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The Problem with Cancer and the Warrior Ethic

I’ve been thinking a lot lately about the controversial, yet commonly held, notion that a cancer diagnosis is a war or a battle that must be won. Doesn’t this philosophy place the burden almost entirely on us patients? If we die or if our cancer ultimately recurs it’s because we didn’t think positively enough or we weren’t strong enough to will it away. I know of plenty of women who’ve succumbed to ovarian cancer and they were among the bravest and most resolute people on Earth. In my opinion, a person’s cancer outcome will depend almost exclusively on medical science. Of course, there are always certain unknown factors or variables—what we sometimes refer to as chance. I’ve learned to face the reality that much of what occurs in terms of my cancer is beyond my individual control, no matter how strong or determined I try to be.

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When I was first diagnosed, an iconic image associated with cancer kept going through my mind. I closed my eyes and I could see one of Canada’s most legendary and revered figures, Marathon of Hope runner Terry Fox. I can vividly remember Fox from the photographs and TV clips of my early adolescent years. He continues to represent a certain type of heroism to me, and his legacy offers proof that one person can change the world in the face of tremendous adversity. Nevertheless, it was beyond the young Fox’s control, that his cancer returned and he was forced to stop his Marathon of Hope. In the end, he received multiple chemotherapy treatments and even experimental interferon treatments; in spite of everything, the disease continued to spread. Terry Fox died on June 28, 1981, with his family by his side. My point is that even the heroes among us don’t have it within their power to simply will cancer away.

Well-known screenwriter and producer Josh Friedman was recently diagnosed with kidney cancer, he writes eloquently about the warrior mentality in a personal essay he authored for Time magazine. “Cancer doesn’t give a damn how tough you are,” he argues. “Cancer doesn’t care if you stared down the North Koreans like John McCain, or won the Tour De France like Lance Armstrong.”

Friedman is adamant that patients shouldn’t feel a burden to be brave or to be victorious in some kind of ongoing battle with their disease. “You don’t battle cancer. You don’t fight it. If cancer wants you it sneaks into your room at night and just takes you. It doesn’t care if you’re John Wayne or John McCain.”

“The tough guy narrative is seductive,”  Friedman reminds his readers. “It suggests we have control over our fate, that we can will cancer away. These are lies we tell ourselves. And for some patients that’s helpful. It gets them through the day. For them, it’s a useful tool. But courageousness is a standard that no sick person should feel like they have to meet.”

One popular theory that makes me especially angry is one that links specific personality types to an increased risk of getting cancer. “The Type C Connection: The Behavioral Links to Cancer and Your Health,” argues that the personality traits of some people make them more prone to cancer. Typically, “Type C” individuals are the antithesis of warriors: They are unassertive people-pleasers who repress their emotions.

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Modern researchers have largely debunked the idea that negative emotions heighten an individual’s susceptibility to developing cancer, or that maintaining a positive outlook can stave off cancer’s return or delay its progression. I agree with the majority of oncologists and cancer researchers who argue that there is no evidence to support the idea that personality can influence the growth of malignant cells. There is no cancer for which attitude can halt the progression of disease. A handful of studies have found that women who are anxious or depressed are more likely to suffer recurrences of breast cancer and die from the condition. However, it’s obviously true, and understandable, that dying women are more likely to be anxious and depressed.

A recent article in the Washington Post bore the straightforward headline: “It doesn’t take a warrior to beat cancer. It takes a treatment that works.” The author, Steven Petrow, discusses his opinion that people shouldn’t think that their cancer outcome is primarily in their hands. If someone’s cancer progresses, it’s a failure of the medical treatments that are currently available, plain and simple.

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The Etiquette of Cancer

I’ve been living with cancer for six years now, having been through three abdominal cancer surgeries, five rounds of chemotherapy as well as countless scans and procedures, I’ve become deeply aware of the “etiquette of cancer.” Or the lack thereof. Etiquette has everything to do with situation, context, timing, individuals and circumstances—cancer etiquette is the same. I can’t offer any concrete rules, only suggestions and advice about how to communicate when the subject you’re dealing with is cancer. Perhaps most importantly you should be authentic and true to your relationship. Essentially the person hasn’t changed and wants to be treated as you always have. He or she is still that special someone in your life, with cancer, for the time being.

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Respect the Person With Cancer’s Privacy

One important area of etiquette that was sometimes breached during my diagnosis and treatment was respect for my privacy as a cancer patient. Of course, I won’t name people specifically, but there were one or two family acquaintances who took it upon themselves to spread the news of my illness. Please don’t share cancer information unless you know you have permission from the individual. Don’t use telephone calls, emails, social media, newsletters or bulletins to comment about a person without their specific consent. This rule is especially important when it comes to something as intensely personal as one’s health or a cancer diagnosis.

