How a Brain Tumor Ruined My Life and “Gifted” Me a Valuable Lesson at the Same Time

You can deal with more batsh*t than you think

Don’t pray for an easy life. Pray for strength to endure a difficult one.

~ Bruce Lee

I was diagnosed with a 2.5cm acoustic neuroma, a rare, “benign” brain tumor, in March 2011. I still wish to God I had never had this thing in my head or suffered for over a decade with the fallout of having something in my head that had no damn business in there. But I’m still here in 2021, and my batsh*t brain tumor journey has “gifted” me a lesson about what I am made of.

It’s a long arse story that is still unfolding. But I will give you the highlights.

It wasn’t so bad at first

My descent into brain tumor hell began with simple facial numbness on the entire left side of my face. What does that feel like? Well, it’s like the horrible feeling you have after your dentist has given you a shot of Novocaine prior to a tooth extraction or a root canal.

Yes, the left side of my lips feel constantly swollen and fat.

Yes, I couldn’t chew food on the left side of my face. Because if I did, food got stuck and lost.

Yes, it was nonstop from the moment my eyes fluttered open until I drifted off to sleep.

But at least this symptom was manageable, right? At least my brain tumor was “benign,” right? At least it won’t kill me today, right? At least.

Hell was still to come

After several consults with neurosurgeons, I was given two options on how I could choose to proceed with this “benign” brain tumor:

  • Brain surgery, which could lead to hearing loss and damage to the facial nerve. In other words, facial dysfunction and ugly deformity.
  • Gamma Knife, a radiation treatment, where 201 beams would be shot into that damn thing in my head in an attempt to halt its growth. This option promised to protect my hearing in the left ear and save me from the horrors of a damaged facial nerve. Plus, it was outpatient with just one day downtime.

I took my time considering which option I should choose. Having my brain shot up with radiation or having someone go excavating inside my skull for a deeply buried tumor. Finally, I chose Gamma Knife, of course. Because no one ever says sign me up for brain surgery. No one. Plus, every neurosurgeon I consulted with said it was the best choice for me.

So, Gamma Knife it was. I had the procedure in June 2011. It was easy enough. I was told I should start to see improvements in six months. I felt hopeful about the future. I was feeling lucky.

Three months later the future was here

But I wasn’t “lucky.” Life and this brain tumor began to toy with me. By September 2011, I was flung into brain tumor hell every. single. waking. hour. There were so many new symptoms. I was exhausted from the relentless assault of my symptoms. I was terrified. These symptoms weren’t manageable to me. I didn’t want to die, but I just couldn’t imagine living like this.

Do you want to know what was happening? Well, let me give you the short story of the private hell that came to visit — and stayed:

  • Facial numbness was still with me, but now I also felt like I was dragging around the weight of a concrete block on the left side of my head.
  • And facial twitching and hemifacial spasms that made me look like the left side of my face had taken a serious dive south. Terrifying.
  • And the humiliation and grossness of drooling compliments of facial weakness. Yuck.
  • And the inconvenient vertigo and the feeling that I lived inside a spinning top.
  • And the unbearable hypersensitivity to loud noises and sounds in crowded places, honking horns, fire and police sirens, and morons playing their horrible music at MAX while driving.
  • And, oh my God, the fracking throbbing migraines from hell and the nausea sidekick that lasted for days at best and weeks at the worst.
  • And the total loss of hearing in my left ear, EXCEPT for the nonstop and vexing buzzing, beeping, roaring, or ringing that replaced my ability to hear. Sometimes, those noises were so loud I could barely hear myself think.
  • And then, there was the extraordinary physical exhaustion and mental fatigue.

Yes, this is what I endured every. single. waking. hour.

And if I wasn’t cursed enough, during this time, sleep was elusive for weeks. I felt desperate and hopeless. I felt like I was going insane. Frankly, I thought of death a lot. I didn’t want to die, but I didn’t think I could live under this onslaught for much longer.

No, there is no “happy” ending

I would love to tell you that my neurosurgeon team was able to help me. They tried. They prescribed Gabapentin and Lorazepam. I still don’t know if these pills actually helped with my symptoms. Mostly, I think they helped me sleep. And it was only during sleep that I finally enjoyed a reprieve from my chronic symptoms.

I would also love to tell you that I avoided brain surgery. I didn’t. In 2019, my brain tumor started doing some sh*tty shifting and began to press on my brain stem. The result was an inflamed brain and double vision. My choices: (1) five hour brain surgery or (2) eventual disability, suffocation and death. Yes, you read right. And this is a “benign” brain tumor.

