This weekend marks my first night by myself, and my first weekend since the surgeries. Because I've been unable to take my pills regularly (I'd either forget I'd taken my pill, or accidentally eat too many), I've been untrustworthy to be alone. Finally, with the help of my speech therapist, I put my pills in an organizer and low and behold I am responsible!
With my new found freedom, I'm being insanely lazy. On Thursday night I started off on the wrong foot by getting sucked into a marathon of the Real Housewives of New York, and almost lost it but I saved myself by turning off the TV and starting my first book. Normally I prefer non-fiction, or historical fiction (ie: Grapes of Wrath...I'm a sucker for Steinbeck). There's something consuming about a good book, that television just can't provide.
So here I've been for the past two days reading my first book. I'm pretty sure that I'm not really retaining anything, but on some level I'm telling myself that it's good practice for my brain, and it HAS to be better than television. Right now I'm reading a cheesy fiction story, about as mind numbing as it gets but it's really fun! It's like a Devil Wears Prada kinda book. I guess life is so serious sometimes you have to lighten up.
My day goes about like this.....
I wake up in the 5:00am hour and read for a couple hours, and take my medication, and then I go back to sleep. At around the 11:00am hour I make a pot of coffee and read some more, or continue working on my crossword puzzle (which I've been working on for three days...speaking of which, does anyone know what the heck "Mas that baa" that has four letters "e_es"). Then I head to sleep. I wake up in the early evening to read some more and then maybe watch some 20/20, or something like that. Last night it was the Natalie Holloway story, good God that is a horrible story! That Dutch kid is guilty in my book and he's evil. Yep, I'm passing judgment. And now, it looks like he killed that young woman in Peru. It blows my mind that there are such disgusting people in the world. I shouldn't watch that kind of night time TV before bedtime while home alone. Anyway, I read for a few more hours and then go to sleep. Not bad! Talk about relaxing.
Things will definitely change next week though. Finally I'll be able to drive again....YAY! I feel like a sixteen year old again! Starting this week I will be able to drive with a companion. I should clarify that I don't have to avoid driving alone, and in fact now that I've hit the six week mark I don't have to limit myself at all. I could go drive doughnuts around the Safeway parking lot if I wanted to, but I'm scared that I might hurt someone. I figure, if I can't hold a conversation when there's background noise because I lose my concentration, how the heck am I going to be safe in front of the wheel? For now I'm going to slowly practice driving and take pointers from my co-pilots. I figure Danny, my Mom & Dad will all know if I'm safe enough to drive alone or not. It's obviously better to be safe than sorry, and I would never forgive myself if I hurt someone else because I had a hankering for some peach sorbet.
All of this reading is exhausting, but it's also helping me sleep and recuperate. I get the feeling that my family and Danny will be pretty amazed at my language improvement over the weekend. They will see the improvement in my speech, and I'm excited for them to see the renewed depth of my speech. I've still been the same person, I've just been unable to get my point across the way that I want to. It's a long process of growth, but it's getting so much closer to me, the REAL me!
Jun 12, 2010
Jun 9, 2010
The Partially Awake Craniotomy
Ok, here it is, the story of my first brain surgery.
On Tuesday, April 27th at 4:30am my family squished together in my dad's truck on our way to UW for my 5:00am appointment for surgery. I sat between my parents, and in the back seat Jessica Abu Dhabi was sandwiched between Kaal and Danny. We knew where we were headed, but we had no idea how intense the journey would be.
Along the drive I joked with my dad that he was torturing with me with his coffee. I had been on the no-liquid or food diet from midnight on due to the surgery restrictions. I LOVE black coffee, thick as mud, just the way my dad makes it, and I was really wishing I could steal his cup. I could see that my mom was nervous, and there was definitely strained humor along the car ride as we tried to joke around. It was almost as if everyone was trying to pretend that we weren't headed to the UW, that maybe we were heading to the airport for a family vacation. I remember thinking that I was caught between two different worlds, excitement for my surgery because I was going to be awake while having doctors work on my exposed brain, and the other world of the unknown.
