lainy
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Welcome, Jill to the best little club in the world that no one wishes to join! My husband at the age of 73 had a Whipple 3 1/2 years ago. It is the LARGEST surgery to the human body there is. Not life threatening but huge. One reason for the long recovery. Teddy’s was contained in his bile duct valve. The only thing we know for sure about CC is that it does return. His returned last April where his duodenum used to be. They had removed his gall bladder, his duodenum, the head of the pancreas and rearranged the innards. After a summer of radiation to bring the tumor down to 6cm he was then eligible for cyber knife in December, to kill the monster! The protocol following surgery has been to see his Oncologist every other month along with LAB work every month. Important is his bily rubin and CA19-9 counts. I have many posts about him and you can look it all up under Lainy. We opted not to have chemo as 5 cancer specialists said it would not help his kind of CC. Your doctor can go to bat for you on the PET Scan. Teddy also has CT Sans every 6 months. It was this watchful stance that caught the cancer quickly when it returned. It would not be unusual for all the diagnosis they made to get to the CC. It is one of the hardest to diagnosis. Read up on this site as much as you can, although the Whipple is more rare than most of others it is still considered Bile Duct Cancer.
Please feel free to e mail me personally if you would like. Don’t know where you are but it sounds like your doctor is not unfamiliar with this. Please stay in touch.Here is another one for you Patsy: Comfort is wished for you with better days ahead.
To my dearest family, some things I’d like to say.
But first of all, to let you know, that I arrived okay.
I’m writing this from Heaven.
Here I dwell with God above.
Here, there’s no more tears of sadness;
here is just eternal love.
Please do not be unhappy just because I’m out of sight.
Remember that I am with you every morning, noon and night.
That day I had to leave you
when my life on earth was through.
God picked me up and hugged me
and said, “I welcome you.
It’s good to have you back again,
you were missed while you were gone.
As for your dearest family,
they’ll be here later on.
God gave me a list of things,
that he wished for me to do.
And foremost on the list,
was to watch and care for you.
And when you lie in bed at night,
the day’s chores put to flight.
God and I are closest to you…
in the middle of the night.
When you think of my life on earth,
and all those loving years.
Because you are only human,
they are bound to bring you tears.
But do not be afraid to cry:
it does relieve the pain.
Remember there would be no flowers,
unless there was some rain.
One thing is for certain, though my life on earth is over.
I’m closer to you now, than I ever was before.
There are many rocky roads ahead of you
and many hills to climb;
But together we can do it by taking one day at a time.
And now I am contented….
that my life was worthwhile.
Knowing as I passed along the way
I made somebody smile.
So if you meet somebody
who is sad and feeling low;
Just lend a hand to pick him up,
as on your way you go.
When you’re walking down the street
and you’ve got me on your mind;
I’m walking in your footsteps
only half a step behind.
And when it’s time for you to go….
from that body to be free.
Remember you’re not going…
your coming home to me.Dear Carol, welcome to the best little club in the world that no one wishes to join! You are so right that no one can believe or understand what our loved ones go through. Pam was right on about it all but I would just like to add that for the tummy we tried Maalox and it worked quite well. Also for burping Brioche, the Italian remedy like Alka Seltzer but better. Its in a blue plastic bottle at Walgreen’s. You must take care of yourself as we can wear down very fast. I found a good out let was to get in the car, drive down the street and yell or cry. What ever. But it was my private time. We are here for you to ask, rant or cheer. Please keep us posted.
Dear Lucian, we have to read up on this monster like never before. Then we weigh the pros and cons and in the end we have to go with our gut feelings. Thats the best we can do. Have you ever had a second opinion? I would probably, very quickly get a second opinion. Good luck to you and please keep us posted.
