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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.

Tommy-Douglas

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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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?

 

blood_cells

 

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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New Year’s Promises

I don’t generally believe in the tradition of making New Year’s resolutions, but I’ve still chosen to make some promises for 2018. I’ve learned that the most important promises are the ones that I make to myself, changes I initiate in an effort to improve the quality of my life or to help nurture a sense of purpose.

I’ll begin by taking a close look at some of my relationships. Many experts argue that the most important choice you’ll ever make is the people you surround yourself with. Since my cancer diagnosis I’ve basically developed zero tolerance for having toxic people in my life. In 2018 I promise to do all that I can to eliminate the power these individuals exert over me. There are some obvious signs of a toxic person and you’ll generally recognize it when you are in such a relationship. Here are some of the common red flags:

  • 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.

If you notice these signs, it’s best to cut the person out of your life completely or to at least keep them at a distance. Such individuals are capable of inflicting serious emotional and psychological harm, especially if you are in frequent contact with them over a prolonged period of time.

 

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i hear a thousand kind words about me
and it makes no difference
yet I hear one insult
and all confidence shatters

focusing on the negative

I can definitely relate to this poem which appears in the collection The Sun and Her Flowers by Rupi Kaur. I promise to be less critical of myself and to focus more on why I am a special and worthwhile human being. I promise to focus on my positive qualities and the valuable contributions that I am able to make while I’m in this world. My battle with cancer has revealed to me that people often won’t love and respect you until you choose to love and respect yourself.

Finally, I promise to be more mindful in my day to day living. I’ve discovered that one of the best ways to quiet my mind and focus my attention is a technique called mindfulness. The renowned scientist and author Jon Kabat-Zinn pioneered using this method with cancer patients and other groups at the University of Massachusetts Medical School. Mindfulness is basically just a way of paying attention, a way of awakening our minds and being present in the here and now. With principles found in Buddhism, mindfulness teaches us to live the moments contained in each day rather than focusing on what might lie ahead.

Acceptance and letting go are crucial components of mindfulness. A philosophy of mindfulness encourages us to come to terms with our life, even difficult experiences such as a cancer diagnosis. Acceptance means seeing things as they actually are in the present. Mindfulness doesn’t require that you have to like your situation—you don’t necessarily have to assume a passive attitude toward suffering or life’s unfairness. However, you must come to terms with things as they are and acknowledge them, whether it’s a diagnosis of cancer or the possibility of its recurrence.

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Winter’s Wrath: What Cancer Patients Need to Cope

I’ve lived my entire life in the harsh Canadian climate and over the years the winters have become ingrained in me. It seems like I’ve endured too many winters to count and the last six of them have been as a cancer patient and cancer survivor. For the over 1 million inhabitants of Calgary, Alberta, the local winters are long, bitter and frigid. The season seems to last forever and the extended deep freeze is only interrupted by the occasional chinook. Not surprisingly, our comparatively short summers are relished and savoured. The months of July and August are like manna from heaven and offer a precious respite from the unrelenting severity of our climate.

Studies have revealed that winter is especially daunting for cancer patients—it’s a time of year that represents an assortment of physical, emotional and psychological challenges to anyone unfortunate enough to be battling cancer. For cancer patients, warmer climates and summer months can be much easier to tolerate. Given this fact, here are some of my recommendations for those of us condemned to endure another prolonged winter.

Get a Flu Shot

On a physical health level, influenza and the common cold abound during the winter months. Cancer and standard cancer treatments, such as chemotherapy and radiation therapy, frequently weaken the immune system, which helps fight off these viruses. People with cancer or a history of the disease are more likely to have serious complications if they get the flu. Some other high risk groups include pregnant women, young children, people over 65, and those diagnosed with lung disease, heart disease or diabetes, They are more likely to end up in the hospital, some might even die from flu-related problems. Getting a flu shot is strongly recommended for most people with cancer as well as cancer survivors. Their family members are normally encouraged to get immunized too.

