Author Archives: dead yet?

I am grateful that my body has braved almost every degradation cancer has thrown its way, but after months on steroids to control radiation-induced brain swelling (a “swelled head,” as it were), I have become a stranger to myself. I am as large and unwieldy as the balloon-twisted Michelin man. I have a fatty “buffalo hump” on the back of my neck; my t-shirts are strangling me. My full-moon face, the classic steroid “look,” has erased the defining edges of many of my features: Chubby chipmunk cheeks slough into a triple-mogul chin; my mouth has disappeared behind a hanging wrinkle. Bald spots punctuate my mangey crew cut, but my cheeks are covered with a fast-growing downy fuzz. Every morning I encounter this Ogre in the mirror (Shriek! Shrek!) as if I have been bewitched each night.

This transformation was not immediate. In the bathroom drawers are the lipsticks, lotions, blushes and brushes I once used to paint-by-numbers a face I recognized. There was a familiar outline to be filled in. But as the weeks went by, my face expanded into a sea of puff pastry. My eyes, constantly tearing, have receded behind swollen lids. My vision is blurry. On bad days, I look contagious; on good days, sad and sick. A chance reflection in a storefront window revealed a face not at all my own. Hand to glass, I stared back at this stranger, my profoundly surreal body double.

I would like to say that I eventually adjusted to my condition. Just another bump on the Road of Many Bumps, and this bump merely a blow to my vanity. Of course, it is off-putting when acquaintances do a double take as they try and sometimes fail to recognize me. Friends and family offer murmurs of reassurance, but too much reassurance frequently confirms one’s doubts. Strangers look and look away, and sometimes look back again, their gaze as invasive as their upbringing is bad. In line for a movie many years ago, I turned towards the man standing behind me just as he turned from talking to his friends towards me. The right side of his face, which had been hidden from me, was burned down to the bone. All I can hope 30-years later is that I smiled and didn’t look away, but the evidence—personal, literary, cinematic—is against such a generous response. We look away. From every Joker, and from every Hollywood villain from Scarface to Scar whose psychic wound manifests as physical difference.[*] More inspirational stories —Mask, Wonder— encourage us to turn back. To go beyond the superficial and skin-deep and face the world with whatever face we’ve got. Yet every time I see my reflection, I pause in head-shaking disbelief and search for signs of recognition. Who am I without my face?

There is no more intimate record of the self than the story of one’s scars. Mine is a road map of mishaps: Youthful rough housing, the clumsiness of middle age, kitchen accidents, paper cuts, tipsy revels, sober stupidity, the daily assault of sharp edges, the predictability of paper cuts. On my right wrist there is a scar about the size of a nickel from spilling sugar syrup on it while making flan. My dinner guests and I watched in drunken fascination as the sugar, hot as lava, burned an impressive hole.

That scar is still quite conspicuous. As are many of the scars from childhood. Tilting back on a barstool in my grandparent’s beach house (I was repeatedly warned against this, but I was 11), I finally fell over. Two large shards of wood left two jagged holes in my right calf. Blood and globs of yellow fat spilled out of the deep cuts. The clinic “down the shore” sewed me up. Frankenstein’s seamstress could have done a better job. Ditto my largest scar from the colon resection in 2015 to remove the original lump of cancer. It is 6-inches-long and extends from belly button to bikini line. While rooting around in my intestines, my surgeon was happy to discover many inches of “redundant” colon that made fitting everything back together as easy as a DIY plumbing project. Large staples held together a wide incision. The end result looks like train tracks across my stomach. This was no cosmetic fix. This was a durable repair, well-spackled and meant to last. It came with a 5-year (limited) warranty.

When I got my first and probably only tattoo last year, I didn’t think of it as part of “my story,” even though it was etched on my body with a deliberateness lacking from other chapters of this narrative. It is a “commemorative” tattoo, as most tattoos are. They mark a milestone, achievement, event or a person. Mine celebrates an accomplishment: The 5-year survival rate for stage 4 colon cancer is 14% and I had made it into this elite and exhausted group. While a tattoo’s permanence makes its message seem fixed, and there is some expectation that it will always represent us, commemorative tattoos honor the past. When the needle leaves the skin what remains is a memory.

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[*] The British Film Institute, working with the charity Changing Faces and its campaign #IAmNotYourVillain, has stopped funding films that equate a “visible difference,” like a scar or a burn, with villainy.

For about the last 6 months or so, from July 2022 until February of this year, I have been a patient in a drug trial at MD Anderson in Houston testing two brand-new, experimental drugs—on long, long odds—for as long as they might have a positive effect. It was a hard decision: Even as I ran out of options on the traditional chemo circuit, it was difficult to imagine crossing my fingers and betting on the wing-and-a-prayer of an unproven treatment. And yet, I volunteered …like they do in the movies.

90% of Phase 1 clinical trials fail. But mine did not, at least not at first. The drugs actually worked, in profound and almost miraculous ways. Lab results confirmed it. Tumors in my lungs shrank by measurable margins. There was evidence on scans. I could breathe in a way that I had not noticed I was missing. So much amazing air. Doctors smiled and nodded; there was a sense that this new drug was revolutionary.

Revolutionary it turned out to be, as in mutinous. Drug 1, the “burly drug” in my experimental cocktail, gave me body-stomping ulcerative colitis that was life-threatening, so the trial sponsors  discontinued it. I was annoyed that I was not allowed to risk my “health,” (this petri dish of a body actually belongs to me), but Harry and I commit to Drug 2, which seems to bully my tumors into some sort of neurotic failure to thrive. And might do more. I go back and forth to Texas over the winter, hoping that Drug 2 marinates in immunotherapy stew and learns some new tricks. It is that promising and smart.

