The Train

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.


“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.

Mom’s Not Here

I’m tempted to leave the title and the title alone here in this blog post. Because damn. I am tired.

I worked eighteen hours this week on a job that’s supposed to take up no more than ten. And I did it all from home while supervising-slash-teaching my 11-year-old her ratios and fractions and comparisons for 6th grade math class on the virtual platform. I did it while scheduling my Covid booster and her first Covid vaccine. I worked while husband was on conference call after conference call, working with my Loop earplugs jammed in my ears to try to keep the auditory distraction to a dull roar. I played email and text tag with four different coworkers to make sure the work that needed to get done got done.

I worked at the dining room table so I could let my chickens out of their coop to roam the yard without fear of a hawk taking them. (We had several scares this week.) I worked sitting in bed. I worked at my desk and on the floor. I worked with the ever-present malodorous fog of incessant dog farts lingering in the air because my chicken-poop-loving dogs just can’t be more than two feet from me at any time on any given day.

I listened to dogs popping their gums while they lick, lick, lick, intent on driving me madder than any of Alice’s friends. And after the annoyance comes the worry. Wait. Are they licking because something is wrong? (Beyond the fleas we’re still battling. We’re winning, but not by much.) Is there something bothering our greyhound internally? Aches and pains? Or just dry skin? Is his mouth hurting and that’s why he keeps licking, or is it a deeper ache in his bones? And all of this reminds me, I have to run to the vet (like, now) to go pick up his medication. They close at seven.

Do I need to take him to the vet for something more urgent? And is the cat okay? The one with the terminal illness who is obviously not okay, but who is, at least, moderately comfortable since being put on steroids? At what point do we, as pet owners need to make a decision that the quality of life just isn’t there any longer?

And as if to prove my point, the greyhound (literally, just now) tried to attack the terminal cat, as though she’s any threat to him. In actuality, he’s just losing his marbles and doesn’t know what to do anymore, so he gets weird and just starts barking in the cats’ faces, then lunges when they hiss at him. So now the cat is on my lap as I type the rest of this post.

When the 11-year-old gets her Covid vaccine, she plans to go back to school after the holidays and leave virtual learning behind her. Of the two of us, I’m not sure who’s more excited. I think I’ll sob introvert tears of pure joy if I’m ever home alone in this house again. Time that used to be mine to work and write has been stolen by a pandemic ever since mid-March 2020.

Add in the ever present knowledge that husband has liver cancer and we won’t know until next year if the embolization procedures they performed over the last two months had any impact, and I’m basically an electric ball of nerves just waiting to be fried. Seriously, I’m a walking lightning bolt. Don’t get too close.

And, oh.

NaNoWriMo. I’m supposed to be writing today. At some point. Every day this month. So I still have that to do. I should enjoy writing, but after a day staring at the computer, I’m not looking forward to starting at the computer more.

In fact, wut r werds?

The only bright spot in all of this right now is that there is pizza. Yes, pizza is my happy place. 1. Because it is very yummy and tasty and good, and 2. Because I do not have lift a finger to prepare it.

So thank you pizza men and women. Because…right now? Mom’s just not here.

Belonging

We almost bought a brand new house today. Drove an hour and a half northeast and spent all day touring a beautiful, half-built, small mansion in a spacious 1-acre wooded lot in the Poconos. Then we deliberated long hours on whether it was right, where we’d put the garden, the pool, the chicken coop, and how we’d arrange each room, whether to finish part of the basement as a play room for the billiard table, the foosball table, and the poker table.

We drove the neighborhood (not that there was much to drive, it’s not even done being built yet) and checked out the other houses in the area. We drove past the schools the kids would go to, and looked up their ratings on Niche. I even moved the money for the down payment into our checking account so we could write a check and get started. It’s fun to dream. It’s exhilarating to imagine new things and new places and new adventures. What could the future hold? Yes, we said! Let’s do this.

And then, five minutes before we were to sign the papers and hand over the money, pure terror gripped my heart.

Reality came crashing in. This isn’t my house. This isn’t my neighborhood. This isn’t where I belong! Help! Someone take me home!

*Cue the waterworks.*

We stayed in the area, had lunch, discussed our options extensively. I proceeded to spend the next two hours alternately in tears, convincing myself we shouldn’t do it, then recovering and convincing myself we should, then crying again at the thought of leaving our close-knit community where we’ve lived for almost 18 years. When we bought our house in 2003, we planned to stay for maybe 5 – 10 years. Introduce children to the mix, and it never quite seems the right time to move.

Eventually, we stayed here so long that everything is just…comfortable. I like our little house. (I wish we had more space.) I like our little yard. (I wish we had more land.) We have some of the best neighbors, one family we even fondly call our neighbros. (I wish the noisy ones behind us would move out…or at least learn to be more considerate.)

