Uncategorized – Page 3 – The Hopeful Motif

School of Hard Knocks

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“My lungs are black, my heart is pure
My hands are scarred from nights before
And my hair is thin and falling out of all the wrong places
I am a little insecure”¹

Our experiences mould and form the people we become, the way we think and our perception of this world and intern how we portray ourselves in it. Having matriculated through the “School of Hard Knocks²” has in many ways left me jaded, countered by a formidable, incorrigible commitment to remain earnest in my belief that my angels watch over me. A symbiotic push and pull between two opposing forces- driving my innermost thoughts and fears.

In the midst of our grey reality, I consider myself very blessed to be surrounded by expedient hospital staff, whos’ supportive hands have uplifted me, developing a familial bond that stabilizes me in turbulent waters. The admission of your own mortality and sometimes subsequent sickness motivate a person to seek help. Layering current pandemic controls that restrict family and friends in the midst of this horror show can be mentally debilitating, a melancholy that affixes to your brain, lonely and afraid. Having a family support network is a supportive form of therapy that, in conjunction with medical intervention, positively impacts the brain. Irrespective of evidence based studies, I firmly support the psychosomatic phenomena of being able to conceptualize positive thoughts to physical fruition- thanks in large part to our medical guardians, providing the impetus to our metamorphosis.

Our environment deeply and significantly influence our outlook on life thus the people we choose to surround ourselves with are formative in our evolution. Some of us are forced into lonely circumstances, ashamed and destitute. Some will read this and think that I have self proclaimed an army of allies in contrast to their desolation. All I can write, as genuinely and sincerely as possible, is that I am here. I am willing to lend an ear to your struggle, with or without relating it to mine. I am here to acknowledge that the situation is ugly which can be necessary in a world that rams positivity down your throat, undermining a vital component of this journey – grieving.

Maneuvering the denial, anger, bargaining and depression are in my opinion critical to acceptance. I find myself pivoting back and forth between anger and depression, transitioning me to acceptance- opening a door to a life that continues and that I want to make the most of. If you need to scream, I am here to join you because life isn’t fair, but it is fucken beautiful.

In my most recent admission, it was quickly apparent that they would need to investigate the root cause of my bleeding. Beyond the fusillade of bloodwork, I waited in anticipation for the god awful but all too familiar bone marrow biopsy and aspirate. Beginning with local anaesthetic, the stage is falsely set in expectation of low pain. The aspirate needle is contorted and twisted into your puncture site, as the doctor moves with surgical precision and sensory memory to tell them when they’re in place….The aspirate suction begins, a superdocious robbery of fluid that was never intended out of the body and the accompanying feeling of that resistance is felt, unmuted by lidocaine. Then comes the biopsy with similar physical vigor where the intention is to attain a biopsy sample, a tedious and intricate venture. After the marrow is cut, the suction demands delicate hand movements which are critical to securing the fruits of their labor -heaven forbid losing it and having to go again. All in all, not a great experience but dare I say that, to a person similarly afflicted – this becomes our new norm.

Waiting for the rushed results of this marrow have been tormenting to say the least, in my eyes, a binary finding that is either catastrophic or manageable. My anxiety surged throughout the day in suspense of what I would be challenged with next. Am I strong enough? Maybe not as an individual but I knew I would rise to the occasion with every fibre of my being- envisioning walking my daughter down the aisle, a propellant force like no other….

And so-

My good friend and inpatient physician walked though the the doors today declaring that “I had not relapsed” Having been haunted by the anniversary date of last years relapse, my mind has been in a state of discord for months and I finally feel that I can breathe. Unable to craft the words to express my gratitude, I will leave it at, ineffable.

Life can be hard, mine has had no shortage of challenges, yet I channel my strength from those around me, those that I’ve lost and people that inspire me daily. I’m well aware of my privilege, but ultimately you must look outside of yourself to find your pillars of strength- whatever they may be.

Draw a picture, write a song, write a blog if it helps at all. I’m not cured but I cope.

Sometimes we find ourselves in lifes’ haphazard but I believe that overtime we are enlightened to it. I feel this euphoria at the moment that I fully intend to immerse myself in. Though our feelings our fickle, erratic and can change, we need to grab hold of our victories and rejoice in them.

