Chronicles of a
Cancer Patient

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.

To the little spider perched above the shower head, watching my hair slide down the drain:

Dude.
A little privacy please?

It was some awful, administrative mistake that God made when creating me that made me start losing my hair at 15. At first I ignored it, like you do, but it became increasingly difficult to ignore it when no one else would. I think that men make fun of other men for mostly transparent motives, and this was certainly the case in high school, when guys would wait until a really hot girl was within earshot to start talking about my disappearing mane.

So eventually, you start to acknowledge it. With panic. You buy the hair products, you perk up when the commercials come on on the radio, you start to notice men with plugs (and picture yourself with a plug-installed, picket-fence hairline), and you freak out. I would bet that most men do this, but perhaps not with the fixation that I did at age 17.

People do, and I don’t believe this is a figment of my imagination, start to look at you differently. It’s difficult when you are the only person balding in your age-group. People begin to identify you by it, “You know. Dave. The balding guy? He has no direction in life? He lives with his parents? Yeah, right, Dave.”

You go to bars, and you end up feeling self-conscious about how much older you look than the group your with. Or worse, you go somewhere on your own, and have to somehow slip your age into every conversation to make it known that you are, specifically, “not old.”

Of course you start to think about girls. No, in fact, this is the first thing you think about, if not the only thing you think about. You sit in that one biology lecture freshman year, when the prof is talking about the “Law of Natural Selection,” and you look around at all the big dorks sitting around you and you think, “These jerks are going to get all the girls, just because their scalps are hidden by those stupid hair-do’s.”

Early on, you start to consider shaving your head, but you think, “OH MY GOD, how ridiculous would that look?!” I mean, who knows what shape your head is under that awful mess of hair products and genetics? Christ, whatever you do, don’t shave it!

But then a few years go by, and you start to realize that girls could actually care less. I mean, just finding a guy that age that talks in complete sentences and doesn’t fart on them is enough to inspire everlasting love. Hair? Who cares about hair?

So you start to shave it close. You feel better, your friends feel better, everybody feels better. You don’t look like “that guy,” who’s trying to pretend he’s not losing his hair. You’ve grown into it and you look way better, and nobody cares.

But now, here I am, with cancer. I’m going through chemotherapy, and all my hair is supposed to -*poof* – fall out. Considering the poor reputation my hair follicles have – I’m bound to be running around like a mexican hairless within the first week, right? I’ve been balding for nearly a decade, I am ready for this. I might even look better totally bald, who knows.

But weeks have gone by now. From what I’ve read most cancer patients have, by now, lost most, or all, of their hair. Not me, man. I’m not bald. My hair is like, “Chemo? I don’t see no chemo.” My hair is holding on to my head with an impetuous commitment I could have only dreamed of at age 17. My hair is NOT leaving!

What the hell is this? Who does my hair think it is? Richard Gere? Has my hair seen what’s it’s been doing to me for the past years? It is confused with it’s role? Fall out! That is what you are good at!

My god, am I going to be one of those guys that goes through chemo and doesn’t lose his hair? How unlikely is that?

I would also like to state for the record, that those of you who tell me “it might grow back thicker!,” etc.: No way. You seem to assume that I want hair again, which is absolutely not the case. I look at these poor saps running around with “hairstyles” that they have to spend so much time on and I think – “Thank god I wake up looking the same as I do when I go to sleep.”

But yes, it’ll probably grow back thicker. On my back, I mean.

I walked outside the hospital and sat on the bench that people sit at when they wait for the bus. I read the report and I cried.

“The current PET study is unremarkable. On the prior study the patient had marked abnormal increased uptake in the mediastinum, right paratracheal and right hillar regions. On the current study, this has resolved completely and is no longer visualized.”

I want to run and jump and scream and climb a tree. No, I want to take a plane ride once all the way around the world, waving out the window as I go. I want a goddamn ticker tape parade right down 5th Avenue!

I’m tough as nails. I’m a cancer survivor.

I AM A CANCER SURVIVOR!

