Chapter One: THE BAD NEWS
On the afternoon of August 20, 1991 -- my thirty-seventh birthday -- I was in my apartment in New York City, trying to muster some energy to celebrate. For weeks, I had been feeling increasingly tired and out of sorts. My parents were in town to take me out to dinner at my favorite Italian restaurant, and the following day we were planning to drive to Long Island for a family vacation at the beach, a period of rest that I hoped would do me some good. Too bad I'm not there already, I thought. I suddenly had such a crushing sense of fatigue that I decided to lie down for a few minutes.
Three hours later, it took all the strength I had just to get up off the bed again. Something has got to be wrong with me, I thought to myself as I stared at my pale face in the mirror, trying with makeup to cover the dark circles under my eyes.
But what was it that was wrong? Had I been staying out too late, not taking good enough care of myself, working too hard? My job -- managing a dozen reporters and writing about the entertainment industry for The Wall Street Journal -- entailed more than its share of stress, but not enough to make me feel this tired. If anything, life at the newspaper was energizing; I did my best work on the adrenaline of deadlines. I had always been in good health. And though I was no athlete, after years of regular exercise, I had never been in better physical condition.
Like most people, I had my share of modern day health paranoia, illogically wondering if a bad headache could be a brain tumor. Each of my father's four sisters had battled breast cancer. That put me in a higher risk category, and I worried about it. But when you came right down to it, I regarded illness and disease as the curse of the old and infirm, a vague concern for the distant future. I decided whatever was ailing me now must be some temporary aberration, a virus, something I would soon shake off.
The next day we arrived in Southampton to stay at a friend's oceanfront house. I looked forward to being outside every day -- riding my bike, running, swimming laps in the heated pool. But when I tried to exercise, the effort left me winded, gasping for breath. I complained to my mother that I had never felt so run down. As a nurse, she had always been a better diagnostician than the average mother, and she, too, was worried. "You look so pale and tired," she told me as we walked along the beach one morning. "Why don't you see a doctor as soon as you get back home?"
I promised her I would, but after I returned to work in September, things got so hectic that I put off making an appointment. I figured if I ignored it, maybe it would go away. But it didn't. In fact, some mornings, I felt as if I were nailed to my bed, unable to shake off sleep without great effort. There was a nagging ache in my left side that sometimes intensified into a sharp pain. A surge of that adrenaline would get me through the pressure-cooker afternoon deadlines at the office, but I was so spent at night that I would often have to lie down in the back seat of a taxi on the way home.
As if I needed a further incentive to see a doctor, a notice arrived in the mail from Dow Jones, the parent company of The Wall Street Journal, offering to pay for a complete annual physical as part of a new health plan. Finally I stopped procrastinating. On the morning of Tuesday, October 22, I went to see Dr. Steven Marks, who had treated me for the occasional flu or stomach virus, and I told him about my symptoms. "You look fine," he said after examining me in his office. "But let's do some blood work just to be sure."
Two days later, on Thursday, October 24, I was in my office, thinking of little else but a story I was writing for the next day's paper. The newsroom was in its usual state of contained pandemonium, reporters hammering away at their computer terminals, the fax machine spewing out press releases, the phones ringing incessantly. I was still waiting for some sources to call me back with information I needed for my story. On days like this, anyone who called me on unrelated business, including my mother, was usually dispatched with a brusque, "Can't talk now, I'm on deadline."
I picked up the phone at about 3 P.M., blanking on the name for a second when the caller said, "Laura, Steven Marks here." Realizing who it was, I assumed it was a courtesy call from the nice doctor to tell me my malaise was all in my head; I had actually been feeling a little better that day. "What's up, Doc?" I chirped, still mostly focused on the computer screen in front of me. But his tone as he answered was grave. What he was about to tell me would divide my life into everything before this phone call, and everything after.
"Well, your blood tests have come back, and there's a problem," Dr. Marks began. "Your white blood cell count is extremely elevated."
