By Drew Silvern
UNION-TRIBUNE STAFF WRITER
July 5, 1996
Drew’s second surgery seemed to go smoothly, until his brain began leaking spinal fluid. He ended up in the hospital for two and a half weeks. He endured bedpans, late-night fears of death and insensitive hospital workers. Meanwhile, letters and cards arrived from concerned readers. He kept them in a box under his bed.
Please be sweat.
That’s what I hoped was rolling down the back of my neck along the line of stitches that began near the top of my head and ran like a zipper to the base of my neck.
It was 10 on a late April night and it had been two weeks since my latest surgery for brain cancer. I was alone at home.
I wiped away the first drop, and then a moment later there was another. Same place. Nowhere else. It sure felt like a drop of sweat.
But I had been through something like this before, two years earlier. In 1994, after my first surgery to remove a malignant tumor from the back of my brain, I noticed a lump near the wound. When I presented myself at the emergency room, I learned that the back of my skull had been removed during surgery (and not replaced — standard procedure) and that any infection to the wound could quickly reach the brain and be life-threatening.
I was terrified, then and now.
Without hesitation I drove to a friend’s house for an inspection. Though she said things looked OK, I had her take me to the UCSD emergency room. I didn’t want to give any microbes a night’s head start.
It didn’t make a difference.
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There’s no place like a hospital emergency room late at night. They’re like drains that funnel regular and irregular people into the same tight spot where everyone is anxious and uncomfortable and bathed in the bright, nervous fluorescent light.
People there are totally confused about whether the thing that happens to them next will make them feel better or worse. At UCSD in Hillcrest, where I went, there’s always the chance you’ll cross paths with someone who’s been bloodied by gunshots, or is so drunk he’s screaming at doctors and nurses to leave him alone. The experience can be discomforting, especially when you realize you could end up as roommates.
The only people who seem brave enough to change the television from one awful channel to another are the employees on a work break. Those of us waiting suffer the consequences.
Before you see anyone with medical knowledge, you have to explain your problem to a receptionist, who — unless you have a prior doctor referral to be there for your emergency — must track down someone who approves your presence.
Your discomfort is amplified when you hear the receptionist talking about you over the phone, making it sound as if you hopped out of bed in the middle of the night to go to the hospital for a routine bandage check. There’s no mention of leaks and fear of infection.
Only when I agreed to charge the visit to my credit card did the wheels of medical care start to turn, and an hour later, the “on-call” neurosurgeon (resident, fellow, attending physician? — one can never tell in a teaching hospital) arrived.
He took one look, and with a concerned face grimly confided I was probably leaking cerebral spinal fluid. He ordered a CT scan pronto to see how bad things really were.
It was deja vu.
Before I knew it, there was confirmation that things were not well, that my leak was from deep inside my head, and it was going to earn me two spinal taps that night and a bed in the hospital. I would have to lie still on my back for at least a week with a needle and tube inserted into my spinal column to drain the fluid and keep it from compressing my brain.
Those few drops seemed to lubricate my slide into the hospital, onto a gurney, and left me with the scary feeling that my body was now under the control of unfamiliar doctors. One more unwanted chapter in my life with cancer.
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A bedpan. Nothing in the universe, except probably death itself, scares me more about a hospital than my fear of being in a position of having to use a bedpan.
Seems stupid for someone with so many life-and-death issues to worry about, but that was one of my first thoughts when I was told about being confined to bed for so long. I probably could come up with a lot of deep explanations for this fear — most of which would have to do with my terror at being in a position where I have no control of the situation — but at its most basic, I think it’s a question of abject humiliation.
My hospitalization also meant I might miss my upcoming bar mitzvah, for which I had been preparing for nearly a year, as well as an upcoming ceremony to get a writing award.
My biggest fear, though, was that all this was going to set back my cancer treatment. The surgery had been prescribed as a palliative measure, a way to decrease the size of my tumor so that it could be treated with more chemotherapy and radiation. Now everything would be on hold.
The grinding sound of needles rubbing against bone as they’re inserted into my spinal column refocused my attention to the immediate. In my lengthening career as a patient, nothing has been so poignant or painful to me as spinal taps, and the hellish headaches I always suffer in subsequent days.
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The first night in a hospital, alone, is bad. You’re transported from the emergency room in a bed, on your back, never sure where you’re going, then elevatored to a room somewhere — in my case the intensive care unit — where you wallow in your shock and what you feared was an emergency seems like one to a doctor as well.
No matter how many nurses or monitors buzz around you all night, it feels as if you’re in a deep, dark cave listening fearfully to an inner groan — your fear of what’s happened and what will happen to you, and just who will take care of you.
