Recognizing the time crunch that comes with the winter holidays, I am going to give you and me a break and not post this week. However, much is churning in our little pocket of reality. Interesting and important changes are going down across the scales of being, from my physiology and health, through the holiday foods and festivities, to the parallel social and ecological systems that determine the sustainability of the biosphere and our collective lives and endeavors.
So check in next Sunday, 5 January 2014. We will share perspectives on my third full year of intense cancer management, and consider sundry issues pertaining to the holidays (including recipes and photos) and the trajectory of life on earth as we plow one more year into the 21st century.
I hope you are all having rollicking good times with friends, family, foods, and drinks as we wriggle out of the thoroughly worn and torn skin of 2013 and squidge our way into the shiny and pristine corpus of the new year. Rock on, everybody. We aren't getting any younger, and that means that every day we live and breathe is another slap in the face of the cold, dark, inevitable, entropy-driven universe. Let's rock!!!
Saturday, December 28, 2013
Saturday, December 21, 2013
It Might Get Messy
Yikes. What a week it’s been for health care here in the USA. We finally get our shit together as a society, manage to find a way to get everybody access to health care, and the White House mangles the great concept via bungled process. Icky. But that’s not the worst of it. The conservative fringe (which is a hell of a “fringe”—something close to 50% of the country self-identifies as “conservative”) has spent months loading weapons, pointing them at their own feet, and blowing them into bloody political froth. If the Democrats could manage to walk and chew gum at the same time, the Republicans could be so discredited that we could sell the whole damned middle of the country back to the French and leave ourselves with the rational and fun loving coasts plus a hefty cash balance to constrain health care costs to treat the sun tan related skin cancers and alcohol-damaged livers from all the beach butt-parking.
But that’s not why we’re here. We’re here to consider my own health care contretemps. And in that department, it’s been a busy week.
Monday I had the diagnostic tests. The technician shot me full of radioactive glucose first thing in the morning, and after an hour parked me on the stretcher to run through the detector. The radio-imaging takes 24 minutes, during which I lay flat on my back with my head tilted back and cradled in a basket. So here’s the problem. A few weeks ago, you may recall, I noticed that the saliva glands in my mouth that had been shut down since the radiation treatments started last spring had struggled back to life. They’ve been pumping out great volumes of thin salivary mucous ever since. This has some potential to be an issue. Since my epiglottis is permanently disabled, liquids originating in my mouth and throat can slide down my airway as readily as they slip down into my gut. Conveniently for me (and unusual, my doctors are surprised to learn that I do not need to constantly use the mechanical vacuum apparatus I have to drain my throat of liquids), the large volumes of saliva mostly find their way into my gastrointestinal tract and not my lungs.
Unless I’m on my back with my head cradled and tilted back. Under those conditions, all the thin salivary mucous (along with the lesser volume, but more difficult to manage, thick mucous originating deeper in my throat) can’t flow into my gut because “downhill” with my head tilted back is toward my cranium. So, for 24 minutes (during which I cannot move without screwing up the imaging) I had to lie there and feel liquids relentlessly filling my sinus cavities. In fact, by the time the imaging was done, the liquids were deep enough to be running out my nose. And when I finally sat up… . Woosh! Something like a liter-and-a-half of mucosal secretions started pouring out my nose, mouth, and tracheostomy tubing.
I have a good relationship with the imaging technician. We’ve spent a lot of time together the past few years. She is a youngish woman (maybe mid-30s), possibly spent time in the military. She’s got a sexy little tramp stamp, a very artistic abstract tat on her shoulder, and a diamond stud in her nose. She is mostly gruff and businesslike. But not with me. I crack her up, for some reason. So while I’m sitting in her office waiting for her to cut me a disk of the imaging files and leaking fluids like a sunken ferry hull lifted from the water by industrial cranes, she chuckles and kicks a waste basket across the floor to me so I can dispose of the enormous mass of paper towels accumulating in my lap as I mopped up the waterfall of goo.
