even if i am. (25 page)

chapter forty

theme song from the x-files

Most of my co-patient routine involved hospital reception areas. Blood Draw was the worst wait. Small and crammed, with a window and a woman peering through, staring, kinda like the nurse’s station in high school. I use to skip class faking sick and lie on the cot until the period was over. I figured that’s what you did after the nurse called your name and you’d disappear behind a door. Jealous you got to skip third-period Blood Draw.

I read one of the dozen brochures lined against the reception wall. Today’s glossy choice:
Loving Someone with Advanced Cancer
. A brochure condensed into a fifteen-minute skim-through. You appeared just as I turned the last page. You had a cotton ball taped to your arm and a piece of paper complete with numbers and markers and counts that only Superman could decode.

Sipping the last sludgy inch of the hospital coffee gave me the kick I needed as we headed to the Outpatient Clinic and the last stop of our day. This part of the building wasn’t much different from the rest. It still had the uniform gray-, green-, and tan-striped carpet, same rows of chairs covered in patterned cloth. The same plants and lamps and smell of Purell mixed with piss, bleach and sickness, creating the usual hospital odor that stuck to your clothes and in your hair. Yet, this side of the hospital was slightly different. It was open. There were couches that matched the chairs. Gossip magazines and trades, news, sports, even novels to read. Meals were eaten in these chairs. I snacked on vending machine treats. The lobby was large and triangle shaped. The tip was the hallway to Superman and his staff. One side of the triangle was a window overlooking construction of a new cancer research center. There was fresh coffee and tea in another corner, and a flat screen featuring daytime television in the other. We’d spend hours in this room waiting, or at least what felt like hours. We’d sit. And sit. And sit. I’d read first chapters or finish books. I’d stretch out on the couch, head in your lap and nap. We’d take turns napping. The lobby could easily seat fifty. In the lobby, women snuggled close to their spouses for comfort, children played on the floor as mother and father talked seriously. A girl about twenty seemed to have the same routine we did, sat in her wheelchair, nodding a hello for the third time that day. Whole stories played out on the faces of each patient, family member, and friend. I wanted to hear their stories, but I kept to myself. You did, too.

“Anthony Glass.”

Taline would call a name to the reception crowd. The room went silent as we all watched the patient stand, then walk to the tip of the triangle. Once beyond the doors, activity continued. We all knew what happened behind those doors. You’d get next week’s chemo schedule and the test results from your last scan.

She would greet you, discuss the week’s progress, new ailments, problems. She’d poke and prod, listen and light ears, nose, mouth. After a few minutes Superman would fly in, his hopefully optimistic, charismatic self with such energy and excitement that he had us loving him wholeheartedly. Much like an uncle, the kind who kept a clutter of dusty sports memorabilia on his shelves. Only Superman’s weren’t dusty or sporty; they were plastic organs.

With Superman and his staff we knew we had the best care possible. We couldn’t lose. “This new chemo has a foolish side effect. Acne. But it’s good!” he declared jovially, in his thick German accent. “Statistics show if you are getting pimples it’s working!”

…

Sunday, May 7

31 going on 13

do you remember your first pimple?

i do.

i had just started seventh grade,

my first year of junior high school,

and along with my newly acquired braces,

glasses, and lack of self-esteem

came my very first pimple.

like many symptoms of puberty,

it comes with a hidden sense of pride

in feeling like you’re growing up,

and now experiencing things you’ve

only heard about through others.

however, that sense of pride is usually

eclipsed within seconds by the greater concern of:

“okay… so what the fuck am i going to do

about this thing on my face?”

thirty-one years of age now.

older. wiser. stronger.

and over the last five months of chemo,

i’ve experienced some unpleasant side effects:

diarrhea, nausea, farts, fatigue, penile enlargement…

(yeah, okay. fine…)

but on monday, i started a new type of chemo (erbitux)

which brings a new, and somewhat nostalgic side effect

back into the fold: acne.

fun, right?

but not only that, the oncologists want me to break out.

if my body exhibits a strong reaction of acne,

then it means that i’m responding to the erbitux

and that the chemo is actually doing its job

of turning me back into a thirteen year old…

hooray.

so here we are,

almost a week into it,

and my forehead looks like it’s

slowly morphing into that of a klingon.

and i’m happy.

sort of.

except now, again, i have to wonder,

“what the fuck am i going to do

about this shit all over my face…”

Posted by Anthony Glass 7:38 a.m.

