Tag Archives: cancer survivorship

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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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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Exploring Cancer’s Realm

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds duel citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

— Susan Sontag

As a cancer survivor I often feel like I’m an outsider trying to fit into the world I once occupied, the world of the healthy and cancer free. My cancer diagnosis has caused me to view the world differently—for example many things that once seemed enormously important have lost significance and become almost trivial. I’ve discovered that physical attractiveness, material possessions and social status all matter less to me now. Not surprisingly, these things frequently seem to fade into irrelevance as I confront a life-threatening illness. The realm of cancer is teeming with complex, and sometimes even existential, topics. Healthy individuals are able to carry on with day-to-day trivialities, but I’ve had to stop in order to reflect on some of the deeper questions that others have the luxury of ignoring. Since being informed that I have cancer I’ve discovered that I can no longer defer life’s existential questions. Why am I here? What is the purpose of my life? Who am I?

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Susan Sontag was an American writer and commentator on modern culture. She published essays, novels, and short stories. Sontag explored society’s attitudes toward cancer in her work Illness as Metaphor.

Regrettably, I’ve learned that our society still has misperceptions about chronic illnesses, such as cancer, and that there is still indignity for those of us living with such conditions. This legacy isn’t surprising considering the profound fear, confusion and stigma surrounding cancer for centuries. Until relatively recently the word was hardly spoken in public or said out loud. In 1978 Susan Sontag wrote the classic, and still controversial work, Illness as Metaphor. A breast cancer patient herself when she was authoring the book, Sontag argues that the metaphors and myths surrounding certain illnesses add greatly to the suffering of patients and frequently inhibit them from seeking proper treatment. By demystifying the fantasies surrounding cancer, Sontag strives to show cancer for what it is—just a disease. Cancer, she argues, is not a curse, not a punishment, certainly not an embarrassment, and it is often highly curable if good treatment is followed.

It’s no wonder that some cancer patients still choose to avoid revealing their illness to others. Some don’t want to be viewed differently. They just want to be normal, not defined by the disease. Others may choose to stay silent to protect their privacy and emotional stability. When the news broke last month that musical legend David Bowie had died at the age of 69 after an 18-month battle with cancer, fans around the world expressed not just grief but shock. Despite more than five decades on the world stage, under the glare of a public spotlight, the rock-and-roll icon managed to keep his cancer journey a secret from fans and friends alike, sharing it only with a handful of people in his inner circle.

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Sometimes when people are diagnosed, they receive a lot of advice from friends, family members or others—virtually everyone has known someone with a form of the disease. Often the intentions are good, but the stories can be scary and frequently make a patient feel worse. When a sizeable network of people learned that I had been diagnosed with uterine and ovarian cancer, I received information that was both inappropriate and that increased my anxiety. I was inundated with everything from holistic remedies for cancer to stories about aunt so-and-so’s bowel cancer. Keeping a diagnosis a secret keeps these kinds of opinions away.

Ultimately when my cancer became common knowledge, there was another aspect that I found emotionally unsettling. The moment family members, friends and acquaintances learned about my illness, all of a sudden, it wasn’t about me anymore. To a large extent it became about trying to make sure my mother, who was in the role of my caregiver, was okay. She had a reliable network that was concerned about her and that wanted to make certain that she wasn’t becoming too overwhelmed or too upset. I don’t resent the support that was provided to my mom, but at the time I remember being a little envious. It made me more keenly aware that I don’t possess a large number of close friends myself; it also became slightly harder for me to focus on my own emotional issues and specific needs.

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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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It’s All So Trivial: Emotional Isolation and Cancer Patients

loneliness

In my introductory blog post, Survivorship 101, I defined the concept of cancer survivorship. Survivorship refers to the physical, psychological, social, and economic issues of living with cancer, from diagnosis until the end of life. In this post I would like to delve deeper into some of the social and psychological aspects of having cancer. For example, a major cancer diagnosis often causes you to view the world differently—things that once seemed enormously important may lose significance and become almost trivial. 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 at the moment.

