Resilience Against All Odds

These flowers should have died. Instead, they are thriving.

We recently had the house washed. I’d been procrastinating having it done–three years to be exact.

A few weeks prior, I planted some zinnias from seed. I’ve become smitten with this flower and couldn’t wait to enjoy some home-grown beauties.

For weeks, I intently watched as the seeds sprouted little tiny shoots, then began to grow taller as they reached for the sun–all while sprouting big, luscious leaves along the way.

I dreamily anticipated the day the mail lady would walk up and get to enjoy the beautiful blooms as she dropped mail in our box. I envisioned her appreciating the sweet little surprise that greeted her–a nice contrast to the ferocious, yet harmless, dog that typically caused her to quicken her pace.

Then came house-washing day.

The contractors arrived and set to the task at hand. I went out and asked if I could assist by moving anything in the way out of their path. They politely declined stating they would handle it, so I went about my day.

By the time the contractors left, the house was sparkling. I didn’t waste any time offering high praise through an online review.

Fast forward a few days.

I walked off the porch to see my once beautiful, thriving zinnias looking pitiful. Brown spots covered the plants. The chemical used to clean the house had destroyed them, I was certain.

It left me devastated.

They were just a few plants, but I had watched them grow for weeks eagerly anticipating the day they would bloom. All the effort for naught, or so it seemed.

I couldn’t let my zinnias go down without a fight. So, I did what I could to give them a chance. I (painfully) pulled out the plants that were beyond repair and removed the dying leaves hindering the potential of the plants that remained. Every couple of days, I continued the process.

Then one day, I spotted it: a bud. And a few days later, a couple more.

I couldn’t believe it. The zinnias had survived!

Plants highlight so much about life to me. The zinnias chose resilience. They could have easily given up and succumbed to the chemicals threatening to destroy them, but they fought. Once merely surviving, they are now thriving.

How often in life do we choose to give up and take the easy path?

I think back to my desire to stop chemo in December. That would have been the easy choice. But what would I have missed out on if I hadn’t pushed through? Maybe this pot of zinnias would have never been planted. And maybe I wouldn’t have realized just how glad I am that I kept up the fight instead of taking the easy path.

Though the easy route is often tempting, it’s rarely rewarding.

Let’s choose the path that leads us to thrive instead of simply survive.

Running For Answers

The countdown is officially underway for a 5K very near to my heart.

On September 22nd, I will be ‘Running for Answers’ in Philly for the Desmoid Tumor Research Foundation’s 5K Run/Walk to End Desmoid Tumors.

While I had high hopes I’d be running the race this year, I am grateful to be able to participate as a walker.

The run/walk will cap off a two-day-long event–a weekend I have looked forward to all year.

Connecting with Fellow Warriors

DTRF Annual Patient Meeting

The weekend will kick off with the DTRF’s Annual Patient Meeting. The event is an opportunity for desmoid patients and their caregivers to connect with one another as well as learn from doctors and researchers working toward finding a cure.

Source: DTRF.org

While I’m excited to learn, I am more excited to connect.

I have yet to meet anyone with a desmoid tumor in person.

Every year only about 900 patients (3 in 1 million people!) are diagnosed with [a desmoid tumor] in the United States.

DTRF.org

While I want to soak up as much as I can from the experts, I am most anxious to be in a room full of people who have fought or are currently fighting a similar fight.

I’m ready to celebrate with one another, share some hugs, shed some tears (there will most certainly be tears), as well as learn from and cheer one another on.

I’ve already experienced how special it is to connect with fellow warriors online. This is an opportunity I cannot pass up and am so thankful for the DTRF’s efforts to make this day possible.

5K Run/Walk to End Desmoid Tumors

Source: runningforanswers.org

The day after the patient meeting, patients, caregivers, friends, and family will gather to participate in the Running for Answers 5K run/walk to raise awareness for desmoid tumors.

Participants are encouraged to rock knee high socks during the race. I need your wild, crazy, fun ideas! Drop your thoughts on what I should wear in the comments.

If you are interested in supporting the efforts of the DTRF alongside me, you can donate directly to the DTRF.

As a rare disease patient, I am incredibly thankful for the DTRF.

1 in 2 rare diseases don’t have a foundation or research support group.

