The Waiting Game

 

“Of all the hardships a person had to face none was more punishing than the simple act of waiting.”

Khaled Hosseini, A Thousand Splendid Suns

 

In this powerful quote Khaled Hosseini, the author of The Kite Runner and several other internationally acclaimed novels, speaks of the pain of waiting. Throughout my cancer journey waiting, along with uncertainty and fear, have been my constant unwelcome companions. Of course there have been the endless hours spent in doctor’s waiting rooms and waiting in diagnostic imaging departments for CT scans, MRIs and a multitude of tests. I can’t believe how accustomed I’ve become to these environments and to the monotonous routine that they now so strongly represent.

I close my eyes and I can visualize the waiting room chairs, the reception desk, sometimes a television for distraction, and always the tired and worried looks on the other patients’ faces. Some attempt to engage in small talk with other patients or with the caregivers who have accompanied them, others sit silently or try to read or distract themselves with electronic devices. My waiting time at the outpatient clinic at the Tom Baker Cancer Centre is typically half an hour to an hour. It’s common knowledge that Calgary is in dire need of a new cancer centre, as the Baker Centre is more than thirty years old and way over capacity with the volume of patients it now must serve.

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My memories of waiting for chemotherapy sessions in the late winter and early spring of 2012 are still extremely vivid in my mind. I can laugh now, but at my first appointment I was worried that some of the veteran chemotherapy patients might be able to tell that I was a newbie. They would ascertain that I looked too healthy and had all of my hair! When I arrived, I noticed that the people around me seemed to have many types and stages of cancer; what is more, a good number of them exhibited full heads of hair. After a short wait of approximately 15 minutes, a nurse led my mother and I into the Baker Centre’s large daycare treatment area. My heart beat faster as we reached my assigned space and I settled into a recliner by the window. The nurse explained what she was doing as she inserted my IV line and then attached some anti-nausea medication in preparation for the potent cancer-fighting drug, carboplatin.

As unpleasant as waiting for physical examinations and chemotherapy appointments can be, for many cancer patients it’s anticipating a future over which they have little control that seems so much more ominous and stressful. I live with the constant pressure of waiting for outcomes that I cannot completely control. When I was originally diagnosed with endometrial and ovarian cancer three years ago, I was referred to the Tom Baker Cancer Centre where my case was reviewed by the Gynecologic Oncology Tumour Board. This team of doctors and specialized pathologists reviews all new referrals to ensure correct diagnosis and to recommend the best treatment plan. Almost instantly I became the patient of one of Western Canada’s most renowned pelvic cancer surgeons, Dr. Prafull Ghatage.

hourglassMy first consultation with Dr. Ghatage now seems like a lifetime ago. In a few months I’m scheduled for another routine checkup at the Tom Baker Cancer Centre. It’s essential that I be monitored regularly for a possible recurrence or any signs of malignancy; ovarian cancer has a notoriously high recurrence rate. Many women with the disease face at least one recurrence within five years of their first diagnoses. Without resorting to an abundance of medical jargon, I’ve been diagnosed with stage IIIC2 adenocarcinoma of the uterus and stage IC adenocarcinoma of the ovary. As I await my next appointment on February 10, 2015, the encouraging news is that I’m currently in remission—at least I am to my knowledge—and my chances of a complete cure are better the longer I remain in this state. The Canadian Cancer Society defines remission as a decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body. According to Ovarian Cancer Canada, 80 per cent of women diagnosed with ovarian cancer will achieve remission.

However, it is unknown if the cancer will come back or how long before it comes back. These unanswered questions linger in every woman’s mind that has ever been diagnosed with cancer and all we can do is wait for the resolution. In the meantime, I’ve made my health my primary focus—a nutritious diet, an appropriate exercise routine and getting enough sleep have never been more important. Obviously I’m careful to take my daily medication; I’ve been prescribed the drug Megace (generic name megestrol), it has been known to reduce recurrence rates in uterine, ovarian and breast cancer patients. Finally, hope and my steadfast determination to live each moment of my life fully and completely remain my allies in this dreadful waiting game. “How much of human life is lost in waiting,” wrote the 19th century transcendentalist Ralph Waldo Emerson. As I continue to face the many realities of cancer in the 21st century I can strongly relate to this long ago observation.

