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From the series of Doctor Dolittle children’s books, a creature called the pushmi-pullyu is introduced. It is a gazelle/unicorn cross with two heads, one head at each end of its body. The pushmi-pullyu usually only uses one of its heads to talk, reserving the other for eating (thus allowing it to eat while speaking without being rude) and claims that its great-grandfather was the last unicorn. In the 1967 classic movie “Doctor Dolittle,” the pushmi-pullyu is presented as a two headed llama.
After my bone marrow/stem cell transplant, one of the primary concerns is graft versus host disease. You have probably heard of graft rejection where something like a kidney is transplanted and the concern is that the body will reject the graft. In such a case the body’s immune system attacks the transplanted kidney as a foreign object. In the case of graft versus host disease (GVHD), the transplanted stem cells grow an immune system that may see the entire body as foreign and begin to attack it. There are typical areas that GVHD is most likely to happen and there are varying severities of GVHD. Most doctors say that a little GVHD can be an indicator that the new immune system will be more likely to kill any subsequent cancer cells.
Enter Tacrolimus or “tac,” as it is frequently referred to in the biz., is the current preferred immunosuppressive medication for BMT patients. See my previous post on how this medication got its name 😉 So, with a new immune system, it is difficult to know just how it will interact with the host. As such, tac, is used to put the reins on the new immune system. You can guess that there needs to be a balance, and it can be delicate. Too much tac could mean an ineffective immune system. To little tac could mean serious GVHD issues. When I began to understood this initially counterintuitive system, the first picture that popped into my mind was the pushmi-pullyu. When I was in my childhood and first introduced to the pushmi-pullyu, I found it to be oddly confounding yet intriguing. I feel similarly about Tacrolimus.
Thank you for your continued prayers, love and support. God bless you!
Tacrolimus: the Greek god of Immunosuppression
It may seem counterintuitive to replace a person’s immune system and then put them on a medication to suppress that same new immune system. However, that is the common best practice to prevent graft versus host disease (GVHD). More on that later. For now, let me tell you that it is one of the most important medications I have been on since my transplant. The doctors and nurses pay a lot of attention to the level of Tacrolimus in my blood. Too much or too little is very undesirable. Every morning between 3-5 AM the nurse would draw blood and after the “Tac” level came back, adjust my dosage as needed. After being discharged, I have had this test done 2-3 times a week as part of an outpatient visit.
It was always “Marsha, Marsha, Marsha” er… Tac this, Tacro that, Tacrolimus, Tacrolimus, Tacrolimus! And on and on! It was time to have some fun with this. While still in the hospital, each time a new Dr. or nurse would come in and mention anything to do with Tacrolimus, I would very seriously ask them if it was true that Tacrolimus was named after the Greek god of immunosuppression. Even the brightest of them would pause for a few moments while the gears turned and their response was conjured. One nurse even helped me convince another nurse that it was true! Last I knew, my partner in crime still had not come clean with the one we duped.
Some of the doctors really got a kick out this and my oncologist played along and added, “That is right and Sirolimus is Tacrolimus’ meaner brother!” Sirolimus is another immunosupression med that apparently has more severe side affects. Is this all too much geeky medical humor? Are any of you still reading this? Have a great day!
Today is D+50! A day for every star on the flag! I’m 50 days post transplant, halfway to the 100 days that I need to live near Stanford. There have been a few bumps in the road but nothing unheard of given the circumstances. My blood counts are on track and I’m taking walks daily. It is hard to tell how much my energy level may be increasing overall because I’m still rather tired on a regular basis. I’m putting in the work and expect things will continue to improve.
Happy Independence Day!
Generic immune system
Everything is on track! After getting out of the hospital once again for the second time earlier this week, I still had 3 appointments in the ITA. As of Friday 6/7, my blood counts and medication levels are good! The plan is to move to ITA visits 2 times a week for the time being. They also put me back on dairy with some exceptions. Still on low microbial diet, so everything has to be home cooked or big brand frozen. No berries, no soft cheeses.
I get excited seeing my counts up and the doctors and nurses keep telling me I’m a baby. Er, my immune system is infantile…? That is to say that while the counts are up, the variety of cell types is still very generic and not ready to take on the world. So, even with the canister mask, they don’t want me going to the grocery store, church or the like.
While on average, I have improved energy levels over what I had in the hospital, it is still relatively low. Getting cleaned up and ready for the day is tiring. An otherwise casual short walk is tiring. Also mental activity can be tiring. So, my plan is to keep at it little by little to improve energy levels yet not over do it. I can feel stressed easily when I expect to do anything at pre AML levels. It is an ever evolving process to try to be a little more active one day to the next but not over do it or get frustrated for one reason or another.
