Thank you both for the suggestions.  I was hoping it was just him being in the chair too much.  I want it to be anything but the cancer progressing.  I am always hoping that I can make some modifcation that somehow he will feel just a little bit better.  I don't even wish for him to get better anymore, I just wish he would stop getting worse.  This is a ruthless cruel disease that daily tortures my Dad and there is really nothing I can do about it. 

I don't want to sound ungrateful for the information because I consider this website and people like you who offer information and support to be a resouce for me and my family, so again thank you for taking the time to reply.

God bless.

My Dad was diagnosed with this type of cancer in October of 2006.  He has the type that is worse of the two (intrahepa or extrahepa.  I can't remember which one but it is)  He cannot be operated on becase it is on both lobes of his liver.  He has decided not to do Chemo or Radiation and has chosen quality instead of quantity of life. (Despite my wishes)

The problem is that his quality of life is quickly decreasing.  My Dad has had pain steming from his lower back by his shoulder blade and it comes around the side and to the front.  But the back pain is really troubling him.  He has been taking hydrocodone but it makes him almost sedatedall day and then up all night.  We tried lowering the dose and switching to Darvocet but nothing seems to kill the pain without making him sleep all day.  Does anyone know why he is getting this pain and if it is related to the cancer.  I am hoping this is only due to him sitting in a recliner for long periods of time.  Can anyone suggest a medication that will help with the pain but not put him to sleep?

In addition, he has also completely lost his appetitie.  He will only drink ensure once a day, if that.  He has down to 139 lbs and is very week.  I researched a drug called Megace and asked the doctor for it but he said he would only give prescribe it to my Dad if he comes in for a visit.  The problem is he is not strong enough to go to the doctor.  He hasn't seen a doctor since May.  I have been looking into hospice but I am not sure that this is what he wants.  He rarely complains so I don't know the real severity of everything.  I try to discuss it with him but he says that the topic must be boring and he changes the subject.  Has anyone tried Megace or have any other suggestions?

Thanks for reading this. 

May God grant you the strength to endure this terrible disease.

Fathers Daughter

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(9 replies, posted in Introductions!)

Dear Jeff G.

Your words help me so much in understanding my Dad.  He has touched about every single thing you mentioned.  The idea of this disease holding the family hostage and sucking up all the money for medical expenses and pressing on with our daily lives.  When he said those things, I interpreted them as he was giving up and wasn't willing to fight to live.  It frustrated me because I wanted to tell him that if he didn't want to fight for himself then to please try to fight for me because I am not ready to lose him yet. 

But I think I understand,  since I have found out that he has this disease,  it has consumed everything.  It is all I think about, study on the internet, talk about and worry about.  This disease has in a way held us hostage.  I haven't talked to my Dad about anything BUT this disease.  In fact one day last week, I called him three times in an hour because of new facts I found out about on the internet.  He told me that his head was swimming and he didn't want to think about it anymore that day.  It hurt my feelings because I wanted him to know everything there was to know.  Like if we knew more about the disease than maybe we could somehow cure it.  I even studied his MRI CT scans looking for, I don't know what.


This is a horrible disease but I am not going to let it hold us hostage.  I have decided to leave the medical stuff to the doctors and just enjoy having him here with me today.  Like you said, I don't know if he will be here tomorrow or in another three months but I have him today and I am grateful.  If he changes his mind and gives treatment a whirl, I will gladly take him but until then I am going to stop hovering. 

Thanks again for helping me unnderstand this better.  Your kids are blessed to have you help them as their Dad and I am grateful that you gave me some Dad advice too.  I so hope that you celebrate your 32 Wedding Anniversary and the 40th too for that matter. 

Blessings to you and your family.

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(9 replies, posted in Introductions!)

I am sorry to hear about your Dad.  You were with him through it all and I am sure he was grateful to have you by his side.  He knew how much you loved him.  I hope you can find some comfort in that. 

I am taking your advice to try to just be there for my Dad as well.  Unfortunately, he said he feels like his health is all we talk about anymore and he says he is boring everyone.  He has also made the decsion to forgo all treatment.  I think it is because he feels like he is a burden or maybe he is just scared, I don't know.  He won't talk about it to me anymore.  He doesn't want me to even take him to the doctor anymore. 

I actually liked the idea of taking him to doctor daily because selfishly I could spend more time with him without looking like I was hovering over him.  I don't know if he needs to mentally sort things out so I am trying to just give him the same respect I gave him when he was healthy by respecting his decision but I know I will lose him sooner without treatment.  It makes me panicked and helpless.  I pray he will change his mind.

