[My Christmas wish]

I just want to wish everyone a very MERRY CHRISTMAS full of peace and hope

[thoughts and gifts]

I want to thank everyone for their responses. I have an experience I want to share that shows what I mean about getting back what you give.

I have really been having to struggle lately, emotionally because of the aniversary of Johnny's death and being away from my familyduring the holidays. I also struggle to make a living and quite frankly I have not been succeeding very well with either. I work hard and pass out at night but the pain never really goes away. I barely make enough money to pay my bills and sometimes I don't quite make it like this month.

There is one lady that I work for once every two weeks. It is just a two hour job that I started when I was working in town. I have to drive 30 miles to her house and on the day I go for her I miss at least half a days work here. Because of the time and distance as well as the price of gas I am actually losing money when I work for her. Because I like her so much and see a need in her I chose to continue. I save everything I need to do in town for that day and that keeps me from having to go another day. It all seems to work out alright.

Yesterday was not the best of days for me. I was lonely and worried about money. One of the companies I work for may have a job for me this weekend. I was wondering if I got the job how I would buy gas for the drive for that 3 days. I was also upset because the signs that I have gotten from Johnny seemed to have stopped.

I was in her bedroom making her bed when I heard a rooster crow That is one of the signs I had asked Johnny for when I left Washington to let me know that he is with me. I have been at her house every two weeks for the past 3 months and never knew that one of her neighbors has a pet rooster! That really boosted my spirits but I was not done with surprises.

As I was leaving she handed me a Christmas card. When I opened it there was a $20 bill inside Sense the work I do for her is never as hard as some of my other jobs I felt guilty about taking it. She informed me that she looks forward to my time with her and I have made a difference in her life. She has kids but no one who really understands what it is like to be alone after loosing her husband. We share a bond that has led to a friendship that I treasure.

I have several clients and they all share on thing. They need help with their house work and someone to spend time with them. If I could I would do it without pay but I am just not able to do that so I try to give just a little more. In the process these people who sometimes feel like they don't deserve anything better start to feel that they do.

Life is just so short and their are so many people who are alone or ill. So many people who get so low that they start to feel like life has given up on them so why bother. We have to look out for these people because someday we may have the same needs they do. Despite the fact that I can't do as much as I used to without being exhausted I am fortunate that I am still able to work. Even without my financial worries if I couldn't work I would just want to lay down and die. By making these people feel like they are worth the effort I in turn feel like I have a purpose and that gives me what I need to face each day.

In the end we always get what we give. Life is not perfect nor are people. Some people are very hard to give to but we just can't give up on them

Now I have to get ready for work. I wish all of you a pleasant day. Lillian

[just wondering]

I have just been wondering if anyone has heard from Norme lately. I haven't seen any posts from her for a while.

[Daddy is home....]

I am so sorry for your loss but happy that you recieved such a special sign. The signs may not always be as dramatic or as easy to recognize but the will keep coming, usually when you least expect them. I hope you can remain at peace. God bless you and your family.

Lillian

[thoughts and gifts]

Wow I didn't write this to start a controversy. On the contrary I want people to be nicer to eachother and not judge without considering what may lay behind a person's behavior. I can not help but wonder how much better the world would be if more people would only follow the golden rule "do onto others as you would have them do onto you". My point is that there are many people in need right now. Not only financial need but emotional need. This is a very hard time of year for many of us, myself encluded.

I really don't want to discuss politics because I have my own views that may not be the most popular. Sense we are going there I will only say a couple of things about that. First of all I resent anyone telling me that I am not moral or a good christian just because I disagree with someones politial policies. I also take offence when anyone suggests that I do not support our soldiers because I don't believe in the war. My son was in the first Gulf War. I didn't approve then any more than I do now. It didn't mean then any more than it does now that I do not support the troops. They are doing what they are told to do. Many believe whole heartidly in what they are doing. I support them 100% but I hate war and killing for any reason. Moral values are great when they are consistant and morality is not mistaken for predudice. Singling out any group of people and treating them like they do not count or that because they are different they don't deserve to be treated like the rest of us is something that I find very immoral. Desiding who is best to run our country based on one issue that is based more on that prejudice that morality is like cutting off your nose to spite your face.

Our country is not perfect. Our elections are not fool proof but it is the best that we have and I sure wouldn't trade it for any other. As for the reason for Christmas I prefer to believe that it is the birthday of Christ, a Christ who died for our sins, not because he thought we should be perfect but because he knew that we would never be perfect.

So once again I say try to do something nice for someone. Make someone feel like they are still an important part of life. Life is too short and too precious to waste always seeking what is wrong with life. Every minute should be spent finding what is right with life and people. I thought that of all people those of us here would know that the best.

Merry Christmas and God bless you both. Lillian

[thoughts and gifts]

Christmas, thoughts and gifts

I have some thoughts about Christmas that I want to share. It seems lately that every time we turn around we hear about another controversary about God's name being somewhere. Now many are even trying to take Christ out of Christmas. If it were not for Christ there would be no Christmas. Most people don't want God or Christ removed from the public but all we do is talk about it or stage some small protest that never really makes a difference. I am telling you that there is a way to make a difference. A way that each and everyone of us can not only bring Christ back into Christmas but God into our everyday lives.

Even the most devout person can find themselves it situations this time of year that tests our patience and quite frankly make us act in a most un Christian way. Maybe it is time we stop and think before we react. Maybe it is time that we remember the reason for Christmas and act accordingly.

When you are in traffic and someone cuts you off instead of getting angry take a minute to speculate about that person instead of jumping to judge him. His or her mind may be with a loved one who is in the hospital and he is trying to get things done as quickly as possible because time is so precious. Not because of more shopping or a party that he may be late for but because he knows that if his loved one even makes it to Christmas it will be the last.

The elderly lady who is in front of you at the store and takes too much time to do what she needs to do and acts like she has all of the time in the world may be trying to feel herself a part of the holidays in the only way she can. She has plenty of time on her hands because she is alone and has no one to share the holidays with. Instead of getting angry wish her a Merry Christmas.

The old man that is at the grocery store in front of you and seems to be lost may be shopping alone for the first time in his life because his wife has died recently and he has never had to do anything alone before. For him the holidays won't bring joy only sadness and remind him that he is alone.

It is so easy to forget why we celebrate Christmas. We can get so caught up in the hustle and bustle of the season that we forget about people. We forget how to care. For most this is a busy and happy time of year but for many it is the most painful time.

Everyone wants to be happy this time of year. We put so much into it that we feel obligated to be happy to make the season pay for the time and money that we have invested. Because of that we tend to ignore or forget some people at a time when they need us most.

My personal experience as well as my work with ill and elderly people have made me very aware of some things. You don't have to understand a person's pain to know that they suffer. You don't have to know the right words to say to give comfort. Sometimes just a hug or a touch on the arm can say what words can't. Looking someone in the eye when you say "Merry Christmas" only takes a second more that it does to mumble the greeting as you rush on your way, yet to someone who is alone or having a hard day it can mean the world.

Sometimes the most important thing you can do for someone is listen. Some things are very painful to live with and having to live with those things without being able to talk about them makes it even harder. Everyone wants to feel of value. We all need someone to care and to show that they care. Being sick or old and frail does not change that. Just remember that there are no guarantees. We are not promised next year or next month or for that matter even tomorrow. In the blink of an eye your world can be snatched away from you and you may be the one in need of someone to care.

The two greatest gifts that we are given and have to give are love and time. I challenge everyone to remember to give freely of those things now while you can. Don't wait for tomorrow because it may never come. It amazes me that a person will work for hours to earn the money to buy a special gift for someone but won't spend a fraction of that time just being with that person. Time is the one gift that we can give that none other can compare to.

Look around you at your family or neighbors or members of your church. Everyone knows someone who is either alone or in some kind of pain be it emotional or physical. Reach out to that person. If you can give them a hug or a pat on the arm. If you can't do that call them and say hello or Merry Christmas or drop them a card saying that you are thinking about them. One minute of time that is all it will take to give the most precious of gifts. You will find when you do that there is a gift for you too. You will once again learn the real reason for Christmas and the the joy of giving from the heart. If we can all do that then there will never be a time that Christ is gone from Christmas or God is gone from our world.

From the bottom of my heart I wish everyone a peaceful and meaningful Christmas. Lillian

[Two Years and It Seems Like Yesterday]

As you know Ann I just went through the same thing less than two weeks ago. As you say it hasn't gotten any easier and it does seem like yesterday. We just have to face the facts. Our lives were changed forever and nothing will ever change that. Now all we can do is try to go on the best that we can. It will never be easy but what choice do we have? Unfurtunately I spent those days alone. I had no one to turn to nor share with. I doubt that it would have really made any differenc. Even in a room full of people I still feel alone. It is just so hard when you have no one to share the simple intimate things, when all you have are memories and those memories are scared by those last days and the and feeling of helplessness.

I want you to know that I will be thinking of you. Like so many here we are sisters in a club that we would trade the last two years not to have to belong to. Bless you my friend and give you the courage to face the coming days.

[Something that arrived in my mailbox........God IS good!]

Thank you so much I have to tell you how much seeing this means to me. You see yesterday and today are the second aniversary of the two worse days of my life. Yesterday for Johnny's last day and today the date of his death. I felt so alone. I heard from no one in my family or his and none of my friends. There was no one to say I know how you are hurting and I'm thinking about you.

I woke this morning wanting to hide from the day. I opened my curtains and instead of the green pines that were there a few months ago all I see is the skeletons of the burned trees and they remind me of the roses. Just a couple of days before Johnny went to the hospital he had bought a dozen red roses. He said that 6 were for him and 6 for me. When I returned to our apartment after his death that morning two years ago the first thing I saw was the roses. They were as black and dead as my life.

I don't need any reminders but this morning they seemed to be every where I looked. Like that day two years ago the pain was so deep that the tears wouldn't come. I was running late this morning dreading going to work. I had only about 5 minutes that I could spare but something made me come to the board. I saw that Elaine had replied to my post of last night. (Thank you Elaine) and I found this.

For the past several months the last thing I do every night is thank God for my family and for Johnny's love and the time we had together. Then I thank Johnny for loving me. When I saw this this morning it was as if Johnny were here telling me that he sees and hears. I didn't feel so alone any more and the knot is my chest gave way and the tears started. I was able to face this day that I have dreaded.

So once again I say thank you from the bottom of my heart. May God bless you and help you to find comfort and peace. Lillian

[Time]

In a half hour it will be exactly two years sense the last words I heard Johnny speak. He was talking to his niece but he was looking right at me and there was a sparkle in his eyes. He said "they are telling me that I am going to die in 7 days and they are full of shi_". I left him then to go outside for a break. When I got back to him he was sleeping. I can still hear him speak those words and see that sparkle in his eyes.

At 4:55 tomorrow morning it will be two years sense he breathed his last breath and my world ended. I am just as raw now as I was then. I just want him to know how much I still love him, how much I need him. He always wanted to know that I needed him too. Does he have any idea how much I still need him?

[It is good to see so many getting signs]

I finally got a chance to read a little here and try to catch up. It is very hard once I get behind and there are so many new people. I want to be supportive but I just don't always have the time to read much less post. Most of the things I have posted recently (about Johnny's last days) were written months ago. Day after tomorrow will be two years sense he died. I am having a very hard time handling these dates and the memories that go with them. Something else is on my mind as well and that is the reason for this post.

I see more and more posts by people talking about signs that their loved one is still with them. It really does my heart good to see that. I think much of the reason for that is that it validates the experiences that I have had. It also gives me hope about what my fate will be someday. I just can't accept that a person can be so vital and alive one minute then ceace to exist.

We hear about miracles all of our lives. We are told about eternal life and profess our belief in those things. Yet when we are given so much evidence that points to those things we try to rationalize them away. I think we are all guilty of that. I know that as much evidence as I have had there are times I still try to find other reasons for the things that have happened.

I posted about my praying hands being lost and the way I found them. I know that could only be a miracle. I think when they were lost a year ago someone maybe God or Johnny or even both knew that there would be a day when I would need a miracle, something that I couldn't explain away, to get me through a hard time. To give me a reason to go on and believe. Finding those praying hands like I did and where I did gave me that.

The truth is there are miracles taking place around us every day. We just have to open our hearts and minds to see them. Our pastor's wife has become a good friend. She is living proof that miracles happen. She had Utiran Cancer that spread throughout her body. All reason would say that she shouldn't be her today but she is and for the third year she has tested cancer free.

Anoter example is the fire that swept through here just 3 months ago. Where I live was completely surrounded by fire. It rose up the mountains at least 800 feet all around us. With all of that only two homes burned here in the park and 26 within the whole area of the fire. Yes we had some brave and determined fire fighters but had that fire swept straight through and not skipped large sections they could never have saved anything. Now I look around and see the new growth as a sign of renewal. Life is once again rising from disaster. Isn't that what eternal life is? I have come to know that eternal life does exist. It is not a fairy tale or something vague that will happen someday. Eternal means on going or everlasting. It doesn't mean stopping then restarting. Life continues only in a different form and eternal life is only a breath away.

Maybe it is because God has been taken from so many things in our world that He is just using another way to make his presence known. Maybe these things have been happening all along but now we are more willing to acknowledge them. Whatever the reason we are being told and shown that life is eternal and our loved ones are always near.

When so many disasters were going on in our country I made the comment that maybe God was trying to tell us something. Maybe He was giving us a not so gentle reminder that He is still in charge. I saw something that supports that idea.

After Ivan swept through the Florida Panhandle a picture was put on the news. There had been two seperate signs that were damaged with half of each being ripped away. One half was imposed on the other so the new message the two halves made was "This is God. We need to talk."

Each and everyone of us here have become personally aquainted with the monster known as lung cancer. Our lives will never be the same. Now we are acknowledging that many of us are getting signs from our departed loved ones. Maybe that is our sign that says "This is God. We need to talk."

God Bless you all. May the signs continue and give us all peace during this difficult time of year. As hard as it is and as many things that try to turn Christmas into something that is all about money we need to always remember what the real reason for Christmas is. Christ gives us the promise of everlasting life. Maybe it is time for us to accept it and testify to what we have seen and what we know.

[33 years married only 51 years old, can't live w/o him]

Joni I do understand how you feel. I know that feeling of wanting to go and be with your loved one. Sometimes still I have that feeling and it will be two years Thursday sense my Johnny died. All I can say is that you get through it. It isn't easy and sometimes you wonder why you bother but there really isn't any choice. Life is not fair but I do believe that dispite our pain there is a reason for our loved ones leaving us behind in this cruel world. Maybe someday when we join them we will understand. The thing is love is a beautiful and precious thing and it never dies. Maybe we have to stay behind so we can project that love for others to see and learn from.

God bless you and help you through the coming weeks. I know only too well how hard the holidays are. Still you have your sons how lucky you are to have them. I will be praying for you and all of us who need to find a way to make our way again. Lillian

[The same chance tomorrow]

I thought this would interest some of you. Isn't it amazing how true it is?

>The Same Chance Tomorrow

>

>These are thoughts I have been having for some time now...and I would like

>to share them with you before life in this world gets too crazy, and

>tomorrow never comes.

>

>

>I have come to realize many things since I connected to the Internet, in

>that we get to meet people we never would have met in any other way.

>

>We get to know these people, not by their looks or by their touch, but by

>their heart and soul. If we had met any of these people on the street, we

>may not have given them a second glance.

>

>Or, maybe we would have looked at them and said: "Hey, look how fat that

>person is," or "Hey look, there's a gay guy" or even "Hey look, there's a

>person of color."

>

>We could have done this and never have known this real person on the

>inside. This is a very sad thing,because I was one of those people.

>A person who would have done exactly that.

>

>But now, I have come to meet many people on the Internet who have

>truly touched my heart in many ways. They have made me a much better

>person.Wouldn't it be something if the whole world could be touched like

>this?

>

>To get to know each other in ways they would never have thought possible? I

>believe if they did, there would be no war, no homeless or hungry people.

>

>This also applies to the people we already know. Don't make assumptions.

>Don't be judgmental. And don't let pride get in the way of love. We should

>stop to think how it would be tomorrow if we lost that person, and we

>didn't

>have the chance to say we were sorry.

>

>So, the next time you pass someone....anyone....think about this. This

>person could be one of your Internet acquaintances ... one of those people

>you would love to meet. One of those people who have a knack

>for making your day, or for bringing some warmth and friendship into your

>life.

>

>One of those who've helped you along the way, and you'd like to repay the

>favor in some small way. Just turn to that person and give them a smile...a

>warm hello.

>

>

>

>And soon this will catch on, and soon we all will be smiling. Because if we

>don't, then the same chance tomorrow may never come.

>

>

>~Author Unknown~

>

>

[I recieved a sign today. A miracle!]

Last night I was remembering the last week of Johnny's life. The aniversary dates are on me and giving me a very hard time. Two years ago yesterday was a Sunday. The Sunday one week before Johnny died. That morning was much like today. Cold, foggy and raining. I had a very hard time that morning and the nurse saw the praying hands on a chain around my neck and sent the chaplin to talk to me. He gave me hope again even tho later everything went wrong.

I have had the praying hands for over twenty years. They have always been special to me. Not long before I moved here from Escondido I lost them one day. I was very upset and had no idea where I could have lost them because I had been in several stores that day. On my way to my car I had asked Johnny to help me find them. When I got to my car I looked down and there they were on the ground. I never wore them again for fear of losing them again. I planned on having them put on a stronger chain.

