USA TODAY’s Nashville music critic on fighting colon cancer and learning he has a genetic disorder called Lynch syndrome.
5:25PM EST November 4. 2012 – When USA TODAY’s Nashville music critic Brian Mansfield was diagnosed with colon cancer at age 48, he figured that a lifetime of Southern-fried foods, extra-large sodas and stress eating on deadline had brought it on. Turned out he had a genetic syndrome that gave him an 80% chance of developing colon cancer. He chronicles his life with the disease — and with only a small part of his colon.
Luckily, the sedation hadn’t quite worn off when the gastroenterologist told my wife that the colonoscopy had revealed a 5-centimeter tumor eating into my colon wall. I absorbed the blow, internalizing it without fully reacting to it.
Before I had completely gathered my senses, I already had started taking the next necessary steps: getting a CT scan to see if the cancer had spread, meeting with a surgeon, calling family and friends, including a colleague who’d had a persistent cough at the same time I had the digestive problems that finally sent me to a doctor. We had joked that she probably had lung cancer and I had stomach cancer. Off by a couple organs.
“Did you have cancer?” I asked. ” ‘Cause I do!” She didn’t think that was nearly as funny as I did.
Who should we contact?
Nancy and I drew up a list of people to call before taking the news to Facebook and Twitter. Eventually, I cut it off at People Who’ll Get Really Ticked If They Hear From Somebody Else. Breaking the news to our four kids wasn’t as easy.
The oldest, Nick, 20, was away for the weekend; we waited until he got back to tell him. Zach, our 18-year-old, had just taken anatomy and knew the questions to ask. Yes, there’d been polyps. Yes, there’d been something else, too.
“Is it bone cancer?” asked 8-year-old Annalise. Don’t know where that came from, but no. “Oh, thank goodness.”
The 10-year-old, Gracelyn, had a more practical line of questioning. “Will it affect my trip to New York?” And that’s when the tears came.
That vacation, the one she’d been planning since she was 4, got to me. I could get my head around surgery and treatment: I get cut, I get chemo, my hair falls out, I get better. Doesn’t sound like much fun, but it’s a plan.
I could handle having cancer. But I couldn’t handle breaking a 6-year-old promise to a 10-year-old girl.
This probably sounds horrific, but the reporter in me got a little excited about the cancer. It was the best story I’d get to tell all year. I had six weeks until surgery, so I cleaned up my diet and started walking. A month later, I had dropped 10 pounds and was in better shape than I had been in years. I was in the honeymoon phase.
But cancer is sneaky and lies in wait for you.
My surgeon wanted to test me for a genetic disorder called Lynch syndrome, which increases the likelihood of developing cancer before age 50 more than a hundredfold. My family didn’t meet the diagnostic criteria — which include having successive generations and a first-degree relative with a Lynch-associated cancer like colon, stomach, uterine or ovarian — so my doctor wasn’t seriously expecting a positive result.
But that’s what I got.
The honeymoon ended quickly. That good story I’d been looking forward to telling suddenly became a multi-generational epic. The hysterectomy my grandmother got in her 50s and never talked about looked like a pre-emptive strike. My 74-year-old father, who’d never had a colonoscopy, quickly scheduled one, as did my younger sister.
And my kids? Each of them has a 50/50 chance of inheriting my mutation, a defect in the genes that correct errors in DNA replication. It’s like having a broken copier that nobody’s watching, endlessly churning out flawed copies. Stack those copies high enough, they turn into a tumor.
I had never heard of Lynch, even though it’s nearly as common as hereditary breast and ovarian cancer syndrome. According to the Centers for Disease Control and Prevention, 800,000 people in the USA may have one of the mutations, with as many as 98% of them undiagnosed.
The Sunday before my surgery, I gave my preacher a USB drive filled with songs I wanted played at my funeral. Just in case. “I’ll need this back the next time you see me,” I told him. “One way or the other.”
Coming out of sedation, I dreamed I was curled up in the far corner of a dark room, grimacing and clenching every muscle as tightly as possible, trying unsuccessfully to force the pain from my body.
My surgeon felt confident he’d gotten all the cancer by laparoscopically removing four feet of colon. The post-surgery pathology report read like the next best thing to happily ever after. The tumor didn’t get into any of the 36 lymph nodes removed and tested. It didn’t get into the blood vessels. It was just a big ol’ tumor that hadn’t gone anywhere. No wonder my friends told me the surgeon came into the waiting room practically skipping.
‘What can I bring?’
What’s the very best thing you can say to someone with cancer?
I’m coming over. What can I bring?
