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?

Don’t feed the BEAST

“When I find myself in times of trouble

Mother Mary comes to me

Speaking words of wisdom

Let it be, let it be

And in my hour of darkness

She is standing right in front of me

Speaking words of wisdom

Let it be, let it be”

I’m back, in desperate need of an outlet to expel my thoughts and extinguish an ever-present fear that was ignited nearly 2 years ago – the very real and time bound reality of my own mortality. For my own selfish reasons, I find my instinct to turn to words in times of crisis, allowing myself to write the thoughts I’ve condemned. To push myself beyond the narrow boundary of positivity and accept that being on the mend is not piecemeal and needs to be whole- this includes the thoughts that your supporters have classified as black sheep. 

Despair can be a a challenging emotion to navigate, difficult to accept and determined to weigh you down into a dark abyss. Since my diagnoses, a dark cloud has loomed and followed too closely, bombarding my own mindfulness. A brigade of dark noise and worries ensued, enveloping my thoughts and continues to devour as long as its fed – a true glutton. The buffet is over. 

What is an adult? If you define it as the years post-partying, blissfully ignorant and content with life essentials – this came to a screeching halt at 23. Adulting has proven to be a series of challenges testing my mental grit, physical stamina and  potential to see beyond the surface. As a naive boy I evolved into a naive man that was punched in the face with the taboo phenomena of unhealthy youth – a notion that I dismissed until I couldn’t. 

Even in the darkest of places, light exists and in my case an enduring flame that is family. Though my life has taken considerable shape over the last 2 years, I refuse to allow the darkness to overshadow the light. Reminiscent of the famous socially ubiquitous door analogy, I find life to be a series of ebbs and flows where we timeline our outgoing and incoming tides, acknowledging that both contribute to our mortal erosion. Incoming phases test our courage to welcome the new followed by  subsequent outgoing tides that test our resilience and ability to let go. 

Consistent with the ebbs and flows of the time, my daughters grand entrance would shortly precede the departure of our matriarch and my biggest supporter, Nonna. RIP

As I write from another room at PMH, my crisis that I have chosen to draw out is that I have fucken relapsed. That is the eloquence it deserves and that I will continue to serve up.

I’m calling an intermission to avoid feeding the beast at this time of night. 

Talk soon,

Happy First Birthday Marquesa, Love DAD.

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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.

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Love always,

Dad

As I Walk Through The Corpses

Here’s one that I blew the dust off of in honour of Remembrance Day.

A Letter to my Family

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As I walk, my footsteps paced, 100 gazes meet my face.

Reflective metal revealed by light- aware of danger, justified stares?

Thunder roars yet the sky is clear- screams of men in pain and scared. Contorted face frozen in time, no movement or emotion without life.

The slither of a snake slit on the enemy’s face- are we not serpents to the reciprocals’ mace?

We are right, cause justified- our enemies fight of for a lie. Though I will brave the fight ahead- how can their cause be worth the dead- obscene mentalities battles amidst the eyes of indignity knives and fists.

The times of silence abolished – gone, nothing is quite, noise lives on. Hysteria mounting, no end in sight when avenging the fallen of this ongoing plight. My faith is weaning , as I  lie here awake- my condition of sleeping is now theirs to take.

Screams of the righteous  -haunting my dreams – vivid and lasting  -while I still breathe. Then I think back to my daughter afar, my wife and my family whose door left ajar. Ill reload my rifle and prey in this trench, channel the dragon who’s fire I’ll blast.

I’ll hold on to the valour admist the tumultuous hiss- a landscape that materialized  from Dantes abyss.

The truth is my darlings- I’ll do what I must and give what I give…

I’ll walk through the corpses and die so you live.

Written by Adam Coletta

The Gangs of Coletta

Anger is one of those emotions that can be easy to default to and rapidly multiply – not unlike the bastard leukemic cells that invaded my body. As I lie awake processing the news from the night before, my instinct was to rage, to amplify my indignant stance with such vigor that it would disengage my comprehension and alleviate my terror. This of course was an alternative to the Delorean time machine that I would have preferred but that might be on purchase order for the next several decades. Great Scott!

Time seemed to stand still as my anarchist mind abandoned all control of its optimist environment. The Gangs of Coletta we’re multiplying- dominated by The Wicked What Ifs, Hellish How Longs’ and Angels of Death. I felt as though I was having an out of body experience, staring at someone that I didn’t recognize and never wanted to be. I’m sure this is true of any diseased patient that is playing cliffhanger in their mind and so you might think I drew comfort from that universal commonality. Fuck no – because logic and reason were abandoned in my brain- remember ^?

I continued to overload my brain with a barrage of pessimism, a short circuit ensued that would have me catching Zzz’s for a few hours.

