Mystery Delivery

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

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

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.

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.

A Year in the Life

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!

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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.)

Indie Author Storms

Indiana_Jones_in_Raiders_of_the_Lost_Ark
I’m no Indiana Jones.

Maybe it doesn’t quite have the ring of Indiana Jones, but I think Indie Author Storms has a nice sound to it. So why did I decide to go indie and what’s next?

I’ve been writing seriously for seven years, querying for four, and have four completed manuscripts—some of them with quite wonderful feedback from agents and editors. And until the last year, I really wanted to take the traditional route to publishing.

So what changed?

Cancer.

Cancer is one hell of an eye-opener. And when my husband was diagnosed in April of 2017, it didn’t just change the rules; it changed the entire game. He’s doing well now—a year and a half cancer-free. There’s not a day that goes by that we don’t celebrate this. (Insert happy dance emoji right here!)

But his diagnosis wasn’t all.

At the beginning of my foray into Writer Twitter, I made friends with a wonderful professor and writer who had been diagnosed with stage 4 cancer. She documented her journey in life, and through diagnosis, and I had the pleasure of beta-reading for her about a year and a half ago. As with most interactions on social media, we dipped in and out of each other’s profiles here and there, commenting and leaving digital hearts in our wake. I learned only recently that she passed away in June.

 

Before she succumbed to the terrible disease, she followed her dream and published Blooming Out of Darkness: A Memoir about Cancer, Spirits, and Joy. The book, which sits on the bookshelf beside my piano, is a stark reminder each and every day—a reminder that we don’t always have the time we think we have. Between Alicia’s story and my husband’s ordeal over the last year, I’ve decided that it’s time to take the next step in the journey to authorhood. 

There’s a beautiful change in perception that occurs when you reach your forties. (Okay, I’m not quite there, but I’ve got less than a year, so…) You begin to care less about what other people think or what other people would do in any given situation, and so much more about what you feel and how you can be good to yourself.

Indie authorhood is me being good to myself. I’m ready to have the fun, to release a book baby into the world, to take the next step and grow as an author. A Thousand Years to Wait is my gift to the world, yes. But it’s also a gift to me. And I hope we can enjoy it together.


A Thousand Years to Wait will be released on April 30th, 2019. You can add A Thousand Years to Wait to your Goodreads list here. Check back for excerpts, teasers, a cover reveal, and more! I’ll be updating regularly over the next six months.

The Value of One Year

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.

2017 Stats

Hey, writers and readers! It’s once again that time when everyone you know in the writing world looks back and reflects proudly on their accomplishments throughout the past year. I’ll admit that when I look at the writing statistics of other writers & authors this year, I immediately relapse into another bout of Imposter Syndrome. Just who do I think I am, anyway?

Sometimes I don’t feel like I’ve accomplished very much at all, and that’s why I decided to publish my list of 2017 statistics. Given all the things that occurred in the Personal category, I guess I didn’t do so badly in the Writing category all in all…

Writing

Manuscript words written: >71,000
Manscripts queried: 1
Query rejections: 40
Query no responses: 9
Requests for partial: 3
Requests for full: 2
First draft manuscripts finished: 1
Second draft manuscripts finished: 1
Third draft manuscripts finished: 0
First draft manuscripts started: 1
Total accumulative completed manuscripts (2011-2017): 3
Writing conferences attended: 1
Online pitch contests entered: 3
Writing friends made: too numerous to count
Blog posts written: 32

Professional

Jobs applied for & not offered: 2
Internships applied for & not offered: 2

Political

Letters to congress sent: 110+
Rallies & marches attended: 2
Petitions signed: A lot
Political posts on social media: enough to annoy a lot of people

Personal

Days caring for cancer survivor: 209
Trips (as driver & caregiver) to Emergency Room: 3
Days spent in hospital with loved one: 11
Trips to Philadelphia for medical care: 23
Days as Mom: 365 (24/7)
Lives led: 1

The Spirit of the Season

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

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.