Adios 2009
Not a bad year. I wouldn't wish cancer on anyone, but I'm a better guy than before. In ways covered in previous posts.
Plus, and this may not make me better: I'm not going to sit and just watch myself age any more. This is not just a year-end, decade-end resolution. It's life and death; choosing life.
I'm now figuring out where to focus, how to boil it down, then heave myself out of the chair and do it. As I reach conclusions about the two or three or four things I have to do, I will amend the words at the top of Strays, and report.
Happy Days. Happy New Year.
Monday, December 28, 2009
Wednesday, December 09, 2009
The American Bottom 
"The American Bottom is that 60 mile strip of lowland lying between the bluffs and the east bank of the Mississippi River. Its ealiest recorded history is written in the annals of France, England, and Spain, and the wars these nations fought against each other, and against native Indian tribes for dominion of the New World.
"Following the discoveries of Jolliet and Marquette in 1673 and the exploration of LaSalle in 1682, France claimed possession of the entire Mississippi valley, extending from the Appalachian Mountains in the east to the Spanish Empire in the west. Here in the center of this vast expanse known as the Illinois Country, Louis XIV erected a fort and settlers from Canada and France established the village of Cahokia in 1699, and the villages of St. Phillippe, Fort de Chartres, Prairie du Rocher, and Kaskaskia early in the eighteenth century... ."
From a sign on Illinois Route 3 to Chester.
"The American Bottom is that 60 mile strip of lowland lying between the bluffs and the east bank of the Mississippi River. Its ealiest recorded history is written in the annals of France, England, and Spain, and the wars these nations fought against each other, and against native Indian tribes for dominion of the New World.
"Following the discoveries of Jolliet and Marquette in 1673 and the exploration of LaSalle in 1682, France claimed possession of the entire Mississippi valley, extending from the Appalachian Mountains in the east to the Spanish Empire in the west. Here in the center of this vast expanse known as the Illinois Country, Louis XIV erected a fort and settlers from Canada and France established the village of Cahokia in 1699, and the villages of St. Phillippe, Fort de Chartres, Prairie du Rocher, and Kaskaskia early in the eighteenth century... ."
From a sign on Illinois Route 3 to Chester.
Thursday, November 05, 2009
Good-bye to All That
Yesterday, back with the surgeon for a checkup, and I'm good. Well, 95 percent, and still improving.
What's cancer-free? No detectable evidence of cancer in the body. That's where I am today. It's too early for the petscans and other detection, so this is just based on what he can see and I can feel.
Still, what about that darned occult primary? At this point, four possibilities, more or less in declining order of likelihood: (1) it was scraped up with the other stuff in surgery, and not caught in pathology; (2) the radiation got it; (3) it's still there but too small to see (or worry about), and/or (4) my immune system got it.
It really was a principal reason why I had any radiation at all. But my treatment was limited, and now it shows. I'm back to liking (but not yet loving) hamburgers.
So that's it, until further notice. The blog will stop being a cancer watch, and go back to all those things I care a lot more about. The Republic of Equity... Burr and Hamilton... my new jazz group, as yet unnamed... Sixth Amendment in Missouri.... the Mississippi-Illinois confluence... stuff...
The toad above was sitting by the pool and let me come close to shoot. A nice sunny day in September, when I felt like utter crap. He cheered me up.
What happens to him in November?
Tuesday, October 13, 2009
Broken System
Before your eyes glaze over at the idea of a discussion of healthcare let me say this is a little different. This is a few thoughts about the national debate from the perspective of a guy who is (a ) a business lawyer and (b) in the middle of cancer treatment. But: policy wonk alert. Go back to cruising hulu if you're just lookin' for fun.
One think that bugs me is the constant reference to the unanimous consensus that the system is broken. Hey... with a typical company medical plan I am using the best medical establishments in the whole damn world, on my way to survival of a serious cancer case, and not having to take on another mortgage to do it. Is this system broken for everyone but me?
This Broken System has placed an internationally recognized cancer treatment center 20 minutes from my house. The people I see in there for treatment are all colors and ages and walks of life. The Broken System treats them all, so far as I can see, with respect and courtesy. I know of no one who has abandoned this Broken System to get care in, say, Spain.
The insurance companies in the Broken System have been who they are: administrators of written policies of insurance. I'm going to have some issues; who wouldn't, with tens of thousands of dollars at stake at every turn. But they are not being evil, and it really offends me to hear the pols try to turn the populace into a lynch mob for evil insurance companies. Medical insurance companies sell coverage (or just administration) to companies based on written plans. If a company were to say - cover all my employees' medical claims, period; if it's a bona fide bill from a medical service provider, pay it -insurance companies could sell that plan, they'd be happy to. It would cost a fortune, however, and no company would buy it. So there are limitations based on pre-existing conditions, levels of care, types of illness that are not covered, location of the providers, etc.
In close cases the insurance companies have the job, as administrators, of making the call. But if something isn't covered, it's because the plan doesn't cover it. Not because insurance company executives are diabolical.
I know that this all is irrelevant to the person who is unemployed, or whose employer doesn't have a plan. They don't have care as good as mine, and it is probably costing society way too much to provide them the care they get. For this I'm sorry. But they don't have food or shelter or education as good as mine either; and I'm sorry for this, too. There is as yet no system that has figured out how to make all these things equal in a multi-cultural, multi-racial nation of more than 300 million people. (Please, forget Denmark. It has 6 million people, 80 percent of whom are fitness-oriented Lutherans. It's not comparable.)
What we do have, for now, is an American system of health care - organic, grown up in markets, complicated, private for those under 65, and with plenty of flaws. Driven in part by a long-standing tax break, where pre-tax dollars are used to pay premiums. It isn't broken. It has flaws that can be identified and addressed, one by one. It will never be perfect and will never, unless we want to become Cuba, provide exactly equal levels of medical care to everyone.
Before your eyes glaze over at the idea of a discussion of healthcare let me say this is a little different. This is a few thoughts about the national debate from the perspective of a guy who is (a ) a business lawyer and (b) in the middle of cancer treatment. But: policy wonk alert. Go back to cruising hulu if you're just lookin' for fun.
