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.
Thursday, June 25, 2009
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.
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