ABOVE: (LEFT) ROUND 1 (RIGHT) ROUND 2
There is a stop sign posted half a block from my house that, circa 10 days ago, I could barely walk to. With my mother holding me around the waist, the two of us feebly hobble down the sidewalk in order for me to get some of that Vitamin D and “exercise” that everyone seems to think is so important. By the time I touch the pole I am so winded and utterly exhausted that I’m ready to sleep. And I apologize for the redundancy, but I just really want to stress that I just walked 300 feet with the assistance of my mother and am now ready for a nap.
I am a side effect.
But that was ten days ago. Today I’m walking through a grocery store at 11 a.m. I’m still leaning a little heavily on the cart for support, but we’ve been meandering for fifteen minutes and I bet I’ve walked at least two thousand feet. Maybe even three thousand!
I can eat here and there without the assistance of the vaporizer and I can walk and I can exist in a world without vomiting because the chemo is slowly draining from my system and everything is getting better and sounds don’t make my stomach churn and I’m starting to live again and . . . today I go back in for Round 2.
Today I start over.
There is a strange elation and excitement that fills my body and mind and maybe it’s just hopeful naiveté but I am excited to go back in.
I’ve been receiving letters in the mail and phone calls and emails and messages via social media from various people—friends, family, friends of friends, friends of family, and even strangers who say they’ve been reading my blog and watching my story unfold and looking at the pictures my wife has been posting and they’re just . . . amazed . . . at our fantastic attitudes.
“You’re able to laugh at the whole thing!” they say and I, with tears streaming down my cheeks and quaking hands, think, Har-har-har.
But the letters and text messages keep coming. “My niece has cancer and I told her your story and sent her to your blog,” and, “My son had cancer and God bless you,” and, “Your story is so inspiring. You put my life into focus,” and I sit in my chair reading these and feeling like a fake because of all my talk about death.
Last week I was in a state of true fear about my approaching second round. I couldn’t dream of willingly going back and allowing them to do this to me, setting me back to square one. The needles, the poison, the nurses, the dark bags of chemicals dripping into me, the smells, the puking, the pain, the hunger, the fear, the fear, the fear and, most especially, The Unknown.
It’s truly not the impending death that destroys you but the utter hopelessness of life, your energy being sapped and drained from your body until you feel like the last brittle leaf hanging onto a tree in an autumn storm.
Even chewing your food becomes a chore and a challenge because it takes too much of your scarce reserves. But, Johnny, you ask, why don’t you just get high all the time? If it helps your appetite and helps you sleep and gives you energy? Why aren’t you getting baked? Go green! And the answer to that, my little Doobie Brother, is because, while that little miracle drug works like a charm, it comes at a cost, an actual hard cost. I’m talking finances. And I can’t just go on a binge and burn through every green dollar I own. For the next six months I have to buy groceries and pay rent, not to mention the myriad of other expenses that occur on a regular basis: car insurance, health insurance, electricity, etc., etc. May I remind you that I’m not working ? We’re rolling in a car with three wheels that’s running on fumes and a prayer.
Watching our pennies disappear one by one, we call to inquire about government assistance but they tell us we don’t qualify because we “made too much money last year.” My wife says, “Yes, but last year my husband was healthy and had a good job. That makes sense. This year he has cancer and can barely walk and definitely can’t hold a job and we need to eat,” and the person on the phone says, “You will qualify next year,” and my wife, says, “That doesn’t make any sense,” and the person says, “We rate you off the previous year,” and my wife slams the phone onto the table.
I watch the clock tick tock away and think that every second I’m just a little closer to The End, whatever result it may be, life or death. However this fight turns out, we’re chugging full steam ahead.
Two hours till go time and I feel positive. I try to soak everything in because I know that my happy moments are limited and finite. I know that tomorrow morning I’m going to be lying in bed with my eyes slammed shut, feeling sorry for myself. I know that tomorrow there will be nothing but pain and hunger. Gotta get sick to get better.
So today, now, in this moment, I just soak it in, trying to take pictures of everything in my mind, storing it all away to look at later. How does the air smell? How do the birds sound? How does this food taste?