Global Genes Rare Facts

The DTRF is a resource I have turned to time and time again. Thanks to their efforts, I am confident that one day we will find a cure.

Surrendering That Which We Cannot Control

Summer is in full swing. The month of July is full. Plenty of fun awaits. So do some important test results.

Those upcoming tests periodically cross my mind. When they do, it’s not unusual for my mind to begin to ponder:

  • Is that odd sensation in my leg a sign of the tumor beginning to grow?
  • Has the chemo done all it can do for me?
  • Will the MRI reveal something about my ankle the X-ray didn’t?

Right now, I don’t have the answers. And there is some relief in the unknown.

But the answers to those questions are coming, ready or not.

Emotions fall at both extremes–from terrified of the unknown to expectantly hopeful. It’s all part of the process.

There is no denying the hope I feel inside for a positive outcome. It’s also impossible to fully suppress the fear of a bad outcome.

And so, as the questions swirl and the answers draw near, I am working hard to do the only thing I can really do: surrender that which I cannot control.

And so, as the questions swirl and the answers draw near, I am working hard to do the only thing I can really do: surrender that which I cannot control.

While I must continually remind myself of it, God’s plans are infinitely better than any I could devise on my own. He already knows what the future holds. God is not some distant figure; He is present in the here and now.

I trust Him with the outcome–good, bad, or indifferent.

The way I remain tethered to this truth is by spending time in God’s word and praying specific prayers for needs both big and small.

It’s when I am distracted from this truth that I seek to take control of the situation. Doing so has only ever ended in heartbreak for me. Creating false narratives in my head about when my last round of chemo will be or what the test results might show is a dangerous path to walk. Instead, I hand it over to God.

Surrender. Relinquishing control. It sounds powerless, like a weakness.

But I’ve experienced the exact opposite. Through surrender, I believe we are given more life, more freedom, more hope.

Through surrender, I believe we are given more life, more freedom, more hope.

As a person who has to continually reject my need for control, being pushed to the point where I have no other choice but to surrender has been a gift.

God desires our surrender–it is how we show Him our love. In return, He helps us to live more abundantly.

What I Read: June

I am not someone who gives out five star ratings easily. This month was truly full of exceptional writing. Aside from Kristen Hannah, these were all new authors to me and I absolutely plan to read more of their work. Any recommendations on what to read next by these authors? Leave a comment so I can add it to my list!

One Day in December by Josie Silver

Rating: four stars

Thoughts: This love story was a good just-for-fun read. The characters will draw you in making it difficult to put the book down. It touches on themes of love, loss, grief, friendship, and forgiveness. I was worried I was going to be unhappy with the ending, but really enjoyed how the book came together. My recommendation: save this one for winter. It’d be a great book to cozy up with on a snowy day.

The Great Alone by Kristen Hannah

Rating: five stars

Thoughts: Someone recommended that I read this as a follow-up to Educated. The advice was spot on. Set in the remote wilderness of Alaska, there are several parallels between the two books. Although The Great Alone is fictional, it tells a beautiful coming of age story. We witness the main character grow from a young girl into a young adult and experience how she uses an atypical set of circumstances – growing up in a remote wilderness while coping with an abusive father and a mother that loves her father too much to leave him – to find her way in life.

Where the Crawdads Sing by Delia Owens

Rating: five stars

Thoughts: After being roughly 650 in line at the library, my hold came up! I didn’t waste any time diving into this book. Until I got past the first 50 pages, I was hesitant, but as soon as I got to know the characters and plot line, I was all in. This book is beautifully written. The author knows the setting well – a marsh on the outskirts of a southern town – and describes it so eloquently you truly feel transported back in time. If you aren’t a fan of flowery writing with lots of description, this may not be the book for you. I was drawn into the story by the challenges the characters faced and the mystery and suspense woven into the novel. It left me on the edge of my seat until the very last page.

The Writing Life by Annie Dillard

Rating: five stars

Thoughts: A perfect review of this book has already been written and can be summed up as such:

“For non-writers, it is a glimpse into the trials and satisfactions of a life spent with words. For writers, it is a warm, rambling conversation with a stimulating and extraordinarily talented colleague.”

