What it Was Like To Find Out My Dad Has Glioblastoma

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I looked at my dad sleeping in the emergency room hospital bed. His brow was still furrowed from worry and his chin touched his neck. The soft beep of the vitals machines broke the silence that had been hurting my ears all night. I was growing tired of hearing my own heart beat behind my eardrums.  His feet had those non-skid hospital socks on; one was on upside down. We were waiting for the results of a CT Scan. We’d been waiting for awhile.

I ran my tongue over my teeth, letting it linger on my bonded front tooth. I remember the day it happened, in second grade. Chipped tooth at the playground, a lot of crying and some blood. I had a new tooth by the day’s end. My dad made sure of it, he had a friend that helped. We didn’t have a lot of money then. We don’t now.

“Do you have your dad’s insurance card on you?” a lady whispered to me. I looked at my sleeping dad. “No, it’s at home,” I lied. He didn’t have insurance. Hadn’t for a few years.

I’d figure that out later.

The lights were off and streams from the hallway fluorescents stretched into the room, but their fingers didn’t reach my sleeping dad. He was safe for now. I scrolled through instagram to distract myself. I looked at photos on of myself on my profile and realized that I knew that those photos were of a different person, one whose life was about to be different. How different? I didn’t know.

My dad woke up right before two women walked into the room. One was our nurse from earlier. A blonde whose father was a police officer. She was a hard ass, you could tell she took no shit. Her features had softened. She closed the door behind her. It was open before. My stomach hurt. Closed doors and conversations mean bad things.

“So we did find a large mass on the brain.” Her voice lingered between the words “find” and “a large mass”.  The rest came out like “alargemassonthebrain.”

“What?” My dad inched closed to the monitor, which displayed nothing on it. “Oh my god, oh my god. I’m so sorry, I’m so sorry.” He looked at me in tears, as if he were to blame for the monster in his head. “Dad, it’s ok. It could be anything. We don’t know just yet. You will be ok. Calm down. It’s ok. We don’t know anything yet.”

I did know. They knew. We all knew. The pit in my stomach grew and the tightness in my chest knew.



It was May 23. Two days before my 28th birthday. I was some 35k feet up in the air on an airplane, about twenty minutes out from landing in Orlando. Four days earlier my dad had a brain biopsy to determine what the monster in his head was made up of.

“We don’t know what it is but we will take a sample and know within seven to ten days,” Dr. Woodworth said. I said ok, like it was totally normal, to open up someone’s skull and stick a tube down inside of their brain, their body’s central command center. Yeah, just another Friday.

My stomach lurched and t›he plane dropped a few thousand feet. The fasten seatbelt sign came on and the clouds parted to reveal Jacksonville down below. We had begun to land and I was officially a thousand miles away from home.

The window was too small. Pretty soon the opposite wall would squish me against the tiny, square window I had had my face pressed against for the past two hours. I was waiting for it.

I didn’t want to go but my family insisted. “There’s nothing you can do by being here right now, just go and take some time off before things get worse,” they said. “Celebrate your birthday.”

Before things got worse. Celebrate. The pit in my stomach got deeper everyday of not knowing what we were dealing with.

The airplane wifi finally kicked on. I had a text from my sister. It simply said “call”.
I read it as “C   A    L    L.” I felt lightheaded. The nausea dancing around in my stomach climbed up my neck. The word “Call” without any context is never a good thing.

I felt my lower lip and chin tremble, just like it did that one time I left my favorite stuffed animal, my “casey dog”, over at my dad’s apartment when I was twelve. He brought it over late at night because he knew that I couldn’t sleep without it. My eyes filled up and the clouds and lights out of the plane window blended together; a Monet of the lights and skyline of Jacksonville.

I dug around in my bag trying to find something to take the edge off, anything. I had a desperate hope there was something floating around in the bottom; no Lorazepam, no Xanax, no nothing. I would have eaten anything at that point. It was the slowest descent of my life. I needed a downer to get me out of the clouds.

“Are you ok?” The man next to me asked. “I get nervous during landings too.”

I nodded that I was fine. The anxiety and stress became tangible. It was a furry lump in the back of my throat sitting right underneath my tonsils. If I spoke it would fall out, so I stayed quiet.




Social Security Phone Call 1/17, June 2018

“This call will be monitored for quality assurance purposes.”

The robotic voice told me exactly three times that this call I was about to make was going to be monitored. I was on hold for awhile, waiting to speak to someone about my dad’s medical insurance. He’s been retired since ’94 due to a work accident; a story for another time.

“How can I help you? This call is being monitored for quality assurance purposes.”
“Hi, I just need Part B to my dad’s Part A medicaid insurance. He has part A but no part B to cover his treatment costs.”
“Did your dad decline to sign up for part B when it was made available?”
Made available. In 1994. 
“I don’t know. He lost health insurance when he got divorced in 2016 and never picked any up I don’t think. He has brain cancer so this is urgent.”
“Well he will have to wait until open enrollment then in November.”
In November. It was June.
He has brain cancer. He won’t make it to then without coverage now. I filled out a speciality case for disabled people. I know this can get processed because of that.”
“I’m sorry, I think your dad might expire before I can get that processed for him. I’ll keep you in my thoughts.”
Might expire.
Like milk.
Like license plate tags.
Like relationships that have run their course. 

This call is being monitored for quality assurance purposes.



PAC Phone Call 1/2 June 2018

Patient Advocate Center. PAC. Finally, someone to help me. A caseworker named Elizabeth called, she was going to help us. She was going to get treatment started for my dad. She was going to be the super hero to get this rolling.

This call is being monitored for quality assurance purposes. 
“Hi Kaitlin. You’re Steve’s daughter?”
“Yes, I am. Thank you so much for calling.”
“I just need some information. Does he have any type of insurance?”
“No, that’s why we need help. He has medicaid part A but not part B.”
“So he doesn’t have insurance?”
“No, just hospitalization coverage.”
“Getting insurance for a person post cancer diagnosis is not going to work. You don’t buy car insurance after you get into the accident.”
“Ok, thank you for your time Elizabeth.”
“Well, why don’t you try applying for this gra-”
“Goodbye, Elizabeth.”

The dial tone echoed through my ears and rested in-between on my brain. Why was this so hard? Why didn’t my dad matter to anyone?

 

*This is a post I started to write sometime ago but never published. I figured I’d loop it in with my most recent explanation.

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