ENEMY WITHIN - Arts and Entertainment - The Independent

ENEMY WITHIN

After years of hard work, Liz Tilberis landed her dream job as editor-in-chief of the US fashion bible, 'Harper's Bazaar'. And then her doctors told her she had ovarian cancer. In this extract from her powerful new book, she tells of her battles with her body

IT WAS TO be the most glamorous and celebratory night of my life, a fairy-tale culmination of slavish work and great good fortune. That evening in December 1993, I was at home in New York about to greet 250 guests for the sort of soigne party I used to read about in urbane novels and the society pages. Out on the street, the arriving limousines created mini-gridlock and sparked a reverie. I thought of riding the number 13 bus to my first job as an assistant at British Vogue more than 20 years before and the remarkable personal odyssey begun then: becoming the editor of that magazine and now, as a recent arrival to New York from London with my husband, Andrew, and our two sons, editor-in-chief of Harper's Bazaar.

The Upper East Side brownstone that we'd rented had a triple- height atrium as the main living space and a vast wall of windows overlooking a garden with a koi pond. Everything but the fish was decorated for the holidays. Trailing garlands of pungent spruce hung from the balcony and dozens of white poinsettias bloomed on every surface.

Fashionable New York would gather under my roof that night: friends, business colleagues and new acquaintances, some to welcome me and show support for Bazaar, some to check out the latest in a controversial spate of British imports to head US magazines. I began to receive my guests, who were dressed in a stylish spectrum from jeans to tuxedos: Calvin Klein, Ralph Lauren, Todd Oldham, Linda Evangelista seemingly glued to her significant other, the actor Kyle MacLachlan, Evelyn and Leonard Lauder, Revlon chairman Ronald Perelman, Donna Karan, Isaac Mizrahi and Paloma Picasso among them.

That evening should have been a blissfully defining moment. Almost two years before, under relentless media scrutiny, I'd been charged with regenerating Harper's Bazaar as a fashion force, to rescue it from recent decline and reclaim its pre-eminence in publishing. Finally the effort was paying off. Except that it was the worst of times. I had cancer. I had ovarian cancer, and I was scheduled for surgery the next day. And nobody at that party knew except Andrew and me.

IF ANYONE AT the party had asked me about the previous week, I would have smiled and prattled on about how I'd been so busy closing the March issue - a far cry from the truth. Most of that time was spent in a hazy succession of doctor's appointments, beginning with an innocuous check- up with my gynaecologist.

When I'd moved to New York in March 1992, I was invited to a party at Leonard and Evelyn Lauder's art-filled Upper East Side apartment, where, after dinner, as a sort of parlour game the guests made me a list of the city's "bests": the best drycleaner, the best fishmonger, the best baker of birthday cakes, the best shops for emergency chilled Chardonnay, the best gynaecologist. Dr Sharon Diamond was nominated top gynaecologist, and I took note and went to see her. Tall and slim, with a soft-spoken intelligence, she was close enough to my own age that consulting her felt like having a friend looking out for me. My first visit, soon after the Lauders' party, was uneventful, a routine examination. My records had not yet been transferred from London, but my medical CV was a permanent file in my brain.

In 1978, I'd learnt I was infertile, the result of undiagnosed pelvic inflammatory disease (PID) that had caused irreparable damage to my fallopian tubes. Desperate to have a child, I'd undergone major surgery in which one ovary and one of my tubes were removed and the other tube cleared. When I failed to get pregnant, I proceeded to nine attempts at in vitro fertilisation and repeated use of the fertility drugs Clomid and Pergonal. All the efforts were in vain - I never conceived, and Andrew and I went on to adopt our sons, Robbie and Chris.

As I related this history, Dr Diamond took a lot of notes but said that I presented an unexceptional and straightforward infertility picture. Since I was no longer interested in getting preg- nant, I was told to come back in a year. But I kept putting off that next appointment.

Typically I'm a sanguine, optimistic person, and I don't often get overwhelmed or depressed, but during the summer of 1993 I was moody and lethargic, begging off almost all social invitations and sleeping for hours on end.

