[wow]

Wow Rick I just signed on for a quick look before going to bed and got a surprise. I really like the new look. Great job

[Palliative Care - a bit long]

Margaret No words can express just how sorry I am that you have to face this nor how much I admire your courage. Cherish every precious moment. Lillian

[summing things up]

Many of you know that I have been writing the story of mine and Johnny's relationship and my life sense his death. I have often shared some of that writing with you. You have been very patient with me and kind.

There have been many discussions here about some of the things that I have written about. Things that are very important to me. Now I have fininshed writing my story. I'm not sure that I will ever even try to do anything with it. It has helped me get as far as I have come so it has served it's main purpose.

The last chapter is a short one but it sums up all that I have learned and some of the beliefs that I have come to know sense Johnny's death. I would like to share it with all of you. I think there is much that you can relate to so please bear with me.

Last chapter:

Being a care giver is one of the hardest jobs a person can ever do. It can drain you physically, mentally and emotionally. It can also be one of the most rewarding things you will ever do in your life. It doesn't matter if you chose it as your profession or if it is thrust on you when someone you love needs that special care.

When someone you love is diagnosed with Lung Cancer those things are multiplied ten times. Not only is your world turned upside down but your heart is turned inside out. Life will never be as you know it again. Not only do they have cancer but you do as well only in a different way.

Most people who know Lung Cancer up close and personal describe it as a roller coaster ride. No other name could be so accurate. Just one small piece of good news can send you soaring to the heights then one unexplained pain or symptom can send you plunging down again. As a care giver there will be times when no matter how much you love someone it just gets to be too much. You just want to stop and get off but you can't because the ride is moving much too fast. Just when you think that you have given all that you have to give you will be asked for more. That is when you reach down into the depths of yourself and find more to give.

The physical side of the disease is bad enough but the mental and emotional side are often more devastating. The two main treatments for Lung Cancer consist of pumping poison of one kind or another into a persons body. Poison that can not only kill the cancer but many other good body cells. Cells that are needed for a person to live a normal and comfortable life. Those poisons make a person's hair fall out and deplete the cells in the blood. Red cells that carry oxygen through the body and white cells that protect against other diseases.

All of those things produce emotional and mental side effects that destroy a persons sense of security. Add that deadly attitude that I talk about and you have a situation that that causes havoc in every life that it touches.

I have written much about that attitude and now I want to try to explain what I mean. There are at least two sides to that attitude, each as dangerous as the other. Lung Cancer is the only major disease still seen as something a person brings upon them self. Even AIDS has become a disease that people no longer see as something that people deserve because their life style asked for it. Sense tobacco smoke has been linked to Lung Cancer most research into other causes have been stopped.

Billions of dollars are spent world wide every day trying to find a cure for AIDS and other forms of disease. Lung Cancer has become the biggest killer in the world yet only a fraction of the money spent for research on other diseases is spent on Lung Cancer. Why? Could it be the stigma attached because of the connection to tobacco smoke? The idea that people bring it on themselves?

Only 15% of smokers ever develop Lung Cancer. On the other hand nearly one third of those diagnosed have never smoked or been exposed to excessive amounts of tobacco smoke. The fastest growing number of new diagnoses is in women in their thirties and forties who have never smoked nor been exposed to smoke. It seems that should make someone take notice and try to find out why.

I have heard some real horror stories associated with that part of the attitude. There are actually people who have been called liars because they tell people that they never smoked but still have Lung Cancer. Not only by those who don't know any better but by those in the medical profession who should know better. Then there are those who are not diagnosed until they are in the latest stages of the disease. Why? Because despite having all of the symptoms their doctors would never order tests for Lung Cancer, in some cases not even a simple chest ex ray. The reason given was because they did not smoke so they could not have Lung Cancer! And that came from professionals. People that a person has to trust their life to.

Now I come to the other side of that attitude. The side I know is responsible for Johnny's death and possibly hundreds if not thousands of others. Lung Cancer even when caught in the earliest stages is considered a killer. No matter how determined the patient or the doctor is to beat it there is always that underlying thought. Even the best most aggressive doctors do not really have faith that the person can be saved. They may try to always show a positive attitude but what they would never say in words comes through in both body language and often in the treatments they prescribe.

Medications can be a God send for someone who is suffering. They can also be killers when given indiscriminately. Often those drugs are given to Lung Cancer patients under conditions that they would never be given to anyone else. There are multiple warnings about them affecting a person's breathing. There are also warnings about mixing some of those drugs. I will never forget what I was told by that pharmacist on the Washington medical board. "When a person is diagnosed with Lung Cancer they are considered terminal and all precautions no longer apply."

I have been involved in many discussions about statistics. Most people agree that they are not only inaccurate but dangerous. Statistics take away hope when they are as bad as those associated with Lung Cancer. I believe that those statistics are what cause doctors to not have any hope of curing a person and throw away caution when giving drugs that can and do kill. How many deaths actually occur because of those drugs not cancer?

Those statistics are at least partly responsible for that deadly attitude, the treatments given because of the statistics cause more deaths. A vicious circle just continues. The statistics end up feeding themselves. The losers are always the patients who have to not only fight the disease but that attitude as well.

Time and time again I encountered that attitude while caring for Johnny. I was even asked point blank what I was going to do when he died. I was asked that question at a time when he was so well that it seemed certain that he would beat the cancer. I was also asked it by an cancer surviver! Someone who should have known better. When I questioned them allowing him to become addicted to the Vicodin I was told time and time again "what difference does it make? he has Lung Cancer". The difference it made was his life, not only his life but the quality of both of our lives the last few months that he lived.

When as a care giver to a loved one your hope is constantly under attack it takes a heavy toll. No matter how hard you try that hopelessness affects your behavior. It can also be transferred to the patient by body language and other things.

I can not help but wonder if the medical professionals approached Lung Cancer like they do other diseases how many more lives could be saved. In most cases doctors treat an illness or medical problem like something they can either cure or control. I hope that someday they will apply that same attitude to Lung Cancer.

Now I come to something else that I believe very strongly in. No one has the right to judge another's quality of life. No one has the right to end a person's life because they judge their quality of life as not worth saving.

