[This is part 2 of a two-part post. Here is part 1: Ten Words ]

“There must be more than three! What about a Top 10 list—you know, like David Letterman? How can there only be three lessons you learned from cancer?”

OK: like David Letterman, I too can create a Top 10 list of the things I learned from cancer. The first few delivered with a flourish, a drum roll, and a “ba-dum-bum” after each delivery. Here we go [cue drum roll]:

10)  If there’s blood in the toilet after you go to the bathroom, don't ignore it. See a doctor.

9) When prepping for a colonoscopy, remember that jell-o is considered a clear fluid, and that hot jell-o is better (and faster) than cold.

8) Before accepting assurances that it is “not really that bad,” ask your surgeon if HE or SHE has ever had a colonoscopy.

7) Beware of smiling radiation technologists with bags of barium solution.

6) While in the hospital, advise your visitors to refrain from bringing reptiles as gifts.

5) When recovering from surgery, beware of uproariously comical things and their hazardous effects on abdominal staples.

4) When entering hospital, pick out pyjamas before you’re admitted, or you’re going to be stuck with whatever your wife buys you.

Considering that each of these reflects an actual moment in my cancer journey, these points are not entirely irrelevant. However, it is in the remaining three points that the crux of my experience lies. These three lessons were foundational to my negotiating a healthy response to critical illness and to the underlying genetic syndrome that caused my disease. And they are, in my opinion, foundational to surviving critical and chronic circumstances in life. These three deserve a more thorough treatment than a mere enumerated statements can give.

First: I am not my disease. This tenet seems to strike a chord with all the friends I’ve spoken to who’ve also experienced critical or chronic illness—cancer, multiple sclerosis, Parkinson’s disease, and a host of other maladies. The same idea reverberates in conversations with those who’ve suffered critical life events such as divorce, job loss, drug use, or incarceration. The take-away is this: I am not the worst thing that has ever happened to me. Nor am I the worst thing I’ve ever done, for that matter, or even the best. I am these things, but no single event defines me.

Throughout the course of my cancer journey, I met many people who were tasked with helping me. The ones who did help—the heroes in my life—were the ones who approached me as a whole person: a person with hopes, dreams, and aspirations, with a life to live in the midst of disease and beyond. The villains were the ones who saw me as the personification of my disease: a problem to be fixed, one more job to be done. I learned from cancer that I have the right to caregivers who devise treatment plans and provide support based on who I am rather than simply on the ailment I have.

Second: in times of crisis, I need to embrace the community that is around me. As a male, I have a tendency to pull away from people when I have needs or hurts or when I experience failures. No doubt there are factors of personal temperament which contribute to that disposition; however, the fact that people usually nod and look knowingly at me when I say this suggests a commonality of experience. At any rate, I am one who is hesitant to say, “I am afraid”  or “I need help” or “I have no idea what to do next.”

That isolating factor is compounded by the fact that, when people encounter others with diseases like cancer, they tend to pull away. Not because they do not care or do not want to be helpful, but because they genuinely do not know what to do or say to someone who was fine yesterday, but today has cancer.

Nonetheless, I believe community is the single greatest resource that we have when dealing with cancer. And I can say with confidence that no one—not you, not me, not even Superman in his Fortress of Solitude—is better off alone in the midst of uncertainty and despair, pain and struggle, than in a community of those who love and support them. Of course, support means different things to different people, and the introverts among us may shudder at the prospect of constant or intrusive interaction, but I am not referring to always being with people; rather I am referring to there always being someone available for us. I learned from cancer that when I am at the end of my rope, when I lack the strength to go on, I need community to hold me up through my dark times.

Lastly, I need to embrace the fact that personal wholeness is more important than physical health. This I learned not only from my personal experience, but through watching a good friend die of pancreatic cancer. In the eight months between when he was diagnosed and when he died, I saw cancer take everything physical from him: his body and his mind. But through it all, there was something that the ravages of cancer could never touch: who he had become as a person, who he was as a husband, a father, a son, a brother, and a friend. I ached as I watched him die, but I marveled at how his personhood—the man he’d become through all the moments of his life, the healthy years and life-and-death struggle alike—was something that could never be taken from him.

