I looked at my daughter, who was trying to lock eyes with the doctor. Her green eyes were laserlike. I’d heard the word “infiltrating,” too. I hadn’t liked the sound of it, either, but I hoped Britt was jumping the gun.
The surgeon was clearly uncomfortable. “Based on the MRI, I would say that you have a glioma, a primary brain tumor. This means that the tumor started in your brain. It didn’t metastasize from some other place in your body.” The doctor shifted his weight and glanced around the room, avoiding eye contact. “Based on the scans and your age, I suspect that it is a glial tumor, possibly astrocytic.”
I felt the slap of information, like a sucker punch to the gut. Reeling with the impact of the words “brain tumor,” I frantically dug around in my purse for pen and paper to write down “glial” and “astrocytic,” The doctor was talking fast and using medical terminology I didn’t understand.
“We suspect this tumor has been developing for some time, because of its size and because in the functional MRI we detected that some brain function in the prefrontal lobe and the temporal lobe has relocated. These changes in creating new connections between neurons happen very slowly. The tumor is quite large, and has increased intracranial pressure. We’re giving you steroids intravenously to reduce brain edema.”
The neurologist took a quick breath and continued. “The reason the tumor is described as infiltrating is that as seen on the MRI, it has undefined edges and has invaded quite a bit of the surrounding brain tissue. A biopsy will be needed to be absolutely sure of the diagnosis. We need to collect tissue and do the histology to know what we’re dealing with.”
“So, this thing is going to kill me, right?” Brittany said. In the dim light, her face was a pale dispassionate moon. I’d detangled and braided her hair the day before, and long plaits hung on either side of her face.
The doctor held up his hands. “Not immediately. You have some time.”
“But it will kill me eventually?” Brittany’s voice rang out forcefully.
“Over time, yes. This tumor presents as a low-grade glial tumor. Historically these tumors evolve into malignant gliomas. I would like to use a stereotactic needle and take a biopsy, collect some cells to have analyzed. That would be the logical next step.”
“How long do you think the tumor has been growing?” Again, Brittany’s clear voice asked hard questions I couldn’t even contemplate.
“I’d estimate somewhere in the range of seven to ten years,” he answered.
Again, another slap of information. Ten years? I felt a wave of nausea.
“Do you transfer patients to Oregon?” Brittany asked.
A ripple of recognition crossed the doctor’s face. It undulated across my brain more slowly. Oregon? Somewhere in an old file in the dark cobwebs of my mind, I had a fuzzy recollection of a controversial law in that state. It had something to do with doctors helping people die. “Why would you ask about Oregon?” Here, the doctor made a strategic error in choosing to play dumb.
“If you don’t know why I’d want to transfer to Oregon, this discussion is over.” Brittany’s voice was filled with disgust.
I shivered. Gary wrapped his arm around my shoulder before quietly asking, “Is the tumor operable?”
“Because the tumor grew out of the brain, it has tentacles, or roots. So no, in my opinion it is not operable.” The surgeon looked around at our stricken faces.
“Are other doctors operating on these types of tumors using new technology, like gamma knife or laser?” Gary asked. My Harvard-educated husband was the first of us, other than Brittany, to form an intelligent question. The engineering company we owned had been involved in the design of similar technology.
“There’s a surgeon over at UCSF who’s really out there doing some crazy . . .” The surgeon’s hands circled in the air. “I should say, cutting-edge things.” He shrugged his shoulders. “I don’t really agree with his approach, but you could see what he has to say.”
This was how he referred to a colleague? The way he delivered this terminal diagnosis enraged me. Why didn’t he sit down? Why didn’t he go over the MRI images with us? Why was he slowly backing out of the room?
“If Brittany were your sister, Doctor, what would you do then? Would you handle everything here at the community hospital—or would you perhaps consult elsewhere?” I heard the bitterness in my voice.
“I suppose I’d see what the UCSF neurosurgeon had to say, and go from there.”
Immediately Dan suggested that we work on getting Britt transferred to UCSF.
