I couldn’t concentrate on getting work done and I can’t really explain why. So instead I wrote a 2,200 word account of being diagnosed with cancer nearly a decade ago.
And I’m aware that I left out the actual scene where I was diagnosed, and that’s probably important. But right now I need to stop writing this.
And, in case anyone other than me actually reads this and doesn’t already know: this is a long time ago. I’m fine and I’ve been fine for a long time. Sometimes … it just needs words.
This is not the story of my cancer. That’s a pretty boring story, at the end of the day: go to the hospital, wait, take pills, wait, go home, wait, freak out, wait, hospital … rinse, repeat. Feel like shit a lot. And in the end I was left with a few new scars, a head of baby hair and a disabled parking placard that wouldn’t expire for another three moths.
This is the story of diagnosis. And it’s not because it’s a story that needs to be told, but because it’s a story that I’ve wrapped around and around and around again and again in my head and even though it still sounds like words …
There was a phone call. I was upstairs, the open floor plan of my father’s cluttered office, reaching for the receiver among mismatched stacks of papers and DV tape labeled in my father’s illegible scrawl. It was a wired phone, which seems like a pertinent detail in the age of cell phones where I haven’t used a landline in as long as I can remember, but it’s probably not all that important. It was a black phone. Plastic. There was a red light that blinked when there was a call and a green light that blinked all the time and I never really knew why. There were speed-dial names written in that were probably wrong. I could hear the phone ring in other parts of the house, but I picked up the receiver.
“Hello, this is Somebody Who’s Name I Don’t Remember Nine Years Later, from Dr. Don’t Remember That One Either’s office. We’re calling to confirm Skyler Reid’s appointment today.”
"Yep. We’ll be there.”
“Oh, is this Skyler?”
“Yeah, it’s me. We’ll be there at Whatever The Time Was o’clock.”
“Okay, great. Oh, and be sure to bring one of your parents with you.”
And that’s when I knew. That moment. That silly receptionist who probably didn’t even know. She had just told me I had cancer. And I’d say this is the brilliance of hindsight, but I distinctly remember my response:
“Oh shit, I have cancer, don’t I?” And I said it trying to sound upbeat and aware but I’m sure my teenage voice cracked and I sounded panicked because, even though I didn’t know it yet, that was my first pure experience with that feeling, a feeling that I would eventually become far more familiar with, seeing it in myself and in my parents, seeing it ever so slightly peak through in doctors and feeling it bubble up in my gut and into my throat only to be tamped down with a few more pills and a syringe full of Benadryl.
“Oh no, no. I wouldn’t know anything about diagnoses. It’s just because you’re a minor.”
I’ve gone to the doctor without a parent. I’m 16. I know when grownups lie.
And then …
But let me go back again for a moment. Because there was a bump. It was just a little bump on my left shoulder, one that I couldn’t even see and could barely feel and didn’t even think to mention. And I didn’t think to say anything until it felt a little bit bigger, and then it was ever-so-slightly visible if you looked really close, just as a slight elevation on my skin-and-bones teenage shoulders. Far less visible then port wine-colored birthmark above it, easily mistaken for a headless bug bite or a colorless bruise if I were ever athletic enough to have gotten random bruises.
Funny, I got a lot of bruises after chemo. But that’s another thing.
And it was nothing and my parents were out of town and I was staying with family friends, so why say anything? The world was strange and dark, sleeping in the shadowy guestroom of older people that I only half knew. Old books on the walls that belonged to a “grown-up” child (no older than I am now), too-thick sheets that I wasn’t used to, a bedside lamp letting out noticeably yellow light. I was a teenager and the world was weird and I wasn’t home, so why would I notice a bump?
Until I noticed it. And that was after I was back home, with my parents and I think I was upstairs again, near my father’s office at the top of the building-defining spiral staircase. My mother’s office through the doorway at the other end, my parents bedroom up a step or two on the Escher-esque floor plan of our country home. Outside it looked like a giant medicine cabinet, painted in a duldrums grey that fit all-too-well with the ever-present fog of northern California. With a not-quite-seafoam green trim. Really, horrible colors chosen by the slightly psychotic contractor-who-might-have-been-a-spy that built the house for himself after his wife died. Inside was wide open spaces and inconsistent levels, requiring a person to climb one or two steps to get from the fireplace to the entryway, or down two steps into the kitchen, and out through a breezeway that had a hidden concrete storage space just the right size for a body underneath the floorboards.
There were a few other hiding spots and secret closets (yes, literally). It got cold in the winter. It was a weird house.
And it was there that my mother looked at my back and felt around the birthmark and said she didn’t feel anything, and then I pointed out that it was a little lower, closer to the bottom of the shoulder bone and over to the left, and then she kind of felt it.
I still wonder, and I still haven’t asked, if she worried. She’s a mother: she must have had a panic moment. But she never showed it and I don’t think she thought it was anything. No one thought it was anything. Even when I was laid out on the table in the backroom of my doctor’s office (“I’m a surgeon, no need to go into the hospital. It’ll just be a little excision,” he said at the end of our first consult), the doctor still figured it was probably just a cyst. Of course it had grown: I was a confused kid who poked at the damn thing, and cysts tend to grow when you poke at them.
