On the phone, at a gas station, in our dreams
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How long will it be, after you die, before the last living person who knew you also dies? And when there is no one left living who remembers you, what will your life mean then, after all of the noise?
Until recently, I had always imagined I would die in a plane crash. Perhaps it would happen on a vacation flight to Palm Springs, because upon boarding I failed to touch with both hands each side of the plane’s entryway to appease the gods. I’d imagine the plane starting to shake ferociously — bad airline food tumbling in all directions, passengers who aren’t buckled in thrown into the ceiling and then back down, backs breaking, and worst of all, that moment of realization — “We are going to die” — as I exchange a glance with my husband, Tom, and see my own terror mirrored in his eyes; and within a moment, one wing has broken off, then the other, and now swords of plane are hurtling through the cabin, and I am struck again and again, and still I don’t lose consciousness as the frigid air swoops up and around and through, its deafening roar underscored by the dissonance of thuds and cracks and shrieks, until that which remains of me, inside my head, perceives blackly in that final moment the unstoppable.
It’s a melodramatic vision, I know, but that’s how I always thought it would happen, my death.
But not anymore.
And all because catastrophe knocked on my door while I was visiting my longtime friend Carol Lee. Carol and I had met when I had first come to Dayton, Ohio, and I’d been lucky enough to direct her in a production of Arthur Kopit’s Wings, a play about language and death. Never once leaving the gloomy, shrouded stage, Carol had given a tour-de-force performance as Emily, an aged daredevil who’d performed stunts on the wings of biplanes in flight. When Emily has a stroke and descends into poetic gibberish, her words fly off into oblivion as her body spectacularly fails. And as a person with Tourette’s syndrome, which showed itself in some very mild physical tics, I was interested in all failures of the body. Through our collaboration on the production, Carol and I had bonded forever: perhaps because my father had died of a stroke and I was directing Carol similarly to die night after night, or perhaps simply because Carol — who never mentioned my Tourette’s — was the most loyal friend you could imagine, always supporting you with her generosity and her authentic smile.
There is the family you’re born with, and then there’s the family you choose. And so my choice of Carol was especially important as I was making my way as a young college professor of film, and coming out as a gay man. The deaths of my parents in my early twenties had freed me to remove the mask of the good son and reveal my true face, but my working-class Italian relatives back in Cleveland had largely recoiled in horror from the apparently monstrous homosexual me. And so, for many years — at least until Oprah indoctrinated many in my family with her progressive vision — I was banished: no more Thanksgiving dinners, no more coming home for Christmas, no more watching my young cousins grow up. Unlike the members of the family I’d been born into, Carol was accepting and matter-of-fact about my sexuality. And when I was fortunate enough to find Tom and he and I moved in together, Carol loved him, too, without question or reservation, because I did. With Carol, people were accepted as is. And for more than twenty years, Tom and I loved Carol for everything that she was: a General Motors secretary and a fabulous actress and person, the Auntie Mame of the suburbs.
Yet now Carol was also someone who was dying: from a melanoma she had purposely chosen not to treat, because she had also been diagnosed with Alzheimer’s. Faced with the decision of which to lose first, her body or her mind, Carol had chosen her body. It was a heroic decision — because her Alzheimer’s was still in an early stage, and her cancer would choke her painfully until she could neither speak nor breathe.
And so Tom and I were visiting her, potentially for the last time. After showing us the tumors protruding from her chest, Carol ushered us into the living room and began giving us her possessions. At the bookcase, with her weakened arms, she swept her entire collection of scripts into a huge box: a lifetime of performances, instantly liquidated. “Take them all,” she said, and so we took them. Then she led us back into the kitchen, where the air was now acrid with the smell of the bacon grease her daughter was frying into their lunchtime spaghetti sauce. “Tomorrow we’re driving to Florida,” said Carol, “for the end. And I don’t expect to be back, so here.” And she flung open her freezer. “Take these frozen Tyson chickens. Here are some wings. You like wings? And here are some breasts.” She threw them in a bag. “You like liver? Here, take it. Take them. You want my ice cream?” The house was emptying out: walls bare, bookcases bare, refrigerator bare, Carol, too, disappearing, cell by cell, memories shedding, body and mind disintegrating. And then Tom and I each kissed her, and she walked us to the door with our bounty. As we pulled out of the driveway, she waved to us from her stoop, standing exactly two feet downstage center from her doorway, her fingers curved at the most expressive angle, just so.
