By Drew Silvern
UNION-TRIBUNE STAFF WRITER
April 7, 1996
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 1995, the cancer returned. This was the first in a series of seven stories chronicling his life with cancer.
When I began this story, I thought I was dying.
Now, I’m not so sure.
That’s what my life with my brain cancer is like. Especially this, the second, time around.
My days begin with a calculation: Am I feeling better than yesterday, or worse? Is my chemotherapy working, is the tumor in my head getting smaller, or larger?
The answer is rarely static and often changes several times a day. The only sure thing is that it takes sleeping pills to end the process each night.
It’s a strange way to live. All cancer patients probably feel that way. It seems a particularly bizarre circumstance for a 35-year-old, never-married journalist, whose life seemed to be going so smoothly.
Living with cancer means living with many things. Some are blessings, others inconveniences. A few are horrors.
At times I liken cancer to having a distant and bizarre relative move into the back bedroom of my life.
It’s always there, making its presence known in a hundred subtle and not-so-subtle ways. Cancer has been a teacher at times, and a disturbing and unwelcome visitor at others. It’s a roadblock between me and a “normal” life and thoughts of the future. It’s a valuable reminder to cherish the uniqueness of each hour of each day.
I don’t know when, or if, it’ll leave, or what toll it will exact before it goes.
So I struggle — to accept the blessings and sidestep the discomfort, to retain a sense of curiosity and joy for the world and the people and things in it, and to avoid being swallowed whole by thoughts of illness.
And always, I wait for another shoe to drop. Will things get worse? Will they get better? Can I stay hopeful, or will I fall down a slippery slope of terror and slog about, worrying that I might die young.
■ ■ ■
I thought I had a bad sinus headache. That’s how it started. One night while I was at a classical guitar concert it was just there: a bad headache.
Over the next few days it wouldn’t go away. It was only severe for the first few hours, then for several days it lingered, subtly, in the background.
It wasn’t incapacitating, but I couldn’t ignore it. It was accompanied by a strange feeling that somehow I wasn’t exactly sure just where my left foot hit the ground when I took a step.
My doctor thought it was a sinus infection, or maybe a vision problem. When a week’s worth of antibiotics and an eye exam failed to fix things, he sent me to a neurologist.
Overkill, I thought. But I went anyway.
The neurologist pushed and pulled this limb and that, watched me walk, and said everything looked good. Still, she wanted a CT scan (a sophisticated X-ray) to confirm her suspicion that it was indeed a sinus problem. “Brain tumor” came up only when I asked for a “worst case” scenario.
A week later, when the radiology technician finished the scan and offered me a coupon for a free lunch in the cafeteria, I began to worry.
Results of the scan were supposed to take a week to process, but now they were suddenly available the same day. The neurologist, who was supposed to be unavailable that day, was unexpectedly in the office.
Have lunch, said the technician, and the doctor would see me when I was done. It was the last lunch of my regular life — that’s the way I think of it now — and I was too nervous to have anything but soup and yogurt.
When I was summoned back to the imaging office, the doctor was talking on the phone with my general practitioner. They were chatting about family, which I took to be a good sign for me. I’d expected a somber face, and maybe grave tones. Her expression didn’t change when I walked in. I eased up.
There was a tumor, she said, in the cerebellum — an area in the rear and lower part of the brain which controls muscular coordination.Not to worry too much, she said. The areas that control cognitive skills and emotions — the human things, the “me” in me — weren’t threatened, she said, and the tumor was at the lower rear portion of my brain, next to the skull. It would be easy to remove, she said.
The surgery didn’t have to happen right away, but sometime in the next week or two would be OK.
I felt, in a strange intellectual way, that I should fall apart, get hysterical right there in front of her. That’s the way you’re supposed to react to these things, I thought. Shock. Anger. Fear. Denial. I felt none of those.
A little voice inside demanded tears, shaky legs or a loss of consciousness — at least one would be a sign of a healthy, normal response — but I was silent.
In truth, there was a part of me that felt fascinated and excited, maybe even privileged, as if I had been selected to take a special journey, one the insurance company would pay for.
It still feels that way sometimes, as if I’m having an experience none of my friends can match. A dangerous adventure. Something to dazzle people with at dinner parties. I’m the glamorous patient, the death-defier.
