Robyn Barger, a Weston mom to Ben (age 11), Cami (age 9) and a 150 lbs. bull mastiff named Duke, was busy with year-end school celebrations and getting her kids ready for camp, when she found a lump in her breast. A few days later she received the terrifying diagnosis of early stage triple negative breast cancer. Robyn admits the only thing worse than being diagnosed with cancer is undergoing chemotherapy treatment. However, she never loses sight that she was so fortunate. The word “grateful” forever sketched in her heart.
Previously in Institutional Sales at AllianceBernstein, and now Director of Recruiting at Huntress Partners, Robyn is bravely sharing her breast cancer experience to inspire other women. She’s the team leader of 26 friends, many of whom have also been affected by breast and ovarian cancer, raising over $29,000 to fund cancer research at Memorial Sloan Kettering Cancer Center earlier this year. Robyn also helps fundraising efforts for Pink Aid – a Westport-based charity that brings compassion and dignity to underserved women in Connecticut undergoing breast cancer treatment. We asked Robyn some questions about the life-changing experience she has had, and she was incredibly generous to share so openly with us. Thank you Robyn; you are a source of strength, inspiration – and hope – to so many.
“Courage is being scared to death…but saddling up anyway” – John Wayne
How I was diagnosed
I NEVER in a million years thought breast cancer would happen to me. Cancer happened to other people and other families. We are a family with no history of ANY type of cancer. I was young, ate healthy, exercised daily, never smoked, went for annual check-ups – I was doing everything right. Yes, I had dense breasts which always meant longer appointments– mammograms always followed by ultrasounds. I was also closely monitored. For the past few years, my images showed a small cyst in the lower quadrant of my left breast. No one ever gave me any reason to worry, so I never did.
Three months after my last bi-annual ultrasound, my hand grazed my left breast one night in bed. I felt for the first time that small cyst. It moved and hurt which I rationalized couldn’t be anything serious because cancer didn’t hurt. When my gynecologist immediately referred me to a breast surgeon, I still wasn’t worried. Even when the surgeon suggested we aspirate the cyst and the results came back abnormal, I thought it was just an infection. It wasn’t that I was ignorant. In my mind, I always easily glided through life. Similar to life’s other challenges, I would come away from this experience unscathed. That mindset instantly changed, along with my life, on July 2, 2018 driving to Westport’s annual fireworks celebration. I was stuck in traffic next to my 8 year-old daughter in the backseat of my friend’s car when the surgeon called with my biopsy results. I could only listen when she told me that I had cancer.
A breast cancer diagnosis is a truly devastating, shocking and overwhelming experience. Not only was I dealing with the emotional challenges of trying to come to terms with my diagnosis, I was immediately thrown into a world of science and medicine. I learned not only were there different stages of breast cancer, but also different grades detailing the cancer’s aggressiveness and how quickly it spreads. I also learned that there are different types of breast cancer, some being harder to treat than others. I was tasked with processing an enormous amount of scary information, most of which I didn’t fully understand, while also trying to find the very best medical care team. I didn’t have weeks or months to become an expert on breast cancer with the luxury of interviewing different doctors and treatment plans. My cancer was aggressive and growing each day untreated. Thankfully, I had friends in the medical profession who took the burden off of me and my husband, helping us to navigate, schedule appointments, and guide us towards decisions.
The diagnosis seemed surreal. I woke up every morning for two weeks, sleeping only with the help of hefty sleeping aids, turning to my husband saying “I just had the most awful nightmare that I was diagnosed with breast cancer.” The days after being diagnosed were spent getting MRIs, body scans, bone scans and additional biopsies. The worst part was the stress of waiting. Waiting for information to ensure the cancer hadn’t spread elsewhere in my body. When I think back to my initial diagnosis, I still feel sick to my stomach. I was scared of the unknown, but more overwhelmed with sadness for my husband and children.
I broke out in shingles after finding out that not only did I have the most aggressive type of breast cancer – triple negative – treatable only by lots of chemotherapy, I was also BRCA positive. A BRCA mutation not only increases the risk of developing breast and ovarian cancer, but other types of cancer such as pancreatic and melanoma with a 50/50 chance of being passed to my children. The shingles was a result of stress and my doctors wouldn’t let me near the hospital until I had a few days of medicine in me. In hindsight, shingles was the very best thing to happen. There were very few things in my control and my mental state was one of them. It was a pivotal point in my journey. I had to accept my cancer diagnoses and put on my “big girl panties” (as a female Weston police officer once told me to do when I was stuck in an ice storm shortly after moving from NYC). So, I decided to stop panicking…and stop researching on the Internet. Having breast cancer was not going to define me. I was going to turn cancer into a positive life affirming experience facing it head-on with grace, ferocity and courage.
Getting through treatment
It sounds so cliché, but I never knew how strong I was until strong was my only choice. I had to remain optimistic and active because of my kids. They were about to see the cruelty of the disease up close and personal. We waited until my treatment plan was set and had somewhat of a timeline to share with them to break the news. Although unbearably heart wrenching, we were very honest and open about my diagnosis. I was curable, but the path to get me there was going to make me very tired. We spoke about the side effects of chemotherapy and its impact on the family. I was most worried about my kids’ embarrassment that their mom would be visibly sick, possibly losing my hair and eyebrows. We tried to keep a sense of humor with them and focus on the positives such as weekday sleepovers at their friends, the rotation of home-cooked meals, an everlasting supply of sweets from family friends, their mom turning into a couch potato and my lack of parenting. As a result, they were unbelievably brave and resilient.