Before I got the chance to have my praying hands fixed I moved. I remember putting them in my wallet that last day. When I got here they were gone. I searched everywhere for them even going through the tank on my vacuum cleaner to make sure that they hadn't fallen and gotten vacuumed up. I even took my suitcase nearly apart looking for them. I checked every crease in it and in my purse and wallet. Finally I had to give up and admit that they were lost.

I have a job this weekend staying with an older couple while their children go out of town. Sense I had no where to go today and had to look forward to a long and dreary day alone I decided early to take out my suit case and pack for the weekend. It had been stored in the closet inside another suitcase sitting on end. I put it on the bed and when I opened it I saw my praying hands. They were right in the middle of the suitcase laying face up. They weren't in a seam or near a corner. They were not face down. They were in the middle facing me. When I saw them I broke down and started crying. All of the pain this time of year and the lonliness caused me were replaced with a sense of pure joy. I know those praying hands were not in that suitcase before today. I had searched it and I had used it sense then. I know finding them was no accident. Johnny saw my need and once more gave me what I needed to get through one of the worse days of my life. He found a way to let me know that I am never really alone.

I read Katie's story of the cigarette smell and all of the responses. Don't we all know that our loved ones are really just a breath away waiting for us to acknowledge them? This is a hard time of year for all of us even the ones who don't have the aniversary of their loved ones death to deal with. I am sure that is why if we pay attention and maybe even sometimes when we don't they will send us those signs. They will let us know that a body may die but the real person, the spirit never dies. What greater gift could any of us ever hope to recieve?

[I want to appologize]

Now that I have told the whole story of the days leading up to Johnny's death I want to appologize. Not for telling his story but for causing offense to anyones senses or frightening them. That is not my intention. I just want people to be aware.

So many of the things that not only led to Johnny's death but caused us both torment that even my vivid discription can not show completely should never have taken place. Had one person been as insistant as I am to tell his story maybe what heppened to him would have never taken place. Had people been aware would they have dared to do some of the things they did?

I still have many questions about Johnny's diagnosis of lung cancer but that is not what really matters any more. The fact is that he had been diagnosed with it right or wrong. It was that diagnosis that caused the problems. I have learned much in the last two years. Once a person is diagnosed with lung cancer the attitude toward them changes. No matter how well they handle treatment or how well they respond to it they are still seen as a disease, a non person. Things are done to them and things said to them that would never be said to anyone with any other disease. It is that attitude that destroys lives if it takes them or not. Most people shy away from learning about lung cancer because of that attitude. When they are forced to face it because it has hit either themselves or someone they love they have to learn as much as they can as fast as possible. In my case I had no one to learn from. Everthing was trial and error. Mostly error on my part as well as others.

It has become my lifes work to do all I can to change that deadly attitude. If I step on some toes along the way or offend someone senses I am very sorry. That will not stop me. Our story is one that needs to be told. If somehow one person is spared some of the torment that Johnny and I faced I will consider it well worth the effort.

In the recent election we heard so much about morals. I find so much of that hipocritical. When I filed complaints about Johnny's treatment by Jump his behavior was excused because he claimed that treating Johnny when he would not sign a DNR went agains his morals. Still his morals and ethics allowed him to harrase and abuse Johnny's rights. People who cry about how precious life is when talking about abortion turn their back and allow things to happen like they did to Johnny and no one is held accoutable. Where is the morality in that?

So I tell our story every chance that I get. I may drive people away because no one wants to face the reality that I live with. If that is the case so be it. All I can do is plug on and hope that maybe someday just one person will be spared some of the torment that Johnny and I went through. When that day comes something will at last come from his death besides this terrible agony that torments my soul.

[desperation and no way to stop the downward slide]

It was around six in the evening when I left Johnny long enough to get something to eat. He never protested my leaving but I really didn't give him a chance to. I just told him that I was going to eat and would be back in a few minutes. I know I was only gone for a half hour or less. I was so nervous that I couldn't eat much. I knew something was wrong with Johnny's treatment but I didn't know what to do about it. I really thought the other doctor there that night would take over from J. and once the Ativan wore off Johnny would be alright again. I still believed that the fluids or fluid sounds in his lungs were caused by the Morphine.

When I got up to the floor he was on the nurse met me before I went to his room. He asked if I had Johnny's durable power of attorney. I told him no that Johnny had never made that decision and he was perfectly able to make his own decisions. His answer to me was that they didn't think that he was able to make his own decisions. I told him if that was the case Johnny's son lived in Rochester less than ten miles from the hospital and he would be the one to make any decisions. Then he asked who I was. I told him that I was Johnny's legal caregiver. That was when he told me that I could sign a paper to transfer him to Capital Medical center in Olympia. I told him again that I felt that I had no legal right to sign that paper. I suggested that he call Johnny Ray. His reply was that there wasn't time because the ambulance was on the way.

He said that they had to get Johnny to Olympia as soon as possible because his doctor was there and that was the only way he could get treatment for pneumonia. He handed me the paper to sign and I saw no place for me to sign. I handed it back to him. There was a place for a nurse to sign and he crossed out nurse and told me to sign there and write legal caregiver next to my name. I did what he asked. I thought I was doing what had to be done for Johnny to get treatment. I had no idea that I was being lied to or that they didn't need my signature. I was used and I thought made a part of his death. It was only later that I learned that I wasn't needed to sign. They wanted me to sign to back up their lie that Johnny had requested to go to Capital. They must have thought too that because I had signed that paper I would never question them forcing him to go there against his will.

When I got to his room he was more messed up than when I left. He was telling me that they wanted to send him off to Olympia and he wasn't going. He was going home with me and nowhere else. He was really afraid by then and kept trying to get out the door and go home. That's when I learned that they had tried to get him to sign the paper and he wouldn't do it. They wanted to get rid of him but he wouldn't cooperate that is why they said that he was incapable to make his own decisions. They said that because he wouldn't do what they wanted him to do. There was no other reason. They lied to me and used me in a way that would make me feel guilty for months so they could dump him on another hospital because J. thinks he is God and they wanted to cover up their screw up of giving him that damn Ativan.

He continued to beg me to take him home and still kept trying to leave. I kept trying to calm him but he was so upset and so afraid that nothing that I said helped. Then that nurse told me that I had to leave. He said they would never get him in the ambulance with me there. I didn't want to leave him. He needed me and he was so afraid by then. I kept stalling and Johnny kept insisting that I take him home. I knew they were going to send him to Olympia and I had to go with him but they weren't going to let me. I had never been there and didn't know the way and it was so foggy. How could I go to him there. He needed me and I was so afraid for him and he was so afraid. My God what was I going to do?????????

I was so torn. I didn't want to leave him. I knew how afraid he was and he needed me. I didn't want him to go but they kept insisting that the ambulance was on the way and he had to get there quickly so he could be treated for pneumonia. I kept stalling and the nurse kept telling me that I had to leave. Johnny heard and insisted that I was going nowhere without him. He was begging me to just take him home!!! I didn't know what to do. I was so alone that night Johnny was all I had and he needed me and I needed him. I had to protect him but how? What was the right thing to do? I know that I should never have left him alone with them. I had already seen what they had done to him with that Ativan. I knew that he was afraid of them and that they couldn't be trusted. Why did I let them make me leave? Why didn't I get on the phone with Johnny Ray and insist that he get there and help me figure out what to do? He should have been there for me and Johnny. He knew something was wrong by the calls Johnny made to him. Why did he leave me alone there with him so messed up and frightened and them pressuring me to leave? It was so wrong and so unfair to both me and Johnny.

A half hour passed and I was still there. Johnny was still getting out of bed and trying to leave. I kept trying to talk to him and calm him but all he wanted me to do was take him home. He was so strong that I couldn't handle him. He was afraid and still confused about being in a fire house at times then other times he said we couldn't make him go to the other hospital. He was determined that he was not going and that I was going to take him home. The nurse was still pressuring me to leave. Finally I decided to go and get my things ready and find a way to get to Olympia so I could be there with him. I lied to him so he would let me leave. I told him that I was going to the bathroom so he wouldn't fight me about leaving.

When I got to my car I didn't leave. The ramp for the ambulance was right in front of me. I decided to wait so I could see how he was when they left with him. While waiting I called Pam and told her what was happening. That call was placed just a few minutes after seven. At least a half hour to forty five minutes after they told me that the ambulance was on the way. I sat there for another half hour waiting but the ambulance never came. I knew that if I was going to go to Olympia I had to go home and take Misty to Johnny Ray's and find a way to get there. I was afraid to drive it by myself in the dark and the fog but if that is what I had to do I would.

I still have waking nightmares wondering what happened after I left him that night. He must have been so afraid when I didn't come back. He was already frightened and messed up from the Ativan. What did they do to him after I left? That question haunts me every day. I found out later that they gave him Morphine after I left but how? He would never have taken anything they gave him after the Ativan and he would have fought them putting anything in his IV because of it too. They either put it in the nebulizer and pumped it into his lungs again or they held him down and put it in his IV port. What ever they did set him up for the things that would happen at Capital and kill him.

I don't remember driving home. All I remember is that it was so foggy I could hardly see. All I could see was that cold white wall of fog.

I went straight to my phone and called the hospital. I wanted to ask how Johnny had been when they left with him. The nurse told me that he was still there. I started grabbing some of my clothes out of the closet and threw them in a plastic grocery bag. Then I grabbed the charger for my cell phone. Once I had all of my things together I called Valerie to tell her that they were sending Johnny to Olympia and I was going there to be with him as soon as I finished packing. She asked how I was going and I told her that I was going to see if I could get a bus and if not I would drive. I told her that if I had to drive I would call her back and get directions. Then I hung up and called for a bus but the station was closed. I tried another number and got an answering machine with the bus schedule. There were no buses to Olympia that night.

I was in such a state it is just so hard to describe what it was like. The fear and desperation were driving my every move. I had to get to Johnny. He needed me. He would be alright as soon as I got to him. I was there for him. He had told me that I was sent to save him. I had to be with him as long as I was with him he would be alright. I was so frantic and shaking trying to decide what to do. I had no idea where that hospital was. I just knew that they were taking Johnny there and I had to go. I decided I had no choice but to drive myself.

I kept calling the hospital every twenty minutes and each time I did they told me that he hadn't left yet. Then finally around ten a nurse told me that they were just leaving with him and she gave me the phone number for Capital. I waited until ten thirty and called. The nurse told me that he was just getting there and she had no information for me yet. I asked her for directions and she started telling me how to get there. I was trying to get every detail but I know I missed at least half of what she was saying. I had no idea how I would find that place in the fog but I knew that I had no choice but to try. My Johnny was there and he needed me and I needed to be with him.

I called again twenty minutes later and I was told that his oxygen level had dropped dangerously low and they were working on him. The nurse also told me that his doctor Dr.O. had put a DNR on him. I told her no they can't do that. That is not what he wants that's why they sent him there because he wouldn't sign one. She told me that with no one else to make the decision his doctor had made it for him. I was so frantic by then. They were talking about letting him die. My God he could have been dying at that minute and no one was doing anything to save him. I had to do something quickly.

I called Valerie and told her and she said that Johnny Ray was getting ready to call up there and talk to them anyway. He wanted to know how his dad was and exactly what was going on. He talked to me and I told him. I was so afraid. I was crying and begging him to hurry. Then I told him that I was leaving right them but I had to bring Misty to them. He told me not to leave until I talked to him again.

While he was on the phone with the hospital I called Pam again. We stayed on the phone praying the whole time. I was so afraid. "Please God please take care of my Johnny please keep him safe. I'm coming sweetheart. I coming Honey. I'm coming you'll be alright. I'm coming. Please God please!"

It seemed like forever before I could reach Johnny Ray and find out what was going on. I was so desperate and just didn't know how I was going but I knew that there was nothing that was going to keep me from Johnny. While waiting to hear from him I called the hospital and they told me that he had stabilized. That was all they could tell me at that time.

Finally after another twenty minutes or so I called and Johnny Ray's phone rang. Valerie answered and told me to come over there and I could ride with Johnny Ray. He was going to the hospital. I put Misty and my clothes in the car with Johnny's things that were still there from the nursing home. I don't know how I drove that distance that night. The fog was so thick and I was shaking so bad and all the time I was praying and telling Johnny that I was coming to him.

It was one thirty or after by the time we got to the hospital. Johnny Ray knew where to go. They had told him that his dad would be on the second floor instead of the third. He was in a special care unit. When we got there there was one nurse with him. He was sound asleep. I went to him and kissed him and told him that I was there. He barely opened his eyes to acknowledge that he heard me. I knew when I saw him that he had been drugged. He was just the opposite of the way he had been after the Ativan.

I asked the nurse how he was doing and she said "better". I asked how bad the pneumonia was and she replied "we don't think he has pneumonia only bronchitis". Then I asked the same question as always. "Is he moving air all the way down in both lungs?" She said "yes, there are a lot of crackles and wheezes in there but he is moving air all the way down in both lungs".

There was a monitor standing next to his bed but I'm not even sure if it was attached to him. I saw a blood pressure reading and found it was just a little high. I asked the nurse if that was what his blood pressure was and she said no. She told me that was the reading the last time it had been taken. Then she told me that his blood pressure wasn't taken very often because he was not in ICU but a special care unit that was used to stabilize a patient and get them ready for a room. I don't even remember how it came up in the conversation. I only remember her telling us that Johnny had been sent to Capital because our hospital in Centralia did not have an ICU.

One of the easiest lies for me to uncover was the one told to me by that nurse. After Johnny's death one simple phone call told me that there is an ICU at that hospital in Centralia. Why the lie? What did that matter anyway? The same nurse had just told me that he was not in ICU but a special care unit.Why were Johnny and I told they were sending him there because his doctor was there? Why did they tell Johnny Ray that he had been out of control at the hospital in Centralia? I suspect that was in case we questioned why he was in a drugged state when he had been just the opposite before I left him earlier that night. They wanted to make sure that they had an excuse for having drugged him to get him in that ambulance.

We stayed with him about a half hour. I was still very worried about him but not as frantic as I had been. He was doing better and no longer in that messed up condition that he had been earlier. I felt that he was in no immediate danger. When I learned that he would be in the special care unit until at least late morning and that there was no place for me to rest I decided to go home with Johnny Ray and spend the rest of the night there. The next day I would drive my car up there in case I needed it for something or to have when it was time to bring Johnny home with me.

It was after three thirty when we got back to Johnny Ray's house. I was exhausted from all of the day's stress but couldn't settle down. I was still very worried about Johnny and trying to figure out how things had gotten so far out of hand so fast. I knew that Jump and his remarks were partly responsible but I knew too that the Ativan was the thing that had caused the most problems. Why did they give that to him knowing that he had had an adverse reaction to it. The main question is why did they give that to him after he refused it? He had every right to refuse any medication.

I went to the bedroom but couldn't fall asleep. I was tense and anxious for the night to pass so I could go to Johnny. All of the things that had happened in the last twenty four hours kept going through my mind. I was restless and very uneasy about him being at that hospital alone. I vowed that once I got to him again no one would force me to leave him.

I had only been down a few minutes when I heard someone come to the door and talking. I got up to see who it was. Jamie and Emily were there. They hadn't stopped that day on their way back from Oregon because they had left there late. They had just gotten home around midnight when Johnny Ray had called to tell them about Johnny. They had left and stopped at the hospital to see him. He was sleeping when they got there so they didn't stay long and came on to Johnny Ray's to spend what was left of the night. We would all go to the hospital later that morning.

I called the hospital every hour to check on him. I was always told that he was sleeping and doing better. When I wasn't talking to them I was talking to Pam. She stayed up all night so she could keep up on Johnny's condition and be there for me. I don't know how I would have made it through that terrifying night without her.

I was getting anxious for the others to get up and ready to leave. I had to wait for them so I could follow. It was still very foggy and I had been in such a state the night before that there was no way I could remember how we had gotten to that hospital. When I called to check on Johnny around eight that morning the nurse told me that he was doing so well that they were going to transfer him to a room on the third floor. She also told me that he would have someone else in the room with him and there would be a full time sitter there in case either of them needed any thing. She assured me that I had nothing to worry about while waiting to go there.

Not long after I talked to her Valerie's phone rang. She couldn't find the phone so put the speaker on when she answered. It was Johnny and he was looking for me. I talked to him and told him how good it was to hear him awake and sounding so well. He wanted to know why I wasn't with him. After I explained he told me that the only thing he could remember from the time he got to the emergency room in Centralia was Jump harassing him about the DNR and that they had given him that Ativan. He also told me that God had been with him all night. I told him that I knew that because Pam and I had been on the phone most of the night praying.

We talked a little more and then he asked me when I was going to get there. I told him that I was ready but waiting on the others. As soon as they were ready we would leave. I also told him that I was following in my car and there was no way that I would leave him again.

We left for the hospital not long after I talked to him. I felt so much better. He sounded well and alert and there was none of the confusion that there had been after the Ativan. I remembered what the nurse had said the night before about him moving air down in both lungs and she had just told me how well he was doing. I started thinking again about going to Seattle the next week. I knew for sure that God had answered my prayers. He led me to the treatment center and got Johnny though the night. He was doing better and anxious to see me. I had a lot to be thankful for.

The drive to Olympia was not easy for me. I still didn't like to drive on the Interstate too much and it was still very foggy. I'm sure the visibility couldn't have been more than an eighth of a mile. Johnny Ray was flying and I had to keep up with him or get lost. At one time I saw that I was doing eighty and slowed down when I got him in my sight again. I was relived to get to that hospital for more than one reason.

