The weight carried,
the what-ifs upon bent backs –
(in) worry and (in) wondering,
“now? if not now, when?”
survivors hold this question;
they live in the moment
of continued burden.
how do I share the weight of gathered
memories?
how do I convey these worries?
I add them singly,
one by one,
layering them,
and bend my back to their weight,
asking,
“if not now, when?”
My first anti-convulsant med helped keep me seizure-free for over a year. As the seizures started, it was slowly increased in dosage to no avail. My neurologist changed that medication out for another, which has seemingly stopped working, too. Each medication has reduced the frequency of my seizures; however, I have experienced two severe episodes in the last few months. Each time, I tumbled pretty hard. The second time, I fell several steps and eventually went to the ER, wondering if I had a cracked rib. Thankfully, neither incident caused much harm. The wound, however, is more emotional and psychological. Yes, my entire torso might have been covered in bruises, but the real damage is in my psychological state. I want to move forward, and it seems the only real thing preventing doing just that is the seizure activity. I can manage the anxiety, kind of. The fatigue requires a good midday nap. The seizures are detrimental. My neurologist suggested that I enter an epilepsy monitoring unit (EMU) to understand the brain activity further and see if we might find a way to manage the seizures. He had mentioned this in the past, too. Initially, the thought of being inpatient (yet again!) in a neuroscience ward where I would not only be monitored 24/7 by a team of doctors and techs trying to induce seizures sounded horrific and barbaric. However, with the increase in activity, it seems the best option is to undergo monitoring to comprehend the root cause of the brain activity. Perhaps this will entail surgery or some other form of intervention. Right now, that is very much a mystery. The only thing that is understood is that this is hurting my emotional healing and recovery.
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.
Waiting for an MRI or CT scan results is no fun whatsoever. Honestly, there is something about bloodwork that feels worse, more challenging, more painful. Perhaps because of the speed at which labs are drawn and the agonizing waiting period. An MRI, as well as a CT scan, require some form of preparation. Blood labs are quick: in / out / get out. I can’t speak for other facilities/clinics, etc., but there is a lengthy waiting period for results. I say “lengthy” because when you’re pacing around like a nervous wreck waiting on results, even if just for a few days, every second feels like an eternity. I had my labs drawn on Friday, February 1, 2019. So, considering the time delay with the weekend, I might not hear until mid-next week.
When I was first diagnosed, I was asymptomatic. As I have mentioned in numerous updates and blog posts, my only symptom was what I thought was a chest cold (cough, slight wheeze, etc.). When the recurrence was noted, I had absolutely no symptoms – none! At the time, I was shoveling snow off my roof, stacking wood, and going on lengthy treks in my beloved woods. There wasn’t a single indicator that something was even remotely amiss.
I don’t trust my own body. It is a sad thing to admit, but I don’t. I wrote a poem about this shortly after diagnosis, in which I kept repeating the line, “body, tell me things!” I was pleading with my being, physical or otherwise, to give me a sign, speak up, and present to me in waking life or dreams that something wasn’t right.
I know my body will eventually heal. “You are powerful, Jeremiah,” my oncologist recently told me. Without wishing to sound pompous, I know this – I already knew this.
In this manner, trusting my body to heal, I know it will always recover. Even after multiple, multiple rounds of cell-killing chemotherapy, a drenching so great I am surprised I survived my two stem cell transplants after the chemical bath I received during my initial treatments, my body bounced back. But somewhere, somehow, it doesn’t communicate what I need to know beforehand, which is most important.
Body, tell me things!
Germ cell tumors, i.e., ovarian and testicular cancer, are hard to detect. Thus, they have often been called the “silent killers”. 19% of ovarian cancer cases aren’t detected in the early stages of development. Testicular cancer, being in the same family, is very similar. A “chest cold” is the symptom of metastatic lesions throughout my lungs; a seizure was my body finally communicating with me that the cancer had reached the end of the line.
Body, tell me things!
I want to trust my body. I want to know what is going on and developing within me. I am paranoid now. One day, I will exercise, usually in the form of cathartic dance/movement, and the following day my thighs hurt. Naturally, this makes sense; I had been dancing ecstatically 24 hours before. My mind, however, is wondering what else might be there or lurking below the surface.
Body, tell me things!
Sitting here waiting for results, I am in that place of treading water again. My MRI is scheduled for February 5, requiring a long wait. I don’t feel this is a life — no, I know it isn’t. Scans are three months apart. So, for 1.5 months, I have been delighted, I have been resting, I have been gaining strength, etc. The next 1.5 months are a time of wondering… questioning… fearing… dreading, sleepless nights, and days walking around trying to retain what’s left of my sanity.
Body, tell me things!
I want to slip back into that blissful state of nativity. The days, the years, all 33, when a chest cold was just that, when sore thighs resulted from exercise. The years in which I didn’t wake up in the middle of the night and dread the darkness because of all the unknowns it might hold.
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.
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.
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.
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.
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 can’t help but look back. It is torture, I know… but I’m still trying to figure things out. If I keep repeatedly playing things in my mind, something will pop up, make sense, and be clear.
This photo (4/4/16) is after being discharged from the hospital. I had my orchiectomy, was diagnosed, had my apartment packed up, and was about to return home to New England for treatment. How did I manage all this? I didn’t notice until looking at the photo that I was still wearing the bracelet from the hospital.
Things change so quickly.
My eyes are so tired in this photo. I looked worn out and worried – naturally, I was. I wanted to smile for my girlfriend, it was her birthday. Considering life’s drastic change, I wanted to act as normal as possible.
I am not sure why I return to these images. Maybe it is the stark contrast between the two; a casual day at the nature museum was only a matter of days before my life fell apart.
What am I seeking here? What do I hope to find in the words written upon my face, within my tired eyes?
I notice my left hand is gripping her shoulder so tightly. Is it because I’m leaving? Is it to thank you for being there for me, coming to the emergency room, and staying with me there for days? Is it that I’m trying to hold on with all my strength because this is the last refuge, the last fragment of normalcy that I will have in a long time?
I will turn these questions (and many more) over and over in my mind. There has to be reason within them… they have to make sense.
healing is a circular path 