One of the things I did, when I found out that B. had breast cancer, was take a basket into K's study and fill it up with books. They are K's books, not mine, but I recognized a lot of them. I pulled all the ones that I'd read and enjoyed once upon a time, even if I couldn't remember much about what happened in them. I took these over to B.'s house and let her choose the ones she thought might be interesting and upbeat.
In some ways, having cancer can be a real good time. For instance, it's a real good time to catch up on your reading. With surgery to heal from, and chemo knocking you on your ass, and all those overwhelming, terrifying feelings that make it hard to get out of bed in the morning, it's no problem fitting in a chapter or two every day.
I think I read more books last July than I had during the entire year of 2007. Maybe that's why I started writing. When you surround yourself with books it starts to seem like everybody is writing; like writing is the only thing really worth doing. Also, suddenly, I had the time. And a topic.
At first, I only wrote here, in my Double Whammy Diary. But later, I wrote in a journal too. I started setting aside 3 hours every weekday, just for writing. Most of what I write is garbage, just a step above word salad. Wilted word salad. I don't really know why I'm doing it. It feels good. It feels important. It feels like an act of faith that someday something good might come out of my hours at the keyboard. I might not recognize it if is ever does. I guess that's okay. There might be something good coming out of it now. I really don't know.
I told B. about these daily dates and she loaned me a book about writing. It is by Anne Lamott, whose work I've never read. The title is Bird by Bird. She says a lot of good things that I like to hear. She says to keep writing, even if you never get anything published. She says to keep writing even if no one ever reads your work. She says to keep writing even if you are terrible at it. I like this kind of encouragement.
But when she gets to the chapter about characters she starts to loose me. Maybe it doesn't matter, because I don't really want to write fiction and I don't need to worry about inventing characters. But I think what she said represents a world view that swamps us all, whether we are real live people, or a collection of words on a page.
Here is what she writes:
...you are probably going to have to let bad things happen to some of the characters you love or you won't have much of a story. Bad things happen to good characters, because our actions have consequences, and we do not all behave perfectly all the time. As soon as you start protecting your characters from the ramifications of their less-than-lofty behavior, your story will start to feel flat and pointless...
I think there was a time when I felt like that, that mostly the world lines up in an orderly stream of cause and effect. But what "less than lofty behaviour" resulted in B. getting breast cancer? What action of mine resulted in the consequence of having my right breast removed? This strikes me as a silly childish way of thinking. Isn't it time we all grew up and faced the fact that there is no Big Daddy up in the sky ready to take us out for ice cream if we are good girls and boys, or taking off his belt if we are bad. Things just happen. Bad things happen to good people and if there were such a thing as bad people, good things would often be their lot.
This may not be comforting. But it's liberating. When we finally get this fact...that we are already good enough, and that working to be better won't protect us...we might be able to relax, and finally enjoy all the blessings that are already ours.
Looking out the study window, I can see that it is a beautiful day outside. On the other side of the street, my rude and horrible neighbor can see the same beautiful day through her window. And I'm okay with that.
Monday, April 13, 2009
Friday, April 10, 2009
My Donation
Back in September, after a month of sending me letters and gifts in the mail everyday, C. had something even better delivered to my house...herself! I was healing from surgery and couldn't do too much. We stayed in and watched movies. We went for small outings in Los Osos when I had the energy. I was so happy to do things that didn't relate to having cancer. After a month of what felt like driving to appointments and procedures every other day, it was such a luxury to stay home, or in the neighborhood. We walked to the bakery, the coffee shop, the farmer's market. I don't think we drove into San Luis more than once that whole week.
When we did make that drive all the way into town, it was to go to the bookstore, of course. I don't remember what I bought at Barnes and Nobles that day. Trailrunner magazine? Spanish in 90 Days? I don't remember what C. bought either. But, we must have bought something because I very clearly remember standing in line behind her, waiting for my own turn at the check-out counter.
When it came, the young clerk asked me, had found everything I was looking for? I was happy to say that I had.
She asked me if I had a membership card. I didn't, but she let me use C.s card, which was nice.
Then she asked me, would I like to donate a dollar to breast cancer today? That's when I punched her in the face.
Well, no. Of course I didn't do that. But I felt like it for a moment. Not because I was angry or wanted to hurt her or anything. It was more like an automatic response to shock and surprise. It was like being in an old fashioned, slapstick cartoon. I felt like a bucket of cold water dropped on me suddenly from a atop a carefully propped door. I felt like I'd stepped on a rake and the handle just flew up and hit me in the face.
The surge of adrenaline flooding me at that moment moment was amazing. I could have scaled a building, or jumped over a river, or lifted a car. I could have done these things, maybe, if my entire right side hadn't been all wounded and sore.
I think this over reaction on my part was probably just do to the fact that I didn't want to think about breast cancer anymore. Finally, I had the luxury of NOT thinking about it. I was in pain and I was tired, but I was okay and I didn't have to think about it anymore! Until this young woman shoved it in my face without warning.
Also, I may have been irritated at her lazy and inaccurate grammar.
"Do you want to donate a dollar to breast cancer?"
"No thank you. I just donated my right tit to breast cancer. I think I've given enough for this year."
When we did make that drive all the way into town, it was to go to the bookstore, of course. I don't remember what I bought at Barnes and Nobles that day. Trailrunner magazine? Spanish in 90 Days? I don't remember what C. bought either. But, we must have bought something because I very clearly remember standing in line behind her, waiting for my own turn at the check-out counter.
When it came, the young clerk asked me, had found everything I was looking for? I was happy to say that I had.
She asked me if I had a membership card. I didn't, but she let me use C.s card, which was nice.
Then she asked me, would I like to donate a dollar to breast cancer today? That's when I punched her in the face.
Well, no. Of course I didn't do that. But I felt like it for a moment. Not because I was angry or wanted to hurt her or anything. It was more like an automatic response to shock and surprise. It was like being in an old fashioned, slapstick cartoon. I felt like a bucket of cold water dropped on me suddenly from a atop a carefully propped door. I felt like I'd stepped on a rake and the handle just flew up and hit me in the face.
