New Plan of Attack!!

So in the words of Emeril: We're KICKING IT UP A NOTCH!

So what does that mean? Well, Daddy's doctor didn't like what he saw on this month's MRI....it basically showed that the little pea-size satellite tumor that couldn't be removed in surgery appears to be growing....just a bit, but any growth is bad. So Temodar is out. New treatment in....

The good news is that Daddy is getting a very new and promising drug protocol. Well, the drugs themselves are not new, but the combo and the use for brain tumors is. Duke University has been doing some trials on this treatment, and results have proven promising. So promising that this has become an accepted "next stage" treatment after regrowth occurs during treatment with Temodar, even though the FDA hasn't approved the drugs for brain cancer treatment. We're very thankful that there wasn't even a QUESTION whether or not Daddy gets this treatment. I know from my internet research that quite a few people have problems with their insurance over this.

Now's the bad news: This is not an oral medication like Temodar. He's taking two different drugs, Avastin and CPt-11. Both are infusions. Which meant Daddy has to spend three hours every other week getting this done. He had a port installed in his upper chest/front of shoulder area. He's not really thrilled with it. His first treatment was today, Mary Anne said he watched a John Wayne movie during treatment. Tomorrow and the next day will bring the side affects, hopefully not too bad. He's used to feeling tired from chemo, but we're hoping he won't have too much of the other stuff, like nausea and intestinal distress.

But enough about that! Let's keep a good thought!

Daddy and Mary Anne and I spent an interesting day together last weekend (the 8th) attending a Brain Tumor Workshop here in town. It was a full day of treatment updates, caregiving tips, nutrition, stress managment, and inspiring testimonials of fighter/survivors. The very best part was at the end. We almost missed it, we were all really tired and overloaded with information, ready to go home. The presentations were running long, and Mary Anne was keen on getting home and I have to admit my tailbone was killing me because of the chairs. But I knew the last was going to be important for all of us, so I said we needed to hang in there. We were all so very glad we did.

When we went back into the room after the last break, we got seats up front. We see a microphone and a guitar. A tall thin guy walks in with a tiedye do-rag on and sits down and picks up the guitar. I didn't look at daddy's face, but I knew he was thinking "what the heck?".

He started picking riffs on his guitar, talking at the same time, using the guitar almost as an extension of his own voice. He talked about being diagnosed ELEVEN YEARS AGO with the same type of brain tumor Daddy (and many of the other folks there) has. As he told his story, he went through every stage of grief and ultimately his new outlook on life....all punctuated by music, songs he had written to inspire himself and others. The highlight for me was what he called a "song with no music". He said "some people might just want to call it a poem" but "I like to call it a song with no music". He read it aloud, not using his guitar this time, but just using his voice to create the mood of the "song". It was the words that hit me though. I felt like he had reached right into Daddy's brain and extracted every thought and feeling he didn't know how to say. I'm pretty sure Daddy felt the same way, if the look on his face was any indication.

I won't post the words, because they are copyrighted. But I will send you over here to read them at David M. Bailey's web site. You can listen to a few of his songs at the web site, and read a little bit about what he's all about. He's an amazing performer, Daddy's calls his show "intimate", which is exactly the feel Mr. Bailey is going for. If you ever have an opportunity to see him, you need to go!

Thank you for coming back to check on Wes' progress. Please drop a line to his e-mail if you wish, let him know how you are!