When I left Lesley University after the 2018 MFA residency I had no idea I wouldn’t be coming back. I was soon to find out more than I ever wanted to know about malfunctioning lymphocytes, the rituals of stem cell transplants, the blunting effect of chemotherapy on memory, and the quiet uneventfulness of CAR t-cell immunotherapy. Throughout my cancer treatment I continued to make images and art when my body cooperated and nausea and fatigue abated. When one becomes ill, banal objects take on exalted roles, clocks become gods, grilled cheese sandwiches manna, a walk on the beach becomes a feat of superhuman endurance.
In June of 2019 my cancer gave me the finger and decided to expand it’s stay in my small intestine. The day before I was scheduled to return to school I had a CAT/PET scan. Cancer is all about testing and scheduling and the repetition of those schedules and tests. Cancer is never punctual, but you must be. At Massachusetts General Hospital (MGH) these scans are performed with the same machine. In my case, I was normally summoned to the hospital at an ungodly hour to avoid the viscous Boston traffic. I’ve had appointments as early as 6:45 a.m. Coming from Cape Cod that means leaving house around 4 a.m. As a result ease of transport becomes an essential theme in the patient’s overall treatment plan, as does knowledge of the whereabouts of public restrooms.
I estimated that I spent over one-hundred anesthetizing hours in the car driving from home to MGH and back again. The possibility of side effects curtailed my driving and my partner Tom gave up hours of work time to caddy me from appointments to procedures to biopsies to surgeries and back home to recover. Repetition has always been a theme in my work and cancer treatment offered that repetition in real time, and in mega doses. I responded by taking snapshots of my medical commutes from the Sagamore Bridge to the Longfellow Bridge. Images shot with my iPhone, Holga, digital SLR or Leica printed and arranged around my dog, my symbol of home. All were as repetitious and as desensitizing as my hours in the passenger seat (a heated seat I must add which became quite a comfort to my chemo-addled body in the winter months).
I have piles of pictures of traffic in blue light, trucks embellished with gargantuan EggMcMuffin graphics, speeding vehicles, blurry green signs and rows of streetlights that appear to be bursting like zingy photons. Through the monotony I kept making images. Like other muscles, I believe we need to keep exercising our eyes and brain lest they become dull and lazy to respond. I forced myself to smile and kept scanning headlights keeping in the back of my mind the fantasy that “the happy man would not get the plague (Sontag, 55).”
As Susan Sontag reminds us in Illness and Metaphor “psychologizing seems to provide control over experiences (like grave illness) which people have in fact little or no control (Sontag, 55).” Creative expression also provides a sense of control, although false, and assigns meaning to mundane activities like photographing traffic, documenting waiting areas and “working the scene” of a hospital room.
Once settled, the patient’s vital signs are taken. Every appointment involves blood work of one kind or another. I have a port-o-cath this makes bloodwork a clean ordeal and creates a physical and psychological barrier between you and the phlebotomist. The port is a small plastic catheter surgically inserted into your artery. It becomes both an entrance and exit ramp for blood and drugs. It’s one of those banal items of cancer treatment that becomes exalted, metaphoric, turning the patient into a cyborg of sorts, part human, part mechanism. At one point I had two of ports, the second, a heavy-duty version used for stem cell transplants called a triple lumen catheter which I renamed Cerberus.
Before a scan, the patient downs a radioactive elixir, and waits an hour for it to circulate through the body then into the barrel of the beast you go. The PET scan detects high concentrations of sugar, ie: cellular activity. I imagined my thorax lighting up like a crystalline Las Vegas as my body seesawed in and out of the giant donut-shaped scanner. At this point I began drawing pictures of donuts. At the time I didn’t know why.
In medical parlance a recurrence of disease is called is called refractory cancer, lymphoma in my case. I had a small, stubborn tumor deep in my small intestine that was thumbing its nose at treatment. After six rounds of chemo and major abdominal surgery it was still there like an uninvited guest. My oncologist, Dr. Barnes, was optimistic. He urged me to join a new research study which would ultimately lead me to the newest, most effective treatment, immunotherapy.
By now it was June 2019 and I had just started the Can you make hair for me?collaborative art project. I was in the process of inviting friends and family to make hair for me, and had created a number of images. I taught Tom how to use the camera he began photographing me each weekend. I art directed and set up the shots, and dug deep into my memory for people, places and happier times.
The process for making the work was simple. Due to my compromised immune system I was confined to home most of the time except for daily walks and trips to the thrift store to purchase clothing for the project. A “head” would arrive (or I would make one) and I’d create a personality based on the materials I had around me. We used a blank gray wall as a backdrop and shot with a Speedlite set to bounce off the ceiling. As the series began to emerge I noticed striking similarities to what John Berger calls publicity images. Images that must be “continually renewed and made up-to date…yet they never speak of the present.” (Berger, 130) I had transformed my life of repetition into a series of renewed publicity photos, absent from time, yet somehow familiar and rooted in low-budget images of advertising and popular culture.
It was at this time that I began to notice lapses in my memory. Similar to my eighty-four-year-old mother, I would lose words mid sentence, or completely forget what I was talking about or doing. I began asking Tom and my family to take pictures of me hooked up to IVs, flat out on my back in the ER, and injecting myself with Neupogen, a drug that encourages white blood cell growth but causes extreme bone pain, nausea and headaches. I was afraid that the painful memories of my treatment would be dropped by misfiring neurons like fireworks exploding on the ground before being safely stored in my cerebral cortex. I was right. If I didn’t have those snapshots, I probably wouldn’t be able to write this essay.
