Yesterday I was mistaken for a man. It happened at the Harris Teeter near Timberlyne up on MLK way. It was around 10am. I had just come from visiting Matthew at Cup of Joe and had on a Cup of Joe baseball cap (more like a Greek fisherman's cap), my flannel jacket from Nepal (it's black with multicolor bands at the wrists), and my yoga pants (which for me means my ankles are showing) with my keen slip ons. I mention this because I think if one were to see me, the entire me, there are sartorial signs that may read more as "feminine" than "masculine" or at least clothing you'd associate more with a woman (yoga pants), although I also recognize that some of my other clothing may have seemed either masculine or androgynous (baseball cap, keen shoes). The jacket probably just registered as "ethnic."
Anyway, I was standing in line with my basket and a checker appeared and said directly to me, "Sir, I can take you at that counter," pointing to the register to my left. I literally looked in back of me, wondering if perhaps I was mistaken in who he was speaking to, and then I realized that, no, it was ME, and I dutifully followed him.
And then I had to make a decision: do I say something or not say something. Do I try to pass as a guy or do I let him know he's made a mistake.
Since I am pretty sure that as low voiced as I *think* I am, I'm really not so low pitched as to be mistaken for a guy. I also think that upon closer inspection (like seeing the diamond wedding band that I wear or the bracelet on my wrist) the guy might realize his mistake and feel more embarrassed. So I said to him, "Even though I know I look like a guy, I'm actually a woman."
I said this without any judgment or inflection--just stated it as matter-of-factly as I could. The checker (a college aged kid) was pretty chagrined--apologized--but I smiled and told him it was my short hair that fooled him. And he smiled, relieved, and agreed that the hair was what made him think I was a man.
Which of course has led me to think about my gender identity--or the way that I present myself as a woman.
Because previous to my cancer/chemo/surgery, I would have told you that I exhibit pretty masculine traits. That I liked wearing men's shirts (especially oversized white button down shirts); that I used to sing tenor parts in the chorus during high school because there weren't enough boys to sing those parts; that I have that annoying "male" way of interrupting people during conversations and other verbal markers that signal a more masculine rather than feminine talking style. And, in general, I just would have said that I don't *feel* very feminine.
To which I now say: RUBBISH.
I mean, you don't know what it's like not to feel feminine until you lose your hair and your breasts.
I also think it was easy for me to say that I felt masculine, because my female identity and my hetero identity were so firmly entrenched and seemingly one and the same. In other words, I wonder to what degree it's easy for me, as a straight-identified, pre-bilateral mastectomy and pre-chemotherapy-loss-of-hair woman, to say that I identify as "masculine" or feel myself to have "masculine" traits when so many of my obvious physical features read "feminine"--including my clothes and accessories: necklaces, rings, dresses, etc... Even more androgynous clothing like jeans or suit jackets were tailored for women rather than men--as well as my shoes--they clearly read female.
Yet ever since the loss of my hair and the loss of my breasts, I've been thinking about my gender identity, in terms of my physical features. I've been wondering about what parts of me are still coded as feminine and which parts of me may truly seem to be more androgynous, more masculine. When I look at myself from the neck down wearing a t-shirt for example, I encounter a flat chest that resembles a boy's more than a woman's. And when I look at myself in the mirror, with my hair cropped close to my head, I see an uncanny resemblance to my male cousins. In fact, when I had my head shaved by Matthew back in July, my mother remarked that I in the photos I posted on this blog I looked just like my Uncle Hunter.
All of which has made me realize that as much as I may look like a boy, I actually do feel like a girl (or woman rather). I actually identify, quite strongly, with being a woman--because my mannerisms, my clothing choices, my body language, my voice, are all coded as feminine and all convey a sense of my womanliness. My missing breasts didn't make me more of a woman, nor more feminine. My hair, well that's a different story. I do think that short hair plus androgynous clothing can equal gender confusion. Which may be why I'm not sure if I'll be keeping my hair short. That as much as I like to academically think about ambiguity, I'm not sure how I feel about being in an ambiguously gendered body.
And yet there's a part of me that thinks that perhaps this is a time for me to explore androgyny--to explore what it means to occupy a body that is feminine without such feminine markers as longer hair and breasts. To think about what it may mean for me to either intentionally pass as male or to allow myself to be mis-read--to not have corrected the check-out clerk but to just let him make his own assumptions about who I am.
Something to think about as I more through space in this new body of mine and a key question for me to wonder about is: what will I feel like wearing a summer dress? Will this be a moment when I feel the full weight of the loss of my breasts and the loss of a part of my femininity? I suppose we'll have to wait until May to find out.
Monday, January 17, 2011
Friday, January 14, 2011
Learning my limits
OK, here's a truth. I'm tired. I don't know if I'm more or less tired than I was during chemo and post-surgery. Probably less tired. At least physically it's easier for me to move around. But I *feel* fatigued. On many levels.
I think I've downplayed my exhaustion for a few reasons. Primarily I think that I have a hard time accepting that being tired and not having a lot of energy or energy in reserve, which I think is the more accurate description for my condition right now, is part of my new reality. And I think I've been reluctant to accept this because I have been concentrating on being BETTER--on healing and resuming my regular routine and a sense of normalcy.
But the truth is, I'm tired a lot. I just don't have the energy that I used to have. And what I mean by this is my life pre-chemo/surgery. My life pre-cancer diagnosis. And my fatigue and exhaustion aren't just physical--it's also mental and emotional. It's a new inability to handle stress in the same way. And a recognition that I need to be as gentle with myself as possible. To really cut myself slack. To not demand too much of myself.
In short, I need to learn my limits--my physical limits but also my mental/emotional limits.
And this is a hard thing for me to do. I'm normally a very high energy person. And I'm a multitasker who is a perfectionist and who burns the candles at both ends (and sometimes in the middle). I have extraordinarily high (overly high) expectations for myself (and for those close to me, unfortunate at times, I realize) and in general I feel like I should deliver on those expectations.
But I can't right now. Pushing myself, something I'm used to doing, is just not an option. I don't have it in me.
