The Perfect Timing
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.
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.