Saturday, February 16, 2013
It Might Get Messy
The funniest single moment in cinema is when the shit actually hits the fan in “Airplane”. The shit is going to hit my fan on Monday, 0530 hrs. I’m sure it’ll have its funny moments. Mostly it’s going to be painful and uncomfortable.
And when I say “painful and uncomfortable”, I mean something along the lines of horrific. I’m not clear on the details, but here’s what I do know. They have the operating room reserved for the day—12 hours. There are two distinct phases of the surgery—removing the tumor, and replacing the crater where the tumor was.
Phase 1 starts, I believe, with them punching a hole into the front of my trachea and then sealing it from my oral cavity so I’ll be able to breathe while they deconstruct and then reconstruct my throat. One of the decisions they’ll make at that point is whether they need to simply remove my entire trachea and, in another more drastic (and hopefully remote) scenario, my voice box. Hopefully we can put that one off until I’m cogent and relatively free of the morphine derivatives. But it may not be possible. There’s at least a chance I’m gonna wake up without a trachea, or worse.
THAT would piss me off. But I think my physicians are aware of the fact that I would FREAK OUT if they hacked out my trachea without a good reason. So I presume they’ll have a good reason, should they have to go there. We may have to make that decision later, but at least I’ll be able to participate then. We will also decide if my throat is sufficiently functional to remove the tracheotomy, or if I have to live with THAT for the rest of my life. Oy.
Now, where were we? Oh yeah. Procedure. First, Dr. H opens my throat and cuts out the tumor. There is apparently a good deal of art involved in this. He says he feels the tumor, decides how big it is and how big it might get, then overcuts the trench in the back of tongue so there’s limited chance of leaving any malignant tissue. This is largely because we’re out of treatment options—I’m past my lifetime dose of radiation, so the next step up would be to excise my entire tongue top to bottom and any other tissues it might have spread to. We’re trying to avoid that at the moment. Unfortunately, the massive trough this is going to leave in my throat is going to destroy what’s left of my ability to eat solid(ish) food, drink without drowning, and not suffocate in my own saliva when I’m asleep. Ouch, if I may say so.
Now, at this point Dr. G takes over. He is a plastic surgeon, and his part in this physiological play is, believe it or not, almost entirely improvisational. Apparently, he looks at what Dr. H has done, and then decides whether it’s best to a) strip off a long strip of skin from my forearm with associated blood vessels, fold said skin into a shape approximating the chasm in my tongue, and painstakingly hooking up as many blood vessels from my arm to the ones now exposed in my tongue as he can, b) strip off a thicker and smaller chunk of skin and underlying muscle, fold it into said shape, and stuff it into the hole in my tongue, or c) scrape a big handful of functional epi- and sub-dermal material from the skin of my arms and paste this…uh…paste into the trough in my tongue. I asked him to work on my right arm. My left will have to handle my pitiful abilities to play guitar instrumentals, since singing, even singing painfully out of key as I generally do, is no longer going to be an option.
Meanwhile, I will be deep in the throes of morphine-induced unconsciousness, catheterized, and just sort of awaiting the moment the docs finish up, the nurses get me into ICU or recovery, depending on how massive the post-surgical trauma is, and I wake up more or less in serious discomfort and pain.
At that point, if there were justice, irony and humor in the universe, “Airplane” would just be coming on the TV suspended over my bed. And I’d probably rip out several rows of stitches laughing. And it would be worth it!
Sunday, February 10, 2013
It Might Get Messy
My throat is becoming noticeably less functional. And pain is more permanent. Meaning it’s time to deal with this baby. That’s “baby” in the sense of the tumor that grows on the shoulder of the guy at the end of “Canticle for Leibowitz” by Walter M. Miller Jr. Except I don’t expect mine to transform into the second coming of Christ, several thousand years and two global nuclear conflagrations after he was due. Of course, neither did the guy in the book, now that I think of it.
Anyway. Where were we? Oh yeah. A week ago Wednesday. A day that began as prima facie proof that, with massive assistance and tolerance of my professional colleagues, I was just about back to functioning at full form. First, an email from the guy running the short courses at the toxicology conference in Scotland this spring. Turns out he got two identical course proposals, one from me and my five-co-instructor posse, and one from an old acquaintance with a competing company. Short course guy wants us to merge our two full day proposals into a half day each. Kicking off a round of call-and-response among my team, the conference guy, and the guy from the other company. Of course, with a deadline for getting the entire act together by Friday.
