Hello, everyone.

My tumor was removed about two years ago. The surgeons removed the floor of my mouth, along with all my bottom teeth. Of course, with the radiation treatments, implants are now out of the question. When the plastic surgeon replaced the floor of my mouth, he left it completely flat. Then dental oncologist at MDAnderson, here in Houston, tried for months to make a lower denture that would adhere, but no luck. During the period of letting the skin graft grow, I had to stop all nicotine use, which I did. During my visits to my ENT doctor, she told me that alcohol had as much to do with cancer as did my cigs.

Here's the "crazy" part: About six or seven months after my skin graft, I smoked a cigarette....then another....then another. Now I'm back to smoking over a pack a day. I've also started drinking again.

I know that I have this anger inside me: I'm mad at the "cancer gods", the doctors, the world. I don't like the way the treatment has left me. I have severe dry mouth and I make my living as a dispatcher! I can't talk for 5 minutes without having to take a sip of water. The damned water goes everywhere with me! I don't have any bottom teeth so chewing is not an option. I'm sick and tired of having to "eat" soupy stuff.

Thanks for letting me vent.
Sandy

hi Sandy,

welcome to OCF.

a book on commications i just read says that when folks are venting, they don't really want suggestions as to how to improve their lot. they just want someone to listen. i hear you clearly.

best wishes, venting is good.
cu,
larryb

Thanks for your reply and insight. You're right. I know how to improve my lot....stop drinking and smoking. The only thing is, I feel that I've lost my QUALITY of life, even though I still have life. I'm hoping that one day, I'll be satisfied that I am still alive. I guess I'm just not there yet.

Again, thank you for listening.
Sandy

Hi Sandy,
I hear what you saying. People tell me that I should focus on what may happen in the future. But, how can I not when I know how this cancer works and I know that I will constantly be looking over my shoulder to see if its back. To me that is a real burdon. I'm not the same anymore after my surgery. I don't see how my husband will ever be interested in kissing me again. I talk funny and I can't taste my food. Maybe someday I too will be satisfied that I am still alive. Kelli Keller

You know, I'm not looking over my shoulder anymore. If it comes back, it comes back. I've even stopped going to my ENT since I don't have any insurance (of course I can't afford it now) and I sure can't afford the tests they want to run. The speech impediment, loss of taste, limitation to soft,soupy foods, the dry mouth, blah blah blah is something I'll have to live with the rest of my life. I'm a single person so there's no children in my picture and my partner finally had enough of my drinking and moved out. I will forever be gratefull that she stayed with me throughout my ordeal. I'm hoping one day I'll wake up and say, "gee, what a great day".

SandyJo,

When you wake up tomorrow morning, spend the first few minutes thinking about what you do have. Listen for the birds, notice the sun shining, notice the absence of gunshots...These are examples of things we take for granted that others accept as life.

Email some people on this forum and hear of how they saw their loved ones battle this disease to the last breath. Or, maybe chat with a few people on this forum that know for certain, that there is no more cure available to them, that there are literally days left to spend with their families.

Spend the last days with a terminal parent discussing life and death as you see them whither away until their physical body gives out.

You sound like you are so unhappy with the way things are yet you do not seem to want to do anything about it. If you are not willing to do whatever it takes to enjoy life and live life to the fullest, what do you expect from others?

I hope tomorrow you wake up and say, "gee, what a great day". You have been blessed with two great years yet you have wasted most if not all of those days, based on your post. Carpe Diem, sieze the day, for it is yours to do with as you choose.

Ed

Sandy,

I'm not going to blow sunshine up your you-know-what. Having this disease sucks. Going through the treatment for this disease sucks. As far as I'm concerned, anyone who has stared the "beast" in the mouth can have as many bad days as they need to cope with what has happened to them. I just hope when you do have a good day, you allow yourself to enjoy it. I'm hoping that day comes soon for you.

Hang in there...