…

Waiting for the elevator to open, Taline passed hurrying to her next appointment. She smiled at us, then suddenly stopped and turned around. “Anthony?”

“Hi, Taline. How are you?”

“How long has your skin looked like this?” She didn’t have time for hello.

“A few days now. Exciting right? Who knew getting zits could be this exciting.” We both smiled.

“Where are you headed now?”

“We just got done with Blood Draw. Time for chemo.”

“I think you need to see the doctor first. He needs to examine your skin.”

We were both beaming, proud that the doctor would want to see the progress of your skin. You reached for my hand.

“Really? We’re not scheduled to see — ”

Her response interrupts, “Anthony, whenever your symptoms are this severe, you need to call us.” The entire sentence full of impatience and efficiency. She looked worried.

I stayed composed, though my heart stumbled.

…

Wednesday, May 17

under my skin

mmmkay…

hmmm.

yes, i see.

so, perhaps “acne” was a bit of an understatement.

my face, my neck, my ears, my chest, my back

have been blanketed with a lovely corvette red

rash-like coating and “countless” tiny fucking pimples.

no, junior high was never quite like this.

let’s… yes, let’s say its a little more like

an episode of the x-files. a bad episode.

after a week of trying every over-the-counter

cream/lotion/elixir/salve/bathtreatment/magicalspell

that we could come up with, chas and i found ourselves

back on the oncologist’s office on monday

ready to get another dose of erbitux.

taline, the nurse practitioner for my oncologist

passed me in the hallway, took one long look,

smiled, and said “you’re not getting chemo today.”

whisked into the crazy german’s office,

he and she both took turns marveling at the extent

of my freakish skin, especially the area on my back

where i had been treated with radiation,

and consequently had no rash or acne.

“fascinating!” he shouted through his thick accent.

this is interesting stuff.

seems they might write something up about it.

publish it.

funny how things turn out, right?

we’ve gone from junior high

to x-files

to science experiment.

the good news is i got a prescription

for some antibiotics and pimple cream.

it’s been two days, and i think i can notice improvement…

or maybe that’s just more side effects.

posted by Anthony Glass at 1:43 p.m.

…

“Why are you laughing?”

“To think, we were actually celebrating these zits.”

I didn’t want to tell you I had a memory of good things before us — that’s what made me laugh. About a time when I drank Kool-Aid mixed with whiskey and smoked weed rolled with pieces of brown paper bag. Even in it’s teen complications, and erratic hormones, I got zits, but life was good. It’s not that life wasn’t good now; that’s not what I’m saying. Life was just simpler then. When I got a pimple I applied cheap Clearasil in hopes that it would be gone before Friday’s sweetheart dance. I certainly never celebrated a zit. This was different. Babe, your pimples weren’t pimples. They were cures. They were miracles working. They were little mountains of more time given. We were celebrating a zit as if it were an amazing part of our lives. I applied the prescribed cream, your skin swollen from the breakouts, bumps upon bumps, tender to the touch. They covered every inch of your back, your face, shoulders, arms, even elbows. Your skin was getting worse and worse by the day.
Really? Hooray for this?
I applied cream to a million red bumps, lovingly. Like it was suntan lotion. I didn’t miss a spot. Your whole skin texture was changing into bubbly, deep, toxic acne. I tried to Zen out, back to high school, back to Kool-Aid and whiskey and weed.

“Okay, I think I got it all.” I kissed your lips, the only spots without bumps. “I’m gonna be late for work.”

…

“I miss you already.”

“I’m still in the driveway.”

“It’s hard to see you go, beautiful, beautiful girl.”

“I’ll see you soon.”

“I’m so happy we moved in together.”

“Me too. Now go unpack the boxes in the kitchen.”

“Fine. I love you.”

“I love you more.”

chapter forty-one

everything’s not lost

When a relationship is new, you stand together at the edge of heartbreak, not knowing where it is going, unsure of whether or not you really fit together, feeling enraptured one moment and terrified the next. Although you feel like throwing up all the time, you also feel pretty alive. It’s exhilarating and also completely nerve-wracking. The possibility of imminent heartbreak really keeps you on your toes.