One think that bugs me is the constant reference to the unanimous consensus that the system is broken. Hey... with a typical company medical plan I am using the best medical establishments in the whole damn world, on my way to survival of a serious cancer case, and not having to take on another mortgage to do it. Is this system broken for everyone but me?
This Broken System has placed an internationally recognized cancer treatment center 20 minutes from my house. The people I see in there for treatment are all colors and ages and walks of life. The Broken System treats them all, so far as I can see, with respect and courtesy. I know of no one who has abandoned this Broken System to get care in, say, Spain.
The insurance companies in the Broken System have been who they are: administrators of written policies of insurance. I'm going to have some issues; who wouldn't, with tens of thousands of dollars at stake at every turn. But they are not being evil, and it really offends me to hear the pols try to turn the populace into a lynch mob for evil insurance companies. Medical insurance companies sell coverage (or just administration) to companies based on written plans. If a company were to say - cover all my employees' medical claims, period; if it's a bona fide bill from a medical service provider, pay it -insurance companies could sell that plan, they'd be happy to. It would cost a fortune, however, and no company would buy it. So there are limitations based on pre-existing conditions, levels of care, types of illness that are not covered, location of the providers, etc.
In close cases the insurance companies have the job, as administrators, of making the call. But if something isn't covered, it's because the plan doesn't cover it. Not because insurance company executives are diabolical.
I know that this all is irrelevant to the person who is unemployed, or whose employer doesn't have a plan. They don't have care as good as mine, and it is probably costing society way too much to provide them the care they get. For this I'm sorry. But they don't have food or shelter or education as good as mine either; and I'm sorry for this, too. There is as yet no system that has figured out how to make all these things equal in a multi-cultural, multi-racial nation of more than 300 million people. (Please, forget Denmark. It has 6 million people, 80 percent of whom are fitness-oriented Lutherans. It's not comparable.)
What we do have, for now, is an American system of health care - organic, grown up in markets, complicated, private for those under 65, and with plenty of flaws. Driven in part by a long-standing tax break, where pre-tax dollars are used to pay premiums. It isn't broken. It has flaws that can be identified and addressed, one by one. It will never be perfect and will never, unless we want to become Cuba, provide exactly equal levels of medical care to everyone.
Thursday, October 08, 2009
Waking Up
This must happen all the time. After surgery, or radiation, or one of the other dramatic things the medical profession does to us (often for very good reason) there is a period of recovery that includes a lot of discomfort, sleeplessness, disorientation and, well, drugs. It all becomes a muddle, until at some point - a point I reached last weekend - you say, enough. And you quit all the meds.
What happens next probably varies all over the place. In my case it didn't go too well at first and I grabbed for the anti-anxiety pills one of the many docs I have come to know had prescribed. But now I'm past that, and remarkably enough, tonight, on the heels of a really disastrous loss by the Cardinals to the Dodgers, I think I'm waking up.
Doesn't mean I feel like running a marathon or eating a cheeseburger. Still tired. But I'm getting to a level of clarity - and recognition that it's once again an interesting thing to be a man, husband, father, partner in a law firm, with a lot of people and things and events I'm responsible for.
This must happen all the time. After surgery, or radiation, or one of the other dramatic things the medical profession does to us (often for very good reason) there is a period of recovery that includes a lot of discomfort, sleeplessness, disorientation and, well, drugs. It all becomes a muddle, until at some point - a point I reached last weekend - you say, enough. And you quit all the meds.
What happens next probably varies all over the place. In my case it didn't go too well at first and I grabbed for the anti-anxiety pills one of the many docs I have come to know had prescribed. But now I'm past that, and remarkably enough, tonight, on the heels of a really disastrous loss by the Cardinals to the Dodgers, I think I'm waking up.
Doesn't mean I feel like running a marathon or eating a cheeseburger. Still tired. But I'm getting to a level of clarity - and recognition that it's once again an interesting thing to be a man, husband, father, partner in a law firm, with a lot of people and things and events I'm responsible for.
Sunday, September 20, 2009
Stop Whinging
I want to move quickly past the last post's woefulness and say once again that my journey has been loaded with blessings. The greatest of these has been reconnection with a lot of people from my past. That's certain. Less certain, but if it stays also a huge benefit, is a serious reexamination of my life and my priorities and making some steps in new directions. And probably most ephemeral, but cool for now, is dropping about 50 pounds and the beard.
Joe Carpenter took the picture, looking north from his balcony, with Forest Park in the background. The balloon race started about 30 minutes later.
Tuesday, September 15, 2009
Not Wonderful
Six sessions to go.
Well, I promised that when the bad side effects came along I would report. Keepin' my word, even though it's a downer.
Radiation itself is painless, just like an x-ray (which is really just a lower-voltage version.) But in cases like mine, where it zeroes in on your neck, the pain comes from the damage to your neck and mouth.
Mostly it's back to really, really hating putting anything in my mouth. It isn't loss of appetite. It's anti-appetite. Things taste bad, feel bad, leave a bad feeling which I obsessively try to scrub out with mouthwashes, toothbrushes and hacking and spitting like a geezer in a cornfield. Even water tastes salty and stings, so I've come up with this mixture of baking soda and fake sugar that I mix in, and it stings less. The stinging comes from mouth sores (I know, this is way too much information, but if I go totally sardonic and elliptical with this it will not be true.) The diet is principally Ensure Plus, plus a generic Walgreens version because I'm so cheap and don't care about the taste anyway, and Muscle Milk.
I still have a nostalgic memory about the whole tasty food thing. Pizzas look great. But imagining putting a slice in my mouth... no thanks. I'd as soon bite a squirrel.
My skin is increasing looking burned, although recently some friends said it was more George Hamilton than, say, Geronimo.
The process is literally self-destructive. I am strapped down and letting folks blast away with the intention of killing cells. Some mornings you have to march yourself to the appointment, with part of you screaming that you should turn around - indeed, that you never should have done this in the first place. Radiation creates permanent changes that they can't fully predict. These bad side effects are only going to get worse, for weeks after the treatments end.
The answer to this, as I've said before, is that this beats death, and that's what cancer portends. OK. Hard to grasp, though. At no point in the process have I felt like I was dying.