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My Relationship With Food: Part II

My previous blog post introduced the topic of how being an ovarian cancer patient has influenced my relationship with food and transformed my attitude toward eating. I’ve always valued my relationship with food and I appreciate how it enhances the quality of my life. But in the spring of 2012 each day that passed only seemed to make my abdominal pain, nausea and other digestive symptoms worse. On May 11, 2012, I received my fifth round of chemotherapy, 72 hours later I was facing a life-threatening medical crisis—it had taken time to gradually materialize, but my aggressive cancer treatments had led to an extremely serious bowel blockage. Vomiting and in pain, I was transported to the emergency room through early rush hour traffic. It was a bright May morning when I entered the doors of Calgary’s largest medical centre. I had already been to the ER twice during my cancer treatments with similar complications, but this time my instincts told me that it would take a miracle or another surgery to save my life.

I was quickly readmitted to the gynecologic oncology unit, by this point I had formed a close relationship with many of the nurses and support staff. I could tell that many of them empathized with my setback and were hoping like me that I would somehow make it through such a terrible predicament. At first my doctors took a wait and see approach, they thought that perhaps with a little time and rest my bowel blockage might correct itself non-surgically. When my condition hadn’t improved after about a week in the hospital, a crucial decision was made, my doctors told me that I would no longer be able to consume any food by mouth! Even liquids were basically forbidden, I had to suck on ice cubes or take tiny sips of water to moisten my mouth. A certain degree of panic set in as I thought about the prospect of not consuming food, surgery also seemed more imminent.

PICC Image

Nothing had prepared me for the invasive medical procedures that I would endure in the coming weeks or for the length of my hospitalization. Forty-eight agonizing days elapsed, during which time I received virtually all of my nutrition through a large intravenous device called a peripherally inserted central catheter (PICC or PIC line). It was continuously hooked up to a large bag with total parenteral nutrition. TPN is a thick whitish liquid containing essential nutrients, about every twelve hours the nurses would come to hang a new bag of “food” and remove my empty one. It was during my hospitalization that I first met with a registered dietitian, a food and nutrition expert. Even when they don’t encounter a crisis as substantial as mine, the nutritional well being of cancer patients often requires consultation with a professional. In my situation, we discussed the specifics of a low fibre diet that I would be required to follow before I could resume a normal eating regimen.

PICC Nutrition

On June 18, 2012, a critical surgical procedure was skillfully performed. When I awoke in the recovery room I sensed that my crisis was at last resolved. Although only half-conscious, I was filled with elation as they informed me that the procedure to correct my obstruction had been successful. The primary cause was established to be scar tissue from my previous operations and now my digestive system was expected to function normally again. Most of all, I was comforted and reassured by the fact that my cancer had not metastasized to other regions of my body. Following my surgery, I spent a couple of more weeks in the hospital recovering and learning how to eat all over again. I was required to start cautiously with liquids and semi-solids such as soup, Jell-O, and pudding. When I was ready to try my first solid food, I commenced a strict low fibre diet, whole grains and the majority of fruits and vegetables were forbidden. My goal was to consume less than 10 grams of fibre daily and eat only foods with 2 grams or less. White bread, egg salad, chicken and low fibre cereals became some of my staples.

Two years after this ordeal I’m grateful that my ovarian cancer continues to be in remission, I’m just as thankful for the fact that I am able to consume a normal diet and enjoy the pleasures of eating. I become frustrated when I look around me and I witness people who don’t realize how important it is to eat properly—I see so many individuals who rush through meals without a second thought. “Oh, I’m too busy to cook,” they argue. “With my work schedule and social obligations, who has time to prepare a meal from scratch?” I would argue back that making time should be a priority—self-care and proper nutrition are essential for your long-term health and can’t be pushed aside without eventually facing the consequences. Ultimately you might discover, as I have, that cooking and dining are two of life’s greatest pleasures. Learning to cook can be enjoyable, and the shared experience of savouring a meal with friends or loved ones considerably enhances your quality of life. As for me, I’m determined that even if my cancer returns I’ll never let it destroy me relationship with food.

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It’s All So Trivial: Emotional Isolation and Cancer Patients

loneliness

In my introductory blog post, Survivorship 101, I defined the concept of cancer survivorship. Survivorship refers to the physical, psychological, social, and economic issues of living with cancer, from diagnosis until the end of life. In this post I would like to delve deeper into some of the social and psychological aspects of having cancer. For example, a major cancer diagnosis 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.

