Jenna Benn sat in her favorite childhood restaurant in Chicago, waiting for the doctor's call. She loved this place; it made her feel safe. She hadn’t eaten there since high school, but that day, Dec. 20, 2010, she came back. She needed comfort.  Her body had been acting strangely. For months, she’d been losing weight, her curves fading into lines. She’d been on a health kick and exercising regularly, but the weight loss was rapid. Perhaps it was the gym that kept her so tired, but she’d always been an active early riser. Then there was the flu she couldn’t kick, a trapped nerve in her neck and an unusual sensitivity to light. At 29, her body seemed to be going haywire.  It was 5:15 p.m. when the waiter took her order. Jenna asked for spinach bread and spaghetti marinara. She rested her phone in her lap, trying to hold her nerves together as she waited, her mind pulling her into the unknown.  As the waiter delivered their food, the phone rang.  Jenna listened to her doctor. Relieved, she gasped, “Well that’s good news!” The tightness in her chest lifted.  She paused, listening to the doctor’s response. Then the tightness returned. “I thought you said, ‘You don’t have cancer,’” Jenna said.  “No, you do have cancer,” came the reply.  Seventy thousand young adults aged 15-39 are diagnosed with cancer each year, representing 6% of the entire cancer population, according to the National Cancer Institute. While cancer is a complex and heartbreaking disease at any point in one's life, being diagnosed in one's twenties and thirties can disrupt major milestones: new career, financial independence, fertility.  The average cancer sufferer is a generation older than this 6%. Consequently, his or her life looks vastly different from a millennial's. Many young cancer patients miss opportunities more senior patients have either already experienced, such as having children, or can afford, such as early retirement or a leave of absence.  Dr. Sage Bolte is a licensed clinical social worker who counsels cancer patients and their families during and after treatment. She has witnessed key disparities between the age groups: Older patients are more likely established or nearing the end of their careers, many with life partners and grown children. “They’ve reached a lot of milestones,” she says, “whereas a young adult’s world is truly halted.”  Young adults battling cancer must face tortuous questions: Will my boyfriend or girlfriend abandon me to the demands of my disease? Can my friends relate to me anymore?  “Many of the 65-year-old’s friends aren’t going to retreat because they’re afraid of cancer. Whereas at 25, that absolutely might happen,” says Dr. Bolte.  The logistics and economy of caregiving also comes into question. Many patients need help preparing meals or reaching the hospital, but one group is far more likely to have a partner, adult children or a strong community to look after them.  Then there’s the massive price tag that haunts cancer treatment. The cost of mortgages, weddings and childbirth can look like small change compared to cancer treatment and the longterm care that follows. And typically debt for young people is already high (student loans, mortgages) while income is lower during the early, less profitable years of one's career. According to Pew Research, the debt-to-income ratio of young adult households more than doubled between 1983 and 2007. By 2010 debt represented 1.46% of household income for ages 35 and under, compared with 1.22% among older households.  Jenna Benn lies in her hospital bed. Her scar is evidence of a infected chemotherapy port that resulted in sepsis and nearly claimed her life.  As it stands, unpaid medical bills are the biggest cause of bankruptcy in the U.S. An estimated 21% of medical bankruptcies in 2013 were filed by people under 34 years old. A Hutchinson Institute for Cancer Outcomes Research study found people with cancer were 2.65 times more likely to file for bankruptcy, and 21-to-35-year-olds had the highest level of bankruptcy across all but one type of cancer. In 2012 just over one in four young adults was uninsured all together, compounded by the fact that uninsured young people are twice as likely to develop late stage cancer.  Diagnosis and research carry their own challenges. Young adults typically have little context for cancer's physical manifestations, and therefore, no reason to suspect they’d have it. At that age, you’re invincible — cancer and disease are abstract concepts whose symptoms one might explain away by stress or flu.  