Scenes From a Cancer Quest

HealFall 2007
Volume 1
Issue 2

Filmmaker with rare vascular cancer turns lens on herself.

Valentine’s Day 2003, several days before the utterances, Kris Carr learned she was sick. That day the New York actress/filmmaker was diagnosed with epithelioid hemangioendothelioma, a cancer of the vascular system that was found to involve both of her lungs and her liver.

Epithelioid hemangioendothelioma: a long label for a rare, incurable cancer.

There’s no widely used abbreviation for the disease, though insider docs refer to it as EHE.

In Carr’s case, the disease has metastasized and become stage 4.

But don’t tell Carr, 35, her illness can be terminal.

Armed with a camcorder and laptop, days after the diagnosis she began a video journal chronicling her story and the experiences of four other women with cancer.

What began as an instinctive exercise (“It’s what I knew to do’’) ended up being a unique story of her battle not only to survive, but to live.

She eventually collaborated on the finished work with her film partner and now husband, Brian Fassett, 41. Crazy Sexy Cancer was so impressive, The Learning Channel cable network has scheduled the two-hour documentary’s television premiere on Aug. 29, at 9 p.m. EDT.

Carr grew up a tomboy across the street from a dairy farm in upstate New York’s Westchester County. She went on to attend New York University, earning a degree in English. After college she found work as an actress in soap operas and television commercials and was thriving in the Big City when cancer called.

The documentary opens with Carr’s relatively mild meltdown and sassy affirmation, setting the tone for her gutsy, earthy film. In addition to interspersed profiles of four “cancer chicks’’ (a rock ’n’ roll tour manager, a journalist, a mom-to-be and an award-winning playwright/actress), the documentary shows Carr’s vulnerable moments and native wit.

Early in the film, Carr explores alternative treatment for her cancer and overall health, sheepishly looking at myriad approaches, including a healing clown, visualization exercises, crystals, massages, Chinese herbs and dance therapy.

Then, the tone sobers as Carr puts living with cancer to the test.

“You think you’re young, and now is forever. I wish I would have paid more attention, but I don’t know whether or not I could have prevented cancer. Now, I certainly want to do the best I can to keep it stabilized. If I have any say over it, I’m going to stay healthy.’’

Her regimen has improved her health, she says. Since her body do-over, which she playfully refers to as “eating her veggies,’’ she doesn’t get colds or half the ailments she’s had in the past.

You think you’re young, and now is forever. I wish I would have paid more attention, but I don’t know whether or not I could have prevented cancer. Now, I certainly want to do the best I can to keep it stabilized. If I have any say over it, I’m going to stay healthy.

The period right before she learned she had cancer was marked with stomach complaints.

“I had noticed problems three years prior to my diagnosis. I was in pain all the time. Bouts with constipation, gas. I was given the purple pill and told I had acid reflux, then told I had irritable bowel syndrome. You don’t ask, ‘Is it gas, or is it cancer?’ ’’

Before the diagnosis, Carr returned home from a film festival, and the next day after yoga class noticed pain in her left side. The following morning she was doubled over.

At first doctors focused on her gallbladder and wanted to remove it. “ ‘No, thank you very much. I’m leaving with what I came with,’ I told them,’’ she says, laughing.

When you’re young and have been reasonably healthy, doctors aren’t necessarily inclined to suspect cancer, she explains. Finally, a CAT scan found 24 tumors in her liver.

For a New York minute, Carr thought of getting her affairs in order. “That wasn’t me. For me, it was about coming up with my game plan. Getting the most information I could, looking for the best doctors. There wasn’t a lot of information out there.’’

In the documentary, she’s shown conducting her search for the No. 1 specialist the way a corporation head-hunts a CEO. She would employ the best, and he would work for her.

“If you are the right physician for my company, then I’ll hire you, but if you’re talking about life expectancy and statistics, and scaring the bejesus out of me, I’m not hiring you.’’

She found George Demetri, MD, director of the Ludwig Center at Dana-Farber Cancer Institute in Boston. Demetri is a leading expert in EHE. He’s also concerned about quality of life, says Carr. “He listens to patients who want to explore alternative medicines because Western meds don’t always have the answers.’’

Her parents, Ken and Aura Carr, agree Demetri is the best fit. “All one can hope is that you’ve got great pharmaceutical companies and a great doctor. Kris has one of the foremost sarcoma experts in the world,’’ says Ken Carr.

The Carrs accompany their daughter on her checkups. In an emotional scene in the film, the threesome drive to Boston for the initial visit with Kris in the back seat, coiled in the fetal position, wondering in a voice-over how her parents feel to see their child live with cancer.

Kris is also grateful for her therapeutic partnership with Demetri.

“Dr. Demetri has supported all the things I’ve done. The benefit is that my cancer is slow-growing. The more aggressive the cancer, the more aggressive the treatment,’’ Carr explains.

There has been no radiation or chemo because she needs the good liver she has, Carr says, and a liver transplant is risky because cancer is in both lungs. Demetri explains in the documentary that he’d like to see the EHE make the first move, mainly because of Carr’s healthy lifestyle: She is now a vegan, and she has never smoked.

She and Fassett are excited about their future and plan to have children. It was easy to fall in love with her, Fassett says. He says he gave himself a good talking to as he fell deeper and deeper. “I didn’t go into it blindly. I knew exactly what I was getting into. I was falling in love with this person, so I didn’t have much say. I’m absolutely willing to accept the consequences of whatever is to come.’’

At the same time, he says: “You have to be part of a future. Should I bother buying new clothes for this winter? Am I’m going to be here? Keep on planning because it has such a powerful effect.’’

Carr pragmatically sees the cancer experience as a tool to transform oneself.

“We all have something about ourselves we wish we could change, or that’s difficult to cope with or process. What are you going to do about it? Live your best life with cancer. Let it be that catalyst.’’

“My whole life changed. You don’t expect to hear that you have cancer in your late 20s, early 30s, when you’re finally getting it together,’’ she said in a telephone interview from the couple’s Woodstock, N.Y., home. She and Fassett were taking a break away from their Brooklyn apartment, the base for their company, Red House Pictures Inc.

Months into her project, Carr called on Fassett, a New York film editor, producer and cinematographer, to help. They married last September.

Fassett fell for her while editing the film, he says. “I always thought she was gorgeous. … It was clear from watching the raw footage that she was also sexy taking this on.’’

Carr, meanwhile, wants the documentary to eliminate the stigma attached to living with cancer.

“When my peers deal with cancer, it comes at a time when you’re planning weddings, landing that dream job, hoping for babies, buying your first home,’’ she says. Last thing you think about when you have cancer is the privilege of planning a future, “yet the truth is, that’s the most important thing, your attitude.’’

—Carr also has written Crazy Sexy Cancer Tips: A Girlfriend’s Guide. The book contains survival pointers from cancer patients.

Early scene, tight camera shot from a busy New York street. Tall, pretty, blue-eyed Kris Carr convincingly delivers her lines with kick-butt aplomb. "I'm not sick? ... I'm NOT sick! ... I am NOT sick!"