I know it wouldn't be fair for God to let me keep my Dad forever when the rest of the world has to lose thiers but it doesn't stop me from asking Him for more time.   Especially after reading your Easter post, I know that I need to just be grateful that I have him now.   It's just so hard to feel grateful when the feeling of fear and sadness is so much stronger. I am so happy to be able to spend this Easter with him and yet I am so sad because all I can think about iis that this is probably the last Easter I will spend with him.   Then I geel guilty for being so ungrateful for the time I do have.  I guess I have some things to sort out myself. 

Thanks for your advice.

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(8 replies, posted in Introductions!)

Thanks Chris,

This will help very much.  I am going to give this information to my Dad and hopefully we can get in to see him next week.

Thanks again!

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(8 replies, posted in Introductions!)

Hi Chris,

Things have been really chaotic lately...

The doctors are recommending a second opinion.  They have suggested he go to Ca.  They want to give a referral for a doctor but I don't know of any yet.  I know you said you liked Dr. Lentz but I can't find out anything on Dr. Lentz.  Do you have his first name?  Can you recommend any other good doctors out there? 

Thanks again for your help.

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(8 replies, posted in Introductions!)

Thanks Chris for the information.  I am so sorry to hear about your loss, especially since it just happened.  You said he was a great role model and lived a good happy life and that he had peace in the end.  I bet my Dad and your Step Dad would have alot in common.  My Dad is a pretty good guy too.   That is my hope - peace in the end.  Although I can't even bear the thought right now.   My Dad and I are so close, I can't imagine him not being here. 
I just dropped him off back home after a consultation with the radiologist.  He has a intraheptic tumor in the helium of his liver.   We live in NV but he went to Northwestern to get surgury but was told he was not a candidate becuase it was in both lobes or nodes ( not sure which one)  and that there wouldn't be enough of his liver left to survive.  I am getting the impression that the cancer began in the entry way of his liver and shot through to the other side and now is like a candle burning at both ends.  The doctor here told him he has three options do nothing and maybe he will make it 6 months, have radiation and be sick for 5 weeks and maybe make it a few more months or chemo and radiaition which will make him sick for 3 - 4 months and maybe he would make it a year.  My Dad feels that the risk may not be worth the reward.  Meaning that why be so sick for so long when he is not going to beat it anyway or even gain that much more time.  He is thinking that if he isn't really sick yet maybe he should do nothing.  The doctors in Chicago told him to have radiation.  Can you tell me about radiation.  I have read so much, it is overwhelming.  I read he would get sick from it but that there is medicine that would make him feel better.  The doctor here told him that he would be vomiting and nausiated for the duration but another doctor said that nobody gets that sick anymore.  I know everyone is different but how can anyone make a decision when there is not a definative idea of an outcome? 
I know you said it was a rollercoaster for your family.  I hope it is okay for me to ask you whcih type he had the intraheptic or extraheptic. I guess the one my Dad has is much worse than the extraheptic. 
You are right though, I am so overwehlmed by everything but mostly I am afraid because I don't know what is going on nor what to expect.  I know he needs to make a decision about treatment soon and I have not an idea what he should do.  Anything you can offer would be really helpful.  Thanks,

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(8 replies, posted in Introductions!)

Hi Chris,
My Dad was just diagnosed with this type of cancer.  I know nothing about this type of cancer or really any type of cancer for that matter.  How do I know how sick he is.  The doctos say he is probably a stage 3.  It is in both his lobes or nodes of his liver.  He has a stent now but they say he needs a metal one soon.  He was hospitalized with jaundice and really high cholestrol.  I think it was something like 350 and they didn't know what was wrong with him.  He says he is "sluggish".  He doesn't want to compalin so I don't really know how he feels.  I am really scared and feel like I am going to lose him soon.  We met with an ongologist yesterday and he wants to start radiation.  I don't even know how or what that will mean.  Can you tell me where to start?  Anything you can offer would be great.  Thanks

My Dad was just diagnosed with this type of cancer.  It is so unfamiliar to me, I don't even know what questions to ask. 
They told him it was in both of his lobes or nodes of his liver and believe he is stage 3.  Some say he should have radiation and chemo and other doctors say chemo won't help. 
I have researched this alot on the internet but the internet tells me that most peolpe won't survive 1/2 year with this type of cancer.    He was hospitalized with jaundice and they put a stent in him four months ago so I feel like the clock is ticking.  I am so afraid when I say goodbye to him that I may not see him again.  I don't know how to be specific about what I am asking of anyone who reads this but I would be grateful for any information I can get.

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(14 replies, posted in Introductions!)

My Dad was just diagnosed with this type of cancer.  I am scared for him and don't know what to expect.  Information on the internet makes me more nervous.  The doctors are divided on what treatment  he should receive.  From what I can tell, I think he is in stage 3.  It is in both of his lobes or nodes, which makes me think he will get sicker twice as fast.  Absolutely any information would be dearly appreciated.  Thanks