51 (edited by Missing U Tue, 02 Oct 2007 18:56:29)

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

Hi Lisa- what I did was hope for a miracle, but inside I had to be realistic with what was happening.  My philosophy is that we never know what is in store, so temper your realism with a dash of hope, because many miracles have happened and continue to happen each day.

This is your dad's experience, for the most part... I really tried to gauge what my Dad needed from me and tried to react to that. If I felt he needed hope, I gave it to him. If it was reassurance he needed that we'd be ok, I tried to do that too.  There were times when I just wanted to cry and cry, in front of him telling him that this was so unfair and I was just so heartbroken that this was occurring.

My Dad had a hard time with emotion... extreme emotion... he was ok with tears, but not with heartbreak.  My mother felt strongly that we shouldn't show our emotions around him so as not to deflate him.  So, I imagined a moment where I'd have a talk with my Dad as is recommended in all those books... but there was never that "moment"... it was not my choice... please try to keep in mind that there are so many resources out there to tell you how to let go, but those resources don't speak to every situation.

I was not able to have the talk I thought I should have because there wasn't the right circumstance.  I felt that I was robbed of an opportunity until I realized these books are often written for an ideal and a norm. Lisa, there is your situation and that is unique.  You do what you feel is right and what is in your heart to do and say. That is what will pull you through.  I also realized that that "talk" was more for me... I refocused on my Dad. I was so lucky that in my life nothing was ever left unsaid with my Dad... he knew how loved he was and I am so grateful for that.

So many times I wanted to chat with him and share memories, but towards the end he needed rest and I was only able to just be with him silently. But there is nothing wrong with just being there.  That is important too... that is rarely mentioned in those accounts.  Illness is exhausting... there must be a comfort  experienced by our loved ones when they open their eyes and see their closest loved ones there, not expecting anything more from them than their very presence. So... don't have any expectations for yourself and for the process.  Follow your heart.

Think of what will sooth your dad and try to do that if you can.  Those last few weeks when my Dad was sleeping a lot I read Final Gifts which comforted me much.

Lisa, I don't want to be the reason you lose hope... but if you find that things look like they are not going to improve and if there is an end in sight, one thing to keep in mind... I don't know what your religious beliefs are and I don't want to preach mine... I believe in a life after this one... at the end of my Dad's life I imagined that my mom and I were holding his hand just until someone else took it on the other side.  I saw it as a sort of birth for him and as such I wanted to help him in that moment by providing love, support, telling him what I felt, etc. It might sound odd, but I truly felt that by doing that we were helping his transition be a peaceful one.

So... your best course of action is to be aware.  I'm not suggesting to suppress emotion, but be aware of what your dad is saying and wanting.  He may not want to take his meds and that is his choice, but there are some meds that will really help with the pain. Make sure you investigate side effects too because the stronger the med, the stronger the side effects sometimes and as a result, more meds will be prescribed to deal with the side effects. Also, my Dad experienced difficulty with nausea and vomitting that the meds didn't help with. Eventually it was discovered that his stomach wasn't absorbing the meds properly, so he took them intervenously and that helped him immensely.

My prayers are with you and your family hoping that your dad will be able to be helped.

I know how very difficult this is, Lisa... your dad is lucky to have such a caring and loving daughter to watch out for him.

Bright Blessings,

Missing U

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

Missing U, you are so right! Those books that tell you to talk about every aspect of death just DON'T apply to everyone. My mother and I never really got to say good-bye or go through the details because I could see that she would get depressed if I brought up the subject gently, so I just didn't bring it up anymore. So much depends on the person's personality and some people don't want to hash it all out. I still feel regret that I didn't say a proper good-bye, but that's the way she wanted it - she wanted to feel that there was still some hope, even to the end, and I wasn't going to take that away from her. She was so angry at my stepfather for not saying good-bye before he died, yet she wound up being the same way. You never know how you're going to react to the thought of dying until you actually go through it.