Case in point: after teaching back-to-back classes yesterday, I canceled my office hours and collapsed on the couch at home, pretty much not getting up until I collapsed in bed (where I promptly fell asleep the minute my head touched my pillow). Normally teaching back-to-back classes and holding office hours would leave me tired, but not "bone-dead-I'm-going-to-pass-out" tired.
This is my new reality. And it reminds me that teaching takes energy. Emotional and mental energy, in addition to physical energy. I think I forget this because I enjoy teaching and because I've been doing it for so long now that it almost seems like it is second nature to me. But it's work--it takes work to be a good teacher. And I'm not sure how organized or coherent or lively I was yesterday. I know I forgot to share some basic information with my students about their assignments--leading me to follow-up on email. I know that I felt scattered and a bit dis-organized during the first hour of teaching, perhaps a consequence of being out of the classroom for so long. And I know that I was surprised by all of this.
Which I shouldn't be. I shouldn't be surprised that teaching is going to be different for me this semester. That my body is different. I am different. And I should be gentle with myself. To not demand too much of myself, especially in these first few weeks back in the classroom.
And yet...I'm disappointed. Disappointed in my body for not having more energy. In myself for not being more organized and accomplishing more. Disappointed that I am still healing--that I'm not healed (past tense). It's silly, I know. Healing is something that can't be rushed. And I know that if I were someone else, I would tell me to be more patient and to be gentle and that what I went through was a big deal and I have to learn to limit myself and it's not a failing or an indictment on my character or sense of self.
Why do we often become our hardest critics? And is this just because I'm an academic who deconstructs and critiques others for a living?
(sigh)
Maybe I just need a mantra to get through the next few weeks and months. Be gentle Jen...be gentle Jen. Hopefully I can learn to take my own advice.
[Update/Aside: If you saw the post below, you'll see that Matthew and I adopted a new dog, Bella. Unfortunately, we had to return her to her foster mother last week Monday when we realized that Bella had some very aggressive tendencies. Specifically, she tried to attack Bruno 3 times and was also aggressive with our friend's dog, Squirrel. It was a hard decision, but at the end of the day, we feel we made the right choice because we couldn't live with the tension and with the uncertainty of her attacking Bruno. And it's also part of learning my own limits--it wasn't the right time to get another dog because teaching is just about all I can handle right now.]
I think I've downplayed my exhaustion for a few reasons. Primarily I think that I have a hard time accepting that being tired and not having a lot of energy or energy in reserve, which I think is the more accurate description for my condition right now, is part of my new reality. And I think I've been reluctant to accept this because I have been concentrating on being BETTER--on healing and resuming my regular routine and a sense of normalcy.
But the truth is, I'm tired a lot. I just don't have the energy that I used to have. And what I mean by this is my life pre-chemo/surgery. My life pre-cancer diagnosis. And my fatigue and exhaustion aren't just physical--it's also mental and emotional. It's a new inability to handle stress in the same way. And a recognition that I need to be as gentle with myself as possible. To really cut myself slack. To not demand too much of myself.
In short, I need to learn my limits--my physical limits but also my mental/emotional limits.
And this is a hard thing for me to do. I'm normally a very high energy person. And I'm a multitasker who is a perfectionist and who burns the candles at both ends (and sometimes in the middle). I have extraordinarily high (overly high) expectations for myself (and for those close to me, unfortunate at times, I realize) and in general I feel like I should deliver on those expectations.
But I can't right now. Pushing myself, something I'm used to doing, is just not an option. I don't have it in me.
Case in point: after teaching back-to-back classes yesterday, I canceled my office hours and collapsed on the couch at home, pretty much not getting up until I collapsed in bed (where I promptly fell asleep the minute my head touched my pillow). Normally teaching back-to-back classes and holding office hours would leave me tired, but not "bone-dead-I'm-going-to-pass-out" tired.
This is my new reality. And it reminds me that teaching takes energy. Emotional and mental energy, in addition to physical energy. I think I forget this because I enjoy teaching and because I've been doing it for so long now that it almost seems like it is second nature to me. But it's work--it takes work to be a good teacher. And I'm not sure how organized or coherent or lively I was yesterday. I know I forgot to share some basic information with my students about their assignments--leading me to follow-up on email. I know that I felt scattered and a bit dis-organized during the first hour of teaching, perhaps a consequence of being out of the classroom for so long. And I know that I was surprised by all of this.
Which I shouldn't be. I shouldn't be surprised that teaching is going to be different for me this semester. That my body is different. I am different. And I should be gentle with myself. To not demand too much of myself, especially in these first few weeks back in the classroom.
And yet...I'm disappointed. Disappointed in my body for not having more energy. In myself for not being more organized and accomplishing more. Disappointed that I am still healing--that I'm not healed (past tense). It's silly, I know. Healing is something that can't be rushed. And I know that if I were someone else, I would tell me to be more patient and to be gentle and that what I went through was a big deal and I have to learn to limit myself and it's not a failing or an indictment on my character or sense of self.
Why do we often become our hardest critics? And is this just because I'm an academic who deconstructs and critiques others for a living?
(sigh)
Maybe I just need a mantra to get through the next few weeks and months. Be gentle Jen...be gentle Jen. Hopefully I can learn to take my own advice.
[Update/Aside: If you saw the post below, you'll see that Matthew and I adopted a new dog, Bella. Unfortunately, we had to return her to her foster mother last week Monday when we realized that Bella had some very aggressive tendencies. Specifically, she tried to attack Bruno 3 times and was also aggressive with our friend's dog, Squirrel. It was a hard decision, but at the end of the day, we feel we made the right choice because we couldn't live with the tension and with the uncertainty of her attacking Bruno. And it's also part of learning my own limits--it wasn't the right time to get another dog because teaching is just about all I can handle right now.]
Sunday, January 2, 2011
Looking back and looking forward
It's now the second day of the new year, 2011, and I typically don't do new year's resolutions (seems like a set up for failed expectations) but leaving behind one year for the next does seem to be a chance to look back and reflect, as well as to look ahead with hopes and aspirations.
