A friend sent me this link today. It's a good article, about how women aren't getting all the information they need to make informed decisions about their reconstruction. It talks about the reasons why some surgeons only mention the implant option, and not the more extensive, but more frequently successful TRAM flap options. The writer has done her research and describes the situation and the procedures very cleary.
http://www.nytimes.com/2008/12/23/health/23beauty.html?pagewanted=1&_r=1&hp
But, I have two problems with the article.
One. The title of the article is "The Price of Beauty: Some Hidden Choices in Breast Reconstruction." I find this so irritating. I'm still struggling to articulate exactly what all the issues related to losing a breast are, so it's hard for me to write exactly why this is so galling. It feels misleading, dismissive, and minimizing. It seems to reduce the issues around post-mastectomy breast recontruction down to vanity.
Women do not have their breasts rebuilt because they are vain.
I didn't forgo reconstruction because I am not vain. (Heaven help me, I can't pass a mirror, or a storefront window without looking at my own reflection.)
It's a completely inappropriate title.
This article doesn't really discuss beauty at all. It discusses different ways to stretch, slice, re-assemble and introduce artificial elements to women's bodies.
This article does, however, discuss price. It talks about how the profit margin of various surgeries affects which information a woman is given.
This headline reminds me of one I saw years ago on the cover of the Rocky Mountain News. The article covered a court case in which the local government had been found guilty of discriminating against people on the basis of their sexual orientation. I don't know how such a case could have come to court, much less been successful. As far as I know, the Colorado State Constitution offers no protection to people who are being discriminated against on the basis of their ascribed alphabet letter, be it G, L, B, T, Q or S.
But I do remember that the wronged party won. And I do remember the conservative spin that this publication put on it.
All across the state, front pages trumpeted, "Gay Rights Tab: 40 million!"
What a joke. It should have read, "Unlawful Discrimination costs taxpayers 40 million!"
And if I was reading the New York Times on paper right now, instead of on-line, I would take the biggest fattest sharpie I could find and cross out, "The Price of Beauty." In it's place I would write a more truthful, more accurate and more controversial title.
"The Price of Capitalist Health Care: Hidden Choices In Breast Reconstruction."
With a title like this, the author surely would have been compelled to addressed my other complaint. If Ms. Singer is trying to reveal the hidden choices, why does she not mention the really obvious one, not having reconstruction at all.
Maybe she and everyone else who writes about and talks about and performs these surgeries without mentioning it thinks this option doesn't need to be discussed because it's obvious. But that's just silly.
Doctors are in an extrememly powerful position. They exert their influence over patients not just throught the options they discuss, but also throught the ones they don't discuss. Imagine you are unhappily pregnant and your doctor discusses the possible termination options without mentioning the "obvious" choice of letting the pregnancy run it's course. Wouldn't you feel that he was steering you in a direction. Of course!
Imagine now, that you don't live in today's liberal culture. Instead, imagine that you live in a culture where the site of a pregnant women is as unsettling and questionable as say, the sight of a woman with only one breast.
How will you even have the courage to consider the option that your own trusted doctor doesn't even deem valid enough to mention?
The choice to forgo reconstruction is not obvious. And yet, it's a valid, safe, inexpensive, option that involves considerably less time, effort and pain than the alternatives. Every doctor discussing mastectomies should be offering this to his/her patient.
Especially considering that, unlike all the other options, this option allows you to easily change your mind later on.
How many mastectomy patients would wait a few months, or a year, or a decade, if they knew that they could have their reconstruction completed after the surgery?
If my own experience is any indication, women are led to believe that they need to have the reconstruction initiated on the same day they have their breast removed. We are led to believe that choosing to live without a breast would be unspeakably bizarre.
It's just not true. But who's telling us, unless we ask? And how do we ask intelligent questions about things we don't understand? And how do take the time to read and research and understand these complex issues when we feel like our lives are at stake if we don't hurry up and do something!
Tuesday, December 23, 2008
Saturday, December 6, 2008
Yes
On Sunday, we met for breakfast at Bob Evans. All my family that lives in Maryland was there. My mother, sister, grandmother, brother-in-law, and two nephews came. So did my Aunt who lives in Virginia. It was a perfect opportunity for K and I to reveal the secret we've been keeping for weeks.
Well, it wasn't totally a secret. I told my mom right away. But, for everyone else, we wanted to wait and tell them in person. After our breakfast announcement, I told Aunt C. on the phone. I guess my cousins and Uncle G. might find out by talking to her, or by reading this blog...if I don't call them soon. Sorry! Maybe I'll call you today, because I'd rather you hear it from me than read it on this blog.
But even if you read it on this blog, it'll be better than the way my best friend from high school found out. She heard it at work, from a woman she didn't recognize, who turned out to be the grown-up little sister of another friend we'd had in school. This woman knew about it because she'd seen it on my sister's facebook.
I'm getting married.
This is startling to a lot of people. I mean, I wasn't even dating anyone!
But, 12 years ago I was. We were pretty serious. We were pretty happy. I was pretty young. And so, my answer to that first proposal was, "Sweetheart, I'm not the marrying kind. But if I was, you're the kind I'd marry."
At least, that's what I've been told. I don't remember saying that at all. What I do remember saying is, "The very idea of getting married makes me want to take a cold shower."
So, things got kind of weird between us and we stopped dating. But we stayed friends, and always loved each other. I'm sure we would have gotten together again at some point, except that we never managed to both be single at the same time.
For over a decade now, I've been asking myself, "What would have happened if I had said yes to K?" I never know the answer, but I'm always sure that it would have been something good. I'm always sure that we would have been happy and that we would still be together.
I feel so incredibly lucky that I got a second chance to answer the same question from the same person. And I feel absolutely certain that this time, I got it right.
