Support Services: Nutrition and Speech Therapy

I lost five pounds from the time I was being tested for cancer until the beginning of treatment. Since I was twenty or thirty pounds overweight, that seemed like a silver lining to me. If I had to go through a nasty time, at least I could come out of therapy down to the weight I desired.

That wasn’t the way my oncologists saw it. They insisted I maintain weight as well as I could to stay healthy and give my body the tools it needed to fight my disease. Goodbye silver lining.

So, at my second chemotherapy infusion I saw a dietician.

“During cancer therapy is the worst time to lose weight – the body needs nutrition to fight the disease as well as to deal with therapy. During therapy you should expect to burn calories up to three times faster than normal.”

I hadn’t thought of that. In essence my body was using calories for its normal daily functions (one) as well as to fight cancer (two) and to replace what treatment was using (three)—triple the amount of energy I would require when healthy.

I was urged to maintain a high calorie count. The reasons they gave were convincing. If I lost weight too quickly I would lose muscle mass. Important things are done by muscles—my heart, for instance. Too rapid weight loss would also decrease my body’s ability to fight cancer by reducing the effectiveness of my immune system—the way chemotherapy cures cancer. There was even a danger that my radiation mask would no longer fit snugly and immobilize me during radiation therapy!

There was no way this was going to equate to my normal eating habits. A lifelong yoyo dieter, I had gained and lost the same twenty pounds or so every eight or ten years throughout my life. I was left with a metabolism that was fooled into thinking I could exist on 800 calories without dropping a pound. I routinely avoided fats and carbs for years, had managed a ten-pound loss over a year’s time, and was maintaining my weight on that diet.

Now I was being told:
• Eat as many calories as possible.
• Add butter, sugar, cream to everything. The more the better.
• High calorie, high protein.
• Try for 1500-1800 calories a day.
• Drink milkshakes, smoothies, eat pudding and ice cream.

That may sound like a dream come true, but the problem was I had no appetite, soon everything either had no taste or tasted lousy, and my guilty mind believed I was eating BAD foods.

The biggest problem was, I just wasn’t hungry. While I was undergoing testing for cancer, I had no appetite due to anxiety. I was tolerating all foods, but I had to force myself to eat. Once therapy started, I lost another five pounds in the first week due to throat pain from my biopsy and nausea and constipation after my first chemotherapy infusion. This brought me to ten pounds below my pre-cancer weight. My medical team was not happy, but I promised them I would do better. I must repeat that a strong personal fear was of having to have a feeding tube.

Dieticians saw me every Monday in radiation therapy. A speech therapist saw me every Friday. At first I thought that was overkill, but those thoughts were shortly nipped in the bud. While oncologists were managing treatment, these ladies, along with my nurses, were teaching me how to manage everyday life and how to survive not only my cancer but my therapy and recovery.

The dreaded feeding tube hung over my head. To avoid that I had to eat and not lose the ability to swallow. So I welcomed help. Before long I brought a list of questions to each visit.

I was being treated at a teaching hospital, so sometimes I saw student dieticians. They were young but knowledgeable and enthusiastic, and the registered dietician summarized each session. It was clear that they all wanted me to succeed and took a personal interest in my care. They reviewed what I was eating, asked about difficulties, checked my weight, and offered suggestions. They set a calorie level for me, 1500 to 1800 calories per day. Since I generally ate less than 1000, I didn’t agree, but said I would try.

I was advised to eat smaller meals, but more of them—six a day—and given handouts with suggestions for high-calorie foods to pick from. Listed were things I could add to my food to provide more calories and suggested menus. I was also encouraged to drink Ensure or similar products to keep the calorie level up. On my own I started a journal to record what I ate each day, my calorie count, how I felt, problems and successes, and recorded my weight weekly.