 

Practice the “Ring Theory” of Kvetching

Recently a technique has gained attention for coping with a major life crisis, such as a serious illness.  It’s called the ring theory of kvetching, so named by the psychologist Susan Silk, writing in the LA Times in 2013. Silk drew on her experiences as a breast cancer patient. When she declined one colleague’s visit, pleading exhaustion, she was told, “This isn’t just about you.” “It’s not?” she wondered. “My breast cancer is not about me? It’s about you?” The main principle of the ring theory is that support, caring, comfort FLOWS IN. Kvetching, venting, complaining, requests for empathy, all of this only FLOWS OUT. The person or people with the illness, trauma, or other enormously challenging life situation — they get to complain outwardly to their first circle of support. The first circle of support does NOT vent — about the challenges, the loss of sleep, the emotional toll, etc. — to the person or people at the centre of the trauma.

 

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Don’t Offer Treatment Advice

When I was undergoing treatment, I can remember getting angry when people other than my cancer care team would try to give me medical information. “If I want information regarding cancer or cancer treatment, I’ll ask for it,” I thought. In the months following my cancer diagnosis I was inundated with information and advice from my medical team. Consequently, the articles from newspapers, magazines or online publications that I received from other people were annoying. For the most part these pieces were irrelevant and unnecessary. Also be careful when presenting teas, potions or homeopathic remedies to treat cancer. When some individuals gave me a gift basket with ginger and dandelion root, I didn’t bother to explain to them that these nutrients are specifically mentioned on a list oncologists give to their patients. Ginger and dandelion root do not combine well with many traditional chemotherapy drugs, and therefore patients should refrain from using them during active treatment.

 

Don’t Minimize the Diagnosis

Don’t declare, “Oh, cancer’s no big deal. My mom has had that for 20 years and is doing fine.” Remember that I’m not your mom and that any cancer is a serious issue. Even skin cancer, bladder cancer and other “minor” malignancies kill people every day. They cause suffering. They cause organ removal and disfigurement and fear and shame. I hate when people try to deny this fact or to minimize it by giving me false reassurance or by saying that I’m going to fine. The truth is I don’t know I’m going to be fine, you don’t know I’m going to be fine, even my oncologist doesn’t know what my outcome will be. Instead, I feel comforted by phrases like “I believe in you.” or “I’m pulling for you.”

 

Don’t be Judgmental or Ask for a Health History

For many cancer patients there’s nothing worse than being sick and getting advice from the healthy, because it’s almost like insinuating we did something to make this happen to us. It may be true in some cases that our lifestyle or health care choices increase the odds of getting cancer or contribute to cancer progression. However, if you cause someone with cancer to absorb blame and feel shame it will almost certainly make matters worse. Shame and guilt are unnecessary burdens to carry. From everything that’s known about the emotions and health, acceptance and forgiveness are what cancer patients need to cultivate and enhance healing, not self-condemnation or self-blame.

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Finding the Resilience to Face a New Year

This is the sixth New Year that I’ve celebrated since my cancer diagnosis, and each one brings with it a mixture of hope, fear and uncertainty. For many cancer survivors watching everyone plan for the future is difficult, it can produce mixed emotions and make the dawn of a new year extremely challenging.

That’s why I’m not going to use this blog to give a lecture about New Year’s resolutions or to suggest that you make elaborate promises to yourself. I realize that living with cancer often renders such gestures trivial and that your life is probably being planned week-by-week or month-by-month. Instead I’ve chosen to share some of my favourite quotations about resilience.

I hope the meditations that I’ve selected make the beginning of another year a little less daunting for you and provide you with strength and inspiration for your cancer journey. As someone once said, life doesn’t get easier or more forgiving, but we can choose to get stronger and more resilient.

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“Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.”

— Elizabeth Edwards

 

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I’ll rise.

— Maya Angelou

 

“My scars remind me that I did indeed survive my deepest wounds. That in itself is an accomplishment. And they bring to mind something else, too. They remind me that the damage life has inflicted on me has, in many places, left me stronger and more resilient. What hurt me in the past has actually made me better equipped to face the present.”

— Steve Goodier

 

“You all know that I have been sustained throughout my life by three saving graces—my family, my friends and a faith in the power of resilience and hope. These graces have carried me through difficult times and they have brought more joy to the good times than I ever could have imagined.”

