How I Tee’d off Colon Cancer Awareness Month with PGA Pros in Memory of My Mom at the Cologuard Classic
Guest Blog by Malvina Kefalas, colorectal cancer caregiver and Local Event Director for Get Your Rear in Gear – New York City
Malvina originally shared this recounting of the Cologuard Classic on LinkedIn.
The 2023 Cologuard Classic in Tucson, sponsored by Exact Sciences was one of the most memorable, impactful experiences of my life – I couldn’t be more grateful to the Colon Cancer Coalition for sending me as an honorary observer!
I lost my mom, Tita Kefalas, just 3 months after her stage IV colon cancer diagnosis in July of 2021 and it shook my world. Having been a member of the colon cancer community since just a few weeks after her passing in October 2021, I’ve had the pleasure of connecting with survivors, patients, and fellow caregivers over SO many important initiatives. But this was different – the Cologuard Classic is unique in that is both a recharging retreat under the beautiful Arizona sunshine with this community’s advocacy leaders, and a refreshing opportunity to connect with a broader community, too.
The weekend’s festivities kicked off with a spectacular event, Night of Champions, where many of us who have been working on the same events, like Get Your Rear in Gear across cities nationwide, and Call on Congress, finally got the chance to meet in person – and meet the queen of our community, Katie Couric.
Our Get Your Rear in Gear – NY crew was out in force, with Vanessa Ghigliotty and Richard Fahrer from our committee spreading their signature, sparkling survivors’ stories. But I was also honored and humbled to meet advocates like Allison Rosen, Carole Motyka-Mancini, and JJ Singleton, who are undoubtedly leaders in our community. It felt like a reunion, knowing we’ve all been connected through enough of the same battles to span a whole lifetime.
I’ve often said to close friends and family that once you enter the world of cancer, you never truly leave it. The indignant pain, inequitable suffering, and brutal reality that we’re still too far away from prevention alone gets burned into our psyches. That we witness what we do in depressing doctor’s office lighting, sitting by the bedside of our loved ones – or in them – we’d take the pain away from in an instant, earning the armchair medical degrees as caregivers, patients, survivors – there are truly no words adequate to describe. You don’t know until you know, and then you pray and hope and organize and advocate so no one else ever has to.
To see those who have been united by these dark, isolating experiences now united in shining daylight, breathing clear mountain air, and making sense out of the pain by doing good feels poetic and angelic. The passion, humor, and unerring commitment of this community sometimes knocks the wind out of me.
A highlight was connecting with another young woman who, like me, lost her mom to colon cancer too young, and moms who were there as survivors. She lost her mom at age 25 – I, too, was just 29 when I lost mine. And many of these survivors have daughters much, much younger than us. Each of us identified the other side of the pain as worse than our own. My heart hurts for my mom more than I feel my own pain sometimes because I know she didn’t want to leave me. But one of the moms told me something that offered me immense healing –“seeing you thrive helps me to know my daughters would be okay.”
As soon as we’d all settled in for the evening, we were back on the course bright and early for a 4:30 AM wakeup call to bring a sea of blue to The Today Show’s spotlight on the Classic, helmed by Dylan Dreyer. We watched the sunrise over the mountains and then had front row seats to see Champions tee off on Day 1 of this tournament with Exact Chairman & CEO Kevin Conroy.
As we shed the gloves, handwarmers, and layers hour by hour with snow melting and sun coming out, we walked the course, connected at Survivor’s Central, and then gathered for dinners with our fellow advocates. It’s hard to describe what it meant to me to be surrounded by people decades younger than my mom who had been through the same disease, the same chemo, the same earth-shattering news – just eating a meal together – when all of us know that simply getting one single Ensure down is a victory during the worst days of treatment.
But the highlight of all highlights for me was Day 2 of the tournament, where I had the immense, once in a lifetime privilege to walk the entire 18-hole course inches away from some of the world’s best golf pros, like Y.E. Yang, Willie Wood, and arguably the colon cancer advocacy king Jerry Kelly, who stopped mid-game to hand me one of his golf balls. I even got to ride on the back of a golf cart with the pros!
Alongside me stood Dave Rhode who had scheduled his latest round of chemo as a stage IV patient around this weekend. On the sidelines our fellow advocates cheered for us and stood by our side as we walked the course. Not to drive (pun absolutely intended) the metaphor too far, but golf feels a lot like cancer treatment. You know the long course ahead at start – and you trust in the experts to get it right – but even the most advanced, insightful medical minds, like the most awarded golf pros – sometimes can’t win. Precision, accuracy, and force all play a role.
As a marketer, I have to shout-out the incredible patient advocacy team at Exact Sciences, including Bryan Goettel who is a hero to the CRC community, Tara Sorg, Courtney Saxler, Mary Doroshenk, and Linsday Houff. One of the things that’s the hardest to measure in marketing is the quality of the impressions and interactions we get. So aligning this event to the PGA TOUR Champions – a professional senior golf tour – nothing short of genius. According to the Centers for Disease Control and Prevention only 71.6% of adults aged 50 to 75 are up to date with colorectal cancer screening based on all test types – so increasing awareness of Cologuard in this audience is key to make an impact on adherence in one of the most at-risk populations.
A favorite quote since losing my mom has been “The strange and painful truth is that I’m a better person because I lost my mom young. When you say you experience my writing as sacred what you are touching is the divine place within me that is my mother. Sugar is the temple I built in my obliterated place. I’d give it all back in a snap, but the fact is, my grief taught me things. It showed me shades and hues I couldn’t have otherwise seen. It required me to suffer. It compelled me to reach.”
When people say they are proud of the work I do for colon cancer awareness – this is how I feel. This is how I have healed, this is what I have built in my obliterated place. But like Cheryl Strayed, the author whose words I hold so near and dear, my grief, this community have taught me things and compelled me to reach in ways I could never have fathomed before I knew the world of loss to cancer.
That being said, I probably should have felt just a smidge less comfortable asking all the thousands of strangers on site about their bowel habits and whether they’ve been scoped in the last 5 years. But then again, breaking down the stigma, cracking (again, pun very much intended) some butt jokes, can be the difference between getting someone screened, or taking this so seriously people stay silent.
As the weekend came to a close, I watched hundreds of my new friends walk the 18th hole decked out in blue to close the tournament and crown a winner from my seat on the plane to get back to work at CancerIQ alongside my colleagues who have also lost loved ones to this disease. Like I said, once you’ve entered the world of cancer, you never truly leave it. I’m lucky to live in the part of its world where I get to be surrounded by passionate people in both my personal and professional life who are going to end cancer as we know it.
Endless gratitude to my Co-Local Event Director Alyssa Frost for bringing me on alongside her to work with CCC and co-advocates – now family – including Jackie Evans, Erin Peterson, Chris Evans, Stacy Zwerdling, Maggie K. Sotos and everyone else on the team.
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This is so beautifully written.
Bought me tears of sadness, tears of joy, tears of love, tears of kindness, and tears of hope!
I’m a newbie to this site! I was just diagnosed with colon cancer and had my surgery 2 weeks ago at the Brigham and Womens in Boston …. Looks like stage 3 ( spread to 2 lympth nodes) I’m freakin out … probably starting chemotherapy soon at Dana Farber.
In need of all the support I can get. Reading all these wonderful stories is giving me hope!