Christmas was magical. Certainly for me, almost by definition, since I expected to be dead or seriously dying by now. But everybody had a great time. Kim came over to help us celebrate. The kids made ravioli for Christmas Eve dinner, assuring one more generation knows and loves the quirky recipe that came in 1902 with the Italian side of my Mom’s family from the farming village of Pianozza in northern Italy. Christmas morning Molly made pancakes, sausage, and applesauce, dinner was a beautifully spiced pot roast. Awesome. Reminded me of the three-ring circus that the holidays were when I was growing up.
Winter holidays at the Pompton Lakes cottage were a mixed bag of traditions, improvisations, logistical nightmares, and general hilarity. The living room was smaller than the average bedroom in houses built in the 1980s. But into that room we crammed a Christmas tree (invariably the largest one my father could hide from my mother until time to set up), the only television, the only record player, all family and guests, plus drinks and food. There was an ancient German blown-glass ornament that my Dad’s father gave to my Mom. For some reason, she would hang it from the low ceiling entry to the dining room. And then, every time anybody produced a ball, a dart gun, or water pistol she would shriek “NOT NEAR THE GRAPES”! It became our favorite chant for the holidays. I wish I’d gotten a tattoo before my Mom died… .
Throughout the holiday season—which we stretched out to encompass my birthday on 12 January—we packed into the living room. Given small space and numerous relatives, we formalized a system of visits. Christmas Eve we went in to Union City, to the 27th Street row house my Mom grew up in. There, depending on the year, there could be the resident families, us, and other expats in from the suburbs, plus the next door neighbor (who still resided there some years ago when Molly and I visited the neighborhood). I would guess a typical Christmas Eve saw 2 dozen people cooking, arguing, conversing, drinking, and smoking. Essentially 100% of the adults were heavy smokers, and the airflow in a narrow city house was not particularly active. Sports were on TV in both main floor apartments (hard to believe they could cut one floor of a townhouse into two apartments), and alcohol flowed like…uh…alcohol. The Germans stayed away from the kitchen in favor of the Italians—we weren’t the slickest family in North Jersey, but when it came to food we weren’t idiots. Grandpa demanded we kids run his empty longnecks out into the stairwell and trade them for full, cool Knickerbockers. One of the cousins (still alive and retired in Florida) worked for an airline and received a smoked turkey as her annual bonus. This bird was eaten mostly as appetizer, along with a salad of shrimp and elbow macaroni in a mayonnaise dressing, followed by ravioli and then an unsmoked turkey, mashed potatoes, green beans, cranberry sauce, and gravy. People ate ravenously. Mostly because they wanted to get to the espresso and after dinner drinks. Debbie the Irish Setter—nobody ever explained how they ended up with an active sporting dog in a city apartment, especially since nobody in the family was particularly fond of dogs—hunted scraps all evening. Eventually, as the adults approached too-drunk-to-drive, we packed up presents and leftovers for the trip back out to Pompton.
Next morning, we did family presents and breakfast at home. Then we went out to my father’s family in Dumont and nearby Haworth. These visits started out rather small and quiet in a garden apartment until my Aunt Helen (Dad’s sister) had her 4 kids and they moved into a big house in Dumont a short walk from the Haworth house that Dad’s father still occupied. Then things achieved a fair portion of the craziness dealt with the evening before in Union City. In Dumont they had a roaring fireplace, color TV sets, and a large area of dining and sitting room decorated in pristine, bright white. WHAT WERE THEY THINKING??? Depending on how many of Uncle Tony’s relatives came out to visit, there would be anywhere from 7 to a dozen children running rampant. Carrying grape juice, coke, oily appetizers, etc. In a house decorated in pure bright white! Aunt Helen had the Zen of the holidays, though. She’d slurp a Manhattan, smoke cigarettes, and hope somebody else would pull and carve the turkey at suppertime. Her strategy worked great. We invariably had a great time, and after the two days of running parties, we kids were exhausted. I’m sure my parents were thoroughly hungover.
Everybody in our house was arc-welded to the education system. Both parents were teachers (except a number of years when my Mom was in business) and we were in school. So we all had the week off between Christmas and New Years. Dad was Department Head of English and Sociology, and was regular drinking buddies with 10 or 15 colleagues (including, for some reason, several defrocked priests. As a lapsed Catholic, Dad had an odd penchant for hiring same), all of whom, along with a few former students, stopped by to visit. Then my high school and later college friends, and then my sister’s, and then my brother’s, also came by. The teeny tiny kitchen produced snacks and appetizers like a James Beard catering operation.
Mom and Dad did a rotating New Year’s Eve party with other teachers. When they did it at our place, it required every square centimeter of open floor space to pack them all in. By the time I was in high school, my brother and sister and I served as caterers and waitstaff, since the kitchen was the only place left with room to breathe. I remember the year one teacher came without his wife, who sent him with huge trays of ham spread on toast that needed to be reheated in the oven. The guy was really proud of those canapés. Couldn’t talk about anything else. As we pulled them from the oven, I slipped and dumped one of the trays all over my shoes. We quickly swabbed down shoes, the floor, and the oven and dumped the evidence. Then we served the remaining toasts. The guy noticed instantly that we were missing half the toasts. We told him “they were so good, man, that we couldn’t help ourselves. We ate them while we were heating them up”. It is perhaps a measure of his alcohol consumption that he bought the story without a question.
And that last anecdote points the way to another rule I’ve had to add to my how-to book of life. It is simply this: “Roll With It”. When things happening are beyond your control, or have no easy fix, or maybe no fix at all, your best bet is to simply relax and let real life wash over and through you.
Of course, this new rule sits side-by-side with the other Zen acceptance aphorism, Live ‘em While You Got ‘em Because They Are Not Forever.
I have managed to learn a lot about myself as an outcome of my cancer and its treatment. Growing while dying, I am learning, is not only possible. It is necessary if I am going to survive for the maximum lifetime available. There is no sense trudging to death. I’d like to leave a better world behind me, maybe with just a little perspective arising from the debris of life associated with cancer.
So. I love you all. I miss you all. And I commend carefully managed acceptance of experience to you as one more tool to help keep your life running with the key in the ignition and a case of beer on the back seat. Rock and Roll, everyone!!!
PS--here's a photo from Beth of Christmas at the Pompton cottage:
Well, it’s been typical of the past couple of years. Saturday night I posted that chirpy, happy blog entry. Sunday night I was in the hospital with serious, dangerous pneumonia. This was a particularly difficult episode. Poor Cathy and the kids had just driven up from Atlanta after celebrating Colin’s graduation from Georgia Tech. The Emergency Room and hospital in general were backed up. We spent 14 hours in ER before getting a room. By that time I had thoroughly shit and pissed myself and had to be wiped down by morose technicians.
It took several days of high-power antibiotics to get the infection of both lungs under control. Then, out of the blue, my blood pressure spiked at stroke levels and I had to spend another day in hospital. Thursday they let me out, but only because Cathy is trained to administer the intravenous antibiotics. Which admittedly come with awesome technology. A little pressurized ball of meds screws into the port access (the “port” is the permanent needle embedded in a blood vessel at my heart. It’s a dangerous bit of infrastructure to fuck with, as any infectious organisms introduced are mainlined into heart and lungs). It empties itself automatically in about half an hour. Very simple, robust, and ingenious. Hopefully the week’s worth of biocides (plus an additional oral antibiotic) will keep me relatively healthy for a while. In any case, I’m finally home and getting warmed up for Christmas.
This is my time of year. With the fabulous Thanksgiving as a massively wonderful gift from all involved (thank you SO MUCH again everybody), Christmas is next. Of course, not only am I unable to do brick and mortar shopping, I was too sick right through the critical online ordering time. Basically, my gift to family and friends this year is pretty much confined to still being alive. Beth and Maggie made the Italian holiday bread, panettone-pan dulce, including the fussy task of candying the orange peel by hand. They did a hell of a job. Everyone who’s tasted it declares it phenomenal.
