Dines’ cousins from out East come to town, and we meet them at a restaurant. They don’t know about my sister. These are cousins I have never met. I ask Dines to say nothing. It feels good to have a night off from cancer talk. It feels good to be with people not consumed with pity for me or my family. I realize almost every conversation I’ve had has been about glioblastoma or cancer or someone’s family/friend’s death. Instead, with the cousins, we talk about Telluride, where they have a second home. We talk about the incredible Telluride Bluegrass Festival held every summer. We talk about all the triathletes that live in our town and how the cousins like to bike. We talk about a local boarding school to which their son is applying the following school year. I find myself laughing and actually full of appetite. I never mention a word about what has been consuming us on the home front. I don’t want the fantasy I am experiencing, that life is normal again, to ever end.
We have just returned from another week at majestic Lake Tahoe. We took two trips this summer to our favorite spot. This last trip was terrible for Carolyn. Elevation is not her friend. Most days were spent in her room. The right side of her body has gone almost completely numb and the walks she would take daily –almost two miles – can no longer be part of the routine. Her vision is worsening again. She tells me, squinting, that she always sees two of me standing in front of her. She is using one hand to cover one eye to prevent this. I suggest a patch. “NO WAY,” she says. She falls in the driveway. Chris suggests a wheelchair. “Hell, no!” she yells. I have our assistant, Emma, pick up a walker and place it in the garage. Carolyn sees it and spends the next day livid and talking to no one. Trying to distract her from her anger, I suggest we go out to eat. Her hair has grown back nicely, cut into a pixie style, and she feels better being out. Her taste continues to disintegrate. She is no longer the Carolyn we once knew. She has dyed her hair platinum white (a look I once had in college that she despised). The clothing arriving daily, which she has ordered from the internet, is not in her normal taste and style. We have all noticed these changes but have said nothing. Whatever keeps her occupied and happy is good.
We arrive at Azu Restaurant for dinner at 5pm. The building is visually cool, once a home for the premiere bakery in Ojai. The bread oven is still in the middle wall as a decorative accent from the building’s past. We like to eat early to avoid seeing too many people. I have called before our arrival to request a table in the front room so Carolyn doesn’t have to walk too far before sitting down. It takes two of us to help her to her seat. She is wearing an orange and blue tie-dyed slip dress that is tightly fit, causing her bosom to erupt fully over the collar line. Fliss loudly exclaims, “OH MY GOD, WHAT IS AUNTIE WEARING?” I cover her mouth with my hand.
“Don’t comment, Fliss,” I whisper. “Let’s just try to have a peaceful dinner.” Carolyn cannot read the menu, so I read some items from the specials I think she may like.
She says, “What do you think?”
“You’d like the pork,” I say. Before Carolyn was ill, her favorite thing to cook and eat was pork.
“Okay,” she says, shrugging her shoulders and fiddling with her white table napkin. Chris asks me about work, and I proceed to list my usual whirlwind of activity– a décor installation at an empty home, two run-of-the-mill home staging consults, management of an overly manic client who is becoming impatient with the construction of her home and taking it out on me rather than her contractor. Jokingly, Chris remarks that Dines looks stress-free. He asks, “Did you have the energy to send out an email or two today, Dines?” He and Dines laugh.
“Shut up!” Carolyn yells suddenly. “It’s not funny! She’s going to get cancer like me if you’re not careful.”
“Babe, we’re just joking around,” Chris loudly whispers. “No one’s getting cancer.” Carolyn pounds her pale fist on the wooden table top.
“Look at my sister! Look at me! We both have worked too hard! Lila, you have to stop it or you’ll get cancer,” Carolyn continues. “Chris made me work and work and work. And now I’m like this!”
“Babe, calm down,” says Chris in an even more quieting tone.
“You shut up!” she snaps back. “You gave me cancer, making me work so hard, and I’m not going to have my sister be the same.” The conversation has hit a new low. Chris looks crushed. People at the other tables are staring. The Carolyn we once knew would have given a lot of credit to Chris, who was an exceptional husband and was Carolyn’s number one supporter. Carolyn would never have created a public scene. Her manners have gone out the window. She has turned into a woman no one recognizes. This was exactly what, at the onset of her diagnosis, she said she did not want to become. Dines motions for me to move aside, and he slides in the chair next to Carolyn.
