2002

During the summer of 2002 if the phone rang while I was getting ready for work, that meant my mother was calling. If the phone rang while I was getting ready for work, that meant my mother was calling to tell me she needed to get fluids. If the phone rang while I was getting ready for work, that meant my mother was calling to tell me she needed to get fluids and was unable to drive. If the phone rang while I was getting ready for work, that meant my mother was calling to tell me she needed to get fluids and was unable to drive, so I had to take her.

After Memorial Day Weekend we were in somewhat of a holding pattern: there had been a setback, but nobody knew how serious. In the weeks in between the last holiday of spring and the first holiday of summer, the picture gradually—and inevitably—began coming into focus.

Actually, that is not accurate; it was the opposite. With the expectation, or hope of recovery (or stabilization), tunnel vision ensues and everything on the periphery is simply a distraction. It’s all a matter of scale and scope. Once you begin to lose control of the narrative, the image blurs and all the questions, conclusions and alternatives you did not need to (or did not let yourself) consider crash in from all corners. Then, anything might happen, and while it’s still a matter of scope and scale, now every possible outcome seems unacceptable.

The chemotherapy made her sick, but it also made her better. (Didn’t it?)

After Memorial Day she began feeling bad again, and this time we couldn’t blame it on the medicine. 

Suddenly, she could not hold anything down, and when even plain liquids were causing side effects, it was not possible to kid anyone about what was going on inside her.

We still did not know, and we did not need to know (yet), but the diarrhea and nausea became severe enough that chronic dehydration resulted.

The doctors were methodical, which was encouraging, at least initially. She is losing electrolytes, they said, so we simply infuse those fluids into her system. This, after all, was a miracle of modern medicine: we now had ways and means of providing what the body has trouble producing. Potassium and saline drips were prescribed to help restore the vital nutrients her body was expelling like an allergic reaction.

Solid meals and solid bowel movements became mementos from another time; another life. It was rapidly becoming a constant crisis, and we now spent more time shuttling her to and from treatments than we had during her regular chemo visits. That this coincided with the most intolerably hot days of summer seemed almost scripted. Nevertheless, when you see your mother shifting uncomfortably away from the blast of the car’s air conditioner even though it’s approaching triple-digits, you are officially at the point where medicine and miracles are the only hope you have left.

*** 

I’m standing in the middle of my bedroom, naked and soaking wet, holding the telephone. I am shivering, not because I’m cold but because I know it’s my mother on the other line and I know why she is calling.

If the phone rings when I’m getting ready for work that means my mother is calling me. And it always seems to be just as I’m stepping into the shower. I’ll hear the phone ring, go to voice mail, then ring again. That second call, I’ve learned, means it’s my mother and she is frantic to get in touch with me. It might also mean she has already attempted to get in touch with my father, or my sister, and each unanswered call is amping up her anxiety.

As summer progresses, a pattern has formed: each ring now elevates my own anxiety, turning the phone into both a transmitter and conductor of distress.

It was just before July 4, because that was the weekend I started to unravel. I stood in my bedroom, having sprinted to grab the phone before it stopped ringing. (After this I would begin bringing the phone into the bathroom with me.) Less than an hour later I was with my mother at the facility, in one of the private rooms they allow you to use for the treatments. 

It was around this time that I started having difficulty sitting through meetings at work. The small, windowless conference room began to feel like the stockade inside a submarine. The meeting would commence and someone would close the door (someone always closed the door) and I would immediately wish we had left it open.

The weekend of July 4 I sat in my living room, forgetting how to breathe. I found myself pacing around the condo, breaking into a full body sweat and eventually seeing no option but to get out; go outside into the soul-crushing humidity. I needed to feel real air and see the sun and the trees and, if necessary, collapse onto the grass and stare up at the sky. I was starting to crack. 

This is how it happens, I understood. When you get sick it’s seldom a real-time reaction; usually the infection is already inside and once your body begins to respond, the system succumbs. I was not unacquainted with anxiety but I’d been fortunate to have never experienced the symptoms of a panic attack. It was during these times that I could not help thinking the cancer, metastasizing inside my mother, was not satisfied only with her. Its tentacles were long and reached out in the darkness, slipping in between cars and houses, slithering over telephone lines and crouching inside my computer. The cancer was attacking my entire family, working its way into our heads so it could take over our bodies.

