K and I are checking out gyms. It's part of our plan for a smart, healthy life together. Of course, we like the most expensive one best. It's close to the house, the yoga teacher is superb, and some friends of ours already belong there. Best of all, there is a hot tub, steam room and dry sauna right there in the women's locker room. We don't have to put on our suits and mingle with men when we want a soak after basketball.
Alice Waters once wrote (if I remember correctly) "I'm not a sepratist. Except occasionally, for my health." I feel the same way. I love the nudity of the locker room; the freedom to stroll from shower to tub wearing nothing but flip-flops. I love being surrounded by naked women of assorted shapes and sizes. Few of them, even the really toned ones, resemble the sex and sales goddesses that permeate our media culture. None of them seem to notice or mind how widely they all differ from the projected "norm" of Heidi Klums and Nicole Kidmans.
I'm sure many of them do mind. Most of them probably have body image issues and eating disorders that plague their days and dreams. But, I can't tell by looking at them. From my seat in the whirlpool, it looks like an organic garden of healthy women's bodies. The gardener has obviously read about the ills and dangers of monoculture, and instead has planted heirloom varieties, betting on the strength and abundance that comes with diversity.
In an environment like this, I could shamelessly display the recent alteration to my birthday suit. But I don't.
The first time, I wrapped a towel around myself.
I remember learning to do this. We were at the Waynesboro swimming pool. Mom showed me how to pull the long edge of a beach towel tight around my waist until all that was left was a handful of terry cloth at the corner. Under her direction, I gave the piece in my hand a twist, and stuffed it into what was now the waist of my instant skirt!
Years later, I was still wrapping and twisting beach towels around my waist, until the day I saw this girl Anna at the pool. She wasn't a particular friend of mine, but she was the daughter of the man who did my mom's taxes...so we stopped and said, "hi."
I could not take my eyes off her hips. Anna was a talkative, popular girl at school. I'm sure my apparent fascination with her damp and scantily clad body boosted my own reputation as a weirdo and freak. But, I wasn't looking at her. I was looking at her beach towel.
Her cover-up arrangement completely side-stepped the laws of nature, physics and pool-side fashion, as I understood them at the time. Alone in my bedroom, I tried to copy her style.
First I wrapped the entire towel around my waist, all the way to the corner. I didn't twist and tuck like I'd been doing since early childhood. Instead, I held the entire thing flat against my body, and then folded the whole thing down, creating a kind of waist-band that held the towel in place. I was impressed and amazed. It had never occurred to me that there was more than one way to wrap a towel around yourself and hold it there without pins or clips.
I tried to wear my towel flat-folded like this the next few times I went to the pool. Finally, I had found a way to dress like the cool kids, without the money. But I couldn't break my old habit. To this day, I am still a twist-and-tucker at heart. But my adjusted anatomy may force a chance that peer envy couldn't.
In the women's locker room at the fancy health club, I try to twist and tuck a towel around my chest. I'm long and the towels are short, only barely managing to cover my ass. It's okay. It's not my ass I feel anxious about.
I've grown accustomed to the way my scar and single breast look next to each other. And K., in a surreal moment of what I think was honesty actually said to me the other day, "I like the way you look!" I was naked from the waist up at the time, so I am apparently not the only one in the house who's gotten used to my ammended figure.
But the women at the gym haven't had a chance to get accustomed to me. I don't want to shock them. I don't want to startle them. I'm happy to open up my blouse and show my scar to anyone who expresses the slightest interest, but I do feel like people deserve a little warning.
So I don't mind that the towels are too short to cover my ass, they cover my chest. For a few minutes, at least.
The twist-and-tuck method, which has served me so faithfully these past 3 decades, won't hold anymore. I used to do the tucking part right into my cleavage. But, I don't have cleavage anymore. I tried to tuck on the flat part where my right breast used to be, but even 6 months after my surgery, I'm too sensitive. It hurts to tuck it there. So I tuck under my arm, but the angle is wrong or something, and the towel won't stay.
I tried the flat-fold technique too. But that shortens the towel by a good 3 inches. I look silly and strange walking around like this. My towel stops exactly where modesty, and R rated film protocols, dictate coverage should begin.
So I carry the towel and cover up my chest with my hand, first the right, and then the left. I start with the right, holding my scar under cover. After all, that is the problem side. But I feel ridiculous holding a hand against my flat chest, while my free breast bounces happily in the bright light. So I switch, and hold my other side instead. My scar doesn't really look that bad by itself. It's only the juxtaposition with my healthy breast and nipple that makes my chest seem shocking. Without the comparison to give the viewer context, I think I look okay. It's just a flat area of my body, with a scar in the middle. Who cares? No one sensible will be appalled or affronted by this.
It's a good technique, until I start to feel self-conscious about grabbing my own breast. No one else is doing it. I start to feel inappropriate and vaguely sexual, like those teen age boys who cup their testicles in public. So I put both hands on my chest, covering both sides. I do this until I need a free hand for something for opening a door or drinking water. Then the switch-off routine starts all over again.
Thursday, January 29, 2009
Tuesday, January 27, 2009
New Blog
I love writing in this blog, and plan to keep doing it as long as I have anything to say that relates to having or surviving cancer. That will probably be a long while. But, cancer isn't all I want to write about.
I want to write about food and books and politics. I want to write about outdoor sports and community events. I want to write about art and music and people. But I don't want to write about those things here.
So I am starting a new blog. On my new blog, I intend to write about my own adventures. I also plan to research the thing I am writing about, so I can place my own observations, insights and experiences into a larger context. Looking to reflect this balance between real life and reference materials in the title, I am naming it "The Adventures of Library Girl."
I kind of stole this title from a speech I did at Toastmasters once, called "Library Girl to the Rescue." It was a self-glamorizing account of the first day I went sailing.
To entertain you, and myself, I'm posting this as the first story on my new blog. You can read part one by e-travelling to http://theadventuresoflibrarygirl.blogspot.com/
I've only got part one written so far. I'll try to get part two up by the end next week, at the latest. In the meantime I will continue to post my thoughts, feelings, and activities relating to cancer on this blog. My mental and emotional health seems to depend upon it.
As always, I appreciate that you read, and comment on, what I've written. I like to think I'd still be writing this, even if no one was reading it. But, that's probably not true.
