"I'm too busy living to bother about dying right now." That's a quote I pulled from your post. What an inspirational attitude.
To answer your question about "changing the rules" with my chronic pain and migraine pain, I have just tried to live with it work through it until that wore me down. Many people didn't believe me so I had to show them that I can just keep plowing though. Plus I am in the army so the "suck it up attitude comes second nature to me. Then finally some doctors sorta, kinda started to believe me and threw meds at me left and right. Tried to convince me I was depressed and depression causes chronic pain. I kept insisting that it was not depression and if I do have depression at some point it is because of the crappy treatment I received and the PAIN that I live with every day. So eventually I went through a "humour my doctor" phase. I tried everything that they gave me (mostly non-narcotic). Then I started standing up for myself again and telling them that even though they are the doctor I know my body and the crap that they are having put in it makes many things worse. Now I am at the end of my career and the only thing that helps is narcotic pain relievers and now I get lots of lectures about having them, yet in the beginning that is all they wanted to give me on top of the antidepressants........you can't win. Right now I am doing what I need, I found a doctor that I can work with and even if I don't agree the doctor will listen to me. So I am combining all tactics into one and bringing forward the more appropriate tactic for me as the situation dictates. Does that make any sense?
Anyway I am rambling on about my insignificant little problems when you are are staring death in the face and telling it you don't have time for it right now. You are an inspiration. I hope you get a second opinion and I hope that you can live your life your way that makes it easiest (and legal ;) ) for you and your family to deal with this circumstance. Whatever makes YOU more comfortable is what's best, always for anybody....it goes without saying that as long as it doesn't destroy someone else ;)
Please take care and if you ever want to chat. Send me an message.
Sarah

I don't like for anybody to tell me what to do, and that has gotten worse over the years, so if the doctors tell me to just accept it, it isn't easy for me to just do it.

I will definitely play the game my way, and the world needs to be ready to deal with me. Right now, I'm really upset because my doctor left, but nobody can tell me why, so I will be reassigned to another doctor. Oh, joy . . . :( Maybe my new doc will be worth looking at . . . just a thought. I'm sorry about your situation, but I'm guessing you have never been one to settle for anything. I wish you the absolute best.

For awhile I gave in to the diagnosis and the thought of living in pain forever. It may have had something to do with turning 40 at the same time. Having finally gotten to a point personally and professionally. I just sank.

Being at home with nothing to do, I found chat groups on MSN. They have long since canceled the service. What I did learn was that others out there with problems far worse than mine were not giving in to it. The ones who did give in, sounded pathetic, I didn't want to be them. So I learned to fight.

I took my strength from Pink, she was always tougher mentally than I, she had gone through so much more in her life experiences. She taught me to be stronger than I knew I could be.

Now I just do my research and follow the clinical trials online. I made the decision to participate in any and all new drugs, and surgeries that could help. The same old crap wasn't working for everyone else, I had no illusions they would help me.

Sorry to hear your prognosis, fight with all you have, dig deeper tan you think you can and dig deeper still. Look to every possible treatment center, look to all the latest drug to help you. Seek the finest doctors you can. Fight.

Ouch

oh honey, your post brought tears to my eyes. Once, they thought I had cancer, one MRI said it was, further tests revealed differently. Oh, I had had cancer before, just the kind that they could fix with surgery.

However, I went through some terrible feelings, scared out of my mind, and most definetly, trying to find a way to bend the rules to extend my life.

My father had terminal cancer, and I stayed with him that last few months.

The doctors said, and he did, go through the same greiving process that we do; only, he had to greive the end of life rather than living with pain. Having had my scare, I would much rather greive pain. But,
it was the first time I saw the greif process in motion, first shock, denial, anger, acceptance. If you ever need someone to talk to and I am online, please feel free to give me a shout. God Bless You......love susan

I agree with WhiteRose about the quote, remarkable attitude.

I want to apologise for such a rambling reply. I had so much to say and I'm afraid that I didn't get any of it out!
Anyway I just want to re-iterate that you need to deal with this your way. Love your family, be romantic with someone if you can, laugh and share with as many people as you can. Don't take BS from doctors. There could always be a miracle around the corner, you just never no. I know this may sound a little poly-anna (which I don't usually respond well to myself) but it isn't meant to be. Feel all that you need to feel, the good the bad the and the ugly. Without knowing what you are feeling you may not know the next correct course of action that suits you. Does that make more sense?
Take care,

Sarah

I don't know you or how you might be able to pull this off but I know people that have had cancer and went to MD Anderson and got cured, one my husbands boss the doctors told him to prepare his family for he had 3 months that was 22 years ago, another my uncle that took an excremental drug for his colon cancer no cancer in all his ck. ups in 2 years, Another is my daughters boyfriends brother who they told had no chance because it is to rare is now at MD Anderson in Houston, TX and is now in remission, a nurse I worked with child got cancer they went to MD when she was 6 she is now cancer free and 30 yrs old, where there is determination you can find a way. All my prayers.

