Sun Tsu has written a few pieces of advice. I didn't heed them because he was writing on the art of war, and, as I've explained before, I have a hard time thinking of the cancer thing as a battle.
Sun Tsu's recommendation is that one should not underestimate one's enemy.
I underestimated radiation. I had my eye on the end-of-chemo-date as the prize, thinking that the next Big Thing in cancer treatment would not be much of a big thing at all. I thought it'd be a breeze.
Turns out that a "breeze" in the middle of December in Colorado is pretty uncomfortable. It would have been better if I went into radiation expecting a nightmare. Just think of how pleasantly surprised I'd have been!
So the Mayfield sympathizers among you are thinking, "See, Amy? You would have done well to be a little more martial in your approach. The war metaphor would have served you effectively here."
But is radiation really my enemy? No, no. It's my friend. At least, my enemy is cancer (this much we agree on) and the enemy of cancer is radiation, and Sun Tsu did say that the enemy of my enemy is my friend.
I'm pretty sure he didn't have anything to say about under or over estimation of a friend's ability to burn out living tissue by means of relentless application.
So, again, we find the military metaphor coming up short.
In any case, I am over the shock of the realities of radiation. 1 week down, 6 weeks to go.
That first week was also accompanied by a snow storm and single-digit temperatures, all of which does not impress my Chicagoland readers as being all that terrible, but I have gone soft, friends. And it was miserable to drive in. And, don't forget, I'm also bald, which turns all things "cold" into things that are "awful damn cold."
But the sun came out today! We reached mid-50's! The snow is melted from the streets and I can look forward to my commute to the cancer center as 40 minutes of me-time.
I even checked out a book on CD for my own edification. Titled Manhunt, it's the story of the 12 day search for John Wilkes Boothe. Educational, interesting and yet completely irrelevant to my actual life. It's the trifecta of reading material.
So, then, just a few remarks to follow up on what I've reported from the first week:
1. I asked about the hole in the ceiling panel. Shared my observation that it didn't look very official. The tech--and they are all very nice women, these techs who zap me--shrugged and said, "We just needed a hole."
Then the other pointed out that the two side laser machines were housed in cabinets, the doors of which had been carved through as well. "It makes it so much nicer in here!" she said, meaning that it was "nicer" for these two machines to be covered instead of exposed.
I gestured at the enormous radiation machined in the middle of the room with the movable slab below it and said, "Yeah, those cabinets really make a difference. . ."
2. I offered to bring them a pack of washable markers. "I could get 8 of them for you for a mere 3 bucks! My treat!"
But, no. They have to use FDA approved surgical markers that cost $8 a piece and can only be used on one patient (that I understand). They write the patient's name on her marker and then stick it into a specially-designed marker-holder that, I'm guessing, cost about a hundred bucks.
3. Side effects: I have the expected ones. . . fatigue in that arm, a soreness in the treated area. But it's a soreness that feels like a lactic acid burn that comes after working out an un-worked muscle, so it's not too bad. And I stretch often.
The unexpected effect: nausea.
Following the first treatment, I felt yucky throughout the day and it built up until, by 6PM, I was very close to throwing up. Dr. X-Ray hadn't given me a number to call after hours, so I called Dr. Science, who, again, was completely generous with his time as I started out with, "So sorry to disturb you. . ."
I was to take the same medications I took to control the nausea from chemo. I did, and they worked.
Tuesday I felt fine. Wed through Fri, I took the meds again.
I find it all pretty disappointing, as I was really liking not being on any medications. But. Well. We'll see. . . I will try on Monday to go without, and see just how bad it actually gets.
I mentioned all this to Dr. X-Ray on Wednesday, of course. And asked, "Are you sure they are pointing that thing at the right place?"
He said, "I hope so." And then explained that the beam follows the light, and that the techs see the light on the closed-circuit TV. So they'd know if it was pointed at my stomach.
Turns out some people are just very sensitive to radiation, and I'm one of them. Not too surprising, because I get nauseous very easily. I can't even watch my kids jump on a trampoline without needing to toss the ole cookies.
4. Speaking of Dr. X-Ray. . . After having to call Dr. Science on Monday night, I went in to the Radiation dept on Tuesday in search of their after-hours-call number. I asked the RN who works in a booth right inside the department's door. I explained what had happened. In the future, what number should I call?