I know that wholeness is an idea that means many things to many people. For some, it is a sense of personal integrity; for others it is being in right relationship with other people. For those who are religious, it is reconciliation with God. It is not my place here to tell you where truth lies, although I believe that it can be found if you look for it. What I will say is that we all have a length to our days, and when those days are up and we face our end, all we have left is who we have become. And it is in that “becoming” that we can find our wholeness.

I have learned a lot from cancer, and I’m sure it still has a lot to teach me. But these three lessons have become foundational to my life.

Dennis Maione is an author, speaker, and teacher from Winnipeg, Manitoba, Canada. He has been on a 20+ year journey through 2 bouts with colorectal cancer, in large part due to the presence of a Lynch Syndrome mutation in his genes. He speaks and writes about his cancer journey, his insights into the medical system, and finding heroes and villains in the unlikeliest of places.

His latest book, What I Learned from Cancer, is available in electronic form at his payhip.com site: http://bit.ly/wilfc-ebook. Physical copies of the book are available at the Prompters to Life web store, where shipping on copies of the soft cover edition is always free (except to the international space station). To order a paper copy of the book visit: http://prompterstolife.com/shoppers

An Encounter

I had been sitting there for an hour, maybe a bit longer. It was the first time I had ever done a book signing, and I was not really prepared for the people—or lack of people—I would encounter. Every time someone would near my table, I’d look up and smile; they’d see the book—some of them even mouthing the title to themselves— and then most would avert their eyes and walk away.

She was different. She picked up my book, looked at the title, and turned the volume over to read the blurbs about the content and author printed on the back. Then she put the book down, looked at me, and said, “So, what did you learn from cancer? Tell me in 10 words.” I was taken aback, suddenly feeling transported back to teenaged years, as though I were being interrogated by my parents after having come home too late on a school night. I looked back at her, squinted a bit, and peered into the air, at a spot just above and to the right of her head. The place I always looked for the answer to a question I had no idea how to respond to.

I paused just long enough to make her impatient. “Well?”

“Wait! Wait! I’m thinking. You gave me only 10 words: I have to make the most of them!” We both laughed.

I don’t remember the rest of the encounter. I cannot recall what I answered, nor do I even remember if she bought the book. What I do remember is the consequence: I spent the rest of my time there puzzling over the answer to her question. “What had I learned from cancer?” I asked myself over and over again.

You’d think that responding to that question would be pretty straightforward. After all, I had just written a book by that title. However, my writing process had evolved differently: it had never been that didactic, as if I'd been answering an exam question. Instead, I had formed a title and then moved on to craft the narrative of my experience. I figured I must have learned something from my intense encounters with cancer, and I figured that something must be buried in my story somewhere. So, if I told the story well, I reasoned, any reader would end up learning the same things I had learned. Oddly enough, I had never once wondered, “What happens if someone asks me what I learned?” With that woman’s startling question to me, I realized I needed to discover the answer.

While I have never been a sales professional, I have taken a number of sales courses. One of the lessons stuck particularly well: always have an elevator speech ready. That’s the succinct presentation you can give to someone whilst moving from one floor to another in an elevator. You make it clear,  impactful, and under a minute long. What had I learned from cancer?

The probing question first asked that day has since produced the core of everything I say about my experience of cancer. Every time I am asked to speak, regardless of the context, I hone in on the same key points. Whether engaged in an informal chat, preaching at a church, giving a workshop, presenting a keynote address, or doing a media interview, it is always these three points that are at the heart of my message.

So what did I learn from cancer?

First, I am not my disease and I will resist those who would treat me as though I am.

Second, community is more powerful than isolation and needs both to be fostered and held on to during times of crisis.

Finally, wholeness of person is more important than physical health and needs to be given the most prominent place of anything you can strive for in life.

While there are certainly other important things that I learned from cancer, these three lessons distill the essence of my experience and comprise the core of what I believe about all life circumstances, particularly those times of crisis in our lives. As a result, I share them whenever I can.

Epilogue

A couple of months after my initial encounter with a book browser anxious to have me tell her what I learned from cancer, I sat at another book store. By then I had long formed and held the key lessons learned firmly in my mind, and I had  had seemingly countless occasions to speak them out. Nevertheless, the inquisitor’s challenge remained: could I answer her question in ten words? And so, pulling out a pen and piece of paper, I began to write down my ideas. It took a bit of time, but I eventually got my message captured in not just ten words, but six.

