Exist. Live.

Every year, on the 1st of April, I mention that this is the anniversary of my diagnosis. I talk about the irony of it, being that I was diagnosed on April Fool’s Day. (If you can’t see the incongruous nature of that situation, I’m not sure you’ll make it through life unscathed, my dear.) Today, however, I was thinking about other things, things beyond the absurdity of it all, which, to my pleasant surprise, brought about a giggle or two and not “what the fuck?” moments. You see, life is linear, in a roundabout way. Are you with me? I’ll try not to lose either of us, as I clarify.

We can wake up and go to bed and, in between, either exist or live. I was thinking about this as I stood on a small chunk of land poking out into the Bay of Biscay. Far out, somewhere, a storm was rolling and lurching – as they do. I arrived on foot, having walked from Santander. I knew a storm would come; storms always come; they’re linear – in a roundabout way. I didn’t consider the lightning storm. I was not expecting the hail nor the rapid drop in temperature after that. I thought that I had planned for things… We’re always looking, plotting, and considering ways to plan things. Yes, we’re always planning how to prepare. Things. Things. The linearity, the trajectory. Things. I wanted something to go accordingly. I wanted to exist, plan for hail, and prepare for post-graduate life. Things. Bring my gloves for the drop in temperature, and consider how to outline my resume to make a potential employer go, “He’s our guy!”

Existing. It’s existing.

To exist –

verb (used without object)

to have actual being; be:

The world exists, whether you like it or not.

This isn’t a survival story. Nope. I was freezing to death; I wasn’t lost in the depths of the wilderness. This is about sitting under a tree, stuffing my hands into my armpits to keep them warm while watching a storm pass over a gorgeous seascape. I was existing. I was waiting for linearity to run its course. Yep, I’m just sitting there and waiting it out. Linear. Point A – point B

Cancer and cancer survivorship is not linear. You can stuff your pack with all the shit you can think of, and something will come up, and what was once progression is kicked back to point A. It’s linearity in a roundabout way because it’s progression until it’s not. It’s growth until it’s not. It’s freedom until it’s not.

What truly breaks the cycle is opting to live and not simply exist, being and not endlessly planning to be, enjoying being rather than planning on it. I only realized this…today. However, I don’t know exactly. Sometime between waking up and knowing it was my diagnosis anniversary and accepting the fact that I was actually going to stuff my hands into my armpits because my gloves were sitting on the table at my Airbnb.

To live –

Verb (used without object), lived [livd], liv·ing.

To have life, as an organism; be alive; be capable of vital functions:

All things that live.

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.

There is sunlight on the wall

The wall does not demand that the sunlight stays

I had this thought today. I was gathering my things and packing up my belongings before setting out to do a bit of hiking.

I glanced up at the wall to check the time, and before I commenced packing, I noticed this beautiful ray of sunlight, elongated, stretching from one point to another, almost crossing the entire length of the wall.

Hastily, I resumed packing, letting the moment of awareness slip by, as is their nature.

After what I thought was just a few minutes, I glanced again at the clock. I was once again blissfully ensnared within the moment when I noticed that the thin strip of light had shifted entirely and was just a fraction of what it once was; not only had it diminished, but it was almost entirely gone.

Such is life; fast-moving with little blips of delicious awareness.

The gardens

I am not sure when I began gardening.

There is a photo of me as a young child sitting in a rhubarb patch, looking content. I like telling people I was born on a farm in Vermont. This, of course, is true. Born to parents who went “back to the land” a couple decades after the peace-&-love generation & decades before the trendy, neo-hippy movement of today. Displaced, so to speak; the idealized, flower-power mentality after its heyday had come and gone, and way too soon to sell “Vermont-made” handicrafts on Etsy. Sitting in a rhubarb patch as a child, I was in a little garden paradise, blissfully unaware of the lack of cultural stimulation, full-time employment, and the reality of being 16 miles from the nearest supermarket.

Gardening is a form of regression back to this innocent state, not entirely of course, as I am no longer a child in a rhubarb patch, but enough so that allows for certain worries and concerns to be gently washed away.

