His full name is Dr. Edmundowicz, but the nurse called him Dr. Ed and that worked for me. He is the Medical director of the Digestive Health center at UCHealth and we met with him today. You can tell a lot by how the a Dr looks at you as they walk in the room... and we instantly liked him. Right to the point as he stated there was nothing in my test results showing a connection to Autoimmune Pancreatitis (AIP) and really no reason to do the steroid therapy especially because the meds and full review time can be up to 6 months. He's a 30 year MD and said he's never seen my situation before and felt, at this point, the only way to understand what's happening is to have the surgery and trust that Dr Del Chairo will leave as much of the pancreas as possible (they would biopsy while i'm in surgery) based off the patholoy. He provided additional details about the diabetes as it's not a typical type 1 or 2 because the pancreas is gone, discussed what having an insulin pump is like today (vs just 5 years ago) and acknowledged, there is a chance I could play hockey again by disconnecting the pump while playing.... He also admitted having the insulin pump is kind of cheating as I could eat as I wanted, with little concern for blood sugar, and the pump would do the heavy lifting although he didnt recommend it.
While it's not what we wanted to hear, it was a good conversation and somehow not as scary. We asked his thought on how I got sick and he said there are only 2 influences: Genetics and environment. As I mentioned, he doesnt know what to call whats going on with me. He was going to call Del Chairo after we left and discuss next steps. Maybe an hour after our visit, he called and mentioned he talked with Del Chairo, who is getting ready to travel out of the country for a few weeks and asked if i'd be interested in trying the steroids as nothing is going to happen right away. I asked about potential side effects and he said while sometimes people feel sore, usually they react well to the Steroids. I said i'd try it and checked my Health portal to see if any notes from Del Chairo's group as I had sent a message that we met with Dr. Ed and asked what's next. In fact there was a response from them saying they would call me this afternoon to talk about the plan.....
Later in the afternoon, as I was having some of these random stomach pings, I laid down for a few minutes and checked the portal again to discover some notes posted from last Tuesday's visit. In them both Del Chairo and the other Dr he had in the room, provided a recap of the meeting including mentioning in his follow up notes we'd meet with Dr. Ed today and then scans again in 3 weeks.... While we didnt ask him if he was going on vacation, it's clear when we saw him last week he was aware he would be out of the office for a bit but he didnt mention it. One of the biggest concerns at this point is not going past the imaginary "point of no return" where the tumor wraps around the portal vein and makes it impossible to remove. It was THE question I was going to ask when they called today but they never did. I'm leaning into their experience to tell me a few weeks wont make a difference and then I consider the March scans showed some reduction in the tumor size before ruining our May vacation. I'll send them a note asking to call me first thing in the am.
Couple of things.... I'm okay getting through the holiday weekend as there are 3 Dead & Company shows in Boulder and, when they originally scheduled the surgery for June 12th, I accepted I'd miss them but now, it's on and i cant think of a better place to go before a life changing surgery. If there is a place I find peaceful and stress free, it's anything to do with the Grateful Dead. Last week was Grateful Dead meet up at the movies and we went on Thursday Night. It was a birthday gift and Jennifer was kind enough to sit through 3+ hours of a June 1991 concert shown for the first time. It was magic...
Secondly, I'm considering looking for a 2nd opinion in the interim. Well, I guess it's really a 5th opinion but, if they're going to cut me open, lets make sure it's for the right reason. More to follow.
Finally, Dr. Ed mentioned environmental influences and after the meeting, Jennifer remembered something my sister Heather said a while ago about an unusually large amount of people in the area we grew up getting sick. I called her and she said Yea, there was a big deal with Rocketdyne in the West San Fernando Valley so I googled it and opened a can of worms....
1st: The actual Rocketdyne offices, located diagonal from our school on Vanowen, is a 47 acre vacant parcel where they had 2 small nuclear reactors which drained into the wash that split right next to our high school. The site is currently one of the largest vacant land parcels in LA county but is still contaminated from all the years of misuse. The red area is Canoga Park High School and the purple area is where Rocketdyne used to sit:
The blue arrow above is approximately where I grew up in Canoga Park. Pretty concerning for the people in Eastern Simi Valley as well. This map shows the distance from SSFL:
There is a fascinating documentary called "In the Dark of the Valley" as parents realized their kids were getting sick with rare brain cancer usually seen in 1 out of a million kids but there were many of them at the Children's hospital in LA and they realized they lived close to each other and in one case, 3 of them on the same street (although a long street). Apparently there are many people we know/knew with little or no family cancer history who lived in the west valley and ended up with Cancer.
I'm not saying my current or prior health challenges were caused by this but could they have been?? We drank out of the hose and the water came down from SSFL.... Is it possible? Anyway, that's what happened today and it's fucking nuts. I'll let you know what the doc says when he finally calls....
Appreciate the continued calls, texts and emails. You're super.
Sam
A couple links if you're intrigued
https://parentsagainstssfl.com/
1 comment:
Damn, sounds like a case for Erin Brockovich.
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