(6 replies, posted in General Discussion)

Hi Judy M,

Thanks.  I would contact Cedars Sinai Oncology or write direct to my group, now under them, Tower Oncology on Wilshire Blvd.  Let me know if I can be of further help. 

Best, Jeff



(6 replies, posted in General Discussion)

Hi All,

Since I continue to show greater ability to handle cancer than computers, this post may wind up anywhere or even nowhere.  I hope it's visible and helpful or at least amusing. 

As she said in the movie Poltergeist, "He's back". 

                                           BEASTIE COMES BACK

    I think it’s coming to get me- but slowly.  Isn’t that how it is for us all?  My test results are unclear but suggest the progress of cancer somewhere within me.  For details, read on: 

    The 0.9 mass in Jan was 1.1 cm. in April, a slight but measurable growth in size.  Many additional scattered nodules have appeared.  In general, a large body growing and new small ones is the worst progression.  But none of the nodules was PET positive (took up glucose and thus showed high metabolic activity associated with fast-growing cancers) and the 1.1 only took up 1.6 SUV (you’d expect at least a 7.0), so the 1.1 might just be a post-surgical inflammation.  SUV=3 was found in the area of the clips from the gallbladder removal 2.5 years ago, so there might be cancer there. 

    It seems like it’s somewhere as the CA 19-9 (119 before the Whipple, then 4-11 thereafter) has had successive upticks and now reads 36 (the standard is you always want to be below 37).  I could get an endoscopic ultrasound to explore those SUV 3 masses near the clips.  I’m not sure about the 1.1 in my upper left lung lobe as it’s a long way in, either around the scapula or pec, and getting a chunk out for good diagnosis would require the large needle that often creates serious lung crises, like a pneumothorax. 

    Ideally, one desires tests that, a) Tell a lot and hurt very little.  Tests that, b) Maim and don’t advance knowledge I would like to avoid.  Those two liver biopsies I had?  They were b’s.  Even if some one mass is cancer positive, how fast is it progressing?  If a procedure is done, does it buy me more time?  How much?  At what cost?  How do I feel during that time? 

    Right now I am symptom-free and strong.  My gut is fragile but OK.  Since the pancreas continues to shrink after a Whipple, I think it’s now so small it can’t produce sufficient insulin.  My blood sugar is creeping up, and psychologically I now long for coffee cakes and foods I’d always hated and rejected my entire life. 

    All I really care about is how I feel.  Right now it’s good.  To review my definitions, they are:

1.    Regular life: What we do all the time without thinking
2.    Good time: Begins when you learn you have a fatal condition.  During this period, you feel great
3.    Medium time: Begins when you start to feel the effects of your disease, but you can still function OK
4.    Bad time: You feel terrible and can’t do much
5.    Death: No need to explain

    I guess I am at the start of #2 above.  I want this time to last as long as possible but can’t assist.  Just how long I get to remain in #2 is unclear.  I am concerned that treatments or even tests could push me out of #2 and into #3 or even #4, and then I would never be able to get back.  It’s a one-way, one-time mistake you never want to make.  I favor dwelling in #2 as long as possible, accommodating to #3 as best I can and racing thru #4 as quickly as possible.  The common course is for #2 to be short due to denial of morbidity and late diagnosis and for #4 to be long due to denial of mortality and to enrich the medical industry. 

    All this considered, there may be another dinner for y’all, probably at the same place.  If the first was titled Ain’t Dead Yet, this upcoming one will be yclept Way to Go, Tomorrow Never Knows or Varmint Still Wrigglin’. 

Love, Jeff  jeff@jgyoga.com

PS    Much discovered.  The Jan PET was not positive because at 0.9 the tumor was too small to light up.  The CA 19-9 of 36 means my body is reacting to the presence of cancer- but where?  The lung mass is typical of cc metastasis and the small masses at the junction of several organs near the liver is where the original cancer was.  No surgery, chemo or radiation is likely to help any of this and would make me very sick.  Even taking the endoscopic ultrasound is questionable, as results are often unclear and then they will want to start sucking out pieces with a needle or other stuff. 

    Given this, it appears the cancer has recrudesced and/or metastasized and that neither site is effectively treatable.  In no case am I curable, and it appears there is little to be gained from procedures designed to provide helpful data.  Math tells us that a 1.1 size tumor is around 37% larger than the volume of a 0.9 tumor, the amount the one lung mass increased its size in 3 months.  V=lxπr2 and V=4/3πr3.

