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.

The elation I felt…

Trigger warning: This post deals with issues such as depression and mental/emotional breakdown.

The word “met” refers to metastatic cancer.

The elation I felt after these recent scans was overwhelming! When my oncologist said that we would move the scans to every 6 months, as opposed to the quarterly schedule we had maintained since my stem cell transplant, I cried. When I have broken down in front of him before, which I have done on numerous occasions, it was due to negative news or concerns he had. This time, however, the tears resulted from pure joy and happiness!

I was shocked when he told me this, completely speechless. When he entered his office, I braced myself. The 2nd to last scans performed in August revealed “nonspecific nodular change” on the largest pulmonary mets. Though things were “stable” then, it was still cause for worry.

This is the area where the recurrence was detected in early 2017, so naturally, it was worrisome.

I didn’t tell anyone. Not a soul. I said things were stable, but I didn’t mention the change.

We would “keep an eye on it”; that was the plan. We’d see how things looked in three months and how they appeared after the following scans. These were the parting words after my appointment in August – we’ll just wait and see.

Three months! For three months, I wondered what might be occurring within my lungs.

Those who talk about “being present”, living in the “now”, etc. are full of shit. When you’re told that there is a slight change in size in one of the mets on your lungs and that it might be growing, but we’re not sure, so let’s wait three months to be specific, you’d be leaping into the future and entertaining every possibility imaginable. Anyone would be anywhere BUT “here and now”; their minds would be bedeviled by worry and fear. Even Siddhārtha Gautama would be shitting himself.

Several months ago, an MRI revealed that there was potential growth in the met in my brain, the one that was treated with radiation therapy in 2016. It turned out that it was just swelling and that there wasn’t any growth. My mind kept reminding me of this incident and that perhaps the supposed growth in one of the lung nodules was also the result of swelling…

I was informed of this “nodular change” on September 16th, the day before I departed on what I had hoped would be a nice trip abroad for my birthday. The tickets had been purchased well in advance, and I was going regardless of the news I had just received.

I thought taking a short vacation would be nice. After hearing the news about the nodule change, I felt a sort of urgency to leave – in fact, I wanted to run away and be as far away from everything as possible.

While abroad, I began to “live it up”: lavish AirBnBs & private hotel rooms, extravagant meals at swanky restaurants, fancy new attire for my nights out, etc. My mentality, as morbid as it might sound, was, ‘fuck-it, if this is my last go-‘round, I’m sure as hell gonna enjoy myself!’

I prolonged my stay. I didn’t want to be home; I didn’t want time to sit and think about the possibilities and entertain the what-ifs that have plagued my thoughts since my initial diagnosis.

Naturally, all the fancy hotels and fine dining couldn’t keep the torrent of thoughts and worries at bay. They were creeping in. I was losing sleep, and, as a result, my already fragile psychological and emotional state began to further weaken. I didn’t recognize who I was becoming; I started lashing out at people, hurling accusations at friends, displacing the intense feelings of anger and sadness. I couldn’t bear the thought of a recurrence, of further treatment, and was spiraling out of control from the fear and stress I was experiencing. On top of that, amid this storm sweeping me away, I couldn’t find the words; nothing made sense, and I felt alone.

I just wanted to be held. This desire kept returning to me. This need and wish to be wrapped up and held securely was almost childlike. I didn’t want to dump the emotional weight of my situation onto anyone… I just wanted the comfort of prolonged embraces.

The stress and fear was too much. It ended with a hospitalization in Rodez, France. I experienced a nervous breakdown. After 5 weeks of traveling and doing my utmost to push away the anger, fear, and sadness that had sprouted from recent test results, I fell apart. Touching the scar from my craniotomy set into motion an avalanche of emotions, the likes of which I was entirely unprepared to manage.

My mother was the first person I told. I only spoke about it because the report from the most recent CT results mentioned the stability of all pulmonary nodules, including the one that presented with nonspecific changes 3 months prior. This would have been noted in the findings if it had been grown.

She didn’t understand why I didn’t tell anyone. “It’s too much stress for you, “she said, “you shouldn’t have been alone in this!”