The room was cool and quiet and I held my mother’s hand as she snoozed. She was ceaselessly exhausted yet seldom able to sleep, which seemed crueler than even the diarrhea and dehydration. Everyone has heard how depriving a person of uninterrupted slumber is the most effective—and sadistic—form of torture; it is insulting to the point of overkill when a sick, scared patient is not able even to rest comfortably.

The fluids worked away, silently swimming from the bag into the tube that hung from her emaciated arm. The saline drips were innocuous in almost every way: without color or scent they looked like water, the source of life. This was the same solution they dispense before and after routine surgeries, a simple process with predictable results. Lately, it was not a simple matter of dehydration (itself never a simple matter); her body was dangerously low on potassium which meant a whole other series of solutions.

Once again I thought about machinery: we were back in unwelcome territory where medications had assumed a prominent role. Until now, they were always part of a process designed to improve, however slowly or unsatisfactorily. A witches’ brew of ingredients manufactured in laboratories, now replacing what her system lacked; no matter how much functionality they restored, they could not substitute what a body, when healthy, naturally produces. Now these fluids were not healing so much as supplanting, and in some subtle but insidious way they were turning her into something slightly less than human.

 I was scared of the fluids and I was becoming more frightened by this facility. I noticed the closed door (the privacy we would have killed for only last summer) and became cognizant of the nothingness surrounding me: They clean and anesthetize this place but they cannot keep it out; they are only human and they cannot disguise it, it happens no matter what we do to prevent it and ignore it.

My mother abruptly sat up and vomited on herself. Before I could react she retched a second time, sending a spray of fake bodily fluids onto the sheets: the color was orange and the smell was metallic. The look on her face shifted quickly from surprise to panic, and for several seconds my mind spun in a frenzy of confusion, disgust and alarm. The smell was immediate and unprecedented: it was the scent of science and the 20^th Century, filtered through the debilitated system of a woman drowning in empty air and excruciating dread. 

(Keep calm, keep it together.)

She threw up again, this time on the floor, splashing up on my feet.

(Oh my God, is she dying?)

Everything happened very quickly and I’ll forgive myself if I can’t recall what I said, how much I said, or if either of us said anything at all. I could have screamed or wept, or punched the wall or jumped out the window that was not there, but I forced myself to stay composed. I was not okay and I knew it. I was more terrified than I’d ever been in my life. 

“I think you better call your father,” she said.

When you have helped someone through a cycle of cancer you adapt, however begrudgingly, to the sights and sounds and smells. And it’s one thing to deal with bodily secretions, no matter how malodorous or messy; any parent or even anyone who has owned a pet becomes at least partially desensitized—it’s an equal measure of experience, acceptance and affection. But chemicals are another matter altogether. What erupted from inside my mother was otherworldly and unnatural, like robot blood or the sweat from a machine. It had that synthetic aroma that I recognized, but also something else, something alien yet familiar. It had a confident odor, as though the transmission from cold storage to overheated internal organs created some sort of grotesque entity that wanted out, that wanted to be exposed, to spread out and get inside someone else. (It is not just the fluids; it is her cancer—that is the cancer coming out from inside her. It’s finally here, and it’s getting on you…)

 (Go get the doctor.)

I found a nurse who put a call in for the doctor. I had my own call to make, so I headed downstairs. This was near the end of the payphone era, and the twin machines smiled across the hall like a talk show host: Pick a phone, either phone; heads we win, tails you lose! I walked over and paid a quarter to share bad news. I told my father what had happened. I told him his wife wanted him here. I told him I loved him. I told myself to hold it together, for my mother’s sake. For my sake.

This is where, in the movies, the character stops and takes a long, searching gaze into his eyes reflecting back in the polished silver; maybe there is an epiphany, maybe he cries, maybe a beautiful nurse comes and rescues him. Regardless, the music swells and everyone knows something significant is happening. In real life, at a moment like this, you may catch a quick glance at yourself but you look away as fast as you can, afraid for what you might see looking back at you. 