Perhaps I was lulled into a false sense of security by the confidence of the neurologist, and later the neurosurgeon, that the tumor appeared to be benign and easy to reach. My fear on that day and those leading up to the operation focused more on a slip of the knife than on the threat of cancer.
The overwhelming odds were that a young, healthy person like me would be back to normal in a few months, they said.
I worried, but not like I worry now.
■ ■ ■
I’ve become a collector of my own cancer anecdotes. Every now and then a thought or event strikes me and stays with me. Sometimes because they’re funny or ironic, others because they crystallize a moment of fear and stab me like an ice pick.
This is a favorite: My father, whose greatest talent has always been emotional denial, has dealt badly with my cancer. I press him to acknowledge reality, that I might not survive, and he insists he can’t bear to imagine it. I believe him, though it makes my life more difficult to have to work around his inability to cope.
If I die, he says, he’ll follow me in a matter of weeks or months. He’s 72.
It’s a threat, I tell my friends, that almost ensures my survival. No task would be as onerous as introducing my dad to God and the inhabitants of heaven.
Seven days after the operation — it took place on April Fool’s Day — my big adventure turned perilous and the route back to my “normal” life disappeared like a mountain trail in a mudslide.
The surgeon called just after dark on a Thursday night. I was alone in my apartment. I hadn’t thought much about the pathology report, or why it was taking so long to get confirmation that my tumor was benign. My big worry was making sure I didn’t run out of painkillers.
At first I couldn’t understand why he was telling me about all sorts of different tumor types — this “oma” and that. He was supposed to say, “Everything’s OK, you’re in the clear,” and hang up. But when he mentioned me and the words “medulloblastoma” and “treatable” in the same sentence, time stopped.
He had a soft, accented voice, but suddenly it struck me as if a two-by-four had hit me in the stomach. “I’m going to die of cancer?” I wheezed. “Now? This is a death sentence, isn’t it?” I couldn’t breathe.
I don’t know what he said after that, other than it was clear he didn’t know what to say or how to say it. There was something about it not being a death sentence, but that he didn’t know any specifics of treatment or survival, and that he would try to page the neuro-oncologist who would be taking over my care and have him call me at home.
When he hung up I was standing in a dark kitchen feeling as if I was falling down a dark hole. The most completely bad thing that could ever happen to me was happening and there was no one and nowhere that I could turn for a solution.
There was no parent, no expert with a cure, no appeals board. What would happen to me — however awful — would happen, and there wouldn’t be much that I could do about it.
In the weeks after the surgeon’s call, I thought him callous and insensitive for delivering such awful news over the phone, at night, when I was alone. Later, I learned there were even worse ways to hear the news, like when the chief neurosurgery fellow who was removing my stitches casually asked if anyone had told me yet that the tumor had turned out to be malignant.
When I think about it now, though, I wonder if there’s any optimal way to learn you have cancer. In an office, with my family or friends around? I don’t think it would have made much difference. I still wouldn’t have been able to breathe. At least I got to gasp in privacy.
■ ■ ■
People like to tell me how I have to “fight” my cancer. “You’ll beat it,” they say.
The last and only fight I ever had was when I was a 10-year-old. I had to have a friend help me. I was big and athletic, but I was never a fighter. I’m still not.
No, I think I’ll just focus on outwitting and out-willing my cancer. I think the point is to outlive it, not bruise it.
■ ■ ■
The things they don’t tell you. Two weeks after the operation my wound became infected. It didn’t seem like a big deal to me — I felt fine — until the neurosurgery resident who admitted me to the hospital mentioned that I was missing the back of my skull and, without it, I was at risk for the infection to spread into the brain itself.
Was I naive to assume that the surgeons would put my skull back together the way they found it, or that at least they would warn me before they operated? I guess so.
Later, they told me that they had to chip it away, and that because the neck muscles in that area are so big and tough, it’s plenty safe to go skull-less there.
■ ■ ■
In a way, cancer did mean death for me. But not the kind I feared. At least not yet.
It meant death the way some people see death in the aftermath of a forest fire. Cancer burned away the emotional deadwood that a life accumulates over time. Whatever self-doubt, anger or pretension that had accrued — and it was quite an entangling mass — seemed to go up in smoke.
