Tag: f*ck cancer

The Wordsmith

I fancy myself a bit of a writer, a wordsmith. I never had the confidence I do now to write. I was always worried about my grammar and punctuation. More than anything, I was worried about opening up and spilling it all out, letting the floodgates open and setting for a deluge of emotions, feelings, and thoughts that would potentially leave me exposed to criticism or judgment. After diagnosis, I stopped caring. The last thing I would concern myself with was grammar. Next in line, or perhaps going hand in hand with grammar, were the thoughts of others. I was already emotionally raw on so many other levels; I might as well leave it all wide open. 

Today I met with my oncologist, and, as I expected, it was decided to “keep an eye” on things. The recent MRI showed hemosiderin deposition in the brain, which isn’t as bad as it sounds. These deposits transpire after bleeding has happened, which can occur after any traumatic injury to the brain. The bleeding leaves behind stains and, in time, is broken down by the body and left behind as iron deposits. This is my basic understanding. There is some question as to whether or not this could be residual neoplasm, leftover cancer cells. This raised the question in my mind as to whether or not this is why my tumor markers are rising ever so slightly. But, as stated, we’re just going to keep an eye on it. 

keep an eye on it. keep an eye on it. keep an eye on it. keep an eye on it. keep an eye on it. keep an eye on it. keep an eye on it. keep an eye on it. keep an eye on it. keep an eye on it. keep an eye on it. 

This is when the longing to be a wordsmith falls away. 

The old and young. Young and old. What a madhouse here. No rhyme or reason at the cancer clinic. I sometimes want to ask, in a clandestine whisper, ‘Hey you, ya you! whatcha in for?’ ’cause that’s what it’s like. I’ve never been in jail, but I can imagine what it is. I’ve been in a different kind of prison for four years, or has it been longer? I can’t remember. That’s the problem with these days that blend into months and then merge into years; they all look and feel the same. It’s worse in treatment. It’s always worse in treatment. Even today, a beautiful day, and I swear it was May, yet I wrote March 24 on my intake paperwork. “So, doc, ain’t I done good?” I ask as he studies my file and randomly looks up at me. “I’ve been good, I swear! I’m free to go, right?” I want something. I am seeking something; everyone is seeking something in treatment or after treatment. Craving the words, “You’re good!” Oh yes, they call us survivors; what a strange name. I’ll know what this something is, what it’ll be once I get my claws sunk into it. “Well, why don’t we keep an eye on it.” 

I schedule a follow-up, bloodwork and scans for a later date. But it wasn’t me. I planned them for my body to be aware of my physical being and its course. But emotionally and psychologically, cancer is no longer. 

To be clear, emotionally and psychologically, cancer no longer has me. 

Follow-up scheduled: COMPLY (Y/N) Y 

Current objective: to be and enjoy being? COMPLY (Y/N) Y 

Worrying Overridden: COMPLY (Y/N) Y

Outer Stability Seeking: COMPLY (Y/N) N

Inner Stability Seeking: COMPLY (Y/N) Y 

(Physical) Cancer Status: Tracking/Monitoring 

(Emotional/psychological) Cancer Status: NED (No Evidence of Disease)

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.

“Living one day at a time…”

image

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.

Gin & Tonic​-​Clonic

My neurologist was surprised that, after two brain lesions, one of which required radiation therapy and the other surgical resection, I had not experienced a seizure since my initial episode (March 2016). Evidently, they spoke too soon. My seizures returned recently, as frightening and debilitating as ever. 
This collection of sound works & compositions is my attempt to create a sonic depiction of what a seizure feels like to me. That being said, all of my seizures, except one, have been tonic-clonic/grand mal seizures, & I lose consciousness. Before this loss of consciousness takes place, and after it is regained, there is a mixture of overwhelming fear as my mind loops these broken thoughts that disintegrate before I lose consciousness. My mind resets itself upon waking/coming to. In this state, I often don’t recognize the world around me or the people trying to comfort me. Fear is still present but, more so, a feeling of sadness tinged with nostalgia as the world again comes back into focus. The states right before a seizure begins and after it has occurred are inexplicable; I know the emotions I place upon them, but they fall so short of what is actually taking place in my mind. I am still trying to find words to appropriately describe it… 
I hope these soundscapes and compositions might, somehow, be a sort of substitute for the words that fall so short.

