mlepp0416

Welcome! I’m so happy to hear that they are starting you on chemo after your successful resection. My husband’s doctors did not ‘think’ he neede chemo cause they had clean margins when they did his resection. I wish I had INSISTED on chemo! He too had issues after his surgery, one type of infection after another, live bile leaks, drain tubes (2) for 7 1/2 months after surgery.

Because he did not have chemo after his successful resection, he had a great 18 months, then started turning yellow, and another tumor was found and that one was inoperable due to it being wrapped around the hepatic artery. They gave him less than 6 months, but after radiation and chemo he lived another two years and his body gave up on 11/20/2011.

My thoughts and prayers are with you and your family. Make sure that your docs are diligent on the blood work, the scans watching for new tumors and take all the chemo that they are willing to give you. Tom’s chemo was at first oral (xleoda) then IV (Gemzar and Cisplatin) and the last was 5-FU which he did not tolerate well at all. The last chemo was after they found another tumor that tripled in size in under three months timeframe. May he rest in peace now that he is with our Lord.

Hugs and best wishes, I will add you to my prayer list. You are young and have that on your side!

Go with your faith and KEEP KICKIN’ THAT cancer.

Margaret

Hang in there until you know for sure. Once you know for sure (and we all know that doctors can be wrong) this is the best site to come to for opinoins, experiences, finding out what to expect, what questions to ask your doctors, where to go, what doctors you could work with and the BEST site – even if you only post to vent!

I’m hoping that they are wrong and it turns out to be something minor. With my husband Tom we waited almost a month and his VA doctors were doing dumb things like changing his diet, etc. and just doing blood work every week. I took him in to see his family doctor and he had his first ERCP in 2 days, and we had a definite answer that day, and pathology confirmed it.

Go with God!
Hugs,
Margaret

Jenny:

I lost my husband Tom on 11/20/2011 and I still feel ‘numb’, both mentally and physically. I go through the motions. I still have not ‘grieved’ as I feel that I should. I have tears now and then but not the total meltdown that I expected.

I think part of that has been because I’ve always had to be his strong when he was weak. I had to be his positive when he was negative. I could not show him my tears because it would make him more depressed. For three years and 8 months I carried my pain inside, because I knew that he was worried about me and he felt that he was a burden for me, always having to help him and to keep track of his pills, doctor appointments, arranging rides when I could not get off work….so this motto of appearing to be such a strong woman to help him get through everything has apparently been so ingrained in me that now I cannot grieve properly for him!

I don’t know where I’ll be emotionally after 5 months but I’m sure that it will be par with where you are now. I’ve always had to be the strong one in our family of 9 children, because the others were always basket cases, like when our parents passed on. I was the one who made all the arrangements, etc. Maybe it’s a genetic flaw with me.

I do know that I miss him horribly, my thoughts are constantly about him and I wonder the would of, could of’s should of’s and all of the what if’s.

I am trying to just be myself, but without Tom I feel like 1/2 a person. He and I did everything together.

Do as I do and just take it one day at a time. If you need to cry, then cry. If you need to wear his sweater or shirt, then wear it. That is what I do. I find myself sitting in his chair that he spent many of his last days in. I wear the fleece that he was wearing when he passed away every day. I remember all the good times we had together. Maybe that is my way of grieving.

Go with God and take it one day at a time, one hour at a time or one minute at a time.

Hugs,
Margaret

Joann:

I lost my husband Tom from CC on 11/20/2011. I understans what you are going through. I know that David is in a better place, just like my Tom. He is no longer in pain and is in the loving arms of our Lord.

That does not make it easier for those of us left here on earth. I know that my life must go on without him and I know that he would want me to go forward and live – keeping him alive in my memory, thoughts, and my actions. So that is what I do. I take it one day at a time, one hour at a time and one moment at a time to get through.

It is rough at times and easier at other times. You will adjust to your ‘new normal’ in time.

My thoughts and prayers are with you and your family during this difficult time.

Hugs
Margaret
(Widow of Thomas G. Lepp who passed away from Cholangiocarcinoma on 11/20/2011 after a three year eight month battle)

I went to my neighbor’s funeral for her 95 year old mom who passed away this last week. Since Tom was Catholic I wanted to light a candle for him, I lit the ‘stick’ to light a candle and lo and behold EVERY single candle was already lit. So I didn’t get to light a candle for Tom. But I did get to spend some quiet time in the church by myslef and read quite a few prayers for Tom. It was very peaceful and filled me with Joy. I also received Holy Communion which also gave me peace.

CM that poem is very beautiful, Thank you for sharing.

Margaret
(Widow of Thomas G. Lepp who passed away on 11/20/2011 from CC after a 3 year 8 month battle)

Eli:
In my husband Tom’s case, he was never in Vietnam so as far as we are aware, he had no contact with a ‘fish fluke’. He served his time in Spain, France and Germany. He was however in constant contact with PCB’s from the Green Army Paint which during his time of service contained Chroumin 6 a highly cancerous agent that manifests itself some 30 – 50 years later. Tom was only diagnosed because he was on a cholesterlol lowering drug and he had blood tests for his liver function every 3 months. In Jan ’08 his blood work was normal, and in Mar ’08 his Alk Phophaste was 10x the normal level. That was the first indication that there was anything wrong.

CC can grow slowly BUT it can also be agressive. In Tom’s case the first tumor that was discovered was a slow growing tumor. He was able to have a successful resection and had clean margins. (The only cure for CC known to date besides a liver transplant) The VA did not feel that he needed any chemo or radiation. 18 months later he presented with Jaundice. The new tumor was inoperable, his VA doc gave him less than 6 months. He had radiation and chemo. Just about three months ago they found a new tumor and it tripled in size in three months and Tom lost his battle on 11/20/2011.

We will probably never know where his cancer came from or how got it. Why was one tumor slow growing and the latest one fast growing? All I can say is that cancer is a mutation of normal cells and for whatever reason the body is not able to stop the mutation of the cells.

I wish you and your family the best and keep us posted.

Hugs,
Margaret
(Widow of Thomas G. Lepp who lost his battle with CC on 11/20/2011)

BB:

So sorry to hear of your loss. I too just recently lost my husband Tom to CC after a 3 year 8 month battle. I know he did not want to leave, and it was not him giving up his battle, it was his body being unable to contine on. Both your Susan and my Tom are in a better place, a place without cancer and all the pain, etc that CC brought upon them.

I feel your pain and I know you will keep her alive with your memories.

Hugs,
Margaret