Cancer ended what I now think of as my first life, just as its recurrence ended a second life. It’s given me a raw appreciation for life I’m sure I never would have felt without cancer.
A brief history of my first life goes like this:
I grew up trying to be the perfect child in a dysfunctional family. I was the high school star, voted Most Likely to Succeed, the Stanford University graduate, the guy who was committed to being a doctor and saving the world.
It wasn’t until my mid-20s, when I was in the first year of medical school, that I allowed myself to realize I didn’t want to work with sick people, and that the creative voice I had so long suppressed needed air.
Everyone I knew, except a few close friends in medical school, thought I was crazy when I took a leave of absence, and eventually dropped out.
I had no idea what I was going to do, just a vague sense that it would involve writing. I worked in a cheap “welfare” hotel in Seattle for a while, then a department store in Los Angeles. I wandered within myself.
Therapy, growth and graduate school got me to my 30th birthday.
By the time the cancer came, I was just starting to get warm and cuddly inside my own skin. Professionally and personally, I felt like the outer me was coming into alignment with the inner me that I had always tried to suppress.
In a way, my cancer came along at the worst possible time, and maybe the best.
It made the past the past and the present the present. It healed most of the old scars and propelled me beyond regret or family resentments. It brought a clarity of purpose to my life and a sudden ability to “see the glass as half full.”
■ ■ ■
It scares me when someone tells me how nice I am, or that I’m a good writer or an inspiration in how to face adversity. I start to think how that would look in an obituary, and what people would say at a memorial service. “Why is it that the good ones die young?”
■ ■ ■
Don’t let me fool you, even if I try to fool myself sometimes: Cancer’s cancer and even if it comes with blessings, it’s no fun.
Learning you have cancer feels like you’ve fallen into a bottomless pit. For me, at least, that pit has become more a tunnel toward what I’ve interpreted as new lives. But it hasn’t been a comfortable journey.
After the surgery, after the infection, there were six awful weeks of head and spinal radiation. Each treatment meant a trip to the radiation oncology department in the basement of the UCSD Medical Center in Hillcrest, where they have a huge machine called a linear accelerator that, in less than half a minute, can age you five years.
That’s what radiation’s like. Each daily zap takes less than a minute, and turns you into a nauseous and rickety mess.
The nausea would come late in the day. Toward the end of the treatment, the radiation of my spine had so irritated my mouth and esophagus that I subsisted, uncomfortably, on Popsicles, which I would eat after swallowing a concoction of lidocaine and Maalox. Walking from the Union-Tribune parking lot to my desk, I felt like an 80-year-old with a heart condition trying to climb a mountain.
Even now, just the thought of the UCSD basement makes me feel sick. Sometimes when I use soaps that smell like those used on hospital gowns, I immediately want to gag.
Later, there was chemotherapy, and hours and hours spent sitting in a chair getting toxic chemicals through an intravenous line.
The thick, curly, black hair that was an inheritance from my grandmother became a distant memory with chemotherapy. I became a cue-bald connoisseur of needle sticks and printed bandanas. If I wasn’t having a blood test, I seemed to be having chemotherapy or injecting myself with a synthetic hormone designed to inspire my bone marrow to work overtime at producing enough white blood cells to keep me infection-free.
I have no way of knowing how my experience compares to that of other cancer patients. Not because I haven’t spent hours listening to their individual stories, but because the only constant is that, deep inside, physically and emotionally, we all feel things so uniquely, so personally.
I know people who have been badly disfigured by cancer, and others who live — I don’t know how — in almost constant pain. Once in a while I feel like I’ve suffered, a little. But when I think of these friends or acquaintances, I think they must really know what it feels like to have cancer, and I just think I do.
■ ■ ■
This is my most cherished cancer memory. I was lying in the intensive care unit after my eight hours of surgery, sucking ice chips and feeling like someone had parked a dump truck on the back of my neck.
My father and brother were hovering around my bed, with such furious looks of agitation and worry, questioning every beep and burp of the surrounding machinery, that it was making an uncomfortable situation unbearable.
I ordered my mother to make them go away to a movie and give me and my nurses a few hours of peace. Five minutes later my brother was back to tell me they had picked out a movie, but needed me to give them directions to the theater.
