Here we are, in 2015, and thankfully B is still here with us. His journey continues.
So many of you care so much about B and want to keep up with the latest news.
B's Journey is a chronicle of his entire medical journey so far.
Chapter One (Jan 2011-Sept 2012) begins with his diagnosis of recurrent Non Hodgkins Lymphoma in early 2011. He developed therapy induced Myelodysplastic Syndrome, needing 3-4 transfusions a week (for almost 16 months) to simply stay alive.
In Chapter Two (Sept 2012-April 2013), we start to explore the possibility of a Bone Marrow Transplant to save his life. He has a MUD (Matched Unrelated Donor) Stem Cell Transplant on February 13th, 2013.
Chapter Three, below, continues to cover his life post transplant, April 2013-through present day.
He does have a few post transplant issues, such as Graft Vs Host Disease on the skin of his arms and face, as well as GVH in his mouth and eyes.
But his biggest obstacle continues to be the debilitating, painful neuropathy he developed in Sept 2011 from the NHL chemotherapy.
It took from him the feeling in his feet and hands, making walking difficult, and guitar playing almost impossible.
Supported by many of his musician friends, he's slowly making his 'wooden' fingers learn to play again, and is even playing again in several local bands.
Music, friends and family are his life. Music, friends and family are his medicine.
It's been quite a journey, as he adjusts to his new 'normal', but all things considered, most of the time he's doing pretty good.
Drop in at your convenience to catch up. Each of you can decide for yourself how much (or how little) you want to know.
NOTE: B's Journey is a sub-page of my Artblog (launched in 2008 before B became sick).
By default, the margins are shared by both the Artblog and B's Journey pages.
This is why you see my Artblog margins on both sides of this journal.
This bothers me, as it's not my intent to promote my Artblog here on B's Journey pages.
In fact, as B's caregiver, my Artblog has become almost static since 2011, as I've had very little time to paint these last 4 years.
The 'Pages' feature provided by my Artblog site, gave me an easy place to chronicle his journey for friends and family, especially when we lived away from home for months during transplant.
I'm sorry for the distractions, but my Artblog template simply doesn't allow me hide the margins.
Thanks for stopping in to see how B is doing in his courageous journey.
Welcome to Chapter 3.
If you'd like to go back to the beginning of B's Bone Marrow/Stem Cell Transplant process (Day Zero-Feb 13th, 2013), click here for Chapter Two.
So far, he seems to be recovering pretty darn well from his Bone Marrow/Stem Cell Transplant.
His Non-Hodgkins Lymphoma and Myelodysplastic Syndrome seem to be in remission. It will be a few years before we can say he's cured, but so far, so good.
We are so grateful for all the love and support everyone has given him throughout his journey these last few years. Thank you.
Most of these updates begin with lab results.
They are for my reference.
I know the lab results are gobbledegook to most of you, so just skip to the summaries to know the latest.
If a lab is severely out of whack, I'll go over it in the summary.
These 4 years of B's Journey has been filled with ups, and downs.
I continue to update here, because I know a few of you, family and friends, still check in from time to time to see how he's doing.
I also know a few of you, who now are facing difficult journeys of your own, have found inspiration through B as he keeps on keeping on, with tenacity, humor and spirit, through the ups and downs life has dealt him, as a Cancer and Stem Cell Transplant survivor.
This journal has also been incredibly helpful for me to keep track of all the vast and different issues that B's faced along the way and the outcomes of these issues.
As his caregiver, it's been helpful to be able to come here to reference the whens, hows and whats that post cancer and transplant life has presented when I need to.
I haven't touched too much on what it's been like to be a long term caregiver, but I may do that more in the future. A few of you have recently found yourselves in this role now and have told me I provide strength for you too. It's not easy to be sure, but we do what we do, with love and solidarity.
So, I continue, not just for us, but for all of you too.
Thanks for stopping in.
DECEMBER 10.2015- Thursday
Lab numbers: Labcorp (12/7)
Hemoglobin- 15.2 (increase) (normal-12.6-17.7)
Hematocrit- 46.2% (increase)(normal-37%-51%)
Hematocrit- 46.2% (increase)(normal-37%-51%)
Platelets- 255 (increase) (normal-155-379)
Neutrophils- 5.0 (increase) (normal-1.4-7.0)
White Blood Count- 7.4 (increase) (normal-3.4-10.8)
White Blood Count- 7.4 (increase) (normal-3.4-10.8)
BUN- 28 (increase) (normal 8-27) H
eGFR- 57 (increase) (normal above 59) L
Potassium- 4.1 (decrease) (normal 3.5-5.2)
Alkaline Phosphatase S- 147 (increase) (normal-39-117) H
Protein- 6.3 (increase) (normal- 6.0-8.5)
Albumin- 3.7 (unchanged) (normal- 3.6-4.8)
Today we went to Scottsdale to see Doc Scriber and the transplant team.
We haven't been up there in almost 3 months.
It was pretty routine, although I let them know that I am worried about B's loss of weight and the weakness he's been feeling.
I've been working hard at feeding him regular, high calorie meals as well as adding 2 nutritional drinks a day to his diet, but his weight still stays around 140-142.
Doc wants him doing 3 of those drinks a day until he gains some extra weight.
B's labs were all really good thankfully.
DECEMBER 9.2015- Wednesday
B had a regularly scheduled IViG treatment and t shot today at the eastside location of Az Oncology.
No issues.
DECEMBER 8.2015- Tuesday
B had his regularly scheduled Pentamidine treatment today.
Routine, with no issues.
DECEMBER 7.2015- Monday
Doc Hud again today.
Supposed to get another silver nitrate treatment on the top of the head sore, but Doc says the culture came back positive for staph again.
So he skipped the silver nitrate and put B on another 10 day regimen of antibiotics.
He also biopsied a suspicious growth on B's right upper forearm.
NOVEMBER 30.2015- Monday
Doc Hud again.
The sore on the top of B's head has regrown a large scab.
Since biopsy a few weeks ago revealed it's granulation tissue, Doc treated the sore with silver nitrate today.
This needs to be done once weekly until the sore improves.
He also cultured the area to rule out another staph infection.
NOVEMBER 17.2015- Tuesday
Post op with Doc Wright today to remove the ureter stent placed 10/17.
No issues with the procedure.
We were disappointed to find that X-rays revealed the kidney stone addressed with the sonar lithotripsy on 11/4 was not destroyed after all.
While it may have been broken up (?), it still remains in the same place.
So, at the end of all this kidney stone drama, 4 kidney stones remain.
1 in the right kidney, 3 in the left.
Bummer.
Hope they remain dormant for a while.
B needs a break.
NOVEMBER 12.2015- Thursday
Doc Hud today to take a look at the sore on the top of B's head that's still not healing.
Biopsy on 10/26 ruled out Squamous Cell cancer, instead finding that it's something called granulation tissue.
Usually treated with silver nitrate, Doc decided to leave it alone today.
NOVEMBER 11.2015- Wednesday
Lab numbers: Labcorp (11/9)
Hemoglobin- 14.0 (decrease) (normal-12.6-17.7)
Hematocrit- 43.8% (decrease)(normal-37%-51%)
Hematocrit- 43.8% (decrease)(normal-37%-51%)
Platelets- 179 (decrease) (normal-155-379)
Neutrophils- 4.3 (increase) (normal-1.4-7.0)
White Blood Count- 6.5 (increase) (normal-3.4-10.8)
White Blood Count- 6.5 (increase) (normal-3.4-10.8)
BUN- 24 (increase) (normal 8-27)
eGFR- 54 (increase) (normal above 59) L
Potassium- 4.4 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 120 (decrease) (normal-39-117) H
Protein- 5.9 (decrease) (normal- 6.0-8.5)
Albumin- 3.7 (decrease) (normal- 3.6-4.8)
Ferritin- 1439 (decrease) (normal- 30-400) H
T shot
Doc Chen visit with monthly IViG infusion.
Pretty routine.
NOVEMBER 5.2015- Thursday
B had his regularly scheduled Pentamidine treatment today.
No issues.
NOVEMBER 4.2015- Wednesday
Doc Wright's office scheduled B for a sonar version of Lithotripsy, which he had today.
Once again, out patient at TMC, but this time with a local anesthetic and a bit of conscious sedation.
No general anesthesia thankfully.
Sonar Lithotripsy is done from outside the body with targeted sound waves that attack the kidney stone.
And, it worked!
Stone #2 is now blasted.
The stent remains in place to allow the debris from this broken stone to pass easily.
The stent will be removed in yet another procedure in a few weeks.
B has really been through the wringer these last 3 weeks.
Looking forward to him having a break from all these procedures, but the thought of those 3 remaining stones lurking in his left kidney haunt us a bit right now.
We figure for now, if they aren't hurting, we should wait a bit and let him rebuild his strength before addressing them.
Maybe next year. (Which is really only 7 weeks away- where has this year gone?)
OCTOBER 28.2015- Wednesday
B had another go at Lithotripsy today.
This time, Doc Wright was able to blast the big stone, but unfortunately could not get to the second stone.
He left the stent in to allow any stone debris that's left pass more easily.
B had today's surgery as an outpatient.
He was under general anesthesia for 90 minutes and it made his recovery difficult.
He had a terrible headache and nausea post op that continued for several hours after we came home.
We were both relieved when he finally stabilized and started feeling better.
I was able to control his post op pain with oral meds.
OCTOBER 26.2015- Monday
Lab numbers: Labcorp (10/26)
Hemoglobin- 14.4 (increase) (normal-12.6-17.7)
Hematocrit- 45.1% (increase)(normal-37%-51%)
Hematocrit- 45.1% (increase)(normal-37%-51%)
Platelets- 214 (increase) (normal-155-379)
Neutrophils- 3.5 (decrease) (normal-1.4-7.0)
White Blood Count- 5.7 (decrease) (normal-3.4-10.8)
White Blood Count- 5.7 (decrease) (normal-3.4-10.8)
Creatinine- 1.39 (increase) (normal-0.76-1.27)H
BUN- 22 (unchanged) (normal 8-27)
eGFR- 53 (decrease) (normal above 59) L
eGFR- 53 (decrease) (normal above 59) L
Potassium- 4.1 (unchanged) (normal 3.5-5.2)
Alkaline Phosphatase S- 123 (increase) (normal-39-117) H
Protein- 6.6 (increase) (normal- 6.0-8.5)
Albumin- 4.1 (increase) (normal- 3.6-4.8)
Ferritin- 1627 (decrease) (normal- 30-400) H
Alkaline Phosphatase S- 123 (increase) (normal-39-117) H
Protein- 6.6 (increase) (normal- 6.0-8.5)
Albumin- 4.1 (increase) (normal- 3.6-4.8)
Ferritin- 1627 (decrease) (normal- 30-400) H
He looked at the Staph infection wounds and they look much better, but he thinks they still have staph. Another culture was done.
I also had him look at a strange scab on the top of B's head where he once had a (positive for squamous cell cancer) biopsy.
Hoping it's not more squamous cell cancer. Doc Hud did another biopsy to rule it out, but he thinks this may be something called granulation tissue.
Update: Top of the head is granulation tissue, not Squamous.
Staph remains so he's on a 10 day regime of antibiotics again.
OCTOBER 18.2015- Sunday
Brian finally started feeling better and we were able to go home this afternoon.
The stent/kidney stone remain uncomfortable, but the pain is tolerable.
Plan is to try Lithotripsy again in 10 days.
I guess during this time the stent will help the ureter to relax and the camera/laser probe should be able to reach the stone next time.
Poor B.
Another painful surgery coming up.
He's frustrated and exhausted by his body once again.
But, he says there's nothing to do but to do it, so he will do what he needs to as he needs to.
His tenacity really is amazing.
OCTOBER 17.2015- Saturday
B was scheduled for surgery this afternoon around 1pm.
Prior to surgery, we met Doc Wright, our urologist.
He showed us the newest CT scan as well as the one from 18 months ago.
And it seems the giant kidney stone has friends. He has another kidney stone in his right kidney and 3 kidney stones in his left.
The left side kidney stones are not causing symptoms (yet), but Doc Wright wants to try to address both right side stones today.
So on today's menu is- Lithotripsy with stent placement.
Lithotripsy is camera guided laser attack on the stone.
Unfortunately, today it was only partially successful.
Doc Wright was unable to advance the camera/laser probe through the ureter to the stone. So no stone blasting.
But, he was able to place the stent, which will help the kidney drain and keep the still intact giant stone from blocking the kidney again (like it was on Thursday's initial attack.)
Today's surgery took about 45 minutes, and was done under general anesthesia.
He had no ill effects from the anesthesia.
Plan was to go home this afternoon, but B's pain, post surgery, is once again off the charts.
We will spend another night here at the hospital until he's stable again pain wise.
OCTOBER 16.2015- Friday
Strangely, after last nights initial ER room pain med, B's pain has all but gone away and stayed away.
Theory is the stone had shifted to a less painful site, but pain or no pain, the stone has to be addressed.
Plan is to do Lithotripsy with stent placement. He's been NPO since last night, but as of 3pm, no one seemed to know when it would be done.
I finally got a bit upset and started asking what the heck is going on. Are we having surgery today or what? If not, feed him.
He's hungry. At home, we are in a constant, ongoing battle to keep him from losing weight.
He's been as thin as 138.
Now, he hasn't eaten since the night before and we still have no idea when he's scheduled for surgery or when he's allowed to eat. Ugh.
After another hour or so it was finally determined that his surgery is scheduled for tomorrow (10/17) morning.
So, he can eat.
We will spend at least another day here at the hospital.
OCTOBER 15.2015- Thursday
Brian had seen Doc Hud, his dermatologist, on Sept 14th.
He did a lot of biopsies, and a month later, a few of those wounds had not healed very well.
Today we saw Doc Hud's associate, Doc Bangart to have him take a look at one in particular that we have a suspicion might be staph infected.
B and I are getting pretty good at identifying the stuff.
Doc Bangart took a culture.
But that wasn't the big news of the day.
A few hours prior to this late afternoon appointment with Doc B, B had started to feel pain in his abdomen.
Pretty intense pain. Lower right side.
Appendicitis? Bowel blockage?
???
B mentioned the pain to Doc B who said he thought we should err on the side of caution and go to the ER.
We came home instead, but within an hour, decided to indeed go to TMC's ER.
B's pain was intense. A 10 out of 10.
We got to the ER around 5:30pm and it took the better apart of 5 hours to finally get B an ER room so he could have something for pain. Must have an ER room before an IV can be started to give pain meds.
My kind, soft spoken man was not so soft spoken by the time the 11th or so human encountered that night asked him in his 5th hour of 10 out of 10 pain, "So how are you doing sir?".
Thankfully, they were able to get an IV going quickly and finally get him some much needed pain relief.
In the hours preceding, while we were still in waiting room mode, they had called B back to get a CT scan to see what was going on.
He also had some labs.
The CT scan showed that this was another kidney stone attack.
I say another because, 18 months ago, he had another kidney stone attack that took us to the ER.
But this time, the stone was found to be too large to pass.
So, he's been admitted to the hospital and will get a urologist on board to see what's needed to be done.
Strangely, after that initial ER room pain med, B's pain has all but gone away and stayed away.
Theory is the stone had shifted to a less painful site, but pain or no pain, the stone has to be addressed.
Plan is to do Lithotripsy with stent placement on Saturday (10/17) morning.
Update 10/19: Culture results from Doc Bangart show B does have a Staph infection on his arm again.
He was on IV antibiotics while in the hospital and is on oral antibiotics at home to address this.
OCTOBER 12.2015- Monday
Lab numbers: Labcorp (10/12)
Hemoglobin- 13.1 (decrease) (normal-12.6-17.7)
Hematocrit- 41.5% (decrease)(normal-37%-51%)
Hematocrit- 41.5% (decrease)(normal-37%-51%)
Platelets- 200 (increase) (normal-155-379)
Neutrophils- 4.4 (increase) (normal-1.4-7.0)
White Blood Count- 6.5 (decrease) (normal-3.4-10.8)
White Blood Count- 6.5 (decrease) (normal-3.4-10.8)
Creatinine- 1.31 (decrease) (normal-0.76-1.27)H
BUN- 22 (increase) (normal 8-27)
eGFR- 57 (decrease) (normal above 59) L
eGFR- 57 (decrease) (normal above 59) L
Potassium- 4.1 (decrease) (normal 3.5-5.2)
Alkaline Phosphatase S- 113 (increase) (normal-39-117)
Protein- 6.0 (decrease) (normal- 6.0-8.5)
Albumin- 3.8 (increase) (normal- 3.6-4.8)
Ferritin- 1814 (increase) (normal- 30-400) H
Alkaline Phosphatase S- 113 (increase) (normal-39-117)
Protein- 6.0 (decrease) (normal- 6.0-8.5)
Albumin- 3.8 (increase) (normal- 3.6-4.8)
Ferritin- 1814 (increase) (normal- 30-400) H
OCTOBER 8.2015- Thursday
Regularly scheduled Pentamidine appointment.
No issues.
OCTOBER 7.2015- Wednesday
Regularly scheduled Phlebotomy appointment.
No issues.
SEPTEMBER 30.2015- Wednesday
Day +
Lab numbers: Labcorp (9/30)
Lab numbers: Labcorp (9/30)
Hemoglobin- 14.2 (increase) (normal-12.6-17.7)
Hematocrit- 43.6% (increase)(normal-37%-51%)
Hematocrit- 43.6% (increase)(normal-37%-51%)
Platelets- 199 (increase) (normal-155-379)
Neutrophils- 4.2 (increase) (normal-1.4-7.0)
Creatinine- 1.34 (increase) (normal-0.76-1.27) H
BUN- 19 (decrease) (normal 8-27)
eGFR- 55 (decrease) (normal above 59) L
eGFR- 55 (decrease) (normal above 59) L
Potassium- 4.2 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 112 (decrease) (normal-39-117)
Protein- 6.1 (unchanged) (normal- 6.0-8.5)
Albumin- 3.7 (decrease) (normal- 3.6-4.8)
Ferritin- 1814 (increase) (normal- 30-400) H
Just labs today, no doctors.
Alkaline Phosphatase S- 112 (decrease) (normal-39-117)
Protein- 6.1 (unchanged) (normal- 6.0-8.5)
Albumin- 3.7 (decrease) (normal- 3.6-4.8)
Ferritin- 1814 (increase) (normal- 30-400) H
Just labs today, no doctors.
Today was the third annual Scottsdale Transplant Center's Celebration of Life event.
Last year, Brian and his donor Cori, were the guests of honor.
The Transplant center flew her and her family out from Washington state to meet us. It was a magical weekend, with media coverage and tons of visiting, ending with a party at our place for the guest of honor.
This year, I woke up with a headache and couldn't make the drive.
We heard the event had outgrown it's venue of the last two years and was being held in a beautiful resort setting this year (although the old venue was also very nice).
A resort setting and a chance to break bread and visit with all the wonderful humans-doctors-nurses-friends who dedicate their lives to helping folks like B have a chance at living.
Danged headache!
But I do like hearing it's outgrown it's venue because, as a Celebration of Life for transplant survivors who make it through their first year and more, this means more folks are having transplant birthday milestones. Yay!
SEPTEMBER 23.2015- Wednesday
Day +952
T shot
B had his monthly IViG treatment (to boost his immune system) today at the east side Az Onc location.
It was routine.
SEPTEMBER 15.2015- Tuesday
Day +944
Lab numbers: Labcorp (9/14)
Lab numbers: Labcorp (9/14)
Hemoglobin- 13.1 (increase) (normal-12.6-17.7)
Hematocrit- 41.6% (decrease)(normal-37%-51%)
Hematocrit- 41.6% (decrease)(normal-37%-51%)
Platelets- 196 (decrease) (normal-155-379)
Neutrophils- 4.1 (decrease) (normal-1.4-7.0)
White Blood Count- 6.2 (decrease) (normal-3.4-10.8)
Creatinine- 1.25 (increase) (normal-0.76-1.27) (normal)
BUN- 22 (increase) (normal 8-27)
eGFR- 60 (decrease) (normal above 59) (normal)
eGFR- 60 (decrease) (normal above 59) (normal)
Potassium- 4.0 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 120 (increase) (normal-39-117) H
Protein- 6.1 (increase) (normal- 6.0-8.5)
Albumin- 3.8 (increase) (normal- 3.6-4.8)
We finally got up to Scottsdale to see Doc Schriber.
Had to cancel last month's visit because the morning of I developed a vision issue and couldn't drive. My eye has improved enough to make the trip today.
A pretty routine visit.
Labs are good. Doc S wasn't concerned about the low hemoglobin last month.
He doesn't think B needs to get twice a month phlebotomies though (which lower hemoglobin). He thinks if B's Ferritin is below 2000, just one phlebotomy a month is fine. He also thinks this will help with some of B's fatigue.
B was scheduled for a phlebotomy tomorrow so I have cancelled that visit.
He's not disappointed.
Four years into this human pincushion adventure he's been on, he still hates needles.
No getting used to that junk.
B remains too thin.
We are aware of this and making eating properly a priority.
These last two weeks he's vacillated between 140-143.
That's way too close to the one three nine number we do not want to see.
We've heard that weight gain can be a real bear post transplant and it's disappointing he lost those 6-8 lbs during the Noxafil experiment.
But, fingers crossed, his appetite will improve and he'll gain the lost weight back.
I've added a weight gain drink to his daily routine and I'm cooking like an Italian mother.
Eat, eat. Here, eat some more.
I did hear him say 'yummy' when he was eating breakfast the other day.
He doesn't like breakfast as a rule (but I'm now making it daily), so that was promising.
I'll fatten him up yet.
Alkaline Phosphatase S- 120 (increase) (normal-39-117) H
Protein- 6.1 (increase) (normal- 6.0-8.5)
Albumin- 3.8 (increase) (normal- 3.6-4.8)
We finally got up to Scottsdale to see Doc Schriber.
Had to cancel last month's visit because the morning of I developed a vision issue and couldn't drive. My eye has improved enough to make the trip today.
A pretty routine visit.
Labs are good. Doc S wasn't concerned about the low hemoglobin last month.
He doesn't think B needs to get twice a month phlebotomies though (which lower hemoglobin). He thinks if B's Ferritin is below 2000, just one phlebotomy a month is fine. He also thinks this will help with some of B's fatigue.
B was scheduled for a phlebotomy tomorrow so I have cancelled that visit.
He's not disappointed.
Four years into this human pincushion adventure he's been on, he still hates needles.
No getting used to that junk.
B remains too thin.
We are aware of this and making eating properly a priority.
These last two weeks he's vacillated between 140-143.
That's way too close to the one three nine number we do not want to see.
We've heard that weight gain can be a real bear post transplant and it's disappointing he lost those 6-8 lbs during the Noxafil experiment.
But, fingers crossed, his appetite will improve and he'll gain the lost weight back.
I've added a weight gain drink to his daily routine and I'm cooking like an Italian mother.
Eat, eat. Here, eat some more.
I did hear him say 'yummy' when he was eating breakfast the other day.
He doesn't like breakfast as a rule (but I'm now making it daily), so that was promising.
I'll fatten him up yet.
SEPTEMBER 14.2015- Monday
B saw Doc Hud today.
Decided to biopsy seven suspicious growths, 4 on his face and neck and 3 on his arm.
For the most part, B's facial skin still looks so much better, but Doc wants to play it safe so anything weird is getting checked out.
Doc wants B to start the Effudex treatment on his arms now.
Okee dokee. Hope this goes better than the Effudex face treatment which we think contributed to B's terrible 6 week illnesses July-August.
Update Monday 9/21- Of the seven biopsies, only one was positive for squamous cell cancer.
It was on his right wrist. Happily all the other's were AK or pre cancers. Yay. No cancer on his face this time.
SEPTEMBER 2.2015- Wednesday
B had a phlebotomy today.
We had to cancel 3 of these visits during those tough 6 weeks he went through in July/August.
Partly because he was feeling yukky, but also because his hemoglobin was too low to proceed a few times.
Anyhoo, aside from B feeling sick when we got there, it went smoothly.
No stick issues or flow issues.
I think I'm seeing a pattern here with B where, much like our Sheltie Annie would do when we'd pull into the vet's parking lot, B starts getting anxious when we pull into any of the Az Oncology parking lots.
His whole demeanor changes, he gets sweaty, queasy and weak.
Too much stuff has happened at these cancer places to him over these last four years and it's hard for him be relaxed.
I've witnessed every bit of that stuff and I totally get it.
Just wish there was a way he'd have an easier time with these visits since we still go there every few weeks.
But, he recovered quickly once the phlebotomy was successfully done and was a-okay by the time we got back home.
AUGUST 26.2015- Wednesday
Day +924
Lab numbers: Labcorp (8/21)
Lab numbers: Labcorp (8/21)
Hemoglobin- 12.8 (increase) (normal-12.6-17.7)
Hematocrit- 41.9% (increase)(normal-37%-51%)
Hematocrit- 41.9% (increase)(normal-37%-51%)
Platelets- 213 (increase) (normal-155-379)
Neutrophils- 5.1 (decrease) (normal-1.4-7.0)
White Blood Count- 7.4 (decrease) (normal-3.4-10.8)
Creatinine- 1.41 (increase) (normal-0.76-1.27) (H)
BUN- 15 (increase) (normal 8-27)
eGFR- 52 (decrease) (normal above 59) (L)
eGFR- 52 (decrease) (normal above 59) (L)
Potassium- 3.6 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 133 (increase) (normal-39-117) H
Protein- 5.8 (increase) (normal- 6.0-8.5) L
Albumin- 3.8 (increase) (normal- 3.6-4.8)
Ferritin- 1785 (decrease) (normal- 30-400) H
T shot
A Doc Chen day today.
The standard stuff, a quick check up, schedule next months appts. and get his monthly IViG treatment.
Labs remain stable. Glad to see his hemoglobin came up a bit.
Maybe he'll be able to have a phlebotomy next week.
His edema has finally gone away, but without the excess fluid on board, B's a skinny boy.
I'm a bit concerned about his weight ( around 141-144).
With the non-stop queasiness he felt for those 6 weeks, I get that his appetite was poor and he probably lost weight during that time.
It was hard to track because the weight of the edema was masking his weight loss.
And, his appetite remains poor, so it's going to take some diligence to make sure he's getting the nourishment he needs to put a few pounds back on here and there.
I certainly don't want him losing anymore.
139 would not be a good thing, so I gotta figure out a way to kick start his appetite.
Now that he's feeling better, he's enjoying his musical adventures again.
Sounds of singing, harmonica and guitar are once again wafting through our home.
Whew.
Those were a few tough months.
Here's hoping those kind of months stay in the rear view mirror.
Let's finish this year with better health and lots of happy gatherings with family and friends.
Wish it was that easy, but hey, I'm putting it out there in the universe.
Let's see what happens.
Alkaline Phosphatase S- 133 (increase) (normal-39-117) H
Protein- 5.8 (increase) (normal- 6.0-8.5) L
Albumin- 3.8 (increase) (normal- 3.6-4.8)
Ferritin- 1785 (decrease) (normal- 30-400) H
T shot
A Doc Chen day today.
The standard stuff, a quick check up, schedule next months appts. and get his monthly IViG treatment.
Labs remain stable. Glad to see his hemoglobin came up a bit.
Maybe he'll be able to have a phlebotomy next week.
His edema has finally gone away, but without the excess fluid on board, B's a skinny boy.
I'm a bit concerned about his weight ( around 141-144).
With the non-stop queasiness he felt for those 6 weeks, I get that his appetite was poor and he probably lost weight during that time.
It was hard to track because the weight of the edema was masking his weight loss.
And, his appetite remains poor, so it's going to take some diligence to make sure he's getting the nourishment he needs to put a few pounds back on here and there.
I certainly don't want him losing anymore.
139 would not be a good thing, so I gotta figure out a way to kick start his appetite.
Now that he's feeling better, he's enjoying his musical adventures again.
Sounds of singing, harmonica and guitar are once again wafting through our home.
Whew.
Those were a few tough months.
Here's hoping those kind of months stay in the rear view mirror.
Let's finish this year with better health and lots of happy gatherings with family and friends.
Wish it was that easy, but hey, I'm putting it out there in the universe.
Let's see what happens.
AUGUST 20.2015- Thursday
A good news post.
B saw his oral surgeon today and the breach between his mouth and sinus cavity has finally closed completely.
And he got permission to play harmonica again!
Yay!
Also, he continues to feel pretty darn good without the Noxafil on board.
After six tough weeks, he's had almost 6 good days in a row now.
Another yay!
AUGUST 15.2015- Saturday
I couldn't wait until early next week to see if the Noxafil is the culprit for B's ongoing bout of feeling downright yukky.
Enough is enough, so I decided to abandon B's Noxafil dose last night, and this morning, B woke up feeling much better. His last dose of Noxafil was Thursday night.
He's feeling so much better today, it seems pretty obvious that Noxafil is indeed the culprit.
Wow. Here's hoping B has some more feel good days coming.
He still has a bit of ongoing edema in his ankles and feet, but at least that's not making him uncomfortable.
Next set of labs will hopefully clue us in on why he has this edema.
Update- August 19- Wednesday- B continues to improve without Noxafil on board.
No queasiness, carsickness or diarrhea since last Friday.
Reluctantly, we have restarted Voriconazole, but I heard from Jocelyn today, that a new anti fungal is now on the market that Doc Schriber wants to try soon.
Perhaps it won't make B sick or cause Squamous Cell cancer.
I don't know how this will pan out, but I do know that right now B has had 5 good days in a row. He's seems so much better, I found myself crying from relief today.
I am seeing glimpses of my old B, and I love it.
I bet he does too.
Whew.
AUGUST 11.2015- Tuesday
Day +909
Lab numbers: Labcorp (8/10)
Lab numbers: Labcorp (8/10)
Hemoglobin- 11.8 (increase) (normal-12.6-17.7) L
Hematocrit- 37.3% (decrease)(normal-37%-51%)
Hematocrit- 37.3% (decrease)(normal-37%-51%)
Platelets- 203 (unchanged) (normal-155-379)
Neutrophils- 5.3 (increase) (normal-1.4-7.0)
White Blood Count- 7.6 (increase) (normal-3.4-10.8)
Creatinine- 1.21 (increase) (normal-0.76-1.27) (normal)
BUN- 11 (decrease) (normal 8-27)
eGFR- 62 (decrease) (normal above 59) (normal)
eGFR- 62 (decrease) (normal above 59) (normal)
Potassium- 3.2 (unchanged) (normal 3.5-5.2) L
Alkaline Phosphatase S- 116 (decrease) (normal-39-117)
Protein- 5.0 (new) (normal- 6.0-8.5) L
Albumin- 3.2 (new) (normal- 3.6-4.8) L
Today was supposed to be a Doc Schriber day, in Scottsdale, but I developed a vision issue last night and couldn't make that freeway drive this morning.
So, we did this visit via emails and telephone calls to Jocelyn, our Bone Marrow Transplant coordinator.
She ran the important stuff by Doc Schriber and we developed a plan to figure out what the heck is going on with B.
Mostly, give it a few more days to see if B improves, and if he doesn't, consider stopping the Noxafil early next week.
I had a laundry list of issues I wanted to address at this visit, but most were not time sensitive, so they can wait till we get up there next month.
I am concerned about B's recent blood counts, especially his hemoglobin and hematocrit.
They remain low, despite no phlebotomies for over a month, and a T shot a few weeks ago, which usually gives those counts a boost.
Maybe these low blood counts are tied to whatever's causing B to feel so ill these last 6 weeks.
And, B's developed edema again in his ankles and feet. Started around 7/24, and keeps hanging on. He's had a few doses of a diuretic (losing 5 lbs of water overnight 7/26-27), but he's still not edema free yet.
Keeping an eye on this.
Alkaline Phosphatase S- 116 (decrease) (normal-39-117)
Protein- 5.0 (new) (normal- 6.0-8.5) L
Albumin- 3.2 (new) (normal- 3.6-4.8) L
Today was supposed to be a Doc Schriber day, in Scottsdale, but I developed a vision issue last night and couldn't make that freeway drive this morning.
So, we did this visit via emails and telephone calls to Jocelyn, our Bone Marrow Transplant coordinator.
She ran the important stuff by Doc Schriber and we developed a plan to figure out what the heck is going on with B.
Mostly, give it a few more days to see if B improves, and if he doesn't, consider stopping the Noxafil early next week.
I had a laundry list of issues I wanted to address at this visit, but most were not time sensitive, so they can wait till we get up there next month.
I am concerned about B's recent blood counts, especially his hemoglobin and hematocrit.
They remain low, despite no phlebotomies for over a month, and a T shot a few weeks ago, which usually gives those counts a boost.
Maybe these low blood counts are tied to whatever's causing B to feel so ill these last 6 weeks.
And, B's developed edema again in his ankles and feet. Started around 7/24, and keeps hanging on. He's had a few doses of a diuretic (losing 5 lbs of water overnight 7/26-27), but he's still not edema free yet.
Keeping an eye on this.
AUGUST 7.2015- Friday
Day +905
B saw Doc Hud again today.
B continues to feel really sick.
These last 6 weeks have been like a roller coaster, with a few ups, but mostly downs for him.
Nausea, weakness and diarrhea have been dogging him off and on for over a month.
We thought it might be the Effudex, or the staph infection or maybe the antibiotic that have been contributing to his misery.
In fact, I called Doc Hud Tuesday 8/4 to see if the 8 days of the antibiotic Chephalexin
that B had completed (for a staph infection) was enough. Maybe his queasiness and diarrhea would abate without it. Doc Hud said stop the antibiotic, but 3 days later, that doesn't seem to be the answer either.
On a good note, B's facial skin looks so much better!
The (now almost healed) brutal Effudex treatment did it's job and B's face looks great.
No obvious Squamous Cell garbage going on.
We can see just a few minor potential lesions, but Doc says we'll wait a few weeks to see if they become something or not. They might just be a bit of post Effudex healing still going on.
I wish B felt well enough to enjoy this small victory, but he just doesn't.
I also wish I had the answer as to what the heck it is that's making him sick.
We continue searching and hoping we get it figured out. Soon.
I'm beginning to think it's the Noxafil. I think the Effudex, staph infection and even the antibiotic are far enough behind him, that they aren't the culprits.
It would be shame if it's the Noxafil and he has to go back on the Squamous Cell fueling drug Voriconazole, but dang, B's quality of life has been the pits this last month or so.
If Noxafil's the culprit, it's got to go.
Sure wish he didn't need an prophylactic anti fungal med, but it's an essential tool in post transplant patients, where just a single invasive fungal infection could be deadly.
Like dead deadly.
No thanks.
He'll take a med.
JULY 31.2015- Friday
Day +898
Lipid Panel-(7/23)
Cholesterol- 119 mg (normal-100-199)
Triglycerides- 138mg (normal-0-149)
HDL Cholesterol- 43mg (normal->39)
VLDL Cholesterol Cal- 28mg (normal-5-40)
LDL Cholesterol Calc- 48mg (normal-0-99)
B saw Doc Adler, his primary care physician today.
A regularly scheduled bi yearly well check up, but B is still not really well.
His queasiness is off the charts, and he's weak as a puppy.
This visit seemed redundant, more for Doc Adler's convenience than B's.
His answers to B's questions were almost silly.
B sees so many doctors all the time, I'm thinking we are going to make these wellness check-up visits to Doc Adler few and far between from now on.
There's no need.
He did get a lipid panel for this visit and it was nice to see that those labs are all in the normal range.
I guess his Crestor is doing it's job.
JULY 29.2015- Wednesday
Day +896
T shot
B had an IViG treatment today at the eastside Az Onc location.
This treatment helps boost his immune system, so I'm glad we already had it on our schedule. He definitely needs an immune boost as he fights the staph infection on his skin.
He also had his T shot, which should help his blood counts recover.
Monday's labs were negative for a staph infection in his blood.
Thank goodness.
He's still not feeling much better, but he's only been on the antibiotic for 3 days.
Anytime now he should start feeling better.
Update: Friday 7/31- B is finally feeling better.
Not great, but better. Here's hoping he improves more each day. This has been a difficult month for him and he needs some feel good time.
This month has taken a toll on both of our spirits.
We need to find our happy selves again.
Update: Saturday 8/1- He's sick again. That sure didn't last long.
JULY 27.2015- Monday
Lab numbers: Labcorp (7/27)
Hemoglobin- 11.7 (increase) (normal-12.6-17.7) L
Hematocrit- 37.7% (increase)(normal-37%-51%)
Hematocrit- 37.7% (increase)(normal-37%-51%)
Platelets- 203 (increase) (normal-155-379)
Neutrophils- 4.6 (decrease) (normal-1.4-7.0)
White Blood Count- 6.7 (decrease) (normal-3.4-10.8)
Creatinine- 1.19 (decrease) (normal-0.76-1.27) (normal)
BUN- 13 (decrease) (normal 8-27)
eGFR- 64 (increase) (normal above 59) (normal)
eGFR- 64 (increase) (normal above 59) (normal)
Potassium- 3.2 (decrease) (normal 3.5-5.2) L
Alkaline Phosphatase S- 125 (increase) (normal-39-117) H
Doc Hud's Friday cultures of B's skin did indeed reveal he has a staph infection.
He's started a 10 day regime of Cephalexin today to treat it.
It's unusual for B to get labs done twice in one week, but because he's feeling so funky, we did.
Scottsdale added a blood culture to make sure B's staph infection hasn't become systemic.
B continues to feel bad.
Zero energy, queasy and achy.
The only improvement is with his face.
When we saw Doc Hud Friday, he recommended soaking B's face with a white vinegar solution to start loosening the huge, thick scabs that the Effudex treatment had left on B's face.
The staph infection is under those scabs and they needed to come off.
We spent the weekend doing just that and most of the scabs are gone.
His face looks so much better, but more importantly, it doesn't hurt anymore, which is a huge improvement. He spent 3+ weeks with intense pain on his face.
Now, if we could get the rest of him feeling better.
Here's hoping the meds do their thing and get him well.
On a side note, B's kidney labs were in the normal range this time.
That's rare.
And puzzling, because last week B had a stint of water retention again in his legs, ankles and feet. He gained about 8 lbs of water in just a few days.
I gave him a diuretic for 3 days and he's back to normal now, but we thought for sure his kidney numbers would be bad this time, and instead, they are the best they've been in a long time.
Ahhh, the human body, it can be so confusing at times.
Update: Negative for staph infection in his bloodstream. Yay.
Alkaline Phosphatase S- 125 (increase) (normal-39-117) H
Doc Hud's Friday cultures of B's skin did indeed reveal he has a staph infection.
He's started a 10 day regime of Cephalexin today to treat it.
It's unusual for B to get labs done twice in one week, but because he's feeling so funky, we did.
Scottsdale added a blood culture to make sure B's staph infection hasn't become systemic.
B continues to feel bad.
Zero energy, queasy and achy.
The only improvement is with his face.
When we saw Doc Hud Friday, he recommended soaking B's face with a white vinegar solution to start loosening the huge, thick scabs that the Effudex treatment had left on B's face.
The staph infection is under those scabs and they needed to come off.
We spent the weekend doing just that and most of the scabs are gone.
His face looks so much better, but more importantly, it doesn't hurt anymore, which is a huge improvement. He spent 3+ weeks with intense pain on his face.
Now, if we could get the rest of him feeling better.
Here's hoping the meds do their thing and get him well.
On a side note, B's kidney labs were in the normal range this time.
That's rare.
And puzzling, because last week B had a stint of water retention again in his legs, ankles and feet. He gained about 8 lbs of water in just a few days.
I gave him a diuretic for 3 days and he's back to normal now, but we thought for sure his kidney numbers would be bad this time, and instead, they are the best they've been in a long time.
Ahhh, the human body, it can be so confusing at times.
Update: Negative for staph infection in his bloodstream. Yay.
Lab numbers: Labcorp (7/23)
Hemoglobin- 10.9 (decrease) (normal-12.6-17.7) L
Hematocrit- 35.3% (decrease)(normal-37%-51%)L
Hematocrit- 35.3% (decrease)(normal-37%-51%)L
Platelets- 193 (decrease) (normal-155-379)
Neutrophils- 5.3 (increase) (normal-1.4-7.0)
White Blood Count- 7.7 (decrease) (normal-3.4-10.8)
Creatinine- 1.33 (decrease) (normal-0.76-1.27) H
BUN- 16 (decrease) (normal 8-27)
eGFR- 56 (increase) (normal above 59) L
eGFR- 56 (increase) (normal above 59) L
Potassium- 3.8 (decrease) (normal 3.5-5.2)
Alkaline Phosphatase S- 116 (increase) (normal-39-117)
Alkaline Phosphatase S- 116 (increase) (normal-39-117)
I also think he's retaining water again.
We heard from Mary at Az Onc yesterday afternoon with B's lab results.
I haven't been able to pull them up yet, but she said his kidney function look okay.
The only anomalies she reported was his hemoglobin and hematocrit were low.
Lower than they've been in a long time.
That worries me somewhat. Usually those numbers rebound within a week or so of phlebotomy. Hope his marrow is behaving.
We skipped his phlebotomy on Wednesday because he was feeling yukky, and it turns out he wouldn't of been able to have it anyway because of those low blood counts.
I sure hope we can get him feeling better soon.
We won't know the results of yesterday's Doc Hud cultures until Tuesday, but I'm wondering if he does have a staph infection, could this be what is making him feel ill.
Of course, it's the weekend, when getting a Doc is a bit more difficult, but if he's still funky tomorrow, I'm gonna reach out anyway.
Update: Got a call Monday 7/27 that B is positive for a staph infection on his skin.
Started a 10 day Cephilexin regime.
He's feeling so funky we're wondering if it's become systemic somehow.
He's running fevers now.
I'm going to see if Scottsdale has any thoughts, maybe they can do a blood culture to be sure the staph infection isn't in his bloodstream.
Update: Scottsdale has added a blood culture to labs we are doing today Monday 7/27.
JULY 24.2015- Friday
B has been getting sicker and sicker this last month.
His face pain has been off the charts, and his general health has been poor.
He's been weak, with nausea of and on.
Then, first thing this morning, he woke up hurting as usual when suddenly, his face pain subsided, as if a pain switch had been flipped off.
He got up this morning feeling much better pain wise.
Wow, what a relief. I've actually been scared that something bad is happening with him that we don't know about.
I had him get labs done yesterday so we can rule out organ failure.
We should get those results later today.
His face still looks scary, it's a mess, so I got him in to see Doc Hud this morning.