I know I haven't been writing much on this blog--truth be told, the last entry about why I chose not to do reconstruction seemed to be a place for me to pause in terms of my processing about cancer and chemo and surgery. Maybe I also needed a break from writing--which is funny since one could argue that all I've had since May 2010 is a break from writing and working (aside from blog writing that is, well, and some light editing and conference planning activity that I've been doing for the Association for Asian American Studies).
When I think about 2010, the last year of the first decade of the 21st century, I realize that it will be marked by my illness and cancer--that I will have spent more days of that year living with the knowledge that I have/had cancer than days not knowing--or to put it another way, that most of 2010 was occupied with being in and out of various doctor's offices (or more accurately, waiting rooms).
It'd be easy to say that 2010 was a horrible year and I'm glad it's over. But 2010 will also mark the year I turned 40, and most especially (and most significantly) the year I got married to Matthew. It will also mark the year I turned in my tenure file. And most recently, the year that Matthew and I expanded our family to include Bella--the newest addition to the Grady-Ho household:
[We've been debating about a second dog for a while now, but after we returned from our pre-Christmas vacation to Charleston--we decided to look in earnest and we found her through a rescue organization that takes dogs from rural shelters and fosters them in Wake Forest. So far Bruno is tolerating (just barely) his more energetic younger sister--we're hoping that in time, they'll really grow closer]
So there have been some important milestone and moments in 2010 that I'll look back on in fondness. And some of them, I must confess, have also been around my cancer diagnosis. Now, I still hold firm to the fact that if I had to do it over again, I would NEVER WANT TO HAVE CANCER OR GO THROUGH CHEMO AND SURGERY. But...I'd be lying if I didn't say that post-cancer diagnosis, I have been nearly overwhelmed and deeply moved by the love and kindness of people in my life. From near strangers to my oldest and closest family members, there have been random acts of kindness and love and support from people that have really humbled me. In particular, all the people who dropped off food--the food gifts were incredible and are most memorable, to me, as both a symbolic and material way for people to express their support/concern/affection.
Of course, there are moments that I will never want to relive. That awful feeling in the pit of my stomach upon hearing the initial diagnosis. The worry and concern, the anxiety and fear I could see on people's faces or hear in their voices when I shared my diagnosis. The entire experience of chemotherapy and surgery. The realization that I would more than likely lose ovarian function and be unable to get pregnant. The loss of my hair (which is, thankfully, growing back very quickly).
So 2010 was an awful year, health wise (and I should add, not just for myself but for my dear Aunt Teri-Ann and dear friend Jeff Cross--and there are other friends who have had health issues this year and who have had their own surgeries and experiences in doctors' waiting rooms & offices). Which means that in looking forward, what I most hope for 2011 is good health. For myself, for all my loved ones, for all of you.
What 2011 will actually bring is anyone's guess. I will be back in the classroom on January 11--which makes it the first time in a year that I'll be teaching undergrads (I only taught a single grad seminar Spring 2010, so this is one of the longest absences I've had from teaching undergrads). I'm still working on my book manuscript on racial ambiguity (I have 40 very rough pages on Tiger Woods that I'm not proud of ... yet, and I need to work on a chapter about transracial/transnational adoptees). I'm the conference co-chair for the annual meeting of the Association for Asian American Studies (yep, I've been doing conference stuff for the last few months while recuperating from surgery). And then there's my tenure file...I still need to be observed in the classroom--and then my department will vote on me (in late February I believe) and then I await news from the college and provost committees (keep your fingers crossed ladies and gentlemen). I've got a lot on my plate professionally.
Am I better? Yes. By which I mean, I've got my hair back (yay!), I'm no longer feeling so fatigued (although I still have bouts of exhaustion and my energy level is still not 100%--after walking Bella for 40 minutes the other day I came home and collapsed. Walking for 40 minutes should NOT drain me normally...I'm not sure how I'm going to train for this 4 mile race in April if this persists). I still have some tightness in my arms and chest post-surgery, but in general I have full range of motion. And most of all, psychologically and emotionally I feel strong.
But I want to clarify one thing about that last statement. While I do feel like my cancer is in the past--part of the memories of 2010 I will carry with me, I don't feel like I'm necessarily "over" it--I don't necessarily know if I'll ever feel the way I did pre-April 2010, mentally and emotionally that is (well, even physically since there's no way to get my original breasts back or to take away these physical scars). I have been marked by this disease, for better or worse, and I will carry those psychic scars with me, just as I wear the physical scars. They are part of my life now, and I am learning to live with them.
I'm not sure how much blogging I'll be doing in this space. I suspect that I'll still write posts from time to time. There is one about my gender identity, in particular, that I'd like to explore. But for those of you who were mostly checking in to see how I was doing, you probably won't be hearing much on the health front--you hopefully won't be hearing anything significant on the cancer or N.E.D. front EVER (that'd be wonderful, wouldn't it?). So this may be the last entry you decide to read, which is fine by me. I am grateful that people wanted to know what was going on with me and checked into the blog at all.
So Happy New Year! Lets hope that 2011 is good to us all, body and soul.
[Me & Bruno at Folly's Beach, SC -- see, my hair IS growing back!]
I know I haven't been writing much on this blog--truth be told, the last entry about why I chose not to do reconstruction seemed to be a place for me to pause in terms of my processing about cancer and chemo and surgery. Maybe I also needed a break from writing--which is funny since one could argue that all I've had since May 2010 is a break from writing and working (aside from blog writing that is, well, and some light editing and conference planning activity that I've been doing for the Association for Asian American Studies).
When I think about 2010, the last year of the first decade of the 21st century, I realize that it will be marked by my illness and cancer--that I will have spent more days of that year living with the knowledge that I have/had cancer than days not knowing--or to put it another way, that most of 2010 was occupied with being in and out of various doctor's offices (or more accurately, waiting rooms).