So consider this...if you have ever read or commented on this blog, you've helped me to keep writing. And, if anything I write ever helps another cancer survivor or someone close to them...you have helped them too, because I wouldn't have done it without you.
I want to write about food and books and politics. I want to write about outdoor sports and community events. I want to write about art and music and people. But I don't want to write about those things here.
So I am starting a new blog. On my new blog, I intend to write about my own adventures. I also plan to research the thing I am writing about, so I can place my own observations, insights and experiences into a larger context. Looking to reflect this balance between real life and reference materials in the title, I am naming it "The Adventures of Library Girl."
I kind of stole this title from a speech I did at Toastmasters once, called "Library Girl to the Rescue." It was a self-glamorizing account of the first day I went sailing.
To entertain you, and myself, I'm posting this as the first story on my new blog. You can read part one by e-travelling to http://theadventuresoflibrarygirl.blogspot.com/
I've only got part one written so far. I'll try to get part two up by the end next week, at the latest. In the meantime I will continue to post my thoughts, feelings, and activities relating to cancer on this blog. My mental and emotional health seems to depend upon it.
As always, I appreciate that you read, and comment on, what I've written. I like to think I'd still be writing this, even if no one was reading it. But, that's probably not true.
So consider this...if you have ever read or commented on this blog, you've helped me to keep writing. And, if anything I write ever helps another cancer survivor or someone close to them...you have helped them too, because I wouldn't have done it without you.
Monday, January 26, 2009
Twist of the Wrist
I used to be in a politically radical performance group. For one skit, several of us dressed in suits and pretended to be greedy, sexist businessmen. My friend N. had a line where she was talking about big boobs. Every time she said the line, she cupped her palms inward, as if fondling huge imaginary breasts of her own. We went through several rehearsals, without anyone in our all-female troupe catching on to the inconsistency of this gesture. It took a visitor, I’m pretty sure it was a guy, to point out that no male chauvinist would pantomime a pair of tits as being his own. From that moment on, N twisted her palms away from herself and grabbed invisible breasts belonging to someone else. It really improved the piece, and made her persona believable.
I think about this theatre bit whenever I read about reconstructed breasts “feeling” natural. I know they’re not able to re-attach the severed nerves. I can’t imagine the transferred flesh they stitch on as a nipple is able to communicate anything but the vaguest pleasure or pain back to the brain. Doesn’t it feel like a big numb lump? I don’t know. I should ask someone.
But I strongly suspect that when patients or their doctors refer to reconstructed breasts as “feeling” natural, they are talking about the way they feel in the hand of someone not connected to them. I haven’t read anything that talks about how it feels to the woman wearing the breast.
This is what I would care about if I was considering the surgery. How will it look to me, and how will it feel…to ME. I mean, why does it matter what it feels like to another person?
I understand and agree that the full, warm, squishy-ness of a woman’s breast makes a friendly handful. But, come on. The really cool thing, the thing that matters, about touching a woman’s breast is how it makes her feel, right? It makes her feel good. It makes her excited. It makes her want you to touch her more, and in other places. The way the nipple shifts and changes is confirmation that you are successfully communicating your desires, and making her feel them too. You’re connected. You’re contagious. You’re hot, hot, hot.
It seems to me that all the people, both doctors and paitents, who write and talk about re-contructed breasts feeling "natural" have got their wrists twisted the wrong way. Only by turning them around are we going to get the right answer, because the question is not, "How do these breasts feel to a hand?" The question is, "How do they feel to a person?"
I think about this theatre bit whenever I read about reconstructed breasts “feeling” natural. I know they’re not able to re-attach the severed nerves. I can’t imagine the transferred flesh they stitch on as a nipple is able to communicate anything but the vaguest pleasure or pain back to the brain. Doesn’t it feel like a big numb lump? I don’t know. I should ask someone.
But I strongly suspect that when patients or their doctors refer to reconstructed breasts as “feeling” natural, they are talking about the way they feel in the hand of someone not connected to them. I haven’t read anything that talks about how it feels to the woman wearing the breast.
This is what I would care about if I was considering the surgery. How will it look to me, and how will it feel…to ME. I mean, why does it matter what it feels like to another person?
I understand and agree that the full, warm, squishy-ness of a woman’s breast makes a friendly handful. But, come on. The really cool thing, the thing that matters, about touching a woman’s breast is how it makes her feel, right? It makes her feel good. It makes her excited. It makes her want you to touch her more, and in other places. The way the nipple shifts and changes is confirmation that you are successfully communicating your desires, and making her feel them too. You’re connected. You’re contagious. You’re hot, hot, hot.
It seems to me that all the people, both doctors and paitents, who write and talk about re-contructed breasts feeling "natural" have got their wrists twisted the wrong way. Only by turning them around are we going to get the right answer, because the question is not, "How do these breasts feel to a hand?" The question is, "How do they feel to a person?"
Saturday, January 24, 2009
Wordle
My friend C. forwarded me this very cool website. It will take a document or a group of words and create a sort of collage based on which words come up most frequently.
The address is http://www.wordle.net/e.net/
This is the image she created by feeding this blog address into the site.
The address is http://www.wordle.net/e.net/
This is the image she created by feeding this blog address into the site.
Sorry the quality is so bad. I had to change it from a pdf to a jpg. I probably didn't do it right.
Friday, January 23, 2009
A Striking Assemblance
You know that thing that happens when people spend a lot of time together and they start acting and looking like each other?
It's happening in our house.
Phyllis is starting to dress like K.
Thursday, January 22, 2009
Apologizing in the Bathroom
I don’t know how to describe the feeling I have when I look in to the mirror at bedtime. My eyes tear up sometimes and the words in my head are “I’m sorry.”
Who am I apologizing too? K. I want to bring a perfect body to bed. Barring that, I’d like at least a decent one, with all the usual working parts.
I stand naked in the bathroom after my shower, or before brushing my teeth. Dripping or dry I look the same. Lopsided and scarred. Not pretty. Not sexy. Not right.
“I’m sorry.”
I don’t want to feel this way, apologetic. I don’t want to have these words in my head. I don’t want to come to bed with tears in my eyes. I want to give my lover the best of everything I’ve got. If I haven’t got two perfect breasts to bring, then I’d like to bring the funny looking one I’ve got and let her call it perfect, like she does. And I’d like to let her call my scarred, misshapen, flabby chest flesh on the other side perfect, like she does. I’d like to watch that word, “perfect,” hop from her mouth onto my skin and let it be true. I’d like to have the confidence and boldness of a woman in an intact body. I’d like to be bright and beam. Shameless.
