1

(13 replies, posted in Announcements)

I agree!  I love meeting up with my cholangio family.  I know many loved ones from above are very happy we have found eachother.  Marion, Im serious about coming to California this summer and Lainy, we would love to stop to see you and Robin.  I dont go on the site like I used to, maybe because its 2 years that my dad passed, and Im still just so sad...but I get updates daily from my mom, and I feel very connected to this little "club" that unfortunately keeps growing..
  Maybe, I can get Patty to come along, but at the very least her and I want to take a ride to see Darla.
Thanks for everything Marion, my mom really, really enjoyed her experience and is so glad she did something to help.                                             
xoxo
Barbara

2

(13 replies, posted in Announcements)

Ive been looking for a reason to take my mom to California.   Let me know the date of walk when it is decided.  Now Im thinking we definitely need a walk in Chicago as well.  Ill get a hold of Patty, Im certain she would help me figuire out how to get it going...
Barbara

3

(5 replies, posted in Announcements)

Hi everyone!  I didnt have the  pleasure to attend the show,  but from eveything I heard from my mom and Marion it is has been a great success.  The location of the  booth alone certainly gives our cancer some pressence.  My mom commented that when some Italian Drs approached her at the booth and she asked in Italian "conosce questi malatia?"(do you know this cancer?") and they responded somberly "por troppo, si"(yes, unfortunaterly we do) She realized that this cancer is all over the worId and many Drs when they see it, just dont know wha to do to treat it.
didnt find this site until a year and a half after my father was dignosed because his Onc didnt even use the term Calangiocarcinoma, she just called it Bile Duct Cancer.  She told me once she only saw this cancer a few times in her career.  This orphan cancer needs all the exposure it can get,and people like Marion(wonder women) are doing so much to make that happen.
I had the pleasure to have dinner with several of the board members of our site Saturday night(Stacie, Sara, Seth, Rick, Dawn) and as I told them the other night, I am internally grateful to all of them for this site.  It saved me when my dad was going through the final stages of this awful disease.  It was my lifeline.

4

(7 replies, posted in General Discussion)

Ashley,
your post is just so, so sad.  It is very difficult to come to this site and read some/many of the posts because this cancer is just so incredibly unfair.  You dont deserve to lose your momma at such a young age, nor your sister, your dad and your sweet baby, and most importantly, your mom doesnt deserve this disease.    I have no words except to say Im sorry.  I do believe we all go to a better place and although I dont know why some have to leave far too early, I do believe God has a plan.  Ill put you, your family and esp your momma in my prayers.
xoxo

Barbara

5

(14 replies, posted in General Discussion)

I agree with Lainy there is no right or wrong to the grieving or loss situation.  Everyone is different, and everyone handles it differently.  Some fall apart and it takes a long time to pick up the pieces and some  have a heavy heart, but function out of need or want.  I suspect if one has children(young children) in your case, your sweet and lovely Hannah, people find the strength, atleast externally to be strong.  For me it has been a process.  My dad has been gone almost two years, and now some memories or thougths of him that used to bring tears to my eyes, make me smile, but sometimes I still have moments of really missing him, of tears, and I suspect that will always occur.  I believe it becomes as many say on this site "our new reality".
I am very sorry for your loss.
peace
Barbara

One of my fave inspirational poems of all time, I needed to read that today.  Thank you
Barbara

7

(57 replies, posted in Introductions!)

Kelly, so sorry, I am very familiar with the initial devestation you are feeling. I remember it just felt sureal at the time, like I just couldnt believe this "thing" was growing inside my dad.  At the time my dad even felt ok, but the jaundice was just making it so much more difficult for him and all of us.  I have to admit that eliminating his yellow skin and his eye whites that turned yellow was a complete relief.  Ask his physician if he knows of a gastrointerologist in the area.  That is the Dr. who placed the stent in my dad.  We had that procedure done within a few days of diagnosis.  So sorry Kelly.  Take care of yourself too!
xoxo
Barbara

Marion,
Got your E mail, Thank You!!!!!!!

