Month: February 2016

Before your cancer diagnosis, did you push through exhaustion to pull an all-nighter, cramming for a test; stay up late reading to finish a murder mystery; or take a stack of work home to meet a deadline? I confess I had done two out of three of those examples before I received my leukemia news. I am here to tell you, now is not the time to skimp on sleep at night. And a full seven hours just isn’t enough.

You and I are not cyborgs but something much more elegant. We are human beings, made up of an average of 7 billion billion billion atoms (or 7 followed by 27 zeros). According to scientific studies, human minds integrate the day’s information during REM sleep. Our bodies take advantage of the unconscious time to regenerate stressed atoms. After a good night’s sleep, we awake spiritually refreshed. The human mind, body, and spirit heal during sleep.

Don’t you want to be a good recoverer? (I know you do.) You should put overnight sleep at the top of your be-good-to-myself list. If you have completed your cancer treatments, now is the time to allow your body to regain its equilibrium. It is doubly important to rest as much as possible when confronted with chronic cancer.

How much sleep is enough, you wonder?

Trust me when I say it will be more than the American average of seven hours a night. I don’t have a hard and fast answer for you. As with your unique cancer experience, only you can determine how many hours of rest at night you really need.

Here is an experiment. Perhaps have an early dinner and go to bed just after sunset, setting the alarm for ten minutes before sunrise. You’d be amazed at the joyfulness you will feel watching another day begin because you are there to witness the dawn. Sleep as our ancestors did for a week. Be grateful for the moments at the start of the day.

If that suggestion is too extreme, for a week add an hour to your sleep routine. If you are a morning lark, head to bed earlier; if a night owl, stay asleep an extra hour. Or divvy up the time evenly between morning and evening. Just sixty little minutes a night could boost your stamina and concentration the next day.

Try going to bed at the same time each night for a week. You might discover settling into such a routine is something your body and mind crave.

These ideas are all a variation on the same theme. Sleep more. Become an extraordinary recoverer.

And if you’re still tired during the day, check out Chapter 5.

 

 

Napping is not just for little kids. Before your cancer, if you only napped when sick you may associate the idea of a nap with illness. For your well-being, you should change your mindset. Be sure to recognize you need to treat yourself well. A nap is on the must-do list, not a luxury for others.

After my life-saving stem-cell transplant, at least at the beginning, most of the time I took two naps a day. During the fall of 2011, I was on sick leave from my job before transitioning to long-term disability. So I had the leisure to nap while away from work commitments.

If you, too, have the luck to take some time away from work, do it. Your body, mind, and spirit need to nap. Try to be the best recoverer you can. Never stifle yawns—instead, understand yawning as a sign to curl up under the covers to snooze, whether you just had a big lunch (siesta time), or you feel a natural dip in energy due to circadian rhythms at four o’clock in the afternoon. Nap in the morning or before dinner if you need to. Give yourself permission to nap.

What about those who continue working throughout the transformative experience of having cancer? Underneath the cloak of hierarchy at organizations are human beings, just like you. Talk with your supervisor, negotiate with the human resources department, share your napping needs with colleagues. It is vital in your role as recoverer to have others recognize and support your need to nap, ideally for at least twenty minutes each time. If your workplace is not conducive to lying down behind closed doors, perhaps ask to space out for even a few minutes off your feet in a chair.

As I detailed in Chapter 4, your body and mind recover during sleep. When you can no longer concentrate on your project, if you cannot stifle that yawn, recognize you need, nay, deserve a bit of shut eye.

A nap is a small price in time to pay to rebuild your identity.

 

You received your admittance ticket to the cancer club with your diagnosis. Did you recognize at that moment how much your illness would change you? Probably not. Can you even comprehend now how much cancer dominates your thinking, your emotions, how you live your life?

Just like the beautiful frozen structures that are snowflakes, every cancer patient is unique, with one-of-a-kind experiences. But your cancer and treatments are not the parts that make the whole of you.

It’s time to begin to recognize you are miraculous. If you are living with chronic cancer or have completed your cancer treatments and are in remission, you are alive, which makes you a miracle. Don’t take this extra time on earth for granted. You should be living life to the fullest.