The surge of adrenaline flooding me at that moment moment was amazing. I could have scaled a building, or jumped over a river, or lifted a car. I could have done these things, maybe, if my entire right side hadn't been all wounded and sore.
I think this over reaction on my part was probably just do to the fact that I didn't want to think about breast cancer anymore. Finally, I had the luxury of NOT thinking about it. I was in pain and I was tired, but I was okay and I didn't have to think about it anymore! Until this young woman shoved it in my face without warning.
Also, I may have been irritated at her lazy and inaccurate grammar.
"Do you want to donate a dollar to breast cancer?"
"No thank you. I just donated my right tit to breast cancer. I think I've given enough for this year."
Beneath Notice
I've gotten used to being naked in the gym locker room. I don't worry about shocking people with my breastlessness anymore. If it's convenient, I'll throw a towel over my right shoulder and let it hang casually across my scar. If I don't have a towel handy, or it is getting in the way...I don't worry about it anymore.
So, when we went to Idaho Springs for a soak, I didn't even think or blink about being naked among strangers there.
The hot pools carved into the cave floor are sex segregated. I don't know what they do on the men's side, but on the women's side, we float naked and steaming under dark, dripping stone. Unlike the gym, it's slow and calm in the caves. No one is in a hurry to get to yoga on time, or blow dry their hair before they have to be at work. We all just melt into the stone and wait for the water to work it's magic on us.
Sometimes we talk. To the friends that came with us. To women from elsewhere. I had a nice conversation with a woman from Peru. She told me about her middle eastern husband, How they'd been married years ago and split. Now they were trying to work it out again. Cultural differences, she said, were the problem. She asked about me, my life, my history. We talked about breast cancer and mastectomies. She hadn't even noticed mine. After I showed her she said, "You know, they do really amazing things with reconstruction these days and your insurance will cover it."
Later, K said, "She just doesnt' get it, does she?"
"No," I agreed, but then I wondered what "it" is.
What is she not getting? That I think I look okay? That I don't think I look so bad that I need to be stitched and sliced in order to look better? That a problem she didn't even notice until I pointed to it doesn't seem worth the trouble of fixing?
Later in the day, K. asked me if I feel good about my body. I told her that I didn't feel great, but I didn't feel awful either. Mostly I'm just glad to have one that works.
I also told her that since cancer, how I feel about my body seems sharply disconnected from how I feel about myself.
Thank god, because shortly after that a horribly unflattering photo of me showed up in the Daily Camera.
Once you decide advanced technology makes sense for changing the way you look, for instance, on your scarred and bony chest, where does that reasoning stop? In that photo, I was far too pale ... with one squinting eye, crooked yellow smile and a double chin. Should I make an appointment for an artificial tan? corrective lenses? tooth bleaching? facial liposuction?
Or should I just relax and realize that, probably, no one even noticed.
So, when we went to Idaho Springs for a soak, I didn't even think or blink about being naked among strangers there.
The hot pools carved into the cave floor are sex segregated. I don't know what they do on the men's side, but on the women's side, we float naked and steaming under dark, dripping stone. Unlike the gym, it's slow and calm in the caves. No one is in a hurry to get to yoga on time, or blow dry their hair before they have to be at work. We all just melt into the stone and wait for the water to work it's magic on us.
Sometimes we talk. To the friends that came with us. To women from elsewhere. I had a nice conversation with a woman from Peru. She told me about her middle eastern husband, How they'd been married years ago and split. Now they were trying to work it out again. Cultural differences, she said, were the problem. She asked about me, my life, my history. We talked about breast cancer and mastectomies. She hadn't even noticed mine. After I showed her she said, "You know, they do really amazing things with reconstruction these days and your insurance will cover it."
Later, K said, "She just doesnt' get it, does she?"
"No," I agreed, but then I wondered what "it" is.
What is she not getting? That I think I look okay? That I don't think I look so bad that I need to be stitched and sliced in order to look better? That a problem she didn't even notice until I pointed to it doesn't seem worth the trouble of fixing?
Later in the day, K. asked me if I feel good about my body. I told her that I didn't feel great, but I didn't feel awful either. Mostly I'm just glad to have one that works.
I also told her that since cancer, how I feel about my body seems sharply disconnected from how I feel about myself.
Thank god, because shortly after that a horribly unflattering photo of me showed up in the Daily Camera.
Once you decide advanced technology makes sense for changing the way you look, for instance, on your scarred and bony chest, where does that reasoning stop? In that photo, I was far too pale ... with one squinting eye, crooked yellow smile and a double chin. Should I make an appointment for an artificial tan? corrective lenses? tooth bleaching? facial liposuction?
Or should I just relax and realize that, probably, no one even noticed.
Wednesday, April 8, 2009
Every Day
My mom started a nature writer's club. If I wasn't far away, I would go to it. Thanks to the Internet...I can still enjoy it even though I'm not a part of it. I visit their blog. I read the books on their reading list.
The first book was Always, Rachel, a collection of letters exchanged between Rachel Carson and her close friend Dorothy Freeman. (I think that's her last name. I'll check on it later.) It's a fat volume, and some of it is tedious. It's not a good starter read if you are not already familiar with Ms. Carson. I think you'd have to be head over heels in love with her to find all these pages interesting. I like her, alright, but I don't really know her well enough yet to be in love with her...so I skim through the pages.
There are descriptions of their tidepooling adventures together, but also of the days they couldn't go because someone had a cold or the plumber was late. Of course, later on in the book, Rachel can't do much of anything because she's battling against cancer. It's sweet to read how Dorothy sent something to Rachel every day in the mail while she had cancer. It's also sad and strange, and tragically poetic that this woman who worked so hard to make the world safer for all of us, who dared to speak out about the dangers of our chemical lifestyle, would suffer so? I don't know the timing of her life exactly. Did she publish Silent Spring before she started to get sick? Was she researching how pesticides are crawling through the food chain while her own body was turning against her...or did the tumors come later? I don't know.
I don't even know about my own timing, my own body. When did my tumors start to grow? What gave me breast cancer? Was it living near the power plants? (There is one on each side of Los Osos.) Was it poison in the bay? (My own house was one of the polluters.) Was it a karmic kickback from my job as a drug pusher? (How long can you dole out medicine before you have to take some yourself?) I'll never know.
