later that the cells simply fell apart when pathology tried to look at them. But I don’t understand, not really. Are we our own unique beings or not? Science would suggest we are not. We exist within systems, networks, the matrix of family and friends, patterns. We are not alone. We are all connected, even on a cellular level, across time, space, and logic. Perhaps it is individuality that is the myth.
6
AGNES IS THE COLOR of fear, of orange cones and emergency vests, a color to startle, to wonder at the point where cancer has become the rule, not the exception. Every new diagnosis surprises me a little less. It’s cancer. It’s always cancer. It is fall in Minnesota and our days are getting shorter. I feel time as physical oppression. I am so angry in these days, my world a flare of bright orange. Anger is a secondary emotion, they say, a reaction to fear or vulnerability or frustration or injustice, an active reaction, rather than passive, and I walk the halls of the house, my belly simmering with something less than rage. The heft of cast iron in my hands feels right in a way my mother’s light Club aluminum does not.
I am angry at the urgency they feel in giving my mother six months of destructive chemotherapy but not being worried when her blood counts are too low to receive treatment. For what feels like her oncologist forgetting she’s a human being with a brain, with feelings, and this is something I will not ever forgive him for. We brush aside his poor bedside manner, as that’s just the way he is, and my fingers tingle with resentment. For the subtext of You have cancer and you’re getting chemo—what do you expect? For the nursing staff telling her, again, in voices that sound incredibly patronizing to my ear, If your temperature gets to 100.4, you have two hours to get to the ER; make sure you wash your hands; make sure you avoid sick people—or on her last visit, where her platelets were too low and her white blood cells were so scarce they could be individually counted, the nurse told her to be extra careful with shaving—and made motions with her hands like she was shaving her legs—and I could feel my brain seize. Look around you, nobody here has hair, my mother also clearly has no hair, and you’re telling her to be careful shaving her legs?
My mother’s friend A., recently diagnosed with lung cancer, sent an email where she reported with amused exasperation the frustrated and angry reaction of her son to not knowing more after her recent CT scan, and A. reminded him that she was pleased with the report, that she was—like my parents—perfectly happy to accept things as they come. Oh, my mother said to me when she read the email: There are two of you! My mother says she never felt patronized, or felt that she was treated poorly, but I felt it. Deeply. My father went so far this morning as to link such acceptance to maturity, Not, he hastily—but not hastily enough—added, not that you’re not mature. At other times, he’s suggested that perhaps I’m simply searching for somebody to be angry with. This might be true. I have the luxury of questioning these doctors when my parents do not. They need to trust that the oncologist knows exactly what he’s doing, because if they cannot trust him, the consequences are unfathomable. My middle sister is a nurse: we are a family that trusts our medical professionals. We trust people who have risen to the tops of their fields to know what they are doing, whether they be cabinetmakers or world-class doctors. That is the way we function.
Maybe it’s the job of children to bear emotion our mothers cannot voice. Maybe it’s a role reversal none of us are ready for, when the children feel they must step in front of danger, into the path of those who would take advantage. I don’t know where my distrust has come from—maybe the corporate takeover of education and medicine, the destruction of natural resources for the sake of profit, a political philosophy that calls business the savior of whatever ails you. We watch a pharmaceutical company jack the price of an AIDS drug or my nephew’s EpiPen simply because they can. Maybe I feel more strongly the outrage of my mother being told to use Glad Press’n Seal wrap when she puts lidocaine on her port before she leaves home for treatments, rather than the medical-grade Tegaderm she was originally given. Our mothers, using kitchen wrap for medical purposes. Maybe, as a cook, I should appreciate the ingenuity, but I don’t. I really don’t.
7
THEY BROUGHT FOOD ON Tuesdays, because chemo happened on Mondays. Later, when my mother was regularly hospitalized for those 100.4 fevers, they rang the bell on Thursdays, too. The beeps and bells of the house were startling in such silence—the tri-beep of the thermometer a clear signal from down the hall that my mother was awake and checking for fever, the doorbell that set the dog to barking. Taking my mother to the emergency room became so commonplace in those days that we had a bag packed and ready near the door with her noise-canceling headphones, face masks and eye masks, her Kindle charging cords, and everything else she would need for an overnight stay. It was a mantra in those days—you have two hours to get to the ER, no excuses. The chemotherapy destroyed her white blood cells as well as her neutrophils, the baby white blood cells, and she was incredibly susceptible to infection. It was a terrifying way to begin treatment.
Our friends balanced hot lasagna, cold vegetables, yeasty bread that made bright steam in the dark winter air. They brought pork roast, beef roast, squash, potatoes. They rang the bell and offered their first vegetarian-cooking efforts, unnecessary apologies turning breath to laughter as they stood in the doorway. Nobody tells you how lonely cancer is, the fear of it hardening your skin into a shell as you watch your mother suffer with her bellyband after surgery, knowing that even when she can bend to tie her shoes, when she can take a shower without supervision, when she is permitted to lift her two small grandchildren, it will be less of an achievement and more a signal to proceed with the next terrible stage of treatment. When they talk about the cumulative effect of chemotherapy and radiation, they don’t talk about the cumulative effect on the family: each stage takes longer for us to recover from, too.
In Greek, the practice of hospitality is called xenia, but more broadly it is the practice of showing kindness to strangers who appear on your doorstep and may or may not be gods in disguise. It is the hidden face, the unknowing, that is important: It does not matter who rings your doorbell. It could be anyone, or Anyone. For the Greeks, their religion now largely lost to myths of gods and Titans, xenia was about navigating a world where their gods did not live lives separate from them, a world where we find the divine in an ordinary salad of cucumbers, tomatoes, and onions on a Tuesday night, a moment where the individuality of cancer meets a community who will not let you walk this path alone. Maybe community is a myth, in the way that fetal microchimerism makes me wonder if individuality is a myth. Can it be Schrödinger’s tumor, both and neither? Is that why we need myth, why we need metaphor, to cover the space of uncertainty? Why we need to consider the Greek practice of xenia, hospitality to the stranger who may or may not be the divine in disguise?
8
HERE IS WHAT IS not normal in this new world of cancer: I am not afraid. Not yet, at least. I am fully in determination-mode and my anger is not coming from a place of fear. My mother’s oncologist at the Mayo Clinic says, “Disease wants to take tomorrow. Don’t let it have today.” But the truth is that we have not gone through cancer like this with anybody else in our family, which alters my perceptions, sends me to find color in carrots and cast iron because my fingers tingle with the need to do something. My maternal grandfather was diagnosed with leukemia in 1973, on his twenty-fifth wedding anniversary, when he bent to brush his teeth and hurt his back. I imagine that the conversations around cancer were much different in 1973. I remember the threat of losing my grandfather being a normal part of my growing up, but maybe because it was normal, we didn’t have these conversations about cancer, about mortality. He died in his sleep in 2006. I’ve come to understand that my lack of fear right now is because my mother’s doctors consistently refer to her as “cancer free,” which gives us a false sense of security. I don’t think about how unfair it is that my mother has cancer, because she doesn’t have cancer—she’s “cancer free” and the threat of losing my mother to cancer simply does not exist in these days—and then
