Topic: My world has turned upside down, dad diagnosed with CC ;'(

Hello everyone,

As I'm typing this I can't stop crying. I been crying everyday ever since my dad was diagnosed with extrahepatic CC which was in  mid March 2013.

Around January/Feb of 2013 we noticed he was losing some weight and he was not sleeping , just few minutes here and there. He went to see his PCP a few times and was just told it was all related to diabetes , had some labs done and was given sleep medication which did not work at all. Following his glucose/sugar readings where going higher and higher 300's. He was always just laying on his bed , started to look depressed and very pale. I kept on telling him we should go to hospital which he refused to , March 12  went to see his PCP for same issue of not sleeping  and actually saw a different dr since he was not available.
The Dr looked at him and immediately noticed how pale his skin was yellowish and by then my had some yellowish color in the eyes . She told my dad that labs done a week ago where very bad . Biliruben was high and  she sent him to the hospital to ultrasound done.  Hospital did US, CT scan and and ERCP with stent placement .Later that night was diagnosed with a mass.

Fast forward a week later dad went to see oncologist for first time  , told my dad he had CC but  is confident that it can be resected. Told him he will need major surgery to remove the tumor and also do a liver resection. The Whipple surgery is what is called.
Later in the visit  dad wasn't feeling well at all, Oncologist noticed my dad was very dizzy and couldn't keep his balance and admitted him to the hospital. Turn out my dad was bleeding from the inside  ( Maybe from ERCP, when they did brush biopsy )and was losing blood.  blood pressure was very low , sugars in the 600s!  He had a blood transfusion twice and was in Intensive care for 2 days , total 6 days in hospital. I thought I was going to lose him that weekend. I feel like I been living a nightmare.
After coming back home we met with oncologist in April and told my dad he needed to gain some weight and bring up his nutrition levels for surgery.  He was instructed a high protein diet and insulin shots. I was scared that if we wait too long for surgery this tumor might spread we had no choice since dad was weak and would not make it if he had surgery that time.
My dad slowly went back to his old self after the ercp he is now able to sleep , slept like a baby and his diabetes is better controlled , and went from 140 lbs to 155 lbs .
May 3 -  Dad went to see oncologist and has been cleared for surgery which is this Monday May 6 , 2013. The Dr said gave us a 60-80% that it can be taken out and the day of surgery they first need to see if it did not spread and if it did no surgery will be performed.
I am very scared , nervous, I love my dad so much ; he is only 59 yrs old , every time I see him I just breakdown inside, I never cried in front of him because I have to be strong for him but as soon as I come home I just break down, I wake up crying, as I drive to/from work I cry , sleep crying , I have become depressed because I can't handle this . It been a hard month and a half and I feel like I am being affected more by the news than my dad . He seems calm and happy and says that if God wants to take him, he is ready
The only person that has seen me at my worst is my Husband , he has been my rock and I just love him so much . My whole family is very worried , my mom is being strong for him too, they been married 30 years.
Please , PLEASE keep my dad in your prayers, I will keep everyone updated and sorry for the long post.

Letty

Even though I walk through the valley of the shadow of death, I fear no evil; for Thou art with me; Thy rod and Thy staff, they comfort me.
Psalm 23:4

Re: My world has turned upside down, dad diagnosed with CC ;'(

Dearest Letty, you are doing the right things. My husband, Teddy had a Whipple August of 2005, it bought him 5 1/2 years BUT things have changed since then and many more Whipples are performed and many new treatments have come out for after surgery and your Dad has a younger age on his side, Teddy was 73. I know this is a total shock and you probably feel like you were hit with a baseball bat, but when everything is set up and treatment begins your fright will turn to fight, honestly. I am very proud of your family for holding back tears when you are with Dad. Some people steel their minds (Teddy did) as he sat for 2 days just praying and setting his mind and he told me if anyone cries in front of him, he will not be able to do this. I warned everyone not to cry. His Sister wanted to come in and see him and be there for surgery. I warned her she cannot cry in froint of him. I have already told the Board here (cause she is kind of funny) that she is one of those professional Sicilian criers that you see in movies. She comes in the house, takes one look at her brother jaundiced and looking very ill and she runs back out the door and said, "I'll be right back, got to take this phone call". Of course the phone never rang.  Your Dad reminds me of Teddy.
I won't kid you a Whipple is the largest surgery to the human body BUT it is NOT life threatening though it can take 8 hours.  You will need lots of patience as it is a long recovery. I am glad the surgery is Monday, let it be over with and I will pray for the best results. Please let us know how Dad is doing, we truly care.
P.S. Where is Dad being treated?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My world has turned upside down, dad diagnosed with CC ;'(

Thank you Lainy for replying,

Yes I feel crushed ever since I found out about this cancer inside of my dad, I still have hopes that the day of surgery the Dr. comes up to me and says they made a mistake and it's not cancer and he will be fine. ;/
Your husband seemed like a fighter and I'm very sorry for your loss.

