i waited for you in the park.
when you arrived,
you held me,
and your cold nose pressed against my neck.
you nuzzled me,
and our skin quickly
adapted to one another;
mine cooled, or yours warmed
i’m not sure.
i was happy and
excited about what we might become.
the sun and an early spring day
marked the passage of time
and life moving forward.
these were early days—before
waiting became an annoyance,
before illness,
when i didn’t understand what
holding my breath truly meant.
the anticipation of test results slowed time,
and hours in the treatment chair
felt like lifetimes.
after my first seizure,
when the illness forced my world apart,
time shifted.
you found me
coming to the emergency room
to gather the pieces.
fresh from outdoors,
from the chill of an early
chicago spring day,
remembering this:
your cold nose
pressing into my neck,
i can still feel it as time slowed.
and why can’t these moments
be eternity?
when two bodies
seek a common temperature,
can’t this search last forever?

The wind through an open door

At night, lying on my back, I stay awake and listen to the rattling of my lungs.
A wheeze, a strange resonating noise—like damp leaves—if mold had a sound, if abandoned rooms with winds spoke.
I insist I am okay.
I’ve always said, “I’m okay.”
From my youth, my father’s glare, to now, the groan of my lungs.
But I knew now I wasn’t; my body was revealing signs of sickness.
When had climbing a flight of stairs become a challenge?
Why was I losing weight?
Why did I wake up in the morning without the will to start the day?
The cravings of a young man—sexual longings, morning erections, and pleasuring myself in the stillness of the night—these were memories.
Someone my age shouldn’t be dealing with these issues, right?
I am a young man, strong and proud with rugged New England blood, generations of good health, and a life without doctors.
I kept telling myself, ‘Everything is okay.’
I kept repeating, “Everything will be okay.”
But it was never just an irritation in my throat.
The cough wasn’t just spring allergies.
“Hello,” I say.
“You are closer now.”
The wind through an open door has achieved form.
You have become a presence, a physical form I can’t ignore.
“Hello, Jeremiah.”
You’re in the hallway as a guest now, and you’ve even taken off your shoes.
How could I not welcome a guest?
A caller who had been inside, who had been within, was now at my door.
Cradling me as I sit on the shower floor, coughing blood into the drain.
Wrapping me in the steam of a scalding shower that never warms.
You are the fading winter, the arriving spring, and the buds on trees along West Thorndale.
You’re sitting next to me on the L.

Featured

A Journey

This is a tapestry woven from the insanity and beauty of life. It represents a journey from hopelessness to hopefulness and the process required to move gracefully, albeit clumsily, from one to the other. While there may seem to be no meaning in my cancer diagnosis and the long recovery journey that follows, I am not entirely convinced of this. We find purpose in the absurdity of life’s events and define our mission through the time we are given and the choices we make along the way. I was diagnosed with advanced testicular cancer in April 2016, and I am currently on a path of recovery and healing—a journey of self-love and self-exploration.

Since my cancer diagnosis in 2016, I have been trying to write a memoir about my experience. However, I have found it challenging to make progress, whether because of the emotional triggers this project evokes or its overwhelming scope. Despite these challenges, I have managed to fill numerous journal pages of varying lengths, exploring topics such as illness, mortality, and personal growth.

These are my journal entries posted here in a blog-like format. They consist of rambling thoughts and reflections. I’ve realized that it’s not possible to start at a specific point, such as the date of my diagnosis, and simply move forward, hoping to understand everything. I had to explore a significant portion of my personal history, engaging in self-inquiry and analysis to truly understand the healing process. Healing itself doesn’t begin at one single point. It is a journey.

Although these posts have a sense of linearity, it might be hard to notice at first. Viewing each entry as an individual event, rather than part of a larger story, will provide more insight into my journey. As the story unfolds, it becomes increasingly clear how my life, physical and mental health, and spiritual growth have evolved.

I observe the passage of time by the jar of dirt I keep in my closet.

Between September 2015 and December 2015, I worked as a volunteer fieldhand on Samsø, a small Danish island off the Jutland Peninsula. The island was flat and windswept and, due to the waning tourist season, becoming quieter and quieter. The sun set earlier each day; the island was turning in for the winter. In other words, it was an ideal place for an artist seeking solitude and a reprieve from the hecticness of the city from which I had just left.

