Kelly Irvin is a multi-published novelist and former newspaper reporter who worked in public relations for more than 20 years. She retired from her day job in 2016 after being diagnosed with primary lateral sclerosis, a degenerative motor neuron disease, and stage 4 ovarian cancer. She spends her days writing and loving her family.
I see myself as a cancer ninja. Other cancer patients might prefer a gentler word. Either way, words are important and the choice should be ours.
I’m a life-long writer with a degree in journalism, 40 years of nonfiction writing experience, 12 published novels and three novellas to my name. Words are of paramount importance to me. They are powerful weapons mightier than the sword. That’s why recent discussions regarding the terminology used to describe cancer patients made me stop and ponder. As long as I can remember, we’ve used phrases such as “cancer fighter,” “cancer warrior” and “lost her battle with cancer.” Now some experts are suggesting the war/fight context is inappropriate.
One person wrote that the term “lost the battle” suggests the patient didn’t fight hard enough. For me, the words reflect the same awe I have for soldiers who die in battle. They gave it all. Left it all on the field.
Truly, I find myself at war. My body is engaging in a battle with cancer. It’s an all-out, no-guts, no-glory fight. That’s how I see it. In social media, I use #cancerninja as one of my hashtags, which is part humor (I have mobility limitations) and part in-your-face.
I have battle strategies to win the war that I’ve gathered from experts, reading and listening:
1. Good nutrition. I stuff myself with brightly colored fruits and vegetables, such as lots of raspberries, blueberries and strawberries, avocadoes and sweet potatoes. All these foods give me much-needed vitamins and antioxidants, weapons my body needs to fight this disease.
2. Rest. Self-explanatory.
3. Exercise. I try to keep my body strong for the fight. Exercise also reduces my stress and allows me to think more clearly.
4. Prayer. To me, God is the most important armor of all. Knowing He is on the field with me gives me the courage to stay the course, no matter how it turns out.
5. Preparation and research. I am famous for my Internet searches of symptoms and what lab results mean. I follow all the research organizations and institutions online and on social media. I print out articles about new advances in treatments for ovarian cancer (not enough, not fast enough) and clinical trials (not enough, not fast enough). I ask questions. I advocate for myself. My oncologist told me Zejula (niraparib), a newly approved PARP inhibitor, was only for BRCA-positive ovarian cancer patients. I was sure women like me, who do not carry that gene mutation, were also helped by it, albeit not as much. Together, we checked it out and discovered I am eligible. Providing my insurance cooperates, Zejula will be my weapon of choice for maintenance when I am NED (no evidence of disease) again, which I will be in September when I get my next CT scan. That brings me to my most important weapon:
6. Positive attitude. Believe. The statistics haven’t improved much in the last 30 years. But women survive stage 4 ovarian cancer. I plan to be among them because I have a 2-year-old grandson and 4-year-old granddaughter who deserve to have a grandma who dotes on them. Period. End of story.
I might still lose the battle, but I’ll go down fighting. I will not surrender. Some decide to go quietly into that good night. That is their choice.
And it’s my choice what words I use to fortify myself at the beginning of each day, at the beginning of each doctor’s appointment, at the beginning of each treatment, before each CA 125 tumor marker test, and before the results of each three-month CT scan are revealed.
That’s my point. We shouldn’t let someone else decide what terminology is appropriate for the “cancer patient.” I don’t like to be called a patient. When I’m NED, I’m not sick. I still have cancer, but I’m healthy in most other ways, aside from the primary lateral sclerosis (PLS), but you know what I mean.
We should do and say what works for us. Cancer ninjas, like me, should feel free to say so. Those who prefer a more peaceful approach should collect the words that work for them without thought for the politically correct. We have enough challenges without getting ourselves tangled up in what others think about our use of language.
As for myself, I shall go forth and proclaim: I am warrior, hear me roar. My recurrent cancer is so afraid, my tumor markers crept down a few points before the first chemotherapy treatment. I’m geared up and ready to advance against the enemy.