1

(21 replies, posted in Introductions!)

Wonderful news, Anne-Marie.   I hope you are enjoying a bit of Australia!    All visitors there that I know, love it!  Hopefully you are recovered from the surgery and getting on with life.

2

(11 replies, posted in Good News / What's Working)

Hi, Lisa,  You know i am THRILLED to hear the good news..you are a superstar!  We WILL talk soon, I promise!
xxoo K.

3

(6 replies, posted in Members' Cafe)

May that "lightened load" continue to free you to enjoy all that you deserve.  Now it's time to make a box and decorate it with pictures of all the things you are going to do and enjoy and some symbols of what you will do to continue LIVING and ENJOYING life!  Keep us posted as you journey on.

4

(11 replies, posted in Good News / What's Working)

Have a wonderful trip to Oregon!  I know you will enjoy every minute (and not be deterred by the snow that seems to have hit the East this year smile!  Such great news about the CA19-9 marker!

5

(7 replies, posted in Good News / What's Working)

You are right.  I remember thinking I would never see 70, the youngest to die in my family (I'm the third out of four); that I wouldn't get to see my youngest make it even through middle school…my grandchildren would never know me.  It seems to be a whole grieving process and you are right,  It IS about family and friends.  I am grateful for every chance I have had to be with my 7 children and 6, almost 7, grandchildren.
I recently read on here about the way one man coped with the uncertainty..by being involved in helping others.  It gave him a sense of peace in doing this.   All of you on this board have given so much in support, it is truly amazing.  It's time for me to expand my circle that narrowed while I dealt with this ( the husband of a friend of mine called it a "dilemma "..fits, doesn't it?).

Kris, Happy Anniversary coming up!  Almost Valentine's Day anniversary smile

6

(31 replies, posted in General Discussion)

Porter….sorry to hear you are going through another operation.  Will be thinking of you.  Have a friend who has just gone through her 3rd since original surgery..for scar tissue blockage.  I have had a lot of pain on and off, too, with scar tissue.  It's amazing that it continues to form and cause pain so long after surgery.  As others have said, you seem to be in good hands and you will get through this.  Sending lots of healing thoughts to you for a quick recovery.

7

(7 replies, posted in Good News / What's Working)

I had scan last week and CA-19-9 check…good news and 17.5 CA-19-9.  It is hard to believe it has been 4.5 years.  Dr. Pawlick said if the August scan is clear, I can go to once year.  As some one else posted recently, it is hard to think of having no reassurances for a year, but it is a toss up between that and the anxiety that goes with the scan!

It has been such a boost to go through all of this with you…such beautiful spirits and support for all.  I have recently read posts by people whose messages I had not seen over the past few years and am in awe of the courage and faith and hope that people have.  It has helped me in more ways than anyone could know.

And my 7th little grand baby is due in two weeks in Ireland and our 50th wedding anniversary on February 27.  I feel so blessed.

Much love to all of you on this same journey…...

8

(11 replies, posted in Good News / What's Working)

Wonderful news, Kris!  I understand about going longer..my doctor said if clear in July, I can go to every year!  I gasped.  He took it to mean I was unhappy to still have to have a scan.  I had to explain that I didn't know if my nerves could take going a full year without reassurances!  It is so hard to "let go."  But I am so glad to hear such good news for you all!

Just want to post an update.  Just had my 4 1/2 year scan..longest I have gone without a scan..6 months.  Clear, CA-19-9 at 19.5.  Have another scan at 5 years and if clear, I can go to yearly scans.  And yes, I, too, STILL look through the Good News section to stay positive!  I never thought I'd get to this point.  As with others, many good things have happened through these years and one of the best will happen at the end of February..another grandchild..number 4 for our Irish clan!
Thanks everyone for posting their good news.  I love it and I hope you will continue to post.
xKathy

10

(9 replies, posted in Good News / What's Working)

And Lisa…even more good news for you today.  I am so happy to hear that all is well…except for that durn pain.  I wonder if others can chime in about the pain that seems to come and go..with intensity at times.  Have others experienced pain several years out from surgery?

11

(12 replies, posted in Good News / What's Working)

Five years is wonderful, Nancy.  Did you ever dare think?  You are really showing what perseverance can do!  Keep it up!  So happy to hear the news.

Kathy

12

(14 replies, posted in Good News / What's Working)

Randi..it's so true about looking for nuggets of hope.  I am having my 6 month scan in two weeks so the old nerves are still there and active!  The one other thing I can't seem to shake is going to the dark place if I have an ache in my side or under my ribs. I have to do a lot of talking myself out being convinced that it has come back.   But it is a small price to pay for being well and enjoying the rest of my life.

