Topic: Sharing Our Story

I've read many posts and I've decided I want to share our story.  My husband is 37 years old.  We've been together 7 years and we have been very happy.  He's my best friend I can't imagine life without with.  Or I guess I should say I can and it looks very lonely and bleak. 

My husband was diagnosed at the end of May 07 with non-resectable stage 4 cancer.  It came as a major shock for us.  He'd been having pain since January but he has Ulcerative Colitis and the Dr's don't really get upset when you have pain because he always has chronic pain.  Anyway in May it started to get so bad that he'd be writhing in pain at night and vomiting.  Finally they discovered he had Sclerosing Cholangitis and put in a stent.  Then that got infected a week later and they did another ERCP and then they decided he was at risk for Cholangiocarcinoma.  The Dr's decided to do the Whipple but discovered that the cancer had already spread to far.  They did a gastic bypass and closed him up.  Since then he has tried palliative chemo and stopped.  He has also has 4 more ERCP's.  Right now I'm waiting for the surgeon to look at his Ultrasound and phone us to let us know if he can have another.  It's so hard to wait for the phone call. 

It's hard to watch him get weaker and weaker.  It's hard to watch him be in so much pain.  He's not really able  to leave the house.  He's not able to eat very much.  We have a six month old baby.  She was born a month before the diagnosis and I'm so sad that he's not going to get to watch her grow up.  I'm sad that he can't hold her but I'm glad that he can still smile at her.  There's so much more to say but maybe that's enough for now.

I enjoy reading the posts on this website because it makes me feel less alone.  I'm sorry that all of you are going through something similar.

Re: Sharing Our Story

Dear KD...  Thank You for sharing your story as hard as it must have been.  It really sadden's my heart to hear of such a young man being grabbed by this horrible disease.  KD if your Husband is able maybe he can  write a letter to his little girl and put it in a time capsule for later.  Some of Daddy's words may be comforting when she is old enough to fully understand.  This is sort of away for him to be a part of her life later on.  It sounds like your husband has and still is putting up a couragous battle.  Prayers coming your way.  Please don't hesitate to post anytime you wish.  God Bless !   Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Sharing Our Story

Dear KD - I wish I could say something that would make you feel better.  I can only send you a big hug and prayers.   I have typed this reply several times, erased it, typed it again, erased it.  I will just say that all of us are here for you anytime you need to express your feelings.   I still believe in miracles even though I didn't get the one I wanted but they still happen.  Don't give up.
Betty Johnson

Re: Sharing Our Story

Thanks for your replies.  He is writing a letter and that makes me happy.  : )
I haven't given up.  I still have hope but now I hope for different things.  I hope that he gets a stent so he's able to go another month, I hope that he has good pain control right to the end.  I hope that he gets a little bit of enjoyment out of each day left.  But sure a miracle would be nice.

Re: Sharing Our Story

Dear KD,
I will add your husband to our prayers. I hope you can get the pain under control so he can enjoy the time he has.  Don't know if you are in hospice yet or not but they are usually great at pain control.  That is the only thing my husband is worried about when the time comes is the pain control and our internist said he will take care of that.  I'm pretty sure in this day and age that death shouldn;t have to be painful.  God bless you and your precious little one and give you strength to be there for your husband.  Mary Anne

Re: Sharing Our Story

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