I have this drive now that was missing years ago—to volunteer more, to participate in more cancer-related activities, to advance my career. I’m happy that I’ve integrated myself more and more into the cancer awareness community. I’ve got a pretty stable life, a good job, and I feel good. It’s a great feeling.
Light years from when I was first diagnosed at 17. During March of my junior year in high school, I noticed my lymph nodes swelling up, which I ignored at first. I figured it was an infection, but then it lingered. My mom saw it, we went to the hospital the next day, and the doctors determined pretty quickly that it was acute lymphosidic leukemia.
I was lucky they caught it early. They put me on a moderate eight-month treatment plan that allowed me some activity. But within two months, I went from 205 pounds to 135. I was bedridden. All the muscle in my legs atrophied, and I had to learn how to wa lk again. After being into exercise, fitness and lifting weights for years, I had this skin-and-bones look. It was a giant shock.
Those huge changes began my body image issues. It was really hard for me to handle looking so different, and I wanted to get back to what I had been. I started to binge and purge—an eating disorder and a vicious cycle.
Then toward the end of my senior year in high school I developed a terrible limp and found out I had vascular necrosis in my right hip. The ball joint in my hip had worn down to half of what it was. That was from the Prednisone I took during chemotherapy. Then just before college, my leg got broken when a car blew a red light and hit me riding my bike, so I had to postpone the hip surgery—and I started college in a weird wheelchair with a full cast on my right leg and a cast on my left arm.
I couldn’t play sports, and even after the wheel chair and the casts, I limped around everywhere. I lived at home; I didn’t want to live in a dorm. I was scared. I avoided classes where I had to do presentations or group work, and that prevented me from connecting to a lot of people my age.
At first, it was embarrassing to talk about my eating disorder even with my brother, who’s my best friend. It’s just something you don’t talk about as a young male adult. None of my friends talked about it, and I felt ashamed. I went inward and I didn’t know how to reach out for help.
But reading and some good friendships I managed to develop helped me see that my fears about looking different were ridiculous. Out of college, I got a job giving therapy to autistic children, and I had to have meetings with parents, my supervisor and other staff. With time and practice, I eventually worked through my fears. But if I’d asked for help, I could have done it in weeks rather than years.
I’d had an amazing support system in my family and friends, but I didn’t connect with other survivors or support groups. I thought, “I have a good family, I’ll keep a positive attitude, I’m going to be strong, and I’ll be proud of myself.” But inside I was feeling terrible.
I’d been married for six years and hadn’t even told my wife about the challenges I faced. I gave her a Reader’s Digest condensed version of everything because I didn’t feel it was going to be worth bringing up. I didn’t really open up about it until joining the UCLA Daltrey/Townshend Teen and Young Adult Cancer Advisory Board, participating in their various events, getting connected to Teen Cancer America and the OMG conference in 2014.
They had a seminar at OMG just for guys and there were about 60 or 70 sitting in a circle talking about their cancer experiences. But in all the sharing, nobody was bringing up any of the body image issues and the psychological stuff that can linger for years. The more people talked, the stronger I felt about sharing, and suddenly I was telling all these guys I didn’t know about the issues weighing me down more than anything else in my life. This from a person afraid to talk to his own brother.
I don’t know what compelled me to share, but it had a huge effect. I got a lot of positive feedback, and from that point onward, I’ve opened up about it with my wife. After all the years of hiding my fears, I can talk about them.
It was such a strange experience at OMG to meet thousands of strangers and have an immediate ice breaker—our cancer stories. Bouncing stories off one another makes you feel proud and happy. Connecting with other survivors is a great thing, and I wish I had done it right out of the gate.
Patrick is a 12-year survivor.