When my daughter learned she would have to endure still more intensive chemotherapy for her leukemia, a tear welled up in her eye. She would now be homebound at least two more months, and attending high school for any of her senior year looked more remote than ever.
But she stopped herself, and her steely resolve returned. “If Ben can go through everything he’s had to deal with,” she said, “I can do this.” Amy has kept her commitment, with flying colors. Her parents could not be more proud. Ben’s parents undoubtedly feel the same way.
Ben is a cancer survivor nonpareil and author of Twice: How I Became a Cancer-Slaying Super Man Before I Turned 21. My daughter met Ben at the Children’s National Medical Center clinic, where they both go for treatment, and later read his book. An online blurb succinctly describes his ordeal and ultimate victory – and helps explain why the book had such a profound impact on her.
“At 16, when most high school juniors are worried about getting a driver’s license, getting a date, getting on the tennis team or getting into college – Ben Rubenstein got Cancer. But relying on the pop culture icon Superman, he took on harrowing surgeries, transplants, chemical therapies and inner struggles, to beat Cancer – twice. Like his offbeat and irreverent blog, ‘I've Still Got Both My Nuts: A True Cancer Blog,’ the compelling, behind-the-scenes story related in his book combines the author’s unique blend of humor, honesty and an indefatigable attitude that helped him become a two-time cancer survivor.”
Actually, the book’s title is a bit misleading. If Ben had waited just a little longer, he could have written Thrice – because he is now winning his third battle with a life-threatening disease.
Number One was bone cancer: Ewing’s sarcoma. The first tipoff was sharp pain, deep inside his hip, during a tennis match. The cancer eventually destroyed most of his left ilium, which was removed surgically, causing his femur to push up into scar tissue, instead of his hip socket, and leaving his left leg several inches shorter than his right. (A lift in his shoe compensates.) But numerous chemotherapy and radiation treatments eventually beat the cancer.
Number Two was myelodysplastic syndrome (MDS): a bone marrow genetic abnormality and cancer that impairs the number and quality of blood-forming cells. Left untreated, the disease can evolve into acute myelogenous leukemia (AML). Ben and his family opted for a bone marrow transplant that carried a 30% chance of living. Once again, his Super Man attitude helped get him through.
The transplant was preceded by still more chemo and radiation sessions, to annihilate his existing marrow, so that stem cells from a frozen umbilical cord could create entirely new marrow. The replacement marrow changed his blood type from A+ to O+ and generated completely new platelets and red and white blood cells. Because the cord was from a girl, his blood now has XX chromosomes, instead of XY – spawning endless sexuality and transgender jokes. The transplant restored his immune system, and Ben rarely gets sick any more.
Number Three is ferritin overload: excess iron in the body and vital organs, caused by the many blood transfusions he needed during his MDS treatments. The disease increases the risk of liver disease, heart failure, diabetes and other problems. Ben visits the clinic every few weeks for iron reduction therapy, in which blood is removed and replaced with saline. We got to know Ben during one of these sessions.
The illnesses, treatments and often nasty side effects forced him to suspend his college program for a time, but he graduated from the University of Virginia in 2007, with a degree in economics. Ben is now a program management consultant, writes for his http://www.CancerSlayerBlog.com/ weblog, gives motivational speeches, and recently climbed the grueling “snake path” to the top of Masada in Israel.
He just celebrated his eighth stem cell transplant anniversary and in September will toast his tenth anniversary of being free of bone cancer. His journey is a tale of grit and survival, recorded in diaries, and presented in colorful, honest, gifted prose – with humor and perceptive insights that will give hope and courage to patients and parents alike. (Some may be put off by his reflections on teenage fantasies about his always gorgeous nurses, or unvarnished discussions of treatment procedures and effects. But they are part of his brutally candid reflections on life with cancer and what it takes to win the battle.)
For sustained attitude, Superman was his role model. When it came to getting through the worst moments, to winning the next round, Rocky was his inspiration. The boxer helped him transform sadness into anger, and anger into energy. The Rocky poster in his dorm room proclaimed, “His whole life was a million-to-one shot.” The comic book character “liberated me from being a Sick Kid and exposed me as a Super Man,” he wrote. Rocky “inspired me to tell cancer to go to hell.”
Ben’s Code was simple. Survive. Think of cancer as normal, and just live your life. Never cry, complain, show pain or fear. Never question your superior ability to survive, or let cancer make you sad or jealous.
His code may not work for everyone. It certainly didn’t work all the time for Ben. But like our American Constitution, it was his ideal, his inspiration for what he wanted to be and how he wanted to live. It’s the basis for his advice to others battling life-threatening diseases. Choose whatever positive outlook, role model and unique survival strategy works for you. Find and use whatever people and life stories will get you through the toughest times.
Have faith in your doctors, your friends, your body. Believe and know your body will get its blood counts back up; you will handle the pain; you will bounce back; you will have a wonderful cancer-free life.
During treatment, don’t worry about eating exactly the right, most nutritious foods. Eat what you want, what makes you happy, what keeps your weight on. You can be more “perfect” later on.
Attack each setback. Never let setbacks drag you down. A few tears, and that’s it. If your cancer means you’re forced to spend time at home with your parents and siblings, hang out with friends whenever possible rather than going to school, or completely set your studies aside for awhile – so be it. Accept it. Get on with your life. And know there will be a better tomorrow.
Keep up as much of your past life and physical regimen as possible, during treatment and certainly afterward. Change what you must, but never look back, never stop moving forward.
Ben was once a very good tennis player. He can’t play anymore. So he uses a putting green, to perfect his short game. He lifts weights, goes “spinning” on his bike, punches an 80-pound bag, and eats fruits, vegetables, meats and fish, but no processed foods. He works hard on his career, sees his friends, and arrives for iron reduction therapy with smiles and hellos for everyone he sees at the clinic.
Most important, he says, “my personality has held steady; I'm still patient, quiet, shy, generally happy and easily humored. I'm still me.”
And Amy? She just entered her final phase of brutal, intensive chemo – following Ben’s Code and inspiration to tackle each obstacle and setback. She’s studying at home, seeing friends at every opportunity, otherwise keeping up via cell phone and Facebook, and getting ready to graduate from high school. Following a richly deserved vacation trip, she will become a redshirted freshman: arriving on campus on the one-year anniversary of her leukemia diagnosis! She’ll spend a year working with trainers and coaches to get her strength, speed and foot skills back – and begin playing college soccer in 2012. She’s still Amy: mostly happy and upbeat, always tough and looking forward to college and life.
We all hope every family and child forced to confront cancer can learn from these experiences … have faith in God, one another and their medical professionals … and live long, cancer-free lives.