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.
Monday, June 29, 2009
Back on the Trail
My surgeon's advice is in: radiation, but not radiation to the extent that many practitioners would call for, plus Careful Watching. I will see the radiation oncologist in the next few days and get the details on his proposed zapping. Dr. Haughey, the surgeon, will do the Careful Watching, which initially means coming in every eight weeks or so for a ... careful watch.
The most interesting thing about the advice is that Dr. Haughey says his treatment involves significantly less radiation therapy than most practitioners would recommend. Since the primary cancer has not been found, many would recommend radiation that is all over the head and neck. One friend of mine compares it to shooting a blunderbuss in the air and hoping a flock of geese flies by.
We'll know more soon, because the unanimous advice is that I should hit the Second Opinion Trail, and go to one of the other national cancer centers: Johns Hopkins, M.D. Anderson, Sloan-Kettering, etc. Dr. Haughey confidently predicts they will disagree with him and advise more radiation. Why? Because it's the Standard of Care.
The term is both medical and legal:
M.D. Anderson's site (and these sites are amazing) helpfully posts a definition:
Standard of care. In medicine, treatment that experts agree is appropriate, accepted and widely used. Health care providers are obligated to provide patients with the standard of care. Also called standard therapy or best practice.
In addition - I am a lawyer, after all - I know that Standard of Care is basically the medical malpractice benchmark. You look at the standard of care in the locality and that's what the doctor has to meet. Which means my surgeon is willingly taking a risk - and with a patient who he knows to be a lawyer.
You really have to like this guy.
And you have to like his advice, since it involves less radiation. Or, as one of his other patients put it, I can avoid microwaving my head.
The Second Opinion Trail will be a little unusual. Most of the people I have known who rode it were in search of better news - a way to cure themselves, or buy more time, or endure less pain. I am going out simply to confirm that the proposed treatment makes sense. As Dr. Haughey says, it boils down to a balance of mortality and quality of life. I like his balance, I like the deal, but I have to verify. This is Due Diligence, really, and this M&A lawyer has a whole lot of experience with DD. Time for a data room check.
My surgeon's advice is in: radiation, but not radiation to the extent that many practitioners would call for, plus Careful Watching. I will see the radiation oncologist in the next few days and get the details on his proposed zapping. Dr. Haughey, the surgeon, will do the Careful Watching, which initially means coming in every eight weeks or so for a ... careful watch.
The most interesting thing about the advice is that Dr. Haughey says his treatment involves significantly less radiation therapy than most practitioners would recommend. Since the primary cancer has not been found, many would recommend radiation that is all over the head and neck. One friend of mine compares it to shooting a blunderbuss in the air and hoping a flock of geese flies by.
We'll know more soon, because the unanimous advice is that I should hit the Second Opinion Trail, and go to one of the other national cancer centers: Johns Hopkins, M.D. Anderson, Sloan-Kettering, etc. Dr. Haughey confidently predicts they will disagree with him and advise more radiation. Why? Because it's the Standard of Care.
The term is both medical and legal:
M.D. Anderson's site (and these sites are amazing) helpfully posts a definition:
Standard of care. In medicine, treatment that experts agree is appropriate, accepted and widely used. Health care providers are obligated to provide patients with the standard of care. Also called standard therapy or best practice.
In addition - I am a lawyer, after all - I know that Standard of Care is basically the medical malpractice benchmark. You look at the standard of care in the locality and that's what the doctor has to meet. Which means my surgeon is willingly taking a risk - and with a patient who he knows to be a lawyer.
You really have to like this guy.
And you have to like his advice, since it involves less radiation. Or, as one of his other patients put it, I can avoid microwaving my head.
The Second Opinion Trail will be a little unusual. Most of the people I have known who rode it were in search of better news - a way to cure themselves, or buy more time, or endure less pain. I am going out simply to confirm that the proposed treatment makes sense. As Dr. Haughey says, it boils down to a balance of mortality and quality of life. I like his balance, I like the deal, but I have to verify. This is Due Diligence, really, and this M&A lawyer has a whole lot of experience with DD. Time for a data room check.
(photo: old Route 66, somewhere in Arizona, 2006)
Thursday, June 25, 2009
Cancer
I'm going back for a turn-the-page interview with my surgeon tomorrow, where he gives his opinion on how to go forward. I have a preview, which is that he will recommend only careful watching, not radiation. But more on that tomorrow, or the next day.
What has struck me throughout this process is the gonglike resonance of the word, cancer. Where does that come from? Nearly everyone knows it's not an automatic death sentence. But it seems to be uniquely scary, in its own dimension, different even from stroke. We fear it, I think, because it is alien. An invader.
The derivation sheds a little light. "Cancer" is the Latin word for crab, although the Roman physicians also used the term for the disease. Ditto the Greeks, with "carcinoma". An invading creature, with claws.
And unlike other invading creatures - germs, say -we don't really know where it comes from. It doesn't come from the outside. There aren't little cancers floating around that hop on board. This invader seems to appear on its own - we grow our own enemy.
So if that's the case, is it an alien? Or an evil version of ourselves?
In my case it's further compounded because we can't find it. It's an invisible evil-alien-doppelganger. Even more scary, I suppose.
But here's what I say: aliens don't scare me and neither do ghosts. They intrigue me. God help me, I think the whole thing is interesting. And I have never felt more alive.
I'm going back for a turn-the-page interview with my surgeon tomorrow, where he gives his opinion on how to go forward. I have a preview, which is that he will recommend only careful watching, not radiation. But more on that tomorrow, or the next day.