BTW, I use a grossly enriched version of the austere recipe my Mom recorded by following one of the Tanta’s (we called all the Aunties by the German descriptor, including the Italian ones responsible for the pannettone) around while she made it one year long ago. It goes something like this: mix 5 pounds of flour with 2 cups of sugar (preferably demerara, raw or if necessary light brown plus some white), salt, and yeast. Make a well. Break 10 eggs into the well. Heat about half a liter of milk and a pound of unsalted butter in the microwave. Being careful not to cook the eggs (maybe pour the milk and butter around the outside of the well), add the milk and butter. Mix and knead thoroughly. Note that this should be a soft but not sticky dough. You may need to add up to another half liter or so of milk. This can be warm, it doesn't need to be hot. Add the extra as early in the agglomeration process as possible to make its incorporation easier. The kneading is tedious and needs strong arms. Or you can do it 3 batches with a big-ass stand mixer. Let rise double in a warm spot covered with plastic wrap and towels. Cut home-candied orange peel (cook the peels of a couple of oranges, including the white pith, in a cup of water and a couple cups of sugar spiced with cinnamon, nutmeg, and allspice until soft) and dried cherries into bits. Knead the fruit in THOROUGHLY. Apportion the bread among about 10 pans (or flowerpots, or pie tins, or whatever you like). Rise double. Bake at 350 F until internal temperature reaches 200 F. Cool upside down on racks to maintain top crust. Wrap tightly when cool in foil and seal in ziplocs. Serve toasted with a load of unsalted butter.
With that said, I’m gonna be brief this week. You’re all busy, and I’m still very tired and weak from the hospital. I will give you a bit of my usual gratuitous and unnecessary advice, in keeping with the fact that every week I survive I feel a little wiser and much older. So: 1) touch somebody every day. Just reach out. You’ve got email, a cell phone, texting ability, social media. Don’t worry that they might not want to hear from you. Maybe they don’t. You’ll never know until you try. And the odds are, they will. And for god's sake don't worry about the "security" of your email. You're not Sony. North Korea is not trying to hack your gmail account. 2) Live ‘em while you got ‘em. They are absolutely, unequivocally NOT forever!
I love you. I thank you. I wish you a merry Christmas, a happy New Year, and a joyful Channukah.
2014. A year that reminded us of a couple of universal imperatives: 1 peace is a really good thing sociologically, environmentally, and economically, and 2 public health is a field of endeavor to which we should pay more…much more…attention.
OK. I hear your gears turning, attempting to winkle out [a British idiom based on the harvest of periwinkle snails from jetties and intertidal rocks, said snails are boiled and eaten hot with dipping sauces, a treat for visitors to the eternally chilly and windy UK coast, although David McCallum on NCIS contends his parents had to hold him down and physically force the little snails down his gullet] just why a sort of mediocre ecologist with a spotty academic record and compulsive interest in over turning rocks, especially in the intertidal zone of the nearest estuary, should be pontificating on matters of such weighty importance.
The answer, of course, is that said ecologist is also driven to compulsive pontification. And his ongoing trench war with various cancers gives him, he believes, a license to pontificate, sort of equivalent to Legislative approval of the Executive’s power to wage war. What this means in the short haul, of course, is that you are stuck with my pontificatory (actual word?) musings regarding the interface of science and sociology.
So, with licensure (actual word?) established, let’s rock!
But before we get to the larger, more important world, let’s do a quick review of my private, as opposed to public, health. In general, here inside my cancer-stricken anatomy, things aren’t too bad. I still have plenty of pain, and lack energy and ability to get around without stumbling and stopping every half dozen slow paces to catch my breath. On the other hand, I DO manage to catch my breath. This is a sign that the chemotherapy continues to function as intended. The tumor tissue in my lungs has been beaten back sufficiently that I am not wheezing, accumulating fluids, or struggling to get enough oxygen for my physiology to function. These are all good signs.
On the other other hand (see paragraph immediately about for initial “other”), all is not roses and chocolate dipped cherries. I’m having trouble generating the energy needed to do even the minimalist Christmas shopping I need to do (and which I love to do, the problem is that physically I just have trouble keeping functional long enough to get it done. On the other other other hand (I promise, that’s the last one of these sick little grammar jokes I’ll subject you to), Beth and Maggie have been here all week babysitting me while Cathy and the kids went to Atlanta to watch Colin graduate. In fact, due to Cathy’s astute attention and Beth’s and Maggie’s computer skills, I did get to watch the JumboTron pic of Colin receiving his diploma. Presumably. At Rutgers, we got empty tubes which allowed the administration to hold up our actual graduation until we paid our library and campus parking fines (I SWEAR). Actually, I skipped my mid-term graduation, so it wasn’t an issue for me. Pretty sure I have the diploma somewhere. Which is odd, because I’m also pretty sure I carried library and campus parking fines. Oh well. Institutions have their own pace and personality. Rutgers was slow and sloppy. Which is why it was such a perfect fit for me!
Anyway. Let’s give a quick once-over to matters of public health and global politics. Based on stories culled from this week’s Washington Post (print edition), we find:
• Ebola, in its vicious swath carved across the chronically impoverished landscapes of West Africa, caused the collapse of the fragile health infrastructure (such as it was) in the affected nations. This means that the thousands being killed by Ebola each multiplied its impact such that malaria, a true scourge in the region, plus sleeping sickness, dengue fever, schistosomiasis, and other massive health threats were released from any ability of the medical system to constrain their impacts. West Africa is now officially more of a mess than it was prior to the Ebola outbreak, which is rather stunning giving how fucked up said health care systems were in the first place
• There is a real crisis brewing in the global microbiological fauna. Drug-resistant microbes are universally present, and the proportion of the microbial ecosystem that is drug resistant increases constantly. A British-sponsored report by Rand and KPMG estimates 2 million drug-resistant cases and 23,000 deaths per year in the U.S. alone. Projecting that estimate across nations including China, India, Indonesia, Australia, and other populous places that need big-time food inputs, where such inputs are generated with the assistance of prophylactic antibiotics is a frightening exercise. Our children are going to live in a world where an infection is a very dangerous thing. A quick rinse and a band-aid are not going to be enough. And current research suggests that we can’t drug our way out of this. Antibiotic resistance is very difficult to constrain. At some point in the coming decades, this will be an issue of life-and-death importance.
• Finally, for the lighter side of things, let’s look at world peace. China, which finds the Nobel Peace Prize to be bigoted against Chinese patriots, issues an alternative, the Confucius Peace Prize. To compound the comedy, the winner this year is Fidel Castro! Man, sometimes you can’t make stuff up to compete with the real world.
Well, that’s a wrap for this week, everybody. I’m still alive, still marginally functional, still love you all and I feel your thoughts on my behalf. Hopefully this week I’ll be able to complete some rudimentary Christmas shopping—we’ll see. Check back to this time and space next week for your update.
And remember. Use ‘em while you got ‘em. Because they are definitely not forever. My love to each and every one of you!!!
Ah, the end of the year. Time for comforting, oddball, humorous, enumeration and commentary on twelve month’s worth of human endeavor. Been a strange and busy year here on earth, under the watchful eye of Santa and his elven spies determining who is “good” and who is not.
This year, we (that is, “we” as society—although it’s difficult to see a single “society” in a social structure that ranges from gleeful murder of relatives for sport in the impoverished Muslim Middle East to massive investment in the structure of subatomic particles in wealthy Europe, although the shocking racial disparities plaguing the U.S. revealed by recent reporting regarding murder and incarceration of unarmed civilians on the streets should give us some pause) asked Questions—big questions, maybe the biggest and most important ever asked. Do comets, billions of year-old remnants of the formation of the solar system, carry the chemistry of life? Can we, technically, make our way to Mars, most likely sister planet to earth in terms of potential for supporting or having supported life? What the hell is Pluto, a planet-ish object at the outer edge of the solar system (seems like something with the potential for a Star Trek/Star Wars plot involving a fake planet watching over the colony seeded on the third stone from the sun). Such questions are good for those of us with serious individual problems, like terminal illness. It gives us some perspective for our life and death. If we’ve left a fingerprint on things, it means we don’t “die” when our body does. Our contributions continue, we’re part of a human race moving forward. We’re more than the mass of carbon and energy comprising our corpus.
But let’s start at the small end of things. This week has been a strange one here in Cancer Land (trademark, copyright). I spent Monday having a chemotherapy infusion. Felt ok afterward—a good sign, since I really like to stay out of the hospital as much as possible. My red blood cell count was nominally low, so the docs and nurses had me back on Thursday for a couple units of whole blood. Which, for some reason, collapsed the copacetic comfort I’d been feeling all week. Thursday night I spent nauseous and vomiting. Friday I felt like hell. The nurse arrived Friday evening to sort out access to my circulatory system, and made some suggestions for improving my physical comfort. Finally Friday night I got some good sleep, and today, Saturday, I’m feeling better. Should be able to eat and drink today, important functions for a declining physiology.