For today, I’ll sleep a little more peaceful, breathe a little deeper and thank my team in the sky for their continued oversight.

Nonna, ti voglio ringrazio per tutto che tua fatto. Tu si mio Angelo.

Ti amo per sempre.

¹Ed Sheeran & YEBBA- Best Part of Me
² In memory of John Coletta

To a Distinguished Heart and Honorary Healer

The devastation of a cancer diagnosis knows no bounds, a crippling reminder of your own mortality in pursuit of answers which we yearn to hear and might later regret.

As patients, we may find ourselves in an alternate reality disguised to those outside of the cancer club in which we host members from all walks of life; divided into 2 categories: patients and allies. These allies support the diverse needs of a fight club whose tenacity is unparalleled in the face of what seems to be insurmountable odds. These allies can illuminate a diagnoses as they push past modern day limits fuelled by compassion and the art of the possible, crafting experiences that are progressively less dim than the last. One of my steadfast allies has been Dr. Loach.

During my journey, Dr. Loach has been a resounding ray of light whose bedside manner should be awarded, emulated and admired. Having seen a multitude of doctors over the years, it has always been apparent to me that Dr. Loach emitted a genuine caring and compassionate quality that I, as a patient, could take comfort in. A Bone Marrow Transplant can feel like a highly redundant, anxiety charged daze- waiting to see which side effects will afflict you. With that said, I would look forward to his daily assessment and delivery of the current state. I never felt as if he was time constrained though I’m sure he was spread thin and beyond all else trusted that his decisions always had my best interests at heart.

In an environment devoid of entertainment, Dr. Loach honed his voice and musical prowess for the benefit of all that would listen. A true testament to his thoughtful character could even be seen in his clothing, a combination of eclectic and sometimes quirky outfits to put a smile on your face – BMTs unicorn. It is without a doubt that his retirement will be felt by his team members but I can only hope that his many years of service were imprinted on the culture of BMT, remembering that the compassionate and caring aspect of the process is just as important as the practical.

I wish you all the very best in whichever direction life takes you and am forever grateful for your impact on my cancer journey.

Your friend,

Adam

Manifest

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Been a minute…

Been broken and fallen but am rising from the ashes of my pain and solitude – trying to combat my weening confidence. My mind travels to my hospital bed unwillingly and without my permission, forcing me to relive the horror of countless treatment and yearning for my family. When will the dark shadow disappear presenting a persuasive argument that I will fail, an attempt to erode my hope, transforming my optimism and influencing who I’ve become. I find myself uttering wishes to be healthy hundreds of times a day, hoping it will be picked up on the divine circuit. And then…seeing my daughters face, suddenly, the shadow is obliterated by the light of her smile and with it comes my solace.

To say my family is supportive is a gross understatement, committed to a fault resulting in their discrete unravelling. Part of my journey has involved waves of guilt, ashamed by the dependency that I have forced on my loved ones, though I am eternally thankful for them. On the other side, the clarity I have with my relationships has evolved seeing action in place of words – affirming who I can count on- a rare perspective.

124 days post transplant and I know its time to look to the horizon, leaving behind the uncertainty and fear of my past. I envision walking my princess down the aisle, a healthy, elated stud overwhelmed with pride at the woman she has become- hoping that in some small way my experience added to her strength and fortitude.

I look to the future, one foot in front of the other hopeful that my demons will retreat as I’m stronger today than the last…

Regards,

Evelinas grandson.

Erosion

Eating on my hospital bed, the curtain is closed to block the reality that looms in front of me, natures ticking bomb. A timer seems to be set for all of us, a destiny in which we have no control- hovering through a predefined path indignantly. Resistance seems futile when imagining the slope of my uphill battle, sometimes 90 degrees where even gravity is against me. In our lives, we are blessed by people that compliment our ride but that we soon learn are not affixed to it. Within the last 2 years, I have been confronted with loss. Loss for the life I had and took for granted, my nonna 1 year departed and for everyone I’ve dragged along the way.

As I sit here collecting my thoughts, I find myself suffocating, missing the person I was and forced to become. We know from an early age life is fuelled by death. One is necessary for the other to flourish yet our experience is so drastically different. It is different because we can’t miss what we never had yet can easily pine for what we did. Perhaps we have a limit to how much or how many people we can lose, a slow erosion like rock into sediment.

