Writing for therapeutic expression

For over five years now, since my de novo diagnosis, writing has provided a positive forum for my metastatic breast cancer experience. Essays and poetry as well as my blog are all unlimited opportunities for creativity and outlets for my emotional ups and downs.

When the physicians left my room at 4:30 a.m. on March 25, 2015, I found myself sitting in a darkened room, frozen in time. Traumatized by the discovery of my condition, the world crashed at my bedside. My life’s path, so clearly defined, crumbled under my feet, leaving me lost. Wherever I once drove a well-lit paved highway, I now walked barefoot down a dirt road through the dark wilderness.

If that sounds dramatic, it’s not. Those with metastatic breast cancer watched every dream and plan for the future erased in a moment by the words, “I’m sorry but ...” In my case the shock of the diagnosis still rings in my brain like yesterday: de novo (from the beginning) stage IV, lobular, hormone receptor-positive, metastatic breast cancer diagnosis. My life changed forever from one of great certainty to grave uncertainty. How long do I have to live? What horrific treatments am I in for? How will I pay for all of this? Where have all the friends and family gone, who I thought would be here to help me? Will I become bald from chemo?

Since 2015, I’ve written about my frustration both privately in journals and publicly in my blog, and there’s extensive studies regarding the therapeutic benefits. This new and unknown territory of breast cancer treatment caused uncertainty, fear, distress, and of course, stress. Yet as during all times in my life when faced with adversity, I took out my journal and wrote. While recovering from surgery to put a port in my right chest wall, I began my recovery from the shock with the first of thousands of words since: “I will die from breast cancer.”

Words like “terminally ill,” “lobular,” “breast density,” “estrogen receptor-positive,” “tamoxifen,” and “chemotherapy” replaced the taxonomy of my 49-year life that point. I had to learn this other dictionary I knew existed but hadn’t needed up until then.

Attempting to create some feeling of control over my life and to make sense of what had just transpired, I left with about 20 pages of notes, poems, questions for doctors, and emotional outpourings.

Journal to blog

My journal is a safe place to express myself. No one in my immediate relationship circle could possibly understand my feelings.

A journal

• is private and for your eyes only unless you want to share
• allows you to express your truth: short entries, dreams, poems, long “emotion dumps,” photography, mixed media, drawing, collage — anything that you’re comfortable using to truly speak your heart works - there’s no right or wrong way
• uses any media that works for you, including a smart phone voice recording application
• Allows artistic expression - either small format or large canvas using any kind of media you enjoy. Again this is personal so even if you’re no Van Gogh or Botticelli, who cares what the result, it’s your expression and yours alone if you choose to keep it to yourself.

My blog, The Cancer Bus, developed out of my journals. My blog:

• helped me develop friendships develop through the blogosphere
• uses Twitter, Facebook closed metastatic groups, podcasts, and online places like LBBC give us room to share our emotions so the answers we seek may be found
• helps me find answers to problems and to hear other voices with similar emotional responses to having cancer through dialogues in the comments section. Numerous friendships have evolved this way.
• shows video blogs (vlogs) such as The Brain Cancer Diaries that have highlighted breast cancer and metastatic breast cancer endurers. You can find me discussing poetry in this episode of The Brain Cancer Diaries on YouTube.

Through expressive writing I was able to reach out to others to interact and find hope. It was here I found a loving community ready to hug me virtually with open arms.

And we lose each other. Death is a part of the cancer experience, especially those of us with metastatic breast cancer — and the mourning is no different than it would be had I known these people, mostly women, in person.

Feeling alone, with no idea of how dramatically my life would change in every way can benefit from therapeutic writing. There’s a lasting positive effect proven with scientific evidence by journaling for a mere 15 minutes a day.

By practicing mindfulness techniques, cancer patients find symptoms more manageable and less overwhelming. But it’s important to define mindfulness and find a way to practice it so it won’t cause more stress if you happen to miss a day, find yourself running late to a support group, or in our current covid environment, find yourself isolated and feeling lonely.

Sometimes it’s very hard to keep it going. But setting manageable goals, like simply writing about one thing that made you smile today right after dinner might start you off writing along a much longer reflection about your day.

Reflection

Looking back at my journal entries brings me deep realizations, some sadness, and a great deal of happiness when I remember the joy in being alive and in the world. Reflecting on what’s happened throughout the time since diagnosis is a fantastic way to bring yourself up when you feel at your lowest. I’ve come a long way emotionally since that time, but reading it on paper in my own words truly brings it to the forefront. I feel better for small victories I otherwise may have forgotten.

We who find ourselves diagnosed with metastatic breast cancer may keep it inside along with a wide range of emotions from fear to hope. I’ve spoken to myself, my husband, my friends, my doctors, and even myself. However, that day I put my pen to paper, I allowed my emotions to flow without judgement and without worry. It didn’t take long to fill up my first notebook. This was my truth. No one can say it’s right or wrong, it’s not fit for public consumption. No one needs to understand but me.

Poetry, quotes, observations, questions for my care team, research, and notes about my visits to the many kinds of doctors and therapy appointments soon became a very detailed description of my life with metastatic breast cancer. The paragraphs and pages contained increasingly detailed information as the first year passed and my knowledge grew of myself and my disease.

