Unusual Cholangio Guy – Survivor Against the Odds

TO THE CHOLANGIO GROUP

I could never find many cc’s and am glad my assistant took my dare and found this site. My case is fairly unusual, but as a fellow cc, I feel more at home here than anywhere else I’ve seen. So far I’ve just read 25 of the 49 postings, and I especially like the interaction and detail as well as the involvement of the site managers. I must admit that here as elsewhere there is a sense of incompletion as situations are described but seldom to later on or an end. So I read, “Bob tried treatment XYZ…” and that’s two years ago. I don’t read, “And he’s now in remission”, or “He’s fully recovered and playing hockey daily” or “He lost his battle and passed on two months ago.” Without reading how things turned out, I surmise that they didn’t turn out well and the full story just isn’t being told because it’s too painful and maybe seen as not productive. But I would sure like to find out from beginning to end. How do other readers feel about this?

Up to September of last year I was extremely healthy except for a doctor-caused bad toe leading to a compromised walk, inability to use a treadmill or run, hip problems, etc. Then I had a bout of indigestion that after 10 days did not clear. My docs are supposed to be the best in Beverly Hills, and while pretty good, they still made and make plenty of mistakes. They saw it as a gallbladder problem, so I had it out. But when they went to wash down the common duct, it splashed back. So next day I’m under GA for an ERCP and when I awoke, they are all there staring at me. At that moment I wish they had said, “You have big, fat cancer of a terrible type and are in huge trouble” but they mealy-mouthed and sent in a liver guy with his team. He said I needed a Whipple, and who am I to say no?

Making a very long and detailed story somewhat shorter (happy to fill in any details wanted), I learned of a surgeon at Mass General who is a pancreatic specialist and preferred that to a liver team, so I flew there for my Whipple. The LA team planned me to lose 1-2 L. of blood necessitating transfusion, etc.; the Boston guy was famous for great work and I lost just 200 cc. of blood. He’s one of those “magic hands” guys and among other things never had me evacuate my bowel before surgery or gave me any antibiotics afterwards. Damn unusual; I’ve had 10 days of Keflex for a splinter removal from my thumb. I was in hospital 8 days after the Whipple and in a hotel room for 30 days in Boston before the drains were out and I cleared for flight back to LA where I live.

At this point I was pretty beat up. A Whipple is maybe the King of Destructive Surgeries even though mine was well-done. The anesthesiologist used an epidural so the three operations I had within a month didn’t add up to more than they did, which was already plenty for me. I was “stupid” for months and it otherwise took a long time for my body and mind to recover. I was in great shape before the Whipple and am glad I was as this takes so much out of oneself. Chemo and radio were recommended, but as a T1, ‘watchful waiting’ was an option, and I took it.

I should mention I took care of my mother, father, two stepfathers and others in their last times, several dying of cancers (my Chinese father-in-law died of ductal cc just two years ago). I had resources, medical knowledge, contacts, money, energy and smarts to do a good job as a sort of one-man Hospice dude. I helped them to die on their terms as much as could be done. From this and other experiences in life, I have developed a rather unusual take on life/death and now it was time to apply it to me. I see life as 1, and I dig it. I see death as 3, and I’m OK with it. 2 is the in between, ideally some treatment where one is helped by the medical community to improve and get better. But in reality 2 can be a horrid zone of prolonged agony where energy and money is drained from the doomed patient and their family, where friends and others are put upon badly. Modern medicine can prolong life quite a bit, but I never want to become a piece of meat staying around and doing little but making heartless hospital accountants happy. I’m happy to live and accepting of death; I’m not willing to pause protractedly in between. I want to be a like a cat or bear- live at nearly full throttle almost my entire life, then die. Modern medicine can frustrate this desire. What I desire is QOL/EOT (quality of life over extension of time).

