Hi friends... I've started this journal to help keep each of you up to date on how B is doing in his latest battle with Non-Hodgkins lymphoma.
Everyday, this disease seems to present a
new adventure. Sometimes, so much happens in a week, or even a day,
it's mind boggling.
So many of you care so much about B and
want to be kept up to date. To help with this, I've started this
journal, a chronicle of the whole journey thus far. Each of you can
decide for yourself how much (or little) you want to know.
Drop in at your convenience to catch up. I'll provide a link to this journal occasionally through Facebook and email. For those of you not on one of those lists, bookmark this page and check back from time to time. To be added a list, email me with your contact info.
Drop in at your convenience to catch up. I'll provide a link to this journal occasionally through Facebook and email. For those of you not on one of those lists, bookmark this page and check back from time to time. To be added a list, email me with your contact info.
I'll be keeping these updates as current as possible.
This journal will have the most recent date at the top.
To read the whole story, from the beginning, scroll to the very bottom, start there and work your way up.
(Also, this journal is a sub-page of
my Artblog [launched in 2008], so, by default, the margins are shared by
both. That's why you see my art related info on both sides of this
journal. It bothers me, as I don't want distractions from
this journal, but I can't hide the margins. So please, just ignore
them. Thanks.)
I
thought I'd add this brief summary for
those of you who don't want to read the daily rundowns I post:
B's Non-Hodgkins
Lymphoma
(in
his lung) is in remission! This was confirmed by
PET
scan on Dec 12th, 2012.
His
debilitating peripheral
neuropathy
continues
to affect his hands, feet and legs, making 6 string guitar playing
impossible and walking difficult. He can still play his U-Bass
though
and enjoys getting together and jamming with friends as often as
possible.
Currently,
he has MyeloDysplastic
Syndrome,
a disease of the bone marrow (sometimes caused by chemotherapy). It affects all three blood components for him, hemoglobin, platelets and white blood cells.
He is completely blood transfusion dependent.
He is completely blood transfusion dependent.
He
needs multiple platelet
transfusions
and red blood cell transfusions to maintain his blood
counts. His bone marrow doesn't make any platelets
at
all, requiring 3-4 units a week.
His
hemoglobin
production
is weak, so he gets about 4-6 units of packed red cells a month.
His
White
Blood Count
and
Neutrophils
also
run low, so he gets multiple Neupogen
shots each week to try to keep those numbers in a somewhat normal zone.
Then,
on Oct 25th,
we met a Bone
Marrow Transplant
specialist,
Dr. Jeffrey Schriber, to just discuss the possibility of a
transplant, not really believing it would be a viable choice for B
because of it's riskiness for folks over 60.
The
news this Doc delivered was frightening.
While
a Bone
Marrow Transplant
has
a 35-40% mortality rate for someone like B, Dr. Schriber believes
that just staying on the supportive transfusion care path has a 100%
chance of mortality.
Sooner than later. Mostly because of the low platelets. The Doc believes B is on borrowed time and a fatal bleed, more than likely in the brain, is inevitable. He also thinks that if a bleed doesn't get him, an uncontrollable infection is another probable culprit for B's demise.
Sooner than later. Mostly because of the low platelets. The Doc believes B is on borrowed time and a fatal bleed, more than likely in the brain, is inevitable. He also thinks that if a bleed doesn't get him, an uncontrollable infection is another probable culprit for B's demise.
So, B has begun the process of becoming a Bone Marrow Transplant recipient.
Details
of this process will be found in the daily updates below.
While
this latest news is devastating, his spirit remains strong.
He
continues to deal with setbacks with grace, dignity and
determination.
And
he continues to be an amazing inspiration to all who know and love
him.
Hope
this helps keep you all up to date. Thanks for your interest and
please feel free to leave comments by email,
or through Facebook.
I'll
show all your comments to B.
Also,
if you are between the ages of 18-44, please consider becoming a bone
marrow donor. It takes just a simple cheek swab to get on the
National Registry and you could potentially SAVE SOMEONE'S LIFE.
Please take a few minutes of your time to become registered. A swab
kit will be sent directly to you, so registering is a do-at-home-
process. Details can be found at http://bethematch.org/Support-the-Cause/Donate-bone-marrow/Join-the-marrow-registry/
For
the somewhat daily updates, here we go:
(The
daily lab reports are for our reference.)
Issues with blogger have necessitated another chapter be created.
To see B's Journey, Chapter Two (September 21st, 2012 through April 15th, 2013) please click here for Chapter Two.
Issues with blogger have necessitated another chapter be created.
To see B's Journey, Chapter Two (September 21st, 2012 through April 15th, 2013) please click here for Chapter Two.
SEPTEMBER 19, 2012-Wednesday-
Today's numbers:
Hemoglobin- 8.8 (increase)
Platelets- 13 (increase, transfusion today 1 unit)
Neutrophils- 2.62 (decrease, No Neupogen today)
White Blood Count- 4.14 (decrease)
Unfortunately, B caught the bug I came down with last Sunday.
He's feeling punky, but hanging in there.
Thankfully, he's not neutropenic anymore, so he has an immune system helping him fight this. His fevers have just been low grade and he's not nearly as sick as he was back when he got those infections while taking Vidaza chemo.
We saw the Doc today and she put him back on Levofloxacin for the time being, to help him fight whatever's causing the fevers.
He had another unit of platelets today. He's been getting by on about 2 units a week lately, but fevers eat platelets, so he probably will need an extra unit this week. I went with him to help drive if need be, but he insisted he was feeling better than me, so he ended up driving both ways. We were joking that between our two half selves, we made a whole, and between the two of us, we'd get back and forth okay.
He says he knows this bug hasn't made him feel as bad as I did on my first day sick (thank goodness!), but, sick is sick, and I hope he starts feeling better again soon.
SEPTEMBER 17-Monday-
Today's numbers:
Hemoglobin- 8.3 (decrease, transfusion today 1 unit)
Platelets- 5 (decrease, transfusion today 1 unit)
Nuetrophils- 3.19 (increase, No Neupogen today)
White blood count- 4.41 (increase)
I am writing this on Tuesday evening because Sunday afternoon, my luck finally ran out.
After years of not getting sick, I began to feel pretty darn yukky and by Sunday evening I was as sick as I've been in years. Sore throat, fever, body aches, chills, nausea, but the worst was the uncontrollable coughing and difficulty breathing. I put on an isolation mask on as soon as I felt like something was amiss to hopefully keep B from catching whatever it was I was getting, and basically went to bed, unable to do anything at all these last 48 hours or so.
This put B entirely on his own, including yesterday, Monday, his normal Doc/lab/transfusion day.
I wanted him to call one of his siblings to drive him there, but he insisted he was fine and could do it himself.
He even promised he stay an extra hour after being transfused to be sure he wouldn't get a reaction to any blood product. That would be a terrible thing to have happen while he was driving. Luckily, no reaction.
He sent me texts throughout the day, letting me know how he was and stuff and thankfully, it all went well for him. He said he kind of liked the independence of the day and even stopped at the Apple store on his way home.
I, at home in bed, was oblivious to the world, hanging on with all my might to just make it through the day.
After spending much of today in bed too, I can't tell you how much better I'm feeling tonight and how grateful I am to be heading in the right direction. Still have a fever though so I'm not quite over it, but I'm okay.
My next biggest worry is hoping that B doesn't catch this. It's a head to toe illness, with a lot of lung and breathing issues, so it would be dangerous for him.
Thankfully, he does have an immune system right now. His White Blood Count and Neutrophils are in the good range.
I have worn a mask the entire time I've been sick, although, there were times it was really hard to keep it on because I felt like I was suffocating. I used my asthma inhaler as much as allowed just to keep breathing.
Yuk. B doesn't need this junk for sure.
SEPTEMBER 14-Friday-
Today's numbers:
Hemoglobin- 8.8 (decrease)
Platelets- 27 (increase, no transfusion today)
Neutrophils- 1.95 (decrease, Neupogen today)
White Blood Count- 2.97 (decrease)
Today's labs were interesting, in a good way.
B didn't need a red blood transfusion today, or platelets either, for that matter.
His hemoglobin drop has slowed to only about a point a day, at least since Monday. So he didn't need any red cells this week. The two units he got last week held up all through this week.
In this experimental post Aranesp period, we are playing close attention to whether or not these counts make a dramatic change (for the worst) these next few weeks/months.
It's been 10 days since his regularly scheduled Aranesp shot was skipped and, so far, it's looking okay that he may get to keep that (dangerous) drug off the table.
The less he has to take, drug wise, the better I like it. So many drugs have bothersome side effects and it gets to where you don't know what's causing what.
And Aranesp is an especially bad drug, with sudden death and tumor growth as just two of it's potential side effects. It would be a good thing if he's able to say bye-bye for good to that one. Fingers crossed.
B also didn't need a platelet transfusion today. He's had just two units this week, which is a bit better than his usual three. And this is the first Friday in a very long time he didn't need a fill up to get him through the weekend, although the Doc joked that maybe he shouldn't shave on Sunday (referring to the pretty low platelet count expected by Monday). Her jovial spirit reflected how pleased she was with his counts.
His Neutrophils and White Blood Count did drop a bit, although they were still in the low normal range. She did order up a Neupogen shot today to give those numbers a little boost.
As time goes on, we are getting a better idea of where B's counts will trend, post Vidaza.
I still intend to chart all these numbers, to make it easier to see the trends, but just haven't gotten to that yet. I have a feeling that setting up a chart on the computer is not going to be my strong suit, so I keep avoiding this task.
Perhaps I should ask my wonderfully geeky accountant daughter to set up a chart for me. She could probably do in 5 minutes, that which would take me hours. Now that's an idea.
Anyway, all in all, he's doing pretty good. His stomach issue of the last few weeks has virtually resolved.
He was able to play again tonight with John and Jeanne on El Saguarito's patio and it was once again a beautiful evening of good friends and good music.
The weather on the patio tonight, while a bit windy, was also beautiful. Fall is just around the corner, and Tucson's cooler evening temps are finally back.
We Tucsonans celebrate our beautiful, mild fall/winters and we get a bit giddy when the scorching summer starts fading in our rear-view mirrors.
Although, I have to say, this year we have had an exceptionally nice summer. Our monsoons just ended, but this year they were wetter than usual, and lasted more than two months, delivering many delightful, cooler rainy days to our desert southwest.
Cooler weather, B feeling good, and me getting to spend my first few delicious hours in over a year back in my art studio painting, have all made for a very good week.
We are thankful for all these things and we don't take a single one of them for granted.
We savor the moments.
SEPTEMBER 12-Wednesday-
Today's numbers:
Hemoglobin- 9.0 (decrease)
Platelets- 13 (increase, transfusion today, 1 unit)
Neutrophils- 5.76 (increase, No Neupogen today)
White Blood Count- 7.19 (increase)
B's White Blood Count and Neutrophils have really been responding to the Neupogen shots lately. He's only needing the shot once every 5 days or so, which is a whole lot better than daily. And the single shot is raising the numbers dramatically each time. I wonder if that aspect of his marrow is waking up. Time will tell.
SEPTEMBER 10-Monday-
Today's numbers:
Hemoglobin- 9.2 (increase)
Platelets- 13 (increase, transfusion today, 1 unit)
Neutrophils- 1.35 (decrease, Neupogen today)
White Blood Count- 2.57 (decrease)
A relatively routine visit with Doc Chen.
I asked her about MyeloDysplastic Syndrome, and what kind of progression of the disease could be expected.
She surprised me with her answer, saying he could be stable for years, and even improve. Especially since his MyeloDysplastic Syndrome, in her opinion is therapy induced. She said no one knows for sure how each individual's MyeloDysplastic Syndrome will unfold. And B is such a unique case, she still thinks there's slight a chance he could even get better.
We don't know if this is just more 'fairy dust', but we sure loved hearing it.
Hope, no matter how slight, is still hope.
SEPTEMBER 7-Friday-
Today's numbers:
Hemoglobin- 8.5 (increase, 1 unit red cells today)
Platelets- 11 (decrease, transfusion today, 1 unit)
Neutrophils- 3.27 (increase, No Neupogen today)
White Blood Count- 4.44 (increase)
B got one unit of platelets today and one unit of packed red cells.
His Neutrophils were great, so no Neupogen shot was needed.
B played another gig with John and Jeanne on the patio at El Saguarito tonight.
He looks better today than he has in a long while and he feels a bit better too. His stomach issue seems to be improving, although it's still not completely gone.
Our thanks to Tom and Emily and also to John and Jeanne for keeping these spots open at their gigs for B on the nights he's strong enough to play.
It's simply amazing how much better he feels when he can make music with his friends.
SEPTEMBER 5-Wednesday-
No labs today.
Ambulatory only.
B got crossed and typed today for one unit of red cells. He'll get a second unit on Friday.
Thankfully, he's been reaction free from transfusions for several weeks now.
He also played a gig this evening with our friends Emily and Tom, the wonderful Daughter/Dad duo.
They have a fun set list, with a bunch of harmony driven, diverse songs, and B's top notch U-Bass playing was a great addition.
Lot's of IBM friends packed the Create Cafe and everyone had a great evening of music, food and visiting.
I think this will be a regular gig for B when he's feeling good.
SEPTEMBER 4-Tuesday-
Today's numbers:
Hemoglobin- 8.1 (decrease)
Platelets- 17 (increase, transfusion today, 1 unit)
Neutrophils- 1.46 decrease, Neupogen today)
White Blood Count- 2.55 (decrease)
This would have been an Aranesp day, but Doc Chen has discontinued this drug for the time being to see what affect, if any, it's having on B's red blood cell production. If his need for red cell transfusions stays the same, he will not continue taking this high risk, 'black box' warning drug.
If his need for red cells increases dramatically, he will more than likely resume the drug. This next month's labs will tell the tale.
B drove this morning.
This is something he's done only a few times since he got real sick last fall.
But it turns out our car's airbags were recalled because if they go off, somehow they shoot out metal parts as they deploy, and that would be a bad thing.
Heck, any collision that would trigger the airbags would be bad, but adding flying shrapnel to the equation when one of the passengers has an uncontrollable bleeding issue, would be even worse.
So, I drove our truck and B followed me to the dealership, 17 miles through rush hour traffic, where we dropped off the car, then went on to the Doc's. Happily, the drive went smoothly.
He is getting stronger post Vidaza.
Because of his MyeloDysplastic Syndrome, he will always have issues with good days and bad days. He has a very serious illness and it takes it's toll.
But, having a few months behind him since last taking the chemo drug is showing. He seems to be getting more good days.
When he was really sick, with few good days, I helped him out by doing most of the little things he just didn't feel well enough to do. Now, I've sort of stepped back, letting him do more of those things himself.
My theory is he will rebuild his strength this way. And I can see it's working. Of course, on the bad days, I will always help him as much as he wants or needs.
I'm sorry to say he's returning the 6 string acoustic guitar he bought a few weeks ago. He's not giving up on trying, but the width of the neck on this instrument, as well as the action of the strings, did not suit his new fingers and hands.
He's got a better idea of what sort of neck he needs now, and of course he'll get the action lowered once he finds the right instrument.
He was disappointed at how he played. But, I admonished him that, just like the daily routine stuff he's now doing to rebuild his overall strength, he needs to play daily to rebuild his atrophied finger and hand muscles. If you haven't played chords, or for that matter, done really anything physically demanding of your hands for over a year, I think a loss of strength would be expected.
I really believe if he played around with a 6 string a little bit every day, he would rebuild strength there too. And surprise himself. So, I'm going to still gently push him to keep trying. Gently.
His morning labs showed he needed a few transfusions, of course, so we got those scheduled. He got platelets today, and will get typed and crossed tomorrow for one unit of red cells tomorrow.
Doc Chen also gave us the results of last weeks ferratin test, and it was dismal. Up from 2800 to 3600. Normal is 300. Ultimately, because he can't take the chelating drugs, this will be a problem. But all the current drugs available to chelate the iron would more than likely kill him so he's stuck with no options to treat.
We are trying not to fixate on that which we can't do anything about, and are doing our best to put the ferratin results out of our minds.
Once again, staying in the moment, and making the most of the good times.
AUGUST 31-Friday-
Today's numbers:
Hemoglobin- 9.2 (increase)
Platelets- 18 (increase, transfusion today, 1 unit)
Neutrophils- 1.8 (decrease, Neupogen today)
White Blood Count- 3.1 (decrease)
We've got a long holiday weekend ahead so B got two units of platelets today to tide him over until Tuesday.
He's still a bit queasy, but not worse, so no tests scheduled yet to see what might be causing the stomach upset. Hoping whatever it is doesn't' escalate over the weekend, but if it does, Doc Chen is on call and can get him seen right away if need be.
Fingers crossed he has a good Labor Day weekend.
He's been rehearsing with a delightful Dad and Daughter duo and is hoping to sit in with them next Wednesday at their gig. The rehearsals have been a lot of fun for B, with a whole lot of new songs to learn, so he's keeping busy and for the most part is keeping his mind off that which ails him.
Staying in the moment and making the most of each one.
AUGUST 29-Wednesday-
Today's numbers:
Hemoglobin- 8.8 (increase, 1 unit red cells today)
Platelets- 9 (decrease, transfusion today, 1 unit)
Neutrophils- 4.57 (increase, No Neupogen today)
White Blood Count- 5.97 (increase)
Saw Doc Chen today and she told us the results of the abdominal ultrasound were unremarkable. Didn't find anything really wrong.
While this is good news so far, B continues to feel funky, so we'll wait a week or so, and if he doesn't improve, Doc Chen wants him to see a GI specialist.
B also had a unit of red and a unit of platelets today. No reaction. Thankfully.
AUGUST 27-Monday-
Today's numbers:
Hemoglobin- 7.6 (decrease, 1 unit red cells today)
Platelets- 28 (increase, no transfusion today)
Neutrophils- 1.02 (decrease, Neupogen today)
White Blood Count- 2.05 (decrease)
Saw Doc Chen today.
She ordered extra labs to recheck where B's ferratin levels currently are.
This will be a scary result because he's had so many red blood transfusions since it was first discovered that his iron levels were off-the-chart high back on March 7th of this year. We know this will be a scary number because he's been unable to do anything to chelate or reduce those levels. The other health issues he has make it impossible for him to take the meds necessary to reduce iron overload from his system. I almost don't want to know the results, just because there is nothing we can do to about it and I know B will get concerned when he hears the numbers. Really, what's the point?
He also asked her about the red blood builder, Aranesp, that he takes bi-monthly and if she thinks it's really helping build his red blood.
He's still getting multiple red blood transfusions every month, even with this med.
So, Doc Chen's decided to stop the Aranesp for the time being, to see if it has indeed been helping or not. Because if it hasn't, there's no sense taking such a dangerous drug. It's a drug that comes with a 'black box' warning and if it's not having any effectiveness building red blood cells, might as well not be on it.
We'll see over the next few weeks/months if it has been helping. The tale will be told by red blood transfusions and if the need for them ratchets up dramatically without the Aranesp.
Lastly today, we discussed B's queasy stomach this last week. He just hasn't felt good so she's ordered an abdominal ultrasound to see what's going on.
So, there we are right now.
On the good news side, B is trying to play regular guitar a bit for the first time in a year. He bought a nylon 6 string last week to see if he could make chords and such, and it was a mixed result. I think he did better than he thought he would, but not as well as he hoped he would. Weird. I know.
But, he's not giving up. And he's still playing his U-Bass with friends, both out and about at the occasional gig, and here at home, with friends stopping by to jam every weekend.
His music makes him so happy and he really enjoys having a houseful of musicians around.
I'm so glad he still has music somehow woven into his life.
AUGUST 24-Friday-
Today's numbers:
Hemoglobin- 8.6 (decrease)
Platelets- 6 (decrease, transfusion today, 2 units)
Neutrophils- 3.83 (increase, No Neupogen today)
White Blood Count- 5.55 (increase)
AUGUST 22-Wednesday-
Today's numbers:
Hemoglobin- 9.5 (decrease)
Platelets- 20 (decrease, no transfusion today)
Neutrophils- .82 (decrease, Neupogen today)
White Blood Count- 2.11 (decrease)
Aranesp today.
AUGUST 20-Monday-
Today's numbers:
Hemoglobin- 10.0 (increase)
Platelets- 14 (decrease, transfusion today, 1 unit)
Neutrophils- 2.08 (increase, No Neupogen today)
White Blood Count- 3.26 (increase)
AUGUST 17-Friday-
Today's numbers:
Hemoglobin- 8.7 (increase, 1 unit red cells today)
Platelets- 17 (increase, transfusion today, 1 unit)
Neutrophils- 1.14 (decrease, Neupogen today)
White Blood Count- 2.08 (decrease)
AUGUST 15-Wednesday-
Today's numbers:
Hemoglobin- 8.1 (decrease, 1 unit red cells today)
Platelets- 8 (decrease, transfusion today, 1 unit platelets today)
Neutrophils- 2.8 (increase, No Neupogen today)
White Blood Count- 4.11 (increase)
AUGUST 13-Monday--
Today's numbers:
Hemoglobin- 8.8 (decrease)
Platelets- 27 (increase)
Neutrophils- 1.4 (decrease, Neupogen today)
White Blood Count- 2.40 (decrease)
These numbers are from my memory of what the Doc said this morning.
I forgot to get a copy of this morning's labs because we got so excited that B didn't need a platelet transfusion today!
He did get two units on Friday, but this is the first time in many, many months that his Monday morning platelet count is above 20.
It's not unusual for B to get two units of platelets on a Friday, to hold him over the weekend, and still have a count below 20 come Monday. We're hoping this morning's good number is a sign that he's finally recovering from the Vidaza treatments and their devastating effect on his blood counts.
He also did without Neupogen shots over the weekend and his Nuetrophils held as well. Yes!
Day by day, B is definitely feeling better and getting a bit stronger. His tastebuds are also waking up, so food is starting to taste a lot better too.
Finally, after many, many weeks of not feeling well enough and not having an immune system strong enough to be in public, B was able to sit in with John and Jeanne Ronstadt again at their gig Saturday night.
He told me that music is the best medicine for him and I think maybe that's reflected in his good blood counts this morning.
I am going to find as many ways as possible to keep his life filled with music, more music.
If any of our musician friends are reading this and want to come by some weekend to participate in one of our fun jam sessions, drop me an email to work out the details.
AUGUST 10-Friday-
Today's numbers:
Hemoglobin- 9.5 (increase)
Platelets- 10 (decrease, transfusion today, 2 units)
Neutrophils- 1.85 (increase, Neupogen today)
White Blood Count- 2.75 (increase)
Transfused 2 units of platelets today. No adverse reaction at all.
B's Neutrophils and White Blood Count are stabilizing nicely.
Doc wants me to hold off giving B Neupogen shots this weekend to see if those counts will hold until Monday. They did drop by not having a Neupogen shot on Thursday (at home), but are still okay, staying within the low normal range.
Thursday was the first day in over 8 weeks that B didn't have a Neupogen shot. He'd like a bunch more Neupogen free days in the future since these shots really make his bones ache.
AUGUST 8-Wednesday-
Today's numbers:
Hemoglobin- 8.8 (increase, 1 unit PRC today)
Platelets- 13 (decrease, transfusion today, 1 unit)
Neutrophils- 2.46 (increase, Neupogen today)
White Blood Count- 1.97 (increase)
Aranesp today.
Transfusion day. 1 unit of platelets and 1 unit of packed red cells.
No adverse reactions today.
AUGUST 6-Monday-
Today's numbers:
Hemoglobin- 8.1 (decrease, transfusion 1 unit PRC today)
Platelets- 4 (decrease, transfusion today, 1 unit)
Neutrophils- 1.75 (increase, Neupogen today)
White Blood Count- 2.89 (increase)
“Fairy Dust” is what B called Doc Chen's hopeful, although cautious prediction this morning.
He said this as we discussed this morning's appointment as we were driving home.
She told B that somewhere down the line in the future, he could still see a positive result from the Vidaza treatments that he's endured these last several months. She said, perhaps, it could still have a positive effect on one or more of his MyeloDysplastic Syndrome blood issues.
B's labeling Doc Chen's hopeful statement as 'fairy dust' wasn't meant as a dis to her, he just thinks she's trying to cheer him up. Can't really blame him for thinking this way as he really hasn't had any victories so far and he's not very optimistic that he's going to get one with the Vidaza either.
But I'm going to stay optimistic that she may be right.
I know miracles can happen and no one knows for sure how B's marrow will eventually react.
Doc Chen has set B up with an appointment for this September, with Dr. Jeffrey Schriber, a transplant specialist at the ScottsdaleHealthcare Cancer Transplant Center. This appointment will be to establish if B is a candidate for a Bone Marrow Transplant, and to start a donor match process if he is.
This will be just a preliminary appointment.
For the next 6 months or so, Doc Chen wants B to simply rest and recuperate from the Vidaza treatments. She only wants B to have this consultation to determine if he's a viable candidate and, if he is, start a donor match, a process which can take 4-6 months to find a match in the national data base.
AUGUST 3-Friday-
Today's numbers:
Hemoglobin- 8.8 (decrease)
Platelets- 13 (decrease, transfusion today, 1 unit)
Neutrophils- 1.11 (increase, Neupogen today)
White Blood Count- 1.97 (increase)
Yet more improvement with the White Blood Count and Neutrophil numbers. He's almost climbed back into the low normal range and looks forward to maybe getting out and playing a gig soon.... and....eating a fresh salad. He's been craving a salad for over a month. Eating fresh veggies and such is a no-no when you're neutropenic. I think I see an Olive Garden visit in his near future.
Thankfully, he didn't have any adverse reactions to this week's 5 units of blood products, so last Thursday's bad reaction was an anomaly. Whew.
He's making noises that he wants to make music this weekend, so I'm hoping he gets his wish and has the strength to do it.
He's happiest when he's making music with friends.
AUGUST 1-Wednesday-
Today's numbers:
Hemoglobin- 9.5 (increase)
Platelets- 18 (transfusion today, 1 unit)
Neutrophils- 0.65 (increase, Neupogen today)
White Blood Count- 1.65 (increase)
Slowly but surely, his White Blood Count and Neutrophils are climbing, but he's still way too low.
Now that the Vidaza cycles have been squashed, theoretically those counts should stabilize over time. Time will tell.
As it stands right now, he will continue to need ongoing platelet transfusions from now on. His bone marrow, from what we understand, isn't making any platelets at all for him. He's completely reliant on transfusions for platelets and is always in a critically low status with that count. This makes uncontrollable bleeding a real issue for him. Care must be taken to keep him from incurring any injury that could cut or bruise him. Critically low platelet counts also increase his risk of unknown internal bleeding and possible strokes.
He does make red cells, but not nearly enough. Hopefully, with the help of Aranesp, his Hemoglobin counts will remain stable and the need for red cell transfusions will decrease somewhat. The further out he gets, time wise, from the last Vidaza treatment, we hope the less he'll need red blood cell transfusions.
With Neupogen shots, he should be able to maintain a decent White Blood Count and Neutrophil count (which are responsible for his immune system health). I hope he can do with less shots once he's put in more distance from the last Vidaza treatment. Neupogen shots cause bone pain for him and he's been on them daily since he finished the last Vidaza cycle 7 weeks ago.
We are still trying to digest the information from Monday.
We are doing some research and have a ton of questions for Doc Chen.
We'll get a clearer picture of what's ahead when we discuss these things with her next week.
Happy to report that B's new PICC line is working well and he's not being stuck with needles multiple times anymore.
Thank goodness.
JULY 30-Monday-
Today's numbers:
Hemoglobin- 7.6 (decrease, 1 unit today)
Platelets- 0 ( transfusion today, 2 units)
Neutrophils- 0.44 (increase, Neupogen today)
White Blood Count- 1.22 (increase)
Today was disappointing.
Doc Chen told B that she wanted him to stop the Vidaza treatment plan. She said that unfortunately in the land of 50/50 chances of success, he was on the unlucky side. Vidaza is simply too hard on his blood counts and she really thinks it's too dangerous for him to continue the treatments. He still hasn't bounced back from the last cycle so he can't start the next. And if you have too much time in between treatments, you lose the effectiveness.
I asked Doc Chen what this meant in the big picture. She's not sure. She doesn't want to 'harm' B with treatment options that may be left. She thinks each of them are really too dangerous for B's situation. She said he's a complicated case and she's not seen one like his in her personal experience.
She mentioned briefly a drug that Doc Rosenberg, also at AZ Oncology, used to help one of his patients with platelet issues. It's a platelet builder called Nplate, but it's complications concerned her greatlyand she didn't think it would be safe for B. It's not indicated for people with MyeloDysplastic Syndrome and could actually cause the MyeloDysplastic Syndrome to morph into leukemia. It's not a good drug choice for B.
She's also mentioned treating with prednisone, as it could stimulate the marrow, but she's not 100% sure about wanting to use this.
Then there was talk of a possible bone marrow transplant, but B's overall health issues and his age make that a very dangerous option. She said the fatality rate was over 30% with a bone marrow transplant, but thought B might want to get 'typed' and start a match process just in case he might want to consider this at some point down the road.
Anyway, with this newest setback, I've decided to start looking outside Tucson for MyeloDysplastic Syndrome specialists who may have seen a case like B's and who may have new ideas on how to approach treatment for him.
Phoenix's Mayo Clinic and MD Anderson are on my list to contact. I want to include Doc Chen in this search. I know she would be a great liaison. She really wants to get B well, and her vast medical knowledge, along with her understanding of his illness would be helpful.
I don't know the protocol or even the politics of asking her to work with Docs outside of AZ Oncology, but I would hope it would be allowed and done with B's best interest at heart. We also want her to continue to manage B's ongoing MyeloDysplastic Syndrome maintenance. Should be an interesting new road in this journey.
B had ZERO platelets this morning. His Hemoglobin also dropped a bit more over the weekend, but not too much thank goodness. He did need two units of platelets today along with a unit of red cells. He will get a second unit of the red stuff tomorrow too.
He's nervous about reactions to these blood products after last Thursday's bad reaction.
JULY 27-Friday-
Today's numbers:
Hemoglobin- 7.8 (decrease)
Platelets- 22 (no transfusion today)
Neutrophils- 0.21 (increase, Neupogen today)
White Blood Count- .65 (decrease)
Happily B recovered from yesterday's transfusion reaction by 9:30pm and slept pretty well last night.
He felt okay this morning, with no fever.
He was scheduled to have his PICC line installed this morning. Because he recovered from the transfusion reaction, we didn't have to reschedule the procedure.
The installation went smoothly, so no more multiple, painful needle sticks for lab draws and transfusions. Whew.
And I've learned a few more nursely maintenance skills to keep the PICC line safe and sound and unoccluded.
Sadly, yesterday's blood transfusion reaction ate up all of B's transfused red cells. So, he's got a real low Hemoglobin level going into this weekend, but hopefully, there won't be any issues from that.
Platelets are low too for the weekend, but Doc didn't want to do any transfusions today. I'm sort of glad after yesterday's ordeal, but B's counts will probably be pretty darn low by Monday.
And then again, we could get our miracle.
JULY 26-Thursday-
No labs today.
B had 2 units of packed red blood cells today.
While at NW Ambulatory, we sent Doc Chen a text to see if she wanted to add on a unit of platelets too since B is getting a PICC line installed tomorrow morning. She thought this was a good idea, so platelets were added to the menu.
After the transfusions, in the car and almost home, B started to show a few subtle signs that he might be having a transfusion reaction. Mostly, he just felt cold. Not full on rigors like he got driving home a few months ago. Well, at least not at first.
Anyway, I gave him a Benedryl as we drove, hoping that it would help keep a reaction at bay, but no such luck. We got home, I got him settled on the couch and wham, like a switch, full transfusion reaction set in.
Rigors. Tachycardia. Climbing fever (all the way to 103°) and B feeling really terrible. Called Doc Chen's cell (5 times throughout the ordeal) and with her directions, spent the next 5 hours managing the reaction.
Tylenol, Ice packs, more Benedryl, and just holding B tight to comfort him. His vitals all slowly started getting better, so we avoided the ER, but it was a long process getting him stable again.
I'm so so glad he's feeling better.
It's physically distressing and emotionally exhausting to see him suffer.
JULY 25-Wednesday-
Today's numbers:
Hemoglobin- 8.2 (decrease)
Platelets- 10 (increase, transfusion today, 1 unit)
Neutrophils- 0.16 (increase, Neupogen today)
White Blood Count- 1.27 (increase)
Aranesp today.
Neupogen and platelets today.
We were only scheduled for labs today but, because of B's continued weakness, I asked to talk to Doc Chen. Told her I really felt his weakness was not middle ear related. She examined B and thought he seemed dopey. His eyelids were heavy and he was slurring his speech.
She thought his Fentanyl patch might still be too high a dose and could be contributing to the weakness. And the incidents, while laying down, could have been B falling asleep, but into a drug induced type sleep, so he was harder to rouse. Anyway, we're going to lower the Fentanyl to 25mcg to see if he improves.
She also did an EKG to see if he might have Qt prolongation issues sometimes associated with the meds I mentioned last week, but that was negative. She did think it was a good idea to follow up with B's cardiologist, Dr. Lionel Faitelson, in the near future to help rule out a heart issue.
I also mentioned to the Doc that I thought that B has sleep apnea. When I described what I see while he sleeps, she agreed and ordered a sleep study. If he does have sleep apnea, perhaps it's impeding his abilities to heal because he's never really rested and isn't getting proper oxygen while he sleeps.
We'll try find a day to get this study done in the near future too.
JULY 23-Monday-
Today's numbers:
Hemoglobin- 8.8 (increase)
Platelets- 6 (transfusion today, 1 unit)
Neutrophils- 0.15 (increase, Neupogen today)
White Blood Count- .81 (decrease)
Well, the larger than normal bag of platelets on Friday had no more staying power than the average bag. We were curious if his counts would hold a bit longer, but today's labs show otherwise. Oh well.
Today was Doc Chen's first day back from vacation.
We had a few questions we'd accumulated this last week while she was gone.
Like, is she going to go with a PICC line or a new chest port-a-cath for B. He needs something besides traditional needle sticks to access his veins. His veins wiggle away when they even think a needle is getting close.
B's poor arms and hands are black and blue from numerous needle sticks in just the week and a half since his chest port-a-cath was removed. Many times, it's taken several attempts to get a single successful lab draw. They're running out of real estate on his arms and hands for blood draws and transfusions because you can't go where there's a bruise and he's bruised pretty much all over both arms and hands.
So we asked when they would be installing a more permanent access site.
The choices are a PICC line or another chest port-a-cath.
The PICC doesn't require surgery, but requires daily flushing with saline and isn't meant to be a long term solution. It's also more cumbersome and requires special maintenance to keep it clean and dry.
The chest port-a-cath can be in for years, only needs flushing once a month and needs no other special care.
We thought Doc Chen was leaning towards a PICC line, but today she said she thought he could get another chest port. We are supposed to consult with Dr. Westerband about this later in the week.
First off though, blood was drawn today for a culture to make sure B's bloodstream infection is really gone. If there's anything lingering, I would bet a PICC line will be the choice. PICC doesn't require surgery for placement or removal and would be easier to manage if B has more issues in the future with infections.
It was confirmed by pathology and cultures that the chest port-a-cath just removed on July 12th was the source of the bloodstream infections these last two months. So, removing it was the right decision.
Okay, addressing a new access solution for B's labs and such was question one.
Question two had to do with B's latest bouts of weakness and syncope.
This started last week as occasional bouts of lightheadedness and weakness in his knees when he was walking. Especially in the heat between offices and car, but he's had a few episodes here in the house as well.
Today he started to fall in the parking lot of NW Ambulatory and it took all the strength I had to keep him off the pavement. Then, when we got home, he started to fall again just as we were getting in the house and this time I couldn't hold him up. He went down as he says 'in slow motion' and fortunately didn't hit anything hard. To say I am a bit freaked out and nervous about all this is an understatement.
I originally thought low blood pressure could be the culprit. Low blood pressure, or orthostatic hypotension, caused B to fall last September and he broke his back. We now know that he regularly has low blood pressure, but he's had this a long time and we've learned how to work with it to avoid falls.
He rarely gets up and immediately starts walking about, from a laying or sitting position, without 'equalizing' first. He waits a half minute or so when he first gets up to be sure he's not getting lightheaded before taking off. This has become standard procedure and has worked well for months.
This new weakness stuff seems different somehow. It's happening even after he's 'equalized' and seems fine. Suddenly, boom, it hits.
And, he's also had a few weird episodes while laying down where it seems he's lost consciousness briefly, including this afternoon at UMC while he was getting his back x-rayed.
The x-ray tech came out and asked me if it was possible that B might have fainted briefly while laying there. She said she felt she 'lost him' briefly while doing the x-ray.
Anyway, this morning Doc Chen thought it might be a middle ear thing since B told her his ears were a bit stopped up. But a middle ear thing would make you dizzy, not weak, and after this afternoon's two falls and the x-ray thing, I'm really thinking his middle ears are not the cause of this weakness stuff.
My sixth sense thing is going strongly again and I feel it could be the Zyvox or the combination of Zyvox with Voriconazole and Levofloxacin that are causing this.
As I've tried to assess what's different, what's new, that might be causing the weakness, I keep coming up with the Zyvox. He's the newest kid on the block.
My instincts led me to Google Zyvox and Syncope and I did discover weakness, syncope and heart arrhythmias listed as possible side effects. And all three of the antibiotics are on the same list as causing these side effects.
I decided to have B stop taking the Zyvox and the Levofloxacin a day early (Sunday morning). He has to stay on the Voriconazole to help prevent pneumonia so I couldn't stop that one. All these drugs can also cause low Magnesium and Potassium levels so I gave B supplements of both of these this afternoon. Maybe with these things on board and no more Zyvox and Levofloxacin, he might start to stabilize and stop the weak spells.
One thing's for sure. I'm staying on this until I get a good answer or until B stops being so weak. I'm even going to suggest we see B's cardiologist to make sure he's not having heart issues.
Something is different and it's not right.
JULY 20-Friday-
Today's numbers:
Hemoglobin- 8.1 (decrease, transfusion today, 1 unit)
Platelets- 13 (transfusion today, 1 unit)
Neutrophils- 0.12 (increase, Neupogen today)
White Blood Count- 1.11 (decrease)
Neupogen shot, 1 unit of platelets ( a very large bag) and 1 unit of packed red cells today.
B's had a bit of weakness and some sinking episodes this week. I'm back to spotting him while he walks about, just in case.
Hoping we get through the weekend with no falls.
I'm to give him Neupogen shots at home on Sat. and Sun.
JULY 18-Wednesday-
Today's numbers:
Hemoglobin- 8.9 (decrease)
Platelets- 11 (transfusion today, 1 unit)
Neutrophils- 0.11 (increase, Neupogen today)
White Blood Count- 1.28 (increase)
The following will be gobbledygook to most of you, but for us it's a record of sorts.
I use B's Neutrophils getting to 0.1 as a marker of sorts. Just something I do. We always celebrate that first 0.1.
It seems to signal that B's immune system may finally be recovering from the previous Vidaza Cycle.
And while it's not really a whole Neutrophil, it's better than 0.0.
I also note how many total days each Vidaza Cycle he stays at 0.0.
How long he's below 0.1.
The January Vidaza cycle he was at zero for 7 days. (this cycle was not an official cycle because of the amount of time that passed in between it and the May cycle.)
In May's Vidaza Cycle One, he was at zero for 13 days.
In June's Vidaza Cycle Two, the one just completed, he was at zero for 12 days.
Probably meaningless. But I'm keeping track for the heck of it.
JULY 17-Tuesday-
No labs today.
Neupogen at home.
We had a really nice day. B's was feeling good and this evening we had a houseful of friends and music again.
I made a pot of Taco soup (YUM!) (no cheese for B) and served 'do-it-yourself' strawberry shortcake for dessert.
The house was filled with music and laughter.
One of our friends, Thomas Gates, is a 'healer' and along with providing percussion, he did a personal healing session with B.
Thanks to Duncan, Tom, John and Jeanne, Dave and Nan, and Thomas for giving B hours and hours of music, sweet healing music. He's a different guy when he's jamming.
JULY 16-Monday-
Today's numbers:
Hemoglobin- 9.5 (increase)
Platelets- 4 (transfusion today, 1 unit)
Neutrophils- .08 (Neupogen today)
White Blood Count- 0.79 (decrease)
Well, we got our wish.
