One Year Since Cancer Diagnosis

A year ago this week I was informed I had larynx cancer.  The following week, at the direction of my ENT, I began 36 radiation treatments.  The radiation, unfortunately, didn't help.  Vocal cords became immovable making breathing a little interesting and on 9-11-08 (yes, that date) I had a full laryngectomy. 

 Now a little over 4 months from the surgery, except for taking Aciphex for acid reflux, and something for potential allergies, I am medicine free and I have to admit pain free.  My weight is back, and my color is back.

I am missing the front portion of my throat where the larynx was removed, and there is that gaping hole the size of a quarter where my adams apple used to be.  I put an adhesive patch and push button over the hole that conceals a voice prosthesis that allows me to speak, somewhat, when I push the button.  My nose no longer works and it occasionally drips. Something to learn to cope with because you can't blow your nose anymore.  I have lost all taste and smell...nothing to do about that.  It takes an extra hour each morning cleaning the hole which is called a "stoma" and attaching the adhesive patch and button.  They are 24 hour throwaways...if you wear them every day that's an additional $340.00 a month.  Not a horrible cost for being able to make sound and sometimes speech. It takes an extra hour each night preparing for bed as everything has to be removed and then the stoma cleaned.  And can't forget about the three or four coughs each hour of the day.  Did I mention that all your breathing and coughing and mucus expulsion comes out the stoma.  They say that mucus production diminishes on some laryngectomees but it hasn't much with me. 

My employer hung on for a good while but because verbal communication was a big part of my job, they canned me on 12-31 when they saw that my speech was, well, not very good.  Can't really blame them...they hung in there all last year and actually even paid me during the 9 month absence. 

Purpose of this 1 year anniversarry email?  99 out of a 100 laryngectomy patients were smokers.  Do you hear that?  I am a college educated somewhat intlelligent individual that allowed the addiction of nicotine alter my thought process.  Not me...will not happen to me.....

Every morning when I am cleaning that God awful hole in my throat or I have to get up and move quickly to the men's room during one of my infrequent ventures into the public so I can cough out mucus from the hole in my throat, I pray to God that if only smokers could see me...feel my humiliation when small kids point at me, the difficulty in getting from one day to the next......you know, cancer kills so many folks each and every year and many and most of those poor souls did nothing to cause it except to be alive.  This is one cancer that can be prevented by almost 100% by changing lifestyle habits.   

I am convinced that people like me are left alive to show the damage, to show how very much your life can be changed so much, with none of it being good.  Smokers, grit your teeth and realize it is the nicotine that keeps you convincing yourself to smoke...just google laryngectomees and take a real gross look at what you can become if you continue to smoke. 

Alot of folks will say I'm preaching.  That's why I was left alive...so you can see how nasty this is...and how it could happen to you. This is not a glamorous cigarette ad.  No, I'm their worst nightmare...because I am what you really turn into......I am real.  And smoking caused this.  And it caused it in the other 18 folks with holes in their necks in my local support group...yep, you got it, all were smokers.  Hello?????

It amazes me that I was that weak...that I am now a victim of my own addiction. 

Godspeed to each and everyone that reads this.  And if there's one smoker that "lays em down" after reading this, then I'll know why I was left alive with this difficult lifestyle to maintain for the remainder of my life.

i am new to this a bit shy. just scared and depressed all the time . 8 major operations in 15 months  like to find out whats normal or not

Wow! What a powerful message.  I am a counselor in a public school;we do programs all of the time for kids about smoking, drinking, etc.  I am not sure anything "hits" them.  My husband just finished treatment for head and neck cancer.  Thank God he has not had to have surgery.  He never smoked or chewed or dipped a day in his 62 years.  S000  - you never know when the dreaded disease will hit.  I will think about you and your message.  God Bless you!!  Cheryl   Oklahoma City