At the start of this year, I didn’t expect to live to see the end of it. So it’s a tribute to the medical system that bought me another holiday season (at what I’m sure was an extravagant cost financially and technologically). For all the hassle, pain, drugs, and emotional turmoil, I’m still glad to be here. So that’s a plus. A little more time to watch my kids grow up, do a little writing, get some cut paper art pieces done (I’m working on a nice one as we “speak”). In other words, a little more life before things close out when the cancer finally overcomes the best medical responses available.
So, back to the big picture. Of course, it only took about 15 minutes for someone to spot a “large monastery-like building” on the surface of the comet when the photos started to come back (http://au.ibtimes.com/articles/575052/20141206/rosetta-comet-67p-alien-building-ufo-enthusiast.htm). Personally, it seems like an odd place to locate a monastery, but not a whole hell of a lot odder (more odd?) than the montane highlands of Tibet, which are ripe (rife?) with monasteries. According to the LA Times article about the Pluto probe (http://www.latimes.com/science/sciencenow/la-sci-sn-pluto-new-horizons-hibernation-nasa-20141205-story.html) the resolution of its cameras will allow things like monasteries to be imaged. Which is good. Now we can tell if quirky religious institutions are universal or not. Seems like an important question, no?
Or at least an interesting one. A final note regarding things here on earth. I was reminded today by good friends visiting Miami to kick off the holidays that a Cuban seafood place called Malaga, located near the intersection of 8th and 8th (740 SW 8th Street, I believe) has been excellent every time I’ve been there. The Sangria is fresh and tart, and they’ll bring the snapper to your table for approval before frying it for you with fragrant spices. Of course, the last time I was there personally was in…probably…oh, say, 1985. But a quick check of the reviews under “Cuban Seafood” in local papers and web sites suggest that their standards have not slipped.
This coming week, Cathy, Molly and Jesse converge on Atlanta for Colin’s graduation from Georgia Tech. Beth and Maggie will be coming out from California to baby sit me, with initial assistance from Jesse who will hang around a couple extra days due to his back-breaking work and school schedule. Personally, I’ll have my butt parked in my hospital style bed, doing some internet shopping, reading and writing, art work, etc. Have a great kick-off to the holidays, everyone. Family, friends, food, drink and ritual—those are the truly important things in life. Take it from someone who’s learning the hard way. I love you all. Talk to you next week!
Oh yeah. PS: Live 'em while you got 'em. Because they are NOT forever. Far from being useless, day-to-day celebration is good for the soul. And orchestration of such celebration is a critically important component of the holidays in which we ground much of our yearly investment of time, money, energy, humor, and love. So rock on all. It's that time of year again!
Thanksgiving’s over, we’re starting that slide to the winter holidays, and I’m still alive. All of which is, nominally at least, a replay of this same time the past few years. Except. It was just before Thanksgiving two years ago that we discovered my cancer had beaten all the therapeutic ammunition we threw at it. It was right around this time that I went back to the hospital to have my tongue excised, and had a prescription for medical leeches (which come from the pharmacy in cute little harnesses. If I hadn’t been so devastated by the surgery and cancer recurrence I would have put some in little reindeer costumes. Opportunity missed—my bad), and had the entire lymphatic system cut from my throat and chest. In short, I was a mess, physically and psychologically.
Thanksgiving bailed me out of my “shitI’vegotcancerandI’mgonnadie” funk that year. I had a fabulous time, and an enormously important reminder of why life, whatever we have of it, is so beautiful. Got me through a whole year of physiology wars.
THIS year, we know the cancer not only recurred, it prevailed. It’s a bit of a surprise, and a tribute to the medical team at Greater Baltimore Medical Center, that I am not dead. Although I do LOOK dead (as Pete Townsend said of Keith Moon at the first show of their first Quadrophenia tour in San Francisco). I must note at this point that I tried to warn all Thanksgiving guests that I look horrific. Congratulations are due to all, as nobody choked, gagged, or recoiled visibly. In fact, Thanksgiving this year was, because of my “delicate condition” coupled to the love and friendship of all who attended, contributed, wished they could attend, or simply sent heartfelt greetings, even more life-affirming and fantastic than usual. It was, without doubt, The Best Thanksgiving Ever.
Reality will soon rear its ugly head, however. I will be dead in the not-too-remote future. Making this the Last Thanksgiving Ever for me. With that said, I would like to recount a few of the wonderful components that combined to make this 2014 Thanksgiving such an awesome party. Consider:
• The Bosbells took “longest trip” honors for getting here from the mountainous suburbs of Denver AND provided bagels that were a big hit throughout the proceedings
• A consortium of old friends and colleagues shipped in a selection of movie DVDs and music CDs, none of which were duplicates of titles already available in-house (how awesome is THAT in a place with nearly 10,000 audio CDs at least a couple hundred DVDs?), a bottle of Willamette Valley pinot noir that was like a silky, 15% alcohol, cherry-and-chocolate flavored syrup (in other words, absolutely frickin’ FANTASTIC), a true pastrymaker’s pie, and an outstanding, full flavored spiral-sliced ham that was voted “Best Main Dish” by a wide margin of guests
• The Y family contributed a fantastic free range turkey with massive quantity of meat on its frame. Then, when it became clear that I could not stand up long enough to de-bone said turkey, Dr. Y stepped in and, like a guest surgeon on an early episode of MASH, slipped the bones of that bad boy out and left the full-flavored meat and skin to stuff for the Maghreb style turkey, and Ms. J made sure we had an outstanding hand-crafted pumpkin pie for that classic Thanksgiving flavor
• The group as a whole put together a bar’s worth of high-end wines and beers, plus Dr. Y stepped in and replaced the bottle of Chinese Shit we emptied last year. I note that it is apparent that our group is aging, as several people reported this bottle of Gujingongjo was “not as bad as the other stuff”, a statement that can only be attributed to age-battered and generally dysfunctional taste buds
• The L family, who, along with Bob and G (who also came, bearing a classic and high-powered pecan pie) had strayed elsewhere in recent years, provided delicious frickin’ fried oysters from a really cool restaurant quality deep fat fryer, hand-smoked fish still being foraged by Jesse on his way to the night shift, plus, as a bonus, outstanding jambalaya that was slurped by the ravenous crowd in a frenzy that resembled nothing so much as a tour group of anorexic supermodels in a high-end Swiss chocolate shop
• Ms. M supplied smoked salmon, supplementing that assembled into cute cream cheese and pastry rolls, in addition to a fabulous dessert pie
• Dr. D M provided our south of the Mason Dixon Line cred with a luscious collard greens casserole and a life-saving, hangover-fighting breakfast casserole
• Ms. M of local provenance came bearing pumpkin bread, while Mr. E cracked a high-end bottle of bourbon which latter quickly found out this is NOT the kind of crowd good whiskey should mess with
• The kid’s Aunt V provided cranberry sauce and an innovative and refreshing lemon trifle
• Ms. L from the American Heartland shipped in a gorgeous bouquet that served perfectly as a centerpiece
• Frank J. from my Jurassic past made a four-hours-each-way drive to visit as the weekend wound down just to wish us a happy holiday and get us started thinking about Christmas and the New Year
• If I’ve forgotten anything or anyone above, please slap me around and I’ll edit this column in real time. I’m so grateful to all of you, so thankful, that I could easily have missed something in my enthusiasm. As usual, I need adult supervision (sad as it is for a 61 year-old!).
Many more thanks are due to the group for taking care of the cooking, none of which I could do as I was largely confined to my hospital-style bed, and for operating a rolling hygiene operation that kept dishes and counters clean, tables clear, and the other logistics operations that need doing for a party of 30.
And finally, this. I noticed a number of you fighting back tears as we said our goodbyes. Clearly you looked me over and did the rough arithmetic regarding my appearance and the next time we might see each other. For most of us, I’m gonna lose that race, and I’ll be missing in action. In any case, I understand the sentiment, and I desperately wish I wasn’t causing you this pain. But there are some critically important things you need to know.
I have lived a wonderfully rich and warm life. And collectively, much of said richness and warmth came directly from you, the readers of this column and the Thanksgiving crowd. You gave me opportunities, did science and natural history with me, made me laugh, helped me out, and in general made my life the funny, productive, complicated, joyful time it has been. For all that and more, I am eternally grateful. And I’m tearing up now, which seems more appropriate to me. I love you all and I thank you all. I’ll fight my way to the end, motivated by the love, friendship, perspective, humor, and learning you all have given me. I hope to die with a smile on my face, but it is possible I’ll lose my grip and will cry in any case. Either way, just know that I am thinking of you all the way from here to the end.
