by Zach Read - firstname.lastname@example.org
Emergency room physician Dave Carbonell had completed nearly seven years of medical education when he was diagnosed with acute lymphoblastic leukemia (ALL) in February 2012. The symptoms started a month earlier while he was riding a road bike in California, between interviews for his first post-residency job.
“I was used to riding 40-60 miles on the road or two to three hours on trails,” said Carbonell, who was four months away from graduating from the emergency medicine residency program at UNC Hospitals at the time. “But suddenly I felt this pain in my back, and I was riding at a much slower speed than usual.”
He dismissed the initial symptoms as minor, attributing them to being tired from the stress leading up to the interviews and to not adjusting the seat height correctly on the bike, which he’d borrowed. To properly recover, he took a week off riding after returning to Chapel Hill. A week later he got on the bike again, assuming he’d feel better and stronger after the rest. But as he traveled on rural North Carolina roads, he experienced more pain in his back, rode at a slower pace, and became fatigued. He also began spiking fevers. As a resident in the UNC program, he worked 55–60 hours a week in Emergency Departments (ED) at UNC Hospitals in Chapel Hill, WakeMed in Raleigh, and Person Memorial in Roxboro. He’d recently seen patients in the pediatric ED at WakeMed.
“It was the height of flu season, and I can remember parents bringing their kids to the ED with fevers,” he explained. “I thought I must have picked something up from one of them. But I should have known better – I wasn’t sneezing, and I didn’t have a runny nose, a cough, or any other symptoms of one of their viruses.”
He took Tylenol and Advil to reduce the fevers and limit the back pain. Then came another ride – this time on his mountain bike on trails in North Raleigh with one of his oldest friends. He was having more trouble than in the previous weeks, when he’d first noticed a change in his energy. He grew so frustrated with his inability to ride at the level he’d come to expect that he got off the bike, picked it up, and threw it.
“That’s when I knew I needed to be examined,” he said. “I called one of my attending physicians and went to the ED at UNC. I thought the back pain was for an infection, but the MRI came back clear. The blood work, however, wasn’t normal – it revealed the presence of blast cells.”
While sitting on the table in the Emergency Room, he thought there was an obvious reason for the blast cells. He’d neglected to take malaria prophylaxis before a medical trip to Nicaragua earlier in the winter, and he must have gotten malaria. That would explain the emergence of the cells.
He was admitted to the hospital that night, his bone marrow was biopsied the next day – February 14 – and he received the results.“Acute lymphoblastic leukemia – ALL. Cancer had never crossed my mind as a possibility.”
From Doctor to Patient
Ninety-eight percent of the cells tested in the biopsy were cancerous. Due to the aggressiveness of ALL and the progression of the disease in him, he was rushed in for treatment at the North Carolina Cancer Hospital.
“Typically, you’d see 50–60 percent cancer cells in the biopsy and the rest normal,” he said. “The extremely high percent of cancer cells is why I had so much pain in my back. ALL is a bone-marrow cancer, and the cancer cells had pushed out all the regular cells and were putting pressure on the bones.”
From the moment of diagnosis on, everything became a blur. His career would have to be put on hold; there would be no California, which was his dream location for practicing medicine. He feared that a long-distance relationship he’d been in since medical school was in jeopardy. Yet, he had to clearheadedly decide, without hesitation, which treatment plan he should select. A UNC research team told him that he qualified for a study in which young adult patients with ALL receive pediatric treatments.
“There was no data on the study, so there was no way of telling how I might do,” he said. “But I could see that the numbers for young adult patients like me who received adult treatments weren’t good, so I felt that receiving a pediatric treatment plan was my best bet.”
There was no sugarcoating it; it would be challenging. The plan is designed to be intense because children are better able to physically handle more rigorous treatments – but at 28 years old, given his commitment to physical activity and good health, his body could, he and his care team hoped, respond well.
He went on to endure seven months of IV chemotherapy treatment as both an inpatient and an outpatient, before the two-and-a-half-year chemotherapy maintenance phase. Even after the initial inpatient phase, after transitioning to outpatient care, he felt like he lived at the hospital.
“I was there at least three days a week – sometimes more, depending on which cycle of treatment I was in,” he said. “Sometimes I’d be there for an entire day, a few days at a time.”
He lost all his hair, was continuously nauseated, and experienced serious spinal fluid headaches after lumbar punctures for chemotherapy delivery, among other side effects. His low point came after whole-brain radiation.
“That was probably when I was at my weakest, emotionally,” he admitted. “I’d been through intense chemotherapy, and it had taken its toll. I wasn’t feeling myself getting better, and the radiation was causing vomiting, headaches, and cognitive changes. For years, I’d prided myself on being active -- on being an athlete -- and I couldn’t do anything physically, and I didn’t see an end in sight. I’d poured everything into becoming a doctor and I couldn’t function on my own, without being cared for.”