On the morning before I left to catch the ferry back to the mainland, which would, in turn, take me back to Copenhagen and onward to Chicago, where I would spend my last semester of grad school, I walked out into a barren field and filled a glass jar with dirt. Though I had only spent three months there, the land had become very important to me, nurturing and fulfilling in a way that so few things had been.

I turned from the field, took the ferry back to the mainland, took the train back to Copenhagen, and took various flights back to the US before commencing what was supposed to be my final semester before completing my MFA.

The jar of dirt came with me.

I left Samsø in mid-December 2015 and was diagnosed in early April 2016.

From there, my health story winds through various surreal, horrifying, and alarming circumstances, culminating in two stem cell transplants, the 2nd of which ended in late August 2017. As such, I am fast approaching the 5-year mark of being in remission and cancer-free. Having experienced a recurrence six months AFTER my initial treatment, this is a remarkable milestone.

Five years.

I can’t wrap my mind around it. I can’t process it.

It is shocking to consider all that has come to pass since August 2017. It is beautiful to witness one’s strength and humbling and frightening to be continually reminded of one’s fragility.

But it all doesn’t add up to five years.

I measure time by the jar of dirt in my closet, the container that survived my rapid exodus from Chicago when I scrambled to return home to Maine for treatment. Dazed by the news of my diagnosis, the surgery, the multi-day stay in the hospital, and the concoction of medication in my system, I still made sure to grab the jar of soil off the shelf in my room. So while other things, such as clothing, books, etc., found their way to the dumpster behind my apartment, the jar of earth stayed close at hand.

This is time.

On Samsø, I stopped carrying a phone. Time lost a feeling of importance and urgency. Towards the end of my work-stay, we’d start work when it was barely light and end when dusk was well upon us. I started learning how much can be understood by the land and how the light fell on it. I realized that I was beginning to comprehend the seasonal shifts of the earth, just as I knew the passing of the day by the soil and how my hands and body felt with it.

This is time.

I observe the passage of time by the jar of dirt I keep in my closet. Sometimes I open the lid and inhale the dwindling scent that carries the history of seasons and crops with it. Now and then, I pour a small amount onto my palm and consider how lucky I am to have known time in two drastically different formats; the abstract form that tells the seasons to shift and the crops to grow and the concrete structure that allows me to understand the significance of this five-year anniversary.

Falling in love with yourself again is a continuously evolving relationship that will always be fulfilling

As a cancer survivor, it takes time to love the body you felt betrayed you.

Then, however, you begin to see how hard it worked to save you.

Falling in love with yourself again is a continuously evolving relationship that will always be fulfilling!

Do you want to live forever?

Butterfly

We named a Spotify playlist “Butterfly.” We did so because one of our last meetings before I fell ill was at the Peggy Notebaert Nature Museum in Chicago. There we watched the butterflies as they fluttered about. The children giggled as they landed on their heads and arms. We all became child-like in that place – even the adults tittered and held out their index fingers, eager for one to take respite there. It was pure glee, but I can’t help but wonder if the butterflies knew what was in store, what epic migration, one of the most significant natural events, awaited them come fall.

One of the first songs I put on the playlist was Raign’s rendition of “Knocking on Heaven’s Door,” mind you, not “Knockin’ on Heaven’s Door,” as the original version by the great Bob Dylan goes. In my mind, I cannot separate that song and the butterflies; their graceful movement, which I had seen just a few weeks before returning home for treatment, is synonymous with this track. Even now, when sitting with my coffee and gazing at our butterfly bush in our backyard garden, I watch them and mentally hear that synthy-laden, electronic drum version. Her potent, albeit angelic voice is layered and drenched in thick reverb. I initially heard it, as mentioned, just weeks after my return to commence my very 1st round of chemo (2016). So, there is an extra layer of chemo-drug-induced and emotionally consumed intensity.

The mind is extraordinary. I woke up today (August 5th) and wished my sisters a happy “Cinco de Mayo.” I was jarred awake by a landscaping crew, and in my mind, the rhythm of their compactor sounded like an MRI machine. In this hazy mental place, it wasn’t August 5th, 2021; it was May 5th, 2017, the date I was supposed to enter Mass General to begin 1 of 2 my stem cell transplant. (This was the original date, but that was pushed back by a month because of my brain surgery.) In texting them with good wishes for Cinco de Mayo, I wanted them to feel a sense of normalcy that I didn’t have on this particular date. (It is my nature to try to protect and cacoon people, especially regarding my health saga.)

