#xs

In the summer of 2013, with three young children at home, Caroline Johnson was delivered the kind of unrelenting clarity on life-altering news can deliver: It’s Cancer.

Caroline’s son was born with a rare genetic deletion now known as BBSOAS. His condition, a mosaic of epilepsy, developmental delays, and autism, became the crucible in which Caroline learned the art of advocacy. “The medical and healthcare experiences with my son equipped me to advocate for myself after my breast cancer diagnosis,” she says, “I asked important questions to all health professionals, sought second opinions, and received treatment that consisted of surgery, chemotherapy, radiation, and targeted hormone therapy.”

As Caroline began to walk the thorny path from surgery to chemotherapy to hormone therapy, she learned a harsh truth: all of the pink ribbons, the “race for the cure,” and all of the filtered faces of survivors smiling from billboards were sanitized symbols of a very brutal reality.

“…breast cancer is not the “easy cancer” she reveals. “Once the initial shock of diagnosis wore off, I became well aware of the brutal facts: a significant number of women diagnosed with breast cancer face metastatic disease, meaning their cancer could spread to other parts of the body. The statistics can be sobering.”

According to the American Cancer Society, approximately 30% of women diagnosed with early-stage breast cancer will subsequently develop metastatic breast cancer (MBC). MBC is stage IV breast cancer, and there is no cure.

It’s here that that thorny path Caroline walked diverged. She began to channel her energy into advocacy, something that had already been a spark inside her, blown into a burning flame. She founded Twisted Pink, a non-profit on a mission to fund the research for metastatic (Stage IV) breast cancer (MBC), and set her sights on creating various support programs for patients and their families and acknowledging the exhausting emotional toll that a cancer diagnosis places on them.

“Once you have breast cancer, you are unwittingly inducted into a community—a club you never wanted to join.” Caroline shared, “I encountered fierce warriors, compassionate souls, and people whose resilience inspired me daily. I met women and men who had fought battles for years, sharing their stories of hope, grief, and empowerment. These encounters filled my heart with a profound sense of camaraderie.” She quickly understood that while everyone’s journey down the path is different, they all share an unbreakable bond grounded in mutual support and understanding.

“Entering into this advocacy partnership broadened my perspective on life in ways I could never have imagined. I discovered that there are many ways to live fully, even when stricken by illness. I found joy in the mundane and beauty in the little moments of joy that life offers. One of my most Caroline and her son, 2013cherished experiences in recent years has been seeing my daughters attend college and graduate. This is something I never thought possible eleven years ago, after my breast cancer diagnosis. I truly thought my life would be ending after waking up from surgery and watching my husband and best friend with tears in their eyes as they waited for me to regain consciousness.”

Caroline and her son, 2013

“Creating Twisted Pink has allowed me to serve a greater cause, and it enables healing for myself. Each day our team engages with fellow survivors and support families, we are reminded of why advocacy is vital. Reflecting on my journey from that fateful diagnosis to the vibrant life I lead today, I recognize a profound truth: adversity can illuminate paths we never thought possible.”

While going through treatment myself, I learned that very little funding (only 7-10%) of research dollars go to support MBC research, and with 20-30% of people with early-stage breast cancer having a recurrence, this was not enough funding.

Caroline advises everyone to remember there is hope. You must look for clinical trials, seek second opinions, find an oncologist you trust, and never EVER be afraid to challenge the status quo. You are in charge of the decisions made around your own treatment, and please remember that Twisted Pink’s doors are always open to you. After learning about Caroline and her mission, it’s clear that it’s about so much more than cancer. Twisted Pink is about the ability to find purpose amidst chaos and forge connections in places where one can feel isolated. “Adversity,” she says, “can illuminate pathways we never thought possible.”

“If it wasn’t for an organization like Twisted Pink, Jenny may not have lived anywhere close to another 12 years. Without dollars being funded towards research which is earmarked for metastatic disease, Jenny and many other women and men like her, would have no hope. Thank you!” -Dr. Robert Alderman, Carmel, IN

Read Jenn Griebau’s Story

My name is Jenn. I am 46 years old & have been fighting metastatic breast cancer for the past 7 years. I was originally diagnosed with stage 2b breast cancer 10 years ago. After a year of treatments, I heard those magical words – cancer free. This only lasted 2 ½ years before a hip fracture proved to have been caused by a tumor. It was then confirmed my cancer had returned.

LEARN MORE: https://www.twistedpink.org/jenn-griebau