He credits his physician, Dr. Matthew Foster, of UNC Lineberger Comprehensive Cancer Center, with understanding him as a patient and for acknowledging the challenges that young adults like him face when their lives come to a total stop just as they are embarking on their careers.
“Because I was in so much pain, I remember writing him an email and asking if the amount of pain I was experiencing was normal and where it should register on a scale of zero to 10,” recalled Carbonell, laughing. “I wanted to know if I was just being a wimp. His response was perfect for me: ‘This treatment plan goes to 11.’ It was a quote from This is Spinal Tap, and it kind of sums up how he was able to be honest about the challenges of what I was going through, but do it with a sense of humor at the right time. It’s what I needed.”
Although Carbonell experienced lighter moments throughout treatments at North Carolina Cancer Hospital, the emotional and physical pain took an immense toll on him. He wishes he could say that pushing himself on the bike so often allowed him to endure more pain – “That would be a better story,” he said – but it didn’t. And the unique perspective of being a physician contributed both positively and negatively to his experience of illness.“An understanding of human physiology helped me process what I was feeling, which was good,” he said. “My medical education also helped because I was familiar with the drugs I was getting and how they worked. But being a doctor also distanced me from the experience I was having. I looked at myself in a clinical light, and that ended up leading to a lot of emotional trauma down the road. In the moment in my cancer struggle when I was doing the most intense chemotherapy treatments, I wasn’t processing the grief I needed to.”
A self-described Type-A planner, Carbonell had done all the preparation he could do to become a physician: he’d taken advanced-placement courses at William G. Enloe High School, in Raleigh, to pave the way for pre-med requirements and a double-major at NC State; spent four rigorous years at Columbia University College of Physicians and Surgeons; and fully dedicated himself to his patients and the attending physicians in the UNC program.“Cancer shattered all my plans,” he said. “I had the next 10 years of my life figured out. I was going to move to California to practice medicine and live the kind of outdoor lifestyle I’d dreamed about, get married, and buy a house. All that disappeared, and all of a sudden I didn’t know how much longer I was going to live.”
Although he’d expected to be on his way out west at the time he was diagnosed, he feels fortunate that he was able to be treated in the same community of physicians and health-care professionals he’d grown accustomed to working with at UNC Hospitals.
“As an emergency medicine resident, you work in every part of the hospital at some point,” he said. “You have to know about internal medicine, surgery, OBGYN, pediatrics, and so on. I worked with residents and others throughout the hospital, and in addition to the residents and people from Emergency Medicine, they visited me regularly. It was huge to have so much support.”
The first person he notified when he was diagnosed and admitted for treatment was UNC emergency and geriatric medicine physician Kevin Biese, who was residency director of Emergency Medicine at the time.
“He was at my bedside right away,” said Carbonell. “I was scared about what this diagnosis meant not only for my future plans as a doctor, but also for how I’d go about affording treatment. He put the full force of the department behind me and said, ‘We will give you medical benefits – we aren’t going to cancel your contract.’ I know residents from other programs who have gotten sick and weren’t supported. That’s not what happened to me. Having that support was so important.”
Biese deflects the credit and instead points to the collective effort of many in the UNC medical community who rallied together to help support Carbonell.
“UNC is a mission-driven place,” said Biese, “and this is what we do when someone needs help. We believe in the individuals who we train because if they feel that support, then they will be better providers. Individuals from Clark Denniston to Cindi Trinidad and others were instrumental in making sure that Dave had what he needed in terms of his insurance, the rearranging of his schedule so that he could still graduate. I was just a representation of the UNC system. It was a time I was most proud to be a part of UNC.”
Nonetheless, Carbonell’s illness was personal for Biese, who describes it as one of the most challenging experiences of his career.
“As a residency director, you develop a deep relationship with the residents,” Biese said. “They entrust their training to you, and you work closely with them because you want to get to know them and you want them to be prepared to go on in their careers and care for potentially tens of thousands of patients. I’d gotten to know Dave, and understood what kind of a person and doctor he was and what kind of physician he could be, and it was hard to watch this promise he’d shown become so uncertain.”
Throughout his treatments at the North Carolina Cancer Hospital, Carbonell continued to attend regular residency program meetings as a way to feel connected to the program and his peers. As friends from the program graduated and moved on to the next stage in their careers, it grew increasingly difficult for him to stay positive.
“When you have cancer in your 20s, no one else around you has it,” he said, “so it’s hard for them to understand what you’re going through. They are going on with their lives, getting married, moving away. I was watching the peer group I knew from high school and college and the residents from my program move on with their lives. You see the updates on social media – the pictures of kids, the house they built, the people getting married. It certainly made it more difficult to cope with what I was going through. In the worst part of my treatment, I got very resentful and depressed.”
