I've agreed to be a volunteer speaker for a breast cancer awareness organization that is starting up here in Colorado. The organization is called "Breast Friends." Their website is http://www.breastfriends.com/. Unlike alot of other BC groups, this one is focused not on the patient, but on their friends, family and their communities. The whole idea is, "no woman should have to face breast cancer alone."
Here's what their home page says:
Often, breast cancer patients, especially the newly diagnosed, are in the greatest emotional pain, but are the least able to ask for help. Breast Friends teaches the friends and family of cancer patients specific ways to offer support, helps them understand what the patient is going through, and suggests useful resources for the patient and her family.
Addressing a woman's cancer is a sensitive issue, but we all want to help. However, friends often worry about not doing it "right". As a result, time passes, and to avoid doing it "wrong," we often don't do anything at all. Then, more time passes, and by then we are too embarrassed to pick up the phone and make the call. The message of Breast Friends is that it's never too late to make contact and provide useful and appreciated support to those we love who are facing this terrible disease.
They already have material put together that they hand out to survivor-supports. I'll be incorporating that into my talk, along with some personal stories about being a survivor myself. I'm also reaching out to the survivors and supporters that I know, to ask their opinions on the topic. I'd like yours, reader, as well.
If you're a breast cancer suvivor/patient, what did your friends and family do that was useful and meaningful. What did you ask for and how did your community come through for you? What do you wish you had asked for, or wish you'd handled differently? Was there anything anyone did that was more of a hassle than a help?
If you're a supporter of a breast cancer survivor/patient, what have your struggles been? What has made it easier for you to reach out? What has made it difficult? What do you feel proud of? What do you wish you'd done differently?
Back when I had cancer (I LOVE being able to talk about that in the past tense) I was floored by the creativity and generosity with which my friends and family shared their love and support with me. I still feel like swimming in that wave of care and kindness made it almost worth the nightmare of being diagnosed. I don't just want every other cancer suvivor to experience the same kind of affection and thoughtfullness that I did, I want every other person on the planet to experience it. Of course, I expecially want women dealing with breast cancer to feel as loved and cherished as I did.
And yet, when a friend of mine was recently diagnosed with breast cancer, I totally froze up inside and didn't know what to do.
Here are the thoughts and feelings that make it hard for me to reach out to her.
I don't really know her all that well. I'm sure she has lots and lots of other freinds and family that are bombarding her with their offers of assistance. I'd probably just be bothering her if I called her. I don't really know what she's going through, or where she's struggling. If I call and make suggestions about how I can help, it will sound like I think I know better than she does what she needs. If I say, "I'll do anything you want!" that will sound totally insincere. If I say, "I'll help out where I can," that sounds like I don't really want to be there for her. If I say, "let me know what I can do," then it's like I'm making it her responsibility to figure out what I can do for her. She's probably feeling overwhelmed already, I don't want her to feel like telling me how I can help her is one more thing she needs to add to her to-do list. She probably needs lots of rest and down time. If I call her I might be inturrupting her. If I send her an email, she'll feel like she needs to be polite and answer it. If I ask her when her appointments are, it will just sound like I'm being nosy. Everybody is talking about breast cancer all the time anymore. It's like it's our nation's new hip and cool disease. I don't want her to think I'm just jumping on some bandwagon and trying to be cool by volunteering to help some poor breast cancer patient.
Yes, I have all these thoughts and fears, even thought I'm a breast cancer survivor myself. Maybe I'm just a paranoid freak. But, I figure if I am having these hesitations, other people must be having them too. I hate to think of anyone going through what I went through this summer without a strong support network holding them up.
And, compared to what most breast cancer patients go through, what I went through this summer was easy-peasy-pie. I didn't have chemo, or radiation, or hormone-therapy. My health insurance covered the bulk of the cost of all my charges without a hitch. I didn't need to travel far for any of my diagnostic or treatment appointments. I healed up without complications. My surgeon, physical therapist, oncologist and all their staff were dedicated angels who treated me with respect and affection.
Despite all these blessings, the whole adventure was a bizarre nightmarish labyrinth peppered with surprise sinkholes of despair. I needed the buoyancy of my community's care, and I needed it bad. Women whose treatments are less swift and sure than mine was must need it even worse. I hope volunteering to do these talks can help them get it even better.
I'm also looking forward to the talk because I absolutely love getting up in front of big groups of people and telling them what I think about things. (I guess that's why I like writing this blog, too..) It seems like everyone would want a chance to do this. Aren't we all going around most of the time wishing people really listened to us, and craving proof that our opinions matter? It's hard for me to understand why there aren't scores of people offering to give public talks for free. But, according to many studies, glossophobia (fear of public speaking) doesn't just beat out arachnaphobia and claustraphobia, it is actually more common that necrophobia (fear of death.) I guess I really am a freak of nature.
It seems like I've been this way forever.
In 3rd grade, I lied to my teacher, Ms. Young, whom I adored. Any girls who were taking ballet could be sugar-plum fairies in the holiday show. I'd never had a dance lesson in my life. We couldn't afford such things. But I raised my had with the lucky girls because I wanted to be up on that stage with the spotlight shining down on me. When I got home and told my mom that we were supposed to bring our tutu's to rehersal next week, she didn't scold me for lying or even embarrass me my making me borrow one. Instead, she sewed several yards of crimson tulle onto the waist of a Goodwill tanktop, and stitched 2 inches of crotch into the hem. It was beautiful and perfect and more than made up for the fact the the "stage" turned out to be the center of our classroom floor with the chairs pushed out of the way. Instead of a spotlight, we spun and twirled under our usual florescent ceiling lamps. I still feel a little bitter about that.
In 8th grade, I auditioned for cheerleading. I went to prep-practice after school every day to learn the words and motions of the cheers. I was good at it, loud and energetic. Everyone in the prep-group knew I would get picked. Highschool was going to be great. No more teasing. No more eating lunch alone. I would be a cheerleader! At try-outs, each girl chose a number out of a hat, to decide what order we would line up in. I got 8, my lucky number. When it was my turn to step up alone onto the real stage in our cafeteria, I stood their looking down at the volunteer moms with their lipstick and clipboards. I was ready to do my cheer perfectly as soon as they told me to start. But they didn't tell me to start. Instead, they asked me a totally unexpected question.
"What's your name, honey?" The words and rhythm of the cheer were pounding in my head. I wish I could remember them now. Back then, they were so clear, they drowned out all my other thoughts. I looked at the moms and nodded to let them know I was ready to start.
"We just need to write down your name, sweetie." That seemed reasonable, and I wanted to tell them, but those words weren't in the cheer, so I couldn't think of them.
"Just tell us your name, and then you can start." They were kind, but impatient. I was a great cheerleader, but they would never know it, because I couldn't...with everyone staring at me like that... remember my own name. I walked off the stage all the way home. I still wonder how my life might have been different if I had been a Walkersville High School Cheerleader.
For one thing, I wouldn't have been captain of the Debate Team or competed in Speech and Forensics. And I wouldn't have puzzled and frustrated Jennifer Shezman, the english teacher who served as our coach and advisor. Poor Ms. S did her best with all of us. She especially nurtured and encouraged me, because I had so much potential.
I exelled at extemporaneous speaking. Arriving at the competition with no idea what I would be asked to talk about, I was completely at ease. When handed a slip of paper that said, "Should flag burning be illegal?" or "Should the U.S. Colonize the Moon?" I always took less than the allotted 5 minutes to organize my thoughts and compose myself. Almost effortlessly, I opened my mouth and words would come out. My talks were entertaining, articulate, and prize-winning. Ms. Shesmann liked this about me. This didn't bother her at all.
What bothered her was that I prepared for the planned speech competetion in the exact same way. I didn't outline my thoughts ahead of time, research the subject or practice in front of the mirror. I didn't even consider the topic, though we were given it weeks and weeks in advance of the contest. Why should I, when I was winning these contests too?
