Day + 9, Thursday

Photo of the Day: Thursday Clinical Center Concert in the Atrium.

Today remained blissfully boring, thank you very much. There was nothing new with regards to my bladder, tush, or mouth, but still the same pain and discomfort – and then some. I awoke painfully when I….swallowed. With one gulp, I was nearly through the ceiling, my tongue, throat inside-of-my-entire-fucking-mouth-on-fire.

OK – so that’s less boring, but only just.

Mucositis, I’ve been told, is some of the worst pain here. Some folks are unable to eat or swallow and need supplemental nutrition. And I’ll admit – chewing has lost it’s fun and I’m pretty much sticking to liquid calories. Ensure plus, broth with something called “benecalorie” (it’s 300 calories of liquid nothingness that dissolves into just about anything), and the no-longer delicious Mango-Banana smoothie. Yep, that one can no longer be tolerated, as the acid from the mango burns the ulcers on the insides of my mouth.

Aaaand, moving on.

I got to see Dr. Hickstein today and it made me happy. He’s the head on the GATA2 Transplant protocol and just a wonderful person who leads a Team of wonderful people. And his wife is from Minnesota, so I think he’s got great taste. He came into my room for rounds with a bunch of folks from the Team – and there was nothing new to report. He said that I was looking better in person than I sounded on paper, and that made me feel good. He also struggled to not fog up his face shield, so even though he possesses super hero science skills, he’s like the rest of us when it comes to fogging our PPEs. Even he laughed.

Later I watched the live concert from the 3rd floor, the Atrium too crowded for my lack-of immune system (WBC is at 0.03, fyi). It was neat sitting above, people watching and seeing the musicians geek out to their jazz. I felt normal.

The rest of my day passed uneventfully, and that’s how I’m hoping to keep it. I’m tired and can feel myself nodding off, so I’m going to stop fighting it and get some sleep. Harry Potter can wait another day and that’s cool, because tomorrow I’ll be at Day +10, double digits. Mazel and goodnight!

  1. A jazz concert, a meet up with Dr. Hickstein, and Harry Potter left waiting. A boring and interesting day at the same time! And isn’t it just swell to look better in person than on paper!!😊 Enjoy a calm and restful sleep and happy start to double digit days tomorrow ❤️

    Like

  2. It’s good that you could see and hear live music. It would be great if you were playing but classical not jazz is your thing.
    Good to see that you have Minnesota feelings
    I agree with the good Doctor—though you kook good in photos, you look even better in person. You are one beautiful woman. Andy has good taste.
    Let’s continue with painless boring.
    ❤️Dad

    Like

  3. Thanks so much for your candor and letting us know really how you’re doing. It is reassuring that these folks seem to know all the angles of your protocol, so you’re operating in the “known” world. So sorry for the pain! We are thinking of you all the time! Cousin Nancy

    Like

Leave a Reply to Nancy Rockafellar Drahosh Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s