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23andme: Genetic Testing Saviour or Scam?


By Anthony Zurcher Editor, Echo Chambers

It seems like a life-changing innovation. Mail a swab with a bit of saliva off to a lab, and find out if you’re at risk for cancer, or Alzheimer’s, or some other genetically linked disease. What would you do with that information? Wouldn’t you want to know?

According to the Food and Drug Administration, however, it’s an idea that’s too good to be true.

The FDA came down hard on the company 23andme, which had offered just such a mail-order testing service. The company couldn’t ensure the reliability of its testing, the government contended. And without reliable test results, patients could seek unnecessary, possibly harmful treatments for non-existent conditions.

Two former Republican administration lawyers, David Rivkin and Andrew Grossman, don’t see it that way, however. For them, it’s about freedom of information: the government is trying to prevent patients from “knowing about their own health”.

Yes, they write in Tuesday’s USA Today, the field of genetic research is still developing, and the tests aren’t 100% reliable. “But that fact does not mean these services aren’t useful to consumers, particularly when combined with traditional diagnostics.”

“Rather than regulate by assuming that consumers are incapable of understanding their personal genetics,” they conclude, “the FDA should be thinking about the enormous opportunities to improve health offered by widespread, affordable genetic testing.”

“We need something like 23andme to help develop systems for letting people know how to deal with this genetic information, and for creating a world where people can actually start to deal with lots of health data”

Matthew Herper Forbes

 

MSNBC‘s Eric Rosenbaum agrees. “Look, health is no laughing matter, and the FDA is right to have concerns — especially given the predatory history of the medical and drug industry,” he writes. “Yet there’s a fine line between a regulator’s looking out for your best interest and one being a little overly paternalistic, or just behind the times.”

Forbes’ Matthew Herper would like to criticise the FDA’s decision, too, but he can’t. 23andme brought this on itself, he writes, by ignoring the government for six months.

“Either 23andme is deliberately trying to force a battle with the FDA, which I think would potentially win points for the movement the company represents but kill the company itself, or it is simply guilty of the single dumbest regulatory strategy I have seen in 13 years of covering the Food and Drug Administration,” he writes.

The government tried to work with the startup, he contends, but 23andMe made that impossible: “This is not the story of a big regulator choosing to squash a small company, but of a company that decided that it didn’t have to follow the rules.”

He concludes:

We need something like 23andme to help develop systems for letting people know how to deal with this genetic information, and for creating a world where people can actually start to deal with lots of health data. But outside of a crowd of libertarians and genoscenti, the company does not have the political support it needs for a fight against the FDA. And none of its high-minded ideals release it from the requirement the FDA wants to enforce: that a medical device has to work.

Mass-produced genetic testing is coming, and it’s going to get more reliable. If 23andme doesn’t deliver the breakthrough product, someone else will.

There are, however, two divergent views on what should happen next. Many medical professionals complain that the Internet has filled their examination rooms with self-diagnosing, second-guessing patients. If people can readily get their hands on details of their genetic makeup, that number could skyrocket.

Should the government have a firm hand in regulating the tests, possibly making them more expensive and less available? Or will people have cheap, easy, but largely unguided access to genetic data, and then have the freedom to act on that information as they so choose – even if their actions may not, in the end, be in their best interests?

What you don’t know won’t hurt you, as the saying goes. But what about what you do know?

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Talking Turkey About Lynch Syndrome – Webinar 11/14/2012


 

– Were you diagnosed with colon or rectal cancer before the age of 50?
– Was anyone in your family diagnosed with colon cancer before the age of 50?
– Was anyone in your family diagnosed with uterine (endometrial) cancer before the age of 50?
– Are there cancers across several generations on one side of your family?

If you answered YES to just one of these questions, it’s time to talk turkey about Lynch syndrome.

Lynch syndrome is an inherited genetic mutation, and having it increases your chance of getting colorectal cancer to 80%. Unfortunately, nearly every person living with Lynch syndrome is completely unaware of it.

Lynch syndrome also puts you at higher risk for brain, breast, kidney, melanoma, ovarian, pancreas, small bowel, stomach, or uterine/endometrial cancers. Knowledge is power and will help your medical team act more aggressively with their screening measures.

Brian Mansfield, a music critic for USA Today, didn’t know he had Lynch syndrome until he was diagnosed with colorectal cancer earlier this year at the age of 48. After his diagnosis, he began talking with his family about their health history, “then the family tree lit up like a Christmas tree.” Brian is chronicling his journey through a weekly USA Today online column, “My Semicolon Life.”

Join national patient advocacy group Fight Colorectal Cancer as we host Brian and his doctor, Dr. Bill Harb, a colorectal surgeon at Cumberland Surgical Associates, along with Associate Director of Human Genetics at Ohio State University Heather Hampel as they tell you more about Lynch syndrome and how to dig into the medical mystery that may be lurking within your family tree. With the holidays coming up, never has there been a more appropriate time to talk turkey…and Lynch syndrome.

**Fight Colorectal Cancer thanks Can’t Stomach Cancer, the Colon Club, Kidney Cancer Association, Myriad Genetics, and Ovarian Cancer National Alliance for their assistance with this webinar.**

FightColorectalCancer.org

My Semicolon Life: Just like that, I’ve got cancer by Brian Mansfield


My Semicolon Life: Just like that, I’ve got cancer

Brian Mansfield, Special for USA TODAY

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.

