lainy
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Marion, this old face is already on in a picture with Teddy. My hair is dark (ha ha) and I am wearing a red dress. I can either put our names on it which I didn’t do or send a picture of me with white hair! Ha, Ha
Beautiful!!! I have one thing to say, “everyone get homely and ugly as CC seems to want just the most beautiful people in the world.” I hope they are all healthy and happy now and hanging around with each other!
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.
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!
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!
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.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!
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.
