Tag: pancreatic cancer

The Train

L. Ryan StormsLeave a comment

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.

Mystery Delivery

L. Ryan StormsLeave a comment

Yesterday, we received a mystery package in the mail. We receive a lot of packages* in the mail, as husband is an avid collector of many things fishing-related. I assumed the small manila envelope contained a fly-fishing tin of some sort as I’d seen several of those make their way through his hands recently. So I did what any good spouse would do and placed it at his work desk for when he came out of the shower.

A half-hour later, he sat at his desk, held up the package and said, “What’s this?”

How can you not remember what you’ve ordered on eBay? I thought.

Well. Because he didn’t order it.

“Mandee’s Lunchbox? I have no idea what this is.”

So I gave a sigh, took the small tin he’d unpackaged and read the text on the back.

Immediately, the two of us fell back to 2017 and our seemingly endless trips to Philadelphia for treatment not only for his rare pancreatic cancer, but to the Interventional Radiology Department of Thomas Jefferson University Hospital to check the drain tube that would eliminate the abscess caused by the pancreatic enzymes that leaked into his abdominal cavity after the surgery.

As part of almost every trip we took that year (19 trips in 23 weeks), we stopped either at Au Bon Pain or Dunkin’ Donuts somewhere along the way. Those treats were the highlight of our day, the only part of the whole miserable experience that we anticipated with any small piece of joy. Oh, for a chocolate croissant or a double-chocolate donut in those wretched times!

After reading the description on the back of the tin, we opened his Mandee’s Lunchbox to discover $50 in gift cards to Dunkin’, Starbucks, Panera, and Subway. And then we laughed because we’d thought enjoying those small things was unique to our situation, some small pleasure only we had managed to squeeze out of an utterly terrible situation.

We had no concept that these kinds of small treats could be so highly anticipated by cancer patients around the world. Mandee’s Lunchbox opened our eyes and reminded us, once again, that we’re not alone in our fight against this terrible disease that steals so much, and that even going through the worst of times, friends are still nearby.

Mandee’s Lunchbox sends anonymously, so there’s no way to know who might have sent your name to them. At least, theoretically.

Unless you use your powers of deduction on social media to find out which one of your friends ‘likes’ this organization, and then you realize who probably nominated you to receive a tin full of gift cards and smiles. (Then you send them a direct message full of gratitude because sometimes the smallest actions are the ones that mean the most.)

The last two weeks were rough. After his embolization procedure on the 21st, husband spent a couple of days in pain (which we expected), and then a week and a half running a generally low-grade fever that occasionally went as high as 102F (which was unexpected). He was miserable. To make matters worse? Migraines almost every morning.

We didn’t know whether this was the reaction they’d warned us might happen, whether this was a virus hitting him at the same time as the embolization (The two kids and I had bad colds literally the week leading up to his procedure. We did everything possible to stay away from him so as not to get him sick. We even tested for Covid, just to ensure it wasn’t that making its rounds in our household…), or whether this was a bacterial infection somehow persisting despite being on a prophylactic antibiotic.

We’ll likely never know. As of the last two days, he’s finally been feeling more like himself. (In fact, as I write this, he’s fishing. Yes. For real.) He goes for the second embolization procedure in 2 1/2 weeks, and I suppose we’ll know then if this reaction was more than ‘the norm’ where his body is concerned. I didn’t share most of this part on social media over the last couple of weeks (you might have noticed the increase in pet-related posts as a result) because I don’t know what to say. I don’t have the answers to the questions I know friends will ask. The doctors don’t know the answers. I don’t know the answers.

One of the hardest things about cancer is the sheer number of unknowns. For Type A planners like me, we need to be prepared. And there is no preparing for what’s next because…well…there’s no way to know what comes next. Reading patient studies (because, hey, that’s what I do) is alternately depressing and hopeful depending on the outcome, and each time I find an element that’s similar to our situation, I find just as many pieces that are completely different, thus rendering any comparison impossible.

So for now we’ll do what we learned to do in 2017. We’ll follow what the doctors ask us to do, live our lives, and cherish our loved ones each and every day.

Oh. And now we’ll probably make a few Dunkin’ Donuts trips…

Mandee’s Lunchbox is a local organization formed in memory of Amanda Faidley Layton, pursuing her wish to brighten the lives of other adults and families battling cancer.

If you’d like to make a donation to Mandee’s Lunchbox, you can do so by clicking HERE.

