Long Walk Back

After surviving two bouts of cancer as a teen, Bethesda's Jerry Sorkin thought he was in the clear. Then came the diagnosis that changed his life.



Lung cancer.

When Jerry Sorkin heard the diagnosis in August 2007, the 42-year-old Bethesda resident was stunned.

He’d been in good health since beating Hodgkin’s lymphoma twice as a teenager. After years without a relapse, he didn’t think much about it anymore. He and his wife, Lisa, were too busy raising 7-year-old Emma and 5-year-old Claire. And Sorkin was enjoying his job as an executive director at the Corporate Executive Board in Arlington, Va., where he helped companies grow.

But that June, he’d noticed some small blood specks when he coughed. His doctor treated him for a sinus infection, then suggested a CAT scan, given his history.

The scan showed nodules that lit up across his chest like “1,000 flowers blooming,” Sorkin says.

Additional testing revealed Stage IV lung cancer, which had a first-year survival rate of 2 percent or less. The same disease had killed his mother in 1992. Sorkin, a nonsmoker, was told that he had maybe a year to live.

“I was, fair to say, incoherent,” he says. “I’m in the middle of the night thinking I’m not going to be around. Not only am I not going to make it to Emma’s wedding, I’m not going to make it to her bat mitzvah. That is devastating.”

Four years later, Sorkin, now 46, is too busy to lie awake fearing for his future. Regular chemotherapy treatments have stabilized the cancer. He’s in good physical shape, although the treatments leave him feeling ill for a few days afterward, and he gets winded climbing a couple flights of stairs.

Since the diagnosis, he has spent lots of time with his family and has dedicated himself to raising awareness about lung cancer, the top cancer killer in the United States. About 150,000 Americans die annually from the disease.

That’s why he’ll be on the National Mall on Nov. 6, to launch Breathe Deep DC 2011, a 5K walk to raise money for lung cancer research. The event is sponsored by LUNGevity Foundation, a Chicago-based nonprofit that’s working to improve lung cancer survival rates.

Sorkin participated in a fundraising walk in Washington after his diagnosis and was buoyed by the support of lung cancer survivors. A year later, he learned that the event no longer existed. He was “dumbfounded and distraught” that there was nothing to participate in to celebrate his survival, he says. “I did not want to start my own thing. I just wanted to walk in somebody else’s walk. I did not set out to become an activist,” Sorkin says.

He got involved with LUNGevity in 2009 after researching organizations devoted to fighting lung cancer. He took charge of organizing the fundraising walk in 2009 because he believed the cause needed a national stage. Lisa came up with the name, Breathe Deep, which has been adopted by LUNGevity walks around the country. “I absolutely did not want it to be Jerry’s walk,” he says.

That first year, 1,200 people participated and the event raised $250,000. “It was one of the best days of my life,” recalls Sorkin, who now serves as vice chair of LUNGevity’s board of directors.

Hundreds of friends and relatives gathered at the Washington Monument and walked a route around the Mall. “It was like having 1,000 friends on Facebook and being in the same place all at one time. It was just an absolutely amazing day.”

 

Sorkin and other lung cancer  patients and survivors gathered to kick off last year’s Breathe Deep DC walk on the National Mall. Photo credit: LUNGevitySorkin and LUNGevity President Andrea Stern Ferris of Potomac hope for as many as 3,000 participants this year. They want the fight against lung cancer to achieve the same high profile as breast cancer’s Susan G. Komen Race for the Cure. “That’s the gold standard,” Sorkin says.

Ferris, a veteran businesswoman and former part-owner of an Arlington software company, came to LUNGevity after her family’s nonprofit, Protect Your Lungs, merged with the organization in 2010. Ferris, 43, founded Protect Your Lungs to help fund cancer research in honor of her mother, who died of lung cancer in 2008.

Like Sorkin, Ferris was bothered by the lack of attention paid to the disease. It strikes one in 14 Americans, according to LUNGevity. About 55 percent of those diagnosed never smoked or had quit smoking.

“It’s a jumbo jet every day of the year in the U.S. alone,” Ferris says. “That’s a lot of people.”  

For Sorkin, the annual walk provides both solace and hope—exactly what he needed after his diagnosis. “To me, that was as valuable as a half-million dollars raised [for] research,” he says.

Sorkin always wondered whether the blasts of radiation he received as a teenager to treat the Hodgkin’s might trigger a secondary malignancy. He’d never know for sure. But in any case, he didn’t think lung cancer. And he didn’t think anything would happen for a while.

When he received the diagnosis, Sorkin stopped working and went on long-term disability leave. Knowing that he could die within a year, he and his family decided to travel—to Disney World and Israel, among other places—between chemo treatments. He attended several Bruce Springsteen concerts, and a friend arranged for him to meet The Boss.

“We said, ‘Let’s go,’ and we did,” he says. “We did tons of things.”

Sorkin had adopted a similar attitude after his first cancer diagnosis at 16, when he was a high school junior in East Brunswick, N.J. With the invincibility of youth, he didn’t worry about surviving. “I was pretty confident I’d be able to beat it,” Sorkin says. “I didn’t feel that sick.”

Instead, he focused on what mattered to him—working on the high school newspaper and starting his own community news show on the local cable TV station—and let everything else slide. He took a cue from his mother, who had multiple sclerosis but never let it hold her back.

“Our familial response is to become hyper-involved and hyperactive,” Sorkin says. “As a result, I was a kid more involved in any activities than anyone else. My grades were lousy, but I did everything.”

Sorkin and Lisa met at age 13 during a school math contest. They were friends during high school, but didn’t date until both were out of college and living in Washington, D.C. Lisa teases Sorkin that the first cancer diagnosis led him to squander his mathematical talents.

