Patti Goodall & Family, 1991. Photo by Arthur Stephens Photography.
It all began while watching the Today Show from a hospital bed. It is 1991, Patti Goodall is a 38-year-old mother with 3 and 5-year-old children at home. She has been admitted to the hospital for complications from her first chemo session.
To pass the time, she is flipping through the TV channels and lands on the Today Show. Someone talking about breast cancer catches her attention. Elenore Pred, co-founder of Breast Cancer Action is on television.
Pred had been diagnosed with breast cancer in 1981. She had a recurrence in 1988 and was angry that in all those years, there had not been any progress in how the disease was being treated. She was also angry at the increasing number of young women being diagnosed with and dying from breast cancer. She was planning a protest rally for Mother’s Day in San Francisco, CA. After Patti got home from the hospital, she called information, got Pred’s number, and gave her a call.
Patti has a support group meeting coming up the next week. She is one of their newest members. She had been reluctant to join the group thinking that it would be a “touchy-feely” experience, something that didn’t suit her. Sherry Kohlenberg, another young mother with breast cancer, convinced her to go. What she found was a group of women who were very informed.
“It was not a bunch of women sitting around whining. They were very knowledgeable. They were reading [scientific] journal articles. They were talking about their ability to have children after breast cancer. They were talking about genetics;” remembered Goodall. “I thought ‘Wow, these women are on top of things!’”
Patti decided to pitch the idea of hosting a rally to the group. “She was red-faced and angry, saying that there’s not enough money for breast cancer research; we need to protest, too. Let’s do a Mother’s Day rally!” recalled Mary Jo Kahn, a fellow support group member.
“We thought, ‘We can do this. We can start something like this in Virginia to raise awareness, to demand more money for research and to be the voice for Virginia women affected by breast cancer!’” said Goodall.
Every member of the support group agreed. They had two months to plan. They lined up speakers. There was a notice in the paper. They recruited their children to make signs. About 50 people showed up for the rally. Doctors and nurses were there. A reporter was there.
“Our children had made some posters that were on the front page of the next day’s newspaper. As a result of the rally, The Richmond Times-Dispatch did a whole story on the current state of breast cancer and our nascent organization’s efforts to eradicate it. We had met our first goal: to raise awareness.” said Kahn.
The rally ignited a spark in five of the support group members. Patti Goodall, Sherry Kohlenberg, Mary Jo Ellis Kahn, Judi Ellis and Phoebe Antrim decided to form VBCF.
“After the rally was over, the five of us knew we had another goal yet to meet. We needed to make sure enough research money was available not just to make progress on breast cancer, but enough actually to eradicate the disease. Most of us had young children. What we were fighting for was prevention.” said Kahn.
Mary Jo Ellis Kahn is no stranger to breast cancer. Her mother was diagnosed with breast cancer at age 39 and died of it eight years later. In 1989, when Mary Jo was 39, she found her own breast cancer. While she was in the hospital undergoing a mastectomy, her sister, Judi Ellis, was diagnosed. She was 41. This led two more of their sisters to have prophylactic mastectomies in their mid-30’s.
Mary Jo remembered, “When my mother was diagnosed in the 60’s, the words breast and cancer were almost never said in public and people whispered them in private. Twenty years later, some things had changed. Cancer could be discussed in the open, even breasts could be, but breast cancer was still whispered as if it were something embarrassing to have. Meanwhile, the lifetime risk of having the disease had risen steadily from 1 in 20 when my mother was diagnosed to 1 in 9 when my sister and I were diagnosed in 1989. Even with this startling rise in incidence, there was no press coverage; there was no public outcry, there was no special outlay of research money to combat this disease. Breast cancer was a silent epidemic.”
This was about to change in a big way.
There was a perfect storm of angry women building energy across the United States. Rallies and small breast cancer groups were popping up across the country.
While planning for Virginia’s State Capitol Rally, Patti kept in touch with Elenor Pred in California. VBCF’s five founders even took an impromptu road trip to meet her when the opportunity arose.
