By Joe Barone-
It is a frustrating, one-word question many of us exclaim when something in our lives seems completely surreal.
Oftentimes, it’s provoked by something so egregious and so incomprehensible that we can only muster up this first reaction in our minds.
It was the response by Michael and Debbie, whose full names have been omitted to respect their privacy, when Michael was blindsided by a very aggressive Stage IV pancreatic cancer diagnosis in a Maryland emergency room in late October 2012.
“He was the healthiest man in the world,” his wife of 41 years, Debbie, shared. “He didn’t take any medication, and he even played tennis three times the week of his diagnosis.”
All you can do is ask: “What?”
According to Debbie, Michael’s symptoms came out of nowhere. He didn’t have a family history of pancreatitis or pancreatic cancer, and genetic testing didn’t reveal any mutations.
“One day, he said to me: ‘I have these weird symptoms. I have bright yellow urine, and I itch. I’ve been trying not to drink a lot during tennis; maybe I’m just dehydrated.’”
But Debbie knew something was wrong and immediately called her son, a physician in San Francisco, who told her Michael should see a doctor urgently. When they couldn’t get an appointment right away, their primary care doctor advised taking Michael to the hospital.
At the emergency room, doctors completed blood work and noticed Michael was jaundiced. From there, an ultrasound was conducted and detected a large mass on his pancreas. Further tests revealed inoperable masses on his liver and his lungs, leading to the insertion of a stent in Michael’s bile duct the next day. The countless tests and avalanche of distressing results took a mental and physical toll on Michael and Debbie.
In a two-day span, Michael and Debbie were experiencing emotions and thoughts across the spectrum—shock, confusion and sadness, but also determination in pursuing treatment options. While anger may have gripped many in similar circumstances, Michael was consumed with helping others, passing on the reins of his business and putting everything in order for Debbie.
Two weeks earlier, the couple had been across the country, visiting their son and daughter-in-law and playing with their grandchildren. Now, they were fighting back tears and comforting each other in a hospital room following the life-altering news.
“I just couldn’t understand,” Debbie confessed. “I asked my son: ‘What did I miss?’ To which he said: ‘Mom, you didn’t miss anything. He was fine. He was playing with the kids, carrying the kids, everything was fine.’”
Michael passed away in 2013, only 100 days after he was diagnosed with pancreatic cancer. He had just turned 63 years old.
In this short time, as Debbie paid bills by Michael’s side in bed, he gave her invaluable household and financial instructions in a meticulous notebook of crucial information that he created for her almost immediately upon receiving his diagnosis. It was a final act of love for his cherished wife; he was determined to continue caring for her.
“Going through this unpredictable disease changes you. It refocuses you, puts things into perspective,” she said.
It’s why, after some time for herself, Debbie got involved with the Lustgarten Foundation. She felt the need to give back and honor Michael.
“I believe that this is an excellent charity because all donations directly fund research, rather than administrative costs,” she said. “The Lustgarten Foundation does great things for patients and families faced with pancreatic cancer, and that’s why I started to get involved.”
“I couldn’t look at any websites for a long time,” she admitted. “It was too painful to reflect on the depth of what had happened. We had no time to do anything. It was too fast. Michael went from feeling fine to being intensely ill, and none of the available treatments were effective.”
Since 2018, Debbie and her family have donated to the Foundation. In 2019, they were invited to the opening of Lustgarten’s new dedicated pancreatic cancer research laboratory at Johns Hopkins in Baltimore, MD. Along the way they also have taken part in the Foundation’s Pancreatic Cancer Research Walks both in person and virtually. In 2021, Debbie and a friend sponsored the Foundation’s Doctors’ Day matching gift program.
“I’ve learned this terrible disease can come out of nowhere, even if you’re completely healthy and have no risk factors,” Debbie said. “That’s why we need to continue to fund research for early detection, treatment and a cure.”
Our hearts are broken at the news of the passing of Lustgarten friend, Steve Price of New York, NY. A passionate and insightful pancreatic cancer advocate and patient, Steve understood the urgency of moving the research along quickly and the importance of investing in the most innovative science with the greatest opportunity to drive real progress. Steve kept up with every advancement and promoted the Lustgarten- funded Organoids for Personalized Therapy research study at the Lustgarten Foundation Dedicated Pancreatic Cancer Laboratory at Cold Spring Harbor Lab. In the study, researchers develop organoids—a revolutionary 3D cell culture—from patients’ pancreatic tumors to analyze its genetics, biology and drug sensitivity to determine the most effective chemotherapy regimen.
Shortly after Steve participated in Lustgarten’s New York City Pancreatic Cancer Research Walk, that happened to be emceed by his brother Dave Price, a journalist and weather forecaster with WNBC-TV in New York City. A week after the walk, Steve wrote to the Foundation:
“I came home from Sunday’s event filled with optimism. At the risk of stating the obvious, what Lustgarten is doing means a great deal to me and others like me. Yesterday, when I told a new patient pal in my doctor, Allyson Ocean’s office, about the 1000 people gathered to fight for us, I saw her pain ease and her spirit lift. I’ll be wearing my “HOPE” hat with pride when I go in for chemo tomorrow. More importantly, I’ll be holding that message in my heart as I work toward earning the right to wear the hat that says “SURVIVOR.”
Steve’s cancer experience led to Dave joining the board of directors for Let’s Win Pancreatic Cancer Foundation. An affiliate of the Lustgarten Foundation, Let’s Win is an interactive online community where patients and families share information and experiences about new, innovative science-driven treatments and learn about the latest research breakthroughs and clinical trials in the fight against pancreatic cancer.
As much as Steve admired the Lustgarten Foundation, we admired him even more. We echo the sentiments Dave posted following Steve’s death:
“Today, my incredible brother, Steve, passed away from Pancreatic Cancer. His death is simply shattering to all of us who loved him—and who were loved so much by him. He was a beautiful example of goodness and heart and soul and righteousness and intellect and personality—the ‘ands’ could just continue on.
My brother fought his disease with determination, vigor, positivity and selflessness. Throughout his whole ordeal, he never stopped giving: sharing his love, imparting his knowledge and extending his friendship to everyone who crossed his path or walked it with him. He left us with learnings that will help those who battle cancer in the future, do so with even greater success and less suffering.
It would be easy to slide into despair today and just focus on Steve’s loss — but as much as I hurt, I am grateful. Doctors, nurses, medical staff, social workers, volunteers, advocates, friends, family and complete strangers locked arms with Steve and gave us 4 1/2 years that we never expected. Every day was hard-fought and won. Every day was precious.
Someday it will become more common to survive this dreadful disease and someday Pancreatic Cancer will be conquered — and when that happens, we’ll have the medical ‘saints’ who cared for Steve to thank. But credit will go to my brother as well, for he was not just a patient, but a full partner in his treatment and its success.
I miss Steve so much already—and I will forever, but he left me with an enduring gift: A model for how to lead a meaningful life. I will hold his memory close for the rest of my days and forever be proud of the way he lived.
We send our deepest condolences to the Price family. May his memory be a blessing to all who knew him.