He suddenly had my undivided attention. "Like, how elevated?" I asked, feeling a prick of alarm. Dr. Marks replied that my white blood cell count was close to 75,000, while the normal level was closer to 4,000. My alarm intensified. "But what does that mean?" I asked.
"It could be an infection, but there's nothing else in the blood test that indicates that," Dr. Marks said. With my reporter's instincts kicking in, I pressed him harder. "Dr. Marks, what else could this be? What is the worst case scenario here?" I asked.
"Well," he said carefully, "I've consulted a hematologist, and he says it looks like something called chronic myelogenous leukemia." I heard the word "leukemia" and a wave of panic washed over me. I felt disoriented, and my heart started to pump faster in my chest. I wasn't even sure exactly what leukemia was, but I knew it had to do with the blood, and that it was a form of cancer. A friend's son had died of it a decade earlier after a desperate battle that took up most of his short life. "Leukemia," I repeated, then asked incredulously, "are you telling me I'm going to die here?"
"Of course not," Dr. Marks said, assuring me I was in no immediate danger. "But a hematologist I work with can see you today if you want. Why don't you get there this afternoon?" I jotted down the name and address he gave me, and told him I would head there straight away.
As I hung up the phone in a daze, I glanced up to see my friend and colleague Alix Freedman, one of the paper's best reporters and an equally good eavesdropper, in my doorway. She had been standing there long enough to hear most of my end of the conversation. "What is going on?" she whispered. I shakily relayed what Dr. Marks had said, and told her I had to leave the office right away. "I'm coming with you," she said, and ran off to call a car service for us.
Mechanically, I made the calls necessary to enable me to walk out of the office in the middle of a really important story, which suddenly didn't seem so important anymore. I called Marty Schenker, the national news editor, and told him a medical emergency had come up; he would have to find something else to fill the big space where my story was supposed to go. Something in my voice told him not to argue with me. My deputy, Dennis Kneale, agreed without question to edit any other stories that broke that afternoon. Finally, I called the executive who was the main subject of my story and told him it was on hold for today.
I gathered my briefcase, coat, and purse, and walked out with Alix to the waiting car. We headed up the FDR Drive, the quickest route to the upper East Side from lower Manhattan. Mercifully, for once there was no traffic. I stared out at the sun glinting off the familiar city skyline, the tugboats pushing barges down the East River, the graceful bridges linking Manhattan to Brooklyn and Queens. It was a perfect day, but to me everything seemed unreal. I couldn't stop tears from welling up in my eyes. "I can't believe this, I just can't believe this," I kept saying. Alix clutched my hand, trying to reassure me.
In twenty-five minutes I was in the Park Avenue office of Dr. Mitchell Gaynor, a young, soft-spoken hematologist with a calm, reassuring manner. "I'm going to repeat the blood tests and I'll need a bone marrow biopsy," he told me as he ushered me into a large examination room with a wide table in the middle. After taking off my clothes and donning a paper robe, I climbed up on the table and lay face down. Dr. Gaynor warned me that I might feel some pain, as he injected me with a local anesthetic.
Moments later, he plunged a long needle deep into my lower back at the iliac crest of my pelvic bone, then twisted it like a corkscrew to extract the marrow he needed to confirm the diagnosis. I felt a sense of extreme pressure, and despite the anesthetic, a sharp pain shot down my leg. I shuddered at the grinding sound of metal into bone; my leg jerked involuntarily.
As he worked, Dr. Gaynor asked, "Do you have any brothers or sisters?" I told him I had two younger brothers, thinking he was making polite chitchat. He swabbed antiseptic over the biopsy site, then applied a big gauze bandage, warning me not to take it off for twenty-four hours.