Lisa Ann, the most important thing Missing U said was about respecting the other's wishes and going along with whatever they want. Lisa Ann, you know your father so well that you probably know what he's comfortable with in terms of talking and such. Sometimes you have to bring up painful subjects anyway out of necessity - like talking about hospice or "do not resuscitate" orders or other urgent matters - but if he wants you to be in denial or be silent the rest of the time, then that's what you should probably do. I was so in tune with my mother that I always pretended to be positive, not wanting to add to her stress. But I did sympathize with her and coddle her, too, which I think she really needed and appreciated. Once my mother mentioned that she would like a pastor at her funeral but she quickly changed the subject and lapsed back into silence so I didn't push it.

At the end of her life, I tried to make sure my mother's every request was fulfilled - even the irrational ones. Two days before she died, she worried that she hadn't seen a doctor in a while, and even though I told her that hospice is all about AVOIDING doctors and there's nothing they would do anyway, I knew she was stuck on that thought so I called the hospice nurse to come in and see her just to check her out physically. This made her feel so much better. Then she insisted that she needed a refill of one of her nausea meds, even though she had about 10 of them left. My sister didn't seem to understand that you ALWAYS respect a dying person's wishes, and tried to reason with her, but I just went out and got the refill for her meds, which cost $100 and she never even got to use ONE, but I don't regret shelling out the money to make her feel better. Then, that last night when she had to go to the bathroom, my sister got out the bedpan and made my mother very upset - so I motioned to my sister to help me lift my mother so we could take her to the bathroom. My sister kept arguing and saying that we shouldn't do that, she should use the bedpan, but I insisted as my mother got more agitated, and we finally managed. My sister STILL doesn't see how that was the right thing to do -- WHATEVER my mother wanted, I would give to her - she was dying and in pain! I would walk over broken glass barefoot if that gave her a tiny modicum of peace.

My mother also worried about taking so much morphine at the end, and wanted a pain patch too - and I couldn't explain that addiction was the least of her worries - she was so afraid of pain so I fashioned a fake pain patch with the help of the hospice nurse and put it on my mother's shoulder so she could feel better - then we got the real ones the day she died. Yes, I was lying to her, but it was the right thing to do if it made her feel better. I also told her that my father had just died - he had been dying of brain cancer for a year and she always jokingly said "that bastard is trying to outlive me!" He died a week after she did, but I told her he was dead while she was lying unconscious so she could feel like she could let go. That seems petty when taken out of context, but he made her life a living hell so it wasn't the way it seems.

My mother and I don't have any religious beliefs, just a kind of scientific spirituality - everything returning to the earth, with maybe a chance that there's an afterlife - but when she was dying I said the same things to her that I heard her say to my dying stepfather:"You're going to see your friend Maryann, who died so young - she'll be so thrilled to see you! You'll see Dennis and Slash (the dog) and Dave - they're all waiting to greet you, won't it be wonderful?"  I don't believe this myself and my sister was amazed that I would say those things, but I know those were words that comforted her and took away some of the pain and fear. I told her she could let go and that we would be okay - and as soon as she took her last breath, I said, "Mom, I lied, it's not okay to go, I won't be okay!!" But I couldn't say that while she was alive.

I've gone on and on again - I should just create my own thread like Kate, it just seems like we have to re-live these things over and over again to get them through our thick skulls. But I hope my experience and Missing U's experience can help you at least in not feeling guilty that you didn't say all that you had to say. Definitely say "I love you" and follow your instincts about the rest. And you know what's best more than anyone, except maybe your mother. You're a wonderful daughter and I know your father treasures you, whether he's demonstrative about it or not.