Another diagnosis

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.

Good news

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.

PHOTOS: A trip to New York, a promise fulfilled

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: Crossing the finish line with cancer by Brian Mansfield


My Semicolon Life: Crossing the finish line with cancer

USA TODAY‘s Nashville music critic finishes a chapter of his cancer story with a successful 5K run.

6:29AM EDT October 27. 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’ll chronicle his life with the disease — and with only a small part of his colon — in a series of weekly installments.

The chili-pepper boxers hadn’t come out in ages.

I bought them in Austin a good 20 years and about that many pounds ago. They never were practical for everyday use because, well, they don’t open in the front. I think I keep them only because they remind me of a dear friend who died too young.

Maybe that, and the fact that they don’t open in front, is why they seemed the perfect choice to wear at last weekend’s Undy 500 in Nashville. The run, which raises funds for the Colon Cancer Alliance, encourages participants to run in boxer shorts.

I look ridiculous in them, of course. Not even my black Johnny Cash T-shirt — another article of clothing I couldn’t fit into four months ago — made me look less silly, especially once I added the black knee-high compression socks I bought to help keep me from tearing any more calf muscles. But after posting detailed accounts of my bodily functions here and on Facebook for the past four months, I don’t embarrass easily.

Fortunately, friends from nearly every part of my life — from high school, from work, from my neighborhood — were willing to not only be seen with me, but to wear their own boxers and run.

One in particular, my pal Cindy, has never been more than a phone call away since the very start. If I remember correctly, I had to cancel lunch with her the day I got my diagnosis. We were part of a weekly lunch group, but I had no idea then that she’d be one of the first people to visit me in the hospital and to bring food to my family when I got home. As a runner who’d recently completed a half-marathon, she even agreed to pace me on the 5K.

Having not had a good run in three weeks because I kept getting hurt, the run concerned me, especially when I realized the course’s first mile went uphill. We started in front of the Country Music Hall of Fame and went straight up Demonbreun Street to Musica, a giant statue of dancing naked people you may have noticed recently on ABC’s Nashville during a video shoot for Hayden Panettiere’s character. The next mile cut through the Music Row area, going down 17th Avenue South to Edgehill Avenue — which, I didn’t realize until I had to run it, is so named because it’s on the edge of a hill — up to 16th Avenue South, then to Musica again. From there, it was all downhill, which was good, because by the time I got back to Musica, I felt like I was ready to throw up.

Cindy might have let me throw up, but she wasn’t about to let me stop. We started too fast because we didn’t want to run in a crowd. When she realized we were on track to make my dream pace — a goal I’d all but given up when injuries prevented me from training — she kept encouraging me, giving me our times at each mile marker, moving in front of me on the inclines so I could watch her feet instead of staring at the top of the hill, reminding me in the last stretch that “You can do anything for four minutes.”

Friends like Cindy have helped me all through my journey with cancer. From simple, reassuring Facebook posts to offers of substantial amounts of money, support has come from all over — from people I loved, from people I admired, from people I hardly knew. Most often, it came from places I wouldn’t have expected. I used to think I had a hard time making friends; now I realize I just had a hard time recognizing them.

According to Cindy’s running app, we crossed the finish line nine seconds under my dream goal: 29 minutes, 51 seconds. The official time had me just over, 30:20 — a reminder to never, ever slow down when the finish line’s in sight, no matter how well you think you’re doing. Either way, I couldn’t possibly have done that before my diagnosis. I guess that means I’m healthier now than I was before I had cancer.

My cancer story’s not over, though. I’ve only finished this chapter. Because of my genetic disorder, a new cancer is always a possibility; the scar across my bellybutton and the changes to my digestive process are daily reminders that my life will never be the same as before this summer and could suddenly change again. I can do things to minimize the likelihood that new tumors will grow. With my doctors, I can keep a vigilant watch to catch future problems early. But even if I never receive a 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.

I don’t think about beating cancer, though. We’re not in a competition. I absolutely understand why some people approach treating cancer like waging war, but, to me, it’s not a battle; it’s more of a workaround situation. Besides, right now, I don’t have cancer. I have Lynch syndrome.

Cancer is just a complication.

Music that makes me want to live

Cancer has changed the way I hear music, more than any other life event except marriage. Songs I once appreciated only on a surface level now strike deep at the core of my soul. Some inspire me; some terrify me. Others that I might have liked before I’ve got no use for now. I’ve also got more time to listen, whether it’s during my morning exercise time or while lying in a hospital bed. This week’s soundtrack to my cancer story comes from some of the musicians the world has lost to cancer. I admired all of them, and I knew far too many of them.

  1. Drift Away, Dobie Gray
  2. All Things Must Pass, George Harrison
  3. And When I Die, Laura Nyro
  4. Redemption Song, Bob Marley and The Wailers
  5. Last Dance, Donna Summer
  6. Turn Off the Lights, Teddy Pendergrass
  7. Inside My Love, Minnie Riperton
  8. Son of a Preacher Man, Dusty Springfield
  9. I Just Want to Love You, Eddie Rabbitt
  10. The End of the World, Skeeter Davis
  11. Green, Green Grass of Home, Porter Wagoner
  12. Blue Suede Shoes, Carl Perkins
  13. And I Love Her, Chet Atkins
  14. Wysteria, Dan Fogelberg
  15. When I Go Away, Levon Helm
  16. There Is a Light, Duane Jarvis
  17. Walk By Faith, Stephen Bruton
  18. Keep Me in Your Heart, Warren Zevon
  19. One Dyin’ and a Buryin’, Roger Miller
  20. What a Wonderful World, Joey Ramone

My Semicolon Life: It’s not just your cancer by Brian Mansfield


My Semicolon Life: It’s not just your cancer

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’ll chronicle his life with the disease — and with only a small part of his colon — in a series of weekly installments.

