Didn't mean to sound so harsh....if I could have spoken the comment instead of posting it to a message board, you would have heard less in my voice than what you read as typed words. No matter at what level of issues we are all left with, you can always tell a winner by how well they play the hand they are dealt. I am always inspired by how some who have much greater issues than I, deal everyday with things and go on with their lives. Dealing with these kind of "heros' everyday, keeps my own complaints in check. And believe me, that comes form the king of the whiners....

Wow, Brian, thanks for the compliment, you hit the nail on the head, we wish we were dealing with minor issues, like what we can and can`t eat, talking, etc.........we thought we were doing rather well, the entire wound had healed beautifully, we thought, until an eraser size hole appeared Friday night,by now, its the size of a quarter and deep..........really hoping it`s a sinus tract, cat with contrast scheduled for the 28th. Our plastic surgeon who has been most supportive moved all the way across the country, but i did catch up with him and will send pic today........for those who remember, last Sept,ENT doc told us if he couldn`t remove new tumor he would be dead in a couple months! So, we do have a plan in place for second opinion at Dana Farber. Our doc here in Maine, who is a coloretal surgeon { don`t ask, I know it`s the wrong end, and a very long story!} spoke with me yesterday and says it sounds like a fistula, but then he said biopsy, red alert!I`m going to let him know our plans for a second opinion if need be..........we sure as hell are far from giving up! I marvel at Packer`s dignity and strength..Being a nurse and feeling like in charge of everything, I tend to hover, which drives him crazy. So, that`s our update, 5 years, radiation, 7 surgeries and we still aren`t going to give up ! Dee

Dee & Packer,

You are both amazing. With everything you have been through and you're still going strong. I wish I had your strength. It hasn't even been a year yet for Heather and I get so angry sometimes when I see posts from people that had stage IV tumors and are now in remission and doing fine. I wonder why can't that be the case for Heather? Why is she having such a hard time? What did she do to deserve this?

Then I read the posts like this one with people complaining about dry mouth and other issues. I applaud Brian's comments, then I feel bad when I read bookaren's reply. Yes, I wish Heather only had these issues to deal with, but that doesn't minimize the issue for these other people. For bookaren and digtexas and others, dry mouth is a major issue and one not to be taken lightly.

I yo-yo back and forth between feeling angry because they are complaining about "trivial" issues while Heather and Packer and others are still fighting for their lives and then feeling ashamed because I would be willing to trade one of their lives for Heather's in a New York minute without even caring what the loss of their life would mean to their families.

Then I read about Packer's latest ordeal and I think things could be worse. Yes, Heather is still in a lot of pain and has a plethora of problems and her chances of beating this are about a million to one, but at least she was able to come home from the hospital. She does have a good day occasionally. Once in awhile, we can still get a smile from her. And she probably won't have to endure this torment for 5 years. I predict if we don't get a "miracle" within a few months, her suffering will be over. I truly don't think her body can take much more. And I don't think her spirit can either.

Packer, I'm sometimes not sure if I admire you for persevering as long as you have or if I pity you for having to endure yet another surgery. I'm not sure I would want Heather to have to fight this for 5 years. Maybe if there was a realistic hope that she could ultimately overcome it, I would. But to fight that long and maybe lose the battle anyway.......I just don't know if it's worth it. Not when she's in pain much of the time. She can't eat, can't talk, can't walk without help, can't use her arms hardly at all, can't go to the bathroom without help. Is this really living? It might be existing, but it's not living. There is no enjoyment in her life. I can't even get her to sit outside and get a little fresh air. She barely even smiles at her daughter anymore. She's sick after every chemo. She barely has time to start feeling better before it's time for another chemo and she's sick all over again.

Sorry for blathering on and on. I get to rambling and don't know when to stop. I'm sure I've offended more than one person. I actually almost deleted this a couple times, but decided not to. Maybe it might help one person deal with their own demons. And maybe not. It doesn't really matter. I needed to vent and I did. Take it or leave it. Be angry, be sad, be thankful, just be.

