These last 5 treatments of radiation have been different. I mentioned this already--about the electrons and it being focused on the scar line.
I didn't tell you yet about my appointment 2 weeks ago, when they needed to prepare for this last 5 day extravaganza. Dr. Tanner came in to the treatment room, and using the $12 surgical marker with my name on it, traced an oval around the scar. A general outline about 2 inches around it on all sides. He didn't use any special instrument for this--just his eye and his hand and a $12 marker.
They took a photo of it.
They made a tracing of his marker line.
And a week later, I went into the treatment room to find an extension hooked onto the radiation machine. It was basically a frame of a cube. Inserted into the bottom plane of that cube was a square slab of lead with a hole cut out of it that fit the exact shape of Dr. Tanner's drawing. This was to shield the rest of me and let the radiation hit only that concentrated area.
Yeah, yeah, I got that. But it amazed me that they'd pour a mold based on the marker outline that my 6 year old could have drawn. "Amazed," because it had to be Dr. Tanner who drew it. The techs couldn't do it, nooooo, it had to be the bigshot radiologist.
Every time, for those last 5 treatments, this cracked me up. I asked what they did with the slab after I was done. If they were going to throw it out, I'd have asked to keep it. Now that would have been a conversation piece.
But they melt it down for use with the next patient.
Speaking of other patients, I did indeed outlast all the others who had dates before mine. And I outlasted all the others added right up to January 11.
I brought the kids with me all of last week. I told them On Friday that this was their last treatment--Mommy still had one more, but they would be with Betsy that day--so they needed to celebrate the last one with me on Friday.
After I got dressed (out of my gown, of which Joshua said each day, "That dress looks cute,") I brought them into the hallway outside the treatment room where a ship's bell hangs. Next to it is a brass plaque with a poem engraved,
I ring this bell
Three times to say
I've finished my course well
And I am on my way
I lifted Gemma up, and then Joshua, and let them ring the bell. They did it with great joy, free of concern, oblivious to the meaning of it. And they rang it loudly and a lot, a lot more than 3 times, because it is fun to ring a bell.
I cried and cried. Mostly because I can look at them and see that they don't get it. And I'm glad about that. Thankful. They have no idea what this year has been for me and Bryan. What they know and care about right now is that Mommy won't have a rigorous treatment schedule anymore, and the appointments she will have won't make her tired.
Today, it was supposed to be just Bryan and I, but then Betsy's son got sick, sick, sick with the flu, and those are germs the Ponce family doesn't need right now. So the kids came again.
They didn't ring the bell this time, and neither did I, because a patient went in for treatment right after me and I didn't want to risk disturbing her. My version of the bell, I think, was tossing my gown into the hamper, and leaving behind my very own cubby hole at the radiation unit.
I cried and cried again. I'm crying now as I tell you all about it.
We went to dinner together at Fargoe's, a very fun pizza place, and it was our first time, so it felt extra festive. At the table, we played 20 questions, a game Gemma loves, and Josh, too, though he has his own little version of it. . .
They have a little game room, too, where Bryan tried his hand at PacMan. Just seeing that was worth the trip. The picture I'm making is that we had a fun evening as a family. It was a simple delight just to be together. A delight to see my children enjoy themselves.
A delight I hope to enjoy for a long time coming.
Will you bear with me for a story
The radiation techs gave me a certificate before I left. Congratulations on finishing your treatment, that kind of thing. And then: "We Salute Your Courage!"
This stuck with me as we drove to the restaraunt, and again as we drove home. I realized something I hadn't been able to piece together before. What were all these tears about? At the end of chemo? And now?
It's not relief. Maybe it is a little. But I can tell you that mostly, I'm not feeling relief.
But that certificate. . . Yes. This was it. There's the thought out there that doing chemo and doing radiation took courage. It didn't. I mean, what was my option? You do what you got to do, right? There's nothing brave it that. Maybe if the option was a fast, painless death, then choosing a bummer treatment to live instead would have been a little courageous. But dying from an untreated cancer? In my mid-30's? That would have been a ton worse than anything I lived with the past few months.
No. I realized that the courage starts now. At least, I need it to. How to go forward without the cancer? After these several months and the tidal wave of love that has poured through our lives, I'm a changed person. There's no going back to my old life. But what does my life look like now? How do I go on without this giant circumstance?