Sorry for the long post, and even sorrier for the pain you're going through-
Joyce

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

My aunt is dying of bile duct cancer as I write this message.  She was diagnosed 5 weeks ago - she hardly displayed any symtoms before - mild GERD, nausea, fatique etc. were all she  experienced - no itching, no jaundice, nothing else - so she simply thought she had the flu -

This was a silent cancer for her - as when diagnosed it was advanced - she went into the hospital for a stint and had a pump put in instead - immediately the pump wound site became infected - then her veins collapsed which necessitated a pic line and that became infected - so 5 weeks later she has 4-7 days to live -

What is this?  How can this attack so suddently - we had never heard of bile duct cancer and thought that pancreatic cancer was the most lethal and swift, but this cancer is worse?

She has not been in a high risk group (liver disease, Hep C, Aids, Alcoholic etc.  she was just a a normal wonderful and giving person and now she can't even communicate so we will never hear her lovely voice again - she is alert  and sort of reponsive in hearing at this time - she just stares into space, but she listens intently...

Have found out that the hearing is the last to 'go'...

Will post more later - her name is Babs - so pray for us -

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

Marley,

I am so sorry to hear about your Aunt Babs. Her diagnosis and advanced disease sound much like my Dad's. It was also only 5 weeks ago that he was diagnosed with this terrible cancer. I too thought that Pancreatic cancer was the worst you could ever have to deal with until this cancer called CC. I think in my Dad's case, he had some symptoms going back to April, such as fatigue, stomach pains,nausea, loss of appetite, etc. He never really complained, so who would know. He is not at the stage your dear Aunt Babs is at this time, but not far from it. He has not had to have a stent placed or any other type of drainage, so he still has enough liver and bile duct function.

I am so sorry that she is suffering, and fading so quickly. I cannot imagine being told that she only has 4-7 days to live, thats not enough time for you and your family to even begin to prepare for what is happening.

If you read the previous posts on this thread that jmoneypenny and Missing U have written in response to my many posts, I think you will find much needed help in coming to terms with all of this.They have both been there for me since my very first post, and continue to help me through this difficult time in my life. Their personal stories are full of true experiences and sound guidence. I do not know what I would do without them. It is sometimes very difficult to talk to another family member who is so close to the situation at hand, and of course family members who don't really seem concerned. My Mother and I are dealing with this everyday, and watching this disease take him away piece by piece.

As they have told me so many times, never give up hope, but prepare for the loss.
My Mother and I live everyday with my Dad to the fullest, trying to accept what is happening, however,  not giving up hope.

Please keep in touch, we are all here for you and your Aunt.

Hugs, Lisa

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

Joyce and Missing U,

I do not know what to say to the both of you, except thank you both for being here with me through this difficult time.
Your guidence, support and advice are taken to heart, and have truly helped me.
So very much of what you say, can be applied to my unique relationship with my Dad. I will tell him just how much I Love him, when I beleive the time is right. Mom tells me that he knows that, but I have to tell him again myself.
He is not a religious man, and I do think he believes that he will just be returned to the earth as it may. I however, have the hope that life does go on past our time here on earth, and that maybe I will be with him again one day.

For now, I am still taking things one day at a time. I read and re-read your posts, as I do find much comfort in them. I also share them with my Mom, in the hopes they comfort her also. The only positive thing about all this, is it has bought my Mother and I closer than ever, and I am thankful for that alone.

I will update you both tomorrow after the first of 2 Doctor's appointments scheduled for this week.

Always stay as special as you both are. Your Mom and Dad would be soooooo Proud of the both of you.
Lisa

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

Well the appointment with the Gastroenterologist was a waste of time as far as I am concerned. He told us nothing.........
He states that the CC is not the primary, but gave us no indication of where it may be.
He was beginning to recommend a Colonoscopy, until Mom told him that he meets with the Oncologist tomorrow, and then said he may not want to do that.
Nothing indicated the cancer is in his colon, his lungs are clear etc. He did not seem worried about anything and just treated Dad like he was a number. When we asked about the weight loss and inablility to eat (44lbs in 5 weeks), he said to just do the best you can. Dad has had nothing again today except some V8 juice.
I am soooooooooo MAD and Frustrated right now I could spit bullets. We are just watching him fade. He is so weak, walks hunched over, and is losing his balance.
He was only awake today for the few hours it took to meet with the Doctor.