In almost every instance I have noticed that a person died not long after receiving Morphine. That is a subject that I have had lengthy discussions about with a number of people. I know that in some cases when a person is actively dying Morphine eases them out of this life with less discomfort. I have no problem with that. My problem comes when it is given when a person is not actively dying or for things it is not meant to be used for.

Recently I learned about something called "futile care policy". It is something that is not well publicized so few know about it. It has also not been legalized in many places or hospitals. Because of what I saw with Johnny I know that many hospitals and doctors follow that policy even where it is not legal. I also know that they can put anything in a person's medical records to cover it up. That policy states that a doctor or hospital has the right to judge weather a person's life is worth saving. If they decide it is not they can refuse any treatment that could keep the person alive. They can also justify giving those drugs that kill by using that old rule of double effect.

I have read several stories where treatment had been withheld from a person because they were considered unable to be saved or their quality of life not worth saving. A family member would not accept that and hired an attorney to fight for the person to receive care. Once care was ordered or another doctor took over the case the person recovered and went on to live and get stronger.

I believe that no one has the right to play God!

I know that cancer did not kill Johnny. I also suspect that he may not have had cancer. If he did I am sure it was in a much earlier stage than we were told. I strongly suspect that fungus was a large part of what was in his lungs. I have read about others who have had fungus at the same time as cancer even when never exposed to the things that Johnny had been.

Johnny never fit the pattern of those who have Lung Cancer. Not from the moment he was diagnosed or during the time he was dying. As soon as he received treatment for pneumonia his condition started to improve. By the time he started chemo he had already started to gain weight. He had no pain once he received the therapy that relieved the pain in his shoulder and neck. His breathing steadily improved along with his lung sounds. While at chemo the differences between him and the others being treated were very obvious. During his death he displayed none of the things that are normally a part of the dying process, especially those associated with Lung Cancer.

Not one time did he receive the proper testing needed to not only give an accurate diagnosis but to rule out other problems. He was never tested to check for liver damage caused by drugs. A standard precaution in most people being given any drugs that could affect their liver. He was also never seen by a pulmonaligist to evaluate his lungs or help with the problems caused by his disease and the medications he was being given. From the very beginning his treatment was substandard to say the least. Even more it was harmful.

I believe that many of the reasons for that were because he was a smoker and also because he was older and alone before I got there. Often his doctor he was going to would not answer his questions. The only time that Johnny ever got any kind of answer or co operation from him was when his son showed an interest and went with him. I find something very wrong with that.

Had his doctors tried to find out why he didn't fit the pattern they saw in other patients they may have saved him. At the least they could have saved him much of the mental anguish he endured because his anxiety problem was never properly treated. By following his case to learn why he did so much better than most others they could have possibly learned something that would help others someday. At the very least they may have learned how and what to check for that could be at least partially responsible for other things, fungus specifically. Because they tried to make him fit the pattern that they knew instead of finding out why he didn't he lost his life and an opportunity that could possibly have helped others was lost.

I want to advise anyone who faces a serious illness weather it is your own illness or that of a loved one to find a support group. Not only will they help you deal with the emotional side of your illness but they can provide a wealth of information. There are hundreds of treatments for most diseases. Often we only know about a few of them. By joining an on line support group you can learn about what else is available. You can also learn what tests can help with a proper diagnosis. You can never find another place where you will learn as much as you will from the people who are in the same place you are or have been there. I only wish that I had found my message board while Johnny was alive. I know that it would have made a major difference in our lives.

Johnny and I often spoke about our regret that we never had a child together. I have come to realize something recently. We may not have had a child together but our children do contain a part of both of us. I see a lot of myself in my children and grandchildren. Much of who I am I learned years ago from Johnny. He influenced how I think and feel about so many things. Because of that I have passed a part of him on to my children even tho biologically he is not a part of their lives.

Last night I got an email from Johnny's youngest son. I think about him often and worry about where his life is going. I have lost the anger that I once had at him for things he said or did to Johnny. I can see that he is still a child in many ways. Johnny loved him so much that he passed that love on to me. Hearing from him last night made me realize that his son's have also become mine in some way. So we really do share not one but all of our children.

Now I come to my beliefs and how and why they have changed. I also want to say something that I hope will make others more sensitive to those of us who have lost a partner.

Losing anyone you love is a very painful thing. When that person is the one that you share everything with it is impossible to make others understand. In one way I am fortunate. There are many people who just can not face being alone for any amount of time. I do not mind being alone. I am seldom lonely any more. I value my time alone and often guard it selfishly. I miss Johnny with every part of my being. He completed me. It is very hard to know that I will never have an intimate relationship again. I am not talking only about the physical side of a relationship when I say that. I am talking about the things that make up a couple who belong together.

I miss the hugs and the touch of his hand. I miss the light in his eyes when he looked at me. There is no one to share my deepest thoughts and feelings with. There is no one to laugh and cry with that knows just what makes me laugh or cry the way he did. There is no one who knows all of my faults as well as my best side. There is no one to love me unconditionally every day of my life even knowing my faults

I know that there will never be another man in my life. I make that decision knowing that I will never have the things that I have lost. I make it because I know that there is no one who could ever be more than second best. Not only would that be unfair to him but to me and the memory of the love that I shared with Johnny.

I am sure that there are those who read about my belief in the signs from Johnny who think that I have either lost my mind or am telling myself what I want to believe. I can certainly understand that. Just a few years ago I would have thought the same. I have heard it said that a true test of your sanity is if you question it. I have questioned mine so much that I am just about guaranteed to be sane!

I have lost many people in my life time. Three out of four brothers have died and so have both of my parents. There have been many other family members and other people who were like family. I never experienced anything unusual after their deaths. I always believed in God and the Bible and it tells us that we will have everlasting life. I never really thought about it other than that. I didn't deny that life goes on I just didn't ever really think about it. I'm not sure why it took Johnny's death for me to start to experience things that have made me really believe that life does go on. Maybe it was because being so alone my need was so great. I think the real reason is because the bond between Johnny and I is so strong that nothing can break it.

I have questioned myself time and time again. I have doubted what I have seen only to have things happen that I can not doubt. Once things started happening to me I became more aware of other people talking about what they have seen. Almost every person who I have met sense Johnny's death have had some kind of experience that tells them that their loved one is still with them. Many of the things that have happened to me have been shared by others.