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Day 2

Waking up on a makeshift bed in a hospital cell, my hopefulness in the possibility of the dirty L word being a figment of my imagination quickly dissipated. Reality can be a crude state, especially when it materializes from the unexpected – bluntly stabbing with every breath and consideration for the downstream impacts. As I started to transition from the “me” side of the equation, a new set of concerns mounted as I anticipated the hysteria from my family. I should mention that this is now the Saturday before Thanksgiving so you can appreciate my reluctance in wanting to reach out and make any impromptu announcements before clearings up some of those x’s. I did call one person…

Everyone has that 1 go-to person to level set, a walking talking Ativan that you want to have to navigate a bad situation…introducing my sister, Magellan. I’ll refrain from going into the details of the conversation and allow you to infer the reaction of any sister who has been told that their brother has cancer…

With my pregnant wife at my bedside, I was eagerly awaiting the ominous transport to Princess Margaret. With my sister en route and still in the discovery phase of the grim news – I decided to sidestep this conversation with my other immediate family until we knew more.

Upon my arrival at PMH, my senses were wildly sensitive to my surroundings. I can distinctly remember being attached to my first IV bag and the corresponding oncology stamp that lit up the screen of the IV pump – another affirmation of this grotesque reality.

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Throughout the course of the day, my processor was being overloaded with hypotheticals though it became clear that a bone barrow biopsy would be required before ordering treatment. Again, true to form, my situation would be more complex to manage because of my existing anti-coagulation therapy. Translation : the medical team have to manage my mechanical heart valve (that uses blood thinners as a preventative mitigation tactic for clots) against the fact that the leukemia is essentially suppressing every back-up clotting protocol (which puts me at high risk for internal bleeding) HENCE the catalyst to this adventure, the blood in my urine.

“Let us have the specialized teams weigh-in on this and we’ll get back to you with their recommendations ”

We were inching but knew more than the day before. And so day 2 came to a close.

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ENIGMA

This is my experience and perhaps a loose frame of reference for those of you facing similar challenges. If you’re able to relate, that’s great and if not- bear in mind that every journey is unique. Here is where I started

DAY 1 – My first 24 hours

Our life runway is often thought to be infinite, falsely reassuring us that we’re able to lift-off unrestricted by time. This inaccuracy can and does result in a monotonous life, circling the same daily perimeter – slowly but surely erroding our quality and lust for living. We do because we’re told to and buy-in to the status quo and social norms that are imposed on us. We accept them because they sometimes yield what we’re conditioned to think is important: money, possessions, status, an all out dick measuring contest. It’s interesting how your perspective can change…

Red-Flag

Red Flag

My Friday was like any other; the bookend to a stressful corporate workweek with the promise of some much needed couch time for this self-professed homebody. Having received our pregnancy news earlier in the week, I was walking on sunshine with little regard or attention to life’s oddities- albeit someone ^ was waving a red flag (quite literally). I know you’ve heard the expression seeing red but I was straight up peeing red – not as alarming as you might think because of my history of blood thinners. It was catalogued in my mind as a low priority issue and probably related to my INR (which I had tested earlier that afternoon) for my mechanical heart valve. A simple blood draw would clear things up and I could have my anticoagulation therapy adjusted. I forgot to tell you, like most Italian families, many of us have come to the conclusion that we’re members of the medical community – unofficial physicians but MDs in our own right. Granted, we have spent a lot of time in hospitals so that has to count for something? In this case; however, my gut thought it best to seek reassurance from one of those hoity-toity licensed doctors to weigh in on the prognoses. So in my true form, I decided to kill 2 birds with 1 stone. My wife picked me up and we were en route.

Who’s the other bird?

Unfortunately, my main man –also known as Nonno was checked-in to the hospital earlier that week. This encouraged me to get to the hospital so that I could be assessed by an emerg doctor and visit Raffaele.

The first visit was to the emergency department, which I should mention is in a large trauma hospital or cesspool of germs. Every beige vinyl chair was inhabited by some kind of sick person who looked like they had been de-prioritized by virtue of having a pulse. This did not bode well for me or my symptom although I went through the motions and registered with some preliminary tests. Later, the charge nurse was able to confirm my assumption by assigning a 10-12 hour timeline to the vast majority of patients (because of that damn pulse). My gumption was now weaning and abandoning the thought of being assessed here, after all I felt decent and my high INR count was likely the reason for the bleeding. And so, I moved on to the other bird in the mix and made my rounds to visit with my grandfather and ever-present family member stationed bedside.

The problem with self-diagnoses is

I get that no one likes hospitals but I have a revulsion so strong that I would describe the affect as borderline anaphylaxis (without a shower). Driving home I felt as if I were charging to a finish line, my Neverland fueled by happy thoughts of my wife, bed, and shower (my benedryl for hospital exposure).

