Six Hours Off the Tether

Two video appointments today: one with a palliative care doctor and one with a dietician. The first one was not an unqualified success, the second one ended with a plan that Jon likes.

I wasn't here for the palliative care conversation, but from Jon's report, it wasn't quite what he expected or hoped for. We thought it was an introduction, a relationship-starting meeting. She wanted to offer some therapeutic help. It sounds like this didn't go that well. They don't even know each other and she was telling Jon to get out of his head, to stop thinking about it so much. Oh dear. Plus she tried to establish some kind of rapport, as one smart person to another. Oh dear. When someone tells you she is smart, or you are smart, you start to doubt the whole interaction. She recommended trying a drug that his PCP had prescribed a year ago (an anti-depressant with appetite-increasing benefits). Alissa remembers that when he tried it last year, he ended up sleeping for two days straight and decided not to take it anymore. She recommends trying again but starting at a half dose and seeing how that goes. She agrees that this might be a good drug to try. He is considering it.

The nutritionist was good. She listened to Jon's impassioned description of what he wants to do and she agreed to try to figure out how to get there as quickly as possible. She was impressed with how much he is eating and how much weight he has gained, and she warned against gaining too much too fast. She said she will request an order to decrease his TPN time to 18 hours a day (she says it is just cruel to have someone on it 24 hours/day) and he should keep eating, trying to get to 2000 calories a day total. Even though we didn't have the official order yet, she said he could take a 6 hour break today. Rebecca promptly disconnected the line. The goal is to be free of the TPN within two weeks. Jon is highly motivated.

Jon's back continues to be the worst part of every day. He is in pain all the time, but it is much worse when he is standing. He cooked Shabbat dinner and got most of the way through it before he had to go back to his chair. Benjamin and Yael and kids came for dinner, as is our tradition. We had a nice, normal meal followed by a treat: pawpaw ice cream that Rebecca made from frozen pawpaws.  Less than half an hour later, Liana threw up.  Before they got her cleaned up, Mika threw up. We wondered if they were sick, but it seemed so weird to have both of them vomiting at the same time. Rebecca texted Alissa who sent back a link to an article saying that people can have a reaction to pawpaws if they are cooked (these were not), processed (sort of) or if you eat the skin or the seeds. After that poor little family got itself packed up to go home, Rebecca and I felt queasy but determined not to throw up. So far so good. 

I will say that I think Jon's mood is not so good today. He is kind of cranky. But pain will make you cranky and we know this from long experience. It also makes it extra hard to see and appreciate all that is going right. 

Anyway, the good news is that Jon did not eat any pawpaw ice cream.