Until recently most people kept that kind of thing to themselves afraid that people would laugh at them or think they had lost their minds. Today life after death is a subject that has found it's time. You hear about it everywhere, on television in the movies and on the radio. There are hundreds of books written about it and more songs written each year. Not only does this give us hope of seeing the ones we love again but it gives us hope for ourselves. In a time when Earth seems to be plagued by more and more natural disasters we all need that hope. We also need to turn to God more. I can't help but believe He allows some of the disasters so we can find the best in ourselves and reach out to Him.

It is time to bring my story to a close. I don't know where or when it will end any more than I know when or where it started. It is just time for me to go on to the next phase of my life. Time for me to live my life the best that I can until I leave this Earth for a better place.

I have written many things here. There are some that I will go back and remove. I was very angry and wanted to somehow punish Johnny's sons for the way they had treated him and their seemingly lack of love for him. I wanted them to see how much he had sacrificed to keep them from being hurt. I wanted them to see just how much they have lost. I know that was wrong. Many of the things about their mother Johnny would never tell them. Not only did he endure years of mental abuse from her to protect them but he sacrificed the kind of relationship with them that he wanted and needed. If I let my anger be responsible for them learning those things it would not only be a violation of his trust in me but would make all that he endured have been for nothing.

I know beyond a doubt that Johnny still lives in a dimension that exists somewhere close to ours. I believe there is just a thin vail separating the two dimensions and sometimes that vail slips and lets us have glimpses of that other dimension. I know that Johnny sees and knows what is happening in my life. I also believe that he does what he can to help me. I know that he is staying close to me because I need him so much but I believe it is much more. He still needs me and is waiting patiently until the day that I will join him. As the words of the song says "Every now and then as soft as breath upon my skin I feel him come back again and I believe."

[thinking of him]

No matter how the rest of the day goes Johnny is the first thought I have in the morning. At night I talk to him and tell him how much I still love him. Then before I fall asleep I thank God for the love we have for eachother. It has become as natural as breathing and I don't plan to ever stop.

[What not to say to a grieving person...]

Paddy doesn't it just seem like by not letting you talk about him that they are taking away what you have left? I felt like no one wanted to remember Johnny or to let me remember him. When I had no one to share the good memories with my mind kept going back to those last days and reliving them with all of the pain and desperation they had.

No matter how far I seem to have come there are still some things that I just can't handle. Today I thought that I would clean out some of my files, spacifically a file that contains many of Johnny's personal papers and cards that I had sent to him. That was a mistake!

I can't even look at the receipts for his oxygen without falling apart. I can't throw anything away that was his or from our time together. Just looking at those things shatters all of my assurance that I have worked so hard to gain. Every memory is still there and every nerve in my body aches with the pain of losing him. I have been in tears for the past two hours and don't know how to stop them. Does anyone else have this problem?

I did find a card that I had sent to him not long before I went to be with him. It says so clearly what I felt then and what I still feel. I would like to share it with you. Someone really knew how to say what was in my heart and still is.

" you probably know how much you brighten my life when we are together but do you know how much you brighten my life when we are apart?

When something exciting happens I think of you and I picture myself running to tell you all about it and we hug and share a laugh.

When I'm faced with a tough situation I think of you and imagine what you would do or what you'd say to help me through it

Even when there is nothing going on I think of you and your ability to make life's dullest moments fun.

You see even when you are somewhere else a part of you is always here with me." Leslie Kamp

How true and how painful those words are because now he is somewhere where I can't even call him and where I can't touch him and it breaks my heart all over again to see those words and know how true they are

[What not to say to a grieving person...]

I heard everyone of those things. The truth is nothing helps. Nothing reaches deep enough to dull that pain that is ripping your insides out. I know too that people really don't know what to say and that makes them uncomfortable so they mumble some stupid things out of desperation and the need to say something.

What I needed more than anything was for someone to just be there and listen. Let me pour out my love and my heartbreak. Most of all I needed someone to acknowledge that Johnny existed. So many just acted like he had never been alive and the most vital part of my life. I would say his name and want to talk about him and people would just change the subject. It was as if they thought that by doing that I wouldn't think about him and hurt so much. I know their intentions were good but those things just made my pain more intense.

[lighting candles]

thank you! What a wonderful idea

[Joanna]

I add my prayers to all of the others

[Two Years and counting: My journey]

Bless you Ann for being the special friend that you are.

[Two Years and counting: My journey]

Thank you Gina and Karen for your kind words. I have to be honest with you. I really do want to find a way to use my experiences to try to help others but much of what I do is selfish. Being able to write about these things and share them with others has literally saved my life.

When Johnny died I was lost and alone. All of my life I had taken care of someone from my mother when she was hurt and I was only 15 to my husband, children and grandchildren and then Johnny. Not only did I lose the love of my life but the one thing that I had always done. The one thing that seemed to be my purpose for living. When he died all I really wanted to do was just lay down and die so I could be with him again. Seeing the way he died and knowing the reason for it was the one thing that kept me going. I had to find a way to somehow let people know what I knew. I had to find a way to somehow work to change that attitude that I knew was responsible for his death. To do that I had to learn as much as I could about Lung Cancer and all that goes with it. I started to research.

All of my life I dreamed of being a writer. Words just come to my head and go round and round until I put them down. No one ever knew about that dream because I was afraid that I would be laughed at. I didn't believe I had the talent it would take. One time I showed a poem I had written to my husband. His response was that I should find something else to do instead of wasting my time on something so foolish. After that I wrote in private and never shared what I had written with anyone.

When Johnny and I first got in contact again I wrote him long letters. He told me that I had a way with words and should write. I had not told him about my dream of being a writer yet he encouraged me to do the one thing that I wanted to do. After a while he wanted me to write our story. He said our love that had lasted so long and the way we found eachother again was a love story for the ages. He said it would be a best seller. At the time he had no idea just how much our story would grow. How intense it would become.

Using my reasearch and the talent that Johnny told me that I have I wrote a paper stating that it is time for a change in the way cancer is viewed. At the time I was in contact with a lady at CTCA in Seattle. She asked permission to print my paper in her monthly news letter. She also suggested that I find some cancer message boards and post there. I took her suggestion and soon started getting letters from poeple. Some were telling me about their experiences with that attitude and others were thanking me for helping them.

