Consumed by blood counts

This past week was so much better than last. On my weekly visit to the Dana-Farber clinic on Aug. 11, my counts had dropped. As anyone who has battled leukemia knows, you learn more than you’d ever thought you’d know about blood counts. You can get obsessed with them.

Going up is good; going down not. There can be good reasons for counts to drop, or there can be bad reasons. Especially after chemotherapy and after transplant, they go up and down. It’s normal. But when your low counts have signaled a problem in the past, it’s hard to avoid the panic that comes with the association of bad times.

The day they were down, Melissa Cochran, my nurse practitioner, said there were many possible benign causes. She told me to stop taking Valcyte, an antibiotic that can lower counts. Also I had shingles, which could lower my counts. Finally, it is common for counts to drop around Day 60 (meaning 60 days post-transplant), which is about where I was. She said they would do another blood test to check on the percent of donor cells to my cells. They call this the chimerism.

When I first found myself in transplant land, I was surprised at the use of this word scientifically. I associated it with mythology, as in: “a mythological, fire-breathing monster,” or “a horrible or unreal creature of the imagination; a vain or idle fancy.” I hoped that I was not turning into a creature.

The fourth definition seemed to fit the bill. The chimerism, I learned, is “the condition of being a genetic chimera.” Then I looked that up and, sure enough, discovered that in genetics it is “an organism composed of two or more genetically distinct tissues.”

I guess that would now be me.

In July, I had been 80 percent donor. If the donor percent was up, great. If it had gone down, they would change the dose of some of my immune suppressant medications. “I shouldn’t panic if it goes down, right?” I asked.
Right, Melissa said.

I used my techniques as best as I could during the week: Walking, yoga, talking to friends, sitting on the couch with Joe, hugging the dog, writing, and, of course, breathing. I made sure I took time to do breathing exercises I had learned in yoga.
My mind constantly drifted back to my fears that I was rejecting the donor as I had after my first allogenic transplant.

This past Monday morning, Aug. 18, I waited an hour and a half in the clinic. I came armed with my usual bag…a novel, the day’s New York Times, and leftovers from Sunday’s Times. I did OK until the last half-hour, when my heart began to pound.

Finally I got into a room, and Dr. Alyea came in shortly afterwards. “Good news on several fronts,” he said.

The chimerism came back at 90 percent donor, and my white count and platelets were up. My hematocrit was down to 25, but since I had seen that go down and then come back up (with help from transfusions and a shot) the last time, I wasn’t really concerned. He said I should get a shot of Aranesp to jump-start red blood cell production. I practically bounced to the infusion room to get the shot.

“Congratulations!” he said.

I felt like I exhaled for the first time in a long time. I had been holding in so much anxiety that even when I had focused on breathing, it hadn’t been a naturally relaxed breath. You don’t know how worried you were until the worry lifts.

Everything seemed brighter. I hate clichés but this one seems true: I felt like a had a new lease on life.