Tag Archives: cancer

Living Every Moment: Looking Forward to 2019 and What Lies 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, as she 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 that have been given 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.”

Leave a comment

Filed under cancer psychological impact

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.

newspaper

 

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.

IMG_0221

 

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.

Leave a comment

Filed under cancer research

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.

Leave a comment

Filed under cancer psychological impact

New Year’s Promises

I don’t generally believe in the tradition of making New Year’s resolutions, but I’ve still chosen to make some promises for 2018. I’ve learned that the most important promises are the ones that I make to myself, changes I initiate in an effort to improve the quality of my life or to help nurture a sense of purpose.

I’ll begin by taking a close look at some of my relationships. Many experts argue that the most important choice you’ll ever make is the people you surround yourself with. Since my cancer diagnosis I’ve basically developed zero tolerance for having toxic people in my life. In 2018 I promise to do all that I can to eliminate the power these individuals exert over me. There are some obvious signs of a toxic person and you’ll generally recognize it when you are in such a relationship. Here are some of the common red flags:

  • 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.

If you notice these signs, it’s best to cut the person out of your life completely or to at least keep them at a distance. Such individuals are capable of inflicting serious emotional and psychological harm, especially if you are in frequent contact with them over a prolonged period of time.

 

IMG_0091

 

i hear a thousand kind words about me
and it makes no difference
yet I hear one insult
and all confidence shatters

focusing on the negative

I can definitely relate to this poem which appears in the collection The Sun and Her Flowers by Rupi Kaur. I promise to be less critical of myself and to focus more on why I am a special and worthwhile human being. I promise to focus on my positive qualities and the valuable contributions that I am able to make while I’m in this world. My battle with cancer has revealed to me that people often won’t love and respect you until you choose to love and respect yourself.

Finally, I promise to be more mindful in my day to day living. I’ve discovered that one of the best ways to quiet my mind and focus my attention is a technique called mindfulness. The renowned scientist and author Jon Kabat-Zinn pioneered using this method with cancer patients and other groups at the University of Massachusetts Medical School. Mindfulness is basically just a way of paying attention, a way of awakening our minds and being present in the here and now. With principles found in Buddhism, mindfulness teaches us to live the moments contained in each day rather than focusing on what might lie ahead.

Acceptance and letting go are crucial components of mindfulness. A philosophy of mindfulness encourages us to come to terms with our life, even difficult experiences such as a cancer diagnosis. Acceptance means seeing things as they actually are in the present. Mindfulness doesn’t require that you have to like your situation—you don’t necessarily have to assume a passive attitude toward suffering or life’s unfairness. However, you must come to terms with things as they are and acknowledge them, whether it’s a diagnosis of cancer or the possibility of its recurrence.

Leave a comment

Filed under Uncategorized

Why You Should Read When Breath Becomes Air

I highly recommend reading Paul Kalanithi’s bestseller, When Breath Becomes Air, especially if you’re dealing with a cancer diagnosis. At the age of 36, on the verge of completing a decade’s training as a neurosurgeon, Kalanithi was diagnosed with inoperable lung cancer. One day he was a doctor treating the dying, the next he was a patient struggling to live. When Breath Becomes Air is a life-affirming reflection on facing our mortality and on the relationship between doctor and patient. I was often mesmerized by the author’s writing skills, almost a little envious that he could be both a talented physician and such an outstanding creator of non-fiction. There are passages in the book where Kalanithi perfectly captures what it’s like to suddenly be living with cancer.

“Severe illness wasn’t life-altering, it was life-shattering. It felt less like an epiphany—a piercing burst of light, illuminating What Really Matters—and more like someone had just firebombed the path forward.”

Breath-1

Jocelyn P. Newark, R.N. talks with Dr. Paul Kalanithi at the Stanford Hospital and Clinics in February 2014.

I was also struck by a section in which Kalanithi expresses his desire to make the most of what time he has left. One frustrating irony for many of us with cancer is that the physical limitations of the disease don’t allow us to engage in fast paced or frenzied activity.

