Most people knew Bernadine Healy, who died Saturday, August 6, as the former head of the National Institutes of Health and the American Red Cross. Fewer knew of her struggle with brain cancer. In the 2007 book excerpted here, Healy used her unique perspective and personal struggle with the disease to explore the state of cancer research, care, and treatment today and tomorrow.
Originally published on usnews.com on April 1, 2007.
So this is how I die.
These words ran through my mind as I lay in the emergency room of the Cleveland Clinic on Valentine's Day, 1999. Only a few hours earlier, my husband, Fred, and I were sitting up in bed watching the Oscar De La Hoya fight. At some point that I cannot recall, I passed out, only to awaken with the local rescue squad standing by our bed. I soon found myself strapped to a narrow gurney in an ambulance with flashing lights, hurtling along dark, deserted streets into midtown Cleveland.
Patrick Sweeney, the neurologist who was the attending physician that evening, met us in the ER, ready to perform the usual neurological tests for what my husband believed had been a seizure. Fred is a renowned cardiac surgeon and at the time was the director of the Cleveland Clinic, but he was pure husband that night. He listened attentively to Sweeney and acted as the best of spouses would, making sure I was comfortable, squeezing my hand, and calming my nerves with lighthearted jokes: "Hey, was this just your way of getting out of watching the prizefight?"
But very shortly we found that my blackout had not been an inconsequential seizure after all. The spell had resulted from a good-sized tumor growing in the left side of my brain. I asked Sweeney if it was malignant. Leaning over the rail, peering into my eyes, he said simply, "Yes."
All I could think was: So this is how I die. Not in a car accident or a plane crash, not felled by a heart attack in honor of my own medical specialty. It would be by my own cells, mutating and roaming inside my body—in my head, no less. I felt powerless and immobile. My own life's work with the critically ill brought me no special strength or solace; if anything, I knew too much. This cancer was insidious, already having grown to a near-fatal state in my brain without ever tipping me off. Not one hint.
Looking up into the sad, drawn face of my husband, I knew that all of our medical expertise combined would not help us cope with this numbing news. No matter who we are, from whatever background, we all feel the same chill upon hearing the "C" word.
My husband got the wheels in motion. He arranged for the surgery that would be performed a few days later by Gene Barnett, his colleague and director of the Cleveland Clinic's Brain Tumor and Neuro-Oncology Center. Barnett would remove as much of the tumor as he could. Though he did not spell it out to me in detail at the time, Barnett believed the tumor was what's called a glioma. A glioma is a tumor that arises in the brain's glial cells (astrocytes and oligodendrocytes), whose function is to create supporting structures for neurons, or nerve cells. Cancers are usually graded from I to IV based on how nasty they look under the microscope. He speculated mine was a grade III glioma made up of a mix of both forms of glial cells.
I pressed Barnett as to what his diagnosis would mean for my future. His answer was sobering: With a full course of treatment, including surgery and radiation and possibly follow-up chemotherapy, I might have one or two good years, maybe more; with surgery alone, it would be less. In either case, the outcome would be improved if he was able to remove the entire tumor. But that was the rub, and a big one. The tumor was in an unlucky location: on the left side of my brain.
Like most people, I'm "left-brained." If I had to have a brain tumor, I knew from my basic medical training that having it on my dominant side was not the best news. The situation was even dicier because the mass sat near the brain's speech center. If by some stroke of good fortune my speech center happened to be located on the right side of my brain, or present in both brain hemispheres, the risk that removing the tumor could damage my ability to speak would be eliminated. So, prior to surgery, I would have a special test to determine something most of us never need to know—exactly where all my chatter was coming from.
The procedure was very similar to a coronary catheterization except that the catheter was threaded into the carotid arteries that feed the brain rather than into the coronary arteries that feed the heart. Called the Wada test, after the Japanese neurologist Juhn Wada, this clever study sorts out the activities of the right and left parts of the brain by selectively putting one or the other hemisphere to sleep. As my left brain went to sleep, I instantly went mute. I was awake, alert, focused, and trying very hard as the neuroradiologist asked me repeated questions. The words lined up in my head, wanting to be released, but instead just piled on top of one another.
I flunked the test. My speech center was located near the tumor, making the operation that much more difficult for Barnett—and yes, for me, too. One thing was now clear in my mind: However much time I had ahead of me, I did not want to wake up from surgery unable to say thank you or otherwise communicate. My husband and I, each in our own way, relieved Barnett of any urge to be heroic with his scalpel; that is, he should err on the conservative side of how much he could remove safely. As Fred put it simply: "I want my wife back."
