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.

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.

"You could pick up a chick in an all-male prison." -To Remain Anonymous

"Who's that?" I asked, mesmerized by the pretty girl who had just walked into the room.

It was my last round of chemo, so I had accepted without much of a fight being put in a 4-bed room, even for five straight days.

"Oh, that's Laci, don't you know her?" responded my fun, friendly, amazingly wonderful caregiver, who certainly knows to whom I am referring.

"No, I don't think so," I said, still gazing at the doorway through which she had come before disappearing to the other side of the room and out of sight, yet through which she would once again have to pass in order to leave.

"She has a boyfriend," warned my informative friend.

"Oh, that's cool," I said, clearly trying to downplay my interest (i.e. play it cool). "I--I-- just thought she had a nice butt, that's all," I continued, immediately regretting my words as soon as I heard them leave my mouth. "Please don't say anything," I told my friend, trying to avoid the impending embarrassment.

I guess I should have known that my friend was about to go tell this Laci what I had said, anyway. I was fully prepared to face the consequences, and I have no problem telling a pretty girl when I think she's pretty. It's just that if I'm going to lead with a compliment, I try to come up with something more flattering than a comment on her butt. I like to at least offer the illusion that there lies some depth within me, beneath the bursting layers of charm and cynicism.

It wasn't until a later date that I learned of my ever-so-flattering comment reaching Laci's ears, and it came as a surprise to me when she told me herself that it had made her smile.

By this fourteenth round of chemo, I had developed somewhat of a nightly routine. First and foremost, being cooped up in a hospital room for five straight days, I liked to lighten the mood with some pain meds. I know, I know, it's a touchy subject for some, but then again so is cancer. I would then unplug my I.V. pole from the wall and drag it alongside me as I would begin to pace the hall indefinitely; my "nightly rounds."

If I were to have visitors, many times they might walk with me. On this night, my friendly caregiver was my walking buddy, and we did laps around the floor until she had to go fulfill her responsibilities to other patients.

Alone now, I noticed Laci sitting at one of the nurse's stations, and asked her if she would like to walk with me. As I expected, she told me she was busy, and I walked on by myself.

Hoping to be entertained, I began to treat the legs of the I.V. pole as a skateboard, pushing off the ground and jumping onto the legs of the pole to ride them down the hall. I kept myself amused for a while, until I pushed too hard and rolled too fast, losing the I.V. pole which almost ripped the line out of my chest as it went crashing to the floor.

"I'm alright," I announced, having maintained my balance and stayed on my feet, though nobody had seen my stunt.

Having flirted with danger long enough, I thought it was time to make my way back towards my room. Ironically, the only person I would find along the way was that same Laci.

"You didn't hear that, did you?" I asked, dreading her answer.

"Yes, I did," she said, clearly trying not to laugh. "It sounded kind of bad. Are you alright?"

"Yeah, I'm fine," I said. "Just trying to keep myself occupied."

"Well, just try not to get hurt. It is your last night tonight, isn't it?"

It wasn't long before I was sitting at the nurse's station with my friend and Laci, my new friend, having been formally introduced for the first time.

I had made it a habit to sit at the nurse's stations late at night, where they took their breaks, as I was comparable in age to many of them despite being treated on a pediatric ward. A night in the hospital can feel like an eternity with nobody to talk to, and I like to think, or at least tell myself, that those I would call my friends enjoyed my company as I did theirs.

"Do you want to hear some of my music?" I asked Laci.

"Sure," she said, "I just have to check up on my patients, first."

I walked back to my room with no expectations that the pretty nurse would ever show up at my hospital bed to hear my band's music about which she knew nothing. But, as luck would have it, she did appear before long, accompanied by another nurse I had not previously met.

I did my best to entertain them, play my music and make them laugh without being overly flirtatious and entirely obvious about my interests.

The night passed as did every other, and I was discharged the next day as I was at the end of every other round. I left as I always left, though this time with a little more fanfare, as I've already shared, and a smile for the girl who had made me smile, though unaccompanied by expectation.

I didn't know what to expect after the first contact, the first response, the first time I heard her voice outside the hospital. I knew that people like to say "good things happen when you least expect them," but I could never have expected anything to be this good.

I don't like to get my hopes up. I don't like to be let down. I don't like to build my expectations for many things other than myself. I like to think it's better that way when something, or someone, unexpectedly exceeds them.

I like when people surprise me. She surprised me. She hasn't stopped.