I do not know what we will do tomorrow if this Doctor doesn't tell us something or do something to help him. Will write tomorrow and let you know how its goes.

Lisa

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

Hi Lisa,
  So sorry to hear about your dad. If it is CC I hope he doesn't suffer, it is such a painful cancer. My husband was 52 when he was diagnosed. His lived for three months. I will keep your family in my thoughts and pray for the best. 
Sandy

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

Marley,

   Boy does that sound familiar! My husband thought he had the flu. Within one week, he had turned yellow and quit eating. In the second week he was on TPN,  had two cholangiograms and a stent put in his bile duct. We were shocked. Where had this come from? He died ten weeks later. My kids and I were just devastated and numb!
I wish someone could explain it to me.
I will keep you in my prayers, and I'm so sorry to hear about your Aunt.
Sandy

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

Lisa Ann,
So sorry you have to deal with insensitive doctors as well as the trauma of watching your dad suffer. I had the same experience - the gastro guy wanted a colonoscopy (as if we need more time in waiting rooms and then undergoing painful and unnecessary tests!) Your guy may not know even if it IS  cc - our gastro guy didn't know and the oncologist had to tell us, so hopefully your dad's oncologist will be a little better informed AND have a nice attitude - is that too much to ask?? I would be mad, too - in fact, I'm mad on your behalf! I have so little respect for the medical community - even when they know what they're talking about (which isn't often), they have a terrible bedside manner and sap the hope out of everyone. I'm sure your father would refuse to have a colonoscopy at this point, but if he's thinking of it, try to dissuade him, as it really is a stressful test and even if it came up with anything, there's nothing they could do about it. You have to drink all those gallons of fluid before the test and I'm sure it would make your father throw up since he can't keep anything down.

I'm hoping the oncologist gives you some definite answers, at least, and some prescriptions for pain and nausea. There are some appetite-enhancing drugs you might ask about also, though I have no experience with them - just heard about them on this board.

Your father is NOT a number, he's the most important person in the world to several people and I'm so upset he's not getting the respect he deserves.  Hang in there!!!

By the way, thank you for all the kind words you have to say - and I must thank you for letting me vent my own frustration and grief by corresponding with you. It's such a relief to speak with people who are going through the same emotions and turmoil and it's a great therapy for me - though I'm sorry you have to go through this at all.

Best of luck tomorrow,
Joyce

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

I don't think I have responded to any of your posts Lisa-Ann. I have been reading though, and I am horrified at the way the hospital has treated you all. I wish I could say something that helps, but I have nothing. I am so sorry you and your family are having to go thorugh this. I hope you will find someone in the medical establishment that will treat you all with kindness, and help you with what you are going through.
I don't know. WHY are these Docs sometimes so hard? Do they really have to be? The human touch is SO important during such dreadful experiences. Don't they realize how much kindness matters, and how much a difference it can make when dealing with this stuff? Grrrrrrrrrrrrrrrrrrrrrrrr.

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

Well here it is, the outcome of today's appointment with the Oncologist:

His interpretation of the Liver Biopsy is non-small cell carcinoma (Lung Cancer). This is what he believes to be the Primary, that has metastized to the Liver, Lymph Nodes and Biliary tree. He is  unsure of the CC Diagnosis. Dad just had Chest Rads taken a few weeks ago, and his lungs were clear. No difficulty breathing, no coughing, etc.
My Question of course is why can none of these Doctor's agree with a diagnosis???

It has been quite a roller coaster ride for all of us and we still feel lost.
He is recommending an MRI of the Brain ( Dad complains of dizziness and the feeling of water in his ears that comes and goes ) to rule out Brain Cancer. Secondly, he recommends a PetScan to rule out Bone Cancer ( Dad complains of Abdominal Pain that radiates to his upper back). Lastly, he is recommending Chemo, a combination of Gemzar, Carboplatin and Avastin. He says although this is not a cure, it should make him feel better and give him a better quality of life than he currently has.He suggests giving it a try and to see how well he tolerates it. My concern is his current physical condition. He stated that if this were his Father, he would at least try it and see.