— Elizabeth Edwards

 

“Those who make us believe that anything’s possible and fire our imagination over the long haul, are often the ones who have survived the bleakest of circumstances. The men and women who have every reason to despair, but don’t, may have the most to teach us, not only about how to hold true to our beliefs, but about how such a life can bring about seemingly impossible social change.”

— Paul Rogat Loeb

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Five-Year Survivor: On Reaching Another Cancer Milestone

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In just a few weeks I’ll face an emotional and bittersweet milestone, the fifth anniversary of my cancer diagnosis. Above all I’m grateful that I made it through the grueling medical treatments that I had in 2011 and 2012. There were moments when I felt so sick and physically weak from surgery or chemotherapy that I was afraid I might die. I thank God for my oncology team; they were always there and never stopped encouraging me. It turns out they were right to be optimistic about my prognosis, or at least to be confident that I could achieve remission. I’ve been in remission from ovarian cancer, a disease that many refer to as the silent killer of women, for four years now.

As my cancer anniversary approaches, I’ve been thinking a great deal about how much things have changed for me. Personally, I’ve discovered that physical attractiveness, material possessions and social status all matter less to me now. These things frequently seem to fade into irrelevance as I confront a life-threatening illness. Meanwhile, my relationships with other people, discovering ways that I can make a difference in the world and learning more about the essence of who I am are currently at the forefront of my agenda and have an extremely high priority to me.  Most of all, I’m aware of time and of the immeasurable value of each day that I’m alive. Here are some powerful meditations that I though I would share.

“I ask you to imagine that there is a bank account that credits your account each morning with $86,400. It carries over no balance from day to day. Every evening the bank deletes whatever part of the balance you failed to use during the day. What would you do? Draw out every cent, of course.

Each of us has such a bank, its name is time. Every morning, it credits you 86,400 seconds. Every night it writes off at a loss, whatever of this you failed to invest to a good purpose. It carries over no balance. It allows no overdraft. Each day it opens a new account for you. Each night it burns the remains of the day. If you fail to use the day’s deposits, the loss is yours.

There is no drawing against “tomorrow.” You must live in the present on today’s deposits. Invest it so as to get from it the utmost in happiness and health. The clock is running. Make the most of today.”

 — Marc Levy, French novelist

“It’s being here now that’s important. There’s no past and there’s no future. Time is a very misleading thing. All there is ever is the now. We can gain experience from the past, but we can’t relive it; and we can hope for the future, but we don’t know if there is one.”

― George Harrison

“You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island of opportunities and look toward another land. There is no other land; there is no other life but this.”

— Henry David Thoreau

 

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In the film Dead Poets Society Robin Williams plays an unconventional English teacher named John Keating. In one of the movie’s most memorable scenes the teacher stands with his students gazing at some vintage school portraits. As they view the photographs of previous generations, this is what Keating tells the group of young men in his class:

“They’re not that different from you, are they? Same haircuts. Full of hormones,  just like you. Invincible,  just like you feel. The world is their oyster. They believe they’re destined for great things,  just like many of you, their eyes are full of hope,  just like you. Did they wait until it was too late to make from their lives even one iota of what they were capable? Because, you see gentlemen, these boys are now fertilizing daffodils. But if you listen real close, you can hear them whisper their legacy to you. Go on, lean in. Listen, you hear it?   Carpe   hear it?   Carpe, carpe diem, seize the day boys, make your lives extraordinary.”

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Fresh Hope for a New Year

This is the fifth New Year that I’ve celebrated since my cancer diagnosis, and each one brings with it a mixture of hope, fear and uncertainty. For many cancer survivors watching everyone plan for the future is difficult, it can produce mixed emotions and make the dawn of a new year extremely challenging.

That’s why I’m not going to use this blog to give a lecture about New Year’s resolutions or to suggest that you make elaborate promises to yourself. I realize that living with cancer often renders such gestures trivial and that your life is probably being planned week-by-week or month-by-month. Instead I’ve chosen to share some of my favorite motivational quotations, may these compelling words make the beginning of another year a little less daunting for you and may the theme of infinite hope provide you with strength and inspiration for your cancer journey.

 

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“Remember, hope is a good thing, maybe the best of things, and no good thing ever dies.”

— Stephen King, Rita Hayworth and the Shawshank Redemption

 

“I took a deep breath and listened to the old brag of my heart; I am, I am, I am.”

— Sylvia Plath, The Bell Jar

 

“It’s really a wonder that I haven’t dropped all my ideals, because they seem so absurd and impossible to carry out. Yet I keep them, because in spite of everything, I still believe that people are really good at heart. I simply can’t build my hopes on a foundation consisting of confusion, misery and death.”

