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Carpe Diem: Actress Valerie Harper on living with brain cancer

Gora, Susannah

doi: 10.1097/01.NNN.0000436397.21618.2c
Features: Valerie Harper

Emmy-award winning actress Valerie Harper is fighting a rare form of brain cancer—while continuing to work, enjoying time with her family, and appreciating the joy in each day.

Emmy-award winning actress Valerie Harper is fighting a rare form of brain cancer—while continuing to work, enjoying time with her family, and appreciating the joy in each day. Although there is no cure for her cancer, Harper has responded well to treatment—and her positive attitude knows no bounds. “I have to walk slower,” she says, “but after [this interview], I'm going to get out there and take a walk and breathe the beautiful air. It's a pretty day here. Seize the day!”



“For more than 40 years,” says Valerie Harper, with warmth and gratitude, “people have embraced me as their own. They have treated Rhoda like family.” Indeed, week after week, we welcomed Harper into our homes as the lovable, wisecracking Rhoda Morgenstern on The Mary Tyler Moore Show, and later on her own spinoff, Rhoda. We laughed with her, cried with her, and rooted for her. Fifty-two million of us even tuned in to watch her get married.



Maybe that's why it felt as if a member of our own family was sharing some difficult news when Harper revealed in March of 2013 that she has leptomeningeal carcinomatosis (LC), a rare and incurable form of brain cancer. Then again, as the four-time Emmy winner wisely points out, “All of us are terminal. Nobody is promised the next day, or the next moment. So live every moment, in the moment.”

Although there is no cure for LC, Harper has responded well to treatment and her positive attitude knows no bounds. “I have to walk slower,” she says, “but after [this interview], I'm going to get out there and take a walk and breathe the beautiful air. It's a pretty day here. Seize the day!”

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January of 2013 was an exciting time for Harper. While getting ready to take her show Looped on the road (for which she'd received a Tony nomination for her portrayal of screen siren Tallulah Bankhead), she was also preparing to promote her autobiography, I, Rhoda (Gallery Books/Simon & Schuster). The book ends on a high note: Harper's victory over lung cancer, which the lifelong non-smoker had been treated for in 2009. “It was gone,” says Harper of the disease, “and I felt it was gone, and I was getting screened regularly.”

But one day, while rehearsing Looped in New York, Harper began feeling strange sensations. “I started having numbness in my jaw,” she recalls.

Harper was eventually diagnosed with LC, which occurs when cancer cells invade the spinal fluid inside the meninges (the membranes covering the brain and spinal cord). “The brain, spine, and nerve roots are all bathed in spinal fluid, and so LC can affect any of those,” explains Jeremy Rudnick, M.D., a neuro-oncologist on the faculty of neurology and neurosurgery at Cedars Sinai Medical Center in Los Angeles, CA, and a member of the American Academy of Neurology (AAN), who treats Harper. Unlike more traditional cancers, in which there is often a solid “chunk” of tumor, the cancer cells in LC are diffused throughout the liquid of the spinal fluid. This makes the condition extremely difficult to diagnose and treat—and impossible to cure. “As you are treating the cancer cells,” says Lynne Taylor, M.D., neuro-oncologist, director of Palliative Care at Tufts Medical Center, and Fellow of the AAN, “they are continuing to divide. Eventually they can get in the way of vital bodily functions such as swallowing and breathing.”



Harper's LC was diagnosed by lumbar puncture (spinal tap) and magnetic resonance imaging (MRI). (See the online and digital editions of Neurology Now for more information on LC.) If the cancer cells have accumulated in the meninges surrounding the brain, symptoms can include “headaches, confusion, vision problems, and hearing and balance disturbances,” explains Dr. Rudnick. LC that has settled in the meninges surrounding the spine can show up as numbness or weakness in the arms or the legs or a tight, band-like sensation—something Harper had experienced around her abdomen before her diagnosis.

LC is never a primary cancer—it spreads from elsewhere. “This is a metastasis,” says Dr. Rudnick, “so it's coming from another cancer in the body.” In the case of Harper, “she had a lung cancer that was taken out years ago, and essentially, some of these lung cancer cells found their way to the brain,” Dr. Rudnick says.

LC is rare (affecting about 5 percent of patients with cancer), but doctors are seeing more of it. As Dr. Taylor explains: “Paradoxically, as treatments for cancer—particularly of the breast and lung—have gotten better and patients are living longer, that gives more time for the tumor cells to escape and hide in the nervous system. The immune system can't see tumor cells in there as well as it can in other places,” explains Dr. Taylor.

Harper could have kept her diagnosis private, but it was important for her to go public. For one thing, she wanted people to “understand that I wasn't lying to them about beating cancer” in her autobiography. She also hoped that this could be an opportunity to help people learn about her disease. She and her doctors showed audiences an MRI of Harper's brain on the TV program The Doctors. (Watch the video at Mainly, she wanted her fans to know that she is OK.

