Day +77, Tuesday

Tonight I ate dinner in my room, sitting on the floor, back against the bed. A self-imposed time-out, if you may. I ordered Alexa around, played a few songs, and sulked. There were also tears – not really sad tears, more like just a few frustrated tears.

This post-transplant existence near the NIH during a global pandemic isn’t easy. I do my best to stay upbeat and focus on the positives, not dwell on the negative. Racing Ironman taught me how to be relentlessly positive while taking things step-by-step. I do struggle with transplant related fear – it’s there, running, a constant current under the surface of my psyche. I’ll acknowledge it and do my best to let it go, to move on. Mostly, I’m successful. And finally, there are moments when I’m just angry – passing someone without a mask, a lost pair of sunglasses that could have been helpful to my sensitive eyes, being warned one too many times about potentially horrible traffic, getting a lot of “no” from my AVL hematologist’s office regarding Pentamadine treatments, constantly being asked what excursions I’ve got planned next and finally, a significant other in a whiney mood- his words, not mine.

These all happened today. And I was over it.

There are times I just want to shout, “Dude, I JUST HAD A STEM CELL TRANSPLANT. I’m the one whose body is recovering, I’m the one who was sick. JUST STOP.”

But then I feel guilty, as though it’s not OK to think/feel these things. This is ridiculous because of course it’s okay to feel and think the way I do, even with multiple emotions (angry, frustrated and grateful, for example). And it’s true: I did just have a Stem Cell Transplant and my body is healing.

I recognize that I’m extremely fortunate; post-transplant, my body is doing well (knock on wood). It’s wonderful to be able to get away from Bethesda, to hike, and travel and see new places, learning more about Maryland’s history, all while gaining strength and flexing my photographic eye.

Generally, I don’t mind being a cheerleader for Andy on the few occasions he’s upset; it is TOUGH having a loved one far far away. I understand that because of my own history as a former military spouse. And, when Dad warns of dire traffic or weather, I’m good about keeping it in perspective. It’s just what Dad does. As for the missing sunglasses – Mom found the ones that I lent her, which was great. It’s a big adjustment to live with your parent/child after 22 years of being away, especially in a small space during a global pandemic. I’m thankful she’s here, and am grateful for the time we spend together – but I’m also looking forward to being in my own home, in my own space.

So that’s where I’m at.

So….I pulled up my Big Girl pants, put in my nearly noise cancelling ear buds, stopped bossing Alexa around, and listened to Mahler’s 1st Symphony. Life isn’t all bad. And tomorrow is a new day.

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Physically, I’m feeling OK. I never want to do another pushup or lunge, but that didn’t stop my nearly 5-mile walk with Mom. We visited Antietam National Battlefield, near Sharpsburg, MD and toured the area. Later, I met virtually with Jennifer, my NIH social worker, and enjoyed a 60-minute yoga session. There were some poses that I could do, others that left me hopping oddly on one foot, and two that I didn’t even bother attempting. I didn’t know people could bend their bodies in that manner; I held tree pose and watched in alarm. Later, it was completing my 30 pushups (does doing it from your hips even count??), eating cheesy pasta, and photo proofing in my room. Now, Mom is listening to Neil Diamond in the other room (still). I may have to insist on quiet hours at some point – but not tonight.

It’s been a day, but it’s almost done. For that, I’m thankful.

Below are a few photos from today’s exploration of Antietam National Battlefield.