Got cancer? Check your dignity, vanity, ego, poise, self-respect, pride, and, oh yeah, personal hygiene, at the door. And don’t expect to pick them up any time soon. If ever. Get used to bodily fluids, in all their evolutionary diversity. Become one with disquieting and uncomfortable medical devices, for they shall be one with you. Mainly, be prepared to be disabused of the thought that you are in charge of anything whatsoever including your own physical corpus. It will never be clear precisely who IS in charge of what when where and why. But it will be irrefutably clear that is not you.
And what brought on this ridiculous tirade? Well, last week my gastrointestinal tract, which has been generally fussy and difficult to stuff with sufficient calories to maintain my body weight, rebelled rather more actively. Pretty much every 250 ml carton of “tube feeding formula” poured into my (degenerating) feeding tube system induced immediate screaming attacks of acid bubbling out of my stomach and into my throat. A major part of the problem is the long non-functioning of my epiglottis (the little valve that separates respiratory from digestive systems, destroyed in the first round of radiation years ago) and the surgical work-around that pulled a big flap of flesh from my left shoulder over into my throat in an attempt to maintain at least the most critical operations of the system. In practice, the epiglottis, the result of millions of years of evolution, is a smart system. It knows what its job is, and knows how to do it. The slab of shoulder muscle stitched in its place is a dumb system. It can only be there. It can’t function in response to changing needs. Which means that there’s not really anything plugging the plumbing north of my stomach. When too much fluid is present in my gut, there’s nothing fighting to keep it down. It just rises into my throat, stinging painfully along mucosal surfaces not designed to handle digestive fluids. Coupled with digestive processes that seem to be operating at very sludgy velocities, it’s an uncomfortable mess.
The only responses available are pharmaceutical and logistical. And, since those categories also apply to the entire suite of system dysfunctionalities rendered by the cancer and its treatment, I live in a private little world surrounded by bottles of pills, pitchers of water, boxes of liquid food, 12 packs of Gatorade, jars of Vaseline, mountains of paper towels, measuring cups, 60 ml syringes, containers of cough syrup, and more. It’s a freakin’ nightmare, like some dark grocery store from David Lynch’s subconscious on a particularly bad day.
Nor does it end there. While there are difficult problems at the north end of my digestive tract, the south has its own troubles. These largely arise from the deadening effects of chronic consumption of narcotic painkillers. Thus, Lynch has stocked the shelves of this sinister country store with big-ass containers of laxatives that operate on their own cranky schedule.
And that’s still nowhere near the finish line. I got meds for blood pressure, anxiety, sleep induction, chronic and acute nausea, thyroid damage, mucous thinning, and more. I swap out around a dozen clean tubes every day into the permanent piping cut into my airway from just under my chin. The hole into which all this plumbing is fitted runs rather directly into my lungs, making something basic like showering into a dangerous exercise risking pneumonia with every drop of soapy water.
Oh yeah. We haven’t even talked about dental hygiene. From lack of use, my mouth is slowly sealing itself shut. I have a prosthetic exercise device, which diligently applied, can help keep enough of an opening to fit an infant toothbrush through. Of course, in the absence of a tongue, a mouth full of toothpaste is…a mouth full of toothpaste for a long time. For about half an hour after brushing my teeth, I have to sit in a proper position to help the residue slide into my gut rather than my airway. Which latter is just another pathway to pneumonia. Which is now, in what is a quiet period for my cancers, the very immediate and real threat to my life.
Which cycles us back to the opening paragraph to this week’s entry. Except for being the body housing the cancers that kicked off the medical responses that have left me perched here in a nest of stuff prescribed by doctors, dieticians, social workers, nurses, speech pathologists…in other words, everybody except me…I have pretty much nothing to do with anything physical that happens to me. I got Jesse, who between work and school can usually check at around midnight to make sure I’m still breathing. Colin’s generally around to whisk me to the emergency room as needed. Cathy starts her day by arranging my medications so I’m overdose-proof. Molly is often here on weekends to help keep my nest area stocked with essentials.
