By Michaela L. Duckett
– September 13, 2011
One day while visiting with her cancer-stricken mother in a Florida hospital, Carin Ross Johnson says her mom confided that she wanted to be used by God in any way He saw fit to help others.
“I will never forget when she told me that,” recalled Johnson, a Charlotte banking executive. At the time, her mother was battling endometrial cancer - a form of gynecologic cancer.
“I left crying and really upset,” Johnson said, “because I know what that means when you ask God to use you. That means He can do anything. He can take you.”
Lydia G. Ross Johnson’s mother, Lydia G. Ross, died on June 20, 2010. She was 62 years old and had worked as director of pharmacy at a Florida medical center.
In honor of her mother, Johnson founded Lydia’s Legacy, a nonprofit to support programs for awareness, research and a cure for gynecologic cancer, on Mother’s Day 2011.
“My mission is really simple,” Johnson said in a recent interview with Qcitymetro.com. “It’s about awareness, research for a cure and visibility.”
This past Sunday, Johnson hosted the first annual Lydia’s Legacy Teal Tea Party and Silent Auction. The purpose was to not only raise awareness but money as well.
At least $2,000 was raised from the silent auction alone. Proceeds will go to Carolinas Healthcare Foundation and Lineberger Comprehensive Cancer Center for Local and Regional Research.
Equally important, Johnson said, is to improve the screening techniques for the various forms of gynecological cancer.
Early detection can lead to more effective treatment, but of all the gynecologic cancers, only cervical cancer has an effective screening test. For other forms, such as ovarian cancer, by the time the disease is detected, it is often too late.
“Cancer truly is a monster,” Johnson wrote on her blog. “But with early action and education and money for a cure, we can make a difference.”
Since Ross died last year, thousands of dollars have been donated in her honor to the National Foundation for Woman’s Cancer.
Each one Teach one
Earlier this year, Lydia’s Legacy collaborated with officials at Carolinas Medical Center’s Blumenthal Cancer Center to host workshops for women and the significant people in their lives. The purpose was to promote awareness by giving them the information they need to recognize the signs of gynecologic cancer and know when to seek treatment.
Imana Legette, who described Johnson as her "best friend in the whole wide world” attended those workshops and said she learned valuable, life-changing lessons.
She said that one of the presenting physicians, Dr. James B. Hall, shared an analogy relating to women who get pap smears and leave their doctor's office thinking all must be well. According to Legette, this is what Hall said:
“When you go in for your pap smear, it’s a false sense of security. You think ‘oh, I’ve had my pap smear and it came back normal so I’m good.’ But think of your body as a light bulb. The pap smear just gets the big bulb part. That’s about it. It doesn’t get down to the small twist-on part where most of cancers are.”
Legette said, “That one little snippet of information has stuck with me. He said there is no test that you can take (for most gynecological cancers) that will tell you where you are, what your chances are or what stage you are in. How do you fight something like that?”
Get on the Bus
On Sunday, November 6, the Lydia’s Legacy Dream Team and a group of supporters, survivors and advocates will take a bus to Washington, D.C., to participate in the second annual National Race to End Women's Cancer.
Thanks in part to locally based organizations such as Lydia’s Legacy, Teal There’s a Cure and the Teal Diva, the “Teal Movement” is building momentum around the Qcity and gaining a great deal of support.
Mayor Anthony Foxx has proclaimed September 19 (Lydia’s birthday) as Charlotte Teal Day. The Duke Energy Building in uptown will light up teal for September, which is Teal Month.
Johnson says she hopes and prays that her mom would be pleased with her efforts and all of the people who have joined the fight.
Her father, Charles L. Ross Jr., certainly is and says his wife would be “extremely proud” of their daughter’s accomplishments.
“I think this legacy is going to help educate people in terms of what gynecologic cancer is,” said Ross. “It’s a very devastating disease. I have gone through it with my wife. Hopefully through education we can help somehow minimize (suffering), and hopefully in the future maybe there will be a cure for this disease.”
Teal, the other pink
The teal ribbon is the symbol of hope, support and a cure for gynecologic cancer.
Johnson vividly recalls the first time she bought her mother a teal-colored item. It was two years into her mother’s three-year battle with cancer. Johnson purchased a gynecologic cancer-awareness T-shirt that read, “I Fight like a Girl,” and a teal pendant inscribed with the words, “With God’s help we can cure.”
She packaged the gifts and had them delivered directly to her mother’s home in Florida.
“She called me crying hysterically,” Johnson recalled. “I thought that something was wrong. And it was just tears of joy from being able to finally have something that identified her disease.”
As a seasoned healthcare provider, Lydia Ross was extremely involved in advocating for health-related issues. She devoted much of her time to raising awareness about breast cancer and worked extensively with organizations such as Susan G. Komen for the Cure.
Ross once confided to her daughter that, at many of the events she had helped put together, breast cancer survivors would be acknowledged and asked to stand. But no one ever asked Ross to stand or acknowledged her battle.
“She just felt left out, isolated and alone,” says Johnson.
So when she received her daughter’s package with the T-shirt and teal pendant, she was overwhelmed with emotion.
“She was so happy that she finally had something of her own,” says Johnson.
Although she may have felt alone at times, Ross was aware that she was not alone in her struggle.
Each year more than 70,000 women are diagnosed with a form of gynecologic cancer. For many of them, the disease is not detected until it has advanced or is in its final stages. More than 20,000 die each year.
Johnson says that one her mother’s chief concerns was the lack of knowledge concerning gynecologic cancer.
Johnson says that by putting her energy into raising awareness, she is helping keep her mother’s legacy alive.
“I’m a Christian, and I believe in everlasting life,” she said. “I believe that Lydia’s Legacy is a way that my mom continues to live because she was so faithful.”
She said she still hears her mother’s voice guiding her.
“I kind of feel her a little bit on my shoulder,” Johnson said. “I just try to keep that at the basis of everything and not make it about me… It’s all about what her legacy was. It’s about the survivors and the people who are going through it now and the people that care for those people...and those that need to be educated so that we can prevent it from happening.”