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Abbreviations & Acronyms
dx diagnose, diagnosis
FSH follicle-stimulating hormone
IBS irritable bowel syndrome
IVP intravenous pyelogram — study to look at the kidneys and ureters
NED no evidence of disease
s/s signs & symptoms
SLS second-look surgery
TAH / BSO total abdominal hysterectomy / bilateral salpingectomy and oophorectomy — removal of, respectively: uterus, fallopian tubes and ovaries
tx treat, treatment
US ultrasound
WAR whole abdominal radiation
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Donna Trussell

Submitted on 09/24/2003
Photo of Donna Trussell In September 2001 surgery I was diagnosed with stage IIIa clear cell ovarian cancer. A year later The Kansas City Star published my story. I own the copyright, and you have my permission to post my story.


Kansas City Star - Monday, September 2, 2002


A year ago the phone rang: 'How about surgery tomorrow?'

For September, Ovarian Cancer Awareness Month, writer Donna Trussell decided to tell her story. After an oncologist removed a mass the size of a small grapefruit, she had a 30 percent chance of surviving five years.

By Donna Trussell

Special to the 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 the advancing of menopause. After all, I was 47 years old.

I'd get severe bloating for a day -- I wanted to stick an ice pick in my stomach to let the gas out -- and then it would subside. I'd get constipated.

And I'd get tired. I bought some 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. Bad things happen in emergency rooms. But she convinced me to go and may have saved my life.

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

"No! That's not the way I do things. I do research. I get second opinions."

"You may not have a 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, and 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. My ovaries and the mass had to go. An oncologist would do the surgery.

I wanted nothing to do with an oncologist. An oncologist might drum up cancer cells just to increase business, right?

The oncologist in question was Verda Hunter. Her name had been in the news. She had turned pharmacist Robert Courtney in to the FBI for diluting chemotherapy drugs.

But I didn't want to see a Verda who specialized in gynecologic oncology. What kind of woman would go into a field where you watch people die? A woman named Verda, that's who.

I pictured a comedian in a leopard-skin, pillbox hat and cat-eye glasses with rhinestones. *Verda.* Well, let this Verda try to railroad me into unnecessary surgery.

On Verda's door was the word "oncology." I winced.

There was a form to fill out. I asked for a pen, and the receptionist pointed to a cup full of silk flowers.

"Pull one out," she said. The flowers were pens. "We haven't lost a single pen since we got those," she offered.

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

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

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

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 had seen 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 evaporated.

The surgery was scheduled in three weeks, at the end of September. But 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 day -- 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 was all beginning to seem like a nightmare -- an exhausted, unshaven, melancholy Peter Jennings; ghoulish footage, repeated endlessly, of a jet liner crashing into the tower; 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 going to sleep was a masked face standing over me, and I thought I saw compassion in the man's brown eyes.

The next thing I knew I heard a voice 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. 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 know for 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," she said, "but I don't want you focusing on that. The five-year survival rate for Stage III is 30 percent."

With the recent 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.

"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 goners, that I discovered how fortunate I was. I had found 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. Rather, people with courage.

In Dr. Hunter's office are makeshift signs that say, "Never give up on anyone. Miracles happen every day." A year ago such piety would have made me squirm, but everything takes 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 fight.

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

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

"But if they're free, you know they'll all be Midge wigs," she said.

Midge wigs?

"Midge, 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, whom was I kidding? Some women pencil in eyebrows, but I preferred the barefaced cancer patient look to that of the 1930s movie star.

I learned to forgive well-meaning friends who offered words of dubious comfort. One 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 told me 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 said that the bus scenario isn't even a good comparison. 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 survivors will undergo debilitating treatments for the rest of their lives.

My last chemo treatment was in February. 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."

She looked away and then said quietly, "I know a little something about not having choices."

"What happened?" I asked.

"It wasn't cancer. But let's just say there was a certain pharmacist."

The chemotherapy patients would loudly gripe about Robert Courtney all day long, but I had never heard Dr. Hunter or any of her staff mention his name or refer to him -- or the effects of diluted cancer drugs -- in any way.

"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'm 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 was unrelieved until I discovered an online support group of 1,200 ovarian cancer patients -- www.acor.org.

There I found solace among others who were living the same limbo existence. Most of these women signed their posts with date of diagnosis and organs removed. Here's one woman's list: spleen, appendix, all female parts, omentum, part of the intestine and colon, many lymph nodes.

"BUT," she wrote, "HE LEFT MY HEART!"

To comfort a woman whose sister was dying, I wrote about Anne Morrow Lindbergh's search for peace after her infant son was kidnapped and murdered. She tried every false path there is to recovery. Only one helped, the story of the mustard seed:

A woman who's lost a baby asks if there is a cure for her grief. "Yes," a holy man replies. "You must find a house that has never known sorrow, take a mustard seed from that house, and then 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 who live into their 80s and 90s. Instead I thought of the men, women and children on the Titanic who died an icy death far from home and of the doomed airline passengers on Sept. 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 perhaps we can save our daughters and granddaughters.

Donna and Robert Trussell

Donna Trussell is a poet, fiction writer and former editor and film critic. She lives in Prairie Village. Her husband, Robert Trussell, is the Star's theater critic.

Donna Trussell reports that she bought the prettiest hats she could find, forgetting that hair automatically goes with any outfit but hats do not. The hat she wore most was a plain black beret.

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