Chronicles of a
Cancer Patient

I will be going to chemo every two weeks for six months.

The particular kind of chemotherapy I am given is called ABVD.

There will be a passing exam at the end of this blog. Study hard.

Before all this I didn’t really know what the difference between chemo and radiation was, it all just seemed like some nondescript, horrible stuff that I hoped I never had to go through.

But the world keeps spinning, and it turns out chemo and radiation are two different things. I’m still not entirely clear on what radiation is, and I’m not sure I’ll even have to go through it, so I’m happy to just discuss chemo.

Chemotherapy is a treatment for cancer that involves an IV, a lazy boy recliner, and chocolate chip cookies. The lazy boys at the place I go are all green and covered in fake leather. They are lined up against a wall with dividers between them, giving the same sort of fragile privacy that similar dividers provide in men’s bathrooms.

Each lazy boy has a phone next to it. This is in case you are super busy and need to make important phone calls whilst they are pumping you full of the drugs that will damn-near kill you. I don’t know anyone this busy.

Each chair is also equipped with it’s own television that gets poor reception of local stations. This is convenient if you are really nuts about daytime television and you wouldn’t miss your soaps for anything.

The cookies are in the waiting room. I don’t know where they get them, but they are awesome. Clearly the bakery keeps the best cookies for us cancer patients. They probably use a pound of butter in each cookie, but I mean, what do we care, right? What, is it going to give us cancer? Gimme one of those damn cookies, and put more butter in it next time.

The rest of the cancer center is pretty sterile looking. The walls are painted with the soothing, tan color that they always use on those HGTV shows. Hanging in the corner is an embroidered acronym that cleverly uses the individual letters of CHEMOTHERAPY in a sad prayer. There are also small dolls dressed as nurses. This corner freaks me out.

The real nurses sit at a big desk and talk on the phone to doctors. Behind them is a big ice and water machine. The water and ice machine is the biggest piece of equipment in the whole place.

When you come for your chemotherapy session, they first take your blood and send it off to “the lab,” which must be a place very, very far away, judging on the amount of time it takes for things to go and come back from it. You then have to wait a few hours for the far-away people at “the lab” to test your blood.

An order is then sent to “the pharmacy,” another place in a far-off land, where they measure out and mix the drugs that they will be giving you. The drugs have to be measured exactly, based on your height and weight that day.

Meanwhile, you are still sitting in the lazy boy, watching your soaps and eating your butter cookies. The nurses hook up an IV to the port that was surgically implanted in your chest and give you huge amounts of “saline.” “Saline” is something that looks like water that is apparently not water that makes you have to go to the bathroom a lot.

Before the drugs come, the nurse, who in my case, is sort of cute, puts several drugs through your IV. First, she puts in a steroid called Decadron. This is to bolster your system before the other drugs destroy your system. Having Decodron is a lot like having a direct IV drip of pure, liquid caffeine.

Then the nurse puts Benedryl through the IV, which makes you extraordinarily tired. You might fall asleep at this point, but as you are unable to stop moving from the Decadron, sleep is not really an option.

Then the chemo drugs come. Their are four different drugs that need to go into you before you can leave. The first one is colored like red Kool-Aid. It’s a little frightening to see the red liquid floating down the IV tube towards your body. You think, “OH GOD, here it comes!” And the nurse is looking at you, and you are looking at the nurse, and suddenly it seems like all the other patients are looking at you, and you are looking at them, and the red stuff is coming down the pipe, and the nurse is looking at you, and you can’t stop fidgeting, and the room is getting smaller, and it’s coming and it’s coming and it’s coming!!!!

But then it’s not so bad. It doesn’t feel like anything. One by one they put all the drugs into you and it doesn’t feel like anything. You might as well just watch your soap operas, because it’s not exciting. I bring my laptop or my iPod and watch movies and listen to music.

Then they give you a few shots that will, again, help fix the system that the drugs just screwed up. By this point you are pretty sick of being stuck with needles and you have had your fill of butter cookies. They take out the IV and they tell you to go home, that’s it.

Dr. Crazy Finds Cure For Cancer

Mustard Gas was first used by the Germans in World War I to gas French soldiers. The gas only killed 1% of the soldiers exposed to it, but the side effects of the chemical were enough to significantly slow whole advancing armies and to contaminate large areas of land that could have been used in strategic positioning.

Mustard gas is a chemical weapon that is dispersed in aerosol form. There is little, if any, immediate effect, but 4-24 hours afterward, those exposed to the chemical experience severe blistering of the skin and lungs. Exposure to more than 50% of the body is usually fatal.

Between the 1940’s and the 1980’s, mustard gas (in liquid form) was one of the key ingredients in chemotherapy for Hodgkins Lymphoma. During World War I doctors found that exposure to mustard gas slowed cell division in those exposed to it, which is the main objective of most cancer treatments.

That’s right, mustard gas is used to cure cancer. Even today it is still used in some places, it is the first drug in the MOPP chemotherapy cocktail.

