Nov 22, 2011 - 3:11 am
I don't know what I posted here on this site about how David is doing since the BBBD. My memory is just toast...I think partly from stress. I am going to start new threads more often because I can't find where I posted what about David. Anyway....
David and I came home from the hospital on Saturday. We just took it easy and and kicked back at his apartment all afternoon and evening, napping off and on. David was really wiped out from all the sedation that he got during his hospital stay. I get worried and wonder if he's acting loopy from the sedation or if they did something to him with that treatment. But then he was so much better on Sunday. Here's a copy of what I posted on FB:
Now we are watching a little football and playing around on our laptops, and after we recover from breakfast, we are headed out to do some errands. It's a beautiful crisp cold day here in Portland...bright and sunny and cheerful. After our errands, we will do some cleaning and laundry, etc. Then maybe a nap, then...we will see!
I hope you are all enjoying your Sunday too!
After we ran those errands, David was pretty tired, so he took a nap and I cleaned and did laundry. Then he got up and we ordered pizzas and picked them up and ate dinner together. It was altogether a lovely day. After dinner, one of his friends came over to hang out with him, and I headed for home.
Now today I talked to David on the phone and he's doing pretty good. Still a little tired, and he has some tenderness and some wicked, bloody bruises on his groin at the two catheter insertion sites. His port is pretty tender too. But overall, he's feeling pretty good. And today another friend stopped by with some burgers from a restaurant that they both really like, and they had lunch together.
So....the BBBD went really well. Before David was admitted, I could barely stand the thought of what David was going to go through. He had been so terribly sick last month, and he'd only had intra-arterial chemo. This time they added the disrupter and two different shots of sodium thiosulfate (STS) to prevent hearing loss. The STS makes people really, REALLY sick. I couldn't imagine David being sicker than the time before. But this time they gave him a mixture of really serious anti nausea medicines, including Haldol, and it totally knocked him out. He was basically unconscious from the time he got back from surgery (around 11 am) until about 11 pm, and then he only woke up for a few minutes and then he went back to sleep. The nurse woke him up again at midnight and he ate a little soup but I had to feed it to him. He was so out of it. But I think it was for the best, because he never threw up, not one time. and he never got a headache either. Overall, this treatment was much better than the first time David had intra-arterial chemo. It's no walk in the park, but we are so very grateful that David is able to get the BBBD treatment. We are hoping that David can spend Thanksgiving Day with the family, but the hardest days after treatment are days 7-10, and that's right when Thanksgiving falls for David. So we will see....we are just taking it one day at a time.
Here's a link about the BBBD: http://www.ohsu.edu/xd/research/centers-institutes/neurology/blood-brain-barrier/research/clinical-progam.cfm If you google "blood brain barrier disrupter" you will find more sites about the protocol.
David also has had two of those iron contrast MRIs too.
We are praying that this treatment works for David and shrinks his tumors and keeps them from coming back. I'm scared for what tomorrow may hold, but I have some hope in my heart.....
Love and blessings,