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For the next several nights after my admission, I had the company of my brother, mother and a few very close friends. Each night, I had terrible headaches and excruciating leg cramps (no one could figure out why), the pain of which was lessened a bit by narcotics, but mostly just by having someone gently rub the soles of my feet.
I was a guy with a needle in my back, connected to a tube that drained fluid into a plastic bag pinned to my bed, in a room with two nice men recovering from kidney transplants.
Every morning, just before I was ready to see other human beings, a team of budding neurosurgeons and neurologists in training would arrive to look me over.
At first the issue was whether I would need “a temporary or permanent shunt” — a tube to drain the fluid from my head to my abdomen — or whether the situation would just take care of itself.
There was concern about whether the surgical wound would heal naturally, or whether the stitches would have to be removed, the incision reopened and the whole thing rebuilt stitch by stitch.
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To understand why most animals don’t do well in captivity, I suggest a spell in a hospital bed, which perhaps not coincidentally always comes equipped with bars on the side.
Someone brings you your food from a cart, and your options for entertainment or distraction are severely limited. If you’re not miserable with pain, you can read. If you’re too uncomfortable to think, you can try to watch television, as long as you can understand the dialogue that is piped through the little all-in-one nurse-call/television-sound speaker devices that hang on each bed and resemble those you attach to cars at drive-in movie theaters.
I recall trying to take what I perceived as a Zen approach to those first few days, trying just to accept that I had to lie there and let them pass, and that my situation, I hoped, would resolve itself and I could go home.
At night, since I couldn’t sleep — does anyone in a hospital? — I’d listen to the plethora of Filipino nurses who congregated at the nursing station outside my room. They spoke in Tagalog and it sounded like music.
It was frightening and frustrating to know that at a point where I wanted my world to focus on getting back to my cancer therapy, I was in storage.
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Then, as has been my pattern since last December, when I first learned that my cancer had come back, my luck changed. In a bad way.
I don’t remember how the news was delivered. I think it was a member of the neurological team appearing at my bedside one morning and simply informing me that the cerebral fluid, which was clean and uninfected when I arrived, now showed signs of infection.
I remember hearing a “sorry” and “we don’t know how or why,” and then the promise that this would prolong my stay, maybe by a few days, and the needle and tube would have to stay in my back. It also would mean more days of immobility, and more days before I could leave. It definitely meant no bar mitzvah, and I’d probably miss the ceremony at which I was supposed to get my writing award.
Worse, it meant another delay in getting back to my life as a guy with a malignant brain tumor desperate for cancer treatment.
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You never meet anyone when you’re a hospital patient — at least I haven’t. Sure, they may be stuck in a bed five feet away, but who wants to talk to someone when you’re grimy, uncomfortable and in a hospital gown?
Still, you learn all about them. You can’t help but hear everything they say on the phone, their complaints to nurses or family members about their pain, their treatment and every other crisis that touches their lives and those around them.
I had one roommate — for an hour or two — who had been shot in the leg by a relative, and he simply couldn’t stop screaming about the nurses, his pain from his gunshot wound and the gas pains that were causing him terrible intestinal discomfort.
Besides dealing with strange roommates, a crucial survival skill the long-term patient needs to learn is how to contend with visitors. I’ve always found it incredibly difficult to divine my way through wanting to have someone around me when I’m ill, but not everyone. And yet I’m amazed at how much some people — the wrong people — want, or feel the need, to occupy your time and space, when just the briefest hello and goodbye can be exhausting.
There’s nothing so nice as a sweet card or note, and nothing so uncomfortable as an unwanted visitor lowering themselves into the chair next to your bed to talk.
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I didn’t feel infected when the neurologist first told me about the infection. But in the next day or so things got worse. So says my mom. For me, much of the next week seemed like a roller-coaster ride down to intensive care and then back to a room on the neurosurgery “intermediate care” floor and back again.
All the while, like someone trying to avoid the crowded public restrooms at a stadium, I would focus my energy, in those times when necessary, on conniving to use a bedside commode, and not a bedpan (which I only required once in my 2 1/2 weeks of confinement).
At some point I developed a fever and started misforming and speaking words that were unintelligible. I was diagnosed as having meningitis (an inflammation or infection of the membranes that line the brain and spinal cord).
In the coming days, the fever would come down, the drain would come out and the infection, as well as the ongoing crisis of my fluid buildup, seemed to abate. My old surgical wound, from whence the leak began, seemed to be healing.
