Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
Pat Sanders, Editor
A Story of Survival by Gary Hurst
As survivors of laryngeal cancer, we are all heroes, and should feel proud of what we have accomplished. We have faced death and we have conquered it! To many people, this may seem a simplistic view, but really it is not. Let me try to explain why I feel that way:
Today is November 21, and seven years ago, my life changed. It was a normal workday when I arrived at the office where I sold books to schools, libraries, and other outlets for a “Major Media” company. Having adopted the lifestyle of a bachelor in Virginia since my wife had decided she wanted a divorce, I stopped at the company cafeteria, and got my blueberry bagel, cream cheese, and very hot coffee and went to my desk to organize my work for the day. I was one of those superstitious types (maybe a bit obsessive) about how I prepared for my day. A friend came by my desk and we decided to go out and have a cigarette before hitting the phones. This was always a fun time, as we would joke and kid around about something and get ourselves in the right frame of mind to talk with those poor overworked and underpaid teachers and librarians.
I had been told that chronic bronchitis and allergies were causing my regular cough but outside on this cool November morning, I had a really bad coughing spasm. The cough was very productive, and I was paralyzed with fear when I saw that it was tinged with blood. The memory returned very quickly that it had been painful to swallow the bagel and the hot coffee seemed to really burn that morning.
I called my doctor and got a nurse practitioner. She tried to calm my nerves, but I insisted on speaking with my doctor and demanded that he call me at work at his earliest convenience. I informed my boss since some employers have a tendency to get upset when you get personal phone calls at work. She was very understanding and told me she would let me know when he called. It felt like and eternity but the call came in less than an hour later.
The Doctor was alarmed I was still hoarse. He immediately referred me to an ENT and by a stroke of luck, a great friend of mine worked in that ENT’s office. I called her and she informed me that the recommended doctor was not available but if I could get to the office within 45 minutes, another doctor in the practice could see me.
My manager told me to go, and not to worry about the job. I left notes for my friend to make some calls for me and headed for the surgeon’s office. I got there, gave them my insurance card, driver’s license, and filled out the standard paper work. As soon as it was done, I was called back to see Dr P.
We small talked for a few moments and he grabbed that long nozzle of aerosol Lidocaine and sprayed some up my nose, and in the back of my throat. His assistant set up a video monitor and a long black tube (Laryngoscope). He inserted this up my nose, and once we got past the gag reflex, I got to experience the journey to my larynx. Soon the Fiber Optic camera located what I have described as “Spider Eyes” peeking from behind what I assumed was the epiglottis. He stopped here and then proceeded further to the vocal cords.
The scope was removed and he examined a couple of hard nodes in my left neck. I was asked to wait for another doctor for an additional test. They wanted to biopsy the lymph nodes. Dr P turned to my friend and asked her to schedule a CT Scan ASAP. Forty-five minutes later another doctor in a white coat came into the examining room where I was, by this time, a basket case. The doctor had already informed me that he had seen this so many times he was 90% sure it was Cancer.
My mind and body began to shutdown. Shock has a tendency to do that to you as many of you already know. I was already wishing for the bliss of ignorance. I didn’t want this, I didn’t NEED this. I wanted to jump and run….screaming like a lunatic into traffic.
They did a needle aspiration biopsy on the “Suspicious Lymph Nodes”. Thirty minutes later I found out that the results were inconclusive….no cancer cells present in the nodes could be found. By then the CT scan had been done and an operating room had been secured for the following Monday for an endoscopic biopsy of the “Possible Tumor”.
My friend’s husband had arrived at the office by then and I was in full shutdown mode, wavering between denial and dreaded acceptance that soon I would be dead. Cancer is a KILLER, right?
The CT scan was done the next day and I had the weekend to dwell on the upcoming biopsy. Those days were pure hell. I called my family to tell them what was going on and I sat and I worried. Monday morning I was told to report to Day Surgery at 7 AM. The biopsy was done about 9 AM and I was sent home I would be given the pathology report later in the week.
It happened that I had Thanksgiving Dinner with my friend’s family. That’s when I got the news. I had an appointment the next morning with the doctor for the results and to start discussing options.
The CAT scan showed possible infusion not only into the vocal cords but the cricothyroid cartilage since I was also experiencing ear infections and pain. I was asked to return Monday for the final consultation and development of the treatment plan, but already it seemed that surgery was the preferred option. Cancer had been confirmed …. Squamous Cell Carcinoma. and I learned that Squamous Cell was also known as “swimming cell” carcinoma.
Surgery was scheduled for the following Wednesday, December 4, 1996. I went to the Operating Room at 10 AM, sure that I was going to die on the table. I awoke in the ICU about Midnight. My friends told me later that the surgeon called them at home about 9 PM to tell them all was ok. I was heartbroken when the nurse, whom I had scared to death when I reached out and touched her, told me that they had to take my larynx, but that I was doing very well. After seven days the nurses got tired of having to hunt me down to do their vital checks and they kicked me out of the hospital. My divorce was final the next day.
On Christmas Eve, I met with the speech pathologist, who ordered my Servox and started my practice session with a Servox that belonged to the Hospital. After two hours, she kicked me out of her office laughingly telling me that I would do fine with the Servox. I could “speak” again.
Radiation therapy came between the surgery for the total laryngectomy and the TEP, which they did six months later. A week after that, I met with another SLP and he fitted me for a couple of interchangeable prostheses to see how I would do with them. I had trouble getting them to install correctly. He soon inserted the dreaded Provox 1 prosthetic. I say dreaded simply because of the way they had to use a pull wire to draw it into Position. (I love the Provox II much more!) It is so easy to install. Again I had no problems being taught to use it.