-Brett

Sandy
I know you are in a bad place right now, just know we all have been there, and some are still dealing with bad stuff now. I just want you to know people here do care. Lot of Love your way. You will be in my prayers

Joan, thank you. After reading a lot of the postings here, I'm really not in a bad place. I'm lucky enough to still have my job and, more or less, my health. Thank you again, for your thoughts and prayers.

Sandy

Thanks, Brett, for your kind words. I sure do have my "pity pot" days and thankfully, they're only occassional. One of the reasons I came to this site is because only those of us who've gone through this can truly appreaciate what a struggle it is. My two brothers, both of them out of my state, try to understand and they do get on me about my smoking and drinking. I guess I've convinced myself that cancer is a crap shoot and people who don't smoke or drink have gotten cancers much worse than mine.

When I was going through MD Anderson for my dental oncologist, I saw many people, so very many people, who were hit with all kinds of oral cancers and I do remember feeling "fortunate".

Sandy

Sandy,

I've thought long and hard about replying to your post. On one hand, I want to tell you that it is a terrible shame that you are wasting the second chance you have been given. I lost my 29 year old daughter last year and I really want to rant at you and tell you how lucky you are to still be alive and also tell you how stupid you are to be smoking and drinking again. My entire family would give anything to have Heather back, especially her husband and her 7 year old daughter.

On the other hand, even though I watched my daughter go through this hell, I still can't imagine how I would feel if I was the victim instead of the caregiver. I don't know how I would deal with the issues you have to deal with daily. Many, many people have to deal with the dry mouth, but it must be terribly hard to have no bottom teeth, especially if there is little hope that you can get dentures or implants. With all the advances that have been made in medicine, though, there is always hope that you will be able to get something in the future.

I guess what I want to do is yell at you to wake up and be grateful you are still alive and, at the same time, express my sympathy that you have had such a hard time dealing with this terrible disease.

If your finances are in poor shape, maybe you can't, but I think it would do you a world of good to attend the OCF gathering in Las Vegas. I think that meeting other people that have some of the same problems would be therapeutic for you. Hope to see you there.


Rainbows & hugs,
Rosie

Rosie, what a nice post. I'm sorry about your daughter. I realize that I'm lucky to still have my life and reading the many kind messages I've found on this site has given me a feeling of "accept it and get on with your life".

Thank you again.
Sandy

Sandy, I agree that getting cancer is a crap shoot. Unfortunately for you and I, and the rest of us, the dice didn't go our way. I'm also an M. D. Anderson "graduate." Since my treatment ended in November of 2003, not all of my lifestyle choices have been in my best medical interests either. Just remember that alcohol and tobacco have a synergistic relationship in terms of carcenogenisis. I hope that if nothing else, you can find a way to lose the tobacco habit. As a former cigarette smoker, I can say that in all seriousness and sympathy. And now I've said it.

-Brett

Sandy,

I'm glad you thought mine was a "nice post". I don't know if that is how I would term it! I really don't have any right to tell you to shape up, but sometimes my grief just takes hold and I have to let it out. I truly do hope you can get on with your life and I think it would be great if you could join us in Vegas.

I know it must be terribly hard to break a nicotine habit. The rest of my family still smokes and drinks, even though they watched their daughter/sister/wife die from this cancer. The really sad part is that Heather didn't smoke or drink. Sometimes I think they can't find the gumption to quit partly because they feel guilty that they are the ones with the bad habits, but she was the one that suffered.
I wish you well. And I wish you the strength to quit.

Rainbows & hugs,
Rosie

Sandy,
I am one of those who ot this cancer without ever having smoked a cigarette, or drunk excessively. I don't know if I would feel worse if I had. I know I hate it when people say "Oh, but you don't smoke" when they hear that I have oral cancer. What difference does it make how we got it? Most alcoholics and smokers do not get cancer.

If you can accept it and get on with your life, you have won a major battle. Some days will still be better than others. My Feeling today is: OK, I have cancer, how can I best live with it. For me, today, it means doing my best to stay as healthy I can while recovering from radiation, trying not waste my days worrying about recurrence. The worst feeling is that despair when it seems there is nothing I can do that will make a difference. You'll have to decide for yourself what is the best you can do.