Well, it wasn't totally a secret. I told my mom right away. But, for everyone else, we wanted to wait and tell them in person. After our breakfast announcement, I told Aunt C. on the phone. I guess my cousins and Uncle G. might find out by talking to her, or by reading this blog...if I don't call them soon. Sorry! Maybe I'll call you today, because I'd rather you hear it from me than read it on this blog.
But even if you read it on this blog, it'll be better than the way my best friend from high school found out. She heard it at work, from a woman she didn't recognize, who turned out to be the grown-up little sister of another friend we'd had in school. This woman knew about it because she'd seen it on my sister's facebook.
I'm getting married.
This is startling to a lot of people. I mean, I wasn't even dating anyone!
But, 12 years ago I was. We were pretty serious. We were pretty happy. I was pretty young. And so, my answer to that first proposal was, "Sweetheart, I'm not the marrying kind. But if I was, you're the kind I'd marry."
At least, that's what I've been told. I don't remember saying that at all. What I do remember saying is, "The very idea of getting married makes me want to take a cold shower."
So, things got kind of weird between us and we stopped dating. But we stayed friends, and always loved each other. I'm sure we would have gotten together again at some point, except that we never managed to both be single at the same time.
For over a decade now, I've been asking myself, "What would have happened if I had said yes to K?" I never know the answer, but I'm always sure that it would have been something good. I'm always sure that we would have been happy and that we would still be together.
I feel so incredibly lucky that I got a second chance to answer the same question from the same person. And I feel absolutely certain that this time, I got it right.
Thursday, December 4, 2008
Choose Your Favorite Entry
Finally, I've got my technical problems fixed and am able to post on this blog again. Now I'm just wondering...what happened to November!?
If you haven't totally given up on this blog by now...if you still check it once in a while...if you ever read it, I could use your advice!
My cousin E...who is a published author herself and knows about such things, thinks I should write a book proposal for my Double Whammy Diary. She thinks I've got a third of a book written already, and that my story is timely and that my perspective is valuable. She doesn't think I need to do much extra work to get a book deal. Her suggestion is, send a brief proposal and a few of my favorite blog entries to publishers who might be interested.
My problem is...I don't know which ones to print!
Do you have suggestions? Which were your favorites? Which ones made you laugh out loud. Which ones did you keep thinking about after you read them? Which ones seemed totally original? Which ones made you wish there was more to read? Which ones would make you decide to take a chance on an unknown author, if you were a publisher?
I'd love to know!
Thank you, thank you, thank you, for believing in me.
P.S. If you haven't heard alread, I'm getting married! More on that later.
If you haven't totally given up on this blog by now...if you still check it once in a while...if you ever read it, I could use your advice!
My cousin E...who is a published author herself and knows about such things, thinks I should write a book proposal for my Double Whammy Diary. She thinks I've got a third of a book written already, and that my story is timely and that my perspective is valuable. She doesn't think I need to do much extra work to get a book deal. Her suggestion is, send a brief proposal and a few of my favorite blog entries to publishers who might be interested.
My problem is...I don't know which ones to print!
Do you have suggestions? Which were your favorites? Which ones made you laugh out loud. Which ones did you keep thinking about after you read them? Which ones seemed totally original? Which ones made you wish there was more to read? Which ones would make you decide to take a chance on an unknown author, if you were a publisher?
I'd love to know!
Thank you, thank you, thank you, for believing in me.
P.S. If you haven't heard alread, I'm getting married! More on that later.
Pockets and Bubbles
I love my little pink prosthesis, Phyllis. I love knowing she’s there and I love the pressure of her weight against my damaged skin and I love the way she saves my figure in in a tight T-shirt. I love to hold her in my hand and to squeeze her and play with the shy and retiring little nipple. Unlike a real nipple, the more I touch it, the more it sinks into the fleshy hill behind it. It practically disappears if I press right on it, but it always comes back after a few minutes.
But lately, despite her charms, Phyllis is giving me trouble. I don’t lose her anymore, thank goodness. Years ago, Mom sent me a set of black and red zippered bags for my birthday. They were pretty, but they weren’t anything super-special. They were just the kind of thing you would use to organize your suitcase or your top dresser drawer. She apologized at the time for not coming up with a better gift idea, but I still cherish these bags years after I've forgotten or used up other, showier presents. They are pretty, and useful, and fit my strict color scheme. Best of all, there always seems to be one in the perfect size and shape whenever I suddenly have a need for such a thing. I've used them for more purposes than I can count and the medium sized one is now the perfect home for Phyllis to share with my compression sleeve and the pink music festival style bracelet that annouces " ALERT:LYMPHEDEMA No Blood Tests, Blood Pressure, No I.V. or Injections Into this Arm!”
Now that I have a place to put her, I do a good job of remembering to put her away every night. My problems start when I am getting dressed the next morning.The two bras I bought the day I got her each have a little pocket sewn into the cup. She rides in there and it keeps her from moving around on her own. Also, it’s just more attractive. She’s hidden from view. If I’m wearing something low cut, and bend over to pick something up, and someone happens to see down my blouse far enough to notice that something is off*, they might notice that my chest looks unbalanced. They might notice that the silky black fabric is doing something a little different on the right side than it is on the left, but the details of the situation are not entirely obvious. They won’t see what looks like a shiny chicken cutlet peeking out between my body and my lingerie.
More importantly, I don’t see it if I happen to glance down my own blouse. I hate the way that looks. There is my smooth, clean, healthy skin. There is my cute, stylish undergarment. And there, nestled between them like an over-zealous chaperon, sits this fatty cold-cut. It cleaves to my skin in the center, but peels away at the edges. The look is sloppy and unsettling, like I left the body factory before I was fully assembled. It makes me sad to think of myself like that.
The problem is, if I use the little pocket, I can’t get her out again without practically undressing. This makes an awkward follow up to my frequent invitation, “Hey, wanna see my fake breast?” When I can’t plunge into my neckline and whip her out at a moments notice, I feel like I shouldn't even mention her existence. Being forced to err on the side of modesty and tact might seem like another plus side to using the pocket, but it’s not. Shameless exploitation of show and tell opportunities is one of the entitlements that comes along with breast cancer survivorship, and I like to make full use of it.
