A friend sent me this link today. It's a good article, about how women aren't getting all the information they need to make informed decisions about their reconstruction. It talks about the reasons why some surgeons only mention the implant option, and not the more extensive, but more frequently successful TRAM flap options. The writer has done her research and describes the situation and the procedures very cleary.
http://www.nytimes.com/2008/12/23/health/23beauty.html?pagewanted=1&_r=1&hp
But, I have two problems with the article.
One. The title of the article is "The Price of Beauty: Some Hidden Choices in Breast Reconstruction." I find this so irritating. I'm still struggling to articulate exactly what all the issues related to losing a breast are, so it's hard for me to write exactly why this is so galling. It feels misleading, dismissive, and minimizing. It seems to reduce the issues around post-mastectomy breast recontruction down to vanity.
Women do not have their breasts rebuilt because they are vain.
I didn't forgo reconstruction because I am not vain. (Heaven help me, I can't pass a mirror, or a storefront window without looking at my own reflection.)
It's a completely inappropriate title.
This article doesn't really discuss beauty at all. It discusses different ways to stretch, slice, re-assemble and introduce artificial elements to women's bodies.
This article does, however, discuss price. It talks about how the profit margin of various surgeries affects which information a woman is given.
This headline reminds me of one I saw years ago on the cover of the Rocky Mountain News. The article covered a court case in which the local government had been found guilty of discriminating against people on the basis of their sexual orientation. I don't know how such a case could have come to court, much less been successful. As far as I know, the Colorado State Constitution offers no protection to people who are being discriminated against on the basis of their ascribed alphabet letter, be it G, L, B, T, Q or S.
But I do remember that the wronged party won. And I do remember the conservative spin that this publication put on it.
All across the state, front pages trumpeted, "Gay Rights Tab: 40 million!"
What a joke. It should have read, "Unlawful Discrimination costs taxpayers 40 million!"
And if I was reading the New York Times on paper right now, instead of on-line, I would take the biggest fattest sharpie I could find and cross out, "The Price of Beauty." In it's place I would write a more truthful, more accurate and more controversial title.
"The Price of Capitalist Health Care: Hidden Choices In Breast Reconstruction."
With a title like this, the author surely would have been compelled to addressed my other complaint. If Ms. Singer is trying to reveal the hidden choices, why does she not mention the really obvious one, not having reconstruction at all.
Maybe she and everyone else who writes about and talks about and performs these surgeries without mentioning it thinks this option doesn't need to be discussed because it's obvious. But that's just silly.
Doctors are in an extrememly powerful position. They exert their influence over patients not just throught the options they discuss, but also throught the ones they don't discuss. Imagine you are unhappily pregnant and your doctor discusses the possible termination options without mentioning the "obvious" choice of letting the pregnancy run it's course. Wouldn't you feel that he was steering you in a direction. Of course!
Imagine now, that you don't live in today's liberal culture. Instead, imagine that you live in a culture where the site of a pregnant women is as unsettling and questionable as say, the sight of a woman with only one breast.
How will you even have the courage to consider the option that your own trusted doctor doesn't even deem valid enough to mention?
The choice to forgo reconstruction is not obvious. And yet, it's a valid, safe, inexpensive, option that involves considerably less time, effort and pain than the alternatives. Every doctor discussing mastectomies should be offering this to his/her patient.
Especially considering that, unlike all the other options, this option allows you to easily change your mind later on.
How many mastectomy patients would wait a few months, or a year, or a decade, if they knew that they could have their reconstruction completed after the surgery?
If my own experience is any indication, women are led to believe that they need to have the reconstruction initiated on the same day they have their breast removed. We are led to believe that choosing to live without a breast would be unspeakably bizarre.
It's just not true. But who's telling us, unless we ask? And how do we ask intelligent questions about things we don't understand? And how do take the time to read and research and understand these complex issues when we feel like our lives are at stake if we don't hurry up and do something!
Tuesday, December 23, 2008
Saturday, December 6, 2008
Yes
On Sunday, we met for breakfast at Bob Evans. All my family that lives in Maryland was there. My mother, sister, grandmother, brother-in-law, and two nephews came. So did my Aunt who lives in Virginia. It was a perfect opportunity for K and I to reveal the secret we've been keeping for weeks.
Well, it wasn't totally a secret. I told my mom right away. But, for everyone else, we wanted to wait and tell them in person. After our breakfast announcement, I told Aunt C. on the phone. I guess my cousins and Uncle G. might find out by talking to her, or by reading this blog...if I don't call them soon. Sorry! Maybe I'll call you today, because I'd rather you hear it from me than read it on this blog.
