Tom Alesia's TC Story

Lessons cancer teaches me
The Capital Times, Madison, Wisconsin
A reporter's personal chronicle
By Tom Alesia, March 28, 1998

February 1998

Cancer makes you do strange things. That's why I stand outside Milwaukee's Bradley Center hoping to meet Scott Hamilton, the impossibly perky pro figure skater.

It's a rainy and windy 40 degree evening. I wear ear muffs over my bandanna, which covers what little hair I have. I hold my note for Hamilton: "Dear Scott, I've also undergone extensive treatments for testicular cancer ... "

Hamilton performs in a tour that he founded called "Stars on Ice." I give my note to a crew member, but my efforts fail to produce Hamilton. (His publicist already rejected my interview requests, citing the skater's busy schedule.)

Still, I'm here to applaud Hamilton for inspiring me late in my treatment when I faced major surgery to remove half of my lung.

Months ago, Hamilton became synonymous with cancer survival. He appeared on People magazine's cover; Larry King warmed to him on CNN; and NBC's "Dateline" profiled his winning battle.

During Hamilton's media barnstorming, I am diagnosed with the same cancer.

Family and friends, wanting desperately to offer encouraging words, refer to the chipper Hamilton.

At first, however, I have an odd request: Don't mention Scott Hamilton to me.

I fear learning about the trauma he experienced.

I fear his pitfalls.

I fear needles and cancer statistics and hospitals and life.

August 1997:

I learn I have cancer a few hours after preparing for a phone interview with infantile prop comic Carrot Top.

My fever -- bad enough to make my forehead as hot as a waffle iron -- returns that morning when I ponder questions about Carrot's new movie, which features such lines as "Who cut the cheese?!"

After a doctor eliminates infection, diabetes and mono, he orders chest X-rays.

From there, nothing is ever the same for me.

At the hospital, I grip a nurse's hand while the doctor sticks needles in my chest for a lung biopsy.

That night, the doctor comes to my hospital room.

I tell him to give me his best guess about my illness and to put the most positive spin on it.

He says the technical name for testicular cancer and adds, "It's treatable."

The next day, my wife, Susan -- who is three months pregnant -- and I meet my oncologist, Dr. Michael Frontiera, for the first time.

He asks us about our fears. We mention survival; I'm only 31. He reassures us.

Later, he outlines my treatment: "aggressive" chemotherapy. I will be attached to IV tubes four hours a day, each weekday, every third week through November. On "recovery" weeks, I'll get a single, half-hour chemo treatment.

Susan and I drive to West Towne Mall afterward and purchase a chain. The heart-shaped charm is inscribed, "I will get better."

Early September 1997:

Two doctors look at my chest X-rays outside a Madison examining room where I sit. I hum to prevent myself from overhearing them.

My breathing, at times, is labored. Cancer, which started painlessly in my testicle, spread across my lungs.

Four weeks ago, I hiked at hilly Devils Lake. Now, rising from a chair takes effort.

Dr. Frontiera enters the room. He tells me he conferred with a colleague about my X-rays. The other doctor, he says, looked at my spotted lungs and said, "Wow."

I smile nervously: "I don't suppose that was 'Wow' as in very good."

"No, Tom."

A FAMILIAR FOE:

I knew about cancer already. Boy, did I know about cancer.

Growing up in suburban Chicago, I was 6 years old when my mother, a nurse, was diagnosed with cancer. She died two years later.

I never knew the severity of her illness even when I saw her balding head in a rare moment that she wasn't wearing her wig.

She spent a lot of time in bed; she watched my first Little League game from a car.

One night, a week before Christmas 1974, several cars with out-of-town relatives arrived at our house. I rushed excitedly down the hall to greet them and saw my grandmother's ashen face.

My mother, age 36, had died.

Grieving was foreign to my father, my older brother and me. We were a lost family. I went to my third-grade class the next morning.

When Dr. Frontiera asks about cancer history in my family, I don't know what kind of cancer my mother had. I search boxes for notes I took from a conversation with my father before his death in January 1996.

She had cancer of the nasopharynx, behind the nasal passages. Only during my treatment did I learn that her cancer probably stemmed from heavy smoking.

As an adult, I saw cancer's damage up close two more times. My mother-in-law died of ovarian cancer, and the woman my father married in 1989 fell to breast cancer.

Three wonderful, wonderful women.

All gone.

Boy, did I know about cancer.

Mid-September 1997:

Dean Clinic uses two windowless chemotherapy areas, both smaller than a dorm room. Three padded, reclining seats are in each. Susan and I spend nearly 80 hours here over the next few months.

I fight the monotony and anxiety two ways. I reread favorite novels, including five comforting books by Minnesota writer Jon Hassler, and I listen to the most mellow music from Van Morrison and Alison Krauss.

