Posts Tagged ‘vanity’
My bloggy friends have really hit some important notes about Angelina Jolie’s prophylactic bilateral mastectomies, a decision she made public in a recent editorial in the New York Times.
Jackie called out those who were judging her decision.
Marie wrote a good explainer about the BRCA gene and why its presence might lead to such a choice.
Nancy took up the issue of gene patenting and how the prohibitive cost of the BRCA test limits women’s choices.
Philippa reminded us of the stark global inequities in breast cancer care, telling some stories from Sri Lanka and Timor.
What could I possibly have to add?
Like my friends, I was asked by many to offer my opinion about Jolie’s choice. (I fully support it.) But since I have been hanging back on blogging, I was delighted to know so many smart and articulate people who cover the big issues when these Cultural Moments in Cancer happen.
Something struck me, though, amidst the media frenzy that has been less central to the ensuing conversation.
Women’s self-hating chatter about a radical surgery.
First there was a BRCA positive celebrity on an entertainment news program who talked about anticipating her prophylactic mastectomies. She told the interviewer laughingly:
It’s like a deluxe boob job!
Here is another exchange from a Facebook thread. Both women are educated –– Woman A is a doctor –– but the attitude is the same:
Each time, my stomach dropped. This trivializes a body-altering operation.
I had a preventive mastectomy. A tumor presented in one breast, but I had to decide about whether to remove the healthy one as well. After genetic counseling, I was tested for the BRCA genes as well as a known mutation prevalent among Ashkenazi Jews. My genetic tests revealed no known genes, but the multifocal presentation of the tumor in my breast, my young age, and my ethnicity led four clinical oncologists to suspect some unknown genetic origin. Although I did not get a definitive risk like Jolie –– 87% is pretty clear cut in the medical world –– all these doctors recommended a prophylactic mastectomy.
I went ahead with the surgery. I got reconstruction, although mine was more complicated than Jolie’s because of the radiation I received as part of my treatment.
I have the new tatas that the women seem to joke about.
And you know what?
I really miss my old ones. We had a history together. I nursed three children with them. They fit my middle aged body. They felt much more than the ones I have now.
As I tend to do when something in CancerLand raises my ire, I posted the following on my Facebook page:
As you can see, this got a lot of “likes.”
On that thread, somebody generously shared the following:
Immediately prior to formal diagnosis (i.e., after the lump was discovered but before the second biopsy), I found the idea of a “deluxe boob job” (and tummy tuck, woo hoo!) to be very comforting. When talking to friends, that’s how I framed it, because breast cancer was much easier to talk about in those terms.
I really appreciated this honesty. It gave me insight into this “boob job” framing.
And here is what it reveals about our culture and breast cancer:
It is more socially acceptable for us to dislike our bodies to the point of wanting to surgically alter them than it is to grieve the loss of identity and sensation that mastectomies require.
I notice that folks are not chatting as playfully about the oopherectomy (ovary removal) that Jolie plans to undergo. There is no soft-pedaling that operation. An oopherectomy means a sudden, surgical menopause. Friends of mine have described it, and it is not pretty. There is no femininity-preserving (or, to hear some women describe it, femininity-improving) reconstruction.
So my question is:
When women with ambiguous cancer risks undergo preventive mastectomies, how much does their own culturally acceptable body-loathing play into that “choice”? Can we call it a choice when there are obviously such strong messages that downplay the loss and pain and overplay the body improvement aspect of this surgery?
For information on genetic risks and breast and ovarian cancer, please visit FORCE: Facing Our Risk of Cancer Empowered.
Tags: appearance, body issues, boobs, cancer culture, courage, essay, identity loss, reconstruction, social media, vanity
Posted in Treatment | 12 Comments »
I have had a hard time writing about reconstruction. It doesn’t quite fit the heroic cancer narrative of kicking ass and taking names. It’s more personal and intimate. Reconstruction serves quite literally to rebuild not to cure, making it awkward for an audience.
