It Might Get Messy
Although, then again, it might not. I was admitted to the hospital via the Emergency Room a number of weeks ago. That was when I was, by Friday, catching the hell that comes with the chemical soup administered as chemotherapy infusion on Tuesday. Basically, every week on Thursday, Friday and Saturday I was having intense nausea and powerful, and weakening, hour-long sessions of reflex vomiting. Like clockwork, Thursdays would be suspect, and Fridays the start of two days of gastrointestinal ugliness.
It’s now the Sunday following my last Tuesday of radiation and chemotherapy. And the pattern seems to have finally broken. Yesterday, while I was weak and queasy much of the day, I managed to get some food down (at least three 250 ml cartons) and never did vomit. Today, I got 5 cartons of food in. And while I felt a little bloated and acid-tummied, I never even got a twinge of nausea. Signs of recovery? I’d say so.
Remembering, of course, that that’s recovery from the treatment for cancer, not the cancer itself. That diagnosis is months away at best. And while my gastrointestinal troubles may be abating, I am still one sick dude. My energy level sucks. Today I was able to stumble precisely the 200 meters to the beach, then could proceed no further. Had to sit in the dunes and watch the breakers while the rest of the party proceeded to chase a Portuguese Man O’War that a ghost crab had claimed. Katherine went on the offensive, and pulled the stranded jelly out of the crab’s hole. The crab, understandably pissed off, emerged to see what in hell was going on. Then decided better of it and retreated. The jelly’s bulb floated off with the next tide.
Which means it’s goddamned time for me to be able to start functioning like a human being. If Sargasso and other pelagic material are making it to the surf, I need to make it to the surf. Cool things come with southern waters. Hopefully I’ll be able to do some dipnetting in the surf to see what I can come up with. The only place I’ve collected Janthina snails, the gorgeous purple fragile-shelled free riders with the Man O’ War was in southern Florida. I’d like to get one, preferably intact, here on the Outer Banks. And, while I failed to bring medical alcohol, I can get some at the grocer’s if I can come up with odd little fishes in the surf. Over the years, we’ve collected quite a number of not-easily-identified little fishes, likely juveniles, in the surf. I’d like to get those identified at some point, and add more species to the biological community that makes the surf zone here far more biodiverse than expected.
Anyway, what I’ve managed to do so far, with Dr. Dan driving (that’s how frickin’ weak I am) at about sundown, was corral the fattest, strongest, nastiest cottonmouth I’ve ever caught. In fact, he refused to release more than a drop of venom into the collection jar. He was saving it up to kill me at the end of our acquaintance. Which he took a good shot at. While I crawled around taking photos, he saw his opportunity and dashed straightaway for my crotch. Fortunately I was able to stand up in time to let him slide right through and back to his cozy swamp.
I’ve still got the original trip goals—a green snake, a king snake, and a legless lizard. Oh, and more cottonmouth venom so we can run the toxicology tests. Hopefully it will be cloudy but not pouring tomorrow. If I can work up the energy to hike through the marsh behind the campground at Hatteras Light, I might have a chance.
So that’s the plan. I seem to be recovering. Not fast enough to satisfy me, but it’s better than the alternative. I love you all. Hopefully more good photos tomorrow or the next day. Thanks for being here for me, everyone. You are a large part of why I’m still alive and why I might yet manage to live for a few more years. So pat yourselves on the back, and check back here in the next day or so. Oh. I won’t get any of the other components of this weblog empire up and going this week. Next weekend will work. I’m on vacation!!!
It Might Get Messy
For a long time, we ecologists discounted cancer as a risk factor in nature. The thinking was that by the time animals were old enough to develop terminal tumors, they’d have been eaten by something else, obviating the cancer as a population problem. More recently, we’ve found certain cancers in certain animals to be a definite problem (technically, plants don’t get “cancer”, since their cell wall structure prevents runaway malignancy. But they do get large swellings, galls, and other “cancer equivalents”, sometimes resulting from fungal infections, but more often from insect infestations of various kinds). Most obvious (check the arrears of this blog for details) is the transmissible oral cancer of Tasmanian devils. It’s going to eliminate the affected population within decades. Then game managers hope to re-stock the habitat with non-infected individuals. I’m a little skeptical myself. Despite their being no known environmental trigger for the cancers, it seems odd that it would arise de novo and disappear forever with the last case gone cold. But, I’m not a game manager, so really am not entitled to such speculation.