By the second week of radiation therapy my anxiety and constipation were over, but side effects were developing that made it hard to eat. I had mild nausea, painful and difficult swallowing, loss of taste, sores and later a persistent unpleasant coating in my mouth. My appetite wasn’t only poor, it was nonexistent. Every time I sat down to eat it was an effort. Nothing was appealing, and after a few swallows, eating was a struggle. I had to give up the idea of eating the foods I was accustomed to and eat for survival instead of enjoyment.

In addition, I was spending much of the day Monday through Friday at the hospital, so my food had to be portable. I could have just drunk Ensure and called it done, but I was afraid if I stopped chewing and swallowing I would end up with that feeding tube, and if I didn’t eat solid food my constipation would recur.

“Pain isn’t so much a problem for me. Nausea and taste are a bigger deal. Everything tastes awful, salty or metallic, and I have no appetite. A few bites and I feel full and don’t want to eat anymore. If I push it, I get nauseous.”

“You need to get more calories into smaller portions of food. That’s why Ensure is good, and high-calorie additions.”

They checked my weight, compared it to the computer records and reviewed my journal. “You are actually doing quite well. Even on a lower calorie count than we recommended, you’ve gained back a couple of the pounds you lost.” Big smiles on the faces of both students.

I discovered that packaged biscuits and rolls from the dairy case, the ones you take home and bake, are small and very high in calories. I made a sandwich with peanut butter, jelly, and cheese for a calorie count of 380 and it was portable. I felt proud of this discovery for a week or two, when I couldn’t handle bread anymore. It turned into a thick tasteless blob in my mouth that I couldn’t swallow without wanting to vomit.

After that I turned to hardboiled eggs, cottage cheese, and pudding, traveling with little containers so I could eat in the car. Soon even the eggs and cottage cheese were difficult. Almost all food tasted really bad.

“What are eating now that you tolerate?” I was asked.

“I can always eat oatmeal and drink Ensure. Other foods are iffy,” I told them. I added cinnamon sugar, butter, and cream to oatmeal to bulk up calories, and a cup of coffee with cream (my only coffee of the day, since caffeine is discouraged). Thus prepared, breakfast was 250 calories. Ensure is 350. So with these two things alone I was halfway to my calorie count.

“Then eat oatmeal and Ensure,” I was told. “We may have same samples. What flavor do you like?”

“It doesn’t make any difference. Everything tastes the same.”

On another visit I felt discouraged. “I do okay earlier in the day, but by afternoon or evening it gets really hard.”

“That’s because side effects build during the day. Take advantage and load yourself early in the day so you can eat less in the evening.”

A few of their suggestions didn’t work for me. Some people like cold foods like ice cream and milkshakes. I found warm foods easier to swallow, even warm water. Ice cream, no matter what flavor, tasted like salty metal to me. I also couldn’t tolerate sugarless candy or gum. These burned and then left an unpleasant, nauseating taste in my mouth, sometimes for hours afterward. To keep my mouth “busy” I preferred warm (never hot!) water or tea.

My reward? After two months of cancer therapy I lost only ten pounds!

Speech therapy:

Speech therapy is routine for treatment of tongue cancer, but I would have asked for it, due to my fear of a feeding tube. Even if a tube is placed, one needs to be concerned about swallowing, breathing, speaking, and long term lifestyle. When I envisioned the area where I knew my primary lesion was, I would picture my throat swelling, closing off my airway, me choking, food stuck, unable to breathe. None of that happened, but I needed reassurance over and over.

At my first visit with the speech therapist, she asked questions and let me explain my fears. She observed me and felt my neck as I swallowed foods of various thicknesses, including water, applesauce, and graham cracker.

She then assigned a series of exercises. Some were familiar, as I had watched my mother do them. The series took less than fifteen minutes, and I was to do them three times a day. The goal was to strengthen and train the muscles involved in the swallowing process.

One of the exercises was to stick my tongue out a little, hold it with my lips or teeth, and swallow. It was awkward at first. In fact, it’s still awkward three months later. Try it and you’ll see what I mean. Another was to sing the vowel “E,” starting low, going very high (falsetto), sustaining at the high pitch, then dropping to very low. That was easier to do, but embarrassing if doing it in public, and I spent much of my day at the hospital.

