At first it was a struggle just to learn what was wrong. Last Monday, after about three weeks and two hospital stays, we finally learned what the diagnosis was going to be. (And two separate biopsies have confirmed this).
The other night, Beth got a call from someone in a support group sponsored by the Leukemia society, from a woman who had undergone this procedure probably about eight years ago. She is experiencing some ongoing “graft-vs-host” symptoms, and so Beth asked me to look them up.
In my Googling, the site marrow.org kept coming up: with an excellent overview of the procedure; with an excellent overview of the follow-up treatment; and, in a dimension that I’d thought about but which really only hit me now for the first time: the financial aspects of it.
As it turns out, this Vidaza treatment and even the period of intense chemo and radiation known as “conditioning” are only the tip of the iceberg with respect to this entire process. The real “marrow” of the thing, so to speak, occurs post-transplant.
Up to a point, you don’t even know the right questions to ask. You’re just trying to find out, “what’s the next thing we have to do, we want to get it right.” Yesterday I had my first glimpse of what might be termed “the long view,” and I can see now that it’s just going to take a while to get my head around the process.
Here are just some of the steps:
- The search for a donor
- A full health-risk assessment
- “The preparative regimen” or “conditioning”
- The transplant itself
- Days 1-30: waiting for engraftment: will the transplant even “take”?
- Days 30-100: high-risk monitoring
Some time during days 30-100, you “will probably” get to go home from the hospital, but still there, will likely be almost daily outpatient follow-up. In the “long term survivorship” document, it is said, “by one year after transplant, many transplant survivors are able to take part in their usual activities, such as work or school.”
And none of this is to talk about the financial considerations that go along with this whole process.
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