I had wondered a bit to myself just what might be of interest to post here, and the days went by with no answers. Most of my public musing about politics or society or art seem to fit better in a discussion, like that at http://www.cinemaelectronica.com, where whether it actually happens much or not, there is at least the semblance of a discussion, or give and take, which somehow makes it more interesting and engaging, at least for me. [Given usual net forum behavior – or for that matter most settings for public discourse – it is obvious this is a minority view: in nearly any setting those who speak and those who keep silent are clearly two differing kinds, with many more of the latter than the former.]
Anyway last week circumstances shifted, and dropped a topic in my lap maybe suitable for this setting where the functional given is that it is a monologue. I’ll still have to find a voice for this way of speaking, but for the moment here’s a letter sent out to a long list of friends and acquaintances, to let them know first:
I’ve been too busy of late to get around to finishing a shared letter with news and thoughts from here – it got started but now seems to have cobwebs. Anyway for closer friends a bit before I get around to finishing up the longer one. I hope you won’t mind me bunching this up for you – I’d prefer writing individually, but time is scarce, and for this I certainly wouldn’t want to write it all repeatedly in happy variants. Briefly, the other week, thanks to a thing Yonsei does – free exams for professors at the University hospital, reputed to be Korea’s best – I went for a thorough medical exam which by and large said all’s OK (cholesterol a little high, blood pressure a little high, otherwise all normal or better). With one little glitch, one not unexpected on my part as my mother had and died therefrom: an ecographic scan turned up a little something – a “nodule” in my pancreas. A consultation with doctor A went on to specialist B, who this morning confirmed what I’d pretty much already figured out from data so far, which is that the odds of this being cancerous are a bit high (20% higher than statistical norm thanks to genetic bequest from family, and given size etc., 50-60% chance it is not benign). Whatever it is, benign or mean (!), it is in early stages since it hasn’t caused any readings to alter of things that would tilt if it were metastasizing along. Tomorrow I go for a scan, and on Thursday get the info, and if I have my way, I’ll say let’s just do the biopsy and cut it out at the same time, a nice thing or not (since we kind know if it is nice now it might not be later). My guess is this is the way it’ll go except they’ll likely want to separate biopsy (endoscopic), and the other part later. The location of the whatever-it-is is not in the head of the pancreas, which we’re told makes for a much simpler and easy operation. I’d just as soon get it over and back on my feet in time for next term, starting in March. Doctor today said recovery is about a month. I’m otherwise in rather good shape, so I hope it’ll be shorter. So, if things are as they seem, and go this way, we’ll be slowed down here a month. If it is not benign I guess some chemotherapy would also ensue. Well, most my hair is gone anyway!
Anyway that’s the hot news from here. Marcella is taking it very well, and while our philosophy muscles have had a nice little workout, we’re feeling fine. In the last few years I have found myself wise-cracking, as is my habit, that at this age the next grand adventure is decrepitude and death, and lo and behold. So much for wise-cracks, now the reality. Aside from philosophy muscles, the rest are getting a nice daily workout too: we both swim vigorously for half an hour a day (nighttimes of late), do some exercises (me 80 pushups, 60 toe-touches, 60 squats), walk a lot. The cranium side is busy all day working at the computers, finishing up new film, PARABLE, shot in Lincoln area last spring – maybe it goes to Berlin fest (will hear latest tomorrow); OVER HERE premieres in Rotterdam festival in a few weeks. Was going to go if both were in fests, but not now, needless to say. Otherwise university and living in Seoul going well for both of us. Lots of other things to tell, but later.
Best to you. No maudlin sentiments please – not looking for them. Just wanted to pass along the word. I’ll update once we’ve found out more and perhaps gone through the whole process. The lay-back recuperate period should give me time to finish up that damned shared-letter update.
jon and marcella
So this would seem an appropriate topic for solitary rumination that might be of interest. As Marcella and I think to make some kind of work of this, here is a tentative opening commentary written this afternoon:
It arrived more or less by accident. The whole thing. I’d gone to Seoul for a festival, and casually dropped word with my host that should there be interest, I’d be game for a job teaching. Seo Hyun-suk, now my friend, took it up and I found myself a year later in my first real paid job – at the age of 64, due for mandatory retirement a year later. Marcella and I moved to Seoul in August of 2007 where anointed me a Professor. I’d been kicked out of college in 1963. Later Hyun-suk told me about a free offer of the University hospital, for a full physical exam for faculty. It was something I’d never really had, and the last vague one had been done back 15 years ago. Never one to pass up a freebie, I signed up and went.
