Jazz innovator Thelonious Monk was, as his biographer put it, “an American original” [1]. He was also, unfortunately, desperately ill with bipolar disorder, which, according to his son [2], became obvious to his long-suffering wife quite early in his adulthood. But when his life became impaired by his illness, in the 1970s, his wife (who handled his business matters, personal grooming and dress, acted as travel assistant, dietician, and interpreter for media interviews) turned to “juicing”. She purchased two industrial-strength juicing machines, and, given the necessary lifestyle of working musicians in New York, ran them constantly, including between midnight and dawn. Much to the annoyance of neighbors in their apartment building. Between the noise and the huge volumes of vegetable pulp, they were actually forced out of one building.
The thing about Monk was, he completely innovated jazz piano (and ensemble) music starting in the 1950s. He developed a method of playing dissonant notes that startled but were so logical they sounded consonant. As I read somewhere (can’t recall just now), “he singlehandedly changed the minor second (interval of one-half a full note) from mistake to resource”. You can hear all this on his recordings. But by the 1960s, others (Cecil Taylor, Bud Powell, Coltrane, Miles Davis) had taken the music to new places. My theory is that as Monk’s innovations became mainstream, he got bored, and the work that allowed him to suppress his symptoms no longer sufficed.
But the juicing, as you might expect, didn’t help. Neither did the musician’s ominous and ubiquitous use of alcohol, tobacco, marijuana, and injectable narcotics. Lithium did, but it slowed him down and dulled his creativity. His doctors even tried electroshock therapy [3], to no beneficial effect. Despite a diet rich in juiced carrots and other vegetables, his schizophrenia killed him—he became catatonic and simply died.
To a much less dramatic degree, I know how Monk felt when Nellie insisted he take his juices and that they would help his health. I’ve been on powerful antibiotics for months now, to treat a persistent throat infection. We started with Ciprofloxacin, which kills pretty much everything in the human body that is not human, and takes a bit of your liver with it for good measure. Moved on to Augmentin, a combination of high-powered biocide with acidifiers to reduce the pH of bodily fluids. This worked for a while. But the infection is back, big time. I produce copious quantities of mucous from my throat and sinuses, and recently it’s taken to smelling like a dead bluefish behind the seat of a pickup truck parked in the hot summer sun of southern Virginia (but that’s another story).
Anyway. After I awoke from surgery last spring, I never thought I would come to grips with life lacking a tongue. My voice was far too important to me. Along with, of course, my devotion to food and wine. But I’ve managed to accept the trade-off of being alive vs. being able to speak, eat and drink. My mental state is good. I’m optimistic (at least leading up to September’s PET scan, when we’ll find out if I’m actually cancer-free). I’m as happy as someone whose life is limited to reading, writing, watching TV, practicing guitar, and occasionally taking walks or trips to the archery range can be. But man, I really stink. And I can’t imagine why I should have a persistent infection in my throat. I don’t eat anything by mouth except the occasional spoonful of ice cream. That hardly seems like a basis for powerful bacterial infection.
But, like so much of the outcome and treatment of cancer, it’s just something else to endure and eventually, I suppose, accept. As is the danger of eating a sliver of ice cream now and then.
I was at the hospital yesterday for a “swallowing study”. The technician has me eat a small scoop of ice cream and try to swallow. Then she peers into my maw with a flashlight. She could see the little food bolus perched right on my dysfunctional epiglottis. As it melts and slips downward, some of it slides into my airway and some runs down my throat. The bit that reaches my airway is dangerous. Apparently, pneumonia is a constant threat for people in my condition. I don’t choke or cough when I eat (or sip water when I brush my teeth or coke once in a while). Which I suspect is not a good thing. It means my airway is accepting the foreign matter, and has to deal with it.
Hopefully, it CAN deal with it. Reverse “peristalsis”, with the cilia lining my bronchi returning stuff to my oral cavity needs to be strong. I certainly don’t need pneumonia on top of the other health threats my battered body faces. But I do like my spoonful of ice cream every few days.
