TUMOR INTEREST GROUP
Email 16
1/5/2015 Subject: the universe and other miscellany To TIG Episode 16 Day 113 12/22/14 Joe Cocker dies of lung cancer at 70. 12/23/2014 Last episode I mentioned the change in purpose and therefore methodology behind the annual physical as I have always known it. Things missing, things added, a change in emphasis. Don't know how, but I missed minor but important changes, didn't even think about them until last night. Purely Freudian, I assure you. For the men in the readership: (1) an end to the words "Bend over and cough" with or without "Turn your head" and (2) an end to the amazingly primitive, always awkward for everyone, "digital" exam of one's prostate. Tuesday, 12/30/2014. Appointment with Benton & new chemo regimen. A look at the latest CT, done 12/26/2014. Comparingthis CT with the previous one shows almost no difference in tumor size. This could mean more than one thing. It could mean that we are at a balance point, keeping the tumor from growing, but no longer killing cells. Or it could be that more cells are being killed, but that the volume of dead/dying cells plus the volume of living cells remains constant, so that how it looks the same to a CT scanner. A PET scan would indicate which of these is true, but no word from Benton yet about doing that. One way or another, this tumor will figure out how to outwit the drugs. It’s the Darwin thing - natural selection. Cancer cells reproduce wildly and therefore mutate often. In the mix of mutations, invariably there are some cancer cells that are immune or partially immune to the drug(s). They survive longer and reproduce better, so eventually the drug(s) can’t keep the tumor from growing. How fast do they divide? How immune are they? Can’t find that on the web, so I may be lying to you. Anyone knows, write me, please. But no 'Reply All', thanks. I'll get the info out. But it also could be Benton being nice. Perhaps the stasis is ominous. If the two drugs stopped having as much effect, do I enter the end game sooner than expected? Need to ask. So this was my first time with my new Smart Port, first time with only the pemetrexed. Quite a difference - took about 40 minutes instead on 4 hours because it was the cisplatin that wanted all the saline, extra anti-nausea meds, and lasix, the drug that makes one pee every 5 minutes, give or take 2 minutes. And no bruises, no hunting for tiny veins, no needles popping out and dumping poison in my arm - BTW, that area of my right arm is very tender, painful, swollen, and will take a couple of months to subside. Everyone likes a God with a sense of humor. We went to lunch afterward and the thought came to me that if I no longer had to take the lasix (which, as a side note, is controversially used in America on race horses to control bleeding, but also make them urinate about 10 - 15 liters in the first hour after taking.) then perhaps the cisplatin but not the pemetrexed attacks the kidneys. If true, then would the day before - day of - day after onto alcohol ban still hold? I made a quick call to Anna, Benton’s main nurse and gatekeeper, but had to leave a message. Had sparkling water with lunch, but she called me back in a couple of hours to tell me I could drink alcohol, but not to excess. Well, that returns a bit of fun to life. Also, my hair, which didn’t fall out in clumps, but has stopped growing and thinned out noticeably, should start regrowing in a couple of months, and my level of side effects, including fatigue, should lessen. One other change - I’ve stopped the three-days-after steroid because it’s the likely cause of my general pissy mood and anger at whoever is within striking distance - normally Dora. It appears to be a trade off - take it and become psychotic, don’t take it and get nauseous. I have two other anti-nausea drugs and any number of anti-psychotics, but no spare Dora, so the choice is simple. 1/4/2015. Sunday. Yesterday I went out to photograph for about four hours, in and out of the car, up and down two peninsulas. And came home not exhausted. But then it hit around four, and a 1.5 hour nap didn't keep me awake past 9:00. Today better, but I'm not pushing it much. The most noticeable thing is an improved mood and less feistiness. In the department of "It could be worse", this article from the Times: http://www.nytimes.com/2014/11/07/world/asia/the-dead-of-delhi-unknown-and-unclaimed.html?nlid=338999&_r=1 jan
Email 17
1/13/2015 Subject: At skin level, you look great To Tumor Interest Group Episode 17 Day 121 I can't put a number on how many students over the years have told me, portraits up on the board for critique, that their goal (and accomplishment) was to capture the inner person, their soul, the real person, or some such variation. My response is always the same - they must have a better camera than I have:mine only gets the light reflected off the outside. I hardly appear to have cancer at all. When I run into someone who knows but hasn't yet seen me, a momentary look of confusion passes over their face - I should look sicker, or at least balder. Swaying with weakness; either terrified of dying momentarily or beatific with that aura of certainty on my way to Glory and Eternal Reward. (A whole new topic for another time.) Once a different, faster, confused & suspicious look convinced me that I shouldn't ever again tell a friend that