lilyjohn

Annie My heart prayers and thoughts are with you. I pray that you are given what ever you need most at this time. Lillian

Hi Everyone I have been snowbound sense late Sunday night. No computer, no lights no phone and no heat. I had a lot of time to just sit and think. I came up with an idea that looks pretty good to me so I have decided to go with it. I wrote a message that I am going to send to all of my family and friends. It may not do a lot but again who knows. I think it is time we get our message to as many as we can on a personal level. Just in speaking to family in the past week I have learned of two extended family members with lung cancer and one that died Christmas day. I also heard a lot of the attitude that we are hoping to change. That is one of the reasons for my message. I envite you to read it and if you like do the same thing I am doing. Feel free to add anything I may have missed. Lillian My Message I am sending this letter to all of my family and friends with one simple request. I ask that you read it, think about it and pass it along to others. I make no promises of miracles in your life within a certain amount of days. My only promise is that you may become a part of a ripple of understanding. Just remember every tidal wave starts as a ripple somewhere. Lung Cancer!!! Two of the most frightening words there are!. Every year thousands of people around the world fight this beast. The disease itself plays havoc with a persons life. Add the stigma and attitude that accompany those words and often the beast becomes twice as deadly. Lung cancer is one of the largest killers in the world. Every year it takes more lives than most other cancers combined yet research into the causes and treatment are the most under funded. Why? Sense smoking has become associated with lung cancer it has become known as a smokers disease.That is very misleading. A large percentage of people who develope lung cancer don't smoke, never have smoked and have never been exposed to excessive amounts of cigarett smoke. Of all the people who smoke 15 % will develope lung cancer. What protects the other 85%? I am not saying that smoking does not play a part in developing lung cancer. I am certain it does just as asbestos and radon do. Could not all of these things only be triggers not the cause? No one knows because of the lack of research. Lets say you have 100 people in a room with one large bowl of potato salad. If 30 of them become extemely ill you would investigate. If you found out that 15 people ate the potato salad you would investigate more. Upon learning that only one of the people who had the potato salad was ill would you assume that they all had food poisoning? My example may not be the best but it is close to what has happend to research into the causes of lung cancer. If the cause is never known for sure how can a cure be found? There is also another side to the problems caused by attitude. The survival statistics are very low. Because of that most people hear the words and think of death. That attitude can lead to behavior that keeps the statistics low. That happens for 2 reasons. Hope is taken away and the very people that a person with lung cancer has to trust their life to have little belief that a person can beat the beast. With any other sickness encluding other kinds of cancer doctors face it with the attitude that it can be beaten. They are cautious with treatment and will not give any medications that could be detrimental. Lung cancer is a different story! When I questioned a professional about giving medications that were advised against or mixing medications that were warned against I got a very frightening answer. I was told that once lung cancer is diagnosed all precaustions are no longer considered. I can not help but wonder if this were changed or these deadly coctails listed as the cause of death once in a while how much would the statistics change? While searching for a way to make a difference and change these attitudes as well as help me to handle my own loss, I came across a message board called "lung cancer survivers for change". There are many loving and wonderful people there. We share fear, triumph and heartache. We console those of us who have suffered the loss of a loved one as only those who have been there can. We have many things in common. We are all survivers. Some are long term survivers for many years and others like myself are caregivers who have lost a loved one. Many are still engaged in the hardest battle of their lives either as the patient themselves or loved ones who are being taken along for the ride. We have no funding yet our group works relentlessly to get the word out and change the stigma and attitude toward lung cancer. We send letters to congress and the media requesting more research funding and support for changing these attitudes. I personaly want to carry it one step further. I believe there is a need to reach out to people on a personal level. That is the reason for this letter. We have at our fingertips the fastest medium for sending information. The internet and spacifically email. I am asking you to pass this letter along. Help me start a ripple. Then maybe somday you or one of your loved ones will have a better chance of survival should you ever hear the dreaded words "lung cancer"

HI Dean Your post really caught my eye but it has taken me a while to decide exactly how to reply to what you are going through. I like everyone will tell you that I too have my late night (and sometimes middle of the day) ramblings and sessions of what ifs and all of the other things that go with it. Unlike you I can not understand totaly because I have so far been fortunate enough not to know cancer from the same view that you do. Johnny on the other hand did. I saw what those doubts and yes fears did to him. It was not pleasant for either of us. Johnny grew up during the deprsion in a family that was very much tied to church and religeon. It left a permanant mark on him. He was taught about Heaven and Hell and that a person stood little chance to achieve one or avoid the other. Because of that and a past that many would call I guess the word would be in some ways unsavory (LIke you wrote in one of your earlier posts he had his time of drinking, 000 and very lose women) he had a tremendous fear of death dispite his strong faith in God. Add the anxiety with no support from either the docters or his family and he lived in his own hell here on Earth. I was there for him but as much as I love him there was not a lot that I knew at the time about cancer and the fear and anxiety that can go with it. I was a novice.. A well meaning novice but one just the same. When he would waken at night and not go back to sleep I didn't understand. Now I do. Often times I would watch him and in my heart I could imagine what he was going through but I had no support to help me better understand. This message board tho coming too late for Johnny has been a God send for me. This post of yours will do incredable things for anyone who finds themselves in the position I was in just a year and few months ago. You are an incredable and unselfish person. I hate to see you on this path as I do so many others. Still I can't help but think that there is a purpose for each of us being where we are. Life is not always fair but I believe there is a reason for everything. You are touching so many people. I have little doubt that the reason you are on the path that you are is so you can help others... By the way I want to add that your paintings are incredable. Your talent is very great. You sound so much like my Johnny in many ways. I think the two of you could have been great friends. Believe me coming from me that is the highest compliment I could ever give. God Bless you and keep you well. I don't think you can see the end of your road yet. You still have a lot more people to comfort and inspire with your loving spirit. My best to you and your wife during this Joyful yet painful season. Lillian

