Wild and Precious Life

by Deborah Ziegler

  Luckily, Brittany had taken Spanish in school, and I hoped that if she truly needed something she could buy it when she got there. The volunteer/adventure tour entailed working alongside farmers who were learning new organic and sustainable farming practices. The volunteers stayed with a host family on a farm. There was electricity but no television, computer, or telephone. Britt would receive academic credit for participating in the program.

  I was concerned, but I also thought the experience would be very good for Brittany. She had attended school with affluent kids, and this trip would be an eye-opener. The only contact would be from a public phone booth, which would be a forty-five-minute walk away. The brochure emphasized that volunteers would be working hands-on to increase the productivity of the farm.

  After a few days there, Brittany called from the phone booth. She’d walked three miles down a dirt road to get to it. “Momma, I wear rubber boots that come up above my knee because the mud is so deep here. I tie a rope around my waist and pull banana trees down, like a mule.”

  “Don’t hurt your back! I can’t believe they expect young women to topple trees.”

  “Don’t worry, these suckers would blow over in a strong wind—of which there is none. God, it’s so hot and muggy here!” She described the mosquitoes and the snakes, but I could tell she loved it.

  “So, you’re liking it? I’m so relieved.”

  “I love this family, Momma. This brave, strong Costa Rican woman and her beautiful, happy children. Her no-good husband abandoned her, just walked out. She’s trying to make a go of it on her own. Kind of like you, Momma.”

  At the end of one month on the farm, Brittany joined other volunteers for a two-week tour of Costa Rica that included whitewater rafting on an eighteen-mile stretch of the Pacuare River with class-three and -four rapids. Britt’s favorite part was hiking through the Gandoca Wildlife Refuge, where she crossed rivers on rickety suspension bridges and saw adorable white-faced capuchin monkeys, toucans, and tiny poisonous frogs.

  When Ellis brought our suntanned daughter home from the airport, she was happy and relaxed. “People were stoked that I was going to Berkeley,” she told us as she wolfed down a late-night snack.

  I thought I saw Ellis flinch, but to his credit he was elated that she’d had such a good experience. I looked at Ellis and felt a twinge in my heart. His boyish face belied a maturity he’d shown by not getting in Brittany’s way when she wanted to travel, and even helping her get prepared for the trip. He wasn’t trying to hold this butterfly back, catch her in a net, or pin her down as a specimen. He loved her enough to wish grand experiences for her. He loved her enough to freely let her go to Berkeley. He, like Brittany, would probably choose the best school that accepted him. Pain lay ahead for these two, and I couldn’t protect either of them.

  Her glorious trip to Costa Rica stirred something beautiful inside my daughter. She’d been bitten by wanderlust, and as Britt regaled us with stories of the trip, her face softened with kindness. “The children are so happy, Momma, and they have nothing. A new pencil makes them dance around in delight.”

  My daughter’s mind had broadened. Exposure to a different way of living—leaving the comfortable bubble of affluent Orange County—had already changed her in ways I couldn’t begin to define. She had matured more in Costa Rica than in the previous five years of growing up. Travel had done something wonderful for Brittany’s soul.

  17

  No Cake for You

  March—May 2014, Ten to Sixteen Weeks Postsurgery

  While I thought that I was learning how to live, I have been learning how to die.

  —Leonardo da Vinci, The Notebooks of Leonardo da Vinci, trans. Edward MacCurdy

  I texted my sister Sarah, who’d sent us the Eddie Izzard CD.

  We asked for cake, but the MRI said no cake for you! Death within a year—the sonofabitch has grown 20 percent in 10 weeks—it ain’t stage 2 no more! I am so very afraid, and sad hardly captures the pain. I am indulging in why . . . why us . . . right now.

  We fly Britt to Oregon to meet with Death with Dignity doctors on April 8. Will know more after that trip if we need to go to Switzerland.

  Every cell in my body hurts, every bone and joint screams at me, I think I’m getting stomach ulcers. What lies ahead—I must pull enormous reserves of strength from some deep reserve that I haven’t even tapped yet.

  She typed back at 12:35 p.m.:

  Let me know if you want someone else to go with you to any of this.

