By Drew Silvern
UNION-TRIBUNE STAFF WRITER
August 20, 1996
Feeling stronger, Drew become more assertive in directing his treatment. He grappled with conflicting medical views. He researched alternative therapies, some of which are scorned by Western medicine. He know he had few options. Which one could lead him to survival?
That’s the word that pierced the darkness in my apartment 29 months ago when a neurosurgeon called to tell me I had brain cancer.
I was alone. Once he said cancer, everything else sounded like “death sentence.”
Since then, treatable has meant surgery, radiation, MRI and CT scans, hormone injections, chemotherapies, and dozens of blood tests and transfusions.
Treatment has been like a grandfather clock that’s strapped to my back and controls my daily, weekly and monthly schedules.
When things have gone well, it’s felt as if I’m liberated and walking downhill. When they go badly, I’m struggling up a stairway.
At times I worry I’m just trudging back and forth between treatments, eating up time, and the clock eventually will wear me down and crush me.
That’s true now more than ever, since an MRI (a high-tech magnetic image) in June revealed that my cancer, twice removed, is back.
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My first cancer surgery took place on April Fool’s Day, 1994, and took eight hours. For me, it seemed as if one moment I was in an operating room so full of stainless-steel tools it looked like the back room of a butcher shop, and the next I was on my way to intensive care, begging for ice chips and a hand to hold. My tumor is in the cerebellum, an area at the lower rear part of the brain that’s thought to control fine coordination. To reach it, neurosurgeons had to pry a series of large neck muscles apart, chip away at the bone, and finally, cut through the membranes that cover the brain itself.
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One hears lots of learned and dire predictions before brain surgery. There are so many important control mechanisms lying in such close proximity. One slip of the surgeon’s hand . . . maybe you lose the ability to write or hold things, or to move them about smoothly. My abilities to walk, run, drive, or write in a normal way were at risk, I was told.
I had an MRI two weeks ago, after most of this story was written. I thought it would be my final one. . There was the chance that doctors might sew everything up tight and then a blood vessel somewhere would start to bleed, and the pressure could be fatal.
None of that happened during that first surgery.
Recovery was quick. I was walking in 24 hours. And home in 36.
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The approach was much the same the second time around. The tumor recurred last December in the same place, and despite several months of chemotherapy, it continued to grow. My symptoms were similar to the first occurrence, only more noticeable. There was a slight sense of nausea and disorientation. I felt as if I was navigating just a little off course.
Having already been tinkered with, irradiated and “chemoed,” the areas of my brain around the cancer might be more sensitive to an operation, my UCSD neurosurgeon, Dr. Hoi Sang U, told me. There was a higher risk that I might lose coordination, and it was likely the recovery would be more difficult, he said.
Still, I had few options. The hope was that the surgical removal of the tumor would buy time for doctors to find a chemotherapy drug that would permanently cure the cancer. Then I might qualify for a bone marrow or stem cell transplant, two techniques used increasingly to fight and cure cancer.
When I awoke after the surgery and was on the way to the intensive care unit, I found that my limbs and fingers and the left side of my body (the side controlled by the area affected by the tumor) still worked.
I thought my bad luck of several months had changed.
Then came a small leak of cerebral spinal fluid and two weeks in the hospital spent struggling to overcome meningitis and pneumonia infections, and an MRI showing that my cancer was back. Bigger than ever.
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I had my first radiation treatments in 1994.
I’d leave work once a day to visit the radiation room in UCSD’s Hillcrest Medical Center.
My memories of this place are of a large, institutional room in the basement where, over the course of five or six weeks, one can come to recognize every spot and smudge on the wall.
There were few physical sensations at first, just a brief and unexplained sour-milk smell and a 10- or 20-second buzzing sound.
The whole radiation experience struck me as one of submission — to cancer, to high-tech medical care, and the power of doctors to administer it, and to the desperation of patients.
I don’t have a cogent explanation for those feelings. Maybe it came from lying on the table, alone in the room under a giant machine, offering myself up in hope of being cured by some invisible, mysterious and potentially dangerous energy source.
Maybe it was as simple as having to show up at the same place every day, ready to be made ill by a treatment for a disease that I thought had no place in my life.
It took a few weeks to see why so many people speak ominously of radiation. My hair fell out. I first noticed it as locks drifting down toward my feet. A few days later it was coming out in big clumps.
It was summertime and I was too embarrassed to go swimming anywhere, because I’d leave a trail of hair behind me.
I’d see the same people in the basement waiting room every day, most older than me, all of us seeming to deteriorate at a fast pace. Many had skin that was red and burnt from the radiation. If anyone talked, it was about how many more treatments they had left. Usually, the waiting room was a hushed place of nodding recognition.
Everyone seemed eager to get their treatment, go home and get the nausea over with.
Later, just the smell of the hospital or any scent reminiscent of the laundry soap used on the hospital gowns made me want to vomit. It still does.
