Dad's cognitive slippage has continued, and he needs pretty constant help. While he has trouble remembering lots of things, he is still pretty certain that he does not need to take instruction from his wife or daughter, so professional assistance is the only thing that works (my own feeble efforts are no better rewarded than Karen's or Mom's, and in any case are too infrequent to do much good). So he will be moving into assisted living soon. Mom will stay in their current apartment, which is right across the "street" (really it's a parking lot). I was happy to find a decent last-minute airfare and squeeze in a quick pre-Holiday visit, complete with a mini-Christmas dinner (glorified finger food). It wouldn't have impressed an outside observer, but our little gathering will rank right up near the top of my Christmas memories.
As for me, I am feeling good, and the new chemo routine seems a bit easier to take than previous rounds, partly because the new proteasome inhibitor (Ninlaro or ixazomib) is delivered orally rather than by injection, and especially because the dexamethasone dose is only 1/4 of the pre-transplant dose. I still go in for weekly blood draws, but am responsible for managing all the meds myself. Everything is on it's own schedule, so it's not quite trivial. Quoting from the Clinical Note:
He will start with Ixazomib 4 mg/week (days 1, 8, 15 every 28
days), lenalidomide 25 mg daily days 1-21 every 28 days, and dexamethasone 20 mg days 1, 8, 15, and
22. Supportive care would include acyclovir 400 bid, aspirin 325 mg daily.
The Ninlaro is something to behold. A 28-day supply consists of 3 capsules, and according to Express Scripts, they pay a little over $12,000 for those (I think this includes the negotiated discount!). Each $4000 cap comes in its own fancy (cardboard) box, although you might hope for a little gold leaf or at least some decent inlay at those prices. Of course, its true value lies in the unobservable things it does, and I don't want to sound ungrateful--I am depending on this stuff to keep me alive--but still.
Rosie is here for the week, and we have somewhat belatedly got our holiday situation together. The tree is a little on the short side. I swear we weren't (much) slower than usual in our tree shopping, but all the usual sources were mysteriously tapped out. I blame my fellow consumers for being over-eager. It's a cute tree, anyway, and Rosie was able to put the angel on top without benefit of a stool or ladder.
2016 has been a strange year in so many ways. I guess I'm ready to take my chances on the next one. What could possibly go wrong?