I become a medical survivalist, a different kind of patient. I tumble out of Sylva at 4 am for a 6 am flight from Asheville to Atlanta; Atlanta to Houston; Uber to the hospital. Thank god for coffee. Without fail, I make a required 36-hour window to get a 1-hour infusion of an experimental drug with my name and DOB on it. Nurses cross t’s; dot i’s, watch over me. They bring me warm blankets, a turkey sandwich and the remote. And then I walk out of MD Anderson and reverse course: Uber; an airport hotel so close to the runway the sheets flutter when the planes take off; Home. The scans show stasis: All tumors are quiet. This is great news. But we hope for a scan that shows the tumors have started to shrink again; I feel sick with hope. Is there not one last favor to call in? Villanelle, are you busy?

In early February, I was at home in North Carolina. In the living room standing by the front window. I am sure I was clucking over the houseplants: The ivy turns brown so suddenly, and the peace plant is perennially suicidal. Looking out along the driveway, I noticed a creeping fog whispering around the edges of my vision. I felt my skull. It had its reassuring form, its ridges were intact, the bones were sharp. I knew who I was, I knew where I was, but I also knew that something had slipped in my head. All that gray matter tucked up under the hood, once solidly substantial, seemed to shift. Memory and references were muddled. Words were strange and unruly. I couldn’t write. The letter ‘g” was oddly confusing. A cold white panic rushed in.

At our local emergency room, the one down the road where the reviews claim there are chickens in the hallways, I get a head CT. In what can only be described as a cruel betrayal and the most cowardly of moves, the cancer has left my lungs to fend for themselves and wandered off on an easier over-cranial road trip. Like a goat, it has rambled over to squat and bray uninvited in my brain. It is the worst news imaginable. It is also impertinent. This is not a barnyard. 

You might reasonably assume that there’s not much more I can write about after this new development. How much thinking or writing or saying is going to get done with a middling-size tumor in the left parietal occipital region, the part of the brain responsible for cognition, language, and sense information? I still have chemo fog from years ago, and now I have brain burps. It is the last insult. It really is.

As the dandelions started to emerge, just a few weeks ago, Cyberknife radiation techs built me an elaborate plastic framework in the shape of my head. They buckled me onto a gurney like a medieval witch, gently stuffed my ears with cotton, battened me down with pillows and covered me with a warm blanket. The state-of-the-art radiation machine is a huge white tube that approaches, recedes and then seems to grind away off stage somewhere to be replaced by another more reassuring sound: Old uneven iron wheels rolling around on wood boards. There is drumming far away as well. Something sighs and hurumphs close by. I open my eyes, face-to-face with an old wooden textile spool, an antique bobbin that I recognize from a dear friend’s workshop. It weaves in on a long rope to hum and chirp and chat. These naps are the best I’ve ever had.

The nurse nudges me awake, helps me sit up. The radiologist reminds me that the steroid regimen is challenging. There will be nights of infuriating insomnia and weeks of crushing exhaustion. And then he waves us down the hall and we are out the door, into the rain and the dark and rush hour. We have no appointments scheduled. We are cut loose—from doctors, testing, blood draws— until my brain heals, and there is every indication that it just might do that.

Our lives return in manageable pieces every day. There is the road we were on before this detour, but that is not the road we are on now. This Spring, we’ll drink the delicious local beer, watch the mountains Green Up, weave ourselves back into the fabric of our marriage and our lives, and pull our friends and family a little closer. We’ll have a bit of a rest. And then we’ll start off in search of the future, imperfect, again.

My freshman year of college, my skinny, sweet boyfriend and I left campus in the middle of the semester to hitchhike from Wooster, Ohio to Boston to hang out with old high school friends. I was in no way ready for college, but a gap year was in no way an option for my parents. So, I manufactured a gap-in-the-semester and travelled 1400 miles to prove to myself that my friends were struggling, like I was. But they were drinking beer, skipping  classes, and generally loving the freedom of college. By the end of the road trip, I thought I could probably stay in college and do fine, too.

I look back on this trip as one of the high points of my life. Although we hailed rides with our thumbs and not an app, we got into cars with strangers who pulled over and offered us a lift. Reckless? I like to think romantic. We walked off to look for America, like that Simon and Garfunkel song, and we found it. There is nothing more beautiful than the skyline of New York City viewed from the cab of an 18-wheeler at dawn. There were reckless moments, of course. It’s America, after all.  Our first ride out of Ohio was a coked-up, dissipated twenty-something in a whale of a car, and oddly formal in a white suit, who was grateful to turn the driving over to us. One truck driver who drove us through New York City started rambling about killing women in Mexico and showed us a gun. We jumped out of the cab into heavy traffic on the Cross-Bronx Expressway, and ran. But then—there was always a “but then”!—we were picked up by a Good Humor ice cream man who took us along on his route before dropping us off on a northbound interstate. “Red” drove his huge 18-wheeler down the narrow streets of campus to the door of my dorm and deposited me back where I didn’t think I belonged, so sick from sleeping rough that I had to take a medical leave for the rest of the semester, which I spent in bed. The skinny, sweet boyfriend dropped out.

