We spend our todays with the aftermath of yesterdays, tomorrows with the aftermath of todays. At some point in our lives, we start dealing largely with the accumulation of what we’ve done before. I wonder when we make that transition, from building our selves-to-be to managing the sum of our lives-to-date? Human culture as a whole is mostly our attempt to steer the enormous, momentum-bound, awkward heap of history in some direction, any direction, other than its own random slide toward the future.
Cancer is, of course, largely a today representing the sum of yesterdays. At some point an inflammation becomes self-sustaining, eventually genetic material in the area mutates, and cellular constraints shut down in favor of runaway replication. In my case, the inflammatory influence was probably the combined, chronic presence of ethanol—a highly carcinogenic chemical—on my tongue, from beverage alcohol and from mouthwash, and who knows, maybe from decades of daily spritzing with asthma inhalers.
But the thing about cancer survival, at least in context of the present level of treatment technology, is that you’ve swapped a long time…a lifetime…of dealing with the outcomes of treatment for the outcome (inevitably, death) of the cancer itself.
This bit of insight, such as it is, came to me last week when my lymphedema therapy team told me it was time to start working on my shoulder. My shoulder? What the hell, my face is still full of loose lymph fluid, and needs the massage to shift it around and break up the scar tissues that prevent if from being resorbed from more functional parts of my body. True, the therapists allowed, but that left shoulder is misshapen and dysfunctional, an artifact of the nerve trunks cut inevitably during the three rounds of surgery it took to finalize the status of my lymphatics.
And right they are. Certain specific muscles in my left arm system no longer work. I can’t lift that arm beyond horizontal in the dorso-ventral plane (that is, straight up from my knee to over my head sticking straight out to the left). This is not such a tragedy for someone like me, whose life doesn’t depend on physical acumen. However, the therapists are careful to demonstrate that certain muscles are atrophied, parts of my joints are freezing as others compensate, and that in general I need to be responsible and responsive and do specific exercises as needed.
But this is on top of daily exercises for my tongue strength (and speaking and eating abilities), lymph fluid control (self-massage and lengthy hours of mask-wearing), and attempting to generally reconstitute my physical condition after more than a year of letting it go to hell. Basically, my days are frickin’ out of time. After such necessities as earning a living, getting some sleep, and doing a little writing and reading, four exercise regimes are more than I can handle on a daily basis.
Ah, well, at least I’m here to complain about it! Later this week I’m in Europe, a week-and-a-half after that, in Asia. I expect hiking around Berlin and Mindanao to go a long way toward restoring my general physical health. So, for today, check out the professional blog at http://aehsfoundation.org/ . I haven’t updated the other three weblogs. Starting the end of this week, there should be travelogue and photos from Germany showing up at http://doviper.livejournal.com/ , and I’ll keep this weekly diary complete. Thanks for stoppin’ by, everyone. Guten nagen!
Indeed, it HAS gotten messy. Adam Yauch. Member of genius rock band The Beastie Boys. Mastermind of the series of Free Tibet concerts and concepts. Dead at 47 of parotid gland cancer. Same cancer I had. Apparently Yauch’s was his primary tumor, mine was secondary to the big fat one on my tongue. Yauch had radiation therapy and surgery, fought for two years. And gave it up last week.
Time to pull out that copy of “Lincense to Ill” you almost forgot you had back there on the CD shelf and play it. Loud. Pure, sheer genius. And fun!
Adam Yauch is dead and I’m still here. What can that possibly mean? Well, seems likely it means either the universe isn’t paying attention, got the wrong guy, or doesn’t really give a rat’s ass. I’m guessing the latter, but am not prepared to go the whole philosophical way down that road. I AM, however, prepared to give you an excellent image of a rat’s ass:
Used this one several times in professional emails the past few weeks. And I wonder why my career is in the toilet.
