Hello everyone! I haven't posted much, but I've been a frequent visitor over the past year. You all have helped us in many ways, just by reading your posts.
My husband James was diagnosed in January '03 with cancer of the tongue. In Feb., he had surgery (partial glossectomy with reconstruction using a flap from his forearm); followed by 7 weeks of radiation with 3 treatments of Cisplatin. He came through all of that remarkably well and we were very hopeful.
Then, in August, we learned that the cancer was present in the opposite side of the tongue. We were given no good options. Surgery would take his remaining tongue, as well as the ablility to speak or eat. At 31 years old, this was not a way he wanted to live his life. He chose to try some palliative chemo, which we started in Sept. (carbo-taxol).
He had 3 doses of that, with no success in lessening any progression or alleviating any symptoms. He had a trach put in on 10/16 and 2 weeks ago, we switched from carbo-taxol to irinotecan. His first irinotecan treatment went OK. However last weeks' has hit him like a truck. He has vomited all weekend, and at less than 100 lbs., this isn't something we can continue. Going back to the oncologist on Thurs.
We have started hospice services and they are wonderful. We have a very supportive family and a awesome church family that have kept us uplifted through all of this. Our faith is very strong and we have continued to trust God to keep us going.
Things have just changed a lot over the past few weeks. James cannot talk (due to trach and swelling of the tongue) and this brings a whole new set of issues to the table as I struggle to keep up communication while he wants to retreat. We have a 15 month old son that demands so much energy, too. My Mom died of breast cancer 6 years ago and although she had been sick for 2 years, her death was "sudden"; nothing like this.
Sorry this is so long, I just needed to get a lot out I guess. I would love any words of wisdom anyone might have to share. Thanks for listening.

Bless your heart. You've been through so much. In no way can I offer words of wisdom. Except to say that I will say a prayer for you and your family. I have two boys.............I feel your anxiety. I lost my aunt, grandmother and mom....all within two years, but I feel them all the time. Close your eyes and count.....10 to 1.
It's something that I hold very close, and I hope it helps you.
Mandi

Dear Kaycey,
My heart goes out to you as you guys deal with this heartbreaking illness. I, too, have a great church family and God does comfort, however, it's so hard not to be overcome with fear and loneliness during these times. As a caregiver myself, I surely understand your pain.I will definitely keep you and your family in my prayers.
Debbie

Dear Kaycey,

I am at a loss for words to give you. I can let you know how alot of the members on this forum share in your fear and pain. This is a pretty tight group of survivors that will support each other as needed. You and your family will be in my prayers. Please keep us informed on how things are going. Daniel

Dear Kaycey,
Don't ever worry if you think your posts are to long, they never will be, don't ever worry about what you say in your posts, that is what we are all here for. We may not always have an answer for you but we will all always be here for you. When it all gets too heavy to carry alone please come here and take what ever comfort our posts to you can give.
love and prayers to you all
Helen

Dear Kaycey,
I also am inept in thinking of words to provide you with comfort. You came to the right place .As a caregiver too I may not always post but have found support in all these wonderful people's words.Your husband has to come to terms with a lot right now and no offense guys aren't the best communicaters to begin with.Enjoy your son maybe the joy your husband can see through your son will help him. There are several communication devices maybe if you get one your little boy can have talks with his dad. It's very entertaining for a child . I work in a hospital although i work mental health thereis another side where freguently i see young people with these machines some with there children on their laps. I wish you all the best. You'll find the strength somehow.
Take care
Diane

Dear Kaycey,
I just read your post and I wanted to tell you how I am impressed by your strength.They say god never gives us more than we can handle but sometimes I think that we come really close.I wish you and your husband and son all the luck in the world.God bless you.
Patty