I was alone with this knowledge and knew that a change had been detected in the August scans. I didn’t want to say anything because I didn’t know how. I am not good with communication; I have repeatedly repeated this. It isn’t that I’m not opening up, as some have told me; I just find spoken words strange and cumbersome. They don’t align themselves with my thoughts or emotions. Throughout my entire journey with cancer, I have felt at a loss for words. Even in writing updates and maintaining my blog, I have thought that the words I choose are so close to expressing what I need… but fall short every time. They lack the substance required for specific emotional experiences and psychological states. Before diagnosis, I could easily find the words needed to articulate my feelings and express myself. After being discharged from the hospital in Chicago, after being told I had cancer and that my life had been drastically altered, I immediately discovered that words no longer added up. Initially, I thought it was due to several things: stress, fear, seizures, seizure meds, and sleep deprivation. I considered these while packing my belongings and preparing for my return home for treatment. I was tossing clothes in bags and ditching possessions, all the while I was trying to understand why I couldn’t connect my thoughts and emotions with the words I so greatly desired. This ineptitude has continued and hasn’t diminished with time.

The knowledge that everything is stable has brought an immense feeling of peace that has evaded me for far too long. The serenity that has arrived has lessened the pressure I have been putting on myself in many aspects of my life. I want nothing more than to find the words needed to feel a sort of connection with others. Perhaps one day, they’ll arrive when the dust from all this has finally settled. This is the area where I live in the “here and now,” where I am fully present. I’ll be with it daily, moment to moment, and I hope the words will eventually harmonize with my thoughts and emotions.

Discourse

I had a recent and brief exchange with my uncle after a recent post about life, its potential pointlessness, and the struggle to find meaning.

(Chris)
Interesting ruminations! I think that Tolstoy’s outlook is pretty pessimistic. I believe that life has a purpose, but I don’t necessarily
believe that your illness has anything to do with it. Your purpose may be to help someone later in life, maybe to have kids, work with people experiencing poverty, invent, write, or draw something important. Maybe this three-year period is just a detour that has nothing to do with that. I don’t know!!!
much love,

(Jeremiah)
His outlook certainly was pessimistic… but I feel that was the impetus for his spiritual pursuits/awakening. He had to fall into that place of despair to arrive. I guess, the way I look at it, I was already en route to these things; in my last semester of grad school, I was going through interviews with the Peace Corps to work (with people with low incomes, perhaps) in Albania. I was writing … I was drawing. I think that a detour that goes on for three years is a bit excessive. It isn’t the physical journey but that of the mind, psyche, etc. As I have written, the toll that all this has taken is very significant. Yes, my oncologist can say, “You look great!”
But he doesn’t see the damage on the inside. Of course, his objective is to treat the patient, so externally, I look “great.” I don’t know where I am going with this. I do that this illness, and the longevity of it, MUST have something to do with it / with life. I have to think like this; otherwise, what’s the point? If all my struggling physically and psychologically was all for naught … I can’t go that route in thinking… I spiral out of control…

Chris
Naturally, everything we go through leads us to be who we are at any moment. So you are, and will be, a very different person than you would have been had you not gotten cancer. But that doesn’t mean (in my mind) that it is directly related to your purpose in life.

