Cancer & Me
a heartening
brain tumor survival story
This is an exciting and very positive brain
cancer story with a happy ending. A cardiologist Bernadine
healhy MD, tells the story of how she battled a deadly brain
tumor (glioblastoma) and won, using standard surgery and chemotherapy.
Don't forget what I told you on the index page: using both
chemo and alternatives might work fine and also you can use
alternatives simply to make the chemo, whatever, less unpleasant.
Most people know Bernadine Healy, U.S. News health editor,
as the former head of the National Institutes of Health and
the American Red Cross. They might not recall that she was
diagnosed with a brain tumor eight years ago. In a new book,
Healy uses her unique perspective and personal struggle with
the disease to explore the state of cancer research, care,
and treatment today-and tomorrow.
By Bernadine Healy M.D.
Posted 4/1/07
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-mali
gnant 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 cliche 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 appears in the April 9, 2007 print edition of U.S.
News & World Report.
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