And there is this glorious silver lining. Despite the tut-tutting of my nurses I have lost a ton of weight, and everyone says I look great. I don't yet feel great, but I see it ahead. Next post: pictures!
Six sessions to go.
Well, I promised that when the bad side effects came along I would report. Keepin' my word, even though it's a downer.
Radiation itself is painless, just like an x-ray (which is really just a lower-voltage version.) But in cases like mine, where it zeroes in on your neck, the pain comes from the damage to your neck and mouth.
Mostly it's back to really, really hating putting anything in my mouth. It isn't loss of appetite. It's anti-appetite. Things taste bad, feel bad, leave a bad feeling which I obsessively try to scrub out with mouthwashes, toothbrushes and hacking and spitting like a geezer in a cornfield. Even water tastes salty and stings, so I've come up with this mixture of baking soda and fake sugar that I mix in, and it stings less. The stinging comes from mouth sores (I know, this is way too much information, but if I go totally sardonic and elliptical with this it will not be true.) The diet is principally Ensure Plus, plus a generic Walgreens version because I'm so cheap and don't care about the taste anyway, and Muscle Milk.
I still have a nostalgic memory about the whole tasty food thing. Pizzas look great. But imagining putting a slice in my mouth... no thanks. I'd as soon bite a squirrel.
My skin is increasing looking burned, although recently some friends said it was more George Hamilton than, say, Geronimo.
The process is literally self-destructive. I am strapped down and letting folks blast away with the intention of killing cells. Some mornings you have to march yourself to the appointment, with part of you screaming that you should turn around - indeed, that you never should have done this in the first place. Radiation creates permanent changes that they can't fully predict. These bad side effects are only going to get worse, for weeks after the treatments end.
The answer to this, as I've said before, is that this beats death, and that's what cancer portends. OK. Hard to grasp, though. At no point in the process have I felt like I was dying.
And there is this glorious silver lining. Despite the tut-tutting of my nurses I have lost a ton of weight, and everyone says I look great. I don't yet feel great, but I see it ahead. Next post: pictures!
Tuesday, September 08, 2009
Second Front
This odyssey has been made more stormy because the treatment, and maybe the cause, of my disease are tangled up with another disease I have had for many years. It's called psoriasis, and I have both skin psoriasis and psoriatic arthritis. The condition first appeared in my 20's, and ramped up hugely in my 40's.
Many people know psoriasis only through a trivializing piece of ad copy from the 1960's, Tegrin's "The Heartbreak of Psoriasis." It seems to put the disease somewhere on the shelf with dandruff and athlete's foot. In fact it is much more serious. It is rarely discussed, and frequently hidden by those who have it. For years I have told people, for example, that I don't like sitting on the beach or swimming. Both are lies. I just didn't want to be seen with my shirt off. In much of history it was conflated with leprosy; in the Middle Ages, for all I know, I would have been wearing a bell. And the arthritis component actually turns out to be even worse. Like rheumatoid arthritis, it causes your joints not just to hurt, but to deteriorate.
Some drugs have appeared in the last few years, and eventually I got to one of them, Humira. Very expensive, self-administered by shots twice a month, in a class called biologics. Humira was a miracle. After several months on it I literally forgot I had psoriasis. My skin cleared and my joints no longer hurt, my hands felt as free and fast on the keyboard as they had in college.
About a month before my cancer was diagnosed I had an episode at the office where, after several days of working on a fairly intense deal, I became unshakably light-headed. One of my partners drove me to the emergency room and the diagnosis was vertigo. Vertigo is another under-appreciated disease (perhaps more a symptom than a disease). It can be quite incapacitating; fortunately there is pretty effective medication. In my case its cause was unknown, but it may well have been caused by stress plus Humira, my wonder drug.
Occasional episodes of vertigo, while not appealing, would not be enough to take me off Humira. But cancer has knocked me off - all the doctors have said to stay off it, at least through the radiation process. So the psoriasis is back, worse every day.
I can live with this for a while, but not forever. It presents me with a dilemma. There appears to be some connection between biologics and cancer, although I have found nothing specifically connecting Humira and my kind of neck cancer. The doctors see no obvious scientific connection. But how would anyone know? This drug is brand new, only approved for psoriasis in the last couple of years. I have found one recent article by dermatologists who recommend more research into whether there may be connections between the new medications for psoriasis and what they call "malignancies."
So there are more waters to cross and suitors to slay (to return to my metaphor) before I settle back down in Ithaca with Penelope. Sharpening my sword.
This odyssey has been made more stormy because the treatment, and maybe the cause, of my disease are tangled up with another disease I have had for many years. It's called psoriasis, and I have both skin psoriasis and psoriatic arthritis. The condition first appeared in my 20's, and ramped up hugely in my 40's.
Many people know psoriasis only through a trivializing piece of ad copy from the 1960's, Tegrin's "The Heartbreak of Psoriasis." It seems to put the disease somewhere on the shelf with dandruff and athlete's foot. In fact it is much more serious. It is rarely discussed, and frequently hidden by those who have it. For years I have told people, for example, that I don't like sitting on the beach or swimming. Both are lies. I just didn't want to be seen with my shirt off. In much of history it was conflated with leprosy; in the Middle Ages, for all I know, I would have been wearing a bell. And the arthritis component actually turns out to be even worse. Like rheumatoid arthritis, it causes your joints not just to hurt, but to deteriorate.
Some drugs have appeared in the last few years, and eventually I got to one of them, Humira. Very expensive, self-administered by shots twice a month, in a class called biologics. Humira was a miracle. After several months on it I literally forgot I had psoriasis. My skin cleared and my joints no longer hurt, my hands felt as free and fast on the keyboard as they had in college.
About a month before my cancer was diagnosed I had an episode at the office where, after several days of working on a fairly intense deal, I became unshakably light-headed. One of my partners drove me to the emergency room and the diagnosis was vertigo. Vertigo is another under-appreciated disease (perhaps more a symptom than a disease). It can be quite incapacitating; fortunately there is pretty effective medication. In my case its cause was unknown, but it may well have been caused by stress plus Humira, my wonder drug.
Occasional episodes of vertigo, while not appealing, would not be enough to take me off Humira. But cancer has knocked me off - all the doctors have said to stay off it, at least through the radiation process. So the psoriasis is back, worse every day.
