1

(8 replies, posted in Members' Cafe)

Darla, jump right on in here. Kris, some Milwaukee slang:

Bubbler   -  Drinking Fountain
Babuschka   -   Womans Head Scarf
Pop  -   Soda
"Highway A hunnert" -- When did "Highway 100" morph into this strange variation?
Borrow me    -   lend me
Dere    -   there
Down by   -   by
Stop and go lights  -  stoplights
Go park dem cars side by each.
We're goin' to da store, 'n so?
Upside Right: Means to return an object to its correct position.
Ohh, yaaa...Yoo Betcha
How's-by-you?

2

(8 replies, posted in Members' Cafe)

Kris, very cute!!! I am from KC, MO. but lived in Wisconsin 35 years, totally understand. Good to see you, cookie!

3

(8 replies, posted in Members' Cafe)

Gavin, you know more than anyone that we are here for you and your Mum as well. You are so right that COPD is horrific. I used to help an ex nurse who had copd. I would go on Saturday and Sunday to give her family some relief and when she decided to quit smoking it was too late. It is a horrible disease that ravages everything.  To me one of the worst things would be to feel I can't breathe. For all you do for all of us you are surely entitled to a little rant of your own, shows how human you are. Love you, son from another Mum and give her a kiss for me.

YIPEE, Julie, YIPPEE! 

Life is crazy, and totally unpredictable...Listen to your heart, follow your
dreams, push the limits, bend the rules, and enjoy every minute of it.
Laugh at everything, believe in yourself, and never lose faith in others.
Settle for nothing but the best, and give 110% in everything you do.
Life is a gift, appreciate all the rewards, jump on every opportunity.
And fight for what you believe. Hate nothing, Never forget where you
came from, and always remember where you are going.
Live Life to its fullest, have a reason for everything, even if it's totally insane.
Find Your purpose in life, and LIVE it!

Gav, so easy! Use 2 bottles of V8 juice, add 2 cans tomato soup, lemon juice and brown sugar to taste. That's it. Add 1 head of cabbage chopped and make your meatballs how ever you like them. Freezes well too.

Hey, Cuz, when the sun comes up that is daytime, when it goes down that is sleep time...now you got it straight??? I know it is frustrating as I have terrible side effects from my colitis infusions and I also was up until 2AM this morning. In fact I made dinner for tonight!! Sweet/sour meatballs with some cabbage thrown in. (Since we always talk food). I honestly hope things start going the better way. I like the letter E anyway as I am really Elaine. Wishing better numbers and results for you!

Dear Colleen, this is such great news! YIPPEE! Thank you for this as it gives such great hope to others. Much continued success to your Mom and we will be so excited to read the next update. YIPPEE!

8

(9 replies, posted in Introductions!)

Dear Fred, welcome to the best place to be for CC support. So sorry to read about your son, we as parents hate to see our kids get a cold let alone a rare and strange thing like CC. My husband had a Whipple surgery and when the tumor grew back 3 years later he had Cyber Knife. He was DX 9 years ago and of course now there are new treatments and trials popping up. Where is your son being treated and PLEASE keep that 2nd treatment in your thoughts as we are big believers in 2nd and 3rd opinions. Hoping that your son shows a decrease in tumor size as surgery is the best option. Here are some links you may find useful:

Newly diagnosed:
http://cholangiocarcinoma.org/the-disea … diagnosed/
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foun … resources/
Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-e … tion-card/
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professio … -registry/

WOW! Marion, this is fantastic! Perhaps this will reach more people than we ever have reached. Great article and I saw Ms Marion several times! What a beautiful family and I sincerely hope the Lil Mama runs in to that specialist. I love that she carries her Disc with her.

10

(2 replies, posted in Members' Cafe)

Julie, well you said you were working on a few of your walls but girl, NOT that way!!! Leave the head alone.

p.s. I just sent Gavin an email so he will see one place or another.

Wendy, I know there are some great DOCs there who treat CC, and I would turn this potion over to Gavin who knows better about that then I do and he can also put you in touch with Helen who started a Board like ours. I know Gavin will come on when he wakes up and I know for sure he will answer you, so please just hang in and hang on as we will get this done.

Dearest Wendy, I am so sorry to read about this part of your CC journey! First of all please don't listen to statistics as you are much more than a number and most patients seem so different than mere numbers! Would it be entirely out of the question to go to the UK or send records there for another opinion? Above all else I hope the Docs are giving you something for the pain and if it is not working then they need to try something else! Let's see what others on our Board have to say, hang in here and be strong and know you are being sent the best in wishes and prayers.

Yeah! Thank you for this great news. I had no doubt as we are in high demand! Thanks to all of you, where would we be without this joint effort. We are one of a kind! And we will persevere and WIN!

