Will I ever eat again? No doctor would make an absolute prediction. “Let’s wait and see what happens in surgery?” “Let’s wait and see how you respond to treatment?” “Let’s wait and see how speech therapy goes.” “Let’s wait and see when you have your teeth replaced.” Wait and see became the adult version of peek-a-boo minus the fun and instant gratification. With so much uncertainty around my surgery which required cutting out half of my tongue and rebuilding with parts from arm there was one thing I was certain about - my relationship with food would never be the same.
I LOOOOVE FOOD!!!! I LOOOOVE EATING. Whether it’s hanging out with friends, date night with my husband, or dinner around the table with my family, a meal, a snack, or a cup of coffee are usually involved. America’s best duos are movies and popcorn, baseball and hotdogs, and Fourth of July and apple pie. Holidays are not holidays, and celebrations are not celebrations without it. My best travel memories involve food. For heaven’s sake I’m Jewish, not being able to eat seems almost antireligious.
Call me old school but I prefer eating and drinking the old-fashioned way…through my mouth. If the eyes are the window to my soul, then the mouth is the doorway to my body, and oral cancer just blew the hinges right off that door. My diagnosis gave me new choices to consider…a feeding tube in my nose, a PEGG tube in stomach, or a PICC line in my arm. None sounded remotely appetizing.
Prior to surgery, my doctor asked if I preferred a PEG tube (percutaneous endoscopic gastrostomy) which is a feeding tube inserted directly into the stomach or a feeding tube in my nose because for at least the first 4-6 days I wouldn’t be able to eat or drink because of swelling. Hmmm….PEG or feeding tube? Is that like chicken or fish? Without hesitation I chose the less evasive of the two and went with nasal feeding tube. Minor as it was, a PEG tube was an additional surgery and to be perfectly frank, having half of my tongue cut out was enough for one day.
For five days, the nurses pumped a blend of who knows what into my tube. I’m grateful I couldn’t taste it, but as it traveled from my nose, down my throat and into my stomach, it cooled everything in its path. The thrill of having my tube removed on day six was a short-lived victory immediately replaced by the terror of having to eat and drink on my own, a requirement for discharge. Viscosity and nectar thick entered my vocabulary as tricks to get the food down. Where’s Julie Andrew’s spoonful of sugar when you need it? My first non-nasal food was a cherry popsicle. Most of it dribbled down my face and onto my lap, but a few blissful drops trickled down my throat. I graduated to soft mushy foods, then found the courage to try tuna. Big mistake! Hospital tuna is NEVER a good idea, even on a great day. Don’t ask me how I got it all down, but I must have pulled the wool over everyone’s eyes because they let me go home on day seven.
Once home, I started on lemon yogurt. I can’t stand yogurt. Never have. I recall once trying lemon yogurt as a kid and not being totally grossed out by it, so it was worth a shot. I’d sit at the kitchen table spooning one awful bite of lemon mush after another into my mouth. After an hour, I’d finish one carton, do a few laps around the house, get some fresh air, sit down, pop the top off another yogurt, and do it again and again and again until I mastered yogurt and got over the fear of eating. To this day, I’m still not a yogurt fan but I learned two things: One – I’m pretty sure there’s no real lemon in lemon yogurt. Two - I could retrain my taste buds and tolerate just about anything if I had to.
Aside from adjusting to the new software in my mouth, I had one month to prepare for treatment. I met with my oncologist and radiologist to find out what comes next. For 3 months I would have chemotherapy and radiation simultaneously. My oncologist ordered a percutaneous indwelling central catheter also known as a PICC line to be inserted into my arm. This super-highway delivered medicine, hydration, or whatever else my body might faster, easier, and more efficiently.
My radiologist warned me the first 2 weeks of treatment aren’t bad, but then it hits you like a ton of bricks. The pain will be immense but manageable. I might need a PEG tube which is common with head and neck patients. Eventually, eating solid food will be out of the question because of the pain and IF I can swallow, I will be on a liquid diet. Expect to lose weight and possibly my hair, voice, and sense of taste. As a bonus, the exhaustion would be debilitating.
