July-August Update...

I’ll start with something I’m hoping most people will read so I don’t have to constantly repeat myself… So here’s my current health situation:
I’m kind of stuck in limbo… recently I’ve had a few “ugly” MRI’s, meaning that the doctors aren’t quite sure what’s going on inside my noggin’… It could be necrosis due to radiation damage, or tumor growth, or swelling/edema. Instead of using MRI’s, I will eventually have a PET scan which should hopefully help determine what’s going on. We’ve experimented with a variety of treatments: steroids, 66 hyperbaric oxygen (HBO) treatments (as of today), possibly up to 90 (which is extremely rare), more Avastin (Bevecizumab)/“poison”/chemo/monoclonal-antibody, which is rather unpleasant I must say due to its nasty side-effects, and the possibility of surgery to remove all the questionable “damaged” parts of my brain, which would most likely leave me hemiplegic (half paralyzed… on my left side since a lot of my right brain would be cut out). Again, who knows… I’m kind of just along for the ride, somewhat reluctantly going through the treatments my doctors suggest because I believe in them. I’m still doing occupational therapy as much as my fatigued body will put up with (not very much or very often), just in case surgery gets ruled out, and even in case surgery happens so that I’ll still be strong enough to help recover. I’m bouncing through a whole heap of meds, constantly trying to find a good combination to help me feel better. I’ve recently started on a BIPAP (a machine that helps with sleep disorders, though I’m not convinced it’s helping too much)… I get to wear a mask that makes me look kind of like a fireman, which I would have loved when I was five, but is really just kind of annoying. I guess that basically summarizes it.
And now for something a bit more “unique”, the part of writing this blog that I enjoy the most:
I met some of my best online friends through an internet game. I played under the alias BaldNScarred, which is an obvious physical description, but indeed somewhat metaphorical, which you might recognize from previous posts. The other night I woke up thinking about this name and how it is such a good fit for me; I wrote this poem about it (will finish it as I sit here):
My name from the truth isn’t too far.
I am bald; I am scarred.
Brain cancer has made me so,
But bitterness or anger doesn’t change it though.
I do not live in fear,
But instead I’m a broken soul.
When love, reality draws near,
I withdraw; hide in a hole.
“Scarred” is often mistaken for “scared”,
But unfortunately it is a bit true.
Metaphors, memories, life’s moments,
Often life’s opponents.
My body, wounded and weak,
Crumbling slowly; healing I seek.
Patience, prudence unpeered
Strong, stubborn soul riding stressed,
Unsteered.
Stuck in the unknown,
Not sure where it’s going
Blindly following what I’ve been shown
A painful process, predictably annoying.
BaldNScarred: bald is beautifully shiny;
Scarred causes me to be whiny.
But I try not to complain too much,
For I’ve been given a gift.
This gift is not sought as such,
But it creates a rift
Between you and me;
And I can see;
I’d like to show you what I’ve learned;
I’d like to lead you to what you’ve yearned.
Can you tell me what’s missing in your life?
Is it worth going through the strife?
Think about your troubles, your sorrows;
Will they still be there tomorrow?
I know mine will;
They’ve given me a skill
And I often take it in stride,
With this strategy, I confide
In you that often through the pain,
In spite of the feeling that nothing can be gained,
Your struggles make you strong;
Too often, giving up is a poorly, mistaken song.
Accept who you are;
I sit here smoking a cigar.
I’ve fought through cancer,
But I do what I enjoy.
Life is my answer,
Dare I try to destroy?
I’m a soul in a borrowed body;
What am I to do with it?
Don’t take this as a decision, shoddy,
I use it to show off whimsy and wit.
I take my bald; I take my scarred, sometimes scared
With time, patience, I will be spared.
Live and love living.
Give and love giving.
Believe.
You’ll feel relieved.

I guess a way to summarize what I’m saying in this poem is I accept who I am, and I accept the rough road I have to ride on. Unfair as it may seem, to me it’s nothing I would change (except for getting through all this crap and showing that it can be done). I believe the choices you make and the results of those choices have lessons to be learned, but I question whether or not they are worth going through. I hope that you don’t have to go through what I’m dealing with, but if you do, it is definitely worth seeing where it takes you. Indeed, life is difficult, but memories from the way you live are what you take with you in the afterlife; being a good person, creating good memories, fighting and surviving, yet enjoying every moment, somehow…
I’m sitting here smoking a cigar and having a drink with one of my best friends in the world; a person I’d never take for granted. Knowing how much we’ve “been there” for each other is something worth carrying with me. Many people question how, after cancer, I can be so wreckless that I continue to “abuse” my body, but I’m doing something I undoubtedly enjoy.

Well I typed this up a few days ago... more to come soon, barring further distractions/fatigue...

First of all, the 2011 Walk Ahead for a Brain Tumor Cure is official! One very important thing to keep in mind is that Brain Cancer Research is poorly funded due to the research/drug companies' lack of potential profit due to the rarity of brain cancer (I think it's in the small 1-3% of cancer types). Specific details about the Brain Tumor 5k are on the following link:

http://www.walkahead.org/5k-walk-run

If you would like to join my team (Matt's Matter Matters) to participate:

http://registration.walkahead.org/walkahead/CompleteRegistration.asp?fkroledescid=1

If you would like to donate to the cause without joining:

http://registration.walkahead.org/walkahead/CompleteRegistration.asp?fkroledescid=1

Thank you again to my amazing Uncle Don and new Aunt Debbie for requesting donations in lieu of Wedding gifts... Congratulations! You are both amazing and love you both!