Sadly, Alyson passed away peacefully at the Rosedale Hospice in Calgary surrounded by loved ones on May 27, 2012 at the age of 35 after a courageous and dignified battle with brain cancer. We will remember Alyson for her strength, driven personality, radiant smile, and dedication to help those fighting cancer. She brought music into our Retreat Yourself 2010 and we all feel so grateful and lucky to have known her. Thanks for passing into our lives.
Hometown: Born in Kitchener Ontario but now I call Calgary Home
What school did/do you attend? University of Waterloo
Do you work?
I returned to work in April 2011, two years to the day after I was admitted to hospital. I currently work for the University of Calgary in a manager role in Enrolment Services.
What is your career goal(s)? To be able to return to my former position as a Director at the University of Calgary
How did you find out you were sick? What event(s) led to the diagnosis?
In Fall of 2008 I fell into a very apathetic depression. Wasn’t interested in doing anything other than watching TV. However I thought it was something to do with my motivation, so I started seeing a counselor and a personal trainer to re-energize. In February 2009, I started getting mild headaches which was odd for me, as I never get headaches. In fact a colleague actually told me that I should monitor them because she thought it was so strange that I was complaining of headache. But I wasn’t eating well and stress at work was high, so I figured it was lifestyle rather than something more serious. Additionally I started having some dizziness that was most prevalent when I was skiing. One day when skiing I came off the chair lift and complained to my boyfriend that I had vertigo. Visibility was poor and we were about to attempt a steep hill and he knew I was nervous. We both assumed that my “vertigo” was more in mind trying to make an excuse on why I shouldn’t try the steep terrain rather than a true dizzy spell. He encouraged me to focus on my turns and away we went.
In March 2009, the headaches got progressively worse. I would wake up with my hands on my head in the morning the pain was so bad. They would cause me to be late for work if I could even get in at all. When I did get in, it was really challenging for me to focus on things that previously really interested me and I started to isolate in my office. My depression had worsened and between that and my headaches I spent most of my free time on the couch. In April I begrudgingly went to my family doctor (GP) to discuss my depression and headaches. I still assumed it was my poor lifestyle but I thought maybe he could help. He sent me for blood work which came back showing nothing out the ordinary. He didn’t want to put me on medication but rather suggested I make positive changes to my lifestyle and if the headaches and depression didn’t improve to come back.
I spent the next four days in bed with a headache and missed two more days of work. On the second day I missed, my boyfriend told me to get a second opinion. So I took myself to a walk in clinic where the doctor did a field test and gave me the same advice that my GP had given me four days previous. However, she did refer me for an outpatient CT just in case. The three days I went to work, however, on Thursday April 22, after spending 45 minutes in a bathroom stall trying to relieve a headache I conceded I was too sick to be at work and went home. Friday, April 23, I woke up to the worst pain of my life. I was supposed to fly out that evening to Kelowna to attend a meditation/retreat weekend I thought would relieve my headaches and depression. That morning I went for a massage and then went for an expensive haircut. I came home and crashed into bed. An hour later I started vomiting. My boyfriend, thank goodness, was off work that day and immediately said, “That’s it we are going to the hospital.”
He took me to Emergency where within two hours I had a CAT scan. An hour later the doctor returned to tell me that I had an approximately seven centimetre growth in my right frontal lobe. I was admitted to hospital that evening. The next morning I had an MRI and that afternoon I was told I would need brain surgery. I had my brain surgery on Friday, May 1, and on Thursday, May 7, I was told that I have brain cancer.
What year was it? What was your age at the time? I was diagnosed on May 7, 2009, and I was 32.
At what level of education were you at diagnosis? I had completed a Bachelors of Arts from the University of Waterloo
What was your diagnosis? Grade IV Glioblastoma — Brain cancer
What were your first thoughts when diagnosed?
I was fairly unaffected, I think largely because I went into shock and I didn’t really comprehend the severity of diagnosis. Although the oncologist used words like “incurable,” in my mind the words “incurable cancer” did not exist. Although rationally I knew that cancer has not been cured, I never thought I could have such a serious diagnosis. For some reason I felt like I couldn’t be that “special.” I am grateful that I am a naturally optimistic person which continues to help me through this difficult diagnosis. Although I know there is no cure for what I have, I am optimistic that if I can stick around long enough new treatments will be discovered. The thought that I can beat cancer was (and continues to be) always at the top of my mind in the early weeks of diagnosis.
How did your family react?
They were devastated. My mom is also a cancer survivor, 15 years, and my grandfather (my mom’s father) died of a Grade III Brain Tumour in 1999, so to go through this again, it is extremely challenging on my family. However after the initial reaction, they saw how optimistic I am and they have also tried to change their mindset and support me in the way I wished to be supported, which is to not ignore the disease, but not let it be the focus of our lives.
How did your friends react? Were you treated any different?
I am so blessed to have a number of close friends who support me. I was overwhelmed by the number of cards, flowers, gifts, and emails that I received from friends, many of whom I have not spoken with in years. Especially for my closest groups of girlfriends, my diagnosis brought us closer together. They immediately rallied around me in to support me, and unequivocally the response was always “I am so sorry, but if anyone can beat this, You Can!” That inspiration just helps me stay positive. The only way I was treated differently, was that friends that I hadn’t spoke to in years took the time to reconnect, or moreover attend a party in May 2009 in Ontario to show their support of me in my cancer journey.
