Unusual Cholangio Guy – Survivor Against the Odds

To all:

This is part of an email exchange at my personal email address, but since it contains thoughts relevant to this string, I thought to include it with some edit-outs of personal info from the sender.

Well, I say shaking my head, it’s nice that my very unconventional views are finally finding a welcome somewhere, albeit very late (if not too late) in life and only resulting from a medical event the equivalent of a firing squad. I’m very surprised I have such support for my approach and view anywhere and really seem to have it here. Oddly, I really haven’t received much flak from anywhere; I guess those who don’t like my way are staying mum or out of sight.

It surely is a bad cancer. No need to soften any words with me about anything. As for resources, I was lucky to have Dr. Carlos in Boston and his anesthesiologist; I am lucky to have my onco Dr. Hoffman here in LA. He understands my position and won’t fight me on it. He told me (and those I always bring with me, my daughter and best friend as witnesses as I need to recall everything that was said where I might miss something were I alone) that his mom would do as I am and his dad would do everything to fight it with chemo, radio, surgery, etc. He is well-educated about all this, important as even the smartest on this don’t know that much. On the other hand, Dr. Patty, radiation onco down the street, is insistent I undergo a series of blasts at her place. She is tops in her field and very sweet and the place is great. But it was she among 4 others who misidentified those liver blobs. Her machine rotates and would shield a lot of me from the positrons but would bake the upper part of my right kidney. I asked about the adrenal sitting atop that kidney and she said in all her practice she’s never been asked about that at all. I ask what others don’t. I don’t just go along. I need that adrenal and her answers didn’t assure me whatsoever. She keeps wanting me to “come down and chat” but really get pressured into her series of radiation. Best stats are they would only improve my chances 10% at best under the schema of I’m 60% dead anyway and this would reduce that to 50%. But I would be sick, tired, have a disabled kidney and baked adrenal, etc. and what if getting hit lowers my overall immunity so I’m now just weak enough where the cancer can jump over my now lowered fence like a Little Sheep of Death? I am hugely more willing to die (inevitable) than be sick (a choice for now). Now if this were breast cancer with tons of studies and facts and where adjuvant therapy increases one’s chances around 70%, I’d be going for chemo, radio, whatever they said.

So I’m not really “fighting it” in a normal way of speaking. I take weird and unknown Chinese powders and pills, eat asparagus (heard about that one? It’s the only cancer cure anyone needs! Look it up), avoid things that weaken me, don’t let myself get too tired (I nap), stay busy and out of hospitals and lots else. I don’t do as much or more than I do do. It’s a ying-yang approach. Haven’t got to Xi Gong yet but consider it important and it’s on my list. The yoga at the Onco place I go in LA was far below my level and not my cup of tea; they offer Xi Gong there & I’ll try theirs first.

Your husband’s history with a lower tummy gone wrong is really long and must have been quite a trek for anyone involved. My old friend has had IBS and surgeries and all that stuff for 30 years and he was an nuclear submarine commander! How can you live underwater and have heavy responsibilities and your guts are on fire all the time? My hat’s off to your husband and his kind, long-sufferers in a body region most just take for granted scratching our pizza-fed, pouchy bellies and never noticing much about much.

You are very sweet and it’s nice to be understood as only we in the cc club can understand each other.

Thanks for writing

Webmasters:

Why do these posts show as 3.20 and not 3.22, the real date which was 2 days later? I’m confused enough already.

Jeff

Eli

thanks. I’m probably tired. Can’t make it work just yet.
Right-click image file
Select Edit… to open Paint
Click Resize on the toolbar
Enter the desired size in pixels
Save as a new file
Did all that but now the pic is a tiny square up in the corner of a huge white page and won’t transfer over. I will try as if it doesn’t work, I’m sure I can re-do it.

Jeff

Darla,
In our culture, we say, think and know so little about life, death, breathing, standing, sitting, walking, chewing, elimination, sex, thought, feeling, etc.- all the basics of life and things that matter. We know tons about what drug some idiot star is on or what shoes Miss So and So wore at the Moron Awards Show. It’s all upside down. So-called ‘primitive cultures’ are the opposite, so who is really primitive? Here, progress looks more like lunacy.

Your words are invigorating and I thank you for them. Your husband is like many- it comes so quick, you barely have time to react. I’m no expert, but I believe many just die and never even know they had cc. Of those that find out, their doc calls in the family and they are told he has months to live and then he dies in weeks. Not many get early notice. Mine was one jellybean-shaped mass at 1.8 cm. (good to be under 2) at 2.3 cm. away from the pancreas (good to be over 2) on the outside of the common duct leaning into it. That’s why I had fat malabsorption I mistook for food poisoning. The jellybean was resected by an expert who said that appeared to be all there was (the large vein and small nerve involvements came from subsequent pathology studies). I asked what if I were a rich guy travelling and in Bora Bora, Pago Pago and could take 45 or 60 days to get to him instead of when I did. He just shook his head. For me, it was I’m dead in 50 days or doomed to die soon without the Whipple right away.

