My mother was nine when she had her first brush with breast cancer. Her mother had one of her breasts removed. It was 1966, and many, many years before reconstruction would be standard procedure. The sandbag that she wore inside her bra was heavy and uncomfortable, but she wore it, clinging to the shape that made her feel like a woman. Then, years later, she would have her other breast removed.
It seemed to be a rite of passage for the women in my family.
On trips to North Carolina as a child, I would sneak into my grandmother's bedroom and play with (and let's be real, sometimes eat) her fancy, pale green tubes of Clinique lipsticks. And over a chair or on the end of her bed, you’d find her giant bra and those smooshy, baby-powder scented faux breasts. They were as big as my head and were wonderful to squish and poke, retaining their shape.
My grandmother's sister's life was taken by this cancer. My mother's sister's life was never the same after her cancer; the treatments wrecked her body and she lost her life a few years ago. As you can imagine, these events had a profound impact on my mother. She was always on the defensive, waiting for the monster to creep into her life and threaten to take it all away. She spent her whole life living in fear of breast cancer.
"If I ever have a scare, I'm going to just get rid of the problem," she would say. A prophylactic mastectomy is not something many people are familiar with, but with my family history, it was my mother's reality.
I found myself in a tiny waiting room with my mother, women all around us in little matching pink robes, waiting for their turn to have their breasts smooshed and tortured, mindlessly watching Maury Povich or some other daytime trash TV, all waiting for their names to be called. The rest of these women, I'm sure, would go home healthy, albeit a little sore.
After her mammogram, she redressed and we were ushered into another waiting room, this one much larger and empty. We sat together in the middle of a row of chairs, alternating between spells of silence and my wise-cracking comic relief. If I could make jokes and make her laugh, maybe all of this would be less scary. I’m not so good with the nurturing in my adult relationships. I have a thick, layered, crusty exterior that manifests itself in hard situations like this one by making jokes and sitting in uncomfortable silence.
Indeed, they had found "something" and punched a hole in my mother's breast to determine what was in there, causing this lump her breast, those same breasts that nursed me for more than three years and nursed my brother and sister before me. I recall my mother's silent tears rolling down her face, but no sound coming from her. She was, and will forever be, so brave.
In the end, they said that the something was actually nothing, likely calcified breast milk from 20 years earlier, just hanging out in her tissue like a sick, long-winded practical joke. But my mother was resolved. She was going through with it.
You grow up thinking something is one way, watching my grandmother in her kitchen cooking with a great, big cavernous space above her round belly. I would sometimes catch her while she was changing, and the lumpy, shoddy scars across her chest with no nipples just seemed normal. It was just the way she was. It wasn't until 1998 that reconstructive surgery was something covered by health insurance. As an adult woman, with full, round breasts now, I can't imagine what it must have felt like to live the last 40 years of her life with no nipples, no breasts, no sensation. As women, we wrap up so much of our worth in our appearance. What would life be like with no breasts?
My mother's reconstruction was difficult. They did a procedure called DEIP flap reconstruction wherein they split my mother across her belly, took out her round, wiggly bits there and used that tissue to rebuild her breasts. The incision was brutal and she had to go back for several revision surgeries. Ultimately, an infection left her with a large section of her abdominal wall removed and replaced with mesh. She has to spend the rest of her life wearing compression garments, holding her together. There is no more yoga in my mom's future, nothing that could strain her belly.
But there also is no cancer and very little risk of that same genetic mutation creeping into her life and threatening her again. There was no chemo and no radiation. She didn’t lose her hair or lose tons of weight. She faced her fears and this monster head-on, and now, she has breasts. Under her clothes, they look very different from mine or yours, but they give her that same full, round, feminine shape. They tried to pucker her tissue to make faux nipples, but that didn't take. She had a quote tattooed, inked backwards so she could read it in her reflection, "The warrior within me emerged," across one and, "she knew just what to do," across the other.
And after her surgery, after this "unnecessary" procedure that many of her friends questioned, in the pathology report, they found cancer. It was there the whole time, elusive to the mammograms and breast MRIs. It was there and, deep down, she knew it all along.
Modern medical science helped us pinpoint the location of this monster in my mother’s DNA and, using that information, they were able to screen my sister, Julie, and myself for the gene mutation as well. She has it and I do not. It's called BRCA1, and having this gene increases your risk of breast cancer to 87 percent and your risk of many other cancers is increased as well. My brother was tested later and he also has the gene mutation.
My sister started to develop her plan of action. She was slow to make a plan at first, not yet 30 years old when we all sat in that room at Emory University, receiving our results. She had two children and a husband and wanted more children. I was in a really bad place in my life, still reverberating from a terrible divorce, a single mother of a young son and desperately trying to find my way. I was angry when the results came for my sister. I'm the tough one. I was the one who had been to hell and back... I was the one who was conditioned to deal with monsters, not my sister. I think we all know that if it had been me and not my sister, it would have been too much for me to carry along with all of the other baggage I was lugging around.
Last year, we had plans to volunteer for the Susan G. Komen Breast Cancer 3-Day in Atlanta. I broke my ankle days before the event and couldn't go, but Julie went ahead with my mother and a few other friends. I wasn't there to provide her with comic relief and, I wonder, if that was part of the course of events that prompted my sister to start her battle with this invisible monster. Maybe because I wasn't there to crack jokes and make her laugh, she was able to really look into the faces of the women walking 60 miles with buttons on their lanyards, "I walk for my mother," "I walk for my daughters," and realize that these women either lost loved ones or were, themselves, almost lost to this cancer.
Whatever it was, she came home different. She came home determined. She made a plan and now, four months later, she packed her bags and headed to Charleston, S.C., to one of the best breast cancer reconstruction facilities in the country. She's following in my mother's footsteps, facing this beast and telling it, "Nope. You're not going to get me." She's taking her life in her hands and making sure that there will BE a life for her to live, for her daughters and her son to have a mother well into their adult years. She is choosing to never have to let her body be ravaged by chemotherapy and radiation.
I'm so proud to be a part of this lineage of women, even though this cancer lives inside so many of us. I think about the different sort of life that my sister's children will have, growing up with a courageous mother taking the power of modern science and telling this cancer what's what.
My sister's oldest daughter will be 9 year this, the same age that my mother was when breast cancer first came into her life. Statistically, at least one of my sister's three children will have this gene as well, but the entire course of their lives will be different from what my mother's life was. They will grow up with women and men in their lives who didn’t wait for the cancer to get them. More than anything else, I hope that they will grow up with hearts full of the same hope and courage that overflows from my sister and mother.