The Chicago Tribune

July’s Reading List:

  • The Next Right Thing by Emily P. Freeman
  • The Right to Write: An Invitation and Initiation Into the Writing Life by Julia Cameron
  • Breathe Again: How to Live Well When Life Falls Apart by Nikki Hardy (I’m on the launch team for this book, which comes out on August 6th – so expect to hear lots from me on this one! Can’t wait to tell you about it.)
  • This Is How It Always Is by Laurie Frankel
  • Better Than Before: Mastering the Habits of Our Everyday Lives by Gretchen Rubin

Planning to add any of these books to your list this month? If not, what’s already on your list?

Growth in Unexpected Places

For over a year now, I have strapped myself into two braces–one for my knee and one for my ankle–on a daily basis. Three times per brace, per day. When done perfectly, it takes 4.5 hours. It’s a major chunk of my day.

Lately, I’ve begun to wrestle with these braces. Some mornings/afternoons/evenings, I have to mentally battle with myself to do the right thing: get into the brace, set the timer, resist the urge to give up and do all the things I’d rather do.

It’s not always easy, but it’s always worth it.

One year. It can seem like an eternity some days, but also disappear in a flash.

I never imagined these braces would still be part of my life at this point. But here we are.

And this is what I know now: growth comes from unexpected places.

These braces have taught me some important lessons I hope to never forget. And I think they may encourage you, too.

Lasting Change Takes Time

We live in a world that demands everything now. Overnight results. Quick fixes. Minimal effort required.

But real change–change built to last–takes time.

When I first received my knee brace, the best I could do was crank the brace to about 20 degrees. Today, it’s almost impossible to know how I am doing (in the very best way). While the brace is capable of cranking all the way up to -45 degrees, it stops tracking progress at -20.

I’m well past -20, but it’s taken me months to get there.

Day-to-day, it’s been nearly impossible to see or feel any real progress. But when I step back and review the progress of a few months, it’s astounding.

Little by little, my leg has steadily improved.

A quick fix wasn’t possible. Slow and consistent stretching has gotten my leg back on track.

Overnight results aren’t realistic. Lots of hard work and dedication got me to where I am today.

There is still progress to be made. It requires continual effort. But that little-by-little progress is amounting to change that lasts.

Whatever change you are seeking to make in life, let this serve as your reminder that good things take time, and hard work adds up.

I Can Do Hard Things

I recently listened to a podcast by Nancy Ray titled, “You Were Made For Hard Things.” It came at the perfect time.

As of late, it has taken significant willpower to get into and out of my braces.

Recently, I had some additional stretches added to my daily routine. Another 30 minutes of my day dedicated to working on my leg and ankle mobility.

It’s demanding.

Some moments, it feels like too much.

In those moments, I question if I can keep doing this.

But I have no choice. I am the only one who can do this. No one can do it for me. And so, I push onward.

This verse appeared in my daily reading the day I started writing this blog post. It’s gentle reminders like this that help me to keep going.

Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.

Romans 5:3-4

There is much to be gained by getting through the hard things in life. When we push through the hard things, we reap the reward. For me, that’s added mobility.

You can do hard things. Come back to this reminder every time you need it.

Each Day is a New Beginning

I’ve learned that my mind is a powerful tool in the fight against this disease.

It can work both for me and against me.

When I allow myself to be convinced that I can’t do something, I fall apart.

It’s impossible to be mentally tough all the time.

There are days that I start to slip. I begin to question. On those days, the slope becomes very slippery.

When it comes to my braces, on the days I convince myself I can’t do it anymore, I fall apart. I lose steam.

The truth is, I don’t want to do this anymore. But choosing not to put in the work isn’t a choice I have the luxury to make–not if I want to finish the race.

So, I keep pushing through. I give myself the pep talk that I can do hard things. I find ways to pass the time that allow me to forget what I’m really doing (reading, writing, etc.).

Routines also help. They take my mind out of the equation. I simply do what I am conditioned to do. I get in my braces and eliminate the option to decide not to. Routines keep me from questioning.

Some days, this works. Other days, it doesn’t.

Periodically, the mind wins, and I decide to go to bed instead of completing my braces.

But here is the most important thing. On the tough days, I don’t beat myself up about it. I remind myself that we all deserve grace.

Tomorrow is a new day. And each new day offers a brand-new start.