When my kids were younger, I used to tell them that my generation would be the last to die of cancer. I presumed we were close enough to cracking cell-specific mechanisms for cancers to be preventable, or at least easily treatable, diseases.
I missed it by a generation, maybe two. Still, the cutting edge of cancer research is in places where phenomenal treatment technologies are just a few meters further down the path. We are situated squarely between the brutal past and the subtle future of cancer therapy.
Consider. The 2011 Nobel Prize in Medicine went to researchers unlocking molecular gates to the immune system. In particular, Jules Hoffman and Bruce Beutler discovered the molecules that allow the innate immune system (the initial response to infection, and the one most closely associated with inflammation) to recognize microbes and trigger response. In fruit flies, these are called Toll Receptors, the equivalent in mammals are Toll-Like Receptors. TLRs (and, I suppose, TRs, although I didn’t research them as rigorously) bind specific lipopolysaccharides (LPS) that characterize various pathogenic microbes. The combination of TLR and LPS induces innate immune response, including inflammation. Structural mutations of TLRs are associated with either increased risk of infectious pathology (because the immune system doesn’t work as well) or inflammation diseases (because the mechanisms don’t turn off).
These were late 90s discoveries. Within the past few years, TLRs have been exploited in cancer research. Tumors suppress the inflammatory response. Researchers have found molecules that block the suppression by keeping TLRs functional, resulting in intense antitumor activity of the immune system. Indeed, a number of the susceptible mice in the studies completely rejected their tumors and were resistant to additional tumor formation.
This kind of thing is among the many lines of subcellular research likely to yield a host of new and efficient cancer treatments in the next couple of decades. Contrast that with where we are in the real world.
Earlier this month (January, that is) Medical News Today reported a study that concluded that “a subgroup of advanced head and neck cancer patients treated with radiation therapy plus the chemotherapy drug cisplatin had more positive outcomes than patients treated with radiation alone, and continued to show positive results ten years post-treatment.” That’s the treatment I got. It is state-of-the-art for the time, including a linear accelerator to generate the particle beams and three-dimensional modeling to site the beam impacts. Much of the technology thrown at radiation therapy is intended to truncate side effects in non-malignant nearby tissues. The same is true of the mix of substances given with the cisplatin in the chemotherapy brew.
Man. Assuming the side-effect-minimization methods worked in my case, I sure as hell am glad they were there. Because after my treatment ended, as you know from my rather insistent whining, the side effects nearly killed me, and for a couple of nights at least left me kind of wishing they would.
And this week? A great week here in cancer-recovery-land. I worked 5 long (ish—it’s still hard to function on less than 10 hours of sleep, and mornings are particularly difficult) days, got a lot done, had a lot of energy. Speech and swallowing are both improving, the latter rather more slowly. But I’m down to just a small cap of thick mucous depositing itself on my dysfunctional epiglottis a few times a day, where until now I had a whole face full of thick, ropey mucous. I’m hoping—and sort of assuming—that when I can swallow that mucous cap away, my swallowing will be back, at least for some foods. The pain under my tongue isn’t gone, but it’s less. And I saw Dr. H, and he can’t see anything that could be causing the pain. He says if it persists we’ll do another PET scan (the one that images radiolabeled sugar uptake in metabolically active cells, i.e. tumors). But he’s skeptical. A malignancy that can cause pain should show some sort of lesion that a practiced eye (and I certainly trust Dr. H’s eye, along with therapists Bethany and Jessica and Dr. T) can see, and the back of my tongue is “as smooth as a baby’s butt” as one of the medical staff put it in a weak moment. This week I go to see the radiation oncologist who replaced mine when she retired. That’ll give me one more check.
If things keep up like this, I may be back to full energy, and able to start posting bug and bunny photos for you this spring, along with additional weblogs. We’ll see. In any case, I’m traveling rather more regularly, so anxious to lose the feeding tube. When they take it out, I’m gonna frame it in a shadow box and hang it on the wall. Along with the rock and roll album covers. Rock on, all!!!
