Although Stephannie helped take care of her grandmother, she wasn't her caregiver in the traditional sense. When asked to describe her grandmother, Stephannie lovingly replied: "tomboy and lace." Stephannie visited her grandmother everyday after work. While others took care of her grandmother's physical needs, Stephannie took care of her emotional needs, which were just as important. Whether it was reading stories, telling jokes, or modeling, Stephannie and her grandmother shared very special times together. Not yet over the loss of her beloved grandmother, Stephannie finds herself dealing once again with a loved one's diagnosis of pancreatic cancer. This time it is her mother-in-law, a woman she loves and respects, who obviously feels the same way about Stephannie and asks her to be her caregiver. Stephannie felt honored and she and her family moved to be closer to her mother-in-law. Stephannie assumed the full responsibility of being her mother-in-law's caregiver, sometimes upsetting other family members. Stephannie shares her experiences as a caregiver in different capacities.
“As long as you speak my name, I shall live forever."
This episode of Living Hope is dedicated to Viola Galvan and Trang Huyng.
LISA POFF (October 5, 1959 - August 31, 2022)
Lisa Poff is the Chief Marketing Officer at The Colony Group. She enjoys cooking, running, reading and traveling. Lisa had excruciating back pain which she attributed to overexertion from her love of running. X-rays on her back didn’t show anything. Since she was also having digestive issues and just didn’t “feel right,” it was decided she would make an appointment with a GI doctor. Due to the COVID pandemic, she wasn't able to get an appointment right away. When she was finally able to get an appointment, an ultrasound was done. Lisa looked up at the screen and saw nothing but her pancreas. She had a horrible feeling and remembered a colleague mentioning his wife was a medical student and she would always say "don't F with the pancreas." When she didn't hear back from the doctor, she felt everything must be ok. They finally got back to her and said, "We found something. We need to get in there right away." It took two weeks to get the biopsy and the waiting time felt like an eternity. Getting the news from a resident was a horrible experience. Lisa shares her journey and talks about chemotherapy, trying to relearn her body again, and trying to live life with a new normalcy.
“As long as you speak my name, I shall live forever."
This episode of Living Hope is dedicated to fellow pancreatic cancer survivor, Jenna James.
Monica lost both of her parents to pancreatic cancer, first her mother and later her father. Her mother wasn't given many options - either chemo or let nature take its course. With the low survival rate, the decision was made to let nature take its course. Being a researcher, Monica googled "pancreatic cancer" and found a chat group. After reading a few stories posted by family members of pancreatic cancer patients, Monica felt her mother had been given a death sentence. After losing her mother in 2003, she continued to do research but found nothing was really being done. She joined PanCAN's Albuquerque, New Mexico Affiliate in 2012 after attending her first PurpleLight event. Monica always loved to volunteer. When pancreatic cancer ended up choosing her mother, that lead her into the direction of volunteering with PanCAN. Monica is the Social Media Chair of PanCAN's Michigan Affiliate and has also served as the Advocacy Chair. The first thing she tells people she meets who have either been diagnosed or have family members who have been diagnosed is to contact PanCAN: "I'd let them know there is hope... not to give up." Monica hasn't really come to terms yet with losing her father, and she is still mourning her mother. Losing both parents to pancreatic cancer has motivated Monica to be more involved and invested in the fight against pancreatic cancer. Quoting one of her favorite researchers, Dr. Howard Crawford, she says, "It can be beat." Monica's goal is to raise as much awareness as possible to keep her mother's legacy alive. She says, "I don't want her to ever be forgotten and she won't be forgotten through me or the work that I do."
“As long as you speak my name, I shall live forever.”
This episode of Living Hope is dedicated to Monica's mother, Ranjana Upadhyaya.
You can reach Monica through the affiliate facebook https://www.facebook.com/groups/2095769850634842
or email email@example.com
MAIL BAG - Q & A
What is the pancreas, where is it and what does it do? Can you live without your pancreas? What do you do after getting a pancreatic cancer diagnosis? Hear the answers to these questions and others.
