Re: Unusual Cholangio Guy - Survivor Against the Odds

Smarties,

Who knows how I can add my photo to my signature?  I promise to keep all impressive yoga photos out of it (for a while at least).

Jeff

27 (edited by eli Thu, 22 Mar 2012 21:35:06)

Re: Unusual Cholangio Guy - Survivor Against the Odds

Click on Profile in the green outline near the top of the page.
Click Avatar in the second green outline.
Upload photo file.

ADDED:

The maximum image size allowed is 60x60 pixels and 10,240 bytes (10 KB).

Re: Unusual Cholangio Guy - Survivor Against the Odds

Smarties,

Who knows how I can add my photo to my signature?  I promise to keep all impressive yoga photos out of it (for a while at least).

Jeff

Re: Unusual Cholangio Guy - Survivor Against the Odds

Thanks Eli

My 2 photos are 1.2 MB and 330 KB.  Any idea on how to reduce them to acceptable size? 

Jeff

Re: Unusual Cholangio Guy - Survivor Against the Odds

Hi Gavin,

I appreciate your liking my writing style and sense of humor; writing and humor are giving life depth of meaning and may even help save it.  To be glum and shut-down would be further insult and likely deadly.  Bad jokes seem somehow great in some other terms later on.  Good jokes fade away more quickly having done their work at the time. 

I have to admit the posts from the UK and related areas are extremely delightful.  There is an appreciation of English language and other civilized things often absent here in the USA.  For decades, I felt I belonged in Western Europe more than here.  You should hear what our nutso pundits say about Western Europe!  They decry it, you live it, and I love it.  Hope to get there sooner than later.   

Jeff

PS  Now I see why there are two pages; one follows the other.  Nice to be growing again; here I thought my last growth spurt was at 16!  Thanks for everyone for answering technical questions.  I'll be sure to have more.

31 (edited by eli Thu, 22 Mar 2012 21:59:59)

Re: Unusual Cholangio Guy - Survivor Against the Odds

In Windows 7:

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

In Windows XP:

You will need image editing software. I like this one:

http://www.irfanview.com/

Picasa might work as well. I don't have it installed on this computer, so I can't check.

Mac... no idea. Not a Mac guy.

BTW, you can only use one image in your signature. If you want to share more than one, upload your images to a hosting server, such as Google Docs or Picasa Web Albums. Then put image links in your messages.

Re: Unusual Cholangio Guy - Survivor Against the Odds

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.”

Jeff, I just realized we didn't answer this query so I will try my best. We do have 3 Topics on our Home page where the Passing of someone can be posted. Honestly, I feel that after going through months to years of Caretaking that when a loved one passes the Caretaker is so spent that usually just a smaller notice takes place. So, many previous posts have been given on the patient that to go over and over the whole story just to give the message that their loved one has passed is very hard. We have many posts also stating how well others are doing. The biggest thing we have is HOPE and to belabor the Passing serves no purpose. We love words like surgery, chemo and trials as it means someone has been given HOPE. By the way we have a wonderful man, Bob who I believe is in his 14th year post surgery! It is also normal on our Board to see Caretakers withdraw for a while after traveling through this terrible journey. If you start reading some of the posts you will see we have many who update us on their marathons, like Maria in Sweden and most all do let us know how they are progressing or not.

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

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

Re: Unusual Cholangio Guy - Survivor Against the Odds

To all: I am so inept with computers I have sort of lost my way around this site.  I think I just posted something thrice asking how to post a facial photo.  Sorry.  So I don’t have to scroll up and down like mad, I am copying the incoming messages to Word and then responding and then copying back over to the site.  After the Whipple, I could not have found the right keys on the keyboard I was so scrambled. 

Now, about the message from Randi earlier- There should be a room where we Whipplers meet, a condition all its own.  Hope yours was OK (they can never be great).  The dreams I had in the first week after?  Wow.  Name me a more invasive, destructive surgery.  I have this diagram of it I got at Harvard Med.  When I show it to someone, their eyes dance and spin and buzz they are so taken.  It’s actually fun to watch.  Only for those with strong constitutions. 

