Story by Amy Harrell. Photos by Jack Helms.
In 2009, Suzan Mayberry and her husband Steve were in Baltimore, getting acquainted with a radiologist at Johns Hopkins after Steve’s sudden onset of colon cancer. “Our learning curves were huge,” she says. Despite the care he received at Johns Hopkins, Steve passed away from colon cancer in March of 2010. This left Suzan, at the age of 46, suddenly a widow with 19- and 21-year old sons.
Shortly after his passing, they learned that he had the Lynch gene, a DNA mutation which creates vulnerabilities to certain types of cancer. “It wasn’t until after we buried him and I got myself moved back down to Texas and settled, that we got his slides from the hospital, and then I took my two sons, a nephew and an aunt with me and had them tested,” Suzan explains. Her eldest son, Travis, was diagnosed with Lynch syndrome, and Steve’s brother Greg has since died of colon cancer.
In the United States, 1 in 279 people have Lynch syndrome, and 95% of those people do not know it. Being positive for Lynch syndrome increases your chances of getting cancer to 80% at or below 50 years of age.
Travis is now considered a cancer “previvor.” You read that term right – a pre-survivor of cancer. You’re a previvor once you have been diagnosed, or had a genetic test that says that you have Lynch syndrome. What’s next after that, and how do you prevent the cancer? The next thing is to be really diligent and militant about your preventative maintenance. Beyond routine healthcare like an annual physical or eye exam, previvors add regular pap smears, skin checks, and colonoscopies to their list.
Speaking of her late husband, Suzan says, “He would have taken care of himself, similarly to how Travis is now taking care of himself. Travis lets me know when his colonoscopy is done. He knows I want to know that he had it, but it’s never part of my problem for him to get it. He owns it, and takes care of himself. And that’s the kind of man that my husband was.” If only Steve had the information he needed to take action, maybe the outcome could have been different.
And that is what Mayberry Memorial has set out to address. Suzan’s passion for raising awareness is the driving force behind the organization. For her, knowing about her son’s positive test created a burning need to find out where else it was, which led to her family members getting tested. “If you have more than two people in your family on the same side who died young of cancer, you should discuss genetic testing with your doctor,” Suzan implores. “It’s like the knowledge comforts me, and I’m not afraid to dig for it, or seek it out. But the people that don’t do that … I mean this is hereditary cancer. The first vision I have is like an axe over your head, your chances of having cancer at 80%. It feels like a death sentence at first, but knowing is better than not knowing it. The best treatment that we have is prevention.”
Suzan’s career in community investments at the Federal Home Loan Bank ignited an interest in nonprofit work. Mayberry Memorial was created in 2011, and they started out raising funds through barbecue cook-offs because it was something Steve enjoyed when he was alive,” says Suzan. “When he knew he was going to die, he said more than one time that in the last five years, ‘that was the most fun that I’ve ever had.’ And so we decided to celebrate and honor that by making our roots in the barbecue community.”
Suzan and the board of directors for Mayberry Memorial are interested in being a ‘landing page’ of sorts where GI physicians and oncologists in North Texas can send their patients for support and information about Lynch syndrome. “Now, we feel like we’ve met that community, and we’ve made the difference that we can make and we need to reach a larger audience,” she says. Suzan is just the type of woman who will keep working until there is no work left. If she never received a speck of recognition, it wouldn’t phase her. Their goal is to raise funding for more research and awareness for hereditary cancers like Lynch syndrome, and they have raised over $60,000 so far, simply through barbecue cook-offs. But they have bigger dreams. There is an immediate need for genetic testing and routine screenings like colonoscopies to be covered by insurance, much like mammograms and pap smears. Right now, North Texans must pay out of pocket if they have a diagnosis like Lynch syndrome.
Under the leadership of her son Travis, the Mayberry Memorial board took 2019 to reassess where they wanted to go. Now, with new energy on the board of directors, they have set an audacious goal: to save lives in North Texas. With a newly developed medical advisory council, they are hard at work creating new content for physicians and patients to access. “We are focusing more on our outreach and on social media,” Suzan explains. “And then we’re working on creating information that can be given to patients in the clinical setting. I’m really excited about the new direction and the new energy that we have. I’m excited that we’re not afraid to talk about colon cancer and real issues. We’re trying to take it out of medical speak and put it into common terms that are easier to digest, and show how families are dealing with Lynch syndrome.”
The best way to get involved with Mayberry Memorial is to follow them on Facebook and become an advocate by visiting their website. Suzan is excited about what’s in store for the remainder of 2020, and her energy is contagious. “This year for North Texas Giving Day, we are hosting a virtual cooking fundraiser with my son, Chef Kyle Mayberry. He’s going to show us how to make a fresh pasta dish perfect for summer and using vegetables grown in the garden. It’s just $30 to get an early bird ticket, and we’ll email you a list of ingredients and things you’ll need to make the recipe!” Suzan gets just as animated when she talks about spreading awareness of Lynch syndrome as she does her sons. You don’t have to be around her long to feel the enthusiasm she has for both. With so much uncertainty in the world, Suzan’s boundless energy for Mayberry Memorial is a shining light.