The other problem is, I’m pretty sick of having just these two servicable, but dull brazierres to choose from. I long for the black and cream colored lace I bought at Soma during a shopping spree with Iona last Thanksgiving. I sorely miss the cute pink racer-back that snaps in front and works great under tank tops. I sigh and shrug at department story manikins in their tempting underwire fashions with the pretty matching panties. I don’t even think about trying things on anymore because the voice in my head says, "Not for me. Not for me."
But it's not as pitiful as it sounds. I'm probably just being lazy. I think it's time to sit down with a needle and thread and figure out how to do some custom alterations to my undergarments. I'm developing a plan for fast application of easy-exit pockets. If it works out, I can buy and wear any bra I choose.I’ll still be able to bring Phyllis out at parties, but I won’t have to worry about random peek-a-boos. I won’t have to worry about her drifting over to the center of my chest, and I won’t have to worry about her sticking to my skin. She soaks up my body heat nicely after a few minutes, but when I first tuck her in, she’s always bitingly cold.
And there are hygienic concerns. I mean, really. What if I get sweaty? How often should I wash her? What should I use? Dish soap? Woollite? What about my lotion, my underarm deodorant, my perfume? These things might have a degrading effect over the long term. I don’t remember if she came with care instructions. If she did, I’ve discarded them by now. Or, they’re tucked in a storage shed twelve thousand miles from here.
I don’t even know what she’s made of.
The inside substance reminds me of silly putty, but softer. It reminds me of jello, but firmer. It reminds me of memory foam, but it’s not as firm as that. Overall, Phyllis seems very fragile and delicate. The outer surface, which appears to be responsible for holding the whole thing together and creating it’s pleasing shape, is nothing more that a clear plastic sheet several times thinner than a Ziplock bag. It’s more like the free bags you peel off the staticky roll in the produce aisle. I try to re-use those bags, but they just don’t seem up to the task of constant occupation. I use Phyllis almost every day!
What is going to become of her?She’s already starting to change. When I first got her, all her surfaces were smooth. Now, on her back side (which is my problem area too,) she’s developed some unsavory bumps. Multiple air pockets have formed between her pinkish bulk and the transparent sheet of her skin. At first these bubbles were small and pretty evenly distributed, but they’ve started to merge. Now there’s one big blister the size of a quarter, where the casing has completely separated itself from the filling. It’s driving me nuts. I want to prick it with a pin and force the extra air out. Everyone I talk to says this is a bad idea. But when I show it to them, they can understand the temptation.
I wonder what would happen if I popped it? Could I make a little round hole in the plastic without damaging the integrity of the whole thing. Would the surface start to rip? Would the inside start to squeeze out like toothpaste? Would a little dot of superglue save it? Would it need a Band-aid?Thank goodness the bubble has formed on the back side. If it somehow moved to the front, and settled into the center, the results would be devastating. My adorable little nipple would end up looking like the empty reservoir at the tip of a french letter. Forgive me for the U.K. euphemism. I cannot bring my self to write the C-word. (If you don’t know the phrase, or for a fascinating historical account, go to http://en.wikipedia.org/wiki/French_letter) I cannot bring myself to write the word, because the very idea of such an allusion turns my stomach.
What would I do if this happened? Disgust at one's own prosthesis is not quite close enough to home to be called self-loathing, but it's in the neighborhood. I’ve got enough body-image issues to deal with since my surgery. If that air pocket bubbles up under my nipple, I’ll settle for a gym sock stuffed C-cup. Phyllis would be in the trash faster than you can blink.
Like I said at the beginning, I love Phyllis. But, sometimes love just isn’t enough.
*I first typed the word “off” in the third paragraph as a way to say “not quite right.” I laughed at the double meaning when I re-read it. Something certainly is "off" when it comes to my chest, and we know exactly what it is! Looking the word up in the Thinkmap Visual Thesaurus (http://www.visualthesaurus.com/) that my sweetheart recently bought us a subscription for, I found that almost all the definitions for the word “off” seem strangely accurate in this context.
a. Not in operation or operational
b. Below a satisfactory level
c. In an unpalatable state
d. Not performing or scheduled for duties
And my favorite:
e. Not plugged in or connected to a power source.
But lately, despite her charms, Phyllis is giving me trouble. I don’t lose her anymore, thank goodness. Years ago, Mom sent me a set of black and red zippered bags for my birthday. They were pretty, but they weren’t anything super-special. They were just the kind of thing you would use to organize your suitcase or your top dresser drawer. She apologized at the time for not coming up with a better gift idea, but I still cherish these bags years after I've forgotten or used up other, showier presents. They are pretty, and useful, and fit my strict color scheme. Best of all, there always seems to be one in the perfect size and shape whenever I suddenly have a need for such a thing. I've used them for more purposes than I can count and the medium sized one is now the perfect home for Phyllis to share with my compression sleeve and the pink music festival style bracelet that annouces " ALERT:LYMPHEDEMA No Blood Tests, Blood Pressure, No I.V. or Injections Into this Arm!”
Now that I have a place to put her, I do a good job of remembering to put her away every night. My problems start when I am getting dressed the next morning.The two bras I bought the day I got her each have a little pocket sewn into the cup. She rides in there and it keeps her from moving around on her own. Also, it’s just more attractive. She’s hidden from view. If I’m wearing something low cut, and bend over to pick something up, and someone happens to see down my blouse far enough to notice that something is off*, they might notice that my chest looks unbalanced. They might notice that the silky black fabric is doing something a little different on the right side than it is on the left, but the details of the situation are not entirely obvious. They won’t see what looks like a shiny chicken cutlet peeking out between my body and my lingerie.
