Saturday, September 28, 2013
It Might Get Messy
25,000 years ago, people developed new technologies for working stone into knives, spears, and arrow points. These are the beautifully fluted and sharp-edged pieces that you think of when you think “cave man”. In the Americas, these tools are called “Clovis points”, and their dates are controversial. In western U.S., Clovis points date to 15,000 years ago and are in keeping with the transit of people across Siberian land bridges into northwestern North America. Similarly worked tools date from earlier times in southern Europe and possibly in eastern North America. On the latter evidence, a small cadre of archaeologists propose human origins in the Americas via coastal boats along Atlantic ice sheets from Europe. This “Solutrean Hypothesis” is controversial. Mainstream archaeologists still favor the Asian land bridges as the source of people in the western hemisphere.
In fact, genetic and pottery evidence seems to point to multiple origins of people in the Americas. People in southwestern South America may have come from ancient Japan. People in eastern North America might have originated in Europe. People in western North and Central America could have come across Asian land bridges.
In addition, despite clear evidence of the extinction of large Pleistocene mammals in tandem with the spread of human beings, some archaeologists remain squeamish about “blaming” the extinctions on human overharvest. I am ambivalent on human origins, but the role of people in Pleistocene extinctions seems self-evident. Like it or not, people have been major determinants of ecosystem structure and function for a long, long time.
It all comes down to multiple lines of evidence. The more you consider different aspects of ancient culture, the more complicated the answers get.
It’s similar for cancer. There are multiple diagnostic tools clinicians apply to determining presence/absence, kind, and severity of malignancies. In my case, we now have several convergent lines of evidence suggesting that I’m no longer riddled with active tumors. But nothing definitive.
Last week, I met with doctors after having the PET CT scan the prior week. Dr. H, my surgeon, is comfortable saying that I am “cancer-free”, based on the radiology and the fact that he doesn’t see tumor tissue when he runs the videoscope into my throat. But the knot on my lung (which is visible in the CT, but did not take up much radiolabeled sugar in the PET), and the fact of generalized uptake in my throat mean we need to monitor. I’ll have another PET scan in 3 months. That should give my throat additional time to recover from the radiation, and let us see what the lung spot does.
I also met with a new doctor—a “palliative care” specialist. This guy’s charge is to manage my pharmaceuticals. You will recall that Dr. T, the oncologist, wanted to get me off the dilaudid and onto something else. Dr. S (palliative guy) talked to me for a long while. Palpated my throat and neck. Peered into my mouth. And put me right back onto the same dose of dilaudid I’ve been on for months.
So the upshot is that I am apparently and at least for the moment free of active cancer, and I have the opiates needed to keep me comfortable through the day. All in all, it could be a lot worse at this point.
Next month, I’m going to try traveling. I don’t think flying is possible, given that I still have wrenching coughing fits that bring up towels full of increasingly thick and gooey mucous. We’ll have to drive to Amherst for the AEHS Fall Conference. Given the bottle of dilaudid, I’m pretty sure it won’t be a problem! Of course, I can neither talk nor eat, which are sort of the points of a technical conference. Oh well. I’ll have to see how much caustic humor I can generate with my little electronic erasable tablet and fast-as-lightning handwriting.
Thanks for being here for me, everybody. This one and the one over at www.aehsfoundation.org will be the only updates this week. I’m getting stronger all the time. Who knows—I might make it to “functional human being” status yet. We’ll see.
Saturday, September 21, 2013
It Might Get Messy
HMS Beagle sailed from Plymouth, England in 1831 for a planned two-year trip to survey coastlines and islands around the world. On board was Charles Darwin, whose trip was funded by Josiah Wedgewood (an uncle-by-marriage, yes of “those” Wedgewoods) and whose job was to study geology and natural history and provide a suitably upper-class companion for the vessel’s Captain, Robert Fitzroy.
The trip actually lasted five years. On his return, Darwin settled on a small estate in the English countryside at Downe House with a young family and an inherited stipend (the museum at Downe House is well worth a visit if you can devote a day to getting there and back via train and bus from London. It’s also worth the short hike from Downe House to Down Town (spelled without the final “e”, for some reason) where you’ll find the church which Darwin served as an Elder and financial manager and a wonderful pub with hand-pumped ales and good burgers while you wait for the return bus). As Darwin started to sort his collections and publish his findings, he was taken increasingly ill by mysterious problems, mainly with his gastrointestinal tract. His perplexed doctors could do little more than recommend time “taking the waters” at various spas and increasingly toxic doses of mercury, thought (for gods know what reason) to be a sort of cure-all for mystery illnesses.
