I don't do a lot of posting these days but would like to add my couple of cents worth as an overall expression of gratitude to many concerning my case.

I have read many posts on this site over the past 4 plus years since I signed up and must say from a diagnosis standpoint I feel very fortunate. Perhaps it is due to the obviously excellent staff at Emory University Hospital here in Atlanta where my "trip through the tunnel" began in April 2006. My only symptom of the right side base of tongue cancer was a lump on the right side of my neck, just below my right ear. The ENT who examined me at Emory spent maybe 5 minutes of poking, pressing and scoping my throat area when she announced that she felt near certain that I had Squamous Cell base of tongue cancer. She then "did the necessary" to get me on to a CT scan and fine needle biopsy the same afternoon. This was followed with a PET scan the following Monday and then a follow-up appointment with her on Thursday. The Thursday meeting was the "eye opener" when she announced that her suspicions of just a few days earlier had been confirmed with my follow-up tests.

Having had no previous exposure to oral cancer under any other circumstances up to that 59 year point in my life I guess I felt as though such a disease as mine was easily diagnosed. Wow! Just how wrong I was after reading and hearing of so many others and their ordeals with diagnosis of the disease now after 4 years.

Regarding the earlier discussed caregiver issues, I would like to openly thank and forever praise my wife for all she did. Even with never having had any medical or caregiver training of any type (always a banker) I don't believe I could have personally hired a better person as a caregiver. The thought of never being with me for every appointment during the ordeal never entered her mind. I even feel guilty at times when I think back at how I felt as though she was "smothering" me with love and kindness during the entire ordeal. She even insisted on doing all of my PEG feedings as I was so totally "grossed" out by the thought of such an unnatural act of pouring something directly into my own stomach. Just the thought of my doing that brought me to my knees! I even made the disastrous mistake of coughing on one occasion when she was feeding me and had my tube uncapped. What a mess that made all over her! She took it all in stride and never missed a beat.

I too hope for only the best outcome for MD. One thing is for sure, a disease such as oral cancer can easily reduce all men or women, regardless of position in life, to the lowest known common denominator!

Bill Dozier

Mr. Dozier,

Thank you for your two cents and all of your inspiring stories! I am gearing up for surgery in just a short week and this final stretch has been so very tough. I am a huge MD fan because I grew up watching his movies when I was not supposed to, but I always found him to be the " Mans Man!". So I keep him in mind as I go through this every night, fighting for sleep, fighting to use the restroom and lashing out at my fiance, fighting just to eat anything. But I keep telling myself I have to much to do, It is way to early to check out and give up.

It sucks so friggin bad and I am at that lowest demominator,been to the breaking point several times and still havent even gotten to the operation table yet. I stopped taking the morhpine so I could pee normal again and number 2, I just want to try and tough it out with lidocaine and mouthwashes til I get there. The cancer seems to be becoming aggressive now,causing more tissue damage and sore on the side of tongue where it seems to be forming a deep hole. I go to the doctor for the last time at the ENT before surgery thursday, hopefully its still good news and surgery is on as planned. This thing is just killing me and I have been close to cutting it out several times myself, I just keep fighting the good fight my friends. Any suggestions or opinions on surgery experience and what to expect is welcomed, I love all of you like family, thank you for being there for me and my family.

Nathan

One Love,and Cheers!

As a caregiver, I was also taken back by her comments. It honestly never occurred to me to not go to appts, be with my husband at chemo,etc.
I recognize that sometimes you can't be there because of work, or kids or your own health needs but because it's hard to see the other person like that??? Yeah, it sure is but I figure it must be harder to be the one with the cancer in your body and anything I can do to ease his situation---I'm there.

Nate, don't feel you need to tough this out. There have been studies done that show having assistance with pain helps people heal faster. As someone who has worked with substance abuse patients for many years,I'm very cautious about painkillers. But, this is not a situation where you need to tough it out. If the meds are giving you unpleasant side effects, talk to your MD. There is a wide variety out there that can help. You might ask for a long acting drug like methadone to help with some of the side effects or just a lower dose of the morphine.

