Tuesday, February 1, 2011

A New Chapter

I recently finished writing a song called "Better." I had been trying for so long to put into words and melody the deep disappointment and frustration I've been feeling since this whole thing began. And while I managed to get so much emotion out of myself and into something tangible, I still feel like there's an ocean inside of me, and I'll just have to wait for it to come out when it's ready.

"Every time I think it's getting better, another part is broken apart, and I can't do much better."

That's the first line of the song; the first thing that came out of me when I sat down and plugged out the chords on the keyboard. It sums everything up so well. For a moment, I think things are improving. Then I remember my reality.

Now and then I wish for something better
My heart is open
We all make mistakes but I'm a sinner
Keeps playing all night long
Like a voice from down the hall
Hoarse, strained and distant like some cold, desperate whisper
Saying tears will make you sane
But it hurts just the same
Pills numb the pain, but they just don't make it better

The whole song came together in small pieces; that's just the second verse, but it expresses my feelings pretty well. I've realized that I can try as hard as I possibly can, go through every day as best I can, but in the end there are just so many things that are out of my control.

I was talking to my dad the other night, and at the end of the conversation I told him goodnight, and that I could promise to be there the next night and say the same thing. And I know that every night I get to say goodnight, I'll wake up the next day, go through the day, and be able to say goodnight again that night. I'll keep doing that until I can't anymore; that's the only way I know how to go through life. It's stripped down to the very bare basics of it; one day at a time.

A few months ago, I started working part-time at a fundraising company called My Sports Dreams. The company started out working with just youth, high school, and college sports teams, helping them raise money through mail campaigns, and now we help all kinds of groups and organizations outside of the sports realm as well. Laci and I recently moved into an apartment together in the city, and my bosses have been kind enough to let me do my work from home.

I'm so incredibly lucky to have Laci in my life. She warms my heart and reminds me every day that things are going to be okay. Many times I forget; it's hard to keep telling myself things will work out.

Before I started writing tonight, I went back and read some of the things I wrote when I was just starting this blog. I was neutropenic; I could barely leave the house; my life consisted of chemo and recovering from chemo; yet I was so optimistic.

I've heard a million times that I'm "a special case" and that my cancer "presents differently" than the diagnosis normally does, and I always thought that was working in my favor. I've already reported that the old "low dose" chemo wasn't working, so we had to switch it up. Well, we gave that a few months and it wasn't working, either.

Now we're sort of at a crossroads. I'm on some growth inhibitor to try and keep the tumor's spread at bay for a moment, and I'm off to Dana-Farber this week to meet with some new doctors. Maybe they have some fresh perspective.

It's difficult to face the morbid possibility as a possibility, refuse to accept it, and keep believing every day that this thing will get turned around. But the thing is, drugs have worked before, if only for a little while, and I know what it feels like for them to work. Pair that with the fact that I'm not dying! Not right now, and not any time soon. I have reason to believe some drugs can work again, we just have to find the right ones.

The scary thing about these tumors is that they can "hide" when they sense danger, then spring to life again when the coast is clear. But to me, I don't care if they're hiding, as long as they're not reproducing like jungle bunnies and trying to kill me.

Right before Laci and I moved into our apartment, I went to Israel on Birthright. In hindsight, it was probably not the best thing for my body. Airplanes, crammed buses, a lot of walking around; I went because I didn't know when or if I'd ever get that opportunity again. I'm glad I got to see the country; the place from whence life sprang, religion began, and all of that. It was fascinating to see the hills where rivers used to run, in a country now suffering from a terrible water shortage. We saw villages enduring daily bomb threats, where playgrounds require bomb shelters and shrapnel is still sticking out of the ground.

I have always admired and respected those who serve and have served in the armed forces. I was anxious to meet the Israeli soldiers, a few of whom traveled with us, and to observe their demeanor and outlook. And, in all honesty, when I met them and explored their country, I thought to myself, "So, this is your battle."

Sure, it's a whole different world for those kids over there. That is what they are, after all. Kids. Ages 18-21 in most cases. And some of them never get to leave the armed forces. But most of them "graduate," move on, carry on with their lives. I was jealous of that.

I've always been in pain. It's just a part of my daily life and I'm dealing with it. My bones ache, and I'm adjusting to the brand new side effects of this new drug. I had an MRI on my head to make sure the tumor wasn't in my brain. And while it isn't in my brain, it's on my brain, under my skull, as well as pushing against my skull in a few different places. All of them hurt.

The doctors said the tumor sitting on my brain isn't an immediate threat to me. All of my neurological functions are fine, and apparently it has "space to grow." Surgery is an option; they could remove it, but right now the risks are pretty heavy in relation to the potential benefits.

It just feels like there's a gun being held to my head and the trigger could be pulled at any minute. Like everything could go white and that's it. Maybe that's a reason to live every minute of every day like it might be my last. Maybe it's a reason to break down and cry. I believe both.

The pain fluctuates on a daily basis. When I got home from Israel, my back was all tightened up like a twisted sponge. While that has gotten better, I still feel a lot of the time that being asleep is better than being awake. Being asleep doesn't hurt, though it's usually narcotically induced, and every time I wake up I get to remember the pain as it sinks in.

The reality remains that we have to find something that works. I know there are drugs out there that will; possibly the one I'm on right now, it's too early to tell. I am aware that medical miracles happen all the time, and all I have to do is stick around until they find one for me. I also realize that even if and when another drug begins to work, the tumor may just be "hiding" again until it senses the right moment to expose itself.

These are facts. I'm not trying to be morbid, I'm just being honest. That being said, I will NEVER accept not beating this thing. Not ever. I will fight until the bitter end. I dream of holding all of this tumor in a jar and burning it; watching it sizzle, listening to it hiss as it disintegrates.

I have things to keep fighting for, too. The band is doing great; we just started doing shows again. I need to see how far we can go. Our material is better than it's ever been.

I want it all
Some kind of wonderful
Make me right when I fall
Put my feet on the ground
So far between, so far apart
What I didn't know
I should have seen
Right from the start

That's the chorus of "Better." I want it all. I want to have everything there is to have in this life. There is no reason that someone else should have it and I shouldn't. I refuse to accept that. Laci reminds me that I can still have all of that. I can still have a life, a wife, a career, a family, a future. That gives me the strength to keep going every single day, even if it is just one day at a time.

I feel like I'm starting a new chapter. Like I said before, I don't know the end of my story anymore, and I suppose that's how it's meant to be. I'm in a new place, going for new treatment, looking for a turnaround, (hopefully) picking up on a blossoming music career...it's exciting, yet incredibly scary at the same time. There's just so much uncertainty, as there's always been.

I used to be scared on stage, but not anymore. Why would I be scared of holding a mic and singing in front of people? I have much bigger things to fear, and I'm not scared of those things.

I try to live without fear. "The most important thing is never to be scared at all." That's a line from a popular Israeli song. It's not a perfect translation, but you get the idea.

The truth is, I do get scared. Sometimes I let it all sink in, and I'm overwhelmed. As the days go by, it doesn't get any easier to believe that this is all happening to me. Then I regroup and somehow continue to put one foot in front of the other. One step at a time. One day at a time. It's the only way I know how.