Everything Changed

By Donna Trussell

[First published September 2, 2002 in The Kansas City Star]

At first I wanted to say: No, that can’t be. I’m not a cancer person. Cancer is for other people, like getting a tattoo or eating squid. Fine for them, but not my style.

And this wasn’t just any cancer.

I first noticed vague symptoms two months before, but I attributed them to menopause. After all, I was 47 years old.

I’d get severe bloating for a day — so painful I felt like sticking an ice pick in my stomach to let the gas out — and then it would subside. I’d get constipated. And I was tired.

I bought herbal teas and talked to my doctor about taking estrogen.

My final symptom was a low-grade fever, but that came along later, just before I doubled over with abdominal pain on a sunny August afternoon.

My doctor’s nurse ordered me to the emergency room. I argued. I knew that bad things happen in emergency rooms. The nurse convinced me to go, and in so doing may have saved my life.

The emergency room doctor thought I might have diverticulitis. He mentioned the possibility of an emergency colostomy.

“No!” I yelled. “That’s not the way I do things. I do research. I get second opinions.”

“You may have no choice,” he said grimly.

Within hours I was given a blood test for CA-125, a protein associated with ovarian cancer. An ultrasound and a CT scan revealed a mass the size of a small grapefruit. My white cell count was high. The doctors began pumping me full of antibiotics.

Two days later, on my birthday, I was still in the hospital when I first heard the words “ovarian cancer.” Suddenly I wanted to go back to the colostomy scenario. Now it didn’t sound so bad.

After I left the hospital, I was to be watched. If the mass got smaller, we’d know it wasn’t cancer.

But the mass didn’t shrink. My CA-125 was still elevated. According to my family doctor and a gynecologist, the mass had to go.

At first I thought the gynecologist would do the surgery, and an oncologist would stand by, That plan morphed into the gynecologist doing the surgery, with the oncologist actually present and assisting. Then things shifted yet again: The oncologist would do the surgery, and the gynecologist would assist.

The gynecologic oncologist was Verda Hunter. Her name had recently been in the news. Verda Hunter had blown the whistle on pharmacist Robert Courtney for diluting chemotherapy drugs.

I wanted nothing to do with an oncologist. An oncologist might drum up cancer cells just to increase business, right? I especially didn’t want to see an oncologist named Verda. What kind of woman would go into a field where you watch people die? A woman named Verda, that’s who.

I pictured Edith Prickley, an SCTV character who sports a leopard-skin pillbox hat and rhinestone-studded cat-eye glasses. Verda. Well, let’s see this Verda try and railroad me into surgery.

On Verda’s door was the word “oncology.” I winced.

I had to fill out a form, but saw no pen. The receptionist smiled and pointed to a cup of silk flowers. “Pull one out,” she said. The flowers were pens. “We haven’t lost a single pen since we got those,” she said, full of cheer.

Verda. Fake-flower pens. I didn’t like Cancer World. I wanted to go home.

Verda didn’t wear glasses or a leopard-skin hat. In fact, she was quite beautiful. She didn’t crack jokes. What really sold me on Verda, though, was the fact that she didn’t want to do surgery.

“Your ovaries feel normal size for a woman your age. You’re a small woman, and if there was a mass, I would feel it. Let’s do another CA-125. I’ll bet it’s gone down,” she said.

Dr. Hunter was my kind of gal. Overjoyed, I left a message for my family doctor: No mass! It was all one big mistake.

A few days later, though, Dr. Hunter’s nurse called to schedule surgery. Dr. Hunter saw the CT scan and changed her mind.

“But my symptoms are gone,” I said. But, but, but…

“Let me read you the radiologist report,” the nurse said. It was brutal. Radiologists don’t mince words. My fantasy of a benign mass dissipated.

My surgery was scheduled in three weeks, at the end of September. I had one more chance of reprieve: another ultrasound. Optimism faded when the technician skipped part of the exam because the mass was so large.

“If they can’t see this, they’re blind,” she said.

The next morning — Sept. 11, 2001 — I was watching the twin towers fall on TV when the phone rang.

It was Dr. Hunter’s nurse. “How about surgery tomorrow?” I knew better than to argue.

