Harder Than I Thought

This whole post-transplant recovery thing has been harder than I thought. Around this time last year, I was giving leave at my various odd jobs (odd as in part-time and varied, not odd as in strange) in anticipation of getting admitted to the hospital very soon for a bone marrow transplant. I can’t believe it’s been a whole year since then. From a “big picture” point of view, I’m doing very well compared to this time last year, when I was feeling pretty normal but had some underlying, subtle signs of a relapse of my immune disorder brewing.  Elevated liver enzymes, high inflammation markers, and the haunting realization that my body had reached its maximum capacity for my toxic chemo all pointed to transplant as the only real cure for my disease. So why did life seem so much easier then than it does now?

The truth is, life is easier when you have a plan, know what you’re fighting, and know what to expect, more or less.  You can get prepared rather than just “be patient,” as I’m having to do now. Months before transplant, I started accumulating parking passes, comfortable hospital clothing, knitting materials, and Otter Pops, among other things. I set aside magazines, asked a friend to teach me to knit, boxed up my favorite movies and games, and even had an early birthday party, since my 26th birthday would take place in the hospital. On February 7, the day I got admitted, I was ready.

Nine-plus months post-transplant, there are no more milestones left to reach, but only the endless waiting, waiting, waiting for my immune system to fully recover, as measured by my lymphocytes, monocytes, and various other obscure cells and functions that are beyond my comprehension. It’s easy to grow weary and even depressed by this waiting process that’s entirely outside my control. I got As my whole life, but no matter how hard I try, I can’t get an “A” in immune system recovery. However helpful they might be, no amount of medication, exercise, diet, or happy feelings will “make” my lymphocytes suddenly shoot up; they simply take time to accumulate and become functional. I suppose it’s a gift that I’ve been forced to confront the fact that life is so obviously out of my control, since I don’t believe any of us actually has control over our own lives, only over our decisions. But in order to remain hopeful and determined at this unpredictable stage of my life, I need to remember what motivated me and helped me push through before transplant so I can do the same now.