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Senior Editor of THE WALL STREET JOURNAL
[The following article appeared in THE WALL STREET JOURNAL, issue of October 24, 1996.]
In the summer of 1991, just after my 37th birthday, I began feeling an unshakable fatigue and a persistent pain in my left side. Like most people, I had had episodes of hypochondriacould that headache be a brain tumor?but I had always been in generally robust health.
My jobmanaging a group of reporters and writing about the entertainment industry for The Wall Street Journalentailed its share of stress, but not enough to make me feel this tired. By October, I was worried enough to see my internist for a long-overdue physical. "You seem fine," he told me, "but let's do some blood work just to be sure."
The next day, as I was writing a story on deadline, the phone call came that divided my life into everything before that moment and everything after. My doctor told me that my white-blood-cell count was way too highclose to 75,000 per cubic meter of blood, compared with the norm of 5,000. He gave me the name of a hematologist he wanted me to see as soon as possible. I pressed him to give me the worst-case scenario. He said I might have something called chronic myelogenous leukemia.
Within an hour, I was in the hematologist's office, a needle being plunged into my back at the pelvic bone to extract the marrow that would confirm the diagnosis. I was only vaguely aware of what leukemia was, and that there were several different kinds, but I was about to learn fast that I had a form of blood cancer that could kill me. My only chance for a cure would be a radical and painful therapy that was itself potentially fatal.
| Theory and Rationale |
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My own mortality, something I hadn't ever seriously considered, was staring me in the face. Then I grew defiant; no disease was going to take me down so fast.
If Darwin was right, survival of the fittest would mean using any and all of the medical science and technology available to ensure that I survived.
I was about to enter what one friend described as "the netherworld of medicine." I would be given conflicting information, become all too familiar with the politics of the institutions that treat leukemia, and be forced to make decisions about complex medical matters for months to comeeven while in the throes of life-threatening sickness. If I was wrong, I would be dead wrong. My journalistic training was going to come in handy: There was an investigative story here, and my life depended on getting to the bottom of it.
The first move was to recruit a crack team to help in the research, including my mother, Beverly Landro, a nurse specializing in oncology in Pittsburgh, and Marilyn Dammerman, a longtime friend who had traded in a journalism career to earn a doctorate in biomedical science. Marilyn and my mother were able to easily access data through their professional contacts and on-line services like Medline. Meanwhile, Mike Waldholz and other medical reporters at the Journal were happy to share their sources with me.
Marilyn isn't off base in her observation that most Americans probably spend more time researching what kind of car to buy than they do investigating their health care when they get sick. And while I had a lot of help, the medical information necessary to make sound decisions is available to anyone who decides to take control of their care and do a little digging.
The first thing I learned was that my disease was in an early stage. My hematologist put me on a drug, hydroxyurea, that gave me back some of my energy by helping stem the flood of white blood cells my defective bone marrow was pumping into my bloodstream. That enabled me to continue working full time and to travel thousands of miles to visit hospitals with transplant centers.
I continued to plan for the future as though cancer would be only a brief interruption. The man I had been living with for two years, a lawyer, had provided great help and support, even working with Marilyn on the research. We decided to get married the following March.
Knowing that the therapy I would eventually undergo would leave me infertile, we entered the in vitro fertilization program at Cornell University Medical Center; after I endured a month of hormone injections, we produced nine embryos that were frozen in cryopreservation vaults.
Searching for the cause of my disease was pointless.
With leukemia, family history plays no significant part.
I hadn't been exposed to nuclear radiation or petrochemicals like benzene, two carcinogens linked to leukemia. As an infant in New Jersey, I had lived in a town crisscrossed by high-tension electrical wires, but there is no proof this has anything to do with the disease.
CML starts in the bone marrow, which creates blood cells and contains the cells responsible for the immune system. The marrow starts to overproduce white blood cells like a factory gone haywire. People can have CML for years without any major symptoms besides pain as the spleen becomes engorged with white cellsthe source of the nagging ache in my side. As a result, the diagnosis is often made in a routine physical or blood test. (In my medical reports, I was "a well-appearing female in no acute distress.")
Eventually, CML progresses to an accelerated phase, typically one to five years later. At that point, dysfunctional "blast" cells start to replace everything else in the blood. The patient is attacked by bacterial and fungal infections, and dies either from those or from a massive hemorrhage, internal or external.
| Against the Odds |
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I steeled myself for the possibility that neither would be a match. Without a sibling, I learned, I could try an international registry of donors. According to a report I dug out from the General Accounting Office, as of that year, only 13% of patients seeking an unrelated donor obtained a transplant. And everything I read warned that using an unrelated donor is far riskier to the leukemia patient.