On Wednesday, I had appointments with surgeon Dr. H and hematologist/oncologist Dr. T. Neither of them had read the radiology report before I got there. But they’re both excellent at what they do. Pulling up the file and scanning through it, they gave me the results. Which are without a doubt amazing. There is not a sign of malignancy anywhere in my head or neck. The surgery, radiation and chemotherapy last spring, given an 80% likelihood of failure by the same doctors, totally succeeded. There are a number of small spots in my lungs and in a couple of lymph nodes in my chest (all the lymph nodes from my shoulders north having been surgically removed) that took up the radio-labeled sugar. But the doctors don’t see any of them as a problem. None of them seems particularly tumor-like. There is some long-term potential danger from the lymph nodes—apparently if those are actually malignant there is no effective treatment. But basically, Drs. H and T agreed that I am, somewhat to their surprise, cancer-free. They said any 60 year old male, lassoed randomly from the streets and without a history of cancer, would generate images precisely like mine.
On Friday, I saw my radiation oncologist. Dr. N poked and prodded. He and a nurse teamed up to get an endoscope into my throat (irritating it in the process so that I coughed up blood for several hours afterward), and there is no sign of any diseased or even suspect tissue. I’m clean.
I do have a new pain (I think I reported it here a couple weeks back) at the base of my right mandible, running along the Eustachian tube. But this is not tumorous. It seems to be an artifact of the surgery. As the scars have settled in and the surrounding musculature recovered, they are apparently stretching or inflaming that area. But a half dose of dilaudid twice a day deals with that nagging pain just fine.
All three doctors seem surprised at their own handiwork. They all expected to see signs of resurgent or emergent malignancy. But there are none. They did one HELL of a good job.
My only real problem at the moment is nutrition. The emergency-ration food liquid is dense. I can pour in six 250 ml cartons a day. But that is not enough to maintain my weight, even though such a volume of “food” gives me chronic nausea and a tendency to acid reflux. I am very weak, and really need to stabilize my weight and gain five or six pounds to be back to a strength that will allow me to exercise. It takes a daily ration of seven or eight cartons of “food” to balance my metabolism.
So I checked in with my dietician. She gave me a high-calorie additive (rather like those “gasoline additives” they used to advertise to be poured on top of a tank of fuel in your car) to try. Turns out the additive plays hell with my bowels and is also expensive (health insurance is not covering my medical “food” this round. Which is annoying because a) they covered it last round of treatment, and b) while I do have to eat (which is their argument for not paying for the emergency rations), I would eat nowhere near enough food to equal the cost of this stuff). Dietician K says I can’t just go a General Nutrition Center store and get an off-the-shelf weight gain product. Apparently the powders are impossible to hydrate uniformly, and even small bits of undissolved powder will clog my feeding tube, necessitating a full surgical intervention for repair.
So I have my work cut out for me. I have to find a way to get more liquid stuffed into my gut. One thing we’ll try after the holidays is substituting a higher-calorie version of the liquids I’m presently using for a couple of the cartons per day. This may be enough to stem the withering of my corpus. But the “2 cal” version of the “1.5 cal” food I’m taking now is slow-moving syrupy goop. It may screw up my digestive tract as much as the additive version.
We’ll find out after Dietician K gets back from her winter holiday. But radiation oncologist Dr. N came up with a treatment he thinks will stimulate my appetite, suppress my chronic nausea, and kill the pain in my mandible as effectively as the dilaudid.
He gave me a fat prescription for THC. So it’s going to be very literally a HAPPY holiday season. Oh, and you thought LAST year was the “Best Thanksgiving Ever”! It’s looking like quite the fiesta for next year!
And that’s where things stand at the moment. Not only am I not dead or dying, I am actually recovering and finding a very acceptable quality-of-life. Modern medicine is a truly awesome arsenal of physiological weapons. Now if we could find a way to get such health care to all our citizens, the future would indeed be bright.
And in my little corner of the universe, it is already very bright. I am weak and badly wounded, but I am alive and functioning. I am having a SLAMMING holiday season, cooking, writing, playing guitar, and watching our grown-up kids find their way in the world. I am so grateful to be here that there are no words to convey my joy.