Contributing to those feelings, Biese guesses, was that Carbonell had demonstrated that he was one of the most intelligent and confident physicians in the program.
“Doctors are smart people, but Dave is more than smart – he’s a brilliant guy,” Biese said. “Prior to this happening, he felt invincible and had never felt vulnerable. He was open about that. All of a sudden he had cancer, he was scared, and he couldn’t be the person he wanted to be.”
As Carbonell went through treatments, he tried to channel his energy in positive ways, including by speaking with medical students and residents about his experiences.
“It is a very stressful period of time for these future doctors,” said Carbonell. “They are expected to manage incredibly huge numbers of patients and duties. My message to them was to remember that patients are people, too, not just metrics and numbers and work to be pushed through a system. I encouraged them to stay vigilant and to provide care as they would for someone who is a family member – and to remember that at any point, all the success and hard work they put into their education could be ripped away from them by a terrible and terrifying disease, like what happened to me. By keeping that in mind, they can retain their humility and approach patients humanistically.”
Biese witnessed Carbonell throughout treatment, and he could see that the experience transformed the way the resident physician thought about medical care.
“It helped him see a whole different perspective that hopefully most of us don’t have to experience about what it’s like to be a patient in the system -- and how scary that is and how vulnerable you feel,” said Biese. “And that changed his approach to medicine. And I’m sure it makes him a better doctor.”
During medical school and residency, Carbonell felt removed from the patient experience, approaching medicine from the book or the lecture hall. He read about conditions and drugs and ordered the correct doses for people, without a lot of awareness of how it feels to take that medication or deal with that condition.
“I’m so much closer to the patient experience now,” said Carbonell. “I know what that drug feels like because I’ve been on it. I know what it’s like to lose hope, to despair, or to get bad news. I think all of this helps me treat my patients. I work in an impoverished area with high rates of chronic illness including cancer. Unfortunately, I have to diagnose cancer too often, but the experiences I’ve had as a patient help me have those conversations with patients.”
Today, Carbonell is an emergency room physician at Sutter Lakeside Hospital, a 25-bed hospital in rural northern California. He lives in nearby Marin County, the birthplace of mountain biking, and he coached a downhill mountain bike team for high school students for the last three years.
Two years ago, while mountain biking, he met Caroline Schou, whose brother, Jamie, died in 2014, at age 37, of an aggressive form cancer called Synovial Sarcoma. As he was undergoing excruciating and seemingly endless treatments, Jamie started an organization called Send It Foundation, which provides outdoor adventures for young adults with cancer. His sisters Caroline, Katie, and Margot decided to continue and grow the organization after his death.
“As Caroline and I talked, Send It became something I felt I had to be involved in,” said Carbonell, who is now the group’s medical director. “After getting through my treatments, I felt the isolation and fear as a young adult with cancer, and still do today.”
As a mountain bike coach, an ER doctor, and a young adult who had experienced cancer, Carbonell was the perfect fit for the organization, according to Katie Schou.
“He was just what we needed and we were just what Dave needed,” she said. “He brings the perspective of the patient to the people we’re serving with our program. Meanwhile, he serves as our medical director, and as an outdoors enthusiast, he’s a partner in leading and designing our programs.”
The organization provided six adventures last year -- the first trips since the Schous began the Foundation -- including skiing, mountain biking, and rafting experiences, among others.
“It helps build a sense of community that many of these young people are missing,” said Carbonell. “And it’s helpful for me as well. Cancer is never far removed for me. I understand that ALL can come back and that the treatments I’ve had can lead to other cancers.”
The goal is for these young adults to share their stories with others who understand what they’re facing – and to do so after a day of skiing, on the chairlift, or at the top of a mountain after a climb, rather than in the hospital.
“Because of his experience, Dave is often the one who can initiate those conversations organically,” said Katie. “At the end of each night of one of our trips, we have our fireside chat, where we sit around as a group and talk about cancer experiences. Dave has often already gotten to know attendees by talking with them one-on-one, and he’s often the one who takes the lead to start the conversations as a group. He fills so many roles for us.”
Carbonell hopes that he’s doing his small part to help others on the trip – because he knows he’s benefiting from it through his participation.
“Cancer changed so many things for me,” he said. “Before I got sick I had a lot of plans and was obsessively career-oriented. My illness stripped away a lot of my naivety about emphasizing those things. It put me in touch with the value of my life and what things matter to me. Today, I’d rather invest my time and energy in the things I enjoy doing or in the relationships I have. It’s also given me an appreciation for how I spend my time. Send It allows me to do something to create connection for other people because I don’t want anyone else who’s dealing with this to go through what I went through.”