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

Hi Carolann,

I am so sorry to hear  that you lost your Mum to this terrible disease at such a young age. I feel selfish, as I have at least had my Dad with me for 20years longer than you had with your Mum.  Dad has not had a good weekend as far as not feeling well. He complains about being dizzy all the time, and I have not heard anyone mention this as a symptom here. I sometimes wonder if there is something else going on, or maybe its his blood sugar being low since he is not taking in much nourishment. I am still very frustrated. I am always here to talk if you need a kind ear to listen. I am sure I will need much support as time goes on.

I will let you know how things are going and don't hesitate to e-mail me if you need to vent.

My Heart Goes Out to You and All Who Have Lost Loved Ones to this Disease.

Love Lisa

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

Hi All,

Well I finally got some more information on Dad's condition. He has a 5.5cm tumor in his liver along with numerous others. He also has 5 lymph nodes surrounding his stomach that are 3cm (way to large). He continues to be in pain, some days worse than others, and still will not hardly eat anything.
His biopsy is scheduled for tomorrow morning to confirm it is CC. After we get the results, they want to recheck his lungs and also his brain for any mets. None of this sounds very promising to me, and I am very worried. We will also talk tomorrow about trying something else to control his pain and discomfort, and we were told to possibly contact Hospice and get that started.
I am seeing changes in his physical appearance almost daily now, and it is breaking my heart. I feel so helpless..................

I will let everyone no the outcome of tomorrows biopsy, as they hope to at least give us some answers.

You are All in My thoughts as I continue to read and re-read all the posts....
Lisa

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

oh Lisa, I pray that everything goes ok for you and your dad.  Yes, I know exactly what you mean about feeling helpless, and the physical changes as well.  I just got some pictures from my sister in law and what struck me was that I had that "sick" look, can't really explain it, but I bet you know.  Do whatever you can for your dad's pain, Hospice is a good place to start.

Lisa Ann wrote:

Hi All,

Well I finally got some more information on Dad's condition. He has a 5.5cm tumor in his liver along with numerous others. He also has 5 lymph nodes surrounding his stomach that are 3cm (way to large). He continues to be in pain, some days worse than others, and still will not hardly eat anything.
His biopsy is scheduled for tomorrow morning to confirm it is CC. After we get the results, they want to recheck his lungs and also his brain for any mets. None of this sounds very promising to me, and I am very worried. We will also talk tomorrow about trying something else to control his pain and discomfort, and we were told to possibly contact Hospice and get that started.
I am seeing changes in his physical appearance almost daily now, and it is breaking my heart. I feel so helpless..................

I will let everyone no the outcome of tomorrows biopsy, as they hope to at least give us some answers.

You are All in My thoughts as I continue to read and re-read all the posts....
Lisa

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

Hi!  I am not on here too much- but I just want to say-liver tumors can be fought.  I was diagnosed 02/07 with advanced cholangiocarcinoma with a large inoperable tumor on the liver.  Well, thanks to Sir-sheres, The tumor is almost completley dead.  My last pet scan showed only 2 little dots of activity.  I feel great, I have not had any chemo yet, this has been my first line of defense.  If you ahve questions, you can vist  the yittrium y90 site and see for yourselves.
becky

becky
blessed are those that are cracked,
for they let in the light!

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

Lisa Ann,

I hope you had some positive news or at least some answers to your questions at the biopsy.

We're all pulling for your dad, we're here if you need us!

-Joyce

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

Hi Joyce,

Thanks so much for all your follow up posts and concerns for my Dad. The procedure went well, and there were no complications. We unfortunatley did not get a preliminary report and we have to wait 5 days for the results. We were at the hospital from 9:30AM till 4PM when they released him. The look on the technician that spoke to us afterwards, did not look promising. I think his liver is pretty involved, and the size of the lymph nodes is not a good indicator either.

Today he felt up to going to the Flea Market as he usually enjoys doing this on Saturday mornings. I have been going, because its time I can spend with him and I enjy every minute. We stopped and got breakfast, and he actually wanted pancakes.
I thought, Great.......He ate 2 pancakes and a cup of coffee. He was doing good for about an hour afterwards and then Up came the breakfast. So frustrating, we get a little in, and out it comes. The weight lose is incredible and as I said before, I am seeing changes daily.

There is hope in my heart, as I can't believe we are going to lose him. However, my mind keeps telling me to prepare, as it is going to get worse. I Love him so much and there is nothing I can do. My heart breaks more everyday, as I watch this strong man's health just deteriorating before our eyes.

I just ordered him some pants and shirts as his cloths are falling off of him, even his watch doesn't stay in place anymore. I just wish we could get the sypmtoms under control, so that he is not in pain and not sick to his stomach all the time.

So once again we wait until sometime next week for a confirmation on the CC diagnosis. However, if it were not that, it is still something not good.

Thanks So Much Joyce for being here for me.

