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cancer survivor

What I Found When I Lost My Ability to Eat

The following essay is a bit off-topic for my blog, but I wrote it a while ago and wanted to share this story with my readers for whatever it’s worth.

Have you ever heard the expression, “Some people eat to live; others live to eat”? I had always thought of myself as an “eat to live” kind of person, which is to say, someone who didn’t care all that much about what I consumed, but ate mostly for sustenance. That changed forever, though, in the winter of 2010, when I was 43 years old.

After a harrowing stage III colorectal cancer diagnosis, two major abdominal surgeries, 31 radiation treatments, and more than seven months of chemotherapy, I realized slowly but surely that I couldn’t eat. Now, everyone knows cancer patients struggle with nausea and poor appetite and, at first, I thought this was my problem. My oncologist expressed concerns, however, about my rapid weight loss from 102 to 76 pounds, as well as the seriously low blood pressure and extreme weakness that came with it, and put me on total parenteral nutrition (TPN). This meant that on a daily basis I prepared a large bag of milky white fluid and hooked it up to a needle accessing a medi-port that had been surgically installed in my chest. For 12 hours a day, a pump I carried around in a backpack transported the liquid into my veins, giving me all the calories, electrolytes, and nourishment I needed to stay alive while, ironically, a team of doctors worked to save me from death by cancer.

At first, I felt grateful and relieved to start the TPN, which could be viewed, quite legitimately, as a form of life support. But after cancer treatment ended and I was, to everyone’s great relief, in remission, I still couldn’t eat. Anything. If I dared to try, within hours I would inevitably feel nauseated. The nausea, mixed with abdominal cramping, would continue unabated for up to 24 hours until finally I would vomit so violently and profusely that one would think there was no fluid left in my body. Anti-nausea medication did nothing but make me drowsy. Without the TPN I would have literally wasted away.

My battle with cancer was hellish, but this latest development made me feel, somehow, less than human.   I mean, what is more basic in life than the ability to consume food through one’s mouth?

To say I “missed” eating is an extreme understatement. As the days of going food-free turned into months, I grieved my inability to eat like an amputee grieves the loss of her leg. My feelings swung wildly between scolding myself for not simply being thankful to be alive, to wondering if anyone would ever be able to understand what I was going through. Finally, my emotions plunged into sheer self-pity and despair, complete with crying jags, as I lay in bed wondering how I could go on if I could never again eat my mother’s chicken soup, much less a soft chicken taco, or a lobster dinner on my birthday. I also worried that, like some freak of nature, I would be dependent on TPN for the rest of my life.

I daydreamed about my favorite foods going back as far as my childhood, including things I hadn’t eaten or thought about in years, such as fried chicken, Philly cheesesteaks, and Italian hoagies. I began to watch the Food Network’s cooking shows, like “Barefoot Contessa,” for hours on end because I was too sick to do much else besides watch TV. Of course, I would fantasize about eating what Ina Garten was cooking, but ultimately the techniques started sinking in and I became tempted to try to make the dish myself. Now this might seem peculiar, given that I actually dreaded cooking prior to TPN. And I have no great psychological explanation for what happened next.

To try to bring myself out of my food-deprivation funk, I began researching recipes on the Internet, and cooking and baking for my family. I especially liked and scoured that website looking for dishes my entire family, including my picky 8-year-old, would enjoy. Besides reading the recipes, I would pore over the many comments that followed and tinker with the recipe based on the advice of home cooks who had already tried it.  Inexplicably, something I began as a desperate, almost pathetic, way of reconnecting with food and my family became a hobby and a major source of pride and relaxation in my life. Even if I couldn’t eat with my family, at least I could be present while they ate food that I prepared for them with love and care and I could dine (albeit vicariously) with them. My cooking skills had improved by leaps and bounds and they were the direct beneficiaries.

Fast forward to Spring 2011, 14 months after I started TPN. My doctors finally determined the cause of my inability to eat. Bands of scar tissue (adhesions) had formed on my intestines due to multiple abdominal surgeries. The adhesions had led to chronic intestinal obstructions that had, in turn, physically prevented the food from making its way through my digestive system. As a last resort, I underwent a nine-hour, highly intricate operation with no guarantees and the goal of removing scar tissue while protecting the integrity of my remaining bowel. It took a lot longer to recover than expected and I’ll admit I started to think that this last-ditch attempt to regain my ability to eat had failed. My intestines had completely shut down and I wondered if the surgery had actually made things worse. Then, months later, the sun came up and my intestines suddenly and miraculously decided to start working again, the way they should.

Slowly, over many months, I added more and more to my diet, progressing from clear liquids to creamy soups and puddings, to low-fiber foods such as chicken, white rice, and potatoes, and all the way to raw fruit, salads, and the occasional box of popcorn at the movies. I celebrated each rediscovered food with the excitement of a toddler having cake for the first time. Friends and family took me out for special dinners to my favorite restaurants. Feeling better in every way, I started entertaining again—hosting homemade holiday dinners and a fabulous “wine and dine” party where every course was paired with a different wine. I made the entire four-course meal, including a refreshing yellow tomato gazpacho with cilantro and my hero Ina Garten’s delicious mustard-roasted red snapper.

Without question, I enjoy food more now than ever before and have become a more adventurous eater. I used to be content to eat and serve my family bland, uninteresting meals, but now I regularly cook with a variety of fresh, healthy ingredients, herbs, and spices, and continue to try new recipes. It is fair to say I am no longer an “eat to live” kind of person. Rather, I am a cancer survivor who is so very grateful—both to be alive and able to eat.