When The Thursday Group started in 1980 there was no breast cancer awareness month, Susan G. Komen wasn't yet a foundation, much less a global brand, and cancer was literally the C-word.
"I could not say that word. I spelled the word," said Rosemary Graves, a founding member of The Thursday Group, the first breast cancer support group in the state and one of the earliest in the country.
"I had three teenaged sons," said Graves, who was diagnosed for the first time when she was 41. "I was scared to death I wasn't going to live long enough to see them grow up."
On Saturday, a crowd of more than 7,000 is expected at the annual Susan G. Komen Race for the Cure. Pink-shirted survivors will walk proudly in a parade.
But when Graves was diagnosed, she had no way of knowing it wasn't an immediate death sentence.
"You didn't talk about it at all," said Doris Rosenbaum, who joined the group in 1982. "Isn't that ridiculous?"
But the stigma and embarrassment ran deep back in those days. If someone had a camera at Thursday Group picnic or seminar, promises had to be made that the picture wouldn't be shown outside of the group.
"People didn't want to be associated with breast cancer because they were afraid they would lose their job," she said. When one woman's image was mistakenly included in a television news segment, she was so upset that Rosenbaum and Graves drove to the station after the 6 p.m. news to make sure that it didn't appear again on the late night broadcast.
Back then, the stigma about breast cancer was palpable. Some people thought breast cancer was contagious. And it wasn't that people said anything to those with the disease, it was the silence that surrounded it that was disturbing. But it was something you could feel. The stares. The horror of the unknown.
"People just treated you differently," said Arlayne Francis, who joined the group in 1982. Francis, now 70, suspects that some of the taboo was that many viewed breasts as purely sexual.
But, mostly, she said people were just afraid of something they didn't know much about.
The Thursday Group didn't start out as a support group. The very first meeting — held on Thursday — was an informal one-time gathering to get a handful of survivors together to help a researcher learn more about how patients fared after leaving the hospital.
But, Graves said, "we realized right then and there that we truly needed each other."
So they started to meet each month. They would hear about a new breast cancer patient and visit her in the hospital and ask her to join them. Rosenbaum got such a visit from Graves. But she only came to the group after she was invited by a friend to "her secret meeting."
In the meetings there was a "show and tell" to reveal to a newcomer what a mastectomy scar really looked like, or where to get the best wig. There were talks about fears and everyday woes exchanged in the shorthand of fellow travelers on a treacherous road.
"We weren't there to tell women what doctor to go to or what treatment they were going to have. We were just there to hold their hands," said Graves, now 82.
Hands were held, sometimes as final breaths were drawn.
The women would help out in ways much as hospice does today, cooking and cleaning but mostly just being there.
With the motto of "come to receive, stay to give," the group evolved from a monthly meeting. There was a free survivor's luncheon to honor women who made it through treatment.
"We expected 30 women and 120 showed up," said Rosenbaum.
There were seminars, even a fashion show where a post-surgery Rosenbaum donned a swimsuit. The women helped other groups take hold. They started organizing seminars and conferences that drew hundreds.
Then they decided there was a need to make real changes.
Advocating for care
In the 1980s, most insurance companies only paid for diagnostic mammograms after a lump was found in the breast. That was often too late for effective treatment. Making insurance companies cover the cost of screening for all women just made sense, the group thought.
"We just made up our minds that we were going to get something done about it," said Rosenbaum.
The women started talking to anyone who would listen. Unfortunately, not everyone wanted to hear from them. One official they approached said, "You little ladies may as well go on back home, this isn't going to happen," Rosenbaum said. She remembers leaving that meeting annoyed.
The group continued to campaign, speaking to organizations such as women's clubs and Rotary groups. By the time they came before Kentucky legislators on the health and welfare committee they had a room packed with supporters wearing buttons that said "Stay abreast, support mammography."
"Of course, it passed," said Francis.
Fayette County Circuit Court Judge Ernesto Scorsone, who was a state senator at the time, filed the bill. Getting any legislation passed involving insurance companies is fairly difficult, he said.
But The Thursday Group created a network that cut across party lines and brought rural and big-city legislators to the same side.
And, Scorsone said, "the women gave very powerful testimony" about their own breast cancer stories.
"The most important job they did was to educate legislators about the problem," he said.
Soon after, the group was part of a national campaign to get federal funding for women who found out they had cancer through health department screenings, but didn't have money for treatment. They were charged with getting 30,000 letters sent to lawmakers. Some 100,000 were mailed.
All the while the monthly meetings chugged along and continue to this day.
There is always a potluck, as is the tradition. Sometimes there are guest speakers. Sometimes the women just talk. Monthly attendance can range from 15 to 40. About 130 people are on the mailing list for the newsletter, said Carolyn Durham, who joined about 11 years ago and is in charge of the newsletter.
"There are those who come and take what they need and they don't stay with us," said Durham. Considering the nature of the disease, which can recur, a certain percentage die.
When a longtime member recently died, phone lines all over Central Kentucky were buzzing. The group, as always, sent flowers.
The core group that was there at the beginning isn't as involved as it once was.
Francis started a group in Richmond when interstate construction made the nighttime traffic to Lexington treacherous for her. That splinter group recently had a conference that drew 120 women.
Some of the early members get together at least twice a year for lunch or see each other at meetings that meet during the day.
Graves, who doesn't drive much in the dark, said she is living proof that there is life after cancer. She's found a late-life passion for basket weaving after a second round of cancer about 15 years ago.
"Thank God there were people there" in The Thursday Group as she went through her second treatment, she said.
She talks now of being grateful for every day and the importance of sharing her gratitude so it can go on and be magnified on through others.
And, still the subtle crusader, if you are a woman and you talk to Graves for more than a few minutes you'll like get this question: "So, have you had a mammogram?"