Thursday, November 7, 2013

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.

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