 

Winter

 

Stay Warm

I strongly suggest that you have a wardrobe of warm winter clothes on hand, including sweaters, parkas, boots and gloves. Deprived of the warmth of summer, individuals with cancer may be at above average risk for hypothermia and other dangerous medical conditions triggered by cold temperatures. When our body can’t produce enough heat to stay warm, hypothermia occurs. Certain medications and medical disorders associated with cancer or cancer treatment can interfere with our body’s natural ability to adjust its temperature. Dehydration, a common side effect of cancer treatment, and having a low amount of body fat may also increase this risk. In addition, some cancer patients who are unable to be physically active may have reduced blood flow, which can lead to hypothermia.

Don’t be SAD

Ultimately there is the emotional and psychological impact of the winter season. Weather often affects people’s moods. Sunlight breaking through clouds can lift our spirits, while a dull, rainy day may make us feel slightly gloomy. While noticeable, these shifts in mood generally don’t affect a person’s ability to cope with daily life. As cancer patients, however, we are sometimes more vulnerable to a type of depression that follows a seasonal pattern. For some people living with cancer, the shortening days of late autumn are the beginning of a type of clinical depression that can last until spring. This condition is called “Seasonal Affective Disorder,” or SAD. Luckily there are ways to cope, sitting near a window or getting outside for a short period of time each day can help. Light box therapy is a popular and often very effective way to cope with mild Seasonal Affective Disorder. The lights are effective because they mimic the sun’s rays.

Pursue a Hobby

Winter is the season to take on an indoor hobby, this is especially true if you are facing cancer. When cancer patients undertake these activities, whether individually or with the guidance of a creative art therapist, they stand to benefit psychologically and emotionally. Recently there’s been a trend toward simple or old-fashioned crafts and hobbies such as knitting. Other common winter diversions include baking, building scale models or simply getting lost in a good book. Some adults, including myself, are even using colouring books to relax and reduce daily stress. This concept started several years ago with the publication of Johanna Basford’s Secret Garden. Her colouring book for adults has since been translated into 14 languages and has sold over one million copies.

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Why You Should Read When Breath Becomes Air

I highly recommend reading Paul Kalanithi’s bestseller, When Breath Becomes Air, especially if you’re dealing with a cancer diagnosis. At the age of 36, on the verge of completing a decade’s training as a neurosurgeon, Kalanithi was diagnosed with inoperable lung cancer. One day he was a doctor treating the dying, the next he was a patient struggling to live. When Breath Becomes Air is a life-affirming reflection on facing our mortality and on the relationship between doctor and patient. I was often mesmerized by the author’s writing skills, almost a little envious that he could be both a talented physician and such an outstanding creator of non-fiction. There are passages in the book where Kalanithi perfectly captures what it’s like to suddenly be living with cancer.

“Severe illness wasn’t life-altering, it was life-shattering. It felt less like an epiphany—a piercing burst of light, illuminating What Really Matters—and more like someone had just firebombed the path forward.”

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Jocelyn P. Newark, R.N. talks with Dr. Paul Kalanithi at the Stanford Hospital and Clinics in February 2014.

I was also struck by a section in which Kalanithi expresses his desire to make the most of what time he has left. One frustrating irony for many of us with cancer is that the physical limitations of the disease don’t allow us to engage in fast paced or frenzied activity.

“Time for me is now double-edged: every day brings me further from the low of my last relapse but closer to the next recurrence—and, eventually, death. Perhaps later than I think, but certainly sooner than I desire. There are, I imagine, two responses to that realization. The most obvious might be an impulse to frantic activity: to “live life to its fullest,” to travel, to dine, to achieve a host of neglected ambitions. Part of the cruelty of cancer, though, is not only that it limits your time; it also limits your energy, vastly reducing the amount you can squeeze into a day. It is a tired hare who now races. And even if I had the energy, I prefer a more tortoiselike approach. I plod, I ponder. Some days, I simply persist.”

