Hair Today...

Well, the time has come. For the last few days, I’ve stepped out of the shower to find my neck matted with hair. Yesterday, all that hair loss became--at least to me--noticeable; I looked like I’d had a haircut. This morning, I could gently pinch the hair on my head and come away with this:

So, here’s where I started:

I don’t know how many people have shaved their heads before, but it has to be done in stages. Stage one is with the electric clippers, starting at the third-lowest setting and working down to the lowest. And perhaps it goes without saying that this stage demands a Mohawk:

I post this picture in part as a shout-out to one of my students this semetser (you know who you are, and thanks again for the book!)

Next, I lose the Mohawk:

Up to this point, I’ve been using only my electric clippers. Now it’s time to get serious, so out comes the shaving cream:

The result? A head as smooth as a baby’s bottom:

So is this how I’ll venture out into the world? Probably not; I think I’ll make my initial appearances with a little more flair:

For now, I'm going to leave my facial hair. It's falling out, too, but I'm content to let it come out on its own. As for the new look, I don't think that “Heisenberg” will work as an alter ego—I don’t know enough about science. Maybe…Hemingway?

I’m open to suggestions.

Mailbag!

I’m a little more than a week removed from my first chemo treatments, and I’m happy to report that my appetite is strong and my energy is up. I was afraid that I’d be too cashed to teach, but last week went really well—so great to see all my colleagues and students again—and I’m looking forward to one more week of rest before I head back for my infusions on the 2nd.

So what does all of this mean? Another post, of course.

Readers of my last blog (the fun one, the one I kept when I biked across America), might remember how I received a fair amount of reader mail while on the road and how I took the time in a couple of posts (here and here) to answer this mail.

Incredibly, it’s been happening again—letters from all over. Since they’ve been piling up and Shannon’s been complaining that they’re taking up too much space, I figure it’s time to answer a few. So let’s get right to it.

Joe from Pratt, Kansas, writes,

          Are you related to the designer?

Lots of people ask me that, and my short answer is, “Not that I know of.” However, my grandfather believed that we were distant cousins. It turns out that the original spelling of our last name is with an “e” (Versace), and his—my grandfather’s—family came from Reggio Calabria, which is the same part of Italy that Gianni Versace is from. So who knows?

Alex from Oceanside, California, writes,

          Dude, how can you write about this stuff? It seems
          crazy personal.

Alex, I wonder about that myself. I’m from the Midwest, and I come from people who value privacy, so it really doesn’t make a lot of sense. However, I’m also a product of what I’ve been doing for the vast majority of my life—studying, reading, and teaching literature—and from this I’ve learned that there’s a healing power in writing. This blog has helped me work through experiences that would be tough to deal with if I just kept them locked up in my head.

Marie from Ames, Iowa, writes,

          Did you lose your hair?

As of this writing, I still have a full head of hair. However, I noticed this morning that I can pull out tufts of it pretty easily. It’s just a matter of time before I start developing little bald patches and look like a post-Apocalypse refugee. When that happens, I’ll shave it off (and, of course, post pictures).

Ken “Buster” Carter from Stillwater, Oklahoma, writes,

          Been reading your blog and it made me think of back
          when I was in high school. We had a science teacher
          there named Mr. Benson. He must have had what you have
          because word got around that he was “missing”
          something. People started calling him “One Ball
          Benson.” If I’m being totally honest here, I guess I
          kind of started it. A few of us broke into the gym one
          weekend and we started leaving things around for Mr.
          Benson. A golf ball on his desk. A basketball on the
          hood of his car. One guy slipped a baseball into his
          lunch bag. He ended up leaving a month before the end
          of the school year. Someone said he got a job at
          another school. Anyway, do you think I’m going to hell?

Buster, I don’t believe in hell. But if I did, there’s probably a special seat with your name on it there.

Louise from Bolingbrook, Illinois, writes,

          My father (never smoked a day in his life) died of lung
          cancer when he was still a young man in his 60s. My
          sister has survived breast cancer twice. My mother-in-
          law wasn’t so lucky. Breast cancer took her in her 50s.
          A friend of mine sent me the link to your post on your
          surgery. She liked it, but I just can’t see what’s so
          funny about cancer.

