A Teal Christmas

Like every Christmas since my cancer diagnosis, this one will be unlike the ones I celebrated before I became a cancer survivor, A major cancer diagnosis often causes you to view the world differently—things that once seemed enormously important during the Christmas season lose significance and become almost trivial. Personally, I’ve discovered that having elaborate decorations, expensive gifts or wearing designer winter fashions 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 at the forefront of my agenda and have an extremely high priority to me during the holidays.

Many cancer survivors will attest to the fact that there are times during the season 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.

Since my ovarian cancer diagnosis eight 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 more profound questions that others have the luxury of ignoring. Individuals diagnosed with cancer suddenly 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. During the holidays I sometimes feel frustrated because most things my friends and family care about seem fairly trivial to me now. For example, they got cut off in traffic on the way to one of their annual Christmas parties or the latest popular gadget for someone on their Christmas list is currently out of stock.

I still enjoy traditions like exchanging gifts, and most Christmases I’m able to partake in a delicious turkey dinner. However, it’s the small things that matter most as I savour each moment. Every year I make a Christmas list that I share with family members, but the items on my list are usually inexpensive things that are intended to make my daily life as a cancer survivor more pleasurable. The grand total is almost always less than two hundred dollars. It may sound trite, but I carry within my heart a list of things that can’t be bought or wrapped up in a box. If I wrote them down, my Christmas list would read like a combination of a bucket list and some of the hopes and dreams that I have for all women living with ovarian cancer. 

Of course, the best Christmas gift that every current and future ovarian cancer patient could receive is a cure. But in the meantime, we need newer and better treatments as well as ways of preventing the disease or detecting it sooner. The survival rate for ovarian cancer remains dismal compared with most other types of cancer, this is essentially because the majority of women aren’t diagnosed until the disease is advanced and has spread beyond their reproductive organs. There is no reliable screening test for ovarian cancer and the symptoms are often vague. One common misperception is that a Pap Test for cervical cancer can also detect the presence of ovarian cancer, it definitely cannot. 

I strongly urge anyone who would like to make a difference in the fight against ovarian cancer to donate to research this holiday season. Fortunately, women whose lives have been affected by this terrible disease have a number of non-profit advocacy groups working diligently for us. For Canadian citizens or those residing in Canada I recommend donating to Ovarian Cancer Canada OCC. For American citizens or those living in the United States I recommend donating to the Ovarian Cancer Research Alliance OCRA.

Happy Holidays!

A Unique Kind of Fear

Finding out you have cancer, I can personally attest, is a unique kind of fear, but I believe this feeling is heightened even more for women who learn that they have ovarian cancer. It’s among the most feared and deadly cancers, one that tends to inhabit our worst nightmares of the disease. That is why patients with gynecologic cancer, especially ovarian, are frequently warned not to Google their condition or research it online. Admittedly most of the information that is available on websites is general or focusses on worst case scenarios. Oncologists are eager to remind us that broad statistics don’t take into consideration an individual patient’s age or overall health. In many cases the data presented is likely to overlook a lot of specific variables. Even so, when I go online the numbers pertaining to ovarian cancer are enough to terrify me.

Devastating Statistics

Ovarian cancer is the eighth leading cause of cancer in women, according to the World Health Organization. Nearly 300,000 women worldwide will develop it this year. On a global scale their prospects are often bleak, it’s estimated that one in six will die within three months of diagnosis and fewer than half will be alive in five years.

Each year about  2,800 Canadian women are newly diagnosed with ovarian cancer and an estimated 1,800 die from it. Mortality rates for ovarian cancer have declined only slightly in the forty years since the “War on Cancer” was declared. Most other cancers have shown a much greater reduction in mortality.

Ovarian cancer survival rates remain much lower than breast cancer and other cancers that affect women. Five-year survival rates are commonly used to compare different cancers. In Canada, the five-year net survival for ovarian cancer is approximately 44 per cent. This means that, on average, only about 44 per cent of the women who are diagnosed with ovarian cancer will survive for at least 5 years.

Like a Loaded Gun

One woman with ovarian cancer compared the fear of recurrence to a person always having a loaded gun pressed against her back. You never know when they will pull the trigger, or even if they will, but every minute you are conscious of them being there. I find this metaphor quite powerful, you never know if or when your cancer will return and this uncertainty is something that you must accept as part of your everyday life. A cancer recurrence happens because some cancer cells were left behind and eventually grow and become apparent. The cancer may come back to the same place as the original tumor or to another place in the body. According to the Ovarian Cancer Research Alliance around 70 per cent of patients diagnosed with ovarian cancer will have a recurrence. However, one of the most important factors in determining an individual’s risk of recurrence is the stage of their cancer at diagnosis.