People manage in the strangest ways to tell you how much they need you.
■ ■ ■
In the summer after my surgery, and interspersed through a year’s worth of treatment, I managed at times to have the energy to backpack alone in the Sierra for a week, to organize a river-rafting trip with friends and to take several ski trips.
I bought a Labrador retriever puppy. I named him Beasley. He grew. We walked.
And walked. We graduated from obedience school with honors.
After a month I came back to work, doing my normal duty as an education reporter.
I joined a weekly support group at the Wellness Community, an organization devoted to helping people like me survive by providing a forum for cancer patients of all stripes to share the thoughts and emotions that need expressing, but don’t usually go over well with family and friends.
Deep down, I felt cancer-free. What cancer the surgeon might have missed, I figured, the radiation and chemotherapy must have killed. My MRIs looked good, said my doctor. I felt like I was cruising toward the two-year survival mark — a key predictor of a rosy future, I had been told.
When I wrote a story about my parallel experiences as a cancer patient and a journalist covering a first-grade class, I said I was worried that, in time and with sustained good health, I would regret the loss of the intensity that cancer can inject into a “normal” life.
It was a time, I recently told my fellow support-group members, that I felt like a poster boy for the cancer set. I’d had cancer, but I was healthy and by all accounts cancer-free. The treatments were tough, but my life was moving ahead.
I spoke too soon.
■ ■ ■
Early on, after my first tumor, I sat near a man in the cancer center waiting room who was missing part of his face. It might have been his nose or his jaw, or both. He had an oxygen tube running into his face somehow. I was afraid to see more.
God, I thought, how lucky I am to have the kind of cancer I have.
When people — mistakenly — tell me they think I’m courageous because my knees have yet to buckle, or some such thing, I think of that man. Actually I think of a legion of disfigured, diseased and in-pain people who have crossed my path, bearing their burdens, and I think that, for them, just getting out of bed in the morning must be an act of courage.
I don’t know how they do it. But since I’ve had my cancer, I can’t help but think of all the otherwise ordinary people who manage to shuffle forward daily as a testament to human will.
■ ■ ■
November was a bad month for me. What I hoped was a promising romance sparkled like a firecracker and then fizzled out in painful confusion. At the same time, my father, for whom my brother and I often seem to serve as the only connections to humanity, had surgery.
Various complications and infections prolonged his hospital stay, and he seemed so disoriented that I felt obliged to spend most of a week beside his hospital bed in Los Angeles urging unresponsive nurses to ignore his rudeness and take proper care of him.
My worst nightmare — maybe my second-worst — was coming true. I suddenly had to see my father, a difficult man to get along with, as someone who, once out of the hospital, would not be able to care for himself. I’m the most responsible and capable of his three sons. It felt like all of his 275 pounds were suddenly sitting on my shoulders.
I was waist deep in stress and sinking, and stress — which is generally thought to suppress the immune system — is to a cancer patient about as welcome as kryptonite is to Superman.
My father’s condition actually improved, and he happily moved to a convalescent hospital (where he had more social contact than he had in the previous few years) for the month it would take him to fully recover.
At the same time, though, I started to feel what I think of as the “strangeness” or “funkiness” in my head.
Not exactly lightheadedness, and not dizziness, but something in between; a mysterious sensation I liken to riding a bike on which the handlebars are ever so slightly askew. You can’t ignore the change, but you don’t crash, either.
For a week, I told myself it was some sort of inner-ear “thing” related to my chemotherapy treatments, a reasonable assumption considering my chemotherapy had damaged the nerves in my inner ear and made me a bit hard of hearing and increased my susceptibility to motion sickness.
But the feeling got worse, till several days later I found myself feeling nauseous anytime I swiveled my head away from my computer screen at work. I went home and called my doctor, who scheduled an MRI (a sophisticated imaging technique that utilizes electromagnets and computers) for the next morning, Thursday, Dec. 14. I’d had plenty of cancer scares since my first tumor. Usually they began with headaches that seemed to spiral out of control. Sometimes it was bouts with dizziness.
It doesn’t take much to scare someone with cancer.