Chemo ruins everything. It manipulates your taste buds, turns your eyes to delicate glass orbs and your ears to amplifiers. Everything is blinding and gluttonous excessiveness. Every piece of stimuli feels like a flood hitting your brain and drowning it. It feels like everything is coming in but nothing is going out and your skull becomes crowded with blurring and buzzing. Chemo covers your brain in moss and turns all your memories and thoughts into fuzzy bubbles and television static. Life becomes a copy of a copy of a copy; details falling away, edges blurring, clarity collapsing.
Courage is not the absence of fear, but the triumph over it (and yes, I read that on a poster in a doctor’s office). And, this Courage with a capital C that I have acquired quickly becomes courage all lowercased once we pull into the parking lot and I’m left staring at the monolithic hospital that will become my home for the next five days. I stare at it, my prison, trying to keep my composure steady, my attitude high.
My wife says, “Look here,” and I turn around and she snaps another photo of me entering the hospital. I look considerably thinner in this one; my beard gone, my cheeks a little deeper, my eyes red and dry around the sockets.
We enter the building and my courage sinks down and vanishes. I squeeze my hands into fists and think, I don’t want to be here I don’t want to be here I need to get out of here, but I keep walking, into the elevators, onto the fifth floor, down the hallway, into my private room, my spa, my cell.
I lay out all my personal accouterments (journal, pen, iPod, Bible) and sit on the bed. Jade finds the show about the family with all the kids and now I guess they’re having another one. I ask her to change it. The show about the man losing his face is on again and we decide to rewatch it.
The nurse enters with the IV while I stare at the TV, thinking about the wilderness and camping. She sticks me and walks away and that’s it. I’m now tied up to the stables like one of the horses in a sad western. Me and my pole, buddies for life.
Suddenly, the machine I’m connected to starts beeping and a small Asian nurse in her early fifties rushes in, presses a few buttons, and straightens out my tubes. She says, “Hello. My name is Sue. I will be your nurse for the next couple days. You are . . . Johnny.” I smile and wave my hand. She says, “How are you doing?” and I say, “Well, all things considered . . . ” and she says, “Yes. You have very bad cancer but we are going to fix you! You are young and strong and you have good blood and good veins and good attitude!” and my wife says, “Sometimes . . . ” and Sue laughs and she lights up the room and she says, “We no allow bad attitude here! You take it somewhere else! Here—only good attitude! Because we fix you! I be right back!”
And she turns to leave and I say to Jade, “I like her.” Sue returns with my first bag of chemotherapy and a small piece of chocolate, which she gives to me. “You feel well? You no have chemo for two weeks?” and I say, “Yes. That’s right,” and she says, “You eat this now before you get sick!”
I open the chocolate bar and she flips a switch and here . . . we . . . go . . . .
*** *** *** *** ***
Hours later, I wake up all alone in the middle of the night. My room is dark and quiet save for the incessant beeping that is coming from my IV machine. I shift my body weight and examine it to see if there’s some giant red warning button I can push.
Nothing.
I navigate my hand down the side of the bed and find the CALL NURSE button. A few moments later, a pale chick who looks like she’s been working the nightshift for too long wanders in and asks what’s wrong. I tell her I don’t know. I tell her my IV thing is beeping. She hits a quick combination of buttons and everything goes silent. I ask, “Why does it do that?” and she says, “Means there are bubbles stuck in the tube,” and I say, “Bubbles? Won’t those kill me if they get in my veins?” and she says, “Yeah . . . . . they can,” and then she turns and leaves without saying anything else.
I lie in the dark and stare at the shut blinds, wishing I could see the stars but knowing that, even if they were open, LA’s blanket of smog would cloud them from my vision. I think about my wife and mother, both sound asleep in beds forty minutes away. My wife has to work in the morning so I’m flying solo tonight. We toyed with the idea of my mother staying behind but ultimately decided that the hospital bed just wasn’t big enough for the both of us, even with her curled up at the bottom like so many teacup Chihuahuas.
In the hallway I can hear various machines and hospital mechanics at work in the silent hours. Beep. Beep. Beep. A heart monitor. I hear a machine that sounds like it’s breathing for someone. Kerrrrr—inhale. Vhoooosh—exhale. Underneath is a man moaning, his wails creeping down the hallway like fog. It is the groaning of a man lost in delirium.
I shut my eyes for a moment and when I open them, an old man is standing in my room with a plastic briefcase. He pulls out a syringe and takes my blood. I shut my eyes and when I open them again, a young Latino gentleman is standing in my room emptying my trash can. I shut my eyes and when I open them again, a young African American woman is standing in my room with my breakfast. I tell her I’m not very—gag—hungry and would she please mind taking it away but leaving the orange juice, which I casually sip on.
