Moving beyond cancer, a new stage of waiting

By Carol Fragale Brill

Recently, I entered a writing contest with a deadline five months away. After tapping send, it hit me. For the first time since hearing four terrifying words - it is uterine cancer - I made a plan for the future without first asking myself, Will I be healthy then? Will I be alive?

My rational self knows there have been countless advances in cancer treatment in the 50 years since my dad died of brain cancer when I was 12. Cancer is not the six-months-to-live death sentence it was back then, and many cancers are completely curable.

And yet.

Hearing the doctor's verdict, my rational self went AWOL. My first anguished thought was, "Is this how I am going to die?"

I longed to turn back the clock and not know. Crazy-making thoughts engulfed me.

Should I donate my clothes, sort through pictures, put the house up for sale and downsize so my husband, Jim, wouldn't be forced to weed through a lifetime of stuff all alone?

Admiring a sundress in a shop window, I wondered, will I live long enough to wear it?

I started using the "good" place mats instead of the everyday ones, chiding myself, "What am I saving them for?"

My emotions whirled minute to minute or hour to hour - denial, loneliness, anger, acceptance, hope.

And, always, terror lurked just below the surface.

I finally shared my mania with Jim. He reminded me that we weren't there yet. I was getting ahead of myself, drowning in an ocean of murky cancer gloom.

Entering that writing contest without fearing the future may not seem like much. To me, it felt absolutely huge.

My uterine cancer started with minor "spotting" that would have been easy to ignore. Confident it was nothing, I made a gynecologist appointment. One test led to another, and then came the waiting for results - the frightening, interminable waiting. Through scans, biopsies, surgery, tissue and lymph node samples, staging, I clung to assurances from cancer survivors that waiting is the hardest part - that it gets easier once you know the treatment plan.

I assumed that hearing I had the "Big C" meant I had heard the worst.

After surgery, the words aggressive cancer and spread outside your uterus and treated as stage 4 nearly did me in.

Then they dropped the second dreaded C.

Chemo.

The treatment plan required four months of chemo and six weeks of radiation.

Amazingly, my cancer-surviving friends were right. Knowing the plan actually was better than the fretful days and sleepless nights of imagining the worst. A fragile acceptance started to nudge my gloom.

Chemo was not the nightmare I expected. I didn't love the steroid-induced sleepless nights or hours tethered to an IV dripping poison into the port imbedded in my chest. And chemo fogged my brain, making thinking hard and concentrating impossible. I wept in the shower when tufts of my hair circled the drain.

On the upside, there was no dreaded nausea and many more good days than bad. I shared quality time with Jim, family, and friends, took walks, read, chilled on the beach, and binge-watched movies - a pastime I hadn't indulged in for years.

I expected to be ecstatic when chemo and radiation ended. Instead, I felt vulnerable and afraid.

Treatment meant aggressively fighting back. Posttreatment, my body was left to face down cancer on its own.

When I shared my recurring fears, my radiation oncologist reassured me that after months of being cut, poisoned, and burned, I earned the right to allow my body, mind, and spirit all the time they needed to heal.

Cancer leaves behind unwelcome mementos. There's the lingering germ phobia; the chest port that looks like an on/off button; the more-irritable-than-before irritable colon; numbness that comes and goes in my toes. Given that I'm childless, there's the infuriating irony that my unproductive uterus is the body part that betrayed me.

Moving beyond cancer is a new stage of waiting. I wish my doctors could guarantee that I'm cured. The best they can do is reaffirm that they see no current evidence of cancer.

I asked several cancer survivors, "When will cancer be such a tiny speck in my rearview mirror that I won't dread follow-up exams or cancer's return?"

Their unanimous response: Never. It's not the answer I crave, but it reminds me that post-cancer anxiety is normal.

I have a new respect for the legions trekking toward their fifth cancer-free anniversary. It never occurred to me before that, step by brave step, they march toward that milestone with the fear of cancer's return nipping at their heels.

Cancer has meant surreal numbness and stark realities - hope and transitions.

If I let it, cancer and fear can hijack every inch of space in my brain.

One day at a time, I'm determined not to let it.

Carol Fragale Brill is the author of "Cape Maybe." She blogs at knowhopeknowgrowth.blogspot.com.