Because of the stigma involved, I’ve withheld personal information from most people. The other day, though, I researched how others handle my situation. I learned that others have attempted to erase the stigma by being more open and therefore becoming an advocate for better health care. I want to do the same.
Here’s what I’ve tried to hide: I am a colorectal cancer survivor. For years I refused to talk about my experience because it was personal and involved butts, poop, and toilets. I don’t want to be silent anymore, because being open about it might save someone else’s life.
My cancer is in remission, but surgery, chemotherapy, and radiation have forever changed my life and my body. I’m fortunate that I don’t have to wear an ostomy bag—my doctor was able to reattach my colon—but my bodily functions will never be the same. Because part of my colon and rectum were surgically removed, my bathroom urges have become unpredictable and often imperative. No longer can I count on taking care of my “morning constitutional” before leaving the house in the morning and then being fine for the remainder of the day.
Everything I’m experiencing could have been avoided if I’d gotten the first colonoscopy my doctor recommended decades ago, when I turned forty. Instead I refused to endure the procedure. Year after year I turned down my doctor’s advice to get a colonoscopy. Even when I developed symptoms, I convinced myself I just had hemorrhoids. By the time I acquiesced and underwent a colonoscopy, I had Stage Two colorectal cancer—a fist-size tumor, when most tumors are less than pinky-fingernail size, and it had invaded a bone and almost occluded my rectum. Excruciating pain had me taking opioids, despite the risk of addiction. Before the doctor could schedule surgery, I was rushed to the hospital with a hemorrhage that I was lucky to survive.
Recovery from extensive surgery took months, after which my oncologist insisted I undergo daily chemotherapy and radiation as preventive measures. First, though, I had to allow technicians to tattoo me where the radiation would focus. Blue spots were burned into my flesh on my spine and on both hips.
Day after day I had to drive to the hospital, undress, and lie face down on a table. Two technicians slid my naked body this way and that until their lights aligned with one tattoo after the other. I had to hold my breath while they left the room, the radiation too dangerous for them to be around. From behind a wall a technician delivered dangerous radiation deep into first one hip and then the other and then my spine. The doctor had said that radiation would kill any remaining cancer cells. He didn’t tell me about the damage the radiation would do to the healthy cells it burned through or that the damage would continue to get worse, even after the treatments ended.
I also had to swallow huge pills—oral chemotherapy—because that form was better for colorectal cancer than infused chemotherapy. Cognizant of swallowing pills that were poisoning my body, I developed an aversion to all pills. That repulsion means that to this day, every single time I have to take daily pills that regulate my blood pressure and thyroid, my trauma returns, my body reacts, and I have difficulty swallowing.
During the extended sessions of chemo and radiation, I lived with low-level nausea and almost uncontrollable diarrhea. Eight or ten times a day I had to desperately dart to a bathroom, no matter where I was.
For five years after my surgery I had countless doctor’s visits, innumerable painful blood draws, and multiple CAT scans. I’ve never calculated how much time I lost going to oncologists, radiologists, hospitals, and pharmacies or how many days I lost while recovering from operations, but I know I missed my high school reunion, had to put a hiatus on bowling with my team, and couldn’t go to my water aerobics classes for a long time either.
Only one year after completing my surgery, radiation, and chemotherapy, I felt like I’d aged ten years. Radiation damaged my body in ways I’ll never fully know, but the CAT scans revealed that my hips and spine visibly deteriorated. No longer can I walk or stand without pain in my hips and back. The circulation in my extremities has been compromised too, since the cancer surgery also removed many lymph nodes. My feet stay swollen and painful.
If I’d only had that first colonoscopy at age forty and had been monitored from then on, none of these things would have happened. At that first colonoscopy the doctor would have seen the polyp and clipped it. It never would have developed into cancer.
I hope everyone who reads this confession will take my advice and get screened for colon cancer early and often. Oh, how I wish I had.
What I can do now, though, is tell my story. I have stopped being silent. I need to be an advocate for cancer screening and prevent others from going through what I continue to endure.
Do you also have a story that can help others? I hope you write it.