Lisa

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

Oh Lisa,
It's so heartbreaking to hear your story - your dad is a lucky man to have you, as I'm sure he knows - and you're lucky to have him, too. It's so hard to prepare for the worst when there is still hope, so maybe you can just live in denial for a few days until the report comes back with results. That's what I did when my mother had her biopsy - now I remember how horrible it was that they made us wait so long for results - it's really inhuman! My mother was a nervous wreck, but I just kept thinking, "I don't know for sure that this is cc yet, so I refuse to think about it or worry." It was my own defense mechanism, I guess, and dealt with my life one day at a time. Everyone has their own methods that work for them, but that was mine.

I'm so sorry his nausea and vomiting can't be controlled - is he able to get a different nausea med? My mother had several - Kytril, Zofran and another one - and she alternated taking them. She never vomited, just felt queasy. And I had to buy her new clothes too - but BIGGER ones because her stomach was so swollen. I bought her maternity clothes and we got a big laugh out of that - she said she felt like she was having triplets. I hope you and your father get to have some laughter and good times together - I'm not telling you to give up hope! There is always hope, but like you said, you have to be prepared. Keep treasuring every minute with your father - I'm sure I don't even have to say that - and just hope for the best until you hear what the docs have to say. Big hugs and best wishes go out to you and your dad-

Joyce

33 (edited by Lisa Ann Sun, 23 Sep 2007 06:59:01)

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

Hello Joyce,

Once again I thank you for all your thoughts and kindness. It means more to me than I can say. I guess I too am alot like you, because part of me is still living in denial, because I do not want to lose him. My Dad was always special to me, and I love him more than I could ever tell him. I feel so compelled to tell him everything I am feeling, but I hesitate because I don't want him to give up or see how upset I am. I try to go on as you said, one day at a time, and just do the normal everyday things.

Hopefully today I will get to spend some time with him outside on the deck since the weather is so nice here, and listen to his stories that I have heard a million and one times. I will treasure those stories always, and they will always bring a smile to my face.

Today's agenda consists of scrubbing and cleaning a very large bird cage as my Parents are giving up thier Blue and Gold Macaw to a rescue to find a forever home.
They are unable to spend enough time with him now, and he requires that attention daily. I know I have not mentioned before, but my Mom has more health problems than I could list here without it taking up pages and pages, so therefore things are a little more complicated, She is actually recovering herself from surgery that she had right before Dad's diagnosis. She has had several surgeries over the past year, and none without major complications. Currently a visiting nurse comes out daily to tend to her wounds. I feel so bad for her, because this bird is so special to her, but she made the decision even before Dad's illness to give him up.

We are animal people, however I cannot keep him as I have one of my own along with another talking parrot. I also have 4 horses, 4 goats and 3 dogs, 2 of which are Great Danes (Small Horses). They all keep me busy, and take my mind off of things, which at times is a good thing. My parents also have a yellow lab, so really there are 4 dogs in the house. Some day, I will e-mail you some pics of the clan. You can see some of them on my Myspace page at myspace.com/mantlegirl. There is also a slide show of my Dad building our barn just a couple years ago.

Again, thanks so much for all your support, your Mom was lucky to have had such a caring Daughter.

Lisa

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

Hi again Lisa,

Just wanted to say you're a woman after my own heart - an animal person like me!! Though I'm in the city so I don't have horses or anything, and on top of all that I'm allergic to every mammal in the world, I do have one cat now because I was fostering abandoned pets and then couldn't give them up so I found homes for all of them but my elegant kitty is so skittish that I just couldn't relocate him again. He won the Whiskas Cat of the Year photo contest in 2001 and I always brag about him and his dashing good looks. My mother and I had a dog together - poodle mix for our allergies - and he just died 4 years ago after 16 wonderful years. We were practically planning a family suicide party when he had to be put down - but I swear he was reincarnated in the form of my 4 year old daughter - smart, bossy, tyrannical. I still miss him so much.

Anyway, I looked at your animal pics and I love them. Good luck with the macaw - that's a very big responsibility for someone to take on, so I would think it would be difficult to find a suitable person. We had all kinds of birds growing up since we were allergic to everything else, but then my sister and I developed allergies to birds, too. It's just not fair!

Back to reality for one minute: I'm so sorry to hear that your mother is going through medical issues, too. This must be so tough on both your parents and on you, you must be so stressed out.  Keep hoping - things could still look up! Here's to good results-
Joyce

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

Barb,

Thanks for all your replys and posts regarding my Dad. He is much older than you and doesn't quite have the fight anymore. We are just taking things one day at a time.

You however have all the reason in the world to go after treatments, after all you have a precious 10 year old little boy who needs his Mommy. I try to put myself in your place, and I admire you for your courage and great attitude towards this disease. I am pulling for you and hope and pray you have great success with the chemo etc.

As for Hospice being a good place to start for my Dad, the hardest part will be explaining it to him. He is a very PROUD Man, and does not want anyone fussing over him etc. We are hoping when the resuts of the liver biopsy come back this week, that we can move on to the next step. The priority being to control his symptoms so we can all enjoy one another.