We got to stay home. We left the hospital Friday hopeful there'd be no new crisis and all was quiet.
B did fine over the weekend. No fevers. I think the blood infection is finally under control.
He actually felt pretty darn good and it was great to be home.
He's on a bunch of antibiotics while we wait for his immune system to fire up again.
Still don't have a whole Neutrophil, but that number should start climbing any day now.
He also needs that White Blood Count to climb as well.
The newest antibiotic, Zyvox, has so many dietary restrictions it's going to be quite an adventure finding stuff that B's allowed to eat and actually will eat.
All our regular standbys seem to be on the forbidden list.
Turkey, Cheese, soy sauce, soy products, yogurt, raisins, pepperoni and bananas are just a few foods that he can't eat while on this med.
Ah, that takes Asian, Mexican and Italian food off the table for a while and we eat a lot of Asian, Mexican and Italian food.
Then there's the dietary restrictions because he's neutropenic. That takes most fresh fruits and vegetables off the menu.
It's been a challenge, but I am finding stuff that he'll eat. I'm sure glad this med is supposed to be done by Monday. I'm just sayin'.
JULY 13-Friday-
Today's numbers:
Hemoglobin- 8.5 (decrease, 1 unit today)
Platelets- 57 (no transfusion today,)
Neutrophils- ? (Neupogen today)
White Blood Count- 0.8 (increase)
Day 3 Hospital-
Yippee!
We got to go home late this afternoon.
Here's to an uneventful, fever free, feelin' good weekend.
JULY 12-Thursday-
Today's numbers:
Hemoglobin- 8.9 (decrease)
Platelets- 40 (pre-surgery transfusion today, 2 units)
Neutrophils- ? ( Neupogen today)
White Blood Count- 0.7 (decrease)
Day 2 Hospital-
B had surgery this afternoon to remove his chest port-a-cath.
They gave him 4 units of platelets in the 12 hours prior to surgery to help avoid a bleeding crisis.
That worked and Dr. Westerband was able to take it out without any problems. He plans to do a pathology on the port-a-cath to see if it indeed was harboring a colony of the bacteria that keeps giving B blood infections.
Curious to see if it's the culprit.
After checking B into the hospital yesterday, I ran home to get the bag-o-stuff we like to have with us during hospital stays.
While I was gone, the nurse replaced B's Fentanyl patch. It was mentioned to me when I got back, but I didn't give it much thought.
Until this morning.
And I discovered that B was flying high.
Floating in and out of sleep while talking to me and saying some pretty strange stuff.
Immediately I remembered that this was exactly the way he was when he was on too much Fentanyl last month right after he got out of the hospital.
Turns out the new drug they sent us home with last month, Voriconazole ( for the pneumonia), reacts with Fentanyl, making the Fentanyl narcotic more potent. Last month, after a day and a half of living with a very strange B, I mentioned to Doc Chen that B was, well, weird.
Happy weird.
She knew right away that it was an interaction between the Fentanyl and the Voriconazole and reduced his dose of Fentanyl to 50 mcgs.
Within a few hours that worked, and a more alert, less hallucinogenic B returned. He did say it felt pretty cool while he was in this floating state.
Anyway, this morning, upon recognizing the floating B, I asked the nurse to check to see what strength Fentanyl they had put on him yesterday, and yep, it was 75 mcg. Too much. Again.
So while B was happy, happy, happy, I was a bit worried that this might interfere with his scheduled surgery. But I talked with the anesthesiologist and let him know what was going on and he went with a plan that would take this into account.
B's surgery was successful and happily uneventful.
JULY 11-Wednesday-
Today's numbers:
Hemoglobin- 9.7(increase)
Platelets- 7 (transfusion today, 2 units)
Neutrophils- 0.1 (decrease, Neupogen today)
White Blood Count- 1.0 (increase)
Day 1 Hospital-
B's fevers have been pretty high these last few nights. 101.7-101.9 ish.
That's high for a neutropenic patient.
So, when we got to AZ Oncology this morning, Doc Chen decided to put B in the hospital again.
One, to get some more 24 hour IV antibiotics going, and two, to get the chest port-a-cath removed. While sometimes this removal procedure can be done in a doctor's office, that would be too risky for B because of his bleeding/platelets issues.
Doc Chen believes the chest port-a-cath is the source of B's recurrent Gram Positive Cocci blood infections and she wants it taken out.
JULY 10-Tuesday-
No labs today.
Aranesp today.
Invanz (IV antibiotic) again today.
Transfuse 2 units red blood cells today.
The Doc tried to give B IV Vancomycin today as an extra antibiotic to treat his blood infection, but he had a reaction.
They called the reaction 'red man syndrome'.
B basically turned pretty darn red all over his head and face, so they stopped the infusion. After a few hours B's color returned to normal.
I asked if this reaction meant that he should not have IV Vancomycin ever again. Doc Chen said that may be the case.
(I later asked Dr. Westerband, B's port removal surgeon and he said that you don't really want to take such an effective, powerful antibiotic off the table if needed in the future. He said the rate of infusion would have to be controlled (given very slowly), but he thought that B could still give it a try again someday if need be).
Okay, so the reason we need a port surgeon is because, as I suspected, Doc Chen wants B's port removed. She really believes it's the source of B's second blood infection in as many months.
Friday's blood cultures could have made that decision a bit more definitive, but the floating LabCorp technician that drew B's blood combined the two test samples into one vial ( a no-no when trying to determine if the port is the infection source).
The standard practice is to draw one set of blood from the port itself, and one peripherally, to see if the port location has more of the bad guys.
So this tech, by wrongly combining these two samples, pretty much ruined this diagnosis tool. And, by the time it was discovered that this mistake had been made, B had already started on antibiotics, which changes results of a blood culture test, so that diagnostic window was lost. To say that Doc Chen was annoyed with this lab technician is an understatement.
JULY 9-Monday-
Today's numbers:
Hemoglobin- 8.2 (increase)
Platelets- 7 (transfusion today, 1 unit)
Neutrophils- .05 ( Neupogen today)
White Blood Count- 0.51 (increase)
Platelets and Cross/Type today for 2 units of red cells tomorrow.
Invanz (IV antibiotic) again today and through the week.
JULY 7-Saturday-
No labs today.
Neupogen today
We went to AZ Oncology today for another dose of Invanz (IV antibiotic).
Unfortunately, yesterday's blood cultures were positive for a blood infection, the same strain as last month's.
Scary stuff. Gram Positive Cocci in Clusters.
It's a type of staph infection, but in his bloodstream.
The fact that it's the same strain is worrisome as it could indicate he has an infection in his chest port-a-cath. Each time they do a routine puncture into this port to access his bloodstream (for transfusions or chemo or any other treatment), there's a risk that this common staph, found on the skin, can be introduced into the bloodstream. And once you have such an infection, even after treatment and negative-for-infection blood cultures, there could still be a small number of bacteria sticking to the port.
Then, when B's White Blood Count and Neutrophils counts drop (post Vidaza), these bacteria take advantage of his low immune system, multiplying and spreading throughout his bloodstream again.
If the port-a-cath is the source of infection, B will need to have it removed.
Taking out the port would require surgery, and with his low platelet counts, surgery is a dangerous proposition because of the bleed risks involved.
Not sure what the Doc will decide. We'll cross that bridge next week.
In the meantime, we need to try to get through this weekend without any emergencies. If his fever spikes, or he starts getting sicker than he already is, the Doc will do a direct admit into the hospital.
B doesn't want to go into the hospital.
He says he's much more comfortable here at home, and I'm hoping I can help keep him home, but our bags are packed, the house sitter's on call, and we are prepared to go if need be.
Will do all I can with the fevers and such, but if we need to go, we'll go.
Better safe than sorry.
JULY 6-Friday-
Today's numbers:
Hemoglobin- 8.0 (increase)
Platelets- 9 (decrease, transfusion today, 2 units)
Neutrophils- 0.05 (decrease, Neupogen today)
White Blood Count- 0.46 (decrease)
Well, B hit zero (0.0) today on Neutrophils. This is the 9th day after Day 7 of Vidaza Cycle Two, so he's right on schedule. Darn it.
He also started running a fever last night so I contacted Doc Chen this morning to see if she wanted us to stop by AZ Oncology for a blood culture before we went to our scheduled morning transfusions at the Ambulatory Center.
She said yes and that she also wanted to examine B as well.
Morning labs showed that B's platelets were too low for just one unit of platelets to get him through the weekend, so she changed the transfusion orders to 2 platelets, 1 red cell.
After he got his blood products on board, we returned to AZ Oncology to get a dose of Ivanz , an IV antibiotic. We will go in tomorrow as well for a second dose.
Doc also put B back on Levofloxacin (antibiotic) today to go along with a daily prophylactic dose of Voriconazole (anti-fungal) that he's been on since last month (to help ward off another bout of pneumonia).
Sure hope his Neutrophils come back more quickly than last month. He was at zero for 13 days last month. (He was at zero for 7 days after the January Vidaza cycle.)
JULY 5-Thursday-
Today's numbers:
Hemoglobin- 7.9 (decrease)
Platelets- 20 (decrease, no transfusion today)
Neutrophils- 0.11 (decrease, Neupogen today)
White Blood Count- 0.84 (decrease)
Cross and typed today for 2 more units of Red Cells tomorrow. 1 unit of platelets are on tomorrow's menu as well. Not sure that'll be enough platelets to get him through the weekend.
Doc also ordered IgG levels to be checked today.
JULY 3-Tuesday-
Today's numbers:
Hemoglobin- 8.9 (decrease)
Platelets- 13 (transfusion today)
Neutrophils- .85 (decrease, Neupogen today)
White Blood Count- 1.78 (decrease)
Saw Doc Chen today. Pretty standard stuff.
Watching his counts, transfusing when necessary.
Also watching his White Blood Count and Neutrophils drop post Vidaza, and hoping he won't get any infections during this post Vidaza cycle.
We asked Doc Chen last week what type of MyeloDysplastic Syndrome does B has specifically. There are many subtypes (some more dangerous than others).
We were surprised to hear that the bone marrow pathologies don't really show that B's MDS is chemotherapy induced as was the original thought. Hope that's a true statement, because chemotherapy induced MDS is a more difficult type to treat successfully.
She says he has Refractory Cytopenia with NO blasts. The NO blast part is good, but it's still a moderately severe form of MDS. The fact that it's affecting all three blood components, makes it even more complex.
Refractory Anemia (Red blood cells affected) is a subtype of MDS that Vidaza has been successful treating. Here's hoping that Vidaza works just as well on Refractory Cytopenia (Red cells, White cells and Platelets affected) and that B is one of the guys who gets a good result with this treatment.
JULY 2-Monday-
Today's numbers: (late afternoon, post transfusion labs)
Hemoglobin- 9.1(post)(increase, 2 units today)
Platelets- 29 (transfusion today, 1 unit)
Neutrophils- 1.01 (decrease, Neupogen today)
White Blood Count- 2.03 (increase)
JUNE 29-Friday-
Today's numbers:
Hemoglobin- 8.2 (decrease)(type&cross today for 2 units Monday)
Platelets- 12 (transfusion today, 1 unit)
Neutrophils- 1.97 (increase, Neupogen today)
White Blood Count- 3.11 (increase)
JUNE 27-Wednesday-
Today's numbers:
Hemoglobin- 8.8 (unchanged)
Platelets- 17 (transfusion today, 1 unit)
Neutrophils- 1.17 (decrease, restart Neupogen today)
White Blood Count- 2.06 (increase)
JUNE 26-Tuesday-
Today's numbers:
Hemoglobin- 8.8 (decrease)
Platelets- 22 (no transfusion today)
Neutrophils- 1.26 (decrease, No Neupogen today)
White Blood Count- 2.02 (decrease)
Vidaza-Day 7
Aranesp today.
Today was Day 7, the last day of Vidaza Cycle Two.
Now we wait.
Last cycle he ended up in the hospital (for 10 days), with pneumonia and a blood infection after his White Blood Count and Neutrophils tanked.
But just because, post Vidaza, B has ended up in the hospital the first two times he's received this drug, doesn't mean it'll happen again.
Here's to 3 being the charm and B having uneventful, home sweet home, times ahead.
JUNE 25-Monday-
Today's numbers:
Hemoglobin- 9.1(decrease)
Platelets- 13 (transfusion today, 1 unit)
Neutrophils- 1.41 (increase, No Neupogen today)
White Blood Count- 2.31(increase)
Vidaza-Day 6
B's labs showed his Neutrophils went up a bit. That's without any Neupogen shots for over 10 days.
Today is Day 6 (of 7) of Vidaza Cycle Two. He started this second cycle on June 18th. Theoretically, to keep on a 4 week schedule, Cycle Two should have started on June 5th, but because his White Blood Count and Neutrophils got so low from Cycle One, the Doc had to postpone Cycle Two a few weeks to allow those counts to recover.
Anyway, we sort of got excited that this morning's labs showed B's Neutrophils were rising, despite no Neupogen shots and being in a Vidaza infusion cycle.
I was cautiously optimistic.
But it seemed I also vaguely remembered something similar happening in Cycle One, so when we got home today, I referred to my notes on Vidaza Cycle One, and did discover that on Day 6 of Cycle One, he also had a rise in Neutrophils.
So maybe this morning's labs may mean very little with regard to Vidaza's progress in stimulating B's bone marrow to work again.
But, then again, maybe they do mean something.
I have this feeling, an intuition of sorts, that it is working.
And while this might not be the week we see results, intuition's telling me, someday soon, we will start seeing the happy lab reports we've been hoping and waiting for.
JUNE 23-Saturday-
B is doing pretty darn good. I'll go into more medical detail and catch up a bit on my next post.
It's been almost a month since I've updated B's Journey.
For several reasons.
One, B went into the hospital again on June 1st (through June 10th) and it's difficult to update this blog while he's in there.
At home, I write this blog on a PC, so B's Apple laptop (at the hospital) can trip me up sometimes. Rather than dealing with B's Apple laptop and it's idiosyncratic behaviors that somewhat baffle me, I figure I'll just catch up once he's home again.
We've been home two weeks tomorrow, and until this morning, I hadn't found a chunk of time to blog yet. Our schedule has been crazy. Daily visits for treatments and transfusions, along with catching up on neglected house stuff, has eaten up a bunch of my time.
Secondly, I was catching flak again for actually maintaining this blog from a few folks who think B's Journey should be private. This had come up many months ago and was thought to be resolved, but apparently was still bothering them, so I thought I'd cool it for a while.
(For the record, B likes this journal, a lot, for a variety of reasons.)
Anyway, I even thought that since I was almost a month behind, maybe I'd just cool it from now on. Let word of mouth keep everyone up to date. Put B's journey to rest.
Until this morning.
That's when I got a phone call from one of my oldest, dearest friends from back east.
I was stunned and surprised by what she said.
She found out last week that a recent pain and vision problem in her right eye, was more than likely tied to cancer. And, that what may be cancer on her eye, is most likely a secondary cancer from some unknown source in her body. That she must have cancer in her body too, and now the mission is to find it as well.
As she related what this last week has been like for her, getting more and more bad news piled on with each Doc she visited, she told me she found herself responding with a positive attitude and a sense of strength.
Then she told me that she attributed much of this strength and positive attitude to having followed B's Journey this last year. She kept thinking of B and how he's handled the piling on of bad news, day after day, and how he has kept in the moment, doing what needs to be done, with hope and tenacity. She said it kept her in the moment. It helped her to not be overwhelmed.
When I told her that this morning, just before she called, I had been considering retiring B's Journey for good, she implored me to reconsider.
She said, “Keep B's Journey going. Do it for me. And do it for the others you don't even know about who are also dealing with their own health issues and may be finding strength in how B has handled and continues to handle his own journey.”
She requested I mention an important thought for those who may go alone to their doctor's appointments. Record what the Doc's say (on your cellphone) or keep notes. Ask the Doc to write the important stuff down. She didn't hear much after the C word was mentioned and wishes she'd been able to remember all that was said. Going forward, she intends to be an informed patient. Her own advocate.
She also requested I ask B to consider writing about where he finds the strength and tenacity to keep going forward, even when the news is bad or he when he feels downright punky. How does he go, not just forward, but forward with a positive attitude?
He's thinking about it, but says he doesn't really know for sure what it is that keeps him going. But he's giving it some thought. He says each individual finds their own strength in their own way.
For him, music helps.
For him, staying even keel, helps. Steady as she goes, not too high, not too low.
And, he says, staying in the moment, enjoying the simple, little things along the way, is really important. Don't get too far ahead, filling your head with “what if's” and worries you can't do anything about at the time. We always say, tomorrow the earth may tilt on it's axis, so let's have the best day we can have today.
Also, let yourself be human, giving in to those low moments sometimes. That's okay too.
We're not always positive. We have those moments when we cry so hard, we blow snot bubbles out our noses. Then we recompose, take a deep breath, and keep moving forward. One day at a time.
One other thing he mentioned is how incredibly lifted he is by the support he gets from his friends and family, in so many ways, large and small. Let your friends and family help you. It's good for them, it's good for you.
I'm here for you C. I love you.
You've got my support, my prayers, my ears.
And thanks for letting me know I should keep this journal going.
JUNE 6-Wednesday-
For the time being, I won't be updating this journey.
My apologies.
Please keep your thoughts and prayers going for B.
He's in the hospital with a blood infection and pneumonia and needs all the help he can get.
Thanks.
The following is a recap of JUNE 1-Friday-through JUNE 22-Friday, the 3 weeks I was unable to blog.
JUNE 22-Friday -Today's numbers:
Hemoglobin- 9.8 (post)(transfusion, 2 units)
Platelets- 37 (post) (transfusion today, 1 unit)
Neutrophils- .73 (increase, No Neupogen today)
White Blood Count- 1.93 (increase)
Vidaza-Cycle two-Day 5
JUNE 21-Thursday -Today's numbers:
Hemoglobin- 8.0 (decrease)
Platelets- 18 (no transfusion today)
Neutrophils- 0.68 (increase, No Neupogen today)
White Blood Count- 1.53 (increase)
Vidaza-Cycle two-Day 4
Type/Cross for 2 units red blood tomorrow.
JUNE 20-Wednesday -Today's numbers:
Hemoglobin- 8.3 (decrease)
Platelets- 25 (No transfusion today)
Neutrophils- 0.64 (decrease, No Neupogen today)
White Blood Count- 1.33 (decrease)
Vidaza-Cycle two-Day 3
JUNE 19-Tuesday -Today's numbers:
No labs today.
Vidaza-Cycle two-Day 2
JUNE 18-Monday -Today's numbers:
Hemoglobin- 8.5 (decrease)
Platelets- 18 (transfusion today, 1 unit)
Neutrophils- 1.05 (decrease, No Neupogen today)
White Blood Count- 2.15 (decrease)
Vidaza-Cycle two-Day 1
JUNE 15-Friday -Today's numbers:
Hemoglobin- 8.8 (decrease)
Platelets- 7 (transfusion today, 2 units)
Neutrophils- 2.57 (increase, Neupogen today)
White Blood Count- 3.86 (increase)
IV Vancomycin cancelled. This was at the end of the regimen and he had enough in his bloodstream to finish the protocol.
Doc wants to start Vidaza cycle Two on Monday.
She does not want me to give B Neupogen shots this weekend to build up his Neutrophil/White Blood Count counts. Not sure why, but she's seems adamant.
JUNE 14-Thursday -Today's numbers:
Hemoglobin- 9.0 (decrease)
Platelets- 18 (no transfusion today)
Neutrophils- 2.02 (increase, Neupogen today)
White Blood Count- 3.04 (decrease)
IV Vancomycin 1.5 grams
JUNE 13-Wednesday -Today's numbers:
Hemoglobin- 9.5 (decrease)
Platelets- 8 (transfusion today,1 unit)
Neutrophils- 1.91 (increase, Neupogen today)
White Blood Count- 2.96 (increase)
IV Vancomycin cancelled for today. They did labs to check for how much Vancomycin was in B's blood stream. Too much is hard on the kidneys and it was a bit high, so they cancelled today's dose.
JUNE 12-Tuesday -Today's numbers:
Hemoglobin- 9.8 (increase)
Platelets- 21 (no transfusion today)
Neutrophils- 1.39 (increase, Neupogen today)
White Blood Count- 2.28 (increase)
Aranesp today.
IV Vancomycin 2.0 grams.
JUNE 11-Monday -Today's numbers:
Hemoglobin- 9.7 (decrease)
Platelets- 6 (transfusion today, 1 unit)
Neutrophils- 1.32 (increase, Neupogen today)
White Blood Count- 2.41 (increase)
IV Vancomycin at AZ Onc. 2.0 grams
JUNE 10-Sunday -Today's numbers:
Hemoglobin- 10.1 (increase)
Platelets- 23 (no transfusion today)
Neutrophils- 0.8 (increase, Neupogen today)
White Blood Count- 1.4 (increase)
Day 10-Hospital
We went home this afternoon!!!
HOME! That place unlike any other.
JUNE 9-Saturday -Today's numbers:
Hemoglobin- 7.9 (decrease, transfusion today, 2 units)
Platelets- 19 (transfusion today, 1 unit)
Neutrophils- 0.5 (decrease, Neupogen today)
White Blood Count- 1.1 (decrease)
Day 9-Hospital
Our 11th Wedding Anniversary today.
B and I were okay with spending it quietly together, in the hospital. We listened to Paul McCartney's new album that a friend dropped off and pretended we were in a fancy resort. Life is what you make it and we made it okay.
He was feeling better, which was good too.
JUNE 8-Friday -Today's numbers:
Hemoglobin- 8.8 (decrease)
Platelets- 15 (transfusion today, 2 units)
Neutrophils- 0.6 (increase, Neupogen today)
White Blood Count- 1.3 (decrease)
Day 8-Hospital
JUNE 7-Thursday -Today's numbers:
Not sure where the lab results for today are so this is incomplete.
Hemoglobin- Platelets- (
Neutrophils- (Neupogen today)
Day 7 -Hospital
Not sure if B had his IgG transfused today. My record keeping while in the hospital is hit and miss. But, whenever it was, he had a reaction again, rigors, and it took almost 20 hours to get the bottle of IgG infused because of how slow they needed to go.
JUNE 6-Wednesday -Today's numbers:
Hemoglobin- 8.5 (decrease)
Platelets- 26 (no transfusion today)
Neutrophils- 0.2 (increase, Neupogen today)
White Blood Count- 1.3 (increase)
Day 6-Hospital
X-rays show that B's pneumonia is improving.
Blood cultures show the blood infection is gone.
JUNE 5-Tuesday -Today's numbers:
Hemoglobin- 9.5 (increase)
Platelets- 23 (no transfusion today)
Neutrophils- 0.1 (increase, Neupogen today)
White Blood Count- 1.0 (increase)
Day 5-Hospital
Yippee! A Neutrophil today.
JUNE 4-Monday -Today's numbers:
Hemoglobin- 8.6 (increase)
Platelets- 13 (transfusion today, 1 units)
Neutrophils- 0.00 (Neupogen, today)
White Blood Count- 0.7 (increase)
Day 4-Hospital
JUNE 3-Sunday -Today's numbers:
Hemoglobin- 7.0 (decrease, transfuse 2 units)
Platelets- 18 (transfusion today, 1 units)
Neutrophils- 0.00 (Neupogen today)
White Blood Count- 0.6 (decrease)
Day 3-Hospital
JUNE 2-Saturday -Today's numbers:
Hemoglobin- 8.3 (decrease)
Platelets- 31 (no transfusion today)
Neutrophils- 0.00 (decrease, Neupogen today)
White Blood Count- 1.0 (increase)
Day 2- Hospital
JUNE 1-Friday -Today's numbers:
Hemoglobin- 8.5 (decrease)
Platelets- 15 (transfusion today, 1 unit)
Neutrophils- 0.05 (increase, Neupogen today)
White Blood Count- 0.64 (increase)
B was admitted into the hospital today.
We first went to AZ Onc for a scheduled appt., but B was feverish and a feeling really funky, so it was decided we would go to NW Emergency Room. They knew he would be admitted, but due to a lack of rooms that could accommodate a neutropenic patient, it took about 10 hours to get into a room.
He has a blood infection and pneumonia.
Started on IV antibiotics, Merrum.
He also got IV Vancomycin while in the hospital.
May 31-Thursday -
Today's numbers:
Hemoglobin- 9.0 (decrease)
Platelets- 11 (transfusion today, 1 unit)
Neutrophils- 0.04 (increase, Neupogen today)
White Blood Count- 0.59 (decrease)
MAY 29-Tuesday-
Today's numbers:
Hemoglobin- 9.7 (decrease)
Platelets- 1 (transfusion today, 2 units)
Neutrophils- 0.02 (decrease, Neupogen today)
White Blood Count- 0.59 (decrease)
Aranesp today.
Appt. with Doc Chen today.
Some good news is she does not think he has developed Platelet Transfusion Refractoriness.
She also had a bunch of extra labs done on Friday to see why B's bilirubin levels have been creeping up. She called me Thursday evening about wanting these extra labs, mentioning a few different scenarios to me about what she was trying to rule out. Some of them were scary, so I held my breath this weekend afraid she might call with bad news. I also decided not to mention to B all of what she was suspicious of, figuring he's got enough on his plate to deal with, why ruin the weekend. Thankfully, she didn't call with bad news.
And happily, at today's appointment, she said the results of the haptaglobin and other tests did not show his liver is in trouble. The high bilirubin levels are probably tied to the blood transfusions. Good news.
Today we also discussed an Indian syrup, Balguti, that a friend had told us did wonders for another guy with thrombocytopenia (low platelets). Doc Chen personally knew the local oncologist, Dr. Surresh Kattakar, that used to use this syrup with his own chemo patients, but told us he no longer practices here in the United States. She said that Balguti is next to impossible to get in the United States from any reliable source. She did make a note to look into it more, and will let us know what she finds out. I suspect that this will be a dead end though.
B had a bad reaction to his platelet transfusion today. Fever and chills. It took a few hours to get him stabilized, but he's okay now.
After such low all around blood counts last week, we were a bit scared with the prospect of the long 3 day holiday weekend without transfusions.
But, B did fine.
In fact, he had a great weekend with friends, music and comedy DVD's in the house to help keep his mind off the yukky stuff.
I can't thank them enough for their time and kindness.
We sang and belly laughed our way through the weekend.
It was good.
MAY 25-Friday-
Today's numbers: afternoon
Hemoglobin- 10.2 (increase, post transfusion)
Platelets- 47 (1 hour post transfusion)
Neutrophils- 0.04 (decrease)
White Blood Count- 0.73 (increase)
B had 7 hours of transfusions today. (2 platelets, 2 units packed red blood.)
No adverse reactions. Yippee!
Now, time to have put thoughts of numbers aside and have a good weekend.
Music, movies and mind-melds.
MAY 24-Thursday-
Today's numbers: morning
Hemoglobin- 9.1 (decrease)
Platelets- 5 (another transfusion today! 2 days in a row!)
Neutrophils- 0.21 (decrease, Neupogen today)
White Blood Count- 0.82 (decrease)
Today's numbers: afternoon
Hemoglobin- 8.6 (decreased even more since this morning)
Platelets- 34 (1 hour post transfusion)
Neutrophils- 0.07 (decreased even more since this morning)
White Blood Count- 0.45 (decreased even more since this morning)
Appointment with Doc Chen today.
We discussed the platelets not holding and questioned her about the possibility that he might be developing Platelet Transfusion Refractoriness.
This condition can sometimes happen to folks who are platelet transfusion dependant.
There's a possibility that B has developed HLA-alloimmunization antigens that might be attacking the transfused platelets, rendering them useless.
Doc Chen isn't sure if this is happening or not. Doing 1 hour post transfusion labs can help to determine if this might be happening.
With PTR, the 1 hour post transfusion number would show no increase in platelets after a transfusion. So I guess the fact that his post transfusion count did rise is a good sign that he hasn't developed PTR.
She believes these short lived platelet transfusions are tied to the Vidaza treatments and the transfusions will get better over the next few weeks.
I think she's going to continue to do the 1 hour post platelet transfusion labs for a while to be sure he hasn't developed Platelet Transfusion Refractoriness. (PTR) (PTR)
Because of the Memorial Day holiday weekend coming up, the Doc's office, as well as the Ambulatory facility are both closed Saturday, Sunday, and Monday.
So, Doc Chen wants to load B up with all the blood products he might need to get through this long weekend.
He will get 1 unit of platelets today ...then... 2 units of platelets as well as 2 units of red blood cells tomorrow.
He's flabbergasted and scared that his counts are so dismal and that he needs this much blood product in one day.
I'm doing my best to convince him to stay in the moment and not dwell on the numbers. But he's a programmer/software engineer and is finding it hard to simply turn his brain off.
He's processing the numbers and the conclusions he's coming to are causing him to be quite anxious.
I plan on trying to find ways to keep his mind off the stuff he can't control.
Every time I see him focusing on the numbers and starting to mope, I give him a Vulcan Mind Meld to help get his brain out of that mode.
I squeeze his shoulder between my fingers and thumb, close my eyes and mentally transmit-
Forget the numbers, forget the numbers, forget the numbers.
Don't look ahead. Live this moment. Find laughter. Find fun.
Forget the numbers.
We're going to fill this weekend with a lot of comedy and adventure movies (no dreary stuff allowed) and even have over a few musicians (with masks) to help keep his mind in more pleasant places.
The Masked Musicians. Now there's another name for a band.
MAY 23-Wednesday-
No appt. today. No labs.
Neupogen shot at home.
MAY 22-Tuesday-
Today's numbers: afternoon
Hemoglobin- 9.4 (post transfusion of 2 units, 1 today, 1 yesterday)
Platelets- 8 (another transfusion today! 2 days in a row!)
Neutrophils- 0.90 (decrease, Neupogen today)
White Blood Count- 1.64 (decrease)
Uh oh.
The numbers are still dropping.
We are officially in bubble boy mode now.
Come on Neutrophils, don't go down any further! Hang in there!
And what's up with yesterday's platelet transfusion not lasting even a day!
Tomorrow is the 8th day after Day 7.
The zero-zone day last cycle. The day his Neutrophils hit zero post Vidaza. With this in mind, we called the Doc and asked if she wanted us to run over to Arizona Oncology after B was finished with his red blood transfusion late this morning.
We thought it would be wise to recheck his counts as he might need another Neupogen shot while we were nearby.
Good thing we made the call.
The afternoon labs showed that, even after yesterday's transfusion, B's platelets had already dropped to 8!
And, the White Blood Count/Neutrophils had also fallen more, so he did need a Neupogen shot. (I also got instructions to give him Neupogen shots at home as well.)
After discovering yesterday's platelets didn't stick, we headed back to the NW Ambulatory to get platelets yet again. The nurses were a bit surprised to see us back there less than an hour after leaving.
Things had slowed down a bit there, so we were also able to discuss with the nurse the Friday ER vs Ambulatory transfusion thing. We found out that there were NO platelets available (for the Ambulatory Dept) that whole day because of an open heart surgery being done at NW Hospital. The hospital was keeping all it's platelets on hand for any emergency that surgery might present. So, it turns out, that it wouldn't have mattered if we had been on time at the Doc's Friday, no matter what, we would have had to get the platelets in the ER. I guess this is like the second time in 4 years this has happened, so that reason probably won't be an issue for us again.
She did say though, that getting the order in early does matter, because on any given normal day, only 8-10 platelet units are available and they do run out. Boy, am I learning a lot as we go along.
Anyway, back to where we are today. It seems that, like last time post Vidaza, B may be on that lunatic fringe of hospitalization again if this downward trend of his blood counts continues.
So far, the Doc hasn't indicated she wants him to go back in, but our bags are packed, the house-sitter's on stand-by and we're ready to go if need be.
Better safe, than sorry.
MAY 21-Monday-
Today's numbers:
Hemoglobin- 7.4 (decrease, transfuse 1 unit today, 1 tomorrow)
Platelets- 3 (transfusion today)
Neutrophils- 2.58 (decrease, Neupogen today)
White Blood Count- 2.58 (decrease)
Okay, here we go.
The White Blood Count and Neutrophil counts are starting to drop post Vidaza. We sure hope they haven't started going into a free fall mode.
We are nervous.
We are also disappointed that, even with the Aranesp shot last Monday, B's red count fell below the transfusion threshold.
It's downright dangerous to keep adding iron to his already iron-overloaded system (through red cell transfusions) but if he needs the blood, he needs the blood. And he needs it. So it is.
Friday's platelets didn't stick either.
I guess, on the bright side, we didn't have to get today's platelet transfusion at the ER this time.
My gentle suggestion this morning at Arizona Oncology, that in the future labs get done and read as early as possible, was met with warmness and grace.
Just as I expected from this fine group of people. They want things to go as smoothly as possible for B and are always happy to help.
MAY 18-Friday-
Today's numbers:
Hemoglobin- 8.6 (decrease)
Platelets- 3 (transfusion today)
Neutrophils- 4.23 (increase, Neupogen today)
White Blood Count- 5.39 (increase)
The good news is B's Neutrophils and White Blood Count are great. So far, so good.
Zero-zone, if this cycle repeats the history of the January Vidaza cycle, is still 5 days away. A zero Neutrophil count occurred 8 days after Day 7 of treatment last time. That put him in the hospital and it took 10 days for his Neutrophils to finally break zero and start climbing back.
We've got our fingers crossed that history doesn't repeat itself this time. The fact that his Neutrophils and White Blood Count are actually going up is a very good sign that this time will indeed be better.
B's also begun daily Neupogen shots again to help keep those important counts in the normal range.
Okay, I am going to go into a gentle rant right now about some failures in the usually smooth transfusion process that occurred today. I will try to be polite, out of respect for the normally stellar job done by the staff of Arizona Oncology.
Arizona Oncology needs to be made aware of how an hour delay and not getting B's platelet ordered, in a timely manner, caused quite a hardship on us yesterday.
Our normally routine 1 hour platelet transfusion (done 1-2 times weekly) at NW Ambulatory Dept, had to instead be done this time at the NW Hospital's Emergency Room.
The NW Ambulatory Dept (a separate facility about a block away from AZ Oncology, where B has gotten all his transfusions since Dec 2011), closes at 2pm on Fridays (3pm M-Th). The platelets B needed today would not be available in time to get it done there in the usual manner.
So instead, we had to go to NW Hospital's Emergency Room, where the transfusion took over 3 hours and also cost us $175. (It costs us $0 at NW Ambulatory)
I'm going to let the staff at Arizona Oncology know how difficult this whole day was for B.
The money part aside, the whole ER thing was just that much harder on B from a physical standpoint.
He was exhausted by the time they were done. A very long day.
Arizona Oncology needs to be made aware of the impact that a simple office visit, delayed by just an hour, makes for the transfusion dependant patient (folks getting two or more transfusions a week).
And, there should be a solution put in place, to help avoid this problem in the future.
Today, the Doc was running behind an hour and a half with her office visits.
Feeling that this delay could make it difficult to get B's platelets in time, I went to speak to several staff members while we were waiting and told them we knew B would probably be needing platelets, and that I thought we were cutting it close with NW Ambulatory's schedule.
They didn't react with an appropriate sense of urgency with regard for this time sensitive issue. I get it, they were busy and they probably weren't really aware of the importance of time here.
This is where I hope to help them.
I'm hoping with the gentle nudging I plan to give them on Monday, that, in the future, Arizona Oncology will realize the need to prioritize the lab and transfusion order process, especially with transfusion dependant patients, especially on those days when things are running behind.
Get the labs done and read early, and get the platelets ordered in a timely manner.
Then, if the Doc is running an hour + behind (which they would already be aware of), transfusions aren't held up. There's no reason this should happen to us (or any other transfusion dependant patient) again in the future.
We would go get the transfusion and come back in an hour to see the Doc. Heck, bump us back in the Doc's patient schedule, but let us get the platelets on board in the meantime.
After five months of first hand observations, we have become very familiar with Arizona Oncology's procedures and office routines, and know this is doable.
Seems simple to me.
(post-script- Please read May 22nd's entry for more info on why there were no platelets. It turns out, that no matter what time we were seen today, we would have still had to go to ER for the platelets. But, we were also told, the earlier platelets are ordered, the better, as the Ambulatory facility does sometimes close early if they have no patients/orders, and then ER would need to be used again.)
MAY 15-Tuesday-
Today's numbers: (afternoon)
Hemoglobin- 9.6 (post trans count)
Platelets- 32 (post trans count)
Neutrophils- 1.73 (decrease, No Neupogen today)
White Blood Count- 3.16 (decrease)
Vidaza-Day 7
B got 2 units of red blood today.
And today was the final day of this Vidaza cycle.
Now, we watch and see if his Neutrophils will plummet like last time.
This time his White Blood Count and Neutrophils counts have remained higher through treatment, and he's not fighting an infection like last time, so maybe, just maybe, he won't go to zero.
The zero zone last time began 8 days after Day 7.
So, in a week or so, we will know.
In the meantime, we're being extra cautious, and have activated his 'bubble boy' status.
I start giving him Neupogen tomorrow, and he will get them daily for a few weeks (I'm guessing) until he normalizes, then he'll probably go back to twice weekly (while we wait for Vidaza to work).
He's feeling okay and I suspect he'll feel better with each day now that treatment is over.
Since he'll probably be neutropenic any day now, he'll keep resting and healing while we lay low for a bit, keeping the infection risk to a minimum.
Then, maybe in a few weeks, he can start making music again with his friends.
He loves to being around friends, so we're looking forward to it.
MAY 14-Monday-
Today's numbers:
Hemoglobin- 7.7 (decrease, needs 2 units)
Platelets- 14 (transfusion today)
Neutrophils- 2.48 (surprising increase, No Neupogen today)
White Blood Count- 3.49 (increase)
Aranesp today
Vidaza-Day 6
B needed platelets today.
And he will get two units of red blood tomorrow.
Surprisingly, B's White Blood Count and Neutrophils actually increased.
That's a surprise because, during Vidaza treatments, Neupogen shots are suspended throughout the Vidaza cycle. B usually needs a Neupogen shot every 3 days to just maintain a decent count, so no shot for the 9 days it takes to complete a full Vidaza cycle would in itself cause a drop. Then there's the Vidaza lowering effect too. So, surprise. An increase.
When I referenced the last Vidaza cycle, B's White Blood Count and Neutrophils fell steadily every from Day 2 on during that treatment. So, an increase on Day Six this cycle is promising.
B did run a fever (101.9) late Friday evening, and a lower fever (99.9) on Saturday evening, so the Doc thinks maybe the increases are because B's system had the umph to launch an attack against something that was trying to take hold. He's been fever free since Saturday.
By referring to last Vidaza cycle's notes, B had been fighting an infection (lung?) off and on prior to even starting that Vidaza treatment. So, he was on antibiotics prior to and during that cycle.
His temp was normal throughout that cycle, although he did start running a fever in the evening on Day 7 last time.
[apologies for these tedious references to the last Vidaza treatment cycle, but these mini summaries help us know what we might expect this time]
So, he's doing okay.
He seems more tired, but that's to be expected during treatments.
Disappointed we didn't get more time in between Hemoglobin transfusions, but lower counts are expected with Vidaza, so even though he's still on Aranesp (had his shot today), it wasn't quite enough to keep the red cells up.
If, Vidaza eventually works for B, at some point, his labs will tell the tale. The Doc says it will be a recognizable event. His counts won't just start creeping up, but instead would show a significant improvement. That's if Vidaza works for him. And that recognizable event could happen anytime or it could take months to see.
So, in the meantime, we expect supportive transfusions and Neupogen shots will continue as they have been, maybe even increase in the short term post treatments.
Thanks for continuing to keep B in your thoughts and prayers.
Please put in a good word that B's Vidaza treatments do the trick.
C'mon Vidaza!
MAY 11-Friday-
Today's numbers:
Hemoglobin- 8.3 (decrease)
Platelets- 42 (no transfusion today)
Neutrophils- 1.47 (increase, No Neupogen today)
White Blood Count- 2.83 (increase)
Vidaza-Day 5
Counts are holding steady as we go into the weekend. Yes.
Referring to my notes, the last time B had Vidaza, his Neutrophil count didn't go to zero until 8 days after Day 7 of the Vidaza cycle. So, we aren't in the zero zone yet.