What has struck me throughout this process is the gonglike resonance of the word, cancer. Where does that come from? Nearly everyone knows it's not an automatic death sentence. But it seems to be uniquely scary, in its own dimension, different even from stroke. We fear it, I think, because it is alien. An invader.
The derivation sheds a little light. "Cancer" is the Latin word for crab, although the Roman physicians also used the term for the disease. Ditto the Greeks, with "carcinoma". An invading creature, with claws.
And unlike other invading creatures - germs, say -we don't really know where it comes from. It doesn't come from the outside. There aren't little cancers floating around that hop on board. This invader seems to appear on its own - we grow our own enemy.
So if that's the case, is it an alien? Or an evil version of ourselves?
In my case it's further compounded because we can't find it. It's an invisible evil-alien-doppelganger. Even more scary, I suppose.
But here's what I say: aliens don't scare me and neither do ghosts. They intrigue me. God help me, I think the whole thing is interesting. And I have never felt more alive.
Tuesday, June 16, 2009
Grey Matter
Surgery was 12 days ago and at last, an hour ago or so, the doctor reported in with the results of the pathologist. Still inconclusive. As we said in Hong Kong: ay-ya.
Maybe this will always be inconclusive, maybe there are no definite answers. We do know, more or less, that all the lymph node cancer in my neck is gone. We also think that all the suspect tissue in my mouth is gone. But what is still "grey" - my surgeon's term - is whether a radiation oncologist would recommend radiation of the neck. There is some more testing of the tissue that was taken originally that might shed further light, and they are going to proceed with this.
But it's pretty clear at this point that the answer will not be clear. So we are left with me, who has no desire to undergo radiation unless it's necessary, and my surgeon, who doesn't like it either. He likes what he calls Careful Watching (let's call that "CW"). I sure like CW too, as opposed to going in every morning for months and having some tech zap my head and neck with X-rays, and making food taste so crappy that they offer to feed you through a "peg" in your stomach.
To me the obvious question is why, if we are not sure there is anything left to worry about, do the radiation at all? If CW fails somehow, can there suddenly erupt a serious cancer that radiation would have stopped? The surgeon says he's never seen it. What's more, he says, radiation can impair CW; it can make it harder to detect the kinds of changes in cells that CW is looking for. And radiation has its own downsides - not just short-term effects - including, at the end of the spectrum, carcinogenic downsides.
But he's a cutter, not a radiation guy, and he's has a bias. He really hates the blunderbuss approach to treatment. I am struggling for an analogy - something like killing back the whole lawn in order to be sure you get the spots of crabgrass.
So back again to waiting, but I've learned to stop expecting some kind of clear denouement. It will be a judgment call based on shades of grey.
In the meantime, 12 days on, I'm up and at 'em. The only real lingering problems are a sore neck and throat and a mouth that still feels like I went to a sadistic dentist. Still numb, and food is not right. Some things taste great, like milkshakes, hence:
which my buddy Steve took at the Steak 'N Shake last week. Many other things I usually love, however, just will not go down. A great friend and cook served me a gorgeous Sockeye Salmon the other night, and I knew in my head that normally I would wolf it. Instead I pushed it around the plate like a girlyman.
The palate will come back, sooner or later. In the meantime I will not let this crisis go unexploited - and will regain the Hong Kong silhouette. Ay-ya!
-
Surgery was 12 days ago and at last, an hour ago or so, the doctor reported in with the results of the pathologist. Still inconclusive. As we said in Hong Kong: ay-ya.
Maybe this will always be inconclusive, maybe there are no definite answers. We do know, more or less, that all the lymph node cancer in my neck is gone. We also think that all the suspect tissue in my mouth is gone. But what is still "grey" - my surgeon's term - is whether a radiation oncologist would recommend radiation of the neck. There is some more testing of the tissue that was taken originally that might shed further light, and they are going to proceed with this.
But it's pretty clear at this point that the answer will not be clear. So we are left with me, who has no desire to undergo radiation unless it's necessary, and my surgeon, who doesn't like it either. He likes what he calls Careful Watching (let's call that "CW"). I sure like CW too, as opposed to going in every morning for months and having some tech zap my head and neck with X-rays, and making food taste so crappy that they offer to feed you through a "peg" in your stomach.
To me the obvious question is why, if we are not sure there is anything left to worry about, do the radiation at all? If CW fails somehow, can there suddenly erupt a serious cancer that radiation would have stopped? The surgeon says he's never seen it. What's more, he says, radiation can impair CW; it can make it harder to detect the kinds of changes in cells that CW is looking for. And radiation has its own downsides - not just short-term effects - including, at the end of the spectrum, carcinogenic downsides.
But he's a cutter, not a radiation guy, and he's has a bias. He really hates the blunderbuss approach to treatment. I am struggling for an analogy - something like killing back the whole lawn in order to be sure you get the spots of crabgrass.
So back again to waiting, but I've learned to stop expecting some kind of clear denouement. It will be a judgment call based on shades of grey.
In the meantime, 12 days on, I'm up and at 'em. The only real lingering problems are a sore neck and throat and a mouth that still feels like I went to a sadistic dentist. Still numb, and food is not right. Some things taste great, like milkshakes, hence:
which my buddy Steve took at the Steak 'N Shake last week. Many other things I usually love, however, just will not go down. A great friend and cook served me a gorgeous Sockeye Salmon the other night, and I knew in my head that normally I would wolf it. Instead I pushed it around the plate like a girlyman.
