Indeed. For a longer time than anticipated. For years, I’ve been telling my kids that my generation will be the last one to die routinely of cancer. This turns out to be a misconception based on ignorance and naivety. Don’t get me wrong. Cancer treatment has advanced spectacularly in the past 20 years, and looks to advance exponentially over the next 20. The F1 generation may be too soon, though. Maybe it’ll be THEIR kids who don’t die of cancer.
“Cancer” is a rubric for an enormous range of physiological difficulties. Some cancers are caused by spontaneous mutations, some are triggered by environmental causes, some, like childhood leukemia, by insufficient immunologic challenge early in life (i.e., keeping kids away from numerous relatively benign childhood disease microbes makes their immune system ineffective when leukemia begins) [1]. Some, perhaps many, cancers will have relatively simple and painless cures via emerging technologies such as molecular engineering, protein chemistry, and nanotech therapies. Others will grind on as they have for millennia, taking lives prematurely or controlled only by painful and debilitating treatment methods. And of course there’s the conspiracy theory—that “big pharma” and “big government” know how to cure cancer, but suppress said cure out of greedy self-interest [2].
There is hope, however, that one of the worst-case scenarios in my personal case could end up being complicated but not flat-out tragic. A story circulated on CNN this week [3] about a guy in Europe whose nasty malignancy required excising his larynx. An artificial larynx, custom fit, was constructed of flexible polymers. Then the prosthetic larynx was put in a bath with some stem cells harvested from the guy’s marrow. The stem cells built a film of tissue around the prosthesis, which was inserted without difficulty (article says he successfully coughed two days after the reconstruction surgery) and, since it was genetically appropriate, his immune system did not reject it.
I’m assuming that if Dr. H decides my larynx needs to go, they’ll grow me a new one.
I’ve been back at work for a couple of weeks now. On the same three day cycle I’ve been on throughout and after treatment, I get acutely week, feel like hell, and have to leave early for a nap. Plus my mornings are pretty hungover, a consequence of the pain killers I still need and difficulty getting the amount of sleep I also need. So I usually arrive late at the office. But at least I’m around to GO to the office! That, and the fact that I am just beginning to be able to get yoghurt, applesauce, and undiluted canned condensed soup into my GIT by mouth are enormously encouraging.
Still, having cancer brings mortality into sharp focus. Here’s a good “end of the road” game. Who would you trade your life for? I don’t mean family and friends, we’d all go there. Is there someone in history whose life was cut short that you think could have accomplished so much that if you had the choice, you’d let the Fates take your life in place of that person’s? I thought of some of the obvious ones—Martin Luther King Jr., JFK, Jimi Hendrix. John Coltrane. But you know, they all changed the world with the life they had. Possible they’d do much more with more time, but they already had given us more than we had before. For me, I’m thinking maybe Buddy Holly. I listened to the 6 disk compilation Hip-O Select put out a few years ago on my office commute this week. In 200 recorded tracks, Holly made it clear not only that he was a genius, but he was gonna change the world. For the better. The potential for good will, humor, and music that died with him is a tragic loss. If I had the choice, I’d think very hard about taking a seat on that plane in his place. If I’ve managed to make a few dozen people’s lives funnier and more interesting, Holly would’ve done the same and more for millions.
The message isn’t morbid. It’s that we all have that kind of potential. Most of us don’t realize it. I suggest we kick ourselves into gear every day and make things funnier, fairer, and better for as many people as we can. That’s a good practical use to make of the knowledge that we ain’t gonna be around forever!
Remind me to tell you about the time I met a guy who played with Holly in Clovis, New Mexico. I got a photo of his photo playing with Holly and the Crickets, and I got him to autograph a napkin for me. Awesome, no?
PS. I’ll have all the weblogs updated this weekend. As the weekend goes by, check out http://theresaturtleinmysoup.blogspot.com/, http://sustainablebiospheredotnet.blogspot.com/, and http://docviper.livejournal.com/. By Sunday night there’ll be good new material up at all of them. Thanks for stoppin’ by. Y’all are keeping me alive!!!
Notes
[1] An interesting and readable summary of causes and cures of various cancers is Mel Greaves’ 2000 book from Oxford University Press “Cancer: the evolutionary legacy”.
[2] For the conspiracy theory (of COURSE there’s a conspiracy theory) see http://www.organicconsumers.org/foodsafety/cancercure050405.cfm . For a compact debunking, http://www.cancersolution.tk/2011/05/conspiracy-theory.html .
[3] Link to CNN article is http://www.cnn.com/2011/HEALTH/07/07/trachea.transplant/index.html
Clearly there are amazing implications of this technology far beyond larynx cancer.
