Jay Steiner: Forty-Year Childhood Cancer Survivor and Past Caregiver for His Soul Mate
I am a long-term survivor of childhood acute lymphoblastic leukemia (ALL). I like to think there was no turning back when I was declared cancer-free at age 11, but that’s not really true – my experience made me the person that I am today. I learned not to sweat the small stuff, and striking a balance in life is really important to me. My number-one priority is to be a good father for my children, but I’m also very driven professionally and I love to play, travel, and go on adventures.
I was five years old, living a normal childhood, having lots of fun, when I was diagnosed with ALL. I don’t remember much about my diagnosis because I was so young, but I do recall my parents taking me to the doctor after I had an accident, just your typical childhood fall in which I hurt my leg, and my parents telling the doctor I also didn’t seem to possess the same amount of energy that I had had in the past. They ran some tests and ultimately I was diagnosed with ALL.
I really didn’t understand what was happening to me, but I did know that it was a serious situation because of the ways my parents were reacting. It was doom and gloom – at that time, in the mid-1970s, survival rates for childhood ALL were much lower than they are today. I also remember my parents telling me that if they could trade places with me they would, in a heartbeat. I never doubted that commitment. So, even though my cancer diagnosis was an unfortunate thing, it made our already close family even closer.
At the time, we lived in Wichita, Kansas, but I was referred to The University of Texas MD Anderson Cancer Center in Houston, and so my parents decided to relocate the family to Houston on a permanent basis. From the ages of 5 to 8, I had lots of chemotherapy and radiation treatments. Initially I was treated in the hospital. Then, after about a month, I was treated as an outpatient. At first I was going in a couple times a week, and then it became once a week, and then there was more and more time in between sessions. I remember dreading the appointments, but we would celebrate afterward.
After my treatment ended, at age 8, a bone marrow biopsy showed no cancer, but it wasn’t until I was 11 that I was officially declared cancer free. At that point, I made up for time I’d lost to my treatments. I recall playing tag, baseball or basketball outside with my friends until it was too dark to see, and even to this day, I feel that I’m a big kid who loves to play as an adult.
I’ve had no long-term health consequences as a result of my journey with cancer, but my experience really made me appreciate life. It’s so easy to get caught up with life’s frustrations and daily responsibilities, but I try to take the time to stop and smell the roses. My experience also made me want to give back, and I feel an important responsibility as a survivor is being there for others facing their own battle.
It is so challenging to watch someone you love go through a journey with cancer. Sometimes you don’t feel there is anything you can do to make a difference, but there always is. Sometimes it’s as simple as holding their hand as you sit in silence, just being there for them. But as a caregiver, it’s important to take care of yourself. It might sound selfish, but taking care of yourself will enable you to be a better person and, in turn, be there for your loved one.
I say this not as a cancer survivor, but as a husband of a wife diagnosed with breast cancer at age 37. My wife Monica’s journey was a difficult one for our whole family; our kids were just 3 and 5 when she was diagnosed. I was proud to be right there at her side throughout her journey. We never gave up hope, but as her time was approaching, it was very difficult. I had to tell our kids that today was the day they were going to lose their mom. It had a huge impact on my life, but I’m thankful for everything, for every moment, that we had.
I am also extremely thankful for all the clinical trials that were available to Monica during her journey; without them I feel cancer would have taken her much sooner. That’s why funding cancer research and clinical trials is so important. I don’t want anyone else’s children to have to grow up without a mom or a dad and other adults to have to face the rest of their life without their soul mate at their side.