It took a strong cup of coffee to pull me into the now. First, I began thinking about my strange wake-up and where I was in mind and heart. Then, as it has been a while since I have listened to it, I put on Raign and sipped more coffee.
Little did I know then that the Peggy Notebaert Nature Museum was this sacred little bubble. Not only for me, though for obvious reasons it was, but it seemed that way for everyone there. The laughing children, the adults who regressed to a child-like place, all stepped away from the world. Then, as my mind does, at least when it’s fully awake and has a bit of coffee, I thought about the people in that blissful bubble and the butterflies fluttering about. Who was giving whom a respite from life; was it the humans gazing in awe at these gorgeous little beings, taken away from their worries and stresses, even if just for a minute. Or was it the butterflies developing a divine connection with a human by landing on their index finger or soaking in the gleeful laughter of children before embarking on a migration of epic proportions?

I will undoubtedly wake up again in a place and time far from here within the next few days. This isn’t solely for the benefit of others, to grace them with a feeling of normalcy, but also for me. I have routine bloodwork in a week (August 11th) and an oncologist appointment two days after.

Maybe I will wake up thinking I’m a butterfly.

“Once upon a time, I dreamt I was a butterfly, fluttering hither and thither, to all intents and purposes a butterfly. I was conscious only of my happiness as a butterfly, unaware I was myself. Soon, I awaked, and there I was, veritably myself again. Now I do not know whether I was then a man dreaming I was a butterfly or whether I am now a butterfly, dreaming I am a man.”

Chuang Tzu (c. 369 BC – c. 286 BC)

The Wordsmith

I fancy myself a bit of a writer, a wordsmith. I never had the confidence I do now to write. I was always worried about my grammar and punctuation. More than anything, I was worried about opening up and spilling it all out, letting the floodgates open and setting for a deluge of emotions, feelings, and thoughts that would potentially leave me exposed to criticism or judgment. After diagnosis, I stopped caring. The last thing I would concern myself with was grammar. Next in line, or perhaps going hand in hand with grammar, were the thoughts of others. I was already emotionally raw on so many other levels; I might as well leave it all wide open.

Today I met with my oncologist, and, as I expected, it was decided to “keep an eye” on things. The recent MRI showed hemosiderin deposition in the brain, which isn’t as bad as it sounds. These deposits transpire after bleeding has happened, which can occur after any traumatic injury to the brain. The bleeding leaves behind stains and, in time, is broken down by the body and left behind as iron deposits. This is my basic understanding. There is some question as to whether or not this could be residual neoplasm, leftover cancer cells. This raised the question in my mind as to whether or not this is why my tumor markers are rising ever so slightly. But, as stated, we’re just going to keep an eye on it.

keep an eye on it. keep an eye on it. keep an eye on it. keep an eye on it. keep an eye on it. keep an eye on it. keep an eye on it. keep an eye on it. keep an eye on it. keep an eye on it. keep an eye on it.

This is when the longing to be a wordsmith falls away.

The old and young. Young and old. What a madhouse here. No rhyme or reason at the cancer clinic. I sometimes want to ask, in a clandestine whisper, ‘Hey you, ya you! whatcha in for?’ ’cause that’s what it’s like. I’ve never been in jail, but I can imagine what it is. I’ve been in a different kind of prison for four years, or has it been longer? I can’t remember. That’s the problem with these days that blend into months and then merge into years; they all look and feel the same. It’s worse in treatment. It’s always worse in treatment. Even today, a beautiful day, and I swear it was May, yet I wrote March 24 on my intake paperwork. “So, doc, ain’t I done good?” I ask as he studies my file and randomly looks up at me. “I’ve been good, I swear! I’m free to go, right?” I want something. I am seeking something; everyone is seeking something in treatment or after treatment. Craving the words, “You’re good!” Oh yes, they call us survivors; what a strange name. I’ll know what this something is, what it’ll be once I get my claws sunk into it. “Well, why don’t we keep an eye on it.”

