Portland rockers rally around musician’s fight with leukemia.
Boxes. Every room was filled with cardboard boxes – a rectangular riot of books, records, photos, tools, kitchen stuff and music gear. The furniture was covered with drop cloths and the tang of fresh paint hung in the air.
Rock musician Tony Hilsmeier had saved for years to buy this little house in Northeast Portland, working extra shifts waiting tables at Serratto restaurant and hustling a side job at the airport. Now it was finally his. He’d stayed here just three nights.
He should have bounced out of bed this morning, but he couldn’t summon any energy. He couldn’t lift a single box. He was short of breath. Truth be told, he’d been feeling bad for weeks, but kept pushing through, putting it out of his mind. Today he’d run out of excuses. He was utterly exhausted. His ankles were so swollen he could barely walk. He pulled on his boots and stumbled out to the truck in the early-morning darkness.
“I knew something was really wrong with me,” he says.
What do you do when life throws you a curveball? When all your plans, all your dreams, all your hopes, are suddenly eclipsed by a dark star with so much emotional mass that it warps space-time and swallows everything you’ve ever known?
This is the story of a rock musician and his battle with cancer. On one level, it is a fight against something: a relentless type of blood cancer named acute myeloid leukemia. But Tony is also fighting for something. He is fighting for his house, his friends, his dreams and his music.
His determination has inspired his care team at the OHSU Knight Cancer Institute and his friends and fans in the music community, who have banded together to support him. They’ve launched a fundraising drive and they’re holding a benefit concert for him at the Lollipop Shoppe on July 20.
No one can say how the story will turn out, but one thing’s for sure: Tony and his crew put it all on the line.
“Half measures avail you nothing,” he says. “That’s what I tell myself. Keep trying. Keep digging. Don’t give up.”
Born a fighter
Tony was born a fighter. Raised by a single mother, he grew up in Houston, Texas, in a gritty industrial landscape. Punk was his religion. He left home at 15 but stayed in high school. He loved English and drama – he played Stanley Kowalski in A Streetcar Named Desire. He also played football, developing his “warrior spirit” and formidable gaze. After high school, he put himself through the University of Houston by waiting tables.
He moved to Portland in 1998, bought a guitar and a four-track, and taught himself to play. He was in a string of bands: The Soft Rock Renegades, the New Ruins, Go Fever. He sprouted muttonchops and styled himself in vintage clothes from Avalon Antiques. They played clubs like Cobalt Lounge, Medicine Hat, Rabbithole and Satyricon.
While his music career was taking off, however, his personal life was collapsing in a spiral of alcoholism and despair. Onstage he was a rock icon playing big shows and opening for national acts. Backstage he was a marionette propped up by booze and pills. He kept a whiskey bottle by the bed. His weight ballooned to 236 pounds on a 5’ 9” frame. He had nightmares, tremors, paranoia and panic attacks.
Finally, on April 2, 2015, he had a sort of out-of-body experience. “The spaceship landed,” he says. “I woke up into a light that enveloped me.” He quit drinking and began the long, hard journey of piecing his life back together. After 32 years of partying, he had to relearn how to live. But desperation was a gift. He swam, ran and lifted weights.
“I made it a Star Trek mission,” he says. “I became the hero of my own movie.”
A puzzling rash
By the fall of 2022, Tony was on a roll. Fit, strong, and sober, he was back playing guitar and recording tracks. Scrimping and saving, he scraped together enough cash for a down payment on a house in Portland’s Cully neighborhood.
That house was a milestone in his life. Some folks doubted that a rock musician in his fifties could afford to buy a home when prices were so high. “I took a lot of grief from people who said I couldn’t do this,” he chuckles.
Then one day he noticed a strange rash on his shin. Both shins, in fact. And both calves. He tried ointments and lotions. Nothing worked. The dermatologist was puzzled. A few weeks later, by the end of his shifts at Serratto, he found himself running short of breath. And then there were the bruises.
He tried to push through the pain and focus on the myriad details of buying a house: the mortgage, the interest rate, the title, the escrow, the plumbing, the wiring and the paint. By the time he finally moved in, however, he felt worse than ever. He could barely lug the boxes in from the truck. On the third night, he went to practice with his new band, then collapsed in exhaustion.
