‘My cancer diagnosis: What I wish I’d known’ – Jeff Maurer
As a veteran Ventura County firefighter, Jeff Maurer was hardwired to respond to emergencies. So, in 1995, when his captain’s 6-year-old daughter was diagnosed with leukemia, he and his colleagues mobilized and took turns donating blood on her behalf to Children’s Hospital Los Angeles. The day Maurer donated, he went upstairs to visit the child’s family.
A nurse interrupted their reunion, escorting him to the hallway with disturbing news: A lab tech had found an abnormality in Maurer’s blood work.
He soon discovered that the disease threatening his friend’s child was rampaging in him, as well.
His platelet counts were dangerously low, and his blood contained “blast” cells, clusters of immature white cells that could crowd out his healthy cells — and kill him.
The improbable diagnosis of acute myelogenous leukemia hit him hard — particularly since he felt fine, was a runner and had not been experiencing symptoms.
“I started thinking of all the things that I would miss in life should I not be around,” recalled Maurer, who was only 35 when he was diagnosed. He thought first of his baby daughter, Rachael, then only 8 months old.
“The realization that I may not be there as a positive influence in her life and as her dad was devastating,” he said.
“I was focused on the fact that I would be missing her birthdays, teaching her to drive, being there when she had her first heartbreak, and watching her graduate from high school. That last one really affected me in a profound way. I wanted more than anything to see her experience that momentous occasion where many kids walk through that door into adulthood. I could see every detail, and had wondered if I would be there to really see it with my own eyes.”
He met with Stephen J. Forman, M.D., the Francis & Kathleen McNamara Distinguished Chair in Hematology and Hematopoietic Cell Transplantation, who had gone to medical school with Maurer’s father. “I quickly realized that Dr. Forman was not only an exceptional physician, but was kind, empathetic, brilliant and knew exactly what he was talking about. I had faith in this man, and felt certain that if any organization and physician could be my best chance, they were right in front of me.”
Maurer learned that unless he underwent a bone marrow transplant, his prognosis was bleak — six months to a year. As the search began for his donor, he began treatment at City of Hope.
The firefighter trained to save others now focused on saving himself. Others joined this fight of his life. He remembers the day a motor home pulled into the hospital parking lot filled with his firefighting comrades.
“I could see arms waving from the windows,” Maurer recalled. “I saw the cavalry coming to save me.”
For months, they came to the hospital to support him, donate blood and sign up on the bone marrow registry. “A few were close matches,” he said, “but in the end, it was my youngest brother, Greg, who was the best and almost perfect match. That gave me a whole new appreciation of the phrase ‘blood brothers,’” he added.
Maurer underwent chemotherapy and radiation to prepare for the transplant. He lost his hair, appetite and eventually 50 pounds, since “everything tasted like aluminum foil.” He remembers the kindness of the nurses, who kept encouraging him to eat. Finding out he liked root beer floats, one nurse improvised a concoction for him from the nurses’ pantry. “It was the very first thing that didn’t taste like I was licking the bumper of a school bus,” he recalled. The treat became a mainstay during treatment and he even enjoyed one the day he watched the bag of his brother’s lifesaving cells flow into his body.
In the early days of therapy, he tried visualization techniques, imagining the leukemia as a grotesque “menacing, lifesize amoeba with thousands of razor sharp brown teeth,” a “nefarious little creature” that was never quite out of mind even as Maurer sang his little girl to sleep.
After the bone marrow transplant from his brother in December 1995, the imagery transformed. “Tables had turned. In my mind I finally got a handle around ‘leukemia’ and mentally beat it into some sort of submission, into a size that I could grasp and squeeze into a small, cold steel box until I could figure out what to do with it and how to go forth with my life, while ending its ‘life.’”
In May 1996, only five months after the transplant, Maurer returned to work. In 2005, Maurer was diagnosed with colon cancer but was successfully treated at City of Hope.
Today, he remains in remission from both diseases and continues to enjoy good health and working as an engineer in the Ventura County Fire Department. In his spare time, he kayaks, creates metal artwork and is learning to play the guitar.
The little girl whom Maurer tried to save back in 1995 eventually underwent a successful bone marrow transplant, receiving cells from her little brother. Today, she is a healthy 21-year-old teacher in Washington, D.C.
As for his own child? “My daughter Rachael is now a beautiful 18-year-old woman,” Maurer said. During “one of the very best days of my life,” he saw her graduate from Westlake High School, and next fall will watch her embark on her sophomore year at California Lutheran University in Thousand Oaks, Calif, where she is majoring in broadcast journalism, and runs track for the team. She also just won the Miss Bel Air competition.
He also remains close to his family — particularly to brother Greg. “He always gets the best gifts for his birthdays, since he gave me so many more.”
We recently asked Maurer to reflect on his experience: Looking back at the time of your diagnosis, what do you know now that you wish you’d known then? Whether wisdom, soothing words or practical tips, what five pieces of advice would you give your newly diagnosed self?
Please be mindful that my treatment was 18 years ago, so treatment modalities have changed (and improved). New treatments have helped to ease patient discomfort from the "old days."
- You are not in this alone. Many have come before you, and have survived. Have faith in treatments and your caregivers. Remember that you are at City of Hope. They are the first string. You are now being treated by the very best that there are, anywhere.
- Attitude. In my case it was extremely beneficial, and I believe that it was instrumental in my outcome. I strongly encourage any patient to believe in the immense power that we all have in our minds. I believe that the mind works closely with your body to orchestrate cure. Your body will listen to what the mind has to say, but you must believe it with every breath, and live it. Set your mind on a course to "cure" and better health. I adopted a mindset that I was too stubborn to allow disease to "win." It got very personal. As I sat in my bed, or walked the halls, I.V. poles in tow, I would break apart that terrible word, "leukemia,” then reassemble it, so it worked for me instead of against me. Finally, I came up with the phrase; "Lucky me, eh?" That's my (new) version of the word ”leukemia.” I was "lucky" because I was living at a time in history when science could keep me alive. Yes, I'm still considering a tattoo of that phrase wrapped around a four leaf clover.
- Ask questions. The more information you have at your disposal, with more ease will you move forward.
- Immerse yourself in positive thoughts and attempt to find some piece of humor in daily situations (that may be negative) while being treated. Find some way to smile. After all, you're getting better, not getting worse, right? (See suggestion No. 2). On the day that I woke up with bits of my hair on the pillow, I took my I.V. poles on a little walk. I went straight to the nurse’s station, where I commandeered a nice pair of scissors. Upon returning to my palatial room, I bent my head over the sink, and gave myself a nice, tight hair cut then shaved my head. I only saw bits of hair on the pillow one morning, not many. I felt much better with my new look, and more importantly, put myself in control. Again, be stubborn, and find a way to change the situation so it benefits you. Take control where you see the opportunity. I "won" that day, and leukemia lost. It put a smile on my face just because that's not something I would have normally ever considered. Win in small ways over and over again. It helps.
- Have patience. As much as you want to be cured this very minute, it’s going to take a little time. This is a time where it will be helpful to just accept that some days will be easier than others, and things may move more (or less) rapidly than you would expect, or want them to. Be flexible with your thoughts about when accomplishments and progress will happen, while knowing that in the end, you will be cured and healthy once again. I always thought of this healing process as a “speed bump” in my life. You must slow down a bit to get over or through it, but you will get there.