Introduction: Valuable Blogs
This book is a collection of blogs from my first year with cancer. Although I have written for years before alysonwoloshyn.com I have never shared much publicly. The journey I have taken to develop as a writer this year, I feel, has been as significant as the incurable diagnosis which is, unfortunately, the muse for this collection of work. I am a true discovery writer, which is a style of writing where you don’t work from a full outline, but rather you intuitively write and see where your words take the story. While I typically have an idea when I sit down at my keyboard, my process is based on spontaneity, letting whatever comes into my brain, flow to my heart and then release through my fingers into words on the page. At times it is frustrating and challenging, as my fingers hold still waiting for my heart to release the words from my brain. Sitting stumped at my keyboard, sometimes for hours, sometimes stalled on sections for days, my core often starts churning in knots as I struggle to find the right words to express my state of mind and complete another blog to share.
Until I began putting this collection together, I chalked up the inevitable writer’s block I seem to face each time I start a new piece, to my inexperience as a writer. Yes, I have much to learn about structure, grammar, spelling, tense, and style (as you will likely note as you read this self-edited and self-published book), reading my blogs as a compilation, I realized the reason I instinctively choose a discovery writing style to share my stories of life with cancer is that intuitively I knew it was the best way I could discover myself. When I work through the process of moving ideas from my head through my hands, my center takes whatever time is needed to adequately mold the raw belief until it fits perfectly into my heart. Just like the waves, do not create the ocean, so too our thoughts do not always articulate what we really believe. The agitating pause I experience in creating many of my blogs is simply my core trying to test whether the beliefs coming from my brain are truly the values I can hold genuinely in my heart. As it is only when I can find the right state of belief, that my fingers can express my true state of mind.
I chose the title “Blogs for the Brain” to recognize the important role blogging has played in my ability to become a more genuine person which allows me to approach my journey with incurable cancer optimistically. To respect the process, I have tried to make limited edits to each blog, keeping it as close to the original as possible, and have presented my work in chronological order starting with my earliest chosen entry. In editing the book this way, I clearly saw that what started as a way to update concerned loved ones on my progress, quickly turned into a journey of self-discovery for me, specifically exploring what I most value and I have selected the specific blogs I feel best articulate my beliefs concerning the values I find most important. As I read back over the entries, I (and hope you) will see evolution not only in my writing style but more importantly in my clarity of thought and subsequently my clarity of self. This year-long blogging experience has definitely enabled me to better align the beliefs in my brain more closely with the space in my heart and with each new post I share, I feel less agitated as I write and more at peace with myself. I hope you will continue to join me on the journey and I look forward to sharing many more future discoveries with you.
Thank You Speech Homecoming Party - May 23, 2009
On May 23rd, 2009, Alyson’s friends and family came together at her parents' house in Kitchener to wish her well as she entered her year of treatment. 175 family and friends attend, some of whom Alyson had not seen in years. It was a truly inspiring day, which Alyson often goes back to as a source of strength on days when the heaviness of her cancer is too much.
Thank you all for coming – This has been an incredible day. First and foremost I would like to thank all of you for your help today and for everything you have done this week and today – Bringing food, gardening, moving birds' nests, taking photos, setting up, bringing gifts donating, showing up, and on and on. Thank you for helping make this day so special and for a perfect party. I really needed it. This is a significant moment for me. I don’t want to get too “Leadership” but if you would please indulge me with the opportunity to thank you formally, I would be grateful. I am going to read this against my facilitation and presentation training to help me get through it. Here we go
I am overwhelmed. I am a quotes person – anyone here who has worked with me knows, that every presentation, every report, and a quote comes with it. I went original with this experience and the quote that I think best summarizes this is:
“We are the personification of the company we keep – And I am always in the best company”
I have told people that I knew that I was liked, I knew that people liked having me around, but I have underestimated how important I am in your lives. What is more interesting is that I have learned more about myself, and who I really am, from the stories that you have shared. I have spent a lot of time on email over the past week – my friend Amanda told me I needed an assistant to keep on top of it. One of the interesting things that have come up is the way emails start – They always had a different name in the salutation
Hey …. AW, Aly Wo, Ali, Woloshyn, Wolosh, Wooly, Pops, Suntan, Coach, Ali – Cat, Cat, A-Rod. And of course – Alyson.
Just like everything else that I do – I can’t have just one nickname. These names, the groups have given me it is how they know me. Each persona brings out different stories, different connections, different activities, and different people. Yet somehow, Alyson seemed to translate across the personas. Through the countless messages, I have read I have had the wonderful opportunity to understand how all of you, through the different personas you have given me, have come together in who I am as Alyson. Here is one example.
I got an email from a friend, Kelsey Orth. He is a part of a group of friends who refers to me as Suntan. You can find members of that group here today and ask them why they call me Sun Tan. This is a group of unlikely friends for me, as they were my dad’s students and my dad didn’t teach at my high school. I remember asking my dad once “Did you ever think I would hang out with your students.” I think he responded “I had hoped you wouldn’t but if you were going to befriend any of my students, I’m happy it’s these guys as they are great people” He still keeps in touch with them and many are here today to support me.
One of the things I am known for is my great musical taste and specifically that I have a wee bit of an obsession with a little band named Bon Jovi. Well, there was a time, on a little blue bus, when I was hanging out with my dad’s student, when I think the words “Kelsey - Enough with the Bon Jovi” came out of my mouth more than once. In emailing Kelsey I recalled this moment and said to him, “The people who know my Bon Jovi obsession best know me as Woloshyn - but they don't know that the Bon Jovi love was born in Suntan.”
I like that although I am part of all these important circles where what you call me may change, the full persona of Alyson is always ever-present. No matter what you call me, thank you for helping me become who I am, which, I feel, is a pretty special person in Alyson.
The elephant in the room can not go unnoticed. Although in many ways, I am the BEST I have ever been, I will quote my brother “This is serious” and it really is. I am comfortable enough with all of you to be honest and I know I don’t have to tell you that my situation is scary. There are a lot of unknowns, a lot of bleak statistics, and well – not a lot of reasons to throw a party.
But here we are. And this is where you have underestimated the impact you have had on me.
I am continually hearing – You are so brave, You have so much strength. But I know get that strength from all of you. A common theme in every message I receive, no matter the salutation is the immediate, unequivocal, and unanimous reaction of – Alyson, You Got This. My friend Lisa Wannamaker, who knows me as Woloshyn I think best articulated this reaction when she told me “This is what survivor stories look like”
My situation is serious and it would be easy to be in a very different, very lonely, very desperate place. Not at a party. And the fact that we are all here, celebrating, laughing is very powerful. That strength is not all About Alyson Woloshyn – No Way. That strength is all about all of YOU.
There is so much more I want to share, so many stories I want to tell. I have many strengths, but brevity isn’t one of them, and neither is my ability to let other people talk. One of my strengths though is I am a giver of gifts. And I have one for all of you and I hope on this occasion, a group gift is ok. Music as you know is important to me and I love to dance. Those that know me as Aly Wo know that I had to have a 2:15 pm dance break in order to get through the day, complete with flashing overhead fluorescent lights. And there is a Wooly Woloshyn Soundtrack, certain songs that are particularly dance-worthy. I have picked a sample and if you would indulge me in dance – or 4 – I would invite you to stick around, spread out on the grass and join in.
I have very strong FAITH. I am not religious but I am spiritual and my Faith is Karma – Good stuff out, Good stuff comes back. There is no question that my surgery was so pain-free and so easy because all of you believed that it would be. I am a survivor and I need all of you to continue to be stoic in the belief that Alyson will beat this. Never question, never wallow in the negative, and never dwell on the potential negativity of this “incurable” diagnosis. Keep it All About Woloshyn. Read my blog which will be coming, stay connected to my website, stay interested in my well-being, get active in your own health, come back to visit my parents, and enjoy each other. I will need all of that to help me move through my 15 months of treatment comfortably and hopefully, it will bring me the strength to return to “regular” life. It will bring me to the day when it’s NOT All About Woloshyn – For the first time in my life – I look forward to that day.
I look forward to chatting, writing, emailing, talking, skyping, visiting, thinking, and seeing you soon and often. I love you all. Thank you – Let’s Dance!
Filling the Uncomfortable Space - June 14, 2009
On April 24th, 2009 I was admitted to Emergency at Foothills Hospital in Calgary presenting severe headaches and vomiting. That evening doctors discovered a brain tumour which led to brain surgery on May 1st. One week later, my doctors told me that I have a malignant “incurable” brain tumour (Glioblastoma Multiform – GBM). On May 7th, 2009 and at the age of 32, I started my journey as a cancer survivor.
The idea to blog my journey was imagined on May 1st, only a couple of hours after the surgery to remove a close to 7 tumour was complete. Surgery had successfully removed the majority of this mass and the only feedback from the neurosurgeon was the following “results”:
“We removed quite a bit of stuff, and consequently you do have quite a bit of extra space in there (pointing to the front side of my right forehead, where the tumour was). Your brain will need time to heal, bounce back and fill the space. The brain does heal very quickly but you may feel a little swooshy in there while the space refills.”
My partner, Jared, told me that I needed to get a hobby to fill the swooshy space. My brother, Cam, told me to fill that space with a blog.
My Blog is Conceived
I had always wanted to start a blog but struggled to find something to say. But I have always written and even though I have never shared any publically, I do feel I write well. I keep several different journals that hold different ideas, different themes, and different points of view. I don’t write every day but I do write often. The writing typically recounts parts of my day and it helps me work through specific personal problems. There are few entries that I felt were significant enough to inspire others and consequently, the entries are private, for my eyes, thoughts, reflection, and action only.
Since my diagnosis, things are different. My journal entries are more significant. My friends and family are being inspired to do things because of my journey. In my journals, I often wrote about wanting to motivate people in this way. I started to see that I could take this personal tragedy of an incurable cancer diagnosis, and turn it into an opportunity to accomplish my goal of inspiring and motivating others to live their best lives.
With my brother's encouragement, I started writing down my cancer stories outside of my journal. The main goal was to chronicle my survivor story and watch how I changed as I worked through the process of coming to terms with my diagnosis. But rather than write the stories in a private way, I adopted a point of view that would allow me to share these stories should I feel comfortable. I found the writing process cathartic as it led me to reflect on my journey, examine the process of coming to terms with my diagnosis, to understand what I have learned, and it helped to provide clarity not only on what step to take next but also it provided clarity on what I really valued most.
It also allowed me to respond to moments, events, and feelings in a completely genuine way. Writing is an independent and solitary activity, at least for me. When I write, I am not concerned about holding back emotion to protect the person with whom I share my story. When I write, I write what I think and I don’t worry about whether it’s the right thing to share. When I write, I can just react and let my words release what I am feeling. I can be completely candid in my expression and as such I see more clearly what I need to take my next step. As a result of this private release of raw emotion, I have discovered that when I write, I am my most authentic. And I know only when I am my most authentic, I am my strongest.
But I still struggled with publishing these important stories. Although significant and authentic to me, how would they be important to others? What would I say? Why are these stories relevant? Why would people read? Why would people care? I found the answers to “Why Blog” in the mountains on the May Long Weekend. Here is the story.
On the May 2009 long weekend, Jared and I went camping. We typically meet our friends Amy and Trevor every May Long Weekend at their trailer in some beautiful oasis in southern Alberta. This year it was Waterton Park in the southwest corner of Alberta. I had never been to Waterton and I always have a great time at Amy and Trevor’s trailer, playing with dogs Molson and Bailey, meeting new people, hiking, and exploring the mountains. I had been excited about this trip for weeks, as it had been booked prior to learning that I had a brain tumour. As the weekend approached even though only a couple of weeks since surgery and diagnosis, I felt well, so Jared and I decided that a weekend away was just what we both needed.
On camping weekends, Amy and Trevor’s trailer is open to anyone who can come. Most of the people coming that May Long weekend was from Taber and part of Trevor’s family. Because we have camped with Amy and Trevor before, some of these people were familiar, if only through stories shared by Amy and Trevor, but many we met for the first time on May 16.
One challenge I experience since diagnosis is seeing or meeting people for “the first time.” There is always the elephant in the room of “What do you know about my story?” My story is long and even the public information can seem “private” depending on whom you know and where you look on Facebook. So when I arrived for camping I didn’t know what people knew about my diagnosis, or even if they knew I had been in the hospital. Quite frankly, I hoped that they didn’t know much as I was craving a change of subject. At a minimum, I hoped my cancer might go unnoticed.
A couple that we had met at previous trailer weekends, Chelsea and Rob, arrived at the trailer a few hours after we did. They are a really sweet couple, who although we don’t know well, we always enjoy spending time with them at Amy and Trevor’s. After lunch, as we were cleaning up Chelsea came up to me and said, genuinely
“Alyson I just wanted to let you know that I have heard what has happened to you. I am really sorry to hear about your news.”
She then struggled to find the right words to say next and all she could say was, “I don’t know what to else say”
She felt uncomfortable and for the first time, I also felt awkward about how to respond to her genuine concern and sadness for me. I responded in my natural way, which is with humour, and used my Hallmark Card analogy, saying:
“What can you say? This is why there are no greeting cards that say – ‘So I hear you have a Malignant Brain Tumour’ – What does Hallmark put in the inside of the card– it’s too complicated. Would never sell.” I forced a smile and we both nervously laughed.
Unfortunately, my attempt at tumour humour did not clear the uncomfortable space around us. But Trevor did. He said boldly “I am going to make wrapping paper that says Happy F@$%ing Whatever – for occasions like this.” We all laughed and joked about creating a Hallmark Type Store filled with inappropriate items that you could give people when they got news like mine.
Chelsea’s loss for the right words to say wasn’t new for me nor was it a unique reaction. Finding out that someone you know and care about has an incurable form of cancer, seriously, what can you say? What words would fill a space that huge with the support you wish to extend? Although I had been in that uncomfortable space several times over the past few days, I was surprised that it was with an acquaintance, Chelsea, where for the first time I felt I couldn’t resolve the awkwardness. I needed to understand the significance of this “irresolvable” instance as part of my process.
I reflected and I wrote about this moment to find a clear way to resolve it. I feel the moment was uncomfortable and irresolvable for me because there was too much to share with Chelsea: too many significant stories, too many relevant moments that would have put into context the journey I was on and helped to move us from a space of uneasiness to a space of strength. I realized that in fact, it wasn’t Chelsea who didn’t know what to say. It was actually me that couldn’t find the best way to articulate why everything was going to be alright. It was I who was at the loss for words because I had too much to share and no way to share it in a positive way that would have relieved the uncomfortable weight of my diagnosis at that particular moment.
