December 21, 2024 [Day 22]
Really it’s about the nausea caused by the new pain management regimen. With any luck the nausea is short-term, like a couple days, while the pain management team, now coming to the house, adjusts dosages and frequencies. I’m confident they will get The Droning Voice comfortable. Of course I am troubled that it took 20 days for the pain management process to begin.
Saturday morning here. Good morning. The circle on this email group gets a little bigger every time, as people learn of The Droning Voice’s state. Transitioning it to a more public blog will probably be next – we seem to have crossed over the line from a smaller group who are in the thick of it, to a broader group of those who haven’t been caught up in it over the past three weeks for whatever reason. How do I say, “There was an announcement made at church,” which is how these things go. We don’t want anyone to feel like they have been left out of the conversation. Yes, prayers are good. And to those for whom “prayer” is an awkward term, the synchronicity of the universe(s) allows all that prayer energy to move freely and even moves it with purpose in benevolent directions. It is a primary force here at our house in these moments, and we thank everyone who thinks of us when such thought brings them both a smile and a worry today. Your thoughts apparently oil God’s machinery whether you know it or not, and you don’t have to know it to think about her. So thank you. No question, “what goes around comes around.” Poor as we all are. Fellow strugglers.
To recap, The Droning Voice went to the ER on November 30 (22 days ago) [Day 1] in terrible abdominal pain. First is was nagging pain in early October, then it got steadily worse. At the beginning of November she called the doctor who set an appointment for a month out (Dec 6) [Day 7] for a “stomach ache.” While waiting for the appointment, things ultimately got so bad we took her to Urgent Care the Saturday after Thanksgiving (Nov 30) [Day 1]. Urgent Care immediately sent her to the Emergency Room. When she was done, the CT report said “… highly concerning for primary pancreatic malignancy …” (they did not give us this report). Obviously we are calling this [Day 1]. What really happened is a nurse came out and verbally explained to The Droning Voice how she had a fist sized mass on her pancreas which could be cancer. We became worried even though we knew nothing about pancreas cancer except that we’d heard it was bad. This is how I wound up writing these updates and you are reading them.
In a nutshell, here is the awful truth about the current state of healthcare in the United States: Even though they found this mass on November 30 [Day 1], today is December 21 [Day 22] and we still do not have a firm diagnosis. There is not a biopsy yet. One day soon, when I re-fashion this into a blog, you can go back and review the frustrating posts about trying to get a biopsy done, which we’ve known was needed since November 30th [Day 1]. But today we have some refreshing good news (although one hates to think it could be “too little too late” but let’s not get ahead of it). Yesterday [Day 21] we finally had the long awaited consultation appointment with the surgeon who can do the needed biopsy with the endoscope and the ultrasound and the remote-control needle, who will then grab some of the actual tumor, and bring it out into the world for all to see (at least the local pathologist).
I digress, maybe because I use this writing as personal therapy to get stuff off my chest/out for the world to see, by saying he started the meeting by scheduling the biopsy procedure for January 6 [Day 38]. However, thanks to The Velvet Hammer, by the time we were done with the … conversation … it had been moved up to the day after Christmas, December 26 [Day 27] at 8:00am.
So yes, in a heart-breaking twist where someone in Big Health did the right thing, the biopsy specialist moved the appointment sooner once he understood the urgency. This means, before he met with the patient, he obviously did not understand the urgency. Which implicates a system where urgency is not one of the pieces in the decision process, and one where the doctor appears to be the last one to know what is going on. Both of these are very bad things.
Once he realized the urgency then … you will not believe the irony … he decided he should perform the biopsy while he was on call at the hospital. “Irony,” of course, because he has been on call at the hospital for the two weeks prior to yesterday’s appointment. His staff had said “You can’t talk to him when he’s on call” but now, of course, he himself actually scheduled the procedure when he would be on call because he knew it was urgent.
Heart-breaking because, if the urgency had been taken into account when the biopsy was ordered back on December 9 [Day 10] he might have done the biopsy already, over two weeks sooner, and we’d already know now if it is pancreas cancer or not.
You can’t make this up. The happy side of this note: Now it is scheduled. Finally. Yay.