My tumors are characteristic of heavy tobacco use. The docs are all shocked to learn that I’ve never smoked, chewed, or dipped. But that doesn’t mean I’ve been risk-free. Behavioral risk factors for oral cancers include consumption of beverage alcohol. I’ve also habitually used alcohol-based mouthwash more-than-daily for nearly 50 years. In fact, since I was in my mid-twenties I’ve had a tendency to get low-level gum infections which I fought by swishing mouthwash nearly continuously for days on end. I was doing that for the pain in my mouth right up to the point that the cancer was diagnosed.
Oh. I’ve also chewed betel nuts [1]. Admittedly it was only for a week, when I worked with big game hunters on Guam 24 hours a day. They chewed to keep themselves wired and got a kick out of turning me on to chewing. Betel had recently been made illegal in the U.S. When I got to airport in Honolulu to head back to the east coast, I remembered I had a pocket full of slivered betel nuts and was chewing them pretty much full time. I had to ditch them in a wastebasket before I went through security.
I saw my surgeon earlier in the week. He took one look into my throat and said “ok, so, it’s still a mess in there. I won’t be able to see a thing for weeks. Make an appointment a month out.” It was still a productive visit. I’ve been trying to wean myself off pain killers and other drugs. He said he expects I still need pain killers. That was a relief. I’ve been feeling like such a weenie, thinking the pain should be gone and here I am still hurting. Dr. H says it’s a minimum 10 weeks, and usually more like 12, for the radiation impacts to cease. Apparently the residual radiation is still killing cells and playing general havoc with mucous membranes and other tissues. My lower lip is constantly sore and shedding skin. I imagine when it heals up I’ll be free of the residual radiation effects.
Made it out to the Eastern Shore thanks to Dan and Liz, and got to see Paul and Linda back visiting from Australia, Mike and Laura, and others in the circle. After 3 hours of basically sitting on my butt, I was exhausted and had to return home. Sigh.
The longer this stretches out, the more worried I am about ongoing quality-of-life. Not that I’m ungrateful to be alive at this point. There are at least a couple of ways I could have screwed this up so that I wouldn’t be here tonight to write this. But my swallowing apparatus is painfully crippled, and it’s possible that that’ll be permanent. With one of my largest salivary glands gone, my mouth alternates between being too dry and running with thick mucous. The docs claim the latter should go away with the radiation residue, but I’m not so sure.
But no sense in whining. Thanks for stopping by. I have not updated the other weblogs. I have good material for all of them, I just haven’t made it over to do it. I’ll come back here and leave a note when I get the others up-to-date. Thanks!!!
Notes
[1] Mel Greaves, in Cancer: The Evolutionary Legacy (Oxford University Press 2000) says chewing betel quid is associated with oral and throat cancers in India. I was chewing just the betel nuts, without additives such as cloves, tobacco, and weirder medicinal plant products. And oddly, I got the opposite effect from the locals, who claimed betel was a stimulant. I actually found it soothing and sedative. Of course, we were working pretty much 24 hours a day for a couple of weeks, so sleep and general collapse into sloth were natural trajectories for my physiology.
I continue to deal with the physiological fallout of cancer, radiation, and chemotherapy. Still unable to eat solid food, voice remains a wreck, weakness is constant. I even have periodic serious pain in my throat, and I have no idea where that’s coming from. I must admit to being shocked at the brutality of the treatment and the length of time it’s taking to recover.
I started to think I’m malingering. That I’m actually fully recovered, but my brain/body refuse to recognize it and that I’m just taking the opportunity to be lazy. But then I look at myself in the mirror, and I realize that even my skin where the radiation was strongest has yet to heal. It’s still brown (burned) and peeling. I guess I really am still recovering.
But there’s no sense whining about it. It’s a passage that must be made.
The physical effects are just a fact of life. Giving us an opportunity to at least start to deal with the emotional and psychological wreckage. For one thing, at 58 years old, it’s much clearer and more emphatic now that I’m walking on the backslope of life. That’s the kind of thing you can know in your rational being, but not feel in your bones. Until something like this happens, and you get a peak over the precipice.
Meaning, I suppose, that I should look back over my life and see what I think. Let’s start with the things I’ve tried to teach my kids. There are 4 golden rules for their teenage years. I chanted these like a mantra to them every time they went out. They go like this: Don’t Drink and Drive; Don’t Get in the Car With a Drinking Driver; If You Have Sex, Use a Condom; If You Do Injectable Narcotics, Don’t Share Needles. Those seem fundamental enough, no?