Nowadays we’re pretty sure Darwin caught one or more “tropical fevers” while hacking his way through rain forests in South America and the Pacific. And we wouldn’t treat with raw mercury compounds. In fact, the amazing thing about Darwin is that he published his greatest work, and plenty of it, during the years that mercury poisoning took hold and his health deteriorated from the putative medicines.
Just another reason Darwin is my hero. And he’s also an object lesson for consequences of shaky medical diagnoses.
I actually got a cleanish bill of health from one of my doctors this week. On Monday I had a PET CT scan (remember that’s the one where they inject sugar labeled with radioactive carbon isotope and monitor its uptake on the theory that cancerous tissue metabolism causes disproportionate uptake of the radiotag). The scan had its good and bad findings. For one thing, the big blood clot in my chest is gone, so I can forego the expensive and painful twice-daily injections of blood thinner. I seem to be generally cancer-free. There is a small (less than one centimeter diameter) hotspot on my left lung (I’ve had more and larger uptake spots in my lungs before that proved to be nothing), and my throat area generally took up more radiolabel than other tissues. But that might well be residual recovery from the radiation treatments. It’s not focused on specific loci that indicate tumors.
We’ll know more next week. I see my surgeon, who is the one who pushes the videoscope into my throat and looks for tumor tissue. So far he hasn’t seen any, and that’s why the sugar uptake in my throat is more likely due to generalized tissue destruction vs. recurrent cancer.
So, for the moment, we’re down to my continuing to rest and recuperate, and treating such residual symptoms as heavy mucous production and discomfort from the powerful antibiotic we’re using to fight off persistent throat infection. At the moment, my biggest challenge (cross-reference last week’s entry) continues to be getting off the dilaudid without incurring withdrawal symptoms. In the past I’ve done this myself, gradually diminishing my dose until I can just stop. I’m doing that now—today I’ll make another cut down to a total of 16 mg per day, one dose around noon and one around 8 p.m. Just in case, Dr. T (general oncology and hematology) has me scheduled to see another doc in her office on Wednesday (when I go to see Dr. H, my surgeon) who apparently helps with this problem and who may have additional advice regarding the constant dripping mucous.
Which is an artifact of the four long years of repeated treatment. Radiation damages mucous membranes and glands. My right parotid (salivary) gland was deliberately destroyed by my first course of radiation, as it was invaded by tumor tissue. Over the course of several operations, most of the lymph glands north of my belly region were excised, so flow of body fluids in my neck area is contorted. Seems likely I’ll be battling wet, drooling, hacking mucous production for whatever remains of my time on earth.
Of course, that’s a hell of a lot better than the alternative. Hopefully, and against the 80:20 odds, this last round of treatment really has left me cancer-free and tumors won’t recur. But if they do, I’m certainly feeling strong enough to take additional treatment, if and when it becomes necessary. I haven’t fought my way through sequential hellish treatment courses to give up any time soon!
As always, my thanks to you all for being here for me. This update, and probably one at www.aehsfoundation.org, are the only updates this week. But since it looks like I may survive for a while, I’ll be turning my attention back to that urban ecosystems book that’s been on a stop/start foundation for years. Now I’ve got time on my hands, I’m strong enough to work, and I have something of the freedom of an “independent scholar”. Like Charles Darwin. I just have to stay away from the mercury, and I should be good to go!
Friday, September 13, 2013
It Might Get Messy
Jazz musicians in the middle of the last century lived in a weirdly high-pressure world. If they had a gig, they worked from 9 pm to 2 or 3 am. Then they tended to go to after-hours clubs where the musicians gathered for cutting sessions and to catch up on the most up-to-the-minute music. Often the late nights went to dawn or after. During the day, recording, rehearsing and business (and in many cases day jobs!) had to be fitted in.
And of course pretty much everybody smoked tobacco and marijuana and most of them drank, some heavily. In that environment, harder drugs—injectable narcotics—were easy to obtain and could ease the stress of the crazy lifestyle. Addiction was common.
Three of the greatest music talents of all time—Charles Parker, Miles Davis, and John Coltrane—all struggled with heroin addiction. Parker never kicked, although he did at one point ruefully show an interviewer the needle tracks in his arms and say “that’s my car, my portfolio, and my house”. When Davis decided to kick, he moved into a guest house on his father’s property outside St. Louis, told the old man not to come in no matter what he heard, locked the door for 2 weeks, and broke his addiction—amazingly—on his own. Coltrane had a religious revelation and—even more amazingly—went cold turkey from both heroin and alcohol.