— Anne Frank, The Diary of a Young Girl

 

“The best way to not feel hopeless is to get up and do something. Don’t wait for good things to happen to you. If you go out and make some good things happen, you will fill the world with hope, you will fill yourself with hope.”

— Barack Obama

 

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Pretty women wonder where my secret lies.
I’m not cute or built to suit a fashion model’s size
But when I start to tell them,
They think I’m telling lies.
I say,
It’s in the reach of my arms
The span of my hips,
The stride of my step,
The curl of my lips.
I’m a woman
Phenomenally.
Phenomenal woman,
That’s me.

— Maya Angelou, Phenomenal Woman

 

“When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live.”

— Stuart Scott

 

“I can be changed by what happens to me. But I refuse to be reduced by it.”

— Maya Angelou

 

“I’m not a dreamer, and I’m not saying this will initiate any kind of definitive answer or cure to cancer, but I believe in miracles. I have to.”

— Terry Fox

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Lessons in Survivorship: The Wisdom of Cancer

PurpleRainAs I’ve mentioned before in this blog, self-assessment or the need to reprioritize your life is a virtually inevitable part of being a cancer survivor. This month marks the fourth anniversary of my diagnosis. My gynecologist informed me of my disease on November 3, 2011, and this will always remain one of the most significant days of my life. How can one explain such a profound and life-altering event to a person who has always been relatively healthy? Some psychologists and experts have observed that cancer patients divide their lives into two parts or that we are figuratively born twice.

Since the beginning of my cancer experience there have been moments of epiphany and numerous opportunities for personal reflection. I want to share a few of the survivorship lessons that I’ve come to terms with over the past four years. According to professionals in the cancer field, survivorship is living with and beyond cancer. Survivorship covers the physical, psychosocial, and economic issues of cancer, from diagnosis until the end of life. This is some of what I’ve learned so far.

If something isn’t going to matter or have any impact five years from now, I probably shouldn’t spend time worrying about the issue. Not until my diagnosis with cancer did I realize how much time I spend worrying about the future or regretting the past. I believe more than ever in the importance of focusing my attention on the present. I can live each moment only once, so why waste that precious moment in a state of self-induced stress or anxiety? As for the direction of my life, I’ve ultimately gained a clearer perspective about what my priorities are—I’m proud of my ability to concentrate on the values and relationships that I know are the most significant.

I tend to enjoy my own company more than I enjoy being in groups or socializing with other people. I’ve accepted that I’m an introvert and there’s nothing wrong with the way I am, it’s not necessary for me to apologize. I lament the fact that my personality type is so frequently misunderstood and that introversion is often confused with being shy. Shyness is the fear of negative judgment, and introversion is a preference for quiet, minimally stimulating environments. I become the most upset when I’m accused of disliking people in general and of lacking the skills to be an extrovert. The truth is that introverts comprise at least one quarter of the population and we continue to make our own unique contributions to society.

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It’s counterproductive to surround myself with people who don’t want to be with me or don’t value me. I’ve reached a point on my cancer journey where I find it’s no longer necessary to impress anyone. If they like me the way I am, that’s fine. If they don’t, it’s their loss.

I’ve definitely developed zero tolerance for having toxic people in my life.

Some Signs of a Toxic Person

Nothing you can say or do is good enough.
They comment on the smallest flaw or perceived imperfection.
They drag up your past and won’t allow you to grow or be different.
They act like they are fabulous and never make mistakes.
They leave you feeling guilty and ashamed of who you are.
They are critical, controlling and don’t think about your needs.
They leave you feeling beaten, wounded, battered bruised and torn.
They violate your boundaries and never respect no.
They don’t care about your feelings and they like to see you suffer.
It’s always about them and what they think and want and feel.

I never use the phrase someday and I try to avoid talking about future plans in vague or uncertain terms. Most people I know take the future for granted and think of it as something that will always be there for them. In 2012 I spent over a month and a half on Unit 42 at Calgary’s Foothills Hospital. This women’s cancer ward is predominately a place of bravery, triumph, heartbreak and tears. When I looked into some of the other patients’ eyes, I could see them begging for a future, and I understood that they would do almost anything for the gift of just a few more months in this world. As a cancer survivor I’ve discovered how precarious tomorrow really is and that you can’t always depend on someday.

