Day +44, Thursday

Photo of the Day: Mom. I came home from the Clinical Center to find the apartment completely cleaned – it made my afternoon! And no, it wasn’t bad before – but in a small one bedroom apartment with two people over the holidays, well, it can get a tad cramped. As my “Caregiver”, Mom pretty much does that – takes care of me, takes care of things; but she’s also so much more. A friend, confidant, someone to laugh with (or cry, depending on the situation), a cheerleader, a source of strength, chef, cleaning person, getter of Ben & Jerry’s, mountain climber, etc. And she puts up with my car singing, so that’s even a bonus. I’m very thankful for Mom, for being my Caregiver during my tenure in Bethesda. I’m grateful that she’s here with me.

It’s another late late night, and the marinara sauce in combination with the Magnesium is most definitely NOT agreeing with my GI system. This is my way of saying – it’s going to be a short post.

Thursday was overall a solid day! I was out the door by 8:08, pulling into the Clinical Center ramp by 8:20. I’ve never seen a line of cars, but there’s a first time for everything.

Any time lost in the Parking Garage was made up by a less than 5 minute wait time in Phlebotomy. I barely had my book open (Harry Potter 5), before I was called back for labs. I celebrated with tea, an almond biscotti, water and 9 am meds in the Atrium. I felt very classy.

Shortly after 9, I was checked into OP12, waiting for Daniele. She was again joined by Erin and was caught up on the Great British Baking Show. Naturally, we conversed about that first. Priorities! The appointment overall went well. Labs looked good – WBC was 3.14, Hemaglobin (10.2), Platelets (125), Absolute Neutrophils (1.8), Lymphocytes (520). We also got the results of the chimerism test.

What is a Chimerism Test? Glad you asked.

To quote the googles, it’s basically a blood test that involves identifying the genetic profiles of the donor and of the recipient (in a stem cell transplant) and then evaluating the extent of mixture in the recipient’s blood or bone marrow. There are two different pathways that Stem Cells can travel, before becoming various blood cells: Myeloid Cells or Lymphoid Cells. For my Myeloid Cells, 100% of the cells in my blood were genetic matches for my donor. In the case of my Lymphoid Cells, 92% were my donor, and the other 8% are my original cells that weren’t destroyed in the Chemo. The results are neither good, nor bad, rather a data point by which my Team can track my progress.

I think it’s fascinating!

Anyway – aside from bloodwork, the only other issue may be a small development of Graft vs Host on my skin. There are a few small pockets of what appear to be sunburnt skin, one on my bald head (where I can’t see, naturally), and on my upper back and shoulders. I’m supposed to apply hydrocortisone cream and watch it. It will go away, and then pop up somewhere else on my body, this little patch of slightly red, sunburnt skin. So then, I’m supposed to treat it in its new location and continue the same process.

So basically, I’m playing Whack-a-Mole with my skin and potential GvsHD.

Thankfully my Team laughed when I said that, Mom, Dad, Lucy and Andy did later on Zoom as well. Pretty soon the joke will get old – is it terrible that I still think it’s funny, and I was the one who said it? Oh well. But that was pretty much it from the Clinical Center. I passed the time to get my prescription filled by listening to the US Air Force String Quartet play holiday music in the Atrium, which was lovely. Once my number was called, it was a quick trip to the pharmacy, and then home!

This afternoon, Mom and I headed out for 2 hours, just to check out a few stores we felt comfortable in. My first choice was Anthropologie, and I enjoyed widow shopping and then shopping shopping. Trying on clothes was fun, and it was just neat to be in a store – although super far away from anyone else. I loved the staircase.

And I pretty much found the closest thing to looking like a Benedictine Monk that I could. Except it’s a tad short. And I don’t have the weird hairline.

Gotta love a good Anthropologie dressing room!

Later Mom and I walked back to the car, past this little courtyard – it was beautiful.

Eventually, we made it home and were able to relax a bit. Zoom brought all of us back, and it was really nice seeing Dad, Lucy and Andy. Post Zoom, it was a movie, meds and dinner. Plain pasta and cheese work great. The marinara sauce – eh. Hopefully better luck next time.

And that is all that I’ve got! Thanks for reading all the way to the end – Bravo!

  1. Believe me, when you’re a 73 something mom (Zora and I are) and you clean someone’s house its a major major gift!!! Love the Whack a Mole analogy and love your news….you are getting better and better and daily life is taking over in spades….keep those cells coming…its so refreshing to know that American biomedicine is continuing in all its excellence in spite of the toxic politics in our air everywhere….you’ve always been an inspiration on so many levels….

    Liked by 1 person

  2. Listen to Nancy!! She and I share the same feelings about house cleaning!! Nevertheless, it was necessary and so I bit the bullet and got on with it. Surprisingly, cleaning up, gave me a sense of pleasure! Hopefully this will last until I return to St. Paul😊

    Liked by 1 person

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