Meanwhile, the course we teach at the university had its second class meeting the night prior. Had two students who needed to added to the roster and caught up on the work-to-date, a third on the fence about dropping who needed lots of information, and the administration at the U which needed a ton of paperwork completed. With everything, including Thursday’s class, two stops at the campus personnel office, roster finalized and everybody caught up by…Friday, of course.
Meanwhile, the projects that my friends and betters have been working me onto are coming to crisis points. One needs sample sites identified and mapped in the eastern swamplands of Louisiana, another needs toxicology thresholds for fish in Montana rivers, another has to have—immediately—a plan and budget to start natural resource damage assessment this year, and then there’s the one that…well, then my cell phone rings.
It’s Dr. H. Explaining to me what’s about to happen. Which is that I am going to be operated on sometime in the next two or three weeks, will spend seven to ten days (and if my experience is useful as a basis for temporal projection, it’ll be at least the latter) in hospital, then will have a period of weeks when it will be touch-and-go between survival, recovery, and drowning in my own oral secretions, then decisions will be made regarding whether to remove the tracheotomy or alternatively my trachea itself depending on how things go. THAT’S not a decision I’m looking forward to. And then there’s months more of recovery.
In any case, I spend the rest of Wednesday cleaning up the various professional messes engendered by the fact that I’m about to drop into the Seventh Circle of health care Hell. Cancel the short course. Transfer the university course. Disengage from active project work. Now I need to get my office clean enough to function without me taking up room at the center of the mess.
In any case, the internet is encouraging, as is the experience of the mom of one of Molly’s friends who’s had the same procedure. I think things are open to conjecture. We’re talking about nastily radical surgery here. In preparation, this coming Tuesday morning I go to meet with the plastic surgeon about the reconstruction. It is perhaps a measure of the time-critical nature of things that he returns from a conference in Europe today, is in surgery all day tomorrow, and sees me first thing Tuesday. I expect he’s gonna look like jet-lagged hell. But he is sure as hell going to have to explain this pot roast theory of tongue replacement to me. In detail. More on that next week, my friends. Hang in there, everyone. Things should get VERY interesting going forward from here!
Sunday, February 3, 2013
It Might Get Messy
Or it might come apart in a spectacular fractal decomposition of parts, subparts, fragments of parts, interstitial dust and liquids of varied textures, colors and origins. Which, I suppose in an existential and pointlessly metaphoric way pretty much defines “messy”.
Maybe better to say it’s gonna get ugly. Inevitably and inarguably ugly. Here’s the deal.
Dr. H studied the PET/CAT scan output. Found several things he didn’t like. A couple spots in my left lung that had grown measurably since my last scans. First evidence of remote expression of malignancy otherwise confined to my throat and tongue. On its face, this is bad. However.
The spot on my tongue where the original tumor was has re-sprouted cancer cells. And is growing rapidly. And is pretty damned big. Big enough so that today, I can feel it, and it is starting to hurt like hell 24/7. It has to go, and it has to go soon.
And that’s the start of how things are going to degrade. Treatment options for this revived tongue tumor are limited. I’ve pretty much run through my lifetime dose of radiation, so there’s no play there. Chemotherapy is possible, but can only slow, not stop or reverse, the malignancy. I’m afraid this baby requires surgery. On the plus side, the tumor appears to be coherent and amenable to successful removal. Absent the backup of radiation, though, Dr. H says he needs to overcut to minimize chances of future recurrence. This means drastic things for my future. The surgery will damage what’s left of the functional abilities of my throat complex. I may lose my ability to keep liquids from running into my respiratory tract. Simultaneously losing my ability to swallow. Leaving me…where? Dr. H wasn’t completely clear. I’ll have a tracheotomy through surgery and after. We’ll have to make a decision whether to keep it or lose it later. That decision may depend on whether I’d rather be able to talk or swallow.
Both functions, BTW, will be compromised by the replacement of a large proportion of my tongue mass with thigh muscle. In other words, if I’m going to be able to talk at all, I’m going to have to do so after teaching a frickin’ piece of bottom round roast to produce the sounds needed for human speech! As I inquired of Dr. H: “Are you shittin’ me?!”
