The Value of a Dollar

With holiday shopping in full swing, it seems that 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 it 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 because 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 stretching, but rather my Brain Dollars that I seem to be running short on.

In late October 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.”[1] At the time of the conference I debated about 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 that you wish or need to complete.   Unfortunately people with brain tumours, especially those on active treatments, 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 less 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 with brain tumours often lose their value at the end of the day making it difficult to save up for something you really want or save your brain dollars to get you through tough economic times.

I have always been an energetic person and pre-cancer there is no doubt I had ample brain dollars in my energy bank.   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 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 that 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 too often I have to limit the activities that I can taken 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 in my cancer diagnosis I have finally found the motivation to make the most of everyday.  For years I would have 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 in 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 into my health every day.  However I know that 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 (consequently why this post took over a month to publish).     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 me blinds and I am left broke even though I haven’t really done anything that day. I have no choice but cancel activities last minute because I don’t have enough brain dollars to even get off the couch.  Although I can tell myself that it’s not my fault, I still feel guilty, lazy and frustrated that I don’t have enough energy and often blame myself that I am not accomplishing more.

It’s rare that I will pass judgement 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 that 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 that causes my frustration but rather when I see or hear their comments I realize that it wasn’t too long ago that I was one of these people.  In that moment of judgement I judge my spending habits when I was energy rich and am disappointed at how much I took my energy bank for granted and how I frivolously 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 investment into my development as a leader that I know has helped me find professional success despite 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 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 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.   When I initially made the investments in high school and university, I could never have predicted the phenomenal return I now have realized however I am proud that I took the time early in life to invest in building up my energy bank.

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 day in, day out.   In university or high school, despite balancing probably over 100+ hours a week of activity, I can rarely 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 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 must have also drained my huge energy banks that I worked so hard to develop in high school and university.  I read the pages and wonder “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 16^th, 2009, almost 3 month 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 doesn’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 that 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 keep sucking me in for one more episode, and when I peeled myself off the couch I would inevitably feel worse than I did before I sat down on the couch.   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 that I had nothing better to do.  I can realize now that 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 that 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 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 goals I had set out.  In that same entry I will 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 would create a detailed action plan on how I would achieve the goals and set specific timelines to keep me accountable.  Following this initial motivating entry, there might be a few entries that follow that 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 goals – 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 is only work.  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, 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 in activities that I might call a “hobby”.  If I think back to those brief periods, I know that I felt better about myself and more over 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 feel I just gave up and convinced myself that I just didn’t have enough brain dollars to accomplish all the goals that I routinely set.  Looking back with my current perspective, I know that I had more than enough brain dollars to achieve everything that I wanted but I wasted all my money in poor investments.

Now I can be somewhat objective and realize that 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 probably realized a similar return with a much smaller investment if I had been smarter on how I spent my brain dollars.

But with TV there is nothing I can show for the amount of energy I invested.  Moreover, I feel that the investment is actually costing me money.   When Jared would encourage me to get a hobby, I would tell him that I didn’t have time.  He would ultimately bring up the amount of time I spent in front of the TV which I would defensively justify that all I was doing was trying to relax.  In the fatigue session I learned that one of the best ways to reduce fatigue is to do things that you really enjoy and to do things where you lose track of time though, like a hobby.  I can see now that pre-cancer my only hobbies were work or TV consequently when I was hit with fatigue recently I had to invest a significant amount of brain dollars trying to figure out what I could do, outside of TV, to lose track of time and ultimately help mitigate my fatigue.    Although spending less time at the office or putting down the remote would probably not have prevented my cancer, had I invested some of pre-cancer brain dollars into developing some interests and hobbies, I might have been able to turn those activities when my fatigue symptoms first started instead of spending the past few weeks trying to figure out what would make a good investment of my limited brain dollars.

I won’t lie when I am fatigued I get really upset and frustrated that I have to accept and live within my new limited brain dollar budget.   Moreover I find myself in a constant mental battle trying to determine if I should spend or save my energy.  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.  Although sometimes TV will get the better of me, now that I am on a strict energy budget I am more aware of the consequences of a bad investment and inevitably if I do misspend I go to bed regretting the way I spent my day and feeling motivated to do a better job tomorrow.  I am proud that I have developed some new hobbies like acting as a life coach to some friends, writing both on my website and in my many journals as well as cooking which Jared also benefits from as dinner is always ready at 6 pm when he gets home.  I have also recently got back in touch with my keener alter ego from high school and university and am volunteering for the Alberta Cancer Foundation as a speaker and fundraiser and have rejoined the Stampede Committee I started volunteering with in November 2008.

Most importantly I am working to adapt to my “new normal” and am trying to implement fatigue fighting strategies to help me make the most of my budget.  Specifically I use a lot of time management tools and I sit down every week to plan my schedule.  However my new normal schedule has lots of space between activities and limits the number of appointments or visits I have on each day so I can relax if I need to.  Additionally through monitoring my expenditures and energy banks, I know that I always feel worse the day after I have spent a lot of time watching TV so I plan my schedule with the goal to keep the TV off between 9 am and 4 pm on weekdays.  In the evenings I become very aware when I stop being entertained by TV and start feeling sick.  When this happens I stop investing in TV and I reinvest into something more productive.  I know that light to moderate exercise will actually earn me some extra credit I can spend later and moreover if I can exercise outside, the fresh air and sunlight always seem to give me some bonus cash.  But I have learned that my previous normal intense workouts are far too expensive for what I can currently afford and that even though I may want to, I can’t push myself at the gym.   I have pulled out old Stephen Covey training and redefined my key life roles 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 so that I can watch for patterns and potentially identify which activities add to my energy bank and which activities deplete my savings in order to help me make smart investments with my new reduced 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 trying to find strategies that allow me to accept that no matter how cautiously I spend my budget some days I am just going to be tired and that there is not much physically I can do to change that.    Luckily I have found that the energy I need to be positive comes pretty cheap consequently I 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 chemo-therapy 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 kickin the crap out 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 that the act of really kickin 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 fatigue and rather take comfort that I am not just being lazy, but rather I am letting my chemo is 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 like a recession, my fatigue too shall also be temporary and that the value of my brain dollars will eventually rebound.  As I finish treatment, my medical team has told me that 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 that my current normal may only be temporary and get excited for the  time when I can reallocate brain dollars from treatment to something else, like a new hobby or back to work.  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 that no matter how many brain dollars I have, they will be invested wisely.

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[1] NCCN Clinical Practice Guidelines in Oncology V2.2007