The palate will come back, sooner or later. In the meantime I will not let this crisis go unexploited - and will regain the Hong Kong silhouette. Ay-ya!
-
Wednesday, June 10, 2009
Sunday, June 07, 2009
Surgery
This will be long and detailed, and a little graphic, so maybe I should start with a headline. A million years or so ago I was a journalist and did headlines, and they are cool little puzzles. Capture the piece; make it sound interesting; don't split infinitives or prepositional phrases at the end of the line; try to fit it into the column but don't be slavish about it; try to use active voice. I suppose there are many more rules; I think I made these up. Didn't go to J-school. Anyway, for this one:
Morgan Out of Surgery and Back Home;
A Bunch of Stuff Out, But Some Aspects
Still Inconclusive and Await Pathology
And then you go into that inverted paragraph who-what-when-where-why motif and design the piece so the last graphs can be cut off. Not here; this isn't news, it's a blog.
Now. Assuming I haven't shaken you and you're still reading, here goes:
We got to Barnes around 11 am on Thursday after a lot of confusion about the starting time. It's kind of a moving target anyway; the surgeon doesn't really know how long the preceding one will take. By about 2 pm they were ready to go, explaining the drill. A short conversation with the surgeon, and a slightly longer one with the anesthesiologist. Expected to take about 5 hours, so I thought I'd come back up around 7 pm.
A friend with a great sense of the absurd suggested that I try to savor the buzz as I was going under. A good idea, had I been at Fillmore East. As it was, the last thing I remember was getting wheeled down a corridor.
Next thing I know I'm waking up and looking a clock. It says 7. But there is something odd about the light, and I feel like I have a log shoved down my throat. Turns out it was 7 am Friday morning. The surgery had gone longer and later than expected, and the doctor was worried about my breathing as I was sedated through the night. Hence the big-ass breathing tube. Believe me, they are to be avoided at all cost. I had my wrists tied to the bed to keep me from waking up and yanking it out.
Someone did come and take it out, mercifully, but then I realized I was still way tubed up. A drain from my neck - I had this before, not a big deal - and a feeding tube down my nose and into my stomach. Very unpleasant and only there because I might not be able to eat and it was better to put it in during surgery than later, through the lacerated throat. So it was, at that point, pointless. Plus a catheter. I was an ingress-egress machine.
The feeding tube became a real driver. I wanted that baby out of there, and they said it would only come out if I could demonstrate that I could get nutrition down. So I downed everything I could stand, which wasn't much. Eventually I focused on tepid milk. Twenty-four hours later it was pulled out by a pretty good-looking female doc.
The surgery had not gone exactly as planned. The concept was that (a) we would look around inside the oral cavity with a microscope, find the primary, laser it out, then (b) go and take out the remaining cancerous lymph nodes on and take them out in a neck resection. All the activity was to be on the left side of my head and neck. Turned out (a) was inconclusive, the primary cancer not seen; but the doc did spot a precancerous lesion, maybe, on the right side of the cavity and took it out. I have the feeling he wanted something to show for the effort. Apparently it was hard work, because I have a relatively small cavity, and he had navigational problems. And I always thought I had a big mouth.
So he removed a lot of vestigial tonsils (if for some reason you've been following this story, you'll remember I had my tonsils taken out, I thought, in the 1950's) and then went on to part (b) and took out a chunk of my neck on the left side. Uneventful. Now the whole mess goes to Dr. Pathology and he works his magic, looking to see if we did, in fact, find the primary. At this point, maybe. But maybe not, which will throw me back to the whole radiation/chemo possibility, which is the bad part.
Two more nights in the hospital, and nights in a hospital are just lousy. The technique seems to be not to care about uninterrupted sleep, but rather to show up every couple of hours, turn on bright lights, wheel in a device, and inject something into your veins or take blood out or take your temp or check your blood pressure, and the people who are doing it although really nice look increasing like denizens of the Star Wars Cantina as the hours go by. Which they do slowly.
Plus it was a double room, and my roommate was a very sick dude. He was five feet away, on the other side of a curtain.
I lobbied for an early release on Saturday and lost. So I became Mr. Positive, eating as much as I could, strolling around, chatting up the staff, bucking up my roommate, in order to establish my creds and get the hell out of the place. Sorry. Even though they are staffed by really nice people, I do not like hospitals. I can't shake the notions that they are giant petrie dishes and people go there to die.
This morning the docs said I was "extraordinary." So Mr. Positive got sprung.
I'm now home with just the neck drain, which is not pretty, and a Frankenstein's monster scar along the jawline, and a swelled neck, but everyone is saying I look great. Which may mean I am surrounded by flatterers, but I'll take it.
From here, taking a lot of pills, can't lift over 10 pounds, and back to waiting.
This will be long and detailed, and a little graphic, so maybe I should start with a headline. A million years or so ago I was a journalist and did headlines, and they are cool little puzzles. Capture the piece; make it sound interesting; don't split infinitives or prepositional phrases at the end of the line; try to fit it into the column but don't be slavish about it; try to use active voice. I suppose there are many more rules; I think I made these up. Didn't go to J-school. Anyway, for this one:
Morgan Out of Surgery and Back Home;
A Bunch of Stuff Out, But Some Aspects
Still Inconclusive and Await Pathology
And then you go into that inverted paragraph who-what-when-where-why motif and design the piece so the last graphs can be cut off. Not here; this isn't news, it's a blog.
