Chronicles of a
Cancer Patient

Vinblastin is the drug that puts the “V” in ABVD Chemotherapy. It’s a nasty chemical, or mix of chemicals (who knows?), that attacks not only the cancer cells, but also your nervous system. Vinblastin is to blame for the numbing of my hands and, now, my feet.

Given that my hands are, say, a significant part of my current “career,” the doc decided to cut the Vinblastin from this last chemo round, and from the next one, too. Nevertheless, the drug seems to have some lingering effect, and when my little pinky toe started to go numb yesterday, the doc decided he wanted to see me.

I think he just misses me. Maybe he’s getting used to me shuffling around his office with my eyes half closed and mumbling half-answers to his half-questions.

I guess I can maybe tell that this last chemo was missing a drug. It’s hard to pinpoint, but it feels like maybe this week is a bit less of a trial than the others. I stress “a bit,” though.

It might be all the drugs I’m taking to swing the effects of chemo. I think I’ve finally got it down. I count 16 separate medicines that have entered my body in the past two days. Three of them are chemo, the other 13 are all to dull the effects of the chemo. My body is 70% water, 25% drugs and 5% silly putty. Or at least it feels that way.

As I was leaving, the doc told me that the kid in the room across the hall was about to start when I’m just about done with. I glanced into the room on my way out and saw him. Younger than me, with dark hair and scared eyes. He should be scared. Poor guy.

I’ve been to Casablanca. As in, the place in the Humphrey Bogart movie. I was there when I traveled on that cruise ship last year.

Casablanca is a weary town. The only thing I could tell for certain is that the movie, Casablanca – which features dozens of rich, white, Christian, English-speaking men sitting around a high-class lounge owned by an American and harrassed by the French – has nothing to do with the realities of modern Casablanca.

Casablanca is a major town in a poor, Muslim country. Some people there are just scraping to get by, and some of the town is really dirty and caved in – like I imagine a bombed out Beirut would have been. Other parts of the town are beautiful and majestic, especially the government buildings and palaces.

It’s difficult to find a place to eat in Casablanca that is welcoming to women. Maybe that’s not true. But it seemed true. Men dominate the cafe’s and restaurants, and although we didn’t entirely understand the customs when we were there, we got the impression that women, even western women, weren’t supposed to be in certain places.

I bring this up because there’s an image I remember from Casablanca that I’ve never forgotten, and I’ve been thinking about it lately.

I was in Casablanca with a pretty girl that worked in the spa. Unaware of what Casablanca offered, we walked up and down streets in the heat – past the palaces and the Mosques, and the grundgy neighborhoods packed with satellite dishes.

A bird shit on her head as we walked down the street. I remember it really well. A doorman saw it and brought us just inside his door and cleaned her up with a dirty rag.

And I guess that’s sometimes how life is. A pretty girl with shit on her head.

I’ll Tell You What Tough Is

I saw a guy in the chemo room today with tattoos all over his arms and neck. He was a slight, asian man, maybe forty, and with the exception of the tattoos, he looked pretty harmless. I understand it’s awfully painful to get a tattoo, and I always thought you had to be tough to get one of those.

And to ride a Harley – maybe wearing leather and a bandana. Those things can all make a guy look tough. Sometimes a goatee can make a guy look a little ornery, and definitely a shaved head. If he’s beefy, then I’d stay away, and if he’s got beefy friends, well, I wouldn’t even say hi.

But what a silly, stupid idea. A guy spends his mornings shaping his beard into some priggish pattern on his face and I start to shake? Another guy has enough money to buy a Harley and a two dollar bandana and that’s enough to make me cross the street in aversion?

Forget it. I’ll tell you what tough looks like.

She’s wearing a wig. It’s too big, and you can see the extra lining hanging over her forehead. Her eyebrows are penciled in with a color that doesn’t match the wig. She walks with a stuttering gait to and from the bathroom. Her clothes are too small, and cheap. A IV stand – one taller than her – is next to her chair. Three bags hang on the stand, and their tubes disappear under her brown, velour jacket. Her eyes are like hot bayonets.

