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My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Discussion Board Forums Introductions! My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Viewing 15 posts - 46 through 60 (of 125 total)
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  • #16639
    lisa-ann
    Member

    Kate,
    Thanks For your Support……………

    Lisa

    #16638
    kate-g
    Member

    You’re doing fine LIsa, you’ve got it right!
    Much love to all of you x

    #16637
    thecdr
    Member
    Lisa Ann wrote:
    Hi CDR,

    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,

    Lisa

    Lisa, absolutely, use whatever you like! good luck with the MRI, I just had my followup CT yesterday, don’t know the results yet.

    I also wanted to chime in on the hospice/chemo issue. In many states, Ohio for one, you can not enter into hospice care while you are undergoing any kind of “aggressive” therapy, including palliative chemo or radiation. In my particular case, once I make the decision to enter into hospice care, I must then make the decision that I will not be seeking any other care. I can change my mind, but it’s one or the other, at least here.

    #16636
    lisa-ann
    Member

    Hi CDR,

    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,

    Lisa

    #16635
    thecdr
    Member

    Joyce and Lisa,

    Let me chime in here from a different perspective, that of the person WITH the disease. I have a set of tshirts a friend gave me that all say “It’s all about ME!” God bless the two of you for remembering that in the case of your parents. From a patient’s point of view, I need support and maybe some guidance, but mostly respect for any decision I may or may not have made. I don’t need guilt, I have enough of that already, so I don’t need someone telling me that it is my duty to pursue everything possible to stay around. I need, your mom and dad need, someone who will lighten the burden, not make it heavier. I don’t want you to decide for me, but I do want you to provide me with the data I need to make the decision that is right for me. for example, in the case of chemo, the simple question to answer is what is the purpose of doing chemo? Is it to keep me around longer? at what cost? more pain? more discomfort, nausea? One of the things I had (and still have) to help my family understand is that none of the options that are being put before me are for a cure, that door is closed. One of the things that I tell people, friends and relatives, is that I will NOT read any “miracle cures”, websites, etc etc that are sent to me.

    hmmm, I am rambling, maybe this might work better:

    what I want:

    to be with you
    to laugh about old times
    company
    help with the mundane chores that sap my energy
    help me plan my funeral service/make sure my paperwork is up to date, etc etc. Planning my funeral was actually very cleansing for me as distasteful as it was for my sister.
    tell me jokes
    treat me normal

    what I don’t want:

    second guessing my doctors
    infighting
    second guessing my decisions
    stories of people who were “cured” (cancer is not a one size fit all, so don’t profess to know anything about my particular kind of cancer)
    weeping and wailing and gnashing of teeth, save that for my funeral

    Keep doing what you are doing, I know your mom and dad appreciate it, I know I do.

    #16634
    jmoneypenny
    Member

    Dear Lisa,
    I can empathize with so much of what you’re going through, not just because we both have a dear parent with this terrible disease (see, I still talk about my mother in the present tense a lot – I just won’t acknowledge that she’s in the past sometimes).

    I apologized for being a downer because I know people have different ways of coping and I don’t want to kill anyone’s hope, as we all need that to just keep going one day at a time. But like you, I had problems with my family making me feel guilty when I suggested that we should make plans for the end — my sister was in total denial, and our good family friend, my “adopted” brother, Bobby, got very angry if I suggested my mother wouldn’t bounce right back. I know how alone you must feel – as I felt, because I knew from my mother’s symptoms and blood work that she wouldn’t have much longer, and no one else knew and no one else WANTED to know. So I bore the burden alone and tried to put on a positive face for my mother AND for everyone else. It’s bad enough to watch your loved one die, but to have everyone around you in a fog about it doesn’t help either! I’m sure your resentment towards your siblings is well-justified and will get stronger as the days pass – anger is a great vent of all the bottled-up emotions you’re hiding from the world. But you’re a kind and reasonable person, so I know you won’t be eaten up by hostility and hatred – just normal anger, and I know exactly how you feel. Especially since you’re the one closest to your dad, you feel a sense of possessiveness towards him – not possessiveness in a bad way, but I can’t think of the right word — I felt it with my Mom, like I knew what was best for her and I was most in tune with her since I spent the most time with her, before and during her illness. I think I was right – my sister kept trying to drag her to acupuncture and try out new therapies on her, and my mother was just too tired and sick to do any of that. Even the welll-meaning people who kept urging my mother to “EAT! EAT!” drove us both crazy, as you can’t keep nagging someone who’s nauseous and can’t hold much. I put food in front of her, tried to get her to eat, without being too pushy (I hope), since she got so irritated with everyone telling her to eat. OF course she would LOVE it if she could eat and enjoy it – she tried – and the chemo made everything taste funny, so that made it worse.

