In the Body of the World (7 page)

I am sick with hunger and they give me the approval to finally eat something. I am swallowing the first bite of salad when a nurse-practitioner arrives and starts screaming that I have totally messed up my chances of having surgery on the abscess. Lu tells her she doesn’t have to be so punitive. Perhaps she hasn’t noticed that I’m sick? This is the sister who has spent the last thirty years working to save AIDS babies, who has given her days to early child care in the poorest neighborhoods. This is the sister who knows that what happens at the beginning of your life determines everything. You don’t mess with Lu. The nurse-practitioner leaves and comes back about ten minutes later in a total 180. She tells us they are ready to do the surgery. I am panicked now, not sure if she was lying about the procedure before or if she has now decided to kill me in order to punish my sister. Either way, it doesn’t look good and it isn’t. This time there is a new, youngish, inexperienced, almost handsome doctor who has clearly been called in for this procedure just as he was leaving for
the day. He’s at the bottom of the food chain and has no choice, but that doesn’t mean he’s friendly. He clearly has dinner plans and my stinky elusive pool of pus is holding him up. I sense immediately that he hasn’t done this abscess-incision-drainage thing much, maybe never. The nurse on duty is older and she knows more, but he isn’t listening. I find myself whispering, trying to explain that this is the third procedure and they have all been very painful. I have regressed and am suddenly ten years old, a whispering girl voice pleading for mercy and drugs. He doesn’t seem to hear me, but the nurse does and she scrambles to get some medication into me before late-for-dinner begins. I am weak and infected, and my resistance is gone. It feels like he is shoving a garden hose through my wound, and now noise is coming out of my mouth. I am screaming, truly screaming. The nurse is kind and takes my hand. “Stop. Please. Stop. It’s too much. It hurts too much, hurts. Stop.” He does not pause. “Please drugs. Give me drugs. This is too much. Really. Please. It hurts.” I am screaming, crying, begging. The nurse tells me she has given me ativan. I tell her I know ativan. It will take too long. She shoots more of something into me. I have no idea what it is, and I am sure that in her panic she is overdosing me. Screaming. Stop. Stop. He just keeps shoving the garden hose deeper into my infected center. Deeper and deeper. He might as well
put his hand over my mouth. He might as well tell me not to scream, not to tell. He might as well remind me I am not even really there. It goes on forever, me screaming, him shoving the needle attached to the long thick tube. Then he is done. Abruptly he makes some final adjustments, takes off his radiology gown, and, without even looking at me, walks out. I lie there on the table, stunned, achy, bruised, and raw. I know these bruises. I know this stunned moment after.

All the nurse does is gently touch my hand and I begin to wail.

The next morning and half the day I do not move or speak. I lie in bed, floating in depression, methodically planning my funeral. It is dull and uninspired. Even I would not attend. Suddenly Toast appears in my bedroom. I am irritated. He says it’s Mama C on the phone from the Congo and it sounds important. I know what he’s doing. I put on my best activist voice, but Mama C can tell I’m a mess. She apologizes for even calling, but I can tell she’s rattled. No one has seen the City of Joy building contractor for days and the workers have not been paid. There is about to be a huge strike and it will not be pretty. She needs me to call UNICEF. My self-hatred flips to rage in about half a second and I call Kinshasa. I am shocked at the anger in my voice and
the pitch. I am raging at the institutions with the money and the glory, raging at the institutions that are meant to heal and support the sick and suffering but don’t even see them. Raging at the indifference and trained neutrality of the powerful. Raging at the distracted oncologist, the blaming radiologist, the rock-and-roll catheter surgeon, the sadist-late-for-dinner doctor dude, the bruises all over my arms from overworked and underpaid, bitter nurses. But it’s Sloane-Kettering. And this is the best, it’s Sloan-Kettering—where getting the best means you can’t complain and you have to show gratitude for something you never received.

In my rage my energy returns, and I am back on my feet, back in the ring. Just what Toast had contrived.

I pace my room. I am smelly and ripe. I strip off my clothes. I look at myself naked in the mirror. I put my hand on my new bag and I watch the pus draining out of me. On my other side is my ileostomy bag and my poop. It seems impossible that within a few months all this has happened. I am so very sickly, skinny, but there is some crazy light in my eyes. I am fighting for my life. My bags are holsters. Inside are guns instead of pus and shit, and I pull them fast and aim-bang-fire Sloan-Kettering.