Wincing as I sat down in his office afterward, I listened as he told me that he would know more in a couple of days, but was fairly sure that I had chronic myelogenous leukemia. "CML is a more indolent form of leukemia," he explained; as Dr. Marks had said, the danger was not as imminent as some of the more acute forms of the cancer, and I had several options to consider for treatment. He mentioned interferon, an immune-boosting drug he had been working with that put some patients into remission. He also mentioned a bone marrow transplant, a procedure I was only dimly aware of, as something to think about down the road. He was glad to hear I had siblings; we would need to test both my brothers to see if they could provide a "match" that would make a transplant possible.
My head was spinning as I tried to take in all that he was saying. The incongruity of it struck me as almost comic. A few hours earlier, my biggest concern had been getting my story into the paper on deadline; now I was focused on the reality that I probably had leukemia, and might need a bone marrow transplant, whatever that entailed. Would they have to suck marrow out of my bones and inject my brother's, assuming it matched? I had no clue. I wasn't even sure what bone marrow had to do with anything.
I rejoined an anxious Alix in the waiting room, and we walked to my apartment four blocks away on Ninetieth Street and Madison Avenue. The afternoon had grown colder, and we dodged children on their way home from the half-dozen schools in the neighborhood. As we parted at the entrance to my building, she begged me not to be too worried, and reminded me of the words Dr. Gaynor had said as he ushered me out of his office: "You'll be fine."
But in fact, I wasn't fine. I stayed home the next morning to wait for his call, and at 11 A.M. Dr. Gaynor called to confirm that his diagnosis was correct. I was soon to learn that this form of leukemia, indolent as it might be for now, could kill me within one to five years. Nothing would ever be the same again in my life, nor in the life of anyone who cared for me. Everything I had taken for granted -- my daily concerns, my work, my well-being, my sense of my place in the world, and even my physical appearance -- was about to be taken away from me. My own mortality, something I had never seriously considered, was suddenly staring me in the face.
Though I didn't know it yet, my only chance for survival would be a radical and painful therapy that was itself potentially fatal. What I did know was that I had to find out everything I could about the disease that had invaded me, and figure out what I could do to stop it from destroying me. I was starting from nowhere, complete ignorance. I had never before been so grateful for all my years of journalistic training. There was an investigative story here, and my life depended on getting to the bottom of it.
After absorbing the news that you have cancer, the next hardest thing is telling the people who love you. You are about to rock their lives to the foundations, and drag them along with you into this uncharted territory. There's no easy way to break news like this. Trying to keep your own emotions in check while you do it can help keep the panic level down all around. If your family thinks you are dealing with it, they will at least try to deal with it too, for your sake.
My immediate family was a tight-knit unit composed of my parents, Beverly and Sylvester Landro, and my brothers, Arthur, thirty-five, and Christopher, thirty-two. I had always thought of us as an average, happy family until I met so many people who had grown up in dysfunctional homes -- then I realized just how blessed I had been. My father was cool, funny, collected, and quiet; I never even heard him raise his voice in anger. My mother, by contrast, was passionate, emotional, and enthusiastic about things. Both grew up in small towns in western Pennsylvania, my father one of nine children of Italian immigrants, and my mother an adopted only child with some Scotch-Irish roots. Thanks to the GI Bill, my dad, a veteran of two wars, got his education and a way out of what might have been a dead-end job in a coal mine. My mother, I am certain, could have become a doctor instead of a nurse had the opportunities been available to her in the 1940s.
My parents had no wealth, family connections, or friends in high places. What they did have was an unlimited reservoir of love for each other and for us, a strong sense of ethics and fairness, and a desire to see their children grow up happy and successful. They always told us that we were special, and that there was nothing we couldn't accomplish on our own if we put our minds to it. "Remember who you are," was my dad's favorite admonition.
We grew up in the middle-class suburb of Fair Lawn, New Jersey, where I graduated from high school in 1972. A few years later, when the electronics company my father worked for was sold, he decided to start his own business back in Pittsburgh, where most of our relatives still lived. There was nothing keeping him in New Jersey; Chris, the youngest, was off to college in Ohio, Art was in the Air Force and stationed in South Dakota, and I was already living and working in New York.