Had to travel to Atlanta for an overnighter. FedX’d 5 cans of food and a couple of bottles of Instant Breakfast to the hotel. That got me through two days of meetings. At Hartsfield coming back, I got a full body scan at security. They got 9 hits on my torso. So they pulled me out to pat me down. I told the guy I had a feeding tube and a blood port and started to show him the tube. He said “No, no, don’t take it out. Is it gonna hurt you when I pat you down? Don’t let me hurt you.” I assured him I would survive the pat-down. But the poor guy was so shook up by then that he did a crappy job patting me down. I could have had a set of vice grips and a ball peen hammer in my pockets and he wouldn’t have found them.
I got back Wednesday evening. Thursday I went to the hospital for rehab. Therapists Bethany and Jessica worked with me on improving my speech (although I got through two days of meetings relatively coherently) and strength. Then we went to check out how my throat infrastructure is doing in relation to the swallowing process.
Jessica numbed my nostrils with lidocaine, and slipped a scope in through my sinuses. Meanwhile, Bethany died a bunch of foods and drinks green so they’d contrast in color images. Then we went to work watching me swallow.
Let me orient you to the above photo. If you are standing on the screen surface looking in, that cave heading back straight away from you is my airway. The structure deep in the back there is the top part of my vocal cords. At your feet, in this view, falling away down from your toes, is my esophagus. The swollen blobby pink thing running across the bottom of the photo is what’s left of my epiglottis. The radiation turned it into a dysfunctional, clumsy mass.
As you can see in this photo. The greenish goop is some dyed applesauce. In a normally-functioning throat, the epiglottis would rise into place to block the airway so the food would be swallowed down the esophagus. Here, the airway is open, and a big blob of applesauce is dripping its way ominously toward my bronchi.
Which you can also see in this photo. This time it’s a thin liquid I’ve ingested—green-dyed water, I think. Most of it is bubbling down behind my tongue into my esophagus. But the airway is still open back there. My epiglottis is not inverting to do its job.
But, the human body is pretty smart. This photo shows what my throat is doing to substitute for the dysfunctional epiglottis. That ring in the back there is part of my vocal cord structure and upper airway contracting to shrink the entrance and so help to keep goop from entering my trachea, and instead have it pour down my esophagus right in front of you there behind my tongue. This substitute system, combined with my still partially paralyzed tongue, remains unable to deal with solids, or anything more challenging than thickish liquids (which I can pretty much pour right down my open esophagus, since I don’t have to swallow to move my epiglottis out of the way). But, with constant work on tongue rehab and swallowing exercises, I should get to where I can meet my daily calorie ration without pouring stuff through the tube directly into my gut.
From stuff I’ve read, it can take up to 3 years for this full substitution effect to operate effectively. I don’t have that kind of time. Now that I’m back at work, traveling is a necessity. And in May, I’m going to Germany. I want to be off the tube by then. I don’t want to be wandering around central Berlin looking for a Wal-Mart where I can buy liquid medical food. I may not be able to handle currywurst (long skinny curried sausages served on the street in hotdog buns). But I’ll be damned if I won’t be able to survive on soup, syrup, and ice cream. Germany, here we come!
Charles Mingus studied classical music and composition for years, and then went out and became one of the best and most original jazz bassists ever. He wrote groundbreaking music as well, played piano, led bands playing live around the world for decades. Then he was stricken with amylotropic lateral sclerosis, a paralytic disease of nervous system. First thing he could feel go were his fingers. Not long after, too young at 57, Mingus died of ALS.
I bring this up because numerous friends have pointed out the cruel sense of humor of the gods who would give me, devoted as I am to food, drink, music and public speaking, cancer of the tongue and throat. I will acknowledge that my gods, such as they are and when I take notice of them, seem to have perverse and ironic senses of humor. However, as a dilettante and marginally-to-un-talented cook, singer, and wine steward, I’d say I’m too small-time to be the target of any god’s cruel irony. Now Mingus. THERE was some irony.
As there was, for example, in Levon Helm getting throat cancer in the 90s. Having survived The Band, while carving out a niche as a singer-songwriter, Helm was diagnosed and passed on a laryngectomy in favor of a grueling (and with that I can truly sympathize) course of radiation and chemotherapy. By the 2000s, Helm was back singing and now he says his voice is 80% back. Maybe there’s hope for me yet.
Helm not ironic enough for you? How about Def Leppard drummer Rick Allen, losing his left arm in a car accident? Doctors reattached it, but the subsequent infection forced them to remove it permanently. Allen made it through the depression of waking up as a drummer without an arm, did some engineering and electronics, and was back in business.