15

(19 replies, posted in Introductions!)

Mary, no apologies ever needed, we call it like we see it! Feel free to come here and rant, rave, vent or advise. This is your site and we are all here for you! Good luck on the chemo!!

Ciao, Lucia and welcome to the best place to be for CC support. I am sorry to read about your Mother and while I cannot help with chemo or trials I would like to say that we have a Search engine at the top of the page where you can type in any word and get past posts that may help. I would also like to send you the following sites which may be of some help:


http://cholangiocarcinoma.org/the-disea … diagnosed/
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foun … resources/
Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-e … tion-card/
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professio … -registry/


Please keep us updated on your Mother as we are all family and really care.

Dearest Teresa, I just answered your email and sorry about the date but I had an infusion yesterday and have brain fog. Just want to add that it is way too soon for you to feel any other way yet. Try to be a tad easier on yourself. You have lots of family right here so use us!

Oh, Duke, my neighbors are calling an ambulance as I cannot stop doing cartwheels! Not a pretty sight either. I am so happy to wake up to this post I cannot tell you!!!  Like others have said that other opinions is so important. I am over the moon with happiness for you! Get ready to ride that donkey!

19

(20 replies, posted in Introductions!)

Dear Kevin, welcome to the best place to be for CC support. SO sorry to hear about your Mum but we DO love the word stable! She is very lucky to have a son like you and with such a wonderful attitude. I also want to compliment you on your advocacy as a Caregiver as doing the research is so important. We have a Search engine at the top of the page and if you click on that, add a word or two and past posts will appear about that subject. Sending you best wishes and  best of luck. Please keep us advised on Mum's progress as we truly care.

20

(142 replies, posted in Introductions!)

Hi Matt. A couple of times Teddy's insurance denied a PET but when the ONC stepped in they approved it.

21

(7 replies, posted in Members' Cafe)

Hello, My Shelley, my friend. I had Gall Bladder out about 7 years ago....no brainer. Know that Al will be right there with you although NOT the kind of date you wanted with him! Please do celebrate his Birthday and sing it out to him, he will hear you. Wish I didn't have to see you this way but really good to see you anyway. Let us know how you are getting on! Sending best wishes and love.

Donnie, a big YEAH goes out to you! Just be aware that the Jaundice is receding but the yellow is like a dye to the skin and takes a little longer to leave. When my husband jaundiced I told him, "You know I don't like you in yellow!". Humor, always humor it helps a whole lot. Also he used to say on a positive note...."Now we know what's wrong, lets fix it!".

Dear Jason, I am so sorry about your Brother and his journey with CC.  Try not to look back at what ifs, could haves, it will serve no purpose for anything. In just these 2 years there are better outcomes for a lot of CC patients. I can promise you that in time all the good memories of your Brother will far out weigh his battle with CC. I am sure he knows you will not forget him, ever and that he hopes you can move on and keep making him proud.

  •    I wish heaven had a phone so I could hear your voice again.     
•    I thought of you today, but that is nothing new.
•    I thought about you yesterday and days before that too.
•    I think of you in silence, I often speak your name.
•    All I have are memories and pictures in a frame.
•    Your memory is a keepsake, from which I'll never part.
•    God has you in his arms...I have you in my heart

Lorraine, I am so sorry for what you and Donnie have to put up with while fighting this CC. It is sad as most Doctors realize this is a rare monster of a cancer and are willing to work with other who may have more experience. I can only wish and hope for SOMEONE to see Donnie so that you know you walked every avenue. Ego's BE GONE!

25

(17 replies, posted in Introductions!)

Dear Melinda A, I am sending you prayers, good wishes for the best, and crossing every thing I own, oh and good JUJU for the upcoming scan. I totally understand the brain fog! I have been getting treated for ulcerative colitis with infusions that cause the same thing. In the beginning it really was irritating but now I have just adjusted to it. I advised my friends and family of 2 things that help. Keep dialog short (hard to wrap head around a long story) and when I fumble for a word please just fill me in. It really works. They don't even suggest anymore, they just say the word and I give a warm thank you. 
As for the depression, it hit me a year ago...3 years after T passed. At first I didn't realize it as I never was ever before. Went to my Gastro G-d and couldn't even describe the potty talk without crying. I can't take big/heavy meds so he put me on 10g of Lexapro. It has made such a difference in my life. He recognized it where no one else had! It just takes the edge off. One night I told my daughter I watched a very sad movie and my eyes got moist but no crying and she answered me, "So, now you want me to call Dr. Mahajani and tell him to decrease the 10g?" We both laughed so hard. But, you might mention it to whom ever you both are seeing.