Lessons in Survivorship: The Wisdom of Cancer

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As I’ve mentioned before in this blog, self-assessment or the need to reprioritize your life is a virtually inevitable part of being a cancer survivor. This month marks the fourth anniversary of my diagnosis. My gynecologist informed me of my disease on November 3, 2011, and this will always remain one of the most significant days of my life. How can one explain such a profound and life-altering event to a person who has always been relatively healthy? Some psychologists and experts have observed that cancer patients divide their lives into two parts or that we are figuratively born twice.

Since the beginning of my cancer experience there have been moments of epiphany and numerous opportunities for personal reflection. I want to share a few of the survivorship lessons that I’ve come to terms with over the past four years. 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 some of what I’ve learned so far.

If something isn’t going to matter or have any impact five years from now, I probably shouldn’t spend time worrying about the issue. Not until my diagnosis with cancer did I realize how much time I spend worrying about the future or regretting the past. I believe more than ever in the importance of focusing my attention on the present. I can live each moment only once, so why waste that precious moment in a state of self-induced stress or anxiety? As for the direction of my life, I’ve ultimately gained a clearer perspective about what my priorities are—I’m proud of my ability to concentrate on the values and relationships that I know are the most significant.

I tend to enjoy my own company more than I enjoy being in groups or socializing with other people. I’ve accepted that I’m an introvert and there’s nothing wrong with the way I am, it’s not necessary for me to apologize. I lament the fact that my personality type is so frequently misunderstood and that introversion is often confused with being shy. Shyness is the fear of negative judgment, and introversion is a preference for quiet, minimally stimulating environments. I become the most upset when I’m accused of disliking people in general and of lacking the skills to be an extrovert. The truth is that introverts comprise at least one quarter of the population and we continue to make our own unique contributions to society.

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It’s counterproductive to surround myself with people who don’t want to be with me or don’t value me. I’ve reached a point on my cancer journey where I find it’s no longer necessary to impress anyone. If they like me the way I am, that’s fine. If they don’t, it’s their loss.

I’ve definitely developed zero tolerance for having toxic people in my life.

Some Signs of a Toxic Person

Nothing you can say or do is good enough.
They comment on the smallest flaw or perceived imperfection.
They drag up your past and won’t allow you to grow or be different.
They act like they are fabulous and never make mistakes.
They leave you feeling guilty and ashamed of who you are.
They are critical, controlling and don’t think about your needs.
They leave you feeling beaten, wounded, battered bruised and torn.
They violate your boundaries and never respect no.
They don’t care about your feelings and they like to see you suffer.
It’s always about them and what they think and want and feel.

I rarely use the word someday and I try to avoid talking about future plans in vague or uncertain terms. Most people I know take the future for granted and think of it as something that will always be there for them. In 2012 I spent over a month and a half on Unit 42 at Calgary’s Foothills Hospital. This women’s cancer ward is predominately a place of bravery, triumph, heartbreak and tears. When I looked into some of the other patients’ eyes, I could see them begging for a future, and I understood that they would do almost anything for the gift of just a few more months in this world. As a cancer survivor I’ve discovered how precarious tomorrow really is and that you can’t always depend on someday.

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I’ve learned it’s not wrong to put my own needs first and that it’s essential to take care of myself physically and emotionally. After undergoing five cycles of chemotherapy and three cancer surgeries within eight months—I’m finally treating my body with the respect it deserves. We’re all pressured daily to move faster, do more, sleep less, earn more money and obtain that promotion. Within the cancer community, I hear the term “self-care” a lot. I don’t know if I’m fond of the expression, but it’s a concept I believe in strongly, I consider it particularly relevant for women with cancer. As women we are socially encouraged to give everyone else our time, energy and attention—but often feel conflicted or guilty when we stop long enough to take equally thoughtful care of ourselves.

In a League of Your Own: Why Every Cancer Patient is Different

I recently received some grim news regarding a close acquaintance with advanced breast cancer. After achieving about one year of remission, her doctors have informed her that her cancer has metastasized to her lungs. Apparently her current prognosis is extremely poor and oncologists have indicated that her disease is expected to progress to the terminal stage. I have to acknowledge that I have a certain degree of difficulty coping with circumstances such as this. Psychologically I accumulate unnecessary anxiety as I compare myself to other cancer patients. When I hear of bad outcomes, I keep asking myself if I’ll be next.

One of the psychological aspects of having ovarian cancer is fear of recurrence. Although I’ve been in remission for about two years now, I remain alarmed that when my cancer was diagnosed it was fairly advanced. The statistics reveal that recurrence rates are notoriously high for my type and stage of cancer. Throughout my personal cancer journey I’ve noticed that this fear of recurrence is heightened by another phenomenon, the tendency to compare my cancer to other people’s experience with the disease. For example, I’ll sometimes remind myself that if my disease follows the path that it does with most women I’ll encounter at least one recurrence within five years of my initial diagnosis.