Mo wonderful news. Thank God. Hope to see more postings with the same good news. Lillian

I read what all of you say and I can tell you that I have experienced the same things. I get so tired of people telling me to get on with my life or that Johnny wouldn't want me to grieve for so long. How do they know what he would want? Most of the ones who say that never knew him! Then you get the same .ones saying that they know how you feel What a crock that is. How could they possibly know having never been where we are right now? I want to talk about Johnny. I want to relive the laughter and the love and even the pain. They are all that I have left of him. Don't you feel the same way?? Don't you get upset when you try to say something about the one you lost and everyone acts like they want to say" oh no not that again"? I posted this poem once before but again I think it goes well here. It pretty much says it all. Someday maybe we can be lucky enough to change not only the attitude about lung cancer but the attitude of others toward our loss. Until then we have only one another who will know and care how we really feel. Lillian The Elephant in the Room. By: Terry Kettering There's an elephant in the room. It is large and squatting, so it is hard to get around it. Yet we sqeeze by with, "How are you?" and, "I'm fine"..... And a thousand other forms of trivial chatter. We talk about the weather. We talk about work. We talk about everything else--except the elephant in the room. There's an elephant in the room. We all know it is there. We are thinking about the elephant as we talk together. It is constantly on our minds. For, you see, it is a very big elephant. It has hurt us all. But we do not talk about the elephant in the room. Oh, please, say her name. Oh, please say her name again. Oh, please, let's talk about the elephant in the room. For if we talk about her death, Perhaps we can talk about her life. Can I say "Barbara" to you and not have you look away? For if I cannot, then you are leaving me Alone....... In a room......... With an elephant.

Christmas: Disappointed and enlightened I want to reflect and share with all of you my Christmas and the profound truth that it taught me this year. I found myself looking forward to Christmas this year dispite the pain of loss that still lives in me from losing my Johnny. Being so far away from my children and grandchildren and knowing every minute what they would be doing left me feeling so lonely and I have to admit feeling sorry for myself. I told the saga of my Christmas tree and what I went through to get it. That was a very important step for me in my quest to have a "normal" Christmas. Having a large family dinner was out of the question sense there is so little family here but we did plan a holiday dinner at my nieces house with just her family. On Christmas eve I made cookies and candy and a cake then set out for her house. She lives just three and a half miles from here but when you are alone distance really means little. Because I am still learning the weather and the road I decided to spend the night of Christmas eve as well as Christmas night at her house. I would be with family and not be alone. On the night of Christmas eve she brought out all of the gifts that she had bought and handed them out. She had more for me and that made me cry. She has given so much to me already. That makes my feelings and the things I want to say even harder. I want to explain but not be critical of her way of life when I know that it is people like her who do more to show the real spirit of Chrismas than most people ever dream of. Still I found myself very disappointed with our Christmas. When she first moved here a month before I did she sort of adopted a family that was here. She had known the man sense he was a child and set out to help him find his way in the world. He had just gotten out of prison. Until she got here she had no idea that he had a woman he was living with who had 3 children. They were homeless and destitute. She made it her mission to not only feed and house them but give them the Christmas that they would never have had otherwise.. She spent thousands of dollars to help them find a home, transportation and food to see them through the month. She also bought Christmas gifts for their whole family. Just a few days before Christmas the woman did something that devistated my niece and left her depressed and angry. She decided to have nothing else to do with them because she had been betrayed in the worst possible way. Adding that to the holidays that she remembered with her husband( who died 4 years ago) left her depressed and feeling guilty because she could not accept the way that woman had treated her. Christmas morning found her in the worst mood and feeling sick because of it. Our day just started out all wrong and it got no better as the day wore on. Luckily for me I found one ray of sunshine. Her phone had been out of order for several days. The phone company was supposed to be at her house Christmas eve and fix the phone. They never showed up. My cell phone does not work at her house. I have heard it is because of the iron in the hills but suspect too that the distance from the tower is too great. Her phone had worked for a short time Christmas eve and that gave me hope. I was to call my children and talk to them and my grandchildren Christmas morning. I awoke early and went to the phone. It was out again. I was miserable and so unhappy. I felt so alone even tho I was at her house with her family. I needed the connection to my own family and there was no way to get that. The road was just too icy to take the chance of driving it with my lack of experience. I took my dog for a walk and found myself looking out at the creek and the beautiful evergreens all around. I wanted so much to feel that sense of peace that I have searched for but that morning it was gone. In desperation I saw myself standing there with my life so unsettled and the pain of so much loss. I was really feeling sorry for myself. I started talking to Johnny. I told him how lonely I was without him and how much I missed my family. I asked God why had I had to suffer so much for such a short time of happiness. I begged Johnny to please find a way to let me know that he is still with me. With a heavy heart I went back to the house where everyone else was still sleeping. It was about 9:30 when a knock came at the door. It was Christmas morning but standing there was the telephone repair man! Somehow I felt that my prayers had been answered and once again Johnny was coming through for me when I was in such desperate need. Whoever heard of telephone repairs on Christmas day? I finally got the connection that I needed with my family and felt much better. I am a person with time schedules and a list of things to do. When a holiday comes I have every thing planned and follow through on my plan. While I was married to my ex husband I was responsible for cooking Christmas dinner. It was a job that I had done with joy and a sense of giving to those that I love. Our meal was usually around noon with the rest of the day for dessert and snacking on the left overs. I waited and waited Christmas morning for her to be ready to start dinner. I refused to eat anything so as not to spoil the big dinner we were to prepare. Time passed and the meal was still waiting to be prepared. I became more and more anxious and more depressed. I also felt guilty for feeling so unappreciative to her for all she has done. My stuborness kept me from eating anything but a few pieces of candy. By the time she finally decided it was time to cook it was 1:00 pm. The meal preperation took a while and while it was cooking she went outside to the creek to walk and find her sense of peace. To make a long story a little shorter it was 8pm by the time our Christmas dinner was ready. By then I had eaten candy and popcorn in a effort to fill the emptiness in my stomache. I know now looking back it was not the lack of food that upset me but going against the traditions that I had come to expect. My stomache was so upset that I ate little of the meal and spent the rest of the evening on the sofa trying to calm my upset stomache. Because of all of the drama going on with the family that she had helped she had never gotten a Christmas tree and I had one at home decorated and waiting to be enjoyed. My Christmas left me heavy hearted in so many ways but then too it showed me that no matter what it is what is in my heart that really makes each day what it is. I learned one more lesson in my quest for learning about myself and what the meaning of life really is. I have a long way to go but now I am starting to see that the time on the clock is not what is important but the time that is in our hearts and joy that we can hold for a split second or for eternity. I wonder how much of that choice is ours. When I arrived back at my home last night there was a deer waiting in my front yard. Such a beautiful sight for my eyes and heart! This morning when I took Misty out for her walk I saw such beauty all around me. The sun was peeking through the clouds and the frost had started to melt away.. Everything looked so clean and fresh. The hills around seemed to sparkle as if they had been scrubbed and cleaned for a new day. Off in the distance I could hear the sound of the creek as it makes it's way relentlessly toward the sea.. The hills are covered with evergreens of so many different shades of green that only an artist of the highest ability could even begin to do the scene justice. I look at all of those things and once more I feel that there is a purpose for me being where I am at this time. Somehow I know this is all a part of my learning and God's plan for my life. I don't really hope to find healing but I do hope to find renewal. Renewal of my appreciation for the gifts that God has given to me and renewal of my soul and spirit so I can appreciate the beauty that surrounds me and make me aware of just how much I have been given. It cost me dearly to have the little time that I did with my Johnny but I would never trade it for anything. Finding eachother as we did at that time in our lives when we were both so desperate for something to hold on to could not have been coinsidence. Especially the way that we found one another and the circumstances that led to it. Some day I will tell that story but for now I just want everyone to know that Christmas like every other day can be a day of learning. We may be heartbroken or disappointed or both but in the end we are learning something about ourselves and God's gifts to us. My Christmas was not what I expected it to be but it was one that I will never forget. Life can be a very tough teacher but the lessons learned when we least expect them can help us to grow in a way that only God can see. I hope that all of you had a good Christmas and that you found some sense of peace. I hope too that you too learned a new lesson in life. I wish you peace and health for the coming year. I pray that we will all still be here next year but our words will be a celebration of victory instead of consolment to those who are new to the pain of loss. Life is not always fair but it would be so much less fair if we did not have so many wonderful people in our lives. People like we have found here and learned to depend on as we share our heartache and trauma of everyday life. That is just one more of the many gifts that we have to be greatful for. In time I hope that I will learn to be more appreciative of what I have and not worry so much about the changes that life has forced on me. My best to all of you. Lillian

