Saturday, January 16, 2010

From the Diary of A Brain Tumor Chick

Saturday, January 16th 2010-

The rain has fallen, the storm has passed, and at last the dust is finally starting to settle. I survived the surgery and even seem to be doing better with the recovery. Life is beginning to take hold again. Now is when the fun finally begins again. The everyday, run of the mill things that I have missed so much. The life that I have yearned to get back to. Everything is so much sweeter now and that includes fun. I'm thinking that should be part of the whole brain surgery deal :)

I didn't realize what a recluse I had become. I think it was part of my coping mechanism. That's what I'm going with anyway :) It wasn't a conscious decision I remember making, but it was made all the same. I simply did not want at any point to have to publicly admit the tumor was there, that it was real. At the time, I could not, in my mind, afford the luxury of admitting it was there, of acknowledging the truth, or being scared. I could not afford to face the enormity of it. I had only one option, and that had to be to press forward however I was able to. I guess for me that was a little bit of avoidance :) (Got that from psych. class) Not that I could completely avoid it, it was large and pressing on my brain :) I did my darndest (a Francis word) to though. I got pretty good at it too :) I did, what I had to do.

Life is pretty dang good now. (Pardon the slang) I have more energy and have been incredibly blessed with a new lease on life. No longer a recluse, I'm not even shy about the huge scar on my head anymore. The hair that was shaved is growing back. The stitches are gone. The scar is healing. I can even manage to go out without a hat on now if I apply the correct 'swoop' motion with my hair over that area :) And if it does's ok. You won't catch me fretting over my battle scar. The swelling in my face is almost completely gone now too. So I'm feeling less and less like Jolly Old Saint Nick, which for me, is GREAT! After a little more time there won't be any viewable physical evidence of what has plagued my life for the last few months. These are huge accomplishments for this Brain Tumor Chick :)

When things are still and quiet I find myself feeling this area of my head and all the changes that have occurred. It's not the same, it doesn't feel the same. Thankfully I have thick hair so no one but me will ever be the wiser. It lumpy and uneven. You can tell where the skull was removed and then reapplied, which was a little more than half my head. In places the scar is more raised than others. Sometimes I simply walk past a mirror in my house with my hair pulled back and it catches my eye. I can't yet keep walking. I have to stop and examine it. I have to stop and see what changes have taken place that day. In a way it's getting to know my new head. It is, right now, a tumor-less head! That is something I now take a lot of inner pride in, it's something I survived and lived to tell about.

The getting back to normal part didn't come as easy as I thought. I am still me and find more of 'me' in myself everyday. But the day I got diagnosed I somehow instantly knew that life would never be the same. I could never be untumorfied (yes, that's right I made that word up). From that day forward I would be a Brain Tumor Chick. I've said many times before that this would never go away and I now believe that more than ever. I have, although, been pleasantly surprised by the change in outlook I have now. Maybe, just maybe Brain Tumor Chick isn't so bad. Maybe I can 'rock' this thing after all :)

Life goes on, the world keeps turning, and I too keep going. I can't say yet that there has been a day that I haven't thought about the tumor, about Egore. It's usually during my workout that it completely consumes my thoughts. It's then that I'm able to reflect on all that has happened, all that I've gone through and all that has changed. I can do that without tears now (most of the time). I definitely don't think of it in the same way. That too has changed. Fear no longer sweeps over me at the thought of it. Complete sadness no longer takes hold. I'm still not to the point that I'm thankful for Egore or the experience yet but I would say that we're at peace with each other, my brain and I :) If that makes any sense :)

So that's my progress so far :) I'm now ok with my huge scar, dented head (that you really can't see) and my brain and I are at peace with each other! This is my crazy Brain Tumor Chick Life...I love it!

Saturday, January 2, 2010

From the Diary of a Brain Tumor Chick

Friday, January 1st 2010-

I can't believe I just typed 2010. It seems like just yesterday it was October. I can almost close my eyes and the last few months feel like a distant memory. Something that didn't really happen or happened in another life. It only takes a rub on my noggin' to realize there's no denying it. The large scar gives it away immediately. No denying that :)

Recovery has been tough. As I've said before, I'm not great at being patient. Just about the time I thought things were looking up (a little before Christmas) I slid back down the slope. My brain decided it was a good time to become inflamed and cause havoc. Multiple doctors visits and yet another round of antibiotics and steroids was enough to kill what little morale I had mustered up. But I am happy to report that it also soon passed and I once again began climbing that mountain of recovery.

