It Might Get Messy

Oh, in fact it is indeed going to get VERY messy. But for short term—say through this weekend—we have a little break to think things through. Let’s take advantage.


First, the diagnostics that were being done so efficiently are now starting to make me nervous. Yesterday they made a nice 3 dimensional mask of my head and upper torso (apologies for forgetting a photo, I’ll grab one next visit). This bit of sculpture positions 3 chunks of metal such that the radiation sources can be placed precisely where needed for each session, twice a day every day. 


This technology is pretty cool, BTW. The plastic sets up at 165 Fahrenheit, so has some real potential for art sculpture and/or model railroading. I’ll let you know about that when I get there.


Anyway, the surgical oncologist needs me to get training in some sort of swallowing technique. No idea what he’s talking about, but I’m just gonna guess that if there is some kind of swallowing that I need to have training and practice in, it’s not the kind of thing I should be bitching about. I set that training session up in coordination with the preparation of my dental fluoride insets that are apparently the only thing that keep my mouth full of teeth while the entire oral apparatus is assaulted with radiation and toxic chemicals.


But here’s the kicker for today. Late morning the radiation oncologist calls, says she needs an MRI because she “can’t finish writing your treatment plan” unless she can see this one more bit of whatever.


What we have to remember, though, is that there is a huge prognostic threshold in the distribution of cancerous tissue. If malignancies are confined to my head and neck, even if (as these have) they’ve gone over the trench tops into the lymphatic system, the prognosis is great. Conversely, if the cancer has made it to the shoulders and torso, I’m in much deeper shit. 


So. I’m not at all sure why the doc needs this MRI on Monday. But I’m concerned about the implications. I’ll let you know as I gather more info… . 

It Might Get Messy

It’s always been an object of (my) faith that life needs death. And of course it bugs me that the concept is like a self-help mystic selling cheap salvation (as the Swimming Pool Qs put it) from the back of a comic tabloid. But the essential character of life is adaptation, and absent death-as-room-to-move, where are we gonna get the adaptive changes? 


Maybe there ARE alternatives. Butterflies pack themselves up into a chrysalis, liquefy themselves, then reconstitute into happy and healthy adults. Somewhere in that chain of processes, that insect is essentially, if not actually, dead. Gotta be. It’s just a few milliliters of syrupy goo with no recognizable features. So maybe there’s an alternative to that need for actual death as the giver of life. 


And just maybe that’s where modern-day therapies for difficult malignancies line themselves up. As a cell-by-cell disease, cancers could exploit that butterfly chrysalis trick to hijack whatever the hell cells they want. Or, or perhaps it should be and/or, we the susceptible and potentially treatable could exploit the transformation to unglue the disease from its genetic anchors, cut it adrift in a pool of syrup, and end its life cycle right there.


In a way I’m guessing that’s where my doctors are heading. 

remember in most browsers you can double-click on the figures to zoom for better visibility

This first figure is the schematic sagittal section of my head scribbled by my radiation oncologist a couple weeks ago. The ladder-like structure on the right is the vertebral column of my neck, the open semi-circle to its left is my tongue, the big scribbled mass at the base of the tongue is the primary tumor (one per side, and, yeah, all the docs have been impressed with its size). The smaller scribbled mass is the satellite tumors of the salivary, parotid, and lymphatic glands. The rough triangle is, I believe, the thyroid. Apparently all these glands, or almost all of them, are going to roast into raisins when the radiation and chemicals start to hit them. 


Now, this second figure here:

Is pretty much the GIS map from “here” to “there” and the timeline itinerary needed to make the trip. The Hopkins people say they don’t like the “usual procedure”, that they get much better results doing it their way. Which is 2X daily radiation—show up in the morning, be packed with the rad sources, wait 6 hours, be packed again, go home, show up next day for more of the same. Oh, and those arrows on the timeline? That’s the chemo cocktail. Every couple days. I mean, while you’re sitting there being basted by the radiation, you might as well get the chemical marinade, no?


In the middle of that timeline, between the 16 day and the 12 day fighting rounds, there’s an X—a week off. I gather the entire process is just a tad too intense for human physiology, and you need the time off to be able to survive to the end. 


Icky is right. But here’s the payoff. See this 86% down there? 

That’s the 5-year survival Hopkins gets with this procedure. If you poke around the otopharyngeal cancer sites on the web and match ‘em up to my tumor stages and distribution, you come up with 30% to 50%. I’m in for the Hopkins people. Tomorrow I’m up in Baltimore for additional diagnostics. Anything interesting shows up, I’ll get you a bonus entry tomorrow evening. Thanks for stoppin’ by, and don’t miss such satellite blogs as 
http://theresaturtleinmysoup.blogspot.com/
http://docviper.livejournal.com/
http://endoftheworldpartdeux.blogspot.com/
http://sustainablebiospheredotnet.com/ 
Thanks again!