I think all the crying has more to do with the grief over the end of that circumstance, over a changed life.
Don't get me wrong: Life will go on. And it will be far superior to what it would have been if we had not run this race. (Well, it's not quite over, is it?) But going on, and being willing to go into a new life, as a new person, is what takes courage.
At least, this is what I realized and felt in that deep place as we approached our home. I prayed right then, that God would give me all the guidance and courage I would need.
Then Bryan picked up the mail from our box. In it was a package from my friend, Sarah.
Showing posts with label Radiation. Show all posts
Showing posts with label Radiation. Show all posts
Monday, January 25, 2010
Friday, January 15, 2010
Wellness Update
I'm wearing a pressure sleeve and a pressure glove, so typing is not all that easy.
Or, I could say that typing is easy, and making typo's, even moreso. All this makes me given to brevity.
My follow-up with the lymphedema therapist is on Monday, whence we'll see whether I'm responding to the pressure-sleeve-therapy. I also "manually drain" my lymphatic system. Who even knows anything about the lymphatic system let alone that one could "manually drain" it?
I have 7 radiations left to go, and my skin, this week, has finally screamed in protest. I'm glad I don't have a nerve connected to that chest wall, because it's now covered in a 2nd degree--bordering on 3rd degree--burn.
After the 3:30 treatment, it's pretty uncomfortable (from the bit that I can feel). But by morning, it's converted to mostly a tan. In all, I'm pretty thankful the skin has been responding so well. I'm thankful, too, for the lydocaine-aloe gel that I can apply liberally.
On the other hand, the rest of my body is pretty aware that a chunk of it is having the cancer burned out of it. And it's working really hard to restore the damage. I'm so exhausted. All the time. I'm sleeping about 10 hours a day, and still feel like I could take a nap at any given moment.
Ah, well. Only 7 more treatments.
Or, I could say that typing is easy, and making typo's, even moreso. All this makes me given to brevity.
My follow-up with the lymphedema therapist is on Monday, whence we'll see whether I'm responding to the pressure-sleeve-therapy. I also "manually drain" my lymphatic system. Who even knows anything about the lymphatic system let alone that one could "manually drain" it?
I have 7 radiations left to go, and my skin, this week, has finally screamed in protest. I'm glad I don't have a nerve connected to that chest wall, because it's now covered in a 2nd degree--bordering on 3rd degree--burn.
After the 3:30 treatment, it's pretty uncomfortable (from the bit that I can feel). But by morning, it's converted to mostly a tan. In all, I'm pretty thankful the skin has been responding so well. I'm thankful, too, for the lydocaine-aloe gel that I can apply liberally.
On the other hand, the rest of my body is pretty aware that a chunk of it is having the cancer burned out of it. And it's working really hard to restore the damage. I'm so exhausted. All the time. I'm sleeping about 10 hours a day, and still feel like I could take a nap at any given moment.
Ah, well. Only 7 more treatments.
Thursday, January 7, 2010
Radiation Update
12 treatments to go. Notes from thus far:
My cubicle in the radiation wing is marked "AP 12/7." It holds my gown.
There are a few other cubicles that are marked as well. 4 others, now. 1 that is marked 12/3 and 3 that have dates starting after my own. There used to be 6, but I've outlasted 2 so far.
"Outlasted," because it's become a little game I'm playing. Each day I discovered another gown gone, I had one of those "Yess!" arm pumping victory moments.
Am I crazy? Because, you know, what a victory that I have to do 7 weeks of radiation.
Yet you all want me to keep you posted, don't you? How many of these 4 can I outlast?
Every 5th day, the techs take x-rays as well as dispense treatment. There is a glass plate they slide in that is marked with a "Y" and "Z" axis, a cross right in the middle of the field.
The "Y" is the horizontal axis, and the positive is on the left while the negative is marked on the right. But. OK. From the camera's point of view, the negative is on the left and the positive is on the right.
On the "Z" axis--the vertical--the positive is marked on the bottom and the negative is marked on the top.
What?
There can't be a good reason for this. Yet there must be. I asked the tech and she didn't know. Every fifth day, it drives me a little more crazy.