Yes, I thought, let’s get out of this hellhole. I hate this cold fish of a doctor.
The neurosurgeon started to slip out the door again, his desire to have this meeting over palpable.
“I’d like you to send someone with information about transferring to Oregon,” Brittany called after him.
Gary looked at my face, and took my cold hands in his. He suggested that we might step out for an hour to let Dan and Brittany have some private time.
I bent and kissed Britt’s forehead. From behind a painful lump in my throat, I squeezed out a hoarse whisper. “We’re going to get a second opinion. Don’t give up, darling. I’ll be back soon.”
As unidentifiable sounds bubbled out of me, Gary pulled me into the hall and around the corner. The sounds I was making weren’t controllable, or recognizable. I sputtered and moaned, trying hard not to let go of whatever was dammed up behind the lump in my throat. Gary tried to get me outside the ICU so Brittany wouldn’t hear what was coming.
We stopped at the elevator, and I hit my husband hard in the shoulder. “No,” I said. “No . . . no . . . no!” Each “no” was louder than the preceding one.
“Come on. Let’s go outside and get some air.” Gary pulled me into the elevator. I slid down the wall and sat on the floor sobbing uncontrollably. In the reflection of the door, I saw my mouth stretched and contorted, mascara running down my face, snot running from my nose. For a split second, I laughed a pig-snort of a laugh, because the image I saw was what Brittany called “ugly crying.” She hated ugly crying. Brittany always cried in the shower, because she wanted to avoid others witnessing it. My daughter once pronounced Claire Danes one of the best ugly criers in Hollywood. As I rubbed my streaming nose on the sleeve of my sweater, I knew that Claire had nothing on me.
“Deb. Come on, honey.” Gary tugged me up and propelled me out of the elevator. “Hold on. We’re almost there.” Gently he pushed me toward the entrance.
The cool night air hit me. I released a pent-up, god-awful wail. People coming in and out of the hospital walked faster to get away from the ear-piercing noise. I fell to my knees in the planter area before Gary could get me to the car. I got out my phone and flipped furiously through my contacts. My sister Sarah, in Atlanta, knew that I’d flown here. She’d been waiting to hear what was going on with Brittany.
“Deb. Oh my god.” Sarah responded to the hideous noises that I was making. So far, I hadn’t been able to utter anything intelligible.
“My baby,” I finally wept into the phone.
“What is it?” Sarah paused, then tried again in a wobbly voice. “What’s wrong with Brittany?”
“She has a huge fucking brain tumor!” I managed to scream before I threw my head back and wailed in anguish again. Only this time, I heard someone howling with me.
“Oh God, no!” Sarah cried out. She was screaming “No, no, no!” over and over again. Her husband had come to take the phone away from her. But, even over his calm voice, I could hear my sister howling, just like I was. Gary took the phone from my hand, and I looked up at the moonless sky. It felt right to be screaming together with Sarah.
When I returned to the ICU Brittany was asleep, and a male nurse was on duty at the computer outside. I’d picked at some dinner and attempted to pull myself together.
There was something new written on the whiteboard: “Push Dilaudid slow—3 to 4 minutes to admin. Patient sensitive.”
I left B
ritt’s room to ask the nurse what that meant.
“Your daughter’s upper body flushes and she gets nauseous when this medicine is given to her too fast. She needs it delivered to her system slowly.” He paused and shook his head. “How long did it take the nurse to push the Dilaudid into the IV line earlier today?” he asked.
“Just a few seconds.” I thought back to when Britt got nauseated. “Less than a minute.”
“That’s wrong. The IV administration should take about four minutes. The push should be very slow. Pushing Dilaudid too fast can be dangerous.”
“Is it in her record that she was unconscious yesterday after this drug was pushed too fast?” I asked.
The nurse established eye contact and held it long enough to confirm that he’d heard the question. His head moved almost imperceptibly up and down. “From now on, ask what they’re giving her. With Dilaudid, point to the note on the board and remind them to administer slowly.” He looked into my bloodshot eyes. “I’m so sorry. I know this has been a hard day.”
