How am I doing?

Friday, November 27, 2009

My dear, sweet family and friends,

I have been keeping a journal on my computer as I try to sort through all of this craziness. Many of you want to know how I am doing and, honestly, I don’t know what to say. This is very frustrating to me. It just seems too long, confusing, and complicated to express and I know I don’t even understand completely. But I love you and want to try to help you understand. I’ve tried to do so below. Sorry for the length. I am a very open person and think I would just feel more comfortable if I could try to help you understand what is going on. I hope this helps. Thank you so much for your love and support though all of this. It means more to me than words can express!

~Courtney Atack


So…Let’s start at the beginning….

The news of the brain tumor was alarming to say the least and yes, I was scared. I knew that it may be cancer and that it may eventually kill me and that was hard to swallow but I guess I figured, “it’s a tumor. This is 2009. Medicine is really advanced. They’ll go in. Take it out. We’ll see if it is cancer we are dealing with and go from there.”
We met with the surgeon who showed us pictures of the MRI and explained things to us. There were two things going on. Jason explains it below…
Courtney has two things going on. First, she has a tumor about 2 cm in diameter in her right temporal lobe. It is operable, and the surgeon thinks he'll be able to remove the whole mass. We won't know if it's benign or malignant until after it is examined under a microscope by a pathologist. The second thing is that a large part of her right brain has an abnormal appearance that could be swelling caused by a crowding of the brain tissue by the tumor, but could also be a more diffuse type of tumor that would likely be a low grade malignancy. We're hoping to have surgery this month to find out for sure.

Because of her seizures, (and now knowing that there is in fact a tumor in the right temporal lobe) Courtney is unable to drive, cook over our gas stove, take a bath, etc. for at least the next few months.
Then we waited. Surgery was scheduled shortly after that. I didn’t have much time to prepare or process. I think I was a bit frantic trying to get some things ready but I didn’t know what to get ready or how to go about it because I had no idea what things would be like after surgery.
From the most recent appointment with the neurosurgeon I was under the impression that the area they were going into may affect 3 things mentally:
1. my lt. eye peripheral vision
2. my short term memory
3. and music.

That was it. Period. And it was the last one actually that scared me the most. That one had me pretty freaked out but I just didn’t have much time to deal with it. I just had to cross my fingers, say a prayer and hope.

Oh ya. There WAS one more thing. This was surgery after all and a pretty major one at that so it would affect my physical strength for about 6 weeks. I would be tired and need to rest and get help with kids so I could heal from surgery.
I was never really afraid of “death”, except knowing that eventually and “if” they found it to be cancerous, I knew that was a risk. Like I said, things moved really fast and even if I wanted to, I just didn’t have much time to fuss over the details of all of the “what if’s?”. I did recognize that this, in the end, was probably a good thing. Waiting can be so hard. I didn’t like it much and I would have rather had a bit more time but I figured, “we’ve got to get this done at some point anyway. We’d better just do it and find out what we are dealing with here and go from there. Besides, the doctor’s schedule is booked up, he is going out of town for a while, we’d better grab the appointment being offered to us.”
Actually the 2 days before surgery I felt great! I felt totally at peace with everything. I finally understood the true meaning of “being one with the Lords will”. And not just saying it but really feeling it and being ok with it. I knew that there were a bunch of crazy, hard, and extreme outcomes. Many that I didn’t want. But somehow I was given an eternal perspective and just felt like I could see that no matter WHAT happened, it was going to be ok. And I mean WHATEVER happened. It was a pretty strange feeling actually. Anyway, I was totally at peace, which, you know, is not at all like me in a situation like this and the ONLY explanation is the power of ALL of the prayers and fasting done on my behalf. There is no other way I could’ve felt that way, in that current situation, on my own! I have always strongly believed in the power of prayer but I have never felt it work in my own life so strongly. It was truly incredible! A Miracle! A HUGE blessing! Thank you to all of you that gave me that gift!!!

Next, I went in for surgery.

I felt so normal at first. I thought it was just “a flesh wound” =). I knew the doctor had said that there may be those 3 side affects but they seemed to be fine. The things I was not expecting was the vertigo issues, and my vision problems. These were probably a result of the fact that the surgery ended up being a lot bigger and the tumor was a lot bigger than what we had thought. In the hospital they did various neurological tests to check all of my basic functions like moving different parts of my body, touching my nose with my finger, counting the number of fingers being held up and so on. Apparently there was some talk of sending me to rehab but in the end they decided that I had all the basic functions well enough and they sent me home.