I can live with this for a while, but not forever. It presents me with a dilemma. There appears to be some connection between biologics and cancer, although I have found nothing specifically connecting Humira and my kind of neck cancer. The doctors see no obvious scientific connection. But how would anyone know? This drug is brand new, only approved for psoriasis in the last couple of years. I have found one recent article by dermatologists who recommend more research into whether there may be connections between the new medications for psoriasis and what they call "malignancies."
So there are more waters to cross and suitors to slay (to return to my metaphor) before I settle back down in Ithaca with Penelope. Sharpening my sword.
Monday, August 31, 2009
Middle Passage
Among the less-obvious advantages to losing weight is surviving crowded flights.
Travelling to my Favorite Place in the World last week there were two legs on the flight, to Orlando and then to Providence. Southwest, generally the best airline I fly, fell from grace this time. It kept us out on the tarmac in Orlando for 30 minutes after landing. By the time I disembarked they were stern voices in the concourse telling me to get to the Providence gate, and fast.
Those of us who fly SW a lot are obsessed with the assigned number in line, and because this time I e-checked in exactly 24 hours ahead I was number A 22, which is near as good as it gets on a cheap flight. But because of tarmac time it didn't matter, and as I hustled on they said we have one seat left we are holding. It's down there, about row 20.
I was not surprised to see the mildly well-fed guy on the aisle, maybe 225, who I learned during the flight (by eying his laptop screen, geez he did nothing to hide it) worked in IT outsourcing. The lady on the window, on the other hand, was breathtaking. A magnificent 400 pounds, had to be. Her bounteous right thigh oozed under the armrest a good three inches into my prospective territory.
I sat down and Mr. Strays, even the new more-slender version, was not rolling around in his seat. Her right thigh and my left one were burning through fabric for the next two hours. (Actually, after while, I moved my wallet to my left pocket. It was just too steamy. When I slid the wallet in she gave me a look. Since she was reading a novel about the End of Days, I'm sure she took refuge in the knowledge that I would stay behind with the heathen while she went up in rapture. That'll teach him, the weirdo.)
But I did make it, and I'm not sure pre-cancer, pre-losing-the-weight (at this point 35 pounds) I could have. A kind of silver lining. Maybe silver plate.
The SW flight attendant magnanimously waived off my coupon when she brought me a Bailey's Irish Cream (not, with my delicate condition, as benign as it sounds.) I listened to lectures on the Second Punic War and finally drowned myself in Erroll Garner. Blessings upon my daughter who gave me the Ipod.
Among the less-obvious advantages to losing weight is surviving crowded flights.
Travelling to my Favorite Place in the World last week there were two legs on the flight, to Orlando and then to Providence. Southwest, generally the best airline I fly, fell from grace this time. It kept us out on the tarmac in Orlando for 30 minutes after landing. By the time I disembarked they were stern voices in the concourse telling me to get to the Providence gate, and fast.
Those of us who fly SW a lot are obsessed with the assigned number in line, and because this time I e-checked in exactly 24 hours ahead I was number A 22, which is near as good as it gets on a cheap flight. But because of tarmac time it didn't matter, and as I hustled on they said we have one seat left we are holding. It's down there, about row 20.
I was not surprised to see the mildly well-fed guy on the aisle, maybe 225, who I learned during the flight (by eying his laptop screen, geez he did nothing to hide it) worked in IT outsourcing. The lady on the window, on the other hand, was breathtaking. A magnificent 400 pounds, had to be. Her bounteous right thigh oozed under the armrest a good three inches into my prospective territory.
I sat down and Mr. Strays, even the new more-slender version, was not rolling around in his seat. Her right thigh and my left one were burning through fabric for the next two hours. (Actually, after while, I moved my wallet to my left pocket. It was just too steamy. When I slid the wallet in she gave me a look. Since she was reading a novel about the End of Days, I'm sure she took refuge in the knowledge that I would stay behind with the heathen while she went up in rapture. That'll teach him, the weirdo.)
But I did make it, and I'm not sure pre-cancer, pre-losing-the-weight (at this point 35 pounds) I could have. A kind of silver lining. Maybe silver plate.
The SW flight attendant magnanimously waived off my coupon when she brought me a Bailey's Irish Cream (not, with my delicate condition, as benign as it sounds.) I listened to lectures on the Second Punic War and finally drowned myself in Erroll Garner. Blessings upon my daughter who gave me the Ipod.
Monday, August 24, 2009
Hunger
10 sessions with the radiators down, 20 to go.
Up until this latest adventure "hunger" meant, for me, the feeling I get when I imagine I am going to sink my teeth into a delicious hamburger. So really it is more like foodlove. Now, 10 sessions in, hamburgers are yuck and pizza is yuck and the world's greatest coq au vin would be yuck, so no more hunger. Except that there is a physical sensation, largely new to me: pain in the stomach and light-headedness. That is now my signal to eat.
I wonder if foodlove is a relatively new development in our evolution. Did Mooga the Caveman really drool over sinking his teeth (or gums) into a raw mastodon shank? Did he look forward to the next handful of berries (or were those the ones that killed Booga last week?) Did he just have a growly stomach and a headache?
There's a professor at Harvard, Richard Wrangham, who evidently argues in "Catching Fire - How Cooking Made us Human" that cooking - not harnessing fire, or the domestication of agriculture - is what brought us up to the level of homo erectus. Better nutrition, more efficient use of diet, etc. But maybe it was more than that. Maybe it was taste, and the evolution of hunger. Maybe it was Shooga, back in the cave, grilling that mastodon shank, that introduced Mooga to foodlove - and brought him home from the hunt.
10 sessions with the radiators down, 20 to go.
Up until this latest adventure "hunger" meant, for me, the feeling I get when I imagine I am going to sink my teeth into a delicious hamburger. So really it is more like foodlove. Now, 10 sessions in, hamburgers are yuck and pizza is yuck and the world's greatest coq au vin would be yuck, so no more hunger. Except that there is a physical sensation, largely new to me: pain in the stomach and light-headedness. That is now my signal to eat.
I wonder if foodlove is a relatively new development in our evolution. Did Mooga the Caveman really drool over sinking his teeth (or gums) into a raw mastodon shank? Did he look forward to the next handful of berries (or were those the ones that killed Booga last week?) Did he just have a growly stomach and a headache?
