Every year, on the 1st of April, I mention that this is the anniversary of my diagnosis. I talk about the irony of it, being that I was diagnosed on April Fool’s Day. (If you can’t see the incongruous nature of that situation, I’m not sure you’ll make it through life unscathed, my dear.) Today, however, I was thinking about other things, things beyond the absurdity of it all, which, to my pleasant surprise, brought about a giggle or two and not “what the fuck?” moments. You see, life is linear, in a roundabout way. Are you with me? I’ll try not to lose either of us, as I clarify.
We can wake up and go to bed and, in between, either exist or live. I was thinking about this as I stood on a small chunk of land poking out into the Bay of Biscay. Far out, somewhere, a storm was rolling and lurching – as they do. I arrived on foot, having walked from Santander. I knew a storm would come; storms always come; they’re linear – in a roundabout way. I didn’t consider the lightning storm. I was not expecting the hail nor the rapid drop in temperature after that. I thought that I had planned for things… We’re always looking, plotting, and considering ways to plan things. Yes, we’re always planning how to prepare. Things. Things. The linearity, the trajectory. Things. I wanted something to go accordingly. I wanted to exist, plan for hail, and prepare for post-graduate life. Things. Bring my gloves for the drop in temperature, and consider how to outline my resume to make a potential employer go, “He’s our guy!”
Existing. It’s existing.
To exist –
verb (used without object)
to have actual being; be:
The world exists, whether you like it or not.
This isn’t a survival story. Nope. I was freezing to death; I wasn’t lost in the depths of the wilderness. This is about sitting under a tree, stuffing my hands into my armpits to keep them warm while watching a storm pass over a gorgeous seascape. I was existing. I was waiting for linearity to run its course. Yep, I’m just sitting there and waiting it out. Linear. Point A – point B
Cancer and cancer survivorship is not linear. You can stuff your pack with all the shit you can think of, and something will come up, and what was once progression is kicked back to point A. It’s linearity in a roundabout way because it’s progression until it’s not. It’s growth until it’s not. It’s freedom until it’s not.
What truly breaks the cycle is opting to live and not simply exist, being and not endlessly planning to be, enjoying being rather than planning on it. I only realized this…today. However, I don’t know exactly. Sometime between waking up and knowing it was my diagnosis anniversary and accepting the fact that I was actually going to stuff my hands into my armpits because my gloves were sitting on the table at my Airbnb.
To live –
Verb (used without object), lived [livd], liv·ing.
To have life, as an organism; be alive; be capable of vital functions:
I was asked recently what I thought life “was.” A friend, who is also in a place of stability post-treatment and now trying to navigate the “new normal”, posed the question. It was vague, rather broad, but I knew what she meant.
At the moment, I was working on a lesson plan for a course I’m taking and had Miles Davis’s “Bitches Brew” playing in the background. My knee-jerk response was that life is like jazz.
Bitches Brew sounds as though it’s just about to fall apart, as if it’s always teetering on the edge but somehow manages to hold itself together. I have been listening to it for years and each time I keep expecting it to implode, to crumble inward upon itself in a cacophony of absolute mayhem.
I want it to.
A part of me wants it to. I want to pinpoint the exact moment and exclaim, “See, right there, I told you!” I want it to because then I would feel like I could do the same; I could crumble inward after pushing too hard for too long.
But I don’t, nor does “Bitches Brew”. We both walk that tightrope. Onward. Each and every time I listen, I am awestruck. Not so much by the virtuosic skills of Davis and his co-conspirators that sparked a whole new genre of jazz, but by the fact that it doesn’t fall apart and keeps moving along as if in an act of defiance.
Life is like jazz; have a set idea, a plan to follow, and improvise in any situation that might differ from what was expected or wanted. Life is like jazz, play with band mates who can follow your lead – OR you theirs. Life is like jazz, pay homage to the greats, but add your own ideas; build off of them, respect them and the paths they’ve laid, yet explore what might be jumping off points for your journey. Life is like jazz, play a wrong note and recognize there is no such thing as a wrong note, just an experience had. Life is like jazz, as Davis said, “Anybody can play. The note is only 20 percent. The attitude of the motherfucker who plays it is 80 percent.”