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She is indeed OK. Although her illness is incurable, Harper is responding well to the cutting-edge treatments she has been receiving. “With Valerie, we were very innovative in our approach,” says Dr. Rudnick. “We actually went back to her original lung cancer sample.”

Harper explains: “I had a lung cancer tumor removed in 2009 by a wonderful surgeon. And my doctor asked me at the time, ‘Can we keep this for research?’ I said, ‘Sure, why not? What am I going to do with a little tumor from my lung?’ I had no idea it was going to play such an important part in my life.” Once Harper was diagnosed with LC, her team of doctors at Cedars Sinai was able to have the original lung cancer tumor tested in a process called next generation sequencing, which identifies specific genetic mutations within tumors. When the genetic makeup of a tumor is revealed, doctors can use that information to choose which cancer drugs might be most effective against the tumor. Even though Harper's cancer is in her meninges, the cancerous cells are actually lung cancer cells, and so the disease is being treated as a lung cancer.

Hundreds of tests were run on her lung cancer tumor; and as Dr. Rudnick explains, the tests revealed “she has two very rare mutations in the epidermal growth factor receptor”—a protein that is found at unusually high levels on the surface of many kinds of cancerous cells. Next generation sequencing helped Harper's doctors decide which drugs might work best in treating her LC. Harper is being treated with the drugs Tarceva, which is a pill, and Alimta, which is injected (generic names erlotinib and pemetrexed, respectively).

Harper's doctors have also taken a forward-thinking approach when dealing with one of the greatest challenges in treating LC: getting medicines across the blood-brain barrier. This barrier evolved to help protect us by preventing all sorts of microscopic objects (such as bacteria) from being able to pass from the bloodstream into the spinal fluid and brain. However, this also means that medicines often can't get into that area in high enough concentrations to be effective. But Dr. Rudnick looked closely at reports coming out of Memorial Sloan-Kettering Cancer Center (where he trained) suggesting that “it's possible to give large quantities of these drugs once a week instead of giving smaller quantities of them daily—and by doing that you increase the quantity of the drug in the spinal fluid. That's exactly what we've done with Valerie, and it has worked beautifully with her.”

Harper has also come up with some nifty tools of her own: “I talk to the cancer cells—I do the stuff that actors do, called visualization. I tell the cancer cells that they are the dumbest cancer cells I know because they are killing the host. I say to them, ‘If you would just coexist with me, we could have a nice life!’” She tells of a friend also coping with cancer who imagines “Hasidic rabbis jumping out of a synagogue with little canes and caning the cancer cells. Another friend imagines cancer as black sludge in his prostate; he visualizes going in with a fireman's hose and hosing it all out.” She has also made up a special acronym for one of her drugs: “Tarceva: To Aggressively Remove Cancer Everywhere, Valerie Announces!”

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It's that kind of spunky optimism that has endeared audiences to Harper over the decades. She's been brimming with it her whole life. A gifted entertainer since childhood, Harper studied at New York City's famed Quintano's School for Young Professionals, where her classmates included Sal Mineo and Tuesday Weld. In 1970, Harper (who had by this point moved to California with her then-husband Dick Schaal) was performing in a play that only ran for two weeks—but at one of the performances, a woman named Ethel Winant, the then-head of casting for CBS, was in the audience. After seeing Harper's performance, she wanted her to come in and read for the part of Mary Tyler Moore's friend, Rhoda, in a new TV show. The rest, as they say, is history.

Widely considered one of the best and most influential television shows of all time, The Mary Tyler Moore Show ran on CBS from 1970 to 1977, garnering dozens of Emmys along the way. The show, starred Mary Tyler Moore as a single woman who worked at a TV news station with a hilarious band of colleagues (portrayed by Ed Asner, Betty White, Ted Knight, and Gavin MacLeod), and whose best friend and neighbor was a self-deprecating, smart-aleck, transplanted New Yorker with a heart of gold, Rhoda Morgenstern (Harper).

There was something special about Rhoda—and it was more than just those silk headscarves. “I think it's her sense of humor that draws people to her more than anything. The greatest comedy writers in the world were writing jokes for her,” Harper says.

As Harper observes in her memoir, “Rhoda was written for anyone who used humor to hide struggle, sadness, and fear. Anyone who wanted someone to commiserate with over body-image issues and boy trouble could turn to Rhoda. Anyone who dreamed big and fell flat had a friend in Rhoda. And then anyone who kept going had her as an ally.” Unlike some of the picture-perfect TV heroines before her, says Harper, Rhoda had “struggles—with weight, with guys—everything was not going swimmingly.” Her man troubles were an endless source of comic gold, and her self-deprecating cracks about her sorry love life endeared her to the audience. “What am I?” Rhoda once asked. “I'm not married. I'm not engaged. I'm not even pinned. I bet Hallmark doesn't even have a card for me!”