Toward the end of my six-week treatment, I felt as if I was dragging a ball and chain. Every day the burden got bigger. The fatigue was so great that I felt as if I was walking in the shoes of an 85-year-old man.
Chemotherapy has been a different experience. Sometimes tame, other times wicked. In my life as a cancer patient, I’ve taken numerous drugs. Some damaged nerve endings, numbing my hands and feet and making me permanently hard of hearing.
There were times, early on, when the chemotherapy seemed to be working, and my MRIs were clear and I was symptom-free; on my way to being cured. Then, for most of this year, nothing worked. Every treatment and every MRI brought bad news and heavy sighs. I’ve felt I was sinking in quicksand.
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I used to have a metaphoric image of medical care being similar to those “good hands” insurance commercials on television. When I was sick, and heading to the doctor’s office or the hospital I’d envision climbing into those soft, relaxing palms and letting someone take care of all my problems.
There’s always been a sense of comfort for me in that image, from believing, almost blindly, in the treatment prescribed by a doctor. He would know what to do; she would have the answer to my problem. My job as the patient would be a straightforward one of accepting the treatment and weathering any discomfort.
It’s an attitude that’s probably a legacy from a childhood of “Marcus Welby” episodes, and it’s been especially true since I’ve had cancer, which is so much more mysterious and ominous than most illnesses.
To a degree, I’ve tried to keep information about my cancer at arm’s length, to cultivate a certain amount of ignorance.
It’s been a shield — one to keep my fear at bay. A version of the adage that “what I don’t know can’t hurt me.”
Every once in a while I try to read articles or search the Internet for information about brain cancer, but as soon as I find something pertinent, I know just why I’ve limited most of my reading this year to novels. It’s just too difficult to read medical articles that talk about patient outcomes, when you realize an “outcome” refers to a life like yours.
Often it’s been easier for me to write about my fear than to read or learn about my cancer.
(I did consult a neuro-oncologist at the University of California San Francisco after my first surgery. He confirmed the diagnosis and first-treatment protocol of my doctors here.)
For a long time, I’ve been like a mule as a cancer patient, putting one foot in front of the other on the survival trail. I felt as if I’ve received the best of care at UCSD, and have forged strong relationships with all who’ve treated me. Until I learned of the recurrence in December, I felt I was cruising toward the finish line where the ribbon said “cured.”
My cancer recurrences have changed that perception. The terrain looks far more perilous now.
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I went to see a new doctor in June.
My friends and family urged this on me. I had just recovered from my life-threatening infections, was out of the hospital, only to find that my tumor was back.
I needed opinions, a new direction, those close to me said. It was the logical and rational thing to do. It was like my body was a talented baseball team doing badly at midseason. Something had to be changed.
Nothing was working for me and there was a sense of desperation in the dugout.
For two years, I had been in good hands, cancer-free, almost enjoying my new life and perspective as a cancer patient. Suddenly, in November, it felt as if I had been dropped on the pavement on my head. Everything since had turned out wrong.
While I had been in the hospital, two colleagues had even surveyed national cancer centers, looking for specialists in medulloblastoma (which is primarily a pediatric tumor, rarely found in adults).
One of them, Dr. Henry Friedman, a pediatric neuro-oncologist at Duke University in North Carolina, had an impressive record treating children with medulloblastoma, and a much smaller, albeit equally successful program treating adults.
I went to Duke to visit him. He said he still thought I could be cured by using a very high-dose chemotherapy regime, followed by a stem cell transplant.
Similar in theory to a bone-marrow transplant, a stem-cell transplant operates on the basic premise that after removing from the blood the precursor cells of the human immune system and freezing them, oncologists can deliver a chemotherapy drug dose potent enough to kill all rapidly dividing cells in the body (among them, cancer cells). Once the cancer cells are poisoned, doctors reinject the precursor cells — which have been kept safe in the freezer — into the infection-susceptible patient, who’s been isolated in a hospital, and everyone lives happily ever after.
My longtime UCSD neuro-oncologist, Dr. Marc Chamberlain, has also advocated chemotherapy and a stem-cell transplant as my salvation. He believes a smaller chemo dose might be safer and more appropriate.
Talented doctors can be like big dogs. Once they get ahold of something, and focus, they don’t let go easily.
In the last month. I made myself something of a bone, and have been chewed at both ends. I have no doubt that Chamberlain, Friedman and others involved in my care have my best interests at heart. And yet now that Chamberlain and Friedman are acting more or less as consultants, with me in the middle making the decisions, they’ve each, in their own way, snarled a bit while trying to mark their territory.
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It has been difficult for me to seek a new direction in my treatment, and to be the person making decisions about my care.
I think so much of healing as a byproduct of faith, and for me, as irrational as it may be, faith is harder to have when you approach treatment options as a steely-eyed consumer. That’s the way I feel now.
