Lorie, I am so sorry to hear about your developing situation. Please consider calling Hospice. They have medical and emotional resources that might be very, very helpful to you and Don right now.

There is a great little book called: "When bad things happen to good people". I cannot remember the author's name but it really helped me through a tough time a few years ago. Also, "On death and dying" by Elizabeth Kubler Ross (sp?). She is a widely recognized expert on the topic of terminal illness and her books are easy to read - even though the topic is very tough.

My thoughts are with you both. Tom

Lorie,

The book that Tom mentioned is by Rabbi Harold Kushner and it is a wonderful book. I read it many years ago. You might find it to be very helpful.

You both will continue to be in my prayers.

Jerry

Lorie, I, too, hope you will seek help from Hospice for both your sakes. Do you have support from family members? You are traveling a road that all of us have nightmares about. I am sending you hugs and prayers. Amy

Thank you for all your wonderful love & prayers.

I have a good friend who used to be in charge of our local hospice group, so I am very familiar with it. Unfortunately when I lovingly mentioned hospice to Don he instantly got mad and said that would make him feel "more" like he was dieing. I tried to explain it more with no success. I will try again at a later time.

I will definitely look up the book you mentioned Tom, thanks.

The radiation for pallpative therapy on his bones is now complete. We have a follow-up appointment on Monday 5-8-06, that is where the doctor tells us if there is anything else they will be able to do. But I must tell you that I am afraid Don has already given up. His mood is so down and crumpy all the time that I'm not so sure what the doctor will be able to say to help. I just keep praying that the Lexapro they put him on kicks in soon. At least the pain management group at Cedars Sinai is awesome and they have him out of pain, for the most part, and he is finally able to sleep.

Thanks again for all your support & prayers.

As for me...when I get angry and very frustrated with him I go for a ride. I actually went to the mall for the first time in months...it was great. It gave me a breather and I was able to go back to him without anger...thank you God!

Lorie

I am so glad is pain is undercontrol. I know what you are dealing with is overwhelming right now and I hope you can gain some strength from this board - I know I have many times, even if it just got me through the night knowing I wasn't alone. I know many people react the way your husband did to the mentioning of "hospice" but I think his feelings will change in time. Maybe he's just not ready for that yet. In our desperation to feel like we had control over something we mentioned it to my brother probably a little too soon. He couldn't give us a verbal response, due to the removal of his tongue, but I could see in his eyes he thought of that as giving up and he wasn't quite ready to do that yet. But withing a month, he saw we needed the services of hospice as much as he did and he never fought it. I thank him so much for that. Please focus on the time remaining and try to make great memories. Don't give up your hope for a miracle - they do happen. We didn't get our miracle, but I think that just increases the odds of others getting theirs, because miracles have to happen to somebody.
Best wishes.
Tonya

I am very sorry to hear about Don's condition. There are just no words. I hope that God brings you and Don strength during these difficult times.

Dear Lori,

As you no I also am in Hospice and am receiving no further treatment. They are a great group of dedicated people. They helped with the pain control right away. Sounds like you got the same group of Hospice volunteers!!

As far as Don being grumpy I can understand his feelings. Leaving at 40 is alot different than leaving at 56. My kids are adults and doing fine. I have accepted my fate, have no anger and just want to enjoy the time I have left with my family and friends. I am not a bible thumper but who knows that where we go is not a better place than where we are?
I will miss my family and wife of 34 years the most. Secondly I will miss all of the members on this site.
I guess I have chosen to live the rest of my life in peace. I hope Don can come to that point. Your both special people to me. I am so glad we got to meet in Vegas.

Love Ya, Danny Boy

Tonya- Thanks for your kind words. I am sorry to hear that you've already lost your brother, but I am glad he realized you & your family were also in need of care.

Danny Boy...your words ALWAYS mean the world to me. I just keep picturing your loving cheerful face the way it was in Las Vegas. That was such a great time for us. We still talk about it to this day. Everyone from the site has given us soooo much...love, support, prayer, and most of all a sense of "not being alone" in a horrible world or oral cancer.

Don & I had a little break-thru tonight after another arguement. He finally admitted that he takes out is fear and anger on me. He admitted he is just sooo angry at cancer and afraid of what death holds. We talked for a long time, cried for a long time and just held each other tight. We cried for lost hopes and dreams and remembered all the love & fun & even fights we've had.

This is not an easy road but I think maybe we are finally on the path together and I hope that we can just focus on holding each other's hands along the way.

Thanks for everyone's continued love & support,

Lorie

Lorie,
I like to think that all oral cancer sufferers are family - one of those families you wish you didn't have to be a part of, but family all the same. I think my brother and fellow suffers will be there to hug your husband, make him feel safe and show him the ropes. It's what family does and we are family. Bless you both. We love you.
Tonya

Lorie,

I am trying to catch up after a bit of absence from the neighborhood and I am truly sorry to hear the news of Don and you. I am at a loss for words and I can't even imagine what you have been going through the past several months.

Susan and I still talk often about Las Vegas, too. It was a very special time for us in many ways.

Last night I was looking over my son's graduation announcements and the inside flap had the wording we all pass around in some form of another. I would like to share it:

"Dance like no one is watching; sing like no one is listening; work like you don't need the money; love like you've never been hurt; live like today is your last."

Even in your toughest battles in this horrible war you are fighting I am praying for His comfort and peace for you and Don and that your hearts will always be filled with love.

With love,

Ed