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My New Normal

Sometimes I forget what my life used to be like…


What did I worry about before brain tumors came into the picture?


What was it like being able to hear people whisper?


How nice was it to not hear ringing in my ears?


It’s so strange to think back on just three years ago when I never even considered having an MRI and thought I had at least fifty more years before hearing tests would become a routine part of my life.


I can’t believe how quickly this has become normal to me.


A year ago, the thought of my tumors growing terrified me. Like even the tiniest growth made me fall apart.


Having MRI’s and hearing tests every 3-months left us on a constant emotional rollercoaster. We were living our lives a few months at a time, and with each new round of scans, it would reset again.


But somehow, miraculously, it doesn’t feel like a crisis anymore.


This is just my life now.


Over the last year, my MRI’s have shown consistent growth on the tumor affecting my good ear, but nothing significant. My doctor even let me take a 6-month break between tests last time!


That may not sound very big, but for me, it made a huge difference. I finally had a chance to stop worrying about results for a bit.


It broke the cycle.


After my wonderful break, it was time for my most recent round of scans.


For results to truly be good, my tumors would need to be gone. My hearing would need to be restored and my tinnitus silenced.


I would need to be cured.


Of course, that’s not my life anymore. My good news bar has substantially lowered.


It turns out my larger tumor has grown again. My hearing is stable though, and we found out the rest of my body (other than my spine) is tumor free.


But because of the tumor growth, I’ll have to start treatment again in the not so distant future.


So, the results were mixed.


Not exactly good, but not too bad either. 


Yet somehow, I left my doctor feeling utter relief. When not even a year ago I probably would have left my appointment in tears.


Gradually, emotionally, somehow…I’ve adjusted.


Bad news doesn’t feel quite as big, and I’ve come to accept that this is what my life looks like now.


Last December I wrote a post called, “The Life You Almost Lived” (found here). I wrote it when my tumors initially started to grow after stopping treatment.


Everything felt overwhelming.


I thought my happiness level had peaked—like each year was going to get harder and harder.


Physically, that’s probably true. My disorder is progressive, so it has no choice but to get worse over time.


But how I handle it emotionally and mentally WILL get better.


Somehow through all of this—because of all of this, I have managed to become truly happy.


Traveling has served as an invaluable distraction this year, and it’s shown me the importance of living beyond my condition. Of pushing myself past my limitations and letting my life be more than just what happens in between my doctor appointments.


Instead of offering the usual “good luck” or “praying for good news,” a wise relative of mine said the following phrase to us before getting my results last week:


“I hope that the more you learn, the less scary it becomes.”


Her daughter is currently battling cancer, so their family is all too familiar with dealing with this world.


As we walked out of the hospital that day I thought about her well wishes and how accurate they are for us.


All of this has become less scary. A lot less scary.


And as the scariness has waned, we’ve learned to enjoy our lives within the circumstances we’ve been dealt.


Somehow, over time, our new normal doesn’t look so bad after all.


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