I've always thought that what I needed, what Ms. Shesmann couldn't offer me, was deeper motivation. If I had wanted to give the best talk I could possibly give, not just one that was good enough to win, I might have prepared better. I might have written rough drafts and asked my sister to listen to it. This morning I was thinking how, finally, I have a deeper motivation for giving a really good talk. I really do want to motivate and educate people, so they can provide the strong and flexible support network that breast cancer patient/survivors need.
But, now that I'm writing all this, I'm having a new thought. Maybe my problem in high school wasn't just lack of motivation. Maybe my experience at cheerleader tryouts was still affecting me. Maybe, since being over-focused and over-prepared on that day had been my downfall, I started over-compensating. Maybe my unconcious strategy was to memorize nothing, fix my mind on emptiness, so that I would be prepared for whatever surprise the organizers threw my way. In middleschool, I had known exactly what words I was going to say, and exactly how to say them. I ended up silently mortified. In high school, with no idea what I would talk about or how, I chattered triumphant.
This week, as I sit down to write my speech, the prize of possibly helping other women outshines the chance to win a $25 gift certificate from the Kiwanis Club. I feel plenty motivated to organize my thoughts and gather research well ahead of showtime. I think I can also be flexible and spontaneous enough to tailor my talk to whatever audience shows up. But, just to be safe, I think I'll start the talk with a memorized introduction. It will go like this, "Hi. My name is..."
Monday, February 23, 2009
Friday, February 20, 2009
The Stake In My Chest
The documentary Absolutely Safe, which explores the medical safety of widely used silicone breast implants, is playing for free at the University of Colorado at Boulder this Thursday, February 26th.
The 81-minute film starts at 6 p.m. in room W100 of the BruceCurtis Building and will be followed by a panel discussion led by the filmmaker, Carol Ciancutti-Leyva, herself.
I'll be there and I hope you will be there too.
(The BruceCurtis Building is between the Economics and Education buildings, on campus along Broadway, across from College Avenue, southeast ofthe Economics Building. Park in the Euclid Avenue Autoparkeast of the University Memorial Center at Broadway and Euclid.)
J. put up a poster for the event at the Boulder Medical Center. It was taken down in less than an hour. Maybe they have a policy about taking down all unauthorized posters? Maybe they take everything down once a week, no matter the content, and she just happened to put it up on the worng day? I don't know. Perhaps the workers there would really and truly love for all their patients to have the fullest possible knowledge about their health and their options. Perhaps the healthcare professionals themselves are interested in continuing their own education about these issues. Perhaps the poster fell down and got thrown out by accident. Maybe J used damp tape, bent tacks, unsticky glue.
But it seems weird, doesn't it. It just seems to hightlight the fact that our medical system, being run and regulated as part of our capitalist system, is a business. Of course it is. If you sold Subarus, you would tear a "Buy American" poster down from your showroom wall, wouldn't you?
When I was selling drugs, for Johnson&Johnson and Boehringer Ingelheim, I spent most of my days trying to talk to doctors. Of course, I wanted a chance to tell them why "my" angiotensin receptor blocker was better than valsartan. I wanted to give them reasons why they should prescribe an anticholinergic bronchodialator instead of corticosteroids for their chronic obstructive pulmonary disorder patients. I wanted to explain how balancing gamma-amino-butyric-acid level could prevent chronic migraines.
They didn't really want to hear this all this, any more than you want to read it. But they would listen, for a minute, if they knew me. If they liked me and respected me, they might listen for 30 seconds, or even a full minute, to some of the information it had taken me weeks and weeks to absorb.
To get them to know, like and respect me, I had to first get to know, like and respect them. So most of the time, instead of talking, I tried to listen. I asked them how their day was going. I asked them what they were proud of in their practices. I asked them what their challenges were.
Again and again I heard about the frustrations of dealing with the reimbursment systems that make up the complicated web of our capitalist health care system. Doctors would love to prescribe the very best treatment for each patient. But, for most patients, it's more important to get a prescription that will be covered by their insurance plan. The medical assistants and administrative staff people would be happy to look up each patients plan and find out which drugs are available to them. They would be happy to do it, if they had the time. But, they don't have the time. So, instead of learning which medications work the best for which patients, most health care workers memorize which medications will be covered for the majority of their patients.
This makes sense. Everyone involved here is doing their job in the best way they can. But it doesn't really work out for the patients, or the doctors. It doesn't even work out for the drug companies. According to the ideals of capitalism, the company that made the best medicine, would be rewarded with the most sales. But in our convoluted arrangement, the company that brokers the best deal with insurance companies, sells the most and makes the most profit. The more profit they make, the more powerful they are. The more powerful they are, the more they are able to muscle their way onto formularies and influence public opinion. (Formularies are the lists of medications that a given insurance plan will cover.)
Who is the bad guy here? It's not the doctors. From my personal experience with over 300 specialists and primary care practitioners over the last few years, I believe almost all of them are decent hard-working intelligent people who want the very very best for the people they treat.
It's not the patients. Most patients do what they can to educate themselves, despite the inherent vulnerability of being ill, and the overwhelming flood of conflicting information, biased websites and television advertisments.
I don't think we can blame the drug companies either. Yes, they are trying to make a profit off of sick people. But, that is what they are set up to do. Because they make huge profits with successful medicines, they are able to invest million of dollars into the research and testing of drugs that may or may turn out to be useful. Without the lure of potential gargantuan profits, they wouldn't be able to take the risks that result in almost all of our medical breakthroughs.
I am especially hesitant to blame the insurance companies. Yes, I know there are flaws in the way they operate, but the basic principle is good. Its actually kind of a socialist thought: let's all pay some money towards health care, even when we don't need it, so that those of us who are sick can use it when we do.
The fact is, it's not working. Good medicines go unused. Outdated or unsafe treatments grow in popularity. Patients do not know or understand their choices. Doctors spend less time with more patients and still worry about making payroll each month.
There's no bad guy to blame and no simple solution. Our healthcare system is a big sticky mess and I'm glad we have someone as good and as smart as Mr. Obama looking into the problem. (If you don't think he's smart and good, I challenge you to read his books. I cannot imagine reading what he's written and continuing to doubt the man's integrity or intelligence.)
I don't want to go back to my job as a corporate drug pusher, but I'm so glad I did it for a while. The experience has given me a much broader perspective than the one I inherited from my father, who delighted in street drugs and eyed the company pill with suspicion and distain.
If we are going to solve our healthcare crisis, I think we need to look at the situation with the confindence that every single person working in the healthcare industry is doing the best she or he can in a difficult situation. They are doing their very best at helping patients. And, they are doing their best at remaining financially viable. (For big companies, financial vibility rests on outpacing last years fatso profits every single year.) I don't envy them this position of striving to achieve these two often mutually exclusive goals simultaneously. It would drive me crazy. I think it drives many of them crazy too.
This explains how many of the really bad healtcare decisions get made, sheer crazy.
So, I can't be mad at the Boulder County Medical Center, even if someone did take down the poster on purpose. And, I can't be mad at the two plastic surgeons in town who alledgedly "have their shorts in a bunch" over the upcoming film and discussion. It's completely natural and human to feel hostile towards something that seems to threaten your career, your livelihood and your very sense of self.
These men have performed hundreds of silicone implant surgeries in their careers. They believe they are helping women look and feel better about themselves. They take pride in performing safe and reasonable procedures with care and skill. How would they feel if they found out they had been putting all these patients of theirs at terrible risk to illness and loss? Well, I think they would feel pretty bad about themselves.
I think it makes sense that, instead of feeling bad about themselves, or even opening up a congnitive window to that possibility, they are feeling bad about us instead. They have bad feelings about the deluded filmmaker who is attacking their profession. They feel bad at the uppity college professor who whines about womens' rights. They feel bad at the mouthy ex-student who insists that optional surgery might be a worse experience that living forever without a right breast.