In the summer months between semesters, I would landscape. It wasn’t lucrative or as lucrative as I would have liked considering my upcoming needs as a full-time student, but I found myself repeatedly drawn to it. The long hours of labor, the sun and sweat, and the feeling of contentment after a day or a long week were completed. I needed this connection to labor and the earth in those summer months. It was a reprieve from the bullshit of academia, a world I was beginning to loathe. I worked with men who, as children, labored alongside their brothers and sisters, mothers and fathers, in the potato fields in Maine. I had worked with them for several summers. Each summer, I’d return, and they were there, seemingly untouched; country music playing in the shop, lunchtime at noon on the dot, and crass jokes when the situation presented itself. Whereas they saw the job as a means to an end, I saw it as a desperate need to return to the land, like my parents, and get my hands in the dirt regardless of how the future might unfold.

During the initial treatment I completed in July 2016, I was too ill to venture outside to do any gardening. The following summer I was at Mass General undergoing stem cell transplants which, after being discharged, left me with essentially no immunity as well as energy levels that constantly hung well below normal. 2018 allowed for light yard work. I would venture out and, as usual, due to my stubborn nature, would push myself too hard and end up exhausted to the point of tears. Nonetheless, it felt good! I have started early garden cleaning this season. Raking the leaves, spreading a little mulch, trimming back anything that was too lanky last season. These seemingly little pleasures make me happy. Yes, I have to wear the N95, the same type I needed to wear whenever I roamed the halls at Mass General. The sterile smell conjures up numerous memories and nauseates even to this day.

I have been contemplating the reasoning behind my love of gardens and the earth itself. This post (or update) has remained unfinished for some time as I wasn’t sure how to end it — rather, how to articulate the power gardening has over me. What I came to realize is that I can’t fully articulate it, I can’t express it in words as there are none. After my weeks of trying to find the great “why” we perpetually ask ourselves as humans, I do know that there is honesty in gardening, in the earth. A single garden bed has no masks to hide behind; it is more direct and honest than most humans ever will be. A return to the earth, to the garden(s), is the kindling of a relationship that, for me, surpasses the relationships I have/had with my own species. I feel safe within gardens and the earth itself. I can be joyful and happy or sad and mad; the garden, the earth, accepts this and is joyful with me or soothes my sadness.

I didn’t understand this connection for the longest time. In fact, as stated, it took serious contemplation to even recognize the reasoning behind my feelings for both gardens and the earth. Looking back, I can trace this feeling of comfort and safety throughout the years and through the many gardens I have worked in and spent time in. I wonder about that photo of me as a young boy sitting in a rhubarb patch. I don’t want to taint that memory with the ideas and philosophies I have now as an adult, but I can’t help wondering.

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”.

Instagram

Instagram: happyfroggie

This was originally posted on Instagram and is unfinished for a WordPress setting. As such, it will be updated.

Today marks my 1,000th (Instagram) post. For 1,000 days, save for a few days when I was too sick to post, I have posted an event in Froggie’s life. In early April of 2016, I was diagnosed with advanced (stage IIIc) cancer. Shortly after my treatment began, shortly after my entire life was brought to a screeching halt and then flipped upside down, a friend came to visit and brought with her Froggie. I immediately clung to Froggie; he became an extension of me. As my life spiraled into a nightmarish realm, Froggie kept me safe and sane. Post-treatment days, days spent in a hazy, sick, tear-filled & angry state, Froggie was a lifeline. I was living vicariously through him, through his life, his innocence, his oft strange and slightly dark humor.
Froggie arrived from Froglandia and was new to my world, just as I was new to the world of cancer & treatment. We met each other halfway, two tourists in very new and often frightening worlds. Froggie joined me to every treatment, every hospital visit, and every appointment with various specialists and medical professionals. He was there, always. He also accompanied me to my places of refuge, the local beaches and woods, where I would walk and let the horrors of my life slip away.
6 months after my initial treatment ended, my cancer returned. The treatment intensified, as did my need for Froggie and his love, his kindness, as well as his wit and sarcasm. I spent weeks inpatient while going through two stem cell transplants; Froggie was there, always. All the attractive nurses that came into our room, which was sealed off from the rest of the world due to my immune system, or lack thereof, fell in love with Froggie. Each time they came in for vitals or to change bags of fluids, etc., he would get tongue-tied and giggly when they would inquire about how he was doing.
Cancer treatment is only a small step in the arduous journey of recovery. When the physicality of it ends, when the nausea leaves and the fatigue slowly subsides, one must begin with an even longer and more difficult journey of regaining psychological and emotional equilibrium. Once again, Froggie’s daily posts and snippets of his life became a focal point for me. My day wasn’t complete until I had, once again, lived through him and his take on this weird yet beautiful world in which we humans exist.
It has almost been three years since my diagnosis. These years have taken their toll on both of us. He is floppy. I am tired. Again, however, we’re meeting each other ½ way, exchanging various forms of strength to help us carry on.

