I am a cancer thriver. I proclaim this cautiously so as not to offend those of you who think I’m insane. Please, hear me out. I’ve had nineteen years to reflect upon, ruminate on, wallow in, steep in, and digest my cancer diagnosis. So, if you are recently diagnosed and still make a cross with your fingers to deflect anything having to do with cancer, I get you.
News of my diagnosis blindsided me like a tsunami. I was thirty-eight years old with three young children. My husband and I had just purchased our dream home, and my teaching career was in full bloom. A colonoscopy revealed two types of cancer in my colon: stage one colon cancer in my descending colon and neuroendocrine tumor (NET) in my ascending colon. The neuroendocrine tumor had already spread to my liver.
The first few months I felt like I was drowning in an ocean of unfamiliar diagnostic tests and treatments. Each new procedure came with its own slew of “What ifs?” What if I have debilitating side effects? What if they can’t access a vein? What if this treatment doesn’t work?
After a year of swirling from one treatment to the next, awaiting one scan result after another, the torrents slowed to a steady stream. Physically I had survived, but emotionally I was pummeled.
Holidays came and went, but joy eluded. For her birthday, my daughter asked for a slumber party, but the date happened to land on the day of my six-month MRI. My best friend stepped in to corral the little girls for a few hours while my husband drove me into LA. It broke my heart to miss this milestone in my daughter’s life.
A few days later, at my follow-up appointment, my oncologist was thrilled to tell me my scan showed no evidence of disease. He was quick to clarify, however, I was not cured. But the seas would be calm…for a while.
“A while,” I pondered. Will “a while” get me to my daughter’s next birthday or to my son’s wedding day or to my first grandchild? Will “a while” take me to France to eat a warm baguette at a cafe that overlooks Le Louvre?
These unanswered questions swirled and churned and eventually became their own tsunami…a tidal wave of an uncertain future that could come crashing down at any time to obliterate the new normal I had so painstakingly reconstructed.
This uncertainty loomed so large that it began to suffocate the joy from everyday life events…my son’s soccer games, my students’ laughter, the warm cuddles of my dog. I dare not let my guard down and get too attached, lest it all is swept away, I warned myself. I didn’t want to be blindsided like I was when I was first diagnosed. This internal debate blared so loudly it drowned out the pleasures of the present moment.
But I’m not one to give in. I didn’t give in to cancer. Instead, I found a specialist and braved a year of aggressive treatments. I would not let this disease rob me of my joy. In talking this over with a friend, she told me how counseling had helped her cope with the trauma of her divorce. She gave me her counselor’s name, Pat, and suggested I give her a try.
At my first meeting with Pat, I gushed with doomsday scenarios of my future. Pat listened with compassion, nodded, and took notes. Then she explained that my reaction to what I had been through was completely normal. In fact, there was a name for it: adjustment disorder. Adjustment disorder is defined as an emotional or behavioral reaction to a stressful event or change in a person’s life. Symptoms can include anxiety, depressed mood, or disturbance of emotions. This diagnosis felt like an anchor I could hold onto in this sea of uncertainty.
After being tossed and turned by the currents of a precarious future, I’ve finally reached calm shores. Like the captain of my own celestial vessel, I’ve learned to sail on the winds of the four C’s: cope, create, commune, and curate.
Cope: First, I had to learn some tools that would allow me to cope with the onslaught of thoughts. Some thoughts were little and menacing…Will the nurse get the Sandostatin injection in one try today or will I be stuck 3 times? And some were more like torpedoes, Will next week’s MRI reveal that the tumors are progressing again? My counselor acknowledged the intensity and frequency of my thoughts were a normal side effect of adjustment disorder. She likened the thoughts to a build-up of energy that needed to be heard and validated before they could be released.
Pat told me to imagine placing all my contrived scenarios into an imagined Tupperware container and keep it on a shelf in my mind. At designated times each day, I could pull the container off the shelf, open it up, and let the thoughts run wild. Twice a day, I’d let the thoughts run amok. My cry sessions, like controlled releases of an emotional damn, resulted in fewer untimely breakdowns.
Create: I believe, as humans, we come to Earth to create. Some are artists, some are quilters, some are composers, while some are gardeners. I am a writer; art flows from the tip of my pen. Words pour out like a waterfall when I’m heartbroken and carry me to peaceful pools of healing. Journaling has become a way to cope. After receiving the news of a scan that showed progression, words scribbled out of devastation and despair somehow arranged themselves into a message of hope. First, contrived scenarios gushed out of my fingertips as if from a slashed artery. Like a warm blanket, my journal collected these broken words and cradled them in love and compassion. After I had spelled out the doomsday scenarios, I asked God to respond on the opposite page. Like golden honey, sweet words of hope dripped from my fingertips to offer divine insight. Documented in my journal, these words are often revisited and become a salve for my soul.
Commune: Despite living with cancer, I’ve been able to thrive by tapping into my spirituality. First, I’ve learned to connect with my true self. Through prayer, meditation, walks in nature, and reading the stories of others, I’ve come to realize I am much more than my physical body. This knowledge helps me cope with the loss of my zebra friends. When I still myself and look within, I continue to feel their presence. This is especially true for Giovanna, our LACNETS founder. I often take time to honor her with my thoughts when I see a beautiful sunset. Her ethereal presence continues to resonate in my spirit, lighting my path and offering encouragement when I need it. By communing with God and his angels, I’m able to get in touch with who I really am and understand I am much more than my physical body.
Connect: A silver lining of living with neuroendocrine tumors is the opportunity to connect with others. Serving as a mentor for newly diagnosed patients is an honor and my way of paying it forward. Giovanna and I were diagnosed around the same time (early 2000’s). She knew the power of networking and realized we needed a support group for NET patients in the Los Angeles area. She may no longer be with us physically, yet her legacy lives on through LACNETS. While I’m blessed with family and friends that care deeply, sometimes I need the credibility of someone who’s “been there and done that.” NET is so rare and manifests in so many unusual ways, I find connecting with fellow patients and caregivers through LACNETS brings great comfort.
Curate: Finally, I not only want to share my own story of hope, but I want to provide others with an opportunity to share their story. Recently, I created a website to curate my own writing. Then my friend asked if she could post her story about surviving breast cancer. I was thrilled to do so. In my next chapter, I desire to be a collector of stories, stories of people just like me who were blindsided by an unexpected diagnosis.
We each navigate the sea of uncertainty in our own unique vessels drawn by whatever light we see flickering on the horizon. I hope my journey anchors you, despite the presence of turbulent news. And hopefully someday you will be an anchor for those who follow you. We are so much more than our physical body, and we will thrive NO. MATTER. WHAT.
To read and follow Kelli’s story, visit her website at kellidevanedwards.com.
Written by Kelli Devan Edwards,
NET Patient, NETCONNECT Mentor