In 2004, Coastal Connecticut editor and Madison resident John Gaffney was diagnosed with acute leukemia, and given minimal chance to walk out of Middlesex Hospital in Middletown. He did, on April 4, 2004. This is the story of his return home that next day and the experience of being a cancer patient in the earliest days of treatment.
You leave the world that you’re in and go into a depth or into a distance or up to a height. Then you come to what was missing in your consciousness in the world you formerly inhabited. Then comes the problem either of staying with that, and letting the world drop off, or returning with that boon and trying to hold on to it as you move back into your social world again. That’s not an easy thing to do.
Fogarasi sent me home with a short list of instructions and a few prescriptions. ATRA, the life-saving, migraine-producing, “holy shit can I find a wall to bang my head against 13 pills a day” drug would continue. Dilaudid in pill form, thank you very much. Fever, go to the emergency room. Night sweats, go to the emergency room.
My first night home I woke soaking wet at 5:13 AM. No fucking way was I telling anyone. Not going back. Not hap- pening. If I went back, I’d never get out. I was sure of that. I threw my drenched sulfur-smelling T-shirt in the garbage so nobody would find it, put a hooded sweatshirt on, and sat on the couch.
Out of breath. Little rim of sweat on my upper lip. Little bit of fever shake. Home.
My bookshelves. Books. My beautiful books. McCarthy, Hemingway, Stone, Wolfe, Faulkner, Jung, Joyce. But I didn’t have the juice to walk across the room to the bookshelves. I picked up a coffee table tome called The Power of Myth, bought at a secondhand store a few weeks before the terror. It is a transcript of Joseph Campbell’s PBS interviews with Bill Moyers, which ran in 1986. First thing I read: “People say that we’re all seeking a meaning for life. I don’t think that’s what we’re really seeking. I think that what we’re seeking is an experience of being alive.”
Next, I found a cloth shopping bag full of cards. I wasn’t allowed to see many cards in the hospital because they carry germs and a stray germ in my system could have been an emergency. Now they were here. Hundreds of them. People from work, relatives, neighbors, schoolmates from Jersey. Mass cards. There must have been 20 mass cards, most of them from the middle of March when I was in critical care. There is no intensity of mixed emotion quite like looking at your own mass cards. Then the weight of what this looked like from the outside world started to crash in on me. My heart started to race and I was scared. Started to sweat again. Back to bed and panicked because my side of the bed was soaked and my wife would find out I had a fever. Got back up. Took five ATRA and two dilaudid. Paced around the living room.
Then I had the most dangerous idea. Let’s go eat breakfast. Let’s steal this car I own from the driveway, take $20 from my wife’s wallet, and drive. Let’s drive around town. Slide in Darkness on the Edge of Town and play it real loud. Let’s drive by the beach and see the sunrise. Let’s go to Nick’s Diner and get some eggs and sausage and English muffins and coffee. Coffee. What a concept.
I dressed, remembering a baseball cap because my hair was tufty. As I left the house and started the car, I felt crimi- nal. I wasn’t supposed to do this. No one would know where I am. I drove about 200 yards down my street and on to Route 1 when the fatigue, dilaudid, and ATRA hit like a brick. There would be no drive. But there would be breakfast. I hadn’t had breakfast in 36 days. I pulled into the strip center where Nick’s neon “open” was lit. Getting out of the car took my breath. Opening the door to the diner, getting to the table, and sitting left me huffing. Little blonde waitress brought me coffee and a good morning.
The coffee tasted like iron. Like ground dirt. It darkened my throat. Nothing was ever going to be normal. Even coffee sucked. I ordered fried eggs, sausage, and English muffins. Didn’t look up from the table because someone might recognize me and call my wife, or the doctor. I mopped those eggs with the muffins and a chop of sausage and god- dam that was good. Good as it ever was. Thick. Fresh. Right. The next swallow of coffee got better. Then I hiccupped. Loud enough for the geezer next to me to fold down his USA Today. Another mouthful of eggs. I started sneezing. Could not stop sneezing. Recovered from one. Blew my nose. Sneezed again. Again. Again.
“Are you OK?”
Well, little blonde waitress lady, no. I actually beat 35 days on a cancer ward with acute leukemia and I’m not supposed to be here because I have no immune system and I guess I’m having a bizarre allergic reaction to the eggs, which I guess can happen because anything can happen and I know that because I’m sitting here talking to you, fucked up on morphine derivatives.