A small selection of Thanksgiving photos follows below. Remember in most browsers you can enlarge by clicking or double-clicking each photo. I owe many of you and especially several regular readers of this column email replies. I’ll get to those this evening and/or tomorrow. Tomorrow I go in for chemotherapy. I’m hoping massively that I don’t end up barfing my guts out, because it’s clear the chemo drugs are working, keeping me alive and breathing.
Thank you, everyone. I love you!!!
Having a serious, progressive, terminal illness, I am starting to realize after years vested in same, comes with an odd affliction I call “Normality Creep”. Normality Creep is a subconscious survival mechanism in which the patient (me) accepts, even embraces, more and more discomfort and dysfunctionality in life as the disease progresses and time passes. Examples from my own case include simple speech. When the medical team was preparing the first couple of treatment plans, I told them emphatically that losing the ability to talk was a deal-breaker. I have made my living via public speaking and teaching. It is one of the very few innate skills I possess…ed. I could not imagine life without speaking, and instructed the doctors to withhold treatment if I was going to lose the ability to talk. I could survive without speaking, but my quality of life would suck and I didn’t want to go down that road.
Eventually the doctors realized they were not going to be able to save my tongue or provide access to my larynx. This despite the repeated application of medical leeches (attached to cute little harnesses in the pharmacy) in an attempt to save a thigh-muscle tongue graft. I was devastated. But was no longer willing to give up on that basis. I got various writing boards and learned to muddle my way through. My “new normal” had passed a hard threshold, and I just let it go.
Normality Creep simply demonstrates how complex life and dying are. Physically and psychologically, we learn to accept and live with bizarre contretemps as we stumble through life.
Another abnormality that slipped across the threshold to normality is a persistent, irritating, sometimes painful sore on the right hand side of my tracheostomy tube. Where the tube infrastructure rubs against my throat, the skin degrades and I get a scabby sore that often leaks blood and/or lymph. On the left side, after about a year, the sore seems to have healed permanently. On the right side, it is persistent and continues to rebuild itself whenever I dress it and try to get it under control. I finally asked oncologist Dr. T about this earlier in the week. She said casually “Oh, I think there’s tumor tissue there. You’ll probably not be able to get rid of that blob of inflammation, as it seems to be driven by malignancy.”
Mind you, this didn’t seem like a casual matter to me. After all, I’m used to dealing with tumors as abstract entities buried deep in my anatomy, where they can sometimes be visualized via remote sensing technology, but generally represent an unseen enemy sniping at my health from hidden places. Sort of like Keanu Reeve’s Constantine, when Satan reaches into his lungs and extracts a large, black tumor from each. Or like high school health class, where films of black and goopy dissected tumors are displayed in an effort to reduce smoking rates among teenagers.
Thinking I had a unique opportunity to actually see living tumor tissue, I took a forceps and extracted a little chunk of the sore on the right of my throat. Disappointingly, it didn’t look different from every other scabrous sore I’ve ever had. So much for amateur science!
This did, however, raise the issue of life hiding in plain sight. After all, for years now, I’ve been looking at a hijacked chunk of what used to be me, now taken over by the cancer and so a separate, and distinctly unfriendly, blob of living material. Where else might we find the equivalent of Sherlock Holmes’ purloined letter, sitting on a desk top with dozens of other letters and so not coming to the bad guy’s attention until a new plot device was needed?
I immediately logged onto the web and started searching comet pictures for little elf-like creatures waving as the lander bounced down to the surface. Alas, no readily visible “hidden life” there. But. Comets have generally been around since the solar system formed, on the order of 4 or 5 billion years ago. And, as we know from dust samples recovered a couple years ago, they contain amino acids! And why does this merit the exclamation point? Because it means that we don’t have to posit the appearance of life from non-life on a planet-by-planet basis. If amino acids—the bricks and mortar of proteins that living things are made of—are chemical artifacts of the formation of the solar system, we don’t need a lengthy time for life and its chemical residues to develop. They’re ubiquitous. And ancient. Life is part of the fabric of the universe, if comets do indeed carry loads of amino acids.
So, my cancer “hiding” on the skin of my throat is following a 13 billion year old rule book for populating the universe with life. For some reason this comforts me in my illness. The atoms of which I’m comprised were forged in supernovae billions of years ago. When I die, those atoms aren’t going anywhere. They’re simply going to be re-incorporated into the warp and weft (correct usage??) of universal physics, chemistry and biology. I will no longer be “me”, but I’ll be part of many other things, living and non-living, across the universe (hmm….make a good song, you know?).
And that, as Gandalf makes it, “is a comforting thought”. So…Dig a Pony, everybody. To those of you helping to celebrate my Last Thanksgiving, by being here to share the moment or sending stuff to make that moment easy AND delicious, my eternal gratitude. I’ll give you the Thanksgiving Report next blog entry. Then, that Monday, I go back for more chemotherapy. I’ll report on THAT in the following blog entry. Lots to do in this busy time of year. Except for me. “Doing” in my case means parking my butt in my hospital-style bed and watching the world happen around me. Really, if it wasn’t for the pain and discomfort and inability to sip espresso, this could be a quite pleasant way to wind down my life. But, unfortunately, I gotta keep battling my runaway physiology. Unless they find some fantastic cancer drugs in the ice and dust of comets…. .
Last week, we touched on the primary therapeutic difficulty with cancer—distinguishing destructive “otherness” from happy and healthy “wholeness”. This dichotomy, of course, is the source of my present difficulties, which consist primarily of battling the horrific “side effects” of chemotherapy. The chemo drugs degrade cellular substructures. If they could be focused specifically on tumor tissue in my lungs and pleural membranes (the latter are sort of a sack inside which the lungs function, it is important that it be clear and elastic to accommodate healthy breathing), I wouldn’t have the struggle with gastrointestinal symptoms like nausea, vomiting, and dehydration. Unfortunately, in practice, the taxol drugs (I’ve had several different ones in the course of 3 flights of chemotherapy, I think the current one is “docetaxel,” synthesized during efforts to increase the efficacy of the original pine-bark derived taxol) gum up cellular replication throughout the body. The thing that makes them useful in cancer therapy is that malignant cells have higher metabolic rates than “normal” cells. Meaning that you can hammer the whole system (that is, the patient, or, in this case, “me”) to near death with the drugs and find tumor tissue differentially affected. As long as you don’t kill the patient with the drugs. Based on my experience (especially the 911 ambulance rescue incident), I’d say we’re working pretty damned close to that lethality threshold.
But let’s not go there yet. Let’s revisit momentarily a place we’ve been several times before in this weblog: the moist, densely forested landscape of Europe after the last ice age.
Human beings are obviously among the most adaptable species on earth. We occupy all landscapes, from desert to permanently flooded tropical waterways and wetlands. And when we first occupy a “new” landscape, we don’t just slip in overnight, keep quiet, and commune with the local flora and fauna. Hell no. We reconfigure things (by “things”, I mean structural and functional parameters of the ecosystem, stuff like biodiversity, soils, water regime, carbon and nutrient fluxes, topography, geology, and a host of others) to our liking, and settle in for the long haul.
One key ecosystem parameter that’s given us trouble from our earliest evolutionary history to the present day is the presence of “others”. When Homo sapiens first wandered north from Africa 50,000 years ago, the “new lands” they found were already occupied by H. neanderthalis. Neanderthal people, as we now know, were smart, fire-building, tool-using people. They had been in place for hundreds of thousands of years. They were not easy to displace from what were then essentially their homelands.
So we (that’s the Royal We as in “we Homo sapiens”), didn’t bother to try to get rid of them, at least at first. Instead, we consorted (good word, no?). We had our hosts clean out the spare cavern at the back of the cave and convinced them to let us shack up. We interbred, to the point where H. sapiens carried a fair sampling of Neanderthal genes, and vice versa. Sweetness and Light prevailed.
