ccactive123
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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
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 explainI 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]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
Has anyone had my conflicting signs?
New growths not seen 4 months earlier
But an 11 mm. body not lighting up on a PETIf new and big, it should shine, not be totally dark.
Anyone had this?
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?
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.
Hugs,
JeffHi 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.
Jeff
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.
JeffHi 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
Help!
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
Jeff@JGYoga.comHi 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!
Jeff
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