Barnett gave me the option of being awake during the portion of the neurosurgery in which the tumor was actually being removed. By speaking aloud on the operating table, I would assure Barnett that his cutting was staying away from my speech zone. I've done a ton of public speaking in my time, but this recitation would become the most important speech of my life.
Homework. The operation began like all others, as the neuro-anesthesiologist let me peacefully doze off while trying to count to 10. This gentle sleep was abruptly broken when he brought me back to full consciousness in the midst of the operation. I had no pain, mental or physical. Barnett had already numbed my scalp with a local anesthetic and opened up a 4-to-5-inch window into the left side of my skull to expose the tumor.
My brief reverie was interrupted when neurologist Hans Luders appeared over me holding my homework—a literary passage I was to read again and again during the operation. Like a third grader reading aloud in front of the class, I tried to pronounce each word perfectly, though the words seemed odd. I asked Luders if this passage made a lot of sense to him, and he laughed. To me, it seemed out of context and very flowery, not at all a passage that I would have chosen for this critical moment in my life. But, hey, who was I to be choosy? Just as I was feeling comfortable about my ability to handle this strange experience, Barnett told me he was finishing up and all was well. He had removed about half of the tumor and had plenty of tissue for further studies.
My tumor was of the less common variety, called an oligodendroglioma, a rather obscure tumor that was just starting to make a splash because of its unusual genetics. Recent studies at the University of Toronto suggested that at least one subset of this tumor, when it carried a particular genetic profile, was surprisingly responsive to therapy—including chemo.
As the tumor diagnosis sank in, I knew the life detour that my family and I now faced would not be easy and would be drawn out. In fact, that was part of the reason I had chosen cardiology as my field of specialty and not oncology. Cardiovascular treatments seemed so precise, predictable, and relatively kind to the body. And they were just so beautifully logical: If you have a coronary blockage that is limiting blood flow to the heart, bypass it with surgery or open it up with an angioplasty catheter. If blood clots are forming, administer a blood thinner. The treatments are visible, their common-sense results almost immediate. That's what I wanted as a young doctor, and it's what I longed for as a patient as well: Lay out the treatment, get rid of the problem, and let me be on my way.
This is not the case for most patients who face invasive cancer. Cancer treatment has a risk-benefit analysis all its own; the therapy is rough and toxic to an extent that seems almost to challenge the medical precept "First, do no harm." If this is going to change, it will be for one major reason: Because cancer is a disease of genes and their proteins, we must understand their networks and interactions.
Fortunately, the revolution is already underway. The Human Genome Project was a boon for accelerating our knowledge about genes, the masters of cancer's fate. As a follow-up, the Cancer Genome Atlas will put the focus on cancer treatment, sketching out blueprints for the dysfunctional molecular networks that turn a cell cancerous. And sifting through the genetic and molecular profiles of individual cancers has exposed a big secret that misled many treatments of the past: What seem to be identical tumors under the microscope can be markedly different where it really matters, in the genes and proteins. This is a crucial discovery, explaining for the first time why a tumor melts away under a particular therapy while another of the same type is barely touched, why one tumor returns in a few years yet another disappears for a lifetime. And it is a discovery that demands a rethinking of the traditional treatment approach, in which any and all cells with rapidly replicating DNA—malignant or not—are attacked as if they were known enemies of the body. The new era instead relies upon an armory of laserlike drugs, some old, some new, some yet to be devised, that specifically target deranged genetic pathways and swoop in for the kill, leaving the innocent bystanders intact.
There's another, even subtler goal. If we can read the signs of future malignancy early enough, it should be possible to intervene in the life of misbehaving cells, reforming and redirecting them before they commit to the dark side. To be sure, we are in the early phase of this new model. In my own predicament, I was lucky to find myself, in a small way, on the initial crest.
The standard treatment for most brain tumors is surgery followed by radiation. In the past, chemotherapy has been considered a bust because of a natural protective wall, called the blood-brain barrier. Specialized cells that line the brain's blood vessels create tight junctions impermeable to all but the brain's essential shopping list of small molecules such as glucose and oxygen. This barrier, so important to isolating the brain from blood-borne disease, also shields brain malignancies from many commonly used chemotherapy drugs that might otherwise destroy them. Historically, chemotherapy for brain tumors was the "salvage therapy" when all other options had been exhausted. And sometimes, mysteriously, a tumor did respond.
