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(7 replies, posted in General Discussion)

The sadness is overwhelming.  I have not lost my mom yet, but in many ways I feel that I have lost her - the healthy her.  Her health has declined rapidly, so much so that it's almost unbelievable.  I am so sad and so scared and as much as I am sad at the loss I will be facing, I'm also horribly sad that she has to go through this hell.  Seeing the decline and the changes and just imagining what she must be feeling is almost worse than the sadness I feel about losing her.  At the same time, I am trying to be strong for her and in front of her when is really want to lay in bed myself and just cry.  I feel as if I'm living in this dazed-like state.  This is an absolute nightmare.  I have a 3 year old that I want to have a happy holiday so I am also trying to be strong for her.  What a terribly cruel disease this is...I wish no one had to face this or suffer at its hands.

I'm so sorry for what you are going through with your mom.  My mom, too, is fighting this terrible cancer.  She is 62.  Like your mom, she has always been healthy and strong.  She still is, but I know that one day that will no longer be the case.  I have a small daughter who is crazy about her grandma and I dread the day when I have to explain why we can't go to grandma's house.  Life can truly be so unfair sometimes...and heartbreaking.  Please know that you and your family will be in my thoughts and prayers.

Michelle

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(3 replies, posted in General Discussion)

Thank you, Lainy!  You're absolutely right about the dairy and high fat foods!  They really upset her stomach.  I believe she has contacted hospice to put things in place, but I will double check.  Thank you again for the information. 

Michelle

Ps...yes, dancing!  My mom has more energy at 62 (with cancer) than I do at 35!  She's always been so full of life...I so wish that this wasn't happening to her.  But, one day at a time.

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(3 replies, posted in General Discussion)

I haven't been on here in quite a while.  The last time I wrote, my mom was planning on getting a second opinion from Johns Hopkins, which she didn't do.  Instead, she did visit the University of Chicago and was a candidate for a clinical trial.  After a lot of debate, my mom has decided to forego any treatment and try to enjoy her time, while maintaining her quality of life.  So far, she is doing fine, with the exception of bloating after eating.  She can only eat small meals at a time.  Aside from that, she appears to be doing okay and says she feels great.

My question is, what should I expect as this disease progresses?  Will there be a sudden decline?  A gradual decline in her health?  I have no idea what to expect.  I see her now and just can't believe that she is so sick.  She looks great, acts great, and claims to feel great.  She goes out dancing and is still very active and energetic.  I just want some insight as to what I can expect.  Any information would be appreciated.

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(10 replies, posted in General Discussion)

Lainy, I'm so happy for you!  That's wonderful news!

Best Wishes,

Michelle

I have read the same.  The surgeon my mom talked to said that this is an aggressive cancer, but I've read conflicting things...some say it's slow growing, others say it is aggressive.  I'm wondering which is it, too?

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(7 replies, posted in Introductions!)

Thank you, Mark and Gavin!  As much as I wish that nobody needed to be on this website and fight this terrible cancer, I'm so glad that I have found it and have been able to connect with all of you.  It truly has provided me with not only information, but I also feel a real sense of support through all of you - and this has brought me a degree of comfort, hope, and strength. 

Johns Hopkins called my mom yesterday and she is scheduling an appointment with them today.  I read on here that Dr. Choti, who I was hoping that she would be able to see, is leaving JH for a position in Texas, I believe.  So far she is feeling good, but has had horrible indigestion.  Not sure if this is a symptom of the cancer or a result of what she is eating.  I will keep you posted on what we find out. 

Again, thank you all for welcoming me and for the support and information you have provided. 

Best Wishes -

Michelle

Thank you, Kris!  I want you to know that I did tell her and you gave her hope and inspiration!  I so admire your spirit and love your attitude.  I will be thinking about you as my mom and I embark upon this tumultuous journey.  Please keep me posted on how you are doing. 

Michelle

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(7 replies, posted in Introductions!)

Thank you all so much - for the information, but also for the encouragement and support!  I'm trying to keep her spirits up, as well as mine - as you all know, it's such a roller coaster of emotions.  Lainy, no she does not have an appointment yet, but Dr. Choti's administrator spoke to my mom today and is going to call her tomorrow for appointment information.  My mom called the surgeon we met with here in Detroit and requested that he release her medical records to Johns Hopkins.  Marion, thank you, I will let her know.  Again, thank you so much - it's so nice to communicate with people who understand.  I will keep you posted. 

Michelle

Hi Dorien and all - I'm new to this site, but I am soooo happy that I stumbled upon this thread!  Thank you for posting this question and for all of you who answered.  I, too, have been looking everywhere for answers to this exact question, but haven't been able to find anything.  My mom, who is 62 was just diagnosed with CC - we weren't told the stage, only that surgery is not an option because the cancer has spread to the regional lymph nodes.  The surgeon at Henry Ford offered us this explanation - once it has hit the lymph nodes, there is no survival benefit in having surgery.  She is seeking a second opinion at Johns Hopkins.  I think my mom feels like this is a losing battle, and therefore, is afraid to try chemo and/or radiation.  Honestly, I've been losing hope as well.  I just don't know how to come to a place of acceptance of losing my mom!  I'm an only child and have always been so close to both of my parents.  I have a 3 year old daughter who is just so in love with her grandma and just thinking that she won't be able to have a life with her is heartbreaking to me.  My mom has always been healthy and strong - she still is and you would never know she has cancer - maybe this makes it even more unbelievable to me.  Anyways, I just really wanted to thank you, Dorien, for posting this question - and thank all of you who responded.

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(7 replies, posted in Introductions!)

My beautiful, 62 year old mom was recently diagnosed with CC - although we weren't given a stage, just that she has a 6 cm tumor on her liver with mets to regional lymph nodes.  The surgeon we met with said that surgery was not an option because the cancer was in her lymph nodes.  According to him, there would be no survival benefit to the surgery since it has spread.  She is seeking a second opinion, however, with Johns Hopkins with a doctor who specializes in bile duct and liver cancer.  I've been trying to gain as much information as possible about this horrible cancer - and I guess I've been looking for hope as much as information.  My mom has always been healthy - she still feels great since having two metal stents put in about 6 weeks ago.  This is just an absolute nightmare - her and I have always been so close.  I'm trying to be strong for her, as well as for my three year old daughter who loves her grandma so much.  Thinking about the future and what's to come really scares me.  I've also been trying to convince my mom to fight with everything she has...she has been offered very little hope by this surgeon and by what she has read on the Internet, that she doesn't want to try chemo because she feels this is a losing battle.  She is also afraid of losing her quality of life, which I can understand, but I don't want to lose my mom.  Any experiences, advice, anything?