Reckless? Well, yes, if the story I told my Mom 20-years later, and her hysterical response, was any indication. Coming of age in the 1980s, I was raised on stranger danger: Random strangers were kidnapping (raping and murdering) children across the country and this crime wave bred panic in our parents. I had been warned, as had all my friends, repeatedly and throughout our lives, that we should not talk to strangers, accept candy or a puppy from strangers, get in a car with a stranger, or accompany a stranger anywhere, at any time, under any circumstances. That strangers are categorically dangerous because they are “not known” seems redundant and “stranger danger,” as it turns out, was largely unfounded.  There is no evidence that hitchhiking was dangerous to either rider or driver. Only about 1% of missing children are abducted by a stranger each year; thousands of children are abducted by a parent, relative or caregiver. Strangers are not always the perpetrator in criminal cases either. Acquaintance rape is more common than an assault by a stranger. When victims are targeted due to race or sexual orientation in apparently random crimes, neighbors or community members can be the culprits. Statistically, there is little danger from strangers; we meet and interact with many strangers every day without incident.

And yet, I cannot embrace the “sharing economy” despite my youthful success at hitching rides, sleeping on couches after Grateful Dead shows, or my research about strangers. Maybe I’m just getting older and have come to the recognize my own vulnerability. Or, I hear that ancient voice warning about strangers. Or, I’ve read the news: Uber, in its first released safety report, admitted that riders—and drivers—had reported thousands of incidents in 2017 and 2018. Female riders were the majority of rape victims; passengers and drivers were almost equally likely to be the victim of robbery or murder. Studies of AirBnb warn that scams, unsafe conditions and discrimination against guests were major issues, exacerbated by non-existent customer service. However, living in Houston without a car, I am totally dependent on Uber. I’m just not all that comfortable with it.

I have taken a lot of Uber rides, most of them positive. I always start a conversation, even with the drivers who look like they just want to drive in silence. I have gotten to the age where I talk to strangers. It’s some middle-aged thing that I don’t quite understand. Maybe I spend too much time alone and I am unable to amuse myself with my phone. Or, I still believe in some now-discarded etiquette that encourages a friendly conversation when you’re alone with someone.^[1] Admittedly, I’m using my Uber drivers as data; when it was 105, I quizzed all my drivers about the weather. Now, I usually open with: “Have you lived in Houston all of your life?” and “Do you like it?” The majority of the drivers are young men of color who have emigrated; the majority of them like that Houston is a fairly cosmopolitan city. People live-and-let-live, it’s quite diverse, and there’s a lot to do: Good restaurants, nightlife, music. Of course, the bad driving of other drivers is a source of mutual interest, and sports is always a good topic since the Astros won the World Series and the Texans are horrible.

There are 2 categories of Uber drivers: The professional drivers who greet you by name when you get in the car and confirm where you’re going. They usually have the music on something innocuous, the air-conditioning is running, and they are good drivers: They stop at stop signs, signal their turns, and let you know if they’ve deviated from the route. They’ve read the list of demerits that will get them a low-star rating and they’re avoiding them. The other category is what I call “Alt-Uber.”  The drivers are always young men. It’s very impersonal: They don’t turn around and greet you, you get in, they drive. They are playing the music they want to, usually at a volume that I want to turn down. They drive a little faster. Sometimes the windows are down because they’ve been smoking. Harry calls the Alt-Uber drivers the “French Uber.” In France, the Uber drivers wouldn’t talk to you, they’d stop for coffee whenever they wanted and smoke cheroots with all the windows closed. You would feel privileged to get a ride at all.

One morning, heading to a pre-dawn blood draw, my Uber pulled up. A small sports car (rare) with tinted windows, and when I opened the door no overhead light came on. It was completely dark and the blare from the radio was expletive-laden rap. The young man driving didn’t say a word, but I got in. One of the safety features that Uber relies on is giving riders the car’s make, model, and license plate number. I also keep my phone on to check our route. I check everything, and then I just trust the app (which I realize, writing this, is akin to believing in the accuracy of pictures on Tinder). The song changed to a sexually explicit and quite vulgar rap about fellatio. Along the back of the rear seat was a row of baseball hats, all of them said: “Women are a drug.” Driving through my neighborhood we passed school buses picking up kids. I said, “I don’t remember having to get up so early.”  My driver, who looked all of 20, said, “The mornings are really busy at my house because I have 7 kids.” So, the conversation took a turn: I said all I remember from school is feeling exhausted by the endless sitting. He told me about all the cool things his kids do: Space camp, and sports and doing and making. I don’t think that making a connection with this father of 7 made this ride “safer” but his blatant disregard for my comfort didn’t offend me or make my spidey sense tingle. The only time I’ve ever felt unsafe was when a driver dropped me off, and he had to come around and open the door because he had “child-proofed” the locks so they wouldn’t open from the inside—that creeped me out.

I’m actually more comfortable riding with the Alt-Uber drivers. I’ve always trusted a little rebelliousness: They feel less corporate so I can shed some of my guilt using a company I hate. Uber only reluctantly revealed safety data. Globally, the company has fought to keep their status as a “platform” that merely links riders with “independent contractors” rather than an employer responsible for its employees; this labor ruse has been struck down in the UK, the Netherlands and in California. Alt-Uber feels closer to the “sharing economy” I grew up with: You can catch a ride and sit in the back like a chauffeured VIP, but it’s still the driver’s car and the driver’s life—and the driver’s music. They remind me of the gypsy cabs, or jitneys, in Pittsburgh. My mother-in-law made frequent use of them. She worked in a Black neighborhood in Pittsburgh, underserved by transportation choices, and when it was time to go home, she’d walk down to the jitney office and wait for a driver. They knew her so well that if a call came in, and she was still waiting, she would be asked to lock up when she left. She lived in a predominantly white neighborhood just over the hill, but it was a 2-bus ride to work, she was in poor health and the door-to-door service was necessary for her.