Oh. And the 86%? Well, that sure as hell sounds good to me. I'll see you all on the other side of that event horizon because I really like those odds….

It Might Get Messy

When Adolph Hitler’s mother was dying of cancer, her doctors insisted on soaking her breast lesions under cloths saturated with iodoform and otherwise sort of bathing her in it. According to the Wikipedia entry for iodoform [which appears to be well-researched and informative, BTW] Klara Hitler died of iodoform poisoning and not her malignancies. I presume they used iodoform because the more common chloroform was known to be ineffective, but why the medical profession thought any small halogenated organic would be efficacious vs. cancer is beyond me. Of course, I flunked chemistry [twice] at Rutgers, so may not be the best person to be conducting this inquiry.


I bring this up because cancer treatment technology is, as a former boss and cancer survivor told me earlier in the week, improving dramatically day-by-day, practically hour-by-hour. Jim was given a month to live on his initial diagnosis 6 years ago, he is in complete remission—basically cancer-free—now, and his life is back on high-powered butt-kicking science direction and in a comfortable personal place. He counsels confidence. And Jim, unlike me, is an actual toxicologist who understands the arcane interactions of chemistry and biology.


I sorted through the classification criteria available on the web before I got to Hopkins last week for the actual diagnosis of my otopharyngeal tumors. I called it spot-on. Stage 4 +. Metastatic, primary masses on the base of the tongue, satellites in the salivary and parotid glands and, nightmare of cancer prognostics, the lymph system. In general, nasty. But as the docs were careful to point out, not nearly as nasty as it used to be. 


Depending on what you mean by “used to be”, things are a LOT better these days. At least from the cancer perspective. 


Among dinosaurs, only a single evolutionary line—the hadrosaurs, those duck-billed and quasi-bipedal herbivores, got cancer at all. And then it was only a very few individuals, and fewer still of the known tumors were malignant. 


Jump ahead a few hundred million years. A survey of more than 3000 skeletal remains from across the long human history of what is now Serbia turned up 4 recordable tumors, one benign. 


Of course, this datum should not be taken as an indicator of some kind of Indo-European Eden. The average age of death in the bodies studied was 36. Nobody had TIME to get cancer!


Presently, we’ve got sort of the obverse problem. Plenty of time to get cancer, not enough time to figure out how to treat it. Although, given the few decades that comprise pretty much the entire history of systematic cancer research, we’re really not doing all that bad. 


By the 1950s, we understood the analogy between the evolution of drug-resistance in cancers as in microbes and arthropod. One researcher, Min Chiu Li, actually lost his job because he insisted on treating his patient until their blood biomarkers fell to zero rather than near-zero. His bosses thought he was being pointlessly cruel. 


Then in the 1960s researchers began even more controversial experiments with 4-drug cocktails of the most lethal stuff they had. No panaceas, of course, but further advancements. 


The Hopkins people are proposing to treat me with an out-of-the-mainstream, intensive, debilitating, and at least somewhat dangerous 5 week course of multiple chemicals plus radiation. My radiation oncologist, that’s the large German woman with the massive personality and the swaggering, boundless self-confidence, couldn’t contain her enthusiasm. She shoved me over on the examining table, tore off a meter or so of paper, got out a pen and sketched the whole thing for me, like a John Madden Monday Night Football telestrator or one of my own white-board scrawls to an undergraduate class learning more about sustainability than they really wanted to know.  


I’ll lay this out for you—with telestrator-style annotations on photographs of her lecture sketch—in our next installment here. In the meantime, take some comfort from what Jim reported. Between the day he was diagnosed with a month to live and the time they got his treatment under way, things changed big-time for the better. He’s alive and healthy and will be for a long time.


Please visit the other stops on this weblog tour when you can:
http://sustainablebiospheredotnet.blogspot.com/
http://docviper.livejournal.com/
http://theresaturtleinmysoup.blogspot.com/


Thanks!


Notes


Regarding dinosaur cancers
http://www.guardian.co.uk/science/2003/oct/23/dinosaurs.science


Serbian survey of 3000 skeleton for cancers
http://news.nationalgeographic.com/news/2004/07/0713_040713_skeletoncancer.html


A very, very well-written and poignant description of Klara Hitler’s cancer treatment is in John Toland’s biography Adolph Hitler. I read the 1976 hardcover, and can recall it nearly word-for-word. Now THAT’s a good book!


