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 spent 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. The memory will forever be seared in my mind, I was still in my pajamas and resting in my favorite chair in the living room. As I picked up the phone I tried to be composed, but in just a few seconds my heart was racing and I was consumed by a feeling of dread so intense that I could hardly breathe. In a calm voice the 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 medical information, she ended our discusion by requesting that I bring a friend or family member with me. In a matter of minutes my life had been thrown into turmoil and my cancer journey had begun.

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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 scheduled me early, before anyone else. I still remember how terrified I was and how unexpectedly quiet and peaceful everywhere in the building seemed to me at that hour. My mother and I were essentially the only ones present in the waiting room of the gynecology clinic. First, I was required to have a detailed conversation with a nurse about my medical history, naturally there was an emphasis on any family history of cancer. Next, I was examined by one of the Baker Centre’s top pelvic cancer surgeons, Dr. Prafull Ghatage.

Following my examination, my mother and I 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. Dr. Ghatage explained that he wanted to perform surgery as soon as possible. This news was overwhelming, especially considering that I had just undergone a total abdominal hysterectomy three weeks earlier that had given rise to a major cancer diagnosis. “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 voice immediately responded. These rational words jolted me back to reality, and before we left I signed a consent form for a laparotomy—a specialized procedure in which abdominal organs are removed, biopsied or repaired and a definitive diagnosis can be made.

 

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The relentless waves of panic and the constant upheaval that I felt during those early months would eventually recede, at least enough to make my existence bearable. But even now, after seven years, the vague, and sometimes terrifying, uncertainty of 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 might have a particular psychological advantage in dealing with cancer, but I’ve learned that this notion isn’t always true. For example, I was raised in the Catholic faith, but as an adult I have chosen not to attend church or practice the religion. Even without a sense of ritual or inherent 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.

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After a Cancer Diagnosis: Five Things You Need to Know

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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.

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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.

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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.”

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The Five W’s of Cancer

The moment I was diagnosed with cancer I entered a psychological realm where wanting to know everything about my disease alternated with fear and aversion. Once the initial shock wore off I realized that I would need accurate information in order to navigate my horrific, and sometimes terrifying, journey through ovarian cancer. Never in my life have I felt so simultaneously overwhelmed by an abundance of medial information and frustrated by a lack of it. This ambiguity of emotions is understandable in cancer patients, as they undergo treatment for some of the most complex and difficult to understand diseases within the field of medical science.

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 unique physical, emotional and psychological needs. I’m a journalism school graduate and I believe this has given me a better perspective than some patients when I’m confronted with information through online or traditional media.

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Whenever I read something pertaining to cancer I always keep in mind the Five W’s that I was taught when I was studying journalism.

Who?

Who carried out the research, and who funded them? If the Academy of American Poets or the League of Canadian Poets is telling you about a new study they funded showing that reading poetry is good for your health, it doesn’t mean that they’re wrong, but they have a vested interest. Knowing who is quoted in a story or who is commenting is also important. Stories often include comments from experts who weren’t involved in the study – these opinions have the power to help clarify how the results fit into the wider context, and whether they’re worth paying attention to. But still be aware of who’s commenting on the study.

What?

What did the researchers actually do? Was the study looking at cells in a dish, mice or patients? These are all crucial stages of testing a new cancer drug. New drugs can’t be tested in patients immediately – cell and animal studies are needed first to check if experimental treatments are safe, effective and worth further investigation. Keep in mind that in an ideal experiment only one thing will be changed at a time, so that you know any differences are because of that one change. In many cases it’s tricky, but not impossible, to try to pin down how much different variables affect cancer risk. Scientists can try to account for the things that cloud the picture, but there will always be gaps. And that’s why cancer research takes a long time, and needs to involve a lot of people.

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Where?

Oncologists and cancer experts aim to publish their results in journals, where their findings are scrutinized by others in their field – a kind of quality assurance called peer review. But oncologists share their work in other ways, particularly at conferences. Often these results are preliminary or don’t have as much information as would be in a published paper. In addition, much of the data is not yet peer reviewed. Unfortunately, these findings are often reported in the news with the same prominence, even though the results might be a long way from the finished article that is beng worked on.

When?

When was the study carried out, and how long did it run for? A week? A month? A year? The longer the better – long-term effects might be missed if you only look at a short timeframe. And if the study looks at people, are the data from the last few years, or from decades ago? An older study might have had more time to look at long-term consequences, but a more recent study could mean that the findings are more relevant to current lifestyle habits.

How Many?

How many subjects took part in the research? And who or what were those participants. Was it 10 mice? 100 patients? 1000? Generally, the more used, the more reliable the results are.

How much?

A recent headline, People who eat organic food are 25 per cent less likely to get cancer, sounds as though you had better eat organic if you want to significantly reduce your cancer risk. However, the headline uses what’s called a relative risk. The study of almost 70.000 volunteers found only a tiny 0.6% reduction in terms of absolute risk. It might also be important to keep in mind that people who buy organic tend to be richer, eat more fruit and vegetables, consume less meat and drink less alcohol.

 

In conclusion, I would like to emphasize that I don’t mean to condemn cancer research or the media where many crucial findings are reported. Most reporting will be accurate and responsible, and even when it isn’t it doesn’t mean that there’s malice behind any mistakes. Communicating science is extremely complicated, and it’s impossible for science journalists to be flawless all the time.

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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.

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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.

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Health Care for All

When I was first diagnosed with cancer in November 2011 I was like many Canadians, I was proud of our universal health care but I had never really been required to test it. I had never dealt with a chronic or life-threatening illness before. I’d never even been hospitalized for surgery or seen the inside of a cancer centre. My innocence of what’s involved in being treated for cancer was shattered almost literally overnight. It took three surgeries and several rounds of chemotherapy to force my disease into remission, along the way there were too many outpatient appointments, tests and scans for me to count. I’ve currently logged thousands of hours in hospitals and seen dozens of physicians and physicians in training, that’s enough to consider myself an insider when it comes to the basics of Canada’s health care system.

It is by no means a perfect system and I realize it has many flaws, but I would still defend it especially against the way that health care is delivered in the United States. “Regardless of political allegiance, Canadians are nearly unanimous that a universal health system is a good thing— for reasons of economics and social justice,” writes Andre Picard in Matters of Life and Death. Indeed, the role of Tommy Douglas in shaping publicly funded health care over half a century ago is celebrated and sometimes mythologized. Obviously, I have a reason to get more emotional over Douglas and his contribution than most Canadians. As a cancer patient I acknowledge his legacy as I go through my treatments and each time I use my Alberta Health card or red Tom Baker Cancer Centre card.

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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.

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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.

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