I'll never forget two of those letters. One lady asked if she could print my paper in the monthly newsletter for her breast cancer surviver group. Another told me that she had looked for and printed out everything that I had written. She said that she kept it with her and when she started to lose hope she took them out and read them.

It was during that time that a lady from The American Cancer Society suggested that I join an experimental on line bereavement group for people who had lost a partner to cancer. I joined and between that and my writing I found a way to get through those first few weeks. It was not long before I realized something. Even those who had lost someone to cancer still had that same attitude toward Lung Cancer. That is when I knew that I had to do all I can do to work on changing that attitude. It gave me a reason to live.

I needed to find a way to honor Johnny's request and write our story. I just had no idea how to begin. I started keeping a daily journal. In that jounal I poured out everything that was in my heart. All of the fear, pain and anger. Every experience that I had went into those pages good and bad but at the time most were bad. I used the pages of my journal to write long letters to Johnny and I used them to document everything that I was learning about Lung Cancer and the medications that I knew had played a part in his death. I called my writing A journal of passions because that is exactly what it is. All of the passion inside of me from love to hope pain and anger are in those pages. I began to see that maybe someway I could use those pages to help support others who were going through the same thing. That gave me one more reason to go on living.

Everytime I see someone else who has lost their partner, husband , soul mate I go back to that time. I feel all of that raw pain again. I think that helps me to be a more compasionate person. I know that people mean well when they say all of the standard things. I have heard them time and time again. The truth is if they have never been there they just don't know. Often the ones who have been there will not tell the whole truth because they just don't want to take hope away from those who are just starting out on this journey.

The honest truth is that you never really heal. Time does not heal all wounds and time alone does not make it better or easier to live with. It takes love, faith, prayer and a lot of damn hard work to begin to live again. Even then it will never be the life that you knew before. Your world has changed. There is no more balance in your life. You have to learn to live in a world that is slightly off center.

Whenever you lose anyone you love your life changes. They take so much of you with them and they leave so much of themselves with you but losing the one person who you had the most intimate circle of love with increases those things one hundred fold. At first you find you have all of that love and nowhere to focus it. You no longer think that you still have the love coming back to you that has always been there. The most intimate relationship in your life has changed. The one thing that you have to realize first is that it has not ended. The love you have for that person is still alive and even if they are no longer with you physically their love still is. Once you learn that you can go on to the next stage of learning to live a different life.

One of the hardest things for me to overcome, and I'm pretty sure that others feel it too, is the feeling that if your heart doesn't constantly bleed you are somehow being unfaithful to the love that the two of you shared. You feel like without the pain the love will die. Getting past that takes the longest and the most work.

You have to realize that the pain does not go away. It just becomes manageable. I have one way to describe it that I think everyone can relate to.

Several years ago I found out that I have TMJ. I found out because I developed a constant ringing in my ears. At first it was so bad and so distracting that I felt cut off from the rest of the world. The same feeling that I had when Johnny died. It took months of work to get the ringing to a point where I can live with it. Because the damage had already been done it can not be reversed. Now I am always aware that it is there but most of the time I can live without it interfering with the rest of my life. Yet there are times when it is very quiet that I hear it just like I did in the beginning. I have that same sense of being disconnected from the rest of the world. The pain from losing Johnny is the same.

Everyday of my life I know that it is there. It is like a ache that never really goes away but I have grown so used to it that I can live with it. Still there are those times when once again the pain flares up and I realize that there is a part of me that will always be just as raw, just as displaced as I was that first day. The only way to really go one with my life is to accept that and learn to live with it and when the time comes that the pain gets too great I just let it comsume me for a while, then slowly I can pick up the pieces and start to live a little again.

I only hope that somehow I can really be of help to others. There is not a lot I have to offer but I think that really understanding is the first step to not only help others but myself as well.

[Feeling lost, please please help me.]

Rosegarden

The first thing I want to say is that my heart goes out to you. I can feel your pain as well as that of the rest of your family.

Guilt is a natural part of losing someone you love. No matter what or how much you do you will always question if you could have done more. Believe me when I say this. I am the very last person that would speak out on the side of medications but I know that there is a time when they are required. There is no reason to allow someone you love to suffer when there is nothing more that can be done and there is a means to help them. When you think about agreeing to the medication remember you agreed because you love your mom and want what is best for her. You have nothing to feel guilty about.

Talk to your mom and tell her how much you love her and while you are at it tell your dad and grandma how much you love them. May God give you the strength that you need to be there for your mom and each other. Lillian

[Off the beaten path]

Ginny I know how hard it is to have so many memories in a place. Part of you can't face leaving them and another part can't face living with them day after day. I had to make the decision to move just 4 months after Johnny died. As hard as it was it was the best move for me to make. There are times I think about our home and would like to see it again and maybe someday I will but for now I know I am better off here.

[Tragady, miracles and random thoughts]

So many thoughts go round and round in my head and they just won't leave me alone until I write them so here goes.

Everywhere you look today there seems to be one huge tragedy after another. Of coarse none has ever hit so hard or taken so many lives at once as the recent tsunami. Just a couple of days ago another surviver was found and everyone is calling it a miracle. I believe very stongly in miracles but I believe that the real miracle we are seeing in the out pouring of compassion. So many people have opened their hearts and set selfishness and old prejudices aside to help. As devistating as the loss of life and and the destruction of lives has been I can't help but think that the real tragedy is that it had to happen for people to reach down and find the best of themselves.

Tragedy happens everyday on a smaller scale. Thousands die from disease and war yet most people just turn their head and go one with their lives until it hits close to home. We of all people know that.

As for miracles they happen everyday. We are just so busy with life and often so closed minded that we just don't see them. Look around you. Every child that is born, every flower that blooms, every plant that sprouts and every breath that we breathe is a miracle.

All of my life I have believed in God. I just never talked about my beliefs. I used to tell myself that was because my relationship with Him is so personal. I know now it was because I feared being called a fanatic. I was more worried about what people thought of me than about what God wanted from me.

