REVTAMA Posted March 18, 2018 Share Posted March 18, 2018 Hello All, My name is Kaya. I am here because I rec'd the shock of my life the other day, that my father in law is in stage 4 of a metastatic cancer most likely an adenocarcinoma, which has caused his lung to collapse and made it necessary for him to be placed on a ventilator. He was not healthy previous, but we just were NOT expecting cancer, at all. He developed a nagging cough. When he told me about the cough, he said he thought it was a cold, but this cough never went away. And although he never did have any symptoms of a 'cold' we all believed that it probably was just some kind of cold/allergies/cough, and left it at that. That cough eventually led him to being unable to take a breath one morning this past week, and he ended up in the ER with what we all thought was 'pneumonia'. He sounded terrible that morning. The ER docs told us that had to intubate him because his lung was collapsing. And right after they did the procedure, his heart began to have terrible arrhythmias and he went into cardiac arrest in the ER. During the time in the ER they were able to do a few imaging studies, Xrays, CT's and they told us they thought they saw a mass on the outside periphery of the Upper Lobe of the Rt. Lung. But they were so occupied with the Heart issues we quickly put that out of our minds, and along with the docs, concentrated on every word they said about what they would do next to try to save his life. Eventually he made it to the CCU and there eventually his heart was stabilized with a pace maker. He was however unable to be taken off the Vent. The docs said that they tried to reach the mass for biopsy and could not reach it. They believe that the mass is causing the lung to fill up with mucous (adenocarcinoma) and that it's size may be contributing to the collapse of the lung. Each time they tried to remove the Vent tube, my father in law would have problems breathing and have a serious arrhythmia and so they are pretty well telling us now he will have to be weaned in a nursing home situation (if possible). They said they can do no more for him at the Hosp. At one point I asked why they couldn't try radiation to shrink the tumor, just to shrink it so that we could try to remove the respirator, so he could die without being on this horrendous machine, but they said while they do palliative radiation, because he is so sick, they will not do it for him. Also they told me since he is on the vent, they would not be able to administer the radiation via CT scan which is how they do it, so essentially I feel like we are being told just take him to the nursing home to die. He is struggling on this machine. I feel so horrible for him. The other thing I feel is so much guilt. Because I am a Healthcare professional, I have been so involved in his care. HOW did I miss this? I am so angry that I did not follow up on that cough. I mean on the one hand he had been very ill with neurological stuff that I had to help him with and heart issues which were very complex, and he has been in a wheel chair for over 10 years so his healthcare is difficult, but still, I feel in a sense, like I have failed our family and him Thank you for listening. I just needed to get this out. I also want to know if anyone has any experience with getting palliative care even in a situation like this, where the for instance the palliative radiation may be dangerous for the patient? I just feel like what do we have to loose? If he is willing to try it... Link to comment Share on other sites More sharing options...
BridgetO Posted March 18, 2018 Share Posted March 18, 2018 I'm so sorry to hear about your father-in-law's cancer and heart issues. What a terrible situation for all of you! Please don't feel guilty or angry at yourself for not having identified the cancer. Lung cancr is so insidious, showing no symptoms in early stages or in later stages masquerading as something innocuous, like a cold or allergy. That's why people are oftne not aren't diagnosed until the cancer was advanced . I 'm fortunate in that my lung node was seen early in a CT scan for something else. Many, if not most of us with lung cancer aren't so lucky, and it'is usually just a matter of luck. I've not known anyone personally who's had experience like this where palliative radiation may be dangerous. Your father-in-law might want to get a second opinion on this. My best wishes to your family. Be kind to each other and especially to yourself. Bridget O Link to comment Share on other sites More sharing options...
