Re: Unusual Cholangio Guy - Survivor Against the Odds

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

52 (edited by Lalupes Fri, 23 Mar 2012 15:51:00)

Re: Unusual Cholangio Guy - Survivor Against the Odds

Jeff, 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
Julia smile

"Time may be a great healer, but it's a lousy beautician."

Re: Unusual Cholangio Guy - Survivor Against the Odds

Jeff...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,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Unusual Cholangio Guy - Survivor Against the Odds

Marions,

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

Re: Unusual Cholangio Guy - Survivor Against the Odds

Jeff...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,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Unusual Cholangio Guy - Survivor Against the Odds

Hi 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

Re: Unusual Cholangio Guy - Survivor Against the Odds

Jeff,

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 smile

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 smile ) but I plan on starting back up after the cruise.  I sort of call it my probably false internet cure smile  Never know, though.

Have a great week!  I plan on it.

Kathy

Re: Unusual Cholangio Guy - Survivor Against the Odds

Marions,

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

Re: 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: Unusual Cholangio Guy - Survivor Against the Odds

Hi 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

Re: Unusual Cholangio Guy - Survivor Against the Odds

Jeff!!

About asparagus. You wrote:

"Check out http://physicianswholisten.blogspot.ca/ … ancer.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.

<snip>

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.

<snip>

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,
Eli

Re: Unusual Cholangio Guy - Survivor Against the Odds

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

Re: Unusual Cholangio Guy - Survivor Against the Odds

Eli

I just scanned that article and must have been drunk the first time I read it.  It's really hard to interpret that piece as saying that asparagus is good for cancer when the article is mostly debunking that very claim.  I tried reading it super fast, with bad glasses, smoking crack- but no matter what I did I could not see how I came up with my fist (and erroneous) impression.  Very odd.  I think it may have been the post-Whipple mental infirmity that dogged me for a long time after the procedure. 

Glad I brought it up and gladder you set me straight.  Thanks again. 

Jeff

Re: Unusual Cholangio Guy - Survivor Against the Odds

Da*n, I was just about to invest in an asparagus farm ... sad

"Time may be a great healer, but it's a lousy beautician."

Re: Unusual Cholangio Guy - Survivor Against the Odds

To All Asparagus lover's I read what Eli saw. But, I still love the green stuff. I guess the bottom line is what ever one thinks may work for them. My daughter's boyfriend has Lymphoma and shortly after diagnosis 3 years ago he went to a naturopathic person. He spent about 50,000 on Vitamin C IV's and went all organic. Well, about 6 months ago he got a secondary Lymphoma along with the return of the first.  He goes in for a bone marrow test next week. Guess this has made me not believe in what Science has not proven.
I have a NEW QUESTION, WHAT ARE ALL THESE 4 LETTER WORDS WITH STARS IN THEM?  MMMMMM

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Unusual Cholangio Guy - Survivor Against the Odds

*** whistles innocently ***

What stars, Lainy??

"Time may be a great healer, but it's a lousy beautician."

Re: Unusual Cholangio Guy - Survivor Against the Odds

OOPS, Julia, must be the stars in my eyes***********************

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Unusual Cholangio Guy - Survivor Against the Odds

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

Re: Unusual Cholangio Guy - Survivor Against the Odds

Jeff,  there's a board section here called "Surgery, Resection & Transplant Treatment Options"

Discussions involving the various surgical techniques.

I'm not sure how a Whipple may differ from a resection, which I've had, but there's lots of both around here.  No need to feel alone.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Unusual Cholangio Guy - Survivor Against the Odds

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

Re: Unusual Cholangio Guy - Survivor Against the Odds

Hi,Eli

"Being the diligent researcher that I am,--- "  ; so Eli,

You ,as always, will continue to be one of this web site valuable asset;

Thanks for your contribution,and make sure you take good care of your wife FIRST.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Unusual Cholangio Guy - Survivor Against the Odds

Jeff,
Welcome to the family! As you've readily found, this forum has room for a lot of different approaches to living your life after diagnosis. My approach is somewhat like yours. It's not supprising I suppose that cancer (particularly one like CC) tends to bring clarity and focus. A lot of stuff that at one time seemed so darned important fades into it's proper place. It appears that your "stuff" has done just that. Keep at it my friend...

God Bless!

bob

Re: Unusual Cholangio Guy - Survivor Against the Odds

Bob, OMGOSH! Good to see you! I was thinking about you and Donna  the other day and wondering how you are doing? How time flies when life gets in the way!
I am moving May 1st to an apartment and am entirely stoked. If you know where San Tan Mall is, I am right across the street and about 8 minutes from my daughter.
No wise cracks...I am not even a shopper BUT that is where it is. I so hope you are doing well and guess you will be heading to your 'other' home soon. Love to you both. By the way, to our newbies, this man, this man right here, is our longest fighting Hero on Board with CC. I know it's 14 or 15 years! So take that one CC!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Unusual Cholangio Guy - Survivor Against the Odds

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

Re: Unusual Cholangio Guy - Survivor Against the Odds

Bob

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