Unusual Cholangio Guy – Survivor Against the Odds
Discussion Board › Forums › General Discussion › Unusual Cholangio Guy – Survivor Against the Odds
- This topic has 76 replies, 17 voices, and was last updated 12 years, 6 months ago by ccactive123.
-
AuthorPosts
-
March 24, 2012 at 6:20 pm #59226ccactive123Spectator
Eli
Holy S**t! I better eat carrots so my eyes are better as I seem to have read that piece very poorly. (I know- carrots don’t really imporve vision and it’s my mind that failed me). I will re-read that & see where I went so wrong. Wasn’t the headline about how great asparagus is? I thought..well, I’ll just have to read it again. Now I may need to convince Kathy to bonfire all her aspargus stockpile and never get near it again instead of ascribing her wellness to her ingestion of it.
This recalls the celery thing. I recall a debate over safroles and whether their prescence in celery prevented or caused cancer with no clear answer ever coming about.
Thanks for this correction. I never mind being wrong. I very much mind staying wrong or being left alone to remain wrong, and you have been helpful- once again.
Jeff
March 24, 2012 at 5:16 pm #59225EliSpectatorJeff!!
About asparagus. You wrote:
“Check out http://physicianswholisten.blogspot.ca/2011/06/will-asparagus-cure-cancer.html for this guy’s argument that asparagus is THE answer. I find it rather convincing as it can’t hurt and tastes good; who can say that about methotrexate?”
Being the diligent researcher that I am, I followed and read your link. The guy does not say that asparagus is THE answer. To some extent, he says the opposite.
Some choice quotes:
Physicians Who Listen wrote:There is no reason to believe that asparagus will cure cancer. It may actually make a few cancers worse.No studies describe the results of feeding asparagus to animals with cancer. Nor are there any published clinical trials on giving asparagus to human cancer patients.
It is certainly widely understood that diets high in vegetables are anticancer. Yet no evidence singles out asparagus in particular, suggesting it has an anticancer effect. There may be some health benefits from eating asparagus because it is a vegetable, but there is little reason to think that asparaguses are special.
While there is little reason to think that asparagus will cure cancer, there is good reason to think that asparagus may make some cancers, in particular acute lymphoblastic leukemia (ALL), worse.
Want to eat a green vegetable that comes close to being THE answer? Eat broccoli! Tons and Tons and Tons of studies found anticancer properties in broccoli. A quote from your link:
Physicians Who Listen wrote:In contrast [to asparagus] there is substantial information on the anticancer effect of other vegetables. For example, a current search of the National Institute of Health’s National Library of Medicine, lists 597 published articles related to the anticancer effect of broccoli.Best wishes,
EliMarch 24, 2012 at 4:37 pm #59224ccactive123SpectatorHi Kathy,
Congratulations on beating up the statistics. Of course I love that for general and selfish reasons. It may prove to be the asparagus after all.Was the liver treatment something experimental? How have your side effects been? The way you write about your treatments one might think you just breezed through them.
I’m glad you are cruising. Not cruising was the ‘Don error’, and I won’t ever forget it. Take as many, including on land, as you can. Tell them both Don and I sent you.
I figure that here, there, in the beyond or wherever we are and it is, we are already home, it’s just that home changes locations and definitions. But I know what you mean and like see you write it.
Twice a day! Now here’s an aspargusegian if ever there were one! This is why you’ve lived beyond your predicted time and cruised through serious treatments. I need to emulate your aspargusegian ways myself and hew to the program like cream cheese smeared on a bagel so it can’t fall off.
Thanks for your motivating post.
Best, Jeff
March 24, 2012 at 4:11 pm #59222ccactive123SpectatorHi 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
March 24, 2012 at 4:06 pm #59223ccactive123SpectatorMarions,
I have asked the knowledgeable Eli for help in finding a way to just see my posts in date order so I can copy them to Word. That’s a first step.
Thanks for your encouragement.
Hugs back,
Jeff
March 24, 2012 at 5:29 am #59221kathybMemberJeff,
I’ve read a lot of the above posts, but not all. You are a very interesting person.
Don’t believe the statistics about your situation. I was diagnosed with stage IV inoperable bile duct cancer. Almost qualified for a liver transplant but that darn tumor grew too much in the month after diagnosis. Anyway, they told me 3-14 months max. I’m now 32 months out. I’ve read online that less than 1% with inoperable live 2 years. Beat those odds
I’ve had radiation and FU-5 chemo for 2 months. Think it totally killed the original tumor – my opinion because it never shrank but is consistently stable. About 7-8 months later started gems/cits as a preventative for 7 cycles. About 8 months after that ended they found a new area of disease with spots on my liver so I joined a phase I clinical trial that I’ve been on since the end of last July. The spots on my liver can’t be seen. Lymph node on my spine is shrinking and spot around my stomach is shrinking. I didn’t even realize I had one on my spine.
We’ve been on 2 cruises since my diagnosis and we are leaving for another one tomorrow so I won’t be on the site for a bit.
I’ve felt good most of the time. Probably had less down time and less sick days than if I would have been able to have a Whipple. We are all different.
Don’t know what’s ahead, but my trust is in God. He is directing my path and will take me “home” when it’s time.
And yes, I do eat 3-4 stalks of asparagus twice a day. Well, I’m actually on an asparagus break right now (like a chemo break ) but I plan on starting back up after the cruise. I sort of call it my probably false internet cure Never know, though.
Have a great week! I plan on it.