More and more, cancers are becoming important issues in ecological assessment and management. For one thing, some animals are able to develop resistance in real time—on the order of years. This is evolution in action, right in our faces. The common bait killifish is a master at this. The populations are incredibly dense, reaching hundreds of individuals per square meter of mudflat in urban river systems, right downtown. After a decade or so, populations previously not subjected to urban pollutants become resistant to cancers and other diseases. Their genes are modified by “natural” selection of the pollutants, and the population goes on its merry way despite the toxins in the water and mud.
We’re finding that there is much to be interested in ecosystem cancers. But that’s a theme for another email (or several-volume book). I’m here to report on MY cancer’s progress, my physical status, and the future.
All of which are, to say the least, unknown. The doctors are happy with what they can see. Which is that where there was visible malignancy in my mouth before treatment, there is none now. But that’s not a fair measure of successful therapy. The real culprit is cancer deeper in my oral cavity, on my palate, not visible from my mouth. And scoping visuals via my nasal cavity basically show the destruction of the radiation and chemotherapy. In other words, a mess. So to really find out whether this round of treatment (which pounded the HELL out of me, I have to say) was successful means a wait of several months. In the meantime, life goes on.
Which means HOOOOLLLLLYYY SSSHHHIITTTTTTT!!!!!!!!!!! Taking a recently-treated cancer victim to the beach is a logistics and medical nightmare akin to attacking Omaha Beach in flimsy sheet-metal landing craft. For one thing, traffic was brutal nearly the entire way. And certainly the entire way from Columbia to Newport News. Which was, to say the least, unexpected. This means said cancer victim (that is, Your Obedient Servant, or YOS) was nested in the far rear seat of the minivan for around 9 hours. Arrived at beach house after one nasty vomiting fit in the car, and one immediately upon making it up the first staircase of the house. Now I smell like some horrendous industrial acidic chemical, for some reason, or maybe it’s just dead tissue, but I really, really stink. Possibly a beach house full of happy vacationers is not the ideal place for someone in my condition. However, like Operation Overlord, the die has been cast, and I’m here for a while.
It will help that my primary functions are snake hunting and supper cooking. This will keep my smelly carcass at least somewhat out of the way. It’s now 9 p.m., and I managed to force in and keep down a full suite of meds about an hour ago. They are working—just. I suspect I’m going to have to go to a reinforcing dose in another hour. Which will be just fine.
Tomorrow, I’m going to start hard quest for a green snake, a king snake, and a legless lizard, along with the more abundant and easy-to-come-by cottonmouths. While I’m doing that, I’ll make a stop at the market and get stuff to make a huge pasta y fagioli (that’s “pasta fazool” to us Italian Americans) with bread and salad for supper.
Feeling has horrifically sick as I do, I expect to be turning for succor to writing. That means this weblog is likely to get a daily or every-two-days update, with plenty of photos for your delectation. Check back often. Assuming I get my body under control so that I stop this reflex shivering and the associated intense vomiting, I expect the remainder of the weblog empire to be up and running by Sunday night per usual.
Finally, an observation that’s been rattling around in my head for several decades—since my first trip to the Middle East. “Pasta fazool” is usually treated as a grammatical mistake foisted by later generations who have lost facility with the native tongue. I suspect a more complicated story. In Arabic, bean dishes are collectively called “fool”. I’m guessing there is an Arabic root to the pronunciation of “fah jee oh lee” as “fah zool”. After all, for centuries, Muslims owned the Mediterranean shoreline and environs as deep inland as southern France via Spain, incorporating Sicily and southern Italy as well. Pasta Fool? Pasta Fazool? I’m feeling it in my aged, irradiated Italian-American bones. Tomorrow night I’ll make it with sausage and some tomatoes. My mother’s version used unsmoked pork and tomato paste. I like her version better in winter. Fresh tomatoes and some good sausage make an excellent summer supper. And, what the hell, just for consistency, later in the week I’ll make pasta lenticci, or “pasta lindeech”. This is a similar soup made with lentils playing the role of fool. My Mom’s differed from her fazool—smoked pork and bacon, and no tomatoes. Tons of garlic, though. Which, it goes without saying, will be in both my soups this week.
