Love,hope and heartache

[Guest]

My story starts 45 years ago. I was a teenager when Johnny and I met and fell in love. My age and circumstances seperated us and for over forty years we led seperate lives with no contact between us. A very real dream brought us back together when my marriage was ending in a very bad way. Johnny's medical problems had already started.

He lived in a small beach community in Washington state. A bad marriage left him 3 sons but little else. For ten years he lived alone until his ex wife died and his youngest son came to live with him. Living on Social Security he could only afford a very small used trailer. Before he got it it had had a leak and as time passed the smell of mold growing between the walls became very evident but he was not able to afford anything more and had no one to help him better himself. His older sons had their lives and Johnny was treated with the "out of sight, out of mind attitude".

When he developed a cough and shortness of breath he went to the clinic near where he lived at Copalis Beach. He was always given the same advice 'Quit smoking and you will be alright". In early February 2002 he finally told the doctor there "either help me or shoot me". It was at that time that he was sent for a heart scan to see if his heart could be causing his problems. No lung ex ray was taken. After the clear heart scan his health took a dramatic turn for the worse. He suspected it was the dye used for the scan. Still his doctor did nothing for him until he insisted again. At that time he was sent to a pulmonoligist who asked several questions and sent him back to the doctor at the beach. Still no lung ex ray.

By the beginning of May he was very sick and loosing weight. He had noticed for a long time that when he went to stay with his son for a few days his health improved. By then we were talking on a regular basis and both suspected that his trailer was making him sick. Still he had no more help with his problem until the beginning of May when he was sent for an ex ray. He was told that the ex ray showed some suspecious spots and he needed a CT scan. On May 16th he was told that the CT scan showed that he probably had lung cancer. No other appointments were scheduled at that time. The CT report stated that he had numerous nodules that were consistant with cancer that had matistised from somewhere else. They were also said to be consistant with several other things among them fungus.

His illness kept him at his son's house and he requested that he be given a doctor near by to check him out and help him. Each time he was told that he had to go back to the doctor at the beach. A doctor by then who had told him that he was a referal doctor and did not treat patients. When Johnny attempted to see the pulmonologist again he was told he had to go back to the doctor at the beach. Finally an appointment was made with an oncologist then canceled and another one made with a urinologist for a Prostrate exam. A bone scan was done as well. All tests were clean. Still he got worse and by the middle of June had still seen no doctor about his lung problem. He was given the run around constantly.

On Father's Day 2002 his son was taking him home. An argument started and by the time they got to Johnny's home he couldn't breathe. He was taken to the hospital in Aberdeen and a chest ex ray taken. He was given a nebulizer and told by the emergency room doctor "all that shows on your lungs is cancer. If you have anything you want to do I suggest that you do it now because I doubt you will be alive in a year." This was his opinion based on nothing but an ex ray! One hell of a way to spend Father's Day!

Circumstances had kept me from joining Johnny but when he called me on Father's Day and told me what had happened I started immediate plans to go to him. I arrived on July the 3rd and found him in a motel room not far from where he lived. He had quit smoking and after being closed up for nearly a month the smell of mold in his trailer over powered him and he moved to a motel to await my arrival. He was a very sick man.

He seemed to improve once I was with him and we left the beach to go to his son's house on Friday. I was determined that on Monday he would see an oncologist. Friday evening he took a very serious turn for the worse. I called 911 and we ended up in the hospital with him in critical condition. We had been together only 2 days. Waiting to be able to go to him was a nightmare. I wansn't even sure that he would live through the night.

Once on oxygen he improved immediately and we spent 4 more days at the hospital with me sleeping in a chair with my head on his bed. More ex rays were taken and a lower body scan that came back clean. A tumor marker test was taken and a biopsy of one lymph node from his neck was done. In less than an hour the surgeon gave me both a diagnosis and a prognosis. It was based on what he saw the lab report I learned later would take at least a full day. At that time no other tests were taken. His diagnosis was based on ex rays, the tumor marker test. the lymph node biopsy information from the surgeon and a CT scan of his lungs that by that time was 2 months old. We were told that he had NSCLC Stage IV but never told a spacific kind of NSC. We were also told that radiation was not an option because he had so much cancer that he would be burnt too bad. Later I learned that Western Washington Oncology did not have the means to give radiation at that time. I would also learn that there was a pulmonologist in the same building but his doctors would do nothing but treat him themselves in their own way.

After being told that the cancer was expected to shirnk with Chemo and that Attitude was 90% of the battle Johnny had new hope. He tolerated the Chemo of Taxol/Carboplatin very well. He lost about 2/3 of his hair and instead of losing weight he gained back all that he had lost plus ten pounds. He did not look like someone who belonged among the ones who were losing weight so fast that they were hardly recognizable. At the end of six treatments the CT scan showed that the nodules had shrunk 50% from the scan done in May. I can not help but wonder how much more it could have grown from May til July while he was being given the run around. Taking that into considration it could have shrunk much more that 50% but then again if at least part of what was in his lungs was as I suspect fungus it may have gotten better before he even began treatment for cancer.

When the second series was started he had a severe reaction (we were told) from the Carboplatin. One minute his skin was like ice. The next he had a temperature of 103. After a night in the hospital he was alright and sent home with more determination that ever that he would beat the cancer. Every one who saw him thought he was right. Everyone that is but his doctor and the nurses. Still he continued to improve.

From the time he entered the hospital in July until September 20th he was taking Theodour, a drug often given to asthma patients for long time care. On that day he was told by his doctor that he no longer needed it and it was stopped. On the same day the Chemo nurse who had given him such hope to begin with made a remark that proved to be the beginning of the end. He told Johnny that it didn't matter how well he was doing or how good he felt that he would never beat the cancer and would be on Chemo for the rest of his life. That along with stopping the Theodour started a series of first Panic and then Anxiety attacks. When his doctor refused to give him any medication for anxiety he tried to help himself using the Vicodin that had been given to him while in the hospital. He became addicted to it and I was always given the same answer for my concerns"He has lung cancer what difference does it make".