Finally, the two best books about cancer I’ve found lately are The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee, and Cancer: The Evolutionary Legacy by Mel Greaves. Both highly recommended.

Lebensraum

A few years ago, jazz producer and entrepreneur Joel Dorn (I think) ended up with the tapes of a radio broadcast concert by Rahsaan Roland Kirk from Germany in the 1970s. To the disgust of his record company (and it was HIS record company,BTW) he insisted on naming the resulting (outstanding) album “Brotherman in the Fatherland”. Even though Dorn recounts the deal at length in the liner notes, it remains unclear why he stuck to his guns on this. I’m gonna guess that it was because: a) Kirk would have appreciated the irony; b) it pissed his record company off; and c) he could. 


For vaguely similar reasons, I’m titling this one with the vaguely similar Lebensraum. Based on none-too-productive casual research, I’m beginning to think that the “German” side of my father’s family may have been Alsatian Jews. And that at least some of the Germans in my mother’s ancestry may have been Jewish as well. As many of you know, I pretty much live for irony. Not necessarily TASTEFUL irony, of course… . 


Anyway, here’s the deal. For the foreseeable future (which, given present state of available cancer therapies is NOT going to be pretty), I’m going to shift http://endoftheworldpartdeux.blogspot.com/, originally intended for commentary on music and mass media, to the diary of my illness. But, having recently discovered how smegging easy it is to record shit on Mac laptops, I still need a place to park music and music reviews. So I’ll just make http://theresaturtleinmysoup.blogspot.com/ into a food-plus mode, where we’ll pick up entertainment along with dining. That will leave http://sustainablebiospheredotnet.blogspot.com/ for ecosystems analysis and sustainability science, and http://docviper.livejournal.com/ for family, photography, and general fun. Hopefully this meets with your approval. With a little luck—like I’m still here to be writing this shit next year at this time—maybe we’ll rearrange priorities again. I’d sure as hell be up for that!


“Brotherman” is an outstanding album, BTW. Highly recommended—no household should be without!

It Might Get Messy

When I was a kid, my parents occasionally purchased linens from a young woman who peddled door-to-door. She was absolutely fascinating—attractive, slender, intelligent, humorous…and born with bizarre little tyrannosaur-like arms, useless stubs on her shoulders. She drove her car, carried and displayed her samples, closed deals, and wrote out the paperwork with her feet only. She would come into the living room, sit on the floor, slip off her shoes, and go to work.

She was a victim of the “wonder” drug thalidomide, hailed in the 50s as something of a psychological equivalent of cortisone. Like cortisone, thalidomide had its dark side. Causing horrific defects in the genesis of limbs in the developing human embryo would have to go in that category.

I bring this up because I want to point out that no matter how much you think the universe is kicking your ass, it’s not.

First, the universe doesn’t kick asses. The universe simply IS. If your ass happens to be in the way of whatever the universe has on its schedule that day, it’s gonna get kicked. But don’t take it personally. Or is that “personal”? I’m never sure… .

Second, whatever is happening to your ass at the moment, it could be one hell of a lot worse. And in a fair proportion of the infinite number of parallel universes that might well be kicking around the adjoining time-space continua, it is indeed worse.

For example. Yesterday in the basement tunnels under one of the Johns Hopkins hospital facilities the radiation oncologist fired up the output on my PET scan. The Positron Emission Tomography technology is just awesome. Radiolabeled glucose from the circulatory system transfers selectively to metabolically active locations in the body—say, for example, malignancies. You get a striking three-dimensional image of active tumors as they slurp up the sugar and crank it into the physiological processors to generate more cancer cells.

The PET scan output was frightening even to me, and of course I have only the most rudimentary understanding of what the hell I’m looking at. But you can see two big primary tumors at the base of the mandible, larger on the left side. Then, the really scary stuff. The lymph nodes, salivary glands, and pituitary glands, all glowing in sharp silver relief. Anastomy [the spell-checker doesn’t like that word, BTW. But I do], the real horror of cancer.

There are many details, some good, some bad, visible in the diagnostics. We’ll cover those when the time comes. Along with the therapy—which promises to be difficult at best. Hell, even the preparation for the therapy is difficult, not to say disgusting.

For the moment, there is a parallel universe where these tumorous masses in my throat and neck were discovered 6 or 7 years ago. My radiation oncologist (or “rad onc”, as I like to think of her) says that in those old days (or maybe it’s “olde dayes”), they would have done serious surgery—removing not just my tongue and glands, but voice box and affiliated structures as well!

