Relapse. It doesn't top the list of words you want to hear after a grueling year of extended hospital stays, chemo cocktails, radiation, and - the icing on the cake - a stem cell transplant with its accompanying 12 months of isolation.
Alas, today Greg and I found ourselves at what was supposed to be a routine appointment in front two stone-faced dermatologists, who delicately delivered news that Greg's mysterious rash is most likely a recurrence of his blood cancer. Instead of coming right out with it, they used words like "clonal," "atypical presentation" and "confused dermopathologists." After leaving, I asked Greg what he thought of the doctors' delivery. "I was a little surprised," he said, "when they started talking like someone was going to die."
In fact, the medical team was very reassuring about our next moves. I won't lie and say this news doesn't completely suck, but we knew going in the chances of the transplant working stood at about 25 percent - in part because this damn disease is so difficult to treat. While it would have been spectacular to be in the minority of folks fully cured by transplant, we're far from being out of options.
So what now? Essentially, the doctors will take a three-pronged approach. Those who follow the blog know that Greg is using UVB light treatment and steroids to keep his skin calm. The UVB will continue for the next couple weeks as we taper down the steroids. The idea is to kick Greg's new immune system up a notch to fight the bad cells. Greg will then get a donor lymphocyte infusion - that is, a new hit of stem cells from Amanda that, again, might wake up the immune system. Finally, there's a topical cream that when rubbed on a small area will also stimulate the new cells to chase down the CTCL. This will all happen in the next couple of weeks.
Honestly - and it's easy for me to say because it's not my body going through this - compared to everything else Greg has had to endure, this plan doesn't feel like that big a deal. And hopefully it won't be. Even if we're not 100 percent successful at banishing the cancer, we might be able to knock it to an early stage (for 90 percent of people diagnosed with CTCL, it stays pretty indolent and can be managed like a chronic disease, like psoriasis). The common saying is that people don't die because of CTCL but with it.
I, of course, can't help by try to think three steps ahead. If this doesn't work, then what? It's part of my coping strategy but I'm trying to reign it in. We won't know until we get there, and hopefully we won't need to. The point is, even if this plan doesn't work, there are options.
We had a half-mile walk back to the Dana Farber parking garage along Longwood Avenue, passing by Harvard Medical School, fast food joints, honking cars, people laughing on their phones, babies in strollers. It's surreal watching the world carry on as usual around you after getting this kind of news. You feel so far removed, so disconnected - almost like an out-of-body experience, or being underwater in a dream.
Anyhow, do us a favor and don't make a big deal out of this, because that's our plan. We'll know soon whether the new treatments are working, and we're optimistic about what's ahead. This experience has strengthened us to our cores and, though it's exhausting, we've learned to approach the struggles in new ways.