Thursday, July 31, 2008

System crash

When I last posted, I was on my way to Boston for an appointment at the Dana-Farber clinic. I had worked up to running a little more than two miles and was hoping to take a walk along the Charles River. It was the day of the Boston Marathon, and I was feeling inspired by the thought of all those runners pushing so hard.

Instead, I was admitted to Brigham and Women's Hospital.

I had had a low-grade fever all weekend, and I knew something was wrong, but I didn't know that it was serious. Turns out that all my blood counts had fallen. "I can't let you go home like this," my nurse practitioner, Melissa Cochran, said. After consulting with my doctor, she said she would need to perform a bone marrow biopsy. I had had one just a few weeks earlier and I was "clean," with no signs of leukemia. But my low counts were alarming.

Shortly after I was admitted, one of my doctors came to my room and said that there were no signs of leukemia in the bone marrow -- great news -- but also there were few signs of any activity -- bad news.

I stayed in the hospital for about three weeks while they tried to figure out what was wrong with me and what to do about it. My platelets went so low that I had nosebleed after nosebleed. One time after a blood draw, I woke up drenched in blood. I thought I was bleeding to death.

I was back to pacing the pod, worry weighing me down. I was back to doing leg lifts in the bed. I thought of the progress I had made after my bone marrow transplant in October and of the state I was in now when I didn't even know if I'd make it to the point when I could start over again.

It turned out that I had suffered a late "graft rejection," meaning my body was rejecting my donor's cells. I learned that I would need another transplant, preceeded and followed by "light" chemotherapy to weaken my own immune system so that the donor cells could take over again.

After that, I would start all over again at Day One, when running even a quarter of a mile would be an unlikely achievement.

One of the nurses said I should consider this an "episode" rather than a setback. OK then. How do you deal with an episode that sets you back? First you realize that it's OK to be sad or anxious or just plain grumpy. You don't try to make those feelings go away. Then you try to maintain your sense of humor and perspective. You nurture the hopeful feelings that are poking through the pain. You appreciate all that help that's being given to you. And then you go back to taking your little baby steps.