Pamela Posted May 7, 2004 Share Posted May 7, 2004 I recently found this message board and have been reading the postings. All of you seem so kind, caring and knowledgeable about this horrible disease that I would like to get to know you and become a part of your group, if you'll let me. My Dad (77) was diagnosed January 6, 2004 with Stage IV NSCLC with brain and spine mets. One tumor on his cerebellum was 3cm. After radiation, we were told that it had grown. When we got a 2nd opinion, we found it had actually shrunk to 2.5cm. However, he was taking very high doses of Decadron for about 3 months and developed a severe case of steroid myopathy. He got to the point where he couldn't walk, use his arms or even shift his position in bed -- none of which was tumor-related (confirmed by 2 different hospitals now). The worst part was the effect of all the medications. In addition to Decadron, he was given Zoloft, Ativan, Haldol, Ambien, and about 8 other medications. When he developed a lung infection on top of that, the combination of factors threw him into delirium with myoclonus (continuous muscle spasms). All 4 of his children live quite a distance away, and our stepmother is intellectually-challenged. By the time my brother got there, Dad was totally out of his mind, severely dehydrated and had to be hospitalized. Because of his age and the cancer, doctors told us we should let him go. We quickly did research and convinced the doctors that the delirium could be reversed, and they reluctantly agreed to try. Then Dad went into respiratory failure and had to be put on a ventilator. After a week, the lung infection cleared but the doctors told us that due to the steroid myopathy, they didn't think he would be able to breathe on his own, and they wanted us to remove the ventilator and let him die. We couldn't do it. Good thing. Once the meds were all removed, Dad regained his lucidity and was able to breathe fine on his own. Dad's lung, spine and brain tumors have all been confirmed to be stable for the moment. He is in a rehab facility and has regained the use of his arms, can move his legs, and is progressing quite well. If he gets strong enough, chemotherapy might be an option, but we aren't counting on it right now. It has been an emotional roller coaster, and I wish we had known about this group when we started. I have learned so much through trial and error, and reading about your experiences has been very enlightening. Thanks for allowing me this opportunity. I hope to get to know you as we struggle together. Pam Quote Link to comment Share on other sites More sharing options...
Ry Posted May 7, 2004 Share Posted May 7, 2004 Welcome Pam. Your poor dad has had had a hard time. I hope things begin to look up for him soon. Hang in there. We're happy to have you in the group. Rochelle Quote Link to comment Share on other sites More sharing options...
TeeTaa Posted May 7, 2004 Share Posted May 7, 2004 Welcome to this club that noone wants to be in. Indeed, you will find a wealth of information and support on this site . . . it has been a lifeline for our family since January. Let us know how we can help. Blessings, TeeTaa Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted May 7, 2004 Share Posted May 7, 2004 Pamela, What an unbelievable story. Your Dad has been through it! What a survivor. We welome you into our group with open arms and hope you stick around. There are some good people here. Cheryl Quote Link to comment Share on other sites More sharing options...
jamie Posted May 7, 2004 Share Posted May 7, 2004 Pamela, Boy is your Dad a fighter! Sounds like HE knows what he wants, and he sure makes statistics, and doctors look foolish. You, your family, and most of all your Dad should continue to follow your hearts, and intuition. Seems like that is what got him this far... Best of luck Jamie Quote Link to comment Share on other sites More sharing options...
Donna G Posted May 7, 2004 Share Posted May 7, 2004 Hi Pam. Boy all I can say is wow. What a horrific 4 months you have had. Sounds like he is doing better now. Is he still on the vent? Please keep us posted. Donna G Quote Link to comment Share on other sites More sharing options...
Alisa Posted May 7, 2004 Share Posted May 7, 2004 I am so sorry for all your Dad (and your family) has been through. As all have said so far, what a fighter! But I think someone definitely has to be your Dad's advocate and find another doctor/hospital! They just seemed to quick to give up on him. All the best, Alisa Quote Link to comment Share on other sites More sharing options...
Don Wood Posted May 7, 2004 Share Posted May 7, 2004 Pam, what a nightmare! Glad you all hung in there and didn't buckle under. Glad you joined us here. Let us know how we may help you through this. Don Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted May 7, 2004 Share Posted May 7, 2004 Oh, my, what a lot he and you have been through. I am so glad you made the choices that brought him back to you. It is so hard to know what to do sometimes. Do keep in touch and I sure hope things will get better for all of you. Margaret in Iowa Quote Link to comment Share on other sites More sharing options...
sharyn Posted May 7, 2004 Share Posted May 7, 2004 Pam - welcome - I can't believe what the doctors have put your father through... unbelievable. I am so proud of you that you stuck to your guns and went with your gut feelings on the whole thing. I always find that is best and question everything the doctor does!!! Sorry about your Dad, but glad you found us here. This site has been a life saver for me and I know it will help you tremendously. Love, Sharon Quote Link to comment Share on other sites More sharing options...