Like a man nearing the end of his years, I’ve been looking back nostalgically on all the posts in this blog. The newspaper called a few days ago and asked about the blog, and about why I did it, and what I’ll do with it now.

I don’t know. Chemotherapy is almost over. This blog is about chemotherapy. After this last treatment is over on Monday, I don’t know what I’ll write. Maybe a few entries about recovering from chemo. Maybe an entry or two every time I go see Shakey McShakerson in his big trailer.

It seems like they might mention the blog in the paper in the next couple days, which I think is sort of exciting. So I looked back on some of the entries, to see if they were any good. Some of them aren’t crap at all. Some of them are good.

What’s more interesting to me, I guess, is my progress through this chemo process. I feel like such a tool reading some of the earlier entries about chemo. It’s nearly embarrassing, sometimes, to see me talking, early on, about what chemo was, and what chemo wasn’t.

Like I had a clue.

And the cockiness I have in some of the earlier reports of treatments – oh man, I hardly even remember the former me that wrote those. How on earth could I have come out of treatment #3 with such a vibrant pride? Was I psychopathic? Was I an idiot? Was I kidding? It was like I was almost enjoying this somehow. Good grief, who was I?

I don’t feel particularly cocky about chemotherapy anymore. I don’t feel particularly blessed to have gone through it. And I don’t feel like it was a learning experience that “rained down” from above, or anything ridiculous like that.

I feel like maybe things changed around treatment #7, when I started noticing the sadness more in the chemo room; when I finally got it through my head that surviving cancer wasn’t just another one of my adventures I could brag about later. When I stopped trying to find the stupid silver lining in everything and then realized that I had to keep going, with or without a silver lining.

Maturing seems to be more about accepting disappointment than anything else. Experience is useful, but I guess it doesn’t really teach you anything unless it’s disappointing. Does that make sense? That seems to make sense to me.

I don’t mean that to sound sad. I’m not sad. Not sad in the simple way I was when I first got diagnosed. I just feel…complicated. My feelings about cancer are complicated. I don’t know who that young kid was that wrote the early posts in this blog, that young kid that tried to sum up cancer in simple, easy-to-understand entries, that recorded songs, and took pictures like it was a summer vacation he might want to re-live later. It’s all a lot more complicated than his writings suggest.

I went for a walk in the woods yesterday and I fell in the creek. Yeah, I know. It was not my finest moment. If there was a video of the incident you’d probably want to replay it in slow motion to see the look of disbelief on my face right before I bit it. Twenty years I’ve been walking in these woods, and I’ve never fallen into that creek.

The good news is that I found out that my boots really are waterproof. The bad news is that my jeans aren’t. Or my socks.

Now, I could blame it on chemotherapy and say that my legs were rubbery and my head was cloudy, but that’s not really the case. I felt ok. There wasn’t anything medical about it. I just fell in the creek.

And isn’t that nice? I don’t think I’ve done one thing in the past six months that I didn’t blame on drugs, or cancer, or taste-buds, or hair follicles… It’s nice to do something stupid on my own for a change. What a relief it is to see a hint of my old self again.

I had much less patience with this last treatment than I did with the others. Waiting for my “bad week” to end, I was bored, and antsy, and ready to get rid of it. But that didn’t change any of the side effects. It probably made them worse, really, considering how little I cared to baby myself through them.

But now the bad week is mostly over. My body is recovering at about the same speed as I’ve become accustom to. I gained 10 pounds on Monday and lost it by Saturday. Tuesday was awful, but Wednesday was better.

Despite my last chemotherapy treatment having taken place just a short week ago, it feels like chemo was a long, long time ago, and happened to somebody else, whose name I don’t remember. Still, I’m quick to find my fatigue when there’s some chore I should do.

Really, I’m just tired of the whole thing. I’m tired of living with it, and I’m tired of talking about it. I’m ready to just put the whole thing entirely behind me and look ahead. I’m ready to start a regular schedule again, even if my body isn’t. When my friends ask me what I’m up to, I’m ready to talk about something other than all this. I’m ready to become a person again. I’m ready for the next challenge. Cancer? What cancer?

