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What Doesn’t Kill You – A Story From Call-on Congress

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by Bunny Terry

They say (the pundits, singers and entertainers) that what doesn’t kill you makes you stronger. I’m pretty sure they were referring to cancer and its survivors. Songs with that phrase have been used as background music for several videos of cancer patients getting stronger in the face of this ever-present and devastating disease. The phrase definitely hits home for me.

My Story

I was diagnosed with stage IV colon cancer in November 2012. After my diagnosis, I contacted every person I knew who believed in prayer. I asked for everyone’s best thoughts. I did everything my oncologist recommended and then when he suggested a visit to MD Anderson in Houston, I said, “Yes, definitely, I’m in.”

What doesn’t kill us makes us stronger. I hated cancer. I hated how it made me feel vulnerable in ways that three botched marriages and raising two amazing kids single-handedly never had.

I hated cancer

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I hated my port sticking up under the thin skin on my chest. I hated going to chemo every other week, sweating and marginally nauseous, my nose running in ways it never had, even in the worst allergy seasons. My eyes watered so much I had to give up wearing my contacts.

I hated the weirdness of the medications – steroids that made me hungry and only seemed to make me puffy and sleepless. Avastin gave me a tendency toward bloody noses three or four times a day, chemo fatigued me so much that getting off the couch to go to the bathroom felt impossible.

There were lots of side effects to my chemo, including my addiction to the Kardashians on TV simply because I couldn’t concentrate on even the simplest magazine or book. My brain disappeared. My life went on hold. Cancer was kicking my ass.

Fortunately, my chemo worked and the tumors in my colon and liver started to shrink. I then discovered I was a candidate for surgery. I had surg

ery at MD Anderson, came home to Santa Fe for several more rounds of chemo, and then on June 23, 2013 I was cut loose. I had a CT scan in August 2013 and the radiologist who read it marked “cancer free” in the margins.  I had my port removed. My thinning hair started to thicken. I was on the mend.

Fearing Recurrence and Looking for Support

So, yeah, cancer didn’t kill me. But it left me weak and very fearful of a recurrence. I was endlessly vigilant, and if the truth be told, maybe a bit of a hypochondriac. I was hyper-aware of my body. Is that an ache in my side? Do I have a new tumor? Bad cough – has it come back and settled in my lungs? Exhausted after a trip – am I bleeding internally again?

Despite my fears, I slowly started to put my life back together again and looked for cancer survivor groups online. The first one I stumbled on was Fight Colorectal Cancer and its Facebook page. Not the most glamorous of organization names, but I liked that it seemed so honest, so forthright and so true. It wasn’t silly.  It was just something we all needed to do. We need to fight colorectal cancer. Now.

I started looking into the group and scrolled through photos of the Call-on Congress advocates and thought, “What fun those people in their bright blue t-shirts seem to be having!” I followed their page and when they posted about scholarship applications for Call-on Congress 2014, I decided to give it a shot. I didn’t expect to be chosen. Heck, I was still a newbie in “CancerLand.” But I was very politically active in several other venues and figured, why not be an advocate in the venue that I cared about most – the one where we work to eradicate cancer?

Becoming an Advocate

13433250305_1718fb22dd_zI applied for the scholarship and soon received an email from Emily White saying I was chosen to serve as an advocate. I skipped through the house (no more lying on the couch for this survivor!) and called the people who would care – my kids, my boyfriend, my parents, my best friends.

On March 15, I made my way to the Westin in Alexandria to meet new friends and Fight CRC colleagues. I had painted a very dreamy picture of how it would go – everyone would be amazed at my diagnosis and subsequent good health. They would all want to be my new best friend. (Doesn’t everyone?) I’d wow them with my political acumen and my humor, and then at the Celebration Dinner after our day on the Hill, they’d find my dancing skills out of this world.

Or something like that.

But – my dreamy picture didn’t exactly come true as I had thought. At least not exactly.

Joining the Fray to Join the Fight

What I found on the first night was that I was nothing special, except in the way that all cancer survivors are something special. What I found was that despite my cancer diagnosis (or perhaps because of it), I was someone who needed to join the fray and fight for everyone else who might face this disease.

I met people who had their colons removed at age 17. I met a spiky red-headed warrior who hugged me in the bathroom and told me I looked great – and then showed me her bags pressed against her abdomen – not one, but two.

I met a mother/daughter team who cried telling their story but then danced all night on Tuesday night. I met a fascinating guy who’s riding a donated Ducati across the country taking photos of survivors who were diagnosed before 50. I met a woman who’s fighting for her husband and her kids because Lynch Syndrome runs in his family.

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I met several people who are on chemo for the rest of their lives, one whose nine year-old son told me he doesn’t play sports because “When your mom has cancer, you really get to help out a lot.” He said this without the slightest bit of rancor or regret. He was a fighter in his own way, and happy to be one.

In other words, I met the real survivors and the real fighters. And because they were so strong, funny, brave and inspiring – I stopped being scared. I stopped checking the ache in my side and started thinking about how to do this for the rest of my life. I started calculating how often I could contact my congressional delegation about funding for research without being seen as a pain in the ass. I also started calculating how much I needed to save each month so that I could come back to Call-on Congress next year.

Finding Power in Advocacy

This is a powerful group. Before I joined them, I didn’t know that colorectal cancer is the NUMBER TWO cause of cancer deaths in the U.S.  Number TWO, folks! And it’s the most preventable.

I didn’t realize that advocacy meant storming Capitol Hill, writing letters to your members of Congress and posting on Facebook so that your friends see your posts about scans. All those activities will make a difference in the death rate. Knowing about risk factors, FAP and Lynch Syndrome – these are the action items that we can all take to heart to change our world.

The experience was beyond the words I have to describe it, and walking into my senators’ offices with the knowledge and practical skills I gained was a kind of power I hadn’t known previously. My disease and my knowledge made me the perfect candidate for this work. And I know I was heard.

We’re all fighting to have 80% of Americans ages 50 and older screened by 2018. Every eligible adult who is screened during early stages equals another life NOT lost to colorectal cancer.

Call-on Congress Changed My Life

Fight Colorectal Cancer’s Call-on Congress changed my life. It took me from fear to power, and it made me aware that our cancer neither defeats nor defines us. What it does is gives us the story and the words to inspire change for the rest of the world.

God gave me a great gift in my recovery. “To whom much is given, much is required,” to paraphrase Luke 12:48. I plan to spend the rest of my life fighting to eradicate colorectal cancer along with my new warrior friends, their kids and their families.

And you, I hope.

More…

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