Craig Stein: Colon Cancer

Craig Stein 2The best analogy I can find is a racehorse . . . that never raced. That is my life. A gifted athlete, who for various reasons never turned pro. The energy is still there, the mindset, the desire, the competitive spirit, but the opportunity has been lost.

The opposite of racing is pasturing. I don’t exactly see my life as out to pasture, not in the least. But it certainly lacks some flow, the flow of an athlete or a racehorse in motion.

When I was 19 I developed ulcerative colitis. That means my guts exploded. I saw images of my gut on screen, and it was like someone took a machete to it. Very nasty. Extremely painful.

Like sports, music has always played a significant role in my life. In 2002, I auditioned for the Blue Man Group. They auditioned 1500 people across America and asked eight to go to New York to be potential “blue people.” I was one of them.  They sent home one person every two days to cut it down to three final selections and I was fourth on their list.  Of course I was bummed out at the time. But if I’d made it, I’d have gone to Vegas, been distracted, and probably wouldn’t have gotten the annual colonoscopy that was part of my life with colitis.

A few days after getting it that year, a nurse called asking me to come in and speak to the doctor. I knew immediately it was not good news, and I had her tell me on the phone what was up. She said: “adeno carcinoma,” a cancerous polyp. At the time I had no idea what any of that meant, although I knew “carcinoma” was noooooooooot a good thing! I guess I have the Blue Man Group to thank for what ended up being a relatively early diagnosis of stage 1 colo-rectal cancer. If it hadn’t been caught that early, maybe I’d be dead now.

That was the beginning of a crazy cancer carnival. The doctor gave me two options, both of which would remove my colon. Option 1: a colostomy, which would give me a bag connected to my small intestine and hanging off the side of my stomach, collecting shit all day.  Option 2: a J-pouch operation: the small intestine would be pulled down and connected to my anus. I gather the shape of the small intestine is a J. Option 2 keeps your ‘plumbing internal’ so to speak.

The doctor gave me all of 24 hours to decide which life-altering option to choose.  He wanted to know because one operation takes twelve hours and the other eight, and “they needed to schedule the operating room.” So what’s it gonna be?  It’s like I was going in for a haircut! Do you want a perm, should we give you a buzz cut, what do you want?

It didn’t help that I was totally alone through all this. I have a restraining order against my father.  I don’t talk to my brother. And I have limited communication with my sister. Eight months prior to my diagnosis, I watched my mother die of lung cancer. I knew exactly why I got cancer and where it came from—a horrible family environment causing years and years of relentless stress. But now it was just “what am I going to do with this thing?”

I spoke to a variety of people and ultimately chose the bag because it would ensure no future anal cancer. (There is a tiny chance that colorectal cancer survivors can develop it.)  But then I ran into this 5-star angel of a doctor who was lending a hand during one of my pre-op tests.  He took me into his office, locked the door, and said I was not allowed out unless I promised him I would choose the j-pouch, not the bag. He claimed I was way too young for a colostomy, and that there was no quality of life comparison between the bag and the pouch. There were possible future complications with a pouch, but it was worth the risk. That’s the first time a doctor took a genuine interest in my future well-being as a whole person. Subsequent to my operation I requested that he be my ongoing tending physician, and he agreed.

Craig Stein 1Just before I got the cancer diagnosis, I had decided to go to grad school. I was accepted into a great program and relocated to a new city 6 months after my operation. I wasn’t going to let the cancer thing change those plans if I could help it. Besides, it gave me a geographical—and psychological—fresh start.

After going through cancer, your world is completely topsy-turvy. It’s like an enormous wave has crashed into you and you’re being battered around under the ocean, not knowing which way is up. I had to figure out all of this craziness, how to live a ‘normal’ life again, since everything had become very un-normal.  It’s a radical shift in what you do and how you have to approach the world.

I’m a big proponent of ‘knowledge is power’ and in sharing experiences. After grad school I attended a young adult cancer retreat hosted by Planet Cancer. It was really important for me to  find and connect with other people close to my age who had gone through similar experiences. No one else “gets it”—you know—really gets it. While at Planet Cancer, I found out about First Descents. They offer week-long whitewater kayaking trips, rock climbing, and surf programs for young adult patients and survivors, ages 18-39.

Spending a week paddling through white water or surfing Californian waves sounded like my kind of therapy!  Of course there are opportunities to talk and reflect while at First Descents, but I liked their physical approach to wellness and healing. So far I have attended two week-long sessions with them. I’ve met some great people through being involved with these two young adult cancer support groups, and I cherish those friendships.

Through cancer, I realized how strong I was, and that I can call upon that deep strength when I need to.  Although during the worst part, I had to dig and re-dig and re-dig again to find it. There were a couple stretches when I didn’t know how to get up. I’ve been an athlete my whole life, and when I get knocked down I get up.  But I could not get my sorry ass out of the hospital. I think it was a combination of not having very much emotional support and being sicker than I could ever have imagined. I am normally 185, and I was all of 104 at one point. It’s not a situation I want to revisit.

Hockey, skiing, tennis, surfing, kayaking, running, biking, swimming—these are all part of my life at the moment. That’s how I like it. There are definitely daily issues—aches and pains and constant inconveniences—but it sure beats being in that crazy hospital environment. And what keeps a smile on my face? The thought of one day having a ranch and being able to rescue a few retired race horses.

Craig is a 10-year survivor.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.