I manage it sometimes. I can put out the light, or put on a shirt, and my apologies fall away into the fabric, into the night. K calls me the most beautiful woman in the world and whether or not it’s so, I feel like all the good things that blessing would bring are true for me with her.
But sometimes cotton isn’t enough, and neither is silk. I’m broken and partly missing. Even the total shroud of a moonless midnight sky painted deep with star-dampening clouds doesn’t make a strong enough shield. I can’t hide from my lessoned, lessened self. What have I learned? What have I lost? I crumble and cry.
Poor K. It must be bad enough to have a lover whose body lost a battle to win a war. Why should she have to deal with my trembling needy heart as well?
If I'd had reconstructive surgery, would it take all these feelings away?
If I'd had reconstructive surgery, would I be all healed up by now?
If I'd had reconstructive surgery, would I believe her when she says I'm the most beautiful woman in the world?
Maybe.
Maybe I should just go ahead and believe her now.
Who am I apologizing too? K. I want to bring a perfect body to bed. Barring that, I’d like at least a decent one, with all the usual working parts.
I stand naked in the bathroom after my shower, or before brushing my teeth. Dripping or dry I look the same. Lopsided and scarred. Not pretty. Not sexy. Not right.
“I’m sorry.”
I don’t want to feel this way, apologetic. I don’t want to have these words in my head. I don’t want to come to bed with tears in my eyes. I want to give my lover the best of everything I’ve got. If I haven’t got two perfect breasts to bring, then I’d like to bring the funny looking one I’ve got and let her call it perfect, like she does. And I’d like to let her call my scarred, misshapen, flabby chest flesh on the other side perfect, like she does. I’d like to watch that word, “perfect,” hop from her mouth onto my skin and let it be true. I’d like to have the confidence and boldness of a woman in an intact body. I’d like to be bright and beam. Shameless.
I manage it sometimes. I can put out the light, or put on a shirt, and my apologies fall away into the fabric, into the night. K calls me the most beautiful woman in the world and whether or not it’s so, I feel like all the good things that blessing would bring are true for me with her.
But sometimes cotton isn’t enough, and neither is silk. I’m broken and partly missing. Even the total shroud of a moonless midnight sky painted deep with star-dampening clouds doesn’t make a strong enough shield. I can’t hide from my lessoned, lessened self. What have I learned? What have I lost? I crumble and cry.
Poor K. It must be bad enough to have a lover whose body lost a battle to win a war. Why should she have to deal with my trembling needy heart as well?
If I'd had reconstructive surgery, would it take all these feelings away?
If I'd had reconstructive surgery, would I be all healed up by now?
If I'd had reconstructive surgery, would I believe her when she says I'm the most beautiful woman in the world?
Maybe.
Maybe I should just go ahead and believe her now.
Thursday, January 15, 2009
Live from Colorado
I had a short talk the other day with another breast cancer survivor. Like me, she had a mastectomy. Unlike me, she opted to get reconstruction. So, she has a different perspective than I do. I liked talking to her. I wish I'd had more time to ask her about why she chose the procedures she did, and how she feels about them now. But, even in our few minutes of candid discussion, I gleaned some interesting tidbits.
1. She chose to have the spacer plus implant surgery instead of the body-salad surgery. I didn't get to ask why she chose one over the other.
2. She's completed the surgery, with the nipple added and everything. This was interesting to me. I haven't had the chance to talk to a lot of other surviviors yet, but two of the stories I've heard were from women who didn't even get the nipples attached. They had the bulk of their breasts rebuilt, but by the time they were healed up enough to get their nipples added they felt like they'd already had enough surgery and having nipples wasn't really worth the effort, pain, risk and expense of going under the knife again. She obviously didn't feel this way.
3. Not only did she have the removed breast replaced, she had it made a size larger than the original one. To go along with that, she had an implant placed in her healthy breast, so that she would have a matched set. I think if I'd done reconstruction, I might have gone up a size too. Surely, after going through the agony of cancer, one deserves the compensation of a new "dream rack," or you could call it a "booby prize!"
4. I found this next bit incredibly interesting. She called the healthy breast, the one that didn't have cancer in it and now has an implant, she called this her "live" breast. She didn't refer to her other, reconstructed breast in the same context, so I don't know what she calls that one. But I can't help wonder, if one is "live" what is the other one?
5. The live breast continues to grow and shrink as she gains or loses weight. The other one doesn't. Here it is, the middle of winter in a cold climate and the holidays just ended. Most of us are carrying a few extra pounds and I guess she is too. Her "live" breast was noticably larger than the other one. I wondered how she felt about that. After all her surgery and healing and trying for a dream rack and everything, she still ends up with a lopsided bosom. Unfortunately, I didn't feel comfortable asking in the limited time we had together.
6. When I told her I hadn't done the reconstruction and didn't plan to, she replied that she probably wouldn't have done it either if she'd been older when it happened. I don't know her age, but my guess is that she's at least a decade older than me.
I've tried to be completely truthful, and respectful in reporting what I learned from my talk with her. I didn't ask her permission to post this. I don't think she even knows I have this blog, so I don't know if she'll ever read this.
But if she does, I hope she can tell that I completely honor and respect her choice. I feel really priveleged to have such intimate information about her body and her health and her personal choices. Talking to her helped me understand better what is going on in this country for other women facing breast cancer treatment decisions, and it helped me understand my own choices and situation better.
1. She chose to have the spacer plus implant surgery instead of the body-salad surgery. I didn't get to ask why she chose one over the other.
2. She's completed the surgery, with the nipple added and everything. This was interesting to me. I haven't had the chance to talk to a lot of other surviviors yet, but two of the stories I've heard were from women who didn't even get the nipples attached. They had the bulk of their breasts rebuilt, but by the time they were healed up enough to get their nipples added they felt like they'd already had enough surgery and having nipples wasn't really worth the effort, pain, risk and expense of going under the knife again. She obviously didn't feel this way.
3. Not only did she have the removed breast replaced, she had it made a size larger than the original one. To go along with that, she had an implant placed in her healthy breast, so that she would have a matched set. I think if I'd done reconstruction, I might have gone up a size too. Surely, after going through the agony of cancer, one deserves the compensation of a new "dream rack," or you could call it a "booby prize!"