But how, you lament.

Ever since your diagnosis, when the spine in your book of life cracked, you’ve devoted most of your day’s energy, and your even dream life, to cancer. I recommend a change in focus.

It’s time to rejigger how you look at life. To refocus on living, you must toss away your old label of “cancer patient” for a new one. Let’s call you a “recoverer.”

A true friend gives it to you straight. And I need to be that friend for you. So no more pity parties. No more questioning “why me?” I will tell you the blunt answer: why not? There is no rhyme or reason to why your genetic background or your God or your environment may have triggered your cancer. Stop trying to figure out the answer to why me? and start to be a recoverer.

By going through the steps in Chapter 1, you faced the moment you received the news of your cancer. You reconfigured your visceral memory. Instead of a sympathetic response to fight the reality of cancer or fly away from the diagnosis by not acknowledging it, you engage with the moment via a parasympathetic response, by resting your racing heart, relaxing your jumbled mind, and renewing your shattered spirit. You now own your diagnosis. Congratulations, you have begun to heal from the trauma consuming you.

Hello there. I’m Erin, an author with twenty years’ editorial expertise and a vegetarian mom in my mid-forties. I have many passions, including books, parenting, photography, writing, and yoga. I am also a member of a club nobody wants to be part of. The cancer club.

Modern medicine coupled with support from my family and friends as well as my own resilience saved me. Every cancer patient is unique, with one-of-a-kind experiences. But my blood cancer and treatments are not the sum of who I am.

I am a miracle. How can I make such a bold statement? Before scientists dreamed up bone marrow transplants, patients with my form of acute leukemia died, and died quickly. Yet I am still alive and kicking since my 2011 transplant; hence, a miracle.

Before I dive into the three main parts of this volume, I want to be clear on a few things I am not. I do not have a medical degree, so you won’t find doctor-speak here. Though I admire the nurses and other care-team members who look after me at the hospital and in clinic, I cannot watch blood draws and I still have a bit of a phobia about vomiting. The medical arts are just not my calling. Psychology is a topic I enjoy reading, and I have family members who are therapists. I must be clear, though, again; I have no training in psychotherapy or other mental healing professions.

So what sort of authority do I have to presume to write a book about rediscovering one’s way in the world? Simple, been there, done that.

Though I received abundant information on how to regain and maintain my physical health after my life-saving stem-cell transplant, I felt a bit lost at sea. How was I to rebuild a life I wanted to live? Where were the resources for those affected by cancer, something akin to What Color Is Your Parachute (for college grads wondering what would be a good career after school)? That’s when I began to hunt for some sort of book or DVD to help me understand how to reimagine and then strengthen my identity. I found none. The more I asked around, the more people encouraged me to write it myself. And so I have.

Maybe some suggestions I offer will ring true to you. They helped me, so they may assist you. My goal is to try to be a friend on your journey in your efforts to reclaim your true self.

Do you feel stuck in your world of cancer? I used to.

In my author biography, I now usually list myself as a writer, mommy, yogini, daughter, editor, sister, and napper extraordinaire. Notice how I skipped over that I’m in remission from leukemia? I’m not lying by omission, it’s just not a big deal to who I am because I’ve moved beyond cancer as my identity. And you can, too.

You have cancer. I have cancer. We all have cancer—it’s a scientific fact.

Turns out human bodies harbor traces of cancerous cells from birth until death. Usually, your fabulous body keeps these aberrant cells in check. One day, though, some cancer sneaks under the radar, grows in a hidden corner, seemingly just past your body’s peripheral vision…

Your smooth, perfect-bound book of life suddenly has an enormous crack in its spine. This tear is the moment you receive the cancer diagnosis. The doctor explains details about your cancer, yet you are lost in emotion. You may catch a few words or phrases; probably, the doctor sounds like the teacher in Peanuts cartoons—muffled, incoherent, distant, and off-screen. You realize your life is about to change forever. I call this dramatic pause the Before and After.

 

Everyone has a different diagnosis story (see sidebar 1.1). But you already know all about the Big C. I do, too.