I have a beautiful, wonderful brother with larynax cancer having had a total laryngectomy and the stoma all the horrific struggles it entails.  I am not a smoker and am glad I never started.  He was a smoker from an early age.  I however don't think that he or people like him should be used as "poster children" for the cause against smoking in magazines, on TV and at the beginning of movies.  It is hard enough on the people that have to deal with all the daily realities and humiliations that go along with this condition.  Sure he smoked which contributed to developing this cancer, which he realizes.  But should all those ads sit out there for people to view over and over and over as he sits or stands there with people with the outcome visible on his body?  Sure it MAY be a deterrent to a few (but doubtful), this doesn't happen to everyone that smokes and almost EVERYONE has denial that it could possibly happen to them anyhow.  Why don't we bombard the public with ads displaying the horrors (which are many) of the real life horrible details of someone with cirrhosis of the liver, or liver cancer or hepatitis and how pitiful their bodies wll begin to look, as a result of excess or prolonged alcohol consumption.      Also, how about those obese people.  Lets constantly replay  them trying to squeeze into clothing and trying to fit in an airplane seat.  How about showing the diabetes that can develope among these people and show their limbs gradually being amputated one by one and how the gangrene will look eating away at their bodies. Or prehaps how the obese may look and function after a severe heart attack, if they live through the heart attack.  I am just saying lots of things happen to us that we may one way or another contribute to or may not contribute to but it is hard enough on the person and their families when it happens without displaying these horrors "with a message of see how pitiful you may get to be" at the expense of the ones that have a hard enough time living it.  There are other ways of getting points across, if not then lets just include all diseases that you may in some way contribute to getting and display all the results for all to see!!!!!!!!!    Somehow human kindness and compassion should come into consideration!

 

 

 

Hopeful Sister, I understand completely what you are saying, and I have to admit I agreed with exactly everything you said until after my surgery, when I got my exposure to real data from the American Cancer Society concerning this type of cancer, and then it hit home when going to my support group and finding everyone in the group were smokers.  Every now and then a person will end up with this type of head and neck cancer who wasn't a smoker...but the statistics show its the exception when that happens.  As far as the American Cancer Society and their stance, and its simple.  New Larynx cancer cases in the United States in 2008 represented exactly 1% of all reported new cancer cases.  But of all the cancers that the human body can have, this is one of the only ones that can be prevented by lifestyle choices for the vast majority.  Look, I was a Public Information Officer who frequently spoke publicly for hours on ends for days and days...was there damage done to my vocal cords which may have contributed to my cancer...I can almost say without a doubt there was.  But look, the last 10 years I smoked I was a closet smoker, because professionally you were "inferior" if you smoked.  So I didn't even smoke that much.  But I smoked for forty years..and I liked drinking a few beers a couple of times a week. The real time data is real...if you smoke you increase your chances to get head and neck cancer...if you add alcohol with it, you increase the chances by 200%.  And we are the lucky ones that got head and neck cancer...we got to live.  The poor smokers who smoked just like us..but instead of getting head and neck cancer got lung cancer, which is much more probable to occur, the vast majority of them are dead....dead.  So while you get offended when you see the commercial at the theatre, it's not being shown to embarass him or any of us...it's not even for the head and neck cancers, because remember, we represent just 1% of annually reported cases.  It's for all those dead souls out there that smoked their way to their graves from lung cancer.  The AMA and the American Cancer Society are just trying to shock people into the reality of what can happen if you smoke, and someone left alive with a gaping ugly hole in their throat gets everyone's attention, like it or not. And you are so right about all the other things you said about the overeaters and all the other stuff.  But I just wish, just wish someone somewhere could have slapped some sense into me before this..its so depressing to get up each morning and look at yourself in the mirror, to only have a memory of what you used to sound like, of not being normal anymore. First time in my life I don't have an urge to smoke...all it takes is one look in the mirror.  And please don't take any of my comments as being harsh to you, because they are not and that was not my intent.  None of us can turn the clock back, although I sure would if I could.  And you know what? It would be a no-brainer...I wouldn't smoke..period.

I hope you take my comments in the positive way in which they were intended.  Good luck and Godspeed to you both in dealing with this.

 Mike Smith 9-11-08       

 

On 3/24/2009 Mike1sc wrote:

Hopeful Sister, I understand completely what you are saying, and I have to admit I agreed with exactly everything you said until after my surgery, when I got my exposure to real data from the American Cancer Society concerning this type of cancer, and then it hit home when going to my support group and finding everyone in the group were smokers.  Every now and then a person will end up with this type of head and neck cancer who wasn't a smoker...but the statistics show its the exception when that happens.  As far as the American Cancer Society and their stance, and its simple.  New Larynx cancer cases in the United States in 2008 represented exactly 1% of all reported new cancer cases.  But of all the cancers that the human body can have, this is one of the only ones that can be prevented by lifestyle choices for the vast majority.  Look, I was a Public Information Officer who frequently spoke publicly for hours on ends for days and days...was there damage done to my vocal cords which may have contributed to my cancer...I can almost say without a doubt there was.  But look, the last 10 years I smoked I was a closet smoker, because professionally you were "inferior" if you smoked.  So I didn't even smoke that much.  But I smoked for forty years..and I liked drinking a few beers a couple of times a week. The real time data is real...if you smoke you increase your chances to get head and neck cancer...if you add alcohol with it, you increase the chances by 200%.  And we are the lucky ones that got head and neck cancer...we got to live.  The poor smokers who smoked just like us..but instead of getting head and neck cancer got lung cancer, which is much more probable to occur, the vast majority of them are dead....dead.  So while you get offended when you see the commercial at the theatre, it's not being shown to embarass him or any of us...it's not even for the head and neck cancers, because remember, we represent just 1% of annually reported cases.  It's for all those dead souls out there that smoked their way to their graves from lung cancer.  The AMA and the American Cancer Society are just trying to shock people into the reality of what can happen if you smoke, and someone left alive with a gaping ugly hole in their throat gets everyone's attention, like it or not. And you are so right about all the other things you said about the overeaters and all the other stuff.  But I just wish, just wish someone somewhere could have slapped some sense into me before this..its so depressing to get up each morning and look at yourself in the mirror, to only have a memory of what you used to sound like, of not being normal anymore. First time in my life I don't have an urge to smoke...all it takes is one look in the mirror.  And please don't take any of my comments as being harsh to you, because they are not and that was not my intent.  None of us can turn the clock back, although I sure would if I could.  And you know what? It would be a no-brainer...I wouldn't smoke..period.

I hope you take my comments in the positive way in which they were intended.  Good luck and Godspeed to you both in dealing with this.

 Mike Smith 9-11-08       

Hello Mike Smith,

I am new to this website and I just read your email above. My father died at the age of 79 from throat cancer. He smoked until age 60. He was a WW2 vet who always lived as if there was no tomorrow. He survived the depression and the war but not the partying, drinking, smoking, and dancing on tables. But he was hell-bent on making up for all those years he felt deprived of living....It was a sad day when the party ended!! 

Thank you for your heartfelt  comments.

Ellie Stoddard 5-9-09 

 

Thank you for those comments Ellie....

 Mike Smith

9-11-08

Hi Mike, I wrote to you on throat cancer board , so when you check out this site , maybe you could go back to the other one to see what i wrote.  I hope you are doing well. Take care and GOD BLESS

been a total lary since dec/07 38 radition treatments 10 chemo ended in may/08 cancer returned in oct/08 once again ear to ear  i recalll waiting up thinking not again am im not going thru this then the leaking began aother flap from the other forearm 2 weeks later a other flap from the chest still leaking give me a damm guna week week a other flapfrom the other sideof the chest 3 months not swallowing,and not looking in a mirror thing the size of a football on my neck docs says no singer valve for you too much tissue damage thats ok by me talk is over rated any ways as long as i can eat home made soup the weigh  of all those flaps my stoma collasping as soon as i take my tube out wife looking at me like whats wrong with you i grab my tube and shove it in every month it seens i begin leaking so back to 3D4 nose feed time keep it  dry for a leak it stops wife is a pinay so GREAT SOUPS living in a upper part of town still able to keep my yard better than my neighbors in their early 30s on both sideswrote one then a note yesterday asking him to pick up after his dogso quit feeling sorry for ya self man up i look back on my life knowing the hardest thing i ever did was helping my father up when he fell and thru lung cancer he wasnt able to pull his self up seeing a man that was so strong  not even being able to get up i remember i felt like kicking him and telling him to get up as i was pulling him up i said to him you didnt need my help he said oh i guess i didnt was last time i seen him so live every day and hold those close to you as each day is a blessing and thanks to Doctor H.Seikaly and the staff of 3D4 at the University of Alberta Hospital

Hi Mike,

It's me again. I have been researching all types of head and neck cancers and I am curious to know if any of the other 23 people in your support group were Viet Nam vets who were exposed to Agent Orange. I had 2 employees who were vets that were diagnosed with laryngeal cancer. The Veteran's Admin denies their claims.

Hope you are getting out and enjoying every precious day.

Ellie