Bruce Stahlman and wife Kelly had rightly hoped that their decades-long immersion in the U.S. health care system might end with the lives of their twin sons in 2014 and 2015. Mark and Eric had been born 12 weeks premature in 1992, and long neonatal intensive care unit stays presaged two decades of frequent hospitalizations. Their severe cerebral palsy and accompanying health problems had led to the remodeling of the Stahlmans’ Littleton home a sort of hospital unto itself, complete with lifts and nursing care.
It was not to be. In August 2018, Bruce, then 61, found himself nodding off at dinners and occasionally losing his balance despite him being a runner and capable of knocking out high-intensity Orange Theory workouts.
Kelly’s instincts, honed over more than 20 years of caring for their boys, told her something was off. She talked to the neurologist who had long worked with her twins and then scheduled an office visit and an MRI for her husband. Bruce obliged but drove in his own car to the MRI appointment so he could head straight to his job as chief financial officer for ARC Thrift Stores afterward.
He headed to an intensive care unit instead.
The scan revealed a brain tumor the size of a racquetball. The pathology report after its successful surgical removal showed it to be glioblastoma multiforme (GBM). It’s a killer tumor, one that accounts for about half of all brain tumors. Each year, about 13,000 people in the United States are diagnosed with one and about 10,000 people die of one. The average patient survives about 15 months even with the surgery and the follow-up radiation therapy and chemotherapy regimens Bruce subsequently went through. The average five-year survival rate is 6.8%.
Optune device for brain cancer
Kelly drove home to take care of a few things after the scan. She had buried two of her three sons – Jay, her oldest, was arranging to fly in to help out. Now her husband had brain cancer. She realized: “I’ve been here before. You can either go through the trauma of trying to understand something that’s not understandable or say to yourself, ‘OK, it is what it is – now what?’”
For Bruce, the answer to “Now what?” was a decision to live. That, too, was at least in part a response informed by his experiences with his twin sons. Dottie Mann, a friend of the Stahlmans who is a chaplain at UCHealth Highlands Ranch Hospital, had once told them that end-of-life was not about how you die. It’s about how you want to live until you don’t.
Fifty-two months later, Bruce is still living. He and Kelly credit two big reasons. One is the Novocure Optune device he wears an average of about 21 hours a day. The other has to do with both the head and the heart, and that’s deliberately maintaining a positive outlook whatever the circumstances.
Bruce put it this way: “You can’t stop the waves, but you can learn to surf.”
Some of the waves Bruce now surfs are electric. The Optune device delivers low-intensity, 200-kilohertz, alternating electric fields into Bruce’s brain via 27 electrodes stuck about his head. The electrodes get moved every two days to prevent the irritation of a scalp Bruce now keeps clean-shaven.
“I’ve had to take off my Fabio locks – which is brutal – but unfortunately, it needs to happen,” Bruce said. On the bright side, shortly after returning to the office with a clean-shaven noggin, he said, “my teammates took my nameplate off the door and put ‘Vin Diesel’ on it.”
A cable bundles the electrode wires behind his head and snakes them to a battery and controller he wears as shoulder bag.
Optune device proven to slow brain tumor growth
The system has been proven to slow the growth of GBM tumors, explained Dr. Douglas Ney, the University of Colorado School of Medicine neuro-oncologist who prescribed Bruce the Optune and continues to lead his cancer care.
“The alternating electrical fields, which penetrate into the brain, largely affect only the rapidly dividing cells, which are going to be the glioblastoma cells,” Ney said. “They disrupt the cells’ ability to go through mitosis, which is the way cancer cells divide.”
Ney and his CU Neurology colleagues have been working with the Optune device since before the U.S. Food and Drug Administration approved it in 2011, Ney says. The CU team participated in the clinical trials at UCHealth University of Colorado Hospital on the Anschutz Medical Campus (UCH) that led to the Optune’s approval. Ney estimates that hundreds of UCHealth patients have subsequently used the device, with an average prognosis of about 21 months.
Bruce has more than doubled that, making him, as Ney put it, “an outlier.” The reason may be biological – Bruce’s GBM could simply be more vulnerable to the Optune’s electrical insults than the tumors of many patients. But some of it is probably psychological, Ney says.
“I think the wonderful attitude and approach to this diagnosis that they have has really gone a long way in how well he’s doing,” he said. “I think, because of their history, they have a really deepened approach to addressing adversity and life circumstances that can really bring you down. That plays into this as well.”
As Optune device wearer, Bruce is paying it forward
“They,” in this case, are Bruce and Kelly, whose affinity for one another is hard to miss. Often, it manifests through a shared sense of humor. Example: When describing Optune’s side effects (negligible), Bruce added, “Of course, I can now read everyone’s thoughts.”
“Everyone’s except his wife’s,” Kelly qualified without missing a beat.
“I can read yours, too, but I just don’t want to let on,” Bruce said.
There’s more to Bruce’s relative longevity than the Optune and the positive attitude, of course. He also lists faith, science, nutrition, exercise, a doctor you trust, and friends and family. On the family front, son Jay and his wife Tsvetelina have moved back to metro Denver with sons Max, 4, and Theo, 6. On the exercise front, he’s back to running (for this he removes the Optune) and did a 10K in Littleton in late October and a 5K turkey trot in California over the Thanksgiving holiday.
Bruce continues to work his day job at ARC Thrift Stores. He and Kelly, longtime healthcare and disability-services advocates, have added cancer-related advocacy to a volunteering portfolio. Bruce gives public talks, and he and Kelly are active in the monthly UCHealth Brain Tumor Support Group. They’re also working with Novocure’s public affairs staff to speed up the approval and Medicare coverage for Optune-like devices suited to ovarian, pancreatic, and non-small cell lung cancer.
“First and always, it’s about gratitude,” Bruce said. “It’s all about how we pay forward all the support and help that we got through our journey, certainly with my diagnosis, but also with Mark and Eric.”
They are grateful for the care they’ve received at UCH.
“We chose Anschutz as our center for care after looking at all the options,” Kelly said. “It’s a center of excellence, we loved Dr. Ney, and we really trust UCHealth. That speaks volumes.”
The waves will keep coming. Bruce Stahlman plans on surfing them – and on living how he wants to live until he doesn’t.