Well, my friends, we are off and running on a cancer-impaired beach vacation. Tune in here for all the (potentially actually) gory details. Sincerely, YOS.
It Might Get Messy
You know, in general, this has been a messy month. Makes me happy that my last radiation dose is Tuesday morning and my last chemotherapy infusion is Tuesday afternoon. Otherwise, I’m not that happy about having the treatments end. Because in this case “end” could well be as in “final”. I don’t think there’s a hell of a lot of therapeutic play if this round of treatment fails (as expected—preliminarily the docs calculated a 20% success probability). In other words, if there’s residual cancer after all this messy insult to my corporeal being, I’m going to have to live…or more likely, die…with it. But we’ll see.
Problems affiliated with the treatments seemed to compound this week. Pain is up, my throat cramps regularly, and I pour quantities of thick, brown-stained ropey mucous throughout the day. And the real problem? There’s no way to know if any of this is worth it. The malignancy itself being diffuse and smeared across my palate, it’s smack in the middle of the inflammation generated by the radiation and chemotherapy. Which means it will be weeks to months before they’re willing to try a PET Scan which could reveal the presence or absence of residual malignancy. On the plus side, in the interim I’ll be healing from the hammering of the radiation and chemotherapy.
In linear fashion, I expect things to lay out thusly. First, I’ll start to feel much better, since we’re halting the treatments. Then there’ll be some weeks to months when I feel normal (well, as normal as a person with his tongue hacked out and his windpipe and gastrointestinal system separated by a thick slab of chest muscle). At that point, assuming there is indeed residual cancer, I’ll start to feel the symptoms as the affected spots grow and mature. Within a year or so, I’ll have to get palliative treatment for the symptoms. And then at that moment it becomes a fight for life once again. Except this time, my side is pretty much out of ideas, weapons, and will. At that point, I fall back on my experience with my Mom, who spent her last days at home under my night time care with supplies from a hospice organization. With Mom, it worked out well. Beth was around to take care of her during the day, and Beth’s posse was experienced in handling the fatally ill. Mom’s sister, my beloved Aunt Deet (still cranking in Florida) and I took the night shift.
So basically I’m prepared for all eventualities. If I achieve some level of “cure”, or at least reach a 5 year survival probability, I’ll have time to finish this book on urban ecosystems (which is proceeding very well, by the way, although rather too slowly for one likely to die any time soon). Plus I have my cut paper art, at which I am gaining proficiency all the time.
And if I do NOT reach some level of cure and end up paying boatman Charon for a quick ferry across the Rivers Styx and Acheron, separating the eternal wetland of the dead from the occasionally dry and delightful biosphere of the living, I’ll know what to expect.
In the meantime, assuming I have the post-chemo vomiting under control, I may get a few days at the beach. A large house has been rented, Cathy has lined up air beds and corners, and the kitchen undoubtedly needs someone to run it. And I am just the boy for THAT operation. Hopefully I’ll have a chance to continue our long run of collecting small, unidentifiable fish in the surf, and retrieving venom from a large number of cottonmouth snakes to run skin-abrasion toxicology experiments on myself.
I don’t have any deep, burning needs in my soul that I feel compelled to fill before I die. But a trip to the beach? That’ll fill lots of immediate needs. I may be unable to eat seafood (or anything else, for that matter), but I love the coast. Can’t wait to see it.
Everybody check tomorrow night. I expect to have the full weblog empire up and going, so see http://docviper.livejournal.com/ , http://theresaturtleinmysoup.blogspot.com/ , http://sustainablebiospheredotnet.blogspot.com/ , and professional blog at http://aehsfoundation.org/ . And don’t forget Doctor Crossley’s wild west blog at ccrossley.typepad.com/ .
As a bonus, for my love for all of you and all you do for me, I leave you with a few photos from the hospital campus. Thanks, guys!!!
Although, after last week, it could hardly get any messier. Actually, as of this writing (it’s Thursday, chemo infusion was Tuesday), this is the fourth day in a row I am feeling really, really good. As in healthy, not producing huge clots of mucous, not in any real pain.
