It is an incredible, awesome, damned near unbelievable time to be alive. On Thursday, the imaging technician handed me a CD on my way out the door. Actually, he handed me two CDs. One was the audio track he had playing while I bounced back and forth in the scanner. On the way in he asked me what kind of music I wanted. I told him Scandinavian death metal. He said ok. Then he said he lost that tape but he had some good dinosaur rock if that would suit. Stevie Ray Vaughn and Kenny Wayne Shepherd together blasting some seriously slick electric blues. I have no idea why the guy was so insistent that I take a CD of the stuff he played as background music while he did his job. But what the hell. It’s good music.
But these are not the droids we’re looking for. The astonishing CD is the one that has 239 computer aided tomography images of my body on it. These are 239 transverse slices of me from roughly hips to skull. There are sagittal and coronal planar views as well, but these are for navigation. In fact, they generate a cool set of 3-D figures that let you click on any location you want to see the detailed information. The heart of the matter…the meat, so to speak…is in the transverse sections. There seems to be about a meter of me in total in the images. That makes the resolution of the transverse slices better than half a centimeter. I imagine there are possible tumors smaller than that. But half centimeter resolution via completely nonintrusive technology (except for the radiation that of necessity is at the base of the imaging) is pretty damned comforting to me.
Before they passed me into the imaging machine, they did an intravenous injection of fludeoxyglucose. Which is a radiolabeled analog of glucose sugar. The radioactive moiety (now THERE’S a word you don’t see very often) allows a positron detector (PT scan) to pick up the places in my body that are most metabolically active—places that take up the sugar rapidly and massively. Simultaneously, they recorded x-ray computed images—CT scans. In roughly half an hour they sliced me into 239 conceptual segments and recorded two high resolution images of each slice, one PT, one CT.
Then they burned me a disk with the image data and the software necessary to process the images. Oh yeah. Plus the Kenny Wayne Shepherd disk.
Anyway. A few years ago, the hardware, software, ethical, liability, legal, and social contretemps associated with handing a patient a package of kick-ass diagnostic material on his own condition would have tied the system up in knots. At GBMC on Thursday, they just handed me the disk with a smile. At home, my computer recognized it, loaded up the data, accepted the software, and let me dissect myself 239 * 2 times as often as I want to. Is this a wonderful universe or what!?!?
In Manhattan, east and south of Madison Square Garden and Penn Station, around 30th to 33rd streets, there is a string of Korean hotels and restaurants. This is not a tourist neighborhood. There are no “little Korea” shops. This is a hard-core Korean language business neighborhood. There are few Anglos in the restaurants. The wait staffs don’t really like to serve white people.
In the 90s, I braved the gruff and uncomfortable service to eat in those restaurants a few times. There are no menus in English, and the staff offer no help when they hand you the menu card in Korean. It has only a few items on it. I simply pointed at random at what seemed to be main dishes and awaited my fate. All the food seems to be variations on the same theme. You get a cup of soup, then a plate of kimchi and one of pickles. After a while, a bowl with bright and crisp whole lettuce leaves is set out, followed by a huge platter. The platter contains a veritable museum’s worth of laterally sliced organs. All kinds of organs. From all kinds of animals. I’m a Ph.D. biologist, for crap’s sake, and I couldn’t identify the phylum most of the organs came from, much less what the organs are. The idea is you roll up some of the organ slices in one of the lettuce leaves and eat it. The exercise is of more biological than culinary interest, I must admit.
I’m reminded of those restaurants when I sort through the data on the PT/CT data CD. Let’s play “Name That Organ”!!!
Let’s start with slice number 126. Low down along my back, you see the paired kidney shapes of my…uh…kidneys. They’re hot with radiation. They are metabolically active, doing their kidney thing, separating the salvageable and useful from waste liquid and passing it on to the bladder. To the left and above the kidneys is the generally well-lit mass of my liver, sequestering or detoxifying potentially destructive molecules—including the radiolabeled sugar, I presume—at its plodding but effective rate.
Wanna see my heart? Slice 155 here runs right through. Four chambers and some chemical glow—hard working heart muscle.