So, in May 2019, I had the brain surgery I had tried so hard to avoid. On the day of the actual surgery, I was anxious but surprisingly at peace with my lot. Thankfully, I had an excellent and confident neurosurgeon. He was able to remove 95% of the tumor without incident. I did not suffer facial dysfunction. But the physical recovery was difficult and long. Nonetheless, according to my neurosurgeon, I am a “success” story. Yes, a “success” despite all of the chronic, irritating, and distracting symptoms I still live with.

Except…

I now have two new symptoms to cope with: the sensation of severe itching and the creepy, crawlies in my left eyeball and on the left side of my head. Many nights, I scratch and slap the left side of my head like a mad woman until it is irritated, hurts, and warm to the touch.

Oh, man. This “benign” tumor just keeps on taking and “giving.”

Takeaway

Yes, this “benign” tumor has left me deaf in my left ear and replaced my ability to hear in that ear with constant ringing, buzzing, or beeping. I will never again experience my beloved silence or a moment of real peace. The left side of my face is forever numb and sometimes itchy and “infested” with the creepy crawlies. Sometimes, I feel like I’m dragging around a block of concrete on the left side of my head. I am super sensitive to light and sound, which makes me vulnerable to debilitating migraines and tension headaches. I still can’t sleep without the help of Gabapentin and sometimes Lorazepam. I’ve lost count of how many brain MRIs I have survived and will have to undergo annually into the future; certainly, more than a claustrophobic with a hypersensitive brain should have to endure.

You Are Strong

But the miracle of my experience is this…

I persevere through this batsh*t for the last 3,753 days… 90,072 hours… 129,703,680 minutes… And I”m here still.

Yes, as I sit here 3,753 days later, it’s surreal to remember that at the start of my brain tumor journey I prayed for the strength to endure my symptom(s) for just six months — a mere 180 days — until my initial treatment of choice Gamma Knife “cured” me. Hm, silly me.

Honestly, I don’t know if I’m lucky or unlucky. These days and on a good day, I think it’s equally both. I can’t say I’m thankful for this damn brain tumor. Because I am not. But I can say this:

The sh*tty cards that life deals us reveal our strength, courage, and resilience.

My brain tumor “gifted” me one thing: the knowledge that I am resilient and strong — stronger than I thought I could ever be.

Listen, dear reader, I don’t know where you are today in life. Maybe you are already dealing with your own sh*tty cards. Maybe life hasn’t revealed your sh*itty hand yet. But I want you to know this:

When your time comes and your strength is tested by life, believe in your own resilience and strength. No, it’s not fair what life will ask of you. It’s not. But know that you are so much stronger than you think. You can persevere.

P.S. Don’t deny or pretend away the truth of your journey under a false blanket of positivity; be radically honest and share your experience of pain and suffering with others; and ask for and accept help.

Updated June 11, 2021.

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11 thoughts on “How a Brain Tumor Ruined My Life and “Gifted” Me a Valuable Lesson at the Same Time”

  1. I have been with you from the beginning. I have to say you are the strongest woman that I have the privilege of knowing. I have become stronger through your strength. My constant prayer is that God will continue to give you the courage to go on from day to day, because all things are possible through him. He can and will shrink that tumor. Amen.

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  2. Wow! Your story has me in tears. Reading about your incredible journey and strength helps me put in perspective whatever issues I am dealing with. I will definitely draw from your strength to deal with whatever the future holds for me. Thank you for sharing your story.

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  3. Janine. Thank you for so openly sharing your agonizing journey with your benign brain tumor. I would have thought that benign would have given a person more hope. WOW, was I wrong. I didn’t realize the extent of all the problems the darn thing has caused even after surgery. I’m so grateful that you are my friend. By looking at your lovely self no one would ever guess you’ve lived through this. You are a strong woman and have a knack of encouraging others. I love all your stories and subject matter that really make a person take note!!!

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  4. Thanks for the radical honesty in your experience with all this. I admire how you maintain your grace and beauty through it all. It is amazing that despite your own agonizing struggle, you continue to help others in your circle to the extent that you do. You are my hero!

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    • Lately, I’ve been thinking about where our strength to persevere comes from. Maybe staying outside of myself and showing up for others is part of it for me. Anyhoo, thanks for your love, support, and encouragement on my journey.

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