This is the greatest support anyone could hope for.

Happy New Year, Everyone!

13

(40 replies, posted in Good News / What's Working)

Please DO give yourself a big WHOPEE..So glad to hear about the 5 year anniversary….Wonderful news to come back to!
x0Kathy

14

(13 replies, posted in Good News / What's Working)

Steve…what did you all decide to do?   I chose not to do the chemo…had clear margins…jury was out about effectiveness.  It was a hard decision.  I am 4 years out!  Hope you are all well.  Let us know how you are doing.
Kathy

So happy to hear your good news!  What a spirit!  Keep enjoying every minute….
Kathy

16

(17 replies, posted in Good News / What's Working)

Such WONDERFUL news, Randi.  Take a deep breath, rejoice and widen the distance!  So happy for you.
Kathy

Wonderful news!  Keep up the good work!
Kathy

18

(10 replies, posted in Good News / What's Working)

Such good news Julie (except that toe!). Keep
Up the good work. Hopefully the kidneys will behave too.
Best wishes,
Kathy

19

(15 replies, posted in Good News / What's Working)

Gavin and Melinda. Thank you!!xxoo the only good thing for me about CC was losing 35 pounds! A lifelong struggle. And sure enough it all came back. Now to lose it and not worry that I am losing because of CC. The mind does strange things. At least mine does smile

20

(15 replies, posted in Good News / What's Working)

Gavin, Kris, Karla and Sara (Willow)…Thank you SO much!  I am trying to convince myself that life is normal now
whatever normal is….:)

Marion..thank you for letting me know about Dr. C.  I truly miss him.  He had such a connection with his patients that is unique and goes beyond surgical skills and knowledge.  Thank you for encouraging me to write.  I have already looked up his address.  I am glad to hear he is happy in  his new position in spite of my trying to convince him that Texas was nowhere near as good a place to live as Maryland (sorry Texans!).  When you see him again, remind him of his fan club in Maryland who owe their lives to him.

21

(14 replies, posted in Good News / What's Working)

Congratulations!  Just like you, I come and go on this site, but part of what brings me back are the messages of hope and success.  I always looked for those when I was feeling most down.  I, too, just passed the 4 year mark (diagnosis 4 years this month, surgery Sept 27, 2012)..and hope that people reading these messages know that there is indeed hope.  May you keep getting those great reports.
Kathy

22

(15 replies, posted in Good News / What's Working)

Kris. Thank you!  It is so comforting to know there is a cheering section out there.  I love coming back to this site and recognizing familiar names over the four years.
Lainy. You are right. Time to get those innards under control and show them who's boss.  I am sorry to ear of this continuing struggle and  hope your August appointment gets you more relief.
Big hug,

Kathy

23

(15 replies, posted in Thought for the Day)

Hi Marion. Now I can as another name to my favorite people who have birthdays in July ( son 21st , daughter in law 20th, grandson 12th, mother 2nd as well as Adoption Day 16th for our two youngest).  I join with all the others in wishes for a wonderful new year. We owe you so much.

Kathy

24

(9 replies, posted in General Discussion)

Hello, Sharon,
I had surgery 4 years ago at Johns Hopkins for a Klatskin tumor and was given the choice of chemo or no chemo. At the time my doctor said there was not enough evidence that it was effective. I decided against it. It was nerve -wracking to face that decision.  Four years later I am so far clear. People who have had the chemo-radiation have had recurrences. People who did not have been cancer free and vice versa. It is a puzzle. I think every person's situation is different and their doctors suggest different things.  It makes the decision that much harder. It is a situation where you really don't ever know and that's what makes it hard to live with. In the end you have to do what feels right for you based on your research and doctor's opinions. Good luck and keep us posted.
PS several years ago a man posted that he was 16 years from
His cancer surgery and his doctor still didn't consider him out of the woods!  It's learning to live with that knowledge that is hard!

25

(15 replies, posted in Good News / What's Working)

Marian..have you heard anything about  "my favorite surgeon?" I do miss him! I don't know if he does any more surgery for cholangiocarcinoma or Is too busy being head  of surgery  The girls are 14 and 15 so I do have to hang around a bit longer for them!  They are great!  The 15 year old just went on an international dance exchange to Europe for a
Month so we were groupies and followed her to Denmark then spent 3 more weeks, 2 with our son, his wife and three young children (who live in Ireland) in a chalet  in the Swiss Alps. Broke the bank but it was heaven. Life is good.
I was so pleased to hear about the new study being done on younger patients.