Kirklin Clinic Head & Neck Cancer Support, Birmingham, AL
Distributed by American Cancer Society
Pat Sanders, Editor
First Quarter, 2009
Choose to be a Miracle
by Debi Austin
I think the longer our time on this adventure, the more adaptable we are. The sound of my voice is not communication; the words I use are. The instrument I use does not define who I am; that is based on the actions I take.
Being social was often difficult for me. Still is. My communication skills were lacking on a personal level. Oh, I could bully the bullies and incite enthusiasm over social issues. I could throw a riot at the drop of a hat, but to sit and drink coffee over mindless chitchat was a real test for me. I grew up in the 60's but I was far from the "flower child hippy". I was classified as a "militant hippy" by lesser minds. My adventures into the 90's seldom left my chosen path.
When I was told of my upcoming surgery and the expected aftermath, I was in shock, much like everyone else that hears the word cancer, and an explanation of this adventure. But, perhaps because my personal issues were different, how I would sound was not as predominant an issue as it might have been for someone else. My issue was to be understood. To be heard and listened to. I had a mentor that jokingly said, "If you are going to work for change and social issues, they will never forget that voice!" Some may find this an insult but I understood it as a possible advantage.
When I first had surgery, I had radiation damage, scar tissue and a double chin. This situation called for the use of a CooperRand. No problem. Did people look at me funny? Of course they did, it was just as unusual for them as it was for me. Was I going to let someone dictate the quality of my life because they needed to understand? NO! I know when the options are limited. You do the best you can with what you have to work with and life is good, you have made a choice to live well. I do not understand settling for the convenience of others.
I had strong, wonderful people in my life. From the laryngectomee community to my personal relationships. No one was going to let me be handicapped and they were not going to let me quit. I love my friends and caregivers and they were stubborn with my rehab. "Do it yourself," was often used. It worked. What I could not do was not the issue; what I could do was celebrated.
A wonderful friend called me everyday I was in the hospital after my surgery and gave me strength and hope. The nurses were dumbfounded by the code we had worked out.
When I came home from the hospital with my CooperRand, my mother told me I needed to put a new message on my answering machine. "Is it me or is it Memorex? If you can't tell, leave a message." I did it. The first time I went to a restaurant, my friends sat there and forced me to order for myself. Did the waitress look shocked? Of course she did. I had never seen or heard a laryngectomee before so why would I imagine that she had? She apologized and asked me to please speak slower. We had contact! This was going to work.
A young lady store employee called Security because she was afraid I was a thief scoping out her store. I had some 29 cent sales jerk tell me if I would learn to speak he could help me. Believe me he understood the next sentence perfectly. I can count on one hand the number of negative encounters I had in 16 years as a laryngectomee. I learned that you shouldn't take life so seriously.
Because I had been a writer and a trouble maker for so long I had rule #1 engraved on my eyelids, "Use as few words as possible to make the most impact." My voice was going to be the least of my problems. I didn't care how people looked at me. I was getting their attention, which was what I needed.
I still went to the same places, communicated with the same people. I did have to send faxes to some of the people I needed to do business with because email was not as dominant in our lives 16 years ago. Yes, I had people look at me funny, but you know, when you are a 300+ pound woman, people always look at you funny. I was an old school motorcycle rider and looked like it. I was once described as an obnoxious, tattooed, fat, biker chick with a hole in her throat. Pretty much sums it up. Any one of those gets stares; put them all together and you get double-takes.
I know that so many in this community have a hesitant stance on socializing after their surgeries. I do not take this lightly. Laryngectomees are my hero's. The walking warriors among us fought that silent battle so unsettling that most people can only refer to it as the big "C" because to say the word cancer terrifies them. We are afraid that people will look at us strangely. We are afraid that people will think we sound different. Well, we do sound different, and sometimes we eat funny, we make more hand gestures and we often have to play charades when words are hard to say. Nothing about this is negative; it is only different. And to tell you the truth, we are more judgmental than the "outside" community is.
We want to fit, just like before. Get over it. We can't, we don't, we won't, and it does not matter. We fought a life threatening battle to continue a journey well worth fighting for. We did not fight this battle to be isolated by what someone else may or may not think. A young child thinks you are entirely too cool and a possible robot, you stimulate their imagination. Pretty awesome, don't you agree? To someone beginning their journey into the unknown medical world, you inspire strength and hope. That is pretty amazing to me. To someone questioning their inner strength, you are the most inspiring person they can imagine. You rock! Wow! And all you have to do to accomplish this is to walk into a room and smile.
I grew up in a time of great social change, considering good or bad as a personal opinion. I was not raised to sit at the back of the bus or quietly watch abuse and it was a bit too late for me to start. Too often we expect the world to change because we have. That is not going to happen. Not only do we have to learn, but it becomes necessary for us to teach. But when we do, amazing things happen, people see the light bulb go on. They understand the miracle standing in front of them. The amazing strength and will a laryngectomee has to survive. I have never met a laryngectomee that did not inspire me. We are a gift to the world through survival, courage and understanding.
Continue this adventure! Go to a wine tasting, have a beer bash, a Superbowl party, join a coffee clatch or have a roller skating party. You inspire thought, you allow people to redefine their personal choices without judgment. You can accomplish more on a social outing than oh so many do in their entire lives. The indignities of this surgery can be devastating but the choices, later, are the miracles in life.
Don't look back; it isn't there anymore. Look to the new beginning, it is an amazing adventure! This is "Plan B", live and in color!
