lainy
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Hi Judy and welcome to the best little club in the world that no one wishes to join. It must been even more scary to be in the medical profession and to find you have hit the lottery of cancers! Your attitude is wonderful and will do well for you through this journey. Teddy’s CC was confined to the bile duct valve and 5 yes 5 Oncologists have all said no chemo it will not help for his particular kind. He did have radiation last summer to shrink its return then cyber knife to zap it in December. All is well for now. You have entered a world here of wonderful people, glad you found us.
Thats what I always say. Realistically optimistic! I think that’s a good way to be. It’s kind of like being a Boy Scout….always prepared. Another one I “love” is that people are always telling Teddy he looks so good! Wonder what they would say if they could see his innards. Just being a little silly here. Loy you and you keep that spirit up!
You guys are so right! I love when I can tell good news about Teddy to give others HOPE and I am ever so grateful when I know I can come here for answers when I am down or Teddy gets some bad news. I am addicted to this site and to all you wonderful, courageous, loving people!
Hi Lisa. I think you have earned the right to say what you want on this site and as often as you want. That’s what we are all here for. You have the best attitude and a great family and that is what will get you through this latest news. Life with CC is certainly NOT boring is it? Sometimes a little boredom would be a pleasant change! Thinking of you more than you know.
Dear Steph, a Mother NEVER leaves her children. Not really. She will always be looking over you and guiding you. And in turn she will always be with you, in memories and in your heart. How lucky she was to have a daughter like you which I am sure eased her way to the end as we know it. Now your brother is not alone, he is with his mom. We are sending Prayers to you and your family.
Not sure where I am anymore so will try to tell you briefly. We were visiting our kids in Milwaukee for 2 weeks and it turned in to 3 months. Teddy had been itching and got very tired and sickly. In just 2 days he totally jaundiced. Went to my son’s family doctor he ordered tests and in 5 days the diagnosis was Bile Duct Cancer. It was contained in the bile duct valve. Doctor said if, when he got in there and it had spread he would close up. Longer he is in surgery, better the outcome. After 4 hours he came out and said I have good news and not so good. My first thought was I didn’t hear the word bad. When he went in he discovered that the dye from the endoscopy leaked on the pancreas and literally destroyed it. He needed a healthy pancreas as he had to cut the head to get to the bile duct. Good news was he felt the cancer was contained. Went back to son’s to spend a few weeks gaining strength and Teddy came down with a double ecoli infection, that almost did him in. Back to the hospital and on anti biotics for 9 days and doc decided the pancreas was good enough. Time to proceed for the second Whipple. An 8 hour surgery was totally successful. Came home to Phoenix a month later and arrived safely after his 2 tubes blew out on the plane! In about 2 weeks he had a leakage and CT Scan showed that a small hole developed at the resection. He went in to rehab for 3 weeks on NOTHING but and IV. Nothing! The doc here felt she didn’t want to put him through another surgery and if we could starve it the hole would close up. It did. That was 3 years ago. All was going good until last April when the CC returned to where the duodenum used to be. Radiation last summer to bring it down in size and in December cyber knife to kill the monster. So far so good again. You can easily see why we all call him our Miracle Man. He is now 76. Sees the ONC every other month with LABS every month. Vigilance is the key now. On the other side the cancer that returned and all the scar tissue pushed his right ureter closed and he has to have a stent exchange every 2 months for life. We have just been told the stent will not work for ever and he will have to go back on a nephrostomy bag down the road. Never in my life thought I would learn so much about something I wish I never knew! We are very strong about it, talk a lot about it and that helps.
We know what we are facing and view each day as a gift. Teddy believes that attitude is everything. He also feels his work down here is not done. We all need him too much.Hi David. Best we don’t second guess but I am crossing everything that can be crossed for you. The waiting is another grueling part of this whole nightmare. We will keep thinking good thoughts.
WOW! We are lucky as Teddy’s PET was only $150 out of pocket. Ya gotta do what ya gotta do!! Worry about it later. Please keep me posted. If you have any thing else you just keep asking.
Pam, please be careful on the roads, your mom is being taken care of but you have to take care of you! Don’t you just feel like the car knows it’s own way? We are thinking of you and praying for your family.
Hi Carol. I have one suggestion since you are in the cold East. How about going early to an indoor Mall and walking there. (oops I just saw you mentioned this) Lots of windows to look at too. One other thing that helps me. When Teddy was going through the worst of everything it helped to slam out how I feel in emails and also on this site. Just as you have done. Singing helps too, in the car. I love Mama Mia and keep that disc in the car and when driving alone I swear I belt out like Ethel Merman!
Also singing makes you feel good. This is the strangest cancer! One would think his LABS would be off the charts, yes? If you saw Teddy you would never believe what he has gone through as he looks great right now. Heck, he looks better than me and has more energy than I do. I have found the best thing to do is to go with my gut feelings. Oddly, I have done well in picking doctors and knowing what Teddy needs. Maybe it comes from having to do for the last 3 years. Stay strong and unfortunately you too will learn what is working and what is not as each one is different. Keep us posted.One more thing, Jill. I just found out there is a Cancer Treatment Center of America in Tulsa, OK. They are excellent if you need their help.
Teddy takes Prevacid for his stomach every morning to help in digestion. Other than that no meds! You will find in my posts we all refer to him as the Miracle Man. He has an other problem in that when the cancer returned it along with scar tissue has damaged his right ureter and he needs to have a stent put in every 2 months. When you fight this war you do not get a purple heart. Only scar tissue and more issues. But you must have hope and attitude and you would be surprised how that helps. Yes, all he had was scans and LAB work as there is no other way to keep the vigilance.