Tom and his family met us at the hospital and we all went up together. I went to Johnny's bed and kissed him. He told me that he had sure missed me and was so glad that I was there. He looked so much better than the night before that I got a catch in my throat. I told him "Oh Sweetheart you have no idea how much I missed you or how worried I was." Relief swept over me in waves. I hadn't slept more than four hours in two nights and had gone through that terrible day but I was finally with Johnny and he was alright. Nothing else mattered.

[Lies and abuse Part 5]

The ringing of my cell phone woke me Friday morning. I was immediately awake and a trace of fear hit me. The only one who would be calling my cell phone that early would be Johnny or the nursing home. I was still very uneasy about that cough the night before. It was Johnny. Later I would see that the exact time of the call was 5:17am.

His first words were "I've already had one cup of coffee and want you here to share another. I've ordered your breakfast so you can eat with me. I'm ready to come home." I explained to him that I had not gone to sleep until very late and would have to take time to make some coffee and walk Misty. He told me to do what I had to do then get myself to him. His last words as always were for me to be careful.

While my coffee was making I got dressed and made the bed. I poured my coffee in my travel cup, took a couple of sips then took Misty out. Once outside I noticed that the fog was thicker than ever and it was very cold.

Once at my car in the parking lot I saw that my windows were covered with ice. I started the car and turned the defroster on. Once the ice had softened a little I used Johnny's handicap license to scrape the ice from my windshield. I knew that the drive to him would be a slow one because of the ice and fog.

I was just pulling into the parking space when my cell phone rang. I knew that it was Johnny and I was already there so I didn't answer it. When I rounded the corner to go to his room I saw him. He was already dressed and sitting in the wheel chair in his door way. I heard him say "it is time to get your buns over here." Then he saw me and told me that he had been calling me because it had taken me so long to get there. He had been worried and eager for me to be with him.

I explained to him about the fog and ice making it hard for me to get there any faster. All he was interested in was that I was finally there and he remarked that he was glad I had taken my time and was safe. I noticed that he wasn't coughing as much as he had the night before but when he did cough it was very productive. His voice had gotten more raspy as well.

I got us another cup of coffee and we talked while waiting for our breakfast. He had chosen again to have breakfast in his room. He was in a hurry to get it over with and leave. He told me again that he felt better and stronger than he had in weeks and that my concern about his cough was not necessary.

The night nurse was still on duty and when he came to make his last rounds I asked him to listen to Johnny's chest. He listened and told me that he didn't sound any different than he aways had. I also asked him my standard question. "Is he moving air all the way down in both lungs?" He answered "yes".

After he left the room we speculated on whether the Morphine had caused him to start coughing. He told me again how it had affected him and that he would not take it again. He also told me that the night nurse had told him not to take it. I've wondered many times if that nurse told him that because Johnny said it bothered him and he just told him that he didn't have to take it if he didn't want to. Then again did he just tell Johnny "don't take it" and if so why?

When the shifts changed at 8 o'clock the nurse came to his room on her rounds. It was time to take his vital signs and record them. His heart rate and temperature were both normal. His oxygen saturation reading was in the low 90s and his blood pressure was a little higher than normal. When she was finished with his vital signs I asked her to listen to his chest because he was still coughing. She listened then said "oh yes there are fluid sounds in your lungs. I have to call your doctor." Johnny was still insisting that he felt better than he had in weeks.

I've wondered a thousand times what would have happened had I listened to Johnny and not insisted that the nurse listen to his lungs. If I had taken him home like he wanted would the problem have cleared on it's own? No matter how many things it could have been that caused that cough I will always believe that the Morphine was the primary cause. Once it had worn out of his system maybe he would have gotten over it on his own. I'm certain that the upset of that morning is what made his condition worse. The delay in going home caused him to be very upset. I also remember that the day before that cough started all of his blood work and vital signs had been good. If an infection had been brewing surely at least one of those things would have indicated it.

Breakfast came and he ate it all. As soon as he was finished he told me to start getting his things together because it was time to go home. I was concerned because we still had heard nothing more from his nurse. I told him that I would start but first I wanted to know what the doctor had told his nurse. I went in search of her and found her on her rounds giving out the morning medication. When I asked her what the doctor had said she answered "I haven't had time to call him yet". I went back to his room and told him that the nurse hadn't talked to his doctor yet and I felt that we should wait to leave until she did. He wasn't very pleased but agreed to wait.

By nine we still hadn't heard anything from his nurse so I found her and asked the same question again. I got the same answer. She hadn't had time to call yet. When I told Johnny he was very annoyed. He was ready to go home and no one was making it happen. As time passed and still no word from her he started getting very agitated and restless. Again I found her and got the same answer. His doctor had still not been notified about the fluid sounds in his lungs.

The more time passed the more agitated he became. I had seen him display a lot of different emotions but what I saw that morning was different than anything I had seen before. The physical therapist came to work with him a little past ten o'clock but he wouldn't co operate. She pushed him out into the hall and I followed. She managed to convince him to do a few leg and foot exercises but his mind was not on what he was doing. Several times he looked at me and told me " it is time for you to take me home".

The therapist worked with him for a few minutes but when it was obvious that she was getting nowhere with him she gave up. He was still sitting in his wheel chair in the hall and the nurse was nowhere to be seen. He asked me to push him for a while in the wheel chair. When we got to the nurses station she was not there so we passed it up and went to the end of the hall. There was a door there that went out to a patio so we stayed there for a couple of minutes looking outside. As we turned to go back toward his room he spotted one of the aides. She had the parrot on her shoulder that often rode there. Johnny asked her if she knew where the nurse was and she said "no". The parrot said "I'll drive" and once again Johnny made the remark that he should be taught to say "You're drunk. I'll drive".

Once back at the nurses station we saw that there was no one there. He wanted to wait for the nurse so we stayed. We had only been there for a few minutes when someone in the room next to the nurses station started moaning very loudly and making strange noises. That upset Johnny and he told me to get him away from there. We started back toward his room looking for the nurse as we went. We never found her.

I started to stop at his room but he insisted that he wanted to go some more. Just two doors down from his room were the set of double doors with the keypad. The same doors that we had gone through to get to the dinning room and to get his hair cut. He wanted to go through those doors. I tried to talk him out of it. I told him that we should stay close to his room so we could be found if the nurse or his doctor came looking for him. He answered "if they want me they'll find us". I still tried to argue with him but he was insistent. Someone put the code in and the doors opened. He started pushing himself through so I pushed him.

For some reason they had the very worst of the Alzheimer's patients in that room that morning. We had not gone more than a few feet when Johnny started screaming "My God My God look at that. I'm getting sick. Take me out of here and get me home. I want to go home right now. I came here of my own free will and no one can keep me prisoner here." I rushed back to his room with him but he wouldn't stop screaming that he wanted to go home and we were keeping him prisoner. By the time we got to his room he had made so much noise that the nurse was there. She tried to talk to him but he wouldn't listen. He was very agitated and just wouldn't be calmed. She left and I'm sure that if she called his doctor at all it was when she left us there with him screaming about being held prisoner.

I had never seen anyone react the way he did that morning. His behavior was totally irrational. At the time I was very frightened. I was much more worried about his behavior that his illness. Sense then I have learned about both the withdrawal symptoms of the Paxil that had been stopped less than a week before and that agitation and fear are two of the side effects of Remeron. I strongly suspect that it was one or both of those things responsible for his behavior that morning.

His reaction to the Alzheimer's patients is something else I speculate about. Why did that have such a profound effect on him? I know that he remembered his dad's mental problems and the brain damage that his brother had suffered from a heart attack. Could it have been those things that caused his reaction?

After the nurse left I sat on his bed with him. He continued to demand that I take him home always saying that we couldn't hold him prisoner there. The phone that was usually at the nurses station was on his tray table. He picked up the phone and called Valerie. He was telling her over and over that he wanted her to come and get him because they were holding him prisoner and I was helping them and wouldn't take him home. After he finished talking to her he tried to dial another number but by then his hands were shaking so much he couldn't dial the phone. When I asked who he was calling he said he wanted to call his doctor. To buy time I dialed the number for him.

Once on the phone with the receptionist he told her the same thing he had told Valerie. By then he was shaking almost uncontrollably and it was obvious that he was very frightened as well as agitated. I took the phone from him and talked to the receptionist. I told her that he had a serious problem and was very upset and needed to see his doctor right away. She told me that she thought his doctor was on the way there but said she may be wrong. She had just heard him say that he was on his way to the hospital. Johnny was not in the nursing home at the hospital. I told her to not mind because I was taking him out of there right then and bringing him to the doctor.

The minute that Johnny heard me say that I was checking him out of there he calmed down. His agitation had started to build nearly three hours earlier yet when he heard those words he calmed down instantly. All traces of the agitation and fear were gone. The only sign that he had any problem was the shaking of his hands.

I found his nurse and told her that we were leaving. By then the head nurse was there and while I gathered Johnny's things she brought a paper for him to sign. The paper stated that he was leaving against their advice even tho his doctor had said that he could leave whenever he wanted to. It stated that there was obviously something wrong with him. He signed the paper. All he wanted was to get away from there as fast as he could.

Then she handed me a paper and a plastic bag. When I asked what was in the bag she told me it was his medication. The paper stated the medications that he was taking at that time. It was Predizone, Remeron, Marinol, Vicodin 2 every three hours and Tylenol 2 every four hours as needed. It also stated that he was to receive the nebulizer treatments every four hours while awake and at night when needed. The Morphine was listed as given every four hours for shortness of breath. Nothing was said about anxiety.

That paper listed every medication that he was taking and the times they were to be given. The plastic bag only contained two medications. There were over thirty tablets of Hydrocodone 5/500(Vicodin). I had been right about the amount of acetaminophen that he was being given. At two tablets every three hours he was getting 7 grams. Nearly double the four that is the maximum amount considered safe. The bag also contained 9 vials of injectionable Morphine. She just handed that bag over to me no questions asked.

Morphine is a controlled substance and there are very strict federal rules regarding how it is dispensed. The prescription has to be hand written in triplicate. It can not simply be ordered by a phone call. The bag those vials were in showed the the prescription was written on Wednesday November 27th. The same day as Johnny's last chemo treatment. The day that Dr. O. was there not G. yet it was G. who had written the prescription. How when he was at one of the other clinics that day? I suspect that he had already written that prescription and when the chemo nurse called him about our conversation he was told to put the date on it and turn it into the pharmacy to be filled.

I only learned that it was injectionable Morphine when I called the medical board to find out how I could get rid of it before I moved. I knew that it was a controlled substance and didn't want to transport it across the state line. When told to dump it in the toilet I tried. I could not remove the cap. That is when I saw the rubber insert and knew that it was injectionable. I took it out side and wrapped it in paper to break the vials with a hammer. Two different people at the medical board heard my story about that morphine that day and not one of them questioned the fact that it was given to me so easily. I also know that the day Johnny dumped the second treatment in the trash was also something that should have been recorded. It is stated that all waste should be recorded and two people should sign as witness. They didn't even see him dump it because no one stayed in his room.

I took his things to the car and brought the car to the door while an aide helped him to the door. He was wrapped in the same blanket that he had spilled coffee on that Monday morning. That along with the coffee stained sheets were still on his bed that Friday morning. Not once during the week had his bed been made other than the several times a day that I straightened it.

We were not out of the drive way before he started complaining of having trouble breathing. I asked if he wanted to go to the hospital or to his doctor. He said he wanted to go to the doctor's office. I turned into the street but he was still complaining of being short of breath so I went to the emergency room parking lot and stopped the car. Once again I asked if he wanted me to take him to his doctor or the emergency room. He said the emergency room. Even while complaining of being very short of breath he never showed any sign of the anxiety nor the agitation from earlier that morning.

I drove to the door of the emergency room then went inside for help. Someone came with a wheel chair and took him inside. I assured him that I would be with him as soon as I parked the car. When I got inside I gave the information needed then went to him.

By the time I got to him he already had a port in his hand. It was not hooked to an IV. He was also very nervous and very frightened. A breathing treatment was in progress and a student was standing by observing. When he saw me he told the nurse that I was the one to get the information she needed from. They needed a list of his medications. I handed her the list I had gotten from the nursing home and she copied from that. When finished she asked Johnny about his allergies. He told her Penicillin, Codeine and Ativan. She wrote them on an orange wrist band and attached it above the IV port.

Once the breathing treatment was finished they started running tests. They took a urine sample and a blood test. They also had him spit in a cup so they could test the mucus. A chest ex ray was taken as well. After I was with him for a while he started to calm down. I found out that his fear came from learning that his oxygen reading was a little below 90. He was convinced that anything below 90 was life threatening. That idea came from the night that he had gone by ambulance to the hospital in July. Because his oxygen had been at 86 that night he thought if it was below 90 it was dangerous. I had learned differently.

I think back now to that day and it seems that every word said to him and every thing done to him from the minute that nurse heard the fluid sounds in his lungs seemed designed to cause him harm. I know that is a terrible accusation but the things said and done from that minute until the minute that he died are just not normal things done or said in a hospital. As I continue our story you will understand what I mean.

He was resting and nearly calm when the nurse came to take his vital signs again. I knew that if the oxygen reading was below 90 that his fear would once again trigger an anxiety attack. To try to head that off I asked the nurse a question and told her his fear about that reading. I told Johnny that I had heard of people who's reading was in the 60s and they were alright. The nurse stated that she had seen people with theirs in the 40s. Johnny asked how they were and she answered "I don't know they weren't breathing". That was not what I had in mind when I asked for her help and it was certainly the last thing that Johnny needed to hear.

The nurses remark had upset Johnny and by the time she checked his heart it was starting to race. His oxygen was at 88 and when he saw it an anxiety attack started at once. She started to take the monitor off of him but I stopped her. I told her to leave the oxometer on his finger. I told him to watch the monitor and listen to me. I started talking to him like I had done at home. By reminding him that he was in control and to do his pursed lip breathing I got him to start to calm down. When he turned to look at me I stopped him and told him to not look at me but watch the monitor and do as I said. I coached him in the pursed lip breathing and breathed with him encouraging him to breathe and to slow down his breaths. As he did as I said he saw on the monitor that his oxygen level rose. In less than two minutes we had the attack under control and he was breathing normally with his oxygen once more in the 90s.

We waited and still there was no word on what they thought his problem was. One time he used the urinal and got upset. They had removed his shirt and put a gown on him but he still had his pants on underneath the gown. While trying to hold the gown out of the way and hold the urinal he spilled it on his pants and the floor. He was very upset because of that and embarrassed because someone would have to clean it. I told him to not worry about it that it was their job. Seeing what that did to him bothered me. It kept running through my mind that he had suffered so much already why did he have to lose his dignity too.

We had been there for quite a while and I had not left him for a minute. I knew that Jamie was supposed to be stopping to see him and would find us gone. I needed to let someone know where we were and what was happening. Johnny had had another breathing treatment and was breathing better. He was also calm and resting. I told him that I needed to go outside and call Johnny Ray so they would know where we were and could tell Jamie if he called looking for us. He agreed so I left him to go outside and make the calls.

I have no idea what time it was when I went to make those calls. I don't recall looking at my watch and it had started to rain lightly so there is no way to judge by the light. I could probably find out by checking my old cell phone bill but I can't right now. Even something as simple as that is still very painful for me and I try to avoid it. I only know that day seemed to move in slow motion and at the same time it seems to have flown by. I made my call and went back inside to Johnny.

When I got to him he had something to tell me. What he told me still puzzles me till this day. That is one of the many questions that seeing his medical records would have answered. It is only one of the questions that will torment me for the rest of my life. He said "I saw my ex ray. He told me that everything black is good and everything white is bad. I didn't see any white on it at all." At the time I thought that maybe he was just seeing what he wanted to see. Sense his death and the things that happened causing it I wonder just how right he was about what he saw. He was awake and not anxious nor had he taken any medication other than the breathing treatments. There was no reason for him to see or miss anything on that ex ray. Did he see exactly what he said that he did?

While waiting the Chaplin from the rehab unit passed by and saw us there. He stopped for a minute and talked to Johnny. Before leaving he said a prayer for us. When he left Johnny thanked him for stopping and for his prayer. By that time we had been there for several hours and still had no answers. We had no idea what to expect. Johnny was still in the hospital gown and his jeans and shoes.

During the afternoon his vital signs had been taken several times. Each time he was nervous and if the reading showed 90 or below he would start to have another anxiety attack. When that happened I reminded him that he had seen how it could be controlled if he calmed down. That reminder was all that he needed and again he would watch as the reading climbed into the 90s. The nurse saw as well as he did.

I'm not exactly sure of the time that the nurse came to see him again. I'm pretty sure it was around four o'clock but I'm not certain. When I asked if they knew what the problem was she told me that all of the tests were inconclusive but they had decided to put him in a room and treat him for pneumonia. She also had a medicine vial and told us that she had something to give him to calm him down. We had been there for nearly 5 hours by then and during that time he had been nervous and frightened but nothing had been given to him to calm him. Why when he was finally calm and relaxed did they decide to give him something for anxiety? When I asked what she was going to give him she answered "Ativan".

When we heard Ativan we both told her that he couldn't take it because he had had a reaction to it. We also pointed out that it was listed on his wrist band with his allergies. She questioned him about the reaction and when he told her he had had hallucinations she told him that hallucinations are not an allergy. He then told her "I don't care what they are I will not take that shi_ again". She left the room with the vial in her hand.

A few minutes later she came back to his room and told us that a bed was ready for him upstairs and someone was coming to take him up. She also had a vial of medicine in her hand and started putting it in his IV. When I asked what it was she said "Ativan". It was too late to stop her. It was already in his veins. While she was putting the Ativan in his IV port someone closed all of the doors and the speakers announced that there was a fire drill. We were told that as soon as the drill was over Johnny would be taken to his room.

