Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
Pat Sanders, Editor
ONCOLOGIST AND LARYNGECTOMEE
The author of this article, Charles R. Tweedy, M.D. was treated for Voice Restoration at Head and Neck Surgery Associates in Indianapolis. Later, he wrote this article for the December 2005 “ Moving Forward”, newsletter of the Head and Neck Cancer Rehabilitation Institute, and we thank them for allowing us to reproduce it here.
April 19, 2004
Forty-seven years old but feeling twenty, cancer doctor, professor, lecturer, husband, father. Some would say a remarkable person, a caring person with a soft and reassuring voice.
April 20, 2004
Forty-seven years old but feeling one hundred, new laryngectomee, totally frightened and unsure about everything else. Some would say an unfortunate person.
I, like many of you reading this, was convinced that I was defined by my titles and accomplishments and had no real idea who I was. I had never been tested in this way and had no clue how I would perform. Before I was diagnosed with my cancer, I had devoted my life to the war against it. I had seen my own family members die of the disease, had taken care of thousands of patients through consultation, counseling and prescription of therapies.
We all envision how we may deal with certain types of tragedy when faced with it. And we are certain of our resolve. Then the cold harsh breath of reality is upon us, and we are stripped and left vulnerable. We wonder. I have always in some way understood the denial, disbelief, anger, and sadness that overcomes you when a diagnosis of cancer is made. It was not however until I heard that diagnosis applied to me that I could fully comprehend the level of anxiety, uncertainty, fear, and grief that consumes you. I suddenly felt life spiraling out of control and desperately wished that I could pause life for just a few moments.
Chemotherapy was, well, chemotherapy. I lost hair, I lost weight, I lost blood, but I did not lose the cancer. It was still pursuing and I could not find a place to hid. Surgery, laryngectomee, voice restoration, all terms I was familiar with and seemed to understand. How wrong again I was. I had generally only seen these patients after the fact, not during. I had no idea of the nightmare into which I would plunge.
“I am ready” would be the last words I remember uttering with my larynx to the surgeon in the operating room, a surgeon that I had recruited years before from M.D.Anderson, a friend. I lied. I was not ready! After returning from several drug induced days of coma, induced for multiple complications, I caught a glimpse of myself. I did not know that person looking back at me. I could not comprehend the disfigurement, the pain or the level of frustration that comes with not being able to express yourself with speech. I had IVs and tubes everywhere. I was screaming, but no one could hear me. I prayed for death because I could not envision life like this.
I was, of course, visited byphysicians, nurses, chaplains, social workers and family. They all said that it would be OK. They were all clearly sincere and well intentioned. It was clearly NOT OK! I was then visited by the speech pathologist that I had briefly seen pre-operatively. She sensed that I was struggling and suggested we begin work immediately, even though it was the last thing I felt like doing. She introduced me to several other laryngectomees who were brutally honest and said that being a laryngectomee was hell in a way but that life could be worth while again and a so-called “new normal” could be discovered. I was inspired to try.
So I find myself today searching for that path of “new normal”. It is truly a voyage of discovery. It is a journey that will likely take a lifetime and one that has no map with which to guide you. Many failures and successes are sure to follow. I have learned first hand, thus far, a tremendous new respect for the power of the human spirit to overcome adversity. I have a new sense of the courage and drive for sustaining life that propels us forward. I have a deep appreciation for the value of prayer and the love and support of family and friends. I admire those waging this battle because I know all too well, that this is a personal examination like no other. It is a test of your will to exist and it requires you to sum all of your courage and energy to win. I am also dedicated to the idea that all of us have a moral and ethical responsibility to help others through this arduous journey.
I have been helped by this quotation: Booker T. Washington once said, “Success is to e measured, not so much by the position that one has reached in life, as by the obstacles which he has overcome.”
I wish you success and am proud to those engaged in this struggle.
Hope is grief’s best music.
Looking Back – 40 Years
By Eve Jowers, Birmingham, AL
March 18th will be another anniversary for me, 40 years, quite a milestone, since my laryngectomy surgery.