The place was like a medical assembly line, shunted through like a car body being put together, except here it was more the fashionable matter of deconstruction: take out 8 vials of blood, sent off to labs for analysis; pulse, breath, pulmonary, intestinal exams, flipped this way and that by a machine moving tracing fluids in your gut; an ecographic tool probing your innards. It was fast and efficient, and a few days later went back for the analysis. Cholesterol a touch high, blood pressure too. I knew about both those. A slip of the pen or something had me down for “extremely obese” in the gut. I’m 5’10 and weigh 150, and there’s no there there when it comes to my belly. What we get from an exam where no one actually touches you, you’re just one body on the line, zipping by.
One thing though did pop up to mess the clean bill of health, something I had anticipated. The ecography exam had seemed to hone in on my pancreas as the lady did the exam, marking it, and seeming to mark something else. My mother had died of cancer of the pancreas 30 years ago. Genetics. So towards the end of the consultation the doctor said there was a “nodule” in my pancreas, and this could or could not be a sign of the unsaid word, cancer. Funny how the doctors seem to assume you can’t deal with simple things, like cancer, life and death. It’s their business, but I guess they see too many cases of adults who never grew up. So I had to bring it up, as he referred me to the next specialist on the assembly line, and we booked for a CRT exam a few days later. The doctor said none of the cancer markers had shown, and all my other readings were normal, so maybe nothing bad, at least not yet. So it was back to the technicians who inserted a needle, injected a dose of iodine to help the machine read the innards, and then slipped me into a metal circle that shunted across my torso, spinning, zapping X-rays, taking a more precise reading of the pancreas and its errant guest.
More to come. Tomorrow we go hear about what the CRT says. I think I know.
Here’s letter sent to friends, after my visit for information on the CRT:
Today went to Severance Hospital to find out the analysis of the CRT or whatever it was done the other day. Marcella came along, visibly nervous though I tried to cajole her with humor out of it, but to little avail. We arrived a touch late for our appointment at 9:30 am, and so had to wait a bit amongst the others who went into the office and emerged a few minutes later, conveyor belt swift. Our turn came, went in, sat down. The young doctor pulled up the electronic files, showing us as the scan dropped down through my body, “here’s the heart, the liver, and then honing in on the pancreas, this angle and that. He said the seeming nodule in the tail wasn’t there, the other machine had mistakenly read a something. Marcella audibly was relieved. Then he flicked on and pointed out some gray mass on the edge or side of the head of the pancreas, and said “there’s this” which made Marcella slump a touch. The other day he’d commented how much easier something in the tail rather than the head was to operate on. He then went on that the indications are that this was a “lesion” on the side of the pancreas, or was a “nodule,” but in either case there wasn’t any indication it was (silent word) cancerous, and that statistically there wasn’t any reason to think it was, others had this and it was no problem. However, he suggested we do an MRI in 2 or 3 months, up to us. Pressed a bit more on what was meant, he seemed to indicate (his English is OK but not great) that at this time it didn’t appear to be in any way bad, and we should just keep track of it. I tried to get more out, like the odds of it becoming cancerous and he seemed to waffle a touch, unwilling to give anything more specific. He didn’t say it could become cancerous, no more than keep a watch and come back in 2-3 months for an MRI. I then told him we were attempting to have a child, which begot a quick, “Well, in that case come in promptly for the MRI.” Marcella and I didn’t quite see the logic of this jump, though I doubt it was indicative that there was more of a problem than he was letting on. I think he was just erring on the side of caution, thinking in such a case better to know a bit more, which apparently the MRI does. So we’re now scheduled for an MRI this coming week, and the Monday after they’ll give us the analysis of it.