She has a son sitting next to her. He nervously jerks his head up at her every time she makes a move. He stands up when she gets up to walk to the bathroom, and although he’d like to help, there’s nothing he can do. He listens attentively when the nurse talks, but he doesn’t really understand everything that’s going on. Like, what is it like to lose your stomach lining? Why is there a rash on his mother’s chest? What does she feel when her friends ask her how she’s feeling?

His mother comforts him when she returns from the bathroom. She puts her hand on his shoulder, says, “I’m ok” and “Sit down, it’s ok.” She has the nurse get her son a blanket.

Now THAT is tough. She doesn’t have a Harley, or a bandana. She’s maybe 5′ 2″, and she couldn’t beat anybody up. She’s dying, like everybody else, but the difference is that she knows it. Maybe she knows when. Maybe not.

But she doesn’t give up being a mother. Or a woman. Or a person. That’s tough.

I’m not that tough, maybe. But I’m tougher than I was before this. I know what it’s like to sit through something horrible, or to live with a body tortured by chemicals. I’m tough enough.

But I have good days, and I have hours that go by without a thought about chemo. Some people in this mess don’t have that luxury. I’m lucky.

One more treatment. Let’s end this.

What Does Chemo Do To You?

Ok, this one might be a little too much information for you. But if there’s somebody out there that will be going through all this, you should read this. Or maybe you shouldn’t. People ask me on the bad days what chemotherapy is like, and although I consider myself articulate, I have a really difficult time explaining it. Its difficult to describe the forest from the trees, right? But I figure I’ll try to describe it a bit here. Careful reading this.

Chemotherapy side effects are worse than cancer, that’s for sure. With cancer, most of the time you’d hardly know it if some doctor didn’t tell you. I mean, I was pretty hard up by the time they found it in me, but sometimes cancer can go all the way to stage IV and you’d never know it.

Chemo, on the other hand, you can never forget that. Not for a second. There’s no ignoring chemotherapy. It invades every cell by the end of it. You spend months marinating in a stew of toxic wastes that are out to kill you. And I don’t think that’s overly-dramatic. You try it sometime and see if I’m not right.

Well, I’ll tell you what I can about chemo. I’ll go day-by-day.

I’ll start on Sunday, the day before chemo. Remember when you were a kid and you dreaded Sunday night because it meant that you had to go to school early the next morning? And maybe you hadn’t done your homework yet, and basically, your fun was just over? Or maybe its still like that for you, where you get to Sunday night and you start to dread the coming work week, and what hassles are going to happen this time, etc., etc. Well, its a little like that, but I think I can, without hesitation, claim that my Mondays are worse than yours.

The dread of chemotherapy now starts much earlier than Sunday. At first it did start on Sunday, but then I realized how bad it was, so I moved the freaking out back a few days to Friday. Then Wednesday. I knew it was bad when the dreading would start on Friday, 9 days before my chemo treatment – before I’d even recovered from the last one. But now I dread it all the time. I get no rest from the dread of chemo now, because I know it gets worse every time and, save a few surprises, I know just what’s going to happen to me.

And I suppose I should feel good that I only have 2 more treatments. That’s what people keep saying, at least, “Hey – only 2 more, right? That’s gotta feel good.” It doesn’t. And people hate that answer. If I’ve learned anything from the progressive side-effects of chemotherapy treatments, its that the last treatments will be the worst. I don’t look forward to them, and knowing that they are coming doesn’t make me feel any better, even if completing them means its all over.

I try to distract myself on Sundays, and thankfully, I think everyone around me tries to do the same. The only thing you can do is try not to think about it. The doctor gave me anti-anxiety pills to calm down, but I don’t like taking them. So I just try not to let my mind rest on it.

I sleep as late as I can on Mondays. I don’t want to get up any earlier than I have to, because I know if I have time to think, I will. I take a shower and put together a bag of stuff. I usually bring my computer, my iPod, my headphones, maybe a book. I usually never use any of the stuff because the Benedryl knocks me out, but I bring it anyway. It makes me feel better holding onto something.

Chemotherapy is about a 4 hour process. They take your blood and start your IV right away. They fill you with steroids, saline and Benedryl to get your body ready, and they wait for the chemo drugs to be brought up from the pharmacy in the bright green zip-lock bag they come in.