After two months of constantly battling the panic and anxiety (After over 2 weeks with nothing he was finally given a small dose of Paxil) he decided against my wishes to go to the hospital for help with the anxiety and addiction to the Vicodin. That was a fatal mistake! Instead of stopping the Vicodin it was increased to the maximum safe amount and then doubled the safe amount. All of that when he had no pain or complained of any pain. They were feeding his addiction and making it worse. On his request he was to be sent to a nursing home for one weeks rest for me as well as himself. By then the Paxil was working along with Xanax for episodes that needed more, like the time the respiratory theropist held the mask on his face and wouldn't let him take it off for a second.

For some reason Doctor Gorton decided to change his medication to Paxil and Ativan instead of Xanax. Everyone was aware that he had had a prvious bad reaction to the Ativan and we reminded his nurse. At that time Gorton changed his medication from Paxil to Remeron an antidepressant. No thought was given to withdrawal from the Paxil and the Remeron was started at double the normal starting dose for a healthy young person.

I found The Cancer Treatment and Wellness Center in Seattle and had it set up to take Johnny there. When he learned that he would see someone who had not written him off his condition improved over night. At that time his doctor ordered him given Morphine in a nebulizer, a treatment that I have sense learned is warned against because the side effects can be so severe. Johnny developed fluid sounds in his lungs in less than two hours after recieving it. He was also alergic to Codiene so chances are he was alergic to Morphine too. A delay by the nurse on duty the day after Thanksgiving at the nursing home (Liberty Country Place) caused so much upset that I took him out of the nursing home to take him to his doctor myself. The delay made him so upset that I had to take him to ER instead. That cost his life.

He was to be treated for pneumonia tho no reason was ever found for the fluid sounds. He was also give a dose of Aitvan in his IV behind our backs after he had refused it telling them how badly it had done him before. It messed him up worse than ever and then a so called doctor Leyton Jump came to his room only to harrass him and try to force him to sign a DNR. When Johnny refused he refused him treatment and arrangements were made behind our backs to send him to another hospital. I was then told that was the only way he would get treatment for Phneumonia. I was told that I had to leave so they could get him in the ambulance that was on the way. An ambulance that didn't arrive for him for over 3 hours after I was told to leave. At that time he was given Morphine. I know that after the Ativan he would not have taken it willingly. It was forced on him and that is why I was told to leave. I only learned about them giving it to him much later.

Once at Capital Medical Center in Olympia his oxygen level fell seriously low. His doctor then put a DNR on him but Johnny's son called and made them remove it. He survived the night and continued to improve until late Saturday when they again gave him Morphine. At that time he told them that he would not take it again. He them developed Myoclonus. On Sunday morning December 1st a pulmonologist finally came to his room. My hopes that real help was finally with us were dashed when I realized that he had only came to again try to get Johnny to sign a DNR. When Johnny refused he was told two things that I know were deliberate lies to try to scare him into signing a DNR. He was told that if he was put on a ventilator he would never get off because once on one a person could never breathe on their own again. He was also told that he would have t live with the Myoclonus(violent jerks of his arms) the rest of his life because it was part of his disease. Still Johnny insisted that he was at the hospital to live not die. He refused to sign the DNR.

When his son came that day he was taken aside and told that Johnny was dying and the only humane thing to do was give him morphine. Neither Johnny nor I were consulted. His son had no idea that Johnny had refused it or the problems it had caused. It was then given to him along with the Vicodin. All of that dispite him having no pain. After a day of some things that I won't put here(the torment they put us both through) he went to sleep. When I left his room and returned he was in what I know now was a drug induced coma. I was told not to disturb him because he was resting from the day before. His vital signs were not taken because they did not want to disturb him. That went on for 4 hours and for some reason I couldn't go to him and try to wake him. I should have been screaming at them but I just couldn't. At 4am they bathed him and changed him and his bed dispite the fact that he was unresponsive and like a rag doll without ever taking his vital signs. Finally the nurse came and saw that he was barely breathing. All of his other vital signs were normal but his oxygen read O. He was taken from me to ICU because he was full code but once there his desires were ignored. He was not put on a ventilator that could have saved him instead he was just bagged and left to die. I know that it was deliberate. I was let in thinking that I would find him awake instead I watched him struggle to live and then die.

His death has left me heartbroken and angry. I know that he recieved the worst treatment anyone could from every professional that we trusted. Because of that I have dedicated my life to reseach into lung cancer and medications that can harm as well as help. I want to tell Johnny's story as a warning to all of those who are as trusting as we were. Never trust a doctor 100% it can be fatal. Even the best make mistakes and most have egos that get in the way and that can and does kill. I was a novice and knew nothing about cancer any more than Johnny did. I only wish I had found this site when we needed help so desperately. Knowledge can save a life. Seek that knowledge. You can never know too much. Demand your rights and if they are denied scream and get attention. Any thing is better than nothing. If only I could go back and know what I do now!

I filled complaints but they were all dismissed with no action. In some cases they never even mentioned Johnny's name. My response to the state medical board in Washington was simple, truthfull and to the point. It is all a matter of public record now so I can tell our story. I told them that they are not there to protect the public but to cover the asses of the doctors. It will take a lot for them to prove any differently to me. In the mean time I will do all that I can to help others have what was denied myself and Johnny. Life and a chance to share a love that was so great but stollen from us twice in our lives. Lillian

[lilyjohn]

Sorry I forgot to log in. At home I have it set. Thanks for reading my story. Lillian