Now, let’s go to the crux of the matter—the base of my tongue, where the primary tumor was and presumably where the potential for formation of new tumor tissue is high. This is slice 203. You can see the void of my windpipe, forward of that the mass of my tongue. I think what we’re looking for is small, single, hotspots—that is, unpaired. The paired spots mostly match up with anatomical knowns. I suppose it’s not impossible to get paired tumors, but I’m relying on the docs to know the wheat from the chaff in that context. I note that the software comes with a helpful zoom function in the icon of a magnifying glass, but I haven’t figured out how to capture the zoomed image in a jpeg. But in fact you can get the important stuff from this figure. No oddball unpaired hotspots. Thus, no visible tumors.
That’s the punchline. The radiation oncologist called on Friday to say the PT scan output is “fabulous”. Quote. This is the big-personality Romanian woman, who takes no prisoners and offers no bullshit. Especially she doesn’t do premature or unjustified positives. So I’m taking her at her word—fabulous it is. I believe that means I have only to get through some pro forma surgery (the team meets on Wednesday to discuss active cases, I expect they’ll propose a scope and date for surgery then and call me afterwards) and the difficult discipline of getting over my incredible weakness and regaining my strength—pretty much on me, I’m afraid, and you know how “Mr. Discipline” I am—and I should be back to full health a year later and a shitload wiser.
We’ll see.
Those of you with a weak stomach or delicate constitutions should turn away for just a few seconds now. That heavy dark streak low in my torso in all those 3-D images? Fecal mass, awaiting excretion. Oh well. My only actual innate “skill” is taking a good dump, no reason detailed whole body imaging shouldn’t pick up on that theme!
Anyway. There’s a new short essay up at http://theresaturtleinmysoup.blogspot.com/, the other sites— http://docviper.livejournal.com/ and http://sustainablebiospheredotnet.blogspot.com/ have yet to be updated. Thanks for stopping by!
It Might Get Messy
But not as messy as it might be. In another universe, my life ended decades ago on a hot sunny day in a rice paddy in South Vietnam.
That universe is not so far, probabilistically, from this one. I’m pretty sure I’ve been there. Sometimes late at night I feel that warm water—just a couple inches deep—on the right side of my face. My nose is out of the water, against a muddy bank overgrown with wiry grass. I smell the mud—it’s clean, not anoxic, highly organic, promising a good season’s growth. But not for me. That warm, fragrant wetland smell is embedded deep in my subconscious. There is something eternal about it. It’s part of the greater complex of universes that this one is a slice of.
I’ve been watching an excellent series of films National Geographic has compiled on the Vietnam War. Have you seen any of it? When the narrative begins each episode, you think it’s going to be another yahoo revisionist attempt to justify that idiot episode in history, and there is some of that. But the writers catch themselves every time, and end up telling largely the truth—partly because about half the time is spent on interviews with survivors, and that perspective—whatever it is for each individual—is truth by definition.
I wonder what the difference is between that universe—where I am dead before I’m 30, before my parents, without kids of my own and before my life was really engaged—and this one, where, I’ve hung on long enough to contract a life-threateningly acute cancer and fight it to a standstill.
I suppose the easy—and most likely—answer is nothing. There is no imperative, no endpoint, no direction, no morality to reality, and a richer universe (at least from my perspective and the perspective of those I’ve known and will know) has no more inherent value than a poorer one.
But I’m not sure I buy that. I’ve come to envision a spectrum of consciousness that is inherent in matter—in being in general—and is not unique to life. Think about it. The earth is “conscious” of the moon and the sun via gravity and radiation. Qualitatively, that is not particularly different from our intellectual consciousness that works off the same basic forces and processes it through an additional mental network of electromagnetic and chemical signal management infrastructure. If that’s true, then life may just be one middling endpoint in a never-ending seeking by “being” versus “nothingness” to acquire, configure, and disperse energy at the greatest possible rate (Ilya Prigogine’s hypothesis that evolution is an endeavor to disperse ever greater quantities of energy). I’m not, ultimately, certain why or how that “desire” should be built into the laws of physics. But if it is, at least it gives a direction, focus, and meaning to being.
