Eyes on the Prize (more COVID-19)

In the four days since my last post, even more has happened in the world around COVID 19. It's scary, and I find myself (unhappily) thinking more and more about how this potentially impacts me. I don't like having ME be my primary focus. It leaves me with an icky feeling that is a combination of heart racing and knotted stomach.

But I go on, day by day, as we all are.

My blood counts continue to decrease, but I've avoided needing blood products so far (we'll see what Thursday brings). I got a little freaked out when Froedtert called me today to see if I could go to a "local clinic" for my Thursday lab draw instead of the main clinic to minimize exposure to people. Unfortunately, the satellite clinics can't draw from PICC lines and I need my dressing changed, so I have to go to the main site. They told me to wait for results in my car instead of the waiting room. Eek. Scary times.

There is intense need for blood donation all over the world as blood drives have been canceled and people are not showing up for appointments. Apparently a LOT of blood donations are made at High School and college locations--all of which have closed. Please, if you are able, donate blood! Read online about why it's safe, even now. If you're in the midwest, please consider Versiti--all blood donated there stays local. If you donate at the Milwaukee branch, I might even be the recipient of your donation--especially if it's platelets!  Go online and do the pre-registration to minimize the time you wait. 

I was able to speak with the transplant coordinator and learn more about what my next 6 weeks will (hopefully) look like. And I learned more about why my transplant date was moved back a week (so far).

The primary donor they'd initially identified was international. With all the travel restrictions, there was sufficient concern that it might not work out to have cells from an international donor, so they switched to my back-up donor, who is domestic. In addition, normally the recipient (me) would receive a week of intense chemo to prepare for the transplant, and the donor's cells would arrive "fresh." But (again) with the concerns about travel restrictions and all sorts of uncertainties, the plan is now to harvest the donor cells before I start intensive chemo so that they will be cryogenically preserved on site until I am ready for them. Unfortunately this adds another layer of issues, as many people react to the cryogenic preservative. Ugh.

So if all goes as planned (oh, send those vibes!), I have a calendar full of fun stuff.

March 25: Bone marrow biopsy
March 26-April 1: Vidaza (chemo) daily
April 2: Doctor appointment and platelet infusion to prepare for dental work
April 3: Lots of dental work
April 7: Social work evaluation, transplant education, pulmonary function test, EKG and Echocardiogram, and chest and sinus CT Scans
April 13: Labs, psychologist evaluation, transplant doctor appointment, transplant pharmacy consult
April 23 (Day -6): Labs, PICC replacement, admission to BMT unit in hospital, begin chemo (Fludarabine)
April 24-27 (Days -5 to -2): Double chemo (Fludarabine and Busulfan) daily
April 28 (Day -1): Start anti-rejection med (Tacrolimus)
April 29 (Day 0): Receive transplant!!!
April 30, May 2, May 5 & May 10: Anti-rejection med (Methotrexate)
Week of May 17: possible discharge

Whew! LOTS of stuff. And I need to just keep focusing on the end game. I have to keep myself isolated and healthy to be able to make it to transplant, and to be the strongest I can be for transplant. Despite my fears, I have to keep moving forward. Hopefully it'll all work out.