Kathy
March 24, 2012 at 3:27 am #59220peggypMemberHi Jeff,
No, you didn’t respond to me; I feel so slighted. Ha! Ha! You have added a little something different to this site. I believe someone called it spice. Keep writing as I think you have gained a lot of fans. Oops-got to run; 14-year old just called that the bus is close to school. She had softball game out of town. Will catch up with you later. Hugs, PeggyP
March 24, 2012 at 3:05 am #59219marionsModeratorJeff…it is well worth the trouble. You may copy your previous postings and then paste on to the blog site. You can do it, Jeff. It is a wonderful way of expressing your thoughts without having to worry about keeping postings to a limited size. Please, give it a try.
Hugs,
MarionMarch 24, 2012 at 2:24 am #59218ccactive123SpectatorMarions,
Thanks. The first step is how do I gather all my writings so far? I will get them, transfer to Word and then have one file that can’t get lost. I had no idea this site would educe so much from me.
Between my cc, my absurd HOA and other insane aspects of my life, I should get this stuff down before I go out.
I appreciate Eli getting my photo up. It’s actually my cousin Bill at age 24 but who can tell? (I love to lie and tease).
Jeff
March 23, 2012 at 11:37 pm #59217marionsModeratorJeff…I agree with Julia. You should write a blog. This would assure for your postings not to be lost in the threads.
Already Julia has given excellent instructions however, please do not hesitate to ask for help if so needed.
Looking forward to reading your brand new blog.
Hugs,
MarionMarch 23, 2012 at 9:48 pm #59216lalupesSpectatorJeff, your story is absolutely riveting and so well expressed. I feel you’re walking us along your path, pointing out interesting views along the way. I’m looking forward to the next instalment, the way Dickens’ readers must have felt when his stories were published in bite-sized pieces.
Do you blog??
My wonderful CCF family recommended I start a blog when I was bouncing off the walls in August ’09. I don’t do much detail, as it’s not limited to readers who know anything about (or would wish to cope with knowing any details of) CC, but you’ll find the link (called “website”) at the bottom of the left-hand pane, below my name, photo and number of posts.
There’s also a forum towards the bottom of the Main Discussion Board Menu, in the “External Links” section, called “Blogs”, where members put links to their blogs. If you wish to know more about your new CC Family’s stories, you’ll find many there.
I look forward to reading more.
Take care
JuliaMarch 23, 2012 at 8:33 pm #59215ccactive123SpectatorRe: 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
March 23, 2012 at 7:13 pm #59214ccactive123SpectatorHi Lainy
Well, that’s a good word for Hoffman’s.
As for chemo, my dad had small cell epithelial bronchogenic carcinoma in 1973. He took 3 courses of methotrexate which wiped him out. Turns out survival is 6 months WITH OR WITHOUT TREATMENT more or less, so why the hell treat? My second stepdad Don was about to go on a cruise to Alaska with my mom and the day before some imaging showed something in his lung. A verbally aggressive surgeon convinced him to go under the knife and then follow up with chemo. First, I think you don’t resect lung tumors often as that breaks the protective layering of things. He stayed alive but very ill until death. In retrospect all agree he should have boarded the boat, done the 6 weeks travelling and feeling good, then once home treated for recovery, cure, palliation or whatever. But what he did do was get cut on day one and then was miserable every day after. Only the medical community can’t find a problem with this.
Today chemo is much lighter doses over more sessions and better, but I’m still deeply mistrustful. Docs tend to focus on the tumor and lose sight of the person. I don’t want to live a tumor-centered life, I want to live a me-centered one with the human I am in the bulls-eye, not off to the side. Getting a straight or consistent answer about outcomes and side-effects can be near impossible, deepening my mistrust. In math, 2+2=4 all over the world, commie or capitalist, black or white, tall or short, etc. But other things are open to who said it, what they are getting out of it, who may be offended or pleased by it and lots of other polluting and confounding factors. To chemo or not is often very hard to decide and feel a good, solid decision was made. It should be much, much better than that.
Check out http://physicianswholisten.blogspot.com/2011/06/will-asparagus-cure-cancer.html for this guy’s argument that asparagus is THE answer. I find it rather convincing as it can’t hurt and tastes good; who can say that about methotrexate?
Jeff
March 23, 2012 at 6:54 pm #59213ccactive123SpectatorHi 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
March 23, 2012 at 6:50 pm #59212ccactive123SpectatorHi Lainy
When I send, there’s a sort of new page with little on it but what I sent and what I’m responding to. I like old-fashioned books where every page and tome is tangible and visible and I can hardly get lost. The multi-screen world is flummoxing to me. I recall when electronic devices had buttons where any button did just one thing. Now there are devices with 1000000 commands and three buttons. You hold down #1 (but not too hard), tap #2 while singing to #3 (and better be on key) and then…it drives me crazy.
I wanted to go home sooner but realized entering a pressurized container (airplane) might open the wound. Then what? They won’t turn the plane around. I didn’t want anyone fiddling with Dr. Carlos’ brilliant work. So I stayed until all tubes were out and he cleared me for air travel. As for Teddy’s story- yikes! That’s exactly what I wanted to avoid. What if there were no nurses? What if the plane over or under pressurized?
By the way, after the Whipple for some while I smelled of pancreas (I think that’s what the odor was) and I hated it. It permeated everything. It is so repellant, how do surgeons take it? My wound stunk, my breath, my belches, my skin- it seemed to be everywhere. I was so glad when it went away. Lesson #1 in med school my godson the great doc said was, “Don’t f**k with the pancreas” meaning don’t even touch it or get near it. Whipple guys (and my guy in particular) cut it, carve it, burn it, and know what they are doing. I sure respect their work, but had I become a doctor (which I once wanted to do), I was headed for dermatology, everything out in the open, visible, and except for melanoma and a few other baddies, hardly ever deadly.
Jeff
-
AuthorPosts
- The forum ‘General Discussion’ is closed to new topics and replies.