This summer, Joey Robinow planned to take his family camping at Calaveras Big Trees State Park. But he’s not planning any trips for next summer.
That’s because he has advanced lung cancer. The prognosis is grim. For Robinow, next summer might not come.
A physician at Kaiser Permanente Vallejo Medical Center, Robinow, 43, has never smoked.
“Last Thanksgiving, he was short of breath,” recalls his wife, Alissa Robinow. “He took his own stethoscope and said, ‘This doesn’t sound good.’ We got an X-ray and his chest was filled with fluid.” A CAT scan soon detected the cancer.
“At first, it was disbelief,” says Robinow. “Even as physicians we’re taught [lung cancer] is very much a smoker’s disease, so it took a while for it to sink in.”
As part of the fight against the disease, the Robinows joined Lung Cancer Alliance (LCA), a national organization lobbying for more research dollars and education.
Lung cancer does not discriminate by gender or ethnicity. And in the Bay Area, several members of the LCA — like the Robinows — happen to be Jewish. Each of them cannot help but view their illness through a Jewish prism.
“When something like this happens to you, you have to seek out ways to cope with it,” says Sandy Phillips Britt of Alameda. “My father died [of lung cancer], then my brother. Now I’ve been diagnosed, and every time I turned back to Judaism.”
Britt, 48, is a lifelong Jewish community activist. Her career includes chairing the local women’s division of State of Israel Bonds, and serving as the regional executive director of the American Committee of Shaare Zedek Medical Center in Jerusalem.
Her Jewish affiliations helped Britt contend with the disease, now at stage four, the most severe category of lung cancer. A nonsmoker, she was misdiagnosed five years ago, when her cancer might have been quite curable. She has fought an uphill battle ever since her cancer diagnosis last year.
But she is not without her allies.
“My friends and family totally jumped into action,” says Britt, a member of Oakland’s Temple Sinai. “They immediately organized a coordinated system to bring me meals every week. [Former Temple Sinai Rabbi] Susan Singer wrote a healing service for me. All the clergy there have been totally wonderful.”
Serious illness like Britt’s often brings out the best in synagogue communities. In fact, the ancient Jewish tradition of bikkur cholim (visiting the sick) institutionalized a Jewish response to illness.
After her lung cancer diagnosis, Mimi Arfin experienced similar random acts of Jewish kindness. They came from congregants and clergy at Temple Beth Jacob in Redwood City, and from families and staff at Gideon Hausner Jewish Day School in Palo Alto, where her two daughters are students. One work colleague slipped a note on her behalf into the Western Wall in Jerusalem.
Like the Robinows, who have three boys, Arfin and her husband, Bob Rebitzer, face issues particular to young families. Knowing their children may lose a parent only adds to the agony.
“Our oldest has had a really tough time,” says Alissa Robinow. “We all got into therapy. Out main goal is to keep the kids’ lives as normal as possible. The oldest is having a bar mitzvah in December. He has concerns Daddy won’t be there.”
On the flip side, “having kids helps,” says Arfin. “It keeps me grounded. I need to be there for them. We’ve been very open with the kids. We told them at the beginning.”
Arfin, an attorney and South Bay native, never smoked either. But according to the cruel logic of lung cancer, nonsmokers are susceptible just like the two-pack-a-day crowd.
The death last March of Dana Reeve, widow of Christopher Reeve, brought the issue into stark relief: Here was a well known, national figure; a nonsmoker dying from lung cancer.
According to stats compiled by the LCA, as much as 60 percent of lung cancer patients either never smoked or had quit years before their diagnosis. Many of them are in the prime of life. For patients like Britt, Robinow and Arfin, their illness uncovered a dirty little secret about the disease: Though it is still the leading cause of cancer death, and only 15 percent of patients hit the five-year survival benchmark, lung cancer remains relatively under-funded and under-researched.
Out of California’s current 87 cent-per-pack cigarette tax, emphysema, lung cancer, asthma and tuberculosis research compete for a total 1.4 cents (that figure would rise with the passage in November of Prop. 86, a measure that increases the tobacco tax to $2.40 per pack).
According to the Lung Cancer Alliance, $1,829 is spent on research per lung cancer death. By comparison, breast cancer research receives $23,474 per death and prostate cancer $14,369.
Raymond Weisberg, a retired San Francisco physician, has worked with the American Cancer Society for years, and defends his organization’s approach to battling lung cancer and research funding levels.
“As of the July 2006, on the books and still going were 71 grants totaling $35 million,” he says. “The American Cancer Society runs a fairly large research funding program. This is all peer review research.”
Britt contends, however, that the public is not well educated about lung cancer. “There is so much ignorance out there,” she says, “and the stigma of smoking has prejudiced the community. The fact that I didn’t smoke worked against me. A lot of pulmonologists have a prejudice against patients with lung cancer.”
That’s because so many assume lung cancer patients must have been smokers, therefore they brought the disease upon themselves.
“I certainly had a lot of ‘Why me? Why do I have to get this?'” says Robinow. “It doesn’t make a lot of sense. But the logical person in me says there is no reason. Rare things happen. There’s nothing I could have done differently that would have prevented this.”
