My husband eats to live. I live to eat. I love food. It’s a statement of gratitude I must say at least once per every meal. Sometimes I wonder how he and I have been together for 17 years when our appreciation for food is so distinct. But, I love him despite his shortcomings… of food!!
But food has been fuel for the last 8 weeks. ONLY fuel. And beyond sad, it has actually been scary and traumatizing not being able to properly fuel my body.
Most people with this cancer opt for a feeding tube and for good reason. Radiation to the throat is excruciatingly painful. Burns, sores, ulcers prohibit swallowing and speech, too.
Chemo changes taste and turns flavors to the likes of chewing metal. Nausea and vomiting doesn’t allow proper nutrition to fuel your body and the dehydration destroys your organs.
So a feeding tube allows for easier fueling of the body and hydration without numerous trips to the hospital.
But, I love food. And there is no greater motivation for eating (even in painful situations) than hunger.
I also had other trepidations for avoiding the tube. I was scared of the procedure, of the unknown and of potential side effects such as infection and pain at the site. I was nervous to acquire atrophy to my throat and tongue muscle, leading to therapies and prolonged recovery..
So I did not enter blindly. I had several appointments with the Med Surg nurses, a dietician, both my medical, radiation and naturopathic oncologists. I weighed in their opinions, created a plan and hoped I could adhere by it, to fuel my body through trauma, into recovery and then healing. But, I also didn't realize the severity of what was to come or how incredibly painful things would be in combination with both chemo and radiation happening concurrently
It was HARD. Within the first week of chemo and radiation, my mouth changed such as:
There were days I could hardly swallow and would have to numb my throat with lidocaine to swallow an 8 oz 600 calorie shake three times a day. And then I would vomit up all that hard work. And that started in week two, with so many weeks to go. Then the radiation burns appeared and when you attend treatment daily, you just continue to burn and re-burn the same space over and over again. We are now at week 8 and I am still waiting for this ulcer to heal. It is my last residual pain. 6 weeks of modified foods, shakes, soups, soft foods and no chewing.
Eating and hydration are a full-time job when you feel like doing neither, pain and nausea prohibiting your body to do what your mind knows it must. Counting calories ensure I don’t lose TOO MUCH weight because lost weight was a guarantee and counting ounces of fluids keeps me at a minimum in the infusion clinic for hydration IVs.
But here we are, 2 weeks post-treatment. My daily foods are minimal. My foods must be nutrient dense and high in calories, fat, and protein. As of now, I am eating mostly:
I would like to eat so many other foods but until my mouth is healed, I am limited in my choices. I try many new things every day but can never be sure if it will pass “the test”.
It takes tremendous thought and unfortunately a bit of wasted food. But I just keep trying. I will try most anything because I love food——and because I have weight to gain and fuel gives me energy. I am SO ready to join life again!
Food is still my favorite and thank goodness it is. I don’t know that I could have persevered if I couldn’t imagine what food should taste like when it had zero flavor in my mouth. And still, I only taste about 50% of what I am eating. That should return, they hope. And I hope it returns before I am teaching 100’s of middle schoolers how to cook!
So for now, I look at it as a challenge. What will my new favorite foods be? What have I not tried that might be good now? I love food and am determined to continue loving food, so CHALLENGE ACCEPTED!
I am mama of three beautiful babes; two sons whom I have the privilege of raising and my daughter who lived for 33 sacred days.