Living Hope
How losing her parents lead her to volunteering

How losing her parents lead her to volunteering

March 26, 2022

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 mmishra@pancanvolunteer.org

What to expect and why clinical trial participation is safe

What to expect and why clinical trial participation is safe

February 22, 2022

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 patientservices@pancan.org

This episode of Living Hope is dedicated to our Caregivers.  Caregivers are important to the Survivor's journey.  We thank our Caregivers and want you to know you are not alone, we are here for you.  Regardless of where you are as a Caregiver you can reach out and speak with a Patient Service Case Manager and also ask to be connected with another Caregiver to share experiences.

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.

Clinical Trials are important to survival but there are also barriers that prevent some from participating.

Clinical Trials are important to survival but there are also barriers that prevent some from participating.

February 12, 2022

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

The importance of Clinical Trials and myths debunked.

The importance of Clinical Trials and myths debunked.

February 4, 2022

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

 

A wife shares her journey with her husband’s diagnosis and the difficulties of being a Caregiver

A wife shares her journey with her husband’s diagnosis and the difficulties of being a Caregiver

February 3, 2022

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.

The Year in Review Looking forward to what’s to come

The Year in Review Looking forward to what’s to come

February 3, 2022

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  livinghopepc@outlook.com or paul.roberts@octalkradio.net

 Thank you for being part of our 2021 journey and to future journeys!

The holidays aren’t always the most wonderful time of the year for patients and their Caregiver.

The holidays aren’t always the most wonderful time of the year for patients and their Caregiver.

January 28, 2022

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. 

How a journey begins with a family members diagnosis, to volunteer to Case Manager

How a journey begins with a family members diagnosis, to volunteer to Case Manager

January 26, 2022

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.

How far would you go to bring awareness to the world’s toughest cancer?

How far would you go to bring awareness to the world’s toughest cancer?

January 22, 2022

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 traveled one mile for every person diagnosed with pancreatic cancer that year.  Chris shares he "got a little crazy," in 2010, was angry 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.

What annual event happens on Halloween!

What annual event happens on Halloween!

December 17, 2021

Sunday, October 31, 2021 marked the 24th annual "L.A. Cancer Challenge." Due to the pandemic, last years event was virtual but this year the Hirshberg Foundation was excited to be back in person and on UCLA's Campus at Wilson Plaza. The 5K walk/run is always held on Halloween weekend, a fun festive event that leads up to November - Pancreatic Cancer Awareness Month.

Dr Zhaoping Li, served as Honorary Medical Chair.  Esther Lee, a one year+ Survivor was the Honorary Starter.

Congratulations! LA Cancer Challenge surpassed their goal of $500K by raising almost $530K!

 

 

  

 

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