HeadLines

 

Kirklin Clinic Head & Neck Cancer Support,  Birmingham, AL

Distributed by American Cancer Society
Pat Sanders, Editor
Second Quarter, 2009


The Role of the Dietitian

Dena McDowell, MS, RD, CD
Clinical Dietitian
Froedtert Hospital Clinical Cancer Center
Milwaukee, WI


Who are we? Registered Dietitians (RD’s) are nutrition professionals who assess the dietary needs of individuals. RD’s work in hospitals, outpatient clinics, food service, health clubs, government agencies and as wellness educators. To become a RD one has to complete a four year degree from an accredited college or University. After completing coursework, these nutrition experts gain practical experience through an internship. Passing a national board examination is the final step to becoming a RD. This pathway is distinctly different than people who refer to themselves as “nutritionists”. Anyone can be called a “nutritionist”; however the practical experience coupled with the education in nutrition make RD’s more qualified to practice and educate the general public.

What do we do? RD’s assess dietary patterns and create meal plans tailored to the needs of the client/patient. In a clinical setting, the current diagnosis, past medical history, and food allergies or intolerances are all taken into consideration with meal planning and education. RD’s will modify meal plans to best meet the needs of the patient or client. In follow-up the RD will assess weight changes and laboratory data and make adjustments to the meal plans and education as needed.

Feeding Tubes

Nutrition support is an important component to your overall care. Using a feeding tube may be necessary if you are unable to eat or drink enough to maintain weight or in the event that eating is not safe due to a diagnosis of swallowing problems caused by surgery or treatment. In some cases, using a feeding tube is a temporary measure to ensure proper nutrition support in times when you are unable to eat or drink calories to maintain weight and hydration. For some, however, being fed through a tube becomes the only source of nutrition and hydration and is a permanent solution to feeding problems.

There are many different types of feeding tubes. Nasogastric tubes are commonly placed through the nose if the person only needs nutrition support temporarily. Gastric or Jejunal feeding tubes are placed when nutrition support is expected to be needed for a few weeks or longer periods. These tubes are larger in size than the nasogastric tubes and are placed either in the stomach or in the beginning of the small intestine.

Using liquid formulas, that contain carbohydrates, protein, fat, vitamins and minerals, provides nutrition support. There are many different formulas available. Your healthcare team will choose the one best suited for your needs. Depending on the type of feeding tube, nutrition support is either provided continuously (over 12 or 24 hours) or intermittently matching meal and snack times.

Hydration may be also provided through a feeding tube. Your healthcare team will determine how much water you need each day in addition to your tube feeding formula. Water is given through a syringe either before or after your feeding. It is important to flush the tube with water after feedings and medications so the tube does not get clogged.

Transition from a Feeding Tube to Eating Again

Making the transition from using the feeding tube for full nutrition support to eating again may seem like a daunting task. Once able to eat, start with soft foods such as puddings, cream soups, ice cream shakes, gelatin, hot cereal, yogurt and cottage cheese. Once these foods are tolerated adding foods with consistency is the next step. Eating easy to chew and swallow meats, eggs, casseroles and pastas are good choices. The process of being able to tolerate these foods can take anywhere from a few weeks to a few months. Be patient and keep the tube feeding running until you are able to tolerate food well. A good rule of thumb is to be able to eat at least 500 calories worth of food before eliminating any cans of tube feeding. Once you can tolerate eating that amount of food you can gradually eliminate additional cans of the tube feeding as your oral calorie intake improves. Typically a can of tube feeding is about 300 calories. Keeping a food log and counting the calories of foods eaten is a good way to make sure you are eating enough. Once you are eating 50% of your calorie needs you may cut the tube feeding by half. Reduce the number of cans taken as your appetite increases.

Checking your weight with a scale is a good indicator of how well you are doing in the transition. The goal is to keep your weight stable as you wean off the tube feeding. If you start losing weight as a result of decreasing the amount of tube feeding, that will tell you that you either need to eat more through the diet or add back a can of the feeding. If you are underweight or have lost weight as a result of your treatment, it is wise to keep doing the tube feeding and eating until your weight goes back to baseline. Discuss your weight goals with your healthcare team. The following are general guidelines, which may be helpful:

Calorie Requirements
  • To maintain weight: 12-14 calories per pound
  • To gain weight: 15-17 calories per pound
  • Current weight: _______ x ________ = ___________(Calorie requirements.
Protein Requirements
  • Protein fights infection, strengthens the immune system, promotes healing and helps maintain the balance of body fluids.
  • Goal weight divided by 2 = amount of protein needed per day: ________grams per day

Fluid Requirements

  • Estimated calorie needs divided by 240 =cups needed per day
  • Limit caffeine and alcohol (dehydration risk)


LETTER TO WEBWHISPERS EMAIL LIST

from: Tim Hembree, Wichita, KS

I've been around WebWhispers for eight to nine months now and I have received some wonderful information during these months. I am finally compelled to write.