There's a professor at Harvard, Richard Wrangham, who evidently argues in "Catching Fire - How Cooking Made us Human" that cooking - not harnessing fire, or the domestication of agriculture - is what brought us up to the level of homo erectus. Better nutrition, more efficient use of diet, etc. But maybe it was more than that. Maybe it was taste, and the evolution of hunger. Maybe it was Shooga, back in the cave, grilling that mastodon shank, that introduced Mooga to foodlove - and brought him home from the hunt.
Thursday, August 13, 2009
Back to Milkshakes
Three sessions down, 27 to go.
Today I met with the the radiation oncologist and his entourage, and the theme seemed to be: you ain't seen nothing yet. Because at this point I feel fine, and they are pretty sure I won't. Whatever. I'll report it when it happens.
But a really hammered-home theme was weight. I'm going to lose it.
Don't treat it as an opportunity. If you're thinking now would be a good time to shed a few pounds, don't go there. In fact you have to increase your normal intake because the radiation is ramping up your metabolism.
Seriously. The nurse-practitioner said one of the last things to go was a taste for chocolate. Don't scrimp, go for Hershey's sauce and pour it on everything. I'm not kidding. (Hershey's, heck. Hasn't she heard of Christopher Elbow?)
Now, Mr. Strays is a guy who has always had weight issues. (Take a look at my 8/10/08 post, "Fat Kid.") For me, this is a little like: sorry, you're going to have to resume smoking crack. Oh rats.
Back to Steak 'N Shake! There's a pre-4 pm discount on milkshakes!
Three sessions down, 27 to go.
Today I met with the the radiation oncologist and his entourage, and the theme seemed to be: you ain't seen nothing yet. Because at this point I feel fine, and they are pretty sure I won't. Whatever. I'll report it when it happens.
But a really hammered-home theme was weight. I'm going to lose it.
Don't treat it as an opportunity. If you're thinking now would be a good time to shed a few pounds, don't go there. In fact you have to increase your normal intake because the radiation is ramping up your metabolism.
Seriously. The nurse-practitioner said one of the last things to go was a taste for chocolate. Don't scrimp, go for Hershey's sauce and pour it on everything. I'm not kidding. (Hershey's, heck. Hasn't she heard of Christopher Elbow?)
Now, Mr. Strays is a guy who has always had weight issues. (Take a look at my 8/10/08 post, "Fat Kid.") For me, this is a little like: sorry, you're going to have to resume smoking crack. Oh rats.
Back to Steak 'N Shake! There's a pre-4 pm discount on milkshakes!
Tuesday, August 11, 2009
Zap Session
So this morning was the first day of radiation.
But before I get to that: when did "so" become a discourse particle? At the beginning of a sentence it used to mean "thus" or "therefore", and I guess it evolved to "And to continue my story..." which I guess is how I'm using it here and below. But now it seems to have become an opening pause word, adding some color, but with no real content. Maybe it's the more grown-up version of "like." If so, not for me:
Like, this morning was the first day of radiation.
It was kind of creepy. You are shirtless, flat on your back on a hard surface, with a gizmo that positions the neck and head. The mask they fabricated for the occasion is placed on your puss and screwed down tight. Very tight, so much so that it closed my eyes and mouth and as a result, a frisson of panic. Quickly I realized I could still breathe and the 20-something tech ladies were saying the right things. (And thinking, geez, another geezer - when are we going to get a hunky guy?) No big mercy, though. They intend to immobilize the head and neck, and they do.
Then for 20 minutes or so they rotate the ray guns around and you hear squeaks and see lights flash and things are repositioned and then the tech ladies return and say it's over. For today.
They keep a pretty rudimentary boom box off to the left, and today's offering was Elton John. I have nothing at all against Elton John. Indeed I have great memories of "Your Song" from college, and back then he really was a revelation: http://www.youtube.com/watch?v=mTa8U0Wa0q8.
The opening number was "Philadelphia Freedom", never before a favorite, but it has that "shine a light, shine a light" refrain which seemed to fit. After today I get to bring in my own music and I hope to impress the tech ladies with blasts of, like, Eldar, Back Door Slam, and Richard Thompson.
So this morning was the first day of radiation.
But before I get to that: when did "so" become a discourse particle? At the beginning of a sentence it used to mean "thus" or "therefore", and I guess it evolved to "And to continue my story..." which I guess is how I'm using it here and below. But now it seems to have become an opening pause word, adding some color, but with no real content. Maybe it's the more grown-up version of "like." If so, not for me:
Like, this morning was the first day of radiation.
It was kind of creepy. You are shirtless, flat on your back on a hard surface, with a gizmo that positions the neck and head. The mask they fabricated for the occasion is placed on your puss and screwed down tight. Very tight, so much so that it closed my eyes and mouth and as a result, a frisson of panic. Quickly I realized I could still breathe and the 20-something tech ladies were saying the right things. (And thinking, geez, another geezer - when are we going to get a hunky guy?) No big mercy, though. They intend to immobilize the head and neck, and they do.
Then for 20 minutes or so they rotate the ray guns around and you hear squeaks and see lights flash and things are repositioned and then the tech ladies return and say it's over. For today.
They keep a pretty rudimentary boom box off to the left, and today's offering was Elton John. I have nothing at all against Elton John. Indeed I have great memories of "Your Song" from college, and back then he really was a revelation: http://www.youtube.com/watch?v=mTa8U0Wa0q8.
The opening number was "Philadelphia Freedom", never before a favorite, but it has that "shine a light, shine a light" refrain which seemed to fit. After today I get to bring in my own music and I hope to impress the tech ladies with blasts of, like, Eldar, Back Door Slam, and Richard Thompson.
Monday, August 03, 2009
Ray Guns
So the radiation starts in a week.
I realized today - this is just one small example of how dense I am - that when I tell people I'm going in for six weeks of radiation, they may think this is really scary news. Hmm.. they can't find the primary cancer; he's going in for radiation; he looks really different...
But when I talk about the radiation, it's just another landscape, after another turn in the road. I'm not going anywhere except forward, usually in my aging blue Jetta. The handcart (I use it to drag the amp and piano around) has a flat tire and it's lashed to the bike rack. It's not scary. It's me.