The Mary Tyler Moore Show was also seminal because of the groundbreaking ways it dealt with a wide range of issues that weren't normally confronted on sitcoms at the time, including racial prejudice, divorce, pre-marital sex, homosexuality, and religion (Harper isn't Jewish, but Rhoda is, and anti-Semitism was addressed in an episode called “Some Of My Best Friends Are Rhoda”). And, in particular, the show's portrayal of women was indicative of major cultural shifts of the time, and of the growing achievements of the women's liberation movement. The show also staffed many female writers.

Harper's mother, who put her own career plans on hold to raise a family and then eventually returned to nursing, used to say to her, “‘Just remember: no matter what anybody tells you, women are not second-class citizens.’ She was a huge influence in my life,” says Harper, who has worked to get the Equal Rights Amendment passed.

After four years on The Mary Tyler Moore Show, Harper was given her own spinoff, Rhoda, which followed the titular character as she moved back home to New York. On the series' first episode, the lovelorn Rhoda meets a terrific guy—and when they eventually got married, they had 52 million guests. It remains one of the most-watched episodes of television of all time.

Rhoda went off the air in 1978 (the same year Harper divorced amicably from Schaal). When Harper needed to get in shape for a film role (in 1979's Chapter Two) that required a swimsuit scene, friends recommended she work with an in-demand personal trainer named Tony Cacciotti. Though theirs began as a professional relationship, Harper and Cacciotti fell in love, eventually marrying in 1987. Harper has called him “the most wonderful husband God ever put breath into.” Harper and Cacciotti (who has also worked as an actor, director, producer, and stuntman in Hollywood) have a daughter, Christina, and a production company called T.A.L., which stands for Together At Last.

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How is Valerie Harper spending her time nowadays? “I'm living exactly the same—I just folded some laundry, honey!” she says with a warm laugh. And how is she feeling? “So far, I don't have pain or side effects, either from the drugs or from the disease,” she says. “I'll be ready for them when they come, if they come. You can't be so focused on what might happen that you have no life.”

She's also embracing the healthy lifestyle that she and her fitness-expert husband have always espoused—they don't drink or smoke, they eat well, and they get plenty of exercise.

The importance of a healthy lifestyle—even (or especially) when confronting a terminal illness—can't be stressed enough, experts say. “When we've looked at all cancers, diet and exercise play a role,” says Dr. Rudnick. “Diets like the Mediterranean diet have been demonstrated to have survival benefits. We know that moderate exercise, even in people with brain tumors, has been associated with a survival benefit.” Plus, maintaining a healthy weight has benefits when facing neurologic challenges because, as Dr. Taylor points out, “If you've got a neurologic problem making your hand weak or your foot weak, then the lower your body mass, the more easily you will be able to move through your day and deal with whatever weakness you have, and the better you are going to feel.”

Her disease is still incurable—“we're not going to get it to disappear,” says Dr. Rudnick, “but I'm not writing her off anytime soon.”

Indeed, Harper is still going strong. In fact, the former Broadway dancer has signed on to be a cast member on this season of ABC's hit series Dancing With The Stars. Harper was also the subject of the recently aired NBC documentary “Valerie's Story: A Meredith Vieira Special,” for which Vieira and her team “followed my journey,” says Harper.

The NBC documentary is just one more way Harper chose to let her fans in on what she's going through—and her straightforward attitude about death is something seen so rarely in the media. Indeed, after a lifetime of outspokenness and activism, this may be Harper's greatest cause yet: helping us come to terms with our own mortality and encouraging us to prepare for the inevitable. “I am very, very committed to getting my affairs in order,” says Harper. “I talked to my wonderful sister, a terrific lawyer, who has two young children. I said, ‘Of course you've done it,’ and there was a long silence on the phone. She said ‘Val, I create wills, advance care directives, and funeral arrangements for many of my clients. But I have not done it [for myself].’”

Harper urges everyone to do this kind of planning as soon as possible. “It's never too early,” she says emphatically. “You can do it at 30 and then change it when you're 50 or 80. The point is you can't do it too early, but you can do it too late.”

Says Dr. Taylor, who has created a Palliative Care program at Tufts, “Every day, I see that patients and families are not willing to discuss quality of life and the end of life. I applaud Valerie for bringing this up.”

Even though she maintains a positive outlook, Harper doesn't deny the sadness of her situation. “You must put this in the article: there are times when I am really sobbing, feeling grief,” she says. “But I let it be there, I feel it, and I release it. And then, somehow, I'm not grief stricken, because I've given the grief space.”

At the end of her memoir, Harper wrote of how lucky she felt to have lived the life she has. When asked if she still feels lucky, Harper replies emphatically, “Yes. I really think I am extremely lucky. I am grateful for something every day.”

“My message is: live as much as you can, as well as you can. None of us know when we'll breathe our last breath,” says Harper. “There are so many people who have been told, ‘You'll be dead in six months,’ and they are alive 13 years later. What if I extend my life a year? That could happen…. And I am open to spontaneous remission!” she says, laughing.

Whether or not we are facing a diagnosis such as Harper's, all of us can choose, she says, to “really live the remaining days, weeks, months, years—and,” she adds, “to be open to miracles.”

© 2013 American Academy of Neurology