Happy Wednesday everyone.
I’m at Dana Farber all day today getting my rituxan infusion. As you’ll recall, this is part of that anti-GVHD study I’m participating in. It’s completely pain-free once you get past the fact that my veins have so much scar tissue on them that getting an IV in requires the services of two nurses and one “closer,” the Papi who tags in and gets it done.
So here I am, about 100 days till my re-birthday, my one year anniversary. It's nice to be on the other side of the 100 days, but it's also more nerve-racking. They've been tapering me off my immunosuppressant meds for the past 6 months. Now I have three left to go, which on the one hand feels great but on the other feels scary as all hell. If any GVH scary stuff is going to happen, it will happen from now until June, so as much as people say, "You must be so excited!" I honestly just can't get there mentally from here with the vigilance against GVH ongoing. I know people are happy and relieved for me, and I am too. But there's just too much that can still go wrong for me to be throwing confetti just yet. All I'm focusing on is staying healthy *today.* Because I can't control GVH, I can't control infections really. All I can do is try to keep thinking positively but also realistically, recognizing that 75% of transplant recipients get some kind of GVH, so the odds of me getting something are really rather quite large especially as the decreasing immunosuppressives are allowing my new white cells to ramp up. (Minus the B-cells I'm killing today thanks to the rituxan!) If there is one thing I've learned over the past 270-something days is that every day is another day, meaning that even if yesterday was awesome, today could be a disaster and vice-versa. So I don't get too worked up if I look terrible one day and then pretty healthy the next. If I get too excited about looking "good" one day I have to also get depressed if my facial skin has a hivey freakout the next day, so I choose to just not care one way or the other. So telling me how good I look doesn't actually make me feel better, to be honest (although you can deliver them all you want this summer!). It just tells me you are assessing my appearance on a daily basis, which I have trained myself not to do for reasons of mental health. I am focusing on just feeling what I feel like and looking what I look like without passing any judgment on it, good or bad.
It's a quality I'd like to bring to my life beyond this transplant; one in which I am kinder to myself, more forgiving, and less concerned with what other people think. This disease and this transplant have taken a lot of things from me, and no amount of "I'm better for this experience" should honestly obscure that fact. But I've also gained a great deal, most of it to do with gratitude and kindness, both towards others and toward myself. Am I grateful for the experience? I sure hope not or else I'd be a masochist. But am I a better person because of this? I sure hope so or else the past 270-something days have been a complete waste of time, signifying nothing.