The Survivor Council is a group of volunteers created to ensure the survivors’ voice, experience and expertise are integrated into the Pancreatic Cancer Action Network’s programs and initiatives.
Back row, left-right: Michael Weinstein, Ralph Cheney, Scott Nelson, Gil Marchman, Mayor (Ret.) Larry Clark
Front row, left-right: Diane Borrison, Roberta Luna, Cathy Schwandt, Dennis Cronin
Her Whipple was performed at a high volume institution and followed by six months of chemotherapy. For the next five years, she was followed closely with blood tests and scans. And after that period of time – nothing. Diane doesn’t think she is “cured” because she knows the monster can return. But for now, she is cancer-free.
Diane began volunteering with the Pancreatic Cancer Action Network about a year after her diagnosis by helping with “Walk through the Vineyards” in Napa Valley before national PurpleStride events began. From the start, she loved the enthusiasm of the volunteers and staff as well as their determination to make a difference. Diane has been the local Advocacy Chair for eight years and travels to Washington, D.C., every year for National Pancreatic Cancer Advocacy Day. She was proud and honored to be awarded Advocacy Coordinator of the Year at our national volunteer meeting in 2013.
Diane has also been actively involved with fundraising both for PurpleStride Silicon Valley sponsors and making connections with individuals who continue as larger donors for the Pancreatic Cancer Action Network.
Diane is a retired business woman. For many years, she has served on the Leadership Council for the Silicon Valley American Cancer Society. She especially enjoys spending time with her friends and family, including seven grandchildren. She loves art, music and exploring new things and places.
She has lost many friends to pancreatic cancer and volunteers in their memory, determined to raise awareness about the disease and the services provided by the Pancreatic Cancer Action Network’s Patient Central.
Ralph has been involved with the Pancreatic Cancer Action Network since his diagnosis. He serves as a Survivor and Caregiver Network volunteer, a Community Advocate and now a member on the Survivor Council. Ralph and his wife Mariann are the past recipients of the Randy Pausch Award and Community Representatives of the Year. Additionally, they received The Society for Surgery of the Alimentary Tract Public Service Award in Washington, D.C., in May 2015 for their work in the pancreatic cancer community.
Ralph is a former supervisor for Cardinal Health, a Vietnam combat veteran and a prostate cancer survivor. He is also a certified peer to peer mentor for post-traumatic stress disorder (PTSD), traumatic brain injury (TBI) and suicide prevention.
Despite his illnesses and challenges, Ralph has consistently delivered a message of hope to everyone he meets. An avid bass fisherman, he lives on Swinging Bridge Lake with Mariann and their four Labradors: Ace, Caroline, Holly and Gator.
Dennis is the Chief Risk Officer for the Highmark Health (Blue Cross/Blue Shield) group of companies and also oversees the treasury functions. His employer has been the presenting sponsor for PurpleStride Pittsburgh for four of the last five years, and other Highmark Health companies have also been sponsors at various levels.
Dennis lives in Pittsburgh with his wife and two children, Tyler (a sophomore at the University of Dayton) and Nikki (a junior in high school).
Roberta’s journey with pancreatic cancer began in 1964 when she was only 9 years old. That was the year she lost her grandmother to the disease. She was not old enough at the time to know anything about cancer, nor how it would continue to affect her life some 30 years later.
She never imagined the very same disease would take her father, her mother, her grandmother and her uncle. She never could have imagined that, on April 1, 2002, she would be diagnosed with stage III pancreatic cancer with an inoperable tumor due to vessel and artery involvement. It was unimaginable that she too would hear the words, “I’m sorry…it’s pancreatic cancer…go home and put your house in order.”
Roberta began volunteering with Pancreatic Cancer Action Network in 2008 after attending her first Advocacy Day. Hearing the stories and feeling the pain of others who had also been devastated by this horrific disease, she soon realized that very few of those in attendance were survivors. Most were there because they had lost someone they love to pancreatic cancer. She felt an overwhelming desire to speak for those who were unable to speak.