Now. Assuming I haven't shaken you and you're still reading, here goes:
We got to Barnes around 11 am on Thursday after a lot of confusion about the starting time. It's kind of a moving target anyway; the surgeon doesn't really know how long the preceding one will take. By about 2 pm they were ready to go, explaining the drill. A short conversation with the surgeon, and a slightly longer one with the anesthesiologist. Expected to take about 5 hours, so I thought I'd come back up around 7 pm.
A friend with a great sense of the absurd suggested that I try to savor the buzz as I was going under. A good idea, had I been at Fillmore East. As it was, the last thing I remember was getting wheeled down a corridor.
Next thing I know I'm waking up and looking a clock. It says 7. But there is something odd about the light, and I feel like I have a log shoved down my throat. Turns out it was 7 am Friday morning. The surgery had gone longer and later than expected, and the doctor was worried about my breathing as I was sedated through the night. Hence the big-ass breathing tube. Believe me, they are to be avoided at all cost. I had my wrists tied to the bed to keep me from waking up and yanking it out.
Someone did come and take it out, mercifully, but then I realized I was still way tubed up. A drain from my neck - I had this before, not a big deal - and a feeding tube down my nose and into my stomach. Very unpleasant and only there because I might not be able to eat and it was better to put it in during surgery than later, through the lacerated throat. So it was, at that point, pointless. Plus a catheter. I was an ingress-egress machine.
The feeding tube became a real driver. I wanted that baby out of there, and they said it would only come out if I could demonstrate that I could get nutrition down. So I downed everything I could stand, which wasn't much. Eventually I focused on tepid milk. Twenty-four hours later it was pulled out by a pretty good-looking female doc.
The surgery had not gone exactly as planned. The concept was that (a) we would look around inside the oral cavity with a microscope, find the primary, laser it out, then (b) go and take out the remaining cancerous lymph nodes on and take them out in a neck resection. All the activity was to be on the left side of my head and neck. Turned out (a) was inconclusive, the primary cancer not seen; but the doc did spot a precancerous lesion, maybe, on the right side of the cavity and took it out. I have the feeling he wanted something to show for the effort. Apparently it was hard work, because I have a relatively small cavity, and he had navigational problems. And I always thought I had a big mouth.
So he removed a lot of vestigial tonsils (if for some reason you've been following this story, you'll remember I had my tonsils taken out, I thought, in the 1950's) and then went on to part (b) and took out a chunk of my neck on the left side. Uneventful. Now the whole mess goes to Dr. Pathology and he works his magic, looking to see if we did, in fact, find the primary. At this point, maybe. But maybe not, which will throw me back to the whole radiation/chemo possibility, which is the bad part.
Two more nights in the hospital, and nights in a hospital are just lousy. The technique seems to be not to care about uninterrupted sleep, but rather to show up every couple of hours, turn on bright lights, wheel in a device, and inject something into your veins or take blood out or take your temp or check your blood pressure, and the people who are doing it although really nice look increasing like denizens of the Star Wars Cantina as the hours go by. Which they do slowly.
Plus it was a double room, and my roommate was a very sick dude. He was five feet away, on the other side of a curtain.
I lobbied for an early release on Saturday and lost. So I became Mr. Positive, eating as much as I could, strolling around, chatting up the staff, bucking up my roommate, in order to establish my creds and get the hell out of the place. Sorry. Even though they are staffed by really nice people, I do not like hospitals. I can't shake the notions that they are giant petrie dishes and people go there to die.
This morning the docs said I was "extraordinary." So Mr. Positive got sprung.
I'm now home with just the neck drain, which is not pretty, and a Frankenstein's monster scar along the jawline, and a swelled neck, but everyone is saying I look great. Which may mean I am surrounded by flatterers, but I'll take it.
From here, taking a lot of pills, can't lift over 10 pounds, and back to waiting.
Monday, June 01, 2009
Lucky
(The photo: moonrise over the Grand Canyon.)
You bet I'm lucky. No matter where this goes.
My whole thing about the Big Guy is that that he's the one I say thanks to. That's my belief system, such as it is.
Family, friends, clients, the firm, the band, a pretty active imagination and about to enter my 60th year on the planet. Lucky man I am, and grateful.
You bet I'm lucky. No matter where this goes.
My whole thing about the Big Guy is that that he's the one I say thanks to. That's my belief system, such as it is.
Family, friends, clients, the firm, the band, a pretty active imagination and about to enter my 60th year on the planet. Lucky man I am, and grateful.
Saturday, May 30, 2009
Countdown
I'm sure there are many very bad things about dealing with cancer, practically none of which I have yet encountered. The only one I seem to be struggling with so far is... waiting.
Waiting in waiting rooms (well, that's what they are for, I guess.) Waiting in examination rooms (Mrs. Strays and I spent two hours in one - I was reduced to Hulu on the laptop.) And mostly waiting all day long, every day, for the next big step, which at this point is surgery. Thursday June 4, less than a week away. The only interesting thing in the meantime is that I go in around noon and will have had to fast since the midnight before. An opportunity to shed a few, but I will be powerful hongry.
One really does think about it most of the time. Wake up: oh yeah, I've got cancer. Get a headache: is it because I've got cancer? People who don't know ask: "How ya doin'?" "Great." (Thinking, kind of ironic.) People who do know, serious face: "So, how are you?" "Great, x days to surgery". (Thinking, amazing how great everyone is, but also does this person want to hear a longer version? Hope not.)
And you see references to cancer and terminal illness all over the place, and they certainly take on a new resonance. Is there a mini-economy, apart from medicine, based on all this?
So, the countdown. Five days to go.
I'm sure there are many very bad things about dealing with cancer, practically none of which I have yet encountered. The only one I seem to be struggling with so far is... waiting.
