Survivorship is Not A Phase…

Terri Wingham is the founder and CEO of A Fresh Chapter, a cancer survivor, and someone who believes that we are not defined by the most difficult aspects of our story.

Written by Terri Wingham | October 28, 2011

November 22, 1963; July 21, 1969; July 31, 1997; and September 11, 2011. Do you remember where you were the day you first heard the news? That JFK was assassinated?That Neil Armstrong took his first steps on the moon? That Princess Diana died in a fiery car crash? That suicide bombers boarded planes, filled with unsuspecting passengers, and forever changed both the New York skyline and the North American psyche?

Early that morning, I pulled my coat a little tighter and cursed the first frost of the season as I attacked the windshield of my 1994 Ford Escort with a scraper I found buried in my trunk. The engine whined as I turned it over and I ignored the squeaky clutch as I navigated through the still dark streets. With the Top 40 station of the Rocky Mountains blaring through my speakers, I gulped my coffee and cursed my split shift. What hotelier came up with the idea of making people work from 8am – 12pm and then having to come back to work again from 4-8pm? In that moment, I thought my crummy work schedule would be the day’s biggest problem.

Then, the song ended and the DJ’s voice came on – high pitched, breathy, and confused – I heard words like “planes”, “twin towers”, “oh my god”, and “this can’t be real”. I twisted the dial to the right, hoping I had misheard her.

Moments later, a piece of the September 11th nightmare played out right in front of me. Even in a sleepy mountain town in Canada, the terror found us. A throng of American guests gathered around the Concierge Desk of the Banff Springs Hotel and a wall of sound hit me as people sobbed hysterically, yelled at each other in their panic for information, and asked me questions I couldn’t answer.  Questions like, “Why can’t I get through to anyone on the phone?”; “How many people have died?” and hardest of all, “Why did this happen?”

Ten years later, I can still see the animalistic desperation in a woman’s eyes, as she raked her hands through her matted morning hair. “My son is a pilot for United; I need to know whether he was on that flight. But I can’t get through on my cell phone. Can you please try to call for me?” Her wrist shook as she held out a slip of paper with a phone number scrawled across its surface. I could do nothing but nod and punch in the numbers even though I knew would get the same  – “I’m sorry; all circuits are busy. Please try your call again” -message I had heard all morning. The onslaught of white faced, shaky voiced guests continued to arrive at my desk all day. I swallowed my own fears and drifted into a state of numbness so I would have the capacity to hold onto their stories and ease their rising panic.

For me, October 27, 2009, felt eerily familiar to those moments of collective shock, fear, and disbelief. In some ways, it was my personal September 11th. The day I learned that a group of terrorist cancer cells had multiplied deep inside my left breast in an undercover attempt to take my life. When I first heard the words, “you have cancer”, the metallic taste of shock flooded across my tongue. All ration and decision making capability left me as I sat on a couch in a convention centre, immobilized by fear. Fear of disease, disfigurement, and even fear of death.

In order to have the strength to get up off the couch, I had to fold a cape of denial around my shoulders. If I could just pretend I didn’t have cancer, maybe I could get back to the girl I was on October 26, 2009.

When denial didn’t stop the onslaught of doctor’s appointments and tough decisions, I opted instead for anger and silently raged at the universe. I didn’t want to wear pink, or call a stranger who offered to talk to me about her breast cancer experience 20 years ago, or see the pity in the eyes of my acquaintances and medical practicioners after they heard the news. “But you are SO young. I can’t believe you have breast cancer.”

“No shit Sherlock” I wanted to scream. “But, just because YOU can’t believe it, doesn’t mean it’s not happening to ME. And no, I don’t want to hear about your best friend’s mother’s cousin who also had breast cancer and how that makes you think you understand EXACTLY how I feel.”

As the anger finally ebbed, numbness took over. I thought if I could just put my head down and take one step after another through the surgeries, the baldness, and the desire to vomit, I would arrive on the other side and normal life could resume again. But, no one told me about the identity crisis that would come with my cancer “unhappy meal”. No one mentioned the risk that pre-cancer Terri would die on October 27, 2009 and that I would be stuck with post-cancer Terri FOREVER.