Tori Larrick, Patient Service Manager with the Pancreatic Cancer Action Network (PanCAN) guides us through clinical trials, answering questions like what to expect and why clinical trial participation is safe. Tori provides clarification on what the Institutional Review Board (IRB) is. An IRB consists of at least five members of varying and diverse backgrounds having the professional experience to provide appropriate scientific and ethical review. An IRB must have at least one scientist member and at least one member whose primary concerns are nonscientific. Tori encourages anyone considering clinical trials to feel comfortable with reaching out to PanCAN's Patient Services to ask questions. They are happy to talk through any fears or concerns you may have before making a decision.
You can reach out to PanCAN's Patient Services on their website, pancan.org, or call 877-2-PANCAN or email firstname.lastname@example.org.
Karen Mooney, a Board-Certified Registered Nurse with more than 12 years of inpatient oncology experience at an acute care hospital, joins us again to share information about barriers in clinical trials.
Tori Larrick, is a Manager ll, Patient Services with the Pancreatic Cancer Action Network (PanCAN). Tori has been with PanCAN for five years and was drawn to the organization due to the loss of her father to pancreatic cancer. Tori supervises a team of case managers in the Patient Services department, which provides information and resources to patients and families affected by pancreatic cancer. Tori oversees the GenomOncology Explorer and biomarker search process for the Patient Services team and has extensive experience with clinical trials. Tori brings to light the importance of clinical trials for those diagnosed with pancreatic cancer and debunks the myths of clinical trials.
“As long as you speak my name, I shall live forever.”
This episode of Living Hope is dedicated to Tori’s father, Tim Larrick.
Colleen LaSalle shares her journey with her husband, John, who was diagnosed with stage lV pancreatic cancer. John was put in a clinical trial and was told that with chemo, he would have a life expectancy of three years, and without chemo, one year. Sadly, John was gone in four months. Colleen was John's caregiver. It was difficult - she went from being his wife to being more like a parent. She shares how she had to keep things as normal as possible for their two daughters. Colleen received no training or advice on how to be a caregiver; it was a "learn as you go" experience. Colleen has gone from being a wife and mother to caregiver, volunteer and advocate. She wants to be there for others, to offer them the support and knowledge this journey has brought her, something that unfortunately she learned along the way. Colleen and her girls are involved in bringing awareness and advocacy because they don't want John to be forgotten. In their words, "he was here, he was important, he will always be important." January is Clinical Trials Awareness Month and finding out John was in a clinical trial with an oral chemo that sadly did not help him but helped many pancreatic cancer survivors, including myself, was emotional for me but really brought the importance of clinical trials to a different meaning.
“As long as you speak my name, I shall live forever.”
This episode of Living Hope is dedicated to John LaSalle.
PAUL ROBERTS & ROBERTA LUNA
A Year in Review
Looking back, this has been an amazing year for Living Hope and for myself. Coming out of my comfort zone, going from Podcast Producer to Podcast Producer and Podcast Host! Never in my wildest dreams did I ever think I'd be here doing this. This year we have shared my personal journey as well as the journeys of so many. 2021 has been anything but normal, but hopefully the journeys shared have given us all hope and have inspired us in some way. Though many of the journeys did not end the way we wanted, we shared in the tears, the laughter, and the understanding we aren't alone. In 2022, we look forward to hearing from you. We look forward to sharing your journey and ideas of what you'd like to hear more about. Some may be controversial, but we hope you take something positive away from what you may hear. In closing, this episode of Living Hope is dedicated to all those who shared their journey, who watched or listened to Living Hope, and the many non-profits that supported us, helping us get off the ground. A special thank you to Dawn Kamber, Public Affairs Director/Podcast Host of Impact OC, who started this many years ago, and Paul Roberts, CEO and Station Manager, who came up with the idea.