And it was at that precise moment, as I left carrying frozen chicken parts and the detritus of Carol’s life, that I first felt some pain while breathing.
It was just a bit of pressure, really, not much more, hardly worth noticing, embarrassing even to mention to my doctor. And at first he, too, thought it was nothing, maybe a muscle spasm, and he gave me something for it. But then, darkly, when the pain continued, each development brought some new fear.
“Perhaps we should take a chest X-ray, yes?”
Later, the X-ray in hand: “Oh . . .”
“That doesn’t necessarily mean something bad, does it?”
“It’s very large. But a CT scan would . . .”
And then, scan in hand: “Well, take your Palm Springs vacation if you want, but I’d talk to the surgeon first. Absolutely. So shall I set it up? Yes?”
“Yes.” God. No.
And then, while looking with the surgeon at a gray shape that was not supposed to be there on the scan, a ghost that looked bigger than my heart: “Of course it’s most likely something benign, like a cyst, but still, I can schedule you for the day after tomorrow, shall we do that?”
And yes, I know it is really too much (though sometimes life is too much), but when I awoke from my open-heart surgery to discover that my tumor was huge and cancerous and that half of my heart lining had been ripped from my heart along with the tumor, the war to remove Saddam Hussein had just begun, and someone had tuned the television in my intensive-care room to shock and awe, and as thousands of tons of bombs were bursting over Baghdad, lighting the Iraqi skies a putrid, surveillance green, I was shrieking in pain because the morphine was failing to work, and I was feeling that I had been blown apart like a casualty of war; that scientific instruments of torture had been used with clinical precision to demolish me; and that doubtless I would not live — but maybe I did not want to live in such a world as this, in such a time as this.
Can I say here (without sounding too pretentious) that destiny has a wicked sense of humor, and that life, so filled with irony, is not a series of ors but a series of ands? Such as “Carol Lee was disappearing into Alzheimer’s, and Carol Lee was dying of melanoma.” Such as “I was visiting my friend who was growing a cancer, and I was unknowingly growing a cancer of my own.” And does it sound crazy to admit that, though my cancer was a shock, it was not entirely a surprise? The superstitious nature of my peasant ancestors was hiding inside me as surely as this tumor, and my previous year at the university had been too successful, culminating in my winning a teaching award and giving a commencement address to fourteen thousand people. Even as I was giving that speech, I was thinking: How long before I discover some horrible cancer that will balance out my good fortune? Of course I had dismissed those fears as irrational, but perhaps they were prescient instead. Could it be that I had subconsciously felt my tumor?
In the hospital, I wondered: what did it mean that my mother — whom I resemble — had also died of cancer? I stopped short: Also? Had I meant in addition to me? Or in addition to my Aunt Frannie, who had died of cancer, too, just within the past year, and before her my Uncle Carlo of cancer, and my Uncle Vinnie and Uncle Paulie of cancer? And of course, there was Carol. . . . Recognize the preposterous: my mother’s cancer, Carol Lee’s cancer, this cancer.
