Sunday, December 11, 2022

Finding A Match

What's in a number?  On Monday, I turned 60 and on Tuesday I found out that my donor team found 65 potential full matches. It was a day late, but I'll take it as a belated birthday present, thank you very much. I'm not sure how :good" 65 is, but it's a lot more than I expected. When I met with Dr. Soiffer two weeks ago, I remember asking about the likelihood of finding a donor match from the registry. The way I remember his answer is this: If we find seven matches, it's a good chance one of those will work out; but if we only find one, then it's not that likely. So I'm thinking 65 is a good number. 

Regardless of whether it's good (i.e. large) 65 is a pretty amazing number. Maybe it shouldn't be that surprising to find 65 donors when the Dana-Farber donor services team looks through more than 100 different registries in 45 countries. But it seems remarkable nonetheless.

What's been more remarkable to me is the number of people who have reached out -- friends, colleagues, cousins, nephews and nieces, and of course, siblings -- to volunteer their stem cells, to let me know they are already part of Be The Match registry, or to join the registry. I know I'm not asking for someone's kidney, but I'm both amazed at and grateful for people's selflessness. Even if I can't use my friends' stem cells, maybe their joining the registry will save someone else's life down the road.  If you are the least bit curious, I'd encourage you to learn more at Be The Match

My brother is also getting HLA typed and there is a one in four chance he will be a match, too. And if he is, then we'll have to determine which is the best option for me. I have to admit that my understanding of the whole HLA typing and matching process is very limited, but it's a question of how many HLA markers (ideally 8-10, I understand) match between me and my prospective donor. (This video from Be the Match is a pretty good explanation.)

All of this means that for now, we seem to be still on target for a late January transplant time frame. We'll know more in a couple weeks. In the meantime, I'm feeling great. I had been making good progress extending my runs and as you may know,  running has always been a good proxy for how I'm feeling. It'  something I've written about many times on this blog over the years, including here (in 2015)  here (way back in 2012!) and here (back in 2014). So that I could "extend" my distance to just shy of 2.5 miles last weekend (even with a sore calf all the way through) was a good sign. 

I'm likely taking a few weeks off running, though, due to the calf injury - not lymphoma related, just an ongoing issue I've had for years. But hoping we'll still get a couple runs in before transplant begins.



Friday, December 2, 2022

A Little Patience

I've been having a hard time finding the motivation to write a new post. And to be honest, I'm not sure why. I think it's because I'm in a bit of limbo right now. We met with Dr. Soiffer's team last Wednesday and we're really just waiting now. 

That seems to be a constant in this topsy turvy world of cancer. Since diagnosis, waiting has been a constant part of the equation. At first, it was the watching and waiting -- monitoring the lymphoma and waiting until it was time to treat it -- and then throughout this whole journey, there's always the waiting for scan results to see if the cancer was growing. And now, we're waiting for a stem cell donor. It's enough to try someone's patience.

Unfortunately, those who know me well would probably agree that patience is not one of my virtues. But that's where we are. 

Waiting to find a donor. Waiting to test a donor. Waiting to get more tests scheduled. (I'm told we'll do a re-staging (i.e, a PET/CT scan) but will not have to do another bone marrow biopsy, which is good.) Waiting to get dates on the calendar. Waiting to get it all started. Waiting to see how I feel when we get it started. Waiting to see how we will cope with the isolation and the infection prevention measures. A lot of waiting. 

Right now, the hope is to get the transplant started by the end of January. But until then, there's not much more to do, but wait.