Rosie

Rosie, you most certainly did not offend me, and I cannot imagine that anyone who has followed Heather's story could fault you in any way. You are a remarkable woman and have the strength and committment of an entire group of average people. Your frustration and pain come through so clearly and I wish with all my heart I could help you and your daughter. Life is not fair, but sometimes it is more unfair than usual, and Heather is a case in point. There is no answer to "why" she has been put in such a terrible position, which does not keep us from asking the question. I hope it helps just a little bit to know that I and many others think of you often and send prayers and/or good thoughts your way.
Joanna

Rosie, I`m going to tell you something, at the end of May, my 22 yr. son was found unconsious, in pa..........I immediately flew down.......he`s recovered, after 3 weeks in ICU, and I will tell you no one can understand the agony of helplessly watching a sick child. I sat by his bedside and could only hold his hand and watch the respirator do it`s job. It is the absolute worst thing in the world. It does produce so many emotions, you want so much for them to get better, but ultimately,you know it`s not your decision. No One can say they understand, until it happens to them. We still don`t really know what happened to my son,other than ARDS, the fear is there that it will happen again. With all Packers problems, I left Maine without thinking twice and left him in the neighbors care........I have been touched by what you are dealing with, I know your emotional pain is horrid, and believe you and Heather are in our prayers......Dee

Rosie, Dee, and Brian,

I am thankful everyday that all I have to deal with is a dry mouth and swallowing disfunction. I guess those of us grousing about such minor problems sound like some rich guy complaining about the cost of keeping his second home and his mistress.
Thanks for reminding us of how lucky we are and how badly some of our brothers and sisters have been struck by this same disease. I wish all the best for Heather and Packer.

Danny G.

Danny G,

Your dry mouth and swallowing issue might be minor compared to what Heather, Packer and others are going through. But that doesn't mean is isn't a major issue for you. I remember when Heather's RAD treatment was initially proposed. The docs insisted she needed both sides of her face and neck radiated, but she refused. The reason?...........she didn't want to have to live with a dry mouth the rest of her life! She already had somewhat of a dry mouth after her surgery and felt that to be totally dry permanently was an unacceptable side effect. No one, myself included, could sway her from her decision. And believe me, we tried! To her, it was a MAJOR issue.

Besides, helping one another cope with this terrible disease is what this forum is all about. Some issues may be more intense than others, but all issues are important to the people that have to deal with them. And the newcomers especially need information on ALL the issues. I sometimes might wish that Heather could trade places with some of you, but that doesn't mean I still don't wish you all the best outcome. I rejoice when I read about each success, no matter how small. It helps gives me a small measure of hope.

(For those of you who wonder.......no, the decision to radiate only one side had nothing to do with her recurrence. The second tumor is on the same side as the first. I personally doubt that this is actually a "recurrence". I think there is a strong probability that there was a second tumor right from the beginning.)

Peace, rainbows & hugs,
Rosie

Rosie, what you posted on 20/7 made me feel so uncomfortable as I am always complaining about side effects of treatment while some people like Heather is still fighting a life battle without knowing when the rainbow will appear. I may be asking too much (as my husband always said so) but is it fair to compare myself to a rich man asking for a second home ? I don't think so. I am here to give support, to share my experience and to ventilate. A statement has come to my mind this morning that may explain why I am so attached to this forum: Shared grief is half the sorrow, but happiness when shared is doubled.
My heart goes to you and Heather and all stage 4 cancer fighters.

Karen stage 4 tonsil cancer diagnosed in 9/01.

A great quote!!! I think we should use it on the site at the top of the forum page. It says it all so well.

Hi, I like to read the posts about dry mouth, small aches and pains , Peg tube feedings, because , besides giving good information, these are things we have CONTROL of, we can get drug store products, use liquids better, get pain meds, once you get past the idea of the tube, get all the liquids and nutrition you need to get built back up again. Even the emotional side you can make things better maybe just by venting. We can control all of this Cancer is not as easy, it takes things out of our hands. Packer 66 and Rosie , I pray for you every day. Brian, don't try to take the world on your shoulders, set back and say to yourself "This is a great thing I have done here to have a forum where people who have suffered from the same type of Cancer can talk to each other, help each other and maybe find a way to make their day easier" It is good to know you are not alone with the problems with this disease. It takes one day at a time, and each day a small problem may seem very big.