But our tiny school district has some of the most caring, wonderful teachers I’ve ever known – people I’m glad teach my children every day, but also people I’ve come to think of as friends myself. They live and work here, in this small community. And three blocks away? We have a lovely little park that’s home to the local community partnership’s Christmas tree lighting, fundraiser dinners, and monthly farmers’ markets. Our community library (and my part-time job there) would be a thing of the past. The coworkers I’ve come to know and love, I’d never see again.

We often catch some of our favorite neighbors walking past our house on their daily route – walking, walking, always walking. And these neighbors are special. Because they’ve shared in our pain (and our joy) with regards to a pancreatic cancer diagnosis. And that’s a special kind of bond, too. Not many people know what it’s like to travel that path.

Here, we have the kind of neighbors who will pick up your kids from school at the drop of a hat if needed, those who will watch your kids if you need to make an emergency trip to the vet (and our geriatric doggo is already older than most dogs his breed live to see), who will mow your lawn because you’ve been taking care of a sick spouse or child, who will stop by with fresh bread for no reason at all, who will bring you homemade soup when you’re sick (or homemade chili when your kitchen is out of commission because the entire thing is gutted and being renovated).

Here, our children have friends and familiar bike routes and sledding hills. They have parks and schools within walking distance. And even though they haven’t been able to see their friends in person in over a year (minus a few masked visits on the back patio), this is where I want to emerge from our quarantine. This is where I want to celebrate the miracle of science and medicine with our friends and neighbors. This is where I want to have patio parties and barbecues.

It’s hard to give all that up for the bells and whistles of a beautiful new house with its shiny floors and inviting white farm sink. (It was a beautiful sink.) How could we trade the comfort of a community we love so dearly for a brand new place that feels sterile by comparison? In a time when Covid has most of us needing comfort more than ever, I feel like a move to someplace new (though deeply desired on some level) would make me feel somehow more lost.

And so we drove home in silence, my husband disappointed and frustrated, me sniffling from the passenger’s seat. I ran out of tissues. There was a lot of crying. I couldn’t even feel relief once we’d made the decision not to buy because I knew I was disappointing the husband, and that’s a whole other level of internal grief.

All this to say – here? Here, I feel a sense of belonging I haven’t felt many places in my life. And maybe it won’t always be that way. Maybe someday the time will be right to move. Maybe now I can stop feeling this incessant urge to pick up and go. Maybe.

But for now? For now, this is where I belong.

Ingenious Inventions & Fearless Creators

I love art in all its forms. Paintings, sculptures, books, theater, movies? You name it, I can appreciate the work that went into creating it! So naturally I tend to align with other artists in our pursuit of making real the images from our minds. One such artist is one my very best and most talented friends for twenty-plus years. I feel so lucky I’ve gotten to watch her create one of the coolest toys I’ve seen to date. Meet MUB and his super fun Pittsburgh-area creator, Jess Bieber!

MUB is the Monster Under the Bed! No other monsters allowed!

LRS: Hi Jess, thanks so much for agreeing to appear on the blog today. I love the imaginative world, and I really think creating in any of the arts is currently one of the most undervalued talents in our society. I am in such awe of what you’ve done with MUB! I want to hear all about it.

LRS: First, what *is* MUB?

MUB says hello!

JB: MUB is a a spunky, fearless, courage-boosting plush pal for kids. He likes humans and their pets, but he does NOT get along well with other monsters. He is soft and furry so he’s great for cuddling, has a light-up charm on his collar to illuminate dark spaces, and his eyebrows are repositionable so he can be easily put into friendly-mode or defender mode, depending on your mood.

LRS: And what spurred you to create him? How did you realize this is something kids need? And something that might make parents’ lives a little easier? (Because, let’s face it—anything that helps keep the kiddos *stay* in bed at night is the miracle we need.)

JB: Family is at the center of our lives, so we like to create things with heart and feeling. One of the cool things about having kids is that you get to see the world through their eyes. It reminds you of how you used to be. Do you remember how crazy-active our imaginations were when we were young?

No matter how many generations you go back, there has always been a legitimate fear of the dark, unknown spaces at nighttime. Places like a closet or beneath the bed are mysterious, eerie voids in which hungry ghouls hide and wait for the moment when you turn off the lights. I used to take a running leap to my mattress so nothing could reach from under the bed to grab my feet.

What’s worse is that there is no real guarantee that being cocooned in a blanket pulled all the way up to your eyeballs is an effective barrier against any spooky creatures that could be lurking about. That’s when MUB comes to the rescue. He likes to be the only monster in the room so he scares all the others away.

And yeah, it’s so nice when kids can go to bed without a hitch. I’m hoping MUB will help parents out a bit, so maybe they can use that free quiet time to do something fun like catch up on laundry or dishes.

LRS: I don’t think most people realize what it takes for a startup company to create a physical product like MUB. I know *I* didn’t realize it until I’d heard all about your trials and tribulations throughout the last couple of years. Can you share a little about the process?

JB: Haha, books and books could be written about all this stuff.

