I woke up at five this morning feeling miserable--struggling to breathe and just feeling not right in some undefinable way. I told Marty that I'd been reading in hospice literature how people could choose to feel more sedated or less sedated depending on what else they were willing to tolerate, and that this definitely seemed like a time to be more sedated. I called hospice and spoke to Louise (Lauren is still on vacation) and she said she would stop by. When I discussed it with her, she said they had just been discussing a different dosing strategy for morphine, in which I would take a smaller amount but more often, as well as using ativan regularly, and it has been working really well. I've been drifting in and out of sleep and when I'm awake I'm calm and relaxed.
Katrina came by with the completed application for the Dream Foundation (which is like the much more well-known Make A Wish Foundation, only for terminally ill adults). Marty and I decided that the trip to New York, to see "West Side Story," was a good thing to ask for, since it seems to be in good agreement with their guidelines. For hospice patients, the application has to come directly from hospice--the only part I had to write was a description of what I was asking for. I had to sign it in several places, and Katrina is putting it in the mail today (they take applications only by mail).
When we were about to drop Donna off on Sunday Marty raised the topic of a conference he wants to go to in Philadelphia in a couple of weeks. It seems he's already discussed it with Donna, and she would be willing to stay overnight while he is gone (with PCA assistance during the day), and he wanted to know what I thought. I told him I thought it could work, but I also had a strong emotional reaction, which I didn't discuss until we got home (I didn't think it was a good idea while he was driving). But I did ask him to consider how he would feel if I died and he wasn't here, and he said he certainly has been giving that some thought. He's still very ambivalent about the trip and hasn't done any real planning (it's the weekend after next), so I'm not sure what will happen. There's another conference coming up in October that he wants to go to as well. The whole idea really scares me, but I know that it's important for Marty to keep up his involvement with things that are important to him--he'll need that involvement even more after I die. I'm sure we'll be talking about it more.
I think I'm ready to drift off again.