lilyjohn Posted November 25, 2004 Share Posted November 25, 2004 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. Quote Link to comment Share on other sites More sharing options...
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