Living Hope

How does a purple journal help a young girl deal with her dads cancer diagnosis?

A family friend gave 14 year old Tori a purple journey to help her cope with her feelings after learning her father had been diagnosed with pancreatic cancer.  Ironically at that time neither realized purple is the awareness color for pancreatic cancer.  Tori felt her journal offered her a safe place to write about her journey and also used this journal not only to write about her feelings but to also keep track of her dads symptoms, treatments, medications, test results, anything to do with his journey.  Hear how this teenage girl helped co-facilitate a support group for other teenagers who had lost their parent and how her experience led her to where she is today.  Only on OC Talk Radio, Orange County's only community radio station live streamed from UCI Beall Applied Innovation Center.  

PS We’re Back!

PS We're Back!  PanCAN Orange County Affiliate JB Jaso, joins us and we talk about PurpleStride Orange County!  Last time we had an in person PurpleStride was in 2019.  We're so excited to be back!  We talk about the route, the new way to do the Path of Heroes and how you can get involved!

This episode of Living Hope is dedicated to all those who helped put Orange County PurpleStride together:  JB, Vic Luna, Rosa and Juan Velasco, Ross Swartz, Rick Pinson, Colleen LaSalle, Madison, Julia, Silvia, Stephannie, Angels staff, Media sponsor OC Talk Radio, Paul Roberts, Le Grand Marketing, Sprouts

JB surprised me with a dedication to my 20th year survivor-versary!

What to do when someone dies

In this episode of Living Hope we continue our conversation we started on March 24.  What to do when a loved one dies?  This is a subject no one wants to talk about but at some point it's information that can be helpful.  If we can all set down and talk about what we want when we die it would be so helpful for those left behind.  What is a  Advanced Health Care Directive? Is one needed?  Who needs to be notified? What kind of service should we have?  Would a check list be beneficial? These are some of the topics we talked about. It can be a heavy subject but we did have some laughs along the way.  

"As long as you speak my name, I shall live forever"

This episode is dedicated to Lupe Romero, "Inhale life to the fullest"

 

Will you know what to do when a loved ones dies?

At the time of this episode, Courtney Sparkuhl was a licensed clinical social worker at UC Irvine Health. Courtney has sense left UC Irvine Health to start her own private practice, "Counseling for Cancer and Chronic Illness"

Is death the last taboo topic in America? It's a difficult conversation but one we all should have.  This topic is not meant to take away hope or pose a negativity but to provide the resources when the time comes.  We talk about what we should do.  What to do first, telling friends and family and so much more. 

@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.”

This episode of Living Hope is dedicated to

Greg Willard

 

A young woman experiences the role of Caregiver in two different ways.

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 she got home from work.  While others took care of her physical needs, Stephannie, which is just as important, took care of her emotional needs. Whether it was reading her stories, telling jokes, or modeling, Stephannie and her grandmother shared a very special time.

Stephannie, not yet over the loss of her beloved grandmother, finds herself dealing once again with a loved ones diagnosis of pancreatic cancer.  This time it is her mother-in-law, a woman she loves and respects.  Obviously, this woman feels the same way, she asks Stephannie 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 Caregiver, sometimes upsetting other family members.  Watch/listen as Stephannie shares her experience as a Caregiver in different capacities. @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.”

This episode of Living Hope is dedicated to

Viola Galvan and Trang Huyng

 

 

How excruciating back pain lead to a diagnosis of pancreatic cancer

Lisa had excruciating back pain but related it to the fact she was a runner.  She went to the Dr and because she was also having digestive issues and just didn't feel "right." It was decided she would also get an appointment with a GI Dr.  Xray on her back didn't show anything so she tried pain management while trying to make an appointment with her gastrologist.  Due to COVID she wasn't able to get an appointment right away.  During her ultrasound she looked up at the screen and saw nothing but her pancreas.  She had a horrible feeling and she 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 Dr 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 that waiting time felt like an eternity. Getting the news from a resident was a horrible experience.  She hadn't heard from her gastrologist and felt left trying to figure out what she was going to do at that point.  Her relationship with her Dr was filled with mistrust.   Things started to look up when her company provided her with information about a group called Pinnacle Care.  They help people who receive a devastating  diagnoses and helps manage the medical world.  Lisa openly talks about chemotherapy, trying to re learn your body again in regards to eating and taking the enzymes. Her family and friends were a great support during this time, support came from people she never met.  Trying to live life with a new normalcy.  3 things -Don't google! Reach out to PanCAN Patient Services for great resources; understand your treatment, do not be afraid to ask your Dr over and over again why are you doing this; you have to believe you are in that 11%, you have to have that mindset that says "I'm in that 11% and never let go of that, never let anyone tell you, you are not. This episode of Living Hope is dedicated to fellow pancreatic cancer survivor Jenna James.

How losing her parents lead her to volunteering

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

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.

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.

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