Louise, let me first tell you how sorry I am that your family has been hit unusually hard by this disease. Believe me when I say that I don’t think there’s anything funny about cancer. But we all have different ways of dealing with the challenges that we face. I guess I like to look for the funny when I can; I don’t see much profit in dwelling on how awful things might seem or how awful things might get. Of course, it’s a big help that my prognosis is good. I might tell the story a little differently if I was looking at a dimmer future. I hope I wouldn’t, but I might.

George from Lansing, Michigan, writes,

          What’s it feel like to have one ball?

Not that different, actually. A little roomier.

Sara T. from Tucumcari, New Mexico, writes,

          Are you still biking?

No, and it’s killing me. I hate driving to work, I hate being stuck in traffic, I hate walking past my bikes while I avert my eyes. I imagine them wondering why I’ve been ignoring them.

Mike from Huntsville, Alabama, writes,

          You told Buster that you don’t believe in Hell (I
          always learned it should be capitalized). Why not?

What’s the point? Does imagining that there’s some horrible place waiting for bad people make life better? More comforting? I think people spend too much time imagining what’s waiting for us after we’re gone and they lose sight of what’s going on right here, right now. If you want to believe in heaven and hell (sorry, not going to capitalize, Mike) and it makes you a better person to those around you, then go for it. I’m not wired that way, though. When I think of hell, I always think of a description that one of the priests gave to my Sunday school class when I was in fifth or sixth grade. He told us to imagine a giant pile of sand as tall as the Sears Tower (a good point of reference for us since we were in Chicago). Then he told us to imagine that every thousand years, a bird would fly to the top of this pile, pick up one grain of sand, and fly away. When the entire pile is gone, he said, you will have spent a single day in hell. It scared me at the time, but it wasn’t until later that I realized fear was the whole point. And I say to hell with that.

Arnold from Grand Junction, Colorado, writes,

          I’m a college student, and I got a call from my

          parents about our neighbor, Tim. He has some kind of

          cancer. He was a really cool guy. When I was a kid, he

          used to take me fishing with him all the time, and

          when I was applying to colleges, he helped me with my

          essays (he’s a teacher). My parents said that I should

          give him a call, but I don’t know what to say. I’m

          getting ready to head back home for the holidays, and

          I feel really weird about seeing him, and I’m afraid

          I’m going to say something stupid. Do you have any

          advice?

Arnold, I certainly can’t speak for everyone with cancer, but I don’t mind talking about it. In fact, talking about it openly makes me feel a little better. I’ve had people that I don’t really know that well reach out to me, and those acts—little and big—have moved me beyond words. What’s bad is when I get the feeling that my illness makes someone uncomfortable, particularly if that person is someone I feel close to. It sounds like you have a really good relationship with Tim—who, by the way, still IS “a really cool guy”—and I can guarantee that he’ll appreciate anything you have to offer him. By the way, where our friends are concerned, “not knowing what to say” does not relieve us of the obligation to try.

John from Portland, Oregon, writes,

          Are these letters even real? Am I real?

You would know, John.

Okay, so that wraps up this edition of “Rocco’s Mailbag.” If I didn’t get to your letter, I sincerely apologize, but please know that I read every single one of them and will eventually provide every sender with a personal reply and a signed photo of my completely hairless body.

Scenes from Week One

Well, I made it through my first week of chemo and now have two weeks off to recover before I go back. As the days have passed, I’ve been feeling more and more disjointed, so I thought that instead of imposing a false sense of order on everything, I’d try to mirror how scattered I’ve been feeling.

Some basis facts:

I receive my treatments in a large room that sits at the back of my oncologist’s office. From above, the room would look like a wide smile. The teeth, in this case, are cushiony recliners where patients sit as they’re infused.

There are many props in that room, but for some reason I fixate on one in particular.

    

     

Each day I’m greeted by the nurses and medical techs there—Sue, Heidi, Maria, and Beth—and invited to pick a seat.

“The 70s on 7”—this week’s preferred XM radio station. One of the nurses—Heidi—has so far known all the words to every song that’s come on. Really good voice, too.