This experience helped to reveal the purpose of my blog which is to fill the uncomfortable space cancer has created with strength and positivity.
Specifically, the purpose is to fill the uncomfortable space with the significant stories that
Illustrate my process of becoming a cancer survivor
Inspires strength to support my survivor (survival) story
Involves people actively in my journey and
Ignites others to take action, accountability, and invite me into their own journeys whatever journey that may be
And so it begins, my blog is launched with this first official post. A series of stories will soon follow where I will introduce you to my significant moments. You will meet my loved ones, you will see me at my best, and see some of my worst. I will be honest and authentic as it is all I can be when I write. I invite you to be the same. This space is ours. Although I may choose the discussion topics, I invite you to join the conversation and help fill this uncomfortable space with strength and hope by sharing your reactions, ideas, resources, talents, and time. This gift of support through active participation in my stories is the best gift I could ever hope to receive.
Align Yourself for Your Health Battles - July 23, 2009
One of the important changes that has happened through this process, is my renewed commitment to be accountable for my personal health. I think previous to my diagnosis I was a pretty healthy individual. I generally watched what I ate, I exercised, tried to manage stress. I feel compared to the "average" person I was doing all right. However, I knew there was much room for improvement.
There is little research that explains why Brain Cancers occur, so I know that there is little I could have done to prevent my cancer. However, I have no doubt that a big part of why my quality of life has been so good through this can be attributed to two things. First, I took care of myself before this happened, which prepared my body to recover quickly from surgery and treatment. Secondly, since my diagnosis I have taken a very active approach in my own health and key piece of that activity has been my nutrition.
A good friend of mine and my nutritionist Angela Koehler Wright gave me a book right after diagnosis called "Anti- Cancer" - On the cover the quote says "All of us have cancer cells in our body, but not all of us will develop cancer." The book focuses on this concept and I like the idea that we, as individual, have the ability to prevent cancer if we take accountability to make some different choices. I find that idea extremely empowering.
Cancer, in my opinion, is an epidemic. I find it frightening to see how many people are affected. My friend Alison Thomas sent me a cook book with Cancer Fighting Recipes, and on the front page it said there are 420 new cases of cancer diagnosed every day in Canada. My Naturopath (ND) said that he has read articles that predict girls born after 2000 will have a 1 in 2 chance of developing some form as a result of the toxins we are putting into our bodies. In all three of these resources (Anti Cancer, Cookbook and ND), the food that we choose to eat has been identified as a key factor in our inability to prevent and fight this disease.
Before this experience I had always struggled with making the right choices when it came to food. I absolutely used food as comfort and when I tried to make changes I went on a diet. I restricted my food choices with an end date in mind. Although I said I was making “lifestyle” changes, I always looked forward to dropping the weight and then going out for some ice cream or a piece of pizza. Jared (my partner) would tell me that I would never make lasting changes if I approached what I ate as a diet. He encouraged me to use moderation and make good choices day in, day out, meal by meal and focus on all the great things I can eat, not focus on the things I was cutting out. This is the mentality I have adopted, finally.
At the end of the day, our health, our bodies, it's really all we have got.
Moreover, you never know when disease will chose to come to you. Two weeks after I was diagnosed, my father got sick. What started out as flu like symptoms, turned into a serious infection that attacked his entire body including his heart. He almost died. Before heart surgery, the doctor told my mom and brother that typically they like to have patients like my dad on antibiotics for weeks before they do this type of surgery, but that there was no time and they had to operate to give him any chance.
This was not a fight my dad had planned to battle, however he was ready. My dad, at 63 was on no medication, he worked out 4 - 6 times a week, including cardio. My trainer in Calgary trained my dad once last year and still talks about how in his sixties my dad could take most of his clients cardiovascularly. My dad indulged from time to time but generally ate nutritiously. He volunteered, read, had a good social calendar, was active, and had a very positive and optimistic outlook on life.
My dad had surgery on Thursday, May 21 to treat a serious sepsis infection that attacked most of his body, particularly his heart. When I saw him the next day, he was on a 90% ventilator, recovering with a new heart valve. He was on several IVs to control his blood pressure and prevent infection. My brother and I met with the cardiac surgeon who said that my dad was doing better than expected and it was because his heart was robust and strong. By Monday, he was completely off the ventilator, and on Wednesday, they moved him off Critical Care. On July 1st, he came home with still some recovery to do, but considering on May 21st there was a chance that he might die, from a staph infection that he might have gotten from a scratch when he was gardening (we will never know how the infection started) his current state of health is definitely remarkable.
I am so proud of my dad for taking accountability for his own health. I am even more grateful that he cares about his family enough to take care of himself because had he not, well, he might not be here. I think both of our stories demonstrate that you don't get to choose when your health is going to test you. There is a certainty that we will all face a health battle at some point in time, the uncertainty is when and unfortunately you don't get to choose when your fight is going to start.
You CAN choose to start preparing TODAY. You CAN choose to be ready when your time comes.
I am not an expert on nutrition or health. However, I am learning every day and I do feel I am setting a good example of what good choices can look like. Am I indulging? Of course. Am I indulging often? No, and it is about moderation.
For me, it is truly about choices, at every meal, with every craving: a choice to prepare my body to fight this cancer, and fight whatever other disease wants to take a crack at me. With each positive choice, I feel stronger, and more in control of my own health, which is an uncontrollable situation such as brain cancer, is very empowering.
People have asked me, what I am doing, and how have I changed my nutrition. Here are some of the specific choices I have made to take control of my own health.
1. Pop - "mostly" GONE - I used to drink pop every day at work. I knew sugary drinks made you eat more and the non-foods in pop such as sugar and aspartame can cause disease but I chose to ignore the facts. I have now cut out all diet pop and the only pop I do drink is the odd ginger ale, mostly an Organic Ginger Beer as a treat I often mix with some juice and lime. My choice of beverage now is water with lemon, green tea, and a glass of red wine.
2. White Sugar and White Flour - OUT - I didn't eat a lot of this before, but I am trying to get it all gone now. We don't have any white flour or white sugar at our place. We’ve replaced them with more natural options like agave nectar and different type of grain flours such as spelt, coconut, and whole wheat. Anti Cancer (the book) does a great job of explaining how these items, especially sugar, are basically foods for cancer. Check your labels and try to reduce these items in your diet.
3. Raw, Raw, Raw - Veggies, fruits, nuts, and seeds are huge staples for me now. Salad/Fruit is almost at every meal, including breakfast, where if I am having eggs, they always get a big bunch of sautéed veggies. For most meals, 80% of my plate is covered with leafy greens, and beautiful vegetables that keep me satisfied more than cheese, rice, or pasta ever could.
4. Organic Meats and Dairy - Where our food comes from plays such a huge role in what is in our meat. You wouldn't eat rotting spinach, but we think nothing about putting meat into our bodies that are full of steroids and toxins. These toxins are only going to help diseases like cancer spread and grow. I know that organic meat, eggs, butter, milk, etc are expensive, but you can start with small changes. Maybe cut back in other areas like Starbucks, junk food, eating out, or cut back on your meat intake as we tend to eat more animal proteins than we need. Fill your plate with mostly fruits, veggies, and whole grains, and just a small amount of organic meat rather than filling your plate with toxic meat which will make you sick.
5. Healthy Fats - Do not shy away from fats. A lot of the "fat-free" items are packed with sugar, aspartame, and other artificial products to ensure you still have the flavour of full fat. Your body needs healthy fats like good quality oils, avocados, nuts, seeds, flax, etc. Read your labels and consider going back to full-fat items like yogurt, and milk and then change your portions to a regular portion. Think about supplementation with a good essential oil like fish, flax, hemp or other essential oil blends.
6. GET HELP - Find a nutritionist, naturopath, or someone who is licensed, with proper education and training, to help you build a nutrition and health plan that meets your specific health goals and current ailments. Your health is personal to you, so although you can take advice from others, there is no magic “one size fits all” plan that will work the same for everyone. I am not an expert on nutrition and the above recommendations are "advice" based on the support I have received and things I have read or researched. It's working for me, so I thought I would share. I rely heavily on my Naturopaths and Nutritionists for coaching whose services are often covered under many employers' complementary health plans.
You really need to care about yourself enough, to take care of yourself. We all use food as a reward and comfort. We all have budgets we have to manage, busy schedules that don’t seem to have enough time to cook, and making nutritious choices can sometimes seem out of reach. If you are finding it hard to find the motivation, I challenge you to think about the people in your life who care about you, your parents, friends, children, and family, and think about how important you are in their lives. To think about what will happen when your fight comes, and you aren't ready, and you lose. In the case of my dad, I cannot imagine saying goodbye to him – not now, it’s way too soon. I am so grateful that he cared about me, and everyone else important to him enough, to care about himself and do the things he did proactively to win his battle. It’s why I still get to talk to him every day.
It’s thinking about a moment when the people I love, would have to say goodbye to me because I lost my battle with cancer which makes it easy for me to care about myself enough to make the right choices day in and day out. If you are struggling for motivation, picture a moment when the most important people in your life, had to say goodbye to you. Now picture what you could do today, to avoid that moment and you will find the motivation you need to make that right choice and ultimately be ready when your battle comes.
Finding Purpose in a New Routine - August 23, 2009
A few weeks ago, I met with my psychiatrist and he alluded to the challenges I may have once radiation was over. Specifically that many people that go through my treatment find once radiation is over the day-to-day becomes a little more depressing since there is no formal structure. On July 5th I posted an article from the New York Times called “Losing a Comfortable Ritual: Treatment” where the author, Dana Jennings, speaks of her withdrawal from treatment. In both situations, I could relate to the challenges of which they spoke, the loss of structure, loss of connection with people, and a potential loss of purpose. All of these outcomes I could see occurring to people once their radiation routine was completed, however, I didn’t expect these outcomes to happen to me, in fact, I was really looking forward to my radiation ending as it meant my schedule would be completely my own to structure at my heart’s desire.
Today I wrote to a friend Dwayne Keir. I met Dwayne backpacking almost 5 years ago through mutual friends. After the trip, we became friends through the internet (Facebook) and haven’t spoken much since our post backpack beer in Canmore. Dwayne is also a cancer survivor and when he heard my news he reconnected to offer his support. In the email I sent him today I spoke about my transition from radiation
“Kinda weird trying to get into a new routine where really, you don’t have to accomplish anything today – to get motivated to put down the remote and accomplish stuff”
Later on, as I was doing the dishes from dinner, I came back to that statement and realized maybe I wasn’t making the post-radiation transition as smoothly as I thought I would and wondered if I am having problems with my new routine.
It’s challenging to articulate the uncomfortable feeling I have when I think about my current “day to day”. I have things I want to accomplish. Making the bed, making dinner for Jared, do grocery shopping seem to be the daily agenda items. Preparing and eating nutritious foods, exercising, and connecting with loved ones through Facebook/Twitter are also top priorities. Then there are always the random errands which take make up my to-do list, as well as the odd appointment or social date with a friend. Finally reading and writing are those tasks I always want to do but too often TV does get the better of me.
These tasks are important, absolutely, but it seems almost selfish that I get all this time to focus on myself. The majority of these tasks are really only benefitting me and I do often feel uncomfortable talking with pride about everything I “accomplished” with my friends who are working on the daily grind. There is definitely some guilt that I can do all these things for myself and not have to worry about making time for work, the way the rest of the world does.
A few weeks back I went to my office to do some more transitions with my team and to reconnect with friends at work. The question “Do you miss work?” came up a lot. It was a challenging question to answer and I typically responded with, “I miss the people, but I don’t miss the work” and I would explain that my lament for the office was difficult to specifically articulate. I think through writing this, what I have realized is that the guilt I am feeling is more related to missing a loss of purpose.
I have always had a very busy professional schedule. I have never worked a 35-hour workweek. I knew that I should cut back but if I am being honest, I have often believed people who didn’t put in a minimum 50 – 60 hour week, well, just weren’t committed enough to their jobs. Although I would complain to friends and family about how much time I was spending at the office, inside I felt proud I was working that hard and I could accomplish so much. Because I was important at work, I had a purpose and I was successful. I was always very proud of this success and would define my purpose through my professional accomplishments.
Yet I think back to the hundreds of messages I have received from friends, family, and strangers, providing their support and expressing the impact I have made on their lives. None of them talk about my professional accomplishments. Some talk about the impact I have made in their lives within the context of a professional role I had, but all the messages speak to the type of person I am rather than the tasks I accomplished during those extra 15- 25 hours a week I felt were so critical to defining my purpose. Maybe it never was the things I did during my daily grind routine that really mattered to people? So if it wasn’t those tasks, then what is my purpose in my day-to-day?
For Christmas 2002 my brother Cam gave my Mom, Dad and myself a very special present. He wrote poems for each of us, then typed them (on a typewriter) on linen. The typing alone must have taken him hours. All three of us have kept them. Mine always hung in my office on a bulletin board, now it’s on one at home. I remember reading it in 2002 and one verse, in particular, made me stop and think
... and so many people always ask of me – what you’re gonna do next. They are as impressed as I am.
But what about you, where are you gonna go tomorrow. Let me know, make it fun, and don’t kill all your time on the boss's phone servicing clients' desires. Pursue what is yours
I pulled it down and reread the verse today. I feel ashamed that 7 years ago I read that powerful verse and thought “He’s right, I need to pursue what’s mine” and today I feel purposeless without work to dictate my schedule. Why is it that I feel without a job description, the things I accomplish today for myself are not as, or more important, than the things I would have accomplished in the office?
I am currently reading the book “Daily Inspirations” by Robin Sharma which has a specific inspiration for each day. Each night I read today’s inspiration and then I journal my response. Last night there was an especially significant quote.
“Give the main aim of your life over to far more important pursuits such as the discovery of your highest potential, giving of yourself to others, and making a difference by living for something more important than yourself. Success is fine but the significance is the real name of the game.”
Success is fine, but the significance is the real name of the game.
Pretty profound statement and it helps me find purpose in my new routine.
My daily tasks are meant to find my highest potential, which includes all the tasks I am doing to help ensure I can beat my cancer and maintain such a high quality of life. Like eating well, exercising, meditation, naturopath appointments, and of course all the medical appointments and tasks. I have to focus consistently on completing these tasks to ensure I can reach my highest potential as a cancer survivor.