Then there’s Pat Martino, genius jazz guitarist of Philadelphia. Had severe mental problems starting in the late 60s, with episodes so intense he underwent electroshock therapy to keep him in circulation. In the 1980s, his brain tumor was finally diagnosed and removed. The operation left Martino with amnesia in general and specifically without memory of how to play guitar. Took him seven years of re-learning to get back his facility.
Finally, Django Reinhardt. Practically invented modern jazz guitar in Paris clubs. Growing up in a French clan of Roma (Gypsies), one night the caravan he and his family lived in caught fire. Reinhardt and his neighbors rescued his wife and young son, and he ended up with two fingers on his left (chord) hand burned into permanent misshapen paralysis. While he was in the hospital, his brother brought him a new guitar. He taught himself to play fast (incredibly fast) jazz with just his two working fingers, using the damaged ones for chords.
Once again, my friends, the lesson for us is clear. The universe does not maliciously step into your life and smack you around for fun and games. The universe simply is. And bad shit happens all the time. And sometimes, ironically funny shit happens. You have to enjoy those wry moments, even the most tragic.
And me? I’m not bad. Have been trying to eat. My cousin suggested an entry or so ago that I make myself a big pot of pasta fagiole and let that slide down my throat. Which I am going to do tomorrow, in honor of my birthday. Meanwhile, the rest of the family ordered Italian takeout for dinner last night, so I threw in for a bowl of pasta fagiole. It was delicious and spicy. Two spoonfuls in, I got a bean stuck on the remnants of my epiglottis and wavered between choking to death and making myself crazy for like an hour before I could get rid of it. Tomorrow I’m thinking I’ll blend a portion of the fagiole into a smooth paste before I tackle it.
Lots of travel coming up. Look for slapstick humor here, as I’m still not free of the liquid medical food and have to FedX it to hotels nationwide. Also, a heads-up Happy Birthday to Dr. Dan. Bet you never thought we’d make it to this point of life, did you Bubba? I can sure as hell tell you that just about a year ago next couple of months, I was very sure I wouldn’t make it here.
Take that, universe. There’s your smeggin’ irony!
At the Greater Baltimore Medical Center you don’t get a cancer doctor. You get a designated SWAT squad. Among MDs, I have a surgeon, a radiologist (since retired), an oncologist, and a dentist. At the next level, I have a PhD dietician and a Master’s level physical therapist.
I went to see Dr. T, oncologist (and haematologist, but I haven’t needed that specialty), this week. On my way in to the examining room, I passed Dr. D in his office. Dr. D was on duty in the emergency room that Sunday morning I showed up dehydrated and anemic. He remembered me. That’s a skilled physician!
Dr. T is generally happy with my condition. My weight is stable on a diet of one enormous Carnation Instant Breakfast shake and three cans of liquid medical food a day. My teeth are good—dental hygiene is a huge concern in throat and tongue cancer because salivary glands are destroyed and damaged by radiation. Visible infections in my oral cavity are all gone.
But that pain at the lower left side of my tongue—approximately where the tumor was—came back as soon as I closed out the Fluconazole—that’s the vaginal yeast infection stuff—prescription. Dr. T looked close, and went back to check the post-treatment imaging. There was absolutely no potential tumorous activity at that spot then, and there is no tumor material there now. No thrush, either. But, since the Fluconazole fixed the pain and now the pain’s back, she put me back on Fluconazole. We’ll have to see how it goes this time.
Speaking of salivary glands…we were speaking of those somewhere up there, weren’t we? Oh, there it is. Ok, speaking of salivary glands. Mine seem to have sorted themselves out within the past week or so. The thick ropey mucous forms in the throat from one kind of gland, a type that survives the radiation. The reason you mostly don’t have a problem with it is that it mixes with the thin mucous from the glands higher in the throat (and mouth) and the net texture is normal saliva. The past few days, some of my thin salivary glands seem to have started functioning. This is much more comfortable. And easier to work with. As in “at work”. A bunch of us share a very small space in our Eastport marina location, and there’s only one bathroom. It’s not really possible to politely clear a mucousy throat under such conditions.
