Day +79, Thursday

Photo of the Day: Today I celebrated opening a jar of pickles on the first try. It was a moment relief & humor at the same time. And success!

Today ended up busy, and I’m exhausted, but grateful.

If you’ve been reading this blog for any amount of time, you already know that I told Alexa to snooze a few times before actually getting out of bed. Yes, I was up late reading last night. And yes, I left the apartment 10 minutes later than I wanted. Traffic was uneventful, zero line for the Parking garage. Phlebotomy was a tad different, with 9 other folks ahead of me. Through some festivals miracle, I was called shortly after sitting down, and my blood was drawn on time (my Tacrolimus is very sensitive, and I need to take my dose exactly 12 hours before a blood draw).

Today I worked with the Phlebotomist who married a Scottish Highlander that, on their first date a zillion years ago, took her to Sugarloaf mountain. Of course I think Outlander and Claire and Jaime, but that’s just me. I’m a romantic at heart and glad that she had her happy ending.

My NIH appointment went well, and today I got to see Dr. Arnold in addition to Daniele and Erin. It’s a fun group to chill in a Clinical Center room with – if that’s your thing – and I enjoy the banter. It makes me think that outside the NIH, my Team would just be a lot of fun to hang out with, like at a game night or something. But it’s COVID. I just had a Stem Cell Transplant. And that seems as though it would violate some medical person/patient boundary. But they are good people, and I’m grateful to them.

Hot tea & waiting for my Team

Counts are good, so unremarkable that we didn’t even discuss CBC (White Count, Hemaglobin, Platelets, etc) and I call that a win. My Kidney function was a smidge high at 1.07, but still on the very upper part of “normal”. I drank so much water yesterday – over 3L, and that fails to include tea or Kombucha. Tacro results didn’t arrive until later in the day, with Erin calling while Mom and I were at Trader Joe’s. I’m at 8.4 – exactly where my Team wants me to be. Because the timing and the dose of this medication is so precise, taking .5 mg versus 1.0 mg the night before a blood test can make a huge difference (as in 2.6 points). I trust science and my Team on this – we haven’t changed my Tacro dose in over two weeks, and prior to that were making tiny adjustments to hone in on the appropriate amount of medication – I’m hoping this is where my body settles.

Otherwise, my body is OK. Skin is much better – you really can’t even see any remnants of rash. My face does feel bumpy though, but that could be the Tacro and transplant. Erin passed me a note with a few good cleansers that other transplant recipients found helpful. Everyone was happy about my hike, and seemed generally pretty good with my progress. I’m still doing the cautiously optimistic thing, but there you go.

Because Monday is Martin Luther King Jr. Day, the Clinical Center is essentially closed. Instead, I’m set to have labs drawn on Tuesday and….that’s it. Erin and Daniele cleared it with the rest of the Team – my next in-person appointment will be Thursday, rather than Tuesday. In their words, “you’re doing really well.” I smiled. It feels like I just reached another milestone, that the NIH just let go of me a little more.

Then I was off to Walter Reed Medical Center to meet with Moh’s Surgery in Dermatology. Base access was no big deal, having already visited Pass & ID earlier in the week. I arrived 10 minutes early and my appointment started exactly on time at 1:30. I was impressed. I like Dr. Smith, we went over a bit of my health history (although the NIH had already sent a big file, including medical photographs of my ear post-biopsy) and talked what Moh’s Surgery involves.My procedure is set for January 27th. Later we discussed backpacking in Alaska and bears. He was cool.

Yes, I’m in there. The fuzzy hat keeps me warm and Maryland flag-ish sweater is wonderful. The office was cold and I had finished my tea.

Once I returned to the apartment, it was a quick break with Mom and then we headed to Trader Joe’s where the TJ Gods must have been smiling down on us; parking was a breeze and the store was nearly empty. Once home, I attempted a run (ahem, shuffle) – for 27 minutes I ran the neighborhood south of Walter Reed, and let me tell you. DRIVING the streets – no biggie, it appears flat. But RUNNING? There were hills, or else the pavement tilted up just for me. Who knows? But it’s done, one more run in the books, and I’m one more day towards being stronger.

Mom topped the evening off with yoga, and I some 20 minute body weight session on Peloton involving 30 burpees. When the word burpee came out, I thought about switching programs, but didn’t. Just so you know – I hate burpees. But I did them all. The remainder of the evening was uneventful – picking up a few things from Harrison Tweet, selecting two new Apple Watch bands for my birthday (thank you Mom & Dad), and watching a movie. Somewhere in there I completed my 30 pushups, and cursed Kurt. But I did them all.

Tomorrow evening (late late), Andy arrives for a long weekend visit! I’m so excited to see him, and I know Mom is too! And I especially need to thank Grace & Keith, family friends of my folks for 50+ years, for the lovely Pecan Rolls – we will all enjoy them for breakfast on Saturday! It was very thoughtful – thank you!

And that’s all, on my end. This post was less photos, more writing – but that’s just the kind of day it was. And I’m happy that, in spite of being at appointments for 2/3 of my day, I still managed a grocery shopping trip, a workout that resembled running/shuffling, strength training and a movie night with Mom. Moving forward into my post-transplant life, I understand that the tempo of my schedule, my life, will pick up. Practicing now for those times makes me grateful and realize how truly fortunate I am.

Congratulations if you’ve made it to the end! The End!

  1. Love, LOVE, Trader Joe’s! Yummy salads and fruit, and salads and fruit. Later we both did some work outs. Me yoga and push ups. Marit a run, Pelathon stuff and push ups. Afterwards we treated ourselves to a movie – the Julia Child one!! We had a great time. And, Andy comes tonight and we’re another day closer to the return to Asheville!!

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