Kim My heart aches for you. No one knows the pain that can come so quickly except those of us who experience it. Being Christmas eve makes it so much harder but too we have to remember this is the time of peace and miracles surly your mom is in the arms of God even now. Please stay here with us. You are a great part of this "family" now. God bless and hold you as you face the days ahead. May His love and peace give you the strength you need to get through the next few days and then the others ahead. What you told your child is so very special. I know it will make it easier for them. You were very lucky to have your mom and your children are very lucky to have you. Don't ever forget that. My love to you and all of your family. You are in my heart and on my mind. Lillian

I too say prayers for you and your whole family. May God show his mercy and love on your mom as well as all of you. Please keep us posted. Lillian

My heart breaks for you. I wish you to know the comfort of God's love and to remember that your wonderful Dad will never be far away. MO posted a poem called Christmas in Heaven. Please read it. I hope it will give you some peace. Lillian

I have a message for those of you who are new here. There are some things that you need to know as you embark upon this journy known as lung cancer. This will be the hardest battle that you will ever fight. It takes so much from you. It will make you cry in pain and fear as well as frustration. It will make you curse fate and at times even God. Your heart will be broken over and over. Many times you will feel like you are alone in this world and no one understands. Especially if your battle ends as mine did in far too short a time. Fortunatly you have found this board. I was not so lucky at the time I fought the battle with my Johnny. You will find so many caring and loving people here. Lung cancer takes it's toll quickly and long term for those of us who travel this road of fear, pain and uncertainty. It will take everything you are and have. Just when you think that you have no more to give it will demand more. You will find out then that you can reach down into the depths of yourself and find more to give. There is also a lot that you will recieve without even knowing it for a very long time. You will learn the depth and power of love. You will find a side of yourself that you never knew existed. You will experience love in every way from pain to the most high reaches of it's glory. You will be forced to learn patience and many times your patience will be tried. You will find a faith in God or whoever you believe in that is the strongest it has ever been. Often without realizing it you will find yourself either thanking God or begging him for help. Never again will you see someone in pain either physical or emotional and turn away. The depth of your compassion will amaze you. You will know other peoples pain and they will know yours. All of your beliefs will be tested and many will change. If and when the battle is lost you will find a belief in another life. There is no other way that you can go through these times without learning so many things. Cancer is a mean and nasty demon. It offen strikes when life is finally going your way and giving you what you have worked and hoped for all of your life. The person who has cancer will go through many stages both physical and emotional. You will be taken along for the ride. There will be times you want to stop and get off but the rollercoaster is moving far too fast. I have suffered much pain because of cancer and what it cost me with the death of both my mother and the love of my life. I will never be the same person I was just a few short years ago. In many ways that is hard to accept but in many others it makes me proud to see the person that I have become. We question fate and God but I have come to believe that we are given this road to make us grow. To what purpose who knows. Ours is to accept and maybe in time we will know the answers. God Bless each and every one of you. The road ahead may be long and frightening but it is a road that you will go down and someday the end of your road will be appearant. Always remember you are not alone. God is with you and even if you do not believe in God know that there are many of us here who have been or are where you are going. Together our burdons will be lighter than they would have been otherwise. Remember to stay positive and above all remember that love is the one thing that this disease doesn't destroy instead it makes you so much more aware of it's existance. Lillian