I'm hoping we will manage his upcoming 'bubble boy' period with no setbacks, no fevers, no bloody noses. He became sick on Day 7 last time, running post transfusion fevers off and on.
I don't know how this time will compare to the January Vidaza cycle and the subsequent issues he had post treatment then. Time will tell.
What I do know is that after the first five days of Vidaza treatments, B's feeling pretty okay. (Knock wood)
He's even making noise that he night try to play tomorrow with John and Jeanne again, but we'll see.
I will be his voice of reason. Slow and steady.
But, if he's doing alright, you can be sure I'll encourage him to get out there and make some music.
It's one of his best medicines.
MAY 10-Thursday-
Today's numbers:
Hemoglobin- 8.5 (increase)
Platelets- 11 (transfusion today)
Neutrophils- 1.24 (no change, No Neupogen today)
White Blood Count- 2.62 (increase)
Vidaza-Day 4
Neutrophil, White Blood Count and Hemoglobin counts seem to be holding steady.
B got the expected platelet transfusion today and for a change, got a unit that didn't expire the same day and was the same blood type as him.
Platelets don't have to be an exact blood type match (like red blood cells do), but I was doing some research (google, of course) and found a bone marrow site that said there is a correlation between platelet longevity and matching the donor's blood type. It has something to do with B's body not attacking the donor platelets. I will get into a more medically detailed explanation about this at a later date.
We had a conversation with Doc Chen about platelet longevity today and she said it may be possible to request a specific type. Not sure about the expiration date protocol though.
Today's fresher, same blood type platelets were a coincidence, and had nothing to do with talking to Doc Chen about it, but we will be curious to see if this batch lasts longer than 3 days.
MAY 9-Wednesday-
Today's numbers:
Hemoglobin- 8.4 (decrease)
Platelets- 14 (no transfusion today)
Neutrophils- 1.24 (decrease, No Neupogen today)
White Blood Count- 2.29 (decrease)
Vidaza-Day 3
A bit scary seeing the Neutrophils dropping. Come on Neutrophils, hang on!
Also, even though he was below 20, Doc Chen wants to wait until tomorrow for a platelet transfusion.
Hemoglobin is holding steady. He will be able to continue Aranesp while undergoing the Vidaza treatments. That should hopefully keep the red stuff up a bit.
B's feeling a bit punky, but not as bad as we thought he might get.
MAY 7-Monday-
Today's numbers:
Hemoglobin- 8.5 (decrease)
Platelets- 7 (transfusion today)
Neutrophils- 2.17 (increase, No Neupogen today)
White Blood Count- 3.62 (increase)
Vidaza-Day 1
Today B started his Vidaza treatments.
We know that Vidaza will probably lower all B's blood counts initially, so I gave him Neupogen shots on Friday and Saturday to help give his Neutrophils a boost before he got started.
We found out that while he's undergoing this treatment over the next week and a half, he can't have any Neupogen shots to help keep his Neutrophil counts up. This is scary because just to keep his counts up normally (without Vidaza treatments), he's needed 2 shots a week average for months now.
So, no Neupogen shots at all along with Vidaza's blood count lowering effects do have us a bit nervous, to say the least.
It was B's Neutrophils going to zero and staying there for 10+ days that put B in the hospital in late January.
Doc Chen was being extra cautious at the time and we don't know if she will do the same if his count goes to zero again. We'll see and, we'll roll with it, whatever comes. Cautious is good.
In the meantime, here's to an uneventful week of treatments, with no fevers or other unforeseen problems.
And here's to it not knocking B too far backwards either.
He's been feeling good enough to get out and about lately and it's been so good for his spirit.
MAY 6-Sunday-
One piece of good news to report.
Doc Chen changed B's peripheral neuropathy drug to Lyrica on Thursday and as I update this blog this morning, he's reporting that he thinks it's working slightly better than the Gabapentin.
So far, he hasn't experienced the troublesome side effects that could have shown up with Lyrica, so I think he'll be able to continue this drug.
Sure wish B's dang peripheral neuropathy would go away, but in the meantime, thank goodness his discomfort has been brought down a smidge.
MAY 3-Thursday-
Today's numbers:
Hemoglobin- 8.9 (decrease)
Platelets- 14 (transfusion today)
Neutrophils- 1.43 (increase, Neupogen today)
White Blood Count- 2.76 (increase)
The results of the bone marrow biopsy were not good.
B now officially has Myelodysplastic Syndrome.
His sleepy bone marrow will not be waking up on it's own.
He will need to start treatments asap and unfortunately the only treatment available is Vidaza. The same drug that dropped his blood counts so low he needed hospitalization in February.
But, B doesn't have any other choice really.
Vidaza has a 50/50 chance of reversing the Myelodysplastic Syndrome. Doc Chen says he will need at least 5-6 months of treatment to determine if it will work for him. In the meantime, he will continue Aranesp, Neupogen and supportive transfusions.
Vidaza will hopefully also keep the Myelodysplastic Syndrome from morphing into Leukemia. I guess that's a common progression of this disease.
So, here we are.
We will continue to take it a step at a time and deal with the here and now.
I went back to the late January entries on this blog and refreshed my memory on how B handled Vidaza the last time.
Not sure if this time will be the same, we'll just have to wait and see.
Once again, for the third week in a row, B was able to play out with his U-Bass. Another magical night of music under the stars with loads of friends and family. Our thanks to all of you for coming down and sharing the love.
APRIL 30-Monday-
Today's numbers:
Hemoglobin- 9.4 (increase)
Platelets- 9 (single digit again!? transfusion today)
Neutrophils- 1.04 (decrease, Neupogen today)
White Blood Count- 2.37 (decrease)
Friday's 2 units of the red stuff was reflected in today's Hemoglobin count,
but Thursday's Platelet transfusion sure didn't last long!
Single digits again! So, another platelet transfusion again, and since the Neutrophils were also too low, a Neupogen shot again today as well.
He got his scheduled Aranesp shot today too.
Come on bone marrow, wake up!
Anytime now would be fine.
Okay, enough yukky news.
I'm happy to report that for the second week in a row, B felt good enough to take his U-Bass out on the town last Saturday night.
A beautiful cool Tucson evening on the patio of a local restaurant, filled with good friends, good food, the musical magic of John, Jeanne and our B.
It felt almost European, with guitars, sweet harmonies and of course, the wonderful added flavor of Jeanne's accordion.
Their playlist is an eclectic mix of Folk, traditional Spanish, Classic Standards and even a bit of Rock and Roll. Perfect.
Several groups of friends we hadn't seen since B became sick again last year showed up and it was simply wonderful to see them again. It felt a bit like the old days when we would all gather at gigs almost every weekend.
A really good time was had by all.
If you are a local Tucsonan, I encourage you to catch one of these shows next time. Send me a note (email) if you'd be interested in knowing when that'll be. (They play weekly, 5:30-8:30pm.)
You'll have to be the spontaneous type, as we usually aren't sure if B will be playing until we see how he's feeling the afternoon of the gig. But even if B's not playing, this sure makes for a nice evening out.
APRIL 26-Thursday-
Today's numbers:
Hemoglobin- 7.8 (decrease, 2 units of the red stuff needed, darn it)
Platelets- 8 (transfusion today)
Neutrophils- 1.56 (increase, Neupogen today)
White Blood Count- 2.93(increase)
Today was tough.
B's Hemoglobin and Platelets counts dropped, so he needed both platelets and red cells. And while his Neutrophils and White Blood Count didn't drop, those counts were still too low so he needed a Neupogen shot as well.
The Aranesp was able to give him 5 weeks in between red transfusions, but we actually were hoping it would keep him from needing any more red cells transfusions at all. Unfortunately, this was not the case.
B also had another bone marrow biopsy today to see if his condition has officially morphed into Myelodysplastic Syndrome.
This is a very uncomfortable test but B handled it in his usual brave way.
We are sure praying it doesn't show Myelodysplastic Syndrome. Although his marrow is behaving as if it has Myelodysplastic Syndrome, the last two bone marrow biopsies haven't shown it to officially be that disease. We need another negative for Myelodysplastic Syndrome result. That result would continue to provide us hope that B's marrow is still just in the waiting-to-wake-up mode. Myelodysplastic Syndrome would be a very dangerous and scary diagnosis. We'll get the bone marrow biopsy results next week.
Please say an extra prayer that B does not have Myelodysplastic Syndrome.
Today, our daughter-in-law's Dad passed away from his cancer.
B and Fred have been fighting their cancers simultaneously all last year and B and I are heartbroken by his passing.
Fred found out a few weeks ago that his cancer had spread beyond hope of treatment and he was given only weeks to live. Since Fred got that news, B, emotionally, just hasn't been the same.
We love you Fred and we will miss you.
To say today was tough is an understatement. Today has been beyond tough.
APRIL 23-Monday-
Today's numbers:
Hemoglobin- 8.5 (increase)
Platelets- 25 (no transfusion today)
Neutrophils- 1.08 (decrease, Neupogen today)
White Blood Count- 2.89 (decrease)
No transfusions today! Cool!
Red count is still holding above the transfusion threshold of 8.0 and last Thursday's platelets seem to be holding on too.
All in all, a good day at the Doc's.
I think the healing music he was able to play over the weekend must have something to do with it.
Music. The mind, body and soul medicine. Yep.
APRIL 22-Sunday-
Last night, B played his cute little U-Bass at a gig with our friends John and Jeanne Ronstadt.
Initially, we thought he'd only do a set, but he ended up playing all three sets and he had a blast.
I made him take a stool to sit on, just in case, but he didn't need it. He felt good the whole night!
I was sure today he'd be toast, but so far he's still doing really good. He's had several good days in a row and we sure hope this trend continues.
Last night, B played his cute little U-Bass at a gig with our friends John and Jeanne Ronstadt.
Initially, we thought he'd only do a set, but he ended up playing all three sets and he had a blast.
I made him take a stool to sit on, just in case, but he didn't need it. He felt good the whole night!
I was sure today he'd be toast, but so far he's still doing really good. He's had several good days in a row and we sure hope this trend continues.
APRIL 20-Friday-
As I write this, B is running errands all by himself.
He wanted to get the car washed and a haircut, so off he went.
I'm nervous, but I know that this is exactly one of the things he needs to do to start finding ways to normalize his life.
He's feeling good today, has promised me he won't overdo it, so why the heck not.
Last night, B started talking about and showing me the progress he's making playing his music again. Chords he couldn't make a few weeks ago, he's able to make now. Progressions and runs that gave him trouble, are becoming easier.
His peripheral neuropathy hasn't gone away, he's just playing through the pain.
He hasn't graduated to steel strings yet, but he's making amazing progress.
I'm reminded of what he went through 7 years ago.
A lot of you may be familiar that, through an ironic twist of fate, B was diagnosed with vocal chord cancer in 2005. Our sweet singing B.
He underwent treatment and beat it, and the Docs were happy he came out of that cancer with his voice box intact. They told him, be thankful you can talk. Forget about singing.
When told his singing days were over, he refused to accept that. He instead sang and found his voice again, one note at a time. Not quite as many notes as before, but the richness and soul in that reborn singing, reflected an appreciation for that which he almost lost completely.
Now the fates are trying to take away his fingers with this persistant peripheral neuropathy.
But, once again, he's finding his voice. I know he will play guitar again.
And while it too may be different than before, I know, his playing will have a richness that will reflect his beautiful soul.
Our continued thanks to all of you who to include him in your daily thoughts and prayers.
APRIL 16-Monday-
Today's numbers:
Hemoglobin- 8.4 (decrease)
Platelets- 10 (transfusion today)
Neutrophils- 1.59 (Neupogen today)
White Blood Count- 2.68
Today's labs were a bit disappointing.
We were disappointed to see that Monday's platelet transfusion sure didn't last very long.
And the White Blood Count and Neutrophils were also lower than we'd like, so he got another Neupogen shot today to boost those counts.
Hemoglobin is still above 8.0, so at least he still didn't need red blood cells.
Tomorrow will mark one month without a transfusion of red blood. That's a good thing.
I guess when we see the low lab numbers, it can be disheartening because it means the bone marrow is still sleeping.
We keep waiting for that day when the numbers will start to show his bone marrow is rebounding, that this bumpy road he's traveling will start to smooth out.
For the most part, no matter what the labs say, B's tenacious spirit prevails, but there are days when keeping the spirits up is a bit more difficult than others.
So we moped for a nano second this morning, but were back in good spirits by noon.
Another new stringed instrument arrived yesterday and B is playing and singing as I write this update.
And, of course, he sounds really good.
A few of our grandkiddos came visiting last night, and our 12 year old granddaughter was just amazed by her grandpa's talent. She kept looking at me with her jaw dropped and a "can you believe it" look on her face as he played along with the music on American Idol.
And that's with debilitating peripheral neuropathy.
He really is amazing. In so many ways.
APRIL 16-Monday-
Today's numbers:
Hemoglobin- 8.9 (stable, Aranesp today)
Platelets- 11 (transfusion today)
Neutrophils- 1.52 (Neupogen today)
White Blood Count- 2.89
We heard last week that it's hard to tell how sick (or not sick) B is right now. Some who read this think he's gravely ill, skin and bones, in bed all the time, broke and all other kinds of stuff.
I guess everyone will interpret things differently, so I will try to clear a few things up, and let you know where we stand at the present time.
B still has a pretty serious bone marrow issue which requires transfusions on a regular basis, but in between transfusions, he feels pretty good for the most part. His blood condition is being managed.
He's not bedridden.
He's not skin and bones.
Our insurance is good, so his illness hasn't left us destitute or broke.
So, while he's not golfing, gigging or back to his old self yet, there are plenty of good hours in most of his days. He's enjoying the musical outlet his U-Bass guitar is providing and sings and plays each day for hours.
Occasionally he feels punky, but that's to be expected with the blood issues he's having.
We expect that someday, his bone marrow will wake up and start making blood cells again.
We expect his broken back will continue to heal.
We expect he will continue to slowly become stronger.
We expect his painful peripheral neuropathy will someday go away.
We still expect that, someday, he will recover completely.
We just can't predict when any of these things will happen.
So don't fret at these updates. For the most part, while things may be far from perfect, they are doable.
He's okay. I continue to see small improvements in his overall well being with each passing week. We remain hopeful the chemo was able to achieve remission from the Non-Hodgkins Lymphoma.
We seem to be going in the right direction, even if it's a real slow journey.
I would ask that when visiting this blog, before becoming alarmed (and perhaps alarming others), read a few of the last, most up-to-date, posts to get a true feel of where we are at the moment. B's journey has had it's ups and downs, but he's really doing okay. And if something changes, I will make it clear where we stand.
A bit of good news this week from Doc Chen is that B's bone marrow isn't completely asleep. She said if his marrow was completely damaged, the Aranesp wouldn't be working.
This information tidbit put a big smile on B's face and some more hope in his heart.
APRIL 12-Thursday-
Today's numbers:
Hemoglobin- 9.0 (stable)
Platelets- 13 (transfusion today)
Neutrophils- 2.41( Neupogen today)
White Blood Count- 3.86
Hemoglobin holding steady. It's been 3 weeks since any red blood transfusion has been needed!
The Aranesp continues to be helping B's bone marrow make red blood.
And it's great that, by not needing red blood transfusions, he's not adding to his iron overload issue. In fact, he's even using up some of his stored iron now because he's producing his own red blood. Really good news.
Platelets were low, but he went 5 whole days between transfusions (yippee!), so we sort of expected this.
Besides platelets, he also got a Neupogen shot to boost the Neutrophils a bit.
As you already know, B suffers from painful peripheral neuropathy.
To help control this pain, he wears a pain patch. It minimizes, but doesn't alleviate the pain completely. There have been a few times when B's wondered whether the patch was actually having any effect because the pain never really goes away.
We've been told (and have learned through experience), that managing neuropathic pain can be tricky and, what may work for one person, might not work for another. A pain patch, at least for B, seems to be the most effective, at least, in reducing his pain.
Anyway, day before yesterday, we found out the hard way that his pain patch is indeed doing something.
Somehow, his pain patch came off while he was sleeping and we didn't notice it.
After a very difficult day, with B sick in an unusual way, I discovered his patch was missing.
Let's just say, I think the time B spent without the patch has somewhat silenced his doubts about it's effectiveness.
And if there's a next time when, seemingly out of nowhere, B's pain suddenly ratchets up the way it did, the FIRST thing I will looking for is to make sure his pain patch is still present and accounted for.
He's feeling much, much, much better now and we're looking forward to a nice relaxing weekend.
A gentle reminder to keep him in your thoughts and prayers.
We are still asking for his bone marrow to wake up and start making blood.
And we still believe, it's just a matter of time before it will.
APRIL 9-Monday-
Today's numbers:
Hemoglobin- 9.0 (increase)
Platelets- 22 (no transfusion today)
Neutrophils- 1.65 (decrease, Neupogen today)
White Blood Count- 3.39 (decrease)
B's hemoglobin increased a bit, so.... still no red blood cell transfusion needed!
Two and a half weeks and counting since he's needed red blood. The Aranesp is doing it's job. That's a really good thing.
Also, no platelet transfusion was needed today either, although I'm sure sometime this week he will need at least a unit of those fellows. In the meantime, he'll be his extra careful self and resist juggling knives and swords.
I'll keep a eye on him for signs of petechiae that might indicate his platelets are too low so I can take him in earlier than scheduled if need be.
White Blood Count and Neutrophils went down a bit so he got a Neupogen boost today.
He continues to be an inspiration to all who know him with the grace and dignity and sense of humor he shows each and every day.
He really is superman.
We got home early today from the Doc's which was a good thing because our good friend (and former bandmate of B's from his 70's bands 'Hit and Run' and 'Tunesmith') popped in today from LA for a visit.
It was great seeing Peaches again.
APRIL 6-Friday-
Today's numbers:
Hemoglobin- 8.6 (unchanged)
Platelets- 17 (transfusion today)
Neutrophils- 6.92( big increase)
White Blood Count- 8.52 (big increase)
Bummer. B didn't get his second week of needing only one platelet transfusion.
Last week he went Monday through Monday with just one unit. Not this week.
He needed a platelet boost today to get him through the weekend.
But we're actually okay with it because the count that we definitely needed to stay above transfusion level, his Hemoglobin, stayed the same!
Which means....taaa daaah!... he's now gone two whole weeks without needing a red blood cell transfusion!
Red blood transfusions for B are dangerous now so this is a big deal.
Yippee!! That's great news on this Good Friday.
His White Blood Count and Neutrophils responded big time to Wednesday's Neupogen shot. Glad to see those counts are high because B's made plans to go see a guy movie with his brothers tomorrow.
He needs his immune system firing on all cylinders if he's going to be at the mall with the masses.
I have to say I've become so used to being with him wherever he goes, it's going to be very weird when he's out and about with the guys.
I'm thinking while he's out, I might go about setting up a small painting studio area in the house. That'll keep me occupied. Besides, I'm curious to see if I still know how to paint.
One thing I've been meaning to mention lately is B's heart rate status.
His sinus tachycardia is gone.
His resting heart rate is now 80-95 beats per minute, well within the normal range. That's so much better than the 110-120 it was for months and months following the chemotherapy. Glad that chemo side effect issue seems to have finally resolved.
That gives me hope that it won't be long before the chemo's other side effects, that still have a hold on B's bone marrow and his painful hands and feet, may also start to diminish as well.
I still believe it's just a matter of time, but he will be healed.
He will be well again.
B and I wish all of you a happy, peaceful Easter weekend.
APRIL 4-Wednesday-
Today's numbers:
Hemoglobin- 8.6 (decrease)
Platelets- 31 (no transfusion today)
Neutrophils- 1.80 (decrease, Neupogen today)
White Blood Count- 3.71 (decrease)
Labs sort of stable.
Neutrophils down enough to warrant a Neupogen shot.
Monday's platelet transfusion is reflected in today's platelet count. Not sure if this number will hold him through the week though.
I bet he'll need another platelet transfusion before the weekend.
Hemoglobin also dropped, but is still above the transfusion cutoff count of 8.0.
This is the count we especially need to not see drop any further. We are hopeful the Aranesp will continue to keep B from needing ANY MORE red blood cell transfusions from now on. The red cell transfusions have become downright dangerous for B with his iron overload issue.
APRIL 2-Monday-
Today's numbers:
Hemoglobin- 9.5 (increase, Aranesp today)
Platelets- 16 (transfusion today)
Neutrophils- 2.61(no change)
White Blood Count- 4.70 (increase)
Today was a good day.
Last Monday's platelet transfusion lasted a whole week! First time in 10 weeks.
He's been getting 2 platelet transfusions a week since early January.
His count was low today, as we expected it would be (16), but we were pleased to see this number only dropped by 6 since last Thursday's count of 22.
We were afraid it would be single digits or even zero today because it had been a whole week since he got platelets.
His hemoglobin actually increased without a red blood cell transfusion so it looks like the Aranesp is working. He got another Aranesp injection today (via port).
We are becoming familiar with the protocol for determining when (and if) B will have an Aranesp injection. Because of it's black box warnings, I hope he can put some space in between injections.
The cutoff number for giving him the injection will be a Hemoglobin count of 10. If his hemoglobin is above 10 ( and it's been two weeks since the last shot), he will not get the Aranesp.
If it's been two weeks since his last dose ( and Hemoglobin's below 10) she will give him the Aranesp injection.
If he can become red blood transfusion free, he at least won't be adding to his iron overload problem and will even be using his iron up a bit as he makes his own red cells (iron is a necessary component of blood production).
His Neutrophils stayed the same, so last Thursday's Neupogen shot held all weekend too. And it was decided to not give him Neupogen today since he's in the normal zone.
We'll see where his numbers all are again with labs later this week.
I sure hope he gets another week, like last week, with all his blood counts not dropping off a cliff without the help of a shot or transfusion.
So here's to today's Platelets transfusion lasting a whole week, continued increases in his Hemoglobin, and stable Neutrophils.
We are cautiously optimistic.
MARCH 29-Thursday-
Today's numbers:
Hemoglobin- 9.0 (increase)
Platelets- 22 (no transfusion today)
Neutrophils- 2.61(increase)
White Blood Count- 4.42 (increase)
For the first time in months, it looks like B will only be having one platelet transfusion this week. This last Monday's. Doc Chen wants him to go the weekend without a transfusion even though today's platelet count is a bit low (22).
While B is excited he's getting a few extra days between transfusions, we both are a bit nervous that he may fall dangerously low by next Monday. We'll see. Once again he's promised me he won't run with scissors this weekend.
His red count went up a bit, so maybe the Aranesp is finally kicking in.
We are cautiously optimistic that the transfusion train he's been on for months may be slowing down a bit.
He did get a Neupogen shot today to tide him over the weekend. Strep throat and the flu has hit Arizona big time lately so we definitely need to keep his immune system firing on all cylinders.
Here's to an uneventful, peaceful, healing weekend.
Your prayers seem to be working so please keep them coming.
And, if you could, please add prayers for our grandkid's other grandpa, Fred.
Fred's cancer has spread and he's in fight for his life now.
Not sure he can be cured at this point, but we still believe in miracles. Please pray Fred finds peace and courage, with no pain or suffering, and give strength to our daughter-in-law Lisa, her Mom, Linda, and the rest of their family, including the grandkids. It's been tough on them having two grandpa's fighting cancer at the same time.
Thank you.
MARCH 26-Monday-
Today's numbers:
Hemoglobin- 8.6 (increase)
Platelets- 14 (transfusion today)
Neutrophils- 2.38 (huge decrease, but within normal)
White Blood Count- 3.98 (big decrease, but still almost normal)
Friday's red cell transfusion brought his hemoglobin up a bit. We're still waiting for the Aranesp to stimulate his bone marrow into making more red blood. Doc Chen said once it starts working it could also help bump his platelets up a bit.
He had to have a unit of platelets today and for the first time, he had an adverse reaction. It was on the way home from the transfusion center. Chills and shaking, back and head ache, and a fever. Gave him more Benedryl (they always pre-medicate with Tylenol and Benedryl before transfusions but this time it wasn't enough) and he slept for a few hours. He was okay by evening although he did run a fever 'til about midnight.
Our Colorado grandkids were here this last weekend and B was well enough to spend some good time with them. He did tire out quickly, but he was feeling much better this visit.
The last two times they've come down from Colorado to visit family, B was in the hospital or not feeling well enough to be able to see them.
It was a really nice visit.
MARCH 23-Friday-
Today's numbers:
Hemoglobin- 7.7 (decrease, transfuse 1 unit red blood today)
Platelets- 21 (no transfusion today)
Neutrophils- 19.46 (huge increase)
White Blood Count- 22.06 (huge increase)
Doc Chen didn't seem too concerned with the huge increases of the White Blood Count or Neutrophils. She said it could be related to the Aranesp somehow stimulating the marrow.
He did get a Neupogen shot yesterday, but these totals are crazy high.
Maybe the IVig infusion played a part too, but that's pure speculation on my part.
B needed a unit of packed red blood cells again today. Bummer.
Even though it's only been 4 days since he had his first treatment, we were hoping the Aranesp would start working early on stimulating red blood cell production.
I guess it's going to take the standard 1-2 weeks to see any Hemoglobin changes.
But that may mean there's a good chance he will see an upward trend with his Hemoglobin count sometime next week. We sure hope so.
We don't want any more red blood transfusions.
That would be great.
B probably should have had platelets today, but Doc Chen decided to wait.
So, he will once again have to be extra careful not to bump his noggin or run with scissors this weekend.
B has recently been able to play a little music with friends on the weekends and it has revitalized him.
While he's still very sick (completely transfusion dependent as well as dealing with neuropathic pain), the power of this music has lifted him.
His spirits have definitely gotten a lot better.
It's been great to see him enjoying himself , singing and playing his new little U-Bass guitar.
It has huge, rubber strings that don't hurt his pain sensitive fingers when he plays.
I know this has been great therapy for him.
Physically and emotionally.
I can see it in his face. He's a happy boy again.
MARCH 22-Thursday-
No labs today.
Monday's labs showed B's IGg (Immunoglobulin) levels were low again so he had to have another IVig infusion today.
This was his third IVig treatment since Doc Chen took over his care in December.
Immunoglobulin levels play a big role in fighting infections so it's very important to keep him in the normal range.
He had reactions the first two times he was given this blood by product, but this time he tolerated it okay. They kept the rate relatively slow so it took over 5 hours to infuse.
He also got a Neupogen shot.
MARCH 21-Wednesday-
Today's numbers:
Hemoglobin- 8.0 (slight decrease, transfuse soon)
Platelets- 18 (transfusion today)
Neutrophils- 2.26 (big decrease, but still in normal range)
White Blood Count- 3.90 (big decrease)
B learned today that a chromosome study done last week shows that he does have Hereditary Hemochromatosis. Both his Mom and Dad carried the gene and passed it on to him.
This complicates B's high iron totals as he will continue to have iron issues even if he becomes red blood transfusion free.
I contacted B's primary care physician to see if he had ever done an iron study of B's blood in the past and found one had indeed been done in June of 2009.
Those 2009 results showed only marginally high iron results, nothing like the levels he's got now.
His ferratin level in 2009 was 325, with a 25% iron saturation rate vs. the levels he's got now-a ferratin level of 2700 with an 81% saturation rate. Those counts right now are ridiculously high. Someone told us he could set off metal detectors, but I don't think that's true.
Doc Chen still wants his Platelets and Neutrophils to be in a more normal range before she treats him for the iron issue. The chelating drugs are just too dangerous for B at this time.
Finding those 2009 results help show that these extremely high levels may be a recent thing, a result of the red blood cell transfusions he started getting in October 2011, and not something he's had for a long time.
Still, it was disappointing to learn he has yet another issue.
MARCH 19-Monday-
Today's numbers:
Hemoglobin- 8.2 (holding steady, but will need a unit soon, Aranesp today)
Platelets- 26 (still above 20 so no transfusion today)
Neutrophils- 9.55 (big increase)
White Blood Count- 11.99 (big increase)
I am encouraged that B may get 4 days between platelet transfusions. We'll see.
I'm hoping his platelet freefalls will start slowing down a bit.
I still firmly believe he will get better.
The setbacks he's had lately do scare me, but it the grand scheme of things, I still see them as temporary setbacks.
I believe he will get his miracle and it won't be long before he starts getting a week between platelet transfusions. Then two weeks and so on.
With regard to his red blood counts and his high iron issue, B has decided to roll the dice on Aranesp.
He had his first dose today.
I'm nervous about this, but this drug seems to be the lesser of the evils that he has to chose from.
Aranesp is supposed to encourage B's bone marrow to start producing it's own red blood.
Red blood production uses iron.
If the Aranesp works, in theory he could start to normalize his crazy high iron counts on his own, without the need for the super scary Exjade or Ferriprox iron chelating drugs.
The Exjade was frightening because of B's low platelet counts and an internal bleed risk, but the Ferriprox affects neutrophils and puts B in danger of a fatal infection of some sort.
The Aranesp was his choice and if it works, he should start seeing improvements in the hemoglobin counts within a few weeks.
The folks who follow me on Facebook know that yesterday, B picked up his guitar for the first time in 7months.
While he looked like his old self when he was noodling, his comments while playing indicated he sure wasn't feeling like his old self.
He said bending the strings took all his strength and he kept indicating that his fingers weren't behaving right, that each one felt like it was 2 inches wide. He says they feel more like claws than fingers.
He also said it hurt like the dickens (duh! ...can you say neuropathy and no calluses).
He believes it will take some work to get back to playing like his old self but he also said "you gotta start somewhere".
He told me the story of how, when Eric Clapton got arthritis in his fingers, he became known as 'slow hand', playing differently, but just as tasty.
B says he will have to learn how and what he will be able to play with his new 'wooden' fingers, but he thinks he will also find a way to make music that is still tasty.
I have no doubt.
MARCH 16-Friday-
Today's numbers:
Hemoglobin- 7.9 (still below 8 even with a unit on Tuesday so another unit today)
Platelets- 20 (transfuse again today)
Neutrophils- 4.03 (increase, no Neupogen today)
White Blood Count- 5.56 (increase)
Today B got a unit of platelets and a unit of packed red blood.
I guess the transfusions he got on Monday didn't have much staying power.
No Neupogen shot today. I will give him one at home on Sunday.
While I'm still a bit squeamish about this shot giving thing, I've found that if I just close my eyes and get it done, it's not so bad. (Just kidding)
MARCH 12-Monday-
Today's numbers:
Hemoglobin- 7.9 (decrease, transfusion tomorrow)
Platelets- 20 (transfusion tomorrow)
Neutrophils- 1.84 (slight increase, Neupogen today)
White Blood Count- 3.73 (slight increase)
Today's Doctor's visit went better than we expected.
We got a few positive answers to the tough questions we had for Doc Chen regarding B's iron issue.
And, it was decided that B will not be taking the scary drug Exjade.
Thank goodness!!
There is another chelating drug, Ferriprox, that may be available and it's side effects don't seem nearly as scary as the drug, Exjade's, were. But this new drug does has some difficult side effects of it's own and we don't know if we can even get it yet.
It was just approved by the FDA in Oct 2011. The Doc has started looking into it and we will know more by next week.
Another good thing we were able to clarify is that B may have a little wiggle room with regards to the amount of time it takes for high iron levels to start causing damage to his body. Of course, the quicker he's treated, the better, but he shouldn't (in theory) have damage to his organs this soon if this iron overload is from transfusions that began in Oct 2011.
But his iron saturation is ridiculously high (81%) and we can't wait too long to start bringing the numbers down. We'd like to start treatment within a week or two, but this wiggle room does allow us to investigate all the options and make more informed decisions.
One idea is to perhaps start a drug, Aranesp, to help with red blood production so that he may eventually not need transfusions for red cells. But it too, has a black box warnings, and is scary in it's own right.
I'm telling you, the warning in the Exjade's black box almost mentioned B by name, it was like he was the poster boy for the person most likely to die from Exjade side effects. We were beyond scared when it seemed that this drug was his only option.
The side effects for Ferriprox seem more manageable and less deadly for B.
If B starts using the blood builder Aranesp, and if it works, it would mean no more red blood transfusions and at least we would stop adding to B's high iron levels.
Then, if this brand new chelating drug, Ferriprox, can be used safely on B to start binding and removing the excess iron, he can start lowering those levels.
If.
If Ferriprox is safe for B.
If we can even get Ferriprox.
If we decide to roll the dice on Aranesp.
The plan is a bit fuzzy for now, but will become clearer the more we learn about these two new proposed drugs. They must be safe for B, so I'm doing my homework.
So, while he's still in danger, today's information did provide some needed hope that there's something besides Exjade to treat this iron issue.
We had a Sunday prayer ceremony at our church here in Tucson, and people from all over the country joined with us that whole day in simultaneous prayers for B's recovery. It was a powerful thing, with even agnostics putting their hands together.
And, I believe it had a lot to do with going from being, damned if you do, damned if you don't, to maybe there is a way for B to get through this latest setback too.
Maybe he will get his miracle yet.
Keep praying.
MARCH 9-Friday-
Today's numbers:
Hemoglobin- 8.5 (decrease)
Platelets- 17 (transfusion today)
Neutrophils- 4.76 (increase)
White Blood Count- 6.68 (increase)
B got a Neupogen shot today even though his Neutrophil levels were pretty good.
He also got platelets.
B got a Neupogen shot today even though his Neutrophil levels were pretty good.
He also got platelets.
MARCH 7-Wednesday-part 2
I've never done two updates on the same day.
I guess no optimistic mood goes unpunished.
I finished the first update earlier this evening, then took my optimistic self to join B for a nice relaxing night of catching up on our favorite recorded TV shows.
Then Doc Chen called and I've pretty much been a wreck since.
If I were a person prone to cussing, this would be a run on sentence of every curse word I've ever heard in my whole life. Then I'd repeat it.
How on earth can this be happening to the most kind, amazing, gentle, brave, good natured, loving, man I've ever known?
How can the fates keep piling it on him?
I am stunned.
And scared.
And not so optimistic anymore.
In fact, I can hardly stop crying.
Monday, Doc Chen decided to check B's iron levels. I had asked if she had results yet for a copper level test I'd requested while he was in the hospital. She made a call and discovered that his copper levels were high. ( I thought they'd be low based on a bone marrow forum I'd wandered into that showed a correlation between peripheral neuropathy and low copper levels).
While we don't exactly know what high copper levels mean, perhaps nothing, that's not the issue here.
The issue is iron.
The high copper level result got Doc Chen to wondering if, because of all his red blood cell transfusions, B might also be high in iron. I guess if you have 20+ red blood cell transfusions you run the risk of a high iron count.
Results of the iron test done on Monday show high iron, for B, is an understatement.
He's critically high, so much so, he's in danger of organ damage
The official name is hemochromatosis.
And the one treatment available to him (a drug called Exjade), has the second highest rate of death as a complication of ANY drug currently on the market.
Especially if you have low platelets. And you are over the age of 55.
And he would have to be on it for a year or more to bring his current iron levels down.
He is processing all the facts, but I can tell you, this decision is not going to be easy.
Don't treat, and risk organ damage.
Treat and risk organ damage and fatal internal bleeding.
Actually , I don't even know if 'don't treat' is an option. That's how scary high (2700) his iron count is.
I'm leaning towards don't treat. This drug scares the you-know-what out of us.
We're in a maze and are running into walls at every turn. Not sure how to find the safest way out of this. I guess we'll know more when we see Doc Chen.
We need those prayers more than ever now.
And he needs a new miracle now.
We've been praying for bone marrow and neuropathic healing, but this new iron issue trumps all of those.
Please God, make him well. Please.
This was added when I removed the post temporarily to update the family first.
It's 5am on Thursday and I am temporarily deleting the second part of March 7th's post that I added late last night (after Doc Chen's phone call) until I have a chance to discuss it with all of the family. I'll repost it again later. It's too important to have them hear it through the grapevine. Some of you may have read it. Please keep it to yourself for today. Thanks.
MARCH 7-Wednesday-
Today's numbers:
Hemoglobin- 9.4 (increase)
Platelets- 29 (transfusion soon)
Neutrophils- 1.44 (big decrease)
White Blood Count- 3.56 (big decrease)
B's Neutrophils dropped, but the last Neupogen shot he got was the one I gave him on Sunday, so he was able to put a few days in between shots. He did get one today so we'll see how long it will last.
As I mentioned in my last post, we are looking for longer periods of time between the various supportive care treatments (transfusions and Neupogen shots), as indications of bone marrow recovery.
So far, we are status quo, no sign of recovery yet.
B has been able to add a few more good days to the string he started on Saturday.
He did have a hard afternoon yesterday, but I think it had a bit to do with what was on his schedule yesterday.
After 30+ years at IBM, he officially closed that chapter of his life yesterday. We took a few boxes to his office and packed it up. He also turned in his keys, his badge and his IBM laptop.
He's officially done at IBM.
I know this was a very emotional thing for him. And I think it contributed to his feeling funky yesterday.
He was soooo disappointed we didn't get a picture with all his coworkers/friends while he was there in his office. Maybe we can still find a way to get a pic with all the gang.
B says he's not going to miss the work part so much, but boy, he sure is going to miss the office gang. He really cares deeply for those folks.
Like I said, yesterday was tough.
Today was a bit weird.
We saw a neurologist to see if B's peripheral neuropathy could be helped along in the healing department in some way. B was so optimistic that this Doc could help, but the visit was a bust. She didn't give him any good news.
As a matter of fact, she made his situation seem more dismal than what he'd been thinking.
She told B that 2/3 of people with chemotherapy caused peripheral neuropathy don't ever recover from it, and that all you can do is manage the pain and other symptoms with meds. She told him that he may never get better.
I immediately begged to differ with her pessimistic outlook.
I told her that we prefer to focus on the positive outcomes, especially when it's a guessing game anyway.
I still believe with all my heart his peripheral neuropathy will get better.
It will take time, but he will be in the 1/3rd who do recover. I think it's too early to be emphasizing the negatives in my opinion. He's still well inside the recovery window of one year.
The folks at the AZ Cancer Center always seemed to take the optimistic approach, saying that while it could take some time, B would eventually recover from peripheral neuropathy.
More optimism, less pessimism is my motto right now.
I don't want B's good days weighed down with heavy news, especially when no one is sure.
Believe in miracles, believe in healing, believe, have hope, believe.
It makes the days a whole lot lighter than believing the worst.
I'm just saying.
MARCH 6-Tuesday-
Yesterday's numbers:
Hemoglobin- 9.2 (increase)
Platelets- 20 (transfusion today)
Neutrophils- 7.08 (big increase)
White Blood Count- 9.23 (big increase)
Didn't get this blog updated yesterday because I had a debilitating headache by the time we got home from the transfusion center.
It occurred to me (after I went to bed at 3pm leaving B to fend for himself for the first time in a long time) that I have been very lucky with my own health since B got sick.
My health has not gotten in the way of being able to care for B. Until yesterday.
He had to fend for himself all afternoon and evening. I was a lump.
He did fine, taking all his pills according to the pill schedule, reheating leftovers for dinner, even checking on me to see if he could help. I think it he even liked the role reversal, and I was thankful he was able to do it. Headache finally got better around 3am. It was a doozy.
He's doing good today. He's had about 3 good days in a row so far.
It's been a while since he's strung a few good days together.
Here's to adding a few more good day pearls to this string.
He still has the cough now and then, but the sputum test and xray were negative for a bacterial infection and pneumonia. His fevers have also abated for the most part, just the occasional low grade fever which could be attributed to any one of his transfusions and not the cough issue.
He got platelets yesterday, but most of the other blood counts were still looking good for now.
I'm looking for the day when one of his counts will finally hold strong on it's own, without the need for ongoing supportive care.
He gets red cells about every 10 days, platelets every 3 and Neupogen shots every other day or so to maintain his numbers. Without transfusions and Neupogen he would die.
The theory is any day now his marrow could start working a bit, and he will start producing his own blood cells. We don't really know which one (red, white or platelets) will be the first to show improvement, but when one of them starts holding steady without needing a transfusion or a shot, that will be a great sign.
That would be an incredible sign.
I'll keep you posted.
