Columnist Beth Kassab
chronicles the January day that her husband had a seizure, leading to a brain-cancer diagnosis.
What’s it like for a family to be thrust into a new normal by a sudden diagnosis or chronic illness? I’m learning first-hand.
Many of you have been here before me. Others might one day find themselves here unexpectedly, as I have.
My hope is that, together, we will start a larger conversation about caregiving and navigating an often-complicated medical system.
For my family, our story centers on brain cancer. May happens to be Brain Cancer Awareness Month. But it’s more likely you’ve heard of this disease that will force its way into the lives of nearly 24,000 Americans this year because of household names like Sen. John McCain, who was diagnosed last year, or Vice President Joe Biden’s son, Beau, who died in 2015.
I am very new to this world and, at the same time, feel like I can barely remember what life was like before the Friday afternoon in January that changed everything. Here is how our story begins.
The Seizure
My colleagues will tell you that my desk in our newsroom is a mess. There are piles of paper. Timelines and reports about the Pulse shooting. Spreadsheets I’ve created to track problems at voucher schools. And a bunch of unimportant stuff that just might become useful some day — you know, like that county commission agenda from two years ago. It was from under one of those piles on a Friday afternoon in January that my phone started buzzing.
The first text from my husband, Grady, was an almost daily occurrence and unremarkable in every way: Him: Going to get the kids right now.
Me: Can we do Carrabba’s or something tonight? I’m so hungry. No food here today. (My main annoyance in this moment is that there isn’t enough junk food in the newsroom for me to graze on. If I had only known.)
Then a few minutes after he was home with the kids:
Him: I feel really strange. I feel like I hear a car or house alarm or a game of laser tag going on in my head. I am also smelling and tasting things that aren’t there and I can’t quite figure out what they’re supposed to be.
Me: Oh no. Like a ringing in your ears?
Him: Are these flu symptoms that you have heard of before?
Me: (After a quick google search) I am seeing that sinus pressure from flu can cause tinnitus.
Him: I M (sic) also seeing.(sic) Countdown clock like the space center in my line of vision. We his is Aacary (sic).
That last line from him arrived at 4:26 p.m. It was scary, which is also what I think he was trying to write. I stopped texting and called him. His voice sounded off and I could tell he wasn’t joking around. I immediately headed home.
On the way to my car I called
our primary care doctor, who had just diagnosed Grady with the flu three days earlier. I tried to explain what was going on as I fought Friday afternoon traffic to make the 20-mile commute from downtown Orlando to our home in Oviedo. The doctor wanted to talk to Grady directly, so I gave him my husband’s number.
I made it to State Road 408, which is supposed to be a fast toll road to the burbs but is a parking lot on Friday afternoons. The doctor called me back. He said if Grady was still acting this confused when I arrived home I should take him to the emergency room.
Maybe he just needs to rest, I thought.
He had what had seemed like a mild flu for a few days and started taking Tamiflu prescribed by our doctor. When I left for work that Friday morning, he seemed great.
Now the traffic on State Road 417, the second toll road of my daily commute, seemed to be moving in slow motion. It was taking forever to get home, so I called Grady back. He still didn't sound right and I had him put our 9-year-old daughter on the phone. I told her I would be there as soon as I could.
The next thing I remember is finally turning into our neighborhood and hearing my phone ring. The call, which came at about 5:40 p.m, was from Grady’s number. But when I answered I heard our daughter’s tiny voice, “Daddy fell on the ground and he’s shaking and he can’t wake up.” I’ll be right there, I told her. I have given thanks hundreds of times since then that I was driving down our street when she called. I sped into the driveway, ran into the house and dialed 911.
Grady was on the floor in the living room. I knelt down next to him. His eyes were rolled back in his head and he was foaming at the mouth. He didn’t respond to anything I did or said and his chest was rising and falling at a too-fast and somewhat irregular rhythm.
The 911 operator said something about how to position his head. I tried to do everything she told me to do. I know I kept asking her when the paramedics would be there. I was begging for someone to be there.
It seemed like an hour went by, but I think it was only about five minutes before the firefighters arrived. Our daughter and 7-year-old son, crying and scared, unlocked the front door so they could get in.
I was so panicked that one of
The 911 operator said something about how to position his head. I tried to do everything she told me to do. I know I kept asking her when the paramedics would be there. I was begging for someone to be there.
the firefighters took me and the kids into another room while they worked on Grady. The firefighter asked me a bunch of questions and I’m pretty sure I tried to answer them, but I don’t remember what they were. Another firefighter came in and said they were taking Grady to the emergency room.
Then, just as my mind was beginning to realize I couldn’t leave the kids alone while I went with my husband to the emergency room, one of our neighbors appeared before me like an angel. She was walking her dog when she saw the ambulance and firetruck. The front door was wide open with paramedics coming in and out, so she just walked in and said, “Do you need me to stay here with your kids?”
Yes! My parents can get here in the next hour, but please stay until then, I told her, grateful for the help. The ambulance sped off. I know I got back in my car and drove to the emergency room, but I don’t remember doing it.
At the ER, I was instructed to wait in a little room. When I was allowed to see Grady, he was awake but groggy. He was still confused. But I was so happy that he could hold my hand and talk to me.
One of the hospital doctors introduced himself. They had done a CT scan, he said, and Grady had another seizure in the machine.
A seizure? He’s never had a seizure, I insisted.
“Yes, ma’am,” the doctor said. “Your husband has had a seizure and we’re seeing some swelling on the right side of his brain.”
At one point in the evening, I looked at the doctor and said, “But he’s still going to be OK, right?” The doctor was stone-faced. “Right now, I think he’s pretty sick.”