[This is part 1 of a two-part post. Here is part 2: Tripod]

Dennis Maione is an author, speaker, and teacher from Winnipeg, Manitoba, Canada. He has been on a 20+ year journey through 2 bouts with colo-rectal cancer, in large part due to the presence of a Lynch Syndrome mutation in his genes. He speaks and writes about his cancer journey, his insights into the medical system, and finding heroes and villains in the unlikeliest of places.

His latest book, What I Learned from Cancer, is available in electronic form at his payhip.com site: http://bit.ly/wilfc-ebook. Physical copies of the book are available at the Prompters to Life web store, where shipping on copies of the soft cover edition is always free (except to the international space station). To order a paper copy of the book visit: http://prompterstolife.com/shoppers

I had a brief conversation with an English teacher today. When I told him how much I liked sitting in on the tail end of his International baccalaureate (IB) English course and how it made me want to teach my memoir writing workshop to them he said, "There is no place in the IB curriculum for creative writing." He, sadly, does not have the luxury of teaching creative writing because of the overwhelming expectations of the curriculum.

I thought back to my University English course as well and realized that there was no place for creative writing there either.

And then I thought back to all the years I took Greek (Classical and Hellenistic ... 800BC to 200AD) and how we really could only focus on reading because dead languages are exceedingly difficult to do composition with.

And then it hit me: we teach "advanced" English as though it were a dead language. We have divided the world into three kinds of people (as far as the English language composition goes): writers, readers, and those who do neither.

And I realized that culturally we have lost something, although I do not know how long ago it was lost. We have lost the ability to write stories and we have failed to foster that ability. We treat stories as though they are to be created either by children, coloured in with crayons in elementary school, or by professionals, the ones to whom we look to fulfill the writing task.

But if we are going to be a literate people, a people who think and feel and express themselves, we must not only read but we must write.

I have oft looked down on the bloggers, especially those whose vapid opinions are not worthy of expression, at least in my arrogant mind. But they are, perhaps, the germ of a writing culture, one that all of us need to embrace. For at that moment that we put pen to paper or fingers to keyboards we are transformed, transformed into writers, if only for a short while. And that benefits us all.

I looked through my family records today. The documents that prove somewhere in the past there were people whose remnants of DNA I carry. My past, my family. I trace my finger up the family tree: Albert, my father, Francesco, my grandfather, Pietro, my great-grandfather. But connected to Pietro are two lines, one solid and one dotted. The solid to a shadowy woman whom I do not know, that I never met, and who, in the recounting of family tales, I heard spoken of only once in hushed tones. There is a solid line between her and Pietro: she is Vittoria Amandala, my great-grandfather’s first, and only, wife.

Vittoria Amandala, born in 1874 in the town of Antilia, was the daughter of Serafina Amandala and a father unknown. To be sure, not an auspicious beginning because an unwed mother—which Serafina doubtless was—would have been considered a whore. Only a whore would get pregnant and have a child without the protection and companionship of a husband. Vittoria Amandala, daughter of a whore.

But in 1899, Vittoria married a man named Pietro Maione. A common labourer, Pietro would not be able to give her a comfortable life, but they could be together and raise a family. This, amidst the rising turmoil in Italy at the end of the 19th century, would be the prospect ahead of them for the years to come.

And joy would have arisen in Vittoria as she discovered in January of 1900 that she was pregnant. She would later give birth on September 5th of that year to a healthy and happy daughter, Maria Rosina Maione. But by then, her joy would have evaporated. For in May of 1900, Pietro had left.

There are no stories about the leaving, no tales of how or why he left; all anyone knows is that one day, he did leave. Walking cross-country, Pietro escaped the poverty and uncertainty of Italy and boarded a ship in Naples destined for the United States of America. And, once again, Vittoria, daughter of the whore, was alone, but this time with a baby on the way.

Maria Rosina Maione would be born, live, and die. And, perhaps on her wedding certificate may have been written the words “father unknown.” Maria Rosina Maione, daughter of a woman abandoned, of a mother as alone as her grandmother.