More importantly, I don’t see it if I happen to glance down my own blouse. I hate the way that looks. There is my smooth, clean, healthy skin. There is my cute, stylish undergarment. And there, nestled between them like an over-zealous chaperon, sits this fatty cold-cut. It cleaves to my skin in the center, but peels away at the edges. The look is sloppy and unsettling, like I left the body factory before I was fully assembled. It makes me sad to think of myself like that.
The problem is, if I use the little pocket, I can’t get her out again without practically undressing. This makes an awkward follow up to my frequent invitation, “Hey, wanna see my fake breast?” When I can’t plunge into my neckline and whip her out at a moments notice, I feel like I shouldn't even mention her existence. Being forced to err on the side of modesty and tact might seem like another plus side to using the pocket, but it’s not. Shameless exploitation of show and tell opportunities is one of the entitlements that comes along with breast cancer survivorship, and I like to make full use of it.
The other problem is, I’m pretty sick of having just these two servicable, but dull brazierres to choose from. I long for the black and cream colored lace I bought at Soma during a shopping spree with Iona last Thanksgiving. I sorely miss the cute pink racer-back that snaps in front and works great under tank tops. I sigh and shrug at department story manikins in their tempting underwire fashions with the pretty matching panties. I don’t even think about trying things on anymore because the voice in my head says, "Not for me. Not for me."
But it's not as pitiful as it sounds. I'm probably just being lazy. I think it's time to sit down with a needle and thread and figure out how to do some custom alterations to my undergarments. I'm developing a plan for fast application of easy-exit pockets. If it works out, I can buy and wear any bra I choose.I’ll still be able to bring Phyllis out at parties, but I won’t have to worry about random peek-a-boos. I won’t have to worry about her drifting over to the center of my chest, and I won’t have to worry about her sticking to my skin. She soaks up my body heat nicely after a few minutes, but when I first tuck her in, she’s always bitingly cold.
And there are hygienic concerns. I mean, really. What if I get sweaty? How often should I wash her? What should I use? Dish soap? Woollite? What about my lotion, my underarm deodorant, my perfume? These things might have a degrading effect over the long term. I don’t remember if she came with care instructions. If she did, I’ve discarded them by now. Or, they’re tucked in a storage shed twelve thousand miles from here.
I don’t even know what she’s made of.
The inside substance reminds me of silly putty, but softer. It reminds me of jello, but firmer. It reminds me of memory foam, but it’s not as firm as that. Overall, Phyllis seems very fragile and delicate. The outer surface, which appears to be responsible for holding the whole thing together and creating it’s pleasing shape, is nothing more that a clear plastic sheet several times thinner than a Ziplock bag. It’s more like the free bags you peel off the staticky roll in the produce aisle. I try to re-use those bags, but they just don’t seem up to the task of constant occupation. I use Phyllis almost every day!
What is going to become of her?She’s already starting to change. When I first got her, all her surfaces were smooth. Now, on her back side (which is my problem area too,) she’s developed some unsavory bumps. Multiple air pockets have formed between her pinkish bulk and the transparent sheet of her skin. At first these bubbles were small and pretty evenly distributed, but they’ve started to merge. Now there’s one big blister the size of a quarter, where the casing has completely separated itself from the filling. It’s driving me nuts. I want to prick it with a pin and force the extra air out. Everyone I talk to says this is a bad idea. But when I show it to them, they can understand the temptation.
I wonder what would happen if I popped it? Could I make a little round hole in the plastic without damaging the integrity of the whole thing. Would the surface start to rip? Would the inside start to squeeze out like toothpaste? Would a little dot of superglue save it? Would it need a Band-aid?Thank goodness the bubble has formed on the back side. If it somehow moved to the front, and settled into the center, the results would be devastating. My adorable little nipple would end up looking like the empty reservoir at the tip of a french letter. Forgive me for the U.K. euphemism. I cannot bring my self to write the C-word. (If you don’t know the phrase, or for a fascinating historical account, go to http://en.wikipedia.org/wiki/French_letter) I cannot bring myself to write the word, because the very idea of such an allusion turns my stomach.
What would I do if this happened? Disgust at one's own prosthesis is not quite close enough to home to be called self-loathing, but it's in the neighborhood. I’ve got enough body-image issues to deal with since my surgery. If that air pocket bubbles up under my nipple, I’ll settle for a gym sock stuffed C-cup. Phyllis would be in the trash faster than you can blink.
Like I said at the beginning, I love Phyllis. But, sometimes love just isn’t enough.
*I first typed the word “off” in the third paragraph as a way to say “not quite right.” I laughed at the double meaning when I re-read it. Something certainly is "off" when it comes to my chest, and we know exactly what it is! Looking the word up in the Thinkmap Visual Thesaurus (http://www.visualthesaurus.com/) that my sweetheart recently bought us a subscription for, I found that almost all the definitions for the word “off” seem strangely accurate in this context.
a. Not in operation or operational
b. Below a satisfactory level
c. In an unpalatable state
d. Not performing or scheduled for duties
And my favorite:
e. Not plugged in or connected to a power source.
Saturday, November 1, 2008
Not Over Yet
I seem to have stopped writing regular blog entries.
Last week I told myself I was just busy, but it's not really true.
I think I've just run out of things to write. I'm sick of writing about having cancer. I'm sick of being a cancer survivor. I'm sick of remembering how hard July and August were this year, and I'm sick of noticing what is still hard now that it is Novemeber. I'm so sick of pink ribbons that I'm ready to scream when I see them.
As far as the other (lesser) whammy, I've made one serious attempt to get a part time job, and haven't had any response from the company. I'm still living off my savings and feel a little guilty about that. Maybe I should be out there job hunting, but I really don't want to.
I still feel like there's lots more to this adventure that I haven't shared here. I really want this to be a complete account. So, soon, I'll have to buckle down and tell you more about:
1. the whole struggle with finding a lawyer who would talk to me about how I got fired
2. the struggle with trying to get unemployment payments and why I finally gave up
3. the struggle to get short term disability payments and why I finally gave up
4. how weird it is to explore romantic intimacy in my post-mastectomy body
5. why I'm still crying in the mornings
6. the rest of the story about biopsy #1
7. what my physical therapist said about how my ribs stick out of my chest and
8. my current dilema about more surgery.