“One night, Patti, Mary Jo, Sherry Kohlenberg, Phoebe Antrim and I got in the car and drove to Charlottesville. Elenor Pred was there visiting her grandchildren. She was a real ‘in your face’ activist,” laughed Judi Ellis.
The group learned that Pred was planning a meeting in Washington, DC for these groups. Mary Jo rearranged her schedule so that she could be there to represent the newly formed but still unnamed VBCF.
She and her 12-year-old daughter, Michelle, took the train to the meeting and began an unbelievable journey. They were joined by women from Arizona, Boston, Vermont, San Diego and elsewhere. During this meeting, Mary Jo took a step back and looked around her.
“Separately, but simultaneously, there were strong, intelligent, articulate women from all over America saying, ‘enough is enough’. It was a true grassroots movement, not lead from the top down, but by the unified determination of many. At that moment, I realized we were an unstoppable force and we would succeed,” recalled Kahn.
Next Elenor’s band of activists headed to the National Cancer Institute to meet with its director and department heads. There they were stonewalled. Elenor kept interrupting to say they should be listening rather than talking. The director insisted that $30 million dollars was more than enough money and that the women should be satisfied with the progress they were making.
The next day they met with a hundred other breast cancer groups to explore joining together into a coalition with a goal of securing more funds for breast cancer research. Mary Jo introduced herself as being from Richmond, VA representing a group to be named later.
“We may not have settled on a name yet, but we knew we would be part of this coalition. To eradicate breast cancer, it was going to take Virginia and 49 other states.”
After returning to Richmond, Mary Jo organized a meeting at her house. There a group of about 20 named their new organization – the Virginia Breast Cancer Foundation. They decided to be a statewide organization and set to work to become a nonprofit organization. Mary Jo became VBCF’s first president.
VBCF volunteered to be a part of the working group that later became the Board of Directors of the National Breast Cancer Coalition (NBCC). We still hold a position on their board today. We took what we had learned about organizing advocates here in Virginia, and became the first chair of NBCC’s Grassroots Taskforce. We helped other states host their own rallies, form telephone trees, and recruit membership.
One of the first projects of the taskforce was the Do the Write Thing Campaign. The goal was to collect 175,000 letters to be delivered to Congress and the President, one letter for each projected breast cancer diagnosis in 1991. Virginia’s number was 4,200.
VBCF ended up collecting tens of thousands of letters. Nationally, over 600,000 letters were collected. Over 175,000 letters were addressed to President George Bush.
VBCF transported the letters on a bus chartered to bring our advocates to Washington, DC. A press conference was held on the steps of the Capitol, where participants read excerpts of the personal letters. The boxes of letters were then loaded on carts and delivered to their respective representative’s office, proving to Congress that we were a force to be reckoned with.
That year, the votes in Congress for breast cancer research money went down to the wire. There were a few Senators who were in tough races for re-election in 1992 and were courting the women’s vote. At the last moment, these Senators reversed their no votes. When the other Senators, who had voted no, realized the bill was going to pass, they rushed back to change their votes to yes—the vote was overwhelmingly in our favor! We won our fight – $300 million more dollars for breast cancer research.
Sherry Kohlenberg pictured with her husband, Larry Goldman, and their son Sam before her diagnosis.
On April 24, 1990, Sherry Kohlenberg was in the shower thinking about a conversation she had with a friend a few days before. The friend had lost her mother and grandmother to breast cancer. She told Sherry that the only elective surgery she would consider was prophylactic (preventative) mastectomy.
With a sinking feeling, Sherry felt a hard lump under her arm. Once out of the shower, she had her husband, Larry Goldman, feel it too. She called her doctor and set-up an appointment for that day.
Two doctors examined her and asked if she had noticed any changes in her breast scar tissue – she had a benign excisional breast biopsy ten years before. Her doctors thought it was larger than at her last exam in November 1989.
That same day she went for a mammogram and met with a surgeon. Larry joined her.
The radiologist and surgeon found the lumps to be suspicious and performed a fine needle aspiration. Ten minutes later, the surgeon returned and told the couple to sit down. It was breast cancer – in both the lymph node and in the breast.