For the moment my reading is that it is probably not now cancerous or a problem, but that it could be in the future, and we’re lined up for an MRI every 3 months. In case it does turn into a problem we should be on top of it, and catch it early, upping the survival rate/length of time. Being though on the pancreas’ head, it’d be apparently a messier more complicated operation, but doable.
So for me a relief, though for Marcella it has underlined that I am not a spring chicken and my being around is not assured, hence a bit of anxiety for her. Understandable. And a little wake-up call for me to get my chaotic papers (bank stuff mostly, along with originals of work) all organized and legally assigned, so in case I do drop dead or get run over by the proverbial bus, or this takes an unhappy turn, its all done.
So, not really a false alarm or a clean bill of health, but a little red flag to pay attention to. Not much “to do” about it – dietary things don’t matter much apparently, and there’s no preventive medicine, and having long passed the stage of being nervous or stressed out, little to do there. So we’ll do as we did last night, and go swim 30-40 minutes, do our other exercises, mind our food, drink very sparingly, and be happy campers. And go have the MRI next week and find out the data the one after this, and if this happy-toes stuff gets flipped then, well who woulda thunk it?
News for now. I’ll keep you posted. Now back to work, and boy is there a lot of that (self-chosen, of course).
Have had time to let all this sink in, a kind of tentative and temporary reprieve from possible worse news. Perhaps only for a week, once we get the MRI and word on its indications. Meantime friends in New York, one of whom is a doctor specializing in such things, offer a bit of expert “second opinion” once we send the data (all nicely available to us on CD for the asking, wonderful scans slicing through my body, of which I’ll post some here once I have them and figure out the mechanics of pasting them in.) For the moment, whatever comes next, it is a good workout for the philosophy muscles – the kind of workout that confronts everyone, everyday, but which we tend to avoid until pressed by circumstances.
So Tuesday came, and I went for MRI, and here’s letter to family with report:
This morning up very early for a 7 am appointment for MRI scan. Outside the window snow obscured the towers down Jongno, and went out, caught the bus and we got there fast thanks to the empty streets. Needlessly fast as no one was there until a bit past 7, and they’d asked me to show up at 6:30, which I did. Time to read some of the NYReview of Books. Finally someone arrived, took my card, had me sign an OK for iodine injection, gave me hospital robe, and I changed, went in to lie down on the MRI machine, a big circular funnel. He wrapped me up, set my body as required, and slid me into the hoop. Uncomfortable position of the shoulders, a bit painful. Technician advised not to be afraid of noise, and began the process, little whirrings and discreet mechanical clanks, then bursts of differing loud frequencies. One could feel a bit of warmth, like being in a radar wave oven. Courtesy of the pain in my shoulders I had a little wave of claustrophobic anxiety, nervousness at the constricted space. In the less than good English voice on headphones instructed to breath in, out, hold. Then a long sequences of breaths at the exhale of each came a burst of frequencies, I counted 80 of these. Then withdrawn, injected with iodine for contrast, and back in for the y same routine, plus some more. I mentioned the discomfort of my shoulder and suggested letting me have arms to side, which he initially nixed, but then let me have the right arm body, but left up with IV line. Did it again, with some added bursts of sound. Slid back out, sit up, IV tube removed, hold gauze swath, slippers on and pad away to dress, and return to the snowy streets. We go in next week for the analysis of the MRI.
Meantime Marcella is off at her job teaching kids a bit of Italian and about Italy. She had to go nearly 2 hours on subway to do 2 and a half hours teaching. She thinks she’ll quit after 6 weeks – as I had more or less forewarned her, the job wasn’t really half a day, but most the day for half-day low pay. She likes being with the kids, but not dealing with the organizers, or the commuting. I think she’s better off editing – my stuff, or as she did with Cheol Mean’s short, other’s films. I am pretty sure Cheol Mean will ask her to edit his next feature. So she’s on her way with what she really wants to do, which is to edit.
Then a few days ago, I got the letter below, from Laurel Kiefer, who plays the art patron in All the Vermeers in New York, and whose husband is a well-known specialist in pancreatic cancer and related things, and apparently knows all about such things. Last time we saw Laurel they took us out to a spectacular dinner in NYC, one of those fancy places where service hovers over you, and the food is like little plates of art, one thing following another. I shudder to imagine the cost, but I’m sure for the party of the five of us (Laurel and Harry, Marcella and I and our friend Jane, through whom I met Laurel for the film) it was well over $1000.