I had 16 rounds of chemotherapy followed by a bi-lateral mastectomy. I did cold cap therapy to prevent losing my hair at the suggestion of my oncologist. If I looked in the mirror and didn’t see myself sick, I wouldn’t feel sick. Keeping my hair wasn’t about vanity, but rather maintaining a sense of identity and control. By wearing a soft helmet that has liquid circulating at a temperature around 26 degrees, cold capping restricts chemotherapy drugs from reaching hair follicles. It would have been easier to do chemotherapy without cold capping. It is freezing cold, it hurts, and it makes chemotherapy sessions go from 1 hour to 4. Cold capping wasn’t successful for me, but I was thankful for the extra weeks with my hair. I could not fathom, within a few weeks, being diagnosed with cancer, starting chemotherapy, and losing my hair.
The treatment was grueling. The first part of my chemotherapy was known as the “red devil”- essentially mustard gas infused into my veins. The last 12 treatments were milder, but chemotherapy is cumulative so the side effects became worse. However, I never gave into the tiredness and tried my best to function normally. I was living proof that cancer treatment had improved dramatically over the years. I tried to forget Hollywood’s images of cancer patients, embarking on my own journey. I declined all offers to speak with other women diagnosed with breast cancer. Having cancer is similar to being pregnant- everyone has a story and advice to give. I respectfully declined all offers of CBD oils, eatables and supplements. I put all my trust into my oncologist who assured me I would be skiing by January (which ended up being true) and followed her exact orders. Chemotherapy was going to allow me to see my children grow up. Being a competitive person, I was going to “do” chemotherapy in the best possible way. My husband and friends teased me about my need for affirmation that I was the best cancer patient. Almost immediately, I could feel the tumor decreasing in size. The chemotherapy was doing its job. I was determined that cancer was going to be just a year of my otherwise healthy, long life.
Exercise had always been an essential part of my life. When my oncologist urged me to continue through treatment, I wasn’t sure she understood the intensity of my daily workouts for the past six years with my trainer, Herman Walker. I immediately gave away the yoga mat I bought thinking gentle yoga would be my only source of exercise through chemotherapy, and went back to my group fitness workouts. Exercise provided me a sense of control over my body and mind. My anxiety lessened by seeing the unstoppable strength of my body. Exercise also helped with fatigue and to manage side effects. I would get chemotherapy on Thursdays and be right back at the gym Friday mornings sweating out the toxins. A few times I went to the hospital early in the morning for shots when my white blood cells were low and still made my 9:30 class. My treatment for breast cancer became chemotherapy and exercise.
The silver lining
Cancer taught me so much, but most importantly how to find gratitude. I am grateful to have been diagnosed with early stage breast cancer. My story would have a different ending had I discovered the lump only weeks later or procrastinated having it examined. I am grateful to have been 43 years old when diagnosed having my desired family of four. I am grateful to every doctor and nurse, especially mine, who have dedicated their lives to managing breast cancer. I knew within minutes of meeting my oncologist that under her care, I was going to be okay. I am grateful to the countless organizations that raise money to fund research and the women who battled this disease before me. I am grateful to my new perspective on life. My choice to find happiness and enjoy every moment of it including the tough ones. I am grateful to always find laughter and see the humor in every situation. The power of humor was my top coping technique and a wonderful tool to take away the sadness, bond with others and remain optimistic. However, I am most grateful to my enormous support system. The outpouring of love and kindness has forever changed me. The positive influence and encouragement of my friends and community were overwhelming. The endless compassion and those connections gave me enormous strength. With so many people rooting for me, there was no way I wouldn’t beat cancer.
Life after cancer
There is an underpinning feminist element of going through breast cancer. Nothing exemplifies the strength of women and sisterhood more. Even though I lost symbols of my female sexuality, my breasts, hair, and ovaries, I feel more confident and empowered than before cancer. It’s because of women solidarity that we don’t have to whisper “breast cancer” anymore. We have become advocates for ourselves by openly speaking about its physical and emotional impacts. Although I wish I would have met them under different circumstances, I have come across the smartest, most compassionate and strong women – some of whom I owe my life to because of their medical expertise and others I owe my sanity to, finding camaraderie having also been treated for breast cancer.
Hopefully by sharing my story, I will empower other women to not only support each other, but bring more awareness to breast cancer. They say each of us are at a higher risk of developing breast cancer simply by having breasts. Until there is a cure, detection practices like mammograms and self-exams are the most important ways to catch breast cancer early and subsequently offer better chances for survival.
A new recommendation says that Ashkenazi Jewish ancestry is enough to consider genetic testing for BRCA mutations even without a known family history of cancer. Men should be tested too. Not only can they pass the gene to their children, they are at higher risk for certain cancers such as prostate and pancreatic. If I had DNA testing, my breast cancer would have almost certainly been prevented. We had no known history of cancer in my family. After my diagnoses, my parents and siblings were tested. The gene was passed from my paternal side of the family most likely via my grandfather. My brother has it as well. Every Ashkenazi Jew should be speaking with their doctors and get tested.
I know that I am lucky and I don’t take it lightly. I had a complete pathological response which is the optimal outcome for Triple Negative Breast Cancer. That means the chemotherapy eliminated every single cancer cell in my 1 centimeter tumor and likely any cancer cells that may have been floating around in my body. My life took an unexpected turn when diagnosed with breast cancer at age 43, but everything from that point went in my favor. I’m determined to create good for others through my experience. An important component of my healing is giving back and helping other women. My hope is that by the time my children need to be tested for BRCA, there will be a cure.