it was all a gag, just a play for sympathy. I felt a bit like David Mamet and he was probably checking for his wallet. It confuses me as well.A couple of days after the first four chemo treatments, and going on for about a week or ten days, I certainly felt exhausted, unhappy, with mouth sores and stomach rumbles, sleeplessness, and in enough odd pains to actually deserve some degree of sympathy. Nothing really visual, but something concrete. Dropping Cisplatin, the heavy metal bad boy of chemo, seems to have alleviated even those few problems. This time I was pretty much ok after treatment. No poster child for cancer research, that's for sure. I can't walk very far, maybe a block, before getting winded, and am still using both handrails to climb stairs. And my right arm, elbow to wrist, is a red, swollen, hard, mostly numb, painful mess from the chemical burns when the needle came loose and dumped Cisplatin into my forearm instead of the vein, but really - what is the complaint when compared to what other people go through? Especially people in movies. Don't laugh - movies and still photographs form many of my/our mental pictures of people in trouble, any kind of trouble. I've lead a life that didn't introduce me to too many such people. So TB is still a quiet cough before a silent death on the chaise by the window with the doctor looking sadly out into the distance; and cancer is an amazingly cute, brave, bald, smiling tot with a giant stuffed panda and a winning attitude. And Also Mayoclinic.org: Peripheral neuropathy: a result of damage to your peripheral nerves, often causes weakness, numbness and pain, usually in your hands and feet. It can also affect other areas of your body. Many causes, including exposure to toxins, especially metals. Platinum, anyone? But again, I don't have enough of a problem - the pain is lessening, not as much loss of feeling as a week ago, no real danger of putting my hand on the wood stove without realizing it. Yesterday, for a few minutes, two fingers on my right hand, the arm with the chemical burn, were numb, but then they weren't. But I had just come inside and my hands were cold. Is this something or nothing? Even if it's something, is it enough to get a charity started? To set people weeping? To call a doctor? No. I'm still dying, but I'm sure not being obvious about it. More whining, less suffering.Just shy of four months after diagnosis, and my immediate worries are a root canal and a crumpled disk shooting pains into my legs. I could be anybody.
Email 18
2/9/2015 Subject: 5 bagels Tumor Interest Group Episode 18 Day 148 Ponderable: • Under these circumstances, how can there be nothing to write about? • And is that a good thing? • Can time be wasted? Sundays Musing: Dora is outside cleaning the VW and shoveling snow. I try, but in three minutes I have no wind, no energy, no strength. And there is more than three minutes worth of snow. Last Sunday I did one of those flailing-arm, not-quite-falling in thigh-deep snow while attempting to get to the bird feeder hanging outside my "studio" window. The feeder was, for a change, at face level, not a foot above, even though I was standing in knee-deep holes. Part of the problem might be that over the last few years I have lost enough height to make deep snow less uncommon. Monday measurably more expected. I will probably be reduced to tossing seed on the ground through the porch window, which will please both the pair of ground-feeding cardinals and the squirrel who plows his way through the snow from the evergreen at the corner of the house, fifteen feet from the squirrel-proof feeder. The chickadees may have a different opinion. I have been printing pictures for a photographer whose work is completely different from my own in subject matter, visual approach, intent, tonal range, you name it. Something I've rarely done, and never at this level of concentration and thought. I'm trying to render these photographs from my knowledge of their predecessors, conversations about their emotional loading, and seeing the journey the photographer took the digital files on before bringing them to me. It is an extraordinary experience, a great adventure in mind reading. So my breakfast rituals, which is exactly what they are, are probably of minor interest to others. Indeed, other than ending in enjoying breakfast, they are hardly of interest to me. But Sunday brought a change, not in ritual, but in attitude, that I found worth thinking about right through breakfast. And less so afterwards. For years, many, many years, breakfast, which I typically eat alone about an hour after coffee, (I love not having to be anywhere. If I have to be somewhere I need to wake at least two hours ahead of the time I have to leave the house.) has been a buttered poppy seed bagel, two or three kinds of cheese, and orange juice. Delicious, but not on anyone's recommended diet. Three or four years ago, the combination of Dora's repeated suggestions and the discovery that Key West does not have an edible bagel, moved me to multigrain Wasa bread, a Scandinavian hard cracker with crunch, 60 calories, and an inoffensive taste. Cheese and orange juice remained. I got to like it and didn't waver for several years. One of the very few taste changes chemo brought was detesting the Wasa bread. Or maybe my taste buds sharpened and I understood that