lainy
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Hi Ann and welcome to the best little club in the world that no one wishes to join. We were in Milwaukee when my husband was diagnosed with CC in the bile duct valve and we really lucked out with Dr. Lyle Henry at Columbia and St Marys. He performed a Whipple on Teddy and he was an excellent surgeon. I would also suggest Mayo Clinic in Rochester MN. one of the best. I am sure you will hear from quite a few of our caring members. Please keep us posted.
Carol, you sound like a wonderful woman and Charlie is so lucky to have you and your fabulous children helping him through this rocky journey. When you talk about his color, I have to chuckle as when Teddy first turned totally yellow and the doctor said you are really jaundiced I said, “you know I don’t like you in yellow” Funny how we think of these inane little things. I am sure your sense of humor has helped you have the good attitude to get through this challenge.
Our prayers are with you and your family and we hope Charlie’s road is not bumpy. For the itching we used ice bags and Sarna cream. Please keep us posted and stay strong.
P.S. You are so right about the caregivers. I just let myself go these last 9 months and went to the doctor yesterday with high sugar counts, bursitis in the shoulder and bad yeast in the tummy!!! Hopefully I am on the right track now to taking care of myself!!! You take care also!So very sorry to hear we have another member of this best little club in the world that no one wishes to join. What you are feeling is normal for such a huge diagnosis. Not being from the East Coast I can not direct you where to go but I am sure you will hear from others soon. I can tell you that I would definitely get a second and third opinion if that is needed. Go until your gut says this feels right! You will find the best, bravest, kindest people in the world right here. Vent all you want and please keep us posted.
Hello Amanda and welcome the the best little club in the world that no one wishes to join! Brave is the word. The most BRAVE, caring, encouraging and nicest people are all right here! We invite you to ask away, give advise or just vent. Hope the road ahead stays calm for you and please keep us informed.
Dear Carrianne, that is such wonderful news and our prayers are with you and your mom for the shrinkage to begin! It certainly is a big help that your mom is a fighter as we know attitude is everything! Our thoughts are with you.
Hi Vincent. So sorry to hear about your mom’s turn. You have certainly done a great job and are a fabulous patient advocate! Your mom is so lucky to have a son like you! When Teddy had itching we found Sarna (Walgreens) to help the best. Its pretty powerful and cannot be used long but it did help. Also ice bags where ever it was itching. We are praying for her relief and that things take a turn for the better.
Hi Jan. I can agree and connect with everything you have said. Teddy is 3 1/2 years post Whipple and his CC returned last April where the duodenum used to be. He had 5 weeks of radiation over the summer and Dec 22 he had 3 Cyber Knife Treatments. As far as we know the monster is shriveling up and dying! This month’s LAB work was good and we see the ONC tomorrow. Every time we go to the ONC we look around and feel so lucky! Its so true that no matter how bad you feel you have it, there is so much worse out there. And yes, we try to enjoy every day and we get lots of family visiting from out of town because like you say with this CC who knows! Here’s wishing Charlie to stay on the good side of the road.
Hey Tony. The only thing for sure with this monster is that sometimes 2nd and 3rd opinions are needed. If, in your gut you don’t like the answers you are getting try another doctor just to see what he says. Its good to be angry as you have to be your own advocate. Fight for yourself until it feels right! We have all felt like you and have changed doctors and treatments when we have felt it just was not the right fit!!! Vent all you want we are here for you!
Hi Kris. The problem with the doctors would be like a 5 minute segment and we would be done. I am trying to pick a venue where we could possibly get the whole hour. Has anyone heard that Montel will be back? I had heard yes then no.
Good, about Dr. Phil but doesn’t he just deal with psychological problems? I spent the morning deleting Oprah’s name from all the letters. Would also like some feedback if anyone else wants to e mail a letter to me to add to the pile.
Other wise I will send these in to Ellen and Phil next week.Hi Kris. How barbaric not to give you something for the ERCP. I used to get them all the time for ulcers before I divorced brand X. In those days they at least gave a valium drip and sprayed the throat with a numbing spray. These days they put you in a twilight. You poor thing. Every good thought I can muster is coming your way!
FYI: I sent all the letters registered and did get a receipt. Perhaps people just bury their heads when they do not understand, wish I had an answer.
YES, DITTO, Darla. I also want to let you all know that I have sent another letter to the OPRAH show last Friday, but so far no results. I still have copies of the 35 letters and am trying to come up with another venue. In the meantime since I had so many responses to the letters I would be more than happy to receive more from any newcomers. I was told that writing the letter was very cathartic. So, anyone wishing to have their letter as Caregiver or Patient involved with CC please e mail your letter to me and I will add it to the bunch. I still cannot figure out how ANYONE reading these letters would not even respond.
