“Is it safe?” There are many scenarios where you might ask this question. Standing at base camp on Mount Everest and shielding your eyes from the sun, you turn to your Sherpa guide and ask, “Is it safe?” Or you sit down on the huge wooden rollercoaster at Six Flags Chicago and look up apprehensively at the teenager who has just fastened your safety harness, asking, “Is it safe?” You visit Africa and, while driving across the savannah in an open-top jeep, you spot a pride of lions and ask, “Is it safe?”

This question surfaces instinctively when we face situations where the possibility of danger is real and apparent. Climbing mountains, riding 100-year-old rollercoasters, and coming face-to-face with wild cats are activities fraught with danger: knowing that, we will have taken precautions. But we will also query the reliability of mitigation actions of those in charge, the ones we deem responsible, and ask them, “Is it safe?—generally assuming that the answer will be “Yes, of course it’s safe.”

But rarely do we walk into a hospital or a doctor’s office and ask that question. Of course, a hospital is safe. Of course, we are safe if we put our lives into the hands of a doctor, or entrust them to a system designed to guard our health and make us well. Of course.

Unfortunately, however, and with shocking frequency, the answer to this rarely-asked question is too often, “No.” No, this place is not safe. No, this place is filled with people, driven by systems, and fuelled by processes that make the environment inherently unsafe for many of those people who enter so trustingly: the patients.

Let me pause. “Yes, I see that hand in the back. Your question, sir?”

“What do you mean, hospitals aren’t safe? Do you mean hazards such as water on the floor and electrical cables hanging from the ceiling?”

No, I’m not talking about that kind of danger. Not the kind you’d find on manufacturing floors with whirling blades or on construction sites with bricks falling from the sky and giant machines racing about bent on squashing you. Nevertheless, I’m talking about danger just as real—although lurking largely unseen—with implications for safety every bit as real.

I am talking about real danger, but it is often a danger hidden behind systems and screened by our lowered expectations. You see, in a place like a construction site, if someone dies or sustains serious injury, people take notice. No one can see a worker at the bottom of a hole with a piece of rebar sticking in his side and just say, “Oh, that’s a shame, but, after all, these things happen.” Instead, people take action, first to rescue the man and then to ensure that this never happens again. In fact, if remedial action isn't taken, the site will likely be shut down and the construction company in for some serious trouble.

But what happens if something unsafe happens in a hospital? Something like failure to wash hands, spreading some dread bacteria from nurse to orderly to patient. And what if this dread bacteria turns a patient who is on the mend from surgery into a patient fighting for her life because of an infection? That kind of environment is unsafe. But this lack of safety often goes undetected in the midst of expected results. Environmental camouflage disguises the lack of safety.

Hospitals are places where sick people go, places where dying people often end up. One might wonder, “How are we to tell the difference between people running through the natural course of the end of their lives and those who are artificially hastened along their way through bad process, uninformed decisions, or negligence?”

On the day that I write this, a young man from Winnipeg is fighting for his life. He is in intensive care and on life support because of complications due to a wisdom tooth extraction. “People get complications,” you might remark, “so why is this a special case?” It is special because his complications are the result of someone on his medical care team making an error: the patient did not get a post-surgical prescription for antibiotics along with the prescription for pain killers that he did indeed receive. Because of that, he got an infection, one which went untreated because no one knew to look for it. The original error was compounded by subsequent actions—or lack of action—based on the assumption of a safe environment. The young man and his caregivers expected him to be safe in the hands of his medical team, but someone—perhaps many—let him down. At this time no investigative results have been made public, so not all the facts are apparent. The sources of error remain to be seen, but what we do know is that the patient who expected to be safe in the wake of a major but routine operation is now at risk of dying.

Of course, not all doctors make these kinds of mistakes. And not all hospitals foster environments which allow mistakes to happen and then compound themselves. Nor do all allow such disturbing issues to be glibly dismissed as one of those “things that just happen.” However, while I’d love to say this is an isolated case and events of this magnitude rarely happen, that is simply not true. In 2013 alone, one-half million people died in hospitals in North America from medical errors: half a MILLION! And that is only the people who died. There are countless others, perhaps millions, who have suffered permanent harm—physical, psychological, or both—from errors that happened in hospitals at the hands of people they trusted to provide them with medical care.

Hospitals should be safe places. Safe places for those who are sick to be admitted and get well. Safe places for people who are dying to receive quality palliative care. Safe places for the elderly to receive care for critical issues even while their bodies, overall, are failing them over time. Tragically, for far too many people, this is not the case.

What can we do? Well, to start, we need to demand transparency from our healthcare providers: from doctors and hospital administrators. We need to ensure that legislators are requiring full disclosure of errors and demanding good plans to ensure that system errors get fixed.

We also need to demand that doctors and other caregivers acknowledge what we already know: that they are not infallible and that they make mistakes. It is simply arrogant to believe and say anything other than this. Assuming responsibility for error and making apologies are critically necessary.

But we must not simply focus on those people who need more humility and institutions that are in need of improvement; we must also find ways to celebrate the places and people who are already doing it right. Let’s acknowledge the medical professionals who practice safety and transparency and model that to others, the administrators and policy makers who put patient safety high up on their priority lists when implementing change. Because, in the end, it is not legislation alone, nor just promises to change, that will make places safe. Widespread safety first requires that people and institutions actually change; then, that they model those changes to other institutions and medical personnel, including those in training.

I was recently at a patient safety meeting where Martin Hatlie, CEO of Project Patient Care, described a process one American hospital had put into place for dealing with errors in patient care:

1) Within 30 minutes of an error, it is reported.
2) Within 30 minutes of report of error, medical and hospital personnel are meeting with the patient and/or her family to admit an error has occurred.