There is a photo of me as a young child sitting in a rhubarb patch, looking content. I like telling people I was born on a farm in Vermont. This, of course, is true. Born to parents who went “back to the land” a couple decades after the peace-&-love generation & decades before the trendy, neo-hippy movement of today. Displaced, so to speak; the idealized, flower-power mentality after its heyday had come and gone, and way too soon to sell “Vermont-made” handicrafts on Etsy. Sitting in a rhubarb patch as a child, I was in a little garden paradise, blissfully unaware of the lack of cultural stimulation, full-time employment, and the reality of being 16 miles from the nearest supermarket.
Gardening is a form of regression back to this innocent state, not entirely of course, as I am no longer a child in a rhubarb patch, but enough so that allows for certain worries and concerns to be gently washed away.
In the summer months between semesters, I would landscape. It wasn’t lucrative or as lucrative as I would have liked considering my upcoming needs as a full-time student, but I found myself repeatedly drawn to it. The long hours of labor, the sun and sweat, and the feeling of contentment after a day or a long week were completed. I needed this connection to labor and the earth in those summer months. It was a reprieve from the bullshit of academia, a world I was beginning to loathe. I worked with men who, as children, labored alongside their brothers and sisters, mothers and fathers, in the potato fields in Maine. I had worked with them for several summers. Each summer, I’d return, and they were there, seemingly untouched; country music playing in the shop, lunchtime at noon on the dot, and crass jokes when the situation presented itself. Whereas they saw the job as a means to an end, I saw it as a desperate need to return to the land, like my parents, and get my hands in the dirt regardless of how the future might unfold.
During the initial treatment I completed in July 2016, I was too ill to venture outside to do any gardening. The following summer I was at Mass General undergoing stem cell transplants which, after being discharged, left me with essentially no immunity as well as energy levels that constantly hung well below normal. 2018 allowed for light yard work. I would venture out and, as usual, due to my stubborn nature, would push myself too hard and end up exhausted to the point of tears. Nonetheless, it felt good! I have started early garden cleaning this season. Raking the leaves, spreading a little mulch, trimming back anything that was too lanky last season. These seemingly little pleasures make me happy. Yes, I have to wear the N95, the same type I needed to wear whenever I roamed the halls at Mass General. The sterile smell conjures up numerous memories and nauseates even to this day.
I have been contemplating the reasoning behind my love of gardens and the earth itself. This post (or update) has remained unfinished for some time as I wasn’t sure how to end it — rather, how to articulate the power gardening has over me. What I came to realize is that I can’t fully articulate it, I can’t express it in words as there are none. After my weeks of trying to find the great “why” we perpetually ask ourselves as humans, I do know that there is honesty in gardening, in the earth. A single garden bed has no masks to hide behind; it is more direct and honest than most humans ever will be. A return to the earth, to the garden(s), is the kindling of a relationship that, for me, surpasses the relationships I have/had with my own species. I feel safe within gardens and the earth itself. I can be joyful and happy or sad and mad; the garden, the earth, accepts this and is joyful with me or soothes my sadness.
I didn’t understand this connection for the longest time. In fact, as stated, it took serious contemplation to even recognize the reasoning behind my feelings for both gardens and the earth. Looking back, I can trace this feeling of comfort and safety throughout the years and through the many gardens I have worked in and spent time in. I wonder about that photo of me as a young boy sitting in a rhubarb patch. I don’t want to taint that memory with the ideas and philosophies I have now as an adult, but I can’t help wondering.
After drinking one liter of contrast dye and being poked numerous times to place an IV, my chest/abdomen/thorax show stability! No new developments – things are as they were and have been – stable!
Now, the task is sorting out these seizures. My anticonvulsant med has been increased, so we’re hoping this holds. However, if it doesn’t, the next step would be inpatient epilepsy monitoring. Several months ago, this was the initial idea; however, my neurologist didn’t want to jump into that. As he said, “Let’s leave well enough alone.” At the time, it had been a few months since my last seizure, and the hope was that the medication was holding. After my recent seizure, however, it was decided that, should another episode occur, I would enter the EMU (epilepsy monitoring unit) at Maine Medical Neuroscience Institute to get a very clear idea of the seizure activity.
