The 1,095th Day: Grace Through Uncertainty

 

It has been three years since I learned I had cancer.  Over 1,000 days.  Those days have been filled with love and joy.  But many of them have also been filled with an intense, self-directed focus on eradicating cancer from my body and then living with the uncertainty of whether or not it will present itself again to me.  Somewhere.  Else.  In.  My.  Body.

I am told that studies have shown that living a happy, productive, and positive life makes a difference in the rate of recurrence.   This may be an old wives tale.  I hope not.  If it's true, I think I would be sailing through to being cured.

The hardest thing is the not knowing.  The current protocol for my type of cancer, following the intense treatment I received in 2011, is a "wait and see" approach.  There are no routine scans or definitive tests that assess whether or not I have a recurrence.  The doctors feel that the rates of false positives are too high and cause unnecessary stress on the patient.    And, that if a recurrence does occur, finding out sooner rather than later doesn't have an impact on the survival rate or lifespan of that patient. 

I just have to walk around and live my life every day hoping that I don't feel a sharp pain in my lungs or have a seizure due to metastasis in my brain.

My oncologist keeps telling me I'll "be fine," but when she shows me the statistics, my confidence that I have truly "kicked" cancer wanes.   The recurrence rate for my type of cancer (triple negative) is shown in the chart below by the solid line.  The first thing you'll note is that, at least in the first eight years, the solid line (my cancer) is above the dotted line (recurrence rates for other types of breast cancer).  We can conclude then that my cancer is more aggressive in terms of recurrence and, subsequently, more deadly.  This is why my doctors took such extreme measures with my treatment.

 

What else does the chart above show us?  It shows that my recurrence risk for these last three years has hovered between 10 and 15%: a rate that is definitely higher than I'm comfortable with.  However, after the third year, note the steep decline of the solid black line.   At the five year mark, the line is roughly 1-2%.  And, at eight years, the recurrence rate is virtually zero.

So, a milestone has been reached today (or technically on December 10, the date of my first surgery to remove the cancer, which is how this timeline is measured).  Statistically, my risk for recurrence will start to drop off each day that goes by.  Each month.  Each year.  

I never thought I'd be so excited about the aging process.

On Grace

There is a certain grace that comes with living with this uncertainty.  It did not come easily, or willingly.  After my treatment ended, I was a basket case, obsessed with the prospect that I would continue to draw the short straw.  I had been so lucky in life up to that point: my family, my education, my career.  Something had to give.  

But, slowly, the days pass.  One cannot live with that intense fear day-in and day-out.  Like it or not, everyday life creeps back in and, eventually, rules your mind. The hair grows back.  The surgery wounds heal.  And those days from treatment sink further and further into the fog of memory.

I have submitted to the uncertainty now.  That is the grace.  I am not dominated by fear.  I live my life fully, with joy and happiness and, most importantly, with an eye to the future.

To life, love, and happiness.

The 730th Day

Today marks the two year anniversary of my breast cancer diagnosis.  Oh, what a two years it has been.

This past year, I celebrated my own wedding, a welcome distraction from the clock ticking on the window for recurrence.  Every day that goes by, every minute that passes where I don't feel a pain in my liver, in my ribs, in my back, is one more minute without a recurrence.  Is one more minute closer to the possibility that I'll die from something other than breast cancer -- and much, much later in my life.

Joe and I have dreams to conquer.  A family to start.  More happy memories to create.  The idea that these won't happen, the devil on my shoulder telling me that there is still a chance that these things won't be able to happen because my cancer will return, is heartbreaking. Too much to bear.  I fervently believe we will move beyond this all.

Joe listens and supports me through my episodes of hypochondria, including waiting for the results of three MRI tests over the last year "just in case" that fleeting pain in my side, in my back, the ringing in my ear, was actually something beyond routine pangs (fortunately, all of these MRIs have been negative).

Friends and family typically ask me about my cancer recovery in the following way, "So, everything's all good now, right?".  They don't know what else to say.  And I understand that.  It's also a function of how we as humans work.  We want definitive answers.  No uncertainty.  Either good or bad.  No grey areas.

It's funny to me now: I spent the majority of my time in treatment trying to look healthy.  $2,000 on a human hair wig. Hours spent drawing eyebrows; painting every last eyelash with black mascara.  Once I had my  post-chemo curly hair straightened and extensions put in, it was like nothing ever happened to me. At least from the outside.

But, it did happen.  And it's easy to forget, to want to push it back into the back corners of my memory.  But it's still there.  Lurking.

The biggest reminder to me of the fragility of our lives came when my 35 year old friend Elyse passed away from cancer the week before my wedding.  Elyse and her husband, David, had sent back their RSVP card with a positive response (fish x 2, looking forward to it!) just weeks prior to her quick, steep decline into recurrence.  I never got a chance to say goodbye. She moved swiftly from a seizure, into the subsequent discovery of 19 brain lesions, into hospice and, eventually one day left, then...she was gone.  I still can't believe how quickly it progressed.

The unfairness of it all is a constant source of stress for me.   And not just about me, about everyone I meet in this situation.  Elyse was so young. I was diagnosed at Stage II, but I got lucky.  I could have just as easily not discovered my lump until it was too late -- Stage IV, like Elyse.  Again, I believe that surfing saved my life here.  If it weren't for my surf trip to Nicaragua two years ago, I wouldn't have even been feeling around my pectoral muscles, which is how I discovered my cancer.

Now onto my future.  Without recurrence.

An unexamined life is not worth living.  I will forever wonder what the right balance is for me between exploration, physical and spiritual enjoyment, intellectual stimulation, artistic endeavors, and the simple appreciation of life and all the small moments that are stitched together to make it.

Life is short.  This is now a time to focus on my future.  On what the right path for me is going forward from this point onward.  On striking the right balance.  I don't know what the right answer is -- or even if there is one.  But that's good, since part of this discovery is simply just engaging in the process.  I do know, however, that I will be spending my future with the right person who will help me enjoy it and savor the good times as much as possible.  And, eventually, I will figure it all out.  Or not. But I'll be better for having gone through the process.

Here's to another year.  I look forward to almost forgetting this significance of November 19 (again) next year.

To life, love, and happiness.