A rumble of thunder in the distance usually heralds a coming storm, bringing rain, lightning, winds and unpredictable weather. For Ben Brown, 40, that storm is raging inside him, and thunder is the best way he knows to fight it.
Diagnosed with NUT carcinoma in 2019, Brown, a Wilmington, North Carolina, resident, fights the rare disease with a determination born from competitive years spent on a mountain bike, a strength from his family and a confidence in his care team developed from his close relationship with UNC Lineberger’s Jared Weiss, MD.
Brown said the best way he can describe his cancer is to compare his experience to a storm. His cancer is the lightning bolt that struck him and his family out of nowhere; his thunder is how he responds to that. He writes on his blog, fightforben.com, “Sometimes we rumble. Sometimes we violently shake the earth. But as long as we let the world know we are reacting to the lightning, we are heading in the right direction. There has to be THUNDER, or we won’t be able to continue fighting this disease.”
In 2019, that lightning struck Brown and his family, including wife Ann, and two sons. After trouble with his sinuses while training for the Leadville 100, a major mountain bike race in Colorado, a scan revealed a tumor in his nasopharynx. Subsequent tests showed spots on his lungs, and he was diagnosed with NUT carcinoma, a cancer so rare that even the National Cancer Institute cannot estimate how many people have it. He visited five different cancer centers before settling on UNC Lineberger, and said he feels fortunate to have connected with Weiss.
“Dr. Weiss met me without an appointment, had done his research and had ideas on how to treat it,” Brown said. “He didn’t view me as just another patient. He had creative ideas and was very optimistic about treatment. I knew if this man was taking time out of his personal schedule to meet with me on a Monday night, then good things were to come.”
While his relationship with Weiss has been a positive aspect during his cancer journey, Brown has experienced some setbacks. Because his cancer is rare, treatment options aren’t tested, so Brown has completed two clinical trials, radiation and is on his second course of chemotherapy. Things are looking up for Brown, though, as recent scans have shown his tumors are shrinking.
Strengthened bonds with friends and family
The experience has helped Brown look more closely at his family and friends in his life, and he has become more appreciative of their support and love for him. Like most patients with cancer, the outpouring of concern and well wishes can sometimes be overwhelming for Brown, but a close friend helped channel that into a positive experience by holding a barbecue and fundraising event in Charlotte, North Carolina, that brought in $2,000 for UNC Lineberger.
“I got to see family and friends, and I had a good time,” Brown said. “People knew that it was more of a one on one with me. There are people who don’t know what to say, but they got to say some things they may not say normally.”
Brown’s immediate family live in Colorado, and he said he sometimes feels their absence, but his experience has ultimately brought them all closer together. His older brother has gone to appointments with him, his sister-in-law accompanied him to treatments, and he’s made an effort to visit his family in Colorado.
“It’s just been a really good way to look at life a little differently as a family and talk about hard topics,” Brown said. “I have to accelerate conversations with my parents about their health. I have a new bond with my brother; I used to only see him once or twice a year, now I see him more. Cancer’s giving me a new opportunity to look at family values and has brought to light what a family is. It’s the same for friendships.”
Writing as an outlet
Brown also has been addressing those hard topics throughout his blog, chronicling the ups and downs of his cancer experience. As an avid mountain biker, Brown said he used to write race reports that highlighted his racing journey, and he decided he would take this same editorial approach for writing about his cancer journey. He thought it would help him express his emotions and also help others be more empathetic if a friend or family member has to deal with cancer.
“The way I like to write is to write a big metaphor about a situation or tell a story,” he said. “People often can’t express emotions, or can’t handle the fact that I have cancer, and it’s scary. I want to draw people into my life, and if I can write passionately about my disease, I can pull these people in further. Maybe I can teach these people some sort of life lessons that they didn’t know they needed.”
Writing the blog also helps Brown with his own emotions, something he had struggled with as he tried to process his diagnosis. He downplayed his cancer for a time, worrying about people’s reactions to the severity of his disease, and with his writing, he is able to satisfy a need to express himself and share his reality with others to draw them into his world.
“With the thunder blog, I really let people know what was going on. I let my guard down on that one,” he said. “I was emotionally unstable on my journey, but by writing that, it helped me put my feet on the ground. I let people know cancer treatment sucks, and I cry in the morning. It hurts to be alive. I’m not going to give up, but at the same time, I need people around me to create this thunder, electricity and energy or I can’t do it.”
Brown’s energy is steady, though, and he credits the care team at UNC Lineberger with helping him keep a positive outlook.
A special bond between patient and physician
“People ask me why I go to UNC, and the answer is the people. From Dr. Weiss to the nurse in the lab drawing blood, everyone I’ve been involved with cares genuinely about their patients,” Brown said. “Dr. Weiss and I have a unique relationship; it’s nothing I ever expected out of cancer, and I cherish my time with him. He takes care of me and my family like we’re his. Having cancer is not easy, but it’s better to have a team like I have. I don’t dread going.”
Weiss also finds the relationship fulfilling, and said it’s a tool for better patient care.
“Being a doctor, especially an oncologist, means choosing to spend your day immersed in human suffering. At the end of a clinical day filled with difficult conversations and desperate attempts to improve bad situations, my emotional ‘tank’ often runs low. One of the most effective things to ‘fill the tank’ is a patient like Ben,” Weiss said. “A close doctor-patient relationship where we’re pursuing the same goals together is restorative. When Ben sends me a picture of him with his kids or after biking to the top of the mountain, it is chicken soup for the doctor’s soul. It gets me through the day and helps me to keep my humanity. It reminds me why I’m working hard, both in the office and in research.”
For now, Brown is content to live his life in three-week blocks, from appointment to appointment. He knows there will be more storms to come and he hopes to weather them with just as much thunder and electricity as he has for the past two years, with his family, friends and care team by his side.
“If I can create a narrative on how awesome of a time I had in Colorado or tell the story where I made the big metaphor about thunder, it draws everyone in; he’s fighting cancer, but sending out a positive vibe. He has a massive uphill battle, but I don’t want sympathy,” he said. “I want them to say ‘holy crap, Ben is kicking ass, why can’t I kick ass today?’ I want to hear how it’s changed their lives and opened their eyes.”
Editor’s Note: We are sad to share that Ben Brown passed away on Feb. 10. His approach to life and his cancer diagnosis has been inspiring, and we are grateful he and his family allowed us to share his story. We encourage you to read the touching post about his passing on his blog, https://www.fightforben.com/blog/to-our-thunder-crew.