The closest thing to worry I heard was from Tom. And he just responded to my being a jackass: “If you really have cancer, I’m going to punch you.”
Of course I was going about my life. I was scheduled to have an inexplicable-but-probably-nothing bump cut off of the muscle on my back. I was 16 and invincible. We were working on a school play and, during a break, I cracked the joke about the bump that I had maybe mentioned but probably hadn’t or if I had it was only in passing. Just to fuck with the other folks who were around. Tell them its cancer, see if they’ll believe you. Because, clearly, that’s impossible. No symptoms, no health issues previously, no environmental reasons, no sense to a teenager having cancer. I’m invincible. That won’t happen.
Yes, of course joking about it is a way to hide my own fear. I’m not stupid and I knew that was a little bit of what I was doing. But really, it was just a way to show I was brave and tough and that I could joke about something like that. Joking about scary, serious, real life shit when you’re a teenager? That’s the sign that you really get it. And Tom, being the friend that he is, expresses serious concern the only way he can. Threw the threat of violence.
He still hasn’t punched me. At least, he hasn’t punched me for having cancer. Not that I remember.
And I remember the feeling of the surgeon cutting into my back, me facedown on a table in a cute, little country town general practitioner’s office. Wood walls, striped, padded chairs for visitors. This was probably a bedroom at one point, down the hall from the living room-cum-waiting room. The bathroom is another door. The one or two other patient rooms, also former living quarters. And now they’re rooms in a general practitioner’s office and now I’m have my back cut open in one of them, local anesthetic. I can feel the blood spill down my side and the tug around the area of the incision, and occasionally there’s a sharp poke when the knife goes a little further then the anesthetic and then I’m numbed back up.
I couldn’t tell you exactly what my doctor looked like any more, but I remember he was tall and lanky. Affable. Smiling and intelligent and just a bit older than my parents, although he may not have actually been older than them. But for a kid, the doctor had to be older than my parents, because he was cutting into my back and he better know what the fuck he’s doing. White and a beard, but I don’t think those are real memories. I think I’m making that part up.
What I do remember is the sound of his voice when he finished cutting out the bump. Calm. Straightforward. Completely objective. Nonplussed, but in the informal “not surprised” definition, not the real one which is essentially the opposite.
"Yep, that’s a tumor.” And I can picture him holding up a little tube with a bloody lump of flesh sitting in it, but again: I don’t think that really happened. It was a lump in a container, and he handed it off to his aide, and I think I even saw it, but that’s blocked. That’s not in my mind anymore. And he still had to sew me up and blood is really warm when it comes out of your back. They didn’t want me to look at the table afterwards. It wasn’t that there was an abnormal amount of blood, but it can be a little jarring to see your own blood spilled out on a hospital table.
Over the next few months I got used to jarring. You get used to a lot of things when you have to shit into a plastic bowl (a “cowboy hat” as my dad decided to call it) and then tell people about the poop. And when you start seeing your pubic hair on the rim of the container you have to piss into. And when you’re riding back from your second round of chemo and you notice more and more of your hair is falling out and then you reach up and just pull out a handful and you’re too drugged up to realize that you should spring that slowly on your parents, because they’re actually people and you’re not just a 16 year old anymore.
That was one of those “panic” moments for them, I think.
And a week later – a week after the surgery, that is – that’s when the call came. The one I answered and then knew I had cancer. Because it was “probably benign” until the phone call. And then … it wasn’t.
Cancer, I’ve been told, isn’t fun. I wouldn’t know. We caught my tumor early, just not early enough. It had disintegrated somewhat, gotten mushy, something. And my doctor had gotten as much as he could, and he probably got everything, but I was a young man and the labs had come back and it was malignant. And so I was going to do chemo.
Chemo isn’t fun. That I can tell you. You’re body is quite literally being killed and you get sweats and fever dreams and itches and pains. Everything is exhausting. Moods go crazy. You can’t see people and you name your IV pole, because why the fuck not. And you get along with your doctors and learn a lot about your parents. Because all of a sudden they’re people and they’re just as scared as I am. More, probably. All I had to do was not die. They had to worry.
It’s more than nine years later, more than nine years after I completed treatment. It’s not a special month and I’m not in a special place. I’m in a chic coffee shop in Brooklyn and the music can only be described as “world” music and it’s about 30 degrees outside. I can’t focus on work and for some reason … this is where my mind went.
This happens sometimes, when my mind wanders. I think about the cancer, about the moments. The treatment was a blur, and we used to point out that the doctor probably did get all of it during surgery. The four months of chemo – CHOP therapy, not that I remember what the acronym stands for – those were a precaution. And that’s good, but … well, the cancer didn’t last long. A few weeks, and then that bump that was growing was gone.
The scar is barely visible. You can’t really see it, and most people get distracted by my birthmark. But I still feel it. I still know its there.
And sometimes I wonder … what if it was now? Or what if it happened again?
I really don’t want to think about that.