Like many people dealing with cancer I’ve sometimes felt isolated from those not going through a similar experience. Relatives, friends and acquaintances mean well, but they are unable to fully empathize or to understand certain aspects of what I am going through. Many cancer survivors will attest to the fact that there are times when they are surrounded by people and still feel very alone. This type of emotional isolation occurs when you discover that you can no longer relate to people in the same way you did before. Things that were important to you in the past are no longer important to you, and your friends and family don’t understand why you have changed so much. I’ve noticed that the books I read, the movies or television that I watch and the activities that I like to participate in have all changed a fair amount since my cancer diagnosis, so have the topics that I prefer to discuss. This transformation has affected my personal relationships and how I feel about those closest to me.

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According to the Alberta CancerBridges team, such deep-seated feelings of isolation have been well documented in the cancer care literature. There is even a term that has been created to describe this experience—it’s known as survivor loneliness. Last summer I watched a rare long-term survivor of ovarian cancer address the crowd at an Ovarian Cancer Canada fundraiser. I admire her ability to speak eloquently in public about her decade long struggle. Throughout her speech she had nothing but praise for her friends and family, I could sense that she is profoundly grateful for the unconditional love and support that they have given her over the years. But paradoxically, the former nurse also characterized her personal battle with cancer as a “long lonely journey.” Survivor loneliness can take many forms and occur for a number of reasons. It’s typically felt as a profound sense of isolation from the people around you. As one battles cancer, this sense of isolation can arise from a feeling that you are alone in your awareness of mortality.

Since my cancer diagnosis two years ago, I’ve been required to think about my mortality. I’ve also had to tend to many practical matters that I didn’t anticipate that I’d have to deal with until I was much older. While everyone around me carries on with their lives, I’ve had to stop and reflect on some of the deeper questions of life that others have the luxury of ignoring. Individuals diagnosed with cancer often find themselves contemplating existential questions. Why am I here? What is the purpose of my life? Who am I? These issues are brought to the forefront of your mind when facing a potentially deadly disease. Sometimes I feel frustrated by the fact that most things that my friends and family care about seem fairly trivial to me now. For example, they got cut off in traffic, they had a disagreement with a coworker or their favorite esthetics studio is getting ready to raise its prices.

Cancer experts and psychologists generally agree that the most effective way to combat isolation and survivor loneliness is to connect with other people who are undergoing a similar ordeal. There are numerous support groups and organizations throughout Canada specializing in the extremely complex social and emotional aspects of cancer.

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Cancer shakes your illusions of immortality. It robs you of the sense of invincibility and innocence that once protected you. But what replaces that feeling is infinitely more valuable: a new awareness and a mature understanding of both life and death.

From Picking Up the Pieces: Moving Forward After Surviving Cancer
by Sherri Magee and Kathy Scalzo

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Survivorship 101

My health had always been tremendously good, and then one afternoon in November 2011 I received an unexpected diagnosis of both uterine and ovarian cancer. In hindsight words such as devastating, terrifying, and life-altering seem inadequate to describe the magnitude of that experience—my daily existence was shattered. Sometimes it’s still as if I’m trapped in an appalling dream, a nightmarish reality that to date has encompassed three major abdominal surgeries and five cycles of chemotherapy. As with countless other cancer survivors I have asked “Why me?” while I’ve struggled to find anything positive about living with such an affliction. I have accepted the likelihood that my life may never be exactly the same; I must adjust to a “new normal” as day by day I contend with the consequences of an insidious, spiteful, and often fatal disease.

In this blog I will be writing about various aspects of my cancer journey. I have chosen to call it The Teal Diaries, since teal is the colour used to represent awareness of gynecological cancers. While pink ribbons are strongly associated with breast cancer, significantly fewer people realize that ovarian cancer survivors, and those who wish to support them, wear teal ribbons. If there is less public awareness regarding ovarian and endometrial  cancer, I suspect that it’s because they are both less prevalent and have a significantly higher mortality rate than breast cancer.

I’ve waged my relentless battle for over a year now, I currently seem to have the upper hand and my doctors indicate that they are cautiously optimistic regarding my prognosis. Since the beginning of my cancer experience there have been moments of epiphany and numerous opportunities for personal reflection. Being that this is my initial blog post, I want to share a few of the survivorship lessons that I’ve experienced over the past fourteen months. 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 what I’ve learned so far.

You never know how strong you are until being strong is the only option you have left.

