My stoma—my shit on the outside. There was no way to get used to that. So better outdo it, better touch the stoma, know the stoma, see the stoma and, despite my sister’s protestations, I continued and I don’t know why this little fleshy nipple made me feel suddenly maternal (it was most likely the drugs), made me want to caress my own body and protect her and myself for perhaps the first time in my life. Why it made me laugh a crazy, giddy laugh, as if the stoma nipple were a kind of baby born out of my flesh. I wanted to know it/her. My stoma was born and the birth announcement was The End of My Invincibility. I could no longer hide my fleshy, exposed human parts.
With the help of a fabulous tough-love nurse, I learned to take care of my stoma—to clean her and put cream on her, wrap her properly, keep her from getting chafed or irritated; and I see now how this exposure, this shit-filled nipple of my vulnerability, was the pathway to mercy.
SCAN
HOW’D I GET IT?
Was it tofu?
Was it failing at marriage twice?
Was it never having babies?
Was it having an abortion and a miscarriage?
Was it talking too much about vaginas?
Was it worry every day for fifty-seven years that I wasn’t good enough?
Was it the pressure to fill Madison Square Garden with eighteen thousand or the Superdome with forty thousand?
Was it the exhaustion of trying to change?
Was it the city?
Was it the line of two hundred women repeated in hundreds of small towns for many years after each performance, after each speech, women lined up to show me their scars, wounds, warrior tattoos?
Was it suburban lawn pesticides?
Was it Chernobyl?
Three Mile Island?
Was it my father smoking Lucky Strikes and my mother smoking Marlboros?
Was it my father dying slowly and never calling to say good-bye?
Was it witnessing him insulting waiters in restaurants and me going back to give them my allowance?
Was it my mother’s thinness and frailty?
Was it bad reviews?
Or good reviews?
Was it being reviewed?
Was it sleeping with men who were married?
Was it always being third?
Was it my first husband sleeping with my close friend?
Was it shopping and needing to shop?
Was it being a vegetarian for thirty years?
Was it Froot Loops?
Massive chlorine in swimming pools?
Was it Tab? I drank a lot of Tab after I got sober.
Was it Lilt (the toxic-smelling substance my mother used to perm my hair)?
Was it Tame (the solution she used to get the tangles out)?
Was it crinoline (the abusive and starchy material I was forced to wear underneath my dresses)?
Was it Shirley Temples? Ginger ale with red dye number two juice and a red dye number two cherry on top—a favorite for the sophisticated country-club alcoholic father.
Was it drinking water out of plastic bottles?
Not being breast-fed?
Canned chop suey?
TV dinners?
Was it turquoise Popsicles?
Was it Epstein-Barr?
Was it in my blood?
Was it already decided?
Was it deet?
Was it that I didn’t cry enough?
Or cried too much?
Was it promiscuous sex?
All those arrests at nuclear power plants?
Sleeping in radioactive dust?
Was it my IUD?
Was it birth control pills?
Was it not enough boundaries?
Was it too many walls?
SCAN
CIRCUMAMBULATING
There is a miniblackboard in my room and a red felt-tip pen, and each walk I take I get a check. I need six checks a day. The first days I only make two or three walks (one to the door of my room, which is about four steps and then back). I put down five red checks, which is a lie. I cannot believe I’m cheating, but no one is really buying it. Everything about the hospital is pushing me before I feel ready. I do not want to be awake. I do not want to learn how to change my bag. I definitely do not want to walk. There is a walker and I lean on it and I step, crawl, step, crawl clockwise in a circle around the nurse’s stations outside my door. I am circumambulating around the nurses, who are without a doubt the object of my worship. Circumambulating like the Buddhists I once joined at the Jokhang Temple in Lhasa. They circle for hours in an attempt to reorient their minds in the direction of greater and more spontaneous compassion. The nurses here at Mayo—Monica, Rhonda, and Sarah—are my lamas. The tenderness and precision in the way they change me and turn the corners of my sheets, their kind but firm approach. The way they get delicious flavors into my ice chips.
