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!
Thinking back over my life, just what, I inquire, has been my proudest accomplishment as a parent? The answer is simple and clear: raised 3 children and never visited a theme park. This is a real conversation stopper at parties—people seem to equate this ellipsis [correct word?] with child abuse. We get almost as many shocked looks as we used to get in supermarkets when one of the kids was jealous of another and we would tell said child that we loved child B more than child A so child A might as well clam up.
However. Just because I didn’t drag the kids around expensive real estate populated by actors in talking rodent suits doesn’t mean I didn’t work in such an establishment in my younger days.
Warner Brothers Jungle Habitat in West Milford, New Jersey (you got there by making a left onto the park access drive just before the A&W root beer stand at the “Y” on the Greenwood Lake Road) was an odd (and ultimately unsuccessful) enterprise in which happy vacationers drove through a series of enclosures holding a variety of showy exotic wildlife in a carefully manicured version of the Upland Hardwood Forest that used to cover this landscape [1].
I learned a lot while I worked there. For instance, if you carried a garden rake when you walked past the pen holding the baby white rhinoceroses (is that really the plural of rhinoceros? Looks awful clumsy…), they would squeal with pleasure and run to you to get their backs scratched as hard as you could scrape the sharp metal across their very thick hide. I also learned that dromedary camels are generally unpleasant and are likely to bite at the slightest…or even no…provocation. And that electrified fences and massive guard dogs are insufficient constraints to hold a couple dozen baboons under any circumstances.
Anyway. My job had nothing to do with the livestock. I was the Chief Garbage Man for one summer (the opening year, in fact), in charge of a crew tasked with keeping the trash cans empty and the rest rooms clean. Neither of which was as simple as it sounds. It turns out the park designers grossly underspecified the number of both needed to handle the daily visitor load. It took us a while to sort out tricks to keep things at least moderately sanitary. And, in fact, women’s sanitary products were our most difficult challenge. The primary rest room in the cantonment area (snack bar, souvenir stand, etc.) tended to accumulate them in heaps unless we could get staff in every half hour or so. Which we seldom did.
Despite technical difficulties, it wasn’t a bad summer job. Certainly beat packing books for shipment or loading and unloading trucks in the warehouses jammed along Route 3 in Totowa. My last day of work, a bunch of us hung out long after the park closed, drinking Mateus Rose (cheap Portuguese sweet wine, for those of you too young to remember the cute little rotund bottle) and imitating the animal sounds for most of the night. All things considered, I’m still surprised that we didn’t attempt to enter the lion enclosure or tease the baboons into a homicidal rage.
WARNING: WHAT FOLLOWS IS REALISTICALLY HONEST AND THEREFORE DISGUSTING. READER DISCRETION IS ADVISED.
And why, I hear you inquiring, am I regaling you with summer job tales here in this cancer diary? Because having a lingering, chronic, terminal illness comes with a tremendous waste-management challenge. One that makes snowdrifts of blood-splotched feminine hygiene products look antiseptically sanitary in comparison. For one thing, both the disease (cancer of the cells that make up the mucous membranes of my lungs and pleural cavity) and its treatments (destructively massive doses of radiation and barely sublethal concentrations of chemotherapy drugs) cause constant “weeping” of mucous that has to be mopped up with paper towels and discarded somewhere the dog can’t dig them out. Then there is the episodic bleeding, which is a similar, if more colorful, problem. And these bodily exudates invariably reach more than paper towels. Clothes, for example. And bedding. Stuff that has to be washed more or less frequently.
Then there is the issue of various liquids needed to survive. Surrounding my sick bed are tables holding liquid food, beakers of water, bottles of Gatorade, and cans of decaf coke, all begging to be knocked over onto the floor or (more traumatically) carpet. Plus, toileting is an issue. When the chemotherapy toxins rendered me unable to walk steadily enough to reach the bathroom overnight, I had to use hospital-style bed urinals. Which also need to be emptied frequently. And then there are the inner workings of the tracheostomy hardware. These little tubes fill with mucous over time, and need to be changed out. I keep a dish of half water/half hydrogen peroxide handy, and swap out four of the cannulae as needed. When the fourth gets too clogged to allow breathing, the entire enterprise has to be hauled to the sink for cleaning and refilling.
Anyway, you get the picture. Cancer is not only “not pretty” in a metaphorical sense, it is quite literally not pretty. It is also, by the intricate nature of its logistical demands (i.e., feeding, cleaning), inherently harder on the caregiver than the victim. Cathy has been uncomplainingly handling my mess for years now. And we finally got a nurse, but it turns out she’s not here to help out with general sickness items. She actually adds to it. She showed Cathy how to access my medical port so that I can be given intravenous fluids at home instead of at the hospital 40 minutes away.
So there you have it. Cancer is icky. Perhaps not unexpectedly so. I suppose it could be worse. As indeed it could have been at Warner Brothers Jungle Habitat. Several elephants were among the animal collection. I have a feeling that cleaning up after them would make changing garbage bags seem like a dream vacation.
References
[1] Interesting information and reminiscences at http://weirdnj.com/stories/abandoned/jungle-habitat/
