“Maybe, but I’m still terrified. Sometimes I can’t handle the fear. It gets so overwhelming.”
“Don’t let the fear get to you. You can’t face everything all at once. Try to break up your fear. The fear of being alone, of dying; fear of the pain and of everything you’ll miss out on. Just the way you take your illness day by day, face your fears day by day. If you break it down and see each fear for what it is, you can overcome them.”
“Did that work for you?”
“Yes, and it will work for you, too. You’re strong, anyone can see that. I’m sure you’ll get through this.” Jur makes it sound so easy. His dark eyes look at me intently. So intently that I lose everything around me and nothing else exists but him.
“You know, you can always call me. Even at night. I know what you’re going through.”
After two hours Jur is the first to get up to leave. I could have stayed much longer, but I keep that a secret. I watch him as he crosses the now-deserted square. My heart is still beating fast from our conversation. I never expected a cancer buddy to come in such a nice-looking package. In two hours he took away all my loneliness of the past two months. I could eat apple pie à la mode with this guy every day.
MONDAY, APRIL 4
BACK IN THE SEVENTIES, my father used his inheritance to purchase a run-down seventeenth-century canal house in Amsterdam. It soon turned out to be a good investment. He moved in with five friends and they all renovated it together, and now each of them has their own tile engraved in the hallway: Ton (my father), Raymond, Henk, Mark, Geert-Jan, and another Ton. Loes, my mother, was the last tile to be added. My parents’ romance started just a few houses down from ours, where Mom used to live before my father snatched her away from her basement apartment.
Visitors compare our house to the house where Anne Frank was hidden because of all the stairways and unexpected corners, but it was still just a construction site when they fell in love. The staircases hadn’t been built yet, and the house was filled with construction debris. Every night they would climb three stories up ladders to the top floor and fall asleep on a pile of cement bags.
The rest of the group moved out when my mom’s first baby bump appeared. Sis came, and three years later I was born, in what is still my parents’ bedroom. Sis and I were soon followed by three cats: Keesje, Tiger, and Saartje. Keesje was sent to a “petting zoo” early on. My parents couldn’t bear to tell their little girls the truth, even though that cat was meaner than mean. Tiger got run over when he was only three; cause of death: two collapsed kitty lungs. Fifteen-year-old Saartje is the survivor. Her sight isn’t as sharp as it used to be, and unfortunately she suffers from dementia, which could explain her poorly calculated attacks on passing Rottweilers.
* * *
Some colors just don’t match, but my father’s never been able to see that. This morning he pulled on an apple green shirt with an olive green jacket.
“For a special occasion!” he says. Bless him. The occasion in question is dropping me off at the hospital again.
These days he hates to shop; he can’t be bothered. But it was different when he was younger. Back then he had a mustache at least twenty centimeters long that curled up at both ends like Dalí’s. Before he went to sleep each night he clamped the ends with two clothespins to keep them curled. And when he went to parties he brought his “pet” with him: a stuffed crocodile on roller skates with a leash around its neck. My father pulled him around all night long, dressed in striped boat shirts with an Italian silk scarf around his neck. Both the mustache and the crocodile are gone now, but all the rest has stayed.
When my father met my mother she was still running her antique shop. In the evenings she worked for a fashion designer, sewing costumes and evening dresses. By the time my sister and I were born, she had swapped her fishnet stockings and cowboy boots for pencil skirts and vintage heels. I don’t know if it’s Amsterdam or them, but I’ve come to realize that my parents are kind of cool. Nothing’s ever been taboo in our house. Although it’s easier to talk to my mom about stuff, my father turns everything into a joke, not leaving much untouched either. Like the other day in the hospital when I went to pee and he waited in the hallway for me, and I discovered my pubic hair was now parting from me too.
“I wonder if they sell bunches of pubic hair at the wig store?” he joked.
“Or maybe they’ll throw some in for free with the purchase of a wig?” I replied.
“The colors do need to match of course.”
“Of course.”