Outside of my bubble, I have been monitoring a close family crisis- close lipped and closed curtain. I tend to avoid writing about subjects that make me uncomfortable, thinking the written word may perpetuate a bad situation. It was for this reason that I remained idle, hoping and praying that my uncle would rebound this one last time. He would come through this last hospital visit humbled and appreciative of his gift – a come to Jesus moment that he so desperately needed but never found.

We experience life with highs and lows, only really to appreciate one in the midst of the sharp harsh contrast of the other. My uncle was a man that forged a life born of strong family values and a steadfast loyalty towards his inner sactum. Separated by time, our paths were produced on a similar stage, with common characters that resulted in a lifelong bond and brotherhood. My uncle was a larger than life personality and people pleaser, one of his most admirable traits and faults. A lifelong socialite, he excelled around family and friends and reserved judgement in lifes’ pitfalls. My hope is that he is at peace and aware of how much he was loved. I will forever regret having missed the opportunity to say goodbye though I will always carry our good times, life lessons and assigned moniker:

“Bush-pig”, said with life-long gumption and enthusiasm”

A term of endearment that I whole heartedly keep close to the chest, exclusively reserved for my uncle.

❤ Nonna, you can give him a pass on the nickname. Take care of each other.

___________________

Wimp C

Until we meet again. 1934-2018

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Mio Angelo

It’s a sobering reality to be caught reaching for the phone only to remind yourself that the person you’re calling isn’t there. My diaphragm swells up, inflated by heartache, followed by a feeling likened to pleural effusion- gasping for oxygen while submerged in a bayou of tears. The memorial of her passing unleashes imagery that invades my mind, a loop that has branded me in a state of perpetual mourning for the last 2 years. I turn to my writing to attempt to extract what she means to me, an endeavour in which I can’t help but fall short, as words as I know them, don’t do her justice.

My eyes are closed as I try to summon my memories, begging whoever will listen to not dampen them, to keep them vivid and loud, however painful. I pray to whoever will listen that she knows how remorseful I am for not being around when I couldn’t and even more for all the times I could but didn’t…

Nonna,

For all the life lessons, nurture, and example you set for me, I am forever appreciative. I remember the good times and continue to look to you when I’m uncertain or my faith falters, to be the man that you saw in me.

The gratitude I feel for you holding on in the hysteria of your ascension replays in my mind, raising Marquesa to see the woman largely responsible for her father, to help him say goodbye to his life-long best friend- flashing in my mind like a strobe light on the edge of a seizure…and then you pull me back.

Thank you,

On the anniversary of her passing, I leave you with her eulogy, raw and airbrushed with one edit, her newest great-granddaughter added to the Coletta team roster.

Our family has requested a virtual memorial mass in her honour, live streamed at St. Clare of Assisi church on Monday June 15 at 7:45 am EST. The mass will also be uploaded to their Youtube feed if you would like to join at a later time.

For anyone that wishes to join virtually, please click here to navigate to their Youtube page.

Life is a rollercoaster, a series of ups and downs that has your heart beating out of your chest one minute and the next -waiting in curious anticipation of the next sprint. Throughout our journey we’re surrounded by passengers that enrich our lives and give meaning to our time on this earth, kindred spirits that we’re blessed by but not permanently affixed to – mine was my Nonna. My mother gave me life; my Nonna gave me the motivation and courage to push through it uninhibited and unapologetic.

June 15th marks the day my grandmother exited this ride, my heart broke and my motivation stalled. It has become all too apparent that our time here is short and irony has it that our loved ones time be even shorter. It is then, only appropriate that I recount her impact on my life.

