Tag: support

I wrote this essay months ago, just as schools across the country opened amidst a worldwide pandemic, and we faced yet another unique set of challenges in the Storms household. Months later, as 2021 comes to a close and the schools plan to open on schedule starting January 3, 2022 regardless of the dramatic spike in local Covid cases, I feel, again, that I’ve boarded a train I just can’t seem to disembark no matter how hard I try.

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“You’re waiting for a train. A train that will take you far away. You know where you hope this train will take you, but you don’t know for sure. Yet it doesn’t matter, because we’ll be together.”

The words are from Inception, a 2010 blockbuster film that delved deep into dreams, and challenged the nature of reality with delightful, mind-boggling cinematic special effects. I introduced it to my kids recently, and after initially groaning about having to watch my choice of movie, my teen and tween couldn’t tear their eyes from the television.

Now, several weeks later, the quote about the train strikes me as particularly relevant. Facing a secondary liver cancer diagnosis after four years of being free from a rare pancreatic cancer diagnosis, husband and I feel as though we’ve boarded a train with no idea of our destination.

When people say “Cancer sucks,” the phrase should be taken literally. Cancer sucks your life away. It sucks away your dreams, your plans, your future, your hopes. It sucks away your children’s innocence and their childhood, leaving worry and anxiety in its wake. Cancer sucks away your motivation and your ability to do things as simple as figure out what’s for dinner tonight. Your mind is no longer yours because the thoughts you once dwelled on no longer seem important.

We don’t know how or why Nate developed a pancreatic neuroendocrine tumor four years ago, and having seen some of the best doctors in the country, we were confident that the cancer had been eradicated through a surgical procedure that left him with half a pancreas, no spleen, and no gallbladder. (That’s a distal pancreatectomy with splenectomy and cholecystectomy, if you’re in the market for medical terminology. Try saying that to your friends and family for months on end.) Even though he had complications that left him with increasingly larger drain tubes in his abdomen for six months, which meant we took nineteen trips to Philadelphia in a matter of twenty-three weeks—sometimes spending more hours on a train and in a car than we did in Interventional Radiology—we were optimistic that his cancer was history.

Since Nate’s most recent diagnosis, my mind is like a laundry room dryer, endlessly spinning the same pieces of clothing in dizzying circles. Only, the “pieces of clothing” are my thoughts, tumbling round and round, trying to piece together the information I’ve been given, sure that if I just think hard enough, I’ll be able to make sense of this diagnosis, to solve this hundred-thousand-piece puzzle that has no marked beginning and no good end.

And yet, once you’ve been given a cancer diagnosis, the idea of cancer never really goes away, even when you’ve been pronounced “cured.” Each time Nate gets a follow-up CT scan, we hold our breath. With each clear result, we release a sigh and get back to living, to work and school, to navigating the challenges of living in Covid-pandemic times. To celebrate his 3-year cancer-free anniversary, we donated blood together last year.

Then, two-weeks ago came the scan we’d been dreading since the start—the one with glaring anomalies on his liver. If a first-time cancer diagnosis was the earthquake of uncertainty that brought our world to a grinding halt, a secondary cancer diagnosis eighteen months into a worldwide pandemic is the tsunami that threatens to take down everything we’ve built.

The future we’ve allowed ourselves to envision in our imagination after those first shaky months and years since the initial diagnosis has once again been wiped clean to a blank slate of the unknown. His oncologist seems optimistic. The embolization procedure they want to use to starve the tumors by killing the blood flow that feeds them has a history of success.

But long-term success? That’s an outcome no one can predict.

We’ve unwittingly boarded a train with a mystery itinerary, and I have a funny feeling our journey won’t be like the tours offered by travel agencies to globetrotting hodophiles, since I sincerely doubt we’ll be allowed to disembark in Curaçao or Portugal.

Somehow we’ve managed to climb aboard the cancer train in the middle of a pandemic. This feels grossly unfair as we can’t even actually travel right now, and yet, the cancer train is still making all its regularly scheduled stops. To add insult to injury, once we’re on the cancer train, we’re not allowed off until the train comes to a complete stop and the doors open, which means we’re in for one hell of a ride. One might say the train is more like a roller coaster, and my family knows exactly how much I loathe noisy, rickety, vomit-inducing roller coasters.

The last time we went through this, we were reluctant to allow close friends and family to get wholly involved, but there were times we had no other choice. When Nate needed surgery during the last week of school, it was my newly-retired father who came to stay with my kids and pets while local friends drove the kids to and from school.

When Nate spiked a fever in the middle of the night two weeks after his drain tube was put in, we counted our blessings that our kids’ piano teacher could come over at midnight to stay with our already-sleeping seven- and eleven-year-olds.

When I was distraught because I had to tell the kids we couldn’t go out for simple treats like movies or ice cream because money was stretched thin and we just didn’t know what the next day would bring, an internet-made friend from halfway across the country begged for my address and sent gift cards so the kids could experience what kids should, even in—and maybe especially in—the worst of times.

When our trips to Philadelphia took longer than anticipated, or the train (the real train, not the metaphorical one) broke down and we had to walk twenty blocks, our neighbors were here to pick up our children from school, watch them, help them with homework, and feed them dinner until we came home, deflated and utterly exhausted.

So when he received the diagnosis this time, I wasn’t surprised by the outpouring of love and support from friends and family near and far. Offers to watch our pets, our house, our kids, make meals, or start a crowdfunding campaign were endless. Despite their own exhaustion, regardless of pandemic fatigue, friends and family provided us with a safety net of physical, emotional, and practical support.

“Whatever you need,” they said.

But what happens when you don’t know what you need?

Personally, I think I could use a two-hour full body massage and a week sitting at the beach to forget about the world, but that’s not going to happen right now. Instead, I get to homeschool an eleven-year-old who’s on our public school’s virtual learning platform due to Covid, but who, only months ago, was diagnosed with severe anxiety and OCD with ADHD tendencies, which means there’s no way she can tackle this amount of work on her own without my help. I play the role of a sixth grade teacher frequently in our house, and we’re only a week and a half into school. The pandemic may have made virtual schooling necessary, but cancer has made me not near as patient a teacher as I should be.

I’m a writer who is two and a half books deep into a fantasy trilogy, who promised my readers a third book by February of 2022, but who may have to break that promise for no reason other than that my brain won’t let me process words, let alone figure out plot and character arcs. So cancer has taken that, too, or at least pushed the completion of that final book to a distant train platform somewhere in my future.

I’m a mother who’s responsible for getting kids to volleyball practice, piano lessons, doctor appointments, dentist visits, and therapy appointments (because after a cancer diagnosis, we all have anxiety disorders in this house). That was the deal my husband and I made when I quit my full-time job five years ago in exchange for part-time work that allowed me more time to focus on writing, but cancer has taken that time and filled it instead with phone calls, emails, appointments, and endless, endless research.

And now I once again play the role of caregiver to a two-time cancer patient. (Which, for the record, is not nearly as exciting as being a two-time Academy Award winner.) I made a promise to my husband eighteen years ago that I’d be here for him in sickness and in health. As many times as it takes, no matter the destination, I’ll board any train with him, anywhere, always.

I am grateful for our support network. I’m grateful that no matter how fast this cancer train seems to have whisked us away, we have dozens, maybe hundreds, of people who are banging on the doors, breaking the windows, clinging to the roof, or hanging onto the steps of that train, ready to help us in whatever way possible.

I just wish I knew where the train was going.