One TV hangs above the three chairs. Nurses soon learn that, if possible, I shouldn't be paired with patients wanting to watch "The Price Is Right" or "Sally Jessy Raphael."

And all the time, there's drip, drip, drip as five IV bags, one to reduce nausea, fill my veins. Near the first treatment week's end, I'm as woozy as a punch-drunk boxer.

Susan worries, "You've lost your sense of humor."

That's when I hear noise in the hall. Another patient just completed months of chemo. Nurses gather to give him hugs and a rubber glove blown up like a balloon.

I snap awake, applauding and smiling.

That weekend, I experience how slowly I recover from chemo. There are three days of nausea and extreme fatigue.

Chemo puts poison in my body to kill bad cells; it also kills good ones.

October 1997:

My chest X-rays show progress. I ask when we'll do a CT ("CAT") scan, which identifies the most minute tumors.

Dr. Frontiera shakes his head, mentioning the X-rays.

"Tom, we can still see your problem from across the street."

Straightforward and confident, Dr. Frontiera gives us strength. I follow his three suggestions: Keep working; live life as normally as possible; and drink as much fluid as possible during chemo weeks.

Susan and I ask for help from our small family in the Chicago area. Friends, locally and nationally, offer support.

Susan's co-workers make meals for us all fall and winter. One couple paints our baby room. Get-well gifts pour in, from a youngster's homemade purple penguins to tiny boxing gloves. E-mails and letters arrive almost daily; I hear from a college roommate for the first time in six years.

At bedtime to avoid ever-present cancer fears, I read children's books, "The Adventures of Peter Cottontail" and the "Old Mother West Wind" series.

Though I take tranquilizers, I rely mostly on my mind's power. Several times each day, I close my eyes and visualize favorite areas, such as Vilas Zoo or Dells of Eau Claire near Wausau.

There's only one ominous cloud.

"Let's keep an eye on your left lung," Dr. Frontiera says.

November 1997:

During three months, I complete 27 chemotherapy treatments. Throughout my body are permanent brown streaks from chemo, tiny ones on my hand to a 4-inch-long "tattoo" on my calf.

I've experienced virtually every symptom associated with chemo treatments, such as swollen gums and numbness in fingers and toes. My veins are battered; it was tough for nurses to install IVs.

And trouble lurks.

X-rays and CT scans show a sizable tumor still on my lung. Dr. Frontiera mulls one possibility: two more weeks of chemo, then major surgery to remove the upper half of my lung.

My illness nears "rare" status. The surgery may be done in February, the month our baby is due.

Then the news gets worse: If the lung tumor is malignant, I'll need specialized in-patient treatment at the Indiana University Cancer Center in Indianapolis.

Oh, no.

That's when Scott Hamilton becomes my inspiration.

In a doctor's waiting room, I see an ad in USA Today listing Hamilton's entire "Stars on Ice" tour from Dec. 27 to April 11. Aside from a break for the Winter Olympics, it's a relentless schedule of one-night shows. Hamilton headlines.

I feel rejuvenated, thinking about how he survived this crazy illness and launched an exhaustive tour.

Two days later, Hamilton provides another boost.

Susan and I watch a cornball CBS holiday special featuring a magic snowman providing inspiration to those in need.

Hamilton narrates and skates in the program.

The next day, Susan comes home from work with a surprise for me.

I open the box. A 6-inch-tall stuffed snowman looks at me.

She says, "It's Magic Snowman."

Early December 1997:

When I arrive for an off-week chemo treatment, Dr. Frontiera steps into the waiting room.

"Let's take a walk, Tom."

He explains how he conferred about my case with his Dean Clinic colleagues during their weekly "tumor meeting." He also discussed it with federally funded specialists in Indianapolis, who developed the highly successful chemo regimen for testicular cancer.

"We think you should have the surgery now," the doctor says, leading me to meet the surgeon.

A lengthy incision, I learn, will be made below my underarm, around my shoulder blade and up my back. Half of my lung will be removed in a major surgery called thoracotomy.

The tumor will be studied by a pathologist. Six days after surgery, we'll know whether the tumor is malignant.

If it is, a frantic chase will be on to stop the cancer's spread.

BEFORE SURGERY:

I turn to the arts to keep my mind occupied. Susan and I attend CTM's delightful production of "A Christmas Carol." We walk repeatedly through the Elvehjem Museum of Art.

A Madison Symphony Orchestra Christmas program moves me in a joyous way I never expected.

And I almost missed the show.

Moments before the concert started, a woman handed me an extra ticket in the fifth row. The concert, it turns out, is sold out.

(Magic Snowman, incidentally, is in my pocket.)

The night before surgery, Susan and I attend the most lightweight film we can find. We see "Air Bud," about a basketball-playing dog who helps a youngster through lonely times.