Surprisingly, Doc Hud wasn't too upset by the appearance of B's response to the Effudex.
He called it a good response, meaning it was doing it's job.
The only thing he did think was happening, was perhaps B's developed a staph infection in some of the scabbing.
Cultures were taken, and I'm to soak all the lesions with a mild vinegar solution twice a day.
This should help keep a staph infection in check until it can be medicated if he does indeed have one.
JULY 17.2015- Friday
The redness on B's right side of his neck is now all the way down to his shoulder. It doesn't seem right, almost looks like cellulitis.
I called the Dermatologist's office again to see if they could fit him in to look at the redness. While I was waiting, B mentioned to me that he may have applied the Effudex once or twice down low on that side. That would explain the recent, new redness, so hopefully he doesn't have cellulitis or an infection.
I let them know that once they returned to the phone and told them we'd do a wait and see on the redness. I asked them if there is anything I can apply to B's face to help it heal.
1% Hydrocortizone cream is recommended.
Started that today.
Have I mentioned that he is simply miserable right now?
JULY 16.2015- Thursday
B's regularly scheduled monthly Pentamidine treatment at TMC.
No issues, although B's face continues to cause him misery.
It is getting steadily worse, not better.
Residual Effudex effects maybe?
JULY 15.2015- Wednesday
B was only been able to tolerate a few more Effudex treatments.
He completed 10 in all, spread out over these last two weeks.
I called the Dermatologist office today to tell them I think it's too much, that he needs to be done.
He's physically ill, with side effects similar to chemo.
I've been reading about Effudex and I think it's gotten into his bloodstream through the horrible wounds on his face.
The Doc said to stop the treatment.
Thank goodness.
He looks napalmed. Burned. Blistered. Miserable.
He says on a scale of 1-10 for pain, his face pain is a 10!
This guy has been through some real hard stuff these last few years and he's never rated any of his pain a 10 before. Dang.
The only thing that seems to help some is Ibuprofen.
He's really not supposed to take a bunch of that because of his kidney issues, but he is using 400 mgs of it once or twice a day to help relieve the pain and inflammation.
JULY 10.2015- Friday
B saw Doc Chen today.
He's completed 8 days of Effudex in the last 10 days.
His face is very painful from the Effudex treatment, and he's got what he feels is more than just topical pain, on the right side of his neck, just below his jawline and right ear.
He's worried that what happened to his brother J, might now be happening to him.
J had squamous cell cancer in the same area, but because of insurance issues, it went untreated for over a year and ended up spreading.
He eventually got the tumors removed through a local charity clinic, but always complained that it still hurt, and feared the docs hadn't gotten it all. Turns out he was right.
The squamous cell cancer had spread, wrapping itself around J's carotid artery and becoming a huge tumor, which eventually killed him.
Anyway, because of the pain, B is worried that maybe one of his squamous cell lesions has started to spread inward.
He wants a scan of some kind to rule this out.
Doc Chen agreed to see him on short notice and ordered a CT scan (without contrast because of B's kidney issues), which was also done today.
She can't feel any lumps or swelling in the area, but knows how concerned B is and wants him to have some peace of mind.
His face is covered in angry red skin and huge scabs from the Effudex treatment, and that's probably what's causing his pain, but we need to err on the side of caution here.
I also had Doc Hud feel for lumps when we saw him last Thursday, but he too, did not feel any thing unusual.
Here's hoping the CT scan will rule out anything dangerous.
Update- Friday evening- Doc Chen called and said the CT scan was negative. No sign of a tumor there.
Whew.
But he still has the pain, so we will remain diligent and perhaps ask for a more informative scan should the pain not go away once he completes the Effudex treatment plan (21 days) and starts to heal.
JULY 8.2015- Wednesday
Lab numbers: Labcorp (7/7)
Hemoglobin- 13.7 (increase) (normal-12.6-17.7) L
Hematocrit- 43.5% (increase)(normal-37%-51%)
Hematocrit- 43.5% (increase)(normal-37%-51%)
Platelets- 202 (increase) (normal-155-379)
Neutrophils- 4.9 (decrease) (normal-1.4-7.0)
White Blood Count- 8.1 (decrease) (normal-3.4-10.8)
Creatinine- 1.44 (decrease) (normal-0.76-1.27) H
BUN- 18 (decrease) (normal 8-27)
eGFR- 51 (increase) (normal above 59) L
eGFR- 51 (increase) (normal above 59) L
Potassium- 4.1 (decrease) (normal 3.5-5.2)
Alkaline Phosphatase S- 106 (increase) (normal-39-117)
Ferritin- 1978 (increase of 431!) (normal- 30-400) H
B had phlebotomy today.
Wasn't sure he'd be up to it as he's been sick since Sunday.
Not sure what's causing it. Maybe he ate something bad on the 4th, or it's his new medicine Noxafil or even the Effudex topical chemo he's in the midst of.
Who knows? He just feels yukky.
We started the Noxafil a few weeks ago, and he was just fine.
Hopefully, it's not that.
The Effudex treatment is brutal.
So far he's done 6 treatments since July 1st. 6 of 8 days.
His face is blistering and painful and if pain can cause a spike in Ferritin levels, looks like he's pretty darned miserable.
That number jumped 431, and right when it was finally coming down nicely.
Thankfully, most of his other labs are holding steady.
I sure hope whatever's got a hold of him, moves on quickly.
I hate to see him so uncomfortable.
Ugh.
Alkaline Phosphatase S- 106 (increase) (normal-39-117)
Ferritin- 1978 (increase of 431!) (normal- 30-400) H
B had phlebotomy today.
Wasn't sure he'd be up to it as he's been sick since Sunday.
Not sure what's causing it. Maybe he ate something bad on the 4th, or it's his new medicine Noxafil or even the Effudex topical chemo he's in the midst of.
Who knows? He just feels yukky.
We started the Noxafil a few weeks ago, and he was just fine.
Hopefully, it's not that.
The Effudex treatment is brutal.
So far he's done 6 treatments since July 1st. 6 of 8 days.
His face is blistering and painful and if pain can cause a spike in Ferritin levels, looks like he's pretty darned miserable.
That number jumped 431, and right when it was finally coming down nicely.
Thankfully, most of his other labs are holding steady.
I sure hope whatever's got a hold of him, moves on quickly.
I hate to see him so uncomfortable.
Ugh.
Doc Hud's today to work on removing more tissue from a positive for Squamous Cell cancer biopsy site.
Trying to avoid MOHS surgery on that lesion site.
B started topical chemotherapy Effudex yesterday, with instructions to use it for 3 weeks on his face. Once his face is treated, he will use it on his arms as well. Can't do them both at the same time because it will make him chemo ill.
This stuff will also make his face blister and peel, so he's gonna get worse before better, but hopefully, ultimately he will get better.
He also successfully restarted the anti fungal Noxafil a week ago today, on 6/25.
This means he is no longer taking his other anti fungal, Voriconazole, which is proven to cause Squamous Cell cancer.
Between these two new changes, maybe his skin will finally stop being a Squamous Cell factory.
I sure hope so.
This has become a very painful issue for him and I hate seeing him hurt all the time.
And then there's the scary memory of losing B's brother J to Squamous Cell cancer of the face and neck last year.
It was a gruesome way to go and I know it's in the back of B's mind all the time as he wages his own battle against these skin cancer beasts.
JUNE 29. 2015- Monday
B saw his oral surgeon Doc Wood again today.
For a few hours yesterday, B thought the hole/breach between his mouth and sinus was getting better.
He can tell it's there because air passes between the two areas through the hole in his gum.
The air passage seemed reduced for several hours, but by the time we went to the Doc's, it was happening again.
But, the Doc thinks B's slooooowly healing, and that tissue is filling in the hole.
And, while air is still communicating between B's mouth and sinus, liquid and food aren't, so the Doc's okay with this.
The plan is to wait a month, then take another look to see if more tissue growth occurs.
Of course, if things change, or if B gets symptoms of a sinus infection, we'll get him in sooner.
JUNE 24. 2015- Tuesday
Lab numbers: Labcorp (6/22)
Hemoglobin- 12.3 (decrease) (normal-12.6-17.7) L
Hematocrit- 39.0% (decrease)(normal-37%-51%)
Hematocrit- 39.0% (decrease)(normal-37%-51%)
Platelets- 200 (increase) (normal-155-379)
Neutrophils- 6.2 (increase) (normal-1.4-7.0)
White Blood Count- 8.5 (increase) (normal-3.4-10.8)
Creatinine- 1.47 (increase) (normal-0.76-1.27) H
BUN- 20 (decrease) (normal 8-27)
eGFR- 49 (decrease) (normal above 59) L
eGFR- 49 (decrease) (normal above 59) L
Potassium- 4.5 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 101 (decrease) (normal-39-117)
Ferritin- 1547 (decrease of 168!) (normal- 30-400) H
IViG
Day+ 861
Today was a Doc Chen day.
She gave him a quick look see.
She couldn't help but notice all the angry biopsy and freeze-burned sores all over B's arms and face. 23 in all.
We let her know what Doc Schriber had said at our last visit about not thinking B's angry skin was GVHD, but more skin cancer and sun damage, requesting on his behalf that we ask Doc Hud to be more aggressive in treating the lesions.
She asked us to ask Doc Hud to add the topical chemotherapy Effudex to B's treatment plan as well.
Then she took care of scheduling labs, Phlebotomies, IViG's, and our next visit with her.
We are going to get an extra month in between visits with her this time.
Yay. Lots of Doc visits lately. A little break will be welcomed.
Anyhoo, speaking of Phlebotomies, B's Ferritin level has finally gotten below 1600!!
1547 to be exact!
That's the lowest it's been in 3+ years!
Still way too high, but considering it was in the 4000's a few years ago, it's definitely better.
Twice a month Phlebotomies are slowly doing their job.
We have a suspicion that the high Ferritin levels add to B's overall body pain, so we are hoping that someday, if he can get those levels in the normal range (less than 400), he will feel better yet.
B also had his monthly IViG treatment today.
It went smoothly, with no issues.
JUNE 22. 2015- Monday
Boy, it's just the 3rd week of June, but we've had a lot of Doc appointments this month.
7 so far, an average of 3 a week.
Today, it was B's dermatologist Doc Hud's turn .
B had 7 or 8 suspicious lesions removed for biopsy and about 15 other suspicious lesions frozen off.
The poor guy.
This was a very painful visit for him.
We actually asked Doc Hud to be more aggressive, at Doc Schriber's request.
I mentioned on my June 9th post, that Doc S doesn't really think all the junk on B's arms and face is GVHD. He thinks the GVHD is actually looking quite calm.
He thinks all the other stuff on B's face and arms is sun damaged pre cancers and active Squamous Cell cancers. Hence the request to have Doc Hud really get aggressive for a while to try to get this under control.
Update June 29th- Of the 8 lesions biopsied, 2 were Squamous Cell. The others were AK's.
One of the Squamous Cell cancers, was treated at time of biopsy (meaning he got all the cancerous cells with the biopsy cut) but the other one, on B's left cheek, still had cancer cells on the edges.
Usually this would mean MOHS surgery, but Doc Hud wants B to come back in and let him have another go at that one to see if MOHS can be avoided.
I had planned on mentioning to Doc Hud that Doc Chen was hoping he would add topical chemotherapy to B's treatment plan, but he beat me to the punch and brought it up on his own. He wants B to start using the topical chemotherapy drug, Effudex all over his face for the next three weeks.
He's used it before and it can be brutal, but Doc says it is successful at treating these topical Squamous Cell cancers before they get out of control.
Update July 2- Returned to Doc Hud's and got the left malor cheek lesion treated further. He cut out more tissue and cauterized the wound.
B was miserable. He really hates these visits, they are very painful.
On a positive note, we were able to successfully restart the anti fungal drug Noxafil last week. Last time we tried it, about 10 weeks ago, he got sick the second day, so we had to discontinued it.
We knew we'd give it another go at some point to rule out coincidental illness, and we are very pleased he's having no issue with it at all this time. Yay.
Hopefully, by getting off the Squamous Cell fueling anti fungal Voriconazole med, and adding the topical chemo Effudex (started 7/1) to the treatment plan, B will have less and less skin cancer issues in the future.
Fingers crossed.
JUNE 18. 2015- Thursday
Today B (and I) saw our Ophthalmologist, Doc Synder.
Discussed the GVHD in B's left tear duct that keeps that eye red, weepy and dry.
I know, it's weird that it can be weepy and dry at the same time, but it is.
The dryness causes excessive weepiness for a while, then it drys out again. It's a vicious cycle.
Anyhoo, he wants B to start a nighttime eye drop to see if it helps keep the eye more moist, especially when B first wakes up.
There are more invasive things that can be done, such as cauterizing the tear duct, but we always like to try the less invasive stuff first.
Update June 20- Tried the nighttime eye drop, but B hates it. It's more of a gel than a drop, and he only let me do it once. I'm hoping he'll give it another go at some point so he can see if it helps.
He's really a good patient most of the time, doing all I ask of him, so I'm not going to push the issue unless his eye gets worse.
I gotta choose my battles with him sometimes.
As I said, considering how much he goes through in a given day, he's a really good patient 99% of the time.
I'm cutting him some slack on this one.
JUNE 17. 2015- Wednesday
T shot
B had Phlebotomy today at the eastside location of Az Oncology.
JUNE 16. 2015- Tuesday
B's regularly scheduled Pentamidine treatment at TMC.
As as a post Stem Cell Transplant patient, he gets this treatment to help keep his lungs safe from infections.
JUNE 10. 2015- Wednesday
Follow up with Doc Wood, the oral surgeon to see if the hole between B's mouth and sinus cavity, caused by an upper molar extraction, has started to close.
It remains the same, so all restrictions remain in place, including no wind instruments.
I miss B's harmonica playing.
Alkaline Phosphatase S- 101 (decrease) (normal-39-117)
Ferritin- 1547 (decrease of 168!) (normal- 30-400) H
IViG
Day+ 861
Today was a Doc Chen day.
She gave him a quick look see.
She couldn't help but notice all the angry biopsy and freeze-burned sores all over B's arms and face. 23 in all.
We let her know what Doc Schriber had said at our last visit about not thinking B's angry skin was GVHD, but more skin cancer and sun damage, requesting on his behalf that we ask Doc Hud to be more aggressive in treating the lesions.
She asked us to ask Doc Hud to add the topical chemotherapy Effudex to B's treatment plan as well.
Then she took care of scheduling labs, Phlebotomies, IViG's, and our next visit with her.
We are going to get an extra month in between visits with her this time.
Yay. Lots of Doc visits lately. A little break will be welcomed.
Anyhoo, speaking of Phlebotomies, B's Ferritin level has finally gotten below 1600!!
1547 to be exact!
That's the lowest it's been in 3+ years!
Still way too high, but considering it was in the 4000's a few years ago, it's definitely better.
Twice a month Phlebotomies are slowly doing their job.
We have a suspicion that the high Ferritin levels add to B's overall body pain, so we are hoping that someday, if he can get those levels in the normal range (less than 400), he will feel better yet.
B also had his monthly IViG treatment today.
It went smoothly, with no issues.
JUNE 22. 2015- Monday
Boy, it's just the 3rd week of June, but we've had a lot of Doc appointments this month.
7 so far, an average of 3 a week.
Today, it was B's dermatologist Doc Hud's turn .
B had 7 or 8 suspicious lesions removed for biopsy and about 15 other suspicious lesions frozen off.
The poor guy.
This was a very painful visit for him.
We actually asked Doc Hud to be more aggressive, at Doc Schriber's request.
I mentioned on my June 9th post, that Doc S doesn't really think all the junk on B's arms and face is GVHD. He thinks the GVHD is actually looking quite calm.
He thinks all the other stuff on B's face and arms is sun damaged pre cancers and active Squamous Cell cancers. Hence the request to have Doc Hud really get aggressive for a while to try to get this under control.
Update June 29th- Of the 8 lesions biopsied, 2 were Squamous Cell. The others were AK's.
One of the Squamous Cell cancers, was treated at time of biopsy (meaning he got all the cancerous cells with the biopsy cut) but the other one, on B's left cheek, still had cancer cells on the edges.
Usually this would mean MOHS surgery, but Doc Hud wants B to come back in and let him have another go at that one to see if MOHS can be avoided.
I had planned on mentioning to Doc Hud that Doc Chen was hoping he would add topical chemotherapy to B's treatment plan, but he beat me to the punch and brought it up on his own. He wants B to start using the topical chemotherapy drug, Effudex all over his face for the next three weeks.
He's used it before and it can be brutal, but Doc says it is successful at treating these topical Squamous Cell cancers before they get out of control.
Update July 2- Returned to Doc Hud's and got the left malor cheek lesion treated further. He cut out more tissue and cauterized the wound.
B was miserable. He really hates these visits, they are very painful.
On a positive note, we were able to successfully restart the anti fungal drug Noxafil last week. Last time we tried it, about 10 weeks ago, he got sick the second day, so we had to discontinued it.
We knew we'd give it another go at some point to rule out coincidental illness, and we are very pleased he's having no issue with it at all this time. Yay.
Hopefully, by getting off the Squamous Cell fueling anti fungal Voriconazole med, and adding the topical chemo Effudex (started 7/1) to the treatment plan, B will have less and less skin cancer issues in the future.
Fingers crossed.
JUNE 18. 2015- Thursday
Today B (and I) saw our Ophthalmologist, Doc Synder.
Discussed the GVHD in B's left tear duct that keeps that eye red, weepy and dry.
I know, it's weird that it can be weepy and dry at the same time, but it is.
The dryness causes excessive weepiness for a while, then it drys out again. It's a vicious cycle.
Anyhoo, he wants B to start a nighttime eye drop to see if it helps keep the eye more moist, especially when B first wakes up.
There are more invasive things that can be done, such as cauterizing the tear duct, but we always like to try the less invasive stuff first.
Update June 20- Tried the nighttime eye drop, but B hates it. It's more of a gel than a drop, and he only let me do it once. I'm hoping he'll give it another go at some point so he can see if it helps.
He's really a good patient most of the time, doing all I ask of him, so I'm not going to push the issue unless his eye gets worse.
I gotta choose my battles with him sometimes.
As I said, considering how much he goes through in a given day, he's a really good patient 99% of the time.
I'm cutting him some slack on this one.
JUNE 17. 2015- Wednesday
T shot
B had Phlebotomy today at the eastside location of Az Oncology.
JUNE 16. 2015- Tuesday
B's regularly scheduled Pentamidine treatment at TMC.
As as a post Stem Cell Transplant patient, he gets this treatment to help keep his lungs safe from infections.
JUNE 10. 2015- Wednesday
Follow up with Doc Wood, the oral surgeon to see if the hole between B's mouth and sinus cavity, caused by an upper molar extraction, has started to close.
It remains the same, so all restrictions remain in place, including no wind instruments.
I miss B's harmonica playing.
JUNE 9. 2015- Tuesday
Lab numbers: Labcorp (6/8)
Hemoglobin- 12.9 (decrease) (normal-12.6-17.7)
Hematocrit- 40.5% (decrease)(normal-37%-51%)
Hematocrit- 40.5% (decrease)(normal-37%-51%)
Platelets- 193 (decrease) (normal-155-379)
Neutrophils- 3.1 (decrease) (normal-1.4-7.0)
White Blood Count- 5.9 (decrease) (normal-3.4-10.8)
Creatinine- 1.44 (decrease) (normal-0.76-1.27) H
BUN- 21 (unchanged) (normal 8-27)
eGFR- 51 (increase) (normal above 59) L
eGFR- 51 (increase) (normal above 59) L
Potassium- 4.2 (decrease) (normal 3.5-5.2)
Alkaline Phosphatase S- 109 (increase) (normal-39-117)
Ferritin- 1715 (decrease) (normal- 30-400) H
Day+ 846
Today was a Doc Schriber day.
It's been two months since we've seen him, I think the longest gap since transplant.
It was fairly routine. B's labs are all pretty good, so no issues there.
B wanted to talk about the GVH on his face and arms, which appears worse, but also hurts all the time now.
We were wondering if GVH is painful or if something else could be going on.
Doc wants us to ask B's dermatologist Doc Hud to be a bit more aggressive with the trouble spots, erring on the side of caution with additional biopsies.
Really, we were sort of confused when Doc S said he thought B's troubled skin was more sun damage and Squamous Cell cancer than GVH.
All along, he's referred to B's rashes as GVH, but maybe now that they are more angry looking lesions, he's thinking they could be Squamous Cell cancers.
We see Doc Hud in a few days, so we'll get on top of this asap.
B's still on the Squamous Cell Cancer fueling anti fungal Voriconazole.
We are going to give it's possible replacement, anti fungal Noxafil another try, probably this weekend, to rule out if it was a coincidence that he became ill when he first tried it about seven weeks ago.
B asked me to sneak the change on him.
He thinks if he knows he's started the Noxafil again, he might subconsciously feel sick just because it may have made him sick last time.
So, that's what I'll do, I'll keep it from him that we've started again, at least for a few days, to see how he reacts.
I sure hope he can tolerate it this time. He absolutely needs to get the heck off the (know to cause Squamous Cell cancer) Voriconazole. The amount of Squamous Cell Cancers B fights monthly is ridiculous.
B also mentioned to Doc S the issue that's going on in his mouth since the tooth extraction.
Doc doesn't want us to wait a month to see what happens, instead he'd like us to contact the oral surgeon to discuss more options for getting the breach between B's mouth and sinus closed sooner than later. So, we'll do that asap as well.
So, lot's on our plates right now, but hopefully we can get these issues addressed and solved without too much stress on B.
B's losing weight. That's not a good thing.
I believe it's tied to the tooth issues. It's hard for him to eat, so it stands to reason, it could be affecting his weight.
I'm gonna push high calorie yummy smoothies on him while we work to get his mouth fixed to hopefully stop the weight loss.
Speaking of yummy, B's got the green light to eat fresh pineapple now.
Yay!
Alkaline Phosphatase S- 109 (increase) (normal-39-117)
Ferritin- 1715 (decrease) (normal- 30-400) H
Day+ 846
Today was a Doc Schriber day.
It's been two months since we've seen him, I think the longest gap since transplant.
It was fairly routine. B's labs are all pretty good, so no issues there.
B wanted to talk about the GVH on his face and arms, which appears worse, but also hurts all the time now.
We were wondering if GVH is painful or if something else could be going on.
Doc wants us to ask B's dermatologist Doc Hud to be a bit more aggressive with the trouble spots, erring on the side of caution with additional biopsies.
Really, we were sort of confused when Doc S said he thought B's troubled skin was more sun damage and Squamous Cell cancer than GVH.
All along, he's referred to B's rashes as GVH, but maybe now that they are more angry looking lesions, he's thinking they could be Squamous Cell cancers.
We see Doc Hud in a few days, so we'll get on top of this asap.
B's still on the Squamous Cell Cancer fueling anti fungal Voriconazole.
We are going to give it's possible replacement, anti fungal Noxafil another try, probably this weekend, to rule out if it was a coincidence that he became ill when he first tried it about seven weeks ago.
B asked me to sneak the change on him.
He thinks if he knows he's started the Noxafil again, he might subconsciously feel sick just because it may have made him sick last time.
So, that's what I'll do, I'll keep it from him that we've started again, at least for a few days, to see how he reacts.
I sure hope he can tolerate it this time. He absolutely needs to get the heck off the (know to cause Squamous Cell cancer) Voriconazole. The amount of Squamous Cell Cancers B fights monthly is ridiculous.
B also mentioned to Doc S the issue that's going on in his mouth since the tooth extraction.
Doc doesn't want us to wait a month to see what happens, instead he'd like us to contact the oral surgeon to discuss more options for getting the breach between B's mouth and sinus closed sooner than later. So, we'll do that asap as well.
So, lot's on our plates right now, but hopefully we can get these issues addressed and solved without too much stress on B.
B's losing weight. That's not a good thing.
I believe it's tied to the tooth issues. It's hard for him to eat, so it stands to reason, it could be affecting his weight.
I'm gonna push high calorie yummy smoothies on him while we work to get his mouth fixed to hopefully stop the weight loss.
Speaking of yummy, B's got the green light to eat fresh pineapple now.
Yay!
Lab numbers: Labcorp (6/1)
Hemoglobin- 13.1 (decrease) (normal-12.6-17.7)
Hematocrit- 41.1% (decrease)(normal-37%-51%)
Hematocrit- 41.1% (decrease)(normal-37%-51%)
Platelets- 195 (decrease) (normal-155-379)
Neutrophils- 4.2 (increase) (normal-1.4-7.0)
White Blood Count- 6.9 (increase) (normal-3.4-10.8)
Creatinine- 1.48 (increase) (normal-0.76-1.27) H
BUN- 21 (increase) (normal 8-27)
eGFR- 49 (decrease) (normal above 59) L
eGFR- 49 (decrease) (normal above 59) L
Potassium- 4.4 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 98 (unchanged) (normal-39-117)
Ferritin- 1790 (decrease) (normal- 30-400) H
Day+ 841
Alkaline Phosphatase S- 98 (unchanged) (normal-39-117)
Ferritin- 1790 (decrease) (normal- 30-400) H
Day+ 841
B had a couple of Doc visits today.
First, he saw Doc Wood, the oral surgeon to see how the tooth extraction site was healing.
I mentioned in my last post that when the culprit tooth, an upper back molar, was extracted, it left a hole between B's mouth and sinus cavity. A rare, but not unheard of complication.
Doc Wood had packed the hole with dissolvable gauze and stitched it up, so today he wanted to remove the stitches and see if healing has begun to close the hole.
He was relatively happy with what he saw, with thankfully no infection evident, but he did say B was healing slowly. We know B's a slow healer because of the anti rejection meds he takes.
Doc wants to have another look-see in a few weeks, but for now all is well.
B's restrictions on playing his harmonica remain in force, darn it.
I love how he plays that little instrument. He's had a ton of gigs these last few weeks and I'm missing the spice it adds to a few songs in each of his bands.
B also had a regularly scheduled Phlebotomy at AZ Onc's east side location today.
It went smoothly, with no needle stick or bleeding issues at all.
Yay.
Now, if we can just see his Ferritin number drop below the 1700's someday.
The lowest he's gotten was 1702, back in late April.
Maybe next week's labs will get it in the 1600's or lower.
Still a long way off from our goal of 400, but lower is lower, and that's what we're hoping for.
Fingers crossed.
I mentioned a few post ago that B had finally seen a dentist for the first time in over 4 years.
When he was in the midst of the bone marrow cancer, Myelodysplastic Syndrome, and it's complications, he didn't dare go to the dentist.
He pretty much stayed single digits in the Platelet department for 16 months, and would have probably bled to death if he'd had to have dental work during that time. He also didn't have an immune system, so if bleeding didn't get him, an infection most certainly would have.
A few weeks ago, he broke a molar, and since he's happily now Platelet rich post transplant, he was able to finally see a dentist.
His immune system is still a bit compromised by his anti rejection steroids (but not nearly as bad as before) so Doc Schriber had him take an Amoxicillin regimen as a prophylactic just to be safe.
The dentist decided that the broken molar was too far gone to fix, so he scheduled B with an Oral Surgeon to get the broken tooth removed.
That appointment was today.
It went relatively well, but not without a few complications.
The biggest issue was that the root of the culprit tooth was long and when it was extracted, it left a hole all the way through to B's sinus cavity.
This complication occurs occasionally for folks getting an upper molar extracted and B was one of the unlucky ones to have it happen to him.
The Oral Surgeon packed the hole with dissolvable gauze and stitched it closed for the time being.
In theory, most of the time, the hole will close/heal in time, but if it doesn't, I guess they will close it surgically later. Another complication of B's anti rejection steroids is that they slow healing, so I'm hoping that won't be the case here.
We'll know more when the stitches come out in a few weeks.
In the meantime, he will take extra antibiotics to be sure he doesn't get a sinus infection.
And, he has to give up playing wind instruments for at least a month or more, so he doesn't blow the hole open as it heals.
That's a drag, because he had just started relearning Saxaphone and of course, he plays a lot of Harmonica in several of the bands he's currently in.
The Doc even wanted him to curtail his singing, but did say it was okay, in moderation.
B has several gigs next weekend, so I guess his bandmates will be picking up the slack.
The second issue is that the Oral Surgeon dislodged two crowns, one on either side of the extracted tooth and had to temporarily re-glue them until B's dentist can permanently re-glue them. They aren't seated quite right, so B's chewing has been affected.
He's on a soft diet for the next few days because of the surgery, but when he finally starts eating regular food again, this is going to be an issue.
I'll try to get him into Doc Allen first thing next week to get these crowns reseated properly.
It's been quite a week so far.
Lots of doctor appointments.
Looking forward to a break from Docs soon.
Update 5/26- So far, B's doing okay post oral surgery.
No infection, no swelling, no bleeding and he hasn't accidentally swallowed either of the two temporarily re-glued crowns.
I did get him into Doc Allen today but he couldn't unseat the temporarily glued crowns to reseat them properly. He was afraid he'd break the crowns or the supporting tooth trying to get them off, so he decided to leave them as they are.
I was surprised he didn't at least try to correct B's bite with a bit of sculpting.
B goes back in a few weeks, and if he's having difficult eating, I'll talk to the dentist.
MAY 20. 2015- Wednesday
Used lab work from 5/11 for this visit.
IVIg
Day +826
Today was a Doc Chen day.
She looked him over and thought he looked well.
He didn't have any new issues to go over with her, just the standard post transplant stuff that the Docs keep track of.
He also had his monthly IViG treatment today.
This is done to boost his immune system to help him fight potential infections.
These monthly treatments have become routine and today's was no different.
It went well, with no issues.
Glad he's got the extra immune system boost on board because tomorrow B has oral surgery to remove a broken molar.
MAY 19. 2015- Tuesday
B had his regularly scheduled Pentamidine treatment today at Tucson Medical Center.
It went well with no issues.
B queried the tech about why the treatments done here locally seem less strong than the ones he used to get at Scottsdale Shea Hospital.
The tech said he's following all the guidelines, and using the appropriate equipment, so he can't answer why it seems different.
I guess we have to have faith that it's being done correctly.
We like getting it done locally, if for no other reason, we can sleep in an extra hour on our monthly Doc Schriber Scottsdale visits now.
We are not morning people, so that extra hour of shut eye is much appreciated.
MAY 18. 2015- Monday
B saw his dermatologist, Doc Hud, today.
Once again he biopsied suspicious growths, 5 in total this time.
One on the top of B's head, two on his cheeks and two on his forearms.
It's really difficult, even for Doc Hud's trained eyes, to discern the difference between the acute Graft vs. Host disease that B has on his face and arms and Squamous Cell skin cancers, so Doc usually will error on the side of caution and biopsy stuff he's not sure of.
We see Doc Hud every 4 weeks or so and almost every visit, at least one of the biopsies he does, tests positive for Squamous Cell cancer.
Update: 5/26- Doc Hud's office called and said that of the 5 areas biopsied, 2 were Squamous Cell and the others were non cancerous AK. The SC was on his arm and the top of his head. Surprisingly, his cheeks were not Squamous Cell involved this time.
B is supposed to talk to Doc Schriber next month about giving the new anti fungal drug Noxafil another try since his current anti fungal drug, Voriconazole, is flagged as a known cause of Squamous Cell cancer.
B tried Noxafil last month and became ill within a day of starting it.
To rule out a coincidence occurrence with the start of the new drug and his becoming unwell, we will give it another try again next month.
Hopefully, he can make the switch, and maybe, once off the Voriconazole, he will start to see a decrease in incidence of Squamous Cell cancers on his face and arms.
Fingers crossed.
MAY 13. 2015- Wednesday
Lab numbers: Labcorp (5/11)
Hemoglobin- 13.2 (increase) (normal-12.6-17.7)
Hematocrit- 41.4% (increase)(normal-37%-51%)
Hematocrit- 41.4% (increase)(normal-37%-51%)
Platelets- 198 (increase) (normal-155-379)
Neutrophils- 3.9 (unchanged) (normal-1.4-7.0)
White Blood Count- 6.5 (decrease) (normal-3.4-10.8)
Creatinine- 1.40 (increase) (normal-0.76-1.27) H
BUN- 18 (increase) (normal 8-27)
eGFR- 52 (decrease) (normal above 59) L
eGFR- 52 (decrease) (normal above 59) L
Potassium- 4.3 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 98 (decrease) (normal-39-117)
Ferritin- 1805 (increase) (normal- 30-400) H
T shot
Day+ 819
B had Phlebotomy today at the east side Az Oncology office.
It went well, with no issues.
Because he was feeling poorly two weeks ago, we had to cancel his last Phlebotomy.
His darn Ferritin level rose again, but it is what it is.
Most of his labs remain stable, with nothing seemingly too far out of whack.
B broke a tooth a few weeks ago.
Getting him reestablished with regular dental visits has been on our list of things-to-do, but probably because of doctor-appointment-overload and the fact that B's longtime regular dentist retired a year ago, we just hadn't gotten around to it.
The broken tooth made it time to bite the bullet.
We found a dentist that was recommended by a few friends and he seems to be okay.
He saw the dentist, Doc Allen last Wednesday, 5/6.
Considering how long it's been since B's seen a dentist (4+ years), he had a pretty good visit.
Besides the recent broken tooth, he only had 3 small cavities.
That's pretty darn good because chemotherapy is really hard on the teeth.
He was also reminded of a broken crown that occurred a few years ago when he was riding the lifesaving transfusion train. When that crown broke, he couldn't go to the dentist because his platelet count was almost always single digits, making him a huge bleed risk. Since the broken crown didn't bother him, it was decided at the time that it was the least of his worries and wasn't worth the risk to fix it.
That crown is now scheduled to be replaced soon.
The dentist can't save the broken tooth, so he will have that extracted by a specialist next week.
It's a back molar, and he still has all his other molars, so losing it shouldn't affect him too badly.
Both the new dentist and the oral surgeon have been especially mindful of B's health issues, and seem to be making good decisions with how to proceed.
So, B's getting his mouth in order.
We're so glad he's finally getting his teeth and mouth maintenance back on track.
Check that off the list. Yay.
Alkaline Phosphatase S- 98 (decrease) (normal-39-117)
Ferritin- 1805 (increase) (normal- 30-400) H
T shot
Day+ 819
B had Phlebotomy today at the east side Az Oncology office.
It went well, with no issues.
Because he was feeling poorly two weeks ago, we had to cancel his last Phlebotomy.
His darn Ferritin level rose again, but it is what it is.
Most of his labs remain stable, with nothing seemingly too far out of whack.
B broke a tooth a few weeks ago.
Getting him reestablished with regular dental visits has been on our list of things-to-do, but probably because of doctor-appointment-overload and the fact that B's longtime regular dentist retired a year ago, we just hadn't gotten around to it.
The broken tooth made it time to bite the bullet.
We found a dentist that was recommended by a few friends and he seems to be okay.
He saw the dentist, Doc Allen last Wednesday, 5/6.
Considering how long it's been since B's seen a dentist (4+ years), he had a pretty good visit.
Besides the recent broken tooth, he only had 3 small cavities.
That's pretty darn good because chemotherapy is really hard on the teeth.
He was also reminded of a broken crown that occurred a few years ago when he was riding the lifesaving transfusion train. When that crown broke, he couldn't go to the dentist because his platelet count was almost always single digits, making him a huge bleed risk. Since the broken crown didn't bother him, it was decided at the time that it was the least of his worries and wasn't worth the risk to fix it.
That crown is now scheduled to be replaced soon.
The dentist can't save the broken tooth, so he will have that extracted by a specialist next week.
It's a back molar, and he still has all his other molars, so losing it shouldn't affect him too badly.
Both the new dentist and the oral surgeon have been especially mindful of B's health issues, and seem to be making good decisions with how to proceed.
So, B's getting his mouth in order.
We're so glad he's finally getting his teeth and mouth maintenance back on track.
Check that off the list. Yay.
Today I called Merck, the makers of Noxafil, to see if their pharmacist could tell me wether or not Noxafil amplifies Fentanyl.
I also spent many hours online searching for interactions between Noxafil and Fentanyl, and I talked to our Scottsdale transplant team who had also queried their pharmacists.
All of these investigations led to the probable conclusion that Noxafil is indeed similar to Voriconazole in the amplification of Fentanyl.
So my theory about B experiencing a withdrawal of sorts initially with the change in meds is probably incorrect.
In my searches, I discovered that Noxafil can cause increased musculoskeletal pain, increased fatigue, and even anxiety.
I'm pretty sure increased pain and fatigue could make one melancholy, so, perhaps it was the Noxafil after all that started him feeling worse within a day of starting it.
Then, when we called the Doc on Monday to let him know that B had become unwell, he had him stop taking the Noxafil and also told us to hold off restarting the Voriconazole.
So not being on either anti fungal med these last 4 days is probably why he seems to be experiencing the symptoms of narcotic withdrawal. He's had neither of these Fentanyl amplifiers onboard since Monday.
So maybe, he's been hit with a one-two punch.
Started out as one thing and morphed into another.
I am still waiting on a call from Doc Chen, who may have more insight about what could be going on.
Update-5/2- Doc Chen called yesterday and agreed with all of my theories. I restarted him on the Voriconazole yesterday morning and he seems a bit better today, although he's still not back to his 'normal' self.
But a bit better, is better than worse, so we'll take that for today.
Not sure what the Docs will have us do once the dust settles.
He has to be on an anti fungal so we'll see what they decide.
Maybe they will have him start the Noxafil again to see if he worsens again.
Or maybe, he'll have just have to resume Voriconazole with it's risks.
Hope we get this figured out soon.
APRIL 29. 2015- Wednesday
Lab numbers: Labcorp (4/27)
Hemoglobin- 12.4 (decrease) (normal-12.6-17.7)
Hematocrit- 38.5% (decrease)(normal-37%-51%)
Hematocrit- 38.5% (decrease)(normal-37%-51%)
Platelets- 197 (decrease) (normal-155-379)
Neutrophils- 3.9 (decrease) (normal-1.4-7.0)
White Blood Count- 6.8 (unchanged) (normal-3.4-10.8)
Creatinine- 1.36 (increase) (normal-0.76-1.27) H
BUN- 17 (increase) (normal 8-27)
eGFR- 54 (decrease) (normal above 59) L
eGFR- 54 (decrease) (normal above 59) L
Potassium- 4.2 (decrease) (normal 3.5-5.2)
Alkaline Phosphatase S- 100 (increase) (normal-39-117)
Ferritin- 1702 (decrease) (normal- 30-400) H
Day+ 805
Alkaline Phosphatase S- 100 (increase) (normal-39-117)
Ferritin- 1702 (decrease) (normal- 30-400) H
Day+ 805
Last Thursday, the 23rd, B started a new anti fungal drug, Noxafil.
The anti fungal drug he’s been taking for a few years, Voriconazole, has a nasty side effect where it can cause Squamous Cell cancers.
I’ve been reporting about how B’s been fighting wave upon wave of Squamous Cell cancers on his face and arms for many, many months now.
He sees his skin Doc every 4 weeks to stay on top of this Squamous Cell storm he’s caught in.
Doc Schriber decided it was time B should try a different anti fungal drug to see if it would help stop the Squamous Cell issues.
So, after jumping through some insurance/financial hoops (the new drug is EXPENSIVE, even after insurance) he started his new anti fungal drug, Noxafil, last Thursday.
Within a day, B started to feel yukky.
More pain, more fatigue and the melancholy returned.
In fact, his personality changed perceptively. Along with the melancholy, he started to lose his temper easily, which is NOT like him at all.
He’s usually a very calm, mellow guy.
In the 30 years I’ve known him I have rarely seen him lose his temper.
So, after a few days of this weird new B, I called our Scottsdale transplant team yesterday to see if they thought it might be a reaction to the new drug.
Noxafil doesn’t list emotional distress as a side effect, but who knows, maybe it was exacerbating something.
Because of the timing of the new symptoms lining up with starting this new med, Scottsdale said stop taking the Noxafil for a few days to see if he started to feel better. In fact, they didn’t want him to take any anti fungal for a few days.
So, after taking Noxafil for just 5 days, we stopped it on Monday afternoon.
After 2 days of being off the Noxafil, he’s still no better.
I have a theory on what might be wrong, and I’ve called the Scottsdale team to see if they agree.
I haven’t heard back from them yet.
Here’s my theory-
B wears a Fentanyl pain patch. He’s worn it for years to help fight the debilitating pain of his neuropathy, his 2 broken backs and his Avascular Necrosis.
I thought I remembered that when he first started taking Voriconazole a few years ago, Doc Chen reduced the strength of the Fentanyl patch because
Voriconazole causes an amplification of Fentanyl’s strength.
I don't know if Noxafil has the same amplification effect.
If it doesn't, I’m thinking that without the Voriconazole amplifying the Fentanyl, he might actually have started to experience a narcotic withdrawal effect last Thursday.
Maybe it's not what the new drug is doing, but what it's not doing.
Maybe it's not amplifying the narcotic likes it's predecessor Voriconazole.
I think this theory fits.
The increased pain, the personality change, the melancholy, the fatigue.
I sure hope I hear back from the Docs soon to see if I’m on the right track.
It’s killing me to see him so weak and miserable.
He’d been doing so good for the last few months, and I want to see him get back to feeling good again.
Today he was supposed to have a regularly schedule phlebotomy, but he just felt too yukky to get it done.
He’s had to cancel one music rehearsal this week and barely made it through one he had last night.
When he’s too sick for his music, you know something’s not right.
Thankfully his labs don’t look bad, so it's not his kidneys or liver going haywire.
But something's not right and we need to get this figured out sooner than later.
Hopefully my next update will have good news.
APRIL 21. 2015- Tuesday
B had his monthly Pentamidine treatment today at TMC's respiratory dept.
Since transplant, B has had this treatment done monthly during our Scottsdale visits to Doc Schriber.
Because he has to have this treatment monthly, and someday we'd like to add an extra week or two in between visits with Doc Schriber, we decided to start having this treatment done locally so we can keep it properly spaced.
He had it done last month at TMC for the first time on March 24th.
Both visits have gone smoothly, although B has noticed that the treatments done here locally seem different. Not as yukky tasting as the ones done in Scottsdale.
He has always needed gum and a flavored drink right after treatment to get the nasty taste out of his mouth, but that's not been the case with the first two treatments done here.
While he's happy the yukky taste is gone, he questions wether the guys here are administering the Pentamidine correctly. So I'm going to look into this next week with our post transplant coordinator.
This treatment is very important to insure he doesn't get a post transplant complication in his lungs, especially since his original cancer was in his lung, and left that lung compromised and weak.