I needed to get back upstairs but I needed fresh air first; I needed to feel the heat caused by summer air and not my nervous system, burning itself inside out. I stepped outside of the dim lobby and the heat swirled up from the concrete and enveloped me from all sides. If this were a movie, I would question God or curse the cruelty of life or have a Hamlet moment and soliloquize about the cosmic cards we are laughingly dealt. You don’t, in actuality, do any of these things. You can’t; you are too busy bracing yourself as you hurtle into a black hole that swallows each thought before you can think it. You spin through space and there is no escape because it’s inner space: we reside in our minds and once all defenses and distractions have been dissolved you speed more deeply into yourself. When you finally  fall it’s not over or sideways, it’s further in, and what is most frightening is not knowing how far we can go. We can scarcely fathom and we can hardly stand how far inside ourselves we can get…

 (Get back upstairs.)

This was the worst day; this was the hardest one yet and as I got inside that elevator I knew it was going to get harder, that this might be merely the beginning of days I could not have imagined or possibly prepared for. I looked at my hands that were connected to arms that hung from shoulders that separated my back from my head, and I wondered what part of me had any hope of explaining, or assisting or ameliorating any part of what lay ahead. It took the eyewitness of unreal things to fully grasp how real it had gotten, and how unreal it was likely to become. The only thing I had to fall back on was the fact that I didn’t have any alternatives; I didn’t have any other choice. I was scared to open the door, horrified by what I might see.

(How can I go back into that room?)

I thought, once again, about machinery and what our bodies did; what my body was doing to me. Up until now, in my own life and throughout my mother’s experience, I had a calm understanding that I could take care of myself. I could handle whatever got thrown at me and face it without fear, because there was nothing to be afraid of. But it hadn’t occurred to me that this did not apply if confronted by the mortality of the person I loved best in the world. Presented with this, and confronted by the helplessness of having nothing to offer except kind words and assistance, I felt the fear (or was it the cancer itself?) settling inside me. The fear, like cancer, metastasizing through my family, its tentacles reaching out to ensnare each of us if it could. 

(What am I going to see when I open that door?)

As I thought these thoughts my feet, connected to my legs that took orders from my brain, continued to move forward. I kept walking and finally focused on the only thing I could: one foot in front of the other, one step closer to that room. When I got there I opened the door and went back into the room. I wasn’t going to see anything I didn’t expect to see, because now I expected to see things I had never seen or imagined. My eyes that were connected to my face would tell my mind what to tell my mouth and I would say the things I had to say, those things I had never said or imagined saying. I would do this because I had to and because I had no choice. I would do it for my mother’s sake and I would do it for my own sake.

*Excerpted from a work-in-progress entitled Please Talk About Me When I’m Gone

2001

The sights and smells, never welcome, quickly become recurring, then established. Once you’ve patrolled the hallways of a recovery ward, or helped your mother to and from the bathroom when she can hardly walk—or stand—or changed her bandage after surgery (and seen the scar, like a breathing fissure that might open up and suck you in if you looked too long), you become more than a little immune to the fluids and gases the body emits, the peculiar emanations that take on an artificial tinge in the too-cool air inside a hospital room.

You become accustomed to things you could not imagine for the simplest reasons: you have no choice. You slowly become attuned to the sights and smells of cancer. These are not confined to the places you go or the patients you help protect, they include what you detect around your house and inside yourself. You become philosophical by default, and find yourself thinking about how things used to be: a generation before, a century before, a millennium ago. You contemplate operations without novocaine, or a time when operations were not possible or even considered; if you suffered certain symptoms you became expendable.

Natural law, which only became intolerable once our capacity to relieve—and understand—pain evolved with our brains and our contraptions. And you get perspective: it’s better now than it’s ever been and that’s all anyone living in the moment can reasonably ask for. This is progress: people used to die at home, because they had to, because they had no say in the matter. Now, there are doctors who have been trained to treat you and there are few symptoms they can’t find in an explanation for.