TAnn Posted May 8, 2004 Share Posted May 8, 2004 Pam, I am so sorry that your dad has been through so much. He is lucky to have a family like yours to stand by him and fight for him. Welcome to the boards and I know you will find a wealth of support and information here. I sure did! TAnn Quote Link to comment Share on other sites More sharing options...
Melinda Posted May 8, 2004 Share Posted May 8, 2004 Pam-- I am so sorry to read about the horrors you and you family have been through recently--but very glad you found this site. It has been an oasis for me, personally. I just want to give you and your family compliments for not letting people give up on your dad because of his "age". That always steams me. Some of us may only be meant to live on this earth for a couple of years--others last more than a century (with a GREAT quality of life). My great-aunt fell and broke her hip (and had complications) in her seventies--and some of her doctors moouthed the platitude that "she had already led a full life". Well, yes, she had led a full life--but she had a lot more to live. She is currently 101 and going strong. She just wishes there were more people [particularly men ] closer to her own age! None of us know how long we are meant to "live"--including doctors! Take heart. Please feel free to log on here to express your feeelings, do research, and post queries. You'll be surprised at how this group will manage to bring a smile to your face at the most unlikely of times. I've only been "on" the board since March--but I want to host a big ol' dinner party to meet every single member and give them a hug for all they have done to help me through the last couple of months. Maybe I'll win Lotto and do just that (the rest of the money would go to LC research!). Welcome. Visit (or lurk) often! Melinda Quote Link to comment Share on other sites More sharing options...
Pamela Posted May 8, 2004 Author Share Posted May 8, 2004 Thanks to all of you for your warm welcome and thoughts. After reading your postings, I agree with Melinda -- I'd like to meet all of you face-to-face. Onward in the fight! Pam Quote Link to comment Share on other sites More sharing options...
lilyjohn Posted May 8, 2004 Share Posted May 8, 2004 Pam welcome to our little or I should say big family. I joined this message board last summer to try to make people realize the dangers of the medications that you speak of. I have been taking an emotional break from the board for the past two weeks to get past yet one more bout of depression. I have to tell you that when I read your post last night it was like going back in time. Unfortunately my Johnny was treated with that same deadly attitude. It took his life in December 2002. His cancer was confined to both lungs. He had Taxol/Carboplatin and no real problems other than the usual fatigue a few days latter. He actually gained back all of the weight he had lost plus ten pounds. Our problems started because of that attitude that you speak of. One thing I will tell you is that I was told by a member of the medical board of the state of Washington that once a person has lung cancer all precautions on medications are ignored. In other words a person with lung cancer is considered terminal so they are given any medication indiscrimanately hoping that something will help but if it kills them instead so what they are expected to die anyway. Johnny's problem started when one drug he had been taking (Theodour to make it easier to breathe) was stopped suddenly. That same day a chemo nurse started his IV in a room the size of a closet (he was claustrphobic) and told him that it didn't matter how well he was doing he would never beat the cancer and would be on chemo for the rest of his life. That started a cycle of panic and anxiety attacks that his oncologist chose to ignore and refused to treat. Despite his emotional problems his cancer continued to shrink. When we went to another oncologist in the same office to get Paxil for him the one he was seeing got mad. From that day on he did and said things that I know were intended to make Johnny's emotional condition worse. He succeeded. The medications envolved are what caused his problems that led to his death not the cancer. He was started and stopped on numerous medications that should not have been given simotaniously and should never be stopped suddenly. As a consequence he put himself into the hospital for help with the anxiety and an addiction to the Vicodin that his doctor was glad to let him use to try to help himself when he recieved nothing for the anxiety for over a month. Instead of helping him off of it he was at first given the maximum safe amount per day and then that amount was nearly doubled. All of this at a time when he had no pain what so ever. The last weekend of his life he developed fluid sounds in his lungs after being given Morphine in a nebulizer. That proceedure was very new and it is suggested that even modern hospitals do not have the proper equipment to administer it that way. I have learned that one of the adverse reactions to Morphine is that it causes sucretions to form in the lungs. That last week end he was badgered by 3 different doctors trying to force then scare him into signing a DNR. He refused and as a cosequence was refused treatment and shipped to another hospital. I was forced to leave and after I left he was given Morphine to make it easy for them to get him into the ambulance because he was fighting not to go. The reason he was so messed up was that he had been given an injection of 4 milligrams of Ativan a drug that he had had a previous bad reaction to. It is a drug that is very well know to cause both confusion and hulicinations. When he developed Myoclonus he was told that it was because his blood gases were so bad and that he would have to live with it for the rest of his life. A tactic that was used to try to scare him into signing the DNR. Still he refused and remained full code. I was his full time caregiver and we were to be married but I had no legal rights