The fire drill lasted five minutes or less. By the time it was over Johnny was already saying things that didn't make sense. I knew it was the Ativan and remembered the night he had taken the extra one and the problems that had caused. I knew that we had a very long night ahead of us. I just had no idea how long.

When we got to the second floor they put us in a room across from the nurses station. There was little more than room for the bed and a chair. I have no doubt that it is the smallest room in the hospital. By then everyone who had come in contact with him knew of his claustrophobia and the anxiety. I know that I may seem paranoid when I wonder if putting him in that room was not by design. After the other things that I saw done to him that weekend I would believe anything possible. My other question is could his fear of being put in a small room and left alone have been a premonition of what would happen to him in that small room that night?

It was apparent from the minute we got there that the room made him uncomfortable. It was also obvious that the Ativan was in full force by then. He looked around the room then at me and asked in a voice full of fear "where are we? What kind of fire house is this?" I tried to tell him that he was in a hospital room but he wouldn't hear it. He kept insisting that we were in a fire house and I tell him where it was. That went on continuously for an hour or more. One time he grabbed at my jacket and when I asked what he wanted he told me to give him a cigarette. I reminded him that he had not smoked in months and smoking with the oxygen would blow us all up. He said "then let's go outside and you can smoke and I can see where this fire house is."

There was a male nurse on duty and I asked him how long we could expect him to be like that before the Ativan wore off. He told me at least eight hours. Over and over again he would ask me where he was and what kind of fire house we were in. Then he started asking me to take him home. He was almost begging me to take him home or show him where the fire house was that we were in. He would stand up and try to leave the room. He was very wobbly and disoriented but still very strong. I would stand in front of him but he was just too strong for me to handle. I had to call the nurse again and again to help me get him back into bed.

Then one time he asked me to get in bed with him and snuggle. I told him that I couldn't because they wouldn't like it and would make me leave but he insisted and I still wouldn't do it. I don't know why I was so worried about what they would say. I should have lain with him and snuggled him maybe it would have calmed him for a while. Maybe he would have settled down and not have been so afraid. I could have held him again or he could have held me. I'll never understand why I didn't just do as he asked.

He called Johnny Ray three times and told him that he was being held prisoner in a fire house. He begged him to come and take him home. He kept saying those things that just didn't make any sense and it was getting worse by the minute and harder for me to handle him. I was not only very tired but very afraid for him.

When the nurse would take his vital signs his oxygen would be below 90 and he would again get upset. That added to what he was already going through made his fear even worse. I talked to him again and showed him that he could raise it but it was getting harder because he wouldn't set still long enough and he was still insisting on going home or outside to see what kind of fire house he was in. Still with all of that going on and after we had been told that he would be treated for pneumonia nothing was attached to the IV port in his arm. It had only been used the one time to give him the Ativan. He was also still in his pants and had his shoes on. The only medication he got while I was there were the nebulizer treatments that he received. He was never given a meal either.

It was about six o'clock when the doctor on duty that night came to his room. The minute I saw him I knew that it meant more trouble. It was J. the one who had harassed him in July because he wouldn't sign a DNR. He came to Johnny's room that night with one intention and that was not to check him. The first thing he said was "I see that you didn't fill out the advanced directive or the DNR." Johnny told him "no I didn't. I came to the hospital to live not to die. I want everything done to save me."

That was not the answer that J. wanted. He kept on at Johnny to sign a DNR. Still Johnny refused. That is when that so called doctor went into a tirade. He was almost shouting as he used the same speech that I had heard in July word for word. At the end he would add one more line. He said " I find it hard when someone has lung cancer to jump on their chest, break two or three ribs just to bring them back and put them on a respirator when they are going to die of cancer anyway. I find that inhumane and I won't do it. If you don't sign that paper I won't treat you."

For two hours Johnny had been battling the effects of that Ativan but when he heard those words he looked J. right in the face and in the calmest of voices said "I don't want you to treat me. You are not my doctor. Dr.O.is". I then told him that he had his answer and asked if there were another doctor in the hospital that night. I was told yes and then he left.

Johnny was upset by his words but determined that he would not change his mind and believed that because Dr.O. had agreed to be his doctor that he would not have to see any other again. Still when J. left he started again asking me then almost begging me to take him home. I was tired and scared and saw a long night ahead of us. It was getting harder and harder for me to control him. He was just so strong that when he got out of bed and tried to leave that I was unable to hold him back without assistance. I needed time to calm myself and something to eat. Neither of us had eaten sense breakfast that morning. I assumed that they would bring a tray for Johnny so I decided that I would leave him for a while and go get me something to eat. I needed time to think and get my nerves calm and food to nourish me for what I knew would still be a very long night.

When I left the room I saw J. at the desk. He was signing something. I thought he was giving information for the other doctor that was there. I had no idea that he was signing the paper that would send Johnny to his death.

[Thanksgiving, a bitter sweet memory Part 4]

I woke early Thanksgiving day. I wanted to get to Johnny as early as possible to spend most of the day with him. Before I left home I had something else I wanted to do. I had my coffee and checked my email and just relaxed for a few minutes. I wanted to call my children but I knew because of the time change they would already be gone to their uncle's house for Thanksgiving dinner. I would call them later I had to do what I planned and leave for the nursing home. I gave Misty her bath. It was time for her to visit Johnny.

By the time Misty had both her morning walk and her bath it was after eight. We got to the nursing home around eight thirty and he was waiting. I'm not sure who he was happier to see me or Misty. He loved his little dog so much. For eight years she had been his companion and many days the only company that he had. He called her his "little camping buddy".

He had already had breakfast by the time we got there but was ready for more coffee. I got us each another cup of coffee and we just talked for a while. We talked about going to CTCA in Seattle the next week and we talked about him going home the next day. Again he told me that he felt better and stronger than he had in months. He looked so good that morning. He was happy and calm with no sign of the anxiety that had plagued him for the past two months. I wasn't even worried about the Vicodin that morning. I new that when we got to the new treatment center that they would work on both the anxiety and the dependence on the Vicodin. He looked and sounded so well that I was determined to enjoy our day together and forget his illness for a while.

It was a little after nine when the nurse came to his room with something new. She told me that they were going to try him on a new nebulizer treatment to help the anxiety. When I asked what it was she told me it was Morphine. She took the cup for the nebulizer out of the drawer by his bed. He would put it there because it was still attached to the machine and he didn't want it to fall in the floor. Usually it still had a little of the last duo neb treatment still in the cup. I don't remember if she had to pour some out or not. At the time it just didn't seem important. She put the morphine solution in the cup and handed it to Johnny then she left the room.

He did that the same as he did all of the nebulizer treatments. He turned the machine on and took a few breaths for about two or three minutes then turned it off. It took him nearly a half hour to finish the treatment and still there was a small amount left in the cup. When he put it back in the drawer he told me that he was not going to take it again. He said "It makes me feel strange and gives me a headache". Later she came with his regular nebulizer treatment of duo neb( a combination of Albuteral and Atrovent).

I called my children from his room. There were no rules there against the cell phone being used. We had the tape of guitar music playing low in the back ground. The first time that he had heard it he loved it and we played it several times a day. I took Misty out for a walk and when I got back he asked if we could go for a ride later that afternoon. He wanted to see his grandchildren and tell them Happy Thanksgiving. I agreed to take him if it was approved by his nurse. When he asked her she said "yes" as long as we were back in time for his evening medications.

About eleven o'clock he told me that he had to use the bathroom. He had not had another bowel movement after the one Sunday morning at the hospital. He had been eating much more and taking a laxative. It was starting to work. The bathroom was only about four feet from his bed but he didn't want to go in there. There was a porta potty there and he asked me to bring it out by his bed and close the curtains. I did as he asked and took Misty with me to stand outside the door in the hall.

It was not long before he told me that he was in trouble. He had to go but couldn't. He stayed for a while and still had no luck. About that time the nurse came to his room. When she learned the problem she put on a pair of gloves and helped him. She placed the porta potty back in the bathroom. He was very relieved and told me that he would not refuse the stool softeners again. He also said that he was ready for his Thanksgiving dinner because he was very hungry.

Not long after he used the potty I started to notice that he was coughing. It bothered me because he had really not coughed much in months. The cough also sounded very loose. Soon he was spitting up mucus. Something else he had not done in months. I found the nurse and told her that I was concerned because all of a sudden he was coughing and his voice was starting to get raspy. I asked if it could be from the Morphine and she said it could be. She suggested that the Morphine could have relaxed both the lungs and the air ways and that was why he was coughing. It never occurred to me to ask if that could start to produce mucus again.

Johnny decided that he wanted us to have our dinner in his room. If we went to the dinning room I would have had to put Misty in the car and he wanted her to stay with us. He also said that he wanted us to have our first Thanksgiving dinner together alone. I was willing to do anything that he wanted. I had offered to help in the dinning room if they needed someone but no one had ever asked me. I was glad that they hadn't because we could take our time and plan for his homecoming the next day. We had a pleasant meal and he ate everything including my sweet potatoes. That is he ate everything except the bites he kept sneaking to Misty when he thought I wasn't looking. When I caught him he just laughed and said "She needs her Thanksgiving dinner too."

Later one of the aides brought a plate for Misty. She had bread and sweet potatoes. What she didn't know was that Misty is very particular. If it is not meat or cookies she doesn't eat it. When she saw the dish she ran to it took one sniff then jumped back upon the bed with Johnny.

We had our coffee after dinner and desert and just relaxed for a while. Once more Johnny told me how much better he was feeling. He looked it too but that cough was getting worse and it worried me. When I mentioned it to him he told me that he didn't know why I was so worried. He said that it didn't bother him at all. He still felt great.

After one the nurse came with another dose of Morphine for the nebulizer. Again we were told it was for the anxiety. Johnny told her that he didn't feel anxious at all and he would not take the Morphine. He also told her the same thing he had told me earlier. That it made him feel strange and gave him a headache.She took the cup out of the drawer and put the Morphine in the cup. She handed it to him and told him that he should at least try it then turned on the machine and left the room. After she left Johnny turned the nebulizer off and dumped the Morphine in the trash basket.

It must have been around two thirty when we left for our drive. I brought the car to the back door and one of the aides helped him into the car. He only needed help with the oxygen bottle. It was a small portable one but a little bigger than the one we had at home. It was also shaped different and Johnny found it awkward to handle.

Our first stop was our apartment. I wanted to drop Misty at home and Johnny wanted some things from our apartment. He wanted his own oxygen because it was easier to handle and also because it had the metered flow that only gave out the oxygen when he took a breath. He set that one at two liters. The one from the nursing home was set at three liters like the concentrator was. He also wanted his combivent inhaler in case he would have an attack and his urinal. Those things were just insurance and he told me that he doubted that he would need them but wanted them with him just in case.

We were only about a mile from our house when he started coughing. Again he was spitting up mucus. He used the last tissue we had in the car and told me that we would need to stop and get some more. A little ways further he had another coughing fit and I pulled over to the side of the road. Sense he had no tissues he rolled the window down to spit out. He didn't spit far enough and some went on the side of the car. It upset him and he said that he was sorry and it was "so disgusting". I told him not to worry about it that I would clean it later.

There was a small grocery store about half way to his son's house. I stopped there and he gave me money to buy his lotto tickets, candy bars for the children and a box of tissue. When I got to the car I took one of the tissues to clean the side of the car. He was bothered because I had to clean it and again said it was disgusting. I was bothered because I saw that the mucus was a very pale green.

When we got to his son's they all came out to the car. I got out but Johnny sat in the car. He was in the greatest mood laughing and teasing. He was telling them about me finding the new treatment center and that he would be going there the following week. Earlier in the day his son Tom had called from his in-laws to check on Johnny and wish us a happy Thanksgiving. Johnny had asked him about the location of the treatment center. When he learned that it was in one of the better parts of Seattle his hope that he had been holding in check spilled out. He was so excited about going there and was telling his son that he felt like once there he would start to get well again.

All of the thoughts from the day before that had caused me to talk him into staying in the nursing home until Friday were gone. He was so happy and seeing him so happy and so sure and optimistic again made me happy. That's all I had ever really wanted was for him to be happy. That is why I had gotten so upset with his kids for not paying more attention to him. It hurt him and he needed them to be happy. Seeing him that day so full of life and so full of hope again is such a bitter sweet memory.

Thanksgiving day had started out very foggy and the fog had not lifted until well past noon. While we were talking with his son and daughter-in-law I noticed that the fog was starting to settle in again. I told Johnny that it was time to go and he agreed. Valerie fixed me a plate from her dinner to take with us. Johnny told her that he would just eat something light when we got back to the nursing home. He said that he had such a big dinner that he was still full. Once I had my plate we left. I didn't like driving in the fog any more than I had to but mostly I didn't want to have Johnny out too long in the damp air. I was getting very worried about his cough.

On the way back we were talking about our visit and going home the next day when Johnny started coughing again. I said " I sure don't like that cough. It is starting to worry me." His reply was "you worry too much. I feel great it doesn't bother me at all. Don't talk about it any more you talk too much. I sure hope your talking doesn't break us up." I don't even remember how I answered him.

I had mixed feelings about what he said. I knew that he was just trying to get me to stop mentioning the cough. Whenever I talked about anything that he didn't want to think about he would tell me that I talked too much. I also knew how much he loved me and that he needed me. He said that about my talking breaking us up because he wanted my mind on something else. As he had said that Wednesday morning at home. "We are just too much alike. Sometimes words are better left unsaid." I believe too that words are sometimes just not needed because we both knew what the other was thinking and how we would react.

It was nearly dark by the time we got back to the nursing home but Johnny was still going strong. He was just so wound up that he could hardly keep still. He asked for my cell phone and started making phone calls. We called his sister Irene in California and then my niece Jacci. We both talked to Jacci and her mom. He was telling everyone how much better he felt and that he was going home the next day then to Seattle the following week. He made sure they all knew that he expected to be cured.

Between phone calls he asked me to go find the nurse and ask her if they could get me something to sleep on. He said "it has been such a great day that I don't want it to end. I want you to spend the night with me. I want you here with me." I have to admit that I was really not thrilled with the idea of spending the night there. I hadn't been sleeping that well with him gone and knew that I would not sleep well if I stayed there. I was worried about that cough and would be jumping up at every sound he made. I knew also that the next day would be tiring. Checking him out and getting him and all of his things home would take both time and energy. The following week would be filled with preparation for going to Seattle. I was already tired but because it seemed so important to him I agreed to stay if they had something for me to sleep on.

I looked for the nurse but she was not at the nurses station. I went back to his room and told him that I would ask when she came around later. It had been nearly a half hour and still I hadn't seen her when we called his niece Pam. He talked to her for a while then gave the phone to me. I was talking to her when he got off the bed and headed for the door. Just as I jumped to go to him he swayed a little and I called out to him. He straightened himself and told me not to worry that he was very strong and he was going to find the nurse himself. He said he wanted me to stay with him and he was tired of waiting to ask. He went out into the hall but didn't see her. He came back disappointed but very proud of himself.

It had been over a month sense he had walked further than from our bedroom to his chair in the living room. A distance of a little over ten feet. On those occasions he had always had to have the oxygen turned up and the nebulizer ready. He required neither of those things that night. It had also been over a week sense he had walked at all. The furthest he had gone was from his bed to the chair on the side of the bed or the wheel chair if he wanted to go somewhere else. He walked further that night than he had in weeks and had no attack at all. Other than that one small sway he walked as strong and fast as he always had. He was so proud to show me that he could do that and again reminded me that he felt stronger than he had in weeks. Still he had that cough.

I went into the bathroom several times that day. Each time I smelled the porta potty. When we got back from his son's house it was still in the bathroom not emptied. When a new aide came to his room after the shifts changed at eight o'clock I told him about it and he emptied it. He was very angry about having it left for him. I'm not sure if it had to be measured or not but he did take it away in a plastic bag.

The cough continued all evening and the raspy voice got worse. Every time I voiced my concern to Johnny he brushed it off. He kept insisting that he felt better than he had in months and that the cough was just an annoyance and didn't really bother him.

I had one of the aides warm the dinner I had gotten from Valerie in the microwave. By the time his supper got to him Johnny was hungry again and ate it all with a banana afterward for dessert. He had gone all that day without one anxiety attack. He had walked for the first time in over a week. We had gone out in the car and he had put up with that cough. Not once did he complain of being short of breath nor did he act anxious or complain of any pain. He not only said that he felt better than he had in months he looked better and his actions said that he was better.

When his nurse came at eight o'clock to give him his evening medication he finally got to ask her about a place for me to sleep. She told him that there was no place and if I stayed I would have to sleep in the chair that I was sitting in. That chair had a straight back and no leg rest. Johnny told me that he knew that I couldn't stay and sleep in that chair because it would be too hard on me. He told me that I could just stay as late as possible then go home and get a good night's rest so I could be there early the next day to take him home. He said then we could be together again and snuggle.

Not long after he took his medication he started getting sleepy. Before he fell asleep he called me to his side and told me that he would be going to sleep and I was tired. He said there was no reason for me to stay once he fell asleep so I should go home and get a good night's sleep and be back early the next morning to take him home. He kissed me good night and I left for home.

I drove home in the fog taking the long way through town. When I got home I took Misty out for her walk then got on the computer. There was no one to talk to. Everyone was either still enjoying their holiday or home recuperating from it. I played solitaire for a while hoping to get sleepy. I was just too keyed up to relax. I had so many things on my mind. I sat up and played that game until near midnight. The last thing I did before going to bed was call and check on Johnny. The night nurse assured me that he was fine. He had been awake for a while and they had been talking but Johnny was sleeping again. I mentioned the cough and as always reminded him that if Johnny needed me for any reason to be sure and call me.