The holidays for most of us are usually a time of joy, family gatherings, and making lasting memories. However, this wonderful time of year can also be very stressful for pancreatic cancer patients and their caregivers. In this episode, we talk with Courtney Sparkuhl about dealing with stress during the holidays. Courtney is a licensed clinical social worker at UCI Health's Comprehensive Digestive Disease Center (CDDC) who provides supportive counseling and resource connections to patients with IBD, colorectal disease, and liver and pancreas diseases and cancer. Courtney is also a Pancreatic Cancer Action Network Patient Champion (#PatientChampion), which is a healthcare professional who shares PanCAN's resources with pancreatic cancer patients. In addition to the great advice Courtney shares with us in this episode, she has also provided some great resources we have linked on our Resources page.
Nikki was an oncology nurse practitioner for 15 years in the Chicago area. Nikki relocated to Nevada and began volunteering with the Pancreatic Cancer Action Network's Nevada Affiliate. Nikki’s journey with pancreatic cancer started when her brother-in-law was diagnosed in February 2014 and died in November that year. She made a promise to him that she would continue the fight and work on bettering the outcome for patients and for families. She continued his fight by first volunteering with the Nevada Affiliate and later retiring from nursing to go on to her current position with PanCAN as a Case Manager in their Patient Services group. Nikki connects with newly diagnosed patients and their families, and provides them with information and resources to allow them to make informed decisions. Nikki provides great information on what Patient Services is and does, and she leaves us with an important message: “Everyone needs to be their own advocate. You have to push if you know something is different with your body and make sure you see your health care provider. We’re your purple family that can help support you, so please utilize us.”
This episode of Living Hope is dedicated to PanCAN's Patient Services and all its case managers. They play an important role in the patient and caregiver journey.
Karen Mooney, a Board-Certified Registered Nurse with more than 12 years of inpatient oncology experience at an acute care hospital, shares her passion for not only assisting with the cancer patient's journey, but also the caregiver's journey as well.
US Army Ranger Veteran and pancreatic cancer survivor, Chris Calaprice, traveled 43,000 miles - on a Victory motorcycle to bring awareness. He formed "Road to a Cure," and travel one mile for every person diagnosed with pancreatic cancer that year. Chris shares he "got a little crazy," in 2010, was angry, frustrated, and not only wanted, but needed to do something. Chris was on the road for 9 months, bringing awareness to the streets and small towns, all while doing chemo. Chris and his partner are looking to start a PTSD equine therapy program and refocusing "Road to a Cure," to help veterans and cancer patients with the challenges of survival, survivors guilt, physical trauma, and other concerns. Chris is very open and honest in sharing his feelings and personal journey with pancreatic cancer.
This episode of Living Hope is dedicated to all the men and women serving or who have served our country, and those who are battling pancreatic cancer.
LEE REITLER & DWAINE MATTEI REITLER
On their first date, Lee and Dwaine discovered they both lost their first spouses to pancreatic cancer. What are the odds of going on your first date, talking, enjoying each others company... you feel this amazing connection, and in getting to know each other, you ask the question, "how did your spouse die?" Imagine the dismay they must have felt to realize they both lost their spouse to pancreatic cancer. Lee and Dwaine are open and honest about their relationship, their relationships with their pervious spouses, their losses, how they found each other, their shared passion to help others, and how they keep fighting the world's toughest cancer in honor of their spouses.
“As long as you speak my name, I shall live forever.”
This episode is dedicated to Sally Reitler and Chuck Mattei.
Vice President, Stewardship & Partnerships - Pancreatic Cancer Action Network (PanCAN)
Jenny was attending a conference when she heard Julie Fleshman, President and CEO of Pancreatic Cancer Action Network (PanCAN), speak about her vision of progress to double the survival rate for pancreatic cancer patients by the year 2020. Jenny was so impressed by Julie and her vision that she also wanted to be part of that vision. Jenny picked up the phone and called Julie... that was ten years ago. Though Jenny has filled different positions since joining PanCAN, her position now allows her to oversee partnerships including the World Pancreatic Cancer Coalition. Learn more about PanCAN, the World Pancreatic Cancer Coalition, and why it is so important to have a month and a day dedicated to pancreatic cancer.