In the meantime, doing Pentamidine locally has added an extra hour of sleeping in time on our Scottsdale visit days.
Since neither B or I are morning people, we are digging the change.
APRIL 15. 2015- Wednesday
B had a phlebotomy today at the eastside location of Az Oncology.
They used the labs from 4/6, which were within the correct parameters for phlebotomy.
He also had had his monthly IViG treatment and T shot done there as well.
We normally do the IViG and T shot at the westside location, but since we are trying to skip seeing Doc Chen every other month, we will do these treatments eastside as well.
We weren't sure the if they could do phlebotomy and IViG procedures on the same day.
One involves taking blood out, the other putting a blood product in.
Common sense says take the blood out first, then do the infusion second.
The problem that could have presented, is that doing phlebotomy early in the day can lead to weakness and possible fainting. They take quite a bit of blood out, a whole pint I think.
This is why all the clinics only schedule phlebotomy in the late afternoons, so the nurses can give the patient their full attention during the 10-15 minutes it takes for that procedure.
The IViG infusion takes 4 hours, so phlebotomy has to be done earlier in the day to allow for time needed for IVig.
The eastside nurses handled both procedures well with no issues, and B didn't have any adverse reactions to either.
APRIL 8. 2015- Wednesday
Lab numbers: Labcorp (4/6)
Hemoglobin- 13.1 (increase) (normal-12.6-17.7)
Hematocrit- 40.6% (increase)(normal-37%-51%)
Hematocrit- 40.6% (increase)(normal-37%-51%)
Platelets- 224 (increase) (normal-155-379)
Neutrophils- 4.3 (increase) (normal-1.4-7.0)
White Blood Count- 6.8 (increase) (normal-3.4-10.8)
Creatinine- 1.26 (decrease) (normal-0.76-1.27) Normal!
BUN- 15 (decrease) (normal 8-27)
eGFR- 59 (increase) (normal above 59) L (One number from Normal)
eGFR- 59 (increase) (normal above 59) L (One number from Normal)
Potassium- 3.8 (decrease) (normal 3.5-5.2)
Alkaline Phosphatase S- 95 (decrease) (normal-39-117)
Ferritin- 1743 (decrease) (normal- 30-400) H
Day+ 784
Today we saw Doc Scriber and his team.
It was an amazing visit.
As always, it's a treat to see old friends who took such wonderful care of B during his transplant. These nurses and Docs rock! Just saying.
And B had some really stellar labs!
His kidney numbers are finally normal!!
Normal!!!
After experiencing kidney failure in the first few weeks after transplant, his kidneys are now functioning better than even before transplant.
Also, his Ferritin dropped 266 points with last week's phlebotomy and is at one of his lowest numbers in a few years.
In my March 30th post I mentioned that B had been riding a 'feeling good' wave for about two weeks. He continues to surf that wave, adding a few more weeks, making it over a whole month that he's had many more good hours than bad.
I can say that he even looks better.
That adorable BC twinkle is back in his eyes.
Our schedule so far this year has been crazy busy, with tons of music rehearsals, gigs and parties and so far, B has been able to do it all, without crashing.
I'm reminded of not too long ago when one or two things a week on our calendar would wipe him out physically and he'd need days and days of recoup time.
I can honestly say (knock wood), that after many, many months of worrying that he had plateaued at a not-so-good place, he has taken a solid step up towards better health.
We are being smart about making sure he gets solid rest in between each event, but his recoup time has lessened considerably.
We are hoping that this will be a new normal for him.
An almost normal that has him enjoying life to the fullest.
He's even playing acoustic and lead guitar again.
Everyday I hear the sounds and songs I used to hear before cancer and transplant.
Familiar music wafting through our home, as B noodles on his guitar, searching for and finding lost chords and leads.
He is my inspiration, my treasure, and I cannot put into words how much he is adored.
Not just by me, but by almost all who have the pleasure of knowing him.
Alkaline Phosphatase S- 95 (decrease) (normal-39-117)
Ferritin- 1743 (decrease) (normal- 30-400) H
Day+ 784
Today we saw Doc Scriber and his team.
It was an amazing visit.
As always, it's a treat to see old friends who took such wonderful care of B during his transplant. These nurses and Docs rock! Just saying.
And B had some really stellar labs!
His kidney numbers are finally normal!!
Normal!!!
After experiencing kidney failure in the first few weeks after transplant, his kidneys are now functioning better than even before transplant.
Also, his Ferritin dropped 266 points with last week's phlebotomy and is at one of his lowest numbers in a few years.
In my March 30th post I mentioned that B had been riding a 'feeling good' wave for about two weeks. He continues to surf that wave, adding a few more weeks, making it over a whole month that he's had many more good hours than bad.
I can say that he even looks better.
That adorable BC twinkle is back in his eyes.
Our schedule so far this year has been crazy busy, with tons of music rehearsals, gigs and parties and so far, B has been able to do it all, without crashing.
I'm reminded of not too long ago when one or two things a week on our calendar would wipe him out physically and he'd need days and days of recoup time.
I can honestly say (knock wood), that after many, many months of worrying that he had plateaued at a not-so-good place, he has taken a solid step up towards better health.
We are being smart about making sure he gets solid rest in between each event, but his recoup time has lessened considerably.
We are hoping that this will be a new normal for him.
An almost normal that has him enjoying life to the fullest.
He's even playing acoustic and lead guitar again.
Everyday I hear the sounds and songs I used to hear before cancer and transplant.
Familiar music wafting through our home, as B noodles on his guitar, searching for and finding lost chords and leads.
He is my inspiration, my treasure, and I cannot put into words how much he is adored.
Not just by me, but by almost all who have the pleasure of knowing him.
Day +778
B had a phlebotomy today.
It was routine, with no issues.
MARCH 30. 2015- Monday
Day +775
Today was B's visit with his cardiologist, Dr.Faitelson.
In my last post I mentioned we were still not sure if the results of an echocardiogram that B had done in September was old news or new news. It showed Stage Two Diastolic Dysfunction. We'd queried Doc F several times via phone messages to let us know if the results of the September echo (vs the one done six months earlier in March 2014) showed new disease, but never got a response.
I wasn't sure why, but was hoping it was because Doc F wasn't concerned with the Sept echo.
Well, turns out, that was the case.
B's heart issues have not worsened. Doc looked back over many of B's past echoes and found that B's had a 'stiff' heart muscle (Doc F's description of Diastolic Dysfunction) since at least 2010. Which means he's had this for a while and Doc doesn't think the elevated Ferritin levels are causing further disease.
The Sept echo also showed increased right side pressure in his heart, but Doc has seen that result before too.
And B's valve leakage hasn't gotten worse.
Doc says B is metastable.
Which means, stable for now.
B, as usual, had a clever comeback when Doc used the 'stiff' heart description.
"Now I know why everyone thinks I'm such a hard hearted guy".
Which of course, no one thinks he is, but he's got a way with quick one liners.
He makes all of us laugh. A lot.
We also got results today from Doc Adler regarding a Peripheral Artery Disease test B had done in mid February 2015.
The test was done to help rule out stuff that could be causing B's neuropathy in his feet and legs.
Happily, the test was negative for PAD disease, showing no decreased blood flow to either B's legs or feet.
So we had a good news day. Yay.
I was going to brag about how B's had almost two whole weeks of feeling better than normal, but today he woke up with a sore throat.
Hmmm.
But, sore throat aside, it seems he has taken a step in the right direction lately.
Not sure why, but we're pleased as punch he's been a bit stronger.
We'll get this sore throat stuff sorted out and hopefully he'll continue to have more good days than bad.
Update 4/1- B's sore throat was gone the next morning.
Probably allergies.
Anyhoo, on to good days ahead, filled with friends and music.
Gotta believe!
MARCH 18. 2015- Wednesday
Lab numbers: Labcorp (3/16)
Hemoglobin- 12.6 (decrease) (normal-12.6-17.7)
Hematocrit- 39.8% (decrease)(normal-37%-51%)
Hematocrit- 39.8% (decrease)(normal-37%-51%)
Platelets- 214 (increase) (normal-155-379)
Neutrophils- 3.6 (decrease) (normal-1.4-7.0)
White Blood Count- 6.4 (decrease) (normal-3.4-10.8)
Creatinine- 1.38 (increase) (normal-0.76-1.27) H
BUN- 20 (increase) (normal 8-27)
eGFR- 53 (decrease) (normal above 59) L
eGFR- 53 (decrease) (normal above 59) L
Potassium- 4.0 (unchanged) (normal 3.5-5.2)
Alkaline Phosphatase S- 106 (increase) (normal-39-117)
Ferritin- 2009 (decrease) (normal- 30-400) H
TSH- 3.450 (normal 0.450-4.500)
T4,Free- 1.32 (normal 0.82-1.77)
Triiodothyronine, Free Serum- 3.1 (normal 2.0-4.4)
IviG
T shot
Day+ 763
I was reading some of the last few months posts and realized two things.
First- I need to answer various questions I've raised along the way as to why B has been feeling yukky for quite some time.
Such as, the results of B's thyroid labs I asked Doc Chen to do a few months ago.
His thyroid is normal, so it's probably not the cause of B's fatigue and melancholy.
He also had blood work done a few months ago to see if he might be diabetic. Doc wanted to rule out Diabetes as a contributor of B's neuropathy. The results of those labs were negative.
No Diabetes. Yay.
Also, the week after next we see B's cardiologist, Doc Faitelson.
I'm a bit nervous about this visit as B hasn't seen him in a year (stupid insurance issues).
I'd mentioned in previous updates that I'd placed many calls to Doc F's office to ask him, as a courtesy, to compare the September echo that Doc Chen had ordered, with one he had done last March. Doc Chen said the Sept echo showed Stage Two Diastolic Dysfunction.
I mostly wanted to know from Doc F if the S2DD was new news or something B's had for a while.
We never got an answer.
Perhaps there were insurance implications (since technically he was not B's Doc at the time) so he couldn't return the call or maybe he never got the messages or maybe it's not new news and he wasn't concerned, but whatever it was, we still do not know if the echoes were similar or if the S2DD is new news.
Nor have we had a cardiologist explain the physical implications of this disease to us.
Is this the main cause of his fatigue?
In two weeks we find out and, gulp, if it's bad news I'm not sure B's psyche can handle bad news right now.
Our search for answers remains ongoing as to what's behind B's fatigue and melancholy.
It does seem that increasing B's Prednisone last month has helped him a bit, both mentally and physically, but he's still got a ways to go to feel good.
Two- These updates are really quite dry. But I guess that's the nature of the beast with medical updates. I'd like to find ways to make the Journey more entertaining to read, but really, it's a lot of medical gobbledegook, and well, it is what it is.
That being said, here's the latest.
Today was a Doc Chen visit, but we saw her NP Mary instead.
Really, as I've said before, these Doc Chen visits are more about scheduling labs and phlebotomies and getting B his monthly IViG treatment, than about actually seeing the Doc.
She or Mary do look him over quickly, but it's pretty routine.
Most of B's labs were pretty darned good.
We did ask Mary why B's IgG (immunoglobulins) levels are low and the answer is... Predinisone.
Yep, the Evil (side effects) Drug.
The one I had to increase last month to make B feel like he wasn't dying.
Damned if you do and damned if you don't.
I have to say, he has been feeling much better since the increase, so it looks like we will just have to treat Prednisone's side effects as they arise.
So, it looks like monthly IViG treatments are probably gonna be the norm as long as he has to take Prednisone.
IgG levels indicate how strong your immune system is and when the levels are down, it makes you susceptible to getting sick. Getting a monthly IvIG treatment helps B's immune system be stronger, although even with the treatment, his levels still fall below or at the low end of the normal spectrum of immunoglobulins.
B is sick of doctor visits and sick of labs.
He thinks if he can get a week or two each month without seeing a doc or getting a needle stuck in him, his state of mind will improve.
So, he asked Mary if we could skip a month seeing Doc Chen.
She's gonna let him give it a go so no Doc Chen next month. Yay!
He will still have to get IviG done, but we can do that close to home, at the eastside location of Az Oncology and schedule it in a way that gives B that Doc free week he's hoping for.
Alkaline Phosphatase S- 106 (increase) (normal-39-117)
Ferritin- 2009 (decrease) (normal- 30-400) H
TSH- 3.450 (normal 0.450-4.500)
T4,Free- 1.32 (normal 0.82-1.77)
Triiodothyronine, Free Serum- 3.1 (normal 2.0-4.4)
IviG
T shot
Day+ 763
I was reading some of the last few months posts and realized two things.
First- I need to answer various questions I've raised along the way as to why B has been feeling yukky for quite some time.
Such as, the results of B's thyroid labs I asked Doc Chen to do a few months ago.
His thyroid is normal, so it's probably not the cause of B's fatigue and melancholy.
He also had blood work done a few months ago to see if he might be diabetic. Doc wanted to rule out Diabetes as a contributor of B's neuropathy. The results of those labs were negative.
No Diabetes. Yay.
Also, the week after next we see B's cardiologist, Doc Faitelson.
I'm a bit nervous about this visit as B hasn't seen him in a year (stupid insurance issues).
I'd mentioned in previous updates that I'd placed many calls to Doc F's office to ask him, as a courtesy, to compare the September echo that Doc Chen had ordered, with one he had done last March. Doc Chen said the Sept echo showed Stage Two Diastolic Dysfunction.
I mostly wanted to know from Doc F if the S2DD was new news or something B's had for a while.
We never got an answer.
Perhaps there were insurance implications (since technically he was not B's Doc at the time) so he couldn't return the call or maybe he never got the messages or maybe it's not new news and he wasn't concerned, but whatever it was, we still do not know if the echoes were similar or if the S2DD is new news.
Nor have we had a cardiologist explain the physical implications of this disease to us.
Is this the main cause of his fatigue?
In two weeks we find out and, gulp, if it's bad news I'm not sure B's psyche can handle bad news right now.
Our search for answers remains ongoing as to what's behind B's fatigue and melancholy.
It does seem that increasing B's Prednisone last month has helped him a bit, both mentally and physically, but he's still got a ways to go to feel good.
Two- These updates are really quite dry. But I guess that's the nature of the beast with medical updates. I'd like to find ways to make the Journey more entertaining to read, but really, it's a lot of medical gobbledegook, and well, it is what it is.
That being said, here's the latest.
Today was a Doc Chen visit, but we saw her NP Mary instead.
Really, as I've said before, these Doc Chen visits are more about scheduling labs and phlebotomies and getting B his monthly IViG treatment, than about actually seeing the Doc.
She or Mary do look him over quickly, but it's pretty routine.
Most of B's labs were pretty darned good.
We did ask Mary why B's IgG (immunoglobulins) levels are low and the answer is... Predinisone.
Yep, the Evil (side effects) Drug.
The one I had to increase last month to make B feel like he wasn't dying.
Damned if you do and damned if you don't.
I have to say, he has been feeling much better since the increase, so it looks like we will just have to treat Prednisone's side effects as they arise.
So, it looks like monthly IViG treatments are probably gonna be the norm as long as he has to take Prednisone.
IgG levels indicate how strong your immune system is and when the levels are down, it makes you susceptible to getting sick. Getting a monthly IvIG treatment helps B's immune system be stronger, although even with the treatment, his levels still fall below or at the low end of the normal spectrum of immunoglobulins.
B is sick of doctor visits and sick of labs.
He thinks if he can get a week or two each month without seeing a doc or getting a needle stuck in him, his state of mind will improve.
So, he asked Mary if we could skip a month seeing Doc Chen.
She's gonna let him give it a go so no Doc Chen next month. Yay!
He will still have to get IviG done, but we can do that close to home, at the eastside location of Az Oncology and schedule it in a way that gives B that Doc free week he's hoping for.
B had phlebotomy today.
It went well, with no issues.
MARCH 5. 2015- Thursday
Lab numbers: Labcorp (3/2)
Hemoglobin- 13.8 (increase) (normal-12.6-17.7)
Hematocrit- 42.1% (increase)(normal-37%-51%)
Hematocrit- 42.1% (increase)(normal-37%-51%)
Platelets- 185 (decrease) (normal-155-379)
Neutrophils- 3.7 (increase) (normal-1.4-7.0)
White Blood Count- 6.7 (increase) (normal-3.4-10.8)
Creatinine- 1.32 (decrease) (normal-0.76-1.27) H
BUN- 17 (decrease) (normal 8-27)
eGFR- 56 (decrease) (normal above 59) L
eGFR- 56 (decrease) (normal above 59) L
Potassium- 4.0 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 103 (decrease) (normal-39-117)
Ferritin- 2120 (increase) (normal- 30-400) H
TSH- 4.410 (normal 0.450-4.500)
T4,Free- 1.29 (normal 0.82-1.77)
Triiodothyronine, Free Serum- 2.8 (normal 2.0-4.4)
Day+ 750
Today was our monthly Doc Schriber visit.
I let him know I'd increased B's Prednisone 9 days ago and that it had a significant effect on how B felt. He said I'd made the right call, saying sometimes it just takes a whiff of this medicine to make a big difference.
B told Doc that, while he wasn't a fellow who normally gets depressed, he was very depressed before we increased the Prednisone, in fact he thought he was slowly dying, he felt so bad.
I knew he hadn't been right these last 6 weeks or so, but he didn't let on just how bad he was actually feeling. After all he's been through, he still rarely complains, so I have to be vigilant for signs that something's not right. And even when questioned, he still don't always give me a clear picture of how he's doing. He's a tough one for sure. In more ways than one.
So glad he's better now.
I was worried that with the increase in Prednisone, Doc was gonna take away his lettuce and tomatoes again, but he's cool with him continuing to have them if I do the home washed thing.
Labs were okay this week, although his Ferritin once again went up.
I think it's going to be a long time before we can get that number back in the normal range, if ever.
He's got a double whammy to overcome. Not only does he have Transfusional Iron Overload (from the 16 months of weekly transfusions to stay alive before transplant), he has hereditary Hemochromatosis, which causes one to store iron.
These last few months, he's only been doing once monthly phlebotomies, instead of bi monthly, so maybe that's why it went up again.
Good news this week is these were the best kidney labs he's had since before transplant.
Dang near normal. Actually, that's great news.
B continues to have issues with Squamous Cell cancers on his face, although they do seem to be decreasing in frequency a bit. One of his meds (Voriconozole) can make him prone to these fellows, so we are going to change to a different drug (Posaconozole) to see if that will help reduce these reoccurrences as time goes by.
It was an easy trip to Scottsdale this time, with less traffic than usual and everyone playing nicely on the freeway.
Feeling grateful this evening, for so many things, but especially for having my old B back.
I am his mirror, so when he's feeling funky, I do too.
I much prefer happy to funky.
Who wouldn't?
Alkaline Phosphatase S- 103 (decrease) (normal-39-117)
Ferritin- 2120 (increase) (normal- 30-400) H
TSH- 4.410 (normal 0.450-4.500)
T4,Free- 1.29 (normal 0.82-1.77)
Triiodothyronine, Free Serum- 2.8 (normal 2.0-4.4)
Day+ 750
Today was our monthly Doc Schriber visit.
I let him know I'd increased B's Prednisone 9 days ago and that it had a significant effect on how B felt. He said I'd made the right call, saying sometimes it just takes a whiff of this medicine to make a big difference.
B told Doc that, while he wasn't a fellow who normally gets depressed, he was very depressed before we increased the Prednisone, in fact he thought he was slowly dying, he felt so bad.
I knew he hadn't been right these last 6 weeks or so, but he didn't let on just how bad he was actually feeling. After all he's been through, he still rarely complains, so I have to be vigilant for signs that something's not right. And even when questioned, he still don't always give me a clear picture of how he's doing. He's a tough one for sure. In more ways than one.
So glad he's better now.
I was worried that with the increase in Prednisone, Doc was gonna take away his lettuce and tomatoes again, but he's cool with him continuing to have them if I do the home washed thing.
Labs were okay this week, although his Ferritin once again went up.
I think it's going to be a long time before we can get that number back in the normal range, if ever.
He's got a double whammy to overcome. Not only does he have Transfusional Iron Overload (from the 16 months of weekly transfusions to stay alive before transplant), he has hereditary Hemochromatosis, which causes one to store iron.
These last few months, he's only been doing once monthly phlebotomies, instead of bi monthly, so maybe that's why it went up again.
Good news this week is these were the best kidney labs he's had since before transplant.
Dang near normal. Actually, that's great news.
B continues to have issues with Squamous Cell cancers on his face, although they do seem to be decreasing in frequency a bit. One of his meds (Voriconozole) can make him prone to these fellows, so we are going to change to a different drug (Posaconozole) to see if that will help reduce these reoccurrences as time goes by.
It was an easy trip to Scottsdale this time, with less traffic than usual and everyone playing nicely on the freeway.
Feeling grateful this evening, for so many things, but especially for having my old B back.
I am his mirror, so when he's feeling funky, I do too.
I much prefer happy to funky.
Who wouldn't?
Today was B's birthday.
And he had a splendid day.
Tuesday of this week (2/24), I went ahead and upped B's Prednisone back to his January dose.
And, within two days, he was feeling much better.
It surprises me that such a small amount of Prednisone would have such a big effect, but he's definitely feeling better.
Yay!
FEBRUARY 18. 2015- Wednesday
Lab numbers: Labcorp (2/16)
Hemoglobin- 12.7 (decrease) (normal-12.6-17.7)
Hematocrit- 39.9% (decrease)(normal-37%-51%)
Hematocrit- 39.9% (decrease)(normal-37%-51%)
Platelets- 188 (increase) (normal-155-379)
Neutrophils- 3.4 (decrease) (normal-1.4-7.0)
White Blood Count- 6.0 (decrease) (normal-3.4-10.8)
Creatinine- 1.43 (unchanged) (normal-0.76-1.27) H
BUN- 18 (increase) (normal 8-27)
eGFR- 51 (unchanged) (normal above 59) L
eGFR- 51 (unchanged) (normal above 59) L
Potassium- 3.9 (decrease) (normal 3.5-5.2)
Alkaline Phosphatase S- 104 (increase) (normal-39-117)
Ferritin- 1979 (decrease) (normal- 30-400) H
IViG
T shot
Day+ 735
A Doc Chen day.
Good labs.
And his 2/11 phlebotomy seems to have finally gotten his Ferritin below the 2000 mark! Yay!
Seems like these phlebotomies get his number to drop 50-100 points each time.
At this rate, with two phlebotomies a month, he may break the 1000 mark by summer.
That's the good news.
The bad news is that B continues to struggle with feeling yukky most of the time.
His pain and fatigue are constant.
But he keeps on keeping on, willing himself through what each day presents.
I've been making him take small walks daily, hoping that moving will help a bit with his fatigue and his mental state. He continues to be sad and it's so unlike him.
I'm thinking that maybe he needs to increase his Prednisone back to his January levels.
It seems the last reduction has really affected him in a bad way.
One thing I thought of that could also cause fatigue is his thyroid. I read that post transplant patients can develop thyroid issues so I asked Doc Chen to check his thyroid levels on his next set of labs. She added this test to his lab requisition.
Our Docs are very good at listening and have a wonderful willingness to work with us.
We sure appreciate that.
Update 3/5- B's thyroid labs were all normal, so his thyroid is not the issue with his fatigue.
Doc Chen believes a good portion of his fatigue is tied to his sleep apnea and wants us to get him fitted for the CPAP mask as soon as possible.
We've been told many times that fatigue is a very common complaint among post transplantees.
I think his fatigue is tied to a little bit of everything.
His sleep apnea, his Stage 2 Diastolic Dysfunction heart issue, his Prednisone reduction, his sedentary state and being a transplant patient could all be contributing to the fatigue.
Knowing what's causing it is one thing, but getting the treatable things treated is another.
I just know, we need to find a way to make him feel better, and we need to do it soon.
So, I guess I'm gonna nudge him a bit more to at least try the CPAP.
And perhaps, it's time to increase the Prednisone back to where it was a few months ago.
And, I need to keep him moving more and more each day.
I'm hoping we get it figured out sooner than later.
It hurts to see him so sick and tired.
Doc Chen also noticed that one of last Friday's squamous cell biopsy sites seemed to have an significant area of puffy redness around it that could indicate infection or cellulitis, so she put him on an antibiotic for 10 days.
Here's to better days ahead soon.
FEBRUARY 16. 2015- Monday
B had his final series of childhood vaccinations today at Doc Adler's.
Transplantees are like newborns, with no immune antibodies, so at about a year out from transplant, they need to start a series of childhood vaccinations.
These include Tdap, IPV (polio), Hib, Hep B, and PPSV, all given at 12 months, 14 months and 18 months post transplant followed by MMR (measles, mumps, rubella) given at 24 months.
He was late on the 18 month series so he had them, as well as the MMR, all done today.
There's a measles outbreak right now in the western United States so we were glad he finally was able to get that vaccination.
He's done now.
Yay.
Alkaline Phosphatase S- 104 (increase) (normal-39-117)
Ferritin- 1979 (decrease) (normal- 30-400) H
IViG
T shot
Day+ 735
A Doc Chen day.
Good labs.
And his 2/11 phlebotomy seems to have finally gotten his Ferritin below the 2000 mark! Yay!
Seems like these phlebotomies get his number to drop 50-100 points each time.
At this rate, with two phlebotomies a month, he may break the 1000 mark by summer.
That's the good news.
The bad news is that B continues to struggle with feeling yukky most of the time.
His pain and fatigue are constant.
But he keeps on keeping on, willing himself through what each day presents.
I've been making him take small walks daily, hoping that moving will help a bit with his fatigue and his mental state. He continues to be sad and it's so unlike him.
I'm thinking that maybe he needs to increase his Prednisone back to his January levels.
It seems the last reduction has really affected him in a bad way.
One thing I thought of that could also cause fatigue is his thyroid. I read that post transplant patients can develop thyroid issues so I asked Doc Chen to check his thyroid levels on his next set of labs. She added this test to his lab requisition.
Our Docs are very good at listening and have a wonderful willingness to work with us.
We sure appreciate that.
Update 3/5- B's thyroid labs were all normal, so his thyroid is not the issue with his fatigue.
Doc Chen believes a good portion of his fatigue is tied to his sleep apnea and wants us to get him fitted for the CPAP mask as soon as possible.
We've been told many times that fatigue is a very common complaint among post transplantees.
I think his fatigue is tied to a little bit of everything.
His sleep apnea, his Stage 2 Diastolic Dysfunction heart issue, his Prednisone reduction, his sedentary state and being a transplant patient could all be contributing to the fatigue.
Knowing what's causing it is one thing, but getting the treatable things treated is another.
I just know, we need to find a way to make him feel better, and we need to do it soon.
So, I guess I'm gonna nudge him a bit more to at least try the CPAP.
And perhaps, it's time to increase the Prednisone back to where it was a few months ago.
And, I need to keep him moving more and more each day.
I'm hoping we get it figured out sooner than later.
It hurts to see him so sick and tired.
Doc Chen also noticed that one of last Friday's squamous cell biopsy sites seemed to have an significant area of puffy redness around it that could indicate infection or cellulitis, so she put him on an antibiotic for 10 days.
Here's to better days ahead soon.
FEBRUARY 16. 2015- Monday
B had his final series of childhood vaccinations today at Doc Adler's.
Transplantees are like newborns, with no immune antibodies, so at about a year out from transplant, they need to start a series of childhood vaccinations.
These include Tdap, IPV (polio), Hib, Hep B, and PPSV, all given at 12 months, 14 months and 18 months post transplant followed by MMR (measles, mumps, rubella) given at 24 months.
He was late on the 18 month series so he had them, as well as the MMR, all done today.
There's a measles outbreak right now in the western United States so we were glad he finally was able to get that vaccination.
He's done now.
Yay.
Today B had another visit with his dermatologist Doc Hud.
Several of the biopsies B had done on Dec 8th have still not healed.
They were positive for squamous cell back then, so the fact that they haven't healed yet was worrying us. In Dec, the pathology stated that all the cancer was removed in the biopsy procedure, but the lack of healing could indicate some cancer cells remained.
So, Doc biopsied those two sites again, as well as another growth on B's neck that was biopsied a while back but is hurting him again.
If any of these 3 biopsies come back positive for squamous cell cancer, B will have to have MOHS surgery again. Yuk, we don't want that.
Today is the 2 year anniversary of B's Bone Marrow Transplant.
What a long, strange trip it's been.
We've learned so much about ourselves, our strengths and our weaknesses.
We've met amazing people, new friends for life.
We've learned so much medically and are comfortable being knowledgable advocates in the many medical decisions we share with most of B's Docs.
I'm surprise to find out this late in life that I am fascinated by medicine, and that understanding most of the medical stuff we've encountered these last 4 years has come easy to me.
Add that to my germaphobia, and the fact that I adore B with all my heart, and you come up with the perfect caregiver for him.
Despite seemingly unsurmountable odds, two years later, he's still here.
The unsinkable BC.
Our superman.
Update-2/18-
All three biopsies were negative for squamous cell cancer. Yay!
One of the sites has become slightly infected, so B is on antibiotics for the next 10 days, but they aren't cancer. That's such good news.
B's brother died from squamous cell cancer of the face and neck, so he gets nervous he might be following in his brother's footsteps when these things don't heal up correctly.
FEBRUARY 11. 2015- Wednesday
Today B had his regularly scheduled phlebotomy.
It went well, with no issues.
We are hoping that someday soon, these phlebotomies will finally get his Ferritin levels to drop below 2000. His last Ferritin lab result was 2057, so he's getting close.
Maybe the one done today will do the trick.
FEBRUARY 5. 2015- Thursday
Lab numbers: Labcorp (2/2)
Hemoglobin- 14.0 (increase) (normal-12.6-17.7)
Hematocrit- 42.3% (increase)(normal-37%-51%)
Hematocrit- 42.3% (increase)(normal-37%-51%)
Platelets- 187 (increase) (normal-155-379)
Neutrophils- 4.3 (increase) (normal-1.4-7.0)
White Blood Count- 7.4 (increase) (normal-3.4-10.8)
Creatinine- 1.43 (decrease) (normal-0.76-1.27) H
BUN- 16 (decrease) (normal 8-27)
eGFR- 51 (increase) (normal above 59) L
eGFR- 51 (increase) (normal above 59) L
Potassium- 4.3 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 101 (decrease) (normal-39-117)
Ferritin- 2057 (decrease) (normal- 30-400) H
Day+ 722
Our monthly visit with Doc Schriber and his team.
I dislike the long drive, but I love seeing these wonderful humans, taking meticulous care of their transplantees like they are family.
They love B and the feeling is mutual. He beams when he sees them.
B's labs this month were all stellar.
His liver and kidneys are behaving nicely.
Yay.
We brought up B's extreme fatigue and Doc thought it might be related to lowering B's Prednisone dose a few months ago.
Last week, B also had an unusual spell of melancholy that lasted several days, and had me thinking he might need a mild antidepressant. He just wanted to stay in bed and wasn't his usual upbeat self. Even music wasn't interesting to him. I was a bit alarmed, it was so unusual.
So, I mentioned it to Doc S and he said he thought the culprit was once again the reduction in Prednisone. Lowering that stuff will effect you physically and mentally.
He wants to hold off on adding any new med (like an antidepressant) to see if B stabilizes this next month. Whenever they make a change in meds, they don't want to muddy the waters by doing anything else so that if he does have an adverse reaction, they know what to blame. He does believe B will adjust to the lower Prednisone and be okay again, but if he's not okay by next month, Doc will probably want to increase the Prednisone to where it was.
Doc also gave the okay for B to wear a CPAP mask for his sleep apnea. Transplant patients aren't really supposed to be around humidifiers or moist air machines, and since the CPAP uses continuous moist air, we had to get the okay to do it.
I will have to be extra diligent on keeping the machine super clean, changing the water everyday and such.
It's probably a moot point, because I'm still pretty sure it's gonna take a miracle to get him to wear one of these masks.
But, he's got the green light if he chooses to do it.
So, we are only 8 days away from B's two year Bone Marrow Transplant anniversary.
It was two years ago today we left home to go live in Scottsdale so he could begin this part of his journey.
My memories of those first few scary weeks and months remain crystal clear.
I'm remembering B looking long and hard at our home as we slowly drove away, wondering if he'd ever see it again.
I remember how happy and overwhelmed he was as we pulled into our driveway, returning home almost 4 months later. Alive.
It seems like yesterday. It seems like forever ago.
My birthday was yesterday. Two years later, the greatest gift of all is still here beside me.
I have no words.
JANUARY 23. 2015- Friday
Lipid panel fasting Lab numbers- (2/2)
Cholesterol- 171 (normal-100-199)
Triglycerides-197 (normal-0-149) H
Hdl Cholesterol- 42-(normal->39)
Vidl Cholesterol Cal- 39 (normal-5-40)
Ldl Cholesterol Calc- 90 (normal-0-99)
Day+ 709
B has a gazillion specialists but he also has a primary care physician that he hasn't seen in a long time.
Doc Adler sees reports and/or referral requests cross his desk occasionally for B and he thought it would be nice if he could set eyes on him since it'd been a while.
So he called us and asked if we could come in to do some catching up.
Yep, adding yet one more Doc appt to our weekly schedule seems like just the thing we want to do. Just kidding. It was an easy visit.
Actually, this was the first time meeting Doc Adler for me and he seemed like a good guy.
He spent a lot of time updating his records with all the stuff that B's been up to these last four years. Some of it he was aware of, but not everything.
They talked a lot about B's neuropathy. B's been wondering if he might be an undiagnosed diabetic (which could also cause neuropathy) so Doc Adler ordered a test to make sure he wasn't.
And he ordered a Peripheral Artery Test to see if poor circulation in B's legs might be contributing as well. (scheduled for 2/9)
Also, to make sure B's cholesterol numbers are stable, the Doc ordered a lipid panel since it'd been over a year since he's had one of those.
So, Doc Adler is now an up-to-date happy camper.
We'll see if a few of the tests he's ordered might shed extra light on B's terrible, debilitating, painful neuropathy.
Really, if B didn't have that and the extreme fatigue that also seems to be the new norm for him, he'd be feeling almost normal.
But he'll take life with what he's got, problems and all, over the alternative any day.
He loves life, even on the days when life is a little heavier than he'd like it to be.
Next month, he's going to celebrate his two year anniversary of transplant.
Can you believe it?
Wow.
Miracles, of modern science and the unknown, will always amaze me.
Alkaline Phosphatase S- 101 (decrease) (normal-39-117)
Ferritin- 2057 (decrease) (normal- 30-400) H
Day+ 722
Our monthly visit with Doc Schriber and his team.
I dislike the long drive, but I love seeing these wonderful humans, taking meticulous care of their transplantees like they are family.
They love B and the feeling is mutual. He beams when he sees them.
B's labs this month were all stellar.
His liver and kidneys are behaving nicely.
Yay.
We brought up B's extreme fatigue and Doc thought it might be related to lowering B's Prednisone dose a few months ago.
Last week, B also had an unusual spell of melancholy that lasted several days, and had me thinking he might need a mild antidepressant. He just wanted to stay in bed and wasn't his usual upbeat self. Even music wasn't interesting to him. I was a bit alarmed, it was so unusual.
So, I mentioned it to Doc S and he said he thought the culprit was once again the reduction in Prednisone. Lowering that stuff will effect you physically and mentally.
He wants to hold off on adding any new med (like an antidepressant) to see if B stabilizes this next month. Whenever they make a change in meds, they don't want to muddy the waters by doing anything else so that if he does have an adverse reaction, they know what to blame. He does believe B will adjust to the lower Prednisone and be okay again, but if he's not okay by next month, Doc will probably want to increase the Prednisone to where it was.
Doc also gave the okay for B to wear a CPAP mask for his sleep apnea. Transplant patients aren't really supposed to be around humidifiers or moist air machines, and since the CPAP uses continuous moist air, we had to get the okay to do it.
I will have to be extra diligent on keeping the machine super clean, changing the water everyday and such.
It's probably a moot point, because I'm still pretty sure it's gonna take a miracle to get him to wear one of these masks.
But, he's got the green light if he chooses to do it.
So, we are only 8 days away from B's two year Bone Marrow Transplant anniversary.
It was two years ago today we left home to go live in Scottsdale so he could begin this part of his journey.
My memories of those first few scary weeks and months remain crystal clear.
I'm remembering B looking long and hard at our home as we slowly drove away, wondering if he'd ever see it again.
I remember how happy and overwhelmed he was as we pulled into our driveway, returning home almost 4 months later. Alive.
It seems like yesterday. It seems like forever ago.
My birthday was yesterday. Two years later, the greatest gift of all is still here beside me.
I have no words.
JANUARY 23. 2015- Friday
Lipid panel fasting Lab numbers- (2/2)
Cholesterol- 171 (normal-100-199)
Triglycerides-197 (normal-0-149) H
Hdl Cholesterol- 42-(normal->39)
Vidl Cholesterol Cal- 39 (normal-5-40)
Ldl Cholesterol Calc- 90 (normal-0-99)
Day+ 709
B has a gazillion specialists but he also has a primary care physician that he hasn't seen in a long time.
Doc Adler sees reports and/or referral requests cross his desk occasionally for B and he thought it would be nice if he could set eyes on him since it'd been a while.
So he called us and asked if we could come in to do some catching up.
Yep, adding yet one more Doc appt to our weekly schedule seems like just the thing we want to do. Just kidding. It was an easy visit.
Actually, this was the first time meeting Doc Adler for me and he seemed like a good guy.
He spent a lot of time updating his records with all the stuff that B's been up to these last four years. Some of it he was aware of, but not everything.
They talked a lot about B's neuropathy. B's been wondering if he might be an undiagnosed diabetic (which could also cause neuropathy) so Doc Adler ordered a test to make sure he wasn't.
And he ordered a Peripheral Artery Test to see if poor circulation in B's legs might be contributing as well. (scheduled for 2/9)
Also, to make sure B's cholesterol numbers are stable, the Doc ordered a lipid panel since it'd been over a year since he's had one of those.
So, Doc Adler is now an up-to-date happy camper.
We'll see if a few of the tests he's ordered might shed extra light on B's terrible, debilitating, painful neuropathy.
Really, if B didn't have that and the extreme fatigue that also seems to be the new norm for him, he'd be feeling almost normal.
But he'll take life with what he's got, problems and all, over the alternative any day.
He loves life, even on the days when life is a little heavier than he'd like it to be.
Next month, he's going to celebrate his two year anniversary of transplant.
Can you believe it?
Wow.
Miracles, of modern science and the unknown, will always amaze me.
JANUARY 22. 2015- Thursday
Lab numbers: Labcorp (1/19)
Hemoglobin- 12.8 (decrease) (normal-12.6-17.7)
Hematocrit- 40.9% (increase)(normal-37%-51%)
Hematocrit- 40.9% (increase)(normal-37%-51%)
Platelets- 178 (decrease) (normal-155-379)
Neutrophils- 3.2 (decrease) (normal-1.4-7.0)
White Blood Count- 5.4 (decrease) (normal-3.4-10.8)
Creatinine- 1.54 (decrease) (normal-0.76-1.27) H
BUN- 21 (increase) (normal 8-27)
eGFR- 47 (decrease) (normal above 59) L
eGFR- 47 (decrease) (normal above 59) L
Potassium- 3.9 (decrease) (normal 3.5-5.2)
Alkaline Phosphatase S- 108 (increase) (normal-39-117)
Ferritin- 2057 (decrease) (normal- 30-400) H
T shot
Day+ 708
Today was a Doc Chen day.
It's been three months since we've actually seen her.
At our November visit, we saw her NP Mary and we skipped our December Doc Chen visit because of the holidays.
Doc Chen visits have become very routine.
While we're there the Doc will give B a quick look see, then we'll get his labs and phlebotomies scheduled, and finally he gets a 4 hour IViG treatment/infusion to help boost his immune system.
At this visit, we let Doc Chen know that B had started and stopped Exjade since we'd last seen her.
We told her that we thought it was having an adverse effect on his kidneys. Gradually elevating kidney numbers and the return of edema in B's feet and ankles worried us.
She was okay with us stopping the drug.
Also, at this visit, we were finally able to ask about a sleep study B had in early November.
I've been telling all the Docs for quite some time that I know B has sleep apnea, but because of the time spent on all his other medical issues these last few years, we've never gotten around to ordering a sleep study to confirm it.
The sleep study test was ordered and done Nov 10th, almost 3 months ago, but this was our first chance to discuss the results.
To put it simply, B failed the study big time.
SEVERE sleep apnea.
Both obstructive and central.
The obstructive part is cause by gravity closing the airway in the back of his throat.
A CPAP (Continuous Positive Air Pressure) mask is recommended to keep the airway open even though they couldn't get one to work for B during his actual sleep study.
And, ah, he's not on board with this mask thing. At all. He hated it.
So, we'll see where we end up with that idea.
I'm not saying he's gonna and I'm not saying he's not gonna. I'm saying, we'll see.
We have discovered that sleeping on his side helps with the obstructive issue so maybe I'll find a way to get him to do that more if he won't wear a mask.
Then there's the central part of his apnea.
Central apnea occurs when the signal to the body to inhale is not being transmitted from the breathing center in the brain.
That lack of signal can be tied to many maladies. Pain meds can also contribute.
Opiates are notorious for causing breathing issues.
For B, he will just stop breathing while he's sleeping.
I have witnessed it often. He simply stops breathing for 15-20 seconds at a time (yes, I time it), then he will slightly wake up gasping and overbreathing.
After a few minutes, his breathing will settle to almost normal only to have the cycle repeat once again. I am often awakened by the overbreathing part of it so I wake him up and tell him to change his position. This sometimes helps. He doesn't have the central apnea all the time, but it's pretty darn often.
It's certainly not restful. For either of us. And I'm sure there are times he's experiencing central apnea and I'm sleeping too deeply to be aware of it.
It scares the heck out of me that he won't restart breathing someday and I'll have missed helping him.
Needless to say, I say a little prayer of thanks every morning we both wake up.
Good morning world, we're so happy to see you again.
He's been wanting to try to reduce his pain med dose for a while now (he wants to be able to drive again and can't while on these meds) but lately he's been so fatigued, exhausted and unwell that the thought of him going through a mild withdrawal while increasing his pain seems daunting.
But, if his pain meds might be the cause of the central apnea and reducing his dose helps him sleep better, a good quality restorative healing sleep, maybe that might help with all the other junk he's been feeling lately.
Catch 22.
We got some figuring out to do.
JANUARY 14. 2015- Wednesday
Today B had a regularly scheduled phlebotomy.