Good luck,
Leena

I am not so sure that your statment "Most alcoholics and smokers do not get cancer" is factual.

"The 1982 Surgeon General's Report stated that "Cigarette smoking is the major single cause of cancer mortality in the United States." This statement is as true today as it was in 1982. Because cigarette smoking and tobacco use is an acquired behavior, one that the individual chooses to do, smoking is the most preventable cause of premature death in our society".

"Each year, a staggering 440,000 people die in the US from tobacco use. Nearly 1 of every 5 deaths is related to smoking. Cigarettes kill more Americans than alcohol, car accidents, suicide, AIDS, homicide, and illegal drugs combined.

Cigarette smoking accounts for at least 30% of all cancer deaths. It is a major cause of cancers of the lung, larynx (voice box), oral cavity, pharynx (throat), and esophagus, and is a contributing cause in the development of cancers of the bladder, pancreas, liver, uterine cervix, kidney, stomach, colon and rectum, and some leukemias.

About 87% of lung cancer deaths are caused by smoking. Lung cancer is the leading cause of cancer death among both men and women, and is one of the most difficult cancers to treat."
(Source ACS)
http://www.cancer.org/docroot/PED/content/PED_10_2X_Cigarette_Smoking_and_Cancer.asp

As far as alcoholism goes, I have met many in program that have died from it.

Here is a reference source for that subject:

http://www.vh.org/adult/patient/cancercenter/cancertips/drinking.html

also:

http://www.ncbi.nlm.nih.gov/entrez/...&list_uids=8339227&dopt=Abstract

In response to the original post - Yes!

Sandy4jo.

I am answering this here in response to this post and your other one I read today. I live my whole day (and night) with a water bottle with a sports top as part of me. I go through about 8 of them a day, 24 OZ each. Of course this makes for plenty of trips to the bathroom. I get up at lest 3-4 times a night to use the head. Doesn

OMG, Brian....maybe that's it. Grieve for the loss and be happy with what's left. I think I'll try to adopt that attitude. I need to "bury" the Sandy that could eat steak and shrimp and, oh the worst of all, cheese burgers. How I miss cheese burgers! My co-workers have all adapted to the new Sandy; now I just need to.
Thank you for your inspiration.

Gary, I hear what you're saying. I guess I just expected lung cancer, not oral cancer. Oh well, so much for expectations. hahah
Sandy

Leena, thank you for your reply. My dad has empasyma (sp?) and stopped smoking over 20 years ago. He has more problems than I do right now. I've never been a "healthy" person. I'm the original couch potato. I, too, feel there's nothing I can do. Whatever happens, happens. Since the surgery and radiation, I don't want to give up any more. I still enjoy my cigs and my brandy. Am I tempting fate? Probably. So be it.
Sandy

Rosie, sure you have a right to rant and rave at those of us still living and especially to someone like me that's temmpting the cancer gods. The only people left in my life are my dad and my two brothers. My partner of 12 years is still my friend. The only one in my house now is my Heinz 57 doggy and she loves me a whole bunch. I'd love to come to Vegas but I'm not sure I can afford it since I'm financially on my on right now.

I'll so into the site talking about the Vegas trip and see what the details are.

Thank you for your thoughts and prayers.

Thanks, Brett. I've been a smoker since I was 12 years old, "old habits die hard". Since my treatments I guess I just don't want to give up my so called pleasures.......smoking and drinking. I'm kind of hoping I'll get a grip with the communications from those that have "been there, done that". However, as Ed has pointed out, in the nicest way possible, nobody but me can make me want to live the rest of my life in a positive way.
Sandy

Ed, no offense taken. You are a very positive person and have a zest for life. Thank you for the inspiration you've given me.

