I think I'm at the end of my rope

csweens · Regular Joined: 02 Apr 2007 Posts: 29

Hi Everyone -
I've just spent an hour or so reading post after post about loved ones and their liver cancers - I so don't feel as alone as I did before I found this site and I thank everyone who posts - I've never had such a hard time in my life -
My father (will be 81 in August) was diagnosed in early February 07 with liver cancer that metastisized from his colon - the colon cancer was taken out once in 1992 and then again in 1997 - he is still clear from that.

He has a 9cm tumor that evidently covers the left and right side of his liver - they found it because he turned yellow and ended up in the hospital = they put stinks in to drain the bile but i'm told it's a temporary fix - surgery is out, they've classified it as stage iv and have told us chemo is pallative (a word I never heard of before) care at best.

The thing I think that has me the most frustrated is that he was diagnosed on 2/12/07 and has yet to receive his first chemo treatment - the doctors can't get together right to put some cathcap in him - which is finally happening on Wednesady of this week. I am an only child - I'm really scared - I've stepped into the roll of confirming his appointments - something I should have done sooner and maybe he'd of had a treatment by now.

My worry now is it doesn't seem to be an emergency to any of the doctors involved - is this an exercise in futility? Are they just doing this to appease us - will this even prolong his life - they wouldn't give us a time frame as far as what time he has left but I have noticed that he sleeps alot more than he did - couple naps a day my mom says - I've tried to get to see him and my mom (they've been together 60 years - I'm sooo worried about her too) but mom doesn't want things to be "different" - I keep telling her things are "different" - nothing will ever be the same - I just can't stand the unknown, the waiting, the if's......how do you all do it? I've never had anything remotely like the pain I already feel - I'm a single mom so I'm trying to balance work, home, and running to see him - I keep myself together at home (have a 12 year old son), at their house, and then when I get to work I fall apart - I'm starting to have little fits of anger here and there that I never did before - I feel like my world is falling apart -
Any advice would be greatly appreciated - I try to live today and not worry about tomorrow but how do you stop those feelings from crashing in on you?
Cindy

MicheleBurnside · New User Joined: 21 Feb 2007 Posts: 8 Location: Irvine,CA.

CIndy,
I'm so sorry to hear about your father. It is a horrible thing to go through. I have a brother & a sister, but neither are involved in our family at all so I am really an only child. You think you'r at the end of your rope , but you aren't you are stronger than you think. You have to be for your father. I think my situation was similar to you except my mother was controlling and she wouldn't allow me to visit my father unless she said so. Once he was diagnosed and she saw how much work it was and hard it was for her to care for him she started to ease up on the control and I literally pushed my way in and never left. Thank God MY dad needed me and I couldn't ahve lived with myself if I wouldn't have. You need to do the same. You are right to tellyour mother that things are different. They are different. Spend as much time as you can with your father because you don't know how long you have. I was first told 6 months. then 3 months, then he should have died 2 months ago. All from the same doctor. What I'm trying to say is even if they give you a time (which is just a guess) It really doesn't mean anything. They aren't God. Spend as much time as you can with your father, You don't want any regrets.
_________________
Daughter of Kenny, who passed away March 28,'07 4 months after diagnosis (NSCLC IV with metastasis throughout entire body, except brain)

Still Keeping Faith · Regular Joined: 15 Jan 2007 Posts: 14 Location: California

Hi Cindy,

I am so sorry to hear about your father and about what you're going through. I've been there so I certainly understand and feel for what you're going through. We just lost my father to primary liver cancer on 3/16/07 and he was diagnosed on 11/6/06. Since the time of his diagnosis, it's been extremely frustrating talking to doctors, waiting for consultations and appointments and pending treatments and more endless waiting, not to mention constant haggling with the health insurance for authorizations. I was also the one (of 3 daughters) designated to schedule, coordinate, communicate, and take my dad on most major appointments, including spending endless hours on the phone trying to convince doctors to expedite treatment. It got to a point where I had every doctor and every medical agency affiliated with my dad on my cell phone's speed dial. I went through moments where I was so frustrated and overwhelmed that I did end up being snappy to others around me and I also broke down (sometimes without any warning).

Having a loved one be inflicted with liver cancer is devastating enough, but having to fight a system of bureacracy just so one can get treatment to save someone's life is even more than one can bear..........it literally is a race against time. My dad was a fighter and we fought all the way, but in the end, his body was shutting down and the pneumonia took him. It was a miracle that he survived as long as he did considering the enormous size of his tumor (19 cm) and I did everything I could and spent as much time as I could with my father. Now that he is gone, I am certainly grateful that I made the most of my time with him and left nothing undone or unsaid. In the end, there is great sadness, but there is also peace and comfort in knowing that I had time with my dad (even though it wasn't the extended time that we'd like). So my advice is to spend less time worrying about things that are not within your control and do focus and prioritize on what time you do have with your father and just be there with him.....................that certainly helped me. Take care!