“Remember that great trip we all took to Whistler?” he asks her. “You plan such great trips. Where should we go next? Maybe France to ski at Christmastime.…You and Lila always want to go there…skiing in Chamonix…no working, just lodging and drinking Sancerre with lunch.”
Carolyn is once again calm as our dinner arrives. I have no appetite, and Dines finishes my Caesar salad while talking about dream-like things we can all happily anticipate. Chris and I are silent and order another round of vodka tonics. I write on my cocktail napkin, “We’re going to have to check into Betty Ford soon.” I slide the napkin over to Chris.
Chapter 30, Minneapolis, 1987
YOU ARE SUCH A BITCH
“I can’t believe it! My dreams have come true!” I tell my best friend, Steph, over the phone. She laughs with excitement for me and tells me she’ll see me soon. Bruce McCoy, whom I have had a crush on since the sixth grade, has asked me out to a movie with a group of our theater friends, Steph included. This is the best news of my life! It’s a last minute plan…he’s picking me up in an hour…what will I wear? I have NOTHING to wear! No one is home, and I run down to the laundry room to see if my favorite gray Norma Kamali pants are clean. They are - hurray! The shirt I like to wear with them, however, is not…ugh. I run back to my bedroom. There has to be something that will work…I find myself walking by Carolyn’s bedroom. I peek my head in. She has left her lights on and I see, folded on the foot of her brass bed, her new green Ralph Lauren sweater. It’s perfect. It would look so good with my favorite gray pants. I sit on her bed next to the sweater. Her comforter is slippery sateen, and I slide closer to the folded sweater. It’s a sign. I’m supposed to wear the sweater.
“You look great,” Bruce says when he comes to the door. Bruce is six-foot-four and towers over my five-foot-two frame. He is wearing jeans and a button-up white shirt and black belt. His hair is black and slightly curled.
“Oh, thanks,” I casually respond, smiling the entire way to his car. It’s chilly out, but I hold my peacoat so Bruce will notice Carolyn’s awesome sweater that I’m wearing. He opens the car door for me, and I sink into the oversized bucket seat of his gray and black AMC Eagle. It’s warm inside, and Janet Jackson plays quietly on the stereo. Bruce touches my knee before he puts the car in gear. “I’m glad you’re coming with us,” he says. My heart flutters. The touch of his hand sends chills up my leg.
After the movie, Steph convinces Bruce to drop her off first and me last, despite the fact she lives less than a mile from his house. This is one of the many reasons she is my best friend. “Oh shit, look at the time,” she tells us both as we hop into the Eagle. “My mom’s gonna shoot me. I was supposed to be home ten minutes ago to watch my little sister! Bruce, would you mind dropping me off before Lila? I know it’s out of the way for you to backtrack by our neighborhood, but pleeeeease. It would save me!”
“No problem,” Bruce says.
Alone, parked in front of my house, all I can see is the glow of the street lamp as it hits the snow bank at the bottom of our large front hill. Bruce walks around to the passenger side of his car and offers a hand to help me out of the bucket seat. It’s softly snowing, and snowflakes land on our eyelashes. He helps me over the snowbank to the
icy sidewalk, both of us slipping a bit and grabbing onto one another so we don’t fall to the ground.
“I got it from here,” I say at the base of our stairs. “I can hold the railing so I won’t slip.” My parents think I’m with Steph, not Bruce, and the last thing I want is a confrontation. “I had a really great time,” I say nervously.
“Me too,” Bruce says as he tucks my shoulder-length hair behind my ear. “We should do this, just us, next time.”
“Yeah…cool…I’d love that…” I say sheepishly. Bruce suddenly picks me up and puts me on the first step of the staircase.
“You’re much easier to kiss this tall,” he whispers, putting his hand on my cheek. I giggle. When he kisses me my whole body tingles. His big arms wrap around the top of my hips. It feels like our kisses last forever. I float up the staircase towards the front door, noticing he is watching me until I disappear at the first landing. I hear his motor start, and his car peel away from the curb.
