Day +97, Monday

Monday! Today was my last Monday heading into the Clinical Center. Per usual, I hit the snooze, twice, but eventually was up and getting ready. Traffic to the NIH was light, as most opted to stay home due to our winter storm, though with 2-ish inches falling, the roads weren’t bad. I sailed through the Patient/Visitor Gate, the Parking Garage inspection and Phlebotomy. It was a trifecta of festival miracles.

My last time at the Outpatient Day Hospital was largely uneventful, and today it was just Daniele and myself. All counts and numbers were good, except my Tacrolimus level which plummeted to 2.6 (ideal range is 4-10). This was to be expected, though, as last week we stopped Letermovir, an anti-viral drug that helps prevent CMV (cytomegalovirus) infection. However, Letermovir also affects my body’s Tacrolimus level, and as such we need to re-adjust my dosage. No cause for panic – its just a matter of tracking my levels, and this is something that can be done in Asheville.

Later, I followed up with NIH Dermatology. The eczema-like rash on my shoulders is better thanks to Triamcinolone, a medium-grade steroid cream. And the rosacea on my cheeks is also better, which means that doing important things like washing my face and applying moisturizer are no longer painful. The dermatology folks were interested in a light rash on my lower arms, likely exacerbated by an itchy cashmere sweater. Even though its beautiful, I don’t think I ever want to wear cashmere again. The take-away lesson is that if I put something on my body, that even causes a slight bit of discomfort – I need to select something else.

Lesson learned.

The best part of my day was having the opportunity to visit with Dr. Holland, Cindy, Janine and Vicky. When I first came to NIH in 2018, I was accepted into Dr. Holland’s protocol and through that process, it was determined that I needed a Stem-Cell Transplant. Even though I’m working with Dr. Hickstein’s Transplant Team through the NCI (National Cancer Institute) now, whenever I have the opportunity to see my original GATA2 Team, I do. They are just good people who work tirelessly to make the world a better place. They have all changed my life for the better.

My drive back to the apartment was fine and I made a quickie stop at Harrison Tweets (Harris Teeter). I had a hankering for baked tomato/basil fettuccini, what can I say? I had tea, chatted with Mom and later Andy, made yummy food, Zoomed with Dad, Andy & Lucy, and watched reruns of Top Chef. Its cruel: I know the ending and Mom does not. But Mom knows that I know. I also enjoyed the snow, beautiful flakes swirling past our window. It was a solid day – I’m grateful. And it’s less than 100 hours (according to Andy), until I’m home – so that is pretty awesome too.