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

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

[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

“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.