And now the door-to-door service is necessary for me. I can walk to the hospital from my apartment, but sometimes I just can’t. It’s nice that a stranger will give me a ride.

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[1] _{I have boundaries. I don’t chat people up on elevators or talk to my seat mate on a plane. I don’t talk to the cashier in the grocery store (my grandmother had long conversations with the cashiers, who frequently ended up being one of her cousins).}

Arriving in Houston in July is like getting off the stage at a climate apocalypse boom town. The temperature hovers around 100-degrees, with regular warnings that a combination of factors will make it feel like 105. Always 105. The sun is blazing hot, and while I’ve repeated that cliché my entire life, it is literally true in Houston. The sun is so red-poker, seared-skillet hot, that desiccation seems inevitable. I scan the sky looking to place the glowing fireball; I scan the landscape looking for an escape from it. That old amphibian brain squeaks, “Oh…mistake.” I reach for the water bottle. My skin shrivels. I imagine my bleached longhorn bones strewn across Walgreen’s parking lot. I buy a quart of moisturizing lotion and stay inside where, as Houstonians joke, it’s always 72-degrees.

It hasn’t always been this hot, as my poll of Uber drivers born and raised here will attest. As a child, one said, you could play outside all day in the summer. She shakes her head: Not anymore. Longer heat waves, longer summers, serious droughts, and days and days of extreme heat have increased. People with health issues are at greater risk, of course, but the heat can short-circuit anyone’s physiology: The body doesn’t “rest-and-reset” if the temperature doesn’t fall below 80-degrees after the sun goes down.

I have never missed the country more. I took for granted an evening ritual: The sun slips behind the mountains, the temperature drops, and a breeze rustles the tall hemlocks. Walk out into the meadow as it cools and feel the grass turn slightly damp. Houston, on the other hand, is an Easy Bake oven: In the afternoon, the windows of my high-rise apartment are too hot to touch. Walk out onto the pavement, those “heat islands” of baking steel and barren concrete, and feel it crusting like lava. A grass roots group mapped these islands. One downtown area was 103-degrees on a summer afternoon; twenty miles away in an area with more shade, the temperature was 86-degrees. Their proposed solution: More shade. Plant more trees, create “cool,” light-colored roofs and pavement, nudge more green spaces into the already-built environment. I believe in these practices, and in recycling, green energy, composting, water conservation. I practice these beliefs. I want to do my part to save the planet. But I’ve had to take a hiatus from that, because I moved to Texas.

The state of “go big or go home,” Texas tops the nation in climate disaster stats. It’s a booming economy out here amongst the tumbleweeds, where freedom from government interference and regulation boosters a wild west capitalism feeding on already depleted resources. It’s a state built on this logic: The State Supreme Court banned the banning of plastic bags as unconstitutional; Texas employs more workers in the plastics industry than any other state in the nation. Texas emits more than 13% of the nation’s total greenhouse gases, more than double the greenhouse gasses emitted by any other state in the nation. Texans use more energy than any other state in the nation, despite a catastrophic power failure during the winter of 2021. Of the top 20 counties across the country that will have the most days over 100 degrees in the next 30 years, 16 counties are in Texas. The state’s population, already on a bender, will double by 2050 from 28 to 55 million despite a lack of resources or infrastructure to handle an increase in workers.

Texas shouldn’t be read as a prophecy. It’s not the future. It’s a cynicism drilling deep down into the here-and-now, a model for gutting environmental advances we thought were codified and institutionalized. A proving ground that ethics are easily marginalized, and practices easily erased from everyday life. This is an actual question on Google: Does Houston really recycle? And the answer is not really, or not consciously or conscientiously. Houston is guilty of surreptitiously sending millions of pounds of recycling to landfills. Texas threw away more than 13 million tons of recyclable trash in 2015. The lack of recycling containers in public places is noticeable; there is not a separate recycling bin in my apartment. While some communities have curbside recycling, for some it’s more of a burden. There are 6 “neighborhood” drop-off depositories. All that is required to toss out the recycling is a driver’s license—or a right-to-carry license—in addition to proof of residency.

Guns. Trash. Texas. I am overwhelmed by this place, by its imperviousness to reason, its Smaug-like greed for more that is so much less. I order a “green” Uber, and trundle over to the cancer center whose mission is to make me whole in body and hopeful in spirit. The hospital is always crowded, and we wait patiently in a line that spills out onto the sidewalk. I step across the threshold into the icy air conditioning, sanitize my hands, take a fresh disposable mask, answer the Covid questions, and find my way.

The cancer center is a sprawling complex, with millions of square feet of space across multiple campuses. An orientation class for new patients is encouraged; there is a Pocket Guide that is much in demand. And there are “Landmarks.” A large Aquarium greets visitors to the main building. The Park, with benches and plants and the worst-run Starbucks ever, is down a warren of hallways, blooming under artificial skylights. A garden Gazebo, minus the garden, has been left in the middle of a large waiting room. A Tree Sculpture anchors an information desk. Skyway Habitrails link multiple buildings and you can hustle between them and get in your steps or take a shuttle. I have committed myself to this plasticine place with its heartfelt allusions to the natural world, its dedication to inedible food, and its relentless striving to find a cure. It is my fishbowl, which I share with a pair of sea turtles washed up in Galveston Bay. The young one was dragging its weight in plastic, wrapped around its neck.