Speaking of techs, how does this story make you feel:
The procedure for treatment begins with the set up. I lie down, assume the position of hands above head, and the techs slide me around on the table a bit here and there until the lasers are lined up with my tattoos.
Then one goes to a computer monitor and calls out 2 numbers, one for moving me to the side, and one for moving me down.
I kept forgetting to listen to the numbers and memorize them for the next day, but after several treatments, I was pretty sure they were different numbers each day.
But why would this be? If I'm lined up with my tattoos, and the lasers are at fixed points and my tattoos are fixed points, then shouldn't I be moved--while already on the table--in relation to the machine the same distance each and every time?
I asked the tech.
She said, yes, they were different numbers that get called out, and it was to make sure I was in the same spot each time.
I asked her how this could be possible. Just as I explained it to all of you. She said, "In a perfect world, yes, but we have to be absolutely precise."
What?
"It's all complicated science."
What??
I'm not concerned that the beam isn't hitting the right spot. I have complete confidence that I'm being radiated accurately each and every time.
But this doesn't make sense. Lasers, tattoos, precision machine. . . I should be moved the same distance and direction each time.
I had to let it go. The whole matter. I had to stop thinking about it.
Then, this week, I made the effort to listen to and memorize my numbers. And you know what? They are the same every time.
Now. This tech. Very nice woman. But how would you feel if it were you on the table and she with her finger on the button?
Speaking of feelings, I can finally tell you a very disturbing story from two weeks ago. I have to. Leaving it out would be to permit an incomplete record.
Dr. Tanner was on vacation. I knew there was to be a substitute there that Wednesday, the day that patients meet with a doctor.
So I was quick on the uptake when, Wednesday morning, I lay on the slab, in the position, when this guy walks into the treatment room.
And he made some kind of joke. Something not memorable. He looked at me, at my face. Didn't say a word.
So I said, "Who are you?????" And I probably sounded pretty disturbed.
He said, "Just some guy off the street."
And then the tech made some joke about how, sure, they let just anyone walk in.
So I said, "You should not be making light of this. And I still don't know who you are."
Folks, I was "in the position" already. Naked. Lying there. Looking at a man who hadn't bothered to tell me that he was Doctor so-and-so. I just closed my eyes. Closed them before they went blind with white rage and I started saying things unbecoming.
Then he said, "Oh dear, I've embarrassed the poor woman."
This part looks bad in print. But he said it with genuine regret. And then started saying other stuff--you know how when you really step in it, and you just keep talking, and every additional thing you say only makes matters worse? That was this guy.
The problem was not embarrassment. In his little post-stepping-in-it rant, he mentioned how medical professionals don't get embarrassed about anything--e.g. naked bodies are no big deal to him. The problem was his profound disrespect for my dignity.
What a jackass. That's pretty much the nicest term I can come up with.
And my opinion didn't really change during or following my appointment with him after the treatment. He apologized again in that room, where I was dressed. And told me to 'Drive safely, Girl' -- but he was an old jackass, so I didn't take the remark to be condescension so much as it was just more jackassery.
I got home that morning and cried and cried about it as I told Bryan.
There were those few minutes during treatment, when I was alone, on the slab, following the incident yet preceding the appointment I knew I had to have with this jackass. What would I say? He was guilty of unprofessionalism, yes, of a poor bedside manner, yes. But he hadn't meant to be hurtful.
Yet, I knew there was a huge possibility I would just rip into him. It was about to be a moment very unbecoming of Christ, I knew, I could see. So I prayed right then.
And the Holy Spirit answered: Jesus knows what it feels like to have one's dignity assaulted--and He at the hands of people who really did mean to be hurtful. And it was a small price to pay compared to the salvation it bought for those He loves. You can forgive this guy, Amy. For the glory of Jesus, you can count this a small price.
My cubicle in the radiation wing is marked "AP 12/7." It holds my gown.
There are a few other cubicles that are marked as well. 4 others, now. 1 that is marked 12/3 and 3 that have dates starting after my own. There used to be 6, but I've outlasted 2 so far.
"Outlasted," because it's become a little game I'm playing. Each day I discovered another gown gone, I had one of those "Yess!" arm pumping victory moments.