Nonetheless, I have had some interest bubble up through my various connections about what I am up to and what it is like. I asked my friend and fellow blogger Katie from Uneasy Pink to generate some questions for me to answer on the topic. So, here we go…
How did you chose from the alternatives?
I had delayed reconstruction, largely because of my radiation. Radiation damages skin and muscle on your chest, thereby completely altering your reconstruction options. My doctors uniformly advised me against starting reconstruction until 12-18 months after radiation because of the increased potential for complications with both my medical treatment and the cosmetic result.
This is my attempt at making a decision-tree illustrating reconstruction options.
A number of choices were not available to me because of the specifics of my case.
Once I began reconstruction 15 months after radiation, my goal was the best cosmetic outcome with the least chance of complications or damage.
Women undergoing breast reconstruction can choose broadly between tissue reconstruction and implant reconstruction. Because of my radiation treatment and body fat content, I was not a candidate for tissue reconstruction. (You can read more about these options here. There is also a newer kind of tissue reconstruction that I did not have access to, although I would likely be a candidate for it.)
Among the options for implant reconstruction, I chose bilateral lat flaps with tissue expanders and silicon implants.
Lat flaps involve taking some latissimus dorsi muscle from the back and moving it to the chest to create a shelf for the breast implant.
Tissue expanders work to stretch skin to make room for saline or silicon implants.
Because of my radiation, I had to do lat flaps on the right side. The skin was too damaged to just place tissue expanders and implants under the chest muscle (the alternative). I could have opted to do the flap on one side and the expanders under muscle on the other, but it would have compromised the cosmetic result because of the inherent asymmetry. Although I had some hesitation around the lat flaps, my doctor reassured me that they take a very small amount of muscle to make the shelf for the implant.
I chose the silicon implant because it was lighter and more natural feeling. My surgeon reassured me about the quality of the silicon implants he uses. The saline also risked dimpling and sloshing when I run.
What it have the surgeries been like for you?
I had never had surgery before I had cancer. Through all the treatments I underwent as a cancer patient, I had the easiest time with surgery. My tolerance for anesthesia and overall fitness seem to play into this.
That being said, having surgery after chemo as I did with my mastectomies was a whole different ballgame compared having surgery when I felt fit. Although the first of my reconstructive surgeries was the most difficult (it involved the lat flap construction and tissue expander placement), my suffering paled in comparison to what I experienced with my mastectomies. I was in the hospital for four days and had 6 drains in all. Definitely not fun. But waking up with an A cup nearly brought tears to my eyes.
In what ways has it met/exceeded/fallen below your expectations?
I would say that overall, so far, this processes has met or exceeded my expectation. The first surgery was tough, but I regained mobility quickly. Interestingly, I had so much scarring from radiation that my mobility actually improved since my surgeon removed significant cording from my armpit.
The one part I did not anticipate as fully was how uncomfortable the tissue expanders would be. The tissue expanders go in during the first surgery and are little bags that get injected with saline little by little to stretch out the skin. Once I got above a B cup (about 300 ml on my body), I was quite uncomfortable. My final fill went up to 400 ml, so that was over a month of living with that discomfort.
How has it impacted you physically, as far as strength, exercise and flexibility go?
I am athletic and sensitive to my body, but I have not noticed any difficulties with the lat flaps. I did a lot of weight training before the surgery. Whether this just helped me psychologically or provided actual support, I do not know. But once I healed from that, I was able to resume my training with my regular weights. This surprised me because I was prepared for an adjustment period. As I said, my range of motion actually improved because of the improvements with the scarring.
How about the psychology of it?
For me, this has been the best part. Not having to strategize my neckline with every outfit. Feeling like I can have some lovely amnesia about everything I went through with the treatment. I know fully that these are not fully functional breasts –– they do not have the sensation of real breasts –– I feel more like myself with them.
I knit this sweater for myself to wear after surgery. I call it “Welcome back, girls.”