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There are few analogies that can accurately convey such feelings of dread to those who haven’t experienced them. Some cancer survivors have compared living with the disease to crossing a battlefield and watching your comrades die gruesomely while you dodge the bullets. Personally there have been moments when I’ve felt a sense of doom, it’s as if I’m a death row inmate, but with no certainty of when my execution will actually occur.

I have some extremely important advice to give to myself and to anyone else being treated for cancer.

1. Resist the temptation to compare the disease in your body to what is happening to other people fighting cancer, even if your condition seems highly similar.

2. Don’t dwell on statistics or the possibility of recurrence.

For instance, most women with ovarian cancer do have at least one relapse within five years of being diagnosed, but that standard rate of recurrence won’t necessary happen to me. The reality is that medical science has proven that all cancer patients are unique. What’s more, because cancer statistics are based on large groups of people, they cannot be used to predict exactly what will happen to you. Everyone is different. Treatments and how people respond to treatment can differ greatly. A well-known American cancer survivor, Joanna Montgomery, chronicles her experiences of treatment, motherhood and marriage in a personal blog called It’s Cancer, Baby. As Montgomery heavily underscored in one of her online articles, we are all individuals.

“The truth is that every single person’s cancer is different —even those diagnosed as the same type and stage —because that cancer exists in a unique human body unlike no other, with a unique life history and genealogy. I’ve met people with cancer of a lesser stage than mine who didn’t make it, while I’ve just as frequently met survivors who dealt with higher stages of cancer decades in the past and are still going strong. There’s no algorithm that will determine which of us will make it and which of us won’t. There are endless factors at play, and cancer is unpredictable and constantly morphing.”

The stress and anxiety generated from trying to predict what will happen to you or from scrutinizing other cancer patients might actually be detrimental to your health and the healing process. Medical science acknowledges a connection between our thoughts and emotions and certain physical aspects of healing, such as our immune system. The power of the mind-body connection has been widely accepted by mainstream medicine since the 1960s or 1970s. During those decades, a great deal of research in the field of biofeedback and self-regulation showed that human beings could learn to control many physiological functions. Even those ones that had previously been thought involuntary, such as heart rate and blood pressure, were found to be at least partially under our control. A number of pioneering studies drew on relaxation, meditation and yoga.

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The power we possess over own bodies and our personal health and the case for each of us being a unique biological organism was also established in a groundbreaking book entitled Mind as Healer, Mind as Slayer. In 1977, this book by Dr. Kenneth Pelletier helped to inspire widespread interest in mind-body interactions. Pelletier presents a variety of compelling evidence that the mind is a major participant in illness and that the mind can be a major factor in health as well. The majority of his case studies focused on serious chronic diseases, including heart disease and cancer.

So my recommendation if you are fighting cancer is to maintain faith in your body’s ability to heal itself. Even more importantly remember that your cancer journey is unlike anyone else’s and that your outcome may be radically different from those in similar medical circumstances. You are special, your body and spirit are both unique, so don’t assume you can predict the course your cancer will take simply by observing the disease in others.

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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The Blame Game: Guilt and Cancer

One of my New Year’s resolutions for 2014 is to more effectively manage the guilt or shame that I sometimes feel concerning my cancer. It seems unfair considering all the other unpleasant emotions that cancer triggers, but guilt in its various forms is a constant enemy waiting to attack cancer survivors and their caregivers.

It’s been well documented that many cancer survivors have feelings of shame or guilt, particularly around the notion that they may have played some part in causing their cancer. Certain cancers, for example lung cancer, have especially strong stigmas attached to them in this regard. “He smoked heavily, so what did he expect?” When it comes to cancer we often subtly, or not so subtly, blame the person for his or her disease. Friends, family members or strangers often do this unwittingly, in an attempt to rationalize a painful reality and to cope with it better themselves. Human psychology being what it is, whenever we can construct an explanation for something, it makes us feel a little better. Experts, such as renowned scientist and author Jon Kabat-Zinn, emphasize that blame only robs an individual with cancer of the present by directing their attention on the past—it undermines them when they most need to focus their energies and face the reality of having a life-threatening disease.

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While gynecological cancers don’t involve the same degree of stigma as lung cancer or some other forms of the disease, I’ve still experienced times when I’ve felt that I might be to blame for my illness. Leading up to my diagnosis, I was having symptoms that could indicate uterine and/or ovarian cancer and my doctor recommended surgery. At first I was somewhat hesitant due to fear and denial of my situation. I had never been hospitalized or had any type of surgery before, now I was being informed that I should have a total abdominal hysterectomy as well as the removal of my right ovary. My gynecologist had to “twist my arm” to a certain degree. I ultimately consented to the procedure when I realized that it was in my best interest. What would the outcome have been if I had chosen to have the operation sooner? Would my endometrial cancer be less advanced, lower than the stage III that I am currently diagnosed with? Would it have had time to spread to my lymph nodes and affect my right ovary?