they are simply a form of recycled cardboard. I returned to acombination from much earlier in life, Shredded Wheat plus Grape Nuts and milk (now lactose free). But I soon tired of having that every day and began alternating with an English muffin, 2-3 cheeses, and OJ , thus bringing back my much-missed cheeses. Fewer calories and bulk in the English muffin than in a bagel, and eventually, under protest, I exchanged tomato juice for orange. Fewer calories and much less sugar. One of you out there gets the blame for the tomato juice - you know who you are. You can see this coming, I'm sure, but you need to see the guilt as well. A month ago, on a Sunday, I went and bought a fresh poppy seed bagel, substituting it for the English muffin. I thought I could handle it - buy just one, only on Sunday, and not even every week. Then one Sunday I bought a small OJ, too. Tomato juice wasn't working. It was noticed, of course, and commented on. Now, I haven't lost as much weight on chemo as I expected (and wanted). Some, but not that much. So the guilt was reinforced. Kept my hair, but also kept my belly. Last Sunday I went to get a bagel for myself and one for Dora (sesame seed). Instead I bought six. Dora's sesame and five poppy. I had had a realization. I could alternate between cereal and English muffin, but toss in a bagel as a pleasant surprise for myself‘once in a while'. And then I bought a half gallon of OJ, with pulp. But the realization wasn't the alternating, it was that a terminal disease not only makes you change your rut, it also allows you to do so. Side bar: I was having a root canal Friday afternoon, which saved me from seeing The Russian Arc.While the anesthetic was taking hold I was explaining my situation to the endodontist and his assistant, neither of whom had I met before. He asked me, out of curiosity, not as a suggestion, if I was taking special care not to waste time now that time was limited. Hadn’t really thought about it in those terms, and yes, I have always thought I wasted too much time. I do crosswords - easy to medium, none where I ‘learn’ anything; I never go back and look up answers, so I rarely progress. I do Sudoku, but there’s nothing to ‘learn’ except how to do Sudoku. I stare. I nap occasionally. I procrastinate and then worry about it. But as I thought, I decided that I’m not ‘wasting time’. It’s all good, it’s all who I am.
Email 19
2/9/15 Subject: how I make your coffee Tumor Interest Group Episode 19 Day 148 For so many years you have been waking up to find a thermos of coffee next to you that you may have forgotten how I make your coffee. For the last ten years or so the coffee comes from Cafe Mam (pronounced "mom") in Eugene, OR, which, along with Ann Arbor and Berkeley, is one of the country's great left-wing college towns. Cafe Mam presses all the right buttons - the coffee is 100% organic, fair trade, shade grown, small Mexican farm grown, the company is family owned and operated, and is working hard for pesticide reform. They only sell the one kind of bean - I forgot to say that they are all European Grade - but with many degrees of roasting. We like the Italian roast, whole bean. I've been buying half regular, half Swiss water process decaf, in 5 pound bags, but you could switch to all regular or even to 1.5 pound bags if you find yourself using less. Order at 1-888-CAFEMAM. I store some of the beans in that glass jar with the rubber seal, and the rest in their own bag, which is lined with something like glassine paper, inside a large plastic bag. It takes about 10 days to get them so you need to order just before you are down to the last glass jar-full. The grinder's upper grind stone accumulates the bean grindings because they are oily. When you see much less than you expect in the clear plastic container, twist the stone's handle clockwise (it's marked), pull it out and use a paring knife to clean it out. Best not to wash it. Oh, the clear container for the ground coffee has a small hole upper rear left. If you don't hold your finger over it, ground coffee will be sprayed all over the place. The filters come from Chemex, 1-800-243-6399. The unfolded half-moon for the small pot. A quarter inch below the nipple for one cup, almost to the bottom of the wooden handle for two. jan
Email 20
Subject: How I might live Episode 20 Day: 160 2/16/15: Leslie Gore ( “It's My Party”, ”You Don’t Own Me”, and "Judy's Turn to Cry”) dead of lung cancer at 68. One of the great bouffants of the 60s. Day before yesterday a friend, a fellow traveler in light, sent me a link to a piece by Oliver Sachs in the New York Times. I have always found Oliver Sacks to be incredibly annoying. Gifted, intelligent, accomplished, author of 15 books, amateur chemist, professor of neurology and psychiatry at Columbia University and Columbia's first University Artist (what he fuck is that? Does he paintmurals in the hallways?). Undoubtedly charismatic,a great joke teller and a wonderful ballroom dancer, I instinctively want to punch him in the mouth. Now, it seems, he is not only going to prove by his life that that he is better than me (better than I? He would know the correct wording.) but he is going to die better than I/me. At 81 some obscure cancer he was cured of years ago has returned, as it does in only 2% of patients - see how special he is? - and is going to kill him. But rather