By Kaitlin Carney
MONGAUP VALLEY — September 7, 2010 — When you ask Ralph and Mariann Cheney how they can look at life with tremendous hope, to inspire others in spite of the insurmountable odds that they have overcome, their answer is as simple as it is inspirational: “How can we not?”
Ralph and Mariann were a regular couple living an everyday life on the shores of Swinging Bridge Reservoir in Mongaup Valley with their dog when the figurative walls caved in. Ralph had been experiencing pain and discomfort ranging from annoying to extreme, and was diagnosed with pancreatitis in June of 2004. After his second bout in November he was considered chronic.
As the Cheneys say, the pancreas is in a “bad neighborhood” and early detection of pancreatic cancer is tough without other symptoms (jaundice, weight loss, itching) depending upon the location of the tumor.
The repetitive discomfort with lack of medical certainty brought Mariann to Google “Columbia Presbyterian.” Mariann’s determination and questioning of the initial diagnosis meant that Ralph got top-notch care at what is now known as the Pancreas Center. The doctors and staff there would become the Cheney’s new family.
stunning news
In 2005 the Cheneys were at home after a six-day stay at the noted hospital when Mariann was told Ralph’s diagnosis. Testing at Columbia Presbyterian revealed he had pancreatic cancer – and she was numb. Their worst fears were realized and their plan was simple: be positive, fight, get involved, advocate, and learn.
Ralph and Mariann reached out again and found the Pancreatic Cancer Advocate Network (PanCan) Ralph knew to be positive in the face of a statistically grim disease; he needed to surround himself with positive people. The Cheneys refused the easy path of feeding off of each other’s insecurities or create a bucket list.
PanCan has a subgroup called P.A.L.S., an acronym that stands for Patient Action Liaison Service. It wasn’t just information on clinical trials, but also there was a real live person, a survivor, that Ralph could speak to. Ralph found a man in Arizona who had a complete pancreatectomy. He was a great long distance friend with similar struggles, and a seven year survivor. He talked Ralph through the hard times before cancer came back to take him.
As part of the healing process, Ralph and Mariann jumped into PanCan and the P.A.L.S. program head first. They connected to the national network and strangely as they broadened their reach found people in their own backyards.
PanCan was in its infancy and was starting to get involved with awareness, funding, governmental affairs and the development of a patient service network. The Cheneys felt a need to be a part of the PanCan family and made a commitment to go to Washington, DC, to lobby in the capitol.
As the Cheneys will tell you, there is statistical evidence to support the fact that higher-funded research initiatives have longer life expectancies for their survivors. Only two percent of the $5 billion of funding of cancer research is funneled towards pancreatic cancer (per National Cancer Institute 2009).
message of hope
Pancreatic cancer doesn’t have a spokesperson, because most famous people (Michael Landon, Patrick Swayze) who have battled the disease succumb to it.
Randy Pausch, whose widow Jai is also an involved with PanCan and a friend of the Cheneys, put pancreatic cancer in the spotlight with his “Last Lecture” at Carnegie Mellon Institute. It would go on to become a YouTube phenomenon and become a bestselling book.
On March 13, 2008, Pausch advocated for greater federal funding for pancreatic cancer before the United States Senate Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies. Sadly, he succumbed to pancreatic cancer complications in July of 2008.
The Cheneys continue with their message of hope. They are helping to lobby the HR745 Pancreatic Cancer Education and Research bill through the House, as well as Senate bill S3320. They found particular success with local politicians: in their first meeting with Maurice Hinchey he signed on right away.
The Cheneys advocated on the Hill in Washington, D.C. and were inspired by the others surrounding them: “They are a sea of people that understand, they get it, they live it” – they work to educate medical professionals, find clinical trials, and help others who are diagnosed.
The Cheneys also struggle with the reality that most of the people they have helped or connected with are gone. They wrestle with the guilt of being a statistical miracle in a group of relatives (94 percent of pancreatic cancer patients die within five years of diagnosis.)
And they continue on. In 2010 the Cheneys were awarded the “Randy Pausch Award for Community” from PanCan. They had joined the ranks of accidental celebrities
Ralph and Mariann didn’t set out to become advocates or lobbyists; they set out to beat Ralph’s cancer. The other titles were survival tools gained along the way. Ralph is a survivor and one of very few, and notes if the Cheneys can reach out and help one person not have to go it alone, it means more than any accomplishment or award.
You can reach out to the Cheneys through PALS or, as Ralph says, “We’re in the phonebook.”
PanCan can be reached at 877-272-6226 or at www.pancan.org.