“The Night Chicago Died” on Monday morning. When I was a little kid, my cousin and brother once used this song to make me cry; I can’t remember how, exactly, but apparently it didn’t take much.

Englebert Humperdinck’s “After the Lovin’” on Wednesday morning XM. My mom was a huge Humperdinck fan; I remember summers as a kid when she’d play album after album of this guy. According to my brother, my dad hated this song in particular because he misheard the title as “After the Love-In,” and thought it was about an orgy.

Sue, who’s been handling my chemo all this week, is a cancer survivor herself. Like me, she's Italian but doesn't speak the language.

The port is working out well. I didn’t get one last time, and getting stuck with IV needles over and over again in my hands and wrist really took a toll, physically and emotionally. I wasn’t sure what to expect with the port, and just before Sue hooked me up for the first time on Monday, she asked, “Do you want some numbing spray?”

     I had no idea that this was even an option.

     “Um, YES.”

     “Some people don’t like the spray,” Sue said. “It’s a little cold.”

     A little cold? In my mind, the choice between “a little cold” and a needle is not much choice at all.

     And it wasn’t. The spray was kind of refreshing, and I didn’t feel the needle go in at all.

The nurses have a weekly football pool that I horned my way in on. When I turned in my picks and five bucks on Wednesday, I asked if I could get a handicap since I had cancer. Heidi’s immediate reply: “Nope.”

My infusions last about four hours. I try to keep myself busy. Writing, reading, sketching. I do this last one quickly because it has the potential to unnerve others. Also, it's a convenient excuse for my sloppy drawings. 

The side effects don’t waste much time.

Tuesday morning, and I’m wide awake at 2:15 a.m. I’m not anxious, or feeling ill; I’m just awake. I get up and write for about an hour. Then I go back to bed.

The next night, the same thing. This time I read. Maria Semple's Where’d You Go, Bernadette?

On Wednesday, a definite drop in appetite. This feeling is manifest in what I see and feel as a little ball of “queasy” lodged just under my sternum. When I imagine eating—or making one of the juices that I’d planned to make each day—the ball throbs a little and my jaw gets tight. Eating anything becomes just about the last thing I want to do.

I perk up a little on Thursday with the anti-nausea meds, but when the weekend rolls around, I’m just not hungry. Perversely, I can’t stop thinking about eating, which makes that little ball of queasy jump around.

I feel like I’m walking more slowly, more carefully. As if waiting for something to happen. I don’t like this.

This line, from a story by Tobias Wolff: “That room—once you enter it, you never really leave.”

That may be true, and it’s maybe also true that when you’re in that room, it’s easy to feel alone. But that’s not always the case.

On Friday, as Sue inserted the needle into my port, Beth rested her hand against the side of my face, and I thought of this.

Different friends from work have sat with me for a little while each day.

Students have sent me messages. Hope you’re feeling well and  I’m enjoying your blog and Is it okay if I turn the homework in a day late?

Calls, emails, texts from friends. Each morning of chemo, a text from an elementary school friend who—before this last summer—I haven’t spoken to since high school.

Cards in the mail when I get home.

A long, cardboard box. Inside, a giant stuffed T-Rex from my crazy cousin (the same one who helped my brother make me cry). She knows how much I love monsters.

Who else is in that room? The world of the unwell has many citizens:

Melinda (not her real name) is a mother of three who has ovarian cancer. She’s younger than I am and sits quietly through her infusions, which take up even more of the mornings than mine do.

Jack (not his real name) is an older guy and veteran who has multiple growths around his esophagus and in his liver. He told me that he’s been “fighting an uphill battle” since April.

Sam (you get the point about the names, right?) is another older guy who speaks barely above a whisper. Not sure what’s wrong with him, but he’s in for about an hour each morning and reads on his iPad.

In that room, age and wisdom don’t always correspond the way you'd think.

I overhead a young woman patient of about thirty (who has clearly been doing this for a while) comforting her seat-neighbor, a woman of about seventy (who was clearly just getting started).