As a neurosurgeon, the author is able to examine the doctor-patient relationship from both sides. His illness also helps him to assess his values, including some of the ultimate objectives of medicine and those who practice it. A dying Kalanithi writes eloquently about his profession and why he chose to dedicate himself to such a demanding field.

“The physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.”

“Our patients’ lives and identities may be in our hands, yet death always wins. Even if you are perfect, the world isn’t. The secret is to know that the deck is stacked, that you will lose, that your hands or judgment will slip, and yet still struggle to win for your patients. You can’t ever reach perfection, but you can believe in an asymptote toward which you are ceaselessly striving.”

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Dr. Lucy Kalanithi and Dr. Paul Kalanithi with their daughter, Elizabeth Acadia.

When Breath Becomes Air is a heartbreaking and ultimately beautiful reflection on the meaning of life as well as our own mortality. What makes life worth living in the face of death? What do you do when the future, no longer a ladder toward your goals in life, flattens out into a perpetual present? These are the issues that many people with cancer are confronted with and that Kalanithi writes about so passionately and eloquently.

“I began to realize that coming in such close contact with my own mortality had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.”

Paul Kalanithi died on March 9, 2015, surrounded by members of his large and devoted family. While mourning her husband, Kalanithi’s wife helped to see his manuscript through to publication. Thanks to When Breath Becomes Air, those of us who never met the young doctor will both lament his death and benefit from his extraordinary life.

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Poetic Discourse

Those of you who follow The Teal Diaries are aware that I write prose, however I’ve also been inspired during my cancer treatments to pen a small collection of poetry. Here I’ve chosen to share two of my short poems in honour of National Poetry Month. My compositions Patient’s Lab Results and A Visit to the Emergency Room both explore the life altering power of a cancer diagnosis.

 

Patient’s Lab Results

The sun is preparing to set on a late autumn afternoon,
its rays hold me together as I fall asleep dreaming of
my immaculate incision. Scarcely a week since my surgery.
I almost laugh to think I was such a novice.
Such a common virgin.

I pass through sliding doors to a point of no return.
Then I enter a vacant waiting room,
a place that is sinister, foreboding.
How many women have waited in these chairs?
How many innocent lives transformed?

“The ultrasound shows a growth on your ovary.”
“You need surgery to remove your uterus and right ovary.”
“You have cancer.”

Ultimately, he arrives, seeming anxious to print the pages.
“Here, this is for you.”
His words turn to ice as he offers me the pathology report.
Warmth as he grasps my hand, lending some reassurance.

My world dissolves as I take ownership of a disease.
The rapidly dividing cells, the cancerous tumors,
the abhorrent malignancy.

“Adenocarcinoma of the endometrium”
“The uterine cavity is completely filled with light tan neoplasm.”
“Right ovary with synchronous endometroid adenocarcinoma”

 

Immunotherapy one

 

A Visit to the Emergency Room

Riding unending waves of pain and nausea,
I take a secret pride in my endurance.
The sign over the door says MINOR EMERGENCIES.
Should I draw attention to this irony?

The young nurses seem aloof, peering out from
behind their curtain. I sense that we are to be
endured until morning comes. Around me
are the homeless, the destitute the addicted.

The fluorescent lights have been turned low,
casting a pale greenish tinge across the room.
Beeping monitors and moaning
patients provide the soundtrack.

I wonder if these souls feel entirely unaided,
abandoned, alone amid the chaos.
Each of us is fighting a singular
and solitary battle.

A torrent of frustration, then drowning I panic.
I want to scream that I’m a cancer patient
and my bowels are blocked.
I long for them to have evidence.
When will they be convinced?
I’m a bloated organ about to rupture.

The pre-dawn hours break like a fever
and I emerge from my delirium.
The kind eyes of the doctor and the
contrite look on the nurse’s face.

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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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