I still missed having my parents accessible to me in a quick trip over the George Washington Bridge, and now I had to break their hearts over the phone. On Friday, shortly after hearing from Dr. Gaynor, I dialed their number. I took a few deep breaths to try and steady my voice, worried that the minute I heard my mother's voice I might burst into tears. She answered on the second ring, delighted as usual to hear from me. "Blackie, pick up the phone, it's Laura!" she called out to my father, using the nickname that had stuck to him since World War II, when he had a thick mane of black hair. When I heard his voice on the extension, I just started talking. "Listen, please don't worry, I've got some bad news, but I'm not sure what it all means yet."
As I told them that I had been diagnosed with leukemia, my mother gasped. Recently she had become even more specialized as a nurse, going to night school for her bachelor's degree and becoming certified in oncology. In her current job, helping to run a hospice and home-care clinic for the terminally ill, she had seen some leukemia patients die. "Please don't let that ever happen to my child," she had often said to herself. Now she struggled to recover from her shock that it indeed had happened to her own daughter.
Determined not to let me see how afraid she was, she shifted into her calm, take-charge nurse mode, the trait that made my mother the best person to turn to in a real emergency. She said she would call a prominent hematologist associated with her employer, the South Hills Health System in Pittsburgh, and she asked for my doctor's phone number so she could quiz him herself.
On the extension, my father had been silent; he could barely trust himself to speak. Always of the mind that long-distance phone calls required extreme brevity, he would often call me at work, sing the first line of Stevie Wonder's "I Just Called to Say I Love You," and hang up after ascertaining that I was doing okay. Usually, when my mother and I were gabbing on the phone, he would tune in for a minute, then ring off, saying, "Talk to your mother." Now his voice broke as he said it.
After we hung up, my parents held each other and cried. "For the first time in my life, I felt as if I couldn't protect you," my dad told me much later.
Next I broke the news to my two younger brothers. They were disbelieving at first, unable to grasp that my life could be in danger. I was the glamorous, sophisticated big sister working in an office in New York, still bossing them around a little and trying to tell them how to run their lives. Nothing could happen to me; if anyone had been in harm's way, it was them -- two daredevil kids who had played tough sports, gone skydiving for fun, and headed right into the military after college. By contrast, I shunned physical risk so completely that I refused to learn to ski with them when we were teenagers. They loved hiking and camping; I liked fancy hotels and shopping. They were fearless; I was scared of spiders.
But different as we were, much of what divided us growing up was simply along gender lines; they were real boys, and I was a real girl. Otherwise, we had developed the same attitudes about most things in life, we laughed at the same jokes, and we had a fierce desire to protect one another from any threat. Art was divorced, and both Chris and I were still single; with no new family units of our own, we grew even closer to one another as adults.
Both of my brothers had been largely influenced by my dad, a proponent of military service. Art signed up for ROTC during college, then spent five years as an Air Force officer in the Strategic Air Command. Now he was working for a telecommunications company in Connecticut, traveling frequently to Europe and South America on business. Chris had just completed a five-year stint as a Marine officer, including a full tour of duty in the Persian Gulf War. After his discharge, he landed a job in Ohio working for the Anchor-Hocking Glass division of Newell Corp., a diversified manufacturing company. Both were still active in the reserves, doing their weekend-warrior thing once a month and spending two weeks a year on active duty.
The worst crisis our family had faced up until the day I was diagnosed with leukemia was the Persian Gulf War. During the seven months that Chris was stationed there, we lived our lives around CNN reports from Operation Desert Storm, trying to reassure one another that nothing would happen to him. I watched CNN all day on the small television in my office and turned it on again as soon as I came home from work, often staying up until 2 A.M. to catch the latest developments.