This episode of Living Hope is dedicated to Brenda Coleman, a 13 year pancreatic cancer survivor at the time of her death, who said, “At the end of the day, I want everyone to know that our experiences with pancreatic cancer can serve a purpose. Every experience, everyone’s journey, can bring hope and inspiration, if we all work together to make a difference."
Development Manager - Hirshberg Foundation for Pancreatic Cancer Research
A daughter creates a notebook for caregivers to help keep track of medical information for family members and patients seeking treatment. The founder of Hirshberg was impressed and Sarah has been a member of the Hirshberg team for ten years. This year is the LA Cancer Challenge 24th annual event, which always takes place on last weekend of October. The event is fun and festive with a little something for everyone: costumes, events for kids, a trick or treat wall, and more. The event leads up to November, which is Pancreatic Cancer Awareness Month.
Held at UCLA Wilson Plaza Dr Li, the Honorary Medical Chair and Esther Lee, Honorary Starter, a pancreatic cancer survivor at LA Cancer Challenge on Sunday, October 31, 2021
go to https://pancreatic.org/ for their webinar series.
This episode of Living Hope is dedicated in Memory of Jane Dorr-Banks and in celebration of survivor, Esther Lee.
Why is the month of November so important for those affected by pancreatic cancer? Because it gives us a designated month to go the extra mile to bring awareness to the world's toughest cancer. World Pancreatic Cancer Day is a day to nationally recognize pancreatic cancer and is celebrated on the third Thursday of November. This year it falls on November 18th. Join us that day to bring awareness by wearing purple, decorating your home or office, taking a photo, and posting it on social media using the following hashtags: #WPCD, #pancreaticcanceroc, #PancreaticCancer, and #DemandBetter. Also join us for PurpleLight, which is an event to recognize those who have died from pancreatic cancer and honor those who have fought and are still fighting. This year is a little different in that it will be a virtual event in which names are read, luminaire bags and garden rocks are decorated, glow sticks are lit, and positive thoughts are shared to acknowledge our loved ones.
"As long as you speak my name, I shall live forever."
This episode of Living Hope is dedicated to Rosa's grandmother, Rosa Dominguez.
JB's childhood friend, Tyler Noesen, was diagnosed with pancreatic cancer when he was only 25 years old. Tyler invited JB to attend his first Pancreatic Cancer Action Network (PanCAN) Advocacy Day in 2010, leading JB to continue to fight in Tyler's memory and become a volunteer with PanCAN's Orange County Affiliate. As Affiliate Chair, JB has devoted many hours with the core leadership group planning goals for the OC Affiliate's fiscal year 2022. In addition to supporting PanCAN's goals, the OC Affiliate will hold monthly meetings to give updates about PanCAN and the OC Affiliate, speak with special guests, and plan upcoming events. Some of the main goals will be supporting our survivors and caregivers, maintaining federal advocacy efforts, increasing social media presence, and turning Orange County purple!
“As long as you speak my name, I shall live forever.”
This episode of Living Hope is dedicated to Tyler Noesen.
Vic, the OC PanCAN PurpleStride Chair, shares why he became involved and why you should join us for PanCAN PurpleStride Orange County 2022! Do you know how the funds raised by PanCAN PurpleStride fight the world's toughest cancer? Are you interested in volunteering or becoming a sponsor? Find the answers to these question and more.
Chemotherapy is a difficult treatment to go through. However, as difficult as it was, Dawnie found ways to not only help herself get through it, but to help her support group as well. Dawnie is very open about her experience with chemo side effects, neuropathy, and having to learn her body again.
