In the first moments after Lori Marx-Rubiner was diagnosed with breast cancer last year, several fears ran through her head. The Jewish community social worker, who was 35 at the time, wondered about her mortality and worried about the prospect of pain and nausea induced by treatment. However, her deepest concern centered on her then 3-year-old son, Zachary.
Telling her son about her illness was "by far the most difficult thing I've ever had to do in my life," Marx-Rubiner said. In the five days between undergoing a biopsy and receiving the results, Marx-Rubiner and her attorney husband of 15 years, John, agonized over how to appropriately share such news with their son.
After fruitless searches for age-appropriate books, Marx-Rubiner finally found one that described cancer as a weed growing out of control. Because her son had been spending a lot of time in the garden, she seized on the metaphor to explain her illness and the ways her doctors planned to get rid of it.
"I told him it would take time, but as a family, we were all going to try and get me healthy. And his dad had the good sense to explain that cancer isn't contagious," she said.
The candid, hopeful tone that Marx-Rubiner took is exactly the approach that mental health professionals recommend. "The more information children have, the less frightened they're going to be," said Sally Weber, director of community programs at Jewish Family Service of Los Angeles and a licensed clinical social worker.
For example, Weber said it's natural for children to worry about a parent dying, but parents are often hesitant to discuss the topic.
"Saying [scary] words doesn't mean they'll happen," Weber said, noting that parents can respond to the child's concern by saying something like, "I'm not planning on dying."
"You can be very positive with your children even if you're feeling very frightened," Weber said. "You can say, 'Sometimes this scares me, but I'm doing everything I can to get well.'"
From diagnosis through treatment and beyond, communication is crucial not only with children but between spouses as well.
"In families, we all cope differently with crisis and trauma," Weber said.
Couples have to recognize one another's communication styles and develop their own approach as a couple before the family can cope in a healthy way. For the Marx-Rubiners, "our roles were reversed immediately," the wife said. "All of a sudden, I was the one who needed to be cared for, and I needed to accept that, which was a challenge."
At the same time, she continued, "the spouse is supposed to be strong and supportive and become the caretaker and deal with their issues by themselves.... The challenge for me was to help my husband find ways to communicate with me and to know that he didn't have to protect me from his fears and anger."
One of the places where the family explored these issues was at The Safe Spot, a one-day camp program for Jewish families with children, where a parent is afflicted with cancer. As a follow-up to this program -- which was founded by Weber; Rabbi Ed Feinstein, of Valley Beth Shalom in Encino; and Carol Koransky, senior vice-president of policy, planning and community development for The Jewish Federation of Greater Los Angeles -- a series of evening workshops for parents with cancer will be offered next year.
When cancer occurs, "all that used to be normal feels like it's ended," Weber said. Routines are disrupted. Housekeeping, cooking and other care-giving responsibilities are shifted. The family structure changes. "Now there's a new normal, and ... families learn to adjust to the new normal," she said.
For Marx-Rubiner, that meant hiring a nanny to do light housekeeping, pick her son up from preschool, prepare his dinner and give him a bath. Marx-Rubiner also looked for ways to stay connected with her son, even when she wasn't feeling well, for example, by inviting Zach to crawl into bed and watch a movie with her.
"And he had a lot more daddy time, which was a real blessing," Marx-Rubiner added.
While there's a tendency to focus on the patient, "cancer metastasizes to everybody in the family," said Valley Beth Shalom's Feinstein, who has battled colon cancer twice. In fact, he said, cancer's impact reaches far beyond the immediate family.
"I watched this ripple effect go through the whole community around me, my wife, my kids, my parents, my brothers, my friends, my kids' friends and their parents," Feinstein said. "It shakes everyone's sense that the world is safe."
For both Feinstein and Marx-Rubiner, community support was crucial. Parents from the Adat Ari El Early Childhood Center, where Marx-Rubiner's son attended preschool, coordinated a schedule to provide daily meals for her family. Others drove her son to school, took him to Tot Shabbat services and invited him over for dinner.
Her husband took her to treatments in the morning, but friends would drive her home and stay with her until the nanny arrived.
"That's God at work as far as I'm concerned," she said.
Feinstein also received "tremendous love and support" from his community.
"It's important for the community to take responsibility ... and to recognize that it's not just the patient, it's everybody in the family [who needs support]," he said.
Looking back on their experiences, both Feinstein and Marx-Rubiner found that cancer brought unexpected gifts.
"[My family has] a keen appreciation for each day," Marx-Rubiner said. "We take nothing for granted. I'm able to recognize that a piece of grass or a weed growing in a concrete block is a
"I gave up the idea that I have to be invulnerable," Feinstein said. "I gave up being Superman. I realized I have to share my agony and my struggles with my family."
Both Marx-Rubiner and Feinstein mentioned gaining a stronger spiritual connection.
"The things I believed in before in an abstract way, I believe in now from a much deeper place," Feinstein said.
"I don't struggle with God anymore," Marx-Rubiner noted.
Feinstein's advice to those dealing with cancer:
"Don't give up. Even if you only have a little time left, you have time to do what's important and to live big in the time you've got. If you don't surrender, you will leave behind a legacy to your children of living with courage and light and humor and wisdom -- and that's why we're here."
"I think there are tremendous blessings in all this," Marx-Rubiner stressed.
Despite all the challenges she's faced, Marx-Rubiner is quite adamant about her experience with cancer: "I wouldn't give it back."
For a list of resources designed for families dealing with cancer, call Jewish Family Service, (323) 761-8800, ext. 1255 .