My mother told me just this morning (Friday, June 17, 2011) that I should write something about how my affliction with cancer is really an affliction that the whole family has in some way. I believe her. I believe it. She says, “You should write that because we’re all affected. Maybe I’ll try my hand at it. Maybe I’ll do it.” She laughed because I don’t think she even believed she would try to write it, and if she did she wouldn’t show it to me. I don’t need the story written from my mom, I know it’s true. She’s taken to itching her arms for worry over me. She’s taken to a barrage of questions daily about my health and whether or not I’m following doctors’ orders. She’s taken to saying, “This is the one. This is the treatment.” Even if I tell her not to say this, rather harshly at times (my own superstitions), she still tells it. She’s always been a beacon of hope. But, being my mother, she’s afflicted. She might not have what I have. But she’s got the thing. We all got it.
I told her, “Do it. I don’t doubt it. Write it.” It’s true, I don’t doubt that everyone closest to me is “sick” (from my best of friends to my closest colleagues to my farthest acquaintances) and in some way has been made to feel the bizarre suffering I’ve had to endure, but no one as much as my wife, Emily, as she is closest to me everyday. She wakes to it and she’s also carrying our baby, due in one month. We will keep it from him/her as long as possible, but no doubt, he’ll be caught up in the mix. You can imagine the stupid guilt I have in all this. What stupid guilt, I know. Throw it away, people tell me.
I met my wife Emily about three years ago this past April. I met her online only a few months after my first round with cancer. I met her six months after the doctors told me I had four months to live. They told me one night, October 5, 2007, in Houston, at MD Anderson Cancer Center. Dr. Robert Benjamin gave me the news after we waited in a small, very cramped room populated by cotton balls, heart rate monitors, various kinds of scopes, medical machinery of noises mostly. We must have waited in that room for four hours at the very least, but it all depends on who you talk to. The more the time passed the more likely, now that I think about it, my fate was sealed. He must have been trying to clear the floor of other patients so that he could give me all the time in the world to ask questions, even if questions were the last thing on my mind. Unless he could answer for me what it meant this turn of phrase “four months to live.” Unless he could answer for me what it meant to “get one’s life in order.” Unless he could answer for me, “Where do we go when we die?” Unless he could excuse for me the feeling I had that I had done very little with my life and nothing really to show for it (but who does at 31?). I wanted him to be God. But he couldn’t be. He was just an oncologist, and with the news he brought me, all the way from God knows where, we thought he was some kind of evil thing. He was bald and short and his lips were wet and red and saliva bunched up white and stringy at the corners of his mouth when he talked. He seemed to be wearing a perpetual frown. He was very white and it looked like he was wearing powder or some sort of base make-up. I don’t know what you call it. He also wore a white doctor’s jacket that went all the way down to his feet, he was so short; and the jacket was covered with various kinds of flair, buttons that said things like “F@#!% Cancer” or “Live Each Day Like It’s The Last” or “Glory in Today” or “Cancer Sucks.” It was all over his jacket. It was like a big joke he was playing on me given the news he just handed me. He definitely was out of this world.
We sat there. When I say “we” I mean my mom and my first wife, a relationship I’ve refused to write about until now. I cried and I remember my mom telling me how “we’re going to beat this thing.” She had cancer then too. I believe it. She’d been diagnosed. Everyone close to us had been diagnosed. She was leaning against the medical bed if I remember right, as close to me as possible given the smallness of the room; and I remember just saying, “What? What? What does this mean?” I remember saying it over and over again. Then I remember gagging like I was going to throw up.