MO With those prayers answered we now send prayers of thanksgiving for your good news. May it continue to be good for you and everyone here in the coming year. Merry Christmas to all. Lillian

Thank you so much. I'm sure there are a lot of us here who need that poem right now. It is lovely and heart warming. Merry Christmas to you and thank you for that special gift. I will copy and save it. Lillian

My story is about learning to do alone the things that have always been done with someone else. Christmas is especially hard and the memories that go with it from over 40 years of marriage ended in divorce were bad enough but adding Johnnys death so soon before we got to share even one Christmas was the hardest thing this time last year. Buying a Christmas tree had always been a family thing to do when my children were little. We would go from one lot to another searcing until we found the perfect tree (of what was available) or until my husband got tired and made us settle on one.. Last year I found myself 3,000 miles away from my children and grandchildren for the first time ever being seperated from them. Johnny died on December 2nd before we got to get the tree or have the kind of Christmas that we wanted to share after so many years of seperation. Within a week of his death I had to do my Christmas shopping so I could mail to my family. Needless to say my heart was not in it. I had already bought decoratiions for our tree and it just seemed like I should have a tree and be able to tell my family about it. I bought pretty much the first one that I saw and decorated it. I sat alone at night and looked at that tree dreading Christmas morning when I would awake all alone with all of my dreams gone. It was a sad and lonely Christmas morning and that tree just seemed to mock me with it's bright lights and ornaments. I was glad when it was finally time to take it down. As all of you know I just recently moved to this beautiful new place. I actually rushed so I could be here near my niece in time to celebrate Christmas with her and her family. I couldn't face it alone again. Last year I had cooked the dinner I had planned for myself and Johnny and took it to his son's family. This year I wanted to prepare dinner with family. I also wanted a Christmas tree. This time because I really want one in my home and I feel that this will really be the tree that is for me and Johnny. I want it up with lights and all it's spledor so when he peeks in to check on me he will see it. ( I do believe he does that a lot). I got here to the heart of evergreen country and had several offers to get me a Christmas tree. No one ever showed up with one. I watched the days pass and was starting to get desperate. My one trip to town was crowded with so many errands that I didn't have time to look for a tree and get back up the mountain before dark. I came home treeless and disappointed. I got more offers but still no Christmas tree!! Finally I made up my mind. If no one would go with me today I would go alone for the first time. I would not come home without a Christmas tree. I was so worried about that drive alone and the fear of getting lost in a strange place. I almost backed out but my desire for a tree along with my determination (some would call it stuborness) would not let me. Armed with my new cell phone that actually works here, a map and directions from the computer I set out a little before noon.. I needed a few items from the grocery store because they are saying we will have snow after Christmas and I know I won't drive that road then. That will be a new experience for me too. I lived in Louisiana for 32 years and snow was very rare. Anyway I was on my way to find a Christmas tree. Miraculously I got to town and went right to where I needed to go without getting lost. I found a Christmas tree lot and the prices were cut by 50% because it is so close to Christmas. I found the perfect tree and even negotiated the price lower with the seller. Every Christmas I had seaarched for a certain tree and never could find it or afford it had I found it. Today luck was with me ( I think Johnny was too). I bought my tree and they tied it in my trunk. After a stop for a few groceries I was on my way home. I got here around 2:30 unloaded my groceries then wrestled the tree out of my trunk. When I got to the steps with the tree I found that I had a problem. It was too heavy and too big for me to carry up the steps!! I squeezed past it and standing on the step above hugged it and step by step carried it up that way. By determination or stuborness witch ever it was I got the tree into the house. Then I had to screw it into the tree stand!! Ouch my aching hands! With a lot of effort and a determination not to let it beat me I finally got my tree up and decorated. It is in a big bay window and looks like it was made for the spot. I am sore and tired but happy. I proved that I could do it alone and do it right! I was sitting here tonight after I finished with all of the decorations and a thought made me start laughing. Lately I have been seeing myself a lot as if it were someone else looking at me (probably Johnny). I started seeing in my mind me hugging that tree up the steps and I could just hear Johnny laughing and his words that he always used when I accomplished something that he didn't think a woman would do. He would laugh and say "She sure is one hell of a woman" and he did that with such pride in his voice and in his eyes. So tonight I look at my tree and I say " finally Johnny we have our tree and we will share this Christmas. Merry Christmas my love." So you see it is hard learning to do things alone but there are a lot of rewards in it too. I am learning more everyday that I live in this beautiful wild and wonderful place. The pain in my heart is still there and it always will be but I can remember the good times now not just the pain. Maybe that is what this Christmas tree is all about and maybe that is why I had to come here to renew. Johnny gave me the chance for a new life. When he died I thought that I had lost that life. Now I see it again as the gift that he gave to me and I know that somehow he will share that gift with me. I believe and that is so important to me now. Merry Christmas to all of you. Never think that you are alone. YOu may not see your loved one any more but they are there guiding you in everything you do. How else could we survive if they were not??? Lillian

Prayers for a great cancer free New Year and many more to come. Lillian

You are in my prayers. I am praying that all test come back good. Start the year cancer free!!!!!!!!!! Lillian

Christine I am so sorry for your loss. It is hard any time but this time of year seems all most more cruel. My thoughts and prayers are with you and your family. May you have the strength to endure. Lillian

