When one of CrossFit’s giants, Jason Khalipa, announced last month that his daughter Ava had been diagnosed with Leukemia, the CrossFit Community responded with reassurance and support. But we were also at a loss. How can something so bad happen to a child and none of us are able to fix it?
I’ve been thinking about Ava. A lot. And the Khalipa family. It’s been nearly 28 years and I can still feel the utter helplessness surrounding my family the day I was diagnosed with cancer. We didn’t know what to expect in the coming months. We didn’t know if I would even live.
Like all of us, I want to help. I want to promise Ava will be okay and lift the oppressive worry and fatigue from her family. But I don’t know Jason and no one can promise Ava will be okay.
When I was diagnosed with Non-Hodgkin’s Lymphoma, the doctors told my parents that I had a 20% chance of living. And according to family legend, my father said, “No. My daughter has 100% chance of living.”
And, to me, that was that. I just had some hospital stays, chemo treatments and baldness to get through first.
So maybe I can’t help Jason and his family. But Ava is still on my mind…
When people find out that I am a childhood cancer survivor, they usually want to know how cancer changed my life. Cancer didn’t change my life. It was a part of my childhood. I’m sure it shaped who I was, and I’m certain that how we dealt with certain parts of it altered my path in life. But who is to know? I was 8 years old when I was diagnosed. To me, cancer became the new normal for awhile.
Maybe you know a cancer kid. Maybe I can help you help them by sharing some of my thoughts about what I experienced. About what I wish we would have known at the time.
You’re Still Beautiful
One of the worst things about being bald was that everyone thought I was a boy. I would make a little sign out of construction paper that read “I AM A GIRL” and tape it to my chest. One time I was wandering around a fabric store (I’ve always loved yarn and fabric), and I heard a lady ask her friend, What does the paper on his shirt say?
Before I started chemo, I had been a cute kid with long blond hair. The chemo took my hair and the assortment of other medications made me pale and swollen. I was the spitting image of Elmer Fudd. I did a great Elmer Fudd impression and would hold up a fake gun and say “Kill the wabbit.”
Yet sometimes I’d overhear the kids at school say things like, “She used to be so pretty,” or “I wonder what she looks like without her hat.” I felt very ugly and I was pretty sure everyone else thought I was ugly too. It seems silly to worry about that when your life is on the line, but I really missed feeling pretty.
So do a good deed and tell a cancer kid that she’s beautiful.
Not Everyone Has Someone
When I was first diagnosed, I was hospitalized for several weeks. The first week was especially brutal. Biopsies, spinal taps, bone marrow tests, splenectomy. More tests, more doctors. But through all the chaos, I knew that at least one of my parents would be there. Most of the time they were both there.
There were children on the hospital floor who had no one there.
One of the coolest things my parents did was rent videos and invite the other kids to come watch them with us. Dad came back from the video store one night with Biloxi Blues and the evening was cut short due to the PG-13 rating.
My parents were 28 years old when I was diagnosed with cancer. My brother was 3. We weren’t very well off before the cancer, but the cancer made us very poor.
The Ronald McDonald House was a godsend. When I was in the hospital, my parents and grandparents could stay at the Ronald McDonald House for a very low fee. It was clean, comfortable and it took away the worry of housing when I was hospitalized for long periods of time.
We also joined a cancer support group through the Ronald McDonald House. During the year I was on chemo, we hung out a lot with members of the support group. For me, it was great to be around other cancer kids. We could be bald and no one would stare. One of us would have a nose bleed and no one would freak out. We could play and roughhouse without someone worrying we’d damage each other. For a few hours a week, we’d be kind of normal kids.
Sometimes I wonder where my cancer friends ended up. (If you know a cancer kid from Topeka, KS in the late 80s, send them my way. Bill and Jesse Cox? Jennifer Luck?) To this day if I meet a childhood cancer survivor, there’s an instant understanding. An almost nostalgic feeling, and a comfort that there’s someone who knows the smell of hospital sheets, the friendships formed with nurses, and the odd taste of chemo in the back of your throat.
My parents read a lot of books about cancer. One told a story of a little boy who pictured Pac Man eating away at his cancer cells until they were gone. And he survived.
So I used to picture a unicorn stabbing my cancer cells with its horn under the cells exploded. I survived. (Hey, you never know.)
But we used visualization constantly. The first time I had a spinal tap (which is a very painful extraction of your spinal fluid that involves the largest needle you’ve ever seen inserted between discs of your spinal cord), I was so drugged up that I didn’t understand what was happening to me and the procedure was purely terrifying. After that my parents decided to use visualization instead of drugs.
My mother would describe a place – a field with butterflies – and I would add something – a unicorn or a Pegasus, and we would create stories so vivid that I could take myself out of the current situation. I did bone marrow tests and spinal taps without any drugs. I’ve always been proud of that.
I Didn’t Survive For a Reason
Not all of my friends lived.
I was lucky. Within a couple of months of starting treatment, I was in remission. I stayed in remission until I was finished with chemo and the cancer was gone. I have stayed in remission for over 26 years.
When I tell people I’m a childhood cancer survivor, sometimes I want to add, “But I don’t count. It was too easy. It wasn’t fair.” Of course, it wasn’t easy. It was a horrible thing that my family and I went through. I had a rare cancer for a kid and the doctors weren’t quite sure that I was going to make it.
Survivor’s Guilt can be an unfortunate side effect of surviving.
From the day my hair started growing back to well into adulthood, people would say, “God saved you for a reason.” It’s meant as a kindness, a simple way to explain why I survived when others didn’t.
But that simple statement is a burden. What could I possibly offer the world that is more important than Clifton Patty’s life? How does surviving cancer give me the credentials to save the world? It sounds dramatic and a bit self-pitying, but I went through much of my 20s wondering if I had earned my right to survive. Is this good enough? Does this pay my debt in full?
It was when I was unemployed, living temporarily in Michigan, and by chance had ended up volunteering for an adult cancer support group, that I was able to finally, truly, understand: I had not survived for a reason. But I did survive, and for the first time in my life, I could simply be thankful.
To the Khalipas: The chances of your ever reading this is slim, but I will just send my thoughts and hopes for your little girl out into the universe. Your CrossFit Community is here for you. We’ve got Ava on our minds.