My mom had great concern. She didn’t cry though. I remember that. She was the strongest I’ve ever seen her in my entire life that night. It was like she was waiting her whole life for that moment. She would argue with me now having written that and shared it with you, like it was a terrible fate to be waiting for a doctor to tell her only son that he has cancer and may not survive, but my mom’s reaction was so steady and so sturdy that it was like she knew it in her heart, could feel the cancer in me and knew it was in her by then and she was like a CO at war with men and she just stared at me I remember. Stared at me hard like she was telling me somehow that I’d have to be strong now. Like I’d not known what strong was and she was going to teach me and she just stared at me and kept telling me that this was nothing. “We’re going to beat this, Rafa.” She kept saying it. It was a mantra, a code. She knew it her whole life. (Oh, this makes me want to weep writing this. Oh, boy, makes me want to just lay down and die, the fury of a mother, the sadness, the knowing that must happen, have to happen — this feeling budding in me as I await the birth of my first child with Emily). She was ready for war. Staring, leaning into the bed. “We’re going to walk out of here and beat this thing, Rafa.” She may have even called me “Rafael,” which she never does unless I’m in trouble or she wants to tell me something important. It may have been, “Rafael. Listen to me. Rafael, we’re going to get through this. You’re going to win.” She kept saying it. She knew this was going to happen. If she didn’t she hid it well.
Dr. Benjamin’s nurse was frowning. It was very late. She looked tired, but she was taking notes. Dr. Benjamin turned to my mother when she said those things to me, and he told her she couldn’t speak to me in such a way anymore, that the words we used and the language we employed now for the coming fight had to change. I thought my mom was going to kill him. I think I would have tried to kill him if it was my son sitting where I was and some doctor told me I couldn’t tell my son he had to have hope. Yes, I would’ve, in all my rage, I would’ve tried to kill the doctor. My mom somehow kept her cool. Maybe because she knew she’d have to help me later once things sunk in.
At that moment I had the very distinct feeling of being in a Camus novel. I’d taught him enough and taught Sartre too, but it wasn’t until the doctor said “four months,” I’d not really understood the feeling of being faced with my own mortality. I would wax on for hours with my high school students, but I knew nothing. Looking back it’s funny how little I knew about anything. It’s funny how little we know about anything anywhere. How much we talk. It’s funny all the jibber jabber, the excited, racy, vapid nothing talk of the world.
And then there was my X. She sat there next to me bawling. She was what they call “emo” — she wore some sad affect, in love with photographs of vacant warehouses or something or would get caught up in suicides or empty motels along the highway, as if they had some key into the the heart of the universe. She was the lead singer in a band that was sort of close to making it, and that night she wore a yellow t-shirt with some kind of band name or some sort of ironic saying on it, like, “The A-Team.” Or something like that. She wore tight Diesel jeans and Saucony shoes. She was very conscious of a look and was true to it. I don’t know now what I was doing then with her, but I had been doing it, following along sort of, playing a game I knew, even before cancer, I couldn’t keep playing. Now, it seemed cancer would call out the marriage for what it was, which was basically empty and nothing. She would agree with me if you asked her now, I’m sure of it. It was all wrong. We’d been caught. We’d been found out. Here we were.
Nonetheless, it was like a fountain had been turned on inside her and all the water of the world had been jammed up and now was coming out now full-force. The look and feeling of despair could be cut with a knife. The room got that much smaller as we were flooded with her emotion and despair. I felt like I couldn’t match it. I don’t remember, even now, if I heard the doctor right, but listening to her go on I was forced to reckon with the bad news, which I was still trying to understand. The way X was crying it seemed like I was already dead and buried. Later I’d come to understand the tears and the fear and despair. It had nothing to do with me, but it had everything to do with guilt, for later I’d find out she was cheating on me with, of course, the guitarist in her band (funny, right? It’s always the tattooed guitarist named “Jay” or the little secretary named “Rose” or something like that). The place shook with her cries, which couldn’t be stopped. I didn’t know what to do, and I tried to hold her hand and rub her shoulders, but then I thought it was me that had the death sentence. It was me that’d been told I had terminal cancer. My mother was now trying to see if there was anything else we needed to do so she could get us two kids out of the room before the whole place came down in rage and sadness and despair. I was only 31 and my ex-wife, much younger than I, she was maybe 25. It was after 9:00 p.m. on October 5, 2007. It was dark out. The night was thick with darkness. Stars here and there, but you couldn’t see them hardly because all of Houston was lit up in the distance wherever you looked. Like wildness. Like terrible hanging sadness, the yellow lights of Houston, I remember.
