Here's where things got interesting from a bioethics perspective. Jason and i just happened to run into my oncologist while looking out of a waiting room window at the sunset. He mentioned that my bilirubin had gone up, suggesting that the surgery had not worked. But none of the other physicians working on my case told us. I planned to get the test repeated Tuesday morning (you just have to ask the nurses---surprising what you can get by asking nicely). And on that test the bilirubin was continuing to increase. I asked to talk to the physician in charge of my case and discussed this with him. First I wanted to know why no one had told me, and then wanted to know whether there was anything to do about it. He explained that in hospice (which I was entering) they treat only for symptoms, and that the biological indicator that the bile ducts were still blocked did not warrant treatment. I was taken aback, and it took some time to understand this perspective. I decided that since I was admitted because of the blocked duct, my goal had become to fix that precisely. He did some recalculation internally, and said that what he could do is talk to the gastroenterologist and see if she could improve the outcome. She asked for a CT scan, which showed the area above the stent clogged with debris, and then offered to go in again and clear it out. Literally 30 minutes later, at about 6:00PM, she was at my hospital room pushing a bed to take me down to surgery herself. (She knocked on my door, stuck her head in and said "Do we have a date." Turned out that there were no "transporters" readily available, so she did it herself.) That surgery was successful, and i was discharged on Wednesday feeling pretty good.
It has been very difficult since I got home. Five days in the hospital left me weak and it was hard to recruit the muscles just get out of bed. Any maybe drinking a few glasses of wine with dinner was stupid, because the next few hours were all about drug interactions. In the midst of this small crisis, I circled back to the thought that in hospice you don't treat a biological measure---because here I was treated and absolutely miserable anyway. How exactly was I benefiting?
So now I am at the last question, which is when to exit. Is that something you put into your outlook calendar? And how exactly do you label it? Is it an all day event? Can you set an outlook end date to eternity? What I did was look at my scheduled events, like visits and theatre, and picked the week when it all calms down. That turned out to be the first week in April, and that's the plan. Perhaps optimistic, but you need to start somewhere.
One lovely thing that happened at the hospital was a visit from my old boss/mentor/friend John, who lives in New Zealand but was in Seattle for a few days. It was the most difficult goodbye to date, because the situation was so dire and there was nothing to cut the sadness. It was just the two of us recognizing each other in a dark pall of grief.