Forum Replies Created
October 16, 2007 at 6:31 pm in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16658
Well the results are in on the scans at the Oncologists office, however they are trying to make us wait until Friday when is has a scheduled appointment to go over them. The nurse said to my Mom that she is not going to read 4 pages of findings to her over the phone. They also will not release the records to his Primary Physician, because he is not the Doctor that ordered the tests.
That being said, Mom is very angered that we again have to wait. I suppose she was pushing the nurses buttons a little and did get some info.
NO Lung Cancer, as we were told was the primary.
The Billiary Ducts are dilated.(whatever that signals)
The Liver and Lymph nodes are very involved(which we knew)
and the Cancer has metastisized to the bone ( where ?we dont know yet)
Mom is calling the Primary now to see if he can get the results, so he can talk to us.
Hopefully will let you kow soon.
LisaOctober 16, 2007 at 3:53 pm in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16657
Glad to hear from you. I hope you had a wonderful weekend away. You were correct in guessing that the anniversary plans didn’t pan out. He slept all day. I did give them gifts and made one of Mom’s favorite meals for her, but that was the extent of it. I so wanted it to be special for them, because in my heart, I am certain it will have been thier last.
I do not think of you as selfish at all. I understand that it is very theraputic to talk about your Mom and your last months and moments with her. The fact is, you were there for her through it all, and as I stated before, by helping me, you are letting her go on in your heart. I listen to all you say, and understand how much you truly miss her in your life. I am sure I will go through the same things as you, and will find comfort in talking about my feelings out loud. Your Mom would be so proud of you, helping others deal with thier personal pain and experiences. It keeps her alive, not only in your heart, but now in the hearts of others.
I am doing all I can for my Dad, what little I can, but I still feel helpless. I want so much to take his pain and sickness away from him. I want to see him up and about again doing all the things he enjoys. Realistically, I know I will never have the opportunity again to watch him work his magic on building things or just puttering around the garage and barn. It is an effort for him to just get out of his bed for a little while everyday, but I am there when he does.
I will post later tonight, hopefully after we hear something.
You may feel selfish, but I know you care about us,
LisaOctober 16, 2007 at 3:37 pm in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16656
I agree with everything you have said. I know my Dad deals with his grief in his own way, and I accept that. It is my older brother who has a difficult time accepting it.
My Dad also deals with grief through physical work and thats what he did back then.
I cry at times, but also hold back, and I never ever let him see it. I just joke back at him no matter what. Thats how he deals with it, thats how I handle those situations.
I hope you are feeling well, and are having better days. My thoughts are with you, and I am pulling for you.
Hugs LisaOctober 16, 2007 at 2:41 pm in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16654
I am so sorry that my posts made you cry. It must be so difficult for you to read my Dad’s story so soon after you lost your Father. The pain and emptiness you are feeling must be overwhelming.
We do not try and force Dad to eat anymore, as he only gets aggrevated. When he wants something, he asks, and gets whatever he wants. The sleeping is probably one of the most difficult things to adjust too, because its time you cannot spend with them.
However, I know that while he is sleeping, he does not feel nauseated and he feels no pain, so I guess I am glad for that.
I have been thinking about what everyone says, not to leave anything unsaid and tell him how much I Love Him, etc. With my Dad that is very difficult to do, as he hides all emotion. In all my life, and I turn 45 this month, I have never once seen him cry. Some of my sibblings hold that against him, because he never cried when my biological mother passed and then again when we lost my little sister at the age of 26 to a rare cancer as well. He never really spoke of them again. I look at it as that he just he way of dealing with things, he internalizes everything. I know he was very saddened at both those losses. When my sister passed, it was like the wind was taken out of his sail. She never got the chance to do anything she dreamed of doing in life. She married 2 months before she died, but never got the chance to be a Mother herself. She was very angered at the fact that she was dying, but put up a fight like no other.
I know when the time comes, in some way he will know how I truly feel about him. I find myself kissing him more often or just touching him, and I think he knows what I am trying to say to him.
I will post again hopefully today when we get the results.
Thanks For Caring,
Love LisaOctober 16, 2007 at 12:41 am in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16651
Not much has changed since I last posted. The weekend was not good as he was sick vomiting and slept most of the time. His pain managed to break through this morning, because he slept past the time the patch should have been changed out. He continues to eat the littlest amount of food and not drinking much either. How do you get a person to eat or drink anything when they sleep the majority of the day. Thats one thing that is most frustrating. He is not even getting any of his other medications, because he is not awake for those either. I do not know what to do.