  My sister Sarah, who worked with counselors and psychiatrists, had asked her colleagues what could help us wrap our heads around what was happening. She sent a CD called When Things Fall Apart: Heart Advice for Difficult Times.

  Gary and I sat in our family room, our two Cavapoo pups at our feet, and listened. Pema Chödrön’s voice crawled under our skin. It was all I could do to sit still. Gary actually stood up and said he couldn’t listen.

  “We need to listen,” I answered, looking up at him and locking eyes. “I need you to listen with me.”

  My husband, his expression perturbed, sat down again.

  Pema said provocative things. She suggested that we may feel like shit, but we had to take a long hard look at things. She submitted that sometimes things fall apart and we must accept that. She advised us to accept not knowing, told us we couldn’t run from fear, and claimed it was helpful to lean toward what made us anxious.

  It was the phrase “leaning toward” that burrowed deep in my mind.

  We listened to the entire CD. “Let’s think about it,” I said. I left my husband in the family room. His body language told me that nothing about this type of thinking sat well with him.

  I thought about Brittany being the beautiful sand castle that Pema described, a glistening creation of sand turrets, shell, and colored glass. I thought of how the tide inevitably came in, and no matter how attached we were to the castle, we watched it melt back into the sea. Was my child going to be a part of something bigger than her life? Was she struggling to stop us from clinging and clawing at her in her last moments of regal, palacelike glory?

  I thought about the panic that gripped my heart each morning when I woke up and realized again that the nightmare was true. Pema said something about fear being close to truth. Was that why I was terrified? Was I teetering on the edge of truth? I realized I needed to breathe in worry, and breathe out comfort. Since I couldn’t ward off death, I needed to just sit and be still with fear, anger, and the tumor.

  Some of what I heard settled in dark, frightening corners of my heart, shedding light and chasing away panic.

  Some of what Pema said still frightened me, made me want to shut the message out of my brain. Sooner or later, people experience something in life that they can’t control. We can’t be good enough human beings, or do enough research, or buy enough stuff, to be secure. Security is an illusion. Natural occurrences in life happen randomly to all kinds of people. Sad, horrible, senseless tragedy strikes for apparently no reason. Every journey begins without hope. It just begins.

  The next day, I stopped Gary in the kitchen and laid my hands on his shoulders. “Gary, I need you to turn toward Brittany. I need you to lean toward her. I need you to be able to say that you will not let her die in a terrible way. Because she is dying, and come hell or high water, I’m going to support her in a gentle death.”

  Gary started to object, but I didn’t allow him to.

  “If you don’t believe this, then I ask you to do it anyway. For me. I need you to tell Brittany that you will keep looking and hoping, but that you are going to make damned sure that she has a place to live in Oregon. I need you, a loving man, to take her in your arms and tell her you understand.”

  We stood looking at each other. Tears filled his eyes. I felt the rigidness of his body.

  “Gary. She needs to feel safe. She needs to know that you have her back.” Tears were running down my face. “I’m going to go to Oregon with her. I’m going to rent a house. I�
��m putting this plan in place—with or without you. But it would feel safer to Brittany if you stepped up. Can you do this?”

  My husband wrapped his arms around me and pulled me in. His voice was choked. “Yes. I will do this.”

  “She needs your physical presence. She needs your arm around her. She needs you to touch her, tell her she’s brave and beautiful.” I sobbed this into his ear. “We have to lean toward the truth. We have to embrace the truth. No matter what that truth is. We can’t run anymore.”

  “We won’t.” Gary held me tight.

  I had become obsessed with these warm sweatshirts and hoodies that had positive expressions on the front. With a little research I found the company, Peace Love World. I ordered a soft pink sweatshirt that was perfect. It said “I Am Loved” in big white letters on the front. Instead, they shipped me a purple sweatshirt that said “Love Is in the Air.” I called the company and explained that my daughter was wrestling with a terminal diagnosis. I told them that “Love Is in the Air” couldn’t be substituted for the one I ordered.

