Here’s a question for you. How is cancer like rugby? Answer—they both have a zillion obscure movies about them, and one each a “major” film. I must admit I’ve never actually seen “Love Story” (cancer’s big screen success), and I’ve only seen bits and pieces of “Invictus” (rugby’s). But I HAVE seen “The Guitar”, a very good, artsy, sexy, and original cancer film. Most of the rest of what you get if you search “cancer movie” on Amazon is crap. There’s an amazing number of “we-know-how-to-cure-cancer-but-the-evil-FDA-won’t-approve-our-treatment” films. And, to go with the general conspiracy stuff, there’s one claiming Cannabis cures cancer. At least the rugby movies make an attempt at being legitimate. Whether or not they succeed, I dunno. Haven’t watched ‘em.
When he peered into my mouth a couple weeks ago, Dr. H said “Hey, your throat looks better than I’ve ever seen it”. Then he said “Man, it’s still really swollen in there, though”. I pointed out that those statements seemed inconsistent. He said “no, I told you, it’s gonna take a couple years for that swelling to go away. For one year, you’re looking great”. I thought, but didn’t say, “%&*(*&^%$#$%^&*P{“.
Then I went home, put on my anti-lymphedema headgear, got some sleep, and flew to Europe. Where I spent a week choking down pasta, sausages, cheese, liver dumplings, smoked fish, jellied pork with horseradish sauce, and literally kilograms of white asparagus in every recipe imaginable. One night I drank two half-liter beers and a couple glasses of trocken Riesling, so dry it was almost sour. Oh, and gelato. Lots of gelato.
End of the week, my throat was REALLY swollen. But I’d only lost a few pounds, despite walking endless kilometers around Berlin on a daily basis, I’d managed to survive on actual solid food as opposed to Instant Breakfast and chocolate milk, and I’d convinced myself I could travel overseas without nutritional disaster.
Of course, that was in Europe, where a variety of cuisines are available, the tap water is potable, and bottled juices are available on every corner. Monday, I leave for the Philippines. I’ll spend one night in what is reputed to be a marginal hotel (i.e., tripadvisor.com reports that a fair proportion of the rooms support dense populations of roaches) in Manila. In Manila, at least, I expect to be able to find bottled juices and a variety of cuisines. After that, we head to Mindanao, which is a little more…exotic, and a lot more rural and remote. On Mindanao, the locals don’t speak Spanish or Tagalog, they speak a Malay or Javanese language. Falciporum malaria (the deadly species) is rampant. Drinking water in all forms is marginally hygienic at best. I have not idea what I’m gonna eat, but I’m guessing my throat is going to be even more swollen after this trip than the one to Germany.
On the plus side, Mindanao has four species of cobras, including one spitter and the King Cobra, many very cool species of arboreal colubrid snakes and countless viper and pitviper species, and more lizards, scorpions, frogs, and birds than you can imagine. I have my camera, my malaria prophylactic, and my Cipro in case of digestive system screw-ups.
My post cancer body may take something of a beating over the course of two weeks in the rural Philippines. But we’ll get some awesome material and photos for posting on http://docviper.livejournal.com/ . I’ll put up one more German episode before I leave. Assuming I can find occasional wi fi, I’ll post ongoing natural history stuff from the Philippines.
When I get back, I’m gonna watch The Guitar again. And maybe Forever Strong, just to balance the cancer with some rugby. I assume they play cricket and field hockey in the Philippines, but I’m not sure. I’ll let you know. And if I find a magical cancer cure in the form of some obscure flower nectar found only in one small highly endangered stream watershed in northern Mindanao, I’ll be sure to write down very carefully the details. No sense ending up like Sean Connery in Medicine Man.
The day before I left for Europe (see travelogue over at http://docviper.livejournal.com/), I got my feeding tube removed! For months now, I’ve been getting all of my daily calories by mouth—only using the tube to take my evening meds, and then only because I am (as Dr. H put it so insightfully) lazy. So when I went in for my oncology checkup last week, we removed it.
To do so, Dr. H spread some anesthetic around the tube entrance, told me it wouldn’t help but it made him feel better, put on a pair of gloves, and yanked the tube out. Hurt like hell. Turns out the inside is a bulb about an inch across. Which had to come out through the quarter-inch tube entrance hole. When he pulls the tube, the bulb inverts and pops out through the whole. It was covered with my chocolate milk/instant breakfast shake goop. It hurt like hell.
I actually assumed, since I’d be flying the next day, that Dr. H would not want to pull the tube. I had this vision of getting into a low pressure environment, and finding chocolate shake streaming out of the hole in my gut. Dr. H said the whole would seal within 24 hours and flying wasn’t an issue.
He was correct. The spot hurt for a couple days, but stopped leaking a few hours after he yanked it.
Then I flew to Europe. Where I do not have access to Instant Breakfast and chocolate milk (hell, finding ANY dairy products, except yoghurt, is difficult here). And since I was getting something like 95% of my calories via liquid chocolate milk goop, I figure this will be a challenge. I saw Bethany, my speech and oral function therapist, she says I’ll be eating diverse foods in no time. I got extra credit on my exam because I am able to eat chicken. Apparently that’s a particular challenge.
But I can’t eat very much of it. Here in Deutschland, I’ve been living on asparagus cream soup. This is white asparagus time of year in Germany. Spargelzuppe is everywhere. It varies. Some of it is thick, made with roux and white wine. A spritz of paprika. I had another one that was thickened only with pureed asparagus but had half a dozen crayfish tails swimming in it. And I had one that had a splodge of green asparagus puree on top.
I don’t know if my weight is holding up here. We walked many, many kilometers yesterday, but I did eat two-and-a-half bowls of Spargelzuppe (spilled most of that “half” bowl into my lap, had to wash my entire set of clothing in the shower last night after the soccer game). But I’m feeling pretty good. Hopefully the exercise will move me back toward fitness.
And maybe tomorrow I’ll find some instant breakfast. It’s a real pain in the ass to be in Germany and not drinking beer.
Thanks, everybody. Be sure to check out travelogue over at http://docviper.livejournal.com/, and professional blog at http://aehsfoundation.org/ . More postings from Germany coming every couple days at the former.
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!
