Dear Sara,

I'm so sorry. Sorry your sister went through this, sorry for what you and her son and husband are going through, and the pain you're feeling. Cling to your faith, seek comfort there. It is a struggle to survive through the sadness. I wish you strength and hope. It's wonderful that you and your sister had one another.
Peace and comfort,
Margaret

Lainy,
It was nice getting your update and so glad to hear that it's good news.

Just hate the idea of MD visits as entertainment, but who knows, maybe that's where Teddy will arrange for you to meet a new companion. Teddy does have a great sense of humor, after all, from what you've told us. And I'm sure you brighten any waiting room, just the way you brighten our lives here on the forum.

I'm hoping the summer will bring even more good news -- enjoy getting out to do a little shopping -- and I'm sure Teddy will send you a few signs that he's out and about with you. ~

Hugs to you!
Margaret

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(11 replies, posted in Introductions!)

Dear Pat,
My heart breaks for you. I'm so sorry for your husband's death, especially from this disease, and that the two of you suffered this horrendous experience. Yes it is a difficult road ahead. Some of us here have discussed the emotional trauma caused from this roller coaster cancer, while at the same time enduring the loss of the one you love. I'm so sorry. It is devastating and I'm sorry for your pain. Praying for strength for you. Margaret

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(4 replies, posted in Members' Cafe)

How sweet!

Congratulations. I'm happy for both of you!

Margaret

Cathy,
The success of your treatment does indeed send hope to others. I enjoyed reading your description of how this site has changed and I'm so glad for it. Perhaps in another five years there will many more big changes, and we'll see this cancer brought to its knees.

Congratulations to you -- so glad for your good news and thank you for sharing it with us!
Big hug!
Margaret

Yay!
Good news Alison! Hoping along with you for good news in June. ~
Margaret

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(8 replies, posted in General Discussion)

Julie,
No advice. Just wanted to say I'm sorry and that I'm thinking of you and sending hopeful thoughts that your discomfort will ease.
Big hug!
Margaret

Thank you dear, kind and thoughtful friends.

I appreciate your thinking of me and your helpful words of encouragement. Lainy I do feel John was with us and yes, you're right, he wouldn't want us to always feel this pain. I like your mantra -- it is so true! I was so lucky to share 38 years of life with John!
Darla, thank you for keeping my family in your heart and thoughts. We are trying to keep our spirits up and most days we succeed -- and most days aren't as hard as Sunday was.
Clare, Lisa and Marion thank you -- I know that each of us has our tough times on this road we didn't ask to travel. It has indeed made me feel more compassionate toward others and their hardships; and I trust what you say about the kids, too, Marion.
Thank goodness for being able to lean on one another. Meanwhile, I always try to remember that John is happy because he's in our Lord's kingdom.
Love to all of you,
Margaret

Hi Friends,
Today was my husband's birthday. John would have been 59. It's been almost 7 months since he graduated to heaven Oct. 24. The good thing about today is that my 13-year-old daughter was confirmed in the same faith that he was baptized in.

I nearly fell to sobbing during the ceremony but worked really hard and managed to hold it together. The emotion just came crashing over me without even realizing it was happening until it was almost too much for me to control. Of course that would have really embarassed my teenagers!

I think this day will be extra special for my daughter later in life. She really loved her dad and he loved her very much. Still can't believe he's gone.
Margaret

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(23 replies, posted in Introductions!)

Oh my gosh, Stephanie, I'm so sorry. Even though I saw my own husband fade before my eyes in two months' time last fall, it is still so shocking to me to hear when others also pass so quickly from this disease.

As someone who is only about six months into being a widow myself, I offer you my deepest sympathy.

I'm glad you've found this community of fellow travelers. I've learned so much here about the disease my husband died from and it's helped me to understand what our family, particularly my husband, went through.

I suspect you take comfort from knowing Matt found this site and was making use of it. I hope you'll find this family of supporters will also be a comfort and a help for you too.

