Learning, and Forgetting, Lessons About Pacing Myself
Last updated: April 2023
When I got home after my stem cell transplants, as soon as I felt a little better, I’d cautiously move around.
Building up my ability after treatment
First, it was walking around the house, then out the door. Next, it was walking to the corner. When that walk of about five minutes was less tiring, I inched further.
And then, boom, I sprang into action…and fell flat on my face.
Not literally on my face, but figuratively. In other words, I overdid it. The burst of energy for a minute felt so much like my old energy that I forgot I wasn’t my old self. I had to do better at pacing myself.
I got the first transplant, in 2003, when I was otherwise healthy. I thought it was odd that the doctor said I was healthy EXCEPT FOR having leukemia. But the point was that my otherwise good health helped me withstand the treatment pretty well. In any case, it seemed like one day I was running a 10K race –– 6.2 miles –– and the next I was at Brigham and Women’s Hospital in Boston getting chemotherapy. I wrote an essay for The New York Times about how this race saved saved my life.
When it was time to build back my strength, after I had put my toes in the water, my mind said I was still that healthy runner. But my body said otherwise. I had to learn to go more slowly. I eventually got back to tennis and running. When I relapsed nearly four years after my transplant, in 2007, I was more angry than upset. “But I was going to do a triathlon,” I said to the doctor. Without treatment, though, I would soon feel worse and worse.
Another setback to recover from
I got more chemotherapy and my second transplant. Then six months later, I got graft failure.
My doctors thought the graft failure was a fluke. When the unrelated donor agreed to donate again, I got more conditioning and got his cells for a second time. I didn’t have much time to try to get better, because six months later, I relapsed. This time, they found a new donor, who I later learned was a friend of a good friend who lived nearby. The recovery was tougher. Due to complications including kidney failure and a coma, I was in the hospital for nearly four months. At one point, I couldn’t even walk or talk.
I do two things per day
But I worked hard. I inched back towards a semblance of my old self. My daughter, who was not yet driving, needed me to take her places. I said that I had to pick two things to do in one day. If I tried to do more, I suffered the consequences of fatigue and depression. And if one was a big deal that took more effort, I would just do the one thing.
As I write this, it is 13 years after the fourth transplant. You would think I would have learned about the need to pace myself. But I often don’t slow down. One day when I had gotten my running legs back, I felt so good that while running around a lake near my house, I didn’t watch where I was going and tripped over a big root. This event earned me a concussion and an ambulance ride to the hospital. Two weeks later, I fell off my bike and ended up back in the hospital. Among other misadventures, I have also tripped UP the steps of the Paris Metro and belly flopped onto the train.
I still must pick and choose
On Saturdays, I like to do two things. One is a 9:30 “functional strength” class at our local Y. We lift weights and move in various ways. The other is a 1:30 tennis clinic on clay courts at the Holyoke (Mass.) Canoe Club. Not too long ago, on a day when I did both, my tennis suffered by the end of the two-hour clinic.
I tried to remember the lessons of my recovery from my transplants. The next week, I did just the exercise class. But I missed the tennis. I went back to doing both. Again, my tennis was pathetic. At the end of the lesson, when we play, my partner and I were bageled. (This made-up word means that your score was a big fat zero, like the hole in a bagel.) It was embarrassing.
When the choice came around again, I picked just the tennis. I figured there were other exercise classes, and the outdoor season was waning. My tennis was good, and I felt good about making a mature choice.
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