During yesterday’s spring snow in PA, I had some time for quiet reflection, and my thoughts turned to my grandmother.
Isn’t she beautiful?
She died when she was just 33 years old of ovarian cancer, so I never knew her. On days like yesterday, times when the entire world seems to pause, I think of her and wonder. Did she like snowfalls? How did she take her tea? What was her favorite book?
Cancer stole that conversation from me, from my grandmother, from my entire family. We have a genetic disorder — Lynch Syndrome — that makes our family super susceptible to growing cancer in our bodies (I’m also holding out hope that it gives us mad-crazy super powers — I’ll keep you all posted on that one). To date, my grandmother is not the only person in my immediate family to feel the negative genetic mojo we have going on: my mom has had cancer twice (that’s us below at her birthday tea this year — I feel so blessed to be able to celebrate birthdays with her), my uncle is currently battling his second go-round, and my brother had his own battle with cancer just a few years back.
Genetic testing for Lynch Syndrome is now the key to good health for my family. We know that all my siblings and I are Lynch positive (it is genetically dominant — so I had a 50/50 chance, and so do my kids). This info allows for us to make important health decisions, like yearly screenings for Lynch prevalent cancers and the ability to take part in preventative surgeries, like the oophorectomy and hysterectomy my sister and I had a few years ago.
However, knowing isn’t always awesome. Sometimes your brain goes to a place of fear, and suddenly everything could possibly be a symptom of the big what-seems-inevitable diagnosis. Living with that is a huge mental challenge. Because when a doctor says “it could be nothing, but…” we think about all the times our family history has landed us after the comma instead of before. And that is the silent terror in Lynch. The thing that isn’t so often talked about. The fear that sometimes takes hold… That something might be already there, in you, your mom, your sibling, your child. And maybe it’ll be found in time, but maybe not.
One thing is certain — knowing about our genes gives us the ability to be as preventative as possible.
If my family history sounds like yours, or someone’s you know, I urge you to learn more.
And if you’d like to watch more about my family’s genetic journey, please watch!