Today is the 100-day anniversary of my cord blood transplant. In the transplant business this is an important milestone, so I feel compelled to mark it. My doctor described the transplant journey as a series of hurdles to overcome, an apt metaphor I think. The first hurdle was getting through the pre-transplant regimen, a highly toxic brew that blasted any leukemic cells lurking in my bone marrow, and effectively dismantled my immune system. With zero ability to fight infection, I had to hope my new cells would quickly grow and produce the whites, reds and platelets I desperately needed to survive. It worked. After 12 days on a wire without a net, the new cells engrafted and I was out of serious danger, although still at risk. I'd made it over the first hurdle.
The second hurdle would be living through the next few months without getting an infection, and without my new blood attacking the rest of my body as "foreign." When this happens during the first 100 days, it's called acute graft versus host disease. It's serious, and can take down a body already severely weakened by chemotherapy. I swallowed many pills designed to combat GvHD. But these immuno-supressants also prevented my immune system from developing, which in turn kept the risk of infection at a very high level. I was still on the wire, with a "net" this time, if you can call two baby boys holding a blanket a net.
For 100 days, I balanced risk-aversion with risk-taking. I slowly returned to life before transplant, with certain restrictions, of course. I began to have days where I "forgot" I'd had a transplant, although my pill regimen kept that feeling in check. On Day 89, my doctor told me to begin tapering the immuno-suppressants. He also said I could liberalize my diet, meaning I could have foods that had been black-listed for 3 months. Being an over-achiever (and one very fortunate person), I took my second hurdle 10 days early. And now I have survived 100 days. As my daughter would say, woot!
Now the course becomes more interesting. It's possible I'll develop chronic GvHD, especially as I continue to reduce the meds that keep my new blood from sparring with the rest of me. It could be mild or severe. If it's severe enough, I'll have to take steroids to treat my condition, which in turn will suppress my immune system. The other factor in this strategic balancing act is that I remain in remission. This feat requires a sustained hurdling effort. In fact my feet will barely touch the ground, because relapse could come at any moment. While I can somewhat influence my outcome through hygiene, living a hermit's life, and religiously taking my meds, I have absolutely zero control over the course of my disease. Sigh.
To celebrate this auspicious day, I plan to do things I enjoy: read, knit, cook. I'm not going to dwell on the results of my bone marrow biopsy, which I'll be receiving this week. Oh yeah, and I'll be sure to stay nimble and maintain my equilibrium, both physical and mental. Falling is such a let-down.