On Thanksgiving weekend, out at the beach house we rented on the eastern end of Long Island, I called the senior staff of Bazaar to say, "We've got to sit down and talk on Monday morning." I was fretting about where the magazine was going, and whether we were driving ourselves hard enough and pulling together as a team. Despite our recent awards and success, we'd been a fractious lot, too stressed with the logistics of redesigning the magazine to get to the creative part, the fun. Hindsight now tells me I was casting my own gloom on others. I remember staring out the window that weekend on a dark day that matched my mood and having a flash: I wonder if I'm sick. Suppose it's cancer. Such a thought was unusual for me. But I think, subconsciously, I knew.

When I came to Bazaar, I weighed about 150 pounds, which is practically illegal in our business - even more so in New York than in Europe - and my weight had been the subject of rude gossip. One newspaper article, one of the kinder ones, called me "bovine". Under the influence of my slender staff, I'd lost about 20lbs that first year at Bazaar, but now I was starting to gain again. My stomach was bloated and uncomfortable, and I'd been running a low-grade fever. Back in the city after Thanksgiving, I called for an appointment with my gynaecologist as soon as possible. Sharon Diamond was still away for the holiday, so I was examined by her partner, who found some pelvic masses that she thought might be abscesses, a fairly common complication of PID. She prescribed antibiotics and sent me for a vaginal sonogram.

Ultrasound is a painless procedure, but it requires a most ungainly and undignified position, legs splayed, with a probe stuck practically up to your throat. At one point, the technician who was guiding the instrument summoned her colleagues: "Come look at this." As a doctor's daughter, I know that when the professionals think it's interesting, it's something, but no one would say what kind of something, only a confirmed sighting of the masses the doctor had felt.

Dr Diamond called when she got the ultrasound report. She said that I was not to get alarmed, that this might be a recurrence of my earlier infection, that there might be enough scarring in the abdomen from my tube-clearing surgery to cause these symptoms, but that my history meant I might be at higher risk for ovarian cancer. Infertility is considered to be a significant risk factor for the disease, and a controversial study out of Stanford University the previous year had implicated the use of fertility drugs, particularly for women who never became pregnant. We needed to rule out the possibility of ovarian cancer with a blood test called CA-125, to measure the proteins shed by some cancer cells that induce an immune response.

I did not panic. I remembered the reassurances that women are always given to allay our fears about cancer. In the face of an anomalous test result, we're constantly reminded,"It's probably nothing." And there is no cancer of any kind in my family, an unusual statistic in itself. I stopped by the doctor's office briefly to have blood drawn for the CA- 125 test and scheduled a follow-up appointment to get the results. This time I brought Andrew.

Dr Diamond had received the results. Normal is below 35 parts per millilitre. Mine was over 2,000. She later confessed that she was in a terrible quandary, already troubled and suspicious. There was a dramatic contrast between the pelvic exam of the previous year and this one, and she had her doubts that just an infection could produce those differences. The safe and sensible thing to do, Dr Diamond advised, was to have a consultation with her friend and colleague Dr Peter Dottino, head of gynaecologic oncology at Mount Sinai Medical Center. Two days later, on Monday, I was in his office.

Dottino wasn't prejudiced by my history or even by my blood test - he had done operations where a pelvic mass and a sky-high CA-125 indeed turned out to be benign abcesses. But when he examined me he felt certain nodules that meant either severe endometriosis, when part of the uterine lining grows outside the uterus, or cancer. I needed an operation either to rule out or rule in cancer. "We need to do this tomorrow," he said. I thought about the possibility that I had cancer (implausible), I thought about the 250 people coming for a party on Thursday (indubitable), and I begged for a few days' respite. "Mrs Tilberis," Dottino said, "I don't know if you have ovarian cancer, but if you do, it's serious. What's more important? Saving your life or being the life of the party?"

"Will two more days make a difference?" Andrew asked. Dottino sighed and said, "No".

"Good," said Andrew. "Then we'll have the party."

But Dr Dottino made it clear that surgery was imperative. He would operate on Friday.

I want to say that the night of the party felt like a dream, but of course it was a nightmare. Sometimes I'd catch Andrew's eye, and we'd share the kind of silent, private exchange available to long-married couples. He was smiling too, a big fake smile, knowing that at this time the next day, he'd be waiting for me to come out of surgery, waiting to find out if I would live or die.

