It Might Get Messy
Our high school football center…let’s call him “Reg”, since that’s his actual name…had knee trouble one season. He developed this huge, basketball-sized hematoma over his right knee, a big, blobby sack full of body fluids. No other real problems—his knee was structurally sound and pain-free. He just got this big bag o’ goop over it periodically. To prep him for games, some of us took to getting to the field house early on Saturdays to help stick the needles Doc K gave us into the hematoma and squeeze the bucket of blood out before we taped everything up for the game.
Per the title, things here in CancerLand are indeed messy. Again. The photo below
shows the enormous volume of lymphatic fluid being drained from the reservoir in my leg where they harvested the abortive tongue-replacement muscle. They could install a permanent drain, which I would have to empty several times a day. Or, we can just let it build up to this couple-of-liters level and empty it whenever I go see Dr. H. Which is where we’re goin’ now.
At the moment, that’s the least of my problems. After letting the available information sink in, and listening to the Be Good Tanyas sing “Waitin’ Around to Die” a couple dozen times, I have opted to put myself back into the ovens and go for the full course of radiation and chemotherapy. Once I cut the doctors loose, they were like a pack of hungry huskies waiting for the washtub of frozen herring to be thrown out the back door of the yurt. Wednesday I let Dr. H know I was ready to face the fire. Today they stuck me in a CT scanner, heated up a full-size mesh head-and-torso blank, laid me down, and bolted me to the table while the hot mesh roasted my skin and cooled into my shape. I prevented myself from having a screaming claustrophobia incident by remembering that on Monday I have to face a full size/full time MRI. That’s the one where they stick you in a powerfully magnetic test tube and monitor density differences at a millimeter scale from head to torso. It is almost the definition of claustrophobia.
I forgot how terrifying this entire experience was last time. And how dangerous. Dr N enumerated potential downside effects, reminding me that jugular veins are at risk (last time they cooked my left jugular, had to restore it surgically with massive loss of blood), and that my spine is in the line of fire. It doesn’t take much radiation to burn the spinal cord itself beyond physiological effectiveness.
And it goes on from there. And of course you have to add the weekly chemotherapy infusion to the twice-daily radiation burn when summing the grim and painful downsides. Damn, those radiation burns sting like a son-of-a-bitch once they form, and they take forever to subside. In fact, in some cases they may never subside.
So ok, the upshot for this week is that I am about to go back into the deep, deep shit, hoping for that tradeoff kicking a now weakened and diffuse tumor while it’s down and running for the 30% potential for full recovery. The doctors are confident. I am terrified. The radiation is what it is—a dangerous but potentially miraculous tool in the hands of experienced tradespeople.
If nothing else, I should at least have mildly humorous blog entries for the foreseeable future. These treatments are going to go on for a while. Meantime, remember to surf on over to http://www.aehsfoundation.org/ for the professional blog on sustainability, and its weblog empire companion http://sustainablebiospheredotnet.blogspot.com/ . At http://docviper.livejournal.com/ there’s a short draft of chapter 7—7th Street—of the urban ecosystems book. No new material up at there’s a turtle in my soup. Expect the entire weblog empire to start to fill up now that spring is here, though!
Love you all, my friends. Apologies for putting you through the whining of another round of radiation treatment. But that’s where we’re going. I’ll be thinking of you as they apply the radiation beams, and hoping they’re getting them into the correct tissues!
Question: how is the U.S. Civil War like cancer? Answer: Stonewall Jackson. Consider.
Information is important. Really important. Good decisions don’t get made without good information. You can’t fight effectively in a clichéd “Fog of War”. And nobody illustrates this with more comic panache than Thomas J. “Stonewall” Jackson, former VMI professor turned fire-and-brimstone preacher who believed that Satan himself led the Yankee cause.
Jackson got his nickname at First Manassas. As the confederate lines broke around his position, he stood at the head of his unit and gave the retreating men a rallying point. It was noted by cynics that he might have been standing like a “stone wall” out of dim sluggishness, but the legend lives otherwise. Over the next two years (give or take a couple zone-outs when he acted more sluggish than courageous) he became one of Lee’s most important and effective generals. Then at Chancellorsville, Virginia in 1863, Jackson and some of his officers rode ahead of their own lines chasing the damned (literally, he believed) Yankees, and he was shot by his own sentries on his return in the gathering darkness.
