My 1st MRI

My first brain MRI was in Chicago after being rushed to the ER. I woke from a seizure stuck inside a device that hummed and rattled with a disembodied voice telling me not to move. As I recall, it wasn’t a pleasant voice. However, in defense of the tech overseeing the procedure, I struggled to free myself. In my defense, however, who the fuck wouldn’t? I was reentering the world from a seizure; I didn’t know who I was or where or, for that matter, what I was. I was there, semi-conscious, with my head stuck inside an unknown object that seemed to be pulsating. “Jeremiah, don’t move! If you do, we’ll have to start the procedure again!” So, I stopped moving; instead, I just cried.

What I remember, even more than the terrifying sounds, the somewhat annoyed tech, and the tears, was my thirst. My god, the craving for water was so intense. My tongue was leather-like in my mouth. When thirst surpasses fear, a new level of a primordial being emerges. That is the creature that remained on that MRI/scan bed, the being who rested motionless and withdrew inward. I do not know any other word to describe the sensation better, but “withdraw” is most suitable. It was as though Jeremiah split into two halves, the person being tested/scanned and the one full of desperation. In between these was where I ended up and withdrew, holing up in a chasm. I remember resting my hands by my side as if I were a windup toy that had just ended its cycle. I’ve always wondered what the MRI tech thought. Did they see me slip into that place, that point between two worlds, the chasm I mentioned?

The “scanxiety” is everpresent; how could it not be? However, I understand that my genuine fear is detaching. I am concerned about stopping as I did before within that gap between the two halves amidst those two worlds. The horror of a potential recurrence is no longer as intense as it was, even with the tumor markers that are trending upwards ever-so-slightly. If it ever does return, I’ll deal with it. I dealt with it when initially diagnosed and again with the recurrence. After numerous hypnosis sessions, it is evident that my worry of withdrawing, psychologically and emotionally disengaging, far surpasses my concern of a recurrence.

As I have discovered, and most already know, cancer can be managed and treated in numerous ways. The withdrawing, the derealization I speak of, isn’t controlled or cured in such a targeted manner. I feel more detached with each MRI. Amid each procedure, the tech, be it for an MRI, CT, etc., needn’t tell me to “stop moving!” as I keep finding my way back to that middle ground, to the chasm.

In dreams

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

Patience (the ancient tree)

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.

i cannot tell

which is more patient

the tree

like gnarled old fingers

sun-beached and

long since passed

or the days and nights

which move around it

we witness the blue sky

so rich and clear

and mistake our need

we forget tolerance

we say

“get out of the way

you old tree

I want to see the blue sky”

but the tree

is the gentle one

by day

it marks the earth

with the movement

of the sun

across the sky

not rushing it

letting it be

moment by moment

and at night

it stands

almost sentry-like

keeping watch

waiting

it never says

“you are gray today

bring back

your blue sky”

if it is unable

to mark the earth

as a sundial would

it just waits

gnarled and old

like it was yesterday

as it will be tomorrow

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.

National Cancer Survivor Day

Today is National Cancer Survivor Day.

I have been compiling some comparison photos. The ones of me during treatment, which were taken during my inpatient stay at Mass General, were so hard to look at for the longest time. It is still unnerving. When I upload and then delete photos from my phone these photos, as well as a few of my family, are the ones that always remain.

In the last several months, I have only been able to pause, look at them, and consider who that person was and what aspects of him still remain. The shift in this ability, that of being able to witness this previous Jeremiah, came after my psychological and emotional hardship experienced while abroad in the fall ‘19. Since then, things have started to dissolve, things that have been carried and dragged too far for too long. Perhaps this is why I can look at this photo with more compassion and kindness. Yes, there is still fear, of course there will always be fear.

During these years of survivorship, some people have drifted out of my life, as any path to any destination worth arriving at isn’t free of bramble and vexation. Others have grown increasingly closer to me, and in sticking with the path analogy, our comradery has strengthened, allowing us to work together through the dense underbrush that is life.

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.

The middle-ground

Cancer is a sort of middle-ground between what was and will eventually be. This middle ground is unstable and forever shifting and changing — often daily. As unstable as it is, it also acts as an anchor. With a diagnosis and subsequent treatment, with life revolving around clinics and tests, trying to grapple with the “new normal” post-cancer, as well as the shift in perspective of life when the dust settles, patients seek refuge on this ground.

This middle ground, however, cannot hold, nor is it meant to.

To acknowledge that one is in remission is to become aware that the steps, however frightening, must be taken to move away from the middle ground to step forward. I have kept myself there in this gray area.

I can stay here forever. There is safety here. I’ll live here. I’ll build a life here.

This middle ground, however, cannot hold, nor is it meant to.

As horrifying as they were the circumstances in France rattled parts of me, they forced me to bear witness to the events that had taken place over the years. I was unprepared to handle the deluge of emotions from observing this. The events snapped me into such intense awareness of all that had come to pass, each and every brutal moment of my journey. The emotional scars became apparent. The physical scars radiated, and I could not look away from either or turn my attention elsewhere. My emotional being couldn’t hold out any longer; I was shedding layers, and the feeling of emotional nudity was unbearable. I was losing the self I had been constructing; who was Jeremiah now? This identity was slipping, try as I might I couldn’t hold it. Everything came to a grinding halt; I was literally and figuratively unable to take another step. Brain surgery had to occur during active treatment; there was no question about the procedure. When everything started to rise to the surface, when the layers were dropping away, the physical and psychological acknowledgment of this particular scar was the trigger that sent me into a tailspin.