One friend called every week and asked that. If he thought I hadn’t asked for enough, he came up with his own ideas, from homemade spaghetti sauce to Bruce Springsteen bootlegs.
A fellow journalist asked my favorite question upon hearing about my diagnosis: When does the hard part come for you?
It pushed my story ahead, bypassing small talk to giving me the opportunity to express what concerned me most about my illness. It’s the question I’ll remember to ask others.
Another pal was one of the first people to visit me in the hospital and to bring food to my family when I got home. When I got it into my head that I would run a 5K benefiting the Colon Cancer Alliance, she agreed to pace me.
I used to think I had a hard time making friends. Now I realize I just had a hard time recognizing them.
It’s up to you, New York
Gracelyn got her trip to New York during fall break, after I found out I wouldn’t need chemotherapy.
We promptly set off for Coney Island, where Gracelyn wanted to eat a Nathan’s hot dog. She waded in the chilly October surf and screamed her way through the drops and the curves of The Cyclone.
In our five days there, Gracelyn marveled at the dinosaurs at the American Museum of Natural History and picked out skyscrapers from the observation decks of the Empire State Building. She listened to the wait staff sing at Ellen’s Stardust Diner and ordered lamb and noodle soup at Chinatown’s Xi’an Famous Foods. She shopped at Macy’s, posed for photos between the lions at the public library and hailed a cab near Herald Square.
Our tween caromed between childhood glee and almost-teenage cool, never more so than the day she lunched at the American Girl doll store, then went to a tattoo studio in Chelsea to get her ears pierced.
I don’t know that the trip felt sweeter for coming after this round of cancer, but it did feel like the last piece of unfinished business.
A new notion of ‘fair’
A college job at McDonald’s taught me an important lesson about fairness. Two guys came in, each wanting large fries. I filled the first box perfectly but accidentally overstuffed the second. Not wanting them to see me dump fries back into the bin, I decided to give the second guy more than he’d actually ordered.
The first guy was furious, believing I’d shortchanged him. Even though I hadn’t, I wound up giving him more fries, too, just to keep the peace.
That’s when I learned: It’s not that we want life to be fair, we just don’t want to have less than the next guy.
I prefer a baseline approach to fairness: Fair is dead. That’s the one thing we all wind up with. Anything that keeps me on this side of the dirt, I count that in the plus column.
I’m not going to beat cancer. We’re not in a competition. I understand why people feel they must take a war-like approach to the disease. But I don’t think of my long-term relationship with cancer as a battle. It’s more a workaround situation. Cancer will do what it’s going to do; I’ll do what I’m going to do.
For the moment, I don’t even have cancer. I have Lynch syndrome. Cancer is just a complication.
Granted, there’s that spot on my lung that’s going to need another look next month. My doctors and I will always need to keep vigilant watch to catch problems early. But even if I never receive another troubling test result, in my mind cancer will never be farther away than just around the corner. There’s always a better-than-average chance that it’ll be what eventually takes me out.
Cancer has given me unexpected gifts, too, and I hope I’m accepting them graciously. I’m leaner and healthier than I’ve been in years. I’ve learned how to appreciate a good day and not require anything more from it. The knowledge I’ve acquired about my inherited condition will equip my children to prevent cancer in their own lives. I might have even saved a life or two: My father had a large polyp removed during his colonoscopy that could have turned cancerous. I figure I bought him a few years.
When people ask how I’m doing now, I often reply, “Embarrassingly well.” I’ve enjoyed the attention, but the time has come to focus on the friends I’ve made who got their diagnoses around the same time I did and are now in chemotherapy, on those around me who have had much more trouble during these last four months — or who are about to.
As much as I love to tell my story, the real story isn’t about me. I’m happy just to have a part in it. Cancer or no, I’ve gotten far more than I deserve.
- My Semicolon Life: It’s not just your cancer by Brian Mansfield (familyhistorybowelcancer.wordpress.com)
- My Semicolon Life: Tracing my family’s cancer history – by Brian Mansfield (familyhistorybowelcancer.wordpress.com)
- My Semicolon Life: Welcome to the cancer club by Brian Mansfield (familyhistorybowelcancer.wordpress.com)
- Life-Saving DNA Test Overlooked in Rise of Colon Cancer: Bloomberg News (familyhistorybowelcancer.wordpress.com)
- My Semicolon Life: Crossing the finish line with cancer by Brian Mansfield (familyhistorybowelcancer.wordpress.com)
- My Semicolon Life: After cancer, New York beckons, by Brian Mansfield (familyhistorybowelcancer.wordpress.com)