Once we arrived at the surgery pavilion at the UW, I checked in and we sat for a few moments before I was whisked away to surgery prep. When I changed into the hospital gown, and the assistant shaved the areas of my skull I got even more excited for the next leg of my journey. Next, they placed electrodes (don't know if "electrode" is the proper term, but I'm just going to use it anyway because I think you get my point) around my head and drew circles via marker around each one of them to mark the proper locations for the mapping (thanks for that! It took weeks to remove the permanent marker!). The computer calculates the location of the incision, but the electrodes are placed by hand. Below is a photo of me with the computer electrode thingies all over my head. My pre-op nurse Daisy, was pretty angry at the assistant for doing such a crappy job of shaving my head (you can see in the 2nd photo the shaved hair on my pillow). She basically kicked him out of our room because she knew (I was clueless) that I would have to be in the same gown for a few days and all that hair would itch like crazy. Gotta love nurses, they really take care of you! That's Daisy's hand cleaning me up in the top photo.
After a quick consultation with my anesthesiologist, my family quickly came back in to say goodbye I was headed out the door for surgery.
Once I was wheeled into the operating room, I remember saying hello to my smiling surgeons, and the technicians from my consultation from the previous week, and seeing about a dozen other faces that I didn't recognize, but they were all really kind. I remember feeling completely comfortable, despite the cool temperature. They gave me a run-through of what I should expect and before I knew it my mouth was covered with what looked like an oxygen mask and someone was counting down.
The next thing remember, I was laying on my right side on the operating table as I heard someone calling for me, "Jessica?" The anesthesiologist was right, once I woke up I didn't feel groggy at all. I was completely awake, and ready to go. I had been waiting for this moment, anticipating this portion of the surgery like a test. I was ready to do everything I could to aid the surgeons. To keep the mood light, we had some small talk and joked around a little bit and they told me that they were going to go through a sample of images on the computer screen and I was supposed to name the image (for example if it's an image of an apple, say "apple"), while they stimulated different locations in my brain.
As the image series was conducted, they were probing my gray matter to discriminate between healthy gray matter and tumor matter. Throughout the image series, as I was naming the images, every once in awhile my body would involuntarily jerk. I remember at one point, my torso spasmed, and I said to the surgeons, "Oops, guess I need THAT section!" They laughed, and said something along the lines of, "Don't worry, we'll keep that."
When they were done with my image series I said a variation of, "Thanks guys, that was really fun!" And I went back to sleep with the help of the anesthesiologist. For the remainder of the surgery while I was asleep, the surgeons weeded out the groups of tumor cells as best they could. It's impossible to remove the bad cells. In the size of the tip of a pin is a million cells. As you can imagine, it's impossible to differentiate between every single cell, or even small groupings of cells. Also, there is no visual difference between tumor cells and brain cells only a difference in density so they used an ultrasound machine to discriminate between the unhealthy and healthy sections. As one of the UW neurosurgeons explained to my family and me, the tumor cells in my brain are like a bucket that has had a handful of sand tossed into it. Although most of the sand is concentrated in one location, there's sand all throughout the water.
The next thing I remembered I was awake and a little hazy. I vaguely remember smiling at the surgeons as I was being wheeled out the door and I gave them two thumbs-up signs (which was later confirmed by the Chief Neurosurgeon when he spoke to my family and friends in the waiting room - it's almost too cheesy, right?! A double thumbs-up?? I've never been good at playing it cool. One thumbs-up sign would have sufficed). At that point I remember feeling exhausted, but at peace. Little did I know what was in store for the next 24 hours. I thought I had made it through the hard part, but the really frighting reality was my continued mental deterioration and the emergency surgery the next day. I had no idea it wasn't ALL just fun and games as I had been hoping.
On Tuesday, April 27th at 4:30am my family squished together in my dad's truck on our way to UW for my 5:00am appointment for surgery. I sat between my parents, and in the back seat Jessica Abu Dhabi was sandwiched between Kaal and Danny. We knew where we were headed, but we had no idea how intense the journey would be.