When Sue was getting me hooked up one morning, I said that ten years ago I was the youngest person in the room. Not so much this time around. She told me there were quite a few young regulars, including a nineteen-year-old who, according to her, “probably won’t see twenty-five.”

Tomorrow I’m back to teaching. I’m a little nervous about my energy level, but I know that being back among my friends and students is infinitely better than sitting around at home and thinking about being sick, about being back in that room.

The iTunes Syndrome

So I decided to take a self-shot every day for the duration of my chemotherapy and recovery (by which I mean the time it takes for the most visible side effects—puffiness from the steroids, baldness from the drugs, etc.—to fade away). My plan is to then turn them into one of those high-speed animations that love to go viral.

Anyway, I took my first selfie on Monday, and I couldn’t figure out how to move it from my phone’s camera roll into the album I created. It’s probably easy to do, but I was getting a little pressed for time; I had to be at my first chemo session in half an hour. One solution that I turned up on Google was to move it by using iTunes.

I read this, sighed, reluctantly opened up iTunes on my laptop, and was not at all surprised by what I saw next.

“A new version of iTunes is available. Would you like to download it now?”

Well, shit. There went the next twenty minutes.

“Now, Rocco,” one might have said (if one had been in my house and creepily peering over my shoulder), “Just decline and do it later.” Yes, that would be the way to go, assuming that the person sitting at the computer is not obsessive-compulsive about these kinds of things. Which he (I) is (am).

This particular situation—what I’ve come to call the “iTunes Syndrome”—is something with which I’m well-acquainted. Sometimes I just want to hear a specific song that’s been in my head; sometimes I just want to sync something up on my phone; and sometimes I just want to check out one of my playlists. But instead of the quick trip to iTunes I envisioned, I’m suddenly involved in watching a progress bar fill at near-glacial pace.

The “syndrome” is essentially this: my day grinds to a halt because of the well-intentioned programmers at iTunes. And by “well-intentioned programmers,” what I mean is “soulless asshats.”

And to make matters worse, after each and every one of these installs, I have yet to see any discernable difference for the better in how iTunes runs.

So where am I going with all of this?

Naturally, to cancer.

Here’s a fun fact: we all have cancer cells in our bodies. If we’re lucky, our cancer cells are lazy stoners who lie on the couch all day with a big bowl of Cheetos on their laps. If we’re unlucky, our cancer cells are industrious iTunes programmers who work nonstop (until the chemo or radiation hits) to create disruptive changes that no one but them sees any value in.

I don’t know; maybe I’m overthinking all of this. I do have cancer on the brain. Which is better than cancer of the brain—and I hesitate to even write those words lest my little iTunes programmers get going on yet another project.

Round Two

When I went through chemotherapy ten years ago, I kept a journal. Today, on the day before I start “Round Two – Ten Years Later,” I thought I’d dig it up and see what was on my mind. Here’s what I found:

Sunday, July 13, 2003

It’s the night before my chemotherapy begins. What am I thinking about?

How badly will it kick my ass?

Will there be any long term effects?

How bad will Nick and Tony be frightened?

How bad will I be frightened?

Will it even work?

I can’t dwell on this last question too long. It has to work. It’s important that I stay positive about the whole thing. I know I’m tough and that I’ve got a lot to live for. I also know that I’ve had it pretty fucking easy for all these years, so maybe I’m due for a little suffering. That’s fine—that’s life, and I accept it. I don’t think that my kids are due for any suffering, though.

When I think about dying, I think about the people I’ll leave behind and how devastated they’ll be. But I’m too arrogant—or stupid?—to think that I’ll really die. I’ll probably feel so shitty that I’ll wish I was dead, but I do believe I’m going to come out of this OK.

Other than surviving, I hope that I come out changed in some way. I want to learn something from all this, other than a bunch of tired clichés like life is fragile, you never know what might come next, blah blah blah bullshit bullshit bullshit. I know all this already. Maybe what I’m hoping for is some perspective. Or something about fear.

The bottom line is that I’ve never really faced a struggle, and I’m anxious to see how I’ll do.

Turned out that my thoughts were pretty on target.

