Day -21, Tuesday

Returning to the Edmond J. Safra Family Lodge, days end, NIH campus

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?

Practice shot. I liked this one, except I’m walking towards the camera not away. And you don’t get the scope of the size of the Lodge. So I guess it’s not at all what I was looking for. But I like the lighting, and my hair. Speaking of which – I’m going to loose it all in a few weeks, so I’ll embrace this while I can. OK, I’m done.

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.

Spit Test: 5 minus of every 30 seconds, spitting into a tube. You’re welcome

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.

Cappuccino chased by a Diet Coke, except not in that order. NIH Clinical Center Atrium.

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!

  1. I love the orbs of light radiating straight to your heart. And you cracked me up with you Clue reference. Hugs and love are with you now…can you feel them? Good night and sweet dreams. ✌❤🙏

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  2. You are amazing. Such a generous idea of you to document and blog for others and for yourself!-I know your wish someone had done the same, anything to provide snipits into what to expect during this journey. So proud of you, mostly for the pickle jar, but for other reasons too 😝😝❤️❤️❤️

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