In her New Yorker piece, How Social Media Shapes Our Identities, Nausicaa Renner (Renner) writes that new technology, especially the smartphone “allows us to produce a narrative of our lives, to choose what to remember and contribute to our own mythos.” With the Can you make hair for me? project I was able to create a narrative and alternate selves, a kind of made-up pantheon of ragtag characters, to replace the memories and the me I lost to chemotherapy. I no longer remember the abject distain I had for my freelance design job, the terror I felt at being told I had lymphoma, the crushing disappointment of cancer returning not once but twice, or the relief of finding out it was gone. But I do remember working on the project and trying to solve the creative problems I gave to myself.
I recall glimpses of my life in the year before my cancer diagnosis, but I can’t remember the details. I’ve completely lost what it felt like to be myself, what I did in the course of a normal workday. The project has become a parallel scape of fictional memories, a carousel of made-up characters and colors that spins and blends into a personality I now call myself. The images are references for time, activities and space. They help me to unearth long-term memories through associations with colors, fabrics, and materials, but do little to recover the feeling of what it was like having cancer. The images seem still to me “eternally young, fixed forever at beauty’s apogee” (Barthes, 15) and an undeniable indicator that death will one day come, beauty is superficial and the images artificial.
In July the oncologist in charge of the research study flipped a coin and it landed on heads. I like to imagine it was taken from under a corpse’s tongue on an unsuccessful bid to cross to the River Styx, but it was probably just an ordinary quarter. Heads meant I was in in Arm A of the study. After two failed PET scans lucky cancerians who got tales went straight to immunotherapy, the unlucky, like me, had to start with a stem cell transplant. At this point my creative life came to a standstill. I entered the hospital on October first and didn’t leave until a couple of days before Halloween. When I got home I was quarantined for six weeks.
A stem cell transplant is a bit like having your oil changed on a cellular level. The first step, stem cell collection, happens about a month ahead of time. The patient is hooked up to two jumbo sized IVs and all of the blood is ushered away and whirled through an attached centrifuge. The pinkish liquid that rises to the top, the stem cells, are collected and blood is put back into the body through the IV in the other arm. This process should take six to eight hours, it took me three days to make enough stem cells to be used in the procedure. I barely made the cut off of two million cells.
A month later the patient is admitted to the hospital and given a high dose of conditioning chemotherapy. These drugs are highly toxic and designed to erase the immune system so the process of building a new one can start. The idea is that by injecting the patient with their own healthy stem cells they will recognize the cancer and start and all out attack. The day the patient’s receives the new cells is called “Day One” in research circles. A team of medical professionals comes to the room and begins double and triple checking that the patient is indeed the patient and the cells are indeed the correct cells. They wheel in a small fridge that holds your the frozen cells, in my case six bags. There is a ritualistic quality to the transplant as each nurse and doctor repeats your name, medical number and birthday multiple times for each bag. I confirmed each query. I had the option of having my cells blessed by the hospital chaplain. I’m not particularly religious, but I figured it couldn’t hurt.
As the IVs were being readied my team, about twelve nurses, researchers, students and a doctor) stood around the foot of my bed. The chaplain, a young man fresh from Harvard Divinity School, said a prayer and we all bowed our heads. At the end I could hear the motor of the IV churning and many of the staff wished me a “Happy Birthday!” while toasting bottles of water to my new immune system. The process was not without its drama. Two of my bags ripped while thawing and needed to reconstituted and manually injected into my port through an object I can only describe an oversized turkey baster. My mouth tasted like garlic and medicine. The room smelled like rancid pizza and raw fish.
When the last bag was injected, I became very sleepy. The team left my room and I dozed. I remember opening my eyes and seeing a stranger looking over me. He was heavy browed and dressed in medieval attire. He had on a burgundy and purple tunic with a matching roundlet hat. In his hand was a black silk cord. He cut the end with a scissors and gently put the cord around my neck leaving it untied. He placed one end of the cord on top of the other made the shape of a cancer ribbon. I felt at ease with his presence, all was peaceful in my room. He held a Catholic thurible from a long chain. Incense rose up and curled around my bed. I looked over at him, but he was gone.
A month or so goes by and I’m at home in quarantine. My brother, an avid paranormal enthusiast, takes me to see a psychic medium. I’m not supposed to be outside but he wants to do this for me and I agree. The reading lasts nearly two hours and is stunning. At the end of the session, I mention the man in the medieval garb, and the medium becomes very still. “That was Danté,” she says “he wants you to read his work.” I chuckle to myself, agree to pick up a copy of The Divine Comedy and forget about it.
A week later while Googling, I come across a Wikipedia page about Danté and rapid click. The famous Botticelli painting of Danté begins to load and I realize it’s the same person I saw alongside my hospital bed. I’m sure I’ve seen the painting before, it’s probably cached somewhere in my memory, but the incident is startling none-the-less.
My cancer came back in November and my final stay in at MGH began on December 26 and ended about ten days later. This time I was getting a CAR t-cell treatment, touted as the miracle cure. I managed to read Inferno. I wanted to see if it was somehow connected to me. In Canto I Dante is lost in a dark wood at the advent of the darkest night of the soul. He’s traveling downhill and his passage is blocked by three beasts a leopard, a lion and a she-wolf. I read this passage spoken by Virgil:
“It is another path you must take,”
he answered when he saw my tearfulness,
“if you would leave this savage wilderness;
the beast that is the cause of your outcry
allows no man to pass along her track.
but blocks him even to the point of death”
(Danté, line 91)
Cancer can make sense of things that once seemed abstract. I left the hospital cancer free.