“The two most important days in your life are the day you are born and the day you find out why.” During her first Advocacy Day, Roberta knew she had found what she was meant to do. She had found her destiny. She began her relationship with the Pancreatic Cancer Action Network as a general volunteer with the Orange County Affiliate and soon jumped into the role of Media Representative. A few years later, she became the Affiliate Chair and now looks forward to a new and challenging role that will help her reach out to more patients, survivors, their families and medical professionals. She is extremely proud to be part of the Survivor and Caregiver Network and a member of the inaugural Survivor Council!
Roberta loves spending time with her husband, two adult sons, three rescued cats and rescued Siberian Husky. She loves to cook, she is hooked on James Patterson and she finds great comfort and peace in making one-of-a-kind rosaries. Her favorite “ah-ha” moments include completing her first half marathon, jumping twice from a perfectly good airplane, receiving the Randy Pausch Award in 2012 and seeing over 140 researchers present at the 2016 Community Outreach Leadership Training.
She was a family law paralegal for over 25 years, but she finds what she is doing now so rewarding that volunteering has become her full-time job. Her family is very supportive and understanding of her deep commitment to being a voice for those who are affected by this disease, to raising awareness for a cure and to Wage Hope.
As a survivor, Roberta strives to give hope to others so no other family has to hear, “I’m sorry…it’s pancreatic cancer…go home and put your house in order.”
On September 30, 2001, the Whipple procedure was performed. Thirty-five days later he was released from the hospital and was told to prepare for chemotherapy and radiation. He was willing to take chemotherapy, but his doctor told him that all the cancer was removed, so Gil saw no need for radiation. He started becoming educated on pancreatic cancer and discovered that he was one of the lucky ones, but his expiration day could be close. His education made him aware of the many clinical trials in progress at the time, so he got in touch with several and was accepted into a trial in May 2002 at the National Institutes of Health (NIH) in Bethesda, Maryland. Eighteen months later he finished the trial and appeared to be cancer free, based on a blood test and scans.
Scott has been a member of the Survivor and Caregiver Network for a number of years, speaking to newly diagnosed patients and their families. He also recently served as the research advocate on the Pancreatic Cancer Action Network’s RAN and RAN-2 Grants Committee, helping to make decisions on which research proposals to fund.
Scott also works with Mayo Clinic as a co-founder of RAPPORT, a patient and caregiver research advocacy group supporting Mayo Clinic’s Pancreatic Cancer Specialized Programs of Research Excellence (SPORE). The National Cancer Institute (NCI) established SPOREs to promote interdisciplinary research and speed basic research findings from the laboratory to the patient. He was also a co-founder of a second research advocacy group at Mayo that includes research advocate representatives from all of the various cancer research teams at Mayo.
Additionally, Scott has served as the research advocate on the University of Minnesota (UMN) Pancreas Cancer Research Team, providing a patient perspective to the cancer researchers. In that role, he also created ongoing support groups for patients and their families and helped UMN raise community awareness of their pancreas cancer research program. In 2014, Scott, in a patient advocate role, completed a review of the UMN cancer patient experience process, focused on the information and support resource needs of patients and families as they go through initial diagnosis, through treatment and after care, including survivorship. Based on that review, a number of positive changes have since been made in the UMN cancer patient experience. Scott also founded and co-leads the Oncology Patient Council at UMN and serves as a member of the UMN Hospital Patient Advisory Board.
Scott recently helped the Minnesota Cancer Alliance, a group run by the State of Minnesota Department of Health and representing over 100 medical and health insurance organizations charged with leading the fight against cancer in Minnesota, by helping them rewrite their current 5-year strategic plan to fight cancer in Minnesota.
He also participated in the recent Cancer Moonshot conference as a panelist on their clinical trials program. Scott is also an alumnus of the NCI Survivor/Scientist program.