My family tree includes a small branch, Vittoria Amandala and Maria Rosina Maione. They are connected by a solid line to my great-grandfather. The irony of all of this is that the woman whose name does show up in the great-grandmother slot next to Pietro in my family tree is there due to a dotted line, for the two were never married. While it is possible that Vittoria was able to get her marriage to Pietro annulled, which would have been required in order for her to have married a second time, there is no record of that in my family because she is not really a part of our tree; she has become an afterthought. Vittoria shows up only as the “first wife of” Pietro Maione. But, given the legalities of the situation, she should show up as “the one and only wife of” Pietro Maione.

We quite easily make determinations about heroes and villains in our personal stories, often based on convenience and pragmatism, on our comfort levels. We see our lives through our own lenses, embracing those whom we’d embrace and rejecting those whom we’d reject sometimes for no reason other than that they, in the mist of time, have a familial connection to us. And such is the effect of our personal stake in the matter that the farther back in time we go, the more willing we are to embrace the villains as essential parts of our stories.

I cannot truly judge my great-grandfather, for I did not know him nor did I know his story. But, if I were to label him based on what I do know he did, at least in the beginning, I would with ambivalent hand place “villain” on his picture.

But, I have seen redemption. I have seen redemption in my life and in the lives of those around me. I have seen redemption in the lives of my family members. I have seen many individuals  overcome what they should have been to become something better. And I can, perhaps presumptuously, over the span of the years, hold out a hand of grace to Pietro for this thing that he did.

We are bastards, all of us. For the woman who is my great-grandmother was not married to my great-grandfather and, therefore, were we royalty, we would have no claim to the throne. That claim would fall to the descendants of an unknown (to me) woman named Maria Rosina Maione. The daughter of a woman who through no choice of her own carried on the label which her mother bore. And I wonder what became of her, Maria Rosina Maione, twice daughter of a whore. I do not know, but I have to believe that, having Maione blood in her veins, she could not help but rise above the path that her life was set on to become something more.

Happy Anniversary, Baby
Got you on my mind.

Happy Anniversary, Little River Band

Beware of looking, because if you look, you just might find something you do not like.

I was talking with a friend the other day. He said that he made a trip to Germany to see the places of his ancestors. He discovered that his grandfather was a soldier in Hitler's army. And he remarked, with much emotion, "I am embarrassed to be associated with him."

It is often with mixed emotions that we discover and then learn to embrace a villain in the family. It seems that the farther back in time that you go, the less problematic such a discovery is, but still, who would want to find out that Adolph Hitler or Pol Pot or Joseph Stalin falls amidst the ranks of your family?

Mixed emotions? Well, sure, who isn't just a bit titillated to think that there is a notorious villain in the family? Sure, no one wants Hitler, but to say that my great-great-great-great-great-great-great-great Grandfather was Ghengis Khan? How cool would that be?

Today is the death-versary of Harry "Happy" Maione.

Harry did not come to a happy end. He did not die quietly in his sleep, a kindly old man. He did not cross over to the great beyond full of years and surrounded by his family. Well, it is possible that he was surrounded by his family at his death but not in a venue conducive to warm feelings. Instead, at 2:00am on February 19th, 1940, having been strapped into a chair, electricity was passed through Harry's body until he was declared dead. And with that, Harry had his final distinction: he was the first mobster to be executed in the state of New York by electric chair.

By all accounts, Harry Maione was a bad guy. Not just a bad guy, he was a monster. Harry was a contract killer, a man whose rose up in the ranks of the underworld to become a prominent part of an organization called Murder Inc. the assassination arm of the National Crime Syndicate. His final mistake: he was ratted out by a compatriot for killing George Rudnik, an execution that involved stabbing him 63 times with an ice pick with a meat cleaver to the head, just to complete the task.

But somewhere, somehow, Harry Maione is part of my family tree. The Maione historians are not quite clear where Harry fits. We think that he is connected to the tree via one of my great great aunts, but that is not really certain. However, with the Maione surname, we can be sure that he is attached somewhere.

And that brings this story back to me. What am I to think of this character? I am not particularly moved by his story nor do I feel any lingering guilt over his connection to my branch of the family tree. But, there he sits, staring back at me. Daring me, perhaps, to figure out what his presence there means. And, perhaps, there is no meaning, just a random guy, a branch that came to a bad end. Or, maybe something else, one more story of redemption and the subversion of destiny.

