Psychopomps & Grim-Reapers; My Ongoing Journey with Cancer Surveillance
Just one week ago I was having daily tea with the grim reaper. Psychopomps swirled about me as I made my way through the day, ready to guide me from the land of the living to the land of the dead. I could sense that these guides were not there to judge me, but only to act as impartial ushers meant to accompany me from one place to the next. They sat perched on my shoulder as I washed the dishes and then skipped along beside me as I hiked the local trails. No matter how fast I scuffed my feet through the dirt – as if trying to scrape them from the soles of my shoes - or leapt from one boulder to the next in a desperate bid to outrun them, I simply could not shake their presence. They accompanied me during my commute to work, listened in as I trained my new hire, and then sat across from me at the dinner table. They observed my interactions with my children, eavesdropped on my conversations with friends and family, and then watched as I disrobed to shower and then again as I stepped from the bath to towel off.
I studied my reflection in the bathroom mirror. Forty-eight years old yet still blessed with a relatively youthful body. A body that has deep wells of energy – enthusiasm, even. Could it be true, I wondered? Could I really have cancer? Could I be dying?
How patient and calm these psychopomps were. How self-assured. They felt no need to rush me through the rituals of my day, no chaffing impulse to leash me up and then drag me by force. They were happy to simply hang-out with me. Take your time, they seemed to say, we’ll get there eventually. These guides were the equivalent of an incoming tide that hovers for a moment at the mid-water mark, knowing full well that reaching the high-tide line is absolutely inevitable, if not a fact that has already been accomplished a million times before. So why rush? We might encounter an interesting seashell along the way, or have the chance to sup with an inquisitive seal, or play for just a moment in a bed of sea kelp.
Like mist, these psychopomps were everywhere and nowhere. Impossible to capture or trap, yet just as impossible to sidestep. They lived in my head, in my breasts and in the pit of my stomach. They danced upon my shadow as I walked to the grocery store and then tucked in behind me while I slept. One arm draped possessively around my waist, they would extend a soft palm and turn my cheek toward them with a gentle reminder should I dare to daydream or, god forbid, future plan. The vanity! As if I could afford to daydream, as if I would be granted a future!
Someone recently told me that cancer surveillance is both a blessing and a curse. Based on my own experience, truer words have not been spoken. Because of my family history (a sister who died at forty-nine from breast cancer and a father who, at eighty-two, has thus far evaded three cancers) and also because of my own body’s chosen expressions, I am under strict bi-annual cancer surveillance. Every six months I undergo either a mammogram and an ultrasound, or an MRI and an ultrasound. Based on what my breast surgeon, the incomparable Dr. Kristi Funk of the Pink Lotus Brest Center, explained to me five years ago when I went in for my first baseline mammogram, it looks as if I have breast cancer - in my left breast especially, due to the swarm of milky-white calcifications that have made their home there.
The calcifications are quite pretty, actually. I saw an image of them when they were first detected – well before I met Dr. Funk, during that time when an impersonal, if not cruel radiologist declared, before I had even been biopsied, that I was absolutely going to have at least one breast removed and that I would be smart to gather my loved ones about me. You know, to start making preparations.
I was so overcome with fear at the time that I thought for sure I would pass out. I was trembling, sweating, struggling to keep my head above this tidal wave of news that she delivered as if it were all rather par for the course. She jumped from one digital image to the next, each one flickering to life on the computer screen. I remember thinking, as vomit threatened and desperation cart-wheeled, that the inside of my breast was really quite pretty. Like the Milky Way, studded with bright, twinkling stars and galaxies, suns and planets. My breasts looked full and supple – much more so on the computer screen than in real-life, where they are nothing if not petite.
By the grace of God, a preliminary biopsy revealed that my star-studded calcifications were actually benign. A more detailed wire biopsy corroborated that fact (a surgical procedure necessitating general anesthesia that involves inserting a long wire behind the nipple and taking out a whole swath of cells). I did not, in fact, have cancer. By some incredible stroke of fortune, I had slipped through the cracks, like a worm that has somehow wriggled free from its hook. I landed on the ground with a plop and scurried into the nearest corner, as quick and fierce as a spider that has been rudely shaken from its web.
Fuck you! I shouted from the safety of my corner. Fuck you for scaring the wits out of me! Fuck you for shaking me like a rag doll!
And thank you, too, I whispered. Then my legs crumpled and I took to the knee, prostrating myself toward a god I didn’t know I worshipped. Toward a god I hadn’t known I needed. Thank you. And thank you again. I wept tears of gratitude and then, over the course of the next few months - as if learning to walk all over again - I returned to my life and to the land of the living.