and really little time to learn about cancer or medications because his kids did absolutely nothing to help us. That last day of his life his son finally decides to do right by his dad. The only problem is that he knew nothing about his condition or what had gone on the past several days. When the nurse told him that his dad was dying and the only humane thing to do was give him Morphine he agreed. Johnny was awake and they could have asked him but knew that he had already refused the morphine so they chose not to ask him. He was again given all of the other medications that had been stopped along with the Morphine. When I found him in a coma with his sitter reading in a chair next to his bed I was told that he was sleeping naturally and not to disturb him. They left him like that for hours and did not even take his vital signs one time. I didn't know any better at the time. When they finally did do something for him all the did was bag him not put him on the resperator as he had requested if need be. I know that they deliberately left him to die so they would not have to honor his wishes. I also believe that the medications were given to him so he would die. They were just tired of dealing with the problems of the anxiety that they had let get out of hand. I know this is a long story but believe me I haven't even touched on all of it. Those medications can be just as deadly as the cancer and I believe that is one reason that doctors give time lines. They know that if the cancer doesn't kill a person something they give well might. I am so glad that you were able to see what was happening and stop it. My regret will always be that I didn't see. I just had too much to handle alone. I would like to know more about your dad's condition and when they decided to put him on a resperator. Did he have a blood gas test and what were the numbers? Is the Myoclonus gone now? Is he on oxygen and what medications was he on at the time he went into respiratory failure? It is too late for this information to help my Johnny but will add to my knowledge and somehow that gives me a little peace. I pray that your dad continues to improve and you never have to know the heartache that I do. God bless you for being there for him. Had Johnny's sons been there for him like that my nightmare may never have started. Just one more question. You don't live in Washington do you? If so is his oncologists Western Washington Oncology? I sure hope not but they sure do sound like the ones that Johnny had. Quote Link to comment Share on other sites More sharing options...
Pamela Posted May 8, 2004 Author Share Posted May 8, 2004 Lily, I cried as I read your message because I understand. My Dad is in Texas and, thank God, the myoclonus is gone. It's very scary how similar your story is. Dad had also been taking Vicodin; in fact, that was the first med we stopped because he had many of the symptoms of opioid neurotoxicity, which can be a cause of myoclonus. When Dad went into respiratory failure and had to be put on a ventilator, he had just been given Ativan. I don't know about the blood gases because I wasn't there at the time. At this point, he occasionally uses oxygen, but only after exertion. Your story makes me wonder how many others have experienced this and thought it was the cancer. That is such a scary thought, isn't it? You are so right about the meds. That is a message I really would like to spread to everyone being treated for cancer. We didn't know it until it was almost too late for Dad. My brothers and I researched for hours and hours to try to help Dad when he went into delirium (although we didn't know it was delirium when we started). I cannot tell you the horror and fear I felt when I realized what had been done to him. The medications would certainly have killed him if we hadn't gotten there in time. (And we had a nurse visiting him every day who was convinced he was dying and told us we were being cruel not to give Dad more morphine to make it easier and quicker for him to die. We fired her.) It may upset some people, and I certainly hope not, but the hospital where Dad had the most difficulties was M. D. Anderson. The oncologists there have been wonderful. We had trouble when my Dad was transferred to Symptom Control and Palliative Care -- which is not staffed by oncologists -- so they could help him with the steroid myopathy, insomnia (likely caused by Decadron) and residual side effects from radiation. Like with your Johnny, over a 2-week period they had started and stopped so many drugs that we couldn't keep up with it. They sent him home with 12 drugs -- and an untreated lung infection. (When Dad complained that it hurt to breathe, they gave him Vicodin and told him that he had lung cancer so get used to it.) Like you, we have also been stunned at some of the comments made to our Dad. Many times we have had to do damage control after a nurse or doctor stressed, yet again, that he is dying and should just get used to the idea. We are not in denial -- we know how bad Stage IV NSCLC is. We know that it will likely take Dad from us, but it matters WHEN. If he can be around for an extra 6 months, 8 months, a year, 2 years, 3 years -- who knows? -- that's worth a whole lot. Every day matters. And some people actually beat it altogether. It would be a miracle, but he just might be one of those. We have made a commitment to Dad: As long as he wants to fight, we'll fight with everything we've got. When he decides it's time to quit, then we'll be with him through that with the same depth of commitment. My heart aches for your pain. Please don't blame yourself. There is great strength in being part of a team through something like this. (That's the beauty of this group!) If I had been by myself, I most likely would have trusted that the doctors knew what they were doing. Never again. Please keep telling your story. You may save someone's life. How long has Johnny been gone? Are you doing okay? Bless you! Pam Quote Link to comment Share on other sites More sharing options...