Dr. H reported that he was not, unfortunately, shitting me. In fact, he said he thinks, but is not completely certain, that he will not have to remove my voicebox itself. Depends on that balance between swallowing and speaking. Which depends on the thoughts of the reconstructive surgeon who will spend the day in the operating room with Dr. H when they work me over.
More on that momentarily. Let’s go back to those lung spots. They’re small. One is 2 mm in diameter, the other 6 mm (I need to talk to the doc about this. I thought the resolution on the PET/CAT scan was on the order of cm. So I must be missing something). Anyway. This wouldn’t ordinarily be an issue, particularly since neither of them is “PET positive”—i.e., they didn’t take up the radiolabeled sugar. But they have grown. Dr. H consulted his “thoracic guy”, and they agree that the lung spots are in places where it would require massive and serious surgery to get viable biopsies. This would necessitate delay in treating the tongue tumor, mitigated as much as possible by chemo. Together, the docs think the risks of putting off dealing with the tongue tumor exceed the risks of waiting to see if the lung spots actually manifest as malignancies. Basically, they think I’ll be recovered enough from the throat surgery and reconstruction to deal with lung surgery if and when needed.
So, at the moment, we’re simply awaiting Dr. H getting an operating room he can schedule for a whole day’s work. Part of that depends on consulting with his “reconstruction guy”. Dr. H says he “has to find his reconstruction guy” to finalize the plan for surgery. This phrasing makes me think of a bad episode of The Wire, where Dr. H is desperately searching the bars and clubs in the northern residential barrens of Baltimore for an oral reconstruction surgeon.
The bottom line? I’m about to make a sudden transition from recovering and marginally functional middle aged guy to crippled and pathetic old man. It’s only gonna take a few weeks from now for the whole deal to go down.
Oh, don’t worry about me going down easy. I expect to be—promise to be—sharp and sarcastic through the process, out the back side, and onto the rest of the road. Next week, absent any more real news (which I don’t expect, even if Dr. H DOES manage to find his reconstruction guy) I’ll give you the hilarious story of last Wednesday, or as I call it, The Day the Diagnosis Went Down.
Thanks for being here, everybody. Hopefully I’ll have photos from surgery, which should be in a couple weeks. Love you all!
Sunday, January 27, 2013
It Might Get Messy
This is a hard entry to write. Please bear with me. I might drift off the track some or get lost in irrelevancies. But I’ll work to keep it on point and target-centered. If I wander, just walk with me a few steps. We’ll get back to the path together. I promise.
Messy comes in many varieties. There’s purposeful, directional, forward-looking messy. This is the kind of mess you find in the laboratories of scientists headed for breakthroughs, novelists finishing masterpieces, painters getting those last strokes onto a long worked and re-worked canvas. It’s the kind of messiness that, in the end, is irrelevant. Tracking backward from the finished product, you can trace the threads of its maturation, growth and birth through the piles of shit left along the way—the heaps of empty paint cans, stacks of books and papers, empty coffee containers, and pizza boxes. The mess, in this case, is a means to an end. And so, in a twisted way, possessed of an odd kind of inherent interest, kind of the way projectiles dug from the soil of civil war battlefields, the latter as close to a “perfect” mess as it may be possible to contemplate, are artifacts linking the messy process it took to get there to the outcome that made a world a damn site less messy than before.
Then there’s messy that’s just a mess. Because we live in a universe defined by dimensions of space and time, “mess” is not stasis. It fluctuates, sometimes bigger, sometimes smaller, always pushing forward, like a mole rat hell bent on moving 10 or 15 meters of African desert soil from its tubular highway to a heap on a roadside. But it doesn’t necessarily have a purpose, a direction, an objective. It’s just the mess that goes with life and living.
Or with death and dying. The universe as a whole doesn’t care who or what is alive and losing entropy or dead and re-upping the entropy supply. It may ultimately be that the universe likes having entropy compiled and then dissipated, a process that produces order from the cold fragments of black eternity. But I’m not prepared to go there yet. I’m only prepared to say that I don’t think the universe gives a rat’s ass whether it’s my butt using energy to keep entropy at bay, or something else—like maybe an actual rat’s ass.