There is no way to determine these things for certain, but I do regret my hesitancy to take action. Everyone has done things that they wish they hadn’t. My argument is that there is a difference between taking responsibility for the consequences of actions and feeling like you deserve to be blamed. It may be true in some cases that our lifestyle or health care choices increase the odds of getting cancer or contribute to cancer progression. No doubt in such circumstances changing certain behaviours may improve your health. However, allowing yourself to absorb blame and feel shame will almost certainly make matters worse. Instead, it’s better for cancer survivors not to let shame and guilt keep them from moving forward, getting the support they need and deserve, and living in a healthier way. Shame and guilt are unnecessary burdens to carry. From everything that’s known about the emotions and health, acceptance and forgiveness are what we need to cultivate and enhance healing, not self-condemnation and self-blame.

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This having been said, there are numerous other ways in which guilt manifests itself in the lives of cancer survivors. Guilt takes sinister forms for us, like feeling shame for the envy we feel about those who are in good health; feeling guilty about the disproportionate amount of attention we receive, and even guilt about surviving cancer when so many others have not. I remember feeling guilt-ridden when I was undergoing cancer treatment and unforeseen complications occurred. My condition ultimately caused me to spend over a month and a half in Calgary’s Foothills Medical Centre. As my primary caregiver, my mother had her life completely turned upside down. Although she is semi-retired, she took a leave of absence from her part-time job and rearranged her daily schedule to visit me. My brother also took some hours off work at the law firm where he practices. Suleika Jaouad, a young American fighting leukemia, describes herself in similar circumstances:

“I feel guilty when I start feeling sick or get a fever. I want to apologize, for I know I will soon make the life of my loved ones hell. My mother will have to drive four hours in the middle of the night to take me to the hospital in New York City. Family will have to take sick days from work. After long days at the office, my boyfriend will spend night after night sleeping between two hospital chairs. My father will “hold down the fort” at home (this translates to lonely nights spent worrying by himself and feeling very far away from my hospital room).”

Finally, as I’ve alluded to, some cancer patients experience the discomfort of what is termed survivor guilt. I’m aware through various sources that I’ve outlived several of my former cancer ward roommates. Perhaps it’s only human nature to occasionally wonder why I’ve been fortunate enough to achieve remission, when so many women diagnosed with my form of cancer have lost their agonizing battle.

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For more information regarding guilt and cancer or to seek professional advice contact the psychosocial oncology department at your regional cancer centre or reach out to other cancer resources in your community.

God Bless the Child

When I go to appointments at the cancer centre I notice that I’m surrounded by women in my own fortysomething age range. However, many of them are not patients themselves, they are there as caregivers and are accompanying a cancer stricken elderly parent. Sometimes as I walk in with my support person, my healthy and totally independent 72-year-old mother, I feel bitter and confused at our obvious role reversal. All at once I’m aware of how much the relationships in my life have changed since my diagnosis. Cancer has made me more dependent on family members, a multitude of health care workers and a number of government agencies. Throughout my ordeal there have been lonely days when I’ve yearned for a larger family or an abundance of close friends. Above all having a chronic illness has shown me what it’s truly like to be forced to rely on other individuals and revealed to me who is willing to stand by me in my time of greatest need.

Sometimes music helps me to deal with certain emotions that I’m feeling. Well before I was diagnosed with cancer or felt its harsh social and financial impact, God Bless the Child by the legendary Billie Holiday was one of my favorite songs. But lately both the powerful lyrics and her exquisite delivery keep going through my mind. God Bless the Child extols self-reliance while it condemns those who ignore us, repudiate us or treat us as inferior when we are unable to be self-sufficient. In her autobiography Lady Sings the Blues Holiday indicated an argument with her mother over money led to the song. Apparently during the argument she said the line “God bless the child that’s got his own.” Anger over the incident led her to turn that line into a starting point for a song, which she worked out in conjunction with Arthur Herzog. In his 1990 book Jazz Singing, Will Friedwald describes the work as “sacred and profane” as it references the Bible while indicating that religion seems to have little or no effect in making people treat each other better. Sadly, Billie Holiday was only 44 when she died—she had fought a long, terrible battle with alcohol and drug addiction.

God Bless the Child

Billie Holiday and Arthur Herzog Jr.

Them that’s got shall get
Them that’s not shall lose
So the Bible said and it still is news
Mama may have, Papa may have
But God bless the child that’s got his own
That’s got his own

Yes, the strong gets more
While the weak ones fade
Empty pockets don’t ever make the grade
Mama may have, Papa may have
But God bless the child that’s got his own
That’s got his own

Money, you’ve got lots of friends
Crowding round the door
When you’re gone, spending ends
They don’t come no more
Rich relations give
Crust of bread and such
You can help yourself
But don’t take too much
Mama may have, Papa may have
But God bless the child that’s got his own
That’s got his own

Mama may have, Papa may have
But God bless the child that’s got his own
That’s got his own
He just worry ’bout nothin’
Cause he’s got his own

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Billie Holiday