  • USA TODAY reporter Brian Mansfield and his family. Clockwise, from top: Brian Mansfield, Nick Mansfield, Annalise Mansfield, Gracelyn Mansfield, Zac Mansfield. Nancy Mansfield is in the center.USA TODAY reporter Brian Mansfield and his family. Clockwise, from top: Brian Mansfield, Nick Mansfield, Annalise Mansfield, Gracelyn Mansfield, Zac Mansfield. Nancy Mansfield is in the center.

When I received my colon-cancer diagnosis in June, my surgeon wanted to test me for Lynch syndrome. A genetic disorder that’s the most common cause of inherited colorectal cancer, Lynch syndrome accounts for about 4,200 new cases of colorectal cancer each year, or between 2% and 5% of all cases. The patients who carry it, however, often look an awful lot like me, people in their mid- to late 40s.

Determining whether or not I had Lynch would affect the course of my treatment. If I didn’t have it, my surgeon would remove the tumor and several inches of colon to either side. If I tested positive, on the other hand, the likelihood of new tumors was so high that he would want to take out more. On the theory that the less colon I had, the less place there’d be for a tumor to recur, he would remove all but the last couple feet of my colon and rectum, just enough to keep me from needing a colostomy bag. Because of Lynch’s hereditary nature, a positive result also would have a big impact on my family.

It wasn’t a cheap test, my doctor said, about $4,000, and my insurance might or might not cover the cost (it did). Since nobody in my immediate family had ever had colon cancer, I figured the test would come back negative. Still, better to err on the side of caution now than have to undergo a second surgery because I wanted to do some cost-cutting.

Three months ago, I’d never heard of Lynch syndrome. But that didn’t stop me from having it.

Now I know more about it than I wish I did. The syndrome — named after Henry Lynch, a geneticist who has done groundbreaking research on hereditary cancer at Nebraska’s Creighton University — put me at an elevated risk for developing colon cancer. It’s also called HNPCC, or hereditary nonpolyposis colorectal cancer, but, to quote Leslie Nielsen in Airplane!, “that’s not important right now.”

What is important is that as many as 800,000 people in the USA may have this disorder. According to the national Centers for Disease Control and Prevention, as many as 98% of them may be undiagnosed, as unaware of their condition as I was.

Lynch syndrome is a defect in one of the mismatch repair genes, which correct errors during DNA replication. It’s like using a broken photocopier with no quality control, endlessly churning out flawed copies. Stack those flawed copies high enough, and they turn into a tumor like the one removed from my abdomen last month.

That tumor’s gone, but my copier’s still broken. There’s a 50/50 chance a new tumor will crop up some time in the next 15 years, if not in my colon, then maybe in my stomach. Or my small intestine, my urinary tract, or even my brain.

In general, Lynch syndrome carriers have an 80% chance of getting colorectal cancer during their lifetime. For women, that percentage is slightly lower, but their chances of getting endometrial cancer run as high as 60%. My particular variety of Lynch (there are several) comes with a slightly lower risk of colorectal cancers (fat lot of good it did me) but a much higher risk of gynecological cancers for women.

Though Lynch plays a part in only a small percentage of colon cancers, it’s more likely in cases where the patient is under 50. When there’s no immediate family history — as was the case with me — the likelihood of Lynch rises to 7%, according to my surgeon. Factor in a family member with colon cancer, and the chance that Lynch is involved goes up to about 30%.

Linda Bruzzone, founder of Lynch Syndrome International, was diagnosed with Stage 3 colon cancer in 2007 at age 55. Her brother, sister, father and an aunt all had Lynch-related cancers. She founded LSI in 2009 when “we couldn’t find anybody alive with the Lynch syndrome gene,” she says.

That all changed when the organization went online. “Things went absolutely berserk,” Bruzzone says. Now, in addition to the website, LSI maintains a Facebook page, and Bruzzone describes the culture of Lynch-cancer survivors and previvors that gathers there as a hopeful one.

My family already has benefited from our new knowledge. My father, who almost certainly passed this trait to me, had never had a colonoscopy, even though he’s 74. Since my diagnosis, he and my younger sister have both had their first colonscopies, and both had polyps removed. Left alone, those polyps could have turned cancerous within a couple years. (Polyps in people with Lynch tend to turn into cancer on a faster basis, my surgeon says.)

What signs might indicate Lynch syndrome in your family? Check your family medical history for three relatives with colorectal or gynecological cancers, especially if any of them were younger than 50 when they were diagnosed. The cases should span successive generations and also include at least one first-generation relative (a parent, sibling or child).

That last detail was the one that tripped me up. My paternal grandmother’s extended family had cancer all through it, but she’d had a hysterectomy in her 50s, thereby removing her most at-risk organs. My father was an only child. Since he and my sister had never had colonscopies, even if they had had cancer, none of us would have known.

