A bit of a rough day yesterday

We had a bit of a rough day yesterday. In the morning, we took a drive down to the VA hospital. Even though Beth is being treated through private medical insurance through my company, she needs to “get into the VA system”. We’ve already applied for, and she has been approved, to receive at least some medical coverage.

But the thing we are really looking for – “disability” benefits, are going to take a whole separate process. Which involves Beth actually making an appointment with a primary care physician within the VA system. All I’ll say at this point is that we got that process started.

Then we had an appointment with Dr. Jalil, in association with another round of Vidaza. This is the fifth round of Vidaza, and, while Beth’s disease is controlled and her level of “blasts” down to 5%, we haven’t seen that corresponding elevation of some of her other blood levels.

And so, two weeks ago, Beth needed yet another transfusion; we got a call last week, her white blood cells were at a “critical low” level (at 1.9); platelets were bumping along below 100. Her lymphocyte% and monocyte% are also high.

For the last two cycles, too, Beth has been receiving Vidaza injections instead of intravenously. That’s rough at the point of injection the area becomes bruised, then it swells and the skin peels (like a sunburn). It’s supposed to take less time than the IV, which takes about an hour. Still, because of various inefficiencies, we ended up having to spend about three hours at the doctor’s office yesterday.