Gwen Goodman was in a rush the day 25 years ago when her life changed. She was dashing off to a City Council meeting about funding for museum education programs when the phone call came.
Goodman heard the words no woman wants to hear. Her mammogram was abnormal.
In a fog of shock, she went off to that meeting. She didn't even call her husband until after she'd attended it. And as reality set in, Gwen Goodman began the life- altering experience of dealing with a breast-cancer diagnosis.
Today, Goodman — executive director/CEO of the National Museum of American Jewish History — looks back on that experience with a sense of profound gratitude. She is a survivor. She also knows that breast cancer forever changed her perspective; it taught her that she is a very fortunate woman whose husband, Alan, became her champion and her cheerleader. And breast cancer strengthened her in unexpected ways.
"Twenty-five years ago, breast cancer was a secret. It was whispered, never spoken. But I was determined not to take that approach," said Goodman. "I didn't feel that I had anything to hide, anything to be ashamed of. So I immediately told people."
She underwent rigorous treatment — treatment so disabling that it sometimes reduced her to despair. But she completed it.
Today, Goodman talks freely about the disease that now affects about one in seven women, as well as the medical advances that weren't even dreamed of years ago, though much remains to be done in terms of a cure. The issue does, however, get the spotlight during October, Breast-Cancer Awareness Month.
'This Is a War'
"You celebrate unusual anniversaries as a survivor. I remember the day I finished chemotherapy, when my husband took me in a limousine to New York to celebrate. We were crossing Park Avenue when we had to stop on the island in the street, and suddenly, I found myself weeping. I was just so frightened that now there was no treatment left … "
As it turns out, the sense of "what now?" is a very common reaction to the end of treatment, but all Goodman knew was that the future was a blank.
"I still remember how Alan put his arms around me and reminded me that we could die just crossing the street. And I still remember what he said next: 'This is a war, and we're winning it.' "
Another soldier in that war is, ironically, the woman who is Goodman's assistant. Anna Dorfner, the museum's executive administrator, got her diagnosis of breast cancer 15 years ago. In her case, it was almost as if she'd been waiting for the shoe to drop.
"My mother was one of four sisters — all of whom died of breast cancer," she said. "I was 14 when she died."
So Dorfner was diligent. She went for annual mammograms. And one year, out of the blue, with no symptoms and no palpable lump, there was the news that she had the disease.
"It wasn't really a question of whether, but when," said this upbeat woman, who occassionally feels guilty because her experience was a blip on the radar screen. "I didn't suffer like many women — I had a lumpectomy, I had radiation, and I'm living, walking proof that early detection can make a huge difference."
Dorfner never felt the "poor me" syndrome. What she felt, instead, was "lucky me."
"We live in an age when there are ways to diagnose this disease, and when we don't have to whisper the word 'cancer.' My comfort is when I go to my doctor, and I hear the words, 'You're fine.' They may not be fancy words, but they're all I need to hear."
Its name is its mission: "Living Beyond Breast Cancer" began in 1991 when Philadelphia-area physician Dr. Marisa Weiss saw the need to give breast-cancer survivors some comfort and ease as they adjusted to their diagnosis and treatment — and to their new status as survivors.
The need for information, connection and support was as urgent then as it is now, and LBBC has led the crusade to empower women affected by the disease to live as long and well as possible.
It's no small mission.
But LBBC, based in Ardmore, has risen to the challenge, and has grown into an international organization that serves more than 30,000 women and families around the world, reaching people at all stages of their diagnosis, treatment and recovery. Its embrace has enriched women in traditionally underserved populations. A Web site established in 1996 (www.lbbc.org) makes dissemination of information and resources more immediate.
'I Went to Have It Checked Out'
Seminars have been targeted to the growing number of young women who learn — through improved methods of detection and diagnosis, and a general heightened awareness — that they have the disease.
One such woman is an articulate and thoughtful local rebbetzin.