She asked, "When did you need to call?"
I said, "6 PM."
"Oh," said the nurse-in-a-booth, "That's after hours."
"Yeah," I said.
"Dr. X-Ray doesn't give out his number for outside office hours."
"Well," I said, "Shame on him."
She looked back at me with big eyes. This was an exciting development in her day.
I went on, "My surgeon gave me his number when I was in his care. My oncologist gave me his number. Seems to me that my radiologist should give me his. I'm in his care, am I not?"
Her eyes were still big. "People just call their oncologist if they have a problem."
Well. Fine. These guys are part of the same practice, and if that's their deal, fine. But mark my words: I'm going to mention this to Dr. Science.
You're thinking, "Mention it to Dr. X-Ray, too! I dare you!"
And I was going to. But then he walked in on Wednesday and we got down to the important business of the day--e.g. pictures of Amy! decapitated--and. . . I just like him a lot. He's very down to earth. Easy going. I didn't have the heart to read him a riot act about accessibility. It's not like it's a problem to call Dr. Science, after all.
Maybe I bring up the subject before the 7 weeks are up. As I tell you all about it, I realize that I'm pretty curious to know what he'd say. I've got just 6 weeks to find out. . .
Saturday, December 12, 2009
Thursday, December 10, 2009
Radiation
4 treatments down. 31 to go.
This is why I haven't been in a big hurry to describe the process of radiation. What? Am I going to forget what treatment #1 is like? No problem. It was the same as treatment #18 or #23 or #31 will be.
But first, there were "work ups." Two different appointments in which a bunch of medical folks did a bunch of stuff that would be used to treat me in the right place at the right strength. At the time, I didn't know too much beyond the term "stuff," either. Bryan asked me, after the first appointment, "What did they do, exactly?" and I said, "Come to think of it. . .I don't know."
This is because these medical folks whisked me to and fro. Go in there and change. Come out here for me to take your photo to put on your file. Go in there for the "simulation" (simulation?). Lie down on that table. . .
And then this part happened slowly for me: the gown came off in a freezing cold room and I was shaking all over from the cold, which is not permitted for whatever "simulation" they'd be doing.
So the nurse--at least she claimed to be a nurse, but you be the judge from the following anecdote--put a warmed blanket on me and they waited for me to stop shaking.
During this wait, she commented, "You're a young person."
"Yep." And in the silence, I got to thinking of the advantage to this in the cancer center. The techs are always able to pick me out of the crowd waiting in the lobby or the barn as they know from my file that I'm 34 years old and they can see with their own eyes that there's only one woman sitting there who's under age 50.
"Hmm," the "nurse" went on. This "nurse," who was the very one to take my gown off. . .
"What kind of cancer do you have?"
I thought: Please tell me that you're only responsible for making coffee. And I looked at her with great panic.
Then the "simulation" guy came back in and got down to business. In retrospect, it's possible--I hope!--that this "nurse" meant, "Which kind of breast cancer do you have?" In which case, I might have said, "What difference does it make?"
The blanket came down and I was told to hold onto two handle bars above my head. Half-naked. Thoroughly cold. Gripping bars. Various people in the room who's function--and intelligence--is questionable to me. Just another humiliating moment in a year so far quite full of them.
And these medical folks, for as nice and professional and kind as they were, tottered about their business as they do all day, all week, all year long. When you're running a simulation, it turns out, you're really just mapping out whatever body happens to be lying on the slab.
After the scan, the "nurse" put big marks on my belly and each side of my ribs. Then, within these marks, she tattooed me. 3 little marks, each the size of a big freckle, but with black ink, so they don't look like freckles. They look like big ink dots.
The first one, on my belly, hardly hurt. That's because the nerve connecting that skin to my brain was severed during my surgery. Same with the dot on my right.
Then she did the dot on my left and I yelped from the pain--like a dog whose tail gets stepped on. It was exactly that noise. One dot! Owie owie owie!!!
Who submits to a series of these painful dots in order to get a full-blown tattoo? It really, really hurts!