Once in bed I still couldn't sleep. I was thinking about getting his medical records and the drive to Seattle that I was dreading. I was still worried about his cough too. It had been the best day that we had shared in weeks. I knew that the reason that he was looking and feeling so much better was because he had found hope again. I had seen what had started the anxiety and how quickly things had gotten out of hand. Now just as quickly they had reversed and I knew the reason for that as well. Even worried about that cough I was sure that God had answered my prayer and soon Johnny would start a new treatment and counseling and be doing as well as he had before that nurse had made that damaging remark. I thought about the Morphine and wondered again if it was responsible for the cough. Johnny had been fine before that first treatment with it and the cough had started less than two hours later. I was also wondering why they had started it that day. The first day in two months that he had not had a problem with anxiety.

It must have been around one in the morning or after by the time I finally fell asleep. The last thing I remember thinking was that the next night Johnny would be home with me and we would again sleep snuggled in each other's arms.

I've never found out for sure what caused that cough and the fluid sounds in his lungs. There never was a definite diagnoses either. I believed right from the start that the Morphine was responsible. Sense his death I have researched every drug that he was given time and time again. I have learned some very interesting and disturbing facts.

Nebulized Morphine has just been used for a few years. There are mixed feelings about the advantages of using it. It is prescribed to relieve shortness of breath not anxiety tho I can see where that would be a side effect if it works. I also read that it is not recommended for use because not only is there little evidence that it does any real good but the side effects can be dangerous and outweigh the advantages. There is also evidence that todays technology has not produced a nebulizer capable of delivering it to the lungs in such a way to cause relief and not serious complications.

If nebulized morphine is used there is a very exact protocol that is to be followed. The medication must be obtained and put into the cup by a nurse. The cup must have been well washed and the treatment administered by a licensed respiratory therapist. Before it is given the patient's vital signs should be taken and again after the treatment is finished. The patient is also supposed to be questioned about his reaction to it and any comments recorded in his records. The cup is then to be removed, washed and put in a plastic bag ready for the next use. Not one of those procedures were followed with Johnny. It was also administered by a small portable nebulizer not a gas jet set at 6 liters as required.

The Remeron that he was getting at a double the normal starting dose for a healthy younger person warns that it can cause flu like symptoms after seven days. It also warns about giving it with Morphine because it can be dangerous. Morphine warns about giving it with Atrovent because it can produce very dangerous side effects. It was given to Johnny not only while taking the Atrovent but in the same unwashed cup. There is also a warning that states that if a person has had an allergic reaction to any opioid that careful thought should be given before administering morphine and that the person should be closely monitored. The chemo that he was taking at that time was Navelbine. That also warns that it can cause flu like symptoms. The benadryl given before chemo warns against giving it with Morphine. Not only was Johnny getting a lot of medications that should have been watched for serious side effects but he was getting a very dangerous mix of them all. Any or all of those things could have been responsible for the cough and fluid sounds in his lungs.

[hope,proposal and improvement Part 3]

I woke around 6am and had my coffee and a shower. After I took Misty for her morning walk and made sure she had plenty of food and water I headed for the nursing home. The mornings were still very foggy so again I went through town instead of driving the interstate. I had called earlier to check on Johnny and he was getting ready to eat his breakfast. Breakfast was never a meal that I had to have and without Johnny home I just skipped it entirely.

By the time I arrived he had finished his breakfast and was ready for more coffee. I searched for and found a coffee pot and got us each another cup of coffee. We were having a leisurely conversation really not talking about anything important when Johnny spilled his coffee on the bed. It upset him because he was just starting to take a drink and his hand shook with no warning. I wiped it with paper towels the best that I could and thought that later when he was out of bed for a while his bed covers would be changed.

The activities directer came to his room to see if there was anything that he would like to have. She offered games and radios as well as tapes. I told her about Johnny's talent for the guitar and she said she had a very nice tape of guitar music and asked if he would like for her to get it for him. He was pleased by the offer and told her that he would like that. He also requested a clock for the wall so he could see the time. His watch hands were hard for him to see because they were gold against a white background. When he requested the clock I knew exactly why he wanted it. He wanted to make sure that he knew when the Vicodin was due.

I went to the nurses desk to ask if she had heard anything about a counselor for him. She told me that she had heard nothing. I also asked her if they were going to try to ease him off of the Vicodin. I was told that there were no orders for that. She would have to talk to his doctor about it before she could do anything. I voiced my concern about the amount of acetaminophen he was getting. I had heard that it could be very dangerous to the liver. She assured me that he was in no danger. According to her the Vicodin only had 350 milligrams of acetaminophen.

Earlier that morning I had decided that I needed a few hours away alone for a while. I wanted a nice quiet meal and thought about starting my Christmas shopping. Johnny didn't object he was concerned because I looked very tired. I had been under a tremendous amount of stress and it was showing. I wasn't really concerned about leaving him because he looked better than he had the day before. He still didn't look as good as he had a few days earlier but he didn't appear to be so tired as he had.

I made sure before I left that the nurse had my cell phone number and told her that if he needed me for anything to call right away. On my way home I changed my mind about going shopping. I almost turned around and went back to the nursing home. I felt like I should be with Johnny. I thought about it but decided that I really needed time alone to give both my mind and body time to relax. Going shopping just seemed to be more than I was ready for. I needed a way to rest my mind. Something that I could do that required little if any thought or activity. I found the perfect solution. There was a casino about 15 miles from the hospital. I knew where it was but had never been there. I could have a good meal and play the slots for a while. That was something that I enjoyed and it always helped me to relax.

I got there around 11:30. By 12:15 I was playing a slot machine. I wasn't losing but I wasn't winning either. I found it boring so decided to move. I sat at a machine and put $20 in it. I had been playing for about ten minutes winning a little then losing it. Most of the $20 was still there for me to play with. That was when I felt my phone vibrating in my purse. I knew that it had to be either Johnny or someone calling about him. I asked the lady next to me if she would watch my machine. I explained that I had someone in the hospital and had to check the message on my cell phone. She agreed and I went outside to check. You are not allowed to use cell phones in casinos.

I saw the message was from the nursing home and called them back. The nurse told me that Johnny had had an anxiety attack and was asking for me. I told her that I was on my way and would be there within a half hour. I went back to get my money only to find it gone. The lady watching my machine said someone had sat there but she had told them it was taken. Apparently that person stayed just long enough to take the ticket with my money on it.

By the time I got to Johnny he was doing alright. He said the attack hadn't been real bad but the nurses didn't know how to handle them like I did. He felt more comfortable with me there. I wasn't going to object. He seemed to be doing better and I had promised God that I would not lose patience with him again. When I saw the need in his eyes my heart ached. I knew that I had to be with him. I needed him as much as he needed me.

I was looking at the papers we had been given when I noticed that there was a hair stylist in the nursing home. They were closed on Monday but would be open the next day. I told Johnny that I thought it was time for him to have a hair cut. That made him happy. He had always been very vane about his hair. The chemo treatments had caused him to lose about 2/3 of his hair but that left him with quite a bit. New hair had started to grow and was coming in fine and frizzy. He was constantly wanting the brush and a mirror because he didn't want his hair standing up. He said he didn't like having the "frisbies". It had been years sense he had had anyone cut his hair besides his daughter-in-law. It was past time for him to have a professional cut.

I had noticed several weeks earlier that some of the new hair that he was getting was coming in black. He had had black hair when younger and that had turned to silver. The chemo had turned what he had left snow white. Those black hairs thrilled him and gave me a reason to tease him. I told him that if he got too much black hair I was going to dye it Grey because I didn't want him looking younger than me. I hadn't forgotten how women were attracted to him.

We had our evening meal in his room again. There was a television and we watched a couple of animal shows. They were his favorite. Johnny loved animals especially dogs. Other than the few years he spent in California after getting out of the army he had had a dog all of his life or at least most of it. We would often watch those shows at home. If he saw an animal injured in some way he would say "sadness" and change the channel. He had a very soft heart.

It was nearly time for his bedtime medication and I was preparing to leave early that night. He was doing well and I was still very tired. He told me that he wanted to talk to me about something before I left. I sat on the side of the bed with him. He said " I want you to go home and get on the computer and find another treatment center for me. My doctors have given up on me and I really don't expect them to do much for me anymore. I really don't trust G. I think that he is mad because we went behind his back to get the Paxil." I could see how worried he was and I knew that was at least part of the reason he looked so haggard. I felt the same way he did by then and I had good reason.

Sunday morning before we had left for the nursing home I had seen G. at the nurses desk. I wanted information and tried to talk to him. I asked him how bad Johnny's condition was. He told me pretty much the same thing he had told Johnny the day before. I asked him what he was basing that on had the ex ray shown it was worse than when diagnosed. He answered " I haven't compared them yet." I asked "how does it look compared to his CT scan. Again he answered "I don't know you can't compare an ex ray to a CT scan". One again I asked if he was as bad as when first diagnosed. I got no answer he just brushed off all of my questions. I had a right to have those answers. When Johnny had first gone to them in July he had to fill out a paper saying who he wanted to have information about his condition. He had put my name.

I assured him that I would start searching that very evening. I told him that I had some paperwork to do for my insurance and his food stamps but as soon as I was finished with them I would search until I found a place that looked promising. He was satisfied with my answer and told me to try to get done early and get some rest. His medication was coming and he would be sleeping so I should leave for home. We kissed good night and I left him just as the nurse brought his medication to him.

It was around 8:30 when I got home. I sat at the table for a minute looking at the papers that needed filling out. I couldn't get the picture of Johnny out of my mind when he was talking earlier. I was very disturbed by his treatment and the attitude of the doctors and nurses. They had known about the anxiety right from the start and had done nothing for him. They knew about the addiction to the Vicodin and still after five days had done nothing to try to help with that. Everyone that talked to me about him talked like he was a "dead man walking". I couldn't and wouldn't accept that. I knew how well he had done when he thought he could beat the cancer. His condition had only declined when his hope had been taken away. I decided to leave the paper work go until the next night. I went to my computer and began my search.

I typed "cancer treatment centers" into the search window. One of the first things that came up was Cancer Treatment Centers of America. The Seattle Cancer Treatment and Wellness Center was one of their clinics. That is when I remembered the words of the Chaplin. I started reading and the more I read the better I felt. They offered many different kinds of standard treatments and variations of standard treatments. They also addressed the issue of nutrition and it's roll in the treatment of cancer. They offered emotional , physical and spiritual help. They also stated that they never gave up on a person until that person was ready to give up. There were several testimonials by people who had been treated by them and cured. Some of them had had lung cancer. I read their stories and my heart lifted. I knew that I had found what we needed. HOPE.

There was a place to write a letter and send it by email. I wrote to them giving them a detailed outline of Johnny's case. I told about his diagnosis and how well he had done during chemo even gaining thirty pounds. I mentioned the 50% shrinkage and his attitude that he would beat the cancer. I also told them about the nurses remark and how the anxiety had started and not been treated for a month. I explained about the addiction to the Vicodin and his phobias about the bathroom and sleeping. The fact that his doctors had given up on him was part of my story too. The last thing I wrote was a question "do you take Medicare"?

I had asked about the Medicare because I didn't want to get our hopes up only to learn that they wouldn't accept Medicare and we could not afford their treatment. I sent the letter expecting to hear from them sometime the following week. I also feared that they would tell me that they didn't accept Medicare. I knew they had what we needed but I had gotten my hopes up so many times in the past months and then had them taken away. I wanted to believe I had found the answer to my prayer but experience told me to be cautious. I decided not to mention anything to Johnny about it until I had heard from them one way or the other.

It was late by the time I finished the letter so I called to check on Johnny and then went to bed. I had a feeling that somehow I had found the answer to our problem but I wouldn't let myself get excited, still it was on my mind when I fell asleep and when I awoke the next morning.

When I checked my email the next morning I had a message from a man at Cancer Treatment Centers. He said that they were very interested in Johnny's case and had just a few more questions for me to answer. They wanted to know Johnny's age, if he could travel, where we lived and if he had family to support him. I sent the information back to him. I was honest with him. I told him that Johnny did have sons close by but they had not been any help nor offered any support. I said I hoped that wouldn't mean that they wouldn't see him.

I got to the nursing home early that morning. Johnny didn't ask if I had found a new treatment place or a new doctor so I said nothing about what I had been doing. I knew that he could not take another disappointment so I was determined to wait to tell him.

I noticed that his bed had not been made and the coffee stained sheets and blanket were still on his bed. The flowers that I had bought him had lost a few of their petals and some had fallen onto the nebulizer. The full urinal was sitting by his bed. No one had emptied it. I had been told that his input and output was being measured so I was not to empty his urinal. I had to ring for someone to empty it. Later that day they brought another one to him. Instead of one he had two. Often they were not emptied until both of them were nearly full. I straightened his bed while he was sitting in the chair.

I called the hairdresser to see if she could cut his hair that day. She told me to bring him as soon as I could. I asked directions and got them then helped him get his clothes so he could get dressed. I also helped him take a sponge bath.

To get to the hairdresser we had to go to the front of the building. Just past Johnny's room was a set of double doors. They could only be opened by putting in a code on a keypad on the wall. We found the hairdresser and Johnny talked the whole time she was cutting his hair. He seemed to be in a better mood than he had been in for several days. Often he would tell a joke or something funny and we would all laugh. I was sitting across the room from him. While she was cutting his hair I noticed that he had so much black hair on the back of his head that I could see it from where I was, about eight feet from him. As she continued to cut the more visible those black hairs became. I commented on it and teased again about dying it Grey. He really thought that I was just teasing him but she assured him that he had a very large amount of hair that was coming in black.

It was still a while before lunch so after his hair cut we went to a small waiting area near the main office in the front of the building. There was a large parrot there and a cat and dog that were allowed to wander the building. Johnny not only enjoyed the animals but liked being able to see out to the street. One of his favorite things was still watching the people pass and wondering about their lives.

We had our lunch in his room again and I was told that after that day I would be required to pay for my meals. I asked where to go and was given directions to the kitchen. I paid for my meals for two days. Later that day Johnny ran out of water and wanted ice water so I asked for it to be filled. I was told that they had no ice on the ward where he was but I could take his pitcher to the kitchen and get ice. I would do that everyday after that.

At 1:00 o'clock Johnny asked for his Vicodin. The nurse came with two of them. He told her that he was trying to cut down on them and asked for only one. She gave him the one and left with the other one. He was doing fine for a while then he told me "I just can't do it. I need that other pill." He rang for the nurse and when she came asked her for the other pill. She refused saying "my orders are for one or two every three to four hours. Sense you didn't take both of them a while ago you have to wait for another two hours." He tried to argue with her but she wouldn't budge.

He started getting more and more upset. I thought he would go into a major anxiety attack but he didn't. Instead he got very angry. I had never seen him like that and it really frightened me. His Bible was on his bedside table. He picked it up in both hands and raised it over his head. He was shaking when he said "God's wrath on whoever wished this on me." He was just so angry and continued to mutter and curse for nearly the whole two hours while waiting for the time his next pills were due. I just sat with him and said very little. I knew how to handle the anxiety attacks but had no idea what to do for him under those circumstances.

At 3 o'clock the nurse brought him his Vicodin. She brought both pills and stayed to make sure that he took them. He took them eagerly. There was no way he wanted to go through what he had just been through again. In less than five minutes he was perfectly calm. You would never have guessed what the last two hours had been like. He never mentioned his anger but he made up his mind that he would not have to face a situation like that again. I would learn later that night what he had in mind.

After he had calmed down he called his son for the second time that day. He wanted him to bring the children to visit him.. He had been in the hospital and nursing home for a week and the only company he had had was me. When he talked to his son he told him that he wanted to see the children and it was time for some of his family to come and visit him. He told him they were a bunch of heartless b*****d's. It was his habit whenever he felt that they didn't care to use harshness to cover up how hurt he was by their seemingly lack of concern for him. Later he would call a third time. That time he was all but begging him to come.

Once I saw that he had settled down and wasn't having any real problems I decided to go home and check my email. I was anxious to see if I had gotten any more word from the man who had written to me earlier. I still hadn't said anything about it to Johnny so I just told him that I wanted to go walk Misty and make sure I had put her food and water. When I left he was settling down for a nap.

I couldn't believe my eyes when I saw the message waiting for me. The same man had written to me. He told me about the center in Seattle and told me that they would like to try and help Johnny. He gave me a number to call and the name of a lady to talk to. He said that I should call her as soon as possible and set up an appointment for him. My heart was soaring. Finally I had what we needed but there was one question that he hadn't answered and I had to make sure of that before I went any further. I called the number that he had sent me and got another surprise. I didn't get a computerized menu nor was the phone answered and me put on hold. A woman answered and I asked for the lady I had been told to talk to. She was the one who had answered the phone! I was really starting to get excited.

I told her who I was and repeated most of Johnny's story to her. Then I asked if they took Medicare. She told me yes they would take his Medicare and Medicaid. She also said that if there were any costs that were not covered they had a board that would review the case and if they saw a real need the treatment center would eat the rest of the cost. She told me that we would need to get all of Johnny's medical records to take with us to the center. She said that they were booked up for the rest of November but she would put a packet of information in the mail for me the next day. I was told that there would be a form there for us to fill out and that after the first I was to call and make an appointment for Johnny. They would set him up for a consultation and decide what they could do for him. Not if they could do anything for him but what they could do. After over two months of hitting my head against brick walls I finally had what I had been hoping for. A new chance for Johnny and HOPE for both of us.