At some point, my wife and I will get tests on our four kids, the oldest of whom turns 21 next month. Each has a 50/50 chance of carrying the gene. The ones that do probably will have colonoscopies every couple of years starting in their early 20s. Endoscopies, to check for cancer in the upper gastrointestinal tract, will start around 30. The girls also will be screened regularly for gynecological cancers, most likely using a combination of ultrasounds and biopsies. Barring a major medical advance, their doctors may recommend preemptive hysterectomies when they reach their 30s.

There’s a pretty good chance I’ll be around to watch them go through all that, and listen as they blame me for it. My heart will ache for them every time, but I’ll happily take the grousing about colonoscopy prep, or even a life-altering surgery, to keep them from having to hear the words “We found cancer.” I may have bought my father a few extra years; maybe my situation can buy my kids a whole lot more.

It’s like Bruzzone told me: “The difference in our generation and the previous one is that we’re surviving.”

Music that makes me want to live

Cancer has changed the way I hear music, more than any other life event except my marriage. Songs I once appreciated only on a surface level now strike deep at the core of my soul. Some inspire me; some terrify me. Others that I might have liked before, I’ve got no use for now. I’ve also got more time to listen, whether it’s during my morning exercise time or while lying in a hospital bed. These songs form part of the soundtrack to my cancer story.

1. Stories to Tell, Dave Barnes

2. Lifetime, Emeli Sandé

3. Don’t Let Me Fall, The Bluefields

4. If You Ever Get Lonely, Love and Theft

5. From There to Back Again/Pacific Coast Highway/Summer’s Gone, The Beach Boys

My Semicolon Life: Welcome to the cancer club by Brian Mansfield


My Semicolon Life: Welcome to the cancer club

By Brian Mansfield, Special for USA TODAY

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’ll chronicle his life with the disease — and with only a small part of his colon — in a series of weekly installments.

  • Melissa Mitchell, left, and USA TODAY Nashville correspondent Brian Mansfield have Lynch syndrome, which increases the risk of colon and other cancers.Melissa Mitchell, left, and USA TODAY Nashville correspondent Brian Mansfield have Lynch syndrome, which increases the risk of colon and other cancers.

Jill Chang remembers the poster about Lynch syndrome that hung in her physician’s office. “Does cancer run in your family?” it asked in bold letters of warning-sign red. Cancer did run in Chang’s family, and as she read about the types — colon, uterine, stomach, ovarian —most often associated with the hereditary genetic mutation, the 40-year-old mother of two thought, “Oh, my gosh, this looks like my family.”

If Chang, now 41, had known sooner that she carried Lynch syndrome, she would have done things differently. When she underwent her colon cancer surgery at age 30, she would have opted for a pre-emptive hysterectomy at the same time. Then she wouldn’t have had endometrial cancer last year. She wouldn’t have had to undergo that round of chemotherapy. Her curly blond hair would never have fallen out.

I met Jill and others with Lynch syndrome this past week at a seminar to train us to speak on behalf of people with this genetic disorder that affects as many as 800,000 people in the USA, more than 90% of whom don’t even know they carry it. I previously had exchanged Facebook messages with a few people who carry the mutation, but I hadn’t encountered them in person. Now I know their faces, their families and their fears.

Diane Shak let a doctor’s horror stories about hysterectomies and double mastectomies scare her away from genetic screening nearly 20 years ago, after her brother’s colon cancer diagnosis. Only after an older sister’s diagnosis of both Lynch syndrome and colon cancer did Shak get her own test.

Melissa Mitchell’s family knew that cancers ran among them, they just didn’t know all the different types were related. Mitchell, who is working on a second bachelor’s degree in criminal justice, can trace her cancer history back to 1867, and many of her relatives died in their 20s and 30s. Eleven members of her family have been tested for Lynch syndrome. Seven tested positive; three have had cancer. Mitchell had colon surgery four days after her Lynch diagnosis in May 2011.

The broken genes of Lynch syndrome most often result in colon or, in women, uterine cancers, but it puts carriers like me at an elevated risk for a variety of cancers. It can manifest itself in many ways. Miriam Masia, for instance, a music therapist from Miami, got diagnosed after having seven aggressive skin cancers removed. Cindy Timms, a theater and debate teacher in Texas, had a long history of tumors and migraines before developing colon cancer.

Laura Simonetti has never had cancer, but her father did. After her father underwent his third major surgery for colon cancer, a nurse recommended genetic testing to Simonetti. Together with a genetic counselor, she mapped out her family cancer history, gathering stories of illnesses from aunts, uncles and cousins. One week after the birth of her daughter, Simonetti tested positive for Lynch in December 2007. Now in her mid-30s, she’s considered having a hysterectomy to prevent the occurrence of uterine or ovarian cancer (she’s decided to wait).

Those of us who came together journeyed from a dozen different states. At 48, I was right in the middle of the group, age-wise, but I was also the newbie, since I received my Lynch diagnosis just two months ago. Some of them have been living with their diagnosis for many years and through multiple treatments.

Whatever differences we may have — age, gender, ethnic background, number of primary tumors — one thing we all have in common is our concern for our families. Having a name and a reason for our predisposition to cancer allows us to do something about it, not only for ourselves but for those around us. It allays our fears with hope.