Hey I can't draw either but the logo sounds like a great idea. I remember when I used the term cancer victim. I was reminded that we are cancer wariors. How about a warior in armour fighting a beast with cancer printed on the beast. Then too maybe something like Daniel in the lions den. Some way to show the battle and that progress is being made. Maybe show how THE BEAST is waiting to recieve the final blow. Just a few thoughts. Now if someone can draw them and see how they go over in print. Maybe we can have a contest with people adding their pictures or ideas and vote to see witch one to use. I'm sure there are a lot more ideas to consider it is definately worth the effort. Lillian

Hi It just occured to me to mention this. In all of the talk about getting congress and the media to pay more attention to lung cancer one thing has been missing. We all know that smoking can contribute to lung cancer. We also know that there have to be other causes. I think that once researchers linked smoking to lung cancer they quit looking for other causes. In almost any disease the only way to find a cure or sound treatments is by knowing the CAUSE. Research into other causes of lung cancer needs to be done. We need to make a point out of that topic. I have lost 2 people that I have loved to lung cancer. Yes they both smoked but what if smoking was NOT the only reason they got lung cancer? No one will ever know. Yes we can all agree how bad smoking is for us but we also need to realize that another cause can go hand in hand with smoking.. How will they ever make any progress if they don't start trying to find ALL causes not just smoking? What really worries me is that Pharmasuticals are one if not the major industry in the world. They make billions of dollars and I believe they also get grant money to do research on cancer (I may be wrong about that). My point is that if they are not forced why would they want to find a cure? Even if what they find has a huge price tag it will never compare to what they are making now. If you have trouble thinking of it that way just look at the oil industry. How many cars do you see that get 60 miles to a gallon or do not run on gasoline? I am sure that they have been invented but if put on the market the oil industry would suffer and our need to police the world would take a major hit too. Money talks and people listen now it is time for us to talk and make someone listen. People and their lives are more important. In the next letter writing effort why not mention that we want, no we demand more research into the other causes of lung cancer? By the way I need to mention that my sons make their living from the oil industry. My views are not because I have a personal battle with the oil companies. Lillian

Great idea Dean. Let's all see what else we can come up with. Who knows there has got to be a lot of untapped talent in a group this size. Lillian

Katie I just read your post stating that you may set up some shopping things to raise money. You mentioned greeting cards. I have a couple of poems that just may be good enough for a couple of special cards. One for a loved one away at Christmas (I wrote it for my son in 1990 while he was in Saudi) and one that I wrote for a friends wedding. If you do that do you think you could use these? I have been looking for something worthwhile to do with some of my poems. Here they are what do you think? Is it possible that you could use them if you go for that idea? Lillian My gift to you When you awake this Christmas morn May your faith be born anew This is the wish I make especially for you May you always walk in sunshine No matter where you are And think about my love As you would a shinning star You may not always see it Or hold it in your hand But it will always be here shining I will always understand I have no other gift for you Except this little rhyme And a love that never ceases Through the endless rhelm of time Written for my son while he was in Saudi in 1990 then sent to Johnny for Christmas 2001 A Wish Friends My you walk along the road of life forever hand in hand And always know the magic of a love that is so grand My dark clouds never threaten and the rains be soft and clear And life bring all the pleasures without a pain to bear If off in the distance some trouble do you see Hold on to eachother and you'll face it clear and free Never doubt the power that love can give to you And gently through the ages love will itself renew The treasures of life are many and dreams can come to pass For you I wish the joy of a love that will always last Written for friends before their wedding in 1980