Dearest Valerie, my heart is aching for you. Jeff is a wonderful human being. He has helped me and Teddy through the last 3 years. He has given so much to everyone. How lucky he has been to have you help him through this rocky journey. We all know you very well and you just come on and talk to us when ever you feel the need. Not having gone through this I can only guess at the excruciating pain. Perhaps the time has passed to hold it in. The other day a post mentioned that it is pre-grieving. I once told Jeff your tears were tears of love flowing for him as most people never know in their lifetime the love the 2 of you know so well. We watch daily for some sign of Jeff so thank you for today. Prayers and love to you both.
Welcome RUSYN to the best little club in the world that no one wishes to join.
My husband had a Whipple 3 1/2 years ago at the age of 73. He actually had 2, the first one was aborted after 4 hours. His cancer was contained in the bile duct valve. You can see it all under Lainy. It is a tough road but sounds like you are doing very, very well. CC is a monster with a mind of its own. They did not give Teddy chemo as they said it would not cure it and would not give him quality of life. But I know there are others on this site who have had it after a Whipple. We don’t have any regrets. We know nothing for sure about CC only that it does return. Now, Teddy sees his Oncologist every other month with LABs every month. One has to keep vigilant. It did return in April where his duodenum used to be and pushed his right ureter closed so that is also a problem. However, we got the cancer OUT with cyber knife in December. First he had to have radiation. All is good right now. You have come to the right place for questions or just plain old venting. Continued good luck to you. Please keep us posted and jump in at any time!Bless the solitude of a car! I think you made a wise step and I am sure you feel that way as well, having seen your father’s face. It is very hard to trade places with our parents. That little girl comes out in one and we feel almost a guilty feeling. I would have done the same thing to ease things up for the other parent. Someone has to step up and be a hero and you did just that. Hugs to you and prayers to your family! And…ramble all you need.
Dear Carol, I wish there was some magical potent I could send over to you. Perhaps along with the memories of what used to be and seeing what is now is the fact we are totally worn out care givers. We are no where at your point and some days I just want to have a pity party. Of course I don’t and it passes over. Maybe you need some relief like going somewhere quiet in the car and just letting loose. Wish I had some word of wisdom other than to tell you we are here for you to vent. Thinking of you and yours………………
You sound like a most lovely person and I think you have the right attitude. Everyone needs a helping hand now and then. This site is a good place to vent, question, care. Yes, you are young but lately we have been getting quite a few people under 40. In fact we have had some in their 20’s. Stay strong and again welcome to your new family!
JenzoB and welcome, sorry you had to join our elite club. I am sure its very hard to communicate about this “over the water”. Personally, the first thing I would do is change Oncologists. It sounds like she is with the right doctor now. I have seen his name on this board before. We have a wonderful search engine on this site as well as many courageous, caring people whom I am sure you will be hearing from. Good luck and please keep us posted.
Dear Carol, welcome to the best little club in the world that no one wishes to join. The whole bile duct tree aids in digestion and after a surgery of this magnitude digestion problems do occur. I know my husband takes a Prevacid every morning to help his digestion during the day. Some foods he just cannot tolerate and is still finding out what those are. I have never heard of removal of the bile duct. I am sure you have talked to your doctor about the discomfort and the pain in your back, yes? I know some answers will be flooding in to you from our site. Please keep us posted.
Larry you have a great attitude and that is the other half of the battle! Good luck and please keep us posted as we will be thinking about you.
Lisa, good about the good news, sorry about the bad news. Knowing you, you will turn it all in to good news. The good news being that you do have the options you are taking. Stay strong and know that we are wishing the very best for you. You go girl!
Hi Larry and welcome to the best little club in the world that no one wishes to join. My husband also had the cancer in the biles duct when we were visiting our children in Milwaukee. We really lucked out with Dr. Lyle Henry at Columbia.
Where was your tumor in the bile duct and why could they not get to it. Teddy’s was in the bile duct valve and he had a successful Whipple. That was 3 1/2 years ago. He is 76 now. The cancer came back last April where his duodenum used to be but we just got it out with cyber knife. Can you tell us a little more about why they couldn’t get to it?