I remembered my prayer that Sunday morning and I knew that God had heard me. He had sent what I had asked for. Everything had fallen into place so well it could be nothing but the answer to my prayer. I had asked God for a way to help Johnny and when I had been at my lowest that Chaplin had been standing down the hall watching me. He was the one to first mention the Seattle Cancer Treatment and Wellness Center. That had been the first thing I found when looking for a new treatment center and my emails had been answered in record speed. Instead of a computer or being put on hold my call had gone right to the woman that I needed to talk to. Surely those things didn't happen by accident. I just knew that God was answering my prayers and Johnny and I would have the chance for the life that we wanted so desperately. Time to make up for some of the years apart.

I was so excited and couldn't wait to tell Johnny. I knew that it might mean a lot of changes in our life and I may have to do things I hadn't done before but that didn't matter. I had found a way to help save Johnny. I was certain my prayer had been answered and Johnny would get better maybe even well. I wasn't looking forward to driving to Seattle. I had heard the traffic was terrible but I had heard the same thing about Portland and Johnny had helped me through there with no problems. I knew he would do the same in Seattle.

On my way out the door I grabbed a bag of peppermints that I had bought. I loved the cool taste of the mint mixed with the chocolate and thought that Johnny might like them too. All the way to the nursing home my mind was full of the things that we would need to do. I knew there wasn't much chance of getting anything done until after the Thanksgiving holiday but I could start planning. The first thing we would have to do was get his medical records.

At first I was a little disappointed by Johnny's reaction to my news. He was interested but not nearly as excited as I had thought he would be. Not nearly as excited as I was. He kept asking questions trying to find something wrong with the information that I had. It wasn't long before I realized that he was doing the same thing I had done. He wanted to make sure of everything before he got his hopes up. Like me he had been disappointed too many times.

One of the aides came to his room and he asked if he had ever heard of the Cancer Treatment Center in Seattle. That man told him "oh yes my Uncle went there. They are wonderful they cured him and he is fine today." After that I could see that he was starting to hope but he was still cautious. Each person that came to his room he would question. Every answer he got was the same. It seemed that everyone either knew someone or was related to someone that had been helped or cured there. With each answer I could see the light in Johnny's eyes getting brighter. That light had been gone most of the time for the past two months. Seeing it again made me happier than anything I had known in weeks.

That night he wanted to go to the dining room for super. There were about twenty people there some he had met and others that he hadn't. He seemed to enjoy talking to them and having people recognize him and wave to him. He was just such an easy person to be around that people were drawn to him. I could tell that he still had the knack of attracting people.

We were about half way through our meal when I head children's voices. Voices that I recognized so I had him stop and listen too. As they passed the dining room I called out to his son and he and the two children joined us while we finished our meal. I remember they had some place mats with pictures on them. His little two year old grandson liked the pictures and stayed occupied playing with those place mats while we finished eating. Johnny asked me to see if I could find some for him like those the next time I went to Wall Mart.

It was somewhere between six and six thirty when we got back to Johnny's room. He was starting to get a little edgy and I knew why. His Vicodin would be due at seven. After we were settled in his room he asked his son why he hadn't brought his daughter-in-law. Johnny was very close to her. Like me she loved and accepted him exactly like he was and he loved her for it. I spoke up and said "Johnny you know that she is working and couldn't come". He turned to me and said "Can't I even ask my son a question without you interfering?"

It took me a second to respond. He had never said anything like that to me and I was very hurt and upset. I had vowed that I would not lose my temper with him again but it was hard to hold it in. I just looked at him and told him " I don't have to take that from you and I won't. If you need me I will be outside. I'm not going to stay here and let you talk to me like that." I went outside to cool off and gather myself together. I knew that it was the need for the Vicodin that was effecting him. That, after what I had seen happen the day before made me realize that his addiction was no longer only mental.

I hadn't been outside for five minutes when I decided to go back in to him. His son met me at the door. He said "Dad is asking for you. He was worried wondering where you are." I told him that I just had to cool off for a minute and I was alright again. When I got to his room Johnny moved over so I could sit on the side of the bed with him. His son told him that he had better treat his lady right and Johnny said "I know" and squeezed my hand.

They couldn't stay long because he had to pick up his wife from work. They said goodbye and left and soon after the nurse came with his Vicodin. She brought two of them and handed them to him. She stayed to make sure that he took them both. As soon as she left he took the second pill out of his mouth. He told me that he wanted to slow down on them but wanted to make sure that if he needed it he had it. To keep anyone from seeing it he wrapped in in his bed covers.

There was no problem from not taking that second pill but I was worried. What if he woke in the night and took it not realizing that he had already taken two of them? My fear of an overdose told me that I needed to do something to protect him. Before I left that night I straightened his bed and found the pill and put it in the waste basket. The next day when he looked for it he thought that it had fallen on the floor and got swept away or that someone had seen it and removed it. I never told him anything different.

He ate the mints that I had taken from home. Not just a few of them but nearly the whole half or more of a bag. He decided that they were so good that he wanted more and asked me to get some more and bring with me the next day.

Not long after he had taken his Vicodin he asked me to sit on the bed with him. He told me that he needed to talk to me about something. He said "I know that I get grouchy sometimes and say things that hurt you. I want you to know that is not me saying those things. It is the anxiety and the medication. I would never say anything to hurt you intentionally." I told him that I understood. Then he asked if I was mad at him. I told him "no, I'm not mad at you. I'm mad at the situation. I wish sometimes that I had someone to kick around it gets so bad. He said that he understood what I was saying because he felt the same way.

One of the nurses aides came into his room while we were talking and overheard our conversation. She told me that a therapist had told her or one of her friends to go to Goodwill and by an old doll then take it home and beat and stomp on it until she got rid of some of her frustrations. I thought that was a good idea and said so. I told Johnny that when I got a chance I might do that. As it turned out I never got the chance. Things moved much too fast and now it would take a train load of dolls and still my frustration would not go away.

After the aide left us alone he continued talking. He said "you do know that I have a lot of emotional problems don't you?" I told him that I did know that and I believed that 90% of his problems were emotional. He told me that I was right. There was a pause in our conversation for a few minutes then he said " I want to ask you to marry me". I told him that he didn't even need to ask that I wanted to be his wife more than anything. Then he said "but not now after I am better. I have a special day all picked out but I won't tell you now because it is a surprise." He didn't have to tell me. I know that he was talking about Valentines Day. He had said that Valentines Day was our day because it was a day for lovers and we were true lovers.

Not long before that night he had said to me "you do love me too don't you?" I had answered "you know I do with all of my heart". He said "that's good because I really need you to love me and someday I will tell you why". I have thought about that conversation many times. For a while I thought he had intended to tell me about all of the mistakes that he had made and the things that he felt guilty about. I realize now that I was wrong. He just needed to know that I loved him before he would ask me to marry him. He had been in marriages without love and knew the harm they could cause. That also explains why he had asked me nearly everyday for months if my final divorce papers had arrived.

Twice he had wanted to marry me. Each time he didn't realize that he was enough for me. I would have married him under any circumstances and no matter how little we had to start out. He was what I wanted not what he could give to me. I just wanted him broke or sick it made no difference but he always felt that he had to offer me more.

I asked him that night why he had changed his mind. When we had first gotten back together he had told me that he would never marry again. He had had too much pain from marriage and didn't want any part of it again. That night when I asked him why he said "because it feels right. This time I would be marrying for the right reason because we love each other." I wish so much that I had said "why wait let's get married tomorrow". I didn't have my final papers but my divorce was final by then. Had we married I would have been the one making decisions. I knew exactly what he wanted and I was with him all of the time. I was the only one that knew what his condition and our situation was. Because we were not married I had no rights and that cost us both dearly.

I also know one of the reasons why he had said "when I get better". When we had the conversation about him not wanting to marry again we had talked about our situation. We had agreed that if a time ever came when someone tried to break us up by taking control of the other one that then we would marry. That way we would be in charge of each other. He told me that day and many other times that he would never want to have to trust one of his sons in a life or death situation.

He wanted to make sure that I knew that he wanted to marry me because he loved me, not just because he needed me. He also wanted to be better so our physical relationship could start again. He felt that he was somehow cheating me if he married me while things were like they were. I have little doubt that had he not finally found hope again he would never have asked me to marry him.

I felt better than I had in weeks. I was certain that the following week we would get started on the process of getting him into the new treatment center. I was also thrilled because he had asked me to marry him. I felt like our lives were starting to fall into place. Fate had cheated us one time but finally we would be given a chance to make up for that.

When I got home that night I talked to Pam and told her our news about the treatment center. I also told her that I wished that I could print the stories of survival that I had read but my printer was still broken. I had no way to print them. She told me that she would find them and print them for me. They would be in the mail the next day.

It had been a long eventful day and I was very tired but it was a different kind of tired. I wasn't tired because I felt so helpless any more. I still had trouble falling asleep because I missed having Johnny to snuggle. He hadn't known how right he had been when he said that I was getting to like to snuggle more and more. I felt better tho because I knew in just a few more nights I would have him home with me again.

Wednesday morning he looked great. The hair cut was keeping his "frisbies" under control and he had that light in his eyes again. He looked fifteen years younger than he had just a few days before. He was just finishing his breakfast and told me that he hoped they brought the snack cart around because he was still hungry. He finished off the few mints that were left and asked if I had brought him more. I told him that I hadn't gone to the store but I would be leaving for a while that morning to do some shopping and would get them then. I planned on starting my Christmas shopping that day. He was doing so much better I had no worry about leaving him.

Once in a while he would wonder out loud if the treatment center was in a good part of town and not a run down part. He had his hopes so high by then but in the back of his mind he was still afraid that there would be something wrong with the place. He decided that when Tom called he would ask him. He lived not far from there.

While we were talking he told me that he was getting better. He said "I know I am getting stronger. I can feel it". I assured him that he looked better than he had in weeks and teased him about looking too young for me. It amazed me that the black hair on his head was getting much easier to see.

I left him and went shopping for a while. I bought his mints and Christmas cards and a couple of presents. I also bought decorations for a Christmas tree. I planned on making Christmas very special for us. I wanted him to have the kind of real family Christmas that he had always wanted. I hoped to somehow get all of his family together at least once and cook a Christmas meal for us. I wanted presents under the tree. I dreamed of waking up Christmas morning knowing that there were presents under the tree but that we already had the best gift of all. Each other.

I was gone about two hours. I didn't want to stay for too long because he had chemo that afternoon at two. I wanted to have lunch with him and make sure that he got cleaned up and shaved for his chemo appointment.

Before I went in to him I had one more thing to do. I knew that once we got to Seattle one of the main focuses for Johnny would be emotional counseling. I needed as much information as I could get if I were to be able to help him. I knew that many of his problems stemmed from his childhood and his dad's mental condition. Johnny had told me many things about his childhood but he had always tried to protect his dad's memory. He made excuses for his behavior and I suspected things had been much worse than he had told me. I also knew from some of his recent remarks that he had a very deep faith but because of that faith he was very frightened. I knew that his greatest fear of dying was because he was afraid that he would go to hell because of the mistakes he had made.

The night before I had sent an email to his Uncle Lou. I had told him that I had found a way to help Johnny but to do it I needed information. I told him that I would do anything it took to help him even if that meant being nosy and asking questions about things that Johnny might consider private. I also told him that I would call him the next day and talk to him about those things. Sitting in the parking lot at the nursing home I knew it was time to follow up. I called Lou.

I asked questions about Johnny's childhood. I wanted to know just how bad his dad was and if he had ever been physically abusive to Johnny. I also wanted to know just how much of a role religion had played in his family and his life. I was told that his dad had mental problems and Johnny had a very hard time as a child. I was also told that he had been very deeply religious. Lou told me that there had been times when most of the kids would want to skip Sunday School and Church but Johnny had always been on the bus. He never missed even when the other kids didn't go. By the time we finished talking I had a pretty good picture of his childhood. The information that Lou gave me along with what Johnny had told me himself painted a very sad picture. I was understanding the man I loved more and more and the more I did the more my heart ached for him.

We had lunch then I helped him get his bath and shave. He didn't feel like getting dressed so he wore his robe. I don't remember if he had his pajamas or a hospital gown. I'm pretty sure that I had taken his pajamas from home for him but I just can't remember for sure. I had to transport him in our car so I pulled up to the back door and an aide helped me wrap him in blankets and get him and his oxygen into the car. Shortly before we left he took his two Vicodin. He said that he wanted to make sure he didn't have an attack while at the doctors office.

On the way to the doctor's office he reminded me that we were not going to mention anything about the treatment center. He was afraid that they would try to talk us out of going or stop treating him while we waited. He just didn't trust them anymore and said that he didn't know how they would react if they found out.

By the time I got him inside he was complaining with a headache. I realize that a pattern had started. He would take the Vicodin and less than a half hour later he would complain of a headache. I asked the nurse if she could get something for his headache and she brought him two Tylenol. Despite the headache all of the nurses and the receptionist commented on how much better he was looking than he had been.

His headache was gone in just a few minutes. We were called to have his blood work and I went with him like I had always done. When the readout was done I again questioned the nurse about his counts. His platelets were normal in the 300,000 range. His red cells were a little low but not too low. His white count was a little high but not as high as it had been the week before. His white cells had stayed high during the whole time that he was taking chemo.

When called to go in to see the doctor we stopped so he could be weighed. He had gained weight sense the week before. Johnny was very pleased to see that he would be seeing Dr.O. that day instead of G. He had some questions to ask him. The nurse had taken his blood pressure, temperature and oxygen saturation. Both blood pressure and temperature were normal. His oxygen level was either 93 or 94. There was no sign of infection so Dr.O. told him that he could go on to chemo.

Johnny asked Dr.O. if he could be his doctor from then on. He had never gone to J. because of his remarks about the DNR and he no longer trusted G. Dr.O. told him that he would be his doctor but that he had to understand that they had several clinics and moved around a lot. There would be times when he would still be seeing one of the other doctors. The only thing that Johnny heard was "yes". Then he told Dr.O. that he was trying to cut back on the Vicodin but if he didn't take two when he asked for it the nurse wouldn't give him the second one if he needed it an hour later. Dr.O. said that he would change his orders so that he could take only one and get the other one later if he needed it. The last thing that Johnny requested was that Dr.O. make sure that the nursing home knew that he was there by his own request and that he was free to leave whenever he wanted to. Dr.O. agreed and told us that he would send a FAX making sure they were aware of that and the changes in his medication times.

Johnny was a little nervous about chemo that day. He was on the verge of having an attack and a nebulizer was made ready for him to use. I saw that the nurse that day was the one who had started our problems with his remark. I made up my mind that I was going to talk to him and tell him what had been going on and ask for him to talk to Johnny and try to help. I learned that his dad had died that past week. I think that made me think that he would be extra sensitive to Johnny's problem. I think I made a big mistake. He was starting the IV and I told him that Johnny was worried and I was too. I explained that we felt that Dr.G. had ordered a chemo drug that he didn't think would help. He told us that was not true. He said that different drugs work different on each person. The Navelbine had as good a chance of working as the Taxol/ Carboplatin had.

Johnny seemed to relax after that conversation and like always he fell asleep. I sat in the waiting room waiting for the nurse to pass. I had made up my mind to talk to him and I intended to do it that day. He was on his way through the waiting room when I stopped him. I told him everything that had gone on sense the day he had made that remark to Johnny about being on chemo for the rest of his life. I told him about the Vicodin and the phobia about the bathroom. I told him that Johnny needed someone to talk to him and encourage him again. He listened and seemed genuinely concerned especially about the part he had played in Johnny's decline. He made a couple of remarks but at the time I was more interested in the fact that he wanted to help. Later I would see that his remarks should have been a warning. After we finished talking he told me that he had to go to the doctor's office for a few minutes but for me to make sure that Johnny didn't leave until he got a chance to talk to him.

After the chemo was finished Johnny complained of a little heartburn. He also needed to urinate. The nurse used the heartburn as an excuse to go into the bathroom with Johnny. I waited in the waiting room but could hear their voices. They spent about five minutes in the bathroom talking. They came out and Johnny never had an attack. That was the first time he had been in the bathroom to urinate in two months and he did it without having an attack. I thought the nurses talk had helped him. I was to learn different once we got to the car.

I asked what the nurse had said to him. He didn't tell me much of the conversation but did tell me that he had given him a poem about "living on borrowed time" he had also told Johnny that the worst thing he had to fear was dying. I went to him for help and he knew that Johnny was suffering from extreme anxiety because he was afraid of dying. Had it not been that Johnny had already decided that they had given up on him and put his hope somewhere else that nurses remarks could have caused more damage than the first ones had. I would come to believe that my conversation with him led to something that was so damaging that it cost Johnny his life.

He was too upbeat that day to let the nurses words get to him. If he had had any doubts about going to Seattle those doubts were erased by that nurses words to him.

When I had started trying to talk to him about what had started the anxiety he wouldn't talk about it. He got so whenever I would try to get him to think about what had started it or to start him thinking positive again he would tell me that I talked too much. At first it hurt my feelings but I saw the reason for it so most of the time I didn't let it get to me. There were times when it did upset me but that never lasted for long. When he would see that I was hurt he would apologize and say "I know you just need to talk. You spent so long without anyone that you could really talk to but there are times I just need you to sit with me and not say anything. I don't mean to hurt your feelings. That is just the way I am."

