Tag: healing

This is a memory I hold dear  

I had another seizure yesterday. We’re attempting to get the medication right, and I stopped one and increased another. Yesterday, however, I wasn’t at the target dose. That’s the only logical explanation. Regardless, it has left me, as all my seizures have, physically and emotionally worn.

It happened while on a woods walk with my mother. Luckily, she was there. I had enough of a warning that I was able to indicate its arrival. She, in turn, sat me down safely… then it arrived.

I distinctly remember the cold earth underneath me when I started to come around. Though we were in a place along the path with no snow, the earth was cold and damp.

My mind was a jumbled mess, as it always is afterward, but somehow, we managed to walk back to the car. In a post-seizure state, at least for me, nothing adds up for a while.

Today, I realized what was going through my mind as I came to that damp earth: the memory of being a child of about 3 or 4. Evidently, I had asked my mother if, when the snow melted, I could play in the mud. So, I did just that. I sat in this puddle of mud, & plastered it upon my legs. The most vivid part of this is the cool dampness that soaked through the legs of my pants.

I have been told I have the memory of an elephant. Though, I think this was initially meant as an insult, as I tend not to forget things. It isn’t that I choose to remember the positive over the negative, or vice versa, I just remember things. During treatment, the traditional “chemo brain” affected certain cognitive functions, but my memory held strong. They became little islands I could swim to when the storm raged.

I believe in memories and their potent influence to transport someone.

Two years ago today I went to my dear Friend Jose and his partner’s house for dinner. I immediately felt this sense of warmth and comfort in their abode, feeling welcomed. They both exuded this; it came from them as individuals.

I love Chicago. I wish I had left on different terms and not for medical reasons, but such is life. I didn’t, however, enjoy the graduate program I was in there. I feel privileged to have studied there and received my MFA from such a school, but the program, or my home department, didn’t agree with me on many levels.

Jose was one year ahead of me in his studies there, and we became friends. He had a very older brotherly feel, and I felt comfortable sharing ideas and speaking openly about several things. This comfort, naturally, was part of the welcoming energy that greeted me for dinner that night. We sat casually in their kitchen, had delicious homemade vegetable stew, drank sparkling juice, and talked about life and art. I clearly remember walking up several flights of stairs to their condo entrance and, once at the top, wheezing and being winded. It was strange and disconcerting to be so breathless from just a few flights of stairs. The dry cough appeared a few times that night, too. A few weeks before our dinner meeting, Jose and I met at Starbucks and decided to take a little stroll after our tea and coffee. In mid/late March, Andersonville has such a nice feel — spring is just oozing out of everything and ready to pop overnight. The dry cough was present then, and I said I didn’t know what it was from, but I couldn’t get rid of it.

This nagging cough didn’t prevent us from having a lovely dinner a few weeks later. I hadn’t met Jose’s partner, now husband, but I enjoyed his honesty about art. It was a breath of fresh air to step away from the heady, overly conceptual art-school realm and just hear someone speak openly about what they thought and how they perceived the work. We talked about my thesis work, and I was excited to tell Jose how I did, eventually, decide to have this large painting I was working on split into two. I say “painting,” but it was a gestural study that consisted of ritualizing rubbing carbon dust onto linen. When we had last met I hadn’t decided if splitting it into two was the best move for it on a conceptual level. I finally opted to do so because the two, in my mind, divided time, past/present.

The division of time… I haven’t considered this phrase before for the various circumstances that would occur very soon. The following day, the most definitive division of time occurred in my life; I awoke and felt nourished by the delicious soup and conversation, happy that I had discussed my thesis work and received feedback. I was still full, literally and figuratively, from the evening. I felt positive that the end of this chapter in my life coming to a close — I was ready to move on from grad school. However, the cough was more present, and I began to feel worse as the morning went on. It was a bodily feeling, this heaviness, this burden that seemed to rest upon me. This pervasive feeling that something wasn’t right deep inside of me. Sluggishly I prepared myself for the day. Outside, the weather was glorious, and I stood for a few moments in the sun to soak it in. I envisioned the sun’s powerful rays penetrating my being and ousting whatever was causing the cough and the feeling that seemed to weigh on me. I felt even worse as I approached the red-line stop closest to my apartment. I thought it’d be best to return home and rest, to let my body be still for the day, put aside the demands of school and work, and just rest. I turned around and made it just a few paces before my body contorted in a way I had never experienced. This lack of control spread across my face and rendered me incapable of calling for help. It ran down my arm, bent my fingers inward, and took the strength from my legs, and I collapsed, then… darkness.