MARCH 2-Friday-
Today's numbers:
Hemoglobin- 8.8 (decrease)
Platelets- 25 (transfusion today)
Neutrophils- 2.85 (decrease, Neupogen shot today)
White Blood Count- 4.38 ( decrease)
B's feeling better, but still running a low grade fever off and on. He's also still coughing pretty hard occasionally, so he had three platelet transfusions this week. That's a record, but it has to do with the Doc trying to avoid a lung bleed that heavy coughing could produce. He also had 2 units of red cells, so he had a total of 4 transfusions this week. Crazy.
A few days ago Doc Chen compared B's progress these last few months to the stock market.
Ups and downs to be sure, but still trending upward.
And, while he can change, like the weather, in a nano second, from good to bad and back again, he is physically better overall in some aspects.
His broken back is better. He walks without a cane now.
His sense of taste and a few other bothersome, but not life threatening, chemotherapy related side effects are better.
His autonomic nueropathy is somewhat better (although not altogether gone).
Unfortunately the peripheral neuropathy remains unchanged.
B's sleepy, weak bone marrow's stem cells and the Pancytopenia their sluggishness has created, has been the cause of most of B's recent downtrends.
That one dangerous, stubborn, and potentially life threatening side effect just keeps hanging on.
Take the bone marrow issue away and he'd be doing pretty good.
In fact, our last 16 day hospital stay was a result of trying to jump start his marrow with Vidaza, a treatment that held (and maybe still holds?) the potential for helping his marrow recover, but in the short term, caused all B's blood counts to drop so dangerously low, he needed the meticulous care hospitalization provided.
We were lucky he didn't get a life threatening infection for the 10+ days his Neutrophils were at zero.
Making decisions about new treatment ideas that are being presented to us has been tough.
Do we try other blood stimulating treatments, or wait and see?
We have now decided to take the wait and see approach.
At least for the next few months.
There are drugs to help with red blood production, but they come with what are called 'black box' warnings. Like, you could die from this stuff.
It seems that for B, the worst case side effect scenarios seem to be the norm, so we are opting to not treat anymore with drugs that could damage, and are going to take a more cautious approach.
But the cautious approach too, has risks.
Transfusion supportive care can not go on forever.
We've been told it's just a matter of time until you get that serious blood transfusion related infection and then you're really in trouble.
But we believe, and so does Doc Chen, that we are still in the window of probability that B's bone marrow could spontaneously recover from the toxic side effects of the chemotherapy he had July, August, September and October of last year.
The standard answer when we ask about a time frame to see improvement with the bone marrow is “six months to a year”.
We're still within that window.
It's been 6 months.
So, we're rolling th dice, and praying that we are making the right decision by taking the wait and see approach for the next few months.
I know I sound like a broken record but we really need that darn bone marrow to
WAKE UP!
That's our next focused prayer request.
After the focused prayers and positive energy vibes by a great number of friends and strangers, we finally got our Neutrophils.
Now it's time to focus that power and ask for bone marrow recovery.
"Come on B's bone marrow, wake up and start making platelets, red cells and white cells again. Help him get off the transfusion train he's been riding these last 5 months.
Amen."
Thanks everyone.
FEBRUARY 29- Wednesday
Today's numbers:
Hemoglobin- 9.6 (increase)
Platelets- 23 (transfusion today)
Neutrophils- 7.08 (big increase)
White Blood Count- 9.09( big increase)
Okay, I know the Neutrophil and White Blood Count numbers look great, but what they are saying is B is definitely fighting a infection of some kind.
Probably in his lung. Hopefully not pneumonia.
It's a good thing he has the ability to respond to the infection, but it's not a good thing he's sick.
We went to see Doc Chen first thing today. He had a chest xray and a sputum culture and he's now on antibiotics.
We don't have any test results yet.
He also got more platelets today, because the Doc doesn't want him to bleed in his lungs from coughing.
B looks and feels sick. I was sure he'd be readmitted to the hospital today, but that didn't happen.
At least not yet, but the night is still young.
I will watch him all night, and if the fever spikes or he takes a turn, off we'll go.
House sitter's on standby, my bag is packed.
I'll keep you posted.
Update: March 1, 7:40 am- He did okay throughout the night. Fever never higher than 99.6. He says he's feeling a bit better too, so maybe he's dodged another bullet. He's sleeping now, and we'll see how the day unfolds once he's up. But for now, all is quiet.
FEBRUARY 28-Tuesday-
No labs today.
B got his 2 units of red cells and his Nuepogen shot.
He had a temperature (100.0) before the transfusion even started, which was disconcerting.
He said he didn't feel particularly different and didn't think he was sick.
While B was being transfused, our daughter Casey, nephew Jamie and B's sister, Kathy, stopped by the transfusion center with cards, food and chocolate. They definitely broke up the day, helping make the 6 hours go by quicker with all the birthday banter and fun.
B's brother Jay came over to our house in the evening and grilled a steak for B. He's been craving a steak for a while now. I think B's low red counts may have something to do with this craving.
I was keeping track of the fever situation after we came home and sure enough, it came back in the evening.
B also suddenly developed a productive cough. A scary sounding cough, especially with his lung situation being what it is.
I called Doc Chen, and got a hospital/no hospital plan for the night. If the fever gets too high, or if he starts to seem really ill, go. If not, tough it out 'til morning.
If we stay home tonight, we will go in to see Doc Chen first thing tomorrow.
FEBRUARY 27-Monday-
Today's numbers:
Hemoglobin- 7.9 (decrease, transfusion tomorrow)
Platelets- 21 (decrease, transfusion today)
Neutrophils- 0.91 (decrease)
White Blood Count- 2.43 (decrease)
B got his three day weekend free from all the medical gobbledygook he's been inundated with pretty much non-stop these last months.
But, it came with a cost.
All his counts plummeted.
He had a nice weekend and we even went out on a 'date' Saturday night to see some good friends do some singing and playing at a local restaurant.
Sunday, he was definitely tired and weak, but otherwise felt okay, and spent the day resting.
Good thing, 'cause now he's playing catch-up, trying to get his counts back from the depths.
He's getting platelets today, and of course a Neupogen shot.
On tomorrow's menu are 2 units of red blood cells and another Neupogen shot.
Tomorrow is B's birthday.
I'm sure he's tickled pink that he gets to spend it getting a 6 hour transfusion.
I hope we'll find time for a little celebrating tomorrow at some point, but it will be, what it will be.
We'll make the most of whatever the day presents.
FEBRUARY 23-Thursday-
Today's numbers:
Hemoglobin- 9.0 (decrease)
Platelets- 23 (decrease, get transfusion today)
Neutrophils- 3.07 (woo hoo!)
White Blood Count- 5.29 (increase)
Wow! Great Neutrophils number!
Doc gave him another Neupogen shot to last the weekend. She's hoping B can have the next three days off, away from Docs, labs and transfusions.
Platelets continue to slowly drop after each transfusion. B's getting the platelet transfusion today too, so maybe he will get these next few days off. We'll take it a day at a time.
We need these transfusions to last longer. He's has to get them so often now and the risk is high for a transfusion related setback the more he has to have. Doc Chen has basically said she doesn't want to do any more Vidaza treatments on B again. Only supportive care until his marrow starts to work again.
We are still hopeful that either the Vidaza will kick start it or that B's marrow will begin recovery on it's own soon.
The autonomic nueropathy seems better. His tachycardia has diminished. So maybe soon, the other chemotherapy side effects will also start to diminish.
FEBRUARY 22-Wednesday-
Today's numbers:
Hemoglobin- 9.0 (decrease)
Platelets- 33
Neutrophils- 1.78 (a small decrease)
White Blood Count- 3.49 (decrease)
IGg levels are good. (793). Another important blood number we watch semi regularly.
Small decreases in most of today's bloodwork numbers.
Platelets are higher because of Monday's transfusion.
He got a Neupogen shot yesterday, so I don't know why the Neutrophils came down a bit.
He got another Neupogen shot today so hopefully we'll see an increase again.
FEBRUARY 20-Monday-
Today's numbers:
Hemoglobin- 10.6 (decrease)
Platelets- 11 (pre-transfusion today)
Neutrophils- 1.99 (wow!! finally in the low normal range)
White Blood Count- 3.76 (increase)
This neutrophil count was just what we were looking for!
They were 1.99, in the lower end of normal range (1.8-7.8) , but still normal.
He did need daily Neupogen shots to help get it in the good zone, but hopefully, won't need as many shots to maintain a good count. Doc says the White Blood Count/Neutrophils will be the first blood component to bounce back after Vidaza.
Oh, and I didn't have to give him a Sunday Neupogen shot.
It took insurance too long to okay the home injection, and we didn't really want to pay the $5800 the shot would cost without insurance. Doc Chen said we could skip the Sunday shot if it wasn't approved in time.
B was really disappointed I didn't get to show off my newly acquired injection skills. Right.
While it was great to be home this weekend, B was feeling just so so.
He never ran a fever, so I didn't have to take him back to the hospital, but he was lethargic and feeling punky the whole time.
He slept a lot, me waking him every few hours to make him drink liquids so he wouldn't dehydrate.
He was finally feeling a bit better this morning before the Doc's visit, then really perked up when he saw the Neutrophil count.
He did need a platelet transfusion again.
Platelets are the second blood component that should start working if the Vidaza treatment is going to show effectiveness treating his weak bone marrow.
Platelets are the second blood component that should start working if the Vidaza treatment is going to show effectiveness treating his weak bone marrow.
We really don't know how long it will take to find out if the Vidaza treatment has even worked or not.
Finally, while B's Hemoglobin dropped a bit, it held above transfusion level, so that was good. Since this is the last blood component expected to respond to Vidaza, we know his hemoglobin will probably continue to fall for a while, and that he will get packed red blood cells when that count drops below 8.0.
Unless.
Unless we get the miracle we are praying for and soon all his blood levels start to be normal!
Come on bone marrow!
Please wake up. Please.
Amen.
FEBRUARY 17-Friday-
No more daily labs, so my updates here won't be daily either.
I will update new lab results on the days we have them.
He's feeling really good considering all that he's dealing with. Looking forward to a peaceful, restful weekend at HOME!!! Yes!
Thanks for all the thoughts, prayers, emails, phone calls, cards, and well wishes throughout this latest bump in the road to B's recovery.
May the journey ahead be smooth ... and swiftly lead us to... working bone marrow and neuropathic healing.
Amen.
FEBRUARY 16th-Thursday-
Today's numbers:
Hemoglobin- 12.0 (increase, dehydration?)
Platelets- 19 (pre-transfusion)
Neutrophils 0.8 (woohooo!)
White Blood Count -2.61 (increase)
Todays's numbers were posted later in the day because….
Hemoglobin- 12.0 (increase, dehydration?)
Platelets- 19 (pre-transfusion)
Neutrophils 0.8 (woohooo!)
White Blood Count -2.61 (increase)
Todays's numbers were posted later in the day because….
WE'RE HOME!!!
We won't have labs done at 5am anymore, but as soon as I know lab results, later today, I'll pass them on to you.
We were sure hoping the Neutrophils would hold (they did!!) so we wouldn't have to go back for another stay at the Hospital Hilton.
The staff was great, but there's no place like home!!!
The staff was great, but there's no place like home!!!
It was awesome being home. Nothing like a home cooked dinner, our sweet puppy and our big, soft bed!!!
B didn't feel good when we first got home yesterday afternoon and I was worried we may have come home too early, but he did okay throughout the night (no fevers), so here's hoping he continues to improve.
Afternoon update-
He kept improving throughout the day and feels pretty darn good considering.
He's napping so he'll have energy to watch our Arizona Wildcats play basketball tonight.
On today's menu were Platelets, and a Neupogen shot.
Afternoon update-
He kept improving throughout the day and feels pretty darn good considering.
He's napping so he'll have energy to watch our Arizona Wildcats play basketball tonight.
On today's menu were Platelets, and a Neupogen shot.
I had to take a quick shot givin' lesson today 'cause it looks like I'll be doing the weekend Neupogen shots.
I must say, B doesn't think I can do it and is a bit uneasy about me sticking him with a needle.
There's true fright in his eyes when I'm holding the needle, but I know I can do it just as well as the nurses. (Power of postive thinking being applied here).
Relax B, it'll be ok. (please?)
Later, taters.
I must say, B doesn't think I can do it and is a bit uneasy about me sticking him with a needle.
There's true fright in his eyes when I'm holding the needle, but I know I can do it just as well as the nurses. (Power of postive thinking being applied here).
Relax B, it'll be ok. (please?)
Later, taters.
FEBRUARY 15-Wednesday-
Today's numbers:
Hemoglobin- 10.5 (received 2 units yesterday)
Platelets- 30 (decrease)
Neutrophils- 0.5 (unchanged)
White Blood Count- 1.6 (decrease)
Disappointing numbers today.
We were hoping for more increases, but that didn't happen.
At least the neutrophils didn't drop, but the WBC drop is suspicious.
Not sure we will go home as scheduled since the numbers aren't so good.
We're fine with a cautious approach.
We don't want any infection related setbacks.
FEBRUARY 14-Tuesday-
Today's Numbers-
Hemoglobin- 6.9 (Transfusion today)
Platelets- 49
Neutrophils- 0.5 (Yippee!)
White Blood Count- 2.3
B's Hemoglobin dropped quite a bit, so he's getting two units of packed red blood cells today. Hemoglobin will be the last blood component to bounce back from the Vidaza treatment, so this will probably be the norm for a while.
He got platelets yesterday and his platelet number today reflects that.
His Neutrophils have more than doubled! Slowly, but surely, they are climbing. They still have a way to go to be in the normal range (1.8-7.8), but thankfully, they didn't decline.
We hold our breath each morning when we get the lab report, almost afraid to look.
His WBC more than doubled too. Here's hoping tomorrow's counts continue to show improvement.
We love Doc Chen.
She is so positive, thorough, friendly, down to earth and scary smart.
She is not ego driven and, she doesn't roll her eyes or think I'm a nut when I ask her strange, off the wall questions.
Last night, I decided to google 'how long for bone marrow recovery from Vidaza?'.
I ended up in a forum on Vidaza where actual patients were reporting on their own personal experiences. All of them had Myelodysplastic Syndrome (which B doesn't have) and had had relatively positive success with the Vidaza treatment.
That forum lead me to another forum, Marrowforums, where I discovered quite a bit of talk about the effects of copper deficiency and it's relation to bone marrow suppression and peripheral neuropathy.
I was surprised to see a connection between these two disorders, and so, I decided to mention it to Doc Chen this morning.
She had not heard of copper deficiency playing a role with these two things, but rather than dismissing me and my googled findings, she listened and considered what I was reporting.
She thinks that a copper supplement "won't hurt" and she said she would order a copper levels blood test for B. She added, "who knows, maybe I will learn something new here".
I'm fairly sure a lot of other Docs would have poo-pawed any google search related suggestions by a layman and I'm impressed she didn't.
She's really something and we are sooooo glad she's in B's corner.
She thinks if we get more good labs tomorrow WE WILL GO HOME!!!
B will continue to do outpatient labs everyday, with transfusions as needed, and I will give B his weekend Neupogen shots.
Wow. Today is day 15 here. It will be awesome to finally go home!
Please keep your prayers and positive energy flowing B's way.
We are still looking for our miracle, that this Vidaza treatment will bring his bone marrow back to life, and he will be transfusion free someday in the near future.
And maybe, just maybe, a copper supplement, along with foods, rich in copper, may help him in his recovery from both Pancytopenia and Peripheral Neuropathy.
Wouldn't that be a trip?
And maybe, just maybe, a copper supplement, along with foods, rich in copper, may help him in his recovery from both Pancytopenia and Peripheral Neuropathy.
Wouldn't that be a trip?
FEBRUARY 13-Monday-
Today's Numbers:
Hemoglobin- 8.8
Platelets- 20 (Transfusion underway)
Neutrophils- 0.2White Blood Count- 1.1
Because B is somewhat prone to nosebleeds right now, Doc Chen has raised her platelet count transfusion threshold to 20 (up from 15). So he's getting a unit of platelets as I update this morning. Fortunately, yesterday's little nosebleed subsided quickly on it's own and wasn't an issue.
Hemoglobin dropped a smidge, but that transfusion threshold is 8.0, so he's okay there, no packed red blood cell transfusion today.
And…..taa... daa!!!!!…. our first little neutrophil has a buddy!!
Let's hope tomorrow, they throw a party and a whole lot more friends join them!
FEBRUARY 12-Sunday-
Today's numbers:
Hemoglobin- 9.2Platelets- 27
Neutrophils- 0.1
White Blood Count-0.7
We got the lab results late today.
And I'll be adding the White Blood Count numbers to the lists.
That number is tied to the neutrophils. Neutrophils make up a percentage of the WBC and there's a formula that is used to find the Neutrophil count based on the WBC. It's complicated and not sinking in to my age challenged grey cells. Disappointing to me, 'cause I used to be pretty good at math. Was actually one of my favorite subjects, but I guess, use it or lose it, may be at play here.
The Doc tried to explained it, sort of (once, quickly), but it quite literally didn't make sense to me. Yet. So, I'll keep trying to figure it out, and if it becomes clearer to me, I'll try to explain it to you. If.
B will probably get Platelets tomorrow. Although, for the last hour or so his nose has been threatening to bleed again, so he may even get some tonight.
I'm glad to see his Hemoglobin holding steady.
I asked the Doc yesterday in what order would the blood components start to improve post Vidaza. Which one will be the first to recover? She said it will probably be the WBC/Neutrophils first, followed by the Platelets, then the Hemoglobin.
So far, none of them are showing any improvement of significance.
So, we'll keep waiting.
While we're doing okay playing this waiting game, we're really ready for a change.
Vidaza recovery is supposed to take 1-4 weeks and we are at almost 3 weeks since the last day of treatment.
I guess any day now. Any day.
FEBRUARY 11-Saturday-
Today's numbers:
Hemoglobin-8.9
Platelets-46
Neutrophils-0.1
WBC-0.8
WBC-0.8
Not much of a change. The platelets dropped, but we sort of expect that to happen. The platelets will probably be the last blood component to recover from the Vidaza treatment. They've been B's main blood issue since the Velcade Cladribine Rituximad chemotherapy last year, the reason he's become so transfusion dependent these last 5 months.
His hemoglobin would occasionally drop during this time, but it really took a nosedive after the Vidaza treatment.
Glad to see that his hemoglobin held steady today.
Our one little neutrophil is still there, which is a good thing. Wish a few neutrophil buddies would have joined him, but I think if he had disappeared, it would have been a blow emotionally. We've become really attached to that little guy.
B had a good day yesterday, restful, with NO nosebleed. Good.
Tomorrow, I fully expect to see more neutrophils.
I'm applying the power of positive thinking here.
That, along with the power of all of you praying for B, WILL raise that number.
Tomorrow, THERE WILL BE MORE NEUTROPHILS!
We've got to BELIEVE.
FEBRUARY 10-Friday-
Today's numbers:
Hemoglobin-8.7
Platelets-66
Neutrophils-0.1
WBC-0.8
WBC-0.8
Yesterday was a really tough day for B.
He had a bloody nose ALL day. Not a gusher, but a constant drip.
When your blood counts are compromised, a bloody nose is a bad thing.
It took TWO separate platelets transfusions, one in mid morning and one at 10 pm last night (which is why his platelet count is 66 today) to help stop the bleeding.
He also had a Vit K shot as well as a special nose spray to help with coagulation. Finally, at midnight, the bloody nose subsided.
Fortunately it seems the all day bleeding didn't affect his hemoglobin count too much, so it looks like today he will be able to rest transfusion free.
Now, some good news...(insert fanfare here), he has a neutrophil today!!
I'm sure hoping it's not a lab anomaly and that tomorrow's labs will show a few more neutrophil buddies to keep this first one company.
Maybe, there's a bit of light shining at the end of this hospital tunnel.
Today is our 10th day here.
B says he misses my home cooking, his dog, his bed and his TV.
I'm not sure if it's in that order, but I agree with him, there's no place like home.
Maybe we'll get there in a few days.
FEBRUARY 9-Thursday-
Today's numbers:
Hemoglobin-8.9 (after 2 units of blood yesterday)
Platelets-19 (down 10 from yesterday, probably get a transfusion tomorrow)
Neutrophils 0.0
WBC-1.6
WBC-1.6
We feel like we are living the movie 'Groundhog Day'.
Every morning seems to start the same way.
Maybe tomorrow, the day will be different.
FEBRUARY 8-Wednesday-
Today's (disappointing) numbers-
Hemoglobin-6.7 !!! (transfusion underway)
Platelets- 29 (and that's with the help of yesterday morning's transfusion!)
Neutrophils-0.0
WBC-0.7
Hemoglobin-6.7 !!! (transfusion underway)
Platelets- 29 (and that's with the help of yesterday morning's transfusion!)
Neutrophils-0.0
WBC-0.7
Yesterday (2/7) morning's labs were also disappointing.
Hemoglobin-8.1 (Normal is 13.1-17.2)
Platelets-14 (Normal is 150,000-400,000)
Neutrophils-0.0 (Normal is 1.8-7.8)
WBC-1.3 (Normal is 4.8-10.8)
WBC-1.3 (Normal is 4.8-10.8)
His almost normal Hemoglobin count of 11.0 on Monday was attributed to dehydration.
We learned that if you are dehydrated, you have less blood volume, so the count will be elevated because the concentration will be higher.
Think of a whole cup of water and a half cup of water. With a whole packet of cool-aid in each one.
The cool-aid concentration will be higher in the half cup because the volume of liquid is less.
That's how it is with red blood cells in someone who's dehydrated and who's (liquid) blood is at a lower volume. The hemoglobin count will be higher, but the hemoglobin is still really deficient overall.
Bummer. We were hoping Monday's Hemoglobin count of 11.0 was a good sign, but it was, instead, a false positive.
The Doc has set thresholds for transfusion.
Hemoglobin below 8.0= 2 units of packed red blood cells.
Platelets below 15= a unit of platelets.
This morning's labs were also really disappointing.
Hemoglobin-6.7 !!! (transfusion underway)
Platelets- 29 (and that's with the help of yesterday morning's transfusion!)
Neutrophils-0.0
His hemoglobin is in a very scary low range.
We also learned yesterday that he's at a higher risk of a heart attack when his hemoglobin levels are so low.
He's getting two units of packed red blood as I write this.
Yesterday's platelet transfusion didn't give him as much of a bump as we'd hoped and he'll probably need more of those in a day or two.
Finally, he still has NO Neutrophils.
He continues to run low grade fevers off and on and is still receiving antibiotics via IV. He's also getting daily Neupogen shots to build his white blood counts, but so far they haven't gotten them kickstarted.
So, no good news today.
Maybe tomorrow's the day.
I've decided to post his early morning labs each day, so stop in now and then to see where he's at.
You can be sure that when I can finally post something other that a 0.0 for his neutrophils, it will be be accompanied by a loud cheer.
FEBRUARY 6-Monday-
We were told when we first came into the hospital last Tuesday, that B would probably go home by Monday. Today.
Well, that's not going to happen.
Tomorrow begins our second week here.
His neutrophils still remain at zero. That means he basically doesn't have any immune system at the present time. He's a bubble boy.
The Doc is not comfortable with B being anywhere other than under the watchful eyes that the hospital can provide while he's so neutropenic.
He's still getting antibiotics via IV and daily lab tests to keep track of his blood counts.
His official diagnosis is Pancytopenia. This means that all three blood components, that are manufactured by his bone marrow, are critically low.
On the plus side, today, his hemoglobin actually went up a bit on it's own, without a transfusion, so maybe he won't need any packed red blood transfusions for a while. Yesterday's count was 8.2, and today's count 11.0 (normal range is 13-17).
I'm taking this as a good sign that at least one of the three blood components that have been critically low for him may finally be on it's way up.
But his platelets and white counts continue to be an issue.
But his platelets and white counts continue to be an issue.
He got a unit of platelets 4 days ago and while they don't seem to be dropping as quickly as they did last week, they are still dropping. He'll probably need a unit of platelets tomorrow. He's at 23 today, down from yesterday's 34.
That brings us to the third blood component, the white cells, specifically, the neutrophils. They haven't come up a bit. Still at a dangerous zero.
Today the Doc told us a story of another patient she has, that, like B, had post chemo Pancytopenia. Just like B, he was receiving transfusion supportive care on a regular basis. She decided to treat this guy with Vidaza.
Initially, just like B, his counts also plummeted. His counts stayed critically low for about four weeks after his Vidaza treatment, but then, when his counts started coming back up, they not only went up, they went back into a pre-chemo normal zone, where they've now remained for the last 3 years for this guy. With just a singleVidaza treatment! Transfusion free! Normal!
This is Doc Chen's hope for B.
That B's singleVidazatreatment will take all of his counts back into the normal zone, and keep them there.
This is Doc Chen's hope for B.
That B's singleVidazatreatment will take all of his counts back into the normal zone, and keep them there.
We don't know if it will take another week or two or three for B to recover from the Vidaza treatment.
And we don't know if B will get a similar result as Doc Chen's other patient, but boy, if we do get that kind of result, we will be ecstatic.
Ah, I think ecstatic would be an understatement.
In the meantime, we wait.
Each morning, we eagerly await the lab report.
Today's rise in the hemoglobin was good news.
Maybe tomorrow, his platelets will have held steady.
Maybe tomorrow, his neutrophils will not be zero.
Maybe.
So when you're saying those prayers for B, when you're asking the universe to shine it's light on him, showering him with health, goodness and love, could you ask for a couple of things specifically.
One, in the short term, we sure need those neutrophils in a big way.
Secondly, let's please ask that B gets a miracle similar to Doc Chen's other patient, and that sometime in the near future, B will get a miracle of his own, the one he's been so patiently waiting for.
Thanks for your help. I'll keep you posted.
~update~ Tuesday Feb 7, 7:30 am-
Today's early morning labs were disappointing, but we will remain hopeful that tomorrow's labs will show that the healing has begun. Our chin's are up.
~update~ Tuesday Feb 7, 7:30 am-
Today's early morning labs were disappointing, but we will remain hopeful that tomorrow's labs will show that the healing has begun. Our chin's are up.
Hemoglobin-8.1
Platelets-14 (transfusion under way)
Neutrophils-0
Platelets-14 (transfusion under way)
Neutrophils-0
FEBRUARY 2-Thursday-
I ended my last update with "Maybe next week B will get some good news."
Well, in a weird way, he did get good news. But, some bad news was attached as well.
Seems the bone marrow biopsy results showed several things, all of them good news.
No Myelodysplastic Syndrome, no leukemia, no blast cells, no lymphoma in the marrow and, best of all, for the first time, B's bone marrow actually showed some improvement! in the stem cell damage.
Now the bad news.
Before those results were known, B had agreed to starting the Vidaza treatments, that targeted Myelodysplastic Syndrome.
We did this based on the assumption that the bone marrow biopsy would probably show he had Myelodysplastic Syndrome and that the earlier you start treatment, the better your chances Vidaza will work.
Unfortunately, as mentioned in my last post, Vidaza can initially also cause further suppression of the bone marrow, and that's exactly what happened for B.
So all of his blood counts got much worse.
It seems that if we had waited to get these bone marrow biopsy results, and seen the improvement, the Doc would have held off starting the Vidaza.
That would have kept B on the supportive care transfusion train he's been on for months, but it would have also kept him from being where he is right now.
He is currently in the hospital with critically low blood counts all around.
His platelets and white counts (neutrophils) have been as low as zero, and his hemoglobin (red) counts have been crazy low too.
He's in the hospital as a precautionary measure to be able to immediately address any issues that may come up with these critically low counts.
He's getting almost daily blood transfusions.
He's also on IV antibiotics to help him prevent infection from germs and bacteria that can be found both outside, and inside his body, as well as what might be in the blood products he's receiving almost daily.
We are being told that this Vidaza caused bone marrow suppression should only last a few weeks. Only.
Once again, thanks to our many friends and family for holding down the home front for us, staying with and taking care of our precious Annie Bo, watering the flowers and such. It makes being here a lot less stressful when we're not worrying about home.
So, the new plan is NO MORE Vidaza.
We will instead continue riding the supportive care transfusion train, with bone marrow biopsies every 6-8 weeks, looking for those bone marrow improvements, knowing that now, THEY CAN HAPPEN!
In theory, once this latest Vidaza setback is behind us, his counts should continue improving on their own. (I should have paid attention to my spidey senses telling me that Vidaza wasn't going to be without a 'down side').
We don't know how fast or slow his bone marrow improvement process will be, or how long it will be before his blood counts actually reflect any bone marrow improvement, but we finally got that glimmer of hope we've been praying for. Yes!
Also, this week, there was another snippet of good news.
B's sinus tachycardia has mysteriously abated. His heart rate for the last 4 days has been in the mid 90's, down almost 20 beats from 110-120 range he's had the last 4 months.
I'm hoping this means that the autonomic neuropathy that's been dogging him is perhaps starting to abate.
And, if that's the case, perhaps relief from his painful peripheral neuropathywon't be far behind.
Our short term goal is to make it safely through these critically low blood counts these next few weeks.
The Doc thinks B will only need to be in the hospital 'til maybe Monday.
B's excited 'cause we get to watch the Superbowl on our super 12" hospital TV with yummy hospital munchies. We also get to spend my birthday here on Saturday. Party on Garth!
Once again, Northwest Medical Center is taking excellent care of him and we're settled in for the weekend.
B's a bit disappointed we'll be spending my birthday here, but I'm good with it.
All I want for my birthday is for B to be better.
And the peace of mind knowing he's within a minute of anything he might need isthe perfect gift.
JANUARY 27-Friday-
This has been a really difficult week.
Heck, they've all been difficult, but for some reason, this one has been even more so.
As predicted could be the case initially, Vidaza has put all his blood counts in the critical zone. He's needed a platelet transfusion, as well as 2 units of packed red blood, and 2 Nuepogen shots.
His low hemoglobin (which carries oxygen to all part of our body) has left him feeling so tired and weak, he's spent a good deal of this last week in bed.
B's normally tenacious spirit has disappeared. He's sad and he's tired.
Tired of feeling sick all the time.
Tired of not getting even one good lab report.
Tired of 2-3 transfusions a week.
Tired of the excruciating pain in his fingers and feet.
He completed the last 3 days of his 7 day Vidaza treatments on Wednesday.
So far, while he's tolerating Vidaza, as I mentioned might happen, it's caused his blood counts to plummet.
And we are also now learning that it can take several cycles (months) to see if Vidaza will work or not.
Of course, B was optimistically looking for better counts right away, so these lower than his usual low counts have taken their toll on him emotionally, as well as physically.
He had platelets and a unit of packed red blood cells on Wednesday, and another unit of red blood on Thursday.
And to further add to his misery, Wednesday he also started running a fever as soon as we got home from the transfusions.
It got to 102.2° real quick and B's chills shook his whole body. I immediately called Doc Chen who told me if I could get the fever below 101° and keep it below that, we wouldn't have to go to the ER.
That was accomplished with Tylenol and cool wash-clothes so we made it through the night ok.
He was still 99°+ Thursday morning and since we were already scheduled for another unit of red blood that morning, we added a stop at the Doc's so she could do blood cultures to make sure he's not getting a blood infection.
He continues to run a low grade fever today.
He's on antibiotics again, just in case.
His platelet counts were once again critically low (19) today, but for reasons unknown to me, the Doc has decided to wait 'til next week to transfuse. So, we have to be extra careful he doesn't do anything that could cause him to bleed this weekend. No bumps or cuts allowed.
We also still don't know the results of B's last bone marrow biopsy. Should hear next week.
I must admit that seeing B suffer so much has taken it's toll on me too.
I feel absolutely helpless.
I can't imagine what it would be like to feel the pain and sickness he has and have it go on for months and months and months. With no respite. Hour after hour. Day after day. Week after week. Month after month. Literally.
I mean, even his so called 'good' days would put most of us in bed. It's crazy.
I am worried. There's only so much a body and person can take.
I can only hope that the saying “it's darkest just before the dawn” holds true for B.
Maybe we're almost there.
Maybe next week B will get some good news.
As I've said in the past. We NEED a few miracles and we need them soon.
JANUARY 20-Friday-
So far, B is tolerating the new drug, Vidaza, that may help boost his bone marrow and stabilize his blood counts. He's completed 4 of the 7 treatments.
As far as side effects, he's mostly just been a bit nauseas, but not too much.
And, there have been no tachycardia or syncope issues, thank goodness.
But, we still don't know if Vidaza will work for B.
We are told there's a 50/50 chance, and as B says “I guess that's better than a 20/80 chance.”
The tale of it's effectiveness will be told when his blood counts start to rise, although we were told his counts may fall even lower initially with start of the Vidaza treatment. But then they should start to rise. He gets lab work done every other day. I told B today not to attach too much importance to these initial results knowing they could fall at first. Good thing, 'cause so far, they are still falling. He had to have another platelet transfusion today and was close to needing red blood as well. Sure hope next week he gets some good labs.
Preliminary results of the BMB done last Friday still don't show mds, but Dr.Chen is still convinced B should be treated as if he has it.
She said a few scary things about being transfusion dependant, as B has been these last 4 months.
There's a real chance of contracting a fatal blood infection when you are getting so many transfusions all the time.
The sooner that B gets off this transfusion train, the better. The risk is higher than we think for something going really wrong.
I also learned a few more things about this drug, Vidaza, since last week.
One, if it works for B, he will probably have to have the treatments for the rest of his life.
That means 7 days a month, he would have to have Vidaza infusions.
B's ok with that.
He's ready to be done with transfusions and hopes Vidaza will work for him.
And, on the brighter side, we also learned that the drug company is very close to a pill form that would make the maintenance thing a whole lot easier.
So, while not a cure, if Vidaza works for B, his bone marrow disorder could be managed.
B continues to be weak and fatigued. He lost a whole lot of muscle mass from the chemo.
I've started him on protein smoothies and a daily walk.
Baby steps 'til he gets stronger again.
Unfortunately, B's neuropothy is still really bad. No progress there yet.
We are going to look into acupuncture as a way to manage the neuropathy.
Hopefully soon ,that painful, debilitating beast will be done with tormenting B.
And I hope that soon I can start to relay good news about his blood counts.
Keep your fingers crossed.
JANUARY 15-Sunday-
B is no better.
I don't think he's worse, but the status quo is wearing on him.
He fluctuates between feeling bad and really bad.
He also seems sadder a lot of the time now too.
He's tired of being hit too hard from all sides.
He's not getting even small victories to help give him hope.
He can't find solace in his guitar because the nueropathy has taken that away from him.
He can't find solace in visiting with friends because his suppressed immune system has made him a bubble boy who needs to keep contact with others to a minimum.
All his blood counts continue to be dismal, and he's getting several transfusion a week.
He got two units of red blood on Monday, an IVig infusion on Thursday, and one unit of platelets on Friday. He also got 3 Nuepogen injections last week to help build his white counts.
Friday, Doc Chen told him he needs meticulous care while he's fighting this bone marrow disorder.
She also did the bone marrow biopsy a few weeks earlier than planned to see if Mylodysplastic Syndrome may have taken hold. We should get those results by next Friday.
But even without knowing for sure if he has Mylodysplastic Syndrome, Doc Chen has decided to start a treatment next week of a chemo-like drug, Vidaza, that is used to fight Mylodysplastic Syndrome.
She says his marrow is behaving as if it has Mylodysplastic Syndrome and Vidaza is a drug that can cure Mylodysplastic Syndrome in some patients. She says the earlier you treat, the better chance it will work.
Vidaza has a 50/50 chance of reversing B's bone marrow disorder.
She also said there's really no down side to this drug, that it won't cause a host of new problems on it's own.
My spidey senses spiked when I heard that. No downside with a powerful drug like this? Really?
After coming home from the Doc's, I did some research of my own on Vidaza and from what I read, it's not necessarily a 'no downside' drug.
It does have a few side effects that could be problematic for B.
Like tachycardia and syncope.
And then there's the possibilities of kidney and liver damage and even lower blood counts.
Really?
I'm nervous about it, and I wasn't sure I wanted to mention these things to B because of his state of mind.
He needs hope. Not more fear.
But, he also wants the truth and to not be caught off guard by an unmentioned side effect. If we need to be careful extra careful again because he might faint (syncope), he wants to know that.
Now that I've done this bit of research on my own, I plan to call the Doc directly and ask about the side effects that may be especially problematic for B with all the current issues he also has.
His resting heart rate has been about 110 for the last 6 months because of the autonomic nueropathy. How will this drug affect the tachycardia he already has.
Trusting that Doc Chen is making the right decision here is really hard.
I may even put in a call to the AZ Cancer Center to see what Doc Miller thinks, even though I know he is not B's oncologist anymore and may not give his opinion.
Despite the potential for side effects, B wants the treatments.
So, I guess that's what we'll do.
If you'd like to send an extra dose of positive thoughts and prayers his way that this drug does the trick and doesn't cause any adverse reactions, we'd sure appreciate it.
I'll keep you posted.
JANUARY 7-Saturday-
Hi everyone and … Happy New Year. Here's hoping this year will be just that.
Happy and Healthy for all of us.
B is still riding the transfusion train.
He never complains, but I can see this seemingly never ending trip is wearing on him.
Disappointment is written on his face each time a lab report shows his marrow still isn't working. But he quickly recovers, puts his brave face back on and says "there's nothing to do but to do it" as he heads for another transfusion.
I can now almost predict when his hemoglobin is low because of how pale he looks.
Our red blood (hemoglobin) carries the oxygen to all parts of our body and when it's low, B gets pale and really tired.
He doesn't really feel when his platelets and white counts are low, but we know how important those counts are in keeping him safe from bleeding and infections.
Last week's labs showed he needed all three blood components. Platelets, red blood and a Nuepogen shot to boost the white count. He got the platelets yesterday and will get the red blood on Monday.
If this continues for the next month or so, he will have another bone marrow biopsy to check the status of the marrow.
I've decided to start charting his blood counts so we will hopefully be able to spot the healing trend when it starts. (Not sure if I'll post that chart here or not.)
Come on stem cells, get going again!! Let's see some progress soon. Please.
B now walks mostly without the cane, although he describes himself as looking a bit like Joe Cocker with the way his arms swing to help his balance. He cracks me up.
Oh, and..... he's now even driving a bit!!
He hadn't driven in almost 6 months and I freaked out just a little when he casually asked for the car keys to run up to Target to get an Xbox headset. Actually, I felt positively wiggy and told him I wasn't sure if he was ready yet for that step forward.
But we all know B and how persuasive he can be, so after a few “Ah, What the heck's!!?", ..."I don't think so's!” ... and...."Forget about it's!", I soon relented and handed the keys over.
I know he needs to find snippets of normalcy as much as possible during this time, but handing them over felt a lot like the first time you give the keys to the car to your newly licensed teenager. A bit scary.
He's doing fine, even driving completely across town yesterday, singing with the radio, me doing my best to not be a side seat driver, letting him have fun. (Those who know me know that wasn't easy.)
He even got a nifty temporary handicap placard which lets him park up close and that's going to really help.
So, things are status quo for now.
While status quo isn't great, it's better than where he was a month ago (still in hospital).
And I hope a month from now, we will be able to say his damaged bone marrow is finally starting to work.
Wouldn't that be great?
DECEMBER 31-Saturday-
Wow. My last post was 12 days ago? Time has definitely gotten away from me. I thought I'd like to quickly get one more update in before the end of the year.
I'm happy to report that B continues to improve ever so slightly, day by day.
Last night, he was feeling so much better, he even wanted to stop by Still Cruisin's last Happy Hour gig of the year.
I was a bit nervous when all of a sudden he headed onstage and started singing with the boys. He tires quickly, and needs to sit down in a hurry when that happens. But he did fine! Seeing him singing and having so much fun was priceless. Surprisingly, I was able to relax and just enjoy each and every moment. It was great!
I think him using his cane as an air guitar was a cute touch. Singing without a guitar has always been unnatural to him, so I think that silly cane helped.
We're glad we got the chance to stop by and party with the gang. Besides being able to give Mareena and Steve their birthday spankings, we got to see so many friends we've missed these last 6 months.
He got good news from the nuerosurgeon on the 19th about his back.
It's almost healed completely!
He was able to start using the back brace less and less and is now brace free!
And he hasn't needed the walker at all the last 10 days, and is instead just using that cane now.
His other two big issues (blood levels and nueropathy) are still in full force, but his feeling better overall, is helping him cope. He's also gained back all 9 lbs he lost in the hospital. (Christmas chocolate, in many shapes and forms, is helping here.)
