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.

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.

 

simulator

 

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.”

 

hope-hands

 

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.

The Long Road Back: Physical Fitness After Cancer

One of the aspects of cancer that surprised me the most is the physical toll that it took on my body. From my muscle strength to my ability to endure exercise, I noticed a significant decline in what my body could accomplish immediately after treatment. It didn’t help that near the end of my treatment in 2012 I was hospitalized for seven weeks while my doctors tended to a dangerous and extremely painful bowel obstruction. Nothing had prepared me for the length of my hospitalized, and I seriously don’t think my medical team planned for me to have such an extended stay in an acute care bed on the cancer unit. I will always remember the relief and unrestrained joy that I felt when I was finally discharged from the hospital. However, it wasn’t long before I realized that my ordeal had taken a tremendous toll on my body.

For the first time in my life I learned what it’s like not to be able to walk medium or long distances. It took nearly all the strength I could muster just to stand or walk very short distances, and climbing stairs was out of the question for me. I quickly discovered that the muscles in my legs had atrophied during the endless weeks that I was confined to a hospital bed. On the day I went home I had an absolutely helpless feeling as I was transported from my hospital unit to my mother’s waiting car in a wheelchair. As we drove I knew my recovery would be arduous and probably take months.

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Like many cancer patients, I began slowly and took my recovery one day at a time.  As your ability increases, you should begin to expand your activities, looking to improve your aerobic fit­ness, strength, and flexibility. No one exercise or activity is uni­versally recommended over another. The best exercises or activities are the ones that are safe and that you enjoy (or dislike the least). The central pillar of my exercise routine involves taking a 20-minute walk every day. Study after study has extolled walking as a simple, inexpensive exercise with incredible health benefits. From a cancer patient’s perspective, walking regularly has been proven to strengthen the body and ease the mind. Several recent studies suggest that higher levels of physical activity are associated with a reduced risk of the cancer coming back, and longer survival after a cancer diagnosis.

The amount of exercise you require or that is medically advisable differs among individuals and you should always consult your doctor before establishing a fitness routine. The American Cancer Society recommends that cancer survivors get 30 to 60 minutes of moderate to vigorous exercise at least five days each week. They also give some suggestions for fitting exercise into your day:

  • Start a daily walking routine.
  • Wear a fitness tracker, and try to go a bit farther each day.
  • Walk or bike to your destination, when you can.
  • Exercise with family, friends, or co-workers.
  • Use a stationary bicycle or treadmill.

The evidence linking physical activity with improved quality of life in those undergoing active cancer treatment and those who have completed it is incredibly strong. There are proven emotional and psychological benefits in addition to the physical ones. The most robust evidence is for people who have completed active cancer treatment, notes Dr. Kerry Courneya from the University of Alberta, who has led a number of clinical trials of physical activity in cancer patients. What experts have long suspected has now been proven. As a cancer survivor, exercising could help you live a longer life—free from recurrence.

Essentially there are three main types of exercises that can help cancer patients get back in shape.

  1. Flexibility exercises (stretching). Virtually everyone can do flexibility exercises. Stretching is important to keep moving, to maintain mobility. If you’re not yet ready for more vigorous exercise, you should at least stay flexible.
  2. Aerobic exercise, such as brisk walking, jogging, and swimming. This kind of exercise burns calories and helps you lose weight. Aerobic exercise also builds cardiovascular fitness, which lowers the risk of heart attackstroke, and diabetes.
  3. Resistance training (lifting weights or isometric exercise), which builds muscle. Many people lose muscle, but gain fat, through cancer treatment. For those with a high fat-to-lean mass ratio, resistance training can be especially helpful.

It’s recommend that you consult with your physician or a fitness expert to learn more about which exercises are the best for you. Personally, I know that the road to fitness after cancer can be long and difficult, but it can also be extremely rewarding. Within a year after finishing my treatment, I had progressed from pushing an IV pole down a hospital corridor to completing five kilometres in the Ovarian Cancer Canada Walk of Hope!

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.