April 27 Purple Stride event to raise awareness for pancreatic cancer research
By Terrance Thornton | Digital Free Press
A diagnosis of cancer is a life-changing experience millions of Americans endure year after year — but when the oftentimes fatal disease afflicts a young person the diagnosis can be particularly devastating.
And when a rare form of cancer emerges at the pancreas — Solid Pseudopapillary Neoplasm (SPN) of the Pancreas to be exact — all hope can be lost.
“In 2017, I moved from Minnesota to Arizona to study electrical engineering at Arizona State University. I held executive positions in my sorority, competed in ballroom dancing, and was enjoying life as a young adult,” Demi Salls told the Digital Free Press.
“I started having odd symptoms in 2020. I was lethargic, my hormones were reading as off-the-charts high, and combinations of medications never seemed to get to the root of the issue. I had quite a few doctors pass off my symptoms as PCOS, some even commenting that some of my symptoms didn’t mean much and that I should just take the medications they prescribed.”
Ms. Salls is a fighter and explains through the persistence of her parents and her own due diligence she was able to get to the bottom of what was ailing the otherwise healthy young college student four years ago.
“After over a year of working with different doctors, from endocrinologists to OBGYNs to general practitioners, and not one having a single cause for all of my symptoms, my mom finally encouraged me to get a CT scan in December of 2021 while I was visiting home for Christmas, to diagnose whether my issue stemmed from my ovaries (PCOS) or my adrenal glands (NCAH). Instead, we found something no one was expecting,” she said.
What they found was a tumor, Ms. Salls explains.
“My tumor was rare enough that I had trained medical professionals mispronounce the diagnosis when giving it to me,” she said. “Of course, as any good college student does, I first turned to Google and terrified myself. At the time, pancreatic cancer’s five-year survival rate was less than 10%, and I mourned the idea that I’d die before I saw 30.”
About 30 days later, Ms. Salls was undergoing surgery at the Mayo Clinic to have the cancerous tumor removed from her pancreas.
“We scheduled the surgery for Jan. 19, 2022, which is just shy of one month after I learned about the tumor and two weeks before my 22nd birthday,” she said.
“My mom took me in and suddenly I was in the care of the nurses, doctors, residents, and tech teams of Mayo Clinic Hospital’s St. Mary’s campus. The care team at Mayo was beyond anything I could have imagined. Throughout surgery prep and for the 9-day hospital stay afterward, they were (and still are) some of the kindest humans I’ve ever had the pleasure of meeting.”
Ms. Salls describes the experience of diagnosis to surgery with critical details of the cutting-edge procedure.
“I worked with Dr. Michael L. Kendrick, a pioneer in laparoscopic surgeries dealing with pancreatic, liver, bile duct, and gallbladder diseases and tumors,” she said. We determined that the best care method would be a pancreaticoduodenectomy, but since that’s far too big of a word for daily usage, the common term for it is the ‘Whipple’ procedure.”
The Whipple procedure is a an intense five-hour surgery where in Ms. Salls’ case the task was removing a lemon-sized tumor, about one-third of her pancreas, 8 inches of her small intestine, and gallbladder would all be removed.
“A 2-inch incision right below my belly button and multiple incisions around my abdominal area for cameras/probes would allow for Dr. Kendrick to be quickly in and out,” she said.
Ms. Salls points out her parents played a vital role in her initial diagnosis, surgery and recovery, the effects of which are still reverberating today.
“Without my parents, I wouldn’t have gotten a diagnosis nor would I be having the quality of life that I do today,” she explained. “My mom was always the champion, coming to every health appointment with me, fighting doctors on my behalf, and pushing for new treatments when I was exhausted from advocating for myself.”
The old adage, ‘it takes a village’ is a theme in Ms. Salls’ story as she points out the critical care delivered by loved ones and Mayo Clinic staff.
“They kept me sane in that hospital, especially since I could only have one guest (my mom), and visiting hours were limited,” she said.
Following her successful surgery, Ms. Salls explains everything is different now.
“After leaving the hospital, my life changed,” she said.
“My pancreas, now extremely sensitive, has been prone to bouts of pancreatitis — leaving me in hospitals for both Halloween of 2022 and Thanksgiving of 2023 — hopefully 2024 is the first year in four years I haven’t had a holiday interrupted. My diet and lifestyle had to be entirely reworked and I’m still trying to find the balance between maintaining my health and being able to have a young working woman’s lifestyle, but every day there’s an improvement.”
Purple Stride: The Pancreatic Cancer Action Network
The fight carries on.
Here in the Valley of the Sun is one of 60 bureaus of the Pancreatic Cancer Action Network, which is the nation’s most recognized 501(c)(3) nonprofit organization raising money for research and awareness and awareness to fight pancreatic cancer.
According to journalist and PanCan volunteer Heather Moore Lerman, over the past six years the 5-year survival rate for pancreatic cancer victims has jumped from 6 to 13% due in part to research dollars raised by events such as Purple Stride across the country.
“Purple Stride Phoenix is an important cause here in the Valley of the Sun because approximately 1,100 Arizonans will be diagnosed with pancreatic cancer this year, and PanCan provides the types of support these patients will need,” she said.
“Demi’s story is a perfect example that shatters the stereotype that this insidious disease does not affect young people. Pancreatic cancer does not discriminate and everyone should learn the signs and symptoms to look for and strongly advocate for their health like Demi and her family.”
Purple Stride: The Walk to End Pancreatic Cancer is 7:30 a.m. Saturday, April 27, at Salt River Fields, 7555 N. Pima Road. Gates open at 6:30 a.m. while the ceremony starts at 7:30 a.m. and the walk/run gets going at 8 a.m. The event runs until 10 a.m.
“I also have to say how grateful I am to the Pancreatic Cancer Action Network for helping to connect me with a community of other survivors,” Ms. Salls said of the volunteer, nonprofit effort. “Hospital stays, doctor’s visits and the constant fight for your own body can end up feeling lonely, but finding others who have shared similar struggles and stories helps me to realize that fighting pancreatic cancer is a group effort, and I haven’t felt lonely since discovering them.”
