Christopher Cozby first met the bully he calls cancer in 2013. He was working as a boilermaker and welder on coal-fired trains for the Durango & Silverton Narrow Gauge Railroad, a job he called both “steamy and dangerous” and “the greatest I ever had.” Cozby rebuilt engines constructed in the 1930s and sometimes helicoptered in with crews to repair the “cranky pieces of machinery” when they broke down in snowy terrains of the San Juan National Forest in southwestern Colorado.

A walnut-size lump on the left side of Cozby’s neck proved to be a far greater health risk than any lumbering locomotives. Cozby lived with the painless growth for a couple of years.

“No one seemed to be worried about it,” he recalled.

Then he saw a new doctor in Durango who viewed the lump with alarm and told Cozby it had to be removed right away.

“I hadn’t worried about it,” Cozby said. “I was a train guy.”

But a light switched on when he learned the lump was cancerous and his health and life were in danger.

“Everything came together in that instant,” he said.

The cancer had invaded one lymph node. The surgical team removed it, along with two more —one on each side of that lymph node — and more than a dozen on the right side of his neck. Cozby then endured grueling rounds of chemotherapy and radiation. He tried to return to work on the trains, but the lymph node removal on the right side weakened his right arm so much that he had to go on disability.

Cozby, now 64, lived the next decade cancer-free, then the bully reappeared. In May 2023, cancerous cells developed on the floor of his mouth and tongue, requiring more challenging treatments. Months later, a PET scan revealed that cancer had returned to his neck and also had invaded the middle of his chest and his left lung.

Cozby is well aware that the renewed cancerous attacks mean that time is not on his side.

“I have to pay attention to this,” Cozby said. “Things could go south faster than I can get the help I need.”

For Cozby and many other Coloradans who live in remote areas, cancer care is not always accessible. Cozby lives with his wife of 28 years, Joni, on a mountain in tiny Bayfield, about 20 miles southeast of Durango. The specialized care he began receiving in 2023 is in Aurora, an eight-hour drive away, and requires extended stays in the Denver area.

Help with overcoming cancer barriers

The help has arrived on two fronts. Medically, Cozby has had both surgical and radiation treatments for the tongue cancer at UCHealth University of Colorado Hospital on the Anschutz Medical Campus and the University of Colorado Cancer Center. He is also now receiving immunotherapy for his other, current cancers at the center.

He is also part of a University of Colorado Denver trial designed to show whether dedicated case management can assist patients from underserved rural areas in Colorado with head and neck, lung and other solid tumor cancers in getting the help they need to start and complete their treatments on schedule – a key to recovery.

“Timeliness of care makes a big difference in outcomes,” said Dr. Evelinn Borrayo, associate director in the Office of Community Outreach and Engagement at the University of Colorado Cancer Center and professor in the Department of Community & Behavioral Health at the Colorado School of Public Health, who leads the five-year trial. “Timely treatment improves survivorship, quality of life and mental health.”

The problem is that many cancer patients from rural areas face a maze of barriers that impede getting that timely care, Borrayo said. The obstacles include inadequate insurance coverage, transportation, lodging, language, uncertainties in negotiating complex health care systems, and lack of access to mental health services – not to mention the financial burdens imposed by overcoming any or all of these challenges.

A strategy to coordinate care

Borrayo’s trial aims to enroll 320 patients from 11 Colorado sites, including all hospitals in the UCHealth system. About half the patients will be randomized to receive regular help with adhering to their treatment plans from a care coordinator who monitors and addresses their individual needs. The other half will be randomized to receive a list of resources to consult for help, Borrayo said.

The needs of patients vary, depending on their circumstances, said Carlo Caballero, bilingual patient navigator with the Office of Community Outreach and Engagement and the trial’s care coordinator. Caballero, a licensed professional counselor and certified case manager, plays a point-person role for study patients assigned to receive his services. He contacts them to identify their biggest barriers to care and then tries to connect them to available help from social workers, nonprofit organizations and community resources.

“We try to address [patients’] needs right off the bat to make sure they are able to attend their appointments,” Caballero said.

Navigating a complex health care system

Simply keeping track of and juggling schedules can be a major headache for patients in rural areas who may see multiple providers and need to travel for extended treatments, such as radiation, chemotherapy and surgery, Caballero said. Patients may not know who to contact with questions about the timing of their referrals and how to access treatments that are sometimes based at different hospitals or care sites, he added.

As care coordinator, he said he can help “connect the dots” and resolve the uncertainty with a phone call that confirms an appointment or makes sure a patient’s treatment plan is on track.car

“I think that is important because I know and I have seen how overwhelming the health care system can be for cancer patients. I tell people I’m an extra set of hands for support,” Caballero said.

The mental health component of cancer care

The trial also offers help to patients who face not only cancer but also new or preexisting mental health challenges in resource-short rural areas. A cancer diagnosis can spur feelings of anxiety and depression in patients, which in turn can deter them from getting timely medical treatment, said Elisa Morales, behavioral health program coordinator with the Latino Research & Policy Center at the Colorado School of Public Health, where Borrayo is associate director.

Morales, a master’s level counselor, works with study patients randomized to case management who show symptoms of emotional distress. She provides those patients with up to 10 cognitive behavioral health-centered counseling sessions that are based on a protocol previously developed for another study led by Borrayo. That study tested an intervention designed to improve mental health outcomes in underserved patients with head and neck and lung cancer. The approach produced positive results, indicating that for some cancer patients, good medical care is only one step in their return to health.

