Ivy Blog
Park Ranger, Author Navigates Wild Terrain After Glioblastoma Diagnosis
In New Mexico, during the summer of 2023, Jeff Muse’s world changed. While serving as a park ranger and publishing his first book, he went from protecting public lands to uncharted territory when he was diagnosed with brain cancer. Jeff, 56, now in a clinical trial at the Ivy Brain Tumor Center, has found a way to navigate each day. He calls it “an equation for life.” Not a cure, not a solution, just a path—simple, hard-won, and very personal.
From agony and endurance to comfort and pleasure, Jeff navigates each of these steps every day. They are his new map with routes that guide each well-lived moment.
‘An Equation for Life’
Agony, every morning begins with a stark and honest recognition of the agonizing reality of glioblastoma, the most common and most aggressive form of brain cancer. Despite this, Jeff is unwavering in channeling endurance. Jeff asks himself, “But terminal when? Not today!” No matter the odds stacked against him, he is filled with love and gives love, particularly to his wife and mother, his primary caregivers. With them, he remains determined to soldier on through daunting cancer treatments and harsh side effects. Comforts, such as plentiful sleep, a precise diet, and endorphin-inducing exercise, are essential components to his equation. Jeff finds his grit through these comforts, facing each day with renewed strength. And with that strength, he seeks pleasure through activities like exploring outdoors, sharing his memoir, and writing another! Jeff believes that by moving through each of these steps, he can reach feelings of joy, hope, and even optimism.
“For me, it comes down to that daily equation: agony, endurance, comfort, pleasure. So, I hit the trail. I hike—physically, mentally, even spiritually—both with and without others, be they human or non-human life.” Jeff continues, “Plus, I eat and sleep as healthfully as I can. I seek teamwork for diverse healthcare needs. I keep learning and growing. GBM may be ‘bad luck,’ as many say, but here we are, navigating wild, wild terrain and helping others do the same.”
A Life-Changing Diagnosis
In Spring 2023, Jeff’s symptoms began with vision changes. His eye doctor prescribed stronger glasses, and though his sight improved, it still felt “out of balance.” He became forgetful, repetitive, and nauseated. With a metallic taste in his mouth, he also noticed that the hair on one arm would bristle, while the other stayed still. He later learned this was a form of seizure. It was an eerie asymmetry to his body that he could not explain. Then he began waking up with headaches.
Unable to shake the feeling that something was very wrong, Jeff visited his primary care physician, who sent him to an emergency room in Santa Fe. In the hospital, he underwent an MRI, which revealed a large mass in his left temporal lobe.
Jeff received a prognosis of six to 12 months, recalls Paula, his wife, who was also a park ranger. “You’re just in so much shock,” she says. “I was traumatized.”
Jeff’s mother, Sue, who traveled from his home state of Indiana, along with Paula, immediately began investigating brain cancer treatment centers. They found the Ivy Brain Tumor Center at Barrow Neurological Institute in Phoenix, Arizona. The Ivy Center is the largest early-phase brain tumor drug development program in the world, specializing in individualized experimental therapies for patients with aggressive brain tumors. Jeff’s family knew that they had to get him there, but he was in no condition to fly commercial. With financial help from family and friends, and a significant withdrawal from their own savings accounts, Jeff and his mother chartered a medical transport jet. Within hours, on July 7, 2023, the day before his birthday, Jeff was in surgery to remove the brain tumor.
“Jeff’s initial surgery was undertaken by one of our Ivy Center neurosurgeons, Dr. Andrew Little, who specializes in brain tumors. These are delicate operations that require the experience and expertise of a surgeon dedicated to this patient population. At that moment, our genetic analysis of his tumor revealed a vulnerability that we started preparing to exploit in the future, should the tumor recur,” says Nader Sanai, MD, the director of the Ivy Center and chief of neurosurgical oncology at Barrow.
After surgery, Jeff began neuro-rehabilitation for mobility and speech deficits. His medical team was surprised at his quick recovery. As a National Park Service ranger, Jeff was in excellent shape before surgery. He regularly hiked and backpacked for miles through rugged, biodiverse landscapes.
Nature has always been a place of solace for Jeff. Before his cancer diagnosis, he shared his experiences as a wilderness ranger, along with stories from his childhood, in his memoir Dear Park Ranger: Essays on Manhood, Restlessness, and the Geography of Hope.
After brain cancer treatment, Jeff was no longer able to work as a park ranger, but he still spends much of his time outdoors—always keeping in mind to find joy from his equation for life.
Finding Hope at the Ivy Center
A harsh reality of glioblastoma is that even with standard-of-care therapies, the tumor often returns. According to the Central Brain Tumor Registry of the United States Statistical Report, over 90 percent of patients with glioblastoma will experience a recurrence.
Sixteen months after Jeff’s initial surgery, a surveillance MRI showed the tumor again taking shape in his brain. This time, Jeff, Paula, and Sue had learned a lot about glioblastoma treatment and knew a clinical trial was their best option. They hired a clinical trial navigator to find every trial for which Jeff qualified and visited the top research centers around the country, ultimately leading him to the Ivy Brain Tumor Center.
Jeff enrolled in an Ivy Phase 0/1 clinical trial designed for patients tumors harboring an EGFR gene mutation. A few days before his surgery, Jeff began taking the trial drug, Silevertinib (BDTX-1535), developed by Black Diamond Therapeutics. The trial was fast-paced by design, but every step carried weight. Then, Dr. Sanai performed an intricate surgery to safely remove new tumor recurrence. The next steps would determine the drug’s future—and Jeff’s. Within hours of surgery, Jeff’s tumor tissue was tested to see if the drug reached the tumor and modulated its molecular target. Within 10 days of surgery, Jeff knew that it had and, with it, had identified a path forward. He resumed treatment with Silevertinib, now at a higher, therapeutic dose. This was not just a clinical milestone; for Jeff and his family, it was a moment of hope grounded in evidence.
“The appearance of an EGFR mutation in Jeff’s tumor provided us a window of opportunity to target a ‘driver’ of his tumor’s growth. Silevertinib (BDTX-1535) is a fourth-generation EGFR inhibitor with unique properties, particularly well-suited for glioblastoma. The Ivy Center team mobilized rapidly and, as I prepared to reoperate on Jeff’s tumor, pairing this experimental therapy with his planned craniotomy – a complex task that has become routine at our program,” says Dr. Sanai.
Regarding the Silevertinib (BDTX-1535) clinical trial, Jeff says, “I am thankful surgery on my recurrent tumor was possible and that the drug was able to reach the tumor.” Jeff expressed his appreciation for the Ivy Center’s efficient, measurable results and innovative drive, generating hope, noting, “I had confidence that, if I didn’t biologically qualify for ongoing treatment in this trial, we would adapt and initiate care in another way.”
Sharing His Story
Although Jeff can no longer work as a park ranger, he remains devoted to the conservation of our nation’s national parks and wilderness areas. And he still thinks like a public servant. His new goal? To tell his story and work to demystify cancer—perhaps with another book.
Jeff shares his advice with others facing a GBM diagnosis: “Let it rip! Anger, sadness, fear—whatever you experience. Your shock and unexpected pain are real, but so is laughter, cheering, and feeling so driven by purpose and grit that you just might be more thankful for life than ever. All in one day!”
Written by Jennifer Keeler