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.
Over the past few months, various events or things have triggered me.
Some are minuscule, such as a sound or smell that will set off several memories. Others are more significant, a bodily sensation, an ache, cough, or the like that provokes a more powerful emotional/psychological response.
I note these reactions, a tactic I use to help ground myself. From there, I can move forward, understanding more about it (the trigger) and my relationship with it. If I can, witnessing myself is the trick; detecting what is occurring before being consumed.
The milestone of the five-year cancer-free mark is not an exemption from fear and worry. Sometimes they peak at the same level they did while amid treatment – periodically even more so.
Nights are difficult. Anyone who has experienced a tumultuous and life-altering event can attest that this is when the little dark fears emerge from the woodwork.
A few weeks ago, I returned from Samsø, Denmark (see the previous update here or blog post on thiscyclicallife.blog). A small island with under 4,000 inhabitants, nestled snuggly off the Jutland peninsula. Though it has several adorable little towns, the 40-something square mile island is used primarily for agricultural purposes. To say that it is a walkers’ paradise is an understatement.
When I am state-side, I often sit with these “little dark fears” only to a certain point. It wasn’t a bold pursuit or some other brave endeavor that granted me the time and pace to do so on Samsø; it happened as if on its own.
One night, awoken by worries and fears, I dressed, grabbed my raincoat, and walked. It was almost a knee-jerk reaction. As I joked to a few people, the beautiful thing about an island is that you can’t get lost; you ramble through fields and upon well-worn tractor paths, and sooner or later, you’ll encounter the ocean.
Every evening I filled my rucksack with: a rainjacket, another base layer, extra socks, a flashlight, a field recorder, and bread, butter, and honey, just in case. Then, I’d begin walking if I woke in the night, regardless of the time and conditions, to discover that the fears were present.
State-side, if my worries and fears become too great, and my audiobook or music doesn’t cut through the mix, I’ll bust out trusty ol’ Netflix. I didn’t have such distractions there. Though I purchased a Danish SIM card for emergencies, I didn’t carry my phone or bring my pre-downloaded audiobook.
Bringing the field recorder was the best decision. I didn’t intend to record myself, but I’d sit on some slight rise or the beach and try to collect my thoughts and gather my ideas while talking aloud – a practice I began while in school as it helped me work out ideas. My words were wandering much in the way I was rambling physically.
I have a project in mind for the recordings. Though what follows are some excerpts and snippets I pulled that I found revealing.
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I move forward in this place (of recovery)
A beacon pulling / a signal drawing
Being held – here
I have learned to live with the memory of you [cancer], as one does with something that echoed, a thing that came.
The lights of Aarhus could be another world – a gentle glow (western paling sky). Aarhus could be Boston from here – Mass General could be anywhere. I could be anywhere. I am here.
Birds; two, then three, then 4, and 5 (a dance that says ‘we are together in this; we heal together.’)
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.”
I have dreamt dozens of times that cancer has returned. Not testicular cancer, not necessarily, just cancer in general.
The other night, I awoke, and, having fallen asleep on my arm, it was numb from the shoulder down. This, too, has happened numerous times, but I am always so shocked and horrified that I sit straight up in bed each time, flop my numb arm over my lap, and await as it comes back, as it awakes as well. I hold my breath. In the middle of the night, I sit in the dark, cradling my arm and waiting. When I feel the gentle tingling sensation return, the soft pins, and needles that signify it has awoken, I lie back, relieved. It is then, and only then, that I realize (the) cancer hasn’t returned. Another lesion hasn’t formed in my brain. I don’t need brain surgery.
Incidents such as this are not uncommon. This is but one example…
This fear lurks; I feel as though sometimes it is stalking me. Other times I know that, at this moment, I am cancer-free, it is out of my system and a thing of the past. I am torn between these two worlds of quaking fear and joyful bliss.