If I DO contract pneumonia, rest assured you’ll be the first to hear of it. No other weblog activity this week, this is the only piece going up (except, hopefully, I’ll get a new blog up at www. aehsfoundation.org, go to the lower left on the home page and click through to the nominally weekly column). And don’t miss Dr. Crossley’s weekly musings at http://www.daccrossley.typepad.com . I believe DAC has a new novel coming out later this year, look for that as well. My love to you all, and my thanks for being here for me!
Notes
[1] Kelley, Robin D.G., 2009. Thelonious Monk: The Life and Times of An American Original. The author apparently spent 14 years writing this, and it shows. He pretty much tracks Monk’s every move from the 1950s to his death in February 1982. Despite the exhaustive detail, the book is easy to read—Kelley’s language moves like Monk’s left hand on a good piano. Highly recommended—No Household Should Be Without. While you’re at it, go to your Amazon account and download all his Columbia Records recordings, and be prepared to dig deeper, back to his days with Riverside. “Genius” is an overused word in popular music, but Monk was, thanks to his incredible work ethic (like Coltrane, he practiced whenever and wherever he could find an instrument) and imagination, a bona fide genius.
[2] While you’re on Amazon buying the Monk biography, you might as well order a copy of excellent documentary film “Straight No Chaser”, a Warner Brothers film directed by Charlotte Zwerin. The opportunity to watch Monk play piano is not to be missed, and the interviews with his manager and son are priceless.
[3] Your reflex revulsion at the thought of electroshock therapy may be at least somewhat misplaced. My Mom’s mother had, by Mom’s recollection, at least 13 electroshock treatments in her later life. Mom said they worked to the extent that her mother could function for 6 or 7 months after each treatment, and that without them, she would have been completely intractable and institutionalized.
The evolution of blood clotting is a complex process that has long been the subject of detailed elucidation by science. Recently, this topic has achieved some internet notoriety. This is mainly a result of the “intelligent design” “community” pushing blood clotting as de facto evidence for i.d. because “it’s too complicated to have evolved by small steps”. Without wasting time, the i.d. people are simply bullshitting. There is a large and clear literature documenting the evolution of blood clotting from invertebrates to lower vertebrates to mammals.
Which is not to say that the clotting literature is easy to understand. It is replete (good word, “replete”, no?) with the arcane nomenclature of protein coding from specific genes on specific chromosomes. I can simplify this for you. Pre-vertebrate invertebrates (animals with a nerve cord analogous to a spinal cord but no cartilage or bones, such as sea squirts) have the appropriate protein production mechanisms without having effective clotting processes. Lower vertebrates (such as the lamprey eel, a primitive fish with a cartilage skeleton) have some components of the clotting process—their proteins have evolved onto the path of clotting. Higher vertebrates—mammals—have the full blown blood clotting mechanisms we know and love every time we slip with a kitchen knife or pair of scissors. Our blood, on exposure to air, thickens and forms a tough layer of protein over the severed vessels, and this layer increases in effectiveness over the first few hours after injury.
And why am I subjecting you to this quirky discussion? Because I saw my doctors this week. Still no cancer visible via camerascope. But, they remain concerned for the large blood clot seen in my lungs in my last CT scan. In response, Cathy gives me twice-a-day injections of anti-clotting drugs, right in the stomach. Word is that it can take many months for a clot like that to vaporize. The risks, of course, depend on whether the clot moves before it’s eliminated. If it shifts to the blood vessels of the brain, it triggers a massive stroke. If it reaches the approaches to the heart, cardiac arrest follows. It’s a dangerous, dangerous thing. When we do the PET scan to look for residual cancer in September, they’ll also do a CT scan with a contrast fluid that will let them look for the clot. If it’s gone, I can forego the tummy injections. That would be nice!
But you know, after the past 3+ years of bodily insult, I take even shit like this with complete calm. I’ve been close enough to death to have seen the dark in the abyss, and the sad fact is we’re all going to wade into it sooner or later. Probably sooner in my case, given my medical history. But not in the immediate future. In fact, though my throat still gets all goopy in the afternoon, and I’m physically weak, I’m definitely recovering. Got the little tiny barbells by my recliner, so I can toss them occasionally during the day to start to build muscle mass. With the gorgeous weather, I’m working on getting out to do some photography walks. In fact, the best results from several trips are appended to the bottom of this entry.