It began to seem like a nightmare — an exhausted, unshaven, melancholy Peter Jennings, footage of a jet crashing into the tower repeating over and over, and the immediate prospect of the most ominous surgery of my life.

If ever I felt like the world was ending, that was the day.

Just before entering the operating room I told the anesthesiologist about a news report I’d seen: A woman woke up during surgery unable to move or speak.

“Make sure you give me enough so that I don’t wake up,” I said.

“You bet,” he replied in his best Wilford Brimley.

“But don’t give me so much that I don’t wake up at all. I want to wake up.”

He smiled. “That’s the idea,” he said, patting my hand.

Oh, they were kind. All of them. My last sight before succumbing to the anesthesia drugs was a surgical-masked face standing over me. I thought I saw pity in the man’s brown eyes.

The next thing I knew a voice was saying, “This is Dr. Hunter. It’s mostly good.”

She was glowing with happiness, in fact, when she talked to my husband. She thought the tumor looked precancerous or early stage. I might be able to get away with an abbreviated course of chemotherapy or even no chemo at all. We’d have to wait on the pathology report to be sure.

It was a decidedly more subdued Dr. Hunter who came to my bedside two days later. A biopsy revealed microscopic cancer cells beyond the tumor and ovaries.

I was Stage III. Advanced.

“What are my chances?” I asked.

“I’ll tell you,” Dr. Hunter said, “but I don’t want you focusing on that. The five-year survival rate for stage 3 is 30 percent.”

With all the advances in oncology, one would expect to hear 70 or 80 percent. But for me, the odds were that I would die within five years. I moaned in despair.

“People think of a skull and crossbones when they think of cancer, but I want you to think of this disease as manageable,” Dr. Hunter said. “If diabetics didn’t get their insulin, they’d be dead in a week.”

She may as well have been talking to the moon.

It was only later, when I connected with other ovarian cancer survivors whose doctors had all but pronounced them dead, that I discovered how fortunate I was. I had a warrior doctor.

In the months that followed I also discovered the answer to my question: What kind of people go into a field where they watch people die? Not misanthropes, as I once suspected, but heroes. People with more courage than I’ll ever have.

In Dr. Hunter’s office are makeshift signs: “Never give up on anyone. Miracles happen every day.” A year ago such piety would have made me squirm, but things take on a new meaning once you have cancer. Dr. Hunter and her staff were not going to hand me over to the coroner without a fierce fight.

For me, chemotherapy was not the ogre of popular mythology, thanks to drugs that alleviate side effects. During my six months of treatment, I felt queasy only a few days, and anemia was short-lived. However, I did lose all my hair, including my eyebrows and eyelashes.

A friend wanted to take me wig shopping. I told her that a local charity gives away wigs.

“But if they’re free, you know they’ll all be Millie wigs,” she said.

Millie wigs?

“Millie, the neighbor in ‘The Dick Van Dyke Show.’ ”

Oh yes, the brunette with the short, tight curls. I found out my friend was right. I resolved to wear hats. Once my eyebrows and eyelashes were gone, who was I kidding? Some women pencil in eyebrows, but I preferred the barefaced cancer-patient look to the clownish makeup of a 1930s movie star.

I learned to forgive well-meaning friends who offered dubious comfort. One friend said my cancer was an opportunity to “grow spiritually.” I left unsaid the suggestion that came immediately to mind — that she could have a similar opportunity by jumping off a balcony.

An oncology nurse said she could “get hit by a bus tomorrow.” I later discovered that the bus comment is the No. 1 annoying response to a cancer diagnosis.

One ovarian cancer patient told her neighbor that the hit-by-a-bus scenario isn’t a good analogy. “It’s too random. A more useful analogy would be: You wake up in a strange place and you’re told you were in a car crash. It was a 10-car pileup. Two or three of you will survive, but we don’t know who, and those two or three survivors will undergo debilitating treatments and suffer side effects the rest of their lives.” Now, she told her neighbor, you have some idea of how I feel.

My last chemo treatment was in February 2002. My CA-125 was normal, but only a CT scan could confirm my remission. My oncologist met with me to deliver the results: Clear.

