Kirklin Clinic Head & Neck Cancer Support, Birmingham, AL
Distributed by American Cancer Society
Pat Sanders, Editor
First Quarter, 2008
DREAMS AND THOUGHTS
By Carole Matson
"Good night, sleep tight; don't let the bed bugs bite".
When we were young, we dreamed and thought in our "little child" voice. When did our inner voices change to our adult voices? I can't remember. Can you?
Eight years after my laryngectomy, I still think and dream in my "original" voice. My old voice is still with me; every thought, every dream. There is no lary voice. It exists in real life, but not in my dreams; not in my thoughts. I try very hard to think in my lary voice, but my old voice always comes through. My dreams are the same as they always were, as I dream in my original voice. Funny though, in my dreams, I do occlude to talk through my mouth!
Maybe I'm in denial? No, I enjoy my life now. Maybe I just can't hear my new voice so I can't relate to it? No, I hear it on messages and recordings. Why, then, don't I have a lary voice in dreams and thoughts? If I try to think in my voice, it sounds (in my head) like a voice I don't know, not me.
How can one remember the old voice after so many years? In my thoughts and dreams, I hear my original voice perfectly. I remember it as though I spoke this way just yesterday. I can think all day in my original voice with no hesitation. Think, think, think. Oh, and the dreams are fun, no limitations. No pain from radiation. No nerve damage from radiation.
Laughing is different. I cannot remember my laugh. I loved laughing, but my laugh eludes me now. Everyone used to tell me I had the greatest laugh, from the heart or, as they say, from the belly!. What was it like? I miss my laugh the most. I want to think or dream in my old laugh just to hear it again. As a lary I have not yet found out how to laugh spontaneously. I must laugh with a "tee he" or maybe a throat sound, maybe just a smile. I'm still trying to figure out the laughing part of being a laryngectomee. It is the hardest part of the loss of normal voice. How weird, to think and dream in my original voice without memory of my laugh.
What about whispering? I don't know about you but when I whisper, it's an "original voice" whisper. Where does that come from? How does it do that? After eight years as a lary, I have become a pretty good whisperer...Oh..and I have horses; guess I'm the "horse whisperer"! Plus, most of my family and friends have learned to understand my whispers. I just had a thought (in my original voice, of course); wouldn't it be great if they could hear my thoughts?
So, I had a laryngectomy, which caused the loss of my normal voice and I speak with a TEP. However, of the four ways I hear my voice. all but one is my original, normal voice. Only in my voice to others is there the lary voice. Thinking, dreaming and whispering is the voice from eight years ago.
Then there is laughing, a whole different feeling and one I would like to fully experience again.
COMMENTS ON THIS ARTICLE FROM CAROLE'S FRIENDS:
1. What a very hard thing to write about! After reading what you had wrote; I had to think back.....and realized that when you and I met; it was in the doorway of your room at Mission Hospital. All I saw, at the time, was a woman sitting up in bed with the most beautiful expressive eyes and I loved you right then! I would have so enjoyed having a glass of wine with you and "hearing your laughter"......because your eyes sparkled and I knew you must have had laughter that would fill the room.
2. Kiddo, it's not the sound of your voice that endears you to me, it's the compassion in what you say, that I'm sure is in your eyes, as well.
3. I'll never forget your laugh but remember you are the same loving Carole. I think it has made you more caring and THANK GOD we still have you with us. Incidentally. do you realize you have had two very lose encounters with death. That is an eye opener. I not only would thank God but sincerely ask him what plan he has for your life. He created all of us for a purpose
4. I remember your laugh and your voice from before eight years ago. Thank you for writing this article, it put things in perspective for me a little, of how much you have lost due to your cancer. It is so hard to walk in another person's "shoes". I'm so sorry for your loss.
When I Dream, I Dream in Voice
by GW "Fuzzy" Buck
When reflecting upon my life, I guess you could say I have had my ups and downs. No matter how low the "downs" have brought me, I've always felt that the "ups" outnumbered the downs. To quote Kris Kristofferson's line from one of his early songs: "the going up was worth the coming down."
I've had a good life, been married a couple of times, raised a couple of children and am well on my way to raising another. I have a good wife and life is generally fine.
As is often the case, a funny thing happened to me on my way to the rest of my life. I got cancer of the throat and had to have my larynx removed, thereby losing my voice. Although my voice is gone, it is not forgotten and I am alive and well and the cancer is gone. Thank God for that.
