Unsurprisingly, I lost weight in the Philippines. We worked long days, did some heavy walking, and my diet was limited. The night I got back I was under 200 lbs. for the first time in months. To rebuild my mass, I’ve been eating tuna and mayo on English muffins and drinking gallons of chocolate milk/instant breakfast. I’ve made it back up to 202.
I can still feel that worrisome sensitive spot on the right side of my tongue, symmetrical to the original tumor on the left. To give it a real workout, I tried a big slab of watermelon today. But it was insufficiently acid—not at all the same challenge as fresh-squeezed mango or orange juice. Still, I know it’s there.
Friday I saw Dr. N, my new radiation oncologist. The exam session was kind of stretched, they had an emergency case of some kind going in the back that needed his periodic attention. When he finally got me opened up and anesthetized, and the scope into my throat through my sinuses, the PA demanded he call “extension blahblahblah”. He simply mumbled “that ain’t happenin’” while he peered around inside.
He says my throat is still a mess of scars and swollen tissue. Keep in mind it’s now been just about a year since they stopped washing me with radiation and chemotherapeutic toxins. It was right around this time last year that I ended up in the emergency room begging for morphine and IV fluids. You’d think a frickin’ year later that scars and swelling would have abated, wouldn’t you?
Apparently not. Dr. N looked hard, but couldn’t find anything that looked like an incipient tumor, not to mention lesion of any sort, where I’ve been imagining this itchy spot. But he’s taking it seriously. We scheduled a follow up visit 8 weeks out. That ought to give anything inclined to grow time to manifest into the visible range. Or perhaps for me to stop imagining it. We’ll have to see how that goes.
Meanwhile, for Father’s Day we had Chinese take away, I ate a bowl of curried rice noodles and one of lo mein. Now I’m smegging stuffed. Still, I’m working on a large chocolate shake to get my evening meds down. I need to start getting in shape, that’s gonna use up calories. Thursday I stopped on the way home and shot 30 or 35 arrows, just hauling the crossbow-safe target down the range uses substantive energy.
With all that said, as I told Dr. N, I feel better than I have in a year-and-a-half. I’ve even—and this is really weird—had moments when my voice sounded absolutely normal, like before the tumor. I have never expected to get my speaking voice back. But this gives me real hope. Maybe I will make it out of this hole whole.
I’ll certainly keep you appraised. Meantime, there’s residual Philippines travelogue over at http://docviper.livejournal.com/, and new sustainability thoughts at http://aehsfoundation.org/ . Most of all, now that I’ve been overseas again for the first time since getting sick, I’m feeling more like a normal person. I learned a ton, maybe more than usual, knowing I might never have traveled like that again. Looking forward to the next road trip—maybe by then I’ll be able to eat something besides glass noodles!
National Cancer Institute estimates for 2012 are that 13,000 people in the US will contract tongue cancer, and around 2,000 of them will die. Five year survival rate for Stage 4 cancers (like mine) nationally are about 30% [1]. My doctors estimate 80% survival even for advanced-stage cancer with the aggressive treatment combination that the GBMC Head, Neck and Throat Cancer Center set up for me. They say that in particular the two-a-day radiation exposures are important, making it impossible for the malignant cells to recover between treatments enough to reproduce.
I do try not to worry. And to be kind to my throat. Knowing that inflammation is a big component of cancer inception, I try to keep things smooth. Only a sip of wine now and then, easy foods, cooling non-alcoholic beverages. Of course, in Germany a few weeks ago, that program got flushed when it became clear that I would have to eat such throat-challenging comestibles as smoked fish, wursts, sauerkraut, and beer if I was to maintain my weight. At the end of a full week of such insults, my throat was swollen and sore. Recovered quickly, though. By the time I left for the Philippines three days after returning from Berlin, my throat felt fine.
Per the prior entry, it took some dietary futzing to find foods I could get down my throat at all. The glass noodles do it, and for the past couple days I’ve made starchy noodles work (the lo mein at lunch was particularly good). But here’s the thing. Fresh fruit juice is a huge amenity of the tropics. Mango is ubiquitous here, and it comes in orange, yellow or green. Other fruit juices include a really sour kind of citrus (little key-lime looking things), freshly squeezed OJ, and on and on, to a list in good restaurants that run to a dozen juices and another dozen “shakes” with added sugar, water and ice.