I recently had a conversation about this very feeling, about how I feel that I am often shadowed by cancer, that it is pursuing me. I was unaware of its presence upon initial diagnosis. When struck by the recurrence, I was completely oblivious as with the first time. So much so that when my oncologist told me it had returned, I was in denial. Naturally, anyone would be dismissed, as this is the last thing one wants to hear after being treated once. When I was informed, I felt 100%; my body felt so strong and healthy. I wouldn’t believe it – I couldn’t accept that it had returned. Regardless, it had, and both times it snuck up on me and pounced. I blinked, and it was upon me; claws sunk deep, and I was helpless.
I suppose this is just something that lingers. How long is uncertain. Perhaps it will always shadow me. I hope it will do so in such a way that it is not hunting me, or for that matter, haunting me, but a reminder of what has come to pass.
Patience! I need more patience with myself as I move along this path.
Traveling does wonders for the mind and spirit. Each traveler has such a unique and individual experience; this is where the power of exploration lies.
It has always been a way for me to reflect. I can step back and observe my life from a different perspective. It has a meditative quality in that I, from that place of outside observer, can sit with choices made, actions taken, or even, more importantly, choices at hand. It may be because when traveling, I can just be. I can strip away the layers and titles and personas and simply be. In doing so, it is easier to stand back and look at one’s life, the past, and the present. Without the smothering layers of what one is, what & how one should be, etc., things become more straightforward.
My sweet and generous mother lumped my graduation, Christmas, and birthday gifts to allow me to travel a bit. She would say that my graduation gift would be a ticket somewhere- anywhere when all was said and done with my illness, and things stabilized enough. We both held onto the idea of future travel and that I would one day return to the carefree, vagabond lifestyle I once lived. Her gift allowed me to rekindle a sense of independence I was unsure I’d ever have again.
I felt so fortunate; this giddy, childlike joy rose in me. I have a thirst for traveling, and after three years of a life revolving almost entirely around medical appointments and clinics, my great thirst was finally quenched. Naturally, because of said health issues, panic, stress, anxiety, etc., were never too far behind. Mostly, these anxiety and stress issues revolve around my seizure activity. If a place is too busy or overwhelming, I become anxious and, in turn, stressed that the anxiety will trigger a seizure… It’s a bit of a downward spiral unless I catch it beforehand and keep calm. At times, the anxiety levels were rather acute, though certainly a small price to pay for the ability to travel once more.
However, there was also this other feeling, too. Something that had yet to present itself sent a different swell of fear and anxiety through my being. I felt a nervous tingling running alongside the feelings of glee and gratitude. It was an emotion thus far unfelt and one I could not label.
My favorite way to travel is walking. City walking is excellent, but I’m referring to setting out on foot and just… walking. Many of the paths I choose are well-worn footpaths that often pass through many small villages and cities that are well off the tourist itinerary. These, to me, are where the authentic culture lies.
During this trip, I set out from a small city in southern France along a footpath used by pilgrims walking to Santiago de Compostela in northwestern Spain. On other adventures, I have walked different parts of this same route; however, those were within Spain.
The term pilgrim might have been used once to denote a monk or other religious devotee trekking hundreds of grueling miles to reach a small shrine or holy site. The modern “”pilgrim,”” however, is trekking for several reasons and not solely those of spiritual devotion.
I initially went to Le Puy en Velay, a city in southern France, because I had heard about it in 2006 while traveling in Spain. A Frenchman told me, “You must go to my hometown, it is beautiful!” If anyone speaks highly of their hometown, I should visit. While there, I came across a symbol that has guided pilgrims for hundreds of years across various parts of Europe to a city in northwestern Spain. I used the same symbol, a scallop shell, that I followed instead during my many treks to the same destination. The saying “all roads lead to Rome” can easily be said about the numerous footpaths across Europe; all paths lead to Santiago de Compostela.
I believe in such events and other serendipitous occurrences in one’s life. So, with minimal hesitation, as usual with my travels, I packed my rucksack and started walking.
Walking is all about allowing the mind to enter that previously mentioned meditative state. The reflection, at least for me, begins with the rhythmic movement of the physical being. After this, the mind follows suit, and the pattern begins to move in a spiritual direction. It is also about passing through quaint little towns and cities, many of which still need to be jaded by the onslaught of tourists. This is really why I love it.