Waiting in waiting rooms (well, that's what they are for, I guess.) Waiting in examination rooms (Mrs. Strays and I spent two hours in one - I was reduced to Hulu on the laptop.) And mostly waiting all day long, every day, for the next big step, which at this point is surgery. Thursday June 4, less than a week away. The only interesting thing in the meantime is that I go in around noon and will have had to fast since the midnight before. An opportunity to shed a few, but I will be powerful hongry.
One really does think about it most of the time. Wake up: oh yeah, I've got cancer. Get a headache: is it because I've got cancer? People who don't know ask: "How ya doin'?" "Great." (Thinking, kind of ironic.) People who do know, serious face: "So, how are you?" "Great, x days to surgery". (Thinking, amazing how great everyone is, but also does this person want to hear a longer version? Hope not.)
And you see references to cancer and terminal illness all over the place, and they certainly take on a new resonance. Is there a mini-economy, apart from medicine, based on all this?
So, the countdown. Five days to go.
Wednesday, May 27, 2009
More Labels
One my better (well, I think so) posts dealt with labels, and how they raise questions, but here I have another type of label in mind: the unfamiliar terms that professions use to describe what they do, and in particular the terms my surgeon is using to describe what he's planning to do:
Microlaryngoscopy with transoral C02 laser survery of the primary, left palatine tonsillectomy, left lingual tonsillectomy, and completion left neck dissection.
Taken from his assistant's email. OK, let's break it down.
Microlaryngoscopy
This is what he's planning to do with the microscope, that is, going down my throat and looking for the elusive primary cancer
with transoral C02 laser
and if he finds it, with a laser, conducting a
survery of the primary
What in the world is survery? A typo, probably, "v" and "g" aren't that far apart... so it certainly could be surgery. Or survey, which Google favors. As with most misspelled words, there are dozens of "survery" examples out there but they seem to mean survey.
left palatine tonsillectomy, left lingual tonsillectomy,
And I thought I'd done with my tonsils back in 1955. There are evidently little residual flaps of tonsil (OK, that's not for the squeamish) that he finds candidates for complete, 50+ year-later elimination
and completion left neck dissection.
Which is the part that was always going to happen. Taking out the lymph nodes and surrounding tissue. There is a history here, I heard about it a little from Doctor No. 1. This procedure was once pretty massive - they took out a whole lotta neck - and has since been scaled back so I get to keep things like nerves and arteries. It was developed in the early 20th century by a well-known Clevelander, Dr. Crile, who started the Cleveland Clinic. (And whose grandson was a terrific but controversial journalist.) They had a place out in Painesville, I think, called Little Mountain. Always thought it was a great name... or better yet, a great label.
One my better (well, I think so) posts dealt with labels, and how they raise questions, but here I have another type of label in mind: the unfamiliar terms that professions use to describe what they do, and in particular the terms my surgeon is using to describe what he's planning to do:
Microlaryngoscopy with transoral C02 laser survery of the primary, left palatine tonsillectomy, left lingual tonsillectomy, and completion left neck dissection.
Taken from his assistant's email. OK, let's break it down.
Microlaryngoscopy
This is what he's planning to do with the microscope, that is, going down my throat and looking for the elusive primary cancer
with transoral C02 laser
and if he finds it, with a laser, conducting a
survery of the primary
What in the world is survery? A typo, probably, "v" and "g" aren't that far apart... so it certainly could be surgery. Or survey, which Google favors. As with most misspelled words, there are dozens of "survery" examples out there but they seem to mean survey.
left palatine tonsillectomy, left lingual tonsillectomy,
And I thought I'd done with my tonsils back in 1955. There are evidently little residual flaps of tonsil (OK, that's not for the squeamish) that he finds candidates for complete, 50+ year-later elimination
and completion left neck dissection.
Which is the part that was always going to happen. Taking out the lymph nodes and surrounding tissue. There is a history here, I heard about it a little from Doctor No. 1. This procedure was once pretty massive - they took out a whole lotta neck - and has since been scaled back so I get to keep things like nerves and arteries. It was developed in the early 20th century by a well-known Clevelander, Dr. Crile, who started the Cleveland Clinic. (And whose grandson was a terrific but controversial journalist.) They had a place out in Painesville, I think, called Little Mountain. Always thought it was a great name... or better yet, a great label.
Friday, May 22, 2009
Wednesday, May 20, 2009
Different Deal
And a better one. So here's the reason why you go the best hospital in town: they come up with better treatment.
Based on the same facts, the new doctor on the scene - his name is Bruce Haughey - has a different, and much less burdensome, treatment. The old plan was to (a) remove the cancerous nodes and surrounding tissue from the neck (b) do some "random biopsies" to try to find the primary cancer, and (c) follow up with radiation and, maybe, chemotherapy. The new guy will stick with (a), has a different approach to (b), and thereby will probably eliminate the need for (c).
Dr. Haughey is a self-confident New Zealander and the Director of Head and Neck Surgical Oncology at Barnes*. He said that what I have is quite common, and they have developed a process for it that has been very successful. His approach is to use a microscope to look for the primary cancer during the surgery and if he finds it, which he usually does, excise it with a laser. It is usually identified during that process and a followup biopsy of the removed tissue. Then, no need for radiation or chemo. Mrs. Strays asked the logical question why we hadn't heard about this procedure before. He said probably because he hadn't published it yet.
Well, yahoo. The surgery never bothered me. In fact I can't wait - it is strange to wake up every morning knowing you have cancer in your neck, and I'd like to get past it. But I was not looking forward to radiation, which was certain, or chemo, which was possible.
