On the outskirts of Tulsa, Oklahoma, Maggie Burns stands as a testament to resilience and advocacy within the kidney cancer community. A caregiver to her husband, Ron Stanton, Maggie is a proud member of the Cherokee Nation and a retired IT professional. Maggie’s life is a rich tapestry of experiences that span continents. Her story is particularly poignant, highlighting the unique challenges faced by veterans and underserved populations, including Native Americans, in accessing specialized care for kidney cancer. Through her advocacy work with KidneyCAN, Maggie gives voice to these communities, sharing her insights on the PACT Act and the importance of specialty care.
Advocacy in Action: The Power of Sharing Stories with Congress
Ron Stanton and Maggie Burns lead a family-filled, outdoor lifestyle in their Oklahoma community. They met through their mutual love of riding motorcycles and share enthusiam for sailing, gardening, and spending time with their seven children and 11 grandchildren.
Maggie recalls the moment that changed everything: Ron’s kidney cancer diagnosis. “I initially had a false sense of ‘cured,’ when the tumor was removed with ‘clear margins,'” she shares. This pivotal experience propelled her into advocacy, emphasizing the need for ongoing education about the nature of kidney cancer and its treatments.
Maggie now passionately believes in the power of storytelling for getting Congress to fund much-needed research. “The best way to help someone understand the medical challenges of kidney cancer is to put faces on the disease,” she says.
She continues, “Our representatives have the power to vote yea or nay on bills that address the research and goal of finding cures; they must see the challenges their constituents are facing, the struggles caused by lack of resources, and the costs of the medical treatments.”
By sharing personal stories with Congress, Maggie aims to secure a future where kidney cancer is no longer ignored but instead a priority demanding attention and resources, especially for our veterans. “We owe this to them,” she asserts.
Caregiver Insights: Navigating Treatment Side Effects
“There can be stages of battles, depending on the advancement of the cancer,” she explains. Her proactive approach to learning and advocating for Ron’s care is a testament to her dedication, as she emphasizes the importance of finding specialists and the value of community support.
“Being an advocate for your loved one is the best gift of care that you can give,” she advises. Maggie underscores the importance of education, support, and meticulous note-taking to manage the complexities of treatment side effects. Ron’s journey has included complications from side effects that led to a ruptured colon and ileostomy.
Finding specialty care is also essential. “Oklahoma has a lot of rural communities and specialists are frequently not available. We are blessed that there is a kidney cancer specialist in Tulsa. Too many smaller communities don’t have access to an oncologist that specializes in kidney cancer, and they can’t afford to travel to find one,” she says.
The Impact of Telehealth: Bridging the Gap in Kidney Cancer Care
“Telehealth can make the world a bit smaller, ensuring all patients are granted the ‘best practices’ treatments,” she observes, highlighting its potential to revolutionize access to expert kidney cancer care.
“There are a limited number of oncologists that specialize in kidney cancer. Telehealth can provide critical availability to those living in rural areas, and even for those living in larger urban areas that don’t have specialists available,” Maggie explains.
Addressing Healthcare Disparities: Rural and Native American Communities
“My husband is a Choctaw citizen, and I am a Cherokee citizen. Oklahoma has the largest Native American population in the lower 48 states. Most of the citizens of the various tribes rely solely on the Indian Health Services (IHS). While there is a great effort underway to build and expand the clinics and hospitals for the IHS, they are currently overwhelmed due to limited funds and the large number of patients they serve. This causes delays in care, even for cancer patients, who may have to wait to receive their treatments.”
She calls for urgent action to improve access to specialized care and reduce the waiting times for cancer treatments.
A Veteran’s Perspective
Maggie shares her concerns for the health of veterans exposed to such environments. “The more we learn about the burn pits and other toxins that our veterans have been exposed to, the more I am concerned for my stepson as well, as he served in Iraq,” she confides.
Maggie now advocates for the highest standard of care for all veterans, bringing attention to the PACT Act and its significance for patients like Ron, who deserve the highest standard of care after serving their country.
A Beacon of Hope: Finding Inspiration Amidst the Struggle
“It’s now been 5 years for Ron with stage IV kidney cancer, and there are more options of treatments than there was at the beginning. That’s progress, and that’s hope,” she shares.
Maggie’s journey with Ron has not been easy, but she draws courage from being informed.
“My best advice to new patients and caregivers? Ask questions. Don’t be intimidated, don’t be shy — ask your questions, and take notes. Notes are critical! I keep a notebook of everything: test results, drugs, side effects, overall health. I am starting my second 3-ring binder of Ron’s medical history,’ she says.
Maggie recommends that those facing a new diagnosis turn to the experts for guidance. Not just doctors, but also patients and caregivers that have been there, such as those found in SmartPatients forums or Facebook support groups. “You might be surprised how strong you can be,” she insists.
Maggie’s faith and the stories of others provide a wellspring of inspiration, driving her advocacy and support for the kidney cancer community.