I’m pretty much in the hands of medical professionals, family, and friends. Leaving me to read books and guitar magazines, write, fart around with photography, bad art and bad guitar and bad song writing, and kick the TV between the Food Channel, History, Discovery, and dark and ominous movies. I’m thinking it’s a good week for Eraserhead, Twin Peaks, Mulholland Drive, and Inland Empire. And, just for variety, I’m gonna throw in Route 666 and Dark City. Just to prove that SOMETHING, anyway, is under my control. Dammit, I may be at the mercy of cancer and the medical profession. But I sure as hell can plug in scary DVDs of my choice. Assuming I’m not having muscle cramps like I got after my two days of very long walks this week after Beth and Maggie flew in from the coast (their arms looked ok) to help get my butt kicked into gear.
Thanks for being here, everyone. Use ‘em while you got ‘em. They are NOT forever. And before you get there, a lot of other stuff is NOT under your control. Rock and roll while we still freakin’ can!!!
In the absence of any actual news originating in the activities of either major political party (or any of the minor ones, for that matter), the Washington Post has turned to lighthearted (if weary) satire. The entire 20+ field of potential Republican candidates are in New Hampshire this week eating pancakes and hash at diners and meeting what they characterize as “average Americans”. I’m a little unclear on what “average” means in this case. Given some of the whack jobs scuttling around New England with Republican Party credentials, I have to assume that “average American” is sort of an intellectual and intelligence challenge for the “average Republican” to meet. Because it doesn’t take long listening to Ben Carson, Lindsey Graham, Rand Paul, Carly Fiorina, or Bobby Jindal to realize these folks have a long climb to reach the peak of the bell curve. And reporters for the Post are clearly having difficulty turning the non-activities of this dysfunctional gaggle into worthy news copy. So they got down into the weeds, turning up such interesting tidbits as Donald Trump’s people spending their day handing out Reese’s Peanut Butter Cups to any takers—most of whom seemed to be reporters.
It’s obvious at this point, a year-and-a-half away from the actual election, that the candidates fielded by both major national parties are substantially less than inspiring. Which, given the status of the world at large, is not a good thing. It’s a complicated, delicate, and dangerous time in the social development of the human species. We could use some smart, fast, honest leadership to deal with it.
Instead, we get Reese’s Peanut Butter Cups. The one thing that might’ve bailed this election out, in its time, would be coverage by Hunter Thompson. Thompson could turn the nightmarishly dull and repetitive electioneering process into apocalyptic threats to the very foundations of civilization. And make you laugh so hard while doing it that you wet your pants. Instead, we get Reese’s Peanut Butter Cups.
Which is our cue to turn our attention to my physiological contretemps. From a cancer perspective, I’ve had another healthy, strong week. Meaning, as we know from prior entries, that I’ve stolen another 7 days from death, and given myself one more week to photograph flowers and search for the elusive remnants of Piedmont copperhead populations.
But it doesn’t mean everything in my world is hunky dory. Remember I keep myself alive by pouring nutritive liquids into a polymer tube sticking out of my gut. Well, it turns out that age, frequency of use, and contents affect the effective life span of said tubing. Of the original external tubing from the feeding apparatus, I’m down to just a couple centimeters. The rest, after constant use and application of acidic liquids, has weakened to the point of falling apart in leaky shreds. The remaining two centimeters of viable tubing is sufficient to connect to plumbing hardware from Lowe’s, allowing me to keep this particular feeding hardware going for a little more time.
The problem is that when it finally does fail for good, the alternatives are fussy, delicate, and not as sturdy. It is not possible to install another copy of the present apparatus (we tried once and it wouldn't fit down my throat, due to a “growth” of unknown origin and composition blocking things up, and now my mouth is starting to seal shut from lack of use). So the Doc and I put together a duct tape-and-gorilla glue "McGuyver" improvisation in an attempt to keep this feeding apparatus alive for at least a little more time. At some point it is going to simply fail (drastically), probably on a Saturday afternoon or Sunday night (as Dr. H points out, the hardware invariably picks the most inopportune moments to give up its little polyethylene ghost). I do actually have the kit he gave me to take to the beach (back when we hoped I could make the Bubba Beach Fest) for the fussy alternate method we're going to have to install as a substitute for the more robust and functional plumbing I'm presently sporting. However, home use of the tube kit would require me to stab myself in the stomach with a sharpened screwdriver or pointy stick harvested from the yard. Said stabbing needs to go through the muscles of my body wall and into, but not through, my stomach itself. Having read a number of accounts of Hari Kiri as practiced by Japanese military officers in World War Two, I'm not sure I'll be up to the task... . So we're just gonna have to ride this horse as far as it will take us, and Dr. H will apply the shiv to my belly when the time comes.