I don’t know what’s happening physiologically, but it scares the crap out of me. Because if I feel this good and the treatments fail to arrest the cancer, I’m going to be really pissed off about dying. It will be a hell of a lot easier to let myself go if I feel like shit. If I’m feeling happy and healthy, I’m thinking whatever Ingmar Bergman form the “grim reaper” takes, he or she should stay away. I’ve got a state-of-the-art compound crossbow and I know how to use it!
Does everybody know the story of key anti-cancer drug Taxol? In the 1960s, the National Cancer Institute funded the Dept. of Agriculture to collect North American plants for evaluation. The bark of a Pacific forest understory yew proved to have an extractable compound that blocked cell division in malignant tissues rather effectively. Not surprisingly, harvest of Pacific Yew bark expanded until it plateaued at several hundred thousand pounds per year. The bark of a single tree yielded a single dose of Taxol. Bristol Meyers, plugged in by agreement with the NCI, figured out an alternative method for obtaining Taxol in larger quantities. They isolated a similar but therapeutically inactive chemical from the common ornamental yew, and manipulated it chemically into Taxol. Thus, in my drip bag on Tuesdays, one of the most important compounds is a Taxol derivative, Paclitaxel. Got some horrible side effects, and much of the OTHER material in the drip is intended to block those side effects. Last week, the blockage clearly failed. This week, it seems (so far, at least) to be holding up.
Anyway. Most of my week is taken up not with chemotherapy, which is a once-per 3 hour infusion, but by twice-a-day doses of radiation. The radiation beams are generated by powerful machinery, probably creating enough radioactivity to sicken whole neighborhoods in Baltimore. Yesterday, the machine “broke down”, as the technicians put it. Had to call the radiation repair people. I sat in the lounge working for the hour it took the cavalry to arrive. When the repair guy DOES show up, he’s wearing plumber’s overalls and carrying a small toolbox in one hand, flipping a screwdriver in the other. I’m thinkin’: this is the guy who’s gonna repair a dangerous and fussy radiation generator? Apparently so, half an hour after he showed up, we were back in business.
Got home late, took my anti-Taxol-side-effect steroid. Took another one this morning. Seems to be working—I just ate 3 cartons of liquid “food”. My weight is dropping like a shot pigeon—the metabolic boost of the radiation, compared with being sick last week, has me well under 190 pounds for the first time since high school. Plus, I get desperately hungry. Which, lacking a tongue and a functional oral cavity, is frankly frustrating.
Oops. Spoke a little too quick. After Colin buzzed me home from the hospital, my tummy tightened up. And I started into a fit of uncontrollable vomiting. What a pain in the ass! By sheer force of will, I stifled the waves of nausea for enough time to take two of the steroid tabs. Kept most of that down. And it seemed to truncate the actual vomiting. I don’t feel that great any more—stomach is churned and churning. But so far I haven’t vomited again. If I get through tomorrow without…or at least with minimal…vomiting, it’ll be a victory for steroids. And for keeping me the hell out of the damn hospital!
The gold standard in anti-nauseals is a drug called Zofran. It’s so effective there’s a worldwide shortage. Zofran basically blocks the cascade of nervous system changes associated with vomiting. Problem is, in the chemotherapy infusion package, the primary antinauseal is a steroid called dexamethasone. This drug works great in truncating all the nasty, almost caustic effects of the chemo mix. However, for several days after chemo, the dexamethasone locks up all the Zofran receptors and prevents Zofran from working. This frustrates the hell out of emergency room staff when people like me show up dehydrated and weak.
This week, I didn’t start intense fits of vomiting until Friday. I spent all day Friday taking dexamethasone and attempting to suppress the vomiting by the deepest meditation of which I am capable (given pain and discomfort levels, this is difficult at best). Finally last night I recalled that in the hospital last week they put be back on Zofran by Friday night. So I took one. I remained queasy and unable to sleep—finally passed out at 4 a.m. after watching Loreena McKennit’s video from the Alhambra. Today I have a baseline queasiness, but I got a couple cartons of food down. I’d say I may have beaten the vomiting this week. Two more chemo sessions to go. I’d love to avoid the hospital for both. But we’ll see.