Complicating things further, doctors typically associate cancer with seniors. Many young adults with cancer will make several visits to a doctor before the disease is detected or even tested for. The Teenage Cancer Trust in the UK found that almost a quarter of teenage cancer patients aged 13-24 went to their doctor four times before “their symptoms were taken seriously and they were referred to a specialist." In brief, youth makes it less likely a patient will be diagnosed. That doesn't even account for racial demographics: Young minorities are underrepresented in clinical research.  The most common cancers in 15-to-39-year-olds include breast, thyroid and leukemia. Some experts even suggest young adult cancer has its own distinct biology, making research and treatment more imperative than ever.  But young adults fight back differently. They seek the Internet to relieve loneliness, rally social media to demand better care and research, and even establish their own non-profits and outreach initiatives. They're even transforming the dialogue around cancer, introducing current language and outreach that appeals to today's strong, defiant millennial worldview.  When Jenna got home from the restaurant, her parents were huddled around the phone. They looked up as she walked through the door of their suburban Chicago home, their faces blank and colorless as the doctor told them their oldest daughter had cancer, because their daughter couldn’t bear to herself.  They moved to the dining table, where Jenna gave her own eulogy. She addressed her parents, telling them she loved them, she loved her life. It wasn’t her time to go. It made no sense. At 29 life’s pieces had finally fallen into place: great job, friends, a new apartment that had begun to feel like home.  She found the whole thing outrageous, absurd even.  She stared at the people she loved and they stared back. Her dad opened a bottle of wine and they looked out the window at the falling snow.  Four weeks later, Jenna discovered she had a rare and aggressive form of blood cancer: gray zone lymphoma. The disease affected about 300 known patients in the U.S. at the time.  “I felt so overwhelmed by emotion that I needed to put it somewhere.” Jenna knew she had to write.  Her blog Kill it in the Butt! was cathartic and raw, with glimpses of pain and confusion: “The body that I had known for 29 years was no longer my own,” she wrote in her first entry. “I felt deeply betrayed.”  The blog also bore the marks of determination, optimism and even humor. To Jenna, being open with her illness and creating a community through blogging was typical of who she was. “I believe people deal with cancer in the same way they deal with life. You might see a slight exaggeration of how people are.”  Dr. Bolte agrees. Who patients are before cancer — their resilience, life experience and outlook — plays a huge part in how they tend to confront the experience.  Not surprisingly, then, Jenna’s response mirrored how her generation is relating to their respective illnesses, mainly by connecting with each other.  Jenna met Jonny Imerman on New Year’s Eve in a cafe in Chicago’s Southport Corridor. Imerman was diagnosed with testicular cancer at 26. Mutual friends had put them in touch.  After treatments he pledged to take all the knowledge he acquired to help other other young people with cancer. Today, Imerman Angels pairs young adults suffering from cancer (and the people who care for them) with mentors — people who can suggest what to eat when they have mouth sores so painful that solid food is out of the question, or who can assure them their hair will grow back one day.  Over an hour and a half, Jonny told Jenna that her long brown hair would probably fall out, that her energy levels would drop, that fertility could be an issue. “There are so many issues only young adults have,” says Imerman.  But Imerman’s survival was encouraging. There he was, in front of Jenna seven years after remission and four marathons later. He had survived, and so would she. Jonny and Jenna sat together in that cafe and closed the place down. Jonny remembers she left smiling.  “I hate you and I wish you both had cancer,” belts the Stupid Cancer radio show, which calls itself “The Voice of Young Adult Cancer.” The line from South Park is typical of the show's snarky, irreverent script. Its tagline is simple: “I’m too young for this.” Its approach is powerful: “I’m as mad as hell and I’m not going to take this anymore.”  Stupid Cancer host Matthew Zachary has been doing this for years — it's his 299th show. He tells listeners it’s okay to be angry, but that they’re part of a wider movement where they can effect change: Young people shouldn't settle for being overlooked in research studies, where they’re frequently outliers, or risk being bankrupted by care, or getting lumped into wards with children or people their grandparents' age.  