    Right now my plans are to repeat the CA 19-9 and PET in 60-90 days and live energetically from now until then.  This moment really is the inauguration of #2.  So different from other times I’ve felt bad- injuries, diseases, hangovers- this time there will no feeling better after feeling bad.  I may have upticks, but I will be on a downslope.  I will lose energy, and it will not rebound. 

    Time to travel.  While my bad hips are an annoyance, I’ll work around them.  I’ll get to England, France and Italy soon, then go over to Thailand, a better place to be when sick than Europe.  Then I’ll come back here to die- probably. 

    I am reading “How We Die” by Neuland, a doctor who for decades was realistic about death.  Until it came to his own brother.  Then he was all too human and gave him false hope, put him through unnecessary tests, added to his suffering, etc. because he himself could not be totally clinical.  I may be having that now.  [Old friend and retired onco] Ted said within 3 sentences speaking with [my current onco] David he knew how dire my condition was and that David was sort of soft-pedaling it to and from himself because Ted says David likes me and doesn’t like this news.  David’s ideas about it being inflammation, post-surgical debris, etc. seemed to Ted to be desperate graspings.  Ted said at one point in the conversation he felt himself get emotional. 

    Outside of misplacing things and feeling a bit spaced-out, I’m the last guy on my own block to feel this within.  If and when I do, I’ll let you know.  Up to a point.  Obviously, at some time, I will feel less need and have less energy to express anything outward, so I’m loading up now.  Read it while I can write it.  Afterwards, there will be silence and peace. 

Here's the CA 19 9 chart.  5 successive upticks of increasing range are the problem.
[charts don't copy over]


(8 replies, posted in General Discussion)

Hi Lainy,

I certainly agree about multiple opinions and as much input as possible.  It can be hard to untangle what's submitted.  In my odd case, I have a very good onco and a very good internist.  I also have an old friend from college who is almost a Dr. House- when at his best, he comes up with stuff no one else does.  But it is I who have to integrate and decide, as in the end we are our own final doctor/decider. 

I had a gastric spasm today in writing class.  Grabbed baking soda and water and downed it.  Wasn't as bad as some of them, but they sure are stoppers.  I am hardly ever hungry and easily too full.  I WISH I could get the munchies.  House wants me on Ensure, but I won't get near it- too sugary.  I have my own shake I make, and I'll just have to keep sipping them all day long.   

Be well, Jeff


(8 replies, posted in General Discussion)

Has anyone had my conflicting signs?

New growths not seen 4 months earlier
But an 11 mm. body not lighting up on a PET

If new and big, it should shine, not be totally dark. 

Anyone had this?


(8 replies, posted in General Discussion)

Creon was not quite as good and I'm willing to try anything.  I know there are a few other brands, but I've not found them yet. 

If the nodules are inert, why do anything?  If they are really cc mets, there's nothing to be done.  My House-like source says my 1.1 is extremely easy to get, an outpatient procedure.  But if I learn something 4 weeks earlier it takes me 5 weeks to recover from, I've lost one week, so is that really what I want to do?


(8 replies, posted in General Discussion)

Hi Marion,

Thanks so much for your help this evening. 

A "House-like" doc I know told me the 1.1 cm. mass in lung is very easy to get to where it happens to be.  If true, I might take a sample.  He also told me how futile my two liver biopsies were, something I wish I had known before having them. 

As for the indigestion, I upped my quality of food, decreased the amount per meal and never take less than 3 Zenpep.  My stomach's smiling but my wallet's crying.  The Zenpep are around $560/mo. for 10 months/year. 


Note: Apologies for my postings being all over this site.  I cannot find my string and add to it sad but at least Marion got me to where I can say something at least.  Thnx.

January 8, 2014


Hi Everyone,

                  It’s been quite some time since I released a report, and true to the old saw, no news has been good news.  I feel great except for minor gastric woes, and my blood numbers have been exemplary.

                  Two months ago I weighed 163, an all-time high, and I felt sluggish.  So I decided to lose some weight.  Method: Eat until no longer starving, then stop eating.  It works!  I began each morning with my favorite breakfast- DuPar’s 2 rashers bacon, 2 eggs and 2 pancakes.  With 8 T. liquid butter.  I am a shameless butter addict.  Consuming all that butter with no gallbladder and a sliver of a pancreas may have asked for trouble.  Next thing I know I’m on the scale and weigh 139 and it’s just 23 days later.  I am very strong and can do gymnastic moves no one my age can.  So I lost 24 pounds in 23 days- on butter and with few internal organs that process fats.  Could that throw my metabolism into a loopty-loo?  You bet!

