Tag: cancer diagnosis

Smooth Sailing

L. Ryan StormsLeave a comment

The problem with the type of cancer that can be managed-but-not-cured is that you never quite know when to update the masses that the patient is on an upswing and doing well. It’s occurred to me recently that I’m always quick to let everyone know when we’re riding that cancer train, but not always quick to update when the ride has gotten a little smoother.

Time to stop talking in metaphors, I suppose.

Nate is doing well. One and a half years after two very rough liver embolizations, and fifteen months of monthly Sandostatin injections with little to no side effects, I feel like it might finally be safe to say (yikes, is it ever safe to say?) that he’s doing well. The numerous cancerous tumors in his liver have shrunk significantly in size, he’s had an increase in energy, and he’s been active and engaged with life. Fishing? Every chance he gets, no matter the weather. Ice skating? Frequently. Good thing older kiddo is taking lessons and wants to be at the rink as much as humanly possible. Hockey games? Attending whenever he can. Work? Oh, yeah, I guess he’s been doing a lot of that, too. (But who wants to hear about work?)

He’s living. And for that, my friends, we are overcome with gratitude.

Additionally, as of this week, he’s been given official disability status as a veteran from his exposure to burn pits in Kuwait in the 90s, which means we now get financial assistance from the government in managing his cancer. This is exceptionally helpful as every injection (you know, the injections he’ll get monthly for the rest of his life, those injections?) costs $27,000 before insurance is factored in, which means we meet our deductible every year in January. So this turn of events is a welcome one.

Is it the government admitting, “Hey, sorry we’re probably responsible for your cancer?” Or perhaps it’s just their way of saying, “We might have had something to do with this. Oops.” Or maybe it’s, “Damn, this diagnosis sucks and we’re sorry it happened. Thanks for serving your country; we’ve got your back.”

I don’t know. I don’t think we’ll ever know. Regardless of the meaning behind it, the financial help is significant and we are positively, incredibly, overwhelmingly grateful for it. (Did I include enough adverbs there? Writers aren’t supposed to use them, right? Well, I’m really grateful. So there.)

So that’s the update. Nate is doing well. I typed it. Despite my fear of jinxing everything, I put it out there for all to see. Because you’ve all been with us on this journey. And you deserve to know. That bumpy train ride seems to have taken us to a port. And the seas seem fairly calm. Smooth sailing. At least for a while.

Thank you for being here with us, friends. Your love and your support has always kept us 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.

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.