Now there is a new me, one that notices things I didn't so much before. One that is even more appreciative of a lot of things that I took for granted, for my first sixty years on this earth. The last two years I have noticed that I can still do most all the things I used to do, just in a more moderate manner. I have even learned to talk pretty legibly (Ha!) with my Cooper-Rand electro larynx. The acceptance of the fact that I cannot talk as well as I used to has been probably my biggest obstacle in my period of adjustment. Watching people learn to accept this fact and for them to realize that I am going on, in spite of it, is really amazing. This applies to my every day living from chores such as shopping and asking where a particular item is, to conversing with a clerk when paying a bill, to ordering food in a restaurant, to talking to my instructors in my exercise class, to talking to teachers at my child's school, to buying license tags for our cars, to telling the laundry lady - light starch, to telling my bowling partners - good game or good ball, to just communicating with my family and friends. "It is really a trip", to coin an old sixties phrase. But you know, I am getting by and getting better all the time.
Well, now that I am not talking as well as I did before my surgery, it seems that I do a lot of living in my head. A lot of things go unsaid since it is easier to just let it go than to try to express myself. Yet life does go on and though a lot of it is in my head, that's all right because my head is a pretty good place to be. Says who? Says me, of course. I have always been a very positive person and continue to be so. What I lack in voice, I make up with thoughts in my head, and I am now really and truly having some of my best conversations with myself. Well, you know, that I always have anyway, so it is nothing new for me. I have always been my own best sounding board and remain so now. No need to change a good thing that seems to work and is not broken.
I have recently noticed a recurring theme in all of my dreams. I have this beautiful voice. I am still talking with instruments, but my voice is concise and very clear. In my dreams everyone is very impressed with how good I can talk and are constantly bragging on it. I believe this is a sign that I am beginning to accept my shortcomings and that I am starting to feel good about my situation. No one can walk this road for me, I have to do it myself. I have had a lot of help to get to this point from wife, children, family, friends, doctors, Web Whisperers Network, and the Greater Atlanta Voice Masters, which is my support group here. To all of them, I am very grateful and will always be thankful for them. Its funny but in my mind and in my dreams I talk fluently, my body does not have all these operation scars, and is in fact quite handsome. I am beginning to think that I am going to be O.K. for the rest of my life. It has only been eighteen months since my larynx was removed and it tickles me to see people celebrating their first, all the way up to their thirty-something anniversaries. Yes I think I am going to be just fine in the future.
I hope this little recap helps some of you to realize that even though we are not talking, we are not silent. We can be heard wherever people are willing to listen. We can still function as complete and contributing individuals in a world full of different people. We are not alone. We can aspire to be " Whispering Giants" in this society and perhaps our misfortunes can benefit others and serve as an inspiration to stay away from the things that we did to get into this situation.
Thanks for listening,
by Tammy Wigginton, SLP
"Please just pick it up and look at it....just try it (artificial larynx)".
I had been pleading with her for 3 days. Our eyes met briefly. I saw her lower lip trembling. The tears, which filled her eyes, finally overflowed the lashes and splashed down on to her swollen cheeks. She put her palms up towards me and defiantly turned her head side to side. That is definitely the universal "back off sign". She then turned away. She was silently sobbing. It was all she could do. No noise. No cathartic perceptible wails or sniffles just jagged deep breaths and the sound of mucus being sucked in and out of her new stoma. There is no good way to prepare a patient for this experience. You tell them they will not have a voice but nobody really gets that no voice box also means no laughter and no audible cry until they find themselves in that situation.
I felt tears welling up in my eyes too; tears of empathy and compassion for her and frustration at myself. I bit the inside of my cheek a little to help snap myself out of it. It won't do her any good to see me crying....very unprofessional. Why can't I reach her? I tried to offer a pat or a hug. She was not having any of that. I skulked back to the nurses' station to document my failure on her chart. As I composed my note, I heard a husky smoker's voice asking for my patient's room. I went over to speak to the woman with the whiskey voice. She looked so much like my patient but a little older and perhaps a little worse for the wear.
She was in fact my patients' sister. She had just arrived from out of town. I gave her an overly long explanation of the problem. I prattled on and on: "throat cancer", "total laryngectomy", "a hole in her neck", "stoma", "suctioning, "feeding tube", "needs to learn to care for herself!, "needs to learn to speak again!", "discharge up in the air", "who will help her care for her?????" I tattled! "She won't work with me or the nurses!" Whew! I released all of my frustrations on this road weary lady who had just traveled God only knows how many miles. What a rookie I was.
