The Five W’s of Cancer

The moment I was diagnosed with cancer I entered a psychological realm where wanting to know everything about my disease alternated with fear and aversion. Once the initial shock wore off I realized that I would need accurate information in order to navigate my horrific, and sometimes terrifying, journey through ovarian cancer. Never in my life have I felt so simultaneously overwhelmed by an abundance of medial information and frustrated by a lack of it. This ambiguity of emotions is understandable in cancer patients, as they undergo treatment for some of the most complex and difficult to understand diseases within the field of medical science.

Simply explained, every cell in the body has a tightly regulated system that dictates when it needs to grow, mature and eventually die off. Cancer occurs when cells lose this control and divide and proliferate indiscriminately. Theories, treatments and possible explanations for cancer are abundant. They range from the factual or medically proven to the bizarre, absurd and downright dangerous. Regrettably there are a few contemptible individuals who knowingly try to profit from cancer patients or exploit our unique physical, emotional and psychological needs. I’m a journalism school graduate and I believe this has given me a better perspective than some patients when I’m confronted with information through online or traditional media.

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Whenever I read something pertaining to cancer I always keep in mind the Five W’s that I was taught when I was studying journalism.

Who?

Who carried out the research, and who funded them? If the Academy of American Poets or the League of Canadian Poets is telling you about a new study they funded showing that reading poetry is good for your health, it doesn’t mean that they’re wrong, but they have a vested interest. Knowing who is quoted in a story or who is commenting is also important. Stories often include comments from experts who weren’t involved in the study – these opinions have the power to help clarify how the results fit into the wider context, and whether they’re worth paying attention to. But still be aware of who’s commenting on the study.

What?

What did the researchers actually do? Was the study looking at cells in a dish, mice or patients? These are all crucial stages of testing a new cancer drug. New drugs can’t be tested in patients immediately – cell and animal studies are needed first to check if experimental treatments are safe, effective and worth further investigation. Keep in mind that in an ideal experiment only one thing will be changed at a time, so that you know any differences are because of that one change. In many cases it’s tricky, but not impossible, to try to pin down how much different variables affect cancer risk. Scientists can try to account for the things that cloud the picture, but there will always be gaps. And that’s why cancer research takes a long time, and needs to involve a lot of people.

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Where?

Oncologists and cancer experts aim to publish their results in journals, where their findings are scrutinized by others in their field – a kind of quality assurance called peer review. But oncologists share their work in other ways, particularly at conferences. Often these results are preliminary or don’t have as much information as would be in a published paper. In addition, much of the data is not yet peer reviewed. Unfortunately, these findings are often reported in the news with the same prominence, even though the results might be a long way from the finished article that is beng worked on.

When?

When was the study carried out, and how long did it run for? A week? A month? A year? The longer the better – long-term effects might be missed if you only look at a short timeframe. And if the study looks at people, are the data from the last few years, or from decades ago? An older study might have had more time to look at long-term consequences, but a more recent study could mean that the findings are more relevant to current lifestyle habits.

How Many?

How many subjects took part in the research? And who or what were those participants. Was it 10 mice? 100 patients? 1000? Generally, the more used, the more reliable the results are.

How much?

A recent headline, People who eat organic food are 25 per cent less likely to get cancer, sounds as though you had better eat organic if you want to significantly reduce your cancer risk. However, the headline uses what’s called a relative risk. The study of almost 70.000 volunteers found only a tiny 0.6% reduction in terms of absolute risk. It might also be important to keep in mind that people who buy organic tend to be richer, eat more fruit and vegetables, consume less meat and drink less alcohol.

 

In conclusion, I would like to emphasize that I don’t mean to condemn cancer research or the media where many crucial findings are reported. Most reporting will be accurate and responsible, and even when it isn’t it doesn’t mean that there’s malice behind any mistakes. Communicating science is extremely complicated, and it’s impossible for science journalists to be flawless all the time.

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Are You Sure?

“Are you sure, sweetheart, that you want to be well?… Just so’s you’re sure, sweetheart, and ready to be healed, cause wholeness is no trifling matter. A lot of weight when you’re well.”

The Salt Eaters by Toni Cade Bambara

I recently came across this intriguing quote when I saw it posted by a friend on Facebook. The Salt Eaters, the novel from which the passage is taken, explores the narcissistic aspect of despair and the tremendous responsibility that comes with physical, spiritual, and mental well-being. As a cancer survivor, I can definitely relate to this topic. To me being in good health is a privilege, a gift that we have a responsibility to nurture. Considering issues such as the obligations of wellness, if someone with supernatural healing abilities offered me the opportunity to be in perfect health I sometimes wonder what I would do. Would I simply choose to go back to my life as it was before my cancer diagnosis?

