I’m really grateful to those of you who have expressed your prayers and support for Beth. This is a bit of a whirlwind time for us – getting a diagnosis that has “leukemia” in it is quite a shock.
We’ve been working hard over the last year and a half or so. I’m a writer at Black Box Corporation, and Beth is a supervisor and med tech at Overlook Green Assisted Living Center. Typically, she works nights, and I work days – we do this so that one of us is always home for our six-year-old. And it’s been a tough road. We barely have time to see each other.
To have this thrown in on top of that really upsets the apple cart.
Janine, a woman from my church, who is a breast cancer survivor, told me last week that, when you’re going through something like this, humor truly is the best medicine. In that spirit, my son John 3.0 has been working overtime. There are, for example, hand sanitizer dispensers all over the place. John will get a handful of clear, invisible hand sanitizer. He’ll bide his time, until he finds an unsuspecting victim, like his brother Nate (or me). He’ll then fake a sneeze into his hand and immediately wipe the sanitizer onto his victim’s arm or hand and say “excuse me”. Ha ha.
The drug regimen
One thing we haven’t yet talked with our doctor about is the fact that “the median survival” rate of patients who have what Bethany has – (IPSS intermediate-2 and high-risk MDS – levels 3 and 4 on the chart) is still less than 24 months. Mitigating that number in our favor is the fact that she is at the very young end of the scale for this disease – most patients with this disease are over 70 – and the fact that we can look forward to the bone marrow transplant, which offers “a complete cure” in about 50% of cases.
Beth specifically has the CMML variety of MDS. What seems to be most amazing is the drug that Beth is going to be given, Vidaza (see also here). While not strictly a “chemotherapy”, in layman’s terms, this drug “affects the genes that differentiate blood cells.”
That is, CMML is a cancer (specifically among the various types of MDS) that inhibits “immature” blood cells, or “blasts” from “growing up” and becoming normal blood cells. In this disease, these “blasts” then seem to hang around in the bone marrow and further to “gum it up,” all of which is a pretty severe degenerative process.
The Vidaza seems to interface directly (and at a genetic level) with the process that prevents “blasts” from becoming normal blood cells. In the process, her own body will be enabled to produce more of its own normal blood cells, and the degenerative process is inhibited, if not outright eliminated. I’ve read stories that this drug alone can cause a “complete remission,” although, as with everything, you have to understand that these are only individual results that don’t take into account the entire context of treatment.
She has already had her first treatment last night, and she says she feels all right with it.