While social media tends to fill in the gaps of the big moments of our lives a few people have asked what happened so I figured I could write it down here for you.
Here’s what happened:
I woke up January 8th with a tinge of nausea and a not quite rested head. I washed myself in a hotel shower with a soap that had more warnings on it than directions. The doctors said it would make me sterile, it would ensure them a “clean canvas.” They treated it like an art project. But it wasn’t, because art projects, if you throw enough passion in them, can’t ever be wrong. This wasn’t that. This was a science project, a wrong cut or stitch can mean failure. You can’t fail art. You can fail science.
I made it to the hospital, took waiting room selfies with my cheering squad, and was ushered back to a lonely room with a dated pattern on the privacy curtain, and a TV too high for me to crane my neck up to see. The nurse told me to put what mattered to me in plastic bag marked “belongings,” and all I could think was, “am I too big for that bag?”
I was a dutiful patient I got marked like a branded cow, poked several times, had long talks with new people’s about intimate parts of my body, the inside of my brain, and slowly fell asleep, this time remembering just vaguely the complexity of the OR.
I woke up not knowing they had started and they told me triumphantly, “you’re ok, they got everything.” I still don’t know whose voice it was but I sort of felt indignant, like, weren’t they going to ask me before ripping MY tumor out of my head?! Then I remembered that was why I was there, begged the nurse for water she wouldn’t give and drifted back to semi-consciousness. I remember it though. Post op is loud and overwhelming and there’s lots of movement, no quiet. No peace. I kept asking to leave there in my semi-conscious state. At one point I opened my eyes to see my parents one on each side of my bed staring down silently. I told them not to watch me sleep, I told them it was too creepy. It made me think of people looking into a coffin, silently, being weirdos.
So I had my two nights in ICU and on day 2, I convinced the nurse to let me put pants on. When I bent over to pull them up, there it was, clear, fast, tasteless liquid pouring from my nose.
I told the nurse, like any good repeat brain surgery patient I told her that the drainage combined with my positional headaches could mean a CSF leak. She casually told me she’d let the doctor know and over the day I had MRIs and tests and I was transferred out of the ICU where my nose fountain continued to pour.
Jason kept noting my giant mastoid air cells in my ear that the doctor had mentioned during surgery. I already knew I had giant air cells, it’s an evolutionary feature so I just assumed it meant I was so highly evolved I didn’t need all this doctoring…
As soon as I told the floor nurse of the leak, 2 residents in their official blue scrubs came in and asked if I could make it happen again. Like a trained monkey I tried to comply but looking down hurt and tears were mixing in. They gave me a sterile cup and told me to “catch it.” Totally not a weird thing to do, you know catch brain juice through your nose so I took the cup with me as I struggled to the bathroom and ta-da! When I bent over there it was.
I gave the cup to my mom who chased down the residents. I was immediately moved back to the ICU. I didn’t even get any general floor orange sherbert. So frustrating.
They told me they’d put a lumbar drain in and see if they could control the amount coming out via the drain to give the surgical site time to heal. I had had a spinal tap before, the needles are long, the procedure is unpleasant. “Don’t worry, we’ll sedate you” said one doctor with a particularly well manicured beard. The doctor I’d seen most was there and that seemed comforting but I was so scared as they asked me to turn on my side, pulled the curtain shut and all went fuzzy.
For the next 3,4,5 (I’m not really sure, the day’s run together) days I had a tail attached to me. About 8-10 inches of some kind of plastic straw was inside my back taking my CSF to a bag at my side. I couldn’t move unless the drain was off so I couldn’t move most of the time.
I didn’t want more surgery, the Herbert removal had already snaked away so much of my spirit, the pain was severe and my heart was heavy. I kept telling myself if you just follow orders your body will heal, you’ll be fine and you won’t have to have more surgery.
My body never listens.
After several days my nose still leaked and so they took me in for surgery. A repair where they take your ear off, leave it hanging, shove the honeycomb like bones in your inner ear full of fat, then seal it up through your ear canal: Rendering you deaf.
The doc said, “her hearing is negligible in that ear, she won’t notice the difference.” I hate that statement, I notice so much, I notice a lot. Negligible my ass. Now my ear is truly decorative and I have an irrational fear it will fall off at any moment.
I woke up from that surgery with a pressure wrap around my head and with nothing but pain to think of.
I did not look cute, I was not happy. I had to start peeing in a “commode” by my bed because the walk to the bathroom threw lme into a coughing fit that led to severe pain that led to lots of tears and bad breathing, my nurse rubbed my back and talked me through it. She said, “there will be a time where you can cry and scream about this and you should, but today, right now, you need to keep it together to survive this.”
So I agreed to pee in the commode. I called it my throne and tried to make it seem really classy.
I liked my nurses, one of them was like a girl friend I wish I had met in class in college, the kind of girl I’d get mani pedis with and see funny movies. She was sweet enough to send me a bottle of nailpolish when I complimented hers. One of the others was like an Aunt I never got to know, sweet and strong and always knowing the right answer.
I trudged through, day after day, and finally after my 10th day in the ICU, 10th day of no fresh air, 10th day of windows that lock from the outside, they set me free. I got a bag full of pills, 2 giant gouges in my skull, one new nailpolish, weird hospital lotion, a cut across my belly, one decorative ear, and a whole lot of exhaustion, but I made it.
I know it was harder on some of you than me, keeping watch, worrying, I was prepared for the worst possible outcome, I was prepared not to wake up, not because I wanted that, I want to live, but hey, I had a good run. But you guys, you fought for me. Worrying and waiting, praying and hoping. That’s what’s really hard.
And if you were there, crying for me before I went back, sitting in the waiting room while I slept unknowingly being cut, waiting by the phone, leaving me your sweaters to bring me comfort, sending good luck charms, or checking facebook or Twitter, thank you.
I very seriously mean it when I say that I couldn’t do this without you. This was really hard. And even healing seems like a scary proposition, so thanks. It means a lot.
Now I have to figure out how to live without Herbert. Or perhaps how to live in his memory. Or even how to live under the light he helped shine on me.
Peace and love,