I think about his words now and wish that I had listened closer. I know that I did talk too much and at the worst times. If I had not asked the question that day in that small room about another chemo drug the conversation would never have led to that nurses remark. Maybe the anxiety would have never started. Then there was the night I tired to talk him into taking back his prayer for God to punish whoever had wished the cancer on him. If I had just let it go our weekend would not have been spoiled and my mood would not have helped make the anxiety worse. I really regret those things but the words I regret the most are the ones I said to the nurse that day at chemo. I had found what Johnny needed. I should have just let it go and waited for help at the new place. Instead I said things that I feel led to the treatment that started the process that killed my Johnny.

When we got back to the nursing home Johnny told me that he was feeling so good that he wanted to go home. The next day was Thanksgiving and we had already ordered a dinner for me to have with him. I talked him into staying until Friday.

I know that by then he wanted nothing else to do with any of them. He was ready to move on to CTCA. He didn't trust the ones who he had been going to or anyone who had anything to do with them. I should have seen that. I should have taken him home but I didn't and now I live with the knowledge that had I he might still be alive or at least would have had more time to live and a chance to fight like he wanted.

The reasons I didn't want to take him home that night seem so simple on the surface but I know that my reasons were much more complex and even selfish. We had already ordered my meal for the next day to share with him. I used that as the reason but deep down I knew it was more. I was selfish. I wanted him all to myself that day. I knew that if he left there he would want to spend the holiday with his son and it ate at me. I was so mad because they never called or came to see him. He begged so many times but they just didn't come. He made himself worse trying to get their attention and I saw it and knew and I resented them for that.

They did nothing for him and I did everything. They showed him no love and concern but I told him and showed him constantly how much I loved him. Why should I have to share our holiday with them? My God how it hurts to know that I let those feelings keep him there. How it hurts to know that the old jealousy mixed with my feelings of outrage at their treatment of him made me talk him into staying there. Had I taken him home that night he would never have been given that damn morphine. He would have not ended up in the hospital and they could not have drugged him into a coma and just let him die!!!!!!!!!!!!!!!!!!!!!!! I have to live with that everyday of my life.

[Part 2 --Lies, preminition and dispair]

When he asked for his Vicodin that night the nurse gave him only one. She explained to him that it was only safe to have 4 grams of acetaminophen in one day. That meant only 8 Vicodin because there are 500 milligrams of acetaminophen in each one. He understood and didn't question getting just one. He took it and never had a problem.

We had been there two full days after his talk with the social worker. He had not seen a councilor yet. I saw the social worker on his floor and spoke to her for a minute. She told me that she was very busy but assured me that she was working on Johnny's problem and hoped to have a councilor for him soon.

That night was rather non eventful. Johnny did awaken a few times but slept well most of the night. I slept too. The only time I opened my eyes was when I heard Johnny awake or one of the nurses came to take his vital signs. He used the urinal by himself so needed no assistance to go to the bathroom. The bathroom was only about 4 feet from his bed but there was no way he was going in there. He used the urinal all of the time.

After Johnny had his breakfast Saturday morning I left to go home for a while. I had to take the dog out for a while and make sure that she had food. On our way to the doctor's office that Wednesday we had noticed that my blinker lights were not working. It was foggy most days and Johnny was concerned about me driving without working blinker lights. He was afraid that someone might not see me stop to turn and hit me from behind. On the way home that morning to care for Misty I stopped and had my blinker lights fixed.

When I got back to the hospital I noticed that Johnny was quieter than usual. I knew that something was bothering him. He told me that doctor G. had been in to see him and so had the social worker. The arrangements were made for him to go to a nursing home. He had hoped to go to the rehab unit where he had gone in July but they were full. Instead arrangements were made to send him to a nursing home across the street from the hospital. I was still very upset about him wanting to go there. I had hoped that he would change his mind. I thought that not being able to get into the rehab unit would make him change his mind but it didn't. The arrangements were all made. He would be transferred the following morning.

I suspected the change in nursing homes was what was bothering him at first but it seemed to be more than that so I questioned him. He told me that Dr.G. had came to see him. While talking to doctor G. about the nursing home he had told him that he just wanted to go there for a few days to rest and when he was better he would go home. He said that Dr.G. had told him "you aren't going to get any better, only worse."

I don't believe that a doctor should lie to a patient. I know that they see a lot and can become very hardened. I also know that the remark Dr.G. made to Johnny that morning was cruel and uncalled for. He knew that Johnny was having a severe problem with anxiety. He also knew that it had gotten so far out of hand because of his refusal to help when it had first started. Johnny had had only two series of chemo treatments and had just the one treatment of the third series. There was no way to know if that series would help or not. Each chemo drug works different on different people. There had also not been any recent tests to determine if the cancer was still progressing sense the last CT scan a month earlier.

I don't think that he should have lied to Johnny. That is not what I am saying. My point is that they had all seen how well he did when he believed that he could beat the cancer. They also knew that the attitude that they had shown him had started the anxiety problem. It would have been only right had he been encouraged after he chose to continue the chemo. If Dr.G. couldn't do that he should have at least kept his lousy mouth shut!

Even after being upset by Dr.G's words he still had a fairly good day. What little anxiety he did show was kept under control by the addition of the Xanax to his medications. I still believed despite G's attitude that Johnny would be much better once he had been on the higher dose of Paxil and the Xanax for a while. I knew that his major problem was the anxiety. I hoped that with that starting to subside that the Vicodin issue would be addressed and Johnny would once again be able to fight the cancer and show improvement like he had earlier.

Later that afternoon the nurse came to his room with the papers confirming his transfer to the nursing home. She also told us that Dr.G. had written prescriptions for the medication that he would be taking in the nursing home. I asked what they were and she told us they were, Prednizone, Marinol, duo neb(Atrovent and Albuteral) for the nebulizer, Vicodin, Paxil and Ativan. When we heard the name Ativan Johnny and I both told her that he could not take that. We explained to her that he had had an adverse reaction to it and that should be in his records. She left telling us that she would have to call his doctor and get the medication order straightened out.

When she returned a few minutes later she had disturbing news for us. Dr.G. had changed Johnny's medications. He had taken him off of the Paxil and the Xanax and ordered an antidepressant named Remeron for him in their place. When we asked why the nurse told us "if he can not take Ativan he can not take Xanax. They are from the same family and Xanax stays in the blood stream longer."

I have sense learned much about all of those drugs. Ativan and Xanax are both Benzadiapines. Ativan is much stronger than Xanax and has a half life (the time it stays in the blood stream) that is much longer than Xanax. The problems that Johnny had encountered taking it are very common and mostly dose related. Either Dr.G. knows nothing about the medications that he prescribes or we were told a deliberate lie. I believe it was the lie that we were told. Dr.G. had not wanted to give Johnny the Paxil right from the time we had requested it. It was an idea that we took to him along with Johnny's nurse. I believe that was the only reason for G's objection to it. By lying about the Xanax he found a way to end the Paxil. Once again I say he was thinking only of his damn ego!

Paxil is a drug that should never be stopped cold turkey. It should be stopped slowly because of the withdrawal symptoms that can be very serious. How much of a roll did that play in the coming days? Because we had gone behind G's back and got the Paxil after he had refused to give it to Johnny he had never trusted G again. He was afraid that G would be angry and take that anger out on him. At the time I thought that he was just being paranoid. I have learned that when Johnny said something he did it with good reason. Everything he ever told me has been confirmed in one way or another.

We were both very upset by the change in medications. In just three days we had seen a major improvement in the anxiety. Johnny was eating well and once again gaining weight. The chemo Navelbine had had no more adverse effect on him than the Taxol/Carboplatan had. He seemed to be having no problems with his breathing either. He seldom if ever complained of feeling short of breath. Had it not been for the issue of the Vicodin I would have thought that he was doing nearly as well as he had done in July after being in the hospital for a few days.

I keep referring to Johnny's disease as cancer because that is what we were told. At the time we believed that he had cancer but also still believed that some if not all of his problem was caused by the mold in the walls of his trailer. Because he never had adequate testing and because no cancer was found elsewhere in his body I have serious doubts about him really having lung cancer.

I have spent over a year researching everything that I can find about lung cancer.I have belonged to several message boards where there are both survivors and people still fighting lung cancer. Most of those people have one major primary tumor in their lung. Some have a few metesis to the other lung. Normally by the time lung cancer is found and staged as stage IV as Johnny's was it has spread to either the bones, spine or liver. No evidence of disease was ever found anywhere in Johnny's body other than the lungs. Most of the people that I have seen with cancer in those other sites have outlived the time Johnny had by two or three times. That goes a long way in saying the kind of treatment that he received.

As I said earlier I have researched fungus and mold exposure. Increased white blood cells is a sign of both fungus in the lung and exposure to mold. An adversion to odors such as Johnny had is also a sign of exposure to mold. One of the basic treatments for some lung fungus is Prednizone. One of the first medications given to him that July had been Prednizone. He had shown a rapid improvement even gaining weight well over a week before chemotherapy was started. By the time he had the CT scan in October that showed his nodules with a slight increase in size he had stopped taking the Prednizone because he thought that maybe it was causing the anxiety problem.

In the previous chapter during our conversation I mentioned to Johnny that he did need to clean up. I know that the way I made that reamek sounded not only cold but cruel. It is one of many regrets that I have. Still there is something that I want to mention that is connected to that remark and again to my suspicions about the mold causing his problems.

I have tried to describe the smell that nearly overpowered me when I went into his trailer. I just can't find words to really describe that smell. I have never smelled it before but I have smelled it sense then on many occasions and that smell is another part of the mystery surrounding Johnny's illness. The last few weeks of his life if he didn't bathe everyday and even sometimes when he did that smell was on his body. It was very distinct and I have no doubt what so ever that it was the exact same smell. It was also on his dog for months before it finally disappeared.

I mentioned earlier about the vacuum cleaner that he had having that smell. I was using it one day when Johnny's nurse came. I had her smell it and she told me that she had never smelled anything like it. After using our new vacuum cleaner in our apartment it picked up that same smell. Up until just a few weeks ago that smell would be present every time I used that vacuum. I even thought for a while that the smell might be psychosomatic. What I really believe is that what ever caused that smell in his trailer was in his body as well as Misty's. I also believe that the old vacuum distributed it to the carpet in our apartment and the new one picked it up from there. These are just some of the things that add to the questions I have about his diagnosis of cancer.

That Saturday night at 7:30 the nurse came to the room to check Johnny's vital signs and ask if he needed anything. She asked how he was feeling and he told her that he felt great. She asked if he was in any pain and he said "no". She left the room and he seemed to be fine. He was having no visible problem. At 7:40 he looked at the clock on the wall and told me that he needed me to go tell the nurse that it was time for his pain medication. I said "why do you want that? You just told the nurse not fifteen minutes ago that you are doing great and have no pain." His answer was "because it is time."

I reminded him that he had said he was not in any pain and he said "but I am now". When I asked where he said "all over".

I found the nurse and told her what he wanted. She reacted the same way that I did. When I asked if she knew that it was just his addiction that made him request the medication by the clock she answered "yes but if he says he has pain I have no choice but to give it to him."

She followed me back to his room and spoke to him. She asked "what do you need John?" He answered that he needed his pain medication. She reminded him that she had just asked a few minutes before and he had told her that he was not in any pain. He told her"but I am in terrible pain now between my shoulder blades". That is where he had the pain months before and had insisted it was from the old whip lash. He had not complained with it sense July. When she asked him to grade his pain on a scale of 1 to 10 he told her that it was at least a 6 or a 7. When he had been in the most pain in July he had never graded the pain as being more than a 4 or 5. She gave him the Vicodin and the "pain" subsided immediately.

It was not long after he had the Vicodin that he was brought his other medications. He was given the Remeron for the first time. He had had the 20 milligrams of Paxil that morning and the Xanax once that day. It was not ten minutes before he was asleep. He slept in one place not moving at all for 4 hours. Johnny was not a still sleeper. He would constantly jump while falling asleep. That would continue until he was in a very deep sleep. Even then he often jumped in his sleep. That night he never moved one time. I know because I couldn't sleep. I was still very upset about him going to that nursing home the next day and the doctors remark about him not getting any better. I spent the whole 4 hours that he was sleeping sitting up trying to figure out what our next move should be. Changing his medication that was working had disturbed me. I felt like there was something more that I should be able to do to help him and keep him from going to that nursing home.

It was a little after midnight when he woke up. His first words were "that medicine they gave me really messed me up". I said "Johnny why do you say that? that was the best sleep you have had in months." He said "no! it was the worst sleep I've had in years. They are trying to poison me with that medication. You all want to see me dead".

I couldn't believe what I was hearing. I had seen how sound he had slept. It just never occurred to me that was the reason for his remark. He was afraid to sleep that sound. Afraid that he wouldn't wake up. Because he had included me when he said "you all want to see me dead" I got upset. I said " I love you more than anyone does. I have taken care of you and done everything I can to help you. I have not slept good in weeks because you have kept me awake. I gave in and came to stay with you because your were afraid to stay here alone. Now you are telling me that I want to see you dead? I just can't take anymore of this. Call one of your damn sons to come and stay with you because I am going home." I stormed out of his room and drove home at 1 o'clock in the morning through the fog.

I was so upset that I didn't sleep at all that night. I was worried about him and angry at him for saying that to me. I was mad at his kids for leaving me in a position to do everything for him with no help either physically or emotionally. He had been in that hospital for three and a half days and not one of them had gone to see him. I was exhausted scared and mad. By morning I was ashamed of my behavior and left for the hospital at day break.

I got there intending to apologize for my behavior the night before. It was soon evident that there was no need. He didn't remember what had happened. He asked me where I had been. I just told him that I hadn't been able to sleep there and had gone home to get some rest. He never questioned me any further. It was then that I realized it had been the medication that had caused him to say what he had. I also knew that sleeping so hard had made him extremely frightened. I look back now and wonder if his remark wasn't because he had a premonition of what would happen to him.

He went back to sleep and I just couldn't stay in the room with him. I had been close to tears all morning. After realizing that he didn't remember the night before I just couldn't hold it in any more. I went down to the gazebo in the parking lot and sat there crying for a half hour. Then I started praying. I asked God to help me. I asked Him to give me the strength to do what ever I had to do to help Johnny. I begged Him to help me find a way to help him get better. I asked for forgiveness for my behavior and swore that I would do anything to help Johnny if He would just show me the way and save him.

I can still see that morning in my mind and feel the things that I was feeling that morning. It couldn't have been later than 7:30 or 8:00 o'clock when I sat there praying and begging God for help. It had started to drizzle and the day matched my dreary mood. I felt like the world was coming to an end and there was nothing that I could do to stop it.

When I got back to Johnny's room he was still sleeping. I just couldn't stay there and look at him. Just the day before he had looked better than he had in weeks but that morning he looked old and frail. I remember writing in the health journal that I had started that the anxiety was making him emotionally frail. That is what I saw that morning and it was just too much for me to stand there and watch. I walked out into the hall and once again I couldn't stop the tears.

The nurse saw me standing there alone crying and came to talk to me. She said "you need someone to talk to". I told her that I didn't think it would do any good and that I had no one. She saw the praying hands I wore on a chain around my neck. She took it in her hands and asked if I would speak to a Chaplin. I told her that I guessed that I would but couldn't see how that would do me any good. Nothing could stop the pain that was going on inside of me. She pointed to a man standing down the hall from us. She said "you see that man standing there he is the hospital Chaplin and he has been watching you. Do you mind if I ask him to come and talk with you?" I told her that I didn't mind and she signaled to him then left us alone.

We talked for a good while. He didn't tell me that Johnny was dying and I had to face that. Instead he asked me to talk to him and tell him what was going on. I told him the whole story about the anxiety and how much it had cost us both. I also told him that I would do anything to help Johnny but I felt like no one else believed that he would get better. He told me that no one knows what God's plans for us are. He said that we just have to ask God for help and strength to do whatever we are called to do. He said all of the things that you would expect a Chaplin to say. He had one more thing that he wanted to tell me before we parted. He said "I want you to promise me that you will call The Cancer Treatment and Wellness Center in Seattle. I had prostrate cancer and they saved me. There are many other people I know walking around today that wouldn't be if not for them. They offer the one thing that you and Johnny both need and that is hope. Call them and do it soon."

I don't think that I really felt too much better after our talk but I was able to go back to Johnny's room. When I got there I found him awake. He seemed to be more tired than ever and again I thought of the phrase I had used "emotionally frail". I stayed with him and again tried to talk him into going home instead of to the nursing home. He once again assured me that it would be for just a few more days of rest then he would be ready to go home. I knew by then it was useless to argue with him and neither of us could stand any more emotional upset so I just let the subject drop.

After he had breakfast he had to go to the bathroom. The doses of Milk of Magnesia were finally starting to work. He was nervous going into the bathroom but left the door opened so he wouldn't be closed in. He made out alright and was very relieved once it was over. He had been 9 days without a bowel movement.

An aide came to his room to give him a sponge bath but he refused. He wanted me to help him instead. I helped him shave and with his bath. He looked better once he had shaved but still looked much older and more tired than ever. Once we were finished with his hygiene he slept for a few more minutes. It was around 11:00 when an aide came to transport him to the nursing home.

He was dressed only in his hospital gown and his robe and it was very cold and foggy outside. We wrapped him in several blankets and the aide pushed his wheel chair and I carried his flowers and my purse. All of his other things I had in plastic bags and he carried them in his lap. Once we got outside Johnny complained that he was cold. We stopped for a minute in front of the door then continued on across the parking lot. We had to cross the parking lot then cross the street. Once across the street we walked on the sidewalk for a short distance and then up a very long drive way to the back of the building that the nursing home was in. By the time we got there I was freezing and Johnny was shivering badly.