I like to think that I bought my father a few years when his first colonoscopy, at age 74, revealed two polyps, one of them very large. Gene von Mosch, a financial planner, is convinced that he saved the life of his 27-year-old daughter, who was diagnosed with colon cancer after a positive Lynch test.

Diane Hardesty runs a bookkeeping and tax practice and uses a spreadsheet to track her family’s cancer history. She knows of 13 family members who have had cancer, 10 of whom have died. Not one of those deaths occurred after her family learned about Lynch syndrome. Hardesty’s doctors have caught pre-cancerous areas of her body six times. Thanks to vigilant screening because of her Lynch diagnosis, none of them have ever turned into cancer. She now advocates tirelessly on behalf of Lynch screening.

Five generations of Chris Moyer’s family have had hereditary cancers, including a cousin who died of brain cancer at 19. Moyer had his first colonoscopy when he was 21. He’s now 32 and has had a total of three. After his mother’s diagnosis with Lynch, he expected to need colonoscopies every two to three years for the rest of his life. But he tested negative for Lynch. As a result, Moyer is done with colonoscopies for a while. He won’t have to get another until he’s 50. And neither will his two sons.

If your family history looks like any of ours, you know how relieved he is. And if your family history looks like ours and you haven’t been screened for hereditary cancers, you might consider talking to your physician about it.

Music that makes me want to live

Cancer has changed the way I hear music, more than any other life event except my marriage. Songs I once appreciated only on a surface level now strike deep at the core of my soul. Some inspire me; some terrify me. Others that I might have liked before, I’ve got no use for now. I’ve also got more time to listen, whether it’s during my morning exercise time or while lying in a hospital bed. These songs form part of the soundtrack to my cancer story.

1. Even If It Breaks Your Heart, Eli Young Band

2. Sweet Spot, Tift Merritt

3. Worry Walks Beside Me, Michael Kiwanuka

4. Safety Line, Sixpence None the Richer

5. When I Saw You Leaving (For Nisey), Alan Jackson

My Semicolon Life: 5K prep tougher than cancer surgery, by Brian Mansfield


If I’ve learned one thing in recent weeks, it’s that I can put up with almost any kind of pain for an hour.

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’ll chronicle his life with the disease — and with only a small part of his colon — in a series of weekly installments.

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How in the world am I having a harder time getting ready for a 5K than I did recovering from cancer surgery?

This weekend, I’m supposed to run in the Colon Cancer Alliance’s Undy 5000 Nashville run. Participants are encouraged to run in their boxer shorts. I’ve got a pair with chili peppers on them that I bought about 20 years ago. They’re still a little snug, but I think they’ll work.

I’ve been planning this since shortly after my diagnosis in June. At first, I expected to be in the middle of chemo treatments and have to walk it. When I found out that chemo wouldn’t be necessary, I started planning to run.

COLUMN: Last week’s installment

MORE: Follow Brian on Twitter

PLAYLIST: Music that makes me want to live

Initially, my training went well. Before I left the hospital, I was walking a mile a day, albeit in several short bursts. I kept walking when I got home; within a month, I could cover 5 miles in a wide loop around my neighborhood.

My first attempts at running hurt a little, jostling inner parts that hadn’t quite settled into their new positions. Eventually, though, I settled into a nice training regimen, alternating days of walking and days of running.

By mid-September, I had figured out a stride that felt natural. Apparently, my body operates at 150 beats per minutes. Maybe it has something to do with coming of age during the early ’80s: Several of the records that I remember causing the most visceral responses — R.E.M’s Radio Free Europe, Bruce Springsteen’s No Surrender, The Cure’s Just Like Heaven, not to mention Twister Sister’s We’re Not Gonna Take It and Quiet Riot’s Cum on Feel the Noize cover — all operate within a couple beats of 150 bpm. That tempo would put me on pace for a 30-minute 5K, which felt too good to be true of my first official run.

Just as I got to where I could run the right distance, run the right time, my body started falling apart.

My feet went first, developing tender spots just below the outer side of both ankles that made standing and walking difficult. I targeted a pair of overworn shoes as the culprits and threw them away, but the pain kept me off the street for a week.

Then, I tore a calf muscle during my first run back. Five houses from home, with my earbuds in, I heard the pop. The injury slowed me down enough that my wife and daughter could keep up with me when we went to New York a couple of weeks ago for a surgery-delayed vacation.

The morning we left New York, I cracked a tooth all the way down one root, biting into a slice of pizza. Before I could have an oral surgeon extract the tooth, I spent several days trying to maintain the fine line between passing out from pain and throwing up from pain meds. I got the balance wrong one day and had to cut short an interview, vomiting before I could return the phone to its cradle.

Wednesday night, I went for my first run in two weeks. From my first steps, I could tell my body wanted to run. My feet did exactly what they were supposed to, hitting right behind the ball, rolling forward and flipping back. I didn’t push myself at all, and my movement felt like an easy glide.

A few minutes in, though, and I started feeling every little twinge in my leg. Maybe a muscle was acting up, or maybe I was gun-shy, allowing my imagination to run away with me. Either way, I didn’t want to take any chances, so I eased up on my pace — running three minutes, walking three minutes.

Then, during the song that was playing when I tore that muscle two weeks ago — Joan Jett’s version of ZZ Top’s Tush — my left calf started seizing up again. Not enough to stop me, but enough to spook me. By the time I got home, my right leg had started pulling tight, too.

