Laurie - Owning my body

In October of 2013, I had an abnormal mammogram. As I was looking up the terms used by the radiologist for what he was seeing in my films, I happened to run across an article discussing the genetic link between breast cancer and pancreatic cancer. My dad died of pancreatic cancer about a year ago and his brother died of it the summer before that. Their sister and mother both had bilateral breast cancers. Bilateral breast cancers strongly indicate a genetic link, particularly when the woman is younger than age 50. I immediately thought RED FLAG!!!

I never knew breast cancer was linked to other types of cancer, caused by the BRCA genes. All this time I was worried about my mom's side, because my mom was diagnosed with stage 4 breast cancer at age 45 and died at age 50. I knew that I had some risk on my dad's side, but I didn't think it was the “worrisome side.

I met with a genetic counselor and we went over the family history, and she confirmed what I was thinking: there were probably one or more of the BRCA genes at work and my dad's side was the more worrisome side.

Long story short, I was diagnosed with extensive Grade 3 DCIS in the suspicious breast and was advised to have a double mastectomy based on my own health history and family history.

The genetic tests all came back negative. Good news? We'll say yes, but the reality is they probably just weren't able to identify the gene that is causing the cancer in my family.

I had my mastectomy on November 15th, 2013, 3 days before my 43rd birthday. The final outcome was all clear, lymph nodes clear, no disease in the other breast. My surgery went fine, with the exception of a bleeder that required a second surgery to prevent a seroma. Physically, I have healed very well. There is still some minor discomfort on the bleeder side, but it is manageable. I do not have to have any further treatment: no chemo, radiation, or hormone treatment. I am lucky.

I have had 20+ years to think about what I would do if cancer came a' knockin', and I knew I would not opt for reconstruction. I have been well endowed my whole life. I was a 38 DDD when I had my surgery. There was nothing I really liked about my breasts anyway, heavy, droopy, neck and back pain, shoulder grooves from carrying them around, clothes never fit right, always in the way! Why would I want to try to recreate them? I knew they would never be natural looking or comfortable if they were fake. I just knew in my gut, I would rather go flat and be comfortable and just be myself in whatever shape I ended up in.

My mom was one of the first women to get the TRAM flap procedure, 23 years ago. She was a guinea pig. With stage 4 breast cancer, with lung and brain mets, they never should have offered this to her, but they did. She survived it without complications, but I wonder how much more time it took off of her life to go through it.

My grandmother, who was diagnosed with breast cancer at age 88, had a double mastectomy without reconstruction, due to her age. She lived to be 98. I clearly saw the difference in recovery between these two women. One day, my grandma asked me if I wanted to see her scars and flashed me before I had a chance to answer. LOL! She was just flat, clean and flat, like a child. She was proud of the work her surgeon did (my grandma was an RN) and, surprisingly, her surgeon turned out to be my surgeon 20 years later.

Around the same time I was preparing for mastectomy, I found a terrific group "Flat and Fabulous" on Facebook. This is a closed group for women who choose to live flat and not go through the process of reconstruction.

What I wasn't expecting from this journey was the enormous mental shift in how I look at myself, in how I look at my life, in how I look at my interactions with others. The mental part took me completely by surprise. Everything came to the surface. All the questions...What is my purpose in life? Why am I here? Why was I given a second chance? How will others see me, what will they think, do I care, should I care? 20 years of grief over my mother, over my grandmother came walking back into my head. So many changes set into motion, having my whole mental landscape pulled out from under me at the worst possible time, my darkest hour. Trying to figure out- how am I going to survive what is going on in my head, much less what I am dealing with in the outer world, reconstructing myself in the world, the rock bottom of my marriage, paying bills, putting kids through college, and trying not to just go jump off of a cliff. All these toxic thoughts...

This is where my Flat and Fabulous (FF) sisters are a lifeline. I found a place where I can vent, where I can share what I am going through. Every day someone posts something that makes me realize I am doing ok, someone is like me, this is normal, someone is feeling just what I am feeling, I am not alone.

