Bringing a Victory Flag to Pancreatic Cancer

Tara Shanes-Knebel

Tara never imagined she would so unexpectedly lose her mom, Gigi—her best friend and role model—just a month before her 25^th birthday. Now, 16 years since Gigi’s passing, Tara continues to mourn for all the milestones they could have experienced together, including Tara’s wedding to her husband Andy, if it weren’t for pancreatic cancer.

Gigi started experiencing stomach aches and weight loss in mid-May 2008. At the time, she was just 51, otherwise healthy, and had no family history of pancreatic cancer. She had just started her dream job after spending most of her career as a vocational rehabilitation counselor, advocating for employees with mental health challenges and providing guidance to the workplaces employing them.

During Memorial Day weekend in 2008, Tara’s dad, Steve, took Gigi to urgent care because her stomach pain was severe and her skin was turning yellow due to jaundice. After performing multiple tests, the urgent care doctor, detached and blunt, delivered life-altering news: Gigi was dying of either liver cancer or pancreatic cancer. Following Memorial Day weekend, Gigi saw a gastroenterologist who was very helpful and compassionate. When her scan results confirmed metastatic pancreatic cancer, he provided visuals of where the pancreas is located and drew visuals to describe her diagnosis. He also explained how the tumor was impacting Gigi’s bile duct and why it was causing jaundice, difficulty processing food, and stomach pain. To add further devastation to this diagnosis, Gigi’s tumor was intertwined with a major artery, making her ineligible for a Whipple procedure, which would provide the best chance for long-term survival.

“I reacted to my mom’s diagnosis by jumping into action and being ‘the doer.’ I reached out to multiple hospitals in New York City and in Westchester County, where we lived, and scheduled appointments with the most qualified oncologists who had extensive experience treating pancreatic cancer patients. I kept a detailed spreadsheet with all my mom’s appointments, surgeries, medications, pancreatic enzymes, and side effects,” Tara remembers. “My dad and I made a great team taking care of my mom, giving her insulin shots when the cancer brought on diabetes, cooking for her, and keeping her in an optimistic mindset.” Tara even organized a backyard “chemo party,” complete with music and a potluck dinner, so friends and family could surround Gigi with love and positivity before she started chemotherapy.

At first, Gigi responded well to chemotherapy, and her CA 19-9, a pancreatic cancer tumor marker in the blood, decreased. However, a dispute with her insurance company resulted in her treatment no longer being covered, and she unfortunately didn’t qualify for a clinical trial. Through sheer perseverance and some luck, Gigi found a radiation oncologist who selflessly donated $70,000-worth of radiation treatments to her. “For the first 10 months, you couldn’t tell my mom had cancer. She was even well enough to take an anniversary trip with my dad in January, seven months after being diagnosed,” Tara remembers. However, despite Gigi’s initial improvements, by March 2009 her health started to rapidly decline, and she passed away on April 9, 2009, surrounded by her loving family and leaving behind a legacy of helping and advocating for others.

Shortly before her passing, Gigi told Tara she wanted to bring a victory flag to pancreatic cancer. Since that pivotal moment, Tara has been doing everything she can to make that goal a reality in her mom’s honor. In 2010, Tara reached out to the Lustgarten Foundation and asked how she could become involved. With the help of her dad, a neighbor, and some friends and colleagues, Tara organized a community event—a walk named in Gigi’s honor—in Rye Town Park, near their family’s home in Westchester County. The inaugural event raised $129,000 for the Lustgarten Foundation and welcomed 100 attendees, despite the pouring rain.

Over time, the walk grew and more people became involved with planning, including friends Tara met through a local bereavement group for young adults. Tara was laser-focused on making the event worthy of her mom and found a sign company to donate banners, secured an event emcee from a local television news station along with support from a DJ and a local radio station, and posted about the event on her social media channels. “The ball just kept rolling, the walk kept growing, and I continue to strive to make the event bigger and better every year,” Tara shared. In fact, the event expanded so much that it became the official Lustgarten Foundation Westchester Walk for Pancreatic Cancer Research and moved to Rye Playland Park because it outgrew its original space.

Now in its 16^th year, the Westchester Walk has raised $4.5 million to date for Lustgarten’s research program—a remarkable accomplishment Tara knows Gigi would be incredibly proud of. Tara is so grateful to her family, friends, and colleagues who look forward to donating to the Westchester Walk every year to both honor Gigi and support research that is advancing early detection and new treatments. “My goal is to keep Gigi in my heart and in others’ hearts and support other patients the same way she devoted her life to standing up for others who needed it most,” Tara shared. “I believe that people so personally affected by this disease, like me, have a responsibility to raise awareness, fight for our family members, and ensure researchers who need funding are receiving it.”

Tara’s goal for the Westchester Walk is to provide a warm, welcoming space for people impacted by pancreatic cancer to gather together, acknowledge their grief, and find their hope. “My favorite part of the Walk is how empowered and inspired it makes me feel, and how overwhelmed I am by a sea of purple! I spend time with teams who have been attending annually since the first year, and it’s so gratifying that every year there are more survivors walking with their loved ones, sharing their courageous stories at the podium, and joining the ribbon-cutting ceremony. I love how the teams work together to keep their family members’ memories alive and celebrate their loved ones who are currently facing and surviving this horrible disease.”

In fact, raising awareness of pancreatic cancer is something that even extends into Tara’s professional life as a special education teacher. Her students know that purple is her favorite color, from her clothes, to her engagement ring, to the matching purple wedding bands she and her husband wear. Photos of Gigi and a “Be Positive” sign that Tara brought to all of Gigi’s doctor’s appointments and treatment sessions adorn her classroom wall—a tribute to the strength, grace, and positivity Gigi demonstrated during her pancreatic cancer diagnosis and a reminder that the fight against this disease must move forward.

“If my mom couldn’t be helped, then I need to do something for others, like she would have wanted. When she was diagnosed, the five-year survival rate was just 5% and she was told to put her affairs in order,” Tara recalls. “Thanks to the relentless efforts of organizations like the Lustgarten Foundation, the five-year survival rate is now in the double digits, at 13%. While this improvement is encouraging, we still have a long way to go, and I am committed to doing whatever I can to improve these statistics.”