I told my medical team that radiotherapy was not for me. Though this treatment typically makes brain tumors shrink and can lengthen life, long-term exposure to the radiation also puts patients at risk for memory and cognitive difficulties. That was one risk I chose not to take, a conviction formed more by the patient in me than from any bias I had as a physician. I wanted nothing more than just to be me for as long as possible—with my kids, with my husband, at home, at work. Plus as a lifelong geek, I could not bear to threaten this brain of mine that had done me so well over the years.
Unknowns. The decision was not made without a lot of thought. Each doctor on the brain tumor team—which I dubbed my "brain trust"—brought his own perspective. We all knew of studies showing that at least some patients with my tumor seemed to do well with chemo alone. But that was nonetheless not accepted therapy, as the clinic's radiation oncologist stressed to us.
Barnett acknowledged how little we knew about the unusual properties of my tumor. From his perspective, there was no real evidence to guide us to a certain path, and good old-fashioned clinical judgment and patient choice had to weigh in heavily. The neuro-oncologist who would be providing the treatment, David Peereboom, was comfortable delaying radiation if the tumor proved sensitive to drugs.
Another oncologist in my brain trust, Brian Bolwell, came at this from his experience with tumors of the blood and bone marrow. He supported Fred's and my decision all the way, reminding us that so much of cancer treatment is trial and error. It's common to change the script midway, substituting therapies based on an individual's choice, unexpected complications, and tumor response. And my tumor was not a garden-variety one with a lot of strong science behind it, anyway. So with my docs behind me, we had our plan: surgery, chemo, then patience.
A certain relief comes once the battle plan is laid out. I was fast becoming a professional patient, guided by a daily schedule of clinic and hospital stops that left little time for much else. During one appointment, I had my head staples removed; on another I had a post-op MRI. Then there were two more visits to the operating room to have special catheters installed through tiny incisions beneath my collarbones, one set to harvest bone marrow cells and then a port to administer chemo. Blood tests, mostly to monitor assorted blood counts, were regular events. My poor arms began to show the telltale needle marks and bruises of my patienthood.
I also had to get myself ready for the possibility of bone marrow transplantation. Chemotherapy drugs attack the replicating DNA of rapidly growing cancer cells. Because stem cells, too, grow and divide quickly in order to produce the ever refreshed white and red blood cells that circulate in our bloodstream, they are a primary victim of chemo's collateral damage. Since there was a promising experimental drug that was just being tested in patients whose tumors had failed radiation therapy (which my doctors thought might be an option if the first choice of chemo drugs bombed), we had to be ready. Thus, I had to bank healthy bone marrow stem cells before they got a whiff of the toxic chemo agents that could damage them.
The goal was to harvest 9 million stem cells over several days. All went well—until there were about 6.5 million stem cells. At that point, the number of platelets in my blood began to fall precipitously. I knew something was up when Bolwell appeared unexpectedly and said to stop the collection. He had enough cells to do a transplant, he said, and because I had just had neurosurgery, there was an increased risk of bleeding. Bolwell ordered a platelet transfusion as well. It was to be the first of several transfusions over the next several months.
A few days later, Peereboom loaded me down with a bag filled with carefully marked vials of pills. Oncologists are fond of administering cocktails, coded by the first initial of the name of each drug; my cocktail code was PCV, for procarbazine and CCNU (lomustine), to be taken orally, and vincristine, to be administered through the port.
During the first week of treatment, I had to go back to the wig lady to pick up my newly crafted hair. This experience was part of steeling myself for the many side effects of chemo that have become so deeply chiseled into cancer folklore and I, as I would soon discover, was no exception. My appetite dropped like a rock, along with my weight. Food tastes changed—everything I put into my mouth tasted metallic—and my skin dried up like a broken twig. As for my hair, about half of it did fall out. Occasionally I donned my trusty wig, but I never did really figure out how to keep the darn thing straight.
My first blast of chemo toxicity hit hard during the second week of therapy when I started the procarbazine pills for a two-week daily stint. Also on that day I had my first dose of vincristine. Unlike the other drugs that I could take in the comfort of home, vincristine required an in-person appearance at the cancer center. Whatever their value would be, these drugs didn't seem too bad—until later that night. A little after midnight, nausea, dry heaves, and vomiting hit suddenly, and they recurred like clockwork every 45 minutes, untouched by the standard antinausea medicine I'd been taking. Exhausted, I would fall asleep as each wave passed, but unfairly so, as my husband, who had a job to go to in the morning, was awake all night. This happened for several nights in a row as my body reacted, relentlessly and rhythmically trying to reject the toxic stuff seeping into it.