If a person is going to do this surgery, what can she realistically expect for recovery time?
“This surgery” is really three surgeries. Luckily they get progressively easier. The first surgery is the lat flap and tissue expander placement. It is the toughest, with 2-3 weeks of really being out, and another 3 weeks of limited activity. The follow-up fills also require appointments and continual adjustments.
The second surgery involved switching out the tissue expanders for the implants. The whole thing took less than an hour. There were no drains involved, and I was off of pain medication within a week’s time. My physical activity is restricted for four weeks.
I will report on the final surgery (nipple reconstruction) once it’s over. But the surgeon assures me that this will be the easiest procedure of the three.
What’s one thing the doctor didn’t tell you that a woman facing the surgery should know?
My doctor was pretty frank with me, but I think I still underestimated the discomfort of the expanders. By the time my second surgery was on the horizon, I felt 9 months pregnant. I was ready to get those puppies out of me.
UPDATE: My friend Sarah found an actual decision chart in the back of a book by a surgeon in the UK. There is another procedure that uses tissue from the buttocks to make a new breast!
Tags: appearance, body issues, boobs, choices, reconstruction, social media, straight talk, survivorship, vanity
Posted in Survivorship | 20 Comments »
There are so many stories I could tell about my surgery last week: how my friends, neighbors, colleagues and family rallied around me, once again, to get me through this ordeal; about the absurdity of waiting in the recovery room for 9 1/2 hours because the hospital was overfull; about specific interactions with doctors and nurses that merit closer examination.
All of these would make for good blog posts.
What I want to share with you, however, is a feeling. Feelings are fleeting but powerful.
For me, this feeling defines the experience of my surgery:
I have had a hard time writing this post. It feels personal and intimate.
But I wanted to share this emotion, this delight, of waking up with breasts.
During my surgery, my doctor filled each of my expanders with 200 milliliters of saline, giving my hospital gown a nice A-cup sized bump. I have spent almost a year and a half with nothing, less than a flat chest. And I saw again that familiar, feminine shape on my body.
Although there are obviously many important differences, the closest thing I have experienced to the surprise, joy, and pleasure I experienced in that moment is when my babies were handed to me after I gave birth.
I have gone through such a long journey. I have had pain and loss. And now I had something new and lovely to show for my suffering.
I am delighted.
Truly, truly delighted.
Tags: appearance, body issues, changes, gratitude, identity loss, reconstruction, survivorship, vanity
Posted in Survivorship | 21 Comments »
The date is now set for the first of my reconstructive surgeries. As has been my custom, I sent out a dispatch to my support people to inform them of the date and some of the needs my family and I will have.
But you know what I forgot to include?
What the surgery was for.
I got some concerned notes from friends, wondering if I had experienced a recurrence or morbidity from earlier surgeries. Was I BRCA positive? Was this an oophorectomy or hysterectomy?
As regular readers of my blog know, I usually lay things on the table medically. I am not typically coy about what goes on.
This omission was interesting. Why had I suddenly become so uncharacteristically shy?
Blogger friend Stacey has written about how awkward it is to discuss reconstruction –– sometimes even with your doctors.
Luckily, I have felt very comfortable with my docs.
Family, friends, and colleagues… well that’s a different matter.
Part of it, I think, is that people are not as presumptuous about the “correctness” of other phases of cancer treatment. When you tell folks you have to have chemo, the skeptics may, at most, ask if you had a second opinion. But once you assure them of your diagnosis, they only offer sympathy.
Breast reconstruction becomes infused with opinion. Political opinion. Medical opinion. Cosmetic opinion.
While not everybody states their views outright, they find ways to insinuate them into conversations.
I am familiar with this dynamic. It reminds me most of the kind of indirect (and sometimes quite direct) judgments I felt in conversations about childbirth and breastfeeding.
For this reason, I am going to provide here my personal answers to the FIQ’s in conversations about my choice to pursue reconstruction.