Medical Alert ID

One of my biggest fears now, and since my diagnosis, is having a seizure. Obviously, I don’t want to have one anywhere/anytime, but my fear is that of having a seizure in public.
The vulnerability I feel when in the post-seizure state (“postictal”) is horrific. I don’t know where I am, who I am, who the people are around me, etc. Once, after a particularly intense seizure, both my mother and sister were sitting on my bed. Luckily, I was in bed at the time, so I didn’t hurt myself after losing consciousness. I frightened my sister so much and undoubtedly saddened her as well because, for the longest time, I just stared at her, unable to recall who she was.
A lot of the trauma I am currently working through with the help of my psychologist is the initial seizure. Currently, I can feel a seizure coming on. There are indications I’ve learned to recognize, often referred to as auras; these help me to take precautions so as not to fall and injure myself. In Chicago, when the first seizure occurred, I had no idea what was happening. I simply hit the deck. When I awoke, I could feel a rocking sensation and the hum and vibration of what I had come to understand as an engine. This knowledge didn’t help, as I had no sense of identity.
The paramedics had rummaged through my belongings and found my ID. This helped them understand who I was, but when they said “Mr. Ray,” I was unsure who or what they were referring to. “Mr. Ray, have you been doing drugs?” They asked this question repeatedly. I struggled, as I often do when regaining consciousness, and since they had no idea if I was, in fact, on drugs, they had me strapped down to the ambulance stretcher. Later, when in the ER, I discovered the cuts on my wrists from having struggled so much while in transport to the hospital. Again, they asked, “Mr. Ray, have you been doing drugs today?” I began to cry. “Mr. Ray, do you know what year it is?” I mumbled something, but I was unsure of what year it was. When I began to come around and gain a greater sense of who I was and where I was, I told them I was a graduate student studying in Chicago. I am sure the latter was evident in Chicago, but this helped them understand more. Finally, one of the paramedics said, “Ok, Mr. Ray, we’re going to untie your arms, ok?” Sometime later, well after I was in The ER, one of the paramedics came to see me. I didn’t recognize him, obviously. “Hi. Mr. Ray,” he said. I am sure he had found out, after inquiring about my toxicology report, that the only drug in my system was caffeine.
I currently wear a medical ID. This simply states that I suffer from grand mal seizures. This isn’t enough for me; I want it obvious that my medical condition is such that I was a cancer patient, and one of the ongoing ailments, perhaps an ailment for the remainder of my life, is seizures.
… I purchased the credit card-sized ID badge and a lanyard. As I gain more emotional and psychological confidence and the much-needed physical stamina, I hope to continue my walking routine, an oft-daily event that I greatly miss, which helps me process much of the events that have occurred over the past few years. I want the ID to be so evident that, should I have a seizure when out and about, my medical condition will be event, glaringly so. I have faith in my fellow man/womxn that, in such an event, I will be comforted and cared for until I regain a sense of who I am…
The thought of waking without knowing who I am, or even what I am, haunts me. The fear of being strapped down during this postictal time is even more so. The vulnerability, as mentioned, is so great that this prevents me from my outings — any outings, be they a trip to a cafe, to take in a movie, etc. I don’t want this fear to become so great that I avoid leaving the house. Currently, I can see this is where my fear and the ever-growing feeling of vulnerability are leading me.
The aluminum, bright red ID card, which I’ll wear around my neck on the outside of my clothing, will hopefully let me inch out more and more and break this paralyzing fear encroaching upon my life.

“Living one day at a time…”

I have had quite a few appointments in the last couple of weeks. I met with my oncologist, and we spoke about the recent MRI. The swelling of the initial lesion in my brain is still stable! As with before, stability is good — excellent! We’ve scheduled another MRI for two months out (mid/late February). With this continued stability, it is unlikely to swell, or continue to swell, more. Though, I am not entirely sure.

I also had a meeting with my neurologist. This was more revealing than the MRI results. As you recall, I wore the ambulatory EEG for 72 hours. All the diodes on my head were connected to a small box I wore around my waist. If any “strange” sensations or feelings arose, I was to press a tiny button on the side of the box. On the EEG reading, this will simply make a note of a specific time, and then, when the neurologist goes over the entire reading, they can go directly to these points and “see” what sort of brain activity was occurring at these specific times.

I pressed the button a total of 33 times over 72 hours. If, for example, I felt slightly dizzy or even disoriented, I pressed the button. I often have these moments when the world seems very distant, or I seem removed from the world. This is very, very difficult to explain. I have tried to articulate it several times. I have taken a step back and am watching the world — an “out of body” experience. This sensation has been so unnerving in the past that I have gone to the emergency room several times.

I was curious how these moments (the “out of body” sensations) would appear on the EEG reading. I was sure that these were some sort of petit mal seizure activity. According to the epilepsy foundation, petit mal seizures, an older term for “absence seizure”, are a type of seizure that causes a sort of lapse in awareness. “Absence seizures usually affect only a person’s awareness of what is happening at that time, with immediate recovery… The person suddenly stops all activity. It may look like he or she is staring off into space or just has a blank look.” This, more or less, sums up the feelings and sensations wherein I am removed from the world, that “out of body” sensation. When I wore the ambulatory EEG (72 hours), I experienced several of these occurrences.

