by Caroline Johnson
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by Caroline Johnson
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The act of putting pen to paper helped me unleash emotions, confront my changing body, and raise my head to face the darkest hours of my life.
On July 1, 2016, I was diagnosed with breast cancer. There was no lump — nothing showed up in a routine mammogram. The only sign was that my left nipple was retracting into my chest. I’ve since learned that approximately 7 percent of people diagnosed with breast cancer experience nipple abnormalities.
After my mastectomy, it was revealed that I had Stage 3C ER+/PR+ breast cancer.
My diagnosis was followed by 5 months of chemotherapy, 6 weeks of daily radiation, and a hormone blocker in the form of a daily pill. After treatment, I enjoyed 5 years of being a survivor until I was hit with a recurrence in the summer of 2021.
My body is an oil rig.
Inside flammable liquid
safe for now a protected
embryo until one cell
goes rogue one tire skids
and all raw goods and crude
tumble, spill onto concrete.
My lymph nodes are highways
of toxicity, my scars, railroad
tracks. My veins contain
fierce semis loaded with
germs and poison and fumes.
Their convoys are pink skin
beaten down by wave
after wave of radiation.
Throughout my journey of cancer I wrote poems, especially in the first year when I was undergoing treatment. I should add that I’ve been a poet long before my diagnosis. I have been writing poetry for over 30 years now.
My first book of poetry, “The Caregiver,” was published in 2018 and was inspired by years of family caregiving for both of my parents. I cared for the two of them as they each navigated health conditions, including Alzheimer’s, encephalitis, rheumatoid arthritis, and a rare neurological disease similar to Parkinson’s.
I wrote caregiving poems over a span of about 15 years as I watched my parents move through different stages of their diseases.
I like to think, now, that I was their advocate. I spoke up for them when they couldn’t speak for themselves. I signed papers, met with doctors and nurses, took time off to visit them when they were in the hospital — the list goes on.
As I say in the foreword to my book, I didn’t go to school to be a caregiver, but I can honestly say that it has been one of the most important jobs I’ve ever had.
When I was diagnosed with cancer, my parents had already passed, and I had to be my own advocate.
In a short span of time, I had to learn what breast cancer is, and I had to make important decisions about my health. Though I have a husband and a very supportive family, I was ultimately alone when it came time to face the doctors.
Now, I believe it’s often easier to be someone else’s advocate than it is to be your own. One of the hardest parts to me was trying to learn everything I could in such a short period of time and not knowing where to look besides Google.
What helped me? When I was the most overwhelmed, the thing that helped me was something that has always helped me: poetry. I started to write dozens of poems about my experience, and those poems helped to strengthen my self-confidence so that I could act as my own advocate.
The creative act of putting pen to paper helped me unleash emotions, deal with the changing image of my body, and raise my head to face the darkest hours of my life.
The anesthesiologist introduces himself,
bores his kind brown eyes into mine
as I lie on the hospital gurney.
I ask him when I will wake up.
He says he doesn’t know.
I am waiting to wake up.
I am waiting for a new flower
to emerge, and I am waiting
to label that flower an orange lily.
I am waiting for the day
I will really enjoy fruit.
I suppose I turn to poetry similarly to how some people turn to prayer. I’m not a particularly religious person, though I was raised a Christian. I do believe there’s some God out there, though sometimes I find it hard to understand why a God would want people to suffer like this.
I recently read Victor Frankl’s “Man’s Search for Meaning” in an attempt to understand. Frankl, a psychiatrist, was a concentration camp survivor who wrote about the horrors of Auschwitz and the meaning he found there. If he could find meaning in Auschwitz, it seemed you could find meaning anywhere.
I am waiting for the moment
you come home from work
and I am waiting for the fresh earth
and clean rain to germinate that lily.
I am waiting in the day surgery room,
sprawled on an operating table
I am waiting for someone to remove
this IV, to remove this breast, to shout,
“Hey! Your tumor is gone! Cancer has
finally, inevitably, irrevocably been
eradicated from your body!” But no!
I am waiting to fall off earth, to sail in space
and mingle with the planets. I am waiting
to see Mom and Dad again, to hold hands
with their spirits, to not wince at pain.
I believe I turned to poetry to find meaning in my suffering. I wrote poems about my diagnosis, chemo and radiation, and my transformed body. I wrote about being a survivor, about fighting back, and also about the spiritual side of cancer.
In total, I have written more than 60 poems related to my breast cancer experience. These poems have helped ground me in reality while providing a portal to look into a creative and fulfilling art.
They served as my lifeboat when I jumped from a sinking ship. They helped to keep hope afloat, to provide some kind of continuity in a turbulent sea.
I am waiting for a new chance at life,
to see the sun transform our plane
into True Love, for light on our garden,
for a sprig of lily and fresh orange juice.
Yes! I am waiting for you and for the
operation, and I am waiting to thank
my surgeon and my anesthesiologist
1,000 different ways — all grateful,
beholden — for trying to save my life.
Though I’ve published some of these poems in journals and online, I hope to publish the whole collection in the next year or so. It is my hope that these poems — which were a light during my darkest days — can somehow help others going through a similar experience.
If they can help others who are navigating breast cancer to become their own advocates, I will feel my efforts weren’t in vain.
You might not be a poet, but you might have some other artistic ability that helps you process difficult emotions or thoughts.
Perhaps you like to draw, paint, play music, dance, write fiction, or write in a journal. Whatever your passion is, consider turning to it if you’re going through a cancer diagnosis.
For me, cancer was and is such an isolating and deeply personal experience that it was (and still is) difficult to describe to other people sometimes.
I found it comforting to write poems about my cancer journey, to gather my observations and process them before sharing with others.
We are not alone, each of us. We can be heard and should be heard.
Writing can be therapeutic and empowering, whether you choose to share it with others or keep it for your own eyes. If you want to try writing about your experience but aren’t sure where to start, here’s a writing prompt to consider:
Think about your most difficult time during your cancer journey. Close your eyes for a few minutes to meditate on it.
Then, in whichever form of writing is most comfortable to you, write a few lines, a couple paragraphs, or a whole page about the experience and the resources you turned to for help.
Fact checked on January 21, 2022
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About the author
Caroline Johnson has two illustrated poetry chapbooks, Where the Street Ends and My Mother’s Artwork, and a full-length collection, The Caregiver (Holy Cow! Press, 2018), inspired by years of family caregiving. In 2012 she won the Chicago Tribune’s Printers Row Poetry Contest, and was nominated for both the Pushcart Prize and Best of the Net. Her poetry has appeared on Garrison Keillor’s Writers Almanac, and she has led workshops for veterans and other poets in the Chicago area. She is president of Poets & Patrons of Chicago. You can learn more at her website.