Anyway. There’s an interesting undercurrent bubbling around the cancer treatment groups at the Greater Baltimore Medical Center. I first got a whiff of it…did I just mix a metaphor beyond recognition? Oh well. I first got wind of it...for some reason that sounds less mixed, although still marginal…when I was getting reports on the weekly faculty/doctor/tech meetings where they go over active cases and review progress and planning. The radiation oncology folks would often let slip that the surgeons couldn’t help themselves from cutting so much that treatment was physically tough and recovery and long-term quality of life were difficult. The surgeons said the same things about the radiation people. Ongoing battle, no easy solution. And I didn’t give a rat’s ass (see above) because they’d saved my life at least twice and I could fight through the post-treatment quality of life issues.
So now I’m in twice weekly lymphedema therapy, where the primary issue is to mobilize the lymph fluid trapped around my jaw by the excision of most of my lymph system north of my shoulders, and move it someplace where it can be resorbed by the circulatory system. The therapists like the fact that Dr. H left corridors beneath each ear unscarred by surgery, but are intensely frustrated by the long scars under my throat, two of them in parallel because of the need for three successive surgical ventures to stem the runaway flux of lymph from my ruined lymphatic system. The therapists had me scheduled for a special visit last week—they are running an impromptu “education series” for the surgeons to show them lymphedema patients by way of trying to convince them to think about post-treatment quality of life in planning surgery.
The therapists almost had me on board. Until one of them said in frustration “Those surgeons. They’re always so concerned about saving lives, they forget about quality of life.” And I’m thinking…uhh…maybe under the circumstances that’s not really a bad thing. But what the hell. I’m willing to be a demo dummy for doctor education.
After all, I will never make as much of a contribution to the world as Adam Yauch. So I gotta do what I can.
Thanks for visiting, y’all. Check out professional blog at http://aehsfoundation.org/, nature photos at http://docviper.livejournal.com/, and urban ecosystems book chapter at http://sustainablebiospheredotnet.blogspot.com/ . Most of all, check out the wonder of springtime returning to the northern hemisphere (autumn for those of you in the antipodes). It’s a wonderful world—enjoy it with whatever faculties and body parts you got left!
It Might Get Messy
A long time ago, in a galaxy far, far away…that is, when I was a teenager…we were really, really stupid. By which I mean me and my friends. We were particularly stupid in terms of dental health. Specifically, we played a lot of ice hockey without protective gear beyond shin pads. My father, to his eternal grace, insisted I, as a none-too-effective goaltender, wear one of the first commercially available clear fiberglass facemasks. Nobody else wore squat. So that young Master H, pretty much our only true right-handed right winger, who tended to drink heavily before our late-night sorties to whatever rink we’d managed to rent for an hour late on a weekend night, occasionally knocked himself out by sliding headlong into the boards on otherwise graceful breakaways. His incisors chipped themselves away little by little over the years we played. Then there was esteemed Mr. F, refugee from Hawaii, bass player extraordinaire, and defenseman of no mean skills. One surprisingly late spring in a pickup game on Pompton Lake itself (this was before global warming, mind you), Mr. F caught a stick in the face and lost several teeth. We had him driven to the ER while the rest of us searched fruitlessly for his teeth on the roughed out rink, melting chunks of blood and ice to try to recover the missing dentition. We never did. Mr. F got a nice bridge, which interfered not a whit with his bass playing and even occasional background vocals.
In my case, it may not get as messy dentally or cosmetically as it might have. When I saw Dr. H a month ago, he noted that part of my infected jawbone was still exposed. Since I had an appointment with the oncology dentist a month later, he let it go after renewing my scrip for massively toxic antibiotics. I saw the dentist this week. He says my jaw is completely healed—no exposed bone, no infection. I can go back to my regular dentist and regularly scheduled dental hygiene. I forgot to ask him if I should go off the antibiotics, but since the dentist reported no exposed or infected bone, I’m giving it a shot.