Part of me wants to enter the unit right now to really understand the root cause of these debilitating seizures. The flip side is that I am exhausted, and the thought of being impatient for any reason makes me angry and sick to my stomach.
I want to return to normal, and this bullshit idea of this being the “new normal” greatly annoys me! This mentality is far too easy to put forth from people who haven’t spent 3 years trying to stabilize themselves, right themselves, adapt, and readjust every moment of every day.
The positive news is that my lungs/thorax/etc. Are stable overjoys me… but I celebrate halfheartedly, always wondering what might be lurking, waiting for me to let my guard down. History has shown that with every up, with every moment of elation, is followed by a horrific down, a paralyzing fall. What is seen as pessimism, or something similar, is me trying to minimize the letdown, the fall from too great a height. Being in this constant state of emotional and psychological neutrality is a shame.
As part of my psychotherapy, I was asked to write about the initial seizure and subsequent diagnosis from the 3rd person’s perspective. I have buried a lot; I haven’t wanted to return to that particular day, but I know it is present. It is there, in my mind, lurking. It appears in dreams; it presents itself when I let my guard down. In my unconscious states, the presentation in these moments is sometimes cloaked in metaphors and surreal imagery, but I wake knowing where it is tethered. This is human nature; this is our survival mode kicking in.
Jeremiah Ray, untitled, 2013, oil, acrylic, charcoal, dirt, on canvas
Jeremiah did not feel well upon waking. Perhaps it was stress or another late night of working on his thesis… he could not tell.
After a shower, he felt slightly better, but there was a tiredness that he could not shake and a queasy feeling in his gut.
He exited his basement apartment and stood on the stoop. The dappled sunlight flooded over him. The air was still cool, as it was barely April, but the sun was growing strong. He closed his eyes and stood still, ‘yes,’ he thought, ‘sunlight will nourish me.’
Stepping down, he dodged the uniformed children making their way to an elementary school just west of his apartment. He noticed, almost daily, that their uniforms had a military look to them. Neatly pressed shirts and pants, leather shoes, etc. They didn’t look like the catholic school uniforms he had worn in his youth.
Jeremiah arrived at the corner of Broadway and Thorndale. It was a busy morning, and, like the school children rushing to make their classes, the cars that whizzed past had an urgency to them. Jeremiah didn’t have such an urgency. He stood on the corner and let the unhindered sun fall over him. The traffic and pedestrians danced around him. He seemed to be at a standstill; he was, in fact, and this made him seem out of place within the whirlwind of the morning commotion.
He had no real urgency, he had none in fact. That morning, his only plan was to go to the park and meet Eda. They had arranged to soak in the sun in Millennium Park. It was, he noted again, a perfect day for such an occasion. Also, he wanted to see more of Eda, she was attractive, intelligent and a good conversationalist. They were still in the early stages of getting to know one another. He liked this time, the explorative and exciting time of a potential relationship.
Part of Jeremiah’s attention was preoccupied with the lingering feeling he had had since he awoke. It wasn’t nausea per se, and he knew the sensation of stress; thus, he could also rule that out. The other part simply wanted to enjoy the sun. He remained in a neutral zone, letting neither sensation nor desire pull the entirety of his attention.
Jeremiah had waited through two rounds of red lights & two rounds of green crosswalk signals beckoning him to join the others in their haste. He decided to go across Broadway to the Thorndale Red Line Station and join in the morning rush. He disliked these morning commutes but loathed the afternoon and evening ones. Depending on the day, the northbound trains leaving downtown anytime between 4 and 8pm were like cattle cars. The morning commute was less crowded; Thorndale was only a few stops before the end of the red line, a perk of living so far out of the city.