However, nothing on the EEG reading indicated any abnormal brain activity. For 72 hours, everything appeared as it should. Granted, over these 72 hours, there was no reduction of anticonvulsant medication or any other means that, during an inpatient stay for monitoring, a seizure would be provoked. Nonetheless, during these times of “unnerving” sensations (again, the “out of body” experience), nothing out of the ordinary appeared.

This came as a total shock to me. I explained these strange feelings to my neurologist, as I have done in the past, but he again confirmed the results of the ambulatory EEG reading — a reading reviewed by several doctors.

This being the case, he wants to hold off on the inpatient stay for monitoring. “Let’s leave ‘well enough alone,’ Jeremiah.” Again, I pressed him, trying to find answers. I wanted him to pinpoint the reason behind these sensations and explain what was going on within me in plain and simple terms. “… anxiety, most likely, stress, PTSD… a sort of ‘depersonalization'”. This is also the theory of depersonalization that my psychologist holds.

These terms seem so vague. I was expecting to go to my appointment and hear that reading was indicative of these factors; an inpatient stay for monitoring was next in line, and then, after confirmation of particular, definitive activity, brain surgery would follow. My oncologist assured me I didn’t want brain surgery, as does my neurologist. In fact, my neurologist stated rather bluntly that I was to “leave the brain alone!” I insisted that brain surgery wasn’t frightening or an issue as I’ve already had it once. Due to my lack of any formal medical training, my pleas went unheard.
I understand why. Of course, who wants to tamper with the brain — especially this left frontal lobe area where the former lesion is located? When a neurologist and neurosurgeon insist that surgery isn’t an option or an option they are very reluctant to consider, who am I to offer an argument?

It isn’t so much that I want to be seizure-free, though that would be ideal; it is that I want answers. I want to know why; why this and why that. The seizures are just one thing I can fixate on when the larger question is, “Why did any of this happen in the first place?” I want to know why! Why can’t one of these doctors give me a solid answer with all their (western) medical knowledge and years of experience?

I am learning acceptance. I have come a long way in letting go and embracing the unknown over these years. On certain days, today, for example, I can sit with tea in hand and watch the sun slowly migrate across the wall, and there is this peace here.

American theologian Reinhold Niebuhr wrote a sermon concerning this. Though it is best known for its initial/opening lines, it is the second part that, upon rereading it, really strikes a chord with me.

“Living one day at a time,
Enjoying one moment at a time,
Accepting hardship as a pathway to peace…”

I am desperately seeking reasons for this hardship. In doing so, I fear this endless pursuit will overshadow life’s most straightforward, profound, and poetic aspects.

Today, as mentioned, with tea in hand and watching the sun gain its strength each day, I am okay with it — with everything.

Epilepsy monitoring

After weeks, perhaps months, of trying to decide whether or not to undergo the epilepsy monitoring, I elected to take the needed steps and proceed. Even after registering and meeting the doctor and team of techs I was still ready. Then, however, something shifted and I didn’t feel prepared (emotionally/psychologically) anymore — I even started to wonder if I ever was. Perhaps it was the hospital setting and the rising anxiety that these institutions produce. Or the clinical smell that permeates my unconscious mind, leaving me with a sick feeling in my gut. Or the veggie burger I ate that tasted exactly like the one I would consume at Mass General. Maybe it was the person in the next room who was moaning and crying while amid a seizure and/or experiencing post-seizure horror that caused a terrifying delirium, which is inexplicable. Maybe it was a combination of all these elements, but I decided to postpone the study… in fact, I was almost desperate to leave the hospital as fast as possible.

The process post-study didn’t sound as easy as I hoped. Afterward, Post data collection, I would undergo several neurological tests, i.e., language, cognitive function, etc., to ensure the safety of potential surgical resection. Then, a team of neurologists and neurosurgeons would get together and review ALL the information and decide if I was even a candidate for surgical intervention. This testing/deliberation could take 4-6 months. Though I knew it wouldn’t be so cut-and-dry (no pun intended), I certainly didn’t think it would take that long.