A few times, after a particularly terrifying report on casualties or a bombing, the phone would ring, and it would be Chris. I would be thinking about him so hard I was sure the call was the result of telepathy. But of course it was really one benefit of modern telecommunications: he knew CNN was broadcasting every minute of the war, and he was usually able to make it to some phone line to let us know he was okay when he needed to.
After he returned safely, the family was able to relax, sure that having had him in the path of Scud missiles was the worst thing we were all going to have to deal with for a very long time. But when I spoke to Chris on the phone, he told me we had to approach what was happening to me as a war too, and we must fight it just as hard. "This is just another line of Iraqi defenses we didn't expect," he said.
I was soon to find out how completely dependent on my family I was. All of them would put their fives on hold -- and even at risk -- to help save mine. We had always relied on love and a sense of humor to get us through everything. Even in hard times, we always found something to laugh about. "So, they could still call and say this was all a mistake, right?" Chris kept asking in an attempt to get a laugh out of me. But I couldn't laugh -- this was no mistake.
If I knew my family was with me, I was less certain about what would happen to the life I had made for myself in New York. I had no time to worry about leukemia; I was busy, at the peak of my career. I loved getting up in the morning and racing down to work to see what might happen that day. I had stories to write, reporters to manage, trips to take.
Besides, I had not even started to do all the other important things in life, like get married and have a family of my own. True, my biological clock was ticking away, but it wasn't too late for me, as I often told myself. Many of the women of my generation who spent their twenties and early thirties building a career were now having kids in their late thirties and even their early forties, helped by fertility drugs if need be.
But suddenly time wasn't on my side anymore. I surveyed my personal life with some dismay. Over the previous decade, I had always had a boyfriend, but most of my relationships lasted one to two years and then ended when it was clear there was nothing resembling a future there. One former boyfriend told me he thought his parents' terrible marriage had damaged his chances for being in a successful one himself. But he warned me that I might be at an equal disadvantage because my parents' strong and loving marriage had led me to have unrealistic expectations. I wasn't buying this. I still held out hope that some day I would find my true soulmate, the love of my life.
But if he was out there, I certainly hadn't had much luck finding him. My current relationship was with an attorney seven years my senior, whom I had started seeing in February 1990. Though we cared for each other, it was becoming clear that we didn't share the same goals in life or get excited about the same things. We had already talked several times about breaking up and moving on with our lives. Though we were living together, I still had kept my own apartment, and was preparing to move back to it.
Though he had been supportive and concerned the night after my appointment with Dr. Gaynor, doing his best to keep me as calm as possible and volunteering to do anything he could to help, after I got the firm diagnosis of leukemia, I was prepared for things to end between us. The last thing I needed was the further strain and ambivalence of an uncommitted relationship. I wanted to make it easy for him to just go away. "You didn't bargain for this," I told him. "But I have to focus all my energy on getting through it, and I fully understand if you want out."
To my surprise, he had the opposite reaction. After coming home from work the next day, Friday, October 25, he sat down in the chair opposite me without even taking off his raincoat. "I love you, and I think we should try to get through this together," he said to me. "Let's get married." I was stunned. It was the last thing I expected him to say. But just the fact that he was saying it had an enormous effect on me. I was in a complete crisis, and he was reaching out his hand to me. "Are you sure?" I asked. "Do you want twenty-four hours to think it over?" He had thought it over; he was sure. I felt a rush of love, relief, and gratitude, and my concerns about the relationship seemed to dissolve instantly. I said yes.
We called my family, still reeling from the news of my disease, to tell them that we were engaged. They were happy for me, as well as surprised, for they too had not expected the relationship to last. It gave us something positive and life-affirming to focus on, a sign of hope, of planning for the future. I didn't want anyone to look on me with pity. Over the weekend, as we began to tell friends about both our marriage and my illness, I would try to be droll, opening with, "We have good news and bad news."