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For every office visit, I receive at least one disposable wristband. It’s printed in each office on a thermal printer and then the strip with my name, date-of-birth, and a bar code is detached from the larger piece of papery-plastic which goes in the trash (because of its chemical processing it can’t be recycled, and it might be covered with BPAs). Wrapped around my wrist, it’s attached with a tiny plastic fastener. The nurses work their magic: The knobby end goes through one hole, there is an intricate origami fold, the clasp goes over the top, a snap and I am cuffed for the day. At every nurse’s station is an overflowing dish of these fasteners: Single-use, plastic, ½-inch long strands. Brushed to the floor, crunched underfoot, snapped off and broken at the hospital door as we make our escape in the evening. And then, like ghost crabs, the day’s detritus disappears into the streets, waiting for the next big storm to flush the city into Galveston Bay, a badly polluted estuary connecting greater Houston to the Gulf of Mexico.

Next there is a round of vitals: Blood pressure, oxygen and heart rate levels, my temperature taken with a thermometer covered with a disposable plastic cap, which a veteran nurse can land in the trash with a flick of the wrist. For every blood draw, sometimes more than once a day, there is a disposable tourniquet, a needle vacuum-sealed in plastic, and at least one syringe in plastic wrap, plus the usual detritus of sterile cloth, alcohol swabs and the stretchy bandage wrap woven of synthetic fibers that also escape into waterways. Over-anxious phlebotomists wrap me up like a mummy.

On days that I get treatment, there’s the far more complicated procedure of accessing my port, a permanent IV tucked just under the skin of my chest. It’s a process. A port access kit comes in a sterile plastic container. Inside is a tidy envelope of blue sterile cloth that the nurse drapes over my belly and unwraps like a present to reveal the goodies inside: A dozen or so individually foil- and -plastic wrapped necessities. There is a big needle and its trailing IV tubing, plus sterilizing prep pads, alcohol swabs, gauze, dressing, and syringes of saline. Many syringes. The infusion nurses carry them by the dozen in their pockets and to get my old port up-and-running sometimes requires many saline flushes to clear it out. With each flush a used syringe and its plastic wrap sails into the trash[1]. The IV tubing is a life form of its own: I am draped in yards of blueish line that connects the various drips and immunotherapy meds through the infusion pump to my port. To connect each length of tube seems to require a unique plastic disposable bauble; a green plastic cap keeps the connections sterile.

Everything that has been used to save my life today, about 1-lb of plastic, goes in the bright red biohazard container. I am free to swim away.

[1] A port has to return blood to prove that the vein is open, but mine is a little clotty and it frequently needs cleaning. Every nurse has a trick: One uses the gurney as a tilt-a-whirl and raises and lowers my head above and below my knees till the blood flows. Twenty push-ups against the wall will sometimes do it. Sometimes, a vascular-tech boy is paged. Shy, quiet, all in black, they are the behind-the-scenes fixers. They ignore the droopy middle-aged boob and give the port itself a hard push, then flush it with saline and give the syringe a hard pull and treat my cyborg part like the piece of bad plastic that it is. It works.

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Cancer, Year 6, has been a tough year. Cut loose from the chemo treatments that not only prolonged my life but also structured it, I felt unmoored. I joined a support group for the first time and started this blog to share the bumpy road trip that is my life. On New Year’s Day, I built a shrine on the fireplace mantel by walking around the house and gathering any object that seemed imbued with a spiritual aura. This was a radical departure from my devout atheism, but household shrines are fairly common across cultures, history, and beliefs. They preserve the memory of ancestors, offer a place for prayer and supplication, or keep the household gods appeased with snacks and incense.

My shrine includes: A Mayan human snake effigy pipe. In Mayan mythology, the serpent carries the sun and stars across the sky. At one point in my life this would have been my most treasured possession (for smoking weed). A small blue statue of Ganesh, the elephant-headed Hindu God, is missing one of his four arms, the one that would impart a blessing. Lord of Success and Remover of Obstacles, Ganesh should be prayed to before embarking on any trip to Houston. 

For my birthday, Harry gave me a voodoo doll. Therapists use voodoo dolls in some surprising ways: For employees to skewer while imagining the doll is their boss; for couples to skewer imagining the doll is their spouse. This mock violence restores a sense of agency and justice. I imagine that the doll is the last nurse who tried to put an IV in my arm. He asked me my name and birth date, as usual, told me that his ex-wife’s name was also Elizabeth, and then bent the IV needle on a bone in my wrist. Periodically, I poke my voodoo doll in the hopes that he feels the sharp sting of regret.

Two objects from folklore include a little ceramic figure of a fairy that Harry gave me one Christmas. He said it reminded him of me; it doesn’t resemble me at all. One Christmas he gave me a dead fish preserved in aspic in a glass globe. It doesn’t resemble me either. There’s also a small brass dragon, not quite big enough to reduce the living room to ashes. 

There is a replica of a pre-Columbian ocarina, a type of flute. A headless ceramic figure, you blow through a hole at her feet and there are two finger holes; the sound is quite pleasant. Like so many of the tchotchkes that clutter our shelves, Harry bought this one at auction decades ago. He can remember that in the same lot was a tiny iron pug, now on top of the antique dental cabinet by the window, along with 2 metal candlewick snippers, an old pair of binoculars, and a letter opener in the shape of a robin.