The second work-up appointment happened on the table that's actually used to administer the radiation. Two techs worked together to take various x-rays of me. The machine hovered and swung around me much as the one in the dentist's office does, only this was was huge and the techs left the room and operated it by remote.
The part of the machine that actually fires the radiation, in various forms, does so through a glass plate. In it, I could see my reflection when it was stationed right above me. Huh. I'd never seen myself from that angle before, let alone while being naked. Then the light show began.
Green laser lights shone from various directions, demarcating the section of my body that would be treated. I could see them shining on me, gerrymandering my chest arm and neck into tidy portions. I felt like I was in the beginning of a production of the 6 Billion Dollar Woman whence high-tech gadgetry would perfect the bionic creature on the table.
The tech later used a marker to draw along these very lines so they could take a digital photo for the file. She said, "It's OK to wash all this off."
"OK," yes. But not possible, it seems. 7 days and 7 showers later, the marker is still there.
But the following was the most surprising part of the day: That machine moved out of my line of site and then I was staring up at the ceiling in the darkened room as the x-rays continued. And lo! There was a gadget above the ceiling, some kind of important equipment--perhaps even a source of one of the laser beams--shining down through a neat "X" that had been carved out of the ceiling panel.
But don't picture a panel that was specifically made for this radiation room. No. It was a regular floating ceiling, the kind that movie characters fall through when they're trying to escape by climbing out through the ventilation screens, and it looked like the "X" had been cut by a janitor armed with a saws-awl.
I mean, fine. If that's what gets the job done, OK. The equipment working all right? Good.
But in a country where the FDA requires surgeons to use a $100 crochet hook for a varicose vein procedure instead of a $1.50 crochet hook from Wal-Mart, I was kind of surprised that the radiation room wasn't simply built with a higher ceiling.
It's not like the lower ceiling was helping to keep the room heated.
(BTW--the crochet hook thing is something Mayfield told me about. But I don't remember if I mentioned it here already.)
And then, Monday, radiation began. This is the routine, to be repeated 5 days a week for 7 weeks:
I arrive, go straight back to the radiation department instead of checking in with the Center's secretaries, pull out a key card from a small, plastic organizer, and then zap it under one of those. . . zapper things.
Then I get changed into a gown.
Within minutes, the techs, alerted to my presence from my key card zap, take me back to the radiation room. I lie on the table. Gown comes down. Arms up to the handle bars. Head turned to the left. They put a rubber band on my feet to keep my legs from shifting during treatment. (This, I recommend, is very comfortable if you sleep on your back.) I lie on a sheet on the table so they can use the sheet to slide me a bit this way or that in order to make my 3 tattoos line up the same place each time.
Then they leave the room and the lights go down and the machines start whirring and hovering and moving about. Every now and then a signal beeps loudly and this means the waves are sent forth.
They say you can't feel it.
I think I feel it. That first day, especially. It felt like a deep, deep quivering in my muscle. I think, anyway. Because of the beep, I know when it's happening, so there's no telling what I've imagined.
After about 3 minutes, it's over with. I get dressed. That first day, they put my initials on a piece of tape and stuck it to a cubby hole in the changing room. I'm to stow my gown there instead of using a new one each day. And this was, up to that moment in my radiation experience, probably the most depressing condition for me to think about.
Who wants to have her own cubby in a radiation unit?
But it got worse.
On Wednesdays, patients see Dr. X-Ray after treatment to discuss any concerns or side effects. This was my first time seeing him following the "simulation," and at long last, he showed me what that procedure was all about and what my treatment would be.
He brought up a series of images produced by that CAT scan. These images were murky to me--various forms in various shades of gray or black, and though he explained which angles they reflect, I was never very good at those spacial reasoning questions that ask you to assemble shapes in your head. That is, I had no idea, really, what he was showing me. Kind of like when I saw the ultra-sounds of my babies in the early months. "That's a heart? OK. I believe you" and instead of worrying about it, I got lost in the wonder of it.
This time, it was more like, "Those are lungs? We're sure we aren't frying them, right?"
Then Dr. X-Ray said, "Oh, here we go--" and brought up a final image for me.