than going 'gentle into that good night', or even aimlessly 'raging against the dying of the light', Oliver (may I call you Oliver?) is going to double down on living it up. He’s giving up the wording about the world having met a few young people that he trusts, and will concentrate more than ever before on saying goodbye to friends, traveling, writing a few more books — living "… in the richest, deepest, most productive way I can. and … achieve new levels of understanding and insight” Makes me tired just typing it. Well, Oliver, I never could live up to you and I see that I can’t die up to your standards either. Having come to that conclusion I am now free to decide, with or without justification, how I will go into that good night and what I will do in the meantime. I hope, frankly, to just slide comfortably into it, not angry, not disappointed, and not frightened. But that only covers a moment. For the time up ’til then, I feel comfortable saying I will read more books than either I (or He) will write. A number of people, friends and physicians and physician friends, have advised me to allow ourselves to do favorite things - especially travel where ever we’ve always wanted to go, spend time doing the things we’ve never had time for, and like that. Nebulous, but well meant. The problem is that, other than being tall, for which it is too late, there isn’t anything I can think of that I really, really wanted to do that I/we haven’t done.Not an issue of previous accomplishment, I assure you. Rather, it could be insufficient imagination, low tolerance for discomfort, inability to see the point, or just hat we’ve spent our lives aligning our needs and wants and pursuing lives that let us live our own way. So what have we figured out that we might splurge on? The same old things, I’m afraid - ending winter in Key West; seeing the Tour deFrance with the friends we have watched with for years (it’s just that they now live in Napa Valley with a pool and outdoor kitchen); maybe a third trip to Berlin, maybe not; buying a few books here and there; eating at home more often than not. They’ve been good all these years. There are changes,of course: like not thinking about needing new clothes, but upping the ante to include a $50 bottle of wine once a month, and possibly buying extra foot room in economy class.
Email 21
2/25/2015 Subject: taxes Episode 21 Day 164 February wine:Vincent Bachelor 2012 Chassagne-Montrachet Les Benoites. A burgundy, which it turns out is just a pinot noir grape born in the right neighborhood. Took being open for a half hour before the flavors really developed. I do not have a proper wine vocabulary, so I didn’t notice grassy highlights or earth-tumbled strawberries, but it did indeed taste like wine. Better with food (angel hair pasta, arugula, fresh tomatoes) than on its own. A bottle goes right on down, hardly any trouble at all. Up at 2 a.m. to pee, of course, and noticed the quiet, nagging start of a headache; took pills. Don’t want to blame the wine, so let’s lay it at the two fingers of Basil Hayden bourbon I started with (spice, tea, hint of peppermint in the aroma). According to legend, only two things in life are guaranteed. And I just finished my taxes. (TurboTax: “Good news: You qualify for a medical deduction of $4,970”). So, strange view of what constitutes good news or not, one down, one to go. Tomorrow is my next (5th) CT scan. These hazy shadows have become modern science’s tea leaves. Tuesday, Benton will read them and, mixed metaphorically, give a thumb up or down, or possibly cross-wise. I’m continually wrapped up in the overlapping paths and ironies of my life. The amount of time and pleasure spent reading negatives and predicting their meaning; the short career spent in the twilight between wet chemistry x-rays and fully digital x-rays, when the input was digital input but the output was still wet chemistry. It only lasted until doctors and insurance companies became comfortable with full-on digital, and safety and cost issues in storage and retrieval were solved — maybe 20 years, but it sure was fun while it lasted. I’ve spent my life bouncing around writing-with-light, and now it’s bouncing me back. I can’t think of another sword I would have preferred to live and die by. I love the smell of D-76 in the morning - no, wait, I wandered into a movie. Following up on my rant on Oliver Sacks, I was sent the essay “The Median Isn’t the Message” by Stephen Jay Gould. A scientist looks at the statistics of his cancer —‘median mortality of 8 months after discovery’ — from the point of view of the statistics, not the fear based in mis-understanding them. Stephen’s approach, which worked for 20+ years, was to understand that median means the point at which half the cases are above and half below that 8 month number. Mentally he put himself in on the long tail running to the right of the 8 month figure, which meant he would live longer that the median, and possibly by a lot. Read the essay to get the details, this is not a stats class, this is all about me, right? Anyway, it worked for him. So you never know. I could live long enough to need new clothes after all.
Email 22
03/03/2015
Subject Quickie
Tumor Interest Group
Episode 22
Day 170
Quick note: CT scan shows further reduction in the tumor, roughly 1 cm smaller in each direction. Please have a round on me.
