“Excuse me?” she asks. Jen walks into the adjacent dining room as her body shakes from laughter. I repeat myself, taking a step in the other direction. “Yes, this is Joyce Fizzman calling from Planned Parenthood. Your daughter has a diaphragm fitting this Monday at 3:45 pm. I’m calling to remind you so she won’t miss another appointment. We had scheduled her last Wednesday, but she called to cancel since your car broke down. I do hope you’ve gotten it fixed so you’re able to drive her here on Monday.” There is silence on the other end of the line, followed by a fuming exhalation of breath.
“Thank you,” Mrs. Johnson says and hangs up the phone. I stare at the black cordless handset and turn around. Laughter erupts. Carolyn is laughing so hard, she is holding her stomach and tears are coming out of her eyes.
“Oh my God…oh my God,” she says. “I’m gonna wet my pants!”
“That was awesome, Lila,” Steph says mid-laughter. She raises her wine glass, and we toast one another. I finish my wine in one giant sip. The sour taste makes me cough. Carolyn pours me another glass.
Chapter 37, Ojai, 2012
FOR A MOMENT WE’RE FLYING
Three months before Dines’ fortieth birthday, I drop Fliss off at evening riding lessons and head to Carolyn’s house to occupy time during the lesson. I do this a lot. Matson is usually at an afternoon activity too, and we have quiet time to catch up and share a glass of wine.
“What are we doing for Dines’ birthday, Lila?” Carolyn asks. “We’d better plan something soon or we won’t be able to get in anywhere.”
“Ugh. You’re right. I just don’t know where he’d like to go other than Lake Tahoe, and I don’t want to go there because we always do,” I say.
“I have an idea,” Carolyn beams. “We will go to Whistler! It’s perfect! Tons of activity for Dines, low Canadian prices, and if we book before the end of September, we save sixty percent.” Carolyn always has a way of finding a five star excursion for an almost unbelievable price. “Plus, I already paid to reserve it, so you can just pay back your half as you can, in cash, so Dines won’t find out about it until his birthday. We’ll make it a surprise!”
Landing in Vancouver, Carolyn, Chris, Dines, Fliss, Matson, and I ride in a limousine to Whistler. Fliss has been dreaming of riding in a limousine, and Carolyn surprises her at the airport. In luxury, we enjoy the beautiful ride out of the city. We spot orcas in the ocean and see beautiful snow-touched pine forests as we make our way into the mountains. Whistler is an adorable little town. We are able to walk out the back door of our hotel and onto the ski lift. The temperature is barely below freezing, and Dines and Chris are thrilled to ski in a thin jacket or sweater. Fliss and Matson are enrolled in ski school. Carolyn and I have time to be alone, which is a rare treat in the years of early motherhood. We try snowshoeing. It’s boring, we decide, but we’re glad we tried it. We cross-country ski, as we always have on trips to the snow, laughing at our terrible form and suggesting moves to one another that might end in a face plant. We end our snowy ski sessions lodging, of course, eating something we probably shouldn’t and drinking a glass or two of wine. Carolyn loves to spa. Her tolerance of the steam room heat far exceeds mine. We spend hours in the hot tub, snow surrounding us. The kids are thrilled that hot chocolate is served poolside. At dinner time, we adults can relax fireside and eat slowly in the wood paneled dining room because the hotel employs a magician, who not only occupies our kids, but captivates them all evening.
One morning, Carolyn announces she has an adventure planned for us. We are trucked up the mountain, to the top of a glacier, where we learn to zip line. The scenery is reminiscent of a storybook winter wonderland. Matson is so little, he looks like bundled-up bear food flying off the mountain top and across the deep gulch below. When it’s my turn, soaring down the zip line as it lightly snows makes me imagine we are vacationing in a snow globe. The gentle hum of my harness hook running the cable is all I hear, and large snowflakes cover the front of my snow goggles. Braver than usual, I stretch my arms into the air, like the wings of an eagle. As I approach the platform, Carolyn stretches her arms, mirroring mine. For a moment we’re flying together, ten stories above the ground.