Again, I'm sorry. May the caring of others help you find some respite from the sorrow and pain of your husband's passing.
Margaret

So sorry Nancy.

Sending prayers for strength and comfort for the two of you. Hope you can feel that the Lord is there for each of you, holding you up.

Margaret

Here are books I read to better understand what was going through the mind of my husband when he was sick. They shed light on the comments of people at the end of life, with suggestions on how to talk with the terminally ill. Wish I'd had them sooner when my husband was still alive:

http://www.amazon.com/Final-Gifts-Under … 1451667256

and

http://www.amazon.com/May-Walk-You-Home … 159471214X

Margaret

This is wonderful. THank you Marion.

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(8 replies, posted in Introductions!)

Crissie,
Your description of your father's progression sounds so similar to that of my husband's. My husband 58, died in October and the last few weeks he was bed bound, hardly ate anything, vomited quite often, was constipated, couldn't sleep except in small doses, lost lots of weight until he barely looked like himself.

My husband wasn't really able to talk much at the end, and really needed the pain medicines, which made him sleepy with only a 20-minute window or so of being wakeful and able to communicate with us.

It was very sad to witness. Takes real courage for a person to endure to the end of this disease.

Margaret

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(39 replies, posted in General Discussion)

Percy, Mary and all of you who are fighting this horrible disease. I'm sending up prayers for you and your caregivers.

Having watched my husband fight this disease, I have so much admiration for the courage and bravery that each of you display. I know it isn't any consolation, but you are all heroes to me.

Don't hesitate to share your thoughts your worries your fears. Many of us have been there or have been with a loved one who has been there. This forum is for you. In hindsight, I wish I'd known more and had my eyes wide open while helping my husband, especially at the end. We both would have been better prepared.

So I advocate for sharing more about the reality of this disease and the path it takes, not less.

Peace and love to each of you,
Margaret

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(23 replies, posted in General Discussion)

Me again.

Just want to add that my husband's cc: was never directly discovered. He was diagnosed by eliminating virtually every other cancer through the tests.

I assume this means that it was so embedded in the bile duct that it couldn't be seen by any of the usual testing/biopsy means.

Margaret

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(23 replies, posted in General Discussion)

Crissie,

Thanks for this thread. I go over what may have been symptoms all the time in my mind.

Some itching in the spring, but not so extreme it caused concern. Then it went away on its own.

At the time, we suspected nothing more severe than his annual allergies, with stuffy nose, drainage in his throat, coughing. It was a bad allergy season last spring, so it didn't seem unusual.

He had a few stomach events -- some apples that didn't agree with him. Some nuts that upset his stomach. Some fish that upset his stomach. A few bouts of diarrhea. That was over the course of the year prior to diagnosis.

He was feeling some back pain. But then he'd ridden bikes all his life and had had a few wrecks. Had worked construction as a young man and had some back issues from that. Was in a desk job and had to commute so thought he wasn't getting enough back strengthening exercises.

What got his attention: Went to dr for the worsening allergies in mid-August and was diagnosed with pneumonia. Blood tests showed nothing to be concerned about. One week later his stomach blew up like a balloon -- extreme ascites. That was the beginning of all the ABC tests. The tests continued for four weeks, including at MD Anderson with Dr. Javle.

Biopsy turned up tumors on the liver, Catscan showed a small spot on his lung, other tests -- mets throughout the peritoneal fluid and cavity. He was diagnosed Aug. 26 and died Oct. 24.

In hindsight, I wonder if these events individually were signs of the cancer, or if they were, some or all of them, individual illness events like all of us have now and again. Or has the cancer been there since the time I met him in 1975 when he got what we thought was food poisoning in the college dorm cafeteria from some ham that he ate?

How do we explain cases like the 12 year old boy in California who recently died of the disease?

