Head & Neck Cancer Support Group
Kirklin Clinic – Birmingham, AL
distributed by American Cancer Society, edited by Pat Sanders
Laryngectomee Father/Laryngectomee Daughter
I was asked to share my thoughts about being a lary after having a father who had a laryngectomy and how this affected me pre and post-op. Thinking about how to write it sent me down an old, old path and forced me to face many of my own failings as a caretaker to my father. He died five years ago but not from the cancer. I think life just got to be too much for him. So here is our story and my apology to my father and others to whom I have been less than accepting or to whom I acted as though I were superior.
My father, John, was an old fashioned Irishman, with all of the stereotypes associated to that heritage. He was a second generation first son, with six siblings raised in a one bedroom house in South Dakota. His father was as tough as they come! John worked three jobs to support the family and had a work ethic that was tough to match. He won a scholarship to Marquette in journalism but turned it down because his family needed any money he could make.
So John went on the road and sold as only an Irishman can. In his travels, he met a beautiful redhead, fell in love, and they married. A more mismatched pair would be difficult to find! Kay was an only child of a doctor who, after divorcing her mother, spent the rest of his life spoiling her. Her mother took in boarders to get Kay the things she wanted and her father lavished her with extreme gifts. How many young girls in the '30s had fur coats?
Both of my parents were very good looking, almost movie star perfect and Kay believed that John would take care of her as she had been accustomed to. He entered the Air Force days after I was born and he was never forgiven for that. After he returned home safely, the family grew to five children. Problem was that no matter how much money John made, it was not adequate to meet Kay’s expectations and their relationship suffered greatly. They both already smoked, John always smoked Camels, no filters and Kay chained smoked Salems. The stress of five children, and the need to accept that their dreams would not be what they had hoped for, diminished them until they both started to drink and spousal abuse often occurred after heavy drinking. Yet everyone loved them!
I became estranged from my mother. I loved her but didn't like her and would not have wanted her in my bridge club if you understand what I am saying. I was close to my father. We were both readers, highly verbal, had wicked tongues, and frequently left the rest of the family out of our relationship. I was the only one to go to college he was so proud! I became a nurse with a degree, quite rare at that time. Being the overachiever that most children of alcoholics are, I just kept pushing. My first marriage fell apart because just like the literature, I married a man who was abusive. My second marriage has saved my life (and Dad’s) several times.
One day my father called me to say that he had cancer of the vocal cords and what should he do? He had none of the traditional symptoms but his PCP referred him to the VA hospital in Iowa City that had a relationship with University Hospitals. I begged him to get a second opinion, to consider radiation, not to just blindly follow what the doctor said but he was of that generation where you did exactly what the doctor told you to do. To this day I believe he could have kept his voice longer if had been aggressive in seeking second opinions. And of course I was such a pain in the ass being Florence Nightingale in disguise! I rushed to his side prior to the surgery. When I heard my mother (who was carrying a vodka bottle in her purse) say that John deserved to lose his voice for all the bad things he had said to her over the years, my heart turned to a cold, cold, stone. I had difficulty being supportive to her but in retrospect I see that it was her way to express her anger and sorrow. And here was I, Miss "Smart Ass", making judgments about a relationship between two people who had been together for 35 years at that time.
John was fortunate. There was a hot shot young surgeon, Dr. Pangie, who was working on voice restoration 30 years ago. He created some sort of a slit in John’s common wall that would allow him to talk when he occluded the stoma. At that time it was a miracle. And there was no InHealth, Provox, Jim Lauder, filters, or housings, just an open stoma. Dr. Pangie took Dad on the road which was the delight of his life. My Irish dad loved to show off. But then he stopped. I suspect it had something to do with the fact that the only place he was accepted was at Pangie seminars and he had to figure out how to return to work. Well, that was never to be.
John had been an excellent cook. All the Irish bars would ask him to cater events. When he lost his sense of smell, his cooking suffered and Kay was no help. She was deep into despair and booze starting with her soda being spiked first thing in the morning. We tried everything including admitting her to a detox center from which my father "rescued" her 5 days later. So all the siblings gave up but "Florence". I lectured, I sent meal planners, I talked about AA, and the response was nothing. So finally I, too, withdrew.