Do you have any questions? She said, "No". "Really, no question at all"? "Are you sure you understand?" I searched the woman's face for some clue she understood anything I said. She looked at me and said, "uh huh" and took off toward her sister's room. I tagged along behind her as she walked down the hall. She went into the room and I stood out side the door and fiddled with supplies. I was spying, but trying to look busy.
The sister's eyes met. No warm embrace. No "how are you feeling?" She started in immediately. "Hey, that speech girl says you ain't even trying to learn how to take care of yourself or nothin". She pointed out into the hall and I ducked. Oops! Maybe I shouldn't have tattled. That is not exactly how I thought she was going to handle the situation. My patient shrugged her shoulders. I am pretty sure she was thinking; "So what or bite me!" They sized each other up for a couple of minutes. If the older sister was shocked to see her baby sister with a hole in her neck, drains, IV's and a big blue tube with humidified air aimed right at the hole in her neck, I certainly couldn't tell it. What a poker face! Finally my patient started looking for her pad and paper amongst the dirty tissue, empty saline bullets and the up until now untouched laryngectomee paraphernalia I had given her.
She wrote... "How do I look?" Her sister read this. Without missing a beat, she unbuttoned her rumpled and worn denim shirt with the Tasmanian Devil on the pocket to reveal a concave chest with two long scars and a mangled tattoo that at one time may have been a butterfly. Where the breasts had once been there was now nothing but faded scars and the unmistakably leathery skin one can only get from a radiation therapy. She told her sister....."You look like a friggin' survivor! THAT IS HOW YOU LOOK!!" Gasp! "Oh crap, she dropped the "f" bomb. I covered my eyes and thought "Oh no! What have I done?"
I heard a lot of noise so I peeked out from between my fingers to survey the damage. They were both laughing and crying at the same time. One sister laughed and cried silently. The other laughed and cried loud enough for two people. They hugged. It was not a gentle hug. It was a great big, hard hug and they rocked from side to side. Tubes were squished and lines were pulled. Tears and stoma juice was flying and neither one of them cared a bit. What a relief! Someone had finally reached her.
As I closed the door to give them the privacy they should have had from the get go, I saw an older and wiser sister walking her baby sister to the mirror. "If you want to know how you look, get up off your ass and go look in the mirror". "Your hair looks like hell...haven't you even bothered to drag a comb through this mess? "For God's sake!" "Let me help you". You know you talked too much anyway.....now maybe I will get a chance to talk". "Hey, guess who is getting a divorce......? And life goes on...........
As I walked away, I thought, "She won't be able to last long without talking back. Maybe, tomorrow, she'll be ready."
DREAMS - FRIEND OR FOE
by Vicki Eorio
I have to state that I am Irish, married to an Italian and am superstitious. Just in case I fail to see the superstitious side of an event, Frank will have a reminder for me. Like, "Black birds in the back yard first thing in the morning, mean danger. Be careful when you go out and watch for danger all day.", Frank will tell me. The evil eye is always there. Compliments are cause for the appearance of the evil eye. You must make the special sign over a baby whom someone outside the family has complimented.
On the other hand, I have been told that an itchy palm means money is on its way, someone with their eyes too close can't be trusted, a weak chin is a sign of weakness of character.
Then you add dreams to it and, boy, can you be confused! There is a hidden meaning in every dream. It couldn't possibly be indigestion or worrying all day about things like finances, health, and tasks not completed. Or never could it be the stress of dealing to learn life as a laryngectomee.
All of us have had dreams where we are talking "naturally" or people were avoiding us because we were larys or, in the dreams, we go way back to the comfort of family and being a child.
At first, I found these dreams frightening and very upsetting. But I have since decided that it is my poor old brain processing things while I sleep. Physiologically, we know the brain does a lot of processing at night. It helps us solve problems, files things, reflects subconscious feelings and works to deal with them in a logical manner. Because our brain is primarily logical and attempts to keep us balanced and also logical, it does not stop working when we sleep.
When Pat mentioned writing something on dreams, I did a little research. If you Google "meaning of dreams" you might not live long enough to get through all links that come up on your screen and soon everything starts to run together. However, I did find one book that seems to make sense when applied to us. Finding Meaning in Dreams: A Quantitative Approach. The link to the summary chapter is: http://psych.ucsc.edu/dreams/Library/fmid9.html. It addresses the recurrent dreams, the continuum of daily life and dreams, and how dreams can be helpful in resolving issues facing us.