When they were younger, we had a dozen or so rules pasted on the refrigerator. I can’t remember them all, but some of them were: wear comfortable shoes; tell the truth (people are always shocked); clean up your own messes; have a sense of humor; and get a cookbook for Dad on holidays. OK, it’s not quite as fundamental as their teenage rules. They had fewer ways to kill themselves then.
I suppose the proof is in the outcome. With 3 bright, successful children, lacking obvious emotional scars and smarter and funnier than I am, I’m content. And it’s all still good advice!
The real facts that come into sharp focus after a bout with life-threatening cancer are, as Morgan Freeman says in outstanding Science Network series Through the Wormhole, “Life is short and time is precious.” I’ve spent my life living, mostly, in the future. The present was just the stepping stone to the next thing coming up. Now? Well, I’m teaching myself to appreciate and understand right now. Because it’s clear that, under many realistic scenarios yet to play out, that may well be all I have. I commend this lesson to you for your own consideration.
Thanks for stopping by. Y’all are helping to keep me alive by reading these blogs. There’s new stuff up at http://docviper.livejournal.com/ . The other two sites, http://theresaturtleinmysoup.blogspot.com/ and http://sustainablebiospheredotnet.blogspot.com/ have yet to be updated from two weeks ago. I will attend to them this week. Thanks again!
Following the Hiroshima and Nagasaki bombings, radiation-exposure deaths peaked at about 4 weeks and continued until 8 weeks [1]. This timeline possibly explains why I am still so sick. I remain unable to eat (except for feeding myself U.N. emergency rations through the feeding tube to my gut), I get tired after a couple hours of being upright, and my throat hurts like a son-of-a-bitch if I talk for more than 20 or 30 seconds at a shot.
With that whining out of the way, I’m definitely getting better. Except for occasional waves of stinging pain and runny mucous in my throat, I’m mostly pain-free and my mouth functions. Still can’t talk coherently, and some of that may be permanent because the primary tumor took tongue mass with it when it croaked. But I think at least some of the voice issues are residual from the radiation and will heal themselves.
I wrote the two paragraphs above last night as I was trying to get to sleep while flopping the TV between the soccer game and Bitchin’ Kitchen. Weak as I am during the day, sleep remains elusive at night. Although that seems to be getting better as well. Anyway, I had a little bit of a breakthrough today. Able to eat a cup of chicken broth with egg. You might recall from a prior entry that that is Tier 2 on the Italian Household Illness Remedy scale, one better than plain broth and below “with grated cheese” and “with grated cheese and peas”. So it’s a start toward recovery, as recognized by the Counsel of Ancient Aunties.
I would’ve figured I’d be further along by now.
There’s new material over at http://docviper.livejournal.com/ . The other two sites I’ll try to update later in the week. Thanks for stoppin’ by!
Notes
[1] According to http://www.atomicarchive.com/Docs/MED/med_chp22.shtml which seems to be well researched and referenced.
Marie Sklodowska-Curie did much of her work on radioactivity and radioactive elements in a little shed serving as a general laboratory. She carted test tubes hot enough to glow in her pockets. Her papers from the 1890s, including her cookbooks, for crap’s sake, are too radioactive to be safe. They are kept under lead shields and access requires protective measures. Unsurprisingly, she died of radiation-related aplastic anemia.
My treatment consisted of two-a-day radiation exposures 5 days a week for many weeks. Of course, the technology is awesome, and allows the radiation to be focused precisely on the tumors, primary and secondaries, each in their turn. The big machine is choreographed to shift around, rotate, move across, move in, and at one point in the dance the table I’m lying on jumps itself up and forward about a quarter meter.
Here’s me under the complex
radiation exposure machinery.
Since the tissues the therapeutic doses of radiation are focused on are already malignant, I’m not really worried about the potential for triggering future malevolent mutations. But the technicians work in a room in which I am hard-imaged the entire treatment time. The following photos show the different kinds of images they have access to and use to control the process. You see there are both real photo-quality images and other images built from the 3D photo images.
Now, I don’t know what kind of radiation they use to produce the basic image and associated satellite images. But it seems a sure bet that it’s bathing more than my tumors in radioactivity. I’m sure with a little research I could figure out how to estimate the increased likelihood of triggering a de novo malignancy via the imaging radiation.
But not now. The treatment to date has been successful, the primary tumor is largely toast and the secondaries are shriveled to raisiny, maybe sun-dried-tomato, status. M. Curie traded part of her life for the science driven by her radiation exposure. In other words, it was worth it to her. Given the advanced state of my tumors when I presented for treatment, I’m right there with her. New tumors later? We’ll deal with ‘em if we have to. Until then, a (non-alcoholic) toast in the memory of my tumors.