Chapter 38, Anaheim & Ojai, CA 2015
NOTHING WORKS
We’re taking off again to Disneyland. It’s super convenient to be living not too far from “the happiest place on earth.” I am so exhausted, but it’s Matson’s birthday. He chooses this as his gift (again), and Fliss is thrilled too, so off we go. It’s a crazy trip for me. I think back to last year when Carolyn was first diagnosed. The image of her wearing her cutout knee-high leather boots with navy blue shorts pops into my mind. She is wearing this while helping Matson with homework. In my memory she is so smiley and beautiful. There is no visual clue she is sick.
I need to keep moving, to stay busy to remain afloat. Disneyland will be a great escape. I decide I will do all the danger rides I haven’t done before at a theme park. Matson wants to try them, and I don’t want him to be alone. I feel like I’m on cruise control, day by day. I can’t feel much of what’s happening. Risky rides might throw me back into reality…but nothing works. I am numb and carsick.
On the ride home, the kids sleep. It’s a warm fall night, and I crack open the front car windows. The radio is off, and I hear the hear the hum of the highway. I replay moments in my mind with Carolyn. We are six and eight and painting our dog’s nails red. We are eight and ten and singing Miss Mary Mack, playing Patty Cake on our back patio. We are eleven and thirteen, watching back-to-back episodes of Love Boat and Fantasy Island. We are sixteen and eighteen, sliding down a snowy hill, drinking the Southern Comfort and Diet Apple Slice that we snuck out of the house in a thermos. We are twenty and twenty-two, singing Karaoke in my college apartment. We are twenty-nine and thirty-one, and she is picking me up in a golf cart in Palm Springs before my wedding. The memories come faster as tears well up in my eyes. I wipe my face with Fliss’ sweatshirt. The mile markers pass by as quickly as images of her face flash before me.
At home in Ojai, the holiday season is about to begin. I buy mason jars and ace bandages. The kids cut out black circles the size of dimes. We are distracting ourselves with craft projects – Mummy Jars with votive candles. We talk about a friend’s upcoming wedding in our meadow. The kids want to know if they can be “ring bears” again like they were a few years ago in New York City when friends were married in Central Park. We decide we’ll hang fabric from the trees and put plants and a beautiful rug on the camping platform in our oak grove to transform it into a stage. “Will my mom come?” Matson asks.
“We’ll see,” I answer.
I know Carolyn will not attend the wedding. She is now not wanting to see any outside people, including closest friends and even family. I am the one who usually has to break the news to these friends that Carolyn can’t see them. I never say she doesn’t want to visit. Some of them have traveled far to offer her their love and support. She has gotten to the point where the business of living is incredibly hard. She has stopped putting on her make-up most days. We now ask the woman who does her nails to come to the house, or we bring her to the salon when it is almost closing and empty. She has fallen again in the driveway, the result of a now permanent numbing of her right side. She no longer goes on walks or has the ability to exercise. When I check in on her to see what she needs, she closes her left eye or covers it with her hand. She says she sees four of me. Her face is almost always completely expressionless and she dozes off, sitting on the sofa while I cook or work on my laptop. When she wakes up, she says, “What’s going on?”
I reply, “Oh, just working on a new proposal for work.”
She’ll often ask me again a few minutes later. Her sinuses hurt, and she sticks her finger up her nostril to relieve the pain no matter who is watching. She has begun sleeping in my guest room because we fear her walking alongside the pool on her way to my guesthouse. I feel comforted that I can hear her if she needs me at night. I
want her close. I am working from home as much as possible so she is nearby. Chris and I have gotten outstanding at interpreting what Carolyn needs through playing charades. Carolyn’s vocabulary never fully returns after her third surgery, and it seems to be dwindling more so this fall. She’ll say “I need the____________,” and point with her finger to the other end of the room. She’s drinking coffee, so I’ll say, “Truvia?”
“No,” she says.
“A napkin?”
“No. You know, the hot hot,” she says, holding up her cup.
“The microwave!” I enthusiastically exclaim.
“Yes,” she smiles. She wants her coffee warmed up.
I email her most recent x-rays to Steph. She calls after reviewing them and simply says “I’m so sorry, Lila.” Silence ensues.
“Go on. What specifically are you seeing?” I say, breaking the silence. She proceeds to tell me it looks like the cancer is now in her brain fluid, something Carolyn’s doctor confirms the following week. There is also a new formation at the base of her skull. There seems to be nothing to do but accept defeat.