I just had my one month check up in Jacksonville with my Neurosurgeon. I was nervous. I was finally going to get the final pathology report. I was going to find out whether this brain tumor, Egore, that invaded me also brought me cancer.

I had a list of questions to ask the doctor...mundane things like "When can I go back to the gym", "Which medications do I need to continue to take". No where on the list was 'Pathology report'. I completely forgot. It had consumed my thoughts so completely since I left the hospital and began recovery, I can't imagine how I didn't list it.

I diligently went down my list with Dr. Hanal. He looked at my incision. Pulled some stitches out that had not dissolved. Thanked him, even took a picture with him (for my record) and he began to walk out the door. My younger sister nudged me and mouthed the word "RESULTS?", like hello lady, and I quickly snapped back to reality. How could I forget that? It was what I most wanted to hear. I quickly asked and my wish, my prayers, and the prayers of so many others were answered. Dr. Hanal very casually turned and said, "Oh, completely benign". As casual as saying "I'll have cheese on that" or "No pickles please", he was confident and calm. He said it with surety that gave me such relief.

I was very aware of the fact that I was nervous and anxious about the results (obviously) but I had no idea how very much was weighing on that moment. I cannot express the amount of vast relief I immediately felt with just hearing those words. It's almost as if there was a shadow, a cloudy shadow following me around up until the point that those words were spoken. I wondered if for someone who gives news like this everyday, if Dr. Hanal could have any idea the power of what he was telling me. Everything, and I mean everything hinged on those results. In that very instant I can honestly say, I was a new woman. I felt like I had a whole new life.

After a few technicalities we left the Mayo Clinic. I reached the doors and the second I stepped out to the outdoors I screamed. Or maybe it was a yell. All I know is that it had to come out and it did. I think I may have scared the little valet man :) but I didn't care, it felt so good. I had confirmation, confirmation that I had a future! What a wonderful feeling that was and still is. It has yet to leave me. I hope it never does. I want to hang on to it for the rest of my very long life that I intend on having.

My news could not have come at a better time. Two days before a new year. I was only too glad to say goodbye to 2009 and hello to 2010. 2010, and every year after feels like a gift. It all could have been very different. It seems symbolic and right. It's not a gift that I have any intention to ever waste. Nor is it a gift that I will ever be able to accurately express to anyone who has not gone through something similar. I can't tell you how much I wish I could because it is so powerful.

I have to return to the Mayo Clinic (or the Mayo Spa as I've decided to call it...a clinic is somewhere you go when you are sick...and I am no longer sick :) every three months for an MRI for the next 2yrs. If there is no re-growth I will then move to every 6mos for 3yrs. If there is still no re-growth I will then move to once a year for the rest of my life. Daunting, to think that this will never 'really' go away. We will always be looking for Egore. The tumor is gone (I saw the pictures, they were beautiful) but tumor cells could remain. I already have to stop myself from thinking about the next MRI. Wondering if there will be growth. Wondering if I will ever have to endure another major brain surgery. It could easily consume me. I work each and everyday to not allow it to. It will take work, and getting used to but I am determined to hang onto the shear happiness I have now.

Things are progressing. I get more and more stamina everyday. Having my news I think makes me able to be a little more patient :) I actually played a little basketball with the boys today. I caught myself running after the ball, and it felt great. I didn't even find myself too winded and out of breath, which if you've seen me since the surgery you know that's an accomplishment itself :) I lost, but even that didn't matter. It was so fun.

Besides basketball we watched movies and football, wrestled and horseplayed, and I made dinner (black eyed peas, rice, turnips and cornbread) the traditional southern New Years dinner. It was an AWESOME day! An AMAZING day! One of the BEST days ever!

So here's to 2010! A year full of awesome, amazing, and best days! And most of all tumorless, Egore-less days!