Talk about interruptions. I certainly didn’t think I would be leaving Washington, DC in such a hurried, unplanned fashion.
Dr. Seibel, my oncologist in DC, had been watching my platelets steadily drop for a couple months. Last week they fell too far, prompting her to recommend I get a bone marrow test. My mom flew in to the land of monuments on Thursday to see the Friday procedure through. We had little reason to think anything major was wrong. I was bruising, but anyone who knows me knows my run-ins with walls, doors, and other obstacles are frequent, making bruises hard to attribute to anything other than plain clumsiness.
Later that afternoon, Dr. Seibel called saying the preliminary pathology results were showing I had something called myelodysplastic syndrome (MDS for easiness’ sake). I think I asked her to pronounce it about four times, then hastily jotted it down on paper as she spelled it. I had never heard of it. Apparently, it’s a blood disorder that causes my bone marrow to make dysfunctional blood cells that don’t mature into healthy cells. Eventually my red and white blood cells will fall too, in addition to my platelets. If it goes untreated, it often turns into acute myelogenous leukemia (AML), which is definitely not good. They have since confirmed that my MDS is a result of the chemotherapy and radiation I received for my successful osteosarcoma treatment when I was 17.
I went into work at Powell Tate later that afternoon, filed for medical leave and said goodbye to some of my already heavily missed coworkers. We rode the Metro back to my apartment and researched flights back to Minnesota. We packed extra heavy and flew home on Saturday. I told you things moved quickly!
My mom, dad and I met with my wonderful former oncologist Dr. Arndt at Mayo Clinic already this past Tuesday morning. She explained that if the diagnosis was confirmed to be MDS (which today it was), they would recommend a bone marrow transplant (BMT). I immediately thought back to my days working at the University of Minnesota’s Academic Health Center, where BMTs often made news for treating diseases that were supposed to be incurable. During a BMT, they first perform 8-14 days of intensive chemotherapy that basically kills my bone marrow cells and immune system to make room for donated healthy bone marrow. The transplant itself is apparently pretty anti-climactic – it’s a lot like a blood transfusion. After I’m healthy enough to leave the hospital, I’d have to live at the Gift of Life Transplant House near the Mayo Clinic for a few months. You can read more about BMT here.
“Do you have a brother or sister?” asked Dr. Arndt. This is important because I need a donor whose bone marrow exactly matches mine. Siblings are a match 1 in 4 times. Parents are a longer shot (Dr. Arndt has only seen two cases in 21 years), but they were tested anyway on Tuesday. I took my brother Jack to be tested today, urging him to think “match.” His respoonse:
“You know how I always make fun of you for not having an athletic bone in your body, hopefully I can give you a shot… my marrow is the shit.”
So, right now we’re waiting, hoping and praying that Jack is a match. We should find out by the end of next week. If he’s not a match, I need to go to the national Be The Match Registry, operated by the National Marrow Donor Program (think the Shaq PSAs). It takes three months on average to find a donor here, so that’s why we’re realistically but ardently hoping Jack’s marrow is as good as he says it is.
Until then, I’m living in New Ulm with my mom and Brad and am already slated to waitress the church sauerkraut dinner on Sunday. Thankfully Jimmy happens to be home from medical school in Chicago on spring break next week. Of course I signed him up to work the sauerkraut dinner too. I’m hoping he’ll wear his lederhosen for the ladies’ sake.
Thanks so much for all your support so far. It really helps.
Oh, and please stick with me on this blog. It’s my first, so I’m still figuring out the basics.
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