Holy frickin’ hell. I guess this IS serious. She says they try to avoid that kind of massive excision these days, combining aggressive radiation and chemotherapy with some final tissue removal just to clean things up. She says this lets most patients keep their tongues and voice boxes so they can function better than they might have in the past. She reports “I’ve done this 170 times and I’ve only lost two”. And I say “Wow. Two deaths on that many otopharyngeal cancers? That’s awesome!” And she looks at me quizzically. “No. Two TONGUES. Zero deaths.”….

…but I’m telling you this….if she DOES end up having to hack out my tongue, I’m not putting up with the “sorry, it’s medical waste” crap the gall bladder guy gave me. I will have that tongue fixed in formalin and preserved in ethanol (preferably some high-end brand of vodka with a colorful label) on a display shelf in my studio…..


Anyway. If you have a moment to stick around, visit the other nodes in this weblog network:


http://docviper.livejournal.com/
http://theresaturtleinmysoup.blogspot.com/
http://sustainablebiospheredotnet.blogspot.com/


And thanks for stoppin' by!

It Might Get Messy

My maternal grandfather was, as my Mom used to put it in her lighthearted fashion, “an incredible pain in the ass”. Among his eccentricities, he refused to eat pasta. No idea why. But since 98% of the cooking in Union City was done by women of Italian extraction, and the family wasn’t wealthy, and everyone loved it anyway, pasta was ALWAYS on the menu. 


Which meant that Debbie Grandpa (named for the gorgeous and energetic Irish setter who took up most of the room in the second floor digs on 27th Street, vs. Butch Grandpa on my father’s side, named for the mixed-breed collie-slash-border-collie guy who lived in Haworth) always had a little bowl of polenta prepared for his dinner. 


Now, these days, I find that instant or quick-cooking polenta, from Italy, the U.S. or Argentina, is excellent. Noticeably better, in fact, than non-quick-cooking polenta. Which is a good thing. Non-quick-cooking polenta is, as my Mom used to put it, “an incredible pain in the ass”. You have to add it to the broth carefully so it doesn’t lump, stir it frickin’ forever so it doesn’t lump, finish it gently so it doesn’t lump…and then, it lumps anyway. 


Quick-cooking polenta? Well, you stir it up, heat it, serve it. No problems, no lumps, no issues. And it’s delicious.


Grandpa’s polenta had to be mixed, stirred, and finished un-lumpily via great exertion. I sometimes got a fingerful of it, loved it. When I got to the south and discovered grits, I felt right at home. 


Unsurprisingly, perhaps, nobody else in the Union City household ate polenta. The first few times I made it for my mother when she visited me after I left home, she refused to even look at it. Although, to her credit, eventually she got over it and even learned to enjoy a nice grilled slice with a little butter and cheese. Well, make that a lot of butter. Mom didn’t eat a “little” butter on anything.


Anyway. I bring this up because my personal medical ecosystem, despite being composed of a suite of completely unrelated and unfamiliar physicians, has operated so far as a cohesive and holistic more-than-the-sum-of-its-parts, just like we speculated ecosystems should back when systems ecology was an actual thing. 


On Thursday morning when my GP realized he was looking at tumors, and tumors that seemed to have anastomosed into salivary and parotid glands, his objective became to get my blood pressure down so that a surgical biopsy could be done without waiting. On Thursday night, the suburban Eye, Nose and Throat guy determined that he needed to get as much superficial swelling down as possible so the Hopkins surgeons and oncologists could get a better feel—literally—for what the hell was going on. So he gave me a prednisone count down—5 day’s worth. Ran out yesterday.


Which means that today the swelling is returning, and the masses around my jaw and tongue are getting painful. Which means that a lot of even the softish gunk I’ve been managing to eat all weekend is too harsh to deal with. So for supper tonight? A little pot of instant grits, cooked in chicken broth, with an egg stirred in and a couple slabs of Velveeta melted on top. Breakfast…or dinner…of champions!


Oh. The needle biopsy they took at Hopkins on Friday night turned out to be malignant. I spent a chunk of today stuffed into a CT tube after being stuffed myself via forearm veins with radiolabeled sugar so the PET scan can show the doc how deep and how far the cancer has reached. Stand by for more details—I’m expecting to be tossed into the oncologist’s tank tomorrow. 


And if you have a moment, don’t forget to surf on over to the other nodes in this weblog communicosystem:
• http://docviper.livejournal.com/
• http://theresaturtleinmysoup.blogspot.com/
• http://sustainablebiospheredotnet.blogspot.com/
Thanks!