The results will pleasantly surprise you. Not only did these simple steps (representing but one of many progressive initiatives implemented at this hospital) increase the level of trust that patients had in their caregivers, but it also decreased the number and size of lawsuits. Furthermore, it allowed this hospital to offer more to patients in compensation (financial or otherwise) than they had even asked for.

Why? Well, first, people are less likely to sue an agent who has been upfront about harm that has happened and who has admitted possible culpability. Second, subsequent steps in this hospital’s initiative had the hospital offer to make good to the patient and family if the hospital was determined to be at fault, which meant that lawsuits and lawyers were bypassed. This avoided the huge take previously going to lawyers who were helping to settle—no less than 65% of total costs. Wow! And all of this simply because, within an hour of an error, someone from the hospital was meeting with the family and saying, “Something happened, and although we do not yet know what the implications are or who is at fault, your father/mother/brother/sister/son/daughter has been harmed. We want you to know about it, and we want to involve you in the process of making it right.”

Every patient deserves to be safe. EVERY patient. Let’s start telling each other the truth in healthcare and see if we can’t do better in future than we are doing now—because half a million dead each year is far too many.

Dennis Maione is an author, speaker, and teacher from Winnipeg, Manitoba, Canada. He has been on a 20+ year journey through two bouts of colorectal cancer caused by due a Lynch syndrome mutation in his genes. He speaks and writes about many things, including his cancer journey, his insights into the medical system, and finding heroes and villains in the unlikeliest of places. He regularly blogs at http://www.dennismaione.com/blog.

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 softcover 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. In some cases it was too simple: the air-cooled engine that was supposed to supply heat to the rest of the car but never seemed to be sufficient for cold Saskatoon winters—I always had an ice-scraper at hand in the winter to clear a goggle-sized place on the windshield as I drove—and the Blaupunkt radio that only got one channel. But there were advantages to the simple nature of the car. While my friends were renting engine hoists to remove the big-block engines from their Chevys, the engine in my beetle was easily removed by loosening the four bolts that attached it to the transmission housing, lowering it to the ground with a floor jack (about 10 cm), and then having 4 friends pick up the back end of the car and lift it over the engine.

Throughout my relationship with my Beetle 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.

The Japanese have an art form called kintsugi, a word which literally means “golden joinery,” and a technique which, for centuries, has been used to repair broken ceramics. Like the human body, pottery cannot be put together “as good as new” once it has been broken; the cracks will always remain. But in kintsugi, gold is mixed with the bonding material, creating a glue which not only repairs the piece back to its original function but also celebrates the repair. The cracks become the beauty in an otherwise ordinary piece.

Every nick, every cut, be it shallow or deep, invisible or substantial, each represents a change in me, a mark in my history. Each is a story, a part of the narrative of my life. With each scar I get to choose, whether to see it as something ugly which mars an otherwise pristine surface or to imagine it as revealing my true golden self beneath, a self born of trauma and turmoil and heartache. And while I am tempted to hide these scars, these imperfections, I refuse to do so. They are, for me, evidence of a life lived. Evidence that I was here and that I would not walk away without a fight.

I have had cancer twice and it has been ten years since the last incision began to turn to a scar. My body will never—can never—again be “as good as new.” Cancer and surgery have made sure of that. But I celebrate my repair. I can look at my scars and celebrate my recovery from crisis as well as all that the journey has made and will continue to make of me. I can show off my golden joinery and believe that somewhere in the breaking, I have become something even better than new.

Dennis Maione is an author, speaker, and teacher from Winnipeg, Manitoba, Canada. He has been on a 20+ year journey through two bouts with colorectal cancer, in large part due to the presence of a Lynch syndrome mutation in his genes. He speaks and writes about many things, including his cancer journey, his insights into the medical system, and finding heroes and villains in the unlikeliest of places. He regularly blogs at http://www.dennismaione.com/blog.

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 softcover edition is always free (except to the International Space Station). To order a paper copy of the book, visit: http://prompterstolife.com/shoppers

On May 13th, 2015, Dr. David Sackett died. If you haven’t heard of him, I'm not surprised: many pioneers are unrecognized or soon forgotten, especially those associated with ideas and foundational thinking rather than cures or objects. Nonetheless, according to the website of McMaster University, David Sackett was widely regarded as the father of evidence-based medicine.

Evidence-based medicine is the idea that how we treat patients, how aggressively we pursue certain courses of medical action, and how we rank the use of specific drugs and techniques ought to be based on science and not on feeling or arcane knowledge. Evidence-based medicine is what caused us to abandon wide scale blood-letting and routine trephination (the practice of drilling holes in people’s skulls) in medical treatment: science says that these things don’t work, or at least not for most people in most circumstances.

We want to believe that we, as enlightened 21st century people, have moved past ill-informed or superstitious practices. When we see things which are obviously based on superstition and the remnants of animism and spiritism (like sacrificing chickens in hotel atriums and anointing the doorways of patient rooms with the resulting blood), we look askance at the practitioners, and then call the police.

But I propose that we are not really as enlightened as we suppose we are. For instance, we think nothing of Wayne Gretzky’s insistence on tucking one side of his jersey into his pants. We do not blink at playoff beards or lucky ties. And we rarely question whether a certain medical treatment has been scientifically proven efficacious in the situations when it’s prescribed.

Yet, it is a fact that some standard treatments are known to be ineffective but are still pursued on a regular basis.

You don’t believe me. Let me give you two examples.