Fast forward through a blissful four-year hiatus of benign reports and one month ago I landed right back in the exact same spot. But this time it went a little differently. My MRI findings were perfect – a beautiful, crystalline report. No breast cancer detected. But then during the routine ultrasound that followed the MRI, Dr. Funk found a very fat lymph node in my left armpit. Not misshapen, she said, so it doesn’t look like cancer, but since you’re here and this is why you’re here, I think we should biopsy it. Just to be on the safe side.
I nodded my consent and inhaled as she readied the needle, willing myself to a steady position. It’s okay, it’s okay, it’s okay, I counseled myself. You’ve got this. No need to freak out, no need to worry. All very routine.
She took the biopsy and I went home to wait the results. It was a Thursday and the report likely wouldn’t be complete by Friday afternoon, so I would have to wait the weekend. We’ll call you on Monday, Tuesday at the latest, she said.
I busied myself. I attempted to live my life as usual, but a door had opened and a shadow had crossed the threshold. I did my best to ignore it. I tried my hardest to give that shadow no credence. Still, it flickered there in the corners and stepped forward - emboldened in those inevitable moments when I would drop my guard. Like a balloon that dangled from a helium tank, it usually looked deflated and shapeless – a pathetic sack of nothingness. But then, according to some sort of internal alarm clock, it would slowly inflate and take shape, like a ghoul or a wraith. This, I thought, is what it means to be haunted.
Tuesday came and the phone rang. It was Dr. Funk herself, calling with the results. Never a good sign. I’m so sorry, she said, but the biopsy came back as suspicious for lymphoma. We need you to come back for surgery. You’ll have to go under general anesthesia again. We need to excise the entire lymph node so that we have a larger sample for analysis.
Death pause. A swarm of mosquitoes in my ear. As if I had been staring at the sun, stars began to pirouette in my eyes.
But lymphoma is a very treatable cancer, she continued, especially when you catch it early. Some people don’t even need chemo. Even in those people where it goes undetected, it can smolder away for years and they are none the wiser. I felt like she was a boyfriend breaking up with me, trying to console me with the ridiculous excuse that I’m absolutely fine just as I am, that I’ve done nothing wrong – that it’s him, not me.
I couldn’t listen anymore. I couldn’t hear a word she was saying. My brain simply shut down.
…nurse will call you to schedule the surgery…don’t worry too much…we’ll be in touch. I heard her say goodbye. Standing in the kitchen, I held the phone in front of me and, dazed with fear, tapped the End Call button. I looked around. My boyfriend, Tony, was out in the driveway with a locksmith studying the broken end of a key that I had snapped off in our brand new trailer. He stood with his hands in his pockets, the sun beating down on his head.
A very normal thing to be doing, I thought. How lucky it is to do a very normal thing in the middle of the day without a suffocating fear that has hitched to your back. Why can’t I be Tony? Why can’t I be the locksmith? What do I have to do to be out in the driveway with the sun beating on my head, looking at a trailer lock without any sense of death approaching? What debt do I have to pay? What sacrifice can I make to get back to the comparative bliss of daily chores and nuisances?
***
Physiological expressions of stress are nothing short of remarkable. Our brains are incredibly powerful – both creative and destructive, life-giving and life-taking. The gamut of stress expressions can range from insomnia and indigestion, to weight gain or weight loss, to skin eruptions or even to strokes and heart attacks. Historically, my stress has expressed itself through insomnia and migraines. This time, however, it took on a different form, expressing itself instead with dizziness and a perpetually shifting axis. Like I had chronic vertigo. Out of nowhere, my field of vision would minimize to a pinprick, the earth would tilt beneath my feet and a dull, hazy sound would fill my ears, as if I the room had suddenly filled with radio static.
While at work I was sure that I would trip down the few steps that led from my office to the reception area. While showering, no matter how cool I adjusted the water temperature, I would have to slump against the wall so that I wouldn’t collapse. Once, while gardening, I simply sat down in the weeds so that I wouldn’t tip forward and smash my head on the concrete sidewalk. I began to doubt whether it was safe for me to drive, go hiking alone in the slimly populated hills or practice yoga. Surely all that downward dog and tilting from head-up and head-down positions would kill me right there on the spot. Scotch, my very favorite treat, was out. Not a slim chance in hell I could survive hard liquor. So I took to the couch. I took to soft pillows and blankets. I decided against going out to study the night sky, when my face would be dangerously tilted toward the heavens.