Drugs like tamoxifen, capecitabine (Xeloda), and denosumab (Xgeva); scans and biopsies; genetic profiling; my push to have a lumpectomy; my request for a change of oncologist; being thrown out of my breast cancer support group because stage IV is terminal and “too depressing;” as well as losing 90 percent of my friends and family — no one understood and I felt I had to keep these experiences to myself.

It was in those pages that I was able to sort out my feelings. There’s a lot to say. Side effects, isolation, insomnia, clinical trials, sexuality, body disfigurement, finances. Maybe there’s also healing process in those words — longing and hope, anger and forgiveness.

Being sensitive to others in our world, be they small or large groups of people, tantamount to writing about our own lives in a public forum entails respecting everyone’s privacy. The private lives of others when seen through another’s eyes means everything and anything out of context may get reused in unintended ways. Trust your own judgement in such matters: if you’d not like if someone revealed it, there’s a fairly good chance somebody else minds, too. Forgiveness isn’t a better strategy rather than asking permission in this case. Excuses needn’t make their way between any of your relationships. There’s many other seeds of ideas to choose from that can grow into a poem or an essay without offending another person or invading their privacy.

The ways to express your happiness, sadness, pain, guilt, suffering, and so on, hang like ripe fruit waiting for you to pluck from the idea garden. Find somewhere quiet and pleasurable for the time it takes to write. Whether you’re writing a brand new draft of a poem or a longer, more scientific essay requiring research and footnotes, what inspires you to feel like putting pen to page or finger to touch screen? A stark office? A sunny bench in the garden? A blanket under a tree at the park? A well-appointed, sacred space in your house? The living room sofa? Where do you find yourself thinking about things deeply? And what time of day works for you? Mornings? After dinner? The middle of the night? So what!

I keep a handy notebook and writing instrument by my side at all times. During 6 months of paclitaxel (Taxol) I found myself in and out of Benadryl consciousness, yet it took my mind in some seriously rich directions. There were times the pen would go from absolutely flawless penmanship to a crooked line of pen where my hand fell off the page as I drifted to sleep, waking to find ink-stained hands and ink-filled pages of insights.

All across the universe

The very idea of writing for some of us can cause stress and that’s certainly not something we with metastatic breast cancer need any more of. The act of journaling should remove stress, not cause more. However, with the blessings of technology, or even without, you can find many different ways to “journal,” across all media platforms, for therapeutic writing for metastatic breast cancer.

Beginning with my first blog post — a peer-to-peer article for LBBC — to Rudy Fischman’s Brain Cancer Diaries last video blog on poetry, writing has always been there for me during milestones in my life. Events like landing an exciting new job, traveling to places around the world, and falling in love. Then there’s the troubling times like losing a beloved pet, my parents’ divorce, failing a class, or the breakup of my first marriage.

Like all of us, my emotions run the gamut. And writing can be simply for private journals, memories, travelogues, photo essays. That includes deciding to reveal your emotions to the public in blogs and published books such as autobiographies and memoirs and chapbooks of poetry. It depends on one’s end goal.

You might find you have a story to tell. A slice of life or a complete biography. But in no way do I suggest putting someone’s emotional health at risk by getting a lot of rejection letters. If you do want to spread the word, you may wish to self-publish, which Nancy Stordahl, author of the blog Nancy’s Point, did with her three books. She uses Createspace, which is owned by Amazon. My favorite book of hers, Cancer Was Not a Gift and it Didn’t Make Me a Better Person, comes directly from her journals and gives us a very direct sense of Nancy’s healing from her own cancer diagnosis and ongoing mourning of her beloved mother, who died from stage IV breast cancer 12 years ago.

Robin McGee, author of The Cancer Olympics, presents her making sense of the error-riddled roller coaster ride that led her to a stage IV colorectal cancer diagnosis. Her book comes directly from her online journals, in which she kept her friends, family, and coworkers up to date.

Deciding to publish her experiences in a book to help others navigate the Canadian health system was a big decision. This can add to the rollercoaster of cancer’s psychosocial demands but if someone wants to make that a goal by all means. I recommend you listen to the audio version, read by Robin herself. I have had my share of success and failure in that area. I’m considering a self-published chapbook of my poetry for a toe in the water before I start my longer book, but we will see where it goes.

There’s so much to do in a day and I get pretty tired sometimes — I’ve only recently given myself permission (without guilt) to even sleep in! How ridiculous is that? — but transitioning from my old life to a different life where retirement never even entered into my mind at 49 when I was diagnosed  writing has always has been my life preserver. Some days it’s not the most beautifully written piece I’ve created, but some days sparkling diamonds full of hope come fully formed out of the mine of my mind.

I hope you find you can express yourself — the anger, the fears, the uncertain futures, as well as the little things that bring you happiness, surprise you, or heal you. If you’d ever like to reach out to me, please feel free to do so through LBBC and I’d be more than thrilled to help you get going and start the healing process expressive writing can bring.

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Ilene Kaminsky is a writer and poet who has been living with metastatic breast cancer since March 2015. She lives in the Bay Area of Northern California with her partner of 10 years and her cat-son, Simon.

You can read more of Ilene’s writing on The Cancer Bus. Her writing was also featured in the anthology Lessons from Lockdown and can be seen discussing poetry on Breast Cancer Diaries, episode 46 on YouTube.