Hey Darla,
If you wanted to come and not have to drive back at night, I have a spare bedroom.  Come to think of it, so does my mom, if anyone else is thinking of coming, your welcome to stay with us.   Let me know:)

I plan on looking up Cindi(Lindas SIL) and Lindas mother soon.  It was so sad to hear Lindas mom say " I cant believe I only have two sons now, and not a daughter", and to see her little boy walking around in his little suit.....
Yes, by June us Chicago dwellers get the warm weather we have earned!!  Its been a tough winter!  Either way, if the event is outside, Ill tough it out if it helps us get closer to a Cure for this dreadful disease.

Small world!! Today I met a long standing customer of mine, that I had never met face to face, and turns out he is a Gastrointeroligist at Evanston Northwestern Hospital.  He knew exactly what CC was, he has only seen a few cases, and he kinda sighed when I told him what my dad died of, anyway, he is going to be at the ASCO in June, I told him he needs to go by your booth Marion.
BTW, I am so glad we met Linda last summer, my mom and I actually went to her wake and met her family, her sister inlaw and mother were amazing.  It was heartbreaking, but it was so great to meet them face to face and hear first hand how much this website helped Linda.  Her little boy was just a doll!  Now he has an amazing guardian angel watching out for him.
Peace
btw, Marion, I can make it to the event Feb 28.  Is it outside??brrrrrr:)

12

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

You just filled so many people with hope, heres to 4ever clear scans:) !!!

13

(14 replies, posted in General Discussion)

Wow, great news!!!  I love a good CC story.  Im so happy for your dad and all his family.  Benign is one of my favorite words in the English language!
Keep the good news a comin..
xoxo
Barbara

14

(9 replies, posted in General Discussion)

Toni Ann,  so sorry for your loss.  Seems like your mother is a wonderful women, and your memories will keep her alive and with you forever.  More then sadness, I felt  wave  of relief when my dad passed from CC that the suffering and pain was no longer...
I wish you peace in the days, weeks, months to come.
xoxo
Barbara

15

(26 replies, posted in General Discussion)

That is wonderful news.  I pray the chemo continues to work!  Sounds like Dr Gores is an angel, and Mayo is doing an amazing job taking care of you.  Safe trip home!

16

(14 replies, posted in In Remembrance)

I just read your post and it made me cry.  What a beautiful relationship you must have had with your husband, and what  a beautiful gift you and your family gave him at the end, and he also gave you.  Just as Jeffrey is taking care of the family on earth, Im certain your beloved will be taking care of all of you from above.  I wish you peace in the days, weeks, months to come.
xoxo
Barbara

Im so sorry for what you are going through, it seems you have an amazing mom and your kids an amazing grandmother.  Shes way to young to leave you all, and it isnt fair.  My son was 7 when my dad was diagnosed, and 8 when he passed, so he was young, but not too young to forget his grandpa when he was sick.  He remembers many sick days, even the day he died(all 6 of his grandchildren were with him) he also however remembers "healthy" grandpa.  The grandfather in the garden, the grandfather showing up unexpectedly in our kitchen(we were neighbors) the grandfather buying a lemonade at his lemonade stand and paying with a $20.00 and saying keep the change.  We have managed to keep his memory alive by talking about him constantly.  I thought his memory to my son and neices and nephew would be tainted by the memories of him being sick, but thats not the case, they dont focus on that, they focus on the healthy grandpa memories.  I hope your kids can give you strength during this period and in the future, I would have had a much more difficult time without my son and neices and nephew.  Peace to you and your family in this very difficult time.
xoxo
Barbara

18

(5 replies, posted in Introductions!)

Dear Lanne,
welcome to the site, although it does seem as if you have been here a while...Im sure in the 18 months with your mother and CC, you have had some highs and many lows, and now you have reached that definitive point many of us caretakers reach-hospice.  Calling for Hospice for me was in a way a relief to share some of the burden and also a gut wrenching acceptance that my dad was not going to beat this cancer.  I know this must be so hard for you to give up hope.  I hope your experience with Hospice is better then Lainy's.  I cant complain about our experience.  We kept my dad at home, but our nurse came often and was available anytime we called wether it was in the am, middle of the night etc....when we needed more morphine it was always delivered within a few hours.  We tried to give him the least amount of morphine that he needed to control his pain because we knew as soon as we started up-ing the amount, he was going to be too out of it to even talk. We didnt want to not hear his voice anymore, but gradually the pain kept getting worse, and obviously the pain won out over communication, and then we didnt hear his voice ever again.  Lainys right, give your mom lots of I love you's, hugs, kisses.  She will know you are there and comforting her.  I wish you peace and strength during this sad time. 
xo
Barbara

