Well, today was draining day and they took 7.8 liters! The record amount thus far. They counseled him today on getting a permanent catheter put in so he could drain it himself... or I could do it for him. It sounds like the ideal solution, but it greatly increases the risk of infection. He was given a DVD to watch, so I will have to check it out for him.
Bill told me last night he was getting the urge to cook again. He hasn't been in the kitchen for about a year. Even before he was diagnosed, he stopped cooking because he always felt so sick. (Hind sight is 20/20.) I can tell that he is feeling much better being off the trial medications. Another clue he is feeling better is that he went to the grocery with me today, and I spent twice the amount that I usually do. Everytime I turned around he was adding to the cart. He is actually excited to eat! A HUGE step! He is calling the City of Hope tomorrow to discuss if/when he will start the drugs again. I think he has a plan that has been brewing in his mind, but I have not figured it out yet. It is hard to tell someone you love with all your heart that it is OK if he wants to stay off the meds. Quality far outweighs quantity...
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6 comments:
Jackie....I hope the docs can figure out a way to diminish the side effects, yet keep him on the trial. Sounds like lots of decisions will soon be made. My prayers are, as always, for you and Bill to garner the wisdom to make the right decisions. I know you will.
Hi there you two, you are right Jackie, quality outweighs quantity by far, but it sounds dumb coming from me, who is not standing there in your shoes, but it will be more satisfying for the two of you if Bill is feeling well enough to spend time with you and Tyler. I hate that this is happening to you all and I wish that I could take it all away from your family...hang in there and make the best that you possibly can of each and everyday. We will continue to pray each and every day!
love you all!
Julie
Jackie, I just wanted to let you know that I check your blog everyday and although I rarely leave a comment, I'm thinking about you always. Most of the time, I just cannot find the words to express.
Jackie,
Please tell Bill if he needs an assistant in the kitchen, I can hold my own.
I would love to put on a dinner party with party with Bill.
I don't have anyone to invite, so I would love to assist, serve, bartend or wash dishes to help Bill with a stellar dinner party.
Just let me know!
Todd
Jackie-
Tell Bill to take a night off and go to a restaurant tonight. If he is up for it, several people from the class of '85 are getting together at Joe's Crab Shack at the Puente Hills Mall at 6 PM (Saturday). We'd love to see you both.
Delora
Funny...Brian stopped mountain biking when he got sick and at the time I didnt know what was wrong...amazing what signs I wish I would have read into more. I would look into draining this fluid yourself. If it makes him feel better!!
Hope you are well
Anna Hogan
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