Of course, he later—and not much later—died of liver cancer. Parker died of pneumonia and bleeding ulcers, although when he died he had advanced cirrhosis, and a recent heart attack. The Medical Examiner estimated his age at 50 to 60. He was 34.
Despite wrestling with addiction(s), between the three of them, they changed not only jazz, and not only music, but the broader world of the arts multiple times. These gentlemen were geniuses, and no mistake. And their brains were so powerful that they could revolutionize whole fields of endeavor repeatedly. Awe-inspiring.
I’m no genius. And I’ve revolutionized precisely nothing. Unfortunately, the only thing I have in common with Parker, Davis and Coltrane is a physical addiction to opiates. Here’s the story.
I’ve been really, really sick the past couple of weeks. This was worrisome. I’d grown strong enough to get to archery range, haul the 40 pound target downrange, and repeatedly cock a crossbow with a draw weight of around 300 pounds (reduced one-half via an ingeniously simple rope cocking device—meaning I have to pull 150 pounds to cock it), and shoot a dozen or two dozen arrows per trip. And I was sufficiently back to strength to get out hiking in the local wilderness area taking photos and chasing snakes. So all of a sudden getting so ill that I was coughing up large amounts of blood, had blood in my vomit and feces, could barely get myself out of my recliner, had vomiting fits in morning and evening, couldn’t eat, and couldn’t hold down enough liquids to stave off dehydration was disturbing.
We called the doctors. They squeezed me into their schedules on one day’s notice. First we visited my oncologist/hematologist. Her office decided I wasn’t quite sick enough for hospital admission, but that I needed to return early the next morning to start intravenous feeding and medication.
Dr. H, my surgeon, was next. He ran the (now familiar) videoscope into my vitals via my sinuses. Could find nothing wrong, in fact he said I already looked better than when he’d seen me two weeks prior. But he was also worried about my sudden turn for the worse. We talked for a while. And I saw the light come on. He asked “have you been cutting down your dilaudid?” I told him I had. He said (and I’m paraphrasing) “Dude. You’re having withdrawal symptoms, you idiot. Why are you reducing your dilaudid dose?” I said “I don’t know. I thought you were supposed to try to get off opiates.” He said no, you try to get off opiates if you don’t need them and/or have an intense psychological need for higher and higher doses. He said that in my case, I needed dilaudid for therapeutic reasons. Taking it through the day let me feel good enough to function. To go to the archery range. To take daily walks. To help out around the house. To read and write. Basically, the traumas wrought on my body were so devastating that I needed the pain-killing, mucous-suppressing, relaxing benefits of the dilaudid. There was no reason to cut it out, and every reason to continue taking it.
And I thought “Duh!”. I know the symptoms of opiate withdrawal—I took the Rutgers U. 1½ credit course titled “Plant Hallucinogens”. I should have realized what was happening. Instead, I got pretty scared about pouring blood out of my throat and being completely dysfunctional.
Now I’m back on my maintenance dose of dilaudid. I feel good during the day. I can exercise and build my strength, and write and read all day without whining. Practice guitar. Write new songs. Basically, I have as much life as someone with their tongue hacked out, their oral cavity and throat re-plumbed, and taking twice-daily doses of powerful blood thinners to prevent the blood clot in the lungs from busting loose and causing a massive heart attack or stroke can have.
In fact, today we visited the National Arboretum on the fringes of D.C. for the first time ever. I can’t say I actually “hiked”, but I did a lot of walking and stayed upright for a couple hours. And shot most of the photos offered as lagniappe below.
As always, you have me enormous thanks for reading this and being here for me. You all are absolutely helping to keep me alive, and you give me every reason to keep battling physical debilitation. With the assistance of necessary medications. Thanks, everybody! This blog and the one at www.aehsfoundation.org will be the updates this week. “Talk” to you ‘later!
Saturday, September 7, 2013
It Might Get Messy
Django Reinhardt lived to play guitar. He was born in 1890 Belgium, but grew up Roma (Gypsy) in France. The discrimination against gypsies, which persists to this day, was severe in the Europe where Reinhardt grew up. Reinhardt learned to play guitar making music for Roma social gatherings. As his skills grew, he began to reinvent guitar music. His blisteringly fast runs, creative and sometimes exotic melodies, and ability to fit in with instrumental combos and singers made him a premier guitar player of his time. His intense workouts with jazz violinist Stephan Grappelli remain fresh and unique in the world of jazz. Reinhardt was like Coltrane, in that he spent his free time practicing, practicing, practicing. He loved the guitar, and he loved making music. And he made his living as musician. He played with many of the giants of U.S. jazz when they toured Europe, and he made a tour of the U.S. in his later career.
