debdanielson
Forum Replies Created
-
Posts
-
Thank you for all the comments. The last few days of his life all ran together and I didn’t even know what date it was when he died- I made a guess and it was wrong. So, he actually died on Wednesday the 5th, in case anyone was wondering exactly where in the world I lived that my Wednesday could have been on the 4th.
I had finally convinced my mom that we were going to start morphine for my dad because he was in such pain and his breathing was horrendous. He couldn’t lay down on his left side or back because his right lung was not working, so he always laid on his right side to keep the left lung open. As a result all his fluid shifted to that side of his body and so it was terribly swollen and bruised. The cancer went into his spine and shoulder and hip and my mom was only giving him percosets, so I finally got him started on morphine and ativan. The pain started lessening after a full day on morphine, then by the second day on morphine he was starting to ease off of his right side for the first time in so long, then on the morning of the third day he was lying on his back. He had went through the pulling at the sheets, his hair, his oxygen, all that- he was very distressed so Hospice told me I needed to catch him up a little with the Ativan. So after a few more hourly doses of that he was finally comfortable and lying there peacefully for the first time in a couple of months. After a couple of hours of that his breathing started to get slower and slower, and I knew he wasn’t really there anymore. Our Hospice nurse came back and checked him and said he was in a coma now and that he most probably wouldn’t wake up again, which he didn’t. His breathing got slower and slower through the evening, and I sat by his bedside counting seconds between breaths. I prayed for him to stop breathing and then when he would stop I’d pray for him to start again. Finally my mom came back in the room and crawled in bed with him, and I put the blanket over them, put their poodle in the bed with them and turned out the lights and went to sit in the next room for a while in the dark. A while later my mom came out and said he was gone. I think he needed to be able to not be focusing on the pain and gasping for breath so much so that he could finally let go and find peace. So, while I know so many people hate the use of morphine, in my dad’s case it eased his last couple of days so that I didn’t have to watch him go through a really gruesome death like he would have without it. Anyway, thank you all so much for all the help and support.Hello everyone. Thanks again for all the support. My father died a little before midnight, Wednesday, August 4th, 2009.
I went to the user list specifically to look you up and see how your husband was doing. I had not been on here for a while and I was looking over some old posts of mine that you replied to, thinking your husband was doing just about as well as my dad.
I am so sorry to hear that he died.
I guess there really isn’t much more to say than that. I am just so sorry.
-Deb
Hi. I haven’t written anything for a while…
My dad is actually doing a lot better. The reason that there was fluid in his lung before, and the reason he is on oxygen now is that he has a large tumor in the pleura of his right lung. It developed rapidly, in about two week’s time. It is crazy how fast this stuff can grow. Anyway, while the tumor was growing so rapidly he was doing very poorly. He was so weak he could barely move on his own, he could not eat and all he could do is sleep. Now that the tumor has established itself and the growth has slowed down or stopped for now, he has rebounded. He is on Megace, an appetite stimulant, and he is now eating three meals a day plus snacks! Granted, he is not eating as much as his pre-cancer self, but before the Megace we were lucky if he took in 600 calories for the whole day. Some of his strength has come back and he is even walking to and from the bathroom twice a day with the help of his walker, and he can get in and out of bed to his wheelchair now with no help.
The bad news is he has a new oncologist he is working with and she is not familiar at all with cc. She just told him the other day that tumors in the pleura of the lungs are so rare that she believes he has mesothelioma too. I mean, can you imagine? So now my poor dad thinks he is the victim of two incurable cancers. I tell you, that day he just about gave up hope. I have talked to him a few times since then, and I think I have him convinced that the stuff in his lung is metastases from the cc, but I know this has really put a damper on his spirits.
He was all set to get a pic line put in and start chemo again, and now he canceled the pic line and is putting off the chemo. Yes, it is palliative chemo, but I know he is now thinking he has no chance at all after what that new doctor told him. She is located in the hills of Pennsylvania, and it is mining country up there, so she sees a lot of mesothelioma. So instead of researching cholangiocarcinoma and knowing that it metastasizes to soft tissue throughout the body, she jumped to a familiar conclusion for her. It just makes me mad.
I wrote to my dad’s first oncologist and told him what is happening and asked him to please call the new doctor and familiarize her with my dad’s situation and cholangiocarcinoma as well, so hopefully he will find the time and be able to do that. I think my dad needs to hear it from a doctor that he does not have meso. Even though the end result would be the same whether he had one or both, I think that it is psychologically damaging to hear news like that and that the doctor needs to tell him she was wrong.
Well I hope everyone else is doing as well as they can. Just wanted to check in and nose around and see how others are doing and give a little update on my dad. Best wishes and prayers to all.Thank you. This really is the only place I feel that I can say what I want without boring anybody, bringing anyone down or making them feel bad for me, etc. Even my husband, who knows all I have been dealing with, has his own life and work and he travels and is back and forth and so busy- even he seems to forget that it is constantly on my mind and how sad I am and he expects me to be able to keep right on being the perfect happy little wife. It is okay for me to cry a little or be sad for a little while but then I have to put it away and pretend it isn’t happening. And I don’t want to keep telling my friends all this stuff- as much as they love me I know it brings them down to hear this stuff and they get all sad and worried for me. They have happy things going on in their lives and I want them to be able to talk to me about those things, not feel bad that they have happy stuff while I don’t, so I just really don’t bring my dad up too much or if they ask give them the bare minimal details and when they say how sorry they are I just say ‘it’s okay, thanks’. But here is the one place I can talk about it. I can be in a bad mood and nobody gets upset. I can go on and on about my dad and nobody feels uncomfortable. I can ask questions and get the benefit of other people’s experiences, and I can offer what tiny little bit of knowledge I have learned through this whole thing.
