Thursday, July 23, 2009

I can finally be "The Decider"

It's all coming together. Yesterday I heard back from "Dr. B" who had spoken to the main surgeon at UCSF about whether it would be wise to dig back in. Conclusion? Even the UCSF surgeon didn't think he could remove too much more, and I'm probably better off starting some treatment as soon as possible. "Dr. B" also spoke with several people about their thoughts on my joining a trial involving taking Avastin and Tarceva along with the Temodar. The general opinion there was that in my case it's probably not worth it yet. So what does this all mean? Essentially the amazing UCSF docs supported the treatment assigned by my fantastic Kaiser team.

There was a slight hiccup when I met with the radiation oncologist at the new Kaiser radiation center. I won't go into too much detail, but after talking to the doctor and nurse there, I had lost about 20 points on my attitude score (almost dropping to the negative). When I got home, I called my Kaiser NP, and she picked me back up. The main concern was that it was hard to see who was going to be in charge of making decisions about the path of my treatment: the new radiation oncologist, the one replacing him when he moves back to LA, or the oncologists that I first met with? Well folks, it looks like it's going to be the two experts from Redwood City, so any questions or concerns I have I can direct through them.

Of course, now that I've basically decided what treatment I'm comfortable with, I'm anxious to get it started. But before they can start it, I need to have a mask made to align the aim of the radiation. My brother hopes they'll give me the mask so that I can use that and my possible radiation hair loss as an excellent Halloween costume next year....

I will admit that the time between now and the start of the radiation is a little frustrating for me. Physically I've improved a ton since the surgery, and the tumor itself has essentially no physical effect on me (unless it grows back). But not knowing how the treatment will effect me keeps me from jumping back into work or training for a marathon (oh...wait...I forgot that I never liked running).

The rest of my family left this morning after completely taking care of me during the rough times after the surgery. So if anyone else visits me soon, you'll get to see how clean my apartment is! For now. I'm also planning on dragging them back if the treatment knocks me down.

In the meantime, I wanted to thank all of you for the great messages and offers to help me out. Unfortunately the tumor didn't quite remove some of my personality flaws (like stupidly feeling guilty when I get help from someone - even though I also appreciate it), but my freighbor and H-Lo are beating some sense into me since I have definitely needed help. And when the treatment finally starts up, there's a chance that the need will return.


  1. If you're generally hanging at home, I'll be generally swinging by one of these days on account of just because ...

  2. looking forward to seeing that halloween costume next year. and I'll see that I do my part to beat down those guilty thoughts :-)

    good to hear you are on a path now...

  3. Glad to hear that your brain is porous enough to absorb the sense beaten in by your staunchest advocates. But, oy vey! People want to help you, so no guilt, okay?

  4. You know not only would I clean your apartment but I would decorate!!! So how is your energy level and are you accepting home cooked meals? (John's home cooked meals) you know I don't cook.