When he’s not volunteering, Scott enjoys spending time with his family and discovering life’s adventures, both large and small.
Cathy had never heard of the Pancreatic Cancer Action Network. In April 2013, her friend informed her that she had formed a team for a pancreatic cancer walk. Two days after her Whipple, on August 3, 2013, her friends and husband walked in PurpleStride Columbus and Skyped with her while she was in her hospital bed.
She went to her first affiliate meeting in December 2013. After attending a few meetings and actually meeting another survivor in the group, Cathy went to Advocacy Day and volunteered to become the Community Outreach Chair. She hasn’t looked back.
Cathy feels she survived for a reason – to be a voice for this disease. In 1980, she was diagnosed with breast cancer. She was on the education committee of her local Susan G. Komen affiliate for many years. What she learned there she is putting to work at the Pancreatic Cancer Action Network. She wants to make purple the new pink, and this has become her passion. It is Cathy’s goal to get other survivors involved to have their voices heard, believing it is their responsibility.
She recently retired from the real estate industry. Not knowing what tomorrow may bring puts things in perspective for Cathy. She believes we must do what we love and not put off until tomorrow what you can do today.
Cathy and her husband of almost 30 years plan on traveling over the next couple years, seeing this great country and trying to find a place to settle down for the next 20+ years where it is warm!
When Michael was diagnosed, he was told that his tumor was inoperable because of the location and the impingement of a major vein. After being treated for one year with various radiation and chemotherapy treatments and visiting numerous cancer institutions, it was determined that he had been misdiagnosed as to the specific cell type.
Michael then had to begin additional chemotherapy treatments for the correct cell type. In October 2007, Michael went to Houston, Texas, and had a bypass of the vein as well as the required resection of the tumor and associated Whipple surgery. After 12 hours of surgery, he had a bad reaction to a blood transfusion, and his lungs filled with fluid. He was clamped, packed in towels, wrapped in Saran wrap and sent to the intensive care unit for the night. After being stabilized, the surgery was completed the next day. Michael was unconscious for eight days and had a heart attack during that period of time. Even after he finally woke up, it was not easy. He spent another 40 days in the hospital with various infections.
Finally, after a 50-day hospital visit, Michael was released, and another 10 days later he was able to leave Texas and return to New Jersey. Michael remained cancer-free until his scans in August 2012 showed some spots on his liver and pancreas. These areas responded well to treatment, and again he was cancer-free. Michael is now being treated for his second recurrence.
Michael was introduced to the Pancreatic Cancer Action Network by his wife, Nancy, who discovered it on the internet while researching the disease. He joined the New Jersey Affiliate (now the North Jersey Affiliate) in January 2008, just after he returned from having Whipple surgery in Texas. He has been the Advocacy Chair since filling the role vacancy in August 2009. Michael has attended and been the State Leader for New Jersey for seven Advocacy Days. In 2011, he received the Randy Pausch Award as well as the Advocacy Chair of the Year.
Michael has two grown daughters, Bethany and Marla, who along with his wife Nancy support his efforts with the Pancreatic Cancer Action Network by attending Advocacy Day and walking with him in the New Jersey and New York PurpleStride events. He lives in Millburn, New Jersey, and is a retired CPA who enjoys gardening, volunteering and taking those afternoon naps.
Stu Jed – Founding Member
Eight months later, after a clinical trial of intensive chemotherapy, Stu was offered a second chance for surgery. During the 16-hour operation, the surgeon removed the entire pancreas, spleen and 1/3 of his stomach. He became an insulin-dependent diabetic. The pathology report came back as both pancreatic adenocarcinoma and neuroendocrine cancer – very rare.
Stu spent 44 years in healthcare as a hospital CEO and had experience owning more than 20 hospitals in his career. Stu also appeared before several federal and state committees to discuss how the government could get more involved not only to fund research, but also to find better ways to fund and operate the U.S. healthcare system. He believed the time was right to develop innovative ways of delivering healthcare to all. What surprised Stu is that one of his first hospitals in the United States had a Cancer Center in the late 1970s, and we are still fighting the cause today.