I have been able to meditate on some of the imagery and hallucinations I experienced during my breakdown. There are some images that, until now, have remained mysterious or so tangled in metaphor that I couldn’t decipher them. One in particular was pulling a hair-like substance from my chest. This unnerved me, and I wasn’t ready to interpret it. I had been building an identity around cancer; it engulfed my entire life for so long that I took on that persona, that of a patient. ‘I have cancer’, I’d say to myself, or I speak about it as though it was current, that I still had it, that I was still in the place of treatment. Neither is true. This gesture of pulling this substance from my chest is so clear to me now, so obvious. I was trying to extract this identity, this version of myself that has since passed. The transient persona that I had outgrown yet was fiercely holding onto. From within me, from my core, I was trying to haul this out, to unburden myself of it. Not to rid myself of the memories, good or bad, nor the lessons learned, as there are numerous — a lifetime’s worth! I was trying to purge myself of all that didn’t serve me, holding me back from stepping off the crumbling middle ground.

I had to return to France; Golinhac was calling me. All this came about there; all that dormant within me rose fully to my attention — glaringly so! In return, I would leave the remanence of this deteriorating middle ground and my meticulously crafted persona. I’d keep the new awareness and lessons from the incidences experienced there and feel a sense of certainty in stepping away.

I put a ticket on my charge card and began packing. Just a few weeks after I left France, a complete emotional and psychological mess, I was going back.

Everyone expressed their concerns. They were worried that I was still very vulnerable and returning so soon, in a fragile emotional and psychological state, would be very unwise. Why, after such a short period of time, would I want to return to the site of my breakdown? To the place where, just a few weeks ago, I was admitted to the emergency room after being found screaming and howling in the middle of a footpath just outside of Golinhac. These questions started building in my mind, too. Why would I want to do this? The entire way to Boston, which on the bus felt like an eternity, I was wondering what on earth I was doing. What was I hoping for? I didn’t know the answer to anything. Even during my layover in Lisbon, I still wondered and questioned everything.

I admitted to a dear friend who has been an incredible support this entire time and someone I feel safe confiding in,

“I don’t know what I’m searching for.”

“I don’t either,” she replied.

This is the uncertainty that keeps a cancer survivor remaining in the middle ground. Not only the uncertainty of life, as explained, but that of oneself, the question of who one is — who is this Jeremiah? How has he arrived here?

I don’t need an identity here. I can stay here forever. There is safety here. I’ll live here. I’ll build a life here.

This middle ground, however, cannot hold, nor is it meant to.

I walked east out of Golinhac with ever-increasing anxiety. I had to stop and gather myself to go on a few times. At one point, I even considered returning home, admitting it was too soon for such an undertaking. But I was still drawn onward and slowed considerably, taking deep, slow breaths with each step. I stopped at a certain point, put down my pack, and started emulating the gesture of pulling the hair substance from my chest. Gently, slowly, without the frantic haste of my hallucination, I mimicked the action, one hand then the other in a rhythmic fashion as though softly pulling one long, continuous thread from my chest. The action became ritualized in its repetition, fluidity, and symbolism, bringing a deep sense of peace. I envisioned dismantling the persona that had been constructed around cancer, the identity that no longer served me. Bit by bit, as if pulling a single thread that unweaves a tapestry, I unraveled an identity. I simultaneously entwined a new Jeremiah, no longer the patient, yet holding the memories and lessons – the same thread yet a different weave pattern.

I stood still in the silence of the location and continued taking long, slow breaths. Dusk arrived, and with it, a chill. I retrieved my pack and walked westward back towards Golinhac.

The peace I felt there has remained. Returning to France, which consisted only of four full days, left me feeling as though I had undergone years of psychotherapy. It isn’t so much that I am thankful for the breakdown itself, as it was terrifying, rather, that I am thankful for that which it revealed to me and the metamorphic shifts that have since followed.

This is not to say that I have stepped entirely from the teetering middle ground, but I have one foot firmly planted on the other side.

I can build an identity here, one that is linked to (the) cancer via memories and life lessons and not one that is torn between two worlds, two worlds that ultimately hinder the desperately needed stability required for reconstruction.

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.

The “new normal”

After drinking one liter of contrast dye and being poked numerous times to place an IV, my chest/abdomen/thorax show stability! No new developments – things are as they were and have been – stable!

Now, the task is sorting out these seizures. My anticonvulsant med has been increased, so we’re hoping this holds. However, if it doesn’t, the next step would be inpatient epilepsy monitoring. Several months ago, this was the initial idea; however, my neurologist didn’t want to jump into that. As he said, “Let’s leave well enough alone.” At the time, it had been a few months since my last seizure, and the hope was that the medication was holding. After my recent seizure, however, it was decided that, should another episode occur, I would enter the EMU (epilepsy monitoring unit) at Maine Medical Neuroscience Institute to get a very clear idea of the seizure activity.

Part of me wants to enter the unit right now to really understand the root cause of these debilitating seizures. The flip side is that I am exhausted, and the thought of being impatient for any reason makes me angry and sick to my stomach.

I want to return to normal, and this bullshit idea of this being the “new normal” greatly annoys me! This mentality is far too easy to put forth from people who haven’t spent 3 years trying to stabilize themselves, right themselves, adapt, and readjust every moment of every day.

The positive news is that my lungs/thorax/etc. Are stable overjoys me… but I celebrate halfheartedly, always wondering what might be lurking, waiting for me to let my guard down. History has shown that with every up, with every moment of elation, is followed by a horrific down, a paralyzing fall. What is seen as pessimism, or something similar, is me trying to minimize the letdown, the fall from too great a height. Being in this constant state of emotional and psychological neutrality is a shame.

Perhaps that is my “new normal”.

“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.