Many of us struggle with how we want to present our new selves to the world. Do we wear foobs (prosthetics) to fit in or to fullfill a need to appear whole to ourselves? Do we find clothes that camoflauge or do we just embrace the flatness and go forward? As a plus size woman, it was very frustrating to try to find clothes that flattered my top without making me look completely out of proportion. So I began putting together outfits that worked and sharing selfies of my outfits with my FF sisters, both for feedback and to encourage myself (mostly) and the other women that we can rock this new form.

Many of us struggle not only with the self image issues but with how losing our breasts has affected our sensuality/sexuality. While I was not one who felt that my breasts defined my sexuality, it was still something that shifted after the surgery. How do you find and heal those lost parts of yourself? How do you find the courage and hope that someone will see your innate beauty, mostly to find the courage to do that for yourself?

Many of the FF sisters had been bravely posting selfies of their scars, I finally worked up the courage, too. Here is my post regarding that whole process:

"So I've been mulling over whether to share these photos, partly because of some of the previous posts, regarding modesty, etc. and my own comfort level of what I feel I want to share. This whole process of dealing with cancer, one's mortality, the drastic change in appearance, the wrapping your head around your whole self image, when most of us have had pretty crappy self images even before our BMXs. Redefining ourselves, how do we accept and love our new bodies. How do we do that? I have found it extremely inspiring to see your photos, seeing that I'm not the only one who looks like this, that my new normal can be lovely, beautiful, sexy, strong, kick ass!

I have been taking selfies since my surgery, four months ago, not something I have ever really done before. And for all the shit people get over selfies, I think this medium has helped immensely in my healing process. Forcing me to look at myself, the one who doesn't even want to look in a mirror, to create my image, to try to look with love at my new self.

Sharing my wardrobe with you, you who are as frustrated and exasperated at trying to feel normal and appear as "ourselves", it has been so cathartic.

So on another level, how do I redefine my sensuality, how do I put those fears away, the thought that because I don't have breasts I can't be sexy? Will I be judged in the sheets? How do you process all of those thoughts? The "will anyone be able to love this" head trip? Fuck it.

I went and bought some new sexy lingerie, robes, pretty things and started taking selfies, trying to see "how is this going to be?" "Who is this new sexy self?" This is not about immodesty, it's about figuring out how to find a lost part of myself in this new incarnation.

I now feel grounded, granted that feeling is pulled out from under me on a daily basis as I go through all of this crap, but I am determined to come out on the other side. I will own this damn body. I will embrace this scarred and fucking beautiful self."

The response was overwhelming to me. An outpouring of love and comraderie. My sisters get it. This whole healing process is a journey that so many of us endure in isolation, many of us face such loneliness while going through it. If social media is good for anything, it's for helping people connect and have a lifeline. It has been for me anyway.

There is so much anxiety over what will people think (about being flat.) It's turned out for me that people who don't know me, don't notice that I'm flat. People who know me are the only ones who notice, the ones who don't know I have had cancer just think I've lost weight.. Nobody cares! So, that saying what other people think of you is none of your business really makes sense now.

So here I am four months out from surgery, I have been making slow changes to reclaim this body of mine. I have cut out alcohol from my diet, changed my diet to a healthier one, started exercising and surrounding myself with the support of friends who can pull me through all of this. I have lost 20 pounds since the surgery and am now "overweight" instead of "obese". Yesterday, I biked 26 miles on my mountain bike – the first time in my life that I have ever ridden that far. I ordered a new bike and signed up to do a 67 mile cycling tour in the Fall. I have never done anything like that before. Feeding the body.

My mother had her Masters Degree in Fine Art. She was a printmaker and ceramicist; she used art to help her process what she was going through during her illness. I do not have a degree in art, but I am an artist who is working mostly in ceramics now. My daughter is a junior in college, an art history major, and a very talented artist. Next up: an exhibit featuring the work of my mother, myself and my daughter. The exhibit will present art that was inspired by the journey of three generations of women artists and how cancer influenced that process. Feeding the soul.

I own this body, I am crafting this life. I am myself, more than I have ever been before. From the muddy swamp emerges the lotus blossom.

#brca #dcis #familyhistory #breastcancer #flatandfabulous #mastectomy #reconstruction #prosthetics #sexuality

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