If you know an adult who’s battling cancer, you can nominate them to receive a tin from Mandee’s Lunchbox HERE.

* Not fishing-related. One package received earlier this week? Thanks to local friends of ours, an unexpected box arrived from Harry & David’s, days late, so the pears were a bit…um…squishy. We still found a way to use them…

How to Make Lemonade

L. Ryan Storms1 Comment

The day after husband’s oncologist used the ‘C’ word at his 4-year followup visit, he got up early to go fishing. (A common occurrence in our household, as our friends and acquaintances know well.) When he returned, he was mumbling to himself as he walked in the front door, but I caught only the tail end of the conversation as he headed through the house and to the shower.

“Just need to figure out how to make lemonade. That’s all.”

But making lemonade isn’t something you do with rotten lemons, and I’ve been pondering his words ever since. So I did something new today. I wrote an essay and submitted it for publication.

An essay.

Me.

I wrote an essay. Something that didn’t involve fictional characters, magic, and dragons.

I haven’t done that since my college days. But today, as my fifteen-year-old slogged through a 500-word essay on The Scarlet Letter (which, for the record, she hated, and let’s be real, who doesn’t?), I, too, tapped away at the computer keys, crafting a story of all we’ve been through in the past four years since Nate’s initial cancer diagnosis. Before I knew it, I had almost 1600 words of love, fear, support, uncertainty – pretty much everything that sums up life with a secondary cancer diagnosis in the middle of a worldwide pandemic.

Maybe it will go nowhere. Maybe it doesn’t need to go anywhere. Maybe I just needed to write it.

But I hope it’s accepted somewhere that will reach thousands of people, not because I want recognition, but because if my words can somehow help others who are also struggling through dark times, then I’ve succeeded in making lemonade out of some pretty nasty lemons. And that’s something.

Holding Patterns

L. Ryan Storms2 Comments

How do you begin a blog post you never wanted to write? How do you type the very words you never wanted to see again? How do you convince yourself that there’s anything good or fair or right in the world when you get the news that your loved one has cancer?

Again.

I don’t have the words. My heart has broken into a thousand million billion pieces and I…don’t have the words.

Nate went for his yearly oncology visit last Friday- 4 years cancer-free (or so we thought). Instead, we were met with a giant, nasty surprise – spots on his liver. Spots that weren’t there six months ago. Spots that have no business being there now.

There’s no way to describe the cold dread that washed over me at hearing the news – the literal icy sensation that swept from my head to my toes when the doctor said the word ‘cancer’ aloud.

“No, no, no,” I wanted to scream. “We did this already. We beat this. He’s healthy. We did this years before the pandemic. We shouldn’t have to do it now, again, in the middle of a global pandemic!”

But cancer doesn’t care what we think, how we feel, or what our plans are. So once again, our schedules have been cleared, and we’re in yet another holding pattern, burning fuel, awaiting test result after test result, waiting for some direction on where to land and what kind of crash to prepare for.

Hold your loved ones close, my friends. It only takes a moment for everything to change.

A Year in the Life

L. Ryan Storms2 Comments

It’s a very good day. An important day. An anniversary.

No, not a wedding anniversary, or a dating anniversary, or a birthday.

Today marks one year since my husband had a drain tube pulled after six months of complications from surgery to remove a cancerous tumor that invaded his pancreas.

One year.

The difference between this year and last is almost beyond comprehension. Last year at this time, it was a struggle to try to feel merry. We had Christmas lights on the house only because our neighbor was quick to climb on the roof to help. Our tree? That was because my parents were sweet enough to drive an hour to haul it in and put it up so we could decorate it. And the general atmosphere around here? While we were so very thankful for husband’s treatment and his doctors, we were still uncertain of the immediate future. Not that anyone can ever be certain of the future, but you don’t realize how much you take for granted until you’re steeped in worry every second of every day.

This year? This year he’s been caught whistling Christmas carols behind the bathroom door as he gets ready in the morning. The lights on the house were up a day after Thanksgiving. He’s giddy at the prospect of presents on Christmas morning. I’ve come home to find Christmas music playing in his home office as he works. He couldn’t wait to help me address the Christmas cards. He was excited to get the tree, put it up, and wrap the presents that went beneath it. In fact, this might be the first year that he wanted to be involved in seeing all the gifts before they were wrapped instead of settling just for knowing what was bought.

