Finally time for another blog post. Apologies for not being more communicative but some outside forces had to be subdued first.
(Above: Matt getting an echocardiogram earlier this week during this last round in the hospital.)
After a few weeks of speculation, we finally got a roadmap of the transplant process.
Actually we were inundated with information over the past three days: all the explicit details of my pre- and post- transplant treatment, all of the things that may kill me, all of the things that may delay my recovery, all of the ways my life will be different, and all of the dietary restrictions.
It has been sobering and a bit overwhelming. Currently, we've just begun the transplant preparation process. Today I'm getting released from my second in-patient stay following 6 days of chemo.
Unlike my first set of in-patient stays (Coeur D'Alene and then San Diego) I've been healthy for this one: no fevers causing havoc every night and my blood counts have been in the healthy range (as opposed to non-existent). So I've been eating and sleeping fine, and managing the nausea, knowing that we're being released to out-patient freedom in a short time.
(Above: Checking into the hospital on Friday, October 2, 2015, after one last indulgence at 5 Guys -- thanks, Erik and Teresa!)
This stint has been to keep the leukemic cells at bay. My transplant is tentatively scheduled for the beginning of November. The week prior I'll be re-admitted for 6 or 7 days of serious ass kicking chemo. Predictably, I'm not looking forward to it, but it is what it is and I'm trying not to fixate on it.
No point suffering twice.
While I'm undergoing that round of chemo, my sister will be prepping to be my bone marrow donor. I lucked out in that she's a perfect match to be my donor.
Many people aren't so lucky and are forced to rely on unrelated bone marrow donors, a process which has a much higher complication rate. Plus, my sister is much more amenable to my situation and I will be receiving her marrow cells as soon as possible rather than finding a match in the due time of the anonymous donor system.
(Below: Those years that Chris was overseas and missing from all the family photos.)
To prepare as my donor, Carolyn will take some drugs to stimulate her immune system into producing extra white blood cells. After a week or so of this, she'll be planted in a chair for about 8 hours and run through a dialysis-like procedure to harvest most of those cells.
The next day they'll be administered to me as a transfusion, and that's the transplant.
What comes next is the heavy part. To make sure that Carolyn's healthy and functional immune system takes over for my leukemic and compromised system, I'll be on immunosuppressants. I'll also be on a ton of drugs to prevent viral, bacterial, and fungal infections.
The third leg of this balancing act is an auto-immune response called "graft versus host", where Carolyn's stronger immune system could start attacking my body as if I were the foreign body. Although nearly everything is out of my control (beyond diet and hygiene) Dani and I will have to be incredibly diligent about reporting any issues. If this system falls out of balance too far I can become permanently affected. And yet we've been promised that everyone has complications of some severity.
As I said before, it's quite sobering.
For the first month post transplant I'll be in the hospital under constant supervision. Then, assuming things look good, I'll be released as an out-patient but under Dani's eagle-eye supervision and 24/7 care for another 3-6 months. All told, we're looking at a 6-12 month recovery. That's hard to contextualize.
So in the meantime, we're focusing on squeezing every last ounce of joy from our healthy out-patient days, planning our best for the long slog of recovery, and trying not to lose sight of the future. That's what really keeps us going.
We had such a happy life together before this diagnosis and we're determined to recapture our self-empowered freedom.
(Above: We keep photos of our "real life" up in the hospital so that we're constantly reminded of what we're fighting so hard to get back.)
(Above and below: Some of our visits to the beach on non-hospital, good-energy days.)
(Below: Dani went a little overboard with the sunscreen...particularly on the legs.)
Our life can still be open-ended, but it should come with better health.
- Matt