Quality vs. Quantity

I found myself last month frantically racing against the clock to figure out which of the myriad recreational activities I should select for my children this fall.  It was terribly disheartening watching all of the good swim lesson slots being scooped up with every refresh of my screen, and even more stressful trying to coordinate the lessons with our increasingly busy schedule.  Then, just as I had it all figured out, I started to have doubts.  Maybe now is the time for her to start dance classes?  Or gymnastics, I loved gymnastics so perhaps she will too.  Oops, I've forgotten about skating, when does that start again?  Before long, I was mapping out the various activities on a large grid, scribbling course codes into what looked to be some sort of Venn diagram in a vain attempt to make sense of this madness while cross-referencing my Google calendar. 

Then, thankfully, reality struck me while I was chatting with an old friend.  I was reminded of a simpler time in my life, a time, long before marriage, kids and of course, cancer, when I had roamed the world free as a bird, relishing every moment for what it was and most importantly, taking time to breathe. 

At age 26, I’d abandoned all of my worldly possessions (furniture, housewares, décor and most of my wardrobe) and left Canada to teach English in the beautiful city of Porto, Portugal.  I ventured out into the unknown, hoping to find a job and a new life on the other side of the pond.  What I found was so much more, and it made me the person I am today. 

26-year-old-Ellen had wanted to travel and to see the world.  She wanted to help and motivate others through teaching.  She woke up looking forward to what each day would hold, and was excited about whom she might meet, so she kept her chin up and her eyes peeled.  She didn't schedule every hour of every day of her week, and yet she managed to get more done in a day than she ever has since.  She often worked 12 hour days, yet still had energy to meet up with a friend after work, and to wander the countryside by rail on the weekends.  Learning a new language was a pleasure, not a chore, and she was amazed by how people could be so different yet so similar halfway around the globe.

Thinking back to this time in my life was something I did frequently, but each time prior I had dismissed the possibility of regaining that state of bliss, chalking it up to my having been young, single and free from responsibility at the time.  Now, I started doing some heavy thinking, wondering, why had I been so happy?  How had I found the time and energy to do everything, all the while working full time, commuting an hour to work each way, grocery-shopping at 11pm, and preparing class schedules by candlelight because I hadn't figured out how to contact the hydro company yet? 

The answer jumped out at me in a photo I’d taken during a visit to Portugal.  It is a simple photo, a snapshot in time, but its beauty is limitless, not for what it depicts, but for what it represents to me.  When I came across this photo, it was suddenly very clear to me why life was so different today than it had been back then, and most importantly, it revealed to me what life could be like again.

   

What secret did the photo reveal?  It’s simple, really.  But first, let me fill you in on what’s happened since my last update in March, and how I arrived at the conclusion that my story shouldn’t end there.

Survivorship

To me it’s always been a foreign term and one I am quite at odds with.  Yes, I underwent breast cancer treatment, and yes, I continue to face the challenges of life post-treatment, but I’ve never once felt like a survivor.  I don’t mean any disrespect, especially to those who are fighting their own battles.  I’ve just never felt comfortable with this title as I’ve never felt as though I was fighting cancer.  I accepted my diagnosis, embraced treatment and put it in my mind to rid myself of cancer in one fell swoop, so I could move on.  And I did.  So that should be where my story ends, right?

As I alluded to in my last post, life after treatment has surprised me by its unpredictable nature.  It has not been easy navigating a disease that focuses so intensely on the active treatment (chemo, surgery and radiation) phase but offers little for the post-treatment denouement.  Active treatment is so structured, so intense and so aggressive.  You are running full tilt and have no time to stop and think about the myriad events that are filling your days.  You have a wealth of resources at your disposal, yet you likely don’t know about them.  If you’ve miraculously found a means and the time to learn about complimentary therapies, you have limited time to pursue them.  Things like naturopathic medicine, acupuncture, counselling, nutrition classes, chiropractic, yoga, etc, have recently boosted my recovery, but in hindsight they would have been far more effective in combination with my primary treatments.  Thankfully, active treatment was, for the most part, very manageable and the support I encountered, both professionally and personally, was paramount.  But I’ve come to appreciate that a more holistic approach to fighting cancer, using all possible therapies in collaboration with one another, should be the norm.  Undoubtedly, it would have better prepared me for the challenges I faced post treatment.

I’ve grappled with whether or not I wanted to speak publicly about these challenges in my blog.  After all, the purpose of my blog has always been to inspire others, to be that voice of optimism we all long to hear, and to add just the right amount of humour to lighten the mood.  Recounting my experience during diagnosis and treatment was one thing, but survivorship has been an extremely personal experience and not one I was sure I was ready or capable of sharing.  It is one thing to admit self-defeat but an entirely other thing to put it out there on the inter webs.  Mainly, I was not confident in my ability to clearly articulate my current mindset and didn’t want to do it, or me, any injustice.  But in order to continue telling my story I knew I had to find a way to include this, my latest chapter.  Please humour me and read on, and accept my sincerest apologies for staying away so long.