Will continue to follow your posts and keep up with how things are going for you.

Keep up the Fight and never Give in.

Luv Lisa

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

Hi Again My Friend Joyce,

Yes we are Animal Lovers, and Believe it or not, I get that from my Dad. He would rather be around animals than people anyday. I grew up in the city too, so we only had cats and dogs when I was younger. Then Dad decided to start us with a couple ponies and we actually boarded them in Philadelphia at a very small stable. We would spend our weekends there with my Dad and those are some of my best memories.
We eventually got out of the horses as everyone was getting older and invlved in sports and other things.
When I was 15, we lost my Mother to Breast Cancer that metastized to her lungs and then to her bone. She fought hard for over a year, and finally succombed to the disease at the young age of 42. She left behind 6 children and a husband. My Dad did eventually find someone else to love and married a woman with 5 children of her own. So needless to say we were almost the Brady Bunch times two. 11 kids, wow, it was something to see. My Mother has been a great mother through all these years, and did lessen the pain of losing my biological Mother. Things were not always perfect, as it is very hard to put two large families together, but we managed. I love her no differently than if she had given birth to me.

I got back into horses when Dad and I were sitting in the hospital talking while Mom was recovering from GallBladder surgery. They lived on a 5 acre property with a barn, and Dad said I could board a horse there and he would take care of the daily chores till I could come up on weekends. Again, those couple years were great, and I have good memories and spent alot of time with both my parents.

In 2002, Dad and Mom went through some financial hardships, and were faced with losing thier home. At the same time, Steve and I were looking for a property to build a home and barn. We found a 13 acre lot, and built the house to include a seperate residence for my parents. We live on the first floor and my parents live on the second. They have thier own kitchen, laundy,bath etc. It works out well as we all have our privacy, yet can be together whenever we want. Dad and Steve built the barn together over a period of a year. I will always have those memories and funny stories to tell as well.

We have lived together for almost 5 years now, and I am so glad to have them here with us. The other children do not visit often, some never. Of course now through this most recent change, everyone of them is calling to see how Dad is, and I sometimes get very bitter and angry. I want to say, where have you been for the past 10 years, when they were in trouble. I am blessed to have Steve, as not many men would have the in-laws move in, but he is great. He would do anything for them, actually more than thier own children. He has been very supportive to me, and is here when I need to vent or just unload and cry.

Well I don't want to bore you anymore, I just wanted to give you some background.
Dad is about the same, no real change. We are just waiting for the results to come back and then move on from there. I will let you know as soon as we hear something.

Again, Thanks for Being A Friend in this difficult time.

Luv Lisa

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

Hi Lisa Ann- my heart goes out to you and your dad.  Your post  brings back memories for me... it was at this time last year my Dad started not feeling well.  I also recall the day that he started to change drastically.  Those moments will be forever ingrained in my mind.

I am praying that his biopsy turns out the best possible way. 

You are doing so much to support him at this time.  It must be especially difficult if your mother is having health issues of her own.  I can sense in your posts your deep love for your family and that is the price we pay for love... it hurts so much more when our loved ones become ill.

Lisa the support you are showing your dear father is so valuable.  He is being comforted by it and there will come a time when you will take comfort in it as well.  I was only able to find this board after my Dad passed away, but it helped me to vent... to grieve... to rail... until my "voice" was spent and I was more peaceful for having honoured my feelings.

Brightest Blessings,

Missing U

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

The Brady Bunch indeed! That made me laugh!

But what a tough time that must have been, though. And to lose your biological mother and now have to deal with both of your parents being ill, it's just too much. It's wonderful that you're able to live with them - I live about 30 minutes from my mother and stayed with her 2-3 days a week when she was well; at the end, I stayed as much as possible and lived at her house. My sister is further away and can't get away from her job, so she wasn't there as often, which I didn't resent -- but now I resent her because it seems she doesn't feel the pain like I do, and she was just so ecstatic that my mother left us a little bit of money. I thought I could count on her for emotional support, but she's either in denial or just completely shallow. I'm the baby of the family and always did everything with my mother, so I was really hit hard. My stepfather, who was like a real father to me, died almost 5 years ago of lung cancer and my mother and I supported each other and grieved together and we thought we would go insane - I was also pregnant. My daughter gave me and my mother a new lease on life and we found a way to go on - but now my daughter's hurting and I'm hurting and I have no one to grieve with. Funny thing is, my biological father died exactly one week after my mother, of a rare brain cancer. I couldn't care less - I disowned him 20 years ago -but my sister seems more upset about that bastard than about my mother. He was a violent drunk who was nasty to my sister even to the end, and she put up with it.