Along the drive I joked with my dad that he was torturing with me with his coffee. I had been on the no-liquid or food diet from midnight on due to the surgery restrictions. I LOVE black coffee, thick as mud, just the way my dad makes it, and I was really wishing I could steal his cup. I could see that my mom was nervous, and there was definitely strained humor along the car ride as we tried to joke around. It was almost as if everyone was trying to pretend that we weren't headed to the UW, that maybe we were heading to the airport for a family vacation. I remember thinking that I was caught between two different worlds, excitement for my surgery because I was going to be awake while having doctors work on my exposed brain, and the other world of the unknown.
Once we arrived at the surgery pavilion at the UW, I checked in and we sat for a few moments before I was whisked away to surgery prep. When I changed into the hospital gown, and the assistant shaved the areas of my skull I got even more excited for the next leg of my journey. Next, they placed electrodes (don't know if "electrode" is the proper term, but I'm just going to use it anyway because I think you get my point) around my head and drew circles via marker around each one of them to mark the proper locations for the mapping (thanks for that! It took weeks to remove the permanent marker!). The computer calculates the location of the incision, but the electrodes are placed by hand. Below is a photo of me with the computer electrode thingies all over my head. My pre-op nurse Daisy, was pretty angry at the assistant for doing such a crappy job of shaving my head (you can see in the 2nd photo the shaved hair on my pillow). She basically kicked him out of our room because she knew (I was clueless) that I would have to be in the same gown for a few days and all that hair would itch like crazy. Gotta love nurses, they really take care of you! That's Daisy's hand cleaning me up in the top photo.
After a quick consultation with my anesthesiologist, my family quickly came back in to say goodbye I was headed out the door for surgery.
Once I was wheeled into the operating room, I remember saying hello to my smiling surgeons, and the technicians from my consultation from the previous week, and seeing about a dozen other faces that I didn't recognize, but they were all really kind. I remember feeling completely comfortable, despite the cool temperature. They gave me a run-through of what I should expect and before I knew it my mouth was covered with what looked like an oxygen mask and someone was counting down.
The next thing remember, I was laying on my right side on the operating table as I heard someone calling for me, "Jessica?" The anesthesiologist was right, once I woke up I didn't feel groggy at all. I was completely awake, and ready to go. I had been waiting for this moment, anticipating this portion of the surgery like a test. I was ready to do everything I could to aid the surgeons. To keep the mood light, we had some small talk and joked around a little bit and they told me that they were going to go through a sample of images on the computer screen and I was supposed to name the image (for example if it's an image of an apple, say "apple"), while they stimulated different locations in my brain.
As the image series was conducted, they were probing my gray matter to discriminate between healthy gray matter and tumor matter. Throughout the image series, as I was naming the images, every once in awhile my body would involuntarily jerk. I remember at one point, my torso spasmed, and I said to the surgeons, "Oops, guess I need THAT section!" They laughed, and said something along the lines of, "Don't worry, we'll keep that."
When they were done with my image series I said a variation of, "Thanks guys, that was really fun!" And I went back to sleep with the help of the anesthesiologist. For the remainder of the surgery while I was asleep, the surgeons weeded out the groups of tumor cells as best they could. It's impossible to remove the bad cells. In the size of the tip of a pin is a million cells. As you can imagine, it's impossible to differentiate between every single cell, or even small groupings of cells. Also, there is no visual difference between tumor cells and brain cells only a difference in density so they used an ultrasound machine to discriminate between the unhealthy and healthy sections. As one of the UW neurosurgeons explained to my family and me, the tumor cells in my brain are like a bucket that has had a handful of sand tossed into it. Although most of the sand is concentrated in one location, there's sand all throughout the water.
The next thing I remembered I was awake and a little hazy. I vaguely remember smiling at the surgeons as I was being wheeled out the door and I gave them two thumbs-up signs (which was later confirmed by the Chief Neurosurgeon when he spoke to my family and friends in the waiting room - it's almost too cheesy, right?! A double thumbs-up?? I've never been good at playing it cool. One thumbs-up sign would have sufficed). At that point I remember feeling exhausted, but at peace. Little did I know what was in store for the next 24 hours. I thought I had made it through the hard part, but the really frighting reality was my continued mental deterioration and the emergency surgery the next day. I had no idea it wasn't ALL just fun and games as I had been hoping.
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