My dad is being treated at Angelo P. Creticos, Cancer Center in Chicago , Will be having surgery at Advocate Illinois Medical Center with Dr. Ajay V. Maker  he is the director of Surgical Oncology

Even though I walk through the valley of the shadow of death, I fear no evil; for Thou art with me; Thy rod and Thy staff, they comfort me.
Psalm 23:4

Re: My world has turned upside down, dad diagnosed with CC ;'(

Letty, I will be awaiting good news. The longer the Surgeon is in there the better the news. They do not know what they will find until they go in that is why the longer the better. BTW the next day they had Teddy sitting up. You never know how strong you are until "strong" is the only choice you have!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My world has turned upside down, dad diagnosed with CC ;'(

Dear Letty,

Welcome to the board.  I am not surprised you feel like you are in a nightmare with what has happened to your dad.  I completely understand the fear that or are feeling for the surgery on Monday.  I was elated when my sister was told they would operate but that emotion was quickly superseded by being terrified for what lay ahead. 

I want to wish your dad the very best for Monday.  Take it an hour at a time, dig deep and you will come through it.  When you are ready, please let us know how you both are.

Clare

In the stars now . . . .

Re: My world has turned upside down, dad diagnosed with CC ;'(

I remember my own diagnosis and the disbelief and yes the crying. all. the. time. I still cry six months later but now I know the triggers. Go ahead and cry, it's actually good for you to have the release and I am so glad you have your rock of a husband. Once things get moving, you will turn crying into fighting, it really does happen like Lainy says. You will find much support here. Let us know how it goes.

Re: My world has turned upside down, dad diagnosed with CC ;'(

Hi Letty,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your dad. But I am glad that you have joined us all as you have come to the right place for support and help and you will get loads of each from everyone here.

I know the shock that you are going through with your dad's diagnosis and everything else as I went through much of that as well when we got told about my dads CC. His CC was inoperable and on hearing that it felt like I had been hit in the head with a bat. I know that your head is spinning with everything that is happening at the moment, but you have done the right thing in coming here and seeking help and support. Thats good that your dad is able to have surgery and I so hope that it goes well for him. My fingers and everything else will be crossed for him and please let us kno how it all goes.

If I may, perhaps some help will also help you with how you are feeling right now about everything. We have a webinar available here on the site called "Dealing with the emotions of diagnosis" and was put together by our Dr Giles. It is very good and may be of some use to you. If you want to watch it you can view it here -

http://www.cholangiocarcinoma.org/media.htm

Also, you can ask Dr Giles a question should you wish to and he has helped many of our members in many different ways. Should you wish to contact him he can be contacted via this link -

http://www.cholangiocarcinoma.org/ask.htm

Please keep coming back here Letty and if we can help at all then please just ask and we'll do what we can for you. We are all here for you and know what you are going through right now, and we care.

My best wishes to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My world has turned upside down, dad diagnosed with CC ;'(

Hi Letty,
Hang in there and stay strong!  Never give up the hope and stay positive. My Dad had the whipple last week on Monday... So far so good. He was in for 8 hours, it's been a long week but doing really well so far. Day by day!  I have noticed the best thing for my dad is having us by his side.  Your dad will be in my prayers!  Chris

Re: My world has turned upside down, dad diagnosed with CC ;'(

I was diagnosed in September. I am 49 years old and have 3 children. I have inoperable cc. Everyday that I wake up I consider it a good day. I do as much as I can with everyday. Some days are better than others. I do feel better now then I did in November. My pain, weight and constipation issues are all under control. I have been traveling within Canada to visit with family and have had lots of people visit me at home as well. I don't spend anytime crying. My idea is that you never know when you are going to die. It happens to everyone. I could have been hit by a bus yesterday so everyday is a good day. I spend my time making memories with family and friends!! Enjoy your life and don't worry about tomorrow!