(Everyone had cancer. Everyone’s got it. My mom’s right. So, here you go, mom)
Where were we? What were we doing ? What roads had we taken to get here?
In the end, after all the terror of those early months with cancer, it was like my ship had been righted. Like, the only way for me to get on with it, my life, was to get cancer. To keep getting cancer, a constant reminder to Life. A terrible way to go, yes, a terrible row for my whole family, but, nonetheless, a lesson — a necessary season, an endless season maybe, but unavoidable — potentially windy, too hot, too cold, a season of extremes, yes. But the Real.
Later, back at the hotel, my mom, like a good Italian mother, made us eat food. I remember eating bruschetta. Wolfing it down like it was the last thing I would ever eat. I remember laughing very much at dinner, cracking jokes and being snide, making vulgar asides that revealed a great anger that I think had always been in me, but now had been made real, brought out center-stage by cancer’s minions — fear and sadness. It was all so off-kilter. Like we were a boat askance in the middle of the Atlantic. Something adrift.
We were staying in the Hilton. It was under construction.
My X began her long, damaged love affair with food and sleep that night. Her standard operating procedure became “anything but this.” She would sleep for hours, for days. She would stay up all night and finally go to bed when I would wake. Except for the strange dreamy nights when she’d barge in on my pharmaceutical-induced sleep begging me not to die. Weeping, she’d tell me, holding my head up, my eyes barely open because the drugs I took left me damaged and wasted, she’d tell me, I remember from the fog, “Rafa, please don’t die. Don’t die. Please don’t die. You can’t die.” I’d tell her, laughing maybe at the absurdity, “I’m not going anywhere. I’ll be here forever. I ain’t dying. Now let a man sleep.” “Rafa,” she’d whisper. “Please don’t die.” “Ok,” I’d tell her and then she’d be gone. Like a ghost of my imagination because it was the only time I ever got her close to me. I would fall back asleep wondering why she didn’t want me to die. It shouldn’t be that way. But it’s how my nights went then before Emily came into my life and loved me and I loved her.
X’d eat and eat. I don’t say these things out of spite or anger because I don’t have those feelings anymore, but I remember being very alone in that time. I remember that if it wasn’t for my mother (or even my mother-in-law, a cancer survivor herself) being there with me in those months, when I first experienced chemotherapy, I would have been very alone indeed. Certainly friends and neighbors came by often to offer their support and love, but I slept alone most nights and really had no energy to understand nor care where X was spending her time. It was all about the band. I didn’t want to be a burden (the default position of any cancer patient), and so I told her to do whatever it took to keep her sane. She played shows, went to band practices, cavorted with whoever, played groupie. Her band was loud and crass. They opened, ironically, for bands like Rise Against. I often wondered if she caught the reference, this rising against. I often wondered what she was rising against. She was angry and sad. Sometimes in all our lives we are sad and angry. There’s no known antidote, and it can be worse than cancer.
My mom cooked, cleaned, and kept my house. We were sick together. I didn’t know where X was. I don’t know if X knew where she was. With cancer, nobody knows anything with any kind of certainty. There’s lots of knocking on wood and praying and keeping fingers crossed. There’s taking your vitamins and eating your vegetables. There’s aimlessness and pill-popping and driving angry on Lake Shore Drive, suicide missions if you will. There’s silence and nothingness all over the place. It’s just the way it is in the beginning, I think. I’m not speaking to any new problem. Ask your local cancer patient. They’d agree. If they were honest. Ask the mother or the wife of the cancer patient. They’d tell you the same. They’re sick too. That’s what my mom posits. And I believe it. I don’t doubt her on this one.
My mother wanted to me to deal with the problem of my marriage then. But I told her I could not. In the back of my mind I made a pact with God that if I could just get through this I would leave X as soon as I could, part of a starting over. X and I had many problems (and I was not innocent — I did my fair share) before cancer, but the cancer made things more strained, rude, and acute. She was thrust into the role of caregiver, and she wasn’t able to be that and I understand that now.