One night in a Gypsy camp in the Paris suburbs, Reinhardt’s caravan wagon in which his family lived as they moved from settlement to settlement, caught fire in a kitchen accident. Reinhardt was with neighbors at the time, but burst into the flaming caravan to rescue his wife and young child.
And in the process, his left hand (the one needed for forming chords and moving notes on the keyboard) was pretty much destroyed—burned such that only two fingers were even marginally functional. He must have figured his life in music was over. Without a fully functional left hand, it’s impossible to play guitar. In the hospital, a family member brought Reinhardt his instrument. No doubt with a deep sigh, he started re-forging his awesome musical technique. After a year of incredible hard work, he had invented methods for working around his injury. And his musical sense was undimmed. Much of his most famous music, and most of his recordings, were made with only two fingers!
The message I take from this is that even when your primary ax is destroyed by fate (I’m thinking of my voice, on which I built my career, teaching, and public speaking), you can recover via hard work, creativity, and most of all avoiding the deep depression that such a loss is likely to cause. I have spent the past year and more finding ways to work around my lost voice. It’s not pretty, and it’s a real slog, but I’m getting there. Django is the idol, patron saint and primary god I invoke in my struggle to make a silent life work. I’m no Django Reinhardt, but he’s inspired me to follow his example and work my way out of the hole.
But these aren’t the droids we’re looking for.
Oh wait. Yes they are. But while pursuing these droids in the depths of Mos Eisley pub culture, I’m afraid we have to deal with a divergence.
I have all of a sudden regressed in what looks to me like dangerous ways. The last few days, I’ve been waking up in the morning with my chest tight and congested. These are symptoms associated with pneumonia. For somebody in my condition, pneumonia is life-threatening. On top of the chest issues, I also cough up bloody sputum in the morning, often supplemented by thick mucous with dark streaks and blobs embedded. Blood from my pulmonary system? Potential for acute problems to pile up.
Odd thing is, I’m still on massive doses of Augmentin, working to suppress my chronic throat infection. This may be a bad sign. If the throat infection has moved into and is prospering in my bronchi, it may be a virus with the attendant difficulties in treatment.
Along with the lung problems, I’ve started vomiting rather violently again. This could be related to the airway issues, or maybe not. I’ve been feeling so good during the day that I’ve been able to skip my daytime dose of dry-out medications, to which I add Reglan and Zofran, both intended to maintain gastrointestinal health. The latter is a powerful anti-nauseal.
It may be that the new vomiting fits are an artifact of skipping these drugs. I’ve already started the experiment to find out. Today I talk both Zofran and Reglan after my stomach settled enough to hold dissolved meds and their carrier fluid (water or coke) down. With residual nausea today, I haven’t eaten anything (got all my calories today from a couple of full-sugar decaffeinated Coke) yet. Tomorrow, I’ll pour in my full four cartons of liquid food, and see what happens.
My failure to get caught up on email is due to these couple of days of illness. My apologies, and I beg your patience. I’ll get back to as soon as I can. With a little luck, my lungs are a temporary problem and I can stem the vomiting without too much trouble. We’ll see. In the meantime, I send my love to you all. And attach a few recent photos for your delectation. Thanks all!!
Notes
[1] A definitive and lively survey of music and culture of Roma in Europe is Gypsy Jazz: In Search of Django Reinhardt and the Soul of Gypsy Swing. By Michael Dregni, published by Oxford University Press in 2008. The focus of the book is on Reinhardt’s life and times, but it paints a poignant picture of Gypsy life between the World Wars and immediately after.
Sunday, September 1, 2013
It Might Get Messy
The musical scale is more twisted than you think. I learned to play music in a way that handicapped me severely. As a clarinetist, even one who play the enlarged alto version of the instrument, I never learned to read in bass clef. Which is the low notes, played with the left hand on the piano, that are annotated completely differently from the right hand, which is in treble clef.
But that’s not the issue here. The real problem is that those of us who learned music in “modern” times (roughly since the mid-1800s) learn that sharps and flats in the same interval (say, like A sharp and B flat) are “enharmonic”—they are the same note. You can see this on a fretted guitar—A sharp and B flat are sounded at the same fret, between the A fret and the B fret. But, from the perspective of the physics of sound—the wave forms generated by vibrating strings or reeds—this is not strictly true. If you run up musical octaves (like middle C to high C, a reach of several octaves) and divide by intervals of perfect thirds, vs. intervals of perfect 5ths, you don’t come out to exactly the same place. In other words, between the notes that define the octave, the intervals you play determine how close you are to being in tune at the end.
