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.

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.

In dreams

I’m unsure when it started, but I have felt tenderness and a dull ache in my testicle for the last few days. Naturally, this has set off every alarm in my mind; every possible worry and concern has crept back into the light. After four years, I would have assumed that the fear of a recurrence would have lessened, but it has come raging back with this feeling.
The other night, I dreamt that I was back in the treatment chair, and the nurses were trying to fit in an IV. Each nurse attempted dozens of times to no avail. Finally, the nurse, who, in waking life, I see every time I go for labs, said, “Jeremiah, I’m sorry, but we can’t fit the IV. We’ll try again tomorrow.” Then, I shifted dreams, but I am unsure what followed.
In my unconscious mind, these worries are ever-present; they have always been. It isn’t just with this feeling and sensation. My dreams regularly reveal so much; every emotional state, good or bad, is magnified tenfold within my dreamscapes.
I dream journal. I try to do so every day. I have stopped writing out the dreams in a descriptive manner. I don’t set out to write short stories-like entries when I awake with one still fresh in my mind. Instead, I pull imagery from them. I snag tidbits of information, perhaps the color of an object or a particular look I receive. However, with the dreams that revolve around cancer, I am tangled up in internal sensations and feelings more than anything external. Something in the dream mentioned above, which has occurred in various iterations for years, prevents me from being treated. I want to hang on, stay within the dream, and ride it to the end. Would it make sense once I got there, wherever there is? What answers would I receive? Would it make sense – would any of this make sense?

Perhaps this is survivor’s guilt.

Our situations were identical in almost every way.

He was diagnosed with testicular cancer. His staging was the same as mine. He, too, experienced a recurrence that presented as a brain lesion and opted for a stem cell transplant.

This is where our paths split apart. Shortly after his high-dose chemo treatment commenced, prepping his body for the transplant, he became increasingly confused and disoriented. After sets of scans were performed, it became evident that, though the heavy rounds of treatment were well underway, several more lesions had presented themselves in his brain. The decision was made to stop treatment and return home, enter hospice care, and be around loved ones. Shortly after he decision was made, he passed away.

Even in writing this, I don’t know where to begin opening up my emotional state regarding his journey and mine and where they veered off and split from one another. I shudder thinking about the fact that my lesions could have multiplied, too. Or, for that matter, the one that did present itself could have been in such an area that it was deemed inoperable, leaving me with more complications than just a stroke and a paralyzed arm. (“Just a stroke…”) What damage could my tumor have caused had it been slightly to the left, to the right, etc? Was I naive to postpone my 2nd round of salvage chemo and head out to visit Dr. Einhorn in Indianapolis to get a second opinion? Was this delay dangerous in such a way that… it’s too much to think about.

These questions haunt me. They wake me in the middle of the night. Even more so is one I can’t escape asking repeatedly: why am I here and he isn’t? Why am I alive and he … and he isn’t?

I never understood survivors’ guilt. I had heard about it but never truly understood it. Yes, on a larger scale, anyone who survives cancer thinks about all those who haven’t and, in one way or another, has that feeling. In most cases, guilt might be too harsh, but this particular scenario is apt.

I loop my posts back around. With my last sentences or so, I always seek to return to the overall idea. Is this good writing? I’m not sure. I do so to keep everyone along the way. My writing tends to drift a little far out, so bringing things full circle will hopefully lead people to say, “Oh, now I understand why he wrote…” However, with this post and the subject matter herein, I can’t. How do I bring this back around? What closing line or thought can I inject here? Nothing can sum this up or deliver on one’s need for coherency as none of this makes sense…

Perhaps this is survivor’s guilt. Maybe it isn’t so much about feeling remorse for those who have passed at the hand of this insidious disease, but rather the inability to make sense of it, to articulate it to ourselves and others. As with this post, I want to bring it back around so it feels wholly desperate and there is some understanding to accept the madness of this life and the injustices that rear their heads. But I can’t. Everything is left hanging, nothing but loose ends, dangling strands that I keep tugging at…

Be well on your journey, Alex

June 13, 1994 ~ June 30, 2020 (age 26)

3rd anniversary of my stem cell transplant

This summer will mark the 3rd anniversary of my stem cell transplant! It is hard to believe that so much time has passed since that long and very trying span of time, from June to August of 2017. So much has come to pass; so much growth on a personal level, so much understanding and acceptance, so much physical and emotional healing.