A few issues getting a good stick, but they were successfully able to get the phlebotomy done.
Alkaline Phosphatase S- 108 (increase) (normal-39-117)
Ferritin- 2057 (decrease) (normal- 30-400) H
T shot
Day+ 708
Today was a Doc Chen day.
It's been three months since we've actually seen her.
At our November visit, we saw her NP Mary and we skipped our December Doc Chen visit because of the holidays.
Doc Chen visits have become very routine.
While we're there the Doc will give B a quick look see, then we'll get his labs and phlebotomies scheduled, and finally he gets a 4 hour IViG treatment/infusion to help boost his immune system.
At this visit, we let Doc Chen know that B had started and stopped Exjade since we'd last seen her.
We told her that we thought it was having an adverse effect on his kidneys. Gradually elevating kidney numbers and the return of edema in B's feet and ankles worried us.
She was okay with us stopping the drug.
Also, at this visit, we were finally able to ask about a sleep study B had in early November.
I've been telling all the Docs for quite some time that I know B has sleep apnea, but because of the time spent on all his other medical issues these last few years, we've never gotten around to ordering a sleep study to confirm it.
The sleep study test was ordered and done Nov 10th, almost 3 months ago, but this was our first chance to discuss the results.
To put it simply, B failed the study big time.
SEVERE sleep apnea.
Both obstructive and central.
The obstructive part is cause by gravity closing the airway in the back of his throat.
A CPAP (Continuous Positive Air Pressure) mask is recommended to keep the airway open even though they couldn't get one to work for B during his actual sleep study.
And, ah, he's not on board with this mask thing. At all. He hated it.
So, we'll see where we end up with that idea.
I'm not saying he's gonna and I'm not saying he's not gonna. I'm saying, we'll see.
We have discovered that sleeping on his side helps with the obstructive issue so maybe I'll find a way to get him to do that more if he won't wear a mask.
Then there's the central part of his apnea.
Central apnea occurs when the signal to the body to inhale is not being transmitted from the breathing center in the brain.
That lack of signal can be tied to many maladies. Pain meds can also contribute.
Opiates are notorious for causing breathing issues.
For B, he will just stop breathing while he's sleeping.
I have witnessed it often. He simply stops breathing for 15-20 seconds at a time (yes, I time it), then he will slightly wake up gasping and overbreathing.
After a few minutes, his breathing will settle to almost normal only to have the cycle repeat once again. I am often awakened by the overbreathing part of it so I wake him up and tell him to change his position. This sometimes helps. He doesn't have the central apnea all the time, but it's pretty darn often.
It's certainly not restful. For either of us. And I'm sure there are times he's experiencing central apnea and I'm sleeping too deeply to be aware of it.
It scares the heck out of me that he won't restart breathing someday and I'll have missed helping him.
Needless to say, I say a little prayer of thanks every morning we both wake up.
Good morning world, we're so happy to see you again.
He's been wanting to try to reduce his pain med dose for a while now (he wants to be able to drive again and can't while on these meds) but lately he's been so fatigued, exhausted and unwell that the thought of him going through a mild withdrawal while increasing his pain seems daunting.
But, if his pain meds might be the cause of the central apnea and reducing his dose helps him sleep better, a good quality restorative healing sleep, maybe that might help with all the other junk he's been feeling lately.
Catch 22.
We got some figuring out to do.
JANUARY 14. 2015- Wednesday
Today B had a regularly scheduled phlebotomy.
A few issues getting a good stick, but they were successfully able to get the phlebotomy done.
Lab numbers: Labcorp (1/5)
Hemoglobin- 13.0 (increase) (normal-12.6-17.7)
Hematocrit- 41.6% (increase)(normal-37%-51%)
Hematocrit- 41.6% (increase)(normal-37%-51%)
Platelets- 211 (increase) (normal-155-379)
Neutrophils- 5.1 (increase) (normal-1.4-7.0)
White Blood Count- 7.9 (decrease) (normal-3.4-10.8)
Creatinine- 1.74 (increase) (normal-0.76-1.27) H
BUN- 20 (increase) (normal 8-27)
eGFR- 41 (decrease) (normal above 59) L
eGFR- 41 (decrease) (normal above 59) L
Potassium- 4.0 (decrease) (normal 3.5-5.2)
Alkaline Phosphatase S- 106 (increase) (normal-39-117)
Ferritin- 2106 (decrease) (normal- 30-400) H
Day+ 694
We had a nice and quiet holiday.
Lots of friends, family and music, but low keyed, easy going gatherings.
The old year ended and the new began with snowfall, unusual for our desert town.
Also unusual, B didn't have any Doctors or Labs or Treatments the entire week after Christmas.
But we came back to reality this week.
Monday had labs and Doc Hud.
And today was a Doc Schriber day.
We brought him up to date on B's fingernail issue.
He agrees with Doc Hud about not treating the Lichen Planus/GVH? with Prednisone.
In fact, because B's GVH in his mouth and on his arms looks better today, Doc S wants to try to reduce B's daily Prednisone dose a bit further.
He dropped it down in October from 5mg daily to alternating 2.5mg and 5mg every other day and today he wants us to drop it to just 2.5mg daily.
If, this can be accomplished successfully with no new GVH issues, B has been given the green light to eat... a salad!
He asks about salads every single time we've seen the Doc for the last 23 months.
So, his face lit up when he got a yes this time!
There are caveats: he has to wait 3 weeks after reducing the Prednisone before he tries one, and No restaurant or bagged salads.
I've gotta buy the lettuce and tomato and scrub the heck out of them. No problemo.
We will start real slow, with a small salad cause I'm sure B's gastric system won't know what to do with itself after 23 months of no fresh lettuce.
But, even a small salad is... a salad.
And this will bring our homemade tacos much closer to normal too.
Yay!
We are at 23 months post transplant.
Next month, it will be two years since this part of his journey began.
It feels like yesterday. It feels like forever ago.
B said last week that while he appreciates how we've mastered this 'live in the moment' stuff, he'd actually like to maybe start making plans for the future.
Wow.
Here's to the future!
Happy New Year!
Alkaline Phosphatase S- 106 (increase) (normal-39-117)
Ferritin- 2106 (decrease) (normal- 30-400) H
Day+ 694
We had a nice and quiet holiday.
Lots of friends, family and music, but low keyed, easy going gatherings.
The old year ended and the new began with snowfall, unusual for our desert town.
Also unusual, B didn't have any Doctors or Labs or Treatments the entire week after Christmas.
But we came back to reality this week.
Monday had labs and Doc Hud.
And today was a Doc Schriber day.
We brought him up to date on B's fingernail issue.
He agrees with Doc Hud about not treating the Lichen Planus/GVH? with Prednisone.
In fact, because B's GVH in his mouth and on his arms looks better today, Doc S wants to try to reduce B's daily Prednisone dose a bit further.
He dropped it down in October from 5mg daily to alternating 2.5mg and 5mg every other day and today he wants us to drop it to just 2.5mg daily.
If, this can be accomplished successfully with no new GVH issues, B has been given the green light to eat... a salad!
He asks about salads every single time we've seen the Doc for the last 23 months.
So, his face lit up when he got a yes this time!
There are caveats: he has to wait 3 weeks after reducing the Prednisone before he tries one, and No restaurant or bagged salads.
I've gotta buy the lettuce and tomato and scrub the heck out of them. No problemo.
We will start real slow, with a small salad cause I'm sure B's gastric system won't know what to do with itself after 23 months of no fresh lettuce.
But, even a small salad is... a salad.
And this will bring our homemade tacos much closer to normal too.
Yay!
We are at 23 months post transplant.
Next month, it will be two years since this part of his journey began.
It feels like yesterday. It feels like forever ago.
B said last week that while he appreciates how we've mastered this 'live in the moment' stuff, he'd actually like to maybe start making plans for the future.
Wow.
Here's to the future!
Happy New Year!
Today B saw Doc Hud again.
This is becoming an every three or four week thing as we try to control the squamous cell carcinomas that keep appearing.
We are staying vigilant. Poor B has to have his face cut almost every time we go in.
On Nov 10- he had 6 suspicious growths removed for biopsy. 2 were AK, 4 were squamous cell, two of which needed MOHS surgery.
On Dec 8- 6 more suspicious growths removed. 4 were AK, two were squamous cell that were addressed at time of biopsy so no further treatment needed on those.
Today, Doc only biopsied one suspicious growth.
A lot of the previous biopsies seem, to me, to be healing too slowly, but Doc wasn't concerned.
Also, along the scar line of the cheek MOHS surgery, there is a new sore, but Doc says it's a suture coming out.
I'm keeping an eye on it just in case that area is becoming cancerous again.
Poor B. Between the active Graft vs Host disease on his facial skin and all these surgeries and biopsies on his face, he says he's feeling like Frankenstein.
I assure him he doesn't look as bad as he thinks, but he's affected by his looks right now.
On a different note, we showed Doc Hud B's weird, absent fingernail.
I asked if it was Lichen Planus or GVH.
Doc says it's almost impossible to tell the difference between these two, but with GVH, usually many nails are affected, all at once.
Since this is only the one nail, he's leaning towards Lichen Planus.
And even if it was GVH, on just that one nail, the treatment would be more Prednisone and Doc doesn't think it's worth the nasty side effects of that steroid.
The official name of what B has on that nail is anonychia or absence of nail.
Let's hope it doesn't happen to any other of his nails.
Update- Pathology report on biopsy- the suspicious growth was squamous cell carcinoma addressed at time of biopsy so no further treatment need on it.
DECEMBER 23. 2014- Tuesday
Lab numbers: Labcorp (12/22)
Hemoglobin- 12.8 (decrease) (normal-12.6-17.7)
Hematocrit- 39.8% (decrease)(normal-37%-51%)
Hematocrit- 39.8% (decrease)(normal-37%-51%)
Platelets- 201 (decrease) (normal-155-379)
Neutrophils- 4.7 (decrease) (normal-1.4-7.0)
White Blood Count- 8.0 (increase) (normal-3.4-10.8)
Creatinine- 1.38 (decrease) (normal-0.76-1.27) H
BUN- 18 (decrease) (normal 8-27)
eGFR- 54 (increase) (normal above 59) L
eGFR- 54 (increase) (normal above 59) L
Potassium- 4.3 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 100 (decrease) (normal-39-117)
T shot
Alkaline Phosphatase S- 100 (decrease) (normal-39-117)
T shot
B had his regularly scheduled, routine phlebotomy today.
It went smoothly, with no sticking or flowing issues.
B's kidney labs improved quite a bit in the last two weeks.
Maybe because we have been holding off on the Exjade now for about three weeks?
In the brief time (Nov 13-Dec 1) that he experimented with Exjade, he really only took about 15 pills in total.
But his kidney function did decline during that time, and he started retaining water again in his ankles. Without Exjade, his labs have improved and the water weight has disappeared.
Coincidence or side effect, who knows, but, because his ferritin levels remain so high, I think he may have to experiment at least once more with Exjade after the first of the year.
We'll see.
In the meantime, we have to hope these phlebotomies, done every two weeks or so, are starting to lower those crazy high ferritin levels.
He's got labs in a few weeks to check the ferritin levels again.
Fingers crossed we see improvement.
At this Christmastime, we continue to count our many blessings.
And you, dear friends and family, are among them.
Thank you for your continued thoughts of healing being sent B's way.
See you in the new year.
DECEMBER 11. 2014- Thursday
Labs done on 12/8 (results found there)
Day+ 666
We saw Doc Schriber today.
It was relatively uneventful.
We talked about how B's been feeling funky quite a bit lately and Doc thought it might have something to do with decreasing the Prednisone a few months ago.
With the GVH in his mouth being worse Doc said B could try going back up on his dose to see if he might feel better.
While it looks like B will never be able to get completely off Prednisone, he's not ready to increase his dose quite yet. He's worried a higher dose will produce or exacerbate other unwanted side effects such as his Avascular Necrosis.
B also hasn't wanted to start the Exjade again.
He's disappointed in his kidney labs, plus he felt like his kidneys weren't working as well.
But with his ferritin rising with these last labs, it's disappointing he can't seem to tolerate the Exjade.
Maybe someday soon, he'll give it another try.
In the meantime, hopefully, the regular phlebotomies will eventually have some effect on lowering the ferritin.
So, it's status quo for now.
Update 12/15-
B had been mentioning the last week or so that one of his fingernails felt like it had a splinter going through it.
He mentioned it again today so I decided to take a look at it with a magnifying glass and was sort of shocked by what I saw. It's not a splinter.
It looks like his fingernail is dissolving away, and there is a hole through the middle of the nail that goes all the way through to the quick.
So, I googled 'Graft vs Host disease and nail issues' and sure enough, found pictures that look just like what's happening on B's nail.
If I'm right, he may have a case of Lichen Planus on that nail.
I called Scottsdale and left a message, but have yet to hear back. I've got a picture of B's nail to send them when I hear back.
Maybe he needs to go ahead and up the dose of Prednisone sooner than later, but we need the Doc to tell us if that is indeed what we need to do.
Darn it. I wish we had mentioned the nail while we were there in Scottsdale.
It was hurting B in the car on the way up, but he didn't mention it during the exam and I hadn't looked at it yet, so I didn't know how bad it really was.
Who knew you could get GVH in your fingernail? (if that's what it is)
B's not much of a complainer, so I don't always catch issues that come up right away.
We're a bit nervous about this because if it is GVH and it spreads to other fingernails, it could affect his guitar playing.
And that would be a very bad thing, because we all know that music is vital to his survival.
Gotta get this figured out soon.
DECEMBER 10. 2014- Wednesday
B had phlebotomy today. It went smoothly.
Day+ 665
DECEMBER 8. 2014- Monday
Lab numbers: Labcorp (12/2)
Hemoglobin- 13.8 (increase) (normal-12.6-17.7)
Hematocrit- 41.6% (increase)(normal-37%-51%)
Hematocrit- 41.6% (increase)(normal-37%-51%)
Platelets- 216 (decrease) (normal-155-379)
Neutrophils- 4.7 (decrease) (normal-1.4-7.0)
White Blood Count- 7.6 (decrease) (normal-3.4-10.8)
Creatinine- 1.61 (increase) (normal-0.76-1.27) H
BUN- 21 (increase) (normal 8-27)
eGFR- 45 (decrease) (normal above 59) L
eGFR- 45 (decrease) (normal above 59) L
Potassium- 4.1 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 103 (increase) (normal-39-117)
Ferritin- 2742 (increase) (normal- 30-400) H
Alkaline Phosphatase S- 103 (increase) (normal-39-117)
Ferritin- 2742 (increase) (normal- 30-400) H
B's kidney numbers have continued their gradual decline.
And that's without Exjade for the last 8 days. His last dose was Monday, Dec 1st.
B's been feeling funky all week and he decided to take a break from the Exjade.
He started to retain water again and felt like his kidneys weren't working well, so he didn't want to take a chance of causing more damage to them.
He also saw Doc Hud, his dermatologist today. Again.
After the extensive MOHS surgery a few weeks ago, we wanted Doc Hud to biopsy a few more areas that have been bothering him.
So Doc took samples of 6 new suspicious growths.
It's as if B has turned into a squamous cell carcinoma factory on his face, neck and ears.
I wouldn't be surprised if more MOHS surgery is ahead of him. Hopefully, since these areas biopsied today were small, if he does need it, surgery won't be quite as extensive as the MOHS he had a few weeks ago.
Update- Pathology report on the 6 suspicious growths removed. 4 were AK, and two were squamous cell carcinoma that were addressed at time of biopsy so no further treatment needed on those.
B's ferritin levels also went up again.
We're hoping it's reactive ferritin due to his MOHS surgery.
DECEMBER 2. 2014- Tuesday
Lab numbers: Labcorp (12/2)
Hemoglobin- 12.2 (increase) (normal-12.6-17.7)
Hematocrit- 38.1% (increase)(normal-37%-51%)
Hematocrit- 38.1% (increase)(normal-37%-51%)
Platelets- 223 (increase) (normal-155-379)
Neutrophils- 5.2 (increase) (normal-1.4-7.0)
White Blood Count- 8.1 (increase) (normal-3.4-10.8)
Creatinine- 1.47 (increase) (normal-0.76-1.27) H
BUN- 16 (increase) (normal 8-27)
eGFR- 50 (decrease) (normal above 59) L
eGFR- 50 (decrease) (normal above 59) L
Potassium- 3.9 (unchanged) (normal 3.5-5.2)
Alkaline Phosphatase S- 100 (increase) (normal-39-117)
Alkaline Phosphatase S- 100 (increase) (normal-39-117)
Day+ 657
Weekly labs to see how Exjade is behaving.
His kidney numbers again went slightly in the wrong direction, but again, just as last week, only slightly.
His face is healing nicely from the MOHS surgery. No complications or infection.
Weekly labs to see how Exjade is behaving.
His kidney numbers again went slightly in the wrong direction, but again, just as last week, only slightly.
His face is healing nicely from the MOHS surgery. No complications or infection.
Lab numbers: Labcorp (11/25)
Hemoglobin- 11.2 (decrease) (normal-12.6-17.7)
Hematocrit- 34.5% (increase)(normal-37%-51%)
Hematocrit- 34.5% (increase)(normal-37%-51%)
Platelets- 211 (unchanged) (normal-155-379)
Neutrophils- 4.0 (decrease) (normal-1.4-7.0)
White Blood Count- 6.4 (increase) (normal-3.4-10.8)
Creatinine- 1.43 (increase) (normal-0.76-1.27) H
BUN- 15 (decrease) (normal 8-27)
eGFR- 51 (decrease) (normal above 59) L
eGFR- 51 (decrease) (normal above 59) L
Potassium- 3.9 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 87 (decrease) (normal-39-117)
Alkaline Phosphatase S- 87 (decrease) (normal-39-117)
Day+ 650
Today's labs were done to track if Exjade is having a negative effect on B's liver or kidneys.
As of today he's had about 10 days of Exjade (started on 11/13 with 2 missed days).
So far, so good.
His liver labs remain stellar, and while his kidney labs did go a smidge backwards, they are still doing fine.
These Exjade monitoring labs will continue weekly for the next few months.
Today's labs were done to track if Exjade is having a negative effect on B's liver or kidneys.
As of today he's had about 10 days of Exjade (started on 11/13 with 2 missed days).
So far, so good.
His liver labs remain stellar, and while his kidney labs did go a smidge backwards, they are still doing fine.
These Exjade monitoring labs will continue weekly for the next few months.
NOVEMBER 24. 2014- Monday
So, today was B's MOHS surgery to remove two squamous cell carcinomas, one on his cheek and one on his neck.
Surgery went well.
But whoa, B looks like he was in a fight with a guy with a big knife.
The incisions are large, his face is swollen and he has a black eye.
I had MOHS surgery on my leg some years ago and I remember being alarmed at how big the incision was. It eventually healed to where it is almost invisible.
That's what I'm reminding B of right now.
His will heal too, but in the meantime, he looks beat up.
Once again, his sense of humor is intact, telling folks "you should see the other guy."
Love this man and the way he navigates adversity.
He's one of a kind for sure.
As far as we can tell, B's still had no adverse side effect issues with Exjade.
His weekly labs will let us know if his innards are handling it too.
Here's hoping.
NOVEMBER 21. 2014- Friday
B had a successful phlebotomy today.
Other than some pretty low blood pressure when finished, it went smoothly.
Yay.
He was feeling funky (nausea and headache) most of the day prior to his appt. so we weren't sure if he'd need to reschedule. Happy it went well.
Not sure if his nausea/headache stuff is related to Exjade.
We'll see how he feels tomorrow.
NOVEMBER 19. 2014- Wednesday
Lab numbers: Labcorp (11/17)
Hemoglobin- 12.6 (decrease) (normal-12.6-17.7)
Hematocrit- 38.6% (increase)(normal-37%-51%)
Hematocrit- 38.6% (increase)(normal-37%-51%)
Platelets- 211 (increase) (normal-155-379)
Neutrophils- 4.1 (decrease) (normal-1.4-7.0)
White Blood Count- 6.2 (decrease) (normal-3.4-10.8)
Creatinine- 1.34 (decrease) (normal-0.76-1.27) H
BUN- 16 (decrease) (normal 8-27)
eGFR- 56 (increase) (normal above 59) L
eGFR- 56 (increase) (normal above 59) L
Potassium- 3.6 (decrease) (normal 3.5-5.2)
Alkaline Phosphatase S- 105 (increase) (normal-39-117)
Alkaline Phosphatase S- 105 (increase) (normal-39-117)
IVIG
T shot
Ferritin- 2223 (decrease) (normal- 30-400) H
Weight 154 (decrease)
Day+ 644
T shot
Ferritin- 2223 (decrease) (normal- 30-400) H
Weight 154 (decrease)
Day+ 644
Today was a Doc Chen day.
She was triple booked, so after a 2.5 hour wait, we saw her NP Mary instead.
We love Mary too, and B wasn't feeling sick or anything, so that was fine with us.
B’s labs remain stellar! Yay!
In fact, his kidney labs are the best they’ve been since before transplant.
For those of you who might not know, B’s kidneys failed big time right after transplant and have been s-l-o-w-l-y recovering these last 21 months.
These latest labs show his kidney’s are functioning just a smidge shy of normal now.
Amazing!
During this season of Thanksgiving, we are mindful of all we have to be grateful for.
The Giving-Thanks-For list is long, but it starts with:
B is still here!!
After 16 months of traveling the transfusion train to nowhere and being close to running out of track (with only about 6 months left to live), he is still here 21 months later!!
Still making music and still making everyone who knows and loves him happy campers!
Thank you to every single one of you who have helped him through his illnesses and transplant.
You know who you are.
Todays’s visit went smoothly.
No big issues to deal with.
The GVH in his mouth is a bit worse, but the GVH on his skin looks better.
Speaking of skin, B saw Doc Hud last week and had 6 suspicious growths biopsied.
3 were unremarkable, but 3 were squamous cell carcinoma, so he’s going to have to have MOHS surgery on two of them (cheek and neck).
It is what it is.
We are grateful the technology exists to remove these cancers early so they don’t become bigger issues down the road.
We lost B’s brother J this last January to untreated squamous cell carcinomas on his face and neck.
Yep, we don’t play around with skin cancer.
Early treatment 99.9% of the time takes care of these guys.
No one should die of skin squamous cell cancer.
I’ve been chronicling B’s experiment with taking the chelating drug Exjade.
So far, so good. No visible signs of negative side effects.
These labs only had 4 days of Exjade on them, so it’s too early to tell if the drug will give his kidneys and liver trouble. Continued weekly labs will let us know in a timely way if he does start to have negative organ side effects.
B’s ferritin levels have dropped to 2223. (normal is 30-400)
Still very high, but the lowest he’s had since January 13th, 2014, when his ferritin was an astronomical 4079!
Some of that high number was reactive ferritin, due to his Dec 2013 broken back. Ferritin will rise temporarily with trauma. Once the reactive ferritin settled down, his number has hovered between 2800-3200 for most of this year.
The twice monthly phlebotomies are ever so slowly lowering his ferritin levels, and now with Exjade on board, we’re hopeful he might even get below 2000 before the end of the year.
We’ve been told it could take 6 months for his levels to finally be within normal parameters.
And we’re keeping our fingers crossed that with normal ferritin levels, he will not be in so much pain.
High iron concentrations accumulate in joints, so the pain it can cause mimics having arthritis in every joint in your body.
That’s the pain B feels all the time, and it’s pretty significant.
We’ve always thought the pain was related to the damaging chemo he had in 2011, and that, after 3 years, it was probably permanent, but now we have a ray of hope that he will find relief as his iron overload issue is resolved.
So, all in all, all is good.
Not perfect, but good.
And we’ll take that.
And we’ll give Thanks for that.
Happy Thanksgiving to you and yours as well.
Peace.
NOVEMBER 13. 2014- Thursday
No labs
Today's update is more for my reference, because, besides using this blog to keep folks up to date on B's journey, I also use this blog as a medical journal of sorts.
Here, I can look back on past posts to reference when B's had important medical procedures as well as the outcomes of those procedures.
One of the reasons I go into a bit of detail when I talk about medical stuff is that I can easily access this info from my phone whenever need be from just about anywhere.
This has come in handy many times though out B's journey.
I know these medical details can make a layman's eyes glaze over, so just skip quickly over the technical stuff when you feel your head about to explode. I'm really not trying to cause pain here.
Anyhoo, today, B started taking Exjade.
Gulp.
I've referenced this potentially dangerous (and potentially healing) drug in posts past.
We've been wrestling with making the decision to start this drug, trying to get as many facts and Doctor's opinions as we could to make an informed decision.
After weighing the risks vs benefits, B's going to give it a go.
It will be a day to day, week to week journey with this new drug, hence this update.
I want to keep track here, in real time, of the side effects and special lab work required when taking Exjade.
While doing research for Exjade, I wandered into an Iron Disorder forum and was astounded to find that almost all the folks there who also had crazy high ferritin numbers, also suffered, like B, from intense pain in their joints and muscles, from head to toe.
Wouldn't it be wonderful if B could find relief from his pain by getting his ferritin levels back into a normal range?
Today's update is more for my reference, because, besides using this blog to keep folks up to date on B's journey, I also use this blog as a medical journal of sorts.
Here, I can look back on past posts to reference when B's had important medical procedures as well as the outcomes of those procedures.
One of the reasons I go into a bit of detail when I talk about medical stuff is that I can easily access this info from my phone whenever need be from just about anywhere.
This has come in handy many times though out B's journey.
I know these medical details can make a layman's eyes glaze over, so just skip quickly over the technical stuff when you feel your head about to explode. I'm really not trying to cause pain here.
Anyhoo, today, B started taking Exjade.
Gulp.
I've referenced this potentially dangerous (and potentially healing) drug in posts past.
We've been wrestling with making the decision to start this drug, trying to get as many facts and Doctor's opinions as we could to make an informed decision.
After weighing the risks vs benefits, B's going to give it a go.
It will be a day to day, week to week journey with this new drug, hence this update.
I want to keep track here, in real time, of the side effects and special lab work required when taking Exjade.
While doing research for Exjade, I wandered into an Iron Disorder forum and was astounded to find that almost all the folks there who also had crazy high ferritin numbers, also suffered, like B, from intense pain in their joints and muscles, from head to toe.
Wouldn't it be wonderful if B could find relief from his pain by getting his ferritin levels back into a normal range?
Update-11/14- So far so good. No immediate adverse side effects.
Not sure if side effects take a while to show up or if he's going to be to be lucky.
At least, so far, he's not feeling sick from this med.
Hopefully Monday's upcoming labs will show his liver and kidneys are playing nicely with the new med.
Time will tell.
Update-11/15- Tonight B suddenly developed loud tinnitus in his right ear.
After several hours, it has gotten better, but it is not gone.
One of the warnings about Exjade is it can adversely affect hearing and eyesight.
Before I give him tomorrow morning's dose, I will check to see if the tinnitus is gone and I will also check with the on-call pharmacist to see if we should continue the med if the tinnitus hasn't gone away.
Update- 11/18- Skipped the 11/16 dose while I checked out if B's tinnitus was related to Exjade. The tinnitus was gone by morning 11/16, so we decided to start the drug again yesterday morning (11/17). So far, he's had a total of 5 days of Exjade with no obvious signs of adverse side effects. Weekly labs will determine if his innards are getting by unscathed as well.
NOVEMBER 4. 2014- Tuesday
Lab numbers: Labcorp (11/3 CMP, 11/6 CBC)
Hemoglobin- 13.0 (increase) (normal-12.6-17.7)
Hematocrit- 37.9% (decrease)(normal-37%-51%)
Hematocrit- 37.9% (decrease)(normal-37%-51%)
Platelets- 200 (increase) (normal-155-379)
Neutrophils- 4.7 (increase) (normal-1.4-7.0)
White Blood Count- 7.5 (increase) (normal-3.4-10.8)
Creatinine- 1.37 (decrease) (normal-0.76-1.27) H
BUN- 19 (decrease) (normal 8-27)
eGFR- 54 (increase) (normal above 59) L
eGFR- 54 (increase) (normal above 59) L
Potassium- 4.5 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 92 (decrease) (normal-39-117)
Alkaline Phosphatase S- 92 (decrease) (normal-39-117)
Phlebotomy (11/6)
Ferritin- 2576 (decrease) (normal- 30-400) H
Weight 158 (increase)
Day+ 629
Ferritin- 2576 (decrease) (normal- 30-400) H
Weight 158 (increase)
Day+ 629
We had a busy week.
Saw Doc Schriber on Tuesday, then B had a phlebotomy on Thursday (11/6).
Both visits went well.
B’s labs were good, in fact his kidney numbers were the closest to normal that they’ve been since transplant. Yay!
His platelets were an astounding 200 and his Hemoglobin and Hematocrit were high enough to allow him to get his scheduled phlebotomy.
I took a printout of the black box warnings for Exjade (the scary chelating drug that Doc Chen wants B to start) to discuss with Doc Schriber during this visit, and Doc patiently addressed my concerns pretty well.
Doc Schriber is on board with B beginning Exjade to help reduce his crazy high ferritin levels.
I’m still nervous, but if B's high ferritin levels are indeed causing irreversible damage to his heart, then we need to proceed.
So, B will start Exjade in a few weeks.
It’s so potentially dangerous that B has to sign papers acknowledging the drug’s risks before he can start.
We’ll do that at our next Doc Chen visit.
Once he starts Exjade, I will be watching him like a hawk for any sign of trouble.
Doc Schriber says if B does develop a troublesome side effect, he simply needs to discontinue the drug and things should normalize. Hope so.
We still haven’t heard from B’s cardiologist about comparing the September echocardiogram to the one done in March to see if the Stage 2 Diastolic Dysfunction is new news or old news.
Doc Schribers office is going to send a request to the cardiologist for that info since our requests have gone unanswered.
All in all it was a good trip.
B’s Graft vs. Host disease is stable. Even with a reduction in his anti rejection med Prednisone a few months ago.
For now, because some of Exjade’s potential side effects can mimic GVH, Doc S does not want to try to further reduce B’s anti rejection meds while he's taking the Exjade.
That way, if a new symptom comes up or if one of the ones he already has, worsens, we will have a better idea of what’s causing it.
We continue to have music fill our lives.
And it’s physical effects on B are real and tangible.
During times when he's not doing something musically, he seems sicker somehow, and more tired. And he definitely feels more pain.
Music energizes him and helps distract him from his constant pain.
Music, for B, is vital.
During times when he's not doing something musically, he seems sicker somehow, and more tired. And he definitely feels more pain.
Music energizes him and helps distract him from his constant pain.
Music, for B, is vital.
His newest musical interest is playing the drums. Yep, we now have a full set in our living room and he spends several hours a day playing along with Sirius's many rock and roll and jazz channels.
Not surprisingly, he's learned quickly and even played drums on a few songs at his last gig. He did great! (even playing on Paul Simon's ‘Fifty Way’s to Leave Your Lover')
He’s also playing more and more electric lead here at home, trying to coax his fingers into doing what they used to do, and I heard him nail a Steely Dan lead the other day. Slowly but surely.
We are feeling incredibly lucky these days.
Living life to the fullest, one precious moment at a time.
OCTOBER 23. 2014- Thursday
Lab numbers: Labcorp (10/20)(CBC only)
Hemoglobin- 12.3 (increase) (normal-12.6-17.7) L
Hematocrit- 38.7% (increase)(normal-37%-51%)
Hematocrit- 38.7% (increase)(normal-37%-51%)
Platelets- 178 (decrease) (normal-155-379)
Neutrophils- 3.7 (decrease) (normal-1.4-7.0)
White Blood Count- 6.4 (decrease) (normal-3.4-10.8)
Creatinine- 1.65 (decrease) (normal-0.76-1.27) H
BUN- 21 (increase) (normal 8-27)
eGFR- 43 (increase) (normal above 59) L
eGFR- 43 (increase) (normal above 59) L
Potassium- 4.2 (decrease) (normal 3.5-5.2)
Alkaline Phosphatase S- 102 (increase) (normal-39-117)
Alkaline Phosphatase S- 102 (increase) (normal-39-117)
Ferritin- 2810 (increase) (normal- 30-400) H
Weight 157 (increase)
Day+ 617
Today was a phlebotomy day at Az Oncology's eastside office.
B's blood numbers were on the lunatic fringe of being too low to go, but were just close enough to go ahead.
Good thing, 'cause his ferritin just keeps climbing.
Even with phlebotomies every two weeks.
Deep sigh. I wish I knew the cause of this iron overload. I'm so fearful of the iron chelating drug (Exjade) that Doc Chen wants him to start.
And we still haven't heard from Doc Schriber if he feels comfy with Exjade for B, and really, even if Doc S says take it, I'm not sure I can in good conscience give it to B.
I have a strong, bad feeling about that drug.
We are also still waiting to hear from B's cardiologist if the Stage 2 Diastolic Dysfunction revealed in his echocardiogram is old news or new news.
So, I guess we'll all wait together for a bit more.
I'll keep you posted when we hear something.
Ciao for now.
Lab numbers: Labcorp (10/13)
Hemoglobin- 11.9 (decrease) (normal-12.6-17.7) L
Hematocrit- 37.9% (decrease)(normal-37%-51%)
Hematocrit- 37.9% (decrease)(normal-37%-51%)
Platelets- 188 (increase) (normal-155-379)
Neutrophils- 4.2 (unchanged) (normal-1.4-7.0)
White Blood Count- 7.5 (increase) (normal-3.4-10.8)
Ferritin- 2618 (increase) (normal- 30-400) H
T shot
IVIG
Creatinine- 1.65 (decrease) (normal-0.76-1.27) H
BUN- 21 (increase) (normal 8-27)
eGFR- 43 (increase) (normal above 59) L
eGFR- 43 (increase) (normal above 59) L
Potassium- 4.2 (decrease) (normal 3.5-5.2)
Alkaline Phosphatase S- 102 (increase) (normal-39-117)
Alkaline Phosphatase S- 102 (increase) (normal-39-117)
T shot
IVIG
Weight 155.8 (decrease)
Day+ 609
Day+ 609
Today was a Doc Chen day.
Most of B’s labs were stable, although a few counts that should’ve gone down, went up, and vise versa.
His platelets and immune system numbers remain stellar! Yay!
But, his kidney numbers, Ferritin, Hematocrit and Hemoglobin all went the wrong way.
Darn it.
Because of his low Hematocrit and Hemoglobin counts, he was unable to have today’s scheduled phlebotomy.
This is unfortunate because his Ferritin rose once again.
B’s Immunoglobulin was low again on this set of labs, so he had another IVIG treatment today.
It went smoothly, with no issues or adverse reactions.
He’s had bad reactions to this treatment before, but thankfully not lately.
Because B’s blood counts can’t seem to handle the aggressive weekly phlebotomy schedule (we’ll try every other week now), Doc Chen feels he needs something additional to help get his dangerous ferritin levels down.
So, she is now considering giving B Exjade, an iron chelating drug. Last month she was against this drug, but now thinks it’s worth the risk.
My spidey senses are going crazy about this.
This drug can be very dangerous and I think it may be too dangerous for B.
It can adversely affect kidneys, the digestive track, skin, and bone marrow.
Really? The bone marrow? Ah, that quite frankly freaks me out.
His bone marrow is not something I think we should be messing with, and neither are his kidneys.
He is in remission from Myelodysplastic Syndrome, a bone marrow cancer.
And we know first hand kidney failure is not pretty. It nearly killed B after his transplant.
So I sent an email up to Doc Schriber with a link to the black box warnings on Exjade to get his opinion if it’s worth the risk.
Part of why Doc Chen wants to start this new drug is she believes B’s high iron stores may be affecting his heart.
She went over the echocardiogram he had done a few weeks ago and it indicated he has Stage 2 Diastolic Dysfunction.
We don’t know if this is old news or new news so I called Doc Faitelson’s (B’s cardiologist) office this morning and left a message asking him to look over the new echo.
B had an echo done with Doc F in March of this year and he will be able to tell us if B’s heart issues are worsening.
So, we’ll see how this all unfolds.
It seems it could end up being a damned if you do, damned if you don't scenario if his heart is indeed worsening.
Fingers and toes crossed we get good news.
OCTOBER 8. 2014- Wednesday
Lab numbers: Labcorp (10/7)(CBC only)
Hemoglobin- 13.8 (increase) (normal-12.6-17.7)
Hematocrit- 40.9% (increase)(normal-37%-51%)
Hematocrit- 40.9% (increase)(normal-37%-51%)
Platelets- 182 (decrease) (normal-155-379)
Neutrophils- 4.2 (decrease) (normal-1.4-7.0)
White Blood Count- 6.6 (decrease) (normal-3.4-10.8)
Weight 158 (decrease)
Day+ 602
Today was a phlebotomy day and because B's hemoglobin and hematocrit numbers had rebounded nicely back into the normal zone, it was a go this time.
It went smoothly, no issues getting a good stick, and no issues with him bleeding.
Yay.
B had a flu shot last Thursday, and while I don't understand why a non-live vaccine would have any effect on his health, B did get a bit under the weather from Thursday afternoon through Sunday morning.
Ran a low fever off and on and generally felt funky, especially all day Saturday.
But he's feeling much better and with another successful phlebotomy under his belt, he's feeling even better yet.
He gets a bit anxious on phlebotomy days and is always relieved when it goes smoothly and it's behind him.
All's well for now, so 'til next week,
later gators.
Today was a phlebotomy day and because B's hemoglobin and hematocrit numbers had rebounded nicely back into the normal zone, it was a go this time.
It went smoothly, no issues getting a good stick, and no issues with him bleeding.
Yay.
B had a flu shot last Thursday, and while I don't understand why a non-live vaccine would have any effect on his health, B did get a bit under the weather from Thursday afternoon through Sunday morning.
Ran a low fever off and on and generally felt funky, especially all day Saturday.
But he's feeling much better and with another successful phlebotomy under his belt, he's feeling even better yet.
He gets a bit anxious on phlebotomy days and is always relieved when it goes smoothly and it's behind him.
All's well for now, so 'til next week,
later gators.
Lab numbers: Labcorp (9/29)
Hemoglobin- 11.4 (decrease) (normal-12.6-17.7) L
Hematocrit- 35.8% (decrease)(normal-37%-51%) L
Hematocrit- 35.8% (decrease)(normal-37%-51%) L
Platelets- 184 (increase) (normal-155-379)
Neutrophils- 5.8 (decrease) (normal-1.4-7.0)
White Blood Count- 8.7 (decrease) (normal-3.4-10.8)
Ferritin- 2365 (decrease) (normal- 30-400) H
Flu shot
Creatinine- 1.68 (increase) (normal-0.76-1.27) H
BUN- 18 (decrease) (normal 8-27)
eGFR- 42 (decrease) (normal above 59) L
eGFR- 42 (decrease) (normal above 59) L
Potassium- 5.0 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 93 (decrease) (normal-39-117)
Alkaline Phosphatase S- 93 (decrease) (normal-39-117)
Flu shot
Weight 159 (increase)
Day+ 596
Yesterday was a scheduled phlebotomy day, but I called it off when I saw how low B's Hemoglobin and Hematocrit numbers had fallen to.
The nurses were ready to proceed, based on how high B's ferritin levels remain, but I was not at all comfy with how low the other numbers had gotten, so I made the call and told them we were going to skip this week's phlebotomy.
I figured I'd run my decision to call it off by Doc Schriber at today's visit with him.
I want to be sure I have the correct grasp on the blood count parameters as we try to proceed with these weekly phlebotomies.
Happily at today's Scottsdale Transplant Center's visit, Doc Schriber said I made the right call. Yay!
Let me say that this is in no way meant to reflect poorly on the Az Oncology nurses decision to go ahead, because they were within the parameters they follow with most of their phlebotomy patients. But because of transplant, B is a bit different.
They were cool with me wanting to wait, and in fact were thanking me for making the call, as they are not familiar with B's history, and want to do right by him.
The two back to back phlebotomies done so far did lower his ferritin by 600+, so I'm comfy we can find a schedule that lowers the ferritin without stressing his other blood counts.
Maybe by next week, his numbers will have rebounded well enough to do another one.
So it's been two weeks since our scary Doc Chen visit that raised a number of concerns for us.
I'm reminded of an old German proverb-
fear always makes the wolf larger than he is.
We left that Doc Chen visit pretty darned frightened, but thankfully, by the next morning we had recovered our normal optimistic attitudes.
We got 'present in the moment', and got on with having the best moments and days we could as we waited for resolution to the scary issues raised at that appointment.
We did not spend these last two weeks mired in worry about the unknown.
We actually had a wonderful two weeks, filled with lots of good and positive things.
And that gigantic wolf that frightened us that Wednesday two weeks ago, proved to be nothing more than a puppy. A toothless puppy.
Almost every issue resolved nicely, with not much to worry about.
First, Doc Chen wanted to start doing weekly phlebotomies, and though that may prove to be a bit too aggressive a schedule for B's blood to handle, she's right on that we need to try to do it as often as possible. With these extra phlebotomies, his ferritin is finally dropping.
The fear we had about this was that Doc Chen also wanted to get a new central line installed in B for all these phlebotomies.
While I feel sorry for B that he has to get stuck every week, my spidey senses were telling me that, with B's history of infection in just about every central line he's had in the past, a new central line was not a good idea.
Today, Doc Schriber agreed with my instincts that a new central line in B is not worth the risk of infection.
So no surgery will be necessary. Yay!
Next, Doc Chen had added a Lymphoma marker to be done with this week's labs.
Happily, that number came back within normal parameters. Another Yay!
Finally, Doc Chen had heard something funny in B's heart beat two weeks ago.
So B had an echocardiogram done this last Monday. We still haven't heard anything yet on those results, but hope that not hearing anything right away is a good sign that he's not in imminent danger.
I also asked Doc Schriber to give B's ticker a listen and all he heard was a murmur, which B has had for years. So fingers crossed, the final result of the echo will be unremarkable.
B's labs were mostly okay this week. His platelets remain stellar.
His Alk Phos is holding steady without the liver drug we stopped last month. That's good.
The kidney labs went backwards a bit, but not in an alarming way, so no worries there.
All in all, good labs.
Doc Schriber does want to try nudging B down just a bit more on his anti-rejection medicine Prednisone.
Remember Prednisone? I call it the evil drug, because of it's many adverse side effects.
But, since transplant, it's been a necessary evil as part of the regimen to keep B's and his donor's cells happily coexisting.
