Today marks what would have been my brother Jimmy’s 65th birthday. It’s a bittersweet moment filled with both celebration and reflection as I remember the incredible person he was and the battle he faced against colorectal cancer caused by Lynch syndrome. In sharing this story, I hope to raise awareness about Lynch syndrome, honor Jimmy’s memory and shed light on the challenges of survivor guilt that often accompany the loss of a loved one due to Lynch syndrome.
Lynch syndrome, a hereditary genetic condition, significantly increases the risk of developing various cancers, including colorectal cancer. Unfortunately, Lynch syndrome is often deemed as a silent threat because individuals carrying the gene mutation may be unaware of their increased risk until a cancer diagnosis occurs. Lynch syndrome is not deemed rare; it is underdiagnosed.
Jimmy was diagnosed with late-stage colorectal cancer in 1994, and the doctors told him that his chances of survival were slim. He never knew he had Lynch syndrome at the time, and genetic counseling or genetic testing was not as prevalent back then as it is now. Our strong family medical history of cancer was not something we spent a lot of time discussing. We were stunned as a family at his development of early-onset colorectal cancer — his prognosis was a massive shock to all of us.
When he was diagnosed, Jimmy and his wife were expecting their first child. Aside from the prognosis, he was determined to fight and underwent multiple surgeries, chemotherapy and other treatments. He was angry that his life was being cut short, mainly because he knew his child would grow up fatherless.
After his daughter was born, he continued to undergo chemotherapy and Jimmy stayed home to be with his baby girl as much as possible. While battling debilitating nausea and lethargy from the chemo, Jimmy made a concerted effort to father her as much as he possibly could because he knew his days were numbered.
I recall him telling me he was making videos of himself reading books to her, offering her fatherly advice for different chapters in her life, and writing out 18 birthday cards for his precious daughter, knowing he would not be around to fête her for each one. The mental fortitude he required to accomplish these overwhelming and thoughtful tasks was immeasurable. I cannot fathom what crossed his mind during that time, but I know it was heart-wrenching for him, knowing he was dying and that he was not going to be around to protect and champion his daughter.
When I was visiting Jimmy a few days before he died, he asked me to grant him one last wish — he wanted a beer and a cigarette. I didn’t hesitate to give him his final wish — he was dying. I thought: “Why deprive him of anything at this point?”
I honored his wish, opening the beer and putting the cigarette in his mouth. He took a few puffs off the cigarette and took a large gulp of beer. He sighed, and then the most beautiful smile emerged onto his face. “Thanks, that tastes so good,” he said.
I cried.
I was so happy to give him a little joy and witness his wonderful smile one last time.
He died on Monday morning, September 11th, 1995, when his baby was eight months old.
As I think of Jimmy’s 65th birthday, it’s impossible to ignore the constant survivor guilt accompanying his absence. While we had typical sibling challenges, he was a protective older brother and friend. Survivor guilt is a complex emotion that often plagues those who have lost loved ones to illness.
I question myself with overwhelming questions often: “Why have I not developed cancer? Why have I outlived him? Why did he have to die?” And “What could we as a family have done differently?” I cannot help but consider how radically different my life would be had he survived. I learned that acknowledging and addressing these emotions is crucial, and I had to seek emotional support. His death has become a metric for how I have lived my life and raised my son.
In Jimmy’s memory, I have spent the past decade advocating for increased awareness of Lynch syndrome. Certified genetic counseling, genetic testing, regular screenings and early detection can significantly affect outcomes for those with Lynch syndrome. By sharing my family’s experience, I hope to encourage others to be proactive about their health and to seek out genetic counseling if they have a strong family history of cancer and consider genetic testing if they have a strong family medical history of cancer, mainly if those cancers emerged before age 50.
Today, on what would have been Jimmy’s 65th birthday, I choose to celebrate his life rather than dwell on the pain of his loss. I remember the joy he brought to my life, his infectious laughter, and the love he shared with everyone around him. By sharing my story, I hope to contribute to the broader conversation about genetic conditions, cancer awareness, and the importance of supporting one another through life’s most challenging moments. In celebrating Jimmy’s life, I have turned my grief into action and strive to make a positive impact in the fight against Lynch syndrome and its devastating consequences — his death has not been in vain.
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