I went out again Thursday but took it real easy, going about 2 miles but running maybe a third of it. Right now, my calves are so tight that, if my muscles were guitar strings, I wouldn’t need a capo to raise the pitch. It’s not the kind of feeling I want to take into a 5K run.

But if I’ve learned one thing in recent weeks, it’s that I can put up with almost any kind of pain for an hour.

All I have to do is keep moving.

Music that makes me want to live

Cancer has changed the way I hear music, more than any other life event except marriage. Songs I once appreciated only on a surface level now strike deep at the core of my soul. Some inspire me; some terrify me. Others that I might have liked before I’ve got no use for now. I’ve also got more time to listen, whether it’s during my morning exercise time or while lying in a hospital bed. These songs form part of the soundtrack to my cancer story.

1. Meant to Live, Switchfoot

2. Get On Your Boots, U2

3. Run Run Run, The Explorers Club

4. Everybody Talks, Neon Trees

5. Cruise, Florida Georgia Line

6. Enola Gay, Orchestral Manoeuvres in the Dark

7. Constructive Summer, The Hold Steady

8. Believer, Goldfrapp

9. Something’s Got a Hold On Me, Etta James

10. Use Me, Bill Withers

My Semicolon Life: After cancer, New York beckons, by Brian Mansfield


A vacation delayed by cancer surgery finally happens, as USA TODAY‘s Nashville music critic keeps a promise to his daughter to take her to New York when she’s 10.

6:23AM EDT October 13. 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’ll chronicle his life with the disease — and with only a small part of his colon — in a series of weekly installments.

The “color mood analyzer” at M&M’s World Times Square had me pegged. “You put your worries aside and had time to laugh today,” the machine told me, after it said my mood color was orange. “You deserve a treat!”

No amount of chocolate, though, could have been a better treat than my trip to New York this past week with my wife, Nancy, and 10-year-old daughter Gracelyn.

This was a trip six years, then another three months, in the making.

When Gracelyn was 4, she started pestering us to take her to New York. Gracelyn is the kind of child who, when her friends’ mothers would tell her, “We should get you two together for a playdate some time,” would look them straight in the eye and say, “Great. When?” We hadn’t yet realized this when she started asking about New York, so, just to put the conversation to rest, we eventually told her we’d take her when she was 10.

She’s been planning this trip ever since.

COLUMN: Last week’s installment

MORE: Follow Brian on Twitter

MORE: ‘Music that makes me want to live’ playlist

Finally, Gracelyn turned 10. We picked a date and put it on our calendar. We priced hotels and prepared to book flights. Then I got cancer. The doctor scheduled my surgery for the day before we were supposed to leave.

When Nancy and I broke the news of my illness to our kids, Gracelyn processed the information by asking a series of questions to determine what impact this development would have on her life. Finally, she got to the one we were dreading: “Will this affect my trip to New York?” That’s when she cried.

Gracelyn’s like me, in that she likes to figure the angles, work through all possible scenarios in her head so she’s ready for any eventuality. She didn’t talk much about New York after we postponed the trip, but I knew it was never far from her mind. It hadn’t been for years.

I agonized about delaying the trip. Worries about surgery and chemotherapy paled next to breaking a 6-year-old promise to a 10-year-old girl. The idea of moving the trip to her fall break introduced too many variables that I had no way to control. Would I survive surgery? (Dying wasn’t a big statistical risk, but one thinks about these things.) Would I be in the middle of chemotherapy? Would I be well enough to travel? Would I have the energy to keep up with her?

As things turned out, the delay might have been the best thing that could have happened. July was miserably hot in New York, with temperatures reaching 100 degrees during the time we’d initially planned to be there. Though she’s normally full of chatty enthusiasm, Gracelyn wilts quickly in the heat. I hate to think how she would’ve handled a sweltering subway platform or a seven-block walk then.

Even better, by the time we finally got to go, I’d been given the all-clear by my doctors. If we’d squeezed in a summer trip, the cancer would’ve shadowed us the entire time. As it was, we barely gave it a thought.

Instead, we set down our bags in our hotel room last Saturday and immediately set off for Coney Island, where Gracelyn wanted to eat a hot dog at Nathan’s (her No. 1 goal, believe it or not, ranking slightly ahead of visiting the American Girl store). She waded in the chilly October surf, swung in a car on Deno’s Wonder Wheel and shrieked her way through the drops and curves of the Cyclone.

During our five days in New York, Gracelyn marveled at dinosaurs in the Museum of Natural History and picked out skyscrapers from the observation decks of the Empire State Building. She brunched at Cafe Lalo, listened to the waitstaff sing at Ellen’s Stardust Diner and ordered lamb and noodle soup from Chinatown’s Xi’an Famous Foods. She shopped at Macy’s and posed between the lions at the public library. She ate pizza in Greenwich Village and sipped frozen hot chocolate at Serendipity 3.

She also hunted down locations from two of her current favorite movies, Enchanted and Breakfast at Tiffany’s. She rode in a boat on the lake in Central Park, just like Amy Adams’ Giselle, even going under the Bow Bridge. She looked in Tiffany’s display window, just like Audrey Hepburn’s Holly Golightly, but without the pastry.