  They sent the correct sweatshirt in white with red letters and told me to just keep the wrong one. This sweatshirt was my way of telling Brittany she was loved. This was my way of saying, “We’ve got your back.” It was ridiculous how much I hung on that sweatshirt. It became a symbol to me. I was leaning in. My daughter was loved.

  I asked Gary to photograph Brittany and me in front of the pool and fireplace at Dan and Britt’s house. I was wearing “Love Is in the Air,” and she was in “I Am Loved.” This was a turning point. On this trip, with these sweatshirts, my daughter and my husband and I planned to go to Oregon. There, we would meet with the palliative care doctors.

  Everything had changed since the visit with the Wiz. The Wiz wanted Brittany to undergo chemo to try to shrink the remaining tumor. But, days later, an MRI showed that the tumor had other ideas. The tumor said, “F-you! Guess what, I’m growing like gangbusters!”

  Britt and I tried to spend time taking walks, baking a tart with fruit from her backyard, going to local nature areas with the dogs. I returned home to take care of Grandpa for a couple of weeks, and then came back up to retrieve my daughter for our initial visit to Oregon.

  Brittany met with Dr. Chang, the young surgeon who had done her craniotomy. She told UCSF to note on her chart that she never wanted to see the Wiz again. Chang talked to Britt about a second craniotomy, an awake craniotomy. He disagreed with Dr. Berger. He thought that given the tumor’s growth, a second awake surgery was the best plan. He would propose a plan to the tumor board to remove more of the tumor mass with her awake to answer questions, so that he could be sure he wasn’t jeopardizing her speech or other eloquent skills.

  He would take more tissue to ascertain what grade the tumor was, because even though he saw this swirly-looking spot that everyone thought was stage four, he couldn’t say for sure unless he had tissue samples analyzed. Dr. Chang understood that Brittany had scheduled a trip to Alaska, and he supported that. The only thing he worried about was the pressure in Brittany’s head. She was off the steroids and wanted to stay off until she got back from Alaska, but we wouldn’t return from Alaska until the end of May.

  Brittany agreed to schedule the surgery for June 2. It meant she would go in for her second craniotomy almost immediately upon returning from Alaska. Britt posted the news on Facebook on April 2:

  Just scheduled my full day awake craniotomy today at UCSF for June 2nd. I postponed just long enough to make it to my big Alaska adventure with Maudie and my Mom. Feeling love, feeling strong . . . T-shirts courtesy of my cool Mom.

  However, Britt told me that she probably wouldn’t have the surgery. “I’m giving myself the option. I’ll think about it.”

  Gary and I hoped that Brittany would go through with the second surgery. We also hoped we would find some cutting-edge treatment. We still hadn’t figured out that none of the experimental treatment studies took patients who hadn’t already been through the cut, burn, and poison regimen. We were still taking our little girl to Oregon. We were meeting with the doctors there at OHSU. We would sit beside Brittany and support her while she applied for Death with Dignity.

  We had turned a corner. We understood that Dan needed to remain gainfully employed in California, and that he would fly up often to visit Britt. We understood that this corner was a hard one to turn. Gary and I had reached that critical point in a complex situation where we were ready to make a relatively small move that would produce a large change. On April 3, I posted on Facebook a summary of where I was.

  During the last three months my beautiful daughter, Brittany Diaz, has taught me a great deal about bravery and facing fear. Somehow, even on pain medication she mentally raced past everyone else in her life . . . leaving us fumbling in a cloud of denial. All of her family members and friends had to play catch-up. She was the first to ask difficult and pointed questions of the doctors. Even now, months later, waking up in those first sleep-fogged moments of morning I sometimes struggle for a microsecond—thinking that Brittany’s brain tumor is just a bad dream. First comes denial—then anger. I know I’m moving through the stages of grief because this week I felt like breaking the plate glass window at the hospital. I was one deep breath away from making a bad situation worse. They say that anger is a necessary stage of grief. I’m trying not to let anger scare me. My life has taught me more about suppressing anger than feeling it. Although, it was good to suppress the urge to break the window, somehow I have to be OK with feeling the anger.