Lost in the fog

Without a doubt, brain fog has been the most challenging side effect of cancer.  Whereas physical side effects tend to be well understood and talked about, cognitive issues are not.  I actually went 6 months thinking that brain fog was solely memory loss.  It didn’t explain all of the other cognitive changes I was experiencing.  I was stumped as to what to do about it and spent a lot of time thinking I was losing my marbles and wondering when they would come rolling back.  Then, just after making the decision not to return to work in the fall, the stars aligned and I was given a spot in a cancer-related brain fog program offered by the Maplesoft Centre.  Led by Dr. Heather Palmer, we explore tools and techniques to improve our ability to process, retain and retrieve information.  We learn the theory, do concrete exercises to test the techniques, then are assigned a real world exercise as homework.  It is truly mind-boggling how much this has affected me, and I look forward each week to coming together with ten others who have all experienced cancer-related brain fog.  

When I heard the term brain fog I immediately associated it with memory loss and that is a huge part of it, but far too general.  I do often forget common words and every day expressions, but I’m starting to understand that it may not be my memory that has been impaired, but rather my ability to retrieve the information that is stored there.  There are many theories as to what exactly has happened to our brains, but the gist is that parts of my brain, be they pathways or connections, have been affected by either the chemo, the cancer, or my immune system’s response to the cancer (or all of the above, we don’t really know) and this has resulted in a number of cognitive impairments.  I’m going to attempt to explain how brain fog affects my daily life, not only for your benefit, be you breast cancer survivor, concerned family member, dear friend, or curious onlooker, but also for my own benefit; writing it down boosts my chances of remembering what I am dealing with, and ultimately, should remind me of my coping strategies.  I think I’ll put them in a list here, as I sense this is going to be a lengthy post!  I came up with a useful meaning for an otherwise annoying acronym: 

 

My BFF – Brain Fog and Fatigue

I have a lot of difficulty and require much concentration in processing what you are saying to me.  Those pauses after you ask me a question are the mice running around inside my head trying to catch up.  “Hmm, he’s finished talking.  That was so nice and well said.  Oh wait, you were talking to me.  You were asking me a question, right.  Now what did you ask again?  And what was the subject of our discussion?” 

You may notice that I ask you to repeat things, or that I repeat things I’ve just said.  You may notice that I ask you to repeat things, or that I repeat things I’ve just said. 

I start a sentence and if distracted, even for a moment, will forget my point and often the entire thought.  

I reach for words (don’t we all) in virtually every sentence I utter, but you may not notice this as I have become better and better at hiding things vis-à-vis an exorbitant amount of run-on sentences that never really get my point across but keep the conversation going nonetheless giving me the illusion of being my coherent, formerly articulate self.  Finally, my lifelong ramblings are serving a purpose! 

I often require complete silence to form a thought/response and must spit it out quickly before it is lost.  “Just a sec” is my catch phrase, and my poor kids, as “a sec” can vary from minutes to an hour to me forgetting altogether.

Stop the madness!

Below are a few of the external strategies I am using to promote encoding and retrieval of information.  Good news - they are working! Last week I learned some internal strategies, but I haven’t encoded them yet (or I have, and can’t retrieve them) so that will have to wait until my next blog post.

Self-talk

Talking out loud helps tremendously; you will often find me repeating the same words/sentence over and over as if trying to memorize them when all I am doing is telling myself that I am going to fetch something and where.  Talking aloud tends to happen in unison with b-lining it to my destination.  Sound crazy?  Oh how I wish it were not true, but how can you not laugh at all of this? 

List it

If I was once a list queen, I have become supreme list ruler of the universe.  My lists not only keep me from forgetting things/errands/children at school, but also enable me to map out my plan for the day.  Whereas in past lists were useful for remembering groceries and errands, my new lists are detailed, structured plans of where I am going, when and in what order.  I simply can’t head out the door and think strategically on the fly that I should first go to this part of town, then this, then that.  So I do this planning in advance, on paper, and then pray that I don’t misplace or forget the paper. 

Microwave timers aren’t just for time outs anymore

My microwave timer is my best friend.  I set it to remind me I have just turned the stove on to boil a pot of water, that I have a load of laundry going or that I need to leave the house soon.  I’ve learned to use timers in other ways too, to force a time limit on tasks that tend to get out of hand, such as household chores (organizing, purging), reading (magazines) or the ultimate time-sucker, Facebook.

Alarming number of alarms

My cell phone alarm is what gets me to all appointments/commitments on time, as it tells me when to leave.  It goes off at least half a dozen times a day.  Overkill?  Perhaps.  Irritating?  Quite likely.  Necessary? Most certainly. 

