SURVIVING CANCER

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

The radiation treatment also affected Karp’s ability to swallow, necessitating that he get a feeding tube.

“My doctor was right up front about it, and I’m glad he was because I’d be dead without it,” he says. 

“I still primarily get my nutrition through a feeding tube even after the CAT scan shows I’ve beaten this.”

Other side effects impacted his taste buds, spurred massive weight loss and left him weakened — a difficult thing for someone who is “rabid about my independence.” 

Karp typically drives himself, but says there were times when he needed to get a ride to treatment.

SURVIVING CANCER

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

“I had to train the techs who did the radiation treatment on some really important fine points about the transfer. 

People don’t understand that when you don’t have use of your legs, you basically are balancing on your butt,” he says. 

“Being upright is critical. As soon as I land, I need to be upright. 

If not, I feel like I’m falling forward, and that’s panic mode.”

Despite all his precautions and training staff to switch him from side to side every two hours, Karp developed a pressure sore that took months to heal. 

He advises those with SCI to be hypervigilant about protecting their skin during treatments.

SURVIVING CANCER

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

An American Cancer Society public relations official confirmed that there are no guidelines for treating physicians or support groups specific to people with disabilities.

The side effects from Karp’s cancer treatments hit him hard and led to some feelings of insecurity.

Knowing this, Karp proactively set out to ensure the time he spent in the hospital and receiving treatments would be as safe and comfortable for him as possible. 

He made sure there was extra cushioning on the tables where he received radiation treatments, and later in the process, as he lost some physical strength, he requested assistance making a safe transfer because the table was several inches higher than his seat.

SURVIVING CANCER

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

Gary Karp has a long resume as an architect, emergency management planner, internationally recognized public speaker, corporate trainer and the author of three books. 

On the heels of completing 35 radiation treatments over seven weeks, he can add throat cancer survivor to that list.

While you might think writing Life on Wheels: The A-to-Z Guide to Living with Mobility Issues would have prepared Karp, a T12 para, for his battle with cancer, his experience reveals a more disheartening truth.

“I have come across no resources specific to cancer and being a wheelchair user,” he says.

“I have not encountered another person in the course of this experience who also is paralyzed. 

Cancer treatment providers just don’t have a lot of experience with it.”

SURVIVING CANCER

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

Cancer is an unforgiving opponent, and it definitely doesn’t pull any punches for wheelchair users. 

From early detection, to treatment, to recovery, wheelchair users face unique obstacles that can make an already difficult fight seem overwhelming.

Sadly, there’s no “easy button” to guarantee a quick and painless battle, but with the right preparation you can reduce the challenge and bolster your odds at a successful outcome. 

This serialized story shares tips, resources, humor and strategies from three wheelchair users who are currently battling or have beaten cancer.

ALL I WANT FOR INDEPENDENCE DAY

IS FREEDOM FROM ABLEISM

Ableism is vile, repugnant and a threat to people with disabilities.

It’s as insidious as racism

If you don’t know what it is, it’s basically nasty bigotry – but based on a person using a wheelchair instead of racism discriminating based on the color of skin.

I learned of a government department head emailing other department heads to warn that the "Americans with Disabilities Act office is on the warpath and picking on noncompliance."

The ADA protects basic civil/human rights.

Standing up for them is NOT on the warpath.

This mean-spirited and hateful alert sender serves hundreds of thousands of constituents.

Would he whine and push back on protecting civil rights based on race or gender?

Probably not.

So why are the human rights of people with disabilities constantly under attack?

RAINY NIGHT IN PARIS

ROUND ABOUT MIDNIGHT 

Winding down a 14-hour workday.

Lengthened by two hours of pre-dawn exercise.

Coming home to Art Nouveau splendor in 9th arrondissement.

The next day, a Universal Design roving workshop with the goal of visiting all 20 arrondissements, via walking no transit or car travel, within daylight hours of one day.