We came to treat the body more like a machine than a soul covered with skin, and this is what saved us. As soon as we stopped soliciting the sky for answers—or assigning divine agents the acclaim for our survival, we started to consider the connected parts that make us all alike. We began to look inside, figuratively and then literally, and this is how the art of medicine was developed, and then refined to the point of near perfection. It is a tribute to our instinctual insistence on improvement that we won’t tolerate ceaseless obstructions if we can help it. Being human, we can contemplate our flaws and the ways to improve; we are also capable of acknowledging how far from the ideal we fall. In other words, we control what we can, and when we are unable to exert our will we make war (or peace) in our minds. Mind over matter is what we say when we can’t say anything else; it is intended to inspire but it also is an illusion. Trying to control our minds is another matter altogether.

And sometimes it doesn’t make a difference how compelling or rational your thoughts might be. Sometimes having perspective is not good enough when you are obliged to watch someone you love struggle with pain and fear—the two things that our minds and machines ultimately are powerless to protect us from.

You may find yourself an adult, keeping watch over a grown child in a hospital room, who licks her dry and cracked lips. She would be salivating if she had any spit, craving the simple, now sublime pleasure of an ice chip. An ice chip that she is not allowed to have—even this paltry, pathetic pleasure must be denied, for her own sake.

And you might think: Is this as far as we’ve come? Someday, hopefully in the foreseeable future, we’ll look back on these ordeals and find them cruel yet amusing. After a procedure that removes a portion of your guts, where you get stapled together like a flesh textbook, after having a vacuum tube snaked through your nostrils to suction out the leftover mess in your stomach; after all this and being compelled to find solace with a prognosis of maybe, all you want, all you can imagine (all you are reduced to?) is the intolerable craving for a tiny chunk of frozen water. And you aren’t allowed to have it.

We worked shifts to ensure she was never alone. Even when she was asleep. Especially when she was asleep, because that was when the staff expected you to sleep, and if you couldn’t, you were on your own. (This is not an indictment of the nurses, already overworked and tasked with too many patients to keep up with even in ideal circumstances—and conditions in any hospital practically by default, are never ideal.)

The anesthesia mixed with the meds would cause a curious fugue state which made her at once childlike yet frail like an older woman. Under almost any other circumstances this could have been somewhat cute and amusing, but there is nothing cute or amusing about watching your mother toss and turn, speaking to people who are not there and seeing things no one else can see. After a while, as you sit with her in the darkness, it occurs to you that she may know exactly who she is seeing and what she is saying.

***

She looked down at her mother.

Is this what you will be like? Will you appear to me as you did on my wedding day? Will I weep again with joy when you smile at me? Will our loved ones be gathered around us, making that moment? Will you be older? Will you be what you are right now, this husk of bones? (No!) Will you somehow be all of these things, as you are even now in my mind? How will we give and receive love? Will I recognize you at all?

She hears the priest’s voice, speaking at her daughter’s baptism. We are all equals in the eyes of God. Yes. We are all created in the image of our Father. No. I want to know you and recognize you. I don’t want to forget these things.

She reaches down for her rosary beads. She looks back at her mother, supine and stationary. Suddenly the practical, practiced faith and belief in the goodness of human beings which has stood her through every test, her love a calming salve against the iniquities and injustices of this life, the solicitudes of motherhood, the faith which has made her life meaningful, the conviction that she understood what caring entailed, is revealing itself, abandoning her in the eyes of a life slipping away. In life it comforted, giving courage and belief, but now, for the first time it occurs to her that it will not be enough because it is all for naught if there is nothing else. Anything but nothingness, she thinks. Just darkness and nothingness, not that…

Was she trying to move?

She watches her mother’s eyes become still and focused. She shifts slightly, a shadow beneath the sagging sheets.

Was she trying to speak? Was she praying?

“We’re here…can you see us?”

Her lips moved but no sound came out.

She looks eagerly at her mother’s face, as though in that moment it might still be possible to will her to rise. To help her stand beside the bed so she could tell them it would be alright, as she always had. To help them believe.