You're not boring me at all, so I hope I don't bore you with these explicit family details. It sounds like you have such a special and deep relationship with your dad, and you're so lucky to have that, but it's not much consolation when you're faced with losing him, I know. I'm glad Steve's there to give you the support you need, even though your siblings aren't. My husband is great, too, though I've been angry at him from time to time because he can't REALLY understand what I'm going through, even though he loved my mother. He didn't grow up with her, live with her, know all the inside jokes, play Scrabble with her. And both of his parents are alive and well and sometimes I resent them for that, even though I know it's mean and irrational. It's just part of the grief - it comes out in anger in weird ways, and I'm not generally an angry person. I guess that's why this site is great for me - no one else can really get it, y'know?

Give your father a hug for me today -- and your mother too. I realize I sometimes used to take for granted that my loving family would always be together. But my stepfather, my dog and my mother were my only family besides my sister and my 90 year old grandmother, who's losing her mind since my mother died, so I try to treasure everyone - even my annoying sister!

I hope your dad's symptoms get better - thanks for letting me vent!

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

Hello  Again, Joyce

Your not boring me at all. I am here for you when you need to vent. I am just as angry as you most days, and I havent even lost my Dad..
My relationship with my Dad has always been special, at least on my end. It is hard to tell how he feels about me. Sometimes I think I disappointed him with choices that I made in my life, most of which I would agree were mistakes. However, I never once stopped loving him. Dad is not an easy person to talk to, and doesn't show emotion very well either. So needless to say, it is hard to read him. Even with this illness, he internalizes everything, so you never know how he truly feels.

Dad has a very Morbid sense of humor, so he makes jokes about everything. When he does talk to my Mom about dying and what his wishes are, he ends the conversation with a laugh. I guess thats a good way of dealing with it, but it is hard on us.
He is not a very spiritual person, so he does not speak of God and eternity at all. When your number is up, thats it, I lived a good life, and I am tired now.

He wants to be cremated, and we are okay with that. He asked Mom what she was going to do with his remains, and she said, I am going to put them right next to me in our bed so that you will always be beside me. He said " I don't beleive it, Even after I am gone, you won't let me rest in peace". There is a good possiblility that he will be buried on our property, so yesterday he says he picked out the spot. He said, bury my remains down next to the manure pile. Of course we would never do that, but thats what he does to us. Most people do not find him funny at all, but he gets the nurses laughing when he is in the hospital for tests or procedures. He makes us all laugh,and sometimes I think that is why am in denial most days. He doesn't give you the opportunity to be serious about anything.

I think for me that makes it difficult, as I want to tell him so many things, and tell him how much I Love him, and how my life will never be the same without him in it. I am not sure I will ever get the chance and that is weighing very heavy on my heart. I do not want him to leave this world not knowing how I truly feel. Today I was thinking that maybe the only way is to write it all down, and let him read it when I am not there with him. When, is the question?  How much time do I have with him? Do I have weeks, months?  I don't want him to give up living.These are all the things I worry about. I can't shut my mind down when its time to go to bed at night, I think about him 24/7. I listen all through the night, to see if he is up, is he watching his T.V., is he eating anything,  is he taking a bath,is he taking more pain meds, etc.

I see him everyday, but try to act as though everything is normal when I am around him. He doesn't want to be fussed over, or treated differently. I however, want to hold him, sit with him, talk to him, when he isn't sleeping. Then I feel as though I am taking time away from my Mother, time that she needs to be  with him. Everything is so damm difficult , nothing is easy in this situation.

Now of course we are still awaiting the results of the liver biopsy. Should I have any hope? The odds are against him so we are told be the Doctor's. He has no fight in him.
I take it one day at a time, or at least that is what I am trying to do. Again I too am sorry for venting, but I, like you, feel as though nobody truly understands what I am feeling. Below is a poem that I thought you might need to hear.


Love Can Never Die

One must go and one be left
The lonely road to tread
There comes a day when all must face
The path that lies ahead

Knowing that the best is over
With a loved one gone
There seems no point in going on

But time is kind, the passing years
Their balm of healing bring
And like a bird at winter's end
The heart begins to sing

We come at last to realize
Death breaks the earthly tie
But love survives when grief has passed
For LOVE CAN NEVER DIE

I am thinking of you often, and can't thank you enough for letting me talk things out.

-Lisa

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

Hi Missing You,

I once again thank you for your thoughtfulness, and you words of wisdom. You have traveled the road that I  too will soon travel. I do not know how much time I have left, with my Dad,  but with every passing day I am grateful that I had another.

Dad's Place


There's a special kind of feeling
When I think about you, Dad

It's a pleasure to remember
All the happy times we've had

There's a special kind of caring
That is meant for you alone

There's a place somewhere
Within my heart
That only you can own

I am glad I found this board the same day my Dad was diagnosed. I wouldnt no how else to get my feelings out. I can talk to Mom, but she has enough to deal with too.
As for the rest of my family (siblings), I just do not think they feel the same way. They kinda take the attitude that he is old and this is what happens. I do not feel he is old, I guess I thought he would be here forever. He was always so full of life until 4 weeks ago. He could still run circles around the younger generation, and would make that known.