He did address some of his symptoms today and scripted out Fentanyl 50,mcg/hr to control pain and still use the Oxycodone for breakthrough pain. 10mg Prednisone to help control inflammation possibly causing pain from the liver tumors and too increase his appetite. Compazine to help with Nausea along with the Zofran he is currently taking.

To our surprise, Dad has elected to give the Chemo a try, so he must have hope and is not ready to give up. Oncologist says if he does nothing at all, he could be looking at 4 months and it will not be of good quality. He also said that the chemo is not a cure, but should make him feel better and extend his life. I do not know what to think or who to believe. Dad is down to 168 lbs (45lbs lost) and is weak. Who am I to take away his hope, it is his decision. I am afraid, worried and scared beyond description at this point in time.

All of his symptoms are classic symptoms of CC, although he is not jaundiced (very slightly). The abdominal pain, the nausea/vomiting bile, no appetite, marked weight loss, etc. What will they tell us next??? What will they diagnose it as next.
I will write more later as my brain feels like mush.........

Lisa

62 (edited by Lisa Ann Sat, 06 Oct 2007 17:35:45)

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

To All My Supporting Friends on this Board:

Well, I feel slightly better today after getting a little sleep. I was actually up very late researching and trying so hard to find answers that I need. I think I only slept about 4 hours and it was not a good sleep.

I am very confused about all that the Oncologist had to say. Everything is explained so fast, its inpossible to remember everything. I know he said that trying the Chemo could possibly extend his life, and make him more comfortable etc. My questions are as you Joyce noted, How can you treat a cancer of unknown primary? He says based on the fact that the Biopsy concluded that it is non-small cell carcinoma, 90% of these are Primary Lung Cancer. Is he basing that also on the fact that my Dad was a smoker up until about 7 years ago, and he still smokes a pipe? My thoughts are, if lung cancer is  the primary, and his liver and lymph nodes are affected, then why are there not any visible tumors in his lungs? His liver is full of tumors and his lymph nodes are very enlarged, so if it is this bad, wouldn't you think the lungs would be even more involved?

I guess I now have to wait and see what the Brain MRI and the PetScan show next week. I am just having a really difficult time acceptiing that Lung Cancer is the Primary. Up until he was diagnosed with CC 6 weeks ago, he could still climb ladders, work better than a 20 year old, and be so physically active. Seems to me that he would have had some trouble breathing, coughing, wheezing etc. He has none of those complaints. Only symptoms he had were nausea, weight loss, vomiting bile, stomach pains and sleeping alot more than usual. I surely do not know what to think.
I spoke to Mom about getting a second opinion on the biopsy, and also requested getting copies of all his records and tests results, so I can pick them apart.

On a much needed positive note, as of late today, Dad is saying that he is not painful and that the nausea has somewhat eased off. Soooooooo, maybe the Fentanyl Patch, Pred and Compazine are helping. He actually looked better today than I have seen him in awhile. He asked Mom for a tuna sandwich today and ate 1/2 of it, not just jello or water ice. My other concern, is he feeling a little better because he thinks there is some hope? He was now told 4 months and maybe longer with Chemo, and he is no longer thinking 2 weeks? The last thing I want to do is take his hope away, however I do not want him to have false hope.

It is especially hard for us to now be told after all these weeks that there is some hope when originally there was none. As difficult as it was, we were trying to accept what was happening and preparing for what lies ahead. I do not know that the Chemo is the way to go, but that is his decision and I respect that.

I am back to researching and researching till I cannot read. I am so tired of thinking and I cannot shut my brain down. I still have so many questions that are not being answered.

Thanks for listening once again, especially Joyce and Missing U.