“Could I have the check?” Sneezed. Again.
“It’s OK. I got it. Maybe you should go home.”
Time for the hair thing. While I was in the hospital I didn’t lose my hair for a couple of weeks. In fact, I grew a decent beard. But then it all started coming out in clumps. It got in my nose and mouth. I couldn’t see it, but I could see the reaction on people’s faces when they saw me. Then there was the fact that everyone who visited brought me at least one baseball cap as a gift. I had no reason to look in a mirror. I peed into a plastic receptacle by my bedside. I had to shit into another kind of plastic bowl. And when you’re dragging two IV towers with four tubes, you need a reason much more urgent than vanity or curiosity to get up and cross the room. I never showered, shaved, or brushed my teeth. When you have no immune system these things again are risky ventures.
After the breakfast sneezing field trip, I slept until noon. The shakes were still there. I loaded up a couple of sweaters and sat at the dining room table where my wife, mother-in-law, and father-in-law ate leftover chicken and potatoes. The in-laws lived in Croatia normally. They were here to help out. Here’s all you need to know about my father-in-law. He was convinced that my 35-day hospital stint was caused by allergies.
I showered. Kept the water really hot and stood there for what must have been 20 minutes. I didn’t think about anything. I completely engaged with warmth and the ability to control the temperature. Warm. Warmer. Hot. Hotter. After I turned it off the cold air brought the shakes and I yelled for Lillian. She came in with an extra towel and a down quilt. Back to bed. Back to sleep.
I woke again at two. Went into the bathroom to brush my teeth for the first time and took a look at what used to be John Gaffney. I always thought I had great hair. Where I grew up and when I grew up, we were all about hair. It was blonde and wavy and feathered. My friend Byrnsie had hair that was so nice that we called him Farrah. Back in the day I blew mine dry with a 1500 watt Conair motor, a round brush, pulled it straight, curled the back. In the 80s you either blew dry or went big and curly. But you went somewhere. Now here I was. Little patches in the front and on the sides. A fairly healthy clump near my left ear. I had my eyebrows and eyelashes. I at least didn’t look like I got too close to an M-80.
I announced to Lillian: “I want a haircut.”
“You can’t do that. It’s cold out.”
“Please. Let’s do this.”
She had already scoped a place on Route One where the hairdresser’s mother was a breast cancer survivor. She wasn’t planning on taking me until later in the week. Here I was sitting in her chair, looking at a huge mirror. The stylist gave me a hug and put an extra towel around my neck. She was a little weepy.
“Do you want me to shave it or buzz it?”
I couldn’t wait to get away from that mirror. When you’re a cancer patient your brow swells into Frankenstein proportions. Your face pulls back from your teeth and all of a sudden you look like Alvin from the fucking Chipmunks and you want his baseball cap.
The kids were afraid of me. They wanted Daddy. This bald, skinny guy with the desperate eyes, out of breath, and sleeping all the time wasn’t Daddy. For the first few days I was home, I wasn’t supposed to have physical contact with the kids because a cold would have meant the emergency room. They stayed close to their grandparents, watched a lot of TV, and stayed in their rooms.
My spot at home, my Daddy power spot, was an armchair in the living room corner. I never watched TV. I sat in the corner and read a book. Before I got sick, Aidan would bring a book from his room and sit with me, and I’d read to him.
On Wednesday he came out of his room, hair wet and brushed from the bath, handed me a book and popped down next to me. No words. I wasn’t about to chase him away if he was carrying the bubonic plague.
The book was called Henry and the White Wolf. Henry is a hedgehog that one day feels too tired to gather acorns. His mother goes to see the wise old owl who tells her that Henry must go to the lair of the white wolf to find the cure for her son. Everyone knows hedgehogs don’t go to the white wolf lair. Hedgehogs die in there. Henry screws up enough courage to visit the lair. The white wolf is a healer. She tells Henry to be strong and courageous and to drink a potion of roots, berries, and a strange green liquid. It made Henry sicker but the wolf took care of him. He lost all his fur. Then he started to get better and when he went back to school, all his friends treated him like a hero because he went to the lair and survived. All except one friend who said: “Henry you look different than all the other hedgehogs. Are you OK?”
He was. He even lived happily ever after. Goodnight, Aidan. I love you.