REVTAMA Posted March 18, 2018 Author Share Posted March 18, 2018 Thank you Bridget-I am calling Hospice, and will explain to them that we have yet to meet with any Palliative Physicians or Radiation Oncologists at the Hospital. I think the Oncologist I was speaking to was saying that none of the oncologists would treat him palliatively with radiation because radiation is very tough on the body and they know he is in such a weakened state already. Irregardless of that, I am going to ask Hospice what we can do to-if there is any modality, any protocol we can try- ANYTHING that we can try to get him off the respirator-if not, at least we asked, and found out for sure. It is truly feeling like we have run out of all options, but at least if we try and even if he cannot be weaned from it, I would like to know what they can do to get rid of his anxiety and of course any pain that develops. Another complicating factor, our father has been in a wheel chair over 10 years, with paraplegia. So just his history has these doctors giving up on him, but he is 76 and he did not get to be 76 without a will to live. He has grandkids and his great grands that he loves so much-he is the sweetest old guy, worked so hard his whole life, gave everything to his kids, and now we are gonna do all we can! Thank you so much for your help! Here he was last year when things were pretty good: Link to comment Share on other sites More sharing options...
Tom Galli Posted March 18, 2018 Share Posted March 18, 2018 Kaya, Oh my, you are indeed between sadness and inaction. From the information I gleaned, a ventilator is necessary to sustain yet it blocks treatment, even palliative care. I’m not sure one can even be discharged from a hospital while intubated. I can well understand your desire to allow death with dignity but consider also the suffering and fright one would experience trying to breathe with lungs filled with liquid or mucus. I would however consult with a palliative care physician on the question of easing his fright and struggle with respiration. Hopefully the palliative care doc could ease his anxiety and pain perhaps by increasing the amount of his anesthesia. I know this also blocks your ability to interact with him but perhaps there is a level where interaction can happen without anxiety. I don’t see any choices here that improve the quality or duration of your father-in-law’s life. I wish I did. I do however think you are wrong to feel guilty for his medical condition. From the information you conveyed, his health rapidly deteriorated on admission to the ER. I doubt your intervention a week or a month or several months prior would have had an impact. His medical condition was years in the making. I’ve known many where an ER visit and treatment for one condition unmasks a number of other serious conditions. I wish I had meaningful suggestions for you. As it is, I have only my deep sorrow for your family accompanied by my prayers. May His peace be upon your family. May you feel His comfort as His will is done. Stay the course. Tom Link to comment Share on other sites More sharing options...
Steff Posted March 18, 2018 Share Posted March 18, 2018 Kaya, From one caregiver to another, please stop blaming yourself. I understand tho. I blamed myself for a long time with both of my mom's lung cancer diagnoses because I should have listened to her more when she said she didn't feel right. Since doctors were saying she was okay, I just kept telling her that what she was feeling is probably just part of COPD, age, or weight. Perhaps if I pushed and took her to another physician, maybe her cancer recurrence would have been found a few months earlier, I don't know. What I do know is now that I have set those feelings aside (they are still there, but I don't let it affect my daily living), I am allowed to fully focus on her treatment. About a month into my mom's treatment, she was hospitalized with several issues. These times were hectic, as I am sure they are for you. It seemed as tho I was getting several different stories and none of them matched, let alone matched my thoughts. And my reality was that I didn't know if I was going to be able to take my mom home. It took 2 weeks, but she did get to come home. She went from being I intubated with a highly contagious infection, pneumonia, and over 2 liters of fluid on her lung to getting to go home to a long road to recovery, but she did recover. We survived the chaos and her surgeon telling me that things looked very grim for her, that if he had to do surgery, she probably wouldn't survive. Please don't think that I believe my mom's challenges compare to your father-in-law's. I just wanted to share my experience with you to let you know that you are not alone. And honestly, we never know if when our loved one will "perk up" and open the possibility for additional treatment options. I hope that hospice can provide some quiet in the midst of all of the chaos for you. And please be sure to take care of yourself, if not for you, for your father-in-law - it's hard to make solid decisions being sleep and food deprived. Please know that we are all here for you. Take care, Steff Link to comment Share on other sites More sharing options...
BridgetO Posted March 18, 2018 Share Posted March 18, 2018 Thank you for posting the wonderful photo of your dad. Bridget O Link to comment Share on other sites More sharing options...
