Graduation

Older son Jake graduated from Haverford this past weekend. It was everything a graduation should be: beautiful weather, family, and a graduate who has found a passion to pursue and who got about as much out of the college experience as it is possible to get. Money well spent!

The medical, blog-related aspect to this event is that I got my doctor's permission to attend. Crowds are dangerous, but much of the activity was outdoors and I was able to surround myself with a lot of fresh air. My father flew out to Champaign so that we could drive to the Philadelphia area for the graduation, since plane travel is still off limits. (A hundred people in a sealed container for a couple of hours — not a good idea for people in my condition.)

Not much to report otherwise, medically. My blood counts from a week ago Monday were very good, with the platelets jumping nicely from 38 to 61 in a week. A large amount of rash, but that has since moved into and through an extraordinary amount of shedding, and currently all seems quiet on the GVHD front.

Not Quite Ready to Run

Last summer, I was training to run a 5K in the fall, and my training was on track for something in the neighborhood of 30 minutes. My leukemia, however, had other plans.

These days, I walk almost every day, but not very fast. Weakness is part of the slowness, but the main issue is neuropathy, or nerve damage. I have had some mild peripheral neuropathy since last spring, in my feet. It showed up a month or two after my first transplant, a slight numbness in my toes and forefeet. Neuropathy can be a delayed side effect of chemotherapy, and that probably explains mine. Last summer, my neuropathy was mild enough that it had no effect on my mobility.

During treatment leading up to my second transplant, which featured four rounds of chemotherapy, my neuropathy got noticeably worse. My feet were more numb than before, and a mild numbness extended past my ankles and partway up my lower legs.

I have received different answers from doctors about the future of the numbness. My doctor says it's unpredictable. Another doctor said it usually heals, but very slowly. A third said he's never encountered a leukemia survivor who complained about numb feet. I don't know whether this means that it eventually resolves, or that his patients have all been relatively sedentary people who don't care about numb feet, or that when you survive leukemia you just don't get that worked up about your feet being numb.

I am bothered by it, because it prevents me from running. There is the lack of perception, which makes for unsteady foot plants. Worse, I don't have full muscular control over my feet. My right foot, in particular, has recently started slapping down with each step, especially when I try to walk fast. I also can't raise my right forefoot past the 90 degree point, which makes it easy to stub my toes on flat surfaces.

This past Illinois Marathon weekend included a 5K on Friday night, and I entered it. My goal for the 5K was to break an hour, slightly faster than 20 minutes per mile. Walking with me were Mara, my father, and Jake. Once upon a time, I used to line up on the very front line of 5Ks and occasionally win them. This time, we started at the back. Not near the back, but at the very nobody-behind-us back. It's a different look.

And off we went. Step, slap, step, slap, passing a lot of people. We didn't time the first mile. The second mile was around 16 minutes. (Once upon a time, I would have already finished a 5K by the time 16 minutes had passed.)

With about a half mile to go, I was still feeling good. Step, slap, step, slap. I tried a little bit of jogging, about 20 yards. It felt good — easier than walking. After some more walking, another interval of jogging, cut short by a spectacular tumble as my droopy right foot caught the pavement and spilled me hard onto the concrete. 

An EMT who happened to be walking at my pace stopped to tend to me, and another walker offered some wipes to stanch the bleeding from my hands. My knees and right ribs hurt, as did my right ankle. After sitting in the middle of the street for a few minutes, I was ready to finish my 5K, with my hands wrapped in wipes and a sore ankle adding to the unevenness of my gait. 

I crossed the finish line in 55:18 (17:48 pace, 153 out of 168 in my age group). 

Dad, me, and Mara at the finish. I am the one
holding the wipes. Jake is just off  the left edge
of the image. (Photo credit: Brightroom)

Post-transplant PR! Then I headed straight to the medical tent, providing just about the only action they had all night. The medical volunteers joked as they washed and bandaged my wounded hands that Jan sent me there to test their readiness.

The price for my first running steps since September was bruised and bloody hands; bruised shoulder, ribs, and knees; a sprained ankle; and a scolding from my doctor.

The sprained ankle a few days later, swollen and bruised.

Worth it!

Family Matters

We had a wonderful weekend. My parents and both sisters came out from the Boston area. Older son Jake gave up one of his last weekends at college to be in Champaign, and younger son Paul gave up being a testing-the-limits teenager and instead went with helpful and pleasant young man. Cousins Aimee and Jess came down from Chicago. Brother Karl couldn't make it, but his wife did her part by continuing to challenge (beat) me regularly in online Scrabble (most of the time).

The occasion was the Illinois Marathon, of which Jan is one of two co-directors. I am on the race committee as the webmaster, plus other duties as assigned. The race is in its fourth year, and it is a very big deal in our little Midwestern community.

The weekend was a chance for my family to share in the excitement and to help out as needed. And we put them to work: parking, hospitality suite, race number pickup, portapotty line wrangling, sag wagon driver... When they weren't volunteering for the race, my parents and sisters worked through a list of yard work: pruning, weeding, mulching... The yard looks great! We also got a black bean soup and a blueberry pie out of the sisters.

It was so nice to have my family here all together, for fun, rather than one by one to look after me as they have so often since the start of 2011.

Most enjoyable of all was to watch Jan in full event director mode. She and her co-director have built a great team that puts on one of the best marathon weekends in the country. The whole team works hard, but Jan and Mike outwork everybody else. An event of this size is not just a weekend or weeklong commitment, either. The planning and the work go on all year, building to a crazy peak over the final month.

And, for the last two years, Jan has managed to do this with one hand tied behind her back: a sick husband stuck in Chicago for months at a time and unable during those times to help much with the race, or household chores, or parenting.

It's a little scary to think of what Jan will do when she is able to put even more of her energy into the race next year. Can't wait to see it.

Notes from Monday's appointment:

• My weight continues its steady increase, up 2 pounds in the last week, for a total of 19 since the low point a month ago.
• Platelets are on the way up (32 the previous Monday, 30 on Thursday, 38 this past Monday).
• I am still in the study I thought I was dropped from, since the protocol includes "stop taking the sirolimus if it looks like it's doing bad things to you." When my platelets reach a safer level, we might resume the sirolimus at a very low dose. Or maybe not.
• I tested positive for platelet antibodies, which alone could explain the drop in platelets. However, given the way my platelet count has correlated with my sirolimus dosage, my doctor thinks it is more likely a combination of the antibodies and the drug that is responsible.

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.