And so my life started to shrink, and I didn’t even know yet if I even had cancer. What in hell would happen to me if it turned out that I did? How could I possibly survive that bit of news? How do you slay the dragon when it enters the room if you cannot even withstand the sound of its approach?
Once again, I was reminded of my awe for cancer survivors. They had to be tough as nails, I thought. Brave beyond brave. Courageous beyond courageous.
***
Surgery day came and my ride-or-die girlfriend drove me to Los Angeles for my “left lymphatic excision with inter-operative ultrasound” playdate with Dr. Funk. Don’t get me wrong – I am not using the term “playdate” in a flippant manner (I just have to find humor wherever humor can be found). On the contrary, I absolutely adore Dr. Funk. She’s razor-sharp, resourceful, compassionate, committed to her cause, wields a knife like a master itamae sushi-chef and is beautiful to boot. In short, she’s one bad-ass, mother-fucking femme-vivant (if I may coin the phrase femme-vivant, as Dr. Funk caters to life; there is nothing fatal about her, though she does sometimes deal in fatal cancers). She has provided top-notch medical care to the likes of Angelina Jolie and Sheryl Crow, to say nothing of your average, run-of-the-mill Janes (heroes in their own right, even if they aren’t Hollywood A-listers).
When I first arrived, Dr. Funk was nowhere in sight. Why would she be? It was only 6:00am and I still had to register, complete what felt like reams of paperwork (including a medical directive), disrobe, don a hospital gown and then wait ingloriously in a gurney that was stashed behind a flimsy curtain in a chilly pre-op room. Next, I had to meet my nurse, have my vitals recorded, get hooked up to an IV and then, last but not least, consult with the anesthesiologist. He was a man at least fifteen years my junior with very large biceps and thick-rimmed glasses. He looked simultaneously studious and athletic and I was grateful for the opportunity to dwell upon such an interesting contrast as opposed to the unwelcomed company of the grim-reaper.
Earlier that morning, during the pre-dawn drive to LA, I had been debating whether to ask if I could have local instead of general anesthesia. Despite the fact that I have successfully underdone general anesthesia a handful of times now, I have nonetheless always had a deep-seated fear of it, likely due in part to the fact that my father has now flat-lined four times while under its influence and has since had elective surgeries ruled out as part of his future medical care (a dangerous decree when up against your third cancer). I ventured the question. The anesthesiologist cocked his head as though considering the direction of the wind, asked me a few more questions and then said, yes, that’s probably the better option for you. You’ll be out of here in no time and recovery will be much easier. Just let me make sure Dr. Funk is comfortable with that.
He stepped behind the curtain and left me alone. There was another woman getting prepped for surgery on the other side of the curtain from me and I could hear her answering the same litany of questions my nurse had asked me. I remember that my feet were very cold and that the paper-thin blanket I had been given did little to warm them up. Oddly, I always sweat whenever I am cold - a freezing sweat that chills me to the bone. So there I was - sick with nerves, exhausted from stress, teeth chattering yet soaked in sweat all the same - when Dr. Funk pulled back the curtain and greeted me with her warm smile. She was wearing black scrubs and had her hair pulled up in a bun.
Hi, pretty lady, she said (imagine – being called pretty by such a diva when you’re coated in at least six layers of cold sweat and trembling like a leaf; but it was a genuine comment, there is nothing false about Dr. Funk). I hear you want local. You ready for that? she asked. It’s intense. You’ll hear and smell everything. Your skin will sizzle, like meat on a bar-b-que. Are you okay with that?
No, of course I wasn’t okay with that, but still I preferred it to an anesthetic twilight. I nodded.
Okay, let’s do this! she said.
And so I stood from my gurney and began walking, the IV stand trailing behind me, to the operating room. Since I was going to be conscious, I was given a choice of music selections. Mozart, I said. He’s usually cheerful, so long as you promise to skip his Requiem. Dr. Funk laughed. She explained that, dependent upon the age of the patient, the most common requests she received were for either Billy Joel or Justin Timberlake. I couldn’t imagine having scorched bits and pieces of me excised to the doo-bop sounds of Uptown Girl, let alone the pounding bass beat and distorted lyrics of Sexy Back, but perhaps those other patients were all much more spirited than me. When I later told my girlfriend about my music selection, she said she would have asked for death metal or gangster rap (that confirms it, I thought, there is something inherently wrong with me).
