Fear Itself

There's a dark little corner of the mind where you cram all the stuff you don't want to think about. You know, thoughts about losing a loved one in a car wreck--especially a child, fears of financial ruin, health worries real and imagined. Living with a disease like leukemia unfortunately provides ample opportunities to process information that's frightening. The little corner becomes a little bigger and a little more toxic, and every time you try to slam the door shut, there's stuff sticking out that you shove in only to have other stuff spill out in another spot. In the past two weeks, I started to let myself think that maybe I've beaten this nasty disease. The door was firmly closed; nothing was oozing out around the edges. It felt good. No, it felt exhilarating. I wasn't even worried about my recent bone marrow biopsy, I felt so confident. Last week, I posted the partial results indicating my blood was genetically all male, with no evidence of leukemia. The panic room in my brain shrank to the size of a pea.

Yesterday, I found out that the chimerism tests painted a slightly different picture. These tests are a bit more sensitive than a biopsy. These tests show I still have two donor cords, but there's also some of me. My blood chimerism showed 2% me; my marrow, 1%. That's nothing, really, and still no sign of leukemic cells. But the chimerism analysis of my t-cells, which are part of my immune system, indicate that 62% are mine, 38% my donors'. My doctor says the results are excellent, and from the zero leukemia point of view, they certainly are. Even so, my terror alert level immediately went to red, and even though I'm using all my mental strength trying to cram panic back into its special corner, it's leaking out everywhere.

What am I so afraid of? Relapse. The way a transplant's supposed to work is that you receive not just new healthy blood, but a new immune system. The new system is what keeps any residual leukemia in line, destroying the clones before they overwhelm the healthy blood. My latest tests show I have a hybrid immune system, that there's been a truce called between my system and the donors'. There's evidence that a situation like this increases the chance of relapse. I can't keep the thought of relapse contained to a small area in my brain, although I know I have to try. For one thing, fearing relapse won't prevent it. If I eventually do relapse, then I'm wasting this precious healthy time living in the dark ages. And relapse may not be in my future at all. This is just another challenge I'm going to have to face and manage.

I've already had some help. This morning I wrote emails to two women who've also undergone transplants for leukemia. I've never "met" them face to face but I feel I know them and they know me. When it comes to this stuff, they're experts. Both wrote back to me, offering sympathy, understanding and support. They know what it's like to battle not just leukemia, but the unending worry about the future. Their kind responses helped mop up some of the mess. Fear hasn't been vanquished, but it's taking up a slightly smaller piece of my brain right now. Thanks guys.