It really doesn't matter. Whats the point of knowing how I got cancer, unless it's going to help me avoid getting it again? Maybe Diablo Canyon and Morro Bay and Boehringer-Ingelheim caused my cancer, but I love the Central Coast and I plan to live there again.
Even if it means I'll live a shorter life, loose my other breast, chance chemo and radiation...I am moving back. Even if it means I have to work again as a pharmaceutical sales rep, I'll go.
I decided that last week, after being on the ground in San Luis Obispo County for less than 10 minutes. In the airport parking lot, surrounded by mostly cement, I remembered like a flood. "This is home. This is home."
I called K the next morning and told her so. I told her, "this is where we belong." And she said, "I think so too."
But we can't move just yet. There are lovely people living in my house, and they're not ready to go. There are a million things we need to do in our own lives to get ready, not the least of which is...find jobs in San Luis. So I'm back in Colorado for now. Wiping my runny nose on my layered sleeves and crouching by the roaring wood stove. Watching the white snow blanket the brown slopes. Relearning that one warm week in March does not mean winter's over in April.
Since I officially moved her on the first of the year, I've been happy with K, and happy to reconnect with friends. I've been happy to go running with Piper, and happy to eat at my favorite local restaurants.
But, I have not been happy to be living here, looking toward a long life here. I feel trapped between these brown mountains and these browner plains. I guess I used to be happy enough to live here...back in my twenties, before I'd walked those green hills, before I'd touched a surfboard or owned a sailboat. But happy enough doesn't feel like enough anymore.
How silly I've been since January, trying to settle in here, when I know my home is elsewhere.
My thought process had been: 1. K owns a house here in Boulder, and I don't own a house anywhere. 2. K has a job here in Boulder and I don't have a job anywhere. 3. K has a loving community of friends here in Boulder, and because I lived here from 1994 to 2002, so do I.
But I forgot it takes more than a house to make a home. I forgot that jobs are changeable and that community is larger than the town in which you live. I forgot that I don't have choose between the two biggest happinesses in my life. Karen and California needn't be mutually exclusive.
Having realized all this, and made that decision, I find myself newly delighted with Boulder. It's a lovely town and I have history here. I charmed anew by the bike path along the creek, and freshly awed by the mountain peaks.
I ran into an old friend at the post office yesterday. I would not have her phone number in my bicycle bag now if I hadn't come to live here. I wouldn't have eaten a pop-over at Breadworks on Saturday morning. I wouldn't have seen the snow on the Flatirons Sunday afternoon. A thousand small pleasures and insights are mine because I am here. I'm able to enjoy and notice them now that I've removed the life sentence from myself and my little family. I can be here now, because we don't have to stay.
It's like we are on sabbatical. What a nice opportunity...to stay for a while in Boulder.
And how convenient the timing is! We just happen to be here in the same window of time that my good friend C. has landed here. She's in Denver for a few years, working on her advanced degree. It's no small thing, a chance to stay close to a friend like C. She's as good a friend to me as Ms.Freeman was to Rachel Carson. When I had cancer C., like Dorothy, sent something in the mail. Every day.
The first book was Always, Rachel, a collection of letters exchanged between Rachel Carson and her close friend Dorothy Freeman. (I think that's her last name. I'll check on it later.) It's a fat volume, and some of it is tedious. It's not a good starter read if you are not already familiar with Ms. Carson. I think you'd have to be head over heels in love with her to find all these pages interesting. I like her, alright, but I don't really know her well enough yet to be in love with her...so I skim through the pages.
There are descriptions of their tidepooling adventures together, but also of the days they couldn't go because someone had a cold or the plumber was late. Of course, later on in the book, Rachel can't do much of anything because she's battling against cancer. It's sweet to read how Dorothy sent something to Rachel every day in the mail while she had cancer. It's also sad and strange, and tragically poetic that this woman who worked so hard to make the world safer for all of us, who dared to speak out about the dangers of our chemical lifestyle, would suffer so? I don't know the timing of her life exactly. Did she publish Silent Spring before she started to get sick? Was she researching how pesticides are crawling through the food chain while her own body was turning against her...or did the tumors come later? I don't know.
I don't even know about my own timing, my own body. When did my tumors start to grow? What gave me breast cancer? Was it living near the power plants? (There is one on each side of Los Osos.) Was it poison in the bay? (My own house was one of the polluters.) Was it a karmic kickback from my job as a drug pusher? (How long can you dole out medicine before you have to take some yourself?) I'll never know.
It really doesn't matter. Whats the point of knowing how I got cancer, unless it's going to help me avoid getting it again? Maybe Diablo Canyon and Morro Bay and Boehringer-Ingelheim caused my cancer, but I love the Central Coast and I plan to live there again.
Even if it means I'll live a shorter life, loose my other breast, chance chemo and radiation...I am moving back. Even if it means I have to work again as a pharmaceutical sales rep, I'll go.
I decided that last week, after being on the ground in San Luis Obispo County for less than 10 minutes. In the airport parking lot, surrounded by mostly cement, I remembered like a flood. "This is home. This is home."
I called K the next morning and told her so. I told her, "this is where we belong." And she said, "I think so too."
But we can't move just yet. There are lovely people living in my house, and they're not ready to go. There are a million things we need to do in our own lives to get ready, not the least of which is...find jobs in San Luis. So I'm back in Colorado for now. Wiping my runny nose on my layered sleeves and crouching by the roaring wood stove. Watching the white snow blanket the brown slopes. Relearning that one warm week in March does not mean winter's over in April.
Since I officially moved her on the first of the year, I've been happy with K, and happy to reconnect with friends. I've been happy to go running with Piper, and happy to eat at my favorite local restaurants.
But, I have not been happy to be living here, looking toward a long life here. I feel trapped between these brown mountains and these browner plains. I guess I used to be happy enough to live here...back in my twenties, before I'd walked those green hills, before I'd touched a surfboard or owned a sailboat. But happy enough doesn't feel like enough anymore.
How silly I've been since January, trying to settle in here, when I know my home is elsewhere.
