It’s been forever and a day since I dusted off my computer and actually blogged. And in perusing WordPress, I realize that 1) my computer is woefully out of date and 2) so too is my general blogging savvy. Nevertheless, it’s full steam ahead on this one, folks.
Yesterday I had a virtual health meeting with my Transplant Team from the NIH. My bone marrow transplant is now scheduled for the end of October 2020, with an October 5 check-in at the clinical center. Hopefully, fourth time is the charm, as the first two were cancelled due to donor availability and COVID-19 put the brakes on number three. I knocked on wood as did the other eight people attending the meeting.
I feel good about this one, number 4. Really, I do. My anonymous marrow donor was given special permission to donate his cells back in March, and according to Dr. Hickstein, there’s enough cells for two transplants. A bumper crop, if you’re asking me. There’s a lot that went on behind the scenes for this to happen though – two years of bone marrow registry searches and subsequent work by my incredible team, and a lot of waiting and wondering and hoping on my end. Ultimately, the little that I know of my donor is that he’s a 20-something military service member with a lot of time spent overseas, who happens to be a 10/10 match. I think of him and thank him every day for his gift of life.
I was given forewarning that the NIH Clinical Center is looking vastly different these days. On previous visits, friends and loved ones were always allowed in, but with a global pandemic raging, circumstances have changed. Only protocol participants are able to enter, and once I start my pre-transplant Conditioning (basically a combination of chemotherapy and total body irridation that will eliminate my non-functioning bone marrow and make space for my new, donor cells) – once Conditioning begins, I won’t be able to leave the hospital for several weeks. I also won’t be allowed any visitors, except for staff.
So, life as I know it, will be interesting.
I’ve got this WordPress platform to learn. But more than that, I aim to photograph my experience going through a Bone Marrow Transplant – create art from everyday life, so to speak.
I don’t know what to expect or even how this journey will unfold. But just that I’m on it, and I want to create an expressive outlet to share with others. Illness can be incredibly isolating, for both patients and their families/friends/loved ones – it is my hope that through art, photography and writing – we can close that gap just a bit.
Thank you all for your continued love and support.