For a while, at least. Newly published genetic findings from a 37,000 year old H. sapiens body found in Russia [1] suggest something ominous (well, ominous to ME, anyway. The article at [1] was obviously written by someone with a solid reputation to maintain and unwillingness to speculate, whereas I have no reputation and zero credentials to protect and so am free to speculate away like Erich von Daniken on a mescal binge) suggest that Cro magnan (pre-modern H. sapiens) and Neanderthals went on something of a gene-exchange orgy. This period of inter-species breeding (which, BTW, is problematic for the definition of species in the hominids, since the threshold representing different species is supposedly a LACK of interbreeding) was short and confined to the first few thousands of years after Cro magnan moved into Neanderthal neighborhoods. Soon after these early encounters, interbreeding ceased. The load of Neanderthal genes in Cro magnan people was fixed early and did not change afterwards—we stopped inter breeding [2]. From that point forward, Neanderthals occupied increasingly marginal and isolated locations. Neanderthal and modern humans shared the landscape for 10s of 1000s of years, but apparently cordial neighborliness was no longer a feature of their relationship. Eventually, Neanderthal people went extinct and H. sapiens took over the show. And the rest, as they say, is history. Or, more technically, pre-history. Or whatever. The point is, Neanderthals were no longer our buddies. And it seems likely that, once the family feud was underway, Neanderthal people were in deep shit. Nothing has more potential for biological devastation than modern humans with an irrational grudge and access to weapons.
Which brings us, perforce (I have absolutely no idea what “perforce” means or how to use it. This just seems like a place the word might have been inserted in a ponderous 18th century manuscript), to face the ominous implications of our interspecies relationship to Neanderthal people.
Basically, we decided Neanderthals had to go and that we were the instrument of their destruction. We drove them to marginal habitats and went to war. Possibly we put them on the menu. In any case, we were no longer willing to engage peacefully with the original “others” whose lands we were rapidly expropriating. We were efficient, too. In only a few 10s of 1000s of years, Neanderthal were down for the count and not getting off the canvas. It was all over but the celebrating. Perhaps something like the Ewok’s “hey, we just saved the universe, let’s drink ourselves into a stupor and party hearty” party.
It really doesn’t matter. What scares me about this scenario is the present turbulent geography of human beings on earth. Wars between “others” are ongoing and reshaping the earth. From Korea to Kashmir to the whole of Africa to the slums of Miami and Los Angeles, to Ferguson Missouri, people “not like the others” are battling each other. It’s making for dangerous and difficult times. Is it possible that our inherent dislike of “others” is genetically ingrained (or is it “engrained”? I have no real idea. But you get the point), and was fixed in our genome during the “Neanderthal Wars”? Because if so, keeping civil constraints on Vladimir Putin and his ilk (love that word), from tribal war lords in central Africa to tribal war lords in the Middle East to tribal warlords in _____ , take your pick, is a much more difficult and biologically-driven task than we’ve acknowledged to this point. If there is an inherent human tendency to eliminate “others”, then the dark side of the relationships between colonizers and native peoples (think “Trail of Tears” here) is likely to remain dark. Which clashes big-time with modern technological capabilities to travel and communicate globally and easily. It may be 10s of 1000s of years before we straighten this out. And the “straightening” process may be icky in the pools-of-blood, killing fields, mass grave sense. Not to repeat myself. But: icky.
Do you know what the difference is between Shiite Islam and Sunni Islam? Shiites believe that when The Prophet Mohammed died, his line of succession should have accrued within his family (and specifically his uncle Hussein, martyred at the Battle of Karbala). Sunnis (“Sunna” means “community” or “in group”, as in “not like the others”) believe succession rightly passed to The Prophet’s closest friends and advisors. Leaving us with a centuries old example of the power of “otherness” to provoke really stupid, counterproductive human behavior.
Which brings us full circle back to the ultimate test of individual “otherness”, cancer and my present condition. At the moment, my physiology is working pretty well. Having put the last round of chemotherapy behind me by more than a week, I feel pretty good. Breathing is good and clear. Except for sudden leakages of mass volumes of mucous several times a day (which I try to stay ahead of by ingesting mass quantities of Benadryl), I’m really not in bad shape. We seem to have gotten a good balance between “otherness” and “oneness” in my medicines.
Basically, I do not feel at the moment like I’m dying. I feel like an invalid, but one whose quality-of-life is more than sufficient to justify hanging around and fighting back against both the disease and its treatments. My primary difficulty now is ingesting sufficient calories per day so I don’t slowly starve to death. Haven’t mastered this one—I am slowly starving to death. But, I’m working on it.
I will provide one important disclaimer. I look absolutely horrific. I am a wizened, hairless, misshapen, frighteningly changed person. I look, basically, like a guy who has died after a long battle with cancer. I do not look like Dave. I am in any case a dead man walking (and not walking too far—my leg muscles cramp after 50 meters or so). For those of you coming to visit and to help celebrate my Last Thanksgiving, just be prepared. I look shockingly bad.
However. I’m still in love with life, with music, art, photography, and, most importantly, with you, my friends and family. Just try not to gag when you first see me!
References
[1] http://www.reuters.com/article/2014/11/06/us-science-genome-idUSKBN0IQ2QK20141106
[2] http://theconversation.com/ancient-dna-sheds-light-on-the-origin-of-europeans-33907
OK, sports fans, it’s time to ante up and put up the date and time for the shitrain to fall. In other words, I had chemotherapy yesterday. This was after a week off to get two units of blood and give my platelets time to recover on their own. Yesterday they did all they could proactively to try to keep me out of the ER following this round of chemo. Short term antinauseal. Long term antinauseal. Steroids, just because steroids help fix the symptoms of pretty much anything. Rebalanced my electrolytes. Then they dropped the green flag and stomped on the accelerator—in went the nasty chemicals synthesized after discovering that a number of molecules found in the bark of free-growing evergreen trees had anti-cancer activity. So it’s off to the races here at noonish on Saturday.
But before we go there let’s tackle a technical issue that’s been bothering a number of my astute and intelligent readers.
I’ve been taking something of a pounding from several smart readers challenging my contention that alcohol “caused” my cancers. In general, these people are correct—with very few exceptions, it is impossible to attribute a specific cancer to a specific exposure.
Perhaps I should explain myself.
“Conventional” poisons are the kind of thing you get in television crime drama, or from World War One movies. Cyanide, chlorine gas, mercury, lead, botulinum toxin, etc. These compounds function on a rigorous “dose-response” basis. That is, the more of the poison you ingest (or are otherwise exposed) the sicker you get, until you reach a level that kills you—the latter being called “lethal dose”. Like all things in the physical world, the response of a body to a specified dose of poison varies. It differs among different species of organism, so understanding the toxicity profile of these poisons requires a separate dose-response curve for each species. Toxicity also varies with a variety of more-or-less random variables—a long list of things that can be discovered and evaluated scientifically (timing, age, simultaneous exposure to multiple compounds, etc.). It also varies on a random basis—the “lethal dose 50” (LD50) is technobabble for the concentration of chemical that kills 50% of the organisms exposed. There is some randomness in this number—it varies slightly experiment-by-experiment. But, in general, the random variability in effect of conventional poisons is low. If you give 100 mice an LD50, you have damn near a spot-on likelihood that 50 of them will die. A few less, perhaps, if their physiology is randomly on the “good” side, a few more if they show up on the “bad” side. But this variation is relatively low.
Now, certain “non-conventional” poisons operate differently. The mechanics of toxins whose primary response to dose is cancer are particularly distinctive. In these compounds, if you remember back a couple years of this blog, we discussed how complicated a chain of physical, physiological, biochemical, and immune processes yields (or allows) cancer. This complex of events multiplies uncertainties at every phase. In addition, many, many things have a finite chance of chambering the round that leads to the target that triggers cancer. Bruce Ames, a government scientist is California is a pioneer in this field. He has documented the overwhelming abundance of foods, drinks, and incidental items (soil and airborne chemicals, primarily) that cause cancer “naturally”. The bottom line is that about a third of human beings develop lethal cancer(s) during their lifetime. According to Ames (and many other scientists who manage to be technically objective in this most acrimoniously subjective field) cancer is a damn near inevitable public health phenomenon, primarily because of cancer-causing substances in the natural world.
And relatively few cancer cases can be directly attributed to specific doses of specific chemical compounds. In other words, industrial chemicals in the environment are responsible for very few malignancies. Estimating the likelihood of contracting cancer in a manner analogous to that for “conventional” toxins is somewhat different. The dose-response curve is potentially more relevant to individuals from the exposed population (BTW, this runs counter to the convential heuristic shorthand that holds that conventional toxicity is an individual problem, and that cancer accrues only to populations. As you will see in the following paragraphs, I am taking a different approach to this, one that discerns individual impact of otherwise collectively measured intoxication). Thus a cancer that has an LF50 (likelihood of 50% contraction) for a population means that you, one of the potential victims, have about a 50% chance of affliction with whatever form of cancer can be caused by the methylethyldeath to which you have been exposured. That is why every new doctor I see spouts the first question: “how long were you a smoker”? They are consistently shocked to learn that I never smoked. This is because the dose-response curve for tongue and oral glands (parotid, in my case) is severe—if you smoke, you have a very high probability of getting these specific cancers.
