Unusual Cholangio Guy – Survivor Against the Odds

Lainy and Bob,

15 years? That would seem to be rare. I found out early that cc is so rare that good stats are hard come by and unreliable. Some friends have chided me for trying to look at stats with “Just live your life!” and their point is well taken and intended, but still I like to know where I am as much as possible.

Is it true that in general survival is under 50% for 3 years? And it depends on so many factors, the T, R, N, where it was found, its size, how far from other structures, etc.?

I think by the time someone is 7 or more years out, they will probably die of something other than cc, right? “Remission” has become an increasingly fuzzy word in my mind, seeming to mean “We don’t see it now” but “It could come back any moment.”

To what would you ascribe your long 15 years since diagnosis? What did you do for how long and how did you feel? How has the field of cc changed over your 15 years in it?

It’s great to hear from a Major cc Veteran. Anything you have to say is much appreciated here.

Best, Jeff

32 Coupe

Thanks for writing. I do see that it’s hard to feel threatened by much with CC inside me. At the airport, I didn’t worry about terrorists, the TSA, patdowns or anything else. I did say I wanted the patdown vs. the radiation from the machine, and the TSA seemed fine with that.

Jeff

Hi Jim

I’m no doc, but I think a resection just means cutting something out. The full Whipple is a whole rearrangment of parts with chop-outs of pancreas, small intestine, large intestine, stomach, removal of common duct, sewing of liver onto large intestine and more.

By “around here” you mean this site? Here in populous LA, I can’t find hardly anyone with anything. This site is so much better.

Jeff

Swearwords and Good Foods in an Extreme Life

Hey Y’all,

Why are there stars in my words as well as my eyes? I say da*n the torpedoes, it’s full speed ahead. While this is a fearless group and probably far beyond word sensitivity, I thought it best to err on the side of civility. Stars allow me to swear but at the same time not directly offend, so I am neither muzzled nor offensive. After decades of writing poetry, I recently switched to writing short stories that allow me ‘get it all out’ which sometimes involves very spicy language to describe very scabrous events. Having lived a life of some extreme range, this is the way it is. I’m sort of like a frilly viscount by day and alley crawler at night, so I like to quote Tennyson while kicking a mugger’s knee (actually happened). I think I took in too much of Have Gun Will Travel as a youth for those old and American enough to remember that TV series starring Richard Boone. I became that character, Paladin.

My own intake is very odd. My daughter’s mom inveighs against any red meat, seafood, bamboo, mushrooms and other foodstuffs, the list changing time to time but always rigidly enforced. They all feed cancer per her beliefs. She does make me a good bean soup she says kills cancer with several kinds of beans along with somethings akin to ginseng and goji berries. Warren Kramer, famed macrobiotic maven I met in Boston, says never eat more than one kind of bean at any one time. His diet is so boring and tasteless that I’d be dead in a week on it as I’d never eat enough. Some acolyte of his wanted to charge me $250/3 days to make and bring it over, and I had an easy time saying no. (You have to order everything special from Japan or other places; for them Whole Foods is totally low, like McDonalds). My trainer at the gym can make kale and cabbage salads I find much tastier and my gut enjoys, so I sometimes have her whip up batches and scarf them down. Food testers find lamb to be good for me, and when I eat New Zealand lamb chops, I really do feel good then and after. I eat yams for health despite their unappealing taste, eggs every morning, love Brussels sprouts (apparently the most salubrious of the cruciferous veggies) and can eat limitless amounts of cilantro. I had one session with famed nutritionist Eileen Poole, now around 95, who said in all her years had never had a patient quite like me. On her list of foods, she couldn’t find many to check off. Just about all grains, most fruits, many veggies, chicken, turkey- not particularly good for me. Cilantro was tops (she uses muscle testing) and said to eat 4 pounds a day if I like. So, like many of us, I’m all over the map intake-wise, but as I am a bit more extreme as already claimed above, maybe have a wider map. One belief I might have is we die, meet God, and God says none of that mattered anyway and we just fretted and strutted and wasted our time over it. Attitude may be more important than the material we eat. The French can drink alcohol, eat fats and pastries, but because they make love to their food while eating it (and therefore to themselves) instead of treating meals like impositions to be got out of the way (chomping down a Subway sandwich in the car racing to yet another pointless meeting), their food turns to good stuff within them while the Subway meal turns to crap.

And not only Eileen found me unique. I saw this other famed character John Wyrick who reads auras. It was an interesting session including some impressive chiropractic he was originally trained in but no longer does except when he feels like it. At the end of the session, as I’m writing my check, I look up to see him staring at me. I ask what he’s looking at and he says it’s my aura, that he never in all his years and readings seen one like it. I had to ask was that good, bad, up, down or what exactly. He said not really anything like that, just that the shape, nature and character of my aura was unique and he had never seen it before, all the while staring at me intently. I wish I could know more of what he spoke, but in a way it seemed not even he knew more than its unusualness.

Maybe my unusual nature is part of why I can be a ECC T3 and still able to do the 5-step triangle pushup (a tab on the YouTube site with my Manna) that none of the muscleheads at the gym can do. Who knows?

Manger comme le font les Français,

Jeff