So, now I feel kind of bad too. I had the idea to go around town and personally invite the plastic surgeons in town. It's hard to challenge your life-long beliefs. It's gets even harder when those beliefs are part of what you do, part of who you are. I thought they might have an easier time of it if they knew they didn't have to do it alone. I thought they might actually consider attending, if a smiling woman dressed in pink assured them that they aren't the enemy. I thought they might feel welcome, and less threatened, if I reminded them that we all want the same things for their patients, healthy futures in bodies they feel good in.
But, I didn't get around to it. I didn't mapquest their office addresses. I didn't print out flyers. I didn't write personal notes encouraging them to show up.
And now, according to an email from "The Breastless Wonder," their P.R. person wants names of people to contact on "our side." I said, "Yes, please give them my number. I would love to talk to them." But, they might be dissapointed. I'm not on "our side." I'm not taking sides. I don't even believe in "sides" anymore.
Despite the fact that I am now, since Nov. 4th, proud to be a citizen of this nation called the "US," I just don't believe a "THEM" exists out there. I agree with President O when he writes, "We have a stake in each other."
So, this afternoon, despite the wind, I'm going to get on my bike and head out to the 3 plastic surgery offices in Boulder. I'm filling up my basket with posters and love notes. I'm going to remind these guys that the stakes we have are not the kind Buffy uses. They are the kind that help things grow.
The 81-minute film starts at 6 p.m. in room W100 of the BruceCurtis Building and will be followed by a panel discussion led by the filmmaker, Carol Ciancutti-Leyva, herself.
I'll be there and I hope you will be there too.
(The BruceCurtis Building is between the Economics and Education buildings, on campus along Broadway, across from College Avenue, southeast ofthe Economics Building. Park in the Euclid Avenue Autoparkeast of the University Memorial Center at Broadway and Euclid.)
J. put up a poster for the event at the Boulder Medical Center. It was taken down in less than an hour. Maybe they have a policy about taking down all unauthorized posters? Maybe they take everything down once a week, no matter the content, and she just happened to put it up on the worng day? I don't know. Perhaps the workers there would really and truly love for all their patients to have the fullest possible knowledge about their health and their options. Perhaps the healthcare professionals themselves are interested in continuing their own education about these issues. Perhaps the poster fell down and got thrown out by accident. Maybe J used damp tape, bent tacks, unsticky glue.
But it seems weird, doesn't it. It just seems to hightlight the fact that our medical system, being run and regulated as part of our capitalist system, is a business. Of course it is. If you sold Subarus, you would tear a "Buy American" poster down from your showroom wall, wouldn't you?
When I was selling drugs, for Johnson&Johnson and Boehringer Ingelheim, I spent most of my days trying to talk to doctors. Of course, I wanted a chance to tell them why "my" angiotensin receptor blocker was better than valsartan. I wanted to give them reasons why they should prescribe an anticholinergic bronchodialator instead of corticosteroids for their chronic obstructive pulmonary disorder patients. I wanted to explain how balancing gamma-amino-butyric-acid level could prevent chronic migraines.
They didn't really want to hear this all this, any more than you want to read it. But they would listen, for a minute, if they knew me. If they liked me and respected me, they might listen for 30 seconds, or even a full minute, to some of the information it had taken me weeks and weeks to absorb.
To get them to know, like and respect me, I had to first get to know, like and respect them. So most of the time, instead of talking, I tried to listen. I asked them how their day was going. I asked them what they were proud of in their practices. I asked them what their challenges were.
Again and again I heard about the frustrations of dealing with the reimbursment systems that make up the complicated web of our capitalist health care system. Doctors would love to prescribe the very best treatment for each patient. But, for most patients, it's more important to get a prescription that will be covered by their insurance plan. The medical assistants and administrative staff people would be happy to look up each patients plan and find out which drugs are available to them. They would be happy to do it, if they had the time. But, they don't have the time. So, instead of learning which medications work the best for which patients, most health care workers memorize which medications will be covered for the majority of their patients.
This makes sense. Everyone involved here is doing their job in the best way they can. But it doesn't really work out for the patients, or the doctors. It doesn't even work out for the drug companies. According to the ideals of capitalism, the company that made the best medicine, would be rewarded with the most sales. But in our convoluted arrangement, the company that brokers the best deal with insurance companies, sells the most and makes the most profit. The more profit they make, the more powerful they are. The more powerful they are, the more they are able to muscle their way onto formularies and influence public opinion. (Formularies are the lists of medications that a given insurance plan will cover.)
Who is the bad guy here? It's not the doctors. From my personal experience with over 300 specialists and primary care practitioners over the last few years, I believe almost all of them are decent hard-working intelligent people who want the very very best for the people they treat.
It's not the patients. Most patients do what they can to educate themselves, despite the inherent vulnerability of being ill, and the overwhelming flood of conflicting information, biased websites and television advertisments.
I don't think we can blame the drug companies either. Yes, they are trying to make a profit off of sick people. But, that is what they are set up to do. Because they make huge profits with successful medicines, they are able to invest million of dollars into the research and testing of drugs that may or may turn out to be useful. Without the lure of potential gargantuan profits, they wouldn't be able to take the risks that result in almost all of our medical breakthroughs.
I am especially hesitant to blame the insurance companies. Yes, I know there are flaws in the way they operate, but the basic principle is good. Its actually kind of a socialist thought: let's all pay some money towards health care, even when we don't need it, so that those of us who are sick can use it when we do.
The fact is, it's not working. Good medicines go unused. Outdated or unsafe treatments grow in popularity. Patients do not know or understand their choices. Doctors spend less time with more patients and still worry about making payroll each month.
There's no bad guy to blame and no simple solution. Our healthcare system is a big sticky mess and I'm glad we have someone as good and as smart as Mr. Obama looking into the problem. (If you don't think he's smart and good, I challenge you to read his books. I cannot imagine reading what he's written and continuing to doubt the man's integrity or intelligence.)
I don't want to go back to my job as a corporate drug pusher, but I'm so glad I did it for a while. The experience has given me a much broader perspective than the one I inherited from my father, who delighted in street drugs and eyed the company pill with suspicion and distain.
If we are going to solve our healthcare crisis, I think we need to look at the situation with the confindence that every single person working in the healthcare industry is doing the best she or he can in a difficult situation. They are doing their very best at helping patients. And, they are doing their best at remaining financially viable. (For big companies, financial vibility rests on outpacing last years fatso profits every single year.) I don't envy them this position of striving to achieve these two often mutually exclusive goals simultaneously. It would drive me crazy. I think it drives many of them crazy too.
This explains how many of the really bad healtcare decisions get made, sheer crazy.
So, I can't be mad at the Boulder County Medical Center, even if someone did take down the poster on purpose. And, I can't be mad at the two plastic surgeons in town who alledgedly "have their shorts in a bunch" over the upcoming film and discussion. It's completely natural and human to feel hostile towards something that seems to threaten your career, your livelihood and your very sense of self.
These men have performed hundreds of silicone implant surgeries in their careers. They believe they are helping women look and feel better about themselves. They take pride in performing safe and reasonable procedures with care and skill. How would they feel if they found out they had been putting all these patients of theirs at terrible risk to illness and loss? Well, I think they would feel pretty bad about themselves.
I think it makes sense that, instead of feeling bad about themselves, or even opening up a congnitive window to that possibility, they are feeling bad about us instead. They have bad feelings about the deluded filmmaker who is attacking their profession. They feel bad at the uppity college professor who whines about womens' rights. They feel bad at the mouthy ex-student who insists that optional surgery might be a worse experience that living forever without a right breast.
So, now I feel kind of bad too. I had the idea to go around town and personally invite the plastic surgeons in town. It's hard to challenge your life-long beliefs. It's gets even harder when those beliefs are part of what you do, part of who you are. I thought they might have an easier time of it if they knew they didn't have to do it alone. I thought they might actually consider attending, if a smiling woman dressed in pink assured them that they aren't the enemy. I thought they might feel welcome, and less threatened, if I reminded them that we all want the same things for their patients, healthy futures in bodies they feel good in.