But I’ll get by. Especially if I continue to feel this good. Starting Sunday night, don’t forget to check in at the rest of the weblog empire: http://docviper.livejournal.com/, http://theresaturtleinmysoup.blogspot.com/ , http://sustainablebiospheredotnet.blogspot.com/, plus professional blog at http://www.aehsfoundation.org/ (go to lower left and click through to sustainability weblog), and never forget Dr. Crossley’s wild west weblog at http://daccrossley.typepad.com/ .
Love to everyone. Glad you’re here—you’re making the fight easier and sweeter. Special shout-outs this week to Lex and Darby for the menu, and Ms. Terry for the PhD pen and magazines, plus much love. Hang in there everybody!
PS--a couple photos from the hospital campus for your delectation:
Actually, this week it is VERY messy. I am back in the hospital again. After my chemo infusion on Tuesday, I started to get nauseous. Then I started to vomit. Then I couldn’t keep the anti-nausea drugs down. Things were intense. I was hurting. And, it was Friday, meaning I’d be out of the doctor’s hands for the weekend (weekdays I spend all day in the hospital to get my morning and afternoon radiation doses). So Dr. N made an executive decision. Head for ER for evaluation and admission to stem the intense vomiting.
I waited for Jesse to get down to Radiation Oncology so he could carry my backpack for me, and we hiked through the hospital to ER. After some trouble accessing my subcutaneous power port, they ran an IV straight into my right hand. Started dripping fluids and anti-nausea drugs. Debated whether the brown flecks of blood in my gut fluids (visible in the cannula of the feeding tube) were due simply to the wrenching damage of the radiation and chemotherapy, or were a new, more dangerous problem somewhere in my gastrointestinal system.
They considered running an endoscope into my gut. After thinking about it some, and an interview with the gastroenterologist, they decided it was unlikely to be some new life-threatening illness but simply the fallout from regular treatments. Resident Dr. J scoped my throat and didn’t find any obvious inflammatory spots or specific bleeding ulcers. Just the general swelling of the treatments ripping up healthy tissue at a level of intensity hopefully just less than that meted out to the malignancy.
It is now Saturday evening. The fluids and antinauseals seem to have stemmed the intense fits of vomiting. In fact, I just tried a can of liquid “food” to see how my system handled it. It’s been an hour, and it stayed down. Of course, they gave me dilaudid and Ativan at around the same time, so I’m guessing road-killed chipmunk would stay down, since my entire bodily system was drug-dimmed.
They put me on the “Advanced Therapy” floor. What that means seems to be that I am monitored 24 hours a day electronically, so if I get up to go to the can or move from bed to chair, somebody at the front desk knows about it and sends a nurse running to find out what’s wrong. At this point, there’s nothing particularly wrong, except I still feel like shit. But I’m not nauseous. So I guess it’s just another trade-off.
Expect to go home tomorrow. Seems like I can eat without getting desperately ill, and they’ll write scrips for liters of antinauseals. All things considered, I’m lucky to get this entry into “print”. I’m afraid this week I will not get any other of the sites updated. I bet Dr. Crossley does, though, so surf on over to ccrossley.typepad.com/ to get your weblog fix for the week. I know I’m way behind on email, I’ll try to get caught up. And I’ll get the rest of the empire kicked into gear next weekend, so be prepared to do some reading. Assuming I don’t repeat this health “event” after Tuesday’s round of chemotherapy!
I leave you with a couple of photos from the hospital grounds. Thanks for being here, everybody. I love you all, and you give me strength to keep on the road!
It Might Get Messy
At the turn of the century (that’s the LAST century, not the recent one), my Mom’s family lived in an agricultural village called Pianozza in the floodplain northeast of Genoa and west of Florence. Apparently life as sharecropping peasants eventually wore them down, and in 1902 (according to records from Ellis Island) they changed venue to Union City, New Jersey where a complicated extended family purchased an apartment house and squeezed several generations of several families into the tall, narrow space.