I have a mental reaction to the smell of the alcohol swabs and taste of saline now. They use a lot of alcohol swabs during the whole process. They wipe down your port with alcohol, they swab the ends of the IV before they insert the vial for your blood, or the syringes full of chemicals. I can’t smell or taste the chemo itself, so I guess my mind has just decided that the bad stuff must smell like alcohol and taste like saline. The reality, of course, is that the saline and alcohol are the only things that are good for me in the whole process, but that doesn’t stop me from wincing whenever I smell or taste them. I know what’s coming when they are around. Sometimes when I’m not at chemo I’ll remember the smell of the swabs or the taste of the saline and I’ll jerk my head to the side and try not to puke. I really freak out sometimes.

You don’t really start to feel anything until an hour after you’ve been given the drugs. First you go to the bathroom and pee red. Maybe that’s too personal to tell everybody, but I’m telling you anyway. It freaks me out every time. I always forget its going to happen. It’s from the Andreomyacin, which is a red chemical, and the first drug in the chemo. Some people pee red for days.

The heat starts about then. The heat comes from inside me, from my chest I guess, and radiates into my face. By Tuesday I’m flush red all over, and my face is puffy and hot. My skin starts to feel softer than usual, I don’t know why.

A heated, sharp indigestion starts about the same time that the hiccups start. My nurse thinks the two are related. I think its all the same thing. The hiccups last for two days. They are double hiccups, where your diaphragm pulses twice most times and really shakes your body.

The nausea sets in immediately, despite all the drugs they give me. It’s a sharp nausea, like someone is stabbing you in the stomach, and trying to pull your throat out by reaching in through your mouth.

But, despite the nausea, and despite the fact that eating just makes it worse, you are ravishingly hungry. You would eat rice cakes willingly, you are so hungry. You eat until the nausea takes you over in a big wave, and you lay down and cry and wait for it to pass, and then you eat again, until the wave of nausea comes again, etc., etc. Its awful.

But the effects of chemo aren’t just in your stomach, chest, or throat, they are all over. Your eyelids droop and the muscles in your thighs twitch, and your abdomen expands with all the food your body won’t digest (go get some ex-lax and fiber bro, its going to be a long week…).

By Wednesday my legs are usually dog meat, but the hiccups are gone. The heat is still around, but its second to the sheer exhaustion. I mean, absolute EXHAUSTION. Not like “I’ve had a long week and I haven’t slept much,” or “I just lifted weights” kind of exhausted. Its much more powerful than that.

Last time, I woke up with three fingers numb on Thursday. The doc says that’s nerve damage from the Vinblastin. I say that’s some really nasty stuff for pianist. He’ll cut out the Vinblastin if it happens again this time.

I don’t really know when it happens. Not right away. But sometime between Wednesday and Friday my mind starts to fall apart. It lasts for 4 or 5 days. I can’t remember people, or conversations, or I’ll stop sentences halfway because I can’t think of the word. It goes away, though. I think.

By Saturday and Sunday I’m recovering, and I’m usually ok by Monday. Then I have one good week to run around like a mostly normal person, but with more dread, until I get hit again. The exhaustion never totally leaves me, and I can’t stand very long, but its not as bad during what I facetiously refer to as my “good” week.

Add “recording an album” to the list of things I’m not scared of anymore.

I’ve recorded about half of an album I will be releasing in 2006. The album will be called “Straight Ahead” and will be a collection of some of my favorite jazz standards, played solo. Several of the songs I’ve recorded during treatment and posted here will be on that recording. I believe releasing an album would be a fitting way to start my new life after cancer.

Before Classmates.com started to fill up my junk mailbox, it was Friendster. “You gotta join Friendster!” “Are you on Friendster yet?” So I joined Friendster, and now everybody is publicly aware that I have, like, 3 friends, and am a big Friendster-loser.

I even joined Match.com and Yahoo Personals back during the dark, lonely days when that sounded like a good idea (I’ve had better ideas).

And now there’s 14 other sites that I HAVE to join. I get invited to MySpace by people I’ve never even met, and don’t get me started on Tricia’s new love of Facebook.com.