It took a tragedy that turned my life upside down and left me alone to face my loss and a deep anger at my God and work though those things. Any of you who were here when I first joined this board will remember my bitterness and anger. I'm sure that most of you saw me as a lost cause, someone who could never be helped. I can certainly understand that because I saw myself the same way.

I cursed fate for taking me where I was but it was that same fate (I know now it was God) who once more took charge and let me to where I am now. In my wildest dreams I would never have suspected that I would be here now and saying the things that I am. Even more who would have thought that I would have beliefs that have become so strong.

Circumstances uprooted me once again and I was brought to this beautiful place. Every day I was surrounded by the miracle of life. My heart may never really heal but slowly my spirit started to heal. It took another tragedy that nearly took everything from me again to make me really understand and open my heart completely to my faith in God.

When I came home after the fire I had made up my mind to move from here. I just didn't think I was strong enough to face the possibility of another fire or having to start over again. Then I looked around me and I saw what I know could only have been a miracle. There are 60 homes here where I live. The fire completely surrounded the park and was moving in from all sides. The flames were up the mountains on both sides and they are at least 500 to 600 feet high. There were only 5 fire trucks to fight and save our homes still only two were lost.

The firemen had to focus on saving the homes that they knew they could and abandon the others. In some places that fire burned right up to the back door of homes. There were several where trees hanging over the home burned. Yet those homes were spared. That replayed itself through this whole town. Had the fire burned straight through nothing and no amount of work could have saved anything. All would have been lost. Instead it skipped large sections of trees and the fire passed without touching those homes. In all 26 homes were lost but the majority and the town were spared. Surely the hand of God had to be at work.

It was more than seeing what the fire did and could have done. It was the out pouring of compasion that made me see what a wonderful area I had come to call home. I couldn't leave here. Sense then my spirit has continued to heal. Yes I still have bad days but I somehow manage to live with them. Most of my anger and bitterness is gone. I have learned to forgive most of those that I was so angry at, myself encluded. There are still those that I can't forgive and maybe never will but some how I feel that keeps me focused on doing what I can to change something that I know needs to be changed.

I have been blessed many times in my life despite the losses I have known. Two of the most recent blessings have been finding this place and the people where I make my home, the other finding and joining this family here. No matter the differences or disagreements that often take place here this is a very special place. It may have taken each of us our own personal tragedy to find it but unlike the rest of the world we don't forget. Once the initial shock and fear that brought us here subsides we still come back. We still give support and compassion. That is so very special.

A few nights ago I got very upset while watcing the evening news. The remark was made that maybe so many natureal disasters are happening because Earth is trying to tell us something. Even seeing what is happening they could not use God's name! It just never occured to them that might be part if not all of the problem.

It is not my intention to try to push my beliefs on anyone. I just want to show how my life has been changed by my faith in God. It is up to each of us individually to find our peace with ourselves.

I have just one more thing to say to those of you like me who feel that when we go to an event where public prayer is no longer allowed our right to worship where and when we wish is being denied. No one can stop you from opening your heart and saying a simple "Thank you God". Isn't that what prayer really is anyway?

[Reaction to the Hospital]

luluc did you ever consider the possibility that the experience you had that made you think so intensely about you brother might be a sign from him letting you know that he is still with you?

I have learned something that I heard John Edward say one night is so true. "don't look for a banner saying 'I am here' it is the little things that that you may not pay attention to."

[Reaction to the Hospital]

Just three weeks after Johnny's death I had to take his daughter-in-law for a check up after her baby was born. Until we got there I didn't realize that we were going to a clinic next door to the hospital where Johnny died. I sat in my car and looked up at the window to the room he had been in. So many times that last weekend I had stood there watching his window prepared to run back up if I saw anything unusual in his room. That expeience nearly destroyed me.

Other than the experience above I had never been back to a hospital again. Two months ago I had to take the lady I care for for a small proceedure. I had no idea that we would be going to the hospital until we were on the way. Such a feeling of dread came over me that I wanted to turn around and come home. When we got there the drive ran up a small hill just as the one in Olympia had where Johnny died.

I sat in that waiting room fighting with myself. I felt so strongly that Johnny was there that I had the urge to run to every room searching until I found him. Needless to say it took me days to get passed the emotions that experience brought on. And that was nearly two years after he died and over 800 miles away from where he died.

I think we just have to face the fact that some things were such an emotional experience that we will never be able to face them normally again. I wonder if everyone has had something like this happen. Those who have been able to go back may be of help to the rest of us if they shared what happened to them. As for me I don't know how I will react if faced with the same thing again.

Just one more side effect from having our lives turned upside down. Lillian

[Am I losing it????]

In 1969 I was 25 and my youngest son was born. I remember watching the space walk on television. I also remember the Manson headlines. I remember thinking that I was fat. OH to be that size again! What ever made me think that was fat?

The sixties were a good time. People still spent time together as families and most stores closed on Sundays and holidays. Music still sounded like music and songs had words that you could actually understand and they weren't vulgar

I can't help but wonder what our kids will remember about this decade when they look back from the age we are now. Will they have fond memories or will they want to forget that things seemed so screwed up?

Nostalgia what a road to travel down. Now if you want to hear about a real good year accidentally put up 1959 now that was a year

[something strange]

Alright I have had one strange thing happen to me today now I see something here that has got me freaked out When I was on the main page looking at this forum I saw the date of the last post listed as Wednesday December 31, 1969. Please tell me that somehow that date got put there by mistake and I am NOT seeing things and losing what is left of my mind Did anyone else see it?

[I need a hug (a rant and update)]

I just want to wish you and your mom peace. My mom changed a lot when she had lung cancer. Seeing the change in someone you love is hard enough but when they strike out at you it seems to hurt even more than it would have any other time. Just remember the words from an old song "you always hurt the ones you love". It seems like those words are even more true when someone is hurting or afraid themselves and you know that your mom has to be hurting and frightened. I will pray that all works out for you soon. Lillian

[California people, please check in! Need weather update!]