4. I found this next bit incredibly interesting. She called the healthy breast, the one that didn't have cancer in it and now has an implant, she called this her "live" breast. She didn't refer to her other, reconstructed breast in the same context, so I don't know what she calls that one. But I can't help wonder, if one is "live" what is the other one?
5. The live breast continues to grow and shrink as she gains or loses weight. The other one doesn't. Here it is, the middle of winter in a cold climate and the holidays just ended. Most of us are carrying a few extra pounds and I guess she is too. Her "live" breast was noticably larger than the other one. I wondered how she felt about that. After all her surgery and healing and trying for a dream rack and everything, she still ends up with a lopsided bosom. Unfortunately, I didn't feel comfortable asking in the limited time we had together.
6. When I told her I hadn't done the reconstruction and didn't plan to, she replied that she probably wouldn't have done it either if she'd been older when it happened. I don't know her age, but my guess is that she's at least a decade older than me.
I've tried to be completely truthful, and respectful in reporting what I learned from my talk with her. I didn't ask her permission to post this. I don't think she even knows I have this blog, so I don't know if she'll ever read this.
But if she does, I hope she can tell that I completely honor and respect her choice. I feel really priveleged to have such intimate information about her body and her health and her personal choices. Talking to her helped me understand better what is going on in this country for other women facing breast cancer treatment decisions, and it helped me understand my own choices and situation better.
Monday, January 12, 2009
Stranger Sweethearts
As soon as I'm back in a weekly routine and having regular counseling sessions again, I plan to go back to reading Voices of Cancer, The Healing Companion: Stories for Courage, Comfort and Strength. I can't read this book without sessions because, despite the name, these stories make me fearful, uncomfortable and weak-willed. They are so much like my own story, it feels like they are about me. But, I want to be able to read it because, they are so much like my own story and it feels like they are about me.
I also hope weekly counseling will help me tackle some other challenging pages. That is, the pages and pages of medical bills that I have stashed away in various sensible and nonsensical places. I think I've paid them all, but I'm not really sure. Mostly, I think I've paid them all because it seems like I've paid dozens and dozens of them and I just can't imagine that there's anyone else out there who really deserves a slice of my incredible shrinking checking account.
It's hard to keep track. All the bills come from places that sound like Diagnostic Cellular Anesthesiological Imaging at Marion Prosthetic Laboratory Center for Healing. But of course, I can just make the check out to D C A I M P L C H.
I'm sure I'm exagerating. I'm sure these bills are not all as confusing as they seem. I think the fact that I am so snowballed by them is just more proof of something I have probably already written a dozen times in this blog: It's hard to think clearly about something that brings up strong feelings.
Of course, even if you've got steady pay checks coming in, it's natural to have some negative feelings when people want money from you. And, even if you're in perfect health, it's natural to feel a little scared when it comes to medical issues. As an unemployed cancer-survivor I have extra-strong feeling on both these topics. Double whammy indeed.
Because my fears of impending poverty and recurring carcinoma are counterbalanced by feelings of immense gratitude towards everyone who cared for me this past year, I manage to write the checks and put them in the mail with proper postage. It's unpleasant, but I do it.
Except for one.
I actually got a bill from Dr. H's office. If you've read my previous entries, you may remember that Dr. H is the surgeon who's attitude towards me felt so condescending, dismissive and confrontational that I walked out during the first few minutes of our scheduled consultation. I waited two weeks for that appointment. I waited an hour in his waiting room and another 30 minutes in the exam room. He spent fewer than 10 minutes of his time infurriating me, and then he sent me a bill for his time.
I really just can't believe it.
I haven't paid it. I don't even know where it is right now. If I remember correctly, the bill was for almost $200 and my insurance company paid for most of that. I just have a small co-pay due. Really, it would be worth the money just to pay it and forget about it, rather than spend my time and energy on the hassle of it all. But I just can't stand the idea that he is getting away with treating his patients like he treated me and then actually being reimbursed!
It's so upsetting I don't even know where to start. I guess I'm going to have to fight my insurance company and try to get them not to pay on of my providers. How ironic.
Maybe working my way through Voices of Cancer will give me some ideas. Maybe I'm not the only one having this kind of trouble with my medical bills. I know I'm not the only one whose been frustrated by doctors like this one. Before I had to put the book down, I found this on page 175,
"I found the medical world to be...filled with strangers who called me sweetheart and who expected me to simply present my body to them for procedures and treatment."
It describes Dr. H exactly. Maybe, instead of a check, I'll send him this book.
I also hope weekly counseling will help me tackle some other challenging pages. That is, the pages and pages of medical bills that I have stashed away in various sensible and nonsensical places. I think I've paid them all, but I'm not really sure. Mostly, I think I've paid them all because it seems like I've paid dozens and dozens of them and I just can't imagine that there's anyone else out there who really deserves a slice of my incredible shrinking checking account.
It's hard to keep track. All the bills come from places that sound like Diagnostic Cellular Anesthesiological Imaging at Marion Prosthetic Laboratory Center for Healing. But of course, I can just make the check out to D C A I M P L C H.
I'm sure I'm exagerating. I'm sure these bills are not all as confusing as they seem. I think the fact that I am so snowballed by them is just more proof of something I have probably already written a dozen times in this blog: It's hard to think clearly about something that brings up strong feelings.
Of course, even if you've got steady pay checks coming in, it's natural to have some negative feelings when people want money from you. And, even if you're in perfect health, it's natural to feel a little scared when it comes to medical issues. As an unemployed cancer-survivor I have extra-strong feeling on both these topics. Double whammy indeed.
Because my fears of impending poverty and recurring carcinoma are counterbalanced by feelings of immense gratitude towards everyone who cared for me this past year, I manage to write the checks and put them in the mail with proper postage. It's unpleasant, but I do it.
Except for one.
I actually got a bill from Dr. H's office. If you've read my previous entries, you may remember that Dr. H is the surgeon who's attitude towards me felt so condescending, dismissive and confrontational that I walked out during the first few minutes of our scheduled consultation. I waited two weeks for that appointment. I waited an hour in his waiting room and another 30 minutes in the exam room. He spent fewer than 10 minutes of his time infurriating me, and then he sent me a bill for his time.
I really just can't believe it.