Email 23
03/19/2015 Subject: breath Tumor Interest Group Episode 23 Day 186 3/14/2015 Jimmy Greenspoon, keyboardist for Three Dog Night dead at 67 of metastatic melanoma discovered October, 2014. 3/15/2015 marked six months since my diagnosis. Time does fly. I was sort of 'given' —no one who deals in cancer wants to prognoses; every tumor dances to its own orchestra — a statistical range that centers around 1.5 to 2 years, but with an unevenbell curve distribution that runs from 0 (i.e., you are diagnosed the day you die) to longer-but-unspecifiable-except-that-it-will-certainly-kill-you-before-you-are-ready, what can you say about those six months?Am I now now ⅓ to ¼ of the way to my expiry date? Should I now say I have, statistically (probabilistically, problematically?), 1 to 1.5 years to go? Since the chemo has been working, does the dateline slip further out than it was, or is that built into the calculation? Is it actually a calculation or just a place-filling placebo for the terrified? Since the treatment world changes and the variables are practically infinite, who is it that tries to keep the equations up to date? Is it an intern's job or a resident's? But actually this rather disjunctive episode is about a breath I took the other night, just before falling asleep. Take a breath now, please, and pay attention to it. Probably you didn't bother to take a really deep breath. Do it now — one that lets you feel the diaphragm drop, the lungs expand like a startled blowfish, and the exhalation just goes on and on. It's like pretending to be a pearl diver, or the winner of the contest, or the birthday boy. (Do physicians eat those dampened, blown-upon cakes just like the rest of us? I bet that goes back to before germ theory.) I got to take that breath the other night for the first time in a long time without being constricted or in pain just before the end of the inhale. And I could do it a bunch of times. Felt like breathing. I've wondered just how this cancer will kill me. Some day it will figure out how to overcome the effects of the drugs. Tumors already know how to be invisible to the immune system, and they constantly evolve - the cells that the chemo drugs aren't effective on get to divide while the affected ones don't. So far, at some point the tumor just out-evolves the research. The back-pocket drug just coming out of trials and available in the next few months works, when it works, by de-mesmerizing the immune system and getting it back into the fight. We'll see. Among the possibilities of organ failure if the metastasized tumor invades other organs through the blood or lymph systems (lung cancer seems to like the adrenal glands, bones, and the brain). If not, the main tumor might get large enough to inhibit my breathing, or it might put out fluids that result in pneumonia. I could be wrong in the details, but I think the big picture is pretty close. That’s not what I want. Not at all what I want. It's what I fear most, that not being able to catch my breath part. Does morphine expand the bronchial passages? Does oxycodone make the tumor give me back the space it takes? Not as far as I can tell.
Email 24
Email of 2015/04/07 Tumor Interest Group Subject: Another Side Episode 24 Day 205 March wine: Chateau Laffitte Carcasset, Saint-Estephe, Cru Bourgeois, 2010. 68% Cabernet Savignone, 27% Merlot, 5% Cabernet Franc. At this point all I remember is that it was memorable. Honesty demands that I tell you, no matter where the chips fall, that it is 6:30 a.m., still dark, 77 degrees with a light breeze, and I am typing by the side of the pool. Actually, I typed that sentence out by the pool, then moved back inside, next to the French doors, looking at the pool because that table is uncomfortable to type at. We arrived mid-evening of Wednesday, April Fool's Day, to great weather and a mediocre dinner Thursday. Have decided to go out to lunch and make a small-ish dinner at the house. Side News CIPN stands for Chemotherapy Induced Peripheral Neuropathy. There are other reasons to have peripheral neuropathy, but if you get it from chemo, not uncommon, you get the acronym to make you feel better. I'm looking northeast and the sky just became blue, separating it from the palm fronds I'm looking through. Among other things, peripheral means not relating to the main part, being at the far edges. Neuropathy: "an abnormal and usually degenerative state of the nervous system or nerves." Mayo Clinic has this to say: Signs and symptoms of peripheral neuropathy may include: • Gradual onset of numbness and tingling in your feet or hands, which may spread upward into your legs and arms • Sharp, jabbing or burning pain • Extreme sensitivity to touch • Lack of coordination and falling • Muscle weakness or paralysis if motor nerves are affected If autonomic nerves are affected, signs and symptoms may include: • Heat intolerance and altered sweating • Bowel, bladder or digestive problems • Changes in blood pressure, causing dizziness or lightheadedness So far all I have is the first symptom and some reasons to watch for the last (see below), and I am acting on the premise everything will remain the same. May or may not be reversible; nerve tissue is funny that way. For me, it's like having latex gloves on my fingers and extra insoles - I feel things, but as if veiled or apart. I'm to take B-6 and have a good look for blood or damage on the soles of my feet every day. As with the other side effects I've had, it's on the mild side and easily tolerable. Also easily masked if it starts being painful. Absurdly taken with symptoms: I suppose, like medical students on rotations, people with diseases do too much looking around the internet and are easily convinced that something is going wrong. Story: High Blood Pressure Tuesday before chemo (and before leaving for KW), my blood pressure was taken and was high - above 150. But the intake person, said I'd been