I also saw my lymphedema therapist, Physical Therapist K. She does a very odd sort of massage, gently sliding loose lymph liquid along under my skin to the bits of surviving lymph vessels under my ears, where Dr. H kindly left me unscarred (PT K says that’s a bonus of Dr. H’s skill, that people in my condition generally are cut ear-to-ear and there is no easy place to corral the lymph). She also works to break up the two lengthy scars across my throat and jaw. Two because of the need for three surgical ventures to stem the flow of lymph after my nodes were excised. If the scars can be broken up or at least separated from the underlying muscle masses, the loose lymph fluid can slip away into my neck and chest. But it’s a long-term process. Weeks and weeks more therapy to go.
And I’m good for that. It’s working. My swallowing is better—I can eat at least a bit of solid food and swallow it essentially any time. My face is more symmetrical (it’s never actually been symmetrical, one side being higher than the other. But the lymphedema makes it really misshapen). And it feels better. I gotta wear a bizarre grade B horror movie style mask to help move the lymph around, see following photos:
But again, I’m ok with this. With the infection in my jaw gone, my last real pain is gone. I can function. I’m putting on weight. Basically, I’m making progress. Excellent progress. So here’s the lesson for you, my friends. If I, with my low-to-no pain threshold, complete lack of personal discipline, and none-too-sturdy psychological response to physical challenges, can make it through a year-and-change of cancer therapy and recovery, any and all of you can too. Should the time come—and much as we can hope it won’t, nearly a third of us will die of some sort of cancer-related illness—you can get through something like this. Because if I can, anybody can.
And that’s this week’s lesson. Hang in there, all. Thanks for being here for me. I’m grateful beyond words. And, BTW, my voice continues to improve. Soon, even my words will be understandable! Don’t forget to check a few nature photos over at http://docviper.livejournal.com/, an urban ecosystems book chapter at http://sustainablebiospheredotnet.blogspot.com/, and my professional sustainability weblog and daily pick-of-the-web for Twitter and Facebook at http://www.aehsfoundation.org/ . Thanks again!
What a week. First Dick Clark, then Levon Helm. The latter of “complications” associated with the throat cancer he had treated BEFORE his last 4 albums!
Helm is my cancer hero. When I sit on the deck with my guitar and try to sing and it sounds like shit (well, more like shit than it used to, which is saying something), I tell myself that Helm got through it and made 4 albums and did hundreds of concerts during his cancer recovery. Of course, I’m no Levon Helm. But he gives me something to shoot for!
The most humorous aspects of my now a year plus some months dealing with cancer have consistently involved travel. You might recall the slapstick of my train trip to Boston, recounted earlier in this weblog. I guarantee you the trip I made to Knoxville, Tennessee (right up there with Gatlinburg as a tourist destination, I should point out), managed to make that Boston trip look like a “2” on a humor scale where the movie Airplane is a “10”.
First, there is the matter of food. I’ve always been a big fan of road food. Nobody liked the hotdogs in the Cleveland airport, or Harlan’s Barbecue in Houston, better than me. Hell, even the Popeye’s Chicken place in B concourse in Atlanta is near and dear to my heart. Now, of course, without a convenient rest room and a little privacy to keep my throat clear, solid food is a bit awkward. And liquid food, beyond the alcoholic beverages that keep the salespeople who spend 6 days a week 50 weeks a year on the road sane, is hard to come by in airports. Best I could do on my way out was to dunk a cinnamon scone in my whole-milk decaf latte on my connection in Charlotte. Got about a third of it down, too.
Ate some rib (as in “one rib”) from Famous Dave’s in Knoxville. And purchased every drop of liquid Instant Breakfast from the local Kroger. Then had to prep for a teleconference to take place at 0400 the following morning, which made it 1000 hrs local time in the Czech Republic, focus of the meeting. This took some logistics legwork. Esteemed Dr. J, local ecologist, kindly lent me his security badge to access the Knoxville office in the pre-dawn, as the Microsoft Live Meeting software would not, of course, load onto my travel Mac. We considered every possible problem, and figured we had them covered.
