“Most of your support groups are in a church organization, and I have never heard of anything on any website or any ad that doesn’t show them in church, so I’m like ‘You know what? I’m going to do something different,’” said Barb Brown, who then sipped from an orange to-go cup at Grayson Coffee House.
Grayson Coffee House is a quaint place, filled with the aromatic blend of Jittery Joe’s and the home-like smell of wooden furniture. Conveniently for Barb, the business includes a secluded side room where she has arranged to host the “Anchored in Hope” cancer support group on the first Saturday every month.
Anchor Church was the spot she originally intended to host the sessions, but after careful consideration, Barb decided against a religious space, hoping to include secular audiences so that anyone interested in learning more from her experience and drawing support from a group can participate.
A nurse by trade, Barb has been in retirement since 2014 when she was diagnosed with multiple myeloma — a cancer of the blood and bone marrow that is both chronic and uncurbable.
“I’ve already outlived the statistics,” said Barb, who was given a three-year life expectancy in 2014. She now sees it as her purpose to make herself available to others who are suffering and to offer support to family, caregivers, and friends.
Her insight comes after 23 years of battling cancer. Her first diagnosis was for breast cancer in 1996. Barb was a working nurse in Chicago at the time and held down two jobs while going through radiation. When the breast cancer returned in 2001, Barb underwent 30 radiation treatments and several of her ribs cracked in the process. But even that was nothing compared to what she goes through now, receiving chemotherapy at Emory University every month and enduring all the side effects that come with it.
“That was the beginning of a sequelae of pains and weaknesses,” Barb said with a smile. She insists on being transparent about what she goes through. “I want to get rid of people’s thought about ‘Don’t ask, don’t tell’, you know? That stress in itself is hard on people’s body. You can help someone else with what you’re going through,” she said.
Now, she’s coming full circle as a former nurse, patient and a potential mentor to others. From her history as both a professional and as a patient, Barb has learned that the best way to navigate cancer is by owning the disease, asking questions and always seeking new information. “That’s one of the big things with cancer patients. If you don’t ask, you don’t necessarily get what you need, and that’s sad,” she said.
Taking the prize for the most optimistic patient, Barb is ever hopeful that some ground-breaking method is on the verge of discovery. She tends to be the first to volunteer for clinical trials and research. “I feel like an Emory University guinea pig,” Barb laughed, admitting in the same breath that she’s “probably still alive because they’re not afraid to try new things.”
While she wouldn’t recommend the same route to everyone, Barb does urge others to seek the advice of social workers and experts. “[Social Workers] are your financial help, and I never knew that until I was diagnosed with multiple myeloma.”
And she’s found additional resources from her provider, Dr. Sagar Lonial, who happens to be the regional expert on multiple myeloma. Following his suggestion, Barb participated in compass trials with the Multiple Myeloma Research Foundation (MMRF), which assigned her a Nurse Navigator who calls every 90 days to check up on her. “You know what, it’s nice to have someone give a hoot about you and ask how you’re doing and make suggestions. So, that’s another thing that I want to be able to do with people,” she said.
Barb hopes that in time, a support network will emerge from Anchored in Hope. She hopes to see participants getting involved and forming a community; to see ride-sharing for those going to the same doctor; to see a swapping of tips and information and conversing about their experiences. “Hey, you know, it’s okay to call somebody else once in a while. Don’t expect your family always to be there for you because they’re stressed out too.”
The first meeting will be held on Saturday, September 7, 2019, at 3 p.m. Participants are welcome to grab a coffee, pull up a chair and contribute to a list of possible topics to discuss and research. Barb hopes it will be the start of many educative and revealing conversations to come.
“I want people to optimize their health and to never give up hope because there’s always new things being discovered around the corner. [Cancer] is a pathway in your life; it’s not like you’re going downhill. I’ve been through it three times now, and you can’t think of it as a death sentence. There so many people available and new treatments available. Don’t be afraid to ask. I want to be there to educate people.”
To get involved with Anchored in Hope, contact: firstname.lastname@example.org.