Oh well. As my Mom told me, “getting old isn’t pretty.” And later, when the COPD caught up with her, “getting old sucks.” When I tally up the score sheet for my old age at the moment, I have yet to reach the “sucks” standard. With springtime here, the flowers blooming, just waiting to have their portraits taken via refracted (vs. reflected) light (my favorite photographic trick) and the snakes and salamanders shaking off the winter cramps and stretching their muscles, things aren’t too bad. My breathing remains surprisingly clear and deep for someone with terminal lung cancer. I can shuffle around (not too fast and not too far, mind you) with my camera and entertain myself with guitar, cut paper art, books, and movies. All in all, it could be worse (and in fact will be, but no sense worrying about that yet). Remember to use ‘em while you got ‘em, because the bright, warm greens of spring will be peaking soon. Here in the piedmont, we’ll be up to our asses in migrating warblers in a few weeks—the juncos (except for one cranky individual) have already left and headed north to nest. Chimney swifts usually arrive here around the third week of April, followed by the flocks of those gorgeous warblers. I’ll see what I can do to get some good early spring photos up here next week for your delectation. I love you all, and thank you deeply for being here for me. Rock and roll, everybody. Getting old may not be pretty, but with a little luck we can all push off the “sucks” stage into the far future!
Having a terminal illness isn’t all doom and gloom. There are some truly rewarding upsides. For instance, while you all are deciding whether you want to poke your eyes out with hot knitting needles vs. voting for Hillary Clinton or Jeb Bush, I’ll be “laughing in my grave”, as Mick Jagger said in “Memo From Turner” (be sure to get the original with Ry Cooder on slide from the movie “Performance” soundtrack. The rock version the Stones recorded later and put on the Metamorphosis compilation is good in its own way. But Cooder’s guitar makes the soundtrack cut one of the best slide guitar pieces ever recorded…and that puts it ahead of a nearly 100 year output of slide cuts, ranging from one-string alcoholics playing to the devil in the steamy heat of Los Angeles to the elegant and sophisticated pedal steel backing pretty much every hat country yahoo who ever bought night-rate time in a Nashville studio.
But here’s the thing. I’m actually supposed to be dead now. In the timeline my physicians and I worked out over the past few years, I should’ve gone down sometime over the autumn or winter. You all should have had your chance to grieve (which I hope you will keep to the socially acceptable minimum, I’m not really the kind of character who deserves a whole lot of moist sadness when I check out of this restaurant and head for home). And then your chance to have a wicked series of blow-out parties in my honor. If you really want to have fun, you can track a nifty cartoon of my lifetime in the beverages served. Start with warm gin poured directly into partially-dumped-out cans of 7-UP (our high school standard). Move on to college: Colt 45 Malt Liquor, Boone’s Farm Apple Wine, and Southern Comfort (I actually have no idea if any of these products are currently manufactured and sold. I’m sure you can find viable substitutes. Think “cheap” and “high-alcohol content”). Grad school—the cheapest beer available. We used to drink Red, White and Blue (the downmarket product of Pabst Blue Ribbon, hard as it is to believe that PBR wasn’t “downmarket” enough on its own). We liked it because the RWB cans were slightly skinnier and taller than standard soda cans, so if we drank while driving we could cut the top off a coke can, slip in the RWB can, and feel relatively secure cruising along Route 17). Early career—jug wines will do. Of course, what’s sold in jugs (and boxes) these days would have qualified as high-point varietals back in those days. Still, you’ll get the relative context. Oh. Throw in a bottle or two of Wild Turkey bourbon. When I spent 3 months living in a semi-dry (and untoileted) log cabin on the Potomac River wildlands in the 70s, the Turkey was a nice touch for watching sunsets over the river. When you get through all that crap, you can finally give yourself a break. Get ahold of some seriously massively fruity, thick and syrupy, hugely fragrant, Robert M. Parker style reds and whites. I preferred big-ass Zinfandels for reds and Viognier for whites, but anything that is viscous enough to require ketchup-bottle rapping on the bottom to get it to flow into the glass will suffice. By the time I got to this point in my drinking career, I had pretty much given up getting trashed and driving as sequential activities. I suggest either walking home or passing out on-site, and dealing with the hangover in the morning. For the latter, you will find a good old fashioned diner, serving enormous breakfast omelets with plenty of fried potatoes and buttered toast, along with mightily fragrant coffee, will work fabulously.