I asked my best friend, Nancy Kaufman, to help me plan a wedding and be my maid of honor. We had been inseparable since grade school in Fair Lawn, where she lived down the block from me. We met our first boyfriends, smoked our first cigarettes, and hung out at the first shopping malls together. We attended the same summer camps and took cross-country trips together. We had cried on each other's shoulders and been chief counsel on every important decision in each other's lives. Nearly thirty years later, she was the person I knew I could call and wake up at 2 A.M. if I had to talk about something.
Nancy lived farther downtown from me now instead of farther down the block, and our hangouts had become more upscale. Instead of meeting at the mall in Jersey, we hooked up these days on Fifth Avenue. The Saturday after my diagnosis, I asked her to meet me for lunch at Bergdorf Goodman. As we sipped cappuccinos in the department store's seventh-floor café, she begged me to forget about a wedding, worried that it would exhaust me, that I might get sicker before I could pull it off. "If you are really going to go through with this, why don't you just go down to City Hall and have a quick ceremony?" she urged me. But I was determined to be a real bride. I wanted it all: the white dress, the flowers, the vows: "Till death do us part."
Families and friends are the ones you usually know you can rely on in a health crisis; it is much more daunting to contemplate the impact it will have on your professional life. After fifteen years as a journalist, ten of them at The Wall Street Journal, I suddenly felt as if everything I had worked for was in jeopardy. Learning you have cancer during the most productive years of your career is like having trained for a marathon for years, pacing yourself at a brisk clip, and then suddenly being sidelined by a freak injury while the other runners pass you by. In most cases, you have no choice but to step out of the race and then to reconnoiter if you ever hope to get back in it.
My first exposure to the newspaper business came in the third grade, after a school trip to our local paper, The Bergen Record. Afterward, my class began publishing The Little Record, a mimeographed sheet full of school news, and I was the news editor. Later, as typical of many others in my generation, I was inspired by the example of Bob Woodward and Carl Bernstein, and majored in journalism at Ohio University. In my senior year, after an internship at The Pittsburgh Press and two years on the college paper, I wrote letters to dozens of newspapers. I got one job offer: a starting reporter's job at The Hartford Courant in Connecticut, covering one of the outlying towns in its readership area.
At about the same time, however, I won an internship to work in London, one of five such internships at overseas news-gathering organizations handed out by John Wilhelm, the director of the communications program at Ohio University. The Hartford Courant told me I had to take their job right now if I wanted it. But I wasn't about to give up an internship in London, however temporary, to cover sewer and water hearings in some Connecticut town.
That decision more or less set me on the path toward business journalism, since the London internship was with McGraw-Hill World News, which provided stories and background information to a group of trade magazines, newsletters, and wire service reports. I had barely squeaked through Economics 101 in college, and suddenly I found myself reporting on the oil industry, the metal trading business, nuclear power companies, and petrochemical trading. Surprisingly I found I actually liked it; I was soon flying up to visit oil rigs in the North Sea, covering Energy Department press conferences, and traveling all over Europe to report stories.
My internship stretched out for almost a year, and then one of the newsletters back in New York that I had been reporting for on the nuclear energy industry offered me a job. It entailed more international traveling, reporting on nuclear nonproliferation talks and International Atomic Energy Agency conferences, and on the battles among environmentalists, uranium miners and processors, and nuclear power plant operators. Two years later, after paying my dues in the trenches of trade reporting, I landed a job at McGraw-Hill's flagship publication, Business Week magazine.
Finally I was working for a publication that people I knew had heard of, but I still yearned to work for a newspaper. Two years later, I found the perfect employer: The Wall Street Journal. The country's largest newspaper, it was then expanding its domain, adding social, political, and consumer-oriented coverage to its focus on traditional businesses such as steel, autos, manufacturing, and finance. In 1981, just after I turned twenty-seven, I was hired to cover a fast-growing new beat -- telecommunications, cable TV, and entertainment.
