Editor’s note: We are sad to report that Emily Koski passed away of pancreatic cancer in November 2019. She was an inspiration to many, and we are extremely grateful for all she did to bring much-needed awareness and funds to this disease.
Emily Koski used to run a lot. Running seven marathons, including four Boston Marathons, working as an interior designer and raising five daughters, she was constantly on the go. Running her girls to school, running to a new client’s house, running to care for her elderly mother, running and running … until May 2017.
During that month, Koski’s sister, Katie Strickland, experienced pain in her abdomen. Forty-three days after she was diagnosed, Strickland died from pancreatic cancer.
“It was like an alien took over her body, and she disappeared,” lamented Koski.
In October 2017, Koski, at age 47, sought a genetic test for the disease, which showed a 6 percent lifetime risk of her developing pancreatic cancer. A month later, she began feeling unusual leg cramps.
The race to figure out what was going on with Koski’s health took her through a team of specialists – GI, vascular, sports medicine, neurology – in addition to her primary care doctor. Almost exactly a year after her sister’s diagnosis, a CA 19-9 tumor marker test in May 2018 provided a clue about the problem, and additional tests confirmed Koski had stage IV pancreatic cancer, which had spread to her liver and possibly her lungs.
Running to a Standstill
At first, pancreatic cancer stopped the marathoner and mother of five.
“After my sister Katie passed away, I thought that was what was going to happen to me,” recalled Koski. “But then, I just refused to let it happen. I have too much life left in me, too many people who rely on me.”
One day while Koski was recovering from chemotherapy treatments at home, she read an email a friend forwarded to her from the Pancreatic Cancer Action Network (PanCAN) about survivor Elise Tedeschi. Inspired by the survivor’s story, Koski joined the PanCAN email list, and her family began to comb through the pages of pancan.org for resources and information about the disease.
Then Koski received an email from PanCAN about November being Pancreatic Cancer Awareness Month. “My family and good friend, Laura Fletcher, agreed that PanCAN was the organization to support going into November. I just wasn’t sure how until the day a button popped up on my Facebook page to add my favorite charity.”
Hit the Ground Running
Close friends for over a decade, Fletcher ran with Koski in their local women’s running group. “Just like the pace of pancreatic cancer, we knew that whatever we were going to do for the cause needed to be fast, and that’s the speed of social media,” Fletcher said.
She immediately helped Koski set up a Facebook fundraising campaign to support the efforts of PanCAN.
Each day of November, Koski cried reading the Facebook comments. “People feel so helpless with this disease, which is why community is critical for those touched by it. So many are willing to share their story, their time and their money to turn the tide.”
Koski’s youngest daughter saw how much this campaign meant to her mom and told her she wanted to do something big for the cause too.
Together, they came up with “Pancakes for PanCAN,” a walk/run fundraiser that concluded with a pancake breakfast. The local DIY event held Koski at the center of it as a much-loved, vibrant member of the community, fighting a devastating disease most people knew little about.
“Being a relatively young, energetic woman in the neighborhood, it struck people when they saw me and learned how dire this disease is,” exclaimed Koski. “But that shock created awareness and that’s what we need to make some major progress against pancreatic cancer.”
The event certainly did spread awareness throughout the community as more than 300 people attended. And the Facebook campaign combined with the “Pancakes for PanCAN” event raised more than $40,000 for the cause.
“I have high hopes, and I like to make things happen,” asserted Koski. “Our homespun group came together in a natural way to make as big of an impact as we could locally.”
Going the local community route felt natural to Koski because it involved the people who are part of her everyday life, whether it’s someone she sees at the grocery store checkout or at one of her daughter’s athletic events. She put a familiar face on an unfamiliar disease for the folks in her hometown.
One of the benefits of people in your community being familiar with you and your condition is knowing what might appeal to you.
Just as the wife of Koski’s oncologist knew when she told Koski she would give back to the cause in a huge way, probably on the level of something like the ALS ice bucket challenge.
Koski grabbed that idea and ran with it.
Standing Up to the Challenge
“What I loved about the ice bucket challenge was that it simply started with one woman who had a loving intention, doing something at home,” admired Koski. “Then her single action gained momentum locally, exploded nationally and within six weeks raised $115 million for ALS.”
Koski and her committed team knew they wanted to make the same level of impact for PanCAN. “If we didn’t have the success of the Facebook campaign and pancakes event, we wouldn’t think it was possible to do something bigger and better,” noted Fletcher.
“We wanted to create a social media challenge campaign that would match PanCAN’s goal of raising $200 million by 2020. Plus, we aimed to spread awareness about the symptoms as well as empower people to be their own advocates and go to the doctor to get something checked out when it doesn’t feel right.”
With their goals clearly defined, the next step was figuring out what to actually do for the challenge.
Koski remembered, “During the speech I gave at the pancakes event, I said it was ‘time to flip the script’ on pancreatic cancer. I wanted to reverse the direction of the disease and knew we needed to show some action!
“Eventually, we came up with ‘Handstands for PanCAN!’ It’s catchy too,” laughed Koski.
She hadn’t practiced yoga regularly or taken gymnastics before. For her, as a pancreatic cancer survivor, doing a handstand is simply about trying.
“With this disease, you have to try to live. I don’t want anyone to hurt themselves, but to just try to do what they can, whether using spotters or sitting in a chair. Just be bold in your own way.”
Koski practices what she preaches, as you can see in the video. Filmed by her husband, her close friend, Fletcher, spots Koski, who is still receiving chemo, as she makes four attempts to do a handstand before she nails it.
“It’s about the intention and the attempt,” encouraged Fletcher. “The attitude is to not let pancreatic cancer keep you down, but to stand up to it!”
Join the “Handstands for PanCAN” challenge with these three simple steps:
- RECORD: a video or take a picture performing a handstand (however you can)
- UPLOAD: the video or photo to your social media pages with #handstandsforpancan and challenge three friends to do the same within 24 hours
- GIVE: make a donation to support the work of PanCAN for patients and their families
Koski and Fletcher want to reassure people that falling from the handstand is not failing. Whether you get your family involved in the challenge or the athletic teams of your children, it fundamentally comes down to people feeling good that they tried and supported this urgent cause.
What surprised Fletcher throughout their community fundraising was how many people knew someone who had pancreatic cancer, but they still didn’t know much about the disease.
“So many pancreatic cancer stories feel like a slap in the face, which has driven me more to give this disease the attention it deserves,” Fletcher said. “Helping Emily through her journey and getting educated by PanCAN gives me hope that this challenge will inform and inspire people.”
Koski added, “I don’t put the cancer ahead of the person. I live my life based on my faith, which works together with the science. Otherwise, how can you believe in something you don’t know about?
“Why can’t we imagine a cure? Why can’t we make that real? I believe that we have enough caring, intelligent people in the world to make this vision happen.”
Knowledge is the key for the patient, the doctor, the researcher and the greater community to crack the code of pancreatic cancer. Social campaigns such as #handstandsforpancan can wake people up to learn about the disease and invest in fighting it.