Minus the beard, at least for now.
(Who is this guy? I have no idea.)
So the radiation starts in a week.
I realized today - this is just one small example of how dense I am - that when I tell people I'm going in for six weeks of radiation, they may think this is really scary news. Hmm.. they can't find the primary cancer; he's going in for radiation; he looks really different...
But when I talk about the radiation, it's just another landscape, after another turn in the road. I'm not going anywhere except forward, usually in my aging blue Jetta. The handcart (I use it to drag the amp and piano around) has a flat tire and it's lashed to the bike rack. It's not scary. It's me.
Minus the beard, at least for now.
(Who is this guy? I have no idea.)
Friday, July 24, 2009
Occult Primary
(photo: Carlyle Lake, Illinois)
If it's all gone to slo-mo lately, it's partly because I've seen fit to involve
two bureaucra-cies, Barnes and MD Anderson, and partly because it seems to be the nature of the process. Like war - long periods of boredom punctuated by brief episodes of dangerous activity.
Now, finally, I've given marching orders and we are ready to take the hill.
The debate in the final stages boiled down to two issues: the larger one, the level of radiation; and a smaller one, whether to yank some wisdom teeth before the radiation commences.
I had three options on the radiation menu: (a) none; (b) left-side-of-the-neck only; (c) or full microwave, both sides, top and bottom. No one but me likes (a) any more. Barnes is for (b). MD Anderson is for (c). I'm going with (b), the neck-only approach, even though (a) continues to be my sentimental favorite.
A couple of ideas drive my thinking, as they do in lots of contexts: Avoid the Irrevocable, and its sibling, Don't Foreclose the Future.
Mr. Irrevocable has already been in the room. The surgery involved removing lymph nodes and tissue from the left side of my neck that ain't going to grow back. But that was where I had fetched up with cancer, for god's sake, so taking it out irrevocably is hard to fault. Duh.
Next, however, we are dealing with what Secretary Rumsfeld used to call Known Unknowns. Pesky little cancers that might still be left in the area where the surgery took place. And the star of the movie, the unknown, unfound cancer that started the whole thing: the Occult Primary.*
The big dog they want to call in is radiation, a technique that seems to occupy a huge place in the world of cancer treatment. (Because it's been successful, I suppose.) There is, after all, the nice symmetry of fighting invisible cancers with invisible rays. But there is also the blunderbuss/flock of geese problem I mentioned before, and radiation has an irrevocability problem: it can cause permanent unhelpful change.
The handiest example is this tooth business. Evidently radiation can seriously impair your healing ability. So if after radiation you have to have your wisdom teeth, say, removed, the bone may not heal and it can lead to something called osteoradionecrosis of the jaw. This you do not want. Treatment can involve hyperbaric chambers.
So that's the small issue, to yank two wisdom teeth now, or not. Not because the wisdom teeth are bad, but because they might be some day, and my ability to survive the future yanking will be compromised by the radiation treatments. Sounds like: sure, yank 'em, who cares, should've done it years ago anyway. But it means two more weeks before radiation starts, and for that reason the Barnes docs - surgeon, radiation guy, and even a dentist - said to skip it. I flipped around over the weekend and indeed the first draft of this post was pro-yank. But for many reasons, the biggest of which is I just want to get on with my effing life, I'm going to take their advice and leave the teeth in the head.
With this, I have now have the roadmap. Tomorrow they make a mask. (It looks pretty cool, like something from CGI - a webby thing that holds my head in place while they zap.) Then they take a ridiculously long time to figure out the geometry, like two weeks. Then some 30 sessions, five days a week. Looks like I'll be done after the equinox but well before the first frost.
There's a long list of nasty side effects that both hospitals have spelled out in almost loving detail. Rather than post them I'll report them when and if they happen. Bottom line is that some 94-year-old grannies sail through, and some buff 25-year-olds get whiney. Unpredictable.
How the plan matches up against my rules: as to Avoiding the Irrevocable, the radiation is going to do some stuff but not as much as the full boat. As to Not Foreclosing the Future, one of the most telling things my Barnes surgeon said that if you do the full radiation boat, I won't be able to see what's going on.
I do want him to see. (It's why no-radiation is still my favorite, but I'd have to have at least one doc on my side, and I don't.) As you navigate these waters you see so many examples of how the technology is racing ahead. Doing things that are irrevocable could foreclose treatment that they don't have now, but may have in the future. I'm lucky enough to have a choice that gives me some daylight, some running room. So up and over the hill we go.
* You cannot imagine how many times I have rolled this stone over. The film version: Charlie Chan and the Occult Primary. The country & western version: I Thought I was Primary, But Now She Says I'm Just Occult. And sci-fi: Invasion of the Occult.)
(photo: Carlyle Lake, Illinois)
If it's all gone to slo-mo lately, it's partly because I've seen fit to involve
two bureaucra-cies, Barnes and MD Anderson, and partly because it seems to be the nature of the process. Like war - long periods of boredom punctuated by brief episodes of dangerous activity.
Now, finally, I've given marching orders and we are ready to take the hill.
The debate in the final stages boiled down to two issues: the larger one, the level of radiation; and a smaller one, whether to yank some wisdom teeth before the radiation commences.
I had three options on the radiation menu: (a) none; (b) left-side-of-the-neck only; (c) or full microwave, both sides, top and bottom. No one but me likes (a) any more. Barnes is for (b). MD Anderson is for (c). I'm going with (b), the neck-only approach, even though (a) continues to be my sentimental favorite.
A couple of ideas drive my thinking, as they do in lots of contexts: Avoid the Irrevocable, and its sibling, Don't Foreclose the Future.
Mr. Irrevocable has already been in the room. The surgery involved removing lymph nodes and tissue from the left side of my neck that ain't going to grow back. But that was where I had fetched up with cancer, for god's sake, so taking it out irrevocably is hard to fault. Duh.
