SURVIVING CANCER

  RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

In November 2011, Meg Paulsen had just begun dating the man who would become her husband when he discovered a lump in her breast. 

She had no family history of cancer and had her annual mammogram in May.

Fortunately, the cancer was “the slowest growing, least aggressive type.” 

Still, Paulsen, who was born with spina bifida, had four lumpectomies on one side, and one on the other.

 “My oncologist said, we’re probably going to be doing these continually because it seems like your tissue is creating precancerous stuff,” says Paulsen, now 56.

SURVIVING CANCER

   RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

Roy’s activism and open sharing about her cancer journey are her coping devices.

She suggests joining SCI/D groups on Facebook and other social media platforms and connecting with survivors and people fighting your specific cancer.

“Staying focused on the gratitude for all the beautiful people in my life, work I am passionate about, and the ability to advocate for improved safety of catheters [is also important].

If I can help someone else prevent bladder cancer, this journey has meaning,” she says.

 “Take friends and family with you to treatment when possible. 

Reconnecting with the people I love has been the silver lining of my bladder cancer diagnosis. 

Work on keeping a positive attitude. Take care of your mental health as well as your physical health.”

SURVIVING CANCER

 RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

While undergoing treatment, Roy has expanded her advocacy to educating people about catheters and bladder cancer. 

“People with spinal cord injuries that do intermittent catheterization get irritations and increased incidence of UTIs that put us at higher risk for cancer,” she says. 

“I catheterized with products that turned out to have a carcinogen in them.” 

She’s referring to Di(2-ethylhexyl)phthalate (DEHP), which is commonly used in plastics to make them flexible and requires a consumer warning label under Proposition 65 in California because it “can cause cancer and birth defects or other reproductive harm.”

SURVIVING CANCER

  RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

Roy has found her doctors uniformly respectful of her disability but wishes they were more proactive in considering unique risk factors and concerns for people with disabilities. 

“My one criticism would be that nobody is bringing ways to mitigate my known risk factors, which include the fact that I will continue to have to perform intermittent catheterization and likely continue to have recurrent urinary tract infections,” she says.

Roy has kept her spirits up during treatment by devoting her time to advocacy and education.

SURVIVING CANCER

 RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

Karen Roy is a brand ambassador for Numotion and a passionate advocate for wheelchair users and people with disabilities.

The 53-year-old uses a wheelchair as a result of a gunshot wound while being robbed 34 years ago. 

She was diagnosed with bladder cancer in the fall of 2021.

She caught her cancer in the early stages but faces a long treatment regimen. 

She travels more than four hours from her home in Baton Rouge, Louisiana, to Houston, for treatment at the University of Texas MD Anderson Cancer Center. 

Roy receives a version of the tuberculosis vaccine that is injected into the bladder to break through the cancer cells.

The treatments take two hours and are done every six weeks.

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SURVIVING CANCER

 RESOURCES FROM WHEELCHAIR USERS WHO ARE                    CURRENTLY BATTLING OR HAVE BEATEN CANCER

Karp, 67, advises those with SCI/D to plan on feeling foggy-headed even when out of a cancer center and recovering at home. 

He was not advised of the severity of pain he would feel or the impact of pain medications. 

For the first time in his life, he felt some insecurity about his ability to function at home.

“On the positive side, the nature of the disability experience is we are adaptive beings,” he says. 

“We learn to advocate for ourselves. 

That couldn’t be more important for someone going through cancer treatment. 

There are so many choices to make, so many individual paths, and so many products and strategies that each person has to keep learning.”