Today's appointment went well and Bill was able to fly solo for this one. He saw a different doctor (his doctor was gone) and felt like she actually spent time with him and his concerns... a feeling we don't always get from his current doctor. He lost 4 pounds in the past month, which surprised me. I really thought it would have been more than that. They are debating reducing his dose of Tipifarnib or even taking him completely off of it for awhile so he can take time to regain some strength and energy. I have mixed emotions about it - I know he needs to have a decent quality of life and I would never begrudge him that. On the other hand, what if that is the drug that is helping the tumor get smaller? Will he end up disqualified from the study if he goes off the drug and things don't look better on the scans? That worries me more than him sleeping day and night.
Tomorrow he is getting his stomach drained and to say he is ecstatic about it is an understatement. I have a training tomorrow, so Ann is going to play nursemaid for the day. I pray he notices a difference immediately and is more comfortable. We were told that they can get 5-7 liters of fluid from one draining. I am anxious to see how much they actually take out.
Bill was craving steak today, and when he craves something I usually drop everything to try and get it for him. Tonight we actually went out as a family and had dinner. It was the final hurrah before the three weeks of sleeping begins. I know Tyler also loves having Bill go with us. In fact he told me tonight before bedtime, "Daddy and I are gonna... well, we're gonna keep you. We both love you." What could I say to that?!? I thank God everyday for my little man.
We Know Better
6 days ago
4 comments:
Dearest Jackie,
We thank God everyday for all of you!
Always in our prayers and in our hearts.
My love
What a sweetheart of a little boy you have. Just goes to show what awesome parents you and Bill are.
I hope Bill can find some comfort after the draining and maybe regain a little strength before the harsh drug again.
Well, I have written a response to your blogs so many times...in my head. Usually the first word that comes to mind is "fuck." I can't tell you how many times and in how many ways I have used that exact word. I don't see it in your blogs but I know it is there...so I say it for you. Often Tracy and I are crowded around the computer reading your blogs...saying,
"remember when we partied with Bill, remember when we laughed around the table at O'Malley's in Seal Beach, remember the pictures we have together" and all I can think of is, "this sucks!" I am not even going to pretend to have some special, magical words to bestow upon you...there just aren't any. But, I will say that you impress the heck outta me as a human being and you are one amazing writer! I am glad I finally put my mental thoughts on paper...I have wanted to reach out earlier, but I didn't want to burden you with being one more person that you had to tell "your story" or one more person that needed something from you. I hope you know that I am here for you and that I will always be your cheerleader...if you say "jump" then I will say "how high?" Oh, and one more thing, "fuck!" (If people are surprised by my language, then just tell them that I am an old trucker friend...that'll get 'em thinking! hee hee)
omg tyler is really heaven sent.
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