The first notes of Piano Concerto No. 21 filled the room and, despite the blue sheet that the nurses had raised to shield my view, I closed my eyes and tried to focus on sound and sound alone. I believed that if I bent all thought on sound, that I could better disregard any physical sensations that might come knocking. Luckily, there were many sounds to distract me: beside Mozart, there was the squeaky sound of rubber soles on linoleum, surgical instruments scraping against the bottom of metal trays, the insect-like thrum of medical-grade lighting, assistants conferring, Dr. Funk directing and then conversation settling. But the sensations came, too: poking, burning and searing sensations; pressure at the base of my throat; digging, scraping and pulling in my armpit, a heavy weight on my stomach, and an acute, exacting pain that, though entirely local, seemed to freely coarse down my spine nonetheless.
I had been instructed to ask for more local anesthesia whenever its effects wore off and I asked – many times. And although I received additional anesthesia with each request, I still struggled. As the surgery stretched and the sensations became more deeply embedded, I began to suffer. The nurse held my face and did her best to distract me with questions about what she should do the next time she visited Ojai, the touristy town where I currently live. I responded to her questions with as much command as I could, but the strength of my voice faltered. I cried as I spoke. She wiped a tear that slipped down the side of my nose and then took my hand into her own.
What is your favorite restaurant? she asked. What should I order? Do you think I need to make a reservation? She spoke softly, endearingly – like a young mother quietly murmuring to her newborn.
I gasped as a sliver of sharp heat seared in my armpit. My eyes flew open. Uhm, The Duchess, I finally said. It was the only name of an Ojai restaurant that I could recall. The other names swam around as disjointed letters in an inky, black sea of pain, like the fortune teller in a Magic Eight Ball that won’t cease its roll.
Got it, Dr. Funk suddenly exclaimed. The lymph node is out. Go get the courier. This sample needs to travel across town and get to the lab immediately for analysis.
Jesus Christ, I thought. It’s how I imagined conversation would go if medics were transporting a live organ for donation, not a lymph node for analysis. My fear rooted in deeper, like a burrowing mammal clawing out its subterranean home.
***
Just like the biopsy from a week before, I had to wait a few business days plus the weekend for my results. Several days of torment. Again, I tried to stay busy. I immersed myself in work and with my kids, in books and in journaling. I went for long walks whenever I could. Tony and I celebrated his 51st birthday. I took care of his dog while he went to New York on business. I washed my hair and vacuumed. I dusted the furniture, sang songs and emptied the dishwasher. And trailing along beside me, through every interaction, conversation, exchange and activity, was my faithful psychopomp, dressed in robes of constant, nagging fear.
Am I going to be told in five days that I have lymphoma? In four days? In three, two and now just one? Will Tony still want me if I have cancer? Will my children abandon me? Or will I be perceived as a lost cause? How and with whom should I spend my time? What truly has value? What is worth fighting for and what should I simply toss aside? How do I feel about myself? How can I be the very best person to the people I love in whatever time I have remaining? How can I meet a cancer diagnosis with grace and dignity when I saw firsthand the havoc it wreaked on my sister’s body? How do I stand and face this beast when all I want to do is run, run, run?
I felt homesick and I missed my mother. But our homes are really only in our bodies and mine might be contaminated. As for my mother, she has long-since been dead.
I prayed. I breathed. I meditated. I journaled. I talked with Tony and with my friends and family. And I worked incredibly hard to will myself into health. A steady, constant health that would roll forward with me as I aged into my eightieth and even ninetieth decades. I began to chant under my breath whenever I was alone and out of earshot: I am going to live to be a fuddy-duddy, rickety ol’ grandma who slobbers her grandbabies with wet kisses; the intelligence that made my body, heals my body; and my very favorite: every cell in my body is in perfect health. Nah, I can do better than that. Every cell in my body is in robust health. Hell yes, health. Fuck ya, health. I love my life, health.
***
And they were. My cells were perfectly fine. I did not have lymphoma. I simply had a chubby, engorged lymph node in my left armpit – possibly damaged from the MRI dye (injected into my left arm days before my ultrasound) or from the Covid vaccines and booster-shot (also injected into my left arm), or from something as simple as a shaving nick that introduced a nasty little bacteria that this particular lymph node found distasteful. I’ll never know, but that chubby pea-sized node is gone now – probably in a trash heap somewhere, or burned in some sort of medical waste incinerator, or maybe even just dumped down a laboratory sink. I don’t know. I guess it doesn’t matter. It’s gone, gone, gone.