I had always used my voice to make my living. I did Business-to-Business telemarketing selling everything from hacksaw blades, electrical tape, nuts and bolts to shares in oil wells. I worked as a Dee Jay in radio (Gospel, Country, and Adult Contemporary/Light Rock). I also worked in topless bars.
Did I smoke? Heck, yes, and am embarrassed to say I still do. Addiction to nicotine is a hard thing to break. I have been a smoker for 40 years. I admire those like my Dad who were able to lay them down and walk away. I am not as strong, I guess. I tell people that all the time. Nicotine, (I am told is exponentially more addictive than heroin). I believe it! It is a “Jones” I have tried to shake and break many times.
I have suffered deep dark periods of depression. I even had myself committed after I found myself looking for an escape route from feeling that all my self worth and pride had been taken from me. I have essentially no thyroid function and I have been on virtually every antidepressant on the market. My depression is not cured, but controlled. An additional diagnosis of Bi-Polar Disorder has now been added to my plate.
I have learned through therapy that the mind loves to play games. It runs scenarios over and over. Often worst case scenarios loom largest. The way I have found to survive each day is simple:
1. Each day, I thank my Source (Higher Power) for being a survivor.
2. In my way, I do whatever I can to help someone else…not just cancer survivors.
3. I tell myself I am a survivor, and I don’t worry about what MAY be, but what IS.
This is how I try to live my life, Day to Day. Am I always successful? No, so we start all over. You never know what is happening next so you just put one foot in front of the other, and live your life as best as you can. Maintain your relationships and thank those who support you. Have fun! Live, Laugh and Love.
FINDING YOUR OWN NICHE by Pat Sanders
I remember someone asking years ago what I would do in retirement and suggesting that I find a charity to do volunteer work. I answered that having been in sales for years, any charity would want me to sell something or do fund raising and, if I were going to do that, I might as well keep working and get paid for it. HA! Fate was sitting there smiling, as in, "Just you wait and see!"
Sometimes you don’t choose what you are going to do; the task finds you. For you who have done volunteer work with your own civic group, hospital, church, or school, it may have come as a shock to find that having a laryngectomy took away the “work” you were doing, the friends you worked with, and the purpose you worked for. That doesn’t mean your volunteer life is over but it may be that you will need to shift gears. You might be able to go back to what you were doing or something similar to that, but you may move to another more specialized area relating to what has happened in your life and what you have learned about it.
There are only 24 hours in a day so do what you are good at and what you enjoy or what makes you feel good about the people you help and yourself. If you are one of those who start your day with WebWhispers, then start with printing out something you can take to your local club meeting to discuss or inform. Share. Write a question in or answer someone else’s question with your own experience.
If you are an optimist, have recovered well, have educated yourself on the rehabilitation process, and have a voice that is clearly understandable, no matter what method, then you may be the perfect person to call on new laryngectomees or do pre-surgery counseling. The best way to go about this is let your doctor or SLP know that you are available. Some doctors don’t want this done and sometimes you may not be the right person to call on a particular patient so this should be done through the doctor’s office. In some cases, the new patient contacts you, is referred by ACS or a friend, and that is fine, but otherwise you go through the doctor’s office. Why? An example of a call that requires some foreknowledge would be a patient who had very extensive surgery, a partial glossectomy (lost part of the tongue) and has a PEG tube for feeding that is expected to remain in for a while. A friend may say…go see this guy but you need some facts. So, add common sense to the qualifications needed for hospital visitations and don’t expect the patient to have the same experiences you have had with talking, eating, or recovery time. When you leave the room and the caregiver follows you out to say thank you and give you a hug, you know you have helped by just being there.
If you love to work with children and teens you might find an outlet for yourself in speaking to school kids about what “happened” to you. If you are angry, this is one place where you can use it because it doesn’t hurt to tell the kids you are angry with the cigarette companies who lied to you and angry at yourself for keeping on smoking when you really knew that “coffin nails” were not good for you. By letting them hear or see what the results are, maybe you will prevent some from starting to smoke or get others to stop. For those who volunteer for this, there is nothing more satisfying than to have a kid come up to you later and say they will always remember what you said and never start smoking. There is a lot of information available to help you with this. There is literature to pass out from a number of organizations and online groups where you can learn all you need or want to know about it. The anti-tobacco sites would love to have you join in with their groups.
Working with your local support group is a great place to start volunteering and there is something for everyone to do here. Start by just attending the local group regularly. If there is none in your area, you might want to start one and the IAL has suggestions on how to do that.
No one can do it all. We each have qualifications that make us better at one thing than we are at another. My friend and co-worker Murray Allan is an example of someone who wears many hats, as I do. He holds office in his local club, is President of WebWhispers, is on the board of the IAL, runs some meetings, attends others, counsels with patients prior to laryngectomy and calls on new larys in the hospital. He contributes to newsletters and speaks to groups. I’m probably missing some things but Murray is typical of some of us around the world who have made volunteerism for laryngectomees a full time job. You don’t have to go that far, just find your niche and do what you do well.
Some of the areas you might choose are:
Hold office in your local club or simply attend the meetings.
Start or manage a loan closet for your local area.
Contribute to getting a newsletter written or mailed.
Visit and help new laryngectomee patients.
Speak to adult groups about throat cancer.
Visit schools with anti-tobacco programs.
Join WebWhispers, a laryngectomee online support group.
Attend the IAL and VI and bring back information.
Be a delegate or hold office in the IAL.
Volunteer for projects with American Cancer Society.
Get into the political aspects of help for laryngectomees.
Be a good example to others for laryngectomee rehabilitation.
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