Steve Rubin defies odds and uses his passion to help other young adults with cancer

2013 07 16 Steve Rubin

Submitted photo

By Angie Barrington

Steve Rubin always had an active lifestyle. He played hockey and baseball when he was younger, had a good run as a climber and mountaineer, and turned to kiteboarding after moving to Victoria, BC when there were fewer opportunities to climb regularly.

He was diagnosed with Hodgkin’s Lymphoma in October 2011, and his healthcare team advised him to stay out of the water to protect his compromised immune system.

“I [stopped] for a few months, and I was so miserable…the depression that I experienced during that break—to be told that I couldn’t do it because of these reasons—really had me down in the dumps for a long time,” he said.

Exercise is known to release endorphins and relieve stress, and extreme athletes get particularly used to the hormones released during activities. Being forced to quit can lead to depression and dissatisfaction due to changes in the body’s regular chemistry.

So, with the help of his friends, Rubin went kiteboarding. “I understood the risks, but I didn’t feel like it was worth the level of misery I was in to not go out there. I probably shouldn’t have, but I went out there anyway.

“[My friends] were so petrified because nobody knew what was going to happen, nobody knew if this was a horrible idea or not. I was very, very weak. I remember feeling like my legs were on fire.”

Despite the pain and shaky start, the weather was perfect for kiteboarding the next day, so he went out again.

“When I checked into the emergency one night because my arms were hurting so bad and they were asking what was going on and I explained to them, ‘Oh, I just overdid it kiteboarding today and I had treatment a couple of days ago and I’m in excruciating pain; my veins are really a mess.’

“They were giving me a big dose of morphine and it didn’t do anything. They explained to me that the pain was from swelling in the veins and morphine doesn’t have any anti-inflammatory properties, so I just had to live with it. No regrets, though. I’m happy I was out there.”

He said his doctors said they had never seen anyone like him, and he learned if he waited to kiteboard on the week he didn’t receive treatment, he didn’t have as much pain, so he would take every other week off.

Finding motivation and setting expectations

“[Kiteboarding] let me totally escape the day-to-day misery and suffering, and a lot of that was emotional and intellectual. I was really thinking a lot about the changes my body was going through and all of this stuff. I had always been healthy and active, and now, all of a sudden, I’m getting pumped full of all of these toxins and all kinds of weird stuff’s happening to me and I was really scared for a long time. It helped me let go of that fear, just by giving me a break from it for an hour or two at a time. I recommend to other people to find something that lets them escape from that fear for a little bit here and there; it’s got a really amazing effect.”

Rubin thought he was done with cancer after treatment and went on a trip with his wife. While away from home, he got a call saying he was going to need a stem cell transplant.

He says the chemotherapy regimen he was treated with in order to prepare his body for the transplant was particularly difficult and made him very weak. Nevertheless, with the transplant scheduled for late March 2013, Rubin was still kiteboarding in the early part of the month.

His medical team advised him he could be recuperating in bed for three or four months after his transplant, but he couldn’t wait that long.

“I had the line removed, then a week later, the stitches came out, and then the next day, I was out kiteboarding. It’s really not what we were told to expect at all and I don’t really know what to tell you because I think most people just listen to the doctors when they tell you what to expect, and so that’s what happens.

“I remember just leaving the beach and I did a double back flip right away and stayed out for two hours. I promised my wife that I would just go for 20 or 30 minutes—you know, not overdo it, or anything—and two hours went by, I came back in satisfied and feeling great, and I couldn’t believe two hours had gone by.”

Looking out for other young adult survivors

Rubin says during his first diagnosis, he recognized a need to seek some sort of rehabilitation program once treatment was over since his body had been through so much and the last year of his life had been focused on cancer. “I related [treatment] best to drug or alcohol abuse where people go off to these lavish detox rehab facilities and have such amazing experiences that are able to change their lives. So, I identified that I needed to do something like that for myself.”

He and his wife, Michelle, looked for post-cancer retreats that specialized in things from nutrition to counseling, but he couldn’t find anything that worked for them.

“We started looking in to it, and I made lots of phone calls. I found that there were lots of these types of places that specialized in that specifically and I’d say my average conversation was like, ‘Yeah, we’d love to have you. It’s only $5,600 for a four-day retreat; come on down to Hawaii’ and I remember just asking these people, ‘Who shows up at these things? I just had to take almost a year off of work and there’s just no way that that’s happening for me.’”

During his recurrence, he heard about an organization called Athletes for Cancer. The organization offers free adventure therapy camps for young adult cancer survivors, which was what he was searching for originally. Coincidentally, their biggest fundraiser is Kiteboarding for Cancer, a 100-mile endurance race where approximately 200 athletes raise money to fund their camps.

“I had been kiteboarding for many years, I’m totally passionate about it, it helped me so much throughout my experience, and they’re raising money for something I couldn’t find when I needed it,” he said.

On July 13, 2013, not even four months since his stem cell transplant—a time period in which his medical team predicted he’d still be lying in bed—Rubin will spend an estimated six hours on the water to make sure other young adults in situations like his can find the support they’re looking for.

Want to learn more about Steve? Read his survivor profile, or check out this great video where he talks more about kiteboarding through cancer, and takes you on a short ride.

YACC’s Retreat Yourself Adventure is coming up from August 14-19! The program is free, but you are responsible for your travel to St. John’s. Travel assistance may be available.

Tags: , , , ,