I haven't paid it. I don't even know where it is right now. If I remember correctly, the bill was for almost $200 and my insurance company paid for most of that. I just have a small co-pay due. Really, it would be worth the money just to pay it and forget about it, rather than spend my time and energy on the hassle of it all. But I just can't stand the idea that he is getting away with treating his patients like he treated me and then actually being reimbursed!
It's so upsetting I don't even know where to start. I guess I'm going to have to fight my insurance company and try to get them not to pay on of my providers. How ironic.
Maybe working my way through Voices of Cancer will give me some ideas. Maybe I'm not the only one having this kind of trouble with my medical bills. I know I'm not the only one whose been frustrated by doctors like this one. Before I had to put the book down, I found this on page 175,
"I found the medical world to be...filled with strangers who called me sweetheart and who expected me to simply present my body to them for procedures and treatment."
It describes Dr. H exactly. Maybe, instead of a check, I'll send him this book.
Friday, January 9, 2009
Not Like Fried Snoots At All
I feel silly writing all this whiny complaining crap about losing a breast. I mean really. It’s not that big a deal. I feel like I should get over it. Somedays I think I am over it. But, laying in bed this morning, I absent mindedly rested my hand on my naked chest. I startled and flinched inside, surprised once again by the feel of hard bumpy bones under what seems like a dangerously thin layer of skin.
I can’t help but associate such protrusions with illness and death. Starvation. Decay. The left-over carcass from Thanksgiving dinner. It’s hard for me to combine what my hand is feeling with the otherwise complete sensation of inhabiting a healthy, functioning body.
When Mom and I were talking about how my chest would be after my surgery, we imagined it might be like a girls chest again, smooth and flat. That felt good, like I’d be fit and free. I’d travel back to a world where my body was able to do almost everything I asked of it. What it could do and how it felt counted for everything. What it looked like, how it fit into my clothes and how much it weighed didn’t count at all. I thought at least my right side would time travel. My left side would stay here, and I would end up elegantly straddling the power points of my life. I would be 8 years old, fresh and fearless, and 35 confident and wise. Wouldn’t that be lovely?
The lower half of my chest, the area beneath the incision does feel kind of like that. Dr. Rocco, thinking I might opt for reconstruction later on, left as much extra skin and flesh as she could. So the ribs on that part of my body are covered by a measure of fat that feels protective and healthy to my palm. Happy fat. Baby fat. Magic fat.
But a few inches higher, the skin shrinks back, the bones get pushy, and my fingertips transmit the message “wrong! wrong! wrong!” to my brain.
The first time I stuck my fingers under the edge of my bandage, and tentively explored my upper chest, I burst into tears. I had been so unprepared, and was thoroughly shocked to discover how extensive my mastectomy had been.
As kids, when my sister and I were pouting, my mom had a fail-proof method for making us smile. We’d be pushing our fat little lower lips out in protest at some insult or obstacle. As soon as she noticed that sour face, she’d make a scissor motion with her fingers, as if she might snip our pout right off. “Fried snoots for breakfast!” she’d call out tunefully. It used to make me so mad. It was impossible to pout with her scissoring and sing-songing at me like that. I had to smile too.
Before my surgery, I imagined it as a fried snoot-ectomy of sorts. Even though Dr. Rocco had carefully described the procedure to me, even though I’d read descriptons and looked at diagrams, I just couldn’t shake the assumption that they would just hold my breast out from my body and slice it off. It would be simple and clean, like clipping a toenail or biting the head off a chocolate bunny. I knew there’d be some blood and some stitches, but I figured the wound would be a straight line about 5 inches long at the most.
While the incision itself was only 5 linear inches or so, the total wound was much larger than that. It reached around my side and up under my arm. It spread upwards from the cut, stopping just a couple of inches from my collar bone.
When I think about how I got like this, I see Dr. Rocco and her assistants peering through a cat’s eye slit as long as the distance I can make between my thumb and index finger. Even though the room is brightly lit, they are wearing headlamps that help them see into the blobby, bloody world inside me. Someone is holding the severed edges outward, to make a kind of tent. Dr. Rocco is reaching in with her gloved hand and some kind of instrument. I picture a tool like a melon baller, with a small metal cup on one end of the straight handle and a larger one on the other end. I can’t decide if they have sharp, smooth edges, or are serrated around the rim. Probably the big one is smooth, and just used for removing the big globs of breast tissue. The little one has teeth, for reaching way up and scraping the surface of my muscles.
I know it’s silly to imagine it like this. I’m probably far from the truth. I could look it up. I could call Dr. Rocco and ask her. But I don’t really want to. As gruesome as my imaginary scenario is, I’m accustomed to it. The truth might be even more stomach-turning. I am currently operating under the assumption that no muscle tissue was removed. What if I’m wrong? I would find that really upsetting. I think I’m upset plenty already.
I forget where I read it, but someone lately was quoted as saying that if they survived breast cancer, they would just be happy about it, no matter what their body was like after surgery.
Maybe I’d feel like that, pure grateful, if I’d had cancer longer. Or, more accurately, if I’d known I had cancer for longer. No one knows how long I had it for. I was only aware of it for 4 weeks before it was removed. That wasn’t really long enough to totally shift my self-perception. So, when I’m considering my altered body, I’m not comparing it to my ill, endangered chest…I’m comparing it to the healthy, pretty, fit one I still think of as mine. I can’t help it, and I don’t think that woman could help it either, if she were in my situation.
But, I understand her attitude, and agree. I’m fine, really. It hardly hurts any more. The numb area is shrinking. I didn’t have any problems with infection or any difficulties healing. Really, shouldn’t I be over it by now?
I can’t help but associate such protrusions with illness and death. Starvation. Decay. The left-over carcass from Thanksgiving dinner. It’s hard for me to combine what my hand is feeling with the otherwise complete sensation of inhabiting a healthy, functioning body.
When Mom and I were talking about how my chest would be after my surgery, we imagined it might be like a girls chest again, smooth and flat. That felt good, like I’d be fit and free. I’d travel back to a world where my body was able to do almost everything I asked of it. What it could do and how it felt counted for everything. What it looked like, how it fit into my clothes and how much it weighed didn’t count at all. I thought at least my right side would time travel. My left side would stay here, and I would end up elegantly straddling the power points of my life. I would be 8 years old, fresh and fearless, and 35 confident and wise. Wouldn’t that be lovely?