My daily tasks allow me to give myself to others which include all the time I spend responding to messages I receive from people as well as actively connecting with friends, family, and strangers who I can help. Whether it is some words of advice or offering an ear to listen, taking care of my relationships is important. It also means writing and sharing my experience, which I hope, inspires others to also work towards their highest potential.
My daily tasks are focused on making a difference by living for something more important than myself. More important than myself is finding a cure for cancer, that would impact over 28 million people. So I will fundraise and unequivocally support this cause. More important than myself is hope, specifically that tomorrow will be brighter. So I will offer advice from my journey and try to support any person to whom I can offer this hope. More important than myself is love. I look around my room and I see pictures, cards, gifts, and other items that remind me of the people who love me, and to whom I am significant. Appreciating that enormous gift of love is always present in all my daily tasks. That love is what gives me hope of a brighter tomorrow and makes me want to reach my highest potential in order to spend more time with these people who care so much about me.
Tonight as I write this I am having a paradigm shift. I am shifting from success to significance. Don’t get me wrong, I am looking forward to the day I am well enough to head back to work and continue to have professional success. I feel that within work I can still reach my highest potential, give myself to others, and focus on making a difference for something more important than myself – especially working in the public sector, these 3 key goals I can achieve within the daily grind. However, I will also take my brother's advice and make my professional life fun and pursue what is mine. I will for the first time really understand what matters most, and I look forward to going back to work when I can put this theory to practice.
This morning when I wrote that email to my friend Dwayne, I felt that my tasks for the day were mundane and unimportant. This evening I spoke to my brother and we chatted about the tasks I am doing every day he said “It is a full-time job, taking care of yourself.” And he is right. Within this new perspective, I can see that the tasks are not selfish but rather significant within my new day-to-day. My new routine is about doing significant things to bring out my highest potential and there is nothing selfish or mundane about that.
You Can Always Come Home - October 5, 2009
I have lived in Calgary for 6 years but only recently have I started calling Calgary home. A year ago while working on the Juno Awards, a volunteer asked me “So how long have you lived in Calgary?” I responded, “Oh, well I am new to Calgary, been here about 5 years” and she said “That really isn’t new anymore” and I realized that Calgary was now home.
I love when people ask me what brought me to Calgary. I smile coyly and say, Love. I explain how my partner is an optometrist and wanted to practice in Alberta. I don’t remember exactly what he said when he told me about his post-graduation Western plan but I do remember it wasn’t just about professional ambition that made Calgary attractive. Jared had always pictured his life to be active and include activities like skiing, biking, hiking, and camping. He had decided to choose a place to live where the life he wanted could be found on his doorstep. He chose Calgary.
This personal choice is probably the thing that made me first fall in love with Jared and I still speak about how I admire his clarity of what is really important in life. Up to that point in my life, I had let my work define where I would live and I had settled by default in the Kitchener Waterloo (KW) area. I was content. I had a great job at the University of Waterloo (UW), I had started coaching and I had a large network of friends and family close by. It was a good life. Yet even before I met Jared I knew at some point I needed to leave KW. I had grown up in KW. I completed my degree at UW and then started working at UW just before graduation. Although KW is a great area and personally and professionally things were very good I felt that I needed to experience life outside KW. I just needed the right reason to leave. What better reason than love.
My friends and family were nervous when I made the decision. This was my first serious relationship and Jared and I had been dating just over a year when I officially packed up my life and moved out West. I took a few steps backward professionally to make the move and I had no friends or family in Calgary. My friends and family in KW were nervous that I was giving up too much. That it would be too risky especially if it didn’t work out with Jared. I wasn’t nervous and would respond to their concerns with “I can always come home.” But their concern was still; would my life still be there for me to come home to?
When I moved to Calgary I didn’t want to lose touch with my KW life. I am so blessed to have a large network of close friends and a large family that I would see regularly in KW. I knew if I wanted to maintain those important relationships, I would have to invest more than just phone calls and email if I was going to bridge the gap between the Eastern and Mountain Time Zones.
I made a commitment to not miss any major event if possible. That first year I flew back 4 times for weddings and once to surprise my parents for their 30th anniversary. I remember on one trip I went to a wedding in the Toronto area on Saturday then flew to Montreal on Sunday morning to attend another wedding. Monday morning I caught a flight back to Calgary to be at work for Tuesday. On each trip home I would make an effort to see friends, have lunch or drinks with former colleagues, spend time with family and reconnect with the life I had when in KW. I invested a lot of time coordinating plans and would often pack three weekends' worth of visiting into two days. Although I couldn’t spend as much time visiting as I would like, I felt people always appreciated that at least I made the effort to see them. With each investment of time, I felt the distance between Calgary and KW somehow got smaller.
My work to keep my KW life alive wouldn’t end when I came back to Calgary. I would constantly look for creative ways to invest in my relationships. The first year I was in Calgary I sent digital scrapbooks back to my parents to highlight all the adventures I was having. I would send birthday and anniversary cards to friends and family to let them know that I was thinking about them. For weddings, showers, or holiday parties I would miss I always sent a gift. If I found out that a former friend or colleague had reached a milestone, like when a former professor became the Dean of AHS, I would send a note of congratulations and describe the impact they had on me. I was never expecting anything in return; I just genuinely wanted to keep in touch with my KW life. I remember my financial planner looking at some of my costs for gifts and travel; he told me I could be investing those resources into RRSPs that would give me greater returns later on. I explained to him I was investing the resources into relationships that are too valuable for me to lose. He countered by telling me that I just flat out couldn’t afford it. I stood firm and said, “I can’t afford not to.”
On September 26th, 2009, I hosted my first official fundraising event for the Alberta Cancer Foundation (ACF) and it was fitting that it happened at UW Homecoming. Initiated by a former student leader I advised, Brenda Slomka, my faculty Applied Health Sciences (AHS) dedicated their Homecoming Fun Run to me and allowed me to fundraise for ACF. Over 200 people participated in the race, a record for the annual event, and we raised over $6000 for Brain Cancer Research. All this was achieved with barely 2 hours of work on my part to promote and organize the event. It was a truly huge return for the very little investment that I felt I had put in.
Although these metrics are incredible what is more powerful are the people who participated, either through attendance at the event or through a donation. Professors, senior public school classmates, floor mates from the first year, high school student council members, colleagues I barely worked with, varsity athletes, res life staff, orientation leaders, and of course close friends and family. Many of these participants I hadn’t seen in over a decade and yet they came; and at the risk of sounding arrogant, they came for me. Even as I write this over a week after the event has ended, this demonstration of overwhelming support from my former life still brings tears of joy to my face.
I have 5 Basic Principles of Leadership I try to personify day in, and day out. I learned these principles from a mentor Catharine Scott at UW. One of the principles is “Build and Maintain Constructive Relationships.” At a party that was held for me in May my friend Nicole who I have known since Grade 1 said “Alyson is a master at making and keeping friends. She is great at making an effort to get to know everyone who crosses her path, then does a fantastic job at staying in touch.” It was one of the nicest compliments I have ever received and the first time I ever really acknowledged that I had this strength. It’s rare that I give myself credit for accomplishments but I think the huge success we had on September 26th, as well as the outpouring of support I have been so blessed to receive, is definitely a reflection of the effort I put into building and maintaining my relationships.
Maintaining relationships takes consistent effort. It doesn’t have to be hard but it does have to be genuine. When you build a relationship purely motivated by what the other person can do for you, you lose sight of what you can personally gain by doing for that other person. Stephen Covey describes this concept as the “Emotional Bank Account” using the analogy that a relationship is like a bank account. You can’t withdraw funds from a bank account until you make a deposit. Likewise, you can’t expect people to support you unless you support them first. Moreover, making emotional deposits can also act like a savings account giving you investments of support you can withdraw to use in a time when you may make a big mistake or draw on when something unexpected happens, like finding out you have incurable brain cancer.
Now by no means am I so arrogant to think the unbelievable support I receive can solely be credited to the trips home, cards, gifts, or other investments I make to maintain my relationships. I believe you are the personification of the company you keep and I have done a very good job of surrounding myself with the best company. However, I do believe all the actions I have taken to keep in touch with my KW life, especially since I have moved to Calgary, created a huge emotional savings account which allowed me to make an equally huge withdrawal on September 26th and will continue to provide the support I can withdraw when I need it.
My life is now in Calgary. The lifestyle Jared wanted when we moved here 6 years ago I am proud to say we are living. I can honestly say I love living in Calgary, even on this October 4th morning when I woke up to snow falling. We have a great network of friends here who have come together to help us through this very difficult period. I know that these Western friendships will only get stronger over this journey and I know there is no shortage of emotional savings in our Calgary network. I am very comfortable and happy to call Calgary home.
What I realized recently is that through maintaining such strong relationships I have been able to keep my home alive in KW. Moreover, I have realized that home does not have to be an exclusive term that a person uses to only refer to the location in which they choose to make a life. Home can really be anywhere you have invested in a relationship that is ready to support you. Rather home is where there are people who will stand up for you when you need them. I am proud of the life I have spent investing in the relationships which have resulted in homes all over the world I can always come home to.
My Most Important Journal - October 13, 2009
For Christmas 1997 I bought myself a journal. I love keeping journals and I often have 3 or 4 different journals, each for a specific, purpose simultaneously on the go. I start a lot of journals and it’s rare that I actually fill all the pages before a new adventure begins which motivates me to start fresh with new pages and a new journal purchase. My 1997 journal, however, is still going strong.
The journal I bought is “The Simple Abundance Journal of Gratitude” by Sarah Ban Breathnach. The specific purpose of the journal is to make time each day to document 5 things you are thankful for. The opening quote by John Milton reads “Good, the more communicated, the more abundant grows.” Each week there are inspirational quotes that accompany blank lines, 5 under each day, which provide an opportunity for “renewal, reflection, and reconnection” I felt a calmness when I read the author’s purpose for the journal and imagined myself feeling a sense of calm completing its’ pages. I purchased the journal and made a New Year’s Resolution to take 5 minutes before going to sleep each night to reflect and document the things I am most grateful for at that moment.
Like most New Year’s Resolutions I came out of the gate strong, however, never quite made the 21-day mark which experts claim is how long it takes for something to truly become a habit. I made it to about mid-month and then my entries were pretty spotty for 1998. However, the journal remained on my nightstand as a reminder of my resolution to recognize the many gifts I am given each day.
During the past 12 years, the journal has never strayed far from my nightstand. I have moved almost a dozen times and in each move, I have looked at the journal and thought “Is it time to move on? Am I really going to complete this journal? Does it really matter if I take time each day to silently recognize what I am thankful for?” In those moments I would open the pages, review a few of the entries and I would reconnect with all the things that made my life so incredible. Inspired, I would close the journal smiling. I would place the journal intentionally back on my nightstand as a reminder of all I have to be thankful for and would again resolve to a daily commitment to documenting the abundance I had been given.
Somewhere along the line, looks like, in 2003 or 2004, I realized I was never going to be someone who every day made the time to formally reflect on what I was grateful for in my journal. I didn’t give up entirely on it but recognized if I only made an entry once a week or once a month, it was better than nothing. Realizing I wouldn’t make daily entries I started including the year behind the date. If there were entries already on the pages I would review the entries and try to determine what year I might have made them. Some were easy, as my entry would document a specific person or event that I could easily pinpoint to a period of time. However, some entries were more ambiguous which made determining an exact timeline sometimes impossible.
I love when I come across an entry where I can’t pinpoint the year or moreover when I can’t even pinpoint the specific event that motivated my specific entries of gratitude. Take July 8th, the year still unknown, I was grateful for:
Pretzels.
Great action movies with Seth Green.
Cool Cars and Warm Evenings.
Gift certificates that were unexpected.
Jared’s discipline and will that I admire so much.
What happened on July 8th sometime between 1998 – 2003/04? Did I see the Italian Job? Did I have one of those soft cinnamon and sugar pretzels that you can get at the movie theatres? Did Jared not get a pretzel and that is why I admired him? Was it the night I randomly volunteered for the Classic Car Show in downtown Kitchener and almost got mugged trying to find the volunteer check-in? Maybe, but there is no way to be sure - It’s a mystery. What I love about this particular mystery though is how it reminded me of that crazy night at the Classic Car show and how randomly I volunteered for special events in KW. It reminds me I loved going to the movie theatre down by Sportsworld in Kitchener, simply to get a deep-fried, soft pretzel, covered in white sugar and cinnamon. (Looking back with my new knowledge of white flour and sugar, maybe not the best choice, but still fun to remember.) I am reminded that I love the movie the Italian Job and that maybe the unexpected gift certificate was used to purchase the copy we now have in our DVD collection. The timeline ceases to be important with these mystery entries but rather what is important is I develop a clearer understanding that even in the simplest of things, such as going to a movie; I have a lot to be grateful for.
Surprisingly it was the task of reviewing all the entries to try and determine timelines that really helped me understand some of the things I value most. For instance, on February 24th (again year between 1998 – 2003/04) I was grateful for:
My parents who support me.
The rationality of Amanda Rose (one of my best friends who I met in Grade 8).
My friends who love me.
Modern technology.
Meditation.
Although these are specific entries there are obvious themes present, specifically relationships (parents, Amanda, friends), The Moment (meditation), and Work (Modern Technology). I can tell you that these specific entries come up again, on different days, for different reasons, throughout my journal as do many other names and common events or activities. When entries are reviewed individually the themes are difficult to see. However when you flip through the pages and you review the entries all at once the common themes of gratitude are impossible to miss. These themes of gratitude highlight what brings you the most abundant happiness and success. More specifically it helps you clarify the things in your life that really matter the most or rather the themes clarify your values.
A common compliment I have received since my diagnosis is that I am a very optimistic person. It’s not a word I would have ever used to describe myself. I think people often use optimism as a synonym for hope consequently people who are optimistic have hope; hope for a better tomorrow, hope for a cure and hope that everything is going to be all right. Moreover, I think people often think of optimistic people as positive people. It is probably the hope or optimism for a better future, for a cure, that everything is going to be alright, that allows the person to find positivity in even the toughest of challenges. While I do believe I am an optimistic person it is not hoping for a better tomorrow, hope for a cure, or hope that everything is going to be alright that keeps me positive. Aside from hope for a cure, I don’t need to optimistically hope for anything because I know I have been given all the gifts I need for a better future. I know that everything is going to be alright because I have everything I need to ensure I can make it through whatever life throws at me. I write about these gifts all the time and when I feel like there is nothing to be thankful for I reach for my journal and am reminded of the continued abundance I have in my life. My positive or optimistic attitude comes from my ability to be sincerely grateful for all I have been given.