For background, I was diagnosed in June 2007 and received radiation immediately after but the cancer was back in November. My laryngectomy was in February 2008. I'm 50, never smoked and rarely drank. The reason I am writing now is because of two recent topics discussed in WebWhispers: the issue of depression and the comments about using the phone.

I may be one of those insensitive clods but I never went through depression. Or maybe I got brought up short on the day I received my first radiation treatment. I saw a child, who looked about 7 or 8, who was obviously receiving chemo as well as radiation. The second day at the radiation center, there was another child who looked a bit older. I decided, right then, that no matter what happened, I would not allow self pity. Maybe it was more like Jim Morrison sang, "I've been down so very damn low that it looks like up to me!"

What's this about not being able to use the telephone? A couple of the great pieces of wisdom I've gotten from WebWhispers is that we're all different and don't let anybody tell us we can't do something. My job is running my family auto repair garage. I greet customers as well as answer the phone. I talk with a TruTone and I will admit the phone intimidated me, at first, but soon I realized I could talk just fine with it. The only people who can't understand me are people who had trouble before, such as the very hard of hearing and people who don't speak native English. To get a good laugh, you should hear me talk to telemarketers.

To the new-new larys, I'd just like to ask you to remember that your glass is half full or better. You are the same person you were before. You have the love of your family and friends. You have the same human value. Did you sing before your surgery? Does anybody tell you to shut up because you sound funny?

What have we really lost? A voice? So what? How important was that voice compared with getting that cancer out of your throat? I lost my original voice along with the cancer but I gained a lot of insight. The outpouring of goodwill from my customers was staggering. I have also had a few people tell me that I was an inspiration to them concerning their own medical issues.

Laughter, what could be more precious? When I awoke in the hospital the nurse asked me how I was, I wrote to her "I am speechless." The smile and laugh I received was great. At the 4th of July get together, a friend's three year old daughter asked her mom if I was a robot! The laughter was deafening.

I'm sorry if I rambled on but if I were a good writer, I'd be Ernest Hemingway or somebody else. Just be glad I am good at running a shop.

Take care of yourselves and find a way to smile and laugh, even if you don't feel like it. It'll still be good to see your caretakers smile back. And you might be surprised, you might even feel better yourself!

Tim Hembree
Wichita, KS

 

IAL Annual Meeting/Voice Institute 2009 – San Mateo, CA

The Voice Institute will begin on June 24, 2009. Registration $80 before June 1. The Opening Ceremonies for the Annual Meeting and Vendor exhibits will be June 25, 2009. Registration $65. Details on the IAL website.

Any person wanting to attend the Annual Meeting or Voice Institute must register and can do so either via an online form or by downloading the PDF form and mailing it in. These forms are on the new IAL website at:

http://www.theial.com/ial/
San Mateo (San Francisco Airport) Marriott
1770 South Amphlett Boulevard
San Mateo, CA 94402-2902
Phone: 1-866-263-1461 Fax: (650) 653-6080
http://www.sanmateomarriott.com

Group discount rate is $109/night plus taxes (1 or 2 people). This discounted rate will apply for reservations for the nights June 22 through June 29. Be sure to mention that you are with the 2009 IAL to get this discounted rate. Group Code: ialiala

 

Living Better through Chemistry?

By Debi Austin

This article is true to the best ability of my thought processes. My state was altered, and I have outlived all those who could dispute any of my statements or actions. I don't change names because there are no innocent ones to protect!

Drunk, pothead, junkie. I am very familiar with these words/names. I grew up with them. I have been chemically addicted most of my life. This is not an apology for my choices or an excuse. I am writing this so some of you, who have never been here, can understand better a partner or loved one who has.

