Day +18, Saturday

Photo of the Day: Success! I ate my first Pull & Peel Twizzlers in I’m not sure how many days (but I ordered a giant bag from Amazon and the next day, promptly lost my ability to swallow due to Mucositis). And just to confirm that it worked, I may have consumed a second and/or a third. And fourth for good measure. The pills weren’t far behind and all went down well, with no issues. And a fifth, just to be sure.

Today was a solidly, boring day. Except for the fact that I ate my Pull & Peels and navigated the tricky swallowing of 15 pills of varying shapes and sizes. Ok, I’m not 100% sure if there were 15 pills, but it seemed like a nice round number. 10 is lowballing my effort and 20 just seems slightly unreasonable, but given how much I take at the present moment – maybe no? Still, that’s 15 times when a pill could have gotten lodged in my throat, like it did the other night….but it didn’t. Makes me happy!

Something else that makes me happy – I set another record for a new high White Blood Cell count!

For the record, I’ve NEVER seen a 5-something in my WBC, not even a 4. So whatever the NIH is doing, it is working. I celebrated by chowing down on my sixth Pull & Peel. Don’t judge – my snacks are limited and you would do the same.

Today I spent a lot of time reading and just catching up with people, family, friends – it’s nearly 11 pm here, and my voice is hoarse, but not gone. I’m a bit cold, can feel myself shivering, so I’ve got a lovely warm hat on my head. The Christmas lights over my window have been going full-stop, as has my IV pole, Bart. He regulates the fluids and medications going into my body with a series of little clicks and snuffle sounding noises. This is Bart’s nice singing voice; only when he beeps loudly and annoyingly does he sing the song of his IV Pole People.

Facetime date with my nephew Eli, and sister Karyna (KK!) Eli’s hair is longer than mine, but I’m not jealous.

This morning, Dr Hickstein came in with rounds and checked in to see how I was doing. I felt good – I was up and showered, had listened to the morning edition podcast “Up First” and was sipping my favorite English Breakfast Tea with Andy and Lucy via Zoom. I mentioned that Lucy was in Minnesota and Andy in North Carolina. And then Andy helpfully pointed out that he was the only one of us wearing a Minnesota sweatshirt, to which Dr. Hickstein laughed (his wife is from Minnesota and they spent time in Ely, MN during the shutdown because, well, there’s just not a whole lot up there.)

The goal for the weekend is to see how I respond to an all oral-pill regiment; can I physically swallow my meds, how does my GI system handle any nausea, how does my body do with the MMF (giant horse pill that I swallow 2x/day as 2 pills)? As Saturday is nearly over, I can say that I’ve been comfortable and haven’t noticed anything unusual, and while I understand it’s boring to some – I’m GREAT with keeping boring going as my status quo.

Someone who is not boring? This guy, and the Monster sitting on his lap.

So that’s pretty much it. Pain-wise, my Mucositis is nearly gone – the final push of swallowing all the way is my one last hurdle. I need to be picky with the solid foods I choose – scrambled eggs did not work well yesterday, but today’s Mac & Cheese was great! My BK virus is still lingering, unpleasantly I might add. It feels like a very bad Urinary Tract Infection; I take two pills that help with the symptoms (Peridium, a purple pill and Oxybutin, a blue pill) – but they only lessen the hurt. My body and the beautiful White Blood Cells – Killer Cells as Dr Hickstein called them – will be the ones responsible for eradicating the virus. Same with the warts on my feet. So yes – it’s uncomfortable, but its not forever. And I can live with that.

Eli, in his Circle of Neglect toy at the bottom of the screen, me at the top right. 2 baldies!

  1. Killer cells!! I love them!!! What a beautiful number of them I see on your whiteboard. Karyna and Eli are a nice addition to the blog. Meanwhile, I keep arranging stuff in suitcases and count the days until I see you. Hurray for Friday: Move In Day!

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  2. So happy to see your improvements. Also this blog is good…like next level good and should be used for resident and RN training

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