                  I start having symptoms of fat malabsoption, so I get a blood test.  Suddenly, I have very different numbers, all in the wrong direction.  I am inflamed and leaking liver enzymes, but the number that gets everyone’s attention is the cancer marker, CA 19-9.  It’s supposed to be below 37.  Before I went to Boston, it was 123.  After the surgery it went 12, 9, 6, 9, 11, 8, 5, 4, 7, 10, 15, 19.5.  To have these recent successive upticks that are cusping on 20 concerned me.  So I schedule a scan.  This time a PET scan.  CT scans show presence of things and PET scans show metabolic activity.

                  What scan shows what when?  Had I a PET back in September of 2011, I’d have seen the one major tumor and been able to avoid two surgeries whose anesthetics boiled my brain, the  choly-sys and the ERCP.  But you can’t PET everyone with a tummy ache, or you would approach living in a diagnostic chamber 24/7 searching for the culprit.  Even if you find him, all you did was spend time searching for him.  Many times finding him won’t help anyway.  On the other hand, we all know of those who had they only got their info- scans, blood tests, whatever- just a bit sooner, they’d be here today.  When to do what?  No one knows!

                  I got the results of the January 7th PET.  The PET part shows nothing lighting up but my bladder where the radioactive solution went after I drank it.   My gut is dark- a good thing.  The CT part showed nodules there not present four months earlier.  They are in the left lung, evenly distributed, the largest being 1.1 cm.

                  Cancer markers rising and new, fast-growing objects in the lung raise the specter of metastatic cc cancer spread to lungs years ago but too small to be seen until just now.  If that’s the case, my condition is ‘treatable’ but incurable, and time is relatively short.  I could have a surgeon pluck out (needle or full resection) one of the bodies to see exactly what it is, but just how much I give up to get how much useful information is something I’m still evaluating as I write.

                  Right now I lean towards a scan in 2-3 months.  If there are more lung spots and/or they are growing, I believe that will confirm metastatic cc, and I go Bucket right then at that point.  I believe that I will have under a year with no treatment (from today), and I want to maximize the good time at the beginning so I have as much of it as possible.

                  How would you feel if a bullet racing toward your head were 1” away?  You’d feel fine.  At the moment.  That may be me, just peachy for now but with certain irreversible doom nearing quickly.  I just don’t know.  The one thing I do know: I can easily do 10 superman pushups and 7 impossible 5 step pushups because I just did them, so for the moment I am strong and my body’s happy. 
                  I have been drafting a cancer book based on my experience, and I hope to finish it before the cancer finishes me.  Let’s see who wins the race.

Love to all,


PS   I just recall when I saw Master Wang for the first time in months, he rubbed over my left upper chest and said, “No good here.”  He never referred to that area before.  It’s where those left lung lesions are.  Spooky.


(7 replies, posted in General Discussion)

Hi Diane,
    Thanks for your reply.  Interesting that the word "dignity" comes up so early in your posting, as dignity is what usually disappears in those final weeks it seems.  One problem I think is to continue the identity between the physical body and the 'self'.  I am not religious but do have a spiritual side.  I do think there is a 'big other' and that all current religions have it wrong (though they once may have had it right at their inception).  For most of our lives, our containers and ourselves are not worth differentiating.  But at death, the empty container stays behind and the essence of the person is/goes elsewhere.  So when I’m around someone dying, I’m OK with their container deteriorating before my eyes.  I care about the person within- are they OK, suffering, need to say something or are eager to leave their container.  If I’m good to the essential person even while the container is crumbling before my eyes, I feel I’m doing all the good I can.
    Slow is right.  In 1970 when my peers were attending med school, I complained modern medical education was deficient in preventive medicine, sexuality and nutrition.  They agreed but were quick to say things were changing and that in a few years these complaints would be obsolete and moot.  They were 100% wrong. 
    As for POA, most don’t have one regarding anything, and our culture of avoiding any consideration of, discussion over, or examination of the subject of death and final things prevents us from growing out of our Medieval mindset towards life and death.  You can’t make plans about anything you aren’t even facing squarely right now.  Start with most people that death is inevitable, it’s part of life, it’s best prepared for vs. having it pop up unpreparedly, etc., and they will run away and try to never speak with you again, you SOB downer, you.  You are not helping them to prepare for something so they can face it better with the result less suffering all around- no, you are a Debby Downer bringing up unnecessarily negative topics inappropriate for polite society and should shut the f*** up.  I think individuals are smartening up regarding this, but there is no wide social movement coming up I can see.  We each must pursue an enlightened approach to this vital topic in our own way and not depend on our society to pitch in and help. 
    Finally, I heartily agree about the need to be in step with whomever your doctor is.  It’s your body, your disease, your cancer, your life- not theirs.  If they aren’t acting as your assistant, you need to find someone who will be.  I am lucky to be surrounded by medically competent and big-hearted docs, and I wish everyone had access to caregivers of their quality. 