I don’t know much about Gaetano Maione. Family trees are so flat and two dimensional, just lines and boxes and names of the long forgotten with a date or two. What I do know I can relay in a few sentences, but these are facts: no emotion, no experience, no fire. I know that Gaetano was born in rural Italy in about 1770. His father: a farmer, a soldier, a politician, a criminal? If the lineage is any indication, he was born in the town of Altilia in the province of Cosenza in the region of Calabria in Southern Italy, near the tip of the boot. On the modern map this town is right next to another town, a small one called Maione. It is impossible to know whether the surname was obtained from the town or whether the town got its name from our family. I expect the former is the case, but perhaps farther back in time we rode in, took over the place, and stamped our family crest onto the town hall.

Gaetano is my great-great-great-great grandfather. So that means that some of his DNA is still a part of mine. Not much, mind you, for there are 64 people who contributed DNA at that level of my ancestry, but there is a little bit of him in me.

My decision to embark on this story came from a question that I stumbled upon while musing about destiny and DNA and the influence of the past on the present. The question is not new, psychologists have been asking the question about genetics vs. environment on the construction of the personality and of a person’s life. I think the question has been batted about enough, by now, to know that it really does not have an answer. We know that our predispositions are often created by our genetics and then the manifestations are guided by our environment.

On my mother’s side I know the effect of genetics. I carry a mutated gene, MSH2 exon 15 G2575T, and it has produced significant effects in my maternal line. Effects: that is a pretty benign word to describe the havoc that is wreaked on a family by a mutation which predisposes any carrier to a 60-80% chance of colorectal cancer. That one is straight-forward and obvious in its manifestation. There is no question of the effect of genetics.

On my dad’s side, things are more complicated. Yes, just like with my mom’s family tree I can trace patterns on my dad’s side. But the effects are not easy to see, not like tumours and cancer. They are soft, soft like divorce and a tendency to drink too much.

As I grow older and my personality has solidified around the probably unchanging core that is me, I have been able to stand outside of myself and look at what, or who, I have become. Sometimes the observations I make are concerning. And I have, on more than one occasion remarked how much like my dad I see myself become. But, I am not my dad, I am someone else.

And now I look back to the age-old question: are we a product of our genetics or our environment? But I rephrase that in a way that is, perhaps, a bit more dramatic; am I destined to become who I am or can I become someone else?

And so I look back to Gaetano because I want to know him. I want to know him and his wife Littera Greco. I want to know his son Salvatore and his son Giovanni and his son Pietro and his son Francesco and his son Albert. I want to know these men because, in the end I want to know Albert’s son Dennis. And, perhaps in knowing myself I can ensure that I never become who my genetics destined me to to be and so that I can teach the sons of Dennis how to be their own men.

“Where are the nurses?” was the question that came from the back of the room after I finished my talk. It was the end of the first launch of my book What I Learned from Cancer and after telling stories and reading selected passages from my book, I asked the audience for questions.

I was unprepared for that question and so it caused me pause. And it got me thinking about the other heroes in my story, the unseen heroes.

When I advertise talks about my cancer journey I speak of “heroes and villains in the unlikeliest of places.” And most, but not all, of the heroes are doctors. Understandably, the doctor looms large in any medical story. There they stand in the centre of things, high on a pedestal from where they can see everything and from where everyone can see them: a lot like the statue of Jesus overlooking Rio de Janeiro, they survey the territory of patient health. I think that view of doctors is what gets them, and us, in so much trouble. It can foster an arrogant “I know what is best” attitude and, when medical or relational decisions turn out poorly, it can also create a great place for the rest of us to see their failure.

And so, having finished telling my story she raised her hand and from the back of the room asked about the people who must have been there but went unmentioned in my narrative: “Where are the nurses in your story?”

Nurses are like sound men at rock concerts: there they are to ensure that all goes smoothly, there they are to ensure that the “stars” get their message out, there they are making the performers look good. But you never see them and despite being indispensable they go largely unnoticed. It is not until the feedback begins or the vocals are not loud enough or the guitar solo makes your ears bleed that you look back into the shadows and ask “What is that guy doing back there?”