I certainly don’t aspire to become a legend like  Terry Fox or to be anything resembling a saint or a cancer hero. But still, I’ve discovered inner qualities and personal strengths I never appreciated or properly acknowledged in myself. Subjected to the ultimate test, I’ve sometimes shocked myself with my capacity to overcome adversity and to confront physical pain and suffering. As one of the approximately 17,000 Canadian women living with ovarian cancer, I obviously know firsthand how it impacts a life. For survivors there is tremendous emotional pressure, along with social and financial turmoil.

There are moments when you have the impression that your world is spinning violently out of control. The fundamental paradox is that I’m often able to feel a sense of power, combined with courage and self-assurance. It’s as if I’m standing in life’s Category 5 hurricane and remaining resolute, steadfast and unbroken. “Okay cancer, you ruthless bastard, attack me with all the intensity you’ve got! I will still transcend you and the pure malevolence that you represent,” I tell myself. Some pundits would consider this type of resolve impressive, especially as demonstrated by a socially introverted, physically petite woman, such as myself—I stand only four feet 10 inches at the absolute maximum.

Appreciate the flowers in your own backyard.

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I reached an unparalleled low physically and emotionally last year, during the spring of 2012. By May there were potentially life-threatening complications due to my rigorous cancer treatments. Vomiting and in pain, I was transported to the emergency room through early rush hour traffic. It was a bright May morning when I entered the doors of Calgary’s largest medical centre and was admitted suffering from a bowel blockage. I acknowledge that at first I literally wanted to die rather than face what was happening. At least nothing had prepared me for the invasive medical procedures that I would endure in the coming weeks or for the length of my hospitalization.

Forty-eight agonizing days elapsed, during which time I received virtually all of my nutrition through a peripherally inserted central catheter (PICC or PIC line). On June 18, 2012, intestinal surgery was skillfully performed. When I awoke in the recovery room I sensed that my crisis was at last resolved. Although only half-conscious, I was filled with elation as they informed me that the procedure to correct my obstruction had been successful. The primary cause was established to be scar tissue from my previous operations and now my digestive system was expected to function normally again. Most of all, I was comforted and reassured by the fact that my cancer had not visibly metastasized to other regions of my body.

My discharge from the hospital ultimately took place on a balmy summer afternoon; the clothes I had worn nearly two months earlier felt hot and close fitting. I was so weak from my ordeal that I struggled to walk just 10 or 20 metres, but I was in awe as I observed how the seasons had changed and nearly everything had been transformed. I can still remember the blissful journey home and my sense of anticipation during that short, but very emancipating, commute. Even the air filling my lungs was like a breath of freedom.

Upon arriving at the small bungalow where I live, something magical occurred. My eyes surveyed the backyard and the unexpected sight of poppies in full bloom completely overwhelmed me. It was as if I were seeing them for the first time. I remain inspired by their exquisiteness, vaguely encouraged by the realization that their brilliant orange petals and intricately designed purple centres will never appear ordinary to me again. I’m certain that from now on, I’ll be eagerly awaiting the phenomenal appearance of the poppies each June!

Learn how to embrace the new pretty.

There are literally thousands of magazine articles, journal studies and online resources devoted to the topic of sexuality and women’s cancers. How a woman copes and deals with the changes to her body are unique for each survivor, of course such factors as age and relationship status come into play. Studies have confirmed that the most prevalent issue for those diagnosed with uterine or ovarian cancer is a sense of profound loss. Psychologically I continue to mourn the demise of my reproductive organs and the loss of what I always perceived as an impeccably strong and healthy body.

Throughout my cancer ordeal I have felt moments of contempt, occasionally mixed with rage. I find it easy to despise a culture that is inclined to objectify women—placing intense pressure on us to possess a perfect body. I’ve become acutely sensitive to the media, the advertising industry and to what I believe are ridiculous and superficial standards of female beauty.

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There have been circumstances when I’ve waged war using humour or an “in your face” attitude. During my convalescence from one of my cancer surgeries I recall being engaged in a discussion with my mother while sorting through a stack of mail. I paused as I unearthed a catalogue for a major Canadian department store, cringing at the sight of the cover. Predictably it was flaunting an image of a model with an unblemished face and body. The New Pretty, the caption breathlessly announced. All of a sudden I grinned mischievously, as in one defiant move I turned and flashed my freshly scarred and stapled abdomen. “I’ll show them the new pretty,” I boldly declared.

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