Wild and Precious Life

by Deborah Ziegler

  In the end, Brittany had the DNR take effect immediately after the surgery. Dr. Chang honored this request.

  They let Brittany go home for a couple of days, to rest, relax, and be with her husband and her beloved furbabies, Charley and Bella. Gary flew home, but I stayed with Dan and Britt.

  Their house was still decked out for Christmas. The first thing I did there was race around cleaning. My priority was her bedroom and bathroom. One of Brittany’s Berkeley buds, a former roommate, wandered in while I scrubbed furiously at the grout in the shower. She asked how I was doing.

  “Okay, I guess.” I pushed hair out of my eyes with the back of a gloved hand. As I gazed at her youthful face, it dawned on me that I was anything but okay. I was freaking out of control. I had just been thinking that if I could only get the shower clean enough, Brittany’s cancer would disappear. As I scrubbed at the tiles, I imagined scrubbing tumor cells away.

  “I’m cleaning because it feels like I’m attacking the tumor,” I admitted, my tears welling up. I stood and turned the water on to rinse the walls.

  “I get that,” she said. “And if that strategy worked, I think it’s safe to say she’d be cured.”

  I laid down my squeegee, stepped out of the shower, and clung to her neck.

  On January 9, just before midnight, Brittany sent Gary and me an email with a link to a YouTube video she’d made to send to a doctor in Oregon. I think she emailed the information because it was too hard for us to talk about. In the video, Brittany spoke of using Oregon’s death with dignity law. Because we were engrossed in the outcome of her surgery and her post-surgery care, it would be a couple of days before either of us viewed the video. We needed to get past the first forty-eight hours before watching her talk about aid in dying. In the hospital, I had promised her that I would back her up. I’d vowed that I’d support her no matter what. I had wanted her to stop talking about dying. I would have promised anything. Though it terrified me, I was prepared to keep my promise at all costs.

  As a single mom raising a child, I had become a bit neurotic about honoring my word. Gary, who was by nature a promise-keeping kind of person, knew that if he told Brittany he would do something, I expected him to do it. We tried to keep every promise, big and small.

  Now I would keep this promise to my daughter, even if it killed me. When Brittany spoke of dying in Oregon, I immediately wondered if there was a way to go with her—and I didn’t mean go to Oregon with her. This thought came naturally. It didn’t shock me, but I was aware that it would shock others, so I kept it to myself.

  For the hospital trip, I bought Britt a new nightshirt, fluffy warm socks, and an eye mask for light sensitivity. I was more prepared after our experience at the community hospital. Dan, Gary, and I took Brittany to UCSF on January 10. Soon she was prepped and gowned for surgery, with a hospital bracelet on her wrist. I looked at her name on the plastic band, and wondered if she would be the same Brittany when she came out of surgery. I looked at her waist-length hair, wondering if I should braid it. I knew the doctors were hopeful that they wouldn’t have to shave her whole head. But there was no time to ask about braiding.

  However, I did make sure to ask for permission to stay in the ICU with Britt after her surgery. I listened as various people told me that this was impossible. I explained that Brittany had tried to rip IVs out of her arms and escape from the ICU at the first hospital. “No one stays in the ICU at UCSF,” an assisting doctor told me. “There are no accommodations. None.”

  Brittany was listening as I waged this war. Finally the doctor acquiesced.

  “I’ll be there when you wake up.” I leaned over and touched the wisps of hair curling at her hairline. “Come back to me,” I whispered into the pink curve of her ear as they wheeled her out.

  Dan and his family were in the cafeteria. I stayed there for a while, but then realized I needed to be in a quiet place. “Gary, I’m going to find the chapel,” I said.

  He packed his laptop and went with me to the “meditation room” off of the main lobby. We entered a small room with a few chairs, sacred and inspirational texts, and a prayer request book. I dropped to my knees in front of a chair and leaned my elbows on the seat.