The-Salt-EatersI’ve almost forgotten the me I was before I had cancer. It’s hard to remember how different I was before having my uterus and ovaries removed, before the surgery scars that now adorn my abdomen. There are some things that have remained the same, but there are also many aspects of my life that are different. As hard as I focus, I can’t really remember my old normal. Was there really a time when I had never been inside a cancer centre or had an appointment with an oncologist? I can only vaguely bring to mind a time when my days were not fine-tuned to accommodate the physical, psychological and emotional demands that come with being a cancer survivor. My disease has required me to change in both positive and negative ways, it has beyond a doubt transformed me.

The Salt Eaters is set in a small town in the Southern States. According to one synopsis, Velma Henry, a long-time civil rights activist and feminist, sits in a hospital gown on a stool listening to the musical voice of Minnie Ransom. Old Minnie is a healer; she heals people by contacting the points of physical or psychical pain in her patients and relieving them. Scars heal and wounds close in minutes under her touch. Velma requires Minnie’s help because she has just attempted to kill herself after becoming overwhelmed by the tedious fight for change that never comes. Her healing takes a long time, for the old mystic must first be convinced that Velma truly wants to be cured. Throughout the novel the two women are surrounded by tourists, doctors, and passers-by. They are in a clinic that focuses on traditional medicines of all kinds. The author describes the inner-healing process of Velma, the efforts of Minnie and the thoughts of people looking on or associated with the scene.

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Sometimes I wish a mystic healer like the fictional Minnie Ransom could transport me back to before I had cancer, but then I think that I’ve come too far and acquired too much. In the seven years since my cancer diagnosis, I’ve realized how fortunate I am. I’ve been reminded that often, in our worst challenges come valuable lessons. Through facing the terrible realities of my disease, I’ve learned to be more conscious of living in the moment. I’ve learned it’s all right to pause in our hyper-accelerated culture, I’m allowed to take a break when I’m feeling worn-out. My new normal has also taught me I don’t need material things to make me happy and that family and friends are to be treasured. But perhaps the most valuable lesson I’ve acquired so far during my cancer journey is that life is all too short.

Finally, many critics of The Salt Eaters like that the novel presents an alternative view of medicine and its relationship to pain. I’m intrigued with the author’s view that pain is not a symptom, but the problem itself. In the book healing comes from within the patient, guided by Minnie rather than through treatment from the outside. In today’s world it is also more relevant than ever that the novel situates illness in a socio-historical realm. Velma is sick because of racial and sexual injustice. Others in the novel are obsessed with nuclear waste, chemical leaks, lead pipes and their potential health hazards. Nearly forty years after The Salt Eaters was published scientific studies continue to demonstrate the various links between our external environment and our internal health.

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Health Care for All

When I was first diagnosed with cancer in November 2011 I was like many Canadians, I was proud of our universal health care but I had never really been required to test it. I had never dealt with a chronic or life-threatening illness before. I’d never even been hospitalized for surgery or seen the inside of a cancer centre. My innocence of what’s involved in being treated for cancer was shattered almost literally overnight. It took three surgeries and several rounds of chemotherapy to force my disease into remission, along the way there were too many outpatient appointments, tests and scans for me to count. I’ve currently logged thousands of hours in hospitals and seen dozens of physicians and physicians in training, that’s enough to consider myself an insider when it comes to the basics of Canada’s health care system.

It is by no means a perfect system and I realize it has many flaws, but I would still defend it especially against the way that health care is delivered in the United States. “Regardless of political allegiance, Canadians are nearly unanimous that a universal health system is a good thing— for reasons of economics and social justice,” writes Andre Picard in Matters of Life and Death. Indeed, the role of Tommy Douglas in shaping publicly funded health care over half a century ago is celebrated and sometimes mythologized. Obviously, I have a reason to get more emotional over Douglas and his contribution than most Canadians. As a cancer patient I acknowledge his legacy as I go through my treatments and each time I use my Alberta Health card or red Tom Baker Cancer Centre card.

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Tommy Douglas speaking at a political rally.