At his kind words, tears spilled down my cheeks again. “I think Britt needs someone with her tonight. She’s frightened and anxious. Last night she pulled all of her IVs out. She tried to leave the hospital.” I took a breath. “I brought mindfulness recordings on my iPad. They might help in the middle of the night. It’s a meditation technique.”
“The neurologists always say no. The brain injury protocol strictly restricts visitation and stimulation.” He continued to type into the computer. When he looked up and saw my puffy eyes, his face softened. “To be honest, the literature clearly shows that Intensive Care patients do better with family nearby. All their stats are better. Let me look up who the neurologist is on her case.”
“He’s an ass,” I answered.
“Believe it or not, he’s the warm and fuzzy one.” The nurse smiled at me, and I tried to smile back.
“I want to be with my daughter. She heard some very frightening news today, and the diagnosis was delivered in a callous and unfeeling way.” My chin quivered. “I can help keep her quiet and calm. Believe me, it will make your job easier.”
“All right, I’ll call the doctor that’s on call. But he’s going to say no.” He picked up the phone. The nurse put up a fight, referencing the research information, recounting last night’s attempted breakout. Finally I heard what sounded like capitulation.
The nurse hung up and gave me a high five. “Let’s try to find a cot for you.”
What they found looked more like a chair you might be electrocuted in. It was a transfer recliner, high-backed, with metal arms and wheels that locked. I was grateful when they showed me that it could lay flat. The good thing was that it was almost the same height as Brittany’s bed. Sheets, a blanket, and a pillow were provided, and I stretched out next to my sleeping daughter.
Brittany hated the puffy devices strapped to her legs that rhythmically filled up with air and applied pressure to her veins, then abruptly released pressure, only to click on again minutes later. She saw this contraption as a torturous sleep interrupter. Its function was to squeeze her legs in a “milking” action, forcing blood and lymph out. Then when the leg sleeves deflated, the veins would replenish with increased blood flow. This was done to avoid deep-vein thrombosis or pulmonary embolism.
After her attempt at leaving the hospital, Brittany was also required to sleep on a sensor pad that alerted the nurse if she tried to get up. “Momma, come here,” Brittany whispered to me. “I have a plan for this stupid antiwandering device.” She pointed at the pressure-sensing pad on her bed. “I want to pee without a nurse in the room, like a normal human being.”
“Oh, Britt. I don’t want to get in trouble. Let’s just call the nurse.”
“No way. Shush!” Britt hissed at me. “Here’s how we do it. As I slide off the pad, you slide on. It’s just like in Indiana Jones.” Britt winked at me.
I burst out laughing, “Except I’m not a bag of sand, and you’re not the Golden Idol.” I smiled. “If this thing is calibrated it’ll notice the difference in weight. When your chubby momma slides on, it’s going to sound off.”
“I think we could do it. You have to slide in flat on your back.” Britt gave me a thumbs-up.
“You do remember that this ploy didn’t work for Indiana, right? I’m guessing a nurse will come rolling in here just like that boulder in the movie.”
“Where there’s a will, there’s a way.” But she went ahead and pushed the button for the nurse.
After the potty break, we listened to the mindfulness relaxation tape again, and eventually Britt drifted off. I closed my eyes and thought about her willfulness; how she fought each new contraption the doctors brought in. I could only hope that this fighting spirit would help her in the long run.
3
Willful Child
1986—1988, Ages Two and Three
“I never knew a girl to have such gumption,” she’d say. “But I’m not too sure it’s a good thing.”
—Jeannette Walls, Half Broke Horses
Two-year-old Brittany wore a red-and-white romper with white leather sandals. She had a lightweight watering can with a long spout in her hands. Through the screen door, I heard the slap of her sandals on the back porch. She was getting more water on her new shoes and on our dog, Heather, who was following her about, than she was on the flowers.
“Mo’,” she demanded as soon as I slid the screen door open. “Mo’, Mommy.”
