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 20th 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