We had always been close, but it turns out my brothers and I were even closer than we thought. By an immense stroke of luckand luck should never be played down in medicineboth brothers were identical matches to me. We decided to use Arthur, who was then 35, as my donor; Christopher was three years younger, and thus the more desirable candidate, but had recently come off active duty as a Marine officer in the Persian Gulf War. Though he hadn't been exposed to any chemical agents that he knew of, there was enough concern about parasites soldiers may have picked up in the desert to rule him out.
My hematologist, a congenial man in his early 30s, told me of several transplant centers, including the Fred Hutchinson Cancer Research Center in Seattle, whose transplant team had won a Nobel Prize for its work. The idea of going 3,000 miles from home seemed terrifying and impractical at the time, so he referred me to Memorial Sloan-Kettering Cancer Center. Only a few blocks from my New York apartment and renowned among cancer-treatment centers, it seemed ideal.
Still, I was troubled about the hospital from the start.
The atmosphere was brusque and cold. Many of the workers were unresponsive. Sickly patients were stacked up in corridors where I waited for X-rays. A pall of despair seemed to hang over the third-floor waiting room.
But the real red flag was Sloan-Kettering's poor results with CML. Like many major U.S. cancer centers, Sloan-Kettering had started doing transplants in the conventional way pioneered on dogs in the 1960s.
Patients were prepared with nearly lethal doses of chemotherapy and total body irradiation to kill off malperforming marrow, destroy the leukemic cells and knock out the immune system temporarily to prevent rejection of the donor marrow.
The gravest concern, particularly when an unrelated donor was used, was something called graft-vs.-host disease, or GVHliterally, a fight between the donor's marrow and the recipient's tissue. Even in an exact match, the donor's marrow produces immune-system T cells that don't recognize the patient's tissue and attack it as they would any foreign body. Usually, they go for the skin, the liver and the gastrointestinal tract. In its mildest form, GVH can cause ugly rashes, jaundice and diarrhea; in its most severe form, it can kill.
Convinced that stamping out GVH would give patients a better chance of survival, many transplant centers had tried stripping the donor's marrow of T cells. Sloan-Kettering had been at the forefront of this technique, had won grants to study it, and was determined to prove it could work.
But little by little, other centers had dropped the approach. Marilyn's reading of the literature suggested problems with T-cell removal. For one thing, donor marrow without T cells didn't seem to have the power to kill leukemic cells; many of the patients with T-cell-depleted marrow were relapsing within a year.
Second transplants were possible, but the prognosis for surviving such a harrowing process twice was grim.
We learned about this not from either my hematologist or Sloan-Kettering, but by analyzing the hospital's reports of its results in medical journals and comparing them to reports from other institutions. In a two-hour meeting in early December with Marilyn and my fiancé, my young doctor at Sloan-Kettering acknowledged that our analysis was essentially correct. In a subsequent letter, he confirmed that in the first group of adult patients undergoing transplants with T-cell depletion, only 50% were alive. More alarming, there was only a 25% disease-free survival rate, meaning that half of the Sloan-Kettering patients who were still alive had relapsed. (Sloan-Kettering over the next three years returned to the conventional method for most CML patients. Dr. Richard O'Reilly, head of the transplant unit, says the relapses have been treated by giving patients doses of their donor's cells, and success with that technique has led the hospital to again offer T-cell-depleted transplants to patients with a high risk of GVH.)
In late 1991, Sloan-Kettering had begun using a drug called thietepa to help T-cell-depleted transplants fight leukemic cells. There had been no relapses in patients being treated with thietepa, but the hospital had only nine months of data. We searched around for some papers on thietepaand found only one, from Italy, that covered just a handful of patients, not enough to inspire confidence.
| Vital Statistics |
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I wasn't buying that. By now, we were into a full-scale research project. I got married as planned in March; my husband worked closely with Marilyn to translate the medical jargon and evaluate disease-free survival and relapse rates at the major transplant centers.
Meanwhile, my mother canvassed the doctors she knew, and I contacted doctors recommended by Mike Waldholz and made calls to scientists whose names appeared on articles I found in journals like Blood and Seminars in Hematology. I learned that marrow transplantation was a hot field, and that whole teams were being wooed by rival hospitals.
