It’s currently Saturday afternoon and I’m sitting in Fat Cats for the APA World Pool Qualifier Tournament (Billiards Not Swimming). Our Tuesday 9-Ball team won its division with some extremely strong performances (in part) by our skill level 4s, all three of whom are now skill level 5s. Don’t worry, yours truly is still – and shall remain – a 2. Anyway, depending on how we do, it could be a very long or painfully short time here – it just depends on how things roll.
Side note: just finished my first match of the day. Apparently I just played against a skill level 3 who had the match of his life on went up on me 19-0. I spent more time on the side watching him make balls with my team than actual time at the table. He ended up soundly winning 18-2 points-wise; I chewed a hole in my tongue trying bite back the tears. To be clear, I was unsuccessful, in spite my best efforts (meaning there is no hole in my tongue). It’s tough being on a stage (of sorts), watched by all. Add in not wanting to let my Team down and a few missed shots, that shame and embarrassment is tough to swallow. At the end of the day, I did what I could. And when it got nearly unbearable, I reminded myself that nothing is worse than going through a Stem Cell Transplant & chemo. It doesn’t take away the sting (or the tears), but that perspective is there. Plus, there’s that whole humility thing, too.
My week was, eh. I had some nice workouts and a great hike, but I was also thirsty and more tired in general, the result of 40+ miles of hiking with Christine. Tuesday’s trip to the grocery store had me purchasing more liquids than solids, and I count the watermelon as both. Wednesday started off rough though, while reading Suleika Jaouad’s excellent memoir Between Two Kingdoms. Her narrative of chemo & bone marrow transplant were so vivid that I actually had flashbacks to my own transplant experience. It wasn’t pleasant and I actually had to put the book down.
My time now, post-transplant feels surreal in some ways, and I don’t even know if surreal is the appropriate word. I know that I’m safe and that my body isn’t attacking the new stem cells, and for the moment, they thankfully aren’t attacking me. I know that I can swallow and am not dealing with mucositis, nor do I have a pump that helps manage pain. I don’t have to worry about my heart stopping if my Hemaglobin drops suddenly, if I’ll ever leave the hospital, or if a fungal infection of my lines will be the thing that kills my chemo compromised body. But in reading Jaouad’s words, all these feelings came flooding back, a torrent I was incapable of stopping. I watched in horror as flashback after painful flashback passed before my eyes, my own personal spool of film unraveling out of control.
So I took a moment, and reminded myself of where I was: safe at home, engrafted, and 7+ months post-transplant. I reminded myself that I’m OK.
Thankfully Thursday was a new day, clean slate an all. A tough workout, time in nature and cheering Andy’s Team during Masters League was enough to distract. Friday was similar, though the early morning phone call from Dr W was less fun. My Epstein-Barr Viral load continues to rise, after having dipped two weeks ago. Ultimately, we decided on a PET scan to look for enlarged lymph nodes.
I keep being reassured by Dr W & the NIH – I don’t have night sweats, unintentional weight loss or any other complications, although I have been more fatigued. But then again, I had a Stem Cell Transplant, so fatigue will be a thing. Again – for so many people telling me not to worry, my EBV is certainly being monitored. I don’t think that’s a bad thing – I would rather be aware than not. But seriously, for everyone telling me to not worry, they are certainly being vigilant.
In more upbeat news: I got my hair trimmed! Not really sure if I can call it a cut, then again, my previous cuts have involved inches/feet of hair, rather than millimeters. When Ashley whipped out the clippers, I giggled because I recognized the sound from when I cut Andy’s hair. But now I’m all trimmed up, the little silky bits removed along with an emerging mullet. SO not going there. We discussed color, me wanting to go blond, but Ashley recommended I wait until my hair is longer and I’m further out from transplant. I also splurged on new shampoo & conditioner, Aveda’s Cherry Root or something being the choice due to its higher moisture content. After this morning, I can confirm that it feels better than my previous NIH-issued shampoo, meaning my scalp feels less tight. And I have fewer flakes, so yahoo!
The rest of me is doing OK. I still use medicated eye drops, plenty of moisturizer after the shower, wear my compression socks to keep the lymphedema in check and a prescription compound for my rosacea. I continue drinking lots of water, tea and doing what I can to keep those kidneys happy and healthy. Emotionally I feel mostly even keel, although flashbacks and fears do sometimes arise (as does the occasional tear when I’m loosing horribly in pool). For the most part, it’s just a matter of putting one foot in front of the other, every single day. And trying to hold myself in a space of compassion for all those other moments.
I hope that wherever you are, all is well and you are having a great weekend!