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.

My chemo nurse said something last time about how great it was that I had such a supportive family during all this. That is definitely true, and I understand what she means. But I couldn’t help but think, are there families out there that are not supportive? Are there families out there that say, “Now honey, you know I love you, but I just don’t support your decision to have cancer.”

Or maybe it’s worse, maybe there’s a whole group of Tumor Rights activists out there that have bumper stickers and t-shirts that say things like “Metastasis Is a Right,” or “Tumors Have Feelings Too,” “Chemotherapy is Murder,” etc.

Perhaps when I go in to the Cancer Clinic tomorrow for chemotherapy there will be a big crowd of Pro-Tumor protesters with signs and megaphones, chanting and throwing paint on me.

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 fall weather makes me think of Barcelona, with the Spanish leaves drying up and falling onto the cafe tables on La Rambla. The leaves don’t change to pretty colors like ours do, but all the haunting architecture in that city makes it the best spot for October walks. The air comes in from the Mediterranean, and it sweeps the leaves across sidewalks, into the stores, and into the churches. Sometimes it feels like it’s always fall in Barcelona.

I wouldn’t mind living a Spanish autumn this year, rather than an autumn filled with chemotherapy. Because you know after this comes Chemo Christmas – and you know what that crummy Chemo Santa Claus always brings good cancer patients – more chemo. I’d rather have coal.

I’ll be going back in tomorrow for another treatment. I expect to be fully wired and entirely disconnected by this time tomorrow – but you never really know what the Chemo Fairy will bring you each time you visit. I’ll admit I’m a little anxious about it. I try to consciously curve this Pavlovian response, but it seems my instincts are not held by reason.

So they’ve given me something called “Ativan.” I had told the nurses that the treatments were starting to make me nauseous, so they arranged the prescription. Although the drug is used to control nausea in chemotherapy patients, it seems to primary be an anti-anxiety drug. As the astute, American philosopher Elbert Hubbard, once said, “The worst thing about medicine is that one kind makes another necessary.”

I might add that a Luftansa flight to Barcelona tomorrow morning would cost $375. That is <1% of what chemo is going to cost tomorrow afternoon.

Two days out from my fifth treatment and I am an overblown beach ball. My hands, my arms, my belly, my back…everything is just so…expanded. Part of me wishes that my nausea would finally come to fruition and it might deflate me. But the little pink pills I take twice a day make sure that I will never deflate with such a vulgar technique. Bulemia is probably not a good habit to stack on top of cancer anyway. Ugh, somebody beach this whale.

Dad’s going to be in the paper in a couple days for being such an extraordinary accountant, etc., so the photographer came to the house today to capture the essence of Rick Hahn in his natural environment. Somehow Mom and I were convinced to be in the picture with Dad, too. That might have been alright, I’m not shy, but in the past few weeks I’ve developed this unfortunate reaction to the Bleomyacin (chemo drug #2). The nurse calls it a rash, but I call it my face.

Fair enough, I suppose, Bleomyacin is known for it’s skin reactions – but couldn’t it be somewhere else? Like on my arm? Or my ankle? Or, for god’s sake, ANYWHERE that’s not going to be plastered all over the local paper? Come on now, my face?! Is that necessary? What kind of bad karma have I gathered that makes the noticable side-effect of this treatment located on the one patch of skin people look at?

I’m not a pretty boy or anything, and I’ve never spent enough time on my looks to invest much emotional attachment to them, but, by design, they are sort of…noticable. So it can be difficult to restrain an identity crisis everytime I look in the mirror and I’m either 10 lbs heavier, 10 lbs lighter, karma-faced, puffy, or basically – staring at somebody I’ve never met.

I don’t have much to report this week about me. I had chemo on Monday, and it was a bad week, worse than the others. My hands went numb again, and I’m almost glad because that means the doc will take out one of the drugs for the last couple times. I played one gig all week, a choir concert for a good friend, and it just knocked the hell out of me to do it. It was on Thursday, and usually I’m ok by Thursday, but I guess it’s getting worse.

But whatever, it’ll be over soon. 2 more chemos, and at least I beat it. I guess once I heard that I beat it, my mind started to turn to future things and plans, and just getting on with my life. In that way, these last few chemos seem like such a nuisance. I don’t think I would have described them as a “nuisance” five months ago. Also, there are some other medical things going on in the family now that seem more important, and that’s saying something.