According to a 2006 report, while the rate of survival among children or adults with cancer had improved in the past 30 years, among young adults it had barely shifted. The report was a watershed. It illustrated in stark terms that young people were a group in their own right, that failing to recognize them in clinical trials led to isolation and depression, which ultimately jeopardized their survival.  Since then, organizations like Zachary’s Stupid Cancer, Imerman Angels, Critical Mass, Cancer and Careers and Livestrong Fertility are helping young adults access the care that meets their unique needs, while easing the pangs of isolation.  Suleika Jaouad, New York Times 'Life, Interrupted' columnist and cancer survivor, at the OMG! Cancer Summit for Young Adults, hosted by Stupid Cancer.  With the help of the Internet and a dose of what Zachary calls "millennial entitlement," the change has been significant. After pressure from young adults and their supporters (oncologists, researchers), the American Society of Clinical Oncology produced fertility guidelines in 2006, and there’s also been an increase in programs aimed at young adult cancer patients in American hospitals. “We’re really impatient (a lot more than our parents are), we’ve grown up in era of instant gratification and we’re not used to waiting for anything,” explains Zachary. “We have freedom to do whatever we want at moment’s notice, instantaneously, on our terms, today, so why shouldn’t that apply to changes you want to see in healthcare?”  After Zachary banters on the air about ecommerce, Toronto Mayor Rob Ford’s most recent faux pas and Sandra Bullock's role in Gravity, he asks for 10 seconds of silence. The waves go quiet as the show’s host remembers Emily Morrison and Geoff Barnard, two members of the Stupid Cancer community who died the previous fortnight.  Morrison was diagnosed with a brain tumor just before her 24th birthday. Like Jenna, she kept a blog, a “to-see” list alongside photos of her skydiving, meeting Celine Dion, riding an elephant. In her final entry, she wrote, “People who meet me in public never know that I’m sick until they are told.”  The empty airwaves hum. Cancer has taken another yoga-loving recent college graduate, who had only just moved to New York to kickstart her career.  Even before she knew which kind of cancer she had, Jenna decided to undergo fertility treatment. Jenna’s insurance didn't cover the procedure, but luckily Fertile Hope, now Livestrong Fertility, awarded her a grant. Amidst nausea, pain and fatigue, she wrested an important piece of her future out of cancer’s hands and back into her own.  Although the cancer was spreading fast, Jenna made time for the treatment. Over several weeks, she injected herself with hormones to overstimulate her ovaries. By the time she sat on the hospital bed, waiting for her eggs to be harvested, her belly looked three months pregnant. But her diminishing frame suggested otherwise.  “It feels so strange to look pregnant, but to appear thinner than I am used to,” she wrote in her blog.  Yet again, she struggled to preserve her future in a way that older patients — typically 55 and over, who’ve had families or hit menopause — don’t have to. All of a sudden, Jenna felt she had options. “From the beginning I was thinking about life after cancer. It changed how I dealt with the whole experience. It was pivotal,” she says. Knowing that one day she might be able to have children kept her going through the agony to come.  Jenna's first round of chemo at Prentice Hospital in Chicago, Ill., overlooking the lake.  The day after fertility treatment, on her mother’s birthday, Jan. 22, 2011, Jenna began 120 hours of chemotherapy. At first, the hospital reminded Jenna of a hotel. There was an Argo Tea in the lobby, a flower shop at the entrance, dim, romantic lighting and comfy chairs. Her floor had views of the Chicago lakefront and skyline.  But then she turned the corner and “realized the hospital scenery was only a facade masking rooms where the sick and dying remain,” she wrote in her blog. “I took a few steps back, turned to my parents, and let out a long deep yelp. I cried into their arms with [sic] everything that I had.”  At 3 p.m., a cocktail of etoposide, prednisone and vincristine entered her bloodstream through a port catheter. “I can only hope this date and time will one day be cause for celebration,” she wrote. It was the first of six rounds of chemotherapy over 4.5 months.  Jenna’s world became small. The girl who had travelled to Europe, South America and the Middle East, who’d spent her college years abroad, would lie in bed for days, watching the sun move from one point to another. On better days she’d watch reality TV with the sound off because she couldn’t bear the noise.  