Cancer fear is like a whirlpool. You can drift in slowly, but once you get too close, you get sucked down and fear seems to amplify whatever symptom you think you’re experiencing.
All it takes is a prolonged ache, or a persistent cough, or just a period of not feeling the same as you did the day before. Frequently, the mystery ache causes so much anxiety that before you know it, the feeling is out of control and, regardless of what’s causing it, you turn into a dog trying to chase down your tail.
There have been instances when I was sure the cancer was back, only to have a headache disappear with a good night’s sleep. A couple of times it took an MRI to convince me that whatever was causing my discomfort wasn’t a tumor.
Over time, I had come to heed the advice of my doctor and his nurse not to worry that my cancer had returned unless my perceived symptoms were persistent and worsening.
This time, they were.
■ ■ ■
Still, by morning I managed to convince myself that my symptoms were all imagination. I’d come too far to slide back to the beginning again. I wish that’s all it took, will and denial.
It takes about a half an hour to squeeze into the giant MRI machine — like a cigar into a tube — and have the computer do its thing. It only took a momentary glance at my neuro-oncologist’s face, and the films on the light box in his office, to see what was what.
It was right there, where it had been before, a big white spot messing up the even gray undulations of the right side of my cerebellum.
He didn’t need to say a thing. My mom, who insists on going to these big medical events to make sure I don’t try to hide any bad news, sobbed while again I was left trying to figure out what to feel.
Disbelief. That’s all. I’d been so healthy for so long. And now? Where was I? Was I really going to die? I’d thought so much about this question before, but I never felt like death was right in front of me. Now it felt as if it were.
The next four days were a blur of sickness and fear. I started a new chemo course that, along with worsening the tumor symptoms, made me terribly sick and disoriented. I was sure I was experiencing the beginning of my end.
I had a dream in the hospital about reincarnation and dolphins, and that I was about to be recycled. I forced myself to wake up. I may have felt the power of God.
And then, on Monday, I started to feel better. My third life began.
■ ■ ■
People criticize the news media for focusing too much on violence and death. We do. But ever since I’ve had cancer I’ve taken a special interest in reports of particularly sudden and tragic deaths.
They remind me that, should cancer kill me, I had plenty of warning and lots of time to be with family and friends. How awful for people who lose someone in the course of a day and never get to tell them all the things that need telling.
■ ■ ■
I’m still here, and still smiling (most of the time). That’s what I said on the holiday greeting cards I finally managed to make and mail in March, a scant three months behind schedule.
Maybe there are many reasons I’m still around, but these are my favorites:
I like my doctor, Marc Chamberlain. He’s not only become a friend, but also one of my wellsprings of hope, always ready with a new treatment. The day my new cancer showed up on film, he immediately set up a new chemo regimen.
When that drug proved ineffective and two months later my next MRI showed the tumor had grown, he had another chemo drug ready for me. We’ve talked about bone marrow transplants and more surgery and radiation.
His assistant Patti Kormanik, a nurse whose business card carries an alphabet of acronyms denoting her specialized training, is a living definition of indefatigable good cheer.
Hope is everything to me, and having a doctor and nurse who supply it, whether it is false or true, helps stoke my own faith that I will survive.
Lots of people like me. Some seem to love me. One of the more remarkable things that happened since my cancer returned was that the holiday season, which held the potential to be sad and devastating for me and my family, actually was the best I ever had.
I experienced such an outpouring of support from friends, colleagues and strangers that it was beyond overwhelming. I believe I had the good fortune to be an emotional lightning rod at a time of year when people are anxious to counterbalance the commercialism of the holidays with pure spiritual generosity.
The most important reason is that my life — this being, in my mind, my third opportunity — is just too good to let go of.
There are days when I wake up, strap on my portable CD player and walk Beasley for an hour along Sunset Cliffs. Often, I feel an indescribable joy that I’m able to do this. It’s a cancer dividend, and I always offer a prayer of thanksgiving at the midpoint.
In my first life, the morning walk would probably have been just another thing to get done before work.
There have been moments when I’m with friends, especially the close ones who come from far away to visit me after each bad news update, when I want to shout at the top of my lungs how great it is to still be breathing.
■ ■ ■
Before undergoing my radiation treatments, I was advised to play it safe and open an account at a sperm bank. No telling what the radiation might do, said the doctor.