I hold onto memories as a means of self-preservation. I think, oftentimes, about how I would describe something in a book or how it would appear in a play, how I might see it and hear it from an outside perspective. By description and recall, there is a solidification, a movement from, perhaps, a fleeting moment in time and space to a solid foundation upon which something can grow and be constructed. How would I describe the kindness I felt entering Jose’s for dinner? How would I word the fear I felt when I had my first seizure? In remembering, in actively assisting in the solidification of memories, one can access the warmth during the cold and recreate the laughter during the flow of tears. One can nurture compassion and love for those struggling. Being sick has taught me this. I held onto memories before, well before my original diagnosis, without any real understanding as to why. Like the matriarch of the herd of elephants who leads the other members miles and miles to a certain watering hole during times of drought, memories can save us; they can nourish us.

The photo attached is a still from a performance video Jose and I collaborated on. I’ll refrain from drowning you all in the ‘heady, overly conceptual art school” BS I am happy to have left behind. The basic premise; two beings tethered by a length of rope, each takes a turn walking while the other remains the grounding center, a place of pivot. One can walk as little or as much as they wish. The other merely witnesses and rotates with them. It, for me, was about an exchange of guidance and care… it was about trust.

This is a memory I hold dear.  

Returning

I went to the treatment clinic today for my 6-month post-transplant immunizations. The stem cell transplants wipe the slate clean, literally, and I have to re-immunize myself. The schedule for immunizations is 6 months out, 12 months, and then 18 months out.

Going back to the clinic is so hard, even for something as quick, easy, and relatively painless as 4 injections. So many memories are contained in that building; every emotional and psychological up and down along the seemingly endless journey to getting better is linked to this place. Better, as if ‘better’ was some destination and I knew the general direction but had no map or even a sense of distance to gauge anything… or everything.

My salvage treatment, the chemo that was administered after the recurrence was noted and before the transplants, took place around this time last year. Today, when I entered the actual treatment room, the lighting was very similar; the way it poured through the windows on the eastern side of the building, bouncing off the individual treatment chairs all lined up along the wall…  it was almost identical. I could feel my stomach turning with the memories that were percolating.

Time doesn’t seem to change inside the clinic itself. While waiting for my oncologist’s approval of my immunizations, I fumbled with some paperwork, but I was really observing, watching slyly life move around me. All the chairs lined up along the walls were full; each one held a patient. They added more chairs since my last visit. They even expanded the parking lot. If this was a restaurant, one might say, “Business is good”… in this case, the additional seating and parking just seem kinda sad. Some patients had visitors or family members. Some slept. Others stared at their phones, seeking a connection to the world that was, after all, a few paces away, but, as I recall, this proximity seemed like lightyears.

A barely audible playlist was turning out one feel-good oldie after another. The Beatles told me that the sun was almost here and had been an awful, lonely winter. The Beach Boys, singing in their beautiful harmonies, waxed poetic about how it’d be so nice to be older, and then they wouldn’t have to wait so long. Yes, that’s the type of world, so they told me, that they belonged in.

The nurses bless them all, check in on meds, and inform the patients about what they’re getting. They make small talk and tell jokes to keep things seem normal. I keep hearing them remind each patient that today’s the first day of spring.

There was a younger patient there, maybe a little younger than me. The majority of patients were older, so the younger one stood out. I bet I looked like they did; out of place, antsy, already keen on leaving but knowing the long treatment day and week are just beginning. They flipped through a worn-out, well-thumbed magazine, but I could tell, both by their empty gaze at the pages and being in that very same place myself, that their actions were just an empty gesture, a distraction, escapism.

Time may feel constant, or even stagnant, inside the clinic, but it is moving forward. I didn’t recognize anyone except for the nurses, and though I don’t know, I like to think that they, too, are resuming something that resembles a life. I like to think that they finally arrived at ‘better,’ even if, like my journey, they had to stop, ask for directions, change a flat tire, take a few detours, get lost again… Even if, like my journey, they are still en route, they can at least see the city lights on the horizon. 

image

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.

Headgear

This fun-looking piece of facial equipment & headgear is not for a new sport but rather to keep my head entirely immobile while the procedure (stereotactic radiation, or SRS) is being performed.  This fashionable piece was constructed a few weeks ago when I went down to have an updated MRI (used for planning the procedure), to have a “bite-block” (dental mold) constructed, along with a fancy, net-like structure that was formed to the back of my head.  …  Then, this elaborate gadget, which I’m sure was used during (the) inquisition, was bolted to the table. 

1.5 months difference

I found the contrast between these two photos so striking! It is truly amazing how quickly the body begins to heal and repair. Even while my old hair was still falling out, I could already start to see new growth. There is a difference of about 1.5 months between these two photos.

Though my physical body is well on the road to recovery, the emotional and psychological aspects of my being are encountering new hurdles every day.