Just to clear up a few questions that run through everyone's minds when they hear the term chemical addiction. My parents were wonderful people; I liked them, even when I was a teenager. I was not led astray so to speak, but then, was I? When I was 13, I was 10 lbs overweight, according to some anorexic at the insurance company, so our wonderful family doctor decided I needed to take diet pills. When I could not sleep at night, he decided I needed sleeping pills. It took me, maybe, 30 days to discover a variety of ways to use my pills to suit myself. Oh, and I never did lose the 10 lbs.

Finding drugs in the sixties was easier than finding a complete education. Our teachers did the best they could with what they had to work with. However, I remember the many talks on alcohol, drugs, and sex being largely a series of "don't do this." Oh yeah, like that's gonna work. But that was the way of thinking in those days. I was given the movie "Reefer Madness" to explain everything. This is still the greatest pot commercial ever written. Within a year, I was playing with speed, downers, pot, and tobacco. I kept my grades up, so every change that took place was attributed to age and the times.

Due to a few situations beyond my control, I went to college early. The academics were not the problem, but the politics took every advantage. You do a stupid thing or two and some fool says, "Here, have a drink, it will help you forget." What alcohol does to the average person is make you sick, alter the chemical balance in all your organs, force you to take up projectile vomiting, compromise your dignity, introduce you to alcohol poisoning, make you hurt the people that love you, and make you act like a horse's pa-toot. Wow, doesn't that sound like a lot of fun? And we continue this into a lifestyle and try to justify it with such phrases as, "Oh I can handle this" or "If you have been through what I have been through...." You don't know what everyone else has in their closet.

Alcohol does not stop, dull, or otherwise alter pain; neither does pot, speed, vicodin, opium, or heroin. It does not alter the memory, in the manner you are seeking, on this adventure, and passing out is not rest or sleep. Not everyone sleeps with one foot on the floor to stop the room from spinning. But, it is easy to justify drinking. Many have a glass of wine with dinner, or maybe a Martini after work, a few beers with the guys during the game, a few drinks with the girls, or that drink or two in the clubhouse. These are all social functions on some level and perfectly acceptable and each stays within personal safe limits. They are acceptable if you do not suffer from some of the many ailments aggravated by alcohol like diabetes, alcohol poisoning, depression, ulcers, anything to do with your liver or kidneys or constant brain farts. The song lyrics, "Tequila makes her clothes fall off", is not just wishful thinking.

You do not forget painful things when drinking or stoned. You may forget your name and some standards of public appearance but you are not going to forget whatever caused you pain. It is not even going to look different; if anything it may be more painful. There are many myths about that because those, that survived this choice in their lives, worked very hard to move on. I understand that choice and that they don't need to look back!

Pot is legal in a number of states as "medical marijuana." This is to alleviate the side effects of many of the chemicals we take for other ailments. It does not cure squat! It is prescribed to the terminally ill and anyone else that can pay the $250 for the script to be renewed every year. Being stoned does not and will not translate to being cured, I don't care if you inhale or not.

Recreational drugs have never been known to cure anything! They temporarily alter your state, cost more, and you have to take more of them to reach the same effect. Over the last 45 years I have heard many people that I admired and respected on a number of levels say, "Oh, this is not a problem; I have been doing it for years." I am sure I have said it, myself, more than once. Oh yeah, I can walk on water, and I have a bridge for sale. If we could handle it, it would not be effecting the ones we love and we would not need reasons and excuses. If you think you are only hurting yourself, then live with yourself, not with someone you force to watch you be stupid. Many of our members "play" with their chemicals in secret. Been there, done that. It is a hard way for easy living.

I am a 300+ lb woman because speed, over the years, has shut down the ability for my body to control sugar in any manner or fashion. Even with today's meds, it is iffy. The alcohol in combination with the opiates have clogged the liver, deformed my pancreas, my kidneys have been compromised in such a way that without more than a gallon of water every day, I cannot move. I have stomach problems (classified as cancer because they cannot heal it or cure it) due to the drugs and alcohol pumped in. At least 8 (eight) of the pills I take everyday are to control or otherwise bypass the damage done from the chemicals of choice. Many days are really fun having to live with the consequences of the choices I made but this was the choice I made and I continued it for many years. I do not apologize or make excuses.