-Lisa

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

Hi Lisa- It's very frustrating not having a definitive answer.  When we were searching for my Dad's primary, it took about four weeks.  During that four weeks I felt every grain of sand move through the hourglass and I was so worried we'd run out of time.

I couldn't believe they were having a hard time finding the primary... where did that leave us?  I tried to have them do certain blood tests- namely the CA-19 to find out in an uninvasive manner what tumour markers were triggered. Perhaps you can ask for certain blood tests that will help narrow the search?

It sounds as if your dad is feeling better and that is wonderful news.  The fact that he was hungry is so good to hear and sounds very positive.  It also sounds as if he has a more hopeful perspective and an individual's mental outlook can be a big source of healing.  Your dad is trying and when he feels a little bit of his strength returning, he will probably feel even more hopeful and who knows what positive effects that will have? 

Although his search for the primary has not concluded yet, on the positive side, there is still a chance that for his cancer, there are more options than if he had CC. This is what I hoped for with my Dad. It might be a bit of a reprieve. 

You asked how could there be no lung involvement if they determined that his primary was lung. At one point the doctors were saying my Dad had cancer of an unknown primary and I asked the same question.  I was told that there may have been a tumour but my Dad's immune system may have broken it down and that it only took one cell to "land" in another area to metastasize. This angered me greatly... to think that my Dad's immune system worked and fought off a predator, only to have a small spec resume it's invasion elsewhere. What I understood with cancer of an unknown primary was that they can determine the general type and use chemo that targets that type. It is still a way to treat the symptoms, the unfortunate aspect is that a specific target is more effective. 

What I learned was that it doesn't really matter which cancer one has, the doctors can be dumbfounded.  Cancer appears to be a determined foe... it can manifest differently and individuals can present differently as well.  My Dad's CC metastasized to his bones and I am told that this is rare.  That keeps me wondering if he did in fact have CC.  The other day I wondered if they made a mistake, I was actually going through the situation in my mind when I recalled them doing  a procedure to place a stent  to help his bile drain... obviously they wouldn't do this if it wasn't CC.

It's scary to think that medical professionals don't have all the answers, but it does happen.  What I have learned is that regardless of the diagnosis, the journey is similar... Hang in there, Lisa... we are here to support you and your family.  I am really pulling for your dad and I am so glad that he is feeling better. 

You mentioned that you didn't want your dad to have false hope... I think that as long as a heart beats, there is hope.  Hang onto that, Lisa.  I recall what my dear friend said to me, these were the words that pulled me through and pulled me up "let him see hope in your eyes".

Prayers going your way,

Missing U

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

Hi Lisa Ann,

Missing U pretty much said most of what I wanted to say, but she put it so much better!  I'm primarily very glad to hear that your dad's discomfort has eased somewhat, as that is the most important thing. I know you and I and Missing U can obsess over where the primary cancer is, and all the anatomical details, and I STILL look over my mother's medical tests, as if looking for some kind of answer to the mystery of where she's gone - but some other wise people on this board once advised me that I shouldn't spend so much time obsessing over the details, and just concentrate on being there for Mom. Easier said than done -- I'm the kind of person who has to KNOW and analyze everything, and I guess you are, too - nothing wrong with that! Try to get a second opinion and some more insight, but if it turns out that the doctors just can't come up with a definite diagnosis, I guess there's nothing more you can do and you'll have to let it go. My best friend's father had the unknown primary - even after autopsy they didn't figure it out! - and I know it drives her crazy and I sympathize so much with that. The fact is, that even if it IS primary lung cancer (and thank you for clearing up how that could happen, Missing U - I didn't know about that) - it's mainly concentrated in the liver and bile ducts and that's where it's doing the most damage. So we may as well say that it's cc, no matter what the doctors may call it, because that's the effect it's having on your father's system.  And I do realize now that they can figure out which chemo to use based on the type of cells taken from biopsy - I remember the dr. telling my mother that Gemzar was used on breast cancer, which is a ductal cancer just like cc.

