lainy

Yep, let me add another vote for the safety pin. There is a bag with a belt for around the leg but Teddy didn’t like that. He wore undershirts and pinned the bad to that under his top shirt. Good luck.

Hi Jennifer. We never went to Mayo. Teddy was in Milwaukee WI when it happened and was an emergency. We had no choice but lucked out with the surgeon as only a couple did the Whipple at the time.
Our 2 week visit turned in to 3 months as they aborted the 1st Whipple attempt due to his pancreas “wilting” from dye that hit it during the Endoscopy.
Then 2 weeks later he developed a double e-coli infection. Then they did the deed. 2 months later we were headed home to Phoenix and his 2 tubes blew out of his stomach on Midwest. Now we laugh about it. What a mess!! Got home and 2 weeks later he developed a small hole at the resection and went in to rehab for 1 month on NOTHING but an IV in hopes that starving the hole would heal it. It did and then everything went fine.
We have a Mayo here but were advised the best was in Rochester MN (the best for CC) By that time of course it was not needed. Honestly the hardest part was the worry of finding doctors once we would come home. He was the perverbial healthy Sicilian stallion! I researched and talked to a few people and made the decision. You see I practice medicine…..it’s called my gut feeling. We feel very lucky to both have a team of the best of the best doctors here in Phoenix. We share our Oncologist, Urologist and Gastro man. If I needed to I would also use his Radiation guy. 5 different docs told him from the beginning that he would never be a candidate for chemo however, he can have radiation or cyber knife. His regime is to see the ONC every other month and have LABS every month. They are keeping an eye on his 2 new little tumors. And here we are 4 1/2 years later. I call it our Cancer Dance and I say, we are doing just fine as long as we are dancing to the same tune.

Dear Jennifer you are reading and researching and that is a good thing to start with. Sue’s is such a wonderful story and I can add my husband Teddy to that Miracle as well. We were visiting in Milwaukee and he totally jaundiced. With in about 10 days he was having his Whipple. You would not believe what he went through, not in disease but in healing. You can read about him under Lainy. And here he is 4 1/2 years later at the age of 77 going strong. Oh, it cropped up a year ago where his duodenum used to be and they zapped it with cyber knife. Now it has appeared as 2 very small tumors near a kidney and outside the liver. Nothing is being done at this point as they seem to be shrinking on their own!!! We are all dumbfounded. The Radiologist and the Oncologist believe Teddy has a certain kind of hormone that is shrinking them. Pet Scan due in March again. This wonderful site dubbed him their Miracle Man.
Remember, something new is always around the corner in some form of treatment. It helps mind and body to try to stay positive. Like I say, Attitude is everything. This is all still so new for you and it takes a little time. There are some great Center now for care but Mayo, MN. is considered one of the top.
Also Sloan Kettering and MD Anderson and a couple in California. I give thanks so many times that here we were in Milwaukee, there were only a couple of surgeons who did a Whipple, it was an emergency and Teddy was really in Gods hands. Miracles do happen!

Hi reddobie and Congratulations to your brother who is already a big survivor.
Welcome to our Family. CC is such a puzzle and with everyone being so different and having so many different kinds of symptoms and treatments it is impossible to “plan” ahead or give statistics or to know what is going to happen. Therefore we just don’t listen to statistics and none of our Family was born with an expiration date. The best is to live in the here and now. Lord knows, it takes enough energy just to do that. We have quite a few who have beat their odds by years. Be so happy that he is doing so well, enjoy all your time together and fill your life with love and laughter. Also, please keep in touch regarding his progress and know we are all cheering for him.

Dear Beth, I have everything I own crossed for good news for you & Art.

Lulu you cannot go back, you cannot dwell on what was as you now have your newest task in front of you. The road you took was not preferred but the route taken is over. You are so lucky. You have the best in surgeons and doctors now and well on your way. Let the past go, you cannot change it and save your good energy for the best to come.
CC can be so frustrating until you get an actual DX and a plan and then proceed. Good wishes and best of luck on meeting with the surgeon. We have everything crossed for your dad and of course please keep us updated.

Oh, Margaret sorry about the bronchitis but YIPPEE on the B.R. That is great news. Keep on kickin!!!

Hi Cinnamin. We will have everything crossed for Wednesday. Tell your dad that people from all around the world are cheering him on!