For the time being, I decided to take baby steps. I left the hospital with what’s called an ambulatory EEG. This allowed me to return home to continue resting and healing — both of which are desperately needed after years of treatment and the emotional, psychological, and physical stress this entire ordeal caused. Before leaving the hospital, a dozen diodes were glued to my scalp. These are then connected to a small box that gathers information 24/7. I was also given a camcorder meant to be left on while I’m sleeping, sitting reading, writing, playing guitar, cooking in the kitchen, etc. — basically any place I might be for several minutes. The intention is to capture any possible seizure-like activity via brain waves and on film.
Perhaps this monitoring will shed some light on certain elements and reveal potential seizure activity.

Baby steps. Slow and steady…

I’m trying to race through all these tests, not just those related to the seizures, but every single test (blood labs, CT scans, MRIs, etc.), desperately hoping to return… but to where I know not. There is some kernel of normalcy out there — there must be, right? Although I am trying to find it in the past, I know, beyond a shadow of a doubt, that this normalcy I seek, this peace of mind and, dare I say, acceptance, is found right here and now.

I just haven’t gotten there; I haven’t arrived. Acceptance of what is, that ability to live (more) presently, is just beyond my grasp. I know I could easily take hold it, maybe lean just a little farther out, bravely extending, trusting myself in doing so, but I’m held back. The bitterness and anger pull me the other way, back into the known. I am seeking normalcy in this place, in the past, but all that remains some visions and daydreams lead to the bitterness and anger felt presently. I often wonder, when in a moment of clarity, how much I polish those memories to better serve my current state of anger, sadness, etc. This is where the emotional and psychological exhaustion, or at least the majority, stems from; the continuous construction of a palatial past to which a return is impossible.

A Return

black and white photo of the woods in the winter

I ventured to the woods the other day. These were the woods wherein my seizure occurred last March.

My mother waited in the car. I had to go alone. I needed the time to be there, process, and allow whatever might arrive.

The season had changed since my last visit. The snowmelt was no longer pooling here and there along the trail, and neither was the chilly bite in the air that remained for some time, even after spring’s arrival. The summer passed without a visit, and I was too frightened to be in the woods — particularly these woods. I was worried a panic attack might trigger a seizure.

When last there, the trees held tiny buds awaiting the perfect, though often invisible, moment to arrive. They had blossomed and were beginning to turn, on the verge of exploding with such vibrant colors as they do so beautifully here in autumn months in New England. Had it indeed been so many months since I was here?

I felt annoyed that the seasons had passed so quickly, but more so that fear had prevented me from returning here — to MY woods. The day was overcast, and I thought it might rain. I was alone with just my thoughts and memories.

After maybe a ½ mile, I rounded the bend in the path and came upon the place where my seizure occurred. Before this, when I walked in, I tried to stroll and be calm, though I could tell my heart rate was increasing steadily; a thin layer of sweat sprouted on my forehead even on this relatively cool day. I nearly turned around and headed back to the car, to the safety it represented, to my mother, and to the security she conveyed.

Ever-present change is more evident in the woods than most anywhere. This may be why I love the woods; perhaps this is why I am in love with the woods. In March, when I last visited them, they exposed themselves openly. The barely present buds left them almost entirely bare, letting the eyes easily pass through the thickets, thin conifers hoping to grow as tall as their brethren, and a few deciduous trees here and there that seemed out of place. Then, in March, just off the footpath, the untrodden snow still lingered, allowing the shadows of the trees to fall upon the ground, shifting with the daylight. These skeletal structures made them appear even more vulnerable. Soon, they will again return to this place of nakedness, letting their leaves blush and climax in such a way I oft wonder if one is worthy enough to witness it. The autumn rains, winds, or the process of the seasons will again reveal the depths into which one can peer… if one is so inclined.

I have not let the woods teach me anything. Instead, I let them teach me everything and then discarded this knowledge. I’m too damn stubborn to accept the reality and pure honesty of it; Nothing. Remains. Constant. Everything. Changes.