worse before - as much as 175 a couple of chemos ago. Boing, I'll bet you could see the springs snapping in my head. Back story: For years I had been taking three pills for blood pressure daily - Norvask, Triamterene (diuretic) and a potassium supplement because the triamterrene pulled potassium out and into the "waste stream". When I began chemo, my BP dropped so much that Mark, my internist, took me off all three and told me to measure and let him know if it started going towards 150. When it did, I restarted theNorvask but nothing else, and sort of continued watching my 120/80 BP; "sort of" being the operative words. So I panicked and asked at chemo for a prescription for the Triamterene, which, because it falls in Mark's area, the cancer people didn't want to get involved. I quickly figured that I could call Christina, who was coming by daily to feed and play with Josie, and she could mail them. Which I did the first day we were here. Talked to her on the phone, told her where they were, and she found them. All good. While waiting the 2 days, I went to the Dixie supermarkets and used their BP machine - perfect, no BP problems. And when the pills showed up, that was a good thing, because there were only 4 left in the bottle and no way to renew it down here. in the land of Extreme Medicare Rip-Offs. Stop me if I've told you this before, but last year when Dora slid off her bike and needed an ER to clean it up, disinfect, and bandage, it was $900. So I haven't taken but a few car pictures for an hour the other day, winded with the 6 block walk, but am adapting to the temp/humidity more and more. To be walking more regularly. To be carrying the camera more regularly. jan
Email 25
April 11 - 15 Subject: Standing on a ball Tumor Interest Group Episode 25 Day 209 So, CIPN, just plain PN to its friends. I'm not enjoying it as much as you might think. The tingly soles and numbing heels get old, and what remains of the curiosity about whether my legs are going numb or still just the fingers I touch them with no longer amuses. I wrote some months ago that, pre-port, I had an IV slip out of the vein and deliver quite a bit of cisplatin into my right forearm before I realized I was in pain. Stoicism bad. That whole forearm area is still pretty strange - a bit hard and swollen, mostly with muted sensations, and loves being scratched as much as a black lab's belly. So direct exposure certainly damages nerves, but I don't know the mechanism by which peripheral nerves are insulted. The stuff cruises the blood system and probably the lymph system as well, touching every part of the body that uses oxygen. Does it gather at the distant corners and not know its way back? Is it molecularly bad at sharp turns - too large, like a bus in an alley? Too heavy accumulating like heavy metals, but reduced in potency to poisoning only by contact? Does it have something against nerve cells in particular? Is an oncology residency long enough to get into these weeds? Will it ever go away? There's no fine tuning the prognosis here - as Benton told me, every cancer does its own dance. The big picture remains - as his partner Dr Evans told me the day we met, this is the tumor that will kill me. I have never been a balletic walker; I take corners too tight and often carry small bruises to prove it. I stumble occasionally, always have to look down on woodsy trails to avoid killing myself, can't/won't/shouldn't dance (simple line dances and slow, repetitive box steps excluded). I do not trust people who can use snow and ice to their advantage. But I used to adequately feel when my foot hit the ground, that I was there, and stabile. Now, not so much. The soles of my feet respond like they have become rounded; those claw-and-ball feet first seen on Chinese furniture, then popular in England in the first half of the 18th C. I'm not quite certain when I land. Especially at 3 a.m. when I simply want to go pee with paying attention to the small stuff. And meanwhile my finger tips are touching each other, ascertaining location and double-checking existence, in such casual intimacy, that they should perhaps be confined indoors or hidden from small children. It is hot and humid - mid 80s with Real Feel in the mid 90s. I am not shooting, but have plans to rent a car next week and go up and down the Keys looking. I am reading a lot, more than Dora wants, since I rarely feel I can take a long walk or wait a half hour in the sun for a bus. I am about to finish "H is for Hawks", by Helen Macdonald. She was at Cambridge, with a history of literature and falconry when her father died. In her search for whatever it is we search for, she became almost a recluse and began raising a training a young goshawk and taking it out to kill things. At the same time she writes about T.H. White, who wrote the Sword in the Stone, was a bad falconer, and led a horribly miserable life. You may not describe it as cheerful stuff, but it is a finely written essay on life and death. And falcons, of course.Highly recommended, even if you are basically well adjusted. Tonight we go to a lecture on some 17th C shipwreck by the archeologist at Mel Fisher Marine Museum, then to a fine wine store and bar to look for an April wine. jan
Email 26
Email of 2015/04/15 Subject: Happy as a clam Tumor Interest Group Episode 26 Day 214 And now for something completely different: The New York Times, Tuesday, April 14, 2015, page D4 Headline: Clam Cancer, Spread by One Set of Cells It seems that free floating cancer cells, all with approximately the same DNA, traveling through ocean water, are surviving long enough to infect and kill soft shelled clams (steamers and little necks) with a clam's version of leukemia all along the East Coast, from Maine to the Chesapeake. It apparently started with a single clam's cancer. Transmissible cancers in animals are rare - this is only the third type to be discovered. I have nothing to add.