We’ll start with something relatively benign: antibiotics. Antibiotics have been the salvation of many people and contributed to a great reduction in overall mortality. That’s because they are the cure for bacterial infections that often led to sepsis and death in the past. But antibiotics are not the cure for all that ails us. According to the website of the Mayo Clinic, antibiotics are highly overprescribed. They are prescribed for sore throats of all kinds, for colds, for influenza, and for stomach problems. However, unless you have bacterial pneumonia, tuberculosis, or strep throat—a disease caused by a bacterium called Streptococcus pyogenes—taking antibiotics is at best ineffective. At worst, it actually promotes antibiotic-resistant strains of bacteria.

So, if antibiotics are not effective for treating many of the ailments they are prescribed for, why are they prescribed? There are many reasons, but a prime one is patient expectation and satisfaction. Most often, patients go to a doctor to get problems fixed. They expect the doctor to do something to make them better. But many times the doctor can do nothing to help; patients must simply wait and get better on their own. However, that is often unsatisfactory to the patient, who becomes insistent that the doctor “do something”. So, the doctor does something: she prescribes antibiotics. Knowing that what the patient really needs is just good nutrition, rest, and time to get better, the doctor prescribes a week of antibiotics and, voilà, after that week the patient is better—no thanks to the doctor or to the antibiotics. And so the cycle continues, with the illusory efficacy of the treatment being seen as evidence of its success, and the patient’s reliance on antibiotics increasing. And, to make things easier on her end, the doctor begins to prescribe antibiotics as a matter of course, even if the patient does not ask, simply because it is expected and because the doctor can avoid long talks to explain the fact that there is little that can be done beyond nutrition, hydration, rest, and patience.

That makes doctors look bad, doesn’t it? Well, it’s not intended to. It’s simply to illustrate that, like many other people, doctors want to avoid confrontation, to have people feel satisfied with their services, and to take the path of least resistance. After all, patients can otherwise simply move on down the road to find a doctor who will give them what they expect.

Even though evidence gained through double-blind scientific study shows that this course of action is not recommended and can ultimately be dangerous, we (doctors and patients both) insist on it. That is not evidence-based medicine; it is convenience and wishful thinking.

So, let’s say that, using the above example, I have convinced you of our unscientific practice of medicine. Let’s move on to something much more emotionally charged, with seemingly much more at stake: chemotherapy. We know from clinical double-blind trials that chemotherapy works; that is, chemotherapy treatments have been shown to kill cancer cells and to shrink tumours. That is science and is reproducible both in the lab and in actual patients. But, we also know from clinical double-blind trials that chemotherapy does not work; that is, there are many circumstances under which chemotherapy is simply ineffective to remove or stop cancer. That is also science. And, to make matters just that much more complicated, we know that chemotherapy sometimes works but at a cost which is greater than the gains it produces. That is, while it kills cancer cells, it can hasten death and/or cause the life which it does extend to be intolerable to the patient.

Unfortunately, today's cancer treatments are sometimes feelings-based. I cannot count the number of times I have heard or read statements like, “My cancer was surgically removed, and the oncologist said the chance my cancer will recur is only 5%, but I chose chemo anyway because I need to know I did everything I could to beat this disease”. As a result, the oncologists prescribe long weeks of chemotherapy. There are other scenarios. Some oncologists, desiring to be “as aggressive as possible” against the hated cancer, prescribe chemotherapy even where the evidence shows clearly—or with significant weight—that chemotherapy is contra-indicated, often telling the patients that a significant factor in their decision to prescribe is the overall good health and age of the patient. I was told I’d “be able to tolerate it well”. When I asked the oncologist to address the medical research indicating I would not be helped—and perhaps even be harmed—by the chemo being prescribed, he told me it was irrelevant. I had to battle to get a second opinion, which confirmed that chemo was not indicated for my condition.

I get the psychology of this. I understand the patient’s fear that comes with a doctor’s pronouncement that a cancer is “probably gone”, and the nervousness that looks to chemo for greater assurance. But where is the evidence-based medicine? Where are the doctors arguing that chemotherapy, in many cases, is the wrong course of action? I fear that, in the best case, the doctor’s strident argument against chemotherapy is absent because the appearance of doing something for the patient is better than the appearance of doing nothing. It is even possible that there is a more disturbing reason, having to do with how doctors are compensated for their work: it is not efficient, either in terms of money or time, to spend appointment after appointment trying to convince a patient not to have treatment—treatment which the doctor will be paid for. And if these rather raw, cynical explanations are not in play, it is sadly true that doctors are simply not trained to try to convince patients that things are going to be okay without further treatment, nor are they psychologically prepared to deal with their own misgivings over not having prescribed chemotherapy when a cancer reasserts itself.

Evidence shows that sometimes doing nothing is at least as good as doing something, and sometimes it is even better. Evidence shows that quality of life is often a more important consideration to the patient than quantity. It also shows that a satisfying quality of life can itself often lead to an increased quantity of life—without the chemotherapy or medical interventions which would have only decreased the patient’s quality of life.

So, let’s begin to listen to the evidence, to our better judgements, and perhaps to our own mortality. And maybe we can begin to live better lives.

Dennis Maione is an author, speaker, and teacher from Winnipeg, Manitoba, Canada. He has been on a 20+ year journey through two 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 softcover edition is always free (except to the International Space Station). To order a paper copy of the book, visit: http://prompterstolife.com/shoppers

Amidst the swirl of the events over nine days of volunteering at the Women’s World Cup 2015, I struggle to find the highlight: the event, person, or happening that was the single most impressive thing. Of course, there were the myriad behind-the-scenes workers: FIFA employees, contractors, production people from a variety of broadcasters and media outlets from around the world, and the volunteers, hundreds of volunteers. The World Cup is a huge machine, one that gets assembled and then tinkered with every day.