It took me several months to return to the woods, to MY woods. I almost forgot their ability to adjust so quickly to change and what message this might hold for me should I be a willing pupil ready to accept the wisdom I desperately seek. I held onto everything cancer had taken away from me; I roped in everything I could think of, from my first seizure in Chicago to the most recent setback, and said, “This is why I can’t return to you!” The woods seemed like the most logical entity I could blame; after all, who else could I point the finger at?

The woods graciously accepted my anger and sadness, my bitterness and tears. They held no hard feelings. When I walked into them and found the location of my seizure, a soft breeze moved through the branches, showing signs of the fast-approaching season. The gentle wind amongst the trees spoke softly, never demanding to know where I had been. Instead, as the wind tossed the branches, they said, “Welcome back, we’ve been waiting for you.”

I lit some sage, pulled the tendrils inward to my being, and then pushed them away to the woods, trying to cleanse something inside me.

PTSD

A few days ago, I decided to check my temperature. I was sniffling, probably due to seasonal allergies, but I was also concerned I might have a cold after taking my temperature, which rested nicely at around 98.6F. I took out an alcohol swab to wipe the end of the thermometer.

Immediately after removing the single-use swab from the packet, the pungent aroma wafted. Shaking almost uncontrollably, I made my way unsteadily to the foot of my bed. There, I continued to tremble, a jittery sensation as though I had consumed too much caffeine. My body warmed, almost a flushing feeling. My knee-jerk reaction in such a situation is to reach for an Ativan.

I was worried I might be too unsteady on my feet, so I chose to remain seated. My reaction, which I now understand to be a “trigger,” was activated by the smell of the alcohol swab. I felt nauseated while sitting on the edge of the bed, but I tried to calm myself by focusing on my breathing and posture. I’ve been practicing this mindfulness technique with the help of my therapist in such situations. Although I have Ativan as a backup, I don’t want to rely on it constantly. I managed to breathe through the intense anxiety, and slowly, it began to dissipate. However, it was followed by extreme fatigue, as usual.

While at Mass General, I had my temp taken regularly, every time vitals were taken. After this, the nurse on duty would wipe the thermometer. It was sterile, just like everything else in my isolated room. So great was the need for precaution that for both my transplants, I saw only the eyes of the nurses, doctors, and visitors as surgical masks shielded their faces. It is tangential, but it does illustrate the necessity for sterility and the regular use of alcohol swabs and other such disposable cleaners.
I have had numerous experiences such as this: legs shaking while at a clinic, nausea during routine blood work, and extreme panic while in an MRI machine. The list goes on and on and on…

I have strayed away from the term “Post Traumatic Stress Disorder,” though I am not sure why. In many ways, I thought it was reserved for people who had experienced events that were far more traumatizing. I also didn’t want to label it, especially that one. I didn’t want to see myself as traumatized. I didn’t want to be in that place. When I was first diagnosed, I hoped to go to the clinic for a few months of treatment and then return to my everyday life. Admitting that I was traumatized would mean needing more treatment, not physical therapy, but rather addressing the ongoing effects of cancer once the initial battle was over.

My psychologist and I have spent numerous hours both addressing aspects of trauma, how it looks and feels, etc., and also skirting the subject altogether. We’ve danced around it, so to speak, but also avoided entirely that which has been glaring at me, lurking, waiting for me to address it and growing larger each day I didn’t.

I thought of trauma as something that held someone back, something that was fixed in a specific time/place. I thought it was an event that never released its talons, rendering someone helpless & forever there, reliving the past events. I didn’t want that. I am embarrassed to admit I thought I was too strong. The idea above, that of strolling into the clinic and strolling back out after a few months, was how I saw myself. After the completion of my second stem cell transplant, and I was a few days away from being discharged, my oncologist said, “Well, you’ve really trooped through these!” That was me, the warrior. I only let my guard down in front of a few select nurses. I held my tears back until I was in the bathroom, supposedly showering; I’d turn on the water and then sit there crying. At night, I would slip into weird, psychedelic dreams, from which I would wake up moaning, curled into a fetal position, clutching my stuffed animal with such force my fingers would ache the next day.