I thought I had no symptoms of trouble until I go back and remember a tightness in the neck and throat when I sang, which I loved to do. Not I was ever very good but I sang for the sheer joy of singing.
My problem was noticed when I went for an annual checkup to renew my cosmetology license. When examining my neck, the doctor remarked that I had a large “#^%^&” or that was what it sounded like to me since I had no idea what he was talking about. It was something I had noticed for years so I thought it was no problem; however, he made a call to another doctor and sent me over to see him. That doctor performed and exam and biopsy and found a tumor. The next step was a treatment of radioactive iodine and hope the tumor would be eliminated. For about a year, everything went well but a subsequent checkup resulted in the laryngectomy.
One of my customers knew a lady who taught esophageal speech so before having the surgery, my husband and I went to visit her. She was having a class at the time and asked us to return in an hour. I think God she didn’t invite me to sit with that class for I might have refused to have the surgery. As I discovered later, to learn esophageal speech, one has to learn to burp. Well, I was a lady and had been taught that a lady never burps in front of strangers. Oh, my! My class was made up of seven strangers, all men. I was young and they were all encouraging. When I said my first word, there was a standing ovation. That was a milestone. It had taken me six weeks and many tears before I got that word out (with a lot of coca cola to help burp).
Recovery was quick I was only 36 years old and had a family to take care of. My five children were 11, 9, 7 twins and 4 years. My husband was very supportive, as were my church family and neighbors. One of our greeters at church would not let me in until I said “Good Morning”. My Sunday School teacher would wait while I wrote a question or an answer. Often, at home, I would write my “2 cents worth” but by the time I had it ready, the subject had changed.and my husband would say, “What are you talking about?” There have been ups and downs over the years but we all have those and it’s a part of life.
After the surgery and being released, the doctor said, “I have done all I can. No chemo, no radiation, just enjoy your life.” I remember telling a friend, “I’m not afraid to die but I pray God will let me live to raise the children.” He did. Today, four of my children are grandparents. I’m a great grandma and feel very much loved by all.
You would not believe where we have been working as Red Cross Volunteers for disaster relief, which we had retired from three years ago. We have been doing volunteer work here in town with a shelter for Katrina (and other hurricanes). We also work at events here in the area. If you are low in spirit, help someone. There are lots of opportunities out there.
So….Happy 40th Anniversary to me!
3615 Highway 11
Pelham, AL 35124
HEAD AND NECK CANCER
THE “OTHER” CANCER
By Tina Long, Suwanee, GA
With every cigarette smoked and every morsel of tobacco placed between cheek and gum, a person is placed one-step closer to head and neck cancer. When continual alcoholic consumption and/or marijuana use is added, that same person is sprinting to the possible loss of a tongue, cheek, lips or larynx. This may mean losing the ability to swallow, speak, laugh out loud, and even smile.
I’m one of the lucky ones, who has only lost my larynx (voice box.) Surgery was all that was needed to save my life. Since my cancer was diagnosed early, I was able to escape radiation therapy and chemotherapy. Again, being blessed with physical capability and excellent health insurance, I’m able to use all the medical innovations that enable me to speak without using a hand held mechanical device.
Yul Brynner (The King and I,) George Harrison, Richard Rodgers (Rodgers & Hammerstein,) Ulysses S. Grant, Jack Klugman, and Sammy Davis Jr. are some of the “well known” people who have battled head and neck cancer.
Breast, lung, prostate and colon cancer are the more widely recognized cancers with numerous fundraisers and awareness campaigns. We, the head and neck cancer survivors, have been quietly taking care of our own.
We have local support groups, WebWhispers online, the IAL (International Association of Laryngectomees), and the Yul Brynner Head and Neck Cancer Foundation, Inc., which, with the hard work of the Emory Otolaryngology (ENT) and Oncology department - partnered with St. Joseph’s Voice and Swallowing Center, have formed the new Georgia chapter of the Yul Brynner Head and Neck Foundation, Inc. There are other state chapters organized as well.