The lower half of my chest, the area beneath the incision does feel kind of like that. Dr. Rocco, thinking I might opt for reconstruction later on, left as much extra skin and flesh as she could. So the ribs on that part of my body are covered by a measure of fat that feels protective and healthy to my palm. Happy fat. Baby fat. Magic fat.
But a few inches higher, the skin shrinks back, the bones get pushy, and my fingertips transmit the message “wrong! wrong! wrong!” to my brain.
The first time I stuck my fingers under the edge of my bandage, and tentively explored my upper chest, I burst into tears. I had been so unprepared, and was thoroughly shocked to discover how extensive my mastectomy had been.
As kids, when my sister and I were pouting, my mom had a fail-proof method for making us smile. We’d be pushing our fat little lower lips out in protest at some insult or obstacle. As soon as she noticed that sour face, she’d make a scissor motion with her fingers, as if she might snip our pout right off. “Fried snoots for breakfast!” she’d call out tunefully. It used to make me so mad. It was impossible to pout with her scissoring and sing-songing at me like that. I had to smile too.
Before my surgery, I imagined it as a fried snoot-ectomy of sorts. Even though Dr. Rocco had carefully described the procedure to me, even though I’d read descriptons and looked at diagrams, I just couldn’t shake the assumption that they would just hold my breast out from my body and slice it off. It would be simple and clean, like clipping a toenail or biting the head off a chocolate bunny. I knew there’d be some blood and some stitches, but I figured the wound would be a straight line about 5 inches long at the most.
While the incision itself was only 5 linear inches or so, the total wound was much larger than that. It reached around my side and up under my arm. It spread upwards from the cut, stopping just a couple of inches from my collar bone.
When I think about how I got like this, I see Dr. Rocco and her assistants peering through a cat’s eye slit as long as the distance I can make between my thumb and index finger. Even though the room is brightly lit, they are wearing headlamps that help them see into the blobby, bloody world inside me. Someone is holding the severed edges outward, to make a kind of tent. Dr. Rocco is reaching in with her gloved hand and some kind of instrument. I picture a tool like a melon baller, with a small metal cup on one end of the straight handle and a larger one on the other end. I can’t decide if they have sharp, smooth edges, or are serrated around the rim. Probably the big one is smooth, and just used for removing the big globs of breast tissue. The little one has teeth, for reaching way up and scraping the surface of my muscles.
I know it’s silly to imagine it like this. I’m probably far from the truth. I could look it up. I could call Dr. Rocco and ask her. But I don’t really want to. As gruesome as my imaginary scenario is, I’m accustomed to it. The truth might be even more stomach-turning. I am currently operating under the assumption that no muscle tissue was removed. What if I’m wrong? I would find that really upsetting. I think I’m upset plenty already.
I forget where I read it, but someone lately was quoted as saying that if they survived breast cancer, they would just be happy about it, no matter what their body was like after surgery.
Maybe I’d feel like that, pure grateful, if I’d had cancer longer. Or, more accurately, if I’d known I had cancer for longer. No one knows how long I had it for. I was only aware of it for 4 weeks before it was removed. That wasn’t really long enough to totally shift my self-perception. So, when I’m considering my altered body, I’m not comparing it to my ill, endangered chest…I’m comparing it to the healthy, pretty, fit one I still think of as mine. I can’t help it, and I don’t think that woman could help it either, if she were in my situation.
But, I understand her attitude, and agree. I’m fine, really. It hardly hurts any more. The numb area is shrinking. I didn’t have any problems with infection or any difficulties healing. Really, shouldn’t I be over it by now?
Tuesday, January 6, 2009
Monday Night's Dream
I was in a doctor’s office that I’ve never seen before in real life. The reception desk was on my right and I was wearing a striped dress. Dr. Rocco came out from the back and told me I had cancer again, this time in my left breast. I asked her how she knew and she pointed to my dress. As she said the words “I can see it,” I could suddenly see it too. In two places the stripes of the dress parted around pearly, colorless circles. The space between the circles and the stripes was filled up with a milky-looking slickness that tapered at both ends. These cancer-spots on my dress reminded me of eyes on a peacock tail feather. They reminded me of egg yolks so pale they matched the whites surrounding them. They reminded me of river-stones and oysters and moons.
We took the dress off, the receptionist, Dr. Rocco and I. It slipped off my body and we held it up to the light streaming in from the window on my left. We held it up high enough that it reached the curtain rod at the top. We hung it on the rod and suddenly it wasn’t a dress anymore, it was a curtain. We stood there looking at it as the cancer-egg-oyster-tails grew and shifted between the fat colored stripes.
I was sad, gazing at this indisputable evidence my cancer had returned. Then, suddenly, I had a hopeful thought. “Dr. Rocco,” I asked, “How can this be my cancer? It’s not even on my body, it’s on the curtain!” She shrugged and told me, “Cancer is strange. We don’t understand everything about it. This is yours alright.”
We took the dress off, the receptionist, Dr. Rocco and I. It slipped off my body and we held it up to the light streaming in from the window on my left. We held it up high enough that it reached the curtain rod at the top. We hung it on the rod and suddenly it wasn’t a dress anymore, it was a curtain. We stood there looking at it as the cancer-egg-oyster-tails grew and shifted between the fat colored stripes.
I was sad, gazing at this indisputable evidence my cancer had returned. Then, suddenly, I had a hopeful thought. “Dr. Rocco,” I asked, “How can this be my cancer? It’s not even on my body, it’s on the curtain!” She shrugged and told me, “Cancer is strange. We don’t understand everything about it. This is yours alright.”
This I believe
I think I have cancer in my left breast. I have no reason for thinking this. I don’t even know if “thinking” is the right word. It’s more like a feeling. I guess I "feel" I have cancer in my left breast. That’s a little more accurate, but still not right. The truth is, I believe I have cancer in my left breast. I just believe it’s there.
I don’t want this to be true. I think about calling Dr. Rocco and asking her if it’s possible. I’ve asked her already. I asked my oncologist, Dr. Kennedy, too. They’ve both told me I’m safe. I’ve had a mammogram and a MRI on that breast, they remind me. Even tiny little lump #2, which was invisible on the mammograms, showed up clearly on the MRI. So, I’m safer than most women. I should be completely assured that I do not have cancer in my left breast. Even a tiny tiny little cancerous cluster would have shown up on the MRI. Right?
