Sunday, August 24, 2008

Home is a place you grow up wanting to leave, and grow old wanting to get back to. - John Ed Pearce

Well - our plans are in place, and barring any unforeseen mishaps - Butch leaves the hospital at noon tomorrow. We will take a taxi to Family House, where I will cook for everyone tomorrow night (I think halupki - lots of people will help me, I hope). Then - IF Butch is feeling well enough, we will leave Tuesday morning and I will drive us home. We have the portable wound vac - still in the box - and we will have it hooked up by home health when we get home. (they decided he couldn't take it off quite yet - wound is still draining in that one corner I told you about). In the meantime, they will pack it for us and I will change the dry dressing on Tuesday - that is pretty easy, and I can handle it. He can't use the portable on the way home, as it only has a one hour charge if not plugged in, and we can't recharge it fast enough while on the road. They said this is common - it will be fine until we get home. Dr. Gamblin said it is fine to come home and return for the clinic appointment (on Wednesday, the 5th).

Numbers are still all good, and therapy says he is in good shape. He still gets out of breath from any activity, but I guess that is normal - it is improving. He can get the spirometer up past 1250, and that is acceptable. In a few minutes, we will go outside - I must tell you, after I left last night, he read a book. He brought along Don Rickles book, which came out in paperback before we left, and he said it was pretty good. I think that is a VERY Good sign - he is coming back to the land of the living.

I am very excited. All of us on cholangiocarcinoma.org are composing letters describing our journeys with this horrible cancer. We are to complete them by September 15th, and are going to try to get Oprah to do a segment on it. We would like to raise awareness, and increase funding toward facilitating a cure. One of the women on cc.org wrote a poem last week, called "wish I had breast cancer", a kind of tongue-in-cheek look at all the things that are wrong with having this rare cancer. And, of course - most funding goes to the cancers that affects much larger groups of people, so we would like to make the public aware of us.

3 comments:

Sharan said...

I think what you are doing is wonderful. How many times have you and I discussed how unfair the funding is for various diseases -- Dave was so lucky that his cancer was curable, but looking into history we find that colon cancer teatment and prevention only really took off once it's awareness was brought to light - thanks to people like Katie Couric; and the lymphoma society has made terrific strides with lymphoma treatments thru awareness and annual walks that raise money -breast cancer was once a disease with a horrible outlook but thanks to the S>B> Kohlman foundation which has focused on fund raising for research, cures are now the expected. So go Joyce; do what feels right - the cure for anything starts with awareness which prompts action which prompts research. With research we find cures. You told me awhile back you were going to do something -- I think this is it. I am so proud of you.
They're coming Flashy!! 2 more days!
I am so glad you guys are headed home; you both need it. Love, Sharan

Mom said...

Hoorah - my children (Butch gets a charge out of that) are going home!! Glad they are - we have missed them here in this part of town.
Mom

Robert said...

GREAT Please call us when you get home we missed you and I will do anything you need done around the house when you get home so please call me love Robert

Alex's birthday - slide show