Amy tells us of how a brain tumour completely changed her life and of how having a tight support system during recovery is essential to learn to move forward.
A little bit about Amy
In December 2013, I came down with a really bad winter cold that lasted for weeks and ended with a dramatic loss of hearing in my right ear. The doctors suggested that I get an MRI to rule out a tumor, but I was a newly divorced single mother and just laughed that suggestion away. We settled with a diagnosis of sensory-neural hearing loss; the cold probably caused nerve cells to die in the cochlea from the inflammation. Which made perfect sense to me.
Fast forward to the winter of 2017, and I was working 50 hours a week trying to keep up with a very demanding job. When my child wasn’t home, I poured myself into my job and became increasingly exhausted. The headaches were continuous, I couldn’t walk straight, I fumbled and dropped everything I put in my hands, and swore that when I got some help at work I’d take a break. In February, my right cheek started feeling tingly, like the tingly feeling you get after getting a cavity and the numbing agent is wearing off – except it didn’t go away. Chiropractor adjustments and massages didn’t help, and my dentist finally convinced me to go to urgent care. So, in February 2018 I was diagnosed with Bell’s Palsy and went through normal treatment. At the end of March, my doctor ordered an MRI, and in May I found out that I had a golf-ball size mass on my brain. Possible diagnosis of Schwannoma or Meningioma. A week later the local neuro-surgery center still refused to schedule a consultation appointment because they were waiting on insurance pre-authorization, but the Mayo Clinic in Rochester, MN got me in the next day!
They informed me that if it grew any bigger, I would experience worsening coordination, paralysis, swelling on the brain which would lead to death. My golf ball was already displacing my brain stem quite a bit and was too large to consider any treatment besides surgery.
A turning point
Going to such a renowned facility gave me more hope than I could’ve known was possible. In July 2018, after saying goodbye to my family & friends, and my 8-year-old child, I had a craniotomy to remove the tumor. They diagnosed it as an Acoustic Neuroma and felt very confident that they had gotten all the tumor. Within 1 week, I was back at home and hugging my child!!
Even though I was home in a week, even though it wasn’t cancer (thank the good Lord!!), it was still a life-changing medical emergency that changed everything. When you have to say goodbye to your child, knowing that you may never see them again, knowing that they could grow up without you – you don’t bounce back from that. You don’t bounce back from going to surgery knowing you may not wake up. You don’t bounce back from the after-effects of brain surgery. Your mind is fuzzy. Bell’s Palsy set in after the medications wore off & learning how to laugh at the drool & food running down your chin from it is a skill. You get bored being at home but become exhausted way too quickly.
The ups and downs of recovery
I am luckier than most. The Bell’s Palsy went away (it’s about 96% gone); it’s been 5 years and my MRIs are still clean. However, the depression and anxiety that still plagues me today is brutal. The fear of my employer finding out and distrusting my abilities and my decisions is mind consuming. They don’t understand my headaches; my inability to remember things; my inability to wake up & get to work on time. The inability to keep up with others in activities is embarrassing (because they don’t understand). And when you fall down & scrape up both knees in front of a crowd, and someone yells “I want what she’s drinking!” – I have to chuckle because they have no idea how bad my balance is.
Learning to live with hope and fear
I wish there was a better way to prepare you for the journey ahead.
I did not know what to expect and was only told that “everyone is different”. I knew it would be hard, but there was no preparation for reality.
Learning to live with the fear and dread that it could come back, or that you could lose your job or lose custody of your child is real. Learning to live with the foggy mind and the exhaustion that suddenly knocks you down can be frustrating. Learning to live with suddenly feeling overwhelmed and to withdraw in a quiet place is not something I was used to. But it can be done, it will be done, because it must be done – and the strength is there.
The importance of a good support system
For the support team & caregivers, I say simply do it. Don’t ask what needs to be done, or if they want you to do it...just do it. Often it was the decision that I was unable to make. Help us find laughter & humor in what we are experiencing. Forgive us for our emotional outbursts or if we seem to be ignoring you.
I am luckier than most because of my support system. My parents and my brother have been by my side through everything, helping me clean my house & cook food and finding the humor in it all. My child is my daily blessing, seeing him grow up into a respectful, funny, smart, and humble young man means that I’m doing okay. My friends help me see past the struggle. I have continued to advance my career while also rearranging my priorities. I now have dreams & goals that I am actively pursuing and working towards – and have accomplished one of them! I have picked up painting and woodworking and hope that someday, I can read my books again.
Life does continue – just at a different pace & rhythm.