(7 replies, posted in General Discussion)

Planning Life
    I am just going to tiptoe into a subject here and see if it arouses interest.  The subject is “The Planned Life” but maybe should be called “The Controlled Life”.  With cancer especially, a loss of control can be devastating, and all animals seek maximum control over their circumstances insofar as they are able to understand these circumstances and exercise control.  In modern times we have witnessed how control cedes from our grip in the final times, often so much so that those times are unsavory, undignified, unworthy of the human experience. 
    No one controls nothing or everything.  Some things we must control and some things are beyond our control.  How about life’s end?  As it is now, almost all of us skitter toward the end controlled by whatever our medical circumstances are, where those in charge are often obsessed with the physical body no matter how moribund yet oblivious to the inner being of the person which is where they really are.  It’s like keeping the fish tank intact but letting the fish suffer and die and imagining yourself an accomplished marine biologist.  When I see someone kept alive on life support machines who dies in weeks anyway, I wonder how they were feeling.  OK?  In pain?  Happy to be alive under any condition?  Ready to go and/or annoyed at being kept around?  If they were in control, what would they do?
    Over the last few decades awareness has increased, so things don’t just go the way they go and have always gone.  The recent introduction of DNR’s, living wills and the like indicated people are increasingly willing to face the unpalatable and inevitable.  They are taking some control of how much and what kind of medical intervention they are will to undergo.  In the coming years, I see this as going much further.  No one really wants to last a very long time only to eke out their final times in an institution, that while euphemized as Convalescent, Nursing or Senior, is all too often really a House of Degeneration, Neglect and Death.
    Let’s say you knew you would be healthy until 50, then you would have agonizing, untreatable illness.  Some would plan it out and spend all their money and cross off as many bucket list items as possible, then drop dead one day before they turned 50.  Who would condemn or blame them? 
    The one thing I don’t like: Just going along the way it is, get sick, get sucked into the medical/insurance vortex, swirl and around and get banged up, probably sicken and die anyway as abused in treatment as you were by the disorder.  It’s great for some who make money off it, but it’s terrible for those who undergo it.  I want to change that. 


(6 replies, posted in General Discussion)

Hi Willow,

Thank you very much.  I have had sort of carved out for me a special spot for those who survive the unusual (it's happened to me before) and are relatively unconstrained by religion, family, tradition, small town, occupation or other limiting factors to just go ahead and say what they feel.  Why is health care so expensive?  Confusing?  Inconsistent?  Is this the best we can do?  What kind of society are we to put men on the moon but are unable or unwilling to see that the old, sick and injured are at least comfortable, informed and treated humanely?  "All politics is local"?  Well, try medicine.  It's not giant gleaming hospitals being built or slick commercials on Sunday news shows that is 'medicine', it's who you see, what you are told and how you wind up feeling when you show up at the doc's office, and it's not always so gleaming. 

Thanks for replying, Jeff


(56 replies, posted in Introductions!)


For me, CC is easier than computers (but just because I'm really lucky).  Any help you can give me would be deeply appreciated with any or all of the following:

1. I am Jeff Gold, CCActive123 and posted something today I can sometimes find.  Where is it and how do I get there?
2. Willow responded to me.  How do I respond to her? 
3. How do I check for responses to my posting so I can be timely? 
4. Is there one place to see my postings and the responses to them?  I am so lost. 

Ilya in Canada helped me a while back.  Sorry to be so stupid; I guess I was cut out for Extreme Luck instead with my CC story. 