My doctors approved of my attempts to eat ice cream by mouth. In fact, my oncology hematologist wants the “speech therapy” people to evaluate me for eating more food by mouth. I must admit I’m a little befuddled by this. I assume she thinks they can teach me to shove food into my throat, maybe on a stiff wire like force-feeding a dead mouse to a recalcitrant snake. Absent a tongue, I can’t manipulate a food bolus. The only hope I have for getting food down my throat is to tip my head back to make a linear canal between my oral cavity and the rest of my gastrointestinal tract. And hope that on the way down, nothing hangs up on the surgical seams between my GIT and my airway.
But it doesn’t seem to. So I’m improving. Autumn is just around the corner, my time of year. Thanksgiving is coming, and I’m looking forward to having a house full of friends and cooking the hell out of a boatload of food. Life, even without a tongue, is good. I hope the same goes for all of you. Keep in touch, everyone. You’ve gotten me this far, and it sure as hell looks like I’m gonna survive my most recent physical travails, to be verified (hopefully) by PET + CT scans in September. Love you all! PS—for the moment, this is the only piece going up on this weblog empire. Don’t forget to check out Dr. Crossley’s blog at http://www.daccrossley.typepad.com/ .
Here’s my problem. I’m not much of a guitar player. I can do basic open and barre chords, of course, and minor 7ths, and a few useful scales (major, pentatonic, blues, the usual). And I can noodle a solo or two, usually ripping off something I heard Leslie West play on the radio in the winter of 1972. I’ve even written 3 or 4 instrumentals, one full length, a couple of miniatures, and some uneven-but-interesting pattern runs. But my playing is actually pretty sucky.
I CAN write a decent song. I’ve got 8 or 10 originals with interesting lyrics that cover my lack of instrumental skill. And while my “singing” is on par with my guitar-playing “skill”, I enjoyed writing and recording songs for several years. Just for fun, and just because I enjoy the word-play of song writing.
Now I don’t have a tongue. No more writing, “singing”, and recording. I’m down to instrumentals, which are not my strength. I have to stretch. I’m learning some new scales, and some new chords, and working on putting together credible guitar music without lyrics. Just another frustration on the long road from cancer to functional human being.
I’m brought back to that thought from a few entries back. That the gods, realizing how important my voice has been to me, got together and decided that was precisely what I needed to lose to make it clear that I don’t control my destiny. Of course, putting me on the path to death-by-cancer of any kind was sufficient to make that demonstration. Maybe the voice was just somebody feeling cranky that day.
All this, of course, assumes that I get out of the cancer alive. A threshold which is still at issue, pending that important September PET scan to look for residual or recurrent malignancies.
But I feel good. Not great—I still tend to bind up with mucous late in the afternoon, I have trouble eating enough to keep my weight up, and I’m too weak to do much more than sit and read or watch TV. I assume by a month from now I’ll be mostly over the drastic impacts from the radiation and chemotherapy. I dug out a couple of light weights from the basement, so I can start to try to rebuild some muscle mass. That’s the issue with my lack of weight gain. With my muscles atrophied from 3+ years of war with cancer, I’m incredibly weak. And have no metabolic foundations to move my weight north of 187 or so pounds (if I recall, the last time I weighed less than 190 was on my sophomore year high school football roster. It was 190 junior year, 200 senior year).
I have pretty much worked out how to best take my medicines to maximize my ability to function. I wake up, usually late—9 or 10 a.m., and proceed to pour 3 or 4 cartons of “food” into my gastrointestinal tract. I keep it parked in the recliner, often snoozing, also reading, writing, and noodling on guitar, until 4 p.m. or so. At that point I dissolve a Zofran (anti-nauseal) and a couple of dilaudids (painkillers that also help dry me out) in some water, and take them with some “Tussin” cough syrup (also a dry-out med). That makes me comfortable until 6 or 7 when I “eat” 3 more cartons of food. Soon after that I change venue to upstairs, where I watch movies and videos with more guitar noodling. I take nighttime meds around 9 or so, and am usually asleep by midnight. Although these days I’ve been keeping music videos running most of the night. I tend to sleep while they’re on, and wake up when it’s time to change them out. Odd, I know, but it’s working for me.