It'd be easy to say that 2010 was a horrible year and I'm glad it's over. But 2010 will also mark the year I turned 40, and most especially (and most significantly) the year I got married to Matthew. It will also mark the year I turned in my tenure file. And most recently, the year that Matthew and I expanded our family to include Bella--the newest addition to the Grady-Ho household:
[We've been debating about a second dog for a while now, but after we returned from our pre-Christmas vacation to Charleston--we decided to look in earnest and we found her through a rescue organization that takes dogs from rural shelters and fosters them in Wake Forest. So far Bruno is tolerating (just barely) his more energetic younger sister--we're hoping that in time, they'll really grow closer]
So there have been some important milestone and moments in 2010 that I'll look back on in fondness. And some of them, I must confess, have also been around my cancer diagnosis. Now, I still hold firm to the fact that if I had to do it over again, I would NEVER WANT TO HAVE CANCER OR GO THROUGH CHEMO AND SURGERY. But...I'd be lying if I didn't say that post-cancer diagnosis, I have been nearly overwhelmed and deeply moved by the love and kindness of people in my life. From near strangers to my oldest and closest family members, there have been random acts of kindness and love and support from people that have really humbled me. In particular, all the people who dropped off food--the food gifts were incredible and are most memorable, to me, as both a symbolic and material way for people to express their support/concern/affection.
Of course, there are moments that I will never want to relive. That awful feeling in the pit of my stomach upon hearing the initial diagnosis. The worry and concern, the anxiety and fear I could see on people's faces or hear in their voices when I shared my diagnosis. The entire experience of chemotherapy and surgery. The realization that I would more than likely lose ovarian function and be unable to get pregnant. The loss of my hair (which is, thankfully, growing back very quickly).
So 2010 was an awful year, health wise (and I should add, not just for myself but for my dear Aunt Teri-Ann and dear friend Jeff Cross--and there are other friends who have had health issues this year and who have had their own surgeries and experiences in doctors' waiting rooms & offices). Which means that in looking forward, what I most hope for 2011 is good health. For myself, for all my loved ones, for all of you.
What 2011 will actually bring is anyone's guess. I will be back in the classroom on January 11--which makes it the first time in a year that I'll be teaching undergrads (I only taught a single grad seminar Spring 2010, so this is one of the longest absences I've had from teaching undergrads). I'm still working on my book manuscript on racial ambiguity (I have 40 very rough pages on Tiger Woods that I'm not proud of ... yet, and I need to work on a chapter about transracial/transnational adoptees). I'm the conference co-chair for the annual meeting of the Association for Asian American Studies (yep, I've been doing conference stuff for the last few months while recuperating from surgery). And then there's my tenure file...I still need to be observed in the classroom--and then my department will vote on me (in late February I believe) and then I await news from the college and provost committees (keep your fingers crossed ladies and gentlemen). I've got a lot on my plate professionally.
Am I better? Yes. By which I mean, I've got my hair back (yay!), I'm no longer feeling so fatigued (although I still have bouts of exhaustion and my energy level is still not 100%--after walking Bella for 40 minutes the other day I came home and collapsed. Walking for 40 minutes should NOT drain me normally...I'm not sure how I'm going to train for this 4 mile race in April if this persists). I still have some tightness in my arms and chest post-surgery, but in general I have full range of motion. And most of all, psychologically and emotionally I feel strong.
But I want to clarify one thing about that last statement. While I do feel like my cancer is in the past--part of the memories of 2010 I will carry with me, I don't feel like I'm necessarily "over" it--I don't necessarily know if I'll ever feel the way I did pre-April 2010, mentally and emotionally that is (well, even physically since there's no way to get my original breasts back or to take away these physical scars). I have been marked by this disease, for better or worse, and I will carry those psychic scars with me, just as I wear the physical scars. They are part of my life now, and I am learning to live with them.
I'm not sure how much blogging I'll be doing in this space. I suspect that I'll still write posts from time to time. There is one about my gender identity, in particular, that I'd like to explore. But for those of you who were mostly checking in to see how I was doing, you probably won't be hearing much on the health front--you hopefully won't be hearing anything significant on the cancer or N.E.D. front EVER (that'd be wonderful, wouldn't it?). So this may be the last entry you decide to read, which is fine by me. I am grateful that people wanted to know what was going on with me and checked into the blog at all.
So Happy New Year! Lets hope that 2011 is good to us all, body and soul.
[Me & Bruno at Folly's Beach, SC -- see, my hair IS growing back!]
Saturday, December 11, 2010
Missing MY missing breasts and why I chose not to reconstruct
On Monday, December 13, it will be 8 weeks since I had my bi-lateral (double) mastectomy surgery and 4 weeks since the last drain was removed from my right side. It will also be 12 weeks since my last round of chemo and approximately 6 months since I was originally diagnosed with breast cancer in April 2010.
How am I doing?
This is the question I am most asked from friends and colleagues and acquaintances when I see them after a few days/weeks/months. It was the #1 question I got when I went to my department's holiday party last week. And my answer, genuine and consistent, is that I'm good, or to be grammatically correct, I'm well. I'm doing just fine. I'm still a bit tight in my chest--yoga and the physical therapy exercises definitely help--and I'm definitely still tired/fatigued as a result of the healing that my body is still undergoing. Case in point: after being on my feet for 3 hours on Wed. at the holiday party (and I attended the IAH party before the English dept party, so it was really TWO holiday parties I went to on Wednesday) I spent the next 2 days either in-bed or on the couch because I WAS SO TIRED I COULD NOT MOVE--QUITE LITERALLY, I WAS CRASHED OUT AND CLEARLY MY BODY WAS SAYING STOP, YOU NEED TO REST.
But really, perhaps what people want to know is
"What is it like not to have breasts? How are you coping psychologically and emotionally?"
So this is the post that talks about missing my missing breasts, and why I chose NOT to do reconstructive surgery.
Because I do miss my breasts. Or let me put it this way, I miss MY breasts. It's not just the abstract concept of having a breast or the gendered nature of feeling feminine by being a woman with breasts, or even noticing that my clothes don't quite fit the same way (which is definitely true) but first and foremost, I miss MY breasts--the breasts I was born with, that grew with me as I grew, that I lived with throughout my teen years and learned to take pleasure in, sexually, as I grew into my adult sexuality.
And that last point--what my breasts mean to me sexually--is why I did not choose reconstruction.