Slowly, ever so slowly, Doc S has been lowering the dose and now we're going to try to go down even a bit more.
He told me what to watch for and if I see signs of the dreaded Graft vs Host disease, we'll jump back up to the normal dose.
So friends, we had a splendid day at the Doc's today.
Much, much better than two weeks ago.
B's been immersed in music, both with practices and gigs out and about, and it's been so darn fun.
Precious music, precious friends, precious times.
Giving thanks, for so many things.
SEPTEMBER 24. 2014- Wednesday
Day+ 596
Yesterday was a scheduled phlebotomy day, but I called it off when I saw how low B's Hemoglobin and Hematocrit numbers had fallen to.
The nurses were ready to proceed, based on how high B's ferritin levels remain, but I was not at all comfy with how low the other numbers had gotten, so I made the call and told them we were going to skip this week's phlebotomy.
I figured I'd run my decision to call it off by Doc Schriber at today's visit with him.
I want to be sure I have the correct grasp on the blood count parameters as we try to proceed with these weekly phlebotomies.
Happily at today's Scottsdale Transplant Center's visit, Doc Schriber said I made the right call. Yay!
Let me say that this is in no way meant to reflect poorly on the Az Oncology nurses decision to go ahead, because they were within the parameters they follow with most of their phlebotomy patients. But because of transplant, B is a bit different.
They were cool with me wanting to wait, and in fact were thanking me for making the call, as they are not familiar with B's history, and want to do right by him.
The two back to back phlebotomies done so far did lower his ferritin by 600+, so I'm comfy we can find a schedule that lowers the ferritin without stressing his other blood counts.
Maybe by next week, his numbers will have rebounded well enough to do another one.
So it's been two weeks since our scary Doc Chen visit that raised a number of concerns for us.
I'm reminded of an old German proverb-
fear always makes the wolf larger than he is.
We left that Doc Chen visit pretty darned frightened, but thankfully, by the next morning we had recovered our normal optimistic attitudes.
We got 'present in the moment', and got on with having the best moments and days we could as we waited for resolution to the scary issues raised at that appointment.
We did not spend these last two weeks mired in worry about the unknown.
We actually had a wonderful two weeks, filled with lots of good and positive things.
And that gigantic wolf that frightened us that Wednesday two weeks ago, proved to be nothing more than a puppy. A toothless puppy.
Almost every issue resolved nicely, with not much to worry about.
First, Doc Chen wanted to start doing weekly phlebotomies, and though that may prove to be a bit too aggressive a schedule for B's blood to handle, she's right on that we need to try to do it as often as possible. With these extra phlebotomies, his ferritin is finally dropping.
The fear we had about this was that Doc Chen also wanted to get a new central line installed in B for all these phlebotomies.
While I feel sorry for B that he has to get stuck every week, my spidey senses were telling me that, with B's history of infection in just about every central line he's had in the past, a new central line was not a good idea.
Today, Doc Schriber agreed with my instincts that a new central line in B is not worth the risk of infection.
So no surgery will be necessary. Yay!
Next, Doc Chen had added a Lymphoma marker to be done with this week's labs.
Happily, that number came back within normal parameters. Another Yay!
Finally, Doc Chen had heard something funny in B's heart beat two weeks ago.
So B had an echocardiogram done this last Monday. We still haven't heard anything yet on those results, but hope that not hearing anything right away is a good sign that he's not in imminent danger.
I also asked Doc Schriber to give B's ticker a listen and all he heard was a murmur, which B has had for years. So fingers crossed, the final result of the echo will be unremarkable.
B's labs were mostly okay this week. His platelets remain stellar.
His Alk Phos is holding steady without the liver drug we stopped last month. That's good.
The kidney labs went backwards a bit, but not in an alarming way, so no worries there.
All in all, good labs.
Doc Schriber does want to try nudging B down just a bit more on his anti-rejection medicine Prednisone.
Remember Prednisone? I call it the evil drug, because of it's many adverse side effects.
But, since transplant, it's been a necessary evil as part of the regimen to keep B's and his donor's cells happily coexisting.
Slowly, ever so slowly, Doc S has been lowering the dose and now we're going to try to go down even a bit more.
He told me what to watch for and if I see signs of the dreaded Graft vs Host disease, we'll jump back up to the normal dose.
So friends, we had a splendid day at the Doc's today.
Much, much better than two weeks ago.
B's been immersed in music, both with practices and gigs out and about, and it's been so darn fun.
Precious music, precious friends, precious times.
Giving thanks, for so many things.
SEPTEMBER 24. 2014- Wednesday
Lab numbers: Az Onc (9/24)
Hemoglobin- 13.2 (decrease) (normal-12.6-17.7)
Hematocrit- 41.6% (decrease)(normal-37%-51%)
Hematocrit- 41.6% (decrease)(normal-37%-51%)
Platelets- 182 (increase) (normal-155-379)
Neutrophils- 6.8 (increase) (normal-1.4-7.0)
White Blood Count- 9.5 (increase) (normal-3.4-10.8)
Weight 158 (unchanged)
Phlebotomy
Day+ 588
Today was a Phlebotomy day.
At last week's Doc Chen visit, it was decided that weekly phlebotomies were the best course of action to get B's crazy high ferritin levels down.
Not sure if his blood counts will let this happen so often, but as long as his Hematocrit and Hemoglobin stay normal, he'll be doing this weekly.
Doc had order STAT labs be done before doing the phlebotomy, but insurance issues kept that from happening this week.
But, Doc felt confident that B's counts were high enough to proceed, so phlebotomy went ahead as scheduled. Labs (not STAT) results shown above were drawn after the procedure and his counts were fine even after losing a pint.
We now have a plan in place so that future phlebotomies will have labs drawn prior to the procedure.
The nurse had no issues getting him stuck and getting a good flow going at this visit.
This has been an issue in the past. We are in the process of evaluating if B should have a new central line installed at some point because of the frequency that these phlebotomies are planned.
Not sure yet when, or if, that will occur.
He's got his echocardiogram appointment scheduled for this week so we'll know soon what it was Doc Chen thought she heard at last week's visit.
Hopeful it will reveal nothing significant.
After a downer of a day last Wednesday, we happily awoke the next day with our normal, optimistic spirits intact.
This last week has been filled with music and laughter and many other good things.
Thankful for finding the resilience needed to keep things light and thankful for our wonderful friends, who keep B busy and happy with the music he loves.
Peace.
Phlebotomy
Day+ 588
Today was a Phlebotomy day.
At last week's Doc Chen visit, it was decided that weekly phlebotomies were the best course of action to get B's crazy high ferritin levels down.
Not sure if his blood counts will let this happen so often, but as long as his Hematocrit and Hemoglobin stay normal, he'll be doing this weekly.
Doc had order STAT labs be done before doing the phlebotomy, but insurance issues kept that from happening this week.
But, Doc felt confident that B's counts were high enough to proceed, so phlebotomy went ahead as scheduled. Labs (not STAT) results shown above were drawn after the procedure and his counts were fine even after losing a pint.
We now have a plan in place so that future phlebotomies will have labs drawn prior to the procedure.
The nurse had no issues getting him stuck and getting a good flow going at this visit.
This has been an issue in the past. We are in the process of evaluating if B should have a new central line installed at some point because of the frequency that these phlebotomies are planned.
Not sure yet when, or if, that will occur.
He's got his echocardiogram appointment scheduled for this week so we'll know soon what it was Doc Chen thought she heard at last week's visit.
Hopeful it will reveal nothing significant.
After a downer of a day last Wednesday, we happily awoke the next day with our normal, optimistic spirits intact.
This last week has been filled with music and laughter and many other good things.
Thankful for finding the resilience needed to keep things light and thankful for our wonderful friends, who keep B busy and happy with the music he loves.
Peace.
Lab numbers: Labcorp (9/15)
Hemoglobin- 14.7 (increase) (normal-12.6-17.7)
Hematocrit- 44.0% (normal-37%-51%)
Hematocrit- 44.0% (normal-37%-51%)
Platelets- 163 (decrease) (normal-155-379)
Neutrophils- 4.8 (unchanged) (normal-1.4-7.0)
White Blood Count- 8.5 (increase) (normal-3.4-10.8)
Creatinine- 1.45 (unchanged) (normal-0.76-1.27) H
BUN- 19 (increase) (normal 8-27)
eGFR- 51 (unchanged) (normal above 59) L
eGFR- 51 (unchanged) (normal above 59) L
Potassium- 4.2 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 107 (increase) (normal-39-117)
Ferritin- 2984 (increase) (normal- 30-400) H
Weight 158 (unchanged)
Phlebotomy
T shot
Day+ 581
Alkaline Phosphatase S- 107 (increase) (normal-39-117)
Ferritin- 2984 (increase) (normal- 30-400) H
Weight 158 (unchanged)
Phlebotomy
T shot
Day+ 581
We had an amazing four days with B's donor and her family.
Amazing. It was almost otherworldly it was so perfect.
We connected instantly on a 'I feel like I've known you my whole life' level. An easy, comfortable visit that was over way too soon.
We love these new members of our family.
I was so happy B was able to put together the stamina needed to make it through the four long, jam packed days. He was toast when it was over, and has spent a good deal of time nappin' this last week.
Here she is! Our amazing donor Cori (in the middle) and her family!
Cori and Brian were interviewed by 5 Phoenix TV stations and one radio station.
It really was an amazing weekend.
But now, it's back to reality, and today, reality bites.
I've had an underlying feeling of dread this last week, and darn it, today's Doc Chen visit has me thinking my intuition's been right. We may have some rough waters ahead again.
I'm trying to breathe, stay in the moment, not panic, and all that stuff, but dang I'm a bit nervous right now.
I think I mention in most of my updates that B's been doing mostly okay, except for his crazy fatigue and his ongoing pain issues. But lately, he's also having occasional spells of being lightheaded and slightly dizzy. He's also been even more tired and weak than usual and his appetite's become really poor. He just hasn't seemed 'right' somehow. I know seeing him weaker than usual has contributed to this undercurrent of dread I've been feeling.
Well, Doc Chen heard something she didn't like when listening to his heart today and she thinks it's misbehaving. She thinks that might explain his extreme fatigue and lightheadedness symptoms.
I asked her if what she heard sounded valve related ('cause we know he has valve issues), but she said "no" that wasn't what she was hearing. She said it sounded like his heart wasn't contracting strongly. Not like a blockage or a heart attack thing, but more like a heart failure thing. Dang, I sure hope she's hearing things that aren't there.
So, it's off to the cardiologist for an echocardiogram ASAP. Hopefully this week if we can get in.
She's also scheduled an extra lab test, a Lymphoma marker, just to rule out that his Lymphoma hasn't returned. Really? I can't even go there right now. My brain can't even handle that word so I'm putting that crazy thought right out of my head for now. Nope, not even going there unless I have to.
A bit of good news today was that almost all of B's lab results today were stellar. Kidneys are behaving nicely, red blood and platelet levels remain good which indicates the MDS seems to still be in remission. Thank goodness for that.
But, B's ferritin levels went up yet again. A lot.
I had already planned to bring up his ongoing, crazy high ferritin levels at today's visit and was going to question what else, besides phlebotomy, could be done to lower them.
Research I've done this last week about ferritin levels as high as B's say it can cause joint pain (which he has) and neuropathy (which he has) and fatigue (which he has). It can also permanently damage the heart, which I'm hoping he doesn't have.
Iron chelating drugs are out. They are really tough on kidneys, so phlebotomy remains the only treatment available.
Doc Chen agrees that something more aggressive needs to be done so she'd like to start doing weekly (instead of monthly) phlebotomies for as long as it takes (months, not weeks) to get these ferritin levels down.
But after all that his veins have been through these last few years, it's almost impossible to get a good stick that allows him to bleed, so she thinks he needs to have a new central line, placed surgically, for all these phlebotomies she has planned.
Perhaps a new port-a-cath (he's had 3 in the past) or a Pic line (he's had two before) or a Groshong line (he's not had one of these before).
But first, we need the heart Doc to make sure all's okay with B's ticker so he can safely have the surgery required to place one of these lines. And I also want to run placing a central line by Doc Schriber too because these things are notorious for causing blood infections (which B has had at least 3 or 4 times from previous central lines). So I'll call Scottsdale tomorrow.
So, today was ugh. Just ugh.
We are a bit freaked out by words we heard today. We don't like words like Lymphoma, or Surgery or Central Lines or Heart Problems.
Once again, we'll try to regain our composure and gather our strength for whatever's ahead.
Because B's been feeling so weak and tired, he's a bit more freaked out than usual.
But I'm trying to calm him by reminding him that we've heard doom and gloom stuff before, and he's gotten through it. He'll get through this.
We can't predict the outcomes of what's ahead, but we can try to find a way to not let terror rule our minutes, hours and days. To make the 'right now' count. We've done it before and we can do it again.
Conversations between B and me this afternoon have a deja vu feel to them. Pep talks about hope, don't get discouraged, and don't get ahead of ourselves. Even keel. Stay calm.
I'm going to picture the waters ahead having his heart being just fine, that there's no freakin' way his Lymphoma's returned, that a central line will be problem free and the phlebotomies done over the next few months will make him start feeling better than he has for a long time.
Yep.
That's what I'm going to picture because that's the way it has to be.
In the meantime, in your talks with your higher powers, could you put in a good word for B again.
We'd appreciate it.
SEPTEMBER 4. 2014- Thursday
Lab numbers: Labcorp (9/2)
Hemoglobin- 14.5 (increase) (normal-12.6-17.7)
Platelets- 164 (decrease) (normal-155-379)
Neutrophils- 4.8 (decrease) (normal-1.4-7.0)
White Blood Count- 7.8 (decrease) (normal-3.4-10.8)
Creatinine- 1.45 (decrease) (normal-0.76-1.27) H
BUN- 12 (decrease) (normal 8-27)
eGFR- 51 (increase) (normal above 59) L
eGFR- 51 (increase) (normal above 59) L
Potassium- 4.1 (decrease) (normal 3.5-5.2)
Alkaline Phosphatase S- 100 (unchanged) (normal-39-117)
Ferritin- 2776 (decrease) (normal- 30-400) H
Weight 158 (unchanged)
Day+ 568
Today's visit with Doc Schriber kicks off what is bound to be quite an exciting and emotional four day weekend.
Tomorrow is the annual Celebration of Life, an event that pays tribute to the survivors of transplant and all the folks at the Scottsdale Healthcare Cancer Transplant Institute who have had a hand in helping those survivors through each of their individual journeys.
B went to last year's event as an 7 month survivor, and it fills me with so much gratitude and emotion that we can add a whole year of survival to his amazing journey.
The Celebration of Life is usually quite an emotional event all on it's own, but this year's event will be even more so as... ...wait for it... ...we are to meet B's donor this afternoon!
The Scottsdale Healthcare Cancer Transplant Institute is flying the donor and her family in from Seattle this afternoon, where at this year's event, both she and B will be the featured guests and speakers.
We've arranged to have a private meeting/dinner with them tonight so we can start to get to know them.
Tomorrow morning we meet up again at the Cancer Transplant Institute where the local Phoenix media will interview them both, to be followed by the Celebration of Life luncheon/celebration.
Then we are bringing her and her family back to Tucson with us, where we have planned to get as many friends and family together as we can fit in our small house for a party Saturday night in her honor.
Should be tons of fun!
But the first step in our 4 day adventure is today's visit with Doc Schriber. We've been hoping all of B's labs remain stable and that he has a good check-up.
And the results are in. Good labs and a good check-up all around! Yay!
His kidney numbers are the best they've been in a long time. Perhaps Doc Chen's lecture on food dyes and how bad they are for kidneys a few months ago is helping. I check labels for food dyes all the time now and if a beverage or food has them, B doesn't get it. Maybe that's helped.
Anyway, we are so looking forward to these next few days of celebration.
On any given day, B still feels iffy from hour to hour as far as feeling good goes, but I've got faith he'll mostly feel okay, as well as have enough stamina, to enjoy these monumental next four days.
Fingers crossed.
I update again soon to let you know how everything goes.
Now it's time to go meet an earth angel and her family.
Wow!
Peace.
Alkaline Phosphatase S- 100 (unchanged) (normal-39-117)
Ferritin- 2776 (decrease) (normal- 30-400) H
Weight 158 (unchanged)
Day+ 568
Today's visit with Doc Schriber kicks off what is bound to be quite an exciting and emotional four day weekend.
Tomorrow is the annual Celebration of Life, an event that pays tribute to the survivors of transplant and all the folks at the Scottsdale Healthcare Cancer Transplant Institute who have had a hand in helping those survivors through each of their individual journeys.
B went to last year's event as an 7 month survivor, and it fills me with so much gratitude and emotion that we can add a whole year of survival to his amazing journey.
The Celebration of Life is usually quite an emotional event all on it's own, but this year's event will be even more so as... ...wait for it... ...we are to meet B's donor this afternoon!
The Scottsdale Healthcare Cancer Transplant Institute is flying the donor and her family in from Seattle this afternoon, where at this year's event, both she and B will be the featured guests and speakers.
We've arranged to have a private meeting/dinner with them tonight so we can start to get to know them.
Tomorrow morning we meet up again at the Cancer Transplant Institute where the local Phoenix media will interview them both, to be followed by the Celebration of Life luncheon/celebration.
Then we are bringing her and her family back to Tucson with us, where we have planned to get as many friends and family together as we can fit in our small house for a party Saturday night in her honor.
Should be tons of fun!
But the first step in our 4 day adventure is today's visit with Doc Schriber. We've been hoping all of B's labs remain stable and that he has a good check-up.
And the results are in. Good labs and a good check-up all around! Yay!
His kidney numbers are the best they've been in a long time. Perhaps Doc Chen's lecture on food dyes and how bad they are for kidneys a few months ago is helping. I check labels for food dyes all the time now and if a beverage or food has them, B doesn't get it. Maybe that's helped.
Anyway, we are so looking forward to these next few days of celebration.
On any given day, B still feels iffy from hour to hour as far as feeling good goes, but I've got faith he'll mostly feel okay, as well as have enough stamina, to enjoy these monumental next four days.
Fingers crossed.
I update again soon to let you know how everything goes.
Now it's time to go meet an earth angel and her family.
Wow!
Peace.
AUGUST 12. 2014- Tuesday
Lab numbers: Labcorp (8/11)
Hemoglobin- 14.1 (unchanged) (normal-12.6-17.7)
Platelets- 174 (decrease) (normal-155-379)
Neutrophils- 5.6 (increase) (normal-1.4-7.0)
White Blood Count- 8.3 (decrease) (normal-3.4-10.8)
Creatinine- 1.6 (decrease) (normal-0.76-1.27) H
BUN- 13 (decrease) (normal 8-27)
eGFR- 45 (increase) (normal above 59) L
eGFR- 45 (increase) (normal above 59) L
Potassium- 4.4 (decrease) (normal 3.5-5.2)
Alkaline Phosphatase S- 100 (decrease) (normal-39-117)
Ferritin- 2851 (decrease) (normal- 30-400) H
Weight 158 (unchanged)
Day+ 545
Another Doc Scriber visit.
B's stable, with most labs improving a smidge.
His cellulitis has responded to the antibiotic and he's feeling better.
The Doc wants him to do another 10 day round of the antibiotic to be on the safe side. His kidney labs didn't show any adverse effects with the first 10 days of antibiotics, so he should be fine.
Cellulitis can be a bad thing, so we're glad he's responding to treatment and doing okay all around.
Really, not much to report this time.
And I guess that's a good thing.
Peace.
Alkaline Phosphatase S- 100 (decrease) (normal-39-117)
Ferritin- 2851 (decrease) (normal- 30-400) H
Weight 158 (unchanged)
Day+ 545
Another Doc Scriber visit.
B's stable, with most labs improving a smidge.
His cellulitis has responded to the antibiotic and he's feeling better.
The Doc wants him to do another 10 day round of the antibiotic to be on the safe side. His kidney labs didn't show any adverse effects with the first 10 days of antibiotics, so he should be fine.
Cellulitis can be a bad thing, so we're glad he's responding to treatment and doing okay all around.
Really, not much to report this time.
And I guess that's a good thing.
Peace.
JULY 30. 2014- Wednesday
Lab numbers: Labcorp (7/28)
Hemoglobin- 14.1 (increase) (normal-12.6-17.7)
Platelets- 175 (decrease) (normal-155-379)
Neutrophils- 5.6 (increase) (normal-1.4-7.0)
White Blood Count- 8.5 (increase) (normal-3.4-10.8)
Creatinine- 1.72 (increase) (normal-0.76-1.27) H
BUN- 15 (decrease) (normal 8-27)
eGFR- 41 (decrease) (normal above 59) L
eGFR- 41 (decrease) (normal above 59) L
Potassium- 4.5 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 104 (increase) (normal-39-117)
Ferritin- 2867 (increase) (normal- 30-400) H
Weight 158 (increase)
Day+ 532
A Doc Chen day.
Labs are okay, although the kidney labs crept in the wrong direction despite B stopping the kidney unfriendly anti-rejection drug Tacrolimus a month ago. We were hoping those numbers would improve, but they didn't.
The Graft vs. Host disease that he's had on his arms since the get go is a bit worse today, but not alarmingly so. I sure hope he can stay off this drug. Doc Scriber said we're still early in the process of potential problems with Graft vs. Host post Tacrolimus, so we remain watchful.
Fingers crossed no big issues crop up in the near future.
Anyway, at today's visit, as Doc Chen was catching up on how B's been feeling, he took a drink from his blue Gatorade.
Doc Chen about had a cow when she saw him drinking that bright turquoise beverage and proceeded to lecture both of us about food dyes and their effect on kidneys. I know in my head and gut that it's not good to consume these unusual, unnatural colors, but he won't drink enough in a day if it doesn't have flavor. And I'm tasked with getting him to drink, so I have taken the easy route, getting him what he likes. Needless to say, I'm now in search of a more friendly, clear, flavored beverage for B.
He has to drink quite a bit in a day, and simply doesn't like plain water. He will drink a bottle of plain water a day, but I'm far more successful at getting him to drink what he needs each day if the beverage has flavor.
I'm sure I'll find a suitable solution. I think Doc Chen scared him enough that he'll give a healthier beverage a whirl, even if it isn't on his Favorites list.
B started this day feeling okay, but as the day progressed, he started to fade.
He was scheduled for phlebotomy this afternoon, but about an hour before that appointment he started feeling quite yukky. Clammy, nauseous, weak, in fact I thought he might even faint he was so feeling so strange, so I cancelled the phlebotomy and brought him home.
Home, a good nap and some food did the trick and a few hours later he was feeling much better. Thank goodness. I wasn't sure if we were heading into uncharted rough waters and was very relieved he recovered.
In fact, he had a band practice scheduled tonight that he had wanted me to cancel at the height of his illness today, but I didn't, thinking that he might feel better later.
Music for him is healing, vital in fact, and if he goes too long without it, it shows on him physically. So, I figured I'd have plenty of time to cancel if he didn't get better, but he did. And now he's in our living room having a blast making noise with the boys.
And I'm digging the background music as I get B's Journey updated.
From Beatles to John Hiatt, they're playing it all tonight.
Every day is an adventure as we navigate the highs and lows of post-transplant life.
Happy we're ending today on a high.
Peace.
Postscript, Thursday morning July 31:
Turns out B was getting sick even as he was enjoying his evening of music with the boys in his band. After everyone had left, he showed me his knee, which was hurting and itching.
It was bright red, quite swollen and hot to the touch.
I was ready to call a Doc right then and there, but B convinced me to wait 'til morning to see if it got better. It hasn't, so a call was place to our Scottsdale team.
First guess is cellulitis or gout.
He's started an antibiotic and will get labs done later today.
So much for ending last night on a high note.
Update, Friday August 1:
We went to the eastside Az Oncology this afternoon to attempt a make-up phlebotomy since he had missed Wednesday's scheduled phlebotomy.
Ugh. They were unable to get a blood flow, despite three sticks, from 3 different nurses. He simply wouldn't bleed. So, no phlebotomy.
While we were there though, the nurses took a look at his swollen knee and they added a uric acid level lab to rule out gout. Doc Chen has ordered an immunoglobulin test also.
The nurses said it looked like gout, but thought he'd be in much more pain if it were indeed that.
So, no definitive diagnosis yet. The knee is still swollen, hot and red. Cellulitis is still on the table.
Boy, I wish he could catch a break. He feels plain yukky. Gonna be a long weekend.
Update, Monday August 4:
The labs done on Friday showed no excessive uric acid level, so gout has been ruled out.
The consensus is cellulitis, and he is responding to the antibiotic quite well. The knee is definitely getting better.
The immunoglobulin test came back with low results all around.
Real low.
So Doc Chen had B go in for an IVIG infusion today.
He had the 5 hour infusion done in the chemo pod at Az Oncology.
I have to say, inside I was a bit of an emotional wreck while we were back in that infusion pod.
Too many memories of too many hours spent in that pod during the 16 months that B had MDS.
I had to keep reminding myself everything is okay.
This is not chemo. This is not a transfusion. This is not IV antibiotics to fight a blood infection. This is not going to be a regular thing.
Keep calm, breathe.
B has had an IVIG infusion twice before during those 16 months with MDS and both times, he had an adverse, scary reaction to the treatment. So I was nervous on that level too.
But, thankfully, this time, everything went smoothly. No reaction, no worries.
I was super glad when it was finally done and we could get the heck out of there.
It made me ever so aware of how lucky B is and how far he's come.
Feeling grateful.
Thank you C for your gift of life.
Alkaline Phosphatase S- 104 (increase) (normal-39-117)
Ferritin- 2867 (increase) (normal- 30-400) H
Weight 158 (increase)
Day+ 532
A Doc Chen day.
Labs are okay, although the kidney labs crept in the wrong direction despite B stopping the kidney unfriendly anti-rejection drug Tacrolimus a month ago. We were hoping those numbers would improve, but they didn't.
The Graft vs. Host disease that he's had on his arms since the get go is a bit worse today, but not alarmingly so. I sure hope he can stay off this drug. Doc Scriber said we're still early in the process of potential problems with Graft vs. Host post Tacrolimus, so we remain watchful.
Fingers crossed no big issues crop up in the near future.
Anyway, at today's visit, as Doc Chen was catching up on how B's been feeling, he took a drink from his blue Gatorade.
Doc Chen about had a cow when she saw him drinking that bright turquoise beverage and proceeded to lecture both of us about food dyes and their effect on kidneys. I know in my head and gut that it's not good to consume these unusual, unnatural colors, but he won't drink enough in a day if it doesn't have flavor. And I'm tasked with getting him to drink, so I have taken the easy route, getting him what he likes. Needless to say, I'm now in search of a more friendly, clear, flavored beverage for B.
He has to drink quite a bit in a day, and simply doesn't like plain water. He will drink a bottle of plain water a day, but I'm far more successful at getting him to drink what he needs each day if the beverage has flavor.
I'm sure I'll find a suitable solution. I think Doc Chen scared him enough that he'll give a healthier beverage a whirl, even if it isn't on his Favorites list.
B started this day feeling okay, but as the day progressed, he started to fade.
He was scheduled for phlebotomy this afternoon, but about an hour before that appointment he started feeling quite yukky. Clammy, nauseous, weak, in fact I thought he might even faint he was so feeling so strange, so I cancelled the phlebotomy and brought him home.
Home, a good nap and some food did the trick and a few hours later he was feeling much better. Thank goodness. I wasn't sure if we were heading into uncharted rough waters and was very relieved he recovered.
In fact, he had a band practice scheduled tonight that he had wanted me to cancel at the height of his illness today, but I didn't, thinking that he might feel better later.
Music for him is healing, vital in fact, and if he goes too long without it, it shows on him physically. So, I figured I'd have plenty of time to cancel if he didn't get better, but he did. And now he's in our living room having a blast making noise with the boys.
And I'm digging the background music as I get B's Journey updated.
From Beatles to John Hiatt, they're playing it all tonight.
Every day is an adventure as we navigate the highs and lows of post-transplant life.
Happy we're ending today on a high.
Peace.
Postscript, Thursday morning July 31:
Turns out B was getting sick even as he was enjoying his evening of music with the boys in his band. After everyone had left, he showed me his knee, which was hurting and itching.
It was bright red, quite swollen and hot to the touch.
I was ready to call a Doc right then and there, but B convinced me to wait 'til morning to see if it got better. It hasn't, so a call was place to our Scottsdale team.
First guess is cellulitis or gout.
He's started an antibiotic and will get labs done later today.
So much for ending last night on a high note.
Update, Friday August 1:
We went to the eastside Az Oncology this afternoon to attempt a make-up phlebotomy since he had missed Wednesday's scheduled phlebotomy.
Ugh. They were unable to get a blood flow, despite three sticks, from 3 different nurses. He simply wouldn't bleed. So, no phlebotomy.
While we were there though, the nurses took a look at his swollen knee and they added a uric acid level lab to rule out gout. Doc Chen has ordered an immunoglobulin test also.
The nurses said it looked like gout, but thought he'd be in much more pain if it were indeed that.
So, no definitive diagnosis yet. The knee is still swollen, hot and red. Cellulitis is still on the table.
Boy, I wish he could catch a break. He feels plain yukky. Gonna be a long weekend.
Update, Monday August 4:
The labs done on Friday showed no excessive uric acid level, so gout has been ruled out.
The consensus is cellulitis, and he is responding to the antibiotic quite well. The knee is definitely getting better.
The immunoglobulin test came back with low results all around.
Real low.
So Doc Chen had B go in for an IVIG infusion today.
He had the 5 hour infusion done in the chemo pod at Az Oncology.
I have to say, inside I was a bit of an emotional wreck while we were back in that infusion pod.
Too many memories of too many hours spent in that pod during the 16 months that B had MDS.
I had to keep reminding myself everything is okay.
This is not chemo. This is not a transfusion. This is not IV antibiotics to fight a blood infection. This is not going to be a regular thing.
Keep calm, breathe.
B has had an IVIG infusion twice before during those 16 months with MDS and both times, he had an adverse, scary reaction to the treatment. So I was nervous on that level too.
But, thankfully, this time, everything went smoothly. No reaction, no worries.
I was super glad when it was finally done and we could get the heck out of there.
It made me ever so aware of how lucky B is and how far he's come.
Feeling grateful.
Thank you C for your gift of life.
Lab numbers: Labcorp (7/14)
Hemoglobin- 13.2 (increase) (normal-12.6-17.7)
Platelets- 196 (increase) (normal-155-379)
Neutrophils- 4.6 (decrease) (normal-1.4-7.0)
White Blood Count- 7.9 (decrease) (normal-3.4-10.8)
Creatinine- 1.52 (decrease) (normal-0.76-1.27) H
BUN- 16 (decrease) (normal 8-27)
eGFR- 48 (increase) (normal above 59) L
eGFR- 48 (increase) (normal above 59) L
Potassium- 4.1 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 94 (decrease) (normal-39-117)
Ferritin- 2749 (increase) (normal- 30-400) H
Weight 155 (decrease)
Alkaline Phosphatase S- 94 (decrease) (normal-39-117)
Ferritin- 2749 (increase) (normal- 30-400) H
Weight 155 (decrease)
Another Doc Schriber day.
He had us see him earlier than usual because of the discontinuation of one of B's anti-rejection meds, Tacrolimus.
Just being careful I guess, and that's a good thing.
So far, B continues to show no (new) signs of Graft vs. Host disease. Yay.
His liver labs remain stellar, in fact all his labs are pretty darn good.
His kidney labs are still not quite up to snuff, but they did improve ever so slightly, so no new worries there either.
His platelets were an astounding 196! Memories of his platelets being single digit (pre-transplant) are happily becoming distant memories.
Hard to believe we are at post transplant Day+519 too.
Time is flying.
We remain ever thankful to all who have helped B throughout his entire journey so far.
Friends, family, Docs and nurses, before and after transplant.
So so many have helped in oh so many ways.
Kindness abounds, and we will always be grateful.
JULY 3. 2014- Thursday
Lab numbers: Labcorp (6/30)
Hemoglobin- 13.1 (decrease) (normal-12.6-17.7)
Platelets- 176 (increase) (normal-155-379)
Neutrophils- 6.0 (increase) (normal-1.4-7.0)
White Blood Count- 8.7 (decrease) (normal-3.4-10.8)
Creatinine- 1.53 (decrease) (normal-0.76-1.27) H
BUN- 19 (decrease) (normal 8-27)
eGFR- 47 (increase) (normal above 59) L
eGFR- 47 (increase) (normal above 59) L
Potassium- 4.0 (decrease) (normal 3.5-5.2)
Alkaline Phosphatase S- 98 (decrease) (normal-39-117)
Ferritin- 2605 (decrease) (normal- 30-400) H
Weight 158 (increase)
Phlebotomy (Yesterday at eastside AO)
Alkaline Phosphatase S- 98 (decrease) (normal-39-117)
Ferritin- 2605 (decrease) (normal- 30-400) H
Weight 158 (increase)
Phlebotomy (Yesterday at eastside AO)
Saw Doc Schriber today.
Thankfully, these visits are becoming almost boring.
B is doing okay. His labs are stable, with both his kidney and ferritin numbers improving.
At our last visit, the Doc decided B should try to stop taking the anti-rejection med Tacrolimus. It's hard on kidneys and it also makes one prone to squamous cell skin cancers. B has had an abnormal amount of this type skin cancer since his transplant, requiring him to see the skin Doc almost monthly to keep on top of it.
So, B stopped taking Tacrolimus on June 22. We are now in a watchful mode to make sure he doesn't start to develop the dreaded Graft Vs. Host disease. We will actually see Doc Scriber a bit more these next few months just to be sure all's well.
So far, after just 10 days off the Tacrolimus, he's still doing fine. His liver labs are great. One way GVH can show up is to attack the liver, so normal liver labs are good news.
A highlight of today's visit was B getting the green light to add fresh onions to the
foods-he-CAN-eat list. He's so excited, he can't wait to have a burger, with fresh onions (of course), and since this weekend is the 4th of July, a traditional BBQ holiday, I don't think he'll be waiting long. He still can't have lettuce or tomato, but he's slowly inching closer to that burger he's been dreaming of. Simple pleasures.
This September, The Scottsdale Transplant Center is having their annual Celebration of Life (for all the survivors of Bone Marrow Transplants that their team has done these last 16 years.) They have asked me if they can use an image of my painting 'White Gerbera' on all the printed materials they will send out this year. Of course I'm good with this, in fact, I'm honored.
Also, for this same Celebration of Life event, they are making arrangements to bring B and his donor together for the first time. They are paying to fly the donor and her family out for the weekend, putting all of us up at the same hotel the day before the event, so we can have some time to become acquainted. It's going to be a very moving weekend. We're so excited!
So friends, all in all, all is good.
Thanks for keeping B in your thoughts and prayers.
You continue to lift us up.
JUNE 18. 2014- Wednesday
Lab numbers: Labcorp (6/16)
Hemoglobin- 14.6 (increase) (normal-12.6-17.7)
Platelets- 157 (increase) (normal-155-379)
Neutrophils- 5.7 (increase) (normal-1.4-7.0)
White Blood Count- 9.5 (increase) (normal-3.4-10.8)
Creatinine- 1.65 (decrease) (normal-0.76-1.27) H
BUN- 22 (decrease) (normal 8-27)
eGFR- 43 (increase) (normal above 59) L
eGFR- 43 (increase) (normal above 59) L
Potassium- 4.2 (decrease) (normal 3.5-5.2)
Alkaline Phosphatase S- 112 (increase) (normal-39-117)
Iron, serum- 81 (unchanged) (normal- 40-155)
Iron saturation- 34 (increase) (normal- 15-55)
Ferritin- 3029 (increase) (normal- 30-400) H
Weight 156 (decrease)
T shot
Phlebotomy
Alkaline Phosphatase S- 112 (increase) (normal-39-117)
Iron, serum- 81 (unchanged) (normal- 40-155)
Iron saturation- 34 (increase) (normal- 15-55)
Ferritin- 3029 (increase) (normal- 30-400) H
Weight 156 (decrease)
T shot
Phlebotomy
A pretty uneventful visit with Doc Chen today.
Very routine.
After the ups and downs we've experienced these last three years, we like uneventful and routine.
B has been feeling just okay lately.
He's VERY weak and tired a good deal of the time.
There's nothing one could put their finger on as to why he's so tired and weak, but he's not definitely not getting stronger anymore.
Because his neuropathy and balance issues make it really hard for him to move about easily, he's become more sedentary than he should be and we both think this inactivity is playing it's part in his recent weakness and fatigue.
He told me last week he feels that if he doesn't start regular exercise, something bad is going to happen. Like his body is telling him 'use it or lose it'.
He mentioned it in passing to his good friend John and it turns out John goes to a little 90 minute workout session 3 times a week, and he thought it would suit B quite well. It's just up the street and the guy (professional physical therapist) who's run it (for 15 years now) has experience and knowledge helping fragile folks like B get their strength back. Everyone there is over 60, in fact there's even a 92 year old who attends regularly.
B started going this week and so far, he really likes it. We have high hopes that this will be just the ticket to help B start going forward again on his road to strength and health.
JUNE 5. 2014- Thursday
Lab numbers: Labcorp (6/2)
Hemoglobin- 12.5 (decrease) (normal-12.6-17.7)L
Platelets- 146 (increase) (normal-155-379) L
Neutrophils- 4.1 (decrease) (normal-1.4-7.0)
White Blood Count- 7.3 (decrease) (normal-3.4-10.8)
Creatinine- 1.74 (increase) (normal-0.76-1.27) H
BUN- 24 (decrease) (normal 8-27)
eGFR- 41 (decrease) (normal above 59) L
eGFR- 41 (decrease) (normal above 59) L
Potassium- 4.8 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 91 (decrease) (normal-39-117)
Iron, serum- 81 (increase) (normal- 40-155)
Iron saturation- 31 (decrease) (normal- 15-55)
Ferritin- 2579 (decrease) (normal- 30-400) H
Weight 161.2 (increase)
Alkaline Phosphatase S- 91 (decrease) (normal-39-117)
Iron, serum- 81 (increase) (normal- 40-155)
Iron saturation- 31 (decrease) (normal- 15-55)
Ferritin- 2579 (decrease) (normal- 30-400) H
Weight 161.2 (increase)
A Doc Schriber visit today.
Most of B's labs remain stable, although his kidney numbers are creeping in the wrong direction again.
Doc has decided to try to take B off of one of his anti-rejection meds. Tacrolimus. It's a bit hard on kidneys and since B is tolerating (so far) reducing the other anti-rejection med, Prednisone, last month, Doc wants to see if B can tolerate not taking Tacrolimus (Prograf) at all. B will remain on a small dose of Predisone as his only anti-rejection defense.
So, on the 23nd of June, B will stop taking Tac.
Then we will have to be vigilant for some time thereafter, watching for any signs of Graft vs. Host disease that might crop up as a result of stopping this drug.
I've got a list of stuff to be on the lookout for as we'll need to act sooner than later if something new does arise. He would more than likely have to resume the drug.
Sure hoping he doesn't have any issues when this experiment gets underway.
Speaking of kidneys, B had a kidney stone about 10 days ago that sent him to Tucson Medical Center's ER.
B had been out with the boys, Tom and Bob, at a band rehearsal, so when I got his call that he was feeling yukky and going to the ER, I was half expecting him to say he was just kidding. He knew I was busy putting in our new flooring, and he does sometime tease me, so I thought this might be one of those times. Actually, I was hoping with all my might he was kidding, but no, it was for real.
Tom got on the phone and told me to meet them at the ER.
I was out of the house within minutes, and maybe it was because I wasn't with B right from the start, like I always am, when an emergency arises, but dang, I was really anxious over this hiccup. My usual calm self went MIA for a bit. I tried to keep my anxiousness to myself, so as not to further cause B discomfort, but I was real nervous inside.
So, while kidney stones are a real pain, I was so very relieved that that was all it was.
Those were a scary few hours not knowing what was causing B so much discomfort. His pain level was out of control and he had a fever. I tried not to get too far ahead of myself with worrying about what it could be, but yep, I was very nervous.
I hadn't seen B in this much pain in this whole 3 year journey and he's been through a lot.
Did I mention I was a bit nervous?
So, as I said, a kidney stone was a welcomed diagnosis.
They gave him some good pain meds and within a 4 or 5 hours, the worst of it was over.
He's been fine since. Thank goodness.
Also, I'd like to give kuddos to Tucson Medical Center's ER.
They were great. Quick, competent and thorough service.
Our best ER experience in 3 years and we've had quite a few, at a variety of facilities.
Thanks TMC Emergency Room staff. You guys and gals rocked.
MAY 21. 2014- Wednesday
Lab numbers: Labcorp (5/19 5/21)
Hemoglobin- 14.5 (increase) (normal-12.6-17.7)
Platelets- 133 (decrease) (normal-155-379) L
Neutrophils- 6.9 (increase) (normal-1.4-7.0)
White Blood Count- 10.1 (increase) (normal-3.4-10.8)
Creatinine- 1.45 (increase) (normal-0.76-1.27) H
BUN- 25 (increase) (normal 8-27)
eGFR- 51 (decrease) (normal above 59) L
eGFR- 51 (decrease) (normal above 59) L
Potassium- 4.1 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 117 (increase) (normal-39-117)
Iron, serum- 76 (decrease) (normal- 40-155)
Iron saturation- 32 (unchanged) (normal- 15-55)
Ferritin- 2783 (increase) (normal- 30-400) H
T-149
T shot
Weight 160.2 (decrease)
Alkaline Phosphatase S- 117 (increase) (normal-39-117)
Iron, serum- 76 (decrease) (normal- 40-155)
Iron saturation- 32 (unchanged) (normal- 15-55)
Ferritin- 2783 (increase) (normal- 30-400) H
T-149
T shot
Weight 160.2 (decrease)
A Doc Chen day today, but she was swamped so we saw her NP, Mary, instead.
B didn't really have any new issues this week, so we were okay with seeing Mary.
It was nice to see her and do some catching up.
Mostly she went over B's lab results, which remain stable, and gave him a quick look-see to make sure he didn't have anything obvious going on. He passed the exam.
We did plan on asking Doc Chen to take a look at the MRI report of B's hips, but that can wait until next time.
The reason we'd like her to give us her take, is we've been getting conflicting info about what that report actually said.
When we saw Doc Wild, the TOI hip specialist last month, we left that visit thinking that B had Avascular Necrosis in both hips. But, I had caught a quick glimpse of the MRI report that day, and I thought I had seen the report say that only one hip was involved. I couldn't tell which hip it was, and I wasn't positive of what I thought I'd read as I was reading the report upside down. So I was unsure and wanted clarification.