JB Jaso and Tyler Noesen were childhood friends. As life moved on, Tyler married the love of his life and JB went on to join the US Army to serve our country. Even though they had not seen each other for a while, when Tyler was diagnosed with stage IV pancreatic cancer, he asked JB to join him in Washington, DC to participate in Pancreatic Cancer Action Network's National Advocacy Day. JB didn't know what to expect that day, but he was so moved by what he experienced that from that day on he continued to fight alongside Tyler and still continues today even after Tyler's death in 2012. Whether you watch or listen as JB shares his journey, you will be moved as you learn how Tyler teaches us to "Dream as if you'll live forever, live as if you'll die today."
Elissa joined the Hirshberg Foundation for Pancreatic Cancer Research after hearing stories about her sister-in-laws father who had died from pancreatic cancer. Though he died before they met, hearing her sister-in-law share stories about her father, inspired Elissa to get involved. This connection drew Elissa to Hirshberg and she now serves as their Communication Director. She shared her connection to pancreatic cancer, what a Communications Director does and upcoming event "Tour de Pier."
For more information on the Hirshberg Foundation for Pancreatic Cancer Research please visit www.pancreatic.org
PAMELA ACOSTA MARQUARDT
Pancreatic Cancer Action Network (PanCAN) founder, Pamela Acosta Marquardt, shares "What Only PanCAN is Doing." Pam talks about how Patients/Survivors and their families can call "Patient Services," they will be assigned their own personal Case Manager and provided with the most updated resources and information at no cost. Information like "Know Your Tumor," "Clinical Trial Data Base," and the "Patient Registry," along with other helpful information. Updates on PanCAN's Advocacy, Research and so much more is explored.
DR. LEE REITLER & DWAINE MATTEI-REITLER
Lee and Dwaine share their unique journey with pancreatic cancer. An amazing journey of two people who both lost their spouses to this disease and the surprising way they found each other. Wanting to honor their spouses they found a new passion and purpose that leads them to help others battling this disease. Dr. Reitler will also clue us in to what the pancreas is and why it is so important.
KELLY BARBER & WENDI CIHACEK
Kelly Barber and her sister Wendi Cihacek share their journey with pancreatic cancer. Kelly talks honestly and emotionally about losing her husband, George, in 2006 to Pancreatic Cancer. Wendi did the unimaginable and moved across the state to support her sister and help with her niece, Megan, who was 2 at the time. Kelly took her pain and grief and turn it into something positive. She became involved with her local PanCAN affiliate, attending meetings, raising awareness and funds and sharing her journey with members of congress. Not surprisingly Wendi stepped in and supported her at every turn. Kelly shares, “When we first got started, it was just for George. Today, it’s still for George, but it’s also for all the people we’ve met who are alive and fighting.”
AGI HIRSHBERB & LISA MANHEIM
Agi and Ron met by chance when Agi’s father coached Ron’s son’s soccer team. Little did they know that on that day they would meet, fall in love and marry 3 months later. Ron was a real dynamite of a man, they balanced each other immediately. Ron was a thinker and Agi was a doer. Partners in life, partners in business and partners in fighting pancreatic cancer. Losing Ron was devastating but, Agi refused to give up on what they had been fighting for. They were fighting for a cure, they were fighting to live. After Ron’s death, Agi immediately took her pain and grief and turned it into something positive, the start of a foundation in memory of the man she loved. Agi's daughter, Lisa had a promising career of her own. Wanting to support her mother she agreed to help with the foundation while she was on maternity leave. Though she fully intended to go back and pursue her career, 20+ years later Lisa is now the Executive Director for the Foundation for Pancreatic Cancer Research and Co-Founder of the annual event Tour de Pier.
Agi, not one to let any grass grow under her feet started working on the foundation immediately after Ron’s death in May 1997. In July, that same year, the Hirshberg Foundation for Pancreatic Cancer Research was born.
Dawnie Campbell, a Wife, mother, animal lover and a 2+ year pancreatic cancer survivor, shares her journey on how she went from being a energizer bunny to being exhausted. While on a business trip Dawnie experienced pain in her side and went to urgent care. Thinking it was a kidney stone, or infection she was give antibiotics. After returning home the pain continues, Dawnie decided to see her Dr and was immediately sent to the ER. Dawnie calls her husband, Scott letting him know she was going for tests and when she returns home they can decorate the house for Christmas. She walked over to ER thinking they’ll run some tests, give her some medicine and she’ll go home and be fine, but no that was not to be, she was admitted immediately. What was the best advice Dawnie received during her journey? What did she do when uncomfortable with her treatment option? Find out the answers to these questions and more.