Some experts I talked to hedged about recommending one course or the other. Others were emphatically against T-cell depletion. It was becoming clear that I had to decide between two equally scary alternatives. Did I want to take my chances with GVH and go for a conventional transplant with less chance of a relapse later? Or did I want a T-cell-depleted transplant to avoid the risks of early death from GVH only to run a much higher risk of relapse down the road? At least one transplant center was trying to find a middle ground. In April, Marilyn learned that Richard Champlin, a doctor at M.D. Anderson Cancer Center in Houston, would be speaking at Sloan-Kettering about his center's new transplant techniques. We attended the presentation, which included slides showing what GVH can do. Freddy Krueger of "Nightmare on Elm Street" comes to mind.
Like Sloan-Kettering, Anderson was looking for a way to reduce the ravages of GVH, but it also recognized the need for some T cells to kill off leukemic cells. Dr. Champlin was working on a hybrid method that removed some types of T cells from the donor marrow, but left others. I called Dr. Champlin directly, and he agreed to see me the following week. Anderson was huge, modern, impressive. I visited its transplant unit on a high floor of one wing, built, I was assured, to withstand tornadoes.
Though most hospitals isolated transplant patients to some degree, Anderson went to the extreme, placing patients in hermetically sealed rooms and allowing them to talk to visitors only via intercom phone through glass windows. As it turned out, they had been using their new technique for too short a time to be able to give me any sufficiently comforting data about disease-free survival rates.
Next, I visited UCLA Medical Center in Los Angeles. Talking to the doctors there confirmed my increasing belief that I needed to go with a conventional transplant, but I had already heard that budget cuts in the state threatened the UCLA programand the small transplant ward didn't inspire confidence. At the persistent urging of Marilyn and my husband, I had now stopped fighting the idea that I needed to stick close to home. I went back to my hematologist in New York and asked him who he knew at Seattle's Fred Hutchinson center. "I'll call Rainer Storb," he said.
In May, we flew out to meet with Dr. Storb at "The Hutch," named for the famous baseball player and coach from the area who died of cancer, and affiliated with the Swedish Hospital Medical Center and the University of Washington. Though patients were isolated, they could have family and visitors in the rooms, as long as they wore masks to avoid passing germs. My New Yorker's sense of superiority evaporated fast as I gazed at the view from the hospital: a beautiful city surrounded by mountains and water, its horizon dominated on clear days by the breathtaking snowcapped peak of Mount Rainier.
| Not Just Any Doctor |
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Like Sloan-Kettering and others, the Hutch had experimented with T-cell depletion, but "we dropped it like a hot potato because we had such a devastating experience," Dr. Storb recalls now. In our first meeting, he acknowledged that GVH posed a continuing problem, and that I had about a 25% chance of getting it. But he said the Hutch had made big advances in treating GVH and in preventing relapses after a transplant. By 1991, 70% of all patients they had treated for CML with matched sibling donors were alive and free of the disease. Even more encouraging for me, 90% of the patients in that group who had their transplants within a year of diagnosis were alive and disease-free.
I returned to New York and canceled my plans to enter Sloan-Kettering in June. I had juggled my normal life and my illness for eight months now, seeing friends, going to parties, seeing movies, and traveling to Los Angeles for business. Planning my wedding had been a fun distraction; on a typical day, working from three computer screens, I shifted from pumping a source for information, to debating the merits of T-cell depletion, to weighing capon vs. veal for my wedding reception.
Knowing that the transplant would be physically devastating, requiring two or more months in the hospital, I had stepped up my exercise program, running, swimming and lifting weights. I knew my hair would fall out after chemotherapy, so I went with my friend Nancy Kaufman to load up on headgear in a neighborhood she knew where Orthodox Jewish women bought beautiful wigs, scarves and hats to cover their hair as required after marriage. I tested physical fear; on my honeymoon in the Caribbean, I swam farther out into the ocean than I had ever dared, conquering a lifelong dread of deep water and sharks. I jumped on the scariest rides at amusement parks, screaming my lungs out.
For all the pain and trauma I faced, I could count on tremendous support from all quarters. I had come to rely completely on family and friends who put their own lives on hold to help save mine. Money wasn't the problem it often is in catastrophic illness; I had a generous insurance plan that gave me the freedom to choose my own provider. I was able to afford the travel to various hospitals, and the expense of living away from home for three months. My employers at the Journal and its parent, Dow Jones & Co., bent over backward to accommodate me.
In late June, I moved West with a full entourageboth brothers, my mother, and another friend, Deborah Rosen. We set up camp in a two-bedroom suite at a Marriott Residence Inn. My mother would live here for the duration, my father joining her when he could. Rooms were added for other friends and family as they came and went, and I would return here as an outpatient after the transplant.