There was an incident during my second week of treatment—a severe allergic reaction to one of the drugs I was given—that sent me to the ER and left me feeling so shitty that I did, in fact, want to die (a story for another time, readers).

I came out changed, too, and it had everything in the world to do with perspective. My bout with cancer set in motion a lot of changes in my life and led me straight to the seat of my bicycle and a two-month journey across the country. Since I finished that three years ago, I’ve been working on my book (That Hidden Road) about the ride, about cancer, about a lot of things. Now comes the tricky part of convincing a publisher that people might find it interesting.

And I did learn something about fear. Or rather, I thought I learned it but didn’t know until just recently whether it was true. When I came out the other side ten years ago, I told myself and anyone who was interested that I never expected to be that frightened for myself again.

Sure, when my doctor told me the news a few weeks ago, my first feeling was that I was in an elevator whose cable had snapped. But the shock didn’t last too long, and what replaced it was calmness. I thought that I was in some kind of denial, but the calmness has stuck with me over these weeks, and it has a voice, too, that’s been telling me You’ve been here before (well, not the surgery, but still), you know what you’re in for, and you know what you didn’t know before—you can handle a struggle. There’s no new fear here.

When I saw my students last week, I told them that cancer is a shitty thing any way you look at it, but one thing I took from it was self-knowledge. Cancer taught me something about myself that I suspected but didn’t really know until it came along to show me: I’m a survivor.

Preparing for Battle

"If you know the enemy and know yourself, your victory will not stand in doubt."

                                                                                     --Sun-Tzu, The Art of War

Time to get to know my enemy (with a little help from this birthday gift).

Fire My Travel Agent

Elev. HCG, AFP

CT (chest, abdomen, pelvis) conf. retroperitoneal mass

Ultrasound conf. test. mass

Right I/O

Testicular biopsy – nonseminomous, terratoma

Retroperitoneal biopsy – nonseminomous, embryonal

EP x 4

Possible RPLND

Um, what?

This is probably the reaction that most people would have when looking at what’s written above. Yes, the letters are familiar, but they’re arranged into words that look like a foreign language. And of course, they are. In this case, it’s a language used in a city that lies in a country that you can’t find on any map. It’s a country that you wouldn’t want to find on any map because you’d never want to visit there.

The country is the United States of Cancer, and the city is Testicularville, a little coastal town—because, why the hell not a coastal town?—with a 100% male population.

I didn’t really book passage to Testicularville (not that anyone ever does; coastal or not, it’s a pretty bad spot). It was more like I got jumped after a night of drinking, thrown into somebody’s trunk, driven across the border, and set up in a really shitty motel near the railyard. So here I am.

To get my bearings, I joined a Testicular Cancer discussion board and immediately saw that every member’s signature includes an abbreviated version of their cancer history that more or less resembles mine above. I paused when I saw the first one, but my confusion lasted only a second. Then I completely understood what I was reading.

In one way, it reminded me of French. Back in high school, I took four years of the language and then never gave it another thought until seven years later, when I was in graduate school. As part of my program requirements there, I had to take a reading class in a foreign language. Not surprisingly, I enrolled in French, but very surprisingly, it all came back as I quickly remembered most of what I thought I’d forgotten.

The same thing happened on the TC boards. But this time, my recognition of the language wasn’t just academic. I felt a much deeper connection that was both comforting and unsettling.

It was comforting because I had an immediate sense of community. All of us reading and writing on that board share some important history even though we haven’t met each other except across the ether. But we speak each other’s language—not just of tests, diagnoses, and treatments, but also of fears, anxieties, and empathy.

But it’s unsettling, too, because it’s a community of the wounded, and if we had the choice, we wouldn’t want to be a part of it.

It’s far from the only one of these communities out there. I’m sure everyone reading this has some place—again, not found on any map—of which he or she is a reluctant citizen. But in the end, those citizenship papers are part of who we are, and you either try to forget you’re carrying them, or you try to do something with them.