I, however, am treated with a newer kind of chemotherapy cocktail, ABVD, and nobody’s giving me mustard gas. It’s no wonder, though, that chemotherapy has gotten such an intimidating reputation over the years.

Revenge of the Vinblastin

Today was the second chemotherapy treatment. Peanut butter cookies today. I wasn’t as excited about that. Anyway, I’ve put on 9 lbs. in two weeks, so maybe that’s ok.

The cookie selection was really the most interesting part of the whole session. There wasn’t much to it. They took the blood tests, I saw the doc, they pumped in the drugs and there were no problems. I watched a movie and listened to music.

And I’m glad I’ve got my headphones (thanks Cindy) with me, because I kind of wanted to tune out the Room. Say what you will, but the community atmosphere of the Chemo Room isn’t really my thing. Picture it, the poor guy next to you is having trouble as the chemo burns away his veins, everybody in the chairs – especially the older ones – are pretty hard up and not in the talking mood, the nurses are going on and on about hemoglobin and saline drips, and somebody down the way is trying to drown their troubles in Oprah. I’m not saying that I really have a problem with being there, I guess I mean that I don’t want to be there anymore than anybody else would want to be there. My parents sat by me the whole time reading the paper, and I assume, listening to the cancer chatter of the Chemo Room. My poor parents, I don’t think I could read the “feel-good” Chicago Tribune and soak in the vibe of the Room’s suffering all at once. I was happy to escape.

The doctor was quick today. There is a Chemo Room in his office that is way worse, I think, than the place I go. He mentioned in passing today that I should maybe think about switching Chemo Rooms to come to his. A little marketing on the doctor’s part – very clever, pal. In his Chemo Room, all the recliners are facing each other, there’s no dividers, there’s one TV in the corner blaring daytime TV for the blue-haired, early-bird-special kind of clientele. There, I picture myself in forced conversations about youth and future plans, and possibly being awkwardly introduced to grand daughter’s when they come to pick up Grandma. Don’t get me wrong, I’m a social guy, and I’m usually golden with the blue-hair club, but when I’m at chemo, I just want to blend into the fake leather and watch my sappy movie.

I also heard from doc today that it’ll be more like 6 months of chemo instead of 4. Bring it on, doc.

The results from my heart scan are back. I have a mild enlargement of the heart (the left side for those of you studying for the test). This is called Left Ventricular Hypertrophy. The nurse says that it’s likely from both being anemic and the tumor being wedged up against the heart for so long. I don’t know much about it, but it’s mild, and it doesn’t sound like that much of a problem.

Mom and Dad took me home and I climbed up into my hammock between the trees (thanks Rick) for the rest of the afternoon.

And I went to work tonight and played piano. There was really no reason not to, and I like my job – playing piano and surrounded by people. I do find that my fingers are not as coordinated as before chemo, but it’s a very minute amount (that might be more related to a lack of practicing lately and perhaps not the chemo), and its probably imperceptible to people listening. Or maybe it’s not and people are being kind. Either way, it’s not a problem yet, but I have heard of this kind of thing happening later in treatment. No worries, future bosses, it goes away.

The echocardiogram results are in, and they say my heart is healthy.

It seems that there were some problems with my heart at first, but they seem to have been due to the placement of the tumor, and not problems with the heart itself. Now that Tito seems to have shrunk considerably, I no longer have those problems.

So, actually, that sounds like two good things to me – my heart is healthy and normal, and the tumor has shrunk.

I drove up to Madison last week to spend a few days with my brother and his wife. I ate their food, watched their TV and hogged the affection of their cat. I played a game with their cat, where I would sit on the couch with my computer, acting busy, and the cat would walk onto my face, shakily claw it’s way down my torso, and sit it’s butt on the “Send” key (or a similar key I wouldn’t want him to press with his butt). Actually, this game wasn’t fun for me. But the cat seemed desperate to play, and I figured I was a guest and all…

I came back to Illinois to catch a game of Pinocle with my Grandma and her friends at her retirement community. The ladies that play this game are very sweet, but they’ll bid you into the ground and steal your lunch money if you try to set them. (For those of you who don’t know the game, Pinocle is a game played with a minimum or three old ladies and a funny deck of cards, where you bet to see who has a gambling problem, then you try to “set” that person to prove to them that they are a poor decision-maker. The youngest person always has to eat a lot of cookies.)

There’s a mechanism in the human brain that makes you enjoy life in moderation, but cancer broke mine, so Saturday I went to Great America. It was half-price day, which meant that you’d have to also be half-insane to go, as the number of people in the small park was bound to exceed the population of Nevada. Nevertheless, the weather was crisp and sunny, and the rides were great (by which I mean they did not break while I was on them). The food, however, must have been made many moons ago by a sadist with a penchant for obesity. That was about as close to “Orange Chicken” as I am to Peking.

