Long Journey to ‘Rainbow of Hope’

When Marie Eckess woke up in the hospital recovery room, a nurse bending over her bed asked, “Why aren’t you crying? Don’t you know what they have done to you?”

Even today, 25 years later, Eckess remembers thinking, “What a fearsome thing for her to say.”

Then 42, the Newport Beach woman had just undergone a modified radical mastectomy, a five-hour operation in which one of her breasts was removed. Eckess already had given permission for the surgery if the biopsy showed there was cancer, and she had adjusted to the possibility that she might awaken without a breast. But she couldn’t understand why the nurse, someone who might have been expected to comfort her, would express so much fear.

Lying in her hospital bed that day, Eckess vowed to write a book that would serve as a source of hope and encouragement to other women faced with breast cancer.

Within six weeks of her operation, she began interviewing other Orange County breast cancer survivors who volunteered to share their feelings and experiences. With Eckess’ tape recorder running, the women talked frankly about their feelings when cancer was discovered, their surgery, their thoughts on their caregivers, the adjustments they had to make in their lives after mastectomy--and the reactions of friends and family members.

The interviews are the heart of Eckess’ book, available at long last, more than two decades after she taped them.

“Rainbow of Hope: Seventy Women and Their Journey With Breast Cancer” (WinePress Publishing; $15.95) includes current information on risk factors, mammograms, selecting the right doctors, and the American Cancer Society’s three-step early-detection guidelines. There’s also a glossary of medical terms.

The Intimate Story of ‘Families Changed’

Eckess, who paid to have her book published by the independent Christian publishing house in Mukilteo, Wash., said all proceeds from the book’s sale will be used to grant scholarships to children whose mothers have died of breast cancer.

But hers is not a medical book, Eckess emphasizes. It is, she says, the intimate story of “families changed forever by breast cancer.”

Recruited through local newspaper articles, with their names forwarded to Eckess via the Orange County chapter of the American Cancer Society, the women spanned the ages of 27 to 79. The time between their mastectomies and their interviews with Eckess ranged from six weeks to 22 years.

The women’s voices, along with those of 30 other family members, demonstrate the roller coaster of emotions that comes with breast cancer--a disease diagnosed in an estimated 118,700 U.S. women in 1998, according to the American Cancer Society.

The women held little back from Eckess.

On surgery and treatment: “I was scared to death. . . . When I found in the hospital that they found cancer and had to remove my breast, I was hysterical,” said Sarah, 44. “I was yelling and screaming at the surgeon, and he had to close the door. . . . I was angry at the whole world.”

On their husbands’ reactions: “My husband . . . is very kind and is accepting it beautifully,” said Denise, 57. “There is no sex problem as a result of surgery. I was afraid to show him my scar, but he was very kind and nice. I looked at his face and he accepted it. That made me feel much better.”

On acceptance and adjustment: “Even though cancer is devastating and the operation is devastating, I’m just very grateful that I can live a normal life,” said Daisy, 62.

Encouragement is the essence of the book.

“Don’t give up. There is hope,” said Eckess, now 67, who has a doctorate in education and was assistant director the Huntington Beach Union High School District’s adult school at the time of her mastectomy.

Early Detections Remains Critical

But “Rainbow of Hope” also sounds a strong cautionary note.

“The whole thrust of it is early detection,” she said. “It’s the only thing we have today. There hasn’t been that much advancement: Mastectomies are still being performed today. Women are still dying of [breast cancer], although not as many, because of early detection.”

Added Eckess, whose own experience with breast cancer is included in the book: “We 70 women plead with women today to care enough about yourself to do three things: monthly breast self-examinations, a yearly clinical examination and a yearly mammogram.”

But are 25-year-old interviews with breast cancer survivors valid today?

Leslie Harrah, regional development director of the American Cancer Society in Pittsburgh, acknowledged that breast cancer treatments have changed dramatically, “and cure rates and chances of survival are so much better today than 25 years ago.”

But, she said, “I don’t think the feelings and concerns--the psychological issues of worrying about dying, worrying about the breast cancer coming back and worrying about sexuality issues--will ever go away. Those emotional issues are still there, so anything that can help a patient feel empathy with the writer of those stories, I think, can be helpful. It’s something that validates your own feelings.”

American Cancer Society volunteer Kathy Bates of Fountain Valley, who had a bilateral mastectomy in 1995 and has read “Rainbow of Hope,” agreed.

While reading the women’s recollections of their treatments, Bates wondered briefly why she should bother reading about outmoded treatments. “But, to me, the important part of the book is when it talks about the emotional and psychological aspects of their cancer treatments. That part, I felt, was really very good.”

Something else has changed since 1974, Bates said.

“Several of the women in the book alluded to the fact that they wished they could talk to women who had been through the [breast] cancer experience, and now that’s very easy to do because there are so many support groups,” said Bates, 57, a member of the Embracing Life support group at Fountain Valley Regional Hospital and Medical Center.

As for Eckess, Bates said: “The fact that she’s a 25-year survivor gives us a lot of hope.”

Eckess never intended for more than two decades to pass before seeing her book in print. But six months into the project, she says, it just became too painful to continue. After transcribing the taped interviews and beginning to write the book, she made follow-up calls to see how the women were doing--only to learn that five of them had died.

“To hear these women were dying just saddened me so much, because I cared about them,” she said. “They had come to my home--the same home I’m in now--and shared their innermost feelings and showed me their mastectomies, and they came because they said they wanted to help other women.”

Not wanting to inflict further pain on the women’s families and on herself--”I grieved the loss of these women, and I still grieve their loss”--Eckess set her tapes, notes and manuscript aside, storing them in a box on a shelf in her closet.

In the intervening years, she opened an antique shop in Costa Mesa, Moods and Memories, which she closed in 1995. She volunteered at--and later took over as director of--the Good Samaritan Food Ministry at South Coast Christian Church in Costa Mesa. And, in 1991, she started the nonprofit Emma Alberta School of English Literacy, named in honor of her mother.

(The school originally was housed in the second floor of her antique shop, then at South Coast Christian Church. Now she teaches a handful of students out of her home.)

Sometimes while cleaning, Eckess would get out the box and tell herself, “Let’s get back to the book.” But she’d begin to cry when she listened to their voices. There was, she said, a lot of laughter on the tapes. And tears.

“One woman said, ‘I’ve cried for the first time in eight years with you, and I don’t know why.’ I know why: because I was listening to her, and I put my arms around her. During the interview process, I was comforting people as much as anything. One woman said, ‘I wish I could accept it as well as you have.’ ”

When Eckess survived a double brain aneurysm in 1995, she made up her mind to complete the book. “I recognized even more . . . how brief life is, and I didn’t want to leave this earth without keeping my word to these precious women.

“They had such hope in their hearts. And you can’t help but admire the bravery,” she said.

One volunteer, who died a week before her interview appointment, wanted so much to be part of the book that she told her husband to speak to Eckess himself. Although many of the women were in their 50s and 60s and may have since died of natural causes, Eckess has no idea how many of the women remain, like her, breast cancer survivors.

“I long to know if any of them have survived,” she said. “Even if we had all died, the book would be there to leave something of us behind, a word of encouragement to other women saying, ‘Don’t give up.’ ”

For information about “Rainbow of Hope,” call Marie Eckess at the Emma Alberta School at (949) 631-2047 or write to her at 1048 Irvine Ave., No. 438, Newport Beach, 92660.