Then suddenly Kay died of colon cancer. And John was furious! He was suppose to be the first to go! How could she do this to him? What would happen to him? Against whom could he strike out and have them accept it?
After the funeral, the siblings gathered around the kitchen table to discuss what to do next. Some of us were in better financial situations to assist. So the task, which we accepted, fell to my sister and me, who both lived in the metro area of Minneapolis/St. Paul Minn. Dad lived in Iowa. We moved him and made adjustments to both our homes that included installing new bathrooms on the first floor. And since he was difficult, we agreed to give ourselves a break and have him split his time between our homes. That way he could also have a break, see grandchildren, and have a change in environment.
By this time I was no longer Nurse Ratched, I was a hurting daughter not knowing how to help. His drinking increased to proportions only an Irishman can tolerate and be proud of it at the same time. Since my husband and I both worked, he was alone most of the day.
We tried to get him out (by this time he had a walker). He didn’t have the advantages we do now of prosthesis, filters, and covers and his coughing would disrupt a room full of people. He never learned to accept that he could not eat and talk at the same time but used hand gestures that were funny at home but very inappropriate in public. I am ashamed that I was embarrassed by him and now I am proud of how he looked back at everyone with a stare that only a defiant, proud person could produce.
Finally after a number of incidences such as: he forgot he had put chicken wings in the oven, he broke a chair and tried to hide it under the porch, and finally fell outside from drinking too much, we accepted that we were not capable of taking care of him. My dear, dear husband and my sister found an excellent nursing home just 3 blocks from our house. And this is when my husband became a saint. He visited every day, taking the newspaper, buying books with large type, and trying to talk with him. John was failing fast mentally and physically. Although he never said it, he was very angry with all of us for putting him in a nursing home.
I had to move to accept a new job and my poor sister got stuck alone with what we use to share in terms of caring for him. It was a very rough year for all of us. He had come to love my husband more than us (even though in the beginning he never approved of a second marriage, you know, that Catholic thing). And when we moved and he could no longer walk the 3 blocks to see us, although my sister and her husband drove miles and miles to check on him and frequently took him home, he just kind of gave up. I flew back from Philly many times having been told that he was dying. Well, he was, but as usual on his terms.
Fast forward 20 years, I had always had a hoarse voice that most people said was "sexy" and I really didn’t pay much attention to it until I lost it. At that time the treatment was to strip the vocal cords, a procedure I had done about 5 times. By then, I had a persistent ear ache, voice was gone, had a misdiagnosis, no relief, another doctor, and was told it was stage 4 cancer. Because I had been in health care I was fortunate to get a referral to MD Anderson almost immediately. Dr. Ghelpert saved my life. Jan Lewin gave me my voice back.
I am almost 2 years post op. And I think so often of how embarrassed I was of my fathers attempts at assimilating back into the main stream. And how I held such high standards for him, standards that no one could meet. So how has this affected me and my recovery? Dramatically.
First of all, I was frightened that I would sound like him (and to me I did for the first few months so I just didn’t talk). I have had to accept that both of us smoked and this is the result. (My mother also had cancer of the tongue and cancer of the colon). I was highly verbal, as my father was, and I miss that. I also have had trouble finding employment in my field of health care consulting, just as Dad did in his area of cooking.
I am so afraid that my grown children will be ashamed and embarrassed by me as I was by my father. I am sure they have bad memories of their grandfather struggling for acceptance and don’t want to see a repeat with their own mother, so email saves us. I have a support system my father had only infrequently and that is my husband. My husband is all accepting, creative about my needs in ways of wardrobe, pressure bands, etc. And thanks to Dr. Lewin he is as knowledgeable about larys and equipment as any SLP student.
I sought the help of mental health professionals to help me cross that river of depression, something my father would never do (I think it was a testosterone and generational thing.)
I am not as accepting of what I am told by health care professionals as my father was I have the advantage of the computer, can do research, have WebWhispers, and have the encouragement of the MD Anderson staff to take as much responsibility as possible for my own care. They have taught us well.
I am impatient with young professionals that act as I did, with a "know it all" attitude and their sense of impatience. I want to shake them and say, "been there, done that…and DON"T!"
