Friday, September 20, 2013

Almost go time...

I finally had my treatment planning day. It's been two months since my surgery and right now I'm scheduled to start everything October 3rd. I've been pretty frustrated about that. I literally could have been working this entire month rather than sitting around, not working and trying to hold onto my sanity.

Anyways treatment planning consisted of three appointments. First I had a head/mouth mold made. The mouth mold (which was just like making old school mouth guards) is screwed to a head frame, the head mold goes in the back of the frame/back of my head and then the frame is screwed on; VERY tightly. That frame will then be bolted to the table I'll lie on during treatment. I'll try to get a picture of it at some point, it's quite the contraption. The purpose is so that I cannot move my head at all during therapy so the beams go to the right spot every time.

The second appointment was to have small silver fidicules (aka silver BB's) embedded into my skull. These are also used in the precision of treatment and help them guide the proton beams to the same place each time. Nothing more precise than having the markers screwed into your skull. They were placed under local anesthesia (lidocaine) which I actually didn't even feel because my scalp is still numb from surgery. I could feel a lot of pressure though as they were screwed in (three of them), and the sound of hearing your own bone crushed and drilled into is not something I would ever want to experience again.

Last but not least I had a CT scan which they will use to plan my treatment and where they want the radiation beams to go. I would say it was by far the easiest part of the day if the tech placing the IV (for contrast) wasn't so nervous and shaky about it...where are my NICU nurses when I need them?

So that's it. It takes the doctors about a week to get my treatment planned. Right now I'm scheduled to start October 3rd but it could be moved up if they finish planning sooner (I'm not holding my breath though).

I am ready to get this show on the road for sure!


  1. Even though we've never met, I hold my breath when I read your posts because I have some understanding of the emotional roller coaster you are riding... I just want to reach through cyberspace and give you a hug. You keep on being strong and staying positive. I'm sending lots of good thoughts your way.

  2. Hi Erin, I don't think we've ever been in touch but I found you somewheres, can't remember and I've been following you. I've also just found an entry on Audra page from you. If been going back and forth with Audra for years. Anyways's my name is Debbie and my son also had a PXA with AA. I have a caringbridge site set up for him and will pass it on to you. Not too sure if you've already found it or not but here it is. . He is doing well, we are 8 years out this month. Woo can do it too! Here's a big hug for you <3