Blissful Relief

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

Body, Tell Me Things!

Waiting for an MRI or CT scan results is no fun whatsoever. Honestly, there is something about bloodwork that feels worse, more challenging, more painful. Perhaps because of the speed at which labs are drawn and the agonizing waiting period. An MRI, as well as a CT scan, require some form of preparation. Blood labs are quick: in / out / get out. I can’t speak for other facilities/clinics, etc., but there is a lengthy waiting period for results. I say “lengthy” because when you’re pacing around like a nervous wreck waiting on results, even if just for a few days, every second feels like an eternity. I had my labs drawn on Friday, February 1, 2019. So, considering the time delay with the weekend, I might not hear until mid-next week.

When I was first diagnosed, I was asymptomatic. As I have mentioned in numerous updates and blog posts, my only symptom was what I thought was a chest cold (cough, slight wheeze, etc.). When the recurrence was noted, I had absolutely no symptoms – none! At the time, I was shoveling snow off my roof, stacking wood, and going on lengthy treks in my beloved woods. There wasn’t a single indicator that something was even remotely amiss.

I don’t trust my own body. It is a sad thing to admit, but I don’t. I wrote a poem about this shortly after diagnosis, in which I kept repeating the line, “body, tell me things!” I was pleading with my being, physical or otherwise, to give me a sign, speak up, and present to me in waking life or dreams that something wasn’t right.

I know my body will eventually heal. “You are powerful, Jeremiah,” my oncologist recently told me. Without wishing to sound pompous, I know this – I already knew this.

In this manner, trusting my body to heal, I know it will always recover. Even after multiple, multiple rounds of cell-killing chemotherapy, a drenching so great I am surprised I survived my two stem cell transplants after the chemical bath I received during my initial treatments, my body bounced back. But somewhere, somehow, it doesn’t communicate what I need to know beforehand, which is most important.

Body, tell me things!

Germ cell tumors, i.e., ovarian and testicular cancer, are hard to detect. Thus, they have often been called the “silent killers”. 19% of ovarian cancer cases aren’t detected in the early stages of development. Testicular cancer, being in the same family, is very similar. A “chest cold” is the symptom of metastatic lesions throughout my lungs; a seizure was my body finally communicating with me that the cancer had reached the end of the line.

Body, tell me things!

I want to trust my body. I want to know what is going on and developing within me. I am paranoid now. One day, I will exercise, usually in the form of cathartic dance/movement, and the following day my thighs hurt. Naturally, this makes sense; I had been dancing ecstatically 24 hours before. My mind, however, is wondering what else might be there or lurking below the surface.

Body, tell me things!

Sitting here waiting for results, I am in that place of treading water again. My MRI is scheduled for February 5, requiring a long wait. I don’t feel this is a life — no, I know it isn’t. Scans are three months apart. So, for 1.5 months, I have been delighted, I have been resting, I have been gaining strength, etc. The next 1.5 months are a time of wondering… questioning… fearing… dreading, sleepless nights, and days walking around trying to retain what’s left of my sanity.

Body, tell me things!

I want to slip back into that blissful state of nativity. The days, the years, all 33, when a chest cold was just that, when sore thighs resulted from exercise. The years in which I didn’t wake up in the middle of the night and dread the darkness because of all the unknowns it might hold.

“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.