It may seem hard to imagine having to rely on external mechanisms to remember the simplest things – pride can certainly get in the way - but the mere act of engaging in one of these strategies actually helps with the encoding process so that eventually I won’t have to be so reliant on them. 

Life post-treatment in one word?  Knackered

Hard to believe that radiation ended 9 months ago and that I’ve been on daily endocrine therapy (Tamoxifen) for 8 months.  Although I am not where I thought I would be, I am managing and taking each day in stride.  I had originally planned to return to work in September, however, the fatigue which had been moderate since the end of radiation worsened over the summer months and is now the worst it’s ever been.  Not the time to throw the demands of work into the mix.  

Fatigue fascinates me.  I used to think I knew exhaustion.  I’m a hard worker and am accustomed to going long stretches, skipping breaks, eating lunch at my desk, working overtime and thinking about work at home.  I knew what fatigue felt like, or at least I thought I did.  Fatigue is not that feeling you have after pushing yourself and exhausting your energy supplies.  It is that feeling of doing absolutely nothing and exhausting your energy supplies.  I used to burn out after overdoing it at my job or at home, but then after a good rest I would wake up ready to go, albeit a little sleepy at times, feeling like I hadn’t quite caught up.  Fatigue knocks you off your feet.  No matter how much rest you get, you still wake up totally wiped.  The only feeling my pre-cancer self ever had that had come close to this was when I’d gotten influenza.  Your strength and stamina are completely gone and simply getting out of bed, getting dressed and going downstairs leaves you winded.  I had no idea what I was in for when I was warned about fatigue.  I’ve had many ups and downs trying to come to terms with it, but I have put a plan in motion and am hopeful that fatigue will soon tire of me.

Food for thought

My first strategy to combat fatigue was to start eating right.  I sensed I was on the right track when I stumbled across an amazing 12-week program entitled “Eating Right”.  Designed and delivered by naturopath Dr. Joel Villeneuve, the program presented a wealth of information on super foods and nutrition during the lecture portion, then moved to the adjacent kitchen for a hands-on cooking workshop with a remarkable nutritionist.  I received over 80 new recipes and have learned how to incorporate super foods in to my diet daily, while eliminating many of the key energy-zapping culprits.  Emphasis on “I have learned how to” vs. “I do this regularly”.  I am in a bit of a funk lately but hope to resume my famous cooking days of the summer which so surprised my family.

Donning fatigues to fight fatigue

Ok, that was just a grab to reel you in – me do boot camp?  Are you nuts?  Only if it’s a fashion forward camp about funky footwear.  No, exercise has to be fun for me or I won’t touch it.  Well I am proud that I have carved out time to incorporate three hours of exercise into my week.  I knew I had to choose things that I enjoyed and where I got the most bang for my buck.  First, I signed up with my 4-yr-old for mother/daughter yoga.  We have an hour of “yoga” (intermingled with just the right dose of cuddling and silliness) first thing Sunday morning, then saunter around in a lovely old neighbourhood and window shop.  In conjunction with my hot flashes it feels much like hot yoga.  Next I rejoined my old hooping class (not your typical hula hooping – think dancing and off-the-body tricks all choreographed to music).  This has been great for my body and mind and I can really fend off lymphedema with the challenging arm manoeuvres.  I am reacquainting myself with the art of belly dance through Breast Cancer Action Ottawa who offer free classes to breast cancer patients.  Today we danced with candles and veils, but not at the same time - can you imagine a group of brain fog ridden women in that scenario?  Disasterous!  And lastly, I’m exercising my fingers, but perhaps more so, my mind, learning to play piano alongside my 6-yr-old.  Not only do these activities help me stay active, they give my kids and me valuable one-on-one time. 

Purging, not splurging

My final strategy is something I been working towards for years: simplifying my life and getting back to basics.  This concept has been burning a hole in me ever since I moved back to Canada, nagging at my conscience like some unseen force.  I always thought it a practical concept, after all, why do we need to produce and consume new things in a world overflowing with perfectly good used things?  Why was I constantly looking for opportunities to purge and why did I feel so uncomfortable and unenthusiastic when making purchases?  Because I had lived with just the bare essentials for a short period of time, and in that time I’d come to realize that life was so much richer with fewer things and more experiences.  Letting go of an abundance of material possessions and all of the hoopla that accompanies them (the marketing, the acquiring, the talking about, the maintenance, the finding space, the organizing, the storing away, the moving and inevitably, the purging) is so unbelievably liberating.  And once I was willing to let go of the need to consume, it occurred to me that I should apply this principle to the rest of my life.  What is the purpose of filling your dance card if you cannot stop to appreciate the splendour of the ballroom?  And where is the enjoyment in the dance if all eyes are on the clock, waiting for it to strike twelve?  Fewer commitments mean more time to enjoy the things that are truly meaningful on a much deeper level.  And this is when our passions take flight. 