My thought process had been: 1. K owns a house here in Boulder, and I don't own a house anywhere. 2. K has a job here in Boulder and I don't have a job anywhere. 3. K has a loving community of friends here in Boulder, and because I lived here from 1994 to 2002, so do I.
But I forgot it takes more than a house to make a home. I forgot that jobs are changeable and that community is larger than the town in which you live. I forgot that I don't have choose between the two biggest happinesses in my life. Karen and California needn't be mutually exclusive.
Having realized all this, and made that decision, I find myself newly delighted with Boulder. It's a lovely town and I have history here. I charmed anew by the bike path along the creek, and freshly awed by the mountain peaks.
I ran into an old friend at the post office yesterday. I would not have her phone number in my bicycle bag now if I hadn't come to live here. I wouldn't have eaten a pop-over at Breadworks on Saturday morning. I wouldn't have seen the snow on the Flatirons Sunday afternoon. A thousand small pleasures and insights are mine because I am here. I'm able to enjoy and notice them now that I've removed the life sentence from myself and my little family. I can be here now, because we don't have to stay.
It's like we are on sabbatical. What a nice opportunity...to stay for a while in Boulder.
And how convenient the timing is! We just happen to be here in the same window of time that my good friend C. has landed here. She's in Denver for a few years, working on her advanced degree. It's no small thing, a chance to stay close to a friend like C. She's as good a friend to me as Ms.Freeman was to Rachel Carson. When I had cancer C., like Dorothy, sent something in the mail. Every day.
Tuesday, April 7, 2009
Her Word
I went to see Dr. Rocco while I was home in California. It was nice to see her, and all their staff too. They are so sweet and friendly and I feel like I belong to them. They were there to help me when I needed it. I feel like they saved my life. Doesn't that make me theirs, in a way? They act like it. It's always a nice day when I have a visit at their office, which is an amazing thing to say, considering why I go there.
Dr. Rocco, as always, made time to sit and talk with me. We talked about how I was doing, but about how she is doing too. She still hopes to get on Oprah and talk about genetic testing. Her young daughter is still interested in becoming a chef. We talked about Liz, the Care Coordinator and why she was having a rough time lately. One of her favorite patients recently died.
We talked about what it was like having only one breast. What I told her was, basically, I don't really mind. I've gotten pretty used to it. If I wear a sports bra and a t-shirt, most people don't even notice. When I dress up to look pretty, plopping Phyllis into my bra means I look just great. Naked, I still feel attractive. Now, I feel interesting too.
This is where it surreal for me. Dr. Rocco, the woman whose words fell out of her mouth when I told her I might not have reconstruction, began to tell me how important it was that women consider the option I had taken. She talked about how painful and stressful reconstruction can be. She described how many surgeries it takes before women are really happy with the shape and appearance of their new breasts. She sighed over the great number of women who never end up really satisfied.
Now it was me with no words in my mouth. What should I say?
I didn't want to insult her or drive any kind of wedge between us by suggesting that this was pure opposite to the attitude she shared with me before my surgery. I still rely on her to keep me safe from cancer. I didn't want to sound accusing or critical of her. I don't FEEL accusing or critical of her. I worship her. I think she's done the absolute best for me that she possibly could. She is so smart, kind, generous, capable, educated and competent. She so obviously cares deeply for her patients and does her very best to see that they are thriving. The fact that she didn't offer me options other than immediate reconstruction has never changed my opinion of her, personally or professionally. It has always seemed to me like proof of how intense the whole culture of breast cancer treatment leans towards pushing the miracles of surgery.
To hear her now, espousing the importance of giving women the choice to forgo reconstruction, or to consider having in later, made my head reel. I was delighted. This was exactly what I hope all breast surgeons tell their patients. "Slow down. Take your time. You have choices. Reconstruction is a complicated, intensive process and not a process to be undertaken lightly."
But I also felt suspicious. At first I was suspicious of her. Did she really mean what she was saying, or was she just humoring me? Did she realize what a change this was from her previous approach? Was she entirely stable? Or, maybe I was the unstable one. Did I really remember correctly what had happened in this office 9 months ago? Had she really looked at me with shock and surprise when I asked about the possibility of NOT seeing a plastic surgeon? Maybe I had made up that story in my head.
The fact that I started questioning my own perception of reality at this point just illustrates how powerful the impulse is to trust a physician's thinking over you own. The pull is especially strong when you've already put yourself in her hands, and feel like your life depends on her good decisions. To doubt her then, is to worry. That's one thing, as a cancer patient, that I've done enough of this past year. I don't want to worry anymore. I want to trust her. I want to know I'm going to be okay as long as I'm in her care. If that means doubting my own memory of how things happened and who said what, so be it.
Except that I don't have the luxury of dismissing my own accounts as distorted over time...because I write it all down.
So I grew angry. Why hadn't she given me this kind of advice? Why had she assumed I would have immediate reconstruction and attempted to design my treatment plan accordingly? Why didn't she encourage me to be brave and face the personal growth that comes with losing a body part rather than push me to risk the the knife and needle.
And then it occurred to me that maybe I was the reason for her changed perspective. Maybe working with me had planted a seed that was blossoming now before me. Perhaps, because of the choice I made and the way I explained it, her future patients would feel encouraged and supported no matter which of the 3 post mastectomy options they chose. Now, later and never might now all be fine times for her patients to get new breasts built.
How proud I felt! I wanted to protect this vision of change, make sure it wasn't a fantasy. I wanted to ask her if she made a point of sharing this information with all her new patients. I wanted to ask her how she introduced the topic of reconstruction to women facing mastectomies. I wanted to know that she wasn't just talking this way to me, trying to make me feel better about not having a right breasts.
But, I didn't ask her. Again, I didn't want to insult her. I didn't want her to feel like I was judging her or doubting her. I can't risk making her mad at me. I still feel like I need her too much.
.
Dr. Rocco, as always, made time to sit and talk with me. We talked about how I was doing, but about how she is doing too. She still hopes to get on Oprah and talk about genetic testing. Her young daughter is still interested in becoming a chef. We talked about Liz, the Care Coordinator and why she was having a rough time lately. One of her favorite patients recently died.