Hi Mellanie, well as the saying goes no one ever says at the end of thier life "I should have worked more".  I think the saying holds very true for caretakers.  It wasnt my spouse with CC, but it was my dad.  There is no where I would have rather been then with him, helping my mom take care of him through his illness.  I have my own business, and probably lost more then half of my business while taking care of my dad, but to this day I have no regrets, and wouldnt do anything differently.
Im so sorry that your life has changed drastically and your "dream" house is no longer going to be easy to manage.  That breaks my heart for you and your family.  I agree, I hope what ever decision you make brings some sort of peace and lightens any burden for you that is possible.
You are in my thoughts and prayers
peace
Barbara

20

(35 replies, posted in General Discussion)

Andy, that would make sense that maybe the tube split.  My dad had 4 stent changes and one of the times the stent had cracked.   He never had an external drain, but  I wish he did because he had so much fluid inside of him and the build up made his abdomen swell like a women 9 months pregnant with twins and he pain was horrible. 
I totally know what you feel like with your dad not wanting to go back to the hospital, the last few times we had to go, my dad didnt want to...he went but it was heartbreaking.  He, too, was fearful hed end up having to stay, or somehow a procedure would be done that would cause more pain and discomfort.
Its great that your dad is pain free!! your an awesome daughter, and Im certain he knows he is lucky to have you going through this with him and your mom.
xo
Barbara

21

(15 replies, posted in General Discussion)

I read your post through tears because you sound as enamored and dedicated to your dad as I was.  This cancer is brutal and heartless and takes such good people, but I know now(especially from this site) the extra 20 months we got with my dad, were a gift.  We traveled, spent lots of time together as a family, my dad kept working because he loved his work, and we never talked about the "whys and what ifs".  I still cant help thinking sometimes about the last months/weeks/days/hours of his life, but I think about it less, and remember more the many years together, and the last good "healthy" times we had with my dad.  CC has  way of robbing family and friends of CC patients of so much, but never our memories, esp memories of people who were at one time alive and strong and full of life.  Keep building lasting memories with your dad!  You obviously realized the value of every moment spent with him on earth.  He truly must be a wonderful man to have raised such a kind and loving daughter.
xoxo
Barbara

22

(134 replies, posted in General Discussion)

Hans, although your posts are ofcourse sad, because it has always been obvious how much love you and Kris shared and your pain is felt, your posts are also so comforting because you do sound like Kris, in your observations, depth, emotions and humor.  It seems while the few short years you were together were not nearly enough, the connection you shared take some people a lifetime to find.
Kris helped me so much when my dad was sick and at the end. It takes a very special person, to have  this monster illness, and still be able to provide others with comfort, joy and laughter.
xoxo
Barbara

Hi Cindy, how great it is if there are no mets!  Im wondering if the chemo worked to shrink the tumor?  Northwestern in Chicago may be worth a phonecall, I know in my dads case, they were able to operate and remove the tumor.  It is definitely always good to have an advocate getting info, processing info, helping with decisions, your aunt is lucky to have you.

24

(14 replies, posted in General Discussion)

Hi Rick, I would ask your Onc if it would be possible to take a diuretic, which is an oral treatment for ascites, esp since you cant see the ascites yet, it may do the trick to eliminate any potential fluid build up.  Im so sorry for your pain, and discomfort..
peace
Barbara

25

(19 replies, posted in Introductions!)

Hi Brad, If travel would be difficult for you, the Surgeon that operated on my father was amazing. He was able to perform the whipple and remove my dads tumor.  He was honest and imformative and very patient with all of our many questions.  Im so thankful to him.  His name is Dr Malcolm Bilamoria and he was working out of Evanston Northwestern, but has since moved to Alexian Bros in Arlington Heights(illinois) 
I wish you the best in your treatment.
Barbara