dance, dance, otherwise we are lost

I wish I could say that I’m sailing through this. But the truth is, I’m not. Every night is harder to get through, the minutes crawl, the bed is too warm, my body too creaky. Nights are the worst part of being here. It’s more and more difficult to fall and stay asleep. The panic that used to find its way if I woke up around 1 or 2 is creeping in earlier, now edging on closer to 8 or 9. It lasts until I somehow fall asleep. My dreams are nightmarish at best, or nothing at all. Last night I dreamt of getting woken up for vital signs. This happens in reality at least twice a night, so now it feels more like 4-5 times a night, thank you brain. My creativity for dreaming is blowing my mind right now, but please, hold your applause.

There’s also a lot of light pollution in here at night, from the nurses' computer screen and the IV pole thing and all the buildings outside my window. I can’t bring myself to close the blinds though, in the event that I may miss my few minutes of sunshine in the morning. I have about 20 degrees of sky between the buildings that offers a few sunbeams around 7am before disappearing behind the adjacent Brigham tower at 7:20. I wouldn’t trade those 20 minutes of sun for sleep. I’ve been clinging to those precious minutes. Unfortunately we’ve been having some lousy weather, so barely light grey mornings continue into dark grey afternoons until the cloud obscured sun gives up at last and I’m left with the blinking red lights atop buildings to warn low-flying aircrafts.

My bones ache. Joints, spine, fingers, hips, legs, all bones in general. This is a good thing, apparently. It means my bone marrow is expanding and reproducing cells. It’s what we need. In order to get out of here, I need my neutrophil/ANC (the infection-fighting white blood cell) count to be at least 500. On Wednesday I had zero. Thursday I had 12, yesterday I had 50. Today I have 80. I have great hopes for tomorrow; we’re holding another body powwow tonight to discuss the game plan for tomorrow and see if we can get above 120. I may be a dreamer, but I believe in this body, guys, cmon. Gimme your best, and I’ll see this thing through. They say it's only a few days now. I am happy at this prospect, elated to be getting so close, I'm desperate for everything outside.

But the past few days have been difficult, I’m hitting a wall. I feel dreary inside. I feel like I’m losing my edge, my strength is being chipped away. The hours draaag their feet. TV is raining me into the ground. Facebook bores me to tears. I'm craving salt so much it's nutty. Reading makes me antsy, I haven’t left the room in over 10 days because of construction on my floor that may infiltrate my compromised immune system. And even when I can leave, the mask I have to wear makes me feel like I’m suffocating. I thought I would take more walks while being here, but I just haven’t. For some reason it feels daunting, maybe more depressing than even the inside of this room. Fluorescent lights steal bits of your soul.

Maybe it’s the weather. Maybe it’s not seeing the sun much the past few days. Mostly it’s probably that I haven’t been outside in the world in almost a month now. I missed August, you guys. I’ve been inside a room for all of August 2013.

I cannot express my gratitude for everyone’s love. Through visits, cards (tons!), care packages, thoughtful gifts, time, food deliveries, bags of coffee, bracelets, facebook messages, humpday videos(!!), phone calls, good vibes, etc. etc. Without you I would have cracked up weeks ago. I’m hanging on here, even though just barely.

Somehow, I will endure this. I will endure this because the rest of my life is waiting. But I’m scared. I’m scared that the next leg is going to be more difficult. I have a short time out of here and then I check right back in for another month, at least. And it’s harder stuff, rougher chemo, stricter foods, more of the little white box... I’m not sure I can do this again. I’m barely doing it the first time. I don’t get much time off to recoup, to gain grounding again before the plunge back in. I feel like this train is speeding up and I’m still holding on to the back trying to run along with the quickening pace. It’s going to get really hard to do that soon.

So this morning, to stem off the sadness, I did the only thing that seemed right. I spent a good 40 minutes utilizing my dance floor to the Capital Cities album. When in doubt, dance. As Pina Bausch says: dance, dance, otherwise we are lost. Here's something to get your heart pumping, from a beautiful film documenting her work, Pina:

I felt so much better. I broke a sweat. I swung my arms and legs into the air in crazy rhythm. My knees held together (they do feel a little wobbly, I’m not quite as free as I used to be). My saggy butt is thanking me. I’m tired of taking turns sitting between my bed and the small variety of chairs in this room. I need something to enliven me and bring me energy and joy. I need dancing. Dancing will continue to be my savior, time and again. Almost nothing is better, in this life.

...And you want to know a secret? In the height of my wild ruckus: hands splayed and knees reaching new heights, upper lip dabbed with perspiration, shoulders wiggling—I quickly glanced across the way into the window in the adjacent oncology tower…and spied a camera and a little red light.

dance, dance, otherwise we are lost: Capital Cities -- Kangaroo Court