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bfdboston

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  1. My best friend was actively dying for about a month. He was sleeping a lot from March 2007 and it progressively got worse until the time of his death. Not only did he sleep constantly, but he did not eat, then could not swallow. Eventually, a month prior to his death, he started to show signs of dementure. However, his death was imminent when I noticed his body temperature went from normal to extremely high (over 104F). He passed within 72 hours of that point. He was virtually in a coma. Could not speak, eat or do anything. Only had very bloodshot eyes and a permanent gaze. When he was medicated, his breathing sounded terrible. I'm not sure if it was too much medication that eventually took him or if his heart just let out from all the added exertion. I can tell you this: while I miss him terribly, I try not to think of those things, but it's natural. My memories are many and precious. He was taken too young from this world, but I know he's with God now and has been given the wings of an angel. Hang in there. Only God knows when the time has come.
  2. Well, sorry I've been away from the boards for a few weeks. Unfortunately, after my friend passed, I developed severe abdominal pain. I had an endoscopy on 09/05/07 which they took 4 biopsies from my stomach and then proceeded to do several CT MRI with contrast. They found a ten inch mass in my abdomen and had to perform emergency surgery which they removed my appendix; 18 inches of my small intestine; part of my colon and then put all back together. They sent all the stuff out for pathology results, which I've yet heard the outcome. I was just released from hospital this afternoon. The pain is excruciating. I am on pain killers; anti anxiety medications and a strict diet. Not to mention I have 35 staples in my stomach. So will keep all updated, but that's the reason I've been gone for two weeks now. And, that's why it's important as a caregiver you take care of yourself as well. Please keep me in your prayers. I am out of work until November 28, 2007. I hope this is just nothing. Will keep you all updated. I will try to come to the board as much as possible, but it's been a bit tough in hospital and now I'm home and exhausted. Take care, Jim
  3. How is it going? I went back to work last Monday after being out for three months to take care of my friend. Yes, life does go on. And, unfortunately, I've gone back to a high stressed job myself. And this month is particularly busy with deadlines (some for Sept 07, Sept 25). So I will be working my butt off. This weekend I went to visit the grave and I just sat there and I cried and cried and cried. I'm ok today, but I have those moments. Last week at work, in the midst of a "crisis" (aka, lack of planning on your part, does not constitute a crisis on my part) deals. I had a moment when I just lost it and became emotional and started crying and had to leave my office for about two hours. It's not easy, but I'll get through it. It's easier when people are a little more understanding, but, then again, life goes on as you said. Please keep strong. Let me know how you're doing.
  4. I'm a survivor. A survivor of being a caregiver and am willing to talk to anyone who needs someone to talk to to help them through this. Please email me or private message me. Thank you. Jim
  5. Bring someone with you to ask the questions (here's listing of what I had asked about my friend's diagnsosis). Take notes!! Type the notes when you get home. They came in handy quite often when we could not remember exactly what was said. Don't forget, it's a lot of information being thrown at you at once, and a lot to digest mentally. 01. What type of nonsmall cell lung cancer do I have? 02. What was the TNM used in determining my Stage IIIB or Stage IV lung cancer? 03. Was the fluid from the pleura cancerous? If so, what type? 04. What specifically did the MRI indicate? 05. What specifically did the PET scan indicate? 06. What do my blood tests indicate about my cancer? For instance, the increases in phosphorus? 07. How many of these surgeries have you done in the last year? 08. How many patients have you seen with (insert your other complicating illness such as diabetes, etc) and lung cancer? 09. What does this surgery involve? 10. What are the risks of this surgery? 11. Are you performing a mediastinoscopy? Thoracotomy? Exploratory? 12. Why do you recommend this surgery? 13. How long will I be in hospital? 14. Given my (other illness) and cancer, is my body able to handle the stress and recover quickly enough after to start radiation? 15. Why do you not recommend non-surgical method, such as a bone scan, for possible metastases to the bone(s), additional MRI and/or PET scan? 16. The PET scan indicated there were many 1 cm or less inguinal lymph nodes (and many other areas as the report indicates), how come you do not recommend a MRI, PET scan for comparison? 17. Given I’ve been diagnosed as Stage IIIB or IV lung, and recommended treatment guidelines for those stages do not include surgery,, why are you recommending this surgery? 18. What can be done in order to minimize my symptoms of pain? Are there additional medications or could my current medication be increased in strength? 19. Are there any medications which you recommend for anxiety related issues which seem to increase my pain at times?