There were the teams, each one with its unique personality. I had the privilege of seeing 10 teams play in Winnipeg: Nigeria, USA, Australia, Sweden, Thailand, Germany, China, New Zealand, Japan, and Ecuador. I often mused that teams would share the standard criteria for membership common to all World Cup teams, but that there also would be certain qualifications unique to each team. Having seen the Nigerian team dance and sing their way off of their bus on the first day they played, I can imagine that the interview for their team went something like this:

“Are you Nigerian?”

“Yes, I am.”

“Are you a woman?”

“I am that as well.”

“Are you an elite player? That is, are you really really good at soccer?”

“Why, yes, as a matter of fact, I excel at soccer.”

“That is all excellent. One more question: do you sing?”

“Sing? What kind of question is that?”

“Well, this is our team-specific qualification. You see, if you cannot sing, we might have to take a second look at your qualifications to be on the team. There may still be a way for you to play, but you would have to exhibit exceptionally strong playing skills if you cannot sing. In fact, without singing, you will have to be really, really, REALLY good in order to play for our team. After all, we’ll need some skill to replace your lack of singing.”

“I see. Well, yes, I can sing.”

“Very good, you are in! Welcome to team Nigeria.”

***

Every day when I arrived at the volunteer centre to check in, I was greeted with “Here’s the guy with the best seat in the house.” Gentle ribbing, to be sure, but tinged with truth and just a wee bit of jealousy. I had a great job. As one of only two broadcast media volunteers, I was the personal assistant to the Broadcast Liaison and Information Manager for the Winnipeg World Cup venue. My boss saw to it that all the video broadcasters had places to set up cameras, were given access to the players for interviews, and had general access to all the important goings-on. As for me, I stood next to her most of the time and jumped when I was told to jump. For fourteen-hour days. During the actual matches, however, my usefulness to her was limited. So, I mostly stood on the pitch next to the photographers and just watched the games. During those times, my standard location was at the corner of the pitch between the photographers and the chute where the players entered and exited the field of play from their dressing rooms, about two metres back of the goal line and at the sideline where, further down the field, the team benches were. I could have stood right behind the goal had I wanted to but that felt too conspicuous to me, so I positioned myself at the side instead. In this spot, I was close enough to get an excellent view of players during corner kicks. I could see the sweat, hear the conversations with other players and the refs, and hear the thud of foot on ball when it was kicked. From this vantage point I also got a front-row view of the teams entering and exiting the field: for warm-up, game-time, half-time, and at the end of the matches. I saw everyone come and go.

***

In 2007, a group of three rabid soccer fans from Lincoln, Nebraska formed a group dedicated to the support of men’s and women’s soccer teams in the United States. Today, the American Outlaws has chapters all over the United States with thousands of members. I think that they all showed up in Winnipeg to see the American women play their two games during the group stage. For those games, the house was full, attendance ringing in at just over 32,000 for both games. Given the flags and the noise, I have to estimate that 25,000 were American fans, and I think the majority of those travelled from across the border to attend the games. And did they ever put the “fan” back in fanatic. They chanted, they bellowed, and they sang from the American Outlaws song book. They carried huge pictures of the faces of their favourite players: like disembodied heads floating above their supporters. They cheered for their players, yelled when the calls did not go their way, and jeered, mostly in a good-natured way, at the players from other teams.

***

Today I saw the highlight reel that FIFA posted of the most impressive moments in the group stage of the tournament. It shows goals and saves and fabulous soccer plays. But my personal highlight was not there. What was my highlight? Nilla Fischer and Olivia Schough from the Swedish team. They are superstars, to be sure, and were involved in their share of impressive plays in the games that Sweden played. But those were not the reasons I was impressed. ...first, however, let me digress.

***

Soccer is a hard sport: I have experienced this first-hand as a player, a coach, and a spectator. At the elite level, the game consists of two 45-minute halves with a 15-minute break between them. The teams typically warm up for 45 minutes before the games start. The rules state that you can only substitute three players during the game, which means most players are on the pitch (field) for the full 90 minutes of the game, as well as 45 minutes of warm-up. So, by the end of the game, the players are tired, some nursing injuries sustained during the game, others with newly aggravated chronic problems. Despite what many say, soccer is a full-contact sport: either incidental or deliberate. Shins contact shins, feet to torsos, and heads to shoulders, other heads, or the turf. At the end of a game, then, there is much to compel a player to head straight for the dressing room and into the care of the team’s physiotherapists and masseurs. But at the end of the game the players’ responsibilities do not end. The star players are presented with “Player of the Game” accolades at mid-field, and then the requests for interviews just outside the exit chute begin. And when I say requests, that really means demands, because players are not free to decline an interview. So, tired and sore, they move to the interview positions. And, of course, physical discomfort is only multiplied by the psychological toll of a defeat, especially in a match that was the make-or-break of a team’s place in the next round of the tournament.

***

The English word gauntlet is derived from the Swedish word gatlapp, which comes from the words for run and lane; the English word was used as early as the 17th century in Europe. However, the idea of the gauntlet comes to us from ancient Rome, where soldiers were executed by forcing them to run through a lane lined with other soldiers armed with clubs and whips, the runner usually being slowed by a guide with a sword who ensured that his time on the course was sufficient to kill him. In some versions of the gauntlet, the runner was spared if he emerged alive from the far end; in others he was simply sent through again to face his death. Suffice it to say, in no version, in any culture, was the gauntlet something that you chose; it was always punishment for some crime, and the best that could be hoped for was emerging battered and near death.