Here’s what Laurel wrote, consulting with husband Harry.
Good grief, what a scare that was. Per Harry, “MRI – what a waste. So there’s something in his pancreas [on an MRI – so what] ! It’s probably not a cancer.” Well, it’s free, so why not have it? Harry does say that if the first tests were CTs, the MRI can better tell if the thing may be a cyst or not. But in general these two tests are of little use for the pancreas. Re. “They said wait off 3 months for MRI, but when we said we’re trying have a baby he quickly suggested go get the MRI now. Not sure how to read that.” Harry believes you have the right instincts; he is almost positive that you have nothing and they just said that because they had scared you. Now that they said to get an MRI in 3 months to see if the “thing” grew, they can’t very well say, “Oh, you’re having a baby? Don’t worry, you don’t have anything.” And they don’t want you holding off your plans for 3 months for no reason, so they want to give you a clean bill of health right away and they need an excuse (the next definitive test!) to do so. That’s our best guess. (I don’t know if this is the case in this situation, but here there is a lot of controversy about scanning tests, esp full-body scans and the like, for the healthy, because they so often result in false negatives – negative meaning finding something, vs positive, meaning finding nothing. False negatives lead to lots of money being spent on nothing, huge anxiety, and sometimes even unnecessary medical procedures that harm people.) And Harry was right – I had started sending you all his standard advice relating to the possible diagnosis of pancreatic cancer (like, Don’t get any operation without first getting chemotherapy – and radiotherapy too if possible, etcetera) and he was very aggravated, accusing me of going overboard when you probably didn’t have cancer, and I’d be scaring you – even though I had said cancer was very unlikely.
So maybe not even a cyst! Great!
Note that it is very easy for surgeons to capitalize on people’s reflex to “Cut it out, doc, I just want to get rid of it!” Whatever “it” may be. Often nothing – or a something which is nothing.
A doctor friend had just that sort of nothing resected. The “mass” was scar tissue, i.e., nothing. But the surgeon removed it, looking for the cancer, and the guy spent 3 months in the ICU. On the other hand, we have had patients with proven initially unresectable cancer improve to the point where they were operated on delicately, and then went home in as little as a week or so, and were cured.
EUS (endoscopic ultrasound) is much more specific than MRI. That is the test you really need. Maybe if there is no great EUS practitioner in Korea, or at least not in the hospital your university is using, you could get one in Japan, where EUS was invented in the 80’s. But watch out suggesting this as you know there is some negative feeling between Koreans and Japanese. (You could go to Dr. Kenjiro Yasuda; I think he’s from Second Red Cross Hospital, Kyoto, Japan – he’s a well known endosonographer.)Then hopefully you’d get a definitive answer. Did you get a procedure where they put you gently to sleep and put a fiberoptic camera tube down your throat? You get a video like women get when they’re pregnant except more microscopic because it’s right up next to the spot being imaged and uses a higher frequency soundwave. That would be an endoscopic ultrasound. Harry’s specialty is EUS of the pancreas which is hardest to see and interpret. Few doctors do it, or do it well, but this is what you need, what is now accepted as the best diagnostic test for pancreatic questions. You should just get that without all this other stuff – CT, MRI. The patients we see normally come in because an MRI and/or CT “is not definitive” so they need an answer. You just want to get the answer. An MRI or CT is usually not diagnostic of cancer until it’s late in the game. In your email, you’d mentioned an endoscopic biopsy, but I guess they wanted to run the gamut of everything else first. Once they have an answer, there’s not much reason to order the other tests.
Why were they looking at your pancreas? Just a general check-up? You weren’t and aren’t having some sort of symptoms of anything? I didn’t get the impression you had from your letter.
The white spot which is presumably what they see could be fat (nothing), scar tissue (nothing), a cyst (almost nothing), or least likely, could be cancer (obviously something). Scar tissue is common if you had been a moderate drinker for a long time. Fat can just settle there with years of living – no big deal. No one knows why people might get a cyst, but again, more common the older you get.