But even if you read it on this blog, it'll be better than the way my best friend from high school found out. She heard it at work, from a woman she didn't recognize, who turned out to be the grown-up little sister of another friend we'd had in school. This woman knew about it because she'd seen it on my sister's facebook.
I'm getting married.
This is startling to a lot of people. I mean, I wasn't even dating anyone!
But, 12 years ago I was. We were pretty serious. We were pretty happy. I was pretty young. And so, my answer to that first proposal was, "Sweetheart, I'm not the marrying kind. But if I was, you're the kind I'd marry."
At least, that's what I've been told. I don't remember saying that at all. What I do remember saying is, "The very idea of getting married makes me want to take a cold shower."
So, things got kind of weird between us and we stopped dating. But we stayed friends, and always loved each other. I'm sure we would have gotten together again at some point, except that we never managed to both be single at the same time.
For over a decade now, I've been asking myself, "What would have happened if I had said yes to K?" I never know the answer, but I'm always sure that it would have been something good. I'm always sure that we would have been happy and that we would still be together.
I feel so incredibly lucky that I got a second chance to answer the same question from the same person. And I feel absolutely certain that this time, I got it right.
Well, it wasn't totally a secret. I told my mom right away. But, for everyone else, we wanted to wait and tell them in person. After our breakfast announcement, I told Aunt C. on the phone. I guess my cousins and Uncle G. might find out by talking to her, or by reading this blog...if I don't call them soon. Sorry! Maybe I'll call you today, because I'd rather you hear it from me than read it on this blog.
But even if you read it on this blog, it'll be better than the way my best friend from high school found out. She heard it at work, from a woman she didn't recognize, who turned out to be the grown-up little sister of another friend we'd had in school. This woman knew about it because she'd seen it on my sister's facebook.
I'm getting married.
This is startling to a lot of people. I mean, I wasn't even dating anyone!
But, 12 years ago I was. We were pretty serious. We were pretty happy. I was pretty young. And so, my answer to that first proposal was, "Sweetheart, I'm not the marrying kind. But if I was, you're the kind I'd marry."
At least, that's what I've been told. I don't remember saying that at all. What I do remember saying is, "The very idea of getting married makes me want to take a cold shower."
So, things got kind of weird between us and we stopped dating. But we stayed friends, and always loved each other. I'm sure we would have gotten together again at some point, except that we never managed to both be single at the same time.
For over a decade now, I've been asking myself, "What would have happened if I had said yes to K?" I never know the answer, but I'm always sure that it would have been something good. I'm always sure that we would have been happy and that we would still be together.
I feel so incredibly lucky that I got a second chance to answer the same question from the same person. And I feel absolutely certain that this time, I got it right.
Thursday, December 4, 2008
Choose Your Favorite Entry
Finally, I've got my technical problems fixed and am able to post on this blog again. Now I'm just wondering...what happened to November!?
If you haven't totally given up on this blog by now...if you still check it once in a while...if you ever read it, I could use your advice!
My cousin E...who is a published author herself and knows about such things, thinks I should write a book proposal for my Double Whammy Diary. She thinks I've got a third of a book written already, and that my story is timely and that my perspective is valuable. She doesn't think I need to do much extra work to get a book deal. Her suggestion is, send a brief proposal and a few of my favorite blog entries to publishers who might be interested.
My problem is...I don't know which ones to print!
Do you have suggestions? Which were your favorites? Which ones made you laugh out loud. Which ones did you keep thinking about after you read them? Which ones seemed totally original? Which ones made you wish there was more to read? Which ones would make you decide to take a chance on an unknown author, if you were a publisher?
I'd love to know!
Thank you, thank you, thank you, for believing in me.
P.S. If you haven't heard alread, I'm getting married! More on that later.
If you haven't totally given up on this blog by now...if you still check it once in a while...if you ever read it, I could use your advice!
My cousin E...who is a published author herself and knows about such things, thinks I should write a book proposal for my Double Whammy Diary. She thinks I've got a third of a book written already, and that my story is timely and that my perspective is valuable. She doesn't think I need to do much extra work to get a book deal. Her suggestion is, send a brief proposal and a few of my favorite blog entries to publishers who might be interested.
My problem is...I don't know which ones to print!
Do you have suggestions? Which were your favorites? Which ones made you laugh out loud. Which ones did you keep thinking about after you read them? Which ones seemed totally original? Which ones made you wish there was more to read? Which ones would make you decide to take a chance on an unknown author, if you were a publisher?
I'd love to know!