Hello Everyone I just got my computer back on line today after my move. I was very anxious to return to this board. It saddens me greatly to see what has happened in the short week that I have been away. I have spent the past several hours reading and catching up on things. My heart breaks for those of you who have suffered new losses. I feel the pain of the ones who have someone newly diagnosed or have been diagnosed themselves. This is a heartbreak that no one deserves. I pray that the new year will bring us closer to a cure and that those of us suffering the pain of loss will find direction for our lives. I am sorry that I missed the letter writing campaign. I think it is a great idea and wonder what is to keep us from doing it weekly. If we bambard them often enough sooner or later someone is bound to listen and respond. God knows that I am well aquainted with the harm that the stigma and attitude can cause. I will add my cyber voice to all of the others whenever you decide to hit them again. I hate too to see this has become a place of controversy. I hope the problems can be worked out in a loving way and this board can get back to the job of love and support. It means so much to so many people. It seems like forever sense I last wrote here . I guess that is because so much has happened sense then. My last day of work was on Friday December 5th. The week had already proven to be so hard. Facing all of the anniversarey dates from last year and Johnny's final days and death all but destroyed me. I relived the pain and in some ways it was even worse for now I know the finality. I can no longer tell myself it is a nightmare and soon I will awaken. It was really hard to leave my job for the last time. The work was really putting a strain on me both physically and emotionally but I got something very spedial from some of the people that I cared for. They all seemed to like me and because of that I was able to turn off everything else when I entered their rooms. They became my total focus and in return they gave me their love and apreciation. On more than one occasion I heard them talking about me and how much they liked me as well as how good I was to them. They made me feel worth while and reinforced the feelings that Johnny gave to me about my self worth. I realized that just being me could be special to someone. For me that was a very special gift. It was very hard leaving and knowing that I will not see any of them again. I was told that I should not tell them that I was leaving or goodbye because it may upset them too much. That was very hard. It made me feel like I was sneaking away from them. Just a couple of days before my final day there I got some bad news. It really upset me and even now thinking about it is hard. One of my special ladies died. She is the one who I had felt so close to. She is the one who I held the day she had those frightening attacks and told me that she thought she was dying. I remember when I would walk her back to her room after dinner how she would always ask if I would come back and see her again that night. She would hug me and smile for me. The next night after that attack is when she fell and broke her hip. She was on the gurney on the way out to the hospital when I passed by her. She gave me the sweet little inocent smile and reached out and touched my hand. That was the last time that I saw her for over a month. When she came back to our skilled unit I took Elsa to see her one day but she was not the same. She barely opened her eyes and I am not sure that she realized who we were. She was truly one of the special people who touched my heart. That night after Elinore died I found out that Chris was found unresponsive and with no pulse. They managed to waken her and take her to the hospital but she was sent back to skilled unresponsive to await death. I could have gone to see her but I didn't. I want to remember her like she was. I can still see her with two pairs of pants or two bras on.. She always carried her purse under her arm tho there was nothing of any consequence in it. She wore shoes that were pointed and a little tight so she just shuffled from one place to another. All of her clothes seemed to date her to a time forty years ago. She remembered very few names but she knew me. She always gave me a hug when I put her to bed and she would talk to me about things. Mostly what she said made little sense but she felt free to talk to me. She too was one of the most special people that I cared for. I know that by now she has probably died. That is something that I really don't want to think about. There are so many other special people there who earned a place in my heart. I gave a little extra to them and they in turn gave me so much more. As I move on to my new life I hope that what they gave to me will help me grow to be the person that God intends me to be. The person that Johnny loved and admired who seemed to get lost this past terrible and painful year. I will miss too the people who I worked with. Tina our nurse is a very loving and special person. She too has moved on now. She found it hard to live with the way the company ran things. Liz made me cry that last day when she gave me a card and Christmas gift. I didn't expect that and it was hard to say goodbye to her as well. Christina gave me a card with a special letter saying how she enjoyed our talks and our friendship. She too will be leaving soon. She is young and has a lot to learn but she has a good heart. I hope she makes it big in this big world and finds her own special place. Debbie is Debbie, loud and funny and often very hard working. She too takes a lot of pleasure out of knowing that she is doing something for the forgotten ones. Yes I will miss them all but I know it was time for me to move on. Somehow there is a way of life waiting for me. I'm still not sure what I am supposed to do but I do feel that my writing will play an important part in the rest of my life. With a little luck maybe I can find a way to help make a living with it. Maybe too I can do something positive that will make Johnny even more proud of me. I want to find a way to honor him and the love we shared. I feel that can only be accomplished through my writing. I had only 3 days to pack up everything and get ready to move. I managed pretty good and by the time the movers got there on Tuesday the 9th I was ready. It took them about 2 hours to pack it all up and leave with my things. I felt kind of lost watching as my things left without me. I was excited and frightened about the move. There was just so much that I didn't know. Still tho most of my questions have been answered I have a little uneasiness. I just hope I can make a living here. As for the rest of it I am in love with this place already.. Maybe at last I have come home to stay. It took us nearly 6 hours to get from Vista through LA to Bakersfield. A distance of under 200 miles. The rest of the trip went smoothly even tho there was a little rain along the way. Most of the traffic was trucks but Lance is a good driver and I was really about as relaxed as I can get while traveling. We arrived at Pat's(my nieces) house around 8 am on the 10th. I was exhausted from having no sleep but managed to stay up until late enough that I fell asleep easily and slept until a reasonable hour the next morning. I came here on Wednesday to see my trailer. I was and am pleasantly surprised. It is so much larger than the one that I was living in. It is really a nice trailer. I wonder if I will ever be able to pay Pat back for all she has done. She says it is a gift but I feel that somehow I will find a way to repay her. She spends so much money on other people. She truly is a person who cares enough to do something instead of just talk.. Sometimes I find her too giving but then it makes her happy so I guess that is what really matters. I don't know if I can think of it as a sign from Johnny that he knows and approves but I hope that some things point to that. The very first time I came here there was a donkey not far away from my trailer. I saw it so easily but have not noticed it sense then. Pat told me too that her neighbor has roosters but I have yet to hear them crow. The biggest thing that makes me wonder is when she told me today that she found out there is a family of wild quail that live in the field behind her house!! Those things are all part of the signs I had asked for when I moved from Washington to California.That along with the similarities to where Johnny lived make me feel like I am really where I am supposed to be where he wants me to be. I wish he would show himself to me again or touch me once more. Maybe I am just too anxious for now. Maybe in time he will be with me in that way again. For now I just have to trust that he loves me enough that he will always be near. The movers brought my things Friday but I didn't move in until yesterday.. I had to wait for the propane to be delived so I would have some