  6. I would highly recommend if you suspect, or are undergoing a workup for lung cancer, that you request, each time, a copy of all of your medical records (labs, clinic notes, interpretations) and then you have someone you trust research the information so you can ask questions and be well informed about your situation. I can tell you from first hand experience, when my friend Ron went to the doctors for follow up, they would sugar coat the situation. It was not until I demanded him to get the reports and I researched what was in them that they probably mentioned 10% of the report. And, it's also important for you to demand all the reports be explained to you in full in language you understand. For instance, as an example, the PET scan, per the doctor, came back "showing some 'hot spots' here and there". Well, when we read the four page interpretation, there was a lot more to it that that. And, also, do your research prior to visits. I would research and have questions (which I already knew the answers to prepared) for our visits. When I asked the questions, if I heard back an answer which I didn't find in my research, I would keep drilling and drilling. We saw nearly 15 doctors over the past nine or ten months and, sadly, I can tell you that only 2, yes, that's right, 2 of them knew what they were talking about; went over information with the patient and respected the other individual who was there with him: myself. If a doctor doesn't give the person who is with the patient the respect, the courtesy to ask questions and make you feel welcome, then, you should find another doctor. If a patient brings someone with them, it's because that patient wants that person there and that person is an important part of his/her life. The doctor owes the person respect as well as the patient and the questions should all be answered. I will post a list of questions which I asked. You may find them helpful.
  7. You have support knowing there are many people out there who have gone through, or are going through what you're going through right now. When I needed encouragement I would look to my faith and spirituality and that got me through it. Also, helping the person who had the disease and the rewards I received from helping someone I truly loved made my days easier, but they were never easy. But you will get through it. There are friends here to help you.
  8. Dear Patty, You are in my thoughts and prayers. As a caregiver of a Stage IV lung cancer patient, I can tell you one thing: never give up hope, and ALWAYS keep a positive attitude, no matter what. And, find peace with your spirituality, whatever it may be. You will need it to make it through the days ahead. God bless, Jim
  9. Dear Joy, My sincere condolences for your loss. I'm finding as the past few weeks have evolved, I feel a huge void in my being. I miss Ron terribly. We always did everything together; we were best friends for the last nine years. I can't imagine my life without a best friend. Each loss seems different: a partner, a grandparent, parent, sibling, neighbor, coworker. But losing a best friend, so far is the hardest loss I've endured, besides my paternal grandmother who tragically fell and broke her neck last November 5th on my niece's 5th birthday party, which, ironically, happens to be Ron's birthday, only the loss of a couple of friends and two other grandparents. (All of these losses I mind you have been nonstop since 2001). I totally understand what it's like to love and to lose, but I keep my faith in God and knowing Ron and the rest are watching over me, waiting for me and guiding me during the rest of my days. God bless. Jim
  10. I was a caregiver for the past nine months for my best friend who had Stage IV nonsmall cell lung cancer. He suffered terrible from a pleural effusion as well which 3 liters of fluid needed to be drained (regularly) because it took them so long to actually give him the pleuradesia. I can tell all of you who are going through this right now, you will have some very tough times ahead, but some very special moments as well. You will be the brunt of anger (misdirected often by many), the strength, the hope, the light, and the fight. You will feel exhausted emotionally and physically and just when you think you can't do anything more, you realize you will and you can. Unfortunately, Ron lost his battle on August 19th. And, now I am trying to readjust myself to life without a best friend. When you are a caregiver for someone you care about, it becomes your life (with breaks, of course for sanity, but you keep on going). Then, for me, it all just was over, Ron's life ended and my life has gone on without him. But no matter what the outcome is for you and your loved one, you will make it through this. Honor the patient's wishes, ask for help when needed, and take care of yourself. YOu will find yourself going through stages, emotions and sometimes feel overwhelmed and helpless. But know that your loved one appreciates