Then, suddenly, she realizes: she is waiting for us.

“It’s okay,” her father is saying. “We’re okay, you can go…”

Her mother opens her eyes and looks up, as if trying to communicate something she was already seeing. The eyes close, open and then—still.

She looks into those eyes and then, in spite of herself, she finds she is looking upward, expecting to see her mother. Not the pale, lifeless shell on the bed, the real presence, ascending up and out of the room, a shimmering trail reflected in the sun’s light like stained glass, consoling them all one last time.

*excerpted from a work-in-progress entitled Please Talk About Me When I’m Gone

2000

The hardcore chemotherapy commenced just as the sweltering summer of 2000 settled into its sustained, apathetic groove.

Our family took turns getting my mother to her appointments, and while none of those occasions were pleasant, they were, for the most part, predictable. We knew what to expect, she knew what to expect, and we all regarded this series of treatments as a high percentage strategy for survival. There was no creeping pessimism or confusion: the stakes were clear and we all had reason to imagine things might be better in the not-distant future.

As such, we adapted to our new routines and it wasn’t so much a matter of who did what, it was who could do whatever, whenever. That summer we were still on offense; we had hope to spare and the unified sense of purpose any family requires to make it through an ordeal. It was, in short, almost businesslike, each of us doing what needed to be done. Since my mother was doing all the dirty and difficult work, our mission was to elevate her spirits any way we could.

We had a lot going for us: the surgery in March had been successful and this course of chemotherapy—aggressive and therefore excruciating—was undertaken with an expectation of winning the battle, not postponing or prolonging it. We had my sister’s children to provide amusement and distraction. We were still locked in on the present and not overly obsessed with the future; we had absorbed the various prognoses and possibilities and were on the same page about how to proceed.

***

The patients sit in a large room, stationed in reclining chairs and hooked up to machines slow-dripping destructive fluids into their bodies. The idea being: you fight fire with fire, don’t negotiate with terrorists, break a few eggs to make an omelet and above all, never let on how worried you actually were.

The woman always brought a pile of magazines with her. Books were too difficult these days; it was cumbersome to read line after line and keep track of page after page. After a while it made you aware that you were concentrating, and the only way to do anything that requires concentration is to forget you are capable of doing anything else. Magazines were good, since pictures broke up the action and helped the pages turn more quickly and easily.

Her son encouraged her to listen to music, but she did not like having headphones on in a public place; it felt as though she might miss something. Even though the doctors made themselves scarce here, just like at the hospital, you never knew when one might appear, so you had to be prepared. Music was capable of pleasant distraction, but she needed to be in the right place and the proper state of mind. She still could not believe her son listened to music at all times and claimed he needed music on in order to fall asleep. It was from college, he explained. Having roommates meant you either adapted to their schedules, or you trained yourself to study, relax and even sleep with the accompaniment of music.

He made her tapes that he promised would help, but she could not listen to them here. Rather than soothing her, they caused her to consider the things she would rather ignore. For instance, the tubes sticking out of her body, the hypnotic pings from the plastic bag, the faded blue veins in both arms, the scuff marks on the tiled floor, the scattered chairs spread strategically around the room, the various brochures strewn across the tables, the other patients (of all ages, of course, but not children, thank God; she would not be able to handle that), the familiar looks on all their faces, even the ones fortunate enough to be able to sleep.

She could not sleep. Her anxiety was mostly under control, but not enough to help her forget where she was (even if she wanted to) and certainly not enough to enable her to sleep. She did not savor any of this, but it was tolerable thus far; she accepted that this was what it would take to ensure she could stay away from surgeries and check-ups and chemo infusions. Hopefully. Still, she envied the people who were able to silence all thoughts and nap until it was time to leave. She did notice that most of them were unaccompanied. Her husband and son stayed with her when they could, but they also had their jobs to get back to. Her daughter stayed sometimes, but it was always difficult with the young children.

So she brought her magazines and she welcomed the company of her family whenever they were available. But mostly these hours were spent alone with her thoughts, without music and without the escape of sleep.