SCAN
STAGES/5.2B

In the twenty years I have known my internist, Dr. Katz, he has never made a house call, so it is a great surprise when he magically appears in my loft. He takes one look at me and tells me I have lost at least thirty pounds and he is seriously worried. He insists I go back to the Mayo Clinic or to Beth Israel in New York, where he is connected. At Beth Israel I see Dr. Koulos, a super skinny man from the Midwest. He is caring, in a serious way, concerned, and to the point. There is something androgynous about his skinniness and that makes the pelvic exam seem less invasive. It is the first exam since the surgery and I am tense, very tense. He is gentle. I cannot even imagine what it looks like up there. Then he brings in Dr. Shapiro. They are friends of Dr. Katz, and I like them both. They actually look at me when they speak. Dr. Shapiro outlines my suggested treatment. He says there is no cancer now in my body.
The treatment is preventative. That is a good thing. He says it is a quickly growing cancer and they need to start soon. They hope my abscess infection will be gone by the end of the week. He says they are still debating whether they will treat me for stage IIIB or IVB cancer.

The words almost knock me off my chair. Stage III or IV cancer? Me?

They broke the rule. I had a rule. No talk of stages. I hate stages. The rule goes back to fifth grade when they decided in our upper-crust suburban middle school to institute a policy that would separate the brainy confident kids—the future Ivy Leaguers, and corporate presidents—from the sad, the slow, and the needy. There were four groups: 5.0, 5.1, 5.2B, and 5.2G. The highest was 5.0. I remember the day we received our assignments. In bold red letters, my card read 5.2B (which stood for
blue
, but I couldn’t help think
bad
). It was as if the authorities had cast me as an idiot for the rest of my life.
Stupid
. There are many words that mean the same thing as
stupid
: unwise, thoughtless, ill-advised, rash, reckless, injudicious. None of them feel bad really. None of them hurt like
stupid
hurts. “Why did you do that? That was so ill-advised?”
Ill-advised
has a gentleness to it, but not
stupid. Stupid
is a word that
gets into you, into your blood and your being. It gets into your cells. It is a violent word, a catastrophic word, a stigma, a scarlet letter
S
, and sadly it was my father’s favorite word for me. Stupid. Eve Stupid. Stupid Eve. How did I make such a stupid girl? Is it possible you are this stupid? Could you be more stupid?

Everything I have done up to now in my life is to prove I am not stupid. I endangered myself many, many times to prove that I wasn’t stupid, and that was even more stupid. I have pretended that I read books I never read and to know things I do not know. I never asked the questions I wanted to ask because questions indicated you were stupid, so in proving I wasn’t stupid I reinforced my stupidity.

The worst group was 5.2B. We were not the ADD girls or children with speech disorders and learning difficulties. No, the organically challenged were 5.2G (gold). I think the gold was an attempt to make them feel special. Nothing they suffered was of their own making. The 5.2Bs were the wrong children, the fat, the pimply, the depressed, the painfully introverted, the ones with behavioral disorders, the broken and oily-haired girls, the aggressive, menacing boys.

5.2B was my prison. In some ways I have never left it. It doesn’t matter how many books I read or write. It doesn’t matter how many accolades I receive. I am forever
marked 5.2B. Now Dr. Shapiro is giving me new marks, new categories, a new B for
bottom
.

Stage 0: The abnormal cells are found only on the surface of the inner lining of the uterus. The doctor may call this carcinoma in situ (again, 0 being where you want to be).

Stage I: The tumor has grown through the inner lining of the uterus to the endometrium. It may have invaded the myometrium.

Stage II: The tumor has invaded the cervix.

Stage IIIA: The tumor has spread to the outermost layer of uterus, tissue just beyond the uterus, and/or the peritoneum (membrane lining the abdominal cavity).

Stage IIIB: The tumor has spread to the vagina.

Stage IIIC: The turmoil has spread to the lymph nodes near the uterus.

Stage IVA: The tumor has invaded the bladder and/or bowel wall.

Stage IVB: The tumor has spread beyond the pelvis, including the lymph nodes in the abdomen or groin.