As I reach the front door, I notice a huge pile of clothing. This seems strange. Why is there a pile of clothes outside while it’s snowing? I realize it’s MY clothing. Suddenly, the front door opens. It’s Carolyn. She is holding my pink and green Laura Ashley bedding and she is visibly very, very mad. “You are such a bitch!” she yells. “Enjoying my new sweater? The one I never even wore yet?” She throws my bedding on top of the clothing, which is now snow-covered..
“I’m so sorry, Carolyn. I had nothing to wear and Bruce McCoy FINALLY asked me out!”
“I don’t give a shit if Prince himself asked you out, Lila! I bought that sweater with my own money. It was a fortune and call me CRAZY, but I wanted to be the FIRST to wear it.” Carolyn slams the glass storm door and goes inside. I follow her. Turning around before she heads back up the stairs, she yells “take it off…NOW!” I take it off. I am standing in the front hall in my bra and gray pants. It’s freezing, and I fold my arms in front of me to stay warm. “You’re a bitch,” she says again. “I may have to love you because you’re my sister, but I don’t like you at all right now!” She marches up the staircase, the green sweater in hand, and at the top, slams her bedroom door. I plop down on the bottom stair, head in my hands, and begin to sob.
Chapter 31, Ojai, 2015
NEVER MENTION THIS
After a night of crying about Carolyn’s diagnosis, I make a list of things we can do to tolerate our life. One of my biggest concerns is Matson. As Carolyn continues to worsen almost a year after diagnosis, we sign him up for an impromptu week of surf camp. He seems relieved to have a plan that takes him away from home during the day. Carolyn’s temperament is unpredictable. She is often overbearing with her son in what looks like a last gasp attempt to be parental and hold onto her role as his mother. I understand her motivation, but Matson doesn’t understand her harsh criticisms. He often looks defeated after their interactions, sometimes even tearing up.
By day two of surf camp, Matson is able to stand up on his surfboard! These small joys that occur in his life after a year of continual sadness are truly wonderful. Carolyn has little reaction when I tell her about his accomplishment. Early on in her diagnosis, she would say, “Having a mom with cancer is not what I wanted for Matson.” I know the former Carolyn would have made a huge deal about his surfing success, so I make it a huge deal now. I send all the grandparents the picture his teacher emailed me of him surfing, and I also share it on Carolyn’s Facebook Page. As friends enthusiastically remark on Matson’s accomplishment, I share these comments with him. He beams ear to ear. I love his deep smiles. He hangs on my neck as we read Facebook. He smells like the beach - a combination of sunscreen and saltwater. I am so grateful that this boy has always been partially mine. It makes it less awkward to help parent him. When Matson was a baby, Carolyn had to travel often for her work, taking Chris as her companion. Matson would stay with Dines, Fliss, and me. He called our master bedroom walk-in closet where Dines set up his pack-and-play bed his “bedwoom.” I miss this little kid speak -like the words “BubbaFwy” (butterfly) and “Samich” (sandwich). He and Fliss consider themselves siblings because on most days they see one another. Carolyn and I celebrate this, knowing someday they will closely share their lives, as we share ours.
Matson’s disinterest in engaging with Carolyn is noticeable to the entire family. He avoids the common rooms of the house, often choosing to play in a corner of my bedroom or read quietly in the space between my bed and the wall, where he will not be seen. He used to snuggle with Carolyn after playdates or activities when he returned home. He now averts his eyes as he walks through the family room on the way to his room or mine. He comforts himself with endless bowls of Honey Nut Cheerios until someone notices and says he’s had enough. He has quit running around when playing with his action figures and stuffed animals. Instead, he lies on the floor or sofa and moves the toys in a small circular pattern slightly above his head. His clothes look small. Chris seems not to notice the overeating, tight clothing, or the disengaged demeanor of his son. He moves on remote control with clouded eyes. I don’t know how he is holding on. I buy Matson larger shorts and t-shirts. Matson calls me “mom” sometimes when he is alone with me. I never mention this to Carolyn. I don’t want her to correct him. I think I need to feel he is receiving my mothering as much as he needs to be mothered. A year after I had Fliss, I would secretly pray I would be given another child. It took so long to become pregnant with her that it seemed impossible it would happen again. Dines was always content with one. I never imagined this is how my prayers would be answered. I would have never asked for another child if it meant taking one from my sister. I notice that Matson is deeply protective of his dad too, not telling me when Chris forgets what is needed for camp, school, or snack. We are all transforming somehow, protecting what little we have left of our former life. The whole family is trying to hang on…
Matson is off for kid camp for a full month soon. This, I know, will be the break he needs from home. Kid camp, I hope, will bring Matson countless moments of joy.
