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]

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.