I understood every word Susan Piver wrote, an instant bond with a self-help book. You’d think I was getting all airy-fairy on you. Next I’d start using crystals and burning incense and chanting, but it was the next paragraph that got me believing:

The more deeply you love, the more closely you feel the possibility of loss. It’s really true that loving something or someone dearly is the most vulnerable position you can ever find yourself in. On one hand, you are filled with indescribable joy and gratitude for such incredible good fortune. On the other hand, you could lose it. This is totally true. And P.S. you will, whether by falling out of love, finding a new love, or, of course, by death.

She then writes of her love for her husband and considers that one day one of them will die first, leaving the other behind. Wait, what? Why did I feel the need to read this stupid book again? Why did I think
The Wisdom of a Broken Heart
would be a good read? I am retarded. Clearly. And into self-torture.

The love you so painstakingly searched for will eventually disappear. No matter how carefully and beautifully you build your castle together, one day it will simply wash out to sea.

Good God, that’s depressing. Wash out to sea? So in other words, Snow White was wrong? There’s no
forever
, no wishing well, no song break. I knew exactly what the author meant by standing on the edge of heartbreak. She didn’t believe in words like
forever
or
always
or
evermore
. She didn’t sing songs of
someday
. She wasn’t a Disney princess. I wonder if her husband had had cancer.

From:
[email protected]
To:
[email protected]
Sent:
Thursday, May 18, 6:15 p.m.
Subject:
yum

ate a pb&j, letting it settle before taking a bath.

bath.

yum.

like those.

especially now, looking out the window of our backyard,

sitting in the peace of the house we share,

fighting this insane battle of health, life, care…

so much has changed.

i smile.

i love you so goddamn much.

for where we are, for how far we have come.

for how we never gave up on each other,

for how we somehow made it to this place.

i love you for it, i love you despite it,

i love you with it, and without it.

smile.

smile at all of it.

and then smile again knowing

i am with you. in every way.

"Everything's Not Lost"
Coldplay

From:
[email protected]
To:
[email protected]
Sent:
Thursday, May 18, 6:39 p.m.
Subject:
Re: yum

thank you…

for reminding me just how sweet you can be.

just how beautiful and moving your e-mails are.

and just how lucky I am.

I love you.

healthy you.

sick you.

beautiful you.

and nothing, even cancer

will change that.

…

I didn’t know your parents then. We were merely strangers under stress, trying to care for a shared loved one. I understand that stress now, but I didn’t then. I kept thinking; if your parents knew what you were going through, why wouldn’t they be here more? It wasn’t as if we were keeping it a secret, your health. So, when your stepfather called and started telling me about his busy schedule of summer cello playing and church events, I was irked. Maybe even rude when he then told me about the fine lawyer he was chatting with in Los Angeles who was ready to review our failure to diagnose case.

“The lawyer needs the names of the doctors who Anthony has seen to check for conflicts of interest. He also needs copies of Anthony’s health plan contract to see what Anthony’s reasonable entitlements are. Chas, can you get me this information, and I’ll e-mail it to him?”

Honestly, Anthony, I had this superficial hostility toward them. I know now that this happens in this kind of situation. But, I needed them then. Not when it was convenient in their schedule to visit, but every day — and you needed them. I should have just said it: “I need your help.” But, I didn’t know how. So instead I said, “Anthony isn’t feeling great these days. I can’t tell if he’s discouraged or fatigued. It’s been hard… I think he needs an outsider to talk to. Maybe a therapist. I will try to stay in touch more. Anthony is having a tough time keeping up with all the phone calls. Times are tough, but Anthony seems to be strong and continues to fight best he can.”

And in response, your step-dad said, “I am so, so sorry that Anthony is sick, and that he is discouraged. Just know that it goes with the heavy chemo, but should be better after the dose is adjusted. I agree it would help to have an outsider with whom he can talk.”

“Yeah… we have good days, and then, absolutely awful ones. Somehow we’re staying balanced in between. The hardest part is not being able to be with him throughout the day. He hasn’t needed constant care until recently, and it’s been difficult to juggle. I find myself tired and at times a bit overwhelmed, but I’m trying to remain strong, too.”

“You need to conserve your energy. We send you magical strength pills from the depth of our hearts.”

“Thank you.” I was ready to hang up the phone.

“We love you both, and think about you all the time. Give Anthony a hug for me, for his mother too. And Gladys, too. We’ll call you later in the week.”