As for your Dad, you must have had a special one also. I am sure he was so very proud  of you. Like so many here on this board, even after the loss of a loved one, you are still helping others get through these difficult times. For that I admire you and your courage. Do not ever stop being the special, giving person you are.

I will let you know the results of the biopsy as soon as we get the word. I am hoping tomorrow or Friday.

Bright Blessings to You,
Lisa

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

Hi Lisa Ann- I was drawn to your post intially because your story seemed so similar to mine.  My wonderful Dad was only 69 when diagnosed.

He was so healthy all of his life... in August of last year he and I were building a fence at my house... in fact my Dad, myself, his friend and a neighbour built three fences.  I secretly told the neighbour not to let my Dad do too much because he would end up doing everything.  My Dad was just like that, he loved to work.

This time of year is a little sad for me because it is when he started complaining.  He had pain in his legs.  He ended up going to a walk in clinic, they took blood and gave him a prescription for a Tylenol 3 type of medication.

A few days later the clinic called and said he should see his family doctor, that the blood work showed an inflammation in his blood. We never anticipated anything more than arthritis, or rheumatism... he was 69 and pain would not be unusual.  The doctor sent him for x-rays and the next day called my mom and scheduled a pelvic ultra sound as well as a bone scan. 

My mom called me at work in a panic. I called the doctor's office to find out why they were sending him for these tests.  The receptionist read the x-ray report to me saying that they found extensive metastasis to the bone and the suspected primary was prostate cancer.  Lisa Ann... I was in shock.  They aren't supposed to release information like that, but she did and all I could think of is if my Dad has cancer that has spread, he has no other option.

I shut my door and started crying... I am an only child, always had a close relationship with my parents and my Dad was and is my hero.  I couldn't believe this... the unfairness of it, it was like being struck by lightning.  My Dad was not only my hero, he was an amazing man... was kind, gentle, hard working, respectful, positive, he was and is my greatest teacher.  I was so afraid of losing him.

The journey for him was not a long one.  I was with him during the bone scan and saw white all over his images.  I asked the technician if we could know the results then and she said she'd ask the doctor to speak with us. By the end of the scan she said she'd forgotten the doctor had a lunch time conference call. When we left, she squeezed my arm and told me to have a nice weekend... I'll never forget the look of sadness on her face.  Still, I pushed it away.

The moment I realized my Dad was sick I packed my things and moved in with my parents. I live in my own home a half an hour away, but I knew they'd need me.  I am still with my mom as she's had a very difficult time. I pop into my house often to check in, but do not have the heart to leave my mom yet.  It's painful for me to sell my house because my Dad and I did so many things in it together... I had it built and every weekend my parents and I would see its progress. Every picture was hung by my Dad... he was looking forward to finishing my basement. Now it's so difficult to be in my basement, see my Dad's tools there and know that he isn't with us.

This was a Friday- the bone scan... we waited all weekend and had an appt. on a Tuesday.  The results of the scan were not in and we waited as the doctor contacted the hospital. She came back in with the results and the look on her face said it all. English is not my Dad's first language, so I was there to translate. Lisa Ann, the words stuck in my throat as I had to be the one to tell my Dad he had cancer.  He put his hand on my knee and told me not to worry, he'd be ok. I was crying, and he was comforting me... imagine that.  At that time I felt more like a 3 year old, not a 39 year old.

He deteriorated very quickly... was in so much discomfort because he developed ascites. Went into the hospital one day because he was vomitting so much we were afraid he was dehydrated.  They ended up giving him IV fluids and he needed a transfusion. His haemoglobin was so low, he could have had a heart attack.

They kept him for almost two weeks trying to find the primary.  He went home and a week and a half later had to come in again for the same thing.  This time they kept him in and he never left. They discovered he had CC, a Klatskin tumor that metastasized to his bones... very rare and rarer still that it went to his bones.  I was able to get a consult with a leading oncologist who works in Canada/ US and he had some options for my Dad, but the outlook was grim.

Lisa Ann, the last two weeks of my Dad's life, my mom and I never left his side.  It was heartbreaking watching his life slip away from him day by day.  There was a day when there was a noticeable and drastic change in his appearance, and I knew the end was near.  He passed away with my mom and I at his side, holding his hand.  At that time I felt relief for him because his suffering was great. He was on medication that we were told was 40 times stronger than morphine. Yet, he was lucid up until the day before he died.  His voice was barely a whisper, but he still managed to tell us he loved us.

It has been eight months now since he has been gone.  There are good days and there are bad days.  I've only started to post again on this site because I found the stories too difficult to respond to... it was like living it all over again.  Your post reminded me so much of my experience and when you initially spoke of your dad's pain, I wanted to share my experience, because I didn't want your dad to suffer like mine did.  The doctors told us that with the cancer my Dad had in his bones, they marvelled that he didn't complain... in reality, he must have been in extreme discomfort, but he never let on.

We can only speak from our own experience. I sometimes wish that for my Dad, that he would have had an instant death so that he wouldn't have to suffer. However, an instant death means that the individual and the family has no preparation.

