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(13 replies, posted in Survivor Stories -->[NEW]<--)

OK CC Family, I HAVE A GOOD ONE THAT AFTER 8 YEARS we still double over with laughter.  My Teddy "relocated " 5 1/2 years ago. He was a true Sicilian and after he was DX he started wearing his CC bracelet. He could NEVER pronounce Cholangio. We had company from Milwaukee and went to our favorite Italian restaurant. Rocky (yes Rocky) asked Teddy what was on his bracelet. Teddy says, "Oh that's my Cancer". Rocky says, "No I meant what does it say?" Teddy answers, " Angelo Carcinoma". Leave it to my Teddy to make a Sicilian our of his Cancer!! I thought I would choke trying not to laugh at the time. And, YES, HUMOR is the best way to get through bad times or any time. 

Our humor at CC was during his DX. He was very jaundice  and I looked at the ONC and Teddy and I said, "You know  I don't like you in yellow!" That time they cracked up.

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(24 replies, posted in Introductions!)

Dear Lynn, I am do very sorry to her about your hubby's down time!  I would call the DOC and tell him everything that is going on. With the things going on, we need to keep in touch with the DOC! I  I am wishing for the very best!

Dear Mr. & Mrs. Brown. It sounds like you may have received the best wedding gift ever! Wishing and praying for the best news for you both. The wedding does not make the marriage, the couple does. Congratulations and wishing you both the very best.

Hi Dave! Sorry to hear about the "tube" problems.  My husband had those issues and he also got the stitches and the drainage bag. The bag did work for him and I did the emptying. He also pinned the top of the bag to the bottom of his shirt which made it more comfortable. He even  putted golf balls with the bag in tact. Hopefully, someone can come up with a good idea for you!

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(49 replies, posted in Introductions!)

JD, what a good news post! Most excellent, indeed! I wish and pray for your hubby to keep going in this awesome directions.   YIPPEE!

Oh. my gosh! Derin!!! Two bestest things happened today, one is hearing from you and the other is your awesome news! Taking Sydney to Broadway and it seems like she was just 13! Are you still fishing. OMG! I am so elated at seeing you on the Board and doing my cartwheels ( in my mind) about your having kicked CC to the curb. You actually finally put me at a loss for words. Lov e you and your news to the moon and back! ENJOY!

Julie, go to our INDEX on the Home page and there are all kinds of posts under HOSPITALS.

Dear Julie, welcome to our remarkable family but sorry you had to find us.
I am also in Phoenix, actually live in Gilbert. I am usually not quite as frank as I am going to be on a welcome note. but I cannot think of anyone on our Board who has been treated at CTCA as they are a good Cancer Center but they do not do much with CC. CC is so rare but strides are being made. You want to be with an Oncologist who has treated quite a few CC patients. One that is open to new treatments and especially trials. If you can tell me what part of this vast city you are in I can try and steer you to a couple of ONCs. I went to Banner MDA here for myself and also had a talk with the ONC about CC and they have not treated that much in CC here. MDA in Houston is the tops.  This MDA is actually a Banner Hospital, which is good bit not where I would be for CC.  I will only go to Banner for myself or if a GREAT ONC sent me there. Mu husband had the BEST ONC but he has retired yet everything he did was at Banner Desert. Guess what I am trying to say is I would get my new ONC immediately as that would be the best starting point. Then you build a team from there. I have to say we do not want to go to a Doctor who gives up before anything is tried. We have many patients who were deemed inoperable and went on to have successful surgeries.  Again if you tell me what area you are in perhaps I can help more.

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(24 replies, posted in Introductions!)

Dear Lynn, it is so good to hear from you, Greg and the Shadows! You both have the right idea, live your life. There will never be any regrets. When we were at this type of point Teddy called our life "our Honeymoon" and would tell everyone we were on our Honeymoon. ENJOY! ANd wishing you the best and safe travel!

Julie,  Would the longer driving trip perhaps be to Arizona????????

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(6 replies, posted in Insurance)

Oh, Jonathan, I so hear and understand what you are going through. Although I am lucky not to have CC I had a Colectomy 15 months ago. 2 months in to healing the pain started. I was told I may have nerve damage on the bladder from the surgery. And it would take a year to heal. Really no one's fault but in the last year the pain has become debilitating and constant. Been to 6 different Docs and no one even has an idea what to do, like try thinking outside the box???? In the last 6 months every new Doctor I try to see either does not take my Insurance, United Health Care Medicare or they do not take the Hospital network I have and do want. I am so frustrated and my snacks consist of Hydrocodone!
I do want to tell you that my husband who was the CC patient needed a PET and we thought his insurance would not cover it as it may have been to close to the last one. I researched and found there were some PET offices where that is all that is done and the fee was 1400.00. Still high but better than what you were charged. Fortunately we ended up not needing it. I hope you can get this settled and please let us know how it comes out.