Could you reply to my email address below as I'm too daft to find what response you might make?  Arrggh. 

5. Where would I find such a response? 

Jeff Gold


(6 replies, posted in General Discussion)

Hi One and All,

    I was recently emailed by a user of this site, who, considering my prolonged period of silence had to prod gently about my status.  With CC, you are better, the same or worse- with the same or worse not that great and better not that common.  I answered her back, not sparing her my particular brand of unreserved observations, recommendations, insights, delights, kvetches and humor about CC, cancer, medical treatment in the USA currently and life & death overall.  As perfectionist and caring guy, you can just imagine how all the errors, blunders, stupidity, rigidity and mess-ups drive me crazy.  Because they hurt people. 
    My CC health is great.  On a scale of 100, I give it a 98.  My CA 19-9, 120 before the Whipple, has run 4-12 since.  My PET, CAT and MRI scans are totally clear, and they are the full series ($14,000/scan).  I have no symptoms of any kind.  Notably, I have nothing from the Whipple itself- no adhesions, inner scaring I can detect, digestive problems, or need for insulin.  Some top docs told me my Whipple is the best healing incision of that type they ever saw, and these are senior dermo’s and surgeons, so I feel very lucky.  I have a tiny bit of pulling at the scarline that is relieved with a kind of pinching massage to break up tight tissue. 
    At 66 and with a vast history of bodily adventure, I am slowly falling apart elsewhere with bone-on-bone hips, foraminal stenosis, Barrett’s Esophagus (that can develop into esophageal ca, just a notch better than cc on the cancer continuum) and varying health squawks.  I do my best to treat them according to what my body likes.  Most of us just supplicate ourselves before The Doc and do what our insurance will pay for.  Because I don’t, I vex certain docs and spend tons on alternative medicines and have to work very, very hard. 
    I am most upset with our crazed ‘health care system’ which is a series of different systems for different kinds of people, and woe betide those who are one of the ‘wrong’ kinds.  It overtakes one’s entire life in the final years as we spend so much time and money in clinics and shuffling between tests.  Historically, traditionally, we live until we die, do the best we can, pay what we can and hope insurance and the government step in.  But along come drugs at $30,000/injection and a few other things, and we find out we can run out of money before we can run out of physical life.  What are our choices? 
    I never considered this that much.  I never thought it was literally “Pay or Die”, but I believe so now.  I have wealthy friends who only worry over physical health as they have enough money.  But I also have ones who have to choose between treatment options or running totally out of money at some senior age like 75.  Who wants to old, wobbly, unemployable and flat broke?  Some are literally mapping out their remaining time and money so they enjoy quality time now and maybe chop off the messy last years when they might become little more than medical specimens racing from one doctor or hospital to another while inevitably on the way down no matter what they are doing.   
    For me this is especially troubling.  I had hoped to retire and do OK in a modest way during my final years.  But I still need to work at 66.  Medicare would have been great had I been on it when I got CC and had the Whipple, so I didn’t have to shell out that extra $122,000 this cancer cost me out of pocket.  My pancreatic enzyme is around $475/mo. even on the Medicare supplement drug plan.  I can run up $500-3000 in alternative medical expenses/mo. without blinking.  If I cut back on these, I fear I am compromising my health.  If I don’t, I fear running out of money.  I can almost see a cartoon panel of me in a few years exulting over ‘beating cancer’ as they wheel me into a dilapidated nursing home nestled in a slum neighborhood where the streets teem with packs of wild dogs and carjackings.  “Cancer couldn’t get him, but the economics of the current US healthcare system could- and did”, I don’t want my epitaph to read, but I could be heading in that direction. 
    So, I remain around, obstreperous and cantankerous as ever, wishing things to be better, certainly for CC patients, and willing to work toward anything that helps.  Anyone is free to write me on this site or at Jeff@JGYoga.com. 

Jeff Gold


(4 replies, posted in General Discussion)

Hi Julia and My Mom-

Thanks for your replies.  I haven't yet started the blog and feel I need a kickstart to know how to begin, where to go, etc.  I can think, speak and type, but I'm a dufus with computers often and quite medieval.  I'd be looking for my laptop atop King Arthur's Round Table I'm often so far behind. 