But I joined MySpace.com as a band, and that seems to be kind of cool. You can go there and listen to my tunes and read about me – a lot like you can…uh…here, for instance. Or at Friendster…or at Classmates…

Instead of filling up your junk mailbox with an e-mail asking you to join MySpace and – oooh – rank me (that’ll show those cool kids at Friendster!), I’ll just tell you here. Go to this link:

www.MySpace.com/djhahn

MySpace is actually kind of cool. Mitch has one of his new songs up at his page: www.myspace.com/mitchcorsoband. Click on the tune “Moment Ago.” It’s good.

Its been a rough week. I tend not to mention things like that because it sounds like complaining. Somehow the words “pain” and “discomfort” sound like complaining no matter what other words you surround them with. But I’m not complaining.

I woke up on Thursday and I couldn’t feel the ring finger and pinky on my right hand. That was weird. They were all pins and needles like your legs get when you sit in one place too long. It would be a nuisance to most people, but for those few that make a living with their hands – like surgeons and, ahem, piano players – its more alarming.

I had a gig that day. I played in a trio for a local jazz choir concert. I played well, I think, but I missed a few notes up at the top – up where my fingers had been replaced with things that looked like fingers but felt like nothing.

The fingers weren’t really a problem, the problem was just keeping it together enough to perform. It had already been a long several days since the chemo struck me down on Monday. I hadn’t slept well, my muscles were empty and I couldn’t focus very long on anything worthwhile. It really took all my concentration to act normal during rehearsal and especially during the show. At one point I looked at the music and I thought, “Well shit, what do all these weird dots and lines mean?” Fortunately, that was only a passing thought, and by the time the song was counted off, I remembered how to read music and play the piano.

Here’s a funny one – right before the show this girl walked out onstage setting up chairs and my first thought was, “Wow, she’s hot.” A second later I realized that was my girlfriend (“Oh. Hey!”). So that one worked out really well for me.

Its not that I’m stupid, or amnesia-like, its just as if my brain needs a little de-fragmenting. All the information is disorganized inside my dome and it takes a while to untangle the cords and find what I’m looking for. It’s what my nurse calls “chemo brain”.

Sometimes I scratch my head and although I swear I’m scratching right where the itch is, I’m not hitting it at all. And I thought I saw a flash of light last night when I was laying in bed trying to sleep – at 3 am when all is still that there are *not* any flashing lights around. Weird.

My hopes are up that they might back down on some of the drugs when I tell them about the numb fingers. But what if they back off on the drugs and then the drugs don’t do the job?

And just how long am I going to have to walk around with this tangled brain? Sometimes I’m afraid I’m going to start hanging out with my cat because he’s suddenly so smart. (Note: Our cat, Charlie, likes to go outside so he can come back in so he can go outside so he can come in so he can go outside so he can…etc.) And how, exactly, will I know when I’m not dumb anymore? I know a lot of idiots that have no clue that they are. I’d tell them, but its considered rude.

I would have had a gig tonight, but it got all messed up. See, I’d slept about 2 hours the night before (I don’t know, maybe it was the flashing lights or our genius cat that kept me up). I’d had a rehearsal for a gig that morning, and when I came home I was just exhausted. I took a Tylenol PM to try to get a nap in, and then they lady called me. She said that the piano player for their Christmas party had just cancelled and they needed somebody quick. It’d be a 6 hour gig at my solo rate (extra points if you know my rate for solo work) – so you do the math. Let’s just say that would have netted me more in one night than I usually get in a whole month from other gigs. But her boss wanted to hear a recording first – so I gave her the address for the homepage and waited for her to call back.

And waited.

And waited.

And then I fell asleep. I can’t blame myself, I definitely needed it. But I missed the call, and by the time I woke up and called back, they’d already filled the spot with some other lucky schmoe. Damn.

Not that I would have lasted very well on a 6 hour gig. (That’s considered a reeeeally long gig in Cocktail Gigland. 6 hours is a long time to sit still in one position and move your fingers up and down.) But I would have done it! Damn.

Anyway, I’m going to go hang out with the cat.