 

Lately I’ve been reading a lot online and in the media about the Canadian health care system and how it stacks up against the radically different private health care system that is offered in the United States. Needless to say, President Donald Trump’s attempt to repeal Oboma Care has brought these important issues to the forefront. I belong to a Facebook group for ovarian cancer survivors and the women are predominately American. I shudder at the issues that many of them are facing in terms of insurance and their finances. For example, one woman in the group posted that she felt pressured financially to return to her job during treatment.

“I had to go back to work this week, well I had no choice. I need to pay my health insurance premium. My job is very physical so I had to get clearance from my doctor. My next chemo is Tuesday it will be my 5th of 6. I have never felt this exhausted.”

When I learn about cases in which people seem desperate or on the verge of financial collapse, I can only say that I’m thankful beyond words that I live in Canada. Here I can receive excellent state of the art care without the financial burdens that are faced by many U.S. cancer patients.

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Many Americans criticize Canada’s public health care system because they perceive it as having long wait times and outdated technology. This has definitely not been my personal experience as a cancer patient. I will never forget when Dr. Danielle Martin, a Canadian health policy expert, travelled to Washington to testify before a special senate hearing. Senator Bernie Sanders had organized a hearing about what the American health care system could learn from other countries about controlling costs and ensuring universal coverage. During her testimony, Dr. Martin was confronted by a rather smug U.S. senator. Her composure and the way that she handled the situation made many Canadians, including myself, proud.

SENATOR BURR:  Dr. Martin in your testimony you state that the focus should be on reducing waiting times in a way that is equitable for all. What length of time do you consider to be equitable when waiting for care?

MARTIN: Well, in fact the Wait Time Alliance in Canada, sir, has established benchmarks across a variety of different diagnoses for what’s a reasonable period to wait . . . You know, I waited more than thirty minutes at the security line to get into this building today, and when I arrived in the lobby I noticed across the hall that there was a second entry point with no lineup whatsoever. Sometimes it’s not actually about the amount of resources that you have but rather about how you organize people in order to use your queues more effectively. And that’s what we’re working to do because we believe that when you try to address wait times you should do it in a way the benefits everyone, not just people who can afford to pay.

SENATOR BURR:  On average how many Canadian patients on a waiting list die each year? Do you know?

MARTIN: I don’t, sir, but I know that there are forty-five thousand in America who die waiting because they don’t have insurance at all.

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Gratitude for Life’s Simple Pleasures

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Gratitude is currently a hot topic within the cancer community, but in my view it’s not the cancer itself that suddenly bestows a person with gratitude. A major cancer diagnosis does 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.

Since my cancer diagnosis six 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 co-worker or their favorite esthetics studio is getting ready to raise its prices.

I’ve come to the conclusion that cancer itself doesn’t make us see what’s meaningful; we see it when our attention turns away from the small and trivial distractions that surround us. Taking life for granted is essentially our culturally-induced default mode — we are trained to overlook the essential. As a cancer survivor I’ve ultimately been freed from this monotonous, addictive cycle.

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These days I’m grateful for:

The oncologists who oversaw my case, especially my surgeon. I remain in awe of the fact that they literally saved my life, I’m grateful that the practice of medicine is what each of my doctors has chosen as their profession. “Whatever it is in oncologists that makes them want to be oncologists—that crazy mix of fierceness, optimism, arrogance and compassion—I get a contact high from it. It’s like love at first sight or touching something on fire. It’s like making a choice and refusing to look back,” observed Nina Riggs in her memoir The Bright Hour.

The nurses who were with me 24/7 in the hospital. I established a bond with several of the nurses when at one point complications forced me to spend seven consecutive weeks on the cancer unit. Weeks in cancer time feel like years, even decades, but the magnificent staff somehow helped me pull through.

People who donate blood. Many cancer patients require blood due to surgery or chemotherapy. I needed several transfusions during my treatment. Each time they hung a unit I remember thinking that I was being given “the gift of life” from a complete stranger.

The arrival of spring after a long hard winter. The sense of renewal or rebirth that is associated with spring has been heightened for me now that I’ve become a cancer survivor. I appreciate the small wonders like a pair of finches building a nest in our yard and the poppies that bloom in the garden each June.

Each morning when I wake up and become conscious that my disease is in remission and that I’m lying in my own bed. I give a sigh of relief when I discover that I’m not in the hospital and there is no need to drive to the cancer centre for chemotherapy or a checkup.

And gratitude, finally, for the readers of these posts. I am grateful that I get to share my ovarian cancer journey with you and, in turn, get to hear your stories.