“Time for me is now double-edged: every day brings me further from the low of my last relapse but closer to the next recurrence—and, eventually, death. Perhaps later than I think, but certainly sooner than I desire. There are, I imagine, two responses to that realization. The most obvious might be an impulse to frantic activity: to “live life to its fullest,” to travel, to dine, to achieve a host of neglected ambitions. Part of the cruelty of cancer, though, is not only that it limits your time; it also limits your energy, vastly reducing the amount you can squeeze into a day. It is a tired hare who now races. And even if I had the energy, I prefer a more tortoiselike approach. I plod, I ponder. Some days, I simply persist.”

As a neurosurgeon, the author is able to examine the doctor-patient relationship from both sides. His illness also helps him to assess his values, including some of the ultimate objectives of medicine and those who practice it. A dying Kalanithi writes eloquently about his profession and why he chose to dedicate himself to such a demanding field.

“The physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.”

“Our patients’ lives and identities may be in our hands, yet death always wins. Even if you are perfect, the world isn’t. The secret is to know that the deck is stacked, that you will lose, that your hands or judgment will slip, and yet still struggle to win for your patients. You can’t ever reach perfection, but you can believe in an asymptote toward which you are ceaselessly striving.”

kalanithi.interior-ata-photo---suszi-lurie-mcfadden

Dr. Lucy Kalanithi and Dr. Paul Kalanithi with their daughter, Elizabeth Acadia.

When Breath Becomes Air is a heartbreaking and ultimately beautiful reflection on the meaning of life as well as our own mortality. What makes life worth living in the face of death? What do you do when the future, no longer a ladder toward your goals in life, flattens out into a perpetual present? These are the issues that many people with cancer are confronted with and that Kalanithi writes about so passionately and eloquently.

“I began to realize that coming in such close contact with my own mortality had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.”

Paul Kalanithi died on March 9, 2015, surrounded by members of his large and devoted family. While mourning her husband, Kalanithi’s wife helped to see his manuscript through to publication. Thanks to When Breath Becomes Air, those of us who never met the young doctor will both lament his death and benefit from his extraordinary life.

Leave a comment

Filed under Uncategorized

Five Tips for Communicating with Your Oncologist

Know Your Rights

You have a right to be treated with dignity and respect by hospital staff and by all members of your oncology team. Every cancer patient should be provided with complete and accurate information regarding their condition, including their prognosis. The medical professionals heading your cancer care team have a responsibility to explain your diagnosis, treatment options and other information in clear understandable terms.

Ultimately you have a right to be an active participant in your treatment plan, it’s your disease and your body. It’s your right to either consent to treatment or refuse a procedure suggested by your oncologist. For example, you can refuse to sign a consent form if you feel everything hasn’t been explained clearly or you can cross out part of a consent form that you don’t want applied to your care. However, remember that if you do refuse a treatment your oncologist is required to explain to you the medical consequences of your decision.

Doctor's Touch

 

Recognize Your Responsibilities

It’s 2017 and it’s your responsibility to be active in your care and to advocate for yourself. Just a generation or two ago doctors were like gods in white coats, you didn’t dare question their authority and the fact that they had graduated from medical school meant that they were in control of the decision making. Patients are no longer passive or expected to behave like children or second-class citizens in a doctor-patient relationship. Today, the treatment of cancer and other life-threatening diseases is a collaborative process. You should do your best to be well informed and to ascertain the benefits and risks of each procedure or treatment offered to you.

Many cancer patients, including myself, have discovered that the level of responsibility put on us is quite high. We are responsible for adhering to a complex treatment regimen proposed by our oncology team. Treatment as an outpatient generally includes chemotherapy, radiation and regular follow-up appointments. Keeping track of all these scheduled procedures, medications and other detailed instructions can sometimes make an individual feel overwhelmed. If this happens, don’t be afraid to ask for help or to inform your family and your professional cancer care team.