What I had grown inside my body was an aggressive cancer of the thymus gland — a thymoma. It’s darkly notable that thymoma is such a beautiful word, really, coming from the Greek thymus, that mysterious fountainhead in the body where, according to the ancients, our deepest passions and feelings are born. My thymus, far from atrophying as it does in most adults, had instead grown crazily, bursting its casing, enlarging, ludicrously, to the size and shape of a sandwich. (A sandwich eating me?) It was invading my heart and one phrenic nerve and seemed poised to march into my lungs and lymph like a colonizing force of inexorable power. “Chuck and his enthusiasms!” my friend Susan used to say long ago with a certain awe and derision. Now it was as if my enthusiasms were growing beyond my control, killing me. I found myself repeating the word thymus in an attempt to drain it of its power: thymus, thymus, thymusthymusthymus.
After the surgery, I fell into a profound depression, the likes of which I had never known. Was my passion for life now gone, ripped out with the tumor? (I have since learned that depression is not uncommon after open-heart surgery.) Unbelievably, my cancer was so rare that even my oncologist did not immediately know what to make of it. The first time he stopped by my room, my bed was surrounded by visitors who showed not the slightest inclination to leave, despite his long, weary look at them. I was too depressed and lethargic to insist, even after my oncologist started asking me personal questions about my medical history. After a few minutes, he gave my visitors another pointed look, then said to me quietly, visibly stunned by their obliviousness, “Who are all these people?” I didn’t know how to answer, and in my weak voice I started to provide résumés and life stories. I was thankful when he interrupted me and ordered everybody out before continuing with his questions.
“Have you ever been radiated in the neck?”
“Have you ever gone anyplace where you might have been inadvertently exposed to radiation?”
“Were you exposed to radiation as a child as part of a tonsillitis treatment?”
“No, I don’t think so. . . . But I did have my tonsils out.”
And then he breathed out slowly. “This is a very rare cancer. I need to wait for the path report before I say more.”
“ ‘Path’? What’s a path?”
He smiled almost tenderly. “Pathology. To see what those cells are.”
The next time my oncologist stopped by, my room was again filled with visitors, including some I really wished hadn’t come. Not taking any chances, he immediately asked them to leave. Tom — who had barely left my bedside in days — had just gone to the cafeteria. The pathology report had confirmed and clarified the diagnosis, but my oncologist was hesitant to offer me any odds of survival, because the information in the one article he had consulted so far was not at all definitive. “You have to understand,” he said, “that the data is old, and technology today is more advanced.” When I insisted on a prediction, he offered me a shockingly small five-year survival rate, and then, when he saw my face, immediately doubled it. “But I would go with the higher number myself.”
After he’d left, my visitors returned. One professional colleague and friend shushed the others and said, “Chuck just found out his prognosis, and we’re about to hear the news.”
That this woman genuinely cared about me did not make the moment any less horrible. Standing around the bed, my visitors looked down at me expectantly, an audience of empathetic ghouls, and I felt as if I were preparing to recite lines onstage. (Could I be like Carol Lee’s Emily in Wings and face death with dignity before flying off to the great beyond?) At that moment, still in considerable pain, as psychologically naked as I’ve ever been in my life, I had no ego left to protect my privacy, to ask my visitors to leave, to not share the news, to say simply: No. All I wanted was for Tom to make his way back from the cafeteria so I could hold him and find some way to go back in time to before.
Radiation could help in the aftermath, said the oncologist, but the surgeon, disapproving, said that radiation could damage my heart and cause a heart attack. Later, a nurse suggested encouragingly that if my heart were damaged by the radiation, there was always the possibility of a heart transplant. It was all too much. For days in the hospital, as I wrestled with the fears of residual microscopic cancer cells growing inside me, of radiation hardening my heart, of my wounded body lying in yet another antiseptic operating room with my heart removed and held aloft in some surgeon’s gloved hand, I found myself wanting to scream. But I had always been a good boy, and good boys don’t scream.