Finally, there’s a wood figure of a town crier that once belonged to Harry’s mother. Town criers are popular as historical re-enactors—you can even hire one in England through the Ancient & Honourable Guild of Town Criers.  They were easily recognized by the repetition of “Hear ye, hear ye, hear ye” or “Oyez(x3).” Like Twitter, they kept a semi-literate public up to date on the latest gossip, delivered proclamations, spread the news, or sounded the alarm of, say, a coming plague.  Like the crier, I sometimes ring a large brass bell, a “hear ye” to the universe so that it pays attention to my message: Namaste. The ringing of a bell three times is a common ritual to mark the end of chemo treatments.

Our home, with its clutter of nominally sacred objects, has perhaps suffocated our household gods. Or, perhaps, my reverence for these objects has become haphazard. They may soon be returned to their regular spots on various shelves, returned to the anonymity of dusty tchotchkes. To imbue objects however ordinary with some spiritual significance requires at least a nod to a higher power. I have nodded in the direction of belief before; I married a Catholic. While I didn’t convert, I did go through Pre-Cana, the Catholic version of “marriage prep.” I think it was important to my first husband’s father, who was quite devout, that we marry in a Catholic service. The priest came to our wedding from another reception and said, as we joined hands, “My beer friends, we are gathered together….” Obviously, the marriage didn’t last, but there is a higher god and it is beer.

When we first moved to the South, I joined a local church, in part because its liberal politics were inviting, and it was a source of community outside the University. The other parishioners were only somewhat welcoming. For one outing we were invited to meet at the church to carpool, but everyone got into cars with their own friends and we ended up driving to the baseball game alone. Yet the sermons were brilliant, delivered by a priest truly committed to inspiring social justice, and I loved the ritual of kneeling and standing, kneeling and standing. But the story of Jesus is not one I believe in, its repetition is not comforting to me, and my loyalty lies elsewhere. Just this past December we bought our first menorah. It was a temple menorah and not a Hanukkah menorah, so we celebrated Hanukkah for 7 days rather than 8. The warm glow of candles made up for what we lacked in ceremony.

If not belief than what? During my first round of chemo, I found resolve in Band of Brothers and The Pacific. These were stories of suffering and endurance that inspired me to keep going: You get up, slog through mud, face your fears, do it again the next day. I have watched Saving Private Ryan a dozen times: You get up, slog through mud, face your fears, do it again the next day, bitterly searching for “Matt Damon” who, once found, goes on to live to a ripe old age.

Tim O’Brien’s story, The Things They Carried, catalogs the artifacts carried into battle by soldiers in Vietnam. It’s a tribute to the power of necessary objects. The men carry what is required: Rifles, ammunition, tents and supplies. They carry what they need: One soldier carries extra morphine; another carries a New Testament. They carry memories and fantasies: The Lieutenant carries his girlfriend’s good luck pebble in his mouth, hoping that she’ll love him but knowing that she will not. Photographer Thom Atkinson in a photo series called “Soldiers’ Inventories” researched and photographed what soldiers have carried through the long history of war, starting with a military kit from the Battle of Hastings in 1066. What can be carried? A shield, a helmet, an axe. A hacking jacket; a tintype of your wife; needle and thread. All soldiers, over the course of a thousand years, carried a spoon.

What I carry: A token from the day Harry and I got engaged. A frayed and faded organ donor card witnessed by my college boyfriend. His looping signature, immediately recognizable after 40 years, brings back warm memories. Every 4^th of July, old friends of Harry’s hosted a great street party just a few blocks from our house in Pittsburgh. Forehead Charades, or the Sticky Head Game, was a big part of the day. Dozens of us walked around with 3 x 5 cards pinned to our backs, our foreheads too slick in the July heat to hold a sticky note. I kept Harry’s clue from one year. His card says, “of Grace,” which is not a celebrity, object, or historical event, and no one guessed it, this state of being or belief that remains a mystery.

Moon shot. Noun. A high-velocity home run in which the ball reaches an extraordinary height. Wally Moon, who was a major league outfielder in the 1950s and 1960s, was a left-handed hitter. His shots would pull to the right, and when he was playing for the Los Angeles Dodgers wouldn’t clear the stadium’s deep 440-foot outfield. By perfecting an inside-out swing, he figured out how to send the ball sky high, up-and-over the closer left field bleachers. His “Moon shot” helped the Dodgers advance to the 1959 World Series.  He remembered that day for the rest of his long life: After playing for 11 years, he retired in 1965, went on to coach, and died in 2018 at the age of 87.

Moonshot. Noun. A very challenging and innovative project or undertaking. In 1962, President John F. Kennedy, who had already floated landing a man on the Moon to Congress, delivered a speech to drum up public support at Rice University in Houston, Texas. Kennedy flatters Houston, a “city noted for progress,” and Texas, “a state noted for strength,” but not the zeitgeist: “an age of both knowledge and ignorance” that lacks the will to take advantage of all that science and technology have to offer. Sceptics ask, “Why go to the Moon?” Kennedy answers: Why attempt any great conquest of land, sea or sky? Because we are Americans, and we do things “not because they are easy, but because they are hard.” Otherwise, he joked, “Why does Rice play Texas?” Why go to the Moon? Because we choose to.

What could go wrong?