Dr. Haughey gave me the standard disclaimers, and can't guarantee no radiation. But it is a very different future. With this, I may well be back up and getting on with the rest of my life by mid-June. Yippee kai-yay.
* The name of the place is kind of a mess. So far I have about six: Barnes, Barnes-Jewish, BJC, Washington University School of Medicine, Center for Advanced Medicine, Siteman Cancer Center. I know there are some real distinctions between the hospital and the university; but the rest, I guess, is a mash of history and marketing.
And a better one. So here's the reason why you go the best hospital in town: they come up with better treatment.
Based on the same facts, the new doctor on the scene - his name is Bruce Haughey - has a different, and much less burdensome, treatment. The old plan was to (a) remove the cancerous nodes and surrounding tissue from the neck (b) do some "random biopsies" to try to find the primary cancer, and (c) follow up with radiation and, maybe, chemotherapy. The new guy will stick with (a), has a different approach to (b), and thereby will probably eliminate the need for (c).
Dr. Haughey is a self-confident New Zealander and the Director of Head and Neck Surgical Oncology at Barnes*. He said that what I have is quite common, and they have developed a process for it that has been very successful. His approach is to use a microscope to look for the primary cancer during the surgery and if he finds it, which he usually does, excise it with a laser. It is usually identified during that process and a followup biopsy of the removed tissue. Then, no need for radiation or chemo. Mrs. Strays asked the logical question why we hadn't heard about this procedure before. He said probably because he hadn't published it yet.
Well, yahoo. The surgery never bothered me. In fact I can't wait - it is strange to wake up every morning knowing you have cancer in your neck, and I'd like to get past it. But I was not looking forward to radiation, which was certain, or chemo, which was possible.
Dr. Haughey gave me the standard disclaimers, and can't guarantee no radiation. But it is a very different future. With this, I may well be back up and getting on with the rest of my life by mid-June. Yippee kai-yay.
* The name of the place is kind of a mess. So far I have about six: Barnes, Barnes-Jewish, BJC, Washington University School of Medicine, Center for Advanced Medicine, Siteman Cancer Center. I know there are some real distinctions between the hospital and the university; but the rest, I guess, is a mash of history and marketing.
Monday, May 18, 2009
Picking the Joint
So, here's where it comes out on the Teaching Hospital v. Other Good Hospital debate.
If you are dealing with something where you have a life expectancy statistic:
So, here's where it comes out on the Teaching Hospital v. Other Good Hospital debate.
If you are dealing with something where you have a life expectancy statistic:
- do the homework
- go with the best hospital for that area of disease
- to which you can have reasonable access.
On the other hand, if life expectancy isn't really an issue:
- do the homework
- go with the hospital that has an established practice in that area of disease
- to which you can have comfortable access.
Teaching v. non-teaching is not necessarily the driver. A very smart doctor I was with the other night had several examples where the teaching hospital was not necessarily the best in town.
Wednesday, May 13, 2009
Tuesday, May 12, 2009
The Big C
Well, the Republic of Equity is going to have to wait a bit. The Dictators of Debt can continue their evil ways without my stuff, and I'm sure they're relieved. I have a bigger, more personal, and much easier-to-write-about thing going on.
I have cancer.
The road here:
A soft-spoken well-dressed guy I have known a little for years was taking over as my dentist. Our first visit was mid-March, and he does this macro head exam, taking casts, making models, shooting x-rays and photos and generally poking around. Plus he felt my neck, and, with his fingers on the left side, said "What's that?" I said, "Dunno." He said, "Get it checked out." He was quite insistent. "Get it checked out right away."
I had noticed it before, while shaving. I thought it was a sort of muscle, kind of buff. That's it.
So for the next six weeks I went through appointments broken and met, no big sense of urgency. First my regular doc, who sent me to an ENT, who did what's called a needle biopsy, and that didn't show him enough, so I went in for a real cut, under general anesthesia for the first time since I was five. (That was for a tonsillectomy.) He said the results would usually be - I like this term, it has a certain hauteur - "unimportant."
They put a drain, not a lot of fun, in the neck for the next couple of days, and upon my going in to have it dismantled and removed it fell to the nurse practitioner to reveal that the results were, well, important. Cancer in the lymph node.
I wish none of this were happening to me, obviously, but it's pretty interesting. The lymphatic system acts like a little storm sewer system in the body, separately from but in coordination with the blood circulatory system. Cancer cells travel to lymph nodes, and accumulate there. That's what they found. The cancer is metastatic, which means the cells are coming from a primary cancer somewhere else.
So the next step, of which I'm in the middle,* is to find the primary cancer. The first step was a PET scan.
PET scans are one of these jobs where you lie down on a tray and they move your body in and out of a tube. Fine, but they take a while and I was desperate for reading material. I resolved to memorize great speeches or great poetry so I can reel them out at future such times. As it was, I tried making lists, the first being a list of old girlfriends. I told this to the techies who run the machine and they loved it. (I wish their lives, by the way, on nobody.)
Yesterday we** met with a radiation oncologist, who tells you what to expect, generally, from the radiation treatments that are almost surely ahead. He gave us a first report on the PET scan and it sounded good. No evident cancer outside the head and neck. Something may going on with the right side, in an epiglottic fold***, but it may not be what they are looking for. All of this is pretty consistent with the better-case predictions I had heard.