Like many people dealing with cancer I’ve sometimes felt isolated from those not going through a similar experience. Relatives, friends and acquaintances mean well, but they are unable to fully empathize or to understand certain aspects of what I am going through. Many cancer survivors will attest to the fact that there are times 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.

loneliness bench

According to the Alberta CancerBridges team, such deep-seated feelings of isolation have been well documented in the cancer care literature. There is even a term that has been created to describe this experience—it’s known as survivor loneliness. Last summer I watched a rare long-term survivor of ovarian cancer address the crowd at an Ovarian Cancer Canada fundraiser. I admire her ability to speak eloquently in public about her decade long struggle. Throughout her speech she had nothing but praise for her friends and family, I could sense that she is profoundly grateful for the unconditional love and support that they have given her over the years. But paradoxically, the former nurse also characterized her personal battle with cancer as a “long lonely journey.” Survivor loneliness can take many forms and occur for a number of reasons. It’s typically felt as a profound sense of isolation from the people around you. As one battles cancer, this sense of isolation can arise from a feeling that you are alone in your awareness of mortality.

Since my cancer diagnosis two 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 coworker or their favorite esthetics studio is getting ready to raise its prices.

Cancer experts and psychologists generally agree that the most effective way to combat isolation and survivor loneliness is to connect with other people who are undergoing a similar ordeal. There are numerous support groups and organizations throughout Canada specializing in the extremely complex social and emotional aspects of cancer.

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Cancer shakes your illusions of immortality. It robs you of the sense of invincibility and innocence that once protected you. But what replaces that feeling is infinitely more valuable: a new awareness and a mature understanding of both life and death.

From Picking Up the Pieces: Moving Forward After Surviving Cancer
by Sherri Magee and Kathy Scalzo

Information Please

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 gynaecologist’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.

I read the words endometroid adenocarcinoma for the first time, I didn’t comprehend until much later that I had learned my enemy’s name. Derived from the words “adeno” meaning pertaining to a gland and “carcinoma” meaning a cancerous tumour, the disease is a formidable adversary. One organ that is commonly affected includes the lining of the uterus, or endometrium. Adenocarcinoma is even more frequently diagnosed in the colon or the lungs. My surgical pathology report contained many confusing and ominous terms. I never thought of my reproductive organs as a possible death sentence, but that’s what the report seemed to be implicating. References to yellowish tan neoplasm and a uterine tumour measuring 11 centimetres at its greatest dimension both sickened and terrified me! At another point I started to pity my tiny right ovary. To make the personification complete, I’m sure she fought a valiant battle, but she was strangled by a separate tumour of about 7 centimetres.

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I’ve come a long way since I first read that menacing pathology report nearly a year and a half ago. My ability to deal with medical information and to collaborate with my health care team has improved since then. Today, I offer the following advice to cancer patients and their caregivers. In a broader sense these recommendations could probably apply to anyone facing a serious health crisis.

Knowledge is Power

You are the most important member of your cancer care team and it’s essential to actively participate in your care. Pay close attention throughout the process of your care and participate fully in discussions with your oncologist and other medical specialists. Don’t hesitate to raise any concerns with your oncologist or with other appropriate health care professionals on your cancer team. If something doesn’t seem right or you sense that certain issues aren’t being addressed speak up!

Find the Right Balance

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 realm of medical science. Personally, I’ve discovered that tension and anxiety occur unless a balance of information about my cancer is achieved (not too much and not too little). In my opinion, this ideal equilibrium will vary. It also depends largely on an individual’s psychological makeup and is more often than not impossible to maintain constantly.

Use Only Reliable Sources

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 appreciate that the most specific and reliable information comes from my oncologist and the related medical professionals on my cancer care team. When I access printed materials or the abundance of online resources that are available, I am highly selective. I’d like to conclude this post by listing a few prominent organizations that I recommend.

The Canadian Cancer Society   http://www.cancer.ca

The American Cancer Society   http://www.cancer.org

CancerNet  http://www.cancer.net/cancer-types/uterine-cancer

 Ovarian Cancer Canada   http://www.ovariancanada.org

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Survivorship 101

My health had always been tremendously good, and then one afternoon in November 2011 I received an unexpected diagnosis of both uterine and ovarian cancer. In hindsight words such as devastating, terrifying, and life-altering seem inadequate to describe the magnitude of that experience—my daily existence was shattered. Sometimes it’s still as if I’m trapped in an appalling dream, a nightmarish reality that to date has encompassed three major abdominal surgeries and five cycles of chemotherapy. As with countless other cancer survivors I have asked “Why me?” while I’ve struggled to find anything positive about living with such an affliction. I have accepted the likelihood that my life may never be exactly the same; I must adjust to a “new normal” as day by day I contend with the consequences of an insidious, spiteful, and often fatal disease.

In this blog I will be writing about various aspects of my cancer journey. I have chosen to call it The Teal Diaries, since teal is the colour used to represent awareness of gynecological cancers. While pink ribbons are strongly associated with breast cancer, significantly fewer people realize that ovarian cancer survivors, and those who wish to support them, wear teal ribbons. If there is less public awareness regarding ovarian and endometrial  cancer, I suspect that it’s because they are both less prevalent and have a significantly higher mortality rate than breast cancer.