I am feeling better after this morning’s feeling sorry for myself. My husband and I not only drove my dad straight up to Pennsylvania, then we had to drive back down to Wrightsville Bch, NC to return the conversion van we borrowed from my husband’s boss for the trip, then we had to rent a one way rental and then drive from there to Tampa, Florida which is on the west coast to pick up my husband’s children and then drive back down and across Florida to Fort Lauderdale which is all the way down south on the east coast. So we just finished driving basically three thousand miles in four days. Ugh. So I was very tired and depressed but I am much better now!
Anyway, thanks to everyone on here who helps every day. When I pray, I always pray for everyone on this site, whether it be patients or friends and family.I am sorry to hear the ‘new’ news about your husband. It sounds like you have a nice team of people working with him- amazing what a huge difference that makes. My dad is finally in a really nice hospital and everyone seems sweet and caring (as opposed to the last hospital he was in where you got a bad feeling just driving up to the place and hardly anybody smiled). You both are in my thoughts and prayers.
Rosy, I am glad at least one issue has been resolved for you. You no longer have to question yourself if you are doing the right thing in regards to telling your father the truth about his cancer.
I am so glad that you got a second doctor’s opinion. I hope your father’s infection clears up soon so that he may begin chemotherapy. Best of luck to him!Rosy, only you and your family can know what is best. My personal opinion would be to tell him he has cancer and that it is still in a stage in which it can be fought. How will you explain it as it progresses? Are you prepared to tell him you lied to him? And I’m sure if he started chemo he would realize the tumor was not benign.
Where are you located? Are you in an area that has a cancer center of some sort? Are you dealing with an oncologist yet or just your family doctor?Thanks Rortmanns. I am hoping that my dad will eat for once after getting drained! Don’t want to think about him having more pain, but I guess it is going to have to happen. I want him to at least be able to have pizza again a time or two. That is his favorite!
Daniellemarg- one more thing… what you said about your husband’s attitude and being humbled. I feel the exact same way. I was looking at my dad today in his wheelchair- he doesn’t even have the strength to hold up his head most times when he is in it- and when he catches me looking at him he smiles. Doesn’t give a rueful shake of his head or a sad face, but smiles. He can’t walk, he can’t eat, he has to worry about losing control of his bodily functions at times and he still has not complained ONCE.
I can only hope that I have inherited some of his dignity and grace.
Rosy- Marions is right! Print that and take it to your doctor!
And while the advanced form of this cancer is not curable yet, there are options available for patients to increase their survival time. Some people do quite well with chemo. My dad was doing great and it shrank his tumors, but then he developed some infections that kicked his butt and he won’t be able to take chemo again and he is nearing the end of his road. But, if he had never had the bad luck to get that first urinary tract infection that started him down the long road to other infections, I think the chemo would have added a lot of time to his life because his tumors shrank quite a bit in just 2 months of treatment. Plus there are other options besides chemo…
What stage is your father? I am guessing Stage Four because many doctors seem to write off Stage Four patients as goners before they really should.
Have you talked with your father yet and told him everything?
My dad knew he had cancer but not how bad, and I wish now that I had been open and up front with him from the very beginning. As shocking as it would have been for him, I think it is more shocking to him that he is as bad as he is in just the three months since he was diagnosed. He went from a fit hardy man with some vague stomach complaints to a frail wheelchair bound man who is on constant oxygen and who is fifty pounds lighter. But hindsight is 20/20 and everyone’s situation is different. You have to do what feels right and go with it. Good luck and best wishes for your dad.Daniellemarg,
I am sorry that you are going through this. My dad’s port had gotten infected too, because it was being used for drawing blood and giving meds other than his chemo. He ended up with a staph infection.
One thing- the infection could be in your husband’s heart. If his port was infected they should be doing (and VERY soon) a special type of echocardiogram to check for endocarditis. Because the port is in a central line, the bacteria could go straight into the artery and into his heart, so please ask your doctor when they are going to check that out. If he is positive for endocarditis he will have to take antibiotics for a while to clear the infection up. Luckily my dad did not have endocarditis. I think it is the ONE thing he has not gotten. Poor guy.Antibiotics are frequently prescribed for the long term. Some can build to toxic levels, such as vancomycin and they do regular blood tests to check and make sure the levels do not become toxic. Some others may have an effect on the liver after a long time so then they take blood and check liver values. Basically, in your boyfriend’s case I think they are going better safe than sorry. If it will make you feel better, just do research on the antibiotic they prescribe him for long term use and see what is says when you type the name of the drug and ‘ for long term use’ after that.
But it is done in many cases and if watched over correctly there will probably be no lasting ill effects. Be sure to get your boyfriend on probiotics though- that is VERY important with antibiotic usage.