Pulling onto my street, the phone rang in my car displaying an unknown number that my intuition told me was urgent but that I would have normally rejected.

*
“Hello…”

“Is this Adam Coletta?”

“Speaking”

“Hello sir. I am one of the physicians at Sunnybrook Hospital and I understand that you left the emergency department before the blood work results had come back”

“Yes, I actually followed up with my family doctor who had the results of my INR earlier in the day and mentioned that it was likely the cause. I will follow-up on Tuesday”

“Actually sir, what we found was that you White Blood Count was nearly 8x greater than the normal range and I would recommend that you return to the emergency department immediately”

“Would you be able to translate that for me considering I’m currently pulling into my driveway which is an hour from the hospital but I can go to a local hospital if it’s urgent”

“Typically these cells are used to fight infection which could mean that you’re currently fighting a large virus. These results have also been linked to cancer

It is a surreal feeling to hear that you could, maybe, possibly have cancer over the phone and then to explain to your wife that you need to return after things were seemingly fine. I did because I had to and repeated the registration motions at yet another hospital. Here, my nonchalant attitude transformed into fear- fear of the unknown, fear of the blood result and what this would mean for my wife, my unborn baby and me. Throughout the course of the day my stress tachometer had been rising where I knew the worst case scenario would inevitably blow my mental engine.

As I waited for my fate, I felt as though this day was becoming a true test of my mental stamina. Maybe an unconventional way to realign my priorities moving into the next chapter in my life but that things were otherwise fine. So I waited and waited, unsure whether my preference was to face a devastating reality or stay peacefully ignorant to the issue at hand. Either way, time was up.

“Adam Coletta”, the nurse exclaimed and motioned for my wife and I to enter an empty and eerily quiet room. After a day of seeing doctors in scrubs, there is something quite unnerving about 2 doctors in professional work attire coming to speak to you – even more so when their body language tells you that they’re uncomfortable delivering the message.

And so it went something like this:

Medical jargon followed by the results of the recent blood draw support a diagnoses of Leukemia. Which kind? – I don’t know, how advanced, I’m not sure BUT I will consult with Princess Margaret and have you transported in the morning. I’m sorry.

In this moment, my worst fears became reality and my mind imploded thinking back to every bad news story, disease focused movie tragedy and personal cancer encounter I had in the past. The sting of the word was so intense that my breathe faded as I turned  to my wife to try and absorb the shock and get a sense of her understanding of the situation. Framing the diagnoses as a malignant cancer further electrified the air in the room as every hair stood on its end and our reality flipped upside down. This is the part where the doctor reassures you that they will do everything they can and leave you to your own devices in a quiet room to process the gravity that had already brought us to our knees. So we tried to process but quickly realized it to be an insurmountable feat given the enigma of the diagnoses.

With so many questions left unanswered, my mind spiraled out of control awaiting my transport to a cancer center which would now transform me into a cancer patient. Not quite the chrysalis to butterfly metamorphosis I was hoping for.

My instinct was to disassociate myself from the situation until I had answers or insights into my survivorship because I’m not going down without a fucken fight…

The course was now set for unchartered territory and I could only hope for a more specialized and  strategic oncologist at the helm.

Next stop – Princess Margaret Cancer Hospital.

Ripping off the Band-Aid

A mutilated BIG toe and congenital heart defect have made me no stranger to the wonders of modern day medicine. With the musculature and face of a Roman God, I’ve been told that this was the way that the universe had to reach equilibrium so have since come to terms with my bionic heart and WACK foot.

I’ve learned that in life there is little rhyme or reason for why things happen to people (however good or bad they believe themselves to be). Now, 5 years since my heart surgery- I can vividly remember the full range of emotions, from immersing myself in self-pity by declaring the injustice to the world to accepting my fate as one of Gods chosen “warriors”– a turbulent flight to destination X. Obviously, by virtue of this blog I was able to charge past this roadblock and had derived a sense of comfort from the trauma. Why? I was able to naively convince myself that this would be my one and only test of morbidity and that I had in some way paid my debt to the world and reset my karmic counter from adolescent “misconduct”…

If you’ve been able to follow the trail of breadcrumbs, you’ve realized that I’m likely in the midst of something new and presumably unwelcome. Doesn’t get more unwelcome than cancer – leukemia to be specific and Acute Lymphoblastic Leukemia to be exact (Band-Aid is now off). Today marks 30 days since my diagnoses and day 20 of subsequent induction treatment which I am now prepared to journal.

At the risk of sounding like a cliché survivor commercial, what hasn’t killed me, made me stronger and I expect that this will be true of this current earthquake tremor

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I will because I need to and I can because I’m meant to. En route to destination Y.