“ Make sure you are seeing doctors you trust and feel that you can ask questions of, and don’t be afraid to ask for another doctor if you’re not getting a good fit. Take it a day at a time, it takes time for shock to wear off
Alix is a Canadian mAssKicker hailing from Saskatoon in the beautiful Canadian Prairies! In August 2012, life changed for Alix, a busy executive, when she was diagnosed with a brain tumour. In her words, “It would take me eight months to re-identify as a healthy woman living with cancer”. Her positive attitude, integrative approach and medical team have been an integral part of keeping her on track to where she is today. We are honored that Alix could share her experience and thoughts with us – thank you for taking the time to do so!
mK: How did you find out about your diagnosis?
AH: In August of 2012, I was 37 years old.The neurologist I’d been referred to called me at work to tell me my MRI showed a glioma brain tumour. He instructed me to go to Emergency at our university hospital. At that time, I was diagnosed with a Grade II mixed cell type tumour, and put on a watchful waiting program. In May of 2015, an MRI scan showed my tumour had grown in size, and after surgery, pathology showed it had progressed and differentiated to a Grade III oligodendroglioma.
mK: What were your symptoms?
AH: Over about a year, in 2011, I was experiencing what turned out to be small focal motor seizures, which brought me to my family doctor. I was also experiencing headaches with any kind of exertion, as well as what I later learned were symptoms of fluid and swelling – plugged ears, and noises in my ears when I moved rapidly or bent over.
mK: Are you involved with any organizations? If you are, what do you do?
If you aren’t at this stage, are there any that you would like to get involved with and why?
AH: I keep up with research and brain tumour advocacy groups on social media, but am actively in treatment at this time, so I’m limited to “sofa advocacy”!
mK: What motivates you?
AH: My family, friends and loved ones. My personal drive to do well at whatever I undertake, even if it’s going through cancer.
mK: Who is your personal hero or are your heroes?
AH: My family. Watching my husband and my mother go through this with me makes me know that I live among everyday heroes.
mK: What makes you laugh, cry, angry?
AH: Cancer. I joked and laughed my way through surgery, radiation, and chemo, because that’s how I cope best. I don’t cry much, I work on acceptance; when I cry it’s mainly because seeing what this does to everyone around me is hard sometimes. I discovered dexamethasone makes me angry.
mK: What would you say is the most interesting thing you’ve ever done?
AH: In September 2015, I had an awake craniotomy to resect as much of my tumour as possible. I have a background in biology and have worked for years in research, and this was truly the most interesting experience I’ve ever had.
mK: What is the toughest challenge a survivor faces?
AH: Dealing with the changes in your body, and the sense that your body or your health has somehow betrayed you. And dealing with the perception from other people that you are now defined by your illness. And living with the reality of possible recurrence.
mK: What is your guilty pleasure?
AH: I like to sing like I’m auditioning for a TV show when I’m home alone.
mK: If you could live the life of any person (alive or dead – yourself excluded) who would it be + why?
AH: Katherine Hepburn. I always wanted to be an actress and I love her style and grace and nonconformity.
mK: What is next on your agenda?
AH: I am two cycles away from completing my six month course of chemo. My recent MRI in February was completely clear, so finishing chemo and getting back to work will be my next milestone.
mK: Any advice for people or loved ones that get daunting diagnoses?
AH: Make sure you are seeing doctors you trust and feel that you can ask questions of, and don’t be afraid to ask for another doctor if you’re not getting a good fit. Take it a day at a time, it takes time for shock to wear off. I worked on accepting that no one has any guarantees in life, so I’d not lost anything. Meditation and mindfulness practices helped me.
mK: Tell us something about yourself that people probably didn’t know… anything.
AH: I used to love Burger King poutine. I gave up sugar and carbs when I was diagnosed, so it’s not on my menu any longer!
mK: What is your favorite song and why?
AH: Right now my ringtone is What’s Up by 4 Non Blondes. I like it because it’s a little sweet, a little rough and edgy, and sums up what I feel like a lot of days.
mK: Any parting words for all the mAss Kickers?
AH: Thanks for reading, sharing, and keep kicking! Please feel free to contact me or read more about my experiences at my blog: www.greymadder.net.
Alix Hayden, awake craniotomy survivor, after-hours ‘at home’ singer, yoga instructor, health advocate, Operations guru and a woman who is passionate about her family and friends. Thank you so much for your time, energy and words of wisdom!