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’m a work in progress. I work to heed my oncologist’s advice: Don’t spoil today by worrying about tomorrow."
I’m living with metastatic cancer as a chronic disease. Occasionally I trot that statement out and try to wrap my mind around it. Today is one of those days.
I recently “finished” another six cycles of chemotherapy for a second recurrence of Stage IV ovarian cancer. My CT scan was clear. I’m N.E.D. (no evidence of disease). Bring on the ticker tape parade.
That would’ve been my reaction after my initial treatment and surgery that resulted in a NED period of eleven months. Even after the first recurrence, I whooped and yelled hip-hip-hooray. Then recurrence number two rolled around eighteen months later. The reality of my situation hit me like a persistent case of the flu.
My oncologist told me when I began my first NED stretch that I would be on maintenance “until there’s progression.” That’s when I began to understand that my cancer would never go away completely. I had great difficulty wrapping my head around “the rest of your life.” I didn’t truly get it. Now I do.
It’s hard for loved ones and friends to understand. I should be thrilled and popping champagne to be “cancer-free.” But it’s difficult for me to get excited, knowing it’s only a matter of time until I return to the starting gate with six cycles of chemo ahead of me. And in the meantime, there’s maintenance treatment, which in my case this time involves chemo treatments every third, sixth, and seventh week, indefinitely, in hopes of prolonging the remission period.
A lot has been said about treating metastatic cancer like a chronic disease. It’s one of my oncologist’s (whom I adore) favorite topics. She says we shouldn’t be so focused on curing metastatic cancer, but rather treating it as we do other chronic diseases, like heart disease or diabetes.
While I have the greatest respect, faith, and trust in this woman who has treated me for three-and-half years, I beg to differ on this issue. From a patient’s perspective it looks very different. I would never say my disease was “better” or “worse.” My husband has heart disease. My father has diabetes. They too would like cures rather than lifelong treatment.
But the way we treat cancer is different. We treat it by pumping poison into a major blood vessel through a medi-port in our chests. The various drugs can cause white blood counts, hemoglobin, platelets, etc., to plummet, which can lead to life threatening illnesses and infections, anemia, and profuse bleeding. Chemotherapy offers a litany of other side effects: insomnia, chronic fatigue, weight loss or gain, mouth sores, alopecia, loss of taste, nausea, dizziness, skin rashes, and loss of hearing to name a few.
Metastatic cancer adapts and runs roughshod over treatments, forcing us to keep changing, looking for something that still works, until finally we run out of options.
What we need are better, less toxic, and less expensive treatments. What we need are diagnostic tools that allow ovarian cancer to be discovered before it has spread. I vote for a cure that allows us to live our lives without the pall of uncertainty hanging over us. Without the scananxiety that happens every three months. Without the lab work that shows tumor markers are once again trending up.
If we had those tools, I wouldn’t be required to sign paperwork that says I understand my treatment is palliative, not curative, under the guise of chemotherapy education every time I start a new regimen. Healthcare providers, we get it. Call it what it is. A liability release form. Don’t rub our noses in it.
So what do I do in the meantime? I’m a work in progress. I work to heed my oncologist’s advice: Don’t spoil today by worrying about tomorrow. She also reminds me that tomorrow may bring a new treatment that works better with less side effects. I plan to stick around and be here for that breakthrough. I remind myself that the Holy Bible says “Do not fear" 365 times.
Foremost, I remind myself that many women don’t get this time to live life after their diagnosis. Only 19 percent of women diagnosed with Stage IV cancer live more than five years. So, in honor of those gone too soon, I strive to make this time count.
I’m a novelist who writes inspirational fiction and I try write every day, even when I don’t feel like it. I play with my grandkids every chance I get and spend time with my family and church family. I enjoy the cardinals and hummingbirds jockeying for position at the feeders outside the bay window in our breakfast nook while I eat peanut butter toast and drink coffee.
In other words, I accept this gift I’ve been given of understanding how precious time is. In return, I promise to live life to its fullest—something we should all do, with or without chronic diseases.