It’s been an interesting journey, for sure. Conceptualizing an idea over coffee with your business partners is the fun and easy part. Following through and discovering the time and financial barriers to entry are more challenging. But if we’re going to do this, we’re going to do it right. That means vetting many vendors to find the right quality match. Safety testing – CE (international), PA, OH, and US. Copyright, trademark, ISBN and UPC codes, shipping and customs, taxes, packaging and shipping, website design, photography and videography… and not taking a paycheck the whole time.

I think it’s a fun lesson in learning how to be scrappy and prove you’ve got the grit to keep moving forward. Luckily I have the best partners and we won’t stop reaching for the stars because we definitely are driven to get our ideas out there into the world.

Friendly and fierce, MUB is always ready to protect his friends!

LRS: As a parent, I love everything about MUB, and you created him. So tell me a little about you and your history in art, illustration, and design.

JB: Aww, well thanks for loving MUB so much. He really is a fun character and we look forward to building in more helpful monster friends as his club and brand grows over time. He might not like monsters now, but soon he’ll let down his guard a bit to make room for some good, friendly monsters while he still chases off the imaginary, menacing ones.

I’ve loved making art since I could pick up a crayon and draw murals on the walls of the house. Angry as they were about the destruction, my parents were always awesome about nurturing my creativity and I decided to focus on illustration and graphic design in college. I was lucky enough to work for some really cool companies where I could develop my talents further, but, like my business partners, I always had this entrepreneurial itch to see how far we could take our own ideas.

LRS: I remember the murals on the walls of your old bedroom! I loved them! Even then, I was in awe of your artistic talent.

LRS: Can you tell me about MUB’s parent company, Glow Creative Innovations? What makes Glow unique?

JB: Glow has a big idea at its core. We hope to grow in success and join up with other like-minded creative people to help nurture and grow their ideas, too.

Originally, we wanted to be a brick-and-mortar art studio and coffee shop with classes and events that would bridge communities, give back, and bring people together. That’s all still on our bucket list.

No matter what we do, we are much stronger when we’re working with others. We can do so much when we stand with a group, pooling our talents, experiences, and connections so that we can take our ideas and fly together. Wherever we end up, it’s all about the love of the adventure, right? Maybe MUB will get us there. We can only hope that others will see his value and love him as much as we do!

LRS: Lastly, where can we find MUB to get him in time for Christmas?

JB: The pre-sale is now and the first batch of MUBs ever will be ready to ship on or before December 10th. The first 100 plushes sold will each get a free sticker sheet. Also, there’s a children’s book in the making, so follow us on Facebook or go to our site and sign up for our newsletter to get the latest updates and MUB Club news. A big thank you to everyone who supports us and we hope to bring you more fun and useful monsters in the future.

You can order MUB now at www.mubclub.com where imagination meets reality and children overcome their fears with a little help from a soft and cuddly monster.

Meet the Creator

More about Glow Creative Innovations and their other products can be found here

Lastly, meet Jess Bieber, creator of the silly and lovable monster with a purpose! She and I don’t get to see each other often, so we tend to text and FaceTime. Here she is with another plush toy that I can’t wait to see from Glow Creative in the future!

Where Dreams and Reality Collide

There’s a job opening in a microbiology laboratory where I used to work. I’ve said often to friends and family how much I missed working in the micro lab, how much fun the testing could be, how interesting the job. And yet…

I have no less than four headhunters who have emailed me about this position in the past 48 hours. It’s a contract position with the potential for permanent work. But do I want permanent work? Do I want to commit my hours to working for dollars instead of writing for none? Am I ready to give up on a dream of writing novels full-time to have the security and extra money a job outside the home would bring?

Before you comment, let me stop you. 1. I’ve heard all these arguments before, and 2. I’ve been having the same conversation with myself for days now. It’s not giving up on a dream to accept the reality of supporting your family and easing the financial burden by helping to bear the load. But there’s a lot to consider because taking a full time job outside of the house is more than just 40 hours a week. It’s also 7-10 hours of commute time. 

Beyond that, it’s giving up all the luxuries I currently have. No, not the financial luxuries. I’m talking about the school field trips I chaperone, the classrooms I assist in for fun activities, the holiday parties I can help plan for my kids. These are the things I can never get back, the things time won’t wait on. By going back to work full time, I’d be putting my kids and family second again – at least as far as time constraints go. (Certainly not in regards to feelings!)

So, while there’s a part of me that longs for the financial freedom a second household income would bring, and the knowledge that I’m helping my husband to bear the financial load a bit more, I think I’ll pass on the microbiology lab for now. The lab will be there in five years and in ten. My 8 and 12-year-olds will not. Time has a habit of stealing our youth and I intend to build as many memories with my kids as I can while they’re still young.

And writing? I will always have writing. Being home just allows me to pursue it more passionately.

So if you’ll excuse me, I have some faces to paint at the 6th grade school carnival in a half hour and rocks to paint in a 2nd grade classroom later today. Pharmaceutical microbiology and financial freedom can wait.