The dizziness came first. Then Steve Adams Jr. began to feel “strange smells” like sulfur that weren’t really there. He also felt numbness in the back of his head and neck, and suddenly started needing glasses to drive.
For about a year, she complained to one primary care doctor and then another. Each ordered basic blood tests that always returned to normal. A doctor told Adams that the symptoms were likely due to stress and anxiety, and sent him to a psychologist who gave him mood stabilizers.
“I was getting frustrated because I kept going back to them, telling them about my situation,” said Adams, 34, who lives in Hudson, New Hampshire.
But when an excruciating headache hit when he took his daughter to a trampoline park in August 2017, he pushed for more testing.
“Steve had to be his own defender and really argue to get a scan. He said, ‘Something is not feeling right, I want my head scanned,’ ”recalled his wife Gillian.
CT scan revealed a mass so large that an ambulance took Adams directly to a local hospital and then to a medical center in Boston. Doctors were surprised that he was still walking, talking, driving and living a relatively normal life up to that point, the couple said.
The diagnosis: Glioblastoma, a rapidly growing aggressive brain cancer that comes with a bleak prognosis – most patients survive only 12 to 18 months, according to the National Brain Tumor Society. It can affect anyone, at any age, and it can affect cognition, mood, behavior, and all body functions. Treatment is difficult since glioblastoma develops tentacles in the brain instead of forming a solid mass that doctors can target and remove.
But there are survivors like Adams who offer hope by beating the odds. Three years after her diagnosis, she feels “fine,” she said. Doctors removed as much of the cancer as possible during the surgery, and received radiation and chemotherapy. Adams’ tumor has a certain mutation, called IDH-1, that makes it more sensitive to treatment.
Adams still lives with the remnants of growth, so his brain is regularly monitored by scanners. He also uses Optune, a cap-shaped device that sends a low-dose electrical current through the brain, 22 hours a day to try to slow the growth of the remaining tumor cells, his wife said.
Dizziness and strange smells are gone, though they can occasionally come back when Adams tries too hard. He was able to return to work a year after his brain surgery, joining his employer’s sales department instead of staying in the warehouse due to a risk of seizure. He is currently suspended due to the pandemic, but said his company’s support has been an important factor in getting life back to normal.
Since the couple was trying to have a baby when Adams was suddenly diagnosed, doctors suggested sperm storage before starting chemotherapy and radiation. Last year, the couple welcomed a baby thanks to IVF. They also bought a new house.
The family is determined to make the most of every moment, regardless of the prognosis.
“(The doctors) said it could be one to five years, it could be 10 years, we just don’t know because these types of tumors have a very strange way of behaving. It can be stable for so long that suddenly something will happen and suddenly it will start to grow rapidly, “said Gillian.
“Always stay positive,” Adams advised other glioblastoma patients. “That’s all on my mind: I always have a smile on my face. Use your support teams: family, friends. Don’t be afraid to ask questions about what is happening to you. Be your best advocate. “
