Monica loses both 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 made was to let nature take its course. Monica being a researcher googled pancreatic cancer and found a chat group. After reading a few stories posted by family members, 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 the PanCAN Albuquerque, New Mexico Affiliate in 2012 after attending her first PurpleLight. Monica always loved to volunteer, pancreatic cancer ended up choosing her mother and that lead her into the direction of volunteering with PanCAN. Monica is the Social Media Chair of the Michigan Affiliate and has also served as the Advocacy Chair. The first thing she tells people she meets who have been diagnosed or their family members is to contact PanCAN. "I'd let them know there is hope not to give up, different things going." Monica feels going to Advocacy Day and sharing your stories with members of congress is very empowering. It's important our representative know "My mother was just not a statistic, she was not a number she was a real person." Monica was completely blindsided when she found out her dad was diagnosed with pancreatic cancer some years later. Her father had seen what his wife and gone through so he was a little more aware and his was found earlier. His symptoms were different, jaundice, itchy skin, he was able to have the whipple but sadly died less than a year later. Monica hasn't really come to terms yet in losing her father, she is still mourning her mother. Losing both parents to pancreatic cancer Monica is more involved and invested in the fight against pancreatic cancer. Quoting one of her favorite researcher, Dr Howard Crawford "It can be bent." Monica's goal is to raise as much awareness, keep her mothers legacy alive, "I don't want her to ever be forgotten and she won't be forgotten through me or the work that I do."
This episode of Living Hope is dedicated to Monica's mother Ranjana Upadhyaya "MAA"
You can reach Monica through the affiliate facebook https://www.facebook.com/groups/2095769850634842
or email firstname.lastname@example.org
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 diagnoses? Hear the answers to these questions and others, only on OC Talk Radio, Orange County's only community radio station live streamed from UCI Beall Applied Innovation Center.
Tori Larrick, Patient Service Manager with the Pancreatic Cancer Action Network guides us through clinical trials, what to expect and why clinical trial participation is safe. Tori encourages anyone considering clinical trials to feel comfortable with reaching out to Patient Services and asking questions. The first step is to feel free to contact PanCAN Patient Services. They're happy to talk through any fears or concerns before making a decision.
You can reach out to them on the website pancan.org, call 877-2-PANCAN or email email@example.com
Clarification on what is the Institutional Review Board: An IRB consists of at least five members of varying and diverse backgrounds. IRB members should have 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.
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 here on OC Talk Radio Orange County’s only community radio station streaming live from UCI Beall Applied Innovation at the Cove
Tori Larrick, is a Manager ll, Patient Services with the Pancreatic Cancer Action Network. 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, here @OC Talk Radio Orange County’s only community radio station streaming live from @UCI Beall Applied Innovation at the Cove.
“As long as you speak my name I shall live forever.”
Today’s Living Hope is dedicated to Tori’s father TIM LARRICK
COLLEEN LA SALLE
Colleen LaSalle shares her journey with her husband, John, diagnosed with stage lV pancreatic cancer. John was put in a clinical trial and told with chemo he would have 3 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 her 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, mother, caregiver, volunteer, 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 "he was here, he was important, he will always be important."
This episode of Living Hope is dedicated to John LaSalle.
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 a little emotional for me but really brought the importance of clinical trials to a different meaning.
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, laughter, the understanding we weren't alone. In 2022, we look forward to hearing from you. Sharing your journey, 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 that shared their journey, that watched or listened to Living Hope, 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. If you'd like to share your journey or have ideas for future episodes please email me at firstname.lastname@example.org or email@example.com
is a Pancreatic Cancer Action Network #PatientChampion, a licensed clinical social worker at UC Irvine Health working in the Comprehensive Digestive Disease Center (CDDC). Courtney provides supportive counseling and resource connection to patients with IBD, colorectal disease, and liver and pancreas diseases and cancer.
The holidays for most are usually a time of joy, family gatherings and making lasting memories. This "wonderful time of the year," can also be very stressful for pancreatic cancer patients and their Caregivers. We had the opportunity to talk with Courtney Sparkuhl, about dealing with stress during the holidays. Courtney, is a licensed clinical social worker at UC Irvine Health working in the Comprehensive Digestive Disease Center (CDDC). Courtney provides supportive counseling and resource connection to patients with IBD, colorectal disease, and liver and pancreas diseases and cancer. Courtney is also a Pancreatic Cancer Action Network PatientChampion. A Patient Champion is a healthcare professional who shares PanCAN's resources with pancreatic cancer patients.