Dan vs. Heart-o-tack-o-blood-o-clot-o-pulmonary-embolism
Friday night 5/32 I began to have severe chest and head pain as I tried to go to sleep. It was getting worse so I went to the couch to sit up. We called the BMT and ended up in the emergency department. While there, the pain got worse, nearly unbearable. They first tried to give aspirin which I declined as I am on several medications that call for no NSAIDs. They seemed shocked that I said no. I was shocked that they apparently did not look at what meds I was already taking. Then they went with Tylenol, then oxy-something, then morphine before the pain began to ease up about 7am I think I was able to get some rest.
While I was cycling through the various pain meds, I also had several EKGs, two CT scans (head and chest), two x-rays (head and chest), a sonogram of my legs and went through I don’t know how many emesis bags. When I woke up Saturday afternoon, they told me I had a “mini-heart attack.” Then they later told me I had a blood clot in my right calf (deep vein thrombosis) that a bit broke off and went to my lungs (pulmonary embolism). At another visit, they said it was not a heart attack but I have not gotten to the bottom of that yet. I recall them saying that the heart attack was evident due to the presence of certain proteins or some such.
So, I went in Friday night and spent Saturday and Sunday night in D1 the BMT wing next to E1 where I had my transplant. They put me on blood thinners and I recovered quickly. I wanted to go home Saturday but they wanted to keep me one more night to make sure I was okay. I was still having headaches but not as bad. And there was a good chance high levels of another medication “Tacrolimus” I was on was causing the severe headaches.
This experience was by far the most painful part of this adventure. And to be quite transparent, it was a very uncomfortable, even a scary feeling to have such pain with every breath, even with the most shallow breathing I could manage.
Turns out, that this was something that started my last week or so in E1 after the transplant. It was on a lighter scale, was not as painful and did not last as long, but was attributed to esophageal irritation since the EKG showed fine and it happened in conjunction with taking my bedtime meds. It also happened in conjunction with an evening walk and then laying down flat in bed. It happened in the apartment the Thursday night but to a lesser extent as well. I think the reason it was so bad Friday night is likely because I took a much longer walk round the apartment complex that evening and probably loosened up the clot more. I now add two blood thinner injections, morning and evening to my medication list.
I’m still standing!
On Tuesday 5/28 we moved into an apartment that is just 10-15 minutes from Stanford Medical. It is a lovely one bedroom, newly remodeled unit in a large complex that appears to have the majority of the buildings in some state of remodel. We are so grateful to be able to stay here. Between the subsidies from Kaiser and Stanford that we qualified for now trying to make ends meet while on disability, our monthly portion is very reasonable compared to the market rate in the area… this is heaven sent!
On Friday 5/31 we went back to the hospital 🙂
All that glitters is not gold
I tend to post when there is noteworthy news, I’m feeling okay and rested. As a result most of these posts tend to be positive. And that is good, however, while things have gone rather great on the whole, I don’t want any of you to get the idea that having AML is something you would like to try. Nor would I want you to think that I’m always happy and feeling good. I am human, I am so easily exhausted, sometimes sad, sometimes lonely, sometimes apathetic and so on…
Thank you for your support, love, prayers… that help me not get stuck in a rut. God bless you!
New lamps for old
As I leave the hospital BMT unit E1, I trade the IV pump on wheels for a 3M Rugged Comfort 6500 Respirator. They gave me the respirator shortly after being admitted for the transplant. Post transplant, I have to wear it when they clean my room and when I’m not in my room. That means when I walk around the E1 floor or to visit other patients in E1.
Now, I have to wear it when I’m not in my apartment. I can also take it off in the car if the car AC recirculation is turned on. A friend in E1 gave me some covers made from Superman fabric to go over the nice pink filters .
Great news! Engraftment is official and I’m getting out of the hospital today 5/28! While in the hospital, they take daily blood draws for various test, the primary set of tests are Complete Blood Count (CBC). My CBC numbers indicate that engraftment has happened AND that various numbers are high enough that I don’t have to be in the hospital! I’m moving to an apartment just ~10 minutes away!
Day +9, Engraftment tomorrow?
My numbers appear to be coming up! It has only been two days of uptick in my WBC count 0.2 increase for the last two days! Yesterday my neutrophil absolute count was N/A and today it is 0.3 K/uL or 300. At 500 they consider engraftment has happened! There is a good possibility that tomorrow night it will be 500. That means they will discharge me soon and I’ll live near Stanford until I pass the 90-100 day mark. The next step will be outpatient visits ~3-5 times a week for the duration. And lots of rest…
Thank you all for your support in so many ways, especially your prayers on behalf of my family and me!