Day +203, Tuesday

I’m tired. It really has been a whirlwind time with my folks – I’m grateful to have had the time with them and was very happy to share with them bits of Asheville and the Western NC mountains that I love. But I’m still tired, and by the end of yesterday that translated into constantly shivering and hangry. It is what it is – but Tuesday was just not my favorite day.

It began with early labs and another weekly visit with Dr. W, my hematologist. On the upside, my white count is coming in beautifully at 4.5, and while the neutrophils are low at 1062, the lymphocytes are a strong 2754 and I actually have monocytes, which pre-transplant, I simply did not. They are holding a steady 558, right in the center of normal. I’ll take it! My red blood cell count is a tad low at 3.24 (range 3.8-5.1), so too is my hemoglobin at 10.9 – which means I have to work harder to get the same amount of oxygen to my muscles as someone whose hemoglobin is normal (range 11.7-15.5). Its okay though, because I’ve never known anything different. And besides, I’m just post-transplant and I expect my body will be sorting itself out for quite some time. And finally, my platelets dropped a bit more, down to 89 (range 140-400); in transplant through, these little buggers are always the last to come around.

My metabolic panel came in even better, with all counts in the “normal” range. Dr. W laughed and said my kidneys were perfectly normal (0.87) and that the bananas were obviously helping my potassium (up to 4.1). As someone who is so accustomed to seeing tiny “L”s and “H”s next to her counts – this was wonderful.

Less happy was a second consecutive positive “high” Epstein Barr Virus (EBV) result. This is the second week in a row that these numbers have returned positive, and were I still on immune-suppressive medications, this could be really really serious. Both my anonymous donor and I were positive for EBV; watching for reactivation in my body has been critical, particularly when I was on Tacrolimus. That being said, I’m no longer on immune suppressive medications and am not taking (and never had to take) oral steroids – Dr. W said that technically my new immune system should be able to handle this infection.

But.

And it’s always the “but” that gets you, especially in medicine. But if I were still on Tacro, if I were taking oral steroids, this could be very serious and dangerous for my body. We went over symptoms of EBV and I quipped yep to night sweats, fatigue, and a sore throat. But these were all things that I’ve had since returning home from my transplant, and especially with the night sweats, something that I dealt with on a regular basis pre-transplant. Dr. W wasn’t able to feel any lymph nodes in my neck or under my arms, and my spleen, liver and other organs seemed OK.

But.

But he still sent a note to my Transplant Team at the NIH. And I sent a text to Daniele, giving her a heads up. Essentially, she agreed with Dr. W, commenting that because I’m off Tacro, my immune system should be able to handle it. She also said that I’m at a low risk for PTLD – or Post-transplant lymphoproliferative disorder. But.

So the plan is to have another week’s worth of results and go from there. If I’m feeling sick, or exhibiting symptoms, we could do a PET scan, a type of imaging test using contrast that reveals how my tissues and organs are functioning, and look for enlarged lymph nodes. That’s still to be determined – so there you go.

I feel like this is not that big of a deal, BUT it could be a big deal – all the while its unfolding and I write. I keep returning to the fact I’m off Tacro, and my new immune system should handle this. But I tend to think of my medical professionals akin to folks who work on planes. If my flight attendant isn’t worried, in spite of turbulence/lightning/wind/EBV, then I’m generally OK. Then again, if my flight attendant turns into a Zombie as with World War Z (the movie), well, I don’t have an answer for that and we’re pretty much all fucked.

After my appointment, I headed to HEW (Hard Exercise Works) for a quick, but painful session. It had been a week since I saw & worked out with my friend Melissa, and Tuesday’s workout involved running, pull-ups and a particularly viscous snatch complex. Mind out of the gutters, please. But I challenged myself, I did it, it was done. Afterwards, Melissa commented on how much stronger and faster I’m getting, and it made me feel good. It will be a while before I’m at physically where I was before my transplant, but the things I do every day – the work I put in at the gym, or the miles of trail I hike or even seemingly mundane stuff like walking up and down stairs, or just living my life – they are helping me improve! I don’t notice it simply because I live this every day – the same as I don’t notice my hair growing…but it is.