Except that I also had cancer in my nipple. What did they call it? Crone’s disease? Rhone’s disease? I can’t even remember now. I remember it is also the name of a bone problem…I think. Geez. I really need to brush up on my research.
Whatever they called it…it was a special and rare kind of breast cancer that landed in my right nipple. The mammogram didn’t catch it. The MRI didn’t catch it. They only even found out I had it by poking around in my breast after it had been removed from my body.
These are the numbers I remember: only 3% of breast cancer patients have this kind of cancer and most of those are older than 65. What is it about me that put me in this statistically unlikely situation? What is it about me that will keep me from getting cancer in my other nipple? Nothing that I can think of. I feel convinced that I am going to start growing cancer in my remaining nipple any minute now. That is, if I haven’t already.
I think about calling the doctors and asking them again. “Are you SURE I don’t have breast cancer? What about my nipple!?”
Nipple. Nipple. Nipple. What a silly word. I used to play a game with friends where we imagined a business we could open and then had to come up with a name for it. What would we call the topless hair salon? Snipples.
If I called my doctors and asked them about my nipple, what would they do? What could they do? Offer to biopsy, probably. But, I don’t want bits of skin sliced off my nipple. Really. I don’t. Who can blame me for that? I’m sick of being poked and sampled and having pieces of me removed.
So, I don’t call them.
Maybe I’d worry less if I was taking Tamoxifen. But then, I’d be worrying that I had the side effect, uterine cancer. Dr. Kennedy said uterine cancer is easy to spot, because it makes you bleed at unusual times. Just this past month, my period came a week early, or at least it seemed like it to me. Whenever my period starts I always think it can’t possibly be time for that again already. So I can’t really be trusted. But I had unusually painful cramps, and it flowed dark and heavy. Strangely, it only lasted about a day and a half. I didn’t worry about it. I figure my body knows what it’s doing. But, if I was taking Tamoxifen, you bet I’d worry. I’d probably be convinced I had uterine cancer.
Instead, I’m convinced I have nipple cancer.
Some days I try not to think about it. Other days I let myself. It doesn't seem to matter. Like God and ghosts and aliens, it's always there because I believe in it, regardless of what I think, when I think or whether I think.
Nipple cancer does have a symptom. It acts like something called dermatitis. It looks and feels like dry skin. But nipples are weird any way. How can I be certain it's not dryer than it ought to be? It already looks and feels different than any other skin on my body. Does a nipple even count as "skin?" Do lips? I don't know. I feel unqualified to even have a body. I don't know enough about it.
Mom shared a list with me years ago. I don't know where she found it. It was a list instructions for living a human life. I think there were seven of them altogether, but all I can remember is the first one.
1. You will be given a body.
I guess I'm not ready for lessons 2-7 yet. I'm still struggling with this first one.
Is my nipple normal? Hard to tell. I don't have anything to compare it to, now that the other one is gone.
It seems like such a silly, trivial thing to be worried about. It's a tiny little part of my body, not even as large as my thumbprint. It's more like a pinky-print.
And yet, the standard treastment for nipple cancer, if I remember correctly, is prompt removal of the entire breast. They wouldn't do that if it wasn't serious, would they?
I don’t want this to be true. I think about calling Dr. Rocco and asking her if it’s possible. I’ve asked her already. I asked my oncologist, Dr. Kennedy, too. They’ve both told me I’m safe. I’ve had a mammogram and a MRI on that breast, they remind me. Even tiny little lump #2, which was invisible on the mammograms, showed up clearly on the MRI. So, I’m safer than most women. I should be completely assured that I do not have cancer in my left breast. Even a tiny tiny little cancerous cluster would have shown up on the MRI. Right?
Except that I also had cancer in my nipple. What did they call it? Crone’s disease? Rhone’s disease? I can’t even remember now. I remember it is also the name of a bone problem…I think. Geez. I really need to brush up on my research.
Whatever they called it…it was a special and rare kind of breast cancer that landed in my right nipple. The mammogram didn’t catch it. The MRI didn’t catch it. They only even found out I had it by poking around in my breast after it had been removed from my body.
These are the numbers I remember: only 3% of breast cancer patients have this kind of cancer and most of those are older than 65. What is it about me that put me in this statistically unlikely situation? What is it about me that will keep me from getting cancer in my other nipple? Nothing that I can think of. I feel convinced that I am going to start growing cancer in my remaining nipple any minute now. That is, if I haven’t already.
I think about calling the doctors and asking them again. “Are you SURE I don’t have breast cancer? What about my nipple!?”
Nipple. Nipple. Nipple. What a silly word. I used to play a game with friends where we imagined a business we could open and then had to come up with a name for it. What would we call the topless hair salon? Snipples.
If I called my doctors and asked them about my nipple, what would they do? What could they do? Offer to biopsy, probably. But, I don’t want bits of skin sliced off my nipple. Really. I don’t. Who can blame me for that? I’m sick of being poked and sampled and having pieces of me removed.
So, I don’t call them.
Maybe I’d worry less if I was taking Tamoxifen. But then, I’d be worrying that I had the side effect, uterine cancer. Dr. Kennedy said uterine cancer is easy to spot, because it makes you bleed at unusual times. Just this past month, my period came a week early, or at least it seemed like it to me. Whenever my period starts I always think it can’t possibly be time for that again already. So I can’t really be trusted. But I had unusually painful cramps, and it flowed dark and heavy. Strangely, it only lasted about a day and a half. I didn’t worry about it. I figure my body knows what it’s doing. But, if I was taking Tamoxifen, you bet I’d worry. I’d probably be convinced I had uterine cancer.
Instead, I’m convinced I have nipple cancer.
Some days I try not to think about it. Other days I let myself. It doesn't seem to matter. Like God and ghosts and aliens, it's always there because I believe in it, regardless of what I think, when I think or whether I think.
Nipple cancer does have a symptom. It acts like something called dermatitis. It looks and feels like dry skin. But nipples are weird any way. How can I be certain it's not dryer than it ought to be? It already looks and feels different than any other skin on my body. Does a nipple even count as "skin?" Do lips? I don't know. I feel unqualified to even have a body. I don't know enough about it.
Mom shared a list with me years ago. I don't know where she found it. It was a list instructions for living a human life. I think there were seven of them altogether, but all I can remember is the first one.
