Day +50, Wednesday

Photo of the Day: Snow! The view this morning, when there were snow flakes and flurries in Bethesda! I LOVE snow! I mean, I grew up in Minnesota and spent half the winter outside, skiing, sledding, ice skating – doing All The Things. It was very peaceful sitting at the kitchen table with the Christmas tree all lit up, sipping hot tea and watching the snowfall.

Thankfully, when I woke up this morning, my nausea seemed to be gone, and I tolerated my breakfast and morning medications just fine. I’m thankful I no longer need to take Bactrim; I’ll be interested to see what my Team wants instead. But that’s for tomorrow.

Mom and I had a very low key morning. There was laundry and dishes that were completed, we chatted with Dad and later, I showered. But with the weather, I wasn’t really in a hurry to leave or go anywhere, especially as the snow tapered off and turned more to a mushy mix of rain, sleet and freezing rain. It made for a solid snowman, though.

I don’t know if I should be freaked out by this snowman or not. The expression is odd. If I wake up tomorrow and he’s suddenly on the ledge right next to our window, well, a)it’ll be the photo of the day and b) we’ll have bigger problems.

After lunch, Mom and I ventured out. Originally, were were supposed to hit up Trader Joe’s and the Post Office yesterday, gifts mailed and food being important. But then there was that whole throwing up thing, and I didn’t really want to venture too far from the bathroom, let alone leave the apartment. Instead, we were brave and left the apartment today, during the storm. Leaving the garage, I heard the drumming of ice rain on my windshield and let out a string of curse words.

Plans changed almost immediately. I didn’t relish standing in line at the Post Office, especially as Mom still needed a box to send gifts to Dad. So we went to the UPS store instead, and it was a wonderful choice. The weather pretty much ensured that no one else was in the store, and we managed to get our items off, no worse for the wear.

On the return from UPS, we took a few back roads and enjoyed the houses and snow. And speed bumps. And no traffic.

We skipped TJ’s all together, instead opting for a “quick” pass through of Harrison Tweet (Harris Teeter, for everyone who doesn’t know that this is how Mom refers to it). My pasta has a long shelf life, butter and cheese are still in the fridge. But poor Mom would do just about anything for a salad of sorts, for fresh vegetables, and thankfully that was remedied. I also got myself my favorite tea – English Breakfast. In the cooler weather, it’s delicious with half-and-half and sugar. I’m generous with both.

Yes, that is a wooden Santa, wearing a rain slicker, behind my creamy tea. I got this a billion years ago for Mom, who collects Santas, somewhere at the North Shore (along Lake Superior in MN). This Santa was the only one of us who was really prepared for the rain. I’ve always loved this guy.

Later, while getting ready for dinner, Andy called. I had just put my pasta noodles in the water to boil, when he mentioned that he had news. Mom and I looked at each other, and collectively looked at my phone. It turns out that someone that Andy was around yesterday, was exposed to a COVID positive person over the weekend, and today began exhibiting symptoms. So, Andy is quarantining and waiting to be tested this week and early next.

I have so many thoughts and emotions about this.

Obviously, I’m concerned about Andy. I love him so much and want him to be OK. This virus scares me, even if Andy shares a different perspective on it, which frustrates the fuck out of me. He always wears masks, though (unless eating), and like most of us, does not have a social life.

I am living, in some ways, in the “bubble” that is the NIH. I am constantly screened before and during my time in the Clinical Center. Every Sunday night, I get a COVID screening phone call from Lisa, my Transplant Research Nurse. Mom can’t even enter the Clinical Center, not even as my caregiver. Before I can even set foot in the building, my temperature is taken, I get asked a series of questions, am given a pink salmon-colored mask to wear at all times, and a color-coded sticker with the date that I affix to my badge, showing that I’ve been screened. Everyone in the Clinical Center wears the same salmon-pink mask.

Mom and I are lucky – we socially distance as much as we can, going out to stores (if we need anything) during the non-busy “working day” hours, and generally live in the apartment. Unless we hike – and then we wear masks whenever we see other people. For the most part, we stay home.

That’s not the case with Andy, and with so many others as well. He doesn’t have the luxury of working from home. He and I were always super careful in Asheville, knowing the potential complications of my GATA2. And Andy’s experience with health growing up, was completely different than mine – his biggest fear is not so much getting COVID, but transmitting it to me and Mom. For the record, I DO fear him getting COVID.

Today he told me that he fears that he’s “cancelled Christmas”, as he was planning on visiting from the 23-28. I said that we should take things “day-by-day” – what if his tests are negative? What then? Neither of us had answers. Tests can, after all, render false results.

The Zoom date that we had with Dad and Andy was downright grim. Mom and I were stony-faced on the couch, processing Andy’s news. Dad was supportive, and Andy tried to make a few jokes and lift the general mood. But that’s tough to do when you’re scared and disappointed and angry and sad all in one newly-stem-cell-transplanted bundle.

I gave myself a time-out to process and then called Andy back. We just don’t have answers, but will err on the side of caution. The New Year’s holiday is a week after Christmas – what if we celebrated together then? Andy said he would mail my gifts. I told him to forget it – we will celebrate at some point, together, and that’s more important to me. Our collective health is the MOST important, hands down.

So that, in a nutshell, is my Day +50. COVID has affected us all, so much this year; no one is immune. It’s frustrating, and angering. Scary. Disappointing. And it’s lonely. For now, we wait. I’m in the Clinical Center tomorrow and will talk with my Team, and then continue to put one foot in front of the other because sometimes, that’s just all you can do.

  1. I have 3 Christmas wishes:
    1. Andy tests negative and
    Remains healthy.
    2. That you and he celebrate
    New Year together.
    3. That you continue toward
    Recovery without pain and
    Are able to return home
    Around day 100.

    Even though our Zoom session was grim I look forward to more happier ones. I miss you and Mom.



  2. I am sorry to hear that your Christmas plans may be altered. I am, however, impressed with your ability to quickly figure out a way to make the best of the situation. This Christmas is going to be pretty strange for most people, and your willingness to look forward to New Year’s is a sign of your strength and resilience. I’ll be hoping Andy’s test is negative.


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