Oct. 2, 2015, 1:41 a.m.
In college, I would often listen to U2 songs on a loop. If you asked Lydia Smith, my freshman bunkbed-mate and lifelong friend, she'd probably remember that the worst offender was "All I want is you," as I tirelessly pined after a high school crush whom I had deemed unreachable. Tonight, I found myself listening to Enya's "Only Time" on a loop, again and again, as I drove home from work. Now, try not to be too critical. First, remember that by all self-reports, I've never, ever thought of myself as the cool kid...cool kids listen to great music, know how to recognize great music through some genetic mutation, all sit together and rock out (coolly) to the latest awesome tune...I know this. I, on the other hand, listen to things that move me, on a loop, which (although never having made me very cool) somehow brings me peace. Enya's lyrics say, "Who can say where the road goes? Where the day flows?"
How long do you think it would take you to be comfortable talking about spinal taps and your daughter in the same sentence? If someone had asked me that when we drove to the emergency room on Aug 8th (a lifetime ago), I probably would have said, without pause, that it would take an eternity or maybe never happen. I now have a different answer....about 1 1/2 months. Today Aila had another spinal tap (3rd in three weeks), where they gassed her to sleep and then gave her chemotherapy into her spine. My Dad took her, and Brian met them at UCSF from work after she woke up. I wasn't there. I'm not sure if that makes me a terrible mother or one grounded in reality, but the good news is that I have no time to wallow in my questions. She woke up and was okay, and after a brief clinic visit, my father and she headed back to Redwood City for a nap.
We've now entered, I think, what can probably safely be called the calm after the storm. The storm was the first month, where we lived out of the yucky hospital room and Aila barely looked at us. It turns out that a lot of that insane behavior was probably the dexamethasone, and I just wish someone had told us that. At the time, we thought we'd lost her forever. Now, although she's not very healthy, she steals her brother's toys with a mischievous smile and sings to herself when I hold her, just like she used to. It feels calm right now, I think, because this is the first full 10 days that we haven't been admitted to a hospital. She's not walking, but she's laughing and making jokes. If we don't look too closely, we can almost pretend that things are the way they were before cancer. Zander wants his "pad" (Ipad), we say no, we yell at Zander, he cries loud enough to make the most resilient parents in the world want to just give him 10 "pads" to get him to shut up...at the same time, Aila sings softly to herself, has a snack, then asks to go to bed without incident. This is how it always was and is now.
But...these days I write a detailed (to the hour) weekly schedule just for Aila's care. It chronicles who (me, Brian, my dad) will be with her at all hours of each day since she cannot walk. Each week, we plan our week, plotting drop-offs and pick-ups from Zander's preschool, incorporating Zander's speech therapy, incorporating trips to the park for Declan, and incoporating Aila's spinal taps and blood draws.
It almost feels like all we have to do is to follow the protocol and at the end, she'll be cancer-free. Almost like an intolerably drawn-out endurance race. IV vincristine at this point in time, IT cytarabine at another, a 28-day course of oral methotrexate at still another....all the while going to the park, to speech, to preschool. Like having accidentally enrolled in a lousy college course that, if you had known, you would have never enrolled in...but now are resigned to see to the end.
I think the problem with this way of thinking is that it's reductionistic. Just start and finish the 3-year chemotherapy marathon with your baby girl, and your family can put this behind you. Sure, okay, we can do that. But wait, my baby has cancer? Most babies don't have cancer. Just practice saying spinal tap and chemotherapy in the same sentence as preschool and park, over and over again. Spinal tap, preschool, chemotherapy, park. Spinal tap, preschool, chemotherapy, park.
No matter how many times I say those words at the same time, they never go together. The reality is, this will probably define us all, including Aila, for the rest of time, in small and large ways, at predictable and unpredictable points in time. It's defining every single thing I do right now, for goodness sake. Yesterday at work, I went downstairs to get a soda from the cafe, and I saw out of the corner of my eye a senior colleague who in the past has caused me a lot of grief...and I didn't even skip even a beat. None of it matters. The funny thing is, it probably never mattered, but I couldn't see that before, when I had less at stake. Now, I want to move back to the mountains in Colorado, watch Brian ride his bike up ridiculous grades, watch the kids breathe in mountain air. I want my surroundings and my life to be a constant reminder of the consonant beauty and fragility of life. I want my work to be meaningful and powerful but maybe not in the ways I had previously thought. It sounds so painfully hackneyed, I know. But that's okay...like I said, I was never the cool kid. And uncool is a-okay with me if it gets our family where we want and need to go.
You are fighting, my sweet angel! Keep it up! We're all right here...
Love, Mom
Comments
meghan 9 years, 2 months ago
I do all of my best thinking to songs on loop too!
Link | ReplyBecky 9 years, 1 month ago
Also, I'm sure a million and a half people have passed on stories of other kids that successfully beat ALL--and, as you and Brian say, all that matters is YOUR kid--but I wondered if you had followed Emily Levan's story back during the 2008 marathon trials. It stuck with me and I immediately thought of it when I read your news. Her blog, twotrials.org, is woefully outdated, but that's the good part: the last entry is about throwing out all her daughter Maddie's cancer meds for good once she was disease free. xo Becky
Link | ReplyGabi 9 years, 1 month ago
You were always the cool kid to me! Living above 96th street qualified you instantly! And I've been known to play the same album on a loop to the perpetual irritation of Tom and Elizabeth.
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