And what that means is, that learning—acquisition of understanding—is the simple imperative of life. Could be worse. Let’s learn something about the infrastructure of the human throat.
I slurped the above anatomical diagram from the web. Note the relative placement of the trachea—pipeline to the respiratory system—esophagus—pipeline to the gastrointestinal system—and the epliglottis—gateway to both. That nexus is a focal point of my present difficulties.
Nurse Bethany, agent of the GBMC study of swallowing in throat cancer patients, is the best for many reasons. Not least, she sent me a nice series of stills from my last project appointment.
Look just to the left of my spinal column. The dark rectangular mass at the base of my tongue is a glug of thin liquid dyed with the barium tracer. The dark trickle running down parallel to my spine into the dark nether regions of my chest is the little bit of liquid that my damaged epiglottis lets slide down the “wrong” pipe, into my trachea. This is apparently classic for people in my condition and is often problematic. It seems odd that I, who wrestled with acute asthma, bronchitis, and pneumonia for decades should have no fallout from this rain of superfluous liquid into my breathing apparatus. But my mucous membranes and affiliated ranks of cilia seem to deal with it just fine. I have had no respiratory issues to date.
The image immediately above shows the black bolus of a pudding-textured formulation of imaging compound, smeared on a cracker. I bit off a corner, chewed, and swallowed. The swallow was largely ineffective. That black bolus is post-swallowing, stuck right at the entrance to my throat.
Here you can see that the food blockage is broken up. Nurse Bethany’s given me a sip of water, and that has helped mobilize the goop and let it slide down my throat.
Apparently, there is no way to know at the moment whether the damage to my epiglottis is permanent. Bethany says sometimes it is, sometimes it isn’t. But, in her experience, people who have the inflamed mess that I retain from the radiation therapy eventually heal to swallow and speak close to normal and with little discomfort. I sure as hell hope so. I’m certainly chronically uncomfortable at the moment!
Hopefully we've all done our part to pump more highly ordered energy into the Big Black by learning this bit about human throat functioning in general and my own contretemps in particular. Hell, since we've made that contribution, I suggest we collectively take the rest of the week off to relax and play some good music.
Anyway, thank you all for being here. I have not updated any of the other web logs in this suite, for that I apologize. We spent the weekend moving Colin into his apartment in Atlanta adjacent to the Georgia Tech campus, so I’m a little behind. But I treasure these blogs, and I am deeply grateful for all of you who schlep over to read this stuff. I’ll post a notice here when I update the other three sites. Have a good week, all. Oh. Next week should be pretty cool. I go for my pre-operation PET scan on Thursday. Hopefully I’ll have some images of any residual malignancies and the ongoing horrific inflammation that I’m still fighting. Rock on, all!
I have a physiological update for you. But first, let’s deal with some of the psychological, emotional, spiritual fallout.
When I was first diagnosed, and the treatment plan was laid out, it seemed that cancer was a threshold event in life. That there was “before cancer”, “after cancer”, and that the treatment would be a trip through a tunnel between the two worlds. Nothing would be the same once I came out of that tunnel.
Well, that turns out to be pretty much true. But somehow I think I expected the world at large to be different at this end of the tunnel. What, in fact, is different, of course, is me.
A few evenings ago I finally resolved a weird gnawing at the base of my psyche. It’s gonna be a little hard to make this coherent, but I’ll give it a shot. It turns out, I’m the wrong person. Which, of course, begs the obvious question “for what?” Well, I think I am the wrong person for this place, this time, this corpus. I feel displaced in my own skin.
This wrong place/wrong time thing has been with me my entire life. Sometimes it is strong and worrisome, mostly it is just a background buzz. But here at the after-cancer portal of the Tunnel of Life, it seems to have settled in as a load-bearing component of my foundational infrastructure.