The Moonshot. Noun. The act or procedure of launching a rocket or spacecraft to the Moon. “Houston.” That was the first word spoken by Neil Armstrong when the lunar module touched down on the moon in 1969. Buzz Aldrin had already mumbled a few words about turning the engine off, and Armstrong wouldn’t take his famous walk and make his famous “one small step” speech until about 4 hours later. “Houston” was really just a “Hey” to Mission Control, a shout out to the small blue marble down below to see if someone was listening. Everyone was.

Kennedy did not live to hear the part of the conversation between Armstrong and Houston— “Tranquility Base Here. The Eagle has landed.”—that confirmed his goal was realized.  He was assassinated in 1963, in Dallas, Texas, a city noted for a grassy knoll and conspiracy theories.

The Apollo 11 mission was followed by Apollo 12, whose communications with Houston lack the gravitas of Armstrong’s. Instead, the three astronauts sound like star-struck teenagers: Alan Bean calls everyone “Babe,” and Charles Conrad, trying to stick the landing, gleefully confesses, “Hey, we flew right by the crater, Houston.…”  When we think of the Apollo 13 mission, we think of Tom Hanks telling Houston that something has gone amiss. “Houston, we have a problem,” is an understatement for the near catastrophe that followed. Mission Control fixed possible carbon monoxide poisoning by rigging a cleaning system of cardboard and tape. We call that American ingenuity.  

Moonshot. Noun. A very challenging and innovative project or undertaking. Vice President Joe Biden returned to Rice University in September 2016, 54 years after Kennedy, to promote the Cancer Moonshot. Houston’s MD Anderson Cancer Center is at the forefront of oncology research. Biden’s son Beau was treated there for brain cancer before succumbing to the disease in 2015, and the Moonshot is named for him. Biden talks about Beau often, at perhaps inopportune times, but remembering his family’s tragedy—the time spent by his son’s side talking to doctors and learning as much as he could about the disease and the research, and the realization that his son’s diagnosis was a death sentence—helps him process his loss. It also fuels a rare eloquence. Speaking about the possibilities of the future, Biden linked Kennedy’s challenge of flying to the moon to the challenge of finding a cure, a challenge we are “unwilling to postpone and one we intend to win.” But Beau’s death has also made him impatient with both the past and the pace of progress. Nixon’s “War on Cancer,” the National Cancer Act of 1971, was well-intentioned, said Biden, but it is now 45 years later—and 1 year too late—and its goal of a cure has not been realized.

Moonshot. Noun. A long shot. The clinical practice guidelines for colon cancer includes a flow chart that plots cancer stages and treatments. This chart is the “if/then,” “this-or-that,” “either/or” road map of a patient’s future: Surgery or radiation; this chemo drug or that one; if the cancer progresses, then a clinical trial…or hospice. Nixon mandated that cancer research make its way more quickly from the test tube to the patient, and by 2014 most patients had access to a clinical trial in their community. The success rate of clinical trials, however, is quite small.  

In Atul Gawande’s Being Mortal, he warns against the long shot: The endless parade of treatments that have little chance of extending life, offered because doctors as well as patients engage in wishful thinking. The failure of the long shot can prolong suffering with little to show for it and leave families and loved ones feeling guilty that they somehow missed a miracle.

Moonshot. Noun. A very challenging and innovative project or undertaking. Cancer Moonshot, Part Two. In February 2022, without much fanfare, President Biden re-booted the Beau Biden Cancer Moonshot Initiative with a new goal of reducing cancer deaths by 50% in the next 25 years. The Moonshot of 2016 had lofty ambitions: Investing in immunotherapy and precision medicine research, collecting and mapping tumor data, and minimizing inequities in cancer screenings and care. It has had notable successes: 3,500 potential treatments are in the pipeline, a 75% increase since 2015; 240 research projects are ongoing; and, there is a clunky but searchable database of clinical trials. In his remarks, Biden rambled off script to talk about Beau. Seven years after Beau’s death, his dad like many of those left behind, still wonders why he didn’t know what to do and why there wasn’t anything to do. The Biden’s had unlimited resources and access, yet like many of us they were stymied by bureaucracy. His aside about not being able to get a scan sent from one hospital to another struck me in its familiar head-exploding idiocy.

Moon-shot, adj. Obsolete rare; illuminated by moonlight. I stand in my yard looking up at the Moon. That men once walked across it seems impossible. But Houston, we have a problem. And the solution is a long shot.

I choose to go to the moon.

Early on the morning of Valentine’s Day, 2016, just a few months after my diagnosis with Stage 3 colon cancer and just a few weeks into my first round of chemo, my husband dialed 911. I heard him on the phone but I was too sick to pay attention to what he was saying. In my delirium, I wondered for the hundredth time how I had ended up here: Splayed at the foot of the bed but failing yet again to make it to the bathroom.

I heard the EMTs arrive. I waited as two young men wrestled a stretcher up the narrow staircase of our house. The tall skinny one, the one in charge, called me ma’am, put a hand under my arm, loaded me onto the narrow gurney, bundled me in blankets and strapped me in. The short one was no more than a boy, as wide as the doorframe. He was the muscle. They hefted the stretcher down the stairs. How clever that it folded like a chair, the better to navigate the strew and clutter of our lives. Their professional chatter and the explanation of everything they did glazed over the fact that I was nearly naked, unkempt and stinking, like our house that smelled of shit and vomit.