At the edge of the Winnipeg soccer pitch, just before the chute that took the players to their dressing rooms, was a gauntlet, of sorts. It was at this place that the pre-teen and teenaged fans, girls mostly, congregated to scream their adoration of the players as they exit the pitch. And they held things out, not to strike the players with, but to have them signed, touched, or simply acknowledged by the players: a jersey, a ball, a shoe, a program. And while all the players had to muster the psychological courage to walk or run this path, they did not have to participate actively in the ordeal, because the fans are positioned some two metres above the level of the pitch. Indeed, many players chose not to stop or even slow as they passed by, perhaps giving a weary wave or nod to the fans shouting their names if they chose to acknowledge them at all. However, occasionally a player would stop and sign one or two items before moving on. And I watched this happen game after game, witnessing the excitement on the faces of the fans, the elation of those who got some small personal touch from a player, and the dejection of those who were passed by without even a nod or a gesture.

***

A friend of mine once recounted a story to me.

“A few years ago, I decided one day to give something to my sons: my undivided and unrestricted attention for as long as they wanted. And so I approached them and said, ‘If we could do anything together today, what would it be?’ It was the middle of winter and we had built a small skating rink in the back-yard. They said, ‘Dad, come and play hockey with us.’ And so I did. I expected the game to last a few minutes, perhaps an hour, before they released me from my self-imposed commitment to them. But it went on and on. We played and we played. And after four hours, they finally said, ‘Let’s go back inside, Dad.’

“And you know what? They still talk about that day with fondness as the ‘best day we ever had.’ And it was simple: I gave to them until they were satisfied.”

I remembered that story as I watched the players exit the field, game after game. And I thought to myself, “What if a player just stopped what she was doing? What if she ignored the pain and effects, physical and psychological, from the game, and simply stood giving to the fans, all of the fans, what they wanted until there was no one left who wanted anything?” Perhaps that is not possible. Perhaps there are too many who want and too little to give. Perhaps.

***

I watched the USA-Sweden game. It was the best game, bar none, that I saw in the group stage of the 2015 FIFA Women’s World Cup. Being ranked higher, the Americans were the heavy favourites. And in the packed stadium, 25,000 of the 32,000 in attendance were clearly on the side of the American team. But the Swedes played a brilliant game of ball control, frustrating the American’s aggressive style. Once the game was over, ending in a 1-1 draw, the players began jumping through the usual media hoops. The Americans left first, most of the stars leaving with a wave to the fans who were calling their names. Some stopped to sign an item or two, most of those items branded with American flags.

Before this game, I had known nothing of the Swedish players. I had never heard names like Nilla Fischer or Olivia Schough, despite the fact that Fischer, at least, is a pretty big deal in Sweden. When it comes to elite female soccer players, my vocabulary is limited to Solo and Sinclair, so it is not surprising that I had no idea who these people were. I love the women’s game, even more than the men’s, but sadly, there is little opportunity to watch elite women’s soccer in Canada. Indeed, I must say that I know little more of Fischer and Schough today than I did on that game day. Wiki pages are pretty bare, and what I can find on the Internet tells me little of them as people. But, as with many of the experiences that have become my repertoire of stories, it is the short, meaningful encounters with others that prove them heroes or villains. It is those fragments of time that make me stop and say, “That was impressive.”

Nilla Fischer is hard to miss in a crowd. She is tall, for a woman, and she has the bright blonde hair that is so common amongst her country-men and women. But, as I caught sight of her out of the corner of my eye, I found myself wondering once again, “What if a player chose to stay, and simply give and give?”

Fischer started first, from what I recall. She signed Swedish flags passed down to her from the stands. Then jerseys and programs. And she carefully caught smart phones tossed to her, and, lining up her face with that of the owner’s and others in the stands, she took one selfie after another. Of course, the American fans, seeing that she was there, were instinctively drawn to this woman who acknowledged their presence. So they, too, in even greater numbers, began to pass down phones and scarves and shoes and, yes, pieces of fruit: I saw one girl pass her a banana! And Fischer signed each item, took each picture, and carefully passed everything back.

Dennis Maione is an author, speaker, and teacher from Winnipeg, Manitoba, Canada. He has been on a 20+ year journey through two bouts of colorectal cancer due to 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

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

“What’s it like to have a genetic predisposition to cancer?” That question has been asked of me exactly zero times. Instead, the follow-up to my declaration that I’ve had colorectal cancer twice is usually “Are you okay now?” or “Are you afraid you’ll get cancer again?”

Both are natural questions.

People have heard the stories: a person gets cancer, and, following some combination of surgery, chemotherapy, and radiation, an oncologist declares that the patient is in remission or NED (no evidence of disease). But often that is not the end of the story, and sometimes—more often than is comfortable for anyone—the cancer reasserts itself. So, when I tell folks I’ve had cancer, their expectation is that I’m in remission, the cancer being dormant or too small to detect.

But that is not the case for me. My cancers are special. Special both in why they occur and how they look and act when they do occur. My cancers arise from my genetics—I have one of a set of mutations collectively called Lynch syndrome—which puts me and others like me into a distinct category, complete with our own physical and psychological challenges.

For me, cancer is the symptom of a bigger problem. Although cancer is still a significant concern for me and people like me, cancer is at least something that can be detected, removed, and even cured. While my genetics can be identified, however, they cannot be repaired: I can never be fixed. From the moment that sperm met egg, my genetics were cast in stone and will remain that way until the day that I die.