“I stopped doing math, and very nearly failed trig and calculus,” he admits.

Three months of radiation put the disease into remission, and Sorkin went on with his life. In 1983, he headed to Yale University in New Haven, Conn., to major in economics and politics, and Lisa went to the University of Michigan. In January of Sorkin’s sophomore year, a routine checkup revealed that the Hodgkin’s lymphoma had returned. Doctors recommended major surgery to remove cancerous lymph nodes from his chest.  

The news that the cancer was back hit hard. At 19, Sorkin now thought he was going to die. “It was the one time that I couldn’t pull myself out of the doldrums,” he says.

Sorkin’s mother opposed the surgery, though, and found a doctor who recommended chemotherapy for a year. While at Yale that spring and the following fall, Sorkin spent weekends in the hospital getting infusions. “This was in the days when chemo really sucked,” he says.

 

After the diagnosis,  Sorkin and his family—Lisa; Emma, 11; and Claire, 9—decided to travel. Here they are  in Skagway, Alaska. Photo credit: Daniel Arnold But the drugs worked. So, as he had done after his first diagnosis, Sorkin threw himself into activities, working as sports editor of the Yale newspaper and running a business with a couple of buddies, renting TVs and VCRs to students.

“That’s the way I’m ingrained,” he says. “You keep going. What’s the alternative?”

Still, feeling sick, losing his hair and becoming bloated from the medication was difficult. “I looked like some ’50s old guy with a bad comb-over,” he says.

Sorkin graduated on time and went on to Harvard Law School. His first year, he got to know a student who was in all of his classes—Barack Obama. Sorkin recalls that he and fellow classmates could see Obama’s potential. During class discussions, Obama “always tried to bring everybody together,” Sorkin says. Still, “nobody could see this guy as a future president.”  

Sorkin and Obama lost touch after law school. Sorkin practiced sports law at Covington & Burling in Washington and began dating Lisa, who was working on Capitol Hill. Although they had reconnected after college, when both were working for the same Washington firm, they had remained just friends. This time they bonded while watching Anita Hill testify during the 1991 Senate confirmation hearings for Supreme Court nominee Clarence Thomas. Three years later, they married.

Not happy practicing law, Sorkin took a job with The Advisory Board in 1996. The company later split in two and Sorkin joined the new Corporate Executive Board, launching and managing different product and business lines that help companies grow. The Sorkins’ first child, Emma, was born in 2000, and Claire followed in 2002.

As the years passed and he remained healthy, Sorkin no longer worried about cancer. He stopped getting annual scans, but was forced to lose weight and start exercising after his cholesterol shot up from bad eating habits.

Then came the lung cancer diagnosis in August 2007. Sorkin began treatment immediately, and he and Lisa focused on keeping their daughters’ lives normal.

As devastating as the diagnosis was, Sorkin knew he could count on his radiologist-brother and other medical friends to help sort out his treatment. His sister-in-law, a child life therapist, could offer advice on dealing with the kids. He had his mother’s example of resilience in the face of hardship, along with friends ready to provide assistance.

Sorkin’s mother, a longtime smoker, died a year after she was diagnosed with lung cancer. Already incapacitated by multiple sclerosis, she refused treatment, Sorkin says.

“I was feeling like everything that had happened in my life prepared me for that moment,” he says of his diagnosis. “Every nonmedical issue was taken care of, so I could do my best to get better and not worry about anything else.”

Sorkin underwent four months of chemotherapy at The Johns Hopkins Hospital in Baltimore. In January 2008, he underwent successful radiosurgery on his brain after tumors were found there. Afterward, his doctor put Sorkin on a new chemo regimen, which has reduced the size of the tumors in his chest and kept the disease in check for more than three years. Sorkin gets an infusion every month or so.

“I’ll do this for another 30 years and be delighted,” Sorkin says. “There don’t seem to be any toxicity problems.”

Still, no one can say when or if the disease will become active again. “It’s a guessing game,” he says.

Life has resumed its day-to-day rhythm since the disease has stabilized. Lisa is a stay-at-home mom, while Sorkin works part-time for the Corporate Executive Board, arranging philanthropy and service activities for employees. He has joined the board of Congregation Beth El, the family’s synagogue in Bethesda, and coaches Emma’s soccer team.

“I have a hard time planning too far ahead,” he says. “But I am really passionate about the things I’m involved in now.”

He and Lisa say his illness has made them more tolerant as a couple. She overlooks his sloppiness, and both are less bothered by petty annoyances. Dealing with a life-threatening illness “forces you to get perspective, to take a larger view of things and let the small things go,” he says.

In February, the Sorkins were invited to the White House for a visit with his old classmate. President Obama had previously sent a note after a mutual acquaintance told him about Sorkin’s illness. Sorkin and the president talked about their kids and caught up on the years since law school. “I got a big hug from the president,” Sorkin says. “It was very special.”

In July, the family traveled to Alaska and the Pacific Northwest. In August, Sorkin and Emma headed to Philadelphia to participate in a bike ride to raise money for cancer research sponsored by the LIVESTRONG Challenge.  

Spending time with his family remains Sorkin’s top priority. Still, as he watches friends progress in their careers, he can’t help feeling wistful.

“I wonder what I’d be doing now if I hadn’t had this detour for the last few years,” he says. “But I feel so incredibly fortunate to have had it. Look what I’ve done over the last four years.”  n

Julie Rasicot lives in Silver Spring and writes the Education Matters blog for BethesdaMagazine.com. To comment on this story, email comments@bethesda magazine.com.

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