Huge progress this week. I went back on my basic dietary supplements—a vitamin tablet and an aspirin a day. In fact, it was my increasing ability to swallow effectively that got me thinking about this, but when Dr. N pointed out that my throat was still swollen and inflamed, I figured, hell, that’s what aspirin is all about. So I’m back on ‘em, after a year and a half off. And maybe it’s just psychosomatic, but I swear I feel more energetic and less painfully-throated. Hell, if I could get my voice back and get into some semblance of decent physical condition, I’d be what you’d have to call “recovered”.
Somewhat spookily, my voice seems to be getting better. There are times during the day when I realize I sound like my pre-cancer self. Somehow the big chunk of missing tissue on the lower left has been compensated, and just once in a while, I articulate a sentence just like I used to. When this happens, I get all hopeful, because speaking clearly and effectively was, as we’ve discussed repeatedly over the past year, one of my only actual skills. Of course, these moments of clear enunciation are spotty, and they come between long bouts of tiring and slurry speech. But they sound damned good to me. At least it’s a target to shoot at.
Which is also how I’ve started to try to get some physical condition back. Without kids to swim, our pool membership lapsed, so I’m not doing laps this summer. Have started working regularly at 50 meters with the crossbow, though. At 35 bolts a session, that’s 35 dead lifts of 200 pounds *, I believe, 0.5 for the folded draw rope so 100 pounds per. Plus hauling the 40 pound target a couple hundred meters up and down range, hiking back and forth to retrieve arrows, etc. It’s a workout. If I start to alternate that with some increasing lunchtime jogging, I may get there yet. Although I do sort of miss the swimming. I’ll have to look into that as well.
Finally, my throat continues to accumulate gunk—clearly my epiglottis remains missing in action. Still, my swallowing is improving. When I was in the Philippines, I could manage to get a breakfast pancake soaked in syrup down, but it took a struggle and a lot of liquid. Tonight I ate one almost straight away, and it only used half a mug of instant breakfast/Nestle’s Quick to get it done. My weight’s back up to 210 pounds—now I gotta start watching that it doesn’t go too high!
That’s a problem I’m much more familiar with than having it fall too low. Let’s recap here at the start of the summer—I’m feeling better, I can travel without hurting myself, my weight’s up, I’m exercising, I’m not in pain, and the only “serious” problem at the moment appears to be the ongoing lymphedema in my mandible and throat.
I can live with this situation. In fact, I can be damned grateful for it! Thanks for being here, everyone. New stuff going up over at http://docviper.livejournal.com/, should be some new professional blogging this week at http://aehsfoundation.org/ this week as well. Thanks again!
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!