The truth is, prior to my cancer diagnosis, I didn't think a lot about my breasts. I liked them because they were part of my body and, in general, they've worked well for me. They weren't so big that they became cumbersome to me, and they weren't so small that I couldn't fill out a dress nicely. They were, in the words of that immortal children's tale, "just right." But I have to say, that I found my nipples, outside of sexual pleasure, a bit inconvenient. In U.S. society we frown on women's nipples (maybe men's nipples too, but it's more acceptable to see them). Women need to cover up their nipples--anyone who has ever seen the machinations to which starlets will go to reveal all parts of their boob except for their nipple will understand what I mean. It would be considered unprofessional for a woman at work to wear a blouse and NOT wear a bra, especially if it was a white shirt or a tight blouse. And I always found wearing bras to be inconvenient for the most part. My way out, during winter months, was the camisole top.
I mention all of the above to give you a picture of how I pretty much treated, aesthetically, my breasts. How I feel about my breasts in terms of my sexual life is a different matter. And I know that saying all of this may be odd or make others feel uncomfortable, but the bottom line for me is that my breasts, my nipples, were most important to my sexual identity and sexual life.
So when I learned that breast reconstruction would allow me to aesthetically look the way I used to look but would not let me FEEL the way I used to feel, that pretty much sealed the deal for me. Because as I noted above, what I want are MY breasts--I want to feel MY breasts--I don't want to just look down and see that I have breasts or be reassured that my clothes will fit exactly as they had before. First and foremost, reconstruction would feel like a cosmetic choice for me; it would hide the loss of my breasts but would not speak to my emotional loss at their absence.
Let me just pause here and say that I know that my view and perspective is a pretty minority view and perspective. Anecdotally, in a very small sample of women who have had double-mastectomy surgery (like about a dozen) only one woman, my maternal aunt, elected not to have reconstructive surgery--and most of my female friends and family told me that if they were in my position, they would definitely want reconstructive surgery--that having breasts are VERY IMPORTANT to their sense of identity--to their sense of normalcy--to their sense of just being women.
I do understand this. Completely. I judge no one for their choice in wanting reconstructive surgery. Especially the desire to feel normal again--to feel like you are yourself again. To not want to worry about how your clothes feel or about looking so different--of feeling self conscious while undressing in a locker room or dressing room or even in the privacy of your bedroom and bathroom. I understand the desire to want to feel whole again--and especially with what plastic surgeons are doing nowadays with nipple tattoos--and the improvements in silicon inserts--breast implants and reconstructive surgery gives women who have had mastectomies breasts that are just like their former ones or ideal breasts that they always wanted.
And while, for the most part, my family and friends have been very respectful and supportive of my choices, whether they personally would choose the same route or not, what I've been surprised at is the reaction and assumptions from acquaintances and virtual strangers--that everyone assumes that I will change my mind--that the only reason I'm not choosing reconstruction is that all of this is too overwhelming for me and I will change my mind when more time has passed and I have healed. There have been nurses who have assumed I will be doing reconstruction while going through chemotherapy. Strangers have told Matthew that I may say I don't want reconstructive surgery but as a woman I will, of course, change my mind and get reconstructive surgery, I just simply don't know my own mind right now. Friends of friends have told me that I can now have larger breasts or the ideal breasts I've always wanted. Even extended family tell me not to be stubborn and to be open to getting breast reconstruction in the future, assuming that due to my contrary nature that I will secretly want reconstructive surgery a year from now but will be too proud to get it because I've been so vehement about not wanting reconstructive surgery.
Is there a possibility I will change my mind?
Yes, of course. I think I'd seem too truculent at this point if I say no.
But if I were a betting woman, I would not count on me changing my mind. There has never been a point, prior to my cancer diagnosis, during my decision making about whether to do a lumpectomy of both breasts or the bi-lateral mastectomy, during chemotherapy, and leading up to my surgery when I ever thought that I wanted to do reconstruction. There is nothing about reconstruction that is appealing to me. It is not a judgment on anyone's decision to do reconstruction--it is my own level of comfort, my own relationship to my breasts, my own sense of what I miss about my missing breasts, that leads me to this certainty.
I miss my missing breasts. I miss having part of the body that I was born with. I miss the absence of my breasts. But having new breasts--ones that aren't part of me, that don't give me any sensation or pleasure--would not take away from my sadness over missing my breasts. In fact, what I feel in my gut is that choosing reconstruction, for me, would be very wrong. It would feel wrong--it would feel false--it would not make me feel whole. On the contrary, it would remind me more starkly than the scars I currently carry with me, of what I have lost.
And perhaps, most of all, what I realized before my surgery, in looking at the images I was lucky enough to find on-line of a woman who also chose not to do reconstruction (click here to see her Flickr stream), was that I would be OK. I would be OK without breasts. I would learn to live without my breasts, and it will be weird (it is weird) but at the end of the day, it will also be OK--and that most importantly of all, my decision to not do reconstruction is the right decision for me.
[Addendum: I should say that my decision was reinforced by a pamphlet that my wonderful surgeon, Keith Amos, gave to me. It is distributed by a non-profit organization here in Raleigh, Myself: Together Again (click here on the link). It's a wonderful booklet that, in image and text, chronicles a young woman's bi-lateral mastectomy surgery and reconstructive surgery. It shows the scars, her port, the drains, the plastic surgeon's marks, the expanders, and finally what she looks like with her nipple tattoos and the silicon implants in. For anyone considering either breast augmentation or breast reconstruction, this is an important booklet to look at. I was glad to page through it, because my visceral reaction on seeing it was reassurance that I had made the right decision--reconstruction is not for me]
How am I doing?
This is the question I am most asked from friends and colleagues and acquaintances when I see them after a few days/weeks/months. It was the #1 question I got when I went to my department's holiday party last week. And my answer, genuine and consistent, is that I'm good, or to be grammatically correct, I'm well. I'm doing just fine. I'm still a bit tight in my chest--yoga and the physical therapy exercises definitely help--and I'm definitely still tired/fatigued as a result of the healing that my body is still undergoing. Case in point: after being on my feet for 3 hours on Wed. at the holiday party (and I attended the IAH party before the English dept party, so it was really TWO holiday parties I went to on Wednesday) I spent the next 2 days either in-bed or on the couch because I WAS SO TIRED I COULD NOT MOVE--QUITE LITERALLY, I WAS CRASHED OUT AND CLEARLY MY BODY WAS SAYING STOP, YOU NEED TO REST.
