Scoring the big NED often leads to that "Terminator" voice whispering in your ear.
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 was giddy with delight the day my oncologist showed me the CT scan report that showed no evidence of disease (NED) after six months of chemotherapy and a radical hysterectomy to treat stage 4 ovarian cancer. She then shared with me her plan of action: a targeted drug therapy administered through my port, along with lab work and an appointment with her every three weeks. A CT scan every three months.
“For how long?” I asked.
“Until the disease progresses,” she responded.
I swear I heard a whisper in my ear in that Arnold Schwarzenegger “Terminator” voice, “I’ll be back.”
That’s when circumstances reminded me I’m a terrible dancer. Women with stage 4 ovarian cancer often describe that period when scans are clean as “dancing with NED.”
I don’t dance well. With late-stage ovarian cancer, a woman never gets to say she’s “cancer-free.” She’s not technically in remission. I hesitate to call myself a cancer survivor because the hard reality is that it’s never really over. It’s difficult to explain to folks who want to be relieved and stop worrying about you. While nothing is evident on the scans, the microscopic cancer cells are playing hide and seek in your body. They almost always win the game.
Knowing that fact made it almost impossible for me to go about my business after this “clean” bill of health. I wanted to be cool and calm and collected. Instead, I lived for that three-week appointment, and, more specifically, my CA 125 score. The layman's definition of CA 125 is a protein found in the blood of women with ovarian cancer. It’s often referred to as the tumor markers. My “score” was 12 back in July 2016 when I scored the big NED. The normal range is 0 to 34. A few weeks ago, mine hit 64 after months of rising slowly, but steadily. In my mind, I was convinced the cancer had made an end run around the maintenance therapy drugs and was busy establishing itself somewhere in my body.
Women cope with NED in a variety of ways. I’m a writer. I write. Six days a week, I’m at my computer pounding the keyboard, on deadline for the inspirational romance novels for which I have contracts and deadlines.
I exercise as much as I can, given that I also have a degenerative motor neuron disease that limits my mobility. While I exercise, I sometimes pray and I read what I call “Kelly’s favorite affliction verses.” Verses that remind me not to worry, not to be afraid, not to feel alone. Of course, I then do all three.
I count my blessings at the beginning and end of every day—and sometimes in the middle. A funny, hard-working, supportive husband, two healthy, smart, independent children, two gorgeous grandchildren, a roof over my head, a good pension, excellent health insurance, a book contract with a major publisher, a church family who loves me like crazy, a tremendous, caring oncologist and a smart, respected gynecological surgeon (both of whom dole out hugs with their treatment).
Still, I worried. I prepared my speeches for telling the kids I needed to go back on chemo. I prepared a different speech for my elderly parents. I made a list of tasks I need to complete and debated whether I’d be able to travel to an annual writing conference.
None of that prepared me for that moment when NED left the dance floor. On a Monday, I had my three-month scan. I waited until the following Thursday to text my oncologist. When she had time, could she look for my results? I waited three excruciating hours without response. Very unlike her. She could be busy with patients at the clinic. Maybe she never received the text. Maybe she was waiting for a quiet moment to call me with bad news. Finally, I couldn’t take it. I called her. (The day she gave me my diagnosis she also gave me her cell phone number. She’ s that kind of person.) She hadn’t had time to look. Call me in an hour and half, she said.
More waiting. Did I mention I’m not good at waiting?
1:30. I can make it to 1:30. Finally, I call.
“There’s been progression.”
That’s it. I didn’t hear much after that. Arnold Schwarzenegger kept bellowing in my ear. “I said I would be back.”
To be totally honest, there was a tiny bit of relief. I know that sounds crazy. But there’s no more waiting and wondering when I’ll get ambushed. It’s here. The battle’s on. Chemo once a week for three weeks, one week off, for six months. In this case, my progression is small and Dr. K thinks we might be able to knock it out in three months. So now I’m living for that CT scan in September. Time to suit up and get out on the field.
I hang up and start counting my blessings. That’s the key. If I’ve learned any lessons from cancer, it’s that one. I have great medical care and health insurance. Not everyone has that. I know my church family will huddle up, storm the throne room, and pray for me. I know I have some of the best medical care in the world at my fingertips. I have family who will take care of me. I have a God who loves me.
All those blessings are also reasons to live. I want to see my grandkids grow up. I want to grow old with my husband. I want to spare my parents the heartache of losing another child. That’s some serious motivation to exercise, eat healthy foods and follow my treatment protocols. We all have are reasons. It’s important to always keep them front and center. We must not make it easy for cancer to win.
Out of sheer stubbornness, if nothing else. We can’t let cancer win because we have too much to do, too much to offer and too much living left to do.
As cancer patients, we live in the most exciting time in history for cancer research. Immunotherapy, precision medicine and the Vice President Biden’s Moonshot. Some of the smartest people in the world are working on treatments and cures for all kinds of cancer. If for no other reason, we must hang on. The new drugs and treatments are coming. I don’t know about you, but I plan to be here when they arrive. I plan to dance the two-step with NED in three months.
See you on the dance floor!