We did finally get the results of his bone marrow biopsy, and as of yet, it doesn't show the chromosome changes that would indicate Mylodysplastic Syndrome. Wow. That's good news so far.
What this means is that we will continue the weekly monitoring of his blood counts, transfuse when necessary, and pray that one of these weeks, the labs will start to show his marrow is back in business.
That is what Doc Chen says could happen. She still thinks his bone marrow could start to work again on it's own.
So, we are cautiously optimistic, although the lab results aren't cooperating just yet.
If the labs continue to show his marrow isn't working, then in about 6-8 weeks B will have another bone marrow biopsy to once again check to see if Mylodysplastic Syndrome is trying to rear it's ugly head.
Doc Chen also continues to be aggressive with getting B's whole body balance back in order.
She keeping his iGg(immunoglobulin), B-12, testosterone, Vit-D, and other levels in the normal zone to aid in his overall well being. He was very deficient on Vit D so he's currently on a loading dose. He takes 50,000 IU once a week for 4 weeks, then drops down to 2,000 IU once a day from then on.
His iGg(immunoglobulin) level has remained above 700, so he's not needed a transfusion of that yet since we left the hospital.
His nueropathy continues to be a big issue. No relief at all from the pain.
I know he's disappointed that his marrow and nerves aren't cooperating, but he's putting on his brave face and doing what needs to be done with that same grace and dignity he has had all along.
What I have witnessed this man go through these last 6 months and the courage he has shown throughout simply humbles me. He is amazing.
Here's hoping 2012 gives him the miracles he's been waiting for.
And here's hoping 2012 is good for all of you too.
DECEMBER 19-Monday-
I'll be brief for a change.
This last week was really good!
B, for the most part (dang nueropathy!), was feeling good almost every single day!
He did have 2 transfusions (platelets and red blood), plus a few Nuepogen shots to build his immune system, but we expect this will be somewhat the norm until his bone marrow stem cells recover.
Still no definitive results on the chromosome studies of the bone marrow biopsy to see if he has Mylodysplastic Syndrome. Probably hear this week. If he has it, that will add another difficult detour on B's journey back to good health, but we will try to keep our spirits positive, no matter what.
We are settling into the new routines that changing Docs and locations has presented.
We will also see the neurosurgeon this week to check the progress of B's broken back recovery.
And I suspect there will also be a few transfusions this week as well, but B is just feeling so much better, it's making everything easier.
He's walking without his walker at times, sleeping well and even has a bit of an appetite. He's regained 3 of the 9 lbs he lost while in the hospital.
Christmas this year is, of course, different, with zero time to shop or decorate, but we are strangely feeling the spirit more deeply than we have in many years past.
Priorities are crystal clear and we are celebrating each and every good day and moment we have.
We are blessed.
DECEMBER 12-Monday-
Today we had our first office visit with Dr. Chen.
I have mixed feelings about the visit.
Her Arizona Oncology facility didn't even begin to compare with the AZ Cancer Center facility, but I am trying to stay focused on the reasons B is choosing to see her.
Today we had our first office visit with Dr. Chen.
I have mixed feelings about the visit.
Her Arizona Oncology facility didn't even begin to compare with the AZ Cancer Center facility, but I am trying to stay focused on the reasons B is choosing to see her.
She has a great reputation and her care of Brian while he was in the hospital was really good.
She jumped right in trying to get to the bottom of B's platelet issues, she is directly tied to Northwest Hospital (which will be an asset should he need to be admitted again), and he likes her.
But the AZ Cancer Center is leaps and bounds more modern, organized and aesthetically pleasing than the Arizona Oncology office.
But the AZ Cancer Center is leaps and bounds more modern, organized and aesthetically pleasing than the Arizona Oncology office.
I keep having this feeling that we, in the long run, may not have jumped ship completely from the folks at the AZ Cancer Center.
Granted, the AZ Cancer Center's Docs are tied to UMC, and we won't be using that hospital again in an emergency.
And in hindsight, they may have dropped the ball diagnosing the infection that put B in the hospital, but he really wasn't showing symptoms two days earlier other than a fever.
Still, we can't have two separate oncology clinics treating B at the same time.
The bottom line for B right now is, he must make a choice between the AZ Cancer Center and Arizona Oncology.
He must put his faith in one set of Docs at a time and if, at some point, their course of treatment doesn't feel right, he can always change again.
And, right now, B chooses Dr. Chen and Arizona Oncology.
So, I had a difficult conversation with Nikki at the AZ Cancer Center this morning to let them know the current status and how we have gotten here.
I asked if they would like copies of all the tests and such that have been and will be done at Northwest Hospital. I would like to keep them up to date on B's condition should B decide/need to return to their facility at a later date. They were fine with this, agreeing to keep his file up to date, but they will not have anything to do with current treatment decisions.
I also thought that from the VCR clinical trial point of view, AZ Cancer Center would like to know about B's post chemo complications.
If this VCR combo proves too toxic for too many, they may even end the trial early, although I have no idea about any of the conditions of any other participants.
I was told today that they have a dedicated group of data technicians that do just that, follow every clinical trial participant, now and for the rest of their lives, to document the trial and it's eventual outcomes.
I asked Nikki to please thank Sandy Kurtin and Doc Miller for all their wonderful care and let them know how much we will miss them. It was very sad to sever this tie after over 11 years with this fine group of people and I cried saying goodbye.
We will miss the entire staff there. A lot.
We will miss the entire staff there. A lot.
So, it looks like we are going with Doc Chen and the Arizona Oncology team for the time being.
That being said, the lab results from today's visit show his platelets are low again. No surprise there. They are down to 21000 from Friday's (hospital transfused) post platelet 56,000 count.
No platelet transfusion today though. A few days of wait and see to see if they level off or keep dropping.
A month or so ago, he was holding steady at around 20,000 until the infection got him. I found out that infections can also cause platelet depletion so that could be a factor in why he dropped into the teens while he was so sick. Plus we know his bone marrow stem cells are damaged.
I have also discovered something neat about this journal.
I have also discovered something neat about this journal.
It has become a record of sorts with regard to treatments, tests, drugs, etc. More than once, it has come in handy when trying to recollect what's been done and when.
So with that in mind, I will probably add a few more medicine details here and there, to keep an even more accurate record. This will help with monitoring side effects and such. Could be a bit boring for you all to read at times, but it will be helpful for us in keeping track.
I mentioned last Tuesday that Doc Chen had started B on Cymbalta.
It is sometimes used to fight nueropathy, as well as help with appetite and depression.
B was surprised she thought he needed the depression part. He doesn't think he's depressed, just living a reality that sort of bites at the moment.
Anyway, at about the same time he started Cymbalta, I noticed his eyes became continually dilated (staying that way even after we came home).
I brought this to Doc Chen's attention while we were in the hospital, but she didn't know what might be causing it.
I brought this to Doc Chen's attention while we were in the hospital, but she didn't know what might be causing it.
It was disconcerting to me so, yep, I googled the side effects of Cymbalta, which was the newest drug added to his daily regimen and sure enough, dilated pupils was on the list.
Also on the list was low blood pressure and fainting upon standing. Really? Isn't low blood pressure and falling an issue for B? Heck, low blood pressure was what kept us in the hospital a few days extra. Could this new drug have caused that?
So, I had already planned on mentioning all this to Doc Chen this morning.
Also on the list was low blood pressure and fainting upon standing. Really? Isn't low blood pressure and falling an issue for B? Heck, low blood pressure was what kept us in the hospital a few days extra. Could this new drug have caused that?
So, I had already planned on mentioning all this to Doc Chen this morning.
Then, in the meantime, B had a fainting spell in the middle of the night Saturday. Luckily, I was right there spotting him as usual, but this was different from all the previous weakness issues he's had before.
He passed out cold, with little warning. I was able to hold onto him and get him to the floor without hurting him, but it was very surreal.
He passed out cold, with little warning. I was able to hold onto him and get him to the floor without hurting him, but it was very surreal.
I was talking to him the whole time I was getting him to the floor. One of his legs was bent in the wrong direction, so I was telling him I was going to try to straighten out that leg, lay him down and go call 911.
I was behind him, with him sort of sitting (passed out) and leaning against me, while I was trying to reach the bent leg and straighten it. My plan was to then lay him down completely , then get to the phone. But he woke up while I was straightening his leg. I think the cold tile floor had something to do with it.
He was surprised to find us there on the floor, but he recovered somewhat quickly, and was able to get up (with just a little help).
So, this brings me back to Cymbalta. We convinced Doc Chen this morning we weren't comfortable with this drug and told her why. We prefer Gabapentin.
So she said to stop taking it. Good. Done.
My apologies for going on and on here.
Hopefully I won't be so long winded with most updates, but there's a lot going on right now.
One more thing. Still no word on the bone marrow biopsy's more detailed results.
Probably hear something later in the week.
Keep praying for a miracle. B needs a miracle.
DECEMBER 9-Friday-
Two weeks ago today, I went to the Northwest Hospital's ER with a very, very sick Brian.
Today, I brought home a much, much better Brian.
While not out of the woods with regards to his bone marrow disorder (Doc says some bone marrow biopsy markers are leaning towards Mylodysplastic Syndrome), he seems to have beaten the infection that could have killed him.
He's lost 9 lbs and is still quite weak, but is very happy to be home.
And I am very happy to be able to bring him home and I must say, our Annie Bo is very happy to have him home too.
DECEMBER 6-Tuesday-
Hmmm. Preliminary results of the bone marrow biopsy are in.
And it’s mixed news.
The good news is there is no sign of leukemia or lymphoma.
The bad news is his bone marrow’s stem cells are damaged and unable to keep his blood levels stable. This includes platelets, white and red blood cells.
So Doc Chen says for the time being, she’s going to have to keep B on the platelet transfusion train. His platelets are currently 17000, so he’ll get that transfusion later today.
Today’s report is just preliminary and we’ll get even more details of the marrow biopsy as they continue pathology over the next few days.
Doc Chen is hopeful that within time, his marrow’s stem cells will recover on their own. She says he’s still within a post chemo window where this can occur.
And I guess, further pathology of the marrow biopsy could also reveal a condition called Mylodysplastic Syndrome. While it can be treated, when it is chemo induced, the treatment may be less effective. So, we don't want to see a diagnosis of Mylodysplastic Syndrome.
We want the stem cells to just be a bit chemo weakened, temporarily, and we need them to start to heal themselves over these next few months.
So B’s journey has taken a new turn.
He’s done fighting the lymphoma, but now is fighting this (chemo caused) bone marrow stem cell disorder.
Doc Chen is also changing the med B takes to fight his nueropathy. She started him on Cymbalta instead of Gabapentin. Not sure why, but it may have to do with B's mood.
All these latest setbacks have made B more emotional than I’ve ever seen him.
He’s trying to present a brave face, but I know he’s scared. And sad.
On top of all this, the infection that almost killed him is still hanging on a bit, and he is still in the hospital. Day 13.
He’d like to go home and hug his puppy.
Now, more than ever, he’ll be needing more of your prayers and positive vibes.
I’ll probably update again tomorrow.
DECEMBER 5-Monday-
Whew. B’s journey has been a roller coaster these last few weeks. Heck, it’s been a roller coaster these last few months.
My previous update mentioned we came to Northwest Hospital (instead of UMC) with B’s latest emergency.
That move brought a whole bunch of new Docs into the picture along with a whole new set of ideas and opinions, many of which were completely new to us.
We have met (and adore) a new Oncology doctor, Doctor Laurie Chen. She is simply wonderful. B is seriously considering letting her become his primary oncologist from now on. Her treat the whole body approach is exactly what B is needing right now as he tries to recover from the chemo.
Labs she ordered showed low IGg levels (which affect how you fight infection), low B-12, and even low testosterone along with all the other standard low counts he regularly has (platelets, hemoglobin and white blood cells).
All of these things can be attributed to the fierce VCR chemo he had a few months ago.
So far, Dr. Chen has given him 2 IVIG infusions (iGg-immunoglobulin to boost his immune system), a testosterone shot (which she thinks he should have monthly to rebuild strength), and, also, 3
Nuepogen shots (also immune system builders which she wants him to have daily for a while). I will probably give him these shots at home again like I did 11 years ago. He’s also received 2 units of red blood and of course, platelets (his count was 15000).
Her approach to platelet transfusions is somewhat different from what we have experienced with the AZ Cancer Center. She does not want to transfuse platelets unless he drops to around 15000.
She sites two reasons.
One, you can become immune to platelet transfusions over time if done too much. If that happens and you have an emergency where you need platelets to work, you may be compromised if you’ve had too many platelet transfusions.
Two, platelets are not refrigerated and the more transfusions you have, the more chance you have of getting a bacterial blood infection from the platelets themselves.
So, I think she’s going to let him hover around the 20000 mark without a platelet transfusion, and only give them to him if his counts fall into the teens.
We’ll see how that goes.
Today, B had a bone marrow biopsy. Hopefully this will show something (treatable!) to explain the platelet disorder. We should hear results within a day or two.
B’s been in the hospital now for 11 days so far. We thought today he would go home, but his blood pressure is misbehaving. Too low.
It’s been low since September and orthostatic hypotension (low blood pressure) was thought to be the cause of the fall that broke his back.
We heard today that the low blood pressure could be caused by autonomic nueropathy, a different type of nueropathy caused by the Velcade. Darn Velcade poison!
The nueropathy will take time to go away. In the meantime, he needs to stay super hydrated and eat and drink salty stuff to help raise his blood pressure. V-8’s and canned soup may now become somewhat daily staples. (These are high in sodium)
So, that’s where we are today.
Here’s hoping we get to go home tomorrow.
I’ve heard from a few folks that it’s beginning to look a lot like Christmas out there.
DECEMBER 2-Friday-
It’s been almost 2 weeks since I’ve had a chance to update this blog.
And there’s a ton to report so bear with me on what will probably be a lengthy update.
I know I mentioned in my last post that I was going to slow down my posts ‘til I had good news to report, but that’s not the reason this blog’s been silent.
As a matter of fact, I heard, from so many of you, that you wanted to hear it all, the heavy and the light, and wanted me to continue updating the same as I have been all this time.
So that’s what I was going to do.
Then, he got soooo sick, I simply didn’t have time to do any updates at all.
For those of you who aren’t on Facebook and get these journey updates through email notices, I apologize for not being able to let you know the latest. I haven’t been able to access my email at all these last two weeks (and still can’t). Hopefully, you’ve wandered back here on your own and are now catching up.
For those of you who have an idea of what’s been going on (through Facebook), I’ll get into a bit more detail now about these last few weeks.
We did go for our scheduled platelet transfusion on Wednesday, Nov. 23rd. It turned out he also needed more red blood, so he got two units of that as well.
Tuesday night/early Wednesday morning he was simply sick as ever. Fevers, transfusions, headache, nausea, weakness, chills... as so on.
The fevers were right on the edge of what's considered too high for him. It took an all night efforts of Tylenol and cool washclothes to stay out of the ER.
By Wednesday morning, his temp was once again normal, although he did run one once mid-afternoon during the transfusions. Then, by the time we went home at 6:30 Wednesday evening, his temp was normal again.
Unfortunately around 8:30 Wednesday evening, his temp started climbing again. It was another long difficult night of fighting fevers, but we were able to keep them below the danger zone.
Because the next day was Thanksgiving and we knew all the hospitals were on those skeleton crews we’d been warned about, B did not want to go to the ER. He was afraid we’d have repeats of our last two experiences with UMC’s ER (19 and 26 hour waits) and simply did not want to endure that again.
I, along with his family, were torn between taking him in or abiding by his wishes, and we opted for the later.
He wanted to have Thanksgiving at home, with his family around him.
He was on meds again and we thought he would start feeling better once they took hold.
Boy, were we wrong.
Throughout late Thursday night, and the wee hours of Friday morning, he really started to decline and started to show other symptoms of infection, so my plan was to call the Cancer Center first thing Friday morning and get him in there.
When morning came and I called, I got a recording that the Cancer Center was closed. I lost it. After crying for a few minutes, I gathered him up and off we went to the ER.
We decided to try a different hospital.
We went to Northwest Hospital instead of UMC. Mostly because B’s sister works for a hospice and spends quite a bit of time at Northwest. When I let her know I was taking B to the ER, she urged us to try Northwest this time.
That was exactly the right thing to do. His care began immediately and he was in a room within 4 hours.
He was in really bad shape. I’ve used the expression scary bad before, but this time it was SCARY BAD.
The Docs were saying things we’d not heard before, like if your heart stops or if you stop breathing, do you want to be resuscitated or ventilated or what.
They were telling us they weren’t sure they could get the infection under control and that there was a real possibility it could kill him.
Wow. Really? We were just plain scared!
B was delirious, and speaking nonsense. He was going in and out of dreams, and talking about understanding the universe. It was breaking our hearts.
And we were all kicking ourselves for not getting him in on Thanksgiving. For waiting. Talk about heavy, we had cinder blocks being stacked on us, and it was surreal.
Now for some lighter news.
He’s responding to the antibiotics, and has been improving steadily day by day.
His condition has gone from critical to stable.
We’ve been here at Northwest a week now and could be here another week. I’m good with that. I want to take home a healthy, thriving B with no possibilities of setbacks.
We have family staying at our home, so our sweet dog Annie is being care for and the plants are getting watered and stuff, so we aren’t worried about the homefront.
We’ve had a ‘village’ of friends and family taking care of anything that’s been needed and B and I are settled in nicely at Northwest. I haven’t been home since last Friday, but I’m okay.
B asked me to stay, to not leave, and that’s my plan. I’ll go home when he goes home.
We’ve also had a whole slew of new doctors looking at the overall picture of B’s medical problems and may have a few new ideas on the bone marrow/platelet thing that’s been going on these last few months.
We’ll see, and I’ll get into more detail on that later.
So, for now, he’s stable.
Yesterday, he felt and looked so much better than he had in a while.
Today, because of his blood counts and such being low again, he's not feeling as good.
Today he’s getting platelets, (pre-21,000, post-56,000) some more red blood, a Nuepogen shot, an IVIG infusion along with a few other things. Hopefully, all these things will have him feeling as good as he was yesterday, if not better.
A few days ago, our wonderful friends, Bill, John and Jeanne Ronstadt came to his room with their musical instruments and magical harmonies and gave B a two hour ‘musical bath’ that was amazing.
We are blessed.
The outpouring of love and affection for B, this gentle, wonderful human being, has been off the charts and he’s humbled and thankful for all of it. Thank you all.
He’s going to be okay.
We all just know it.
More later.
NOVEMBER 21-Monday-
Thursday morning's pain miracle lasted about 40 hours. Soon after updating this blog on Friday, he started feeling pain again.
The good thing is that it wasn't nearly as bad as it was before. Uncomfortable but not excruciating.
B says his bad days are getting better and his good days are pretty darn good.
Today, we went to the AZ Cancer Center for a platelet check.
Dang if those pesky platelets hadn't fallen again. The count was a very low 20,000.
The doc's decided to wait until Wednesday to transfuse B so he has high counts during the holiday weekend (when most medical facilities have skeleton crews). Just in case.
The next few days, we'll be especially in that 'don't bump a noggin' mode 'til he gets his transfusion.
So I guess, in some ways, he's going in the right direction, feeling better and all. But it will be great when his bone marrow joins the procession and starts making platelets on it's own.
I'm beginning to sound like a broken record. Platelets, transfusions, platelets, transfusions.
A friend called the other day saying she had finally gotten a chance to read this journal.
“Sorta depressing” is what she called it.
Made me wonder if I shouldn't just wait and update only when we have good things to report.
As I write it, I try to make the updates as light as possible, but, it quite simply hasn't been very light for B for a while.
Still, I get it. While it's hard to make heavy, light, it's also hard to read non-stop heavy.
So maybe, for a while, I'll focus mostly on updating only the good news, the big and little steps forward.
Of course, reporting mostly just good news could mean I won't be updating as much, but, I'm hoping that won't be the case.
Here's hoping there will be tons of good stuff happening and I'll be busier than ever with this journal.
We'll see.
NOVEMBER 18-Friday-
Yesterday morning, around 6am, B says he was awakened from sleep by the sensation that something had lifted him up by his arms, then released him.
He says it kinda hurt at first, but then as he lay there awake, it occurred to him that the excruciating pain he's had for almost 3 months in his legs and especially his feet, was gone. Gone.
Then he got scared that maybe he had become paralyzed somehow while sleeping. He started touching his feet and legs and was relieved he could still feel that touch.
Then he said he started giggling. It was as if a switch had turned off the pain. He simply couldn't believe it.
Well, it's been almost 36 hours, and he's still, for the most part, pain free.
I say, for the most part, because he's still on some mighty powerful pain meds. But those pain meds hadn't even touched the pain he'd been having in his legs and feet these last few months.
So, I don't know how he'd feel without the pain meds, but I do know that he is finally comfortable.
He's the most like his old self that I've seen in a very long time.
We needed this miracle.
It's been a tough few days and B feeling better has made carrying the weight of these last few days more bearable.
Our son and his wife's newest little baby was stillborn Wednesday morning, two of our best friends own battles with cancer are at crucial turning points and this afternoon, B's brother Jay, had cancer surgery. We are grieving for our kids and our little angel grandson. Our two dear friends and Jay's cancer outlooks are yet to be determined.
B and I were talking about how 'heavy' the last few days have been for our families and friends and how grateful we are that B got this little miracle yesterday.
We are giving thanks to the powers that be and praying that miracles will touch Chip, Lisa, Bill, Melanie and Jay as well.
NOVEMBER 14-Monday
We went back to the AZ Cancer Center today for another platelet check.
I didn't get to do the James Brown shuffle slide just yet.
B's count was 22,000. The platelets had dropped, but, on the bright side, only 1000 since Thursday.
So while they didn't climb, which was our hope, they still seem to be somewhat stable at least.
The Doc decided to go ahead and transfuse today, just to be safe, since 22,000 is really low and he doesn't want B to have any bleeding complications that may occur with counts that low.
B's post transfusion count was 60,000.
He will have them checked again within the week and hopefully he will maintain that number or maybe even add to it.
I still intend to celebrate climbing platelets with an 'I feel good' shuffle slide sure to make a few eyebrows rise.
Hopefully soon.
And hopefully, I won't embarrass B too much.
NOVEMBER 11-Friday-
We went back to the AZ Cancer Center yesterday to once again do a platelet check.
For the first time in 8 weeks, his platelets didn't drop!
They're still quite low (23,000), and we must continue to be extra careful he doesn't fall while they're low, but they didn't drop any lower!
He hasn't had a transfusion since Halloween. On that day, he had his 6th transfusion (since Sept.12th) which brought his count up to 39,000 (from a low 15,000)
After his Halloween transfusion, his counts resumed their steady day by day declines.
They were 33,000 on Wednesday the 2nd , 28,000 on Friday the 4th , and then down to 23,000 on Monday, Nov. 7.
All through these drops these last 10 days, the Docs opted not to transfuse. They really wanted to see if B would finally start to build some platelets on his own. If we hadn't seen this stabilization, I'm sure he would've had to have another transfusion yesterday.
But, yesterday's labs showed they were still at 23,000. No drop!! Finally!
It will be a huge milestone if his platelets have finally stabilized. Huge!
He will have them checked again early next week and I am cautiously excited we might even see an increase. I'll probably do a James Brown shuffle right there in the Doc's office if his platelets have finally done a little climbing on their own.
He is still feeling pretty darn sick, but I think climbing platelets will go a long way towards helping him feel better. Mentally and physically.
So, come on platelets!!
It's time to climb!
NOVEMBER 8-Tuesday-
We saw Doc Miller yesterday to go over the PET scan results. He had touched on them briefly Friday, but B was so sick, he was focused on figuring out what was causing this latest illness.
B's urinalysis showed elevated white cells and a few red cells as well, which indicated a possible UTI. The Doc thinks he may have Prostatitis . He basing this idea on the pain that B has had (in his hips and thighs) that, thus far, has been attributed to those large bones trying to make platelets.
Doc Miller thinks that pain may actually be linked to Prostatitis .
I'm not so sure I agree with this (based on my own research into what Prostatitis is, compared to what B has been experiencing), but we'll see.
B doesn't have any of the common symptoms for either a UTI or Prostatitis . At any rate, B's on the antibiotic and isn't quite as sick as he was on Friday, so he must have an infection somewhere that is responding to the meds. The nightly fevers have mostly diminished as well.
Anyway, back to the PET scan results, which we were able to focus on more in depth this visit.
It is hard to nail down exactly where B's at.
The Doc used terms like 'excellent remission' and '90% gone' in the same sentence.
But he also said that B cannot have any more treatments at all until his blood and marrow have bounced back completely. (which of course had me thinking, what's the plan with that other 10%?).
So, we're hoping that the 10% uptake activity that the PET scan is still seeing, is just inflammation, scar tissue, healing tissue or old junk, and not active lymphoma.
And my impression is that the Doc is leaning towards the later, that B is in remission.
And that, if there are traces of lymphoma that may still be there, the Doc seems to think the residual chemo, still in B's body, will continue to diminish it.
“Excellent remission” sounds great, and I'm optimistic.
But my mind has "what if it's not gone and he can't have any more treatments?" thoughts running right alongside "yippee, he's in remission!" thoughts, making my emotions mixed.
B can't do any more treatments for now. (Not even a maintenance mode).
So, I'm not sure, really, where we are long term.
I'm not sure, really, what to think about B's future.
But then, none of us really know, for sure, what our future's hold. None of us really know, for sure, how many more days we will have. The only thing we can be sure of is the here and now. Today.
So, we'll just let the future unfold as it will, and for now, simply take it day by day.
Today, our thoughts will be on, praying B's marrow starts working again (this has to start happening soon. B's platelet count (23,000) is still too low).
Today, while he remains a bleed risk, we will be extra careful he doesn't fall or hurt himself.
Today, while he still feels like he's been run over by a Mack truck, we will try to make him comfortable.
Today, we will pray, that tomorrow, he will start to feel and be better.
And then, when, he is finally feeling better, we will continue to take it day by day, celebrating each one.
One at a time, whether it perhaps be only another 500 more, or maybe, as many as 5,000 or more.
Live the life you want to live, right now, each and every moment, each and every day.
None of us are promised tomorrow.
NOVEMBER 6-Sunday-
Well, I didn't get my wish for a peaceful weekend for B.
He started feeling funky again Thursday night and by Friday morning I decided he needed to be seen by the Docs. The AZ Cancer Center said bring him right in when I called and had a battery of tests waiting for him when we got there.
The best they can figure based on preliminary results is B has an infection. So antibiotics were started Friday afternoon
While there, we were also able to get a brief update of Wednesday's PET scan results.
The PET scan uptake activity is practically gone! Wow.
The sad part is that B is feeling too sick right now to really appreciate these results.
We'll get more details this week, but Doc Miller thinks those completed chemo treatments, seem to have done their job.
So, the plan for the future will probably be a maintenance mode, with B getting a Rituximad treatment every 3 or 4 months, along with periodic PET scans to confirm the lymphoma's being kept at bay. Not sure how long he'll be in maintenance mode, but my guess is it will be for a year at minimum. I really hope the side effects of a maintenance mode Rituximad treatment are a non issue.
"Practically gone, no longer throughout the entire lung", is Doc Miller's description of the PET scan. Some accelerated uptake activity is still going on in the original tumor area, but Doc doesn't seem concerned that it's the bad stuff. He hinted he thought it was the similar to what would have been seen these last 11 years in that area, because, as we know, the original tumor area always lights up a bit. Scar tissue, a permanent collapsed state, infections and such do light up on PET scans. I guess somehow (color?) they can tell the difference between the really yukky stuff and the not so yukky stuff. I've got a bunch of questions to get this all clarified, but I think we got great news.
I think we got the news we've been hoping and praying for.
But B is a bit too sick right now to celebrate.
The side effects of those 3 rounds of chemo still have a stranglehold on B's body. He's not out of the woods yet, even though the clearing is in sight.
His marrow is still not working well. His bones ache.
The painful nueropathy is still in full force (although the uncontrollable twitches seem to be diminishing a bit).
And now, because of his suppressed immune system, he's got yet another infection with fever and flu like symptoms. So, while I know, he's aware of the good news, his main train of thought right now is just getting through each hour.
He's barely slept at all for the last 3 nights, and we know that's not good. He needs sleep.
So, my wish for tonight is the antibiotics hurry up and do their thing, and that he can finally get some sleep tonight.
So that tomorrow he will start feeling human again, and be able to celebrate that the Corkillians have almost knocked out the Lymphomians.
He, along with the healing energies sent by all of you (the Corkillian legions), may have almost won this latest Non-Hodgkins Lymphoma battle.
We are so close.
NOVEMBER 2, Wednesday-
Because his platelets still seem to be stuck in freefall mode, the AZ Cancer Center wanted to check his platelet counts yet again on Monday, Halloween.
I guess I wasn't kidding when I joked his costume should have been Dracula.
Wow, his platelets were low! (15,000, down from 24,000 on Friday)
And this time, his red counts were also low. So besides the standard unit of platelets (which brought his count to 39,000) , he also got 2 units of red blood as well. Dracula.
It takes about 2 hours a unit to infuse, plus premeds, waiting times and other stuff, so we were at the AZ Cancer Center from 7am 'til 5pm on Halloween. A long day, but an entertaining one. Quite a few of the AZ Cancer Center staff were in costume and the mood was festive. This place really is wonderful. Someday, I'm going to do a post just singing the praises of this amazing facility and it's equally amazing staff.
Anyway, after Dracula got his blood, we made a mad dash for home to give out candy, but alas, we didn't get one single trick-or-treater. Not one. Boy, times sure have changed.
Now we have way too much chocolate in the house. B does like chocolate, but this is ridiculous. And it's really not good for him right now (except for maybe the calories), so I'll be sending chocolate home with visitors.
Today, B had his much anticipated PET scan. The scan itself went well, with no discomfort for him.
We won't get results 'til early next week.
This is the PET scan that needs to show that the three rounds of treatments he was able to complete (before he was taken off the VCR chemo protocol) did the lions share of reducing the tumor.
I can't wrap my head around anything other than a good PET scan result. I will be broadsided if it is a poor result.
I'm sure hoping my intuition, instinct, gut feeling or whatever it is that's making me feel confident he will be okay is right on. If it's not, I'm not sure what will be next. I know I will be a puddle.
So, another long weekend ahead of waiting for results, but like similar weekends past, we will try not to dwell too much on it. And, of course, I'll let you all know as soon as we know.
In the meantime, please continue to hold B in your hearts, sending him happy, healing thoughts and prayers.
Today, we also had to stop by the AZ Cancer Center on the way home from the PET scan, for yet another quick platelet check.
They have dropped a bit since Monday (to 33,000 down from 39,000), but were not low enough to warrant another transfusion.
So, that's where we are tonight.
Here's to an uneventful weekend, with B continuing to feel (for the most part) okay.
Here's to restful nights, X-Box filled days, and then, come next week, good scan results.
Is that too much to ask for?
OCTOBER 28-Friday-
The AZ Cancer Center wanted to check B's platelets again today. The labs showed they have dropped to 24,000, down from Tuesday's post transfusion 44,000. Surprisingly, they decided not to give him another transfusion though.
Today, many of B's IBM coworkers had a picnic at Udall park. B was invited, but we weren't sure if he'd be well enough to make it. He felt pretty good, so we stopped by on our way home from the AZ Cancer Center. He really enjoyed seeing everyone again and especially enjoyed the music provided by these multi-talented IBM folks. Fun!
Ok, now on a different note. (insert Twilight Zone music here).
A few weeks ago I began to jokingly refer to an area just outside our house as 'The Bermuda Triangle'. It consists of a bit of our driveway and the sidewalk that leads from our garage, around the front of our house, to our front door.
Many times, B has fallen or almost fallen in this area!
So, he's forbidden from even thinking about negotiating that walk without me. I remind him that, even if he's feeling strong and great, he must 'respect The Triangle'. Out of nowhere, he suddenly becomes weak, and then his legs simply buckle.
And, this is a walk he has to take every time we come home from being out.
I've developed a system to get him through that stretch of strange real estate.
First, I tell him as he gets out of the car to "make sure your feet are under you", to check that he's feeling strong and not the least bit dizzy. (He always looks down and says, “Yep, those are my feet”).
Then I shadow him. Closely. It probably looks strange to our neighbors to see me walking right behind him, arms outstretched at the ready, just in case.
But this way, when his legs do mysteriously go out from under him, I have been right there to catch and hold him up 'til the weakness episode ends. (except once, the first time it happened).
Well, The Triangle hadn't struck for almost two weeks of comings and goings, but thankfully I was still in my 'respect The Triangle' mode when we got home from the park.
And sure enough. It happened again!
Down he almost went. He actually did fall further down this time 'cause I was being just a bit complacent (lulled by two fall-free weeks and admiring the flowers along the walkway), but thankfully I was still able to catch and hold him as he went down (softly)on his knees. Another controlled fall, with me holding on like crazy to guide him down.
Thankfully (low platelets and all) he didn't bump his noggin.(His knees are okay too).
When we'd recovered and were tucked safely inside the house, we just looked at each other incredulously. We really couldn't believe 'The Triangle' had struck again.
I mean, one second he's great, then the next, down he starts to go. Only on this section of pathway.
Paved. Free of clutter. Level. No obstacles. (Although I bet the magnetic energy is off the charts.)
We are mystified.
Dang Triangle.
OCTOBER 27-Thursday-
B slept most of the night and woke up feeling.....GOOD!!
Bone pain is under control again and he's up and about, in great spirits.
Looking forward to a great day.
(We're doin' a happy dance)
OCTOBER 26-Wednesday-
Well, this has been a very long day.
The good news is he handled the Gabapentin just fine. No dizziness, so I will keep on giving him the extra daytime dose. We heard from a good friend that Gabapentin worked miracles on her Nueropathy. I hope B will get the same result.
The bad news is, yesterday's Nuepogen shot (to boost his white blood cell count), has taken his bone pain to a whole new level. Although a temporary side effect, it's breaking my heart to see him so miserable all day.
This seems to be the pattern. He gets a couple of good days, then takes a step back.
I sure hope this new pain is gone by morning, and he can start moving forward again.
Poor guy.
OCTOBER 25-Tuesday-
Yesterday we saw Dr. Rivero, the UMC Neurosurgeon who treated B in the ER when he first broke his back. B had a CT scan first, then Doc Rivero went over the results.
B's back is healing, but slooooooowly. He is building new bone, but still has a distinct break (gap) right in the middle of the L1 vertebrae.
So, at least 6 more weeks in the back brace then we'll check the progress again.
We are okay with this. We were a bit worried we could hear bad news, like “it's not healing at all” or “you need surgery” or something yukky like that, so slow healing is better than no healing.
I mean, his poor bones are working overtime right now. I think as the old (Velcade/Cladrabine) chemo poison continues to be purged from his system, and when his platelets start to bounce back (giving his marrow a chance to rest), his back will begin to heal a bit faster.
Unfortunately, the platelets aren't cooperating yet.
Today, we had yet another visit to the AZ Cancer Center to check B's platelet count.
And, once again, yep, the platelets had dropped, this time to 17,000 (from Monday's 50,000).
Dang, that's low. (Normal is 150,000-400,000).
So another transfusion, the 5th in as many weeks.(Got his platelet count up to 44,000)
But despite the low counts (whites were low too, thus another Nuepogen shot), he felt really good today. For the first time in two weeks, he was able to walk at the AZ Cancer Center (with a walker), instead of needing a wheelchair.
Last night, he slept 8 hours straight, the first time for that in over a month. Sleep is a wonderful healer. I hope he's able to repeat that tonight (and many more nights as well).
Here's a potentially positive side note to our Monday visit to Doc Rivero.
As a Neurosurgeon, he knows quite a bit about Nueropathy and suggested we try doubling up B's dose of Gabapentin. This med is used mostly to treat epilepsy, but research has found that it can be quite effective in treating Nueropathy. Currently, B takes this med only once a day, at bedtime, because it can cause dizziness (and we don't need another fall). Doc Rivero suggested we experiment once with an AM dose to see how B tolerates it. Apparently, dizziness is a side effect in only some people, and if B doesn't get the dizziness, he probably won't have that issue.
If B can double up on this med, then maybe (fingers crossed), his Nueropathy may begin to heal much faster.
The cancer doc thinks he should try it, so we will tomorrow. Under my watchful eye. (We wouldn't want him to fall down and bump his noggin while his platelets are so darn low).
Hmmm. I'm wondering. Could discovering this newfound (potentially really helpful Nueropathy medicine) info from the Neurosurgeon be a result of all those positive vibes you've been sending B's way?
Our continued thanks to all of you for all your kind notes, cards, words of encouragement and those much needed positive vibes and prayers.
OCTOBER 22-Saturday-
The AZ Cancer Center wanted to check B's platelets again, so we went back in on Thursday. While they had dropped, it wasn't as big a drop as he'd been having. Monday, the blood transfusion got his count up to 57,000 (from 20,000) and by Thursday they had only dropped to 50,000.
His white count had dropped a bit too, so he got a Nuepogen shot to give that count a boost.
Considering he had treatment Monday, he's doing surprisingly well. Yesterday he was a bit yukky, but Tuesday, Wednesday, Thursday and today he's been pretty darn good.
A different person from the incredibly sick guy he was just two weeks ago!
I'm so encouraged that maybe, just maybe, some of the worst of it is over for him.
The Neuropathy is the same, but I've heard from a number of you who know first hand about chemo induced Nueropathy . You've all said it just takes time, but, with time, it will get better.
Our niece Briana stopped by tonight with her guitar and B played it for about 30 seconds before the finger pain became too intense. It was good to see him want to give it a go, if even for a few seconds. We're feeling more confident that he will one day play again. B's Doc feels confident he will too. We just have to be patient and let time do it's healing thing.
Next week, B will have a CT scan of his broken back and see the ER Nuerosurgeon. First follow-up visit since he broke it, but it's feeling better, so here's hoping the CT scan will confirm that it's healing up the way it should be.
All in all, things are getting better.
And if B's early November PET scan shows the tumor to be gone or almost gone, things will be great!
Right now, B is playing the new Batman game on his X-Box. He hasn't played X-Box for over two months.
Holy Guacamole! He's a different person from the incredibly sick guy he was just two weeks ago!
Yes!
OCTOBER 18-Tuesday-
Yesterday B has his first treatment of just the Rituximad.
Once again, his AZ Cancer Center visit started with labwork to see where his platelet count was and, once again, it has dropped, down to 20,000 from last week's 38,000.
So, another blood transfusion.
B has hardly shown any improvement in his overall well being this whole week. But, at least, he didn't go backwards. The pain meds sorta worked, but his itching, while not keeping him awake, continued to torment him when he was awake.
Yesterday, I went over yet another list of requests with the docs about getting this pain and itching more under control and today, with a few changes in his meds, I saw some improvement in him. Maybe a step forward, after being quagmired for weeks.
I am cautiously encouraged.
Now, if only the Neuropathy would also start to show signs of getting better as well. His fingers simply don't work. Not only do they not work, they HURT. A lot. And so do his toes.
He can't button his shirts, unwrap candy, type on his computer very well and he drops stuff all the time.
We had a two sentence discussion yesterday about how this might affect his guitar playing (which he hasn't been able to do at all for months).
Me- “Have you thought about how this (nueropathy) will affect your guitar playing?”(Really, I asked him this? Duh! As soon as I'd asked it, I wished I could have taken it back. Darn impulse speaking!).
B- “I can't even think about that 'cause it could depress me too much.”
I just can't wrap my head around what a cruel twist of fate that would be. What if the chemo has taken this amazing guitarist's gift of expression from him?
I'm holding onto the memory of when he had vocal chord cancer (6 years ago) and was told (by the docs) he would never sing again.
Well, he proved them wrong and did sing again, beautifully.
And I believe he will play guitar again too.
I sure wish he could start to see some improvement. Even a little bit, so he will know this Neuropathy is not a permanent thing for him, so he begins to know he will play guitar again.
So, I have a request from all of you this week.
Please put this thought out into the universe, through prayer or whatever positive energy you want to use.
Please picture our B, happily playing his guitar, and ask the powers that be, to begin to take his Neuropathy away. This week. Even if it's just a little bit. Give him a sign so he'll know that one day he will be ok again.
Please let him begin to really heal, to be pain (and itch) free and stronger.
To be over the worst of it. Please.