Despite encouragement from friends, family and blog followers, she felt more isolated as treatment progressed. “It’s a very selfish disease. It forces you to turn inwards and in many ways you’re self-absorbed, fighting for your life.”  Jenna's triumphs consisted of wriggling her toes or getting out of bed to go to the bathroom. Meanwhile, her friends posted updates about weddings, birthdays and trips abroad. “I felt like my life was on hold, while theirs was on Play,” she says. The isolation weighed her down.  Jenna's treatment turned more physically and psychologically challenging with each round. She became increasingly dependent on her parents, as if she'd reversed into childhood. Yet during each five-day chemotherapy session, she spent time with people a generation or two older than her.  Jenna decorated her room with photos of friends and family, places she wanted to travel and vision boards. One showed the sun and sea. She pictured herself dipping her feet in the water, the warm air wrapping around her body, far from the sterile ward where she fought renegade cells for the right to exist. The beach sustained her, a hope for a future moment of peace.  Jenna Benn gives a moving speech at the first Twist Out Cancer event in Chicago, Ill., in 2011, three months after finishing treatment.  On March 3, 2011, Jenna learned her cancer had gone into remission after the second round. “It was an amazing feeling to be lifted out of what was a living hell,” she says, “to feel like you could breathe again.”  But it was a shallow exhale. Like antibiotics, she had to complete her course of chemotherapy. To pluck up the courage and energy she needed for the fourth round, Jenna once again reached out to her online community.  She reconnected with old friend Ann Altman on Facebook. They hadn’t seen each other since summer camp, about 20 years before, but when Ann noticed Jenna posting updates about her health, she got in touch.  Ann told Jenna she had been diagnosed with Hodgkin’s lymphoma at 23, and was now fully recovered. “It was really important to me that she know that she wasn’t the first person who’d gone through a cancer diagnosis.” says Ann. She quickly became Jenna's rock, her mentor.  But Jenna craved a wider support system. She wanted to know who read her blog, who could keep her company beyond the confines of her known community, beyond her living room.  She slowly climbed out of bed, got dressed, put on her wig, applied lipstick (which she’d sworn to do every day) and stood in front of her webcam. For 30 seconds, she did the twist. (If you listen carefully, you hear a thud halfway though. Jenna’s balance was so shaky that she knocked over a lamp.) She posted the video and challenged other people to twist with her.  She didn’t anticipate the response. Her blog analytics gave her a sense who was reading, but soon she received video responses from friends, from people she’d never met, as far as India, Dubai and France, from people who filmed twists in their living room, from others who filmed group-twists at Bar Mitzvahs. Finally, she had put real faces to the stats.  During the grueling two rounds of chemotherapy that remained, videos kept landing in her inbox. She called them “little e-gifts.” They popped up when she least expected it, and when she needed them most — in the hospital, at home in bed, before another procedure.  “It was the best thing people could’ve done for me," she says. "It made me feel supported, included and loved, like I had a place at the table … In many ways it saved my life.”  After six rounds of chemotherapy, Jenna finished with treatment, but in other ways her struggle had only just begun. “What people don’t talk about is that once you hit remission, you don’t get back to who you were,” she says. She kept trying to circle back and reclaim the life she had before cancer, but she couldn’t.  Around this time, Ann wrote Jenna an email: “Healing is different than fighting. It can be just as hard and confusing. It's about taking what you fought so hard for, and making it work for you.”  Specifically, young adults with cancer must come to terms with the physical and emotional trauma still ahead. According to Dr. Bolte, the risk of depression, post traumatic stress and anxiety after cancer is very real. Young adults must factor this battle into the identities and relationships many still have yet to forge.  Jenna Benn at a yoga event during her treatment, with teacher and mindfulness instructor Becky Strauss.  First, it’s difficult to transition from regular hospital visits — where patients are constantly monitored, tested and looked after, surrounded by machines and implements — to nothing. It’s a huge jolt to the system. Data shows a spike in anxiety from the time of diagnosis to 6 to 12 months after, when patients are typically coming off treatment and reckoning with their new normal.  