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Living in Intervals: The Impact of Cancer Check Ups

How a Patient Named Sara Deals with Frequent Check-Ups for FAP Disorder


Updated: October 8, 2008

Every six months, Sara gets a double-scoping to find out if any of the hundreds of polyps in her gastrointestinal tract have turned cancerous. A doctor inserts a tube down her throat to inspect her stomach and beginning of the small intestine, and a different scope into her anus to inspect her pouch and the end of her small intestine. She had her colon and rectum removed at age 18; her small intestine is now directly attached to a pouch that serves as her rectum. Why? She has familial adenomatous polyposis (FAP), a genetic disorder that causes hundreds of polyps to grow and leads to colorectal cancer in 100% of people unless the colon and rectum are removed.

Sara has learned to incorporate this six-month ritual into her life. "Magnesium citrate," "EGD," and "pouchoscopy" roll off her tongue like they're everyday words. And giving herself a Fleet enema or two is no big deal. Just something that needs to be done when the time comes, like any other mundane task.

The emotional part of the every-six-month ritual is different though. It's like living her life in six-month intervals. Right after an all-is-well appointment, she feels free to make plans, set off in a new career direction, take some risks. She feels strong and healthy. But when the time comes to attend the appointment, to see if cancer has set in, her perspective on life changes -- on what's possible in her life, how much time she has to achieve it, how long she will be healthy, how many options she truly has.

I went to Sara's appointment with her yesterday, along with her mother, who has gone to every appointment Sara has ever had. When the nurse called Sara back, her mom and I waited in the room with a blank TV. We read our magazines. We watched a security guard patrol the hall, opening each door in the long hallway then closing it again. We stared at the receptionist, the elevator, the potato chip factory outside, the wallpaper, the carpet.

After Sara's procedure had ended, her mom and I went in to see her and listen to what Dr. Harris had to say. Turns out all is well! She still has hundreds of polyps in her stomach and small intestine, but that is par for the course with FAP. Dr. Harris sampled the polyps randomly and will let Sara know the results of the biopsies in about a week. After receiving the good news, we returned home. The sedation wore off pretty quickly and Sara was feeling good enough for a celebration dinner at Dave and Busters, where we ate well, played Whack-A-Mole, competed against each other in Skee-Ball and basketball, and abandoned the Dance Dance Revolution game because we didn't understand it.

In a perfect world, Sara would be polyp-free. But that isn't an option, so every six months we celebrate the absence of cancer. We celebrate the beginning of the "reset" period. We celebrate love and life and perspective. Every person who is routinely checked for cancer or a recurrence has celebrated these things. Every person who has attended routine follow-up appointments with their loved ones knows these feelings. If you want to share your experience living in intervals, please leave a message in the forum. I'd love to learn how others incorporate these "routine" check ups into their lives.

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