I schedule a follow-up, bloodwork and scans for a later date. But it wasn’t me. I planned them for my body to be aware of my physical being and its course. But emotionally and psychologically, cancer is no longer.

To be clear, emotionally and psychologically, cancer no longer has me.

Follow-up scheduled: COMPLY (Y/N) Y

Current objective: to be and enjoy being? COMPLY (Y/N) Y

Worrying Overridden: COMPLY (Y/N) Y

Outer Stability Seeking: COMPLY (Y/N) N

Inner Stability Seeking: COMPLY (Y/N) Y

(Physical) Cancer Status: Tracking/Monitoring

(Emotional/psychological) Cancer Status: NED (No Evidence of Disease)

My 1st MRI

My first brain MRI was in Chicago after being rushed to the ER. I woke from a seizure stuck inside a device that hummed and rattled with a disembodied voice telling me not to move. As I recall, it wasn’t a pleasant voice. However, in defense of the tech overseeing the procedure, I struggled to free myself. In my defense, however, who the fuck wouldn’t? I was reentering the world from a seizure; I didn’t know who I was or where or, for that matter, what I was. I was there, semi-conscious, with my head stuck inside an unknown object that seemed to be pulsating. “Jeremiah, don’t move! If you do, we’ll have to start the procedure again!” So, I stopped moving; instead, I just cried.

What I remember, even more than the terrifying sounds, the somewhat annoyed tech, and the tears, was my thirst. My god, the craving for water was so intense. My tongue was leather-like in my mouth. When thirst surpasses fear, a new level of a primordial being emerges. That is the creature that remained on that MRI/scan bed, the being who rested motionless and withdrew inward. I do not know any other word to describe the sensation better, but “withdraw” is most suitable. It was as though Jeremiah split into two halves, the person being tested/scanned and the one full of desperation. In between these was where I ended up and withdrew, holing up in a chasm. I remember resting my hands by my side as if I were a windup toy that had just ended its cycle. I’ve always wondered what the MRI tech thought. Did they see me slip into that place, that point between two worlds, the chasm I mentioned?

The “scanxiety” is everpresent; how could it not be? However, I understand that my genuine fear is detaching. I am concerned about stopping as I did before within that gap between the two halves amidst those two worlds. The horror of a potential recurrence is no longer as intense as it was, even with the tumor markers that are trending upwards ever-so-slightly. If it ever does return, I’ll deal with it. I dealt with it when initially diagnosed and again with the recurrence. After numerous hypnosis sessions, it is evident that my worry of withdrawing, psychologically and emotionally disengaging, far surpasses my concern of a recurrence.

As I have discovered, and most already know, cancer can be managed and treated in numerous ways. The withdrawing, the derealization I speak of, isn’t controlled or cured in such a targeted manner. I feel more detached with each MRI. Amid each procedure, the tech, be it for an MRI, CT, etc., needn’t tell me to “stop moving!” as I keep finding my way back to that middle ground, to the chasm.

Epilepsy Monitoring

My first anti-convulsant med helped keep me seizure-free for over a year. As the seizures started, it was slowly increased in dosage to no avail. My neurologist changed that medication out for another, which has seemingly stopped working, too. Each medication has reduced the frequency of my seizures; however, I have experienced two severe episodes in the last few months. Each time, I tumbled pretty hard. The second time, I fell several steps and eventually went to the ER, wondering if I had a cracked rib. Thankfully, neither incident caused much harm. The wound, however, is more emotional and psychological. Yes, my entire torso might have been covered in bruises, but the real damage is in my psychological state. I want to move forward, and it seems the only real thing preventing doing just that is the seizure activity. I can manage the anxiety, kind of. The fatigue requires a good midday nap. The seizures are detrimental. My neurologist suggested that I enter an epilepsy monitoring unit (EMU) to understand the brain activity further and see if we might find a way to manage the seizures. He had mentioned this in the past, too. Initially, the thought of being inpatient (yet again!) in a neuroscience ward where I would not only be monitored 24/7 by a team of doctors and techs trying to induce seizures sounded horrific and barbaric. However, with the increase in activity, it seems the best option is to undergo monitoring to comprehend the root cause of the brain activity. Perhaps this will entail surgery or some other form of intervention. Right now, that is very much a mystery. The only thing that is understood is that this is hurting my emotional healing and recovery.