I accepted my New Normal about 5 years after surgery for Stage III rectal cancer that required a permanent colostomy. I was 35 years old had two young sons and a beautiful, supportive wife. It was at that point that I bounced from bitter to better. It wasn’t any big lightning bolt event. I just missed doing the fun and active things I had enjoyed before the cancer.
I took up surfing with my sons and began charging forward like there was no tomorrow, because I had learned that there may not be. As on survivor put it so well on the Ostomy Support Group discussion board recently:
“I realized today that I have finally stopped viewing my life as a waiting room for death. I trust my body not to betray me again. If it does, I feel strong enough physically and mentally to cope if I am blessed again with more time.”
Five years earlier when I was only 30, I crossed another important emotional barrier. While still in the hospital a few days after surgery that removed a grapefruit sized tumor, my rectum and the lower third of my colon, I decided to vault from victim to victor. My motivation was the love of my wife, our boys and our family and friends. They just would not give up on me. They were so sure I would survive, that I just could not disappoint them. So I decided that I would take charge of my battle to beat cancer. I became general of the army that would defeat this disease and beat the odds to survive…only 30% chance of living past 2 years.
From my journal:
“I have fully accepted the fact that I have cancer and that getting cured will be painful and troublesome, and that my life may be changed after it is all over. I can even accept the colostomy because it is my best chance for long term survival. My wife, Trish has been so supportive. She said the colostomy is better than the alternative, BEING DEAD! About having to “poop in a bag.” Trish’s sister, Peggy said, “We love you for who you are, not how you go to the bathroom.”
At around 10 years cancer free, I began to feel the urge to give back to the community I had reluctantly joined. It seemed right to share my experience of surviving cancer and living well as an ostomate with other newly diagnosed survivors and ostomates. I felt good when others felt better about their journeys. Maybe just a little easier to make a tough treatment choice that would include an ostomy, or less frightening when they woke up after surgery to find a rosebud sprouting from their abdomen. Just a bit more hopeful, knowing that if I survived, so could they, no matter the odds. On a small scale, one to one, I was making a difference and answering that nagging question in the back of my mind, WHY ME LORD?
At about 20 years cancer free, I began getting radical about the lack of public awareness and resistance to talk publically about colon cancer and ostomies. Keeping quiet and sitting on our bowel problems was only allowing the disease to progress and reduce our quality of life. Since Komen runs and Avon 3 day walks, everyone was talking openly about women’s breast health, getting annual mammograms and as a result, breast cancer death rates fell like rocks. Why was it still taboo to talk about poo?
So I volunteered to dress up as polypman at the American Cancer Society’s Relays for Life, did public service announcements to promote March as national colon cancer awareness month, staffed the colon cancer awareness tables at health fairs and conferences. I pressed friends, family, coworkers and strangers on the street to get their colon screenings. Don’t be stupid like I was, and sit on symptoms which can give the cancer a chance to grow and spread.
It was at one of these conferences, the UOAA national conference in Reno, just last year where I met Rolf Benirske of Great Comebacks. I had watched Rolf kick field goals for the San Diego Chargers in the 80’s and had heard about his great comeback from Inflammatory Bowel Disease, and earn his position back with the team and even to be chosen to go to the Pro Bowl. But I didn’t know until last summer that Rolf was also an ostomate with a cause. The cause of increasing public awareness of bowel disease, and improving the quality of life for ostomates through the sharing of other survivors stories and celebration of their great comebacks.u to talk about poo? So I volunteered to dress up as polypman at the American Cancer Society’s Relays for Life, did public service announcements to promote March as national colon cancer awareness month, staffed the colon cancer awareness tables at health fairs and conferences.
Now I am an Ostomate with a Cause, too!
But, am I the same after cancer? I think NOT! How am I different, let me count the ways:
1. I don’t sweat the small stuff anymore
2. I DO stop to smell the roses
3. I live each day to the fullest and get the most joy from everyday
4. I don’t mind getting pooh on me
5. I don’t care what others think of me, how I look, if I smell or if I make strange noises