Next, however, we are dealing with what Secretary Rumsfeld used to call Known Unknowns. Pesky little cancers that might still be left in the area where the surgery took place. And the star of the movie, the unknown, unfound cancer that started the whole thing: the Occult Primary.*
The big dog they want to call in is radiation, a technique that seems to occupy a huge place in the world of cancer treatment. (Because it's been successful, I suppose.) There is, after all, the nice symmetry of fighting invisible cancers with invisible rays. But there is also the blunderbuss/flock of geese problem I mentioned before, and radiation has an irrevocability problem: it can cause permanent unhelpful change.
The handiest example is this tooth business. Evidently radiation can seriously impair your healing ability. So if after radiation you have to have your wisdom teeth, say, removed, the bone may not heal and it can lead to something called osteoradionecrosis of the jaw. This you do not want. Treatment can involve hyperbaric chambers.
So that's the small issue, to yank two wisdom teeth now, or not. Not because the wisdom teeth are bad, but because they might be some day, and my ability to survive the future yanking will be compromised by the radiation treatments. Sounds like: sure, yank 'em, who cares, should've done it years ago anyway. But it means two more weeks before radiation starts, and for that reason the Barnes docs - surgeon, radiation guy, and even a dentist - said to skip it. I flipped around over the weekend and indeed the first draft of this post was pro-yank. But for many reasons, the biggest of which is I just want to get on with my effing life, I'm going to take their advice and leave the teeth in the head.
With this, I have now have the roadmap. Tomorrow they make a mask. (It looks pretty cool, like something from CGI - a webby thing that holds my head in place while they zap.) Then they take a ridiculously long time to figure out the geometry, like two weeks. Then some 30 sessions, five days a week. Looks like I'll be done after the equinox but well before the first frost.
There's a long list of nasty side effects that both hospitals have spelled out in almost loving detail. Rather than post them I'll report them when and if they happen. Bottom line is that some 94-year-old grannies sail through, and some buff 25-year-olds get whiney. Unpredictable.
How the plan matches up against my rules: as to Avoiding the Irrevocable, the radiation is going to do some stuff but not as much as the full boat. As to Not Foreclosing the Future, one of the most telling things my Barnes surgeon said that if you do the full radiation boat, I won't be able to see what's going on.
I do want him to see. (It's why no-radiation is still my favorite, but I'd have to have at least one doc on my side, and I don't.) As you navigate these waters you see so many examples of how the technology is racing ahead. Doing things that are irrevocable could foreclose treatment that they don't have now, but may have in the future. I'm lucky enough to have a choice that gives me some daylight, some running room. So up and over the hill we go.
* You cannot imagine how many times I have rolled this stone over. The film version: Charlie Chan and the Occult Primary. The country & western version: I Thought I was Primary, But Now She Says I'm Just Occult. And sci-fi: Invasion of the Occult.)
Monday, July 13, 2009
Wheels A-Spinning
The Houston doc concluded the last meeting with a comment: you're starting to spin your wheels. Come up with a plan and get on with it.
The Houston doc concluded the last meeting with a comment: you're starting to spin your wheels. Come up with a plan and get on with it.
(Photo: Shiloh battlefield)
Easily enough said, but there is a process involved here, and his elements of the process aren't finished. Bureaucracy, moving records around, back burnering... all contribute to the pace, which seems somewhere between slow and glacial. But no one wants to come up with a plan and get on with it more than I do.
It does appear that I'm in the final act, meeting with the radiation oncologist at Barnes on Wednesday. It could be an interesting conversation. His counterpart at MD Anderson, when advised of the radiation approach suggested by my surgeon at Barnes, said he'd never heard of it. For MD Anderson, either it's nothing (rarely, and not in my case) or it's ear to ear. The neck-only, limited treatment coming from my surgeon in St. Louis has not made it to the Gulf. I do not yet know the details, and when I talk to the radiation guy at Barnes I will find out if I'm breaking new ground.
I'm trying to understand the science, and recently asked Barnes if they thought an article by one of their pathologists was relevant. It's here:
http://www.springerlink.com/content/a6643g41362nvt1q/fulltext.pdf. They haven't told me, and maybe they never will. If I had a client who was citing me legal cases, it would piss me off.
Reading the article and similar academic stuff is work, a little like translating from the French - I do it with a dictionary. Reading Rimbaud was better.
Thursday, July 02, 2009
New Doc
The first meeting is over, and he needs more data. Not a surprise, this was really an introduction, him to me and me to him.
He did say that he was likely to recommend full-blown radiation, both sides. But they want to re-do the CAT scan, have me see their radiation oncologist, etc. All on a fairly fast track because the radiation, whatever its level, should commence within six weeks after surgery, so I have about two weeks to go.
The first meeting is over, and he needs more data. Not a surprise, this was really an introduction, him to me and me to him.
He did say that he was likely to recommend full-blown radiation, both sides. But they want to re-do the CAT scan, have me see their radiation oncologist, etc. All on a fairly fast track because the radiation, whatever its level, should commence within six weeks after surgery, so I have about two weeks to go.
MD Anderson
I'm in Houston, in the exam room which is the port of call when you see a doc in one of these places. Trailed by younger docs, tea boys, etc.
MD Anderson is big-boned and Texan, just like you'd expect.
But I've noticed that with all three hospitals I have washed up on in this little odyssey, the decorating scheme is essentially the same. The Big Bucks are at the entrance, near the gift shops and non-denominational chapels and reception desks that dwarf the people behind them. Here in Houston they seem to specialize in aquaria with tropical* fish. Texas-sized.
Then, as you progress from waiting room to waiting room and into the specialty areas, things grow less and less ornamental, more and more functional, and way less decorated, until finally you wind up in an exam room with a dying plant in the corner. Then off to a lab with scuffed floors and no windows.
Maybe they have it backwards. Perhaps we should enter into a modest, businesslike place, then at each stage things become more opulent until finally the doc is in kind of a throne room, with attendants fanning and musicians in the corner.
Just a thought.
Still waiting.
* I was thrilled to realize recently that "tropical" means something that lies between the Tropic of Cancer (guess how I got there) and the Tropic of Capricorn. And to learn that the sun signs, Cancer and Capricorn, are obsolete - times have passed and the latitudes are under new signs.
I'm in Houston, in the exam room which is the port of call when you see a doc in one of these places. Trailed by younger docs, tea boys, etc.
MD Anderson is big-boned and Texan, just like you'd expect.