I came to understand that most visitors fall into one of two categories: those who pulverize you, and those who offer you hope. It’s hard to predict who will be which kind, so when people call to ask if you want them to visit, you truly don’t know what to say. Some members of my family (pulverizing, though well-intentioned) drove down from Cleveland, including my Aunt Aggie, who had so disapproved of my being gay that she had once written me, “You are worthy of death,” and then virtually stopped speaking to me so as not inadvertently to cause God to think she approved of me. Aunt Aggie walked arthritically into my hospital room, looking younger than I could possibly have imagined, and touched my hand as if this would be the last time she would see me alive. Did she still think that I deserved death? What injustice there is in the world, I thought ungenerously, if I have to die before she does.
Aunt Aggie, who had married into the family and seen her husband, Vinnie, die of cancer, as well as his siblings, my mother and my Aunt Frannie, now seemed to know with every fiber of her being that I was a goner. “I never realized you looked so much like your dad,” said Aunt Aggie, trying not to cry, and I could tell that she was adding this day to her memory bank under “Trials of This Earth: Final Days with Family Members.” And yet, despite her homophobia and difficulty walking, my Aunt Aggie had come, and I could still see in her face the young housewife who used to make pecan pies for her two boys and me and drive us to Putt-Putt.
Her married sons, my cousins, also made the three-and-a-half-hour drive to visit me. John, whom I’d always been close to, mainly stood silent, wearing gloom like the black suit I’d last seen him wear to Aunt Frannie’s funeral. David, the other cousin, talked about our missed opportunities: “I’m sorry we lost touch for so many years.” And then one of us, I can’t remember who, said what David and I were both thinking:
“Maybe we could play tennis again sometime, the way we used to when we were in high school?”
And I remembered with such longing how we used to drive around on balmy evenings from one park to another until we found an open court, and then play tennis for hours, the entire summer of camaraderie unfurled to us without apparent end. And our bodies were so much younger then!
No. No longer.
Then tears came from David, who turned away from me, then withdrew. It was as if I were already dead.
There, in my hospital bed, during the darkest nights, when all the visitors were gone, the ubiquitous bombs falling on Iraq as my music, I started marking off all the things I would never do: take another vacation to Palm Springs, retire, finish my novel, make some indelible mark in the world, love Tom with the fervor that he deserved. I also planned my funeral service, even going so far as to pick the eulogist and the musical selections: The last movement of Messiaen’s Quartet for the End of Time would be spectacular, but how would it play? Better to balance it with the theme from Somewhere in Time. And maybe a Beatles song, too: “In My Life.” That would be nice.
I got out of the hospital faster than anyone had thought I would, because basically, except for the malignancy that could still kill me, I was a healthy guy. When I got home, I was too weak to do anything but lie in the upstairs bedroom and stare at the ceiling. Within an hour of my return, my friend Ben — who had just learned I was sick and had gone to the hospital and discovered what he thought was the good news of my release — came to visit me and discovered the horrible news of my diagnosis. In my darkened room, where fear and dread seemed almost animate, there was silence and slowness; and then, unexpectedly, Ben kissed me on the forehead with such tenderness that I will remember that kiss forever. I felt as if I were in an Ingmar Bergman film, though with no audience watching, and so my little piece of space in the universe and my little piece of time in eternity seemed even more negligible, surrounded by gaping black. I listened to Ben’s footsteps as he walked back down the stairs — one more of what I feared would be many such partings to come, until my life would be totally disappeared from me. I know that sounds odd, but that’s how I felt it. Alone again in my bedroom, I thought of my Aunt Frannie, who had recently died at home. And I thought, too, of Carol Lee and wondered if she was still alive, staring at a ceiling above her bed in Florida.
As the days went on, Tom cooked my favorite foods to strengthen me, but his attempts were confounded by the side effects of the surgery: night sweats, pain, temperature spikes, insomnia, depression. Occasionally I would hear Tom’s wracking sobs downstairs, which would leave me feeling totally enervated, ready to leave this world so that he could go on to something cheerier. Sometimes, sitting at the dining-room table, I would shake my head, still struggling to accept the enormity of the news.
“What is it?” Tom would ask. “What are you thinking?”
“Tell me, Pupper. Are you OK?”