Pamela Posted May 8, 2004 Author Share Posted May 8, 2004 Lily, I cried as I read your message because I understand. My Dad is in Texas and, thank God, the myoclonus is gone. It's very scary how similar your story is. Dad had also been taking Vicodin; in fact, that was the first med we stopped because he had many of the symptoms of opioid neurotoxicity, which can be a cause of myoclonus. When Dad went into respiratory failure and had to be put on a ventilator, he had just been given Ativan. I don't know about the blood gases because I wasn't there at the time. At this point, he occasionally uses oxygen, but only after exertion. Your story makes me wonder how many others have experienced this and thought it was the cancer. That is such a scary thought, isn't it? You are so right about the meds. That is a message I really would like to spread to everyone being treated for cancer. We didn't know it until it was almost too late for Dad. My brothers and I researched for hours and hours to try to help Dad when he went into delirium (although we didn't know it was delirium when we started). I cannot tell you the horror and fear I felt when I realized what had been done to him. The medications would certainly have killed him if we hadn't gotten there in time. (And we had a nurse visiting him every day who was convinced he was dying and told us we were being cruel not to give Dad more morphine to make it easier and quicker for him to die. We fired her.) It may upset some people, and I certainly hope not, but the hospital where Dad had the most difficulties was M. D. Anderson. The oncologists there have been wonderful. We had trouble when my Dad was transferred to Symptom Control and Palliative Care -- which is not staffed by oncologists -- so they could help him with the steroid myopathy, insomnia (likely caused by Decadron) and residual side effects from radiation. Like with your Johnny, over a 2-week period they had started and stopped so many drugs that we couldn't keep up with it. They sent him home with 12 drugs -- and an untreated lung infection. (When Dad complained that it hurt to breathe, they gave him Vicodin and told him that he had lung cancer so get used to it.) Like you, we have also been stunned at some of the comments made to our Dad. Many times we have had to do damage control after a nurse or doctor stressed, yet again, that he is dying and should just get used to the idea. We are not in denial -- we know how bad Stage IV NSCLC is. We know that it will likely take Dad from us, but it matters WHEN. If he can be around for an extra 6 months, 8 months, a year, 2 years, 3 years -- who knows? -- that's worth a whole lot. Every day matters. And some people actually beat it altogether. It would be a miracle, but he just might be one of those. We have made a commitment to Dad: As long as he wants to fight, we'll fight with everything we've got. When he decides it's time to quit, then we'll be with him through that with the same depth of commitment. My heart aches for your pain. Please don't blame yourself. There is great strength in being part of a team through something like this. (That's the beauty of this group!) If I had been by myself, I most likely would have trusted that the doctors knew what they were doing. Never again. Please keep telling your story. You may save someone's life. How long has Johnny been gone? Are you doing okay? Bless you! Pam Quote Link to comment Share on other sites More sharing options...
tess Posted May 9, 2004 Share Posted May 9, 2004 Sounds like you need to keep an eye on what the Dr subscribes, they are over-medicating him for sure. Read up on everything he's taking because we are (and our families.) the only ones who are our own advocates Good luck and praying for your family. Quote Link to comment Share on other sites More sharing options...
