Day +48, Monday

Photo of the Day: (From L-R) Dr. Arnold (pediatric transplant), Daniele (Nurse Practitioner and the main person I see during my outpatient visits), and Erin (my Physician’s Assistant during my inpatient stay). I gushed – yes gushed – over how cute they both looked. And then I realized I skipped saying anything nice about Daniele, about the same time that everyone else in the room came to that same conclusion. I tried to backtrack, but the Foot-In-Mouth moment had already happened. Apparently the NIH can help with my GATA2, but not Foot-In-Mouth.

A new week, another Monday at the Clinical Center. The morning came early, as last night I “sampled” ginger snaps. And then went back to make sure they were OK – they were, I might add, not the best….I’m still searching. But Mom and I watched the holiday version of The Great British Baking Show and we meant to stop at one episode, but then darned Netflix got the next episode going before I could switch off the TV. So we watched a second.

I pulled out of my apartment’s parking garage by 8:15 this morning and managed to hit nearly every green light en route to the Clinical Center and NIH Campus. This also includes the Patient Entrance – despite my left turn green arrow, I was stuck, unable to turn into the gate due to traffic backup. Whoops! In order to enter the NIH campus, one must be screened and bags sent through and X-ray machine. Security checks out your car, while staff inside verity your ID.

Unable to turn left.

Usually this isn’t a big deal, as I have a 1-year “Guest” pass, as requested by my Transplant team. I’ve had this pass for several years, which involves a thorough background check, and sitting for a photo. In the Pre-COVID era, Andy and Mom were granted “Visitor” passes, but since the Clinical Center is pretty much shut down and I’m managing OK on my own, that’s not an issue. But basically this badge allows me to bypass security at the gate.

My appointment, minus the Foot-In-Mouth issue, went well. The skin slight sunburn-like spots on my scalp, neck and back are doing well, so we need to continue our game of Whack-a-Mole with the hydrocortisone cream. It doesn’t itch or anything – I can’t even see it. It makes me thankful to have Mom as my caregiver out here to help. Other stuff…?

My counts are steadily on the upswing. My WBC hit a whopping 3.8, and pre-transplant, this NEVER happened. My hemoglobin was 10.3, Platelets at 137, and ANC a lovely 2.7. Excellent! The bit that needs slight adjusting is my Tacrolimus level, which was 11.2 (the goal is 8-10) and my Magnesium (down to .38 from .44). The Mag level returned before the Tacro, and Daniele just told me that the two have an inverse relationship, and that likely my Tacro was too high. She was right! Pharmacy wants me to switch my dosage to 1.0 mg in the morning and 0.5 mg at night, which is easy enough. I think the key is to just find that sweet spot; my Team would agree, but in much cooler Science-y technical terms.

Otherwise I’m doing well. I’m tired – typical – and sometimes I really miss the foods that I used to eat (sushi, sushi rice, take out, sushi, sashimi, and fresh salads, raspberries, any berries). But my new immune system can’t handle all of those things, especially considering food-borne illness. So I stick to the things that can be, according to my MN hematologist, “cooked, peeled or baked.”

This is why buttered pasta with cheese has suddenly entered my life. Flavor is good, it goes down well, and it’s all of those aforementioned things. Sure, at times I feel as though I’m eating like a 5-year old, but so what? And besides, I can’t for the life of me remember when I have EVER had this many carbs. They are truly delicious.

View from today’s Day Hospital room. Rainy.

The rain continued for most of the afternoon, and it was just clearing as I finished my (very late) lunch of Chicken Orzo soup. The nap I took shortly after was incredible, Harry Potter 5 resting open on my chest, Whiskers by my side. Later, we chatted on Zoom with Dad and wrapped a few gifts. And of course, watched The Great British Baking show, holiday edition; I had a great, relaxing time with Mom, and it was just fun chatting. For a time, I didn’t even think about just having had a Stem Cell Transplant – I was just wrapping gifts, using extra tape, curling ribbon and popping bubble wrap.

Tomorrow marks 7 weeks since my transplant, and it’s hard to believe I’m here, doing what I’m doing (out of the hospital, taking short hikes, getting ready for Christmas, eating buttered pasta with cheese, etc). I feel thankful every day to be here, grateful to my anonymous donor – his was the best gift I could have ever hoped for.

My Stem Cell Transplant Day, or my new birthday!! October 27, 2020! Back when I had (short!) hair!

Have a lovely evening, or great day – depending on where you are, and when you read this…cheers!

  1. Those numbers are impressive, and you must be feeling very positive about the seven week mark. I’m sending best wishes from Minnesota, where we are getting more familiar wintry weather. The temperature is dropping, but no snow yet.

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  2. 7 weeks! Seems like you are making good progress even with small glitches. This progress will continue aided by your positive and most cheerful attitude.
    Thanks for doing the Zoom. It highlighted my day. I so much liked seeing and talking with you and Mom.
    I hope your tummy feels better.
    ❤️Dad

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