Before I sign off, I’ll provide some translation of what’s up top. Specifically, of the “EP x 4.” This is my chemotherapy plan, or “protocol,” which my doctor outlined for me yesterday afternoon. “EP x 4” means that I’ll receive four cycles of two drugs: Etoposide and Platinum (medical name, Cisplatin). Ten years ago, I received three cycles of three drugs: Bleomycin, Etoposide, and Platinum. The Bleomycin, however, carries with it a high risk of permanent lung damage, so my doctor wouldn’t put me on it again. The good news is that EP x 4 has the same effectiveness as BEP x 3. (See how easily you understood these abbreviations?)

Now, you may ask, “What’s a ‘cycle’?” Each cycle for me is three weeks. For the first week, I’ll go in Monday through Friday morning and get an infusion of the E and the P, which should take a few hours. For the second and third weeks, there are no infusions; I rest and recover. That three-week period is one cycle. Week four begins the second cycle, and I go in again, Monday through Friday morning, for my infusions. Weeks five and six are, once again, “off” weeks. Cycle Two completed. And so on through two more cycles for a total of twelve weeks.

During this time, the nurses will draw blood and check the tumor marker levels in my blood, which will hopefully drop. I’m trying to be Zen about the whole thing and stay focused on where I am now.

So where am I? Right now, I’m enjoying my day. If I let myself get a little further ahead, I’ll think about how, later this morning, I’ll see my students, and how, after that, I’ll have a pleasant evening with family and friends.

What I don’t want to do is start to think about Monday morning, when I’ll be back on the streets of Testicularville and driving to my oncologist’s office, where I’ll go to the treatment room in back, sit down on one of the recliners, close my eyes when the nurse plugs the IV needle into my chest port, and immerse myself once again in a strange language that sounds harsh on the tongue but will help me get around.

Heroes and Monsters

When I had cancer the first time, there was no surgery involved, so my physical encumbrances were all chemo-related—fatigue, loss of appetite, some nausea, neuropathy, yada yada yada. Now, though, it’s different. Less than a week removed from surgery and a few days removed from two procedures that were more invasive than I remembered/realized, I’m finding the physical obstacles to be a lot greater. This morning I was able to take a shower for the first time since Thursday, but first I had to waterproof the bandages covering my port, which basically take up the top right quadrant of my chest. And I’ll have to keep doing this until those bandages come off next Thursday. This led to an interesting shower, during which I was required to perform an amazing array of acrobatics that were made even more challenging because, for some reason, I decided to drop the soap no less than four times.

When I’m not contorting myself in the shower, I sit and stand very carefully and developed the habit of announcing that I’m doing so with either a grimace, wince, or grunt. Sometimes it’s all three at once. As far as walking goes, my gait is somewhere between a lumber and shamble, and as I moving slowly down the hallway this morning, I thought of THIS SCENE. And it reminded me how I spent my down time during chemo back in 2003.

I made monsters.

Not real ones, of course; I made monsters from model kits, mainly from a long-defunct company called Aurora. When I was a kid, model-making was my number-one hobby. But with a ten-year-old’s hands, an impatient and crummy eye for detail, and those awful Testor’s enamels whose fumes probably mutated the cells that turned cancerous on me, the end products looked like crap. For some reason, though, I decided to resurrect this hobby during that summer of chemotherapy.

(Okay, no need to be cute here; there was very clearly a reason—or, more accurately, a blatantly transparent psychological impetus. Faced with my own mortality, I probably felt the need to reach back to my youth in order to recapture its illusion of innocence and safety. Sue me.)

Motivations aside, I spent a lot of time and money on eBay tracking down unbuilt kits from the past. Then, after digging up some modeling tips on the internet and finding out all about acrylic paints, I made some kick-ass models that summer.

Here’s one that captures how I usually feel:

And here’s one that pretty much sums up how I feel right now:

I made other monsters—the Creature from the Black Lagoon, Frankenstein’s monster—and I made some heroes, too—Batman, Robin, Superman. My favorite characters, however, have always been a little hero and monster. One of these is the Hulk, whom I’ve already written about HERE. Another is this guy:

I might return to this hobby in the upcoming weeks. I still have an unbuilt Dracula model in my closet. I really wish there was a Swamp Thing model out there, though. In fact, I’d give my right nu—

Whoops. Too late for that.