Start With a Smile

I have noticed that I smile when I wake up in the morning. It's not the result of a conscious thought, and it happens every day. It's a quick, small smile, a ripple on a pond hinting at an unseen fish.

Notes from yesterday's doctor's appointment:

• My platelets are significantly down, again. The last four readings have been 105, 96, 46, and 32. (150 is the start of normal.) 105 was the peak of a consistent increase since my transplant, and 96 was the first reading after starting sirolimus to combat GVHD.
• Sirolimus causes reduced platelets in 30% of patients, so it's a likely culprit, and I will no longer be taking it. If this change causes my GVHD to rage, I may start taking tacrolimus (ProGraf) again. I took tacrolimus after each transplant. The two drugs are closely related.
• Everything else is good: weight's up, hemoglobin and white blood cell counts normal. I have less rash than last week, though it still pops up here and there. Yesterday, I had an intense outbreak on the backs of my hands. Bright red and painful. Today, it's gone.

In Remission

It has taken me a couple of weeks to realize that all those perfect numbers from my last bone marrow biopsy mean that my leukemia is in remission. That two-word phrase is very useful for providing a short answer to people who ask about my health. It captures both having achieved the treatment goal while acknowledging the potential impermanence of the new state.

Notes from yesterday's appointment:

• I have traded diseases, leukemia for graft-vs-host. I consider this an excellent trade, like trading a homicidal roommate for one with some extremely annoying habits.
• My platelet counts fell dramatically since the previous week. This may be due to ongoing GVHD, but my doctor isn't sure. She tells me not to worry about it, and she tells me she knows I will anyway. She's right. Next week, we will do blood tests to look for causes.
• My doctor says few patients do as well after their second transplant as I am doing.

In remission. Weak, with a confused and misguided and suppressed immune system that provides woefully inadequate defense against infection while still managing to mess with my skin and who knows what else. But in remission. Sweet words.

In the PredniZone

I am two and a half weeks into my own personal Steroid Era, and it's great!

I started taking prednisone 18 days ago to manage out-of-control graft-vs-host symptoms: dramatic weight loss (despite 3000 calories per day), persistent full-body rashes, and muscle and tendon pain that prevented me from fully extending my arms. I needed help opening my special drinks (Boost, Ensure). I was also generally weak and tired.

Since beginning the new medication, I have gained about 14 pounds! A couple of days ago, for the first time in months, I had no active rash! My arm muscles are still tight and painful, but I can fully extend them! Recently, I opened a Boost drink without even using my special rubber gripper cloth!!!

Any downsides? Well, I'm writing this at 3 in the morning. Difficulty sleeping is one of the common side effects, along with increased appetite (check), feeling of a whirling motion, indigestion, increased sweating, mood changes, nervousness. Two out of seven isn't bad, especially when one of them (appetite) is a benefit at this point.

Maybe I should count mood changes, too, but I think "mood changes" would be ups and downs, whereas I'm just up.

I read that an "exaggerated sense of well-being" is listed as one of the serious side effects requiring medical attention. So if I get too excited about walking down the stairs without holding the railing, or too pleased with myself for how my Asian cole slaw turned out — and who wouldn't pat himself on the back for going all out and toasting the sesame seeds and the slivered almonds? — we might have to call the doctor.

In the meantime, I'm going to enjoy being in the predniZone.

Celebrate?

Last summer, my 100-day biopsy provided the first indication that I was relapsing after my transplant, leading to a longer and and more difficult road to a second transplant. The second time through has been harder in many ways, physically and mentally, and that difference extends to the recovery.

One hundred days after my first transplant, I weighed around 190 and I was training for a 5K. I was working well over 50% time. My hair had come back.

One hundred days after my second transplant, I weighed less than 155 and I am not able to run at all. I am working less than 25%, and I can't open the dryer with my right (dominant) hand or jars with any hand. And my skin keeps falling off.

But...

Where it counts, I'm way ahead of where I was at this point the first time. Yesterday, I got the results of the 100-day bone marrow biopsy for my second transplant.

Out of 400 cells examined, none carried the deletion-7 genetic marker of my leukemia. 0%!
Out of another 400 cells, all were XX (and therefore from my female donor). 100%!

Perfect scores!

My blood counts continue to be very good as well, and I have started gaining weight since beginning prednisone a week ago. And while I still have some new rashes, the percentage of body in a rashy state is lower than it was a week ago.

This is all great news. In fact, it is the best news I could have received regarding my leukemia.

But...

I thought I would be in a more purely celebratory mood if I got this news. Instead, I'm happy, for now. I'm beating leukemia, for now. This is a big difference between rounds one and two. I've gone from thinking of leukemia as something you can beat to thinking of it as something you can beat, for now. 

If you're lucky, it stays beaten for long enough that if it comes back, the treatments have improved so much that beating it again has become routine and precise and effective and a lot less dangerous to the patient. And, eventually, something else kills you, years down the road. Victory!

In the meantime, I am celebrating, in my way. I live for now. I literally stop and smell the flowers. I don't care what passersby think of the bald man sticking his nose into every flowering tree and shrub he can find. When Jan and I take evening walks, I try to track down the various perfumes that waft our way. It's been a strange spring, with lots of blooming schedules pushed earlier and on top of each other, but it's been a great spring for a guy with a nose that's hungry to smell them all.