From the variety of all our experiences, I guess what we do know is that more medical knowledge is needed. As others have said, it's a sneaky cancer, until it smacks us over the head. I hope and pray for a screen someday to save lives. For now, I am grateful for this forum because sharing information will lead, I believe, to answers.

Wishing each and every one of you a good day. My thoughts and prayers go out to all!
Love,
Margaret

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(21 replies, posted in General Discussion)

Kris,

I'm so sorry. My husband so appreciated a warm wash cloth on his forehead and bites of cold lemon-flavored sorbet when he was feeling so bad.

If you can get extra hands for help, such as hospice, then you can spend more time being close with Mark.

From what I've read, sometimes our loved ones' statements that make them sound like they are confused, may instead be symbolic/coded messages about their wishes at this point in their life.

Remember that we are all sending our love and thoughts and prayers for you and Mark -- a sweet, loving couple! So glad you have each other.~
Big hug,
Margaret

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(53 replies, posted in Introductions!)

Hi Olga,
I'm so sorry. Having been where you are, I know that it's so difficult to even believe this is happening -- thus the feeling it's a nightmare from which you will awaken. This kind of news can leave a person in terrified, shock-filled pain. Take it a step at a time, a day at a time, a moment at a time. Being on this site and getting information from so many people experienced in this fight is the best thing you can do -- so take some solace and comfort and strength from that.
Come here as often and whenever needed. Ask whatever questions you have. This is a family that shares its knowledge and then backs it up with caring and kindness and support. Again, I'm sorry, there is no rhyme or reason or fairness. But you are not alone.
Much love,
Margaret

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(12 replies, posted in Members' Cafe)

Lainy,

After my husband died this past October I felt his presence quite often. After awhile it seemed like he wasn't present -- and I had the same feeling that you speak of: that he was busy learning to be an angel. Lately I've felt his presence again. But it does seem to come and go, as if he's off on a mission now and then!

Margaret

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(12 replies, posted in Members' Cafe)

Dearest Lainy,

What a beautiful birthday present from your beloved and sweet Teddy. Of course he's going to let you know he's there for your special celebration. And from what you've told us about him, that seems just like him to send you a sign in that tender and loving way.

Happy Birthday from your family here on the cc: board. We appreciate you so much, and our hearts are filled with gratitude for your caring, encouragement, friendship and wisdom.

Wishing you all the best~
Much love,
Margaret

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(15 replies, posted in General Discussion)

Thanks Marrions.
Thanks Matt.

Is the place of tissue retrieval the medical facility where the biopsy was performed?

My husband's biopsy was at one hospital. Then he had a 2nd opinion at MD Anderson. I think the biopsy material may have gone to MD Anderson, but I'm not sure.

Is biopsy material normally saved? If so, for how long?

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(15 replies, posted in General Discussion)

Thank you. That's helpful.

I've been wondering how this relates to the Patient Registry being organized by the CC Foundation and the Mayo Clinic:

http://vimeo.com/36511521

Should we be contributing biopsy material? Hope that isn't a stupid question, but I know that if there was some way in which my husband's cc ordeal could contribute in some way to the greater good, he'd want me to follow through and see that it is done.

My husband died in October. His father died this March. My father-in-law's family did have some history of liver cancer. I'm wondering if I the Patient Registry, or some registry, would want genetic material from both of them, since my father in law also had a lung biopsy for lung cancer.

Thank you,
Margaret

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(8 replies, posted in Members' Cafe)

middlesister I'm sorry for your aunt's passing. That's a lovely tribute you've written -- how beautiful all the love you have for her, that she sowed in you through the relationship the two of you had. Your love for her is a testament to her wonderful nature.
Thanks for sharing that with us.
Margaret

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(15 replies, posted in General Discussion)

PS

Crissie and others wondering about the hereditary aspect, isn't genetic testing an option to get some insight on the chances of it showing up in the next generation?

Sorry I don't understand much about that …