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Long to Live chapter
I'm new to this forum. Here is one of the stories included in my book-in-progress, Long to Live: Cancer Survivors Who Beat the Odds. It includes stories of survivors from around the nation who overcame a terminal cancer diagnosis. I'd love to hear feedback about my writing, as well as the overall concept of the book.
“Screw it. I’m going to have fun for a year and half and then they can bury me.”
That’s almost what I said when I was diagnosed with Stage IV colon cancer. If it hadn’t been for my wife Cassandra, there wouldn’t have been a decision to make. I would have gone out with a bang and wouldn’t have done chemo. But we were trying to have kids, and it was a new marriage.
My life had been a dream. Maybe that’s why I didn’t get married until I was 40. I used to be fearless. I rode a motorcycle, flew planes and scuba dived. I thought, “I had a good life, so I’m ready to die.” But then I realized, “I have this wonderful woman now. You never know; I could duplicate the first half of my life with the second half.”
I was playing drums in my band the night before Valentines Day 2004, when I felt this cramp that did not go away. I stayed awake all night. I finally had Cassandra take me to the emergency room first thing in the morning. They did an ultrasound and told me I had spots covering the entire liver. A needle biopsy confirmed it was colon cancer that had spread to the lymph nodes and liver.
We didn’t know about stages of cancer. We thought, “This is going to be ugly for the next couple of years and then we can move on.” Then we really got hit. The next week, Cassandra, my sister and I went to my doctor’s office and found out it was one of the worst kind of cancers, and we were at the last stage of it.
“You’re not a candidate for surgery and I wouldn’t advise chemo,” he told us. “I would probably just enjoy my life. You have about 18 months to live. The chemo would probably only prolong your life a couple of months. But the pain you’d get from it would decrease the quality of your life so much; there would be no sense in doing it.”
We just started bawling. It was bad enough that just a week before, we heard I had cancer; but then we got the news that it was terminal. We sat on the couch and cried for days. I called work immediately and told them I needed some time to figure this out. They told me to take as much time as I needed. My wife did the same.
We just couldn’t imagine how this could happen to two people who were pretty nice. We thought, “Why us?” That’s when I stopped believing in God and said, “This just isn’t right. I didn’t deserve this.”
I had no hope that I would make it past 18 months. I went to five oncologists in three different cities who told me the same thing: I was going to die. At that point, I decided to do some research because I didn’t know anything about cancer. I found a surgeon at Sloan -Kettering Cancer Center in New York City who was one of the leading experts on colon cancer that spread to the liver.
I faxed him 17 pages of medical records and asked if he’d take me as a patient. His office told me, “You have an appointment next Monday at 4 p.m. Be there.” That was the beginning.
He told me, “We’re not going to kid you; you’re in bad shape. But we have a lot of experience with patients like you and we think there is something we can do.” They didn’t shut the door like everyone else did. They gave me a little grain of hope. I had doctors who trusted me.
So every month, we would fly up to New York to get scans and chemo. In three years, I received a total of 57 chemo treatments and five surgeries. Because I was young and strong, I was on very high-dose chemo. They gave me twice the amount they gave other people.
There were several things that got me through the rounds of chemo. People told me I could heal myself and to try the alternative methods first. I said, “There’s no way I’m going to do that. I’m going to let the doctors do it. But I’ll try to supplement the medical treatments with other things.” It made me feel like I was covering all the bases. I figured, if you’re going to beat the unbeatable, you better pull every arrow out of the bucket. And I did.
I had healing touch weekly and talked to a shrink every two weeks. One of the best things I ever did was going to the Wellness Community’s support group. My wife went to the group for caregivers. We met so many people there. You can talk to friends or relatives all you want, but you aren’t in the same orbit. You need to talk with others who are going through it. I learned very early on not to try to tackle this by myself. There’s strength in numbers.