Today my son makes the circuit with me. I feel old and ugly. My hair is limp since the surgery, and my skin is so pasty. I feel like a mangy dog I once saw in front of a temple in Kathmandu. He clearly had rabies and was foaming at the mouth. A monk told me that all the hungry, scuzzy dogs who hung around the temples were really lamas and priests who had never reached enlightenment. I had a photograph of that scabby dog above my desk for years as a reminder to work on my shit. Now I was “mangy dog with son.” He didn’t push me and this worried me. For years he had been my sadistic workout coach, punishing me beyond all limits. My son who I adopted when he was fifteen and I was twenty-three. I was married to his father. I wanted to protect him. I always did. My son’s mother, Diane, and I looked a lot alike. When she got shot my son was five, and he saw them wheel out her bloody body. They never told him she had died. He waited for a year and she didn’t come back. So I work super hard to never leave.
Now he was very quiet beside me. I could hear the inner workings of his brain—each step in the circumambulation a recalculation and an assimilation of my proximity to death. I wanted to take his hand and say, “Listen, buddy, I am not going to die, okay? I am not your bad karma or your endless merciless abandonment story. I will never leave you, remember? I made a deal.” But something in me couldn’t say it. Maybe this was the moment where it changed. We’re old now. I’m fifty-six. You’re two years away from fifty. Maybe right now I don’t have answers. Not for you, my son. Not for anyone. Maybe the high tide grabbed our canoe when we weren’t looking and we’re suddenly out at sea. Maybe all we do now is row and move with the currents and hold on to each other when it gets rough and be happy if and when and where we land. Maybe I have no more offerings, only this emptiness that I am willing to share.
SCAN
ICE CHIPS
I had a bisected colon, a missing rectum, a bag, and absolutely no idea how food was even going to work or where it would end up. In my visual imagination, all my missing organs and remaining organs were confused. And yet all I could think about was a hamburger. When the pain got bad or I started hallucinating free-floating cancer cells, I meditated on hamburgers—the meat and the bun. I could taste the blood. I wanted the blood and the grilled hamburger juice. I wanted the condiments, the tomato and lettuce and pickles and ketchup. I wanted to hold the hamburger in my hands. I wanted to be a normal, healthy person sitting in my bed eating a hamburger. Was it nostalgia for those rare moments before I turned sixteen and swore off meat, when we were allowed to have hamburgers and we ate in the kitchen, which meant my father wasn’t there (he never ate with the children or the help in the kitchen), and there might be fun, a moment of fun? So maybe hamburgers meant fun. Maybe the nostalgia was for what wasn’t—a normal, happy hamburger family with French fries on the side on a Saturday night. Maybe the hamburger was comfort. Or maybe it was defiance. I had been a rather righteous vegetarian for twenty years and I had come out of the surgery wanting meat. I was going to eat meat, I was going to stop being so good, so perfect, so hummus-tofu-lite.
Meat had always repulsed me. But now I was out for blood. I could have had fangs. I shocked
myself and my friends, Pat and Carole. They said they thought it might be too much to go from a thimbleful of Jell-O to a hamburger. I said I felt a hamburger was my ticket back. They seemed disturbed, as if I was a lifelong Communist suddenly selling hedge funds. They needed me to be who I had always been for them. I said a lot of things had changed. I had cancer, for example, and lost organs and had a bag. They wanted me to be happy. That is all they wanted, and they wanted me to stay alive. They went shopping in Rochester and came back with wildly colored pajamas and socks. They arranged my flowers and adjusted my pillows. They sat with me through several of my hardest nights and ended up sleeping in my room on crazy cardboard cots. They made me laugh and bonded with the nurses, and eventually they got me the hamburger. They did. They even served it on a plate with fries. I don’t know if I am inventing this, but I believe there was a group of loved ones, a stunned audience around the bed, as I ate it. Even the senior nurse, Monica, pulled up a chair. I didn’t mind them watching. I needed witnesses. Something was coming from my body, this call for flesh and blood. I was eating, devouring. I could not stop it. It felt obscene almost, transgressive to be this open, this naked, this hungry.
