If These Walls Could Talk

Women in southern Alberta who are diagnosed with gynecologic cancer become patients at the Tom Baker Cancer Centre and are treated by the gynecologic oncologists there. However, when surgery is required we become patients on Unit 42 B, located in the adjacent Foothills Hospital building. I first entered the unit like almost all of us do, I was wheeled in on a gurney following major abdominal surgery that had been performed by one of western Canada’s top pelvic cancer surgeons. It was the evening of December 13, 2011, and I can vaguely remember being transferred to a bed in a darkened room, beside me was one other patient. Outside the sun had already disappeared, and as I drifted in and out of consciousness I visualized the rush hour traffic—thousands of cars racing home for dinner, perhaps some rushing to the nearest mall for yet another round of Christmas shopping.

The first night I struggled with some post-operative vertigo and I could hardly focus each time I opened my eyes. The room gradually stopped spinning as the dawn approached, meanwhile morphine dulled my pain and I reached down once or twice to feel a large compression bandage covering my abdomen. At first, I mistook the female resident who came to examine me on rounds that morning for one of the nurses. I didn’t yet realize that residents do most of the rounds on the Foothills cancer wards and report back to the oncologists and surgeons. The other morning routine that soon became engrained in me was having my blood drawn, the hospital lab technicians would regularly make their rounds of the unit at five or six in the morning. 

So, what is the worst thing about being on Unit 42 –aside from being sick or having cancer of course? A number of things: the helplessness; the feeling of anonymity; the rote and the repetition; being talked about and talked to, rather than talked with; the waiting; and the loneliness. I watched as the occasional short-term stay patient was relegated to the hallway due to the unavailability of rooms. It was a reminder to me of how drastically the situation for patients and their families has changed in recent years. Once hospitals were where you stayed when you were too sick to return home; now you go home anyway, cobbling together your own nursing services from friends, relatives and drop-in professionals. I admire the nurses who work on Unit 42— I remain grateful for the ones who went out of their way to make me more comfortable or those who took a couple of extra minutes to offer me some needed words of encouragement. In general, the staff does their best to provide first-rate care, even on an overcrowded unit in what is unmistakably a vintage 1960s building.

My experience that December was likely influenced by the fact that it was only the second time in my life that I’d been hospitalized, and the previous time it had not been on the oncology unit. To me my situation seemed more unbearable, I felt somehow traumatized. Being on a cancer unit shakes your illusions of immortality. It robs you of the sense of invincibility and innocence that once protected you. I’d never directly experienced an atmosphere filled with such hope, fear, anguish or despair, I could almost see it oozing out of the drab, greyish walls that surrounded me.

LIke many of the other patients my surgery had been fairly extensive, it had ultimately involved a small bowel resection as well as the removal of my appendix and omentum. Time crept slowly as my condition gradually improved. Due to some minor complications, it took until December 24 for the oncologists to finally agree that I was well enough to be discharged. In the course of my stay I had endured blood transfusions, numerous tests and scans and too many IV medications to keep track of. I was so incredibly anxious to go home that I was already changing into my clothes when my mom and brother appeared in the door of my room to pick me up. As I left the building through the hospital lobby that Christmas Eve I realized that a part of me would never be able to forget the experience of being a patient on Unit 42. I knew it would haunt me for the remainder of my life.

Celebrating the Ovarian Cancer Community

In the past few years I’ve noticed a growing amount of energy and a stronger sense of purpose within the Canadian ovarian cancer community. Not that we haven’t always been a small but passionate group, committed to fighting this disease and the devastation that it inflicts on women and their families. However, I’ve noticed a gradual shift from when I was first treated six or seven years ago. When I was initially diagnosed with ovarian cancer in November 2011, I can remember that Ovarian Cancer Canada’s primary focus seemed to be on awareness and prevention as well as on support and better resources for women already fighting the disease. But now they have adjusted their mandate to involve more advocacy at the level of the federal government. Pushing for additional research and better treatment options for women with ovarian cancer has become their most important objective.

An estimated 2,800 Canadian women are diagnosed with ovarian cancer each year, an estimated 1,800 die from the disease. There is no question that ovarian cancer research is significantly underfunded and that more has to be done to develop better treatments. Scientific progress in the field has been agonizingly slow, more than half of women who are diagnosed with ovarian cancer still die within five years. Like many who have battled the disease, I dream that perhaps one day soon there will be a test that can detect ovarian cancer in its early stages. The majority of women are currently diagnosed after the cancer has spread beyond their reproductive system. Meanwhile, additional research in the area of immunotherapy might give renewed hope to many of us living with ovarian cancer or facing a recurrence.

 

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It was a major triumph for the Canadian ovarian cancer community when the latest federal budget allocated 10 million dollars to ovarian cancer research. Over the past four years I’ve cheered on the efforts of Ovarian Cancer Canada as they relentlessly lobbied the federal government to invest the much needed 10 million. Numerous meetings with survivors on Parliament Hill helped persuade key politicians that better funding is needed to save thousands of lives. “Today, the Government of Canada has taken steps to invest in needed research which will translate into scientific progress against this disease. This announcement makes an important commitment to women’s health and equity in health care – and it is a milestone made possible because of you,” wrote Ovarian Cancer Canada CEO, Elisabeth Baugh.

While it’s true that ovarian cancer is most often diagnosed in women in their fifties or sixties, it’s a myth to believe that it is only an “old woman’s” disease. I was 46 years old when I found out that I had ovarian cancer. I’m always shocked when I learn about women much younger than I was receiving a similar diagnosis, my heart aches as I witness a life-threatening disease try to shatter their hopes and dreams. It hurts me to see the impact that ovarian cancer can have on their relationships, careers and future ability to have children. I have deep admiration for younger ovarian cancer patients, they often possess a wisdom and maturity that seems beyond their tender years.

 

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Ashley Shandrel Luther  (Elly Mayday)
April 15, 1988 — March 1, 2019

I recently mourned when the community lost a powerful advocate and inspirational leader. The internationally renowned model Elly Mayday passed away in March. Elly Mayday’s given name was Ashley Shandrel Luther. She was born on April 15, 1988 and grew up in Aylesbury, Saskatchewan. The body positive model and activist was first diagnosed with ovarian cancer when she was just 25. Elly was diagnosed with Stage 3 ovarian cancer around the same time that she had two modelling contracts offered to her. But instead of stepping out of the light, she welcomed it. “I figured that maybe I could help someone going through something similar, while continuing on with my own dreams. I mean, I was going through it either way, why not make it as positive as possible?” she once said. Elly vigorously pursued modeling while bravely sharing intimate details about her cancer treatments with her huge number of fans and social media followers. Her legacy will continue to be an inspiration to many.

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.

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.

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.

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.

 

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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.

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 struck by the passages 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. He writes powerfully of the profound uncertainty that comes with his diagnosis.

“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.