Allow me to relate a more heart-warming story in the midst of this bout of Healthcare Hell. When she woke up this morning early to get dressed and get in the car and make the one-hour drive to where the biopsy specialist is located, The Droning Voice looked me straight in the eye and said, “I can’t do it.” She was referring to the likelihood of her ongoing nausea inducing diarrhea or vomiting during the drive, and of course how increasingly exhausted she continues to get with each day. Thinking fast, the advocate (me) called the clinic to work that one out. To their huge credit they immediately offered to conduct the consultation via teleconference (i.e. over a Zoom-like interface, which I am guessing cost bazillions of dollars for them to implement). One hour later, The Droning Voice was talking with the specialist live from her bed, via the internet.
It’s amazing to me that this system can respond like this, yet they don’t have the common sense to schedule a biopsy quickly at a time when the doc is already at the hospital.
‘Learned a new word: “Phlegmon: a specialized type of abscess that can arise from a small duodenal ulcer perforation which runs right by the head of the pancreas. It can look very similar to cancer on scans.” Hmm.
An MD friend helping me navigate this told me about phlegmons. Have any of her team mentioned phlegmons, ever, a single time? No they have not. Kind of like the first time anyone on the team told us about a celiac block for pain was on [Day 17]. You’d think when someone comes to the ER doubled up in abdominal pain, where they then find a mass choking the nerves going down into her guts, they might mention a celiac block, or better, order one.
Oh no. We got that ordered on December 17 [Day 18] only by taking our own initiative, then having to push on them. But the scheduling department for the doctor that does celiac blocks has not even called us yet to schedule it, today, 4 days after it was ordered (oh and today is Saturday, which assures us we won’t hear from them until Monday at the earliest). Next week is Christmas when all doctors are eager to put in some overtime. (That was a joke).
Reminder the initial report also says “Pancreatitis could have a similar appearance” but goes on to caution, “However, given regional vascular involvement as described, malignancy is favored.” The radiologist that wrote this was the most articulate of the bunch! I’d get him a beer. Of course we were never just handed this document. Ever. First, I had to be aware it existed, then know it belongs to the patient, and then know to request it. Many patients don’t understand these kinds of things belong to them, and never ask for them. That is very sad to me. I might try to fix that one day (but not today, I’ve got my hands full today).
To review:
A) Pain gets put by the wayside when a mass is discovered
B) To an oncologist everything looks like cancer
It’s a lot to think about. This note (“note”) is getting long. I’ll close with a Mayo update. We got all the wheels turning together in Rochester. We have already done the initial screening for a new patient, then we have scheduled the first appointment where the team looks at all the stuff they need to do their review process and come up with their approach strategy (December 24 in the morning via teleconference. Yes. Christmas Eve). Up until yesterday, the state of the biopsy remained a complete wildcard. Now we know it will take place on December 26 [Day 27], with results 3-5 work days later. Then, actual wet samples (i.e. live tissue) will be refrigerated-overnighted to Mayo (“loaned” to Mayo who is “borrowing” them, ha) where the Mayo pathologists will get a look. In my efforts to speed this up somehow, Mayo clarified to me yesterday afternoon that even if we got to Rochester sooner, they would likely not be able to do a biopsy any faster than what we arranged for here in Oklahoma. Although disappointing, it is really good to get real puzzle pieces like this right on the table. It’s like, when Mayo says it, you can just believe it and act accordingly. If the clowns with stethoscopes down here say it, you wonder exactly what they are not telling you, for instance how they could do a celiac block or they could send over a pain management team, but then it takes them weeks to even mention these things ([Day 17] and [Day 19], respectively). And that, only after banging on them until your hand is bleeding. At Mayo I am asking questions and getting answers within hours. One doc said, “At Mayo we try to treat every patient like their own family would treat them.” I can’t even describe how much peace I got, hearing that.
I feel like Galahad in Holy Grail who thoughtfully looks up the castle wall and, after a pause, he asks the insulting Frenchman, “Is there someone else up there we could talk to?”
Still unknown is what will happen if the biopsy shows no malignancy. Will Mayo suddenly lose interest? We still have this fist-sized mass that needs to not be inside The Droning Voice’s abdomen, that the Tulsa surgeon said he could not remove. Anyway, one step at a time, eh?