The reason I talk about this is because far too many innocent people blame themselves for the choices a child or partner make. Get over it; it is NOT your fault. If a loved one wants this life style, there is little that can be done to change anything until they want to make that change. You cannot love someone enough to make them change for you. All this rambling boils down to the fact that chemical addiction is a choice. Living with a chemical addict is also a choice. There is no obligation on either side. It is really hard to love us when we are so selfish and there is no other word. We want to be accepted for what we are but a drunk or a druggie has no idea who or what they really are. We are accomplished liars, we have to be to function. Understanding the situation is important on both sides.

I don't lie about my past or my choices and maybe it will help someone else bypass part of their personal spin cycle. I would love to say that I "never" sit on the pitty pot, but that is not true. I just try to avoid it because getting off it is real hard work. There are times that seeing our lives in retrospect is as difficult as growing up in the first place. When we get overloaded, we turn to whatever we think or imagine will bring us peace. For many of us that is what got us here in the first place. Many of us understand the choices we made but many others had no control over the situation and some are innocent bystanders. How you deal with an event can, in most cases, have more to do with your quality of life than most people want to admit.

Drinking never solved a problem of any magnitude; recreational drugs seldom, if ever, fixed anything. You can run, but you can't hide. If it is part of your life, you do have an obligation to understand and let the people that love you, understand. I have been speaking to families of chemical addicts for over 20 years. It is hard to tell someone that their only chance for survival is to stop caring, that no addict has the right to ask for more than they can give. If the addict does not care, why should you?

We buy into a line of thinking because we are programed to be unhappy. Watch commercials! They insult us on every level, tell us that, no matter what, we are ugly, incompetent, fat and too stupid to handle money or life without the help of their product or service. And who was the idiot that said, "You can never be too thin?" Was that some hag with her head in the toilet for hours each day? If you are not a blond, are you are not having fun? But, if you are blond, then you must be stupid. If you don't wear the ugliest clothes ever made, you are out of fashion? If you don't sound like me, you are pitiful? I am sure that everyone knows at least one person that is lovely just as they are, in the package they are in, and yet they complain that they are ugly, fat, or out of style. What a pity that they were sold that story.

I made my choices and I live my life around the results. I don't blame anyone, not even the doctor that started this adventure. I am sure, given my personality, I would have gotten it somewhere and done the same things. But I also stayed away from my family when I was out of control. I finished my school on a number of levels, had my own businesses and sold my art. I was a functioning junkie. Not many of us around. Being lead astray is one thing; staying on that path is a personal choice. We are responsible for our choices. Even taking my voice away did not alter the person I am or what I am suppose to give to the world. If I do the math right, I took for 20+ yrs; now I need to give back for 20+. I am not done yet.

Debi Austin,
Laryngectomy 1992

 

Wandering in WebWhispers.org

WEBSITE: When you come to the website, http://webwhispers.org/, it is like visiting the heart of a small town. This is the home base...main street. Through the red horizontal menu, you can proceed to the Library where you can look up, read, and educate yourself. You can look under Activities to see what plans the group might have for the yearly dinner or the WW Cruise. You can go to Services to see what is offered to our citizens in the way of scholarships, brochures to spread the word or go to Donations. Look at the Suppliers. Contact Us will show you who the volunteers are. OR, you, as a WW Member can go to the exclusive area where, under password, you will find several rosters of membership. Look for Members Area, upper right of the home page. Like many small towns with a newspaper, we have newsletters with articles of interest. See lower right.

FORUM/CHAT: This is the Community Center in our small town. It is the place to meet and chat or leave messages for others on a message board. It is on a different site but we 'link' to it. Delphi Forums, which has thousands of separate forums, most open to the public. Ours is not. It is for our WW members only and we would lose our privacy and closeness with an open door.

THE [WebW] EMAIL LIST: Many new members refer to "reading what was on the site this morning", meaning the emails that come to their own mailbox from other members. That’s the way most of us start our day.


 

Kirklin Clinic Head & Neck Support Group
No meetings until further notice. In the interim, we suggest that you join WebWhispers.org if you have an email address. You are also invited to attend an All Cancers group with a luncheon every third Tuesday in Vestavia. Call or email Pat Sanders if interested.

HeadLines Newsletter:
B’ham:  Pat Sanders,   205-980-8416; pat@choralmusic.com
                                                                                                                                                        
 


For cancer information call 800.ACS.2345 or visit our Web site at www.cancer.org
American Cancer Society in Birmingham:   Nancy.Price@cancer.org