Today marked another major milestone for me. With Andy’s return to Asheville, the next time I see him will be at home, after Day +100, when Mom & I leave the NIH and Bethesda. Don’t worry, it won’t be forever: I’ll return at the end of April for my 6-month post-transplant check. In the back of my mind, though, I’ve been awaiting this moment – it’s just one more milepost on my transplant journey.
Next time I’m with Andy, I’ll be home. And that’s a wonderful feeling.
After Andy left, the day was low key. I read and napped, checked in with my transplant nurse Lisa for our weekly COVID screening, and later Mom and I watched a movie. Tomorrow I’ve only got labs and with my car parked in the NIH garage for the weekend, I’ll enjoy an early walk to the Clinical Center. In the middle part of the day, I’m headed with Mom for a wig fitting. Indeed, those are not words I ever thought I would say, but there you go…that’s life.
And maybe after donating my hair way back in October, the wig gods will smile down at me. Who knows?
I’m feeling OK. I can’t complain about big stuff – important things like organs not working – but I’ve noticed it’s a series of little things. Over time, they can just wear me down. Generally I try and keep this in perspective, but once in a while I just want to say, enough! Between my face acne and bumps, super dry skin, BK infection that feels like a UTI, it’s no fun. Add in super dry nasal cavities. And some clothing items that feel super uncomfortable to my sensitive skin. And a GI system that is OK one day, but the next I find myself breaking wind with great caution.
It’s nothing and everything all at the same time. I tell myself that it’s not forever, and try and focus on mindfulness and gratitude, not dwelling, and taking things as they are in the present. Sometimes this is easier said than done; I suspect this true for us all.
On that note, it’s time for bed. But first, my 30-push-ups. Can’t forget those! Goodnight All!