Chapter 17, Ojai, 2015

* SISU

*Sisu - stoic, determination, grit, bravery, guts, resilience and hardiness, expressing the historic self-identified Finnish national character. Every Finn feels “sisu” coursing through his/her veins.

Carolyn’s mind is a mess from forty-two days straight of radiation and oral chemo. Personality-wise she is almost unrecognizable. There are long pauses in our conversations when she can’t think of a word or when she forgets entirely what she is saying. I am relieved there will be a pause in treatment for now. I am hoping some of her missing self will resurface. I’m sure Chris feels this way too. She often can’t remember his name and refers to him as “the other sister.” My foster brother, Tom, who came to live with my family when he was eight, has just left. He and wife, Rachael, brought their new baby, Jackson, to see Carolyn. We had seen Jackson just after he was born on a sister trip to Austin. He is now just old enough to begin to have fun with family. Tiny for his age, he feels like a doll when I hold him. Knowing we could all use some inner strength this holiday season, I purchase crocheted Scandinavian Viking hats for all of the kids. Matson and Jackson wear hats with Viking horns. Fliss’ hat has horns and long orange yarn braids. My brother is a Lutheran pastor, and this is a rare year of relocation for him and his family. Normally, this is a working holiday for them. I want so badly to make every moment memorable, but Christmas is a blur. I vacillate between moments of sentimental holiday joy and frozen moments of terror in which the voice inside my head reminds me this may be our last Christmas with Carolyn. We are blessed that each day she is feeling more rested and relaxed. I notice she is sleeping later in the morning than when she is on her chemo treatment plan. She is able to endure a road trip to the ranch in Palm Springs, and we all relax and rest with her. The sun feels amazing as it hits my pale skin poolside. There is a chilly breeze, but the direct sunlight is warm and feels almost healing. We need this as a family. Carolyn and I love El Mirasol, a Mexican restaurant in Palm Springs, that has been part of the local scene for decades. We order “Cadillac Margaritas”, which are made with top shelf tequila and a shot of Grand Marnier, no salt and on the rocks. The glasses are massive and heavy, and when I look at her sipping hers across the table, it looks as if she’s holding a fishbowl. Carolyn loves Chicharron without the tortilla. I always order cheese enchiladas with red sauce, beans, and rice. It has been our tradition to stop at El Mirasol prior to arriving at the ranch. Sipping a pre-family holiday margarita is mandatory.

Shortly after the new year, Carolyn is able to see our friends, Jon and Christian, who live nearby. Jon is a doctor, and it gives Carolyn comfort to talk about the conversations she is having with her doctors and the treatment plans they are suggesting down the road. Christian keeps our wine glasses full and regales us with stories of his real estate career and former life in San Francisco. It is a fantasy come true to see Carolyn in good spirits. I dread that in less than a week her oral chemo will commence again. Two wine glasses in, I tear up thinking about moments like these that will again be lost. She tells Jon of her doctor’s newest plan for her glioblastoma. She will receive daily oral chemo for a whole year. I can’t help but think, “How can anyone survive a daily dose of chemo for a whole year?” If she is already having trouble articulating thoughts after forty-two days of treatment, what state will she be in a year from now? Will she even be able to speak? Will she forget my name as she has Chris’? How will Matson handle THIS?

Jon tells me to cultivate as much joy as I can for my sister before treatment begins. I call many of her friends. Her childhood best friend, Mary, visits from Minnesota. Her college roommate, Kathy, comes to stay. Art dealer friends, David and Alex, visit from New York. Mark and Don, friends for two decades, drive up from Los Angeles. Carl visits Carolyn again at my home. Friends Andrew and Birge fly all the way from Berlin, bringing their children to see Carolyn. I am trying to stay in the moment, trying to create lasting joy in these small visits with friends. I make sure Carolyn’s favorite rosé is on hand in case she wants to share a glass of wine with one of her guests. I am meticulous about my housekeeping. Managing our chaos by tidying and cleaning is a newfound outlet for my worry and dread. Cleaning is better than thinking about future doom, which leads me down a desperate spiral I don’t dare imagine. Instead, I polish silver or dust the living room. The sound of the vacuum lulls me into a calmer state of mind… “swooosh, swooosh.” At night, I drink one more glass of wine than I should or take a larger dose of Melatonin - anything to distract me and numb the deep down pain.

Chris and I still swim every other morning on the Masters’ Swim Team. The quiet stillness of the world underwater is therapeutic. I breathe as few times as possible while swimming laps. I extend the underwater push off of my flip turns to almost the halfway point of the pool. I do this so I have more moments of silence than noise. I get out earlier than the other swimmers on my team so I can shower and enjoy the sauna alone. I close my eyes often in the sauna so all I see is darkness. I imagine I am traveling through Carolyn’s brain. I see flashes of light. I pretend these are blasts, blowing up her cancer and destroying tumors. This comforts me. Sometimes, in my imagination, I am in her brain on a ride – like the Toy Story ride at Disneyland. I am holding a large laser gun that looks like a Super Soaker. I am now the instigator of these blasts. I am ridding her brain of all unwanted intruders. Matson, I imagine, is often with me, wearing his cape and wielding his sword. Sometimes I sit in stillness. Sometimes I pray. I try to remember every God-focused praise song from my childhood church camp, Cathedral of the Pines. Maybe singing these songs in my head will wake up God, if He is there, to the miracle that needs to happen to save my sister’s life.

In February, Chris’ mom, Joan, generously offers to buy Carolyn a wig. Carolyn and I drive to Los Angeles to pick it out. Doug, a flamboyant, artistic gay man, helps us tour our wig options. He is wearing tight maroon straight-legged pants, a white shirt that is only halfway buttoned-up, and artsy black-rimmed glasses like Buddy Holly. He says he used to be a costumer for the studios, but wigs have always been his favorite thing. I never knew there were so many choices when buying a wig. Raquel Welch has a signature line of wigs. There is a wig company called Sassy Secret, which Carolyn and I think is hysterical. Doug goes beyond his job description selling us a wig, trying on many for us so Carolyn doesn’t have to take off her cancer cap. We leave with a beautiful blonde wig that’s shoulder length and authentic-looking because it’s made with real blonde human hair. On days Carolyn feels good, putting her wig on seems to renew her spirit. Losing hair and having her scars visible, or even having to put on a “cancer hat”, is often terrible. I didn’t know this before Carolyn was sick. I vow never to send a sick friend one of these hats. It’s totally depressing when they arrive in the mail. It reminds Carolyn that she has cancer. Wearing a cancer hat elicits stares from everyone and the “bless your heart” face she hates. Now, when they arrive, I put them away without showing them to her. I text a thank you to the sender and then pretend it never happened.

I schedule an Academy Award party with a walk-in red carpet and silly jackets and jewels and a backdrop that makes us look like we’re at a paparazzi-crazed event. I have our hair stylist, Jen, wash and blow out Carolyn’s wig. Carolyn has a great time with friends, drinking rose and watching the awards. Her dynamic personality, still evident, makes it feel like Christmas. Tomorrow the doctor is upping Carolyn’s chemo dose two times and a quarter.

Tomorrow her year long protocol begins. Carolyn and I decide we will not feel bad about this until she really does FEEL BAD. Find your inner “Sisu.” Stay in the moment, I think to myself… B-O-U-N-C-E, B-O-U-N-C-E is my meditation. I repeat it in my head, slowly, one letter at a time. My ability to spell it again and again is strangely comforting.