Inside the Silver Lining, a Dark Cloud

On the outside, encouraging news. My skin rash was nearly totally under control, my muscle contractures were gone, and I was gaining weight. In other words, I was getting over the GVHD.

Inside that silver lining was a dark cloud. My 180-day biopsy preliminary results show that the leukemia has returned. (The other results that take longer won't change this conclusion. They will just provide additional information about the extent of the return.) This was not a surprise, given the recent downward trend in blood counts, but I didn't have to face it and cry about it until yesterday, because it wasn't confirmed.

The two events — GVHD goes away, leukemia comes back— are, I assume, linked. Given a choice, I'll take the GVHD, thank you.

Jan and I are going up to Chicago Monday to talk about next steps: maybe trying to trigger graft-vs-leukemia; maybe another transplant, perhaps with a different donor; maybe something else we haven't heard of previously.

After the first transplant, I was thinking "cured!"

After the second transplant and the clean report card at 100 days, I was of course hoping for long-term remission but mentally prepared to fight again in a few years, perhaps when treatments were more effective and less dangerous. Instead, we're back at it six months since I left the hospital and four months since I was able to come home.

These recent months of nearly normal life have brought me a lot of simple joy, and I am grateful for that. It's painful to think about merely going back into the hospital, let alone the other darker possibilities.

I was trying not to think of the elephant in the room, without success. But even if you manage to avoid thinking about the elephant in the room, it can still crush you.