Following all the nakedness in cold rooms, and handle bars to grip, and lying on a slab and seeing myself sliced up by green beams and then drawn on with marker that doesn't wash off and having my own personal space reserved in the radiation dressing room, I looked at this image:
It was of my body with peach-tone skin computer-painted on. One breast. One scar. The body ended right above my lips and, on the bottom of the picture, right above my belly button and there, where the body was cut off, I could see my organs and a little white core of my spine.
So.
Now I know what I look like decapitated. As sometimes happens to meat on a slab.
All of which could be taken to be a little sad. A real bummer, right? But I am sure to look at one other section in the radiation room each time I go in, which is once a day, 5 days a week for 7 weeks. This is the shelf that holds a dozen white mesh head masks, each one labeled for the patient it's been molded to.
And I'm reminded that the kind of cancer I have is, in fact, just breast cancer and that it has not, it seems, spread elsewhere.
This is why I haven't been in a big hurry to describe the process of radiation. What? Am I going to forget what treatment #1 is like? No problem. It was the same as treatment #18 or #23 or #31 will be.
But first, there were "work ups." Two different appointments in which a bunch of medical folks did a bunch of stuff that would be used to treat me in the right place at the right strength. At the time, I didn't know too much beyond the term "stuff," either. Bryan asked me, after the first appointment, "What did they do, exactly?" and I said, "Come to think of it. . .I don't know."
This is because these medical folks whisked me to and fro. Go in there and change. Come out here for me to take your photo to put on your file. Go in there for the "simulation" (simulation?). Lie down on that table. . .
And then this part happened slowly for me: the gown came off in a freezing cold room and I was shaking all over from the cold, which is not permitted for whatever "simulation" they'd be doing.
So the nurse--at least she claimed to be a nurse, but you be the judge from the following anecdote--put a warmed blanket on me and they waited for me to stop shaking.
During this wait, she commented, "You're a young person."
"Yep." And in the silence, I got to thinking of the advantage to this in the cancer center. The techs are always able to pick me out of the crowd waiting in the lobby or the barn as they know from my file that I'm 34 years old and they can see with their own eyes that there's only one woman sitting there who's under age 50.
"Hmm," the "nurse" went on. This "nurse," who was the very one to take my gown off. . .
"What kind of cancer do you have?"
I thought: Please tell me that you're only responsible for making coffee. And I looked at her with great panic.
Then the "simulation" guy came back in and got down to business. In retrospect, it's possible--I hope!--that this "nurse" meant, "Which kind of breast cancer do you have?" In which case, I might have said, "What difference does it make?"
The blanket came down and I was told to hold onto two handle bars above my head. Half-naked. Thoroughly cold. Gripping bars. Various people in the room who's function--and intelligence--is questionable to me. Just another humiliating moment in a year so far quite full of them.
And these medical folks, for as nice and professional and kind as they were, tottered about their business as they do all day, all week, all year long. When you're running a simulation, it turns out, you're really just mapping out whatever body happens to be lying on the slab.
After the scan, the "nurse" put big marks on my belly and each side of my ribs. Then, within these marks, she tattooed me. 3 little marks, each the size of a big freckle, but with black ink, so they don't look like freckles. They look like big ink dots.
The first one, on my belly, hardly hurt. That's because the nerve connecting that skin to my brain was severed during my surgery. Same with the dot on my right.
Then she did the dot on my left and I yelped from the pain--like a dog whose tail gets stepped on. It was exactly that noise. One dot! Owie owie owie!!!
Who submits to a series of these painful dots in order to get a full-blown tattoo? It really, really hurts!
The second work-up appointment happened on the table that's actually used to administer the radiation. Two techs worked together to take various x-rays of me. The machine hovered and swung around me much as the one in the dentist's office does, only this was was huge and the techs left the room and operated it by remote.
The part of the machine that actually fires the radiation, in various forms, does so through a glass plate. In it, I could see my reflection when it was stationed right above me. Huh. I'd never seen myself from that angle before, let alone while being naked. Then the light show began.
Green laser lights shone from various directions, demarcating the section of my body that would be treated. I could see them shining on me, gerrymandering my chest arm and neck into tidy portions. I felt like I was in the beginning of a production of the 6 Billion Dollar Woman whence high-tech gadgetry would perfect the bionic creature on the table.
The tech later used a marker to draw along these very lines so they could take a digital photo for the file. She said, "It's OK to wash all this off."
