Day +69, Monday

Photo of the Day: Today, when it got muddy, we just kept going.

Monday morning came way way earlier than it should have. I certainly didn’t help the situation by staying way way up past a reasonable bed time last night (reading); but as I’m living a post Stem Cell Transplant life in the time of COVID, there are not many vices I have. Reading is one of them and wonderful, though my tired eyes and puffy face begged to differ.

That being said, I cruised through the NIH Patient Entry with a wave and a, “Happy New Year Minnesota!” from the security guards at 8:30, and was walking into the P1-garage level lobby by 8:40 for my second screening of the day. Phlebotomy was empty, and I mean EMPTY. I thought there would at least be a few patients, or people – but it was just me. I had enough time to snap a photo before being called back for labs.

Empty. Bueller…?

Post-labs, I picked up an extra hot Chai Tea Latte and headed up to the Outpatient Day Hospital. Time passed quickly as I chatted with Elaine, one of my nurses from my inpatient stay, and was very soon seated in my shared room. (Meaning there was another patient on the opposite end. About half the time I’ve shared a room with another person while in the outpatient clinic). Quickly, I was joined by Daniele and Erin and we started the process of waiting for lab results to filter in.

Thankfully, my creatine level is doing absolutely awesome – it was 0.9 today, meaning it’s not even at the high end of normal…it was just, um….normal. This means I will push more fluids than I’m used to, or even feel like drinking – but its for a good cause, so what can I say. My blood counts were looking solid – no major ups or downs of note. My WBC is hovering around 4, Platelets in the 140s, Hemaglobin at 10.6 and Absolute Neutrophils at 2700. One of the more amazing things, though, is that I have both B cells (quite a few!) and NK (Natural Killer) Cells! Daniele and Erin were surprised at how much these two blood counts shot up over the past weeks:

Overall my body is hanging in there. Whatever is happening with my skin, this rash thingy, it seems to be moving downwards. My arms are bearing the brunt of the rash, but the skin on my legs feels a smidgeon warm and tingly, so I’m wondering if they’ll be hit next. Erin observed that only the areas of my body that had been damaged – I chimed in “sunburn” and recalled guiltily all those times of lifeguarding without sunscreen – seem to be the parts where this rash is present. The plan is to increase my use of Triamcinolone and Hydrocortisone Creams to every 4-6 hours. Also, we’re upping my Tacrolimus dose ever so slightly as today’s results (6.4) were below the 8.0 that my Team wants me at. Hopefully this will help.

Thankfully, I’m not struggling with peeling skin or blisters or anything like that. I would prefer to keep it that way, so I’m game for topical medication application and doing what my Team says. I will say – my face is NOT happy; puffy skin, chipmunk-like cheeks, dry and stretched lips – I’m not feeling like my best self. I gently remind myself that I’ve just had a Stem Cell Transplant and that my body is dealing with A LOT. And so much of this is manifesting itself in the delicate skin of my face and eyes. But still – sometimes I just want to go back to looking and feeling the way I did pre-transplant. Sometimes I miss my long hair, full eyelashes and brows, or how my skin felt before chemo, or maybe it’s just the good times and memories that I miss.

When I think about this, I guess I need to remind myself why I’m here at the NIH in the first place. I was born with a really rare genetic disorder – GATA2 Immunodeficiency – and this Stem Cell Transplant will save my life. Dealing with a bit of skin issues, thinning eyelashes/brows, or puffy eyes, or a greasy face from all the topical medications seems like a very small price to pay at the moment. My hair will grow back, my face will de-puff, and one day in the future, my transplant will not be the biggest thing in my world. This isn’t forever.

With that said….moving on –

It was a brief stop at the NIH patient pharmacy for….more topical creams, before I was headed back to the apartment. With a later therapy session scheduled, I decided to head to Seneca Creek State Park for a quick walk on the trails. Mom decided to join me and we enjoyed our (muddy) adventure.

Mom seemed a tad concerned when I said that we were headed towards the wet lands.
This was before we hit the mud when she was smiling
Ever wonder where I got my love of photography?
Seneca Creek passed under this bridge – there was also no mud
Mom smiling (laughing with relief?) when I announced we would head back to the car. Through the mud. But at least she could get back to her book

Our evening was nice and low key. I applied creams to various rash-y places and made myself dumplings and eggs with ketchup for dinner. Mom ate sushi and read. I drank kombucha and hot tea and more water and continued to read and later had a really nice Zoom date with Andy. And that was pretty much my 69th post transplant day. I really can’t complain – it’s just a matter of keeping one foot in front of the other and moving forward, step by step.

So that’s just what I’ll continue to do.

  1. I’m so sorry about your discomfort from the rash but I’m heartened by your numbers especially the emergence of B cells. You are going through a difficult time but the signs are good that you will emerge with a much stronger immunity than pre transplant. Soon you will be home and step by step your body will return to near normal. Your courage and strength are astounding. You are a treasure and I am so proud to be your dad


  2. So yesterday we trudged through mud and more mud. It made for most interesting hiking. A couple of times I almost stepped out of my shoes. The forests were calm, cool and enchanting. I read both coming and returning – a book about witches!! I am so lucky to have such a wonderful daughter who takes me places I never dreamed I of visiting. Today we’re off to visit another park who’s visited by an extraordinary bird. Can’t wait for that!!!!


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