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Cancer survivor asks for funding, coverage

March 21, 2010 12:37 am


Rochelle Joseph went to Capitol Hill to ask for more research for colorectal cancer. She was diagnosed at 26. loRochelleJoseph2.jpg

Cancer survivor Rochelle Joseph snaps a photo of fellow C3: Colorectal Cancer Coalition member Regan Weaver.


WASHINGTON--After Rochelle Joseph celebrated her 10th year as a cancer survivor, she decided to speak out against the disease nobody wants to talk about.

She put on a gray-striped business suit, along with a blue T-shirt that read "Cover Your Butt," and headed to Capitol Hill.

With other members of C3: Colorectal Cancer Coalition, she sat down with legislators and their staff members Wednesday to tell people about the second leading cause of cancer deaths in America.

"I was diagnosed when I was 26," said Joseph, a former Stafford County resident who now lives in Upper Marlboro, Md.

When she got sick in 1999, many doctors considered colorectal cancer a disease of white males, 50 and over. "And I was none of those," Joseph said repeatedly, during five brief meetings in lawmakers' offices.

Joseph's tumor was advanced--a Stage 3 out of a possible Stage 4. She had four major surgeries and seven months of chemotherapy.

The drugs caused a side effect, toxic neuropathy, to settle in her legs. The young woman who had just finished her master's degree in urban planning ended up in a wheelchair.

Doctors told her she might never walk again, or that her movement would be limited. They warned she'd never enjoy the rigorous activity of others her age.

Joseph endured another eight months of physical therapy--and worked at it until she could walk again. She put her feet through quite a test on Wednesday, as she navigated the maze of buildings that are part of the U.S. Capitol complex.

"The pain, the sweat, whatever, thank God for it," Joseph said as she hoofed from one meeting to another. "It's 60-some degrees outside, the sun is shining, and I can walk up the hill again."

Joseph, 37, was among 55 representatives of C3: Colorectal Cancer Coalition who visited lawmakers this week. She made the rounds with Regan Weaver, a fellow activist from Annapolis who runs a mentoring program for children. In two years, three parents of the children she helps have died from colorectal cancer, and all were under 40.

Weaver detailed C3's wish list: that lawmakers would fund more research and require insurance companies to cover the cost of a colonos-copy, the test for early screening. Currently, it's recommended that African-Americans get tested at age 45 and everyone else at age 50.

But because the disease seems to be becoming more prominent among African-Americans, Weaver wondered if they should be screened at earlier ages.

Weaver also asked that money for colorectal research be more comparable to what's spent on breast cancer. Currently, breast cancer gets three times more funding.

"We probably never will have our ribbon flying from the White House," Weaver said, referring to the pink ribbons for breast cancer that were displayed from Pennsylvania Avenue to football stadiums.

"What's your color?" asked Amy Schultz, a senior legislative assistant in Rep. Steny Hoyer's office.

"Blue," Joseph answered.

"It probably should be brown, but that wouldn't fly," Weaver said.

Throughout the meetings, Weaver and Joseph dropped humorous lines, hoping to make it easier to talk about a topic that's unpleasant at best.

"No one wants to say the word, 'rectum,'" Joseph told one deputy chief of staff.

Being in the C3 group has made it easier for her to discuss the digestive issues that plagued her--and that she ignored for a while--because she thought there was no way she could have cancer.

Joseph took two days of training with C3 to learn the best ways to approach legislators.

"One person at our meeting said, 'It's not very often you get to talk about poop over drinks,'" Joseph said. "I think I've been saying it so much lately, it gets easier every time. I sometimes worry if I'm saying too much, and I'm offending people."

Most of the legislative aides Joseph met with thanked her for sharing her story. One asked about her current health, and another congratulated her for reaching the 10-year mark.

Another aide just nodded when she recited the details: that she moved back home to Stafford, with her parents Jim and Edna Bynum, so they could take care of her; that her father was diagnosed with a Stage 1 tumor three weeks after she was; and that her recovery process lasted about three years.

Joseph and Weaver also told the legislators they'd be glad to talk to other lawmakers who support early cancer screenings.

They noted that a routine colonoscopy costs about $1,400. The year Joseph needed chemotherapy, her medical bills totaled more than $300,000.

"Screening can save a lot of suffering and money," Weaver said. "If anybody needs help telling others that, we're not scared to walk around and talk about butts."

Cathy Dyson: 540/374-5425

FAMILY: She and husband Jaymar Joseph have an adopted 2-year-old daughter, Ryan.

PARENTS: Jim and Edna Bynum of Stafford County. Has one brother, John. DESCRIBES HER MOTHER, who does accounting for the City of Fredericksburg, as "a shining star." Edna Bynum took care of Rochelle, who came back home at 26 after she was diagnosed with colorectal cancer. Then Edna cared for her husband, who got the same diagnosis three weeks later. EDUCATION: Graduated from Spelman College, then got her master's in urban planning from Georgia Tech. CAREER: Recently resigned after seven years as a deputy zoning administrator in Washington to be a full-time mother and homemaker. May do some consulting work as an urban planner.

COLORECTAL CANCER is the third most commonly diagnosed cancer and second leading cause of cancer death in men and women.

IN 2006, 139,127 people were diagnosed and 53,196 died. WHAT'S THE DIFFERENCE between colon cancer and colorectal cancer? Tumors that form within inches of the rectum are defined as colorectal cancer; those elsewhere in the colon are colon cancer. SYMPTOMS: Changes in bowel habits, constipation or diarrhea, pain in the abdominal area and unexplained weight loss and fatigue. The biggest symptom, said survivor Rochelle Joseph, is no symptom. SCREENING is done by a colonoscopy. If growths, or polyps, are detected early, they can be removed before they turn into cancer. Doctors told Joseph her tumor grew for about 10 years. ON THE NET:

FightColorectalCancer .org Search for colorectal cancer.

Copyright 2014 The Free Lance-Star Publishing Company.