The doc’s second question, then, is “were you a drinker”? Again, beverage alcohol (ethyl alcohol) has steep dose-response profile. Every time you consume alcohol, you get closer to that 50% likelihood. I am scrupulously honest with the doctors. I explain that I drank for about 40 years, and over 20 of those years, I drank the alcohol equivalent of more than a liter or wine per day. This is a massive dose of a highly carcinogenic chemical. The odds are very high (although the effect remains a probability the probability is very high) that those years of extraordinarily massive drinking contributed massively to my cancer, swamping other sources of carcinogen exposure (see Ames’ recent public research demonstrating the carcinogenicity of such important foodstuffs as broccoli, peanut butter, potatoes, et al. Just punch Ames into any browser to see complete lists in various publications).
What this means (and my apologies for dragging you through all this technocrap), is that I cannot, with 100% certainty, attribute my cancer to alcohol. But there is a very high probability, based on the inherently intense carcinogenicity of ethanol and my other life style choices. Some of the latter are positive (carcinogenic): exposure to the second hand smoke of my parent’s heavy smoking (although it is worth recalling that the likelihood that second hand smoke is carcinogenic, it is only weakly so), consumption of fish, frogs and turtles from local contaminated waterways, use of and exposure to industrial solvents and preservatives in laboratories, etc. Others are negative—never smoked myself, worked in gloves as often as possible, ate very little peanut butter, again etc. In addition, I spent years self-medicating various infections around my wisdom teeth, using high-alcohol mouthwashes.
The net outcome of my lifelong exposure to beverage alcohol buries the anti-cancer lifestyle choices I made (an aspirin a day, periods of intense exercise, cautious use of pesticides, and more).
I can state, with a high probability, that alcohol consumption contributed big-time to my present condition. It’s not the sole source, and it’s possible (although unlikely, given the other aspects of my life) that it’s not a “cause” at all.
So my read (and that of most of my doctors) is that alcohol was one of, if not necessarily the only, finger squeezing the trigger on the chain of physiological events that has left me terminally ill.
Which circles us all the way back up to paragraph 1 above: my health and ongoing treatment. So far, now about 20 hours since they dripped in the therapeutic toxins, and I’m doing ok. No nausea, no vomiting, no internal bleeding. But that’s not unusual. Generally, the shitrain holds off until Sunday following a Friday round of chemotherapy. So tomorrow, by early afternoon, I should have a feel for just how bad it’s going to be.
Either way, next week’s chapter in this serialized e book will give you the update. If it’s from the hospital, you’ll know that our defense collapsed, allowing the savage chemo drugs to once again hammer my body into a ¾ dead roadkill. If it’s from home, and all chirpy and optimistic, you’ll know that we finally got the balance of antinauseals in the chemo cocktail and continuing home administration of antinauseals, pain killers, and now i.v. infusion of hydration fluids to do their collective jobs. Under these circumstances, I may gain a few months of productive, fun, relaxed life until the inevitable end not much after that.
No way to tell at this point. I would request that all of you think about me for at least a few minutes to tomorrow. As you know, I’m personally not attuned to formal, join-up religion, so can’t pray myself. This doesn’t mean I don’t think, in a pagan/animist sense, that interpersonal action-at-distance has value. As does the collective love among friends and families. So I’ll be attuned to the waves of good wishes as they come in. And I’ll be thinking of all of you, the friends and family I’ll leave behind when the tumors chamber that last round and fire away. I love you all. And I admonish you to use, actively and positively, the time you have to your credit. Because you need to use ‘em while you got ‘em. They are NOT forever!
The thing about cancer…well, one of the many things about cancer…is that it is not an attack on your physiology by outside forces. With few and rare exceptions, cancers are YOU, and the medical battles amount to a civil war with your own cellular and organismal functions.
This is problematic physically and psychologically. The physical problem, of course, is that cancer-fighting therapies have to be effective against your own body and your own bodily functions. You’re not defending against outside interloping microbes, you are battling a runaway version of YOU.
This is an intricate technical challenge, demanding recognition and destruction of “bad you” in a body that is otherwise “good you”. And that bad you doesn’t differ greatly from the good you. The delta between bad and good, in this case, is too small to provide an easy way out. In many cancers, the disease manifests via alterations of very few genes, or the biochemical consequences of very few altered molecular pathways. Basically, to stop cancer, you have to stop appropriate parts of YOU. The most brutal analogy is probably limb amputation as a life-saving medical response during the civil war. Experience quickly demonstrated that a minie ball or even a spherical musket projectile penetrating a thigh and dragging filthy clothing fibers and matted gunk from the skin surface deep into the muscles yielded inevitable, fatal gangrene. So surgeons routinely treated such wounds by amputation. On the assumption that the victim would rather be alive and missing a leg than spending several weeks of increasingly painful bodily wreckage leading directly, if too slowly, to the grave.
We really haven’t progressed very far from mid 1800s therapy here in the 2000 and teens. Thus first we destroyed part of my tongue and my entire right parotid gland. Then we hacked out the rest of my tongue and butchered my palate. Then we flayed my torso and dissected out my entire lymphatic system north of my tummy.
And all that surgery? Still not enough. Now we are working on destroying the squamous cells lining my lungs, hoping to slow my forced march to death.
Sigh. It’s a rough road to ride. And yet. The drastic chemotherapy is actually working. I can take full, clear breaths, deep into my lungs, where a few months ago I cold only wheeze in and out a small portion of my lung capacity. I’m building enough energy to walk…well, shuffle…a few hundred meters every day. Which I have to do, because otherwise the string of 24 hour days not leaving the hospital-style bed in front of the TV is making my leg muscles so weak they cramp on the way to the toilet.
This week just passed continues the holding pattern my treatment has been in for a while. First, we met with oncologist Dr. T’s assistant Doc, who helped re-sort my pharmaceuticals and pass on the thought that if the chemotherapy really is working palpably (appropriate usage?), we might consider continuing beyond the originally prescribed 5 infusions. Then, of course, yesterday (Friday) was chemo day. But the preparatory blood screens showed that both my platelets and red blood cells (RBCs) both remain impaired by the last round of chemo. So on Monday I go in to the infusion center for 6 hours of whole blood transfusion. And schedule the round of chemo for next Friday, assuming the platelets will come around on their own. Now we also have high-powered meds in the refrigerator intended to prevent my white blood cell count from crashing and burning, impairing my immune system and leading to the nasty infection that the docs think was the issue driving my last trip to the emergency room after the prior round of chemotherapy.
But you know, at least for the moment, the ridiculous (not to say savage) ongoing treatment is more than worth the tradeoffs. I’m feeling good. I’ve gotten some of my guitar chops back, and can play all of the instrumentals I’ve managed to write since my voice went into the bio waste buckets with my tongue a couple years ago. I can read, and write, and watch movies. If I move sufficiently slowly, I can cook (wait until you taste my cinnamon scone roses. They are awesome!). And, having practiced last weekend with other members of the household, I can direct the kitchen staff from my perch on the bed in the corner of the room. So I’m expecting Thanksgiving to be spectacularly delicious this year. Given that it is, unfortunately but inevitably, the Last Thanksgiving for me (make a good novel title, now that I think about it), I intend to have a walloping good time.
So I hope everybody had a fun Halloween. I leave you with a few photos, I know some of you have seen these, but I like ‘em, so I’m repeating them here. Thanks, everybody. You make this war worth fighting. And remember to use ‘em while you got ‘em, ‘cause they are NOT forever!
I was reminded recently of a trip I took to Cape Cod as an undergrad at Rutgers. A couple of faculty members set up a 1.5 credit course titled “Geology and Ecology of Cape Cod”. We spent a week camping on the Cape, a group of about a dozen grad students and me. I didn’t know any of the grad students very well, and they didn’t know me. One night I spread out my sleeping bag under some hemlocks at the edge of the firelight while the grad students sat up drinking and conversing. Eventually their talk turned to me. I had spent every bit of field time sloshing in the cold water grabbing specimens, and earlier that day I caught a couple of big black racer snakes, interrupting their mating to show the class (one of the instructors was a vertebrate zoologist). The consensus among the grad students was that I was “like a football player who went a little crazy” (I wrote the quote inside the front cover of my field guide to mollusks).