Which brings us pretty much up-to-date, where I continue to deal with the oral cavity cancers no doubt triggered by that long, fun career of alcohol consumption. I seem to have remained physiologically stable for another week. And every week that I’m stable is another week I’ve stolen from death. There are innumerable “lesions” throughout my lungs and the chest cavity into which the lungs fit. The doctors are careful to state in formal reports that these could be “scar tissue” or “inflammation” associated with chemotherapy and radiation. But the probability of the “lesions” (a medical/physiological term applied by lazy and/or underfunded researchers for localized ugliness that nobody has the interest in or money available to ascertain their precise nature. We ecologists use the term for everything from visible tumorous growths to scabs or cuts on the mice, fish, snakes, lizards, birds, etc. that we study in the field) being cancers or pre-cancerous blobs is at least as high as the more benign alternatives. The bottom line is that I am long past the possibility of magic bullets, miraculous recoveries, or unexpectedly successful treatments. Sometime in the relatively near future, at least a few of those “lesions” scattered throughout my thoracic infrastructure will spring to cancerous life. While the docs anticipate re-starting treatments when the time comes, they acknowledge the reality that the efficacy of any of the applicable treatments is now much lower than when they were first-employed novelties to naïve cancer cells. Through 4+ years of treatment and inter-treatment recovery interregnums (is that a word? Should it be a Latinized formulation like “interregna” or “interregnae”? You know, if I wanted to be clear and unpretentious, in the Strunk and White sense, I would probably use the word “periods” in its place. But I say fuck it. I’m staying with the snooty-scientist-uses-big-words communication technique here), the cancers have been evolutionarily modified to be less sensitive to specific treatments and even whole treatment categories.
Which means I’m fighting an inevitable losing war. Please pardon an imperfect and ridiculously overblown analogy. 300 Spartan warriors and 700+ Thespians and Thebans (with a few hundred additional warriors from other, smaller City-States) halted the advance of a conquering Persian army of hundreds of thousands of elite troops for three crucial days in 480 BC on a mountain trail at a spot called Thermopylae (“hot gates”, for some reason). The time the Spartans and their understudies bought for the Greeks allowed the Greek navy to decimate the Persian fleet, and for the orderly and complete abandonment of Athens, the primary target of Persian wrath. While Athens burned to the ground, the populace was off in the deep agricultural hinterlands, chuckling at Themistocles’ successful strategic endeavor, eating olives and drinking retsina. The Persians went on to ransack almost all of mainland Greece, but were unable to locate and kill or suborn large numbers of local people. When the Persians finally quit in frustration (and running out of cash to fund the operation), the Greeks simply rebuilt the infrastructure of towns and cities and moved back in. The decline of traditional city-state political operations was way shorter and less destructive than it would have been otherwise. The relatively short delay in Persian conquest changed the world forever by uniting disparate Greek populations into a single nation and preserving important social processes such as democratic elections of leaders (albeit with voting rights limited largely to powerful and wealthy men), public debate about critical issues of the day and voting for response priorities and activities, voting for how public funds were to be used, and others.
It is not an exaggeration to see unimpeded Persian conquest (i.e., without the Battle of Thermopylae) resulting in gross distortion and even loss of Greek legacies in politics and governance, war, trade, economics and financial innovations, public health, and societal decision making on major public expenditures. In other words, without Thermopylae, the world today would have been a very far cry from what it is now. To be blunt about it, think “no Thermopylae, no democracy.” Also consider a lengthy list of freedoms and political innovations that kicked Western civilization into high gear, matching and eventually surpassing those of the great civilizations in the east.