I WAS THE village idiot about ovarian cancer when I went in for my surgery. But I could barely remember my name that day: I had a horrific hangover.

Early that Friday morning, 17 December, Andrew and I went to a carol service at the boys' school. It was so peaceful to sit there listening to the choir. I couldn't have planned for a better antidote to the anxiety of the past several days. Most of my time had been taken up with blood tests, X-rays, electrocardiogram and CAT scans. When I wasn't baring my veins, I was wrapping presents for the boys. Robbie was 12 and Chris just eight, so they'd been told only that I was going to the hospital for some tests.

We'd ordered a car to drive us to the hospital, and Andrew stay-ed until I was admitted. I was wheeled miles and miles through the bowels of the hospital to a holding bay outside the operating room (OR). A nurse handed me a consent form, granting Peter Dottino permission to take out any part of me he found necessary to remove. My last words to him before the anaesthesia began to take effect were, "I know I don't have cancer." He clutched my arm and said, "I hope you're right."

I HAD CANCER. Stage III ovarian cancer.

When I woke up in the recovery room, Peter was standing over my bed saying, "You're going to make it, kid; we caught it in time." He had removed my remaining ovary and fallopian tube, my uterus, part of my colon (rejoining the pieces with those magic hands so I thankfully didn't need a colostomy) and the momentum, the apron of fat that covers the intestines.

"Did you get it all?" is the first question you think of when you wake up from cancer surgery, but it turns out that's not even the intent with ovarian cancer, which tends to be spread around in little Rice Krispie-size particles. The largest tumours are removed in a process called "debulking" and the goal is to leave no tumour larger than two centimetres. Anything smaller than that can be eradicated by chemotherapy. Confronted with a diagnosis that could no longer be dodged, my denial was supplanted in one part of my brain by a degree of equanimity, the calm of the inevitable.

By the time I left the hospital just two weeks later, it seemed like the entire world knew about me, at least in my own media microcosm where gossip travels like the common cold.

CHEMO USUALLY consists of several drugs combined in a "cocktail", so the tumour doesn't become resistant to a single component.

The genesis of chemotherapy dates back to the Second World War, when doctors examining sailors who'd been exposed to mustard gas found that most of their white blood cells had been destroyed. Since leukaemia is a type of cancer that produces too many white blood cells, medical research began to focus on the possibility of using chemicals intentionally to kill cancer cells. Today standard "conditioning" for ovarian cancer includes cis-platin, a distant relative of the platinum used in fine jewellery, which binds with the DNA of the cancer cells to prevent them from dividing and reproducing. (One of the side effects of chemotherapy is akin to heavy- metal poisoning.) Usually, chemo is given in six to eight sessions spaced three to four weeks apart. But Peter Dottino had written a protocol, or blueprint, for a different regime based on a theory called "dose intensification", in which the treatment is accelerated to just nine weeks. In a more compressed time, the drugs seemed to attack the cancer faster, stronger, better. He got me into the programme.

Shortly after the New Year, I went back to the dismal citadel of Mount Sinai. The chemo drugs came in a powdered form that had to be liquefied in an IV bag. But first I was hydrated to protect my kidneys, which meant taking in gallons of water through the IV and making constant trips to the bathroom. When chemotherapy is given by IV, the caustic chemicals can burn and scar the skin. So, in a short, one-time-only surgical procedure for which I was blessedly put to sleep, a port catheter was inserted beneath the skin just below my collarbone, leading directly into a major artery and dumping the drugs quickly into my bloodstream. Living with a port cath under the skin seemed a small sacrifice for my lifeline to chemo.

ASIDE FROM the initial puncture, chemo for my type of cancer is not painful, but it's miserable. Each session lasted about 24 hours, and I'd sleep that night with the medicine dripping every few seconds. I usually went into the hospital on a Sunday, and on Monday I would sit at home, unable to move even if my shoes had been on fire. I threw up only once but it was like being seasick all the time: I was nauseated, unable to eat or even be around food. Since the platinum was destroying the white blood cells that normally protect against infection, I was given daily subcutaneous shots of a "fertiliser" called gross cell stimulating factor that makes the body start producing white cells again. I had to wear white paper masks everywhere - to the office, the movies, the stores.

