You hear Brian O’Sullivan’s booming, friendly voice in the building before you see him. He seems to know everyone, greeting the parking valet, security guard, and other staff at this sprawling medical building like old friends. A receptionist at the front desk points at him and says, “I saw you on TikTok last night!” O’Sullivan, standing at 6 feet 3 inches and donning a sequined green blazer paired with Buddy the Elf pajama pants and light-up shoes, asks her if she wants to take a selfie. He seems like a confident man who has everything going for him. But four years ago he was in the throes of depression, thinking he had just been handed a death sentence. My “Oh f–k” moment O’Sullivan’s the kind of guy who will not only go out of his way to hold the door for a stranger, but will launch into conversation and leave having exchanged phone numbers as friends. It’s how he’s always been, his friends and family said. After 16 years of working for the state, first with the Department of Transportation and then the New Jersey Motor Vehicle Commission, he left in 2019 to work as an independent contractor, driving people to and from the airport for rideshare companies like Uber and Lyft. For a congenial, easy-going person like O’Sullivan, now 53, it was a great gig. Then the COVID-19 pandemic hit and his business came to a halt. Despite that, by the start of 2021, he still counted himself among the lucky ones, having managed to avoid catching the virus. He felt healthy, but “a little voice” inside motivated him to start off the New Year with a physical. At the time, his biggest concern was that Type 2 diabetes runs in his family and he’d recently been diagnosed as pre-diabetic. On a Saturday in early February, he got an email with the results. His blood sugar was fine, but his white blood cell count was above normal. “I didn’t know what this meant, I’d never dealt with anything like this before in my life,” said O’Sullivan. “I started looking it up and it didn’t look too promising.” According to the Cleveland Clinic, one of the country’s top healthcare institutions, a normal white blood cell count ranges between 4,000 and 11,000 cells per microliter. O’Sullivan’s count, however, was over 16,000. The Maple Shade resident called his cousin, Barbara O’Sullivan, who happens to be a childhood survivor of Non-Hodgkins lymphoma and is an internist at Memorial Sloan Kettering. He trusted her to put his results in context. “I said, ‘Just relax, just relax,’” Barbara said in an interview with NJ Advance Media. “I always caution people to stop Googling because it’s just scary. And for people who see the lab results with no context. You’re seeing these numbers that have asterisks next to them but have no idea what they mean and people panic, often over something that’s insignificant.” A common cold could be the cause, she tried to assure him, and encouraged him to retest in a month. O’Sullivan’s primary care physician gave him the same advice. Wait and watch. “I walked around like nothing was wrong. I was going to be normal,” O’Sullivan said. A few weeks later, new results were less promising. His white blood cell count was up again. His doctor referred him to a hematologist — which he never heard of before. His new reality didn’t hit him until he was walking into the specialist’s office in Moorestown and saw the sign for Virtua Samson Cancer Center out front. “That was the moment right there where I was like, ‘Oh god, this is where it all ends,’” said O’Sullivan. “That was my ‘Oh f–k’ moment.” No longer cancer naive There are about 5,500 new cancer diagnoses a day in the U.S., according to the American Cancer Society. For many, the news might be delivered under the bright LED lights of a sterilized medical office, by a straight-faced, yet compassionate doctor. But for O’Sullivan, his email pinged, instructing him to check his patient portal after an appointment in May. The diagnosis: a rare blood cancer called mantle cell lymphoma. “So, the app told me what type of cancer I had, not a doctor. And that started my love-hate relationship with technology,” said O’Sullivan. Nationwide, the amount of people who accessed their online medical record or patient portal more than doubled between 2014 and 2022, according to U.S. Department of Health and Human Services data. The modern convenience has its upsides. However, the innovation has resulted in people getting scary health news before they’re able to speak with a doctor about the results. News of a cancer diagnosis can be even more daunting for patients with a rare disease like mantle cell lymphoma. There are only about 4,000 to 6,000 new cases of it in the U.S. each year. It represents about 4-5% of all lymphomas, said Dr. Andre Goy, chairman and director of the John Theurer Cancer Center at Hackensack University Medical Center. “Because it has a reputation to be challenging as a lymphoma, when you go online, it’s this kind of doom and gloom,” Goy said. And that’s exactly what O’Sullivan felt as he turned to “Dr. Google” for answers. “It’s like, ‘Surprise! You didn’t get COVID, you got cancer,” he said. “I just felt like my world crashed down right then and there.” He