It took some time for me to continue writing in my journal during the months immediately following my diagnosis but I still practiced gratitude daily in different ways. I wrote a lot of thank you notes to loved ones who came to visit me in the hospital or who sent gifts. When I would explain my diagnosis I would focus on the things I was grateful for, like how close I live to the hospital, the strength of my medical team, or the fact that my chemo was oral and I could take it at home rather than focusing on grim statistics or potential hardships I might face. I would also pray. I am not a religious person but I have developed a stronger understanding of what it means to have “faith” through this journey. I remember a specific prayer that I said as I fell asleep on May 1st in the neuro ward after successful brain surgery. The surgery was extremely smooth, in fact, I was experiencing very little discomfort. I was alert and able to communicate almost immediately after the procedure and the neuro-surgeon said he had removed everything he wanted. I had no headaches and I felt safe and secure. I knew that there were still unknowns but I also knew I had made it through the difficult milestone of brain surgery very successfully. I knew I would make it to tomorrow. As I closed my eyes to sleep I became overwhelmed with emotion and for the first time in my life, I connected spiritually to a higher purpose. I reflected on the knowledge and skills of my medical team who did such an incredible procedure. I reflected on all the people that were praying for me, thinking of me, and protecting me during the surgery. I knew it was these gifts of knowledge, skills, love, prayers, and strength that carried me through that important milestone safely. I brought my palms together on my chest and I used two words to encompass all that I felt. I prayed aloud the words - “Thank You”
There is no question that although I have new challenges I have an abundant life and I have much to be grateful for. I have become more consistent in my journal writing and the 2009 entries will most likely outnumber all previous years combined. Many of the gratitude themes and values remain consistent however 2009 brings a new theme of gratitude that revolves around my medical gifts. The last three nights for example I have been grateful for, “my chemo, limited side effects, for no side effects chemo.” When I review these entries in years to come I will most likely remember that I was actively taking chemo over this Thanksgiving weekend and no doubt be grateful that treatments, like chemo, are a memory. I will be grateful for my health in that and all moments.
As I flip the pages to next week I see that 4 of the 7 days are already completed from 06 – 08. I haven’t read them yet but when I open them next week I will no doubt smile at the entries and remember an event or person or realize something new about what I really value. No question that with each entry I will gain more positivity from the abundance in my life; As the journal promised that
“Good, the more communicated, the more abundant grows.”
Update – Alyson finished the Simple Abundance Journal of Gratitude on August 4th, 2010, 12.5 years after she purchased it, and has now started a new journal where I continue to reflect on what I am grateful for but also review what I am proud of each day.
Nature of Fear - November 1, 2009
I have always found Halloween an intriguing time of year. We decorate our houses in images of death and terror vying for the most gruesome scene on the block. Creatures that are synonymous with fear such as spiders, snakes and bats are carefully hung in doorways to attack unsuspecting victims. It is the one day a year when it is not only appropriate but encouraged to imitate demonic characters and try to scare the pants off of little children looking to score candy from strangers. It’s the one day a year when you wake up and get excited to confront the things that scare you most.
As Ghosts and Goblins started appearing on neighbourhood lawns I started thinking about my own fears. I think generally I am a pretty timid person. You put me around a spider and I am going to jump. If you rent a scary movie, I will spend most of it covering my face with a pillow or behind my hands. The rational side of me says there is nothing to be afraid of; the spider is surely more scared of me and it’s only a movie; what are you getting all worked up about? To which the irrational side defensively responds – Sure it’s not so scary when you put it that way, but where were you when the spider bared its teeth?
But what about deeper fears, what are things that day in and day out scare me. It’s not often that I feel afraid and when I reflected further I realized that my fears tend to manifest themselves in anxiety about tasks I need to complete. I have always had challenges with anxiety however because I was (or am) such a workaholic I attributed the anxiety to stress from work. I have been off work for 6 months and the anxiety seems to be persisting. I know the anxiety can’t be blamed on work but I still can’t put a finger on why I continue to be anxious. At the advice of my psychologist, I started paying more attention to my inner monologue when I began feeling anxious. Specifically, he encouraged me to try and determine how this inner monologue made me feel about myself. He wanted me to listen to the things I told myself, to determine the key themes that may be affecting my anxiety. He asked me to not just accept the inner monologue but to talk back and challenge potential comments or thoughts that may be unfair. I thought it was an interesting proposal and left the appointment ready to get to know my inner Alyson.
Over the past few weeks, I have been listening to the inner monologue. If you think “outer Alyson” talks a lot, you don’t want to spend any time with inner Alyson. She is NON-STOP. Constantly making lists of things she wants to, things she should be doing, and things she needs to do, she even goes over and critiques things she has already done. At most times the monologue is motivating helping me stay on top of important to-dos as well as challenging me to finish tasks that will help me reach specific goals. Although sometimes I do feel anxiety during these motivating monologues, I can most often relieve this feeling by telling the monologue to quiet down. Because I know how to manage my anxiety with this “motivator” I don’t think it’s these motivating thoughts that are at the route of my anxiety.
I paid closer attention and discovered another voice I had never noticed before. This new monologue contradicts the motivating monologue I first heard. The newly discovered thoughts would describe all the barriers that stand in my way of completing a task and would actually talk me out of completing a goal that the day before my motivating monologue had gotten me so excited to finish. For example, there is a conference upcoming at the U of C that a colleague is running. I believe I would be a great keynote speaker for the conference and decided after the September rush I would follow up to make a proposal. End of September came and went and for the last month I have contemplated emailing her with some ideas and to have her consider me as a keynote. A month ago my motivating monologue had me rehearsing my opening remarks and thinking about content but when it came time to move forward this new monologue interrupted and changed the subject from why I would be a great keynote to why the colleague would never consider me. A cynical voice explained that they probably already had a speaker, and that I don’t have enough experience; it even challenged my work ethic indicating that I would probably leave it to the last minute and do a brutal job so I should spare myself the embarrassment by even suggesting I should be considered. All of the cynical comments sent a clear message that this idea of being a keynote was at best, a terrible idea. The motivating monologues would attempt to challenge back however the cynic just got louder with more reasons not to move forward and would ultimately squash any residual excitement I might have about speaking. In this moment of conflict between my inner motivator and my inner cynic, my anxiety would rise to its highest level and I realized this cynic might be at the route of the problem. I took my psychologists’ advice and listened to the inner cynic to determine why emailing a colleague was making me so anxious.
When I stepped back I realized I was creating barriers for myself to mask that I was actually afraid of two opposing negative outcomes. First I was afraid of potential rejection. The colleague was a person I really admired but I wasn’t sure what she thought about me. I feared she would find my request potentially laughable or that when she presented the idea to other colleagues they might think it was absurd that I thought I could take on such a prominent leadership role. Conversely, I was afraid she might think I would be a great speaker and I was actually worried I would get the gig but that I wouldn’t prepare well enough, would ultimately present poorly at the conference, and embarrass myself. I realized the cynic was making excuses to hide the real fears that were holding me back; which were that I was ultimately afraid I wasn’t good enough. Moreover, I was afraid if I emailed I would put out an opportunity to validate this fear. My anxiety peaked when I articulated this fear and I knew that I was on to something.
When I looked at other projects I had on the go it became evident that this underlying fear that “I wasn’t good enough” was holding me back from a lot of things. Even thinking about confronting this fear would bring up anxiety and discomfort and I would hear the cynic again making excuses to help relieve the knots in my stomach. However this time the motivator had new arguments. It started to challenge why I was afraid and moreover told me the fear was really all in my head. The motivator reminded me of the type of person the colleague was and that the only absurdity was I would think that any of my colleagues would laugh at my leadership skills. The motivator reminded me I would have months to prepare and that all the writing and presenting I am currently doing would only set this presentation up for success. Moreover, the motivator called me to task to be accountable for my own sense of self-worth, to stop looking for external validation, and quite frankly, to just get on with it. Just like my fear of spiders, this fear of inadequacy was not only irrational but just plain silly and it was time for me to squash it and move on. I found the courage to send off the email and of course, the response was nothing like I had feared and was everything I had hoped for.
Yet there are still some fears that silence both the motivator and the cynic. I have a lot of new thoughts that come up which revolve around my mortality and none of my voices know quite how to handle these yet. Most of the time I am confident my treatment will be successful and my prognosis will improve but there are moments when the severity of my diagnosis sets in. I will remember how my grandfather, who died of a Grade III Astrocytoma, so quickly deteriorated and how my mom and Aunt Carol had to take care of him during his final months. I remember the woman who was across from me after my surgery and how she could not communicate with her family or nurses what she needed when she needed it although I knew that she still had a good mental capacity to know what it was that she wanted. I remember what doctors and statistics have told me that a good survivor rate is 10 – 15 years – which would make me 47 at the tail end of the curve. With these thoughts there is no inner monologue; just a scary movie playing in my head where the heroine knows that the killer is coming for her, she just doesn’t know when or how. She races through the field in a desperate attempt to save herself, but she knows the inevitable is coming. Typically at this point in a movie, I would change the channel for a moment, let the inevitable happen, then come back for the next scene however with the movie inside my head I can’t seem to find the remote. I play over the images of what is coming and all I can do is hide my head in the pillow to try and avoid my fear of dying.
Recently this fear of death really gripped me and I started to get pessimistic about my future. I was focused on all the negative things I thought were going to happen to me and was stuck on all the things I thought this cancer was going to take away from me. With my head figuratively in my pillow, I would replay the images of all the things I thought I would never get to do and moreover all the things I might never get to share with loved ones. It was a horrible scene that would only get worse each time I watched it. I needed to change the channel and knew the only way to do that was to take my head out of the pillow and find something to help me confront my deepest fear. I remembered a part in the book ``Anti Cancer`` where the author addressed the fear of dying, so I went back to that resource and reread his thoughts. Specifically, he shared a quote from Dr. David Spiegel who conducts research on how support groups help those with serious illnesses. Dr. Spiegel recommends that “What’s most important is to always hope for the best but be prepared for the worst.” Dr. Schreiber(author of Anit-Cancer) elaborated, indicating that for the most part people aren’t afraid of dying but rather people are afraid of the things that came along with dying – pain, leaving loved ones unsupported, not saying things that need to be said, or not being able to communicate what you need or want. With this new perspective, I realized that my greatest fear wasn’t dying but that I was afraid of not being able to die with dignity. Rereading Dr. Spiegel’s quote my inner motivator spoke up and told me to drop the pillow and for the first time really articulate what this fear looked like. I began to journal honestly, with the opening line “I’m facing my mortality head on today and it’s terrifying. ..”
I took my time and I confidently wrote out all the things I needed to do to prepare for the worse. I confronted images of loved ones taking care of me and thought about what I wanted that care to look like. I allowed myself to be selfish in my requests and for the first time put my needs in front of others. I allowed the cynic and motivator to talk without judgment and I started thinking about what action I could take to face my greatest fear.
My journaling soon became a list of concrete things I needed to prepare. Articulating specific tasks helped me deconstruct my fear of death and refocus this energy on things I was confident I could control. On this to-do list, an interesting idea arose – I wrote “Create a list of the things that I want to accomplish” I then crossed out the word “accomplished” and wrote, “Create a list of the things that I want to DO.”
I had never thought about things I wanted to DO and that idea knocked the fear right out of me. It was exhilarating. I grabbed onto the excitement of this idea and grabbed yet another journal. The opening quote on the journal says “First it begins inside your heart. Something moves then opens, then frees itself. And now you feel a rhythm breaking its long silence. This is going to be good.”
On the first pages, I faced my fear that cancer was going to rob me of time and ultimately rob me of experiences I felt I deserved. However, I also articulated that just like my fear of scary movies or my fear of inadequacy, this fear of loss of time again is also irrational. Everyone knows that ultimately we are all going to die and no one is guaranteed time on this earth, cancer or no cancer. When I deconstructed my true fear I found the confidence to face it and not let it beat me. I had finished preparing for the worst and now was ready to hope for the best. I wrote
“I can be what I want – enjoy life and all the parts of it, happiness, love, friendship, pain, grief, loss, with an open heart and courage. Cancer may steal time from me but it can’t steal the time of my life. My time may be shortened – but my life just got extended. Here is what I have gotten to do...``
I made a vow to consider daily, the tasks or events I do that I never would have done if I hadn’t gotten cancer. Things like on September 16th I played cards with my parents and a lifelong friend of my dad, Brian Cowan, and got to hear stories about what they did when they were all my age. On Sept 13/Sept 20th I attended a Christening for my friend Amy and a Baby Shower for my friend Mel. On May 23rd I had a party in my honour where 174 people came to tell me they loved me. ‘April – Ongoing` I receive emails, messages, phone calls, and gifts from people who tell me that I have positively impacted their lives. I started the journal on September 13th and to date, I have over 30 entries. The goal is not to be grateful for this disease but rather to recognize that I can refocus the energy I spend being afraid of what cancer might take from me and turn it into a great opportunity, which is a legacy of memories that will survive me in my friends and family.
It’s human nature to have fears however exceptional people have the self-awareness to understand that most fears are irrational emotions that hold them back from achieving their wildest dreams. It really is true that “there is nothing to fear but fear itself” and that “you gain strength, courage, and confidence by every experience in which you really stop to look fear in the face” It is still a daily struggle to find the confidence to confront my fears. I know I will have good days and bad days. Some days the cynic will win holding me back from taking a chance but I know most days my motivator will find a way to squash the spiders that stand in my way. Some days I will need to hide in my pillow to protect myself from the scary parts of the movie but I now know how to change the channel and take even my darkest challenges and turn them into my brightest opportunities. And I am confident I will find the courage and strength to look my fears in the face and I know this is going to be good.
Update – Alyson made a personal choice to not submit a keynote proposal for the conference described in this post. However, continues to speak for Alberta Cancer Foundation and will be starting a Professional Speakers Program in January of 2009. Alyson still continues her special events journal and has over 9 pages of entries.
