Community//

Survivorship: Part 2

The Extent of Pain; A Symptom of Something Much Greater

What can we all learn from getting the rug ripped out from underneath us? 

Whether it’s COVID-19, cancer, or something else there are undeniable similarities in the shock of an uncontrollable situation, where you are forced into survival mode.  Cancer doesn’t discriminate, and neither does COVID-19, which regardless of the severity, leaves everyone collectively experiencing some degree of WTF?

The rollercoaster of constant changes in stay at home orders, stimulus packages, bailouts, forgivable loans, deferred payments and freebies, are all the necessary “treatments” used to address the “cancer” today.  Being under the wing of all this attention and care is the safest we will ever feel, and the most we will ever get.  Because we are in it right now, it feels real right now, but the reality of what this is, and how it has impacted us all won’t be apparent for days, months or maybe even years after the quarantine has ended. 

The security and innocence of time where we once felt untouchable, or beyond the reach of something cataclysmal, has instantly vanished, and the safety net of isolation will soon give way to a sea of new uncertainties threatening to take us down. In a very short time, the memories of what has been the last few months will begin to fade, as people go back to their lives and their own problems. The help will subside, and those that continue to struggle will be left to fend for themselves. 

I’ll never forget waking up only days after my last treatment, and catching a glimpse of myself as I walked past the bathroom mirror. The reflection of my war-torn body, bald head and sunken face wrapped in a human shell I no longer recognized, while the laughter of my children outside the door reminded me I am still alive.  In a moment’s notice I was on my own, ill equipped and left to my own devices, but I couldn’t help but wonder when I would get my life back?

“Where do I stand now having been where I’ve been? How will I spend the time I have left here on this earth? Will those around me understand this change, and will they have changed too? Will they have compassion?  Will they help?  The daily questions are never ending. I have no more answers than I did before this began, just a new perspective. This perspective holds so much beauty; a fresh start, a new outlook, a second chance, but can at times feel so heavy with uncertainty. It’s brought about so much change, so quickly,  I feel like I need to hit the brakes, back up and pick up the pieces I’ve left behind. It can be such a full, yet lonely place. A place nobody ever chooses willingly to go, but so many people are taken against their will. This “place” has shown me more laughter, pain, happiness, sadness, loss, gain, in a few short months, than I had seen in my 34 years. Will this make me stronger, wiser, more resilient to the next life blow? Will I walk the path I am supposed to walk? How do I not let this define me? What is the legacy I will be able to leave? Oh the questions I have,and the places I will go!” [Entry from blog April 2010]

Life beyond a stage IV cancer diagnosis is no vacation.  The hope of relief is overshadowed by the constant uncertainty of it’s vengeance.  The illusions of peace are dismissed by anxiety and fear.  And the promises of freedom you expect to experience in the days you no longer have to face the ugliness, are buried beneath the struggles of the physical, emotional and financial toxicity that continue.  Simple coughs turned into overblown tests, and continuous symptoms overlooked as overblown paranoia.   No one but you understands the real loss, the depth of loneliness, or the extent of the pain endured as a young mother, wife and woman.   Oncologists who believed their work was done, and primary care physicians with little experience to deal with the aftermath,I was left on the edge of a cliff with a gap so great, I couldn’t decide whether I should fight to live or just not to die.

If I, or the cancer community had known ten years ago what we do today about survivorship and the impact and pitfalls of “living” a life after cancer, many of our downstream experiences wouldn’t have been so challenging, lonely, and filled with the fear and frustration that no matter how hard we tried, we would never stop living in the shadow of the disease. 

Moving forward after this quarantine there will be a lot of unknowns.  There will be good days and there will be bad days.   The action steps will vary, and the degree of pain and suffering will vary too.  It won’t be easy.  It won’t be perfect. And it won’t be without fear, frustration and dark nights, but I want you to hear we have a choice in our future, in our future as a nation. 

Whether you choose to let “this cancer” define you, or use this pandemic as an opportunity to serve, grow and thrive,  isn’t up to the politicians, financial analysts or your boss, just like the outcome of a patient’s life after cancer isn’t up to the oncologist.  It is up to you.  It is  up to me.  And it is up to each and every one of us to decide the perspective we will choose to have, or not have, and the choices we decide to make to do something about it, or let someone else do it for us. 

This slowed pace has exposed the gap, and opened the door for you to not only step out onto a temporary path to get where you want to go, but it’s given you the opportunity to build a sustainable foundation for a meaningful future.  The choices you will make in these seemingly insignificant moments today, will be the real authority over the course, direction and trajectory of your life tomorrow.

The COVID-19 pandemic and the survivorship of our nation doesn’t have to be left up to fate, or us living in the shadow of this for the next hundred years.  This forced reset is the single biggest opportunity we have ever had as individuals, as a nation and as a global community to change the things we told ourselves we didn’t have the time, resources, energy, or know-how to do anything about before now. 

Today we have the choice to distinguish ourselves as individuals and as a country. To choose a new perspective, and a new way.  To make the decision to forge ahead with the awareness and the intention to create a GOLD STANDARD for Survivorship.  One that unites the commonality and shared needs, values, ideas, interests and perceptions of humanity, and creates a win-win situation for all, to move above and beyond the COVID-19 pandemic, and thrive.

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