Johanna,

I may not be as blunt as David and I commend him for his directness, but you really need to get your priorities straight. "Wondering if you should say no to all treatment" should not be an option. Dying from oral cancer is a HORRIBLE way to go. I have only been a member of this forum for about 2 years and we have lost quite a few wonderful people during that time. I can tell you if you want to have a reason to change your mind, click on the link below. You will read a blog written by a very strong mother who watched her lovely daughter die from oral cancer. She wrote this story to try to help others. You can be one of those that she helped.

http://www.oralcancerfoundation.org/cgi-bin/ultimatebb.cgi?/ubb/get_topic/f/14/t/000005.html#000000

I recently referred a writer for a dental magazine to Rosie in the hopes that she would share her daughter Heather's story with the dental profession and as a result, it would help increase the number of people benefiting from early detection. Despite how difficult it must have been to do so, Rosie seflessly relived the horror of Heather's courageous fight in order to help others.

I pray that you will decide that your life is worth fighting for and that you are succesful in this fight. You are in the right place for guidance here and you CANNOT afford to waste another minute.

Jerry

To Johanna from Amy in the Oz- just 2 questions- #1. are there things you still want to accomplish in your life and are they worth fighting this for? #2. Do you have your life in order, if in fact you decide not to fight?

Johanna,

I am also a base of tongue patient/survivor and completed the prescribed drill of radiation and chemo. I worried myself sick because of it taking my medical team 1 month to the day from the day of my diagnosis until my first day of radiation treatment. It just took that long with getting the preliminaries out of the way to get things going.

Go forward with your radiation and chemo treatment now! Do not wait any longer as that will resolve absolutely nothing! Yeah, I was scared of radiation too but I never even considered eventual death, slow and painfully, as an alternative course of action. Never thought twice about it. This is on top of the fact that I am self-employed with a one man (me) company with a business that requires a lot of oral communication with people. Imagine the momentary fear I had under those circumstances with no employer except for me to lean on, no disability plan to call on, no leave of absence benefit to utilize, no accrued paid vacation to grasp at and no other skills in my back pocket to fall back on in the event of a resulting speech impediment or chronic dry mouth to deal with. All of those things darted through my head but made no difference. I simply had too much to live for with having to raise a 10 year old grand son at 59 years of age. I went for the recommended cure and simply decided to deal with any residual consequences that came along one at a time.

I had the best of care givers in the form of my loving and concerned wife along with a stadium full of relatives cheering me on and praying like there was no tomorrow. Yes Johanna, I simply did what I knew it would take and shunned the idea of any "new age" type treatment forms offered for the most part by folks who probably did good to graduate high school, much less ever being able to add the initials of "M.D." at the end of their name.

Now. I personally am a little over 8 months out of treatment so I know where I am coming from although everyone weathers the "dark tunnel" a little bit differently than his neighbor. The radiation; yep, not pleasant but beats the hell out of the alternative, see above. Painful? Not really, at least in my case. I did feel just plain crappy most of the time but never in agonizing pain for any reason. Yes, you will lose your taste buds starting about the 2nd to 3rd week into treatment and it may take a year or longer to get them back. Sure beats that old alternative I mentioned earlier however.

Let's move next to the dry mouth issue. Yes, my docs advised me that the glands on my right side would be fried for good but they took great pains to protect those on my left side and did an impressive job. I do have trouble with dry mouth but it is not a constant thing. It comes and goes throughout most every day. Some even post here that their salivary function improves with passage of more time although I cannot really say I have experienced that yet. Even so, it is quite manageable and you will learn to adapt and compensate as you go along. You might need to get used to having a bottle of water with you most of the time, chew special gum by Biotene and to use some of the many other products from Biotene as well as other manufacturers. Again, you will learn to adapt and if you stick with this site you will pick up more tips than you ever wanted to know about!

Now, get moving on that treatment and just stick with this site and fire away with every posssible question you can think of.

Bill D.

Dear Group,
Thank you. I had been feeling all alone, overwhelmed and more depresssed than ever. I can see now that I have the support of people who have walked ahead of me, gone through the pain, and emerged to be able to encourage me to move forward, because everything might be all right. In addition to your comments and very direct reactions, I have found some direction and useful tips.

I'm still two weeks away from a biopsy of my chest, but I have an appointment with the Moffitt Center in Tampa for a consultation and my records have been received by MD Anderson Orlando and by the University of Texas Medical Center. I should be hearing from them this week.

Thank you. I am going to have more questions and I know I am still lost. Thank you for showing me enough light to make it through this day.

Yours,
Johanna

cancerous tumors at the base of the tongue and in right lymph nodes of my neck, suspicious spots in the mediastinum of my chest.

Johanna,

I went to Moffitt so if I can help you please e me anytime.

Johanna,

That's the spirit! You can do it. Fire away with the questions, anytime.

Jerry

Johanna! You have made my day!! Good for you!@! I can see that the initial horror has turned to determination to do the right thing for yourself. It sounds like you have taken all the right steps and will have opinions from the finest facilities available. You can trust their guidance, and then you will have a plan. It won't be like waking up to find that none of this is real, but it will be so comforting to KNOW what you are going to do about this awful problem. YAY!

Johanna, one foot in front of the other gets us all moving forward, and it doesn't hurt to ask for a little push every now and then Keep on moving forward. Amy in the Oz.

Johanna,

I see you have sat down to play the cards !
Well we are all on your side ..So any questions ..ask away and we will be here with you !!!!

PS I'll try to put in a good word to the "dealer"!!!!!!!

Sharlee

Hello Johanna. I wrote a lengthy post the other night because I was so worried for you and even a little angry. But the anger always comes from being afraid, and I was just afraid you were not going to give this a fight. I'm so glad to hear that strong woman voice. There are so many of them here and you have now joined them. My post never made it to the board because I absent- mindedly missed the post message part. Oops. I want to share this part though. During my treatment there was a young boy having treatment as well. I am not 100% sure his diagnosis and only cought a little bit of his mother explaining his situation to another lady. This young man had been through treatment when he was 6. I am pretty sure his mother said it was some type of tumor on the brain. He is now 9 and his cancer had returned and he was going through treatment again. This little boy and his family were very strong people. They were always positive and the little boy never complained. It was very obvious that his treatment was very tough on him and he handled like a warrior would. I have so much respect for that little boy and will always be greatful to him for the things he taught me. He had no idea that he changed my life. We all get scared with the Dx, and some of us get tired and frustrated along the way, but we are gifted one thing that most other creatures aren't and that is our ability to give and receive hope. The only thing that stops that is feeling sorry for ourselves and that little boy taught me to never feel sorry for myself again. He also taught me that someone may be watching and be needing hope, so with a smile I try to pass along the hope he gave me. I hope everyone that reads this post will add this family to their prayer list, and Johanna I will add you to mine. The rest of you are already on it. Good luck Johanna. :-) Lee