It Might Get Messy

It is not easy to go one-up on the American Heritage Dictionary of the English Language, Third Edition, 1992. But I have done so. The word is “bung”. According to the AHDEL 3rd, “bung” means a barrel-stopper or the hole it fits into, or tossing, flinging, injuring, or damaging. The AHDEL 3rd does NOT list “caecum or blind gut of cattle”. But THAT is the use I intend here. For your interest, I have the term “beef bung” in my vocabulary because of extensive, if casual, reading of cookbooks and food preparation manuals. Beef bung is a high-quality, and highly desirable, sausage casing. Some (real) bolognas and mortadellas are made in beef bung casing.


For this recurring blog post series, I wanted to use “Bowels of the Beast”, as a play on “Belly of the Beast”, paperback bestseller by Jack Henry Abbott whose release from prison was championed by Norman Mailer. Who later disavowed any knowledge or action when Abbott stabbed a guy to death a few months after he got out. But Scandinavian grunge-punk kids (and my favorites) The Raveonettes already used that. 


Then I decided I liked the bung-as-blind-gut nuance, and that’s where I was gonna take you.


So to speak. I finally decided that either would have been too pedantic. My primary chain of thought the past couple of days has been “ooh, this could get really messy”. 


So here we are.


I seldom have contact with what we laughingly think of as a health care “system” here in the U.S. You might recall some fun postings from my gall bladder excision a few years ago. Other than that, I’m usually involved for routine shit—blood pressure, blood sugar, prostate check. Today I got my first taste of “real” health care. The day ended +1 in favor of the Health Care System, but it started out several down. Here’s the deal… .


Got swollen glands. Now having trouble swallowing. Make a same-day with my GP, a sharp and rational gentleman who I trust. He palpates the glands, says “whoa, hang on a sec” and runs—I swear—upstairs to the nearest Eye, Nose & Throat specialty shop. The ENT says he can take me in a week and can recommend somebody else. My GP rattles him enough to commit to seeing me after the ENT finishes his day.


I go up to do paperwork. When I fill it out, the admin ladies tell me the doc’s day is booked and I’ll have to come back Friday. I miss the easy disconnect, thank them rather icily, and head down to find some wi fi to locate another ENT. Turns out, though (and this will be a consistent theme), the doctors made full professional and personal commitments to each other (basically my guy called in a big favor on my behalf) but didn’t tell their staff (remind me to tell you about a CEO I worked for once who regularly promised a cyclically unhappy client that we would damned well transform ourselves into the “best damned consultancy he [the client] ever had”. Then, when said CEO would return to his desk via the next day’s flight, he wouldn’t tell anybody what he’d promised or what was needed to do the job. I only found out about it because I took him to lunch once to get a read. Same syndrome here). 


So I go back that evening. The guy pokes around my mouth, throat and ears, does some endoscopy (not easy given my seriously and repeatedly deviated nasal septa). Excuses himself. Runs—I swear—to his office to phone Johns Hopkins to get me into their ENT system that night. No response. Eventually, he faxes a scrip to the doctors who are his best buddies there (I have a copy, it reads “Please diagnose and treat throat mass”), leaves vmail messages telling them to see me the next day, and sends me on my way.


Next day I call Hopkins. The administrators tell me they have the scrip, but nothing saying I have to be seen that day and that none of the doctors are working that day anyway so I can’t be seen. I tell the admin ladies that my doctor told their doctors I had to be seen today. They check. Sure enough, again, the docs had connected but completely bypassed their fortress walls.


Now I am impressed. An outstanding Internist sees me for a good 45 minutes, finding out some things I wasn’t aware of. Followed by the senior doc, a young guy with joint appointments on faculty and at the hospital.


They palpate my mouth, ears, and throat. Do some endoscopy. While they’ve got my internal workings up on the screen, I ask them if they can take a couple of still shots for me. The doc says “no, software can’t do that. But wait. Do you have a flash drive?” Of course, I have a couple of 8 gig drives in my bag. He gives me the entire video!


On which, and here’s the punchline for this entry, he has pointed out 3 masses. One looks compelling and frighteningly like your stock photo idea of a malignancy. The others are less obvious. The doc takes a needle biopsy of the one mass he can reach. But he clearly believes that all 3 are malignant.


And I thought I had a strep throat and swollen glands… . 


PS. If you have a little time available, please surf on over to the other components of this weblog empire:


http://docviper.livejournal.com/


http://theresaturtleinmysoup.blogspot.com/


http://sustainablebiospheredotnet.blogspot.com/


And thanks for stopping by!