Rock on, everybody. And if you come here to rock on, why, I have a big-ass bottle of THC. “Merry Christmas” indeed!!!
But that’s not why we’re here. We’re here to consider my own health care contretemps. And in that department, it’s been a busy week.
Monday I had the diagnostic tests. The technician shot me full of radioactive glucose first thing in the morning, and after an hour parked me on the stretcher to run through the detector. The radio-imaging takes 24 minutes, during which I lay flat on my back with my head tilted back and cradled in a basket. So here’s the problem. A few weeks ago, you may recall, I noticed that the saliva glands in my mouth that had been shut down since the radiation treatments started last spring had struggled back to life. They’ve been pumping out great volumes of thin salivary mucous ever since. This has some potential to be an issue. Since my epiglottis is permanently disabled, liquids originating in my mouth and throat can slide down my airway as readily as they slip down into my gut. Conveniently for me (and unusual, my doctors are surprised to learn that I do not need to constantly use the mechanical vacuum apparatus I have to drain my throat of liquids), the large volumes of saliva mostly find their way into my gastrointestinal tract and not my lungs.
Unless I’m on my back with my head cradled and tilted back. Under those conditions, all the thin salivary mucous (along with the lesser volume, but more difficult to manage, thick mucous originating deeper in my throat) can’t flow into my gut because “downhill” with my head tilted back is toward my cranium. So, for 24 minutes (during which I cannot move without screwing up the imaging) I had to lie there and feel liquids relentlessly filling my sinus cavities. In fact, by the time the imaging was done, the liquids were deep enough to be running out my nose. And when I finally sat up… . Woosh! Something like a liter-and-a-half of mucosal secretions started pouring out my nose, mouth, and tracheostomy tubing.
I have a good relationship with the imaging technician. We’ve spent a lot of time together the past few years. She is a youngish woman (maybe mid-30s), possibly spent time in the military. She’s got a sexy little tramp stamp, a very artistic abstract tat on her shoulder, and a diamond stud in her nose. She is mostly gruff and businesslike. But not with me. I crack her up, for some reason. So while I’m sitting in her office waiting for her to cut me a disk of the imaging files and leaking fluids like a sunken ferry hull lifted from the water by industrial cranes, she chuckles and kicks a waste basket across the floor to me so I can dispose of the enormous mass of paper towels accumulating in my lap as I mopped up the waterfall of goo.
On Wednesday, I had appointments with surgeon Dr. H and hematologist/oncologist Dr. T. Neither of them had read the radiology report before I got there. But they’re both excellent at what they do. Pulling up the file and scanning through it, they gave me the results. Which are without a doubt amazing. There is not a sign of malignancy anywhere in my head or neck. The surgery, radiation and chemotherapy last spring, given an 80% likelihood of failure by the same doctors, totally succeeded. There are a number of small spots in my lungs and in a couple of lymph nodes in my chest (all the lymph nodes from my shoulders north having been surgically removed) that took up the radio-labeled sugar. But the doctors don’t see any of them as a problem. None of them seems particularly tumor-like. There is some long-term potential danger from the lymph nodes—apparently if those are actually malignant there is no effective treatment. But basically, Drs. H and T agreed that I am, somewhat to their surprise, cancer-free. They said any 60 year old male, lassoed randomly from the streets and without a history of cancer, would generate images precisely like mine.
On Friday, I saw my radiation oncologist. Dr. N poked and prodded. He and a nurse teamed up to get an endoscope into my throat (irritating it in the process so that I coughed up blood for several hours afterward), and there is no sign of any diseased or even suspect tissue. I’m clean.
I do have a new pain (I think I reported it here a couple weeks back) at the base of my right mandible, running along the Eustachian tube. But this is not tumorous. It seems to be an artifact of the surgery. As the scars have settled in and the surrounding musculature recovered, they are apparently stretching or inflaming that area. But a half dose of dilaudid twice a day deals with that nagging pain just fine.
All three doctors seem surprised at their own handiwork. They all expected to see signs of resurgent or emergent malignancy. But there are none. They did one HELL of a good job.