So what did the photo of the woman by the sea reveal?

Looking back at that photo I’m reminded of my passion for photography, storytelling, and nature.  I captured that photo during a particularly hard time in my life yet I remember how the joy of being at one with nature, documenting it in photographs and recounting stories about my adventures got me through my personal challenges.  Looking back at how I handled breast cancer, I’m not surprised to see that it was these same three passions that not only kept me afloat, but propelled me to reach new heights.  

Indian classical dancer Ananda Shankar Jayant summed it up best when she said, "I tuned out of cancer and tuned into my dance."  By focusing her energy on her passion, dance became her salvation.   

For me, it was my passion for motherhood that got me through my initial cancer diagnosis.  Caring for and nurturing our new baby was forefront and my medical appointments and diagnostic tests happened in the background.  I will always feel blessed that Imogen came to us precisely when she did.  When treatment began, my other passions – writing, photography and nature - hijacked my mind and led the way.  I distinctly remember when trips to daily radiation treatments felt like a hindrance, keeping me from finishing my blog post.  But then I felt excited to take my camera with me to treatment.  And when brain fog first started to cloud my mind, I took my two oldest kids camping for some clarity.

It is true; breast cancer is but one, torn page in the ever-expanding novel that is my legacy.  If you can take a leap of faith and let your passions be the driving force in your life, they will be the ink that writes your story.  Each day will be a fresh page upon which to record your hopes and dreams, and that one tattered page will fade in the grandeur of your masterpiece.

Incidentally, I ended up scratching the kids’ swim lessons.  We may pick them up in the spring, but if not there will be plenty of opportunities to learn in the summer.  And would you believe, suddenly we have time for the unexpected?  Sometimes it’s a quiet chat on a park bench after an unhurried walk home from school.  Other times it’s an adventure to the mail box in anticipation of finding new junk mail to use in their makeshift post office.  And twice this week, spontaneous dance parties have erupted in our living room, much to Imogen’s enjoyment. 

I want to teach my kids, by example, that how we spend each and every one of our days - that is - living our lives simply, but with passion, is far more meaningful than the sum of all things we may accomplish or acquire.  Quality vs. quantity.  It’s that simple.

 

Blessings Report

Due to sheer volume I have categorized them (oh wait, that’s one of the internal strategies, woo hoo!)

Family blessings

Being home to watch my kids grow up this summer, and to take them to school this fall

Agreeing to let my second child start school, knowing that I still have one baby at home

Promoting literacy by reading with an amazing group of grade 1 students each week

Teaching my son about Harry Potter on a life-size chess board

Discovering that my kids love Chitty Chitty Bang Bang as much as I do

 

Best friends off to school

Perfect intro to chess and Harry Potter

Friend blessings

Holding two of my best friends’ newborns, and remembering when mine were that tiny

Watching two dear high school friends wed one another

Spending 4 glorious hours at the spa with 3 best friends, joined by 2 more for dinner, having 1 fabulous vegan meal and 0 kids to watch!

Health and wellness blessings

One year post-mastectomy today and feeling great about it!

Getting in and out in quite literally, half the time at this year’s mammogram

Re-learning how to process, retain and retrieve information in my brain fog workshop

Experiencing full moon yoga with a dear friend (and several hundred strangers)

Learning how to (successfully) incorporate foods like teff, millet, stevia and seeds into my family’s diet

Toasting the beauty of local, organic food at Harvest Noir

Wonderfully rehabilitative massage therapy at Haley Rehab

Learning the beautiful, inspiring art of hooping with Fire Weaver Sophie Latreille

Hair cuts!  Lots and lots of them, every 5 weeks.  I am embracing this short do.

Stepping outside in the brisk, fall air and not having my eyes tear endlessly – thank you, Taxotere, one year post-chemo and your weirdo side effects are gone

Harvest Noir 2013, a fascinating event

Random blessings

Realising after watching all four seasons back to back, that I am, in fact, a Gleek

Generous cottage owners who gave us a week in their dream cottage

Overheating my electric lawn mower then replacing it with my wonder push mower

Not being struck by lightening whilst camping during Lighteninggeddon2013

Planting clover and having a green back yard with lots of happy bees

Successfully ignoring the little voice in my head telling me to buy a Smart phone

Writing, photography and motherhood

Happy campers

Random acts of kindness blessings

Jennifer Vollrath’s birthday project is to perform a random act of kindness every day for 40 days leading up to her 40^th birthday next month. She is documenting them via hilarious and inspirational posts on Facebook.  So far, my favourite act has been her preparing care packages for the homeless – 120 of them – and recruiting a group of friends and their kids to deliver them downtown.  Her passion is contagious and is inspiring others to start their own projects.  What a blessing you are, Jen!