When I started to ask Doc Wild a question, he asked me to wait until he was done with his examination of B, then he would answer all my questions.
Well, that never happened. He seems to be a good Doc, but before we knew it, he had done his explanation of what he thought was going on with B, told us to wait three months to reevaluate, bid us farewell, and was out the door.
I was caught off guard by his quick style, so my questions went unasked.
He never specifically went over the MRI report with us. He did bring up the films, but we didn't get a good idea of what they showed either.
To say we are really, really spoiled by how well Doc Chen and Doc Schriber communicate with us is an understatement.
So, I thought I'd ask Doc Schriber's team to go over the MRI report and was quite surprised to find it only mentions AVN in B's left hip. It specifically states the right hip does not have AVN.
We are really surprised by this because most of B's hip pain is in his right hip.
So, we are confused.
We've decided to schedule another appointment with Doc Wild, and ask him to go over the MRI and the hip X-rays he took that day. We'd like him to clarify which hip has AVN and ask why the right hip hurts much more than the left. Maybe something else is wrong with the right hip? Maybe arthritis or something that might respond to a non invasive treatment.
Hopefully, we will have a more informative visit that helps us to understand what's going on. Doc Wild seems to know what's going on, but we really don't and that needs to be corrected.
I'm sure it will all work out fine.
One step at a time.
MAY 8. - Thursday
Lab numbers: Labcorp (5/5)
Hemoglobin- 13.4 (decrease) (normal-12.6-17.7)
Platelets- 154 (increase) (normal-155-379) L
Neutrophils- 6.7 (increase) (normal-1.4-7.0)
White Blood Count- 9.1 (increase) (normal-3.4-10.8)
Creatinine- 1.41 (decrease) (normal-0.76-1.27) H
BUN- 19 (decrease) (normal 8-27)
eGFR- 52 (increase) (normal above 59) L
eGFR- 52 (increase) (normal above 59) L
Potassium- 4.0 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 109 (unchanged) (normal-39-117)
Iron, serum- 78 (increase) (normal- 40-155)
Iron saturation- 32 (decrease) (normal- 15-55)
Ferritin- 2629 (decrease) (normal- 30-400) H
Weight 161.7 (decrease)
Alkaline Phosphatase S- 109 (unchanged) (normal-39-117)
Iron, serum- 78 (increase) (normal- 40-155)
Iron saturation- 32 (decrease) (normal- 15-55)
Ferritin- 2629 (decrease) (normal- 30-400) H
Weight 161.7 (decrease)
Today was a Doc Schriber day.
B's labs remain stable. In fact, his kidney numbers improved to the best we've seen since before his transplant. Yay!
His ferritin (iron) number also improved, but still remains quite high. Hopefully, as time goes on, it will continue to drop.
The big news since I last updated is the result of the MRI that B had last week.
Unfortunately, the news is not good.
He does have AVN (Avascular Necrosis) of his hips. Wednesday, we met with a local orthopedic doctor (Dr. John Wild Jr. at Tucson Orthopedic Institute) to go over the MRI and find out what can be done about this new condition for B. It's not a reversible condition, but according to Doc Wild, sometimes it can stabilize, and not get worse.
Hip replacement surgery is really the only treatment for AVN if it does get worse.
So far, B's hip has not collapsed, which is a good thing. If collapse was imminent, surgery would need to be sooner than later. This new Doc wants to take a wait and see approach for the next 3 months.
We're not sure, since B's pain is pretty significant already, how long B can continue on the wait and see path, and Doc Scriber says that in his experience, AVN almost always gets worse in transplant patients, so it is probably a foregone conclusion hip replacement is now in B's future.
At first, when B found out the MRI was positive, he was scared and even saddened that he has yet another obstacle to face. He's faced so much this last decade.
I know he's so darn tired of sickness. And tests, needles, doctors, needles, procedures, needles, surgery, and... did I mention needles?
He's tired of it all. And who can blame him?
Thankfully, his bout with sadness was brief and he's now starting to be more like his old self. That guy who has amazed me, and so many others these last few years, with his positive attitude in the face of sickness, pain and some really scary stuff.
And, because he'd like to be rid of this newest pain, and his cane, he's begun to mentally prepare himself for a hip replacement. So, we'll take it a day at a time, and if things seem to be getting worse, we'll go in sooner than later for the reassessment.
Thankfully, we are hearing that it's not an uncommon surgery with transplant patients and they can do quite well with the surgery. It does have all the normal surgical risks that any non-transpant patient would face, so we are of course nervous if this is what B has ahead of him, but not overwhelmingly so.
So, boys and girls, a new adventure now awaits us. We will remain optimistic that B will have a good outcome with this, just as he's had with all the other obstacles he's faced this last decade.
We remain thankful that he's still here with us, despite the setbacks.
We remain thankful that he can still make music with, and for, so many wonderful friends.
It fills us with happiness, makes our hearts sing, and continues to carry us through the rougher waters.
APRIL 23. - Wednesday
Lab numbers: Labcorp (4/21)
Hemoglobin- 14.0 (increase) (normal-12.6-17.7)
Platelets- 157 (increase) (normal-155-379)
Neutrophils- 5.4 (unchanged) (normal-1.4-7.0)
White Blood Count- 8.8 (increase) (normal-3.4-10.8)
Creatinine- 1.59 (decrease) (normal-0.76-1.27) H
BUN- 23 (increase) (normal 8-27)
eGFR- 45 (increase) (normal above 59) L
eGFR- 45 (increase) (normal above 59) L
Potassium- 3.9 (decrease) (normal 3.5-5.2)
Alkaline Phosphatase S- 109 (increase) (normal-39-117)
Phlebotomy
No T shot
Weight 161.8 (decrease)
Alkaline Phosphatase S- 109 (increase) (normal-39-117)
Phlebotomy
No T shot
Weight 161.8 (decrease)
We saw Doc Chen today.
B also had his MRI today to see if he has developed AVN (Avascular Necrosis) from long term Prednisone use. Fingers and toes crossed he doesn't have this potentially crippling condition. Should get the results within a few days and I'll update here when we do.
The good thing about today's visit with Doc Chen was that B's labs were all pretty good. No new worries.
We are anxious about the MRI, but we'll try to stay calm and in the moment, no matter what the results.
APRIL 10. - Thursday
Lab numbers: Labcorp (4/8)
Hemoglobin- 13.7 (decrease) (normal-12.6-17.7)
Platelets- 165 (increase) (normal-155-379)
Neutrophils- 5.4 (increase) (normal-1.4-7.0)
White Blood Count- 8.7 (increase) (normal-3.4-10.8)
Creatinine- 1.64 (increase) (normal-0.76-1.27) H
BUN- 16 (decrease) (normal 8-27)
eGFR- 44 (decrease) (normal above 59) L
eGFR- 44 (decrease) (normal above 59) L
Potassium- 4.4 (increase) (normal 3.5-5.2)
Alkaline Phosphatase S- 98 (increase) (normal-39-117)
Vit D, 25 Hydroxy- 23.3 (normal-30.-100.) L
Iron, serum- 75 (normal- 40-155)
Iron saturation- 34 (normal- 15-55)
Ferritin- 3234 (Normal- 30-400) H
Weight 162.4 (increase)
Alkaline Phosphatase S- 98 (increase) (normal-39-117)
Vit D, 25 Hydroxy- 23.3 (normal-30.-100.) L
Iron, serum- 75 (normal- 40-155)
Iron saturation- 34 (normal- 15-55)
Ferritin- 3234 (Normal- 30-400) H
Weight 162.4 (increase)
Our regular visit with Doc Scriber today.
Most of B's labs are good, at least for him.
His kidney numbers are probably as good as he'll get, not normal, but not causing him any issues that we can see. We're thankful for that.
In my last post, I talked about the good days and the bad days that B experiences.
He was on a run of 5 good days in a row and had another 5 good ones, before the bad days set in again.
He's not been up to snuff for about a week now. This time, it's mostly pain in his legs and extreme fatigue that have hold of him. Thankfully the queasiness he had for several months has subsided, but the darn pain in his legs is intensifying. He can hardly walk.
We mentioned it to Doc S and he's ordered an MRI to hopefully exclude a condition that can occur in the bones of folks who take a lot of prednisone. It's called AVN, Avascular Necrosis and Doc wants to make sure it's not occurring in B's hips. This condition is very serious. Somehow it starves the bone of blood and the bone begins to die. It can cause collapse of affected bones, in this case, maybe B's hips. We don't want B to have this!
We will definitely be holding our breath that he gets a clean MRI and doesn't have any signs of this AVN junk happening in his bones.
On the subject of waiting for good news from test results, we did get good news from B's cardiologist regarding echoes he had done of his heart valves and carotid arteries a few weeks ago. Nothing serious going on. His valves are stable and there's minimal build up of plaque in the carotid, thank goodness.
Also, when we saw Doc Chen last month, because B's ferritin levels have been so abnormally high (4079 on the 1/13's test! Normal is 30-400), she ordered some extra iron tests. Those test results all came back normal or even on the slightly low side. And his ferritin level has dropped to 3234. Still way, way too high, but finally going down instead of up.
Maybe we'll get good news on the AVN MRI too. Gotta believe.
B's Graft Vs. Host disease is perhaps a tad worse this visit. Enough that the Doc is certainly not going to try to reduce the anti-rejection meds at this time and may even want to increase them back to where they were. We sure hope not, as the prednisone is the evil drug that continues to wreak havoc with B's bones. It would be great if he could gradually come off that drug someday. But apparently, that won't be anytime soon. Darn it.
Despite all the hiccups, B continues to inspire.
He lives and plays through the pain, rarely complaining. Only those of us who know him well, know he's hurting. He's rehearsing with several bands each week for a few upcoming spring gigs and continues to make the most of each day.
He has so many wonderful musician friends who keep the music going in his life, in the bite size chunks that he can handle.
I am so grateful to all of them, for the rehearsals, the rides, the camaraderie, because I know the music and these special friendships help to keep him going. Throughout his illness and recovery, these special folks, in bands of many genres, have provided the musical medicine he's needed.
Thanks guys and girls. You know who you are.
And thanks too, to all our other special (non musician) friends, who also remain by his side, in person and in spirit, listening when he needs an ear, cheering him on, sharing stories, laughter and friendship. You lift him up on those days that might otherwise keep him down.
May I ask a little favor please? When you read this, could you send a positive vibe his way and a little prayer (to whoever you talk to) that his MRI will be a good one, with no issues, and that his pain will once again begin to recede?
Thanks. You rock.
MARCH 26- Wednesday
Lab numbers: Labcorp (3/24)
Hemoglobin- 14.4 (increase) (*new normal-12.6-17.7)
Platelets- 141 (decrease) (*new normal-155-379) L
Neutrophils- 4.9 (decrease) (*new normal-1.4-7.0)
White Blood Count- 8.6 (decrease) (*new normal-3.4-10.8)
Creatinine- 1.52 (decrease) (normal-0.76-1.27) H
BUN- 20 (increase) (normal 8-27)
eGFR-48 (increase) (normal above 59) L
eGFR-48 (increase) (normal above 59) L
Potassium- 4.0 (unchanged) (*new normal 3.5-5.2)
Alkaline Phosphatase S- 89 (decrease) (normal-39-117)
Lipid panel:
Cholesterol Total-263 (normal-100-199) H
Triglycerides- 291 (normal-0-149) H
HDL Cholesterol-55 (normal>39)
VLDL Cholesterol Cal-58 (normal-5-40) H
LDL Cholesterol Calc-150 (normal-0-99) H
Phlebotomy
No T shot
Weight 158 (unchanged)
Alkaline Phosphatase S- 89 (decrease) (normal-39-117)
Lipid panel:
Cholesterol Total-263 (normal-100-199) H
Triglycerides- 291 (normal-0-149) H
HDL Cholesterol-55 (normal>39)
VLDL Cholesterol Cal-58 (normal-5-40) H
LDL Cholesterol Calc-150 (normal-0-99) H
Phlebotomy
No T shot
Weight 158 (unchanged)
A Doc Chen visit today.
B's labs are stable, with many numbers being within normal peramiters.
His heart Doc ordered a lipid panel and B flunked those cholesterol tests pretty significantly, so, he will now be adding a statin drug to his daily med regimen. Retest in a few months to see if it helps get those numbers closer to normal.
Mostly, the news has been good since last visit.
First, B is finally feeling better. Whatever had a hold of him these last few months seems to have finally let go this last week and he's getting stronger day by day.
He's walking more, his appetite has returned, and he just looks so much better. Up 'til last week, he was having more bad days than good.
We were beginning to wonder if only getting a few good days a week was going to be a new post-transplant normal.
On the bad days, he feels queasy, has no appetite, is in a lot of neuropathic pain and he's so fatigued and weak, he'd really rather just stay in bed. He doesn't though, because in our post transplant training we've learned that staying in bed is the worst thing he could do.
To keep moving forward, he's got to keep moving, no matter how yukky he feels. So he gets up and toughs it out on bad days.
The thought, that the new norm was bad days outnumbering the good, was a bit depressing, so we're especially pleased he's finally feeling better. He's had about 5 good days in a row now. (Knock wood)
Don't know what was making him sick, but we're sure happy it's finally let up.
He's still making music, both at home and occasionally out and about. We continue to have music and musicians in the house every week with our Monday Night Music Jam and two of our granddaughter's have even joined in the singing and playing with their Grandpa a few times. They are quite talented and it makes me a bit emotional, in a good way, to hear them all making music together.
Now, for another bit of good news! B has made contact with his donor!!!!
I mentioned in my Feb 6th post that B had signed the paperwork necessary to exchange info through the Be The Match Registry. The one year waiting period had been met, so, if the donor also agreed, he could receive her contact info.
Well, he got the call on March 14th that she had provided her contact information!
He was so excited, sending her a long email introducing himself that afternoon. She responded and in these last few weeks, they've practically become pen pals.
It's been quite emotional getting to know this amazing angel.
Trying to express our thanks to her and relay our amazement at her selfless act of giving, through simple words, seems to fall short somehow.
But, with words being all we have, we hope she's getting a sense of how wonderful she is and how thankful we are to her for her gift of life.
Turns out she's a Facebooker too, so we became 'friends' there.
I mentioned on my Facebook wall that we'd met B's donor, and was touched when many of you expressed thanks to her through comments on that post. Both she and B were moved emotionally by all the kind words of gratitude you left there.
And, her family's giving nature doesn't stop with her. Her husband donated a kidney to save a life a few years ago! Amazing folks to say the least.
Her curly hair and love of decorating may help explain a few of B's newfound post-transplant traits. I'm joking of course, as I don't really think those things are transferred through transplant, but dang, his new hair is curly.
And he's been a lot more vocal with decor opinions around the house than he ever was before, so who knows.
We do know her stem cells definitely saved his life and for that, we will be eternally grateful to her.
So, things are good. We like good. We like good a lot.
Fingers crossed the good continues and B keeps going in the direction of strength and health.
MARCH 6- Thursday
Lab numbers: Labcorp (3/3)
Hemoglobin- 13.2 (decrease) (*new normal-12.6-17.7)
Platelets- 181 (decrease) (*new normal-155-379)
Neutrophils- 7.3 (decrease) (*new normal-1.4-7.0) H
White Blood Count- 11.0 (decrease) (*new normal-3.4-10.8) H
Creatinine- 1.59 (decrease) (normal-0.76-1.27) H
BUN- 19 (decrease) (normal 8-27)
eGFR-45 (increase) (normal above 59) L
eGFR-45 (increase) (normal above 59) L
Potassium- 4.1 (unchanged) (*new normal 3.5-5.2)
Alkaline Phosphatase S- 101 (decrease-now normal!) (normal-39-117)
Weight 158 (no brace) (increase)
Alkaline Phosphatase S- 101 (decrease-now normal!) (normal-39-117)
Weight 158 (no brace) (increase)
Saw Doc Schriber today.
We were very happy to see that the Alkaline Phosphatase has gone down even more and now falls within the normal reference range. Perhaps this new liver med is really doing a good job.
B is still not up to par post virus. In fact, both of us got the same bug and it's knocked us down a few notches. I think we're getting better but we are still not back to normal.
Doc decided to do a few extra tests just to be sure he's on top of what might be going on with B. So, a blood culture, virus swab and a urinalysis were added to today's visit.
Doc thinks B looks pretty good GVH wise, so the reduction in the rejection med (Prednisone) doesn't seem to be triggering anything bad. No new change in meds today. Stay the course and see how he does this next month on the lowered dose.
B's ferratin levels continue to climb, despite monthly phlebotomy. We briefly discussed chelating drugs, but Doc does not want B to take them. Neither do I. I'm learning that ferratin levels can be affected by things other than iron, so these elevated levels might not be all iron related. Boy, the human body is a complicated thing.
All in all, today's visit was pretty darn good.
Also, B saw his neurosurgeon (for his broken back) yesterday.
That too was a very good visit, in fact Doc Dumont says the break is completely healed.
No more brace, and no additional follow-up visits are necessary for December's broken back. Yay!
I had a bit of a scare on the freeway to Scottsdale that I think might be tied to my lingering virus.
We're on the 101 North freeway, going pretty darn fast in quite a bit of traffic, when I start to feel odd, not quite dizzy, but not right at all. Almost out of body like. B's asleep in the passenger seat, so I wake him so he can talk to me and help me keep my head straight as I begin to navigate across the six lanes of traffic to get in the farthest right lane in case I need to pull over. Yes, 6 lanes of heavy traffic, going 75+ miles an hour! I wasn't sure if I was going to continue to get worse or better, so I literally 'willed' myself to keep calm and keep it together and concentrate on getting to the right lane in a safe way. It was quite interesting, and more than a little scary. By the time I had worked my way over to the far right lane, I was starting to feel better, so I kept going towards the exit to Doc Schriber's office, which was just a few miles ahead. I was completely back to normal by the time we left the freeway, but I was a bit freaked out by the incident.
Thankfully, the trip home was fine, no issues at all.
FEBRUARY 24- Monday
Lab numbers: Labcorp (2/24)
Hemoglobin- 15.1 (decrease) (normal-14.0-18.0)
Platelets- 195 (decrease) (normal-140-440)
Neutrophils- 6.5 (decrease) (normal-2.25-7.0)
White Blood Count- 11.2 (decrease) (normal-4.5-10.0) H
Creatinine- 1.79 (increase) (normal-0.7-1.2) H
BUN- 22 (decrease) (normal 8-27)
eGFR-39 (decrease) (normal above 59) L
eGFR-39 (decrease) (normal above 59) L
Potassium- 4.1 (decrease) (3.6-5.0)
Alkaline Phosphatase S- 143 (decrease) (normal-39-117) H
Alkaline Phosphatase S- 143 (decrease) (normal-39-117) H
Just labs today.
The Alkaline Phosphatase number is much better, but still high.
Maybe the new med to help liver function is doing it's thing and we'll see that number get closer to normal soon.
FEBRUARY 19- Wednesday
Lab numbers: Labcorp (2/17)
Hemoglobin- 15.5 (increase) (normal-14.0-18.0)
Platelets- 258 (crazy increase!) (normal-140-440)
Neutrophils- 7.4 (decrease) (normal-2.25-7.0) H
White Blood Count- 11.7 (increase) (normal-4.5-10.0) H
Creatinine- 1.70 (decrease) (normal-0.7-1.2) H
BUN- 26 (decrease) (normal 8-27)
eGFR-42 (increase) (normal above 59) L
eGFR-42 (increase) (normal above 59) L
Potassium- 5.4 (increase) (3.6-5.0) H
Alkaline Phosphatase S- 231 (crazy increase!) (normal-39-117) H
Weight 155.5 (no brace) (decrease)
T shot
Alkaline Phosphatase S- 231 (crazy increase!) (normal-39-117) H
Weight 155.5 (no brace) (decrease)
T shot
Today was a Doc Chen visit.
Two of B's labs went crazy this week. One was a good crazy, the other, not so much.
First for the good. For the first time in years, his platelets broke 200! 258 to be exact! When you consider he used to run single digits and needed platelet transfusions every other day for 16 months to stay alive, this is an amazing milestone!
But, his darn Alkaline Phosphatase also broke 200. And that was a number that Doc Schriber did not want to see. I've mentioned in past posts that his AP has been trending upward, but that if it stayed below 200, Doc wasn't too concerned. Well, darn it. It's gone over 200.
Doc Chen was unable to view B's labs this week in a timely way, and couldn't give us the results at our regular Wednesday visit. She was finally able to give us these results on late Friday (2/21) afternoon.
I called Scottsdale right away to give Doc Schriber a heads up to take a look at the labs after I heard from Doc Chen how high the Alkaline Phosphatase was. So, Doc Schriber has started him on a liver friendly med, Ursodiol, in case it's his liver causing the increase in AP. I'm hoping it's not tied to the reduction in his anti-rejection med. We'll see.
On our Doc Chen visits, they always give B a little checklist to fill out before his visit and this week's definitely reflected how yukky he's been feeling these last 10 days or so.
He checked the yes column for fever, chills, night and day sweats, loss of appetite, nausea, muscle pain, tingling, numbness and marked his overall pain level at 3.
For the last 1o days he's had off and on fevers (none above 100.4), crazy sweats, extreme fatigue, lower left side back pain, nausea, loss of appetite and has felt simply sick. Not sick enough to get him in the hospital, but sick enough to be miserable in his own skin. The Docs think it could be a virus that needs to run it's course.
Doc Chen ordered a urinalysis today because of his lower back pain.
(Update-2/23- B does have a urinary tract infection which could explain some of what's been going on. He started Ciprofloxacin today. Hopefully, he will be feeling good again soon.)
No phlebotomy today. We're on an every 3 week schedule for that now and it didn't line up with today's regular Doc visit.
FEBRUARY 13-Thursday
Day +365!!!
One year ago today, B had his life saving Bone Marrow Transplant!
We are sure he would not be here today if he had not had it.
Thank you kind donor, and thanks to all the folks, Doctors, nurses, everyone, who've had a helping hand in B's courageous journey.
Unfortunately, he was still feeling funky (virus?) today, so our celebration was low key. I ordered Netflix and we started watching 'House of Cards', basically giving 'couch potato' status a good run.
And while our celebration of this milestone was low key, we remain very much aware of his miracle of life and are ever so grateful he's still here.
I adore this man.
FEBRUARY 8- Saturday
Day+ 360
B got a fever 0f 99.9 late yesterday afternoon.
I called 2C to get a plan for the night. He was feeling funky, headache, body aches and chills, but didn't think he needed to be seen. So the plan was to see how he did, and perhaps get him on an antibiotic if his fever climbed above 100.4.
Antibiotics can be hard on his fragile kidneys so it's better to only medicate if necessary. If this is a virus (which antibiotics have no effect on), it will probably just have to run it's course.
I wasn't sure if 2C was the right place to call since B's been doing pretty darn good for so many months. But Jessica, one of his transplant nurses, said it was indeed the right call.
We went into 'keep a watchful eye on him mode' and call them back if his fever climbed or if he started feeling much worse. He didn't get worse last night, the fever remained below 100, so we weathered last night's storm okay.
If he gets worse this weekend, we will call them.
I'm thinking last weekend's memorial service for his brother could have exposed him to a bug. Lots of people and a cold, windy day in the elements may be the underlying cause.
Hope he's feeling better soon.
FEBRUARY 6- Thursday
Lab numbers: Labcorp (2/4)
Hemoglobin- 15.3 (increase) (normal-14.0-18.0)
Platelets- 164.0 (increase) (normal-140-440)
Neutrophils- 8.8 (increase) (normal-2.25-7.0)
White Blood Count- 11.0 (increase) (normal-4.5-10.0)
Creatinine- 1.77 (increase) (normal-0.7-1.2)
BUN- 27 (increase) (normal 8-27)
eGFR-40 (decrease) (normal above 59)
eGFR-40 (decrease) (normal above 59)
Potassium- 4.2 (increase) (3.6-5.0)
Alkaline Phosphatase S- 185 (increase) (normal-39-117)
Weight 161.8 (with 3lb brace) (decrease)
Alkaline Phosphatase S- 185 (increase) (normal-39-117)
Weight 161.8 (with 3lb brace) (decrease)
Today was a Doc Schriber visit.
His labs are somewhat stable, although the culprits we don't want increasing, are increasing. Namely, Creatinine and that darn Alkaline Phosphatase. Wish these guys would start dropping soon. Happily, the blood counts we used to watch like hawks pre-transplant, are doing stellar. His red blood count and his platelets are good.
One week from today it will be the one year anniversary of B's bone marrow transplant.
At one year, if he wants to have contact with his donor, a signed consent form agreeing to that is forwarded on through the Be The Match Foundation. Somewhere, B's angel donor is also making her decision to allow contact or not. He's okay with it (and signed the consent today) and hopes she will too.
Doc Scriber lowered B's prednisone today. Sort of scary, because it's one of two very important anti-rejection, anti-GVHD, meds he takes daily. It's being lowered ever so slightly, but he could still have an issue, so we will watch closely for any changes in the mild GVHD he already has. He will now take a half dose every other day, and a full dose on the other days.
Sure hoping this reduction goes smoothly, as one of prednisone's side effects is reduction of bone density, which is already a big problem for B.
I think, in a perfect world, the Doc would love to get B completely off prednisone, but I don't think that will happen for a very long time, if ever.
B's been feeling a bit punky the last few days, I think it's partly because of the stress of his brother J's memorial service.
B worked very hard to make sure he honored his brother's memory in a way that would make him proud. He delivered an amazing eulogy, and brought together many wonderful musicians to play for friends and family at one of his brother's fishing spots. It turned out to be the coldest, windiest day we've had so far this year, and I think B got a touch of something from exposure to the weather and/or lots of people.
He mentioned to Doc Schriber he wasn't up to snuff, but with his symptoms being vague and not urgent, we will just keep an eye on him for now.
FEBRUARY 5-Wednesday
B had phlebotomy today. Doc Chen had put him on an every 3 week schedule because of how high his ferritin levels are.
JANUARY 27- Monday
Lab numbers: Labcorp
Hemoglobin- 14.2 (increase) (normal-14.0-18.0)
Platelets- 160.0 (increase) (normal-140-440)
Neutrophils- 6.8 (increase) (normal-2.25-7.0)
White Blood Count- 9.7 (unchanged) (normal-4.5-10.0)
Creatinine- 1.59 (decrease) (normal-0.7-1.2)
BUN- 26 (decrease) (normal 8-27)
eGFR-42 (increase) (normal above 59)
eGFR-42 (increase) (normal above 59)
Potassium- 3.8 (decrease) (3.6-5.0)
Alkaline Phosphatase S- 164 (increase) (normal-39-117)
Alkaline Phosphatase S- 164 (increase) (normal-39-117)
No Docs today, just labs.
A slight improvement in renal labs, with creatinine dropping.
Will continue weekly labs.
JANUARY 22-Wednesday
No labs today.
Day+ 343
Today was B's first follow-up visit for his broken back with a neurosurgeon from the U of A's medical center.
We were nervous as we've had no way to know how, or if, B's back has been healing these last 6 weeks. Our only indicator it was healing was that B's back pain has definitely gotten much better, so we were hopeful that healing, despite poor bone density, was occurring.
Thankfully, X-rays revealed it is indeed healing nicely. He will continue to wear the brace another 6 weeks for stability and will be rechecked at that time to check further progress.
We are so relieved.
JANUARY 20- Monday
Lab numbers: Labcorp
Hemoglobin- 14.1 (decrease) (normal-14.0-18.0)
Platelets- 147.0 (decrease) (normal-140-440)
Neutrophils- 6.3 (increase) (normal-2.25-7.0)
White Blood Count- 9.7 (increase) (normal-4.5-10.0)
Creatinine- 1.86 (increase) (normal-0.7-1.2)
BUN- 27 (decrease) (normal 8-27)
eGFR-38 (decrease) (normal above 59)
eGFR-38 (decrease) (normal above 59)
Potassium- 4.0 (increase) (3.6-5.0)
Alkaline Phosphatase S- 162 (increase) (normal-39-117)
Alkaline Phosphatase S- 162 (increase) (normal-39-117)
No Docs today, just labs.
Creatinine is climbing, but still remains below 2.0.
B will continue weekly labs to stay on top of any issue that may arise with his kidneys.
Lab numbers: Labcorp (2/13)
Hemoglobin- 15.1 (increase) (normal-14.0-18.0)
Platelets- 150.0 (increase) (normal-140-440)
Neutrophils- 5.8 (decrease) (normal-2.25-7.0)
White Blood Count- 8.7 (decrease) (normal-4.5-10.0)
Creatinine- 1.79 (decrease) (normal-0.7-1.2)
BUN- 34 (increase) (normal 8-27)
eGFR-39 (increase) (normal above 59)
eGFR-39 (increase) (normal above 59)
Potassium- 3.9 (increase) (3.6-5.0)
Alkaline Phosphatase S- 157 (decrease) (normal-39-117)
Alkaline Phosphatase S- 157 (decrease) (normal-39-117)
T shot
Phlebotomy
Day+ 336
B's kidneys are stable. So far so good. Several weeks ago, Doc Schriber became a bit concerned when B's Creatinine started to near 200. He's had B start doing weekly labs to keep on top of anything that might be changing. Thankfully so far, these labs are showing slight renal improvement.
Today was a Doc Chen visit.
B's ferratin levels continue to climb, despite phlebotomy. She's want him to stop taking his daily pro-renal vitamin because it also contains iron. We're going to have to start making sure that stuff he eats or drinks regularly, aren't loaded with iron. Easier said than done. So many foods are iron fortified, but we'll figure it out.
She also wants B to start taking a 1000 mg calcium supplement daily to help him build bone.
Last month, she had ordered a dexascan for B after his back was so easily fractured in the minor fender-bender he had on 12/11.
Prednisone can be an evil drug, especially if you like to have healthy bones.
It can also be a life saving drug, especially if you are a transplant patient trying to keep your donor's cells and your own cells playing happily ever after together. It's a valuable anti-rejection med and B has to take it daily. But, as I noted, it's effect on B's bones has been dismal.
His dexascan results were alarming, finding that he has full blown osteoporosis, in his hips and legs, especially his femur.
Last visit, Doc Chen mentioned that if the dexascan results were bad, B may need to start taking a bone building drug, Prolia (denosumab), given by injection once every six months. After researching this drug, I had a bunch of questions today about it's safety for B as a renal challenged bone marrow transplant patient.
I am bothered that this drug is relatively new (only been on market for two years) and it's long term use may reveal unknown dangers.
But, it's the known side effects of this drug that got my spidey senses tingling.
Here are a few side effects of Prolia that I found alarming considering B's current conditions:
-Immune system problems. People who have weakened immune systems may have increased risk for developing serious infections.
-Serious infections in lower stomach area (abdomen), bladder, or ear may happen. Inflammation of the inner lining of the heart (endocarditis) due to an infection may also happen more often in people who take Prolia.
(Infections in a transplant patient can trigger GVH. Severe GVH can be fatal for a transplant patient. B takes meds daily to help keep him from getting infections. He doesn't eat many foods he likes because they could cause an infection. He wears a mask in the wind to keep from getting airborne infections. Infections are a very bad thing for transplant patients. Why add to this risk of infections by using this drug?).
-Serious infections of the skin. (B has mild GVH on his skin already! This could make it worse.)
-Hard on kidneys. (Duh!)
-Can cause high cholesterol. (B already has high cholesterol. And cholesterol lowering meds can be hard on the kidneys, so we can currently only use diet to help control it. It's only slightly high, but this drug could make it worse.)
-May cause the femur to spontaneously break. (Ah, isn't this what we're trying to prevent?)
-Oh, and it may cause slow healing of broken bones. (B currently has a broken back.)
-Finally, and this one is the clincher for me not wanting B on this stuff, if you do have negative side effects, you may be stuck with them for a very long time since you can't simply stop taking the drug. It's on-board for at least 6 months.
I brought these concerns up with Doc Chen and she's now in agreement that perhaps we should try something different. Maybe a once monthly drug. Not sure what though, as all the bone building meds out there are hard on the kidneys. She's asked us to discuss this issue with Doc Schriber.
We also plan to add a local renal Doc into the discussion in the near future.
I'm ending this update with some very sad news.
We lost B's brother J on January 9th.
He fought his cancer valiantly, but it was just too aggressive.
We are devastated by this loss, but J was in so much pain, we are relieved he's not hurting anymore.
He was one of a kind, a good man with a huge heart, and B and I will miss him something fierce.
Love you brer bro.
JANUARY 2- Thursday
Lab numbers: Labcorp (12/31)
Hemoglobin- 14.2 (decrease) (normal-14.0-18.0)
Platelets- 133.0 (decrease) (normal-140-440)
Neutrophils- 9.4 (increase) (normal-2.25-7.0)
White Blood Count- 12.4 (increase) (normal-4.5-10.0)
Creatinine- 1.94 (increase) (normal-0.7-1.2)
BUN- 31 (unchanged) (normal 8-20)
eGFR-36 (decrease) (normal above 59)
eGFR-36 (decrease) (normal above 59)
Potassium- 3.8 (decrease) (3.6-5.0)
Alkaline Phosphatase S- 191 (increase) (normal-39-117)
Alkaline Phosphatase S- 191 (increase) (normal-39-117)
Day+ 323
Ruh Roh.
B's kidneys are acting up a bit.
He started retaining water, gaining over 10lbs last week. I started giving him Lasix, to help get rid of it, and while he did lose a bit, he's still not right.
His kidney/renal labs confirm something's up.
We saw Doc Scriber today and he's a bit concerned. He doesn't want to see the Creatinine level go over 2.0.
Because Doc Scriber will be out of the country for 3 weeks, he's requested we bring Doc Chen up to date and do weekly labs for the time being to keep a closer watch on the renal numbers.
There could be a number of reasons for B's kidneys acting up.
First, B's anti-rejection med, Tacrolimus, is hard on kidneys. He takes this med every third day. I think Doc Scriber will try to lower his dose next month to be gentler on the kidneys.
He also takes 8-9 additional pills every day, a few of which may put stress on the kidneys.
Also, B was on an antibiotic (Keflex) for 3 weeks (for an infected ingrown toenail) and that drug can be ever so slightly tough on kidneys.
Finally, the Lasix I give him to reduce fluids, is a bit hard on kidneys. Doc wants me to use Hydroclorothiazide instead. It's easier on them.
We don't know if any of these meds are contributing to his latest kidney issue, but hopefully this decreased kidney function is a temporary setback and the next set of labs show improvement.
We are excited to be entering a new year.
Last year was a good one for us, with B getting his transplant miracle.
We hope 2014 is just as good, and that B continues to heal and get stronger.
Happy New Year and may this next journey around our bright star be filled with health and happiness for each and every one of you!
DECEMBER 18- Wednesday
Lab numbers: Labcorp
Hemoglobin- 14.5 (increase) (normal-14.0-18.0)
Platelets- 145.0 (increase) (normal-140-440)
Neutrophils- 5.8 (decrease) (normal-2.25-7.0)
White Blood Count- 8.5 (decrease) (normal-4.5-10.0)
Creatinine- 1.62 (decrease) (normal-0.7-1.2)
BUN- 31 (increase) (normal 8-20)
eGFR-45 (increase) (normal above 59)
eGFR-45 (increase) (normal above 59)
Potassium- 4.2 (decrease) (3.6-5.0)
Alkaline Phosphatase S- 150 (increase) (normal-39-117)
Ferritin-3979 (increase) (normal 30-400)
Alkaline Phosphatase S- 150 (increase) (normal-39-117)
Ferritin-3979 (increase) (normal 30-400)
Day+308
Relatively routine visit with Doc Chen today.
Discussed B's weakened bones (which contributed to his broken back last week) and what can be done to strengthen them since he will probably have to remain on the bone weakening Prednisone (anti-rejection med) for perhaps the rest of his life.
Doc wants to do a dexascan to determine the amount of bone loss and also wants to start a bone strengthening drug (Prolia-a twice yearly injection) to see if it will help.
I told her I wanted to run the Prolia idea by Doc Schriber to see if he's okay with it. She's cool with that.
B's ferritin levels climbed to 3979 (from 3159) instead of dropping, which surprised us because of his monthly phlobotomy sessions (which are done to start bringing his iron overload down). Doc Chen said the increase could be linked to B's back injury last week. Sometimes ferritin levels will rise with trauma. She thinks that as he heals, we will see the decrease we expected. Hope so.
We are finding the challenges of B having a broken back will have us changing our Christmas plans quite a bit. Shopping time is going to be difficult to find, so we've scaled back our Christmas to-do lists to the bare necessities.
I had gotten the outside lights up before he broke it, so our house looks festive from the street, but I've done very little inside.
This being our first post transplant Christmas, I was planning on returning to my, pre B getting sick, somewhat over the top ( I am a retired florist!) style of Christmas decorating.
I'll now adjust my plans and embrace a more simple style, but I am determined to make the inside of the house look somewhat festive as well. Strangely, B likes the house dressed up for Christmas. A lot. So, I'll do it for him.
This Christmas will be a celebration of the miracle we were given this year.
Last year at this time, we knew his transplant was weeks away and we didn't know if he'd be with us for another Christmas.
He's here! He's healing! To all who know and love him, he's by far the best gift we have this year.
May your families all have a Merry Christmas and a healthy, happy Holiday.
DECEMBER 12-2013-Thursday
Day +302
B had a setback yesterday.
While out to lunch with a friend, his car was involved in a minor fender bender.
The airbags did not deploy, and there was no visible damage to either car, but B's body didn't fare as well. It's probably because of bone weakening Prednisone, which B takes daily as part of his post-transplant anti-rejection regimen, that his back was broken in the collision.
It's a compression fracture of his L4 vertebrae.
We've traveled this broken back road before on Sept. 11th, 2011 when, weakened by chemo, B passed out and sustained a compression fracture of his L1 vertebrae. Weird that yesterday's fracture also occurred on the 11th day of the month.
We spent the day and most of the night at UMC's ER, where a CT scan and MRI confirmed the fracture.
We are settling in to the new routines that come with a broken back.
B's relatively comfortable (except when he moves the wrong way), and we intend to weather this storm with our spirits unbroken.
I'm going to call him Sir B this time, because the back brace he has to wear the next 6-8 weeks is quite significant, resembling a knight's armor. We called him Batman two years ago when he had to wear this same brace.
On a funny note, guess who, after her shower yesterday afternoon, sprayed hair spray, instead of deodorant, under her arms?
Yep, it was me.
But I have a good excuse. It was right after my shower that I discovered the injured B, lying on the bed, in quite a bit of pain. He'd come straight home after the accident, found I was showering, and laid down to wait for me to finish. Surprised and caught off guard by the emergency, my mind was on getting him to the ER and not which container of spray I was picking up.
It really was a bit of comic relief in a tense situation.
Ahhh life.
DECEMBER 3- Tuesday
Lab numbers: Labcorp
Hemoglobin- 14.2 (decrease) (normal-14.0-18.0)
Platelets- 140.0 (decrease) (normal-140-440)
Neutrophils- 7.0 (increase) (normal-2.25-7.0)
White Blood Count- 9.8 (decrease) (normal-4.5-10.0)
Creatinine- 1.67 (increase) (normal-0.7-1.2)
BUN- 27 (decrease) (normal 8-20)
eGFR-43 (decrease) (normal above 59)
eGFR-43 (decrease) (normal above 59)
Potassium- 4.3 (increase) (3.6-5.0)
Alkaline Phosphatase S- 149 (decrease) (normal-39-117)
Alkaline Phosphatase S- 149 (decrease) (normal-39-117)
Weight- 158.7 (increase)
Day +294. (Can you believe it's been almost 3oo days since transplant!?)
Day +294. (Can you believe it's been almost 3oo days since transplant!?)
We saw Doc Schriber today.
It's kind of nice to say it was another uneventful, routine visit. Really, for quite some time now, B's been doing pretty darn good.
Lab numbers go up, lab numbers go down, but none of the iffy labs are causing B to feel unwell, so we're happy campers.
B got permission to add apples and oranges to his 'okay to eat' list, but was very disappointed that shellfish, namely lobster and shrimp, are still forbidden.
It was funny watching B try to talk the Doc into letting him eat shellfish, but when the Doc said "Those guys are dirty critters", he relented.
With the 'okay' to bring home oranges, I did just that. It was a trip watching B eat (and enjoy!) his first orange in a very long time.
We take so many everyday things for granted, like simply being able to
eat an orange.
Watching B thoroughly enjoy that orange reminds me to savor life, and it's simple pleasures, every single second of the day!
NOVEMBER 20- Wednesday
Lab numbers: Labcorp
Hemoglobin- 15 (increase) (normal-14.0-18.0)
Platelets- 145.0 (increase) (normal-140-440)
Neutrophils- 6.2 (decrease) (normal-2.25-7.0)
White Blood Count- 10.0 (decrease) (normal-4.5-10.0)
Creatinine- 1.50 (decrease) (normal-0.7-1.2)
BUN- 36 (increase) (normal 8-20)
eGFR-49 (increase) (normal above 59)
eGFR-49 (increase) (normal above 59)
Potassium- 4.1 (decrease) (3.6-5.0)
Alkaline Phosphatase S- 176 (normal-39-117)
Alkaline Phosphatase S- 176 (normal-39-117)
Weight- 152.6 (decrease)
T shot
T shot
A Doc Chen visit today.
He remains stable, with most of his labs improving.
Then there's this pesky lab called Alkaline Phosphatase S.
That lab's been trending upward for a few months now, and an abnormally high count might indicate a liver issue.
After noticing B's Alkaline Phosphatase going up these last few months, I asked Doc Schriber what this could mean. He said that a count in the 200's might be concerning, but B's counts haven't gotten above the 120's, so he wasn't concerned.
So, when I saw that his Alkaline Phosphatase had jumped quite a bit this week to 176, I got a bit concerned.
Concerned enough that I actually put in a call to Scottsdale so I could talk to Doc S or Rochelle to find out if they were okay with this jump and to help me better understand if my concern was warranted, and if I should be looking for changes in B's health that might correlate with this high lab result.
And since the itchiness on B's feet and ankles also had returned with a vengeance last week, I wondered if it could be tied to this high lab result.
Rochelle was her usual great self and put me at ease about the lab result. She asked a few liver related questions to see if B was feeling sick, but he's not. No tummy tenderness, no yellow eyes, etc, and she doesn't think the itchiness is related.