My only real problem at the moment is nutrition. The emergency-ration food liquid is dense. I can pour in six 250 ml cartons a day. But that is not enough to maintain my weight, even though such a volume of “food” gives me chronic nausea and a tendency to acid reflux. I am very weak, and really need to stabilize my weight and gain five or six pounds to be back to a strength that will allow me to exercise. It takes a daily ration of seven or eight cartons of “food” to balance my metabolism.
So I checked in with my dietician. She gave me a high-calorie additive (rather like those “gasoline additives” they used to advertise to be poured on top of a tank of fuel in your car) to try. Turns out the additive plays hell with my bowels and is also expensive (health insurance is not covering my medical “food” this round. Which is annoying because a) they covered it last round of treatment, and b) while I do have to eat (which is their argument for not paying for the emergency rations), I would eat nowhere near enough food to equal the cost of this stuff). Dietician K says I can’t just go a General Nutrition Center store and get an off-the-shelf weight gain product. Apparently the powders are impossible to hydrate uniformly, and even small bits of undissolved powder will clog my feeding tube, necessitating a full surgical intervention for repair.
So I have my work cut out for me. I have to find a way to get more liquid stuffed into my gut. One thing we’ll try after the holidays is substituting a higher-calorie version of the liquids I’m presently using for a couple of the cartons per day. This may be enough to stem the withering of my corpus. But the “2 cal” version of the “1.5 cal” food I’m taking now is slow-moving syrupy goop. It may screw up my digestive tract as much as the additive version.
We’ll find out after Dietician K gets back from her winter holiday. But radiation oncologist Dr. N came up with a treatment he thinks will stimulate my appetite, suppress my chronic nausea, and kill the pain in my mandible as effectively as the dilaudid.
He gave me a fat prescription for THC. So it’s going to be very literally a HAPPY holiday season. Oh, and you thought LAST year was the “Best Thanksgiving Ever”! It’s looking like quite the fiesta for next year!
And that’s where things stand at the moment. Not only am I not dead or dying, I am actually recovering and finding a very acceptable quality-of-life. Modern medicine is a truly awesome arsenal of physiological weapons. Now if we could find a way to get such health care to all our citizens, the future would indeed be bright.
And in my little corner of the universe, it is already very bright. I am weak and badly wounded, but I am alive and functioning. I am having a SLAMMING holiday season, cooking, writing, playing guitar, and watching our grown-up kids find their way in the world. I am so grateful to be here that there are no words to convey my joy.
Rock on, everybody. And if you come here to rock on, why, I have a big-ass bottle of THC. “Merry Christmas” indeed!!!
Sunday, December 15, 2013
It Might Get Messy
To reduce everybody's time burden this busy season, I'm not going to post this week. Tomorrow I have the HUGE diagnostic tests--PET scan (with radio tracer sugar) and CT scan (3D X-ray imaging) that will determine my short-term fate. If the tests are clean, I'll be nominally cancer-free (again) and can continue to enjoy life and the sweet winter holidays. If I have recurrent or emergent malignancy, it will be back into the trenches for more dramatic, life-or-death defensive warfare.
Stay tuned to see which path we walk together in 2014. I hope you all are having a wonderful winter. Things around here are just fabulous. All 3 kids back in the house, Christmas decorations up, the ancestral Panettone style bread ready to bake. I doesn't get better than this. Love you all. Happy holidays. Check this spot next week (pre-Christmas weekend) and the week after (pre-New Year's weekend) for all the cliffhanging drama you've come to expect from this real-life soap opera weblog!!!
Stay tuned to see which path we walk together in 2014. I hope you all are having a wonderful winter. Things around here are just fabulous. All 3 kids back in the house, Christmas decorations up, the ancestral Panettone style bread ready to bake. I doesn't get better than this. Love you all. Happy holidays. Check this spot next week (pre-Christmas weekend) and the week after (pre-New Year's weekend) for all the cliffhanging drama you've come to expect from this real-life soap opera weblog!!!