The schoolchildren ran past him as he stepped out to cross the four lanes that made up the intersection of Broadway and Thorndale. Broadway was one of those streets that ran a great distance, miles and miles of ever-changing facades; CVS pharmacies, mattress stores, seedy restaurants, the flip side being trendy coffee shops, hipster bars, Whole Foods, etc. Jeremiah was used to New England streets, even the city streets like those in Boston, that curved around this way and that, intersections that confused tourists and locals alike, and one-way streets that began randomly. The city had no real planning and just grew with the expansion of the population, which grew due to the Industrial Revolution and the massive changes it brought with it. It was as if the city reached out in all directions, sending runners here and there that shaped the city with some chaotic beauty. On the other hand, Chicago was systematic; streets would run for miles and miles, and the flatness of the Midwest let them stretch to no end.
The sound of the schoolchildren became slightly muffled, as if there was some sort of ringing in his ears or that they had water in them. Sunlight bounced off of a storefront window and blinded him. It was a flash, like an explosion, a bolt of lightning. The schoolchildren ran about, laughing gleefully. Looking down Jeremiah saw the shadows of everyone going to and fro, it was an insane dance upon the sidewalk; bodies blending and merging, figures morphing into multi-limbed creatures that split apart, multiplying and dividing. Again, an explosion as the sunlight bounced off another storefront window. He had kept his gaze down, mesmerized by the multi-limbed shadows. As the blast of light occurred, the shadows dispersed as if running from it, as if scared. Then, when the lightning flash passed in the blink of an eye, the shadows returned and resumed their odd dance.
Overhead, the northbound Red Line slowed at the station. The thunderous wheels rolled to a stop and then began again, generating this metallic cacophony that quickened until it was swallowed up by the southbound train. The two sounds were dissonant and jarring. The northbound train was picking up speed as the southbound train began to slow. The sounds pulled at one another, tearing an ugly hole in the peaceful morning.
Clack clack claclaclaclaclaclclcl the northbound train ran away.
A hiss of sorts sounded out; there, above him on the trestle that stretched over Thorndale, was the southbound train. It stretched many cars and seemed to loom almost imposingly above him. The doors opened and then closed, and it moved south like its northbound counterpart as if tugged by some unknown force. The sunlight broke through the train cars; at first, it was slow, shadow-light-shadow-light. Then, as the train increased speed, the timing generated a hypnotic sensation even behind closed eyes, shadow-light-shadow-li-sha—l-sh-l-s.
Jeremiah’s stomach turned, the queasiness rose up inside him, and there was almost this desire to wretch. He was unsure at that moment if he was standing still. Was he moving? Others around him took no notice; they flowed about him like a river moving around a large rock. Unlike the rock holding its own in the torrents of raging water, he began to give way, to slip. A sneaking sensation of paranoia crept up within him. It crawled up his spine and filled his mind with questions: Are you ok? Are these people aware of you? Are you having a panic attack? His awareness of self made his eyes move about pinpointing someone or something that might be an anchor he could hold. There was no one. There was nothing.
The feeling of queasiness moved from his gut to his head, and there became a pressure. As it ventured from his gut to his head, it curled its fingers about his throat, then wrenched his jaw open with such force. It felt dislocated, swinging there, disjointed, resting on its hinges. Then, the fingers crawled into his brain. His eyes fluttered. They fluttered again. The two trains arrived simultaneously, northbound and southbound, directly across from one another on the narrow, wooden platform that separated the two trains. The doors opened at the same time, and both departed at the same time. The metallic clanging was almost symphonic and then again became dissonant as the two ran off in separate directions, each moving at different speeds.
His unhinged jaw swung open and locked in that position, ajar and painful. His stomach burned, his legs unsteady. Jeremiah’s right hand began curling inward, fingers to palms. He had no control of this movement, none whatsoever. The southbound train arrived, and the shadows flickered until they slowed to a stop. His eyes fluttered in a syncopated rhythm; eye open, shadow, eye closed, light, etc.
His ears filled with every sound, every car, every child running off to school, every footstep, every flash of light… Then, there was not a single sound at all. Like the shadows upon the ground that moments before had transfixed his attention, so too did the motion of everything and everyone, just a blur of beings and objects in various colors and shapes, coming in and out of lights and shadows. Then there was stillness and just a whooshing sound in his ears.