everything you're doing. And don't forget your love one is dying, but it does not give them the right to treat you without respect. Terminal illness can trigger some very extreme emotions from both the caregiver and patient, but you need to always remember, if things are said which hurt you, you have the right to tell that person just because they are dying does not give them the right to treat you with their anger. They will. It's natural, but it's also important for you to let them know you are still a person and you deserve respect. And there will be moments when you will be frustrated and anxious and scared and you will be comforted by the patient telling you it will be alright. The most important thing is to remember: your gift is the most special gift one can give. And you will learn a lot about yourself during that time, and the person you're caring for. You will share some very special moments as well. Moments that may not have been shared had the illness not happened. YOu will see. Your faith, your spirituality, your attitude, your endurance, your will, your sanity will be challenged during this time, but you will come out a better person. Knowing more about yourself, what you can and can't do, your compassion and ability to show love to someone, help someone accept their situation and face their death with dignity, calmity and most importantly, peace. Anytime you need to talk, let me know. I am here for you and I'm glad I am part of this community. I'm only 33 years old, but I feel like I've changed so much during the time I cared for my friend. I wouldn't change it for the world. While others ran away, and turned their back, I stood by him the entire way from initial coughs, to work ups, to diagnosis, to comfort care, to death. And, that's something which I can't forget and neither will he. And the reward I received was knowing I helped someone I cared about deeply and would've given my life for or paid any amount of money to have back, but God works in mysterious ways and my reward will be found out at a later time, only a time when God knows. Thank you.
  11. Thanks so much for the support and kind words. I will definitely keep you posted. This is more of a right to die issue and control over one's self than it was about Ron's death to lung cancer. This could be me, you, your mother, father, son, daughter, friend, companion. I cannot stress enough for everyone to get a "5 Wishes" form and fill it out and have it sent to those who need it: proxies, family, doctors, keep it somewhere it will be found when needed. You may download a copy of the form from here: http://rapidshare.com/files/52164770/5wishes.doc.html
  12. Thank you for all the support and kind words. Yes, I know I did all I could for Ron. I did my crying while he was alive, but accepted the fact he would die from this disease. What I did not prepare myself for, nor am I able to fully understand, and accept I may never understand, is how a family could be so cruel to their own flesh and blood. I immediately completed a 5 Wishes form and had it signed off by witnesses, sent copies to my own family, doctor, boss at work, friends and put copies in my home where it may easily be found. This hospital violated a legal health proxy. The doctors told the mother I was the proxy and the lawyers told the doctor I was not. The doctors, nurses and other health professionals at that hospital were on my side and Ron's, but they wouldn't let him go because fear of a lawsuit. By the way, I did file a complaint with JCHAO and the Office of Civil Rights and have heard back from both. They're pursuing my allegations, which is backed up with many documents. My only hope is, if it comes down to any lawsuit or settlement, I am taking every single penny of the money and devoting it to a scholarship fund for Ron's nephew. I will not keep a dime of it. But, this hospital must pay for their terrible deeds. They made my friend suffer, and, I suffered watching him suffer. And, I can sleep at night knowing I am a good friend. His family, however, will have to answer to someone (and the hospital lawyers and administrators) much bigger than me. While I accept Ron's death; I can't accept the way he died. It bothers me terribly. It was not supposed to be that way, that's why he named me the proxy. The family turned on him, the exact reason why he did not want them as the proxy to begin with. Anyway, thank you for listening as I'm just saddened by what happened. Words can't describe the pain I feel. Best regards, Jim