The weird thing about it was that that was PRECISELY what I was at the time. A few years later, working on my doctorate at Georgia, I exploited that “crazy” love for field work. I spent two years driving a university vehicle around the southeast, collecting small mammals, herps, and birds, studying their relationship to parasitic (and medically important) mites. “Chigger” mites are pestiferous in North America, where sitting on a pine log can get you a load of mites that will make you itch miserably and swell up like you ran into a patch of poison ivy on steroids. In the tropics, chigger mites vector a number of serious diseases, explaining why the U.S. Navy was interested enough to fund esteemed Dr. C, my major prof, for research on mite ecology.
Of course, chiggers are not the only arthropod pests in the woods and fields of the deep south. On one trip to Sapelo Island off the Georgia coast, I managed to acquire a shitload of tiny, angry ticks. One evening I counted them as I removed them with tweezers. Actually, I quit counting when I got past 300. I also stopped picking them off, and simply went to sleep.
A couple of weeks later, back on campus, I started to have nasty headaches (and, except for occasional migraines as a child, I NEVER got headaches), painful joints and muscles, and running a low-grade but slowly climbing fever. The campus clinic drew blood samples that revealed Rocky Mountain Spotted Fever, a tick-vectored rickettsia (rickettsiae…I think that’s the pleural…are rather like bacteria without the tough cell wall surrounding their protoplasm). Before I got too sick, they slapped me onto antibiotics and cleared things up.
At that time, tick-born diseases were all the rage. Lyme disease had been discovered just a few years prior (possibly released in North America from a U.S. bioweapons laboratory, see Lab 257: The Disturbing Story of the Government's Secret Germ Laboratory by Michael C. Carroll, 2005). The panic was far from the equivalent of the present hysteria over Ebola, but it was definitely in the Zeitgeist.
That was also when Superfund was just getting started, and environmental cancers were of great concern. Of course, in retrospect, we know that cancers “caused” by uncontrolled hazardous materials in the environment are very rare (and generally limited to radioactive wastes or asbestos). By far the greatest triggers for human cancers are lifestyle choices and/or bad luck.
Whenever new doctors quiz me regarding basic background information, they are invariably shocked to find I have never been a smoker. My tongue, throat, and lung cancers are typical smoker’s diseases. My parents were both heavy smokers, but in truth the linkage of cancers to second hand smoke is only weakly significant (the latter in the formal, statistical sense). I’m afraid my own lifestyle choices are the source of my present difficulties. Ethanol (beverage alcohol) is a potent carcinogen. And I drank buckets of beer, wine, whiskey, whisky, gin, and rum. I also self-medicated chronic mouth infections with copious quantities of Listerine mouthwash, which is also high in alcohol content. I have to acknowledge that all those bottles of silky, creamy viognier and thick, syrupy zinfandel are highly likely to have triggered that tumor at the base of my tongue, the one that started it all. Having spread to my parotid gland, and eventually into my lymphatic vessels (despite the doctor’s best efforts to remove as much of my lymph system as possible from the line of fire) and lungs, there is little doubt about how I got to my present condition as a dying invalid.
With that big picture under our belts, I can update on my status. In general, I am doing as well as somebody with terminal respiratory cancer and ongoing treatment with powerful chemotherapeutics can do. I’m on oxygen when I’m sitting around, but I can lose the O2 to walk. Although I can’t walk very far or for very long. Until the past few days, my pain was well controlled by my pharmaceutical regimen. Pain level has crept back up lately, but as Cathy points out, I have access to a couple more tabs of dilaudid per day. That will certainly tide me over for a while. A couple months ago I actually felt good enough to go off a skin-patch delivered opiate called Fentanyl, which is a long-acting formulation (compared to the dilaudid, which is high-powered but fast-acting). I may have to go back on the Fentanyl if the pain doesn’t re-subside, but that’s not really a hardship.
So, all in all, there’s not much to report from here. Which, all things considered, is a good thing. The next bit of excitement—or at least trepidation—comes next weekend. Chemo on Friday. I’m hoping to hell I won’t be back in the emergency room on Sunday.
We’ll just have to see. Tune in next week for all the exciting news! And in the meantime, use ‘em while you got ‘em. Because they are NOT forever!
HO-O-LLLYYYY SSSSHHHIIIIIIIITTTTTT!!!!! It was only a matter of a few hours after I posted that chirpy, perky blog entry last week that things started to deteriorate in serious and savage fashion.
But let’s not start there. Let’s start with traffic in endangered and threatened species. Today’s Washington Post ran a long piece on international trade in elephant ivory and rhino horn. It’s a depressing story of human stupidity and the rapacious nature of market forces. In the past few decades, the African elephant and all half-dozen or so species of rhino around the world have been decimated. “Artistic” carved ivory is one reason, but the primary one is the weird belief in China and Vietnam that rhino horn is an aphrodisiac. I mean, the stuff is keratin—horses hoofs, human fingernails, that material. How the hell can somebody in the 2000 and teens believe it’s an efficacious biologically active compound?
Anyway, when I was a kid, there was a shop in the Port Authority Terminal in New York that sold beautifully tanned red fox pelts for $5 and grey wolf pelts for $20. This was not illegal at the time, of course. My Aunt broke down on one trip into town and bought me a fox pelt. It was one of my treasured possessions for years. Eventually I used it to tie many dozens of trout flies, light cahills (always one of my favorites) with the underfur and unnamed but remarkably effective streamers from the long tail hairs. I never did save enough for a wolf pelt. Which is just as well. It was only a matter of a few years before grey wolves were listed and illegal to possess.
Fast forward 30 years or so. In Kuwait there is a shopping district about a 40 minute drive from Kuwait City that is known for shops with quality goods and decent prices. It is a mecca (so to speak) for people who can’t go to a Middle Eastern country without making an elaborate ritual of nickel-and-diming the locals on the price of sweatshop-produced rugs and then backcasting receipts so they can further nickel and dime U.S. customs when the rug is declared. Every individual I’ve been to the Muslim world with, from lawyers and international administrators to scientists, has made this odd game a focal point of their trip.
Personally, I’m not a rug guy. But the diversity of artisanal products (and associated ripoff reproductions) that passes through small shops in the souks of the Arab world is amazing. I shop for musical instruments, glassware, art, costume jewelry, interesting trinkets, etc. Most of the stuff isn’t local. But it can be outstanding if you shop with care. One of my most prized adult possessions is an Indian ritual bell, cast of pot metal, that will ring with an absolutely gorgeous G note if rubbed with a piece of wooden dowel (which the shop owner through into the bargain). I would note that on the shop shelves, there were dozens of nearly identical bells. When I looked at them and started testing their tones (which were consistently unattractive), the guy reached under his counter and pulled out the heavier, higher-quality bell I now own. I note that haggling over price is indeed a treasured ritual in the region (although I believe Americans should always overpay), and I tried to talk him down a few dinars (he quoted the same price for the quality bell as he had listed for the crappy ones). He refused, quite reasonably, to drop his price.
I seem to have gotten a little lost in story telling here…where were we? Oh yeah. Endangered species. The next trip I made to Kuwait, I went back to the bell shop. I wandered up to the second floor…and was absolutely stunned. About a quarter of the upstairs space was taken up by an enormous stack of untanned but complete wildlife skins. There was a tiger, a number of wolves, foxes and jackals, extremely rare small cats, cheetahs, and several lions that I suspect were the essentially extinct Asian subspecies (which exists only in a carefully managed population in a dedicated national park in India). The most stunning was the tiger. It was absolutely gorgeous. I must admit that I, a dedicated professional scientist and ecologist, was tempted. The price was unbelievable—the guy wanted the equivalent of $300 U.S. for it. The next day I mentioned the tiger pelt to my class. They generously offered to hold it for me if I bought it, and work on finding a way to get it to me in the States in a later diplomatic shipment (did I mention that my class was attended by high-ranking individuals?).
Eventually good sense and scientific instincts suppressed my momentary interest in becoming an international smuggler and contributor to population decimation of critically endangered charismatic megafauna.
And why am I wasting your time with rambling tales of global wildlife mismanagement rather than focusing on terminal cancer, the nominal topic of this weblog? Because there is an important medical lesson buried in the sordid story of rhino poaching and elephant hunting. For years, I’ve been holding out hope that the ridiculous but spectacularly profitable market in “erectile dysfunction” drugs (are there really that many men with some sort of inability to have sex? That just seems really unlikely, doesn’t it?) would be the salvation of pachyderms around the world. I mean, why would you pay tens of thousands of dollars for a few grams of grimy ground up rhino horn (which is also impossible to authenticate) when you could pay a few tens of dollars for a bottle of actually efficacious product over the internet?
