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.

Cancer and This Uncertain Life

“In a way though, the certainty of death was easier than this uncertain life. The path forward would seem obvious if only I knew how many months or years I had left. Tell me three months, I’d spend time with family. Tell me one year, I’d have a plan (write the book). Give me 10 years, I’d get back to treating diseases. The pedestrian truth that you live one day at a time didn’t help. What was I supposed to do with that day?”

— Dr. Paul Kalanithi on living with stage IV lung cancer


Before I was diagnosed with cancer, I had no true sense of how precarious our existence is or of how uncertain my future had probably always been. Then, on November 3, 2011, I learned that the course of my entire life could change in just a single day. I was at home recovering from hysterectomy surgery and awaiting the final results of my pathology report. At about 10:15 or 10:30 that morning the telephone rang and a quick glance at the call display confirmed that it was my gynecologist’s office. I was still in my pajamas and resting in my favorite livingroom chair. What happened next is something that I will always associate with how completely fragile life is.

At first as I held the receiver to my ear I tried to remain composed, but in just a few seconds my heart was racing and I could hardly breathe. I was consumed by a sense of dread so powerful that suddenly I was watching myself in slow motion. I listened as in a calm voice a nurse informed me that my gynecologist would like to see me immediately, if possible he wanted me to come to his office at 5 p.m. that evening. Prohibited from divulging any confidential information from my report, she ended our discussion by requesting that I bring a friend or family member with me. In just a matter of minutes my life had been thrown into turmoil and my cancer journey had begun.

dreamy-teal-aqua-blue-nature-trees-kathy-fornal

My first time inside Calgary’s Tom Baker Cancer Centre was on a cold, dark November morning. Since it was my initial assessment, the team of oncologists had obviously chosen to schedule me early, before anyone else. I still remember how terrified I was, and yet how unexpectedly quiet and peaceful everywhere in the building seemed to me at that hour. For what felt like a long time, my mother and I were essentially the only ones sitting in the waiting room of the centre’s outpatient clinic. First, I was required to have a detailed consultation. I spoke with a nurse about my medical history, naturally there was an emphasis on any family history of cancer. We confirmed that there is a slight history of breast cancer and colon cancer on my mom’s side, but no actual cases of uterine or ovarian cancer.

Next, I was examined by one of the Baker Centre’s top pelvic cancer surgeons, Dr. Prafull Ghatage. Following my examination, we were assembled in one of the conference rooms with Dr. Ghatage and a team of other physicians. The seriousness of my situation began to register as I looked across the table at four of five white-coated medical professionals. Meanwhile, Dr. Ghatage explained that he wanted to perform surgery as soon as possible. This news was suddenly too overwhelming, especially considering the fact that just weeks earlier I had undergone a total abdominal hysterectomy. “I just had a hysterectomy and now I’m dying of cancer,” I tearfully blurted out.  “You’re not dying, I’ll inform you if you are dying,” a firm voice immediately responded. These rational words jolted me back to reality, and before I left I signed a consent form for a laparotomy—a highly specialized oncology procedure in which abdominal organs are removed, biopsied or repaired and a definitive diagnosis can be made.

DSC_0023

The relentless waves of panic and the constant upheaval that I felt during that first harrowing  month have gradually receded, at least enough to make my existence bearable. But even now, after years in remission, the sometimes terrifying uncertainty of my everyday life has remained. Some people are able to cope with the fear and uncertainty in this world by embracing one particular religious faith, however I’ve discovered that I am not one of them. At first, I thought that religious people would have a particular psychological advantage in dealing with cancer, but I’ve learned that this notion isn’t always true. Personally, I was raised in the Catholic faith but as an adult I have chosen not to attend church or practice the religion. Even without the many imposed traditions or the inherent sense of belonging, I have still been able to draw on spirituality to help me endure the life-shattering ordeal that I’ve been through. If you aren’t religious, it doesn’t mean that your cancer journey must be completely devoid of faith. I’ve nonetheless chosen to build a life on faith—faith in the power of good, faith in science, faith in healing, and faith in the possibility of miracles.