Hi, Daisy. After my Teddy had his Whipple he would get very tired and went on a regime of B12 shots once a month. Made a huge difference and we could tell about the beginning of the 4th week his energy level would zap.  The other thing I was thinking about was Thyroid. Could it be that? And, I know that depression can all of a sudden just hit so it would not be a bad idea to mention this to the DOC.  Sometimes our patterns just take a change when we are going through or have gone through big changes to the body. Sometimes when I have trouble sleeping a cup of hot tea helps or I will put music on very softly.  Best of luck.

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(2 replies, posted in Members' Cafe)

That is so way cool, Cookie! You all look wonderful and glad you had a great time. Also glad to hear you are working and good luck on the house hunting! Love YU!

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(1 replies, posted in Members' Cafe)

........and that's what friends are for!  Just like you!

Greetings to my remarkable, awesome and caring family here at CC.Org. I wanted to send you a note to let you know I will be taking a short (I hope) hiatus due to some physical problems but will be checking in here and there to see how everyone is doing. One of my angels, who sits on my right shoulder,  told me to just check in now and then and I agreed. My situation is not life threatening just PAINFUL for a year now from a previous surgery. I know, that you all know, what it is to go from Doc to Doc and no one can seem to help but I now have some hope again and will jump on it tomorrow. Please, all I ask of each one of you is to do the best you can in kicking this CC to the curb. I am still rooting for you just a little quieter for now. Love to all of you~

OMG! My son from another Mum, how did you know??? You know me too well. I actually fell down 3 steps at the hotel in Montreal and caught a Montreal flu and was in bed on the ship for 3 days. Poor Mel. Otherwise it was lovely. Fell in love with Quebec and would go back there for a week. Glad to be back home. Yikes! Home Mum is ok and please give her a kiss for me!

Julie, Julie, Julie.......I knew you would kick it to the curb! What a command performance Sissie! Yea! Tumor is gone like a bad dream and I am thrilled beyond words. I would be doing my cartwheels but don't want to make you laugh too hard! Please take it easy and let everyone else wait on you now. YEA! YEA! I am sure Tup is also on cloud 9!

Thank you, Sissie JUJU. I will be thinking of yOU!

Thank you, Gav and Deb. Really getting excited as we are going on  New England Cruise with 3 days pre Cruise in Montreal. Mel got me a tiny French Dictionary! OY!

Dear Janet, welcome to our remarkable family but so sorry you had to find us. You will find the most loving and caring people in the world, right here.
I too live in the Phoenix area, in Gilbert. My husband had the CC and went to a fabulous Doctor here who has retired but the rest of the office is at Chandler Hospital also know as the Ironwood Group. I know they are familiar with CC. Other opinions are very important as different Doctors see things differently.
Being itchy can mean the bile ducts are clogged. Do you have stents in the bile ducts? What is Mayo doing for you for treatment? You really need an ONC who has experience with CC. I had gone to MDA and it is actually a Banner Hospital and when I went there I was told by the ONC I saw (for something else) that he had treated only a couple of CC patients.
What part of Phoenix do you live in? Perhaps we could  meet and talk if you like. I will be going out of town tomorrow and will be back September 4th. It is always a wonderful thing to meet other CC Caregivers and patients as you then realize you are not alone. Below is a site you may find helpful:

  http://cholangiocarcinoma.org/newly-dx/

Just a note to let you know I will be leaving tomorrow for a vacation and will return on September 4th. Hang in and hang on and I will be wishing and praying for some good reports when I get back to my home here!

Dear Cookie, just a note to say I am always thinking of you and as we all know stable is a very good word.  Have you tried any of the nutrient drinks like Boost or etc? Always thinking about you and of course wishing for the next scan to show more shrinkage!

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(6 replies, posted in In Remembrance)

Dear Sharon, I am so very sorry to read about Phil. Wish I did not have to say, "welcome to our new normal". I am so happy that you have decided to stay aboard to help others. I came aboard because I felt the need to pay it forward for our Board who got me through this journey and it makes me feel so good and I also know Teddy would want me to do this. I promise you that one day all the tears and memories will only turn into happy tears and memories. I a, sue Phil is very proud of you and I know you will feel his loves always around you.

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(6 replies, posted in Announcements)

Hi our Computer Hero! Working for me....thanks!

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(5 replies, posted in Introductions!)

Dear Julie, great post and powerful words from a patient's point of view of the Caregiver. Almost every time Teddy asked for something he would apologize for putting ME through so much, even if it was just a scrambled egg! Sometimes I thought that was worse to hear than nothing. I would do it all again without his apologies if it would bring him back. Being a Caregiver is not easy, I think, mentally.  And that is why we handled it with humor. Honestly, the humor really helped us both. Probably could have written a TV Sit Com from things we said and did.
You know, Sister Julie, I will be cheering for your Ablation like never before. I know you wanted this and girl, you fought like crazy and got it! Best of luck and I will be thinking of you!