Still Keeping Faith

csweens · Regular Joined: 02 Apr 2007 Posts: 29

Thank you both for your kind reply and advice - I'm sorry to hear of your losses and I really appreciate knowing that I'm not alone - it sure feels that way some times - I'm really glad to have found this site - in reading the posts I find some peace but also some more worries about what is coming next - the frustration is more than I ever thought it would be - I work in a hospital so I should understand how long things take - it's endless sometimes - guess I've learned a lesson on how the patients/famlies really feel - thought I knew but not even close.
Thanks for your advice about spending more time - I do have some control issues in my life not related to my Dad's illness but they are rearing their ugly head now even more than ever - I'm working hard on them, fortunately my family at home have put up with my rants and raves - when my 12 year old is not around -
I'm spending as much time as I can with him - infact we are in the hospital right now waiting for him to have his portacath in so he can start chemo on Monday -
Thanks for listening and sharing with me.
Cindy

THE 1 · Posted: Sat Apr 07, 2007 8:27 am Post subject: .......have seen better days.

Cindy, i can tell what you've been goin through lately.. but just as you mentioned, you're not alone... We're all either going through this horrible phase in life or have already gone through it.

My mom's case is a secondary hepatocellular carcinoma, a tumor, which when diagnosed was 17cm. I searched for all cancer treatment facilities in the GCC, then in my own country but none were ready to give her any treatment. Fortunately, i managed to fly her over to Singapore where they've managed to treat her tumor to a major extent such that 70% of her liver cancer cells are dead (tumor necrosis)... Her pain has subsided but she's lost all weight (around 30 pounds)... Unfortunately, some of her cancer has spread outside the liver over to the lymph nodes which cannot be controlled. The doctors have tried different combinations of chemotherapy drugs on her, unfortunately the cancer is still spreading. Now we've found this new medicine named "Sorafenib" which has some clinical studies proving it can somewhat negate liver cancer if not cure it completely, we're hoping this'll work on her...

I've gone through a lot in the past 5 months, my work's been screwed up big time, medical expenses are overwhelming and i'm still living at the edge, hoping to God that someday he'll reward me with my mom's health against all my efforts...... miracles [i]do[/i] happen, i don't wanna lose my mom, she's only 52. I'll pray for ur dad, u pray for my mom.

Regards,

H.Q.
_________________
if GOD brings you to it, HE alone will bring you through it.

csweens · Regular Joined: 02 Apr 2007 Posts: 29

Hi H.Q. -
Thank you so much for your understanding - I'm sorry to hear what you've had to go through with your mom - I will definately pray for her as you pray for my dad -
My Dad had his first chemo yesterday - went very well - I went with him and my Mom while my "brother" and his family waited to leave (yeah!) by taxi to the airport - he actually had the nerve to ask my Dad what funeral home he wanted to use while he was up here - I'm not a violent person but I wanted to punch him in the mouth sooo hard I couldn't stand it - not that we don't need to have that conversation but not now, and my brother certainly won't be around to take care of that part of things - it'll be my mom and I - I'm calling us the three muskateers - together through it all -

I will pray that this new treatment will be successful for your mom - you're in my thoughts and prayers -
Thanks again for listening -
Cindy

MicheleBurnside · New User Joined: 21 Feb 2007 Posts: 8 Location: Irvine,CA.

Hi! I've been reading both of your posts. I have both your father and your mother in my prayers. I sure hope the potential cure for the liver cancer prevails. THAT WOULD BE AN AMAZING MIRACLE we could all use one. I wish something could have saved my dad, but it was too late. I too went through so much with doctors, insurance companies, medicare (the biggest bureacrecy of them all) I may times had 5 different phones going at the same time. Both my and my husbands cell phones, my daughters, our home phone and a business line. I was trying to choreograph all the conversations instructing everyone on which questions I wanted asked and what I needed done. The very most frustrating was dealing with the nurses who were administering the medications to my dad. If I could have jumped through the phone and strangled a few of them I would have. It was so very hard to not be there 24/7, but I just couldn't physically, but I really never was anywhere else except physically. (Very strange how that works) Spend as much time as you can with your father and mother even if it means putting the phone down. I will be praying for your mother and father.
Michele
_________________
Daughter of Kenny, who passed away March 28,'07 4 months after diagnosis (NSCLC IV with metastasis throughout entire body, except brain)

csweens · Regular Joined: 02 Apr 2007 Posts: 29

Thanks Michelle - I'm doing just that - Thursday night has always been the night that my son and I go to my mom and dad's for dinner - pizza night so no one needs to cook - it's funny cause before my dad's diagnosis after we finished eating he would go lay on his bed and watch tv - now he sits in the living room with us (my son is 12) - he is turning my son into a treky!!! I know that this time is precious and I think my 12 year old senses it too -

Dad had his first round of chemo this week - he says he feels fine - not even tired - is this normal? He had Leucovovin and oxaliplatin and something else that I don't know about that was in a pump for 46 hours after the first two meds - guess I was waiting for him to become very ill from it or does that come with time?