Turns out I’m obviously wrong about this. The price of rhino horn increases daily, and the Post article cites some of the incredible values it has achieved. I guess it’s not so much a matter of whether something actually works as whether somebody believes it works.
But not in my case. Let’s come back to cancer here for just a paragraph or two. When we started this course of chemotherapy intended not to “cure” me but to give me a few comfortable months of life, I was skeptical. I mean, it was clear from the PET CT scans that large areas of my lung surfaces were affected. I didn’t really believe that weird pine-bark-derived molecules that differentially slow cell substructure assemblage (operating more effectively on cancer cells because of their enhanced metabolism) would make a damn bit of discernible difference in my health.
But it has! I have active and aggressive lung cancer, and with the chemotherapy infusions I can breathe pretty well—not much of that childhood asthma claustrophobia. And I feel generally pretty good, although I must admit I can tell that various organ systems are deteriorating over time and becoming more dysfunctional.
The only thing that’s really bothering me now is the fact that every chemo session except one has sent me to the emergency room and gotten me admitted to the hospital for periods varying from a few days to more than a week. This week’s was particularly vicious. I posted the chirpy blog entry on Saturday night. By midday Sunday I was feeling sickish. By Sunday evening I could tell I was in trouble. Around midnight, I started vomiting. Every hour or so overnight I vomited a notable quantity of blood and mucous. I became really weak, started to shake, and rapidly dehydrated. So, Monday morning, it was off to the ER. Poor Colin, who was home from Tech for his autumn break, had to spend his second visit in a row sitting for long hours watching me writhe on a stretcher in the emergency room at GBMC while they got me admitted. And I was really sick this time. It took them two full days to get me stable, partially rehydrated, and able to take necessary medications, fluids, and nutrition. By Wednesday, there was still a question as to whether I could be released this week. Finally the doctors reluctantly agreed to discharge me on Thursday.
In this case, they think I got sick from a massive infection rather than from the chemotherapy drugs. I’m now taking two serious antibiotics to get me cleared out in time for the next chemo in a couple of weeks. I must admit I’m a little suspicious, because the timing of getting sick was synchronized with the chemo just like prior episodes. But the chemo does decimate the immune system, so it’s not unlikely the docs are correct. In fact, a goodly portion of my hospital stay involved getting my white blood cell count, red blood cell count, and immune system all back into some sort of balance. I ended up getting another unit of whole blood, along with powerful drugs providing WBC support.
And today, Saturday, well I’m feeling pretty damn good. Not great, mind you. But not bad. It sure as hell could be a lot worse—like last Sunday night. Instead, I’m doing some reading, research and writing, I’ll wander around the yard looking for stuff to photograph, and I’m able to “eat” and take my meds without too much travail. And next week? I’ll introduce you to the bureaucracy involved in registering a body to be donated to the University of Maryland system for teaching or research. It’s a more interesting story than you think.
Remember everybody: use ‘em while you got ‘em. Because they are NOT forever. We’re all gonna run out of them—some of us sooner than others, of course. Have a great week everybody.
On the remote southeastern corner of Guam there is a large beachfront bar, hopping on weekends with locals and U.S. service personnel. It has a rather incredible claim to fame: it is where Shoichi Yokoi, Japanese soldier who missed the end of hostilities on the island in 1944 when the U.S. took it back from the occupying Japanese, appeared from the jungle in 1972. It seems that his teeth finally deteriorated from his diet of freshwater shrimp, insects, and wild plants, and in his weakness he let himself be discovered by local farmers. Still not convinced the war was over, he decided he would die of malnutrition soon any way, so he might as well surrender. Instead he got his photo taken by every patron of the bar, and was shipped home to Japan as something of a war hero.
I spent a delightful evening at that bar on one of my trips to Guam. Fascinated by Shoichi’s story, I examined every photo in detail while slurping fruity cocktails. Mostly I admired the stoic Zen courage this guy had to have to live for 28 years alone on a tropical island subject to seasonal monsoons, massive hurricanes, long dry spells, and a dearth of things to eat. And when he finally gave it up, he wasn’t resentful or angry or frustrated. He was all smiles in all the photos, and was, according to news clippings posted on bulletin boards, friendly and psychologically perfectly well adjusted.
Shoichi is my role model for stoic courage under fire as I accept the physical and psychological hammering associated with terminal cancer of my respiratory system. If I survive long enough to finally get my tattoos, along with a tiny Coptic cross, I would get a portrait of Shoichi. He was, in my humble opinion, Da Man!
Anyway. So far this year, all my physiological problems have been from the treatments, not the underlying illness. Given that those problems have included a 911 rescue by ambulance and several week-long hospital stays (with a special holiday for four days in intensive care at one point), cancer treatments here in the 21st century are unavoidably brutal. Certainly in the short term they are more devastating than the course of the disease. But in the longer-term interests of survival or at least quality-of-life, they must be endured. In brief, my response to treatments went something like this: first course of radiation burned the crap out of my face and neck and, along with simultaneous chemo, put me in the hospital for recovery. Next attempt at chemotherapy after disease recurred, using monoclonal antibodies, sent me into anaphylaxis and put me on a respirator to survive the incident. Subsequent doses of more conventional chemotherapy—taxol products derived from various species of evergreen trees—sent me into the hospital after each treatment, primarily for intractable vomiting and dehydration.
Finally, in the last round of chemo before yesterday’s, we seemed to get it sorted out. The docs and nurses changed the intravenous antinauseals to two chemicals that apparently make it impossible to vomit for weeks. And sure enough, after that last dose of chemo, I didn’t vomit at all. In addition, anticipating potential dehydration in any case, they called in a nurse on our position to teach Cathy how to administer intravenous fluids via my state-of-the-art “power port” which is a wristwatch-sized device inserted in my chest as a gate to a tube that runs right down into a major artery leaving my heart. Rather than having to find a vein in my arm or hand when I need i.v. access, they just stab a specially designed needle into this permanent access port. Less physical trauma, and faster distribution of materials because distribution is by artery rather than vein.
On Wednesday, we visited my oncologist. Dr. T was practically ecstatic at my progress (the last time she saw me I was pretty much non-responsive). The real key, in addition to my growing physical strength, is the lack of fluid accumulating around my lungs in the pleural cavity. Fundamentally, this means that the chemotherapy is successfully suppressing the cancer inside the lung tissue. It actually sounded like she intends to continue the every-three-weeks chemo infusions beyond the five courses originally prescribed, if it continues to help the lungs and does not yield the repeated need for hospital admission. She even hinted that, in her estimation, I might survive longer than the few additional months that was the medical team consensus when we started down this third road of treatment.
She even has backup plans. There is an ongoing clinical trial of a specific lung cancer treatment at Johns Hopkins for which I would be a potential candidate if the taxol fails. And the Hopkins faculty at “my” hospital, the Greater Baltimore Medical Center, is in the conceptual phase of developing a clinical trial for another, new and potentially powerful lung cancer treatment. Again, I am not a candidate while the taxol is working. But should it lose its therapeutic value, I might at least be able to make a contribution to science via a clinical trial (problem being, of course, that neither you nor the treating physicians know whether you are in a treatment or control group).
Among her many qualities, it is clear that Dr. T is not a quitter. And this is important for me, from a psychological perspective. Only a few months ago, when I was desperately miserable from the aftereffects of the treatments, I was ready to die. And the balance continues to play out in my head, regarding how much I’m willing to put up with (and force my family to put up with) in dealing with my disease vs. just picking the time to move to hospice care and let myself return to the ecosystem from which I came. But Dr. T’s optimism, based as it seems to be on the reality of treatment success and potential alternate paths, is giving me some optimism that my end may not be as soon or as difficult as I’ve believed.
We’ll see. I had chemo yesterday, and have to go back on Monday for another unit of whole blood (my RBC count is still low). The vomiting, if it returns at all, isn’t expected until tomorrow or Monday. And starting Monday, I’ll get the home-administered i.v. fluids to keep me from dehydrating. If this coming week goes smoothly, I have to say my spirits will be considerably brightened.
In closing this entry, I must thank masters B, L and S for the wonderful visit on Thursday. I wish I was stronger and could have held up longer than the two hours we had, but it was great to see them.
And finally, this: use ‘em while you got ‘em. Because they ain’t forever (I was reminded to include this customary closing by a panicked call from Dr. K who noticed it was not included in last week’s entry, and thought this might indicate a change for the worse in my condition. When it was, of course, simply a slip-up on my part). Thanks for being here, everybody. I love you all. And I expect to be around for at least another week, so be sure to check in for the next entry!