I'm sure your father's spirits are better in part because of being given some more time on this earth - no doubt about that, and I'm glad he feels better. Even my mother, the most practical, pragmatic and realistic person on earth, who was totally aware that she had a death sentence, would occasionally talk about how she might be the one to beat the odds. Missing U is right - you can't take that away from them.  Unless he becomes so hopeful that it's totally unrealistic, I would just let him have his hope. But I want to be honest with you and I'm sorry if it sounds brutal and cruel, but you can't afford to think that he's going to beat this thing completely. You may buy more time, maybe a year, but the end is going to come and the chances are that he won't live another 5-10 years. There are always miracles and you should keep hoping for one, but they're the exception and if you believe in it too hard you will be even more devastated at his passing. I'm sorry to sound so terrible, but it's just what I would have wanted someone to say to me, so I could prepare--- I knew it when my mother was dying, and everyone kept telling me "Oh no - people with cancer can linger for years and years and go into remission" and they made me feel guilty for trying to accept the fact that she would be gone within a few months. I was the only one researching cc, so I had a lot of information the other family members didn't have, and they were even more shocked than I was at how quickly my mother failed. New Year's Eve she even had a glass of wine with her friends at her home, and three weeks later she was dead. Forgive my bluntness - I would not say this to everyone, but some people have a need to know and would prefer to be told the probabilities - and I think you're one of those people. I'm sorry if I'm wrong about that, in which case please just ignore me!!! Please don't think I'm telling you to give up hope!!!

As for the chemo, I am now very staunchly anti-chemo when thinking of my mother's case, but everyone is different. I think it gave my mother some hope to think that maybe the chemo would help her symptoms and extend her life somewhat. It didn't work for her, but it DOES for many people. I would suggest what I suggested to my mother: try it and see if it helps a bit, and if the side effects are very bad, then you can just stop it at any time. The oncologist told us that her quality of life WITH chemo would be "very bad," and her quality of life WITHOUT chemo would be "intolerably painful." That was very irresponsible and insensitive and WRONG of him, and of course it scared the daylights out of us. Everyone is different - your dad can give it a try and stop at any time if he wants. At least it'll make him feel like he has a chance and he's putting up a fight. The steroids can work wonders, I know - even without chemo. And you can see from some of the posts here that the majority of cc patients who die of this don't necessarily have bad pain - or sometimes just at the very end. Fentanyl, morphine, all those drugs work wonders to keep the pain at bay in most cases. Your dad may have 6 months or a year of pretty decent quality life, with little or no pain - with chemo or without. I very much hope that's the case with him.

Lisa Ann, I'm sorry if I come across as very negative, when you've been given some pretty good news, really. The best news is that your dad feels better and can eat a bit, and I hope it continues that way for him! I'm very happy that he's experiencing some relief - both mentally and physically - and you should be glad for that, too, and don't dwell too much on my doom and gloom. If I've expressed myself clumsily, it's because this cancer is so unpredictable - I want you to be prepared for the worst AND the best. Your dad doesn't have to know every detail, as long as his spirits are up -- my mother didn't want to know ANYTHING about my research and I probably couldn't have told her anyway. Just keeping that hope alive in them is so important, as Missing U said.

Hoping for the very best and hoping I didn't bring you down-
Joyce

65 (edited by Missing U Mon, 08 Oct 2007 07:16:25)

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

Hi Lisa- I have been thinking and there's a few other things that I wanted to say...

Lisa, I firmly believe that no one goes before their time.  This disease, and any cancer for that matter, is different with everyone who goes through it.  That doesn't mean that there aren't certain more common cancers where statistics can point to probable outcomes... but those statistics compare a "mean", they can't consider individual accounts, but need to consider generalities.