We are the only two moviegoers at Market Square theater for the 4:40 p.m. weekday showing.

Surgery, Dec. 11, 1997:

I am so foggy afterward, I can't press the button to give myself morphine.

The next day, I feel like I've been stuck in a dryer for several cycles.

Then my roommate, a man in his early 80s, lapses into a coma; later, his family begs him to wake up.

I'm moved to another room, where a patient with heart trouble can't sleep. He calls the nurse more than a dozen times during the night.

At home, it takes what little strength I have -- with the help of Susan, who is seven months pregnant -- to lift me out of bed.

It hurts to laugh.

Five days after surgery, Susan and I face the impending pathologist's report.

We talk about handling bad news.

Reacting to good news, we agree, requires no preparation.

The results, Dec. 17, 1997:

Susan and I sit in a Dean Clinic surgeon's office, waiting for the doctor.

To relax, I read my notebook filled with things I enjoy: "Blue skies, (our dog) Lincoln's soft coat, our back porch ... "

Magic Snowman is in my shirt pocket.

Susan reads the notebook with me, but she's rigid, her face frozen. Cancer isn't a weight on our shoulders; it's a heavy tarp thrown over our bodies.

Minutes pass after the scheduled appointment time and still no doctor.

"A bike ride around Lake Monona, a campus walk on Sunday mornings, my niece Kristen ..."

I hear the surgeon outside the door.

"Holiday lights at Olin Park, leaves changing color, harbor seals at Vilas Zoo ..."

He steps inside the room.

"Sitting at the beach, Woody Allen movies, Susan's smile ..."

"Good news," the surgeon says.

I hear bits and pieces: "dead tumor," looks good, best we could hope for.

Trembling, I drop my head and cry.

"We did it," I tell Susan over and over.

I rush to a phone and call my brother, barely able to express the good news. Then I walk down the hall to Dean Clinic's Oncology Department to tell the nurses, real-life angels.

Outside, Susan knows what to do. She pulls a camera from her jacket. I stand near Dean Clinic's front doors. I raise one hand because the surgery keeps my left arm immobile.

Months ago, we dreamed about taking a celebration picture when my cancer went into remission.

I smile toward the skies. My mother died 23 years ago, almost to the day.

Susan snaps the picture.

March 1998:

"Hello, Tom, it's Scott Hamilton."

This phone interview was arranged four days beforehand after numerous rejections.

Did my note in Milwaukee persuade Hamilton to talk? (It's doubtful, I learn later, that he even received the message.)

More likely, tonight's Madison stop, where "Stars on Ice" will be presented at the Kohl Center, was identified as a market with slow ticket sales. In fact, the tour publicist tells me to stick to skating questions.

Regardless, our cancer experiences are so similar that it becomes the only topic. Hamilton and I discuss the illness with the familiarity of old high school buddies recalling good and bad times.

"Unless you've been through chemotherapy," Hamilton tells me, "it's really hard to discuss it with somebody.

"I meet kids from Make-A-Wish Foundation all the time through the tour. I know many of them are in chemotherapy. Until my treatments, I couldn't relate to what was happening to them. It was almost insensitive for me to talk to them about it before. Now I completely understand."

I tell him about using Magic Snowman ("Oh, I love it!") and how seeing his rugged tour schedule inspired me.

"I figure if I didn't ask, my body would never answer," he says about the tour. "I knew if I wanted to get back into skating, I would force my body to do something it would resist."

Hamilton, 39, calls his brown streaks from chemotherapy "my daily reminder of cancer."

We agree that the awful sight of so many cancer patients remains one of the worst memories.

"Everybody -- everybody -- has been touched by cancer, whether personally or through family and friends," he says.

"Now I can help the mission of cancer research: `Look at what happened to me.' Research is unbelievable. Now they can deal with different types of cancers immediately in a way that's effective."

A half hour later, we've run through so many emotions associated with cancer, Hamilton is slightly choked up.

"Man, it messes with your head," he blurts out. "It's depressing. But there's an end to it. It's amazing. It teaches you about yourself. You should really be proud of yourself, Tom."

I thank him for his help.

"I'm so glad I was a part of that," he says. "It really makes me feel good."

Cancer by numbers:

How far has cancer crept into our society?

That's why I'm alive.

Epilogue:

My son, Mark Eames Alesia, was born Feb. 9. He's a healthy baby with wonderfully alert eyes.

Eight days ago, I went to Dean Clinic for my first checkup to learn if cancer had returned.

It hadn't.

Dr. Frontiera said the chances of it coming back are small. He warned, however, that "you're not out of the woods yet."

I'll have blood tests and CT scans taken over the next two to five years.

As long as I need to, I'll wear my chain inscribed "I will get better."


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