It is also very hard. I’m not talking about blisters and a sore back; I’m talking about the mental and emotional side effects that the simplicity of walking stirs up. In the past, this was precisely why I would walk. To me, it is a purge. After a long, challenging semester – walk! After a shitty breakup – walk!
However, this time, the difficulties were beyond those of a sore back, and blisters emerged. The darker emotions that ran alongside the glee and gratitude, that which had yet to present itself, the feelings that were thus unfelt … These are inescapable and were in my rucksack.
Somewhere, neither here nor there as these treks often go, those things crawled out of and stood before me, blocking the path, any forward movement, and hindering any advancement of mind and body. Literally, I was unable to take another step. I could feel everything within me shifting and pulsating like I had spent the last several miles ascending a peak. I wasn’t sure how to react or what to do. I began to think I had hit a wall. This would make sense, considering my deconditioned state from my years of relative inactivity. I removed the water bottle from my rucksack’s side holder and had a long drink. After that, I removed my hat to run fresh water over my head, thinking this might revive me and allow me to set out again. As I did so, my fingers ran over the scar, the wrinkled creases and little divots where my brain had been operated on. I paused, then I began howling and screaming, “”I had fucking brain surgery! I had fucking brain surgery!””
I cracked. I broke down. Right there, between somewhere and nowhere in southern France, I broke along an ancient footpath upon which I had spent the entire day briskly walking. I crumbled slightly and then came crashing down! That which hadn’t presented itself stepped forth, looming over me.
The weight of three years fell upon me; fear, pain, both emotional and physical, anger, and despair…
The weight of spitting into the sink and seeing blood.
The weight of the first seizure in Chicago and subsequent diagnosis.
The weight of my MFA studies was disrupted just weeks before graduation.
The weight of endless nights full of fears, of waking from nightmares, of waking up both enraged and saddened simultaneously,
The weight of looking at myself, at my reflection in the mirror, when I was bald and bloated, a gray form with sunken eyes stood there looking back. A figure trying to come to terms with life, trying to put the pieces together in hopes of making sense of everything.
The weight of my girlfriend at the time looking at me with loving and compassionate eyes, but also fear and longing for us to begin something that we had barely just started.
The weight of being told that the cancer had returned only six months after initial treatment, six months after my life was gaining stability.
The weight of postponing a course I was set to teach only days from the news of my recurrence.
The weight of a stroke and the brain surgery that followed.
The weight of an entire summer spent in a hospital room, cut off from the world, spending each day and night in a chemo-induced nightmare, praying I’d make it through two back-to-back transplants.
The weight of the seizures returned shortly after my transplant, rendering me a fear-filled recluse, scared of walking down the street without being full of Ativan.
Right then and there, I fell apart in every way imaginable.
I cried. I cried so hard and wailed so much that my throat hurt. I don’t know how long I cried. I heard myself screaming, but it didn’t sound like me; it was deep and guttural, animal-like and completely unnatural. I don’t know how long I have remained in this state. I was shaking, both from the fast-approaching night and also from the overwhelming emotional release from crying so much.
After that, I must’ve been in a state of delirium because things were hazy and did not add up; time seemed distorted. I’m sure many gaps will be filled with memories over the coming months. I remember an older French couple, Louise and Clément, who must have found me while trekking. I remember Louise was giving me tea and cookies, but I couldn’t hold either down, so I kept getting sick. We had reached one of the many hostels along the route. They had wrapped me in a blanket and dressed me in a thicker woolen shirt. Eventually, I was able to sip tea slowly. It began to warm me, but I couldn’t manage the cookies yet. I just kept hugging Louise and crying. She must have known I spoke sufficient French to maintain a dialogue and told me they had found me only a short distance from the hostel. I was kneeling on all fours, pack still on, in the middle of the path, crying and screaming. Her hand movements and gestures showed me that it was more than just crying.
The tea was warming my body, and my head became more apparent. Things started to make a bit more sense. I remember the invasion of emotions and thoughts and how it felt as if they were choking me; I remember physically gagging.
I remember having this desire to tear open my own body, to open up my chest cavity and remove something, to get it out– to pull out every last bit, piece by piece of it; I envisioned strands of hair-like substance. Though what it was exactly, I didn’t know.