The entire time, Gracelyn caromed from childhood glee to almost-teenage cool, never more so than on Tuesday. That day, a morning that began with picking out a doll and lunching at the American Girl store gave way to an afternoon in Chelsea getting her ears pierced at Studio 28 Tattoos. That night, she attended her first Broadway play, The Phantom of the Opera, then headed to M&M’s World, where I got my mood read and she picked out a pound of pink and purple and silver and aqua candies.

Eventually, we got so busy experiencing our New York trip that we started forgetting to document it. Neither Nancy nor I got out the camera for what might have been Gracelyn’s favorite moment, at least until she got her ears pierced — successfully hailing a cab near Herald Square. We were having too much fun watching her step out onto the edge of Sixth Avenue with her hand stretched above her head, staring down an approaching taxi driver. We don’t have a picture, but we’ll never forget what she looked like.

I don’t know that this trip felt sweeter for having come on the other side of my cancer journey. I’m sure it would’ve felt bittersweet had we taken it this summer before the surgery. But it did feel like the last piece of unfinished business from this summer. Now it’s time to start looking toward the future. What a treat.

Music that makes me want to live

Cancer has changed the way I hear music, more than any other life event except marriage. Songs I once appreciated only on a surface level now strike deep at the core of my soul. Some inspire me; some terrify me. Others that I might have liked before I’ve got no use for now. I’ve also got more time to listen, whether it’s during my morning exercise time or while lying in a hospital bed. These songs form part of the soundtrack to my cancer story.

1. The Prettiest Girl in the World, Michael McDermott

2. A Little Biblical, Band of Horses

3. Like Ice Cream, Divine Fits

4. Au Cinema, Lianne La Havas

5. Love Is a Many Splendored Thing, Jeff Lynne

Next week: Ready to run

My Semicolon Life: Putting cancer in context


 

USA Today

USA Today (Photo credit: Wikipedia)

6:05AM EST October 6. 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’ll chronicle his life with the disease — and with only a small part of his colon — in a series of weekly installments.

Working at McDonald’s taught me a lesson that came in handy this year.

My freshman year in college, I worked under the Golden Arches in Cambridge, Mass., halfway between MIT and Harvard. (I attended neither university, but one of the music schools across the Charles River in Boston.) One day, two guys came in and ordered two large fries on one ticket. So I went to the fry bin and picked up the scoop.

The scoop is designed to put the proper amount of fries into each red box, and I filled the first box just right. I must have screwed up my approach angle or something on the second one, because I overstuffed it, way too full. Now, I didn’t want to dump fries out of the box and back into the bin, especially with the guy who ordered them standing just a few feet away. And I was reluctant to compound my mistake by adding more fries to the first box and giving two people more food than I was supposed to. Instead, I tried to make the best of a bad situation and just let the second guy have more fries than he’d actually ordered. Sure, he had more fries than his friend, but they’d put both boxes on the same order, so if the first guy wanted a few more fries, I figured the second guy could share. Shouldn’t be a problem, right?

Wrong. Oh so wrong.

COLUMN: Last week’s installment

MORE: Follow Brian on Twitter

The first guy was furious that I had shortchanged him on fries. It really didn’t help when I tried to explain that, no, he’d gotten exactly the right amount of fries; he should be happy for his friend, who had received more than he had paid for. I wound up giving him more fries, too, simply to keep the peace, but by then nobody was happy.

That’s when I learned: It’s not that people want life to be fair, they just don’t want to have less than the next guy.

When I got diagnosed with cancer this summer, several people commented to me how unfair life was. This shouldn’t happen to a good guy like me. It shouldn’t happen to a guy my age. It shouldn’t happen to a father with young kids. But I don’t play that game. And I don’t ask the “Why me?” question. I don’t know why me. Figure I won’t ever know for sure. Don’t much care. If I’m going to question life, I’m much more likely to ask, “Why not me?” As far as fairness goes, I’ll take that to the baseline. 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.

This year may not have gone the way I would have chosen, but I don’t have to look far to know how good I’ve got it.

A couple of weeks after my surgery, a friend from church landed wrong while diving into a lake in Arkansas, breaking the L1 vertebra in her lower back. She should fully recover, but she’ll spend a year doing it.

A friend of my daughter had her entire family murdered in her home this summer. To escape, she had to pass by her mother’s body. (And, let me tell you, one of the saddest phone calls you’ll ever get is one from your 8-year-old daughter asking if it’s OK for her to go to a funeral home visitation and see her friend.)

The day after my birthday last week, one of my dearest friends — he and his wife were the first people Nancy and I told when she got pregnant with our first child 21 years ago — died suddenly, following 12 years of debilitating headaches that prevented him from working. He would have been 51 on Wednesday.

And of all the people I’ve encountered who got the colon cancer diagnosis around the time I did, I’m the only one who didn’t have to do chemo.

I’ll take my year over any of theirs.

Cancer threw me for a loop. But now, almost three months after surgery, I look better than I have in years, thanks to the weight loss. I’m in better shape than I was before my diagnosis; I’m going to run a 5K in three weeks. I can point to a friend who had a pre-cancerous polyp removed specifically because he got a colonoscopy after learning of my situation. Likewise, my father got his first colonoscopy after my surgery and had a large polyp removed before it could turn cancerous.

This isn’t about somebody else always having it worse. It’s not about lowering expectations. It’s a little bit about appreciating what you have instead of resenting what you don’t. However, I think it has more to do with realizing that, as much as I love to tell my story, the real story isn’t really about me.