When we got to his room his disappointment was obvious. The only experience he had with a nursing home was the rehab unit at the hospital. The place he was in now was far different. He would be sharing a room with another man so I would not be allowed to stay with him at night. Instead of a modern hospital bed he had one of the old ones that you had to crank instead of having electric controls. The call button for the nurse was clipped to his bed covers. There was no gas jet on the wall for his oxygen or nebulizer. He had a concentrator for the oxygen like the one we had at home. It too was very noisy but there was no place to move it to. It was right by the side of his bed. There was also a small portable nebulizer like the one we had at home.

He wasn't even settled into his bed when the lady came to check him in. She had several papers to be filled out. Johnny was very tired from the move and wanted to take another nap. I asked her if I could give her the information and she said yes. We went to a room down the hall from Johnny's room to do the paper work. I answered all of the question she asked and got very upset by the last question. I was also very thankful that I was the one who got that question instead of Johnny. They wanted to know what funeral home to call if he would die. I was so upset by that question and mad at his sons for leaving us alone to take care of everything. I felt that not only were they hurting Johnny but not living up to their responsibility. I knew that Johnny had no life insurance and his sons would be responsible for paying for his funeral when the time came. That is why I asked her witch one was the most expensive. She told me and I told her to put that one down on the paper. I figured that it would not be needed but if it was his sons would finally have to give something back to him.

There were some other papers that he needed to sign. I couldn't take care of those for him. The head nurse came to his room for him to sign those papers. While signing them he told her that he was coming there because he had asked to. He also told her that he would not be staying more than a week. When he told her that he would probably go home on Friday she told him to think about that because it would be a holiday weekend and he may not be able to get the things he would need if something came up unexpectedly. He agreed to think about it but told her that he would probably still be leaving on Friday.

We were asked if he wanted to go to the dining room for lunch and super. Johnny asked to take his meals that first day in his room. We also requested a meal for me. Our meals were ordered and we spent the rest of the day just relaxing. When he would nap I would go outside and make phone calls. I was very tired from not sleeping the night before but couldn't nap in the straight back chair that was in his room. I looked forward to going home to my bed that night but was very uneasy about leaving Johnny alone there.

When he asked for his Vicodin he was asked if he wanted one or two. Sometimes he would request two but other times he would ask for only one. He told me that he was trying to cut back on the amount that he was taking. No one had made any attempt to help with that. He had not yet seen the counselor promised either.

They gave him his Remeron and Marinol at 8:00 o'clock. I was worried that it might have the same effect it had had on him the night before so I stayed and watched him sleep. He seemed to be sleeping normally that night not as deeply as he had the night before. He woke around 10:30 and seemed to be doing alright. I told him that I was very tired and was going to go home. He told me that I looked tired and should go home and get some rest. I kissed him goodnight and left for home around 11:00.

I want to make an observation about the Remeron. I have found that it is not recommended for anyone in a weakened condition and especially for anyone with lung disease or over the age of sixty. If it is given to anyone under those conditions it should be started at half the recommended dose of 15 milligrams. Johnny was started at 30 milligrams. It also says that giving it with Benzadapines can be dangerous. The day before he had had Xanax during the day and then been given the Remeron that night. I strongly suspect that was the reason for his deep sleep and strong reaction to it. Later he would have another Benzadaphine given to him while the Romero was still in his blood stream.

I drove the long way home that night. It was extremely foggy and I was so tired that I didn't want to chance taking the interstate. I was not comfortable driving with all of the large trucks on the highway under those conditions. When I got home I took Misty out for a few minutes then got on the instant message with Johnny's niece Pam to update her on what was going on. I stayed for a few minutes then called to check on Johnny before I went to bed. He was sleeping again and I was told by the night nurse that he was doing fine. That call the last thing every night would be my habit for the next several days. It was near 1:00 am when I fell into bed. I had no trouble falling asleep that night. I was just too exhausted to think. The words of the Chaplin had completely slipped my mind.

[how could so many things go wrong?]

I know that many people are put off by my remarks about Johnny's death not being from the cancer. I have often mentioned some of the treatment or lack of treatment I blame for his death. I hope you will all bear with me. If you read what I am writing I hope you learn something that may be helpful to you. I warn that many of the things done to him are quite disturbing even to someone who never knew him. Yesterday November 20th was the second aniversary of the day Johnny asked to go to the hospital for help with the anxiety and the addiction to Vicodin. That was a fatal. As many of you know I have been writing about Johnny's treatment and death. I even posted my story about his last two days and his death. So many things that happened that last two weeksno only contributed to his death but made his last weeks a living hell. I'm not sure why I feel the need to share some of those things with all of you. Maybe it is because so many of you have suffered the same kind of loss I have or maybe it is because everyone has questions. I think most of all that as the aniversary of his death approaches I need desperately to share some of the painful memories that are hammering at me again.

Following is what happened the day after he entered the hospital. I hope you bear with me as I post these things. There will be others. If you read them fine. If you don't that is fine too. I know only too well how disturbing some of these things can be.

Thursday November 21,2002

I want to back track a little before I go on to the events that took place once Johnny was in the hospital.

The last week or more that he was home the anxiety attacks were less often. Most if not all of the attacks were associated with the time the Vicodin was due. He was convinced that if he didn't take it every four hours that he would have either an anxiety or panic attack. If he was late taking it and realized it an attack would start. His addiction to the Vicodin was much more mental than physical. He did still complain of feeling short of breath at times but seemed better able to handle it. He depended totally on the nebulizer and the Vicodin to control the attacks. I suspect that sense he had been on the Paxil for a month it was finally working. Had he not gotten addicted to the Vicodin his anxiety may have subsided completely.

The problem at night was different. He wasn't really having attacks. Mostly he was stalling trying to get the nerve to go to sleep. Unless you have been in that situation no one will ever understand what it was like. Normally Johnny was a very strong man even at that late time. It was just when he had an attack that his problems started. He was very afraid of dying, especially of death. I believe that is because of the way he had been taught the Bible. He had made mistakes in his life and knew it. Anyone else would have gotten over that but Johnny believed in Hell and feared it. Sleeping was a time of vulnerability. He knew that he could not protect himself if he was asleep.

I have learned too that it is a very common condition in people with lung cancer. It is due to anxiety and the shortness of breath that they feel. Most people with lung cancer or any kind of lung problem have the sensation of shortness of breath even when there is no clinical reason for it. I also read a story by one man who was on Taxol and had to stop because he would stop breathing at night. I wonder if that was happening to Johnny. With the anxiety that would really explain his fears!

The Tuesday night before Johnny went to the hospital the next day his oldest son came to visit for a while for the first time in weeks. While he was there the nurse came. Normally she would have come earlier in the day but for some reason she was running late that night. When she examined Johnny all of his vital signs were good. I also asked her if he was moving air all the way down in both lungs and she said yes. She also told me that he sounded good. That told me once again that even if the cancer was starting to grow again it was no where near as bad as it had been when he was originally diagnosed.

I was up early that Thursday morning. I had a lot of things to do before I could leave for the hospital. When I had stopped at the store the night before I had gotten change so I could do our laundry. I had not been able to go out for any and had forgotten the night I had gone to WallMart while his son was there. Our laundry hadn't been done in two weeks. We were desperately in need of clean clothes. I had my coffee and took our dog out for a walk then got all of the dirty clothes together to take to the laundry room. I had planned on vacuuming and dusting that day. I wanted to keep our home very clean. I knew how important that was to Johnny's health especially while on chemo. I was still hoping to talk him into coming home instead of going to a nursing home.

At 8:30 I called to talk to him. He was awake and sounded alert and told me that he had had a fairly good night. He assured me that he was doing better and told me to stay home until I got my housework caught up and then go to see him for a while. He also told me that he just wanted me to visit him then go home. He said he would make out fine without me spending the night. That conversation left me a little confused about my feelings. I felt that maybe him going to the hospital was not such a bad idea after all. He sounded better already. I also had the feeling that he was a little too sure of himself. I felt like he was telling me that to make me feel bad for the things I had said to him the day before. I felt like he was distancing himself from me and that bothered me. Still I was pleased to hear him sounding so much better and told him I would be there to see him later that afternoon.

I was on my way out the door with the laundry when the phone rang. It was the social worker from the hospital calling to talk to me. She told me that Johnny had asked her to call and talk to me. He had told her that he had checked himself into the hospital because he had psychological problems and needed help. He wanted her to tell me that he had admitted that to her. He had also told her that she needed to talk to me so I could tell her what had been going on and she could reassure me that he would get the help that he needed.

We stayed on the phone for over and hour. She asked a lot of questions and I answered them all honestly. I explained to her about the anxiety and panic attacks and when they had started. I also told her that I knew why they had started and told her about the nurses remark that had started the problem. I told her that Johnny was very afraid to die and that he was addicted to the Vicodin. I explained how badly the episode with the man from mental health had gone. She told me that she had heard that he was one of the best but knew that what he had done had been the wrong thing. She told me that she knew someone else who may be better for Johnny and she would make an appointment for him. She also told me that any counseling that he started while in the hospital could be continued if he went to a nursing home.

I was very pleased and relieved when I hung up the phone. After two full months of trying to get help for Johnny I thought that we finally had what he needed. I was pleased that not only had he admitted that he needed help but he wanted to make sure that I knew that he had. I finally felt like I could relax for a while.

I took my laundry to the laundry room and put it to wash then went back to our apartment and warmed myself another cup of coffee. I was just getting ready to start vacuuming when the phone rang.

I answered the phone and it was Johnny. I knew when I heard his voice that there was a problem. He was almost in a state of panic. He said "I need you to get here right away. I don't want to stay here alone anymore". I said "Johnny what on Earth is the matter? You were fine when we talked earlier." He answered " I had a bad attack and these people just don't know how to handle it like we do. I need you here with me." I told him that I would be there as soon as I could. I explained to him that I had our clothes in the washers and could not leave until they were finished. He told me that he understood but added "Just get here as soon as you can. I don't want to stay here alone with these people anymore. I need you." I assured him that I would be there with in the next hour or so then hung up.

By the time my laundry had finished an hour or more had passed. I had all of my things ready to go. I had walked the dog again and made sure that she had food and water and left for the hospital. I made one stop to get the flowers for him that I had seen the night before. I knew that he would like them.

I went straight to his room and found him still very upset. I again asked him what was wrong. He told me that he had had a very bad attack and that all of the nurses had been with him trying to help him get over it but they just didn't know how to do it like I did. He was still shaking and I asked what had caused the attack. What he told me upset me so much that I knew that I would not leave him there alone again for any length of time even had he agreed to it. He told me "The therapist came to give me a treatment. Instead of the pipe he had a mask. You know I can't take the whole thing at once and I don't like that mask. I took the mask away from my face and took it just a little at a time like I do at home. The therapist got upset with me and held the mask on my face until the treatment was done."

Johnny got so upset telling me about that experience that he had another major attack. I tried to talk him down but it wasn't working. The nurse came to his room and together we talked to him until we finally got the attack under control but he was still very upset. I was too. He was claustrophobic. Holding that mask on his face was not only illegal but cruel. I knew that I would not leave him alone again and was certain after seeing what he had caused that it would never happen again. I should have gone to the patient advocate and filled a complaint. The truth is I didn't even know they had such a thing and it never entered my mind to file a formal complaint.

After the attack was under control the nurse called the doctor's office and got permission to give him Xanax as a supplement to the Paxil. It was prescribed for him only as needed for breakthrough anxiety that the Paxil couldn't handle. He took it twice that day and I believe once each of the two following days. He never had a problem of any kind taking it. His condition steadily improved.

There was still one thing that concerned me and I kept waiting for them to do something about it. That was the addiction to the Vicodin. He asked for and received it every four hours. Instead of bringing him one or asking him if he wanted one or two they automatically gave him two. The five or six that he had been taking at home was increased to eight. Everyone knew that he was in no pain but they gave it to him when he asked. I kept waiting for them to start trying to cut back on it. That never happened. I had thought that they would give him a placebo because it was so obvious that his addiction was mental. I even asked about it but never received an answer.

We told the nurses that I would be staying with him and requested something for me to sleep on. A chair that made into a bed was brought for me. It was not as comfortable as the recliner I had at the rehab unit but it was a place to lay down and get my feet up. At least I wouldn't have to worry about the swelling in my legs returning.

He called his son and told him that he was in the hospital. I had to go outside to use my cell phone because the calls I had to make were all long distance calls. Cell phones are not allowed in the hospital. I called his niece and my niece and told them where we were. I knew they would be calling and wonder why they couldn't reach us at home.

I left him that evening long enough to go home and take Misty out for her walk. I stopped and bought myself a sandwich on the way home. I hurried back to be with Johnny. I thought him being afraid to be there alone would keep him out of the nursing home. I was wrong. He was still talking about it that day. To avoid an argument and keep from upsetting him I just avoided the issue for the rest of that day and the next.

At home he had been eating less. I know that part of the reason was because he just didn't want to have to go to the bathroom. The other reason was because of the Vicodin. It had caused him to be constipated. He was eating good already that second day in the hospital but getting uncomfortable from not having a bowel movement. I told the nurse and she got an order to give him Milk of Magnesia. He would have that several times the next few days. It took until Sunday morning for it to finally work. He had been over a week without having a bowel movement and he had not stopped eating.

Friday morning I left him just long enough to go home and walk Misty and make sure she had food and water. I had a quick lunch and supper in the hospital cafeteria. Other than taking time to make phone calls I was with him constantly. There was never another problem with the breathing treatments. I'm not even sure if it was the same therapist that came to his room after that first time. All in all he had a very good day that Friday. Other than my concerns about the Vicodin and the nursing home I was beginning to feel much better about his condition. He already looked better than he had in weeks.

He called his son's several times. I bought another calling card so he could call his family from his room. He talked to his niece and his sister. He also used it to call his two sons that lived 80 miles away. He waited but no one came to visit him. We spent the time alone together in his room.

[Checking in...]

Carleen I am so relieved to see you post. I don't log on as often as I used to but when I do I always look for news from you. I was very worried when none came. It is very obvious that you have more on your plate than is reasonable but having been where you are I know that with cancer reason plays no part. Please take care of your self the best that you can under the circumstances and know that my thoughts and prayers are with you and Kieth.

I hope when you were in New Orleans you got to see some of the good side of the city. Having lived less than seventy miles from there for 32 years I am well aquainted with both it's good and bad side. I know that you don't have much time for sight seeing while you are there but if you get a chance try to visit some of the old plantation homes. There is one not far from Baton Rouge called Knotaway. It is one of the most elegant. Also be aware that the cemetaries or cities of the dead may be interesting to see but they are also very dangerous places. If you visit one make sure you have several people with you. It is sad to say that there are those who take advantage there and pray on tourists.

I hope that you can get a chance to keep us updated now and again. If not we do understand tho we miss you. My best to both you and Kieth. Lillian

[A little miracle finished his job]

Six weeks ago my nieces daughter in law gave birth to a baby boy. He was born 4 months premature and weighed on one and a half pounds. All reason said that he should never have been born alive nor survived for more than a few minutes.

During the past 6 weeks he went through heart surgery, intestinal surgery and had a cut in his liver mended. He suffered an extreme yeast infection. As prayers went out for him all across this country that small miracle brought many people to their knees who had forgotten how to pray. He touched so many lives in such a short time proving what I have been saying. It doesn't matter if a person lives minutes hours or an hundred years. Each and everyone of us touch lives. I know that someone somewhere was in desperate need to be brought back to God and a small little miracle named Ace made that happen.

Every life no matter how short has a purpose, a reason for being. Yesterday morning little Ace was finsihed with his task here on this old Earth and he left this world to be once again with our maker. Many hearts are sad today because of his passing but many more are rejocing because he was here for what little time we were granted his presence.

Lillian

[Going through the motions of living]

Thank you Curtis and Leah for your responses. It is nice to know someone still cares. Sorry I waited so long to respond but my time has been severly limited.

Curtis I no longer have the option of taking time off. I did that for months but now it takes every penny I can earn just to live and pay my bills. What I can earn is my only income. Unfortunately a job that should be one of the best paid (taking care of people and doing things for them that they can not do themselves) is one of the lowest paid. Just one more indication of our screwed up priorities in this old world today. Still it is the only job that I feel that I am not only very good at but it is where my heart is. So I plug along working hard trying to survive while doing what little I can for those who need my help.

As far as over doing it. I have done that all of my life but now this old body won't let me do near as much as I used to do. What a difference just a couple of years make. I work hard but now I have to stop and rest for a while after a couple of hours. I can no longer work all day and into the night like I used to.

Tomorrow will be 2 years sense Johnny went into the hospital. He never returned home. He died on December 2, 2002. So many things happened those last weeks that each day has it's own special and painful memories. I have a very good memory so each detail is branded in my mind. I guess a good memory can be both a blessing and a curse. At least in my case it is.

I hope all of you find something special to be thankful for this Thanksgiving. I know everyone here is fighting a battle of one kind or another. For me I have to always be thankful that Johnny and I found eachother again even if our time together was so short. I can not even imagine a life that had never been shared with him at all. The greatest blessing we can have is the ability to love so deeply.

Take care all of you. I wish everyone here peace, hope and above all love. Love for those who have gone and love for those who you are furtunate enough to still have with you. Lillian

[My partner Jud passed away one week ago tonight.]

Tom I am sorry to read of your loss. Please accept my condolences. I can only say that you should always be thankful that you were privilidged to know such a good person. Lillian

[my wonderful Dad]

I have been away for a while and returning to find so many losses is truly heart breaking. My God bless you and grant you peace. Lillian