TAnn Posted May 9, 2004 Share Posted May 9, 2004 Pam, I am so glad that I read your latest post. I also am being treated at MD Anderson. My oncologist is wonderful. When he, or the pulmonoligist could not help me with my pain from the catheter, I had an appointment with the palliative care department. I cancelled the appointment since we decided to take the catheter out. I will definately be on the "watch" if I am referred there again. I do not like the idea that in the world of cancer it is common to just "cover up" the pain instead of find out what is causing it first. It may not be due to a tumor, it may be from infection, inflammation, etc.... I hate taking these narcotic pain relievers, so when my dr. prescribed oxycontin, I tried it for 2 days and hated the way it made me feel. I went back to over the counter pain relief. If I have to take it every 4 hours, so what, at least I won't become addicted to it! Thanks again for your invaluable information! TAnn Quote Link to comment Share on other sites More sharing options...
lilyjohn Posted May 10, 2004 Share Posted May 10, 2004 Thank you Pamela for replying to me. I will continue to tell Johnny's story to anyone anywhere. I hope that you will do the same. I realize that what we are saying is not something someone facing cancer wants to hear. Believe me I know that they and their caregivers and loved ones have enough fear to face already. It is not my intention to frighten anyone but to inform. At the time of Johnny's problems I would probably have just read over a message like yours or mine because I really didn't want to hear those things. Point is that I would have remembered anyway. Had anyone been as persistant as I am I have little doubt that I could have saved Johnny's life. I know too that he would not have had to live through the torment of his last days. There is a very sad truth in this country today. That truth is that sense coporations have taken over medicine and pharmisuitacles have grown to be probably the largest industry in the world the human factor has mostly been removed from the practice of medicine. That is why things like what happened to your dad and my Johnny continue. They will never be stopped until people open their eyes to them and start demanding change. In forty nine of our fifty states assisted suicide is illegal. A person can be in terrible physical or mental pain and request help to die and if someone helps that person goes to prison for murder. Still doctors and others in the medical profession are allowed to take lives under the guise of morals or ethics or even being humane. They can take the life of a person who wants to fight for their life and get away with what amounts to the same as murder. I believe they should be held just as accountable for their actions as the rest of us. What makes what they do even worse is that they are the ones that we have to trust our lives to. Their victims are very vulnerable and unable to help themselves. That makes that kind of treatment even worse. The fact that they do it claiming that they are being humane is probably the worst thing of all. Believe me had anyone experienced what I did with Johnny his last day they would never call his treatment humane. Because I was there and asking questions they chose to poison him slowly instead of all at once. That caused a torment that gives me nightmares every day of my life because I witnessed what he went through. I know there are a lot of people who depend on those medications. I know too that there are times that some of them are needed. My problem is when those medications are given for a reason other than what they are meant for or when a person is left on them past the time that they are needed. Often that happens because their doctors know how addictive they are and don't want to have to deal with the withdrawal stopping them will cause. Morphine has been a drug of choice for years for cancer and other severe pain. I have read everything I can find about morphine and I know from my research that if pain is present a person can take continuous increases in the dosage. I also know that if no pain is present it can and does kill. The warnings about giving it in the absence of pain are very explicit. My goal is to inform and make people aware. I also want to do as much as humanly possible to change that deadly attitude. I think that doctors should be required to treat cancer patients with the same kindness and intent that they do others. I think that all precautions on medications should be observed just as they would be with anyone else. Most of all a patient's rights should never be abused. When they are the person who abuses them should be faced with a major fine and possible suspension of their license. I know that sounds harsh but we are talking about not only peoples lives but there right to be treated with respect and not tortured. Like Johnny I believe that a person should fight until the very last breath. Problem is it is easy to say that when you are not facing the posibility of death or suffering with in days or even hours. It would be much harder to make that decision then. Nonetheless it is a very personal decision that only the individual has the right to make. Once that decision is made every effort humanly possible should be made to carry out their wishes. It is their life, their body and their choice. Until the time comes that these changes are made or I join my Johnny I will keep fighting for these things. I will not be shut up nor will I back down. It is high time that someone stand up for the people who can't speak for themselves. You see Johnny was given a booklet stating his patient's rights. When I filed complaints they never even considered what was done to him. They were interested in knowing that he recieved his booklet about his rights and that he was offered the chance for a DNR and an advanced directive. They had little care as to wether his rights were given to him or what his personal wishes were. As I told the medical board in Washington when I replied to their denial, they are not there to protect the public but to cover the asses of the doctors who either screw up or try to play God. To answer your question Johnny died December 2,2002 at 4:55 am. I was with him for his last breath and three hours after he died. I am doing alright at the moment. I'm sure that those who are going through what I am will tell you too that could change in an instant. It takes very little to knock you back to day one so you have to start all over again. Losing someone who is so much a part of you is something that you never get over. Losing someone under the circumstances that I lost my Johnny makes it ten times harder. Bless you and your family. Stay with your dad as much as you can. There are enough of you that someone should be able to be with him at all times. Believe me I only left Johnny for a few minutes at a time to eat and try to rest but that was all it took to take him from me. Quote Link to comment Share on other sites More sharing options...
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