There are still those heart wrenching days that I don't know how I will make it through. I've learned that you can cry enough tears that your eyelids will actually peel. I've learned that your mind and heart can be so heavy that the rest of your body stays still and you can actually forget to eat. I've learned that you can become so exhausted and spent at life that you can actually get past the point of being tired, and consequently, sleep never comes. I've learned that if you rely too strongly on any one thing without believing in your own power to heal and in your own heart, that the healing you do might be shallow and you might find yourself back to the beginning of your difficult journey.

I have also learned that although my Dad is not with me in the same way, his blood runs through my veins. That means that if I am quiet long enough, I can actually hear him whisper the wise words he always had for me. If I don't wish too strongly to see him, I can actually take notice that we are actually quite similar in appearance... those hands of his that represented strength, hard work, and honesty are actually my hands, only mine are smaller. That smile that was always ready to turn into a laugh is actually my smile, when I let my self go and laugh a little. The crinkles that were always punctuating his beautiful sea grey eyes are actually the same type of crinkles that appear beside my own earth brown eyes. The same crinkles that I wear proudly, not hiding them under make up, or making them disappear with cream, because I know that into their making went many stories, much laughter, and boundless happiness.

What brings me back to that "place" of peace that is present sometimes is remembering my Dad. I have his picture in my locket because wherever I go, I can look at his photo and that brings me comfort. I had a ring made with our family name on it so that on the days when I forget who I am, I can look down and see exactly who I am and where I came from... that gives me strength. At work I have photos of my Dad... I have a very stressful job that at one point would cause me much anxiety and now I have a different view- everything in my life that had caused me stress once before pales in comparison to what happened to my Dad- so his pictures at work bring me perspective.

His illness taught me unconditional love. His quick and painful journey to the end of his days taught me grace and courage. His attempt to fight and his surrender taught me dignity. His life taught me love and his death taught me life.

Those last few weeks of my Dad's life were so painful as I watched him slip away, but I can honestly tell you that they were the most sacred moments I have also experienced. Being with my Dad in his moment. I am honoured to have been holding his hand at that time. I imagined that I was  holding his hand just until another loved one was ready to take it on the other side.

I wish your dear father, your mom and you peace and comfort.

Missing U

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

Missing U,

I am writing to you now, with tears streaming down my face. Your Dad sounds just like mine. He and my Mom were also here through the building of the house we now call home and my Dad and husband built the barn. I used to think that I would always have a piece of his work here with me forever and I will. I never once imagined that it would be this soon. There is too much I still want to do with him and so much I need to say to him, that I am lost and do not no were to start.

I will continue writing to you later this evening, when I collect myself and my thoughts.

Lisa

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

Dad's Liver Biopsy results came back yesterday, although we are told they are still waiting on some tests. It is now confirmed that it is CC with total liver involvement.
The last couple days have been very depressing here for both Mom and I. We are watching this disease take more life out of Dad everyday. Mom is losing a husband and I my Father.

He is weakening before our eyes, losing more weight, and has lost his appetite for just about everything. Things that he always drank and ate, no longer appeal to him.Most days his daily intake consists of jello, water ice, and maybe some applesauce. He seems to be vomiting more frequently, and sleeping much more. We are so worried, how long can he continue to live like this. Is it a normal part of this disease to lose taste for everything that was once an everday thing, like hot coffee, toast, etc.?

He is scheduled to meet with the gastroenterologist this Thursday,I suppose to discuss the biopsy results. Mom got the resuts from his Primary Physician. It was also recommended by him to meet with an Oncologist to try and at least combat the symptoms. He continues to complain of pain, and just says he feels yucky.

Still have so many questions about the progression of this disease, and Mom and I are so very frustrated.

Lisa

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

Lisa Ann- I am so sorry to hear that CC was confirmed.  I remember when we finally found out what the primary was and I had actually researched cancers with the best outcomes and was hoping for one of them. 

My Dad's appetite was severely affected as well.  For a few weeks he had no appetite. He was always a healthy eater and enjoyed everything.  Eventually he was not able to eat very much because of abdominal discomfort. Then he began vomitting most things he consumed. 

This particular symptom was heartbreaking for me and my mother.  No one had the heart  to eat because my Dad was having a hard time.  He would have a small bite of toast with a little herbal tea and minutes later it was gone.  When he'd get up to use the washroom, I remember peaking my ears to hear if he was throwing up... when he didn't, I'd say a prayer of gratitude.

Cancer apparently attacks the body's protein, that's why there is often weight loss. It is a double injustice for this cancer because the individual really cannot eat anything and that at least would help them keep their strength.

My Dad was very sick around the holidays and I found it especially difficult having visitors talking about the feasts they were preparing while we knew my Dad could not have anything.  It was heartbreaking, to be honest. I'd cry on my own because of these unintentional insensitivities. 