I’ve waged my relentless battle for over a year now, I currently seem to have the upper hand and my doctors indicate that they are cautiously optimistic regarding my prognosis. Since the beginning of my cancer experience there have been moments of epiphany and numerous opportunities for personal reflection. Being that this is my initial blog post, I want to share a few of the survivorship lessons that I’ve experienced over the past fourteen months. According to professionals in the cancer field, survivorship is living with and beyond cancer. Survivorship covers the physical, psychosocial, and economic issues of cancer, from diagnosis until the end of life. This is what I’ve learned so far.

You never know how strong you are until being strong is the only option you have left.

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. As one of the approximately 17,000 Canadian women living with ovarian cancer, I obviously know firsthand how it impacts a life. For survivors there is tremendous emotional pressure, along with social and financial turmoil.

There are moments when you have the impression that your world is spinning violently out of control. The fundamental paradox is that I’m often able to 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. “Okay cancer, you ruthless bastard, attack me with all the intensity you’ve got! I will still transcend you and the pure malevolence that you represent,” I sometimes tell myself. Some pundits would consider this type of resolve impressive, especially as demonstrated by a socially introverted, physically petite woman, such as myself.

Appreciate the flowers in your own backyard.

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I reached an unparalleled low physically and emotionally last year, during the spring of 2012. By May there were potentially life-threatening complications due to my rigorous cancer treatments. Vomiting and in pain, I was transported to the emergency room through early rush hour traffic. It was a bright May morning when I entered the doors of Calgary’s largest medical centre and was admitted suffering from a bowel blockage. I acknowledge that at first I literally wanted to die rather than face what was happening. Nothing had prepared me for the invasive medical procedures that I would endure in the coming weeks or for the length of my hospitalization.

Forty-eight agonizing days elapsed, during which time I received virtually all of my nutrition through a peripherally inserted central catheter (PICC or PIC line). On June 18, 2012, intestinal surgery was skillfully performed. When I awoke in the recovery room I sensed that my crisis was at last resolved. Although only half-conscious, I was filled with elation as they informed me that the procedure to correct my obstruction had been successful. The primary cause was established to be scar tissue from my previous operations and now my digestive system was expected to function normally again. Most of all, I was comforted and reassured by the fact that my cancer had not visibly metastasized to other regions of my body.

My discharge from the hospital ultimately took place on a balmy summer afternoon; the clothes I had worn nearly two months earlier felt hot and loose fitting. I was so weak from my ordeal that I struggled to walk just 10 or 20 metres, but I was in awe as I observed how the seasons had changed and nearly everything had been transformed. I can still remember the blissful journey home and my sense of anticipation during that short, but very emancipating, commute. Even the air filling my lungs was like a breath of freedom.

Upon arriving at the small bungalow where I live, something magical occurred. My eyes surveyed the backyard and the unexpected sight of poppies in full bloom completely overwhelmed me. It was as if I were seeing them for the first time. I remain inspired by their exquisiteness, vaguely encouraged by the realization that their brilliant orange petals and intricately designed purple centres will never appear ordinary to me again. I’m certain that from now on, I’ll be eagerly awaiting the phenomenal appearance of the poppies each June!

Learn how to embrace the new pretty.

There are literally thousands of magazine articles, journal studies and online resources devoted to the topic of sexuality and women’s cancers. How a woman copes and deals with the changes to her body are unique for each survivor, of course such factors as age and relationship status come into play. Studies have confirmed that the most prevalent issue for those diagnosed with uterine or ovarian cancer is a sense of profound loss. Psychologically I continue to mourn the demise of my reproductive organs and the loss of what I always perceived as an impeccably strong and healthy body.

Throughout my cancer ordeal I have felt moments of contempt, occasionally mixed with rage. I find it easy to despise a culture that is inclined to objectify women—placing intense pressure on us to possess a perfect body. I’ve become acutely sensitive to the media, the advertising industry and to what I believe are ridiculous and superficial standards of female beauty.

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There have been circumstances when I’ve waged war using humour or an “in your face” attitude. During my convalescence from one of my cancer surgeries I recall being engaged in a discussion with my mother while sorting through a stack of mail. I paused as I unearthed a catalogue for a major Canadian department store, cringing at the sight of the cover. Predictably it was flaunting an image of a model with an unblemished face and body. The New Pretty, the caption breathlessly announced. All of a sudden I grinned mischievously, as in one defiant move I turned and flashed my scarred and stapled abdomen. “I’ll show them the new pretty,” I boldly declared.