And one more thing. For the time being, if you write him a note, don't mention the guitar playing thing. I guess until he starts to know he will be ok in that regard, it's better (for his spirits) to not bring it up.
OCTOBER 10-Monday
A new plan.
Last Thursday, after B got his platelets, it was decided that we would return to the AZ Cancer Center today to measure his platelets again, and, depending on those results, perhaps he would begin Round 4 of chemo today.
Well, the counts were once again low (38,000), down from the 80,000 post transfusion on Thursday.
Doc Miller has decided that he wants to take B out of the clinical trial.
He's worried that this VCR (Velcade Cladribine Rituximad ) Clinical Trial treatment is wreaking havoc on B's already weak bone marrow.
Doc Miller has decided to take a different approach, so, as he said to B today, “we don't lose you”.
So, no more chemo. No more Cladribine or Velcade.
Next week, he will get only one day of just the monoclonal antibody, Rituximad .
Then, in early November, B will have another PET scan to see where the tumor stands. If the tumor is gone or almost gone, B will get an infusion (every 3 months or so) of the Rituximad as maintenance for a year or two, with regular PET scans to be sure all is well.
Doc Miller feels that B will still find remission even with this reduced protocol.
So, that's the new plan.
B is disappointed, but I am not. The chemo was making B way too sick. I really thought Thursday morning, we could lose him. He needs this break.
I don't know for sure if this new approach will work, but my gut tells me it will.
And my gut was telling me that another round of VCR would cause B irreversible harm.
I am happy Doc Miller has decided to take a different approach, without chemo.
Here's what my brain knows.
- I know that Rituximad alone can and has successfully treated MALT lymphoma.
- I know that the PET scan showed the first two rounds of chemo had reduced B's tumor uptake activity by 50%.
- I know he had another whole treatment (Round 3) which I'm sure also reduced the tumor activity even more.
Here's what my heart (and gut) knows.
- I know this is the right decision. He will be OK even without all 6 rounds of the VCR chemo.
- I know that whatever tumor remains (after 3 rounds of chemo), it will be controlled and eliminated by just the Rituximad.
- I know if Round 4 of VCR didn't permanently damage or kill him, Round 5 or 6 would have.
- I KNOW he will be cancer free again.
I know it. I simply know it.
OCTOBER 8-Saturday-
Let me start by saying that B is remarkably better!
He turned the corner Thursday afternoon, after another visit to the AZ Cancer Center to check his platelet count.
On Monday, his labs had shown that his platelets were very low (26,000), but the Docs wanted to wait before giving him another transfusion, to see which way he was trending, up or down. Was he building platelets or still losing them?
Thursday morning, B was the sickest I have seen him yet. Scary sick! He had not slept more than a few minutes at a time since Monday night.
The powerful pain meds he got Monday caused terrible itching. Anti-itch meds did nothing. And the sleep-aid did not work at all.
He had to choose between pain relief or unbearable itching for several days, and couldn't sleep at all.
He was beyond exhausted by Thursday morning. As he put it, miserable in his own skin. He wanted to walk to escape his misery, but was too weak and several times almost fell again.
It was a harrowing few days.
He was scheduled for labwork at the AZ Cancer Center Thursday morning. It showed he was still trending downward. They were now 19,000. (down from 26,000 on Monday)
Have I mentioned that normal platelet counts are between 150,000-400,000? And B's have been in the 11,000-26,000 range without the help of transfusions.
After labs, another transfusion was ordered.
But more importantly, while getting platelets, he was also given new meds for pain, and this time, they worked! With minimal itching. He fell deep asleep while being infused, the first time he'd slept in days. Yes!
The platelet transfusion brought his count up to 80,000.
His pain is in the big bones. Hips and thighs. His bone marrow is working like crazy to bring his blood counts back up, and it's simply a very painful process.
The B I brought home from the AZ Cancer Center Thursday afternoon was night and day different from how he was in the morning. Color in his face, and even a smile. Wow.
Thursday night he slept for hours.
Yesterday morning, our B was back! Almost his normal self. He felt so good, he was even walking a bit without his walker, (although I have to say, I was not happy about this bravado).
Yesterday, he napped and ate and napped and visited with friends and napped had a wonderful restful, painfree day.
And, since last night he once again, got a full night's sleep, I'm pretty darn sure today will be another good one.
Yippee!!
OCTOBER 3-Monday-
Well, I got everything I asked for.
Well, I got everything I asked for.
- First, chemo has been postponed a week. (Mostly because his platelets are once again dangerously low), but the Docs also took one look at him and knew he was too sick. He will have more labwork done later in the week to see if he can rebuild the platelets on his own, and if not, he will have his 3rd blood transfusion in 3 weeks.
- Next, they gave him powerful pain meds, and they seem to be working. We both were able to nap for several hours today.
- And finally, he now has a med to help him sleep. He just took it (10:30pm), so here's hoping we get a somewhat normal night's sleep.
Note- I haven't cried once today, except (happy tears) when my good buddy Bob was able to fix this journal after all updates prior to Sept 13th mysteriously disappeared sometime within the last few days. I am now backing all entries up, just in case. Thank you, Thank you Bob!
Now it's time for Nite Nite.
Tuesday morning update- The pain meds have made him itch like crazy. I've just given him Benedryl and hope that will help. The sleeping meds didn't really help but that could be because of the intense itching. We were able to sleep a bit (about 4 hours total) which was a huge improvement over the last week's nightly average.
Now it's time for Nite Nite.
Tuesday morning update- The pain meds have made him itch like crazy. I've just given him Benedryl and hope that will help. The sleeping meds didn't really help but that could be because of the intense itching. We were able to sleep a bit (about 4 hours total) which was a huge improvement over the last week's nightly average.
OCTOBER 2-Sunday-
Maybe, like Samson, there was strength to be found in B's hair. He's pretty much gone downhill everyday since Tuesday. He's scary weak and in a lot of (bone and muscle) pain.
He almost fell again in the middle of the night. Because he is so weak, I had asked him to not get up without me, to please let me be nearby when he needed to walk about. But in his headstrong way, thinking he was ok, (and not wanting to bother me), he got up by himself to walk. I guess he got about 5 steps in before it hit him again. Thank goodness he was using the walker, which held him up just long enough for me to get to him.
I heard a strange noise, sprang from bed, and got to him just in time. Another controlled fall. Now he's been told (by me, in a firm, no nonsense voice this time) not to even think about walking without me spotting him, just in case. It is really quite the picture. Me (and Annie), following behind him (and his walker) like shadows, doing circuits through the house.
Besides weakness, another distressing side effect that's in full bloom is painful Neuropathy in his fingers and feet. The doc says it's probably the Velcade (Bortezomib) causing it. He's also lost motor skills in his fingers and can no longer play guitar. (We're told this should be temporary, but can take 6 months to clear up once chemo ends).
Round 4 of chemo is supposed to start tomorrow and boy do I have a list of requests for the docs when we see them.
Maybe, like Samson, there was strength to be found in B's hair. He's pretty much gone downhill everyday since Tuesday. He's scary weak and in a lot of (bone and muscle) pain.
He almost fell again in the middle of the night. Because he is so weak, I had asked him to not get up without me, to please let me be nearby when he needed to walk about. But in his headstrong way, thinking he was ok, (and not wanting to bother me), he got up by himself to walk. I guess he got about 5 steps in before it hit him again. Thank goodness he was using the walker, which held him up just long enough for me to get to him.
I heard a strange noise, sprang from bed, and got to him just in time. Another controlled fall. Now he's been told (by me, in a firm, no nonsense voice this time) not to even think about walking without me spotting him, just in case. It is really quite the picture. Me (and Annie), following behind him (and his walker) like shadows, doing circuits through the house.
Besides weakness, another distressing side effect that's in full bloom is painful Neuropathy in his fingers and feet. The doc says it's probably the Velcade (Bortezomib) causing it. He's also lost motor skills in his fingers and can no longer play guitar. (We're told this should be temporary, but can take 6 months to clear up once chemo ends).
Round 4 of chemo is supposed to start tomorrow and boy do I have a list of requests for the docs when we see them.
- First off, I want them to postpone chemo for at least a week. He's too darn sick. I can't imagine him being able to tolerate another round this soon without consequences while he's this ill.
- Next, we need better meds for pain.
- And finally, he needs something to help him sleep. We are both averaging about 1-2 hours of sleep a night since he broke his back. Lack of sleep is really taking it's toll on both of us. I think I spent most of today crying. And I know it's partly because I'm so darn tired. And I can't stand seeing him suffer this way.
Here's hoping I get my requests.
SEPTEMBER 27-Tuesday-
I think today, B is finally a bit better. His back still hurts a lot, but he's more mobile than he was all weekend. Today, he kept mentioning he wanted to go get a haircut. I told him his hair was fine (my way of avoiding a car ride since the last one ended up with him on the ground in the driveway).
But in B's typical headstrong way, since I wouldn't take him, he just called his brother to come get him, and off they went.
Well, the girl at the haircut place really did a number on him. He now looks like a cancer patient. He's practically bald. Think 1/64th of an inch. Really. And, no, that's not what he asked for.
We are having a laugh at the irony of it.
Doc Miller had said at the start of this journey that B wouldn't lose his hair this time because of the chemo, but then he couldn't have predicted B's run in with an inexperience stylist wielding clippers set on bald.
At least, like Samson, B's strength wasn't dependant on his hair length.
He had plenty of strength for the outing and stayed upright. Whew.
SEPTEMBER 24-Saturday-
In early January while driving home from a Happy Hour gig, a few weeks before we even had an inkling that B's cancer had returned, out of the blue, B made this statement:"I think if my cancer ever comes back, I don't want to go through any treatments again."
I was dumbfounded.
First of all, where did this idea come from (did he have a feeling something was up?)...and what the heck was he thinking?
I immediately poo-pawed that idea, telling him that of course he would treat it if it did return, that treatments had improved vastly since 2000, and side effects could be managed much easier than the last time.
I bring this up this morning because yesterday he had another setback and is still sick today. I flashed back to that January conversation this morning and can't help feel that, through my words that day, I have somehow let him down. The treatments have definitely not been easier on him this time.
He developed a bloody nose yesterday morning and, because his platelets had once again dropped dangerously low, we could not control the bleeding.
I raced him to the AZ Cancer Center , where they packed his nose and gave him another blood transfusion (second in 2 weeks), but the loss of blood really weakened him again.
When we returned home in the afternoon, he had another fall, this time on the hot driveway. And although this time I was right there next to him, I couldn't hold him up, so all I was able to do was make it a more controlled fall.
He didn't hit his head or break anything this time, except his spirit.
He seems defeated. And that's just not him.
I sure wish the powers that be, would be more gentle with him.
He needs this to get easier, not harder. Sooner, not later.
SEPTEMBER 21-Wednesday-
"I'm much too young to be this old" is what B said with a laugh this morning. But, all in all, he's really doing pretty darn good considering his back is broken. He continues to inspire me with his courage and humor.
We were able to come home from the hospital last Thursday afternoon, and have settled into a routine of sorts."I'm much too young to be this old" is what B said with a laugh this morning. But, all in all, he's really doing pretty darn good considering his back is broken. He continues to inspire me with his courage and humor.
The various meds he's on now are doing their jobs, so he's not in too much pain, his appetite is better, he's not nauseous, and finally, ta~daaa, he's not dizzy anymore (thank goodness!).
The after effects of the last chemo cycle have subsided and if his back wasn't broken, I think he'd be out and about by now. (probably finding his way into a guitar shop).
So, for now, we hope that with each day, he will continue to improve, so he will be ready for round 4 of chemo in a few weeks.
While I'm updating this morning, I'd like to add a few 'shout outs' to some of the folks who've been helping us along the way.
This list is by no means complete, so many have done so much, but this is what my sleep deprived little brain remembers at the moment.
- Jamie, our buddy boy, for the countless hours of entertaining company (at home and in the hospital) and for just being there and being you. We love you.
- Lila, for your perfectly timed ecards and emails.
- John and Donna, for taking care of our Annie Bo, multiple times on a moment's notice.
- Dave and Nan, for dinner and helping us get settled in after coming home from the hospital.
- Bob and Julia, for all the neat toys you've provided, like walkers, wheelchairs and such.
- B's brother Jeff, for all the Friday night dinners and movies.
- B's sister Kathy, for the angel pins for B's nurses and our cool 'Cancer Sucks' t-shirts.
- Rene 'A', for the cool music (CDs) you brought us. Good stuff!
- John, Jeanne and Bill, for the musical 'get well' serenade by phone.
- B's IBM co-workers, for all they do to help cover B's work, during the weeks he's not able to log on.
- All of you who have called or sent cards (he loves them!) and emails.
- And as always, our thanks to all of you who continue to send your love and support, thoughts, prayers, well wishes, and vibes for the greater good.
We sure appreciate everything you do!JANUARY 7-Saturday-
Hi everyone and … Happy New Year. Here's hoping this year will be just that.
Happy and Healthy for all of us.
B is still riding the transfusion train.
He never complains, but I can see this seemingly never ending trip is wearing on him.
Disappointment is written on his face each time a lab report shows his marrow still isn't working. But he quickly recovers, puts his brave face back on and says "there's nothing to do but to do it" as he heads for another transfusion.
I can now almost predict when his hemoglobin is low because of how pale he looks.
Our red blood (hemoglobin) carries the oxygen to all parts of our body and when it's low, B gets pale and really tired.
He doesn't really feel when his platelets and white counts are low, but we know how important those counts are in keeping him safe from bleeding and infections.
Last week's labs showed he needed all three blood components. Platelets, red blood and a Nuepogen shot to boost the white count. He got the platelets yesterday and will get the red blood on Monday.
If this continues for the next month or so, he will have another bone marrow biopsy to check the status of the marrow.
I've decided to start charting his blood counts so we will hopefully be able to spot the healing trend when it starts. (Not sure if I'll post that chart here or not.)
Come on stem cells, get going again!! Let's see some progress soon. Please.
B now walks mostly without the cane, although he describes himself as looking a bit like Joe Cocker with the way his arms swing to help his balance. He cracks me up.
Oh, and..... he's now even driving a bit!!
He hadn't driven in almost 6 months and I freaked out just a little when he casually asked for the car keys to run up to Target to get an Xbox headset. Actually, I felt positively wiggy and told him I wasn't sure if he was ready yet for that step forward.
But we all know B and how persuasive he can be, so after a few “Ah, What the heck's!!?", ..."I don't think so's!” ... and...."Forget about it's!", I soon relented and handed the keys over.
I know he needs to find snippets of normalcy as much as possible during this time, but handing them over felt a lot like the first time you give the keys to the car to your newly licensed teenager. A bit scary.
He's doing fine, even driving completely across town yesterday, singing with the radio, me doing my best to not be a side seat driver, letting him have fun. (Those who know me know that wasn't easy.)
He even got a nifty temporary handicap placard which lets him park up close and that's going to really help.
So, things are status quo for now.
While status quo isn't great, it's better than where he was a month ago (still in hospital).
And I hope a month from now, we will be able to say his damaged bone marrow is finally starting to work.
Wouldn't that be great?
DECEMBER 31-Saturday-
Wow. My last post was 12 days ago? Time has definitely gotten away from me. I thought I'd like to quickly get one more update in before the end of the year.
I'm happy to report that B continues to improve ever so slightly, day by day.
Last night, he was feeling so much better, he even wanted to stop by Still Cruisin's last Happy Hour gig of the year.
I was a bit nervous when all of a sudden he headed onstage and started singing with the boys. He tires quickly, and needs to sit down in a hurry when that happens. But he did fine! Seeing him singing and having so much fun was priceless. Surprisingly, I was able to relax and just enjoy each and every moment. It was great!
I think him using his cane as an air guitar was a cute touch. Singing without a guitar has always been unnatural to him, so I think that silly cane helped.
We're glad we got the chance to stop by and party with the gang. Besides being able to give Mareena and Steve their birthday spankings, we got to see so many friends we've missed these last 6 months.
He got good news from the nuerosurgeon on the 19th about his back.
It's almost healed completely!
He was able to start using the back brace less and less and is now brace free!
And he hasn't needed the walker at all the last 10 days, and is instead just using that cane now.
His other two big issues (blood levels and nueropathy) are still in full force, but his feeling better overall, is helping him cope. He's also gained back all 9 lbs he lost in the hospital. (Christmas chocolate, in many shapes and forms, is helping here.)
We did finally get the results of his bone marrow biopsy, and as of yet, it doesn't show the chromosome changes that would indicate Mylodysplastic Syndrome. Wow. That's good news so far.
What this means is that we will continue the weekly monitoring of his blood counts, transfuse when necessary, and pray that one of these weeks, the labs will start to show his marrow is back in business.
That is what Doc Chen says could happen. She still thinks his bone marrow could start to work again on it's own.
So, we are cautiously optimistic, although the lab results aren't cooperating just yet.
If the labs continue to show his marrow isn't working, then in about 6-8 weeks B will have another bone marrow biopsy to once again check to see if Mylodysplastic Syndrome is trying to rear it's ugly head.
Doc Chen also continues to be aggressive with getting B's whole body balance back in order.
She keeping his iGg(immunoglobulin), B-12, testosterone, Vit-D, and other levels in the normal zone to aid in his overall well being. He was very deficient on Vit D so he's currently on a loading dose. He takes 50,000 IU once a week for 4 weeks, then drops down to 2,000 IU once a day from then on.
His iGg(immunoglobulin) level has remained above 700, so he's not needed a transfusion of that yet since we left the hospital.
His nueropathy continues to be a big issue. No relief at all from the pain.
I know he's disappointed that his marrow and nerves aren't cooperating, but he's putting on his brave face and doing what needs to be done with that same grace and dignity he has had all along.
What I have witnessed this man go through these last 6 months and the courage he has shown throughout simply humbles me. He is amazing.
Here's hoping 2012 gives him the miracles he's been waiting for.
And here's hoping 2012 is good for all of you too.
DECEMBER 19-Monday-
I'll be brief for a change.
This last week was really good!
B, for the most part (dang nueropathy!), was feeling good almost every single day!
He did have 2 transfusions (platelets and red blood), plus a few Nuepogen shots to build his immune system, but we expect this will be somewhat the norm until his bone marrow stem cells recover.
Still no definitive results on the chromosome studies of the bone marrow biopsy to see if he has Mylodysplastic Syndrome. Probably hear this week. If he has it, that will add another difficult detour on B's journey back to good health, but we will try to keep our spirits positive, no matter what.
We are settling into the new routines that changing Docs and locations has presented.
We will also see the neurosurgeon this week to check the progress of B's broken back recovery.
And I suspect there will also be a few transfusions this week as well, but B is just feeling so much better, it's making everything easier.
He's walking without his walker at times, sleeping well and even has a bit of an appetite. He's regained 3 of the 9 lbs he lost while in the hospital.
Christmas this year is, of course, different, with zero time to shop or decorate, but we are strangely feeling the spirit more deeply than we have in many years past.
Priorities are crystal clear and we are celebrating each and every good day and moment we have.
We are blessed.
DECEMBER 12-Monday-
Today we had our first office visit with Dr. Chen.
I have mixed feelings about the visit.
Her Arizona Oncology facility didn't even begin to compare with the AZ Cancer Center facility, but I am trying to stay focused on the reasons B is choosing to see her.
Today we had our first office visit with Dr. Chen.
I have mixed feelings about the visit.
Her Arizona Oncology facility didn't even begin to compare with the AZ Cancer Center facility, but I am trying to stay focused on the reasons B is choosing to see her.
She has a great reputation and her care of Brian while he was in the hospital was really good.
She jumped right in trying to get to the bottom of B's platelet issues, she is directly tied to Northwest Hospital (which will be an asset should he need to be admitted again), and he likes her.
But the AZ Cancer Center is leaps and bounds more modern, organized and aesthetically pleasing than the Arizona Oncology office.
But the AZ Cancer Center is leaps and bounds more modern, organized and aesthetically pleasing than the Arizona Oncology office.
I keep having this feeling that we, in the long run, may not have jumped ship completely from the folks at the AZ Cancer Center.
Granted, the AZ Cancer Center's Docs are tied to UMC, and we won't be using that hospital again in an emergency.
And in hindsight, they may have dropped the ball diagnosing the infection that put B in the hospital, but he really wasn't showing symptoms two days earlier other than a fever.
Still, we can't have two separate oncology clinics treating B at the same time.
The bottom line for B right now is, he must make a choice between the AZ Cancer Center and Arizona Oncology.
He must put his faith in one set of Docs at a time and if, at some point, their course of treatment doesn't feel right, he can always change again.
And, right now, B chooses Dr. Chen and Arizona Oncology.
So, I had a difficult conversation with Nikki at the AZ Cancer Center this morning to let them know the current status and how we have gotten here.
I asked if they would like copies of all the tests and such that have been and will be done at Northwest Hospital. I would like to keep them up to date on B's condition should B decide/need to return to their facility at a later date. They were fine with this, agreeing to keep his file up to date, but they will not have anything to do with current treatment decisions.
I also thought that from the VCR clinical trial point of view, AZ Cancer Center would like to know about B's post chemo complications.
If this VCR combo proves too toxic for too many, they may even end the trial early, although I have no idea about any of the conditions of any other participants.
I was told today that they have a dedicated group of data technicians that do just that, follow every clinical trial participant, now and for the rest of their lives, to document the trial and it's eventual outcomes.
I asked Nikki to please thank Sandy Kurtin and Doc Miller for all their wonderful care and let them know how much we will miss them. It was very sad to sever this tie after over 11 years with this fine group of people and I cried saying goodbye.
We will miss the entire staff there. A lot.
We will miss the entire staff there. A lot.
So, it looks like we are going with Doc Chen and the Arizona Oncology team for the time being.
That being said, the lab results from today's visit show his platelets are low again. No surprise there. They are down to 21000 from Friday's (hospital transfused) post platelet 56,000 count.
No platelet transfusion today though. A few days of wait and see to see if they level off or keep dropping.
A month or so ago, he was holding steady at around 20,000 until the infection got him. I found out that infections can also cause platelet depletion so that could be a factor in why he dropped into the teens while he was so sick. Plus we know his bone marrow stem cells are damaged.
I have also discovered something neat about this journal.
I have also discovered something neat about this journal.
It has become a record of sorts with regard to treatments, tests, drugs, etc. More than once, it has come in handy when trying to recollect what's been done and when.
So with that in mind, I will probably add a few more medicine details here and there, to keep an even more accurate record. This will help with monitoring side effects and such. Could be a bit boring for you all to read at times, but it will be helpful for us in keeping track.
I mentioned last Tuesday that Doc Chen had started B on Cymbalta.
It is sometimes used to fight nueropathy, as well as help with appetite and depression.
B was surprised she thought he needed the depression part. He doesn't think he's depressed, just living a reality that sort of bites at the moment.
Anyway, at about the same time he started Cymbalta, I noticed his eyes became continually dilated (staying that way even after we came home).
I brought this to Doc Chen's attention while we were in the hospital, but she didn't know what might be causing it.
I brought this to Doc Chen's attention while we were in the hospital, but she didn't know what might be causing it.
It was disconcerting to me so, yep, I googled the side effects of Cymbalta, which was the newest drug added to his daily regimen and sure enough, dilated pupils was on the list.
Also on the list was low blood pressure and fainting upon standing. Really? Isn't low blood pressure and falling an issue for B? Heck, low blood pressure was what kept us in the hospital a few days extra. Could this new drug have caused that?
So, I had already planned on mentioning all this to Doc Chen this morning.
Also on the list was low blood pressure and fainting upon standing. Really? Isn't low blood pressure and falling an issue for B? Heck, low blood pressure was what kept us in the hospital a few days extra. Could this new drug have caused that?
So, I had already planned on mentioning all this to Doc Chen this morning.
Then, in the meantime, B had a fainting spell in the middle of the night Saturday. Luckily, I was right there spotting him as usual, but this was different from all the previous weakness issues he's had before.
He passed out cold, with little warning. I was able to hold onto him and get him to the floor without hurting him, but it was very surreal.
He passed out cold, with little warning. I was able to hold onto him and get him to the floor without hurting him, but it was very surreal.
I was talking to him the whole time I was getting him to the floor. One of his legs was bent in the wrong direction, so I was telling him I was going to try to straighten out that leg, lay him down and go call 911.
I was behind him, with him sort of sitting (passed out) and leaning against me, while I was trying to reach the bent leg and straighten it. My plan was to then lay him down completely , then get to the phone. But he woke up while I was straightening his leg. I think the cold tile floor had something to do with it.
He was surprised to find us there on the floor, but he recovered somewhat quickly, and was able to get up (with just a little help).
So, this brings me back to Cymbalta. We convinced Doc Chen this morning we weren't comfortable with this drug and told her why. We prefer Gabapentin.
So she said to stop taking it. Good. Done.
My apologies for going on and on here.
Hopefully I won't be so long winded with most updates, but there's a lot going on right now.
One more thing. Still no word on the bone marrow biopsy's more detailed results.
Probably hear something later in the week.
Keep praying for a miracle. B needs a miracle.
DECEMBER 9-Friday-
Two weeks ago today, I went to the Northwest Hospital's ER with a very, very sick Brian.
Today, I brought home a much, much better Brian.
While not out of the woods with regards to his bone marrow disorder (Doc says some bone marrow biopsy markers are leaning towards Mylodysplastic Syndrome), he seems to have beaten the infection that could have killed him.
He's lost 9 lbs and is still quite weak, but is very happy to be home.
And I am very happy to be able to bring him home and I must say, our Annie Bo is very happy to have him home too.
DECEMBER 6-Tuesday-
Hmmm. Preliminary results of the bone marrow biopsy are in.
And it’s mixed news.
The good news is there is no sign of leukemia or lymphoma.
The bad news is his bone marrow’s stem cells are damaged and unable to keep his blood levels stable. This includes platelets, white and red blood cells.
So Doc Chen says for the time being, she’s going to have to keep B on the platelet transfusion train. His platelets are currently 17000, so he’ll get that transfusion later today.
Today’s report is just preliminary and we’ll get even more details of the marrow biopsy as they continue pathology over the next few days.
Doc Chen is hopeful that within time, his marrow’s stem cells will recover on their own. She says he’s still within a post chemo window where this can occur.
And I guess, further pathology of the marrow biopsy could also reveal a condition called Mylodysplastic Syndrome. While it can be treated, when it is chemo induced, the treatment may be less effective. So, we don't want to see a diagnosis of Mylodysplastic Syndrome.
We want the stem cells to just be a bit chemo weakened, temporarily, and we need them to start to heal themselves over these next few months.
So B’s journey has taken a new turn.
He’s done fighting the lymphoma, but now is fighting this (chemo caused) bone marrow stem cell disorder.
Doc Chen is also changing the med B takes to fight his nueropathy. She started him on Cymbalta instead of Gabapentin. Not sure why, but it may have to do with B's mood.
All these latest setbacks have made B more emotional than I’ve ever seen him.
He’s trying to present a brave face, but I know he’s scared. And sad.
On top of all this, the infection that almost killed him is still hanging on a bit, and he is still in the hospital. Day 13.
He’d like to go home and hug his puppy.
Now, more than ever, he’ll be needing more of your prayers and positive vibes.
I’ll probably update again tomorrow.
DECEMBER 5-Monday-
Whew. B’s journey has been a roller coaster these last few weeks. Heck, it’s been a roller coaster these last few months.
My previous update mentioned we came to Northwest Hospital (instead of UMC) with B’s latest emergency.
That move brought a whole bunch of new Docs into the picture along with a whole new set of ideas and opinions, many of which were completely new to us.
We have met (and adore) a new Oncology doctor, Doctor Laurie Chen. She is simply wonderful. B is seriously considering letting her become his primary oncologist from now on. Her treat the whole body approach is exactly what B is needing right now as he tries to recover from the chemo.
Labs she ordered showed low IGg levels (which affect how you fight infection), low B-12, and even low testosterone along with all the other standard low counts he regularly has (platelets, hemoglobin and white blood cells).
All of these things can be attributed to the fierce VCR chemo he had a few months ago.
So far, Dr. Chen has given him 2 IVIG infusions (iGg-immunoglobulin to boost his immune system), a testosterone shot (which she thinks he should have monthly to rebuild strength), and, also, 3
Nuepogen shots (also immune system builders which she wants him to have daily for a while). I will probably give him these shots at home again like I did 11 years ago. He’s also received 2 units of red blood and of course, platelets (his count was 15000).
Her approach to platelet transfusions is somewhat different from what we have experienced with the AZ Cancer Center. She does not want to transfuse platelets unless he drops to around 15000.
She sites two reasons.
One, you can become immune to platelet transfusions over time if done too much. If that happens and you have an emergency where you need platelets to work, you may be compromised if you’ve had too many platelet transfusions.
Two, platelets are not refrigerated and the more transfusions you have, the more chance you have of getting a bacterial blood infection from the platelets themselves.
So, I think she’s going to let him hover around the 20000 mark without a platelet transfusion, and only give them to him if his counts fall into the teens.
We’ll see how that goes.
Today, B had a bone marrow biopsy. Hopefully this will show something (treatable!) to explain the platelet disorder. We should hear results within a day or two.
B’s been in the hospital now for 11 days so far. We thought today he would go home, but his blood pressure is misbehaving. Too low.
It’s been low since September and orthostatic hypotension (low blood pressure) was thought to be the cause of the fall that broke his back.
We heard today that the low blood pressure could be caused by autonomic nueropathy, a different type of nueropathy caused by the Velcade. Darn Velcade poison!
The nueropathy will take time to go away. In the meantime, he needs to stay super hydrated and eat and drink salty stuff to help raise his blood pressure. V-8’s and canned soup may now become somewhat daily staples. (These are high in sodium)
So, that’s where we are today.
Here’s hoping we get to go home tomorrow.
I’ve heard from a few folks that it’s beginning to look a lot like Christmas out there.
DECEMBER 2-Friday-
It’s been almost 2 weeks since I’ve had a chance to update this blog.
And there’s a ton to report so bear with me on what will probably be a lengthy update.
I know I mentioned in my last post that I was going to slow down my posts ‘til I had good news to report, but that’s not the reason this blog’s been silent.
As a matter of fact, I heard, from so many of you, that you wanted to hear it all, the heavy and the light, and wanted me to continue updating the same as I have been all this time.
So that’s what I was going to do.
Then, he got soooo sick, I simply didn’t have time to do any updates at all.
For those of you who aren’t on Facebook and get these journey updates through email notices, I apologize for not being able to let you know the latest. I haven’t been able to access my email at all these last two weeks (and still can’t). Hopefully, you’ve wandered back here on your own and are now catching up.
For those of you who have an idea of what’s been going on (through Facebook), I’ll get into a bit more detail now about these last few weeks.
We did go for our scheduled platelet transfusion on Wednesday, Nov. 23rd. It turned out he also needed more red blood, so he got two units of that as well.
Tuesday night/early Wednesday morning he was simply sick as ever. Fevers, transfusions, headache, nausea, weakness, chills... as so on.
The fevers were right on the edge of what's considered too high for him. It took an all night efforts of Tylenol and cool washclothes to stay out of the ER.
By Wednesday morning, his temp was once again normal, although he did run one once mid-afternoon during the transfusions. Then, by the time we went home at 6:30 Wednesday evening, his temp was normal again.
Unfortunately around 8:30 Wednesday evening, his temp started climbing again. It was another long difficult night of fighting fevers, but we were able to keep them below the danger zone.
Because the next day was Thanksgiving and we knew all the hospitals were on those skeleton crews we’d been warned about, B did not want to go to the ER. He was afraid we’d have repeats of our last two experiences with UMC’s ER (19 and 26 hour waits) and simply did not want to endure that again.
I, along with his family, were torn between taking him in or abiding by his wishes, and we opted for the later.
He wanted to have Thanksgiving at home, with his family around him.
He was on meds again and we thought he would start feeling better once they took hold.
Boy, were we wrong.
Throughout late Thursday night, and the wee hours of Friday morning, he really started to decline and started to show other symptoms of infection, so my plan was to call the Cancer Center first thing Friday morning and get him in there.
When morning came and I called, I got a recording that the Cancer Center was closed. I lost it. After crying for a few minutes, I gathered him up and off we went to the ER.
We decided to try a different hospital.
We went to Northwest Hospital instead of UMC. Mostly because B’s sister works for a hospice and spends quite a bit of time at Northwest. When I let her know I was taking B to the ER, she urged us to try Northwest this time.
That was exactly the right thing to do. His care began immediately and he was in a room within 4 hours.
He was in really bad shape. I’ve used the expression scary bad before, but this time it was SCARY BAD.
The Docs were saying things we’d not heard before, like if your heart stops or if you stop breathing, do you want to be resuscitated or ventilated or what.
They were telling us they weren’t sure they could get the infection under control and that there was a real possibility it could kill him.
Wow. Really? We were just plain scared!
B was delirious, and speaking nonsense. He was going in and out of dreams, and talking about understanding the universe. It was breaking our hearts.
And we were all kicking ourselves for not getting him in on Thanksgiving. For waiting. Talk about heavy, we had cinder blocks being stacked on us, and it was surreal.
Now for some lighter news.
He’s responding to the antibiotics, and has been improving steadily day by day.
His condition has gone from critical to stable.
We’ve been here at Northwest a week now and could be here another week. I’m good with that. I want to take home a healthy, thriving B with no possibilities of setbacks.
We have family staying at our home, so our sweet dog Annie is being care for and the plants are getting watered and stuff, so we aren’t worried about the homefront.
We’ve had a ‘village’ of friends and family taking care of anything that’s been needed and B and I are settled in nicely at Northwest. I haven’t been home since last Friday, but I’m okay.
B asked me to stay, to not leave, and that’s my plan. I’ll go home when he goes home.
We’ve also had a whole slew of new doctors looking at the overall picture of B’s medical problems and may have a few new ideas on the bone marrow/platelet thing that’s been going on these last few months.
We’ll see, and I’ll get into more detail on that later.
So, for now, he’s stable.
Yesterday, he felt and looked so much better than he had in a while.
Today, because of his blood counts and such being low again, he's not feeling as good.
Today he’s getting platelets, (pre-21,000, post-56,000) some more red blood, a Nuepogen shot, an IVIG infusion along with a few other things. Hopefully, all these things will have him feeling as good as he was yesterday, if not better.
A few days ago, our wonderful friends, Bill, John and Jeanne Ronstadt came to his room with their musical instruments and magical harmonies and gave B a two hour ‘musical bath’ that was amazing.
We are blessed.
The outpouring of love and affection for B, this gentle, wonderful human being, has been off the charts and he’s humbled and thankful for all of it. Thank you all.
He’s going to be okay.
We all just know it.
More later.
NOVEMBER 21-Monday-
Thursday morning's pain miracle lasted about 40 hours. Soon after updating this blog on Friday, he started feeling pain again.
The good thing is that it wasn't nearly as bad as it was before. Uncomfortable but not excruciating.
B says his bad days are getting better and his good days are pretty darn good.
Today, we went to the AZ Cancer Center for a platelet check.
Dang if those pesky platelets hadn't fallen again. The count was a very low 20,000.
The doc's decided to wait until Wednesday to transfuse B so he has high counts during the holiday weekend (when most medical facilities have skeleton crews). Just in case.
The next few days, we'll be especially in that 'don't bump a noggin' mode 'til he gets his transfusion.
So I guess, in some ways, he's going in the right direction, feeling better and all. But it will be great when his bone marrow joins the procession and starts making platelets on it's own.
I'm beginning to sound like a broken record. Platelets, transfusions, platelets, transfusions.
A friend called the other day saying she had finally gotten a chance to read this journal.
“Sorta depressing” is what she called it.
Made me wonder if I shouldn't just wait and update only when we have good things to report.
As I write it, I try to make the updates as light as possible, but, it quite simply hasn't been very light for B for a while.
Still, I get it. While it's hard to make heavy, light, it's also hard to read non-stop heavy.
So maybe, for a while, I'll focus mostly on updating only the good news, the big and little steps forward.
Of course, reporting mostly just good news could mean I won't be updating as much, but, I'm hoping that won't be the case.
Here's hoping there will be tons of good stuff happening and I'll be busier than ever with this journal.
We'll see.
NOVEMBER 18-Friday-
Yesterday morning, around 6am, B says he was awakened from sleep by the sensation that something had lifted him up by his arms, then released him.
He says it kinda hurt at first, but then as he lay there awake, it occurred to him that the excruciating pain he's had for almost 3 months in his legs and especially his feet, was gone. Gone.
Then he got scared that maybe he had become paralyzed somehow while sleeping. He started touching his feet and legs and was relieved he could still feel that touch.
Then he said he started giggling. It was as if a switch had turned off the pain. He simply couldn't believe it.
Well, it's been almost 36 hours, and he's still, for the most part, pain free.
I say, for the most part, because he's still on some mighty powerful pain meds. But those pain meds hadn't even touched the pain he'd been having in his legs and feet these last few months.
So, I don't know how he'd feel without the pain meds, but I do know that he is finally comfortable.
He's the most like his old self that I've seen in a very long time.
We needed this miracle.
It's been a tough few days and B feeling better has made carrying the weight of these last few days more bearable.
Our son and his wife's newest little baby was stillborn Wednesday morning, two of our best friends own battles with cancer are at crucial turning points and this afternoon, B's brother Jay, had cancer surgery. We are grieving for our kids and our little angel grandson. Our two dear friends and Jay's cancer outlooks are yet to be determined.
B and I were talking about how 'heavy' the last few days have been for our families and friends and how grateful we are that B got this little miracle yesterday.
We are giving thanks to the powers that be and praying that miracles will touch Chip, Lisa, Bill, Melanie and Jay as well.
NOVEMBER 14-Monday
We went back to the AZ Cancer Center today for another platelet check.
I didn't get to do the James Brown shuffle slide just yet.
B's count was 22,000. The platelets had dropped, but, on the bright side, only 1000 since Thursday.
So while they didn't climb, which was our hope, they still seem to be somewhat stable at least.
The Doc decided to go ahead and transfuse today, just to be safe, since 22,000 is really low and he doesn't want B to have any bleeding complications that may occur with counts that low.
B's post transfusion count was 60,000.
He will have them checked again within the week and hopefully he will maintain that number or maybe even add to it.
I still intend to celebrate climbing platelets with an 'I feel good' shuffle slide sure to make a few eyebrows rise.
Hopefully soon.
And hopefully, I won't embarrass B too much.
NOVEMBER 11-Friday-
We went back to the AZ Cancer Center yesterday to once again do a platelet check.
For the first time in 8 weeks, his platelets didn't drop!
They're still quite low (23,000), and we must continue to be extra careful he doesn't fall while they're low, but they didn't drop any lower!
He hasn't had a transfusion since Halloween. On that day, he had his 6th transfusion (since Sept.12th) which brought his count up to 39,000 (from a low 15,000)
After his Halloween transfusion, his counts resumed their steady day by day declines.
They were 33,000 on Wednesday the 2nd , 28,000 on Friday the 4th , and then down to 23,000 on Monday, Nov. 7.
All through these drops these last 10 days, the Docs opted not to transfuse. They really wanted to see if B would finally start to build some platelets on his own. If we hadn't seen this stabilization, I'm sure he would've had to have another transfusion yesterday.
But, yesterday's labs showed they were still at 23,000. No drop!! Finally!
It will be a huge milestone if his platelets have finally stabilized. Huge!
He will have them checked again early next week and I am cautiously excited we might even see an increase. I'll probably do a James Brown shuffle right there in the Doc's office if his platelets have finally done a little climbing on their own.
He is still feeling pretty darn sick, but I think climbing platelets will go a long way towards helping him feel better. Mentally and physically.
So, come on platelets!!
It's time to climb!
NOVEMBER 8-Tuesday-
We saw Doc Miller yesterday to go over the PET scan results. He had touched on them briefly Friday, but B was so sick, he was focused on figuring out what was causing this latest illness.
B's urinalysis showed elevated white cells and a few red cells as well, which indicated a possible UTI. The Doc thinks he may have Prostatitis . He basing this idea on the pain that B has had (in his hips and thighs) that, thus far, has been attributed to those large bones trying to make platelets.
Doc Miller thinks that pain may actually be linked to Prostatitis .
I'm not so sure I agree with this (based on my own research into what Prostatitis is, compared to what B has been experiencing), but we'll see.