Miraculously, after two rounds of chemo, I had a surgery that took my cancer away for almost two years. That was in December of 2007. By the end of February 2008 I found out that X had been cheating, even before the cancer. It was like she wanted to be found out, wanted to whole jig to be up, and, well, it did come up.
It was a text message. Something so simple. A text message at dawn. I was about to walk the dog, and my whole life changed again. The dog had to piss and I couldn’t stop staring at the love message from “Jay,” something about her being a “pumpkin head sugar pie.” I stared at the lousy love message. The dog pissed on the floor. Funny, now, when I think about it. I said it out loud even. The dog looked at me and turned his head sideways like I’d said, “Bone,” or something. My whole life was headed to “pumpkin head sugar pie.”
Isn’t that funny?
So, I left her. I had a renewed lease on life. Things were sunny. Life was good.
I met Emily a couple of months later. Like I said earlier, we met on eHarmony. When we met I was still sort of recuperating, but I had begun the long process of putting my body back together after such sickness. I met her at the Green Zebra Restaurant on April 24, 2008. I remember waiting by the bar for her and being very nervous because she was very beautiful from what I could gather in the photos she had put online. I didn’t know yet how tall she was, but she was blonde and breathless and, from our brief correspondence, a woman who had traveled well (been to Africa, alone, to build homes with Habitat for Humanity) and wanted to see more of the world.
When she walked in I was drinking a tonic water or something ridiculous and she asked someone who worked there about me. I don’t know what she said, but by then things, as I remember them now, went into a slow motion. She was talking to him, and, as it always goes with her, men sort of trying to put the moves on her, the man working there said something slick to her and she laughed a little out of politeness but she was already ignoring him and looking over the whole joint and I was standing there in the wide open. I had put some photos online, but I was embarrassed by them because they were all fairly recent and I was still bald from the chemotherapy and still sort of skinny and I remember thinking, “Why don’t I have any other photos?” It was like I had come out of nowhere. “Where was the old me?” I asked my iPhoto program? I had come out of nowhere, and I thought, standing there watching her look for me, she’s looking for a man from nowhere. “She’ll never see me.” I stood there nervously.
The man was still talking to her and she finally saw me standing by the bar. I let her look and look and I might have let her look on and on if I could just look at her like that forever. “Oh, boy” is what I thought. “Oh, man,” is what I said to myself. I may have even said it out loud, shifting the weight from one leg to another. That’s what I felt like at that time. I would have let her look and look and stand there and look and me just look at her and I know it sounds strange but I felt my stomach turn and I watched her looking for me and the little man in the restaurant making slick comments or something and she towered over the place, boy. I don’t know if I fell in love with her then, it might have been some point right after, but it began there. But I think I did fall in love with her then. But I’m always so wary of such things. But no matter anymore. I fall in love with her again every time I see her in the morning. It’s just the way it is. It’s just the way the world works. This great world sometimes freakishly brutal but somehow sometimes brutishly simple and good.
She saw me finally and smiled. And I’ll never forget it. A sort of relief in her face and she nodded in my direction and walked towards me with her long legs and long stride and she was clutching her black bag, maybe out of nervousness, I don’t know, but it was so lovely. She was walking up the short ramp to the bar to meet me. She was clutching her bag and she was wearing a knit black shirt that hung loosely over her shoulders and it would be a lie to say that I didn’t notice just how beautiful her neck was and how wonderful it was to see her earrings move breathlessly across, almost tickling, the tops of her shoulders. Her hair, blonde, she kept pushing back behind her ears. Her mouth, a kind of sadness there, but that smile like breathless sunsets that seem to hang right there on the horizon forever, sunsets I used to experience living in Los Angeles when I was much too young to understand that somewhere later in my life I’d see the same thing in the smile of a woman I’d fall madly in love with, that I was really looking into Emily’s smile. It all moved in such slow motion. I may have fell in love with her then. I don’t know. It sure sounds like it, huh?