There was talk that I might go home soon, to my own quiet bed, in a room with windows that could be opened,
near my own bathroom and free of the tubes, intravenous needles and telemetry wires that seem to dog serious hospital patients.
Then came the pneumonia. It shouldn’t have surprised anyone that after 10 or 11 days of lying on my back, rarely sitting up or getting out of bed — except for that trusty commode — I got sick again.
It was my mom who noticed while I was napping one afternoon how quick and shallow my breathing had become.
In short order, there was another high fever, more intensive care and talk of having to have a ventilator put down my throat to make sure I kept breathing.
Again, thoughts of home, of walking, of bathrooms and, ironically, most important to me, cancer treatment seemed to move back over the horizon again where all seemed so terribly out of reach.
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I seemed to be a magnet for doctors during my hospital stay. I collected them in teams. After the neurosurgeons and neurologists, there werehematologists and infectious-disease experts and a team of pulmonary specialists.
The experience has left me with mixed feelings.
It was a blessing to have all this specialized attention, all those sharp minds focused on getting me healthy. But the attention didn’t come without a strong sense that I was a puzzle to be solved, and there was a competition to see who, and which team, would do it first.
There was always a sense of pressure that if I would say OK to one more uncomfortable test or procedure, one team or another would come up with a definitive answer and quickly provide the key drug that would have me home quickly.
Yet, I was astounded by the time and energy the mostly young doctors put into treating me, and how they seemed to remain so unfailingly nice and attentive to my needs despite the fact that it seemed they were at the hospital virtually night and day. I never could figure out how they work so hard and stay so nice.
I remember one young doctor actually holding my hand while he talked to me — a move that, as trite as it might seem, was extremely reassuring.
I felt the same about all but one of the nurses I met in my lengthy UCSD stay. It’s hard for me to imagine people being able to remain so caring so consistently, even in the middle of the night, to people like me who, with time and discomfort, inevitably become demanding and inflexible.
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The greatest miracles that occur in hospitals must take place in the kitchen. During my first week at UCSD I actually liked the food. It was always some sort of meat dish I’d never eat at home or in a restaurant — something really basic and American and old-fashioned.
By the second week, though, when the menu was repeated, I just couldn’t figure out how they got everything to taste exactly the same. Chicken and turkey began to taste just like the beef, and the mashed potatoes were a wash for all the fresh fruit and vegetables.
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No one ever figured out just what caused my pneumonia. They tried mightily, but in the end, the bug defied culture and identification, but seemed to respond to a series of different antibiotics.
Sure, everyone wanted to continue to test and probe until they got the answer. But in the end, the appeals from me and my mother to some of the more senior doctors put an end to the tests and the puzzle-solving, and I went home with a regimen of pills, a walker and two kinds of oxygen machines.
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It’s astounding how just a few weeks of being cemented to a hospital bed can rob your body of vitality. I felt like a newborn colt, almost unable to stand when I got home. Walking up a few stairs seemed a new and daunting task.
But by the end of the first week home I could walk one-quarter of a mile, and drive.
That was the good news.
The bad news, worse than ever, was that my tumor was back, as big as it was before the surgery, and along with it was the finding that there are cancer cells in my cerebral fluid and I have a new cancer “spot” in another part of my brain.
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In previous articles about my life with cancer, I’ve written that I haven’t suffered. Now I feel that I have a bit. Certainly not in the way that so many I know have, but I had my share of physical discomfort in the hospital.
Much worse, there were times when I was stuck on my hospital mattress certain I’d just slip away and die.
While I continue my fight to not have cancer and to find new therapies, I spend a lot more energy each day keeping my fear at bay.
There have been times where I’ve felt the only way to neutralize the terror was to take a good book to my hammock and revel in the peace of a gentle breeze and the fictional stories of someone else’s life.
Always, I’m awash in a sense of the utter rawness of my struggle for survival now.
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In the several weeks since I left the hospital, I’ve taken more responsibility for investigating my options for different treatments and actively “managing” my case.
I’m looking into alternatives, and have religiously worked my body back to the point where I can take my dog, Beasley, for a four-mile walk each morning.
Everything’s harder than it was a month or two or six ago. Hardest, but what I still find most important is to make sure that each morning, on each walk, I’m still able to get myself to pause and give thanks that I’ve enjoyed one more dawn, and can look forward to, at least, one more good day.
DREW SILVERN is back at work at the Union-Tribune and waiting to begin a new round of chemotherapy treatments.
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 tumor returned. This is one in an occasional series on living with cancer.
Reproduced with permission from the San Diego Union-Tribune.