Chapter 39, Ojai, CA 2015
I’M JUST DONE
Carolyn’s health continues to decline. On most days, I feel worried and over it all. Chris is headed to Korea for work. Charades are in full play at our house. Carolyn’s vocabulary has decreased significantly since her third surgery. She has acquiesced to wearing a patch over one eye from time to time. She should be using a walker, but she continues to refuse. Food still gives her joy, so we talk about food a lot. I try to make or buy her favorites. I don’t know if she remembers these recipes, but making them is cathartic for me. She has quit drinking. I am drinking more. Simple movement is too hard for her to execute, even in a normal state. To be honest, dealing with this reality after work is too hard for me to handle in a sober state. We are all doing the best we can. I am doing the best I can. Eight years ago, I had my elderly father in my guest room. I would kiss his forehead every night before I pushed the medical bed guard into the upright position. Now my sister occupies this space in my home. It is overwhelming. The hallway from the kitchen to the guest room is narrow, and she can hold onto the wall when we all retire for the night. She is sharing Fliss’ bathroom, which has two towel bars to grasp and a sink with a large marble counter. She is able to ready herself for bed, although it takes a very long time. I have learned not to interrupt, as one of the only dignifying aspects that remains in Carolyn’s life is her ability to do a few things on her own. Time doesn’t matter. Accomplishing tasks independently matters. When I hear her shuffle across the tiled hall floor, I know she is headed to bed, and I wait three minutes until I pop my head in, saying nonchalantly, “Oh, you going to bed?”
“Yes,” she replies.
“I’ll see you in the morning,” I chirp while switching off the light.
It’s 3 am, and Dines and I both bolt upright in our bed. “What was that?” I say.
“Oh God,” Dines groans, “I think it was Carolyn.” I turn on the light and he runs to the guest room. “Carolyn! Carolyn! You okay?” he says loudly. “Oh God, she’s in front of the door, Lila. I can’t open it.”
“Goddddddd…oh God,” Carolyn moans behind the door.
“I’m gonna nudge the door, honey, so I can wedge myself in…” Dines says while softly nudging the door in and out, pushing her fallen body slightly each time until he fits through a small opening. He’s in. I hear him lifting her behind the door. I push the door, and it opens.
“Carolyn, are you ok?” I ask, my voice quivering up and down in a panic.
“Bathroom,” she says in desperation. Dines and I carry her to the bathroom. Her legs seem not to be able to help. Thank God Fliss’ night light is on so we can see where we are headed.
“Dines, lift her over the toilet,” I say. He does and I pull her pajama bottoms down.
“I hate this,” she moans.
“I know,” I sympathize as she is placed on the toilet. She is able to wipe herself as I wet the hand towel to wash off her hands. Standing at the sink would be impossible.
“Here we go, babe,” Dines says as he lifts her slightly so I can pull up her pants. Somehow we get her back to bed.
“I don’t want this,” she says.
“I know, Carolyn.”
“I’m done. I’m just done,” she says.
“Sssshh,” Dines kindly shushes as he rubs her back while kneeling at the side of the bed.
“Let’s just sleep now…You are always stronger after some sleep,” I whisper. She falls asleep quickly, and Dines and I head back to our bed. I cry into my pillow so I won’t wake Carolyn. Dines rubs my back now. “I’m so sorry, babe…so sorry…it’s so sad. I’m so sorry,” he repeats to me as I fall asleep.
Chapter 40, Ojai, CA 2015
LET’S DO THIS
I’m up at five am, loading the car with buckets of cut flowers I have bought and gathered for Chris’ party. Major birthdays are a big thing for Carolyn and me. They weren’t particularly big when we were children, but as adults they have become important. Carolyn is throwing the most amazing fortieth surprise party for her husband. She has invited Chris’ lifelong friends from all over the country. Chris’ Great-Aunt Phila has recently passed away, and her house stands empty on a bluff overlooking the Pacific Ocean. I help Carolyn plan this party for months. We name all of the tables after Chris and Carolyn’s travel destinations the past ten years. Her friend, Mike, a Grammy Award-winning musician, is flying in to perform. My friend, Sean, a stand-up comic Carolyn thinks is hilarious, is slated to do a set. Our favorite caterer, Michael, is hired to cook. The cake, designed as an edible marquee reads, “Around the World in 40 Days, Starring Chris Bailey.”