I stare at the clock and watch its arms turn. I stare at the window and watch the shadow of the sun rise. I listen to footsteps in the hallway pass. I try to catch conversations but nothing sticks. I wonder who else is on this floor: old people, young people, someone I could talk to, relate to, converse with?
I hate the doctors telling me what I’ll feel, how I’ll feel, what to prepare for, what to expect. They only know because they’ve been told. They don’t know. They have no personal point of reference. This is one of the loneliest factors—surrounded by people, you feel alone in your experience.
My mother arrives; my wife arrives. I curl into a ball and shut my eyes. It’s happening again: never-ending motion sickness. I put my hands over my face and breathe deeply. Jade asks how I’m feeling, and instead of answering, I just shake my head, trying to fight back The Great and Hopeless Depression that is rising up inside of me, threatening to take over, The Voice that whispers inside my head, “Every day. Every day. Every day you’ll be sick. I’m never leaving you. You’re trapped here, stuck here, and every day those nurses are going to enter and keep filling you with Sickness, more and more, and just when you think it’s over, you’ll be back and you’ll do it again. You think today is bad? Think about tomorrow. Think about the next day. Think about next week and the week after that and the month after that and the month after that. This road you’re on is a long one, Johnny, and I’m going to ride your shit into the ground. You think today is bad? You have no idea. You have no idea what I’m going to do to you. You have no idea how long this will go,” and, because I no longer have any grasp on time and because my minutes stretch on for days, this really could be some relative millennia.
Anxiety begins to twist a knot in my guts as I try to understand the overwhelming process that lies before me and the pain I have to endure before this is all over. My mom asks if I’ve eaten breakfast and I shake my head again, hands still over eyes. My mom asks if I need to “medicate,” and it takes me a moment to grasp what she’s asking me. I nod my head and slowly sit up, the movements sending my equilibrium reeling. I can feel my brain sloshing around inside my skull like dirty water in a fish tank.
My mother sets a small suitcase on my bed and unzips it, pulls up the cover and begins digging through various articles of clothing, bathroom paraphernalia, and pill bottles, pulling them out one by one. Then I see it. Sitting at the very bottom of the suitcase is my vaporizer. I chuckle thinking about my mom smuggling, what basically amounts to a very fancy pipe and soft drugs into a hospital for me to smoke. Do I want to “medicate”? It’s the closest thing my mom will ever say to, “Honey, do you want to get baked?”
But, I suppose this is what it’s for. This is how we should be treating it. If medicinal marijuana is to be used and respected as an actual drug and if it actually wants to shake it’s street stigma, then perhaps I should be medicating and not getting high.
Jade helps me stand up and leads me into the bathroom. I lean against the wall and slouch to the floor. My mother hands me the vaporizer and, while I try to find a proper place to set it, she plugs it into a nearby socket. My wife hands me a small box that contains various strains of medication, as well as my grinder.
My mother turns to leave and my wife holds her hand out to me and says, “Here. I made this for you.” I reach out and take a toilet paper roll stuffed with scented dryer sheets. She says, “It’s a filter . . . to hide the smell.” I say, “You’re Bill Nye!” and she says, “You’re Tommy Chong.” I smile and she shuts the door.
The bathroom is silent save for the quiet murmur of the television creeping under the door. I open a pill bottle, select a “pill,” grind it up, place it in the bowl, heat it up, and pull.
We have take off.
The anxiety in my stomach loosens, loosens, loosens, disappears. I begin tapping my finger to some Beatles song that pops into my head. My depression vanishes. I hold the homemade filter to my mouth and blow through it. Everything smells like Mountain Spring Grass.
I pick up a comedy book about ninjas called Real Ultimate Power written by a man posing as a child named Robert Hamburger. To this day, it’s one of the funniest books I’ve ever read, stoned or sober. I laugh so hard my sides hurt. I laugh so hard that I cough. I laugh so hard, I can’t breathe.
In the other room, I hear a nurse enter. Sue. I hear my wife say that I’m in the bathroom. I hear the nurse ask if I’m having a bowel movement. I hear Jade lie and say, “Yes.” I hear the nurse say she’ll be back.