I took my first stab at a jog today. It’s warm enough outside so I didn’t feel like I was going hypothermic immediately. I managed about 300 meters jogging, and a few more walking. My body felt like…well, like it had spent the past year in bed. Which it pretty much has! But the exercise felt good. Hopefully I’ll be back to 5K a day soon. I’ll have to watch my weight, though. I’ve been stable at 194 (down from a peak of 276, I’ll have you know). I may need to increase my calorie intake. And, since I need to start getting substantive calories by mouth (beyond my thick shake), the timing is perfect. Scrambled eggs, here we come!
Thanks for stopping by, everyone. I hope everybody’s noticed that day length is increasing palpably (can day length be “palpable”?). Spring is just weeks away. The beach house is rented for July. I can not WAIT to park my not-so-rotund-as-before butt in the sand and watch the manta rays leap out of the surf! Special thanks this week to Ginger, Gail, and Sam S. for the nice notes. Happy New Year, everybody. With a little bit of luck (and/or Xanax) it’ll be a good one!
Let’s take stock of what we, as a society, learned this year. The Higgs Boson still doesn’t exist, although deflections in the readouts make their nonexistence highly improbable. The oldest “animals” in Chinese fossils nearly 600 million years old turn out to be some kind of fungus (admittedly, it’s OLD fungus). Antioxidants don’t prevent prostate cancer. College graduates get better cancer treatment than those less well educated. And rats not only learn to liberate other trapped rats, they give them gratuitous chocolate treats.
Personally? What a year. The stuff “used to treat vaginal yeast infections” worked. The chronic pain on the deep left of my tongue is almost gone. I’m not generating nearly the volume of disgusting ropey throat mucous in the evening. My tongue rehab is making my voice at least marginally more understandable. And I can drink a 500 calorie breakfast product shake (made with whole milk, of course) in lieu of two of my cans of international emergency rations.
So, physically, I suppose I’m climbing out of the hole. Although I’m still unable to swallow anything more challenging than cream-thick liquid. I’m also still pretty nervous about the future. Which is a good segue for this New Year’s edition. We need some predictions about next year!
Prediction 1: aliens will not contact earth. Earth will not contact aliens. Despite Discovery Channel’s best efforts, Bigfoot will not actually be encountered. See http: //www.bfro.net/
Prediction 2: none of the present Republican candidates for President will be elected. Can you frickin’ imagine? See http://nymag.com/daily/intel/2011/06/god_caught_backing_multiple_go.html
Prediction 3: anomalous weather will not be blamed on sunspots. The sun is in a period of low activity, and those annoying spots are nearly gone. Don’t worry. They’ll be back. We’re climbing out of the sunspot cycle minimum, see http://solarscience.msfc.nasa.gov/SunspotCycle.shtml
Prediction 4: the price of high-quality flash-frozen Bluefin tuna will continue to rise on the Tsukiji wholesale market, making those Australian tuna cowboys (see http://scubachronicles.wordpress.com/2008/06/20/tuna-cowboys-playing-with-14ft-makos/ ) wealthy beyond reason.
Prediction 5: the world will not end on 21 December 2012, despite the close-out of the Mayan Long Count Calender (ending the 144,000 day cycle and wrapping up the entire Mayan 5,200 year creation story). For sensible debunking from NASA, see http://www.space.com/14078-apocalypse-2012-doomsday-predictions-debunked-nasa.html . For a rather more fun comprehensive compilation of web-based sources of hysteria, see http://www.december212012.com/ .
So there you have it. Fun as it would be to check in to The Restaurant at the End of the Universe next December, we’re all gonna wake up on 22 December one day older and just those few hours wiser. I’m working on staying optimistic for the coming year, despite my trepidation. I’m running low on Xanax, though, so we’ll have to see how that goes. One thing I do know—you all are motivation for working hard toward recovery. Special shouts this week to Linda for the great photo from “the good old days”, the update from Margaret and her family, and the note from Mary. Thanks all—talk to you next week!
Last February, I presented myself at my GP’s office with the swollen throat and tongue and impaired speech. He took one look and ran—actually ran—upstairs to the nearest throat specialist willing to look at me. Which the guy did. That guy subsequently panicked and called Greater Baltimore Medical Center and the Johns Hopkins Throat Cancer specialists to try to get me in that night. On my way out of his office, the throat guy said “just in case you want some hope that it’s an infection and not a malignancy, here’s a prescription”. I filled the prescription, started the course the next morning. A few hours later it was confirmed that it was cancer and I dropped the med. The stuff he gave me was an antibiotic called Fluconazole. I was reminded of this when my oncologist diagnosed my painful tongue as due to childhood favorite “thrush”. Which, it turns out, is a fungal—actually yeast—infection. Thus the new scrip my oncologist wrote this week for a higher dose tablet says “This medicine is used to treat vaginal yeast infections”. That’s pretty much it.