It is not uncomfortable. This isn’t another weak-willed-bozo-with-the-low-threshold-of-pain whining thing. It is a fact of life that has been part of me forever, but has finally claimed its place as a meaningful brick in the wall. I know how weird that sounds. After all, I’ve lived in the same place, with the same people (swapping out only a succession of canines), for 25 years. I’ve had the same avocations, I realized this week, since my childhood. It was just a blip of child-rearing that occasionally interrupted my predilection for disappearing into temperate woodlands under the excuse of seeking pit vipers to commune with/photograph. I still paint, write, make music, take photographs. And yet I’m doing it all as a road warrior. I am not “home”.
All this sounds bleaker than it is. In fact, midweek, I had something of a revelation. Late one night, I found myself thinking that I was completely at peace with myself and my world. That I was happy, comfortable, competent, without need. I have not felt that deep a contentment ever before. But there it was, around midnight on Friday.
So there we have it. I’m homeless, but happy. And it took the colossal battering of cancer and cancer treatment to make that clear. Weird, no? But don’t ask me. I’m just the reporter, the inquisitor, the seeker, the messenger. Nothing to be gained by blaming me for the truth.
And what the hell triggered this quasi-mystical bit of self-discovery? Well, I’d like to blame it on staying up late watching first “Predators” and then “Pitch Black” with Vin Diesel (great movie, BTW. The visuals are stunning and worth the price of admission all by themselves). But I think it climbed aboard as many threads of cancer uncertainty came together this week.
Should you find yourself facing serious illness, I highly recommend signing up for whatever funded studies are being conducted by your doctors and their institutions. For one thing, most of us reading this weblog (certainly those of us WRITING it) are grossly overeducated, and one way we can help make amends for taking more than our share of education out of the system is by acknowledging and responding to the need for experimental medical subjects. More importantly, you will learn things your day-to-day medical team may not think useful.
I’m signed up for two studies. One regarding swallowing after the devastation of throat cancer radiation therapy, the other regarding possible interactions with flu vaccine. This week I went in to get blood drawn for the latter, and to do the barium-illuminated imaging of me swallowing various textures of foodish substances (thin, thick, and “paste on a cracker”) for the former.
The nurses reinforce what the surgeon told me the week prior. That my throat infrastructure is still all screwed up from the radiation. The swallowing nurse shows me how my crippled epiglottis is trying to function, but letting a tiny fraction of each swallow run down the windpipe instead of the GIT. Points out that my inability to form a functional food bolus in my mouth is due to my tongue still being displaced by the radiation-induced inflammation. She is worried that the epiglottis thing might be permanent, but thinks that when my throat finally recovers so it isn’t lined with a crust of inflamed, mucous-starved (because my mucosae were destroyed by the radiation) immunoresponse tissues that it will be a very minor issue in my oral-pharyngeal functioning.
I hope so. Because she also says her experience (she’s a little older than most of the medical players in this soap opera—younger than I am, but way older than my surgeon and might even have a year or two on my radiation oncologist) is that the intense two-a-day radiation exposures my therapy involved require six months to a year just to recover from the basic devastation. And that my struggle to keep my weight up is fully to be expected. Over all, she thinks I’m looking good and doing well. Says there’s nothing to do but live through it, and that I should be grateful for being able to do the “living” part of the exercise.
Indeed. Coupled with my new-found contentment with my out-of-place place in the universe, I’m feeling pretty damned good about things. I’ve walked a fair chunk of the distance out the dark trail to the end, and managed to make it back intact (so far). I’m still alive to live through. Life is funnier and more complicated than it’s ever been. And I’m here to laugh. There is a light side to existence, and I’ve parked my butt square on top of it. Turns out, you don’t have to be darkened, downtrodden, and confused to be existential. You can be happy, even if you don’t know where you are and you spend most of your time just watching life happen in front of you. You can learn, you can grow, you can laugh. Maybe every place and every moment is “right”, and there are no wrong ones. Judging by me, that’d be true.
Apologies to all for the weird existentialist meandering. There’s some nice new photos up over at http://docviper.livejournal.com/ , the other sites http://theresaturtleinmysoup.blogspot.com/ and http://sustainablebiospheredotnet.blogspot.com/ will be updated later in the week. And thanks for stopping by!