Am I crazy? Because, you know, what a victory that I have to do 7 weeks of radiation.
Yet you all want me to keep you posted, don't you? How many of these 4 can I outlast?
Every 5th day, the techs take x-rays as well as dispense treatment. There is a glass plate they slide in that is marked with a "Y" and "Z" axis, a cross right in the middle of the field.
The "Y" is the horizontal axis, and the positive is on the left while the negative is marked on the right. But. OK. From the camera's point of view, the negative is on the left and the positive is on the right.
On the "Z" axis--the vertical--the positive is marked on the bottom and the negative is marked on the top.
What?
There can't be a good reason for this. Yet there must be. I asked the tech and she didn't know. Every fifth day, it drives me a little more crazy.
Speaking of techs, how does this story make you feel:
The procedure for treatment begins with the set up. I lie down, assume the position of hands above head, and the techs slide me around on the table a bit here and there until the lasers are lined up with my tattoos.
Then one goes to a computer monitor and calls out 2 numbers, one for moving me to the side, and one for moving me down.
I kept forgetting to listen to the numbers and memorize them for the next day, but after several treatments, I was pretty sure they were different numbers each day.
But why would this be? If I'm lined up with my tattoos, and the lasers are at fixed points and my tattoos are fixed points, then shouldn't I be moved--while already on the table--in relation to the machine the same distance each and every time?
I asked the tech.
She said, yes, they were different numbers that get called out, and it was to make sure I was in the same spot each time.
I asked her how this could be possible. Just as I explained it to all of you. She said, "In a perfect world, yes, but we have to be absolutely precise."
What?
"It's all complicated science."
What??
I'm not concerned that the beam isn't hitting the right spot. I have complete confidence that I'm being radiated accurately each and every time.
But this doesn't make sense. Lasers, tattoos, precision machine. . . I should be moved the same distance and direction each time.
I had to let it go. The whole matter. I had to stop thinking about it.
Then, this week, I made the effort to listen to and memorize my numbers. And you know what? They are the same every time.
Now. This tech. Very nice woman. But how would you feel if it were you on the table and she with her finger on the button?
Speaking of feelings, I can finally tell you a very disturbing story from two weeks ago. I have to. Leaving it out would be to permit an incomplete record.
Dr. Tanner was on vacation. I knew there was to be a substitute there that Wednesday, the day that patients meet with a doctor.
So I was quick on the uptake when, Wednesday morning, I lay on the slab, in the position, when this guy walks into the treatment room.
And he made some kind of joke. Something not memorable. He looked at me, at my face. Didn't say a word.
So I said, "Who are you?????" And I probably sounded pretty disturbed.
He said, "Just some guy off the street."
And then the tech made some joke about how, sure, they let just anyone walk in.
So I said, "You should not be making light of this. And I still don't know who you are."
Folks, I was "in the position" already. Naked. Lying there. Looking at a man who hadn't bothered to tell me that he was Doctor so-and-so. I just closed my eyes. Closed them before they went blind with white rage and I started saying things unbecoming.
Then he said, "Oh dear, I've embarrassed the poor woman."
This part looks bad in print. But he said it with genuine regret. And then started saying other stuff--you know how when you really step in it, and you just keep talking, and every additional thing you say only makes matters worse? That was this guy.
The problem was not embarrassment. In his little post-stepping-in-it rant, he mentioned how medical professionals don't get embarrassed about anything--e.g. naked bodies are no big deal to him. The problem was his profound disrespect for my dignity.
What a jackass. That's pretty much the nicest term I can come up with.
And my opinion didn't really change during or following my appointment with him after the treatment. He apologized again in that room, where I was dressed. And told me to 'Drive safely, Girl' -- but he was an old jackass, so I didn't take the remark to be condescension so much as it was just more jackassery.
I got home that morning and cried and cried about it as I told Bryan.
There were those few minutes during treatment, when I was alone, on the slab, following the incident yet preceding the appointment I knew I had to have with this jackass. What would I say? He was guilty of unprofessionalism, yes, of a poor bedside manner, yes. But he hadn't meant to be hurtful.