Saturday, December 7, 2013
It Might Get Messy
The thing about cancer is, it’s forever. This is, of course, literally true. It’s a simple matter of probability that a genetic error will coincide with other physiological conditions to cascade down the road of runaway cellular misconduct. This can happen any time, anywhere, at any age.
But it’s also true in a more immediate and frightening sense. Once you’ve had cancer, you have the nagging discomfiting feeling that it’s coming back. Or starting anew. Or both. There is a constant chipping at the edge of your consciousness, loose shards of paint and plaster around cracks where the tumor of your nightmares gains entry and proliferates.
I went to see my new “palliative care” specialist this week. Dr. S has been assigned the complicated task of keeping track of, adjusting, juggling, and prescribing my medications. He is being very sensitive regarding possible intrusions on my other doctor’s turf. I assured him that the medical team is not generally turf-conscious, and also that they are more-than-happy to be relieved of responsibility for the volume and diversity of my meds.
Dr. S is streamlining the anti-depressant and anti-anxiety components of my pharmaceutical program. We’re cutting back to one of each, and experimenting with doses to find the best balance between blissful sailing on the gentle waters of life and being passed out face down in muddy bilge scum under the storm-slammed decks of a trawler off Tierra del Fuego.
But I still had that “holy shit, we’re goin’ down, all hands to the boats, women and children first, get the band playing “Nearer My God to Thee” and signal the Carpathia” feeling when I started getting a new ache at the base of right mandible. It started as a single point of pain, about where the cheek meets the jaw. Over a few days, it grew and stretched along a line from up under my earlobe to down near my throat. Now it’s a constant dull ache, running along my Eustachian tube, feeling rather like a childhood post-swimming earache.
Anyway. First thing that popped into my mind, of course, was that there was a new malignancy sprouted and blooming in my throat behind my jaw. I emailed the doctors to appraise them of the pain and inquire about what to do. But, that was the first of the week of Thanksgiving, and perhaps unsurprisingly, the docs didn’t respond. Admittedly this is unusual. They’re ordinarily quick to reply. But I’m thinking they were just busy running between work and family, like most Americans at the holiday kickoff. When the pain stabilized, I figured it wasn’t some new issue. It feels more like an artifact of the surgical reconstruction of my face. There are a number of sliced, diced canals and suture lines in my neck. I think one of them is stretched, or maybe inflamed.
In any case, this pain is easily controlled with a half-dose of dilaudid twice a day. So I gave up trying to kick pain killers and resigned myself to one in the morning and one in the evening. Dr. S is onboard. He re-upped the scrip. Now I’ll be happy, not to say calm and relaxed, for the foreseeable future.
As to the potential for new tumors, that is, of course, reality. And for a number of reasons—baseline sensitivity, heavy doses of radiation therapy, massive application of diagnostic X-rays—I am more liable to sprout new malignancies than your average joker on the street here in the Year of Our Lord 2013, assuming your “Lord” goes by the consensus calendar we’ve all been using for the past few hundred years. We’ll be doing big threshold diagnostic tests the week before Christmas. I’ll have a PET (the one with the radiolabeled sugar uptake) and a CT (3-dimensional computer registered imaging) scan later in December. The results will be in my hands that day, in my doctor’s hands that evening. Since I am only able to read the imagery if there’s a massive crystal-clear tumor slurping up radiotag, it’s unlikely I’ll be able to tell anything at first glance. I’ll be seeing my covey of doctors the week or two after Christmas. That’s when we’ll really know if I’m cancer-clean, or if there is more painful marching to be done in 2014.
Until then I’ll be chirpily optimistic. Or maybe hazily optimistic, depending on how much pain medication I need to soothe my aching jaw. But in either case, I intend to have a slammin’ holiday season. 10 months ago, it was pretty clear to all concerned that I wasn’t going to be alive to celebrate these holidays. But here I am, candying orange peel, baking the family pan duce Christmas bread, watching football on TV, and reading Genesis, the 4 Gospels, and the Revelation of John in preparation for one more Christmas and New Year and birthday season.
I hope you are all having a great run-up to the holidays. Keep your stick on the ice and your aquavit in the freezer. With a little luck—and pending those upcoming diagnostics—I’ll be around to celebrate many more with you. Rock on, everybody!