What did your treatment consist of?
Treatment is intense and includes three phases
Phase 1: Surgery to remove as much of the tumour as possible.
Phase 2: Concurrent Radiation and low dose chemo therapy. I completed 30 days of radiation, five days a week for six weeks and 42 consecutive days of chemo
Phase 3: 12 months of higher dose oral chemo therapy, five nights a month which I started in August 2009 and am proud to say I completed all 12 rounds in late June 2010. I worked throughout my 15 months to adapt an “anti-cancer” lifestyle including change in diet, daily exercise, reducing stress through Yoga and Meditation, and working closely with a Naturopath to keep my immune system up during treatment. As a result my blood work remained in “normal” ranges throughout the entire year of chemo.
I am grateful that side effects for all the treatment were “minor” at least compared to what I know other cancer survivors go through. I did lose some hair during radiation, but it has grown back and the radiation only enhance my natural curl. Being that my type of cancer is incurable, while treatment was “successful” I am still closely monitored with MRI every 2 – 3 months watching for recurrence. I still struggle off and on with cancer related fatigue but am a very active person on most days.
In which Hospital(s) are you treated? I am being treated by the incredible team at Tom Baker Cancer Centre in Calgary, Alberta.
What is your current medical status? I have cancer and am currently in treatment. All MRIs since diagnosis have shown no new growth since May 2009.
How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?
I have become a better version of myself since diagnosis. I am lucky to have strong benefits and low living expenses, which have allowed me to take time off work as I go through treatment. I have used that time to fully commit to my health. I have changed my diet and make exercise a high priority everyday which has not only helped me maintained a strong quality of health during treatment, but I have also lost 20 lbs and friends and colleagues tell me I have never looked better. I have fallen in love with yoga and also am learning to practice meditation which has helped improved my sleep and has improved the way I handle stress. I have found a new hobby in writing and started a website to share my journey and also explore this new creative outlet. I appreciate more completely how important I am in peoples’ lives and have worked to strengthen important relationships by spending quality time with them often. Finally I feel I am learning to be in the moment, being grateful for the gifts that I have been given, which allows me to truly live my most authentic life.
What is the toughest part of your challenge?
The finality of my diagnosis. There is a 99 per cent rate of recurrence even with successful treatment. However I have seen several examples of people with my condition going 10 or 15 years without a recurrence. You never know what could happen during that 10 to 15 years, what new treatments could come along to extend survivor rates or even cure brain cancer. However just like I don’t know when my recurrence will happen, I don’t know if a cure or new treatments will be found in time. Consequently when thinking about big plans, investing in a masters to advance my career, saving for retirement, having a family, I am caught in this paradox of not wanting to put my life on hold while I wait for cure with using resources like time and money to travel or have experiences in the time I have rather than investing them in long term dreams that I might not live long enough to realize.
What is the best part about having your challenge?
The opportunity I have been given to invest in myself, my health, my relationships, my values. To have time to spend time with myself and understand what the legacy is that I want to leave with my life.
What really motivates you to keep going while you are sick?
The people who love and care about me: my family, my friends, the messages from strangers and former colleagues. I know that I mean a lot to a lot of people and that my strength in this journey can inspire strength in others — this is what keeps me going.
What lessons or messages have you taken away from your experience? Too many to list, it’s what I write about each month on my website. But I think the largest theme is that you gotta take care of yourself, treat yourself with patience and kindness and appreciate the huge gifts you can offer to the world, then give these gifts away with all your heart.
What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis? It is what it is. I think I have become more aware of the severity and unfortunately the finality of my diagnosis. However I work hard to stay focused on the positive things that this journey will offer me and work hard to “walk the walk” in terms being authentic and genuine in my actions and choices.
What are some (if there are any you know of) preventative measures that people can take to lower their risk of having an experience like yours?
One of the best books I have read on Cancer is Anti-Cancer, which on the cover has the quote “All of us have cancer cells in our bodies but not all of us will develop cancer.” After the research and reading I have done, I believe this statement fully. I believe that genetically we are all prone to cancer. With my cancer, I know I was born with a genetic predisposition to get this disease. However I feel that my lifestyle prior to cancer, foods I ate, inconsistent exercise, and most importantly the amount of stress I allowed in my life, accelerated the disease for me. The research is pretty sound that with positive and consistent changes to your diet, making daily exercise a priority, practicing stress reduction techniques like meditation and yoga as well as eating and using organic and chemical free products can help people keep their cancer cells in check. I would recommend that if you don’t want to get cancer, adopt an anti-cancer lifestyle before a diagnosis.
Did you attend any support groups during your challenge? No
If you did not attend a support group, why?
People who typically have my diagnosis are 55 to 75-year-old men. Additionally the way I have responded to treatment, so positively, I didn’t feel that I would gain much from attending a support group where I couldn’t relate to the other participants who are so much older and who may be in a tough position with their journey. I guess because things right now are so going very well all things considered, I didn’t see what I would gain from facing my greatest fears head on, at least not right now.
How are you connected with Young Adult Cancer Canada?
I am attending my first retreat at the end of May 2010 and I have no doubt that I will quickly become involved with this as my main support group. I think that I will gain more from meeting people my own age who are going through a cancer journey, even if they have a different type of cancer, than from a support group of brain cancer only that are at a different stage of life.