After the first few treatments, as predicted, I started losing my hair and had to make some decisions about my appearance. I'd been wearing my hair in a shoulder-length bob for as long as I could remember, but Didier Malige, my great friend and master hairstylist said, "It's going to fall out anyway, so why not go short?" I've since learned that this is wise counsel for any woman about to undergo chemotherapy - it's somehow more traumatic to see long strands of hair spiraling down the bathroom drain than to deal with the hair issue straightaway and accept the temporary idea of wigs. I also lost eyelashes, eyebrows, pubic hair, underarm hair and the hair on my legs - everything except my "moustache", a bitter cosmetic irony.

In May 1994, Peter Dottino took 49 biopsies in a second-look procedure, determinedly searching like Hercule Poirot for any tiny malignant holdouts in my body. The aftermath was excruciating - I was bruised for months afterwards - but I was declared cancer-free.

IT COULDN'T BE happening again is what I was thinking in the summer of 1995. Ever since moving to New York, I'd dreamed of these indolent weekends in my own home with my own things on the eastern end of Long Island - just Andrew and the boys and a few dozen lobsters. We finally bought a house covered in weathered grey shingles and hidden in woods at the edge of a west-facing harbour, abutting an old whaling cemetery. I was feeling and, dammit, even looking good. I had put cancer behind me. The only real reminder was my monthly CA-125 blood test. Any number under 35 was considered normal. And in early June, mine hit 193. Somewhere in my body, too infinitesimal to be perceived in any way but this, there was a trace of cancer.

It was a bitter pill, accepting that my body had once more turned against me, but it was not entirely unexpected. Ovarian cancer is like a cockroach, defying an arsenal of poisons. Now we had to call in the big guns, and my doctor did not hesitate for a moment to let me know which of the options available was his heartfelt recommendation: zapping me with megadoses of chemotherapy, followed by bone-marrow transplant. BMT. Andrew and I tried to listen impassively to Peter Dottino's primer on the subject. "The reason we can't cure cancer is that we can't give enough chemicals without killing the patient," he explained. "The more chemo we give, the worse havoc we wreak." Chemo has a profound effect on bone marrow, the spongy material in the cavities of large bones that's a factory for blood: it makes red cells, which give blood its colour and carry oxygen throughout the body; white cells, which fight infection; and platelets, which cause the blood to clot. "BMT allows us to give an essentially lethal treatment and then support the patient," Dottino explained. "We take out some of your own marrow, freeze it in liquid nitrogen, and when you're sicker than shit, we give it back. We haul you to the brink, push you a little bit over, and then pull you back."

BMT is a front-line defence for some cancer patients. More than 50 per cent of those with leukaemia are cured with the treatment, but it's still unproven against solid tumours like mine. Dottino freely admitted I'd be offering myself up as a guinea pig.

BMT sounds logical: it's like removing the furniture before fumigating the house. But a small number of people die from the remedy itself, and it renders you susceptible to every conceivable kind of complication. Without red cells to carry oxygen, you can become anaemic. Without white cells to fight infection, something as simple as athlete's foot can mean big trouble. Without platelets to cause clotting, you can bleed uncontrollably if you cough. I'd be in the hospital, in isolation, for a month.

Cancer experts don't know exactly why solid tumours are more difficult to vanquish - they respond to chemotherapy, but the cancer often comes back. "It may be that the cells develop resistance to chemo, or inactivate it, or learn how to pump it out as fast as it enters," explained Dr Edward Trimble of the Cancer Therapy Evaluation Program at the National Cancer Institute. "With solid tumours, we haven't been able to show that increasing the zapping benefits the patient. But it's most likely to help the woman who has a small volume of cancer left and is sensitive to platinum."

That meant me. I had only microscopic cancer in my body. On Monday morning I called Dottino, with the tranquillity that comes from having one decision to make and making it.

"I'm going for it," I said.

