Days +174 & +175, Monday & Tuesday

Photo of the Day (Monday): Not only does our lovely neighbor take out our recycling and help feed our kitties when we’re away, but Monday, I found her planting a bush in our front yard! Thanks Breege!
Photo of the Day (Tuesday): Monster, helping me lay down our area rug.

It’s been an up/down start to my week.

Physically I’m doing ok, aside from all the normal things – fatigue, tight/dry skin, a bit of water retention in my feet. At today’s hematology appointment, my Tacrolimus was at a respectable 7.5 and yet, my Creatinine remained elevated at 1.22. It is what it is; hopefully after this week’s 6-month post-transplant NIH visit, I won’t have to take this medication any more.

As for the fatigue, I’ve been much more tired as of late. But I attribute that to some pretty intense workouts at HEW (Hard Exercise Works). Both Monday & Tuesday, I planned on hiking post-workout; both Monday & Tuesday, I ended up not passing Go, not collecting $200, and going directly to sleep for an hour or two. It was nearly impossible to keep my eyes open. And I slept hard, drool on the pillow, kitties purring at my side. It was wonderful and my body sorely needed the rest.

That being said, for as hard as I worked – I also DFL’d the workouts, meaning “Dead Fucking Last” (ed) the workouts. Simply stated, I finished last and by a lot. I kept plugging away at the sets on both days, doing my best and letting my post-transplant body decide the tempo of my movement. But as much as I wanted to up my pace – I just couldn’t. Physically, I don’t have the speed, strength or endurance to make this possible. And it’s humbling.

Yesterday was a combination of running, core, lunges and pushups. Today’s session was more aptly titled “Lucifer” and involved sets of 21-15-9 Thrusters and 21-15-9 Burpees for time. In the past, I have cried while burpee-ing….an exercise that I’m not very fast at, despite practice. There’s something about working really really hard and then having those unhelpful, critical voices creeping into your brain – I did my best to silence that inner-critic, but today she came out with a vengeance. Sort of like Lucifer, if you may. While the rest of the class had finished their final set of 9 Thrusters/Burpees, I was finishing up with my 15 burpees – and I was doing what I could to just get through one fucking burpee at a time. I was the only one moving during minutes 8, 9 and 10 – my fellow classmates all collapsed in their quarantined squares, masks firmly on their sweaty faces. It sucked. And I wanted to cry – out of frustration, and lots of other emotions – but I didn’t, instead focusing on what I could do in that moment. During my last 9 burpees, Coach Joe was cheering me on and counting down with me; it meant a lot.

I have to say – it’s challenging, and extremely humbling; being in great shape one day – backpacking 500-mile trails, finishing first in a workout, climbing mountains in record times, having a body that I could move and push myself in – to struggling in this way. I KNOW regaining my strength will not happen overnight – the first year post-transplant is supposed to be the really sucky one – so yes, I understand. And I’ve battled my way back into top form many many times after illness, pneumonia, bone marrow failure, etc.

But sometimes I wish that inner critic wouldn’t roar so loudly, that I could be kinder to myself and celebrate the fact that I’m here – burpee-ing in the first place – because that truly IS amazing. And that needs to be the focus – on the things I’m doing, rather than the level at which I’m doing them.

Perhaps today’s workout wouldn’t have been as tough, had I played better pool (billiards not swimming) during league Monday night. I lost my match 3-0, all were close, but I still lost. And no, I’ll never be a great pool player and I accept that. But I think the trend of feeling as though I suck (for lack of a better word) – well, it’s just grating on my soul.

As Debbie would say, “sometimes you’re the windshield, sometimes you’re the bug.”

After Tuesday’s workout, I ran a few errands, napped, set up the area rug downstairs, chatted with Breege, met a new neighbor and enjoyed pasta with Andy before 9-Ball league.

During Tuesday league, the winds shifted and I was in more of a “windshield” spot. My 9-Ball Team needed me to play and I actually won a pretty decisive game against another skill level 2. I had fun, and I enjoyed supporting my team – but it was just as nice to feel as though I was actually doing well at something, even though it has absolutely ZERO bearing on who I am as a person, or how I try and live my life. I just won a match, but it helped me to feel better in this moment, in this space in time. I guess there’s a part of me that still craves the ability to do well – I’m not sure if external validation is the word, but maybe it is.

At the end of the day, I will not always feel this way. I’ll continue to grow stronger, become more resilient, gritty, and hopefully less critical of myself. I don’t regret my choice to have a Stem Cell Transplant – it was the right one for me given the seriousness of my GATA2. But I also need to remember that I’m human, with squishy and lovely emotions, who wears her heart on her sleeve and happens to be at a vulnerable spot in her life. And when I get lost in the nitty-gritty details of wins/losses, doing/not doing, fast/slow, and all those arbitrary things – to take a step back and see the big picture.

It’s OK.

I’ve proven that I can do hard things. I’ve survived because I’ve done hard things in the past (and because of modern medicine – thank you Science!). This is no different – except that my hair is extremely short and 99.5% of the blood cells in my body are from my donor. And that at the end of the day, it will be OK. I need to remember that all will be well, regardless of burpees, pool matches or silly workouts named “Lucifer”.

Have a great Wednesday everyone – Andy works during the day, and then we are headed up to the NIH…I’m actually very excited to see Daniele, Erin, Dr. Arnold and the rest of my team for my +6-month check. Most of all, I’m grateful to be here – that I’m surrounded by wonderful people, family & friends, kitties and thanks to my donor’s stem cells, have a second opportunity at life.

  1. You are also continuing to succeed at being refreshingly open and honest about what you are going through. I’m sure your words will be welcome and helpful to another person going through a Stem Cell Transplant. I hope you take credit for that.

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