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.
Tuesday, June 30, 2009
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.
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