06/27/2013 03:43 pm ET Updated Aug 27, 2013

Finding Sisterhood: braGGs Reconstruction Bras & BRCA


I have not always been a very good sister. The youngest of two girls, I took liberties with our relationship. Because I could. Five years between us was enough for me to be irresponsible with our sisterhood and for her to be motherly. When our mother passed away at age 39, my sister seemed to fill that role a bit for the first couple of years, whether out of desire or necessity, along with my father, of course, as we all dealt with our own new normal. And, over the years, she has steered me with her subtle suggestions whether on boys (avoid that one) or babies (Go get BabyWise.)

We are different, my sister and I. We don't share the same political ideals (one of us was going to be crying the day after the last presidential election, it was just a question of who), despite the fact that at the core we share the same values. We took different paths to get to where we are -- she is more family-first and I've prioritized my career. Over time, the five years that separate us seem to have become fewer. Until one day, they completely disappeared.

I will never forget having to call her to tell her I have breast cancer. When I found a lump days earlier, I had called her almost immediately. "Let's remain calm. I have felt these myself over the years and they always turn out to be OK," I recall her reassuring me. Tucking my 3-year old son into bed that evening and laying with him as he drifted off to sleep, I sobbed uncontrollably as thoughts of leaving him and his baby brother without a mother flooded my mind and rattled my core. Then, days later, after the biopsies during which the doctor reassured me it was not cancer and I could venture off to Disney World on my planned vacation, I made another call to her after I had the results back. How do you call your sister and tell her you have breast cancer? How do you call anyone with this news? There is no good way. I could hear her breath go almost completely out of her as I delivered the news neither of us ever wanted to hear and both of us deep down in the bottom of our hearts knew someday at least one of us might.

I know my sister carries with her a sense of guilt. We both are genetically predisposed to breast cancer, carrying the BRCA1 mutation (yep, that's what Angelina has too). This means both of us have an 87 percent of developing breast cancer, a 20 percent chance of developing a second breast cancer and an almost 50 percent chance of developing ovarian cancer in our lifetimes. This genetic mutation, inherited from our mother, is highly associated with the onset of the disease occurring at a younger age (typically early to mid 30s) and it's most aggressive form -- triple negative breast cancer, which I was lucky enough to develop myself (that's sarcasm). But, in all honesty, we both live with the disease. Although I have undergone chemotherapy, we both have had double mastectomies with breast reconstruction and hysterectomies. I heard her recently tell someone that she was "surviving the predisposition of developing cancer." That's right sister, you are a survivor too.

In the months following my cancer and our BRCA1 diagnoses, my somewhat infrequent phone calls to my sister because of my crazy, hectic busy life became multiple daily conversations that lasted sometimes hours. With kids shouting their needs in the background, our history was revisited and relived, medical studies were dissected, oncology reports were explained, geneticist advice was thought through, tears were shed, reason was thrown out the window and two sisters learned who they were and who they were going to be. She visited me during my toughest chemo. I visited her during my lightest chemo and after her mastectomies. We moved forward through it one step at time. Somehow we were apart, but in more ways we were together.

One sunny afternoon on a hot July Kansas day, my husband and I were packing up the kids from visiting her family to travel on to see our father. I had finished the roughest of the chemo and was onto just an experimental drug. I still had tissue expanders in (the gigantic rocks that are the middle stage of breast reconstruction surgery), but she had finished her breast reconstruction already. She came down her stairs in a regular bra and tank top as I stood up from bending over to secure the packaging of some boxes. Only one thought entered my head as I saw her, my eyes darting to her chest, "what the h*** is wrong with you!" Her shirt was marked by two concave indentations right at the apex of her new breasts. "See," she said, "we have a little problem."

And that was the beginning. We had been sold short. Lied to. Somebody committed fraud. Come to find out, the new breasts we had been offered and chosen were nothing like our old ones. Searching for a solution to remedy this problem, my sister was instructed to visit a mastectomy bra shop where she was sold prosthetics to wear over her implants -"explants," we called them. It was like wearing four fake boobs instead of just the two. And, they were to be inserted into a mastectomy bra. Hadn't we chosen not to wear those when we went through the surgeries to create these new breasts?

Out of pure necessity, braGGs reconstruction bras were born. We researched markets, gathered information from almost 200 women like us, spoke with boutiques, wrote a patent, hired a designer, launched a successful crowdfunding project, hired a manufacturer, fired a manufacturer, hired another one... the list goes on. And in the midst of finishing chemo, completing surgeries, raising children, among numerous other things, as sisters, we began to build something together for other women whose journey we knew intimately. Breast cancer is a grueling path to walk and in the end you just want to get up, get dressed, smile and be comforted in the little things. Your whole being resonates in the thought of just being alive today. There's no going back to normal, but there is defining a new normal in which together we envision a woman just simply feeling good and comfortable about herself and the life she has before her. Our mission, we decided, is to offer women something that will nurture their sense of beauty, their sense of comfort and their sense of confidence as they live the rest of their lives. On June 12, 2013 our first braGGs reconstruction bras shipped to boutiques and breast cancer survivors, as we opened our doors for business.

A reporter asked me recently if either of us could envision having a different partner or no partner at all in our little start-up, braGGs. Never. Our differences complete each other. Where one questions, the other steers. When one can't recall, the other has filed it away. When one is hurt, the other heals.

Through this journey, I have found shelter in the arms of my sister. And in turn, together, we have found shelter in the wider sisterhood of breast cancer and BRCA.

Sisterhood should never be taken for granted. Lesson learned.