By Judy Pearson
As a published biographer, research is a big part of my life. In 2011 (I can’t believe it’s been ten years!) when I heard the words, “You have Triple Negative breast cancer,” I donned my research hat and went to work. I assembled a medical “dream team,” based on personal contacts and online reviews. Surgical options, reconstructive avenues, and chemo drugs were all plugged into a spreadsheet.
However, it never occurred to me that life after cancer would be different, and that survivorship was a “thing” to be researched as well. When a cascade of post-treatment issues rained down, I asked my oncologist what was happening. “We were busy saving your life,” she snapped. “Discussing survivorship wasn’t necessary.” And so my self-guided education began.
To assuage the physical issues, diet and exercise topped everyone’s list. That was easy for me as those were already a part of my lifestyle. (Note to self: my oncologist had told me at the outset of treatment that my overall good health gave me a great advantage. Superior motivation to pass up the ice cream and move my booty every day!) Having been an A student in sleeping, the night sweats and insomnia were cramping my style. In a total reversal of character, I gave in to naps when my body asked for them.
The “between the ears” stuff took a little more work. My cancer had come at the worst time. Does it ever come at a good time? I was a newlywed. My military son was deploying to Afghanistan. The questions rattling around in my head began with why: why me, why now?
It seemed the most logical people to consult were those who had walked the same dusty road: sister (because men and women heal differently) survivors. That first step has truly changed my life. I could write thousands of words on the topic. Instead, I give you my platinum level of lessons learned.
Find a Veteran
Again, this is where my bona fide survivorship education began. While every survivor has unique challenges, there are many commonalities as well. Like any relationship, I looked for similarities, women of my age, temperament and lifestyle. One new friend led to another, and although there were a few toxic ones I jettisoned (no negativity and scary stories), for the most part these survivor veterans were great guides for this rookie. Biggest eye opener was the true definition of survivorship: it begins at diagnosis, as that’s when we begin surviving our disease.
Join the Movement
Thirty-five years ago, in 1986, 23 people came together for a weekend. They all had a connection to cancer and were all concerned about the completely unaddressed needs of cancer patients AFTER the acute phase of treatment had finished. By the end of the weekend, they had defined the word survivorship: it begins, they said at the moment of diagnosis – as that’s when one begins surviving cancer – and extends through the balance of life. No magical three or five year goal line.
Their meeting was the founding of the National Coalition for Cancer Survivorship, and it launched the survivorship movement. They fought discrimination (losing a job because of a diagnosis), the cancer myths (survivors were called “victims” and feared because some believed cancer was contagious), and created a safe environment for survivors to share their challenges and their victories (imagine a world without that!).
It is up to us, today’s survivors, to make certain the movement continues and that every newly diagnosed survivor receives preparation for their treatment AND their survivorship.
Treasure in the Wreckage
You’ve walked on a beach, right? If you’re studying what’s washed up, it’s easy to lose track of how far you’ve gone, until you look back at your footprints. So it is with survivorship. The treatment part of the cancer journey – the wreckage that everyone focuses on – is really just a blip on our timeline. The long walk, the one with the most footprints, is survivorship. And if we’re open to considering it, treasures can be found in our wreckage.
Mine are many, including meeting amazing survivors, dedicated medical angels (some of whom were also survivors), and people I would never have known if not for cancer. I started an organization focused on doing good in a post-cancer life. There’s healing in helping. That led me to another survivor, whose astounding story became my upcoming book, From Shadows to Life.
Would I rather not have lost a breast, my hair and a year of my life? You bet. Do I see my life as richer – and myself as a more interesting and well-rounded human – because of my cancer? You bet. I can’t undo my diagnosis. But I am determined to make the best of all the footprints in the sand since cancer washed up on my beach.
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Judy Pearson is a published author and contributor to many publications. Her new book, From Shadows to Life: A Biography of the Cancer Survivorship Movement tells our shared history. Learn more at JudithLPearson.com.
Thank you for sharing your story, Judy. SBC loves you!
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