But I don't want to write about it today. Today I want to go buy a hook and some yarn so I can crochet a hat for C. I want to go on a long hike somewhere beautiful. I want to curl up in the backyard hammock with my sweetie and pretend we don't have anything serious that we ought to be talking about. I want to figure out what to do about my hair so that I can look cute tonight because I know we're going to run into freinds I haven't seen in years. I want to eat the chicken salad I made yesterday with raisins, cucumbers, apple, red onion, yoghurt, mayonaise and (of course) chicken.
I don't want to write about cancer and joblessness any more than I wanted to get cancer and become jobless in the first place.
And it seems to me, that no one in their right mind would want to read about such things anyway. Go have a nice Saturday. That's what I'm going to do.
Last week I told myself I was just busy, but it's not really true.
I think I've just run out of things to write. I'm sick of writing about having cancer. I'm sick of being a cancer survivor. I'm sick of remembering how hard July and August were this year, and I'm sick of noticing what is still hard now that it is Novemeber. I'm so sick of pink ribbons that I'm ready to scream when I see them.
As far as the other (lesser) whammy, I've made one serious attempt to get a part time job, and haven't had any response from the company. I'm still living off my savings and feel a little guilty about that. Maybe I should be out there job hunting, but I really don't want to.
I still feel like there's lots more to this adventure that I haven't shared here. I really want this to be a complete account. So, soon, I'll have to buckle down and tell you more about:
1. the whole struggle with finding a lawyer who would talk to me about how I got fired
2. the struggle with trying to get unemployment payments and why I finally gave up
3. the struggle to get short term disability payments and why I finally gave up
4. how weird it is to explore romantic intimacy in my post-mastectomy body
5. why I'm still crying in the mornings
6. the rest of the story about biopsy #1
7. what my physical therapist said about how my ribs stick out of my chest and
8. my current dilema about more surgery.
But I don't want to write about it today. Today I want to go buy a hook and some yarn so I can crochet a hat for C. I want to go on a long hike somewhere beautiful. I want to curl up in the backyard hammock with my sweetie and pretend we don't have anything serious that we ought to be talking about. I want to figure out what to do about my hair so that I can look cute tonight because I know we're going to run into freinds I haven't seen in years. I want to eat the chicken salad I made yesterday with raisins, cucumbers, apple, red onion, yoghurt, mayonaise and (of course) chicken.
I don't want to write about cancer and joblessness any more than I wanted to get cancer and become jobless in the first place.
And it seems to me, that no one in their right mind would want to read about such things anyway. Go have a nice Saturday. That's what I'm going to do.
Friday, October 24, 2008
The Beginning of the End
I got a letter from my uncle in Hawaii yesterday. One of my favorite letters of all time came from Uncle G a long time ago. I don’t remember what it said. I must have been about thirteen. It came in a plain white business envelope. On the front, next to my name, he had drawn a big oval. Standing next to the oval was a little man, combing his hair. He was standing with his back to me. But Uncle G. had drawn the front of him inside the oval, so it was clear that the oval-shape was meant to be a mirror. I was so impressed by how he’d done this, drawn the same person in the same pose, facing two different directions. The back of the envelope was even better.
There was the oval again, in the exact same place as on the front. There was the little man inside the mirror, in the same comb-raised-to-head position as on the front. But this time, he was only looking out of the mirror, not standing beside it. Beside the mirror, and above it and all around it, Uncle G had drawn ghosts and ghouls, floating curiously and peering in at the human on the other side. It was creepy, and thought provoking. I loved it.
Last night, C. showed me her jewelry. She has it divided into two categories; things she wears and things she doesn’t. The “wears” category was filled with things that radiate beauty and taste, just like C. does. The “doesn’t” category had a little more variety, but not much. There was a pair of gold and green earrings that made me think of pine needles. There was a silver chain with a heart-shaped pendant and a miniature mistrel player that she wore throughout high school. My favorite was a tiny gold pendant shaped like a songbird in flight. It had been a gift. She got it when she graduated eighth-grade.
Eighth-grade! My goodness. I can’t imagine.
I saved only two things from my childhood; a home-made teddy bear and a worn-out book of fairy-tales. They are so precious to me that I will probably never get rid of them. But that’s all. Everything else, every other physical possession I own, must be both beautiful and useful, or it goes to Goodwill. “Might be useful someday" just doesn’t cut it in my book. If I’m not using it now, then it’s not useful, and it goes. I guess that’s why the book and the bear escape my periodic purges. I still read the stories, I still sleep with Teddy when I’m scared and alone.
If I was more sentimental about stuff, I might have saved more things. If I didn’t abhor clutter I might own stacks of memorabilia. If I hadn’t moved so many times, my closets might be filled with boxes of things that make me smile and remember happy days. In this alternate reality where I value meaning over purpose, you can bet I would still have that letter from my uncle. At least, I would still have the envelope it came in.
That’s a long introduction. I’m really rambling this morning. I have a headache. I’m sure it’s because I ate most of an angel food cake for supper last night. Then, for dessert, I ate the rest of it. To make it a meal, I topped it with plain, sugar-free, non-fat, organic yoghurt and fresh strawberries, so it seemed almost healthy. For dessert, I just ate cake.
What I really want to write about this morning is privacy, and how little of it I have.
Uncle G says he's enjoying my blog. It's so funny to hear this from people. Of course, it makes sense that he reads it sometimes. I'm sure I gave him the address myself. But, it never occurs to me that he might be reading it. It never occurs to me that anyone is reading it unless they tell me, and then I usually forget. I probably couldn't keep writing if I really thought about everyone out there whom these words might reach.
He wrote, "I've been following your health-saga as closely as I can from my perch here in the middle of the Pacific, thanks to your fantastic blog!"