“The literature suggests that individuals who face mental health challenges – anxiety, depression, pain, diminished quality of life – tend to have overall worse outcomes than other patients,” Borrayo said. “Our goal is to detect symptoms, even when they are starting, so we can help them with coping skills.”

Tools to help cope with a cancer diagnosis

“Everybody starts at a different place with hearing that word ‘cancer,’” Morales noted. For example, some patients might “catastrophize” their diagnosis, “immediately going to the worst and generalizing,” Morales said. Others might fear treatment because of trauma they saw a loved one or friend suffer. Morales said she employs cognitive behavioral therapy and techniques like deep breathing, mindfulness and meditation attempts to help patients change negative thoughts and cope with their diagnosis.

“Our mental health is essentially our outlook on life. It is being able to adjust the filter and lens from which we see and perceive life,” she said. Patients who take a “healthy mental health approach” with “adaptive coping mechanisms, healthy habits and [positive] patterns of thinking” can transform their experience, Morales added.

“As a result, the patient will often make better choices and decisions, such as being more likely to follow through with medical treatment and care, improve their quality of life, and impact their overall well-being,” she said.

A multi-front battle with cancer

Christopher Cozby enrolled in Borrayo’s trial in April 2023 and connected with Caballero, who pointed to resources that might help with finances, lodging and treatment questions. But Cozby’s experience has been turbulent and illustrates the complexities cancer patients from rural areas can face in battling their disease.

The 2013 surgery in Durango to remove the tumor and lymph nodes from his neck, followed by arduous regimens of chemotherapy and radiation, appeared to free Cozby of his cancer. But the treatments exacted a steep price. In addition to having to quit the railroad job he loved, he developed severe nerve pain in both legs and intense ringing in his ears that cost him much of his hearing.

A decade later, Cozby also discovered cancer wasn’t done with him. In the spring of 2023, he was diagnosed with squamous cell carcinoma that had invaded his tongue and the floor of his mouth. His providers in Durango quickly referred him to UCHealth University of Colorado Hospital, where head and neck surgeon Dr. Julie Goddard removed a third of his tongue to eliminate the cancerous cells. Goddard then rebuilt Cozby’s tongue with a skin graft from his forearm. Another graft, from his thigh, covered his forearm.

Cozby woke up in the intensive care unit at the hospital unable to speak or eat and facing the equally pressing problem of securing lodging for Joni during what turned out to be a one-month stay. Caballero connected Cozby with oncology social worker Rolf Stavig, who said he tapped Cancer Center Patient Assistance funds that covered Joni’s lodging until Chris could leave the hospital.

Stavig’s help with lodging – one of the biggest barriers to care rural patients face, Caballero said – lifted an enormous weight from Cozby’s mind.

“The clouds parted, like the sun warming your face the first thing in the morning,” he said. “Rolf put a human element back into the equation. He took a humanitarian crisis and turned it into a win.”

Challenges mount with another cancer diagnosis

With another round of radiation administered by UCHealth radiation oncologist Dr. Ryan Lanning to clean up any remaining cancer cells in his mouth and tongue, Cozby thought he might once again have faced down his bully. But late last year a PET scan for a suspicious lung nodule “lit up like a Christmas tree,” as Cozby put it. The bad news: squamous cell carcinoma had returned to his neck, and cancer had also spread to the middle of his chest and his left lung.

On the advice of Lanning and his medical oncologist, Dr. Daniel Bowles, Cozby joined a trial of Keytruda, an FDA-approved treatment for patients like him whose head and neck has returned. The drug is an immunotherapy that blocks a particular protein that inhibits the immune system’s ability to recognize and attack cancer cells.

The randomized trial tests the effectiveness of Keytruda used in combination with another drug. Cozby is in the control group, meaning he receives Keytruda alone.

The Keytruda treatments require a regular regimen of infusions in Aurora – an obvious challenge for a Durango resident who will need to return every three weeks for infusions for up to two years. But being in the trial is a huge boon in itself: Cozby said his clinical research coordinator, Brooke Brandon, arranges to have his transportation and lodging paid for and stays in close contact with him.

“Every time I have a question, she has an answer,” Cozby said.

Taking on the cancer battle

Cozby says he appreciates the much-needed help he has received in his tough, ongoing fight with his disease, but he added that it has also been vital that he refuses to shrink from the challenge. As he put it, he “ran to the fire,” rather than from it, when he was diagnosed with cancer.

“My case is moving so fast, it’s hard to keep up with,” he said. “Finding good care is important. I wouldn’t be sitting  here without asking questions and reading and learning. In today’s world you have to be an active participant in your own health care.”

At the same time, Cozby is adamant that people in rural areas too often don’t have the same chance to survive cancer that others do – a point that underscores the importance of Borrayo’s trial.

“People who live in rural areas [with cancer] are in trouble,” Cozby stated. “How do people who don’t have the resources, mentally or financially, or both, get good care? I don’t know how they do it.”

With these challenges, it is easy to get discouraged, Cozby said. But he is determined to face down the bully that has now dominated more than a decade of his life.

“Cancer is a bully, but now it’s made me mad,” he said. “That gives me motivation. You don’t win a round with cancer [if you are] curled up in the fetal position.”