OK, I think the above is plenty to illustrate the importance of Greece to the modern world, and the importance of Thermopylae to Greece. The analogy with my health runs something like this: for a long time, my physiology festered in the face of cellular challenges, as the relationship between Greece and Persia deteriorated over the sequential tenures of three big-time kings—Cyrus, Darius, and Xerxes (skilled military leaders all, as my radiologist, surgeon, and oncologist are skilled medical leaders). The long festering reached the breaking point during the reign of Cyrus, my festering pre-cancerous lesions went over the top when the surgeon ran an emergency bioassay with tissue scraped from the tumors on my tongue and parotid gland. Surgeon handed me off to the Radiologist, who battled some of the malignant tissues, as Cyrus handed the “Greek Problem” to Darius. My radiologist got out of the way and handed me off to surgeon and oncologist as Darius stepped aside in favor of Xerxes. My doctors struggled with the maturity and aggressiveness of the cancers, as Xerxes struggled with the invasion and finally spread his forces across the Grecian landscape. Eventually the Persian presence in Greece cost more than it was worth, and the Persians retreated. Although they didn’t go far, and they were around to impede Alexander’s later spread across the lands of western Asia and deep into the east. My docs pounded the fighting present and future of the big, painful malignant growths in my oral cavity. Finally, Alexander conquered and consolidated disparate nations, cities and towns, and their natural resource foundations. Finally likewise, my cancer is going to conquer my disparate physiological and anatomical infrastructure, and kill me.
OK, you caught me. This analogy is clumsy and forced. It generates precious little insight into the cognitive implications of cancer. I’m afraid that, as weak as this “Analogic Analysis” is, I rather like it.
One of my fondest hopes, should it turn out that I am drastically wrong about the implications of death and there IS some form of afterlife, are to high-five Themistocles, Leonidas, Cyrus, Darius, and Xerxes. Oh, in addition to Jimi, Janice, Jim Morrison, Dime Bag Daryl, Keith Moon, John Entwistle, Charles Darwin, Wasily Kandinski, et al.
That wraps it up for this week. I’m doing well. I’m still alive. Spring is here. It’s time to not only live ‘em while you got ‘em, but to live ‘em really intensely as the ecosystem changes almost before your eyes as spring advances. Remember I love you all. Have a fantastic spring 2015, everybody!! And thanks, of course, for being here with me.
For your amusement and edification (sp?), I append a few photos I took this week of our suburban landscape coming to biological life. Enjoy!
Man, I am gonna be really pissed off if I die right before we establish contact with extraterrestrial life. I’m a lifelong biologist (I did my first series of fish dissections to study parasite loads for the 5th grade science fair). I’ve seen ecosystems from tropical forests to Mediterranean deserts, from blue water oceans to swamps to alpine tundras. I’ve turned over rocks from Philadelphia industrial yards (where I popped up a nice little brown snake) to remote fly-in New Mexico highlands. And the most important lesson the world taught me is that life is an inevitable, integral outcome of physics, chemistry, and geography. Which means that life is not, can not be, a uniquely earthly phenomenon. It’s as universal as matter and energy. It’s everywhere. Of course, we’re still left with the “Fermi Paradox”: if life is so damned abundant and universal, where the hell is it? Why aren’t we up to our asses in extraterrestrial alligators? Oh yeah. I know I promised you a rant regarding urban biodiversity for this column this week. But I’m kicking that can down the road (where hopefully some needy person can find it and turn it in to a metal recycler for cash) in favor of a more immediate and interesting topic. We’ll get to the biodiversity screed sometime soon.
So, at the moment, why raise the issue of life elsewhere in the universe? Did the SETI (Search for Extraterrestrial Intelligence) people turn up a television broadcast from a far corner of the galaxy? Did somebody finally smuggle an “Alien Gray” in a jar of formaldehyde out of Area 51?
Not quite. But. Radiotelescope networks have been turning up an interesting and inexplicable signal for a number of years [1]. These high-frequency radio bursts arrive here on earth years apart and from various directions “out there”. And, oddly, the more we find out about them, the less explicable they get [2]. The weirdest thing may be the simplest: collectively, the ratio of arrival times of highest vs. lowest frequencies are consistent multiples of a single number: 187.5. That consistency rules out the enormous number of possible causes that come with certain physical variables (such as exploding or collapsing stars), because the ratio would be altered by interstellar dust or gas that is distributed more-or-less randomly (or at least certainly not in multiples of 187.5!). The original author who identified the signals thinks they’re most likely from something like cell phone towers here on earth. But every report I’ve read, even by conservative astronomers, acknowledges the possibility that the bursts originate from alien intelligence.