Even in this abbreviated version, it’s clear there were way too many people taking too many actions on the basis of too little or too lousy information.
I bring this up because I met with Dr. T today. Her read of the same scan I gave you a still from last entry (that scratchy, “non-tumorish”-looking chunk of my throat) is that possibly the tumor material itself, and certainly its malignancy, has shrunk since the prior scan. Doc T takes this as good information from which to conclude that radiation has a better chance of success than we believed just a few weeks ago. Acknowledging the nightmare side effects, Dr. T thinks the risk balance may have swung across the abyss to the “active treatment” side of the wheel.
Not wanting to fall into that trap of under-interpreting available information or not seeing important interstices, we asked Dr. T to confer with Drs. H and N and give us some recommendations and thoughts. At least at that point we’ll have a basis to talk, and a basis that is the first hint of optimism in this case for a long time.
We’ll see. There’s a tendency to see optimistic information as more reliable (for obvious but faulty reasons) than pessimistic. So I’m not jacking my hope-o-meter too high on the basis of this conversation. But I’m letting it look over in that direction.
Just in case, I got some extra pain killers to back up the short-term dilaudid with some longer-term morphine patches. At least I’ll have enough meds to keep writing as long as possible!
Remember that over the weekend I’ll update my professional weblog at http://www.aehsfoundation.org/ (go to lower left on home page and click through to sustainability weblog). I give you a second shot at that piece by reprinting it every week at http://sustainablebiospheredotnet.blogspot.com/ . Also, now that spring is here, I want to get more of this weblog empire back in action. Here’s what I’m gonna do. Even BEFORE I went to see Dr T for the positive spin session, I’d test-driven my ability to crank out chapters of the Urban Ecosystems book that went on hold when I was originally diagnosed. Turns out the creative concept—short, to the point chapters of about 1000 word per—is perfect for how I can most effectively write now anyway. I figured if I could live 12 of the 18 outside months they gave me, I could finish that manuscript. Well, I now believe that even more strongly. So, over at http://docviper.livejournal.com/ I’m going to post chapters (no matter how drafty) of the Urban Ecosystems book along with the week’s photos from my rehabilitation hikes in local woodlands and parks. Finally, I’m going to get my artistic ass back in gear at http://www.theresaturtleinmysoup.blogspot.com/ and post literature, music, culture, food and food-related materials. Basically, by this Sunday night (that is, night of 21 April), there will be new material posted around the horn on the weblog empire. If you have the time (or the willpower), check ‘em all out. They’ll be running weekly from now on, if I remain as strong as I seem to be at the moment.
And remember, my friends, everything word I’m able to type out is a testament to your love, friendship, encouragement, and great good humor. Special shout to Dave M. this week for the great guitar letter, with a kicker reminding him that it was me, after a trip to Oahu when I managed to find the best local used CD shop in lieu of the actual conference, who introduced him to Hawaiian Slack Key style guitar. Love you all!
No matter what your southern friends tell you, Sherman’s march through Georgia and then back up the Carolinas and Virginia ended the war much sooner than it would have otherwise (Jefferson Davis was a nut case who would have kept the idiot slaughter going for years), and cut the casualties and costs enormously. Same situation pertains to the use of nuclear weapons at the end of World War Two, but that’s not why we’re here.
We’re here to consider the abortive southern response to Sherman’s devastating vacation through the deep south. Lacking soldiers for home defense, and infrastructure that could be crippled to slow the Union armies, the Confederates turned to land mines. They called them “torpedoes” in those days [1]. They were explosive charges set under pressure plates, so when the Union columns walked over them, the charge detonated and death or destruction resulted. It took Sherman and his officers about an hour and a half to realize that if they marched the southern prisoners of war ahead of the Union troops, the effectiveness of the “torpedoes” would be rendered moot. So it was. Sherman sent word to the southern officers that POWs were the first to go, and the “torpedoes” simply stopped appearing.
I bring this up because causes of death do not have to be obvious to be effective. For example, we usually think of a malignant “tumor” as a kind of blob, an obviously visible, more-or-less egg-shaped, scary-looking growth attached to some part of the body.