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Words That Heal

National Poetry Month, which takes place each April, is a celebration of poetry introduced in 1996. Those of you who follow The Teal Diaries are aware that I don’t often write poetry, however I’ve been inspired during my cancer treatments to pen a small collection.

In writing The Decades Pass I was motivated by a poem called He is Allowed into the Lab by Michael Harris. Like Harris, I’ve chosen to use the microscope as a metaphor for the intense scrutiny of the self and one’s life that occurs when one is diagnosed with cancer. My poem December Night was inspired by my first night recovering from cancer surgery.

 

The Decades Pass

Decades ago in my school’s biology lab I stuck a lancet in my finger.
One or two bright red drops on the slide to examine.
Under the microscope I saw my tiny cells in motion.
I gazed in awe at the unfolding miracle.
Precious in worth, exquisite in their design,
how perfect they were to my innocent eyes.

Astonished then to behold the building blocks of life,
but now what have they offered me in return?
Each one is fragile and prone to malfunction,
imperfect under the oncologist’s microscope.

Beneath that microscope I have suffered far too long,
enduring the relentless scrutiny of my diminutive body.
I am tired of never-ending demands for perfection,
of being another pathology to be cured.

Put away the microscopes, the anticipation, and the longing.
Each day is a blessing for me to enjoy in quiet solitude.
At rest, I ask myself why did I ever demand more?

 

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December Night

“Were you on Unit 42 after your last surgery?”
I hear the nurse ask as I regain consciousness.
“No,” I mumble in slow motion through a thick fog.
I’m transported on a gurney, oblivious to the fact that
it’s early evening and my destination is the cancer ward.

I arrive and the darkness welcomes me on a deep
winter night, a crushing stillness surrounds me.
A compression bandage covers my fresh incision,
I reach down to touch my surgeon’s trademark.

My mother arrives and I have nurse Crystal.
A morphine pump to control my pain.
My throat is parched and I ask for water.
Not yet, Crystal calmly removes my glass.

For those below it’s simply another December night.
The world is turning, only two weeks until Christmas.
Outside an endless stream of headlights pressing in unison
toward some crucial or important goal.

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Doing Cancer My Own Way

I care for myself. The more solitary, the more friendless, the more unsustained I am, the more I will respect myself.”

— Charlotte Brontë, Jane Eyre

One thing that’s become evident to me as a cancer survivor is that we all respond to cancer differently. Our response depends primarily on our own personality and past life experiences. How we deal with a life-threatening illness will differ according to our personal values and may also be connected to how we have responded to crises in the past. It’s also important to note that we each have our own toolbox of resiliency to work with. Cancer is extremely personal, so our response tends to be personal too. This has definitely been my experience as an ovarian cancer survivor. I’ve learned a great deal about who I truly am as a result of my emotional and psychological reactions to having gynecological cancer. It’s been a gradual process during the course of which I’ve become more nurturing and accepting of myself.

 

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Posing with my mom and brother Ray at the annual Ovarian Cancer Canada Walk of Hope. The nationwide event is held each September.

 

The moment I was diagnosed with cancer I entered a psychological realm where wanting to know everything about the disease alternated with fear and aversion. I realized it was solemn news when a week after my hysterectomy the phone range and my surgeon wanted to see me immediately. As I sat in my gynecologist’s office on that autumn afternoon, he was thoughtful enough to provide me with my own copy of the surgical pathology report, a crucial document outlining the specifics of my uterine and ovarian cancer. He estimated that it would be a couple of weeks before I could have a consultation with a team of oncologists at the Tom Baker Cancer Centre. In the coming days I developed a love-hate relationship with the information that I had been given. Numb and in shock, I read over the three-page report repeatedly, meticulously researching the strange and frightening medical terminology.

Simply explained, every cell in the body has a tightly regulated system that dictates when it needs to grow, mature and eventually die off. Cancer occurs when cells lose this control and divide and proliferate indiscriminately. Theories, treatments and possible explanations for cancer are abundant. They range from the factual or medically proven to the bizarre, absurd and downright dangerous. Regrettably there are a few contemptible individuals who knowingly try to profit from cancer patients or exploit our physical, emotional, and psychological needs. When I access printed materials or the abundance of online resources that are available, I remain highly selective. When I started treatment I immediately came to appreciate that the most specific and reliable information was coming from my oncologist and the incredibly skilled medical professionals on my cancer care team.

