Cancer Update 5

Cancer Update 5

My goal is to write this in one pass. Because honestly, I do not believe that I possess the testicular fortitude needed in order to reread, rewrite or reexplain the predicament which I now find myself in.

In the face of what I am about to confess here it might need to be said that this not a letter of resignation on my life or acknowledgment of upcoming failure – it is not in my nature to give up. It is, however, an open and honest assessment of my current condition, my options, and my future.

First, it should be noted that I have been pulled from the Tocagen trial (a procedure that injects a virus into the cancerous tissue of the brain, that can be then targeted by its unique DNA) because the tumor has become too aggressive to not take immediate action against it. This was the least evasive of my options, and my best hope for me to work back towards a normalcy that I can hardly remember.

Okay, so here is the gist of it. I have now exhausted all of the currently available medical options geared for curing me and am now committing to the maximum dose of chemotherapy and Avastin (a bi-weekly blood infusion treatment system) for at least one full year, in an attempt to only inhibit or slow the tumor growth and accompanying brain damage. The hope is that another treatment will become available sometime during this year, or I guess at the very least, buy us the needed time to rationalize the agonizingly inevitable decision of balancing quantity of life against quality. As difficult as it is for me to fathom, this is where it actually becomes hard. There is no more planning for a future of normalcy, there is only my desperate grip to hold on to the liquid normal that is rapidly pouring through my fingers.

My options at the end of this year will be a weight against time and ability; is being crippled worth five years? Is brain damage worth six months? When does it become too hard to watch and who makes that decision in the end? Is it me that lets go for their sake? Is it a question of... of what? I do not want to decide! I don't know how!

What the hell am I supposed to base this on? How long do you watch a dog suffer before you put it to sleep? Do I do everything that I possibly can, no matter what the cost is to my family’s emotional sanity? My family will be able to take exactly as much as they can and no more. And what is that? I will have to ultimately decide how much that is and I am positive that it has already been too much for them. They deserve better than this.

The reality is, that at the end of this year I will weigh the consequences of brain damage from radiation vs. brain damage from surgery. I know – decisions, decisions, decisions.

I have always been a private person. I have worked diligently to keep my thoughts and actions to myself, and have attempted to keep things light and avoid judgment of any kind; negative or positive. I was talked into doing this blog as a coping technique to deal with the feelings that I am, by nature, compelled to hide; to address what is impossible for me to verbally express; to give my sons a solid understanding of the man I was, the man that they will know from memory alone. And up until this point, I have neglected the most important and most painful part of this undertaking; addressing you two directly.

I do not know how old you will be when you finally read any of these posts. Or, what you will ultimately think about them and me in comparison to the man you thought me to be. I don't know if you will resent my decisions or be angry at me for not allowing you the full knowledge of the circumstances; which is to say, and I hate this so much, is now your circumstances. It is a difficult thing to contemplate your right as my child to know and your right as a child, to just be a child. As a parent, it is supposed to be my job to shelter you from hardship, which I cannot, since I am the hardship. Your lives are not going to be as typical as your friends, but please do not become hardened. Wounds, especially deep ones, have a tendency to scar and callous. As I think about both of you; your innocence and unabashed kindness, my biggest fear is that you will become jaded to your own exceptionalism by such a harsh childhood, and will not embrace the beauty of this world.

You two are only boys right now, but when I look at you both, I can already see the men you are going to be. I want to give you advice, wisdom, words to live by... but what they are, I am not sure. I would tell you to be good, but you are both great; I would tell you to be strong, but you have proved already that that would be an unnecessary statement; I would tell you to make me proud, but I am already proud and it would be impossible for you to do anything that changes that fact.

Just know, that whatever confusing pain you were forced to watch me go through, it was so worth it; there is nothing in this world that could ever hurt anywhere near enough to block out the amazing moments you gave to me by just being next to you both. That's enough for now I think. So, Ethan and Caden, if you are old enough to read this- go get a job and stop giving your mom a hard time. I love you both.