To Pam- thank you for your kind and sweet words.  A distant friend was DX with brain cancer and began treatment.  His wife says all he does is sleep.  The docs are happy with his ‘progress’.  I’m confused.  If he gets better, fine; if he stays in bed 100 years and then dies, what was good about this? 

You know that scenario of: What if an asteroid were to hit Planet Earth in an hour or a day or 10 minutes, what would you do with the time you have left?  We all live that anyway, but we ccer’s really live it close up and personal.   I’d do many of the things I do anyway but with a kind of full-out, nothing left to lose gusto, and that’s what I do. 

I guessed your daughter here is the cc and not you.  That’s a special condition all its own, a very tough one.  It’s devastating for parents to see their adult kids sick, goes against this feeling we are always their protectors and somehow should be doing more.  If I die and meet god, believe me, I have plenty of questions.  I don’t need a written list; I’m thinking about them all the time. 

Best to you,

Jeff

Re: Unusual Cholangio Guy - Survivor Against the Odds

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

Re: Unusual Cholangio Guy - Survivor Against the Odds

Jeff, you are doing fine on the computer! Let's see if I can do as well. If you go to user above and click and then go to the User sight and type in Lainy my user name my profile will appear and it will ask you if you want to go to my e mail. 
Funny, you mentioned a Whipple gone bad, as Teddy had a Whipple that was aborted after 4 hours as the Surgeon needed to cut the head of the Pancreas and it had been destroyed by a leakage of dye from a test. So, he closed him up, sent him home for 3 weeks so the Pancreas could heal and then did the real deal with success and clean margins. We had been visiting our kids in Milwaukee and our 2 week visit turned in to 3 months. I think you said you flew home from Boston? Well Teddy had 2 external tubes in yet and we finally flew home to Phoenix. We were 45 minutes from PHX and both tubes blew out on the plane. What a mess! So there were 2 nurses on board who stripped him down and wrapped him in airplane blankets. I told them to call an ambulance and I would take him to the hospital to have tubes put back in. My daughter met us there and as Teddy came rolling through the doors on the gurney he said to her, "Did ya ever see the movie airplane?" Oh the stories we all can tell!

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

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

Re: Unusual Cholangio Guy - Survivor Against the Odds

Jeff, sorry to butt in here but...I had my own rare cancer and I was turned down for a PET and found there are places that do only PETs  and they can run from 1,600.00 to 2,000. I was just going to make an appointment when my ONC went to bat for me and the Insurance company came through. Many times the ONC just has to fight a little and the Insurance will comply.

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

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

Re: Unusual Cholangio Guy - Survivor Against the Odds

Peggy,

I hope I wrote you back.  I found a fragment with "Dear Peggy" and have no idea what it is. 

Did I write you? 

Jeff

Re: Unusual Cholangio Guy - Survivor Against the Odds

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

Re: Unusual Cholangio Guy - Survivor Against the Odds

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

it's 34.2 KB and looks like an ant on a garage door.  This can't be right.  I'll try again tomorrow.

Re: Unusual Cholangio Guy - Survivor Against the Odds

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

Re: Unusual Cholangio Guy - Survivor Against the Odds

Jeff,

I think you are looking at the date you registered for this site. The day you post is shown right above your post. Hope this helps.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: 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

Re: Unusual Cholangio Guy - Survivor Against the Odds

Pam- You're right about the date.  Thanks for that info.  Jeff

Re: Unusual Cholangio Guy - Survivor Against the Odds

Good-Day, Jeff. First of all I have to LOVE your ONC as my maiden name was Hoffman! To chemo or not to chemo is probably our biggest debate on this site. After Teddy's Whipple we saw 4 different Docs (Oncs and Radmen) and all 4 said no to chemo. He had clear margins and they felt the chemo was just not going to do anything for him, but I am also going back 6 years ago. When we were given the final prognosis June of 2010 they suggested Palliative chemo and Teddy asked how much time it would buy him and when told about a month he opted for quality time.
It is such a personal decision and there is no right or wrong as we really don't have any answers. OMGOSH! I love asparagus! Especially roasted.

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

Hi 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

Re: Unusual Cholangio Guy - Survivor Against the Odds

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

Re: Unusual Cholangio Guy - Survivor Against the Odds

Hi 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 … 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? 

Jeff