Day +132. Sitting in the clinic getting another two units of RBCs. Weekly transfusions have been the name of the game as of late, as are weekly Neupogen shots. The course of treatment so far has remained the same. At my weekly appointments, I play a mean waiting game to get shots and blood. But by now I’m an expert player, knowing to bring my laptop to keep me occupied. We’re currently in the process of identifying and confirming a second donor, another 10/10 HLA-type match. In the event that we’re unable to confirm them, we have a few 9/10 matches who are ready to go. This wouldn’t be the worst case scenario, but it definitely isn’t the most ideal. For now, more waiting.
Apologies for the spare postings. I’ve found that the days blend together and smush into weeks that overlap and compound into months that pass all too quickly. I would be lying if I said I was functioning at 70%. I’d be lying if I said I was even at 50%. I can confidently say I’m running at a solid 35%. But, I suppose that’s to be expected considering I have about less than half the amount of hemoglobin in my body than normal. And so it goes.
The latest piece of news is, as of last week, I’ve started back at work full time!
It’s been super exciting to jump right back into the project I was working on before leaving for the transplant back in February. We’re in the throws of wrapping up a paper and I’m stoked to finally get our work out there.
It has been a bit of a struggle to wake up and be fully ready to go in the mornings, but thankfully caffeine is an amazing stimulant and helps so much with getting my brain up to speed. I have been needing more down time after work though, and I’ve needed to go to sleep earlier. But overall, I’ve really enjoyed getting back to work and reestablishing some sense of normalcy again.
This week, I’m headed out to the Bean (Boston, if you’re unfamiliar with the lingo) to visit some friends and to show Ricky around my old stomping grounds. I’m super excited to be back in the city where I found myself and to see friends I’ve missed dearly. More updates to come from the trip!
4 thoughts on “Day 132: Heigh-ho, heigh-ho, it’s off to work we go!”
CONGRATS on getting back to work, Min! Have fun in Boston and keep posting when you’re able to. Fingers crossed that a second 10/10 donor surfaces.
Can’t wait to have you back in our city!!
Hope you are doing well! I have myelodysplasia and I’m transfusion dependent. Worried about iron overload as well. I’m currently in a drug study (sotatercept) at Johns Hopkins, but we don’t know if I’m responding to the drug yet. I started a podcast that features interviews with people dealing with cancer & other diseases. I would love to interview you for the show if you could work me into your busy schedule. Here’s a link to the podcast on iTunes:
All the best,
Love your blog! I have myelodysplasia and I’m also transfusion dependent. I recently started a drug trial (sotatercept) at Johns Hopkins, but we’re not sure if I’m responding. I would love to have you on my podcast which features inspirational people dealing with cancer & other diseases. Here is a link to the show on iTunes:
All the best,