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.

Mediports and Football: Thursday's Procedures, Part II

The other procedure today was the installation of my mediport. This is a device that’s meant to ease the delivery of chemotherapy, which I’m probably going to start on the week of the 11^th. When my doctor mentioned a port, I pictured something like this:  

Ten years ago I did not have a port; back then, they were bulky and external and prone to fun things like infection, leakage, and clogging. Also, it had to stay dry. So I took the second option—an IV stick for every chemo session, which amounted to needles upon needles until I developed a needlephobia that persists to this day. When my oncologist told me that port technology had advanced in the last ten years, and I should really consider getting one, I was skeptical. But then I found out that now, ports look like this:

And once it’s installed, it looks something like this:

The picture above is not my chest or port. Mine is still under wraps until next week, but I’m hoping that it will look something like the above picture when it’s revealed. Right now, it looks like this:

When they installed my port, they lifted me off the table in the biopsy room, wheeled me down the hall, lifted me onto another table in another room, wrapped me up like a mummy with an inflatable, heated pad (very comfortable), and put a tent over my head. Then a nurse named Linda shaved the area and cleaned it with some prep fluid that she told me was orange. “For Halloween,” she said. Once the procedure started, the doctor gave me a series of sharp injections to numb me up so that I wouldn’t feel the incisions. What I would feel—but not be hurt by—was the tugging and rubbing that he had to do in order to work the port in under my skin and get it into place. Hearing this, I was thankful for the tent they set up that shielded my vision.

Once the tugging and rubbing started, the anxiety that had been building over the course of the morning felt ready to let loose, when apropos of nothing the doctor asked me, "Do you like football?”

“Uh, yeah.”

“Chargers?”

“Bears, actually.”

Several of the attending nurses let out a low, ominous “Oooooooo…”

“What?”

“Your doctor is a Lions fan,” a voice in the room said.

At which point I told him that I was, too, after last week’s game against the Cowboys, when Matthew Stafford—who happens to be the starting quarterback on my fantasy football team—pretty much assured me victory with his ballsy call to fake a spike and run the ball in for a touchdown as time expired.

This led to a longer conversation about fantasy football—my number one non-work related, non-family related obsession—and before I knew it, the procedure was over and I was on my way to the recovery room.

And what was I thinking about there? The folder of instructions for what to do today after having two invasive procedures? The biopsy results, due back next week? My impending chemotherapy?

No. I couldn’t wait to get home to obsess about my fantasy lineup for this week.

Never underestimate the value of a good distraction.

Put Your Hand in the Hand: Thursday's Procedures, Part I

One of my favorite short stories is Raymond Carver’s “Cathedral,” and no matter what class I’m teaching, I’ll almost always find an excuse to use it. The story is told from the perspective of an unnamed narrator who’s anxious because a blind man—a friend of his wife’s from before he knew her—is coming to visit them. Our narrator isn’t a bad guy, but he doesn’t get out much, either, and he’s uncomfortable (to say the least) with anything that exists outside of his own narrowly-defined boundaries. Anyway, this changes over the course of the story in the unlikeliest of ways. After the narrator’s wife has gone to bed, our narrator and the blind man, Robert, are smoking pot in front of a television documentary on cathedrals. The narrator, in the first of a series of small but significant moves outside of his comfort zone, asks Robert if he knows what a cathedral is. He doesn’t, so the two of them decide to draw one together. Or rather, the narrator will draw it while Robert goes along for the ride. Whenever I talk about the story, I always spend a lot of time on two lines that Carver writes to capture this moment:

“He found my hand, the hand with the pen. He closed his hand over my hand.”

I love these lines and how their repetition of the word “hand” shows how much this moment of connection means to the narrator.

I thought of this story and scene today. I was back in the hospital for two procedures—having a mediport installed (which I'll cover in another post) and getting a biopsy done of the growths in my abdominal cavity. We did the biopsy first. This involved me climbing onto a narrow table, lying face down (while protecting my still-tender incision from Monday’s surgery), and remaining as still as possible while they ran CT scans, inserted biopsy needles in my back (thankfully, I couldn’t see this), ran more CT scans to check their position, repositioned the needles, and took samples. I was sedated for this, but I could still feel movement back there. It wasn’t painful, exactly, but it was uncomfortably noticeable, and I started to visualize a long, sharp needle poking organs and arteries and other tender pieces of my insides.

I must have winced or had some kind of a distressed look on my face, because one of the nurses, a woman named Julie, came over and bent down by where my head and arms were sticking out of the CT machine, and as the doctor fooled with the needles in my back, she took both of my hands into hers. She didn’t say anything; she just held my hands through the rest of the procedure.

For these last few days, I’ve been moved at whiplash-inducing speed through doctors’ visits and tests and hospitals, so when someone reaches out—in Julie’s case, literally—to slow me down, I’m grateful beyond words.

Post Op Blues

So, I'm a little over twenty-four hours removed from my surgery, and here's where I stand:

I'm not supposed to lift more than ten to fifteen pounds for the next four weeks. I'm not sure how this is going to go; I mean, I've filled plates of food that weigh more than ten to fifteen pounds--just ask anyone who's seen me at a cookout. Of course, my appetite's due to take a nosedive in the upcoming weeks, so maybe it's just as well...

I completely lack the flexibility (without screaming, that is) to put on my socks.

I found out last night that I have a total of three positions for sleeping: Hurts, Also Hurts, and Yep, Still Hurts. Now you may rightly ask, "Didn't they give you any pain medication?" to which I would reply, "Yes. But here's the thing..."

At this point we're about to venture, possibly, into TMI territory, so if you're of delicate temperament, you might want to stop reading here. I suppose I could stop, too, but when you've got cancer, you're pretty much allowed to say whatever the hell is on your mind. People are forgiving that way.

So, the pain pills. They have a pesky side effect. They can constipate.

And in my current state, that would be...well, it would not be a good thing.

Basically I'm dreading going to the bathroom if I have to exert any kind of force. I've tried a couple of times already, and when gravity hasn't kicked in, I've lacked the fortitude to help it out a little. It basically hurts like hell, even with a pillow pressed against the incision on my lower pelvis.

But really, to even get to that point of chickening out is pretty draining. That is, I first need to execute the once-simple act of sitting down on the toilet. To do this, I have to grip the sink with my left hand, grip the handle on the shower door with my right, and s-l-o-w-l-y lower myself until I'm about six inches off the toilet. Then I move first one hand and then the other to the toilet seat and complete the lowering process. Oh yeah, the whole time I'm wincing and sweating. It's only been a day, but I've already forgotten what it's like to get on a toilet without thinking about it.

So please, if you're reading this, the next time you sit down on the can with relative ease, whisper a little thank you. Because it might not always be so easy.