But, I didn't get around to it. I didn't mapquest their office addresses. I didn't print out flyers. I didn't write personal notes encouraging them to show up.
And now, according to an email from "The Breastless Wonder," their P.R. person wants names of people to contact on "our side." I said, "Yes, please give them my number. I would love to talk to them." But, they might be dissapointed. I'm not on "our side." I'm not taking sides. I don't even believe in "sides" anymore.
Despite the fact that I am now, since Nov. 4th, proud to be a citizen of this nation called the "US," I just don't believe a "THEM" exists out there. I agree with President O when he writes, "We have a stake in each other."
So, this afternoon, despite the wind, I'm going to get on my bike and head out to the 3 plastic surgery offices in Boulder. I'm filling up my basket with posters and love notes. I'm going to remind these guys that the stakes we have are not the kind Buffy uses. They are the kind that help things grow.
Lunch with J
Dear Joanne, here is some of what I wrote after our first lunch. If you think it's okay, I'll post it on my blog.
The women's bathroom at "The Sink" in Boulder is about what you'd expect for a diner off campus. Not too dirty, not too clean. But, it's semi-private and that was all we needed. J pulled up her shirt and I pulled up mine. I wish I'd had friend like this when I was 13, a friend I liked and trusted enough to compare my blooming body with.
Well into adulthood now, we weren't show-and-telling our budding bosoms. We were comparing the places where they used to be.
Her chest looks different than mine. It's not just because she's had both breasts removed, though that was the first thing I noticed. The underlying shape of her rib cage seems different. The center of her chest reaches forward more than mine. "I need a hood ornament for my sternum," she jokes with her husband. Where my breast used to be, I have large bony lumps that stick out like the knuckles on a giant's fist. She doesn't seem to have these at all.
In some ways, having a mastectomy is like getting a permanant Xray. Our chests don't look like men's chests, or like the one's we had as girls. We can see things about our bodies, they way our bones are shaped, the way our muscles are connected, that other people can't see. Really, it's kind of cool.
The differences between us surprised me, but our sameness surprised me more. Last week I wrote about how much I've been hating the flabby puddle of fat the seems to pool under my skin, just beneath my incision. I thought this was a result of Dr. Rocco's kind efforts to leave me extra flesh in case of future reconstruction. I'd decided not to have additional surgery to clean it up. I couldn't be mad at Dr. Rocco herself, I adore and appreciate her too much. But I was mad all the same. I was mad at our culture's narrow mindedness regarding women. I was mad at the pervasive assumptions that would lead even an educated, thoughtful and devoted health care provider like Dr. R to make decisons for me, rather than discuss my options openly. I thought sexism was to blame for my flabby, puckered chest.
But J. has the same squishy spots below her fading scars, and she is confident her surgeons knew she would never get reconstruction. So now I think maybe this is just the best Dr. R could do. Maybe a certain bit of puffiness is normal for a mastectomy. I like thinking this. I feel better, knowing J's chest has a little padding left over too. Every since I saw her chest, I feel kinder towards my own.
I wonder why J's surgeons didn't question her judgement about forgoeing reconstruction. Maybe it was because she was in her 40's when she was diagnosed, rather than her 30's. Maybe it's because she was married, or because she'd already had a child. It seems like doctors and other people assume you don't need your breasts as much if they've already done their job: caught you a man and suckled a baby.
J did wonder what effect that choice would have on her kid. As young as he was at the time, he might grow up without being able to even remember her having breasts. I hadn't thought of this, but it seemed like a good point. What effect might it have on a child to grow up with a mother whose chest is flat and hard? Would that essentially change his perception of motherhood, of womanhood, of femaleness? Maybe it's a goofy question. Nurturing a child has more to do with your hands, face, arms, voice, legs and feet as it does your breasts. But, when your'e facing surgery like this, so much is serious, and so much is ridiculous, that it's hard to separate the silly from the sane.
Hi Mage- I LOVE this and you are totally welcome to use my name (full name if you want!). Just two corrections: Scott isn't my husband (partner) (<: and the first surgeon I went to thought I was nuts for not wanting reconstruction which is one of the reasons I didn't pick him. HE told me: "Women feel special about their breasts." I told him: "I feel special about my 7 year old and my life."
The women's bathroom at "The Sink" in Boulder is about what you'd expect for a diner off campus. Not too dirty, not too clean. But, it's semi-private and that was all we needed. J pulled up her shirt and I pulled up mine. I wish I'd had friend like this when I was 13, a friend I liked and trusted enough to compare my blooming body with.
Well into adulthood now, we weren't show-and-telling our budding bosoms. We were comparing the places where they used to be.
Her chest looks different than mine. It's not just because she's had both breasts removed, though that was the first thing I noticed. The underlying shape of her rib cage seems different. The center of her chest reaches forward more than mine. "I need a hood ornament for my sternum," she jokes with her husband. Where my breast used to be, I have large bony lumps that stick out like the knuckles on a giant's fist. She doesn't seem to have these at all.
In some ways, having a mastectomy is like getting a permanant Xray. Our chests don't look like men's chests, or like the one's we had as girls. We can see things about our bodies, they way our bones are shaped, the way our muscles are connected, that other people can't see. Really, it's kind of cool.
The differences between us surprised me, but our sameness surprised me more. Last week I wrote about how much I've been hating the flabby puddle of fat the seems to pool under my skin, just beneath my incision. I thought this was a result of Dr. Rocco's kind efforts to leave me extra flesh in case of future reconstruction. I'd decided not to have additional surgery to clean it up. I couldn't be mad at Dr. Rocco herself, I adore and appreciate her too much. But I was mad all the same. I was mad at our culture's narrow mindedness regarding women. I was mad at the pervasive assumptions that would lead even an educated, thoughtful and devoted health care provider like Dr. R to make decisons for me, rather than discuss my options openly. I thought sexism was to blame for my flabby, puckered chest.
But J. has the same squishy spots below her fading scars, and she is confident her surgeons knew she would never get reconstruction. So now I think maybe this is just the best Dr. R could do. Maybe a certain bit of puffiness is normal for a mastectomy. I like thinking this. I feel better, knowing J's chest has a little padding left over too. Every since I saw her chest, I feel kinder towards my own.
I wonder why J's surgeons didn't question her judgement about forgoeing reconstruction. Maybe it was because she was in her 40's when she was diagnosed, rather than her 30's. Maybe it's because she was married, or because she'd already had a child. It seems like doctors and other people assume you don't need your breasts as much if they've already done their job: caught you a man and suckled a baby.
J did wonder what effect that choice would have on her kid. As young as he was at the time, he might grow up without being able to even remember her having breasts. I hadn't thought of this, but it seemed like a good point. What effect might it have on a child to grow up with a mother whose chest is flat and hard? Would that essentially change his perception of motherhood, of womanhood, of femaleness? Maybe it's a goofy question. Nurturing a child has more to do with your hands, face, arms, voice, legs and feet as it does your breasts. But, when your'e facing surgery like this, so much is serious, and so much is ridiculous, that it's hard to separate the silly from the sane.
Hi Mage- I LOVE this and you are totally welcome to use my name (full name if you want!). Just two corrections: Scott isn't my husband (partner) (<: and the first surgeon I went to thought I was nuts for not wanting reconstruction which is one of the reasons I didn't pick him. HE told me: "Women feel special about their breasts." I told him: "I feel special about my 7 year old and my life."
Tuesday, February 17, 2009
Beneath Notice
I've gotten used to being naked in the gym locker room. I don't worry about shocking people with my breastlessness anymore. If it's convenient, I'll throw a towel over my right shoulder and let it hang casually over my scar. If I don't have a towel handy, or it is getting in the way...I don't worry about it anymore.
So when we went to Idaho Springs for a soak, I didn't even think or blink about being naked among strangers there.
The hot pools carved into the cave floor are sex segregated. I don't know what they do on the men's side, but on the women's side, we float naked and steaming under dark, dripping stone.