Taking us right back to where we started this entry. If we’re about to find out that there is indeed life off-earth, I sure as HELL want to be here for it. Why? Well, first, because it would mean my life’s driving principle is closer to right than wrong--that biology is as fundamental as physics and chemistry. Second, because my deeper belief that “we” (in the broadest sense, that is living things) are actually the sole manifestation of godliness. There are no “hidden” gods, or God, in “heaven” or some other “plain”. The living things here in the physical universe have the total say as to whether we bring things closer to heaven or to hell. It’s a choice we make, and a result of our activities. Job 1, people. Call down the good. Trash the bad. Bring heaven one step closer to reality.
OK, enough of the existentialist bullshit. The question at this point is, how likely is that I’m gonna live long enough to see ANY scientific advancements, never mind the appearance of extraterrestrial life. And the fact is, I don’t know. And that is an ENORMOUS positive change in my condition. By medical consensus, I should have been dead weeks to months ago. That I’m not only not dead, but breathing relatively clearly, with pain levels receding, extremely weak but otherwise vaguely functional, are big-time positives. I was privileged to have a whole group of old friends, clients and colleagues visit for an afternoon this week. I was asked what my prognosis is. Best I was able to give was what Dr. T (my oncologist) thinks. Her belief at the moment is that at some point in the relatively near future (weeks to months) some of the many small cancer loci in my lungs and chest cavity will free themselves from the hammering of last year’s radiation and chemotherapy and begin to grow again. At that point, I’m right back in the crapper, living with the nightmare physiology effects of the chemotherapy, and possibly radiation if the mass in my chest proves to be malignant rather than a blob of scar tissue. Once again I’ll be facing the decision to live with the hammering or to let myself slip away from this life and return my borrowed shares of the universe’s matter and energy to give some other living thing(s) the chance to exist. I will say this. The daily course of the manifestation of my illness is actually improving over time, rather than deteriorating as expected. Biggest problem I face now is the build up over the course each day of volumes of saliva and mucous throughout the surgically reconfigured plumbing of my mouth, sinuses, and throat. In the evening, when the knock-out effects of antihistamines aren’t an impediment (I should be sleeping long hours as possible, and napping as necessary) I take heavy doses of same to cut the mucous production and let me sleep.
So it could be a damn site worse than it is now. Surprising my doctors and especially myself, my physiology and immune system are battling back against the forces of malignant evil. How long they can hold out is the key question now. I would dearly love them to keep me alive until we get rock-solid evidence of extraterrestrial life. At that point, I won’t be exactly “happy” to die. But I’ll have fulfilled the top item remaining on my Life List of Things To Do Before I Die. At which point in fairness to the universe (not to mention my long-suffering family and friends) I’ll die, smiling and remembering the remarkable things I’ve seen and done, and the remarkable people (those same friends and families, and others) I’ve had in my social circle.
Hard to ask any more of life than that. And I know you all out there in the world are working on my behalf because I truly feel your thoughts, prayers, and reminiscences on my behalf. Thanks for being here for me, everybody. Per usual, I deeply love you all. And I implore you to use ‘em while you got ‘em. Because they are not forever. And of course there may be a shitload fewer of them if those aliens turn out to be millions of years deep in technology and hostile to earthlings. I recommend two short-term fixes to assist your thinking about these issues. The movie “Screamers”, starring Peter Weller will give you insights into the negative potential for humans spreading across the galaxy (although no true “alien” aliens are actually involved). And the movie “Contact” by and starring Jodie Foster will give you a more nuanced vision (eerily similar to the present radioburst findings) of the possible lead-in to the initial dealings with incontrovertible aliens.
Tune in next week for the first flower photos of this spring! I’ve already taken some (first ones earlier today), and will process them tonight. After discussions with my colleagues this week, it is apparent that there is an appetite for the two other weblogs I put on hold while I battled cancer. I think I’m strong enough to tackle the 3 blog empire again, so look for referrals to the new start-up to the new versions of the old and dormant blogs. My love and gratitude to all of you. Having you have my back is just the most comforting thing on...uh...earth... .
References
[1] http://www.huffingtonpost.com/2015/04/02/radio-bursts-alien-signals_n_6984870.html
[2] http://www.telegraph.co.uk/news/science/space/11357176/Mystery-alien-radio-signal-picked-up-in-space.html