B doesn't have any of the common symptoms for either a UTI or Prostatitis . At any rate, B's on the antibiotic and isn't quite as sick as he was on Friday, so he must have an infection somewhere that is responding to the meds. The nightly fevers have mostly diminished as well.
Anyway, back to the PET scan results, which we were able to focus on more in depth this visit.
It is hard to nail down exactly where B's at.
The Doc used terms like 'excellent remission' and '90% gone' in the same sentence.
But he also said that B cannot have any more treatments at all until his blood and marrow have bounced back completely. (which of course had me thinking, what's the plan with that other 10%?).
So, we're hoping that the 10% uptake activity that the PET scan is still seeing, is just inflammation, scar tissue, healing tissue or old junk, and not active lymphoma.
And my impression is that the Doc is leaning towards the later, that B is in remission.
And that, if there are traces of lymphoma that may still be there, the Doc seems to think the residual chemo, still in B's body, will continue to diminish it.
“Excellent remission” sounds great, and I'm optimistic.
But my mind has "what if it's not gone and he can't have any more treatments?" thoughts running right alongside "yippee, he's in remission!" thoughts, making my emotions mixed.
B can't do any more treatments for now. (Not even a maintenance mode).
So, I'm not sure, really, where we are long term.
I'm not sure, really, what to think about B's future.
But then, none of us really know, for sure, what our future's hold. None of us really know, for sure, how many more days we will have. The only thing we can be sure of is the here and now. Today.
So, we'll just let the future unfold as it will, and for now, simply take it day by day.
Today, our thoughts will be on, praying B's marrow starts working again (this has to start happening soon. B's platelet count (23,000) is still too low).
Today, while he remains a bleed risk, we will be extra careful he doesn't fall or hurt himself.
Today, while he still feels like he's been run over by a Mack truck, we will try to make him comfortable.
Today, we will pray, that tomorrow, he will start to feel and be better.
And then, when, he is finally feeling better, we will continue to take it day by day, celebrating each one.
One at a time, whether it perhaps be only another 500 more, or maybe, as many as 5,000 or more.
Live the life you want to live, right now, each and every moment, each and every day.
None of us are promised tomorrow.
NOVEMBER 6-Sunday-
Well, I didn't get my wish for a peaceful weekend for B.
He started feeling funky again Thursday night and by Friday morning I decided he needed to be seen by the Docs. The AZ Cancer Center said bring him right in when I called and had a battery of tests waiting for him when we got there.
The best they can figure based on preliminary results is B has an infection. So antibiotics were started Friday afternoon
While there, we were also able to get a brief update of Wednesday's PET scan results.
The PET scan uptake activity is practically gone! Wow.
The sad part is that B is feeling too sick right now to really appreciate these results.
We'll get more details this week, but Doc Miller thinks those completed chemo treatments, seem to have done their job.
So, the plan for the future will probably be a maintenance mode, with B getting a Rituximad treatment every 3 or 4 months, along with periodic PET scans to confirm the lymphoma's being kept at bay. Not sure how long he'll be in maintenance mode, but my guess is it will be for a year at minimum. I really hope the side effects of a maintenance mode Rituximad treatment are a non issue.
"Practically gone, no longer throughout the entire lung", is Doc Miller's description of the PET scan. Some accelerated uptake activity is still going on in the original tumor area, but Doc doesn't seem concerned that it's the bad stuff. He hinted he thought it was the similar to what would have been seen these last 11 years in that area, because, as we know, the original tumor area always lights up a bit. Scar tissue, a permanent collapsed state, infections and such do light up on PET scans. I guess somehow (color?) they can tell the difference between the really yukky stuff and the not so yukky stuff. I've got a bunch of questions to get this all clarified, but I think we got great news.
I think we got the news we've been hoping and praying for.
But B is a bit too sick right now to celebrate.
The side effects of those 3 rounds of chemo still have a stranglehold on B's body. He's not out of the woods yet, even though the clearing is in sight.
His marrow is still not working well. His bones ache.
The painful nueropathy is still in full force (although the uncontrollable twitches seem to be diminishing a bit).
And now, because of his suppressed immune system, he's got yet another infection with fever and flu like symptoms. So, while I know, he's aware of the good news, his main train of thought right now is just getting through each hour.
He's barely slept at all for the last 3 nights, and we know that's not good. He needs sleep.
So, my wish for tonight is the antibiotics hurry up and do their thing, and that he can finally get some sleep tonight.
So that tomorrow he will start feeling human again, and be able to celebrate that the Corkillians have almost knocked out the Lymphomians.
He, along with the healing energies sent by all of you (the Corkillian legions), may have almost won this latest Non-Hodgkins Lymphoma battle.
We are so close.
NOVEMBER 2, Wednesday-
Because his platelets still seem to be stuck in freefall mode, the AZ Cancer Center wanted to check his platelet counts yet again on Monday, Halloween.
I guess I wasn't kidding when I joked his costume should have been Dracula.
Wow, his platelets were low! (15,000, down from 24,000 on Friday)
And this time, his red counts were also low. So besides the standard unit of platelets (which brought his count to 39,000) , he also got 2 units of red blood as well. Dracula.
It takes about 2 hours a unit to infuse, plus premeds, waiting times and other stuff, so we were at the AZ Cancer Center from 7am 'til 5pm on Halloween. A long day, but an entertaining one. Quite a few of the AZ Cancer Center staff were in costume and the mood was festive. This place really is wonderful. Someday, I'm going to do a post just singing the praises of this amazing facility and it's equally amazing staff.
Anyway, after Dracula got his blood, we made a mad dash for home to give out candy, but alas, we didn't get one single trick-or-treater. Not one. Boy, times sure have changed.
Now we have way too much chocolate in the house. B does like chocolate, but this is ridiculous. And it's really not good for him right now (except for maybe the calories), so I'll be sending chocolate home with visitors.
Today, B had his much anticipated PET scan. The scan itself went well, with no discomfort for him.
We won't get results 'til early next week.
This is the PET scan that needs to show that the three rounds of treatments he was able to complete (before he was taken off the VCR chemo protocol) did the lions share of reducing the tumor.
I can't wrap my head around anything other than a good PET scan result. I will be broadsided if it is a poor result.
I'm sure hoping my intuition, instinct, gut feeling or whatever it is that's making me feel confident he will be okay is right on. If it's not, I'm not sure what will be next. I know I will be a puddle.
So, another long weekend ahead of waiting for results, but like similar weekends past, we will try not to dwell too much on it. And, of course, I'll let you all know as soon as we know.
In the meantime, please continue to hold B in your hearts, sending him happy, healing thoughts and prayers.
Today, we also had to stop by the AZ Cancer Center on the way home from the PET scan, for yet another quick platelet check.
They have dropped a bit since Monday (to 33,000 down from 39,000), but were not low enough to warrant another transfusion.
So, that's where we are tonight.
Here's to an uneventful weekend, with B continuing to feel (for the most part) okay.
Here's to restful nights, X-Box filled days, and then, come next week, good scan results.
Is that too much to ask for?
OCTOBER 28-Friday-
The AZ Cancer Center wanted to check B's platelets again today. The labs showed they have dropped to 24,000, down from Tuesday's post transfusion 44,000. Surprisingly, they decided not to give him another transfusion though.
Today, many of B's IBM coworkers had a picnic at Udall park. B was invited, but we weren't sure if he'd be well enough to make it. He felt pretty good, so we stopped by on our way home from the AZ Cancer Center. He really enjoyed seeing everyone again and especially enjoyed the music provided by these multi-talented IBM folks. Fun!
Ok, now on a different note. (insert Twilight Zone music here).
A few weeks ago I began to jokingly refer to an area just outside our house as 'The Bermuda Triangle'. It consists of a bit of our driveway and the sidewalk that leads from our garage, around the front of our house, to our front door.
Many times, B has fallen or almost fallen in this area!
So, he's forbidden from even thinking about negotiating that walk without me. I remind him that, even if he's feeling strong and great, he must 'respect The Triangle'. Out of nowhere, he suddenly becomes weak, and then his legs simply buckle.
And, this is a walk he has to take every time we come home from being out.
I've developed a system to get him through that stretch of strange real estate.
First, I tell him as he gets out of the car to "make sure your feet are under you", to check that he's feeling strong and not the least bit dizzy. (He always looks down and says, “Yep, those are my feet”).
Then I shadow him. Closely. It probably looks strange to our neighbors to see me walking right behind him, arms outstretched at the ready, just in case.
But this way, when his legs do mysteriously go out from under him, I have been right there to catch and hold him up 'til the weakness episode ends. (except once, the first time it happened).
Well, The Triangle hadn't struck for almost two weeks of comings and goings, but thankfully I was still in my 'respect The Triangle' mode when we got home from the park.
And sure enough. It happened again!
Down he almost went. He actually did fall further down this time 'cause I was being just a bit complacent (lulled by two fall-free weeks and admiring the flowers along the walkway), but thankfully I was still able to catch and hold him as he went down (softly)on his knees. Another controlled fall, with me holding on like crazy to guide him down.
Thankfully (low platelets and all) he didn't bump his noggin.(His knees are okay too).
When we'd recovered and were tucked safely inside the house, we just looked at each other incredulously. We really couldn't believe 'The Triangle' had struck again.
I mean, one second he's great, then the next, down he starts to go. Only on this section of pathway.
Paved. Free of clutter. Level. No obstacles. (Although I bet the magnetic energy is off the charts.)
We are mystified.
Dang Triangle.
OCTOBER 27-Thursday-
B slept most of the night and woke up feeling.....GOOD!!
Bone pain is under control again and he's up and about, in great spirits.
Looking forward to a great day.
(We're doin' a happy dance)
OCTOBER 26-Wednesday-
Well, this has been a very long day.
The good news is he handled the Gabapentin just fine. No dizziness, so I will keep on giving him the extra daytime dose. We heard from a good friend that Gabapentin worked miracles on her Nueropathy. I hope B will get the same result.
The bad news is, yesterday's Nuepogen shot (to boost his white blood cell count), has taken his bone pain to a whole new level. Although a temporary side effect, it's breaking my heart to see him so miserable all day.
This seems to be the pattern. He gets a couple of good days, then takes a step back.
I sure hope this new pain is gone by morning, and he can start moving forward again.
Poor guy.
OCTOBER 25-Tuesday-
Yesterday we saw Dr. Rivero, the UMC Neurosurgeon who treated B in the ER when he first broke his back. B had a CT scan first, then Doc Rivero went over the results.
B's back is healing, but slooooooowly. He is building new bone, but still has a distinct break (gap) right in the middle of the L1 vertebrae.
So, at least 6 more weeks in the back brace then we'll check the progress again.
We are okay with this. We were a bit worried we could hear bad news, like “it's not healing at all” or “you need surgery” or something yukky like that, so slow healing is better than no healing.
I mean, his poor bones are working overtime right now. I think as the old (Velcade/Cladrabine) chemo poison continues to be purged from his system, and when his platelets start to bounce back (giving his marrow a chance to rest), his back will begin to heal a bit faster.
Unfortunately, the platelets aren't cooperating yet.
Today, we had yet another visit to the AZ Cancer Center to check B's platelet count.
And, once again, yep, the platelets had dropped, this time to 17,000 (from Monday's 50,000).
Dang, that's low. (Normal is 150,000-400,000).
So another transfusion, the 5th in as many weeks.(Got his platelet count up to 44,000)
But despite the low counts (whites were low too, thus another Nuepogen shot), he felt really good today. For the first time in two weeks, he was able to walk at the AZ Cancer Center (with a walker), instead of needing a wheelchair.
Last night, he slept 8 hours straight, the first time for that in over a month. Sleep is a wonderful healer. I hope he's able to repeat that tonight (and many more nights as well).
Here's a potentially positive side note to our Monday visit to Doc Rivero.
As a Neurosurgeon, he knows quite a bit about Nueropathy and suggested we try doubling up B's dose of Gabapentin. This med is used mostly to treat epilepsy, but research has found that it can be quite effective in treating Nueropathy. Currently, B takes this med only once a day, at bedtime, because it can cause dizziness (and we don't need another fall). Doc Rivero suggested we experiment once with an AM dose to see how B tolerates it. Apparently, dizziness is a side effect in only some people, and if B doesn't get the dizziness, he probably won't have that issue.
If B can double up on this med, then maybe (fingers crossed), his Nueropathy may begin to heal much faster.
The cancer doc thinks he should try it, so we will tomorrow. Under my watchful eye. (We wouldn't want him to fall down and bump his noggin while his platelets are so darn low).
Hmmm. I'm wondering. Could discovering this newfound (potentially really helpful Nueropathy medicine) info from the Neurosurgeon be a result of all those positive vibes you've been sending B's way?
Our continued thanks to all of you for all your kind notes, cards, words of encouragement and those much needed positive vibes and prayers.
OCTOBER 22-Saturday-
The AZ Cancer Center wanted to check B's platelets again, so we went back in on Thursday. While they had dropped, it wasn't as big a drop as he'd been having. Monday, the blood transfusion got his count up to 57,000 (from 20,000) and by Thursday they had only dropped to 50,000.
His white count had dropped a bit too, so he got a Nuepogen shot to give that count a boost.
Considering he had treatment Monday, he's doing surprisingly well. Yesterday he was a bit yukky, but Tuesday, Wednesday, Thursday and today he's been pretty darn good.
A different person from the incredibly sick guy he was just two weeks ago!
I'm so encouraged that maybe, just maybe, some of the worst of it is over for him.
The Neuropathy is the same, but I've heard from a number of you who know first hand about chemo induced Nueropathy . You've all said it just takes time, but, with time, it will get better.
Our niece Briana stopped by tonight with her guitar and B played it for about 30 seconds before the finger pain became too intense. It was good to see him want to give it a go, if even for a few seconds. We're feeling more confident that he will one day play again. B's Doc feels confident he will too. We just have to be patient and let time do it's healing thing.
Next week, B will have a CT scan of his broken back and see the ER Nuerosurgeon. First follow-up visit since he broke it, but it's feeling better, so here's hoping the CT scan will confirm that it's healing up the way it should be.
All in all, things are getting better.
And if B's early November PET scan shows the tumor to be gone or almost gone, things will be great!
Right now, B is playing the new Batman game on his X-Box. He hasn't played X-Box for over two months.
Holy Guacamole! He's a different person from the incredibly sick guy he was just two weeks ago!
Yes!
OCTOBER 18-Tuesday-
Yesterday B has his first treatment of just the Rituximad.
Once again, his AZ Cancer Center visit started with labwork to see where his platelet count was and, once again, it has dropped, down to 20,000 from last week's 38,000.
So, another blood transfusion.
B has hardly shown any improvement in his overall well being this whole week. But, at least, he didn't go backwards. The pain meds sorta worked, but his itching, while not keeping him awake, continued to torment him when he was awake.
Yesterday, I went over yet another list of requests with the docs about getting this pain and itching more under control and today, with a few changes in his meds, I saw some improvement in him. Maybe a step forward, after being quagmired for weeks.
I am cautiously encouraged.
Now, if only the Neuropathy would also start to show signs of getting better as well. His fingers simply don't work. Not only do they not work, they HURT. A lot. And so do his toes.
He can't button his shirts, unwrap candy, type on his computer very well and he drops stuff all the time.
We had a two sentence discussion yesterday about how this might affect his guitar playing (which he hasn't been able to do at all for months).
Me- “Have you thought about how this (nueropathy) will affect your guitar playing?”(Really, I asked him this? Duh! As soon as I'd asked it, I wished I could have taken it back. Darn impulse speaking!).
B- “I can't even think about that 'cause it could depress me too much.”
I just can't wrap my head around what a cruel twist of fate that would be. What if the chemo has taken this amazing guitarist's gift of expression from him?
I'm holding onto the memory of when he had vocal chord cancer (6 years ago) and was told (by the docs) he would never sing again.
Well, he proved them wrong and did sing again, beautifully.
And I believe he will play guitar again too.
I sure wish he could start to see some improvement. Even a little bit, so he will know this Neuropathy is not a permanent thing for him, so he begins to know he will play guitar again.
So, I have a request from all of you this week.
Please put this thought out into the universe, through prayer or whatever positive energy you want to use.
Please picture our B, happily playing his guitar, and ask the powers that be, to begin to take his Neuropathy away. This week. Even if it's just a little bit. Give him a sign so he'll know that one day he will be ok again.
Please let him begin to really heal, to be pain (and itch) free and stronger.
To be over the worst of it. Please.
And one more thing. For the time being, if you write him a note, don't mention the guitar playing thing. I guess until he starts to know he will be ok in that regard, it's better (for his spirits) to not bring it up.
OCTOBER 10-Monday
A new plan.
Last Thursday, after B got his platelets, it was decided that we would return to the AZ Cancer Center today to measure his platelets again, and, depending on those results, perhaps he would begin Round 4 of chemo today.
Well, the counts were once again low (38,000), down from the 80,000 post transfusion on Thursday.
Doc Miller has decided that he wants to take B out of the clinical trial.
He's worried that this VCR (Velcade Cladribine Rituximad ) Clinical Trial treatment is wreaking havoc on B's already weak bone marrow.
Doc Miller has decided to take a different approach, so, as he said to B today, “we don't lose you”.
So, no more chemo. No more Cladribine or Velcade.
Next week, he will get only one day of just the monoclonal antibody, Rituximad .
Then, in early November, B will have another PET scan to see where the tumor stands. If the tumor is gone or almost gone, B will get an infusion (every 3 months or so) of the Rituximad as maintenance for a year or two, with regular PET scans to be sure all is well.
Doc Miller feels that B will still find remission even with this reduced protocol.
So, that's the new plan.
B is disappointed, but I am not. The chemo was making B way too sick. I really thought Thursday morning, we could lose him. He needs this break.
I don't know for sure if this new approach will work, but my gut tells me it will.
And my gut was telling me that another round of VCR would cause B irreversible harm.
I am happy Doc Miller has decided to take a different approach, without chemo.
Here's what my brain knows.
- I know that Rituximad alone can and has successfully treated MALT lymphoma.
- I know that the PET scan showed the first two rounds of chemo had reduced B's tumor uptake activity by 50%.
- I know he had another whole treatment (Round 3) which I'm sure also reduced the tumor activity even more.
Here's what my heart (and gut) knows.
- I know this is the right decision. He will be OK even without all 6 rounds of the VCR chemo.
- I know that whatever tumor remains (after 3 rounds of chemo), it will be controlled and eliminated by just the Rituximad.
- I know if Round 4 of VCR didn't permanently damage or kill him, Round 5 or 6 would have.
- I KNOW he will be cancer free again.
I know it. I simply know it.
OCTOBER 8-Saturday-
Let me start by saying that B is remarkably better!
He turned the corner Thursday afternoon, after another visit to the AZ Cancer Center to check his platelet count.
On Monday, his labs had shown that his platelets were very low (26,000), but the Docs wanted to wait before giving him another transfusion, to see which way he was trending, up or down. Was he building platelets or still losing them?
Thursday morning, B was the sickest I have seen him yet. Scary sick! He had not slept more than a few minutes at a time since Monday night.
The powerful pain meds he got Monday caused terrible itching. Anti-itch meds did nothing. And the sleep-aid did not work at all.
He had to choose between pain relief or unbearable itching for several days, and couldn't sleep at all.
He was beyond exhausted by Thursday morning. As he put it, miserable in his own skin. He wanted to walk to escape his misery, but was too weak and several times almost fell again.
It was a harrowing few days.
He was scheduled for labwork at the AZ Cancer Center Thursday morning. It showed he was still trending downward. They were now 19,000. (down from 26,000 on Monday)
Have I mentioned that normal platelet counts are between 150,000-400,000? And B's have been in the 11,000-26,000 range without the help of transfusions.
After labs, another transfusion was ordered.
But more importantly, while getting platelets, he was also given new meds for pain, and this time, they worked! With minimal itching. He fell deep asleep while being infused, the first time he'd slept in days. Yes!
The platelet transfusion brought his count up to 80,000.
His pain is in the big bones. Hips and thighs. His bone marrow is working like crazy to bring his blood counts back up, and it's simply a very painful process.
The B I brought home from the AZ Cancer Center Thursday afternoon was night and day different from how he was in the morning. Color in his face, and even a smile. Wow.
Thursday night he slept for hours.
Yesterday morning, our B was back! Almost his normal self. He felt so good, he was even walking a bit without his walker, (although I have to say, I was not happy about this bravado).
Yesterday, he napped and ate and napped and visited with friends and napped had a wonderful restful, painfree day.
And, since last night he once again, got a full night's sleep, I'm pretty darn sure today will be another good one.
Yippee!!
OCTOBER 3-Monday-
Well, I got everything I asked for.
Well, I got everything I asked for.
- First, chemo has been postponed a week. (Mostly because his platelets are once again dangerously low), but the Docs also took one look at him and knew he was too sick. He will have more labwork done later in the week to see if he can rebuild the platelets on his own, and if not, he will have his 3rd blood transfusion in 3 weeks.
- Next, they gave him powerful pain meds, and they seem to be working. We both were able to nap for several hours today.
- And finally, he now has a med to help him sleep. He just took it (10:30pm), so here's hoping we get a somewhat normal night's sleep.
Note- I haven't cried once today, except (happy tears) when my good buddy Bob was able to fix this journal after all updates prior to Sept 13th mysteriously disappeared sometime within the last few days. I am now backing all entries up, just in case. Thank you, Thank you Bob!
Now it's time for Nite Nite.
Tuesday morning update- The pain meds have made him itch like crazy. I've just given him Benedryl and hope that will help. The sleeping meds didn't really help but that could be because of the intense itching. We were able to sleep a bit (about 4 hours total) which was a huge improvement over the last week's nightly average.
Now it's time for Nite Nite.
Tuesday morning update- The pain meds have made him itch like crazy. I've just given him Benedryl and hope that will help. The sleeping meds didn't really help but that could be because of the intense itching. We were able to sleep a bit (about 4 hours total) which was a huge improvement over the last week's nightly average.
OCTOBER 2-Sunday-
Maybe, like Samson, there was strength to be found in B's hair. He's pretty much gone downhill everyday since Tuesday. He's scary weak and in a lot of (bone and muscle) pain.
He almost fell again in the middle of the night. Because he is so weak, I had asked him to not get up without me, to please let me be nearby when he needed to walk about. But in his headstrong way, thinking he was ok, (and not wanting to bother me), he got up by himself to walk. I guess he got about 5 steps in before it hit him again. Thank goodness he was using the walker, which held him up just long enough for me to get to him.
I heard a strange noise, sprang from bed, and got to him just in time. Another controlled fall. Now he's been told (by me, in a firm, no nonsense voice this time) not to even think about walking without me spotting him, just in case. It is really quite the picture. Me (and Annie), following behind him (and his walker) like shadows, doing circuits through the house.
Besides weakness, another distressing side effect that's in full bloom is painful Neuropathy in his fingers and feet. The doc says it's probably the Velcade (Bortezomib) causing it. He's also lost motor skills in his fingers and can no longer play guitar. (We're told this should be temporary, but can take 6 months to clear up once chemo ends).
Round 4 of chemo is supposed to start tomorrow and boy do I have a list of requests for the docs when we see them.
Maybe, like Samson, there was strength to be found in B's hair. He's pretty much gone downhill everyday since Tuesday. He's scary weak and in a lot of (bone and muscle) pain.
He almost fell again in the middle of the night. Because he is so weak, I had asked him to not get up without me, to please let me be nearby when he needed to walk about. But in his headstrong way, thinking he was ok, (and not wanting to bother me), he got up by himself to walk. I guess he got about 5 steps in before it hit him again. Thank goodness he was using the walker, which held him up just long enough for me to get to him.
I heard a strange noise, sprang from bed, and got to him just in time. Another controlled fall. Now he's been told (by me, in a firm, no nonsense voice this time) not to even think about walking without me spotting him, just in case. It is really quite the picture. Me (and Annie), following behind him (and his walker) like shadows, doing circuits through the house.
Besides weakness, another distressing side effect that's in full bloom is painful Neuropathy in his fingers and feet. The doc says it's probably the Velcade (Bortezomib) causing it. He's also lost motor skills in his fingers and can no longer play guitar. (We're told this should be temporary, but can take 6 months to clear up once chemo ends).
Round 4 of chemo is supposed to start tomorrow and boy do I have a list of requests for the docs when we see them.
- First off, I want them to postpone chemo for at least a week. He's too darn sick. I can't imagine him being able to tolerate another round this soon without consequences while he's this ill.
- Next, we need better meds for pain.
- And finally, he needs something to help him sleep. We are both averaging about 1-2 hours of sleep a night since he broke his back. Lack of sleep is really taking it's toll on both of us. I think I spent most of today crying. And I know it's partly because I'm so darn tired. And I can't stand seeing him suffer this way.
Here's hoping I get my requests.
SEPTEMBER 27-Tuesday-
I think today, B is finally a bit better. His back still hurts a lot, but he's more mobile than he was all weekend. Today, he kept mentioning he wanted to go get a haircut. I told him his hair was fine (my way of avoiding a car ride since the last one ended up with him on the ground in the driveway).
But in B's typical headstrong way, since I wouldn't take him, he just called his brother to come get him, and off they went.
Well, the girl at the haircut place really did a number on him. He now looks like a cancer patient. He's practically bald. Think 1/64th of an inch. Really. And, no, that's not what he asked for.
We are having a laugh at the irony of it.
Doc Miller had said at the start of this journey that B wouldn't lose his hair this time because of the chemo, but then he couldn't have predicted B's run in with an inexperience stylist wielding clippers set on bald.
At least, like Samson, B's strength wasn't dependant on his hair length.
He had plenty of strength for the outing and stayed upright. Whew.
SEPTEMBER 24-Saturday-
In early January while driving home from a Happy Hour gig, a few weeks before we even had an inkling that B's cancer had returned, out of the blue, B made this statement:"I think if my cancer ever comes back, I don't want to go through any treatments again."
I was dumbfounded.
First of all, where did this idea come from (did he have a feeling something was up?)...and what the heck was he thinking?
I immediately poo-pawed that idea, telling him that of course he would treat it if it did return, that treatments had improved vastly since 2000, and side effects could be managed much easier than the last time.
I bring this up this morning because yesterday he had another setback and is still sick today. I flashed back to that January conversation this morning and can't help feel that, through my words that day, I have somehow let him down. The treatments have definitely not been easier on him this time.
He developed a bloody nose yesterday morning and, because his platelets had once again dropped dangerously low, we could not control the bleeding.
I raced him to the AZ Cancer Center , where they packed his nose and gave him another blood transfusion (second in 2 weeks), but the loss of blood really weakened him again.
When we returned home in the afternoon, he had another fall, this time on the hot driveway. And although this time I was right there next to him, I couldn't hold him up, so all I was able to do was make it a more controlled fall.
He didn't hit his head or break anything this time, except his spirit.
He seems defeated. And that's just not him.
I sure wish the powers that be, would be more gentle with him.
He needs this to get easier, not harder. Sooner, not later.
SEPTEMBER 21-Wednesday-
"I'm much too young to be this old" is what B said with a laugh this morning. But, all in all, he's really doing pretty darn good considering his back is broken. He continues to inspire me with his courage and humor.
We were able to come home from the hospital last Thursday afternoon, and have settled into a routine of sorts."I'm much too young to be this old" is what B said with a laugh this morning. But, all in all, he's really doing pretty darn good considering his back is broken. He continues to inspire me with his courage and humor.
The various meds he's on now are doing their jobs, so he's not in too much pain, his appetite is better, he's not nauseous, and finally, ta~daaa, he's not dizzy anymore (thank goodness!).
The after effects of the last chemo cycle have subsided and if his back wasn't broken, I think he'd be out and about by now. (probably finding his way into a guitar shop).
So, for now, we hope that with each day, he will continue to improve, so he will be ready for round 4 of chemo in a few weeks.
While I'm updating this morning, I'd like to add a few 'shout outs' to some of the folks who've been helping us along the way.
This list is by no means complete, so many have done so much, but this is what my sleep deprived little brain remembers at the moment.
- Jamie, our buddy boy, for the countless hours of entertaining company (at home and in the hospital) and for just being there and being you. We love you.
- Lila, for your perfectly timed ecards and emails.
- John and Donna, for taking care of our Annie Bo, multiple times on a moment's notice.
- Dave and Nan, for dinner and helping us get settled in after coming home from the hospital.
- Bob and Julia, for all the neat toys you've provided, like walkers, wheelchairs and such.
- B's brother Jeff, for all the Friday night dinners and movies.
- B's sister Kathy, for the angel pins for B's nurses and our cool 'Cancer Sucks' t-shirts.
- Rene 'A', for the cool music (CDs) you brought us. Good stuff!
- John, Jeanne and Bill, for the musical 'get well' serenade by phone.
- B's IBM co-workers, for all they do to help cover B's work, during the weeks he's not able to log on.
- All of you who have called or sent cards (he loves them!) and emails.
- And as always, our thanks to all of you who continue to send your love and support, thoughts, prayers, well wishes, and vibes for the greater good.
SEPTEMBER 15-Thursday-
B's doing better. He's had non-stop fluids via IV since he's been in the hospital, as well as a blood transfusion. He is getting stronger and the weakness and dizziness are subsiding. He should come home today if he's able to walk without dizziness.
Weakness (orthostatic hypotension), due to lack of eating and drinking, is probably what caused him to fall in the first place. So he has a new anti-nausea med and a new med, Megace, to help give him an appetite.
My task will be to make sure he continues to stay hydrated as well as taking in the proper nutrients.
His platelets are now at 47000, which is a whole lot better than 11000.
All in all, it could have been a lot worse, so we are counting our blessings.
His spirit and sense of humor are intact and I know he will be ok.
One thing I've noticed with this latest wrinkle, is I've had a minor personality change. If I think something isn't right, I'm sure speaking up. My interactions with various hospital staff have, at times, been testy. Not my normal nature, but some of the things we've encountered have brought out a definite assertive streak in me.
I think it started with an ER front desk nurse not letting me go back with B (after following the ambulance) in, what I thought was, a timely way. That set the tone.
I've eventually gotten along with everyone who's encountered this new me just fine. Jessica, that front desk nurse and I were getting along great the next day.
But I am B's advocate. If I think something's not right, they are definitely hearing about it.
Yesterday, though, was a funny example of my new-found testiness. One of the docs, while speaking to an intern, in front of B referred to B as elderly.
Before I knew it I heard myself saying "excuse me? elderly? I don't think so!"
This poor (young) doc became flustered, then apologized.
I think she learned a little lesson in bedside manner. Doesn't she know that age is a state of mind and that 60 is the new 40? Most times, we choose our age. But sometimes (temporarily), age chooses us. We all know that (the non-sick) B is a lot younger than his years, and he doesn't need to be hearing someone refer to him as elderly.
I'm just saying.
"I guess we're negotiating another bump in the road to recovery" is what Brian said after X-rays, a CT scan and an MRI confirmed that his back is broken.
He collapsed and fell at 8:30 Sunday night. I heard the crash, ran to him, and discovered he had fallen against the door, blocking my access to him. I called 911 and the paramedics were here in about 2 minutes. They got him up, assessed him, and checked his vitals, which were ok.
His complaint was his back hurt. They asked if he wanted to be transferred to the hospital, which he declined. Have I mentioned his stoic nature?
I called his brother Jeff and his sister Kathy who came over immediately. As we sat with him, it became evident that he needed to be seen, so at 11:00 pm I call 911 again, and asked if we could take them up on their previous offer of transfer to a hospital.
They arrived again within 2 minutes.
We got to UMC's ER at about 12:00 am Monday morning.
Sometime in the middle of the night, they confirmed he had indeed broken his back.
The technical term is a moderate burst fracture of the L1 vertebral body.
At this time, they do not think he'll need surgery. He's been fitted with a back brace (which he will be wearing for 8-12 weeks). If his fracture doesn't heal properly, surgery may be an option at a later date.
The good news is he didn't hit his head.
Lab results in the ER overnight Monday showed his platelet count to be 31000. That's quite low.
They told us if he'd hit his head when he fell, he would most likely have had a brain bleed.
All his counts are continuing to drop, and his platelets are currently 11000. He will probably be getting a blood transfusion later today.
He still cannot stand without being dizzy. They are trying to figure out what is going on, but we don't have any answers yet. Dehydration as the culprit is at the top of the list, but there's a myriad of other possibilities.
You know what I'm going to ask.
Ask the powers that be, to please help him. We need more prayers.
I'll update again as soon as I know more.
Thank you all.
SEPTEMBER 11-Sunday
At around 8:30pm, B had an orthostatic hypotension related fall and broke his back. We have since learned that orthostatic hypotension can be a side effect of Velcade, when coupled with dehydration.
SEPTEMBER 10-Saturday-
9am- Fever never got higher than 100°. And it broke in the middle of the night.
He's sleeping now and hopefully with rest today, he will start to feel better too.
10pm- So far, no more fever, but he still feels just plain yukky.
I'm pushing him to drink fluids so he can get this junk flushed through and out of his system asap. Maybe, that will help make him feel better sooner. I sure hope so.
His brother Jeff and sister Kathy came over and spent the day with him today. They watched movies and made him a dinner his Mom used to make. His appetite is completely gone, nothing tastes good to him, so they tried to make him a comfort food from his childhood. He did eat a few bites.
It was nice having them here today. He enjoyed it.
SEPTEMBER 9-Friday
Day 4 (3rd round of chemo)
Day 4 of chemo has a bad reputation. And it's living up to it.
An hour ago, his temp was a cool 97.9°.
But, now, as of 7:35 pm, his temp has suddenly climbed to an even 100°.
An official fever. The dreaded Day 4 fever.
And he feels terrible to boot. My heart is breaking seeing him so darn sick.
It will be a long night of working to bring it down and keep it down, to try to stay out of the ER.
100.5° is the magic number that requires attention (for immune suppressed people) and we are a mere ½° away from that.
I sure wish we had an answer as to why this is happening on day 4 of each round.
In the meantime, an extra dose of those positive vibes and prayers sent B's way will sure be appreciated.
I'll update as soon as he's feeling better. Here's hoping that's sooner, not later.
SEPTEMBER 7-8-Wednesday,Thursday-
Days 2 and 3, (3rd round of chemo)
Standard, uneventful chemo days. He still doesn't feel very good. He didn't get that Day 1 feel-good 'boost' this time like he's done with Day 1 of Rounds 1 and 2.
He did get the feel-good meds, he just didn't feel the boost.
This is probably 'cause the chemo drugs are building up in his system now.
And then there's the chronic infection he's been fighting for months, so he's feeling not so good this round.
It sure is a good thing he got a good PET scan report. Hopefully that will make tolerating these yukky days a bit easier knowing at least that the chemo's producing results.
Ok, so I'm nervous about tomorrow. Day 4 has gotten a very bad reputation in Rounds 1 & 2.
We need to stay out of the ER this weekend, so keep sending those positive thoughts, prayers and warm fuzzies that B doesn't get the dreaded Day 4 fever.
Ah...maybe... cool fuzzies would be better for Day 4 instead.
I'll keep you posted.
SEPTEMBER 6-Tuesday-
Day 1 (3rd round of Chemo)
Wow! What a lo-ooonnn-ng weekend! Not knowing the results of the PET scan and the fact that B was feeling funky, made these last 4 days seem like 2 weeks.
But (insert fanfare here) the results were great!
We arrived at the AZ Cancer Center this morning really tired (I think we slept 2 winks last night) and nervous. But, the news was good all around.
Good white count. Good platelets. Good labs.
Good PET scan!!!
Here's the rundown. The lung mass appears to have shrunk some, but the most important finding was regarding the metabolic activity that a PET scan measures.
It has been reduced by half!!
CT scans and X-Ray images of B's lung will always have confusing results. There's a lot of scar tissue, the lung is in a permanently semi-collapsed state and of course, there's the 'petrified wood' pleura that Doc Daniel encountered in his June 10th biopsy attempt. It makes discerning current tumor from old news difficult with these old fashioned types of imaging tests.
So, Doc Miller said he wanted to use PET scans to measure the chemo's progress.
A 50% reduction in metabolic activity compared with the PET scan taken June 28th is a really good result!
Heck, it's a great result!
So, it looks like the Corkillians, armed with this VCR chemo protocol (and along with all of your prayers and positive energy), are doing a number on those Lymphomians.
Whew.
I'll probably add more details later, but I wanted to get this posted.
Thanks again, for all of your support. It's been wonderful.
SEPTEMBER 4-Sunday-
B just looks miserable. When I ask him to describe what he's feeling, to determine if there's something we need to act on sooner than later, he says he feels flu-sey. He aches all over, has zero appetite, and is weak. I have to pry this info out of him, as he doesn't complain at all.
He tried to pretend he was ok today, so we could go to a concert in Phoenix, but he simply couldn't hide it.
Theoretically, this should be a good week for him with regards to the chemo side effects, but, eh, that's not the case. Darn chemo.
His sister Kathy bought some of the family tee-shirts the other day, with the phrase Cancer Sucks on the front of them. Yep, that pretty much sums it up. Cancer sucks.
SEPTEMBER 2-Friday-
Well, UMC did call, my heart did jump when I saw it on our caller ID, but it was just a robo appointment reminder call. So, no results 'til Tuesday. We will do our best to put the PET scan wondering out of our heads for the weekend.
Brian is feeling a bit better. The new med may be working, but mostly, I think he's distracted by the new toy that arrived for him today.
Oh, and today is our son Chip's 38th birthday. Happy birthday son! We hope the birthday fairies brought a few new toys to you too.
Boys and their toys!
SEPTEMBER 1-Thursday-
B started feeling a bit yukky again on Tuesday. So, he's on a new antibiotic. At least, so far, this one hasn't made him sick to his stomach like the last med.
This morning, he had his PET scan , the one that will tell us if the chemo is working. I figure we'll hear the results Tuesday because of the holiday, but they could call tomorrow. I'm sure if we see that call coming in, our heart rates will jump. We are really nervous.
For the most part, we do pretty well not dwelling on the 'what ifs'. We try to stay positive and 'in the moment', dealing with stuff as it presents. We enjoy the good times and deal with the tough times, and try not to get too far ahead of ourselves.
We learned to do this the last time he had Lymphoma.
It actually proved to be a good way to approach life in general.
That being said, we are both quite aware how important these test results will be, so I know it'll be a weird weekend of waiting and wondering,
with some (we are human) worrying thrown in there too.
Keep sending those prayers.
I am happy to report that B didn't have any issues with this PET scan like he did with the scan on June 28th. It wasn't unbearably uncomfortable for him this time. In fact, he said it was a bit boring.
Yay. We'll take that.
AUGUST 28-Sunday-
I wasn't going to post again so soon, but I love writing that HE STILL FEELS GOOD!! (insert the James Brown shuffle-slide here)
Yep, he's had almost a whole week of feeling good. The weakness persists, but I think that will diminish as he's able to get out and about more. Oh, and he's been playing guitar, rebuilding calluses lost these last few months. It's been a good week. Yep.
I started posting this journal on August 21st, one week ago. In that week, over 150 of you have dropped in to see how he's doing. Wow. You are all great. Thanks.
AUGUST 24-Wednesday-
B is still feeling pretty darn good. He finished the last antibiotic (Metronidale) yesterday (woohoo!!), and even went to work!
Our next milestone, will be a PET scan right before Round 3 of Chemo starts (in early September). We need that to show that the VCR protocol is doing it's job, reducing the lung mass.
I probably won't update again 'til then unless something unexpected happens. Think, no news is good news for a while, and picture B having a whole bunch more good days in a row. (insert happy face here)
And please keep those thoughts and prayers coming for a good PET scan result.
Oh, one more thing.... the response we've gotten from all of you about this journal has been wonderful! Thanks for letting us know you like it. I've forwarded all your emails to B, and have shown him all your Facebook comments as well.
He's tickled and humbled by all the love you're showing.
(insert another happy face here)
AUGUST 22-Monday-
B and I just did a happy dance, celebrating his taking the last Avalox pill!
He's on so many pills now (11 daily), you'd think finishing up one med wouldn't be a big deal. But this pill was a bugger.
Most of his regular pills are in a Daily Pill-Minder box, but not the antibiotics.
So B made a schedule of all the antibiotic pill times, with an area to check off each dose. This really helps to not miss a dose.
On the Metronidale 14 day schedule (the nastiest pill of them all!), he set achievement goals, which simply made me smile when I saw what he'd written.