Post-workout, I returned home. Mom and Dad were packing, so I showered and did all the skin stuff for my body – rosacea medication for my face, dermatitis cream, and plenty of lotion for dry skin. But then I picked up a comb, and ran it through my hair! This was maybe the third or fourth time I’ve done this, but the first that I conscientiously sought out Andy’s comb! Huzzah! Then it was time with my folks – baking kolacky with Mom, chatting with Dad, and catching up with writing, until later Andy and I took them to the airport. I was sad to see them go and did my best to hold back tears, but failed. I look forward to seeing them later this summer, hopefully on Bainbridge Island WA. It was a wonderful visit, and very emotional to see them both, especially with all that has happened COVID and transplant-wise.

I’m grateful that we are all still here.

We went straight from the airport to Pool League (billiards not swimming), the summer session in Tuesday 9-Ball just starting. Masters (not a game I play) is still operating under spring session, and in general, I think the Blue Ridge APA is trying to catch up to itself after the yearlong COVID-forced shutdown. I still wore a mask, not being fully vaccinated yet, and was happy to see that a few other people did as well. But if I’m honest, I’m not sure when I’ll be comfortable not using a mask.

I think this feeling of fear – fear of getting sick, of illness, of COVID – stems from my recent stem cell transplant, the COVID pandemic, and a lifetime of struggling with poor health. And I’m struggling with what this balance will look like for me. Yes, I have a normal immune system. And yes, I’m off immune suppressive medications. But its challenging to make that sudden U-Turn and adaptive shift in mentality, not just from a COVID standpoint, but from 40 years of history battling one illness after another, random bone marrow failures, fighting for my life against diseases that left others virtually untouched – and never understanding why. Add in a few weeks of positive EBV results, a scratchy throat and general fatigue, and I’m a bit on edge.

So I don’t know what this looks like, moving forward.

What I do know: I have my second COVID vaccine dose on the 27th, and then its 2 weeks after that where I should be OK (per the CDC guidelines) to not wear a mask indoors. But we’ll see.

I feel as though my mentality is akin to getting a giant freight ship unstuck from the Suez Canal.

Thankfully, the EverGiven eventually became unstuck. Don’t know what happened to this little excavator, though. The point is, is that this – my mentality and adaptive mindset over health, masks and general well-being – is, well, Doable. I can make that U-Turn, I can adapt, just as my new immune system is doing with me and I my new stem cells. That’s life – and we all just do our best.

Anyway, pool was pool. Our Team eeked out a narrow 54-46 win over a tough opponent, and 3 out of the 5 matches for the evening were nail biters, won or lost by a single ball. As the person who kept score, I did my best to maintain a steady flow of support and poker face (easy in a mask) – not everyone wants to know their point totals. But it was tough – Andy was playing Masters, so I did my best to hold down the fort with our little 9-Ball Team. It was nice chatting with Megan, Casey and Cha-Cha, but at some point I was just done. I was cold, tired and emotionally finito from everything – the parents, my health, etc. My match had just started by the time Andy came over to score, and through a festivus miracle I won by one ball. I tried to stay focused, make one ball at a time and not think about the rest – some shots fell, others missed horribly, but the opposing team was wonderful with their support, as was mine. Andy’s match was just as close, though the few times he threw his pool cue were not fun; anger like this is jarring for me, uncomfortable and scary to see. I was happy that our friend Robbie was nearby, who knows what to say (and not say) in moments like these. In the end, he lost by one or two balls – I felt badly for him, but didn’t really know what to do, and I said the wrong thing in the car on the way home. OK.

The late night just got later and we didn’t get home until after midnight, at which point I jumped in the shower – my third for the day. I was tired, cold, emotionally spent and done. In the future, I will drive my own car. It wasn’t a pleasant evening at home, and I ended up reading and subsequently falling asleep downstairs on the couch by choice. Tuesday became a very early Wednesday, that I just felt I muscled my way through. I comforted myself with three kolacky and hot tea, which soothed the throat, but sadly not the heart.

I hope that wherever you are, your day is going well. Thank you, always for the love and support.