On February 10, 2011, I transformed from a happy, healthy wife and working mom to a terminal cancer patient. The hematology-oncologist told me over the phone I had a rare and aggressive form of leukemia called Philadelphia chromosome positive acute lymphoblastic leukemia (or Ph+ALL). Without immediate treatment, the cancer would kill me in weeks. And so I endured grueling chemotherapy and radiation as well as a stem-cell transplant to stay alive. But you’ve gone through (or are living with) your own ordeal with cancer. Take time right now to reflect on your cancer diagnosis moment…

Maybe your life up to that point flashed before your eyes. Or perhaps you considered your own mortality for the first time. Whatever your reaction to the cancer news, slow down your thoughts and emotions enough so your mind and heartbeat are not racing. Take a few long, deep breaths, engaging your parasympathetic nervous system (see sidebar 1.2). Now step back to gain perspective on the life-altering information.

Tell yourself about your diagnosis story. Find a creative way to express yourself. I chose to write during and after my cancer diagnosis and treatments, which became my published memoir, Every Breath Is a Gift: Reflections on My Leukemia Journey. Maybe you also want to put pen to paper. If that doesn’t suit you, perhaps silently say a prayer, make up a blues song and belt it out, grab your kid’s crayon and doodle the details, or take some old plates outside and (goggles on—safety first!) smash them to smithereens against a wall to the rhythm of your breath.

However you get the moment out of your system, be sure you commemorate your bravery. Place a shard from the broken plates or a recording of your song or whatever it may be in a special box on a shelf for safekeeping.

You now know my diagnosis story and have a clear remembrance of your own. Time to get you unstuck.

But how? At times, you may feel you’ve got a giant red “C” tattooed on your forehead with the way everyone reacts to you only as someone with cancer. Such thinking becomes so ingrained in your psyche, you begin to treat yourself as just a blob of cancerous cells.

With this volume, you will come to understand the three main tenets I recommend to move beyond your cancer identity: rest, relax, and renew. Think of this book as a sort of friendly primer for understanding your multifaceted self as well as how you interact with others and the world. You will learn how to remove the prism of cancer from your vision and get back to living life.

I am so pleased you and I are no longer strangers. Introductions are done.

Sidebar 1.1: Richard’s diagnosis story

TK

Sidebar 1.2: The parasympathetic nervous system

Unlike the sympathetic nervous system with its fight-or-flight reactions, our parasympathetic nervous system (PNS) smoothes out the ruffled feathers. It controls homeostasis, a tendency toward a stable state of equilibrium between the different but interdependent elements of an organism. Engaging the PNS leads to positive feelings, which reduce stress, enhance positive emotion, and strengthen the body’s immune system. The PNS is a vital component of resting the body, relaxing the mind, and renewing the spirit.

Beyond Your Cancer Identity

Contents

Chapter 1 Introductions, please

Chapter 2 Who I am

Chapter 3 You are now a “recoverer”

Part One: Rest

Chapter 4 A full seven hours isn’t enough

Chapter 5 Naps are your new best friend

Chapter 6 Better sleep through medicine

Chapter 7 Meditation helps you rest

Chapter 8 Exercise makes you tired (in a good way!)

Chapter 9 Advice for insomniacs

Part Two: Relax

Chapter 10 Control is an illusion

Chapter 11 Fake it till you make it positive

Chapter 12 You get five minutes a day

Chapter 13 Talk therapy helps

Chapter 14 Meditation clears your mind

Chapter 15 Yoga and breath work reconnects you to your mind and body

Part Three: Renew

Chapter 16 Change is the only constant: patient to person

Chapter 17 Language; or, what do you call yourself?

Chapter 18 Eat for your new body

Chapter 19 Nourish your spirit

Chapter 20 Work when you are ready

Chapter 21 When people don’t get the new you

Final thoughts

Chapter 22 Reintegrate the best of the old with the new

Chapter 23 Daily practices to remind you of this precious thing called life: ten hugs a day, gratitude journal, prayer, find your mantra, be kind to yourSELF