Day +72, Thursday

Photo of the Day: it’s been difficult today, to put my book down

The past few Clinical Center visits have yielded an extremely empty phlebotomy department, with little to no wait time, and I figured today would be similar. So, naturally, when my alarm went off, I hit snooze. Twice.

This was a mistake.

It was 9:25 by the time my blood was drawn, and my OP12 appointment was transferred to OP3. The waiting room was crowded and with only one patient room available, I ended up having half my appointment in the reception area, Daniele and Erin shielding me from my fellow patients. Eventually a room opened and we could discuss lab results (less important) in privacy, as well as do a skin examination (more important).

The numbers looked nearly identical to Monday’s labs: WBC at 4.1, platelets in the 140s, Hemaglobin at 10.6 and absolute neutrophils at 2700. Later, my Creatine came back at .9 (woot!), and my Tacrolimus somewhere in the 6-range. It should have been a tad higher, but for the first time, the previous evening I took only .5 mg, rather than the 1.0 mg as my Team intended. It was my own damn fault, for not swapping my pills as soon as my Team changed the dosage. It’s a good lesson to learn, though – and one that I was able to make up tonight. My skin is doing much better, the rash really diminishing – I’ve been instructed to back down to skin-cream-slathering 2x/day. My response? Happily! And that was pretty much it for the NIH. Nothing major, nothing new. For that, I’m grateful.

After returning to the apartment, I joined my first Peleton class (it’s a fitness app that I figured I would give a try at). Daniele mentioned that doing strength training would be great for me, but Dr Arnold said NOT in the gym at my apartment. And I haven’t got any equipment, so I’m limited. Peleton seemed to have some good work arounds….and sure, I could do yoga or strength or whatever in my own – but it’s not as fun, nor the same. The free 2-month subscription helps and was a good incentive- yep, they got me.

As for my abs, they hurt already. And the class was set to Miley Cyrus, which pretty much means I never want to listen to her again – but hey, it’s a start!

Later it was chatting with Dad, a quick power nap, an excellent meeting with my virtual health support group, dinner and reading. My good friend Kurt introduced me to the Walkie-Talkie feature on my new Apple Watch, and it was fun to joke around with him & discover something totally new! Later, I got to chat with Andy – I miss and love him so. And finally…..I’m 74 pages from the end of Book 3 of the All Souls Trilogy and even though it’s late, I may have to power through tonight to the end. Wish me luck!

  1. This was the first day in a long time we didn’t go hiking. I still don’t know how I feel about that; but change is good sometimes! After seeing Marit do her Peleton Workout, I decided to (maybe??) try one myself. It’s free, healthy and why not?? Oh well, I’ll get back to you about that later. And, today we start to de-trim the tree. It has to be done as we look forward to day 100 (February 4) and getting the OK to leave for Asheville. We are both ready for that Road Trip!😊

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