Thank you, thank you, thank you, for believing in me.
P.S. If you haven't heard alread, I'm getting married! More on that later.
Pockets and Bubbles
I love my little pink prosthesis, Phyllis. I love knowing she’s there and I love the pressure of her weight against my damaged skin and I love the way she saves my figure in in a tight T-shirt. I love to hold her in my hand and to squeeze her and play with the shy and retiring little nipple. Unlike a real nipple, the more I touch it, the more it sinks into the fleshy hill behind it. It practically disappears if I press right on it, but it always comes back after a few minutes.
But lately, despite her charms, Phyllis is giving me trouble. I don’t lose her anymore, thank goodness. Years ago, Mom sent me a set of black and red zippered bags for my birthday. They were pretty, but they weren’t anything super-special. They were just the kind of thing you would use to organize your suitcase or your top dresser drawer. She apologized at the time for not coming up with a better gift idea, but I still cherish these bags years after I've forgotten or used up other, showier presents. They are pretty, and useful, and fit my strict color scheme. Best of all, there always seems to be one in the perfect size and shape whenever I suddenly have a need for such a thing. I've used them for more purposes than I can count and the medium sized one is now the perfect home for Phyllis to share with my compression sleeve and the pink music festival style bracelet that annouces " ALERT:LYMPHEDEMA No Blood Tests, Blood Pressure, No I.V. or Injections Into this Arm!”
Now that I have a place to put her, I do a good job of remembering to put her away every night. My problems start when I am getting dressed the next morning.The two bras I bought the day I got her each have a little pocket sewn into the cup. She rides in there and it keeps her from moving around on her own. Also, it’s just more attractive. She’s hidden from view. If I’m wearing something low cut, and bend over to pick something up, and someone happens to see down my blouse far enough to notice that something is off*, they might notice that my chest looks unbalanced. They might notice that the silky black fabric is doing something a little different on the right side than it is on the left, but the details of the situation are not entirely obvious. They won’t see what looks like a shiny chicken cutlet peeking out between my body and my lingerie.
More importantly, I don’t see it if I happen to glance down my own blouse. I hate the way that looks. There is my smooth, clean, healthy skin. There is my cute, stylish undergarment. And there, nestled between them like an over-zealous chaperon, sits this fatty cold-cut. It cleaves to my skin in the center, but peels away at the edges. The look is sloppy and unsettling, like I left the body factory before I was fully assembled. It makes me sad to think of myself like that.
The problem is, if I use the little pocket, I can’t get her out again without practically undressing. This makes an awkward follow up to my frequent invitation, “Hey, wanna see my fake breast?” When I can’t plunge into my neckline and whip her out at a moments notice, I feel like I shouldn't even mention her existence. Being forced to err on the side of modesty and tact might seem like another plus side to using the pocket, but it’s not. Shameless exploitation of show and tell opportunities is one of the entitlements that comes along with breast cancer survivorship, and I like to make full use of it.
The other problem is, I’m pretty sick of having just these two servicable, but dull brazierres to choose from. I long for the black and cream colored lace I bought at Soma during a shopping spree with Iona last Thanksgiving. I sorely miss the cute pink racer-back that snaps in front and works great under tank tops. I sigh and shrug at department story manikins in their tempting underwire fashions with the pretty matching panties. I don’t even think about trying things on anymore because the voice in my head says, "Not for me. Not for me."
But it's not as pitiful as it sounds. I'm probably just being lazy. I think it's time to sit down with a needle and thread and figure out how to do some custom alterations to my undergarments. I'm developing a plan for fast application of easy-exit pockets. If it works out, I can buy and wear any bra I choose.I’ll still be able to bring Phyllis out at parties, but I won’t have to worry about random peek-a-boos. I won’t have to worry about her drifting over to the center of my chest, and I won’t have to worry about her sticking to my skin. She soaks up my body heat nicely after a few minutes, but when I first tuck her in, she’s always bitingly cold.
And there are hygienic concerns. I mean, really. What if I get sweaty? How often should I wash her? What should I use? Dish soap? Woollite? What about my lotion, my underarm deodorant, my perfume? These things might have a degrading effect over the long term. I don’t remember if she came with care instructions. If she did, I’ve discarded them by now. Or, they’re tucked in a storage shed twelve thousand miles from here.
I don’t even know what she’s made of.