Nate,

I can't help you much when it comes to the surgery option. I did not have to endure that other than the right side neck dissection to remove 11 lymph nodes following my chemo and radiation. My doc wanted to avoid base of tongue surgery if at all possible due to potential speech deformity that could result.

Good luck with your battle and just take what comes one day at a time and then be thankful the next day that the last one has come and gone! Good luck!

Bill Dozier

This forum gets Googled sometimes, and this is one of them. I have for the first time used my ability to censor some of the posts on this forum. I have taken out proper names that might bring particular attention to this thread. We all know what the subject of the thread is at this point, so to us this shouldn't be a big thing other than I have crossed a line that I never have before in a decade.

Re; the people we are talking about; I would suggest that as we are all aware the media seldom gets the story right, but they want to get it out first, right or wrong. We all have very strong feelings about this subject of oral cancer, and about how our life companions journey with us. I would also suggest that what has been suggested by the media is not accurate on this point. That except for the first week the people have been together in this family as well. Some of us, me included, just don't like people around us when we are sick, and ask or drive them away while we get through what we have to get through. Since everyone is speculating here, let me speculate that this is common even among the famous, at least right in the beginning, when a media circus might be surrounding the situation.

If you will all forgive me the editing of proper names, I would appreciate it. Keep on expressing yourselves as you see fit, but please keep any proper names out of this particular thread. Google, Bing and others catalog more than we know sometimes. I am not doing anything because of all of you, but because of my situation, which I can not compromise right now. More, if we are going to say anything unkind, which may pass in any discussion, especially one in which we do not have all the facts, that there are no proper names associated with that, at least on this thread, on this board.

Last - the NCCN guidelines, especially at an institution that helps to set them, are for radiation and chemo to the base of tongue in cases where surgery might compromise long term quality of life issues for the patient. Speculating that someone might at a major institution force their doctors to use a treatment modality based on their personal vanity, is also believing that a doctor would actually do that, and that the media got the story right. Personally at a multidisciplinary treatment center I would speculate that could never pass muster with a group of doctors agreeing to it. This is a life and death issue, and no doctor is going to trade vanity for an opportunity at life. I also do not think that his person would choose that.

Just because the press says something doesn't mean that we can trust them to get it right especially when the story is something involving celebrity or other things that can sell papers and magazines.

Thank you, Brian. You are a true and compassionate leader.

edit accepted and understood

I'm glad Brian took this action. The last thing MD or his family needs is to read negative comments from OCF taken out of context by a google type search.
As for not getting surgery for Stage IV, OCF is full of Stage IV base of throat cancer patients for whom radiation and chemo did the trick. Even though my BOT came back, I am so grateful for the one year remission when I could eat, drink and talk. Surgery remains an option if the rad/chemo does not work. I hope MD never has to have surgery. IMO, his reported decision makes perfect sense and has nothing to do with vanity.

Thank you, Brian and Charm, for clarifying my misunderstanding of treatment for BOT cancer. Also, I have to remind myself that as individuals, we all handle events in our lives differently. There are many paths toward achieving the same goal. I sincerely wish he and his family well, and that he moves through treatment with few or no issues. My apologies to everyone I have offended with my reference to vanity. Going now to dine on a huge slice of humble pie.

Anita

The web is the wild west these days and people can say anything, true or not, and little of it goes uncataloged by web bots that wander around the Internet. I want everyone to express themselves freely, since few opinions are completely without merit. But in this case, who we are talking about is something that others might guess about but not know for sure, and that is all I care about. We would like to believe that OCF members and the organization itself are/is benevolent, which I think is true, but the way people are taking things out of context these days in a media feeding frenzy, what wouldn't be good is a quote off these boards trashing someone for doing something.