He wrote, "It's very interesting reading about your thoughts and feelings at this time in your life."
He wrote, "I have to shake my head at your generations's openness about your lives. Can you imagine Grandma's generation sharing such intimate details of their lives with so many people?"
I have to admit, no I can't. I can't imagine my grandmother sharing such intimate details of her life with anyone at all. Why do I do it? It really does seem to be a generational thing. Why are we twenty and thrirty-somethings shameless enough to turn ourselves inside out for public inspection? Why are we narcissistic enough to think that anyone would want to look?
I've been thinking a lot about generational differences lately. My current romantic interest and I reach out to each other across a distance of fourteen years. It's weird. I ask my self if I can ever really understand and know intimately someone who can remember the day Kennedy was shot, whose childhood wasn't fraught with muppets, who has been a full-grown adult for exactly twice as many years as I have? And, as importantly, will I ever really be understood in return?
I watched the first half of "Guess Who's Coming To Dinner" last night. I haven't watched it since I was old enough to understand what's going on. Even thought I know what's coming, I'm shocked to see Katherine Hepburn's loving, liberal, well-educated character break out in a cold sweat as she realizes her daughter intends to marry this man. This man is, of course, the almost unbearably dignified and respectable Sidney Poitier playing an internationally admired medical doctor, author, and humanitarian.
What makes his uprightness bearable is the abandon with which he shows his character to be madly in love with the sparklingly oblivious girl, Joey. His boy-swoons are the final touch that solidifies the first three words of this movie's theme. He is perfect, and yet.
And yet, they can't see him marrying his daughter. They can't see him because he's so different from them. They can't see him because his background, his family, his experiences are so completely alien to theirs.
I think in my grandparent's generation, there were more shortcuts to intimacy. If you stayed within your own narrow group, you didn't need to ask probing questions or open yourself up to unprotected scrutiny. If you and another person shared the same background of race, class, education and culture you could make a lot of (mostly correct) assumptions. Of course, for married couples, there was the inevitable gulf between male and female perspectives. But that one was easily dealt with. Father knew best and women adjusted their ideas, or at least their actions, accordingly.
Despite certain politicians' myopic nostalgia for that world, it's not the one we live in anymore, and my generation knows it. Maybe this is what inspires our unabashed self-exposure. We want to be seen and understood, not just by the people who share a common history with us, and can thus imagine pretty accurately what's going on inside us. We want to be seen by everyone.
As a white girl who grew up poor but middle class in a liberal single-parent family just over the southern edge of the East Coast, I want to be understood by the Armani-suited man I met at the coffee shop whose parents emigrated from India in 1969 and still practice medicine together in his home town of San Diego. I want to be understood by the red-headed redneck drinking whiskey from a bottle at a tailgate party on the frozen surface of lake whose name sounds like ducks-in-a-keg. I want to be understood by the 8 year old girl in Santa Fe whose born-again christian parents think she has a sinful nature and by the brawny ex-football coach who lives on a sailboat with his dog and by the super-model-pretty Kenyan woman who grew up in boarding school and drives four hours each way to get her hair done.
And I want to understand them back.
I can't enjoy either the miracle of being understood, unless I'm generously and courageously honest. And setting an example of how to do so, increases the chances that other people will do it too.
So that's the "why," but where's the "how?" How is it we have the guts to risk public ridicule and invite private distain? How do we garner the nerve to stand at the edge of our keyboards, tossing our doubts and fears into the pool of public knowlege? How dare we boast about our happiness when others are suffering and whine about our failures when we know we brought them on ourselves?
I don't know. Is it like jumping off a cliff; all our friends are doing it?
I started blogging because my loved ones had a desire and a right to know what was happening in my unemployed, cancer-obsessed life, and I was too tired to call them back or write to them individually. I kept at it because I want other cancer patients to be able to learn from my experience, and maybe have a better one. I wrote intimate and personal things because I saw a need for it. Most of the literature on breast cancer is dry. Lots of it is funny. Some of it is honest. Once in a while someone admits how wrenching it is to rehearse the words "ductal carcinoma" while dialing your mom's phone number. But, nobody I found would discuss the sickening sight of your own bloody tumor scraps laid out on a glass plate or the practical details of finding the right-sized prosthesis.
I was able to do it because after that double whammy day, I felt like I didn't have anything else to loose. Also, cancer threw my precious-treasure nature into sudden stark relief. If my own life was so valuable that I was terrified of losing it and hell-bent to keep it, well then, there must not be anything too ridiculous or embarrassing about it. This attitude keeps getting stronger as you, my mysterious and multiple readers, keep telling me how grateful you are that I have spared modesty and shame to bring you the real story of these last few months in my life.
But, this post is only slightly related to getting fired and having cancer. It's mostly about cake and Sidney Poitier and my uncle in Hawaii. It's about muppets and dating and gold pendants. It's about ghosts and teddy bears and a generation of bloggers.
When my mom was staying with me in California, we saw Mama Mia at the theatre with a bunch of my friends. We sighed at the scenery, laughed at the boys dancing in flippers, groaned at Peirce Brosnan's voice, sang along with Meryl Steep, and threw popcorn at each other. It was the best 90 minutes I'd had since the first full day after my diagnosis. It was the only 90 minutes I'd had where I didn't think about the fact that I had cancer; not even once.
Look at me now! I think about all kinds of things that don't have anything to do with cancer!
This post is similar to the one where I talk about going running for the first time. On that day I finally felt like I had my body back. Today, I finally feel like I have my mind back. Someday soon, I won't have any tears left to cry when I look at my naked chest in the mirror, and then I'll know I have my heart back too.
And then, when I have written everything useful I can think of relating my doublewhammy adventure, and I'm all moved in to my new post-crisis life, I will end this blog.
But not just yet.
