Larry Ali: Rhabdomyosarcoma

DSCN0220I was twenty-three, and what started out as a hernia turned out to be muscle cancer. When I got the news, I went to my car and broke down. I just unraveled. At that moment, I didn’t know who I was, where I was, where I was going or if I’d be there. That was the hardest thing I’ve ever had to deal with, my worst nightmare come true. And I’m a pretty tough character to break because I’ve always been so positive.

Rhabdomyosarcoma is a rare childhood cancer, and my treatment didn’t start out well. The first hospital I went to had never faced this kind of cancer, and my oncologist had never treated anyone with it. That left me feeling uncertain because no one really knew what was going on, but she persuaded me to undertake treatment.

I ended up doing only one treatment, which was horrible and took me about three weeks to get over. I also didn’t have the kind of support system I was promised. When I told my oncologist I was stopping treatment, confident in my personal faith, she criticized my beliefs. That turned me against her, and I stopped going to treatment. And I got better.

The cancer came back in eight months. My right leg started swelling up and I got sharp pains in my stomach. The nightmare was back. I went to a different hospital that turned out to be a perfect fit. They got me to do what I needed to do.

Smoking JacketIt was an aggressive treatment—every three weeks I had to come in to the hospital overnight. I did that for 36 weeks, then radiation for six months. I got three drugs— Vincristine, Actinomycin-D, and Cyclophosphamide—VAC. I called them a vacuum because that’s how I felt after a treatment. They vacuumed the life out of me, leaving me feeling like a zombie.

During treatment, my girlfriend was the only person who didn’t abandon me, and I respect her to this day. My friends didn’t want to be bothered. Their response was, “I don’t like to see you like this,” but they never checked on me. They never called to say, “Hey, can I get you anything?” or “Do you want to hang out before you go back in treatment?” Nothing.

My mom looked at me as if I were already gone. I probably could hold my breath for as long as she spent with me during my treatment.

I’ve always been an optimistic person. I’m also a jokester, so I’ll giggle and joke to keep spirits up. I try to focus on the positive and maintain a positive energy and I find that fewer bad things come my way. And if one does, I can find the positive in it.

But in treatment, I let everything go and I turned my emotional switch off. I didn’t have another fighting bone in my body, another day of strength. I thought I was going to die. I didn’t know how I was going to make it through all of those treatments—all of the pain and sickness. I was not the most spiritual person before cancer, but during this treatment, I came to believe in a higher power.

That’s the only way I can explain how I found the energy to make it. It was as if I shut my eyes, and when I woke up it was over. I can’t put my finger on exactly what day or time it was, but I actually felt that.

SNV32742I focused on my recovery and stopped reaching out to everyone. It was a little dark, but I found a kind of peace because I’d rather be alone in the space where I’m taking care of myself than have people with me who don’t want to be there. I’ve spoken with the friends who abandoned me, but I wouldn’t call it a reconnect. I don’t have any hard feelings, but we won’t be as cool as we were before.  And my girlfriend and I aren’t together anymore, but we’ll be best friends forever.

I make new friends all the time now, and I feel these relationships are more genuine than my old ones. I let more people in. The space where I’m making new friends has more of a mutual atmosphere where we have a common thread—like the people I met at the AYA support group, the Boys and Girls club, or the community center where I help underprivileged kids.

I’m a lot less emotionally attached today. I’m still positive and optimistic, but I have a narrower focus. I shut out a lot of unimportant things I used to care about.

A lot of peoples’ problems are really, really simple.  They haven’t taken the time to really slow everything down and just appreciate everything for what it’s worth. Since I started living my life like that, it’s been a lot more stress- and problem-free.

Larry is a three-year survivor.

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