I’ve been told that God blessed me with an unbreakable bond to my Nonna that had been fostered from birth. Our relationship can only be explained by the word love, not in the loose social context that it is exercised but true to the meaning that it was intended. I feel as though to truly understand her level of involvement in my life, I would have to describe Nonna as my second mother, biggest supporter and confidant. In my life, I have turned to her example to find the strength to be resilient in life’s greatest challenges- finding comfort that we endured together. I can recall listening to her routine telephone conversations where she would boast seemingly menial accomplishments – which granted may have given me a complex but also conditioned me to always see the best in myself. Some of the discussion topics included:

The entire street commenting on how “stirato” (ironed) my uniform looked, a testament to her tireless pressing efforts.
My uncanny ability to eat an an entire panettone or pizza scarrola and occasional gelato before dinner. Like any good Italian boy, a good appetite was considered admirable. A concept that truly fed into my iron man physique.
My choice to not only partake but enjoy household chores. This was a foreign concept to that generation but a trait that I inherited and evolved, primarily in our Saturday rise and shine mornings. And by shine I mean, the bathrooms, furniture, kitchen and anything else we could clean to brillare (shine).

From infancy to early adulthood, my sister and I had quite successfully relieved Nonna and Nonno of ever having to feel empty-nest syndrome. Her open door policy, I feel, was a reflection of her resounding commitment to family – a trait that her lineage would continue to parlay into their individual households. I had always admired Nonnas fortitude in response to difficult situations, turning to her steadfast faith. I can vividly remember hearing her speaking alone in a room – which I would later come to know was praying. Sometimes it was also her speaking to herself or venting because I had done something wrong- loud enough so that I could hear and…quickly

– Apologize OR

– Fix what I did

A true matriarch, her devotion to her family was unrivaled and fierce. I say fierce most intentionally as it was ill advised to cross her and especially her legacies. Whether I was right or the many times I was wrong, her maternal instincts sheltered me from harms way and instilled in me the true meaning of unconditional love. I must commend her on maintaining that stance in spite of my teenage shopping trips to the bar which she frequently said left her with 0 bottles of “whishkey”

An exuberant personality, one of her favorite pastimes was to speak on the phone, a tool to stay connected to her family and friends and a way to amplify her reach as she praised her loved ones. Without fail, my friends would normally be witness to Nonna beaming with pride as she triumphantly explained that she raised me. Irrespective of the audience (my mom included) her endearing recollection of hiding me in a closet so that my mom couldn’t take me home was whimsical. “hi me, hi me” she would re-enact time and time again- and Nonna would always comply. I can still feel the mink coat on my face as I stood still, hoping that I could stay with my best friend. I should mention that my success rate was good.

She was the champion of our family, a journey that began 65 years ago and evolved to what we see before us today. She is survived by:

Her husband, 3 daughters, 1 son, 10 grandchildren and 2 great-granddaughters.

It seems that the tables have now turned and she is hiding from me, out of sight but never out of my mind and heart. Until we meet again, I find solace in her watching over us accessorized with a set of leopard print wings and crystal halo.

I love you, Nonna.

Riposare in Pace.

Mi manchi di più ogni giorno che passa. Sei per sempre nei nostri cuori.

Sei la mia forza quando sono debole

Revolving Door

With a constant bed shortage, there is no doubt that this disease is indiscriminate and afflicts the most unweary prey. Unlike my previous 2 sentences, this stay has proven to be a true test of endurance – on day 44 and only 1/3 of the way in. In contrast to my first induction, this round seems chaotic with 5 room changes since I was admitted. More disturbing are the number of patients that have come and gone as I remain trapped in time, idle and frustrated.

Most of the relationships bonded in here are anchored to the admission and fizzle away upon discharge. Having seen friends pass away while undergoing similar treatment has hardened me to the possibility of forming friendships in this setting. A defence mechanism? Easy Pavlov…no need to infer.

The doctor just told my roommate that they’re aiming to discharge him by the end of week. What I would do to hear the same words or even the possibility of some solid discharge timeline. In my case the topic seems almost taboo and I’m left wondering WHY. I suppose I understand why for this week (starting a new antibody treatment) but beyond that, I’m scratching my head.

Perhaps when my roommate does get released, I can move to the side with a window. In place of a window I now have curtain with a view much to be desired. The fluorescent lighting stains my surroundings, like looking through an all day jaundice lens, gloomy yet typical of hospitals. The ever-present stench of bleach and overused and under scented bed linens engulf the floor, reminiscent of a 30 year old cloth that has been regularly laundered with minimal detergent. I miss fabric softener.