Perhaps it was due to my crying, but it seemed I had reached a sort of hallucinatory state where strange and nightmarish events were happening. I felt like I was falling but never reached the ground; it was this continuous feeling of vertigo and the constant fear and uncertainty of when or if I would make contact with the ground. In another Hallucination, I could barely move my legs, but they were stuck, being held back by something. These hallucinations were broken up by my sobbing as if my crying was holding them back.
I was lost in a terrifying daydream,-state recalling all these events when Clément Sat down beside me and said, in English, “”We go now to the hospital.””
They put me in the backseat of a car, to whom it belonged I did not know, and then they covered me with blankets. I drifted in and out of sleep, only waking now and then to hear them speaking softly. The warmth of the blankets and the sound of French, which I always found soothing, pushed and pulled me from consciousness.
My sleep was tormented by nightmares; however, again, they were filled with strange hallucinations of being in a room where my thoughts were echoing, reverberating within the space. I was not speaking aloud, but I could hear my stream-of-consciousness- thoughts within the room.
Again, I had this desire to break open my chest and pull forth some substance. This was the strangest of all my hallucinations. I could feel my hands both upon my chest and moving within it. I don’t know what I was seeking or hoping to find therein; I just knew I was looking with a frantic desperation for something.
I deduced later that The Louise and Clément found me just outside Golinhac. So it would make sense for us to go to a hospital called Rodez. At the time, however, I didn’t know where I was.
They sat with me in the emergency department until I was admitted. I kept holding Louise’s hand. Now and then, she would give mine a gentle squeeze so I would know she was there.
Nurses drew several vials of blood, and the doctor ordered an MRI. Several doctors came in, shook all of our hands, and then proceeded to ask various questions. Louise held my hand throughout it all and gently squeezed it now and then.
The Psychiatrist introduced herself as formally as everyone else had. We spoke at length about all that had happened, the feelings and thoughts, my health history, life, and family dynamics – it seems the questions were endless.
At this point, I was close to tears and had already broken down several times during the conversation.
Evidently, I didn’t pose a threat to myself or others, so they allowed me to stay in the room I was in. After she left, I heard her speak with Louise and Clément Just outside the door. When they came in, they said they would be back in the morning and hoped I would be able to rest. Clément had family in Rodez, so they wouldn’t be far if I needed anything.
The following day, one of the doctors entered the room. He said the MRI was okay, which I knew as I had one recently in conjunction with my CT scan for routine cancer screening. The bloodwork was also regular. I knew this as well, but I also knew they were screening for illicit drugs. That didn’t surprise me, considering the state I was in upon arrival. Even though many things were becoming apparent, I wasn’t entirely sure what state I was in or how I acted when I arrived the night before. How was I acting? How did I look upon arrival — how did we look upon arrival? This older French couple brings a foreigner into the emergency room at night. A foreigner who was sobbing and describing surreal, nightmarish-like events. A bleary-eyed foreigner undoubtedly speaking a mixture of gibberish, French, and English… It only makes sense that they would order toxicology screening.
I drifted in and out of sleep. Louise and Clément arrived and looked tired; nonetheless, their eyes showed compassion.
Louise Brought in cups upon cups of tea. I don’t know if she really enjoyed tea or if she was still concerned that I needed to be warm.
The Psychiatrist arrived sometime later and, as formally as ever, as though she were just meeting us, said good morning and shook our hands. She asked how I felt and nodded understandingly when I mentioned how tired I was. She spoke at length about her theories regarding the night before and the state I was in upon arrival. Much of it was lost on me as my head was still fuzzy from the previous night’s events and the tiredness that seemed to intensify. She described it as a nervous breakdown, a dépression nerveuse. She studied me as though looking for an understanding of her words. I just nodded. I tend to do this; I just nod when the subject of my health, mental or physical, arises. She nodded as well, and this became the language we shared.