But really, perhaps what people want to know is
"What is it like not to have breasts? How are you coping psychologically and emotionally?"
So this is the post that talks about missing my missing breasts, and why I chose NOT to do reconstructive surgery.
Because I do miss my breasts. Or let me put it this way, I miss MY breasts. It's not just the abstract concept of having a breast or the gendered nature of feeling feminine by being a woman with breasts, or even noticing that my clothes don't quite fit the same way (which is definitely true) but first and foremost, I miss MY breasts--the breasts I was born with, that grew with me as I grew, that I lived with throughout my teen years and learned to take pleasure in, sexually, as I grew into my adult sexuality.
And that last point--what my breasts mean to me sexually--is why I did not choose reconstruction.
The truth is, prior to my cancer diagnosis, I didn't think a lot about my breasts. I liked them because they were part of my body and, in general, they've worked well for me. They weren't so big that they became cumbersome to me, and they weren't so small that I couldn't fill out a dress nicely. They were, in the words of that immortal children's tale, "just right." But I have to say, that I found my nipples, outside of sexual pleasure, a bit inconvenient. In U.S. society we frown on women's nipples (maybe men's nipples too, but it's more acceptable to see them). Women need to cover up their nipples--anyone who has ever seen the machinations to which starlets will go to reveal all parts of their boob except for their nipple will understand what I mean. It would be considered unprofessional for a woman at work to wear a blouse and NOT wear a bra, especially if it was a white shirt or a tight blouse. And I always found wearing bras to be inconvenient for the most part. My way out, during winter months, was the camisole top.
I mention all of the above to give you a picture of how I pretty much treated, aesthetically, my breasts. How I feel about my breasts in terms of my sexual life is a different matter. And I know that saying all of this may be odd or make others feel uncomfortable, but the bottom line for me is that my breasts, my nipples, were most important to my sexual identity and sexual life.
So when I learned that breast reconstruction would allow me to aesthetically look the way I used to look but would not let me FEEL the way I used to feel, that pretty much sealed the deal for me. Because as I noted above, what I want are MY breasts--I want to feel MY breasts--I don't want to just look down and see that I have breasts or be reassured that my clothes will fit exactly as they had before. First and foremost, reconstruction would feel like a cosmetic choice for me; it would hide the loss of my breasts but would not speak to my emotional loss at their absence.
Let me just pause here and say that I know that my view and perspective is a pretty minority view and perspective. Anecdotally, in a very small sample of women who have had double-mastectomy surgery (like about a dozen) only one woman, my maternal aunt, elected not to have reconstructive surgery--and most of my female friends and family told me that if they were in my position, they would definitely want reconstructive surgery--that having breasts are VERY IMPORTANT to their sense of identity--to their sense of normalcy--to their sense of just being women.
I do understand this. Completely. I judge no one for their choice in wanting reconstructive surgery. Especially the desire to feel normal again--to feel like you are yourself again. To not want to worry about how your clothes feel or about looking so different--of feeling self conscious while undressing in a locker room or dressing room or even in the privacy of your bedroom and bathroom. I understand the desire to want to feel whole again--and especially with what plastic surgeons are doing nowadays with nipple tattoos--and the improvements in silicon inserts--breast implants and reconstructive surgery gives women who have had mastectomies breasts that are just like their former ones or ideal breasts that they always wanted.
And while, for the most part, my family and friends have been very respectful and supportive of my choices, whether they personally would choose the same route or not, what I've been surprised at is the reaction and assumptions from acquaintances and virtual strangers--that everyone assumes that I will change my mind--that the only reason I'm not choosing reconstruction is that all of this is too overwhelming for me and I will change my mind when more time has passed and I have healed. There have been nurses who have assumed I will be doing reconstruction while going through chemotherapy. Strangers have told Matthew that I may say I don't want reconstructive surgery but as a woman I will, of course, change my mind and get reconstructive surgery, I just simply don't know my own mind right now. Friends of friends have told me that I can now have larger breasts or the ideal breasts I've always wanted. Even extended family tell me not to be stubborn and to be open to getting breast reconstruction in the future, assuming that due to my contrary nature that I will secretly want reconstructive surgery a year from now but will be too proud to get it because I've been so vehement about not wanting reconstructive surgery.
Is there a possibility I will change my mind?
Yes, of course. I think I'd seem too truculent at this point if I say no.
But if I were a betting woman, I would not count on me changing my mind. There has never been a point, prior to my cancer diagnosis, during my decision making about whether to do a lumpectomy of both breasts or the bi-lateral mastectomy, during chemotherapy, and leading up to my surgery when I ever thought that I wanted to do reconstruction. There is nothing about reconstruction that is appealing to me. It is not a judgment on anyone's decision to do reconstruction--it is my own level of comfort, my own relationship to my breasts, my own sense of what I miss about my missing breasts, that leads me to this certainty.
I miss my missing breasts. I miss having part of the body that I was born with. I miss the absence of my breasts. But having new breasts--ones that aren't part of me, that don't give me any sensation or pleasure--would not take away from my sadness over missing my breasts. In fact, what I feel in my gut is that choosing reconstruction, for me, would be very wrong. It would feel wrong--it would feel false--it would not make me feel whole. On the contrary, it would remind me more starkly than the scars I currently carry with me, of what I have lost.
And perhaps, most of all, what I realized before my surgery, in looking at the images I was lucky enough to find on-line of a woman who also chose not to do reconstruction (click here to see her Flickr stream), was that I would be OK. I would be OK without breasts. I would learn to live without my breasts, and it will be weird (it is weird) but at the end of the day, it will also be OK--and that most importantly of all, my decision to not do reconstruction is the right decision for me.