To be clear, my genes are not cancer and do not cause cancer, not technically. Instead, what they do is cause a weakness in my body’s natural systems; specifically, they disrupt the protective system that detects and stops errors in my cells from replicating and becoming cancer. I am predisposed to getting cancer.

One thing a predisposition does is create a category of people who are likely to get cancer but who have never had it. In Lynch circles these people are called previvors: people who are 60-80% likely to get colorectal cancer and 40-60% likely to get uterine cancer—along with a host of other less likely cancers—but who have never had cancer.

A predisposition also skews the usual measures to mark survivorship. In the general population, survival after a cancer diagnosis is marked by the passing of certain yearly milestones: doctors often talk about one-year or five-year survival statistics. They can do this because the overall incidence of cancer is low enough to assume they’ll be dealing with only the original cancer—whether or not it metastasizes—in any one person. Thus, once cancer treatment begins and succeeds, the chance that the cancer will reassert itself generally decreases with each passing year. But a predisposition towards cancer does not go away once a cancer has developed. The body does not say, “Well, that’s done; let’s give him a break now.” Instead, those broken mechanisms continue to allow new cancers to form at the same high rates of likelihood, so that a fresh tumour can easily show up, whether a year or a decade later: for me it was 15 years between the first and second ones—both colorectal tumours, each on an opposite end of the large intestine.

This predisposition can exact a terrible psychological toll. Many who are Lynch positive are fearful of the future and revile their genetics, fate, God, or circumstance. Each new medical test, typically a surveillance measure, can trigger dread because of its possible results, with the patient all too aware of the suffering already caused by cancer in their own life or the lives of their family members. On the extreme end of this trauma are those who, upon discovering their Lynch-positive status, would contemplate suicide as a solution to their circumstance.

Fortunately, I’ve not had to live in that dark space, so that, to those who have a hereditary cancer syndrome, I can offer hope. To the previvors—people like my son, who are disposed to cancer but have never been diagnosed with a malignancy—let me encourage you: knowing is better than not knowing, and watching for cancer does not have to be synonymous with dreading, or even anticipating, its arrival. To the cancer patients, let me say: treatment is hard, but we (doctors and patients) are learning more and more every day how to deal effectively with the cancers caused by our genes. And to those, like me, whose bodies have been ravaged by cancer in the past and whose organs are being taken from us, a bit at a time or all at once: life is precious, and we deserve to enjoy it. We can and need to cherish each day without concern about the future.

But, in a scary world where calamity of one kind or another is virtually inevitable, isn’t fear a natural result? Isn’t fear to be expected when natural disasters and auto crashes and cancer seem to be just around the corner for all of us?

No.

Natural or not, we should not live in fear. For fear is but another sort of calamity: the calamity that we cause for ourselves. The one we create in our minds and feed day by day. The calamity that ensures we never get to truly live.

I have a genetic predisposition to cancer. So does my mom. So does my son. But that knowledge does not define my life. It does not consume my thoughts. It is just one part of me, and a very small part, at that. I want to model that to my son. I want to share that with other people with Lynch, whether they have cancer or not. Life is too big and wonderful to be put into a box as small as Lynch syndrome.

Dennis Maione is an author, speaker, and teacher from Winnipeg, Manitoba, Canada. He has been on a 20+ year journey through two bouts of 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 of copies of the softcover edition is always free (except to the International Space Station). To order a paper copy of the book, visit: http://prompterstolife.com/shoppers

I have Lynch syndrome. That's not something you can see just by looking at me, but I have it all the same. It's a genetic mutation. I wish I could say it provided me with some measure of X-Men superpowers, like teleportation or the ability to spray a laser beam out of my eyes, but, sadly, none of these assets are included. Instead, I get cancer. If that is a superpower in any realm, I think I’d rather pass, thank-you very much.

Inherited cancer syndromes have been in the news lately, brought to the fore with recent announcements by Angelina Jolie. In addition to the preventative double-mastectomy that she had a few years back, she has now also had her reproductive organs removed. Jolie has BRCA, a genetic mutation that predisposes the people who carry it to breast and reproductive cancers—at rates high enough that many would say malignancies are virtually inevitable without the steps that Jolie is taking(1).

Lynch syndrome is like BRCA, and credible sources estimate that its rate of occurrence is at least as high if not higher than BRCA. It simply does not get the same press, primarily because there are no high profile spokespersons talking about it.

While Lynch syndrome is not common, it certainly is not rare. Enough people worldwide are afflicted that it does not bear that designation: in the USA, the occurrence rate needs to be less than one in 2000 people for a condition to be considered rare(2). It’s estimated that one in 400 people have Lynch syndrome(3); unfortunately, however, only about 5-10% of those people have actually been diagnosed(4).

But what is this syndrome, why is it worthy of notice, and why is it important that those people who have it are identified?

Watch Out! Here Be Science!

Lynch syndrome is a collection of autosomal dominant gene mutations which are identified by the lack of one or more of a set of proteins in a carrier’s DNA. These proteins are called mismatch repair genes (MMRs), and their lack means that a carrier’s body has a harder time fixing the errors that frequently occur when cells, and their DNA, divide. Thus, while Lynch syndrome does not itself cause cancer, its MMR deficiency means that when errors in cell division occur, a body with Lynch has fewer means to fix or remove those errors, so that the mistakes more often become malignancies(5).

Yikes! That explanation contains a lot of scientific terms, so let’s break them down.

