Rebuilding Oneself

I was completely caught off guard when I was diagnosed with early-stage, aggressive-grade, invasive ductal carcinoma, aka breast cancer – in the summer of 2021. With no known family history of breast cancer, I never thought that getting the terrible disease would “ever happen to me”. I didn’t know then that more than 90% of women who are diagnosed with breast cancer have no family history of the disease, and that one in eight women will be diagnosed with breast cancer in their lifetimes.

Based on limited data gathered from a biopsy of the tumor that had invaded my right breast, my surgical oncologist told me that I was a candidate for either a lumpectomy or a mastectomy. Her words rattled around in my brain like remnants of ice in an empty glass. All I could think was, I have to choose to cut part or all of my breasts off? Each option had pros and cons and no one but me could provide the answer.

As my surgery date ticked closer, I worked to understand everything I could about breast cancer and my limited options, so I was making an informed decision. I talked with survivors and scoured the internet hoping that it could somehow just provide me with a solid answer. At the time, I was less concerned about the surgical process to remove my breasts and the cancerous tumor and more concerned with wanting to know if I would need chemotherapy. Scars from surgery can be hidden from others, but losing my hair would be like losing a major part of my identity. I was petrified that a bald head would scream “CANCER” like a flashing neon sign and people would look at me and just see the disease – a sick person.

Thankfully, my oncologist ran a genetics panel prior to surgery, which revealed that my breast cancer case was likely hereditary, a result of an inherited gene mutation. The mutation meant that the likelihood of cancer coming back was upwards of 30%, so just four days before surgery, I opted to have a double mastectomy.

Days after the surgery, biopsy of lymph nodes revealed that the cancer had spread and I would need to undergo 5-months of ACT chemotherapy, followed by two months of radiation. As I began down the path of the hardest fight of my life, I was afraid. I was less afraid of what chemo and radiation could do to my body long-term. Rather, my fear welled up from how others – my family, friends, kids, coworkers, strangers - would see me. I was just learning to face the world without my breasts, but now the reality of living without my hair, was too much.

At 44-years old, I was petrified of the stigmatization of being SEEN as a cancer patient. I wanted to just look and feel normal. Everything happened so fast. Life around me – the needs of family, work, kids, the COVID-19 pandemic didn’t stop while I was fighting cancer. How my hair looked and felt was so intrinsically fundamental to my identity, my body image, my femininity – and how others viewed me as a healthy able person. Driven by fear of the cultural biases that come along with the stigmatization around being seen as “a sick person”, I decided to have a “hair halo” created. A hair halo is a type of wig headpiece made using my own hair. It only covers part of the scalp, because creating a full wig requires more than one head of hair. It was my security blanket, my plan for support – there if I needed it.

Unexpectedly, as my hair began to fall out, I found appreciation for my shiny bald head. I loved not having to wash/dry/style my hair, especially when I was feeling so yuck from the chemo. With ease, I could throw on a hat and pop onto zoom calls for work. With so much of my body breaking and failing in response to the chemo, I chose not to put any of my limited energy into trying to wear a wig or the hair halo. Embracing the bald felt empowering, at times. It was a badge of honor for enduring what I was submitting my body to. But at the same time, I didn’t want to conform to the stereotypical appearance of a cancer patient. I didn’t want strangers to see my experience. It was all so stressful, but I was too weak to disguise it.

After my breasts – including my nipples - were surgically removed, I often thought about what defines MY femininity. Merriam-Webster.com Dictionary defines “Femininity” as: the quality or nature of the female sex: the quality, state, or degree of being feminine or womanly. Now, we could philosophically discuss the attributes of femininity for days, but I think we can agree that it’s a social construct informed by biology and culture. So, when it came to deciding how I wanted to physically look in the world after breast cancer, there was no clear answer.

That decision was made a little easier, since there are only three options after a double mastectomy – stay flat chested, have implant surgery or have surgery – called DIEP Flap - to move skin, fat and blood vessels from one part of your body to the chest to “rebuild” breasts. Each option holds pros and cons ranging from how I feel in and about my body, to varying timelines and levels of risk related to surgery and recovery, to cultural expectations and biases. These were all a big part of this decision-making process for me. We live in a culture in which breasts play an important role in how society views people who identify as female, and in response - how we view ourselves. For me, since my early teen years, my breasts were part my identity and femininity - both maternal and sexual.

While I’ve been unable to say for certain that my decision to reconstruction is fully my own and not that of societal expectations, I decided it didn’t matter. What others think about my choice also didn’t matter. I’m going to live in this body for the rest of my life, what mattered was me making a decision to reconstruct or not based on what’s best for my physical, emotional and phycological wellbeing. After learning that there’s a 50% chance of failure with implants after having radiation, the choice was easy for me. I decided to undergo the DIEP Flap reconstruction procedure. I worked for months to be physically and mentally prepared for the surgery, focusing on good nutrition, sleep and exercise.

I joined a dragon boat team to help me quickly rebuild my strength and stamina. In the months between finishing active treatments and reconstructive surgery, I attended my first dragon boat race in Victoria BC, Canada and brought home a gold medal. I was ready to take on another fight to rebuild me after breast cancer.

Like the double mastectomy, the DIEP Flap operation would forever change my body, but this time the goal is not to save my life, but to rebuild my body. I was so excited to have the uncomfortable tissue expanders removed. One had failed and felt like I was carrying around a piece of Tupperware beneath the skin on my chest. While I knew this was the right choice, there are risks with any surgery.

Creating “breasts” using belly tissue results in four surgical sites. A hip-to-hip incision across the lower abdomen, incisions at both breast sites and a “new” belly button. During surgery, two incisions are made over the lower abdomen: a football-shaped incision (like a tummy tuck) around the tissue that will be used to reconstruct the breasts, and another around the belly button. The tissue is removed and transplanted from the lower abdomen to the chest to reconstruct the “breasts” and the belly button is left in its original location, thought a new hole is surgically created for the belly button to pop through.

I’ve had people tell me that I’m “lucky” for getting a “tummy tuck” and new “perky” boobs. To be clear, having had cancer makes no one “lucky”. While reconstructive surgery does not remove cancer, it is considered medically necessary because it works to restore function and “normal” appearance after my breasts and nipples were surgically cut off my body. I’m still working to cope with this reality. My body is no longer normal. Restoring a breast isn’t considered a cosmetic procedure, since it’s considered part of the treatment of a disease. The Women’s Health and Cancer Rights Act (WHCRA) ensures insurance providers provide coverage for women with breast cancer who choose to have their breasts rebuilt after a mastectomy. As I transition into living life as a breast cancer survivor, having opted to have the DIEP Flap surgery has helped to improve my sense of wholeness and with it — wellness and self-esteem. Unlike implants, my breasts are warm and move as my body moves. Most importantly for me, they were created using parts of me.