In routine testing prior to admission, we hit a big snag. My brother Art's electrocardiogram showed irregularitiesnot unusual for a distance runner, which he was, but of concern to the conservative anesthesiologist, who worried that Art's heart might be at risk under the general anesthesia for the marrow extraction. Though Art manfully volunteered to undergo the surgery without anesthesia, the doctors seized on the idea of using Chris instead. By now, he was a reservist who had been back from the Gulf more than a year, working a corporate job in Ohio. A quick series of tests determined his blood was free of any contamination.
Next, the issue of total body irradiation arose. I was concerned about the aftereffects, such as secondary tumors and cataracts. Marilyn had come up with some papers reporting that the Hutch was having impressive results in a study using two different chemotherapy drugs instead of one drug coupled with radiation. The Hutch wasn't officially offering the option to all of its patients, but I persuaded the doctors to let me forgo radiation.
| The Killing Cure |
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On July 14, the pretransplant conditioning began. The first chemotherapy drug, Cytoxan, was pumped into me through the catheter. I also swallowed daily doses of five giant gelatin capsules, each containing five tiny pills of the other chemo drug, busulfan. I was instantly nauseated, and sometimes threw them right up. I was awakened one night by the blare of a fire alarm. It turned out to be a piercing ringing in my own ears, brought on by a drug used to prevent neurological side effects. I was dizzy, flushed and numb. For a while, another catheter drained my bladder continuously.
Within a week I was barely alive, unable to eat or rise from the bed, without an immune system or functioning bone marrow. Near ground zero, on the morning of July 22, Chris was wheeled into surgery. Over the next several hours, doctors plunged giant needles into his rear pelvic bone 300 times to yield a seven-ounce bag filled with red blood and milky streaks of marrow. Chris came directly from the recovery room in a wheelchair, holding the tiny plastic bag with my new life in it. We held hands as the contents slowly flowed into my catheter. It seemed unfathomable, miraculous.
This marrow was going to swim into my bloodstream, find its way into my bones and start producing billions of healthy new blood cellsand a whole new immune system. Chris lasted for half an hour before being wheeled off to his own room to pass out.
Now the hard part would begin. The aftereffects of chemo began to ravage my body. My hair, which I had cut short just before entering the hospital, began to fall out in huge clumps. A nurse shaved it all off. My mouth, throat and esophagus became so inflamed that I couldn't swallow. The lining of my esophagus was sloughing off into my stomach, and I was so overcome with nausea that I threw up bile almost constantly, causing even worse pain.
Half the time, I was loopy from painkillers. Morphine made me high for a minute, but I quickly vomited it up. A morphine substitute worked for a while, but later caused withdrawal symptoms so severe that my friend Deborah slept in the hospital room with me for two nights as I ranted like a junkie in detox. Privacy, dignity and control over bodily functions were gone. I was examined daily by teams of medical experts. Everything that came out of me was taken away to be studied. Unable to eat or drink, I was fed intravenously.
Though the liquid calories maintained my weight, my muscle tone deteriorated. I developed purple bruises around my eyes from the constant retching. The whites of my eyes were shot with the red of broken blood vessels.
I was unable to concentrate on reading, but took great comfort from the presence of my family and a few friends. I had a VCR and a compact-disk player, and a full library of videotapes and music disks. My room quickly became the favorite hangout of hospital staffers, who drove me nuts by playing over and over a CD by New Age chanteuse Enya.
Chris's marrow was starting to do its work, but I wasn't yet able to make enough plateletsthe cells that make the blood clot. As my donor, Chris could supply some of them, but wouldn't have survived the daily donations required. The Hutch staff suggested using platelets from a blood bank on alternate days. On the first day we tried, the anonymous platelets triggered a severe reactionshaking, fever, chills, a rash. There are drugs to treat such reactions, but the last thing I wanted was more drugs.
This time, my brother Art came to the rescue; since he was also a marrow match, the hospital was able to alternate his platelets with Chris's. He returned to Seattle from his office in Connecticut for several weeks, and for an hour each day, one of my brothers would sit and watch his own blood flow out of one arm, into a centrifuge that separated the platelets, and back into his other arm. (Both Newell Co., Chris's employer, and General DataComm Industries Inc., where Art works, gave each of them several weeks off to be in Seattle as long as they were needed.)
I was past the immediate hurdle of rejection or graft failure. But in the course of the next month, all the things I had read about came and got me, including GVH, which attacked both my skin and my gut. To combat it, I was pumped up with steroids, which quickly made me resemble a bald chipmunk, and with the drugs methotrexate and cyclosporine.