I could hear the energy in his voice. "Come over right now," he ordered. But I was not to see much more of him for a while. At the hospital, he handed me over to a new team: the head of the BMT unit, Dr Steven Fruchtman, and his associate, Dr Luis Isola; their nurse, Virginia Ross; and social worker Donna Siegal. Dottino yanked Fruchtman out of a meeting to test my marrow right then and there. I didn't even have time to get anxious. Fruchtman injected a large dose of numbing medication in my buttocks and pulled a sample of bone marrow out of my hip.

With some cancers, like leukaemia, the bone marrow itself is compromised by disease, and the transplant must come from a donor, preferably a brother or sister, since you are most genetically similar to a sibling. (Each of your parents contributes only half of your genes.) But I was eligible for an autologous transplant, storing a batch of my own marrow in a procedure called harvesting.

Skipping the couture shows, I was scheduled for the harvest right after the Fourth of July. As I waited for the anaesthesia to take hold in the OR, the last thing I remembered was a nurse asking, "No eating or drinking since midnight? No contact lenses, false teeth, spare parts or extras?" Once I was out, I'd be flipped onto my stomach so they could get to my hips, where the marrow is easily accessible and there's enough available to get in one sitting. But 99.9 per cent of it is useless, because they're interested only in stem cells, which have the capacity to become everything else: red cells, white cells and platelets. Stem cells are rare, and there's no real way to identify them. So they make several holes on each side of the pelvis and stick a needle in dozens of times until they get enough. It's filtered and collected in a bag, where it's mixed with a preservative and an anticoagulant so it doesn't form little dumplings. I woke up quite sore but went back to work that afternoon.

Most of what is needed to replenish the blood comes from the marrow, but as a kind of backup the doctors wanted "peripheral cells" from the circulating blood. Red blood cells last about 120 days, and platelets last about a week, but white blood cells last only seven hours, so the peripheral cells are stored in case the bone marrow remaining in the body fails down the line when the white count has bottomed out. Back at the hospital and awake this time, I was hooked up to a machine that spun some blood out of my body with centrifugal force, isolating the stem cells and returning the rest, like factory seconds.

IT SEEMED like a bad joke, but I was suddenly homeless again. The house we'd been renting was sold, and our new rental wouldn't be vacated and painted for several months, so all of our possessions were once again packed into cartons for storage. My heart was breaking as I watched the men in my life head for the beach while I set up migrant camp in the Carlyle Hotel.

Finally, on 26 July, there was a vacancy in the BMT unit. It was already a full day on my calendar. I had agreed to be photographed that morning for a New York magazine story on the fashion press, and I saw no reason to cancel. With all the attention to my hair and makeup, I thought at least there'd be one decent picture of me if I died. I started chemo the next day. Almost immediately I couldn't eat anything, but I looked bloated from the IV feedings, which provide plenty of fluid to flush the drugs out of one's system. Chemotherapy, I was told, destroys rapidly changing cells, which is considered to be the essence of cancer, but these same rapidly changing cells are also what make up hair and skin and the lining of the mouth and stomach. My mouth became ulcerated and I couldn't swallow my own saliva, so I was given a small device to vacuum out my mouth. I knew I was dribbling, but I didn't care. My pale skin turned scarlet. Every day brought some new horrifying change to my body. I kept trying to snap into alertness, but part of the affront of this treatment was losing my cognitive self, as well as my physical self. At one point I was sobbing uncontrollably because I was convinced that I was to be the guest of honour at a charity benefit going on in the hall, but nobody came to get me in my wheelchair. I kept asking, "How was the party?"

By mid-August, I was improving enough to be excited when I heard people out in the hallway donning surgical gloves, thinking: maybe they're coming to see me. Lonely and bored and longing to get some work done, I had a fax machine installed in my room and storyboards of Bazaar layouts taped to the walls. Finally I was out of isolation, but my platelet count was still low, a condition with the lovely name of thrombocytopenia, which means your blood won't clot and you can bleed uncontrollably. A normal count is 100,000; mine was 30,000, and I couldn't go home until it reached 75,000. The ordeal was over, or so I thought, in the last week of August.