Now I did have to come home with a walker but I fairly quickly graduated from it and was on my own feet. I was still pretty drugged up and out of it for a while.

But then as the days went on, the pain subsided a bit, my eye healed up somewhat and I was able to open it. What I saw was alarming. I kept blinking and rubbing my eyes trying to fix it. Nothing seemed to work. Every time I opened my eyes it seemed as though I was looking through a fishbowl with textured glass. Everything was blurry, as if I was missing a bunch of the pixels to the picture and my depth perception was off somehow. That mixed with the vertigo was extremely disorienting!

The vertigo is not gone but is much better. The vision is about the same and I am just hoping that it is because of the swelling and will get better with time. I really hope it is not permanent. It is super annoying!

So what the heck is going on right now?!?:

I’ll try to describe this next part as quickly as I can.

As my activity picked up and I started doing more and interacting more with people and the world I started noticing something. I felt like me but I felt different. Definitely different! What was going on?!? There were little basic things that I would try to do and have problems with. Like putting syrup on pancakes (I’ll tell you that story later) or doing buttons or figuring out which pills to take. I started recognizing that my reasoning power got knocked down to that of maybe a 10 year old at times or a 3 year old at times. For example, I was eating some fruit salad my mom put on a plate for me and I just couldn’t for the life of me spear that grape and get it onto my fork. I was getting so frustrated because I knew that I wasn’t doing something right. I just couldn’t figure out what it was. And worse of all, I knew and could recognize that this was something that I knew how to do, had done a million times in the past (like those darn buttons) but now something in my head wasn’t quite connecting and for the life of me I couldn’t figure it out what wasn’t connecting. I just knew that it wasn’t working like it used to. I also started noticing that emotionally I was about 1 ½ years old with mass separation anxiety. When things around me changed, rooms, people. I would freak out. But I also knew that this was really not normal behavior or feelings for a 33 year old woman. It just didn’t make sense! These are just a couple of examples of what kept happening until it became clear to me that something was off. Something was not the same! I could laugh about it at times, in the moment but the nightmarish thing about it all was…again, I recognized it…saw it for what it was. I felt like I was mad! I thought, “Oh my gosh! Oh no! oh no! I’m brain damaged! I’m just not all there! Where did I go? I have my 33 year old body, all of my memories that made me who I am today. I feel like I am me … and yet I am not me. Something has changed. A lot of things are different and they shouldn’t be different. It’s like waking up and screaming as you look down and realize that your both legs and an arm have been chopped off. You can still feel them and remember what they looked like and felt like but they are gone. Another way I think of it is, my days feel a lot like a fish that is flailing around on the ground thinking, “What happened?!? Why am I not swimming?!? Where did the water go?!? Why can’t I breathe?!?”

*This is the most horrible awful, terrible, horrific thing I have ever gone through! I can’t even begin to explain it. Well, I tried. But I know it’s long and may be confusing and incomplete.

I just didn’t know that I would come out of surgery brain damaged. Not in this way. I thought my risks were just one of those 3 things mentioned earlier. How did I go into this so blind?

I don’t know how or why but it took me about 2 weeks to realize that I was, in fact, brain damaged. That, by way, has been one of the hardest things for me in all of this. I don’t know why it has been so hard to accept. I mean, they took a whole bunch of my brain out! You just can’t do that without side effects. Yes, I may be able to retrain my brain in many ways. And I absolutely plan on it. But meanwhile this realization and all of its implications have me pretty paralyzed.

The brain is a tricky, delicate, sensitive thing. This is all very confusing for me. I almost wish I was a vegetable but didn’t know it. Instead, there is definitely some damage there and I can see it, recognize it. I just can’t seem to fix it. Not yet anyway. It is a very uncomfortable, disconcerting situation to be in. It’s all kind of like an out of body experience in some ways. I feel often feel like there are 2 of me and the old me is watching the post surgery me try to continue on with life. It is very strange. I keep having to remind myself that I am not mad, but just had brain surgery and have lots of swelling along with lots of missing brain tissue. It is going to be a while before things are back to normal. Actually, I don’t know how normal things will get but I am going to try my darndest to get there. Pray for me. It really, really helps. Here’s to a long, strange, crazy, journey through the wilderness. Stay by my side. It helps to know you are there.

Love,
Courtney