Yet, I knew there was a huge possibility I would just rip into him. It was about to be a moment very unbecoming of Christ, I knew, I could see. So I prayed right then.
And the Holy Spirit answered: Jesus knows what it feels like to have one's dignity assaulted--and He at the hands of people who really did mean to be hurtful. And it was a small price to pay compared to the salvation it bought for those He loves. You can forgive this guy, Amy. For the glory of Jesus, you can count this a small price.
Tuesday, December 22, 2009
Radiation Update
BTW,
Three pieces of good news to report:
1. While I still get a touch nauseous from treatments, it's milder than before and I don't need to medicate for it.
2. The standard reaction is for the skin to burn red first, then turn into a tan. I had some itchiness, but mostly, the skin is going straight to a tan. A little weird, I admit, to be tanned by radiation, but I'm thankful I'm not suffering a skin burn right now.
3. So far, no lymphedema has been triggered in my arm, which happens about a quarter of the time during radiation. Please keep praying that side effect would be warded off now and forever! (I met a woman in the chemo barn whose lymphedema was triggered 12 years into remission. . .)
Three pieces of good news to report:
1. While I still get a touch nauseous from treatments, it's milder than before and I don't need to medicate for it.
2. The standard reaction is for the skin to burn red first, then turn into a tan. I had some itchiness, but mostly, the skin is going straight to a tan. A little weird, I admit, to be tanned by radiation, but I'm thankful I'm not suffering a skin burn right now.
3. So far, no lymphedema has been triggered in my arm, which happens about a quarter of the time during radiation. Please keep praying that side effect would be warded off now and forever! (I met a woman in the chemo barn whose lymphedema was triggered 12 years into remission. . .)
Saturday, December 19, 2009
Another Big Reveal
I've been calling him Dr. X-Ray.
This is because I wasn't sure if I'd end up liking him, given that accessibility blip from the first week. And I didn't want to disparage someone's real name. "____ Who Shall Remain Nameless" has already been used here.
But I know for sure that I like him now. We had our Wednesday appointment, and in doctor-patient terms, the only thing we talked about is that I don't yet have a skin reaction. (Thank You, God.) A reaction in the second week is usually bad news for the remainder of treatment, because the skin just gets worse. What's typical is that late 3rd or early 4th week, a slight burn shows up, and that this turns to a tan.
As we had nothing medical beyond this to discuss, we just chatted for about 15 minutes. I got the impression he wouldn't have minded staying there for another hour.
What did we talk about? My probing questions for him:
"Why did you become a radiology in oncology? Isn't this kind of sad work to be drawn to?"
Answer:
He likes the technology of it. He'd been an engineer for IBM before med school, and decided he didn't want to do that for the rest of his life and "Be such a nerd," pause, bashful dip of the head, "Of course, I'm still kind of a nerd."
And this isn't really the same kind of oncology as doctors like Markus sign up for. Dr. X-Ray's "really just a consultant for those guys"--gestured to other half of the cancer center--"I see patients for a short time, usually after they're already well into treatment. They're done with me before they go back to the other side and then really decline--" he looked up, as though remembering his bedside manner, and said, "Of course, you'll be fine."
Then he told the story of when he worked in Hinsdale, and he referred a 12 year old girl (who lived nearby) with a brain tumor down to Children's in Chicago. They saw her and then sent her back to Dr. X-Ray. He told them he didn't want to treat her, he wasn't a pediatric radiologist, she should be with specialists.
They told him she wasn't going to make it, but she might be able to get 6 more months, and it would be a shame if she had to spend them commuting 80 miles round trip every day for radiation. So he treated her. She made it for 3 more months. And he said then that he never wanted another case like this.
"But she did make it to Disneyworld, or Hawaii or somewhere. . .one of those Make a Wish trips." He went on to say that he now tells terminal patients who are thinking of taking a trip somewhere to "Go now, not later."
So. He's tasted this sadness before and wants no more of it. I don't blame him one bit. But it makes the Drs. like Markus shine as that much more heroic, doesn't it?
I asked Dr. X-Ray if he believes, as posters all over the cancer center and billboards all over Colorado proclaim, that "Love Heals." (That is, this is the Rocky Mountain Cancer Center's ad campaign that is quite ubiquitous: Love Heals.)