It reminded me of visiting the lions in the park at the Mara in Masailand, Kenya. About thirty cars were gathered around one spot. Families and couples from all over the world were frozen watching a huge lion dragging the carcass of a zebra across a field. It turns out lions don’t even chew. They just bite with their massive jaws and swallow. The lion had no shame, but she had no pride either. Something inside her was compelling her to do what she needed to do and she was doing it. It was that simple: survival. No need for apologies, no need for applause.
I watched that lion with the same horror and delight that I saw on the faces of my friends around my hospital bed. I ate way too fast. I ate every bite. Later that evening, my body shut down like a lawn mower with a big stick jammed in the gears. They called it an obstruction and I vomited … a lot. I was on ice chips for the next ten days and lost almost twenty pounds, but I was lion.
SCAN
PATIENT
“You have done many things,” said this very beautiful, very tiny Italian doctor who appeared one day in my room like a gnome. “But you have never been a patient. Now you will learn to be a patient. This will be hard for you.” He was cryptic and correct. The last thing I wanted to be was a patient. I didn’t like sick people. First of all, they were sick. Sick was not well, not able, not working, not making things better. Sick was surrendering, caving in. Sick was wasting time, not adding up. Sick was alone and stuck as the rest of the well world moved by.
For some bizarre reason I am wearing sunglasses in my hospital bed. (I look swollen and horrible and because of all the drugs I think a little lipstick, sunglasses, and my pink knit cap make me look better, but in fact I look insane.) I am wearing sunglasses hoping the gnome man cannot see my eyes or hear my thoughts, which are spinning out of control at the mere suggestion of being a patient. There is obviously something scaring me even more than the cancer. It is the idea of stopping. The idea of being still. Of not being able to do or make or travel, or speak or organize or write. I don’t want to be a fucking patient. Then the Italian doctor says, “It will be a threshold for you. You will learn to have pity for yourself. You will learn to be a patient.” In that moment I want to wrap my IV tube around his neck and jerk it hard.
As part of me rages and refuses, another part of me is already there. I watch it there and it knows, truly knows, something else. This part of me likes the gnome, wants to crawl up on his lap and be his patient. This part is so tired. This part knows he is telling the truth, he is a guide, giving me a challenge, a vision, saying, “This is it. Your life has to change. It cannot be driven anymore by a need to prove anything. It cannot be a reaction, a ‘fuck you,’ an ‘I’ll show you.’ That’s how you got sick. That is what your sickness is: overtaxing the body, the nervous system, fight-or-flight, always driving off the imagined enemy, always pushing and driving yourself, pushing and fighting and driving.” I am too tired now. I have cancer. My organs are gone. I have tubes coming out of me, and a bag. My body is sewn up the center. There is no drive. I can’t find the gears. I am a patient. Patient. Patient. And something relaxes in the center of me for the first time since I heard my father raise his voice, and I sleep, I really sleep.
SCAN
THE RUPTURE/THE GULF SPILL
At Sloan-Kettering they show it to me on the CAT scan screen: a huge pool of blackness in the center of me—the same day as the Gulf oil spill, the now poisoned Gulf of Mexico somehow inside me. Sixteen ounces of pus. Two point five two million gallons of oil a day. An intra-abdominal abscess. Contamination from postsurgery, postexplosion leaking, the spread of infection to the bloodstream to the ocean. My body is rupturing, shit leaking from where they closed it up, leaking there and spilling, purging—same moment, same day BP exploding rising up, gushing out of me from every orifice, nothing can stop it, trying to shut it down, but not able, there is no stopping it, and it smells putrid, otherworldly, and it fills the bag and I can’t get to the bathroom and the bag explodes and I am puking, my guts still sewn raw from the surgery, and it really hurts.