I have been told I would suffer pain the rest of my life. That I would have to change my whole way of living in order to find some relief. I was depressed over this for some time. Then it was like a light bulb went off in my head and I got very mad. I thought who are all these Specialists telling me to expect a much lesser quality of life than I once had. Yes, they have seen all my test results, done surgeries and seen me inside and out but they do not know me. They do not know what kind of person I am away from their offices, they do not know how darn stubborn I am and they certainly do not know all the love and support I have in my life. I believe in myself and try to always keep a positive attitude. I honestly think your attitude has a lot to do with your healing. Sure we all have bad days when we just want to stay in bed with the covers over our heads but what does that really get us. It makes me feel a lot more depressed and in more pain. I have told you before that you are my idol. Such a wonderful attitude in spite of the cards you have been dealt. You have wonderful children who think the world of you and love you to pieces. That is strength in it's self. You just keep on thinking positive, as callmeouch says check into all the treatment centers and new drugs and research and learn. You are fighting the battle of your life and if I can help in anyway I would be pleased and honored to do so.

(((jene)))) I just want to send you some light today and let you know that I think you are a special person.
God Bless..
EllaBlue

There's nothing to say that has'nt already been said, but I wanted you to know I am for you 100% and keeping you in my thoughts and prayers. NO ONE knows exactly how much time any of us has, only GOD. And He just might have other plans for you!

u have definitely moved me with ur will to live....I send u many (((HUGS))) and lots of good vibes and wishes!!! I was diagnosed with MS 4 yrs ago and pain is part of my life and will be for the rest of my life...so on that note I can understand to some degree with the dx of ur death in 10 weeks I would say fight like hell(excuse my language) I think u have to much mojo to let itget to ya...I think u will prove them wrong....I am a fighter and daily I am fighting my symptoms of MS, although not life threatening it makes life miserable...Don't give up my friend...
Hugs
Morgaine

You should be an inspiration to us all. I know you are to me.
Don`t ever let these other humans tell you how long your going to live.
Thats not something that they can say. Its just another human`s opinion that went to school. Big deal. Many many times they have been proven wrong and I think your one of the ones to prove them wrong.
I`am sure its hard on you at times but you sound like you have a lot of will power and determination.
May your Higher Power bless you and keep you strong.
Thanks again for your inspiration.

I started not to write but I wanted to let you know that I'm thinking of you. I will pray for you. Sometimes if it wasn't for my hubby and daughter I wonder if I wouldn't be better off with god. I have been told several times that they know that I'm in pain but I have to deal with it. Deal with it? Thats all you have to offer to me for $60.00? Getting back to the subject, they say that everyone has a purpose or reason in life. I was wondering if you feel like you have accomplished or will accomplish your reason in life. If it is too hard or you don't want to answere I understand.

My initial reaction is red-hot anger, & the attitude of "if you aren't going to help me, get out of my way." 7 years ago, I had so many people tell me this, medical people, (former) friends & family, & I'm so glad I didn't listen to any of them.
When someone tries to tell me I just have to "live with it," I wish I had the power to touch them, and just for a few minutes, make them feel everything I'm feeling. They'd be on the floor screaming in two seconds.
I applaud you for your very healthy attitude...so many people have been told they only have a year left, but go on living for years and years.
Bright blessings & gentle hugs, & I'll be sending good energy your way.

Like everyone has said you have a wonderful attitude. Many people have been told they were dying or had diseases when in fact the doctor was wrong.

I hope that you have had your second and third opinion. I am sure you have done your own research and talked to others.

I plan to live my own life. I want to accept death if it is coming by disease on my own terms. I want to live my life and die with dignity.
We are not always allowed that luxery but that it is my wish.

I have read about people, seen people in movies and on tv, when told they were dying, they lived their life on their own terms. They made their preparations from the mothers writing letters, making movies to their children, to seeing their favorite places and seeing their favorite people.

I wish you the best.