It is time that our cancer is publicized and our stories heard. Our survivors and our “Fallen Heroes” deserve a voice. We have people from every walk of life, suddenly loosing their jobs, homes, families, hopes, and lives. Many individuals go through surgery, chemotherapy, and radiation therapy, only to go home unable to speak or eat, scarred for life, both physically and mentally.
Our group deserves the same support and public awareness as any other cancer. So many families have been and will be affected by this silent disease, which leaves so many silent.
I challenge other Head and Neck Cancer Survivors to get involved helping to improve the care and quality of life for all Head and Neck Cancer patients and survivors. To get active:
Ø Learn the skills of speaking to our adolescents and teenagers about the risks of tobacco use.
Ø Learn how to share your own personal story to educate all health care providers about our special needs.
Ø Get involved with the Head and Neck Cancer Survivor groups in your area, or start your own state chapter of the Yul Brynner Foundation for Head and Neck Cancer Survivors. Go to yulbrynnerfoundation.org
Let’s all do our part to educate the public about our cancer so, instead of strangers looking at us quizzically when we speak, people will acknowledge us with their newfound wisdom as the strong and vital survivors that we are.
Getting Back To Work by Bill Whittle, Louisville, KY
I work for the American Red Cross who contracts with the State of Kentucky to do the first aid at the Kentucky Fairgrounds. We staff stations at the fairgrounds and convention center when there are shows going on, ie state fair, horse and cattle shows, commercial shows and others. This is usually all the time. We do not transport; we are 1st line care until our Metro EMS arrives and does the transport. Basically we are an EMS unit without ambulances. There are 40 of us, EMTs and paramedics on the team. We cover the fairgrounds inside and out, which is over a million and a quarter square feet under roof.
The last I worked was two days before my laryngectomy surgery on November 18th, 2005. It is bad when you know what is on TV at any given hour without looking at the TV guide. I was asked by my fellow workers "WHEN are you coming back to work?". Not ARE you coming back. And that made me feel good. I talked to my boss and asked her what she thought. She said when the doctor releases you, let me know and I will put you on a short shift for a couple of weeks. So on January 17th, I went back for 6 hours and the next day, I was there 4 hours. . It is great to be back. I had my EL and was afraid that would be a problem, but everyone said they had no problem understanding me. When it got real noisy, it didn't work that well but, in this line of work, treatment is the same whether you can talk or not. If you and your partner have worked together for a while, things come automatically. It was just super to be working again. Now I look forward to getting back to my hobbies, wood working, tole painting, and camping.
I can't wait until I get my TEP, which the doctor says he can do when he feels my stoma is ready. Now I am looking at that in about 8 weeks and it should make thing even better.
I do have a story to tell. Last evening my wife and I went out shopping and ended up at Cracker Barrel eating dinner. We were sitting at our table talking, waiting for our meal.
I had elbows on the table, like Mom used to yell at me for. My Servox was in my left hand and my right hand wrapped around my left. I guess the Servox was hidden for view, but that never entered my mind.
All of a sudden the gentleman seated across the aisle from us got up and tapped me on the shoulder. He said his wife asked him to tell us that our cell phone was ringing and she didn't want us to miss a call.
I thought: Boy, she sure has got good ears; our phone’s out in the car. Then it dawned on me that she was hearing my Servox, so I held it up and pushed the button. She got very red and hung her head. But, I have been reading a smile fixes a lot of things, so I gave her a big one and could see that she felt better.
Thank you to WebWhispers for being there, I am grateful for all the information I have gleaned from this web site since I found it last week. I have had no one to talk to or learn from about the ups and downs of being a lary. I have spent every waking hour going over the site. There is so much information there that I don't think I can retain it all but it is always there and I can go back and reread it. I have been trying to figure out a way to do CPR on a patient now that I am a neck breather and WW has even helped me with that.
I love the emails I get from mail-list, they are so informative.
B’ham: Pat Sanders, 205-980-8416; firstname.lastname@example.org