Email 27
Email of 2015/04/24 Subject: image to image Tumor Interest Group Episode 27 Day 222 In January, in a brief moment of madness, I assumed that I could change a lifetime's laziness and mañana-ness by becoming more fit; fit enough to jump over a Maginot line of limitations combining old non-habits and contemporary, cancer-induced reductions in capability through an emulation of a the better angel of a notorious performance druggy. Translation: I signed up for a free 3 month Y membership in the (Lance Armstrong developed) Livestrong program for sedentary cancerous folks. i. e., I was going to exercise my way to strength and "health" against all odds. Turns out that the laws of nature are not repealed so simply, and that a body at rest tends to stay at rest, inertia being what it is, Newton's very first law. Right at the initial meeting, about 12 of us introduced ourselves and gave our stories, of both victorious survival and frightened uncertainty. My voice broke, as did a couple of others, while some survivors with sufficient time behind them had a certain gentle smugness that cried out for a punch in the face. Be that as it may, one woman said one thing that made all this typing worthwhile. She said she felt she was "living from CT scan to CT scan." It was early January, 4 months since my diagnosis; just after my 5th chemo and 4th CT scan. The scan results had been: 1st, showing the tumor (surprise!); 2nd, on ER day just a week later, showing it significantly larger; 3rd, after radiation and some chemo, showing shrinkage; and 4th, showing no change. Of course the scans provide crucial information points, nodes on the graph, but I hadn't thought about them as quite as basic as she had put it. But ever since, that's been in the back of my mind. Back of my mind? How ridiculous. Right there, all the time: brush away the quotidian thought-dust and there it is. In conjunction with a Maine Humanities meeting on Darwin last November, I read a thick biography, Volume 1 anyway, and reread after a number of years "On the Origin of Species". His ability to codify, simplify, and demonstrate the idea of natural selection as the means of evolution, even without knowing about genes, mutations, or how DNA replicates, was the defining scientific idea of Modernity. Gives me goose bumps every time I read it. So clean and simple, such a fine demonstration of the elegance of the idea of Occam's Razor. Unfortunately, the implications of evolution are inevitable: If you can't develop a 100% effective method of killing something before it's rate of reproduction and the statistics of mutation carve a way around the method, that something wins the evolutionary gold medal. And the oncologist and patient lose. So I live from scan to scan, and the scan that would have been this week won't happen until May 4th.
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Subject: CT good, stop holding your breath Tumor Interest Group Episode 28 Day 234 (6th anniversary of quitting smoking) So, Met with Benton, my oncologist, looked at Monday's CT compared with the last one (2/26/2015). My paranoid, fight or flight reptile brain had read my strange sensations — not actually pain, but a stretched, tender feeling in an oval from sternum to the port on my right chest, about where the tumor is — as an indication, threat, of tumor growth and tumor pushing on who knows what. But the CT showed the tumor reduced again. The dimensions compared: Feb.: 4.5cm x 3.3 cm, May: 4cm x 3 cm. Does not seem like much, but the volume of the tumor, as best as I can calculate it, went from 25.6 cm^3 to 18.8 cm^3, a reduction of a bit more than ¼. That seems to make the $152,500 per year that the taxpayers and my insuranceare paying for my chemo drug, pemetrexed, a bargain. But that view is positional, of course. And thank you for worrying. Jan
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Email of 2015/5/28 Subject: Maine musings Tumor Interest Group Episode 29 Day: 256 Notes: Any number of things run through my mind, especially back in Maine, where the fair May temperatures are more conducive to free association than the "real feel" 100 + of late April, Key West. First I read, then I noticed, so no credit to me on this, but I no longer get prune-skin fingers/toes from being in water too long. In the book Rain, A Cultural and Natural History I found that this increased gripping mechanism was naturally selected for in wet environments, like rain forests, and is controlled by the autonomous nervous system, the one you don't have to pay attention to.People with damaged peripheral nerves don't get the signal, so they don't get pruney. Without the increased ability to grip when wet, we must be extra careful around bananas in the rain and remember to wear our galoshes. "Slippery When Wet" was my go-to answer when anyone asked my sign (it was the old days, right? Not my fault, OK?). Now that has come true. Yesterday's (5/27) Wall Street Journal carried the following story on the front page: "New Push Ties Cost of Drugs To How Well They Work", by Peter Loftus. The NY Daily News would have had a snappier hed, like "Die Faster, Save Money", but the story was interesting and pregnant with possibilities. Companies that manage prescription drug benefits for employers and insurers, like CVS Health Corp. and Express Scripts, want to negotiate payments to drug companies, especially for cancer drugs, so that what they pay reflects better what patients get in terms of outcomes. Don't live much longer than with placebo (less than two extra weeks for pancreatic cancer patients using Tarceva from Roche Holdings and Astellas Pharma)? Why should you pay more than the cost of a sugar pill? But the same drug gave lung cancer patients an extra 3.5 months when compared to standard chemo. So the question is, what is 3 months worth to you? In Canada, probably more for summer than for winter, the reverse in Argentina. Basing the price on effectiveness is known as an indication-specific arrangement. One calculation published in JAMA last year had the cost of Eli Lilly's cancer drug Erbitux (Motto: "Cancer is my enemy and I'm determined to fight.") I will not bow to cancer But fight with stubborn resolve I will face the challenges ahead And look bravely forward." A month's worth of Erbitux, currently $10,320, would drop to $470 for use with metastatic head and neck cancer. Can you overhear the Dr./Patient/Financial Counselor conversation? Dr.: "Actually when I say the tumor is progressing that may sound good, but only for the cancer; it's bad news for you. Without a viable alternative, you should start getting your affairs in order sooner rather than later." Patient: "Oh, no. Is there anything that can help me?" Dr.: "I'm afraid not. At least, not in your under-insured budget." FC: "The good news is that we can get you on Erbitux - the Ei Lily drug with those great poetic ads? - It's on sale: for you, I can get 90% off. Of course if it works, the cost will skyrocket from there. Bur we should hope for the best." Patient: "How are we defining the best?" Dr.: "It all depends on your point of view, but there's no reason to be selfish here."