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I’ve learned it’s not wrong to put my own needs first and that it’s essential to take care of myself physically and emotionally. After undergoing five cycles of chemotherapy and three cancer surgeries within eight months—I’m finally treating my body with the respect it deserves. We’re all pressured daily to move faster, do more, sleep less, earn more money and obtain that promotion. Within the cancer community, I hear the term “self-care” a lot. I don’t know if I’m fond of the expression, but it’s a concept I believe in strongly, I consider it particularly relevant for women with cancer. As women we are socially encouraged to give everyone else our time, energy and attention—but often feel conflicted or guilty when we stop long enough to take equally thoughtful care of ourselves.

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In a League of Your Own: Why Every Cancer Patient is Different

I recently received some grim news regarding a close acquaintance with advanced breast cancer. After achieving about one year of remission, her doctors have informed her that her cancer has metastasized to her lungs. Apparently her current prognosis is extremely poor and oncologists have indicated that her disease is expected to progress to the terminal stage. I have to acknowledge that I have a certain degree of difficulty coping with circumstances such as this. Psychologically I accumulate unnecessary anxiety as I compare myself to other cancer patients. When I hear of bad outcomes, I keep asking myself if I’ll be next.

One of the psychological aspects of having ovarian cancer is fear of recurrence. Although I’ve been in remission for about two years now, I remain alarmed that when my cancer was diagnosed it was fairly advanced. The statistics reveal that recurrence rates are notoriously high for my type and stage of cancer. Throughout my personal cancer journey I’ve noticed that this fear of recurrence is heightened by another phenomenon, the tendency to compare my cancer to other people’s experience with the disease. For example, I’ll sometimes remind myself that if my disease follows the path that it does with most women I’ll encounter at least one recurrence within five years of my initial diagnosis.

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There are few analogies that can accurately convey such feelings of dread to those who haven’t experienced them. Some cancer survivors have compared living with the disease to crossing a battlefield and watching your comrades die gruesomely while you dodge the bullets. Personally there have been moments when I’ve felt a sense of doom, it’s as if I’m a death row inmate, but with no certainty of when my execution will actually occur.

I have some extremely important advice to give to myself and to anyone else being treated for cancer.

1. Resist the temptation to compare the disease in your body to what is happening to other people fighting cancer, even if your condition seems highly similar.

2. Don’t dwell on statistics or the possibility of recurrence.

For instance, most women with ovarian cancer do have at least one relapse within five years of being diagnosed, but that standard rate of recurrence won’t necessary happen to me. The reality is that medical science has proven that all cancer patients are unique. What’s more, because cancer statistics are based on large groups of people, they cannot be used to predict exactly what will happen to you. Everyone is different. Treatments and how people respond to treatment can differ greatly. A well-known American cancer survivor, Joanna Montgomery, chronicles her experiences of treatment, motherhood and marriage in a personal blog called It’s Cancer, Baby. As Montgomery heavily underscored in one of her online articles, we are all individuals.

“The truth is that every single person’s cancer is different —even those diagnosed as the same type and stage —because that cancer exists in a unique human body unlike no other, with a unique life history and genealogy. I’ve met people with cancer of a lesser stage than mine who didn’t make it, while I’ve just as frequently met survivors who dealt with higher stages of cancer decades in the past and are still going strong. There’s no algorithm that will determine which of us will make it and which of us won’t. There are endless factors at play, and cancer is unpredictable and constantly morphing.”

The stress and anxiety generated from trying to predict what will happen to you or from scrutinizing other cancer patients might actually be detrimental to your health and the healing process. Medical science acknowledges a connection between our thoughts and emotions and certain physical aspects of healing, such as our immune system. The power of the mind-body connection has been widely accepted by mainstream medicine since the 1960s or 1970s. During those decades, a great deal of research in the field of biofeedback and self-regulation showed that human beings could learn to control many physiological functions. Even those ones that had previously been thought involuntary, such as heart rate and blood pressure, were found to be at least partially under our control. A number of pioneering studies drew on relaxation, meditation and yoga.

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The power we possess over own bodies and our personal health and the case for each of us being a unique biological organism was also established in a groundbreaking book entitled Mind as Healer, Mind as Slayer. In 1977, this book by Dr. Kenneth Pelletier helped to inspire widespread interest in mind-body interactions. Pelletier presents a variety of compelling evidence that the mind is a major participant in illness and that the mind can be a major factor in health as well. The majority of his case studies focused on serious chronic diseases, including heart disease and cancer.

So my recommendation if you are fighting cancer is to maintain faith in your body’s ability to heal itself. Even more importantly remember that your cancer journey is unlike anyone else’s and that your outcome may be radically different from those in similar medical circumstances. You are special, your body and spirit are both unique, so don’t assume you can predict the course your cancer will take simply by observing the disease in others.

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