Amber Spicer was diagnosed with a Central Neurocytoma on October 23, 2016. She shares her experience and how after her ordeal, she decided to make every day count and put together a to-do list. Here is my interview with her and how inspiring she really is.
Hi Amber, how did you find out about your diagnosis?
While driving home from work one night, all of a sudden I had no idea how to get home. I called my boyfriend at the time, and when I read the street signs to him, he told me that I was only two blocks from the house and asked if I needed to go to the hospital since I was very confused. By the time I got to the hospital, I couldn’t walk, couldn’t raise my arms, and had forgotten my social security number and the year I was born. After a CT scan, a nurse came into the room and broke the news to me by saying, “You have a big problem.”
My entire life is so improved! Obviously, without the brain tumour and with those symptoms gone, I am able to enjoy life significantly more.
What were your symptoms?
Oh my gosh, I had a lot of symptoms. In retrospect, it was super obvious that I had a brain tumour, but at the moment it seemed dramatic to even think, not to mention a voice that concern. In addition to almost daily migraines with flashing aura and throwing up, I also had a dark spot in my vision, my arms would randomly go numb, I could continuously hear my pulse crunching in my right ear, and my field of vision appeared covered in spider webs every morning when I woke up.
How are you doing now?
My entire life is so improved! Obviously, without the brain tumour and with those symptoms gone, I am able to enjoy life significantly more. I am fortunate to not really have any lasting adverse effects from my surgery or treatment. I had a craniotomy on October 28, 2016, and Gamma Knife Radiosurgery on May 15, 2017, to treat a residual that was beginning to grow back. I drive 15 hours to Vidant Medical Center in Greenville, North Carolina, where I had my surgery and radiation, once a year now for follow up MRIs, as Central Neurocytomas have a 1/5 recurrence rate.
What do you do now in your life?
I work in disaster recovery as a Volunteer Operations Coordinator. We are specifically responding to the August 2016 Flood that destroyed 150,000 homes across South Louisiana. We are still desperate for volunteer groups.
More information can be found at pslfloodrecovery.com
What motivates you?
Receiving this second chance at life—and especially a life without migraines—motivates me on a daily basis. I try to spread love and positivity, and I try to be better than I was yesterday.
Who is your personal hero or are your heroes?
I have always been hugely inspired by my good friend Johnathan, who battled brain cancer when we were starting high school. Having heard his story, and observing his amazing bravery, I held on to that during my own diagnosis and surgery process. Before brain surgery, I had never stayed in the hospital overnight and never had an IV, not to mention any kind of operation. A lot of the strength I found came from reminding myself about Johnathan’s resilience at such a young age. He has been cancer free for over 10 years now and has a beautiful wife and family.
What would you say is the most exciting thing you’ve ever done?
After my surgery, I challenged myself to do 25 new things before turning 26. A good friend nicknamed the challenge “25 and Alive” since it was my first full year of life after having my tumour removed. This helped me to be mindful to take on new opportunities and to say yes more. It’s silly, but probably the scariest experience for me agreed to dance with a stranger in a bar in Italy. Absolutely no one else in the bar was dancing, and I don’t even dance with people I know even when other people are dancing, so it was way outside of my comfort zone!
What is the toughest challenge survivors face?
I think that sometimes it can be very lonely to be a brain tumour survivor. It’s not something that a lot of people have experience with, and so they don’t always feel comfortable discussing it. I personally had relationships end that I never would have anticipated, but also had people step up to be there for me when I wouldn’t have expected them to either. After joining support groups during my recovery, I was surprised to learn how common it is for survivors to have close relationships end, whether that’s with a friend, a spouse, or even siblings or parents. I’d encourage anyone struggling with this to reach out to other survivors, and build networks. Since Central Neurocytomas represent less than 1% of brain tumours, I joined with another CNC survivor as she started a private Facebook group of fellow survivors she had found through social media. Please reach out to me if you are a CNC survivor, we would love to get to know you!
What is next on your agenda?
At this point in time, I’m really just focused on getting all I can get out of life. I love to travel and am looking forward to attending my grad school reunion in San Francisco early this year. My long term life goal is to become a Collections Manager for an art museum.
Any advice for people or loved ones that get daunting diagnoses?
You are SO much stronger than you think! I have had people close to me tell me that they were surprised by the way I faced my diagnosis, and honestly, I was surprised at myself too. I believe that everyone has that strength in them, but a lot of people are fortunate enough to never have to prove it to themselves. Just trust that things will work out, and from a place that you weren’t aware of, that strength to fight will make itself available to you.
Tell us something about yourself that people probably didn’t know… anything?
When they were removed, I kept the staples that were used on my head after my surgery. They're in a tiny jar, along with the tool used to remove them, on a shelf in my home.
You can follow Amber on Instagram and follow her travels with her here – @spicera
What an inspirational person Amber is. I am so glad she has been able to do things she never would have dreamed doing if it wasn’t for her wake up call from having a brain tumour.
Have you ever stepped out of your comfort zone when something so overwhelming has happened to you and you realised life is short and we must take our days as gifts?