This is fear. This is pain. This is trauma.

I see the label of PTSD as synonymous with being stuck somewhere in the past, reliving it over and over. The truth is, I have barely, if at all, even begun to let myself do that. To relive and work through an event(s) of significant trauma, pain, sadness & anger is, in fact, stronger. When an alcohol swab sends someone into a tailspin, into a place of panic because of the memory it holds, it is evident that something needs to be addressed, something needs to be unpacked.

I have been told that life post-cancer treatment is the most difficult; it is when the real work begins. It is when things rise to the surface and demand to be addressed. If not, they will have their talons firmly fixed into their prey, and one will be held there forever, somewhere in the past.

I’m not going to die…

I’m not going to die, at least not yet.

When my oncologist said, “There is some swelling around the former tumor in your head. This might be the tumor waking up, but we’re not sure right now.”He then mumbled something else, which now escapes my memory, as things do when you’re told such news. Then I mumbled something in response, neither of us wanting to address reality, just mumbling a language that we both agreed upon but neither spoke fluently.

I had several days to mull this over in my mind. It was the longest several days of my life. I played out every possible scenario, walked them all to the end of my imagination, and then started with a new possibility and led that one down the same road. A tumor that had potentially “woken up” and presented with edema (swelling) around it.

Sure, here is the revised text:

I found myself constantly thinking about death. Despite being told that my body could handle more chemotherapy, I questioned whether I really wanted it. After undergoing extensive chemotherapy, did I want to endure more? In addition, I was still dealing with numerous chemotherapy-related issues such as neuropathy, tinnitus, dizzy spells, extreme fatigue, memory problems, slight speech impairment, nightmares, anxiety, and depression. Could I really handle more? Moreover, would additional chemotherapy be effective? Would it only prolong my life without actually curing this disease?

The day before my MRI, I sat on our porch, basking in the beauty of the world around me. The gentle buzz of bees filled the air as they industriously collected pollen from the vibrant flowers. Watching their instinctual knowledge of which blooms were nearing their end was fascinating. I was struck with the realization that we are on a ceaseless quest to evade the inescapable fate of mortality – even more so, the recognition of it.

I truly and honestly looked at death in that glorious sunshine on the porch amidst the bees and butterflies. It wasn’t some philosophical idea, some existentialist pondering, but a cold-hearted fact of what I thought was fast approaching. For the first time since the beginning of all this, since my seizure in Chicago to the most recent comment made by my oncologist about a tumor possibly waking up, I felt okay about it. I felt Okay about the possibility of dying. More importantly, I felt at peace with it.

Even now, writing the words is hard to fully express. Words fall so incredibly short. It is not that I was resigned or apathetic. It wasn’t that death was a welcomed reprieve from the madness of my life that, when it finally arrived, I would ask, “What the fuck took you so long?” It’s that death, the possibility of dying, the likelihood that it would arrive soon, graced me with a profound inner peace, one that I have never before felt in my life.

I didn’t want to move. I didn’t dare shift my gaze out of fear that this would disrupt the sensation and overall feeling I was currently blessed with.

“Hi Jeremiah, this is Dr. _; it looks like the swelling is due to necrosis, a cellular death that can occur after radiation. We’ll just keep track of it; I’ll schedule you for an 8-week follow-up. I don’t think surgical resection is needed, but I’ll put you in touch with a neurosurgeon, and they can go over that with you.

… and that’s it, necrotic tissue causing swelling.

There is a lot of work to be done now. One year post stem cell transplant allows for little breathing room, but that’s plenty for me — that’s more than enough. The real struggle now is with my mind and heart; the PTSD, anxiety, etc., will just take time and patience and love — self-love especially. The level of peace, however, and the acceptance I felt on that day, and still feel now, will go a long, long way in my emotional & psychological recovery. In using the metaphor of one of my latest posts regarding my feeling of helplessness & exhaustion being like the crashing waves under which I’m struggling to stay afloat, I can touch the sea floor now. Also, the land is clearly visible, and the tide finally works in my favor.