What are FIQ’s?
I just made them up.
Frequently Insinuated Questions.
So here goes.
Why don’t you just embrace your new body?
Yes, this is the body that let me live. But it is also a body of trial and grief. It is a body that reminds me of what I have endured every time I dress and undress, every time I wear a swim suit, every time I hug. My happiest post-treatment moments are ones that do not foreground my cancer experience. I would like to have more of that pleasant amnesia around my body itself.
I have been told by more than one person about women who embrace their mastectomied bodies by tattooing their scars. Cool on them. When people stare at you, you have given them something to look at, have changed the meaning of the stare into, “What an awesome tattoo.” I think that’s great.
But it doesn’t work for me. Aside from not being a tattoo person, I am not a candidate for tattoos, between the extensive radiation and the lymph node dissection which leaves me prone to infection. I sometimes get the feeling that I disappoint people by not being a badass tattooed survivor.
Why would you want to endure more surgeries?
I have my reasons. Of all three events in the Triathlon from Hell — chemo, surgery, and radiation — I tolerated surgery the best. It seemed to be the one place where my prior fitness paid off.
I don’t want to endure more surgeries. But cancer often forces you to choose between crappy options.
The best preparation I have had for this aspect of cancer treatment is a game I played with my brothers growing up. We would pose gruesome hypothetical scenarios and ask each other to justify our choices, like, “Would you rather freeze to death or be burnt alive?”
Other women may not experience it this way, but for me, choosing between my mastectomy scarred body and more surgery is one of those would you rather scenarios with no right answer. Choose your pain: the accretion of small psychic insults for the rest of your life, or intense, short term suffering for a physical approximation of what you have lost. On the balance, my personal answer, after much self reflection, is that I would rather endure 9 months of surgery.
I do not judge other women for making different decisions. I wish I did not feel judged by others for my choice.
Why didn’t you just get reconstruction when you had your mastectomies?
If I had insisted, I could have. My radiation oncologist told me clearly that it would risk compromising the treatment and it would make for a lesser cosmetic outcome. My priority during treatment was to save my life. I figured I would deal with the cosmetic aspects at a later point, once I knew that is what I wanted to do.
The surgeons at my hospital recommended waiting 12-18 months for my tissue to heal after radiation. Delayed reconstruction has been psychologically hard, but the morbidity rates are lower than reconstruction on radiated skin. In some ways, it has given me an opportunity to live with a mastectomy body and have a clear sense of my own feelings about that. I will not have to wonder how it felt.
Are breasts really that important to you?
Growing up, I had a friend who was born with noticeable asymmetry in her face. Nobody questioned her and her family’s decision to get plastic surgery for her when she got old enough. Faces are part of how you present yourself to the world, how people see you and interact with you.
Later, my friend Josh had part of his arm removed to treat sarcoma. He wore a prosthetic initially, but found it cumbersome and finally decided to let everybody deal with their discomfort around his missing body part. He used humor to help put people at ease, like about the particular danger he would pose if he texted while driving.
So where do breasts fall on the spectrum of body parts? Do non-conforming breasts socially require surgical correction, the way that we all understood my friend’s facial surgery?
I imagine breasts fall somewhere in the middle, and different women answer that question differently.
Here is where I land. I don’t like choosing my clothing around my surgery. I don’t like the extensive strategizing I end up doing when it comes time to change in the locker room. I don’t like the sinking feeling I get every time I undress, no matter where I am. I don’t like the feeling of cuddling my children with prostheses.
I have spoken with enough women who have made different choices to get a sense of the trade-offs. I have no illusion of “becoming whole again.”
But I have listened to other’s stories, and I have spoken with my doctors about the medical realities.
I know of a woman in her 40s who enjoyed swapping out different sized prostheses –– or wore none at all –– to suit her fashion choices and activities. I know a 90 year old woman who had a radical mastectomy in the 1970s who told me she never felt comfortable with her modified body. I know a small-chested BRCA positive woman who got prophylactic mastectomies without reconstruction and felt surprised at how much she missed having breasts.