heat. It is very cold here right now. I got an electic heater from Pat and it kept it warm enough that I could come in here and work. Because of that by the time I moved in yesterday I had everything unpacked and most of it put away. I still have a few touches to do but most of the main work is done. Now it looks like a home, my home! Hopefully I will get into Redding in a few days to get some supplies and a few other things that I find myself in need of.. I want to get a Christmas tree. Now it is time to try to describe this place that I now call home. There is such beauty here such serenity that I only hope that I can paint a picture with words that will do it justice. When you leave Redding on 299 you come through a populated area with a few businesses. After a ways the business area turns into neighborhoods and then the houses too become sparcer as you leave Redding heading west. You cross the beautiful Whiskeytown lake and after a couple more miles you see the sign that points to French Gulch. The road Trinity Mountain Road is a small country road. There are quite a few curves but it is not what I would call a mountain road. It is not a road built for high speed but it is a road that lends itself to leasurly driving anyway. You have to watch as you go along to make sure that if there are any deer on the road you see them in time to slow and let them cross. There are hills on both sides of the road and a creek that flows on your right hand side. It is Clear Creek one of the longest if not the longest in the state. I live about 3 miles from hiway 299. Right here it widens out to be a valley more than a gulch. I would guess there is about a quarter of a mile between the hills. The park itself is on flat ground with a view that is breath taking. You can look in either direction and see the hills covered with evergreen trees. There are not as many trees of color here as there are in Washington but I see a lot of bare trees that I am certain will add their beauty when the season is right. Looking back toward 299 you can see a mountain with snow on the top. It is not a really high mountain but high enough to call a mountain not a hill. The manager here told me it is named Bally. Right across the road from me is a large lawn with a few trees. Tom the manager told me that on warm days the deer like to come there to sun themselves. My home is set on a very large lot. My nearest neightbor lives across the street from me and on the other side is a vacant space. The next neighbor over on that side is about 50 yards away. Almost all of the homes are decorated for Christmas and it just blends so well with the setting.. When you leave my house you start to climb just a little. I think the elevation where Pat lives is around 1700 feet. About a half mile from here is the town of French Gulch. What a town that is. There are a few houses on the outskirts of the town and in town there is a hotel with what I would guess to have between 5 and 10 rooms. There is a dining room in the hotel that is open to the public and serves as the towns one resturant. Across the street from the hotel is a bar where you will see one or two cars parked most of the time. A little ways further is the post office. It shares a building that once housed a grocery store but that is closed now. A sign on the front of the post office says "established in 1865". I stopped there today and got my post office box. The park does not have mail delivery so each resident gets a free post office box. One lady runs the post office and she knows all of the addresses and most of the people by name. While there I met another lady who introduced herself and told me that she just moved into the park here too. After you pass the post office there are a few more houses then you are out of town. It is about another 2 and 1/2 to 3 miles up the road to Pat's house. The hills are closer there so you don't see as much sun as you do here where I live. I am reminded of Johnny talking about the houses on the east side of the mountain never getting the sun. She has a small back yard then behind her the hill rises. It is not unusual to look out her kitchen window and see one or more deer at any given time.. Her front yard is much larger and across the street her property continues. There is about 10 feet then an embaknment with a path that goes down toward the creek. There is about another 50 feet till the creek the distance depending on when and how much it has rained. Most of the time it is very calm and flows gently past. The man next door put rocks in one section to make a small rapids but other than that the creek flows gently. That is it is gentle until it rains. The other day I saw it turn into a raging river with rapids the whole length of it. Normaly it is about 20 feet across but after the rain it looked closer to 40 feet. The sound and the flow are just mesmerizing. Pat calls that her church and it is easy to see why. A few feet behind the creek another hill rises. Now that I have tried to tell a little about what it looks like here I will see if I can find a way to tell about the feeling here. There is such a sense of belonging here. This is the Earth as close to what God intended it to be as you can find. It is beautiful, unspoiled and so very gentle yet there is a wildness about it too. Just being here instills a sense of peace that has been very hard for me to find. The other night at Pat's I walked outside with Misty(my dog) and the first thing I saw when I looked up was a shooting star. I felt like it was a welcome sign to me. It looked as if it brushed the hill top and if I had reached up at that time I am sure that I could have caught it. The stars all look so big and so bright. I feel like I could reach up and pluck a handfull. Every time I drive I see deer either on the side of the road or in someones yard. You are just as apt to see one in town as you are down by the creek. People out walking or the ones in their yards wave as you pass by. Everyone treats eachother as old friends even if they don't know you. Tho spread out over several miles there is a sense of community here. If you live here you belong. Everyone makes you feel welcome. Yesterday when I got home from Pat's there was a Christmas card and a note of welcome from my landlord Tom and his wife. He has been very helpfull to me and I am anxious to meet her. I am hoping that will be soon. I don't know what the future holds for me. Yet I am sure that I will find the answer to that here. If I am to write I can think of no better place for it. I can look out my window and get a feeling of renewing. I am hoping that my mind and my spirit will renew as time passes. I want to find the sense of peace and belonging that I had with Johnny. I want to feel that he approves of what I do. I know that he would love it here. The beauty and peacefulness of this place is the kind of things that he appreciated more than most people do today. Then too I see so many similarities to where he lived it is almost uncanny. It is about the same distance to Redding as it is from Copalis to Aberdeen. I live about one half mile from town and the post office. Tho there is a post office the same distance at Copalis there is no hotel. There was a resturant but that closed after Johnny died. The population of the community there is close to what it is here. The river flowed about 100 yards behind Johnny's trailer and now I live where a creek that could be called a river flows about 100 yards away. This is a community where most people know one another and take the time to talk and listen. Most of all there is just so much of the Lords beautiful nature here. To Johnny that was paradice and I am beginning to see and feel what he did more every day. I live in better conditions than he did because I am younger and more able to work and also because I have Pat here and she is doing everything she can to see that I am comfortable and cared for and about. I just wonder how differently things would have been for Johnny had he had those things in addition to the place that he loved so much. I thank all of you for bearing with me. I know that I tend to go on a lot. I am hoping that in disecribing the beauty and peace here it will give a part of it to all of you. I am looking forward to Christmas again. Not as a time for gifts but a time to honor and thank Christ for his sacrafices. I know that we all have battles to fight. Some will win and others will lose but the biggest battle of all he fought for us. The fight for our souls and eternal life. That gives me the one thing that I need most now as do all of you HOPE. I know that none of us are perfect but I believe that Christ died for us not because he expects us to be perfect but because he knew that we could never be perfect. I close with heartfelt wishes that all of you here will find a sense of peace at least for a little while. My love to you and God bless each and everyone of you. What you give is truly a gift from God. Lillian

