Day +51, Thursday

Photo of the Day: Blinded by the sun, driving home from the Clinical Center. Seriously, the glare was the worst I’ve ever had, and it’s forever seared into my brain. On post-snow/sleet/rain/ice sunny days, I’ll consider taking an alternative route.

It’s been a long Thursday, but a good one. I hit snooze twice, and was still early for my blood draw. Actually, labs took less than five minutes; I spent longer in line for coffee. But the Chai Tea Latte (extra hot) was well worth it, and kept me happy all morning.

The Coffee Cart, as I call it.

My appointment went well. As Andy said, “it’s a really good thing if you guys spend more time talking about non-stem cell transplant things than actual medical stuff.” Non-medical conversation topics included: cats, Harry Potter, Anthropologie, food, cute clothes. Medical stuff included: blood counts (WBC 3.7, Hemaglobin 11.2 (!!!!), Platelets 134, ANC 2.2), Bactrim reaction and using Pentamidine instead, refills, Tacrolimus levels (slightly high, so we are adjusting the dose for the next week and retesting), and stopping a medication or two that is non-essential at this point post-transplant. Oh, and my Whack-a-Mole spots: the hydrocortisone is doing its job, but the GvsHD mark at the top of my spine is just pesky.

I feel good about things, overall. It’s a day-by-day process. Marathon, long-haul, and all that jazz. I FEEL decent, no worse for the wear after Tuesday’s throw-up incident. The sun on the drive home nearly blinded me, and my sensitive eyes having just emerged from the parking garage. When I walked through the door, Mom was happy and insisted that I have my picture taken next to the tree.

I agreed because the tree and I match.

I love my sweater. It’s warm and comfy. And also from Anthropologie, a wonderfully comfortable gift from Mom.

The Zoom date with Andy and Dad and Lucy was significantly better than last night’s. I’ve had time to process Andy’s news, about a possible COVID exposure, and not getting together for Christmas. The sadness is still there, of course, but it’s not forever. It’s 2020, and to be fair and honest, many of us are making the same choice this year. Today our Zoom chat was fun, relaxed. We joked and laughed. I drank English Breakfast tea and just felt happy, recapping my appointment, seeing my family and making plans for 2021.

Later I headed to the 9th floor, for a therapy and zoom session. The “common room” was totally empty and before I even sat down, I wet wiped & sanitized the area thoroughly. Light from the setting sun was beautiful, and it was fun thinking about how to set up my shot.

The day ended with buttered pasta (of course), a Christmas Movie (Home Alone) and Pitch Perfect. What can I say? Mashups and singing are cool. So is Christmas. And they both have sequels, so everyone is a winner. Stay safe and good night!

Yes, screaming may have been involved.

  1. Good days are a good thing. In the photo it was difficult to determine which was you and which was the tree. Both are bright and lit up. Our Zoom session was uplifting and fun. It was nice that we could laugh joke and watch Andy caulk baseboards in your condo.
    j hope all continues to go well. Day 100 will be with us before we know it.
    ❤️Dad

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  2. What a great day it was! Always good when Marit visits the NIH and ends up talking about mostly everything except her present state of health! Got a shipment from Crate and Barrel, wonderful ornaments, which we’ll hang this morning. When all is well, ALL IS WELL!!

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