Almost everyone invited has accepted the invitation. Chris’ childhood babysitter is coming. Friends from Minnesota are checking into hotel rooms. Family and friends from Portland, Chicago, Palm Springs, New York, Ojai, Santa Barbara, and San Francisco are all making the trip to celebrate Chris. There is enough tequila in Great-Aunt Phila’s basement to float a cruise ship. We decide margaritas are to be the drink of the night, specifically, “The Carl Margarita,” a drink created by our friend, Carl, that Chris truly enjoys. Carolyn and I are going a day early to Santa Monica to make what seems like hundreds of flower arrangements. We are getting our hair and even our make-up done. It will be a spectacular evening. Carolyn always says, “If we’re going to do this, let’s DO this.” We will indeed. It is one of those big celebrations that we will always remember.
Chapter 41, Ojai, CA 2015
PLEASE JUST A LITTLE BIT MORE
Carolyn cannot remember how long Chris is in Korea and keeps asking when he is getting home. I wonder if she’s hanging on, staying alive, to see him one last time. I call in a hospice nurse, who helps Carolyn with services she needs, like pain medication, and a nurse who visits to bathe her. Dines’ birthday is in two days, and as I wander in the guest room to open the drapes, she asks me what we are doing for it. “Oh, I think things are crazy enough around here,” I say, straightening her blankets.
“Bullshit,” she says.
“You feel like doing something?” I question as I sit on the bed.
“I don’t want you to NOT do it because of me,” she answers.
“I don’t think Dines wants to do anything,” I say.
“Come on,” she pleads.
“What should I do, then?”
“GRILLED CHEESE,” she laughs. I smile. I haven’t heard a laugh out of her in a very, very long time. It makes me chuckle too.
“Grilled cheese? Okay, if that’s what you want, grilled cheese it is.”
“Remember that place with big, big grilled cheese?” she asks. I rack my brain.
“The Minnesota State Fair?” I question. “No!” she says, annoyed, slamming her hand on top of the comforter.
“You sure? They had those amazing cheese curds and Cheese on a Stick,” I exclaim.
“Lila, NO!” she groans, even
more annoyed… “The place that had so many grilled cheese… down there…we’d go!”
Carolyn mimics driving. It dawns on me what she’s remembering!
“Oh, you mean Grilled Cheese Night that we used to go to at Campanile in Los Angeles!”
“Yes!” she smiles with a giggle. “THAT Grilled Cheese!”
“Ok!” I say. “I’ll figure this out…grilled cheese au Campanile for Dines on his birthday.” I stand up to leave.
“Yes!” she says. I remember seeing a grilled cheese truck at an event earlier that year, and I walk to my room to get on my computer and Google it with our zip code.
“Found it!” I yell back to Carolyn while walking back to her room. They have lots of different kinds – even a Short Rib Grilled Cheese!”
“Yum,” she says. She looks so delighted. Her joy has added a rosy hue to her cheeks that is offset sweetly with her pale pink sweater.
“Ok. I’ll call them,” I answer.
Carolyn is supposed to get another vaccine treatment before Chris gets home, but she is saying she wants no further treatments. After her collapse the other night, I am not surprised and honestly, truly relieved. I understand how she wouldn’t want to go on living in this condition. I email her request to Chris.
My dear friend, Shelly, is staying with us and helping care for Carolyn when I can’t and Dines is at work. Shelly is the most patient woman I know. She even has a patient voice. Carolyn adores her and is always happy around Shelly. I let Shelly know she will not need to drive Carolyn to LA as planned this week. “Carolyn is ending her treatment.”
“Oh, I see,” says Shelly, covering her mouth with her hand as tears appear in her eyes. “I’ve ordered the Grilled Cheese Truck for Dines’ birthday per Carolyn’s request,” I say. Her hand drops from her mouth. She looks surprised. I sit down and tell her what’s looming in my head. “This may be The Last Supper. Maybe this is why it seems like such a big deal to Carolyn. She’s insisting we celebrate Dines’ birthday with decadent grilled cheese.” Shelly nods.
The Situation Page 11