On the other hand, if originally they actually had seen something in the tail (vs a language issue and it had always been visualized in the head?) but in the next test it wasn’t there and now they just happen to find something in the head, doesn’t it sound a little like they are fishing? A real something wouldn’t migrate from tail to head.
Dr. Harry dictated to me the following:
“As Harry suspected, it probably is a cyst and there are plenty of opinions as to what to do about this. Of course, the most aggressive strategy, to operate, comes from surgeons. But Harry has yet to see one of these turn into cancer. His advice is, “Have the baby!” And, ‘Of course you need an endoscopic ultrasound!’ “
In regard to 20% more likely to get pancreatic cancer because your mother had it – well, if they are correct about the percentages, which I really am not up-to-date on… Let’s figure that out.
About 30,000 people get pancreatic cancer in the US every year. Almost all die if you eliminate the patients with cysts that surgeons like to call cancer cures, but the 30K should represent real cancer.
We had a 10% cure rate in Harry’s study, the first ever to compare pre-surgical chemo-radiotherapy to surgery as initial treatment for pancreatic cancer. Published in 2000 in Cancer, the Journal of the American Cancer Society – the foremost cancer journal, so a ground-breaking big deal. The patients who were initially unresectable (inoperable), and who therefore agreed to the “preoperative” treatment, had the only ten-year survivors. The survivors came from a subgroup who were downstaged (cancer reduced) to the point where they became operable. The group who had been truly operable initially (and only about 10% of pancreatic Ca is traditionally found while still truly “operable” though many surgeons operate regardless) all died sooner or later. Average time was something like 14 months for them. For the initially inoperable group, average was more than 24 months at the time the study was written, but 10% are living for at least 10 years, i.e., really, really cured.
But back to the chances of getting this cancer. In the US about 30K get it in a year. Also about 30K die in a year (not the same 30K but some do die the year of diagnosis) out of how many – 300 million? Let’s say half the 300 million are young enough to so rarely get it that they don’t count. So 30k out of 150 million. One in 5000 chance a person gets it this year. If your doc was right about the 20%, your chance is 1 in 4000 with the higher risk, right? It should be even higher, because your risk goes up with age. Obviously, if something really shows up in a CT or MRI, your risk probably skyrockets, but still – if your risk were 95% higher, it would be 1 in 250, correct? I don’t know if my calculations are accurate, but you get the picture.
However, it surely sounds like your test results are strongly suspect, and may be the same as nothing showing up. No Ca markers, no symptoms, if I understand correctly, and what seems to be a shadow or something on a test that is commonly unreliable for pancreatic diagnoses short of advanced Ca; a shadow or radiological artifact that disappears on a second test but shows up in a spot where it wasn’t the first time. Hmmm. So probably back to the 1 in 4000 scenario. Let’s be real conservative and take a guess that you’re 10 times more likely than other adults with the family history because you also have regularly consumed a few beers a day and are in a slightly older subset. Still 1 in 400.
Good odds. Aren’t traffic accidents more common? Marcella could even go first! On the other hand, we’ll all die one of these days. Good to exercise the philosophical muscles and be prepared. My painting workshop leader, who is more like a Buddhist monk using painting, about which she thankfully has no technical tips, as a platform to Buddhist philosophy, says, in her charming French accent, that we are all headed for a train wreck (death), but that everyone refuses to keep this in mind.
On this cheery note, I’ll sign off, wishing you the best for the forthcoming baby, and awaiting any and all medical info that you care to send.
Love Laurel and Harry
So let’s hope this sanguine view is right and this has all been a lesson in philosophy, as well as many other things. We’ll know more come next week, when the Severance folks have their say, and we either get further tests – the endoscopic sonography and maybe if seems needed, biopsy. Or maybe they say, ha ha, fooled you, and just what you needed was a few more gray hairs ! Actually I could use a few more, gray or any color…. Which ever way it gives me lots of food for thought, and once I get the CD with all the scan imagery on it, lots of visual stuff to play with too.Tune in next week for the next exciting installment of As the World Turns….