Tag Archives: cancer

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.”

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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.”

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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.

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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?

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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.

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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.

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“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

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Fresh Hope for a New Year

This is the fifth 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 favorite motivational quotations, may these compelling words make the beginning of another year a little less daunting for you and may the theme of infinite hope provide you with strength and inspiration for your cancer journey.

 

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“Remember, hope is a good thing, maybe the best of things, and no good thing ever dies.”

— Stephen King, Rita Hayworth and the Shawshank Redemption

 

“I took a deep breath and listened to the old brag of my heart; I am, I am, I am.”

— Sylvia Plath, The Bell Jar

 

“It’s really a wonder that I haven’t dropped all my ideals, because they seem so absurd and impossible to carry out. Yet I keep them, because in spite of everything, I still believe that people are really good at heart. I simply can’t build my hopes on a foundation consisting of confusion, misery and death.”

— Anne Frank, The Diary of a Young Girl

 

“The best way to not feel hopeless is to get up and do something. Don’t wait for good things to happen to you. If you go out and make some good things happen, you will fill the world with hope, you will fill yourself with hope.”

— Barack Obama

 

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Pretty women wonder where my secret lies.
I’m not cute or built to suit a fashion model’s size
But when I start to tell them,
They think I’m telling lies.
I say,
It’s in the reach of my arms
The span of my hips,
The stride of my step,
The curl of my lips.
I’m a woman
Phenomenally.
Phenomenal woman,
That’s me.

— Maya Angelou, Phenomenal Woman

 

“When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live.”

— Stuart Scott

 

“I can be changed by what happens to me. But I refuse to be reduced by it.”

— Maya Angelou

 

“I’m not a dreamer, and I’m not saying this will initiate any kind of definitive answer or cure to cancer, but I believe in miracles. I have to.”

— Terry Fox

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