Unlike the gym, it's slow and calm in the caves. No one is in a hurry to get to yoga on time, or blow dry their hair before they have to be at work. We all just melt into the stone and wait for the water to work it's magic on us.
Sometimes we talk. To the friends that came with us. To women from elsewhere.
I had a nice conversation with a woman from Peru. She told me about her middle eastern husband, How they'd been married years ago and split. Now they were trying to work it out again. Cultural differences, she said, were the problem.
She asked about me, my life, my history. We talked about breast cancer and mastectomies. She hadn't even noticed mine. After I told her she said, "You know, they do really amazing things with reconstruction these days and your insurance will cover it."
Later, K said, "She just doesnt' get it, does she?"
"No," I agreed. But then I wondered what "it" is. What is she not getting? That I think I look okay? That I don't think I look so bad that I need to be stitched and sliced in order to look better? That a problem she didn't even notice until I pointed to it doesn't seem worth the trouble of fixing?
Later in the day, K. asked me if I feel good about my body...even thought I weigh more than I want to and am out of shape compared to how I was. I told her that I didn't feel great, but I didn't feel awful either. Mostly I'm just glad to have one that works. I also told her that since cancer, how I feel about my body seems sharply disconnected from how I feel about myself.
Thank god, because shortly after that a horribly unflattering photo of me showed up in the Daily Camera.
Once you decide surgery makes sense for changing the way you look, for instance, on your scarred and bony chest, where does that reasoning stop?
In that photo, I was far too pale ... with one squinting eye, crooked yellow smile and a double chin. Should I make an appointment for an artificial tan? corrective lenses? tooth bleaching? facial liposuction?
Or should I just relax and realize that, probably, no one even noticed.
So when we went to Idaho Springs for a soak, I didn't even think or blink about being naked among strangers there.
The hot pools carved into the cave floor are sex segregated. I don't know what they do on the men's side, but on the women's side, we float naked and steaming under dark, dripping stone.
Unlike the gym, it's slow and calm in the caves. No one is in a hurry to get to yoga on time, or blow dry their hair before they have to be at work. We all just melt into the stone and wait for the water to work it's magic on us.
Sometimes we talk. To the friends that came with us. To women from elsewhere.
I had a nice conversation with a woman from Peru. She told me about her middle eastern husband, How they'd been married years ago and split. Now they were trying to work it out again. Cultural differences, she said, were the problem.
She asked about me, my life, my history. We talked about breast cancer and mastectomies. She hadn't even noticed mine. After I told her she said, "You know, they do really amazing things with reconstruction these days and your insurance will cover it."
Later, K said, "She just doesnt' get it, does she?"
"No," I agreed. But then I wondered what "it" is. What is she not getting? That I think I look okay? That I don't think I look so bad that I need to be stitched and sliced in order to look better? That a problem she didn't even notice until I pointed to it doesn't seem worth the trouble of fixing?
Later in the day, K. asked me if I feel good about my body...even thought I weigh more than I want to and am out of shape compared to how I was. I told her that I didn't feel great, but I didn't feel awful either. Mostly I'm just glad to have one that works. I also told her that since cancer, how I feel about my body seems sharply disconnected from how I feel about myself.
Thank god, because shortly after that a horribly unflattering photo of me showed up in the Daily Camera.
Once you decide surgery makes sense for changing the way you look, for instance, on your scarred and bony chest, where does that reasoning stop?
In that photo, I was far too pale ... with one squinting eye, crooked yellow smile and a double chin. Should I make an appointment for an artificial tan? corrective lenses? tooth bleaching? facial liposuction?
Or should I just relax and realize that, probably, no one even noticed.
Face It
In the late 90's, while I was finishing up college, I had some health problems. For no discernible reason, my face began swelling up like a giant hive. It would puff up red and hot for a day or two. Over the following week, it would shrink back down to regular size. While it was shrinking, my skin turned hard. It acted like plastic that had been heated, expanded and then cooled into a solid shell. As the swelling began to subside, the skin that made up my hideously bloated face was suddenly too big. Being rigid, it couldn't easily contract back down to the size it had been before the swelling started. The surface of my face started to wrinkle and pucker and crack. My forehead, chin and cheeks all jostled for position on the shrinking surface that no longer boasted room enough for everybody. During this stage, my eyes looked as if they were surrounded by a plateful of pink scrambled eggs.
Whether it was growing or contracting, my faced looked pretty awful, as you can imagine. I didn't worry too much about how it looked, because it felt even worse. My plastic shell skin still had all the sensitivity that one's face usually has. The freezing, buckling and rippling process was incredibly painful. On the other hand, the swelling process didn't hurt at all. But it itched. It itched like my face was an anthill bustling with teeny-tiny, poisonous, bright red busy insects. It itched like the places under my face were sweating through a fuzzy scarf knitted from 100% wool, if I were allergic to wool. It itched like poison ivy and chigger bites. It itched like I was going mad.
While my face shrank in pain, I dreamed about cool fountains and rose petals. I set my jaw and waited for it to end. It was bad, but bearable.
While it swelled and itched, I dreamed about clawing my face off with sharpened fingernails, scrubbing it with sandpaper, shaving it with a carrot peeler. I sucked on ice. I sat on my hands. I prayed to stop being tortured.
My experience during this time is the reason why, if I am every playing one of those "what if" games, and the question is, "What if you had to chose between excruciating pain or intense itching?" I will always answer, "Pain, please!"
Hell might be hot. But worse than that, I'm sure it itches.
At first I blamed allergies. I followed the food plan my doctor suggested would help me identify the offender. I ate nothing for 3 days. When I was hungry, I drank water. On the fourth day, I had brown rice and spinach. The next day I added apple. The next, some plain chicken. Each day I added one new thing to my diet, and waited for a response from my body. Chocolate gave me a tiny pimple on my nose, but other than that, nothing seemed to affect me for good or bad.
I changed out all the chemicals in the house. Cleaning sprays, soaps, lotions, and perfumes all went in the garbage. Every soft surface got washed. Every hard surface got wiped down. Nothing helped.
A naturopath gave me ozone enhanced olive oil to massage into my skin. It smelled good but didn't help. I took a remedy made from honeybee stings. That was pretty exciting. It was the one thing I did that seemed to make any difference. It made my face swell up faster and fatter.
Desperate and defeated, I dropped out of school, quit my job, and flew to Florida. At my dad's house on the Withlacoochie river, I could hide out and rest. My stepmom drove me around to doctor's offices, looking for a cure.
Maybe I should look it up online, to see if the dermatology practice she took me to still exists. It would be nice to have some back up for my memory. You'll probably think I'm making this up, but I'm going to tell you anyway. I clearly remember sitting in the minivan with her, looking at the sign in their parking lot. There were four doctors that shared this practice. One of them had a normal name, Dr. Evans or something. The other three, I swear I am not making this up, were Dr. Boyles, Dr. Burns and Dr. Pimpleton. These dermatologists were all named after skin problems!
Despite the poetry of their practice, they could not help me. The one I saw asked me what I was using to wash my lumpy, crusty face. "I'm afraid to touch it with anything." I told him. "I just splash cool water on it." He rolled his eyes and gave me a sample bottle of liquid soap for sensitive skin. "Use this," he told me. I did. It gave me a rash.
In the end, the cure seemed to be rest. I stayed in Florida for a month, and did almost nothing. I sat on the third floor deck and looked out at the cypress swamp. I drank white wine and listened to Simon and Garfunkle. When I woke up in the morning too lazy to stand in the shower, I slid my body into the hot tub instead.
I didn't worry about school, or work, or money, or meals. I wore the same clothes every day. I let my hair get shaggy. I ate whatever my stepmom prepared. I read whatever books were in the house. I slept and slept and slept.
After a month, my skin was back to normal. Peachy, smooth and completely free of pain or itching, I looked and felt ready to get back to my life. I got a haircut, bought pretty new clothes, and delighted in being somewhat attractive when I wanted to be.