“I couldn’t believe it, I was sitting in a tiny exam room and someone was telling me I had cancer. My husband and I held each other. He was brave, I cried,” recalled Kohlenberg to Virginia Woman magazine.
Sherry was only 34 and had a young son at home.
Sherry decided to enter an experimental study where she got high-dose chemotherapy before surgery. Her doctor told her that there was a 50:50 chance that she wouldn’t ovulate again after chemo. She and her husband had wanted a large family.
The night before her second treatment her hair fell out. She would spend the four days following each chemo treatment feeling tired and sick. Friends and family took turns staying with the family during Sherry’s rounds of chemo.
Through everything, Sherry’s biggest concern was for her son. The couple struggled to explain what was happening in two-year-old terms. On the night before treatments, she would explain that she would be sick for a few days, but then get better.
Sherry was convinced that once she had her mastectomy, her cancer would be gone. She could feel the tumors in her breast and under her arm were shrinking as a result of the chemotherapy.
Two weeks after her last chemo treatment she had a modified radical mastectomy. When the pathology report came back it showed breast cancer with positive lymph nodes. Sherry was devastated. She and her medical team decided on another six months of chemotherapy.
Sherry finished her second round of chemo in February 1991. She had her bone marrow harvested and frozen so that she could receive an autologous (her own) bone marrow transplant should the cancer return. At the time, the treatment had proven promising for some women with recurrent breast cancer.
On the national front in 1992, Bill Clinton’s presidential election campaign was in full swing. Health care reform was a major platform issue. He had a particular interest in breast cancer – his mother had the disease.
In Virginia, VBCF continued to grow. On October 15, 1992, VBCF facilitated a meeting with the Clinton campaign and the National Breast Cancer Coalition (NBCC) in Williamsburg, VA. Bill Clinton was scheduled to attend but had laryngitis and had to save his voice for a debate that night in Richmond, VA. Hillary Clinton attended in his place.
NBCC chartered a bus from Washington, DC to the meeting in Williamsburg. The bus broke down en route. These women were determined and hitchhiked the rest of the way.
Sherry Kohlenberg went to the meeting after being released from the hospital that morning. Her cancer had returned and she had undergone a bone marrow transplant. She arrived at the meeting wearing a surgical mask and presented Clinton with a photo of herself, prior to her diagnosis, before launching into her story.
When Clinton’s aides called time for the meeting, Mrs. Clinton refused to leave until she heard from everyone in the room.
In November 1992, Bill Clinton was elected President of the United States.
In January 1993, the Clinton’s highlighted “Faces of Hope” during the inauguration – people that impacted them on the campaign trail. Sherry was chosen, and she and her family attended.
In May 1993, Sherry gave a keynote speech at a national Mother’s Day Rally hosted by NBCC in Washington, DC.
“This year 46,000 women will die of breast cancer. I will probably be among those statistics. I will leave behind my husband and partner of 18 years, a motherless child, a devastated family and too many friends. I will not get to watch my son grow up or grow old with my husband.”
“Enough is enough,” she said. “We can no longer keep silent. We must continue to demand adequate research funding to discover the causes, prevention, and cure for breast cancer. We must demand a better future for our children.”
“Breast cancer is stealing my life, but I will not go silently. I will go shouting into that dark night: Enough is enough!”
Sherry passed away on July 14, 1993, at age 37.
Sherry understood the power of her own story. She very much wanted her death to have meaning in the fight against breast cancer. As a co-founder of VBCF, Sherry empowered others to speak out. She took advantage of every opportunity to advocate for increases in breast cancer research. Before her death, Sherry completed a children’s book, Sammy’s Mommy Has Cancer, to help other families explain cancer to their young children. It was published less than four months after her death. Her book won the “Best Book of 1994” award from the American Medical Writers Association.
Sherry said that she was comforted to know that she was leaving the voices of so many behind to demand a cure.
It is for Sherry, and for every other person that has gone too soon from this disease, that VBCF continues to fight to improve the lives of families facing breast cancer and to demand nothing less than prevention and a cure for this disease.