Except. The company key badge doesn’t open the outer doors of the office building. Called Dr. J at 0330. He talked me through breaking into the building by defeating the security system by slipping a shiv through the door jambs to trigger the internal motion detector. So there I am at 0345, in an office building adjacent to a major highway, breaking into the facility. Which I do. Then I sign onto the meeting, listen to the translation of everything into Czech, speak when spoken to, and hang up when so directed. Now it’s 0700. I hit the Kroger for a pack of bologna and one of Swiss cheese. Eat a couple rolls of each. Watch “Down Periscope” with Kelsey Grammar, which conveniently turns up on TV.
Head for the airport. Where’s there’s no viable food. Pass on the earlier flight available for a $50 premium. Then almost miss the Charlotte connection when the following flight is (predictably) late.
Arrive home dehydrated and hungry from 24 hours awake with just the remains of my bottled Instant Breakfast to survive on (and of course it can’t go through TSA security, despite my being patted down every frickin’ time because my medical port and feeding peg trigger the whole-body detector).
Sleep for 12 hours. Hit the hospital for lymphedema therapy. Get yelled at for not wearing my scary horror-movie lymphedema control mask.
Sigh. Now I’m re-learning The Weight in Levon’s memory. It’s only 5 chords. And sounds very good as a croaked sort of poetry-reading singing style. Like I said, my cancer-recovery hero!
Don't forget to check urban ecosystems book chapter at http://sustainablebiospheredotnet.blogspot.com/, nature photos at http://docviper.livejournal.com/, and this week's PeopleSystems at http://aehsfoundation.org/. Have a good week, everyone!
So pretty much the sum of Haymitch’s advice to Katniss Everdeen on her first trip into the Hunger Games arena is “find water”. And his first gift, in her second trip, is a spile to tap the trees for drinkable sap. This is because humans can generally survive quite a while on minimal calories, but essentially no time at all absent adequate hydration.
A long time ago, in a galaxy far, far away, two of us had a daily job of fighting our way several kilometers out onto an exposed and fairly remote tidal marsh in southern New Jersey to build cages that would exclude clapper rails (part of an experiment to determine how a relatively nontoxic mosquito larvicide was suppressing fiddler crab populations, see [1]). One particularly hot day, our return involved substantial slogging through really deep, warm, sticky anaerobic mud at low tide—several thousand meters of it. By the time we made it out of the mud and into floatable water, my compatriot was badly dehydrated. To the point of no sweat, serious headache, double vision, etc. Somewhere between heat prostration and heat stroke, with a dose of we-finished-our-jug-of-water-7-hours-ago-and-have-been-slogging-in-the-hot-sun-ever-since. And we were, at that point, still a good 45 minute boat trip away from our rented research cottage and at least a half hour from the nearest occupied spit of dry land. Not a good situation.
So we remembered all the survival advice we could piece together. Don’t drink salt water. Don’t drink urine. And that was pretty much the sum of our resources. We settled soon-to-be Doctor H into the shadiest side of the boat, and I slopped out and started opening the oysters that lined the banks of the tidal creek (remember Rule #1—never go anywhere without a knife!). They were pretty moist. Salty, but not nearly as salty as the sea water sloshing back into the bay. And for some reason they were cool. After slurping a dozen or so, STB Dr. H started to feel better. Another half dozen, and he thought he could survive the trip back. We hightailed it to the cottage, and I sped out for an X-large pizza with fresh garlic (specialty of the local shop), 12 pack of cold beer, and a couple gallons of store-bought lemonade. Next day, the only aftereffects was the distinct smell of garlic wafting out with STB Dr. H’s now re-started sweat.
