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.
Monday, August 24, 2009
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.
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