Being from the north of Italy, Mom’s people felt that southern Italians were a different, and more dangerous, species. There was an elaborate Sicilian restaurant around the corner from the house on 27th Street where Mom occasionally took me for lunch. One day, when we entered, Mom looked around, sniffed, and said “Dave, we have to go. There’s Sicilians here.” Even at the age of 7 or so, I knew this was unnecessarily dramatic. But revealing regarding the state of the Italian-American community at that time.
And why do I entertain you with this childhood anecdote? Because I am not alone in in having Italian ancestral throat cancer. John Gotti, one time Capo of the Gambino New York area crime family, was brought down, after a long career of murder and racketeering, by throat cancer. Two items of note in Gotti’s life. When his boss, “Big Paulie” Castellano was affronted by Gotti’s heavy gambling habit and narcotics operation (Castellano had a standing order for death to “family” members dealing drugs) and was about to have him removed, Gotti moved first and killed Castellano. He also, in retribution for an automobile accident ruled accidental by the police, dissolved his next door neighbor in a vat of acid with his feet stuck in cement poured in the bottom of the vat. Post-dissolution, he was dropped offshore somewhere in the New York Bight.
Anyway. This has been a hellish week for me. I’m not taking to the radiation as effectively as I did two years ago. This means in the morning, and sometimes in the afternoon, I vomit. Note I have several drugs intended to prevent nausea and vomiting. Further note that when I take them first thing in the morning, they are the first thing I vomit up. My dietician, Nurse K, has suggested a sequencing of medicines and foods that may or may not help keep me from losing my lunch. Even when I haven’t HAD lunch.
With that said, however, it appears that the radiation IS working. Dr. N says he can see a void where part of the tumor is now gone—burned out in place. He expects the rest of the tumorous area to follow suit. It is at least conceivable that I will beat the 80% chance of death scenario and survive this cancer a little longer. I sure hope so. Summer’s finally here, and I’d like to be around to enjoy it, and the autumn following. But we’ll just have to see.
This was also the week I went in for more surgery. A medical “port” is a small device which is inserted in the chest. A long cannula runs from the device into a large vein (providing an expressway not to the skull, as late 60s Buddy Miles Express would have it, but to the heart, so injected materials are rapidly circulated). The Device itself is about the size of a stack of quarters, and about the same weight. Injections are via specially designed needle into a screened-over void in the device. They gave me the old one they pulled from my left side, its photo is below. My port ceased functioning when the cannula broke loose from the injection portal. They replaced it on the right side with a working model.
And why are they inserting medical apparatus directly and permanently into my bodily infrastructure? Because, of course, I’m on a weekly course of chemotherapeutic infusion. The chemo seems to be contributing to my gastrointestinal problems, although I can’t be certain. In any case, next week I’ll get my chemo via high-tech port vs. low-tech intravenous needle.
The radiation (and maybe the chemo) is also sapping my strength. I am very weak, and have an almost…wait, strike that “almost”…a pathological need to sleep. So most days I get my 0830 radiation, find a comfortable couch in the waiting rooms, and fall into a bizarre dreamy sleep until my 1530 treatment. Some days I wake up to take a walk around the campus, and sometimes I get into writing, but the problem is…uh…problematic enough that my writing progress has been very poor.
This week, I was even too sick to respond to emails. Can you imagine me, for whom email is a dearly beloved form of communication, unable to deal with email? This frustrates the hell out of me, and I expect pisses off those of you who take the time to email me as you do. So I apologize. I am working my way back into writing strength. This weekend I expect/hope to get caught up on emails built up in my in-box, and get some new threads started. I also hope and expect to get caught up on my writing…the 5 weblogs I maintain, plus the urban ecosystems book. I just have to fight my way through being weak and sick on a daily basis. I’m on it, guys. Please bear with me.
Finally, by Sunday night, I expect to have new material up around the horn. So check out http://theresaturtleinmysoup.blogspot.com/ , http://sustainablebiospheredotnet.blogspot.com/, http://docviper.livejournal.com/ , and my professional blog at http://aehsfoundation.org/ (go to lower left on the home page and click through to the blog). Also, don’t miss DAC Crossley’s wild west weblog at http://ccrossley.typepad.com/ .
My apologies to all to whom I owe communications. My thanks to all wellwishers. My love to you all for as long as I have love to give!