Not doing too bad up here in the moutains. I live at around 1500 feet. We had a little dusting of snow Friday but the major snow storm that was supposed to hit yesterday fizzled out. We had a lot of rain the beginning of last week. Everyone has been keeping our eyes on those burned moutain sides but they seem to be holding up pretty well with the rain so far. I think CDF had done a pretty good job or shoring up in preperation for the wet season. My only complaint is that if it is going to be cold and damp I would like to see just a little more snow. Got to get something nice for freezing our ***** off

[Just a Hello]

Hi Jane

It is good to hear from you. I understand completely how you feel. I have been doing much better myself but there are times I just can't come here and other times I think I would drown if I couldn't come here. One thing I have learned for sure is that the roller coaster ride doesn't end when your loved one dies. It just takes you through different territory and the twists and turns are sometimes even more frightening.

Bless you for your good heart and for helping to keep this haven available to all of us. Lillian

[Two Years and counting: My journey]

Two years and counting. My journey

I know there are many who like myself have recently lost the person who defined their life. I know only too well that feeling of having the world ripped from under you and the helplessness along with the desperation it causes. I also know that you feel like you will never know anything but that terrible pain that is ripping your insides apart.

I won't tell you that the pain will ever go away. I won't tell you that there won't be times when you want to just give up and die too. Those times will come. For many of you I'm sure it already has. I just want to tell you that it is doable. You can find a way to live with that hole in your life. It is not easy and often it is a very fragile thread that holds you together but it can be done. I'm hoping that some of my experiences may give you faith that things will get better. That life is still livable...

Four years ago I was at a turning point in my life. My children were grown and my grandchildren were growing up fast. I was still an important part of their lives but no longer one of the focal points of their lives. Still they were my whole life and it was hard to admit that their need for me wasn't as great. My marriage had never been the best. It was full of problems from the begining but I held on out of stuborness or desperation. I'm not sure witch. By the fall of 2000 I was facing 60 in a few years. I was also facing the fact that my marriage would never be fulfilling nor even peaceful. I saw nothing in the future but the same lonliness that had plagued me most of my life. I had no more dreams and was resolved to live the rest of my life just coping.. Not only had I lost my identitiy but much of my self respect. It was just too easy to go along with the prejudices around me than stand up for what I believed.

It was during that time while I was questioning when I had ever been happy and not stressed and was praying for a way to live the rest of my life with no more dreams that a dream turned my world upside down and changed my life forever..

I was trying to get the nerve to end my marriage of 40 years but I was afraid and felt that without my marriage I would be lost, a nobody in a world that I knew little about other than what was right around me. I also knew that if I ended my marriage that I would have to move back to my home state and leave my family behind. It was a decision that I just wasn't prepared to make. No matter how much was missing in my life how could I give it up and face a life with no one or nothing?

Then one night I dreamed about Johnny.. He was my first love. I had met him when I was just 15 and we had fallen immediately and deeply in love. Problem was he was 11 years older than me. Life and people conspired to seperate us and I moved on and married someone else. I had not seen nor spoken to him in over 40 years. I hadn't even heard about him in nearly 20 years.. Then out of no where I dreamed about him and couldn't get him off of my mind and soon realized that he had never really been out of my heart only buried very deep where I didn't have to face the pain of our seperation..

To make a long story a little shorter I searched for and found him.. I learned that on the night of my dream he had been overcome by fumes in his home and thought he was dying. He had prayed for God to not let him die alone with no one to love him. He asked for someone or something to make his life worth while. He was convinced that my dream was the answer to his prayer.

We talked on the phone everyday for a year. All during the time I was agonizing over my divorce and making one of the hardest decisons in my life he was there to support me. He never advised me to get a divorce in fact he made me really think and weigh what I would be giving up against what I would gain. He gave me support and made me feel like I deserved to be happy. In the long run once my decision was made we talked about our feelings for eachother and knew that they had always been buried somewhere deep inside of us..

I visited him twice but moved to California. I was trying to build a life for myself here and find a relationship with my family that was different but close, to somehow mend the problems that were caused by my leaving. They understood with their minds but in their hearts they were very hurt.. It was while in California trying to build a life and find a way to introduce Johnny as a part of my life that he got the word that there was a good possiblility that he had lung cancer. We no longer had the luxury of time. He needed me and I needed him. I dropped everything and went to Washington to start our life together and provide the care that he needed 43 years late.

I was with him only two days when I had to call 911 and have him taken to the hospital with pneumonia. Three days later he was diagnosed with lung cancer. I won't go into details about his diagnosis and the questions I have about it. I have talked about that before. I will say that even with him in the hospital for nearly 3 weeks our relationship was something that people commented on. They could not believe that not only were we not an old married couple but had only been together for a few days..

We moved from the hospital to an apartment that I sat up and furnished the best I could. His health steadily improved and we had the most amazing time of love and happiness that either of us had ever known. Things seemed to be perfect and his health was improving so rapidly that people were constantly commenting on it. Then one day a nurse made a fateful comment. He told Johnny that it didn't matter how good he was doing or how good he felt he would never be cured and would be on chemo for the rest of his life.. Johnny had convenced himself and everyone around him that he would be cured. As long as he believed that he improved. Once that hope was taken from him our lives became a nightmare of panic and anxiety attacks. I spent the last two months of our life together trying desperately to get help and never finding any.

When he died my world ended.. We lacked one day having 5 months together. Out of that 5 months nearly a month and a half was spent with him in the hospital. The first 3 weeks and the last two weeks. Still that was the happiest months of either of our lives. Then he was gone and I didn't know where to turn. I had nothing to hold on to. I have never known such pain or agony in my life.. I had no purpose for living and no desire for anything that life had left for me. I was adrift in a world that had become hostile to me..

I was also in a place that I had only lived for a few short months. I was alone with no family and no friends. I had his family but my relationship with them was shaky because I blamed them for much of the pain in his life. They had not been there when we needed them even more important they had not been there when he needed them before I got there. I had no more job and when I did finally start trying to find one nothing worked out. I would all but be told I had the job and a few days later get a letter saying that I wasn't qualified. I began to feel that because I was asking questions and filing complaints about Johnny's treatment that I was being blackballed.. Then there was evidence that someone had somehow gotten into my email and was spying on my instant message with Johnny's niece. I started feeling uneasy and afraid to go out at night.

Just 4 months after Johnny's death I had to make the decison to leave Washington and move back to California.. I had to leave the home we had shared. The place where we had been so happy together. The place where I still felt his presence. Once more my heart was being torn apart.