With that, she began asking logistical questions about my stay in France. When I told her I was leaving Geneva on October 23, she looked relieved but a little concerned. Then, she proceeded to ask several questions regarding my travel plans. It was evident her feelings were mixed both about my upcoming travels as well as the fragility of my mental health. She kept her gaze fixed upon me. I remember looking away several times only to look back to find her still staring at me with such intensity. This unnerved me. However, each time my eyes met hers, it seemed as if she was trying to understand something; it was a questioning look more than anything. There is so much haziness around my stay in the emergency department, but I am sure about the depth of her attention on me.
Louise and Clément lived in Lyon and invited me to stay with them until my departure. They were also comforted to hear I would be leaving from Geneva instead of Paris or some other airport requiring a lengthy journey.
Breaking her formal manner, the Psychiatrist placed her hand upon mine, resting in my lap, and said, “It is no wonder this has happened; I am surprised it is just occurring now.” Perhaps that is why she held her gaze upon me with such unwavering intensity; maybe she was trying to find any words that would help explain all of this to me.
Oddly enough, this seemingly simple comment made me feel better. It validated something inside of me. Though unclear, it began dragging things out into the light. Not everything, of course. Events and emotions will present themselves over time, but they will do so nonetheless. They will do so about this particular incident, the illness, and the life I have constructed around it. The wall had been breached, and this breakdown was the catalyst… it only took a horrific experience and the guidance of two strangers who bravely stood by, never once questioning my emotional or psychological state. Two guardians who seemed to understand the screaming, sobbing, and guttural language I was speaking. Two caretakers who continuously brought me an insane amount of tea!
Her comment let me touch down; the continuous fall, the constant vertigo, began to end. The multiple voices within the room – my own unspoken voices — began to speak clearly, presenting as one solitary voice with which I would one day learn to communicate. My legs, incapable of moving, those being held back, shifted slightly – ever so slightly – a barely perceivable amount. The unknown thing I desperately wanted to rip from my chest… this will take more time to understand and come to terms with. I’m okay with that. I’m patient, and I am certainly not going anywhere.
She was tagging them, defining them, placing a label on them.
When we label something, we are forced to recognize it. It is no longer something, but rather, in this particular context of the psychiatrist’spsychiatrist’s comment, a matter of permission. I am permitting this to happen. I am allowing this to take place. I am relinquishing control. I am letting go.
I’ve always perceived letting go as a weakness, the antithesis, of course, being a strength. I would stubbornly hold on; I would not be weak and fight to the bitter end to prove it!
My stubbornness led me to the emergency room in Rodez, France.
She could have quickly said, ”It is no wonder this is happening; I am surprised you’re permitting it to do so now.”
I want labels. I want to define things to recognize, grow, and heal from them. At least then, when I fight to whichever end comes for me, I’ll know what I was fighting for.
My return… How would I make the journey back to the States? Who would I turn to for help and comfort? Who would watch and allow me to open as Louise and Clément had? Now, just two days until my return flight was set to depart, with the recent events still very present and raw in my mind and soul, I felt frozen with fear. I felt alone. I felt alone in so many ways. In the presence of Louise and Clément, I felt safe and comforted knowing, not only that they were there with me at present to protect me but that they had seen me in the state in which they had found me just a few nights before.
I wrote to my older who, thanks to the gods, was also in Europe at the time. She had seen me in tears many times throughout my journey with illness; she had never seen me in my current state. Though the dépression nerveuse allowed the wall to be breached, I was presented with yet another wall. Advancement is happening, but the process is slow.
Within 12 hours, she was in Geneva. She had changed our tickets and arranged everything to ensure our journeys home would be the same. I would have needed help to make the trip. I held her hand the entire way, from Geneva to Heathrow and onward to Boston.
This is a form of letting go. This is relinquishing control. Another part of the wall, or perhaps a wall in and of itself, permits others to offer assistance. I am stubborn; as mentioned, it is hard for me to accept this. I have always relied on myself to manage various situations in life as I find others to fall short when called upon. Louise and Clément showed me that self-reliance isn’t always possible; sometimes, help must be accepted. They showed me that help and care come from a place of unconditional love, too.
Just as Louise held my hand throughout the dark night, gently squeezing it now and then so I would feel her presence, so too did my older sister when she guided me home.
healing is a circular path 