This was the only package presented to me. It sounded quite awful and scary. I knew what I had to do. First, I met with a nutritionist whose best advice was “Make every calorie count.” Then I gave myself one goal and one goal only, I knew I could handle. That’s it. And this goal…I could not end up on a feeding tube. You know the saying “Use it or lose it?” I had to keep my throat muscle working. There was too much at stake. I love eating. A world without pizza or sushi or ice cream was not an option for me. But you know what, I found a diet which worked and helped me stick to my goal. It was not easy because of the pain and the side effects of treatment, but I did it.
I researched every drink and recipe out there. Two weeks into treatment, my pain went from zero to unbearable. Operation Smoothie kicked in full gear:
- Large Baskin Robbins coffee malt – 1100 calories
- Large Jamba Juice Chocolate Moo’d Smoothie minus the chocolate and added whey powder – 700 calories
- Homemade Smoothie with Vanilla Ensure, Peanut butter or almond butter, a banana and whey powder – 700 calories
For over 100 days and nights, I drank the same smoothies for breakfast, lunch, and dinner. The meal of champions. Nothing passed my lips without my permission.
All the doctor’s predictions came true and then some. Horrible pain and overwhelming side effects left me battered and bruised but not broken. Imagine the final scene of the film Back to the Future when the De Lorean blasts into another realm leaving a blazing trail in its track. That’s what over 3 months of on-going combined treatment felt like. Radiation beams fried everything in its path – my mouth, my vocal cards, my neck, my face - leaving me with second degree burns, mouth sores, and ropey saliva so thick I would gag on it. Thank G-d for pain medication. Under my doctor’s care these miracles drugs saved me.
Aside from treatment Monday through Friday, I spent the remainder of my day sleeping and watching TV. I obsessed over the Food Network. Imagine not being able to eat yet the only thing which mattered was watching cooking shows all day long. Perhaps I’m a glutton for punishment, but food fantasies filled my days and nights. Roasted potatoes, lemon chicken, fresh bread, chocolate cake. I imagined all the meals I would whip up for my family when I was well. In between sleeping and cooking programs, I devoured baking recipes on the internet. Over the weekends, with whatever energy I could gather, my young daughters and I would bake treats to bring into my doctor’s offices on Mondays. I’m not even sure the food was edible, but it gave me a sense of purpose and made me feel like a normal mom spending time with her kids.
Prior to cancer, I prepared dinner most nights, which my family and I enjoyed around the table. Juggling cancer life left little room or energy for this. Thankfully, my community stepped in and a friend organized a Meal Train. Every day, someone new dropped off a delicious surprise, nourishing our hearts and our bellies. I’m grateful for the food, but I’m more grateful for the family time it created. Even though I couldn’t eat or talk, being together with the family, hearing about their days and being present gave our family a little bit of normal.
After a third diagnosis, I continued discovering my power in big and small ways. I lost a lot of weight but managed to keep myself strong enough to function. I got through the pain, then weaned off the drugs. My hair, voice and sense of taste made a comeback. And finally, I never had to rely on a feeding tube. For the second year, I drank the same smoothies every day throughout treatment. Eating my first real food, a half-cooked carrot, which I steamed the life out of, was like winning the lottery. It was the best carrot I have ever eaten.
Almost eight years out since my final diagnosis, my relationship with food has absolutely changed. I miss licking an ice cream cone, crunching on most raw fruits and veggies, or enjoying my favorite salad. Steak is out of the question. Most wines, alcoholic drinks and sparkling drinks burn my tongue. I’ve never loved spicy foods but now they’re intolerable. Eating takes effort and when my mouth poops out, my go-to smoothie always does the trick (I still love the Jamba Juice Chocolate Moo’d Smoothie – go figure). However, I’ve got this. If I want an apple, I peel the skin and cut into paper thin slices. If I want a drink, I enjoy water-down cocktails or sweeter wines. When it comes to roasting vegetables, I could teach the chefs on the Food Network a trick or two. I still love my sushi, pizza, and ice cream. Some foods I’ve eliminated all-together. It is what it is.
Food was and is a tremendous source of power for me; not only for nourishment and health but as a vital centerpiece in holidays, celebration, travel, and family and friend get togethers. Food played a crucial role in motivating me through treatment and giving me purpose. I’ve even cooked up a few of the fantasy foods I imagined as I lied in bed all those months. While my relationship with food is different, every day I have tremendous gratitude I am able to eat and drink, and food continues to be a powerful source for healing physically and emotionally.
I DYP – Discovering My Power, My Way from food. Could this work for you?
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