Jade knocks on the door and says, “Hurry up in there, White Snoop Dogg! They’re looking for you!” and I say, “I’ll be here for five days. They’ll find me,” and I laugh and take another hit and then I say, “Just relax, White Marge Simpson.”
Robert Hamburger talks about how he saw a ninja cut off a man’s head once just for dropping a spoon in a restaurant and then I stare at an illustration of a samurai for 15 minutes. The artistry of the drawing is astounding.
In the other room, I hear Sue return and ask where I am. I hear Jade say that I’m still in the bathroom. I hear Sue ask if I’m constipated. I hear my mother say something about, “Just being a man, taking his time.” I hear Sue say she’ll be back. I hear Sue leave. I hear Jade bang on the door, louder this time and far more aggressively. She says, “Hey, Jerry Garcia. Get your ass out here! You’ve been taking a shit for 35 minutes, and it’s starting to look suspicious.”
“OK, OK,” I mumble and slowly clean all my paraphernalia up, tucking it behind the shower curtain. I crawl to the toilet, using it to brace myself while standing up and then slowly walk out of the bathroom with the biggest, dopiest expression my face can muster. As I open the door, I try to hide it, not wanting my mom to think I’m . . . what? Wait . . . high . . . ? She knows. There’s no reason to hide it. Is this OK? What is happening? I think I’ve done something wrong.
My mom says, “Take your time,” and my wife says, “You know how uncomfortable it is to lie to them? They’re freaking out because they think you’re constipated. You do that again and I’m telling them you need an enema.”
Just as she finishes her thought, Sue walks back in with her cart and says, “Johnny! You are here! You are all right?”
And I say, “Yes! Great!”
And she says, “You poop OK?”
And I say, “Far as I know!”
And she says, “You in bathroom long time. You no strain?”
And I say, “No. Just reading a book,”
And she says, “OK. You tell me you constipated. I get you more pills,”
And I say, “OK.”
She tells me she needs to take my vitals and I say, “Cool,”
And she says, “You want to sit down?”
And I say, “Can I stand?”
And she says, “You . . . can . . . if you have the energy,”
And I snap my fingers and say, “Sweetheart, you better believe it.”
She sticks a thermometer in my mouth and I say, “How’s it look?”
And she says, “You’re alive. That’s good,”
And I say, “No doubt. Hey, thanks for giving it to me orally. The guy last night gave me an anal exam and it was really painful.” Jade says, “JOHN,” and my mom says, “Ew,” and Sue says, “What was his name?” and I say, “I don’t know but he just kept breathing really heavily in my ear.”
Sue wraps a cuff around my bicep to take my blood pressure and I casually glance around, overly aware that my heart seems to be beating weirdly slow. Buh-dunce . . . buh-dunce . . . beating to the rhythm of a Pink Floyd song. She presses a button and I feel the band tightening on my skin, squeezing it like a really weak boa constrictor and then slowly, slowly, releasing. Sue looks at the digital read out and says, “Huh,” and I say, “What?” and she says, “Your blood pressure is a little low,” and I laugh and my wife quickly interjects with another half-cooked lie. “Yeah, it’s always a little low. He’s just a very chill fellow, he-he . . . ” and Sue says, “Hmm . . . ” and I shrug and say, “Sue, listen. Listen. I feel good. I feel great. You wanna see me try to moonwalk?” and she says, “Nope. I’ll be back later. You strong. Good attitude.”
Over the course of the next few days, Sue becomes a fourth member of our group, sitting on the end of my bed and hanging out to chat after she takes my vitals. She hangs around my room even when she’s off duty and pokes in before going home just to make sure the night nurse has everything under control.
In the mornings she brings me muffins, and even though I can’t eat them, I am grateful for the simple gesture. In the afternoon, she comes to me and says, “Nurses have big feast downstairs. Pot luck. I bring you food,” and then, sure enough, forty minutes later she shows up with nothing less than eight plates of home-cooked goodies ranging from pastas to banana bread to casseroles to desserts hailing from various homelands; Germany and Holland and Spain.
She tells us about her past life—where she grew up, what her parents did, how long she’s lived in Arcadia. She tells us she loves to cook and says she’ll bring us some “real Korean food” after catching us eating Panda Express for the third day in a row. Twenty-four hours later, she appears with a menagerie of hot plates and store-bought chocolates that the four of us share in a communal setting.
