You are what you eat! When Paul was diagnosed with cancer, the first thing we discovered was that we did not know what constituted proper nutrition. A lot has happened to compromise our food sources - chemicals, hormones, genetic alteration, loss of nutrition from processing. The body was designed to use the nutrients in natural food. When you are critically ill, it is a good idea to use extra nutritional supplements. We have enjoyed using these products, as well as Spirutein Sport and Spectrum. *

* These statements have not been evaluated by the Food and Drug Adminstration. These products are not intended to diagnose, treat or cure any condition.

Good Nutrition Eating with a Peg Tube

One of the hard realities of having throat or mouth cancer is that treatment can leave the individual unable to eat by mouth. Being dependent on a liquid diet for nourishment presents many challenges in itself. For one, few of us ever give a thought to what a social ritual it is to eat out. Much of our social involvement involves eating together. These are social rituals when we bond, forge ties to one another, share stories, develop memories. All this suddenly dissappears when one can no longer eat like everyone else.

This cannot help but throw the unfortunate person who has to suddenly deal with the reality of living that way into quite a few dilemmas. Their friends and relatives may suddenly shrink away, fearing how the unfortunate patient might feel about their inability to eat normally. More accurately, their friends do not know how to deal with thinking how they would react if it happened to them. This line of thought may lead them to feel uncomfortable eating in front of someone who cannot eat any more. Bottom line is, the patient becomes an instant social outcast or is made to feel like one. To add to this instant isolation, the doctor and hospital nutritionist tell the patient to live on a tasteless canned nutrient and may even encourage them to get a pump that automatically drips the liquid into their system while they languish in bed.

Ultimately, all of this sends the entire psyche a loud message "You are really, really sick. You are not normal. You cannot join the rest of the world. You are removed from the flow of life, family and friends." This is not the message to "get" if you really want to gain back your health and get on with life.

Paul and I chose a different approach. We live in a modern world. There are ways to liquify normal food. We invested in a good juicer and books on nutrition, juicing and the benefits of raw food diets. We invested in a good sturdy blender and experimented with various ways to strain the meals Paul would prepare so we could both eat the same things.

One trick which he found especially effective was to prepare the meal as usual and dish up both our plates. He was a gourmet cook. For him, a meal was an event, not just some stuff to fill the empty belly. He enjoyed good presentation. So, he continued his gourmet meal preparation, made it as nice as he ever had, savored the appearance, the look and the aroma. Then his plate went into the blender, extra liquid was added (fresh juiced veggies and/or tasty meat bullion (from organic beef, chicken or fish) and was pureed to the consistency of tomato soup and strained into an attractive deep container like a deep soup bowl or one of those oversized coffee cups designed for soup. We dined together, had a little wine or beer, talked. Basically did everything we could think of to keep the day-to-day normal and supportive to good health by sending the mental message "Life is good; we have a lot to be grateful for; I am stronger and better each day; my spouse/significant other, friends and family love and support me; all is well."

Paul was never shy. He was a robust, rather bombastic party-boy and superb communicator. He loved a good time and he loved to get out among people. So, as soon as we could, we were dining out again. His approach was, "Sure, people are going to be curious. They do not see this very often. So I will explain this to them. Those who feel uncomfortable will feel much better when they know I'm ok with my situation." So, he would explain his situation to anyone who looked like they needed an explanation. Children were especially responsive to this. Waiters and waitresses were happy to go talk to the chef and let them know of Paul's special needs for their lovely meal. Since we made it a point not to tax them
with special requests during a peak rush hour (and left good tips), we rarely encountered a problem. There were times when it was better to call in advance and make sure the cook knew we had special needs.

We also recognized Paul's need for a good multi-vitamin mineral (etc.) supplement. We could not find anything labeled "meal replacement" that actually met our standards. Our standards were that it be all natural made with on-genetically modified ingredients. We considered the protein content and where the protein came from (soy, rice, whey). It was important that the supplement be very easily absorbed and digested, which meant that we wanted something with digestive
enzymes, Probiotic bacteria, amino acids and trace minerals (at least). We also knew what we did not want it to have. We did not want it to have anything that worked against the metabolism such as corn syrup or other processed sugar, artificial chemical sweetener like aspartame, hydrogenated oil (including partially hydrogenated oil), or palm kernel oil. This lead us into looking at what top athletes use. We were also looking for a product that could add weight and muscle in a healthy way. Looking from this perspective, there are
many great products available that do not claim to be meal replacements.

Since Paul was not going to completely live on it anyway, all we wanted was a very superior liquid supplement. It was good to have something we could mix in a thermos and bring with us if we wanted to take a spontaneous day trip. On the occasions we when we decided to stay the night in a hotel we looked for places with kitchenettes like Extended Stay America, so we could fix his food in the room, if we wanted. With a little planning, we could be as active as his overall health allowed. When a person has cancer, they do have their "down" days, while they are recovering from the rigors of treatment even months after it is over. You tend to make the best of the good days and ride out the not so good ones.


Equipment:

Good quality juicer

Good quality blender

Steel strainer - we found the hand-crank flour sifter with the ritating wire to be more than adequate

Pill crusher - a mortar & pestal work good, or you can dedicate a small coffe grinder.



Ask your doctor for the largest size feeding bolus you can get. Paul used 24 Fr low profile feeding bolus Mi-key by Kimberly Clark in his belly and a 24" feeding extension also size 24 Fr. That size is large enough for real food that is pureed to the consistency of tomato soup. You'll go through them, so keep several spares on hand at all times. I made it a point to keep extra bolus kits and extensions. When Paul first got his feeding device implanted, we were told to report immediately to the ER if it ever came out or anything happened to it. Here are the facts:

1. Emergency Rooms do not stock feeding boluses and very few doctors know how to insert the. I asked Paul's gastroenterologist to show me how to replace them so we would not have to go to the ER.

2. They tend to wear out every 6 months

3. When you eat real food, the feeding extendion gets stiff after while and needs to be replaced

If you are offered a Kangaroo pump, turn it down. You will not be able to eat real food with it. Paul used a 60cc feeding syringe. Sometimes we had to take the plunger out and
lubricate it with Pam to make the pumping action smooth.

Benefits of this approach:


Eating this way allowed Paul to gain back a healthy amount of weight and physical stamina. His capacity per meal remained at around 16 oz. of very high quality food. His hair stopped turning grey and he stopped needing to use deodorant. Long after the fact, a hospice nurse informed us that tube feeding always failed because the stomach shank into almost nothing. This was not the case with Paul. Wit this diet (instead of the liquid typically supplied to peg tube patients, Paul was able to get adequate fiber in his diet not to have many problems with constipation. He also felt more normal emotionally because he
was able to be socially interactive with family and friends.