More detail to follow. Soon they’ll start the diagnostics all over again with a PET scan to localize metabolically active tissue and a neck dissection to check it out. For the moment, believe me, I’m just glad to be here!
Newish material is up at all the web logs, if you get a chance check out http://docviper.livejournal.com/, http://theresaturleinmysoup.blogspot.com/, and http:sustainablebiospheredotnet.blogspot.com/ . Thanks!
PS—for anybody who’s been looking for me via email. I’ve been too sick the past week and a half to get to it with any regularity. I should be getting on top of it now, though. Apologies.
Bone marrow. It’s nutritious. It’s considered a sign of cultural sophistication of hunter-gatherer societies if they took the time and made the effort to harvest marrow from the long bones of larger kills. Hyena jaws are specially adapted to crack bones in a spiral, allowing access to the marrow within.
It’s delicious. During the centuries of British empire, special spoons were used to slip the marrow from the bone cavity and onto crisp toast. Today, a high-end Italian seafood place in New York City serves a very popular dish of octopus cooked in a rather Sicilian fashion with chunks of beef marrow added to enrich the sauce.
And it is the driver of discomfort in the intermediate recovery time following aggressive cancer treatment. Chemotherapeutic drugs see the world through a very coarse—actually, bicameral—filter. Tissue got metabolism and reproduction at moderate, steady levels? All’s fine—don’t attack. Tissue cranking metabolically, doing stuff, sweating, swearing, working hard all the time? TORA! TORA! TORA!
Of course, tumor tissue has lost its physiological constraints. The primary characteristic of tumors is that they grow without reason, without control.
In a normal, healthy human body, your blood is, along with your skin, at the forefront of your interactions within and beyond your own self. White blood cells of various kinds hunt and kill pathogens and kick your anti-invasion responses into gear. WBCs have life spans on the order of weeks to months. Red blood cells, of course, do the oxygen-per-carbon dioxide gas exchange that keeps your aerobic self going at all times. They live about 6 months each.
Which means your bone marrow, where the WBCs and RBCs are manufactured, is about as metabolically active as tissue can get. And therefore a favored target of the chemotherapeutic pharmaceuticals.
Which is icky. You need strong, functional bone marrow. Without it, you get anemic and have to have somebody else’s RBCs transfused into your blood. Without it, you get weak and susceptible to infection. Part of what drove me to hospital admittance last week was serious anemia. And I’m still incredibly weak. So far the exercise I’ve been able to muster on a daily basis is a short walk in the Patuxent Natural Area across town, where I can snap photos of butterflies and garter snakes. I’m good for about 45 minutes total hiking. Then I need a nap.
But I’m building strength. I saw the dentist today, he says my mouth is in great shape (for someone in my condition, I believe he means). The radiation sores are slowly shrinking, the remaining seriously painful ones are at the very back of my tongue and on my throat mucosa. I can sleep without aspirating the thick, sticky saliva generated by my crippled salivary glands.
So I’m getting there. Hopefully my weblog correspondence will pick up. Actually I have new material over at http://www.docviper.livejournal.com/ and http://sustainablebiospheredotnet.blogspot.com/. Tomorrow I’ll mix down another acoustic demo and post it for you at http://theresaturtleinmysoup.blogspot.com/. And over the weekend, I’ll get the whole blog empire coordinated and updated again.
Thanks for stoppin’ by. Knowing you’re out there to read this stuff once in a while is a big part of what’s keepin’ me alive through the dark days. And with your help, I’m pretty sure I can see a glimmer of daylight down the path. Thanks again—and remember I love you all, from oldest dearest friends to casual acquaintances and lost and confused surfers.
Hopefully, now that I’m out of the hospital and the violence seems to have passed, not AS messy.
My muscles think they’re tired of lying in bed. It’s like having “restless leg syndrome” throughout my anatomy. Everything is screaming to get the hell up and go. Until I do. Then my intensely weak physiology gives it up and wants to get back down. Until it forgets and wants to get up… .
You get the dilemma. The wracking pain and nausea of last weekend have been replaced by this enervation. Going up or down the stairs is a major undertaking, sometimes featuring, if nobody is around to observe, me crawling down backwards on hands and knees. Getting to the toilet involves 20 minute internal debates regarding payoff vs. level-of-effort. Getting to my feeding station halfway across the bedroom floor is a Herculean effort.
And when I get there, sit still and start to feed the UN emergency rations into my gut tube? Why, my muscles are convinced they want to get up and wander around.
This is incredibly uncomfortable!