Cancer is a very lonely disease to have because most people you know simply fade into the background. It’s a disease that makes people uncomfortable. They don’t know what to do or what to say or how to respond or what to bring you. Nobody is showing up to sign your cast and I believe it’s just too depressing to come visit your friend or family member while they slowly turn into dried fruit. Here you are, stuck in a bed, a needle shoved in your arm, looking like a pretty accurate living depiction of a mummified Egyptian Pharaoh, which is to say, decrepit and dusty. Your friends enter and they see you as you are, not as you were, and they see you trapped here in this hospital, in your cute little nightgown and they know you’ll lie here for six days and they feel bad for leaving. They feel like they have to stay or they’re abandoning you. They feel guilty going back to their lives while their friend molds and becomes one with the hospital bed in holy union. It’s easier . . . to just not show up. Things are safer at a distance.
And for the person with cancer—for me, for you, for your cousin or aunt, for the person sitting in the chair or the bed, for the person getting the chemo drip-dropped into their veins like a toxic tributary—this act is beyond infuriating.
It is heartbreaking.
During the Apollo 8 missions, astronauts Borman, Lovell, and Anders would lose contact with Earth for forty-five minutes as they disappeared behind the far side of the moon during each of their ten orbits. Some may say it’s the loneliest anyone has ever been, being completely out of touch with your own species.
The radios were dead. Contact was dead. The three of them were in complete and utter isolation, blocked off from the entire human race. Granted, Earth was still there and Earth still carried on and the Earth people still went to work and smiled and laughed but somewhere in the darkness, three men sailed quietly and desperately through the solitude just hoping to come out the other side, hoping to reestablish contact, hoping to, eventually, be integrated back into humanity after they’d viewed it from such a new and exhilarating perspective.
Ideally, I don’t have to spell out my analogy for you because I think it’s fairly spot on. Also, P.S.: In my parallel, I am Frank Borman because he is straight up dreamy. My mother and wife can fight over the other two in our made-up, playtime scenario.
Your family members who you’ve grown up with and your friends who you’ve shared your life with, people who would stand up with you in a fight, back down against cancer. Nearly everyone leaves you alone, fragmented, isolated, and blocked off from the world. People stop calling. People stop writing. People stop coming by. Even before you’re gone, you don’t exist. You’re the dead and dying dog at the shelter. You’re the starving kid in Africa. You’re the homeless family on the street, and you are easier to ignore.
Your sickness, your issue, your thing you’re going through is so bizarre and weird and awful and outside the realm of possible imaginings that people just slowly vanish into the crowd, and while you sit alone, grasping at any hope, you think about them and you wonder what they’re doing and you wonder why they’re not calling or writing or coming by. You wonder what you possibly could have meant to them. It saddens you, it angers you, and it breaks you. It makes you feel like an old and forgotten toy left out in the rain.
And I say this not as a self-pitying statement (although I am aware that it is how it sounds), I say this as a warning. If someone you know has cancer and if you’ve made yourself scarce, you have abandoned a person of your tribe during his or her greatest need.
I get it. It’s hard to be involved. It’s hard to step up to the plate and put someone else’s needs before our own. It’s hard to be selfless, and it doesn’t come natural to any of us. We’re humans and we want things to be easy, but we’re humans and we’re in this together. And maybe the awful truth of cancer wouldn’t feel so foreign to us if we all stepped onto the altar and looked into the coffin; if we all took a chance and said, “I’m here for you because you need me to be.” When you watch from a distance, everything is filtered through the lens of a camera. It’s difficult to get your hands dirty when you just paid for a manicure.
But Sue . . . Sue was born to have dirty hands. Her short-cut nails spoke of a baker who had her fingers in many pies. She cared with the true compassion of a parent. She wasn’t merely doing a job. She was living her life and making sure it was worth something.
I think about Sue often, and though I’ve never written her a letter, I’ve sat down to do it on several occasions but am always stopped by some voice asking if she would remember me, another Face in the Crowd. She had a significant impact, not only on my cancer journey and experience, but also on my healing process and my point of view on life. How can I be more like Sue? How can I help those around me? How can I give what I have—my heart and soul and identity—how can I pour that into something to show someone love and compassion?
There are people that try to make the world a better place. Budda. Jesus. Bono. Sue. We are all capable if we try.
ABOVE: Me on my last day (in the hospital, not on Earth, even though it does look that way). Sue on far left.
johnny be bald 