December 17, 2024 [Day 18]
Some years ago I stood in line waiting for my luggage, alongside Garrison Keillor. He had done a performance in Tulsa the night before, and we were on the same flight to Dallas. He said he was in a hurry to get back to catch his wife in Carmen in St. Paul that evening.
I said, “Your wife does Carmen?”
“She’s playing viola in the pit.”
I couldn’t resist, “My wife has sung the role a couple times.”
His response, “You married a Carmen? Your life must be very interesting.”
I’ll take original conversations with famous celebrities for $200, Alex. I did not make that up. And yes … my life is very interesting thanks to The Droning Voice.
I tried writing youall last night and it was just too hard. Imagine the old scene where the guy writes, then tears the sheet off the pad, balls it up and throws it toward the trash can where it glances off the rim and lands on the floor with all the other balled up pieces of paper. Yesterday the Surgical Oncologist essentially told us it’s cancer, based just on what he could see on the CT scan, the biopsy is how you get absolute confirmation of malignancy, and he could also tell from the scan it would not be removable. The medical term is “locally advanced.”
The best case would be that it has not spread at all and would get treated with 6 poor-quality months of chemotherapy. The way they tell it has not spread is to do a CT scan of the chest, plus a PET scan, plus a Staging Laparoscopy where he gets an actual look inside her abdomen to check for spread of the disease which is not detected on the scans.
He said he would not recommend chemo if he finds spread of the disease on the inside of her abdomen. He said those patients do not survive, and the chemo only gets them a couple more poor-quality months.
Note you don’t hear about people who live to a ripe old age after beating cancer of the pancreas. (Although I realize there are a small number). All this appears to get a small percentage of the people who go through it “a little bit longer.” Like just long enough to get the full chemo nightmare. Ach. That’s depressing. We did not think that was very good at all.
We took the opportunity to bring the conversation back to The Droning Voice’s acute severe abdominal pain. He told us there was a relatively simple procedure called a celiac plexus block that blocks the main nerve to the abdomen and usually gets good results.
We quietly wondered why we are only hearing about this for the first time 17 days after going to the ER complaining of acute severe abdominal pain.
Today I called a friend at The Mayo Clinic and sent him the CT report. He is a cardiologist and I wanted to ask why, if they can do a heart bypass, why they can’t do a pancreas bypass. He agreed they tended to be more aggressive at the Mayo Clinic in their approach to pancreas tumor removal, and he would ask the Mayo surgeon who does all the pancreas cancer cases. He told me, “If it was my wife, this is the one guy I would trust to do it.” He told me if I don’t hear from him by the end of the day tomorrow, it was my right as a patient to call him up and ride him for an answer. I guess at Mayo they care about the patients. That was refreshing under the circumstances. Forgive me if that sounds snarky.
That was quite an interesting development. But wait. He called me back 10 minutes later, and told me the surgeon wants to see The Droning Voice, and Mayo can get us into the schedule before the end of the month.
I guess sometimes dad-bears can keep up with momma-bears. Sometimes a gatherer needs a hunter.
So while we wait around here for the biopsy and the remaining scans that still have yet to be done (today is [Day 18]), or the pain specialist who can do the celiac plexus block, but can only consult to talk about it after he gets back from vacation next Monday [Day 24], before considering moving forward with it, The Droning Voice gets to think about the interesting idea presented by the Mayo Clinic.
That would mean we have a lot of stuff to do before we might consider heading to Mayo, and it also depends completely on whether The Droning Voice even wants to take it on. She might not want to, but at least it’s nice to have the option.
Obviously it is notable that Mayo called back in only 10 minutes, just saying. We pray for strength to make whatever effort is called for, and the guidance to make good decisions.
That’s better news than if I had sent any of the drafts from last night. Meanwhile we really would like to get that celiac block done. Why did it take 17 days for Big Health to put a relatively simple procedure that affords substantial long-term relief from abdominal pain on the table? Why will it be 24 days before we can even talk to a pain doctor about the possibility of getting it?