We are anxiously awaiting the results of the sans, we we are supposed to get tomorrow. His weight loss has got to be over 50lbs as of this week, and much muscle loss also. His face is the only part of his body that has not changed drastically and for that I am glad. I know that too will change appearance, but thus far remains just a little thinner looking, not as drastic as the rest of his body.
He did have a visit from my younger brother on Saturday, and he fought to say awake.
He did such a good job of acting like there was nothing wrong, no one would ever guess that he is so sick. He was jovial and upbeat the whole time, and was awake much longer than usual. He did take a 45 minute nap while we ate dinner, but was awake for almost 3 hours. Needless to say, he slept the whole next day except for about a 1/2 hour at which time he got up drank a cup of tea and then vomited it right back up. He keeps asking where all the vomit is coming from, since he is not eating. It is so exhausting for him when he gets sick, it takes every bit of energy out of him.
I am trying to stay positive for him, but I am afraid of what the results are going to be tomorrow. I still think he is hopeful, in that they will say they can do something for him.
Will we then be faced with telling him there is nothing, no hope, no anything and watch the depression set in on top of everything else. I am very restless today, preparing for a possible sad day tomorrow. The waiting has to be the hardest part right now. So many questions, so few answers.
I will post tomorrow again tomorrow as soon as we get word.
Hugs LisaOctober 13, 2007 at 4:07 am in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16650
Hi Joyce and Missing U,
We all must have been posting at the same time.
I just read your posts from tonight, after posting my update.
In response to both your posts, I can only say what wonderful caring people you truly must be.The fact that the both of you have taken the time out of your busy days to think about Dad, Mom and myself, only convinces me more how special you must be.
I agree we do not know each other very well, yet I have begun to feel as though I am getting too. I cannot possibly put my thoughts into words as well as the both of you manage too, but I do feel your pain. I know how difficult it must be to support me and my family, when you have to keep re-living the suffering and heartbreak of your own experiences. All I can say is that your Dad and Mom obviously live in your hearts and minds and have given you the strength to go on and help others deal with the most difficult part of life. I can only hope that I can help others in the same caring way that you are helping me. I have gotten more support and love from the both of you, than I have gotten from people I have known all my life, and for that I thank you.
I listen to every word you say, and am trying to live each day as best I can under the circumstances.I too check the board everyday, as it is comforting to know that you are both here for me. Once again, stay as special as you are, for you a helping me more than you know.
Luv LisaOctober 13, 2007 at 3:19 am in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16648
Sorry I am just getting the chance to write and give everyone an update on Dad. Things have been such a rollercoaster ride the last few days. As of yesterday morning the confusion and hallucinating seem to have subsided, so I truely believe that he was over medicated with the fentanyl and oxycodone. He does not have access to his medications anymore, they are all hidden. He was still pretty sick yesterday morning, but as the day went on, he seemed to improve slightly. He is once again not complaining of any pain, but is still nauseous. It also seems that the vomiting is worse in the morning, and of course his meds come right up along with the bile. I suggested maybe trying the compazine in suppository form, thinking it may get into his system to do the job. He is trying to eat, very little of course, and is drinking fluids better. Although I know he is dehydrated, he is keeping more fluids down for the time being, so I am not going to fight with him about the hospital. I did tent his skin on his hand to show him how dehydrated he is and compared it to mine, but he just laughed and rubbed his skin till it went back into place. He is so stubborn, yet I am the same, one of his bad traits that he passed onto me. I am really a bullhead, and everyone reminds me of that daily.
The testing went well and the results of the MRI show NO mets to his brain, which is just what I had expected to hear. The results of the CatScan of his chest, abdomen and pelvis and the PetScan will not be given to us until Tuesday, ah yes, we wait once again.Of course when Dad was made to drink the concoction for the CatScan, is was only minutes until he vomited all that back up, but they did not make him drink anymore. Dad said to me as we were waiting that by the time they get the results and figure out what they need too, we should just call the funeral director and save a step, because he is going to die before they decide how to treat him. Sometimes I have to agree with him as it is all so frustrating. We just want answers, so that we can make decisions, and keep him comfortable. I know my Dad never thought he would have to suffer through an illness like this, he always thought he would have a major heart attack and go quickly. He would never have to worry about being taken care of, or losing his independence and dignity. I think that is the most diffcult part for him and of course for me, I always thought he was indestructable.
