Monday, June 16, 2008

Myelodyspastic Syndrome

Yo, a couple of you have heard already, but I have some kinda freaky news to let you all know about. Last Friday they confirmed I have a weird blood disorder called Myelodysplastic Syndrome, or MDS. Basically my bone marrow is not functioning properly and it's causing all my blood counts (red blood cells, white blood cells, platelets) to be really low. They ruled out leukemia, but there are other problems that can cause this. It’s serious enough that I may need a bone marrow transplant in as little as 4 weeks. Yeah. Crazy. The disease is more common among older people so I have a pretty good chance of beating this thing with the transplant (apparently it’s the only known cure), but recovery could take 3 weeks in the hospital and maybe 4 months additional recovery if all goes well.

The weird thing is that I feel totally fine. It all kind of started out when I had some dental work in January, and my dentist was complaining that she was having a hard time getting the bleeding to stop around my gums, and suggested I see my doctor to see if I had anemia or something. I didn't think too much of it, but then a couple of months later I came down with a really nasty ear infection totally out of the blue. It was super painful, and the walk-in clinic where I got my ear drops said it was the worst ear infection she'd ever seen. I was zonked for like 2 days and was barely able to eat any food. So after that kind of cleared up, I decided to pick a primary care physician that I liked and scheduled an appointment. On the day of my physical, we got a blood draw and he said I was in great physical shape, and that I was a very healthy guy. Woohoo!

Then, I get a call from him the next day: "Hey Steve, we just got the results of your lab work and I need to see you, like, today." Uh oh. He said we could probably wait until tomorrow and I figured ok fine, I'll see you tomorrow morning. I figured it was some cholesterol issue or something. Then he called back again an hour later and said he really needed to talk to me that day, and that he doesn't usually prefer talking about this kind of stuff on the phone, but it was important enough. I was like "jesus, what's going on?". That's when he said he was referring me to an oncologist (cancer doctor) and that he had already scheduled me for an appointment that day. So I freaked out a little bit, called Johanna, went and ate some pizza at Pagliaccia and cried for a little bit and tried to take it all in, then we went over to the oncologist and spent the rest of the day there running tests. They did a bone marrow biopsy on me that evening, which is where they take a thin tube and grind it in to your hip bone, then run a syringe into that to extract marrow from your bone. They need the bone marrow to be able to run certain kinds of tests, since that's where your premature blood stem cells live. I sort of knew what to expect and was sedated, so it wasn't too bad, but that sure was a hell of a first day.

Anyway, I dunno how long I’ve had it or what the hell could have caused it or what would have happened if I hadn’t gone in, but it’s pretty freaky.

More info about MDS here:

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