When the path reports came from Boston to LA, I was reassigned as a T3 as cells were in small nerves and large veins. Then a scan showed 4 large masses in my liver. Metastases obviously. I was reassigned as a T4, M1 untreatable, incurable and given a few months to live. But various docs wanted to poison and zap me anyway; I said no and planned to travel feeling I had left good time, medium time, bad time and then death. I made plans. It was 5 top docs who came up with the diagnosis. But I was skeptical as was the gifted surgeon in Boston (Professor at Harvard Med School and Director of Pancreatic and Biliary Surgery at Mass Gen). So I had a liver biopsy done. It went wrong (as have so many things in my and others’ medical lives) and it was undiagnostic but bruised my liver sack so I couldn’t take a good breath for 2 weeks. Then a second one. Again, unrevealing. Those slides are now back in Boston, but maybe they took from the wrong places so nothing will be learned anyway- who knows.

The Boston surgeon says they are likely not masses at all but a combination of empty space and fatty tissue left over from an infection from my gallbladder last year during a period I had no scans done. And sure enough my CA 19-9, 98 before surgery, has been under 8 the last 3 months; last Friday it was an all-time low of 5.9. Scans show the phony masses unchanged. Still, I am a CC, extrahepatic T3, and all the statistics I can find on this are grim with an 80% +- 20% of this coming back to surely kill me, 80% within 2 years, 18% within the next 3 years and 2% after that (correct anything I’m writing- facts are hard to come by). In all Los Angeles at the largest onco center, associated with huge Cedars Sinai, there’s only 2 CC’s I can find, one T2 and the other T1 and they are both intrahepatic, so they are luckier.

I threw a party for myself and friends figuring there would be one anyway and why shouldn’t I enjoy it while still alive. I called it my “Ain’t Dead Yet” soiree and it was good. Despite entreaties from various docs, I refuse to treat. I eat lamb chops (bad), kale (good), see off-beat healers, take unknown Chinese powders, nap, pet my cat, swim & dive and exercise like crazy. I will be 65 in a couple of months and can still do handstands. I have a trick I invented long ago on YouTube you get to by going to Google, then in the searchbox entering “Manna Man 64”. That was me in May, 2011. I can once again do that trick but not quite as well. If I die, I want to go out as the healthiest corpse around.

Then there is the money factor. Here in the USA, healthcare costs and costs a lot. My out of pocket medical expenses on this are over $50,000 and my alternative medicine costs are high. I have to fight with my insurance company over things that should be covered. My nest egg is getting eroded. The irony is if I’m to die soon, I’m rather rich, can spend lavishly and leave my daughter something significant for a young person. But if I beat this cancer and work to do so, I’ll run out of money sometime before my body fails. I worry more about waking up at 72 or 77 with no cash and just social security more than I do just dying a natural death. The default system is to both drain me of all my money and my health while “trying to cure” me. I have seen several cases of this, and I pledge not to become one myself. In the rest of the developed world this condition of things would be considered an atrocity, but here in the money-mad USA it’s the brutal reality. I may be able to beat cancer (or not) but I’ll never beat rapacious capitalism, so adjust to it I must with hard choices faced and made. Once again, I’m rather alone in my views as many with whom I grew up are so rich that their money could last indefinitely, so they obsess over health as defined by longevity and strive for immortality. I just try to live as well as I can for as long as I can. For those with less money, less insurance, fewer resources, worse conditions, diseases of degeneration instead of mine with its potential sudden plunge or a more clingy approach to life- well, I feel sorry for them, for they are really in a fix.

I am taking a 19-9 every 3 weeks and an MRI every 60 days. If either of those goes bad or I develop symptoms, I will activate my Bucket List and quit everyday things and travel during my remaining good time. Then I’ll return home for the medium time, race through the bad time and then die.

I respect everyone’s decision to do with their life what they wish, including treat, not treat, change one’s mind, go all-out to extend time or throw in the towel at any point. With my history, I seek to avoid 2 as described, and if I can’t live as 1, I’m ready to get to 3 with no complaints or regrets. As hard as it is to find fellow cc patients, you can imagine it’s even harder to find anyone with my attitude. I hope I am not coming across as glib, in denial or foolish, but I know that may be the impression I could leave in this writing. I have a sense of humor that includes my own illness and highly possible death from it, and I won’t give it up.

Best wishes and hopes to my fellow cc’ers, their families and loved ones. Peace and love. Jeff