We talked about what it was like having only one breast. What I told her was, basically, I don't really mind. I've gotten pretty used to it. If I wear a sports bra and a t-shirt, most people don't even notice. When I dress up to look pretty, plopping Phyllis into my bra means I look just great. Naked, I still feel attractive. Now, I feel interesting too.
This is where it surreal for me. Dr. Rocco, the woman whose words fell out of her mouth when I told her I might not have reconstruction, began to tell me how important it was that women consider the option I had taken. She talked about how painful and stressful reconstruction can be. She described how many surgeries it takes before women are really happy with the shape and appearance of their new breasts. She sighed over the great number of women who never end up really satisfied.
Now it was me with no words in my mouth. What should I say?
I didn't want to insult her or drive any kind of wedge between us by suggesting that this was pure opposite to the attitude she shared with me before my surgery. I still rely on her to keep me safe from cancer. I didn't want to sound accusing or critical of her. I don't FEEL accusing or critical of her. I worship her. I think she's done the absolute best for me that she possibly could. She is so smart, kind, generous, capable, educated and competent. She so obviously cares deeply for her patients and does her very best to see that they are thriving. The fact that she didn't offer me options other than immediate reconstruction has never changed my opinion of her, personally or professionally. It has always seemed to me like proof of how intense the whole culture of breast cancer treatment leans towards pushing the miracles of surgery.
To hear her now, espousing the importance of giving women the choice to forgo reconstruction, or to consider having in later, made my head reel. I was delighted. This was exactly what I hope all breast surgeons tell their patients. "Slow down. Take your time. You have choices. Reconstruction is a complicated, intensive process and not a process to be undertaken lightly."
But I also felt suspicious. At first I was suspicious of her. Did she really mean what she was saying, or was she just humoring me? Did she realize what a change this was from her previous approach? Was she entirely stable? Or, maybe I was the unstable one. Did I really remember correctly what had happened in this office 9 months ago? Had she really looked at me with shock and surprise when I asked about the possibility of NOT seeing a plastic surgeon? Maybe I had made up that story in my head.
The fact that I started questioning my own perception of reality at this point just illustrates how powerful the impulse is to trust a physician's thinking over you own. The pull is especially strong when you've already put yourself in her hands, and feel like your life depends on her good decisions. To doubt her then, is to worry. That's one thing, as a cancer patient, that I've done enough of this past year. I don't want to worry anymore. I want to trust her. I want to know I'm going to be okay as long as I'm in her care. If that means doubting my own memory of how things happened and who said what, so be it.
Except that I don't have the luxury of dismissing my own accounts as distorted over time...because I write it all down.
So I grew angry. Why hadn't she given me this kind of advice? Why had she assumed I would have immediate reconstruction and attempted to design my treatment plan accordingly? Why didn't she encourage me to be brave and face the personal growth that comes with losing a body part rather than push me to risk the the knife and needle.
And then it occurred to me that maybe I was the reason for her changed perspective. Maybe working with me had planted a seed that was blossoming now before me. Perhaps, because of the choice I made and the way I explained it, her future patients would feel encouraged and supported no matter which of the 3 post mastectomy options they chose. Now, later and never might now all be fine times for her patients to get new breasts built.
How proud I felt! I wanted to protect this vision of change, make sure it wasn't a fantasy. I wanted to ask her if she made a point of sharing this information with all her new patients. I wanted to ask her how she introduced the topic of reconstruction to women facing mastectomies. I wanted to know that she wasn't just talking this way to me, trying to make me feel better about not having a right breasts.
But, I didn't ask her. Again, I didn't want to insult her. I didn't want her to feel like I was judging her or doubting her. I can't risk making her mad at me. I still feel like I need her too much.
.
Monday, April 6, 2009
Ahoy Matey
It is still weird to just have one lonely breast inside my shirt. But, I am getting used to it. Now, when I am naked from the waist up and doing the kind of business-like things one tends to do when topless...trimming toe and fingernails, cleaning my ears, flossing my teeth...I sometimes catch a glimpse of myself in the bathroom mirror. I still look damaged, injured. But, it's also clear that I am fully recovered and there's something about that that makes me feel strong and happy. I look like I've lived through things. I look interesting.
I look like a pirate. My missing body piece invites a tale to be told. Swordfights! Crocodiles! Aargh!
I look like an Amazon. Which, to me, means that what I do with my body is more important than how it looks. (Which, of course, is always true of everyone, regardless of whether or not they believe it.) And how it looks is ... like I can do things with it. Shoot an arrow. Out run a horse.
I can't really do either of these things. Fit and well running humans CAN out-run a horse, I've read. But it takes about 20 miles before the two-leggers pull ahead. The longest I've ever run is fifteen. What that means is, with practice, I could outrun a horse.
Also, with practice, I could use a bow and arrow. K already has some. She and our freind A. had them out for target practice last weekend, while I was in California. Maybe I'll choose a 20 mile race to train for this year. And, maybe, after I've run it, I'll add "excel at archery" to my list of things to do.
In the meantime, I'll just enjoy feeling like a pirate. In my head I'll keep designing clothes that flatter and exentuate my asymetry, rather than conceal it. I'll keep laughing outloud when I imagine the shirts and dresses with an eye patch pattern across the chest.
.
I look like a pirate. My missing body piece invites a tale to be told. Swordfights! Crocodiles! Aargh!
I look like an Amazon. Which, to me, means that what I do with my body is more important than how it looks. (Which, of course, is always true of everyone, regardless of whether or not they believe it.) And how it looks is ... like I can do things with it. Shoot an arrow. Out run a horse.
I can't really do either of these things. Fit and well running humans CAN out-run a horse, I've read. But it takes about 20 miles before the two-leggers pull ahead. The longest I've ever run is fifteen. What that means is, with practice, I could outrun a horse.
Also, with practice, I could use a bow and arrow. K already has some. She and our freind A. had them out for target practice last weekend, while I was in California. Maybe I'll choose a 20 mile race to train for this year. And, maybe, after I've run it, I'll add "excel at archery" to my list of things to do.
In the meantime, I'll just enjoy feeling like a pirate. In my head I'll keep designing clothes that flatter and exentuate my asymetry, rather than conceal it. I'll keep laughing outloud when I imagine the shirts and dresses with an eye patch pattern across the chest.