In a different section of this same site is a list of articles and books from the Dream Research Library http://psych.ucsc.edu/dreams/Library/index.html
Another method of understanding sleep and dreams would be found in this ten part series by Dr. Mansoor Ahmed, who is board certified in four areas - sleep medicine, pulmonology, internal medicine and critical care. He is the Medical Director of the Cleveland Sleep Center and the Assistant Professor of Medicine and International Health at Case Western Reserve University. http://www.cerebromente.org.br/n15/mente/sleep.html
Entitled "Sleep, Dreams and Good Health", Dr. Ahmed says:
"The reason we dream is unknown. However, dreaming is an integral part of sleep and appears to be unavoidable. It provides necessary stimulation to the brain while giving us a safe and socially acceptable way to fulfill our wishes and dreams. Learning specialists feel that dreaming is important for consolidating what we have learned while we were awake so that we can remember facts and problem solutions for years to come."
All of us can recall dreams that were so traumatic, we wake up in a sweat or crying. We also can recall silly dreams that don't seem to make much sense in the light of day but are fun to remember and share. After reading from the books referenced above, I believe dreams, even when they are painful and scary, are part of our psychological healing. Our brain is dealing with things that may be too painful or frightening for us to face during the day or that we "stuff" down so we can function.
Let's face it, there is nothing we can do to prevent them so let's welcome them, knowing dreams like everything else in our journey, will get better.
HERE ARE SOME TIPS FOR JOURNALING DREAMS...
Get yourself a NICE dream journal. If you scratch down your dreams on scrap pieces of paper, or in general note pads, you'll be sure to lose them. Dreams contain valuable information. Honor your dreams. If you get a special book, you're more likely to make a point of using it, and keep using it...just for your dreams! Keep your dream journal by your bedside so you can easily grab it and use it.
Keep a PEN by your bedside. There's no point in having a journal by your bed with no pen close at hand. Designate a pen for your bedside and make sure it stays with your dream journal!
Write as soon as you wake up. You'll remember the most details as soon as you start waking up, so write dreams down as soon as possible. Also, if you wake up in the night remembering a dream, write it down then.
Give your dreams catchy titles...like news headlines so you can scan through your journal to find any dream you're looking for. If you don't have titles, you'll have to read through many dreams to find the one you're looking for.
Write down your dream in present tense so it will feel more real and using past tense, your will feel more distant and dried up.
Dating your dreams can be very interesting to look back and see what dates you had certain dreams. It is a meaningful way to review your spiritual journey. You may also be surprised how often you dream about themes before they actually happen in physical life.
Read your dreams back to yourself. Simply hearing yourself read the dream can often reveal some levels of meaning.
The more you make a point of journaling dreams, talking about dreams, and learning about dreams, the richer your dream life will become.
Edited version from: http://www.the-auras-expert.com/journaling-dreams.html
Kirklin Clinic Head & Neck Support Group
No meetings until further notice
In the interim, we suggest that you join WebWhispers if you have an email address.
We are also invited to attend an All Cancers group with a luncheon every third Tuesday. Call or email Pat Sanders if interested. (See below)
B’ham: Pat Sanders, 205-980-8416; firstname.lastname@example.org
Kirklin Clinic Otolaryngology : 205-801-8456 FAX
Glenn E. Peters, M.D. Glenn.Peters@ccc.uab.edu
William Carroll, M.D. email@example.com
Nancy Lewis McColloch, Speech Pathologist ; 205-801-8460; firstname.lastname@example.org
WEBWHISPERS - INTERNET SUPPORT GROUP FOR LARYNGECTOMEES
http://webwhispers.org is a site with helpful information on what to do before and after a laryngectomy. It includes educational sections on larynx cancer as well as a complete Library of Information, lists of Suppliers, the monthly newsletter, Whispers on the Web, and HeadLines This is the largest internet support group for laryngectomees and is a member club of the IAL
The Official site of the International Association of Laryngectomees
http://www.larynxlink.com Information is available for the IAL Annual Meeting &Voice Institute held annually in various locations. Educational and Fun.
A Laryngectomee site from the United Kingdom
http://www.laryngectomees.inuk.com presents information from all over the world and HeadLines newsletter is carried on their site under Letters from America.
For cancer information call 800.ACS.2345 or visit our Web site at www.cancer.org
American Cancer Society in Birmingham: email@example.com