I bring this up because somehow my ability to consume solid (ish) food seems to be returning. I’ve been to lymphedema therapy twice in the past week. Therapy consists mostly of massage, and I have a weird low-budget horror movie looking face mask thing to wear at night to help work the loose lymph from my swollen jaw and throat back into the shards of my functional lymphatics where the surgery scars stop under my ears. I’m not certain whether or if so how that therapy might be doing it. But the last couple days, I’ve eaten some ice cream filled with cakey stuff (chunks of Oreo cookies), and today nearly an entire one-egg egg salad. Now, of course, I’m too stuffed to move, since I also did a heavy hike today in the heat and needed to rehydrate. Which I did with thick chocolate milk (not fresh-in-the-field oysters).
But this is a big step. I can eat stuff without choking on it. It still balls up in my throat, but it seems to dissipate after a while, and it doesn’t hurt the way it did a few weeks ago. I haven’t been diligent with my oral exercises, having cut back on them since my jawbone got so fragile. But I have to get back to them. This may be a true step-in-the-right direction. I had lunch earlier in the week with a very dear and very long-time friend I’d long lost contact with. She had a salad, I had a latte.
Next time we’re out, I’m hoping I’m having a salad as well. Have a good week, everybody! Check out a few photos and other referentia over at http://docviper.livejournal.com/, don’t miss the first chapter of the urban ecosystems book at http://sustainablebiospheredotnet.blogspot.com/, and this week’s installment of PeopleSystems and Sustainability at https://www.aehsfoundation.org/ . Most of all, keep in mind that spring is pretty much here. We’ve walked away from one more winter, my friends. Not bad, under the circumstances. Not bad at all.
Notes
[1] Ward, D.V., B.L. Howes and D.F. Ludwig 1976. Interactive effects of predation pressure and insecticide (temefos) toxicity on populations of the marsh fiddler crab Uca pugnax. Marine Biology 35:119 – 126.
Every night in the tropics, right around midnight (local time around the world), little larval nematodes, comfortably curled inside tiny round membranes, appear in large numbers in the blood vessels near the skin of hundreds of millions (you read that right, 100s of millions, see references [1] and [2]) of people. Sleeping people, awake people, drinking people, dancing people, hunting people, fishing people, people just watching the moon and contemplating their own mortality. Mosquitos in the most common and abundant genera—Culex, Anopheles, and Aedes—insert their oddly specialized spike-supported sucking-straw mouthparts into the blood vessels of these people and exchange a bit of their saliva for a big slurp of the people’s blood.
Before you get too comfortable that is a tale of exotic foreign lands, you should consider that Aedes includes the very, very common salt marsh mosquito of the east coast of the United States, and that Anopheles and Culex populations are dense throughout North America. And Eurasia. And pretty much everywhere else.
Anyway. The mosquito saliva slips tiny, young larvae of the nematode Wuchereria bancrofti into the people’s bloodstream, and picks up a simultaneous load of the older larvae comfortably encased in their cozy little containers. Inside people (the only known host except for an obscure Malaysian monkey species), the larvae mature, lay eggs, hatch, and turn into the infective little buggers the mosquitos pick up. In the mosquitos, the larvae molt a couple of times and become sausage-shaped infectives, hanging around the salivary glands just waiting for their opportunity.
Wuchereria, and a couple of related nematodes, cause elephantiasis. As you are no doubt aware, elephantiasis is a nasty condition in which massive swelling of human tissues occurs because larval nematodes block up the lymphatic system. The lymph seeps out into the tissues, but not back into the clogged and broken vessels. People are disfigured and disabled. In enormous numbers.
My own lymph system has been surgically impaired in ways that parallel, qualitatively if not quantitatively, elephantiasis. With much of the lymph system north of my chest removed, and all the lymph glands in my jaws, neck, and shoulders gone, my face is full of lymphatic fluid that has no place to go.