*excerpted from a work-in-progress entitled Please Talk About Me When I’m Gone

1997

When you are young or healthy enough to not know better, or need to know any differently, you won’t spend a great deal of time pondering the ways our bodies work. We learn in school that our bodies are like machines (or, if religion gets there first, we are instructed that our bodies are miracles, at once made in God’s image and the perfect alchemy of His divine experiment, begun in the Garden of Eden).

When the body is unencumbered by illness or self-inflicted duress, it works best when it is inconspicuous. We don’t necessarily notice when we breathe, swallow, sweat, absorb or any of the other invisible responses that keep the organs thriving and the synapses firing.

When we are sick everything changes. So many of these considerations come into focus and we appreciate what our bodies allow us to take for granted. When we get fevers or infections, we can acknowledge—and appreciate—that the aches and chills, even the coughing and the phlegm, are evidence of our systems in action, combating the viruses and bacteria that might otherwise incapacitate us. We may marvel at the way a body can cure itself: illness runs its course, scars heal, skin grows and symptoms dissipate. It is possible that we never feel healthier than when we are recovering from a minor ailment.

With a malignant illness, like cancer, it obliges a humbled concession of the limitations of any single system’s resources. When the body, invaded by an opportunistic cell, starts to turn against itself, we look to medicine—and the professionals paid to dispense it—because we have few other options. Anyone with a sense of history has the perspective necessary to perceive the ways medicine has enhanced our lives.

At one point in our human development we considered bad health or sickness an infestation of evil spirits; later we used remedies such as leeches and burning glass to drain or expel malevolent fluids. And yet, it inevitably seems more than a little antiquated, even barbaric, the way we poison our bodies to thwart the cancer: chemotherapy can seem like the modern application of a medieval concept. Our method of making the body a less hospitable host and rendering it almost uninhabitable can cause one to contemplate the progress we’ve made on the continuum of disease and mortality.

If you are not prepared for what cancer can do, this is a blessing of sorts. Being unprepared means you have not previously had occasion to think deeply about the disease. The initiation causes you to look at things differently or, you never look at the world, your loved ones or yourself quite the same way.

***

Until he passed away shortly before I became a teenager, I would see my mother’s grandfather, Nonno, every few years. His wife had died young, so he lived the last thirty years of his life alone. In truth, I remember little except impressions and the stories others have told about him. My recollection is that he was fairly short, had pleasantly disheveled white hair and still spoke with a strong Italian accent. He kept chickens in his backyard and I would enjoy watching them clucking in their wooden cages. Most of all, I recall that his house smelled like piss.

He was diagnosed with colon cancer in his ‘50s and, almost miraculously for that time, the surgery was successful. As a result, he was obliged to wear a colostomy bag and his diet, for the last few decades, existed almost entirely of cereal and crackers. Looking back I can better appreciate what a tough, self-sufficient man he was. He was in poor enough health that he could occasionally have trouble making it to the bathroom. As a result, he simply filled up half-gallon milk cartons and would leave them around the house, mostly in his bedroom.

I was too young to process this on any sort of rational level, but old enough to find it unsettling, and even a little frightening. What I could not possibly appreciate, then, was how independent and resourceful he managed to be. I like to think of him living out his years, comparatively content to exist on his own terms, at least as much as he was capable of doing.

All I knew, circa 1979, was that I was going to live forever. I knew nothing of cancer, or old age, infirmity or isolation. I knew that piss smelled unpleasant, especially when it had been sitting in a semi-open container, neglected inside a warm room within a house without air conditioning toward the end of summer.

I did not know much in 1979, but most of all I did not know all that I did not know, which is the one irretrievable condition of youth. I knew some things, like the fact that my backyard was Fenway and Yaz never struck out; I knew about block parties, blue gills, burned marshmallows, mosquitoes and putrid bug repellant that did not kill anything but made me stronger. I knew I was going to live forever and no one close to me was close to dying either. And then, in 1980, my grandmother was diagnosed with cancer.

*excerpted from a work-in-progress entitled Please Talk About Me When I’m Gone