Now on to the decision to move from the suburban hospital where all this has taken place so far, to a city teaching hospital, which is what practically everyone says to do. In particular, move to the Siteman Cancer Center at Barnes, which does indeed sound like a first-class place. I don't know the pros and cons. Why wouldn't everyone do this? Cost? Doubtful, I don't think the teaching hospitals are any more expensive for those of us who are insured. (And they are more likely to take on the uninsured.) Suburbitis? (You know, too many black folks in the waiting rooms at those big downtown hospitals...) Maybe, but that's not me. The doctors? My guy at Suburb Hospital, which itself has a terrific reputation, said it is comprised mainly of docs from Barnes (Washington University, actually) who don't want to teach. So they play more golf? OK, fine, but to me... unimportant.
********************************************************************************
* Up with this I will not put! - WC
** "We" ain't royal. We is me and Mrs. Strays.
*** The Epliglottic Fold sounds, to me, like a place where Jabba the Hutt might hang out.
Well, the Republic of Equity is going to have to wait a bit. The Dictators of Debt can continue their evil ways without my stuff, and I'm sure they're relieved. I have a bigger, more personal, and much easier-to-write-about thing going on.
I have cancer.
The road here:
A soft-spoken well-dressed guy I have known a little for years was taking over as my dentist. Our first visit was mid-March, and he does this macro head exam, taking casts, making models, shooting x-rays and photos and generally poking around. Plus he felt my neck, and, with his fingers on the left side, said "What's that?" I said, "Dunno." He said, "Get it checked out." He was quite insistent. "Get it checked out right away."
I had noticed it before, while shaving. I thought it was a sort of muscle, kind of buff. That's it.
So for the next six weeks I went through appointments broken and met, no big sense of urgency. First my regular doc, who sent me to an ENT, who did what's called a needle biopsy, and that didn't show him enough, so I went in for a real cut, under general anesthesia for the first time since I was five. (That was for a tonsillectomy.) He said the results would usually be - I like this term, it has a certain hauteur - "unimportant."
They put a drain, not a lot of fun, in the neck for the next couple of days, and upon my going in to have it dismantled and removed it fell to the nurse practitioner to reveal that the results were, well, important. Cancer in the lymph node.
I wish none of this were happening to me, obviously, but it's pretty interesting. The lymphatic system acts like a little storm sewer system in the body, separately from but in coordination with the blood circulatory system. Cancer cells travel to lymph nodes, and accumulate there. That's what they found. The cancer is metastatic, which means the cells are coming from a primary cancer somewhere else.
So the next step, of which I'm in the middle,* is to find the primary cancer. The first step was a PET scan.
PET scans are one of these jobs where you lie down on a tray and they move your body in and out of a tube. Fine, but they take a while and I was desperate for reading material. I resolved to memorize great speeches or great poetry so I can reel them out at future such times. As it was, I tried making lists, the first being a list of old girlfriends. I told this to the techies who run the machine and they loved it. (I wish their lives, by the way, on nobody.)
Yesterday we** met with a radiation oncologist, who tells you what to expect, generally, from the radiation treatments that are almost surely ahead. He gave us a first report on the PET scan and it sounded good. No evident cancer outside the head and neck. Something may going on with the right side, in an epiglottic fold***, but it may not be what they are looking for. All of this is pretty consistent with the better-case predictions I had heard.
Now on to the decision to move from the suburban hospital where all this has taken place so far, to a city teaching hospital, which is what practically everyone says to do. In particular, move to the Siteman Cancer Center at Barnes, which does indeed sound like a first-class place. I don't know the pros and cons. Why wouldn't everyone do this? Cost? Doubtful, I don't think the teaching hospitals are any more expensive for those of us who are insured. (And they are more likely to take on the uninsured.) Suburbitis? (You know, too many black folks in the waiting rooms at those big downtown hospitals...) Maybe, but that's not me. The doctors? My guy at Suburb Hospital, which itself has a terrific reputation, said it is comprised mainly of docs from Barnes (Washington University, actually) who don't want to teach. So they play more golf? OK, fine, but to me... unimportant.
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* Up with this I will not put! - WC
** "We" ain't royal. We is me and Mrs. Strays.
*** The Epliglottic Fold sounds, to me, like a place where Jabba the Hutt might hang out.
Tuesday, March 10, 2009
Friday, March 06, 2009
I Am Starting to Get It
There was a book or a blog or something that was pushed at me for years called Empire of Debt. It predicted pretty much what is happening now.
They were obviously right but I think they got the metaphor wrong - at least if it's trying to describe the problem. The problem is not that it's an empire - it may be, but that's more of a descriptor than a critique - the problem is that it is a Dictatorship of Debt.
Hence AIG. Hence the US government, the ultimate debt junkie. Hence Goldman Sachs, which I am sure is well on its way to becoming the next Trilateral Commission in the eyes of the conspiracy theorists.
Their solutions are all based on the idea of reinflation through debt. Defer the problem to the next generation and the next and the next; stand at the arterial money flows and siphon off small percentages of huge torrents of cash; shrink the number of players at the top. (Bye-bye Lehman - too bad you didn't have enough friends on the way down.)
The answer for the revolutionaries: convert the Dictatorship of Debt into the Republic of Equity.
More later. Back to work. Keep the day job.
********************************************************
There was a book or a blog or something that was pushed at me for years called Empire of Debt. It predicted pretty much what is happening now.
They were obviously right but I think they got the metaphor wrong - at least if it's trying to describe the problem. The problem is not that it's an empire - it may be, but that's more of a descriptor than a critique - the problem is that it is a Dictatorship of Debt.