For days I couldn’t tell him the truth: that I was deciding which cemetery to be buried in, or compiling a mental list of financial arrangements, or concocting a plan to assure his future happiness without me, even choosing a replacement husband for him from among our friends.
Roger, who might have been a candidate, had been supportive before the surgery by helping Tom give me a Reiki massage, and after the surgery by bringing me a stack of paperbacks with titles like Cancer Talk, Survivor, and The Human Side of Cancer. “You’ll read them when you’re ready,” he said.
One afternoon Roger volunteered to make dinner for us at our home while Tom and I were at the hospital collecting the records relating to my surgery. (My first excursion out of the house!) The trip took longer than we thought, and I was exhausted, even though all I had done was wait in the car. When Tom and I returned home, we discovered a teary Roger drunk and literally under the dining-room table. He had consumed a fifth of Bombay Sapphire gin that we had forgotten we owned.
“Do you know what a nice dog you have?” Roger slurred from the carpet. Our yellow Lab Howard was wagging his tail and dutifully intertwined with Roger on the floor. Howard raised his head to us in greeting, but held his position. Howard was working, trying to make Roger feel better. For at least an hour we begged Roger to get up, but he just repeated over and over, “Do you know how good your dog is? Do you know how lucky you are to have such a nice dog?” Then, with Howard’s nostrils quivering to the scents of alcohol and tears, Roger started a fresh round of uncontrollable sobbing into the dog’s yellow fur. “Good dog. Can I take him home? I’m going to take him.”
For the last fifteen years, Roger had lived alone and worked as an electrician, with no health insurance and few friends. Now in his forties, Roger was struggling to return to school after having moved his ill parents out of their home in Missouri and into his. When Roger finally picked himself up from the carpet and collapsed facedown onto our couch instead, Tom and I noticed the blinking red light of our answering machine: twelve messages from friends who had called — while Roger was cooking — to wish us well and get the latest news.
“Your dinner’s ready,” said Roger, “so leave me alone, stop, leave me. Do you know how lucky you are? Lucky!”
Later that evening, somewhat sober but not chastened, Roger accused me of failing to share with him every detail of every day’s cancer news. At one point he said to me angrily, “Not everything is about your cancer!”
And yet in the first weeks after my diagnosis, it was hard not to be morbidly obsessive and see my cancer everywhere. My interior monologue was constant and uncontrollable: My bedsheets are soaking, and I have cancer. The mailman is coming up our path, and I have cancer. It’s time to go back to bed, to get up, to eat an apple, and I have cancer.
And there was shame, too, as if the cancer were somehow my fault.
Ten days after I had been released from the hospital, I discovered that Carol had returned from Florida and was still holding on, though barely. Everyone had decided not to tell her about my illness, to spare her already overburdened psyche. And so Tom and I — in the hours before she died at her home — were able to visit her again, although it was profoundly wrenching, because looking into Carol’s eyes, I now saw mostly my own imminent future, and on that gloomy day I had to fake an optimistic belief in the eternal. “You’re doing a great job, Carol,” I said. “So ‘go out on wings!’ ” I was quoting her own greatest performance in Wings and feeling like a charlatan, because I didn’t believe a word of it. Even today I replay that last, sad visit and annotate the ironies. Please, I thought then, if it comes to me soon — death — don’t let it come in a dreary back bedroom, in a rented hospital bed.
While I’d been in the hospital, Julia, a friend who was making a TV documentary about kids with cancer, had hired a researcher to pull medical-journal articles for me, since my cancer was so rare. All the terrible news of those articles, along with the hospital records of my illness and treatment, now lived in a malignant black notebook, oppressive and scary, that grew thicker every day. Tom spent his evenings paging through it and making annotations, occasionally discovering some new horror or hope. But the black notebook terrified me: it was one thing to know you were sick, but quite another to read about your illness in such dispassionate terms. It was two weeks before I felt strong enough emotionally to tackle the black notebook, particularly the doctors’ reports about me:
“This is a fifty-one-year-old white male with a history of Tourette’s syndrome who stated that approximately one week ago he was having left-sided chest pain.”