My job kept me shuttling between New York and Los Angeles, reporting on Hollywood studios that were flush with new growth from videocassettes, cable, and expanding foreign markets. There were endless tales of corporate intrigue, clashes among the big egos who ran the entertainment companies, and a steady parade of megadeals and mergers to write about.
I started a gradual shift into management a few years later, when the Journal started a special "Media and Marketing" page with a dozen reporters under a bright, respected young editor named John Andrew. In addition to reporting and writing my own stories, I helped him edit stories by the other reporters. Tragically, John died after a brief illness a couple of years later, and I was asked to take over the group. I agreed to the assignment, but insisted on continuing to report and write my own stories, which my editors were only too happy to oblige. It would mean a lot more work, but
though I had managerial ambitions, I wasn't ready to give up my byline.
Because I had set my sights on being Superwoman, it was with considerable trepidation that I called my editors at the journal to tell them I had been grounded. Would they start to worry about my ability to handle my job, I wondered; would they start thinking about replacing me? These were all completely natural fears -- no matter how beneficent an organization is, things do have to keep going. I asked Paul Steiger, the managing editor, to meet with me on the afternoon of Thursday, October 31. A week earlier he had gotten wind that something was wrong with me, having heard it from the national news editor, Marty Schenker, on the day I had to leave the office.
As I sat down with him, I was trembling from the effort of trying to remain composed. I described the situation, trying to downplay its seriousness. But I had to tell him the truth: I was seriously ill and expected to need time off, perhaps several months, to deal with it. "The most important thing I need to know is that you'll support me, that everything will be okay if I have to leave for a while, I said. I tried to be funny, adding, "Think of it as a maternity leave, only with no baby."
Paul was unequivocal in assuring me that my job would be waiting for me when I returned. But he and Norman Pearlstine, then the paper's executive editor, went even further, offering to talk to top management and benefits executives to make sure I had everything I needed. As I left that meeting with Paul, though, I fought back tears, wanting to be thought of as I always had been: tough, strong, on top of it.
In my fear, I had underestimated the paper's regard for me, as well as my editors' concern and generosity. There was a strong paternal culture at the paper -- they took care of their own in a crisis. In talking to others who have been through similar situations, I found that many companies, despite their rules and outlines for medical emergencies, disability leaves, and the like, will make special accommodations for a sick employee. Coworkers will work overtime to cover for a colleague who is ill; managers can bend the rules or put the pressure on the bean counters to do so.
When I was first diagnosed, the era of managed care was just beginning, and Dow Jones, the Journal's parent company, was self-insured, which basically meant that if Aetna, the insurance company administering our plan, said no to something, Dow Jones could overrule and say yes. In my case they would do this time and again. David Rosenberg, in our employee benefits department, would soon become one of my closest allies, running interference for me with the insurance company whenever I needed help.
Word of my illness started to leak out pretty fast around the office. Reporters are masters of gossip and in-house intrigue; there was always a buzz about someone or another around the Journal, and now it was me. One by one my reporters started drifting into my office, some awkwardly, some bluntly asking me to explain what was wrong. It had been just two years since they lost a young boss to an untimely death, and no one could believe such misfortune might strike our group twice in a row. Years of watching my aggressive style had persuaded them I was indestructible. "Not you, Laura," Meg Cox, one of my reporters, insisted when I explained the situation. "Something like this couldn't happen to you...you're invincible!"
Before I even had time to tell some of my good friends at other parts of the paper, they heard the news through the grapevine. One afternoon, Julie Salamon, the Journal's movie reviewer, knocked on my office door, a stricken look on her face. She sat down and said, "Laura, is this true? Do you have leukemia?" She told me she had been at a party the night before where she heard the news from other Journal colleagues. "I'm sorry to say it is true," I told her, trying to hide my growing paranoia that I was being gossiped about.