I don’t know how messy things are for Michael Douglas at the moment (a nice piece built around his throat cancer, which is remarkably similar to mine and seems to have been caught at the same Stage IV status is available at: http://www.webmd.com/cancer/news/20100901/throat-cancer-faq?page=3). I know my messiness is stretching out way longer than I expected it to.
I saw my surgeon this week. Actually, first I saw his stunning, if possibly anorexic, Pakistani intern. She had wonderful hands. Dr. H let her do the endoscopy, and it was far less uncomfortable with her doing the driving.
The endoscope is cool. It’s a pencil-thin flexible cable with a light and imaging camera on the open end. It plugs into a dedicated chunk of imaging hardware, which in turn runs to a hard drive for storage. Basically, it’s a microcamera in a compact, easy-to-use unit. While waiting for the docs, I started looking online to see where I could get one. Can you imagine the cool digital photos of ants in action, mites, centipedes, face-to-face with ringneck snakes? Too cool. But too expensive. Via eBay, I could put together a functional suite of hardware for about $5K.
I mention that “I want one of these” to Doctor H. He says he wants one also but the outfit in the examining room cost on the order of $15K. Then he says, “you know, I walked into CostCo last week and they had one for sale for $150. The camera cable is a little thicker, but it’s sturdy and easy to hook up. It’s made for automobile diagnosis and repair.” Holy Hell!! I didn’t make it to my local CostCo this weekend, but I will this week. Expect really nifty photos of soil mesofauna to start showing up over at docviper!
Anyway, where were we? Oh yeah—fantasizing about the slender, smooth-skinned doctor. In sequence she, then a young oriental graduate student, and finally Dr. H all palpate my throat, jaw and ears (!) and peer inside, manipulating things with wood sticks or holding my tongue rather painfully in the grip of a big gauze pad. Turns out my throat is STILL devastated by the radiation, too raw and inflamed to make an immediate PET scan productive (the inflammation will take up the radiotracer as eagerly as any remaining malignant tissues, mucking up the focus of the follow-on surgery).
I report that I am having a hell of a time trying to maintain my weight—my swallowing remains awkward, and it is difficult to get enough calories orally. And when I do get some calories by mouth, I feel so full that I can’t bring myself to top up with canned UN emergency rations via feeding tube. So I’m losing weight and getting weak. I was trying to keep myself at 200 pounds, but I went down to 189 last week and I’m now averaging about 195. Can you imagine someone my age, or me in particular with my lack of self control relative to food ingestion, having trouble keeping weight UP? Just another in a growing suite of ironies accompanying cancer! In the waiting room, several of the nurses who worked with me during treatment stopped by to say hello and offer advice. They have a weirdly schizophrenic relationship with Gatorade. Some of them recommend using it in place of water because it will provide calories along with simple hydration. Others advise eschewing it (nice word, no?) because of the high sugar content. I’m goin’ with the calories at the moment.
I also tell the docs about this weird cycle of pain of weakness I’ve fallen into. About every four days, I have two or three days where I’m incredibly weak, my joints and muscles hurt universally, and I can’t get any sleep. Then I pass out for a sequence of long, long sleeps and feel better. Then, a few days later, back into the meat grinder.
None of them have any idea. This cyclical thing is completely outside their collective experience and the lore of cancer treatment and recovery. They have nothing to offer by way of help.
But. At least my continued illness isn’t some kind of idiosyncratic malingering. Dr. H schedules my PET scan for the last week of August, to give the still manifest inflammation time to subside. At that time, he’ll schedule surgery, presumably in September, to remove the chicken-fried residue of my oral lymph nodes and any remaining malignant tissues. I can hardly wait.
There’s a new and interesting essay up at http://sustainablebiospheredotnet.blogspot.com/ . Well, at least I think it’s interesting. I’m writing a piece a week on the environmental consequences of armed conflict, hoping to have enough material to compile the first of several books and go to press before the spring semester. I have not updated http://docviper.livejournal.com/ or http://theresaturtleinmysoup.blogspot.com/ so if you’ve been over there recently, hang on until I update next week. Thanks for stopping by!
Oh. If anyone knows someone who knows Michael Douglas, go ahead and pass the weblog address along. Maybe he’ll get some humor out of it.