His curling hand turned inward and was drawn upward towards his open jaw, then further to his head. He cupped it as best he could with his rigid hand. It wasn’t pain that he felt; he didn’t know the words. There was simply a lack of control. He could not say no to stop this, to return his hand to his side and close his jaw. The whooshing sound disappeared, but the world still remained motionless. A sound came from him, from within him. It wasn’t a word or a plea for help. It was a word to him yet outside his vocabulary. A moan escaped him as a sigh, as a yawn might. A long, extended moan. Then his body fell, his legs gave way, and his being slipped downward into some hole, into some sort of abyss that opened underneath him, a trapdoor in the earth.
Where was he? Who was he? Just blackness that engulfed him; rich, thick darkness in which no light was present, no words were uttered, nothing. His sigh had left, the morning commotion had gone, and the trains no longer sounded out. Nothing. No one.
Waiting for an MRI or CT scan results is no fun whatsoever. Honestly, there is something about bloodwork that feels worse, more challenging, more painful. Perhaps because of the speed at which labs are drawn and the agonizing waiting period. An MRI, as well as a CT scan, require some form of preparation. Blood labs are quick: in / out / get out. I can’t speak for other facilities/clinics, etc., but there is a lengthy waiting period for results. I say “lengthy” because when you’re pacing around like a nervous wreck waiting on results, even if just for a few days, every second feels like an eternity. I had my labs drawn on Friday, February 1, 2019. So, considering the time delay with the weekend, I might not hear until mid-next week.
When I was first diagnosed, I was asymptomatic. As I have mentioned in numerous updates and blog posts, my only symptom was what I thought was a chest cold (cough, slight wheeze, etc.). When the recurrence was noted, I had absolutely no symptoms – none! At the time, I was shoveling snow off my roof, stacking wood, and going on lengthy treks in my beloved woods. There wasn’t a single indicator that something was even remotely amiss.
I don’t trust my own body. It is a sad thing to admit, but I don’t. I wrote a poem about this shortly after diagnosis, in which I kept repeating the line, “body, tell me things!” I was pleading with my being, physical or otherwise, to give me a sign, speak up, and present to me in waking life or dreams that something wasn’t right.
I know my body will eventually heal. “You are powerful, Jeremiah,” my oncologist recently told me. Without wishing to sound pompous, I know this – I already knew this.
In this manner, trusting my body to heal, I know it will always recover. Even after multiple, multiple rounds of cell-killing chemotherapy, a drenching so great I am surprised I survived my two stem cell transplants after the chemical bath I received during my initial treatments, my body bounced back. But somewhere, somehow, it doesn’t communicate what I need to know beforehand, which is most important.
Body, tell me things!
Germ cell tumors, i.e., ovarian and testicular cancer, are hard to detect. Thus, they have often been called the “silent killers”. 19% of ovarian cancer cases aren’t detected in the early stages of development. Testicular cancer, being in the same family, is very similar. A “chest cold” is the symptom of metastatic lesions throughout my lungs; a seizure was my body finally communicating with me that the cancer had reached the end of the line.
Body, tell me things!
I want to trust my body. I want to know what is going on and developing within me. I am paranoid now. One day, I will exercise, usually in the form of cathartic dance/movement, and the following day my thighs hurt. Naturally, this makes sense; I had been dancing ecstatically 24 hours before. My mind, however, is wondering what else might be there or lurking below the surface.
Body, tell me things!
Sitting here waiting for results, I am in that place of treading water again. My MRI is scheduled for February 5, requiring a long wait. I don’t feel this is a life — no, I know it isn’t. Scans are three months apart. So, for 1.5 months, I have been delighted, I have been resting, I have been gaining strength, etc. The next 1.5 months are a time of wondering… questioning… fearing… dreading, sleepless nights, and days walking around trying to retain what’s left of my sanity.
Body, tell me things!
I want to slip back into that blissful state of nativity. The days, the years, all 33, when a chest cold was just that, when sore thighs resulted from exercise. The years in which I didn’t wake up in the middle of the night and dread the darkness because of all the unknowns it might hold.
I went to the treatment clinic today for my 6-month post-transplant immunizations. The stem cell transplants wipe the slate clean, literally, and I have to re-immunize myself. The schedule for immunizations is 6 months out, 12 months, and then 18 months out.