* * *
For the same occasion for which my father wears his green ensemble, I have put Sue on my head and packed Blondie and Daisy—in the hospital I prefer to blend in rather than stand out. I’ve left Stella home, whom I haven’t taken out in months. On the way to the hospital it’s always a bit quiet in the car, because we have to prepare ourselves for Dr. L, rhabdomyosarcoma, fear, and all the other misery the hospital has to offer.
But the moment I set foot in the building I switch gears, and the only thing on my list is survival. Despite the ward smelling like chemo and death, I do feel safe in the hospital. It’s a small and lonely world but also a cozy and warm one. That switch gets me through my hospital days but makes the distance between my two worlds feel greater than ever. In the hospital I’m a girl too sick for her age, seeing time pass by while lying in bed. But the outside world is so full of life, being so many women at the same time and being occupied with only one thing: having a good time.
Today I get to see the images from my scan. There’s a series of small, dark images hanging in front of me that Dr. L has clamped to his projection screen.
Dr. L laughs when I walk into his office as fierce Sue, and then turns to the matter at hand: my lungs. I can see it for myself, the tumors are smaller. The contour of my right lung shows much fewer abnormalities than it did two months ago, when the battle had only just begun. The pleura around my left lung runs in a curve so nice and smooth I could copy it with a compass. The fleece around my right lung, however, is not geometric in the least. It looks like spaghetti with some odd pieces of ravioli. The biggest ravioli is down low, close to my liver. I named the three hanging around the middle of my lung “Huey,” “Dewey,” and “Louie.” There’s a loner up at the top, hidden deep behind my right breast. I christened him “Naughty Norbert.” “Rhabdo” means rod-shaped, “myo” means muscle tissue, and a “sarcoma” is a malignant growth. In a myosarcoma, the tumor cells attach themselves to the body’s soft tissue. It can be connective tissue, muscle tissue, or any other type of tissue. This kind of cancer can occur anywhere in the body but usually occurs in the arms and legs, due to the diagonal tissue that makes up those muscles, and occasionally leads to amputation. I count my lucky stars that my cancer cells are swimming around my lungs.
On the scan the abnormalities are not much bigger than a needle point. In the first scan, the largest tumor was the size of a Ping-Pong ball. Now it’s half that. The fact that the tumors are attached to an organ and that that organ is a lung pretty much rules out an operation. That gives me one less weapon to fight with, but there’s always radiation.
There are three discernible stages of my disease, and Dr. L tells me I fall in the middle category. Not the toughest group, but not the easiest either. Unfortunately, because my disease is so rare, scientists haven’t been able to collect much information on the cause or the recovery process. Most believe it to be caused by an abnormality that developed when I was still just an embryo, but no one can tell me why this abnormality has suddenly decided to try and kill me now, twenty-one years later. In any case, all this has led to plenty of discussion among the pathologists, anatomists, and oncologists at my weekly diagnosis sessions. Apparently, this all-star team doesn’t always agree, not even on my diagnosis, but Dr. L tells me I don’t need to worry about that too much as long as the treatment is working. Which it is.
My age makes my case a little puzzling too. Rhabdomyosarcoma is very much a childre
n’s disease. Getting through the treatment will be as tough a battle as fighting my disease. Therefore, my blood values are carefully monitored. Blood transfusions for my low red blood cell count, leukocyte injections for my white blood cells, and thrombocyte transfusions to boost my blood count even further. Low blood counts mean no chemo. In real life, I can see it in my pale skin and lack of energy, my weak immune system and the constant bruises all over my body.
When Dr. L is finished, I walk out of his office and let the tension ease out of me. Even though I’ve been given good news again, Dr. L’s office will never be a place I can relax.
I can tell the cure is working, also without the scan. My body is getting used to the new drugs and recovering better after each round of chemo. I’m slowly putting weight back on, and as long as I take my antinausea drugs on time, I no longer have to throw up. Although chemo kills much more than is good for me, I try to see it as a strange rather than poisonous enemy—one who’s helping me get better. It’s my disease and my battle.