Symptoms may include abdominal pain, chills, diarrhea, oil penetration destroying the plumage of birds, making them less able to float in the water, less able to escape when being attacked, preening leads to kidney damage, altered liver function, ruptured digestive tracts, lack of appetite, nausea, dolphins spurting oil through their blow holes, rectal tenderness and fullness, seal fur reduced in its insulation abilities, leading to hypothermia, vomiting, weakness.
They need to start the chemotherapy, but they can’t until the infection is gone. I’m too weak and there will be too many complications. Chemo compromises your immune system and I am a sea of infection. They will need to suck it out of me. Treatment of an intra-abdominal abscess requires antibiotics (given intravenously) and drainage. Drainage involves placing a needle through the skin into the abscess, usually under X-ray guidance. The drain is then left in place for days or weeks, until the abscess goes away.
After two false starts, BP engineers successfully insert a mile-long tube into the broken riser pipe to divert some of the oil to a drill ship on the surface. Over nine days, the tube siphons off about twenty-two thousand barrels of oil, which is just a fraction of the total spill.
Over the next three weeks, the Sloan-Kettering team will insert tubes on three different occasions into the center of my abscess to drain the pus. The first time I am wheeled into the operating room, I decide to wear sunglasses because it is so bright and I feel too exposed. There is a madly arrogant rock-and-roll surgeon dude who treats my body like some beat-up practice guitar. He tells me to keep my sunglasses on because they’re hot (and he doesn’t mean me). Then, before I know it, he is driving a thick needle attached to a catheter tube through my surgical wound and I yell and tell him it really hurts, but he doesn’t stop or drug me properly or even seem to hear me. I scream more and he just keeps going. I hate his guts. I am crying and I feel like some groupie chick who’s decided too late that she doesn’t want to have sex with the band in the back of the van, but no one is listening.
Afterward I meet with my oncology team, who seem utterly distracted. I explain that this procedure really hurt and I’m super weak from the infection and have lost a lot of weight. They tell me they can only begin chemo when the infection is gone and that they have been waiting for me. I feel as if I have failed and that my cancer cells are psychotically subdividing as we speak. They want me to consider radiation. They send me to another distracted, testy, arrogant doctor dude who makes me feel that my questions are childish and wasting his time. He tells me that they were planning to radiate the place where my cancer was but that scar tissue has already formed around my intestines and they don’t dance and move the way they should (again my fault). There is a risk that the radiation could zap the same intestine section over and over, and if that h
appens I would probably never be able to eat again and I would have a permanent bag. And so I ask my irritating questions: Is the radiation necessary? “We don’t know.” Is radiation more effective than chemo? “We don’t think so.” Are radiation and chemo more effective together? “We are not sure.” Is chemo more effective than radiation for uterine cancer? “Yes, we know it is.”
Then why, I ask, are you even thinking of radiation if it could destroy my intestines and make it impossible for me to eat or poop again? He says, “It’s up to you. Only you can decide. We have given you the data.” Implicit in this is my impending wrong decision. And I say, “What would you do if this were your body?” trying to bring his body into the room. And he says, “Can’t say.” And I say again, annoying him further, “But if you do not know if it will help, why are you putting me in the position where I have to choose?” Then he says the mantra of the end of the world. “WE LIKE TO THROW EVERYTHING AT IT. That’s all we know how to do.” And I say, “The only problem is that IT is attached to ME.” And I swear, he doesn’t flinch. Me is irrelevant. Me is personal and specific. Me is what has to be passed through to get to where he is going. Me is what can be sacrificed to get better information. And I suddenly know what the bride in Pakistan felt when the drones bombed her wedding and her fiancé splintered into pieces and her mother was only fragments of dress. They were throwing everything at al-Qaeda. And I suddenly love my infection and my protective scar tissue, which are saving me from the everything they want to throw at me.