This is very weird. And discomfiting to modern musicians. It turns out that modern pianos are tuned to a scale called “equal temperament”. Basically, the unequal intervals are averaged over the length of the piano keyboard. But there are many alternatives to equal temperament. And many of them were used, for hundreds of years. The thing is, you can tune a piano so that certain ranges of keys yield very close to perfect harmony whether you play by thirds or fifths. But this pushes the “error” in vibrations off to the ends of the keyboard. Which then sound out of tune.
Quirky, no? The simplest (and, in the past, most popular) alternative to equal temperament was to play sharps (say, A sharp) as 5/9 of the distance to the next full tone (B in this case). And to play the corresponding flat (in this case, B flat) as 4/9 of the distance. In this tuning, your sharps are a little sharper than the corresponding flat, which is flatter than in equal temperament.
None of this would matter much if it didn’t have serious implications for musicians playing orchestral string instruments—violins, violas, cellos, basses—which are not fretted. Good string players, when not constrained by playing with fixed-tuning instruments (like pianos), instinctively play such that their sharps and flats are NOT truly enharmonic. They play them more or less by 5/9 vs. 4/9 system [1]. Then, when they are playing with fixed-tuned instruments (pianos, organs, most woodwinds) they default to playing true enharmonics—with the sharps and flats identical.
Think of the incredible feat of memory this is. It seems (from [1]) that the musicians don’t necessarily do this consciously. Their muscles and their ears are so attuned, from countless hours of practice, that they can make this switch subconsciously. Their brains, ears, and fingers form a memory system that is almost unbelievable.
I bring this bit of esoterica to your attention because memory, just simple brute-force memory, is important when doctors are attempting to diagnose post-cancer-treatment physiological difficulties. You have to be able to recall what you did for the past week when the doctor is trying, say, to understand why last weekend you were sick for 3 days, pouring thick, ropey mucous from mouth and throat.
I took ill late on Friday, and was sick all weekend, especially Monday. On Monday my throat hurt all day, and I was generating mucous like a hagfish on a whale carcass. So I emailed the doctors. Dr. H was back in town from vacation, and instructed me to get squeezed into his Wednesday schedule. By Wednesday, I was feeling fine. Dr. H scoped me, said everything not only looked good, it looked better than when I was there a couple weeks before. He asked about things I might have done to precipitate the weekend’s throat crisis. He asked specifically about eating ice cream. Told him I hadn’t had any for a couple of weeks. He shrugged his shoulders and sent me on my way, since I was no longer ill.
But I had forgotten something (I hate to say my brain is getting old, but…). On the prior Friday, I had been in to see the dieticians for a “swallowing test”. The technician fed me little scoops of an ice cream substitute, then peered into my throat with a flashlight. Where she could see the little bolus of ice cream perched on my dysfunctional epiglottis. Sips of water didn’t help push the ice cream into the proper channel. Everything felt good, though. I thought I was getting the stuff into my gastrointestinal system.
But apparently I wasn’t. I was aspirating at least some of the ice cream, and coating my airway with thick goo. My airway responded by manufacturing substantially more goo on its own. Leading me to be ill for 3 days in a row.
Duh. If only I had musician’s memory. I emailed Dr. H as soon as I remembered I’d been swallow-tested right before my throat came apart.
Dr. H suggested I give my throat a rest, and don’t eat ice cream for a while. To which, given how sick I was last weekend, I readily agreed. Dr. H had no advice for my faulty memory. Not his problem… .
This and a new piece over at www.aehsfoundation.org, will be the only entry in the weblog empire this weekend. Don’t forget Dr. Crossley’s wild west blog at http://www.daccrossley.typepad.com . Yesterday we spent a pleasant day out on the Eastern Shore with Dan and Liz, Lance, Phoebe and Jen, Jeff and Jenny, and Mike and Laura. My first outing since visiting Antietam with my sister a number of weeks ago. I really AM recovering.
Thanks for being here, everyone. You’re a huge chunk of the reason I’m getting better. Love to all!!!
Notes
[1] A wonderfully readable little book on this topic is “How Equal Temperament Ruined Harmony (And Why You Should Care) by Ross W. Duffin, published in 2007 by W.W. Norton & Company. This book makes the complexities of acoustic physics understandable and interesting. Not an easy task, given the esoteric nature of the subject and the hellishly convoluted nature of the underlying physical reality.
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