joni
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Michelle –
My husband, Mike had intrahepatic cc and also developed ascites. One paracentesis was done, and then his physician said insertion of an abdominal drain would be kinder and less painful than a paracentesis on a regular basis. He did pretty well with it, and we utilized the drain for about three months. I drained the fluid here at home. The nurses at the hospital will teach you how to do this, should you decide to go ahead with this procedure. Please let me know what else I can do to help you, and know that you and Dirk are in my thoughts and prayers.
Joni
Karen –
Hospice is a difficult decision, but when the time comes, it is the right decision. Your Mom may have more fight left in her than you think she does…but she may be ready to let the Lord take her home. These last few days or weeks will be very special to all of you, and the memories made will sustain you forever. We went through this with my husband Mike in April, and while it was so very difficult to accept that his time on earth was very limited after only 57 years, I was determined that that last act of love I showed him was to help him to have a peaceful crossing over to Heaven. He died with a smile on his face, so I know we accomplished that…and I know where he is and that he will be waiting for me at the gate for all eternity. My thoughts and prayers are with you and your family. Please know that all of us on this website are thinking of you.
Joni
Jules –
This is awesome! Cholangiocarcinoma is a global disease, and you will represent us well! Thank you!
Joni
Amilcar –
I think when we don’t hear from people, either life is going well and we try to soak that up, or maybe it is just overwhelming because things aren’t going as well as we’d like them to. However, we are all here in the good times and the tough times!
Joni
Marianne –
Our experience with hospice (and it was a hospice house) was so positive. Crossing over to Heaven can and should be as easy as possible. When it was time for Mike to go, I was determined that the last act of love I showed him here on earth was to help him have a peaceful passing. I believe that was accomplished. He died with a smile on his face.
Joni
Peter and Bill –
Thank you for sharing these wonderful, miraculous stories with us. You give hope to every single person here!
Joni
Fatherson –
When we don’t know what to pray, or cannot put our thoughts into words, the Holy Spirit intercedes on our behalf, and offers up our prayers to the Lord. The Lord hears our groans, which is sometimes all we can get out. From the experience of my husband’s diagnosis and battle with cholangiocarcinoma, my faith was strengthened, and it was strong prior to his illness. Your faith WILL sustain you during this difficult time, and we are all praying for you and your family.
Joni
Marylloyd –
I understand so well what you are feeling right now. I lost my husband of nearly 30 years in April to cholangiocarcinoma after a 16 month valiant battle. And it is very, very difficult. I experienced a tremendous amount of anticipatory grief, as I believe you are. We are never prepared to let go of our loved ones. Just enjoy every moment you have together and make lots of memories, for they will sustain you. Put one foot in front of the other and just do the next thing – whatever that is. Take life moment by moment, hour by hour, and day by day. I can’t say anything that will ease your load, except that I do truly understand, because I have walked in your shoes. May God be with you and give you strength, and may you know you have many friends on this website.
Joni
Maridiana –
I would suggest finding a hospital/medical center with expertise in chemoembolization. The University of Nebraska Medical Center in Omaha, NE is one of the best places in the U.S. for liver.
Joni
Hi Maridiana –
My husband, Mike had chemoembolization twice for cholangiocarcinoma in February ’06 and March “06. There was some tumor shrinkage and the procedure “held” the disease for about eight months – he was monitored by MRI’s.
Joni
Dear Jules,
I am so sorry to hear about the loss of your father. He fought so very valiantly…and you fought hard for him, too. May you find peace in the wonderful memories of your lives together here on earth. So what do you do now?…just “do the next thing”, whatever that may be. Just keep putting one foot in front of the other. The gut-wrenching anguish will subside as time goes on, and the warm loving memories will flood your mind and heart. While your Dad’s time here was far too short, remember that you will see him again for and in eternity, when your mission here is complete. And you will here him speak to you! My thoughts, prayers and love are with you. We hit the 5 month mark today, and we just keep doing the next thing.
Love, Joni
My husband Mike (age 57) died on April 27 after a very hard fought and valiant 16 month battle with cholangiocarcinoma. He was a cryptanalyst in Viet Nam in 1968-69, and was stationed in Phu Bai, which was one of the most heavily sprayed areas (Agent Orange) in Viet Nam. I am working with the VA for DIC benefits. The VA admits to eleven diseases caused by Agent Orange. Cholangiocarcinoma is not one of them. However, please check the list (VA website) because your loved one may have one of the 11 diseases as an underlying cause of disease or death, which will help your case.
Regarding Agent Orange, Viet Nam and disease…your loved one MUST have had feet on the ground IN Viet Nam for consideration.
If I can be of assistance to anyone, I will.
Joni