And I’m happy just to have a part in that story. Cancer or no, I’ve gotten far more from it than I deserve.

Music that makes me want to live

Cancer has changed the way I hear music, more than any other life event except marriage. Songs I once appreciated only on a surface level now strike deep at the core of my soul. Some inspire me; some terrify me. Others that I might have liked before I’ve got no use for now. I’ve also got more time to listen, whether it’s during my morning exercise time or while lying in a hospital bed. These songs form part of the soundtrack to my cancer story.

1. When It Don’t Come Easy, Michael Stanley

2. Emmylou, First Aid Kit

3. Only God Could Love You More, Jerrod Niemann

4. Till My Body Comes Undone, Charlie Peacock

5. Too Soon to Go, Tift Merritt

My Semicolon Life: Good news on the cancer front


 

USA Today

USA Today (Photo credit: Wikipedia)

My Semicolon Life: Good news on the cancer front

Brian Mansfield

Music critic compares his CT, pathology reports

Chemo’s off the table for now

6:00AM EST September 29. 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’ll chronicle his life with the disease — and with only a small part of his colon — in a series of weekly installments.

I thought by now I would have seen an oncologist.

It’s the weirdest thing: When I got diagnosed with colon cancer back in June, every doctor I saw told me about these great oncologists they could send me to. Then, after the surgery, they just quit talking about them. Nobody ever told me not to see an oncologist, they just stopped bringing up the subject.

When my surgeon visited me in my hospital room after the operation, he said that I might not have to undergo chemotherapy. But I figured I’d at least consult with an oncologist. After all, I had a doctor — my gastroenterologist — in charge of finding the cancer. I had another — the surgeon — in charge of removing it. Surely it was a good idea to have a doctor in charge of the cancer itself. That only made sense, right?

COLUMN: Last week’s installment

MORE: Follow Brian on Twitter

MORE: ‘Music that makes me want to live’ playlist

Now, I have a natural inclination to want to avoid people who can pump poisons into my body, even if those poisons might help me in the long run. But oncologists were on my mind last week after I finally thought to ask for a copy of my post-surgery pathology report. I had gotten great pictures, some of which would make wonderful Halloween avatars for my Facebook page, but for some reason it had never occurred to me to look at the report about what my surgeon had found when he cut me open.

The report from my CT scan and my pathology report sound like they’re talking about two different cases.

My stomach sank after I saw my CT report. It talked of enlarged lymph nodes and suggested my tumor might have extended beyond the bowel wall. Based on that report, my surgeon anticipated at least a Stage II cancer. I would have considered myself fortunate to get Stage IIIA, where the cancer’s either in the muscle layers of the colon and one to three lymph nodes or it’s in four to six lymph nodes but not in the muscle. The more I read the report, the more I steeled myself for worse news.

The pathology report, by contrast, read like the next best thing to “happily ever after.” The tumor didn’t get beyond the wall. It didn’t get into any of the 36 lymph nodes removed and tested. It didn’t get into the blood vessels. There were no signs of cancer in the surgical margins.

Basically, it was just a big ol’ tumor that hadn’t gone anywhere. No wonder I had friends tell me my surgeon came into the waiting room practically skipping.

The only thing in the pathology report that threw up a red flag was a separate polyp that my colonoscopy hadn’t caught. But my surgeon had taken that out along with my tumor, my appendix and most of my colon, so it wasn’t going to be creating any problems in the future.

At my two-month post-surgery checkup, I asked my surgeon if he planned to send me to an oncologist. He shrugged off the idea. He’d send me to one if it eased my mind, but he’d be perfectly happy to handle all the necessary future screenings in his office.

As for treatment, “there’s some debate about whether Stage II patients should have chemotherapy,” he says. “Nobody thinks Stage I patients should.”

Well, OK, then.

Until cancer decides to pop back up inside my body — and that could be a year from now, or 15, or 40, or never — I’m done with treatment.

We’ll keep a vigilant eye out for potential trouble, and we’ll start with the findings of that first CT report. My right kidney has a nice-sized cyst on it, but that’s probably no big deal. More worrisome is the “nodular focus” near the base of my right lung. “A metastatic focus cannot be excluded,” the report states. In other words, might be nothing, might be cancer.

In three months, I’ll get another CT scan to take a second look at my lung. Six months after that, I’ll be coming up on my one-year cancer anniversary, which we’ll celebrate with two big jugs of Gatorade and another colonoscopy.

Those things are months away, though, and I can’t do a thing about either of them right now. I can, however, help a 10-year-old plan her long-awaited and once-delayed trip to New York.

We leave next Saturday.

Music that makes me want to live

Cancer has changed the way I hear music, more than any other life event except marriage. Songs I once appreciated only on a surface level now strike deep at the core of my soul. Some inspire me; some terrify me. Others that I might have liked before I’ve got no use for now. I’ve also got more time to listen, whether it’s during my morning exercise time or while lying in a hospital bed. These songs form part of the soundtrack to my cancer story.

1. Thankful N’ Thoughtful, Bettye LaVette

2. Founding Fathers, Will Hoge

3. Every Road Leads Back to You, Richie Sambora

4. Live in This City, Dragonette

5. Lover of the Light, Mumford and Sons

via My Semicolon Life: Good news on the cancer front.

 

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