Regenerate

I found the attached photos interesting and indicative of how powerful chemo is and, as previously discussed, how remarkable the body’s ability to regenerate & heal is. I spoke (or wrote, rather) at great lengths on this subject, but never was it clear until I noticed how my fingernails showed signs of damage and regeneration. For me, I’ve expounded profusely about the loss of hair and the symbolism that exists in this shedding process. For some, undergoing chemo & losing their hair is slow and painful, and there is a lot of grieving in this time period. Some find it hard to lose their hair, to be bald, to witness this sort of physical transformation that is often paired with so many others that transcend the physical and plague patients on an emotional and psychological level. In the blink of an eye, there’s a diagnosis, being stripped of a sense of control and supposed certainty, hair loss, losing/gaining weight, emotional outbursts, anxiety, and being simultaneously sleepless and exhausted…  others, like myself and I sure many more, become acutely aware of what was happening on a cellular level, directly within their physical being. Then, somewhere in this time frame, there’s acceptance of the loss, and the concern of hair falls by the wayside in the desperate pursuit of health. Even then, some never get to witness their hair’s return. It was just one more physical attribute and symbol, one of many, that was taken from them.

A few weeks ago, I noticed that my fingernails were starting to crack and become brittle at the base, towards the cuticle. It seemed rather strange, and I didn’t think much of it until all of my fingernails, each and every one, were developing this definitive break in their surfaces that extended as they grew out. i had a hunch it was due to the multiple rounds of high dose chemo, though i wasn’t sure and actually wondered if it was indicating a nutritional deficiency of sorts. This had never happened before with conventional chemotherapy… but the toxicity difference between conventional and high doses is alarming. The distinct line/break running across my nails likened itself to tree rings and their revelation of the tree’s history and experiences. On larger, ancient ones it is possible to tell so much; was there once a forest fire in the area? How severe were the winters? Were there heavy rainfalls in certain years or periods of drought? Remarkably, all these stories are encased in concentric circles. The clear, definitive line across my fingernails shows when the cells started regenerating. Underneath, where the new nail is slowly growing, it appears “remarkably healthy,” according to my nutritionist. The top layer, the old growth being pushed outward and away, is brittle.

There’s no real way to calculate the time frame. Unlike each tree ring denoting a year, the lines on the surfaces of my nails simply mark the old and the new. my nails are like my beard, which is like my hair, they are returning and showing signs of growth and rebirth, but i still wonder when this happens, when regrowth & regeneration actually occur. While inpatient during the transplants, I would have daily (blood) labs done, which revealed when my counts were dropping and bottoming out, as well as when they were starting to climb back. So, on this level, it is possible to see the turnaround. however, I’m a deeply emotional creature, and even though the labs indicated the engraftment had taken place and gave the doctors an idea of when it would be safe enough to discharge me… I didn’t really feel that spark of growth. in fact it was quite the contrary and felt very weak and ill, so much so i had to utilize a wheelchair to leave the hospital.

… my question remains, when does it happen? The line between then and now, if just reading the surface of my nails as one might study a tree ring, is thin, almost nonexistent in some places. But it isn’t so, the line is a chasm; then and now are light years away from one another and, in many ways, i still feel as if i’m navigating the void between the two. On many levels, physically, psychologically, emotionally, etc., the jeremiah that was and is a cancer patient is straddling the two, trying to make a lick of sense of what was, what is, and what will be.  

Hair loss / Hair return

October 2017

I have witnessed my hair fall out three different times due to chemotherapy treatment. The first time was quite a shock. I looked down one morning to see hair covering my pillowcase. But the real shock came when realizing how quickly it happened, how quickly the chemicals flooded my system and started killing off cells. My very first “conventional” round of chemo was administered on a bi-weekly basis, if I remember correctly. This gave me a week in between to rest and recover before the next round. Because the timing of everything was so fast, I started the first round of treatment almost immediately after returning home to New England and, as such, had a full head of hair and a beard. Some people cut their hair close and shave preemptively before treatment, but I didn’t have time. Anyway, on the first off-week, the first week between cycles, I awoke one morning and discovered my pillowcase covered in my hair. That same morning, I stood in the shower and watched as the water deepened due to the clumps of hair forming in and around the drain. i didn’t know then that i would witness this shedding (a term i’ve come to enjoy & one i find apt) another two times very shortly.