Stu enjoyed many years of durable remission. He continued to ski, hike, travel, go to the gym, spend time with his children and grandchildren (who were not born when he was diagnosed), enjoy friends and advocate to make pancreatic cancer a chronic disease rather than a death sentence.
However, in October 2015, a bone scan showed that the cancer had returned. Though not usual for pancreatic cancer, the cancer was in his bones, including the hips, pelvis and spine. In addition, lesions were found on his brain, which was also rare. The pathology report showed something else unusual – the pancreatic adenocarcinoma and neuroendocrine cancers had merged together into each cancer cell. Six months of additional chemotherapy and brain radiation caused him to be optimistic that he may have pushed the disease back into remission. However, that was not the case. Stu was taken off all chemotherapy and put on outpatient hospice care in June 2016.
Stu’s “never say die” attitude continued. He made plans to travel to different National Parks in the United States, visit his grandchildren and take cooking classes. The one activity that helped Stu a lot was continuing to write letters to all his grandchildren letting them know how much he loved them, their parents, their grandmother and the lives they are living. He wanted all to know how much they all meant to him and that love is the answer.
Editor’s note: Stu Jed was the inspiration behind the creation of the Survivor Council. We are immeasurably grateful for his numerous contributions to our cause – the countless hours he and his wife, Ginnie, put in as volunteers, advocates, donors… Stu passed away in December 2016, but his spirit lives on as we continue to fight for a better future for every pancreatic cancer patient.
Mayor (Ret.) Larry Clark
Within 10 days of initial diagnosis, Larry was able to have a successful distal pancreatectomy over 7 1/2 hours at a high volume institution in Southern California. In this life-saving surgery, Larry lost 40 percent of his pancreas, his spleen and 20 percent of his stomach.
After recovering from this major surgery, Larry participated in a clinical trial studying immunotherapy and chemotherapy in pancreatic cancer for the next year. During this period, he experienced no evidence of disease and was hopeful that his war with pancreatic cancer had been won. Unfortunately, this turned out not to be the case.
Today, Larry is tremendously grateful and blessed to be a stage IV pancreatic cancer survivor for nearly four years, having successfully endured eight recurrences starting in summer 2014, when his cancer metastasized over the next two years to multiple areas of his body. Larry’s “medical dream team” strategized with him on state-of-the art treatment protocols to beat back his pancreatic cancer.
At the end of 2009, Larry completed 20 years in publicly appointed and elected city and state leadership positions. These roles included being twice elected to Rancho Palos Verdes City Council serving as Council Member, Mayor Pro Tem and retiring as Mayor. Larry was twice appointed to the California State Coastal Commission, serving from 2005-2009.
Early in 2012, Larry completed a distinguished 40-year federal government career acquiring and managing critical national and international defense space, communications and information systems for the United States Air Force, Department of Defense, National Reconnaissance Organization and NATO. He held senior executive positions in the United States and at NATO in Brussels over the last 31 years of his career.
In October 2013, at the last Evening with the Stars gala, the Pancreatic Cancer Action Network awarded Larry the Spirit of Hope Award.
In February 2014, Larry was honored to be named one of five National Ambassadors as an inaugural member of the Ambassadors Circle for the Pancreatic Cancer Action Network.
Over the past three years while fighting his pancreatic cancer, Larry has twice chaired the Executive Committee for PurpleStride Los Angeles. During this period, he, along with corporate and community sponsors, raised hundreds of thousands of dollars for pancreatic cancer research.
Larry has been a frequent requested speaker on the subject of pancreatic cancer at various forums and has done numerous print and TV interviews, candidly sharing his survivor’s journey and bringing greater awareness and hope to those afflicted with pancreatic cancer.
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