For patients with metastatic cancer, NED times are often overshadowed by their lurking disease waiting to pounce and return. Here are some thoughts on living life passionately, both during treatment and while NED
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.
One of the biggest challenges for cancer survivors can be simply not thinking about their cancer once they’ve tamed the beast and been declared cancer-free. As an ovarian cancer patient, I’d venture to speculate that it’s even harder for those of us with late-stage or metastatic cancer to set our diagnosis aside during periods of NED (no evidence of disease). Some women in my ovarian cancer support group on Facebook have expressed the concern that even after two or three or even four years of NED, they still wake up in the morning wondering if/when their cancer will return. They want to know if a time will come when they don’t think about cancer for an entire day.
It’s a good question, and one for which there is no easy answer. But there are ways to deal with the elephant that’s not only in the room, but follows us around everywhere we go. When will it be back? How long do we have? I’ve had one period of NED, which lasted 11 months, but because of my maintenance drug routine, I still felt a like a patient. I tried to remember times when my first thought upon awakening didn’t involve my disease. Memories of a visit to my grandchildren (and their parents), who live far from me, came immediately to mind. I spent a week in Virginia for my granddaughter’s third birthday. We visited the children’s museum. We went to the aquarium and the zoo. We played at the park. We read books, watched movies and colored.
The best times, though, were the make-believe times. Brooklyn played doctor and Carson and I were the patients. She checked our hearts and tended to our boo boos. We played “baseball” with my gripper and a plastic ball. We “slept,” went to “work,” and “ate” supper. We were princesses who battled monsters and dragons.
I woke up every morning and my first thought was, “What fun thing would we do today?” Seeing the world through the eyes of children is so hopeful, so exciting. Every moment was precious, vivid and engraved on my heart. For seven days, cancer rarely crossed my mind, not even when I paused to take pills.
That’s the way we should live life all the time – full-tilt and in the moment. With the joy of a three-year-old whose favorite color is pink and who delights in unicorns and asks 40 questions a minute.
Then I returned home. Back to reality.
Sort of. I’m a fiction writer who writes full-time. Ironically, my joint diagnoses allow me to work fulltime doing what I most love. I’ve published 12 novels and three novellas over the past eight years. Writers live in a wonderful, make-believe world, like children do. What’s more, they’re passionate about their writing, particularly those who write inspirational or Christian fiction like I do. This is my calling. My ministry. It delights me and fills my mind during every waking hour. My novels are intended to touch readers and give them hope in a dark, difficult world. They are more than simple romances – although the romance is fun!
When I write, nothing else intrudes in my world. Especially not ovarian cancer. Many days I go to bed thinking about scenes and characters and wake up with those characters talking in my head. I rush to write down these new thoughts. Cancer takes a backseat.
My advice to my sisters who long for a day when they don’t think about this daunting foe is to find that pastime or vocation about which they are most passionate and pursue it. I’m not talking only about hobbies like reading, knitting or puttering in the garden—although they are wonderful too, for reducing stress and calming the mind and thinking big thoughts. Traveling the world through reading is an escape that I especially love when I’m feeling tired and weak. In one novel, I’m in 1950s Los Angeles with hard-boiled detective Phillip Marlowe solving a crime. The next, I watch a young girl overcome daunting obstacles in Depression-era Mississippi. Then I’m off to help Sheriff Longmire get his man in Absaroka County, Montana. Or in a monastery in Germany with a little girl who grows up to marry Martin Luther, leader of the protestant reformation. I travel the world and learn about history.
But when the weakness passes and we’re NED, it’s time to act and use those longer, healthier
days to make the world a better place for our children and grandchildren. If you’re able or must work a nine-to-five job and yours doesn’t excite you, find one that does. Life is too short.
Some cancer patients become advocates and fundraisers for cancer research. I respect their drive and dedication. I personally need to make my life about something other than cancer. I don’t want to be defined by it, but there’s room for all the different ways we can strive to make this world a place we want to leave to our children. Imagine a world where there is a cure for cancer — or at least far better treatments — for the next generation.
I often see articles where cancer patients are encouraged to make their bucket lists and take those trips, climb those mountains, kayak, visit Paris, take in a Broadway show. If you’re able and up to it, do those things and then come home, dig in, and make a difference.
The act of helping others is outward facing. It takes the focus off us as patients and places it where we can do the most good. Find something you’re passionate about and do that as often as possible.
It’s not always an easy lesson to learn. I confess I failed on many days the first time around. I obsessed over my CA 125 tumor marker numbers. They started to creep up. And creep up. Until the day came, when my oncologist shared the news. A “small” progression had occurred. Time for the cancer ninja to gear up and do battle again.
Looking back, I recognize family time is priceless, NED or not. The time I spend writing takes me far away from the weekly grind of chemotherapy. My stories are intended to give others that same respite and the same hope I receive from my faith. I need to focus on writing more, telling as many stories as my time allows.
Based on a recent CT scan, when I finish chemotherapy in December, chances are good I will be NED again. I don’t know if it will be for six months or four years. It doesn’t matter (well, it does, but you know what I mean). I will do better. I’ve made plans to volunteer in the local ALS Association office. I have primary lateral sclerosis (PLS), which is on the continuum with Lou Gehring’s disease, but not considered fatal. This is a monstrous disease that almost always kills in two to five years. It takes away the ability to move arms and legs, to talk, eat, drink, swallow, and eventually, breathe.
I have only to look to ALS patients to realize we cancer fighters don’t have the market cornered on horrific diseases. They still hope. So can we. And I can support them by volunteering to help an organization that fund-raises for research, advocates for health care legislation for folks with disabilities, helps patients get services and equipment they need, and provides caregivers with support.
For other cancer patients, it may be the environment or voter registration or literacy or working in a women’s shelter, or volunteering on crews going to South Texas, Florida or Puerto Rico to help rebuild lives in these hurricane-devastated areas. The bottom line is find a good reason to get up in the morning, get dressed, and march into the world. Thumb your nose at cancer. Make this day count. Make this time count. NED or not, make it count.