Breast Cancer, Mama Mode and Me

As told to Alexandra Frost

I told my doctor I had breast cancer before he told me — I’d just finished helping my mom through her own breast cancer journey, I’d had skin cancer before, and I consider myself very in tune with my body. What I wasn’t expecting, however, was the lessons I’d learn about relying on others and giving up control. I’ve always been a planner, someone who takes charge and handles things myself. That was all about to change.

I noticed a pea-sized lump in my breast that I would get during every menstrual cycle, except that it would move around each time. While the doctors thought it looked fine, I insisted on a core needle biopsy, which they didn’t think I needed because the size hadn’t changed. But, I knew something wasn’t right and insisted.

My doctor confirmed my gut feeling when he called while I was shopping for school supplies with one of my three daughters and heading to pick up another daughter from softball practice. I told my doctors on that call that I wanted a double mastectomy and reconstruction. I had no interest in playing games to see if and when it would come back.

While the doctors insisted I only needed a lumpectomy, a less invasive procedure, I said “No, I have a mother with cancer and a history of skin cancer.” I wasn’t allowing them to not listen, jumping into what I call “mama mode,” which allows me to take control of what needs to happen next. It’s simple. In mama mode, I know what to do, and I make it happen. I make plans and execute them quickly and efficiently, without relying on others.

I looked toward my upcoming surgery with a “let’s get this done” attitude. I wanted to put it in the past. I warned my doctors going into surgery that I’ve always been considered a medical misfit, and if there’s a one-in-a-gazillion chance something will go wrong or a strange side effect will manifest, I’m the one it will happen to. Unfortunately, this surgery was no exception, and my plan didn’t quite go as planned.

The doctors came out of the room to my family awaiting the news. They were ready for some positive information. Instead, the doctor explained that the cancer had metastasized, meaning it had spread into the lymph nodes, now stage 3 not stage 1. I would start chemotherapy the next month.

All three of my daughters, ages 11, 13 and 15, reacted quite differently to my cancer journey. My oldest’s reaction resembled my “mama mode,” as she jumped in to do dishes and laundry, driving me to the bank and appointments. My middle and more introverted daughter slept at the foot of my bed after my surgery, which I only found out a few nights later when I tripped over her on the way to the bathroom. My youngest retreated inward, taking solace in art.

My village rallied around me, with one moment in particular standing out as I approached the beginning of chemotherapy. My dad asked a Broadway wig maker to make a wig for me, and a hair stylist friend came over to help cut a small piece of each of my children’s hair to weave into the wig. Empowering my daughters to do something therapeutic for me helped them feel more comfortable and less scared. They didn’t have to see me lose my hair. It was the last thing I had control of. Throughout the entire journey, we were very open with the community about our family’s situation, and we were humbled by an outpouring of help, including a meal train that provided three meals per week for a whole year.

As I recovered, I found out that, while oncologists excel at diagnosis and treatment, the entire process is less than holistic and leaves patients struggling to get all the support they need during recovery. I found a rehabilitation center called TurningPoint Breast Cancer Rehabilitation, which filled the gaps for everything from validating pain to specialized physical therapy to adapted Pilates classes. They offered nutrition advice, counseling and so much more, making my journey through chemotherapy, radiation and beyond bearable. I realized I no longer had to do this by myself. My daughters saw me regaining confidence. Unfortunately, my insurance wouldn’t cover this life-changing recovery center, so I ended up using the center’s flexible payment plan to pay what I could, as I was able, so I could receive the care I needed.

My daughters decided they wanted to help support others’ journey through the facility’s support. The idea came about one night at dinner when my eighth-grade daughter Lauren said, “I want to do something. I want to give back.” My daughters started to brainstorm and eventually decided to create a walk. This small step led to them building an entire 503(c) nonprofit, called Strides for Survivors, for which TurningPoint is the sole beneficiary. Over five years, they’ve raised just shy of $50,000, which funded fitness classes, specialized PT, free massages and community education.

It wasn’t just the amount of money they raised that floored me, but the inspiration I derived from seeing my daughters team up and rally behind a cause. Their nonprofit work lives on still; the walk has continued as two of my daughters are now college-aged and have even brought the nonprofit’s initiatives to their school and sports teams. I credit my recent celebration of five years cancer-free — remission — to their support. It’s a liberating feeling, and I couldn’t feel more loved. I’ve learned the power and impact of family, and now I can let go and let people help, which is a new awakening.

But don’t think mama mode doesn’t still come out now and again.