Healthy again, I was able to think about what it had been like to look like a monster. While I was still dealing with it, it didn't matter too me. I was immersed in the pain, tormented by the itching and consumed with the agony of not understanding what was happening to me. My physical appearence became ironically immaterial.
Back when I looked like my head was exploding, I had had a counseling session. I'd started to cry about my face and my well-meaning counselor had tried to sympathize with me. "I'm sure it is terrribly frightening and frustrating to look like this and not understand why," she said with her hand on my shoulder. I remember looking up in surprise. "I don't care what I LOOK like!" I whined, "I just want it to stop hurting!!!"
Why would I care about my appearance? I hardly even knew what I looked like any more. I had draped scarves and towels over all the mirrors in my house. I only left the house for doctors' appointments.
Except the day I had to go to campus and drop out of the honors program. It was a particularly bad day. I probably looked like a fresh loaf of sourdough bread, baked with a tomato paste topping. I couldn't even wear sunglasses. They wouldn't fit.
It was a big deal to get into this honors program. It was a big hassle to drop out of it. I had to meet some administrator in person and fill out paperwork. I had to have a good reason to quit, and documentation of the reason. I'd never met her before, and she didn't know what I looked like. I thought about warning her over the phone ahead of time, but I couldn't think of what to say.
"Just so you know, I have a skin condition that makes my face bubble and sweat like a fresh pizza."
It didn't seem like an auspicious way to lead in to this important meeting, which could wreck my GPA and even threaten my chances of graduating if it went awry.
Also, I didn't want to be melodramatic. Maybe I didn't look that bad anymore. After several weeks of isolation, I was loosing perpective.
When I got to her office, the door was closed. I knocked. "Come in!" Her bright voice invited me to open the door, so I did.
She was sitting at the desk, looking down at some papers. I took a step forward. She looked up at me. She screamed.
I'm not kidding. This grown-up, professional woman in the safety of her own office chair let out a holler like she was auditioning for a monster movie. I, of course, was the monster.
It didn't last long. Half a breath into it, she got a grip, gulped her jaw shut and tried to smile. I tried to smile back.
"I'm sorry." I felt bad about scaring her. "This is the reason I have to give up the program. I'm having problems with my face."
I didn't tell her about the various failed treatments and attempts to locate the cause of my problem. I didn't tell her about laying awake at night crying because I couldn't scratch my cheeks off. I didn't tell her about the nights I couldn't even cry because moving my face at all hurt so horribly and the salt water burned so bad. She didn't need to know any of that.
All she needed to do was look at me, and suddenly the paperwork that had seemed so daunting floated past me in a well-ordered stream. She signed everything that needed to be signed and approved everything that needed to be approved. She didn't need a doctor's note or a diagnosis. Just one look at me was enough to convince her that I really ought to drop out of honors, and probably out of school alltogether. I got excused just for being really super ugly.
It's this memory that comes up most often when I am trying to think of a situation where I would volunteer myself for corrective cosmetic surgery. If I made people scream when they saw me...I would let a surgeon fix me with her knife.
Whether it was growing or contracting, my faced looked pretty awful, as you can imagine. I didn't worry too much about how it looked, because it felt even worse. My plastic shell skin still had all the sensitivity that one's face usually has. The freezing, buckling and rippling process was incredibly painful. On the other hand, the swelling process didn't hurt at all. But it itched. It itched like my face was an anthill bustling with teeny-tiny, poisonous, bright red busy insects. It itched like the places under my face were sweating through a fuzzy scarf knitted from 100% wool, if I were allergic to wool. It itched like poison ivy and chigger bites. It itched like I was going mad.
While my face shrank in pain, I dreamed about cool fountains and rose petals. I set my jaw and waited for it to end. It was bad, but bearable.
While it swelled and itched, I dreamed about clawing my face off with sharpened fingernails, scrubbing it with sandpaper, shaving it with a carrot peeler. I sucked on ice. I sat on my hands. I prayed to stop being tortured.
My experience during this time is the reason why, if I am every playing one of those "what if" games, and the question is, "What if you had to chose between excruciating pain or intense itching?" I will always answer, "Pain, please!"
Hell might be hot. But worse than that, I'm sure it itches.
At first I blamed allergies. I followed the food plan my doctor suggested would help me identify the offender. I ate nothing for 3 days. When I was hungry, I drank water. On the fourth day, I had brown rice and spinach. The next day I added apple. The next, some plain chicken. Each day I added one new thing to my diet, and waited for a response from my body. Chocolate gave me a tiny pimple on my nose, but other than that, nothing seemed to affect me for good or bad.
I changed out all the chemicals in the house. Cleaning sprays, soaps, lotions, and perfumes all went in the garbage. Every soft surface got washed. Every hard surface got wiped down. Nothing helped.
A naturopath gave me ozone enhanced olive oil to massage into my skin. It smelled good but didn't help. I took a remedy made from honeybee stings. That was pretty exciting. It was the one thing I did that seemed to make any difference. It made my face swell up faster and fatter.
Desperate and defeated, I dropped out of school, quit my job, and flew to Florida. At my dad's house on the Withlacoochie river, I could hide out and rest. My stepmom drove me around to doctor's offices, looking for a cure.
Maybe I should look it up online, to see if the dermatology practice she took me to still exists. It would be nice to have some back up for my memory. You'll probably think I'm making this up, but I'm going to tell you anyway. I clearly remember sitting in the minivan with her, looking at the sign in their parking lot. There were four doctors that shared this practice. One of them had a normal name, Dr. Evans or something. The other three, I swear I am not making this up, were Dr. Boyles, Dr. Burns and Dr. Pimpleton. These dermatologists were all named after skin problems!
Despite the poetry of their practice, they could not help me. The one I saw asked me what I was using to wash my lumpy, crusty face. "I'm afraid to touch it with anything." I told him. "I just splash cool water on it." He rolled his eyes and gave me a sample bottle of liquid soap for sensitive skin. "Use this," he told me. I did. It gave me a rash.
In the end, the cure seemed to be rest. I stayed in Florida for a month, and did almost nothing. I sat on the third floor deck and looked out at the cypress swamp. I drank white wine and listened to Simon and Garfunkle. When I woke up in the morning too lazy to stand in the shower, I slid my body into the hot tub instead.
I didn't worry about school, or work, or money, or meals. I wore the same clothes every day. I let my hair get shaggy. I ate whatever my stepmom prepared. I read whatever books were in the house. I slept and slept and slept.
After a month, my skin was back to normal. Peachy, smooth and completely free of pain or itching, I looked and felt ready to get back to my life. I got a haircut, bought pretty new clothes, and delighted in being somewhat attractive when I wanted to be.
Healthy again, I was able to think about what it had been like to look like a monster. While I was still dealing with it, it didn't matter too me. I was immersed in the pain, tormented by the itching and consumed with the agony of not understanding what was happening to me. My physical appearence became ironically immaterial.
Back when I looked like my head was exploding, I had had a counseling session. I'd started to cry about my face and my well-meaning counselor had tried to sympathize with me. "I'm sure it is terrribly frightening and frustrating to look like this and not understand why," she said with her hand on my shoulder. I remember looking up in surprise. "I don't care what I LOOK like!" I whined, "I just want it to stop hurting!!!"
Why would I care about my appearance? I hardly even knew what I looked like any more. I had draped scarves and towels over all the mirrors in my house. I only left the house for doctors' appointments.
Except the day I had to go to campus and drop out of the honors program. It was a particularly bad day. I probably looked like a fresh loaf of sourdough bread, baked with a tomato paste topping. I couldn't even wear sunglasses. They wouldn't fit.
It was a big deal to get into this honors program. It was a big hassle to drop out of it. I had to meet some administrator in person and fill out paperwork. I had to have a good reason to quit, and documentation of the reason. I'd never met her before, and she didn't know what I looked like. I thought about warning her over the phone ahead of time, but I couldn't think of what to say.
"Just so you know, I have a skin condition that makes my face bubble and sweat like a fresh pizza."
