We’ve had a rough start to Interim Maintenance 1 (our next phase of treatment). I hesitate to post when I’m not in the mood to write, but tonight I just want to jot a few things down – in the mood or not.
5 and a half hours at clinic felt like 12.
We need a new descriptive word for the effects of vincristine on our poor little one’s body. “Crying” and “pain” are simply inadequate. I hesitate to even talk about this here because I know that everyone likes to hear “Everything is great! Leukemia is just a walk in the park.” I know, everyone wants to feel good about this, and sometimes we all can. The past two weeks have truly been wonderful, but we are back on the chemo train for a spell and I can’t pretend everything is flowers and rainbows. I’m sorry if this post is not what people want to hear – if I don’t write though, I lose my mind. Fair warning given. Tonight is not a flowers and rainbows kind of night.
Tonight I don’t feel good about this. Tonight Elsa didn’t feel good about this. None of us feel good about this.
Sweating and screaming. Rigid like a board, back arched, toes spread. Eyes wild and fingers pointing at everything and nothing. I have no idea where she hurts and she can’t tell me. Perhaps everywhere? I can barely keep a hold on her as she writhes and stiffens.
Desperately trying to squirt morphine into her mouth during a momentary pause. Choking and sputtering. A lost dose. Useless.
I remember something! A friend once told me that, when her baby was inconsolable, she would take him outside into the fresh air. Even on the coldest winter night, the change of scenery could soothe.
We run out of the house, barefoot. Curious now, her screams diminish to low moans. From my arms, tear-stained, she glances around the parking lot. Almost against her will, she shows mild interest that now, we are outside. Perhaps, we have left some pain on the doorstep. In the most theatrical voice I can muster, I exclaim, “Look! The beautiful sky! It’s dark blue! We shed a tiny bit of pain down the sewer grate. The trees! They are brown and green and red! Just a little more discomfort melts away into the grass. We jog to the neighbor’s new Halloween lawn abomination. I poke the pumpkin-headed scarecrow and then jump back, howling, “Ow! He got me! Bad pumpkin-head scarecrow!!”
I look like a psychotic, homeless woman at this point. Greasy, matted hair, sweaty, bra-less, cut-off shorts, barefoot, and an equally disheveled toddler slung on my hip. Blue morphine spattered on her bright pink kitty cat jammies. For a split second, I worry what the neighbors think. Then I remember that my kid has cancer and I momentarily debate screaming that to the whole complex . . . just in case.
She’s quiet now. Interested. Distracted. Grinning. We worship our scarecrow deity for the next 10 minutes and the horror of the last 45 minutes slowly fades . . . . .
The energy spent is . . . well, the energy spent is so vast that I no longer have enough energy to describe it further.
She is asleep now. For a few hours. Hopefully we can catch this next round with a dose of morphine before it escalates. Hopefully someone in this house will get more than three hours of sleep tonight. We will talk to her oncologist in the morning about our options. Different medications? Changes in dosage? We will feel better, I know. Flowers and rainbows somewhere just beyond our visible horizon, I hope.
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