The last month has been a whirlwind. Since the initial diagnosis in early April, I’ve been running around like a crazy person, figuring out insurance (done), getting set up with a good Oncologist (done), get staging for the disease (done), and start considering treatment options (done-ish).
In roughly that order:
- Insurance ended up being surprisingly straightforward, after a few days of working on it. Yup, that’s the story I’m sticking to. Short version, if anyone you know badmouths the recent Health Care reform act, use me as an example. Several provisions have already taken effect, and between them it’s the difference between having to pay a few thousand dollars, and several hundred thousand– likely bankrupting myself and my parents. Take that Tea Party.
- One of the better things to come out of the insurance discussions was being referred to University of Maryland’s Medical Center. I’m now working with an Oncologist there who specialized in Lymphoma, and who has been superb in every conversation I’ve had with her. UMMC is a teaching hospital, and it seems like every time I go in I end up helping someone with some kind of research they are working on, be it having another vial of blood drawn or testing out a new machine to see if it works as well as the standard one. This kinda works for me– I keep joking that I’m building up good karma for when I’m begging people to sign consent forms for studies I work on.
- Staging has been rough… Last week I had a PET/CT scan, as well as a few other tests, and they turned up a slightly more progressed form of the disease than we would be hoping. I’m technically Stage IIB, but the distance between the affected areas (groin and lower back) rules out radiation as a possible treatment. Which brings us to…
- Treatment. Chemo. What a lovely word. I’m meeting with my Oncologist next week to go over the last battery of tests, but it looks likely that I will be starting a 12 cycle course of ABVD, a four drug chemotherapy cocktail that is the “gold standard” for Hodgkin’s treatment. Unfortunately, NLPHL is a bit of a different beasty, so while we expect the treatment to work well in the short term, there’s a good chance it will come back in ten years or so. There’s a lot of research being done right now on this sub-type right now though, so the hope and expectation is that treatments will have progressed considerably in that time.
That’s all for now. Knee deep in finals until Tuesday, but I’ll try to start updating this more often after that.
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