I feel it is important to mention this because each journey with this disease is different.  For every story of a loved one taken too soon without a chance to fight is another of someone who beat the odds.  In the hospital I met a man who had lymphoma and was given two months to live.. that diagnosis was almost three years prior to when we met him.  There are several people on this board who have been living with their illness for several years, some who have faced very trying times, but who have pulled through.

Then there are those who were doing everything right who die despite their efforts. Look at the story of Jim Henson (the creator of the Muppets, and the original voice of Kermit the Frog)... it wasn't even cancer that claimed his life, it was a Strep infection... we have cures for Strep, yet at a very young age and with resources available to secure the best treatment, he succombed to an illness that under most circumstances is not fatal.

Your dad is living his journey... the only thing each patient can do is the best they can for their own circumstances.  All we as caregivers can do is the best we can under the very difficult circumstances.  Lisa, there is no right or wrong answer... if actions are based on what is in our hearts and are above all respectful of the wishes of our loved ones, that is the best we can do and that has to be enough. 

I went through a period where I was so angry with myself that I wasn't able to help my Dad... my parents put me through University, and I wasn't even able to help him when he needed it most.  I felt this way despite many hours of research, many questions to the medical profession, arranging a consult with one of Canada and US's leading Oncologist, etc... I know that I did a lot to help my Dad, but because he didn't make it, somehow that meant to me that I obviously didn't do enough. Then, many months later when I had travelled the path a little longer I realized that it was not up to me- we have no real control over life or death... for the most part. There is a freedom one finds in this realization... it is not an absolution or a suppression of emotion... rather, it is an acknowledgement of what is occurring, a strong attempt to help in whatever way is necessary and possible, and a letting go of the outcome, because it is ultimately out of our control. 

I don't want to give the impression that I am relegating all this to a higher power... I have accepted the physiology of illness and my inability to change the cycle of nature.  However, never did I feel that things were definitively not changeable... just as we cannot 100% secure a positive outcome, so too we cannot depend on the absolute worse case scenario.  Not at the stage your dad is at, anyway...

So... educate yourself as much as you feel you need to in order to help your dad make the best decisions possible.  Advocate for him, just as I had to for my Dad so that the medical professionals who helped him understood that this was not just a Metastatic Cancer patient, he was my Dad and he would be given the best care possible and they would answer to me if I felt he was being treated less than appropriately.  Above all, be his daughter... when my Dad became ill, my computer broke... I could only research his illness on my lunch hour at work... this caused me great stress. However, what I was forced to do was limit the research and focus on being his daughter and supporting him in the best way that I could.  That decision was made for me... in retrospect, I am glad that I was restricted from all the research. During my Dad's illness, as heartbreaking as each moment was, I can honestly tell you that I had no regrets... I wore my heart on my sleeve sometimes, I was firm with nurses and I held doctors accountable sometimes, I acknowledged what was happening, but I still prayed for miracles.

Once again, Lisa... I say, this is your dad's story and no one past, present, or future will ever have one like it.  Walking with him on his journey, regardless of the destination will be the absolute best thing you can do for him. It's Thanksgiving weekend here in Canada and this year I find myself thankful for having had my Dad as my guide.  I say a little prayer that the children of this world who are alone or uncared for have someone like my Dad guided to them so that they can experience what it feels like to be loved.  I also pray for those whose loved ones are facing such a life altering illness, that they be given the strength they need to walk along side their loved ones.  Lastly, I pray that those who are dealing with this or any other illness have love in their lives to hold them up and have the best possible care to help them in their times of need.

I hope you know that I wish for your dad what I wished for my own... that he gets the best possible care and that the miracle that was hoped for in the heart of all of us in the palliative care ward is gifted to your dad.

I wish you peace and comfort...

Missing U

66 (edited by Lisa Ann Sun, 07 Oct 2007 18:12:32)

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

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

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

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

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

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.

69 (edited by Missing U Mon, 08 Oct 2007 07:25:10)

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

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

70 (edited by Lisa Ann Mon, 08 Oct 2007 12:39:32)

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

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

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

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.

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

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

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

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

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

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

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

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