[Addendum: I should say that my decision was reinforced by a pamphlet that my wonderful surgeon, Keith Amos, gave to me. It is distributed by a non-profit organization here in Raleigh, Myself: Together Again (click here on the link). It's a wonderful booklet that, in image and text, chronicles a young woman's bi-lateral mastectomy surgery and reconstructive surgery. It shows the scars, her port, the drains, the plastic surgeon's marks, the expanders, and finally what she looks like with her nipple tattoos and the silicon implants in. For anyone considering either breast augmentation or breast reconstruction, this is an important booklet to look at. I was glad to page through it, because my visceral reaction on seeing it was reassurance that I had made the right decision--reconstruction is not for me]
Tuesday, December 7, 2010
14% chance
Today Elizabeth Edwards died from metastatic breast cancer. She was first diagnosed in 2004, the day after John Kerry & John Edwards failed to win the 2004 Presidential election. The tumor (which she discovered herself) was the size of a half dollar. It was detected early and the prognosis was good because it had not spread to her body but was contained to her breast. She did a lumpectomy, along with chemotherapy and radiation. In 2006, over a year after her diagnosis, her oncologist said, "that I had a lot going on in my life . . . but cancer was not one of them" (taken from The Daily Kos). Then in March 2007, Edwards discovered that her cancer had spread to her ribs, hip, and possibly her lungs. Her oncologist, Dr. Lisa Carey, confirmed that there was no cure for her cancer but that it could be treated and she could live a very full life for the next few years. But that her cancer was terminal. (Here is the link with the original press conference that the Edwards' did at UNC Chapel Hill: http://www.nytimes.com/2010/12/08/us/08edwards.html?hp).
When I heard that Elizabeth Edwards had passed away this evening I cried. I'd like to be able to tell you that it was purely out of empathy and sympathy -- that my tears were for her young children, as well as her older daughter, her extended family and friends, and even for her estranged husband. But I cried not only in sadness for another woman felled by cancer, but because this particular woman, who lived in Chapel Hill, who had the same disease I have, who shared the same oncologist that I have (yes, Dr. Lisa Carey, is also my oncologist), and who had a similar prognosis, initially, to my prognosis--could be me.
There is a 14% chance that what happened to Elizabeth Edwards will happen to me.
There is a 14% chance that I will be going to see my oncologist for a follow-up appointment 2 years from now and she will be concerned about a symptom that I am exhibiting and in follow-up tests will tell me that the cancer has returned and it is in my bones or a major organ.
There is a 14% chance that just like Elizabeth Edwards, I will be living with stage IV metastatic cancer, trying to figure out how to live with a diagnosis of terminal cancer--how to live with the certain knowledge that my natural life span will be drastically cut short.
And there is a 14% chance that like Elizabeth Edwards I will not be here in six years. That I will die from the cancer in my body.
I'm scared. Not to the point where I feel paralyzed. And not to the point where I am going to spiral into depression. But in the here and now--on the night that Elizabeth Edwards has died, I'm scared. And I cried not only because a very public woman who had breast cancer died, a woman who lived less than 10 miles down the road from me, but because when I heard that Elizabeth Edwards had died today, I realized that that could be me. We have the same disease with a similar prognosis, were treated in the same facility by the same oncologist. How could I not feel freaked out and wonder if that will be me one day?
Which is why I can't say I'm a survivor. I know I've written about this in past posts, but I think Edwards death reminds me that I live with a certain amount of uncertainty. I want to be part of that 86%. I live every day with most of me believing that I will be part of that 86%. But then there are days, like today, where a shadow is cast, and I am reminded that there are the 14% of people who don't survive this disease.
The last thing I'll say, though, is that as selfish as part of my tears were, I do mourn Elizabeth Edwards death. Because I think a lot of what she said and did regarding her cancer diagnosis was exemplary and provide me with a model for how I want to approach my own future. In countless interviews after her 2007 cancer relapse, she reiterated that everybody has to die; in her case, she now knows what she's going to die from. She also said that what she wants to show people isn't a woman dying from cancer but a person living with cancer. And that this is the biggest message she has for people with cancer--not to focus on the dying but on the living.
And so in honor of Elizabeth Edwards, I'm going to focus on living my life as well as I can. I hope you will too.
When I heard that Elizabeth Edwards had passed away this evening I cried. I'd like to be able to tell you that it was purely out of empathy and sympathy -- that my tears were for her young children, as well as her older daughter, her extended family and friends, and even for her estranged husband. But I cried not only in sadness for another woman felled by cancer, but because this particular woman, who lived in Chapel Hill, who had the same disease I have, who shared the same oncologist that I have (yes, Dr. Lisa Carey, is also my oncologist), and who had a similar prognosis, initially, to my prognosis--could be me.
There is a 14% chance that what happened to Elizabeth Edwards will happen to me.
There is a 14% chance that I will be going to see my oncologist for a follow-up appointment 2 years from now and she will be concerned about a symptom that I am exhibiting and in follow-up tests will tell me that the cancer has returned and it is in my bones or a major organ.
There is a 14% chance that just like Elizabeth Edwards, I will be living with stage IV metastatic cancer, trying to figure out how to live with a diagnosis of terminal cancer--how to live with the certain knowledge that my natural life span will be drastically cut short.
And there is a 14% chance that like Elizabeth Edwards I will not be here in six years. That I will die from the cancer in my body.
I'm scared. Not to the point where I feel paralyzed. And not to the point where I am going to spiral into depression. But in the here and now--on the night that Elizabeth Edwards has died, I'm scared. And I cried not only because a very public woman who had breast cancer died, a woman who lived less than 10 miles down the road from me, but because when I heard that Elizabeth Edwards had died today, I realized that that could be me. We have the same disease with a similar prognosis, were treated in the same facility by the same oncologist. How could I not feel freaked out and wonder if that will be me one day?
Which is why I can't say I'm a survivor. I know I've written about this in past posts, but I think Edwards death reminds me that I live with a certain amount of uncertainty. I want to be part of that 86%. I live every day with most of me believing that I will be part of that 86%. But then there are days, like today, where a shadow is cast, and I am reminded that there are the 14% of people who don't survive this disease.
The last thing I'll say, though, is that as selfish as part of my tears were, I do mourn Elizabeth Edwards death. Because I think a lot of what she said and did regarding her cancer diagnosis was exemplary and provide me with a model for how I want to approach my own future. In countless interviews after her 2007 cancer relapse, she reiterated that everybody has to die; in her case, she now knows what she's going to die from. She also said that what she wants to show people isn't a woman dying from cancer but a person living with cancer. And that this is the biggest message she has for people with cancer--not to focus on the dying but on the living.