Though angry and defensive at first, I soon realized there was no use getting upset. When it strikes close to home, cancer is big news, even in an organization like the Journal; people have to talk about it. For some, talking directly to the victim is difficult; they don't know what to say or how to act. But there is no use trying to hide from coworkers the fact that one has cancer. One good outcome of being open is that people want to help. And that is where some of the best help will come from. Within a few days of my diagnosis I had a dozen friends both inside and outside The Wall Street Journal offering introductions to expert doctors, volunteering connections all over the place, and putting me in touch with people they knew who had been through similar health problems.
That kind of networking can prove invaluable. Joining the ranks of the afflicted is almost like joining a secret society or a special fraternity. Other members want to reach out to you, to share their experiences and put you in touch with the experts who helped them. If you find yourself in a similar position, take them up on it. Only those who have been there really know what you are going through and can offer you the proof that there is hope, that you can come out on the other side, alive and well.
One person I turned to for assistance was Michael Waldholz, the Journal's senior medical writer. "Mike, I need whatever you have, anyone you know who I can talk to about leukemia," I told him as we sat in my office the week after Dr. Gaynor's diagnosis. By the next day, he produced a stack of papers, medical journals and textbooks, and a list of phone numbers of top specialists he knew. Though he urged me to educate myself as thoroughly as possible, he cautioned me that the task of researching my disease and its treatment would be daunting, and that understanding medical jargon as a layperson would be frustrating. "You are entering the netherworld of medicine," he warned.
He had that right. In that world, I would be given conflicting and sometimes incomprehensible advice. I would soon learn as much about the politics of different centers that treated leukemia as I would learn about the different treatments themselves. I would learn about the most intricate details of bone marrow transplantation, a constantly shifting science with several methodologies that several major centers had a different approach to. In the months to come, I would have to make decisions about complex medical matters even while in the throes of a life-threatening sickness. If I was wrong, I could be dead wrong. But it would be up to me in the end: I had to take charge of my own care.
Acting strong and in control actually helped me feel tougher -- the old "whistle a happy tune" scenario -- and sometimes I even amazed myself at how well I seemed to be dealing with everything. But I had to fight every day to ward off the despair I felt inside. It helped to organize everything, to gather documents as if I really were reporting a story. I kept copious notes on everything, and amassed thick folders to keep track of everything I was learning about CML. As I took notes on things like blood counts and disease progression, I found it helped to write down my feelings and my fears as well.
"I careen between optimism and certainty that I will beat this, and absolute certainty that I won't," I wrote a week after I was diagnosed. "I must for the first time in my life bend my will toward believing that something that could go either way will in fact go my way. The best thing I can manage so far is a sort of suppression or denial. Even as I am doing all the right things I know I have to do -- the calls, the doctor visits, the research, the organization -- inside I know I am not dealing with it...it just hasn't sunk in yet. Maybe for now that is all I can deal with, all I can countenance. Take it a day, a week at a time." Denial can be a very important part of dealing with cancer -- as long as what you are denying is the possibility of death.
And in the first few days that I knew I had leukemia, I would wake up in the middle of the night, thinking I could feel the blood running amuck in my veins, the marrow churning out renegade cells in my bones. I would envision white cells zooming out like quicksilver, and try to will them to stop. In one of my darkest moments, I brooded that by Darwin's measure, I wasn't destined to survive. My body had randomly been programmed to self-destruct about halfway through a normal lifespan.
But one night, as I reflected about what a flawed specimen I had turned out to be, I began to feel angry, even rebellious. Nothing was going to take me down so fast -- I just wasn't going to let it happen. Darwin's theory needed a new interpretation, one that worked for me. Survival of the fittest for me would mean using all the information and technology available to find out how to beat this disease; it would mean taking advantage of all that modern medicine offered if I hoped to outfox death. I would defy destiny with science. I was determined to survive.
Copyright © 1998 by Laura Landro