My body really loves New Zealand lamb, kale salad and cabbage salad which I eat almost daily.  The mystery Chinese powder my relatives swear kept me alive had its maker arrested by the authorites, and he's been spirited away to parts unknown, but I still have months of it left in my frig. 

My weight, 126 post-Whipple, is back up to 148 now as it was pre-Whipple.  I am about as muscular as I was then minus 10-15% which is important as this bad toe/foot/hip often wakes me up at night with pain and I need be strong everywhere else to not limp around.  Funny thing is I never take pain drugs, and my closet is loaded with them.  I just don't want to.  I hate being groggy from drugs.  If I never mentioned it, I can go to sleep quickly (if the room is quiet and warm) and when I wake, no matter when or how deep the sleep, it's 100% awake instantly.  My voice, eyes and thoughts are all fully wakeful as though I've been up for hours.  No one knows why, but it would have come in handy as a doc or field general. 

I wish you all well, and may we all recover and stay healthy!



(4 replies, posted in General Discussion)

I hope I am posting this in the right place.  I have trouble finding where K'm supposed to be and feel a bit lost most of the time.  Below is what I wrote to my tiny circle of family and friends after my latest scan.  Anyone is LA is enthusiastically invited to my next party.  Come one, come all.  May we all get better and wake up knwoing this was just a terrible dream we had. 

April 12, 2012

Hello Everyone,

Well, to put in brief, I’m destined to live (for a while at least).  As referenced in a few of the last emails, last Friday I had an MRI series of pelvis and abdomen lasting around 4 hours, with and without contrast.  The results are completely “negative”.  So there are no changes at all.  So of the months since the Whipple and the resection of the main tumor, I am at month 5.5.  The goal is to get out to month 24 after which the chances of recurrence drop to 20%.  I found a cholangio group online which covers a lot of the Western world.  I’ve exchanged emails from North America, the UK and elsewhere.  In it all of us are cc.  I am ECCT3 or extrahepatic cc, stage T3.  There is only one other person with this designation, a woman in Canada.  She is taking treatment, and as you know, I am not (except for my weird regimen of Chinese doctors and herbs, AK, exercise, mixed diet, xi gong, etc.).  There are others such as ICC or T2 and below, all better conditions, and many of those are faring worse than I.  So for the advanced and deadly form of cancer I have, I am doing really great.  There’s no question how extreme ECCT3 is or how healthy I am with daily gym, diving, swimming, yoga, Pilates and what else.  I am so far away from the center of the bell curve, I am off the page. 

Funny things result.  At the oncology center I go to for my doc, a woman remarked that “at least you haven’t lost your hair”, speaking from under a large hat.  I haven’t because I haven’t taken any chemo or radio, unlike basically everyone there.  I realized I am unlike most at the onco office.  If you are before cancer, haven’t had it, you don’t need to be there.  If you are after and are dead, you can’t be there.  The only people there are during with most of those treating. I’m just bounding in for blood tests and occasional consults, but am as different from most patients there in approach and mood as night is from day. 

Another one is when docs hear of my cancer and ask, with their face seriously darkening, “And what medications are you on now?”  They take out a giant clipboard and prepare for 20 minutes of note taking.  I say I take Prevacid for acid reflux and pancreatic enzyme Zenpep to digest fats.  And that’s it.  “That’s it?” they ask incredulously.  Then they look lost as if they don’t know what to do.  When it comes to where I say how I’m not treating and why, they usually tell me in lowered tones that’s what they would do too.  But are they telling me the truth or shining me on?

So now it’s hammering at this rock of voice work where I have the right voice but no training in acting so I still can’t get work.  I have a home studio of a mike in a Styrofoam box and free software I use to make and submit recordings.  Eventually I will get better and get work.  A friend has invited me to Cabo next week and I will take my mike along with me to respond to auditions.  I found a Pilates studio down there so I can unkink my bad hip and not have my back lock up. 

So here we are- I got the big, bad cancer but it doesn’t have me.  I’d like to get out to month #24 and beyond and get work, but just being alive, and more importantly well and active, I feel like I’ve won the Life & Health Lottery Big Ticket. 

In a couple of months if this is still the case, expect to be invited to a “spam off, cancer!” party, a more aggressively positioned version of my “Ain’t Dead Yet” party 3 months ago.  More parties, less infirmity, more activity, less apprehension- that’s the way I like it, I think the way we all like it, for ourselves and those we care about. 