When we got the results of the MRI today, he once again seemed a little relieved, so I think his spirits picked up a little. In fact he was joking a little more like Dad, so far as to put on a dark jacket and dark hat and tell Mom he was all dressed for Halloween. Mom said “What are you talking about Jim?” and he answered chuckling, “I am going out as the Walking Dead”. I know it must sound morbid to all of you, but that is my Dad’s sense of humor as morbid as it may be. That is how he deals with this. However, he was then caught talking to the dog, and telling her that he wasn’t long for this world, and she would have to live with the Warden (Mom). I have had thier yellow lab Abbey on a diet for months because she is obese, and Mom remains strict with her. Dad on the other hand still feeds her whatever he is eating, and lately thats alot, since he is eating so little. AHHHHHHHH but I can’t yell at him, not now. He loves that dog. Dad is like me with the animals, in that he loves them more than some people, as thier love is true and unconditional. They love you no matter what and never ask for anything more than to be close and by your side.
Dad asked me today if I was taking a ride with him tomorrow to the Flea Market. I said are you up to that, and he told me, oh yeah, its going to be a nice day tomorrow.
So Mom and me will go with him even though he usually gets pretty sick while we are there, but he still wants to go and I think it comforts him. I actually thought that I could take my camera, and snap some photos of him without him taking notice to what I am doing. My parents anniversary is on Sunday, and I am going to get some photos of them together as well. I cannot take them out or do anything special for them, as he would rather just be home, but I will try to make it special as best I can.
So, I am back to trying to be and think positve once again, and take in all I can while he is having a few good days. My brother is stopping up tomorrow night to see him, and I think he is looking forward to that as well. So I am hoping for a good weekend with him, I do LOVE him so much.
Thanks for all your input and advice, caring and support,
LisaOctober 11, 2007 at 1:40 am in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16642
I cannot call an ambulance because he will just act normal at that time and tell them NO. I realize also that it could be alot of different things that could be causing this and I am so frustrated. Mom was waiting to set hospice up unitl after this weeks testing was complete.
I was just up stairs sitting for an hour, they are both in bed and didn’t hear me come up. I am so restless, and cannot sleep. I am a little exhuasted myself, mostly from all the worrying.
He does know about his appointment tomorrow and I am sure he will go, he has been very good about that. I also think there is a possibility that he overdosed on the fentanyl patch. He changed his own patch in the middle of the night almost a day ahead of schedule and then took some oxycodone on top of that. We hid everything now, so he does not have access to it.
I will let you know if anything changes, and I am trying to hang in there.
Hugs LisaOctober 11, 2007 at 12:59 am in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16640
Dad is not doing well again, this is the worst I have seen him. He is complaining of pain again, and is now confused and hallucinating. He started vomiting again yesterday, so we are unable to keep the least little bit down. I am certain that he is dehydrated which would possibly be causing this. We called his Primary Doctor and he suggested getting him to the hospital to at least try and rehydrate him. Dad will not go. He has only been awake for maybe 1/2 hour since 8PM last evening, and it is now 8:30 PM the following day. He ate a jello when he was awake and vomited it back up 10 minutes later.
I don’t know what to think, or do for that matter. He is so strong willed and we can’t get him to budge. On top of that he is now so confused that he is getting nasty and aggrevated.He is scheduled for a CT Scan and PetScan tomorrow AM, so I am hoping that once we get him to the hospital, they will do something for him. The ride to the hospital is 1 1/2 hours away, so I am not looking forward to all the travel time with him being so sick.
I am very restless, and worried that we are going to lose him, much faster than I ever thought if we can’t get him to cooperate. I cannot just pick him up and carry him out of the house and take him, because I have to respect his right to make his own choices.
I will write again later on, I am going back to check on him again.
Thanks For Listening,
LisaOctober 10, 2007 at 10:11 pm in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16639
Thanks For your Support……………
LisaOctober 9, 2007 at 4:59 pm in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16636
I hope this post finds you well today. Everything you wrote is so true and they are the points I need to get across to my siblings. With your permission, I would like to forward some of what you said to them, so maybe they will get a better understanding of how Dad most likely feels. He is a man of little words when it comes to his health and well being, however I know he feels exactly like you.
We are leaving shortly for the hospital once again, he is scheduled for the MRI of his brain to rule out possible mets. I am very hopeful that noting will be found, as he does not seem to show any symptoms leading us to believe it is there also.
I will write tonight, and let everyone know how it went.
Best to You, and Have a Good Day,
LisaOctober 9, 2007 at 2:51 am in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16633
Do not ever think that you are bringing me down, you are just being honest and truthful. It is true that I am very frustrated with the medical field, and giving Dad hope with the Chemo. I am very afraid that if he decides he wants to try it, it may very well be too much for his body to handle, and I could lose him to the treatment and not the cancer.