I was not only hurt but I was very angry. I was angry at the people who I blamed for his death and I was angry at his family but most of all I was angry at God. He had seemed to answer my prayer when I found a treatment center that was willing to treat both his physical condition and his anxiety. He had improved over night and I was so certain that he would be alright again that I ignored some danger signs that I shouldn't have missed. I saw things done to him that I knew were wrong but let them go because I was so certain that God was going to save him.. I just didn't count on people and what they would do. So I blamed God and felt that my faith had betrayed me.. Getting my final divorce papers and the aplication for the new treatment center on the day of his death just added to my sense of injustice.

Once back in California I started work again as a caregiver. I worked hard and tried to stay detatached but one day a man I was caring for gave me hope again.. He said something that made me know that life does not end when a person dies. I had seen so much evidence of that after Johnny's death but it was having it confirmed by that man that let me start to turn to God again. I still had to battle the anger and depression but it was a start.

Once again circumstances caused me to move just 6 months after being settled into a new place and job. My niece was moving and to be near family I had to make the decision to move too. It was hard but I did it.

Once here I decided to take time off of work and get my life back together. I spent 6 months nearly isolated here. I had no television and saw very little of my niece. I spent hours just meditating and writing the story of mine and Johnny's life together. I had little money and no insurnace so I could not afford to go to therapy and I was afraid of medication after watching Johnny die because of it. I had to find a way to make it on my own. That proved to be the best thing for me..

Slowly I became a part of this small community. I started meeting my neighbors and joined the small church across the street.. I also relived my life and searched my heart and soul to learn how and why I ended up here alone. Then a fire came and I had to evacuate and leave what little I had behind. I had little time and could take only a few things with me. I thought that I would lose everything. All of my personal belongings and all of the precious things I had left of Johnny's, everything that we had shared together from our bed to our dishes that I had bought just for us. I prayed for those things to be spared and by some miracle they were..

Sense the fire I have become a part of this community more and more. I feel like I belong here more than anywhere I have ever been except for those few precious months with Johnny.. I have lost most of my anger. I've learned that I can forgive without condoning and because of that I have made my peace with myself and Johnny's kids. I still have not gotten far enough to forgive the doctors in charge of his care and maybe I never will but I have enough faith to know that my God understands and forgives me for that weakness..

Slowly inch by inch I clawed my way out of that pit of depression. Sometimes I would be almost to the top then suddenly find myself back at the bottom again. I know that it is always there just waiting for me to slip back into it again and I have to guard against that.

I have come a very long way but I didn't do it alone. I have had the support of this message board and some very dear friends that I have made. I met one lady on this board who has become a special friend and through her another one who has become a dear friend. I have Johnny's uncle in Missouri that I have gotten to know and become friends with sense his death. I have the chaplin in Washington who Johnny had liked and admired who has been a friend to both of us. I have my friends and neighbors that I have met here and Johnny's family as well as my own.

My life is not perfect. I struggle everyday both emotionally and finacially. I work very hard as a personal caregiver. I have a few clients and most of the work I do is housework. These are people who have had no help for years and there is much hard work to get their homes clean and straight. I am not expected to do everything that I do but I do it anyway. I feel like if I give a little more I can make them feel like they deserve it. I know how important that would have been had someone done that for Johnny. I know what it would mean to me if I were in thier place. Unfortunately most of my jobs pay only minimum wage so I struggle to make ends meet. I am also very tired and at times wonder how long I will be able to continue at this pace. Still I feel like I am doing what I am meant to do.

There is not a day that goes by that I don't ache for Johnny. It is hard to live your life with no one to share little intimate things with. Sometimes I ache for a hug or a touch on the hand. I miss having him to snuggle at night and I miss having him to laugh and cry with.. Still I am making it. I won't say I am healing because I don't think my wound will ever heal. I am just learning to live with things the way they are and make the most out of it.

I have learned that sometimes we have to reach our darkest hour in order to reach down inside of ourselves and find the best that we can be. I know too that is when we start to realize that no matter how bad things get, how dark our lives seem we are never really alone but always surrounded by the awesome power of God's love. That knowledge sustains me.

I believe in God and I believe in miracles. After all wasn't my dream that brought us together a miracle? I have had so much evidence sense Johnny died that he is still with me only in a different way. I do get lonely but that is a lonliness from missing Johnny. Being alone doesn't bother me in fact I am very jealous of my time alone and make sure to protect it as much as I can. But I know that I am not really alone. I know that God is with me and I know too that even if I can't see or touch him Johnny is only a breath away.. I feel them both helping and guiding me though every day.

I try very hard to be patient and compassionate. I want to help people as much as I can, especially people who are getting older or those who are ill. I also still want to work to change the attitude toward lung cancer that I believe is partly responsible for Johnny's death and so much of the havoc in the lives of those who live with it every day. I'm not sure if I will ever meet those goals but I don't give up hope. I know that everything starts with one small step. I want to not be angry anymore. I want to be the woman that Johnny loved and admired. I want to honor him and make him proud of me. I'm not sure how well I do with any of those things but I try and that keeps me going.

There are still times I feel like life of fate or God played a dirty trick on me by giving me and Johnny a second chance then snatching it away. Then I stop and think about how close we came to missing the time we had together and I know that no matter how painfull my life is now that time was a special gift to both of us. Each night I thank God for giving us that.

So you see as hopeless as it seems life does go on even when you have lost the one person who completes you. It is a struggle but it does happen. It is not the life you had before, that life is gone and learning to live with your loss becomes another life. That is what survival is, not healing. If I look to the future it overwhelms me and depresses me. I have learned to take it one day at a time. Sometimes one minute at a time....Life does go on!

[I am at a loss for words]

I read your post this morning and can't get you off of my mind. First of all let me say that I know nothing about brain mets except what I have read on this site and others about how effective treatment can be. I will leave others to address that issue.

There is one thing that I did learn a lot about and that is Panic and Anxiety attacks. Most I learned by trial and error and there is a lot that I wish I had learned sooner. Because of that I think I may be able to help you a little. First of all let me say that not only can those attacks be very frightening and dibilitating but they can interfer with treatment. I am not much on medication. I believe it should be used only when a situation becomes threatening. I know that you need medication now for anxiety. They can help but they take time to build in your system before they can do much good. So I will say to Jack call her doctor now. Ask for anti anxiety medication. If they stall use that forcefullness that you have and don't let up until she has something. Call every hour if you have to, just get it done.