Turning each page was like opening a door in a horror film.
“A midline skin incision was made with #10 scalpel blade through the skin down to the subcutaneous tissues. The Bovie cautery was used to control hemostasis and to continue the dissection down to the level of the sternum. . . . The right brachiocephalic vessel and the innominate artery were skeletonized.”
Air, I needed air!
“Because of the extensive adhesions and possibly what appeared to be gross invasion, a large pericardectomy was performed down to the phrenic nerves.”
And now there was pain: a weight on my heart.
“Diagnosis summary: mediastinal mass — invasive spindle-cell thymoma, 12 x 7 x 3 cm mass with multiple adhesions and adipose tissue attached. The specimen is serially sectioned and has yellow-white and pink friable, cut surfaces.”
It became clear to Tom and me that fighting the cancer would be a complex project, not unlike directing a play or writing a novel. And the first step would be learning new words, which we would soon be able to toss off as if we had always known them: mediastinum, radiation fractions, fluorescence, linear accelerator. And then those rhyming, Greek-derived words: dysuria, hematuria, diplopia. Not surprisingly, many of the words sounded vaguely unpleasant: apoptosis, afebrile, epithelial, sternotomy.
I remember, so vividly, how one day a few weeks after my surgery, I heard a joke on television that made me laugh out loud. It was the first time I had laughed in nearly a month, and I thought how remarkable it was to laugh, how strange to hear those particular noises coming from my throat. So here’s that joke:
“The price of gas in Texas is getting so high that women who want to run over their husbands have been forced to carpool.”
I know it’s not a great joke, and I don’t even remember what talk-show host told it, but it marked the beginning of a profound positive change within me. And as my immediate physical health improved, I got very good at making cancer jokes:
“I’ve come to regard my cancer as a test, and that’s OK with me. I’ve always done well on tests.” (This one I actually stole from an episode of thirtysomething.)
And then this one-liner, after I got temporary tattoos of lines and grid-marks to configure my torso for its six weeks of adjuvant radiation: “You should see me with my new tattoos: I look like a cross between an American Indian and an airport landing strip.”
Or this routine: “You know, before my cancer, I was trying to lose weight so I’d look good at the swimming pool in Palm Springs. All I had left to lose was two pounds. Boy, did that turn out to be true! But who knew it would be tumor pounds? And guess what: the moment the surgeon removed my tumor, I met my goal. Of course, I was hooked up to a heart monitor, an IV, and a catheter. But I looked thin!”
I repeated my jokes, honing them until the timing was exactly right, disarming listeners, hoping they would think, Oh, Chuck is doing well. Look how much he’s joking. I suppose that on some level the jokes were for me, too — a way of keeping at bay the terror I feared was unstoppable.
Much of the recent writing on cancer survivors, particularly the work of Bernie Siegel, suggests that those patients who come to regard their cancer as a gift tend to do better. (Though Tom pointed out that in German, gift means “poison.”) For me, this cancer did eventually come to feel like a gift, one that transformed my understanding of life and my place in the overall scheme of things. Perhaps the most important day in my recovery came three weeks after the surgery, when I finally mustered the courage to say out loud the words my cancer. The first time I did, I burst into sobs. But then I said the words again, and repeated them to visitors, and even wrote them in an e-mail, and before too long I began to feel that maybe I could own this cancer as a challenge, instead of being traumatized by it.
Also helpful to my healing were the many get-well gifts from friends: vases of flowers, houseplants, rosebushes, and orchids-of-the-month; Thai food, chocolate, fruit baskets, beef brisket, and lasagna; totems, candles, cards, and e-mail greetings; videos, DVDs, magazines, novels, and even an origami kit. I joked weakly to Tom that if I didn’t get better soon, we were going to have to buy a bigger house. “I’m not strong enough to do all this watering!” And yet all the gifts sent basically the same message: Your absence is noted, and your presence in our lives has been important. Whether or not my well-wishers understood it, their presents were a balm for the existential ache, which had to be relieved before the physical ache could be cured.
