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)

The irony of April 1st

I went to bed last night, frightened of how I might awake today.

April 1st is the date I was diagnosed with testicular cancer in 2016. It is hard to forget such a date, naturally.

The irony, of course, is April It’s Fools Day, but no one forgets such a life-altering occurrence.

I awoke relatively early. I did not get up for the day, just remained in bed, not wanting to stir and disrupt the thought that was on a loop in both my heart and mind;

“I’m a f*cking warrior!”

It wasn’t one thing in particular that I was focusing on or directing this thought towards. Rather, it was the years since my diagnosis and all the trials I have overcome!

The image is my Scottish ancestral crest. The motto which circles the crest is Fortitudine, which means “with fortitude” in Latin. I am proud of this and have it tattooed on my forearm. Every day, I recognize that my own fortitude, courage, and bravery are greater than I will ever know!

Image credit: Unknown

Screenshots

I have saved many screenshots of text conversations over the past few years. I was sifting through these today, and they made me realize what I have been working on, what I have been passing through and growing with over the course of 3 years. It is good and very healthy to put things in perspective. I often feel that I need to be farther along, at a different place in my healing process, etc. I see clearly now just how far I have come. These thoughts are still present, some of them make up the core of my being and illness has merely heightened their presence. On the other hand, some seem almost frozen over in their place and might trickle out very slowly as rebirth unfolds. Maybe in this lifetime they won’t fully do so, perhaps the process will carry over… and over… and …

Two years ago

Two years ago, I returned from Mass General Hospital (MGH). My second stem cell transplant had wrecked me; it was brutal. “You really trooped through these!” said my oncologist. Though proud to hear such words, I was out of my mind and ready to be home. I spent the last 3 months in a small, sterile, seal-off hospital room, removed from the world (save for nurses and doctors), removed from fresh air, from direct sunlight… I just wanted to go home!

Initially, I met my oncologist at MGH every week. He was keeping a very close eye on me. Then we met every 2 weeks, every month, every 3 months… I have returned to the care of my oncologist here, in Maine, we currently meet every 6 months.

During this time, I was having scans (CT of my chest, abdomen, and pelvis and an MRI of my brain) every three months. Naturally, having experienced a recurrence just 6 months after the original/initial treatment, every set of scans sends me into a downward spiral of fear, anxiety, anger, etc.

Even now, having bumped my scans out to every 6 months, I am still sent into a tailspin when the time draws near for scans/tests. It’s the same with each round; fear, anxiety, anger. This is common, at least I’m assuming it is, for every cancer patient.

Today, however, two years out from my stem cell transplant, I learned that my CT scans (chest, abdomen, pelvis) are still showing signs of stability!
The peace that has set in with this knowledge is immeasurable!

I feel so very blessed tonight.

Lost

Over a decade ago, when life seemed easier in many ways, partly due to blissful naivety, I left Paris en route to Munich. There, I met with German buddies to make our way on another adventure around the British Isles. Though I had been there a few times prior, I hadn’t traveled by car, and I knew this would add a whole new dimension to our journey. The British Isles, namely Scotland, are my ancestors’ land(s). I was keen on getting off the beaten track, so to speak, and really explore.

The year prior, or perhaps two years prior, we met up in Zurich, where I studied then, and set out to explore Italy. Both journeys were full of spontaneity and, naturally, considering our ages, delicious German beers. Heavy drinking aside, each journey graced us with limitless possibilities. Cliche, perhaps, but we each grew throughout our adventures. Of course, this is only in hindsight, as always, and one looks back on such voyages with a sigh and a smile, retracing not only the steps that we took then but the steps that lead each of us to our current places here and now.

There were many laughs along the way, which weren’t due to the beer; in some two or three cases, it took up more space than our luggage. We encountered some caravan-dwelling folks in Calais who seemed to live in a clown car of sorts, as each time we turned around, there was another… and another… and another. Each one disembarked until their numbers were excellent, and we soon realized that their intentions were not as friendly as we had assumed… blessed naivety. When we needed, which was often, we slept on beaches when the weather was “nice,” an” hud” led under the car, an old Mercedes (which is probably still going vital to this day) when the weather took a fowl turn. One of their friends, studying at Oxford, invited us to stay in his dorm room, which made up for the nights sleeping under the car. We cooked white rice over a camp stove and added ketchup to flavor it… a delectable meal, even if the rice was crunchy. We crossed over the Irish Sea on a late-night ferry from Holyhead. The ferry seemed almost empty at this godforsaken hour, and we sprawled out in the passenger lounge on hard plastic seats to catch a little rest. Rest evaded me as the rocking of the ferry made me queasy.