 

Come Prepared

If you’ve recently been diagnosed with cancer, chances are your mind is spinning and you have literally dozens of questions that you feel you need to ask your oncologist. Where do you begin and how do you best prepare for an appointment? I recommend composing a list of questions and placing the ones that you think are the most important fist. As a patient, you’re entitled to ask your health care providers anything, in that sense, there are no right or wrong questions. However, being prepared will help you get more out of your interaction with your health care providers.

Here are a few of the most essential questions that you might need to go over with members of your oncology team.

Can we please review the next step in the plan?
Why are we doing these tests?
Why am I receiving this treatment?
What are the side effects of this medication?
How effective is the treatment?
Please explain how the treatment will help.
Why do you think that this is the best treatment for me?

clh-tom-baker

 

Acknowledge That Doctors Are Human

When talking with your oncologist, you should always remember that you’re dealing with a human being, doctors are not gods or saints. Yes, they have specialized medical knowledge and unique and difficult to acquire skills, but that doesn’t mean they can’t make mistakes or feel emotions. Studies have revealed that anxiety and depression are equally prevalent in the medical profession as in the general population and more worryingly, addiction and suicide rates are actually higher than the general population.

Physicians are still cultured to show no weakness, that vulnerability is a sign of incompetence. Although medical professionals encourage patients to seek help, admitting that they themselves sometimes encounter physical or emotional issues can be seen as a character flaw. Remember that your oncologist is a human being in a highly demanding and extremely stressful profession.

 

Value Honesty

Even before my cancer diagnosis five and a half years ago I understood that honesty is one of the central features of the doctor-patient relationship and that without honesty there can be no trust.

Still, doctors have this nasty habit of asking a lot of questions. Many of their inquiries make us uncomfortable or self-conscious, so we sometimes bluff. Here are a few of the most common issues that patients are dishonest about.

Many patients lie about the medications they are taking and whether they are taking them as prescribed.
Some patients are deceitful about whether they smoke.
Patients are often hesitant to discuss how much alcohol they consume.
People will often tell their doctor that they exercise regularly and eat a healthy diet, but not adhere to these practices.
Occasionally a cancer patient will lie when they experience pain or other possible symptoms of recurrence in the hope that their oncologist won’t find anything wrong.

Leave a comment

Filed under cancer doctor-patient relationship

Finding the Resilience to Face a New Year

This is the sixth New Year that I’ve celebrated since my cancer diagnosis, and each one brings with it a mixture of hope, fear and uncertainty. For many cancer survivors watching everyone plan for the future is difficult, it can produce mixed emotions and make the dawn of a new year extremely challenging.

That’s why I’m not going to use this blog to give a lecture about New Year’s resolutions or to suggest that you make elaborate promises to yourself. I realize that living with cancer often renders such gestures trivial and that your life is probably being planned week-by-week or month-by-month. Instead I’ve chosen to share some of my favourite quotations about resilience.

I hope the meditations that I’ve selected make the beginning of another year a little less daunting for you and provide you with strength and inspiration for your cancer journey. As someone once said, life doesn’t get easier or more forgiving, but we can choose to get stronger and more resilient.

resilience-1

 

“Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.”

— Elizabeth Edwards

 

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I’ll rise.

— Maya Angelou

 

“My scars remind me that I did indeed survive my deepest wounds. That in itself is an accomplishment. And they bring to mind something else, too. They remind me that the damage life has inflicted on me has, in many places, left me stronger and more resilient. What hurt me in the past has actually made me better equipped to face the present.”

— Steve Goodier

 

“You all know that I have been sustained throughout my life by three saving graces—my family, my friends and a faith in the power of resilience and hope. These graces have carried me through difficult times and they have brought more joy to the good times than I ever could have imagined.”

— Elizabeth Edwards

 

“Those who make us believe that anything’s possible and fire our imagination over the long haul, are often the ones who have survived the bleakest of circumstances. The men and women who have every reason to despair, but don’t, may have the most to teach us, not only about how to hold true to our beliefs, but about how such a life can bring about seemingly impossible social change.”

— Paul Rogat Loeb

Leave a comment

Filed under Uncategorized