  I prayed that God would guide the minds and hands of the surgeons. I prayed that He would keep Brittany’s strong heart beating steadily throughout the surgery. I prayed that Dr. Chang wouldn’t accidentally remove brain tissue that allowed Britt to think, speak, hear, or see.

  “This is my child’s greatest fear,” I shared with Him.

  I prayed that the pressure in her skull had been reduced enough by the drugs she’d been taking so that the surgery could be done without brain matter trying to escape the confines of her skull. I prayed that God would heal my daughter. I prayed that, even though I’d been told they only expected to get part of the tumor, that somehow, miraculously, they’d be able to remove it all. I prayed that I would know how to care for her and calm her when she got out of surgery.

  After a while, Gary quietly left the room. Carmen came in and prayed for a while. She touched my shoulder in empathy when she left. When Gary returned and urged me to break for lunch, I joined the others in the cafeteria, but I couldn’t wait to get back to the meditation room. I wanted the quiet, the sound of my breath and heartbeat the only things I heard. I excused myself and retreated to the little room.

  I no longer prayed the ridiculous prayer “Take me instead” over and over. I tried another angle, concentrating on praise. I praised God for the miraculous neuroplasticity of Brittany’s brain, making adjustments over the years so that she functioned normally. I felt awe at her brain’s ability to remap itself. God had not hardwired Brittany’s brain, and therefore it showed flexibility in restructuring its functional organization. I thanked God for her brain’s ability to allow the healthy tissue to take over functions that were lost to the tumor’s invasiveness. Brittany, articulate Brittany, remained so because the right side of her brain had taken over most language functions.

  “My daughter’s brain is already a miracle. Thank you for this miracle,” I whispered.

  I had been kneeling for several hours when I decided to prostrate myself before God. Perhaps with me in this most humble of positions, He would listen to my prayers.

  Two thoughts entered my mind. These phrases were so different from what I’d been thinking and praying, so different from the way I normally stated things, that they sounded like someone else’s words.

  The first was “The tumor is the work of the devil. It is not of God.”

  The second was “I will take back what is mine.”

  I was startled. Never had I equated the abnormal cells growing in Brittany’s cranium with a supernatural force. I’d only thought of her tumor as renegade star-shaped cells taking over the brain. I’d thought of the tumor in scientific terms.

  The first statement, about the work of the devil, sounded ominous. Menacing. Brittany’s tumor, the huge tangle of cells that no one understood, seemed to me more like a strike of lightning. A rare aberration coming out of nowhere, creating a shock wave in our family. The second statement sounded even more ominous to me. It didn’t seem to contain any promise of Brittany’s recovery. And yet it contained elements of a promise.

  Does our mind create these answers, these voices from nowhere? If it was just my mind, why didn’t I invent more comforting statements for myself? Had I tuned into the right channel, somehow accidentally ridding the air of all the static that I normally heard in life by prostrating myself in this quiet place? Or was I getting answers from a Zoltar-like voice in some kind of cosmic fortune-telling vending machine?

  This was not a burning bush. This was not an angel speaking to me. It was just a clear voice, speaking in a way that I didn’t speak. My college education was predominantly in science. I had taught science. Of course I thought it was coming from my own mind. However, I also left room for other explanations, and in my heart, I laid claim to what I’d heard.

  Whateve
r happened with this terrible tumor, God (the Supreme Being/the divine energy of the universe/the mother/father of all mankind) would claim Brittany as His/Her own. I held tight to that. It was so simple, really. As much as I loved my child, something bigger than me, someone infinitely more powerful than me, loved her more.

  I couldn’t even comprehend a big love like this. Loving Brittany was the biggest thing I knew. As her mother, I would do anything for her. Deep in my heart, I knew that this divine energy and power loved my daughter, did not want her to suffer, and that all the stuff people had said about going to hell was hogwash.

  In a sudden moment of clarity, I also realized that the scene in my dream, of Brittany and me in hell, was something I’d seen on a trip to Italy. It was painted on the dome of the cathedral in Florence, Italy. No wonder the dream had been so vivid and scary; it was created from the terrifying images of Satan and his workers in Vasari’s fresco of the Last Judgment.

