Caregivers in Their Own Words

Advocate. Note-taker. Cook. Shoulder to lean on. Caregivers for people facing pancreatic cancer fill many different roles. Although every person’s story is unique, there’s value in learning from others who have faced similar challenges. Here, volunteers from PanCAN’s Survivor and Caregiver Network share more about their experiences and things they’ve learned.

Brooke Schasteen-Smith: “Celebrate the small and the big wins”

Once when Rob Schasteen got good results on a blood test showing that his pancreatic cancer had not progressed -- his daughter, Brooke Schasteen-Smith, broke out the party hats. For other victories they share a meal at their favorite diner or have a piece of cake. It’s all part of a strategy to appreciate moments together. 

“Celebrate the small and the big wins,” she said. “That’s something I would say is critical for mental health. Take a minute to say, wow, we have been through so much together and my dad is fighting for his life. Let’s celebrate all that we can and especially that we are even able to celebrate together.” 

When Rob was first diagnosed, Brooke and her husband Kyle had just moved several states away. They immediately packed up and moved back. She’s been at her dad’s side ever since. She’s his primary care partner, a sounding board, personal note-taker, forceful enthusiast, co-decision maker, cheerleader and above all else his advocate.  

“The word ‘advocate’ is really important,” she said. “I’ve been in appointments where we’ve gotten news and we maybe didn’t receive it well or my dad needed someone to talk him through it. I would bring in my computer and take notes and ask a lot of questions because honestly, the entire experience can seem impossible. When everything feels too heavy or scary, talk to your care partner. My dad and I have made every decision together. We are truly a team.”

It’s been three years since Rob’s diagnosis. As a primary care partner, Brooke appreciates the people in her life who continue to show up in small ways. 

“One thing people can do is just honestly, genuinely ask how things are going,” she said. “Sometimes things might not always be good. It’s okay to simply listen to the care partner and not have to find a solution for them.” 

Both father and daughter now volunteer for the Survivor and Caregiver Network and they’ve made lasting connections. Her dad calls the people he speaks with his “team of survivors.” 

“With my dad’s original prognosis we were told he would live three to six months,” she said. “We wanted to know that someone has lived longer than that. And now we can share with others that my dad has lived longer than that original prognosis- that is my dad- he’s that person. I love that so much, that he can be that beacon of hope for someone else who just received this devastating, crushing diagnosis.” 

And when Brooke talks to caregivers, she reminds them to give themselves grace. 

“The feeling that you’re feeling, whether it’s desperation or exhaustion or you’re just terrified of what’s next – it’s okay to feel that way,” she said. “It means that you care. I want to make sure that other people know they aren’t alone in this pancreatic cancer journey.”

Brandi Jarrett: “We each had our spoke on the wheel.”

Brandi Jarrett grew up with a deep sense of family, shaped in part by the trucking business her parents built together. When her father, Tony, was diagnosed with pancreatic cancer in November 2022, that family bond only grew stronger, even as their roles began to shift.

“We each had our spoke on the wheel,” she said. “My brother’s responsibility was to keep the business going. My mom was my dad’s primary caregiver. I was the person doing the advocacy work. I asked a lot of questions and really leaned in.” 

The first time the Jarrett family met with Tony’s oncologist, they received a folder with information about PanCAN. 

“I dove right in,” Brandi said. “I called Patient Services and said, ‘Send me everything you have. I want every clinical trial within a 500-mile radius of Indiana.’” 

With determination and grit, Brandi cast a wide net—asking about clinical trials at cancer centers across the country. In December 2023, she secured a spot for her father in a promising trial. Tony participated for four months before the cancer returned. He passed away on May 31, 2024.

The 18 months from diagnosis to his passing were incredibly challenging, but Brandi also found moments of connection and joy. She encourages other caregivers to hold on to those moments — and to lean on the people around them.

“I had a tribe of girlfriends who carried me when I couldn’t keep going,” she shared. “I made it through because of them and because of my family.”

Today, with the help of a therapist, Brandi is working through the emotions that come with loss.

“You can’t go around grief,” she said. “You have to walk through it.”

Through her involvement with PanCAN’s Survivor and Caregiver Network, Brandi is using her experience to support others — helping them become advocates for their loved ones, just as she did for her father.

“Everyone’s story is unique, but there’s always something we can learn from each other,” she said. “The key is to turn that passion into purpose.”

Caryn Weinberg: “Caregivers Can Get Overlooked”

Caryn Weinberg remembers when her husband was diagnosed with pancreatic cancer nearly four years ago – with three teenagers at home life was a whirlwind. Not only was she thrust into the role of caregiver, she had to figure out how to manage her children’s emotions and expectations. 

Now, she draws on this time in her family’s life to help others. One important piece of advice: Take it day by day.

“I don’t think I was super rational at the beginning,” she said. “Obviously, you think the worst, but I was able to calm down. Having somebody that you can talk to, having a support network, that all helps.”

Thankfully her husband, Jeffrey, is doing well. She’s grateful that the cancer was caught early through his enrollment in a study for people with a family history of the disease. They found information on the study while attending a PanCAN PurpleStride event in honor of Jeffrey’s father, who died from pancreatic cancer. Jeffrey’s aunt also died from the disease, so he and several other family members entered the study and received regular scans.

“That study saved his life,” Caryn said. “Thanks to PanCAN the pancreatic cancer was discovered, and we’ve been big proponents of getting people who have strong family histories into a monitoring study.”

Her family’s journey has shaped her work with the Survivor and Caregiver Network. She learned how important it is to find moments to recharge – one of many pieces of wisdom she passes along.  

“Do you have an outlet? Do you have a book club? Do you go to the gym? Something you do that gives you a routine and some sort of joy,” she said, “because otherwise it’s hard.”

Ultimately, it’s about making sure everyone has the support they need.

“It’s a balancing act because you are not the patient, you are not the sick one, but everything falls on you. Caregivers can get overlooked. This is my way of giving back to show caregivers they’re not forgotten.”