Dearest Ann I am so sorry to see you going through the pain of the aniversary dates. I wish I could have been here for you as you were for me just a couple of weeks ago when I faced the same things. Unfortunately with my move I just got my computer up and running today. I understand so well how you feel. The pain in some ways is even sharper than it was last year. At that time we had the shock to cusion some of the pain but now reality hits with a vengence. I still have some very bad days but in some ways it has gotten a little easier sense those aniversary days are past. The pain never really goes away but I am learning better how to cope with it. I think too that so many changes in my life right now has made the time harder in some ways but easier too if that makes any sense. Once more I say that you are in my thoughts and I thank you again for being there for me at one of the worst times of my life. My God smile down on you and make the holidays peaceful. I can not think of more to ask for you or myself. Lillian

I will be leaving here tomorrow as I said in my other post. I want to thank all of you for your prayers. I want to thank all of you too for your sugestions about my need to see that Johnny gets justice. I have gone through all of the proper chanels and nothing ever came of it. I have decided to make me more effort and leave it go for a while. I am not giving up just taking time to get myself over some of the changes in my life and get my emotions more in hand. I have written a letter to the newspaper in Olympia. I'm not sure if they will do anything with it but I have sent them a lot of information. I sent copies of my complaints and the denials that I got. I also sent copies of the letters that I wrote in response to their denials with information to show why they are wrong. I have obtained copies of claims filed against the one docter that were dismissed and also the citations against the nursing home. All of that information I sent to them. I am hoping they will use it. If not I will try someone else later. For now I have to give it a rest. I will continue to tell people what happened and warn them about the things that I saw. I don't want anyone else to be as trusting and gulable as I was. It is just too dangerous. Thanks for your good wishes and prayers as well as your kind words. I will be off line for about a week. Can't wait to get back and hear how all of you are doing. Bless all of you and keep up the good work and positive attitude. Lillian Letter that I sent to the Olympian Dear Editors I am sending you some information. It is all public record but unfortunately the public seldom gets to see it. There are papers on a claim that I filed to the medical board. There are the papers I filed, their replys and my additional information. There are also letters telling them with information to back me up of why their decision was wrong. Dealing with them leaves me angry and frustrated. The system failed a very good man and I witnessed it. Encluded in the papers are copies of reports that I got concerning one of the doctors. I searched and found a way to get them from the department of public disclosure. You will notice that all claims were refused. I find that very suspecious especially sense I saw his behavior with my own eyes. I think that any one who really stops and thinks will realize that no one will put themselves through the red tape and emotional trauma that filing a claim intails without just cause. There are also papers for citations that were handed out to the nursing home in question. Reading those should make you ask why were those claims acted upon on but not mine when they are about the same thing and during the same time period. I don't know if you will do anything with this. I just know that what happened to John was wrong and that treating it like it does not matter leaves the door open for it to continue to happen time and time again. Don't you think it is time to put "human" back into humanity? Older people and cancer patients are more than likely to be twice as vulnerable than children but they have few who will stand up for them and their rights. It is a sad mark on our society. Please consider these things. The information is here and I am sure this is only a small portion of what happens everyday of the year.

I want to thank all of you who have been so kind to me. My emtoional nightmare has seen a ray of sun because of all of you and your support. The day after tomorrow I will once more be moving. This will be the 4th time in a year and a half. I am hoping that starting over this one more time will give my life something fresh and less painful. It is very frightening to be going to a place that I don't know again. I left a job that was both emotionally fulfulling and emtoionally draining. The decision was one I had been thinking about for a while but when I made the decision it was very fast. Now I go on and hope that my decision is the right one. I need you to pray for me that somehow I will find a place that I belong and some peace for at least a while. Unfortunately I will not have access to my compter after tomorrow night for several days. It has been my life line sense Johnny's death and the thought of being without it agian is not a pleasant one. I hope I can get hooked up and back on line in just a few days. Just so many changes but sooner or later there has got to be a place where I belong. I pray that I am going to that place now. Thanks again. All of my best to all of you. You will all be in my prayers. I know what couragous people you all are. It takes so much courage just to face cancer and so much more to fight it like all of you are doing. One day it will go down for the count and never get up again. I hope that time comes soon and then you will all be champions and survivers. Lillian

Hi Ann I for one don't think you are losing it. I have had so many experiences sense Johnny died that I started writing them down. A lot of them were things that at first I told myself that I was doing without knowing. Then the experiences got stronger and harder to explain away. Others started seeing and experiencing things with me. At times I tell myself that they were not real because I need to believe so badly that I am afraid that I am wrong. There are times too when I have to admit that I hope that if I do start doubting he will send me another sign. My doubts are just pleas for him to confirm my beliefs again. I stayed in Washington alone for 4 months. I knew that sooner or later I would have to leave there. I was just so alone. Making the decision was just so hard that I kept putting it off. Finally when I made that decision I was very upset. I felt that I was leaving our home and the beautiful life we had together. I felt like I was deserting him. I asked him if he approved of my decision. I asked for signs from him to tell me if he approved and would come with me. I mentioned 3 things. Two that were special to us , a rooster crowing or a donkey braying or to see a robin. The robin was because I had only seen one in the months I lived there. I waited but never had any of the signs. I was very down and depressed. On one occasion when I was wondering what scent I would associate with him I got the strongest smell of coffee brewing. I knew that he had quit smoking and that he could not wear cologne because the smell caused him to lose his breath. He always had a cup of coffee in his hand. In the truck on the way to California 3 times in the middle of nowhere my nephew first then I smelled coffee brewing.. We had no coffee in the truck and there was nothing outside of the truck to explain the smell. I just said "HI Johnny". When we stopped over for 2 nights in Sunnyvale I stayed with my sister-in-law. Sunnyvale is in the heart of the Santa Clara Valley, what is now known as the silicon valley. It is very urban. On the second morning there I was in the bathroom when I heard a rooster crow. I found out later that there was one at one of the neighbors houses. To me that was the answer to my request to Johnny. He was letting me know that he approved of my move and would still be with me. These are just a very few of the things that have happened. Some were much more intense. I have no doubts that there is only death of the body. I believe that the soul and spitit live on. We may not be able to see them all of the time but they are always near. They watch and give us support and strength but they don't often interfer. We have to live out our own lives. I believe they lead us in the direction we need to go. We just have to make the final decisions ourselves. We often miss the signs because we expect them to be something too obvious. We just have to be more open and not look for them all of the time. I am guilty of that lately so I do not see as much as I want to but still I know that my Johnny is always with me. Lillian