Part 2 --Lies, preminition and dispair

[lilyjohn]

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.