I’m not proud of my compliance with these exercises. Despite my motivation. I sometimes forgot them, sometimes was too tired, and sometimes it just didn’t work out. I tried to do them in the car, or whenever I remembered during the day, or to do the less “obvious” ones even in public. I got some of them done every day, and my therapist was happy. She could see I was doing well and was more compliant than the average patient.

I also brought questions to my appointments with her. Being careful not to make promises (medicine is not an exact science), she nonetheless set my mind at rest about my image of my closing throat.

“Your ENT is the best person to discuss that for your particular case. However, I can tell you that is not something we anticipate.”

“Then why do many people with this diagnosis get feeding tubes?”

“Some aren’t as cooperative as you. Some can’t eat due to pain, not due to ability to swallow. Your swallowing muscles will always work. However, side effects limit how effective the process is. You can minimize that by doing the exercises, whether you are having problems or not.”

She told me to watch for coughing, for sticking of food that was not cleared by multiple swallows, and for congestion after meals.

Despite the exercises, side effects did change the way I swallowed food, partly because of pain when swallowing and partly because radiation to the area seemed to make it harder to do. Swallowing became of necessity a conscious thing. If I swallowed too quickly or if food hit my soft palate or the back of my throat unexpectedly, food stuck or I had a coughing spell. I didn’t gag, but sometimes I could feel the food staying at the top of my esophagus and would have to wait a short time for it to move down. Mucositis caused not only thick mucus but also sore spots on my tongue, cheeks, and gums, which limited the way I moved food around in my mouth.

Swallowing a number of times without break was hard to do, both because I could feel the muscles tensing and for fear of choking.

“I put food in my mouth and it comes together in a ball, but then I can’t swallow it until I add water to thin it out. Sometimes I cough because the water drizzles down while the rest sticks.”

“Yes, swallowing different consistencies can be hard. Try this: when you want to mix the foods in your mouth, drop your chin and let the food come forward to mix. There’s more room for it there.”

That worked like a charm! I also found that it was helpful to swish some water in an empty mouth every now and then and swallow that, so that little particles hiding below my tongue or beside my cheeks didn’t surprise me.

Through most of my therapy and recovery, I had a sore throat for at least a part of each day. I usually woke finding that swallowing was painful, but after a few consecutive swallows eating breakfast the pain would go away. It got more severe again in the late afternoon and evening, but again got better whenever I was eating. It was sore at night, but since I swallow so infrequently during the night it didn’t interfere with my sleep.

“Some of the pills they’re having me take I swear were meant for horses. What do I do if I can’t get them down?” I worried. It never actually happened, but on occasion pills did seem to stick for a time at the back of my throat. I was always able to work them down with water.

“You can crush them, or twist the capsules apart. Another thing you can do is put the pill in a spoonful of pudding. It seems to make pills slide down easier.” I didn’t have to try that, but I hope I remember it!

My reward? The result was that I never had to have the dreaded feeding tube, I was able to eat (and breathe!) throughout therapy and recovery, despite the fact that everything tasted like *&^%$#@. I’m firmly convinced that the exercises and discussions with my speech therapist made life easier for me. A few weeks after therapy I had a video swallow evaluation and passed with flying colors. Although it sometimes takes two swallows to do what one should do, the food remains “safe,” there are no obstructions, and I’m not aspirating (food passing into the airway instead of the esophagus).

My dieticians and speech therapist encouraged me, praised my efforts, understood what I was undergoing, and were forever patient. If on a rare occasion my question left them baffled, they checked further and got an answer. I didn’t need to go to group support meetings for cancer patients because they gave me all the support I needed. Besides, I knew what they were telling me was good medicine, coming from people I trusted, who knew my particular situation. Perhaps most important of all, I knew they wanted me to do well and cared about me.