Courtney shared some great information click on "Resources"
Nikki was an oncology nurse practitioner for 15 years in the Chicago area. Nikki relocated to Nevada and began volunteering with the 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 now position with PanCAN as a Case Manager with their Patient Services. Nikki connects with newly diagnosed patients and their families, provides them with information and resources allowing 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, 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 Patient Services and all the Case Managers. They play an important role in the patient and caregivers journey.
Karen Mooney, a Board-Certified Registered Nurse with more than 12 years of inpatient oncology experience at an acute care hospital, shared her passion for not only assisting with the cancer patients journey but also to the caregivers journey as well. On OC Talk Radio Orange County’s only Community Radio Station which streams live from UCI Beall Applied Innovation at the Cove
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 anger and frustrated and wanted, needed to do something. Chris was on the road for 9 months, bringing awareness to the streets and small towns all the 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, they discover 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 relationship with their pervious spouses, their loss, how they found each other and their common passion to help others and how they keep fighting the world's toughest cancer in honor of their spouses.
Only on OC Talk Radio, Orange County’s Only Community Radio Station which streams live from @UCI Beall Applied Innovation Center
This episode is dedicated to Sally Reitler and Chuck Mattei
Vice President, Stewardship & Partnerships - Pancreatic Cancer Action Network
Jenny Isaacson was attending a conference when she heard Julie Fleshman, President and CEO of The Pancreatic Cancer Action Network, speak about her vision of progress to double the survival rate for pancreatic cancer 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 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? Only on OC Talk Radio, Orange County’s Only Community Radio Station which streams live from @UCI Beall Applied Innovation Center www.livinghopepc.com www.pancan.org #WPCD
This episode of Living Hope is dedicated to Brenda Coleman a 13 year pancreatic cancer survivor at the time of her death.
“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 the family members and patient seeking treatment. The Founder of Hirshberg was impressed and Sarah has been a member of the Hirshberg team for ten years. This year is LA Cancer Challenges 24th annual event and the event always takes place on last weekend of October. The event is fun and festive with costumes, events for kids, trick or treat wall, a little something for everyone and 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
In Celebration of Survivor Esther Lee
Why is the month of November so important for those affected by pancreatic cancer?
November is important for those affected by pancreatic cancer in that 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 celebrated on the third Thursday of November. This year it falls on November 18 #WPCD a day to nationally recognize pancreatic cancer, bring awareness by wearing purple, decorate home/office take a photo and post on social media. Please use the following hashtags and post on social media.
#WPCD #pancreaticcanceroc #PancreaticCancer #DemandBetter
PurpleLight is an event to recognize those that have died from pancreatic cancer and honor those who have fought and are still fighting. Names are read, Luminaire bags, garden rocks with names positive thoughts, breaking a glow stick are some ways loved ones are acknowledged. This year is a little different in that it will be a virtual event.
"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 PanCAN Advocacy Day in 2010, leading JB to continue to fight in Tyler's memory and becoming a volunteer with the Orange County Affiliate. JB has only been Affiliate Chair for 3 months and with the core leadership group has devoted many hours planning the goals for FY 2022. Besides supporting PanCAN's goals the OC Affiliate will hold monthly meetings giving updates about PanCAN, Affiliate updates, guest speakers and planning and supporting upcoming events. A main goal will be supporting our Survivors and Caregivers, maintain federal advocacy efforts, increase our social media presence and turn
Orange County Purple!
This episode of Living Hope is dedicated to Tyler Noesen.
Vic Luna, 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 worlds toughest cancer? Are you interested in volunteering or becoming a sponsor?
Find these answers and more here on Living Hope; Your Journey with Pancreatic Cancer livestreaming on www.octalkradio.biz Orange County’s only community radio station.
Chemotherapy is a difficult treatment to go through. As difficult as it was Dawnie found a way to not only help her get through it, but it helped her support group as well. Dawnie is also 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. Life has a way of moving on, Tyler, married the love of his life and JB went on to join the US Army and 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 and participate in PanCAN's National Advocacy Day. JB didn't know what to expect that day, but from that day on he continued the fight with 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. Taken from Tyler's Blog of Live "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," on octalkradio.net Orange County's only community radio station. Livestreamed from UCI Beall Applied Innovation at the Cove For more information on the Hirshberg Foundation for Pancreatic Cancer Research please go to www.pancreatic.org
PAMELA ACOSTA MARQUARDT
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 here on www.octalkradio.biz Orange County's only Community Radio Station livestreamed from UCI Beall Applied Innovation at the Cove
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