Friday I went in for a PET scan. That’s the one where they inject me full of radiolabeled glucose, wait a while until the tissue starts to accumulate same in proportion to metabolic activity, and then image the residual radioactivity, yielding a graphic showing metabolic hotspots, which in a healthy human include such high-energy machinery as the brain, liver, kidneys, and heart. In an unhealthy human, malignant tumors rock and roll on that fludeoxyglucose, slurping it like an Ann Rice character lost in Texas Chain Saw movie.
The accessibility of the software seems to vary from visit-to-visit. This time, I’ve not been able to get the clearest or easiest-to-see images for you. Which actually makes the point rather vehemently. What I CAN see in these images is frightening. And you’re talking about a guy who thought he had seen “frightening” become passé in the years of radiation exposure, chemical treatment, and surgery.
The PET scan image above shows my brain in bright red and orange shows that the brain tissue is doing what it does—work. Hard. All the time. The human brain is massively energetically expensive. The bright color in the images demonstrates that the radiolabeled sugar is being absorbed rapidly and massively and used in place to make sure that my mind is…uh…minding the store, so to speak.
Now, one of the other figures is the scary one.
The image above shows a disembodied orange spot in the middle of my neck. That has no business being there. The normal tissue there plugs away at a none-too-swift metabolic rate, maintaining the mucosal surface, operating the swallowing and speaking muscles, generally just making sure things run smoothly. The fact that there is a bright shiny hotspot of radiolabeled glucose uptake there in that region of mostly slow chugging tissue is a really bad thing.
My friends, I haven’t begun to come to grips with the meaning of all this. I do know that treatment options are a lot more limited this time. My body’s taken pretty much all the radiation dosimetry it can take for quite a while, so generic radiation treatment is out of the tool kit. Leaves us with chemotherapy and surgery. Neither one sounds particularly attractive to me at his point. I’ve been getting better and better, my voice becoming more understandable, my energy level increasing, my grip on life becoming tight again. I taught the first class of the semester on Thursday night, and the kids could understand me just fine.
Let’s hope that whatever has to be done to fix this new physiological contretemps means the students can understand my voice all the way through the semester. That’s gonna be my benchmark for this one. If I can teach the full class without drastic remedial activities of any kind, I’ll take it as a good sign.
Next week, I expect Dr. H to look over these PET and CAT scans and schedule an MRI in prep for surgery. I’ll keep you plugged in. I’m a little concerned about this recurrence, I have to admit. I’ll need all of you out there pulling for me this time. Thanks for being here for me!!!
Sunday, January 20, 2013
It Might Get Messy
We spend a lot of our life between things. Between lovers. Between jobs. Between classes. Between houses. Between meals. And at the margins, between life and death. Living between things is, I think, a good place to be. It means you believe in the future. That something has passed to the…uh…past, and now you’re just waiting for the future end of that track to poke you in the ribs and say hello. It means you’re not living in the past, surviving on memories and leaving the future to its own devices. It makes you a player in the game of life, puts you in the position of having finished x, now must do y; having seen a time to see b, having experienced t, now ready for t +1.
Of course, not everything fits easily into this benign model of the present linkage of immediate past to immediate future. There are many things it’s best not to be between. Between wars. That’s never worked out very well as a stepping stone. Between hammer blows. Of whatever kind. Between good and evil. It may be where we’re stuck, but it’s not a comfortable place to be.
Now I’ve got a new one for you. Between tumors. From 18 months ago, when the final set of post-treatment biopsies and remote sensing data showed me to be cancer-free, until Friday last (that would be 18 January 2013) when Dr. H told me the tissue taken the prior week was indeed malignant, I had been between tumors.
In the not-so-remote past of cancer therapy, “between tumors” was about as good as it got as a treatment outcome. Nobody would or could say cancer was “cured”. Your cancer was “in remission”. Could return any time. Often would return. If you made it past your 5 year survival date without a newly positive diagnosis, you would feel comfortable that you had “beaten” cancer. Still came with the nagging assumption that you could be stricken at any moment, but the longer things went, the closer to “cured” you were.
Nowadays, people really do talk about “curing” specific cancers. Localized tumors, even if they’ve anastomosed, can be identified, delimited, eliminated, and, with conscientious follow-up monitoring and treatment, in many cases that was it. The cancer was over. You were, as a practical if not theoretic matter, cured.