Chapter 32, Los Angeles, 2002
JESUS, YOU TOOK LONG ENOUGH
Dines and I are officially transitioning to adulthood - closing on our first house the night prior to my thirtieth birthday. We are so excited when we get the keys at 5pm, we decide to throw our mattress in Dines’ truck and bring it to the new house so we can spend the night. We throw the mattress on the floor of the living room, plopping ourselves on top and taking it all in. I exhale loudly.
“Buying a house is exhausting!” I confess to Dines. Finally, weeks of gathering paperwork, signing loan documents, frantically checking our credit scores, are complete. We’ve undertaken an unbelievable amount of work for the purchase of our 1100 square foot 1927 Spanish Bungalow. It’s cute, adorable, in fact. It has coved living room ceilings, wood floors, and a working log-burning fireplace. The three bedrooms are small, but we have two bathrooms! French doors in the back Master Bedroom overlook a cute postage stamp-sized yard and a converted garage we can rent out to help pay our mortgage after we fix it up. We can put a hot tub on the back patio. We have plans to gate the driveway for extra privacy (and party space). A housewarming is definitely an integral part of the whole house buying experience. We fall asleep while talking and dreaming of our inspired plans.
“Hello! Anyone here?” A voice calls from outside the front door. I recognize the voice as I roll over. Morning sunlight is streaming in from the windows on either side of the fireplace. I make a mental note to figure out window treatments sooner than later. I hear banging on the front door.
“I’m coming, Carolyn!” I try to yell quietly, as Dines is still sleeping. I open the door.
“Jesus, you took long enough. Were you really still asleep? It’s almost 10 am!” Carolyn pushes past me and into the front hall.
“It’s my birthday. I took the day off, the week off, actually… so we can move.” I say, rubbing my eyes. Carolyn hands me a Latte from Coffee Bean and Tea Leaf up the street.
&nbs
p; “Happy Birthday,” She says as I take a sip. It tastes remarkably good and deliciously warm. Mornings are cool in LA in February, despite the fact that it may be eighty degrees by two o’clock in the afternoon.
“Hi, Carolynnnnn,” Dines moans as he rolls over, opening his eyes and squinting to see us in the hall. She pushes past me, slides of her shoes, and dives into our make-shift bed in the living room.
“It’s cute!” she says. “But you will have to get a new front door and landscape within an inch of your life out there.”
“I know…I know…but our first priority is the guest house. We’ve got to re-do that bathroom and put in new carpet so we can rent it out.
“Let me rent it!” Carolyn says enthusiastically. “I’m down here so much for business I totally need a place. It’ll be fun to be here with you guys, too. Right, Dines?” She leans over and tickles him so he’ll respond. He laughs.
“Yes. YES!” She stops the tickling.
“I feel bad charging you. But we can only afford the mortgage if we rent it out,” I say.
“I know,” Carolyn says. “That’s why I’m offering. Chris and I have been considering paying a ton to share a friend’s apartment down here anyway, so we don’t have to stay at hotels.”
A month later, Carolyn and Chris move into their new LA Pied a Terre. It’s nice to have her so close a few days a week. On her days in town, we get our nails done at a Lisa Nail. We laugh that the owner, Lisa, a high-spirited Vietnamese woman, always seems to insult one of us each time we go.
“You gain weight?” Lisa says as I select nail polish. “You look fatter than your sister.”
Carolyn and Chris take yoga with Dines and me at a nearby gym when we are together. We eat Brazilian food or order takeout chicken and veggies from Koo Koo Roo. I confide in Carolyn I think I may want to have a baby. She looks shocked. She and Chris have been together over six years, and it dawns on me she has never really considered having her own.
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