I vowed to take the heavier antinausea medicine. After that, queasy was the worst of it—and I have never been so grateful for queasy. How awful chemo must have been before the discovery of these more powerful medicines. The newer but more expensive drugs gave me, as they give many, a semblance of normalcy during a long stretch of toxic treatment.
There was something even more powerful that helped me get through this medical annus horribilis. The gene analysis showed my tumor matched the profile of those in the Toronto study that responded to chemotherapy. I wondered how it would have been had I gotten the opposite news. I would still want to know, I decided, but why, when it would only be a downer? I guess because I was already steeled for getting less favorable news, which I think is common when people first confront a cancer diagnosis. Perhaps a less positive gene reading would have influenced how I spent my time or increased my resolve to move sooner to more aggressive, experimental chemo with a bone marrow transplant. Maybe I would have opted for a lighter work schedule. But then again, maybe not—kicking back wasn't appealing under any circumstances, least of all the current ones. My family had to carry on with their lives, and I drew strength from knowing that I had to do the same.
I had my MRI scan after the first cycle of chemotherapy. It seemed as if a world of time had filled the eight weeks since my diagnosis. I was back at work, and life at home had settled into its old routines. I had successfully weathered one bout of bone marrow toxicity that troubled my bone marrow expert more than it did me. Relieved and hopeful, I felt that I could do this treatment and still carry on with my life as if I were entirely well.
But scan time brought me back to cancer's reality. My doctors warned me not to expect too much improvement after just one month of treatment, but this scan was still a kind of reckoning. There I lay, head rigid, arms fixed, eyes staring upward with nothing to see, encased in a sleek white sarcophagus.
I promptly came to life as the noise ceased and I was motored out of the narrow tunnel. There was my neurologist, Pat Sweeney, standing in the doorway right next to the computer console where the neuroradiologist was studying the scan. Sweeney flashed a big smile and held both thumbs up. I had won a reprieve. The drugs were working sooner than expected, and the second cycle looked like no big deal.
Speed bump. But things don't always turn your way in medical treatment. I hit a big speed bump early in my second cycle when I had a second and more serious run of bone marrow toxicity. Though I felt well, I popped an antibiotic to ward off infection, monitored my temperature, and gave in a bit more to the nagging fatigue of severe anemia. But I was buoyed by an even better MRI after cycle two, which showed that the tumor was seriously on the run.
My marrow, apparently, did not share my joy and refused to bounce back. Any more exposure to these drugs, and I ran the risk of doing to my marrow what I hoped to do to my cancer, turning marrow-filled bones into barren cavities. Here I was with a chemosensitive tumor that was melting away, and I could no longer take the miracle medicine that was doing the trick.
But by sheer luck something else was happening. Temodar (temozolomide), the new drug developed by Schering-Plough, had just gained Food and Drug Administration approval for use in brain tumors that had failed to respond to other treatments. It had a special knack for crossing the blood-brain barrier. And, crucially for me, Temodar delivered less bone marrow toxicity than PCV. I became one of its earliest users, and for the next year my scans steadily improved. Now this drug is recognized as a breakthrough in brain tumor treatment and is the first drug to be used routinely early in the treatment of glioblastoma multiforme, the most severe and common of the malignant brain tumors. For other, less common gliomas, like my oligo version, it's now standard care.
To be sure, news of cancer close to home is wrapped in sadness and anxiety, both for the patient and for the family. But like birth and death, this is one of the few life experiences you fundamentally face on your own, for however many loved ones are around you, the cancer journey is essentially a solitary one.
Treasuring the moment at hand is what lifts the spirit. Dismiss it as cliched talk if you will, but to those threatened by a grave illness, every day of just being takes on a new light. Surely you wonder how you could ever complain again—about a rainy day, a broken piece of china, or someone's unkind words. Though that feeling of equanimity salves the cancer shock, it can also linger in the consciousness and become a subtle yet permanent state of being. I catch myself when I get too caught up in some silly little thing; I remind myself, What am I doing? How lucky I am to be here.
From LIVING TIME: Faith and Facts to Transform Your Cancer Journey by Bernadine Healy, M.D. Copyright © 2007 by Bernadine Healy. Published by arrangement with the Bantam Dell Publishing Group
This story appeared in the April 9, 2007 print edition of U.S. News & World Report.