Still, I'd buy foods for my Dad like Ensure, so he could have some nourishment, I'd buy organic things and the sort so the foods wouldn't harm him.  He and I had the same appetite for spicy foods and it broke my heart when all he could have was bland foods so it wouldn't upset his stomach.  Our society places so much emphasis on food... it's also life sustaining and represents so many other things... when the ability to eat is threatened it does so much more than just physiologically deplete us.

For me, I always was close with my parents and made sure to make memories... however, since we discovered my Dad was ill, I hung onto every moment.  I memorized every line on his face, tried to remember each word we were speaking to each other.  When he was still home he was so uncomfortable and would lie in bed hours upon hours.  I would imagine how alone he felt in his illness.  Still, it was his wish.  I was always a sound sleeper, but I turned into a light sleeper since those days... waking up when I heard my Dad.  Sometimes he'd get up and sit on the couch for a few minutes.  I'd get up as well to keep him company, knowing that those few minutes were a precious commodity.

Lisa Ann, my advice at this point is to hang onto and savour those moments with your precious father. I am praying for your dad, you and your mom.  May the doctor's hands be divinely guided to help him in the best possible way.


Peace and Comfort,

Missing U

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

Missing U,

Again, I need to thank you for sharing your story with me.I know how painful it must be to re-live the last months of your Dad's life. It is comforting to me, because your story does sound much like mine, so therfore I know we are not alone.

Dad is not doing well at all. Every little bit of food he gets in is now coming back to haunt him. On top of all this, he is now having a bout with his gout, which is very very painful. It has attacked his ankle, so now he can only walk from the bedroom to the living room with a walker. He is absolutley miserable. Today alone he has vomited 4 times, and all he took in was a jello. He keeps saying that he cannot even look at food anymore, it makes him sick. He has slept most of today with the exception of only a few hours.

Mom and I feel so helpless because there is nothing we can do. It is a waiting game with the Doctor's. He does not have his next appointment with the gastroenterologist until late Thursday. I am affraid it is all taking to long, waiting for the next step and he just keeps slipping away day by day.How much more is he expected to take.
He is not jaundiced and his abdomen is normal size. I am concerned about what is going on that we don't know about. He doesn't want to take his meds anymore because he says they are not doing anything. Mom trys and trys, but he gets angry.
We have run out of ideas as to what to offer him, and I know he is not taking in enough fluids either. How long could this possibly go on and how far advanced is the disease already, is the question we keep asking  ourselves.

I will keep you updated as much as I can.

Stay Special,
Lisa

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

Oh Lisa, I'm so sorry to hear things are progressing so badly. Right now I think your main objective is to keep your dad as comfortable as possible, and the doctors aren't helping you. Maybe you can give him some ice chips so he doesn't become dehydrated - all that vomiting and no food intake will do that, and I'm sure he doesn't want to be hospitalized at this point.

I know your father has objections to this, but the only advice I can give is based on my personal experience: my mother was hospitalized for shortness of breath, anemia and dehydration after her 2nd chemo, 3 weeks before she died. The chemo was causing a lot of these symptoms, but the disease and infection were culprits too. My mother had a very proud and independent spirit like your dad, I think, and she became incredibly miserable and depressed while they kept her in that horrible hospital for a week, running tests, ignoring her, treating her like a child. She absolutely HATED being in the hospital. THe worst thing was that they didn't want her to get up to go to the bathroom for fear she'd fall, so they demanded she use a bedpan - this was a horrible indignity to her, as she could still get around a bit and she was humiliated that they made her do this. Her spirits got worse and worse, until I finally did a jailbreak - I just told them I was taking my mother home NOW and I called hospice to meet us at home so they could make sure she got all the meds she needed. She did NOT want hospice, but I explained that hospice doesn't mean you're going to die right away, it just means you refuse to do chemo - because oncologists won't have anything to do with you if you refuse chemo, so you have no other option. She was so fatigued and depressed that she just let me take over, and I think she really needed that --- someone to tell her what to do, firmly and logically, and take the burden from her. It was the best thing I've ever done, because my mom got to spend the last 2 weeks of her life at her own house, with visitors and loved ones around 24/7 -- she was ordering us around like her old self, finally back in her own territory where she was queen. Hospice provided us with oxy for pain, and then morphine when pain got worse, and 4 kinds of nausea medications. They advised us on everything and told us that if her condition worsened, we should call them and NOT 911, or she'd be sent back to the hospital. Hospice is all about AVOIDING THE HOSPITAL. I get the feeling that your father is also someone who would want to be at home, surrounded by his loved ones, rather than suffering neglect in an impersonal institution.  I urge you to think about it and/or bring it up to him. It's sooo hard to do - I know -- but saying your good-byes at home or at a hospice organization is so much more comforting for everyone. On the other hand, some people really feel comforted knowing they're at a hospital with trained staff to take care of them. But you can get nurse's aids for a few hours a day from hospice, too.

I'm not saying your dad is leaving this earth soon -- but hospice will see about alleviating his symptoms and they won't make you wait for 4 days!! The medical establishment is so insensitive and time is of the essence if your father is feeling that poorly. My heart breaks for you and your family ---- please know that we're all with you in spirit and feeling your pain.