After a Cancer Diagnosis: Five Things You Need to Know

light nature sky sunset

Allow yourself time to grieve.

Allow yourself to cry, to feel numb, to be angry, or to feel however you’re feeling. These emotions hurt, but they are natural and normal. Grief is a person’s normal, healthy response to a loss. Understandably, I grieved after my father died, however I was surprised to find myself experiencing similar feelings when I was diagnosed with ovarian cancer. I discovered firsthand that the loss that triggers grief isn’t always physical. You can experience grief if you or a loved one are diagnosed with a major disease or face a serious illness. It’s common to grieve the future plans you had made, or the ways life will change. Remember there is no “right” way to grieve, everyone is different. Give yourself time to experience your loss in your own way. Also understand that during life’s most difficult times it’s important to make a commitment to take care of yourself emotionally, spiritually and physically.

Don’t let fear consume you.

Fear is one of my constant companions on this cancer journey, for over seven years now it has attempted to overcome me and prevent me from living the life that I want. Naturally, when I was first diagnosed with cancer and was undergoing months of treatment some extremely unsettling questions raced through my mind. Will the recommended treatment be successful or will I die? Will undergoing another major surgery followed by chemotherapy be too agonizing and unbearable? Now that my oncologist has informed me that I’m in remission, it’s the fear of my cancer recurring that I have to cope with on a daily basis. Practicing mindfulness helps me stay in the present moment and to accept that I can’t control certain outcomes. I’ve ultimately learned that faith can be an important factor in dealing with fear. I’m not religious, but like many I’ve chosen to build a life on faith—especially faith in the power of good to triumph over evil in this world.

terry-fox-determination

 

It’s ultimately your cancer journey.

One thing that’s become evident to me as a cancer survivor is that we all respond to cancer differently. Our response depends primarily on our own personality and past life experiences. How we deal with a life-threatening illness will differ according to our personal values and may also be connected to how we have responded to crises in the past. It must be acknowledged that cancer is extremely personal, so our response tends to be personal as well. With these facts in mind, I argue that no one has the right to tell me how to react emotionally to my cancer or to lecture me about how I should live my life after a diagnosis. For example, early in my cancer journey I was confronted by a couple of individuals who insinuated that I should not allow my illness to change my life. How could I have not changed? I’m not going back to the way I was before I had cancer. I see that as a terrible waste of all that I have been through.

You never know how strong you are.

When you are diagnosed with cancer you will have moments when you 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 resolute, 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 I never appreciated or properly acknowledged in myself. Subjected to the ultimate test, I’ve sometimes shocked myself with my capacity to overcome adversity and to confront physical pain and suffering.

Don’t be afraid to ask for help.

There’s a familiar proverb that states that it takes a village to raise a child. I think that this can be modified to assert that it takes a village to properly support a cancer patient. When I was diagnosed with ovarian cancer seven years ago, I was suddenly faced with a whole new array of complex needs. It was sometimes necessary, or in my best interest, to accept the assistance of my inner circle of friends and family members. For example, my mom was my primary caregiver following each of my three major surgeries. She would also accompany me to and from my appointments at the Tom Baker Centre and remain with me when they administered chemotherapy. Today most cancer patients, including myself, have access to social workers, psychologists, dieticians and other skilled professionals. Treating the whole person and recognizing that each patient has unique issues and needs have become firmly entrenched and are part of the philosophy of cancer care.

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.”

Are You Sure?

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

The Salt Eaters by Toni Cade Bambara

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

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

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

Chemotherapy-drip

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

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

Gratitude for Life’s Simple Pleasures

sunset-field-poppy-sun-priroda.jpg

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.

DSC_0052

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.

Doing Cancer My Own Way

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

— Charlotte Brontë, Jane Eyre

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

 

OLYMPUS DIGITAL CAMERA

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

 

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

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

 

simulator

 

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

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

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