"Life was wonderful. My husband and I were settling into the area after a move from California, and I had just returned to my social-work career," said Rebecca Meyer Carr, the wife of Rabbi Kenneth Carr of Reform Congregation Or Ami in Lafayette Hill, and a mother of two.
That's when she was thrown by a diagnosis she never, ever expected: breast cancer at age 37.
Carr had been undeniably vigilant. Because two of her aunts had postmenopausal breast cancer, she had insisted on a mammogram before her 40th birthday. It was, she was told, fine.
But several months later, she discovered a breast lump. Still, she didn't panic: "It wasn't ominous. It wasn't perfectly hard, the way I'd been told malignant lumps are. But, of course, I went to have it checked out."
The doctor reassured his patient that it was probably nothing, but still sent her on to a surgical oncologist when what he thought was a cyst hadn't gone away. "I was given 95 percent odds that a biopsy would come back fine," recalled Carr. "But that's not the way it turned out."
She got the phone call telling her that she had breast cancer on a day when she was substitute teaching at the school of one of her kids. "I went into practical mode. I had to drive home without tears and without getting us into an accident."
As it turned out, Carr already had lymph-node involvement, and after a lumpectomy and during massive doses of chemotherapy, she met with a genetic counselor who traced her family tree on both sides. Carr would learn that her paternal great-grandmother had succumbed to a "female cancer," actually ovarian cancer, in her early 30s.
As congregants helped her through the treatment, Carr researched everything she could about her diagnosis. Chemotherapy was followed by radiation. Then a hysterectomy. Genetic counseling revealed to this young mother that she still had a 25 percent chance of another cancer.
This year, Carr chose to have a prophylactic double mastectomy, and feels confident that was best for her: "I didn't want to face a life of doubt and uncertainty, and because I had the kind of genetic mutation that could mean more cancer, I did what I felt was right for me."
She has also become a passionate educator: "I stress that mammograms may not be as effective as other diagnostic techniques, including MRIs, in picking up early cancers in premenopausal women, especially those with dense breasts. I speak to groups, including high school girls through a Hadassah program called 'Check It Out.' And I'm a help-line volunteer for Living Beyond Breast Cancer."
She has also experienced a sea change in perspective: "I don't put off important things. I don't delay important experiences. Our family went to Israel in the midst of all of this — and I'm thrilled that we did. I've learned that you get no guarantees, and that you'd better live every day of your life to the fullest."
That goal — living life to the fullest — is one of the motivating factors behind a brand-new breast-cancer program.
Yad B'Yad ("Hand in Hand") is a partnership between the Samost Jewish Family and Children's Service of Southern New Jersey and the Philadelphia Affiliate of the Susan G. Komen Breast Cancer Foundation. The concept is breathtakingly simple: Connect Jewish breast-cancer survivors with newly diagnosed patients in the region so that the process of guidance, support and vital information can take place.
The program came to fruition after a group of South Jersey survivors who'd networked through their local synagogues determined that they wanted to offer emotional support and information to their newly diagnosed sisters in the community. Impressed by their motivation and enthusiasm, the Philadelphia Komen affiliate — led by Elaine Grobman — and the professional social-work staff of the Samost JFCS forged a working partnership.
The social workers will provide training to the survivors, who, in turn, will work with the newly diagnosed patients in one-on-one conversations and support groups. The Komen Foundation — which serves 18,000 communities across the country, and funds education, screening and research around the world — will help provide the necessary funding to start Yad B'Yad.
"What makes this so exciting is not just the fact that this is a grass-roots program, but that we may be able to educate and prevent breast cancer by spreading the word that there is something Jewish women of Ashkenazi descent can do that may prevent a diagnosis," explained Jennifer Weiss, interim executive director of the Samost JFCS.
"Genetic testing is available for these women, and counseling and support options are available for those who test positive."
Concluded Weiss: "Knowledge is key in eradicating this disease, thus outreach to women in the community is vital."