Day +31, Friday

Photo of the Day: Laughing about something between episodes of The Mandalorian. Hanging out with Mom and Andy, re-watching Season 1 was a blast. Tomorrow, though, I’m insisting on the Season Finale of the Great British Baking Show, because – you know – that’s cool too.

Today came early, with Alexa’s alarm at 6 am. Never thought that I would miss Alexa, but after nearly two months away from sleep sounds like “thunderstorm”, gentle alarms for wake-up, and playing NPR on any station, well – I missed Alexa. Then Andy installed in the apartment and life took one tiny step towards feeling like home.

It was an early morning, though, where I spent about 30 minutes choking down a piece of sourdough bread with my Lemon-Ginger tea, while Andy ate pumpkin pie and we chatted about the upcoming day. The tea was lovely. As was the flavor of the bread (I REALLY missed tart sourdough in the hospital), but the chewing and chewing and chewing just gets tedious. In fact, for a lot of foods, it is more challenging to eat. Thanksgiving dinner was a new record low intake, where I took maybe a bite of ham, barely touched the stuffing, and pushed around the mashed potatoes – all food just seems to turn into sawdust, albeit flavorful sawdust, in my mouth. I’ve been told that chemo will do this; I hope it doesn’t last for too long. Eventually my body will stabilize and that’s all I can hope for.

In the meantime, all I want really is buttered pasta with Parmesan cheese. Honestly? I cannot remember the last time I ate buttered noodles with Parmesan cheese. It’s delicious.

By 7:45, Andy was dropping me off at the NIH, and at 8:00, I had checked myself into the Outpatient Day Hospital. Moving forward, I’ll be headed into the NIH for follow-up appointments every Monday and Thursday for the next few months, as per my Team’s directive to track my progress, manage any symptoms, intervene if something serious occurs, and manage my medications. It’s a big part of why I’ll be living out here in Bethesda with Mom through February or maybe March of 2021.

And I need to make a quick aside here – Andy came into town with an air compressor so he could fill my front right tire. It had a leak somewhere in the valve that I didn’t think was too awful – but sitting in a parking garage for 5-ish weeks, well it turns out that a slow leak, in spite of good tread, can still yield a flat-ish tire. Long story short – Andy pumped up my tire, and then, operating on his sister Debbie’s request – drove to a tire store and had two new tires put on my car! I was floored when I found out what they had done. I love this family so much, and as Andy explained it, “Debbie didn’t want you to worry about having to fill up a leaky tire; you’ve got enough on your plate.”

I was deeply touched, and it meant so much – THANK YOU DEBBIE!

Honestly, this is the kind of thing that I need help with – I’m too stubborn and will find a work-around, or I’ll try and make something last. So to have friends and family recognize that and do something incredibly kind, well, it meant a lot.

Meanwhile – I was in the Outpatient Day Hospital. Labs came back looking good; my WBC was in the 2.somethings, Hemoglobin inched up to 8.5 (from 8.4 two days ago), and the Platelets vaulted to 37 from 25. Other things – I needed a 2-hour infusion of magnesium. Tacrolimus, one of my more important and anti-organ rejection drugs tends to deplete magnesium, so unless I want to have it delivered via IV every few days, I’m going to need to get used to the pill form, and quick. Thankfully, my FaceTime date with my sister and nephew (Hi KK and Eli!) served as a great distraction from the IV.

I also have a UTI (ouch), which is not fun, but now I’m being medicated for it so at least that’s a good thing. And I had stitches removed – a skin biopsy just under my ribs that left a bump. And they changed the dressing on my Central Line, which I still have, and I whimpered a bit from the pain. Hey – what do you expect? The adhesive to this thing has been on my skin for over 6 weeks….my skin is giving me a giant FU. It is NOT happy, and even now – 12 hours later, it still feels tender. Anyway by 1:10 pm I was being disconnected from my IV, and I “cruised” (not really – I walk slow now) down to the Outpatient Pharmacy for my meds. By 1:26 I walked into the P1 Level Patient Parking garage and found Andy waiting for me in his car, the seats warm.

The remainder of the day was very low key. Andy got Mom hooked on The Mandalorian and we all enjoyed Season 1. I had my pasta and later Andy made Mac & Cheese, chased with a bit of pumpkin pie. My stomach is a tad upset – I’m not sure if it’s from the dairy or all of the pills or all of the bubbly water/Kombucha. Likely All of The Above; so I’m not going to overthink that one because that tends to make it worse.

But it’s late, and everyone else is asleep. I’m finishing up this post and am looking forward to reading a bit from Harry Potter (book 4!). If my body behaves, I’ve got the weekend away from the Day Hospital and Clinics, and instead, I get to spend it with two wonderful people that I love very much. And the Great British Baking Show; yes, that too!

A special thank you to Debbie and Andy. You guys are wonderful and I’m thankful to be a part of your family. ❤ ❤

  1. It sounds as if this was an excellent first full day out of the hospital. I hope the weekend continues to be as pleasant and free of major concerns. Greet your mom for me!

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  2. Glad things are progressing and you are surrounded by people you love!! And you can breathe fresh air again and start living in the real world.

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  3. Great to see you, Andy and Mom together. Happy you got new tires. Safety first! Even without turkey you folks are having a true Thanksgiving. Stay well and continue to watch the blood counts go up.

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