.
Monday, February 23, 2009
My Name Is...
I've agreed to be a volunteer speaker for a breast cancer awareness organization that is starting up here in Colorado. The organization is called "Breast Friends." Their website is http://www.breastfriends.com/. Unlike alot of other BC groups, this one is focused not on the patient, but on their friends, family and their communities. The whole idea is, "no woman should have to face breast cancer alone."
Here's what their home page says:
Often, breast cancer patients, especially the newly diagnosed, are in the greatest emotional pain, but are the least able to ask for help. Breast Friends teaches the friends and family of cancer patients specific ways to offer support, helps them understand what the patient is going through, and suggests useful resources for the patient and her family.
Addressing a woman's cancer is a sensitive issue, but we all want to help. However, friends often worry about not doing it "right". As a result, time passes, and to avoid doing it "wrong," we often don't do anything at all. Then, more time passes, and by then we are too embarrassed to pick up the phone and make the call. The message of Breast Friends is that it's never too late to make contact and provide useful and appreciated support to those we love who are facing this terrible disease.
They already have material put together that they hand out to survivor-supports. I'll be incorporating that into my talk, along with some personal stories about being a survivor myself. I'm also reaching out to the survivors and supporters that I know, to ask their opinions on the topic. I'd like yours, reader, as well.
If you're a breast cancer suvivor/patient, what did your friends and family do that was useful and meaningful. What did you ask for and how did your community come through for you? What do you wish you had asked for, or wish you'd handled differently? Was there anything anyone did that was more of a hassle than a help?
If you're a supporter of a breast cancer survivor/patient, what have your struggles been? What has made it easier for you to reach out? What has made it difficult? What do you feel proud of? What do you wish you'd done differently?
Back when I had cancer (I LOVE being able to talk about that in the past tense) I was floored by the creativity and generosity with which my friends and family shared their love and support with me. I still feel like swimming in that wave of care and kindness made it almost worth the nightmare of being diagnosed. I don't just want every other cancer suvivor to experience the same kind of affection and thoughtfullness that I did, I want every other person on the planet to experience it. Of course, I expecially want women dealing with breast cancer to feel as loved and cherished as I did.
And yet, when a friend of mine was recently diagnosed with breast cancer, I totally froze up inside and didn't know what to do.
Here are the thoughts and feelings that make it hard for me to reach out to her.
I don't really know her all that well. I'm sure she has lots and lots of other freinds and family that are bombarding her with their offers of assistance. I'd probably just be bothering her if I called her. I don't really know what she's going through, or where she's struggling. If I call and make suggestions about how I can help, it will sound like I think I know better than she does what she needs. If I say, "I'll do anything you want!" that will sound totally insincere. If I say, "I'll help out where I can," that sounds like I don't really want to be there for her. If I say, "let me know what I can do," then it's like I'm making it her responsibility to figure out what I can do for her. She's probably feeling overwhelmed already, I don't want her to feel like telling me how I can help her is one more thing she needs to add to her to-do list. She probably needs lots of rest and down time. If I call her I might be inturrupting her. If I send her an email, she'll feel like she needs to be polite and answer it. If I ask her when her appointments are, it will just sound like I'm being nosy. Everybody is talking about breast cancer all the time anymore. It's like it's our nation's new hip and cool disease. I don't want her to think I'm just jumping on some bandwagon and trying to be cool by volunteering to help some poor breast cancer patient.
Yes, I have all these thoughts and fears, even thought I'm a breast cancer survivor myself. Maybe I'm just a paranoid freak. But, I figure if I am having these hesitations, other people must be having them too. I hate to think of anyone going through what I went through this summer without a strong support network holding them up.
And, compared to what most breast cancer patients go through, what I went through this summer was easy-peasy-pie. I didn't have chemo, or radiation, or hormone-therapy. My health insurance covered the bulk of the cost of all my charges without a hitch. I didn't need to travel far for any of my diagnostic or treatment appointments. I healed up without complications. My surgeon, physical therapist, oncologist and all their staff were dedicated angels who treated me with respect and affection.
Despite all these blessings, the whole adventure was a bizarre nightmarish labyrinth peppered with surprise sinkholes of despair. I needed the buoyancy of my community's care, and I needed it bad. Women whose treatments are less swift and sure than mine was must need it even worse. I hope volunteering to do these talks can help them get it even better.
I'm also looking forward to the talk because I absolutely love getting up in front of big groups of people and telling them what I think about things. (I guess that's why I like writing this blog, too..) It seems like everyone would want a chance to do this. Aren't we all going around most of the time wishing people really listened to us, and craving proof that our opinions matter? It's hard for me to understand why there aren't scores of people offering to give public talks for free. But, according to many studies, glossophobia (fear of public speaking) doesn't just beat out arachnaphobia and claustraphobia, it is actually more common that necrophobia (fear of death.) I guess I really am a freak of nature.
It seems like I've been this way forever.
In 3rd grade, I lied to my teacher, Ms. Young, whom I adored. Any girls who were taking ballet could be sugar-plum fairies in the holiday show. I'd never had a dance lesson in my life. We couldn't afford such things. But I raised my had with the lucky girls because I wanted to be up on that stage with the spotlight shining down on me. When I got home and told my mom that we were supposed to bring our tutu's to rehersal next week, she didn't scold me for lying or even embarrass me my making me borrow one. Instead, she sewed several yards of crimson tulle onto the waist of a Goodwill tanktop, and stitched 2 inches of crotch into the hem. It was beautiful and perfect and more than made up for the fact the the "stage" turned out to be the center of our classroom floor with the chairs pushed out of the way. Instead of a spotlight, we spun and twirled under our usual florescent ceiling lamps. I still feel a little bitter about that.
In 8th grade, I auditioned for cheerleading. I went to prep-practice after school every day to learn the words and motions of the cheers. I was good at it, loud and energetic. Everyone in the prep-group knew I would get picked. Highschool was going to be great. No more teasing. No more eating lunch alone. I would be a cheerleader! At try-outs, each girl chose a number out of a hat, to decide what order we would line up in. I got 8, my lucky number. When it was my turn to step up alone onto the real stage in our cafeteria, I stood their looking down at the volunteer moms with their lipstick and clipboards. I was ready to do my cheer perfectly as soon as they told me to start. But they didn't tell me to start. Instead, they asked me a totally unexpected question.
