One Woman Chooses Her Legacy

I was diagnosed with breast cancer in September of 2016 after I found a lump during a routine self-exam. On some level, I was not surprised. My father died when I was 19 from lung cancer. My maternal grandmother battled breast cancer twice, my cousin died from colon cancer in her 40s, my maternal aunt died from breast cancer the year before my diagnosis, and the list goes on. I dare say that, subconsciously, I knew someday I would be that woman, the one in eight who gets breast cancer.

After the biopsy confirmed invasive breast cancer, I was given an appointment at the Breast Center at Yale’s Smilow Cancer Hospital. My husband and I met the doctors who would be my breast surgeon and my oncologist, the nursing team and the social worker who would advise us on how to break the news to our three daughters (then ages 14, 13 and 10). We left the hospital in a daze and pulled into our driveway that afternoon knowing the most difficult part of the day was ahead of us.

Our three girls greeted us with smiles, having no clue that their world was about to be turned upside down. We had told them nothing about my diagnosis, deciding to wait until we had seen doctors and had solid information. Now that a treatment plan was in place, we could no longer put it off. Having to tell my daughters that I had breast cancer was way more painful than getting the diagnosis. I remembered how scared I was at 17 when I learned my father had cancer. To my surprise, only my oldest had questions through her choked sobs. My middle daughter ran from the room and asked to be left alone for a while. My youngest looked at me with tears pouring down her face and asked, "Are you going to die?" I answered, "No, honey. It’s going to be a difficult road for a while and I may get sick from the treatment, but I am not going to die!" With that, she asked me not to talk about it.

That pretty much laid the groundwork for how my girls would handle the next year. I made sure they never saw me really sick. Once in treatment, I still made sure that, when they came home from school, I was waiting for them with a snack and a smile. I cooked dinner most nights and was up early to pack their lunches and drive them to school, regardless of how lousy I felt. But as treatment progressed, I watched my oldest daughter, then a freshman in high school, get that look of paralyzing fear when it was infusion day or test day. My middle daughter seemed uncomfortable around me from the beginning. And once I lost my hair, she had trouble looking me in the eyes when I walked around the house without a wig. Then there was my youngest, my sweet little girl trying to be a caregiver at 10 years old. “Come lay on the couch, Mommy, you are doing too much and I should be taking care of you,” she would say. I knew all too well that each of them was terrified and trying to handle their fears in different ways.

Seeing how they struggled made me remember how I dealt with my dad’s illness at 17. Ever the daddy’s girl, I was determined that he was going to get better because I was going to will it to be so, even though they told us his condition was so far gone it was untreatable. They gave him six months to live, but he was with us for a little more than a year. For a while, I was his caregiver, changing bandages because my mother was too weak in the stomach to look at his surgery wounds. I sat with him even when we did not say much, just to be near. Then his condition worsened, and I became so afraid of losing him that I found ways to busy myself so that I could avoid spending time with him. In my teenage mind, I thought I could get used to the idea of not having him if I just separated myself from him while he was still here. So, I took on extra shifts at work, stayed longer at the library, did anything to avoid going home. Thirty-three years later, I still wonder if he realized I wanted nothing more than to be with him every second, but was wrapped up in my grief and my fears and had no idea how I was going to go on without him.

My girls were not going to have to learn that lesson — not now. I was going to be put in remission and hopefully stay there. My husband looked forward to my treatment ending so that life could get back to normal. Yet, when it happened, nothing felt normal to me. I had a litany of problems: fear that the cancer would come back, pain, exhaustion, memory loss, headaches, anxiety, sleeplessness and an inability to connect with my husband. Cancer had shattered me, and I needed to put the pieces back together. It’s taken time, but I’ve found ways to do that. Still, more than anything, I worry about the impact these changes have had on my husband and daughters. They did not ask for this to happen any more than I did.

I know they are grateful for the way things turned out, but I also realize that they miss the old me. I’m now the person who takes it easy Instead of pushing myself harder than I need to just so everyone will think I’m supermom. The new me forgives herself when she forgets to do something because she did not write it down. This new me is sometimes shy with her husband because of her scars and lopsided implants. But the new me also realizes her body has been through an awful, traumatic experience, and it came through for her. That experience inspired me to become an advocate for women with breast cancer, a labor of love that gives me a sense of belonging and the chance to meet some incredible people with their own amazing stories.

It’s true that I’m not the same person I was before breast cancer, but I’ve created something positive out of that reality — for myself and for my family. The legacy of cancer I am passing on to my children is different than the one my family left me. It’s a legacy of hope and lifting others up, and death is nowhere in sight!

Roberta Lombardi is the founder and president of Infinite Strength, a nonprofit organization in Connecticut which makes medical treatments accessible to underserved patients with breast cancer. She is also the founder and CEO of Infinite Beauty, an intimate apparel brand which is the first on the market with a patent-pending bra specifically designed for breast cancer survivors who have had mastectomy-to-implant reconstruction. She lives in Connecticut with her husband and three daughters.