1. You will be given a body.
I guess I'm not ready for lessons 2-7 yet. I'm still struggling with this first one.
Is my nipple normal? Hard to tell. I don't have anything to compare it to, now that the other one is gone.
It seems like such a silly, trivial thing to be worried about. It's a tiny little part of my body, not even as large as my thumbprint. It's more like a pinky-print.
And yet, the standard treastment for nipple cancer, if I remember correctly, is prompt removal of the entire breast. They wouldn't do that if it wasn't serious, would they?
I was reading a book last month called Voices of Breast Cancer I didn't read much of it, but what I read was quite good. I would have read more, except I came across a story that was too much like mine. Some woman in her 30's had been diagnosed with ductal carcinoma insitu. She'd had a mastectomy and been pronounced cancer free. She didn't even need to undergo radiation or chemo. Hooray for her and her loved ones. Then, a few years later, she had cancer in her other breast. This time it had spread to her bones before they caught it. I guess she died or is dying now. I don't know. I didn't read any further.
Maybe I'm dying? I don't feel like it. But I could be. I guess anyone could be. I believe I might be. But, it doesn't seem worth the hassle, humiliation, pain, suspense and despair of having my nipple biopsied. That's why I don't use the word "think," when talking about my alleged nipple cancer. I am obviously not thinking clearly. Given the choice between my nipple or my life...surely I would choose life!
But I'm not being given a choice. It's not that clear! I'm just silently and constantly convinced that my body in busy turning herself against me.
It's sad. We used to be good friends, my body and me.
If some other friend was acting this bad, I would just stop associating with them. I'm not going to put up with this! But this relationship is more like one you'd have with a child. No matter how many poisonous, deadly habits she aquires, I just have to love her harder.
Monday, January 5, 2009
Clean Slate
It’s morning, my favorite time of day, on Monday, my favorite day of the week. January is too cold to be my favorite month, but New Year’s is for sure my favorite holiday. I love the new beginingness of it, the chance to start all over fresh. I love this chance to pause for a moment and look out at the clean stretch of life ahead…a time with no mistakes in it yet, and no regrets. So, on this…the first Monday morning of 2009, I’m looking forward to a really wonderful year.
I’m settling into a new home now, and a new routine. I plan to make writing an everyday part of my life again, like it was back in September, before I started traveling so much. Moving from place to place and not having much of a daily schedule has been the main thing that’s kept me from consistently posting blog entries. But, even if I write for 3 hours each morning and force myself to publish something every week, I still have a problem that is going to get in the way of keeping up the Double Whammy Diary. I have a problem with sex.
I’ve tried really hard to give an honest and complete account of my cancer experiences. I want to share the real details of all the procedures, appointments and options I’ve faced and am still facing. I want to be open about the feelings I struggle with, even when they are embarrassing and unattractive. I want to share all the big and little ways in which having cancer has changed my life. I want to be unflinchingly and daringly forthright. I want to give a real, true, honest, unvarnished account. When looking over my recent memories, and deciding what to share, I don’t want to avert my gaze away from unsavory, impolite or intimate events. I want to take a full frontal approach to sharing my story. This means I have to write about sex.
Perhaps if I’d had melanoma, or cancer of the spleen, I’d be able to write from a neuter perspective. But breast cancer is unavoidably a sexed and gendered issue. I really do want to keep writing about breast cancer. But, I really don’t want to write about sex. You can see where I have a problem.
There are lots of reasons not to write about sex. What if I run for office and my opposition uses my sex life to discredit my character? What if I attract a stalker? What if prospective employers google me and find this blog? These possibilities don’t really bother me.
Here’s what gets in my way:
1. My family reads this blog. I’m not going to say any more about that right now except, thank god my grandma doesn’t have a computer.
2. If I’m going to write about sex, I’m going to have to write about being a lesbian. I’m afraid this will marginalize my perspective and keep some people from being able to relate to it.
3. It’s just plain scary.
I wonder what professional authors do? A lot of them probably just do what I’m doing, and avoid writing about such topics. But some of them write really honestly about scary, marginalizing things I’m sure their families don’t want to read. I’d like to figure out how to be like that. It’s too late to start using a pseudonym, so I’ll have to find another way to do it. I’ll probably make lots of mistakes along the way. But, I haven’t made them yet!
Happy New Year!
I’m settling into a new home now, and a new routine. I plan to make writing an everyday part of my life again, like it was back in September, before I started traveling so much. Moving from place to place and not having much of a daily schedule has been the main thing that’s kept me from consistently posting blog entries. But, even if I write for 3 hours each morning and force myself to publish something every week, I still have a problem that is going to get in the way of keeping up the Double Whammy Diary. I have a problem with sex.
I’ve tried really hard to give an honest and complete account of my cancer experiences. I want to share the real details of all the procedures, appointments and options I’ve faced and am still facing. I want to be open about the feelings I struggle with, even when they are embarrassing and unattractive. I want to share all the big and little ways in which having cancer has changed my life. I want to be unflinchingly and daringly forthright. I want to give a real, true, honest, unvarnished account. When looking over my recent memories, and deciding what to share, I don’t want to avert my gaze away from unsavory, impolite or intimate events. I want to take a full frontal approach to sharing my story. This means I have to write about sex.
Perhaps if I’d had melanoma, or cancer of the spleen, I’d be able to write from a neuter perspective. But breast cancer is unavoidably a sexed and gendered issue. I really do want to keep writing about breast cancer. But, I really don’t want to write about sex. You can see where I have a problem.
There are lots of reasons not to write about sex. What if I run for office and my opposition uses my sex life to discredit my character? What if I attract a stalker? What if prospective employers google me and find this blog? These possibilities don’t really bother me.
Here’s what gets in my way:
1. My family reads this blog. I’m not going to say any more about that right now except, thank god my grandma doesn’t have a computer.
2. If I’m going to write about sex, I’m going to have to write about being a lesbian. I’m afraid this will marginalize my perspective and keep some people from being able to relate to it.
3. It’s just plain scary.
I wonder what professional authors do? A lot of them probably just do what I’m doing, and avoid writing about such topics. But some of them write really honestly about scary, marginalizing things I’m sure their families don’t want to read. I’d like to figure out how to be like that. It’s too late to start using a pseudonym, so I’ll have to find another way to do it. I’ll probably make lots of mistakes along the way. But, I haven’t made them yet!
Happy New Year!
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