Lynch syndrome is a collection of mutations. Lynch doesn't refer to a single condition but is, rather, a convenient way to group together mutations on five different genes (more may yet be discovered) which all have the same primary effect: a high tendency to develop colon cancer. Most people who have Lynch syndrome have only one of the mutations—although it is possible to have more than one (and increased cancer rates into the bargain). These variants are called by the name of the specific gene or protein that is defective and have names like MLH1 and MSH2 (the two most common variants)(6).

While each mutated gene has its own special powers, they all have a couple of things in common. First, a tendency to high rates of cancers at an early age, and second, a tendency for the colon and uterus to be the primary places where these cancers manifest. Each Lynch mutation also has its own set of additional likely cancers which occur with varying rates of probability, but no matter the type of cancer involved, the statistical likelihood of its occurrence is much higher in Lynch carriers than in the general population(7).

Oh, and one more thing: Lynch mutations are also profoundly under-diagnosed. That is, many more people than the number who’ve been identified to date actually have the condition, and that is a problem(8). More on that later.

Lynch syndrome is an autosomal dominant mutation. A mutation is a deviation from the standard human genome—an individual difference that is permanent(9). If you have a mutation, you have it from birth, you have it in all your DNA, and it makes you special from a genetic standpoint. The fact that it is autosomal dominant means its effects are felt every time the mutation is passed on: Lynch is never recessive, and it can't skip generations(10). If a parent passes on the mutation, the child has the syndrome. There are no people who are carriers yet who experience no effects: the mutation always expresses itself as a lack of a certain protein, that being a protein which provides important protection against cancer.

However, there is good news as a result of this dominant characteristic: a carrier has no more than a 50% chance of passing on the mutation to his or her children. While genes come in pairs, the body’s reproductive cells (eggs or sperm) do not have the gene pairs that full DNA does. Rather, they have only one or other of the genes from each pair in DNA. The chance of the mutated gene, rather than the healthy gene, being in any one reproductive cell is 50%. Half of my sperm, then, have the MSH2 genetic mutation and half do not. Statistically speaking, any children I bear would each have a 50% chance of having Lynch syndrome. In reality, I have three children, and one of them has the mutation. This statistical probability holds up as I look back into my family tree. I can clearly see the effects of the mutation across generations in my mother’s family, discerning from the cancer incidence patterns who the historical carriers are and are not. As I trace the gene’s devastating effects in cancer occurrence, I see its presence in about 50% of my forebears.

Lynch syndrome is a deficiency in one or more mismatch repair proteins (MMR). These proteins are designed to fix problems which regularly occur when cells divide: DNA is a complicated thing, so errors can creep in when it gets duplicated. The job of MMR is to detect errors and then fix them(11). When the errors do not get fixed, they accumulate, eventually resulting in cells which group together, dividing out of control. This uncontrolled division results in tumours—what we refer to as cancer. The biochemical pathways of cancer development are still poorly understood, but a critical factor in Lynch syndrome is that one of the first lines of defence in stopping cancer is absent, thus making cancers appear early (usually before the age of 50), often (60-80% likely in Lynch carriers), and repeatedly (it is not unusual for Lynch carriers to get cancer more than once in their lifetime, more than one kind of cancer, and even different kinds of cancer at once)(12).

The Effects of Lynch Syndrome

People with Lynch syndrome are prone to a variety of cancers. The most prevalent kind is colon cancer, with an occurrence rate of 60-80% before the age of 50. In women who are Lynch carriers, endometrial (wall of the uterus) cancer has almost as high a rate of occurrence. Moreover, in addition to colon and endometrial tumours, a host of other cancers occur with increased incidence, the specific rate depending on the kind of cancer and the variant of Lynch. These include (but are not limited to): small intestine, stomach, esophagus, pancreas, bladder, lung, breast, bladder, skin, brain, and bile duct(13).

All of this is not to say that Lynch syndrome directly causes cancer, because it does not (unfortunately, there are hereditary conditions that do directly cause cancer). Rather, Lynch syndrome allows cancers to happen. So, not everyone who has Lynch will get cancer, despite the very high likelihood.

How Lynch Syndrome is Diagnosed

The gold standard for determining that someone has the mutation is a blood test where the DNA of the patient is examined to detect whether one (or more) of the MMR proteins is absent(14). If it is, the patient is diagnosed with Lynch syndrome. The genetic test can be performed at any point in a person’s lifetime but is generally not done until after a person reaches 18, in order to avoid the ethical problem of testing minors (with or without their express consent) and the psychological difficulty that youngsters may have in bearing such knowledge during their developmental years.

Genetic tests are not done routinely, however, for at least two reasons: these tests are expensive, and there is a lack of capacity in testing labs. They are done only when there is a high likelihood that a person has the mutation. This likelihood is assessed in a couple of ways: first, if a person already has a tumour, the tissue can be tested for certain characteristics to determine the probability of the patient having Lynch; second, if a person does not have cancer, the family tree can be examined to determine whether the occurrence and type of cancers in the family are indicators of an inherited mutation.

One of the prevailing problems with the Lynch testing protocols is that they are not well enough known in the medical community. You would think doctors would be well versed in a condition which affects one in 400 people—as common as HIV-AIDS, Parkinson’s, Crohn’s, and cerebral palsy, and about twice as common as Down syndrome and multiple sclerosis. Nonetheless, many doctors, even in Ivy League medical schools, do not know about Lynch, so too many family trees remain insufficiently examined to detect genetic conditions that may be present.

Moreover, even where knowledge of Lynch does exist, protocols are inconsistently applied. The testing protocols for tumour tissue (most often colon tumours) are not implemented in all jurisdictions in North America. In some places—like Manitoba, Canada, where I live—it is standard practice to test every colorectal tumour for the indicators of Lynch syndrome and to follow up with genetic counselling, DNA tests, and surveillance for patients whose tumours indicate Lynch(15). Follow-up then moves to the family members of Lynch-positive patients. In a neighbouring province, none of this happens.