And so in honor of Elizabeth Edwards, I'm going to focus on living my life as well as I can. I hope you will too.
Tuesday, November 23, 2010
A traffic jam/detour/pit stop/on my road to health
As those of you following my blog (and thank you for this!) know, last week Tuesday I had my last drain removed, and I was ecstatic! I mean, all day I just felt euphoric--the difference was both literal/physical and emotional/psychological. I was looking forward to all the things I could start to do, again, of increasing my physical therapy routine so that I could be on a golf course mid-December.
And then.
I woke up Thursday with a fever.
I had a head cold that I was battling on Tuesday, but I didn't think much of a little head cold--I figured the sore throat would go away soon and then all would be well--nothing could stop me!
Well, something has. Because it is day #6 of me waking up with a mild fever--and yesterday (morning #5) I finally went to see my doctor who confirmed that I have an adenovirus--and my symptoms (low grade fever of around 100-101.7, body aches/pains, sore throat, lots of phlegm) can persist for 2 weeks and I'm, potentially, contagious through Thursday, but most especially for someone like me who is recovering from surgery and the effects of chemo, my immune system is working really hard and so the risk for secondary infections (like pneumonia) is high, so my doctor has prescribed bed rest for another week! And she has especially admonished me to avoid crowd and children. Which means I'll be spending Thanksgiving with Bruno (I'm sending Matthew to his folks, even though he has vounteered to stay home and take care of me, but honestly, all I'm doing is sleeping and watching movies and reading novels. I'm not very good company right now).
It makes me very sad not to be able to join Jane & John for Thanksgiving--it has been my tradition since moving to Chapel Hill to spend turkey day at the Danielwicz-McGowan homestead--and I was especially looking forward to this year since Thanksgiving is my favorite holiday (who doesn't love a holiday devoted to eating and family--OK, racial politics with American Indians are problematic--I get that). The even sadder thing about my condition is that I have no appetite. So truth be told, I don't even feel like eating right now. Which was one big tip off to me that I really needed to see the doctor--me not feel like eating? Definitely something is wrong.
And of course since bad news or bad things happen in groups (often in 3's), yesterday was also the day that my laptop monitor decided to go on the fritz. I can "sort've" see the screen, but not really--enough for me to hook up my external hard drive and back up all the files that I need, but not enough to be able to read anything that I could open. So it's off to the Apple store for my poor little laptop (which is 4 years old--I've had it as long as I've been with Matthew).
So that's what's new in my world. It seems ironic (and I do think I'm using this correctly, unlike Ms. Morisettte) that right when I get my drain out and am finally mobile again, I literally am not getting out of bed because I just lack the energy and interest in doing anything other than sleeping. And of course it's just very unjust to lose my appetite right before Thanksgiving (sigh).
But I suppose I shouldn't be moaning and groaning too much. I mean, I may not currently have my "health" so to speak, but I am definitely on the road to recovery (hence the awkward title post). And I'm REALLY looking forward to the day when I get all my mobility back, when my hair grows back, and when I start to *feel* like I did before. And I guess that has me wondering: will I?
And then.
I woke up Thursday with a fever.
I had a head cold that I was battling on Tuesday, but I didn't think much of a little head cold--I figured the sore throat would go away soon and then all would be well--nothing could stop me!
Well, something has. Because it is day #6 of me waking up with a mild fever--and yesterday (morning #5) I finally went to see my doctor who confirmed that I have an adenovirus--and my symptoms (low grade fever of around 100-101.7, body aches/pains, sore throat, lots of phlegm) can persist for 2 weeks and I'm, potentially, contagious through Thursday, but most especially for someone like me who is recovering from surgery and the effects of chemo, my immune system is working really hard and so the risk for secondary infections (like pneumonia) is high, so my doctor has prescribed bed rest for another week! And she has especially admonished me to avoid crowd and children. Which means I'll be spending Thanksgiving with Bruno (I'm sending Matthew to his folks, even though he has vounteered to stay home and take care of me, but honestly, all I'm doing is sleeping and watching movies and reading novels. I'm not very good company right now).
It makes me very sad not to be able to join Jane & John for Thanksgiving--it has been my tradition since moving to Chapel Hill to spend turkey day at the Danielwicz-McGowan homestead--and I was especially looking forward to this year since Thanksgiving is my favorite holiday (who doesn't love a holiday devoted to eating and family--OK, racial politics with American Indians are problematic--I get that). The even sadder thing about my condition is that I have no appetite. So truth be told, I don't even feel like eating right now. Which was one big tip off to me that I really needed to see the doctor--me not feel like eating? Definitely something is wrong.
And of course since bad news or bad things happen in groups (often in 3's), yesterday was also the day that my laptop monitor decided to go on the fritz. I can "sort've" see the screen, but not really--enough for me to hook up my external hard drive and back up all the files that I need, but not enough to be able to read anything that I could open. So it's off to the Apple store for my poor little laptop (which is 4 years old--I've had it as long as I've been with Matthew).
So that's what's new in my world. It seems ironic (and I do think I'm using this correctly, unlike Ms. Morisettte) that right when I get my drain out and am finally mobile again, I literally am not getting out of bed because I just lack the energy and interest in doing anything other than sleeping. And of course it's just very unjust to lose my appetite right before Thanksgiving (sigh).
But I suppose I shouldn't be moaning and groaning too much. I mean, I may not currently have my "health" so to speak, but I am definitely on the road to recovery (hence the awkward title post). And I'm REALLY looking forward to the day when I get all my mobility back, when my hair grows back, and when I start to *feel* like I did before. And I guess that has me wondering: will I?
Tuesday, November 16, 2010
Drain, drain go away, today, YAY!
The drain is OUT!
YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
That's about all I have to say about that.
(oh, and I have a head cold -- sigh)
But let me repeat, THE DRAIN IS OUT!!!
So I leave you with a little George Michaels
YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
That's about all I have to say about that.
(oh, and I have a head cold -- sigh)
But let me repeat, THE DRAIN IS OUT!!!
So I leave you with a little George Michaels
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