There is no one answer here. But I would appreciate trust from people I know that this is the right choice for me.
Tags: appearance, body issues, boobs, changes, coping, essay, healthy people, identity loss, reconstruction, straight talk, survivorship, vanity
Posted in Survivorship | 56 Comments »
This past Sunday, I met up with a local running club. About fifty or so runners congregated at the park entrance. It was a crisp, clear day. The coach called our attention and announced the morning’s runs.
I listened attentively as he spoke. I’m just getting my running legs back, but I’m pursuing them with a vengeance. I asked my oncologist what I could do to help ensure that I am not one of the 20% of women in my situation who end up with metastatic cancer. She told me that I will hear a lot of unfounded advice, but from her point of view, the only two things that would influence my prognosis are keeping myself to my lowest healthy weight and exercising regularly.
So I signed up for two half marathons. The first one will exactly 4 months after my last treatment, one year after my last Big Chemo. The other will be right after my 40th birthday in April.
The coach described three runs for the morning, and now I had to choose. I had a dilemma, though. To train for my half, I needed the longer distance of the intermediate group. Because I have just started to get my mojo back, the beginning group’s pace suited me better.
The choice may seem obvious to some of you. Of course, I hear you say, I needed to go the distance with the intermediate group and settle into the back of the pack.
But that’s a big adjustment for me. I’m not used to traveling at the back of the pack.
I went with the intermediate group and started out the 8 mile run at too quick of a clip, chatting alongside another runner. After a half a mile, I realized that I couldn’t hang in.
“Sorry, I’m going to have to drop back,” I said.
In my former life, my pride would have spurred me on to push myself to meet his pace. But my body is fragile as it recovers. It must take precedence over my ego.
As I ran along, letting more and more runners pass me by, I meditated on the metaphor of this situation. Others look at me and see somebody who is fit. I have the gear and the form of an experienced runner. I am relatively young. My hair is long enough and my complexion rosy, so I no longer look the part of the cancer patient. People expect me to be a different kind of runner.
However my pace belies these expectations. My body knows the difference. My lungs bear the scars of the radiation. My heart is recovering from the 18 doses of Herceptin which caused it temporary damage.
It doesn’t matter what they think, I tell myself. I know how to do this. I know how to get in the rhythm of my own breath. It’s a hilly course, and I know how to steady my own exertion so that I climb with constant effort.
The run brings my reality into sharp focus. I am constantly facing choices like this, managing people’s expectations of me and my own limitations. Right now, on this course and in my life, I can expend my energy on distance or pace but not both at once.
I run at the end of the pack, but I am not alone. There is a woman in front of me. From the look of her physique and form, she is a newer runner. She often slows to walk the hills. She hasn’t learned how to change her stride and pump her arms, to manage her energy on the climb. Every time she hears me approach, she picks up her pace again, determined not to be The Last One. Once I realize this, I feel somewhat annoyed. Today, I bear the stigma of The Last One. She doesn’t want to be me.
I have to fight my vain desire to pass her up just to make a point. I decide to treat this like yoga. I tell myself that I have to follow my breath and find my body’s edge. Stop comparing, I tell myself.
I am pleased with myself as I get into mile 7. The run has been good, and I’ve carried myself the whole way without walking. I feel strong enough to go for a few more miles if needed.
We approach another hill, and the woman slows so that now she is only a few yards ahead of me.
As the hill gets steeper, she stops to walk once again.
This time I pass her up.
I find a metaphor in this moment, too.
I may not be able to do speed and distance, but I have not lost the strategy for dealing with the hills. My illness may have set me back, but I still benefit from the wisdom of my experience.
Tags: appearance, attitude, body issues, changes, coping, courage, daily life, essay, healthy people, identity loss, survivorship, vanity
Posted in Survivorship | 13 Comments »