Lary since 1992
Make Your Yearly Checkup a Good One
By Pat Sanders
Sometimes we get so wrapped up in being a laryngectomee and so concerned about the possible health issues involved, such as after effects of surgery, radiation, and chemotherapy, that we forget there are other illnesses we must watch for, treat, or prevent and sometimes there are crossover effects.
When you go for a regular checkup, you will be automatically checked for many diseases and many tests that cover common problems, such as hypertension, high blood sugar, and high cholesterol are usually included in the blood work. They often do not cover thyroid problems unless you request it. If you already take medication for thyroid, as many of us do, they should automatically check you once a year. Obviously, if you are diabetic, you have testing regularly or if they know you are hypertensive, you may be taking your own blood pressure at home or stopping at the local fire station.
If you fill out the checklist like my doctors all seem to hand out, you have to check off 50-100 items with yes or no answers. The doc can look down the list and spot items to ask about.
You might want to make your own list of questions or comments on how you live (and make a copy, so you have one to look at and you can hand your doctor one). Have a pen so you can make notes as the doctor comments.
Start your list with naming the other doctors you have seen and when: your ENT for your throat check, eye doctor and the cataract surgery you are going to have, dentist and the infected tooth he pulled. Do it in an orderly manner and start it well in advance so you can makes notes about when you get dizzy, faint, or fatigued. Note how many nights are restless or sleepless and what time of night. While you don't want to write a book, you do need an outline.
Include a section for what you eat and drink. Not every item but if you are a vegetarian or take extra vitamins, make a note. If you have three drinks every night, make a note. If your taste has changed and you crave sweets, make a note. If you are having trouble swallowing or chewing, list it. These things mean something to your overall health and your doctor needs to know, not in detail, meal by meal, but to get an idea other than your statement that you "eat good."
Getting short of breath? Pay attention to why. Coughing a lot. What sets it off?
If you have noticed any skin blemishes that are new or have changed in size or color, put those on the list. Aches and pains? Where, when, how often, and how bad?
Your doctor can look down a list like this and in 5 minutes know more than 30 minutes of you trying to remember what you wanted to tell him.
He knows what medications he has prescribed but which ones are you taking?
Are you adding any OTC (over the counter) or others that he doesn't know about?
Are you getting any exercise? What kind? How much?
My memory is not good enough to retain the information until near time for all of my yearly appointments so I make my list on the computer, using Word, and update it whenever I need to. Being a little lazy about entering each item as it happens, I check my calendar for appointments I kept while updating any health notes.
Having your list should get you a better checkup and diagnosis so start your list now for better health.
An Email Question During Year One
A few months back, my wife and I went over to a relative's house where the home is heated with a wood stove. It produces so much smoke that they take the batteries out of the smoke detector to keep the alarm from going off. About 20 minutes after we got there, I started feeling bad, coughing and dizzy, so much so I gave my wife the car keys and asked her to drive me back home. It was about three hours later before I could breathe without gasping and it scared the heck out of me so I have not been back to that house. Is this adverse reaction to smoke normal? I do not have a TEP or a HME just use a foam cover under stoma cover!
Just the other day, my relative called asking me to come back over and help him do a little work on the house. My wife told him I could not come back over because of the smoke and soot filled house. He said he would open the windows and air the house out. My wife said, No, not after the reaction she saw. He was worried about the cost of hiring someone to help him. I realized that my health was not his concern, just his money, when we both have enough money to hire this done. People are inconsiderate to not take into account the health and welfare of others.
Tell me if others run into this.
Still in year one.
To my first year friend,
People who do not have the problem have a harder time understanding why you do. If it doesn't bother them, they think it can't be too bad. All that smoke was going directly into your lungs. NEVER good for anyone to breathe that but harder on us, without the usual filtering of the nostrils and upper airways. It will likely get easier in a few years as your system gets more accustomed to breathing differently but you should refuse to put yourself into situations like that.
I had to tell everyone...no smoking, no perfume when you come to see me. To house guests, I said NO hair spray to be used in my house. Had a friend come through town and she brought her younger cousin with her. Young girl who had to spray her hair like a helmet and thought if she closed the bathroom door and turned the fan on, I wouldn't know....because I couldn't smell. Did it deliberately after I had told them I couldn't handle these air pollutants.
I got into someone's car in my first year to go out shopping and I nearly went into an asthma attack and I don't even have asthma. There was so much air freshener and perfume and hair spray that I felt like the air was thick.
These were shortly after my surgery and I still have rules but I can tolerate more now. I still get in a group and there will be someone wearing aftershave or perfume and I will start coughing. But I also find that after breathing heavy perfume, I can move out of the vicinity, then, occlude to speak and the upper respiratory system floods with the perfume that was breathed into my lungs… I smell it and, worse, I taste it. We cannot depend on others to know this problem and be considerate for us. You have to make your rules and stick with them but don't get upset and don't fuss... Just know that you have to be responsible for your own health and you breathe in enough dirt, chemicals and oils by accident without putting yourself in the way of breathing things that bother you. Other people do not understand and many think we are being overly concerned.
I wrote several articles about using cleaning products a few years back, suggesting no aerosols and suggesting ways of using cleaning products without getting so much in the air that we breathe it into the lungs. You can't eliminate everything but do the best you can to avoid smoke from any source or fumes from gasoline and keep your house free from air pollutants as much as possible.
B’ham: Pat Sanders, 205-980-8416; email@example.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