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The Neutropenic Diet: An Untold Story

by Jeff Tomczek on August 8, 2016

Jeff Tomczek, an Acute Lymphoblastic Leukemia survivor, tells us about his experience with the neutropenic diet after a stem cell transplant. Jeff, like many other cancer patients going through stem cell transplant or chemo, felt like he was on the “you can’t have it diet.” It’s stories like his that remind us why we do what we do. We create healthy recipes for the neutropenic diet so you can get much-needed nutrients while staying safe. The best part is they can also be delicious and satisfying!

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By Jeff Tomczek

Food is perhaps the most universal of topics. We all must eat. However, the way in which we nourish our bodies differs drastically on an individual scale primarily driven by education & environment. In my own case, I was lucky to grow up with all the food I could possibly eat in my family’s ranch style Wisconsin abode. Balanced home-cooked meals prepared by talented parents who loved to be in the kitchen were the norm. A full walk-in pantry lined with snacks was open 24/7. The fridge was stocked with sodas and juices. It was so abundant that friends liked to call our house the ‘grocery store’ as they had never seen so many options in one home.

In college I began to find a new appreciation for preparing food. I had caught the bug passed down to me and was grilling & cooking with regularity in my Minneapolis apartments. There was little thought to the health aspects of what I was eating. I just wanted it to be delicious and affordable: burgers, tacos, pasta, omelets, etc. I certainly had no trouble feeding myself and was so active playing racquetball, basketball, soccer and working out that my metabolism could keep up with each additional plate of nachos or pitcher of craft beer. It was good to be young.

Then, at 25, I moved to New York City (one of the food capitals of the world) and discovered the glory of takeout, delivery and foodie dining culture. Thai on Tuesday, Mexican Wed, Sushi Friday, Greek on Sunday…the only food challenge I had trouble passing was deciding where to eat. I also started to care more about what I was eating from a nutrition standpoint. New Yorkers have a tendency to eat well, but with their health in mind. It was an exciting new idea to me that meals could be delicious and healthy.

All of that changed when my life of carefree consumption came to a head at 27. It was June 2011 and one might say I had the fork stuck directly in the road when I was met with another universal topic: disease. After months of feeling ‘off’, I walked into the ER and days later was diagnosed with ALL leukemia. Besides feeling my stomach drop, I was also told I was going have to change what went in it. The protocol for treating ALL involves a great deal of chemotherapy and eventually intense full-body radiation and a stem-cell transplant. These events devastate the immune system, rendering it relatively useless. You can equate it to having a Teacup Yorkie guard your house. They might stop a rolling dust mite, but the rats are getting through. Thus, I was forced to relinquish control of my diet to the professionals.

With defenses down, the body is susceptible to far too many food-borne illnesses and the docs are quick to prescribe a strict neutropenic diet that has one main rule: nothing fresh. If it isn’t pasteurized, purified, filtered, processed or cooked it likely isn’t going to be on the menu. There is simply too much bacteria in fresh food. Instead, items that you otherwise wouldn’t think to eat become the norm: overcooked meat and rice, junk snacks like chips or wrapped cookies, etc. Salads were out and burnt pizza was in. Raw anything was the absolute last possible option. No alcohol. No lunch meat for sandwiches. The neutropenic diet might as well be renamed the You Can’t Have It.

So, how does someone who loves food operate on such a limited spectrum of items and stay nourished at a critical time when their body is breaking down and needs fuel to fight? It isn’t easy. It takes many strategic calories (cans of Ensure are the fast, drinkable method that docs recommend), a great deal of microwaving and an acceptance that whatever you’re putting into your body probably isn’t going to be that good to the taste, but is critical to recovery. You also must accept that one bad grape can ruin a week.

While in-patient you are strongly held to the neutropenic diet by the nursing staff who feed you from the same limited, flavorless menu day in and day out. It gets old after a week. After a month you begin to have fantasies about all the things you love to eat. The cravings for foods you once took for granted become vivid dreams that you can almost taste. Mine involved burritos, fro-yo, sashimi and melon salads. Of course, when your dinner tray is delivered with another peanut butter and jelly sandwich on it, it makes you want to scream.

As an outpatient, you are on your own and there are moments where you might stray and take risks. Usually these aren’t worth it. I found that out the hard way with an infection that landed me in the hospital for 5 days and again, even months after my transplant when I contracted e-coli. Needless to say, it isn’t recommended that you cheat on the neutropenic diet. It doesn’t forgive easily.

In the end, I lost nearly 30 pounds while neutropenic. Much of this can be attributed to the transplant, but at least a small percentage of fault has to be assigned to the diet itself. There are simply no tastier alternatives to the fresh foods we take for granted in our daily lives. Eventually, I grew tired of eating all-together because of it.

I compare the day that your oncologist finally declares your counts healthy enough to return to eating normally to the last day of school as a kid, when a world of opportunity reveals itself to you. Every bite tastes better than the last. Every meal brings back nostalgia for your taste buds. It’s also fortunate that at this stage most patients are in dire need of regaining lost weight. It makes for several months of free-for-all eating without the guilt.

Then, one day, for those of us so fortunate enough to be survivors, you return to your old self and eating becomes routine again. You go back to salads and fresh fruit. You eat lean meat and sushi. You stop at Pinkberry & Chipotle without worry. Even so, I still find myself pausing before meals and appreciating what is on my plate to a much higher degree than ever before.

My stem-cell transplant occurred the day prior to Thanksgiving. That forever renamed the date as ‘Day Zero’… a medical slang term for the day of the procedure. The next day is considered ‘Day One’ or the day of your rebirth. Annually, this now makes each Thanksgiving my new birthday (another tradition in cancer hospitals). Needless to say, when the traditional holiday feast is prepared and the table set before me, I ready my cutlery and take no bite for granted. Yes, I have my cake and eat it too.

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