If nothing else, the benefit of making connections in this setting is the relatability that can come from someone in your shoes. Though every person and situation is unique, the 1 constant is that the disease has grossly impacted patient lives. Journey sharing can be a double edge sword, sometimes hearing the good as well as the bad but this is usually trumped by the comradery felt in knowing you’re in the trenches together.

Realtime update

Not all is lost – I just heard some promising news from the senior staff physician. Assuming that I don’t have any adverse reactions to the drug within the initial 8 days, I can be discharged for the remaining 20 days of treatment! I’m reluctant to be excited as I’ve been at odds with lady luck but it may be time for a reconciliation.

Maybe I’m next through the door, for a short while at least.

Here’s to hoping. Cheers.

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Rumination

When we love, we love deeply, beyond the depths of logic and reasoning and to the point of near insanity. We apply logic behind closed doors, beneath the surface of reality but dismiss said logic in real situations. Why? We live in a society of love drunk idiots, immersed in emotion and devoid of reason – WHY?, maybe because we can. Maybe because our emotions are what define us as people, amplified by our spirit to paint the picture of LIFE.

I find myself contemplating the what, why and how as I look at my reality. Where once I felt a sense of control, I now accept that life, in all its complexity, is an anarchist. While a solid and consistent pattern of sound decision making may point you in the right direction, understanding that you can be thrown off course is one of lifes’ great lessons. In tern, one of lifes’ great challenges is in the ability to course correct, resilient and determined.

Life is inconsistent, unfair and unsurmountable, as hellish as Dantes inferno and magnificent as Mount Olympus. A journey fuelled by opposing forces, it is both cruel and kind, wondrous and devastating. I find myself wondering how I can influence the outcome. Is it fate? Are you a shitty person because you’ve done shitty things? Are you equally as shitty if you’ve done shitty things that were done to you? Are we a product of our past in the present and what does that mean for our future? Think about it and get back to me…

…

Further to my last post, I was able to have my furlough approved to go home for some much needed R & R. Now back in my curtain sided cell, my mind is on hyperdrive as I look forward to what awaits. Most in the cancer community would denounce this type of forward thinking, encouraging an incremental approach 1 day at a time. Yeh, yeh, yeh – I get it but it is in my nature to think beyond this nightmare. My counter to the community – I feel that I can better brace myself for impact by thoroughly understanding the incoming fire. I’m getting there.

It’s important to remember that no person should be defined by a single action or decision. My tendency has been to form an opinion of others based on an initial impression landscape, majorly influenced by appearance, decision making and personality. The result = a superficial determination at best, inauthentic and unrepresentative of a person. You only ever really see a fragment of a much bigger picture so judgements are best reserved for the wise and made by the ignorant. Wait until you have the blisters from walking a mile or 2 in their shoes.

Life is both cruel and kind, a vibrant multicoloured abstract canvas for us to interpret through a dichotomous lens.

What do you see?

Journey

PSYCHO THERAPY

Day 41 and I find myself clawing at the walls to escape, escape my reality and retreat to my happy place. Hospital walls were built to house the ill and as time passes my admission feels increasingly more fraudulent. At the moment, I have the benefit of feeling relatively well, improving with each second that passes from chemo – knowing that additional treatment is on the horizon…looming.

Finally, decisions are being made regarding my treatment as teams of doctors work to reach a general consensus. Tentatively, I am scheduled to start the ALL miracle drug over the course of 28 days. After the unwanted cellular clean-up, I am slated to be moved to transplant, my Mount Everest.

Hoping to capitalize on this intermission, I have asked to be granted a reprieve – translated into hospital terms as an overnight pass. Almost mythical, the acquisition of an overnight pass has proven to be quite the feat, pushed to the very top of the house to approve my furlough. Waiting to wait, I sit here in anxious anticipation of the outcome, prepared to argue my case.

BIO/PSYCHO/SOCIAL

I find that hospitals have a tendency to focus on the BIOLOGY of disease and its’ treatment without or with little consideration for the PSYCHO and SOCIAL aspects. This continues to be an uphill battle as I stand firm in believing that the medicine of the mind is family and home- without which desiccation is inevitable.