Stage III tumors have a five-year survival rate of 60 percent. Stage IV tumors have a five-year survival rate of 15–26 percent.

The Mayo team, being more literal, determined me to be IVB (there was cancer in the lymph nodes in my
groin). Beth Israel was seeing me as IIIB. Either way, it was all Bs again. All bad.

There is something so dull and brutal about data.

Stage IVB cancer survivor, rape survivor. But I am not data and I don’t want to be dismissed and judged by categories or grades. Tell someone you were raped and they move away. Tell someone you lost your money and they stop calling. Tell someone you have become homeless and you become invisible. Tell someone you’ve got cancer and they are terrified. They don’t call. They don’t know what to say. What if our understanding of ourselves were based not on static labels or stages but on our actions and our ability and our willingness to transform ourselves? What if we embraced the messy, evolving, surprising, out-of-control happening that is life and reckoned with its proximity and relationship to death? What if, instead of being afraid of even talking about death, we saw our lives in some ways as preparation for it? What if we were taught to ponder it and reflect on it and talk about it and enter it and rehearse it and try it on?

What if our lives were precious only up to a point? What if we held them loosely and understood that there were no guarantees? So that when you got sick you weren’t a stage but in a process? And cancer, just like having your heart broken, or getting a new job, or going to school, were a teacher? What if, rather than
being cast out and defined by some terminal category, you were identified as someone in the middle of a transformation that could deepen your soul, open your heart, and all the while—even if and particularly when you were dying—you would be supported by and be part of a community? And what if each of these things were what we were waiting for, moments of opening, of the deepening and the awakening of everyone around us? What if this were the point of our being here rather than acquiring and competing and consuming and writing each other off as stage IV or 5.2B?

My mind is reeling. Dr. Shapiro is still talking. I cut him off. “If the cancer is already gone, is chemo really necessary?” He says the line, “It only takes one cell.” But won’t there always be one cell? How will the chemo know to obliterate every single bad cell unless it obliterates every cell? If it obliterates every cell, how will I stay alive?

SCAN
INFUSION SUITE

After meeting with Dr. Koulos and Dr. Shapiro, we were taken on a tour of the chemo ward, otherwise known as the infusion suite, which makes it sound like some high-end tea salon or aromatherapy spa. It was not. There were old people and sick people and bald people and dying people, and now I was one of them. I did not want to be one of them. I tried not to stare. Some were reading, others eating, some gazing into space, some dozing as tubes of poison pumped toxic carboplatin/Taxol/fluorouracil/doxil into their bloodstreams. The people who were by themselves seemed especially lonely. But what devastated me was their quiet, sad surrender. Suspended in their isolated comfy chairs, covered in little blankets, they were without protest, being carried to their end. I wanted to scream, “Hello. I see you. We need to talk. We can fight. We are in this together.” I felt like I did in high school
when I tried to organize all the unpopular girls. I called Linda C and Peggy S and invited them to my house. I said, “Let’s face it, girls, we’re unpopular. Let’s form our own group. Let’s take back the power.” (I am not sure I said anything like that, but I did have a plan.) It failed. Linda and Peggy were highly antisocial, which is why they were unpopular, and they had no desire to create an unpopular-girls uprising. They just wanted to survive mean high school and grow up and be someone else. They didn’t even particularly want to be my friends.

The nurse Regina introduced herself. Toast and Lu began taking notes. “We suggest you get a port. A port? Yes, a steel piece inserted in your chest under the skin. We can inject the chemo directly into it. This will prevent your veins from burning and collapsing. Each session will take five hours. You will be closely monitored.” “Does anything ever go wrong?” I asked. “Do people ever have seriously bad reactions?” “We watch very carefully at the beginning to see how your body reacts. If there is any problem, we stop right away.” “But if it’s already in your body and it goes wrong, how can you stop it from killing you?” “No one has died here.”

She didn’t know me. She didn’t understand that my body couldn’t tolerate these things. I would be their first death. Then they wouldn’t be able to tell people no one had died. I would ruin their record. Then they
would have to say, “Yes, one person, one fluke playwright died within minutes of her first treatment. Her body was not disposed toward poison. And oddly, she knew it. She felt it, but she didn’t listen to her instincts. Shame.”