The Value of a Dollar - December 2, 2009
With holiday shopping in full swing, it seems the recession has become the new hot topic. It is that time of year when people start to open their wallets however in “these tough economic times” it does seem that people are trying to make the most out of every dollar and working hard to manage all their holiday shopping within, potentially, a new limited budget. I am pretty much done with my Christmas shopping (yep got it done in pretty much one day) but I still watch thrifty shoppers on the news describe how, because of the recession they are cutting back and trying to make every last dollar count. Typically these types of stories never really interested me as fortunately, even when the economy got rough, my personal finances always seemed to weather the storm. This year I find myself more interested in learning what people are doing to make their budgets go further and I find myself relating to having to make adjustments when an unexpected event, like a recession, makes it harder for you to make ends meet. However, unlike the shopper on TV, it is not the dollars in my wallet I am worrying about, but rather it’s my Brain Dollars that seem to be running short.
In late October 2009, I went to a Brain Tumour conference where I attended a session on fatigue. Fatigue is a pretty common topic for cancer-related seminars or conferences as 100% of people who go through cancer treatment will experience some form of cancer-related fatigue. “Cancer-related fatigue is a distressing, persistent, subjective sense of tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning.” At the time of the conference, I debated whether I needed to attend the fatigue session as I didn’t feel I was really experiencing any symptoms. However as predicted, over the past few weeks fatigue has started to rear its tired head and I am grateful I made the decision to attend the session rather than go for a coffee.
In the session, the speaker explained that most people with brain tumours have to intentionally manage their energy levels. She referred to energy levels as “energy banks” and moreover she measures her energy levels based on the number of “Brain Dollars” she has in her bank. She described that everyone (cancer/no cancer, brain tumour/no brain tumour) gets a set amount of brain dollars each day, and just like real dollars you can choose to save or spend your brain dollars on activities you wish or need to complete. Unfortunately, people with brain tumours, especially those on active treatment, have more expenses to cover than an average person, like recovering from surgery and radiation or supporting your body as it utilizes chemo, consequently we have fewer brain dollars than other people to spend on work, family, recreation or other activities. As a result, we (and our support network) can’t expect to manage the same level of activity we once did. She analogized that just like with your personal finances when you overspend you go into debt if you don’t manage your brain dollars effectively you may not be able to do the things you most want or even worse it may lead to exhaustion or impact the effectiveness of your treatment. One unique difference is that, unlike real dollars, brain dollars of people often lose their value at the end of the day making it difficult to save up for something you really want or save to use when an unexpected event occurs.
I have always been an energetic person and pre-cancer there is no doubt I had ample brain dollars in my energy bank. For as long as I can remember I could pack in 48 hours of activity into each 24-hour day. My good friend Paulie from university and one of my co-founders of the UW Superfan club described my energy in a recent message - “Aly, I just assumed there were hundreds of you running around to be able to take on and crush every challenge.” Now I think he over-exaggerated with the crushing statement but I do admit that I was (am) what you might call a “keener” and involved in everything under the sun. Although I never really appreciated that I was balancing more than the average person. My level of activity has always been high and I always had brain dollars to spare so my go, go, go routine just felt normal.
Fatigue is now part of my new normal and day by day I am trying to find new ways to minimize fatigue’s impact on my quality of life. My fatigue personifies itself in general feelings of tiredness, difficulty concentrating, increased anxiety, and disruptive sleep. Additionally, it takes a lot longer to recover after exercise and I am much more prone to injuries. For example, over a month ago I twisted my ankle playing volleyball. Despite consistent icing and pretty well the complete elimination of high impact exercise it is still swollen and tender which limits the activities I can participate in. Last night as I was putting on my coat I pulled my right shoulder and this morning I can’t lift my arm above my head without a little bit of pain. No doubt this injury resulted from an upper-body workout session with my trainer a few days ago. In the past I could rely on my huge energy banks to push me through however now that I live paycheque to paycheque, I have to be cautious I don’t overspend which means all too often I have to limit the activities I can take on. Although I can still go, it’s frustrating that I can’t go as far as I once was able.
What adds to my frustration is that since my cancer diagnosis I have finally found the motivation to make the most of every day. For years I would have the energy to spare but sometimes I would find it hard to get motivated to actually use that energy productively. But now, I finally understand the value of a brain dollar and am compelled to spend them on activities that will reap positive returns for my life and the lives of others. For the first time, I want to get out and run or start training for a race, not because I want to lose weight, but rather because I want to experience the thrill of competition as well as experience the discipline of investing in my health every day. However, I know my body can’t handle large training so instead, I have to go for a walk or choose a low-impact exercise to allow me the opportunity to recover. I have lots of time to volunteer or try out new projects like writing, coaching, or speaking but most days I can’t stay focused on the computer for more than a couple of hours to complete a task. Some days I wake up feeling great, I get excited and go, go, go on tons of projects just like my old self but the next day I inevitably wake up exhausted and realize that in my excitement I overdrew my account and now I have to save up for 3 days to get myself back in the black. Then at times, for no reason, something just robs my blinds and I am left broke even though I haven’t really done anything that day. I have no choice but to cancel activities last minute because I don’t have enough brain dollars to even get off the couch. Although I can tell myself it’s not my fault, I still feel guilty, lazy, and frustrated that I don’t have enough energy and often blame myself for not accomplishing more.
It’s rare that I pass judgment on people however because I was such a healthy person before my diagnosis, at times I find myself looking at someone, mostly strangers, and feeling resentment at the way they get to spend their energy and not have to worry about cancer. On days when I am feeling particularly fatigued, it’s extremely frustrating to listen to people complain about not having enough energy or even worse, to see someone who, I feel, is really misspending their brain dollars. Like people who complain about being overweight and they don’t have time to exercise or eat well and then they choose to blow their brain dollars on TV. Or someone who spends all their energy focused on all the things that are wrong with their life rather than investing those brain dollars into activities that would yield more positive returns for their happiness. In those moments I find myself wishing they could give me the brain dollars they are wasting so I could spend them on all the activities I desperately want but I can’t afford to do.
But that judgemental thought quickly fades and I think about myself. Was it not Matthew 7:1 that says “Judge Not Lest Ye Be Judged. For with what judgment ye judge, ye shall be judged and with what measure ye mete, it shall be measured to you again.”? If I am truly honest with myself I know that it’s not these frivolous brain-dollar spenders who cause my frustration but rather when I see or hear their comments I realize it wasn’t too long ago that I too was one of these reckless spenders. In that moment of judgment, I review my own spending habits when I was energy-rich and am disappointed at how much I took my energy bank for granted and how frivolously I squandered my brain dollars, investing them in activities that in the big picture didn’t give me any return for the investment.
There were times when I made good investments with my brain dollars and I believe these investments really helped to create my rich energy banks. I look back at my time in high school and university and can remember fondly what I did with my time. In high school you could find me, most of the time in the Student Activities Office working on a new event for the school. If I wasn’t there I was likely in the gym playing on a team and working to organize activities to help us be more successful both on and off the court. In university I didn’t just participate, I had to lead leadership programs and if there was an activity I wanted to do but there wasn’t a formal program, well I created a club or event to fill the void. These were smart investments into my development as a leader that I know have helped me find professional success despite my lack of formal experience or education.
When I wasn’t involved in leadership, most of my time was spent socializing. In high school, it was chatting between classes and lunch in the Art and Poster room or often playing Euchre in the caf. At University it was hanging out in the SLC playing spoons, getting in trouble for moving all the furniture, and involved in a scholarly discussion such as what food items would be better if carbonated. Most weekends my social calendar was full as I balanced events with numerous different groups of friends, sometimes going to 3 or 4 activities in one day. Although I probably should have invested some of this energy into studying, this investment into my relationships always seemed to energize me at the moment, and I know only helped to build my savings. Moreover, this investment has returned a huge network of friends that despite time and distance are not only standing beside me but are opening their wallets to support fundraising efforts that will hopefully find a cure for my cancer.
Somewhere along the way, I feel I forgot how hard I worked to build up my energy banks and moreover forgot that in order to keep my banks high, I would have to continue to make smart investments with how I spent my brain dollars a day in, day out. In university or high school, despite balancing probably over 100+ hours a week of activity, I can barely remember ever being tired or feeling overwhelmed because I had too much on my plate. However, as I review old journals post-graduation there seems to be a very little description of how I would have spent the thousands of brain dollars I must have earned. Moreover, I see a lot of entries that talk about how I was tired of feeling tired, which must mean that somewhere along the journey I also drained the huge energy banks I worked so hard to develop in high school and university. I read the pages and wondered “What did I spend all my energy on and why do I now have nothing to show for it?” As I continue to read the pages it becomes obvious. I squandered my huge budget and savings on two ridiculous expenses – TV and Work.
On February 16th, 2009, almost 3 months before I was diagnosed I wrote in my journal
“I know too well how I become at peace. Order, routine progress, achievement of a goal, and yet I let the TV take away all that feeling of worth. Hours lost watching fictitious people live their dreams and reach their greatness by sucking mine from me.”
Now I admire people who say “I don’t watch TV” or people like my brother who don’t even own a TV, but I don’t believe that TV is a complete waste of energy. I have my favourite TV shows (The Office, Top Chef, 30 Rock, 22 minutes) that I watch fairly religiously and if I stuck to a few hours a week, I think I could consider the expenditure a decent investment of brain dollars. But it was never just a few hours a week on shows I really wanted to see. Most of the time I spent my brain dollars watching reruns of Friends, Seinfeld, Family Guy, the Simpsons, and a myriad of ridiculous reality shows. On weekends it would not be uncommon for me to turn on the TV for breakfast and then 8 hours later still be on the couch watching reruns of shows I had already watched that morning. My TV marathons would often start because I needed to take an hour to unwind and relax, but as one show blurred into another, the TV would inevitably suck me in for one more episode, and when I peeled myself off the couch I would feel worse than I did before I sat down. Never once did I feel more relaxed or rejuvenated, yet the next weekend you would find me once again glued to the tube. There is no doubt that I had (have) a TV addiction but I justified my habit by rationalizing I had nothing better to do. I can realize now I had nothing better to do because all I did was watch TV.
In my pre-cancer journal, I spent a lot of time setting goals. Pages upon pages dedicated to describing the things I wanted to achieve and I would lay out detailed plans on how I would ultimately achieve success. Although the plans from entry to entry may be different, despite the time between entries, the goals were always pretty well the same. My journal content is embarrassingly similar and predictable. It starts with an entry that describes why I was disappointed that I have let myself down by once again not achieving the goals I had set out. In that same entry, I make a declaration that “This Time Is Going to be Different” or something to that effect, and then proceed to rewrite a list of goals I vowed to achieve. Finally, I create a detailed action plan on how I would achieve the goals. Following this initial motivating entry, there might be a few entries that follow could describe how I was staying on track, but at most this would last for 2 – 3 days. Inevitably there would be a huge gap in time between entries and predictably when I would open the journal again, I would repeat the above storyline I had used a thousand times before. In these redundant entries, there was always a consistent excuse I would use to justify why, once again, I had not achieved my goal – Work. An entry on September 27/08 documented my justification and frustration –
“My life has been about work for way too long – I am not doing my best because my life only works. I need more than work...It’s time I started treating myself with respect and putting my all into my life – not just my job.”
When I read these entries it becomes clear where the savings from my rich energy banks went; I squandered them away at the office. When I could have been investing my brain dollars into education, volunteering, exercising, or taking time to invest in my relationship by cooking dinner or completing other household duties, time and time again I chose to invest my brain dollars at the office, a lot of the times alone on evening and weekends. I remember once when I started my current role, I chose to spend a weekend working instead of going to an important wedding for Jared’s family. Although everyone said they understood, I know it was challenging for Jared to explain why I had put work ahead of his family. The most disappointing part is I can’t even remember what I worked on that weekend although I am sure I would have remembered everything about the wedding.
Jared has encouraged me for years to get a hobby. In recent years there have been a few instances when I was able to get my TV and work addiction under control and I spent energy on activities that I might call a “hobby”. If I think back to those brief periods, I know I felt better about myself and moreover, I was more productive at work, happier in my relationship, and inevitably I would have more energy to spend as a result. Predictably, however, an event like a new opportunity or project, a crisis at the office, or cold Calgary weather would pop up and I would revert back to comfortable habits. I would fall back into the vicious cycle of spending all my energy at work and drag myself home to spend my final few brain dollars investing in “relaxing” in front of the TV. I would invest nothing into things like my health, my mind, and my relationships. Each day I did this, I felt worse and worse and I couldn’t understand why working harder and relaxing wasn’t allowing me to feel better. Although I would set new goals to help me overcome these bad habits, somewhere along the line I just gave up and convinced myself that I just didn’t have enough brain dollars to accomplish all the goals I set. Looking back from my current perspective, I know I had more than enough brain dollars to achieve everything I wanted but I wasted all my money on poor investments.
Now I can be somewhat objective and realize maybe with work, my huge investment has resulted in some small returns. The extra projects and long hours did allow me to progress quickly into a senior position with a strong salary. Consequently, now that I have moved to a reduced monetary budget while on Long Term Disability benefits, I can still manage my expenses without a lot of changes to my lifestyle. Nevertheless, I believe I could have realized a similar return with a much smaller investment if I had been smarter about how I spent my time at the office. But with TV there is nothing I can show for the amount of energy I invested. Moreover, I feel the investment is actually costing me energy now as outside of TV, I have no real hobbies. In the fatigue session, I learned one of the best ways to reduce fatigue is to do things you really enjoy and to do things where you lose track of time, like a hobby. Had I invested some of my pre-cancer time putting down the remote to develop some interests I would have been able to turn these activities to help me mitigate the frustrating symptoms of fatigue.
I am still trying to find the balance between getting the most out of each day and maintaining a comfortable pace that allows me to keep my energy banks in the black. I am proud I have developed some new hobbies like writing, volunteering, and cooking which I can get lost in when fatigue hits. I am working to implement fatigue-fighting like ensuring I have lots of time between activities and appointments so I can relax if I need to. I know light to moderate exercise actually earns me some extra energy especially if I can exercise outside so I make it a priority every day. I revisit my key life roles often and I use these to prioritize how I spend my limited daily budget, intentionally spending on activities that will eventually provide me positive returns. Most importantly I am documenting how I spend my time as well as my energy levels to identify which activities add to my energy bank and which activities deplete my savings ultimately helping me to maximize my limited brain dollar budget.