So, in that vein, I hope to be writing these bulletins centuries into the future with love, as



(3 replies, posted in General Discussion)

I am heartened to read of good news on this site such as Matt's wife's successful surgery. 

Tomorrow I have an MRI with and without contrast.  If it's unchanged, I am good for now.  If there are changes, the cc is coming back to get me and I'll find out how long my doc says I have since I am a non-treater. 

I was scheduled for a CAT but wondered whether radiation from that test was really advisable.  My onco told me an MRI is just as good with the only risk being the gadolinium's effect on the kidneys.  Since my kidneys are healthy, I changed from the CAT with and without contrast to the MRI with and without contrast.  It's a full abdomen and pelvis, so it's 1-1.5 hours of loud, banging noise and confinement withing the MRI tube. 

Next month I turn 65 and go on Medicare, so my medical costs go way down, and am ever glad!  My pancreatic enzymes were running me $350/mo. and now will decrease to $81.  In 2 weeks I go to Mexico for warm water and sand and look forward to doing little to nothing, something very chanllenging for my Type A/Type T personality. 

May the scourge of cc be wiped from the face of the planet and all of us playing golf, on the high-dive or doing whatever it is we like to do without cc, I remain, yours,

Jeff G


(12 replies, posted in General Discussion)

Test Without Study

I am heartened to read of good news on this site such as Matt's wife's successful surgery. 

Tomorrow I have an MRI with and without contrast.  If it's unchanged, I am good for now.  If there are changes, the cc is coming back to get me and I'll find out how long my doc says I have since I am a non-treater. 

I was scheduled for a CAT but wondered whether radiation from that test was really advisable.  My onco told me an MRI is just as good with the only risk being the gadolinium's effect on the kidneys.  Since my kidneys are healthy, I changed from the CAT with and without contrast to the MRI with and without contrast.  It's a full abdomen and pelvis, so it's 1-1.5 hours of loud, banging noise and confinement withing the MRI tube. 

Next month I turn 65 and go on Medicare, so my medical costs go way down, and am ever glad!  My pancreatic enzymes were running me $350/mo. and now will decrease to $81.  In 2 weeks I go to Mexico for warm water and sand and look forward to doing little to nothing, something very chanllenging for my Type A/Type T personality. 

May the scourge of cc be wiped from the face of the planet and all of us playing golf, on the high-dive or doing whatever it is we like to do without cc, I remain, yours,

Jeff G

Hi Eli,
I followed your instructions and now have all my posts in Word over 34 pp.  Sometimes what others wrote to me are there, and this can be good as my posts often reply to what someone else wrote me, so it brings context to the string.  Now I have to reformat somewhat to take out the gray background and eliminate the headers or titles or whatever they are called.  From now on I should do the primary writing in Word and transfer over to the cc site. 

You are right about earthquakes and while LA might be famed for them, we are infamed for our unpreparedness.  When it hits, there will be terrible consequences of government sloth, personal laziness, ignorance, delusion, selfishness and more.  I am among those who fear social disorganization the most.  After a few days without flushing toilets, fresh water and electricity, many of LA’s heavily armed denizens will go berserk and run riot over the landscape.  I’ve lived through all of them so far and treated them like amusement park rides as I was young, in good shape, a trained acrobat and fun-seeker.  No one around me was injured or killed and things got back to normal quickly.  The Big One won’t be that way, and while I hope it occurs when I’m not here, I fear for my relatives and other good people who will fare poorly. 

Best, Jeff

Lainy and Bob,

15 years?  That would seem to be rare.  I found out early that cc is so rare that good stats are hard come by and unreliable.  Some friends have chided me for trying to look at stats with "Just live your life!" and their point is well taken and intended, but still I like to know where I am as much as possible. 

Is it true that in general survival is under 50% for 3 years?  And it depends on so many factors, the T, R, N, where it was found, its size, how far from other structures, etc.? 

I think by the time someone is 7 or more years out, they will probably die of something other than cc, right?  "Remission" has become an increasingly fuzzy word in my mind, seeming to mean "We don't see it now" but "It could come back any moment." 

To what would you ascribe your long 15 years since diagnosis?  What did you do for how long and how did you feel?  How has the field of cc changed over your 15 years in it?

It's great to hear from a Major cc Veteran.  Anything you have to say is much appreciated here.

Best, Jeff


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. 


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. 


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. 


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,



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. 



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. 


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