December 13, 2024 [Day 14]
Good Friday morning – a short update:
Building our own care team seems to be going well. We learned this lesson decades ago when we needed to manage The Eldest Unmarried’s journey, so it’s not our first rodeo.
I got an excellent crash course in pain management Tuesday. A Doc friend advised I was getting squirreled by the horrible cancer questions, and forgetting that The Droning Voice went to the ER because she was in a lot of pain. I was very glad for that reminder from a friend. Anyway, we are now being methodical about pain management while we wait.
We connected quite successfully with the biopsy specialist and the surgeon. I asked around (the country) and we conclude these two doctors could get a job doing what they specialize in, in any big city in the USA. They are really good at what they do. Tulsa is lucky to have them. That is a good reality check. We have confidence in this team.
We booked a firm date, not for the biopsy but for the consultation that is required to take place before they can schedule the biopsy (you can see my face getting red). Because he is on call at the hospital until December 20, he can’t see anyone until December 20. We have an appointment on the morning of December 20. I have to conclude that is the best we can do.
Slowly I am getting used to this idea that things will not happen as soon as I want. My inner 2-year-old does not approve. But some good news: the surgeon (the possible procedure that could happen after the biopsy depending on what they find) called The Droning Voice and scheduled their consultation for first thing Monday morning (8am) – three days from now (what a breath of fresh air). We will take that opportunity to work some kind of magic on him, and hope upon hope he will have a chance to talk to the biopsy doc and they will be totally coordinated (maybe even in cahoots) when it come time to get sorted. Kind of a doctor-version of being the squeaky wheel, as they say in the South, “in a nice way.” I did say it wasn’t our first rodeo.
We are receiving some profound comments about (what I would call the cutting-edge effects of) diet and nutrients on cancer of the pancreas. My sense is, if The Droning Voice gets a cancer diagnosis, there may be some very strong directions we can go, especially if the surgeon can rearrange her innards so she can better eat and digest food again.
The near-term holds that she will push hard today and through the weekend. A big performance tonight involving 18 students and 4 adults on 14 electronic keyboards-plus-piano-plus-pipe-organ, then a dress rehearsal Saturday morning involving 5 octaves of handbells for a different performance Saturday evening. Sunday she is the Director of Music for the Presbyterian Church, where she has 11 players on 4 octaves of handbells for the Third Sunday in Advent (It’s hard to get her to stop moving big heavy things all over the place). After church on Sunday afternoon, we can go home with all that push done.
That will be the point at which she can relax (“relax”). She will sleep, then in the morning she will consult with the surgeon. I’ll be with her the whole time. I have urged her to take the week off and I think she will. She needs a break. Although I am already more retired than not, my employer has given me the week off too. We have a strong circle of support ready to just honcho the rest of the music through the rest of the season. We have even got January into Lent moving forward nicely.
However, we all need to work together next week to keep her from going down rabbit holes, to keep her from going off into the weeds, to keep her on the rails, to keep all squirrels away. On my end I will manage her pain, I hope making it possible for her to indulge in all the mental diversions that her landscape and circle of friends can share. Call her. Text her. Talk about crazy stuff. Get her so riled up you can laugh about it with her later. That sort of thing. Mental diversion.
She’s reading this and she’s going to say “You’re not fooling anybody you know” but she will laugh and smile which is important. We’ll try to get all the right foods down her (and none of the wrong ones) Jack. And ramp up the Vitamin C, Charlie.
Anyway, that is to say, we have to own this stupid “holding pattern” and just get through it. This is the script, now we have to play the roles. In my dreams the biopsy gastroenterologist will meet with her Friday and put her on the slate as soon as possible, ideally the following week. Then all the alarms might start again after we have the answer to the fundamental question, is it cancer Y/N and if Y then what stage. Logic is good. But of course it does not treat pain.
Or it could be a macabre “all clear” with an eerie silence. We won’t know until it happens. We continue to try to hold the “what ifs” at bay (OMG that is freaking hard). Thanks for all your help and support in this.