Even with all this dedicated management, I do know there are going to be times when fatigue is inevitable. My biggest challenge is accepting that no matter how cautiously I spend my budget some days I am just going to be tired and sometimes there is nothing I can do to change that. Luckily I have found the energy I need to be positive comes pretty cheap consequently even if I am feeling completely drained, I can muster up the energy to do some positive imagery to help me mentally manage my fatigue. For instance, my symptoms are at their worse during my chemotherapy days and for the 4 days after I am done treatment. During these particular days when I get really tired, I like to envision that the chemo is literally kicking the crap out of my tumour. I see my four little pills, with tough-guy faces, brass knuckles, and steel-toed boots circling and attacking my tumour like your worst nightmare. Although I have never kicked the crap out of anything in my life, I imagine the act of really kicking the crap out of something could tire a person out, especially if you want to do it right. With this image in my head, I can stop trying to determine what I could have done to avoid being so fatigued and rather take accept that I am not just being lazy, but rather I am letting my chemo take care of business.
It shouldn’t have taken a cancer diagnosis to make me realize the value of a brain dollar but if there are any blessings in “incurable cancer”, it is an appreciation of a good investment. The good news is that with a recession, my fatigue too will also be temporary and the value of my brain dollars will eventually rebound. As I finish treatment, my medical team has told me I can expect my energy levels to slowly come back up, and moreover, all the good investments I am making now will help me rebound more quickly once treatment is over. Although I probably won’t ever be at my previous go, go, go levels, I am relieved to know my current normal is probably temporary and I look forward to a time when I can reallocate the brain dollars I currently spend on treatment to something else, like a new hobby. And although I may never be as rich as I once was, the lessons I have learned from living on a restricted budget will no doubt ensure no matter how many brain dollars I have, they will be invested wisely.
Update – Alyson finished treatment in late June 2010 and each month post-treatment her energy level has improved. She has reinvested this energy into new hobbies like yoga, reading, and Suduko and has also joined the University Alumni Chapter Executive as a volunteer. She continues to work with her medical team and naturopath to find ways to maximize her brain dollars.
My Naïve Choice – March 25, 2010
One thing I really miss about not working is my daily connection to students. Not only the connection to their positive energy but moreover the opportunities I had to interact with their academic pursuits. Although I have never held an academic role, I would always make myself available to students looking for input on classroom assignments. So when a SAIT student recently requested an interview for a journalism project, I enthusiastically responded, “Name the time and place.” We picked a time and completed a brief phone conversation about my journey so far with cancer.
When Jared asked me about the interview I told him the questions were fairly typical; tell me how you were diagnosed, what has changed for you, how did you tell family and friends, and so on and so forth. However, I admitted I found the first question challenging to answer. Jared inquired about the content and I replied “She asked me why I chose to take such a positive attitude towards fighting cancer.” I had given a typical response; that I had a strong support system, that so far treatment was going well, that I was doing everything I could to improve my health and that those things help me stay positive. However, I admitted to Jared that my response felt cliché as I really didn’t know how to react to a question whose answer seemed obvious. Jared reminded me that although reacting to a cancer diagnosis positively may seem obvious to me, not everyone would have approached my situation with the same positive perspective. My initial reaction to this statement was “Well why not? What other choice do you have but to try and be positive?” Jared simply smiled and said “There are lots of other choices” and turned his attention back to the television. I sat on the couch and turned my attention to the events that occurred during the initial days of diagnosis and I took a few moments to reflect on my chosen reactions during that critical time. Some key reactions immediately stood out.
Friday, April 23rd- After spending most of the day in bed with a headache I started to vomit. After thirty minutes of insisting by Jared that we go to Emergency, I reluctantly got in the car, and off to Foothills, we went. I was supposed to catch a plane that evening to go to Kelowna and was convinced I might still make the flight so I refused to call and cancel it. Three hours after being admitted through Emergency the results of a cat scan revealed a six cm brain tumour and the ER doc told me, I would be admitted that evening and would need brain surgery. My reaction – I turned to Jared and said “See I wasn’t faking” referring to the weeks I had spent in bed with a headache which Jared had at times questioned me if they were really that bad. Interestingly Jared didn’t find my comment very funny. He asked me if I finally realized I would not be making my flight and I grudgingly handed him my phone to call my friend Ange and tell her that I wouldn’t be making the retreat weekend I had booked to help with my headaches.
Sunday, April 25th - After being bumped from surgery I called my boss to let him know I wouldn’t be at work on Monday. I said “I have good news and bad news. The good news is that I know why I have been having the headaches that have caused me to miss work recently. The bad news is that I have a brain tumour. But I am having surgery this week to remove it. Not sure what recovery looks like but I think I need at least a week before I can come back to the office.” After a moment of shocked silence, he carefully responded “Alyson I need to reiterate what you have just told me so I am clear on the information you have provided. You’re telling me that the debilitating headaches you have been having are caused by a tumour that you are having emergency brain surgery to remove and you think you will only need a week to recover. Is Jared available or can I please speak to your doctor to get a more accurate picture of what is really going on?” I laughed and explained that I really had no idea how long I would need to recover but told him that in a week I would at least know when I could return to work. I told him that I understood I would probably need more than a week however silently I fully believed I would be back to the office in time for the June registration period.
Monday May 4th - I was released from the hospital after having brain surgery on May 1st. I came home to open a wedding invitation from my friend Fitz who was getting married early July and I was extremely excited to attend and be one of the two Emcees. In fact in the hospital I had made contact with her brother, my co-emcee to start discussing ideas for the big day. I enthusiastically completed the reply card, placing a number one beside the “Will Attend” space and then smiling as I added “minus one brain tumour” in the margin.
Wednesday May 6th – I sent an email to my closest confidants, my 12 girlfriends from university who with me make up the Bakers Dozen and my 8 girlfriends from High School, updating them on my progress. I told them funny stories about my time in the hospital and gave them the potential outcomes of my appointment on the next day. Although I admitted that a Grade IV tumour was in the realm of possibility, I closed the email with this thought “Now that I have let out all the "scary" stuff - Here is where my thoughts are at - Right now I have far too many positive people thinking about and
protecting me - I feel fantastic - I am young, healthy and am being treated by a world class team - I am absolutely positive that Thursday afternoon my update will be only positive news….now is not the time to exert energy on things we do not know - but to focus on what we do know, which is that I am well protected and I will be fine.”
Thursday May 7th – With Jared, my mom and dad at my side, I meet Dr Lim my radiation oncologist for the first time who tells me “You have Glioblastoma(GBM), which a grade IV incurable form of brain cancer. It is a very aggressive type of tumour and has fingered into your brain. We cannot remove it with surgery but with treatment we hope we can control it.”
Although less than a year has passed, it feels like a lifetimes since those defining moments occurred. I consider now my chosen reactions. To think that on April 25th I believed I would be back to work by summer and today the reality is that I am not sure if I will ever be able to return to work. To think that on May 6th I thought my brain tumour could be nothing but benign and that my summer would be spent attending events like weddings. Instead I spent my summer in radiation and doing chemo, which continues until summer 2010. To think that I would be “fine” after an emergency surgery to remove a 6 cm brain tumour and my life would return to the way it was on April 22nd; well, I can’t help but smile at how naïve I was to the potential result that occurred on May 7th. I reconsider Jared’s comment that there were other choices I could have made and interrupting his program I say “Maybe part of the reason why I am so positive is that I was really naïve to what the outcomes could be during those first few weeks. Maybe I wasn’t choosing to be positive, but rather I was just naïve”
Naïve is defined as “having or showing unaffected simplicity of nature or absence of artificiality; unsophisticated; ingenuous” or “having or showing a lack of experience, critical judgment, or information, credulous, i.e. She's so naive she believes everything she reads. He has a very naive attitude toward politics” Synonyms include, simple, unaffected, unsuspecting, artless, guileless, candid, open, and plain. Based on this definition I would unequivocally describe myself as naïve, not just in how I have approached my journey with cancer but in terms of how I have approached life. I often think people view naivety with negative connotations mistaking the simplicity of a naïve perspective for a person who is gullible or easily deceived and consequently easy to take advantage of. Certainly synonyms such as “plain” and “unsuspecting” may point to why naivety is misunderstood. When thinking about my naïve qualities I focus on words like, “open”, “unaffected simplicity”, and “lack of critical judgment” in naïve’s definition. I believe what differentiates a naïve person from a gullible person is the way naïve people curiously look at their world and believes that the world is predominantly good. A naïve person’s glass is always half full, they instinctually give people the benefit of the doubt and they naturally respond to situations with trust rather than suspicion. Specifically, “A naïve person is someone with a childish/innocent view of the world. The opposite of cynic really”. It is within this clarified definition that I am proud to include naivety as one of my strongest qualities.
Even though my initial positive reactions to my cancer resulted from my naïve understanding of the seriousness of the diagnosis, through my experience of treatment and my subsequent research on brain cancer I have a adopted a more matured appreciation for the severity of my condition. I am unfortunately far too aware that although my current treatment plan is very effective, GBMs recur in 99% of cases. I know that when recurrence occurs there is currently no approved treatment in Canada that will provide me more time. I know that I will need to be monitored by MRIs probably at least every 6 months for the rest of my life and that probably well before I turn 50 one of those MRIs will show the inevitable recurrence and with my family, hospice plans will be put in place. Through my choices to become more informed on brain cancer I have become less naive to the potential outcomes that lay ahead for me. Consequently, although my choice to be naïve helped me remain positive in the beginning, my choice to stay positive today with this matured understanding of my prognosis, must be credited to one of my other qualities. I consider the quote above, specifically that an antonym of naïve is a cynic and subsequently surmise; If an antonym of naïve is cynic, than a missing synonym of naïve must be optimism, a quality which has always influenced my choices.
I am not sure why but I know I am an eternal optimist. In my mission statement there is only one line where I talk about qualities I hope to personify. The line reads;
“I choose to invest my time being ever learning, always optimistic and ensuring I always keep my word.”
Optimists generally believe that people and events are inherently good so that most situations work out in the end for the best and there is no question I have always personified this intent. People don’t need to earn my trust, rather I believe people are genuine to their word and never suspect they would intentionally hurt, deceive or take advantage of me. I know no matter what the event or challenge, I will overcome it because I believe there is always a solution, it just may take me some time to conceive it. Furthermore my faith gives me confidence that things happen for a reason, so no matter how bad the situation there is a positive purpose in the journey that I can look to for hope. Sure there are times where my trust has been taken advantage of, where I have struggled to find a solution or when the journey looks hopeless but even in those dark moments my optimism seems to shine a light on the beauty that surrounds me and provides the will to keep going.
In reflecting on those first few weeks, I am very grateful I had the inherent qualities of naivety and optimism to guide my chosen reactions to the most devastating news of my life. My naïve optimism ultimately set me up to face this difficult journey with a positive outlook. Within those first few weeks there were ample opportunities where I could have chosen to be affected by the potential outcomes. I could have researched the brain surgery process and learned how close I could come to long term impairments. I could have researched GBMs and learned that people with a GBM on average live only 6 – 18 months. I could have recognized that a 6 cm brain tumour was probably not benign and that cancer was inevitable. I could have conceded that I had cancer and dwelled in all the negative things that cancer brings. I could have chosen to be a cynic. But what would that choice have achieved? I would have been stressed going into surgery, anxious in the days leading up to diagnosis and inconsolable once my cancer was confirmed. Instead I chose to be naïve, to focus on the good that surrounded me and I chose to believe that I was going to be fine. As a result of this naïve optimism I was able to calmly roll in and out of surgery, I recovered quickly and was able to return home only 2 days later. I spent quality time with family being open to their love and support. And when I heard the devastating diagnosis, I was able to share it with compassion and courage that only brought my loved ones closer to me and each other. In the darkest days of my life, I am so grateful that my naivety instinctually encouraged me to trust the world around me. As I continue on this journey, I could choose to spend my energy worried about what is going to happen or moreover waiting for the inevitability of a recurrence. But what would that achieve? I would just lose the opportunity to live my life. Moreover although my matured perspective shines a light on the darkness that lays ahead for me, it has also revealed research that is showing huge promise in developing new treatments that could be ready when my recurrence happens. This inspires me to believe that I have every reason to be and remain optimistic.
When I started my current position at U of C in May 2006, I found a quote that I gave to my colleagues and staff to motivate us through some extremely challenging projects. The quote by William Arthur Ward reads
“Real optimism is aware of problems but recognizes the solutions, knows about the difficulties but believes they can be overcome, sees the negatives but accentuates the positives, is exposed to the worst but expects the best, has reason to complain but chooses to smile.”
My aspiring journalist will be calling again in September to complete Part II of her project. I think if she asks me again why I choose to remain so positive, I would quote Mr Ward, and tell her that I naively choose to believe that everything in the end works out for the best. That quite simply with my current health, my support of family and friends, my response to treatment, the research that is being done, and all the things I am doing everyday to maintain my health, there is every reason for me to be positively optimistic. Considering the alternatives, really what other choice do I have.
The Biggest Step – May 7, 2010
Since moving to Calgary in 2003, I have fallen in love with hiking. Living a mere 45 minutes from the mountains it’s not uncommon on a sunny weekend morning, to wake up, check the weather and decide we need to get outdoors. Jared and I will grab one of our trail books, flip eagerly through the pages, choose a trip, and away we go. However, unlike my love for Jared, my passion for hiking was definitely not love at first sight. I remember my first hike in the mountains in the summer of 2002. Jared and I had been dating a mere 3 months and I had flown to Calgary to drive back to Ontario with him when he finished his 6-week optometry internship. I had been “hiking” before in Ontario and of course, I had been running on a treadmill in the gym so I thought the “intermediate” hike to Bourgeau Lake Jared had carefully selected would be no problem. Pulling into the parking lot I recall seeing a large steel gate in a fence and asking Jared what it was, to which he nonchalantly replied, “It’s the trailhead”. When I inquired why it was gated and fenced he calmly responded “To keep the bears in”. Great, I thought, let’s go into the caged areas with the bears, that sounds like the perfect trail I want to hike on. Seeing the nervousness on my face Jared tried to relieve my anxiety by explaining he had protection and showed me a can of bear spray. He also reminded me that I had probably developed some great endurance and hopefully speed from the running I had been doing at the gym so surely, he thought, I could outrun at least one person on the trail, explaining that you don’t need to outrun the bear if you can outrun at least one person in the group. Somehow his faith in my running abilities and the small can of aerosol spray (which interestingly was fastened to his backpack) did little to ease the images of “When Bears Attack” that were flashing through my mind. Nevertheless, we suited up, him in his outdoor gear, me in my running stuff, and into the bear sanctuary, we went.
