It was a long weekend of pool tournaments, followed by normal Monday & Tuesday APA League play. I’m beat, a combination of antibiotics and sitting for 40 hours in a pool hall (but the best pool hall – Fat Cats!) with little movement. Thank goodness for DayQuil, Kleenex, hot tea and chapstick; I needed them all for the marathon weekend we had.
On the bright side, I’m feeling much better, my antibiotics finally kicking in part-way through Saturday. Just as quickly as I felt my nose fill up the previous Tuesday night, I felt it draining down the back of my throat and clear Saturday afternoon. Yes, it was gross, but trust me, after a Stem Cell Transplant, sinus infection drainage really doesn’t seem that bad.
In short, last weekend our wildcard 8-Ball Team managed to make it through two rounds, after two solid Team wins on Saturday. That evening, Andy and I had everyone over and we kicked back with burgers, brats, beer and good times. It was surreal to have so many people (non-family) at our place, and in a really wonderful turn of events, I didn’t even think about my transplant. I was just someone having friends over, and it was great. While the boys cooked, I got started on lemon bars and we all laughed at the cheesy that’s what she said jokes. It was fun to break the tension as a Team, and as friends and just spend time together, in this new post-COVID world we are living.
Our Team played in the Semi-Finals Sunday afternoon, and I made the call to cancel my PET scan. Yes, my EBV numbers have been high and yes, I’m slightly concerned about post-transplant lymphoproliferative disorder (PTLD), a rare but potentially life-threatening condition. The ID doc at the NIH said to not bother with the scan, though, and that my new immune system would eventually deal with the elevated EBV. But my AVL hematologist still super vigilant and would rather that we rule out any potential PTLD, and being a naturally more fearful/glass-half-empty person myself, I don’t mind another scan. So scan it is.
After we reschedule it, of course.
Anyway, we lost to the eventual tournament winners – they played great games and were very strong overall. I wish them all good luck at the World APA Championships in Las Vegas!
Sunday night was more about recovery for Andy and myself, returning late from Fat Cats. We kicked back on the couch, he on his phone and me watching the documentary “Mile, Mile & a Half” about the John Muir Trail, an epic 211-mile trail in the Sierra Nevadas of California. I was fortunate to hike it back in 2018, and I’m devising a plan to re-hike it in the future. Unfortunately, the documentary only made me want to pursue an evasive 2021 permit; however, I’ve already got plans in Yosemite with Christine and now in the Pacific NW….I don’t have time for the JMT in 2021.
Not now, but someday. Someday.
(I SAY that, and yet, there’s still a very stubborn part of me that would love to complete this thru hike in 2021, a testament to surviving trasnplant and COVID and all those tricky life things. To complete it in honor of living and moving forward.)
Monday and Tuesday both served as recovery days for me. This sinus infection has wiped me out, and I’ve felt an uptick in fatigue. I keep meaning to go for a walk, a hike, ANYTHING outside of pool, but I’m exhausted and err on the cautious side. I think that 7+ months post-transplant, that’s understandable and OK. I recognize that my body has been through a lot and that in reality, I don’t need to make it do anything. I just need to stay healthy, to the best of my ability, and recover from my sinus infection. It’s OK if I don’t go for a hike or a short run.
I think that’s what I was struggling with today, Tuesday. I felt badly about not exercising or moving my body more; instead, I spent a lot of hours in a pool hall. It’s not normally something I would choose to do, though I was there as part of a team and wanted to be supportive. But I keep returning to the fact that I feel guilty in some way, for betraying my body by not going for a walk/hike and instead playing pool, a game that I feel “eh” about.
Of course, I roll my eyes at that. First, there are only 24 hours in a day. Second, I was committed to playing in a tournament that was decided in March 2020, right before the pandemic hit the US. Third – in a previous life, the old me would have gotten up at 4 am and run 10 miles, or gone for a really really long hike very very early (meaning, I would have hiked in the dark with a headlamp for most of my trekk). And when I think about it now, that just doesn’t sound very fun. Fourth, if I was really feeling badly, I know I could opt out.
As a post-transplant person who also happened to have a fairly successful athletic life (meaning I’ve won half marathons and triathlons, and finished 2nd at the elite US rowing national championships in the light single a zillion years ago, was aiming for the Olympics, yadda yaddda yadda) – letting go of this “training/recovering” mentality has been tough. It’s actually part of what’s kept me alive; having a strong body, through so many health scares and pneumonias and bone marrow failures. Since even before my transplant, I was doing all that I could to strengthen my body and be the best version of myself that I could; I’m incredibly lucky that I could do this. And during my hospital stay, it was common to find me walking laps – with my IV pole, Bart – around the 7th floor oval, which I think was just as important mentally/emotionally as it was physically for me. After leaving the hospital, Mom and I would go on long walks and trips, exploring Maryland and the surrounding areas; since returning home, I’ve re-joined my gym, HEW (love you guys!), and have found peace and purpose on the many wonderful area trails.
I think I’m finding it hard to switch the mentality of PREPARING for my transplant vs RECOVERING from it.
I need to be better at remembering that my body is different from where it was before my transplant, and while I’m doing really really well, there are still many post-transplant complications that can occur. So, long story short: on the days when I don’t exercise or work out, it’s OK. On the days where I play in a pool tournament all day, it’s OK. On the days where I’ve got a sinus infection and need to sleep more, it’s OK. And on the days that I feel like moving my body or not moving my body – great. But training and regimented exercise is not necessary for where I am at right now.
I think this is a To-Be-Continued conversation; the balance between who I was pre-transplant and who I am now, 7+ months post-transplant, and what’s best for me and my body.
Speaking of which… physically I’m doing OK. I’m tired, very tired – a combination antibiotics, recovering from my sinus infection, and long weekend of pool. But my white count is up to 4.9, my hemoglobin is happy at 12.3 and my lymphocytes are rocking it at 2925. My neutrophils are a tad low at 1465, as are my platelets at 106, but overall, my counts are much higher than they were pre-transplant, and that gives me hope.
I had a great appointment with Dr. W today and after, it was just interesting to chat non-transplant stuff with him. He said that my skin was looking good, my lungs sounded strong, and that he couldn’t detect any enlarged lymph nodes – so yeah! He was also really happy for my July backpacking trip to Yosemite; yes, it will require some logistical planning, but we went over various West-Coast based transplant centers, should I suddenly fall ill. My docs at the NIH gave me their blessings, as long as I wasn’t more than a day away from my car (a) which is why Christine and I have the circuitous route of Yosemite planned and b) why the JMT isn’t a good idea…). But Dr. W was at Standford at one point, so it was wonderful to chat California with him. Plus, he loves the Seattle area, and the Pacific NW in general, and seemed just as excited for my trip as I am. Post appointment, I checked out with Tessa in scheduling, who is just awesome: not only is she super kind and supportive, but she encourages me to take two or three pieces of candy every time. It was Snickers and a mini-PB-cup for me today!
So now it’s very late, onto early Wednesday. Today – Wednesday – I’m hoping to get my PET scan re-scheduled, along with another appointment or two. I’m also eyeing a few hikes, but only if the non-thunderstorm summer weather holds. The Craggy Gardens are a short 45 min drive up the Blue Ridge Parkway towards Grandfather Mountain, and there happen to be 2 peaks on my SB6K (South By 6000) List in the region; it would be a long 10 or 11-miles, but with a good nights’ sleep under my belt, anything is possible!
Thank you for reading and I hope that you have a fantastic day! Cheers and Mazel!