The American Cancer Society and the American Lung Association “have been tremendous obstacles for patients,” charges Britt. “All they focus on is smoking and cessation, and nothing on research. They tell the big lie that if you stop smoking your lungs will go back to normal. It’s not true. You’re always at risk.”
Weisberg counters: “Lung cancer is primarily a disease resulting from tobacco use. When you stop smoking, statistically over a period of time, your risk decreases and eventually comes back to a non-smoker. The emphasis on cessation is undertaken to try to help people who are smokers. When you smoke you have eight times the risk.”
Lori Hope was one of those at risk. The 52-year-old Oakland resident had quit smoking almost 20 years before her 2002 lung cancer diagnosis.
“I tried quitting so many times,” she says of her former 15-year habit. “I worked a high-stress job. I take personal responsibility, yet I was an addict. It was very difficult, but I quit with the help of [nicotine] gum, and support of friends and family.”
Hope was lucky. Doctors detected her cancer early, by accident, while examining a CAT scan for an unrelated ailment. Her cancer was in stage one, and operable. She has been cancer-free ever since her surgery, but not out of the woods entirely.
“You may be back on your feet,” she says, “but emotionally, psychically and spiritually the healing can take much longer. I tried to integrate the cancer experience in my life, but it was difficult. Where does it fit? Who am I now? Am I the same person I was? How can I use this experience to help other people, to grow, to give it some meaning?”
In her quest for answers, Hope joined the LCA and wrote a book, “Help Me Live: 20 Things People With Cancer Want You To Know.” She became an active lecturer/motivational speaker on the subject, and has a Web site: www. lorihope.com.
She, too, turned to the Jewish community for support.
“It meant everything to me to know I was held in people’s thoughts and prayers,” she says of the congregants at Temple Israel in Alameda, her former synagogue. “I could feel the love. I got so many cards and gifts. It buoyed my spirit.”
Hope says her spiritual life deepened after getting sick. “My concept of God is love,” she adds. “Having cancer strengthened my belief in love as the power and source of healing, as opposed to curing.”
To that end, she worked for a time with the Bay Area Jewish Healing Center as a development and communications manager.
The healing center has long offered spiritual solace for Jews suffering from illness, including cancer patients. Rabbi Eric Weiss says when patients come to the center, he offers a range of responses depending on each person’s spiritual needs.
“That might include going to the mikvah after chemotherapy or radiation,” he says. “There may be ways of observance of Shabbat and other holidays, so [patients] get respite from the disease. It creates that healthy spiritual boundary.”
Britt, Hope, Robinow and Arfin agree the key to surviving the stress of cancer is maintaining as normal a life as possible. To whatever extent possible, this may mean sustaining Jewish rituals, returning to work and enjoying family time.
“I have experienced the patient side more than I ever wanted,” says Robinow, who has returned part-time to his Vallejo medical practice. “I spend more time listening. [The disease] gives you a sense of what it means to be a patient and how difficult it is to go through that.”
Adds his wife, Alissa, “The first months are devastating. But once past that there’s lightness, humor and joy in very simple things: watching your kids, going camping. There are many blessings, many angels, in our lives as a result of this.”
For Arfin, the stress of chemotherapy and other cancer treatments precluded a return to work, at least for now.
“That’s one of the hardest things,” she says of having to give up her career as a mediation attorney. “I wanted to be part of solving problems, and I found [the work] very satisfying. It was a great field. I still hope to do a little.”
Despite the rigors of chemotherapy, she remains as active as possible, traveling, hiking and biking with her family. The whole gang even entered a bicycling fundraiser for the Lance Armstrong Foundation (a cancer research advocacy organization), dubbing their team “The Lung Cancer Tumornators.”
Though the specter of dying young hangs over them all, the lung cancer patients do their best to defy it.
“Everybody’s alive until their last breath,” says Weiss. “We’re filled with hope and possibility. In that context, people make all kinds of choices. It’s important to continue to build celebration of family. That’s a spiritual matter: How do I celebrate life?”
People find their own way. “I lead the strangest life,” says Britt. “It’s not normal to walk around
knowing your number’s up soon. I run the gamut of emotions. It’s a process you go through. I’m still clinging to life.”
Joey Robinow does what he can to keep his mood upbeat. “I can’t just wallow in the bad outcomes potentially awaiting me,” he says. “I just need to keep my head up. I’m a believer in acting on the things you can change.”
“It’s not ‘if,’ it’s ‘when,'” says his wife, Alissa. “I don’t go there. Inwardly we know, [the cancer is] progressing. We don’t know what next year will bring. It really sucks.”
As for Mimi Arfin, no matter what stage her cancer may be, she intends to enjoy herself at this stage of life. Though now wrapping up a punishing round of chemotherapy, she’s already planning more family fun.
“I’m trying to figure out what our next adventure will be,” she says. “We go to Chicago for Thanksgiving, and we may go kayaking in Hawaii.”
How can someone so full of life be struck so cruelly? It’s a question Arfin, like the others, doesn’t bother with. There just isn’t time.
“Why me?” she asks rhetorically, “I don’t really dwell on that. I’ve been dealt my cards, so all I want to do is figure out how to deal with it and help my family though this.”