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!
Tuesday, September 15, 2009
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.)
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