But it’s also true in a more immediate and frightening sense. Once you’ve had cancer, you have the nagging discomfiting feeling that it’s coming back. Or starting anew. Or both. There is a constant chipping at the edge of your consciousness, loose shards of paint and plaster around cracks where the tumor of your nightmares gains entry and proliferates.
I went to see my new “palliative care” specialist this week. Dr. S has been assigned the complicated task of keeping track of, adjusting, juggling, and prescribing my medications. He is being very sensitive regarding possible intrusions on my other doctor’s turf. I assured him that the medical team is not generally turf-conscious, and also that they are more-than-happy to be relieved of responsibility for the volume and diversity of my meds.
Dr. S is streamlining the anti-depressant and anti-anxiety components of my pharmaceutical program. We’re cutting back to one of each, and experimenting with doses to find the best balance between blissful sailing on the gentle waters of life and being passed out face down in muddy bilge scum under the storm-slammed decks of a trawler off Tierra del Fuego.
But I still had that “holy shit, we’re goin’ down, all hands to the boats, women and children first, get the band playing “Nearer My God to Thee” and signal the Carpathia” feeling when I started getting a new ache at the base of right mandible. It started as a single point of pain, about where the cheek meets the jaw. Over a few days, it grew and stretched along a line from up under my earlobe to down near my throat. Now it’s a constant dull ache, running along my Eustachian tube, feeling rather like a childhood post-swimming earache.
Anyway. First thing that popped into my mind, of course, was that there was a new malignancy sprouted and blooming in my throat behind my jaw. I emailed the doctors to appraise them of the pain and inquire about what to do. But, that was the first of the week of Thanksgiving, and perhaps unsurprisingly, the docs didn’t respond. Admittedly this is unusual. They’re ordinarily quick to reply. But I’m thinking they were just busy running between work and family, like most Americans at the holiday kickoff. When the pain stabilized, I figured it wasn’t some new issue. It feels more like an artifact of the surgical reconstruction of my face. There are a number of sliced, diced canals and suture lines in my neck. I think one of them is stretched, or maybe inflamed.
In any case, this pain is easily controlled with a half-dose of dilaudid twice a day. So I gave up trying to kick pain killers and resigned myself to one in the morning and one in the evening. Dr. S is onboard. He re-upped the scrip. Now I’ll be happy, not to say calm and relaxed, for the foreseeable future.
As to the potential for new tumors, that is, of course, reality. And for a number of reasons—baseline sensitivity, heavy doses of radiation therapy, massive application of diagnostic X-rays—I am more liable to sprout new malignancies than your average joker on the street here in the Year of Our Lord 2013, assuming your “Lord” goes by the consensus calendar we’ve all been using for the past few hundred years. We’ll be doing big threshold diagnostic tests the week before Christmas. I’ll have a PET (the one with the radiolabeled sugar uptake) and a CT (3-dimensional computer registered imaging) scan later in December. The results will be in my hands that day, in my doctor’s hands that evening. Since I am only able to read the imagery if there’s a massive crystal-clear tumor slurping up radiotag, it’s unlikely I’ll be able to tell anything at first glance. I’ll be seeing my covey of doctors the week or two after Christmas. That’s when we’ll really know if I’m cancer-clean, or if there is more painful marching to be done in 2014.
Until then I’ll be chirpily optimistic. Or maybe hazily optimistic, depending on how much pain medication I need to soothe my aching jaw. But in either case, I intend to have a slammin’ holiday season. 10 months ago, it was pretty clear to all concerned that I wasn’t going to be alive to celebrate these holidays. But here I am, candying orange peel, baking the family pan duce Christmas bread, watching football on TV, and reading Genesis, the 4 Gospels, and the Revelation of John in preparation for one more Christmas and New Year and birthday season.
I hope you are all having a great run-up to the holidays. Keep your stick on the ice and your aquavit in the freezer. With a little luck—and pending those upcoming diagnostics—I’ll be around to celebrate many more with you. Rock on, everybody!
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