Next to Day 7- DO it!, next to Day 9- Soldier!, Day 12- Cowboy!, Day13- Hero!,
and finally, next to Day 14- Pill God!
Today was Day 13, but we all know, he's already our hero.
Oh, and he's feeling much better today. Yippee!
AUGUST 21-Sunday-
B's still weak...and very tired. Hopefully, it can be attributed to the nadir period and his low blood counts. But for the most part, he says he feels good. At least not worse. He's playing a lot of X-Box, watching movies and napping. And putting up with my nagging him to Drink More Water! It's my job.
He's almost done with 2 of the antibiotics he's been on. He can't wait to finish these nasty meds. They make most food taste like metallic earwax (whatever that is), as well as making him really queasy.
I wonder if it's these antibiotics or is it the chemo? He's on so many drugs, the criss-crossing of side effects is making the culprit hard to pinpoint. But judging by when he started feeling queasy, he thinks finishing up these two meds will make a big difference. Here's hoping.
Metallic Earwax. Now there's a name for a band.
AUGUST 19-Friday-
No call from the AZ Cancer Center regarding the internal bleeding test. No news is good news? Hope they didn't forget to call. Here we go into another weekend period, hoping he won't need the ER. Fingers crossed. He's still tired and weak. Keep sending your prayers. AUGUST 18-Thursday-
B had a tough week. He's a bit better today, but the two new antibiotics have made him feel just plain yukky. He is also tired and weak.
He went in today for labs to check his blood levels. They are low. Low whites (3000) and low platelets. But, it was decided to still hold off on the Nuelasta shot for now. This is the nadir period and low counts are to be expected.
This was the first time he went to the AZ Cancer Center without me, and sure enough, he almost passed out in the parking lot. He is very weak, but didn't let on just how weak he was (have I mentioned his stoic nature?). I thought he was ok to go there alone. I actually thought it might be good for him to do this by himself. He even threw his golf clubs in the trunk, thinking he'd go hit balls at the Orange Grove driving range when he was done with the labs. Ah, that didn't happen. There is a possibility he may be bleeding somewhere in his digestive track. Or throwing clots, whatever that means. They did a test to check on that and will let us know tomorrow.
AUGUST 11-Thursday-
Day 4 (2nd round of Chemo)
Started this day a bit wary. Last month, on day 4, B got the fever that sent us to the ER and hospital for 5 days. It was decided to not give the Nuelasta shot this time. (He'll have labs next week to see if he needs it).
Anyway, that did not matter, as he got another fever while he was still being infused! Really? What is it with day 4?
We were sent home with instructions to control the fever, and NOT go to the ER unless his fever got ridiculously high. The theory was maybe the fever was being caused by tumor cells dying and would go away by morning, that all would be well. So much for that theory. He ran a fever all night and it took nonstop efforts to keep it below 101.5. (This is considered high for a cancer/chemo patient). We were sure happy to see the sun come up and off we went to the AZ Cancer Center to hopefully figure out what was wrong. Tentative diagnosis: pre-pneumonia. Or maybe a sinus infection. Or maybe the C-diff. So, we went upstairs to the infusion pods for some more IV antibiotics. He's on 4 separate antibiotics now. As the doc says, there's lots of bugs out there.
AUGUST 10-Wednesday-
Day 3 (2nd round of Chemo) Another 'B feels good' day! Three days in a row! We even went to the movies with Jamie and our friends John and Donna. We saw Cowboys and Aliens. It was fun, and really nice to get out. John and Donna have been wonderful, taking care of our Annie at a moments notice whenever B's in the hospital.
AUGUST 9-Tuesday-
Day 2 (2nd round of Chemo)
The feel good meds in his chemo cocktail yesterday are still working. He is feeling really good today. I mean, really good. Yippee! He needs these good days. So far, the bad days seem to have outnumbered the good ones. They have finally diagnosed his gastric disorder. C-diff. Probably from the hospital stay last month or the antibiotics he was given at that time.
AUGUST 8-Monday-
Day 1 (2nd round of Chemo)
Ok, here goes round two. B still wasn't feeling good this morning, but Day 1 has a few extras in the pre-medications drip. I think one of them is a feel good drug because by the end of the day, he was feeling pretty darn good. Also, since he didn't have an allergic reaction last month to the Rituximad, they were able to infuse it faster, cutting 90 minutes off the total treatment time. It only took 5 hours. He also once again got the 10 second Velcade push. It's great to see him feeling good.
JULY 25 through AUGUST 8-
B's been mostly sick this whole time, with few good days. I'm worried he won't have the stamina to endure round 2.
JULY 25-Monday-
Dr.Miller follow up regarding the hospital stay. B's been sick intestinally since he left the hospital. Making him quite uncomfortable.
JULY 19-Tuesday-
Released from the hospital today after 4 days of IV antibiotics. No idea what caused the fever or the high white counts. All blood work cultures were negative for infection. Could have been the Nuelasta shot he got Thursday to build his white count up, but that's iffy. In theory, Nuelasta shouldn't have reacted so quickly. It's more of a slow blood builder, doing it's job over the course of a month.
JULY 15-Friday-
3:30am this morning we went to UMC's emergency room. Brian had a fever of 102. His white blood count was 19,000 (normal is around 6,000). We spent 15 hours in the ER waiting for a room. The whole hospital's computer system was down all day and everything was being done the slow, hand written old fashioned way. We got a room on the cancer floor (3NW) at 9pm and B started feeling better right away. It also helped they gave him a dose of morphine for the severe headache he had. The hospital was very cognizant of his immune system vulnerability so all the time spent in the ER was in a small isolated room. B on a short, hard bed, and me, in a straight back metal chair (amazingly, I fell asleep sitting up several times). It was a very long day.
JULY 14-Thursday-
Day 4 (First round of Chemo)
Today he got the Cladribine and the Velcade (Bortezomib). He also got a Nuelasta injection. Another relatively short day, 4.5 hours in all. Afterward we went to lunch with B's sister Kathy. Later this afternoon, B started feeling 'flusey'... aches and pains all over, just plain yukky. He began to run a fever in the evening. Our post chemo instructions stressed that any fever greater than 100.5 had to be addressed by a doctor. Of course, it was after hours (AZ Cancer Center closed) when the fever hit 100.5, so we called the special UMC oncology # we'd been given. Doc said to go to ER.
B didn't want to go. Thought the fever would go away on it's own. Several hours later, when it hit 102, I convinced him we had to go to the ER. By mid afternoon Friday, he was experiencing tachycardia and high blood pressure, along with an intense headache. He told me later that while laying there, semi delirious, he had an uh-oh thought that maybe we had waited too long to come in. Thankfully, those conditions went away as his fever and pain subsided.
I was a little worried about him being in close contact with sick people in the ER waiting room, but UMC was great about getting him right into an ER room and making sure everyone who came in contact with him wore a mask. I was impressed.
Day 2 (2nd round of Chemo)
The feel good meds in his chemo cocktail yesterday are still working. He is feeling really good today. I mean, really good. Yippee! He needs these good days. So far, the bad days seem to have outnumbered the good ones. They have finally diagnosed his gastric disorder. C-diff. Probably from the hospital stay last month or the antibiotics he was given at that time.
AUGUST 8-Monday-
Day 1 (2nd round of Chemo)
Ok, here goes round two. B still wasn't feeling good this morning, but Day 1 has a few extras in the pre-medications drip. I think one of them is a feel good drug because by the end of the day, he was feeling pretty darn good. Also, since he didn't have an allergic reaction last month to the Rituximad, they were able to infuse it faster, cutting 90 minutes off the total treatment time. It only took 5 hours. He also once again got the 10 second Velcade push. It's great to see him feeling good.
JULY 25 through AUGUST 8-
B's been mostly sick this whole time, with few good days. I'm worried he won't have the stamina to endure round 2.
JULY 25-Monday-
Dr.Miller follow up regarding the hospital stay. B's been sick intestinally since he left the hospital. Making him quite uncomfortable.
JULY 19-Tuesday-
Released from the hospital today after 4 days of IV antibiotics. No idea what caused the fever or the high white counts. All blood work cultures were negative for infection. Could have been the Nuelasta shot he got Thursday to build his white count up, but that's iffy. In theory, Nuelasta shouldn't have reacted so quickly. It's more of a slow blood builder, doing it's job over the course of a month.
JULY 15-Friday-
3:30am this morning we went to UMC's emergency room. Brian had a fever of 102. His white blood count was 19,000 (normal is around 6,000). We spent 15 hours in the ER waiting for a room. The whole hospital's computer system was down all day and everything was being done the slow, hand written old fashioned way. We got a room on the cancer floor (3NW) at 9pm and B started feeling better right away. It also helped they gave him a dose of morphine for the severe headache he had. The hospital was very cognizant of his immune system vulnerability so all the time spent in the ER was in a small isolated room. B on a short, hard bed, and me, in a straight back metal chair (amazingly, I fell asleep sitting up several times). It was a very long day.
JULY 14-Thursday-
Day 4 (First round of Chemo)
Today he got the Cladribine and the Velcade (Bortezomib). He also got a Nuelasta injection. Another relatively short day, 4.5 hours in all. Afterward we went to lunch with B's sister Kathy. Later this afternoon, B started feeling 'flusey'... aches and pains all over, just plain yukky. He began to run a fever in the evening. Our post chemo instructions stressed that any fever greater than 100.5 had to be addressed by a doctor. Of course, it was after hours (AZ Cancer Center closed) when the fever hit 100.5, so we called the special UMC oncology # we'd been given. Doc said to go to ER.
B didn't want to go. Thought the fever would go away on it's own. Several hours later, when it hit 102, I convinced him we had to go to the ER. By mid afternoon Friday, he was experiencing tachycardia and high blood pressure, along with an intense headache. He told me later that while laying there, semi delirious, he had an uh-oh thought that maybe we had waited too long to come in. Thankfully, those conditions went away as his fever and pain subsided.
I was a little worried about him being in close contact with sick people in the ER waiting room, but UMC was great about getting him right into an ER room and making sure everyone who came in contact with him wore a mask. I was impressed.
JULY 13-Wednesday-
Day 3 (First round of Chemo)A repeat of yesterday. Just the pre-chemo cocktails (30 minute drip, 30 minute wait) and the Cladribine today. Another 4 hour day. He's still feeling pretty darn good. Hope this will be the trend throughout this 6 month process. We know that the chemo effects are cumulative, and that as time goes on, he won't feel as well, but it's nice he feels good right now.
JULY 12-Tuesday-
Day 2 (First round of Chemo)
We slept great last night! Yippee! Today B received the chemo drug, Cladribine . No Rituximad today. That's only given on day one. Cladribine only takes 2 hours to infuse, so today was a real short day, about 4 hours total. Much better than yesterday's almost 10 hours. He's feeling great. No signs of adverse reactions.
JULY 11-Monday-
Day 1 (First round of Chemo)
Results of the bone marrow biopsy show no Lymphoma in his marrow! But, it did show that B's bone marrow is 'weak', so they have decided to only give him 4 days of chemo, not 5. So the cycle will be 4 days on, 24 off, then start again.Geez. He's been told he has weak bone marrow, a wimpy pulse and scaredy-cat veins. He's seeing a trend here and starting to get a complex about it. But, I told him, you're not weak, wimpy or a scaredy-cat. Your the bravest guy I know. I mean, he signed all those scary papers didn't he?
B and I didn't sleep a wink last night. We were very aware that he could have a potentially fatal reaction to one of the drugs they will be using to treat the Lymphoma. Rituximad is a monoclonal antibody (MAb). A MAb is similar to a guided missile in that it homes in on a target (an antigen) on the Lymphoma cell and destroys the cell. This drug is produced in mice. Some people have severe reactions to this drug because of the cross species factor.
The first time a person is given this drug, it is given in tiny amounts, over a long period of time, with the patient being monitored closely for any signs of an adverse reaction. Today it took 6.5 hours to infuse B with Rituximad. He also received Cladribine (2 hours) and Velcade (a 10 second push) today.
He did fine, and by the time we went home, he was feeling great. Probably a combination of actually surviving the day, and the 'feel good' stuff they put in the pre-chemo cocktail. Whatever it was, he is feeling good and in high spirits. And he was brave, so very brave. Weak? Wimpy? A scaredy-cat? I think not!
JUNE 28-Tuesday-
B had his baseline PET scan this morning and this time it was very uncomfortable for him. At the doctors request, we went to a different radiology site, University Medical Imaging. (UMI has a direct link to the UMC AZ Cancer Center).
B had a very difficult time at this new place. The PET done previously at Radiology Limited was much easier for him. This time, he was miserable and sick when he came out of the imaging room. The tech at UMI had strapped him down and bound him tightly in blankets, things that Rad Ltd didn't do. He felt unbearably hot and claustrophobic. He has to remember to tell the techs at UMI next time... 'DON'T DO THAT!
Oh, and he had to drink a bunch of gunk at UMI that he didn't have to at Rad Ltd. Not sure why. Same test. We'll be asking some questions before the next one.
JUNE 27-Monday-
B got the stitches out from VAT surgery. He also had a bone marrow biopsy today (no results yet), and some more lab work done.
B was disappointed the lab couldn't use his shiny new port-a-cath for their blood draw. Seems there's a stitch right over the access point on the port, as well as surgical tape that's not supposed to be removed for 10 days. (Could this have been the brand new young UMC doc's first port installation? I mean, someone has to be first, right?) Anyway, the lab tech got the blood draw ok the old fashioned way.
B's what they call a very hard draw. His veins try to wiggle away from needles. It usually takes multiple painful tries (which is why he got the port). A very smart nurse at UMC came up with the idea of fooling the vein, using a pediatric needle to sneak up on the vein. That needle's so small the vein doesn't recognize it for what it is, and doesn't try to run away.
The newest (baseline) PET scan will be tomorrow, then he has 13 days off 'til we start the first round of chemo (July 11th through 15th). That's a week later than we thought he'd start because of the July 4th holiday falling on a Monday. He'll do two 28 day cycles of treatment, then they'll get another PET scan to see if it's working. We're both kind of glad to get a little breather before the chemo starts as these last few weeks have been quite hard on him. This will give him a chance to gain some strength... keep the prayers coming.
Oh, and Doc Miller filled out paperwork to get Brian a reprieve from his jury duties this year.
JUNE 25-Saturday-
You all know B had a lung biopsy, VAT surgery, on June 10th. He was in the hospital for 4 days. It was a difficult surgery, as the doc encountered obstacles and had to go to plan B (makes sense) during the surgery, requiring extra incisions. The doc described B's lung as being like petrified wood, making plan A impossible. So now, B's got about 5 incisions on his left side, on the rib area .
The docs say the reason he's been in so much pain is that our rib area is our 'tickle' spot and one of the most sensitive areas on our bodies. I have to say, B snapped back quicker from his bypass surgery than he's done with this one, but I'm happy to report, he's finally doing much better on his left side.
He did however have surgery again, yesterday, this time on his right side, to install a port-a-cath, so now he's favoring that side too. We are teasing him that he looks like a T-Rex (calling him B-Rex) , with his elbows against his side and his tiny little dinosaur arms sticking out to grab stuff. It's really cute and he's being cool about our poking a bit of fun.
B had his baseline PET scan this morning and this time it was very uncomfortable for him. At the doctors request, we went to a different radiology site, University Medical Imaging. (UMI has a direct link to the UMC AZ Cancer Center).
B had a very difficult time at this new place. The PET done previously at Radiology Limited was much easier for him. This time, he was miserable and sick when he came out of the imaging room. The tech at UMI had strapped him down and bound him tightly in blankets, things that Rad Ltd didn't do. He felt unbearably hot and claustrophobic. He has to remember to tell the techs at UMI next time... 'DON'T DO THAT!
Oh, and he had to drink a bunch of gunk at UMI that he didn't have to at Rad Ltd. Not sure why. Same test. We'll be asking some questions before the next one.
JUNE 27-Monday-
B got the stitches out from VAT surgery. He also had a bone marrow biopsy today (no results yet), and some more lab work done.
B was disappointed the lab couldn't use his shiny new port-a-cath for their blood draw. Seems there's a stitch right over the access point on the port, as well as surgical tape that's not supposed to be removed for 10 days. (Could this have been the brand new young UMC doc's first port installation? I mean, someone has to be first, right?) Anyway, the lab tech got the blood draw ok the old fashioned way.
B's what they call a very hard draw. His veins try to wiggle away from needles. It usually takes multiple painful tries (which is why he got the port). A very smart nurse at UMC came up with the idea of fooling the vein, using a pediatric needle to sneak up on the vein. That needle's so small the vein doesn't recognize it for what it is, and doesn't try to run away.
The newest (baseline) PET scan will be tomorrow, then he has 13 days off 'til we start the first round of chemo (July 11th through 15th). That's a week later than we thought he'd start because of the July 4th holiday falling on a Monday. He'll do two 28 day cycles of treatment, then they'll get another PET scan to see if it's working. We're both kind of glad to get a little breather before the chemo starts as these last few weeks have been quite hard on him. This will give him a chance to gain some strength... keep the prayers coming.
Oh, and Doc Miller filled out paperwork to get Brian a reprieve from his jury duties this year.
JUNE 25-Saturday-
You all know B had a lung biopsy, VAT surgery, on June 10th. He was in the hospital for 4 days. It was a difficult surgery, as the doc encountered obstacles and had to go to plan B (makes sense) during the surgery, requiring extra incisions. The doc described B's lung as being like petrified wood, making plan A impossible. So now, B's got about 5 incisions on his left side, on the rib area .
The docs say the reason he's been in so much pain is that our rib area is our 'tickle' spot and one of the most sensitive areas on our bodies. I have to say, B snapped back quicker from his bypass surgery than he's done with this one, but I'm happy to report, he's finally doing much better on his left side.
He did however have surgery again, yesterday, this time on his right side, to install a port-a-cath, so now he's favoring that side too. We are teasing him that he looks like a T-Rex (calling him B-Rex) , with his elbows against his side and his tiny little dinosaur arms sticking out to grab stuff. It's really cute and he's being cool about our poking a bit of fun.
JUNE 24-Friday-
B had a port-a-cath installed today at UMC. It was outpatient surgery. He's doing ok. Just groggy from the anesthesia. The chemo and most lab work will be done through this port. The doctor looked like he was 17 years old (although I'm sure he was at least 20). It is a teaching hospital and from what I understand, a new bunch of med students just began.
JUNE 22-Wednesday-
Saw Dr. Miller today to go over the results of the VAT surgery. It's official. Further pathology on the tissue samples show that B's Non-Hodgkins Lyphoma has returned. Once again, it's MALT.
Doc Miller was a bit upset it took so long to get this diagnosis confirmed as we've lost 3 months of treatment doing the two biopsies to confirm what he already suspected. Anyway, B will start chemo next week. He's been asked to participate in a VCR Clinical Study. A chemo cocktail of Velcade (Bortezomib), Cladribine, and Rituximad .
They will administer these chemo drugs through his shiny new port-o-cath, for 6 months, in 28 day cycles, with 5 days of getting the infusions, and 23 days of rest. We will be going to the Arizona Cancer Center on the infusion days where it will take from 4-8 hours to deliver the drugs via IV.
Today he was also given the VCR Clinical Study paperwork to review over the weekend. The side effects that could occur for the VCR drugs he'll be taking run the gamut of simple nausea and fatigue, to a sudden fatal allergic reaction or perhaps, all his skin will fall off. Really? (And he has to sign a paper Monday saying he's ok with these 5 pages of risks) I'm serious. Whatever. He's so brave, I'm blown away. I, on the other hand, am terrified.
Prognosis is good if he responds to the drugs. (Especially if the drugs don't kill him). The docs feel very optimistic he will respond well to the treatments, and he will be in remission again by Christmas.
On the bright side, B probably won't lose all his hair this time, and the doc promises if the Lymphoma comes back again in another 11 years, they will have the chocolate pill delivery system that B's requested by then.
Our spirits are good, and for the most part, we are ok.
B's sense of humor is intact....when we got home today after hearing of the 6 months of chemo, he said "shucks, I was hoping the treatment plan was going to be cheeseburgers, chocolate and foot rubs".
Oh, and B got two separate jury summons today. Pima County Court and District Court. Isn't he lucky.
JUNE 13-Monday-
Just got home from the hospital. Brian had VAT surgery Friday to diagnose a large left lung mass. Result is he has Lymphoma again, same lung as last time. Fortunately his right lung is still great. We'll see the oncologist next week to plan a course of action. VAT surgery is very painful and he had a few really tough days, but he's on the mend now. Pathology is typing the Lymphoma now and if it's the same MALT type he had before, they have new meds now that can work quite well. I guess we're hoping it's MALT Lymphoma. His spirits are good and we are optimistic.
JUNE 10-Friday-
2:00 pm- VAT surgery with Dr. Jonathan Daniel at University Medical Center.
JUNE 8-Wednesday-
New time and date for the surgery. This Friday, the 10th at 2:00 pm. Thanks for the love, hugs, thoughts and prayers. Reason given for the bump was the surgeon had a critically ill patient who needed emergency surgery.
JUNE 7- Tuesday-
The hospital just called. Brian's surgery has been postponed. The surgeon is unavailable tomorrow. We do not have any other details tonight. I'll keep you posted when we get a new date. Thanks for all your thoughts and prayers.
JUNE 3- Friday-
B's last gig at McMahons before he goes on hiatus from Still Cruisin' to fight the Non-Hodgkins Lymphoma. I'm sure going to miss the live music (more lead guitar!) and all our music loving friends. Looking forward to the day when B can get onstage again and wow us with his sweet singing and playing.
MAY 23-Monday-
MRI appears negative for cancer in B's shoulder. Whew! I was really nervous about this, 'cause it would have meant the cancer may have begun to spread outside the lung. The MRI shows a perfectly normal shoulder. Doc Butler's new theory is B has arthritis in that shoulder. Not frozen. We'll see. B's in A LOT of pain in this shoulder and is losing more and more mobility in it everyday. Does arthritis progress this rapidly? We'll see.
MAY 20-Friday-
B had an MRI on his shoulder today. It had also lit up on the PET scan. He's been undergoing physical therapy for what Dr. Butler thinks may be a frozen shoulder. United Healthcare requires 6 weeks of physical therapy before it will authorize an MRI, unless there are other indications. I guess they will now waive that requirement based on the PET scan.
We relayed Dr. Daniels message to Doc Butler to stop the physical therapy and get an MRI ordered asap based on the PET scan results. I sure hope insurance requirements haven't caused any new issues.
MAY 12-Thursday-
We met with Dr. Jonathan Daniel today. Doc Miller had mentioned this new, young super surgeon practicing at UMC. It was discussed that if the bronchoscopy was negative, Dr. Daniel should do VAT surgery to see if he could get some of the 'hot tissue'. Surgery on B's lung was/is considered a risk. The lung is simply compromised. Radiated tissue, scar tissue, a semi-collapsed state, all make surgery and healing an issue. It would take a 'super-surgeon' and thankfully Dr. Daniel is reputed to be one of those. Oh, and he looks about 19 years old.
He showed us the PET scan. And it was quite a sight! Picture storms on a Doppler radar. Everywhere that the PET scan uptake activity hit on looked like a vicious thunderstorm. Bright orange, reds and purple. And yep, the whole darn lung was brightly colored....and so was B's right shoulder. Doc Daniel asked B if he was having any issues with that shoulder. Issues? You bet. That shoulder's been killing him for months, and he's been in physical therapy for over a month to try to make it better. So, doc Daniel told us to notify B's shoulder doc, Dr. Thomas Butler, that B should stop physical therapy and get an MRI of that shoulder asap.
APRIL 25-Monday-
Still in the diagnosis phase of whatever's triggered the PET scan to 'hit'... so far, the first biopsy, the (bronchoscopy) revealed no cancer, Lymphoma, or fungus. We are disappointed with this result, because all it really means is the 'hot tissue' was missed. Which means another, more invasive biopsy will be in order soon. He's feeling OK, a bit tired as the left lung is only doing about 20% of what it should. Thankfully the right lung is great.
MARCH 30-Wednesday-
Bronchoscopy was done today. B's had these before, but that doesn't make it any easier. I feel so darn sad that he has to go through all this junk again. Why? Why him? This is the most decent, kind, loving, caring, smart, talented, amazing man I have ever known. It really just doesn't seem fair somehow.
MARCH 25-Friday-
Saw Doc Miller this morning to discuss the PET scan results. He thinks the Lymphoma has returned. But, before he can plan a course of treatment, he needs to verify that. So, he wants Doc Fiastro to do a bronchoscopy. I think we were all hoping it would just be the more scar tissue build-up scenario. Not so. The PET scan lit up big time on the left lung. Not only that, it's showing the mass is now throughout the entire lung! Top to bottom. Meaning it's growing fast. There's even been more growth since the Feb 9th CT scan. Yuk.
Kathy, Jamie and I didn't go in the room with B to see the doc, but we could sure tell it wasn't good news by B's posture when he came out. Looked like someone had put a 1000 lb. weight on him. We'd been trying to stay optimistic, holding out for good news, and I think we were all a little broadsided that the news wasn't good.
Despite this being such a heavy day, it was made a bit lighter at the lunch we had later at Denny's. We asked Jay (B's brother) to meet us there for lunch. He wasn't aware of what'd been going on, didn't know that B may be ill again. Now those of you who know Jay, you will love this. At the end of lunch, Kathy, Jamie, B and I all looked at each other and asked "well, are we going to tell him now?"... and Jay looked up from his sandwich and asked ..."tell me what?"... "what?" ...and then he looked around at all of us and said, somewhat loudly "awh hell, is this an intervention!?". It was so darn funny, we all went into hysterics. I think the other folks at Denny's thought we were all crazy. But it was exactly what we needed to lift our spirits. Too funny. Laughter really is the best medicine.
MARCH 21- Monday-
B had his PET scan today. He was really nervous, as the last time he had a PET scan (in June 2001) he became very claustrophobic. He did fine this time. We could hear the results by Friday. Nervous, but not morose. Just really nervous.
MARCH 16-Wednesday-
We have been in a waiting mode. United Healthcare didn't want to ok the PET scan and it took 3 weeks to get that approval. We should hear from Radiology Ltd scheduling today, then he'll get the scan sometime within the next week or so. Then he sees the oncologist to find out if the lymphoma's returned. Doc Fiastro's hoping what the CT scan is seeing is simply more scar tissue buildup, caused by infections within the mass, flaring, healing, then scarring.
JUNE 22-Wednesday-
Saw Dr. Miller today to go over the results of the VAT surgery. It's official. Further pathology on the tissue samples show that B's Non-Hodgkins Lyphoma has returned. Once again, it's MALT.
Doc Miller was a bit upset it took so long to get this diagnosis confirmed as we've lost 3 months of treatment doing the two biopsies to confirm what he already suspected. Anyway, B will start chemo next week. He's been asked to participate in a VCR Clinical Study. A chemo cocktail of Velcade (Bortezomib), Cladribine, and Rituximad .
They will administer these chemo drugs through his shiny new port-o-cath, for 6 months, in 28 day cycles, with 5 days of getting the infusions, and 23 days of rest. We will be going to the Arizona Cancer Center on the infusion days where it will take from 4-8 hours to deliver the drugs via IV.
Today he was also given the VCR Clinical Study paperwork to review over the weekend. The side effects that could occur for the VCR drugs he'll be taking run the gamut of simple nausea and fatigue, to a sudden fatal allergic reaction or perhaps, all his skin will fall off. Really? (And he has to sign a paper Monday saying he's ok with these 5 pages of risks) I'm serious. Whatever. He's so brave, I'm blown away. I, on the other hand, am terrified.
Prognosis is good if he responds to the drugs. (Especially if the drugs don't kill him). The docs feel very optimistic he will respond well to the treatments, and he will be in remission again by Christmas.
On the bright side, B probably won't lose all his hair this time, and the doc promises if the Lymphoma comes back again in another 11 years, they will have the chocolate pill delivery system that B's requested by then.
Our spirits are good, and for the most part, we are ok.
B's sense of humor is intact....when we got home today after hearing of the 6 months of chemo, he said "shucks, I was hoping the treatment plan was going to be cheeseburgers, chocolate and foot rubs".
Oh, and B got two separate jury summons today. Pima County Court and District Court. Isn't he lucky.
JUNE 13-Monday-
Just got home from the hospital. Brian had VAT surgery Friday to diagnose a large left lung mass. Result is he has Lymphoma again, same lung as last time. Fortunately his right lung is still great. We'll see the oncologist next week to plan a course of action. VAT surgery is very painful and he had a few really tough days, but he's on the mend now. Pathology is typing the Lymphoma now and if it's the same MALT type he had before, they have new meds now that can work quite well. I guess we're hoping it's MALT Lymphoma. His spirits are good and we are optimistic.
JUNE 10-Friday-
2:00 pm- VAT surgery with Dr. Jonathan Daniel at University Medical Center.
JUNE 8-Wednesday-
New time and date for the surgery. This Friday, the 10th at 2:00 pm. Thanks for the love, hugs, thoughts and prayers. Reason given for the bump was the surgeon had a critically ill patient who needed emergency surgery.
JUNE 7- Tuesday-
The hospital just called. Brian's surgery has been postponed. The surgeon is unavailable tomorrow. We do not have any other details tonight. I'll keep you posted when we get a new date. Thanks for all your thoughts and prayers.
JUNE 3- Friday-
B's last gig at McMahons before he goes on hiatus from Still Cruisin' to fight the Non-Hodgkins Lymphoma. I'm sure going to miss the live music (more lead guitar!) and all our music loving friends. Looking forward to the day when B can get onstage again and wow us with his sweet singing and playing.
MAY 23-Monday-
MRI appears negative for cancer in B's shoulder. Whew! I was really nervous about this, 'cause it would have meant the cancer may have begun to spread outside the lung. The MRI shows a perfectly normal shoulder. Doc Butler's new theory is B has arthritis in that shoulder. Not frozen. We'll see. B's in A LOT of pain in this shoulder and is losing more and more mobility in it everyday. Does arthritis progress this rapidly? We'll see.
MAY 20-Friday-
B had an MRI on his shoulder today. It had also lit up on the PET scan. He's been undergoing physical therapy for what Dr. Butler thinks may be a frozen shoulder. United Healthcare requires 6 weeks of physical therapy before it will authorize an MRI, unless there are other indications. I guess they will now waive that requirement based on the PET scan.
We relayed Dr. Daniels message to Doc Butler to stop the physical therapy and get an MRI ordered asap based on the PET scan results. I sure hope insurance requirements haven't caused any new issues.
MAY 12-Thursday-
We met with Dr. Jonathan Daniel today. Doc Miller had mentioned this new, young super surgeon practicing at UMC. It was discussed that if the bronchoscopy was negative, Dr. Daniel should do VAT surgery to see if he could get some of the 'hot tissue'. Surgery on B's lung was/is considered a risk. The lung is simply compromised. Radiated tissue, scar tissue, a semi-collapsed state, all make surgery and healing an issue. It would take a 'super-surgeon' and thankfully Dr. Daniel is reputed to be one of those. Oh, and he looks about 19 years old.
He showed us the PET scan. And it was quite a sight! Picture storms on a Doppler radar. Everywhere that the PET scan uptake activity hit on looked like a vicious thunderstorm. Bright orange, reds and purple. And yep, the whole darn lung was brightly colored....and so was B's right shoulder. Doc Daniel asked B if he was having any issues with that shoulder. Issues? You bet. That shoulder's been killing him for months, and he's been in physical therapy for over a month to try to make it better. So, doc Daniel told us to notify B's shoulder doc, Dr. Thomas Butler, that B should stop physical therapy and get an MRI of that shoulder asap.
APRIL 25-Monday-
Still in the diagnosis phase of whatever's triggered the PET scan to 'hit'... so far, the first biopsy, the (bronchoscopy) revealed no cancer, Lymphoma, or fungus. We are disappointed with this result, because all it really means is the 'hot tissue' was missed. Which means another, more invasive biopsy will be in order soon. He's feeling OK, a bit tired as the left lung is only doing about 20% of what it should. Thankfully the right lung is great.
MARCH 30-Wednesday-
Bronchoscopy was done today. B's had these before, but that doesn't make it any easier. I feel so darn sad that he has to go through all this junk again. Why? Why him? This is the most decent, kind, loving, caring, smart, talented, amazing man I have ever known. It really just doesn't seem fair somehow.
MARCH 25-Friday-
Saw Doc Miller this morning to discuss the PET scan results. He thinks the Lymphoma has returned. But, before he can plan a course of treatment, he needs to verify that. So, he wants Doc Fiastro to do a bronchoscopy. I think we were all hoping it would just be the more scar tissue build-up scenario. Not so. The PET scan lit up big time on the left lung. Not only that, it's showing the mass is now throughout the entire lung! Top to bottom. Meaning it's growing fast. There's even been more growth since the Feb 9th CT scan. Yuk.
Kathy, Jamie and I didn't go in the room with B to see the doc, but we could sure tell it wasn't good news by B's posture when he came out. Looked like someone had put a 1000 lb. weight on him. We'd been trying to stay optimistic, holding out for good news, and I think we were all a little broadsided that the news wasn't good.
Despite this being such a heavy day, it was made a bit lighter at the lunch we had later at Denny's. We asked Jay (B's brother) to meet us there for lunch. He wasn't aware of what'd been going on, didn't know that B may be ill again. Now those of you who know Jay, you will love this. At the end of lunch, Kathy, Jamie, B and I all looked at each other and asked "well, are we going to tell him now?"... and Jay looked up from his sandwich and asked ..."tell me what?"... "what?" ...and then he looked around at all of us and said, somewhat loudly "awh hell, is this an intervention!?". It was so darn funny, we all went into hysterics. I think the other folks at Denny's thought we were all crazy. But it was exactly what we needed to lift our spirits. Too funny. Laughter really is the best medicine.
MARCH 21- Monday-
B had his PET scan today. He was really nervous, as the last time he had a PET scan (in June 2001) he became very claustrophobic. He did fine this time. We could hear the results by Friday. Nervous, but not morose. Just really nervous.
MARCH 16-Wednesday-
We have been in a waiting mode. United Healthcare didn't want to ok the PET scan and it took 3 weeks to get that approval. We should hear from Radiology Ltd scheduling today, then he'll get the scan sometime within the next week or so. Then he sees the oncologist to find out if the lymphoma's returned. Doc Fiastro's hoping what the CT scan is seeing is simply more scar tissue buildup, caused by infections within the mass, flaring, healing, then scarring.
FEBRUARY 24-Thursday-
Doc Fiastro called and said the CT scan showed some definite changes in the size of the mass. He wants B to get a PET scan. He needs to get insurance approval and will call us with the appointment.FEBRUARY 9- CT scan
JANUARY 11- Routine X-ray shows some changes since last X-ray. Doc wants a CT scan done.
JANUARY 10, 2011- Routine check-up Dr. Fred Fiastro
2001- January 2011
Throughout this last decade, B had regular check-ups with both his oncologist, Dr. Thomas Miller at the AZ Cancer Center and with Dr. Fred Fiastro, a pulmonary specialist who's helped him manage the symptoms his post NHL damaged left lung has presented these last 10 years. A lung mass always shows up in any imaging done, but it had been attributed to scar tissue and the fact that lung is in a permanently semi-collapsed state. This mass has stayed somewhat stable in size all these years.
That started changing in Jan 2011. A routine let's see how it's doing X-ray with Doc Fiastro showed new growth. Doc F then ordered a CT scan. B had that done on Feb. 9th, 2011. Based on the CT scan results (it showed growth too), Doc Fiastro wanted a PET scan done. This new technology can really show cancer and would be crucial for determining if all this new growth was of a cancerous nature, or perhaps just new scar tissue, which is what the small changes throughout the years have been attributed to. This brings us to 2011. And this newest journey.
I want to thank all of you for all the kind and wonderful thoughts, prayers, and well wishes you've sent B since he's been diagnosed again. Keep 'em coming. We know he will be ok again, it'll just take some time.
B's FIRST EXPERIENCE WITH NON-HODGKINS LYMPHOMA - 1997-2000
He was first diagnosed with Non-Hodgkins Lymphoma in December of 1999. An X-ray taken in August 1997 showed an abnormality in the left lung.. For two years, the docs treated him for Aspergillus, mainly because the multiple bronchoscopies he had during that time showed no cancer. A fine needle aspiration of his lung finally identified his disease as NHL in December 1999.
Treatment began January 6th, 2000. He received 3 different chemo treatments over the next 6 months. First was CHOP (post treatment imaging showed no change in tumor size), so they tried ESHAP(?) (once again, no change in tumor size), and finally they tried an experimental chemo cocktail called ICE ( which did show some tumor change). All these chemo names are acronyms, based on the individual drugs in each combo. (ex: ICE contains Ifosfamide, Carboplarin and Etoposide.)
B finished up treatment with 6 weeks of radiation in early fall. By winter, the docs felt pretty good that he had gone into remission. A PET scan in June 2001 confirmed the remission.
At the time he went into remission, they told us the good news, bad news scenario with the type of Lymphoma (MALT) he had.
Good news: it doesn't like to metastasize, bad news: it almost always comes back. They said he might get 10-12 years remission.
Which brings us to now, 2011. It's back. He's had 11 years remission from the NHL, although during this time, he's also had quadruple by-pass heart surgery and vocal chord cancer. It's been quite a decade for him, but he's handled everything thrown at him with dignity, courage, and most of all, a wonderful spirit. He's been an inspiration to all who know him, never complaining, just facing each obstacle with determination and grace.
But then, that's him. Our superman.
To see B's Journey, Chapter Two (September 21st, 2012 through April 15th, 2013) please click here for Chapter Two.
I've had to divide the B's Journey into Three Chapters because of technical issues with Blogger.
9 comments:
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I've been showing B all your emails and Facebook comments, and will show him any from here as well.
Thanks, Jenna
Hi Jenna, and Hi Brian! Jenna, you don't know me but we've become Facebook 'Friends' since I responded to your request last week. I'm happy I did, because otherwise I wouldn't have had a chance to send my encouragement to your dad. Brian and I haven't been too good about staying in touch for oh, about 20+ years but he can tell you about our epic racquetball battles back at Fort Lowell park in the 70's. As I recall, he trounced me the very last time we played!
Anyway, Brian it sounds like you have been up against it lately, but what a blessing to have such a loving and talented daughter at your side. I'm gonna be sending you all the positive thoughts and prayers that I can until you are past this speedbump. Then I want a re-match! Hang in there buddy and let me know if there is anything I can do. Best to you all, Gary Love
OK, now I'm embarrased. Did I say daughter? Please forgive, that shows how out of touch I've been over the years!
Gary
Hi Gary...You made me chuckle with the 'daughter' reference...and I'm pretty sure it will put a smile on Brian's face too. I have heard about your raquetball days. He's quite fond of you. Thanks for stopping in to catch up on what's been going on. The journey's been tough so far, but we're trying to keep our eyes on the destination. Thanks for the ad on Facebook as well. Hopefully, when B's a bit better we can get out and catch you and The Coolers again.
Ok,Brian old pal.
Enough of this already. Time to lick this and get back to playing licks on the guitar.
Stay strong both of you.
Rob
Thank you so much for sharing Brian's journey. I had no idea you were both going through this again. I'm so glad Brian has you with him. Please greet him from me, and let him know we think of him often and allow only positive thoughts to circulate. My brother, Hal, just received his most recent test results after an arduous journey with colon cancer and all looks great--finally. I know the same will happen soon with Brian. Sending our love to both of you, Mara
WOOT!!! Great news, glad he is doing so much better. The pics of the New Year's event are fantastic; looks like you both enjoyed a well deserved evening with friends. Happy New Year to you both...may all your prayers be fulfilled in the coming year.
Leaving the lab results would be wonderful! I must check a kazillion times a day (thus a lot of "Visitor from Tucson" notices on here). Prayers and many thoughts a day for neutro's to make their debut (leave it to him to need something that sounds like it's from Star Wars ;/ ). Love to you both <3
I love you both so much... Praying for you like mad!
I keep reminiscing on memories with Gma J and Gpa B... <3 Dress up, music, gardening, arnold palmers, xbox/video games, annie-bo, laughter, hugs, smiles, warmth, happiness... I am so lucky to have two incredible, strong, caring, and loving grandparents. <3 I seriously miss you so much :')
-Emma
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