And there were dozens of phone calls, particularly from former students, who seemed to be swarming with healing greetings: I felt like Jennifer Jones in Good Morning, Miss Dove, looking back on a life lived, if not spectacularly, at least well enough. One film student of mine, on his way to fame and fortune in California, dropped by with a Japanese maple tree, which he proceeded to plant and fertilize in our front yard. He had no idea how much that tree meant to me (so like the one I had planted with my parents when I was four), nor how often in the coming days I would look out my front door and imagine my body healing a little bit more with each new leaf appearing on its weeping branches.
Another visitor and friend, Katrina, seemed an absolute angel of healing. Almost magically she knew exactly what to say and how to be, because she herself had known both loss and cancer, and because she in no way minimized the existential horror of it all, allowing Tom and me to be our miserable selves, even while inspiring us to move to that more elusive, hopeful place. And so yes, there could be hope. And as for the cancer, there could perhaps be an after.
One dark evening when the moon was hardly visible and my new Japanese maple was surrounded by lightning bugs, I telephoned my cousin Adriana, the only cancer survivor in my family of victims. Diagnosed with a late-stage, inoperable lung tumor, Adriana had been given only a 2 percent chance of living five years. That was more than fifteen years ago. What was her secret?
“Well, Chuckie,” she said, “I think it’s like this.” I tried to imagine where in her house she was sitting while she spoke and what was the interplay of light and shadow on her face. “If you want to live, you need to do everything you can to remain positive. I took . . . what do you call it? Oh, right, astragalus and shark cartilage. I think that added 3 or 4 percent to my chances. I took it for five years; I went broke taking it, but that was OK. My son told me about those things; he’s an organic farmer in California. And I ate. I ate no matter what. I figure, I figure maybe that gave me another 5 or 6 percent more. I ate because my son came back to force me to eat. Sometimes he put the spoon in my mouth. Even when my radiation and chemotherapy made me crawl on my stomach to the toilet and I was vomiting blood, I forced myself to keep eating, because I wanted to live. And sometimes, Chuckie, gee, I collapsed on that tile floor, I was so weak. But I continued to go to work. I figure that helped. And I spent time outside. And so, yeah, I tried to find my hope where I could. And prayer, too. And oh, Chuckie, I thought about your mother sometimes while I was sick, and especially about my dad, who just wasted away — and I think Aunt Frannie just wasted away like that, too — and I thought, No, I’m not going to die like that. I’m not going to. So that’s what I’d say to you: I’d say you got to make your own decision on what you got to do, and increase your percentages where you can, and hope for the best.”
Before my cancer, I would have regarded Adriana’s advice as naive, but now, after cancer, I was seeing the world differently. Adriana had married very young, and her husband, a truck driver, had died in an accident while her children were still in elementary school. For almost twenty years after that, Adriana had become a kind of recluse. And then, just as another man had been making his way into her life, breaking down the wall she had erected around herself, her cancer had struck. And she had said to it: No.
So now I think of myself as a collector of hope. And I know this metaphor may seem banal, but I like to say that I harvest hope the way you might harvest flowers in your garden to brighten up your home. Here’s a fragrant rose, perfect, and there’s a wild daisy, delicate and hidden in the weeds, and so you put the flowers in your basket, and eventually they become a sizable bouquet.
My real garden, which Tom and I nurtured back to life that spring till it was awash with color, was no less important to my recovery than that metaphorical one. This is not so surprising, considering there are cancer studies that suggest gardening has a beneficial impact on healing.
And so I work in my garden. And Tom and I say our affirmations every night. And we celebrate our love and our luck at having found each other twenty-three years ago. And we go to a support group and read all the cancer books. And I meditate (if rather poorly) and strive purposefully to be a demanding patient. And I accept with humility the glowing light that my friend Katrina sends me daily. And as a result, fears lift, and my basket of hope gets fuller.
