Generational Secrets, Generational Strength: My Path to Advocacy

My mother never really understood her mental health battle and neither did I until now. You see, I didn’t grow up with my mother in my life as a young child. In fact, I was always told that she wasn’t able to take care of us due to her diagnosis of schizophrenia. It wasn’t until my mother passed away in 1991 at the age of 41 from a glioblastoma, that I finally understood her long and heartbreaking battle with mental health struggles and hereditary cancer.

Understanding the weight of generational
As I look back on my journey as her daughter with the clarity of adulthood and motherhood, I’m realizing, that she did the best she could, even when it came to naming me. She was a 16-year-old giving birth in the 1960s, and my birth actually triggered an episode that led to her being hospitalized for a length of time in a mental health institution. Therefore, when she told the hospital she wanted to name me “Winona"–which by the way is Native American for first born–the hospital spelled it incorrectly on my birth records and gave me the name “Wenora” instead.

The irony is that she actually ended up loving the name, and she would often remind me that our family had Native American heritage. But what I truly wish she could have shared with me wasn’t folklore, it was our generational health history. The truth. The patterns. The risks. I needed to know how heart disease, rheumatoid arthritis, mental health and cancer ran in our family.

The life-altering power of early cancer screening

It wasn’t until my own diagnosis of colon cancer in 2011 that my aunt revealed a life-altering detail, my grandfather had died of colorectal cancer at the age of 38. That information, had it been shared earlier, would have completely changed my medical journey. Knowing my family history would have pointed to Lynch syndrome symptoms long before my first diagnosis. Early screening might have caught my cancer sooner. Even more, my aunt told me my grandmother died of heart disease at just 42 years old, while holding me, her 6-month-old grandbaby, in her arms.

I don’t share any of this for sympathy, but to bring a sense of urgency and awareness about the dangers of hidden secrets around family health. My cancer journey ignited something in me. It pushed me, strengthened me, and ultimately inspired me to become a fierce and passionate patient and research advocate. Sharing my story, openly, honestly, and unapologetically, has become my way of breaking generational silence. Talking to my children and extended family about our health history, and encouraging them to get genetic testing, is not just important to me; it’s a responsibility. As Maya Angelou said, “When you know better, you do better.” Advocacy is how I choose to do better. It’s how I help patients find their voice in the decisions that affect their lives.

Identifying Lynch syndrome symptoms and MSH2 mutations

I found out two things with genetic testing. One, I’m actually only 0.0003% Native American and about 18% Irish—so much for that family myth! Second, I learned something far more important: I carry the Lynch syndrome gene with an MSH2 mutation.

Lynch syndrome dramatically increases the risk for certain cancers, especially colorectal and endometrial cancers. My life reflected that truth long before I knew it. I was diagnosed with Stage IIIB colorectal cancer at 45, endometrial cancer at 49, and later, basal cell carcinoma.

Transforming pain into a mission for survivorship

My connection to mental health and cancer is deeply personal. I’ve watched two of my younger brothers struggle with mental health challenges, and one of them also lost his life to colorectal cancer three years ago. I’ve faced cancer three times, and each diagnosis changed me, emotionally, physically, and spiritually. They taught me that survivorship isn’t just something you achieve after treatment; it’s a way of living. A choice. A daily practice.

If I could speak to my younger self, I would tell her that none of this was her fault, not my mother’s absence, not the secrecy around our family’s health, and not the cancers that came for me. Mental health and cancer don’t happen in isolation; they ripple through families and communities. But so does healing. What I didn’t receive as a child—answers, clarity, transparency—I am determined to give to my own children and grandchildren.

Advocacy as a celebration of life

Today, survivorship, for me, means using my voice to make a difference. It means transforming pain into purpose. It means helping others understand the power of early screening, mental health awareness, clinical trials, and participation in research that can change or even save lives. I celebrate survivorship by lifting others up, by sharing hope, and by reminding people that even in the hardest moments, there is still strength, purpose, and a future worth fighting for.

This is my story, but it is also my mission. And every day, I choose to live it with intention, courage, and a deep belief that healing doesn’t just happen to us. Sometimes, we create it.