Saturday, July 19, 2008
I've got an email inbox full of messages I will get to as quickly as I can--but I thought this might be a way to let as many of you know as possible how the week turned out. The problems I had early in the week with not eating, being full of gas again, and all those other delights meant many visits from nurses and one from the palliative care doctor to see if we could get a handle of one of the possible options from the usual menu. If you expected to hear from me and didn't, it was likely that I was talking to, being measured by, answering questions from someone medical.
Then things started to turn around on Thursday, so while I am no further ahead in figuring anything out, at least I feel a lot better. I am always happy to receive the gifts of my body's efforts to make things work more normally.
Slowly, I am getting used to this new world of being a palliative patient. Any of you who know my poetry know that much of it deals with falling down that Alice in Wonderland rabbit hole, where you start out being yourself and end up in the strange, upside-down-world of patienthood, where you become in some sense a stranger to yourself and have to learn a whole new set of roles and get good at reading subtle signals and entrails.
So I thought I kind of had the patient thing nailed, and there weren't any more of those sorts of surprises. Maybe it has less to do with being a palliative patient than having more than one team working with you at the same time. That will take more time to figure out. Anyhow, my oncologist is dealing with chemo and its effects on the bowel, and the palliative folk are dealing with shots in the bum and their effect on the bowel. At the moment, it feels like two completely different teams, two different sets of questions--but only one poor bowel, which would actually like the two teams to talk to each other a little more.
In a way, it's been a little like watching a tennis match, made somewhat challenging because my oncologist is on holiday, so I'm only seeing one side of the play. I get to see him on Wednesday to get a clear clinical picture of whether/the extent to which the chemo is working. I'll also get his take on the belly distention and how he thinks the bowel working. Since he's done two surgeries down there and been up to his elbows, I reckon nobody know the territory better. Then I can put that together with the palliative picture of the bum shots and symptom management and see if I understand the big picture a bit better.
I think what has surprised me is that I had to lead the charge on bringing the two parts together. I can never function very well when I don't have the big picture, and I've never liked the part of being a patient that puts the big picture only in the hands of the pros. I need to hear my own voice, recognize myself and make decisions. Even if I'm wearing a stupid blue gown and no shoes.
I've worked with my oncology team for so long that we know how this goes. When I was in hospital, one of the residents told me that on the first set of rounds where my doc presented me (what an odd term--but I watch too much tv), he said that I probably know as much about my disease as anyone on the floor, and she was to listen up when I asked questions or told her anything.
I liked that. The palliative team doesn't know me yet, so part of my job is to get that going. I put an oar in the water on Friday when the nurse asked, full of concern, if I had any unfinished business left. Other than farting, I assumed. I knew full well what she meant, but chose to misunderstand.
"Hell, yes. I'm not ready to cash out yet. I've got a swat of writing that seems to be growing by the week, and I'm damned if I'm giving up on it. So let's get this show on the road."
It wasn't much, but it was a start.
Then I had the big treat of my sister, Pam, coming in from Saskatoon again. We are at Sharon's hanging out and keeping close for the weekend.