Thus, you are your own best advocate when it comes to the first steps in determining whether you are at high risk of being a Lynch syndrome carrier. The steps are simple: look at your family tree to see if there has been a high occurrence of cancer (especially colorectal or uterine) in your direct relatives (parents, grandparents, siblings, children), and, if there has, whether those people got cancers at an unusually young age (getting colon cancer before 50 is young). If you see lots of cancers and those showing up at young ages, talk with your family doctor about Lynch syndrome. If he or she is not knowledgable about it, look for a genetic centre with a counsellor you can speak to.

The Treatment for Lynch Syndrome

Lynch syndrome cannot be cured. It often manifests itself as cancer, which can be treated and often cured. However, the underlying genetics cannot be repaired, at least not yet. While there have been some early successes with aspirin therapy to reduce the incidence of colon cancers in people with Lynch, the closest thing to an actual cure for the genetic syndrome is the same as it is with BRCA—to remove the organs in which cancers are most likely to occur(16). Whenever colon cancer occurs in a known case of Lynch syndrome, a subtotal colectomy is generally recommended for both males and females. This entails an almost complete removal of the large intestine, with the small intestine then being connected to a small portion of the rectum to ensure continued bowel control. For women known to have Lynch, a removal of some or all of the reproductive organs—at minimum the uterus, and often the ovaries and fallopian tubes as well—is recommended as soon as their biological families have been completed.

While surgery is one method used to limit the effects of Lynch syndrome, the measure most commonly used is regular surveillance. It is for this reason that identifying people who carry Lynch mutations is so important. Colonoscopies are carried out every one to two years in carriers(17). Not only can any tumours then be detected early, but even better, the polyps which become cancerous over time can be found and snared (removed) even before they turn malignant. When warranted by family or personal history, this surveillance by way of colonoscopy is supplemented by gastroscopy, ultrasound, and MRI procedures to watch for the development of cancer in organs that are the most susceptible. These rigorous surveillance measures can be justified only in people who are suspected or confirmed to have Lynch syndrome.

More People Need to Know More about Lynch Syndrome

More people need to know more about Lynch syndrome: doctors, patients, and the average person. If statistical estimates are correct, about 1.1 million people in North America alone (some estimates are as high as 1.5 million) have Lynch(18). Yet as few as 55,000 of these cases are confirmed. That means there are more than one million people who have Lynch but are not getting regular surveillance for a condition which gives them a 60-80% chance of getting colon cancer. That also means there are 500,000 women with a dramatically elevated risk of uterine cancer who are not being advised of surgical options to reduce their risk. And that is a lot of people.

For more information about Lynch syndrome, check out Lynch Syndrome International at http://lynchcancers.com. To read the journey of one Lynch syndrome carrier, including his two occurrences of colorectal cancer, check out the links to my book at the bottom of this blog— links where you can also read an excerpt from the narrative.

[This is part 1 of a two-part post. Here is part 2: I Have Lynch Syndrome ]

Dennis Maione is an author, speaker, and educator from Winnipeg, Manitoba, Canada. He has been on a protracted journey with colorectal cancer 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 of the softcover edition is always free (except to the International Space Station). To order a paper copy of the book, visit: http://prompterstolife.com/shoppers

It was a day like any other day. Spring on the riverbank in Winnipeg. He spent a lot of time there, homeless. Probably drunk when he saw the guy fall from the Provencher bridge, but he instinctively jumped into the Red River to save him. And, before his life came to a tragic end on the banks of this same river, he repeated the act of courage a year later, dragging a woman from the Red.

Homeless. Alcoholic. Drug addict. Aboriginal. Dirty. Loser.

I could have passed by him and not even noticed he was there. I probably did. Thousands of people did. And, of those who did notice him, few or none would have seen his humanity, just his categorization under any one of a number of labels.

His name was Faron Hall.

We all have names. Names that identify us. Names that mark us. Names that differentiate us from the other seven billion people on this planet. And connected to our names are stories of heroics and villainy. For all of us.

I stood in front of a group of grade 11 students talking about writing personal stories and, knowing they had read at least the start of my book, asked, “What did you think of it?”

The standard answers were given. “You are optimistic.” “You are courageous.” “You are not worried about life.”

And then the one that struck me. “You give your heroes names.”

I had never recognized that before. This happens more often than you might think: that someone points out something about my book that I myself have never noticed, often never intended, at least consciously. From time to time, I too discover a new aspect of my book, such as when it revealed the importance of community to me.

I paused. And replied, “Tell me more about what you saw.”

“Well, your heroes have names and the other people do not.”

My heroes have names. In the preface to What I Learned from Cancer, I wrote:

We all have heroes in our lives. Of course, not all of them rush in to the rescue when we are in dire distress. Not all of them repair our medical tragedies. Some of them just clothe us and feed us. Some take us to school. Some spend their days teaching us, protecting us, healing us, and making us feel loved. Our heroes deserve to be named. Many do not seek this, but all deserve it.

It is perhaps the fact that, in the end, I spent my time writing a book just so I could name my heroes. The people who changed my story, the people who formed my story, the people without whom my story would have been radically different than it was.

His name was Joe Pfeifer. His name was Cliff Yaffe. His name was Rob James. Her name was Debra Maione. And these are but a few of the people in my story who deserve to have their names named. For I could not pass any of them without speaking their names aloud.

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 paper and electronic form at http://dennismaione.com/store

[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