Sometimes I comfort myself by thinking about death in this manner – death as nothing more frightening than inanimate, impartial garbage. My excised lymph node has no more consciousness now than the bazillion stands of hair that I have shed throughout my lifetime, or the infinite number of skin cells that have sloughed off my arms and legs and turned to dust bunnies under the kitchen stove, or my baby teeth that my mother probably didn’t stash away somewhere for safekeeping, or the fingernails that I trimmed over a trash can or even bit off and spat out onto the floor. All of these discarded bits and pieces are remnants of me – all formerly part of my body and the whole that makes me Elizabeth. All born of cells that individuated into some tissue, gland, tendon, organ, muscle or purpose. Just as my brain, just as my heart, just as my breasts and reproductive organs – all those other parts of me that I relate to as more critically me.
So, when the whole body goes, why quake in fear? My shed hair strands aren’t busy feeling tragic out there in some forlorn corner. Nine out of ten, I voluntarily pulled them from my head, shook them loose from my fingers and let them roll on down the road. The wind likely carried them off to get plucked by a bird for nest building, to dam in a gutter grate or to tangle up in some scrubby bush. They don’t care about what is happening to them – they are no longer sentient.
Being dead isn’t tragic because, in all likelihood, being is no longer part of the equation. It’s the living people who are left behind who feel the death, who feel the void that the absence of life creates. The verb to be probably shouldn’t even be conjoined with the noun death – they are mutually exclusive, it’s just that our conception of and language for death isn’t yet acrobatic enough to capture its essence. How can it be? Sentience is the only state we know.
So, never mind death. That’s not what matters, that’s not what gives birth to fear and dread and desperation. No, it’s the loss of those we love that we fear. It’s the losing out on our own living that hurts. That’s what paralyzes us; or, at least, that’s what paralyzes me. The stolen chance to love and dance and sing and celebrate. To note a fragrance, the breeze, a striking color, a sound; to taste, to drink, to sleep, to dream, to consider, to make love, to sweat and bleed and cry and laugh. Death is the worst form of theft, yet it is inevitable for each and every one of us. No one has yet made it out alive. There is no “out.” Where would “out” even be?
***
Cancer surveillance: a blessing and a curse. A curse for all the reasons I have outlined above. And yet, my cancer surveillance is also a blessing. My sister’s premature death was a gift to me and to my other surviving siblings because it taught us, in the most horrific kind of way, the benefit of early detection. When my sister was first diagnosed, her breast cancer had metastasized into other organs and into her skin and spinal column. She was already stage four, already at what was likely a forgone conclusion. Because her cancer had been left to percolate, her odds at survival were greatly diminished. In fact, even once detected, she was only offered palliative care. She eventually had a mastectomy, but not because her team of doctors thought it would curb, let alone, treat her cancer. She just didn’t want the visual reminder of her cancer anymore – smoldering as it was there in the folds of her nipple and in the form of a hard ball deep in her breast tissue. Her death was a gift - the chance to be screened as often as I am dramatically increases my odds at survival, blessing me with the opportunity to treat what might otherwise become untreatable.
My ongoing surveillance is also a gift because it forces me to sit with the inevitability of death and to get accustomed to my occasional visits from the grim-reaper. These tea-time chats are certainly nothing that I welcome, but they have become something that I sometimes have to do. And although I am learning that a cancer diagnosis is not necessarily synonymous with a death sentence (look at my Scottish ox of a father, for goodness sake!), there is no other option but to consider death as a possibility when you are told that you might have cancer.
And who knows? Maybe, in time, my six-month rotation of dancing with these ghoulish wraiths will eventually lessen the scorching burn of their touch. There is freedom in familiarity – freedom in having a fear that might lessen with time. We all have that innate fear of death, I just get to confront mine more often than some. And maybe these rotating brushes with death will also have a direct correlation to the quality of my life. This is when I take comfort in the phrase “what you resist, persists.” Maybe in not resisting the thought of my death I can, in fact, somehow delay the very same, or at least not be held so firmly in its clutch. I can let go of fear and embrace gratitude instead.
Singer-songwriter Jason Isbell has a lyric that gives me the shivers: “maybe time running out is a gift.” I don’t know if my time is running out any faster than anyone else’s, but I have learned how to value the time that I do have. The sun does shine a little brighter for me now. The stars in the night sky sing a louder song. The sound of my father’s voice takes on deeper meaning, as does my mother’s and sister’s memory, the smell of my children’s hair, the touch of Tony’s hand, the comfort I take in my friends, and the solace that comes from my walks, my books, my writing, my bed, the purr of my cat and, most especially, the health of my body.
Gifts, every single one of them.