I not perfect, but I am expanding my capacity for acceptance of others with their differences, being less judgmental, affirming my gratitude and love for those around me that have helped and continue to help (including my wonderful pets). I have a responsibility because I am still alive, to help others and that help should not be limited to the lary community.
If I need to reinvent myself in order to make a living, I think I can (full of bravado but terrified inside, always waiting for the next shoe to drop). I NEVER in the last 50 years thought I was special. But maybe I am, because of my father and watching him stare down looks in public places, never losing his sense of humor, and wicked tongue. Maybe his example has enabled me to reach out more, to work hard to adjust, and to be proud of him and our heritage. And to forgive both of us…….
Vicki Eorio VEorio@aol.com
This letter was sent by the "Making Choices" coordinator for the Tuscaloosa, AL County School System to Charles Lamar, <email@example.com>, who worked with him for the last two years.
Hope things are going well for you and your family. I just wanted to let you know that on Wednesday one of my teachers told the students that he had set a goal to stop smoking. He said he had decided this after he had met you and had heard what you had to say. He said he had seen people on tv and the news that had lost their voice but not one in person. He likes to sing and decided that he was going to quit thanks to you and your influence. Thanks! You did such a good job in talking to these groups and encouraging them to do the right thing and at least one of them did. Keep up the good work and thanks again for coming and speaking with my groups.
Hope everything went well in B’ham today and everything goes quickly and easily when you have your surgery. Good luck and Thanks.
P.S. I’ll drop you a line when my co-worker gets her schedule set and see if you can come speak to the students at the elementary schools. Thanks again.
3 pc dinner by Vance Redden firstname.lastname@example.org
Well, I thought it was over. My Servox voice sounds more like me every day, which means, I’m getting used to it. At least once a week I dream about me miraculously finding out that while I was sleeping, God made my larynx grow back, like a reptiles whatever it is that grows back, and I find myself in a nightclub playing the piano, singing and crooning away to the ladies delight. No, I can’t play the piano either. All in all, I have accepted the fact that this is not going to happen and I use a full battery in my Servox every day. Boy, can I talk, and everybody seems to understand me completely. Until last night, that is.
Popeye’s Chicken started it off. I wanted a 3-piece dinner of chicken strips, with two side orders. Once I had that order, I told the clerk that I wanted another order, exactly like the first. "Two Orders," I said plainly. She nodded in agreement and told me that it would be $5.71. I knew that couldn’t be right, because the 3-strip dinner alone was $4 bucks and I had ordered two. So I spoke right up.
"You must have misunderstood. I want two dinners exactly alike and you only charged me for one." "Oh," she said politely, "two pieces.
"No," I was beginning to get irritated. Not 1 two-piece dinner, but 2 three piece dinners."
By now the Hispanic clerk was getting nowhere fast and becoming more confused in the process. A black man, overhearing the conversation, stepped in, smiled at me, wagged his finger for my silence, and tried to help. "Let me," he started. "This man wants two dinners. 3 piece dinners with 2 side dishes for each one.," he said to the clerk. He smiled at me, knowingly, and stepped back to observe the results.
By now there were two other employees edging near to see what all of the commotion was about. "What side dishes do you want," another asked. Now we were getting somewhere. I smiled at the new clerk and said, "mashed potatoes and cold slaw." Everything was going fine. "The original clerk, now operating the cash register frenziedly said, "That will be $7.99. Oh no, not again. How on earth could two $4 dinners cost less than $8 with even more charges for the additional side dishes. I decided to count my blessings and shut up and paid the bill. A few minutes later, the dinner came. I looked into the package. One 3-piece meal with cole slaw and onion rings. I thanked them profusely, and headed for the door. I had enough of this. I arrived home shortly thereafter.
My wife, Stella, opened the bag and looked at me questionably, "Didn’t you get anything for yourself?" "No," I replied, "I wasn’t hungry."
"Well, for God’s sake," she exploded, "you know I don’t like onion rings. I told you mashed potatoes and cole slaw." I shrugged. "Next time I’ll go myself," she growled.
I put my Servox up to my throat to speak, but changed my mind and headed for the bedroom. "Where are you going?" Stella yelled. "What am I going to do with these onion rings?" I just kept going. Tomorrow is another day.
(Vance Redden's new book, "Good God, The Book of Bird", is available on his web site at www.bstmall.com/books.html)