IT WAS a warm Labor Day weekend, and I was sitting outside on the patio. I was freezing cold and starting to feel my body burning from the inside out. Andrew took my temperature every five minutes and called Peter Dottino when it hit 100 degrees. I had to return to the hospital. Andrew called a car service so he could tend to me in the back seat, and I sobbed hysterically the whole way into the city, repeating over and over, "Why am I so sick? Why am I so sick?" It turned out that I had an infection under the skin where the port cath had been placed to administer the chemo during my BMT. Although it was a minor setback, it was one of my lowest points.

The day I finally went home was moving day for the whole family, into our new brownstone. The scene was chaotic - cartons piled up to the ceiling, windows taken out to get an armoire in. Most of the packing had gone on without me, and I was so weak, I couldn't lift a finger to help with the unpacking.

I experienced a series of "firsts" that would seem innocuous to a healthy person but felt momentous to me: the first time I had enough hair to shave my legs or use mascara, the first time I stood in line again for a movie, the first plane ride.

IN FEBRUARY 1996, six months after my bone-marrow transplant, my CA- 125 began to rise. A trace of cancer had returned. Terror turned to self- flagellation: I'd look at my body in the bathtub, the tracery of my scars muted under the water, and think: Failure. Fool. Defective wife and worse mother.

I had a CAT scan from crotch to breasts, which showed nothing. But since CA-125 is such an accurate marker of cancer activity for me, Dottino decided I needed another hit of chemo: this time Taxol. Taxol is unlike other chemotherapy drugs in that it paralyses rather than destroys cancer cells and produces far fewer of the miserable side effects of platinum drugs. By September, however, I was becoming sick and tired of Taxol. It was having little effect on my CA-125 and I felt absolutely beaten down. Dr Dottino agreed to stop the treatment, and I began to thrive. Repeated CAT scans were stable. Then at the beginning of December 1996, a lump about the size of a 50-cent piece appeared on my neck. I wasn't too concerned - for one thing, it got smaller and smaller until it became the size of a dime. Even Dottino didn't act like it was a big deal.

I GOT A CALL from my chemo nurse, Ann Bush, who said she'd been trying to reach me. I had a problem: my latest CA-125 count was 10,000.

"I should be dead," I said.

It turns out that the number on a CA-125 test doesn't correlate to the amount of disease but it did mean there was cancer somewhere. I needed another CAT scan, and the lump on my neck was to be scanned too. The scan confirmed that, yes, the lump on my neck was a very small mass and Dottino felt it should come out and be biopsied. It would be a minor procedure, scheduled for the following Wednesday. But that Tuesday was the Bazaar Christmas party. I seemed to be specialising in putting on a cheerful countenance for parties the night before surgery.

The next morning, Dottino came to get me in the ambulatory surgery unit, took me by the hand, and walked me into the OR. The whole procedure lasted about 20 minutes, and I was home by lunch. The lump turned out to be ovarian cancer. That the lump had got smaller all on its own was an extremely good sign: it meant that my body must have been mounting some kind of response. I agreed to do some more chemotherapy as a precaution in early 1997, but only after the couture shows in Paris.

I know people were commenting that I looked unwell, and I tried to explain my malaise as an extended repercussion of treatment. I didn't want to concede publicly that despite my strength of will, cancer was still thumbing its nose at me, and I didn't want to disappoint people who'd been rooting for my victory. I needed time to adjust to the idea of living with cancer.

Ovarian cancer is a vigorous and stalwart opponent but as time passes, access to new drugs increases, offering greater hope. I know I'm an extremely healthy person, even though I have cancer. There is no "standard of care" for where I am now. That's because, until recently, women with ovarian cancer died before they reached this point. My CA-125 is a rollercoaster: it goes up, I get chemo, and then it goes down. Chemo is my least favourite thing to do in life, and I hope to continue doing it for another 50 years. I'm planning to be around for a long time, and I am determined to lie in a shallow grave - no room for other unwitting victims of this miserable disease. !

BOOK OFFER

Readers can order copies of 'No Time to Die' (Weidenfeld & Nicolson, pounds 18.99) for the reduced price of pounds 15.99 (inc P&P). Phone the credit-card line on 01903 828800, or send a cheque payable to Littlehampton Book Services to: PO Box 53, Littlehampton, West Sussex, BN17 7BU, quoting reference LTTD.

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