chilling at the W

It was time for a break. Nearly twelve weeks of uninterrupted chemotherapy, a long summer, and a career change (I’m starting a new job in a week) demanded a week to just do nothing. The family needed to retreat somewhere with a pool and five-star service. We needed to be pampered. But we couldn’t go far. Jordan has another chemo appointment today and an MRI procedure scheduled for Friday. So we chose to stay close to home – to vacation “in town” – so we checked in at the W Westwood, about 30 miles from home.

The W is taking great care of us. We were upgraded to a penthouse suite. It’s a pet-friendly hotel, so our dog Gracie is with us, and between pampering Gracie and pampering Jordan, our family is getting lots of attention. But that doesn’t necessarily mean it’s gone smoothly…

Jordan is in an angry way. She has been for several weeks. Her temper flares without warning. One moment you’re walking with her toward a store and the next she’s stomping off, screaming at the top of her lungs. When she gets that mad, there’s no way to reason with her. It’s like watching a young girl audition for the Linda Blair role in the Exorcist. She hurls insults. She parries with guilt. She goes for the kill with dangerous theatrics.

Sunday morning, she had one of these outbursts while we were at Jerry’s Deli for breakfast. Luc made the mistake of placing his drink order before Jordan.

–Ladies first, LUC-AS!

She tried to get up and walk away, but she was blocked by me in the seating arrangement. I could not get her to sit down. Instead she started in with nastiness.

–Let go of me! Don’t touch your only daughter! You’re treating me like a baby!

Jeanette and I remained very calm. We didn’t raise our voices. We tried to hold her hand and get her attention. We knew what this anger was really about. Experts have been telling us for months that Jordan has a lot of anger towards her disease, but she vents it towards those who are closest to her. It makes sense, though it sounds a bit like psycho-babble.

But today, reality reared its head. Jordan knew that she was checking in to the hospital for treatment the next day. It had come up earlier in the conversation. Now she was exploding. And candor was unleashed for the very first time.

– I hate my body. I hate this cancer. I just want it to go away. I hate these things (kicking at her leg splints). I don’t want to wear them anymore. I’m so mad that I have to wear these. And I don’t want them to take my blood tomorrow. It’s my blood. I don’t want them to take it. I’m sick of them taking my blood. They should … put … it … back!

It was silent for a moment at the table. Jeanette and I were trying not to cry. In a way, what Jordan said was beautiful because it was just so pure. It was as if someone turned off the filter and we got to hear her thoughts as they coursed through her synapses. I held her as much as she would let me. A few minutes later Luc would divert her attention and peace would be restored, but Jeanette and I were affected for the rest of the day. Our daughter is tired, frustrated and disappointed. She wants to be a normal kid, with normal problems. She doesn’t want to live each day dreading needles and treatments. The hardest part is that there is nothing Jeanette or I can do or say to relieve this tension. Jordan is too smart. She knows what’s coming each day. Sometimes she knows before we do, because she senses changes in her body. She often tries to hide these changes from us, hoping they’ll just go away, fearful they might lead to another stay in the hospital or a more painful treatment.

It’s a heck of a kid’s life. She’s been living this way for nearly four years, and there’s no end in sight. She has no set treatment protocol. She has no prognosis. She has no milestones to mark her progress. Instead, she reports to the hospital every week to get connected to an IV and have toxic chemicals pushed into her body. This unrelenting process is taking a psychological toll.

For the most part, the rest of our Sunday was pleasant and relaxing. The kids played in the pool for hours. We ate lunch poolside and watched an Angel game on the tv in our cabana. Jordan took a nice long nap. It wasn’t until we went out for dinner that Jordan’s temper flared again. Again, it came without warning. Again, it was over something that might otherwise seem trivial. The hostess at the restaurant took us to a regular table instead of a booth. When Jordan saw the table she yelled, wheeled on her heels, and started storming toward other diners in search of the exit. When I went to stop her, she kicked me and screamed at the top of her lungs. I rushed her out of the restaurant. Outside, she tried to break free of my grip, shouting at me, lunging toward Westwood traffic.

The hostess came to us outside the restaurant to tell us she had a booth Jordan could have. We went back inside but I was fuming and ready for a drink. After a few minutes, Jordan tried to apologize, but the mood was sour all around. She knew what she did was wrong. I’m sure she knew she’d do it again. Part of me wants to overlook the bad behavior, and part of me wants to keep it in check. This child teaches me something new about adversity every day. I think this latest phase is another, perhaps more challenging lesson.