Sparks of energy died like wet matches. Up at dawn emailing my boss looking for a back-to-work date. Back to bed at 7. Walking the street outside my house, out of breath, and dizzy. Bathing in “London Calling” by The Clash and a big jingle-jangle harmony song by Golden Smog called “Until You Came Along” at mother-in-law rattling level. Back into bed with meditation music. May I be happy. May I be peaceful. May I be healthy. May I be healthy. May I be healthy. On the phone after dinner with everyone who sent a card, or called, and even those who didn’t. I was going to show you the higher purpose. It’s OK if you didn’t call. It just means you didn’t understand. And before you hang up this phone, you are going to understand that I am alive despite it all, and then I’m going back to bed.
I thought a lot about work. I don’t buy into the whole “no one ever thought about work on their deathbed” thing. Work is what we do. It was my tether to information, social interaction, and purpose. A lot of those phone calls were with people I worked with. I have to admit that. Work was the next place to be a hero. During these days I was manic as mercury. Restless as a punk band. Sitting home I was bored, slow, and had no distractions. And I still felt like shit. I tried to go for little walks and couldn’t. My in-laws, bless them, did everything they could to keep the little elements that keep a house running, but I was nasty to them. They represented my illness and my incompetence. I wanted to take a drive. Tell stories with the fellas. Flirt with the girls. I didn’t want to hear another story about Croatian cuisine or another lecture about the benefits of exactly one inch of red wine a day.
The night sweats kept up during the week. I didn’t dare take my temperature. Wasn’t long before my day was structured and placed back in the more comfortable and purposeful role of patient. Check that, miracle patient. Future source of case studies, Oprah interviews, and speaking tours. All these needles, blood draws, pills, and doctor visits were just prelims. I was scheduled for a blood draw on April 8, and I showed up at the same place I was diagnosed 45 days earlier, forearms bared. At the walk-in clinic I waited in the rows of stiff-backed chairs trying to ignore Regis and Kathie Fucking Lee until they called my name. A middle-aged blonde-haired nurse, Cissy, called my name and took me into a different room that doubled as an infusion center. It had three huge dentist-looking chairs each with a different set of needles and paperwork on the armrest.
“Oh, you’re Dr. Fogarasi’s patient,” she said. “You’re that John Gaffney.”
Yes, I was.
“You’re in good hands,” she said.
I laid my right arm on the small side table. She tied off my upper arm and then when she spotted the scars from the PICC line there, she untied it. I tried to squeeze a rubber ball to pump the veins. Couldn’t. She switched the cinch to my left bicep. Got a little rise out of the interior vein at the crook of my forearm. Stuck it with the needle and tube that led to a glass vial. Nothing. She moved down two inches with the stick. Nothing.
“I hate doing this to you. I’m going to have to try going up the arm.”
Finally she hit inside the vein opposite my elbow. I saw the blood fill the tube and then the vial and felt a foreign detachment. This blood had betrayed me. You could have it. It was not part of me anymore. It was a fluid full of poisonous chemicals. It was not on my side and now it had the balls to not come when called.
The next day was my first doctor visit. Got there at 8 for an 8:30 appointment. Ready for the accolades. Yeah, I’m that John Gaffney. The office sat off a nice Connecticut country road, sharing this kind of faux Colonial office look with the physical therapy practice. When I walked in, an older gentleman sat in front of the sliding glass window of Connecticut Oncology Group holding his ribs like he’d been kicked.
“Are you OK?”
“I’m OK. You OK?”
Like a bomb went off. Like we all took shrapnel. The window slid open. He struggled off the chair and went to the window, where an unseen voice said:
“Oh, yes, Mr. Smithson, please come in.”
I approached the window. Pleasant middle-aged red-headed woman perked up.
“I’m John Gaffney.”
“Whose patient are you?”
“OK, please fill these out and give me your insurance card.”
“Ummm, I saw him in the hospital. I just got out of Middlesex.”
“OK, I still need you to fill this out. I’ll be with you as soon as you’re ready.”
How dare she. I took the damn clipboard. Filled out the form. It was OK. They just didn’t understand yet. I brought it back to the window and she led me into a small examining room. Take your shirt off and the doctor will be in to examine you in just a minute. I took my sweatshirt off. Waited about a minute before taking the T-shirt off. When I did I felt scrawny, cold, yellow, bald, and naked. There was a knock at the door and Mary, the woman who checked me in re-entered and stood in front of me, hands on hips.