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Subject: inventory Tumor Interest Group Episode 30 Day 267 What we talk about when we talk about pain. Thanks To Raymond Carver, we all have a perfect title when we want to talk about anything weighty and mysterious, personal and universal, minute and overwhelming. That is, anything human. As it turns out, that doesn't make it any easier to figure out how to talk about it.But Carver knew that, too. 06/05 Yesterday was a hard day, more about that later. But I spent the day, and a few days before it, focused on the feeling, perception of feeling, measurements of feeling, and relativization of pain. Early October, when I first met with David Benton, my oncologist, after a chest x-ray, CT, MRI, PET, EBUS, biopsy, and the first dose of radiation, I started being handed a cornucopia of prescriptions, many for nausea, several to combat the travails of chemotherapies, and two for pain - morphine sulfate, a liquid, and oxycodone, a very small, white, tablet, one side shiny and smooth, one side with ‘A’ and ’04’ separated by an indention for cutting in half. Over the course of the last eight months I have been told, by everyone I come in contact with, to take the pain meds ‘PRN’ - pro re nata, “as things stand”, meaning as needed - without regard. No one seems to care anymore if a terminally ill patient becomes a junky. Indulgence is the new Stoicism. Hedonism is the new Puritanism. And for months there has been almost no what I would call actual pain. Numbness, yes; odd, occasionally sharp, feelings in my chest, yes. But stabbing, gunshot, loss-of-limb pain? No. Kidney stone, birth, Taser in the back pain? No. Baseball bat in the groin pain? No. Stop and I'll tell you what you want to know pain? No. So what kind of pain? Worth-meds pain or not? So an inventory, point by point. Feet 06/07 Writer, you can't be serious. A list of woe points is of no interest to anyone except a hypochondriac. But it's what I am trying to figure out how to think about, trying to watch from above as well as head on, so this is the real world for the moment. Very much like the unexpected chemo side effects, the short stabs and deep draws and interior poking around, the waves of passing numbness, a new, puffy pillow in my lower back, and tenderness in an armpit are at all not as imagined. Well, I don't really know what I imagined. Considering how specific but nebulous, universal and personal the idea of pain is, I don't even know what I've got, except that (a) its really annoying, and (b) pain meds make it go away, so I'm doing the looks-like, walks-like game and calling it pain for lack of a better term. So, numbness of the hands and feet - walking around on imaginary calluses, not knowing if your leg is numb or just your finger tips; that large, hard, numb mass where the cisplatin poured into my right forearm instead of the vein - those are well understood now, ever present, old acquaintances. But passing clouds of numbness - floating into and over my left knee, occupying my right thorax, front or back - are new. Numbness isn't pain, and isn't changed by taking a pill. It's pain's opposite, but still, who wants it? The pain-pain comes in flashes of images - a small, pointy blade unfolds in my chest, pokes me for a second, then closes and moves on. A thumb is poked hard into the space under one of my ribs, and twisted around. Electricity jumps down my left wrist and thumb - a wholly different problem, of course. The strain of opioid-induced constipation seems to make my disintegrating hip bones collapse into a pile of puffy grit surrounding my spine. (The picture of dying like Elvis passes through my mind) A deep breath extends the rubber bands slightly too far. Small, sharp things - maybe kids' jacks -tumble around in my chest, then go back in the toy box. Someone grabs my right armpit from behind and squeezes sharply. Jan