I am very skeptical that the Chemo would give him better quality and quantity of life. Currently on his new pain meds, he is doing much better. I am not saying that he is any where near his old self, for I do not think I will ever see that again. I just want him comfortable. Sure I would like to see him awake more, so that I could spend more time with him, but that would be selfish of me to ask for. His body is doing what it needs to do, and far be it for me to try and change that.
I do not know how much time I have left with him, and that is whats haunting me the most. I watch him sleep and sleep, and get excited if he eats something solid, how lame could that be. My heart of hearts tells me that my time with him is short, as much as I don’t want to accept that. I am trying to make positive memories everyday that I have with him, so I can tell those stories about him and for him. He still has such a sense of humor.
All I know at this point in time, is that I Love him more than my words could ever describe, and I know you understand this, because you loved your Mom the same.
My hope as of today is to just have another day with him, and tomorrow I will hope for the same until the hope is taken away from me.
I know how difficult it must be for you to talk about your Mom, but ya know what, you are keeping her spirit alive and letting her go on in someone elses heart. What a special Mom she was indeed.
My Hearts Breaking,
LisaOctober 9, 2007 at 1:43 am in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16632
Hi Missing You,
I guess sometimes I feel the same as you stated. My Dad needs me now and I can’t help him on his journey. Growing up as I kid, I never wanted for anything. My Dad would work 2 and 3 jobs to support his family and he was always such a hard worker.
I can remember getting so excited when we would see him, because during the week he often did not get home till we were already in bed. He would often come in my bedroom and ask if I needed money for pencils or anything else for school, or just slip me a little spending money for the ice cream truck.
I am so grateful that we finally seem to have gotten his pain under control, his facial expressions are back to normal, except for the weight loss. He has a little more of an appetite, so he is eating a little solid food. My concern now is he is sleeping so much that he is not taking in enough fluids. He urine is becoming very concentrated looking. I am going to address that with his doctor’s.
I appreciate all your support, and taking the time to read and reply to my many posts.
The Brightest Of Blessings go out to You…..
LisaOctober 8, 2007 at 8:50 pm in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16631
I know I have told you once before that I admire all your strengths and I so do agree with your outlook on things. You are a strong woman for sure.
If my Dad were as young as you and had a ten year old son, I would be pushing to try the Chemo. I am not hopeless at all, I am just more realistic, and I want quality of life for my Dad, not quantity if he is going to be sicker than he is currently. I don’t know what part of that they are having difficulty understanding. You are correct in saying that they will have to come to terms with the guilt in thier own time.
I have to be here for my Dad and my Mom, I have to be strong when inside I feel weak. I treasure everyday, and will continue to do so, for as long as I have with him.
As for you, you keep me posted as to how you are doing and managing everything you have too. You are in my thoughts always, and keep up the fight until as you said, enough is enough.
Luv LisaOctober 8, 2007 at 7:37 pm in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16628
Well Mom spoke to Dad’s Primary Physician who for 20yrs has taken care of the both of them. He is the kind of Doctor that will call you back no matter what time day or night, and spend an hour or so on the phone with you explaining things if thats what it takes. Anyhow, he says that it is definitely CC without a question in his mind. He does not believe at all that there is any cancer in his lungs or brain. He is firmly sticking with the original diagnosis.
He is also recommending to not try the Chemo Therapy at all. He does not feel Dad is nearly strong enough, and it WILL make him incredibly sick and could quite possibly push him over the edge. Dad slept for 19 hours before getting up today, so not sure how much is the cancer and how much is the fentanyl patch. Has me a little worried because for all that time he is taking nothing in, no liquids, no food.
Dr. O’Neil did say that the PetScan is a good thing to follow through on as it will tell us where the cancer is invading. He is scheduled for an MRI of the brain tomorrow at 4:15 and the PetScan is on Thursday at 10:15.
I am taking alot of grief from siblings regarding my attitude towards it all. They are telling me that I am taking hope away from them by being realistic. Mind you that none of them have bothered with him in 20yrs. I try to explain to them that Mom and I are the ones living with Dad and watching him everyday. They of course are now calling a few times a week to see how things are, little late in my mind. Mom and I seem to be in agreement with everything, and we are going to do what is best for Dad, not everyone else. I am feeling angered and bitter towards them, but I do not let it show.
Sure I have a little hope sprinkled on top of the probable outcome, but I do not think they understand what this cancer is doing to him on a daily basis. I am not a true believer in Chemo, unless is it used in conjunction with a possibly curative surgery. I also do not think it is wise to try on someone already so debilitated and weak. I tried to explain to them that ultimately, it is Dad’s choice, and we will stand by him. However, the more I think about it, I do not think it is going to change anything at this point.
I will continue a little later tonight. I have to go feed the horses and goats, and get dinner started.