    Anyway, family can sometimes just complicate everything – I’m glad you have your Mom to be with you to discuss things realistically and go over the options and support you. And your doctor sounds wonderful – even if he’s wrong, at least he has a strong and educated opinion about what to do and what the diagnosis is and he’ll talk to you at length. That’s where it’s absolutely necessary that SOMEONE in the family research the disease – you can talk to doctors and get some answers and understand them. I was treated like an idiot by so many doctors – when my mom got an infection they just told us they were putting her on antibiotics and didn’t say why, so I asked if it was cholangitis, which I’d read about on this board, and they were so shocked that I knew that big word and they could converse with me! Damn doctors.

    My mom never thought she wanted chemo at all, especially since her symptoms weren’t too bad, so I advised her to wait until she felt really bad. About 2 weeks after that, she was so nauseous and in such discomfort that she thought she’d give it a try. I called the oncologist and asked him pretty much for a guarantee that chemo wouldn’t make her quality of life WORSE – of course there are no guarantees, but of course an oncologist’s job is to push chemo, no matter what- I asked him what we should do if we didn’t get chemo, and he said, “I don’t know – but you wouldn’t be seeing me as your doctor anymore.” Oncologists only know chemo – it’s their religion – and hospice workers are the opposite and they always oppose chemo in favor of palliative care. Both sides can be too extreme and fanatical, as every case is different and some people would benefit from chemo, some not. It’s a really tough call to make and there is no right answer, because nobody knows. My mother also said she would try chemo because if she did nothing she felt like she was giving up and that depressed her – she was still holding on to hope, understandably so. So I guess it was worth it for her peace of mind, though that didn’t last for long. Long story short: you’re letting your father make his own decisions, which is the right, loving thing to do – but just make sure he’s not doing it to make the family happy and he’s doing what HE wants. And if you think the chemo is making things WORSE, then do what I did and just take over and tell him he has to stop – or at least take a break. It might be a relief for him to have the decision taken away from him at that point. Actually, my mother’s first chemo treatment, after the side effects went away, gave her about a week of feeling a bit better – so chemo wasn’t ALL bad. The second treatment just knocked her for a loop though, and I don’t know if it’s because she was so far gone with so many tumors, or it just sapped the last of her strength.

    I’m telling you all this partly out of the need to go over my mother’s story till I’m blue in the face, but mostly because I hope it may help you when you have questions about your own course of action, and/or similar experiences and questions crop up for you. You’re not alone in this and I wish I could relieve some of your burden. You’re doing a great job of taking care of your dad: respecting his wishes, being there for him, savoring each moment. That is the greatest gift anyone could ever ask for – don’t let annoying relatives convince you otherwise! You are a very wise and caring person and your parents must be so proud of you – and relieved to have you there. When my mother came home to hospice care, 2 weeks before she died, she begged me, “Joyce, please stay with me – no one else knows what they’re doing , they’re a bunch of nudniks.” (My mother loved to call people “nudniks” and a word she coined herself – “jablooks.” ) It was my honor and privilege to be there for her when she needed it and I was touched that she asked me – she wasn’t the type to ask for ANYTHING as she was so proudly independent. I’m sure your father is relying on you and your mom in the same way.

    I hope you can keep taking one day at a time and basking in the love of your father and enjoying him and his relatively painfree existence for a very long time.
    -Joyce

    #16633
    lisa-ann
    Member

    Hi Joyce,

    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,
    Lisa

    #16632
    lisa-ann
    Member

    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…..
    Lisa

    #16631
    lisa-ann
    Member

    Hi Cdr,

    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 Lisa

    #16630
    thecdr
    Member

    Lisa, you stick to your beliefs, you and your Mom obviously are doing what is best for your Dad and what he wants. Your siblings are going to have to deal with their guilt or whatever in another way. Absolutely pray for miracles, but reality is not the same as hopelessness. What’s that line from “Steel Magnolias”? “I’d rather have 3 months of wonderful than a year of nothing special”, well, in our case I’d rather have 3 months of dignity and not suffering than a year of suffering for me or my family. I am going with chemo for now, but my circumstances are different, I am younger, probably a little healthier (for now) and I have a 10 year old son. But trust me, when things start going downhill, where chemo just looks like it is delaying the inevitable, I will stop. I want my son to remember his MOTHER, not some broken down shell. My doctor’s keep telling me “Quality of Life”, well, quality of life is not the same thing as extension of life.