  My mind and heart felt opened up. The cobwebs of childhood thinking still hung in corners, but light was shining bright on the subject of a powerful all-encompassing love, illuminating the truth. The divine would never hurt my child. No matter where she went with her terrible illness, she was loved.

  Eight hours. I hadn’t seen my daughter in that long. We’d had a message about four hours into the surgery that all was going well. I didn’t feel that I could leave the tiny meditation room for more than a few minutes until Brittany was out of surgery. Could a neurosurgeon buy my daughter her life in eight hours? In spite of all the information to the contrary, I held on to this hope. I knew down to my bones that the best he could do was buy her some time. But the stubborn part of me, the part of me that was still in denial, kept pushing this thought to the front of my mind: What if he came out and said, “We got it all”?

  The other part of me asked, What if he comes out and says, “I’m sorry, but we lost her”?

  While I prayed, Brittany was given general anesthesia. There had been discussion of doing an “awake surgery,” and those conversations had caused a great deal of anxiety. Ultimately, Dr. Chang, conferring with Dr. Berger, had decided on a two-surgery approach. In this first operation, Chang would remove as much cancerous tissue as he could without risking loss of skill sets. It would be less aggressive than the surgery that could be done in an awake state. Later, Dr. Berger would do a second, awake resection surgery to target more risky tumor tissue.

  Britt was prepped using a hair-sparing technique, shaving only a quarter-inch-wide area along the incision. The neurosurgeon made an incision behind the hairline above her left eye and curving in front of her left ear, a bit like a question mark. As he cut through the membrane, he sealed off many blood vessels because the scalp has a rich blood supply. He then folded back the scalp tissue to expose the bone. Using a high-speed drill, he bored holes in a pattern on the cranium. The holes were connected using a fine wire saw until a piece of the bone could be removed.

  A protective covering of membrane, called dura mater—Latin for “tough mother”—was cut with surgical scissors and folded back to expose the brain. The dura is tough and inflexible or leatherlike. When I read about the Latin meaning of “dura mater,” I cried. I needed to be a tough mother. But most of the time I felt vulnerable and soft, like brain tissue.

  Using various instruments, Dr. Chang removed tumor tissue that could be safely taken without damaging speech or the ability to read. Since the surgery was being conducted in the eloquent area of Brittany’s brain, the margin of error was less than a millimeter.

  When the surgery was over, the dura and the bone plate were put back in place. The bone was held in place with titanium screws. A drain was put under the skin of Brittany’s forehead to remove excess blood and fluid from the surgery site. Finally, the muscles were sewn and the skin was stapled.

  Gary was in a waiting room across the hall from the meditation room. The irony for Gary was that I, who suffered from claustrophobia, had stayed in the small and suffocating room all day, yet he’d been unable to take its close confines for more than a few minutes. At times we spoke in the hall, asking each other questions that neither of us had answers for.

  Is this unusually long? How does a surgeon concentrate on the intricacies of someone’s brain for so many hours? Is the surgeon standing? Poor Brittany. Her head has been clamped in one position for so long; what will this do to her already aching neck? How much of the tumor is he able to access? Does the length of the surgery mean that it’s very difficult to get at? Do the chances of a problem increase in relation to the time spent in surgery?

  While Brittany was watched closely in the recovery room and her vital signs were being monitored, Gary came to get me. “She’s in recovery. The surgery went well.”

  In the hall, I hugged him.

  “They got approximately 45 percent of the tumor and necrotic brain tissue.” Gary spoke softly in my ear.

  Was it then that I thought, Only 45 percent? I don’t think so. That thought came later. At that moment, all I could think of was that Brittany had not died on the operating table.

  My daughter was alive.

  Two

  * * *

  Renunciation

  Begin challenging your own assumptions. Your assumptions are your windows on the world. Scrub them off every once in a while, or the light won’t come in.