Such well-formed tumors are often easily removed surgically. But not all “tumors” look like tumors. My own tumor, for example, or as I like to think of it, my Death Star, is actually just a rough spot on the palate or upper part of my throat. It’s sort of a reddish, inflamed, nasty looking surface on the throat membrane. Here’s what it looks like.
See, it’s just a diffuse, surface-marked, set of lines on the mucous membrane of the throat. No real “tumor” shaped thing. Nothing to go in and remove surgically without hacking out huge additional volumes of tissue in the palate and sinuses, leaving me pretty nonfunctional.
And there you have it, sports fans. A rough spot on my throat has the super incredible power of either of the Star Wars Death Stars. Apparently without the “hit me here and I explode” button that the Empire built into both Death Star versions. No, my friends, this picture tells the story. Sometime within the next year or two, this inflamed spot on my throat is gonna kill me. And there’s not a damn thing that can be done about it. Except this. I intend to cook some of the most delicious meals you ever tasted between now and the date this thing croaks me. So get your taste buds ready, my friends. If I HAD any taste buds, I’d be getting them ready. But don’t worry. I can function without them. I’m gonna cook you guys some of the finest food you’ve had since…well, since the last time I cooked for you! I can’t wait!
PS—note tomorrow I’m going to update my professional weblog at http://www.aehsfoundation.org/ . Go to the lower left on the home page and click through to the blog, or go directly there via http://www.aehsfoundation.org/peoplesystems.aspx
Remember everybody, I’m here for you. Until I’m not here for you. Which will hopefully be further in the future than it seems like it might be at the moment!
[1] Shelby Foote. The Civil War Narrative. Red River to Appomatox. 1974. Random House.
Ulysses S. Grant chain-smoked cigars. After his presidency, he contracted aggressive, advanced and untreatable throat cancer. His family was relatively impoverished (being President wasn’t a road to wealth in those days, apparently), and by way of leaving something tangible behind, he contracted on favorable terms with Mark Twain’s publishing house to produce his memoirs. Note Twain’s personal altruism—he offered such excellent terms because he didn’t want the Grants to be poor [1].
A couple of doctors were assigned to see Grant at least twice a day, with the objective of keeping him sufficiently functional and pain-free to finish the manuscript. A team of researchers was provided. Grant dove in and started writing. Towards the end, he was alternating doses of cocaine and morphine but still moving forward. A few days before he died, he handed Twain the manuscript.
It was an enormous literary and financial success. The Grant family was solvent, and the critics raved. A seriously workmanlike way to end an extraordinary life.
I wish I had that kind of single-minded purpose, that drive, that desire to leave a meaningful legacy. But this is me we’re talking about. Lazy. Lumpish. Procrastinationary (word?). Generally, I LIKE sitting around picking at my guitar, making bad art work from sketches and cut paper, writing bad poetry, hiking, and taking bad photographs whenever possible.
All this is preliminary to the real message of this entry. I met with a whole round of doctors this week, both before and after I was admitted to the hospital on Tuesday because of rather spectacular bleeding. The message from my radiation oncologist was this: “You need to start having fun. It’s time to fuck the rest of it”.
And the reason he gave me this message? He figures I have 6 to 18 months to live. The tumor now residing on my palate will grow and become painfully symptomatic in 3 months, and after that it’s just a matter of time. Of course there are a million alternate possibilities and pathways. But the medical profession’s best guess is that by Thanksgiving 2014 I’ll be dead if given only palliative (symptomatic) care and pain management.
Beyond that, things don’t look much better. Apparently focused radiation is feasible, but it has only a 30% chance of controlling the tumor, and will itself introduce around a 10% chance of immediately fatal side effects. Radiation would be accompanied by chemo, which will have its own very discomfiting impacts on my physiology.
At the moment, I’m not sure what I’m going to do. If I opt for active treatment and it works, I’d be trading 6 months of post-radiation hell (just like last time) for a cancer-free future. But that’s only a 30% chance of success. If I opt for active treatment and it fails, I’d be taking the last year of my life and turning it into radiation-sick hell to no purpose.