"OK," yes. But not possible, it seems. 7 days and 7 showers later, the marker is still there.
But the following was the most surprising part of the day: That machine moved out of my line of site and then I was staring up at the ceiling in the darkened room as the x-rays continued. And lo! There was a gadget above the ceiling, some kind of important equipment--perhaps even a source of one of the laser beams--shining down through a neat "X" that had been carved out of the ceiling panel.
But don't picture a panel that was specifically made for this radiation room. No. It was a regular floating ceiling, the kind that movie characters fall through when they're trying to escape by climbing out through the ventilation screens, and it looked like the "X" had been cut by a janitor armed with a saws-awl.
I mean, fine. If that's what gets the job done, OK. The equipment working all right? Good.
But in a country where the FDA requires surgeons to use a $100 crochet hook for a varicose vein procedure instead of a $1.50 crochet hook from Wal-Mart, I was kind of surprised that the radiation room wasn't simply built with a higher ceiling.
It's not like the lower ceiling was helping to keep the room heated.
(BTW--the crochet hook thing is something Mayfield told me about. But I don't remember if I mentioned it here already.)
And then, Monday, radiation began. This is the routine, to be repeated 5 days a week for 7 weeks:
I arrive, go straight back to the radiation department instead of checking in with the Center's secretaries, pull out a key card from a small, plastic organizer, and then zap it under one of those. . . zapper things.
Then I get changed into a gown.
Within minutes, the techs, alerted to my presence from my key card zap, take me back to the radiation room. I lie on the table. Gown comes down. Arms up to the handle bars. Head turned to the left. They put a rubber band on my feet to keep my legs from shifting during treatment. (This, I recommend, is very comfortable if you sleep on your back.) I lie on a sheet on the table so they can use the sheet to slide me a bit this way or that in order to make my 3 tattoos line up the same place each time.
Then they leave the room and the lights go down and the machines start whirring and hovering and moving about. Every now and then a signal beeps loudly and this means the waves are sent forth.
They say you can't feel it.
I think I feel it. That first day, especially. It felt like a deep, deep quivering in my muscle. I think, anyway. Because of the beep, I know when it's happening, so there's no telling what I've imagined.
After about 3 minutes, it's over with. I get dressed. That first day, they put my initials on a piece of tape and stuck it to a cubby hole in the changing room. I'm to stow my gown there instead of using a new one each day. And this was, up to that moment in my radiation experience, probably the most depressing condition for me to think about.
Who wants to have her own cubby in a radiation unit?
But it got worse.
On Wednesdays, patients see Dr. X-Ray after treatment to discuss any concerns or side effects. This was my first time seeing him following the "simulation," and at long last, he showed me what that procedure was all about and what my treatment would be.
He brought up a series of images produced by that CAT scan. These images were murky to me--various forms in various shades of gray or black, and though he explained which angles they reflect, I was never very good at those spacial reasoning questions that ask you to assemble shapes in your head. That is, I had no idea, really, what he was showing me. Kind of like when I saw the ultra-sounds of my babies in the early months. "That's a heart? OK. I believe you" and instead of worrying about it, I got lost in the wonder of it.
This time, it was more like, "Those are lungs? We're sure we aren't frying them, right?"
Then Dr. X-Ray said, "Oh, here we go--" and brought up a final image for me.
Following all the nakedness in cold rooms, and handle bars to grip, and lying on a slab and seeing myself sliced up by green beams and then drawn on with marker that doesn't wash off and having my own personal space reserved in the radiation dressing room, I looked at this image:
It was of my body with peach-tone skin computer-painted on. One breast. One scar. The body ended right above my lips and, on the bottom of the picture, right above my belly button and there, where the body was cut off, I could see my organs and a little white core of my spine.
So.
Now I know what I look like decapitated. As sometimes happens to meat on a slab.
All of which could be taken to be a little sad. A real bummer, right? But I am sure to look at one other section in the radiation room each time I go in, which is once a day, 5 days a week for 7 weeks. This is the shelf that holds a dozen white mesh head masks, each one labeled for the patient it's been molded to.
And I'm reminded that the kind of cancer I have is, in fact, just breast cancer and that it has not, it seems, spread elsewhere.
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