Medication to help with sleep can be good and bad. If it helps you relax and get the rest you need it is good. If it causes you to sleep too hard it will make you wake up feeling even more vulnerable and increase the panic attacks. Jack while an attack is in progress there is not much you can do but be there. Don't try to touch her or don't get upset if she doesn't seem to hear you. Just be there so when she asks for something you can get it. A panic attack will make you feel short of breath and that leads to hyperventilating. When that happens the blood gases get out of balance and shortness of breath becomes an even bigger issue. If you are on oxygen turning it up can often make the inbalance worse. Try to get by without that if you can.

There are some ways to help avoid those attacks or at least make them less severe. You will find that certain things can trigger the attacks. Your first impulse will be to avoid those things. That can be a mistake. If you avoid the triggers they become a bigger issue and just thinking about them can trigger an attack. Soon you will not be able to do the things that trigger the attack at all and then something else willl take over as a trigger. The best thing to do is work on those triggers before the attack is full blown.

One of the most frightening aspects of a panic or anxiety attack is the feeling of being out of control. You have to program your mind to know that you are in control. That is where Jack comes in. I'm sure that you have been taught purssed lip breathing by now. When you feel that an attack may be comming start practicing the pursed lip breathing. Try to do it as slowly as possible. While she is doing that Jack breathe with her and tell her that she is in control. Continue this as long as it takes to settle down. Another thing that you can do when a trigger situation comes up is talk to her about other things. Get her mind off of what is happening in any way that you can. Often you will find that you are through with what would triggers an attack before it gets a chance to do it.

Another thing is meditation. Try to picture yourself doing the things that bring on an attack without having one. Your main goal is to relax. Often just the thought of a panic attack can trigger one or an anxiety attack. You will soon learn the difference. Panic attacks don't come as often and can be very frightening but it is the anxiety attacks that do the most harm. They are also the ones that you can work on to avoid. A panic attack comes on quickly with no warning. An anxiety attack builds slowly. If you can control the anxiety attacks you have a better chance of avoiding the panic attacks but no matter what you need medication to help.

Johnny and I got caught in a vicious circle of both panic and anxiety attacks. The fear of one would trigger the other. This is nothing to play around with. Get help now and do what ever you can do to make the situation better. Yes you have a disease that affects your breathing. Being short of breath is one of the most frightening things anyone can experience. When it happens and you have been told that the disease can kill you it becomes much worse. Just realize that right now at this minute you are NOT going to stop breathing. You can control your breathing and not only make it easier to breathe but avoid some of those attacks that are causing such havoc in your life. It will not be easy but I know that you can do it. I learned but I learned too late and I put too much faith in others instead of myself and Johnny. Right now concentrate on those attacks and let the doctors work on the mets and the cancer. At this minute the most important thing to you is ending those attacks.

I am no expert and I don't want to mislead you but I learned a lot because I had to deal with those attacks alone with no help from anyone. You have Jack and he is determined to help you and he has the personality to be as forcefull as is needed to get the help that you need. I only wish that I had.

Best of luck to you and please if there is anything that I might add that will help you in any way let me know. You will both continue to be in my thoughts and prayers. Lillian

[controversy]

I tried to come here last night but the board seemed to be down. I came again this morning to wish everyone a Happy and Healthy New Year and learned that once more a controversy is threatening the stability of this board.

I don't know what started it. I haven't read that much. I can only assume and I am glad that I didn't know about it until now. As you all know I am very openionated and would probably have said something that would have put me right in the thick of it. This way I can see the problem from a different level and want to make some coments.

There have been times when I have not recieved the response that I had hoped for to one of my posts. Sometimes that has hurt and disappointed me but I know it is because I represent a battle that was lost in most peoples eyes. I can certainly understand that. When I was where most of you are I didn't want any reminders of what could happen. I know as well or maybe even better than most how important hope is and how fragile it can be.

Everyone of us here are part of a very large and diverse family. Once you join here you will always belong. In our worst nightmares we could never have fortold that someday we would have a need to be here and certainly none of us would have chosen the circumstances that brought us here. The thing is we are here. We have one common enemy, Lung Cancer. No one here is the enemy. We are all in a struggle for survival even those of us who don't have cancer and have already lost our loved one. No one from the outside no matter how caring or compassionate they are will ever understand what it is like unless fate choses to play the same dirty trick on them that it did us.

My family is very large with very diverse ideas. We are all highly opinionated, especially where politics is concerned. My youngest son and I are about as far apart as you can get on that subject. For the most part we try to avoid the subject but often we end up in some very heated arguments. We are not the only ones. My point is there are two things that none of us would ever do. No one will bail out on our family just because things get rough and we certainly would never ask another to leave the family. It is just something that is not done!

Look around you at the world right now. There is so much pain and suffering. We don't really need more here. I can't remember his name but a very wise man once said something that goes like this " I may not agree with what you say but I will fight to the death for your right to say it". Difference of opinions cause us to ask questions and seek other avenues. Without those differences we would still be stuck in the Middle Ages. We need those differences because without them nothing will ever be accomplished.

So my friends, my special family, please let's heal the wounds and start the New Year off right. Take that anger and frustration and use it against the real enemy, Lung Cancer. We may not help find a cure but then again who knows? The one thing that we can do is use that energy to fight that deadly attitude that we have all encounted, the attitude that adds such havoc to lives already turned upside down.

I wish all of you a very Happy and Healthy New Year but above all I wish you Peace, Understanding and the Will to forgive and start anew. God Bless you all and as a person very dear to us would say "I am praying for us all".

[My Husband died yesterday]

I just want to let you know Cathy that my heart goes out to you. May you find peace and comfort knowing that he was home with you and your family where he wanted to be. God bless you.

[Justakid in the hospital]

I wanted to add my prayers but saw that they have already been answered That just shows that a very big miracle 2400 years ago is still leading to more. God bless and keep you well and home for all of the coming holidays. Merry Christmas