  —Alan Alda, Never Have Your Dog Stuffed and Other Things I’ve Learned

  9

  Denial

  January 10, 2014, Day of Craniotomy, Continued

  Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle.

  —Elisabeth Kübler-Ross, On Grief and Grieving

  I was terrified to see my daughter in the Neurosurgery Intensive Care Unit, having envisioned all kinds of things. I expected her to have a bruised, swollen face and possibly blackened eyes. I expected her to look like she’d been in a fight and lost. I expected her to look frail.

  But Britt looked beautiful after her craniotomy, although her hair was matted behind a headband of stark white dressing. Her eyes were clear. Her color was good. She was conscious.

  The wave of relief was visceral. For a fraction of a second, I felt my knees wobble. I looked around, but there was no chair in the ICU cubicle. Lots of IV tubes and machines were attached to Britt; not much different than she’d had when first admitted to the ICU ten days ago at the community hospital. I wanted to pinch myself, to make sure I wasn’t dreaming that she looked so good. So well. So alive.

  I was filled with a rush of excessive love. I wanted to hug Brittany, the doctors, the nurses—anyone associated with the hospital. I felt that I’d witnessed a miracle.

  Dan kissed Brittany on the forehead repeatedly, whispering something in her ear. Her big green eyes fluttered open and then drooped closed again. Dan moved away and I went to where he’d been standing.

  I, too, bent to kiss her forehead. “You came back to me,” I whispered.

  Britt croaked, “Water.”

  We were told she couldn’t have any water for a while, but the nurse got me a tiny cup of ice chips and a plastic spoon. I also asked for a chair, as I was staying the night. This resulted in a long explanation about how “no one ever stays with a patient in the Neurosurgery Intensive Care Unit.”

  After more conversation, the suspicious nurse checked the chart and made several phone calls. Someone came with a bucket-shaped molded plastic chair. The back was low and curved, so you couldn’t rest your head. In fairness, a bigger chair would have made it impossible to get to Brittany on that side of the bed. I realized that it would be a long night after a long day, but I wouldn’t leave her alone.

  Before Dan and Gary left the hospital, Gary was allowed to come in with me to the ICU. Gary brightened as soon as he saw Brittany. “You look amazing, sweetheart.” He held her hand. “You came through this with flying colors—just like you do everything. How do you feel?”

  “
Like crap,” Brittany said.

  I pulled Gary aside and told him, “She’s complaining of jaw pain. I don’t understand.”

  “She looks great. She’s a trooper.” He kissed me on the cheek. “Our Britt is very strong.”

  I clung to his shoulder and whispered, “Someone has to come and get me early in the morning, like eight o’clock. I’m going to be falling-down exhausted by then.”

  Gary rubbed my back. “I’ll be here. I’ll take you back to Britt and Dan’s, and you can catch up on your sleep. Dan is taking tomorrow’s night shift.” He held me for a long moment, and then he was gone.

  The male nurse came in every hour to do the same neurological exam that was given to Brittany prior to surgery. The questions. The light in her eyes. The test of pushing and pulling against his arms. As she had before the surgery, Brittany seemed to complete each test easily, though she became increasingly annoyed at being awakened.

  “It seems like every time I escape the pain and fall asleep for a few minutes, you come in again and wake me up,” she told the nurse.

  “I’m sorry, these tests are very important in the first twenty-four hours after surgery,” he answered. “How is your pain right now?”

  “It’s a nine, and getting worse. My jaw is killing me. What did they do to my jaw?”

  I didn’t understand this at all. The nurse seemed concerned about giving her too much pain medication, and asked her if she could wait another thirty minutes. He got an ice pack to place on her jaw. As I sat next to her trying to help keep the ice pack in place, tears rolled down her face.

  “Momma, my jaw is really hurting.” Her lips quivered, and she drew a breath. “It’s hurting way more than the banging of my headache. Why is he making me wait?”