Last night was one of the scariest times we've had since becoming a cancer family back in May. The nagging intermittent pain in his abdomen kept him up all night writhing in pain, screaming, wincing, violently vomiting. At some point, he began shooting down all of our comforting suggestions. 'That doesn't work!' he'd scream after each request that he lie on his belly, breathe through the pain, or just shift his position in bed. At times, he didn't want either of us to go near him, opting to lie between us, alone on his pillow. This went on all night, hour after hour.
As midnight turned to 6 a.m., we saw the sunlight peeking in through all the cracks in our curtains. I was scheduled for a 7 a.m. bike ride with my friend Piero. So I went upstairs to email my cancellation, and to email Drs Mascarenhas and Stein. They have been monitoring Pablo's condition all week, and we like to use email to communicate with them in real time, so they have a clear sense of what's going on. Stein emailed back at 8:15, and Mascarenhas called shortly after. Both responses mentioned the possibility of going to CHLA ER for tests. Stein is in surgery at CHLA this morning, and could examine Pablo if we get there in time. Thing is, Jo Ann and Pablo are sleeping (he is laying on top of her—the ultimate comfort position for a child), so the world is going to have to wait until they wake up.
¶ Living under the cancer cloud has not been easy by any means. Laying in bed last night, holding P's hand under the sheets, helping him breathe, I realized we haven't had to deal with oblique physical pain until now. In that moment, 'not easy' got harder.
What's been brewing in Pablo's gut this week is terrifying stuff no matter what age you are. Pablo's gut is kicking out the kind of unpredictable, sharp pain that underlines the dawn of fear in a boy. It's an unfair battle, this kind if pain. You can't see it, you can't ice it, you can't pop two Tylenol and fall asleep and forget about it. Kurt Cobain cited his chronic abdominal pain as a source of lifelong trauma. And we've heard the soundtrack to that ab pain: angular, jagged, propulsive and, oddly, lots of lyrics about wanting to be left alone. Sounds familiar?
Fear is often coupled with future-tripping (adults know this all too well). Now, when a doctor or a nurse enters the room, we can see tension and terror enter his body, and he frequently says 'I'm scared.' This level—any level—of fear is natural. We all pass through this ring of life, and we all need fear. It's a protective emotion that tells us to proceed with caution, to make our boundaries known to others, or, as Mike Myers taught us, to RUN! That said, it is heartbreaking to witness Pablo's organic personality nodules blossoming under the light of a radiation machine, or the florescent tubes of an oncology clinic.
It implies that Pablo is beginning to understand that he is his own person, and although his Mommy and Papa can protect him, he is having his own experience with his own body and with his own mind. I would have preferred to see my little boy come to this realization when we dropped him off at kindergarten and drove away, or at some other such moment. But this is his life—our life—and the one thing I am not is delusional. I understand that Pablo is going to grow physically and emotionally during his year of treatment. We can't push PAUSE on the tape deck of life and transpose all the developmental growth moments onto next year.
As I type, I'm learning a bit more about how I feel (love when that happens). I'm also realizing that we're just having an ordinary, unpredictable, zany day in the life of a cancer family. The only way to stay sane is to expect insanity. The funny thing is, I could apply that line to each era of my life leading up to this one. I've had a lot of practice with the sane/insanity couplet, having learned it a long time ago in a galaxy far, far away.
Why do I keep forgetting that?
¶ Pablo and Jo Ann just woke up. Pablo has no recollection of last night's events. Strange and mystical how the mind works. Someday when he's older, we'll tell him all about it.
We are going to call the docs right now, and see how our day's going to unfold.