For the Rest of His Life: A Sister’s Journey Through Cancer and Advocacy

I thought I’d be his big sister for the rest of my life…not the rest of his. Cancer is cruel like that. It interrupts plans, steals futures, and leaves you with questions you can’t ever fully answer. After I finished my own battle with colorectal cancer in 2014, I received a phone call from my younger brother, his battle was just beginning.

I’m the oldest of five: three brothers, one sister, and me. If the hospital had spelled my name correctly, Winona, meaning “first born” in the Native American tongue, it would have fit perfectly. I was the first born, the big sister, the caretaker. The one who always looked after everyone else.

A childhood defined by caretaking and resilience

Growing up wasn’t easy. Losing one parent at a young age and watching the other struggle with mental health challenges, only to eventually pass away from cancer, shaped every part of our childhood. But we stayed together, thanks to the generosity of family friends who opened their home when we needed one most.

As the big sister, I took my role seriously, fussing over my siblings, scolding them when necessary, and carrying guilt when I was old enough to leave home and start a family of my own. Still, I was always just a phone call away, and they used that lifeline often. Sometimes I got angry at their choices, but they were my baby siblings. Someone had to look out for them. My younger brother, the fourth in line, struggled the most. His mental health challenges were partly inherited from our mother and partly shaped by difficult life choices. At least once a week, I’d get a call from him asking for food, clothes, a visit, or simply someone to talk to. He lived most of his life in a nursing home, and I understood what it meant to have freedom taken away, so I made sure to show up for him consistently.

Navigating a dual diagnosis of cancer and mental health

Nothing prepared me for the call I received in 2014 when he told me he had been diagnosed with metastatic colorectal cancer. It felt like the air left my body. I had just finished walking that path myself. I knew what lay ahead.

However, his journey would be more complicated, every oncology treatment had to be weighed against how it might affect his mental health medications. Some days the process felt experimental, especially when pausing his meds triggered hallucinations and made him feel unmoored from himself.

I had been so focused on surviving my own cancer diagnosis that I never imagined it would come for my immediate family so soon. Shortly after my diagnosis, I learned I carried an MSH2 mutation, confirming Lynch Syndrome. I suspected he did too. I tried to talk to my brother about it, about genetics, about what it meant for our family, but mostly, I tried to keep him encouraged. For eight years, we battled together. We found pockets of joy, small things he loved, shared in the limits of what was possible inside a nursing facility.

The heartbreaking reality of metastatic disease

Eventually, I watched him grow weaker. His steps slowed. The walker became his constant companion. And I could see, day by day, life quietly slipping away. He was only 44. Three more years passed, and then came that call: “Please come. There is nothing more we can do. We don’t expect him to live through the night.”

This is why I hate cancer.
This is why I am so passionate about cancer research advocacy.

Because maybe, just maybe, if he had lived a little longer, he might have been eligible for the Tri-Ad5 clinical trial vaccine I later participated in. Maybe his future could have looked different.

Turning grief into action through patient advocacy

He wouldn’t want me drowning in sadness, in fact I refuse to do so. He’d want me to fight, to educate, and to bring awareness. To be involved in medical research so others won’t have to endure what he endured. And I honor him every single day through my work.

James Baldwin once said, “Not everything that is faced can be changed, but nothing can be changed until it’s faced.” My family has faced cancer again and again. And those experiences transformed me from storyteller to a stakeholder. Today, I serve as a patient and research advocate, working to ensure that people—especially those from diverse and underrepresented communities—have access to clinical trials, and that their lived experiences guide scientific study from beginning to end.

Advocacy isn’t just awareness; it’s action. It’s building systems where patient voices are treated as essential data in the pursuit of better science. I think, I got it right this time little brother!