Home on Saturday

Just a quick note to let folks know that I was discharged from the hospital on Saturday. I'm at home with a strip of hair missing, about 30 staples, and a headache that comes and goes based on medication. I can't wait to share some details. It was really cool! Thanks for your love and support!

Emily's surgery is over after 4 hours.  The surgeon was very pleased with the outcome, and she looks great.  She was even joking during the surgery.  When they asked her to count, she asked if they wanted her to speak it in Spanish.  She is in ICU now and expected to be in a regular room later.  She expects to be home in 72 hours.  That's all for now.  Signing off for Emily, Suzanne (Mom).

Getting Ready

Well, my surgery is tomorrow. Today I am relaxing and getting things together for being at TGH for a few days. I am trying to get things set so that Gramp and Grandma can hold down fort...school, soccer, playdates, meals, etc. I know they'll be fine (even if it's not how I would do it...they don't even have to tell me. ;-) 

I am reminding myself to trust my doctor and the Tumor Board at TGH that this is the best path for treatment. I've been doing lots of breathing exercises and meditation. I truly feel I am in a good place for this. Nicholas told me last night that I am definitely less stressed than I was a few days ago. It was really funny at the time, but good to hear.

My surgery is scheduled for 7:30 am, so I need to be there at 5:00 am. (Nice!) Seriously though, I am definitely glad it's the first surgery of the day for my surgeon. I think it is expected to take about 4 hours, and the PA told me that their goal is to get me out of the hospital within 72 hours.

Thanks to everyone for the well wishes. That energy is helping me keep the anxiety away! I feel so fortunate to be surrounded and supported by love. (That's you!)

I hope to have someone post an update soon after the operation.

xoxoxoxoxoxoxoxoxoxoxooxxooxoxoxoxoxoxoxoxoxoxoxox

Another Surgery 9/20/2012

Here we are...4 years and 4 months since I had a craniotomy to remove the Grade II astrcytoma that decided my brain was a delightful place to take up residence. Well, it has begun to come back, and I am kicking it out.

I have surgery scheduled at Tampa General Hospital on September 20, 2012 at 7:30 am. That is the bottom line.

Details: After my surgery in 2008, I did not have chemo or radiation. Instead, I chose the surveillance route. In the beginning, I had an MRI every 3 months, then we stretched it out to 4 months. Along the way, we were watching the perimeter of the space where the tumor had been. From pretty much the beginning, we saw very slow growth around the edges that we attributed to scar tissue. That was not unusual. There were a couple of periods near the end of  2011 and the beginning of this year when there was more growth than expected, and we began to think that something other than scar tissue might be what we were seeing.  We began monitoring every 2 months. By June, there was enough regrowth that I needed to make a decion about what to do. My options were: surgery, chemotherapy and/or radiation, a clinical trial, or continued surveillance.

A Grade II astrocytoma with gemistocytic properties is likely to reappear between years 3 and 5 if it is to return. If it does return, there is the possibility that it will be a higher grade and much more aggressive tumor. For those reasons, surveillance is out. I want to get rid of it before that can happen, before I start having seizures, and before I have any other complications. (Yes, I've been seizure free since my surgery in 2008. yay!) Other than surgery, the other options are not guaranteed to be effective, may not do any good at all, and may make me really sick. For those and other reasons, I have decided surgery is the best option for me. Surgery worked for me the first time, and I know I can handle it.

This surgery will be different from the first one, and may be more effective. It will be an MRI Guided Awake surgery. Freaky, right? Awake, really? The purpose being that my surgeon can get cleaner margins. From the JNCI (Journal of the National Cancer Institute), "[Dr.] Zhang points out, accurate determination of tumor margins is especially important for brain and other tumors that are surrounded by tissue that carries out key functions. For these tumors, surgeons do not have the luxury of taking a rim of surrounding normal tissue to better ensure negative tumor margins." Soooo...the surgeon may ask me to blink, wiggle my fingers, stick out my tongue, etc. while he is determining where to cut. My big question was, "So, what if you touch something and I can't respond, then you've already gone too far, right?" The doctor assured me that the brain is resilient and that it wouldn't be permanent loss of ability. I believe that this will be more effective in the long run.

So, here I am, thinking good thoughts and knowing that I will soon be well. Please do the same!

That's the basic story.