I added a little water to the can, not so much that she couldn’t pick it up. Off she went to pour a steady stream on the pavement near the flowers.
“How about we give doggy a treat?” I asked.
Britt unceremoniously dropped the can and ran to me, sandals slapping the cement doubletime. I gave her a piece of dog jerky.
Brittany kept the jerky just out of the dog’s reach. Each time Heather tried to get a bite, Brittany yanked it away.
“Brittany, give the doggy her treat. That’s not nice,” I called.
“No.” Brittany held the treat above her head as the dog panted at her heels. “Mine.”
“Sweetheart, that isn’t your food. It’s dog food.” As I said this, ever so slowly she began to move the jerky toward her lips.
“Brittany,” I said, using my serious voice. “Do not eat the dog’s treat.”
Her eyes locked with mine. The treat hung from her fingers, just in front of her mouth.
“Give it to me.” I started toward her, my hand out.
Brittany popped the jerky in her mouth and chewed, screwing up her face at the taste.
“Spit that out!” I ordered, holding my open palm in front of her mouth.
Brittany swallowed it. “Mine!” she called out triumphantly.
The dog and I could only look at each other in disbelief.
I had graduated college in Texas and married my Dallas high school sweetheart. When it became apparent after seven years of marriage that Brit’s dad and I couldn’t live together another day, I asked him to move out. Within weeks, we were involved in a contentious divorce.
I soon realized that I needed a job that paid more than teaching. A neighbor told me about an opening at a semiconductor sales office almost an hour away. Although this sounded like a foreign world, I did well in the interview and found out I could equal my current pay. My new bosses were supportive of my doing what was necessary to take care of my child. They could be lenient about appointments in a way the school district could not. So I packed my teaching things and became their new administrative assistant. After six months, I was promoted to distribution manager.
With my new work schedule, Brittany’s bedtime ritual became both the delight and bane of my existence. Putting her to bed took over an hour each night. This meant that from age three to six, my child and I engaged in the routine for more than a thousand hours. Not to mention the time invested in watching the Disney movie that the ritual was based on. For some time, we watched Mary Poppins at least once a week. The routine be
came more detailed when her father moved out of our home that Christmas. Britt had an old trunk that I’d filled with vintage hats, bridal veils, and the tiniest high heels I could find. My best friend, Sherri, scoured garage sales and thrift stores for things to add to the trunk. Brittany’s scarves, gloves, and fanciful dresses that dragged on the floor behind her were accessorized with long strings of pearls, and even a sparkling magic wand. The dress-up trunk was a never-ending source of joy.
Sherri bought Brittany a vintage black ladies’ bag to represent Mary’s carpetbag. Soon it contained a mirror, a tape measure, a pair of gloves, a skein of yarn, and knitting needles. But still Brittany wandered around the house with a bereft expression, looking for something she called a “ceejewel.” For the life of me, I couldn’t figure out what we were missing. Eventually, I figured out that she was trying to say “cathedral.” What she wanted was a glass globe with birds flying around St. Paul’s. An ordinary snow globe sufficed.
My British mum, tickled that Brittany was obsessed with an English character, supplied a crisp white pinafore apron, a cameo pin, and British coins, including a tuppence. The nighttime ritual was born. First, I, as Mary Poppins, tubbed and scrubbed Brittany, and then, spit-spot, rolled her hair in sponge rollers. After she donned pajamas, it was time for the tape measure to be drawn from the bag. I had written a note in marker at Brittany’s height: “Brittany Maynard, practically perfect in every way.” This simple measuring never failed to delight her. At my five-feet-seven-inch mark, the tape was inscribed, “Mommy, rather inclined to giggle and always picking up.”
After that, I carried Brittany to her bedroom window, where we gazed out at the night. Brittany wanted to know if storm signals were up, winds from the East. I always assured her that there had been no wind change, even if it was raining. No wind change meant Mary would stay. With all the changes that divorce precipitated in our home, I wanted Brittany to know I would never leave, no matter how hard the wind blew.
Wild and Precious Life Page 3