But when I was in pain in the middle of the night, it was not a doctor who came to my side. When I vomited black bile all over myself and my bedding, it was not a doctor who came to clean me up. And when I lay in my own waste, on more than one occasion, because I could not get to the toilet in time, once again, it was not a doctor who cleaned me up. It was a nurse who, without a word of complaint, changed my bedding, wiped my back side, and put me into my bed, only to be called to return 10 minutes later to repeat the process again.

They took my vital signs, gave me drugs, changed my IV, calmed my nerves, heard me cry (in despair and pain), and came running whenever I pressed that magic button beside my bed. They encouraged me in the middle of the night, and pushed me just hard enough to know that I really could do that thing I needed to do to speed my recovery. These were my nurses.

I know nurses. I’d love to be able to describe them stereotypically as the angels who come to your bedside. But I can’t, mostly because at least half of the nurses I know are guys, and none of them are angels. And I am not sure that the metaphor of the angel fits. Instead, I see them as servants. And, lest you get the wrong impression, I am not talking about slaves, I am talking about those who choose a life of helping, who choose to place others before themselves, who choose to be the ones to whom very little credit is given. These are the ones who, in their humility, make our medical system function.

To all the nurses I know, to all who have served me though my illnesses, to all who appear out of the shadows and disappear into those same shadows when the healing is done, I offer my thanks. And know that we, your patients, appreciate you and what you do far more profoundly and deeply than we can ever express.

Dennis Maione is an author, speaker, and teacher from Winnipeg, Manitoba, Canada. He has been on a 20+ year journey through 2 bouts with colo-rectal cancer, in large part due to the presence of a Lynch Syndrome mutation in his genes. He speaks and writes about his cancer journey, his insights into the medical system, and finding heroes and villains in the unlikeliest of places.

His latest book, What I Learned from Cancer, is available in electronic form at his payhip.com site: http://bit.ly/wilfc-ebook. Physical copies of the book are available at the Prompters to Life web store, where shipping on copies of the soft cover edition is always free (except to the international space station). To order a paper copy of the book visit: http://prompterstolife.com/shoppers

When I was in high school, my father gave me his 1969 VW Beetle. Despite its age and the toll that time had taken, it was a great car. I especially loved it for its simplicity. Throughout my relationship with it, I rebuilt the engine twice, both times stripping it down to washers and bolts and then putting it back together, good as new, some of the parts cleaned up, some refurbished, and others discarded and replaced with brand new parts. Each time I put the engine together again, you’d never have guessed that a week earlier its parts had been strewn about my driveway in a disarray no one would have recognized as a car engine.

My body, however, is different. It wasn't designed to be taken apart, and there really are no parts that you can simply take out and replace—not “as good as new,” anyway. Each time I’ve been taken apart and laid out on an operating table with my bolts and washers all over the place, my surgeon cleaned me up, took out the broken bits, and then did his best to put me together again, as good as new. But each time, the process was more complex than with my Beetle. Each time, there were consequences to the action, and I was never again the same. Despite the skill of my surgeon, there were scars.

Scars: some were visible, like the permanent zipper on my abdomen, spoiling the potential for the perfect abs I’d always dreamed I’d develop some day. Other scars were deeper inside, scar tissue that invaded my body at its core. And, of course, there were psychological scars, which came from the trauma of the incident, the long shadow of death, and the realization that something had been taken from me which I’d never get back. Some of those emotional scars are still present, although not really evident until poked at by a mind trying to remember.

I recall sitting in a Starbucks as I put the finishing touches on my book, What I Learned from Cancer, sifting through medical records and remembering. I did a brief calculation about the spans of time in my cancer treatment and recovery, and I wrote this:

It had been 15 years, 3 months, and 14 days since cancer had been removed from my body. 5,584 days since my abdomen had been violated by the cut of a scalpel searching for the villain amidst the blood. And on that day, the sign reading, “5,584 days cancer-free,” came down and was replaced with one reading, “This body is out of order, again.”

And what was remarkable about the writing was that, 7 years after the incident it described, it drew tears. I sat at my table in the corner of Starbucks for half an hour, and I cried. I cried because that scar—the one I had not even known was there—hurt when I moved a certain way, and because, for a while, that pain would not subside.