Month: January 2019

When my doctor first suggested that I stop chemotherapy and take a break from treatment for a while, my immediate reaction was fear.

What if I lose my hearing? What if my tumors grow?

One of the benefits of being on treatment was that it allowed me to feel like we were doing something to stop (or at least delay) the progression of my disorder. Most patients end up on the drug I was on for years, so the idea of “taking a break” from it never crossed my mind.

Despite my concerns, my doctor urged us to trust his recommendation and give my body a rest for a few months.

Little did we know that a “few months” would turn into a year and a half.

And little did anyone know that we would make the most out of our newfound treatment free existence by quitting our jobs and traveling the world together.

In between trips I continued to have MRI’s and hearing tests every 3-months. We kept a close eye on my condition, but the growth was slow, and my hearing remained stable.

I was okay.

Day two of officially living back in Orlando meant it was time for my MRI and hearing test again. After the growth on my previous scan, we knew it was possible that I would end up having to start chemo soon, but as my doctor went over my new scan, he claimed that it was probably ok to hold off for a few more months. He even offered that I might be able to wait until the summer to get back on it.

I was thrilled!

We would have a chance to get settled at home before needing to face our medical world again. I’d get to feel normal for at least a little longer.

The next night I got a call from my doctor in Boston.

If you ever get a call from your doctor after hours—you know its bad news. 

He explained that they received the final volumetrics report (a special analysis that measures the volume of the tumors) and that there was quite a bit more growth than they initially thought. 

A lot more.

Thankfully the type of brain tumors associated with NF2 are typically small and slow growing, but that also means it’s tricky to detect growth. It’s easy for doctors to misinterpret a scan as stable, which is why the volumetrics analysis is so helpful.

Usually, the full report is ready in time for my appointment, but this time it was delayed by a day.

Unfortunately, that one day was enough time for me to get attached to the idea of avoiding treatment for a few more months. 

I accepted the good news a little too quickly.

As my doctor discussed the new chemotherapy schedule and dosage he wants me to try, I couldn’t help but feel disappointed. 

Not just that my tumors had unexpectedly grown so much…

But that my break was quickly coming to an end.

I must admit I’ve grown accustomed to feeling like a normal person again. After being thrown so suddenly into a medical crisis 3-years ago, I never dreamt I would have an opportunity like we had this last year and a half. 

Other than my routine scans and tests, I had the chance to forget about brain tumors and hearing loss. I got to explore the world, take risks, and be a regular 26-year old. 

I got to feel like me again—a temporary second chance.

I’m lucky. 

One of the first things my doctor said on the phone was that most patients barely make it 6-months off of treatment before needing to get back on it.

I made it 18-months.

But alongside my gratitude for my surprisingly long break, it’s hard to accept that it’s over. 

This last week has been rough. 

From talks of growing tumors, fertility decisions, and preparing to start chemo within the next week or two, it’s been a harsh adjustment. Throughout the tough reality we faced these last few days though, I’m amazed at how perfectly God has taken care of us.

When I had to start treatment a few months after my initial diagnosis, we were still in so much shock that we barely had a chance to catch our breath. We were in constant survival mode and didn’t know how to fit our original plans into the life we were being forced to live.

This time though—it’s different.

It may feel sudden and overwhelming right now, but in reality, we’ve been preparing for this since the day of my last infusion.

We have the upper hand. We know what to expect. We knew it was coming.

Emotionally we’re stronger, and mentally we’re wiser.

God has provided for us in every way and has continued to place specific people in our lives exactly when we need them.

He’s given us constant reminders that He is in control. 

He’s got us.

And every time I start to doubt, I remind myself of the perfect timing surrounding “my break.”

If I hadn’t stopped my infusions when I did, we never would have been able to see the world.

We finished our traveling stint treatment free.

I didn’t lose my hearing. 

My tumors didn’t grow too much.

We had the adventure of a lifetime together. 

Now we’re ready.

I’ve been on a safari in South Africa and circled Stonehenge in England.

I’ve gone paragliding through the mountains in Switzerland and strolled the streets of Paris at night.

I’ve ridden the world’s fastest roller coaster in Abu Dhabi and gazed up at the world’s tallest building in Dubai.

I’ve seen the northern lights dancing in Iceland and toured the canals of Amsterdam.

I’ve frequented biergartens in Germany and searched for fairies in Scotland.

I’ve dined on Pasteis de Nata in Portugal and Churros con Chocolate in Spain.

I’ve enjoyed free-flowing Guinness in Ireland and ate grapes fresh off the vine in Italy.

I’ve played with LEGOS in Denmark and goats on the beach in Greece. 

I’ve explored shrines in Japan and fed elephants in Thailand.

I’ve lived more life in the last twelve months than I ever thought possible.

To say that 2018 was a big year for us is an understatement.

Before we began traveling, I was afraid of pretty much everything. “Risk taker” would never be a phrase you would use to describe me, and I was convinced that something terrible was going to happen to me while we were abroad—especially regarding my health.

Change was not my friend, and I stuck to stability like glue.

But you know what?

I made it.

And aside from a few minor issues with my hearing, none of my fears came true.

Traveling has made me braver. Traveling has made me better.

Straying from my plan doesn’t feel quite so overwhelming anymore—it even feels a little bit normal.

This year has shaped everything for me. It’s taught me how to let go and lean into my uncertainty.

I’ve learned the value of taking chances and seen the blessing of living an unexpected life.

When I first started my blog, I knew that God was encouraging us to take this leap for a reason. I had no idea what it was going to be, but that was ok—the unknown was part of what made this year so fun.

And at the very least, I knew we would have an incredible year experiencing the world together.

I chose the name “Being Positioned” because I wanted to hold onto the idea that God is going to use my condition to position me for something greater. And I knew that our traveling was just the beginning of that process.

Every struggle, every adventure, and every interaction this year has been part of my “positioning”.

So, I’m starting a non-profit. 

I’m not ready to announce what it will entail until we officially launch later in 2019, but I can tell you that it’s a direct result of our traveling and even more so a result of me having NF2. 

Despite a year of learning to trust God and take risks, I’d be lying if I said I’m not terrified of taking this next step.

Once again, I’m surrounded by so much uncertainty.

Once again, I’m very far from my original plan.

But, once again, this is the fun part—the part where I have to sit back and trust the shift God is making in my life.

If I’ve learned one thing in 2018, it’s that the more you let go, the more God can do. 

Even though this next year won’t be filled with wild animals, trying new foods, and exploring different countries, I have a feeling that this new adventure might be even bigger than the last one.