Day -21, Tuesday

The light was really beautiful when I was walking back to the Family Lodge at the end of the day, and my goal was to depict just that – except with me in the picture. I’m still not super comfortable walking around the NIH campus with a camera & tripod; it’s been years since I attempted another project like this and in the interim, photography took a back seat. But there’s no time like the present, right?

Today was good – busy, but good. After a second COVID test – yesterday’s was negative, but they want a second – I met with four of my Transplant Team. They are wonderful people who care passionately about what they do, and I really enjoy spending time with them. Later I had Dental x-rays and a check up to confirm that I don’t have cavities, which could lead to life threatening infections after I start Chemo. My teeth were good, but apparently I don’t produce quite enough saliva.

How do we know this?

Well, my dentist noticed cracks on the sides of my mouth – I always figured my mouth was dry from running or hiking or just being busy, but that may not be the case. The cracks are caused by a fungus brought on by dry mouth – I know, I know, it’s more information than you want, but this project is also for future transplant or GATA2 folks to review. And if there is anything I can do to make them feel less alone with their medical ailments, well I’ll share. Two prescriptions later – one for the lip cracks, and another to help keep my mouth wet, I was set to be on my way.

But then another Dental Team came in and asked if I wanted to participate in their study of how Graft vs Host affects Transplant recipient’s salivary glands. I figured – sure, why not? Again – anything I can do to help the medical professionals understand, diagnose, treat, or cure – I’m in. Plus, they said they would clean my teeth. I love having freshly cleaned teeth, so why not?

Lunch back at the Lodge consisted of Trader Joes, eggs and pickles -the jar was a beast to open, but what jar of pickles isn’t? – followed by a bilateral ultrasound of both legs. With my history of DVT/PE’s, the Team wants to establish what my pre-transplant baseline is and ensure that I don’t have any current clots. The blood thinners I take should help with that, but you never know.

Then it was a liquid snack – not what you’re thinking – and my final appointment for the day, a virtual one with Psychiatry. I appreciate the resources that the NIH has available and from past experience, I understand what being in the hospital for 5 weeks can feel like. It’s one of the (many) reasons I started this project – SO… yeah.

The rest of my evening was low key – and now I find myself in the Family Lodge Library. And for the life of me, I keep wanting to mutter, “Ms Scarlette killed Mr Body in the Library with the Coffee Cup…..” That, and there’s the game of Clue in the corner. Anyways, only one person/family unit is allowed in here at a time and I don’t have to wear a mask, so its a nice reprieve from the clinical center or my private room. Perhaps tomorrow I’ll get a picture when I return. Until then – goodnight!