It didn't seem like an auspicious way to lead in to this important meeting, which could wreck my GPA and even threaten my chances of graduating if it went awry.
Also, I didn't want to be melodramatic. Maybe I didn't look that bad anymore. After several weeks of isolation, I was loosing perpective.
When I got to her office, the door was closed. I knocked. "Come in!" Her bright voice invited me to open the door, so I did.
She was sitting at the desk, looking down at some papers. I took a step forward. She looked up at me. She screamed.
I'm not kidding. This grown-up, professional woman in the safety of her own office chair let out a holler like she was auditioning for a monster movie. I, of course, was the monster.
It didn't last long. Half a breath into it, she got a grip, gulped her jaw shut and tried to smile. I tried to smile back.
"I'm sorry." I felt bad about scaring her. "This is the reason I have to give up the program. I'm having problems with my face."
I didn't tell her about the various failed treatments and attempts to locate the cause of my problem. I didn't tell her about laying awake at night crying because I couldn't scratch my cheeks off. I didn't tell her about the nights I couldn't even cry because moving my face at all hurt so horribly and the salt water burned so bad. She didn't need to know any of that.
All she needed to do was look at me, and suddenly the paperwork that had seemed so daunting floated past me in a well-ordered stream. She signed everything that needed to be signed and approved everything that needed to be approved. She didn't need a doctor's note or a diagnosis. Just one look at me was enough to convince her that I really ought to drop out of honors, and probably out of school alltogether. I got excused just for being really super ugly.
It's this memory that comes up most often when I am trying to think of a situation where I would volunteer myself for corrective cosmetic surgery. If I made people scream when they saw me...I would let a surgeon fix me with her knife.
Thursday, February 12, 2009
Well Known, Well Dressed
I felt like a celebrity this morning.
I am meeting with my old friend and professor, Joanne (who had a double mastectomy a few years ago) and a reporter from our local paper this afternoon. The reporter is interviewing me and J re: our choice to forgoe reconstructive surgery.) Her interest in the topic seems to be partly sparked by an upcoming screening of the facetiously titled film, "Absolutely Safe." It's a documentary about breast implants. It's playing here in Boulder on the 26th of this month.
I'm spending the morning doing a little research about the whole issue, so I can sound smarter when I talk to her. I'm really trying to find stats on how many women actually get reconstruction...no luck so far. But I did find this treat:
http://www.blogher.com/after-mastectomy-breast-reconstruction-beauty-and-profit
It's a well written and researched blog article about an Janurary 09 feature in the New York Times. This article ends with quote from me!!! I can't tell you how surprised I was to be reading this article, and taking notes for my upcoming interview...and then seeing MY OWN WORDS. I'm famous! (in a teeny-tiny little cirlcle of my mind.)
Also, among the many many many websites I've visited this morning, looking for hard cold facts about reconstructive surgery, I discovered this treasure:
http://thesongbirdbranch.blogspot.com/
I've been thinking alot about designing some tops that would complement, rather than obscure, my new figure. Thank goodness, some people do more than just think about it. The Song Bird Branch author has some great photos of clothes she's found and/or altered to suit her right-side mastectomy (same as mine.)
Another woman has started a whole new clothing line on this theme!
http://rebel1in8.com/rhea.html (This website also boasts and incredible "resource" page.)
I can't wait to tell you how the interview went!
I am meeting with my old friend and professor, Joanne (who had a double mastectomy a few years ago) and a reporter from our local paper this afternoon. The reporter is interviewing me and J re: our choice to forgoe reconstructive surgery.) Her interest in the topic seems to be partly sparked by an upcoming screening of the facetiously titled film, "Absolutely Safe." It's a documentary about breast implants. It's playing here in Boulder on the 26th of this month.
I'm spending the morning doing a little research about the whole issue, so I can sound smarter when I talk to her. I'm really trying to find stats on how many women actually get reconstruction...no luck so far. But I did find this treat:
http://www.blogher.com/after-mastectomy-breast-reconstruction-beauty-and-profit
It's a well written and researched blog article about an Janurary 09 feature in the New York Times. This article ends with quote from me!!! I can't tell you how surprised I was to be reading this article, and taking notes for my upcoming interview...and then seeing MY OWN WORDS. I'm famous! (in a teeny-tiny little cirlcle of my mind.)
Also, among the many many many websites I've visited this morning, looking for hard cold facts about reconstructive surgery, I discovered this treasure:
http://thesongbirdbranch.blogspot.com/
I've been thinking alot about designing some tops that would complement, rather than obscure, my new figure. Thank goodness, some people do more than just think about it. The Song Bird Branch author has some great photos of clothes she's found and/or altered to suit her right-side mastectomy (same as mine.)
Another woman has started a whole new clothing line on this theme!
http://rebel1in8.com/rhea.html (This website also boasts and incredible "resource" page.)
I can't wait to tell you how the interview went!
Wednesday, February 4, 2009
Pucker Up!
I've been unhappy with my chest ever since we took the bandages off. Initially, Sheer horror kept me from being able to look directly at it. Until the pain subsided, viewing my naked chest felt like a traumatic incident. With the pain signals flooding my brain every minute, my eyes weren't able to open their own channel. All the information they fed to my brain ended up twisted with the bias of my big loud OUCH. My afferent nerves told me I was in pain. My eyes told me I'd been mauled.
After a week of pain killers and mid-day naps I started to be able to look at my chest without wincing or covering my face with my hand. When it finally stopped hurting so much, I could see it for what it was; healthy, healing, cancer-free skin.
I should have been thrilled, right? I should have gotten on my knees and thanked my excellent surgeon for saving my life.
I did feel grateful to my surgeon. She had been absolutely wondeful throughout my month of probes and procedures. She had explained every outcome and probablitity to me patiently and thoroughly. She and her staff had made Mom and me feel loved and supported. I am still deeply grateful to Dr. Rocco for all her expertise, skill and most of all, compassion.
But I've been unhappy with the result of her work.
Supposedly, after my beautiful, talented and beloved surgeon finished chopping and stitching my torso, she came out to visit my mom in the waiting area. This was really sweet of her to do. She told Mom that the surgery had gone very well. She also said how pleased she was that she'd been able to save a little extra skin and tissue, and that this would make it easier to have reconstruction down the road. This was really sweet of her too, except that I didn't plan on having a boob built later.
I didn't want any more surgery. The chest that she was making for me was going to be my forever-chest. Maybe we should have talked about this more. When I first told her I didn't want any reconstruction, she'd seemed shocked. The conversation only moved forward after she shrugged off her dazed look to suggest I could always have it done later. If I'd known there was a difference between how she'd perform the surgery for a future reconstruction, and how she'd perform the surgery for a final result, I would have pressed the issue. I would have insisted she understand how serious I was about not having additional surgery. I would have made sure she planned on giving me the best looking chest she could manage, since I would be wearing it for the rest of my life.
But I didn't know.
One survivor at my support group said yesterday, "No matter how many questions you ask, there's always one more question." You're always going to wish you had asked it.
Because I didn't know to ask whether or not she would leave extra skin and tissue, I now have a flabby, poochy, pouchy, puffy, wrinkly place where my breast used to be. Without my prosthesis, I don't look like a mastectomy patient. I look like I have a deformed, deflated breast tucked up under my bra.
I ran into an old friend at a dance a few weeks ago. I pulled down my sweater to show her my chest. "So that's what a lumpectomy looks like," she mused. "No!" I said, "They took my whole breast off." She looked puzzled, and I understand why. If my whole breast is gone, then what's that puffy fatty area?
Friends who've seem me topless, point to the gathered, pointed, ridgy place at far left edge of my incision and call it "the place where your nipple used to be." This drives me nuts. The wrinkly gathered skin is almost in the very center of my chest. My nipple wasn't any where near there. My nipple was at the front of my breast, which is now gone. Just because my skin is textured now doesn't mean it has anything to do with my dear departed nipple!!!
There's no real reason for me to get excited and snarky about it, but I do anyway.