"What's your name, honey?" The words and rhythm of the cheer were pounding in my head. I wish I could remember them now. Back then, they were so clear, they drowned out all my other thoughts. I looked at the moms and nodded to let them know I was ready to start.
"We just need to write down your name, sweetie." That seemed reasonable, and I wanted to tell them, but those words weren't in the cheer, so I couldn't think of them.
"Just tell us your name, and then you can start." They were kind, but impatient. I was a great cheerleader, but they would never know it, because I couldn't...with everyone staring at me like that... remember my own name. I walked off the stage all the way home. I still wonder how my life might have been different if I had been a Walkersville High School Cheerleader.
For one thing, I wouldn't have been captain of the Debate Team or competed in Speech and Forensics. And I wouldn't have puzzled and frustrated Jennifer Shezman, the english teacher who served as our coach and advisor. Poor Ms. S did her best with all of us. She especially nurtured and encouraged me, because I had so much potential.
I exelled at extemporaneous speaking. Arriving at the competition with no idea what I would be asked to talk about, I was completely at ease. When handed a slip of paper that said, "Should flag burning be illegal?" or "Should the U.S. Colonize the Moon?" I always took less than the allotted 5 minutes to organize my thoughts and compose myself. Almost effortlessly, I opened my mouth and words would come out. My talks were entertaining, articulate, and prize-winning. Ms. Shesmann liked this about me. This didn't bother her at all.
What bothered her was that I prepared for the planned speech competetion in the exact same way. I didn't outline my thoughts ahead of time, research the subject or practice in front of the mirror. I didn't even consider the topic, though we were given it weeks and weeks in advance of the contest. Why should I, when I was winning these contests too?
I've always thought that what I needed, what Ms. Shesmann couldn't offer me, was deeper motivation. If I had wanted to give the best talk I could possibly give, not just one that was good enough to win, I might have prepared better. I might have written rough drafts and asked my sister to listen to it. This morning I was thinking how, finally, I have a deeper motivation for giving a really good talk. I really do want to motivate and educate people, so they can provide the strong and flexible support network that breast cancer patient/survivors need.
But, now that I'm writing all this, I'm having a new thought. Maybe my problem in high school wasn't just lack of motivation. Maybe my experience at cheerleader tryouts was still affecting me. Maybe, since being over-focused and over-prepared on that day had been my downfall, I started over-compensating. Maybe my unconcious strategy was to memorize nothing, fix my mind on emptiness, so that I would be prepared for whatever surprise the organizers threw my way. In middleschool, I had known exactly what words I was going to say, and exactly how to say them. I ended up silently mortified. In high school, with no idea what I would talk about or how, I chattered triumphant.
This week, as I sit down to write my speech, the prize of possibly helping other women outshines the chance to win a $25 gift certificate from the Kiwanis Club. I feel plenty motivated to organize my thoughts and gather research well ahead of showtime. I think I can also be flexible and spontaneous enough to tailor my talk to whatever audience shows up. But, just to be safe, I think I'll start the talk with a memorized introduction. It will go like this, "Hi. My name is..."
Here's what their home page says:
Often, breast cancer patients, especially the newly diagnosed, are in the greatest emotional pain, but are the least able to ask for help. Breast Friends teaches the friends and family of cancer patients specific ways to offer support, helps them understand what the patient is going through, and suggests useful resources for the patient and her family.
Addressing a woman's cancer is a sensitive issue, but we all want to help. However, friends often worry about not doing it "right". As a result, time passes, and to avoid doing it "wrong," we often don't do anything at all. Then, more time passes, and by then we are too embarrassed to pick up the phone and make the call. The message of Breast Friends is that it's never too late to make contact and provide useful and appreciated support to those we love who are facing this terrible disease.
They already have material put together that they hand out to survivor-supports. I'll be incorporating that into my talk, along with some personal stories about being a survivor myself. I'm also reaching out to the survivors and supporters that I know, to ask their opinions on the topic. I'd like yours, reader, as well.
If you're a breast cancer suvivor/patient, what did your friends and family do that was useful and meaningful. What did you ask for and how did your community come through for you? What do you wish you had asked for, or wish you'd handled differently? Was there anything anyone did that was more of a hassle than a help?
If you're a supporter of a breast cancer survivor/patient, what have your struggles been? What has made it easier for you to reach out? What has made it difficult? What do you feel proud of? What do you wish you'd done differently?
Back when I had cancer (I LOVE being able to talk about that in the past tense) I was floored by the creativity and generosity with which my friends and family shared their love and support with me. I still feel like swimming in that wave of care and kindness made it almost worth the nightmare of being diagnosed. I don't just want every other cancer suvivor to experience the same kind of affection and thoughtfullness that I did, I want every other person on the planet to experience it. Of course, I expecially want women dealing with breast cancer to feel as loved and cherished as I did.
And yet, when a friend of mine was recently diagnosed with breast cancer, I totally froze up inside and didn't know what to do.
Here are the thoughts and feelings that make it hard for me to reach out to her.
I don't really know her all that well. I'm sure she has lots and lots of other freinds and family that are bombarding her with their offers of assistance. I'd probably just be bothering her if I called her. I don't really know what she's going through, or where she's struggling. If I call and make suggestions about how I can help, it will sound like I think I know better than she does what she needs. If I say, "I'll do anything you want!" that will sound totally insincere. If I say, "I'll help out where I can," that sounds like I don't really want to be there for her. If I say, "let me know what I can do," then it's like I'm making it her responsibility to figure out what I can do for her. She's probably feeling overwhelmed already, I don't want her to feel like telling me how I can help her is one more thing she needs to add to her to-do list. She probably needs lots of rest and down time. If I call her I might be inturrupting her. If I send her an email, she'll feel like she needs to be polite and answer it. If I ask her when her appointments are, it will just sound like I'm being nosy. Everybody is talking about breast cancer all the time anymore. It's like it's our nation's new hip and cool disease. I don't want her to think I'm just jumping on some bandwagon and trying to be cool by volunteering to help some poor breast cancer patient.