I can’t remember how long it took us to climb the 7.4 km, 725 m ascent but I remember it feeling like an eternity. When running at the gym, 45 minutes would go by in a snap as I had the distractions of my CD and the 7 televisions in front of me so I never really focused on the steps I was taking as I ran. On this trail though all I had was the distraction of staying on high alert for bears and trying to keep Jared and the bear spray in my sight. With little distraction, time seemed to stop. I was frustrated there were no signs on the trail to tell us how far we had left to go, so when we passed a couple coming down I inquired if we were almost there. They smiled and shook their head no, before estimating that we had another hour to an hour and a half at least. Are you kidding me, I thought, and then spotted Jared ahead of me shaking his head. Suddenly my 45 minutes on the treadmill on incline 5 didn’t seem so impressive. Jared just smiled and kept trekking away. A little while later we crossed a beautiful stream and I remember seeing a gradual hill on the other side. I thought the hill marked the end and I breathed a sigh of relief that the worse was over. However, when I got up the hill and turned the corner I didn’t find the flat meadow I had anticipated but rather another slightly steeper hill was revealed, which inevitably lead to another corner which always revealed an even steeper hill. When I rounded the 5th corner and saw no meadow, I yelled to Jared – “What is @!*$ is this?” to which he again smiled and introduced me to the term “switchback”. After what seemed like 8 hours of climbing (Jared estimates it was only 2), we reached a flat meadow that opened up to a beautiful lake surrounded by mountains. There were other people there but the space was so big it felt like we were all alone. We found a rock and ate the sandwiches Jared had packed. We took some pictures and made friends with a chipmunk before starting our descent. I keep the self-portrait we took at the top in a spot I look at often and although I still remember the pain it took to reach the meadow, when I look at the picture I also remember feeling a great sense of pride in my effort and remember being in love. I remember it being one of the happiest moments of my life.
Over the years Jared has encouraged me to continue hiking and as I become more experienced I better appreciate that the harder the climb, the greater the reward. Accordingly, I am now more eager to search for more challenging trails rather than picking leisurely Sunday strolls. Jared and I have hiked hundreds of kilometers which have taken us to the top of mountains like Grizzly Peak in Kananaskis, Ha Ling Peak in Canmore and what I feel is our greatest ascent at 1570 m, Rundle Mountain overlooking Banff. Although we love a great day hike what we enjoy even more is backpacking. Most summers we try to get out on the trail at least 2 – 3 times for overnight trips where we have access to even more remote areas. I’ve had dinner in the shadow of Mount Assiniboine, taken a picture of the glacier that feeds Takakkaw Falls from the Iceline in Yoho, and sipped Berg Bellinis (a mixture of orange Gatorade and Lemon Heart Rum) as we waited and watched the top of Mount Robson, the largest peak in the Canadian Rockies, clear for a brief moment. On hikes now time seems to find a perfect pace as I have learned to calm my mind and be totally in the moment so I can focus on the experience as I take each step. Never in a million years would I have imagined that I would enjoy so much an activity where good food is dehydrated, a good shower is a jump in a glacier-fed lake, and good sleep is in a bear country protected by a thin layer of nylon and a good time is spent silently in self-reflection. But I guess I also never appreciated the lessons that all these good things would teach me.
On April 25th, 2010, Jared and I did our first hike of the 2010 season. After spending the weekend at Fairmont Hot Springs Resort in B.C. Jared found a trail not too far away in Top of The World Provincial Park. After an hour's drive along a gravel road switchbacking along the side of a mountain, we arrived at the trailhead to Fish Lake, a moderate 13 km, 250 m rise trek. We donned our boots and gators, adjusted our poles, and grabbed our packs filled with warm clothes, bear spray (again on Jared’s pack), water, and sandwich fixings before we headed off into the wilderness. As with most hikes when it’s just the two of us although we start together inevitably his longer stride allows him greater speed and on this trip, you combine that stride with my slightly lower energy due to the year of treatment, well, he got ahead of me pretty fast. This used to really annoy me and I would often spend time while hiking being angry at him for not waiting for me. I would think about a bear attacking me or seeing a hazard and imagine I might trip and hurt myself. As I catastrophize about these improbable situations I would get angry he was so far ahead, rationalizing that he was too far away to help me when my inevitable downfall would happen. However, over our journeys, I have realized this negative mindset only serves to distract me from enjoying the experience of the hike inevitably blinding me from seeing the beauty in the journey. Although I may not be able to protect myself from a bear, realistically two of us might not have a better chance together. Being a slightly clumsy person, falling and hurting myself is realistically the greater risk to my safety. Certainly, I could take care of myself if I were to twist an ankle or fall and let’s be honest, it would have to be a fairly serious fall for me to hurt my voice enough that I couldn’t alert Jared to come back to check on me. With this confident perspective when Jared now inevitably strides off ahead instead of thinking about all the things that could go wrong, I try to focus on all the things that are going right, most specifically focusing on enjoying the opportunity I have to be in place so few people will ever experience and be grateful I have the health to be able to take each step of the journey.
Even on the most modest of day hikes, we typically spend a good 3 – 4 hours hiking. When it’s just the two of us I would say 75% of that time I spend on my own. It’s rare I have that amount of quiet time in my life, and I put the time on the trail to good use by investing it in self–reflection. When I was working I would often use this time to think about work however on April 25th, 2010, it had been a year since I had been in the office so instead of trying to solve my professional problems, I took time to reflect on the body of personal work I had achieved during this past year.
I thought about April 2009 and how pivotal that month has been in my life. It all started on April 9th when I went to my family doctor to simply inquire about my depression and discuss briefly the “mild” headaches I had been having for months and were now keeping me home from work. He sent me for blood work which I found out on April 15th was pretty well normal. We discussed my poor lifestyle (poor eating, no exercise, too much stress) and the dramatic weather changes. We both agreed that changes in these factors would probably be the best first step to addressing my headaches and depression and I left feeling motivated to take better care of myself. I remembered waking up on April 16th to another pounding headache and feeling guilty about calling in sick to work once again. Over the weekend the headaches progressed and as I spent days in bed watching TV I remember how I felt ashamed and lazy that I couldn’t find the motivation to get out of bed and do the things I thought would help take away the pain. On Monday, April 19th when I called in sick again I remember Jared insisting I go to a Walk in Medical Clinic, even calling me mid-morning from work to ensure I was going to go. I remember walking out of the Medical Clinic with a referral for an outpatient CT as a “precaution” and the attending doctor advising that my headaches were probably, again, related to the weather and my lifestyle. I remember going to work on Tuesday and Wednesday and sitting in my office frustrated I couldn’t find the focus to complete the final three performance appraisals I had been working on for three weeks. Instead, I spent much of the day playing Bejewelled between trying to manage my headaches. On Thursday morning at our staff meeting, as we were having problems with lateness and absenteeism, I thought I should lead by example and I apologized to my team for being late and absent over the preceding three weeks. I informed them I was seeking medical attention to hopefully identify and resolve the problems. Later that morning I left my office and spent 45 minutes in the bathroom trying to relieve my headache until I decided that I should go home and rest. I took the bus home, had a nap, and then went to the gym for an appointment with my trainer thinking I needed to start pushing myself to eat better and exercise, as lying in bed was obviously not helping. Nevertheless, I left 35 minutes into the session because the headache was so bad. I smiled as I remembered the events of April 23rd, 2009 when I woke up with another headache and booked a deep tissue massage to relieve it. Jared was off work and drove me to my massage and met me afterward. After the massage, I thought I felt better and attributed my headache to hunger as I hadn’t eaten breakfast. We went and got some noodle soup which I barely touched. Then he dropped me off for a haircut. As I changed into the robe, I had to sit down I felt so dizzy. During the haircut, I almost fell asleep twice. After the cut, I had to step outside to get some air before I paid as the pain was so intense. I called Jared who picked me up and when I got home I literally crashed into bed. I was supposed to fly to Kelowna that evening for a Yoga/Meditation retreat weekend and even though I hadn’t packed, it hurt too much to stand up. Two hours later when I started vomiting, Jared told me he had had enough and dragged me to emergency at Foothills Hospital. I was admitted a few hours later after a Cat Scan found a close to 7 cm tumour in my right frontal lobe. A week later on May 1st, I had brain surgery and on May 7th I was told I had a Grade IV Glioblastoma which is an incurable form of brain cancer.
As I hiked up the mountain to Fish Lake, I reflected back on what I was doing a year earlier, April 25th, 2009, and smiled remembering that I was in the hospital awaiting brain surgery. I thought about the visitors that came by, remembered the conversations I had with my family who had all flown out and smiled remembering the beautiful flowers, gifts, and cards that were delivered. I thought about the brown gift bag that sits on my desk where I keep the cards and planned to spend some time on May 1, the anniversary of my surgery, sitting and rereading the messages I had received a year ago. I was again grateful for the quality of care I had received during my time in the hospital and for the compassion that was provided to me and my family when we received the worst news of our lives on May 7th. I stopped for a moment as I hiked and teared up remembering the response from the dozens of phone calls I made May 7th – 10th where I told the people I loved the devastating news that I had incurable cancer. As I exhaled in that moment of reflection, I remembered the compassion and courage it took for me to make those calls and recognized for the first time the role those calls have played in bringing my family and friends closer together, during what is surely one of the most challenging experiences in our relationship. As I looked over a canyon river I took one last moment to relive that experience and I felt extreme pride in how I responded to the worst news of my life.
As I slowly started marching back up to Fish Lake my thoughts quickly moved from reflecting on specific events and activities that have occurred over the past year and instead I started reflecting on all the things that have changed. Although only a year has passed, I look back to the person in the hospital bed and feel I am a very different person today. I feel for the first time in my life I have started to personify all the values I have told people that are important to me. For the first time, I feel I am living an authentic and genuine life. I had talked the talk for many years about being healthy and “protecting my health as my most precious resource” but a year ago I was 165 lbs, eating out almost every day and only exercising to try to lose weight. Today I am 145 lbs and I receive compliments all the time that I have never looked better. I have accomplished this not by calorie counting, but rather by walking the walk and “investing into my body’s healthy development every day” with every food choice and making time for exercise daily, even if it’s only a light walk or an easy yoga session in my bedroom. I make these choices not to see a number on a scale but rather because I genuinely place a high value on my health. A year ago, although I talked the talk about being “grateful for the blessings of friends and family whose relationships I will make a priority to nurture” often the relationships most close to me I would only make a priority when I had nurtured all my work priorities first. I tried to stay up on personal emails but inevitably work emails always got in the way, even on weekends and in the evenings. Today I take time daily to recognize the milestones of my friends and my first priority in the morning is to answer personal emails before getting into my volunteer or writing tasks. My brother and I, who a year ago might have talked once a month at most, now speak to each other almost every week and I speak to my parents almost every day. A year ago my role in my household was limited and scheduled only when work didn’t interfere. At best I might have picked up groceries or cooked dinner once a week, but most of the time I would come home late, quickly eat the meal that had been prepared for me without thanking the chef Jared, and would then proceed to the bedroom to do more work. I ignored my home responsibilities selfishly not realizing the impact my ignorance would have on my most important relationship, my relationship with my partner. Today it is rare that dinner isn’t ready when Jared comes home, that the fridge isn’t full, that the laundry isn’t done when we need it or that the bed isn’t made daily. Through these genuine actions I acknowledge the value I place on my relationships and I feel I am finally walking the walk on nurturing these relationships as a top priority in my life. I smiled as I reflected on these and the other examples of authentic actions I feel I have adopted over this past year and am proud of the genuine work I have produced.
As I turned my attention back to the trail, I thought about the recent comments I had been getting from friends and family about my upcoming 1 year anniversary of diagnosis. Although reactions are different, the common theme of the questions is typically related to what I feel has changed the most this year. This is always a difficult question for me to answer because I feel everything is so different from a year ago. Consequently identifying one specific thing as the defining or biggest catalyst for change seems to minimize the importance of what this year has meant in my life. As I thought about this challenging question, I became aware of each step I was taking in my hike up the trail to Fish Lake. I realized that trying to identify the “Biggest Change” by asking me to identify a single most significant action this year, was like asking me which step was most important to ensure I got to Fish Lake. It’s a challenging question because there is no single step in the hike that would ensure I get to Fish Lake. Rather it is the cumulative result of taking each step inconsistent succession which will ultimately result in me reaching my destination.
When I think about the “Biggest Change” that has resulted from this year, I immediately think about how proud and confident I am of the actions I choose to take the day in and day out. But I was curious to see if I could identify what was at the root of this newfound sense of confident pride? Interestingly as I focused on this sensation the image of Jared and me on our first hike immediately came to mind. I recognized the self-pride I have developed over the past year, I also felt sitting with Jared in that moment of accomplishment at Bourgeau Lake. I realized my love of hiking is more than just looking at spectacular views or challenging my endurance, but rather hiking has taught me inherent lessons, that no doubt I have applied to help me develop such a genuine sense of self and positively manage such a pivotal year in my life.
When I hike, it is one of the only times where I am forced to stay in the moment as although I might have a map that describes the journey, until I am on the trail itself I never really know what terrain I might encounter. Consequently, I have to stay focused on each individual step, watching for fallen branches, roots, or other hazards and carefully placing each step to ensure I safely reach the end. When the terrain permits I can let my mind wander and for a few moments I might lose track of the immediate task at hand which is hiking. Inevitably though, it is always in the moment when my mind strays too far that I miss a root or step in a soft spot of snow and sink, ultimately hurting myself and potentially disabling me from reaching the end. This slip refocuses me back to the present moment as I recommit to ensuring my next step takes me safely in the right direction. When I hike I also can’t control the direction of the path nor can I try to control the path to ensure I take what I believe is the most efficient or easy journey. Inevitably the trail always seems to take the path of most resistance and just when it seems like I have gotten into a comfortable pace the trail will reveal a series of switchbacks to challenge me. I might, at the moment as I struggle up the steep terrain, question whether the effort will ultimately be “worth it” once the path is complete. However, I have learned the trail always provides recognition equal to the effort I have given to the trail. For instance, a short straight walk might offer a beautiful forest and quality time spent with a friend chatting about life. Whereas a strenuous climb might offer me a breathtaking view from a mountain top, where I might see the trailhead in the distance and I can spend a moment literally reflecting on how far I have come. Finally, the trail keeps me at the moment by only allowing me to see a few hundred meters ahead. Along the way, I might get a marker that tells me how far I have gone or in some cases give me an option to go another way but these signs are few and far between at best, and most of the time I just have to put one foot in front of the other and have faith that if I keep walking forward I will reach my destination.