Right then I vowed to move to a house with wide hallways so that my deathbed might be more easily wheeled to the ambulance.  The rose bushes outside the front door were overgrown and pricking. The twigs and leaves on the walk clogged the wheels of the stretcher. I vowed to keep up with the yard work, but cancer stops you where you are, with an unmown lawn and an unclean house, unread papers, unanswered mail, and an unexamined life.  Everything that should have been done the day before the disaster remains undone; Everything that should have been said remains unsaid.  I wasn’t surprised to see my husband at the hospital a few minutes later, but I wish I had said to him: Don’t follow me down this road. 

The past 3 weeks had been a blur of diarrhea and throwing up, and many trips to the doctor. The doctor told us that chemo came with side effects, and some people suffered more than others. Most of the nurses told us we could manage this and gave me drugs.  One nurse shook her head and said, “Hospital.” But we went home. And then things went horribly wrong. Chemo is poison, and it was poisoning me. I became dehydrated and toxic, but I could not stop: 6 months of chemo might save my life; 6 short weeks would not. I wanted to make any life-changing decisions myself: Hospital? No hospital. Hospital? No hospital. One day you have a partnership and think you’re the boss; the next day, Valentine’s Day, your partner decides for you: Hospital.

 At the small rural hospital in our town, IVs were ordered, and my oncologist paged. He admitted me to the larger hospital, 45 minutes away in Asheville. Watching my husband follow behind the ambulance, I wondered how I came to be here, a reluctant transplant in Appalachia, actually living in a place I had never wanted to visit. Looking out the back window at the unspooling highway reminded me of every summer of my childhood, sitting in the rear-facing third seat of the family station wagon while my mother drove us from Maryland to North Carolina to spend weeks with my grandparents in these mountains.

We would go visiting. We would go for long drives, and visit gravestones, farmland and old homes that were once in the family. We would visit kin still living but nearly forgotten. We would drive miles on winding roads to overlooks and look at crags and balds.  We would gather for picnics in state parks and eat fried chicken and lemon cake.  While my cousins and I re-introduced ourselves creek-side and reclaimed the old divisions of “Yankee” vs redneck, my grandmother and her sister would catch my mother up on all of the latest news. Me-mom and Aunt D had 50 first cousins, and a recounting of the births, deaths, marriages, divorces, drinking habits and arrests took most of the afternoon.

At my grandmother’s 75^th birthday party, many of these cousins visited from “down home” and I met them for the first time, some of their accents so thick that you could hear the traces of a Scottish homeland abandoned 200 years before. My mother and I looked at each other: We should write down all of their names! And get Me-mom to map a family tree! We turned our attention to other things, and away from what we had in common. So much of what she shared, we lost.

My grandmother died of colon cancer at 84. She outlived my grandfather, who she adored, by nearly 25 years.  Granddaddy died at 60 from a diet of cigarettes and red meat, which was ironic after surviving so much: The Depression and two world wars. Flu. Polio. Poverty. As a child, he worked in a meat packing plant alongside his mother and 3 siblingsand dropped out of school to work full time.  He was a butcher, and his hands and arms had the texture of petrified wood from years of working in the cold freezers. When my neuropathy was bad and knives became a dangerous tool, I remembered his hands railroaded with scars, and relearned every day the lesson of keeping bone from blade. I was a chubby child, but he could hold both my wrists in one hand and lift me easily. And tickle me until I nearly peed my pants. One summer when we were at the amusement park in Myrtle Beach, Granddaddy took me on the old wooden roller coaster. I must have been much too young because the safety bar did not hold me in and as the coaster hurtled down that first hill, I rose out of the car. Airborne. Flying. His big hand reached out, grabbed my waist and pulled me back to safety.

I had outwitted death once; I could do it again.

At the bigger hospital in town, I am whisked up the elevator to a room of my own. IVs are hooked up and would drip continuously for 7 days. I was a fall risk so if I had to use the bathroom, which I did frequently because it was colon cancer, I had to call a nurse, or an air raid siren went off when I left the bed. I was on the ward of the infirm and the sleepless where the nurses came every 20 minutes, yet when I rang for a nurse, there was never one to be found. One option seemed to be to soil the sheets, but there was no guarantee that the sheets would be changed; they were, as it turned out, only changed once that week. The other option was to master the obstacle course set up by my night nurse: Swing my legs over the side of the bed and stand up; grab the IV pole and bring it with me. Lurch for the end of the bed, then for the bathroom door and dive for the toilet. Close the bathroom door—or not. Every day I worked with a physical therapist to rebuild my glute muscles so I could get off the toilet, just in case I found myself alone. 

When word came down that I would be in the hospital for a while, my husband went home to check on his business, check on the cats, check back into the life we so suddenly abandoned. He brought me some clothes: A pajama top, yoga pants, a blouse I wore to work. He apparently stood in my closet and failed to imagine what I looked like every day. It takes him weeks to notice a haircut. Should I go missing he would have a hard time describing me to a sketch artist.

But he’s showing up for this, against the odds. Men leave women with cancer at astonishing rates: In studies of “partner abandonment,” the divorce rate is 20-percent if the woman is the patient. If the man has cancer, it’s around three percent. You might think that to leave your cancer-ridden spouse is a decision that invites a public stoning, but it only marks you as a coward not a criminal. John Edwards, Newt Gingrich and John Lackey are infamous don’t-caregivers. I like to think I would be a stand-by-your-man kind of woman, that I would honor the vows we never thought we’d face: For worse, for poorer, in sickness.  I’m afraid I would betray my sex; I would get out of this myself if I could.  But not my husband. He brings me adult diapers with flowers on them and tells me I look cute. And then he drives me home.