Right now, I can think, write, “talk” (various technologies), play guitar, cook, and do work, including writing a book on urban ecosystems and returning to professional work for my company if they want my help. If I continue to be able to work, I’m tempted to just let the disease run its course and opt for hospice care and serious pain control at the end. But, as I say, all options are still on the table.
That’s it from here in The Land of Good News. I suggest you switch over to the “all bad news channel” for some really gruesome perspective!
In the meantime, my doctor’s advice is good for everybody at every time. “HAVE FUN. FUCK THE REST OF IT.” You only get one shot at life my friends. You can learn from my experience. Wring as much out of life as you can while you can. That way, you won’t have any real regrets when the jet engine falls out of the sky onto your bed.
My love to you all. Tomorrow I will update my professional weblog over at http://www.aehsfoundation.org/. Go to the lower left on the AEHS Foundation home page and click through to my sustainability weblog, PeopleSystems and Sustainability. Have fun, everyone. Ask any questions that come to mind. I’m looking forward to hearing from you and seeing as many of you as possible before I’m toast. Got a good year-and-a-half left to accomplish all that. Or, we could all rent the movie The Guitar and hope my tumor disappears like hers did. I’m good for that!
Notes
[1] Waugh, J. 2009. U.S. Grant: American Hero, American Myth. University of North Carolina Press, Chapel Hill.
One of the odder sights in contemporary Americana can be seen via an easy car cruise along the streets of suburban New England during late winter, say any time during February, depending on weather patterns. Generally, days start to warm but nights remain frosty. Under these conditions, trees start to think about sprouting new growth. To do so, nutrient-rich stores of last autumn’s sugars and starches need to be translocated from the roots to the shoots. In certain species—sugar maple and Norway maple especially—it happens that sap flows daily during warm weather, running by the liter on nice days. Tapping and collecting that sap allows the production of maple syrup and sugar by a simple process of concentration by boiling.
Nowadays, enterprising cooperatives and companies “lease” almost every accessible tree in suburbia. The trees are tapped, polyethylene surgical tubing is run from tree to tree and from tree to collection points. Every day the harvest is poured off and taken to the boiling house. For a few weeks, New England looks like a network of silvery blood vessels, tubing draped everywhere:
At about 2 a.m. on Saturday night (that is, Sunday morning), my infrastructure and physiology started to emulate a New England spring. I started to drip copious amounts of blood from vessels and bodily openings for which such leakage is totally inappropriate. Interestingly, since my throat is sectioned off from my gut via a big slab of brisket, I can taste and smell my mouth filling with blood, which now (24 hours later) occurs about every half hour. So I have to pack a big handful of paper towels and spit the fresh blood to clear things out. Then I cough and blow the blood from my airway out the tracheotomy tube. Then I pull the tube and empty the blood with which it is filled. This now has to happen on around that same 30 minute schedule.
Good thing I’m going to see the doctors tomorrow. One’s a radiologist, of course, not a hematologist. He’s going to give me some thoughts on possible treatment options and non-options. In the afternoon, I go see the hematologist to figure out what’s the deal with all this blood.
OK. It’s now today, which is tomorrow relative to the stuff immediately above that I wrote yesterday. Let’s start with the hematology.
After a long day at the hospital, seeing 3 doctors in succession, being scoped in my nasal passages and mouth and throat several times, it devolves that the bleeding was simply a result of the anticoagulant chemicals. We figured that out by experiment. Stopped taking the warfarin and injectables yesterday, stopped bleeding today. So, given that I’m still at risk from the pulmonary embolism, we’re back to the rat poison.
Now. The discussion with the radiologist was short and bitter, although complicated. I’ll devote the next entry to what he said and what it means. I will give you the brief version here, though, so you’re prepared. He said “It’s time for you to start having fun. Fuck everything else.”
As you might expect, there’s a lot of portent here. Meantime, part of what I do for fun is write. I’m recovered enough that my weekly column at the AEHS home page is back up and running. This week’s column is about transmissible cancers in Tasmanian devils, so don’t miss it. You can go to the AEHS Foundation home page, http://www.aehsfoundation.org/ , go down to the lower left on the page, and click through to the column. Or you can go directly there via http://www.aehsfoundation.org/peoplesystems.aspx .
In any case, my doctor’s message is good for everyone. Have fun! We all only have so much time.