Meanwhile, like an AIDS patient, I was susceptible to a host of viral, fungal and bacterial infectionssome that were already lurking within me and others that might attack from outside. To hold them at bay, I was fed a steady stream of drugs with names like fluconazole, Bactrim, acyclovir and ganciclovir. The cyclosporine caused high blood pressure, which called, in turn, for more drugs. I tried several blood-pressure medications until I found one that didn't make me faint or dizzy.
Though often in a fog, I tried to talk to friends and colleagues on the phone and to keep up with work by reading stories on my laptop computer. The hardest thing about my situation was having to drop out of the life and work I had spent so much time building. I would force myself out of bed and walk, wheeling my intravenous setup around the hospital corridors. As I began to get some strength back, my brothers, my father or my friend Deborah would walk me outside the hospital to sit under a tree for a few minutes, looking like the Invisible Man in sunglasses, a yellow surgical mask and a bandana covered by a baseball cap.
At night, the only time my mother left me alone, the mild sedatives Benadryl and Ativan put me to sleep. Nurses came by every few hours to check my vitals. I showed signs of a potentially fatal liver condition, but it resolved itself. Then I developed severe mucositisanother aftereffect of the chemo. For a few days, I was producing so much saliva that it had to be suctioned off. A few days later, I was producing so little that I had to rinse my mouth out constantly with saline solution. I spent my 38th birthday having a surgical camera snaked down my throat so doctors could check out the GVH in my stomach.
| Up From Despair |
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I took up residence at the Marriott, equipped with a portable intravenous device that my mother operated to keep my fluids and drugs going. By now, the rest of the family and Deborah had gone home. My mother and I drove back to the outpatient clinic almost daily for more drug therapy and tests. I began to venture out; we took drives in our rented car and walks along Lake Washington. I was able to eat real food again. We wandered the aisles of the supermarket, my surgical mask attracting a few strange glances.
Finally, at the end of the month, I was given the go-ahead to return to New York. I took it easy at home through Christmas, but was eager to return to work. Donning my wig, I went back to the Journal in January, my catheter tubes concealed under my clothes, my drugs in my purse.
I had agreed to participate in a long-term study of the antirejection drug cyclosporine, to see if it improved long-term GVH complications. The recommended method of ingesting cyclosporine is to mix it quickly with chocolate milkwhich is supposed to disguise the hideous taste and slimy feel but doesn'tand chug it down as fast as possible, twice a day. The drug made me tired, and gave me strange tremors, high blood pressure and nauseaas well as hirsuteness. At one point, I had more hair growing on my face than on my head.
Though I was sorry to mess with the study, I made my last big executive decision and dropped out. I had already been on cyclosporine much longer than the typical transplant patient, and my doctors agreed that I was past the worst dangers of GVH. With my intravenous needs over, I went back to Sloan-Kettering for what was supposed to be an easy removal of my catheter with no anesthesia. But my tissue had knit around it. The rubber had to be nearly ripped out of me. It was a rough welcome back.
The first year was a slow process of resuming normal life, watching for my hair to start growing (it finally did) and working to regain my strength and muscle tone. My ovaries no longer functioned, and I would be on hormone-replacement therapy for the rest of my life. I returned to Sloan-Kettering for weekly, then monthly, blood tests. I was gratified when the new doctor I was assigned to there said I had made the right decision by going to Seattle.
| Clean Record |
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I wasn't out of the woods, but I was thrilled to be alive. The smallest things made me happythrowing on some clothes and ambling along the streets of New York, enjoying a fine restaurant meal, looking in the mirror and recognizing the person reflected in it. There were difficult times; my marriage ended in divorce, and we agreed not to use our frozen embryos. But while most of my friends were traumatized as they turned 40, I was thankful to get there.
Three months ago, I returned to the Hutch for my four-year check up. As my plane began the descent into Seattle, I had that familiar pretest anxiety attack. In the seat next to me was Richard Salomon, whom I married last February, and the prospect of long life had never seemed more sweet. I strained for a sight of Mount Rainier, hoping it wouldn't be cloaked in clouds as it often is. It had been a beacon of hope through the hard months here. And there it was now, rising majestically from the landscape below.
A few days later, the results of my marrow biopsy came back: negative, again. Though Dr. Storb tells me that my risk of getting the disease now is no greater than for the general population, I take nothing for granted.
Let's just say so far, so good.
Ms. Landro, a senior editor for The Wall Street Journal in New York, is author of the book "Survivor: Taking Control of Your Fight Against Cancer."
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