I am, incidentally, a lapsed Catholic, which means I don’t go to church, but always think I’m capable of doing better. As a young man, I was taught, largely by closeted gay or pedophile priests, that my sexuality was evil. Perhaps that’s why I’ve always been uncomfortable expressing my spiritual beliefs. And yet, since my cancer, it’s seemed to me insane that for so many years I ceded God to people like my Aunt Aggie, who kidnap him in the service of their political prejudices. And so it is with a certain embarrassment that I’ve come to understand that “collecting hope” is itself just another metaphor for finding God. Or trying to. And I try not to be too bothered by my intellectual fear that a deathbed conversion is the ultimate cliché.
Improbably, about a month after my surgery, as a result of second-opinion consultations with a research pathologist from Columbus and a thymoma oncologist from Osaka, Japan, we discovered that my thymoma was even rarer than we had thought: a stage-three thymoma, type A. As we learned more about this particular strain, I suddenly felt as if I’d won the lottery. There have been perhaps only a dozen other documented cases around the world in the last thirty years, and those patients — especially with radiation treatments — do not seem to be dying from their cancers at all.
Oddly, radiation can both cause and cure cancer. The trick is in delivering just enough to kill the cancer, but not so much as to harden the heart, paralyze the spine, or create more cancer later in life, long after you have returned to complacency. When radiation is delivered to your body, you feel nothing at all; the rays are not visible, and the sessions last only seconds. The high-tech machine that rotates around you seems not so very different from the shaken rattles of the witch doctor. Find God in the machine, believe that the magic is good, and you shall be healed. Maybe.
In the last week of my radiation therapy — ending earlier than originally prescribed because of persuasive journal research I had given my radiologist — Tom and I went downtown to the riverbank to watch Dayton’s Fourth of July celebration. We sat so close to the bursting fireworks that at first I recoiled, thinking I might be hurt by the falling embers. The glowing sky was filled with colors, so vivid I felt I could touch them. I turned to Tom and whispered, “Imagine that the fireworks are burning away my cancer.” And Tom squeezed my hand in the darkness as we watched the colors: exploding, colliding, radiating, falling, burning away, fading; multiple universes created from booms and echoes, then disappearing into the black, starless sky, into nothing.
“I want to stay here,” I said to Tom after the fireworks had ended and the crowds had started their mad dash to disperse, oblivious to our melodrama. “Then let’s not go yet,” he answered, and so we just sat there, tears streaming. When almost everyone was gone, and Tom and I began to feel the solitude of the night, my thoughts turned away from myself and toward Carol Lee and my Aunt Frannie and my mother and father: Were they all up there in the sky somewhere, watching? Had they been exploded into nothingness, or returned to some great, hopeful beyond?
I don’t fret anymore about dying on an airplane. If I die — no, make that when I die — I imagine it will happen in a hospital room, maybe the result of a heart transplant that doesn’t take, or of a lung that no longer works because its phrenic nerve has been removed, and I imagine my death taking a long, long time.
But on most days, I do quite well and am amazingly cheery. I am following my oncologist’s advice: I am learning to live with uncertainty.
And I wonder, is it surprising that the most powerful experiences are mundane? Because I can remember still, when I first went to my doctor with my initial symptom, his calm allowed me to sweep my fears into a box that I could seal and carry away. And I remember now so vividly how it felt then. Do you know the feeling? How great it is when you leave your doctor’s office and think you’re OK, in fact, will be OK forever, because you have a clean bill of health or a prescription in hand, and you can get into your car and drive wherever you want, and something as common as the blue of the sky can fill you with happiness and seem so utterly remarkable.
And you, what about you? As you read this memoir of my cancer year (is it a year like any other?), are you hurtling toward some catastrophe as yet unknowable?