I turn 25 today. 25. Wow. You know, I hardly made it this far.

I never thought that getting to age 25 would end up being a struggle. I guess I never really considered it, but if I had, I suppose I would have imagined my 20s sailing by without much of an effort.

You don’t think about this kind of stuff before it actually happens to you, right? And I think it should be like that. Don’t worry about cancer. If there’s any advice I’d feel confident giving, it’d be that: just don’t worry about it.

Don’t worry about tumors, or needles, or doctor’s bills, or if you’d be brave enough, or strong enough. If you spend any of your life worrying about what awful thing might happen to you, you’ll miss all the things that do happen.

We live in a forward thinking society, surely. It’s necessary to plan ahead, especially financially and vocationally. If you don’t plan a future, you might not have one when you get there.

Nevertheless, I think about it like hiking. I notice a funny thing when I’m hiking. I’m always falling into the creek. No, I’m kidding. What I notice is the dilemma of hiking – that you are surrounded by beauty, but if you look up long enough to appreciate it – you’ll trip on a rock, break your leg, run out of food and die a lonely death – isolated in this stupid forest, on this stupid mountain, with these stupid birds…circling above…who look hungry…

Anyway, you get the point.

It seems like life is like that sometimes, too. If I stop long enough to appreciate how my life is going, I inevitable end up feeling like there is something more important that I should be doing.

And the truth is that there probably is something more important that I should be doing, but that’s not the point. The point is that hiking isn’t just about walking.

And while I’m here, I have more to say.

Yes, I beat cancer. I totally beat cancer. And I hope that that gives others hope – but (and this will sound funny) – not too much hope.

We’re all gonna die. There’s something really valuable in realizing how short life is, and how fragile it all is. There’s something good about feeling life desperately flash by. There’s an part that I like about feeling like you should finally get off your ass and do something with yourself, or for others, before you die.

And there’s danger of losing that idea if we cure all the diseases, and heal all the sick, and put death back into storage with all the other alarming thoughts we don’t want to think about.

Not that I’m saying we shouldn’t heal all the sick and cure all the dying, that’s not the point. The point is that I’m still going to die.

Wow. After all this writing about cancer, it still feels awkward to write about death. Kicking the bucket. Sleeping the big sleep. Tumbling down the hill. (I made that one up.) It feels like I’m being rude, or doing something I’m not supposed to. It feels like people are going to be mad at me for talking about it.

That’s how little we talk about it these days.

Not that long ago, death used to be a way of life, strange as that sounds. People were dying all the time. The infant mortality rate was astounding. People died of plagues, and worldwide wars, and simple illnesses like the flu. I looked it up – life expectancy 100 years ago was 49. That means a hundred years ago, I’d have been considered middle-aged by now.

But we’ve got medicine for everything now. Even cancer can be beaten. Infant mortality has been nearly forgotten about in the West. We understand nearly all the little bugs and critters that want to kill us, and we know how to avoid them, or what to do when we can’t.

Medical science is an entire industry funded by the human instinct for self-preservation. And just look at how much money we’re willing to spend!

It’s so much easier to stay alive these days, that one might forget entirely about death altogether. The ticking second hand of a clock means less today than it used to. Why drive out and watch the sunset? There’ll just be another one tomorrow.

No! Don’t have too much hope! Don’t drown yourself in hope and forget about how desperate your situation really is! You’re not going to make it! Do something now!

And that’s really how I feel about this journal of my disease. I hope I don’t inspire you too much. I hope I don’t bring anybody the false illusion that we are anything other than a fragile organism. I don’t want anybody to read this and then put off something they’ve been meaning to do. Like living. Or loving. Or dying.

Happy birthday to me. I’m 25. I’m probably going to live for quite a while longer. I can’t wait to do something with this extra time that I’ve been gifted. I have love for all of you, for sharing this time with me. That’s a start.