I saw there were other people who went through this, and there is something you can learn from each one of them. There was a nun in her late 60s in my group who received 18 heavy chemo treatments. She was talking about it like she was taking candy. She was so tough and somehow was thriving. There was another guy who was on a similar chemo regimen as mine who played racquetball the day he came home from chemo. He was 10 years older than me. I listened to how they accomplished this and said, “That’s what I need to do.”
Cassandra was 34 at the time I was diagnosed. She was very young to get this diagnosis. She was a model then, doing commercials and advertisements around town. Cassandra was like I was; she was a real tough cookie and didn’t talk with or need help from anyone. To someone like that, cancer is a death sentence. But she realized, with our situation, she needed all the help she could get.
By going to support groups, she saw extraordinary things other spouses were experiencing. This helped her to get into that reaching-out mode. It was very helpful to her and our relationship.
I was lucky to have several great people in my life. My mother backed out. She stuck her head in the sand and decided the situation didn’t exist. But my sister was a jewel; an unbelievable help. She took two weeks off of work and came here immediately. She went back and forth from Virginia Beach for doctor appointments, chemo sessions and for all the surgeries.
Also, I had two good friends: Rich, my tennis partner and Jeff, who played music with me in a band. They were both really integral to my success. When I “had no gasoline in the tank,” Richwould make me play tennis with him because he knew it’s what I needed to get through my next round of chemo. He’d send me emails, saying “I can’t play tennis without you. You’re my partner. If you don’t play, I don’t play.” He did this week after week for two years.
Jeff sat with me during my chemo sessions. It was unbelievable; a guy my age and married would come over and baby-sit me during my chemo rounds!
I was in sheer depression for over a year after I was done with treatments. I kept saying, “Now what?” You spend so many years just hanging on, then all of sudden, they tell you you’re disease-free. And you’re supposed to go, “Oh yay!”
Cancer has definitely taken a toll on my life, but it has given me a lot too. I’m a recovering drug addict. I did a lot of coke as a kid, and stopped 21 years ago. I prayed for years to get back in touch with myself emotionally because I was a cold fish kind of guy. For years when you are using, you kind of go on automatic pilot and cut off your emotions. So when you stop using drugs and alcohol, you’re left with an empty house.
I feel things really deeply now, good or bad. I like that. I want to feel. Little did I know that it would take cancer to get back my emotions.
I’m mending my relationship with God. I absolutely believe there is a Higher Power, but I have trouble with the Christianity version of it. I read spiritual books, but now I’m uncomfortable with the church setting. I keep trying to get back into going to church.
Cassandra and I have our struggles, but we’re doing much better with our communication, thanks to some counseling. Our love couldn’t be any deeper. It’s a lot better relationship today than it was before the cancer. We’ve seen the edge of the abyss, so there’s not much now that can really makes us think, “This life sucks.” We know what sucks, and that was cancer.
Another thing that has changed in our relationship is that both of us understand we need to make a difference in the world. We understand now material things aren’t what we need in life. Connections to other people, empathy and helping others … that’s what’s important.
I give back now by volunteering at the Wellness Community, working at the front desk and helping with fundraising. I was national sales manager at a meat company. I didn’t fit in my career; I loved the money, but it wasn’t for me. Right now I’m struggling with what I want to do. I’m on disability and looking for a job. I’m trying to enjoy every day, have fun and not plan too far in the future. And I certainly don’t worry about it.
Cassandra was in retail. Now she has a job at a community college helping poor, young people get into school and make it in the world, just as she did herself. She was the first person in her family to go to college. She has that story to tell.
My advice to people who are going through a similar diagnosis is to never let a doctor take your hope away. I think about when I was diagnosed with cancer, someone was smart enough to send me Lance Armstrong’s book. That’s all I needed to give me hope.
I have been cancer-free for three years and I’m having the chance to make my second half of my life even better than the first. I have good friends, a wonderful marriage and the opportunity to give hope to others. I’m a lucky, lucky guy.
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