“I will. It was nice chatting with you, give my love.”

…

Monday, June 5

today

mondays.

some of you will roll your eyes when you read this,

but i never really had anything against mondays.

in fact, there was a part of me that kind of

looked forward to them: a new week. beginnings.

when i started chemo at USC, and it was determined

my visits would be weekly, i was asked,

“is monday okay?”

“perfect,” i said.

now i’m not sure how many weeks i’ve been at it over there,

but some things have changed during that time:

1. my skin (see earlier posts)
   
2. an aversion to needles (huuuhwhabrrrk!)
   
3. mondays suck.
   

it’s a pavlovian thing, you see.

like a trained dog, my body has come to understand

what it means when i wake up monday morning,

drive to the treatment center,

plug that IV to my arm,

and take it in.

it means yuck.

it means a week of getting your ass kicked all day

by an opponent you can’t even see.

it means getting one bite into a delicious meal

and almost throwing up on your friends.

it means tons of sympathy from your friends

and unending pampering from your girlfriend

(but that’s not helping the point, so skip that).

coming home after treatment

i tend to feel like a toxic waste mop,

and so, i’ve decided to do

what any responsible person would do when

their body is filled to the brim

with chemicals and experimental drugs:

write.

i’ve fallen into the habit of waiting

for something significant, or a scrap

of good news to sit down and blog.

bad habit.

writing heals

and in this case, it also informs.

so, for the sake of my health,

and for the sake of this blog,

mondays are now also for writing.

see you then (and maybe in between).

posted by Anthony Glass at 5:46 p.m.

…

I’d be lying if there weren’t moments I begged for reasons not to go to treatment. I wanted to call in sick to you being sick. It’s not a matter of the hospital that bothered me; that was something I was getting used to. However, treatment, chemo — that was something I could never get used to.

Recliner after plastic blue recliner separated by a curtain. Every chair out of thirty occupied. It was never quiet at the day hospital. Each chair faced another chair, a twelve-inch television screen suspended inches from patients’ thinning faces, distracting them with soap operas and talk shows. Nurses weaving in and out of curtains and thirty blue plastic recliners filled with bodies receiving a concoction of drugs. Some people appeared sick, others became sick. Do you remember the time there was a code blue sitting next to us? Scared the crap out of me. I don’t even know what code blue means, but the staff took it very seriously. Curtains were drawn, gasps heard, we never found out the outcome and I was totally okay with that.

The unknown of treatment was frightening. People talked to themselves. Cried. Coughed. Vomited. Pissed. There was hardly any real space in the four feet that separated the blue recliners. I had a difficult time angling myself to hold your hand, kiss you on the forehead or watch TV. You’d wear sweats and button-down flannels. Your body hot, then cold, hot, cold. The nurses were always checking temperatures and blood pressures and changing bags suspended on IV poles. Rummaging through drawers full of tape, needles, tools, gauze. Every time we went to the day hospital a nurse asked if you had a direct line, then poked your bruised arm with another needle.

I don’t know if you knew this, but you weren’t like the rest of the patients, babe. When all the others were receiving intravenous drugs, distracting themselves with television, you’d happily listen to music, at times singing loud enough for a neighbor to hear. You’d nap through hours of chemo listening to the
Liquid Meditations
CD your mother gave you, but bands like Coldplay and Great Lake Swimmers and The Editors and Clap Your Hands and Say Yeah — those were the ones you’d sing to. Here’s what made you stand apart: When you sang, you radiated this warmhearted awareness of something bigger. Something bigger than everything and everyone. Like you knew something the rest of us didn’t, a knowing beyond knowing. You could catch it in the way you sung, see it in the corners of your smile. It made me want to climb inside you. Be closer to hear the heartbeat of your truth, hear the music of your divine understanding. I guess looking back on it, it kind of makes sense that you were happy. You understood the beauty of it — that cancer could be a blessing of focused time shared.

There was a kid a few years younger than us who’d pretend he was fishing while getting his latest dose. He’d cast, voicing the twirling noise the line makes, then a splash sound. He’d smile at you with a head nod. He too knew of something bigger, bigger than everything and everyone. He caught a rainbow trout once, four pounds of splashes and noise. You kept singing Coldplay as you handed him the net. “Lights will guide you home. And ignite your bones…” He, too, started singing as you took an imagined photo of his prized catch.