My story begins when I lost my grandmother. I was 12 years old and all I knew was that she had some form of cancer. We spent some time together before she passed and I remember how frail she looked, and how unexpected it seemed.
Years later, my aunt was also diagnosed with cancer. She battled for several years, gaining remission in some areas, but would have recurrences in others. It seemed like every time she got rid of one cancer something else would come up. After a few years went by, my aunt passed away. I was in the middle of college at the time, and it seemed like right after we lost my aunt, my dad was also diagnosed with cancer.
We didn’t talk a lot about our health issues in my family. As a kid, I didn’t know much more than hearing someone was sick. When my dad was diagnosed, it was the first time we really spoke openly about illness in my family. He went through chemo and radiation and did everything he could to make sure that he got better.
Over the next two years, I watched my dad fight. Even though he did everything he could to eradicate the cancer, his doctors informed him that they found stage IV cancer somewhere else in his body. My father decided not to move forward with any additional treatments and we had about two months with him after that. He shared with us that what he had was something that we all could have as well. That’s when I got tested for Lynch syndrome along with two of my siblings.
My father passed. Three days after having his service I found out that I was positive for Lynch syndrome too. Since then, I have learned so much about what I can do to keep myself healthy. I have learned how to proactively screen so I can catch things early. Because of the conversation with my dad I am lucky to be in the minority of people who are diagnosed with this hereditary gene mutation prior to having cancer.
I still can’t help but wonder what life would have been like and who might still be here today if my family had known sooner. If we had spoken more openly or understood the impact testing and screening can have on your life. This journey has been full of ups and downs. It has its challenges and its benefits. But I am better for knowing.
The challenge is that I don’t know what will come, and I’ve also seen what could happen. To be honest, I never had a crystal ball before. The benefit, because of those who came before me, because of my dad encouraging me to be tested, is that I have every opportunity to succeed. He gave me the opportunity to do more than he could, and I can take advantage of it everyday. I can be proactive about my care, not reactive. I can push forward and do what I can to be safe and healthy.
Since my diagnosis with Lynch syndrome I’ve had more colonoscopies than many have had in their life, plus other screenings and tests. I also have danced in the operating room, sung out loud even if people didn’t want me to, brought treats for the staff, and thank you cards for those who are unsung heroes in this field.
I’ve shared my story and encouraged others to get tested. I have grown closer to my family, loving harder and being more open. I have fallen in love and gotten married. I get to care for others the way I hope I will be cared for if I need it, and I make every day count. I look forward to every opportunity to share my story. Knowing I have Lynch syndrome and understanding my risks empowers me to step into my life and live it well.