Thanks again all for listening - I really am at a bad place right now - don't know sometimes how I'm gonna keep going - just try and take one minute at a time when that happens.
Cindy

MicheleBurnside · New User Joined: 21 Feb 2007 Posts: 8 Location: Irvine,CA.

Cindy,
I think for most people who receive chemo now with all of the anti-nauseau medications out that they seem to be able to tolerate the chemo much better. I don't know specifically about the medications you mentioned, but in my fathers case he never did get sick from the Chemo. He did of course get very tired about 10-14 days after the treatment. (I have heard that many people if they do get ill it is around this time, and just when they start to feel better with their blood count coming up they are hit with another course of Chemo- Very hard to know, everyone reacts differently) My father was actually given a transfusion of 3 pints of blood (because it kills so many good cells as well)Again in my fathers case he decided not to have any more Chemo or transfusions as it was just prolonging the inevitable by maybe a month, and he would just deteriorate again. My prayers are with you and your father. That's wonderful that your father is able to sit up and watch TV with you and your son. Enjoy every moment.
Michele
_________________
Daughter of Kenny, who passed away March 28,'07 4 months after diagnosis (NSCLC IV with metastasis throughout entire body, except brain)

THE 1

Ladies,

Thank you so very much for the prayers. And I tell you, i badly need'em. in the past few months, my mom has lost somewhere around 40lbs. She's literally left with no mass on her shoulders or elsewhere in the body. She's become so weak she can hardly walk. Anyways, being the eldest son and the most close one to her, i'm still hoping that some Miracle might happen. Right now the doctors have stopped all medication including chemotherapy. We're just trying to help her gain some health so that she can sustain any treatment at all...

Cindy, its interesting to hear you atleast know the names of the drugs that are being used on your dad's chemotherapy. Most of the attendants hardly know anything or they don't really care, whatever the Doc wants to do, they let him decide. My mom was previously given a combination of Bevacizunab(Avastin) by ROCHE, Oxaliplatin(Eloxatin) by SANOFI-AVENTIS and Gemcitabin(Gemzar) by ELLILILY. You might consider reading some research on these:

Reference:

(1) Taieb J et al. Gemcitabine plus oxaliplatin for patients with advanced hepatocellular carcinoma using two different schedules.

Cancer. 2003 Dec 15;98(12):2664-70

(2) Zhu AX et al. Phase II study of gemcitabine and oxaliplatin in combination with bevacizumab in patients with advanced hepatocellular carcinoma.

J Clin Oncol. 2006 Apr 20;24(12):1898-903

So that the next time you see the Doc, you might share some technical stuff with him and he'll know that YOU know stuff too and he can't just ask u to arrange the payment and he'll do the job. I'm not sure how things go around there but generally down here Docs make sure they make as much money as they can outta any patient cuz mostly the attendants are dumb enough to blindly believe what the Doc recommends.

As for your dad, i'm really glad he's tolerating the chemotherapy so well. Grandchildren are a blessing at old age, the more time he spends with your 12 year old, the merrier he'll remain. Best of luck to your dad, i'll pray for him regularly from now on cuz i think his chances of survival are more than my mom.

Michelle, thanks for sharing your time with us. I'll pray you prosper in your life against what you did to serve your father.

Regards,

H.Q.
_________________
if GOD brings you to it, HE alone will bring you through it.

MicheleBurnside · New User Joined: 21 Feb 2007 Posts: 8 Location: Irvine,CA.

Hello H.Q.,
I'm sorry to hear about your mother losing so much weight. It was hard to look at my father also when he lost so much weight he was so weak. I pray that she will regain some strength to go ahead with whatever she wishes to do. The Gemcitibine, and the Oxiplatin are the 2 drugs that my dad was given, but he was so weak that they could only give him 1/2 of the dosage that they would have liked to have. I will say that the doctors were angry with us (not directly to my father) when we told them he did not want to take any more chemotherapy. The doctor actually said well you should have just let him die 2 months ago then. They are so cold, mean, and heartless. Can you imagine; we were devastated. We of course were trying to do the best we could and we thought that the chemo was the answer that's what they led us to believe in my fathers case and then to have this thrown in your face. I miss him terribly, but I am thankful he is no longer in pain. My aunt who was also diagnosed with the same cancer died 2 weeks after my father so it has been a rough month. I will continue to pray for your mother.
Michele
_________________
Daughter of Kenny, who passed away March 28,'07 4 months after diagnosis (NSCLC IV with metastasis throughout entire body, except brain)

THE 1

This is sooo saddening. I agree with you, Doctors are very cold. When they start off their career, some of them do it as a duty towards mankind, but later on when Pharmaceutical companies start making their lives complacent, they become ease-loving and they no longer perform it as a duty, instead they do it as a "job". But always remember, what goes around, comes around. One day or the other, someone in the Doc's family falls victim to a similar disease, only then does the Doc realise what other attendants must've gone through and then they regret having treated the families of patients with such attitude... Anyways, please accept my deepest condolences over the sad demise of your dad. May his soul rest in peace.

Regards,

H.Q.
_________________
if GOD brings you to it, HE alone will bring you through it.

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