  Britt gave the green Honda Element that I’d given her when she was a part-time nanny during her last year at Berkeley to her friend Maudie. Now a doctor, Maudie was able to talk to Brittany about medical issues. Britt was divesting herself of her possessions, giving away her clothes and rings that no longer fit because the steroids had made her body swell.

  On April 8, Gary and I scooped up our girl and took her to Oregon. We booked a hotel suite with a view of a tree-lined bend on the Willamette River. It was raining, which we understood was the norm. After a massage, Britt and I joined Gary for a delicious dinner.

  Britt was nervous the morning of the meeting. We found the parking structure at SW Moody and Gibbs and parked our rental car. We took the aerial tram to the main Oregon Health and Science University campus. The tram ride lasted three spectacular minutes. Gary pulled Brittany to his side, and I snapped a photo of her ponytailed head as she snuggled in. My two loves looked down at the Willamette River, and Gary pointed at snow-covered Mount Hood in the distance. This photo is one of my favorite pictures ever, my daughter gaining strength and support from her stepdad. It speaks volumes to me about our difficult journey. The back of Britt’s precious vulnerable head makes me tear up every time I look at it.

  We met with a team of doctors at OHSU, along with a social worker. They had already received Brittany’s file from the University of California San Francisco Medical Center and had reserved a conference room. The physicians and the social worker were kind but inquisitive about how Brittany would become a legal resident of Oregon. Gary and I said that we would be helping Brittany financially so that she could get established in Oregon, and that we would move with her. The doctors said that their top neurosurgeon would like to meet with her and consult on her case. He also described comfort care, hospice care, and pain control.

  We listened to the options, other than physician aid in death. Brittany asked questions. She shared with the doctors what she’d already researched about death from a brain tumor, and the process that she understood she would go through if she died with hospice care. I could tell that they were impressed with her calm, cool demeanor and the amount of information that she had about her illness.

  “I’d be happy to meet with your neurosurgeon,” Brittany told them. “However, the two neurosurgeons that I’ve already consulted with at UCSF have had more experience with brain tumors than your top surgeon. You do understand that I am moving to Oregon in order to be legally eligible to us
e the Death with Dignity law, right? I wouldn’t move here for surgery or treatment. If those were viable options, I would stay in California.”

  The doctors referred to the video that she’d sent them prior to her surgery. “We knew when we saw the video that you’d done a great deal of research and thought deeply about how you wished to live the rest of your life.” I saw tears in both of the men’s eyes. Gary and I were swiping at our cheeks. The social worker’s face was full of empathy, and I’d seen her wipe a tear or two away. The only dry eyes in the room were Brittany’s huge, luminous ones.

  Brittany agreed to come back in less than two weeks for a series of MRIs that the Oregon neurosurgeon wanted to do over the course of three evenings. They would administer iron oxide to Brittany intra-arterially. The doctor maintained that the gadolinium used in other MRIs leaked out of the blood vessels, whereas the iron (ferumoxytol) stayed intravascular, allowing for a more accurate scan of the brain.

  “Three MRIs, Britt?” I asked as we trudged back to the tram.

  “It’s okay, Momma. This guy is going to see the same big-ass tumor with swirls of stage four, only he’ll see it with iron, and then he’ll be on board. I don’t want him screwing this up by creating doubt.”

  It was cold on the tram. It had been a long day. We had accomplished a lot.

  On Friday, April 11, Gary and I flew home, and Brittany flew home to Dan. Brittany’s beloved college friend Mina had written and offered a free stay at a lodge in Yellowstone Park. This perked Brittany up after so many awful doctor visits.

  Brittany’s beautiful blond friend Leni stayed very active with Britt. They took their dogs to the local dog park. Leni’s little pup wasn’t old enough to be afraid of Charley the giant.

  Before we knew it, it was time to go back up to OHSU. I flew on Easter day, eating an airport hot dog for my Easter meal. Brittany and I were off together on our second trip to Portland. On this trip we had a very full agenda. We were going to the hospital on three different evenings, getting Brittany’s Oregon driver’s license, and looking for a place to live. I stayed in Oregon with Brittany, ten days in total, until we found a house to rent. Gary and I were giving her some feeling of independence, even if it meant that she was totally dependent on us.