While we don't like AP trending upward, for now, he's asymptomatic liver wise, so I'll just keep a watchful eye, and try not freak out too much.
Actually, after these last few years and all the stuff that's gone down, I'm pretty good at staying level headed and not freaking out.
Anyhoo, I'm adding Alkaline Phosphatase to the list of labs we watch at the beginning of these posts (retroactively adding them back to July when he was hovering in the high normal range) so I can keep an eye on the trend.
B also had another (his third so far) phlebotomy session today.
Doc Chen wants to check his ferritin levels next month to see if his iron overload issue is starting to resolve. Last time we checked, his ferritin level was a staggering 3159 (normal is between 30-400).
Levels that high will eventually cause damage to vital organs so we're hoping the monthly phlebotomy sessions are bringing his iron overload down.
I can see his color is normalizing, he's less bronze, so maybe the bloodletting is working.
Fingers crossed next month's labs confirm this.
Thanksgiving is in a week and B and I have so very much to be thankful for.
Two years ago, the day after Thanksgiving 2011, we almost lost B.
I took a critically ill B to the ER at Northwest Hospital, where we met Doc Chen for the first time. She and the staff of Northwest Hospital, worked for days to save his life.
After he became stable, we made the decision to let Doc Chen become his oncologist. We sadly decided to let his team at the University of Arizona Cancer Center go. It turns out that the UofA team did get his Non-Hodgkins Lymphoma in remission, but the chemo he endured through that summer had made him a very sick puppy.
I think it was when Doc Chen told B he needed her meticulous care, that we made the decision to switch.
We didn't know it then, but B was already morphing into Myelodysplastic Syndrome, and I feel deep in my soul, bringing Doc Chen and her team on board was a critical decision in his journey.
She managed his care just like she said she would, meticulously, for all those long 16 months of transfusions. She never gave up and she would tell B, "I'm not giving up on you B, don't you give up". B adores her.
She was the one who connected us with Doc Schriber and his Bone Marrow Transplant team.
The rest is history.
Here we are now, two years later, living (an almost normal) life again, enjoying the simple pleasures, with hopes and dreams, that he'll have many more Thanksgivings to celebrate.
He's at day +280 post transplant and really doing quite well.
We have so much to be thankful for and we don't take a moment for granted.
Thanks to all of you who have held us up, and continue to hold us up, along the way.
From the bottom of our hearts. Thank you.
NOVEMBER 4- Tuesday
Lab numbers: Labcorp
Hemoglobin- 13.6 (decrease) (normal-14.0-18.0)
Platelets- 116.0 (decrease) (normal-140-440)
Neutrophils- 7.4 (increase) (normal-2.25-7.0)
White Blood Count- 10.5 (increase) (normal-4.5-10.0)
Creatinine- 1.58 (decrease) (normal-0.7-1.2)
BUN- 28 (decrease) (normal 8-20)
eGFR-46 (increase) (normal above 59)
eGFR-46 (increase) (normal above 59)
Potassium- 4.3 (increase) (3.6-5.0)
Alkaline Phosphatase S- 124 (normal-39-117)
Alkaline Phosphatase S- 124 (normal-39-117)
Weight- 159.2 (increase)
Flu shot
Flu shot
So, looks like B gained about 7 lbs these last two weeks. I'm not sure if this corresponds to all the Halloween chocolate we brought into the house, or water retention. We don't want any crazy water weight gains like when he was first transplanted (60 lbs in 2 weeks). His renal labs remain stable, so I'm thinking it's the chocolate. But, while they remain stable, his kidneys are still not normal, so we'll keep an eye on his weight these next few weeks.
His other labs were also pretty good. Platelets down a bit, but that seems to be his post transplant trend. He seems be to staying somewhere between the one teens and the one fortys, so 116 isn't alarming the Doc.
B's itchy feet and ankles were better, so we didn't make a big deal out of them like we thought we'd have to this visit. Maybe mosquito bites were the cause.
His Graft vs Host has flared a bit since last visit, on his arms and in his mouth. We actually saw it on his arms when his Tacrolimus dose was reduced every so slightly last month (to 8 pills a month vs 10 pills a month).
When we saw it flaring, we went back to the regular dose, and today Doc told us it was okay we did that. In fact, he said, because of the obvious flare up of the GVH, he doesn't want to make any changes to his anti-rejection meds for the rest of the year.
Darn it. B was disappointed. Still no salads, fresh fruit or soft serve ice cream for the foreseeable future.
But he has a foreseeable future, and that's much better than where he was this time last year, running out of track on the transfusion train to nowhere.
We are grateful for each and every day.
NOVEMBER 1, 2013- Friday-
No labs.
Day +261.
This last week, B's had some really bothersome itchiness on his feet and ankles. I think he may have a few skeeter bites, maybe mixed in with Graft vs Host, so it's hard to say what's causing what. Some of the areas bothering him definitely look bug bit, but they are also strangely symmetrical on both feet, (and he says he had his shoes on when they started bugging him), so maybe GVH can look like a bug bite. Not sure.
We'll mention it at our next visit with Doc Schriber.
OCTOBER 23-2013 Wednesday
Lab numbers: Labcorp
Hemoglobin- 14.7 (increase) (normal-14.0-18.0)
Platelets- 137.0 (decrease) (normal-140-440)
Neutrophils- 6.7 (decrease) (normal-2.25-7.0)
White Blood Count- 9.5 (decrease) (normal-4.5-10.0)
Creatinine- 1.65 (increase) (normal-0.7-1.2)
BUN- 33 (increase) (normal 8-20)
eGFR-44 (decrease) (normal above 59)
eGFR-44 (decrease) (normal above 59)
Potassium- 4.3 (increase) (3.6-5.0)
Alkaline Phosphatase S- 130 (normal-39-117)
Alkaline Phosphatase S- 130 (normal-39-117)
Weight- 152.4 (increase)
T shot
T shot
B had his monthly visit with Doc Chen today.
It was all in all a pretty good visit.
Mostly, B's labs and GVH remain stable.
He still has kidney issues and some Graft vs Host on his skin and in his tear ducts, but none of these things are causing too much discomfort for him. He's not having swelling issues, and aside from some itchiness, his GVH seems under control.
At our 9/25 visit with Doc Chen last month, B mentioned he'd been having some pretty significant day sweats. She called us at home later to say she thought it might be a good idea if he had a PET scan again to rule out a lung infection.
Of course, I reacted as I usually do to PET scan requests, and, after hanging up, freaked out a bit. I started fixating on 'what ifs', knowing that if the PET scan shows cancer, we really don't have a lot of (or any?) options for treating it at this point. I just don't want to know about stuff we can't treat, especially since B's in a good place mentally right now as he recovers from the transplant. Ugh.
Well, he had the PET scan last week, and happily, my fears were unfounded.
The PET scan results were great, with no sign of cancer!!
So, now, I'm glad he had it.
I can be such a nut sometimes. Thankfully, I kept most of my nuttiness about my PET scan hesitancy to myself this time, so no one was unduly worried by my angst.
B also had his second round of phlebotomy today (to reduce his iron overload issues) and this time, there was no extra, at home, bleeding excitement afterwards. He only lost a routine 1 liter of blood this time.
Only?
OCTOBER 3-4-Thursday/Friday
Day +232/233.
Our visit to Scottsdale this month included not only our regular doctor visit on Thursday, but a Celebration of Life on Friday.
Once again on Thursday, we got good news.
Labs continue to be stable, with even the renal numbers falling a bit (and that's a good thing).
And for the first time in years, his platelet count actually reached a normal number. Sort of.
Quite recently, reference levels for some blood components, were changed, and the normal levels for platelets are now between 155-379, but just for grins and to be able to say his platelets are normal, I'm using the reference range we've aimed for the last few years (140-440).
I'll start using the updated ranges next time. Silly, I know, but sometimes silly just plain feels good.
Friday was the Virginia G. Piper Scottsdale Shea Transplant Center's Celebration of Life.
Survivors of bone marrow transplant's done by Doc Schriber and his team these last 15 years were honored at a special luncheon.
It was a wonderful event.
We visited with Doc Briggs, and reconnected with Rochelle, our angel NP, and quite a few of the nurses who's meticulous care helped B survive those first few months. We also visited with most of the administrative staff who helped with all the back stage stuff before, during, and after transplant.
These folks have all become friends. Friends for life. The feeling of love and caring coming from everyone we saw again was palpable.
It was interesting to hear how Doc Schriber and his transplant team found a way to persevere through logistical adversities and find a way to continue saving lives when they had to change hospitals after 13 years. They did it and we are so grateful they did!
It was great to have a chance to meet other survivors and hear their courageous stories.
B was the baby of the bunch, with just '8 months' on his name badge, but we saw folks who had '15 years' on their name badges. A testament to survival and the successes of this amazing transplant team.
It's Monday evening as I write this update. I'm in our living room, laptop aglow, surrounded by the wonderful sounds of live music as B and a few musician friends rehearse songs for a new group they are putting together.
They just did a smashing rendition Emerson, Lake and Palmer's 'From the Beginning', with a lively Santana meets AC/DC ending. Fun!
As I watch B, in his element, happily making music, I'm giving thanks for new beginnings and all the blessings of life.
Life, beautiful life.
Thanks friends, each and every one of you, for making all of this possible.
SEPTEMBER 25-Wednesday
Day +224.
B had his regular visit with Doc Chen today.
His labs all remain stable and it was another good visit. Yes!
At our last visit with Doc Chen a month ago, it was mentioned that it may be time to start trying to get B's transfusion iron overload issue under control.
Because he had so many blood transfusions over the last two years, his iron levels are off the charts. A regular Ferritin count is supposed to be between 30-400 and B's is 3,159!
That's crazy high and dangerous if left untreated. And maybe, this iron overload is contributing to his neuropathy, so if he can lower it, he might get some relief there. Iron overload is treated either with chelating drugs or phlebotomy. He's still not a good candidate for the chelating drugs as they can have some pretty scary side effects, but, now that he's got a normal hemoglobin count, Doc Chen thought it would be okay if he started phlebotomy.
That's basically where they take blood out of B. On a regular basis. Bloodletting.
We'd told Doc Chen we'd run this idea by Doc Schriber at our next visit with him. We saw him two weeks ago and mentioned it. He was cool with the idea, so today B had his first phlebotomy session.
The nurses in the infusion pod were downright amused when he handed them the bloodletting orders. After seeing B get almost a hundred blood transfusions where blood was put IN him, they were practically giddy that he was now well enough to have blood taken OUT.
I was surprised at just how much blood they take out in one of these bloodletting sessions. It was a lot. I'll make a note of how much next time. They want to do this once a month until they get his iron levels closer to normal.
The phlebotomy went well, although, we did have a bit of a hiccup at home about three hours later. (Note-if the sight of blood makes you queasy, look away while you finish reading this.)
B had layed down for a nap after we got home from the Doc's.
He started waking up few hours later and while he was still laying down, semi dozing, he took off the bandage they had wrapped around his arm. They had told him to keep it on for about 20 minutes so he didn't give it a second thought when he removed it 3 hours later.
Unknown to him, the puncture site still wasn't stable. As he lay there waking up a few more minutes, he didn't know the puncture site had started to bleed. And I mean BLEED. It wasn't until he stood up that he suddenly realized he was bleeding. At a pretty fast clip. Blood was everywhere, running off his finger tips, all over the bed, the floor, his clothes, socks, everywhere.
I was in another room when I heard his panicked call for help and after a moment of shock at seeing all the blood, I got pressure on the bleeder and got it re-bandaged.
It hasn't bled through the bandage at all as I write this (5 hours later) so I think we're good for now, but dang, there's no way that bandage is coming off until tomorrow! He has a decent platelet count (118) so I'm not sure why this happened. I know they go into a large vein with a large needle for the phlebotomy but this was definitely unexpected.
He didn't feel unwell afterwards (other than some Doc Martinish sight-of-blood residual queasiness) so I don't think he'll have any issues since it's not bleeding anymore. I'll keep a close eye on him these next 24 hours to make sure he's not dizzy or anything and make sure he stays hydrated as he makes new blood.
Chalk up yet another new adventure in this amazing journey.
Yikes!
SEPTEMBER 22-Sunday
Lab numbers: Labcorp
Hemoglobin- 14.2 (unchanged) (normal-14.0-18.0)
Platelets- 149.0 (increase) (normal-140-440) Normal!!!
Neutrophils- 8.0 (increase) (normal-2.25-7.0)
White Blood Count- 11.4 (increase) (normal-4.5-10.0)
Creatinine- 1.60 (decrease) (normal-0.7-1.2)
BUN- 25 (decrease) (normal 8-20)
eGFR-45 (increase) (normal above 59)
eGFR-45 (increase) (normal above 59)
Potassium- 3.9 (unchanged) (3.6-5.0)
Alkaline Phosphatase S- 123 (normal-39-117)
Alkaline Phosphatase S- 123 (normal-39-117)
Weight- 151.9 (decrease)
Our visit to Scottsdale this month included not only our regular doctor visit on Thursday, but a Celebration of Life on Friday.
Once again on Thursday, we got good news.
Labs continue to be stable, with even the renal numbers falling a bit (and that's a good thing).
And for the first time in years, his platelet count actually reached a normal number. Sort of.
Quite recently, reference levels for some blood components, were changed, and the normal levels for platelets are now between 155-379, but just for grins and to be able to say his platelets are normal, I'm using the reference range we've aimed for the last few years (140-440).
I'll start using the updated ranges next time. Silly, I know, but sometimes silly just plain feels good.
Friday was the Virginia G. Piper Scottsdale Shea Transplant Center's Celebration of Life.
Survivors of bone marrow transplant's done by Doc Schriber and his team these last 15 years were honored at a special luncheon.
It was a wonderful event.
We visited with Doc Briggs, and reconnected with Rochelle, our angel NP, and quite a few of the nurses who's meticulous care helped B survive those first few months. We also visited with most of the administrative staff who helped with all the back stage stuff before, during, and after transplant.
These folks have all become friends. Friends for life. The feeling of love and caring coming from everyone we saw again was palpable.
It was interesting to hear how Doc Schriber and his transplant team found a way to persevere through logistical adversities and find a way to continue saving lives when they had to change hospitals after 13 years. They did it and we are so grateful they did!
It was great to have a chance to meet other survivors and hear their courageous stories.
B was the baby of the bunch, with just '8 months' on his name badge, but we saw folks who had '15 years' on their name badges. A testament to survival and the successes of this amazing transplant team.
It's Monday evening as I write this update. I'm in our living room, laptop aglow, surrounded by the wonderful sounds of live music as B and a few musician friends rehearse songs for a new group they are putting together.
They just did a smashing rendition Emerson, Lake and Palmer's 'From the Beginning', with a lively Santana meets AC/DC ending. Fun!
As I watch B, in his element, happily making music, I'm giving thanks for new beginnings and all the blessings of life.
Life, beautiful life.
Thanks friends, each and every one of you, for making all of this possible.
SEPTEMBER 25-Wednesday
Today's numbers: Labcorp (Az Onc)
Hemoglobin- 14.2 (1ncrease) (normal-14.0-18.0)
Platelets- 118.0 (decrease) (normal-140-440)
Neutrophils- 5.7 (decrease) (normal-2.25-7.0)
White Blood Count- 8.8 (decrease) (normal-4.5-10.0)
Creatinine- 1.76 (decrease) (normal-0.7-1.2)
BUN- 30 (unchanged) (normal 8-20)
eGFR-40 (unchanged) (normal above 59)
eGFR-40 (unchanged) (normal above 59)
Potassium- 3.9 (unchanged) (3.6-5.0)
Alkaline Phosphatase S- 122 (normal-39-117)
Alkaline Phosphatase S- 122 (normal-39-117)
Weight- 152.4 (decrease)
T shot
T shot
B had his regular visit with Doc Chen today.
His labs all remain stable and it was another good visit. Yes!
At our last visit with Doc Chen a month ago, it was mentioned that it may be time to start trying to get B's transfusion iron overload issue under control.
Because he had so many blood transfusions over the last two years, his iron levels are off the charts. A regular Ferritin count is supposed to be between 30-400 and B's is 3,159!
That's crazy high and dangerous if left untreated. And maybe, this iron overload is contributing to his neuropathy, so if he can lower it, he might get some relief there. Iron overload is treated either with chelating drugs or phlebotomy. He's still not a good candidate for the chelating drugs as they can have some pretty scary side effects, but, now that he's got a normal hemoglobin count, Doc Chen thought it would be okay if he started phlebotomy.
That's basically where they take blood out of B. On a regular basis. Bloodletting.
We'd told Doc Chen we'd run this idea by Doc Schriber at our next visit with him. We saw him two weeks ago and mentioned it. He was cool with the idea, so today B had his first phlebotomy session.
The nurses in the infusion pod were downright amused when he handed them the bloodletting orders. After seeing B get almost a hundred blood transfusions where blood was put IN him, they were practically giddy that he was now well enough to have blood taken OUT.
I was surprised at just how much blood they take out in one of these bloodletting sessions. It was a lot. I'll make a note of how much next time. They want to do this once a month until they get his iron levels closer to normal.
The phlebotomy went well, although, we did have a bit of a hiccup at home about three hours later. (Note-if the sight of blood makes you queasy, look away while you finish reading this.)
B had layed down for a nap after we got home from the Doc's.
He started waking up few hours later and while he was still laying down, semi dozing, he took off the bandage they had wrapped around his arm. They had told him to keep it on for about 20 minutes so he didn't give it a second thought when he removed it 3 hours later.
Unknown to him, the puncture site still wasn't stable. As he lay there waking up a few more minutes, he didn't know the puncture site had started to bleed. And I mean BLEED. It wasn't until he stood up that he suddenly realized he was bleeding. At a pretty fast clip. Blood was everywhere, running off his finger tips, all over the bed, the floor, his clothes, socks, everywhere.
I was in another room when I heard his panicked call for help and after a moment of shock at seeing all the blood, I got pressure on the bleeder and got it re-bandaged.
It hasn't bled through the bandage at all as I write this (5 hours later) so I think we're good for now, but dang, there's no way that bandage is coming off until tomorrow! He has a decent platelet count (118) so I'm not sure why this happened. I know they go into a large vein with a large needle for the phlebotomy but this was definitely unexpected.
He didn't feel unwell afterwards (other than some Doc Martinish sight-of-blood residual queasiness) so I don't think he'll have any issues since it's not bleeding anymore. I'll keep a close eye on him these next 24 hours to make sure he's not dizzy or anything and make sure he stays hydrated as he makes new blood.
Chalk up yet another new adventure in this amazing journey.
Yikes!
SEPTEMBER 22-Sunday
Day+221
Quick update-
Biopsy results for all the skin growths that Doc Hud removed from B's face were NOT positive for squamous cell cancer. Not positive! Two were positive for basal cell and the rest were just AK's, so the fear he was in the midst of a Tacrolimus induced squamous cell storm has been abated somewhat. Yay!
I had emailed Doc Schriber (before we got these results) about Tacrolimus vs Sirolimus and he responded that he wants to stay with Tac, continuing to reduce the dose over time.
These biopsy results made me very comfy with that decision.
B will still have blue light treatment on his cheeks, but I think we've got his skin issues under control for now. (Update- Blue light was cancelled, Doc doesn't think it's a good idea with B's GVH issues on his face.)
His tummy remains a bit iffy, but hasn't presented in anything definitive, so we'll keep a watchful eye and keep on keeping on.
B's got his fingers in many musical pies right now and he's a happy camper.
Gypsy music, folk music, Tilley music, rock and roll and everything in between.
He looks really good, seems to be getting stronger, and is even driving again.
It's a new normal, but it's a such a good normal compared to where he was these last few years.
We are so grateful to all of you who have had a part in keeping him afloat through some really rough waters these last few years.
Your gifts of time spent with him, time making music for him and with him, all the positive thoughts and prayers sent his way and the healing hands of the many who have touched him, have made the difference.
Love. Love. Love.
SEPTEMBER
13-Friday
Day
+212.Today was B's visit with Doc Hud and sure enough, he had a bunch of suspicious junk all over his face.
The cream that Doc gave him a few weeks ago did a nice job of clearing up the seborrhoeic dermatitist stuff so Doc was able to get a better picture of what else was going on this time.
He identified a half dozen more small growths he thinks are squamous cell cancers, and one he thinks is a basal cell. He biopsied those 7 areas, as well as noting that there are several large patches (on B's cheeks) he thinks are suspicious as well.
He didn't biopsy the large areas, but wants to treat them with a special blue light to try to get rid of them.
The Doc also mentioned a different anti rejection med (Sirolimus) that might be considered instead of Tacrolimus since Tac is notorious for causing squamous cell issues.
Doc Hud asked me to mention Sirolimus to Doc Schriber, letting him know that he's read dermatological literature that notes it's not as apt to cause squamous cell issues as Tacromilus.
I may fire off an email to Scottsdale so they can research it before we go up next time.
I, of course, Googled Sirolimus and found it's seems more renal friendly than Tacrolimus too. While it would be nice if there was an alternative that would cause less squamous cell issues and be gentler on the kidneys, I have no idea if this drug is even used for Bone Marrow patients. And some of the Google sites said Sirolimus might not be especially good if you tend to get blocked arteries, which is an issue for B.
Doc Hud said the same thing, he doesn't know enough about B's case to know if it would even be appropriate for him, but with the way B is erupting with squamous cells, it's worth a mention.
So, at Doc Hud's request, I'll mention it. We know Doc Schriber, with his experience and wisdom with Bone Marrow transplants, will be able to give us a good answer.
B's tummy has been a little iffy lately for a few days now, but ginger ale seems to settle it okay. Not sure if this could turn into a larger issue, but for now, I'll keep track of his temp and hound him with 'are you alright?' queries just in case. He's not a complainer and I don't like to be caught off guard if something is amiss. For those of you who don't know my sense of humor, I don't really hound him, but when he's on the iffy side, I do ratchet up my watchful eyes on him.
Never a dull moment.
SEPTEMBER 10-Tuesday
Today's numbers: Labcorp
Hemoglobin- 14.1 (1ncrease) (normal-14.0-18.0)
Platelets- 129.0 (increase) (normal-140-440)
Neutrophils- 7.6 (increase) (normal-2.25-7.0)
White Blood Count- 10.6 (decrease) (normal-4.5-10.0)
Creatinine- 1.77 (increase) (normal-0.7-1.2)
BUN- 30 (decrease) (normal 8-20)
eGFR-40 (decrease) (normal above 59)
eGFR-40 (decrease) (normal above 59)
Potassium- 3.9 (unchanged) (3.6-5.0)
Alkaline Phosphatase S- 120 (normal-39-117)
Alkaline Phosphatase S- 120 (normal-39-117)
Weight- 153.2 (increase)
Today was B's once monthly visit with Doc Schriber.
His counts remain somewhat stable.
Platelets climbed a bit more, which was nice, but the darn Creatinine also climbed, which isn't so good. For the last month, his renal labs have gone in the wrong direction.
I was hoping that by reducing his (hard on kidneys) anti-rejection med Tacrolimus a month ago, he would start to have improving renal numbers, but the opposite's occurred.
Thank goodness he's not having any swelling or other renal failure issues like he had early on though. Hoping these numbers turn around soon.
In the meantime, we're really happy his liver and blood counts remain pretty darn good and his GVH hasn't gotten worse.
Although the Seborrhoeic dermatitist cleared up pretty good with the cream Doc Hud gave him a few weeks ago, his face still has quite a bit of activity going on. I'm concerned that he still has areas that look questionable, especially since he's at high risk for squamous cell cancer (Tacrolimus being the culprit again) so I've made him another appt. with Doc Hud for later in the week.
Doc Schriber agrees that his skin still looks iffy and thinks it's probably a combination of GVH and squamous cell junk so I'm glad we've got the Doc Hud appt. already lined up. We were there just a few weeks ago, but visiting Doc Hud may turn out to be a monthly thing too. That's okay. Whatever it takes to keep B going in the right direction.
Speaking of squamous cell, it turns out that B's brother J's squamous cell cancer is inoperable because it's wrapped around his carotid artery. The Docs were afraid this might be the case and it is. This means the Docs will only have chemo and radiation in their arsenal to attack the darn stuff. On the plus side, the state rushed J's applications through the red tape obstacle course and he's now covered by the state for all the medical things he's going to need. His treatments can start right away.
It may take a miracle to save him without surgery, but we've seen a few miracles with B so maybe J will get one of his own too.
J's a real private person, so I won't be posting anymore about him here, but do keep him in your thoughts and prayers as he embarks on his own journey. Thanks.
I'll let you know how B's dermatologist's appt goes later this week.
AUGUST 28-Wednesday
Today's numbers: Labcorp
Hemoglobin- 13.4 (decrease) (normal-14.0-18.0)
Platelets- 101.0 (decrease) (normal-140-440)
Neutrophils- 5.8 (decrease) (normal-2.25-7.0)
White Blood Count- 8.5 (decrease) (normal-4.5-10.0)
Creatinine- 1.65 (increase) (normal-0.7-1.2)
BUN- 32 (increase) (normal 8-20)
Potassium- 3.9 (decrease) (3.6-5.0)
Alkaline Phosphatase S- 110 (normal-39-117)
Alkaline Phosphatase S- 110 (normal-39-117)
Weight- 151.4 (increase)
T shot
T shot
Today was our once monthly visit with Doc Chen.
B's graduated to once a month visits with each Doc which gets him seen about every two weeks.
This arrangement has us now driving to Scottsdale just once a month. Yay!
Today's visit was good.
Blood count numbers remain stable.
His renal numbers crept slightly the wrong way, but not enough to get alarmed about.
His liver numbers, which are really important post transplant, remain stellar. (Knock wood)
He's not losing weight and his mild GVH issues aren't causing him discomfort.
Our newest wrinkle has nothing to do with B's health.
It has to do with B's brother J's health, who was just diagnosed with life threatening, stage 4 metastatic squamous cell skin cancer.
J's uninsured and is having a heck of a time getting some kind of indigent coverage in time to save his life. While in wait mode, in an attempt to not waste too much time, we've helped him get seen by oncologists these last few weeks, to determine a plan of treatment.
Surgery is the only option for saving J's life. Immediate surgery because of how fast growing the tumor is and it's proximity to the carotid artery. But, none of the family members can afford to pay for something as expensive as that, so we are in wait mode, while the state processes the paperwork.
This is weighing heavily on the family, especially on B.
We are hoping that by the end of next week, we'll hear good news from the state and they can get B's brother's treatment underway.
While B is devastated by his brother's illness, he's now strong enough to be able to help his brother out a bit with paperwork and such, and this is helping him cope. Role reversal. It's now B's turn to help.
If you're the praying type, say a little prayer that B's brother gets good news from the powers-that-be next week and his life saving procedures can get underway.
Thanks.
AUGUST 19-Monday
Day +187
B saw Doc Hud today to address a few skin issues. He had a several AK's (actinic
keratosis)
burned off and a few potential squamous cell growths removed as well. These were sent to pathology to determine if they are squamous cell cancer.(update- pathology report confirms the two growths removed [forehead and shoulder] were indeed squamous cell cancer in situ. All the cancer was contained within the biopsy samples so no further treatment is needed of these two areas.)
His face also has what Doc Hud thinks is Seborrhoeic dermatitis and he was given a cream to apply for a few weeks to help clear that up.
The anti rejection meds B takes make him more susceptible to skin cancers so we have to really stay diligent if we see something new crop up.
Doc Hud sees a lot of bone marrow transplant patients and is familiar with post transplant skin care. He's been B's skin Doc ( and guitar playing buddy) for years, so we're glad he's got the know-how needed to remain B's go-to skin Doc.
AUGUST 13-Tuesday
Today's numbers: Labcorp
Hemoglobin- 13.5 (decrease) (normal-14.0-18.0)
Platelets- 104.0 (increase) (normal-140-440)
Neutrophils- 8.6 (increase) (normal-2.25-7.0)
White Blood Count- 10.9 (increase) (normal-4.5-10.0)
Creatinine- 1.52 (decrease) (normal-0.7-1.2)
BUN- 30 (decrease) (normal 8-20)
Potassium- 4.3 (unchanged) (3.6-5.0)
Alkaline Phosphatase S- 112 (normal-39-117)
Alkaline Phosphatase S- 112 (normal-39-117)
Weight- 149 (increase)
I love starting these blog posts with "Another good day at the Docs."
And I'm happy to report that we indeed did have another good day at the Docs.
Blood labs remain stable, renal labs show B's kidney's improved a smidge. The improvement was minimal, but hey, they didn't get worse, so we'll take that.
He's still got a few issues with Graft vs. Host disease on his skin, in his mouth and in his eyes/tear ducts, but all have been manageable so far.
Doc Schriber reduced his anti rejection med Tacrolimus (Prograf) a bit this visit (instead of one every other day, to one every 3rd day), so we'll be extra vigilant about any new GVH issues that may arise during this transition.
We discussed B seeing a neuropathy specialist, and he got the green light to cautiously proceed. He shouldn't do anything too invasive, but maybe there's something that could be done to make him more comfortable. His neuropathy is really an issue. He can't feel his feet at all which makes balancing and walking scary for him.
And then there's the neuropathy in his fingers, which took his 6 string and lead guitar playing from him two years ago this month. I am happy to say that he does try to play his 6 string almost everyday now, and has made some progress getting his neuropathic fingers to do what he asks of them.
A few chords he couldn't make a month ago, he can make now. He still gets frustrated when the chords that he says were once his 'bread and butter' chords, chords that used to be so easy for him, continue to elude him, but he hasn't given up. Thankfully, bass guitar, keyboard and singing remain musical outlets for him. He's been playing and recording in his studio almost every day. He's got about 5 or 6 songs recorded so far, including a few originals. And he did do a few lead breaks on some of them. He kept them simple but you can still hear his signature sound in those breaks. Progress.
A milestone was reached this last week. He passed the 6 month post transplant mark on Day +178.
Those first 100 days crawled by, and now, all of a sudden, we're at +181.
Time flies when you're having fun.
And we're doing just that. Having fun when we can, appreciating the simple pleasures of life, the sunrises, sunsets and all the precious moments in between.
AUGUST 9-Friday
AZ Oncology
Labs done after visit with Doc Chen.
We saw Doc Chen for the first time in almost 8 months today!
She will be seeing B in between our visits to Doc Schriber.
It was almost surreal being in the Arizona Oncology waiting room after such a long time away. The place was packed with patients. The cancer treatment business is booming.
So sad.
Most of the patients were new. I only saw two familiar patients. Hopefully the ones we didn't see are in remission and doing well. We did see quite a few familiar nurses and their faces sure lit up when they saw B.
This visit was mostly for Doc Chen to become familiar with what a 'post transplant' B looks like and to get labs done. Doc Chen's office will forward the labs to Doc Schriber so he has them when we go up there next Tuesday.
We were hoping to be able to drop by Northwest Ambulatory to say hi to the transfusion nurses while we were on that side of town, but Az Oncology was so darn busy, it took over 3 hours to get done there. By the time we were finished, we were pretty worn out, so we'll stop by the transfusion center the next time.
Doc Chen called us later and was so cute. At the end of the conversation, after she'd gone over the labs with B, she got excited and exclaimed "I'm so happy you're alive!"
Yep. We're happy he's alive too Doc.
JULY 23-Tuesday
Today's numbers: Labcorp
Hemoglobin- 13.6 (decrease) (normal-14.0-18.0)
Platelets- 111.0 (increase) (normal-140-440)
Neutrophils- 4.1 (decrease) (normal-2.25-7.0)
White Blood Count- 6.9 (decrease) (normal-4.5-10.0)
Creatinine- 1.58 (decrease) (normal-0.7-1.2)
BUN- 32 (decrease) (normal 8-20)
Potassium- 4.3 (increase) (3.6-5.0)
Alkaline Phosphatase S- 114 (normal-39-117)
Alkaline Phosphatase S- 114 (normal-39-117)
Weight- 146.5 (increase)
T shot
T shot
Another good day at the Doc's.
His blood numbers are stable, and his kidney numbers continue to go in the right direction. His kidney function is still not normal, but it's improving week by week. Perhaps within a month or two, his kidney numbers will finally be within a normal range. (His eGFR went up a bit more to 46 which is also a good thing).
I've wanted to believe all along that his post-transplant, chemo induced kidney failure was a temporary situation. My brain has trouble with anything less than hope. And while I know deep down that he's far from being out of the woods on a number of things that potentially could go wrong in these next months and even years, I will continue to believe, and hold on to the hope, that he will do well.
His weight still remains too low and he's still weak from all the muscle mass he lost since this transplant journey began.
He knows that rebuilding those muscles and getting up and moving around are key to his long term recovery.
He was pretty much set on getting a treadmill this week, but thankfully our good friend (who's a Nurse Practitioner) came to Friday's gig and when she heard he wanted a treadmill, she quickly and adamantly advised against it.
Boy was I glad she did. Not just because of how GINORMOUS those things are (and it probably would have ended up in our living room!), I was nervous he might fall off the darn thing.
Our NP friend sees a lot of treadmill related injuries and she felt uneasy too that B, with his balance and feet numbness issues, was a perfect candidate for a fall.
She recommended he get a recumbent bike instead. So, that's what we did a few days ago. And he's been riding everyday. He's determined to recover his strength and those of you who know him, know that when he sets his mind to something, he follows through and will do whatever it takes. That's why he excelled at racquetball, tennis, skiing, golf and even his music. He's always put in the time necessary to achieve the results he's wanted. I think it also helps he's a natural at a lot of stuff, but his great determination to work at being better, has served him well.
I think that same determination, applied now to recovery and regaining strength, will once again serve him well.
His GVH on his skin is getting better and better. His rash and hyper-pigmentation are all but gone.
He continues to have a touch of GVH in his mouth, but it's not causing any discomfort or issues. He also has developed gritty, dry eyes, which is another form of GVH, but he's not terribly uncomfortable. He did get a tear duct infection, but it's responding well to antibiotic eye drops.
All issues right now are manageable and not causing big problems.
He's so much better than this time last year when he was getting 3-4 blood transfusions a week to stay alive. So much better!
Life is feeling more and more normal.
B's either making music in his studio and or jamming with his friends almost daily and...
wait for it... I accepted a painting commission!
Yep, I found my way back into my studio and am finally painting again, using technology and timers to keep me connected to B just in case he needs me. So far, all's gone well.
We continue to celebrate the things that have gone right, and don't dwell on the things that have or could go wrong.
Living life today, and loving every precious moment.
Once again, if all goes well for B these next two weeks, I won't be posting an update here until after we see the Docs again.
We actually will see Doc Chen in two weeks instead of Doc Schriber. We're graduating to 3 weeks between visits with him. We haven't seen Doc Chen since January and can't wait to see her happy smiling face and give her a big hug.
More baby steps forward.
:)
JULY 9-Tuesday
Today's numbers: Clinic
Hemoglobin- 14.4 (decrease) (normal-14.0-18.0)
Platelets- 105.0 (decrease) (normal-140-440)
Neutrophils- 6.7 (increase) (normal-2.25-7.0)
White Blood Count- 9.3 (increase) (normal-4.5-10.0)
Creatinine- 1.71 (decrease) (normal-0.7-1.2)
BUN- 48 (increase) (normal 8-20)
Potassium- 4.1 (unchanged) (3.6-5.0)
Weight- 146 (increase)
B had a really good visit with his transplant Docs today.
His lab numbers were stellar for him, with even his kidney numbers improving.
His Creatinine is the lowest it's been since transplant (yay!) and his eGFR, a lab that shows the percentage of kidney function, was 42.
B's renal Doc explained to us once ( in laymans terms) the significance of that test. She explained that the kidneys have millions of thin-as-a-strand-of-hair filters, called glomeruli. This test estimates how much blood passes through these tiny filters each minute. The test result number shows the percentage of these glomeruli that are filtering. This number closely correlates to the percentage of kidney function. Low normal is 59, which would indicate approximately 59% kidney function. A person whose eGFR number is less than 15 is usually on dialysis. B has been as low as 12, (about 12% kidney function) and in the last few months he has hovered between 20-30. No dialysis, but not great kidney function.
Today's eGFR results jumped to 42. That was a very nice bump up.
On my last journal entry, after several weeks of just so so kidney lab results, I questioned just what were his kidneys doing? Had they plateaued? Were they going to get worse or were they ever going to improve more?
Today's labs indicating new kidney improvement sure put a smile on our faces.
His GVH disease on his skin continues to improve and the Doc has begun to decrease his anti-rejection drugs. (Prednisone
to 10mg a day instead of alternating 10mg/15mg every other
day.)
This will be done very slowly over the next months. If his GVH flares, we will adjust accordingly.All in all, things are good.
He's feeling better, getting stronger and enjoying his newly revamped recording studio.
He's recorded a few songs, including one he wrote for me that had me burst into tears the first time he played the rough track for me.
I adore this man and I give thanks daily that he's still here.
Once again, if all goes well for B these next two weeks, I won't be posting an update here until after we see the Docs again.
No news will be good news.
JUNE 26-Wednesday
Today's numbers: Clinic
Hemoglobin- 14.6 (unchanged) (normal-14.0-18.0)
Platelets- 113.0 (increase) (normal-140-440)
Neutrophils- 5.23 (increase) (normal-2.25-7.0)
White Blood Count- 7.5 (increase) (normal-4.5-10.0)
Creatinine- 2.07 (increase) (normal-0.7-1.2)
BUN- 46 (increase) (normal 8-20)
Potassium- 4.1 (increase) (3.6-5.0)
Weight- 143.7 (increase)
We navigated our first two weeks, in a row, away from the Scottsdale transplant team just fine. It feels simply wonderful to be spending most of our time home now.
Hard to believe it wasn't that long ago that we were living, for many months straight, in a hotel.
Home for us now feels different too. We don't have to head off for transfusions every other day as we had to do for the 16 months before B's transplant. Now, we are really home. Days in a row. Weeks in a row. Home. It's awesome.
B's labs remain stable. His renal labs have been slowly creeping in the wrong direction, but thankfully, he's still not showing any outward signs of kidney complications. He does still deal with some minor swelling in his ankles and feet.
It remains to be seen what his kidneys are doing. Are they getting better or not? For a while there, the renal labs that track kidney function, were improving with each week, but now, they seem to have plateaued or worsened slightly. I'm hoping the next set of renal labs show improvement again. Or at least not get any worse.
B's Graft vs Host disease on his skin is better. Still slightly flaring on his forearms, but for the most part, much improved.
He also had a small bump starting to form in the middle of his MOH's surgery scar(done in January just before transplant to address a squamous cell lesion) that had us concerned that the squamous cell lesion might be trying to come back. But, we saw Doc Hud, B's longtime dermatologist, last week and he thinks it's simply a skin cyst that can sometimes form on deep scar tissue. Sure hope he's right about that. We'll of course keep an eye on the bump, but for now, our fears were assuaged.
This week at our clinic visit, we asked when Doc Chen might be brought back on board, to share in some of the post transplant duties. But, Doc Schriber is still not ready, because of B's kidney and the GVH issues, to relinquish any of B's post transplant care to her just yet. Someday though, once he's comfy with how B's doing, we'll be able to see her locally in between Scottsdale visits. That would drop those trips down to about once a month. That will be nice, although I'm now completely comfortable with freeway driving, and the trip up there seems to have gotten shorter for some reason. Maybe it's familiarity with landmarks. It just doesn't seem as daunting as it once did. Of course, the monsoons are just ahead, and I'm hoping we are able to avoid being on the road during one of those. Not looking forward to I-10 in a driving rainstorm for sure.
We think B pulled a muscle in his back sometime in the last week or 10 days. He's been dealing with pretty significant back pain, which I was afraid might be his (9-11-2011) L1 back break rearing it's ugly head somehow, but the Docs think the pain is muscular. It's also higher than where the L1 is. They want B to do a 5 day steroid treatment, starting tomorrow, to see if that will help resolve the issue. Hopefully it will, because he has been really hobbled by this and he needs to be moving around more, not less.
Time will tell.
Once again, if all goes well for B these next two weeks, I won't be posting an update here until after we see the Docs again.
No news will be good news.
Fingers crossed.
JUNE 13-Thursday
Today's numbers: Clinic
Hemoglobin- 14.6 (increase) (normal-14.0-18.0)
Platelets- 101.0 (decrease) (normal-140-440)
Neutrophils- 5.10 (decrease) (normal-2.25-7.0)
White Blood Count- 7.2 (decrease) (normal-4.5-10.0)
Creatinine- 1.97 (increase) (normal-0.7-1.2)
BUN- 38 (increase) (normal 8-20)
Potassium- 3.7 (decrease) (3.6-5.0)
Weight- 142.4 (decrease)
Things are somewhat status quo.
His blood counts are holding steady within good ranges. Platelets still below normal, but they are still over 100 and that's a good thing. So much better than the single digits he had pre-transplant.
His renal labs are still not great, in fact they went a tad in the wrong direction this week, but he's not having any significant kidney complications.
He does get swelling in his feet and ankles daily, but the occasional diuretic helps him get rid of that excess water, so he's not gaining huge amounts of water weight like he did before. Perhaps the effects of the (tough-on-kidneys) antibiotics he was taking a few weeks ago for the blood infection are now reflecting in his renal labs. He's off those meds now, so maybe we'll see improvement in the next set of renal labs.
The Doc sort of scared us this visit when, after noting that B had lost 2 lbs, he mentioned casually that one way Graft vs Host can manifest is in something called 'wasting disease'. It pretty much means that no matter what is consumed, the patient will still simply waste away. Until they die.
I immediately poopawed that that might be what is making B so thin, and told the Doc that I thought the 2 lbs he lost this week were more than likely water weight. I based this on the lack of swelling in B's ankles and feet when he was weighed at clinic. B's weight does fluctuate weekly with his water retention, but he seems to hover between 139-144 pretty consistently.
But, I have to admit, that as the Doc was mentioning this possible new wrinkle, I was terrified inside that indeed B may have this. Because, despite his now voracious appetite (tastebuds are working again and steroids boost the appetite), he still just can't seem to gain weight.
I came home and jumped on the internet to research 'wasting disease post Bone Marrow Transplant' and pretty much scared myself silly. I really wish the Doc hadn't mentioned it. I'm trying so hard to stay in the moment and focus on good stuff. Some days I'm better at it than others. And really, the only way to tell if he has this dreaded side effect is if he keeps losing weight. So our daily weigh-ins have a new significance and now I'll be really pushing the calories on B.
He still does have Graft vs Host on his skin, but thankfully it seems to be improving a bit. They had upped his anti rejection meds last visit and that did seem to help. They are not going to make any changes this week to hopefully stay on top of the skin GVH issue.