Patients diagnosed with stage I have a 10 per cent chance of recurrence.

Patients diagnosed with stage II have a 30 per cent chance of recurrence.

Patients diagnosed with stage III have a 70 to 90 per cent chance of recurrence

Patients diagnosed with stage IV have a 90 to 95 per cent chance of recurrence.

Recurrent ovarian cancer is treatable but rarely curable. Women with recurrent ovarian cancer may have to undergo another surgery. Many women with recurrent ovarian cancer receive chemotherapy for a prolonged period of time, sometimes continuously for the rest of their life.

Elly Mayday (1988-2019) continued her modelling career while undergoing treatment for ovarian cancer.

Braver Than I Thought

I’ve certainly learned that when you are diagnosed with cancer there are moments when you become overwhelmed and sense that your world is spinning violently out of control. The fundamental paradox for me is that I’m often in situations where I 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 steadfast and unbroken. 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 that I never appreciated or properly acknowledged in myself. Subjected to the ultimate test, I’ve sometimes shocked myself with my enormous capacity to overcome adversity and to confront physical pain and suffering.

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 just 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 people 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, especially 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 a large oncology unit. This time my situation seemed more unbearable to me, 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 such an atmosphere—one filled with hope, fear, anguish and despair. There were times during my stay when 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. During the course of my stay I had endured blood transfusions, numerous tests and scans and too many IV medications for me 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. As I left the building through the busy lobby that Christmas Eve, I realized that psychologically I would never actually leave behind the experience of being a patient on Unit 42. I knew it would influence 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.

The Road Ahead

As 2018 was drawing to a close, I was forced to confront an unexpected bump on the never-ending road that is my cancer journey. In October I went to my family physician with some symptoms that I feared might indicate a recurrence of my ovarian cancer. While she was reasonably certain that my cancer had not returned, she wanted to be safe and made some arrangements for me to see my principal oncologist. It had been nearly a year since my last appointment and I’d almost forgotten the prevailing stress and uncertainty associated with visits to the Tom Baker Centre. When I arrived my eyes scanned the building’s vintage 1980s interior, finally resting on the rows of chairs occupied by anxious patients.

Ultimately the resident who examined me was reassuring, she quickly explained that the medical team would like to order a CT scan as a precaution to rule out the possibility that my malignancy had returned. On a Thursday afternoon, just a few weeks before Christmas, my oncologist’s office phoned to inform me that my procedure had been scheduled. Three days later I was at the hospital checking into diagnostic imaging, it was as if I was walking back into a nightmare that I thought was over. As I positioned myself in the scanner, I prayed that I would soon be facing the culmination of The Great Recurrence Scare of 2018 and not confirmation that cancer had invaded my body for the second time. Rarely have I been so painfully uncertain about what a new year would bring me.

 

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To cut to the chase, my test revealed no evidence for tumor recurrence or metastatic disease in my abdomen or pelvis. I’m still cancer free after six years! I’m filled with gratitude when I think of the women who aren’t as fortunate as I am, there are too many of my teal sisters who never achieve a complete remission from their ovarian cancer. Obviously, as I think ahead to how I want to spend 2019 I’m more determined than ever to make the most of each day and not squander the precious moments of life that have been granted to me.

One of my goals for 2019 is to live in the present and not spend an excessive amount of my time regretting the past or worrying about what will happen to me in the future. About six years ago, soon after I was diagnosed with cancer, I discovered a technique called mindfulness. Jon Kabat-Zinn pioneered using this method with cancer patients and other groups battling chronic pain or illness at the University of Massachusetts Medical School. Kabat-Zinn describes mindfulness as follows:

“Mindfulness means paying attention in a particular way: on purpose, in the present moment, and non-judgmentally. This kind of attention nurtures greater awareness, clarity, and acceptance of the present-moment reality. It wakes us up to the fact that our lives unfold only in moments If we are not fully present for many of those moments, we may not only miss what is most valuable in our lives but also fail to realize the richness and the depth of our possibilities for growth and transformation.”

 

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Whatever transpires this year, I promise to treat myself with kindness and compassion. I pledge to be less critical of myself and to focus more on why I am a special and worthwhile human being. I’ll attempt to concentrate on my positive qualities and the valuable contributions that I am able to make while I’m in this world. Kabat-Zinn stresses that we should nurture our sense of self-esteem and self-worth. At the same time, he acknowledges that many people need help or reminders that they are worthy and deserve to be loved.

“Perhaps we just need little reminders from time to time that we are already dignified, deserving, worthy. Sometimes we don’t feel that way because of the wounds and the scars we carry from the past or because of the uncertainty of the future. It is doubtful that we came to feel undeserving on our own. We were helped to feel unworthy. We were taught it in a thousand ways when we were little, and we learned our lessons.”

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.

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.