“No one can whistle a symphony. It takes a whole orchestra to play it.”
At Cancer Hope Network, we’re proud to be part of an “orchestra” of collaboration – working with community organizations and nonprofits to provide support for patients and caregivers around the nation. The Hope Helpers series highlights the work of some of these amazing allies.
Totes for groceries or suitcases for travel. Duffels for the gym and backpacks for hiking. A glittery clutch for a night on the town and even something to brew tea. The options are endless, with a bag for pretty much every need.
But if you’re facing cancer, there’s one bag that’s here to help: The Bag It bag. And if you’re looking for a Bag It bag, Mindy Griffith, Bag It’s Executive Director, is the person to know. We caught up with Mindy to talk about her own journey and the work Bag It is doing to empower patients and families.
Bag It is an Arizona-based nonprofit founded by Sherri Romanoski, a former kindergarten teacher and cancer survivor, with one goal: to fight the fear that comes with diagnosis. That mission continues to this day, working to “educate, support and empower those impacted by cancer.” The organization accomplishes this with two programs: the Bag It bag and ESCAPE to Thrive, an annual leadership conference for advocates and survivors.
Bag It began with newly-diagnosed patients in mind. The bag includes a printed binder of materials and resources to help patients and caregivers manage the information and paperwork that’s flooding them. The goal is simple, but strategic. “Bag It is a starting point,” Mindy says. “Ideally, people get it from their provider, close to the start of their diagnosis. It has a glossary of basic terms. It has printed versions of reliable cancer booklets and information. It includes key forms they may need.”
“Medical professionals tell us that the bag and the information it provides helps those with cancer to be more engaged in their treatment. Research tells us engaged patients experience better outcomes,” she continues. “We know the internet has tons of valuable resources. But there is SO MUCH. Bag It helps people to focus. We’re helping people have information at their fingertips. We’re providing tips to guide you along the way. The Bag It bag is providing information to empower them as they navigate this new language, this new world.”
The My Companion Guidebook is an elegantly simple solution: organizing the jumble of paper and information that accompanies a cancer fight – from logs to keep track of side effects and symptoms to forms to keep tabs on medications. There’s even a place to include personal copies of your tests and results. “Electronic medical records from different doctors don’t talk to each other. We’ve had patients tell us they got to an appointment with a new doctor, only to find out their records hadn’t yet arrived from their referring physician. Having a copy of their scans in their Bag It binder meant they could continue those appointments and didn’t have to reschedule.”
After a career in education, first as a teacher and then as a school administrator, Mindy is firm in her belief that “Knowledge is power. The more knowledge you have, the more you can advocate for yourself. You need not be afraid to speak up. You are the only one who can take care of you.”
She has found great fulfillment as she leads Bag It. For her, it’s personal. “My father and grandmother passed away from cancer. My mother is a cancer survivor.” She’s inspired by the stories of how Bag It has helped people. “We hear from a lot of caregivers who have used it. I had a patient tell me how helpful it was when he went to an appointment without his (caregiver) wife and had all the information he needed in his Bag It bag. It’s giving people a sense of knowledge and awareness.”
The organization recently celebrated its 15th anniversary. It was an opportunity to look at their successes and to map out their future. The group worked with an outside research company to interview medical providers, patients and caregivers who’d used the bag – and those who received the bag and didn’t end up using it. They focused on two questions: “What more can we do? How can we continue what we’re offering and be supportive for people at all phases of survivorship?”
The result is a renewed focus on empowering patients and families along the continuum of survivorship to be advocates for themselves. It’s taken the form of a redesigned bag, binder and the resource support that accompanies the program.
“As an educator, I know that everyone learns differently,” Mindy said. “We’ve included messages of hope and more information to help Bag It users feel confident in being their own advocates. We’ve streamlined the way we present some information, we’ve added more resources online, we’ve worked to incorporate different ways you can use the forms to make sure the information is accessible to a wide variety of people.”
When asked about the future, Mindy is proud. “I’m really excited about our new bag. The concept has always been phenomenal. The feeling you get from the new bag is incredible. It has a new level of hope, more content. It’s a great tool for both the survivor and the caregiver.”