Turning grief into hope and action

“It’s just such a unique group of wonderful people,” volunteer Maggie Rathert said.

Since being formed in 2011, the task force has raised more than $1 million for pancreatic cancer research at UW Carbone. Their signature fundraiser, Roll & Stroll for Pancreas Cancer, is a popular summer tradition. This year’s event is set for August 14 at Capital Brewery in Middleton.

Their efforts focus on improving the treatment and survival rates for one of the deadliest types of cancers. Pancreatic cancer is rarely caught in its earliest, more treatable stages because it does not cause noticeable symptoms. Because most patients are diagnosed after the cancer is metastatic (spread to other areas of the body), existing treatments are not effective long-term. Even for those with an early diagnosis and treatment, it is still highly likely their cancer will return.

Still, there has been progress made in the last decade. Gerianne Holzman joined the task force during its formation in 2011. Her sister, Carole Vick, had recently passed away from pancreatic cancer.

At that time, patients expected to live six months to a year from their diagnosis. Vick’s goal was to make it at least four months to see her second grandchild be born, and she lived a few months beyond that.

Now, Holzman said, new treatment options mean patients like her sister could survive up to a year or 18 months. Having any amount of additional time with loved ones is a blessing.

“Even an extra six months, that can make a difference,” Holzman said. “It does not seem like very long, but if there’s one thing you want to accomplish in that six months, you can get it done.”

Holzman, who is actively involved in organizing Roll & Stroll each year, has enjoyed seeing the task force efforts expand in the past 11 years, especially with their fundraising totals.

That money is an integral part of UW Carbone’s research efforts, especially for providing seed funding to generate initial research data that may aid in applying for significant federal grants.

Holzman praised the dedication and skills of the task force’s volunteers, who are a mix of cancer survivors and loved ones of those who lost their fight.

“We come from so many backgrounds and have different talents, and we have been able to tap into those talents to get where we are today,” Holzman said.

Rathert is a survivor of ampullary cancer, a rare disease affecting the opening where the pancreas duct and bile duct join to the small intestine. While not classified as a type of pancreatic cancer, the treatment methods are very similar.

She and her husband joined the task force in 2014. As high school teachers, Rathert and her husband were eager to engage in youth outreach, which led to educational presentations at local schools as well as inviting students to tour UW’s labs and meet researchers.

Students also volunteer to help with Roll & Stroll and assembling Comfort Totes. Those totes, given to newly diagnosed pancreatic cancer patients, include items such as unscented lotion, insulated mugs and puzzle books to help patients and loved ones during treatment. Rathert said she received a similar care package from her family during treatment, and her oncologist, Dr. Noelle LoConte, suggested the task force start a similar effort.

“We’ve heard a lot of great feedback,” said Rathert, adding each tote comes with a note of encouragement from the task force.

Rathert also is excited about the task force’s plans to create a peer-mentoring network, connecting volunteers to patients and caregivers to offer additional support and empathy from people who have shared experience.

Rathert, who has also lost friends to pancreatic and bile duct cancers, said being involved in the task force has given her a sense of peace and hope that she is helping with efforts to improve outcomes for those patients and their loved ones.

“Nothing takes away that grief and that loss, but on the other hand, we’re doing what we can,” she said.