Life is rolling along, despite the cancer treatments. I can’t say much yet, but I’ve got my fingers crossed that I might get a short story published in the next year – more on that another time. I’ve heard from some people interested in becoming students, and once chemo is finished next month, I’m booked solid with gigs until April. (I’m booking May now, anybody want me for May?) And I’m still working out recordings for the coming CD.

In a way, I sometimes think that it’s been nice to have the past 5 – soon to be 6 – months to sit and reflect on life while in a semi-desperate situation. I mean, I’ve come up with a lot of good thoughts during this time, and – no doubt – grown up double quick. I’m infinitely closer to several people – my parents, my brother, my girlfriend – and that’s a really nice outcome from a terrible situation. When I first started I knew that cancer would teach me things, and I hoped that I’d be wise enough to find the lessons – and I think I have learned a lot.

I know not to take health for granted. I was good, before, about living life deliberately, but I’m even more set on that now. I know the value of a relationship, and what it really means to stick by somebody.

They say that cancer mellows people out, that survivors are pretty chill people. I’d say that I’m a lot more mellow about somethings and a lot more vehement about others. I’m a lot more uppity about living life on my own terms and not following the pack, I used to waver more on that subject before this. Now I know that life is too short to live someone else’s and call it your own.

Anyway, I know that a lot of other stuff and I can’t think of right now.

I’ve got two more treatments. Stick with me. I’m almost done.

I Was So Nauseous That I Ate Everything

I went in for treatment #9 yesterday, despite not having any cancer to put it towards. The doctor said that I was in complete remission, so we would do 2 “consolidation” treatment cycles to make sure. That means 4 more treatments, which has me done with this crap on January 9th, 2006, assuming all goes well.

My blood counts are still high and my hair is sticking around, and in a lot of ways, you wouldn’t know I’m a chemo patient unless I told you.

And speaking of, I suppose I should be more careful about when and where I tell people. When we went out Wednesday night to celebrate the PET scan, I told every person that would listen, or was at least in ear shot. The people that knew about my diagnosis were happy to hear it, but those friends of mine that hadn’t heard were a little taken back.

“You got what?” They would shout over the music.

“I beat cancer!”

“You’re being transfered?”

“No,” I’d shout back, “I BEAT CANCER!”

Then their face would go blank and sheet-white and they’d mouth, “You had cancer?”

“Yeah, but I beat it!”

Still shocked, they’d say mouth again, “You had cancer?”

Anyway, it was probably kind of a buzz-kill for those who hadn’t heard, but maybe they had just missed the point of the good news.

So. 4 more treatments. I’ve decided that now that I’ve beat cancer, I’m not going to take these treatments John-Wayne style. I walked right into the chemo room and before I even sat down I was asking the nurse to just put me out. Just give me some of that sedative stuff and wake me when you’re done. I don’t want my brain to have anything to do with it this time. And while you’re at it, I want some pain relievers, and some laxatives (believe me), and some fiber (again, just believe me), and I want more anti-hiccup stuff, and antacids, and the strongest anti-nausea stuff you’ve got. Give it to me now.

The session was pretty easy, being asleep and all. William was there, and so was Shirley. The two old guys down the way were talking about not being able to taste their morning coffee anymore, and their wives were talking about how their husbands can’t taste the morning coffee anymore. Shirley told me she was “really praying” for me, although I can’t help but think that there are others that could use it more. I heard William give out a growling scream from one of the rooms about half-way through – probably something with needles, that guy hates needles.

I woke up and went to the bathroom and turned the water red – that was how I knew they’d already put the drugs in. It was kind of a surprise, but I was glad that I slept through it. Like I said, forget that John-Wayne, take-it-like-you-want-it nonsense, I’ve been through enough.

Because I’ve gained 40 lbs since the beginning of treatment (yeah, I know, it feels like a lot to me too), they had to up my dosage of chemo. That means more of everything – Bleomyacin, steroids – everything. By the time I came home, I was so nauseous, I could hardly wait to eat everything in the house. (It’s a hard feeling to explain.) I had a chicken stirfry, and two chicken sandwiches, and chocolate and then, later, a whole spread of Kentucky Fried Chicken dinner. I reeeeeeally hate steroids. I swear I’ll be 2 bills by the end of this nonsense.

3 more treatments to go. Take it Elvis:

I’ll a-have a b-b-Bleo Christmas with chemo
I’ll be so bloated, just taking that drano.
I’ll be doin’ alright, by January 9th,
but I’ll have a Bleo-o Christmas.

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.