The next day, he dragged himself to the emergency room at OHSU. They took some samples and ran some tests. Pretty soon Curtis Lachowiez, M.D., sat down next to him and gave him the news. Deep in the marrow of his bones, mutant blood cells were taking over, drowning out the normal cells in a froth of chaos and dysfunction. The cancer cells were thickening the blood in his veins, choking off the oxygen that his organs craved. They would keep on multiplying, and they would not stop.
“That was the moment of truth,” Tony says.
Ready or not
Acute myeloid leukemia is an aggressive type of cancer. No one is sure what causes it. But somewhere inside his bones, something went wrong. The bone marrow, the factory that manufactures blood cells, had malfunctioned. It was churning out defective blood cells that couldn’t do their job. And those cells were stealing his oxygen, turning his blood into a useless red slurry. That was the cause of his fatigue, the bruises and the swelling.
He needed treatment at once, Dr. Lachowiez said. It would be long and painful. And there was no way to predict the outcome. Was he ready for this ordeal?
Lying there on a hospital bed, strapped to the machines, Tony paused for a moment. No one is ready for cancer. “I had to make a decision,” he remembers. “So, I decided to go for it. We’re going to lick this thing. We’re going to save the house and beat this cancer. I choose to live. And I choose to do anything I can to get out of here alive.”
They wheeled him up to the 14th floor. He spent the next four weeks on the cancer unit. The doctors started him on a course of intensive chemotherapy. He lost his hair. He even lost his eyebrows. “I look like a space freak,” he says. The chemo seemed to be turning the tide. He went home for a few days. Then the doctors found cancer in his spinal fluid.
The news was devastating. But Tony still had hope — and a plan.
A novel treatment and a second chance
Chemotherapy has been the frontline therapy for AML for years, even decades. It works well for many people, but it doesn’t work for everyone. Until recently, if chemotherapy didn’t control your AML, you had very few options. Your lifespan was typically measured in months.
In 2018, however, the FDA approved a promising new AML drug named venetoclax. Venetoclax homes in on cancer cells and strips them of a key protein that helps them live longer. That slows the cancer down and makes it more vulnerable to other drugs.
Early evidence showed that the drug could help older patients who weren’t able to do intensive chemo. But some researchers suspected that venetoclax might also be able to help younger patients whose cancer had come back. One of them was Lachowiez, who has co-authored several articles about the drug in medical journals.
In 2021, Lachowiez worked on a clinical trial to investigate whether venetoclax could help patients whose AML had come back after chemo — patients in Tony’s situation. With venetoclax, the study found that 70% of the patients achieved complete remission: the cancer was gone.
Venetoclax is a newer drug whose side effects aren’t fully understood, but it was the best option on the table. Tony agreed to give it a shot. He went on the venetoclax combination therapy and spent another 33 days in the hospital.
The results were impressive. By the end of his treatment, the cancer cells had vanished. His blood was working again. But while the drugs killed the cancer cells, they didn’t fix the problem with his bone marrow. For that, he would need a stem-cell transplant from a living donor. None of his relatives matched his blood profile. Then he caught a lucky break: he was matched with a 24-year-old donor whose stem cells were the perfect fit.
Working with transplant physician Jennifer Saultz, D.O., he got the stem cells in June. The procedure itself only took 30 minutes, but stem-cell transplants disrupt your immune system until your body has a chance to integrate the new cells. He spent four weeks in the hospital and will have ongoing infusions for months.
Some days are hard. Some days the “what ifs” swarm through his head. What if he can’t hold down a job? What if he loses the house? And the big question: What if the treatment doesn’t work?
His doctors always have the same answer: If it doesn’t work, we’ll try again. “My doctors have been amazing,” he says. “They believe in me.”
“Tony is an inspiration and I am truly grateful to have the chance to take care of him,” Dr. Saultz says. “He is tough and has grown so much during this process.”
Throughout the ordeal, he’s been lifted by a remarkable outpouring of support from his friends in the music community. “This cancer fight for my life has taken me to some dark places, but I believe in miracles,” he told Willamette Week. “I keep myself positive with the help of my incredible medical team at OHSU and the love and support of my friends, loved ones and community.”
Melody, Dylan, Michael, Dale, Tyler, Jamie, Mike TV, Zia, Monica, Jaymee, Erin, Alissa, Malia, Bree. “Without my friends, I’d be dead in the water,” he says.
Nothing about this has been easy. Tony’s advice? “Love life. Go for it. Keep the wonder. Find things to love. Appreciate the trip. Don’t lie around in the malaise. It’s up to you to bring the party. Every day is a holiday, and every night is a Saturday night.”
Catch up with Tony