Dr. R, angel that she really and truly is, said she'd be happy to clean it up for me. A little corrective cosmetic surgery wouldn't take long, would be perfectly safe, and would probably be totally covered under my insurance. I've been considering it, but I really don't want more surgery. That was the whole point of not having reconstruction in the first place; no unecessary surgery performed just to make me feel better about how I look.
After a week of pain killers and mid-day naps I started to be able to look at my chest without wincing or covering my face with my hand. When it finally stopped hurting so much, I could see it for what it was; healthy, healing, cancer-free skin.
I should have been thrilled, right? I should have gotten on my knees and thanked my excellent surgeon for saving my life.
I did feel grateful to my surgeon. She had been absolutely wondeful throughout my month of probes and procedures. She had explained every outcome and probablitity to me patiently and thoroughly. She and her staff had made Mom and me feel loved and supported. I am still deeply grateful to Dr. Rocco for all her expertise, skill and most of all, compassion.
But I've been unhappy with the result of her work.
Supposedly, after my beautiful, talented and beloved surgeon finished chopping and stitching my torso, she came out to visit my mom in the waiting area. This was really sweet of her to do. She told Mom that the surgery had gone very well. She also said how pleased she was that she'd been able to save a little extra skin and tissue, and that this would make it easier to have reconstruction down the road. This was really sweet of her too, except that I didn't plan on having a boob built later.
I didn't want any more surgery. The chest that she was making for me was going to be my forever-chest. Maybe we should have talked about this more. When I first told her I didn't want any reconstruction, she'd seemed shocked. The conversation only moved forward after she shrugged off her dazed look to suggest I could always have it done later. If I'd known there was a difference between how she'd perform the surgery for a future reconstruction, and how she'd perform the surgery for a final result, I would have pressed the issue. I would have insisted she understand how serious I was about not having additional surgery. I would have made sure she planned on giving me the best looking chest she could manage, since I would be wearing it for the rest of my life.
But I didn't know.
One survivor at my support group said yesterday, "No matter how many questions you ask, there's always one more question." You're always going to wish you had asked it.
Because I didn't know to ask whether or not she would leave extra skin and tissue, I now have a flabby, poochy, pouchy, puffy, wrinkly place where my breast used to be. Without my prosthesis, I don't look like a mastectomy patient. I look like I have a deformed, deflated breast tucked up under my bra.
I ran into an old friend at a dance a few weeks ago. I pulled down my sweater to show her my chest. "So that's what a lumpectomy looks like," she mused. "No!" I said, "They took my whole breast off." She looked puzzled, and I understand why. If my whole breast is gone, then what's that puffy fatty area?
Friends who've seem me topless, point to the gathered, pointed, ridgy place at far left edge of my incision and call it "the place where your nipple used to be." This drives me nuts. The wrinkly gathered skin is almost in the very center of my chest. My nipple wasn't any where near there. My nipple was at the front of my breast, which is now gone. Just because my skin is textured now doesn't mean it has anything to do with my dear departed nipple!!!
There's no real reason for me to get excited and snarky about it, but I do anyway.
Dr. R, angel that she really and truly is, said she'd be happy to clean it up for me. A little corrective cosmetic surgery wouldn't take long, would be perfectly safe, and would probably be totally covered under my insurance. I've been considering it, but I really don't want more surgery. That was the whole point of not having reconstruction in the first place; no unecessary surgery performed just to make me feel better about how I look.
Tuesday, February 3, 2009
Grandpa and Bras
Before I got breasts, I tried to imagine what they would look like when they came. Would they sprout all at once while I was sleeping? That seemed to be what had happened with some of the girls at school. I thought maybe my skin would stretch out first, making a wrinkly pouch that would gradually fill as my breasts grew inside them…like a balloon being blown up.
I wish I remembered more about my early breasts. What did they look like? What size were they? How long did it take to reach my adult cup size of Bplus-to-C? I really don’t know. My only two breast-related memories from my teen years revolve around my grandfather.
I remember hugging him at the bottom of the stairwell in our house on Eureka Lane. He and Grandma had just arrived. I must have already hugged her, because she was standing behind me with Mom. Grandpa and I put our arms around each other, happy to be together, and then he pulled back suddenly. “Hey!” He announced to our gathered company, “You’re wearing a bra!”
I don’t know how old I was, maybe 14. It must have been my first bra. I didn’t say anything or even look at him. I just walked up the stairs, straight into my room. On my way, I could hear my mother and Grandmother do their much rehearsed harmonic expression of simultaneous exasperation.
“Daddy!”
“Dave!”
A few years later, I had grown accustomed to wearing bras, but not to paying for them. They were so expensive! Beautiful lingerie seemed like one more thing I had to learn to do without. Growing up, I never felt like I had the right clothes or shoes or haircuts. Of course, Mom tried to get us all the things we wanted. But her tight budget and abundant good taste usually prevented it, at least until December.
Every year, as Christmas got close, my grandparents would give us money to go shopping with. My sister and I would buy presents for ourselves, wrap them up, and open them after our the candle-light supper. This way, we got what we wanted. We wouldn’t be surprised of course, but everyone else would be.
The year I was 16, I spend my money at Victoria’s Secret. So delighted with my purchases, I arranged the velvet, lace and silk brazzierres perfectly on a bed of pink tissue paper. To me, it looked like a luxurious work of art, a bouquet of rare flowers, an all-you-can eat fashion buffet. To my grandfather, I’m sure it looked like pure sex. As a self-centered teen, I didn’t think about it, but he came from generation where the word “unmentionables” wasn’t just a campy way to say “panties.” They really meant it!
When I opened my gift at our family gathering, Grandpa took one look at my careful arrangement and blurted out, “Who gave you that?!” His eyebrows were halfway up to his hair-plugs. Grinning, I cheerfully informed him, “You did!”
This time, he was the one who didn’t say anything on the way to his room.
I wish I remembered more about my early breasts. What did they look like? What size were they? How long did it take to reach my adult cup size of Bplus-to-C? I really don’t know. My only two breast-related memories from my teen years revolve around my grandfather.
I remember hugging him at the bottom of the stairwell in our house on Eureka Lane. He and Grandma had just arrived. I must have already hugged her, because she was standing behind me with Mom. Grandpa and I put our arms around each other, happy to be together, and then he pulled back suddenly. “Hey!” He announced to our gathered company, “You’re wearing a bra!”
I don’t know how old I was, maybe 14. It must have been my first bra. I didn’t say anything or even look at him. I just walked up the stairs, straight into my room. On my way, I could hear my mother and Grandmother do their much rehearsed harmonic expression of simultaneous exasperation.
“Daddy!”
“Dave!”
A few years later, I had grown accustomed to wearing bras, but not to paying for them. They were so expensive! Beautiful lingerie seemed like one more thing I had to learn to do without. Growing up, I never felt like I had the right clothes or shoes or haircuts. Of course, Mom tried to get us all the things we wanted. But her tight budget and abundant good taste usually prevented it, at least until December.
Every year, as Christmas got close, my grandparents would give us money to go shopping with. My sister and I would buy presents for ourselves, wrap them up, and open them after our the candle-light supper. This way, we got what we wanted. We wouldn’t be surprised of course, but everyone else would be.
The year I was 16, I spend my money at Victoria’s Secret. So delighted with my purchases, I arranged the velvet, lace and silk brazzierres perfectly on a bed of pink tissue paper. To me, it looked like a luxurious work of art, a bouquet of rare flowers, an all-you-can eat fashion buffet. To my grandfather, I’m sure it looked like pure sex. As a self-centered teen, I didn’t think about it, but he came from generation where the word “unmentionables” wasn’t just a campy way to say “panties.” They really meant it!
When I opened my gift at our family gathering, Grandpa took one look at my careful arrangement and blurted out, “Who gave you that?!” His eyebrows were halfway up to his hair-plugs. Grinning, I cheerfully informed him, “You did!”
This time, he was the one who didn’t say anything on the way to his room.
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