He shrugged and said, "Sure. There are studies that show terminal people will die just after a big even like a graduation or wedding and not right before." It says something when a person responds to a "what do you believe?" question with a citation of a scientific study.
Finally, I asked him a probing question when he first entered the room. The first question, reported here last of all:
"So, Dr. Tanner," because that is his name, "Do patients often comment on the appropriateness of your name?"
He laughed as though this was the first time he's heard the suggestion. No, they don't. But he's heard of other doctors with either ironic or oddly appropriate names. Right in that moment, he couldn't think of one.
And neither could I.
Isn't that annoying? When you know you've heard examples of a thing, but cannot recall them for the right moment?
I'd like to go back to him in 2 weeks (because Dr. Tanner will be working on his own tan on vacation next week) with a bunch of examples for him.
And I'm sure you know of some. . .
This is because I wasn't sure if I'd end up liking him, given that accessibility blip from the first week. And I didn't want to disparage someone's real name. "____ Who Shall Remain Nameless" has already been used here.
But I know for sure that I like him now. We had our Wednesday appointment, and in doctor-patient terms, the only thing we talked about is that I don't yet have a skin reaction. (Thank You, God.) A reaction in the second week is usually bad news for the remainder of treatment, because the skin just gets worse. What's typical is that late 3rd or early 4th week, a slight burn shows up, and that this turns to a tan.
As we had nothing medical beyond this to discuss, we just chatted for about 15 minutes. I got the impression he wouldn't have minded staying there for another hour.
What did we talk about? My probing questions for him:
"Why did you become a radiology in oncology? Isn't this kind of sad work to be drawn to?"
Answer:
He likes the technology of it. He'd been an engineer for IBM before med school, and decided he didn't want to do that for the rest of his life and "Be such a nerd," pause, bashful dip of the head, "Of course, I'm still kind of a nerd."
And this isn't really the same kind of oncology as doctors like Markus sign up for. Dr. X-Ray's "really just a consultant for those guys"--gestured to other half of the cancer center--"I see patients for a short time, usually after they're already well into treatment. They're done with me before they go back to the other side and then really decline--" he looked up, as though remembering his bedside manner, and said, "Of course, you'll be fine."
Then he told the story of when he worked in Hinsdale, and he referred a 12 year old girl (who lived nearby) with a brain tumor down to Children's in Chicago. They saw her and then sent her back to Dr. X-Ray. He told them he didn't want to treat her, he wasn't a pediatric radiologist, she should be with specialists.
They told him she wasn't going to make it, but she might be able to get 6 more months, and it would be a shame if she had to spend them commuting 80 miles round trip every day for radiation. So he treated her. She made it for 3 more months. And he said then that he never wanted another case like this.
"But she did make it to Disneyworld, or Hawaii or somewhere. . .one of those Make a Wish trips." He went on to say that he now tells terminal patients who are thinking of taking a trip somewhere to "Go now, not later."
So. He's tasted this sadness before and wants no more of it. I don't blame him one bit. But it makes the Drs. like Markus shine as that much more heroic, doesn't it?
I asked Dr. X-Ray if he believes, as posters all over the cancer center and billboards all over Colorado proclaim, that "Love Heals." (That is, this is the Rocky Mountain Cancer Center's ad campaign that is quite ubiquitous: Love Heals.)
He shrugged and said, "Sure. There are studies that show terminal people will die just after a big even like a graduation or wedding and not right before." It says something when a person responds to a "what do you believe?" question with a citation of a scientific study.
Finally, I asked him a probing question when he first entered the room. The first question, reported here last of all:
"So, Dr. Tanner," because that is his name, "Do patients often comment on the appropriateness of your name?"
He laughed as though this was the first time he's heard the suggestion. No, they don't. But he's heard of other doctors with either ironic or oddly appropriate names. Right in that moment, he couldn't think of one.
And neither could I.
Isn't that annoying? When you know you've heard examples of a thing, but cannot recall them for the right moment?
I'd like to go back to him in 2 weeks (because Dr. Tanner will be working on his own tan on vacation next week) with a bunch of examples for him.
And I'm sure you know of some. . .
Saturday, December 12, 2009
The Art of Radiation
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. . .
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. . .
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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