These days I study at the hospital’s medical library rather than at the university. Here I can finally face my greatest fears. I carry a copy of my file everywhere. Every doctor who crosses my path is questioned. My nurses spend their coffee breaks making copies of medical journals for me. The once-alien values on my lab form are now familiar and even have the power to comfort me. I want to know and understand and research everything—including my chances of survival, however crude it may be to see my own mortality translated into statistics. The day that it became clear my tumors were attached only to my lung and not my liver, those chances went up from 15 percent to 70 percent. My first CT scan is in the bag. The number of soaked T-shirts beside my bed has been reduced to zero, the visible “raviolis” around my lung to three. I feel stronger, less a victim of my illness. It’s not a reality anymore I can’t deal with. So I moved back into my own room. Away from my parents’ protective bosom, but still within arm’s reach.
WEDNESDAY, APRIL 6
MY FATHER ISN’T THE ONLY one who has trouble mixing colors. The interior decorators of the hospital must have missed out on their color-matching classes. Apparently the primary colors divided up into square patches on the walls of the pulmonary ward have a psychological meaning. The yellow window frames set off against the blue contours are meant to bring me a sense of peace and calm. I seriously wonder which unrest came first in the days of Dr. K: the one caused by the colors or the one caused by needles. Here on the C6 ward they managed to keep this experimental designer at bay and opted for soft lilac and baby blue, a combination that strongly reminds me of the interior of my primary school. Maybe that interior was meant to calm down its occupants as well.
I call C6 my resort spa, which isn’t really that far from the truth. It offers me everything a spa does: peace and quiet, treatments that (hopefully) leave me healthier than when I arrived, and nurses who dote on me hand and foot.
This will be the last of my weekly chemo cocktails. After this stay, I get a new dose only once every three weeks.
Bas is about to call out his usual “Hey, Baldy” when he discovers Sue on my head. “Surprise!” I call out. Nurse Pauke, another nurse, is not amused and immediately gets down to business.
“Heart, bladder, and kidneys: those are the organs we need to keep an eye on. Do you have any complaints?” Her no-nonsense attitude does me well.
“My heart? Well, it could use a bit more romance, but that’s probably not what you meant,” I answer playfully. “Otherwise, I can’t hold my pee in as long as I used to. Sometimes I have some leakage issues.…” I trail off. Bas jokes that he’ll find me some Depends for old ladies and leads me to my room.
I’ve been downgraded to a bed in one of the shared rooms. Until now I’d been protected from this fate. The four private rooms on the ward are reserved for patients who are dying, need to be in isolation, or are otherwise exceptional. I’d fallen into this last category during my previous stays, being the youngest and the most recently diagnosed, but unfortunately there are too many cases in the other two categories at the moment. So, as my condition gets better, I am condemned to a room full of cancer.
Wedged in between Aunt Agony and Auntie Blah, I occasionally exchange knowing glances with my elderly neighbor across the room, who has been the unfortunate witness to their gossipfest for a few days now. The average age in this room must have been about seventy; I brought it down to fifty-eight and a half.
“Good morning! Anybody thirsty?” The ever-cheery coffee lady is making her rounds.
Not a stir.
“Not all at once,” she jokes. Still no response; we vegetables are busy vegetating. She fills our tea and coffee mugs all the same. I’m hooked up to my IV pump, and an annoying new nurse is making numerous attempts at taking some blood samples.
Next, the cleaning lady enters to sterilize all the cancer cells floating around the room.
Mom sits in the chair beside my bed. Dear, loyal Mom. Not a day goes by that she doesn’t put on her red lipstick, even when she was going in for her own chemo treatments. She’s energetic and assertive, especially where her daughter’s health is concerned. She barely gives the interns the time of day, and even the residents are given a hard time every now and then.