What happens when you take two people out of their comfort zone and turn the tables? Special guest Dawn Kamber, Public Affairs Director and Host of “Impact OC” is usually on the other side of the mic. Dawn interviews guests who impact Orange County in a positive way. We turned the tables when we asked Dawn to share her journey with pancreatic cancer which started with a simple media release. Even being in the media, like most, Dawn had never heard of pancreatic cancer until she heard Michael Landon had been diagnosed. Why aren’t we hearing more about the disease before reading it in the obituary? What do we need to do to get and keep pancreatic cancer in the media forefront and not just when a celebrity is involved? Why does someone who doesn’t have a personal connection with pancreatic cancer become involved? Answers to these questions and more.
DR. MELISSA ROWLAND-GOLDSMITH
How many of us can say "I know what I want to be when I grow up?" Dr Rowland-Goldsmith knew exactly wanted she wanted to be at a very young age. She was horrified to hear a couple of girls make fun and laugh at a classmate when her wig fell off while changing for P.E. You see this little girl and been diagnosed with leukemia and lost her hair during chemotherapy. This event affected Melissa profoundly and she knew then she would be a oncologist. Her path took a little detour but she still has a tremendous affect on those diagnosed with pancreatic cancer. Her journey with pancreatic cancer will help mold future Doctors and Researchers to communicate better with patients.
DR. MARCUS WELBY WHERE ARE YOU
Marcus Welby, M.D. was a medical drama show that aired from 1969 to 1976. Dr Welby was a family practitioner, with a great bedside manner, kind heart and made house calls! How do Doctors of today compare to the Dr Welby's of yesteryear?
Would you, or maybe the question is, could you run 52 marathons in one year? Who does that? That is one marathon every week! All of this while holding down a full-time job. Was it her love of running or something deeper and more personal?
How would you handle only knowing your father through stories from family and friends? Trent Luna, a freshman in high school shares his journey how at an incredibly young age he went to Washington, DC, to share his story with Members of Congress; attended PurpleLight a yearly ceremony bringing those affected by pancreatic cancer together; walked in PurpleStride Orange County the walk to end pancreatic cancer, all to advocate for the father that was taken from him when he was only three and half months old.
Julia Tominaga shares her journey with her brother Curtis, “the kind of brother that always looked out for his sisters...almost like having a third parent.”
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Rick Pinson and his wife Linda became involved with PanCAN’s Orange County Affiliate in 2009 after Linda was diagnosed with pancreatic cancer. Rick shares his journey on why he still volunteers even after Linda's death in 2012. Rick remains actively involved and advocates in memory and in honor of Linda. Rick has been a leader serving as Advocacy Chair for the past 6 years and more recently accepted another role as PurpleStride Logistics Chair for the Orange County Affiliate.
Rosa's journey with pancreatic cancer began after learning her coworker’s wife was fighting this deadly disease. Instead of running away, Rosa ran towards Roberta and they soon became fast friends, “Besties.” During a PurpleLight in Orange County, a tribute to those affected by pancreatic cancer, Rosa, found out her Grandmother had died from pancreatic cancer. Rosa is open, honest and vulnerable as she takes you through her journey and why she became involved with the world’s toughest cancer. Though the journey can be hard at times, it is a way to give back and can be a joyous ride as well. Rosa’s journey may cause you to shed some tears, but it will also bring some laughter and hopefully will encourage you to get involved.
Vic Luna and his perspective on dealing his wife's Pancreatic Cancer.
Roberta Luna and her 19 year journey as a survivor (and counting).
Pamela Acosta Marquardt, founder of Pancreatic Cancer Action Network (PanCAN).