Going back to the clinic is so hard, even for something as quick, easy, and relatively painless as 4 injections. So many memories are contained in that building; every emotional and psychological up and down along the seemingly endless journey to getting better is linked to this place. Better, as if ‘better’ was some destination and I knew the general direction but had no map or even a sense of distance to gauge anything… or everything.
My salvage treatment, the chemo that was administered after the recurrence was noted and before the transplants, took place around this time last year. Today, when I entered the actual treatment room, the lighting was very similar; the way it poured through the windows on the eastern side of the building, bouncing off the individual treatment chairs all lined up along the wall… it was almost identical. I could feel my stomach turning with the memories that were percolating.
Time doesn’t seem to change inside the clinic itself. While waiting for my oncologist’s approval of my immunizations, I fumbled with some paperwork, but I was really observing, watching slyly life move around me. All the chairs lined up along the walls were full; each one held a patient. They added more chairs since my last visit. They even expanded the parking lot. If this was a restaurant, one might say, “Business is good”… in this case, the additional seating and parking just seem kinda sad. Some patients had visitors or family members. Some slept. Others stared at their phones, seeking a connection to the world that was, after all, a few paces away, but, as I recall, this proximity seemed like lightyears.
A barely audible playlist was turning out one feel-good oldie after another. The Beatles told me that the sun was almost here and had been an awful, lonely winter. The Beach Boys, singing in their beautiful harmonies, waxed poetic about how it’d be so nice to be older, and then they wouldn’t have to wait so long. Yes, that’s the type of world, so they told me, that they belonged in.
The nurses bless them all, check in on meds, and inform the patients about what they’re getting. They make small talk and tell jokes to keep things seem normal. I keep hearing them remind each patient that today’s the first day of spring.
There was a younger patient there, maybe a little younger than me. The majority of patients were older, so the younger one stood out. I bet I looked like they did; out of place, antsy, already keen on leaving but knowing the long treatment day and week are just beginning. They flipped through a worn-out, well-thumbed magazine, but I could tell, both by their empty gaze at the pages and being in that very same place myself, that their actions were just an empty gesture, a distraction, escapism.
Time may feel constant, or even stagnant, inside the clinic, but it is moving forward. I didn’t recognize anyone except for the nurses, and though I don’t know, I like to think that they, too, are resuming something that resembles a life. I like to think that they finally arrived at ‘better,’ even if, like my journey, they had to stop, ask for directions, change a flat tire, take a few detours, get lost again… Even if, like my journey, they are still en route, they can at least see the city lights on the horizon.
Birthdays are always an interesting point of reference to look back at time. They make a good starting place to look at a swath of years and note changes, growth, etc., to take one birthday, jump backward to the previous year, and look at the space in between.
On September 18, 2017, I turned 35 years old. Initially, I was not excited about the approaching birthday as the years from 33 ½ to 35 (from diagnosis to present) were lost for lack of a better term. This was my mentality leading up to the day — that that time was irreplaceable, gone, etc.
There are two ways to view this: as time being lost, with those years and months of being sick and in and out of treatment, or as something relative. I wasn’t even sure I would live to see my recent birthday. During the last round of high-dose chemo, when I was at the lowest point imaginable, I asked the night nurse if I was going to die. Feeling as I did, I was sure I wouldn’t live to see the following day, let alone my 35th birthday, which was only a matter of weeks away. Thus, the relativity of age, years, and time.
I awoke on my 35th birthday feeling more positive and ready — I had lived to see the day.
I’ve been trying to avoid dwelling on the past and revisiting the years before my diagnosis. However, I can’t help but remember significant moments, like birthdays, that were not overshadowed by poor health. Time now feels like it’s split into two distinct sections: before and after my diagnosis. But in reality, time doesn’t work that way; life is a mix of moments and events that all come together. Focusing on the present and fully embracing our current moments is essential. While there are events I wish I could erase from my memory, it’s impossible to pick and choose our experiences selectively. Who would we be without these moments, both good and bad? Who would we be without the nights we thought we wouldn’t survive and the mornings that surprised us by arriving?
healing is a circular path 