The sensation of losing one’s hair, especially at the rate at which it falls out due to chemo, is unnerving, to say the least. Hair has always held this sacred energy; it connects to the past and holds information about various aspects of our lives. During treatment, when it begins to fall out in fistfuls, it’s hard to rationalize this loss by saying, “It’s the chemo doing its job,” when one understands it to be the result of the indiscriminate killing off of cells. It doesn’t necessarily target rogue cells or cells that have gone haywire and/or rapidly dividing cells. This has always been the thing that has frightened me about chemotherapy treatment — it is simultaneously saving someone and killing them.

A closely cropped head of (already thinning) hair is the norm for me. However, when the eyelashes fall out and the eyebrows thin to near nonexistence, it is hard to look in the mirror and not feel alien within one’s body.

Just as I’ve witnessed the loss of my hair 3 different times, I’ve also had the pleasure of watching it return. And, in all honesty, it is a pleasurable experience to watch such a seemingly spontaneous rebirth occur. This time around, the timing couldn’t be better. As the days become shorter and cooler, I’m slowly sprouting a new beard & checking daily if the fuzzy growth appears & thickens atop my head.

A reminder of the physical journey

Graphic Image Warning: The following photos contain post-surgery images and may be disquieting for certain viewers.

October 4, 2017
October 4, 2017
post-op & before discharge from the hospital (May 2, 2017)

When I initially faced a recurrence of the cancer I thought was gone, I noticed how the faith I had in my own body seemed to slip away.

It was easy enough to feel uncertain about my physical being after decades of perfect health, only then to face an advanced cancer diagnosis. This level of instability, of uncertainty, intensified greatly when, feeling as though I was slowly regaining my emotional and psychical equilibrium, to be told, ‘a nodule on the right lung has grown.’

One thing is certain, I must merely look at the hurdles, obstacles, and setbacks thus far to begin to regain this sense of faith in myself, in my being, physical, emotional, etc., even on a week-by-week basis, the ground gained during these “rest” periods, is indicative of how willing my body is to heal, to try…

I have had too much on my mind recently to consider the resection of the lesion in my brain that took place towards the end of April (2017). in the grand scheme of everything, this is so recent; it feels like yesterday that I was awaiting the surgery set to take place the following day. However, looking back at everything since this operation and how much has come to pass… it feels like a lifetime ago.

My sister recently asked for an updated photo of the scar from the surgery. She was here during the operation and remained for a few weeks afterward to help in any/every way possible. Since her return to the West Coast, she has been keeping tabs on the healing process. To her, this is a clear sign of my physical ability to heal and recover. With so much to do, I wasn’t really considering it and, in fact, was steadily moving onward to the next task, the next form of treatment, etc.. the scar itself was another reminder of a setback I faced in this lengthy ordeal, and I was happy to move on and get back on track.  

Today, when documenting the scar for her, I couldn’t help but pause and study the barely visible line running down the side of my head. In this moment, it was the first time i saw it with a sense of awe and gratitude. No longer was it an indication of a setback or a crude reminder of yet another hurdle in the path. But rather an indication of the healing process and a reminder of the physical journey to regain that sense of center.

Birthdays

Birthdays are always an interesting point of reference to look back at time. They make a good starting place to look at a swath of years and note changes, growth, etc., to take one birthday, jump backward to the previous year, and look at the space in between.

On September 18, 2017, I turned 35 years old. Initially, I was not excited about the approaching birthday as the years from 33 ½ to 35 (from diagnosis to present) were lost for lack of a better term. This was my mentality leading up to the day — that that time was irreplaceable, gone, etc.

There are two ways to view this: as time being lost, with those years and months of being sick and in and out of treatment, or as something relative. I wasn’t even sure I would live to see my recent birthday. During the last round of high-dose chemo, when I was at the lowest point imaginable, I asked the night nurse if I was going to die. Feeling as I did, I was sure I wouldn’t live to see the following day, let alone my 35th birthday, which was only a matter of weeks away. Thus, the relativity of age, years, and time.

I awoke on my 35th birthday feeling more positive and ready — I had lived to see the day.

I’ve been trying to avoid dwelling on the past and revisiting the years before my diagnosis. However, I can’t help but remember significant moments, like birthdays, that were not overshadowed by poor health. Time now feels like it’s split into two distinct sections: before and after my diagnosis. But in reality, time doesn’t work that way; life is a mix of moments and events that all come together. Focusing on the present and fully embracing our current moments is essential. While there are events I wish I could erase from my memory, it’s impossible to pick and choose our experiences selectively. Who would we be without these moments, both good and bad? Who would we be without the nights we thought we wouldn’t survive and the mornings that surprised us by arriving?