As she nodded, I gave her some little ridiculous wave of the hand. It was stupid. She laughed a little, and when we met she put out her hand and told me her name was “Emily.” I told her my name and we stood there shaking hands in a slight silence while I gathered myself because it was like I was just coming out of some long dream that I’d been in for my whole life, like being anesthetized for 32 years. I didn’t know she’d be my wife then. We didn’t know any of what was to come then, but we stood in the awkward silence before the maitre’d came by and sat us down. I moved nervously from foot to foot like I was shadow boxing and she kept doing the thing with her hair, pushing it behind her ears and pulling her bag up on her shoulder. I don’t think we ever experienced that kind of silence again. That night I told her about cancer and my past as an alcoholic, which I rarely did, and she told me about her dad, who had killed himself a couple of years earlier. At one point in the story, she said, “I don’t even know why I’m telling you about this. I don’t tell anyone.”
I shrugged my shoulders. She went on.
We closed the restaurant that night. And we closed many restaurants down other nights too. By Thanksgiving she was my fiance. By June she was my wife. The following month we were living in Las Vegas, trying our hand out west (following some kind of American dream but wide awake to the potential failure of it and then, being awake, realizing our lives were in Chicago). The month after we moved to Las Vegas, August, we found out my cancer had recurred. And here we are. Five recurrences later. Surgeries, chemotherapies, and now, experimental treatments by the United States Government.
I’ve hit the big time.
Thank God for cancer. Some days, I thank God for this disease which seems to take so much from me physically, but has given so much to my heart that it makes me want to just lay down and cry about how beautiful the world is and how the road we think we’re on isn’t the road at all maybe, how stupid we could be on these roads we think are the right roads even when all the signs are saying, “Road Closed,” how hard-hearted we can be, how stubborn we are even when the signs are saying, “Detour,” we keep heading down the road, even if it’s saying, “No Outlet.” But there we go. If it wasn’t for cancer I’d have already driven off the road. Falling, falling, falling. Falling away into nothing. I was that close. Put your index finger out in front of your face and put an inch between it and your thumb and that’s how close I was to nothing.
At night, before bed, when I was just a little boy, my mom would tuck me in at night and I remember asking her if she loved me. She would laugh very hard and I could sense a sort of pain in her heart, even when I was little, like the question suggested I thought maybe she did not love me even a little. My mom would lean in close, and I remember the way she smelled in the dark, a perfume I’ve now long since forgotten, maybe something called “Poison” that she bought at Saks, but it is of no matter. I remember her leaning in and bringing the covers up tight to make me feel warm and safe, and she’d tell me that she loved me like all the stars in the sky. She used to say very quietly, framed by the yellow light coming in from the bathroom of our little apartment at 1597-5 Hawthorne Dr in Mayfield Heights, Ohio, so much so that I can’t always make out her face in the dark, but it was her, and she’d say, “I love you more than anything, Rafael. Like every star big and little in the whole universe. Do you know how much that is? Do you know how many little stars there are ? Do you know how many big stars there are?
And here I’d smile and I’d put my hands and arms out as far as I could stretch them and she’d laugh and say, “Yes, honey, that’s it. And you don’t forget it. That’s how much I love you.” When she’d go away and close the door a little, enough for some of the light to come in my room, a certain slant of light, I remember trying to think about her brand of infinity, I’d stare out the window or hard into the wall of my room and let my gaze go slack trying to see the universe in such a way, such infinite love.
Now, I have the distinct knowledge of how far away I am from nothing. Little did my mom know that when she was telling me that when I was such a young boy that she was really telling me how far I was from nothing, how far we all are if we just pay attention to the dumb thing we’re in called Life. So, yes, my mom’s right. We all have cancer. But the cancer I got, the cancer I’m talking about, let it grow, let it metastasize. Let it grow all over us as a family. Let it grow, father. Let it come, mother. Let it sing, sister. Let it feed, wife, and grow and eat, friends, and let it grow fat, child. So shall I. So shall I. It’ll be enough love to eat for a hundred thousand years of suffering. A million trillion. Arms wide open.