LexieCat Posted March 18, 2018 Share Posted March 18, 2018 Hi, Kaya, I'm so sorry about your dad-in-law's situation. I lost my own dad just over a week ago--not to cancer, but basically to a gastrointestinal bug that was going around their Assisted Living facility. He aspirated in his sleep, and they were able to get him breathing but then it happened again after he was admitted to the hospital. Fortunately (from our perspective), they found the DNR we had JUST put on file when I was out there a month previously. His health had been declining for some time--he was finding it harder to walk, falling a lot, losing what was left of his hearing and eyesight. He was becoming depressed, though he never complained and always tried to act like everything was OK. My mom died of metastatic breast cancer 30 years ago, but she spent the last four months of her life on a ventilator, and he was ADAMANT he did not want to go through that. They did not intubate him (per the order) and he died about four hours after he got to the hospital. These are difficult decisions, but for us, I'm convinced that prolonging his suffering would not have been good for anyone. Sure, I would have liked to say goodbye (I live on the opposite coast), but I'd seen him a month ago and talked to him every week. I honestly think he was ready. I'll keep you and your family in my thoughts, and hope you are able to arrive at a decision you can all be at peace with. Sending a hug, Teri Link to comment Share on other sites More sharing options...
BridgetO Posted March 19, 2018 Share Posted March 19, 2018 LexieCat, I'm so sorry to hear about the death of your father. It was good his wishes were respected. My thoughts are with you. Bridget O Link to comment Share on other sites More sharing options...
PaulaC Posted March 19, 2018 Share Posted March 19, 2018 14 hours ago, LexieCat said: Hi, Kaya, I'm so sorry about your dad-in-law's situation. I lost my own dad just over a week ago--not to cancer, but basically to a gastrointestinal bug that was going around their Assisted Living facility. He aspirated in his sleep, and they were able to get him breathing but then it happened again after he was admitted to the hospital. Fortunately (from our perspective), they found the DNR we had JUST put on file when I was out there a month previously. His health had been declining for some time--he was finding it harder to walk, falling a lot, losing what was left of his hearing and eyesight. He was becoming depressed, though he never complained and always tried to act like everything was OK. My mom died of metastatic breast cancer 30 years ago, but she spent the last four months of her life on a ventilator, and he was ADAMANT he did not want to go through that. They did not intubate him (per the order) and he died about four hours after he got to the hospital. These are difficult decisions, but for us, I'm convinced that prolonging his suffering would not have been good for anyone. Sure, I would have liked to say goodbye (I live on the opposite coast), but I'd seen him a month ago and talked to him every week. I honestly think he was ready. I'll keep you and your family in my thoughts, and hope you are able to arrive at a decision you can all be at peace with. Sending a hug, Teri Teri, I’m sorry to here about your father. I feel no matter the circumstance it’s never easy. Paula Link to comment Share on other sites More sharing options...
Tom Galli Posted March 19, 2018 Share Posted March 19, 2018 Teri, Please accept my condolences on the passing of your dad. Stay the course. Tom Link to comment Share on other sites More sharing options...
LaurenH Posted March 20, 2018 Share Posted March 20, 2018 Hi, Kaya, I'm very sorry that you and your family are going through a difficult time. I'm glad to see that you've already connected with several of our members and moderators. This is a great place to ask questions and share your experience with others navigating a similar situation. Please let me know if you'd like me to provide you with more information about LUNGevity's support programs and resources. We are here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
Lisa66 Posted March 20, 2018 Share Posted March 20, 2018 Hi Kaya, I am so sorry to hear about your father-in-law. I do not pretend to have any experience in your situation, but I do have a father that is in the middle of radiation and he is having such a hard time. I believe palliative care radiation would not be as strong, but they may feel like it would cause more harm than good.I also watched my grandmother fight for air in her last days. That was not easy for her or those that loved her. These are my own experiences and I do not tell you this to get you to make a choice you do not want to make. I share them hoping to give you a few more experiences to help you as you and your family make those decisions. I will keep you and yours in my thoughts and prayers. Lisa Link to comment Share on other sites More sharing options...
Lisa66 Posted March 20, 2018 Share Posted March 20, 2018 LexieCat I am so sorry to hear about your dad Lisa Link to comment Share on other sites More sharing options...
Recommended Posts
Archived
This topic is now archived and is closed to further replies.