This is a man who has fully embraced the holiday and the feeling of family. So happy Winter Solstice! I’ll take 12/21/18 over 12/21/17 any day, for as grateful as I am for this day last year, I’m a million times more grateful for every moment we’ve had since.

Happy Holidays, all!

Screen Shot 2018-12-20 at 7.27.05 PM
See this? That’s a list of how many trips we made to Philadelphia for either a replacement tube or a drain check. The CVIR team at Thomas Jefferson knew us well. (And they are AMAZING.)

The Value of One Year

L. Ryan Storms3 Comments

Can you measure the worth of a year? How do you set the price? In dollars? In euros? In pesos? Can you put a price on it at all?

When you get a cancer diagnosis, you find out just how much your time with loved ones is really worth, and just how much more of that time you want. One year ago, we found out.

One year ago, my husband was diagnosed with a rare type of pancreatic cancer. One year ago, the doctors saved his life.

And mine.

If you want to know the value of a year, ask anyone who has faced this kind of diagnosis or worse. We were lucky. His was only a stage 1B. Prognosis is good. Our future is optimistic.

But that doesn’t stop me from asking ‘What if?’ a hundred-thousand times a day. What if things had been different?

So if you want to know what a year is truly worth, spend an afternoon with a cancer survivor and ask them to share their experience. And never take for granted another year, another day, another minute, again.

June 5, 2017 changed our lives forever. I have felt a level of gratitude every day of this past year greater than I could ever have imagined. If you want to know the value of one year, simply ask yourself, “What if?”

Storms full page program ad for Dance Centers
The ad we placed in this year’s dance program.

The Spirit of the Season

L. Ryan StormsLeave a comment

Happy Holidays, friends and family! This is the official 2017 Storms Christmas letter! (Look – I even went red and green! Festive!)IMG_2520.jpg

Before you start in on me about how lame I am for sending you to my blog for warm wishes of holiday cheer, remember it’s been a fairly tough year. Go easy on me. I opted to forgo sending cards this year for several reasons. First and foremost—time. As most of you know, there’s a lot going on and I’ve been juggling kids’ school schedules, projects, dance classes, various doctors appointments, dentist appointments, and writing in attempts to get it all done. I’m tired! Secondly, suffice it to say that I’m not feeling all that jolly this year, so the thought of addressing and stamping seventy cards just isn’t…well, in the cards. And lastly, I don’t wanna.

So, there you have it.

Now, onto the more cheery parts of this ‘letter.’

We are still here. 2017 hasn’t managed to knock us out just yet. (Give it time. I guess there are two more weeks left in the year, but we’re hoping for the best.) Nate still has a drain tube in his abdomen. It’ll be 23 weeks this Friday. Our next appointment with the good docs at Interventional Radiology at Thomas Jefferson University Hospital is this Thursday, but neither of us holds high hopes for the drain tube being removed. And that means we’re probably going into the new year with a drain. I cannot even begin to count the ways that this sucks.

My kids are amazing. No, seriously. They are. They have handled things this year that no adult should be asked to handle. They have done so with courage and grace and I want to award them gold medals. Why is there no ‘Best Kids on the Planet’ award?

Nate has gone back to work on a strictly work-from-home basis as of December 4th. This is great news as it no longer means we are ready to pawn off heirlooms in order to buy groceries… Hooray for food without debt! (And for companies and bosses who are amazing and accommodating!)

I am still writing, tweeting about writing, and—apparently—blogging about writing. I finished up my third manuscript this year while continuing to pitch manuscript number two to literary agents. So far, no major progress. I had several requests for a full read (which is a huge step in the right direction) and some really great feedback on said manuscript. But ultimately, no cigar. Hoping to start pitching book number three by early next year. In the mean time, I’m 20k words into my fourth manuscript and moving right along. What’s a writer if she’s not writing anyway? (Oh, that’s right. A stressed mom who is barely holding it all together. Yes, okay, I suppose I’m that, too, these days.)

Now onto the more serious parts of Christmas, or at least the more sentimental parts. Despite our rollercoaster of a year…

Wait. That implies that there were upswings…  Let me rephrase.

Ahem.

Despite our alpine slide of a year, we are incredibly thankful for so many things. Amazing friends and family who have been there for us in every possible way. They’ve provided emotional support, emergency babysitting and pet care, gifted us with gift cards to movies and ice cream shops to help keep our lives as normal as possible, helped with homework and school drop offs and pick ups. They’ve cut our grass and shoveled snow from our walkways (not in the same day, of course) and they’ve paid anonymously for our kids’ dance classes.  They’ve listened when I’ve felt alone, offered a shoulder when I needed to cry, and handed me a pillow when I needed to scream. They’ve offered financial help and assistance navigating health care and disability insurance. They’ve helped us keep records for our taxes and offered to lend us  money (because let’s face it—we’re not rich enough to actually own heirlooms to sell off).