Somewhere well south of Dublin, we were driving along a double-lane highway which, seemingly instantaneously, turned into a sort of country lane just wide enough for two cars to pass. From there, it tapered off into a single lane, then a dirt road, and then a path that, I presume, was made for a tractor or other such piece of equipment. I am not sure if it ended together in pure Irish countryside or not… Had the roadmap been used more regularly, it would have consisted of major roadways, highways, etc. Still, this little dirt track wasn’t wasn’t make matters more interesting; our dual language road map was perfect for a German- or English-speaking traveler wishing to stay on the main autoroutes. Still, it was not helpful in our current situation. All the signs we could see, some just propped up on rock walls, others, which seemed to point in a random direction and undoubtedly acted more as weathervanes, swiveling this way and that even in the gentlest of breezes, were in Irish (Gaelic).

In the middle of seemingly nowhere, we came upon a small cottage. It was an idyllic, postcard-worthy scene. After a brief discussion, it was decided that, since English was my native tongue, I would speak with whoever was there — if anyone at all. After knocking on the door, I paused momentarily to admire the houses. I also wondered how one might live here in what seemed to be the middle of nowhere. When I was about to leave, the door opened, and an older woman greeted me. I can’t imagine how I looked, considering we had been sleeping under a car and consuming white rice with ketchup-washed-down beer for the better part of 2 weeks. But she didn’t seem to notice or care. I presume she had been watching from a window, studying the car with German plates and the three bedraggled boys.

“Good afternoon,” I said, “I’m sorry to bother you, but we’re lost.”

She smiled warmly.

It wasn’t until later that I began considering my comment and her potential interpretation. Here we were in what I called the “middle of nowhere”, but to”her it was home.

Lost
Past and past participle of loss.
Adjective: lost
Denoting something that has been taken away or cannot be recovered, e.g., a lost opportunity.

It isn’t that this opportunity is lost forever; it is simply that such tidbits of wisdom only arrive when one is ready to receive them. The opportunity will repeat itself in various ways and forms until the knowledge is seen and accepted.

This journey of illness and recovery is an opportunity, right? Occasionally, I get glimpses of this, and a blissful warmth runs over me. Then I slip backward and become bitter at seeing something that has caused so much pain and suffering as a chance to learn and grow. Couldn’t I have learned this differently?

I awoke to a text from a dear friend of mine. She has been a source of endless support, care, and love during these years of both illness and recovery. She spoke about the destination and used the analogy of building a stone path and how I’m looking far ahead to some distant point. In turn, the stones I’m laying down to build the path are being overlooked in my haste, in my desire to arrive at some terminus just out of my reach. The task is daunting, too. Building a path that stretches for miles and miles leaves me angry and thus depleted. I realized the stone path I had been laying could barely be considered a path. It’s a twisting and winding mess leading here and there, running wildly in every direction, chasing every possibility, seeking out any and every venue in hopes that one thing, that anything, will relieve me, nourish me, heal me…

I have been wondering about this notion of being lost, of being somewhere neither here nor there and struggling desperately to find the way — any way, for that matter. How might it be if, by chance, I stopped desperately trying to find a way? Or, rather, as it seems, I’m after one in particular. What if I stopped giving a damn about the stone path all together? What if I stopped giving a damn about direction? If I just sat here, then what? To me, the construction of a path is a sign of strength and courage, forging boldly ahead in the face of it all. Even if I see the path as rambling madness running off in every which way, I still view it as such. What if I ceased the exhausting construction of this path? What if I just let it be? What if I just was?

Osho, an Indian spiritual guru and philosopher, said, “Be — don’t try to become.” I have spent far too much becoming. Becoming healthy. Becoming happy after such turmoil. Becoming whole again. Becoming. Becoming. Becoming. All of these are so close, just out of reach — just there.

If I become this, then I’ll have that. What a very strange equation.

This is the opportunity, the tidbit of wisdom that has arrived. Perhaps it has come a few times, and I simply wasn’t ready to be open to receiving it.

The warm smile from the older lady in Ireland was reassuring and comforting. Now, after so many years and countless experiences, I wonder if she was smiling because she knew I wasn’t lost then and that, in actuality, there is no such thing as being lost at all.

The body

For years, I didn’t like my body. For the majority of my life, there was this sense of guilt or shame about how I looked and felt. As a result or product of, I am not sure, there was an internal struggle, a sort of emotional and spiritual dissonance within that which I can only refer to as the soul.  

The body and soul were awkward, each attempting to adjust to one another, the physical and metaphysical working their way into a partnership of sorts. In one’s formative years, this is a time of great physical and emotional/spiritual strife. From my childhood until recently, this lingering sensation of turmoil always seemed to be.  