The inside substance reminds me of silly putty, but softer. It reminds me of jello, but firmer. It reminds me of memory foam, but it’s not as firm as that. Overall, Phyllis seems very fragile and delicate. The outer surface, which appears to be responsible for holding the whole thing together and creating it’s pleasing shape, is nothing more that a clear plastic sheet several times thinner than a Ziplock bag. It’s more like the free bags you peel off the staticky roll in the produce aisle. I try to re-use those bags, but they just don’t seem up to the task of constant occupation. I use Phyllis almost every day!
What is going to become of her?She’s already starting to change. When I first got her, all her surfaces were smooth. Now, on her back side (which is my problem area too,) she’s developed some unsavory bumps. Multiple air pockets have formed between her pinkish bulk and the transparent sheet of her skin. At first these bubbles were small and pretty evenly distributed, but they’ve started to merge. Now there’s one big blister the size of a quarter, where the casing has completely separated itself from the filling. It’s driving me nuts. I want to prick it with a pin and force the extra air out. Everyone I talk to says this is a bad idea. But when I show it to them, they can understand the temptation.
I wonder what would happen if I popped it? Could I make a little round hole in the plastic without damaging the integrity of the whole thing. Would the surface start to rip? Would the inside start to squeeze out like toothpaste? Would a little dot of superglue save it? Would it need a Band-aid?Thank goodness the bubble has formed on the back side. If it somehow moved to the front, and settled into the center, the results would be devastating. My adorable little nipple would end up looking like the empty reservoir at the tip of a french letter. Forgive me for the U.K. euphemism. I cannot bring my self to write the C-word. (If you don’t know the phrase, or for a fascinating historical account, go to http://en.wikipedia.org/wiki/French_letter) I cannot bring myself to write the word, because the very idea of such an allusion turns my stomach.
What would I do if this happened? Disgust at one's own prosthesis is not quite close enough to home to be called self-loathing, but it's in the neighborhood. I’ve got enough body-image issues to deal with since my surgery. If that air pocket bubbles up under my nipple, I’ll settle for a gym sock stuffed C-cup. Phyllis would be in the trash faster than you can blink.
Like I said at the beginning, I love Phyllis. But, sometimes love just isn’t enough.
*I first typed the word “off” in the third paragraph as a way to say “not quite right.” I laughed at the double meaning when I re-read it. Something certainly is "off" when it comes to my chest, and we know exactly what it is! Looking the word up in the Thinkmap Visual Thesaurus (http://www.visualthesaurus.com/) that my sweetheart recently bought us a subscription for, I found that almost all the definitions for the word “off” seem strangely accurate in this context.
a. Not in operation or operational
b. Below a satisfactory level
c. In an unpalatable state
d. Not performing or scheduled for duties
And my favorite:
e. Not plugged in or connected to a power source.
But lately, despite her charms, Phyllis is giving me trouble. I don’t lose her anymore, thank goodness. Years ago, Mom sent me a set of black and red zippered bags for my birthday. They were pretty, but they weren’t anything super-special. They were just the kind of thing you would use to organize your suitcase or your top dresser drawer. She apologized at the time for not coming up with a better gift idea, but I still cherish these bags years after I've forgotten or used up other, showier presents. They are pretty, and useful, and fit my strict color scheme. Best of all, there always seems to be one in the perfect size and shape whenever I suddenly have a need for such a thing. I've used them for more purposes than I can count and the medium sized one is now the perfect home for Phyllis to share with my compression sleeve and the pink music festival style bracelet that annouces " ALERT:LYMPHEDEMA No Blood Tests, Blood Pressure, No I.V. or Injections Into this Arm!”
Now that I have a place to put her, I do a good job of remembering to put her away every night. My problems start when I am getting dressed the next morning.The two bras I bought the day I got her each have a little pocket sewn into the cup. She rides in there and it keeps her from moving around on her own. Also, it’s just more attractive. She’s hidden from view. If I’m wearing something low cut, and bend over to pick something up, and someone happens to see down my blouse far enough to notice that something is off*, they might notice that my chest looks unbalanced. They might notice that the silky black fabric is doing something a little different on the right side than it is on the left, but the details of the situation are not entirely obvious. They won’t see what looks like a shiny chicken cutlet peeking out between my body and my lingerie.
More importantly, I don’t see it if I happen to glance down my own blouse. I hate the way that looks. There is my smooth, clean, healthy skin. There is my cute, stylish undergarment. And there, nestled between them like an over-zealous chaperon, sits this fatty cold-cut. It cleaves to my skin in the center, but peels away at the edges. The look is sloppy and unsettling, like I left the body factory before I was fully assembled. It makes me sad to think of myself like that.