describes that Friday night as the worst night of his life, quickly slipping into a depression. He stayed up, reading anything he could. He learned how men in their 60s with the same disease live an average of five to seven years after diagnosis. In the middle of doom scrolling, he stumbled on his first cancer support group on Facebook, where he was told to find a specialist. He met with Goy in Bergen County that June and was soon dealt another blow. Biomarker testing — a way for doctors to determine someone’s risks and guide treatment — showed not only did he have a rare cancer, he had a TP53 mutation, a high-risk cancer that responds poorly to regular chemotherapy. One last hoorah Goy proposed a more targeted treatment that O’Sullivan could start that summer and the plan gave him hope. But just in case it didn’t work, he wanted no regrets. O’Sullivan made up his mind on taking a road trip out West in the fall “to see the country before I died,” he said. He spent the next few weeks seeing all the places he never thought he’d see, “zigzagging across the country,” putting over 8,000 miles on his car — which was no longer being used to shuttle passengers to the airport for their own journeys. He stayed at new friends' houses, people he’d met online through support groups, O’Sullivan said. “I didn’t have a lot of money, so I just got creative and lived on the cheap,” he said. “Sometimes, I’d be delivering DoorDash in the middle of Iowa just to try and get some gas money going.” If he didn’t have a place to stay, O’Sullivan would sleep in the back of his SUV in the parking lot of a Planet Fitness, where he had a membership and could shower in the morning. He remembers driving back through Colorado and Utah thinking the landscape was beautiful. “And then five minutes later my head said, ‘Well, if I ever get really, really sick I’m just going to come out here and cure my cancer and drive off,’” O’Sullivan said. “Sometimes it’s tough for me to talk about that.” The thought of cancer, of death, of suicide was never far from his mind. Faced with immense mental, physical and financial strain, cancer patients in the U.S. have nearly twice the incidence of suicide of the general population, according to the National Institutes of Health. It has a way of making people feel alone, said Beth Blakey, executive director and chief operating officer at Cancer Hope Network, a national nonprofit based in New Jersey. The network connects people with survivors and caregivers who have faced a similar experience. “From that moment of diagnosis, you’re always on that cancer path,” said Blakey, whose mom is a two-time survivor. “Maybe you’re worrying about recurrences or have to take medications for the rest of your life. Our mentors know what that’s like.” O’Sullivan is frank about how he felt in the first few months after his diagnosis. “I was very depressed. I was extremely depressed,” he said. The small light at the end of the tunnel was the start of treatment that fall. A few days before it was supposed to begin he got a call informing him insurance had denied the treatment . A new kind of battle Roughly 6 in 10 insured adults are denied claims or experience preauthorization delays, according to a 2023 survey by KFF, a nonpartisan source for health policy research. Health insurance denials became mainstream conversation last December, when a 26-year-old man shot the chief executive officer of UnitedHealthcare, the largest health insurance company in the country. O’Sullivan said he doesn’t condone violence, but he understands the anger people feel toward insurance companies. “I was getting frustrated,” he said. “It kept playing around in my head. The insurance company is denying my treatment. Meanwhile, my white blood cell count keeps going up and up.” The treatment Goy wanted to try was a combination of two drugs, known as a doublet, followed by chemotherapy. But while it had been previously studied in clinical trials, it was not yet included in the National Comprehensive Cancer Network guidelines. So, insurance wouldn’t cover it. “I think this is always the problem when you have innovative therapies,” said Goy. “...There’s very often a lag between a novel therapy and it being usable in the real world. And that’s a real challenge.” Many types of cancer require specialized medical expertise that’s out of network or denied — something The Leukemia and Lymphoma Society is trying to change. One study found that 42% of patients exhaust their entire life savings within two years of a cancer diagnosis. “It is incredibly expensive, even with insurance,” said Jennifer McGarry, a senior manager for Leukemia & Lymphoma Society. “People have deductibles, copays, some medications can cost thousands of dollars a month and you need to take them every day for the rest of your life. We hear of people not taking a full dose or skipping a pill or just giving up entirely,” said McGarry. The cancer community has a word for this — financial toxicity. Patients, doctors, and advocates describe it as being as deadly to patients as cancer itself. “I was just like, I’m going to die,” O’Sullivan recalled, feeling defeated. By late 2021, being