Day +21, Tuesday

Photo of the Day: Today, I broke up with Bart, my IV Pole of 18 days. We were constantly connected; he providing the brains behind all fluid and medication and blood products distribution, monitoring and on the constant lookout for air bubbles. I’ll admit, his beeeeeeppppsss got a bit old. But I can’t fault him for singing the song of his people; Bart – it’s not you, its me. Thanks for being my IV pole, now it’s time for you to make a new patient at the NIH happy and healthy!

This will be a quick post, as I just threw up and am dealing with some diarrhea. If you add that to some of the skin bumps or lacy rash that Dermatology biopsied earlier today, my team is trying to determine if this is Graft Vs Host or something else. The waiting is lonely, but not forever.

In the interim, we changed Mom’s flight: she’s now arriving on Thursday, instead of Wednesday, as it will be much easier to spend a single night alone in the Family Lodge, rather than two. Her access, due to COVID, to the clinical center is very limited, so I’m grateful she’ll get to be here Friday with me.

I got to work with one of my favorite people today – Leora, who does OT and PT here at the NIH. She specializes in lymphedema though, and has helped with my right leg swelling since I’ve been here. I enjoy our conversation and banter – she has an interesting story, but she was also incredibly kind when, two weeks ago, she came into my room for pt and found me in tears in bed – in pain from mu bladder and mouth, not able to swallow or pee without feeling like I was on fire. She just sat down and listened, and then picked up some trashy COVID cleaned magazines from the library, and delivered them to my room. She’s wonderful like that and I look forward to seeing her outpatient, when I can.

Leora, measuring my foot to see how much fluid I’m retaining. It was a long process, but didn’t mind.

OK – headed to bed. Nausea med is working and I’m about to face plant into my laptop and that would NOT bee a way to go. Zinc of th stress, OK – thanks 21 days =, Eshoo!

  1. I’m hoping this latest issue is solved soon and that your departure on Friday goes smoothly. You and your mom will soon be settled in together, and you will start a new phase of this journey.

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  2. Sorry about the nausea and pain. I hope you will feel better on Wednesday. Thank you for rearranging Mom’s flight. It is wonderful that you will be together. Goodbye Bart and hello Zora! Keep up the blogs.
    ❤️Dad

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