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.
Should I be planning big, celebratory trips or my funeral? My fears may not be rational, but they're real.
‘Tis the season — the Christmas season. But for me, it’s also the season of limbo. My latest round of chemotherapy for ovarian cancer ended recently. I have my PET scan later this week. Then it’s another week before I meet with my oncologist to discuss the results and next steps. My new drug maintenance regimen is tentatively set to start in January, if my insurance approves it. It’s a new drug that has serious side effects for some women—but not all of them.
Limbo is defined by dictionary.com as, “an intermediate, transitional or midway state or place.” Limbo is also a game played with a horizontal bar known as a limbo bar that is placed atop two vertical bars. According to Wikipedia, “players attempt to go under the bar with their backs facing toward the floor. If they knock the bar off or fall, they’re eliminated from the contest.”
That’s how I feel. I’m in the waiting room, the bar is only a foot from the floor and I’m flailing with both arms as I try to keep my balance. I’ve slogged through the treatment and I’m positive it worked. My tumor markers support that certainty. But what if it didn’t? Am I clean or at death’s door? Should I be planning big, celebratory trips or my funeral? My fears may not be rational, but they’re real. It’s the typical scanxiety felt by almost every cancer patient and survivor. If I’m NED (no evidence of disease), how long will it last? Six months? A year? Two years? Will the new maintenance drug work? Will the side effects be worse than chemo?
Limbo is an inordinately large tract of real estate for me. I also have primary lateral sclerosis (PLS), a chronic, degenerative motor neuron disease. Maybe. It could also be something called paraneoplastic syndrome. This happens when a person has cancer and her body’s immune system goes wacko (that’s a medical term) and attacks the central nervous system. It’s rare, as is PLS. My neurologist could only find three cases in medical literature of woman with PLS and ovarian cancer.
Yes, I’ve become a case study. Because the diseases are so rare, my neurologist and my oncologist agree that they simply don’t know which it is or how it will progress. Since treatment for my cancer begun, my PLS hasn’t progressed. But it is a slow-moving disease—we’re talking 20 years to reach its final stages. “We have to wait and see,” my neurologist says.
Wait and see. The very definition of limbo. In the meantime, I’m left to imagine the future. If it’s PLS, how long will I be able to drive myself to appointments? How long will I be able to walk up and down the stairs? How long will I be able to get my walker in and out of the SUV? How long will I be able to cut my own food? These are just some of the questions people with PLS and ALS (Lou Gehrig’s disease) ask themselves after diagnosis with a disease for which there is no cure.
If it’s paraneoplastic syndrome and my body stops responding to treatment for cancer, both will likely wreak havoc on my body. We think, but we’re not sure.
Limbo. The great unknown future we all face in some form or fashion. The question becomes what to do with this limbo. The answer this time of year is wrapped up in a bow and sprinkled with sparkly glitter: Celebrate.
I have so many blessings to celebrate during the lovely in-between times.
Celebrate a full month with no treatment of any kind. Celebrate that chemo is done for now. Celebrate the reawakening of taste buds in time for holiday good eats.
Celebrate no more nausea just in time for those holiday feasts. Celebrate the banishment of fatigue and the return of energy in time for family gatherings.
Celebrate the blessings of kind, caring doctors who do the research and seek the answers needed to provide the best possible treatment for cancer, for PLS and ALS, for paraneoplastic syndromes and for all those other incurable diseases.
Celebrate medical breakthroughs that happen every day, giving us hope for a future where cancer can not only be treated and survived, but prevented.
Celebrate my church family and the freedom to worship with them. Celebrate the birth of Christ and the promise of salvation.
Celebrate being alive.
Tis the season to celebrate. Whatever you believe or put your faith in, never let cancer or any other disease take that away. When in limbo, play, sing, dance, love. Celebrate.