a cancer patient became O’Sullivan’s full time job. He hadn’t worked steadily in the past two years. If he wasn’t attending doctor’s appointments, he was online reading about cancer or connecting with other patients and their families. But as the months went by, O’Sullivan got sicker. His white blood cell count climbed to 150,000. A sliver of hope O’Sullivan didn’t like shots as a kid but, nearly a year into his cancer diagnosis, he was used to being poked and prodded by doctors. In the winter of early 2022, he was referred to Memorial Sloan Kettering’s cancer treatment center in Basking Ridge where he endured the usual battery of tests. This time, hoping for a better outcome. That February, mantle cell lymphoma specialist Dr. Anita Kumar— not an app — delivered the news. Good news, this time. He was accepted into a two-year clinical trial, called the BOVen study. The first eight months would require weekly visits for a three-drug immunotherapy IV treatment and follow-up testing. The rest of the trial would require two daily oral pills, Kumar said. “I just started crying and I would say 85% of the depression left my body that day because I didn’t even know if this was going to work, but I knew I had a chance,” said O’Sullivan. O’Sullivan began treatment almost immediately, staying at a nearby hotel with financial assistance from Memorial Sloan Kettering, and he settled into a routine, with the help of his friend Dawn McCall. She would pick him up and drop him off for “cancer camp” as they called it. Oftentimes McCall, who works near the cancer treatment center, would join O’Sullivan for lunch and bring him dinner in the evening on long days. “I’ve seen cancer many times before,” said McCall, who lost her grandparents to cancer. “He was a trooper.” After just one month, O’Sullivan’s scans and bloodwork yielded no evidence of disease. In fact, at least 11 clinical trial participants were progression-free at 2 years, including O’Sullivan, said Kumar. Because of the trial’s results, the combination of drugs is now available to other patients outside of a clinical trial, Kumar said. O’Sullivan wore his optimism on the outside. He started dressing up colorfully for each visit, pairing his Christmas pajama pants with his sparkling blazer, or maybe a suit covered in candy canes and snowflakes. “I just try to shine that light because it was pretty dark for a while,” he said. “I was living in a world of darkness for so long. That’s why I can’t live like that anymore.” He also started sharing his cancer journey on YouTube, Instagram, and Facebook. He developed a following from people who, like him, went down the rabbit hole of the internet looking for answers. One young woman found O’Sullivan’s Instagram page after her father’s mantle cell lymphoma diagnosis and reached out. “She said, ‘I don’t even know what’s going to happen, but you gave me some hope,’” O’Sullivan said. Learning a new normal Walking into his follow-up appointment with Kumar in January this year, O’Sullivan projects an image of confidence. He’s in complete remission today but still sees Kumar every three months to make sure. For this visit, O’Sullivan added an orange-brimmed hat and bedazzled sunglasses to his outfit for extra flair. McCall is by his side for support. Despite his swagger, O’Sullivan admits he’s still scared. “I try to put out that image that it doesn’t make me nervous, but it does, it really does,” says O’Sullivan. He feels healthy, but not a day goes by that he doesn’t worry about his cancer coming back. Every day he wakes up with back pain or has a lapse in memory, he questions the cause. “I don’t know if it’s the 50-something-year-old brain or if it’s the cancer brain,” O’Sullivan says while waiting for the results of his latest blood test. When Kumar enters the room with his results, they hug like old friends and she tells him: “Everything looks beautiful from my end. When O’Sullivan initially got his diagnosis, he thought, “Why me?” “But now it’s like, ‘Why not me?’” O’Sullivan asks. “A silver lining is I was able to go down to D.C. and I was able to share my journey and share my story.” O’Sullivan has thrown himself into patient advocacy, working with organizations like the Leukemia and Lymphoma Society, the American Cancer Society, and the Cancer Hope Network to connect with patients and push lawmakers on issues important to the cancer community. It’s a natural fit for the same man who, about a decade ago, began an annual letters from Santa Claus fundraising campaign for Special Olympics New Jersey and started taking the nonprofit’s Polar Bear Plunge at Seaside Heights, raising thousands of dollars for the charity. “Brian, before his diagnosis, was a strong advocate for a lot of things. It’s in his nature,” his cousin Barbara said. “So, this makes sense because now his focus can be more specific.” Like many cancer survivors, he’s struggling to reenter the workforce. But he’s hoping to work as a patient advocate so he can give back to others. “I’ll never be grateful that I was diagnosed with cancer, but it has opened up some doors and it’s given me some purpose to fight for others and advocate for others,” he said.