So, this improvement and the fact they are leaving the meds the same 'til next visit gave the Doc confidence to finally let us go two weeks between appointments. Yes!
Another small step forward.
As caregiver, I've been pretty sturdy and focused through out this journey so far. And it's taken 100% of my time. Happily. I want him well. I want him to live. I want to grow old, well older, together. And whatever I can do to help, that's what I want to do.
But, as he's gotten a bit better, and stronger, and more self reliant, I am finding myself befuddled by what my role is now.
And with the ever lingering possibility of more complications just around the corner, I'm finding it difficult to relax and allow some time for myself. I want to paint, but my studio is isolated and I'm a bit frightened leaving him alone for long periods. But he is doing better and, in theory, I do have chunks of time I could spend in studio. I just can't seem to let myself do it yet.
My brain is in a constant battle with itself as I try to find my way back. I've been away so long. Do I still know how to paint? What if B gets sick and I don't hear him while I'm in there? Back and forth I go.
So, I'm thinking that I need a simple goal that will get me going. And I've decided I will begin artblogging again, to hopefully kickstart the painting process.
My poor Artblog has been static for a very long time.
I hope the prospect of adding brand new works of art to it and reconnecting with my online art friends will be just the catalyst to get me going again. I will post each new painting. And someday, I hope there will be more updates there, than here.
And that will be a good thing, because that will mean that B is finally doing well enough to allow us both to stretch our artistic wings. He, through music, me, through paint.
That will mean we might finally be living somewhat normal lives again.
In the meantime, if all things go well for B these next two weeks, I won't be posting an update here until after we see the Docs again.
No news will be good news.
Fingers crossed.
JUNE 5-Tuesday
Today's numbers: Clinic
Hemoglobin- 14.3 (increase) (normal-14.0-18.0)
Platelets- 116.0 (increase) (normal-140-440)
Neutrophils- 6.37 (decrease) (normal-2.25-7.0)
White Blood Count- 8.4 (decrease) (normal-4.5-10.0)
Creatinine- 1.86 (increase) (normal-0.7-1.2)
BUN- 32 (decrease) (normal 8-20)
Potassium- 4.6 (increase) (3.6-5.0)
Weight- 144 (unchanged)
After 5 days of being tied to our Scottsdale Transplant team for IV antibiotics (because of B's sudden blood infection on Day +101), it was great to be able to return home last Wednesday. We were sent home with oral antibiotics (which he finished this morning), and all these meds appear to have done their job.
He seems to be completely over the blood infection (yay!) and is getting better everyday.
They drew some blood cultures to confirm this today, but I suspect those cultures will be negative for infection based on how well he is doing. They'll call us if more meds are needed.
We almost convinced the Docs today to let us go two weeks between visits, but because B's Graft vs. Host disease is still flaring a bit on his skin, they vetoed the idea.
But, in most regards, B is still doing quite well considering.
It will be a long climb back towards normalcy, but so long as it's steps forward, and not steps back each day, I know he will get there.
They increased his Prednisone just a bit to see if that will help the GVH retreat. Once the GVH stabilizes, and they can start decreasing the anti rejection drugs, we should get our wish of every other week doctor visits granted.
We are relishing these days we're able to spend at home doing normal everyday stuff and look forward to having more and more.
MAY 28-Tuesday
Today's numbers: Clinic
Hemoglobin- 13.7 (decrease) (normal-14.0-18.0)
Platelets- 106.0 (decrease) (normal-140-440)
Neutrophils- 7.04 (decrease) (normal-2.25-7.0)
White Blood Count- 9.1 (decrease) (normal-4.5-10.0)
Creatinine- 1.84 (decrease) (normal-0.7-1.2)
BUN- 35 (decrease) (normal 8-20)
Potassium- 3.8 (decrease) (3.6-5.0)
Weight- 144 (unchanged)
CMV-negative
CMV-negative
A good news day.
B's improving. And he's feeling better. We should go home (to Tucson) perhaps by tomorrow. Yippee!
And, his kidney numbers did not get worse, in fact they improved despite being on the tough-on-kidneys meds necessary to fight the infection. Yippee again!
We love good news days.
MAY 27-Monday
Day +103
Weight 143 (decrease)
Got the results of the blood culture taken Saturday morning. It was positive for gram positive cocci in clusters. Staphylococcus. It was positive at both the site where his central line enters his chest and his bloodstream.
Today it was decided to take that central line out. I think this will go a long way in getting this infection under control.
He had this same blood infection in June of last year and at that time it was his port that was the source of the infection. He got better after antibiotics and taking that port out and I know he'll get better quickly now that this line is out too.
And while he is definitely more immune compromised than last year because of transplant, I'm feeling confident he will still get better real soon. And I'm counting on his kidney's behaving despite the extra stress these meds can cause.
This Day +101 setback is the hiccup we know can happen. Anytime. Day +101 or Day +201.
It's why we keep our bags packed just in case. And we were happy to find we were able to respond to the emergency just the way we planned.
He's feeling better and we should be home within a few days.
We've got our village of friends and family keeping the home front safe and sound again. Thanks to them and thanks to all of you for your positive thoughts, healing energies and prayers.
MAY 25-Saturday
Today's numbers: Hosp
Hemoglobin- 13.9 (increase) (normal-14.0-18.0)
Platelets- 122.0 (decrease) (normal-140-440)
Neutrophils- 11.43 (increase!) (normal-2.25-7.0)
White Blood Count- 13.6 (increase!) (normal-4.5-10.0)
Creatinine- 2.16 (increase) (normal-0.7-1.2)
BUN- 45 (increase) (normal 8-20)
Potassium- 4.5 (increase) (3.6-5.0)
Weight- 144 (increase)
Yesterday, Day +100, B had that wonderful, magical day we were hoping for.
During the day, he was energized, getting his studio cleaned and organized, and then he finished the day making music with friends on the patio of El Saugarito.
Everyone was oohing and ahhing at how great he looked.
He looked and felt fantastic. Fantastic.
It was me who was a bit under the weather yesterday, with an all day headache that turned mean and ugly by the time we got home from the gig last night. In a bit of role reversal, it was B taking care of me into the wee hours of the morning. I finally fell asleep around 3am. I was awakened at 6am when I heard B moaning.
Instantly, I knew something was wrong. He was sick, with chills. He didn't have a fever, but I knew the meds he's on suppress fever, so I ignored that fact, and acted on what I was seeing. He was sick.
I could also see that his central line looked infected so I called the transplant team to see what we needed to do.
Answer. Get him seen, asap. Choices. Northwest Hospital or get him back to his team and hospital in Scottsdale. I chose option two. I felt by the time we went through Northwest's ER and got the Docs there to understand the special concerns of a Bone Marrow Transplant patient, I could have B back with his team in Scottsdale.
We walked through the Bone Marrow Transplant unit's doors this morning at 9am.
The Docs are very glad I made the choice to come here.
His central line is indeed infected and the infection is probably throughout his bloodstream.
IV antibiotics were started right away and cultures done to see what bug is the culprit.
He's feeling really funky. Blood infection is a bad thing.
Now we wait for the meds to start working, keeping our fingers crossed that they do and that they don't beat his kidney's up too much in the process.
What a difference a day makes.
MAY 22-Wednesday
Today's numbers: Clinic
Hemoglobin- 13.2 (increase) (normal-14.0-18.0)
Platelets- 130.0 (increase) (normal-140-440)
Neutrophils- 5.69 (decrease) (normal-2.25-7.0)
White Blood Count- 7.7 (decrease) (normal-4.5-10.0)
Creatinine- 2.05 (decrease) (normal-0.7-1.2)
BUN- 44 (increase) (normal 8-20)
Potassium- 3.9 (decrease) (3.6-5.0)
Weight- 140.9 (decrease)
Skin biopsy postive for GVH
Skin biopsy postive for GVH
Day +98!!
Two more days til the magic +100.
Technically nothing really changes in our day to day living, all the post-transplant safeguards still need to be followed, we still need to be cautious with protecting B from all the junk that could try to take advantage of his infant immune system, but B actually reaching that number will have a magical quality to it. We really weren't sure he'd get to this first big goal.
Today's labs were also magical.
Almost all his numbers are doing really well, going up or down the way they're supposed to.
His kidney numbers are getting better and better (although not yet normal), and his hemoglobin actually broke 13!
He's become like the Energizer bunny, going non-stop.
He's singing and playing and having fun.
Really, if his peripheral neuropathy was better, he's be well on his way to being his old self. That dumb stuff stole his guitar playing, his golfing, his bowling, his athletic way of life. He can't feel his feet up to his knees at all. Completely numb, which makes walking and balancing a challenge, much less participating in sports.
And of course, we all know the toll the neuropathy in his fingers took. When he was in a daily fight for his life, the loss of guitar playing wasn't at the top of his list of concerns. Now, as he's getting his life back, and as he's begun to feel better, regaining strength and a sense of normalcy, he's missing the guitar playing a lot.
I'm still trying to get him to at least pick one up now and then and try to play, but he tells me he'd have a better chance at flying across the room by flapping his arms than he has getting his atrophied, numb fingers to make a chord on a guitar. And it's just so very frustrating to him.
Those fingers, that once did whatever he asked of them on a guitar neck, won't listen or behave at all anymore.
For the most part, he doesn't dwell or get morose or glum that I can see, but darn it, every now and then I do see a brief moment wash over him. Like when he's listening to something he recorded in that other lifetime or hears a new song with a guitar lick he likes and realizes he can't just pick his guitar up and play it like he would have before. I see these moments hit him and hurt him and it hurts me.
When I console him, he tells me, no worries, it's okay, he's alive!
And alive he is, just two days away from day +100!
He's having fun despite the things he's lost. He's rediscovering what he still has and is embracing the new possibilities. Smiling. Laughing. Determined.
Showing all of us who love him, through his approach to life, that the biggest magical thing of all, is still his wonderful spirit. A spirit that refuses to be bound by what has gone wrong, but instead, is making the most of what has gone right.
MAY 16-Thursday
No labs today
Weight H-139
Day +92
This post is about thank-you's. And kuddos. Gratitude. And love.
As we celebrate B's returning strength and health, I want to send a shout out to our amazing, and I mean AMAZING, transplant team in Scottsdale.
Without them, this process would have been unbearable.
As a team, these folks saved B's life.
From day one, from the administrative folks, who took care of the all the backstage important stuff, to the Docs, nurses and techs, who laid their healing hands on B along the way, every single person who had a hand in helping B, has been phenomenal.
So, we want to thank them. Thanking them in this blog seems tiny, a skywriting airplane writing THANK YOU in letters a thousand feet high would be more appropriate, but this will have to do.
First, the administrative team-
Thank you Crystal, Jane, Ginger, Sheila, Kathy, and Jocelyn for scheduling clinic appointments and tests, coordinating the donor search, handling the complex insurance issues, helping us to find lodging, finding B's phone (Jocelyn), and all the other backstage things you all do that help make this team run like a well oiled machine. You were all there to answer any question, anytime, and you were always friendly, warm and kind. We never heard a sour word or saw a frown on anyone. Always upbeat and encouraging. Always.
The Nurse practitioners-
Thank you Gail, Nicole and of course B's own personal NP, Rochelle. An earth angel if there every was one. So smart, so nice, so caring, so full of hope, so informative, so patient, so kind (and B really likes her hair!). I am sure the stars were aligned perfectly when you were sent into B's life. He adores you.
Our clinic nurses-
Carol, Jean and Donna. Wow. Just wow. Transplant is a scary thing and that first week, as things were getting underway and we got to know you girls, we knew you were the real deal. Your skills, your calm knowledgeable manner and your kindness helped keep our terror level manageable. Thank you.
The 2C transplant floor nurses-
This team of nurses has been together for 15+ years.
And oh my goodness, words will not be sufficient to thank these incredible girls. During the month that B was on this floor, each one of them became a friend.
A few of them spent a lot of time with B, helping him through the most difficult days and nights of some really tough stuff. There is a special place in heaven for folks like these. Their kindness, compassion, knowledge, patience, smiles, skills, attention, calmness and caring was beyond phenomenal. They were B's lifeline. Daily, they gave him hope and strength.
Just mentioning them by name here doesn't seem adequate, it seems that at the very least they should definitely be thanked with writing in the sky, but here goes.
Chris and Iris (who handled the infusion of B's life giving stem cells), Kristie, Kathleen, Jess, Kathy, Mellisa, Amanda, Karen, Vanessa, Jenny, Carolina, Vicki, and Michelle.
You guys rocked!!!! Thank you soooooo much!!!!
And to our wonderful techs, Andie, Tara and Sewa, who were also amazing and caring beyond words. Thank you. We felt the love.
Finally, thanks to our two Transplant Docs-
Dr. Jeffrey Schriber and Dr. Adrienne Briggs. These guys know their stuff. Their expertise in Bone Marrow Transplant is evident and their bedside manner is pretty darn good too. Very likable and easy to communicate with. Patient and kind. Down to earth. Daily, they spent whatever time was needed with us to to answer our many questions. They were always making the tough choices when dealing with conflicting info/recommendations from other specialists, and they made the 'whys' of their choices understandable. We sure like these Docs.
And speaking of specialists, we got BIG time thoughtful care from Dr. Thomas, Dr. Amin, Dr. Iyengar, and Dr. Bibb.
Somebody mentioned once or twice that B's transplant was going to be a tricky one because of his age and co-morbidities. Thanks to these specialists for helping B's transplant Docs navigate the rougher waters.
Also, I don't want to forget to mention Andy, the pharmacy guru and B's PT techs, Kevin and Kerri.
I sure hope I didn't miss anyone. If I did, my apologies. There are a few faces we did see here and there, but we never met you by name. Thanks for your part in the big picture.
Oh, and two more people need a big thank-you-
We are grateful to our local oncologist, Dr. Laurie Chen, who directed us to this incredible transplant team. She also called B while he was in hospital in Scottsdale, giving him encouragement along the way. She's been wonderful. It won't be long before she gets to take on some of B's post transplant care, saving us the occasional drive to Scottsdale. Can't wait to see her again.
And lastly, thank you to the kind angel, B's stem cell donor. She won't see this because of the one year anonymity requirements, but B sure hopes he can someday tell her thanks, by phone, in a letter or in person... or all three!
We would like to add, that if you, or someone you know, ever need the services of a Bone Marrow Transplant team (and we sure hope you won't), we would highly recommend giving this team consideration. A Center of Excellence.
Everyone has heard of the Mayo Clinic (who we hear has a very good program as well), but we can give a first hand knowledge point of view now, and we would wholeheartedly recommend the Scottsdale Healthcare Cancer Transplant Institute and it's remarkable team.
Thank you everyone! Thank you! You are all the best!
MAY 15-Wednesday
Today's numbers: Clinic
Hemoglobin- 12.2 (increase) (normal-14.0-18.0)
Platelets- 107.0 (decrease) (normal-140-440)
Neutrophils- 5.86 (increase) (normal-2.25-7.0)
White Blood Count- 8.4 (decrease) (normal-4.5-10.0)
Creatinine- 2.35 (increase) (normal-0.7-1.2)
BUN- 36 (decrease) (normal 8-20)
Potassium- 4.1 (decrease) (3.6-5.0)
Weight- 143.0 (increase)
The Doc did a biopsy today of the skin rash that's been bothering B this last week and a half. They want to confirm it's Graft vs. Host disease. They have upped one of his meds that addresses GVH, but it can be a bit hard on the kidneys, so they don't want to be using this higher dose if his rash is not GVH. Every Doc who's looked at his rash seems to think it's GVH so a negative biopsy would be surprising.
The increase in medication seems to have made B more comfortable from an itching standpoint. Glad to see that. He was really, as he put it, "itching like a man on a fuzzy tree".
Other than the rash, B is doing and feeling, so much better. It's tangible. I can just tell by looking at him that he's stronger. His baby blues are clear and bright. There's more spring in his step. I'm sure his hemoglobin breaking 12 helps, but just getting further along in the transplant process, getting further away from the devastating effects of February's marrow emptying chemo, these are all helping his recovery.
His kidneys are still being rascals, but they aren't debilitating or affecting his quality of life. Some minor issues with edema, but, thank goodness, he doesn't need dialysis at this point.
We are on a once a week schedule to see the Scottsdale Docs, but they told us it was finally okay to give up our hotel room there. We'd been asking if we could give it up, but were being told to keep it rented, just in case we needed it in an emergency.
But now, I think I can say we are officially home. No more long term hotel living.
Life is starting to feel almost normal.
Pinch me.
MAY 13-Monday
No labs today
Weight-H 143.5 (increase)
Another wonderful weekend home.
B's mild Graft vs Host disease has remained mild, so we didn't need to rush up to Scottsdale for additional treatment this weekend.
The skin rash and itching have not gotten better, but they have not worsened, so we are status quo for the time being.
He seems to be getting stronger everyday. His hemoglobin count being almost above 12 is probably why. Hemoglobin's job is carrying oxygen to your cells and when your hemoglobin is low, you will feel pretty funky and tired.
B's count hovered around 8 for almost 16 months. In fact, he spent a good deal of those 16 months struggling, with regular red blood transfusions, to keep it above 8. A normal count is is 14-18, so you can see that 8 wasn't cutting it. He was a tired boy. Funny how your body's cells like having plenty of oxygen.
Because he's getting stronger, I've pretty much stopped hovering over him during all his waking hours. If he needs help with anything, he asks, but for the most part I'm letting him do all he can on his own.
He's walking quite a bit (without his cane), and doing a bit of physical therapy when he (or I) remembers to initiate a session.
We need to get better at that. Perhaps an alert on our iPhone would help. I know I need all the help I can get with my memory. Don't get me wrong, I remember a lot, and I especially remember the really important stuff (meds).
But sometimes, I just zone out for a while and let the world go by. Or I get caught up catching up on chores around the house, lose track of time, and suddenly realize I've forgotten to do something that needed doing. Oh well. Like I said, the really important stuff (meals and meds) is still getting done in a timely way, and I'll give myself a pat on the back for that.
Getting caught up in what I'm doing to the point of letting the world go by is why I haven't started painting again. I have this fear that the canvas will capture me completely (which is my normal way of painting) and I'll forget something important that needs doing for B. I'm still working on a solution for this that won't stifle my creativity. I know I will find a way soon to get back in the studio and still keep B healthy and fed.
In the meantime, we're still enjoying each and every moment home, celebrating the big and little victories that B's been blessed with lately.
Life is good.
MAY 9-Thursday
Today's numbers: Clinic
Hemoglobin- 11.9 (increase) (normal-14.0-18.0)
Platelets- 118.0 (increase) (normal-140-440)
Neutrophils- 5.56 (decrease) (normal-2.25-7.0)
White Blood Count- 7.8 (decrease) (normal-4.5-10.0)
Creatinine- 2.14 (decrease) (normal-0.7-1.2)
BUN- 37 (increase) (normal 8-20)
Potassium- 4.4 (increase) (3.6-5.0)
Weight- 141.3 (decrease)
Day +85.
We were able to return home again after a quick visit to our Scottsdale Transplant team.
B does have a touch of Graft vs Host disease, which is presenting as an itchy skin rash, but it's mild and the Docs don't seem overly concerned.
We have been admonished however to keep a close watch on it and report any worsening of the rash immediately and to be prepared to return quickly to the team should it indeed get worse.
We aren't taking these warnings lightly.
While B was in hospital the first month of his transplant, we witnessed first hand folks who had been doing fine post-transplant, some with 100+ days behind them, then suddenly, GVH or an infection would pop up, and they became very very ill. In a few cases, the patient died. It was both sad and frightening.
One young man in particular stands out. We met him in clinic when B was getting his first out-patient chemo treatment just before transplant in early February. This young man and his mom approached us and offered to be of any assistance they could provide.
"If you need help shopping, an errand run, your laundry done, anything, just give us a call" the mom had said as she handed us a slip of paper with her (and her son's) name and number on it. Helping hands had been provided to them while her son was going through the initial stages of his transplant and they were paying it forward. He was doing well. He was a big young man, who smiled warmly as he offered words of encouragement to B. I'm not sure what day he was post-transplant in his own journey that day in February, but he seemed to be doing fine. Then, a few weeks later, while B was still in hospital, this young man was admitted into the room right next to B. He'd gotten a sinus infection. We had heard that perhaps the sinus infection might have occurred because he hadn't been wearing his mask as much as he should have when outside in the wind. Well, that initial sinus infection could not be controlled and he became more and more ill over the next few weeks. Then, B was released from hospital and we weren't able to follow this young man's progress closely anymore. Yesterday, we learned that this sweet, 31 year old gentle giant had passed away April 8th.
I can't get this young man and his mom off my mind. My heart aches for this family.
This is the reality of transplant.
You can be recovering nicely, and then boom, you're not.
I must add that, along with the folks whom we've seen that haven't done well, we have also witnessed some wonderful success stories. We try to stay focused on those stories of success and hope, but we remember well those who've struggled and lost.
Post transplant complications and illness can come on quickly and the faster the Docs can start treatment to get ahead of it, the better your chance of survival.
We have many instructions for post transplant care and you can bet we don't take any of them lightly.
So, I'm keeping a close watch on the rash, bugging B every few hours to let me see how it looks. Our bags remained packed, just in case.
And, you can be sure if it's windy while B's outside, he will be wearing his mask.
We were able to return home again after a quick visit to our Scottsdale Transplant team.
B does have a touch of Graft vs Host disease, which is presenting as an itchy skin rash, but it's mild and the Docs don't seem overly concerned.
We have been admonished however to keep a close watch on it and report any worsening of the rash immediately and to be prepared to return quickly to the team should it indeed get worse.
We aren't taking these warnings lightly.
While B was in hospital the first month of his transplant, we witnessed first hand folks who had been doing fine post-transplant, some with 100+ days behind them, then suddenly, GVH or an infection would pop up, and they became very very ill. In a few cases, the patient died. It was both sad and frightening.
One young man in particular stands out. We met him in clinic when B was getting his first out-patient chemo treatment just before transplant in early February. This young man and his mom approached us and offered to be of any assistance they could provide.
"If you need help shopping, an errand run, your laundry done, anything, just give us a call" the mom had said as she handed us a slip of paper with her (and her son's) name and number on it. Helping hands had been provided to them while her son was going through the initial stages of his transplant and they were paying it forward. He was doing well. He was a big young man, who smiled warmly as he offered words of encouragement to B. I'm not sure what day he was post-transplant in his own journey that day in February, but he seemed to be doing fine. Then, a few weeks later, while B was still in hospital, this young man was admitted into the room right next to B. He'd gotten a sinus infection. We had heard that perhaps the sinus infection might have occurred because he hadn't been wearing his mask as much as he should have when outside in the wind. Well, that initial sinus infection could not be controlled and he became more and more ill over the next few weeks. Then, B was released from hospital and we weren't able to follow this young man's progress closely anymore. Yesterday, we learned that this sweet, 31 year old gentle giant had passed away April 8th.
I can't get this young man and his mom off my mind. My heart aches for this family.
This is the reality of transplant.
You can be recovering nicely, and then boom, you're not.
I must add that, along with the folks whom we've seen that haven't done well, we have also witnessed some wonderful success stories. We try to stay focused on those stories of success and hope, but we remember well those who've struggled and lost.
Post transplant complications and illness can come on quickly and the faster the Docs can start treatment to get ahead of it, the better your chance of survival.
We have many instructions for post transplant care and you can bet we don't take any of them lightly.
So, I'm keeping a close watch on the rash, bugging B every few hours to let me see how it looks. Our bags remained packed, just in case.
And, you can be sure if it's windy while B's outside, he will be wearing his mask.
MAY 7-Tuesday
No labs today
Day +83
We remain home, our home in Tucson.
Everything's going well for the most part. B has started to have some bothersome itching issues on his torso, but I can't see a rash or redness to help indicate what it might be.
We let the Scottsdale Transplant team know about it and they aren't alarmed, so we didn't have to go back early to see them.
We are actually hoping the itching is a mild case of Graft vs. Host, something B's avoided so far. Graft vs Host can come in many forms. The life threatening, organ attacking super yukky stuff or more milder versions, such as a skin rash.
The Docs don't like patients getting the super yukky stuff, but they do like to see a patient get a case of the milder version of GVH.
It has to do with something called Graft vs Tumor. When they see no evidence of GVH in a patient, it could mean that GVT is also absent and the patient's original disease (MDS and Lymphoma for B) may be more likely to recur.
If they see a mild case of Graft vs Host, it is usually accompanied, invisibly in the background, with Graft vs Tumor, which helps cure the patient's original disease.
GVT can't be seen visually, but almost always accompanies GVH. Hence, they like to see a bit of GVH. So, we are hoping this itchy thing turns out to be a mild GVH. It seems weird to wish for something that will make B a bit sick, but I guess that's what we're doing.
We had another wonderful weekend, full of music and friends.
B's played with so many folks over the years and we've made so many good friends, we can't wait to reconnect with more of you as these next few months unfold.
Back when I started this blog, it was met with resistance from a few in the family who wanted B's journey to be a private thing. Both B and I were of a different opinion and wanted to share his experience through this blog.
First, because B was a public performer and also part of a wonderful team at IBM, there were many, many friends and co workers who would be pulling for him, keeping him in their thoughts and prayers. And, because of his illness, it might be difficult to personally keep in touch while he was going through treatments. We thought the blog would help keep these friends up to date, even if we lost contact temporarily because of his illness. And when we did get to speak with friends, they would be somewhat aware of where he was and what had been happening. We wouldn't have to go into as much detail explaining to each individual person what had gone down since they'd last talked to B.
Secondly, we hoped that maybe someone going through a similar journey of their own with cancer would find encouragement and hope here. We did hear from one person in particular who wrote us to share that she had found comfort and strength here when suddenly last year she began her own journey.
This weekend, we were reminded of how connected we can be through this blog.
A friend, whom we haven't seen in a while, was playing guitar at a wonderful concert we went to Saturday night. On a break, he didn't initially recognize B (the masked man) as he walked by, then he saw me, and did a double take of B.
He was so happy to see him doing so well. He told us he keeps up to date almost daily here on the blog, and knew just where B was in his journey. He even mentioned he gets a bit nervous if I don't post for a week or so (as has happened a few times when Blogger is being a bugger and won't let me post the latest update). I don't know why I was surprised to hear he follows the blog, but both B and I were delighted he keeps B in his thoughts.
So good morning R. Thanks for the nice words of encouragement. And thanks for coming by to jam with B back in January, before he set out on this transplant adventure. It's always great to see you.
MAY 2-Thursday
Today's numbers: Clinic
Hemoglobin- 11.4 (increase) (normal-14.0-18.0)
Platelets- 98.0 (decrease) (normal-140-440)
Neutrophils- 4.32 (decrease) (normal-2.25-7.0)
White Blood Count- 6.8 (decrease) (normal-4.5-10.0)
Creatinine- 2.28 (decrease) (normal-0.7-1.2)
BUN- 35 (decrease) (normal 8-20)
Potassium- 3.6 (decrease) (3.6-5.0)
Weight- 143.7 (increase)
CMV- negative
CMV- negative
Day +78.
All the labs are looking pretty darn good. Renal labs still slowly going in the right direction, and blood labs stable. CMV still negative.
A friend asked B today how the Bone Marrow Transplant experience has been so far, now that he's got a few months behind him, compared to what he expected it to be, before it all began.
"Based on what the Doctors were telling me going in (40% mortality odds), I thought I was probably going to die early on, and never expected to go home to Tucson again. So it's been great! I feel good. I'm very happy to still be alive."
And happy is exactly how we're both feeling, each and every hour.
Simple joys, simple pleasures.
Home. Alive. Simply wonderful.
All the labs are looking pretty darn good. Renal labs still slowly going in the right direction, and blood labs stable. CMV still negative.
A friend asked B today how the Bone Marrow Transplant experience has been so far, now that he's got a few months behind him, compared to what he expected it to be, before it all began.
"Based on what the Doctors were telling me going in (40% mortality odds), I thought I was probably going to die early on, and never expected to go home to Tucson again. So it's been great! I feel good. I'm very happy to still be alive."
And happy is exactly how we're both feeling, each and every hour.
Simple joys, simple pleasures.
Home. Alive. Simply wonderful.
APRIL 29-Monday
Today's numbers: Clinic
Hemoglobin- 11.3 (increase)
Hemoglobin- 11.3 (increase)
Platelets- 112.0 (increase)
Neutrophils- 4.85 (decrease)
White Blood Count- 7.8 (decrease)
Creatinine- 2.41 (decrease- 27 days post dialysis)
BUN- 37 (decrease-27 days post dialysis)
Potassium- 4.1 (increase-27 days post dialysis)
Weight- 142.5 (decrease)
T shot
Day +75.
Once again, a good lab day.
Creatinine and BUN levels down again. Yes!
Blood counts up again. Yes!
We are still seeing the transplant Docs in Scottsdale, but we are graduating to driving up to see them, as opposed to living full time in a hotel nearby to be close to them.
We are digging the transition.
It was great to sleep in our own bed, watch our own TV, with it's rewind and DVR features (with my attention span deficit, I have really missed rewind), cook in my own kitchen on my gas range (not a fan of electric stoves), have an oven! (no oven in the hotel), heck, I could go on and on, but you get the gist, home rocked!
For the first time since late last year, B also got to gig again on Friday with John, Jeanne and Tom at El Saguarito, playing his U-Bass and singing a few tunes. (The wind behaved so he didn't have to sing through a face mask).
There is so much catching up to do over the next few months, so many things we want to do, so many folks we want to see.
We can't wait!
After we'd been home a few days, and knowing the answer was "zero", I teasingly asked B, "So, how many blood transfusions did you need this week?"
I asked this because at the time we left town for the Bone Marrow Transplant, B was tethered to the Az Oncology and the Ambulatory Transfusion facility 3-4 days a week.
Transfusions were a full time endeavor to keep him alive.
Being in Tucson, and not needing to head out for a transfusion every other day was strange. That was our Tucson routine. For over 16 months. (He's been transfusion free now for 9-10 weeks.)
Transfusions were a full time endeavor to keep him alive.
Being in Tucson, and not needing to head out for a transfusion every other day was strange. That was our Tucson routine. For over 16 months. (He's been transfusion free now for 9-10 weeks.)
So, the occasional trip to Scottsdale for follow-up visits will feel simple in comparison to the routine we once had. And, as time goes on, our trips to Scottsdale will become less and less frequent.
We know that there will be hiccups along the way, that something could come up that may require a longer visit with the Scottsdale Transplant team, and we will remain prepared for those challenges.
It's almost a given with transplant, especially this early on (Day+75), that along with the ups B's been having lately, there will be some downs.
Especially as the Docs adjust his rejection meds these next few months. And, since his kidneys are still not normal, they could also be the cause a snafu.
Being mentally ready for, (but not scared of), these potential downs, prepared to ride the waves, will go a long way in getting through them.
The further out from transplant, the less likely it will be that things could go wrong, but still being fairly early in the process, we won't be complacent, or take things for granted. They tell us the first year post-transplant is the most crucial time.
We will remain in the moment, follow the post-transplant guidelines and do what needs doing, whenever and where ever that takes us.
It's almost a given with transplant, especially this early on (Day+75), that along with the ups B's been having lately, there will be some downs.
Especially as the Docs adjust his rejection meds these next few months. And, since his kidneys are still not normal, they could also be the cause a snafu.
Being mentally ready for, (but not scared of), these potential downs, prepared to ride the waves, will go a long way in getting through them.
The further out from transplant, the less likely it will be that things could go wrong, but still being fairly early in the process, we won't be complacent, or take things for granted. They tell us the first year post-transplant is the most crucial time.
We will remain in the moment, follow the post-transplant guidelines and do what needs doing, whenever and where ever that takes us.
In the meantime, we are celebrating home and the wonderful, delicious time we get to spend there.
We are celebrating life!
We are celebrating life!
APRIL 25-Thursday
Today's numbers: Clinic
Hemoglobin- 11.1 (increase)
Hemoglobin- 11.1 (increase)
Platelets- 106.0 (decrease)
Neutrophils- 5.18 (increase)
White Blood Count- 8.4 (increase)
Creatinine- 2.96 (decrease- 23 days post dialysis)
BUN- 43 (decrease-23 days post dialysis)
Potassium- 4.0 (increase-23 days post dialysis)
Weight- 143.7 (increase)
Day +71.
We are really happy with lab results.
Other than B's platelets, which just went down a smidge, his numbers all went in the right direction.
The blood counts rose, the renal labs dropped, just the way we want.
His Hemoglobin finally broke 11 for the first time in over a year!
His Creatinine has dropped below 3.0. Granted, 2.96 is still way too high, but all the renal numbers continue to drop, so perhaps with time, they will someday be back in the normal range.
His Creatinine has dropped below 3.0. Granted, 2.96 is still way too high, but all the renal numbers continue to drop, so perhaps with time, they will someday be back in the normal range.
Also, the test for that scary CMV virus was negative again.
Yep, all good news.
But the best news of all, was when the Doc gave us the okay to... GO HOME!
I think a lot of folks thought we've been in Tucson all this time but actually B's transplant was done in Scottsdale. We basically had to move to Scottsdale to be near the transplant clinic, hospital and team. We left Tucson on February 4th.
I think a lot of folks thought we've been in Tucson all this time but actually B's transplant was done in Scottsdale. We basically had to move to Scottsdale to be near the transplant clinic, hospital and team. We left Tucson on February 4th.
80 days ago.
Family and friends kept our home happy and occupied, but we weren't there.
Family and friends kept our home happy and occupied, but we weren't there.
For the month B was in hospital, I lived with him right there in the hospital. When he was released from hospital, we began living in a hotel, which is where we've been living these last few months.
Hotel living has been an adventure, especially when all of B's meals had to be home cooked (with rigid dietary restrictions) and the hotel kitchen was about the size of one of those toy doll kitchens little kids play with. The freezer was smaller than a bread box and the kitchen had no oven. Hence my crock pot (lasagna) adventures.
Also, early on, hotel living included bed bugs, mold, and the nasty smell of animal urine, to name just a few issues, but eventually everything was straightened out.
We changed rooms 4 times and hotels twice. And these were somewhat upscale joints, the Marriott and the Hilton.
Those who know me well, know that I'm a bit of a germ phobe, so I was really stressing during the time we were ironing out the hotel problems, especially since B was supposed to be released into a very clean environment, and the hotels were struggling to meet just a regular clean standard, much less a Bone Marrow Transplant patient's clean standard.
We ended up at the Hilton, which was an okay place. They addressed any concerns I had immediately, and even provided a free wheelchair (for the few weeks that B needed one). But, they are still a hotel. Not home.
B shared with me recently, that on that day we left Tucson, he wasn't sure he'd ever see home again.
This evening, as we turned onto our street and drove up to our home, our home, we were overcome with emotion. He made it. He made it!
There truly is no place like home.
We are so incredibly grateful to be home and look forward to reconnecting with our Tucson families and friends over these next weeks and months.
Now, please excuse me while I pop a pizza into the oven. Pizza. Another thing B's been craving and no, there was no crock pot recipe for that.
:)
Now, please excuse me while I pop a pizza into the oven. Pizza. Another thing B's been craving and no, there was no crock pot recipe for that.
:)
APRIL 22-Monday
Hemoglobin- 10.8 (increase)
Platelets- 115.0 (decrease)
Neutrophils- 4.10 (decrease)
White Blood Count- 7.2 (decrease)
Creatinine- 3.19 (decrease- 20 days post dialysis)
BUN- 48 (decrease-20 days post dialysis)
Potassium- 3.2 (decrease-20 days post dialysis)
Weight- 143.5 (decrease)
Day +68.
We had a wonderful 3 day weekend without any need for the clinic or hospital.
We ate, relaxed, watched movies, and B spent a good deal of time saving Lara Croft from the bad guys. It was a nice weekend.
Despite B's newfound freedom to patronize restaurants (which we did), I still did quite a bit of cooking.
I'm getting this cooking for two (without leftovers) down, and have started to use this cute little 2 qt. crockpot to make meals that don't leave any leftovers. B's not allowed to eat any leftovers because of his fragile immune system.
I found some great crockpot recipes on Food.com.
This site will also adjust the recipes for you, with a box on every recipe where you can change 'serves 6-8' to 'serves 2' and voila!, it will adjust all the ingredient amounts to suit your needs. Gotta love technology.
I made Lasagne (another thing he's been craving) for two in our great little 2 qt crockpot and it was really yummy.
Today it was back to reality and back to clinic.
Thankfully, B continues to do well, with his lab results being relatively good.
Thankfully, B continues to do well, with his lab results being relatively good.
His kidney labs continue to s-l-o-w-l-y drop, but they are dropping, without dialysis, so we're feeling pretty good about this, despite the snail's pace.
His platelets have been declining a bit lately, but we're hoping it's just part of a normal rise-and-dip post transplant cycle. They are still above 100, a number that would have taken 4 platelet transfusions to achieve pre-transplant, so we're thankful he's not at a dangerously low level.
His platelets have been declining a bit lately, but we're hoping it's just part of a normal rise-and-dip post transplant cycle. They are still above 100, a number that would have taken 4 platelet transfusions to achieve pre-transplant, so we're thankful he's not at a dangerously low level.
There is another possible explanation for this drop in platelets that could be concerning.
That CMV virus I've mentioned in the last few posts can also make platelets drop. They tested his blood again today for signs of that virus and we should know by Thursday if it's showing up again in his blood (it takes about 3 days to get that lab result). Fingers crossed that result will be negative.
That CMV virus I've mentioned in the last few posts can also make platelets drop. They tested his blood again today for signs of that virus and we should know by Thursday if it's showing up again in his blood (it takes about 3 days to get that lab result). Fingers crossed that result will be negative.
He also lost more weight darn it. But I can see the swelling in his feet and ankles went down quite a bit, so I'm thinking these lost 5 lbs were water weight, not body mass. I sure hope so.
I'm pushing food on him like an old Italian grandmother. "Eat this, come on eat this, eat some more" and still he loses weight. Mangiare un po 'di più.
I, on the other hand, not wanting him to eat alone, am packing on the pounds as I match him meal for meal, snack for snack, so I know this food is fattening.
I, on the other hand, not wanting him to eat alone, am packing on the pounds as I match him meal for meal, snack for snack, so I know this food is fattening.
His metabolism has definitely changed with this transplant.
Many, many moons ago he recorded a version of Lyle Lovett's "Skinny Legs" for me, singing and playing his heart out. It went something like this:
"See that boy with that guitar
He's got skinny legs, like I always wanted
A girl-friend in his car
He's got skinny legs, like I always wanted
Bet you'd love me if I were as skinny as him"
He got the girl and now he's got those 'skinny legs', like he always wanted.
APRIL 18-Thursday
Today's numbers: Clinic
Hemoglobin- 10.7 (increase)
Platelets- 124.0 (decrease)
Neutrophils- 4.58 (decrease)
White Blood Count- 8.0 (decrease)
Creatinine- 3.46 (decrease- 16 days post dialysis)
BUN- 50 (decrease-16 days post dialysis)
Potassium- 3.7 (decrease-16 days post dialysis)
Weight- 148.6 (decrease)
Day +64.
B's renal labs continue to improve slowly. Without dialysis. Yes!
The Docs are really quite happy with how he's doing post transplant and are comfortable with seeing him only twice a week now, rather than every single day.
Granted, if he has any issues on his days off from clinic, he can be seen immediately, but days off are definitely progress.
The CMV virus that had shown up in Monday's labs was not present in today's labs. Woohoo!
So, no worries about that right now. And maybe no worries ever. It is a dormant virus and very well could remain dormant forever. Fingers crossed, because as I mentioned before, this virus is a real bad guy and if it wakes up, it could be deadly, so we want it to stay asleep forever.
Platelets- 124.0 (decrease)
Neutrophils- 4.58 (decrease)
White Blood Count- 8.0 (decrease)
Creatinine- 3.46 (decrease- 16 days post dialysis)
BUN- 50 (decrease-16 days post dialysis)
Potassium- 3.7 (decrease-16 days post dialysis)
Weight- 148.6 (decrease)
Day +64.
B's renal labs continue to improve slowly. Without dialysis. Yes!
The Docs are really quite happy with how he's doing post transplant and are comfortable with seeing him only twice a week now, rather than every single day.
Granted, if he has any issues on his days off from clinic, he can be seen immediately, but days off are definitely progress.
The CMV virus that had shown up in Monday's labs was not present in today's labs. Woohoo!
So, no worries about that right now. And maybe no worries ever. It is a dormant virus and very well could remain dormant forever. Fingers crossed, because as I mentioned before, this virus is a real bad guy and if it wakes up, it could be deadly, so we want it to stay asleep forever.
Screening B's blood for potential issues is an important part of the post-transplant compromised immunity hyper-vigilance that's necessary to make sure that CMV or any other sleeping viruses don't try to take advantage of B's fragile immune state.
These Docs are staying on top of any little thing that could present. They have 20+ years of Bone Marrow Transplant experience and have learned what to expect, when to expect it and how to prevent it from all the folks who have walked this transplant path before B. We love this transplant team!
B's platelets dropped a bit, but ups and downs will be the norm for a while, so no concerns here. His hemoglobin continues to climb, which helps him feel less tired. Can't wait 'til that number is in the normal range (14.0-18.0). He hasn't had a hemoglobin count of 11+ for well over a year (he's at 10.7 today) and we know he'll feel so much better once his red blood count becomes normal and more efficient at carrying oxygen to all the cells in his body.
So, things are good. I sure like saying that. Things are good.
(knock wood)
And this time, B gets three days off from clinic, so unless he hits a bump in the road this weekend, we'll talk again Monday.
Smiles.
These Docs are staying on top of any little thing that could present. They have 20+ years of Bone Marrow Transplant experience and have learned what to expect, when to expect it and how to prevent it from all the folks who have walked this transplant path before B. We love this transplant team!
B's platelets dropped a bit, but ups and downs will be the norm for a while, so no concerns here. His hemoglobin continues to climb, which helps him feel less tired. Can't wait 'til that number is in the normal range (14.0-18.0). He hasn't had a hemoglobin count of 11+ for well over a year (he's at 10.7 today) and we know he'll feel so much better once his red blood count becomes normal and more efficient at carrying oxygen to all the cells in his body.
So, things are good. I sure like saying that. Things are good.
(knock wood)
And this time, B gets three days off from clinic, so unless he hits a bump in the road this weekend, we'll talk again Monday.
Smiles.
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