Hence AIG. Hence the US government, the ultimate debt junkie. Hence Goldman Sachs, which I am sure is well on its way to becoming the next Trilateral Commission in the eyes of the conspiracy theorists.
Their solutions are all based on the idea of reinflation through debt. Defer the problem to the next generation and the next and the next; stand at the arterial money flows and siphon off small percentages of huge torrents of cash; shrink the number of players at the top. (Bye-bye Lehman - too bad you didn't have enough friends on the way down.)
The answer for the revolutionaries: convert the Dictatorship of Debt into the Republic of Equity.
More later. Back to work. Keep the day job.
********************************************************
Friday, January 30, 2009
No. 2: Baskets O' Loans
Is our ability to deal with the downward drop in residential real estate impaired by the fact that economic ownership of the mortgages is scattered - held "out there" in the market? How do you administer that?
Well, wait. There is someone - let's call him the Collection Agent - who is in the chain and has a list of debtors. When they make a payment, the CA checks it off, takes a little piece, and sends the balance along. At the other end there is someone - let's call him the Distribution Agent. When money rolls in the DA looks at his list of holders, checks them off, takes a little piece, and sends them their share.
So the CA knows who is going into foreclosure and the DA knows who is going to have to take less than expected.
So this time, in contrast to No. 1 below:
When it's time for the debtor to give up, he surrenders ownership of the house to the CA (which holds for the ultimate owners) but the debtor can continue to live there as a tenant. Rent is enough to cover major maintenance, insurance, taxes, and costs of administration of the arrangment by the CA and the DA, but zero is applied to debt service. The tenant has to keep the place up. The ultimate owners keep the loan for, let's say, 10 years. At the end, or if the property can't keep a tenant on those terms in the meantime, it's sold and then the CA, the DA, and the ultimately owners divvy up any proceeds.
Is our ability to deal with the downward drop in residential real estate impaired by the fact that economic ownership of the mortgages is scattered - held "out there" in the market? How do you administer that?
Well, wait. There is someone - let's call him the Collection Agent - who is in the chain and has a list of debtors. When they make a payment, the CA checks it off, takes a little piece, and sends the balance along. At the other end there is someone - let's call him the Distribution Agent. When money rolls in the DA looks at his list of holders, checks them off, takes a little piece, and sends them their share.
So the CA knows who is going into foreclosure and the DA knows who is going to have to take less than expected.
So this time, in contrast to No. 1 below:
When it's time for the debtor to give up, he surrenders ownership of the house to the CA (which holds for the ultimate owners) but the debtor can continue to live there as a tenant. Rent is enough to cover major maintenance, insurance, taxes, and costs of administration of the arrangment by the CA and the DA, but zero is applied to debt service. The tenant has to keep the place up. The ultimate owners keep the loan for, let's say, 10 years. At the end, or if the property can't keep a tenant on those terms in the meantime, it's sold and then the CA, the DA, and the ultimately owners divvy up any proceeds.
Thursday, January 29, 2009
Solving the Crisis, One Issue at a Time
No. 1: Foreclosed Homes
I'm starting to get it. The torrent of words that is roaring past on the economic crisis is at levels of 5000, 10,000, 25,000 feet. Way over the head of the problems. Leaving us with: put new money in giant institutions at the top of the pyramid and eventually we can all borrow our way back to health. And now add this: let's couple it with WPA 2009.
Nah. Break it into pieces and fix each piece.
Today: the huge inventory of foreclosed homes, which is expected to grow even larger.
Our traditional approach - throw out the debtor and auction off the property - is a fair way to get back to true value but on a massive scale it is just going to dig a massive short-term hole.
Instead: when it's time for the debtor to give up, he surrenders ownership of the house to the bank but can continue to live there as a tenant. Rent is enough to cover major maintenance, insurance, taxes, and costs of administration of the arrangment by the bank, but zero is applied to debt service. The tenant has to keep the place up. The bank does not have to write down the asset - so long as it can keep a tenant in there on that basis, it can keep the loan on its books in full. For, let's say, 10 years. At the end, or if the bank can't find a tenant on those terms in the meantime, it's sold and then the bank takes the loss. Or keeps the gain.
Takes no new cash, stablizes the residential market.
Next: homes where the debt is parcelled out and held in securitized pools.
No. 1: Foreclosed Homes
I'm starting to get it. The torrent of words that is roaring past on the economic crisis is at levels of 5000, 10,000, 25,000 feet. Way over the head of the problems. Leaving us with: put new money in giant institutions at the top of the pyramid and eventually we can all borrow our way back to health. And now add this: let's couple it with WPA 2009.
Nah. Break it into pieces and fix each piece.
Today: the huge inventory of foreclosed homes, which is expected to grow even larger.
Our traditional approach - throw out the debtor and auction off the property - is a fair way to get back to true value but on a massive scale it is just going to dig a massive short-term hole.
Instead: when it's time for the debtor to give up, he surrenders ownership of the house to the bank but can continue to live there as a tenant. Rent is enough to cover major maintenance, insurance, taxes, and costs of administration of the arrangment by the bank, but zero is applied to debt service. The tenant has to keep the place up. The bank does not have to write down the asset - so long as it can keep a tenant in there on that basis, it can keep the loan on its books in full. For, let's say, 10 years. At the end, or if the bank can't find a tenant on those terms in the meantime, it's sold and then the bank takes the loss. Or keeps the gain.
Takes no new cash, stablizes the residential market.
Next: homes where the debt is parcelled out and held in securitized pools.
Monday, January 05, 2009
Saturday, January 03, 2009
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