 

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Above all, as time has passed I’ve come to trust myself, I feel like the foremost expert on my body and the disease that’s invaded it, Decisions concerning my treatment have always been made in conjunction with my oncology team, however most final verdicts rest with me. For example, in the fall of 2012 I made the excruciatingly difficult decision to forego treatment with radiation, opting for observation instead. The risks of pelvic radiation include the possibility of rectal bleeding; even worse, some patients will experience a bowel blockage or a permanent change in bowel or bladder habits after their treatments are finished.

For most cancer patients the benefits of undergoing radiation outweigh these serious risks. But due to my personal medical history it’s almost certain that it would have posed a substantial danger. The radiation oncologist informed me that due to my previous bowel blockage during chemotherapy the possibility of severe complications occurring would be much higher than average. Besides, I was undeniably exhausted from three consecutive abdominal surgeries in addition to five cycles of carboplatin, at the time I felt I could endure little more.

Finally, no one has the right to tell you how to respond emotionally to your cancer or to lecture you about how you should live your life after a diagnosis. Early in my cancer journey I was confronted by a couple of individuals who felt that I should not allow cancer to change my life. How could I have not changed? I’m not going back to the way I was before I had cancer. I see that as a waste of all that I have been through. As a cancer patient I’ve searched for kindness and compassion from my family, friends and health professionals because that’s what I’ve always done when I’m faced with life’s most difficult situations. I believe that I should be able to express my emotions without being judged by others, so naturally this was my philosophy when I got cancer. I sometimes struggle with fitting in and belonging, so I’ve become involved with supportive organizations such as Ovarian Cancer Canada and Wellspring.

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Becoming a Survivor

sur•vi•vor (sərˈvīvər/) noun — A person who is able to live their life despite experiencing difficulties.

It’s been over six years since my cancer diagnosis and there are still times when I ask myself soul searching questions about my disease. A lot of the issues I’ve been thinking about lately concern the terms that we use when we talk about cancer, take survivor and survivorship for example. Although these expressions seem to be embedded in the cancer lexicon, there is still confusion regarding their meaning. For instance, when exactly did I become a cancer survivor? Who is considered to be a survivor? What criteria can or should be used to determine if someone is in this category?

“Cancer survivorship begins at diagnosis and covers the physical, psychosocial, and economic issues of cancer, from diagnosis until the end of life.” As a woman who has fought gynaecological cancer, I’ve come to accept this commonly used description of cancer survivorship, I accept the all-encompassing notion that’s presented in this definition because cancer does impact every single aspect of a person’s life. In retrospect, I also believe that my survivorship began that moment in my gynecologist’s office when he told me the devastating details of my pathology report. Simply being diagnosed with cancer made me a survivor, from this perspective I didn’t have to wait until after I had completed almost a year of treatment. Before the surgeons at the Tom Baker Cancer Centre cut into my body and before the first drop of chemotherapy solution ran ominously into my veins I was already a survivor in the eyes of the cancer community.

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As the well-known gynecologic oncologist Dr. Rick Bouley explains, the commonly accepted definition of “survivor” within the cancer community is simply a person diagnosed with cancer. So once the terrifying sentence, “I’m so sorry, the biopsy shows that you have cancer,” leaves your doctor’s lips and pierces your soul, you begin life anew as a cancer survivor. I remember my first chemotherapy treatment and how insecure I was, part of me felt like I was less of a “survivor” than some of the other cancer patients who had been fighting the disease for years. I can laugh at the situation now, but I was rather worried that some of the veteran chemotherapy patients might be able to tell that I was a newbie. They would ascertain that I looked too healthy and had all of my hair! When I arrived for my first session, I noticed that the people around me seemed to have many types and stages of cancer—what is more, a good number of them exhibited full heads of hair.

Finally, the notion that some people seem to have, that disease outcome (whether you live or die) determines if you are a survivor is erroneous. I’m still inspired by the words of the late American sportscaster Stuart Scott. “When you die, it does not mean that you lose to cancer,” he said. “You beat cancer by how you live, why you live, and in the manner in which you live,” There’s a controversial, yet commonly held, view that a cancer diagnosis is a war or a battle that must be won. The problem with this philosophy is that it places 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.

In my opinion, a person’s cancer outcome will depend almost exclusively on medical science. If someone’s cancer progresses, it’s a failure of the medical treatments that are currently available, plain and simple. I know of plenty of women who’ve succumbed to ovarian cancer and they were among the bravest and most resolute people on Earth. Ultimately, they are no less survivors than those of us who are lucky enough to be “cured” or to enjoy decades of remission.

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