But not me. On Friday the biopsy results came back positive. I have another tumor in my throat, pretty close to where the original primary was, deep on my tongue muscle. It’s actually pretty active, now that I know it’s there. It’s pumping out its own mucous cap a couple times a day, and it’s starting to generate some aching pain of its own. Fortunately at the moment I have open scrips for both Xanax and Oxcycodone, a couple of each at bed time lets me sleep despite the creeping growth of out-of-control throat tissue working actively to make what’s left of my life miserable and short.
Well, that at least ain’t gonna work. I turned 60 years old on 12 January, and my brain feels like it’s younger and more open to new learning than it has ever been before (the rest of my body, not so much, but that’s a different story). I don’t really know the implications of this recurrent cancer. Dr. H sounded pretty disgusted, or maybe discouraged is closer, on the phone on Friday. But he’s had the weekend to think about it. End of this week, he’ll have PET and CAT scan output to look out, I’m betting I’ll be in for another MRI the following week. And by then Dr. H’ll have a concept, a plan, and a timeline. And we can have it.
Somehow, I thought I was getting away too easy from this cancer stuff. Guess that was true. Time to strap the gear back on, pack in the ammo, and stumble back into the trenches. Am I ready for it? We’ll just have to see. Haven’t had cause to whine yet, which I’ll take as a good sign. Hang in there, everyone. Having you out there in the world is a huge part of what makes me strong here in my little corner. Love you all. Better update, hopefully with cool graphics, next weekend. Hola, everyone!!
Sunday, January 13, 2013
It Might Get Messy
I was pretty sick the last time Nurse C took care of me. That would have been a year-and-a-half-ago, when I was admitted via the emergency room, required a couple units of blood, and was generally as close to physiological collapse as I ever expect to be. At least until I DO physiologically collapse.
Nurse C, sole post-surgery attendant hanging around the recovery rooms on Friday, remembered our past meeting. She says I look “good”. Which I know, now that I am a 60-year old cancer survivor, is a comparative thing. I do not look “good” on any rational objective basis. And a comparative thing that can only be taken so far down the metaphorical path. I’m sure I look “good” now compared to the skeletal 187 pounds of painfully bruised and dehydrated prosciutto I was the last time I chatted with Nurse C. Otherwise, I look like an unattractive 60-year old cancer survivor.
Be that as it may. My purpose in being in the operating room on Friday was to be biopsied following a nasty bleeding incident and discovery of strip of torn tissue in the back of my throat. The intervening couple of weeks had not been particularly uncomfortable. My throat wasn’t clear, but it wasn’t clogged, either. Let’s call it “perturbed”.
Still, Dr. H is solicitous of my throat. He worries about it. Which is good. I can worry about it, but having no real understanding of the shifting tides of cancerous tissues, my worry is that of an amateur. Dr. H is a professional. He knows what to worry about and why.
He says my throat tissue remains fragile. That irritating foods are plausible causes of bleeding wounds. This continues to shock me. I can’t believe we’ve more or less permanently rendered my oral mucosae so sensitive that I can’t eat without painful discomfort. But that seems to be where we are.
So here’s a photo of my generally irritated throat. There’s apparently nothing characteristically carcinogenic about this line of scabby tissue. The fact that it has appeared is enough to render it suspicious.
So Dr. H had the anesthesiologist put me under and slipped the knives in to excise some of the scab. Here you can see the scalpel and the rectangle of flesh ready to be pulled out and dropped into the vial.
And the post-surgery tissue, ready to recover.
Dr. H figures to get biopsy results back middle of this coming week. In the meantime, he does not seem all that impressed with the inflamed spot of interest in this round. He thinks it has a fair chance of being malignant, but that it is compact and could be treated rapidly, easily, and surgically.
Which is good. Not sure I’m ready to go through another course of radiation and chemotherapy, at least not the intensive twice-a-day treatments I got in the first round. Conversely, I’m hoping to be left with enough functional mucous membrane in my oral cavity to be able to talk, eat, and breathe. Maybe not comfortably, but functionally.
Hopefully I’m there. We’ll find out later this week. If this tissue isn’t malignant, I’m going to take that as a very good sign. And if it is, I’ll take Dr. H’s confidence in its compact treatment as a good sign. Either way, let’s say it looks like I’m getting closer to closing out my cancer.