So it might get messy. But it might look prettier. I went to “lymphedema clinic” this week for an initial diagnosis. Lymphedema is treatable by massage and exercise. Basically, the therapist gives the lymph additional space to spread out in, and over time it can be resorbed into healthy tissue. This is not just cosmetic—although in my case the cosmetics are not trivial. It is a real epidemiological threat. Lymph, especially loose lymph flushing around tissues in general, is protein-rich and a ready-made growth medium for infectious microbes. So, several week’s worth of therapy and exercise is an investment well made. Count me in.
And of course, it won’t make me pretty. But it’ll help get me back to my normal state of cosmetically marginal visual condition. And maybe even help my voice.
Thanks for being here, everyone. Spring is here! Check out some nifty nature photos over at http://docviper.livejournal.com/; the start of a chapter-by-chapter exposition of an upcoming book on urban ecosystems at http://sustainablebiospheredotnet.blogspot.com/; , and the week’s update at http://aehsfoundation.org/ . Love to each and every one of you!
Notes
[1] http://www.who.int/mediacentre/factsheets/fs102/en/
[2] Smyth, J.D. 1976. Introduction to animal parasitology. Cambridge University Press.
Head and neck cancers are rarish. They account for about 3% of U.S. cancers, most common in white males over 50 [1], meaning about 52,000 diagnoses annually. So far—aging, white—I fit the profile. But tobacco use is highly positively correlated, I’m clean on that axis. Unfortunately so is alcohol use (and we’ve already discussed my lifelong love affair with beverage alcohol and chronic application of alcohol-based oral care products), so I’m back in the doctors-can-only-shake-their-head-when-they-hear-about-your-lifestyle in the diagnostic history category. But it turns out there’s something else interesting. The Human Papiloma Virus (HPV) turns out to be related, quite possibly causally, to some head and neck cancers.
So, despite the anti-vaccine wack jobs populating the internet and public meetings nationwide, and the even wackier jobs populating the religious-intense wastelands of North America who think that disease-preventive vaccination is somehow going to turn their children into sexual predators (or prey, or something), there’s ANOTHER reason for a universal HPV vaccine. Real reductions in head and neck cancer rates.
As for me, I learned this week that despite vast improvement in my overall health, my jaw is still painful, I still get a head full of sticky mucous at the end of the day, and I can easily push my under-exercised physiology too far. I’ve managed to work my daily activity up to something over 1000 meters of “running” (read: “slow, painful, shuffling”) alternating with shooting 30 to 45 bolts with my 175 lb draw crossbow on the range at College Park. Believe me, between hauling a crossbow-safe target several hundred meters down to the backstops (don’t even THINK about trying to retrieve your bolts from backstops made for longbows, recurves, and compounds) and cocking and shooting for an hour or more, I get plenty of exercise.
So I was a little shocked to find that a quick business trip to Chicago, where I had to function for a day-and-a-half including a lengthy dinner with clients (great restaurant, wonderful service—Kinzie Chop House—the only thing I could deal with—the broth from the minestrone—was homemade beef stock. Incredible! And the lemoncello—made by the owner’s aged aunt—of course—awesome). Got to visit Beth and Maggie for a couple hours. Flew home, passed out, got up, drove to West Virginia where Dr. Y and family had rented an old-timey tourist cabin in a state park while attending a technical conference. Had a fabulous time, but was frickin’ exhausted by 10 pm last night, and am even more frickin’ exhausted now—just about precisely 10 pm—Sunday night.
So it’s still a struggle, my friends, but a struggle we’re winning, it seems. I go in for “lymphedema clinic” this week, where they’ll attempt to massage my lymph-swollen face back into some semblance of normalcy. I’m also getting much closer—very close—to getting all 4 weblogs in this little writing enterprise back up and going. For the moment, I’ll leave you with a few interesting photos.
A twig with the bark stripped by porcupines.
A soldier beetle guarding its territory.
A gorgeous little spring flower.
Thanks for being here, everyone. Spring is powering into the northern hemisphere, we’re just about back to bare feet and shorts. And parking butts on the beach. Yee Haa!!!
Notes
[1] http://www.medicalnewstoday.com/releases/243574.php