    #16628
    lisa-ann
    Member

    Hello Everyone,
    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.

    Hugs, Lisa

    #16627
    missing-u
    Member

    Hi THECDR- I am glad that you felt comfort at reading my post. I try to be careful when I post because I don’t want the reader to feel that my Dad’s story will be their story… there are unique circumstances in every illness.

    All anyone has is today. When things are running relatively smoothly, we forget ths and go about our daily lives not giving our mortality a second thought. For me, I always imagined having my parents with me until a ripe old age. When my Dad became sick I became aware of just how precious each moment is… the simple things were even more precious than the big events.

    I have always been one to do my best to make memories… often surprising my parents with tickets to something so that they could experience something new. I would always buy the best seats and make reservations to the best restaurants to make the occasion as perfect as it could be.

    The few weeks where my Dad was sick taught me that it is the togetherness that counts. We had a simple Christmas in the hospital- no one around, no decorations, no turkey… just a simple meal and the three of us sitting together and enjoying being with him. The only thing any of us has is the here and now. It is unfortunate that it sometimes takes these types of life changing circumstances to reinforce this reality.

    I wish you peace and comfort… and what I said to my Dad’s oncologist when I first met him… I am hoping for a miracle and I am praying that God guides your hands in such a way that it is accomplished.

    Brightest Blessings,
    Missing U

    #16626
    thecdr
    Member

    Missing U,

    thank you so so much for your post, it really gave me comfort as well as food for thought as I myself battle through this disease. I too am trying to take a realistic approach to this journey, I tell my friends I am not being negative or defeatist, instead what I am trying to do is go into this battle with my eyes open. As I tell people, you all pray and hope for the miracles, l need to concentrate on the here and now and get through each day. And to the people who continue to insist on “divine intervention”, you know the ones, “My friend was riddled with cancer, blah blah blah”, I tell them that I have faith in God as well, God created my oncologist, so I have complete trust in my oncologist!
    I am trying to do the “housekeeping”, getting rid of old grudges, stresses, etc, so that I can use what energy I have to fight this disease, but if God has another plan in mind for me, I am ok with that too.

    #16625
    missing-u
    Member

    Hi Lisa- it looks like we were both posting at the same time… I posted just prior to your last one… I guess, I was hoping to encourage you with my response.

    I agree with you wholeheartedly, each person is different regardless of the statistics presented.

    I am so glad that your dad is eating better and the pain is being managed… this is truly wonderful news!!!

    Enjoy the precious moments with your dad and if it is appropriate to say to him… please let him know that he has a group cheering him on in cyberspace… if not, just give him a hug from us…

    Missing U

    #16624
    lisa-ann
    Member

    Joyce and Missing U,

    I do not want to sound so repetative, however I must thank you both again for your truthfulness, honesty, advice, and true concern for my Dad.

    Mom spoke to Dad this morning about the possibility of Chemo and he did state that he is unsure. He understands that it may give him a little more time, but he also knows it could go the other way. At this point, he has not made a solid decision. I really think that he thought he only had weeks to live and by this Oncologist telling him that he may have 4 months, it gave him a little hope and took some of the pressure off for the time being. I do not think he will have a year, not the way things are progressing, however I still hope for some quality time that is at least pain free.

    He managed to eat a sandwich again today, so the prednisone is doing its job. He is still not complaining of pain, and that is something we have been trying so hard to get the Doctor’s to address. It was great to talk to him today and not see all that pain in his facial expressions.

    He was reading his newspaper as he has always done, and on the front page of the local paper there was an article discussing burials on private property. He showed me the article and said that this is what he wants. It is the first time he had discussed this with me, and I nearly lost it. Mom has discussed it with him, but her never mentioned it to me. This is were reality sets in.

    As for the diagnosis of the primary cancer, I do know that we may never know this, just as you never really know how much time you have left. They are all statistics and educated guesses and each individual is different. I guess I am obseesing a little because we just keep getting the run around, and in all this time they never considered just trying to manage his symptoms until now. Thats what angered me. No one wanted to prescribe anything, until a diagnosis of the primary was made.
    We will wait for the results of this weeks testing and go from there.

    In the meantime, we are staying positive around him and enjoying every minute we have with him. We will support his decisions whatever they may be, and always be here for him.

    I have more to tell you about concerning some of the reactions I am getting from my brothers and sister-in-law concerning the Chemo and my realistic side versus my hopeful side. I will continue this tomorrow. Dad is awake again, so I am going to spend a little time with him again before he goes to bed for the night.

    Many Thanks to Both of You,

    Lisa

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