My health care provider approved the procedure, I was approved for Short term disability and asked to schedule a pre procedure anesthesiology meeting. We wondered if they knew something we didn't or just preparing for the worst.
When I got to the hospital today, they provided me an itinerary of the days events:
I started with the CT scan... pretty standard stuff although the nurse who put the needle in my arm asked to see the itinerary and, when she saw I had labs later, taped it up so they could use it again without the extra poke. Good thinking on her part. Scan went well and I headed up to meet with Cheryl, the NP and my Advocate.
I've emailed with Cheryl a bit over the past few weeks talking about the other Dr's, their opinions as well as asking questions about hockey, meds and travel. I think she's been a straight shooter and when she came in, I asked about the scheduled whipple and told her I dont see any way i'm getting on that table next week. She was cool and understanding while telling me they're looking at the scans which will tell the story..... We reviewed meds, weight (up 10 lbs in the past 4 weeks...), medical history, etc with the understanding the multidisciplinary board would again review my case and make a recommendation. While she felt surgery was off the table (she has a cancer patient she wants to put in my slot), she again said they are waiting on radiology and would know more at the afternoon meeting.
They walked me over for labs and I was surprised at how many stickers printed out..... she dropped these tubes on the table like pick up sticks and I had to snap a quick pic:
They pulled blood and sent me on my way saying to be back by 12:45 to check in for the 1pm. While not really enough time to go home and come back, I grabbed some lunch, read some emails and wondered what the hell they were going to say.
After checking in, they took me right back to a room and said the conference was still going on. Jen had a busy morning, was on her way for the big meeting when I texted her the room number and moments later, Dr. Del Chiaro came in with his classic....Hello Mr. Williams... and went right into it saying the steroids worked better then expected and there would be no reason to perform a whipple. Jen walked in and he repeated it saying the steroids reduced swelling all over and they're now wondering if the "lesion" is scar tissue from the first pancreatitis episode. While they've seen these spots on the pancreas, he said they seem to be moving around and not always in the same place..... bottom line is (and he qualified it again saying without a thorough biopsy and removal of pancreas) there is no way to say it's not cancer but they are finally saying the diagnosis is Autoimmune Pancreatitis. He also said, if teaching about AIP, he would not use my scans as they are unusual and dont look like a typical patients scans. It's a consistent theme we've heard from every dr on this journey.
Del Chiaro said he is a surgeon who will perform surgery to help people get healthy and often save their lives and, at this point, we will be moving back to the care of Dr. Wani, the pancreas specialist. This was great news as we've felt there was a bit of a miss that we kept talking with the surgery guy and not the pancreas Dr. While it was Dr. Ed who suggested we "try" the steroids, why didnt we see him (or Wani) months before while we were talking with Dr. DC?
I've been a little challenged with Del Chairo's attitude..... he's a little cavalier and maybe that's exactly what you need from the guys that's gonna make the cuts but it's a bit off putting when he says it's good to get additional opinions but then says, if the dr's call him, he will talk to them (without saying he will not make that call). One of his good friends is the head of Cedar's Surgical Oncology department, but he would not reach out to this friend to engage or make a connection with Dr. Nissen. I dont know... seems like collaboration isn't a bad thing when considering cutting out someones pancreas. But.... as I say that, I really like the guy and believe he's struggled making a decision because he understands how crappy the surgery could have been especially if he had to come back to us and say there was no cancer. So, he then surprised me.... by acknowledging what a good job we've done. He thanked us for not getting hysterical at the news (good and bad) and for getting additional opinions which, he acknowledged, made a difference. I told him I have his cell number and will call to check in....
So, what's next? We expect to hear from and see Dr. Wani in the near future with a call at some point this week. Big questions including do I continue taking the steroid and if so, what dosage and for how long? While I understand it's pumping me up right now, not sure how much longer I can take the constant need for food and round the clock appetite. Hungry.... all the time... Other topics for Wani include use of PPI (prevacid, prilosec, etc) and how long I can take one, Meeting with a nutritionist to understand more about diet including what to eat and what NOT to eat as well as basic management of AIP. I'm reading what I find on the internet but can any of you really tell me what I should do first thing in the morning? Is it a big cup of water or fresh made organic celery juice or a protein shake? Yea, it's really confusing.
I received a bunch of emails from UCHealth saying test results and Dr's notes from todays appointments were available. While I dont know what all of it means, there was an update on my August 11th ERCP appointment which read, "he is scheduled for stent removal on 8/11 and aware to keep this appointment." Great news as they'll pull the stent and not put a new one in!
Sometimes I think I find the perfect word(s) and other times I know I miss the target but the sense of relief we've felt and talked about today is on point. The whipple was cancelled at 11am on Sunday and I had a 6am check in the next morning for an 8am procedure..... We were that close to a (possibly) unnecessary major surgery. To all of those who suggested questioning things, getting 2nd opinions and helped us find Dr's, thank you. I understand we have to be our own best advocate and sometimes thats rough so I appreciate your constant nagging.
The thoughts from family, friends and strangers make a difference and we're grateful for the support. Lots more to follow as we learn about living with AIP.
And finally, while googling things about AIP, this shirt came up and is sort of funny....
Thank you for reading this, checking in and thinking of us. We appreciate it.
Sam
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