Chapter 22, Los Angeles, 2015

HOPE IS IMPORTANT

“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.”

– Thich Nhat Hanh, a Vietnamese Zen Buddhist monk, teacher, author, poet, and peace activist.

Driving to Los Angeles, the day before Carolyn’s third surgery, we make a plan. We have to go by the hospital so Carolyn can have transponders attached to her head, which she must wear for twelve hours prior to surgery. They look like small suction cups held together by a solid wire cord. She is given a special body shampoo to use on her entire body prior to surgery and other pre-op instructions. Carolyn has become vanity-free as of late and after the hospital, with transponders attached to her head, she asks me to take her to lunch and a manicure/pedicure. We keep our car parked at the hospital and walk a block to a neighborhood salon.

No one takes a second look at Carolyn when we step inside. It dawns on me that being barely a block from a major hospital, this isn’t the first woman they’ve seen with transponders on her head. The salon is bright and airy with floor-to-ceiling windows showcasing the pink back wall. I ask Carolyn what color she wants and she shrugs. I choose one for her, “Malaga Wine,” that I remember her requesting back in Ojai. I eye the small Italian Bistro across the street and ask Carolyn if I should call in an order. “Let’s just go there,” she says.

“Ok,” I answer. Dines and I spent countless evenings in this small restaurant when we lived in Los Angeles. The patio has only four tables and inside there are only eight or so. Carolyn and I sit inside. It’s a warm day, but she has been unusually cold - a side effect from her treatment. The restaurant has warm yellow walls. Pottery from Deruta and pictures of the Italian countryside serve as decor. Carolyn fiddles with the cut rosemary in the mason jar vase on our table. It makes the immediate air around our table smell like rosemary, and I breathe in deeply, relishing the fresh odor. Carolyn is having trouble reading the menu, so I list a few things I think she may enjoy. She decides on Lomita Di Vitello Al Rosmarino - a large veal chop with rosemary and butter served with market vegetables. Carolyn’s appetite has increased due to her pre-surgery steroid dosage. Top shelf food is the perfect match for her top shelf cocktails.

After lunch, Carolyn wants to have a nap. We go back to our hotel on Sunset Boulevard, The Mondrian. I have so many memories of this hotel. Once upon a time, it was impossible to book a room at The Mondrian. The Sky Bar was the hottest bar in town and often the rooms were booked just so its occupants could secure their names on the entry list. “Do you remember hanging out at this hotel, Carolyn?”

“Yes. There were mattresses,” she says.

“That’s right! I remember those - pool side - very avant garde for the time.” The lobby still reflects designer Phillipe Starck’s style. In an odd way, it’s comforting to be revisiting a place from our past. Memories of being twenty and carefree rush into my head. I miss fun, carefree time with my sister. Our conversations of late are all about glioblastoma or cancer treatments. When she naps, I take out my cell phone and open Facebook Messenger. I type her name into the search bar and up pop the exchanges we wrote before she got sick. I realize we haven’t had these online exchanges in over a year. There’s a link to the decadent George V Four Seasons Hotel in Paris. I read her comment that this is where we should spend Christmas 2015. In one post she shares a link to a hilarious YouTube video and asks if she too has “bitchy resting face.” I read articles we share with one another on education, cooking, writing, mothering…God, I miss this back-and-forth daily dialogue! She naps a few feet away from me in the bed, but she seems so far, far away now.

Chris arrives before bedtime and takes over her pre-surgery requirements - a full body shower with special soap and special shampoo. I have helped her with this before, and it’s nearly impossible to execute without the suction cups falling off of her head or something getting tangled in the cord connecting them. I walk down the hall to my room. I am not sleepy, and I know from her two earlier surgeries that this will be another sleepless night. I will look at the ceiling and worry. Rolling on my side, I imagine all of the worst outcomes possible. Shit - I didn’t look up how to explain paralysis or blindness to Matson. Note to self: email the elementary school director in the morning to update her about Matson’s mom and ask what she recommends. Second note to self: Call Mom and ask if she has Dad’s cane. If Carolyn won’t use a walker, she might consider a cane.

“B-O-U-N-C-E…B-O-U-N-C-E.”

Carolyn awakes from her third surgery, remarkably, with no paralysis or blindness. I joke with her that I’m going to call her “Kitty”, because she apparently has nine lives. The aftermath of this surgery feels worse than the last one. She moans about intense head pain. Relieving Chris, I sit silently in her recovery room.

The walls are white, the bedding is white, she is hooked up to multiple tubes and bandaged on her head and arms. Her complexion is gray, like the sky outside her window. The air-conditioning blows cold. She is under four blankets and I sit, watching her sleep, wishing I had brought a sweater. I wish the deli that used to be across the street was still around. A cup of warm soup would feel healing. I sit in the silence of her breathing for two hours until Chris returns. He will stay in LA for the night, maybe two, waiting until Carolyn is cleared by the doctor to come home. I ride the elevator to the parking garage, and a young couple holds each other. The woman is softly crying. The man has bandages on his head. I wonder if he is a brain cancer patient like my sister. Is it the beginning of their journey? In the car I turn on NPR, hoping to distract myself with the latest news. It doesn’t work. I just cry and cry. I am crying for that young couple. I am crying for Carolyn, for Chris, for Matson, for my mom, for my family, for myself. I hold the leather steering wheel with my right hand and I pull down the bottom of my eyes with my left hand thumb and pointer finger. When I do this, the tears fall down my cheeks instead of clouding my vision.

Carolyn comes home to Ojai the next day, convincing the doctor she was unable to sleep in the hospital. She recovers in my quiet guesthouse. Everyone is told not to bother her, but Chris and I check in on her from time to time. Matson and Emma, our helper, are occupied making turtle-shaped cookies for the second grade trade fair. By the end of the week, Carolyn is able to rejoin us for some meals and even a vodka tonic poolside when our friends, Don and Mark, visit from Los Angeles. Carolyn is less herself, but she feels good enough to sit with us. Each surgery seems to take her further away. Carolyn and Mark watch a soccer game. She has never liked sports. She’s also claiming not to like red wine, even though she has been a red wine aficionado and collected it for years.

Chris surprises Carolyn for her forty-sixth birthday with a trip to an elegant Mexican resort she has always wanted to visit. It seems she can’t really remember wanting to travel to the exclusive location and complains about leaving Ojai. I help her pack for the trip and tell her how nice it will be to relax away from everything in California. Her MRI reveals significant swelling but we are told this is normal, and they will evaluate everything in a month at her next appointment. When she returns from Mexico, she will begin another new vaccine treatment for glioblastoma, a drug called Avastin. Insurance in the United States doesn’t cover cutting edge vaccines, and it seems unfair to me that all people don’t have access to this treatment. Carolyn hasn’t been working, and I imagine this will drain so much of the resources and savings she and Chris have put away over the past eighteen years. Chris’ parents have generously volunteered to help fund this treatment, but I can see in their eyes what I am sure is evident in mine. Our hope has shifted to despair. We cannot tell her we don’t think this treatment will work. Bank accounts are drained and savings are transferred to checking. No one believes she will live.