Well I can’t explain it. It doesn’t make any sense to me either. I guess I do remember talking to one survivor that said that after treatment she felt suddenly thrown out on her butt. I don’t really feel like that. And I don’t miss the drugs, that’s for certain. Or sitting around doing nothing. Or the fear that I might die. Or the smell of it all.

And this is going to sound incredibly stupid, but I can’t help but find myself looking back on chemotherapy with a sort of shuttering fondness. It wasn’t fun, but it was purposeful. And I got to watch a lot of CSI.

Ok, maybe it’s just the CSI episodes that I look back on fondly.

Whoa, the steroids. I forgot about them. No, they were awful.

I had a check-up this morning with my Doc and my oncology nurse. It was much of a check up, really. It was more of a…

“How are you?”

“Good. How are you?”

Good.”

“Good, nice seeing you.”

“Yep, see you later.”

As if my doctor and I were passing in a hallway. Which is stellar, because if I spent a long time talking to the guy, it’d probably mean something was wrong.

And I saw my nurse, and the other nurses. She “flushed” my port again, and this time I didn’t mind the smell or the taste so much. I didn’t really even notice the taste, come to think of it. She said she saw me in the paper yesterday, in the article about the Connie-a-thon that’s going on at Larkin High on Saturday.

They’ve hired me to play piano at a cancer survivor event in June, so we talked a little about that.

I think I’ve transitioned fairly completely back to a regular life. I’m finding work and sleeping well. I’m planning that trip to Florida at the end of the month, and a trip to Indianapolis next weekend.

But I’m missing the feeling of purposefulness that I had during chemo. Everything else sucked, but in retrospect, it felt good to be fighting for something, and to have clear, concise, achievable goals. “I want to work” is about the best goal I can come up with lately. That’ll need to change.

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I haven’t put a song up here in awhile, so I thought I would again. I was looking through my record collection for a good song to sing at the Connie-a-thon on Saturday. This one seemed fitting – try it on.

“Boy, this place is dead.”

Which is not the right thing to say in a room where they conduct chemotherapy, which is why it was followed by such an uncomfortable silence. I jumped on the silence as quickly as I could, adding -

“The place is empty. Everyone go home already?”

The nurses, probably thankful for my quick attempt to recover from the first comment, hastened to speed the conversation along. This was most people’s off week for their chemo, so, yes, there weren’t too many people in today. (I notice they never call us “patients”, except when they are talking on the phone.) They planned to get slammed next week. I thought that made it sound like a popular restaurant. Which it is not. Popular, that is.

I was in for another port flush. Which I must have subconsciously put off for as long as possible. They tell me to come in every 4 weeks, but they aren’t too picky about it. So when I’d gone almost 7 weeks without one, they hadn’t really noticed.

They did the normal ritual of flushing the port, etc., etc.

My nurse was sunburned, which we all thought was ironic – an oncology nurse looking like Miss Melanoma. But she’s not the one with cancer, we are, so let her smoke, and drink, and breath asbestos, and accidentally fall asleep in the sun if she wants to. Although, after all she’s seen, I don’t think she’d want to.

I saw on my calendar the other day that I’m quickly coming up on the 1 year anniversary of my diagnosis. July 26th. Or 27th. I guess the official phone call came on the 27th, but my heart sank with the first call on the 26th, when the words “lymphoma” and “oncologist” were first used.

I’m sure this’ll sound trite, but, boy, it seems like longer ago that just a year. 12 months. 6 spent in chemo and 6 spent recovering. Or spent forgetting. Or spent doing both.

They’ve been a few times that I’ve mentally stepped back, usually when I’m doing something that really makes me happy, and thought, “I would be dead right now.” And I would be. It’s an interesting thought. It doesn’t last very long, because the thought is a little overly-dramatic. There’s any number of ways or reasons why any one of us could have died by now. So why dwell on it.

Because I know it. Sure, we could die any minute, but we don’t know it. It’s all a big mystery. But not for cancer survivors, we know we got a second chance.