I did manage a breakthrough of sorts this week, in addition to sitting on my butt tossing little tiny barbells in the air. I ate some ice cream by mouth. And I didn’t immediately choke to death, as Dr. H feared when I told him I was gonna try it. Actually it was quite odd. Without a tongue to manipulate something in my mouth, I ended up having to tilt my head back to let the melted ice cream sort of flow into my throat. But flow it did, and it ran down the correct plumbing, never threatening my airway. So that was a worthwhile experiment. In fact it felt good to eat by mouth. I’m thoroughly sick of the milk-like liquid food I pour in through my gut tube. Being able to at least contemplate eating by mouth is helpful. Or maybe it’s “hopeful”, as in there’s hope I won’t be totally crippled for the rest of my days.
A couple of other interesting things this week. Dr. Crossley (of course, don’t miss his weblog at daccrossley.typepad.com/ ) sent me an email regarding a cousin who was given 6 months by his oncologists and is now cancer-free. Very encouraging for someone like me, given 20% odds of remission by the doctors who now don’t see residual malignancy, at least on initial observation. And my high school class got in touch, after 40+ years of being out of contact. It’s nice to be back in communication with people I haven’t seen since 1971 or 1972!
Anyway. No other blog progress this week—this one’s the only one going up. Thanks to all of you for being here. You make it worth the struggle, and I love you all. Thanksgiving is just around the corner, and I’m looking forward to cooking the hell out of a house full of food. I promise to work harder on guitar. Until next week, my friends!
So, many years ago, I had a business meeting in Hawaii (actually, it was after a grueling 2 week trip to Guam to work for the Air Force, but that’s another story). So I asked the staff in my Waikiki office (believe it or not, I had global, office-specific responsibilities at the time) what I should wear. They said “one of your Aloha shirts, of course”. I said I didn’t have any Aloha shirts. So they dragged me over to the mall and made me buy a state-of-the-art, inside-out-fabric, Aloha shirt (which I still have). Next morning I meet the guy for breakfast. He shows up in a mainland-style white business shirt, with creases from where he unfolded it after buying it at the same mall the night before.
That kind of misunderstanding pertains throughout life. For example, I met with my Oncology Surgeon a couple weeks ago. His main concern, properly, was residual or recurrent cancer. But I’ve also been suffering with a longstanding, ongoing, nasty throat infection. My doctor kind of made that a side issue, which we’re “treating” by having me regularly change out the internal plumbing on my tracheotomy.
But in fact, absent ongoing cancer (cross-reference last week’s entry to this weblog), the infection is a serious problem. I wake up in the morning, relatively dry and smelling reasonably like a human being. By evening, I’m weeping mucous from numerous portals-of-bodily-entry and I smell like a decaying cadaver. It’s just nasty.
So I emailed my surgeon. He sent a new scrip to the pharmacy, upgrading my antibiotic from “Cipro” to “Augmentin”. Yeah, I think that’s the same stuff they use for persistent ear infections in kids. Hopefully he’s giving me a massive dose. We’ll see.
I wrote the above on Thursday, day the scrip hit the pharmacy. Now it’s Saturday. I’ve been hammering Augmentin for 3 days. I’m feeling better…and worse. Better, because it seems to be taking care of the throat infection. Mucous production is way down, and I don’t smell like road kill anymore. Worse because it’s played hell with my gut flora. Now I have vomiting fits and loose bowels. Sigh. It’s just not easy.
However. For the first time in my life I had this experience. Instead of thinkin’ “holy shit, it’s August already!”, I’m thinkin’ “shit, it’s August and I’m still alive!” Now THAT’S the way to ride the calendar!
I’m afraid I’m still behind on the rest of the weblog empire. Best I could do was get a piece submitted for my professional blog at www.aehsfoundation.org . That’ll be up in a day or so. Thank you all for being here for me. As I gain strength, I realize more and more how much you’ve meant to my recovery. And I am incredibly grateful!
