Mar 19, 2012 - 2:18 am
Tomorrow is a day that I have long feared and dreaded....David will get his first dose of Avastin. I know that other drs and other people don't have the same feelings about Avastin that I do...but I believe that our oncologist uses it when the time is desperate. Well, we are pretty desperate. We've been home from the hospital since Friday night, and it's been pretty up and down. David sometimes talks and makes perfect sense, and other times, he can't even answer a simple question. He's super shaky and weak, but the thing that gets to me the worst is his odd behaviors. He can't complete a task. He turns the lights off and on, he goes into the bathroom to use it, and he doesn't come out until I go in and get him. I have to take him by the hand and lead him back to bed. He stares at himself in the mirror with a totally blank look. When I ask him what he is doing, he said, "I'm sorry that it's so hard to for me to answer you." When I ask him why he taps or rubs his face for so long, he says he doesn't know why. He's wetting the bed off and on. He has an obvious left side deficit, like he had a stroke on that side. When I kiss his cheek on the left side, his face feels...different. Flaccid. He holds his left hand funny, all soft with the fingers curled slightly. When he walks, he lists to the side and is very off-balance. He's lost his left side peripheral vision.
The thing that really broke my heart, that really messed me up, that I can't quit crying over, is when I went in his bedroom to check on him when I thought he was napping, and he had a tear trickling down his cheek. I can't even type it without crying and feeling like I am dying inside. I don't know if I will ever get over the way that made me feel.
We expect the Avastin to help relieve some of David's symptoms. It should relieve some of the swelling. Our dr said that Avastin is basically a fancy steroid. But he also told us it helps prevent angiogenesis...the formation of blood vessels that feed the tumors. I don't know if it will work well enough for David to slow the growth of the tumors. The tumors really spread a lot since that last BBBD treatment, during the time that David was recovering from the cellulitis/blood infection/blood clots. I think it will help for a time....but I don't know for how long. I just hope it helps. I'll take whatever time we can get.
I sleep with David every night....there's no way I would leave him alone for an entire night. He gets up by himself to try to use the bathroom and it's totally unsafe. So I'm lying in bed right now, typing this, and David just now got up and got his PS3 out and he's' hooking it up to our TV so he and I can watch "The Office" on it. I have no idea how to do that kind of thing....but watching David, it looks like he might be able to hook it up. I can't believe he can do this. But this is how our life is. One minute I think he's totally out of touch, the next minute, he seems okay. I am blown away...he's digging through a nest of cords and controllers, looking for the one he needs...
Does anyone else have these kinds of experiences? I don't know if this is the way things deteriorate or if David is not as bad as I think he is.....
He just downloaded an app on his iPhone that lets him use the phone like a flashlight. I am amazed......
He had me take a break from this post and plug in some wires for him. He told me where to put each wire. He's got it all hooked up and working. I was shocked and amazed and happy. He looked at me with no expression and I said, "Aren't you happy that you remembered how to hook this all up?" And he said, "Not really. It wasn't that big of a task." He made me laugh.
Forgive me for being negative...but in five minutes from now, he might forget how to turn off the light. That's how things have been going.....but for now, I am going to watch "The Office" with David and maybe even laugh a little. "The Office" is kind of our thing....I'd never seen it but David loves it and he got me started on it, and now I'm hooked. Just because.
I'll keep you all posted on how the Avastin works for David.
Love and blessings,