“You’re John Gaffney.”
“We’ve certainly heard a lot about you.”
“I guess there was a lot to talk about.”
She reached up into a cabinet and pulled out a thin white blanket for me. Took my temperature and blood pressure. Normal. Fogarasi came in next. Shook my hand like we just met and sat on a stool in front of me with a sheet full of numbers rested on top of an inch-thick legal folder.
“Well. It’s good to see you here.”
“Did you think I’d never make it?”
“Well.” He shook his head. “There were times….”
My blood work, he said, was improving, but not close to healthy. “Any fevers?”
He rattled off some numbers from the blood work but I wasn’t paying attention. I just wanted to know that I was going home and not back to the hospital. Turned out I was going back anyway, for a bone marrow biopsy. Back to 5 North. I didn’t remember the first one, the one that came three days into the terror and came up 95 percent cancer. This one would be a quick outpatient procedure. Local anesthetic.
After all the laps I walked in that sick corridor of 5 North, pushing IV towers on both sides, a family member usually trailing, freezing my neutropenic ass off, I looked at this one as a victory lap. I shot out of that elevator Tuesday morning and headed straight to the nurse’s station. I saw Katie, and Thelma, and the other nurses I recognized but couldn’t remember the names. They all said a different version of the same thing: “I can’t believe you’re here. You were the sickest person I’ve ever seen.”
Then it was time for the “procedure.” My victory lap stopped at the procedure room, which was decidedly Kafkaesque. Gurneys everywhere. It was yellow, fluo- rescent, and concrete bunker design at its most authentic. Here to the left, an older woman lying face down heaving like she just got done with a tantrum and was at the “I … hope … you … get … hit … by… a … truck” phase. A nurse I had never met in my month of residence here led me to a gurney where I laid face down about three feet away from an older black man also face down. The nurse pulled up my shirt and asked me to pull my jeans down to my thighs. She laid a blanket over my bare ass and told me she was going to numb the area. I heard Fogarasi walk in behind her. “Is he ready?”
Imagine opening a big, cheap bottle of wine. You take the corkscrew and twist it in, turning and pushing until it stops. You pull, but it won’t budge. You put the bottle between your legs and strain against it. Finally it pops out, but only a core of the cork is removed. You put the bottle on the counter and go back in. Pull. You still don’t get the whole thing, so you have to work the corkscrew back and forth, and pull it few times to get the whole cork.
That’s what they did to my hip about three inches northeast of the crack of my ass. While it was going on I was moaning and crying. I didn’t visit the nurse’s station on the way out. The miracle patient’s ass had been violated. Back to sick, sore, and humiliated.
That weekend I watched Life as a House. Kevin Kline plays a character who is diagnosed with terminal brain cancer. He doesn’t tell his estranged family. But there’s a scene with his ex-wife where he looks back on the time he was really happy. He was playing in the waves with his six year old son in his arms. It’s his defining moment because he has identified the feeling and experience that made him feel most alive. So he seeks out the ocean. He seeks out the sun. He seeks out that son, who has now dyed and butchered his hair and pierced his body more than an armoire, and he takes him in. Protects him. Holds him. Tries to make him love him because that’s the experience that makes him fully alive.
“I’ve always thought of myself as a house,” Kline’s character tells his son. “I was always what I lived in. It didn’t need to be big. It didn’t need to be beautiful, it just needed to be mine. I became what I was meant to be. I built myself a life. I built myself a house … with every crash of every wave, I hear something now. I never listened before. I’m on the edge of a cliff, listening. I’m almost finished. If you were a house, Sam, this is where you would want to be built. On rock, facing the sea, listening…listening…”
The movie left me crying like a spanked toddler. It knocked something loose in my mind. Some kind of ego rattle. Like Kline’s character, my external structure had been torn down. My internal structure had been burned and buried. Cut loose. This sense I had of being special was not some kind of attention whoredom. I was finding a voice. I had something to say and a responsibility to say it. My life didn’t have to be a story of missed opportunities. It was in the process of becoming another story. I found what was missing in my consciousness and I was willing, as Joseph Campbell said, to stay with it.
End of Part One. To continue with Part Two, click here.
Image Credits: Photo courtesy of Shutterstock