The problem is, if I use the little pocket, I can’t get her out again without practically undressing. This makes an awkward follow up to my frequent invitation, “Hey, wanna see my fake breast?” When I can’t plunge into my neckline and whip her out at a moments notice, I feel like I shouldn't even mention her existence. Being forced to err on the side of modesty and tact might seem like another plus side to using the pocket, but it’s not. Shameless exploitation of show and tell opportunities is one of the entitlements that comes along with breast cancer survivorship, and I like to make full use of it.
The other problem is, I’m pretty sick of having just these two servicable, but dull brazierres to choose from. I long for the black and cream colored lace I bought at Soma during a shopping spree with Iona last Thanksgiving. I sorely miss the cute pink racer-back that snaps in front and works great under tank tops. I sigh and shrug at department story manikins in their tempting underwire fashions with the pretty matching panties. I don’t even think about trying things on anymore because the voice in my head says, "Not for me. Not for me."
But it's not as pitiful as it sounds. I'm probably just being lazy. I think it's time to sit down with a needle and thread and figure out how to do some custom alterations to my undergarments. I'm developing a plan for fast application of easy-exit pockets. If it works out, I can buy and wear any bra I choose.I’ll still be able to bring Phyllis out at parties, but I won’t have to worry about random peek-a-boos. I won’t have to worry about her drifting over to the center of my chest, and I won’t have to worry about her sticking to my skin. She soaks up my body heat nicely after a few minutes, but when I first tuck her in, she’s always bitingly cold.
And there are hygienic concerns. I mean, really. What if I get sweaty? How often should I wash her? What should I use? Dish soap? Woollite? What about my lotion, my underarm deodorant, my perfume? These things might have a degrading effect over the long term. I don’t remember if she came with care instructions. If she did, I’ve discarded them by now. Or, they’re tucked in a storage shed twelve thousand miles from here.
I don’t even know what she’s made of.
The inside substance reminds me of silly putty, but softer. It reminds me of jello, but firmer. It reminds me of memory foam, but it’s not as firm as that. Overall, Phyllis seems very fragile and delicate. The outer surface, which appears to be responsible for holding the whole thing together and creating it’s pleasing shape, is nothing more that a clear plastic sheet several times thinner than a Ziplock bag. It’s more like the free bags you peel off the staticky roll in the produce aisle. I try to re-use those bags, but they just don’t seem up to the task of constant occupation. I use Phyllis almost every day!
What is going to become of her?She’s already starting to change. When I first got her, all her surfaces were smooth. Now, on her back side (which is my problem area too,) she’s developed some unsavory bumps. Multiple air pockets have formed between her pinkish bulk and the transparent sheet of her skin. At first these bubbles were small and pretty evenly distributed, but they’ve started to merge. Now there’s one big blister the size of a quarter, where the casing has completely separated itself from the filling. It’s driving me nuts. I want to prick it with a pin and force the extra air out. Everyone I talk to says this is a bad idea. But when I show it to them, they can understand the temptation.
I wonder what would happen if I popped it? Could I make a little round hole in the plastic without damaging the integrity of the whole thing. Would the surface start to rip? Would the inside start to squeeze out like toothpaste? Would a little dot of superglue save it? Would it need a Band-aid?Thank goodness the bubble has formed on the back side. If it somehow moved to the front, and settled into the center, the results would be devastating. My adorable little nipple would end up looking like the empty reservoir at the tip of a french letter. Forgive me for the U.K. euphemism. I cannot bring my self to write the C-word. (If you don’t know the phrase, or for a fascinating historical account, go to http://en.wikipedia.org/wiki/French_letter) I cannot bring myself to write the word, because the very idea of such an allusion turns my stomach.
What would I do if this happened? Disgust at one's own prosthesis is not quite close enough to home to be called self-loathing, but it's in the neighborhood. I’ve got enough body-image issues to deal with since my surgery. If that air pocket bubbles up under my nipple, I’ll settle for a gym sock stuffed C-cup. Phyllis would be in the trash faster than you can blink.
Like I said at the beginning, I love Phyllis. But, sometimes love just isn’t enough.
*I first typed the word “off” in the third paragraph as a way to say “not quite right.” I laughed at the double meaning when I re-read it. Something certainly is "off" when it comes to my chest, and we know exactly what it is! Looking the word up in the Thinkmap Visual Thesaurus (http://www.visualthesaurus.com/) that my sweetheart recently bought us a subscription for, I found that almost all the definitions for the word “off” seem strangely accurate in this context.
a. Not in operation or operational
b. Below a satisfactory level
c. In an unpalatable state
d. Not performing or scheduled for duties
And my favorite:
e. Not plugged in or connected to a power source.
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