Yes, I have all these thoughts and fears, even thought I'm a breast cancer survivor myself. Maybe I'm just a paranoid freak. But, I figure if I am having these hesitations, other people must be having them too. I hate to think of anyone going through what I went through this summer without a strong support network holding them up.
And, compared to what most breast cancer patients go through, what I went through this summer was easy-peasy-pie. I didn't have chemo, or radiation, or hormone-therapy. My health insurance covered the bulk of the cost of all my charges without a hitch. I didn't need to travel far for any of my diagnostic or treatment appointments. I healed up without complications. My surgeon, physical therapist, oncologist and all their staff were dedicated angels who treated me with respect and affection.
Despite all these blessings, the whole adventure was a bizarre nightmarish labyrinth peppered with surprise sinkholes of despair. I needed the buoyancy of my community's care, and I needed it bad. Women whose treatments are less swift and sure than mine was must need it even worse. I hope volunteering to do these talks can help them get it even better.
I'm also looking forward to the talk because I absolutely love getting up in front of big groups of people and telling them what I think about things. (I guess that's why I like writing this blog, too..) It seems like everyone would want a chance to do this. Aren't we all going around most of the time wishing people really listened to us, and craving proof that our opinions matter? It's hard for me to understand why there aren't scores of people offering to give public talks for free. But, according to many studies, glossophobia (fear of public speaking) doesn't just beat out arachnaphobia and claustraphobia, it is actually more common that necrophobia (fear of death.) I guess I really am a freak of nature.
It seems like I've been this way forever.
In 3rd grade, I lied to my teacher, Ms. Young, whom I adored. Any girls who were taking ballet could be sugar-plum fairies in the holiday show. I'd never had a dance lesson in my life. We couldn't afford such things. But I raised my had with the lucky girls because I wanted to be up on that stage with the spotlight shining down on me. When I got home and told my mom that we were supposed to bring our tutu's to rehersal next week, she didn't scold me for lying or even embarrass me my making me borrow one. Instead, she sewed several yards of crimson tulle onto the waist of a Goodwill tanktop, and stitched 2 inches of crotch into the hem. It was beautiful and perfect and more than made up for the fact the the "stage" turned out to be the center of our classroom floor with the chairs pushed out of the way. Instead of a spotlight, we spun and twirled under our usual florescent ceiling lamps. I still feel a little bitter about that.
In 8th grade, I auditioned for cheerleading. I went to prep-practice after school every day to learn the words and motions of the cheers. I was good at it, loud and energetic. Everyone in the prep-group knew I would get picked. Highschool was going to be great. No more teasing. No more eating lunch alone. I would be a cheerleader! At try-outs, each girl chose a number out of a hat, to decide what order we would line up in. I got 8, my lucky number. When it was my turn to step up alone onto the real stage in our cafeteria, I stood their looking down at the volunteer moms with their lipstick and clipboards. I was ready to do my cheer perfectly as soon as they told me to start. But they didn't tell me to start. Instead, they asked me a totally unexpected question.
"What's your name, honey?" The words and rhythm of the cheer were pounding in my head. I wish I could remember them now. Back then, they were so clear, they drowned out all my other thoughts. I looked at the moms and nodded to let them know I was ready to start.
"We just need to write down your name, sweetie." That seemed reasonable, and I wanted to tell them, but those words weren't in the cheer, so I couldn't think of them.
"Just tell us your name, and then you can start." They were kind, but impatient. I was a great cheerleader, but they would never know it, because I couldn't...with everyone staring at me like that... remember my own name. I walked off the stage all the way home. I still wonder how my life might have been different if I had been a Walkersville High School Cheerleader.
For one thing, I wouldn't have been captain of the Debate Team or competed in Speech and Forensics. And I wouldn't have puzzled and frustrated Jennifer Shezman, the english teacher who served as our coach and advisor. Poor Ms. S did her best with all of us. She especially nurtured and encouraged me, because I had so much potential.
I exelled at extemporaneous speaking. Arriving at the competition with no idea what I would be asked to talk about, I was completely at ease. When handed a slip of paper that said, "Should flag burning be illegal?" or "Should the U.S. Colonize the Moon?" I always took less than the allotted 5 minutes to organize my thoughts and compose myself. Almost effortlessly, I opened my mouth and words would come out. My talks were entertaining, articulate, and prize-winning. Ms. Shesmann liked this about me. This didn't bother her at all.
What bothered her was that I prepared for the planned speech competetion in the exact same way. I didn't outline my thoughts ahead of time, research the subject or practice in front of the mirror. I didn't even consider the topic, though we were given it weeks and weeks in advance of the contest. Why should I, when I was winning these contests too?
I've always thought that what I needed, what Ms. Shesmann couldn't offer me, was deeper motivation. If I had wanted to give the best talk I could possibly give, not just one that was good enough to win, I might have prepared better. I might have written rough drafts and asked my sister to listen to it. This morning I was thinking how, finally, I have a deeper motivation for giving a really good talk. I really do want to motivate and educate people, so they can provide the strong and flexible support network that breast cancer patient/survivors need.
But, now that I'm writing all this, I'm having a new thought. Maybe my problem in high school wasn't just lack of motivation. Maybe my experience at cheerleader tryouts was still affecting me. Maybe, since being over-focused and over-prepared on that day had been my downfall, I started over-compensating. Maybe my unconcious strategy was to memorize nothing, fix my mind on emptiness, so that I would be prepared for whatever surprise the organizers threw my way. In middleschool, I had known exactly what words I was going to say, and exactly how to say them. I ended up silently mortified. In high school, with no idea what I would talk about or how, I chattered triumphant.
This week, as I sit down to write my speech, the prize of possibly helping other women outshines the chance to win a $25 gift certificate from the Kiwanis Club. I feel plenty motivated to organize my thoughts and gather research well ahead of showtime. I think I can also be flexible and spontaneous enough to tailor my talk to whatever audience shows up. But, just to be safe, I think I'll start the talk with a memorized introduction. It will go like this, "Hi. My name is..."
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