P.S. I lifted "fraught with muppets" off a blog called Momapop. Anyone who grew up with Sesame Street, Fraggle Rock, the Muppet Movies and, my personal favorite, Pigs in Space, should understand the charm, threat, and accuracy of this phrase. I couldn't resist it.
There was the oval again, in the exact same place as on the front. There was the little man inside the mirror, in the same comb-raised-to-head position as on the front. But this time, he was only looking out of the mirror, not standing beside it. Beside the mirror, and above it and all around it, Uncle G had drawn ghosts and ghouls, floating curiously and peering in at the human on the other side. It was creepy, and thought provoking. I loved it.
Last night, C. showed me her jewelry. She has it divided into two categories; things she wears and things she doesn’t. The “wears” category was filled with things that radiate beauty and taste, just like C. does. The “doesn’t” category had a little more variety, but not much. There was a pair of gold and green earrings that made me think of pine needles. There was a silver chain with a heart-shaped pendant and a miniature mistrel player that she wore throughout high school. My favorite was a tiny gold pendant shaped like a songbird in flight. It had been a gift. She got it when she graduated eighth-grade.
Eighth-grade! My goodness. I can’t imagine.
I saved only two things from my childhood; a home-made teddy bear and a worn-out book of fairy-tales. They are so precious to me that I will probably never get rid of them. But that’s all. Everything else, every other physical possession I own, must be both beautiful and useful, or it goes to Goodwill. “Might be useful someday" just doesn’t cut it in my book. If I’m not using it now, then it’s not useful, and it goes. I guess that’s why the book and the bear escape my periodic purges. I still read the stories, I still sleep with Teddy when I’m scared and alone.
If I was more sentimental about stuff, I might have saved more things. If I didn’t abhor clutter I might own stacks of memorabilia. If I hadn’t moved so many times, my closets might be filled with boxes of things that make me smile and remember happy days. In this alternate reality where I value meaning over purpose, you can bet I would still have that letter from my uncle. At least, I would still have the envelope it came in.
That’s a long introduction. I’m really rambling this morning. I have a headache. I’m sure it’s because I ate most of an angel food cake for supper last night. Then, for dessert, I ate the rest of it. To make it a meal, I topped it with plain, sugar-free, non-fat, organic yoghurt and fresh strawberries, so it seemed almost healthy. For dessert, I just ate cake.
What I really want to write about this morning is privacy, and how little of it I have.
Uncle G says he's enjoying my blog. It's so funny to hear this from people. Of course, it makes sense that he reads it sometimes. I'm sure I gave him the address myself. But, it never occurs to me that he might be reading it. It never occurs to me that anyone is reading it unless they tell me, and then I usually forget. I probably couldn't keep writing if I really thought about everyone out there whom these words might reach.
He wrote, "I've been following your health-saga as closely as I can from my perch here in the middle of the Pacific, thanks to your fantastic blog!"
He wrote, "It's very interesting reading about your thoughts and feelings at this time in your life."
He wrote, "I have to shake my head at your generations's openness about your lives. Can you imagine Grandma's generation sharing such intimate details of their lives with so many people?"
I have to admit, no I can't. I can't imagine my grandmother sharing such intimate details of her life with anyone at all. Why do I do it? It really does seem to be a generational thing. Why are we twenty and thrirty-somethings shameless enough to turn ourselves inside out for public inspection? Why are we narcissistic enough to think that anyone would want to look?
I've been thinking a lot about generational differences lately. My current romantic interest and I reach out to each other across a distance of fourteen years. It's weird. I ask my self if I can ever really understand and know intimately someone who can remember the day Kennedy was shot, whose childhood wasn't fraught with muppets, who has been a full-grown adult for exactly twice as many years as I have? And, as importantly, will I ever really be understood in return?
I watched the first half of "Guess Who's Coming To Dinner" last night. I haven't watched it since I was old enough to understand what's going on. Even thought I know what's coming, I'm shocked to see Katherine Hepburn's loving, liberal, well-educated character break out in a cold sweat as she realizes her daughter intends to marry this man. This man is, of course, the almost unbearably dignified and respectable Sidney Poitier playing an internationally admired medical doctor, author, and humanitarian.
What makes his uprightness bearable is the abandon with which he shows his character to be madly in love with the sparklingly oblivious girl, Joey. His boy-swoons are the final touch that solidifies the first three words of this movie's theme. He is perfect, and yet.
And yet, they can't see him marrying his daughter. They can't see him because he's so different from them. They can't see him because his background, his family, his experiences are so completely alien to theirs.
I think in my grandparent's generation, there were more shortcuts to intimacy. If you stayed within your own narrow group, you didn't need to ask probing questions or open yourself up to unprotected scrutiny. If you and another person shared the same background of race, class, education and culture you could make a lot of (mostly correct) assumptions. Of course, for married couples, there was the inevitable gulf between male and female perspectives. But that one was easily dealt with. Father knew best and women adjusted their ideas, or at least their actions, accordingly.
Despite certain politicians' myopic nostalgia for that world, it's not the one we live in anymore, and my generation knows it. Maybe this is what inspires our unabashed self-exposure. We want to be seen and understood, not just by the people who share a common history with us, and can thus imagine pretty accurately what's going on inside us. We want to be seen by everyone.
As a white girl who grew up poor but middle class in a liberal single-parent family just over the southern edge of the East Coast, I want to be understood by the Armani-suited man I met at the coffee shop whose parents emigrated from India in 1969 and still practice medicine together in his home town of San Diego. I want to be understood by the red-headed redneck drinking whiskey from a bottle at a tailgate party on the frozen surface of lake whose name sounds like ducks-in-a-keg. I want to be understood by the 8 year old girl in Santa Fe whose born-again christian parents think she has a sinful nature and by the brawny ex-football coach who lives on a sailboat with his dog and by the super-model-pretty Kenyan woman who grew up in boarding school and drives four hours each way to get her hair done.
And I want to understand them back.
I can't enjoy either the miracle of being understood, unless I'm generously and courageously honest. And setting an example of how to do so, increases the chances that other people will do it too.
