February 5, 2013 | by Roberta Nichols
As a veteran Los Angeles city firefighter, Gus Perez thought he had experienced it all – “from bringing people into the world to seeing them leave this world – and everything in between,” including the L.A. riots and the Northridge earthquake. Ten years ago, however, he was blindsided.
Applying for a transfer to the Hazardous Materials Unit in San Pedro, the 41-year-old Mission Viejo resident showed up for the routine physical expecting to ace it. After all, he had mastered the rigorous demands of firefighting for nearly 15 years, he and his surfboard regularly rode the waves – and he felt healthy and strong. Instead, abnormal blood work discovered during the physical led to an unbelievable diagnosis: chronic myelogenous leukemia (CML).
Perez came to City of Hope under the care of David Snyder, M.D., associate chair of the Department of Hematology & Hematopoietic Cell Transplantation.
He began receiving the drug Gleevec, which put him into remission. Given the drug’s success, he almost resigned himself to staying on it, yet was drawn to a riskier option: undergoing a bone marrow transplant. That was the option that represented his best chance at long-term survival.
“In my case, there was a treatment, then there was a cure – and for me, the cure was wiping this disease out and starting a new life,” he said during a 2009 interview for ThinkCure.
No one in his family proved a match, so a search for a compatible donor began through the National Donor Registry Be the Match. It was a stressful year of “peaks and valleys,” recalls Perez, as he heard about potential donors who didn’t work out. Finally, a donor was found in Wichita, Kansas, and in August 2004, the harvested stem cells were flown to City of Hope and infused into Perez.
In 2007, he got the chance to meet his donor when Jesus Soto came to Los Angeles for a fundraising event for City of Hope. “It was a powerful moment,” recalls Perez of the encounter. It was equally overwhelming for his family. “On the last day of his visit, we had a big barbecue at our home with all of my family - mom, dad, brother and extended family.”
Perez, now 51, says he still keeps in touch with Soto through Facebook.
Perez works in the Los Angeles Fire Department’s hazardous materials unit in San Pedro and has been with the department nearly 24 years.
He and his wife, Tamara (“Tami”), have been married for 26 years, and Perez vividly remembers how she upheld the “in sickness and in health” promise of her wedding vows, staying at his bedside nearly all of the 45 days he was hospitalized. He also was bolstered by their children, 25-year-old Sarah, who is pursuing a career in nursing, and 21-year-old Matthew, who is preparing to take the entrance exam for the fire department.
“What sustained me through it all was having an incredible support system both at home and with the fire department – and the desire to get my life back,” Perez said. “I feel incredibly fortunate and blessed.”
He and his surfboard have even returned to the waves, logging visits to Orange County beaches three or four times a week.
We asked Perez to look back and time of his diagnosis and ask himself, what do you know now that you wish you’d known then? What wisdom, soothing words or practical tips would you give your newly diagnosed self?
1. Document the information you're about to receive about all phases of treatment, medications, appointments, etc. Having someone with you to help absorb everything that's happening and make sense of it all proved to be extremely important. It was nice to be able have a well-organized file on hand when it came to recalling pertinent information when it was needed.
2. Think about trying to make time for some kind an exercise routine for yourself, as well as eating well. I figured the necessary treatment and rehabilitation necessary to survive was going to be one of the toughest challenges both physically, as well as mentally. I figured the better shape I was in going in to the process, the easier it would to endure it, and recover from it.
3. Limit the amount of research you do. It's nice to be informed about what the future will bring, but you get to the point where it can easily become overwhelming. Try to find peace in the fact that your fate is good hands. Choosing City of Hope as a treatment facility made it a lot easier.
4. Get back to your normal routine as much as possible, as soon as possible. Family has always been a big part of my life, as well as my job with the Los Angeles Fire Department and the fact that I am an avid surfer. It took about a year to find a donor so that I could move on to the transplant part of my treatment. Being with family, going to work and back into the water took my mind off of things - made the whole experience easier to manage.
5. Make plans for the future. Nothing like good, old-fashioned positive thinking to get you going in the right direction. As I prepared for transplant, I remember thinking there was little value in thinking my life was over. City of Hope gave me every reason to believe that was not the case, and they were right.