The Girl With Nine Wigs (7 page)

My age makes my case a little puzzling too. Rhabdomyosarcoma is very much a children'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

M
Y 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

A
LL 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.

I ask her if she ever thinks of me when she disappears into her own world after she leaves the hospital at the end of her shift.

“Yes,” she says, “but when I think about you I think of figs and dates, not IVs or sterile needles.” She thinks of delicious, sweet figs and soft, creamy dates. Just because I once read the nutritional values of these fruits out loud while she was taking my blood pressure. That's another way of looking at things.

So when I think of Pauke outside of the hospital, I think of her three teenagers at home waiting for her to finish her shift; of Cap Ferrat, because she has the most beautiful stories about it; and of Miss Clavel.

And when the moment comes that she disappears into her world I change wigs in order to not disappear in mine. I take off Daisy and put on Blondie. Her magic is at its most powerful in the moment of transformation. Then I fall asleep with my short blond bob glued to my skull, dancing the night away to the sounds of my tall friend standing next to me and with Mr. Gatsby himself, in his royal back garden and lifted by his royal heart, into a different life, leaving mine behind.

 

FRIDAY, APRIL 8

I
N THE MORNING
I
'M WOKEN
up by a nasty lady with an even nastier-looking needle in her hand. She's lugging around a plastic bin with all her equipment. It's not even eight o'clock; my face is still stuck to my pillow, and I refuse to open my eyes. I'm so nauseous. Resistance is futile, so I meekly stick out my arm. I keep one eye open and focus hard on her needle in the hope that she gets it right in one go. No such luck.
Jerk.

She draws aside the curtain and I'm served my breakfast.

“Morning!” the coffee lady calls out so that anyone still asleep is now definitely awake. Just like every other morning, she brings me a thermos of boiling water so that I can make my own green medicinal tea. I realize I need to pee when I see a new bag of salt solution being pumped into my drip, but that means messing around with my tubes. I wish I could just go back to bed, but the constant stream of coffee ladies, needles, nurses, and doctors makes it impossible for me to close my eyes and pretend that I'm somewhere else.

I get up and ready myself to go see the dental hygienist. I have to see him pretty regularly to make sure my teeth don't fall out from all the medicines running through me. So far they're holding up pretty well. According to him I have strong teeth. “Just like your mother.”

To get to his office I have to venture down to where the normal people are. Normal people who might have minor ailments but aren't rotting away upstairs. Normal people who are just here for appointments, not to stay. Downstairs everything is still innocent.

Chained to my IV stand, I take the elevator to the ground floor. In an attempt to blend in, I've put on my normal, everyday clothes: jeans and a black turtleneck sweater, Blondie on my head. Too bad I can't hide my bright red puffy cheeks. It feels as if everyone is looking at me. Their looks tell me that they know I haven't come from just any ward, but from the oncology department, where the people with cancer are kept. These confrontations are maybe the worst part of the whole disease. For them it's unreal and for me it's reality. It's in their eyes, in their way of looking at me; I see I'm not one of them anymore.