Day -14, Tuesday

Daily Photo: My view for most of today, somewhere on OP12 (OutPatient 12th Floor). It was a long and somewhat tedious day, sort of similar to this post. I won’t be offended if you stop here.

Today was like I had never left the NIH.

I ran zero dark thirty early and attempted to follow the paved river trail, but my little head lamp was no match for the dark and the mist. And being so close to Halloween (important) and my transplant (more important), I decided to turn around and head back towards downtown Bethesda. Urban running is cool too, right?

The COVID screening line getting into the Clinical Center was the longest yet with 9 patients ahead of me and 2 screeners asking a series of questions, taking temperatures, and giving fresh NIH-level face masks (basically they feel heartier, with thicker material and are pre-bunched at the corners). I appreciate the safety measures and general good will of all involved, because we are all just doing what we can to survive this COVID world.

I was twelve minutes late to my 8 am OBGYN, and if you know me 1) I’m almost always at least 5 minutes late to just about anything 2) I don’t really like being late, its just sort of a thing and 3) When I’m running late – basically always – there’s usually something that delays me further…a string of red lights, lost keys, a very slow person who asks lots of questions. But it is what it is, and the OBGYN Team was cool. I actually really like the head of the department – he’s a witty octogenarian who fires off rapid, thoughtful questions to the residents and interns, but in a way that allows me to be involved. He’s engaging, comes off as curmudgeonly, but I can tell is a softie at heart. His accent reminds me of a mix of Al Pacino and Robert De Niro and basically, if I worked for him I would make sure I was always five (or twelve) minutes early.

By 8:45, I was on OP 12, where I remained for most of the day, first with another COVID Test, then meetings with the Infectious Disease Team and my Transplant Team. Infectious Disease is interesting: the Team wants to know everything I’ve been exposed to, how my body reacted, and what medications were used to treat the infections. Some stuff, ie the sinus infections, pneumonias, etc were really easy. I was treated with X, my body responded Y. Other things – like the CMV, or Cytomegalovirus – is more challenging. Yes, I’ve been exposed to it, but there’s a question about when I had bone marrow failure in 2000/2001 – did that cause my CMV, or did CMV cause my bone marrow to shut down (essentially stop producing new red and white blood cells)? And how was I treated, if at all?

I’ve got the bone marrow reports from my 2001 hematologist back home, and it’s something that my Team has requested. It’s surreal to think that happened 19 years ago; coincidentally, when I was hospitalized then, my Mom introduced me to Harry Potter, which I adored. In preparation for my transplant, I purchased a new Harry Potter box set, and have started devouring Book 1.

It was also interesting learning a little more about my donor. He too has been exposed to CMV and many of the same infectious diseases that I have, except that he’s had a few other exposures as well, likely due to his military service. He’s also blood type O+ whereas I’m A+; eventually I will become O+, but my DNA – hair, fingerprints, etc, will stay the same, except that genetically, I’ll be a match to him. It’s fascinating! I hear these things and even though I don’t know who he is, it’s like I’m slowly gathering pieces of a puzzle to put together on this anonymous person who is saving my life. I’m grateful to him every day.

Just as my ID Team was leaving, my Transplant Team came in and I signed four different consent forms to participate in their Protocol. I’m not sure if today was the day where I went from NIAID (National Institute of Allergy & Infectious Diseases – think Dr. Fauci, one of my heros) to the NCI (National Cancer Institute), but all the paperwork is dated today, for what it’s worth. It was disconcerting going over all the medications, chemotherapies, side effects – mild, moderate and severe – for everything. I know that legally it needs to be done, so I was OK with it. I signed a lot of stuff, and I know that they are going to need to make me really really sick before I get better, I’ll say that.

Then it was down to the Pre-Anesthesia Clinic. Tomorrow morning, I’ve got a Central Line Placement and Bone Marrow Biopsy. A first for the central line, but this will officially be my 8th bone marrow biopsy. I was traumatized as a kid, with biopsies to my sternum, ankle and hip when I was dying of chicken pox in Czechoslovakia. I spent 5 weeks, isolated in the hospital, my doctors not knowing if I had HIV/AIDS (this was 1987) or a case of small pox. But that’s something that I have in common with other GATA2 folks – most of us have had close calls with common illnesses, such as chicken pox. Our bodies just aren’t able to mount a defense against some viruses. Anyway, my 8th biopsy is in the works tomorrow and I’ll spend tomorrow night in the hospital after my anesthesia.

A small price to pay. But seriously, at this point, just knock me out. And usually, the NIH is really good about combining procedures – in the past I’ve had bronchoscopies and lung lavages along with bone marrow biopsies. Tomorrow it’s just the line and biopsy. This also means no more burpees for the foreseeable future, and I’m not too upset about that.

My day ended in OP11, with (nearly) the same view. I had a meeting with my original GATA2 Team – Dr. Holland (who discovered GATA2 Deficiency in 2011), and my main nurse Cindy, who is like a fairy godmother, super woman, kind person, patient advocate, incredible listener all rolled up into one. I think the world of both of them. We went over my 2020 test results and scans – nothing super different from the “normal” GATA2 stuff – except that my lung function improved (thank you HEW!), and at some point I broke or cracked my hip??!!? Yes, I’ve lived an exciting life and have broken my arm, elbow, back/sacrum, etc. But my hip? This was news to me; I HAVE dealt with left hip pain for quite some time, and I’ll think about it on occasion, but it’s never prevented me from being active. Cindy said that she would look more into this. I said I was still planning on running tomorrow before my procedure.

I thanked Dr. H & Cindy again – their research and work saves lives, will save mine – and I told them that, should they see Dr. Fauci, to please tell him thank you. Dr. Holland smiled, turned to me and said to make sure I vote; I replied that I already had. We may have exchanged an elbow bump.

And that was it. Exhausted, I returned to the family lodge. Read, ate a snack. Ate a real dinner, dozed, drank tea, and wrote. And wrote some more – long long post. Congratulations if you’re still here – but this was pretty symbolic of my day. Tomorrow is early, with bloodwork starting at 7 am, and pre-surgery at 8. I’ve got slightly less than an hour to push the fluids and throw together an overnight hospital bag. Thursday, I start my chemo test dose, but that’s a different post, at a different time. Tonight, I’m done.

View from OP12,
Yours Truly. Yes, I was in OP12 most of my day. But I also spent a lot of time waiting and between appointments, which means pretty much that I will take pictures. Hello!

  1. Wow! What a day!!! How incredibly awesome are the people surrounding you on this journey!?! The guy who discovered GATA2? That makes me feel so grateful you are in such knowledgeable hands! ❤️❤️❤️


  2. What a day you have had! I admire your strength and positive attitude. This will carry you through this and you will move on to a more healthy life. I am so sorry Mom and I can’t be with you during this trying time. We are looking forward to December when Mom will be with you and Andy and I will be able to visit you.
    Keep on with the blog. It and you inspire me
    Love❤️ Dad


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