And you see, this is exactly why I’ve rarely been writing here lately. There’s so little left to write now that every entry inevitably ends up being some half-concocted, overly-dramatic general philosophy on mortality. How boring. Wasn’t it so much interested when I had things to talk about? Drugs, and side-effects, and characters, and the journey?

Well, forget cancer for a minute. Let me tell you what I do these days, a year later.

I’ve taken to biking. Like most other hobbies I have at one point become interested in (piano, guitar, camping, backpacking, speaking German, starting a record label, making websites), I’ve allowed it to take over my life. This is how I do things. I get interested in something, make a decision that I going to try it, and I don’t think about anything else for months. It’s a shame I’ve never taken up the hobby of “making money” or “feeding the hungry”, as I’m sure I could make a difference in the world if I could just get as interested in the world’s hungry as I once was about playing Sonic the Hedgehog (it, just that one game, consumed an entire summer when I was 14. And I consider video games to be a horrendous waste of time, and did then. Incidentally, I never got past level 4. The whole summer. Anyway…).

So, biking. I started with the problem that I didn’t have a bike, or much of a bike. My good friend Zach had given me his old bike, which he was going to otherwise donate to his garbage can, and that’s been with me for awhile. It’s sort of (we’re not in the chemo room, are we?) dead, though, if you’ll excuse the phraseology.

Another friend heard I was looking for a bike, and gave me an old 10-speed he had in his garage. A green one. From maybe 1987. Beautiful thing, though it inexplicably pulls to the left no matter how hard to furrow your brows at it. My brother gave me his old bike, also dead, but also rusted out from siting in the elements (and, judging from the dust, a great deal of concrete drilling) for the past 3 years. My brother claims that it is a green bike, although I can’t confirm that until I dip it in a vat of acid to get all the shit off of it. (Again, you’ll need to excuse my phraseology.

But if you think I might be defeated by the three dead bikes in the shed, or the fact that I don’t know how to use a wrench, or where to get one, etc., etc., etc., you would be wrong. You have either forgotten that part about “consuming my life” I mentioned earlier, or you falsely concluded that I was exaggerating.

I rode 87 miles this last week. In 4 separate rides. 8 miles + 16 miles + 39 miles + 24 miles. I don’t mess around when I get something in my head. I’ve lost 9 lbs. I decided that I would learn how to use a wrench, take the wheels off one bike and put then on the other. Which required the I also take the brakes off one and put them on the other…and the axle off one and on the other…

And, I almost forgot, awhile back I took my parent’s two dead bikes, stripped them of anything useful, and put it onto my bike.

The result is the ugliest, heaviest, oddest, Frankenstein-like bike you’ll ever see. And that’s what I ride.

It’s just unfortunate that I keep finding hobbies that require some sort of upfront cost. To backpack you gotta get a…duh…backpack. Not to mention you have to go somewhere WITH the backpack once you get it. Camping’s no better. You couldn’t imagine all the expensive things that are absolutely REQUIRED in order to rough it.

And now biking. A new road bike is a minimum investment of $600, if you want to do it right. Sure, you could go to Target and get a $70 Schwinn, but that would be more indicative of a “reasonable interest” in biking, not an “insane obsession”, which is what I’m referring to here.

I guess I’ve always liked biking. I used to go biking with my buddies when I was younger. But then there was that unfortunate accident that left half my face on the pavement. And then the unforgettable week or two in college when one pedal fell off and I become “Johnny One Pedal” until I saved enough money to fix it (seriously, have you ever ridden a bike with one pedal? It’s like trying to doggy paddle fast enough to water ski. Try going up a hill!)

So, while I am determined to bike, I’m also, apparently, determined to make it hard as possible by building a tank with which to do it. Because I put the gears and tires of one bike on another, I now have too few gears on the back end of my Frankenstein Bike. Long story short, I need to pay very close attention to how far down I shift. If I go too far, the derailler will de-rail the chain right off the gears, get stuck in the back tire, which will stop immediately, along with the rest of the bike – and maybe I’ll be able to donate the other half of my face to the pavement. It requires a lot of concentration to ride the thing.