So that's the "why," but where's the "how?" How is it we have the guts to risk public ridicule and invite private distain? How do we garner the nerve to stand at the edge of our keyboards, tossing our doubts and fears into the pool of public knowlege? How dare we boast about our happiness when others are suffering and whine about our failures when we know we brought them on ourselves?
I don't know. Is it like jumping off a cliff; all our friends are doing it?
I started blogging because my loved ones had a desire and a right to know what was happening in my unemployed, cancer-obsessed life, and I was too tired to call them back or write to them individually. I kept at it because I want other cancer patients to be able to learn from my experience, and maybe have a better one. I wrote intimate and personal things because I saw a need for it. Most of the literature on breast cancer is dry. Lots of it is funny. Some of it is honest. Once in a while someone admits how wrenching it is to rehearse the words "ductal carcinoma" while dialing your mom's phone number. But, nobody I found would discuss the sickening sight of your own bloody tumor scraps laid out on a glass plate or the practical details of finding the right-sized prosthesis.
I was able to do it because after that double whammy day, I felt like I didn't have anything else to loose. Also, cancer threw my precious-treasure nature into sudden stark relief. If my own life was so valuable that I was terrified of losing it and hell-bent to keep it, well then, there must not be anything too ridiculous or embarrassing about it. This attitude keeps getting stronger as you, my mysterious and multiple readers, keep telling me how grateful you are that I have spared modesty and shame to bring you the real story of these last few months in my life.
But, this post is only slightly related to getting fired and having cancer. It's mostly about cake and Sidney Poitier and my uncle in Hawaii. It's about muppets and dating and gold pendants. It's about ghosts and teddy bears and a generation of bloggers.
When my mom was staying with me in California, we saw Mama Mia at the theatre with a bunch of my friends. We sighed at the scenery, laughed at the boys dancing in flippers, groaned at Peirce Brosnan's voice, sang along with Meryl Steep, and threw popcorn at each other. It was the best 90 minutes I'd had since the first full day after my diagnosis. It was the only 90 minutes I'd had where I didn't think about the fact that I had cancer; not even once.
Look at me now! I think about all kinds of things that don't have anything to do with cancer!
This post is similar to the one where I talk about going running for the first time. On that day I finally felt like I had my body back. Today, I finally feel like I have my mind back. Someday soon, I won't have any tears left to cry when I look at my naked chest in the mirror, and then I'll know I have my heart back too.
And then, when I have written everything useful I can think of relating my doublewhammy adventure, and I'm all moved in to my new post-crisis life, I will end this blog.
But not just yet.
P.S. I lifted "fraught with muppets" off a blog called Momapop. Anyone who grew up with Sesame Street, Fraggle Rock, the Muppet Movies and, my personal favorite, Pigs in Space, should understand the charm, threat, and accuracy of this phrase. I couldn't resist it.
Tuesday, October 21, 2008
What I've been doing
Good Morning!
Gosh, I don't know how an unemployed person can be so busy. I haven't posted lately because I've been working on...
1. Applying for a part-time medical writing job. Applicants can live anywhere in the country. If I get the job, they will fly me to seminars where I will listen to reports on clinical studies and other health related information. Then, I get to go home and write up summaries. With my drug-selling background and hobby of writing, it's a good fit. Even better, most of the seminars will be in Maryland...very close to where my mom, sister and grandma live.
2. Beginning a fundraising project for a modern dance company here in Denver. They are just fabulous. Check them out at http://www.kimrobardsdance.org/.
3. Finishing up some articles I've written lately, and fishing around to see if I can actually get them published somewhere.
Those are just the main projects from the last few days. It seems like I've got a hundered other little things on my mind. I remember when I used to read the personal ads on craiglist...there were alwasy people on-line saying they were bored. I just can't imagine. There is so much to do!
Aside from work-type activities, I'm also having a very good time:
1. Hanging out with C. whenever she can find a littel pocket of time between her intense work and school schedule. Sunday we strolled through the Botanic Gardens, which are only a few blocks from her house. Beautiful!
2. Reconnecting with old friends, most of whom I haven't really seen or talked to much for 5 years or more. So much fun.
3. Exploring a significant spark with an old flame. I'll write more about this in it's own post. Post-mastectomy romance is a topic that really deserves it's own spotlight in this blog.
So, I'm sorry I haven't written much lately. This is what I've been up to, if you're curious.
I'm sure I'll write more soon.
Gosh, I don't know how an unemployed person can be so busy. I haven't posted lately because I've been working on...
1. Applying for a part-time medical writing job. Applicants can live anywhere in the country. If I get the job, they will fly me to seminars where I will listen to reports on clinical studies and other health related information. Then, I get to go home and write up summaries. With my drug-selling background and hobby of writing, it's a good fit. Even better, most of the seminars will be in Maryland...very close to where my mom, sister and grandma live.
2. Beginning a fundraising project for a modern dance company here in Denver. They are just fabulous. Check them out at http://www.kimrobardsdance.org/.
3. Finishing up some articles I've written lately, and fishing around to see if I can actually get them published somewhere.
Those are just the main projects from the last few days. It seems like I've got a hundered other little things on my mind. I remember when I used to read the personal ads on craiglist...there were alwasy people on-line saying they were bored. I just can't imagine. There is so much to do!
Aside from work-type activities, I'm also having a very good time:
1. Hanging out with C. whenever she can find a littel pocket of time between her intense work and school schedule. Sunday we strolled through the Botanic Gardens, which are only a few blocks from her house. Beautiful!
2. Reconnecting with old friends, most of whom I haven't really seen or talked to much for 5 years or more. So much fun.
3. Exploring a significant spark with an old flame. I'll write more about this in it's own post. Post-mastectomy romance is a topic that really deserves it's own spotlight in this blog.
So, I'm sorry I haven't written much lately. This is what I've been up to, if you're curious.
I'm sure I'll write more soon.
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