But I've noticed that with all three hospitals I have washed up on in this little odyssey, the decorating scheme is essentially the same. The Big Bucks are at the entrance, near the gift shops and non-denominational chapels and reception desks that dwarf the people behind them. Here in Houston they seem to specialize in aquaria with tropical* fish. Texas-sized.
Then, as you progress from waiting room to waiting room and into the specialty areas, things grow less and less ornamental, more and more functional, and way less decorated, until finally you wind up in an exam room with a dying plant in the corner. Then off to a lab with scuffed floors and no windows.
Maybe they have it backwards. Perhaps we should enter into a modest, businesslike place, then at each stage things become more opulent until finally the doc is in kind of a throne room, with attendants fanning and musicians in the corner.
Just a thought.
Still waiting.
* I was thrilled to realize recently that "tropical" means something that lies between the Tropic of Cancer (guess how I got there) and the Tropic of Capricorn. And to learn that the sun signs, Cancer and Capricorn, are obsolete - times have passed and the latitudes are under new signs.
Tuesday, June 30, 2009
Web MD
I'm a tad embarrassed to report that the most comprehensive and accessible report I've found on what I've got is on Web MD, or its affiliate, emedicine. Kind of obvious. But I'm glad to find it. It's at http://emedicine.medscape.com/article/848892-overview.
Here is a key section on where I am:
"This section targets the treatment of patients without an identifiable primary lesion of the head and neck after a thorough examination of the head and neck, a panendoscopy, and possible neck dissection. Jesse et al demonstrated the added advantage of radiation therapy to locoregional control following the surgical removal of cervical metastases. Patients with metastatic cervical lymphadenopathy (N1-N3) had a locoregional failure rate of 13-32% when treated with surgery alone. Compare this with the locoregional failure rate of 0-18% associated with primary surgery (neck dissection) followed by adjuvant external beam radiotherapy. The research following this study further demonstrated the improvement in locoregional control of patients with occult primary squamous cell carcinoma.
"Although the value of radiation therapy has been confirmed, the field to be covered by the radiation therapy is controversial. Grau et al demonstrated the improvement of locoregional control of cancer with bilateral neck irradiation versus ipsilateral irradiation. Patients treated with ipsilateral irradiation had a relative risk of recurrence in the head and neck of 1.9 compared with patients treated with bilateral irradiation. With further research, bilateral cervical irradiation with surgical therapy improves locoregional control of cancer and is accepted as the standard of care for patients with advanced cervical disease .
"The entire pharyngeal axis is generally accepted as the mucosal sites to be included in the radiation field in patients with occult primary lesions. Theoretically, this should prevent the occurrence of the primary lesion. In order to decrease the morbidity of radiation induced xerostomia, some practitioners would not include the nasopharynx within the radiation field if the results of the endoscopy and the findings on imaging studies are negative." [All footnotes omitted]
Xerostomia, for those who don't already know, is the big-time dry mouth that you get when radiation knocks out the salivary function.
Anyway... I now have a little better feel for where I will be going on the Second Opinion Trail. With luck (I guess you call it luck) I will be at MD Anderson at the next few days.
Spooky stuff, though. Another excerpt from emedicine:
"With multimodality treatment, locoregional control of the cancer has improved in this patient population, but little improvement has occurred in overall disease-free survival. The 3- and 5-year disease-free survival rates are 40-60% and 10-25%, respectively. Prognostic factors include nodal stage at presentation, extracapsular spread, and tumor differentiation."
Let's hope that the modifier "disease-free" is what's important. We may well eventually find the mysterious primary cancer. If we do, we will knock it down, and its progeny, every time, until they stay down on the canvas for good.
I'm a tad embarrassed to report that the most comprehensive and accessible report I've found on what I've got is on Web MD, or its affiliate, emedicine. Kind of obvious. But I'm glad to find it. It's at http://emedicine.medscape.com/article/848892-overview.
Here is a key section on where I am:
"This section targets the treatment of patients without an identifiable primary lesion of the head and neck after a thorough examination of the head and neck, a panendoscopy, and possible neck dissection. Jesse et al demonstrated the added advantage of radiation therapy to locoregional control following the surgical removal of cervical metastases. Patients with metastatic cervical lymphadenopathy (N1-N3) had a locoregional failure rate of 13-32% when treated with surgery alone. Compare this with the locoregional failure rate of 0-18% associated with primary surgery (neck dissection) followed by adjuvant external beam radiotherapy. The research following this study further demonstrated the improvement in locoregional control of patients with occult primary squamous cell carcinoma.
"Although the value of radiation therapy has been confirmed, the field to be covered by the radiation therapy is controversial. Grau et al demonstrated the improvement of locoregional control of cancer with bilateral neck irradiation versus ipsilateral irradiation. Patients treated with ipsilateral irradiation had a relative risk of recurrence in the head and neck of 1.9 compared with patients treated with bilateral irradiation. With further research, bilateral cervical irradiation with surgical therapy improves locoregional control of cancer and is accepted as the standard of care for patients with advanced cervical disease .
"The entire pharyngeal axis is generally accepted as the mucosal sites to be included in the radiation field in patients with occult primary lesions. Theoretically, this should prevent the occurrence of the primary lesion. In order to decrease the morbidity of radiation induced xerostomia, some practitioners would not include the nasopharynx within the radiation field if the results of the endoscopy and the findings on imaging studies are negative." [All footnotes omitted]
Xerostomia, for those who don't already know, is the big-time dry mouth that you get when radiation knocks out the salivary function.
Anyway... I now have a little better feel for where I will be going on the Second Opinion Trail. With luck (I guess you call it luck) I will be at MD Anderson at the next few days.
Spooky stuff, though. Another excerpt from emedicine:
"With multimodality treatment, locoregional control of the cancer has improved in this patient population, but little improvement has occurred in overall disease-free survival. The 3- and 5-year disease-free survival rates are 40-60% and 10-25%, respectively. Prognostic factors include nodal stage at presentation, extracapsular spread, and tumor differentiation."
Let's hope that the modifier "disease-free" is what's important. We may well eventually find the mysterious primary cancer. If we do, we will knock it down, and its progeny, every time, until they stay down on the canvas for good.
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