When I slurp the acid juices (which are fabulously delicious, BTW), and let them run down the right side of my throat, I get a sharp pain in a particular spot. After drinking, my throat feels swollen in that spot. And I’m thinking “inflammation?” Or worse? A pre-tumor? Another full-blown tumor?
I dunno. I don’t want to sound paranoid. But I have appointments with both my surgeon and my radiation oncologist when I get back to the States. And I’m happy about that. I’d love the reassurance that there’s nothing problematic on the right side of my throat. But I’d love even more to catch something problematic early enough to obviate the two-a-day radiation exposures and once-a-week chemo infusion. A less devastating treatment regimen would make the fact of a cancer recurrence a lot more bearable.
I’m probably just being overly sensitive. But I’m keeping those appointments! I’ll let you know how they come out. Meantime, there’s Philippines travelogue over at http://docviper.livejournal.com/, and should be a new edition of my professional blog at http://aehsfoundation.org/ . Thanks for being here, everyone. Mabuhay and Salamat. Love to all!
Notes
[1] http://seer.cancer.gov/statfacts/html/tongue.html
It Might Get Messy
But sometimes, you learn to count your blessings. Having had my feeding tube yanked out and a pleasant and productive week in Germany, I made it home for the weekend. Then left on Monday for the Philippines.
It’s been a long time since I was in Asia. Long enough to forget what real poverty and bad hotels are all about. Now I remember.
But realizing that your life could be (a lot) worse doesn’t pump in the calories needed to maintain weight, much less survive. Whether my life looks good or bad in comparison to others I still gotta eat.
And that, of course, is an ongoing problem. In Germany I warmed up on asparagus soup and ice cream for a couple of days before I managed to start choking down pasta, sausages, sauerkraut, smoked fish, stuffed crepes, liver dumplings, and spatzle. After a week of such abuse, my throat was sore but I had lost only a few pounds. Despite long days and some hard hiking in Berlin.
What the hell, I wondered while my throat recovered over the weekend, am I going to eat in the Philippines? The flight over wasn’t encouraging—neither the Korean stir-fry with pickles and hot sauce nor the pasta with cheese and tomato sauce went down very well. Fortunately at the Inchon Airport, there were Haagen Daas ice cream bars and Sprite. In Manila that night, and Mindanao next day, it looked like panic time from the food perspective.
Not to worry. I found sotanghon noodles. They’re the skinny, transparent glass noodles often served in Chinese restaurants. They seem to be ubiquitous here, with dark sauce and seafood and/or pork and vegetables. And damned if they don’t slide right down my throat, past the shards of my esophagus, aided by slurps of bottled water. My throat feels good enough to allow me to sample the other stuff on the table, and I get the bulk of my calories from glass noodles. Last night, just to change it up, I had the poached eggs parmesan at the quirky local place next door to our bad hotel. That went down ok as well.
Above photo of life-saving sotanghon noodles. These babies slide down an esophagus-less throat like greased eels. As if I knew what greased eels would feel like on my throat. Wait, I DO know! I’ve eaten eel larvae and juveniles in olive oil and garlic in Spanish restaurants from Newark to…uh…Spain. So there!
So now that I can feed myself, I’m back to the usual problems. Need to exercise my mouth, tongue, neck and shoulders. Need to wear my lymphedema remediation mask for as many hours a day as possible. Need to get myself back in shape. Blahblahblahblahblah. Because I’m in a city of half a million people, most of whom have REAL problems.
If you want to make cancer recovery seem like watching TV on a weekend night, I recommend travel to impoverished parts of Asia. You’ll be a lot more positive about your life, whatever your issues are!
Thanks for being here, everybody. The first travelogue from the Philippines will go up this weekend on top of the German stuff over at http://docviper.livejournal.com/. Professional weblog still happening weekly at http://aehsfoundation.org . Love to all!
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!