And this is what I am most thankful for this Christmas. I am thankful that we have a network of friends and family that’s bigger than the heart of the grinch (after it grew three sizes) and people who care so very much. We are so grateful.

I hope 2018 is a better year. For you, for me, for all of us. Love to all, family and friends. Thank you for giving us something to be thankful about this 2017. I wish you a happy and blessed holiday season!

The Storms Family

IMG_2510
2017 in a nutshell.

Falling Down

L. Ryan Storms4 Comments

It’s Saturday. More specifically, it’s the Saturday after Thanksgiving. I’m supposed to be happy. We are full-fledged into the Christmas season. I should be baking Christmas cookies (and eating half of them) while my husband strings the lights outside and I watch from the warmth of our living room. The kids should be bouncing off the walls and playing Christmas music. Instead, we’re doing nothing we should be doing and it hardly feels like Christmas at all.

In fact, Thanksgiving, with the exception that we got to spend it with my family and my mom made another fabulous meal for the books, pretty much sucked. Older child had the stomach virus two weeks ago and now quite suddenly has severe panic attacks (most likely due to her father’s prolonged physical illness whether she recognizes it or not). She couldn’t enjoy Thanksgiving dinner and didn’t even manage a bite of dessert. Younger child had lice three weeks ago (that was fun) and we’re still vigilant with our checks to make sure we’ve taken care of the issue. And husband now seems to have a stomach virus on top of all else. It’s 11 a.m. and he’s still sleeping. My guess is that he was up all night. I couldn’t tell you for sure because older daughter has taken his place in our bed the last three nights so that I could make sure she got real sleep.

I have so much to be thankful for, but it’s really difficult to remember when everything around you seems to be falling apart, falling down.

Falling Down. I might be showing my age here, but remember that Michael Douglas movie from the early 1990’s? The main character essentially has a nervous breakdown and starts randomly killing people before ultimately taking his own life. I was 15 or 16 when I watched it with my brother on t.v. one night and I remember being utterly disenchanted. I had just wasted two hours of my life to watch a guy go crazy and shoot people up before killing himself? What was this crap? What was the point?

falling-down

Let me just say: I get it.

I get it. I get it. I get it. (No, no need to call anyone to have me psychiatrically examined. I won’t take that route.)

Watching the outside world tank over the last couple of years has been depressing enough and being part of the #resistance movement has been taxing (especially as a major introvert who just wants a blanket and a good book, dammit!), but when you’ve got life also screwing you over on a personal level at the same time, it’s almost too much to take.

Remember when I thought seven weeks with a drain tube was a long time? Well, my husband has had one in for 19 now. His next appointment is December 7th, so that will bring our total to at least 21 weeks. Short-term disability runs out on December 2nd. He’s trying to figure out if he is able to go back to work, even with his drain in, and I’m not sure he’s at that point yet. His sleep is miserable (as a result, cognitive function isn’t always top-notch), he’s frequently in pain, and he’s irritable (which might not be the best state for the customer-service aspects of his job). We were supposed to talk it over last night, but talking it over wasn’t a possibility when he ended up battling a stomach virus all night, because a tube in his abdomen apparently wasn’t enough misery. Because he needed another hurdle.

Because apparently the universe isn’t done throwing shit at us yet. I keep wondering how much more it could possibly have in store, but I’ve learned it’s not good to ask the question aloud.

Despite it all, I am still thankful. I am. I am thankful for medicine, for incredible doctors who have brought us through the most difficult times and quite literally saved his life. I’m thankful that, by some miracle, we managed to discover the cancer early. I’m thankful for others’ stories who help us get through. I’m thankful for friends, old and new, who continue to offer support of every kind. I’m thankful that he didn’t need to follow his surgery with radiation or chemotherapy. I’m thankful that a miserable drain tube can prevent the need for another surgery.

I am thankful. And nothing the universe throws at me will ever change that.

pancreatic symposium
He’s in the third row, second one in from the left. Two thumbs up because even with a drain still in, he attended the 12th Annual Pancreatic Symposium at Thomas Jefferson.