When envisioning my last year I can completely relate the journey of my first 12 months with cancer, to almost all of the journeys I have had hiking. On May 7th they told me my treatment, or described the terrain I would face in the upcoming year, however, I didn’t know how I would react or what each day would be like until I lived it. So I chose to take each round of treatment day by day, step by step. I sometimes make plans during treatment, however just like I know I have to watch for roots and branches, I always make arrangements to ensure that these plans do not disable me from completing the task at hand, which is the successful completion of my treatment scheduled to end in June 2010. Most trails I have hiked are not a direct line to the end, but rather they turn, climb, drop, and climb again, sometimes with no apparent rhyme or reason. So too has my journey in my first year with cancer been. Some days are easy, some days are great but some days, for no reason, are just down. And just like the hike, all I can do is put my head down and keep trekking away, knowing eventually the path will get easier if I just keep moving forward. This past year I have only been able to see a couple of months ahead, as I am basically making plans on how my last treatment and MRIs have gone. Along the way, I have been given some indication from my oncologists or medical team (largely based on how I look and my blood work) that I am doing “well” however no one can really define what “doing well” means for me in the long term. I have learned I can’t control necessarily how I am going to feel tomorrow or in the future. But I accept that focusing on a potentially negative future will only work to distract me from the fact that I feel good today. Just like you never really know where the trail is taking you, in terms of my prognosis all I can do is have faith, that what I am doing is moving me in the right direction and I just need to keep moving forward and trust that I am on the right path. Finally, the journey I have taken this year has been a strenuous climb, full of the switchbacks of 3 weeks off, and 1 week on treatment. However I have taken time on the straightaways between treatment rounds to exercise, meditate, write, journal, and connect with loved ones and when I look back to the trailhead, or the beginning of my journey with cancer, I can see my new body, my website full of essays, journals full of entries and intensely strong connections with the best people in the world. And although the climb is far from over, I know the view will only get better.
As I hiked up to Fish Lake, there were occasions when Jared would stop and wait for me to ensure I hadn’t gotten stuck in a snow hole. When I would catch up he would jokingly ask “Why are you so slow?” On most trips previous I would make some sort of crude retort back or potentially make an excuse on how my ankle hurt or I hadn’t eaten enough and that was the reason for my poor performance. But on April 25th, 2010 I simply responded with “I didn’t know it was a race. I feel like I am right on time and exactly where I need to be. What’s your rush?” Although I know Jared was joking, my response got me thinking. Inevitably once we got to Fish Lake our plans were to make sandwiches then we would turn around and go back to the car. Our experience was never about getting to Fish Lake but rather it was about the journey that was most important and deserved to be appreciated and savored, with every step. Similarly, there is no destination in our lives, but rather a series of steps we walk each day that take us on different paths, some hard, some easy. Although we choose what path we might take, we can’t always see or control where that path may lead us. Moreover, when we rush to get to the end of the path to see what the future holds we ultimately miss out on most of the experiences we have in the present and really isn’t where we are right now, the most important place we need to be. In thinking about all the positive changes I have made during this pivotal year, all of them have resulted from stronger confidence that I am exactly where I need to be and moreover to “walk the walk” all I need to do is to focus presently on each step of the journey and trust that my path will continue to lead me to bigger, more positive changes yet to come.
The End of an Era – June 27, 2010
On no doubt a beautiful day, sometime in April 1999 I was sitting on a couch in the Student Life Centre at the University of Waterloo when I was handed a green invitation to “Last Call; An end of an Era Celebration” occurring on the last night the boys would be living at 366 Hazel St. For the close group of about 50 of us who were part of Village Orientation Committee (VOC), the incoming crew of 1996, 366 Hazel St had been somewhat of a home base for pre-bar festivities throughout our undergraduate career. Additionally, when a venue couldn’t hold our group, like in 1996 when VOC was uninvited to the Village Charity Ball, 366 Hazel became the venue and always offered the group a perfect setting to help solidify the bonds of friendship long after orientation was over. As one of 366’s regular house guests, it was rare a week would go by where I didn’t find myself watching the Matrix in the basement, drinking sloe gin on the front step, or walking in the back door at 2 am to crash on the couch when the walk home from the bar was just a little too far to manage. So as many of the 96 VOC crew prepared for graduation in April 1999, it seemed fitting that 366 Hazel would be the place we would say goodbye.
Exams were in full swing but during study breaks at Club D.C. (our name for the Davis Centre Library), we would make plans for the big event. Although there had been countless events under its roof, it was agreed that if any were going to blow the roof off, it would be Last Call. When exams finished more than 50 of my closest friends piled into 366 for one last night together. We sang the silly songs we were taught on our first pub crawl, we commiserated over the challenging projects and professors we had endured and we laughed as we reminisced about evenings spent together. We forgot about all the hard times, the bad grades, the all-nighters, the hungover mornings, the breakups, and the failures and instead chose to bask in the seemingly lifetime of memories we had shared in just 3 short years. In a pre-Facebook, Twitter, and cell phone era, we used old school face-to-face time to build our strong friendships, and even though we were all excited to transition to the next stage there was an unspoken sadness that lingered, reminding us of the era of face time was over.
As the night drew to a close I gathered everyone in the living room to present “Last Call – The Video” a slide show of photos from the past 3 years together. Throughout the video, we were reminded of the breadth of experience in our friendships and although we had spent the entire evening talking about all these events, the pictures began to articulate the unspoken moments our memories could not describe. They told us these were not just the pictures of the best times of our lives but rather they were pictures of the most defining moments of our lives. The invite was right, it was the end of an era and as the video faded to black the last lyric we heard was “Every new beginning comes from some other beginning’s end…”
With Last Call drawing to a close we began to talk about the new beginnings we were embarking on. For some it was travel, others grad school, a few were starting careers, several were still looking for work and many of us had decided to take the scenic route and were coming back for Year 5. Regardless of the details of our immediate plans for the next phase, we looked forward with anticipation to the life that lay ahead, confident that although one era was ending there was an equally promising new era beginning awaiting us. We had made it through university and now it was time we finally got to step into the real world. The hard work was done, real-life could start.
When I am back in Waterloo visiting I often drive by 366 Hazel and I can’t help but smile when I think of how we all saw our futures. Call them rose-coloured, call them beer goggles, but the outlook we had of our futures was at best, a narrow perspective of the reality of real life. Although some may have expressed uncertainty about what lay ahead, just as we chose not to discuss the challenges we faced in university when we discussed the era of real-life we imagined only the best parts we assumed awaited us. Successful careers, travel to exciting places, beautiful homes, hanging out with interesting people, finding the love of your life, settling down with healthy children, and of course living happily ever after. We had worked hard in university and had been told because of this hard work the doors to our “happily ever after” were now just waiting to be opened. So although we were all sad to leave Last Call and end such a defining period, knowing such a great new beginning was within reach, making it that much easier to let go and move on.
Of the 50 plus friends at Last Call in 1999, there are only 15 or so that I am still in regular contact with. However, now that we have evolved to the era of Facebook, even without our old school practices, the Last Call Club has been able to keep in “friendly” contact. Through status updates and the odd message, it seems the promises of success, family, health, and wealth are generally working out for everyone. That being said, I think all of us would agree that our vision of “happily ever after” definitely blinded us from acknowledging the challenges that lay on the real-life horizon. Between the many positive moments, there have been real-life realities that we knew existed in 1999 but could never imagine these setbacks awaited us when we opened the doors to our new beginning. In just a decade we’ve experienced job loss, miscarriages, divorce, debt, foreclosure, loss of loved ones, specifically siblings and parents, and my contribution to the reality mix, an incurable cancer diagnosis. The Last Call Club would have no doubt expected some setbacks to occur in the 10 years after we closed the door at 366 Hazel but I wonder if we had been able to see the true reality that awaited would we have been so excited to move on?
I have now come to the end of probably the most important era of my life; the era of cancer treatment, which began on April 23rd, 2009 when I was admitted to the hospital and ended on Saturday, June 26th sometime around 10 pm MST when I took my last chemo pills after an evening watching Star Wars in Concert with Jared. This era consisted of approximately 460 days in treatment and recovery, including 9 days in the hospital, 1 day in surgery, 111 days on steroids, 30 days with radiation, and 102 days taking chemo. Some would say that I am “lucky” that despite all the treatment I have had a mere 3 days of vomiting and only a handful of days on the couch. While I agree that compared to other cancer survivors my limited side effects to treatment may have been “lucky”, it’s still hard for me to feel fortuitous about what I have endured over the past year. Although I may not feel lucky, I do feel grateful my experience hasn’t been as “hard” as I had expected nor as “hard” as many of my cancer peers who would envy the fact I can count on one hand the number of days I spent close to the bathroom.
For most cancer survivors the end of treatment is a moment to look forward to. There are reassurances from doctors and nurses that once treatment ends, fatigue will be replaced with energy, the fog of chemo brain will begin to lift, scars from the surgery will heal, hair may grow back, return to work can be considered and you can step back into your old life. For many of those that did a hard time during treatment, there is also the possibility of hearing the words that matter most to any cancer survivor – “The Treatment Worked- You Are Cancer-Free.” Yet even with those magical words, I think few can ever feel free enough to completely close the door to cancer and reopen the door to their old life.
For me, the past few weeks as I have approached the end of treatment have been the most anxious and most mentally challenging period of the entire 460 days. Although I am excited to not have to plan my life around chemo every 3 weeks, as a planner at heart, there is something comforting about having a schedule I can rely on. What that schedule means is that every 3 weeks my cancer is getting its ass kicked and although I feel like hell a lot of the time, I have peace of mind that I’m winning the fight. When I look at the end of treatment through that lens, speaking candidly, I envy the hard work other cancer survivors have to endure. Of course, I would never wish the horrible experience of harsh cancer treatment on anyone and though I know even hard treatment doesn’t always work, I would have traded my “easy” treatment era for the hardest experience you could imagine if it meant that there was a possibility I might hear those magical words – You Are Cancer Free.
Just like in 1999, I am about to close the door to one era and open a door to real life, except this time the door opens to real-life WITH cancer. Unlike in 1999, the glasses I look through when I open the door to real-life with cancer don’t come with any blinders. In fact, there is advice and predictions on some of my biggest questions to help prepare me for what will happen when I open and step through the door to life with cancer. Questions like
Will I go back to work? Of course, you can return to work, but probably at reduced hours would be best.
Should I continue to invest money into my holistic approach? – Absolutely – it can’t hurt you.
How about my dreams of a family? Give it at least a year and then you can probably think about it.
What about recurrence? No need to talk about that right now – considering your age, and how well treatment went, we have a long time before that is a consideration.
Wearing my Last Call lenses, it seems that life with cancer may not be so bad but I have matured since 1999 and have learned it’s the unspoken truth that lingers around us that always paints the most accurate picture of reality.
The truth is that although I will most likely return to work I will probably never be able to manage the pace I once set, which means that I have probably reached the top end of my career at 33. Moving to reduced hours would allow me opportunities to still work while balancing my health however reduced hours also mean a reduced salary and consequently a significant change in lifestyle. Sure I could look to work for myself, and go after my dreams of being a professional speaker, but what about insurance which I can’t qualify for anymore. If I work for myself it means when I get sick again I have no income to support me.
I believe my investments in naturopaths, supplements, nutrition, yoga, and exercise have all played a significant role in how “easy” this treatment era has been for me and I am committed to continuing this lifestyle in the next phase. But speaking candidly, it’s hard to not feel resentful that to support this approach I have to invest thousands of dollars annually to keep me healthy and as such, I can’t invest that money into other dreams such as buying a house, planning a wedding or traveling. Dreams I see friends and colleagues realize every day. And even though I know all this investment will improve my quality of life, I wonder if the investment sacrifices I am making will provide the return on investment I seek when the truth is that there is no guarantee any of these expensive approaches are ultimately going to give me more time.
In a year, with a continued investment with my naturopath, maybe my body might be clear enough from toxicity to support creating another life. But what happens if during pregnancy I have a recurrence? While pregnant, treatments such as surgery or other chemo and radiation options would surely jeopardize the health of the baby but without them, I would most likely not survive. How would we decide between baby or me? And let’s be honest, there is no cure for brain cancer, and I know even though treatment has been “successful” it’s just a matter of time before a recurrence. So ethically, is it selfish to even consider having a baby knowing I will probably not be around to see their high school or even middle school graduation? The unspoken truth awaiting me when I open the door to real-life with cancer is the hard reality that recurrence is going to happen, probably before I am 45, and when it does, as of today, there is currently no treatment covered in Canada to help me.
Despite nausea, fatigue, constipation, and the depression that has persisted in my era of treatment, this era has also brought security, at least for the moment, that recurrence is unlikely. Although I am proud of the work I have done to invest in my health during this era, as I reach the end I am realizing that the security I receive from my monthly chemo dose has played a key role in making this era of my life “easy”. When I awake on June 27th, and I close the door on the era of treatment, I also close the door on that security and I will have to find ways to survive all the insecure realities of life with cancer.
As I stand in the foyer between closing the door to the era of treatment and opening the door to an insecure life with cancer, I am overwhelmed with emotion. Some like depression, hopelessness, and fear feel like a trap door that once I open it, takes me to a free fall into darkness. Others like anger, resentment, and anxiety feel like a prison door that lets me see everything around me yet holds me back from actively engaging in what I love most. Finally, there is love, confidence, gratitude, and hope that feels like a gate to a long gravel road leading off to a bright horizon. I think back to Last Call remembering what I envisioned for my “happily ever after” and despite having over a year to accept my cancer diagnosis, looking at the doors that surround me, it still feels surreal to accept these options as my life’s actual reality. But just like in 1999, whether we were ready or not we had to move on, and on June 27th so must I. But through which door, it’s still unclear. If there is one thing I have learned from the era of treatment is that all doors inevitably lead you to the same spot, which is your life. The doors just give you the different paths to get there and sometimes you have to go through all of them to reach the end. Unfortunately, although only 33, I am keenly aware of what inevitably awaits me through whatever door I choose I can take solace that I can’t predict how long it will take before I reach the horizon and I try to believe my sunset is still far in the distance. As I choose my first step, I find calmness and hope as I see a quote on the foyer wall by Albert Einstein which reads “Knowledge of what is does not open the door directly to what should be.” I smile and realize there is nothing to feel insecure about; this is my life and I know I will find a way to not only survive but thrive. It’s the Last Call for treatment and a new beginning awaits me through the gates to life with cancer.