Most of my life cancer was discovered at some point and took people down slowly. CC is a fast actor and often affords little time like your husband’s experience. It’s also rare and therefore unknown in large part. When Dr. Hong from Harvard and his team saw me, he spoke so well it was like a speech written by Winston Churchill. He said there’s tons of info on bone, brain, breast cancers, lung and liver, everything but cc. He said there are so few cases and fewer still that last long that there’s no real knowing what adjuvant treatment works or does what- it’s all educated guessing. He wanted me on giant hits of gemcitabine and cis-platin with radio with folfiri at something like 80 sessions total. I was flabbergasted. Then I found it really was guessing and called him back. He conceded this is what he would do in my condition but that he could not say anything with the authority he could on almost everything else cancer. Cc is even more mysterious than it is deadly. I didn’t want to spend my days, many or few, vomiting into a bucket at bedside and then finally dropping dead. I saw my father do that, and it sucked.

You know the old expression that cowboys die with their boots on? I’m going out in a handstand. My coffin will be upside down- that’s the way I want it. CC may come back and kill my body (something has to eventually), but it won’t kill my spirit.

I’m inhaling in the positives as fast as you can churn them out. Thanks,

Best, Jeff

Hi Eli,

Your wife is the very first cc, Whipple, Extrahep, T3 so far! I thought I was alone. Not too many of us I bet. You are a hero in what you are doing for your wife. After the Whipple when I was weak, I could barely do or think anything. I was so diminished. My first shower took me 2.25 hours. It was a Manna, not a handstand, but a very minor point.

You sound very educated and thorough in your approach to your wife’s situation. I am grateful I’m so much at an extreme and not in the thicket of decision-making forced upon you and your wife. It would be so hard to figure out what to do! You don’t know if you’ve made a good choice before or after you make it. Throwing darts by contrast is great because you can see how well/poorly you did. Her being so fit really helps, but cc is so powerful that nothing can overcome it if it rears up to get us.

With a 13 year-old, as I wrote just a bit ago, it’s different. Then, extension of time means a lot and I can see going thru a lot of agony to spend more time with a growing kid. Then, quantity does indeed more or less = quality.

I sure learned a lot from you about the Canadian medical system. Some good and some bad. I see why very rich Canadians are down here buying instant Whipples and so on. I have had MRI’s, CATs, PETs, some with contrast, etc. It seems the PET with contrast is very valuable and I’m grateful that 12 minutes away from here is one place with all those machines and very nice people running them. Everything is good- except the price. One PET was billed at $13,900 and I’m still fighting my insurance company over it.

You are smart and I appreciate your technical advice. It’s right on and easy to follow.

I will keep writing until I can’t. This site is great.

Best regards to you and your wife,

Jeff

Hi Lainy,

What a delightful post. It is truly a great group. A friend, a professional writing teacher and coach, says I AM a writer and a good one, but as one who never took a writing course, I don’t call myself one, I just open the gates and try to be truthful and fearless. Sometimes it comes out surprisingly well. I wrote a few short stories mostly about my youth just to feel what it once felt like, and odd as it is, they are most enjoyed by writers! (those without bloated Hollywood egos, that is).

I cringe at the idea of a Whipple that needs redoing. My guy did those plus took rejected cases from Johns Hopkins, ones with things twisted round each other, etc. We all want top people helping us from dog walkers to accountants to caterers, but especially SURGEONS and most of all anyone doing a Whipple. Imagine a so-so Whipple. Ugh. Thanks for Teddy’s full story where I get a sense of time- so helpful. 6 years is a good stretch and 78 is up there anyway. To die of something when old is inevitable; to have cc at 14 would be a real bummer. I see his golf as his meditation. Good for him. Realism balanced with optimism is exactly where I try to position myself. Email you? Here? Is there a separate address? Why do I often with computers feel like Grandpa struggling with a TV remote in 1959 only his grandkids could operate?

Best, Jeff

Hi Liz

This is so ironic. I never encounter people of much substance on the Web and thought it was just stuffy, perfectionistic me. I don’t use face book and disdain those glued to their screens all day. But this site has turned me around. I can barely cook dinner for want of seeing the next exciting post! How can such a good thing come from such a bad one? Sweet irony!

Mine was distal; I can’t recall if that was a good or bad thing now that you bring that up. The 2 actual mets in the liver are worrisome. The dispute between experts is what I’ve come to expect around here. The having children thing does change how we approach this and there is a reason to stay around longer with growing kids. These days when I see a kid, I can’t help think about how much time they have ahead. About this, there is the Temporal Forward Wall as I call it. Most of my life I thought of myself in the middle of time so to speak like I think of myself in the middle of space. Who enters a room and then clings to the wall on the right? We all kind of gravitate toward center. But now I feel like I’m in a time tunnel with the end of [this] time rather close up front, sort of like a windshield about to hit me on the nose. Kids never feel that way or think about the subject at all. We were all kids once.

Your coverage sounds great! I’m happy for you. If the MRI sees no mets, how do we know they are there? What is his CA 19-9?

To reply to the adage in green at bottom, I would offer: Some of us walk on water; I just plop in and start swimming.

Jeff