Great America has instituted a thing called the Fast Lane. For $15 you can buy 4 tickets that will allow you to go straight to the front of the line on (almost) any 4 rides you want to go on. One of two things will end up happening with this. Poor people will still have to wait in line, and rich people will never have to “associate” themselves with the squalor of those peasants waiting in the real line. Or, everybody will end up buying Fast Lane tickets and there will not be any regular line anymore, at which point they will need to create another level of line. Perhaps you could pay $50 and they’d blow you out of a cannon into Lake Michigan and put you out of your misery altogether. Either way, it’s an interesting mix of capitalism and classism that is touted as convenience.

Anyway, the day was an oppressive study in the sociology of crowds, but having, of course, purchased my Fast Lane tickets (hell yes I did), I didn’t wait long for any rides. As we left the park, I saw that the scrolling park marquee read, “Park crowded, please visit another day.” This is theme park speak for “ALL YE WHO ENTER MUST SUFFER! THE END TIMES ARE AMONG US! SAVE YOURSELVES!”

My fun was over by this morning. I woke up and dragged my feet getting to the hospital. They put me in the corner lazy-boy and hooked up the machine. It’s starting to get very routine. I think my body has adjusted to the steroids, so I don’t feel as antsy when I get them. The Benedryl knocks me out still, and I having an ever increasing disgust for the taste of the drugs. I was annoyed that I couldn’t steady my eyes on my reading after having the Benedryl. Out of obstinance I tried to fight the sleep, but it didn’t work.

There were less people in the Cancer Center this Monday. That means the regulars are either done with chemo, changed the day of their treatments for any number of reasons, or they are dead.

I weighed in at 182 lbs today. I started chemo at 149 lbs. Before cancer I was a constant 180 lbs. This session marks the half-way point in my scheduled chemotherapy treatments. Let’s hope the second half of treatment doesn’t beef me up like the first half has.

I’m working gigs all week. Like I said at the beginning, I’m going to keep playing as long as I’m standing. Cancer can’t beat me.

William

There’s a tall, thin man sitting in Room B, white and maybe 50 years old, adjusting his big glasses and thinking about trimming his greying mustache. He’s wearing a yellow-and-black flannel shirt under his red button-up sweater. His bony legs hardly fill his jeans, and he’s holding up his left wrist, but letting his hand fall. His body seems frail. He sits up straight on the edge of the bed, waiting. His bones hang off of him. His teeth are showing like he’s smiling, but that can’t be. His broad forehead is blanketed by the florescent lights coming from the ceiling of Room B, and I think he’s staring at me. His glasses are thick and round, so I can’t see where his eyes are, but I think they are fixed on me.

He scratches himself and lowers his wrist, looks around. He’s getting impatient, but he doesn’t seem like an impatient person. The nurses have left him there for maybe 20 minutes now. I wonder what he’s waiting for.

I’ve seen him before, sitting in a chemo chair, moving slowly and not talking. Baring his teeth like he’s smiling. Or a different time, with the white blanket pulled up to this chin, his mouth open a little, spilling it’s contents over his cheek, his eyes closed and his eyebrows raised.

The doctor comes to talk to him and hands him a piece of paper before leaving. Alone, the man reads the papers in his shaky hands. He slowly folds them, unfolds them and reads them again. He covers his teeth while he’s reading, and raises his eyebrows and peers out the door. Giving up, he folds them twice, into quarters, and puts them in his chest pocket, behind the red vest. He holds up his wrist again, like he’s looking for the time, but there’s no watch.

What a slow, thin man. He might have been a criminal, or a teacher, if he had the energy or the coordination. I think he might be homeless. He has large ears, and a reasonable nose that sticks out between his glasses and mustache like they are part of a set. He needs a shave.

He walks over, closer, and sits in the blood test chair. He’s staring at his wrist. Slowly, quietly, as if he were talking to rabbits, he says, “Oh, now don’t you hide. You were just there.”

The nurse turns to him, “What?”

“He was just here. I’m talking to this.” And he nods slowly to his wrist. I can see him better now, his eyes are dark and his hair is unkept. He is so tall and so thin, maybe if he didn’t move so slow his bones would break.

“Oh, you’re talking to it.” The nurse says, distracted. She’s preparing a needle to take his blood.

“I guess I’ll have lunch here. I’ll have lunch here.” And he shows his teeth, smiling.

“Yes, we all know how you like lunch here.” The nurse says back to him.

She ties up his arm and taps his wrist. “Are you still talking to it?” She holds the needle above his skin.

“Yeah. Come on.” He stares at his wrist.

He lets out a yell when she puts the needle in him, like a meow, but with too much saliva in the back of his throat. He looks away. I look away.

“William, did the doctor tell you about the chemo we’re going to give you? William, you’re going to lose your hair. William, did the doctor tell you that? Did he tell you that you’d lose your hair?”

William turns his head toward the nurse and covers his teeth. It barely gets out, “no.”

“Yes, you’ll lose all your hair.”

He is silent for awhile, but as he’s slowly wandering back to Room B, “I’m going to lose all my hair.”

“That’s right William. All of your hair.”

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.

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.