It’s also hard to listen to the advice of cancer specialists that I like personally, without feeling as if I’m disrespecting one to take the advice of the other.
I feel unknowledgable and gullible, and at times just don’t feel as if I have the energy to know what sounds most reasonable.
Sometimes I simply feel like a jerk for not knowing what to do, or for canceling a treatment at the last moment, because suddenly I’m swayed by a piece of old or new advice.
I try to console myself with the thought that every doctor has a retinue of future patients awaiting them. I just have my one life to look after, and try not to worry about making waves.
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Of course, cancer treatment in the 1990s is not just about medicine. It’s also about referrals and approvals and HMOs and insurance companies.
I’m not yet sure how these forces are impacting my treatment.
Sometimes I feel like a lottery winner, having paid much less into the medical-insurance system than the astronomical costs of my surgeries, chemo and radiation and drug treatments.
I’ve also read about people like me not faring well when it comes time for high-tech treatments like stem-cell transplants. Though the treatment is becoming more common for those with other cancers, there are so few adults with medulloblastomas (a few hundred a year nationally, I’m told) that insurers say it’s impossible to know the efficacy of the treatment. The studies just aren’t there, they say.
I don’t know exactly where I stand in this process, as these procedures are still weeks, months and lots of good luck away, but my care-givers always look crestfallen when the subject comes up.
As a patient, it’s hard to slog through so much treatment and discomfort to find a drug that might kill your tumor, then think you may be denied a potentially life-saving treatment because a group of insurance-company consultants thinks there’s no solid proof that a treatment will work.
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Since my tumor recurred, I’ve also spent more and more time trying to learn about alternative therapies.
I’ve read about the many diet-based approaches to curing cancer, the value of coffee enemas, juicing, macrobiotics, camphor injections and the anti-neoplastons of Stanislaw Burzynski.
Burzynski, a Houston-based physician and biochemist, has been in the news lately for his theory that there is a kind of parallel immune system in the body that’s built on a class of proteins he calls anti-neoplastons, which can reprogram cancer cells and render them harmless. The Federal Drug Administration disputes his claims.
With each potential cure comes a list of anecdotes and testimonials from people who are certain they’ve been saved.
I have no doubt that anyone who believes these therapies have cured them may well have been cured. I envy them.
And yet, I’m chafed by brochures and information kits from clinics that rely on the stories of survivors to communicate the effectiveness of their treatments.
Often the anecdotes are dated, and the information packets come with travel-agency brochures. Rarely is there information about those who weren’t saved.
Still, I’ve gone to a doctor of Oriental medicine for acupuncture, and I’ve been to faith healers. My belief in prayer has increased. I meditate.
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I had an MRI two weeks ago, after most of this story was written. I thought it would be my final one.
In recent months, my body had been bruised by procedures and infections and infected procedures. I haven’t been doing well.
I have drug-induced diabetes that has blurred my vision and added to my fatigue and dizziness. Walking up and down the stairs in my house has been an ordeal I choreograph to minimize fatigue.
When I went to the hospital for my scan, I was sure I would leave with a few doleful looks and would go home to lie down and figure out what one does in such a “I’m sorry, there’s nothing more to do” situation.
I was wrong about my scan. My tumor had shrunk.
That was great news.
My friends and my family have rejoiced. Friedman says it’s proof that his high-dose chemotherapy is the way to go. Chamberlain has new ideas on how to effect a cure.
Still, I don’t know exactly how I feel.
Before my MRI, I wondered secretly if my travails of recent weeks were indicative of the way people die from cancer. Pulled down gradually by an onslaught of nagging physical problems, things that weigh so heavily that one day you just don’t get out of bed. Sleeping feels so good you just can’t get enough.
At my core I don’t feel physically or emotionally ready to give up my fight, but I’ve wondered whether I’ll have a say in the matter.
I’m disappointed that I’m not euphoric about my shrinking tumor and that when I look in the mirror I see a cancer soldier with a thousand-mile stare, not a poster boy for how to survive a brain tumor.
I want to take a vacation — from my cancer and my life — and go somewhere fun, but all I can see ahead is more treatment. I dread choosing the next protocol, or trying to anticipate the next infection.
Which isn’t to say that, as contradictive as it may seem, I’m not glad to feel as if it’s time to start getting out of bed early again, strapping on my compact-disc player and taking my dog, Beasley, out for his walks.
My scan may mean there’s a light at the end of the tunnel.
And for the first time in a long time, I can wonder when my treatment will end and if I’ll regain my position of even a year ago, when I was a cancer patient on cruise control, heading toward “cured,” one day at a time.
In March 1994, education reporter Drew Silvern was diagnosed with brain cancer. After undergoing surgery, radiation and nearly a year of chemotherapy, he thought he was cancer-free. In December, the tumor returned. This is another story in an occasional series on living with cancer.
Reproduced with permission from the San Diego Union-Tribune.