It’s Hard – But it’s Survivable

I’ve always had a complicated relationship with food.

It started when I was around five years old. Until then, I was a fairly normal-sized blond child with blue eyes, although perhaps a bit  pudgy-faced. I don’t remember this, but there is photographic evidence.

At around the age of  5, I apparently pissed off the universe somehow, and almost overnight, I became a fat, brown-haired, brown-eyed schlump.

Every school has the fat kid. That one kid who is so obese, he suffers through a life of derision, bullies, shame and a need to find creative ways to avoid the showers after gym class. That was me in my school in Iowa. Well, there was one other kid who was fatter than me, but he was kind of a stoner outcast. This gave him the 1970s Iowa-version of street cred. I was fat and a tenor in choir. My fate was sealed.

My senior year in high school I finally got fed up with it (no pun intended). I lost a bunch of weight through a combination of not eating and, well, we’ll call them “diet pills” and just leave it at that. (Although I do have a story about the “diet pills” making me think that a stapler on a teacher’s desk was a frog, but we’ll leave that for another time).

That complicated relationship with food continued and I got fat again and skinny again and fat again and skinny again. It’s amazing how much I have in common with Oprah. I am what she might call an “emotional eater.” I eat when I’m happy, I eat when I’m sad, I eat when I’m stressed, I eat when I’m bored. I just eat. I have tried nearly ever illicit drug known to man in my life but none of them ever gave me the “high” that a really good cheeseburger gives me.

I think the heartburn started when I was in my 20s. I don’t really remember because it just became such a regular part of my life. I’d eat; I’d get heartburn, bad heartburn. Like need-to-sleep-sitting-up-in-a-chair heartburn. But this was the late 1980s and acid reflux wasn’t a “thing” yet.

As the TV commercials would have had you believe, if you got heartburn you should take a Tums or a swig of Maalox. That’s what you did. And even when acid reflux and the “little purple pill” became a “thing,” well, I had the Maalox. It was fine.

Then in 2005, when I was in my late 30’s, I realized I wasn’t getting heartburn anymore.

I hadn’t really noticed that it had gone away or how long it had been gone, I just one day sort of said, “Hey… I haven’t had heartburn in a while!”

I was happy about that on many levels but I thought it was weird, so I set out on the Internet to research the phenomenon. That’s how I found out about Barrett’s Esophagus.

I was sure that’s what it was. A visit to a gastroenterologist and an endoscopy confirmed circumferential Barrett’s, with several spots of low-grade dysplasia.

I did all the stuff you are supposed to do.  I went on the stomach medication, tilted my bed, got regular endoscopies and modified my diet.

Okay, that last one is totally not true but I thought about it often when I was eating a cheeseburger or a slice of pizza at 2 a.m.

For several years I danced around the various procedures that are out there to remove the Barrett’s, because I knew there was a good chance  Barrett’s could become esophageal cancer and  that would involve lots of unpleasantness. I wanted to get rid of it if I could.

The trouble involved the cost, the relatively “experimental” nature of the treatments, and the fact that my insurance wouldn’t pay for them until the Barrett’s had progressed to a more serious level. If I had known then…

In March of 2011 I was laid off from work, so when the time came up for my annual endoscopy I didn’t get it. I was concerned about the cost once again. The one in 2011 had looked really good and my gastroenterologist said it was fine to wait until I got a new job. Who knew that would take a year?

In 2012, newly-employed, I went for an endoscopy. The news that I had stage 1 esophageal cancer was beyond shocking. I had been getting these tests so frequently; they had become nothing more than a day off work and really good drugs paid for by the insurance.

I wasn’t expecting anything other than the usual and certainly not a cancer diagnosis.

I told my boss, “When one finds out one has cancer, one gets the rest of the day off.”

I believe that rule it should be in the employee manual.
I spent a lot of time on the web and found the information there alternately vague and terrifying. I spent a lot of time trying to balance the two sides of my personality. One side believes that knowledge is power and therefore wanted to read every last word ever written about esophageal cancer. The other side believes that the dumber you are the happier you are and so I would pretty much stop reading as soon as things got scary and they got scary fast, even with a stage 1 diagnosis.

Writing has always been therapy, so I immediately set to work documenting my journey on my website illeattothat.com, where I posted pretty much everything that came to mind, no matter how silly, serious, petty or profound. It helped me enormously to share my story and it generated an almost shocking level of support from friends, family and strangers.

My surgery was on Aug. 17, 2012. There were complications, but I survived it. The recovery was painful, but I survived it. A brief scare that the cancer had returned and a second surgery in February caused some setbacks, but I survived them.

The 70-pound weight loss, the change in what and how I can eat, and my seemingly endless struggle with food has been rough, but I am surviving it. And over the last few weeks I have gotten a clean PET scan and a good-enough (as in no cancer detected) endoscopy so I’m finally, officially calling myself an esophageal cancer survivor.

It was while I was in the recovery room after the endoscopy that I saw the poster for ECAN. I wish the website had been around when I had first gotten my diagnosis because I would have liked to have heard from others who were going through the same thing. I hope that sharing my story will help someone else.

It’s hard… but it’s survivable.

2018-09-03T19:49:19+00:00
ECAN Day is Wednesday, May 29th! ECANDay.org.