“Your chance of recurrence is 50 percent,” she said.

I was entering a new era, one that unsettled me even more than my original diagnosis — waiting for recurrence. I told Dr. Hunter I was scared.

“But everything has gone exactly as we’d hoped. You did everything you were supposed to do.”

“Well, it’s not like I had a choice,” I said.

Dr. Hunter looked down. After a pause, she said quietly, “I know a little something about not having choices.”

“What happened?”

“It wasn’t cancer. But let’s just say there was a certain pharmacist.”

Dr. Hunter’s chemotherapy patients griped loud and long about Robert Courtney, but I had never before heard Dr. Hunter or any of her staff mention his name or the effects of his diluted chemo drugs.

“Every morning,” Dr. Hunter said, “I have to get up and look at myself in the mirror. Every morning I want you to get up and look in the mirror and say: Today I am healthy.”

Sometimes you can see an enemy most clearly in the eyes of the soldiers. This doctor, who had dedicated her life to saving women, who had a reputation as one of the most caring and skilled oncologists around, would never be the same. The sadness is etched in her face.

As for me, cancer turned my life upside-down. Everything changed — my sex life, my work, my dreams and hopes for the future, my sense of myself and my place in the world. Friends and family did all they could, but the loneliness of my diagnosis went unrelieved until I discovered an international online support group of over 1,200 ovarian cancer patients at Association of Cancer Online Rescources.

In cyberspace I found solace among other women who were enduring the same limbo existence. Most signed their posts with date of diagnosis and organs removed. One woman’s list: Spleen, appendix, omentum, part of the intestine and colon, many lymph nodes, all female parts.

“BUT,” she wrote, “HE LEFT MY HEART!”

To comfort a woman whose sister was dying, I posted a true story about Anne Morrow Lindbergh‘s search for peace after her infant son was kidnapped and murdered. Lindbergh wrote in her diary that she tried many false paths to recovery. Only one thing helped: The story of the mustard seed.

A woman who lost a baby asks if there’s a cure for her unceasing grief. “Yes,” a holy man replies. “You must find a house that has never known sorrow, take a mustard seed from that house, and you will be cured.”

The woman spent the rest of her life looking but could not find a house that had never known sorrow.

To suffer is to be human. I resolved to stop comparing myself to people whose years stretch into the 80s and 90s. Instead I thought of the men, women and children on Titanic who died an icy death far from home. I thought of the doomed airline passengers on September 11.

I, in contrast, expect to be in a warm bed surrounded by nurses and loved ones. And who knows? I just might survive, if for no other reason than to make trouble.

Twenty years ago ovarian cancer patients often died within one year of diagnosis. Now women are living two or three years, sometimes longer. Now we’ve formed groups, and we’re trying to change our terrible statistics.

We may not be able to save ourselves, but maybe we can save our daughters and granddaughters.

© 2002 Donna Trussell and The Kansas City Star

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About Quixotic Chick

I write. I take pictures. I survived cancer.
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4 Responses to Everything Changed

  1. Meckenzie Owen says:

    “Never give up on anyone. Miracles happen every day.”
    My mother made that cross-stitch sign in Dr. Hunters office. Along with a few others. My mother was Georgia Hayes, the center of the Robert Courtney scandel. I enjoyed reading your story of your experience. Dr. Hunter is the best Dr. there is, and I enjoy reading others thoughts about her wonderful care of her patients. Thanks for sharing.

  2. Anonymous says:

    Donna, I had Thyroid Cancer in 2011, of course they say if you got to have cancer this is the one to have, but each day I live with the fear that it will return, just as it did before. I am leaving for my first Sewanee Writer’s conference on Monday and Kevin Wilson directed us to your site for “what to take”, I enjoyed all your blogs I read. Hang in there, cause if you aren’t hanging you have fallen. xx AJB
    alabamaauthorsays@blogspot.com
    sinnerfromthesouth.com

    • Thank you for the kind words, and for your concern. If all goes well for the next six months, in February I will celebrate ten years of remission. I am astonished, but grateful. Good luck to you too. And have fun at Sewanee. The campus is gorgeous, full of stone that looks and feels cool to the touch.

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