But it seems to be working. After two doses, my pain is less and the ropey throat mucous isn’t as bad. Dr. H is just smegging awesome!
Last night I had a dream that I ate a whole pizza. After I was done, I wondered how I managed it by mouth instead of feeding tube. Then I woke up to the reality that it was an Instant Breakfast shake and more UN emergency rations by tube. Sigh.
Also last night, I finished the Gospel of Luke. Now I’m into the Gospel of John. It’s a long one, and takes some slugging to get through. Ah, but there’s the big reward waiting—my annual foray into the Revelation of John. Psychedelia like the Grateful Dead could only wish for.
Tomorrow night (I’m writing this on Friday evening), after the crowd leaves from the crab balls, shrimp, ravioli and ham dinner, I hope to have everything wrapped and under the tree so I can settle in to watch the Midnight Mass from the Vatican. It’s fabulous. They have a creepy little porcelain Jesus that is apparently by some famous post-medieval porcelain house. It’s frightening.
Finally, I hope all of you have a wonderful, wonderful holiday with whatever family and friends you’ve got around. I know I’m just glad to be here for this one, having come through disease and treatment, either of which could have, with a slight miscalculation on anyone’s part, especially me, have seen me not here to send my love to you this holiday. But I’m alive. And I’m damned grateful for it, and for all of you out there, giving me strength to fight through the darkness. Thanks all. I love you. Talk to you around New Year’s!
It Might Get Messy
Friday morning at the hospital, fine-tuning my rehabilitation with Therapist Bethany. Friday afternoon with Dr. K, my GP, gentlemen who saved my life by recognizing my Stage 4 tumors last February. After the exam, he said “May I ask a question? What was the worst part of the whole experience?”
I had to think about it. I thought hard about the emotional strain, the panic over my professional life, the night I was certain I was not going to survive.
The latter was the key. I had gone through the whole seven weeks of two-a-day radiation and weekly chemotherapy treatment, and while it grew increasingly painful on my throat and jaws, it didn’t disable me. I was chirpy and optimistic on the last day of treatment, a Friday when I got the last two doses of radiation. It was that Saturday night that the shit hit the fan. That was the night I dehydrated in nonstop vomiting and had to be shuttled to the ER next morning, where I was admitted, packed into a room, hooked up to an IV and an automatic vacuum throat drain, and given two units of blood for anemia. It was the physical exhaustion and pain of those first few nights after treatment ended that were by far the worst of the worst. As a scientist and at least amateur practitioner of Zen acceptance, I knew going in that cancer is like auto accidents, lightning strikes, and jet engines falling from the sky onto beds. It can happen to anyone. There’s no sense being personally affronted by it when it shows up. You’re gonna spend enough of your physical and emotional strength fighting the battle for recovery. Don’t want to dilute that focus by worrying about what you’ve done to insult the gods.
Dr. K is only a few years younger than I am (his daughter played double-reed instruments in her youth, as did Molly). He said he’s had cancer patients who didn’t have the strength to fight their way through the physiological wasteland of radiation and chemotherapy.
While it did cross my mind that Saturday night that I might not survive the experience, that just kind of pissed me off. Weak as I was then, and horrified as I was at having to go to the emergency room (4th time in my life, once as a kid for a cut on the head, twice for my stone-packed gall bladder), it made me mad that I’d been forced to it and steeled myself for getting through it. I was, in short, enraged (along with being pretty much prostrate).
So there you have it. Turns out I lied to Dr. K, and misled you a few paragraphs up. I DID end up emotionally vested in the process, angry, frustrated and out for vengeance. Which latter, with some hard work on this physical therapy, may come to pass. I may yet beat this and come out scarred but whole.
Speech therapist Bethany ran a scope through my sinuses to check out my throat yesterday. Turns out my epiglottis actually still exists. It’s twisted, misshapen, and dysfunctional. But it’s there. Hopefully I’ll have a picture for you next week.
I hope everyone is having a good runup to the holidays. I sure as hell am thankful this Christmas. Just glad to be here!
