My donor-ette and I had our first little squabble yesterday. My Be The Match coordinators presented her with two possible donation days: April 27 (my docs changed this to choice #1 since my last post) and a backup of May 4. She said she couldn’t donate until May 11 at the earliest. She has a big personal event in this timeframe, and of course we need to respect my donor-ette’s schedule. “That’s just the way unrelated volunteer donations go,” said nurse practitioner Julia.
I know she’s a volunteer donor. And I know this is a huge good deed of her. I’m thankful. Really, really, really I am. But sitting anemic at home, I’m sick to my stomach that this MDS will turn into the way more serious AML. It’s nerve-wracking to wait.
My mom tried to work her social worker magic, but Be The Match has their rules, and for good reason. All my donor-ette knows is that I’m a 24 year-old woman with MDS and the need is urgent. I just wish that “urgent” translated to sooner than a month from now.
But there’s good news:
- I got the results of my bone marrow biopsy and there has been no change since my biopsy in mid-February. I guess this is the news that really matters if I can cloud out the above. Maybe if my MDS is indeed slow-moving, a week of dress season will be good. (I’m very upset that my bubble-boy time will take up almost the entirety of dress season.)
- My outpatient practice chemo will now be on the wedding day of Prince William and Kate Middleton of Bucklebury in Berkshire, meaning I now won’t be in the hospital and instead can get home in time to host my dream midnight tea party.
Also, I’m feeling a lot better since I received two units of red blood cells Wednesday. My hemoglobin had fallen to 7.4, so even walking up the stairs to my bedroom was difficult. But now, with two bags floating around inside me, I’m well enough to go to the University of Minnesota Relay for Life tonight! I was what some would call “overly committed” to Relay in college, having co-chaired it for two years, among several other American Cancer Society activities. Tonight we’re celebrating that we’ve raised more than $1 million since we started the Relay at the U in 2004. In honor of Brea, I’m bringing back this attitude tonight:
It’s nice to have celebrations like these take up my waiting, waiting, waiting...
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