Sunday, September 26, 2010

The New Next Step

This week begins the new next leg of my treatment, made necessary by the revelation that the old treatment plan was no longer working. I'll be heading back to radiation, this time for spots on my neck and hip. I'm hopeful that the radiation therapy will be as successful as it was the first time. If you remember, I had seven weeks of radiation on my shoulders, and fortunately, it seems that my shoulders are no longer as worrisome as they were a few months ago.

I will also begin a new chemo regimen, which includes a daily oral medication and an IV infusion once a week. It's going to be more low dose chemo, since there's a limit to the dosage I can be given during radiation. I recognize the oral drug as one I was given through IV during my fourteen rounds of high dose chemo, days I recall fondly as full of wondrous enjoyment...That was a joke.

The doctors think I'll be able to tolerate this new regimen fairly well, since I've managed to push through everything as well as I have so far. I'm sure I'll experience the regular nausea and stomach pain, and the docs aren't sure whether or not I'll lose my hair. We all know how anxiously I awaited its return, so you can probably guess my feelings about possibly losing it again.

If the chemo can at least keep the tumor from spreading, then we can go after the new spots a few at a time with radiation, until they're all gone. It sounds incredibly simple. In practice, it's probably not. There's just no way of knowing what might happen with the new treatment.

The journey is obviously going to take longer than I had anticipated. I get that, and it's fine. I'm okay with it. I'm in a much better place now than I was a year ago; better than some had predicted I might ever be. But again, I don't care about the numbers. I don't care about statistics, and if you tell me I can't do something, I'm going to try to prove you wrong. Doctors are no exception. Check that: If you tell me I can't do something, I'm going to try to prove you wrong, especially if you're a doctor. That's the way I am. Hopefully it will serve me well.

I understand that having a positive outlook on things is thought to help people in my situation. If I believe I'm going to get better, then somehow I have a better chance of actually getting better. But at some point, I am at the mercy of doctors and drugs and whether or not they're capable of killing this monster inside of me. It's a helpless feeling. I've been told to redirect my anger and frustration towards the illness. Trust me, I've said things to my illness that should not be repeated in a public forum. I'll continue to focus my anger in its direction. I just hope my words and wishes hurt its feelings to the point that it's incredibly vulnerable, and this new treatment kicks its ass.

The right mental approach can only go so far. Maybe it will combine with this new drug and the new form of the old drug to create an unstoppable force; a force for which the toughest, nastiest, sneakiest of opponents will be no match.

Tuesday, September 21, 2010

A Little More Than Just A Bump In The Road

I always figured I knew the beginning and the end of my story. The beginning, of course, was when I got sick. The end, then, would be when I'm no longer sick. In my mind, the bookends were there. All I had to do was fill in the middle, make it interesting, and everyone would love me for it. I suppose that's not exactly fair to you, reading my story, wishing me well and hoping that my next entry might be the one in which I bid good riddance to this disease.

I figured, "Well, I'm the one who's sick, I'm the one who has to deal with all of this, so why shouldn't I exploit it for what it is?" Everybody loves a happy ending; everybody likes to feel uplifted; to believe in miracles. People just want to be inspired, right? I think we maintain faith in an almighty power in order to feel less alone; we tell ourselves that there's some sort of plan for us all so that we don't feel like we're just floating, bouncing around, back and forth with no direction and no purpose until one day it's over and we stop.

Last night, I got the results from my most recent PET scan, taken last Friday. A lot of the trouble spots looked better. But for the first time since I began treatment, there were some new spots that hadn't been there before. And for the first time, I wasn't so sure about everything.

Given the hand I've been dealt, given the numbers and statistics, it was more likely than not that this would eventually happen. I knew that all along, but as long as everything was still going in the right direction, I kept it as far from my thoughts as possible.

It doesn't mean I'm pressing the panic button. It doesn't mean we have to sound the alarms. It means that what we've been doing hasn't been working as well as we'd hoped. It means we have to find something else that will work. It means we have to turn back around and start heading in the right direction once again.

I'm not scared of dying. I've said that before. And right now, at this point in time, that's not something I have to face. But as much as I want to be strong, to put on a smile, I am scared of not knowing. I'm scared of not knowing whether or not we can find something that will work. I'm scared of not knowing how long it will work until more trouble spots mysteriously appear.

My goal has been to beat this thing. I've wanted to get rid of it, put it in the past, and use it to help me become a better, stronger person. I realize now that I may never fully get past it. It may be a part of my life for as long as I'm still living. I never wanted to be going through treatment until my final days, but I realize now that I can handle the most brutal of treatments that they can come up with. I'll gladly go through treatment until my final breath, if it means managing my disease and keeping me alive.

I want to live until something else kills me. I don't care what it is, just not this.

It's just one test. There will be more tests. Plenty of them. They're just more doubts. There have always been doubts. There are more people to prove wrong. I still have time to do it.

I promised never to sugar-coat anything. I'm committed to telling it how it is; expressing things as they really are. Right now, they're not as good as they were before. It doesn't mean they can't get better again. In fact, I'm expecting them to. And I'll continue to tell my story, good and bad, the way it really is. You can expect the truth, whatever that means. That's a promise.