In grim leukemia battle, young man just kept going

Alarming complications cropped up, but nurses offered 'sense of community'

Josh Sanborn plays his guitar.

More than once, Josh Sanborn thought he would die soon.

His body, which he had strengthened into a power-lifting machine, suddenly failed him. And then it kept failing him, in frightening ways.

In surviving, though, he found sources of strength that didn’t require barbells — a real strength to just keep going.

Shocking diagnosis

At 28, Sanborn had been training, eating a lot and getting really strong. So he was puzzled why his maximum weights in power-lifting started going down — a lot. He was tired, too.

Then he had symptoms of what he guessed was mononucleosis. He had chills, sweats, vomiting and a headache for more than a week. When he saw a doctor, his blood test resulted in a referral to Ammar Alzoubi, M.D., at Sanford Roger Maris Cancer Center in Fargo, North Dakota.

When Sanborn soon saw Dr. Alzoubi, he received a diagnosis that shocked him: “You have some form of leukemia.”

“I sat there and cried for 10 minutes,” Sanborn said. Facing acute lymphoblastic leukemia, a cancer that starts in cells that normally turn into blood cells, he realized his life was about to change dramatically. If not treated, this type of leukemia can be fatal within a few months.

Learn more: How Sanford Health cares for cancer patients

After an immediate bone marrow biopsy, he was placed on fluids, then had surgery the next day to get a port placed. Soon after that, he started receiving IV chemotherapy treatments.

Sanborn ended up staying in the hospital for more than two months because he developed a rare autoimmune disorder called Evans syndrome. In this syndrome, the immune system attacks red blood cells, white blood cells and/or platelets.

Every time Sanborn would get a blood or platelet transfusion — sometimes he received six or seven a day — his body would attack the cells.

“My platelets were always super critically low,” Sanborn said.

Between the chemo and Evans syndrome, his body was sicker than almost anyone can imagine. Vomiting and in pain — “It felt like my bones were breaking” — he also had diarrhea and night sweats.

But chemo represented his only hope to live another year.

‘Well, I’m probably gonna die’

Among other complications, Sanborn had emergency nasal surgery when bleeding wouldn’t stop because of Evans syndrome. He had a fungal infection in his blood. He also had a staph infection inside his leg bone that needed to be cleaned out, and his leg was then immobilized for a couple of months.

Removal of Sanborn’s spleen helped resolve the complications of Evans syndrome. But during that surgery, doctors discovered a fungal infection on Sanborn’s liver that required treatment.

“I don’t know how many months I was like, ‘Well, I’m probably gonna die,’” Sanborn said.

One thing that didn’t happen with chemo: He didn’t lose any hair. And he has a lot of hair. His friends joke that the hair on his back and upper arms look like a shirt. So when they came to see him, they teased, “Man, chemo can’t even kill your shirt, huh?”

Nurses ‘always made me feel better’

Until his diagnosis, Sanborn had been used to dealing with hardships on his own. “I internalized it,” he said.

“I didn’t want help. I want to sit, just figure it out on my own. And most of the time, that’s worked throughout my life. Not with everything. And it couldn’t work with cancer.”

Facing a steady stream of medical staff in and out of his hospital room wouldn’t have been his wish. But when he attempted to explain how much nurses can mean to patients, the tears spilled over.

“Some days I felt really, really crappy when I was going there, but they always made me feel better,” Sanborn said.

“They’re on my team, and you have that overwhelming sense of community and connection with people. And it’s like that’s what I needed. And as much as I want to say, ‘Go away. I wanted to deal with this on my own,’ I need people, and they don’t judge.

“You know, I love them a lot,” he said. “They really mentally saved me.”

Sanborn knew he could rely on a couple of good friends, too, when he needed to talk about how he was doing, how he was feeling. People he could be completely honest with and not feel judged. People who kept calling and texting, even if they didn’t get a response.

“And the one time that I pick up and the one time I call back, they’re there, and I needed that,” he said. “So that was huge, just to have those couple people in your corner.”

Back to living again

After receiving IV chemo for a year, Sanborn is now on a maintenance, less intensive oral form of chemo. He’s also on immune boosters because he has no spleen.

But he’s finally feeling healthy again. He’s reflecting on what he’s been through. And he’s enjoying life.

Sanborn finds himself more accepting and less judgmental of people than ever. “You really don’t know what anybody else has ever gone through,” he said.

Grateful for other people’s support, he’s finding ways to give back. For example, to friends who once sought donations on his behalf, he suggested helping someone else now. “So we just picked a kid.”

Related: Ways to help recover from chemo, and how long it takes

Sanborn also is back to embracing things he loves to do. He’s lifting weights again. He’s also playing guitar.

A bassist for years, Sanborn had just started playing guitar a few months before his diagnosis. But chemo brought playing to a halt when it numbed his hands and made them hurt.

He’s a heavy metal fan, and “music has been a huge part of my life forever.” But he found he couldn’t even listen to music for several months while he was sick, especially in the hospital.

But at home, after he started listening to music again, he discovered he could play again, too. “I would just be feeling like crap, but I could just go sit and play guitar … and just forget that I felt like crap,” he said.

“Some of those real dark days in the hospital, it felt like an eternity,” he said. “I remember not being able to sleep and feeling myself die, and I’m just watching the clock.”

But pulling through those moments gives Sanborn’s advice for others authentic depth: “Don’t give up. Just keep going. Because you’ll get to the other side eventually.”

More stories

This is the latest in a series called “We’re In This Together,” videos and stories from everyday patients going through cancer treatment at Sanford Health. Get an idea of what to expect from cancer survivorship — follow along to their appointments, and see a glimpse of the support in their lives.

Posted In Cancer, Cancer Treatments

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