The nature of my disease and treatment encourages isolation, an easy way for an introvert to evolve into a recluse. Social constructs are unwelcoming to the sick, projecting an inclusive illusion with an opposing reality. And so…what am I, are we, to do? Push beyond the discomfort and feeling of insecurity, I know that I’m one of many and that I have not changed as a person, only my exterior with a head to toe body wax.

Interesting how we devalue time we have in loads and grasp to precious hours when it is in short supply. To the common man, 24 hours passes with a daze of people, places and things and for me- an opportunity to refocus, breathe in my own environment, drink out of a real glass and sleep in my own bed. How perspectives change….

And so I wait as we sort through the red tape, politics and personalities.

Till next time.

reprieve

Its A-LOT

Swimming in a pool of ambiguity, it is easy to lose sight of the prize. The nature of the situation demands a high degree of agility and servitude to an alien subject matter to avoid having to relinquish the nominal control that I desperately try to linger to. The benefit of having experienced a year in these trenches is that I am better equipped with knowledge by way of osmosis as well as my individual experience in rolling the medical dice. A double edge sword, amidst the ongoing barrage of medication- I find myself anticipating the expected toxic side effects, lambasted with nausea, stricken of energy and diminished spirit though my mind has not abandoned me.

I am abundantly aware of 2 schools of thought, the champions of the blissfully ignorant and over zealous self proclaimed medical experts – more appropriately termed enthusiasts. I believe that balance is key to avoid falling into either rabbit hole, knowing enough to advocate for your life while respecting that the medical community will have a leg up on the subject matter – though I have been able to accelerate my own learning curve.

Here is where I am to date:

WHERE AM I V3

Irrespective of health struggles, I belief that life is a cumulation of evolving baselines that change in response to our decisions and environment. The degree in which we choose to be plugged into these factors can largely influence our reality and the way that we perceive the world around us- a powerful notion for the recovery community. I might be as bold to say that the psychosomatic benefit could trump the IV tree but best not to dabble in such highly contested evidence absent theory…

Bottomline.

I have not chosen to be in this position and will not be generalized as a statistical anomaly devoid of optimism. I expect a comfort level that is equal and appropriate to the task so why would a journey through this dark cave be any different? I choose to leverage what I can to avoid missteps, time delays and encourage the best possible outcome.

If not, what’s the point?

Happy First Birthday Marquesa, Love DAD.

Marquesa,

To my princess, the light of my life and my momentum to fight- your first birthday is already here. To simply tell you how much you are loved would be an understatement, a statement as obvious as the suns’ heat or that your smile illuminates a room. As I sit here away from you, intent on recovering for many birthdays to come – I reflect on how truly blessed I am to have been chosen to be your Dad.

I imagine that one day you will read this and try to interpret what it means, where I’m coming from and why Dad wrote you a note. If for no other reason, I want you to know that you have a superpower. Whether you’re young or older, this will remain true, despite the generally accepted falsity that magic does not exist. From concept to creation, you make me more resilient than I could have ever been without you. You keep me strong when I’m sick, motivated when I’m tired and reset my perspective when it needs a tune-up. I see the very best version of myself when I’m around you, affirming that you are without a doubt, the best and brightest change that could have entered my life. This is no joke- an impressive feat for a 1 year old though it comes as no surprise that you’re advanced.

Even more, as time passes I believe that your power will evolve so that you can invoke your ability when times are tough or your spirits need lifting. If you ever need a reminder, I want you to look at this message and hear my voice (I will not get sick of reading this to you and you’ll never be too old to ask).

Know that you’re a reflection of my heart and that you can find me in yours whenever you need me. Know that you’re not limited and should always be encouraged to chase your dreams – drawing inspiration from your minds eye to dabble in the art of the possible. Know that God blessed the broken road that led me to you and that we will always find our way back to eachother.

Now, on the eve of your birthday, I look forward to seeing you and being able to feed you as much cake as your stomach can tolerate (more than mom might like though I’m confident that we will get a pass).

To my little marcher, Frankenstein walker, the world is your oyster.

Happy 1st Birthday your royal highness & my best friend.

Love always,

Dad

¹Ed Sheeran & YEBBA- Best Part of Me ² In memory of John Coletta

¹Ed Sheeran & YEBBA- Best Part of Me
² In memory of John Coletta