Even if I look back to just half a year ago I am left scratching my head asking, ‘who was that?’ I suppose this is normal, but I am hyper-vigilant of the passage of time, as I’m sure every cancer survivor is. It isn’t so much that I’m counting every second and rejoicing at every tiny gulp of fresh air I am graced with. No, it isn’t like that. Naturally, I am very lucky. However, I feel graced with, if that’s still the most suitable term I want to use here, with the awareness and shifts within myself. Call it “soul” or “spirit”… whatever word you’d like, I won’t label it so as not to taint one’s vision of how I’m perceiving this “inner” part.

Several months ago, I was experiencing a nervous breakdown and was admitted to a hospital in France. Really, who was that? I needed that, of course. I needed to bottom out. My body was already working on slowly repairing itself, but I hadn’t yet allowed myself to crash on an emotional and psychological level. My inability to hold on slipped and I did… I crashed hard – very hard. As difficult as it might have been, this was when the shifts began to occur.

3 years ago, I was watching fireworks from Massachusetts General Hospital’s cancer ward. I tried to sweet-talk one of the nurses into getting me a beer so I could, like a lot of my fellow Americans, sit and sip a beer while watching the display, all the while exclaiming, “Ohh!” and “Wow!” She said no and gave me another anti-nausea med and an ice cream. The fireworks didn’t live up to their hype. I heard good things; a lovely display of colorful explosions seen from the 10th floor of a building overlooking the Charles River. It sounded amazing. Though various buildings obstructed our view, we couldn’t see The Charles. There were perhaps ½ a dozen patients and nurses. It was an interesting and also eerie sight, all of us in masks and gowns; the patients seemed quiet, in that middle ground of toxicity-induced psychedelia and being fully present. I shouldn’t generalize, but I often found myself in this state, always ready for what I am unsure. All of us were tethered to our IV poles, which pumped an alarming amount of chemo agents into each of our bodies or flooded us with other various fluids. The nurses talked amongst themselves, texting and doing things normal people do. I don’t remember the grand finale. The other patients and I left the room with the promised vista of fireworks overlooking the Charles, wheeling their IV poles alongside us. I heard the muffled explosions from my sealed-off room, just a gentle murmur that was barely audible underneath the continuous hum of the air filtration system.

Every 4th of July I remember this. I remember that room on the 10th floor of Mass General’s cancer ward and the patients wheeling about IV poles, hoping to see a clear view of fireworks but, in the end, not really caring. Or maybe I cared in that way cancer patients care about things that, though they would be nice, weren’t of the highest priority at the moment. Or perhaps, like me, we all wanted to enjoy the goddamn fireworks while drinking some shitty beers and be normal, feel normal… whatever that was at the time. But alas, we all returned to our rooms to resume our treatment or our sleepless nights of nausea and delirium, or the darkness-induced existential terrors, fears, and tears, to everything (everything!) else that takes precedence over fireworks.

I don’t look back on it now, every summer, every 4th of July, and feel a sort of unease or anger, etc. I feel this reaction with other things, naturally. Other dates are inescapable; those, too, have lost their bite. The day after Mother’s Day 2017, I had a stroke, which paralyzed my left arm, postponed my transplant, and sent me to the hospital for brain surgery. I watched the solstice sun (image attached) lazily creep across the sky from my room at Mass General.

These are there and solidified in my personal journey and my personal history. They’re not so much pitfalls anymore in the yearly cycle, so much as pitstops that allow me to recess my place within all this and the growth within myself.