Unusual Cholangio Guy – Survivor Against the Odds

Hi Peggy,

I’m glad to be accused of livening up things, ironic again as this site is about deadly matters. I not only go down with the ship, I go down smiling, laughing, guffawing. That’s my modus vivendi and I ain’t changing just because of something serious.

Around me I often see people not serious enough about serious matters and at the same time not light enough about everything. They can be distracted yet glum. What’s the point? I like to focus in on what I’m doing now and be a bit aggressive about imposing humor on most everything.

Hugs back,

Jeff

Re: CC Source and Angels on Earth

To All:

May I mention in a bit more detail how demolished I was after the Whipple. It was the 3rd surgery under GA in a month and a half. The Whipple used a mid-epi they refused to do here in LA; they laughed at me for suggesting one. Mid-epi’s are not unseen, but the anesth has to be very good and know their stuff. Had I had more gas and juice in a conventional GA, I’d have been even worse, and I was pretty bad as was.

I had insane dreams. Either there are other realms of existence I went to or the mind is bigger than any of us think- that’s how far away these dreams were. They were more real than my real life for a couple of weeks. In many, terrible people in my life were good and vice-versa. Everyone and everything in my history was covered over about 6 weeks. Intellectually, I was a mess: I had no memory. A doc would come in and say he’s Dr. Smith and next second I didn’t know his name.

Luckily for me, I had an angel. I had asked an old friend here in LA if he knew anyone in Boston. Turned out his nephew went to school with someone at MIT who employed someone who called me, a guy named George. I really didn’t need a private duty nurse; I needed someone who could walk 2 blocks to the store and get me yogurt. George went to every medical appointment with me. I could only remember 5% of what happened, but George took notes. He got me paperclips, food, warm socks, electrolyte water (so my calves didn’t cramp up). We took cabs to buy me a comforter (blankets were too heavy to let my weak body turn during sleep). Between him and my sweet daughter who wrecked her business quarter coming to spend days on end with me and her mother, I was so much better off than without them. Without them in a strange and cold city like Boston, I’d have been screwed. My IQ must have been 30% of normal; I couldn’t organize, remember, calculate, type on keyboard, make calls on the hotel phones- hardly anything. They say it was the 3rd knockout in such a short time that did this to me. My anesth said GA is basically killing you and leaving just enough to bring you back. If I’d had a giant car crash and spent my entire life on drugs I could hardly have been more helpless. Recovery was s-o s-l-o-w. One month after I needed a wheelchair at the airport like I’d need a car to travel 100 miles today. I tired easily, slept often, cried easily and had very weird eyes. Funny thing, just before diagnosis, I began to look odd. My eyes were deeper and harder than usual. I looked drawn though the same weight as normal. You’ll see a normal shot of me when Eli helps me get it posted, but I looked like that (I have a photo somewhere) but very much stranger, like Al Pacino’s psychopathic brother. My eyes were dark, recessed, shiny and beady. They belonged to a lizard but not me.

I should also mention etiology. Here is an exchange between an old high school friend and me on emails: Jeri: I have read that this kind of cancer can be caused by a parasite found in raw fish that can lodge deep inside your liver/gallbladder. Is this true? Did you eat a lot of sushi? Jeff’s answer: This cancer can come from a liver fluke (Opisthorchis viverrini ) that lives in Asian waters. I swam naked in waters in Thailand where it is especially prevalent and invariably swallowed water loaded with them. Funny you should know about this as my Bev Hills docs don’t know anything about it- dummies in many ways. – – – My weird face looked like some Thais I spent time with. Is there a fluke face? Did I have it? Did they? Is there even such a thing? Am I overly imaginative or hallucinating? My esteemed Bev Hills doc, department head at Cedars but very Western and dense in some ways, said, “If I find a giant worm, I’ll let you know.” But it’s a small trematode, and he was being dismissive. Here he is head of all gastroenterology at a major hospital in the USA, but when I mentioned FOS, he responded with a blank expression and said it must stand for “Full Of Shit”. It stands for Fructooligosaccharide, something anyone even glancingly familiar with digestion knows about. See why I’m so unsure of the brilliance of doctors, and I’m supposed to have some of the best around?

Back to George the Angel. It was old friend Joe’s nephew Ricky who went to school with Todd who employed George. How could George sometimes spend 7 hours with me? What was his job anyway? He was a software engineer, quite bright, Chinese like my adopted family and the only employee of Todd. So how could he spend time with me? After spending a day with me, he’d return to work and stay there until 3:30 AM. Todd turned out to be a real-life altruist who said, “I don’t even know this guy, but if he needs help, help him.” Where does that happen? On another planet? In heaven? Not too prevalent in my regular life that I can point to. Without George and daughter Christina and her mom Li coming to see me in Boston, I can’t imagine what ledge I’d have walked off. I could barely operate any device or recall one second to the next. For those without these beautiful human resources and all my other lucky breaks, I just can’t imagine how they survived at all.

So, to sum up: Did I get cc in Thailand? We’ll never know. Was I gifted with human angels around me? For sure. And that’s that.

Jeff

Hi Lainy

Dr. Patty, while unrelenting in wanting to nuke me, spent hours on the phone talking to a pimple-faced teen at the insurance company to get scan approvals. This seems a horrible misuse of her skills. She’s a doctor not a negotiator fer Chrissakes! Still, that one sort of full body scan was $13.9K and made my eyes fall out when I saw it on the bill.

Jeff