When I wrote my will I designated the four close friends who, should I die, might have the need and inclination to use it. I wonder whether my father — desperate for a grandchild — will pay someone to use it or, as might be more characteristic, try to auction it to the highest bidder.
Sometimes I think about death. Not the process, not the steady decline to a point where I just stop being. I’m afraid to think in those terms; that implies too much acceptance, and I feel too healthy. I’m still able to block that out and think about death as a point on the horizon that’s still too far away to focus on. It’s a point between now and somewhere in the future.
Still, death is probably the most important reference point in my life, marking the undefined space of time I have to do the things I really want to get done.
I used to think — after my first cancer diagnosis — that if it ever came back, the thing I’d most like to do would be to get on a train and ride around the country, visiting my friends and writing my autobiography, and maybe a few short stories.
But now that my cancer is back, I don’t feel like going anywhere. I’ve traveled to lots of exotic places in my life, and the most pleasurable place at the moment is right here.
Cancer itself is like a dangerous journey to a bizarre land where one never really knows what’s around the next bend or whether you’ll ever find the route home to a normal life.
Instead of traveling, I’m nesting. I gave up my tiny one-bedroom apartment and rented a too-large, too-expensive house. Finding it was an ordeal. Who else thinks about a rental property in terms of: Will this space help me heal? Is this a place where I would be comfortable dying, and the people close to me would be comfortable watching me slip away?
There’s no autobiography, just this article and others about my life with cancer.
I’m desperate to create a serious relationship. It’s something I shied away from after my first cancer because I felt I needed all my energy to focus on my own needs, rather than sharing time taking care of someone else’s.
Now I think intimacy would be healing. But when you’re shy, bald and 35, and have cancer and demanding expectations, it’s not easy to meet women.
So, for the moment, I make Beasley sleep on my bed at night, something he was never allowed to do last fall. If he tries to curl up at the foot of the mattress, I pull him up to the pillow end, where his positive energy is closer to my heart. Cancer patients do weird things.
■ ■ ■
Once a week I drive to Laguna Beach to visit an eminent retired psychologist who leads me through a session of guided imagery. She’s 80-something years old and French, and leads me through a series of visualizations designed to combat my cancer from within.
“You have to believe you can shrink and dissolve your cancer,” she says in her thick accent. “You can do it; you have the power inside you.”
I believe her. I try. Sometimes I feel like I’m doing good.
But there are moments, at other times in other places, where a frightening voice inside tells me, “No way; you’re losing; you’ll never survive.”
■ ■ ■
Something I never planned to do if my cancer came back, but which seemed important to me after it did, was to revisit the first-graders I wrote about last year.
I’m not sure why it suddenly felt important, or what I really expected to get from the experience.
Maybe it had something to do with the attention I’d devoted to understanding aspects of their development during my first round of cancer, and I felt a pull to witness a healthy example of growth and the natural progression of life over time, not just the bloom of things like brain cancer.
Teacher Jill Roberts arranged the event so that most of my former classmates would leave their second-grade classes and spend two hours in the library, doing creative, fun activities like story writing and sharing.
The faces were familiar, but the elevations were all wrong. Just about everyone looked like someone had sneaked into their rooms one night and added six inches of leg somewhere between ankle and thigh.
William N., the boy whose experience with glue — a reader favorite — I’d chronicled, no longer had the world’s most perfect stand-up haircut. Gravity was exerting itself.
Brianna, the math whiz, was still a jet of precociousness. Elyse had given up her ubiquitous white cowboy boots for tennis shoes, and Jenny the writer still spoke in whispers.
Some of them — really just a few — were glad to see me, and made sure to give me hugs. Others appeared to care less that I was there. They were happy to see their friends again, to have the time away from class and the cookies provided by Roberts, but I didn’t pique their interest.
And, in the end, that’s what made it all so special to me. It was an inspirational and overwhelming reminder that the past is the past and the future is the future, and the best way to live is just as they do, one day at a time.
On April 1, a CT scan revealed the tumor is larger. This week, Silvern will undergo additional surgery.
Editor’s note: 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 cancer returned. This is the first story in an occasional series on living with cancer.
Reproduced with permission from the San Diego Union-Tribune.