Then back to dealing with real life. I wonder if I’ll miss the distraction?
Sunday, January 6, 2013
It Might Get Messy
In 1883 in the morgue deep in the bowels of the Berlin City Hospital (I do not in fact know that the morgue was “deep in the bowels” of the building. I make the assumption for purposes of narrative interest), a guy named Hans Christian Gram was trying to find a way to make bacteria stand out from lung tissue in microscope slides prepared from tissues of pneumonia patients. Gram devised a procedure by which the thick sugar-and-protein cell wall of certain bacteria could be stained purple, via a method that left bacteria lacking the peptidoglycan layer pink. For a long time, Gram staining was a critical method in bacterial identification and description.
Many human pathogens are Gram positive. And many of the most ubiquitous antibiotics work by interfering with the production of the thick layer of sugar and amino acids that characterize Gram positive bacteria. Streptococcus and Staphylococcus are both Gram positive.
When I was a kid, I had bad lungs. I know that’s not very specific. My lungs definitely were bad. I had chronic asthma, which occasionally erupted into acute asthma, and often tended to devolve into bronchitis, inflammation of the upper respiratory tract.
Occasionally, the bronchitis would slip deeper and more permanently into my lungs as pneumonia. On the fundamental assumption that my lung infection was of streptococcal origin, at this point Dr. G would start me on antibiotics and send off a swab of tissue for culture identification. Generally by the time the lab results came back, the antibiotics had corralled the infection and I was on the mend, winding down from heavy dosages of norepinephrine, room-temperature apple juice, and weak tea with honey (but NOT with the shot of gin that Armenian-born and Soviet-trained Dr. G recommended, because gin and tea is absolutely disgusting, sick or not), and finally getting some sleep because I could lay almost horizontal without shutting down my respiratory system.
Except one time. My asthma acted up, bronchitis arrived, pneumonia crashed my lungs. Dr. G gave me antibiotics and sent off a sputum sample. I remained drastically ill. Serious difficulty breathing. Increasingly intense asthma. An all-around respiratory mess that dragged on and on.
The lab results came back. Turned out I did have a bacterial, not a viral, infection. But it was Gram negative. The “normal” antibiotics had no constraining effect on its reproduction. As soon as we swapped meds to one that would wack the cell wall construction of my Gram negative inhabitants, the pneumonia loosened up and I started to recover. Was an uncomfortable couple of weeks.
I was reminded of that incident earlier this week. The antibiotics Dr. K gave me for a possible sinus infection, which treatment had Dr. H’s concurrence, were having no noticeable effect. My throat was swollen, pain was increasing, swallowing was increasingly impaired. In the short term, I kind of thought I’d feel better with the infection knocked back by the antibiotics, and that there would follow a slow increase in throat irritation as the new damaged tissue that Dr. H discovered expanded.
Instead, my throat continued to hurt for a couple days after the antibiotic prescription ran its course. Then it started to feel better. Less pain. Less disruption. Less blockage. Less ickiness. And definitely less mucous.
My speech has been responsive to my Arabic exercises. I don’t hurt down in my throat. I got all my pre-operation tests out of the way last week. On Friday I go under the knives for Dr. H to slice biopsy samples from the back of my throat. Until a few days ago, I thought this was an exercise in futility. That there was clearly new tumor tissue sprouting around my mouth, tongue and throat. Now I’m not so sure. I think it’s possible there’s just another nasty sore spot left over from the radiation. The way long time ago radiation.
But that’s where we are at the moment. I’m optimistic. My mouth’s not sore. Swallowing still sucks, but I’m moving back toward solid food, lacking the pain that would justify skipping it. With a little luck, I’ll have a productive week at work, and a negative biopsy on Friday.
That would set me up for a wonderful winter. If I don’t have to be treated again, so that I can continue to reconstruct my professional life with duct tape and super glue, I’ll be happy. And healthy. Er. Healthier. I gotta live with the reality of an impaired oral apparatus. But if it’s not a recurrent malignant impairment, things’ll just be rosy. This week? Set me among the living, and the happy to be alive. And we’ll just have to wait and see what the biopsy results are before we decide which bucket to dump me in next week.
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