  13. Ronald Palazzolo, age 47 November 5, 1959 - August 19, 2007 Ron was my best friend. I was his primary caregiver for the past four months and was with him every single step of the way from when the cough started in December to finally the diagnosis on May 25, 2007. He passed away on Sunday, August 19, 2007 at 1:15 in the morning. Ron was only 47 years old. He leaves his mother and four sisters, several nieces and nephews and many friends. He suffered during his last days and his family became the most horrible people one could ever imagine. Because I was his legal health proxy and in hospice care at my home, when it became too much towards the end, I suggested we go to his house where there were others who could assist with the caregiving. That lasted all of one week and they then wanted to have his medication "adjusted" and then bring him back home (he was showing signs of dementia). Needless to say, they were just selfish and didn't want to deal. They lied to Ron and got him, upon entry to the hospital, to sign another health care proxy form which he did, and which the attending and nurses said he was heavily sedated and not able to sign the form naming his mother and sister as the proxy. I was not allowed to see him even until I showed my proxy and the lawyers from the hospital then agreed I could see him. All he wanted was not to die in the hospital and be at my house with his family to access him. I did it for months without help, I could have done another few weeks, but I could not take him out of the hospital and the family would not either. He begged me every time I saw him to take him, but I had to tell him I couldn't because of the proxy issue. Ultimately, he became agitated and restless and the new proxy (the mother and sister) requested his medication DECREASE, so, in turn he became very agitated and then assaulted a nurse and a family member. Now he was going no place. He did not eat or drink for 15 days while in the hospital. It broke my heart the family would not take him home. There were four sisters, a mother, nieces and nephews and myself who could've done what the nurse did at the hospital (a non hospice facility as well), which was give him medication on time. The family had issue with that. Ron finally died on August 19th. He did not die peacefully and it was because of his family. He asked me on his deathbed days prior "does my family love me?" I had to answer, being the true friend I am and always was and will be, "I don't know". I couldn't have the heart to say no, but I don't think the answer was yes. Even he wrote down a list of seven (7) things he wanted upon his death. His family made sure none of those wishes were met and they had the paper written in his own handwriting. From simple things as to what he wanted to wear; to who was to read the eulogy (he wanted me, but I was not asked by family), to wanting pallbearers (all of who were strangers which was an insult to him); to where his final resting place was to be. They had him buried where he did not want to be, and there was no reason why he couldn't have been buried at the cemetery of his choosing (it was in the same town and they were doing burials). Since this began I have given my total support to Ron being his advocate, protector, coordinator, spiritual counselor, business manager, housekeeper, nurse: a caregiver. I can put my head down at night knowing Ron knew that and he thanked me and told me he loved me over and over and could not thank me enough. I was the one who took the misdirected anger from his dysfunctional family and the only one who suffered was Ron. They have to live with themselves with that. I do not. However, I am deeply bothered by how they made Ron's final days full of hell and how they lied to him and deceived him and tricked him just to leave him in the hospital. It's not right. Thursday, after the funeral services, one of the sisters (the worst of the bunch besides the mother) called me and was crying and crying and wishing. Wishing? I told her, just what I thought, she will have to live with herself knowing she made her brother's life hell in the end and not abiding by his wishes. Even to the point of not letting me, his best friend, see him. And would not be in the room when I was there. I slept on the chairs in the middle of the night even in the hospital so he wouldn't be alone. She did nothing but get his car and the mother did nothing but continue collecting the money from his business. My friend Ron was a good man. He suffered terribly with pain. He was used by his family and he knew it. But he knew I cared and loved him and helped him all I could. I just pray he found peace finally and is with God. And his family should be ashamed of themselves and that hospital for honoring a proxy which was not valid and creating suffering to someone who was dying of stage IV lung cancer. God bless you Ron, I will always love you and please watch over me as you promised and wait for me until the time comes when it's my turn. This was a rewarding experience to help my best friend. We both know and God knows. Love , Jim
  14. Does anyone know what is the recommended CD4 count one should have prior to being treated with chemotherapy for Stage IV lung cancer? My friend who is stage IV, is supposed to start chemo on Thursday, but his CD4 count, as of last check, was only 152. Help? Anyone? Many thanks!
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