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Don Simons
Written By: Julia Brabant, April 20267-Year Pancreatic Cancer Survivor Don Simons Speaks On Survival, Guilt & the Signs Too Many Miss
When Don Simons developed new-onset Type 2 diabetes at the age of 60 despite having no family history or obvious risk factors, it set the wheels in motion for a diagnosis few people see coming – and even fewer catch early enough. Rapid weight loss, ongoing digestive issues and rising blood pressure followed, and when jaundice developed, too, Don’s decision to seek a second opinion may well have saved his life.
It wasn’t just me who went through it. My wife, being the caregiver, went through the same emotions as me.
Don’s doctor at the time had essentially dismissed his symptoms, prompting Don to find a new one who identified the root of his issues right away. Additional tests and scans revealed a tumor that had wrapped around a bile duct and major artery, which caused Don’s jaundice and contributed to his high blood pressure.
“In another couple of weeks, I might have become ineligible to get the Whipple,” Don said, referencing a major surgery often used to treat pancreatic cancer.
Seeing the urgency in Don’s situation, doctors wanted to insert a stent to relieve jaundice. Yet, Don, a resident of northwest Arkansas, found that there wasn’t anyone in his area who could perform the procedure. A five-hour ambulance ride to St. Louis, Missouri, soon followed. Upon arrival, a doctor in St. Louis installed the stent within minutes.
With his condition stabilized, Don soon began chemotherapy. He had 24 sessions using FOLFIRINOX, a powerful combination of cancer drugs, before taking a break to let his body recover before starting again. In total, he had 36 rounds of chemotherapy until his doctors felt his condition had become operable.
I got really lucky. The surgeon that did the work was the doctor that trained other doctors on how to do it.
Don underwent a Whipple procedure at the University of Arkansas Medical Center on April 1, 2020 – during the height of the COVID-19 pandemic. His wife drove him to the hospital, but COVID-related restrictions prevented her from going inside.
“If anything happened, she couldn’t have gotten in,” Don said. “Instead of saying ‘goodbye,’ we said, ‘See you later,’ hugged and that was it.”
While walking into such a serious operation alone was nerve-wracking, Don felt confident in his surgical team, which included Dr. J. Camilo Barreto, M.D., one of the most experienced Whipple surgeons in the region. Dr. Barreto had performed almost 90 Whipple surgeries already, giving Don a high degree of confidence in his abilities.
“I got really lucky,” Don said. “The surgeon that did the work was the doctor that trained other doctors on how to do it.”
In addition to a highly skilled Whipple surgeon, an open-heart surgeon also remained present during the procedure due to the location of Don’s tumor and the increased risk it posed. All in all, the surgery went well despite its high degree of complexity. When Don awoke from the operation, he remembered something clearly.
A nurse, dressed entirely in white protective gear due to COVID-19 protocols, was moving her hands over him and praying softly in Russian. In his groggy state, he thought she might be an angel and asked her as much.
Yet, at his follow-up appointment about two months later, he saw her again and recognized her immediately. They embraced, sharing a powerful moment he remembers well years later.
Whenever something negative would come into my mind, I’d delete it and move on, like a video recorder.
While Don feels gratitude to that nurse and the rest of his care team, he also did his part to streamline his recovery, making a point to get up and move as soon as it became feasible. When the nurses encouraged him to walk a lap around the hospital to prevent blood clots after surgery, he did that and then some, completing five or six laps as his body allowed. Once a licensed plumber, Don was accustomed to a physical lifestyle, and he believes this helped him regain his strength and footing faster than predicted.
While Don was able to recover faster than some, he found that his success led to something many don’t anticipate: survivor’s guilt. Surviving something so many don’t can take a toll on mental health, and, in Don’s case, his condition eventually progressed to the point where doctors diagnosed him with severe post-traumatic stress disorder. He found himself struggling to sleep more than about two hours a night.
Don’s wife encouraged him to seek help, and he found that therapy made a notable difference.
“What used to be taboo is now pretty much normal for people who’ve been through such traumatic surgeries,” Don said. “I highly recommend it.”
As a result of his own experience, Don has also begun speaking more openly about the importance of prioritizing mental health, particularly for those who undergo intense operations like the Whipple.
“Whenever something negative would come into my mind, I’d delete it and move on, like a video recorder,” Don said.
While maintaining a strong mindset helps Don navigate life after cancer, so, too, does having a strong support system – something Don was fortunate to have every step of the way.
“It wasn’t just me who went through it,” Don said, emphasizing the critical role caregivers play in a cancer experience. “My wife, being the caregiver, went through the same emotions as me.”
Today, Don’s wife also helps him navigate the long-term effects of treatment, which include chronic kidney disease resulting from a combination of chemotherapy, diabetes and dozens of CT scans. Don sees his PCP and a gastrointestinal specialist regularly, and now, about seven years after his initial cancer diagnosis, he sees his oncologist as needed, rather than at set intervals.
Despite his ongoing health challenges, Don moves forward with a sense of purpose and a strong desire to share his own story to raise awareness of pancreatic cancer and its symptoms. He often wears purple, the color tied to pancreatic cancer awareness, and uses it as a conversation starter whenever possible.
He also strives to help more people recognize potential signs of pancreatic cancer, among them sudden-onset diabetes, unexplained weight loss, abdominal distress, high blood pressure and steady fatigue. He believes this is especially important in rural areas like his, where many people have limited access to medical specialists. Don also hopes to see improvements made in the area of early detection similar to how colonoscopies help identify colon cancer and mammograms, breast cancer.
While Don believes there’s still a long way to go in terms of treating pancreatic cancer, he points out some encouraging developments in the field, including overseas work involving removing the outer layer of cancer cells to help bodies better fight the disease.
He also supports a variety of causes and efforts that raise funding for research and awareness about pancreatic cancer, including the Whitney Marsh Foundation. Founded and led by U.S. Air Force member and Miss America 2024 Madison Marsh, who created it after losing her mother to the disease, the foundation aims to help people in rural Arkansas gain access to the doctors, knowledge and resources they need to fight it.
Don also continues to adjust to a “new normal” after treatment. He’s had to change his diet completely, and he’s also developed a deeper understanding of, and compassion for, others with serious illnesses. He also takes calls from others facing pancreatic cancer and makes a point to hear them out and answer any questions they may have openly and honestly, regardless of the subject matter.
He also encourages those he speaks with to seek support, whether through therapy, faith or connecting with others who understand what they’re facing. In Don’s case, faith played an instrumental part in his recovery, with his church family stepping up, praying for him and otherwise helping him navigate hard moments.
Don knows he can’t change what he’s been through, but he knows this much: paying attention saved his life. And if one person can now recognize the signs of pancreatic cancer sooner, then his story was well worth sharing.