“Are you sure about that? Does Dr. L know about this?” is one of her favorite lines. Or when my IV is being changed: “Only if you can manage it in one go. Otherwise you can go and get your supervisor.” She guards my bed like a knight guards his castle. We share a lot in this awkward space. She sees exactly how my mouth stiffens when the IV is inserted and how my smile disappears when I’m sick to my stomach. When the hospital sucks and all the people in it are assholes. Sometimes that’s all it is. And she knows that. But having her in arm’s reach is as comforting as it’s difficult. When I’m alone, the illness is like a problem I just have to go through. With my mother sitting next to me, it’s not just my problem anymore. And that makes it too big a problem to handle. I don’t have room for my family’s emotions, only for my own. Seeing them stiffen in fear or break down in sorrow is more than I can deal with. My family knows. They are in constant careful anticipation of my emotional and physical state of being. Also, the continuous fatigue can turn me into a real sour prune. Whenever anyone comes near me on a bad day, they hold their breath for fear of irritating the princess on the pea.
* * *
Dr. L stops by. As usual his esteemed interns accompany him so they can discuss their latest medical discoveries during lunch; cancer-talk while they chow down their cheeseburgers. Dr. K appears only in my dreams, and every so often in the corridors of the hospital when I’m on my way to visit Dr. L. It’s not fair, really, that of all the doctors in all the different specialties in this hospital, the one I ended up with has the worst bedside manner.
“There you are. It’s always a bit of a hunt to find you. Is this your latest addition?”
Hmmm. What’s that? A joke? I swapped wigs about an hour ago. I nod proudly. “Her name is Blondie.”
Sue and Daisy are hanging over the IV pole, which I have taken to using as a clothes hanger. It also sports a dressing gown and my purse. The interns giggle in chorus. Even Dr. L gives me a brief smirk. Something’s changing about him. He makes jokes now. And he looks at me differently. In a kind and caring way.
Although the basis for our interaction is purely medical, our relationship feels extremely personal. At least to me. The hours I share with Dr. L are the most intimate moments of my life given they are the most painful. He is with me when all my defenses are down. He knows the fear I feel when he looks concerned and the joy I experience when he gives me good news. I can’t fight this fight without him. And I don’t want to, anymore.
Now that I’ve seen his kindness, I wonder what he puts on his sandwiches. And what sort of house he wakes up in. And how he gets from that house to the hospital. So far I’ve found out that he lives in a village whose name starts with an O and that he takes the train there and back. I find
that strange. This man is so immensely important to me that I expected him to travel in a chauffeured car with tinted windows and a butler. Not to have a chaotic morning ritual like us mortals of making the kids’ sandwiches, gathering papers, and rushing late out the door, off to the hospital to save lives.
I spend all morning lying in bed while the busy stream of traffic continues around me. It’s only the first day, but I’m fed up already. I’m smelly, dizzy, and feeling bitter thinking about the plans I have or had. I wonder if it’s easier to know if it’s the present tense or the past than not knowing at all.
THURSDAY, APRIL 7
ALL THE PERFUMES AND LOTIONS in the world can’t counteract the inescapable BO caused by chemo. Even my pee stinks. “Chemo pee,” Pauke calls it. I’m reminded of the smell all day long, seeing as how I have to use a bedpan instead of a proper adult toilet. At first I tried to get rid of the stink with all of the contents of my toiletry bag, but I’ve since learned that I don’t stand a chance against it.
Pauke, who wears Birkenstocks as if they were designed for her, has just stopped by to weigh me and take my temperature and blood pressure. She’s not like the other nurses; she’s not like some of the others a deejay, a part-time salesperson, or a hip young thing. She’s an old-fashioned nurse who likes to get things done. She’s so tall that as she works her way efficiently from bed to bed, she reminds me of Miss Clavel from the Madeline books I adored as a child. She makes sure that everything that needs to happen gets done but never loses her cheerful smile—even when her needle misses its target every now and then, but that only happens on her off days, which even she apparently has.
Today I’m in too crappy a mood to wander the corridors of my ward. After a few hours of chemo the nausea slowly starts to rise. It’s not enough to make me throw up but more than enough to make me shudder at the thought of eating. Pauke coaxes me into getting out of bed long enough for her to change the sheets. She does this every day, unless I win her over with an extra-sad face. I’ve only managed that once, when I timed it perfectly so that I threw up just as she came into the room.
The Girl With Nine Wigs Page 5