Now, if you have read A Fresh Chapter for awhile, you know about the silver lining in my cancer cloud. You know about my new found passion for helping other people move through the sludge of treatment and create their own fresh chapters. You know I am busy taking risks, living in the moment, and meeting new friends who continue to shed light on all of the new possibilities for my future.

Speaking of clouds, one of these new friends came by way of a chance #Follow Friday on Twitter. Sweet Serendipity put Gary Thompson of @CLOUDHealth and I in the same 140 character tweet. He sent me his powerful TED Talk and I sent him the link to My Big Hairy Audacious Dream. We skyped and within minutes were having an authentic conversation about cancer and our stories. This past week, we shared even more stories over fresh Mexican food in Austin, and then he took me to meet some fantsastic people at LIVESTRONG. As soon as we stepped into the LIVESTRONG head office and I read the Manifesto on the wall, I felt like I had come home:

We believe in life.
Your life.
We believe in living every minute of it with every ounce of your being.
And that you must not let cancer take control of it.
We believe in energy: channeled and fierce.
We believe in focus: getting smart and living strong.
Unity is strength. Knowledge is power. Attitude is everything.
This is LIVESTRONG.

We kick in the moment you’re diagnosed.
We help you accept the tears. Acknowledge the rage.
We believe in your right to live without pain.
We believe in information. Not pity.
And in straight, open talk about cancer.
With husbands, wives and partners. With kids, friends and neighbors. Your healthcare team. And the people you live with, work with, cry and laugh with.
This is no time to pull punches. 
You’re in the fight of your life.

We’re about the hard stuff.
Like finding the nerve to ask for a second opinion.
And a third, or a fourth, if that’s what it takes.
We’re about preventing cancer. Finding it early. Getting smart about clinical trials.
And if it comes to it, being in control of how your life ends.
It’s your life. You will have it your way.

We’re about the practical stuff.
Planning for surviving. Banking your sperm. Preserving your fertility. Organizing your finances. Dealing with hospitals, specialists, insurance companies and employers.
It’s knowing your rights.
It’s your life.
Take no prisoners.

We’re about the fight.
We’re your advocate before policymakers. Your champion within the healthcare system. Your sponsor in the research labs.
And we know the fight never ends.
Cancer may leave your body, but it never leaves your life.
This is LIVESTRONG.
Founded and inspired by Lance Armstrong, one of the toughest cancer survivors on the planet.

Later that night, tears gathered in my eyes as I watched the LIVESTRONG Manifesto Video. Some of my favourite lines? “We help you accept the tears. Acknowledge the rage…We believe in information, not pity…And we know the fight never ends…Cancer may leave your body, but it never leaves your life.”

For anyone who has had a doctor change your life with just three words, you know survivorship begins the day you get diagnosed and lasts forever. We have no control over whether life changing circumstances like cancer impact our lives, but we have the choice to LIVESTRONG with every ounce of life we have left. We have the ability to make healthy choices. To dream big dreams. To acknowledge our emotions and to make sure cancer remains only part of our history.

It’s so important to remember that we all have a story and our stories are filled with both darkness and light. Although breast cancer is part of my story, my story is about so much more than breast cancer.

Thank you LIVESTRONG for the work you do in helping people to LIVE STRONG.

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Comments (8)
  • Sherrie • October 29, 2011

    You continue to inspire me on my own survivor’s journey, Miss Terri. As you said, so eloquently, our stories are filled with both darkness and lightness. Blessings for wellness and prosperity to you.

  • Terri Wingham • October 31, 2011

    Sherrie,
    Right back at you! Thanks for your ongoing support. It means the world to me. Big NYC hugs to you!
    Terri

  • LIVESTRONG • October 29, 2011

    We believe in life. Your life… We really do. Please know we are here for people in treatment, out of treatment, family and friends of ALL ages. 1-855-220-7777 or online http://www.LIVESTRONG.org/gethelp. Great post!

  • Terri Wingham • October 31, 2011

    Brooke,
    Thank you so much for your comment. I am so happy to have connected with you, even though we didn’t get a chance to meet last Tuesday when I was at LIVESTRONG. I LOVE what LIVESTRONG represents and I look forward to sharing your phone number and website with anyone I meet who is looking for a little support, at any stage, of their cancer journey.
    Have a great week!
    Terri

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