How I Quit Worrying and Learned to Live In My Broken Body

I was just 26 years old with a brain tumor, overweight, infertile, and scared I’d never see, or function like a normal human being again.
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Rachel Stewart
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I was just 26 years old with a brain tumor, overweight, infertile, and scared I’d never see, or function like a normal human being again.

You know the sound a conch shell makes when you hold it up to your ear? The way the echo of the ocean cradles in your ear? That’s my right ear, but it’s the eternal echo of my pulse throbbing away. 

An audiologist told me that babies can hear their heart beats when they are younger but then grow and forget, putting up mental blocks. Sylvia Plath never did. She could always hear her heart saying I AM I AM I AM.

Sometimes my heart is a whisper in the crook of my ears. Other times it’s screaming. The brain tumor rewired my body for better and worse. But I’m getting ahead of myself.

...

It was 2010 when I found out I had a brain tumor. I was sitting in a sunlit enclave that served as my office. Halfway hidden behind a bookshelf, I picked up my cellphone to see I had a missed call. 

Nonexistent menstrual cycles paired with consistent weight gain had prompted me to ask my OB/GYN if something was wrong. Polycystic ovary syndrome or a benign brain tumor were my options. After uncomfortable ultrasounds and MRIs, I finally had a diagnosis.

I had the latter. The doctor called me personally, asking if there was anything he could do. I told him no, thank you, hot tears spilling silently down my face.

Then came the second opinions, the third MRI, multiple blood draws. Because shouldn’t you be sure before agreeing to brain surgery? Even if they’re going up through your nose, like the Egyptians. 

They promised they wouldn’t chip away at my skull. Just a small incision to let the tumor plop out, all dead weight, extra tissue my body dreamed up out of thin air. 

But my spinal cord fluid could leak from my nose, and if they jabbed in the wrong direction, my body could get confused and push all the salts out of my body and was I sitting comfortably?

My husband and I on New Years, just weeks after my brain surgery.

My husband and I on New Years, just weeks after my brain surgery.

The morning of my surgery, I sat in my husband’s blue Matrix, dented by past car wrecks and run-ins with stray deer, and prayed with him and my mother-in-law. She prayed to Jesus, her Korean accent heavy with worry and faith. 

Then my legs were moving and we cleared the crosswalk and I went in and signed all the papers they make you sign so if you die on the table it isn’t their fault and I never felt more alone or scared, like the morning of high school graduation, on the cusp of a huge pivoting point of change.

And then I was in a room and my husband was rubbing my arms and legs and the nurse said they’d give me a “margarita” to knock my anxiety down and then his hand slipped from mine and the wheels were rolling and I was repeating my name and why I was there and that my mother was allergic to anectine and then I woke up in a room of stainless steel and “King of Everything” was playing on the radio and I asked when would things start and they said it was over, everything was done and then I felt the sledgehammer embedded right between my eyes. 

The warming gown they gave me was ice cold and I began to cry and then the recovery nurse said Shh, shh don’t cry, don’t be upset.

But shouldn’t I be upset? I was just 26 years old with a brain tumor, overweight, infertile, with a ring on my left finger and a mortgage and a real job and now this, out on FMLA and scared I’d never see, or function like a normal human being again. That’s too much for anyone, should I not cry?

Days later, an ICU nurse told me I could cry, that was fine, so I cried while my mother braided my hair that had been tangled by morphine dreams and sweat-filled nightmares. 

My husband crawled into the bed with me later, barely wide for us both and I tried to sleep, tried to dream of when things were better, us laughing, looking up at the summer sky, riding in the car with the windows down, his face brightening when I said something particularly funny, my favorite melody, his unhinged laugh filled with half hiccups and squinty eyes and wild hair curled around my fingers. Can we go back to that? How did we get here?

In late July of 2014, I was asked to be a part of a clinical trial. The drug could help me lose the 50 odd pounds I’d gained since undergoing surgery. Simple blood tests and waist measurements were taken. The clinical trial doctor assured me the weight gain wasn’t my fault, that it was my non-functioning glands and higher-than-normal growth hormone level. 

Three years of trying different diets and exercise routines and feeling like a failure every time the scale moved in the "wrong" direction melted away, like a taking off a heavy damp coat on a rainy day.

The blind part of the trial involved me commandeering odd conference rooms at work where home health nurses would inject doses into my stomach while I had to shield my face or close my eyes. Bi-weekly visits with the doctor involved extra blood work and echocardiograms. 

Despite the pinpricks and multiple surveys I had to fill out, I felt lighter and hopeful. I stood up straighter, I ate less. Placebo effect is a real thing.

A month later, the open trial began. My hunger went away. So did my ability to sleep. I’d lie awake, watching my husband snore, and my mind was full with dull gray spots. I’d shut my eyes only to stare at the glowing screen of my cell phone moments later. Rinse and repeat, for hours on end until it was time to get up and go to work. 

I’d stare at my computer screen at work, trying to properly draft emails and appear alert to co-workers who had no idea what was going on or why I was out of the office every other Monday for three weeks.

Another blood draw, another band aid during clinical trial.

Another blood draw, another band aid during clinical trial.

Multiple blood draws left bruises up and down my arms. My veins like to burrow and hide from needles, so I typically take IVs in my hand despite the pain, but the frequency of labs meant the nurses needed more options. 

The doctor recommended I drink more water to keep my veins from rolling. One office visit found me in the pitch dark while a nurse used a stud finder on my arm to find a good vein. My blood ended up splattering down the side of the hospital bed and onto the tile floor.

My arms hurt for weeks afterward. Eating became a chore. I craved junk food, like Sprite and the cheap ramen noodles I’d lived on in college. 

My husband would take me out to dinner to tempt me with anything I’d like to eat. I’d have a couple bites and then feel exhausted, pushing the plate away. This effect was not what I wanted either. I just wanted a happy medium — the inner peace of knowing when I was truly full — not being tricked into thinking I could live without food.

Once, during an annual office visit where I sat crying my eyes out, my endocrinologist told me I should not let my condition — my bunk glands, my out-of-control-hormones — keep me from living my life.

"Think of it as a minor annoyance," she said.

Honestly? I try not to think about it at all if I can help it.

It’s been almost a year since I began my clinical trial.

At most, I lost 15 pounds. Not bad for months of injections, blood draws, EKGs and no sleep, right?

Once the trial was over, my appetite returned and after a restless month, I began to sleep normally without melatonin or Enya playlists.

Would I do it again?

Someone has to further science, right? Giving my time and blood was a small price to pay for a condition few understand. From what I’ve read about the trial since, although it wasn't that helpful for me, the results were promising, and the medication I was given will continue to move through government red tape.

Since my initial diagnosis, I have raged against the broken machine that is my body. The surgery had to happen, unless I decided to wait and go blind in the process. 

Through the clinical trial, I was able to come to terms with the fact that my health could be far worse off, and my body — and how it reacted to the medication — might actually be able to help others like me, or with other similar conditions.

And how can you hate the physical form your soul lives in? Wouldn’t you try to fix it? Even if it hurt, hurt more than the numb echo the brain tumor created?

If you were me, yes. You would.