One last semi-sweet note: the night before she died, my mother had to go to the bathroom and my sister got out the bedpan, and my mother said, "NO!" so we heaved her up and she managed to walk to the bathroom on her own, do what she had to do, and walk back to bed with minimal help. She beat them - she did it her own way and she wasn't going to use a lousy bedpan, no matter what! This small thing makes me so proud of her -- I know it's ridiculous but to me it's an example of what a proud and courageous woman she was

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

Hi Joyce- it's good to see you post.  I've been away from the board for a while and have just started posting again. I've been reading off and on but it has been so difficult reading the stories and recalling my own experience.  Thought about you often as I went through my ups and downs of grieving for my precious Dad. 

I guess this illness bonds all of us in a way... our stories are different, our loved ones are of all ages, their symptoms are somewhat different, but we are united in our loss.  We are united in our feelings of helplessness and injustice.  We then become united in our desire to spare others what we went through, or to help them with our experiences.

I know this is Lisa's thread, but I wanted to say hello and that I've been thinking of you and wishing you were doing well. Your responses to my posts what seems like ions ago were so validating that they helped immensely just being able to rail at the fates for having so unkindly stolen my Dad.

Brightest Blessings,

Missing U

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

Joyce and Missing U,

Well we finally got an appointment with the oncologist for this coming Friday afternoon.
I am hoping that possibly she can help get some of his symptoms under better control.
As of today, I think Dad looks a little jaundiced, but hard to tell without him seeing me staring at him. He told Mom today, that he only has 2 weeks left to live.

I got to spend some of his awake time with him today, and it made me feel good.Today was a better day than the last few, although I know he is hiding it from me. He did not vomit today and actually ate some chicken noodle soup. We are running out of things to offer him, he has lost his taste for everything.

I am studying all the lines on his face, his hair, his smile and laugh, his smell, etc. As much as I know that I am going to lose him, I am still somewhat living in denial, for  thats what gets me to the next day.

I thank the both of you for helping me deal with everything that is going on, it really is great to know that I can share my feelings with someone other than my Mom. I hate to burden her with my sadness, when she has so much of her own. We both Love him dearly, but in different ways. A wife's love is different than a Daughters love, but we both love him unconditionally.

Mom and I were laughing on Saturday talking about some of the traits I have acquired from him. I have his hands, only smaller. I have his chin, only smaller. I have his spending habits. I have his love for animals. I sooooo have his bull headed ways, and alot of his strength. I will always have those, and nothing will ever change that.

I can only hope for a good day tomorrow, as that is what keeps me going. I do treasure every minute that I have with him, I love him so much.

Thanks for being here,
Lisa

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

Lisa and Missing U,

It's so sad that it takes this horrible disease for me to connect with such lovely people as the two of you - and others on this board. Missing U, I've thought of you often, too, and I hope you're doing okay -- as okay as you can do, after such a terrible loss. I just passed the 8 month mark and it still feels like yesterday sometimes.

Lisa - I don't know if I should tell you this because it may just be pure coincidence, but my mother told her friend that she had 2 weeks to live -- and she died exactly 2 weeks later. I don't know how she came up with that timeline, how she could have known, but just in case, prepare yourself that your father may know something deep inside that no one else could know. I hope you have plenty of more time - QUALITY time - with him.

Good luck at the dr. and keep us posted on what happens. My thoughts are with you-
Joyce

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

Hi Joyce,

I agree that my Dad may know something deep down inside that we are unable to understand. I am trying everyday to accept that I am going to lose him, however, I can't. As much as I know that there is little hope or treatment options available to him, I still cannot imagine life without him. How can I really prepare myself, when I am having such a difficult time letting go.

I know everyday when Mom and I try to get him to eat the little that we do, we are not feeding him, we are feeding the cancer. The cancer is taking everything to survive and leaving Dad with nothing, It is also the bodies way of preparing to shut down. I keep hoping that it will turn around some and give us more time with him, yet I do not want him too suffer. The appointment with the oncologist is going to be disappointing, and that I am also preparing for. What can they really do if he is not a canidate for anything. Mom and I talked about Hospice and how we would tell him, so that may really be our only option after this weeks Doctor's appointments.

Steve does not talk about it much. I think it hurts him to see me so unhappy and upset, and he just doesn't know what to say to me. Realistically, I guess there is nothing anyone can say. It is part of life and we all must let go someday. Why can't I just accept that. Mom talks to me about what his wishes are at the end, there will just be a viewing, and then he will be cremated. It looks as though his remains will be buried here on the property, and Mom says when its her time, she wants to be right there beside him. I somehow find that comforting, that they will be both here for me to watch over, and visit whenever I like. And if my time here is up before Mom's, I want to be next to him as well.

I will let you know the outcome of the Doctor's appointments this week and keep you updated on how he is doing.

Thanks for Being Here,

Lisa