For Jenna, the big question was: “How do I accept the fact that that person is forever changed?”  According to Bradley Zabrack, an associate professor at the University of Michigan who wrote the report, it’s not so much that cancer causes depression as much as it creates conditions that strongly contribute to it. One's ensuing isolation and time away from the workforce are massive factors.  “Cancer has come into your world if you like it or not. It’ll change parts of you that you have no control over, and it’ll change the people around you,” says Dr. Bolte. Surviving cancer amounts to nothing less than a “redefinition of self.” And many young people aren't on sure footing with themselves yet, cancer or not.  After treatment Jenna wasn't interested in the minutiae of life, the “bullshit” of who’s dating who. During treatment, “I was used to connecting with people on a serious level. I couldn’t do small talk any more,” she says. She had to learn how to interact with family and friends, transition from a patient to a daughter and a friend, once more.  Specifically, she started dating again. “It’s so hard. You have so much more baggage than anyone your age,” says Jenna. “My ego was in the toilet.”  OKCupid dates had their own set of challenges. She had to remember how to make small talk, how to avoid life and death issues on a first date.  “It is so hard to know when to talk about cancer," Ann wrote to Jenna in an email. "When do I tell? How much do I tell? Will I scare him? Am I unloveable?”  Dr. Bolte says physicians and therapists don't prioritize counseling young cancer patients through issues like dating and sexuality. “The idea that you’re only sexual if you’re young, beautiful and healthy is bullshit,” says Dr. Bolte. “We don’t do enough to teach young adults how to keep their sexual self intact [through cancer].” She says most 27-year-olds don't know what premature menopause, a common side effect of chemotherapy, looks like: paused periods, pain during intercourse and hot flashes. And men are just as likely to feel bad about physical changes, such as weight gain from steroids and scars.  Jenna Benn dances through the first Twist Out Cancer event, at Chicago club The Hideout. It was her "coming out party" in August 2011, three months after finishing treatment.  Elbowing past her insecurities, Jenna experienced a manic desire to live. She found an entirely new community to share her experiences with, specifically, a thriving young adult cancer community in Chicago.  “Cancer survivors throw the best parties,” she laughs, remembering her first get-together, thrown by Imerman Angels. She danced like never danced before. “People were letting loose in a way that isn’t normal, but is normal for this community.” Any insecurities about dancing in public or making a fool of themselves had evaporated.  Jenna also registered her own successful non-profit called Twist Out Cancer, as a way of helping other young adult patients build up communities and engage their friends. She didn’t want them to suffer from the isolation she initially experienced. Young adults can join the network, set up profiles and post their own challenges to family and friends, all inspired by the twist.  Although Jenna’s life changed profoundly after cancer, the milestones she’d left behind were still within reach. Her boss was very understanding; he asked a counselor to meet with Jenna's colleagues so they could voice their expectations and fears for their coworker. She could log in to work at night and arrive when she felt up to it.  Then in November 2011, six months after finishing treatment, Jenna met David Shersher. Over a 7.5-hour first date, they discovered he lived a few blocks from her in Chicago, and nearby when she lived in Montreal.  It helped he was a surgeon who specializes in treating cancer, who comes face to face with the tumors themselves. The pair respects what each other brings to the table: Jenna’s blogging and advocacy and David’s medical knowledge. “He’s able to enjoy life in a way most people don’t know how to do, because of what he sees,” says Jenna.  Two and a half months after they met, David ended a night shift. He took Jenna to the conservatory they’d visited on their second date. Among the flowers, he proposed.  Eighteen months later, they married, surrounded by sea, under the Israeli sun. She dipped her feet in the water, the warm air wrapped around her body, far away.
'I'm too young for this.' During chemo, Jenna Benn, 29, watched as her peers reached life milestones she abruptly had to set aside.