Much of this stems from the labels and ideas thrust upon us by the society and culture into which we are born. It is hard to adjust and figure out our way through the swamp of ideals and morals, beliefs and philosophies that aren’t necessarily our own – in fact, they seldom are, as we soon discover, they are simply handed down piece by piece. In such a way, they become like the game a telephone might play as a child. One person starts a phrase, and it is passed around or down a line. The end product is usually some bastardized version of the initial statement. The awkwardness of soul and body, this feeling of discontent, eventually brings us to the point of either acceptance of the societal and cultural default settings or forces us to step out in hopes of discovering that to which we are drawn by some force and/or inner seeking. Both take courage, neither one can be deemed good or bad, right or wrong etc.  
Amid treatment, during the first rounds immediately following my diagnosis, I stepped out of the shower one morning and stood before the mirror fixed to the opposite wall. There, in front of me, was my naked body. My hair had long since fallen out on my head and my entire physical being. I looked like some prepubescent boy with the face of a middle-aged man – a face exponentially haggard by exhaustion, stress, anxiety, etc. My eyes were sunken, tired, and sad. They, my eyes, have always held every bit of my worry, fear, joy, passion, etc. I looked at myself; I stared at the body before me. I stood still and let the feelings and sensations (some of which I haven’t found a suitable word for) pulsate from my core.  

It was the first time in my entire that I felt a sort of love, admiration, and acceptance for myself – for both my body and There was an incredible level of sadness and anger, and there still is – of course. Only a fool will tell you that love ousts hate or that bravery trumps cowardice. One cannot exist without the other, and their equality and power are matched 1:1. Ultimately, about all personal decisions.

I stood there. My fingers traced various lines and ran over my bloated body, puffy from steroids and other drugs administered during active treatment. 

The orchiectomy incision looked back at me. I hadn’t looked at it since the operation and commencement of treatment. There was a part of me that didn’t want to look at it, to admit that it existed, or to deny the fact the surgery had taken place.  

Afterward, I let my fingers wander over my body, from the top of my bald head to the sunken sockets holding my eyes, over my flabby belly, and along the scar that marks the right side of my groin. I let my arms fall to my sides. I remember distinctly looking at myself – really looking at myself. I never wanted to. The body, my body, was just something. Embarrassed as I am to say this, I viewed it as some form that I had been plagued by.  

Beyond the fleshy, bloated being is where my gaze eventually fell, where it entered. How could it not? That is where all the lines I traced on my body were leading. As with the physical body, I didn’t think I was ready to honestly look or hold myself in that manner. But given the circumstances, the nand tire situation I was in, how could I not? 

I have always been curious about the soul. The notion of it as a thing, for lack of a better word, fascinates me. I see it as something continuous, an ongoing form of energy, something that doesn’t end when the physical body holding it passes. The idea of the soul as something “eternal” stems from my catholic upbringing. As with my physical body and the shame and embarrassment I felt towards/about it, I felt something similar towards my soul. My physical body might lead to sin – to enjoyment and lust. My soul was a mere breath or thought away from damnation.  Damned might I be should I enjoy my own flesh, my body – the sacred house of my soul! Damned might I be should I steer my soul on a course of my own choosing to embrace the free will I was taught so much about.

It took me nearly 3 decades to look at myself and appreciate the strength of my body and soul. It took almost 3 decades to look at myself, to behold myself, body and soul, and to give thanks.

Despite the anger and bitterness, and sadness, gratitude exists. Though I might struggle daily with my mental and emotional well-being, I’d be genuinely damned without appreciation.

The photo is a still from a performance video I made in 2012. Through my visual art I was always trying to articulate my feelings and beliefs about the physical and metaphysical. Through art I sought to examine this relationship and express that visually which alluded me in every other form of expression and means of communicating. In this video we have two beings; one that remains still, eyes closed. The other worked furiously to wrap and eventually unwrap their head with string. The being with their eyes closed is actually the one seeing, the one that is fully aware of what is going on internally and externally. The other being, the one wrapping their head with the string, is the being trying to figure out their place within everything, to literally untangle the mess and confusion in which they find themselves.

The gardens

I am not sure when I began gardening.

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.

Blissful Relief

Tumor markers were drawn last week, a few days prior to my MRI. After receiving the results I was a little concerned as there was an elevation in one (of three) tumor marker levels. I was riding the wave of positive news regarding my MRI results, so didn’t want to fixate too much on the blood work. Long story short, the labs are fine! The rise in one of the markers, which is slightly above the normal range, is totally normal (according to my oncologist) and has a tendency to fluctuate.
I can rest easy now – and I certainly am. After the news regarding my MRI and blood work I am completely drained, yet blissfully happy!

Body, Tell Me Things!

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.

“2nd line chemo”

Tomorrow, March 13, 2017, I will begin salvage chemotherapy (AKA “2nd line chemo”). I had my “Smart Port” placed on Wednesday. Initially, I was scheduled for a PICC line, as with prior treatment, but the port requires much less maintenance.

I spent the better part of this past month researching alternative routes. Naturally, more chemo was the last thing I wanted. … but this is it. Yes, there are phase II or II studies, but as such, these wouldn’t be covered by my insurance. Also, since some are still in the relatively early stages of development, the outcome is even less specific than salvage chemo / high-dose chemo/stem cell transplant.

I am trying to refrain from looking that far ahead.

I have to begin with this option, at least. Trust me; I was tempted to buy a one-way ticket to some random, far-off country. I still entertain this idea in daydreams – I won’t lie. However, I must at least begin this, try it, and hope for the best.