Sandy

Brain, are you nuts? Jumping out of planes? Get on with yourself! haha
Sandy

Sandy, just remember that the recurrence rate for those who return to tobacco and alcohol after this is VERY high. Many studies have been published about this. The treatment options the next time around are very few, and the ones the doctors offer you will be grossly extensive. In relationship to the head and neck, think extensive salvage surgery, and removal of major body parts. For the rest of your body you can add dealing with second primary cancers in major organs that most often are fatal. This is not something to screw around with or take lightly. While I respect your right to do what ever you wish, perhaps you may need some conseling like I did. While mine was for a different reason, continueing self destructive behaviours even after a brush with death, might mean that talking it through with a professional is in order. It will take a major amount of will power and desire on your part to get past these desires. That has to come from within you, outsiders like us can only offer you support as you try, and a prod when you need it.

Sandy,

Brian gave you the full version to my Reader's Digest condensed version. Consider me the "good and honest person to say it to your face in hopes you will finally get it" to paraphrase Brian's statement. As many who know me will attest to, I will bend over backwards (with a little neck pain now) to help anyone in any way I can and provide unbelievable support to anyone that asks for it. Sometimes I am brutally honest but as Brian says, this is nothing to mess with.

Ed

Sandy,

Brian and Ed are telling it straight. Like me, they are concerned that you are not "getting it." That's not a judgement on your character, just concern for your emotional and physical well-being. (My late husband died from SCC; he had smoked the most expensive pipes and drank the most expensive Sherry and Irish Whiskey for 29 years. This past March, when he was told he had a few weeks to live, don't you bet he regretted every smoke and drink he'd ever had. We had only been married 22 months when he died. He had stopped smoking and drinking just after our marriage. Sadly, the damage to his body was already done.)

Brian rightly pointed out that change "has to come from within you, outsiders like us can only offer you support as you try, and a prod when you need it."

So, here's my prod because I care about what happens to you.

Christine

Sandy,
Although I wish that you would give up the smoking and drinking, I actually like the honesty of your attitude. People often expect us ( cancer survivors ) to walk around with pollyanna attitudes, being appreciative of every sunrise, sunset, and bird that sings. However that is not the reality of most of our daily lives. We grieve for that hamburger and those chocolate chip cookies that used to taste so good, our lost ability to jump on a plane or into a car at the last minute and to take off without lots of planning...no soup in a thermos or suitcase full of Boost. Believe me there are days when I am mighty pissed off about not being the guy that I used to be. As my friends scarf down hot dogs and snickers on the golf course, I pull out my little bottle of chocolate boost, and hope that I don't get too hungry before the round is over. But the good news is that I am playing golf! Like Brian, my water bottle is part of my right arm, and I pee more than a little kid ( or old geezer ). I hate it...I don't like it, I want my old life back!

Having said that, life is still pretty damn good. I was here to take my oldest child to college last year. I was here to drive my middle child to camp two weeks ago. I was here to take my youngest son to Hawaii last week where we rode bikes down from the 10,000 foot volcano and snuba dived together.

It's okay to be pissed off. We have earned the right, and besides, each of us handles our situations in our own ways. On the other hand, life does offer great possibilities. Since my recovery I have become involved with the most wonderful woman and life, though not like it used to be, is good.

Take care buddy,
Danny G.

Thanks, Danny. I really appreciate your response. I'm not totally ungratefull that I'm still alive and I do enjoy most days. I also enjoy brandy and cigs. Although most of us won't agree with me, I just think I've sacrificed enough with everything I've had to give up. I thank whatever power there is that, at least, I'm able to eat just about any kind of food that I can smush up enough to swallow. There are many who must live the rest of their lives on liquids.

Maybe not having children has something to do with my attitude. I only have my (2) brothers and they don't live in my state. Right now, my dog is my motivation and, for now, that's getting me through each day.

Sandy

Sandy
Everything in this life is a choice, you choose wrong and there is no going back, but choose right and life can be so good.. and this is not a dig at you.. if you read some of my past posts I refuse to give up my red wine..So just choose carefully...
sunshine.. love and hugs
Helen

Helen, sunshine is out (I'm a redhead) but love and hugs are definitly in.

Quality of life is very important to me; life without quality isn't. I've been fortunate to come through my cancer with no re-occurance yet. I see no reason to give up things I enjoy when I've been forced to give up so much from the surgery/rad.
Toothless, but still smushing and swallowing it down:
Sandy