On brain surgery and my incredible husband

On my first “walk” around the hospital with John.

An unforgettable and defining moment in the Kivii life was March 3, 2014. That’s the day I had brain surgery two months before our wedding. It’s also a day John further proved he’s the best ever.

I originally wrote the piece below in 2015, on the first anniversary of my brain surgery. I shared it on the anniversary last year, and I’m sharing again today because it’s a day that I can’t help but reflect. I know there are a million causes to donate to these days, all just as important and meaningful as the last. One that I (selfishly) support is the Brain Tumor Trials Collaborative. I’m incredibly fortunate that my surgeon was able to remove my tumor on this day 3 years ago and that all my MRIs since have been clear, but brain cancer isn’t so “easy” for everyone. Research is the only way to improve treatments, quality of life, and life expectancy for brain cancer patients (or any sick person for that matter) and research is expensive. The BTTC raises a good amount of its funding through Head for the Cure and that’s where I like to provide my support. It’s extra special because it’s a 5k and getting back to the point that I could run a 5k again was one of my first priorities after my surgery (second only to marrying John). They have events all over the country, so I encourage you to sign up for one near you, even if you just want to walk and not run. Depending on our photography schedule, John and I hope to be at the 2017 NC Triangle Event in Cary. It’s on April 30, so mark your calendars!

Without further ado, my thoughts on brain surgery and my incredible husband (written March 3, 2015):

John likes to call me the brave one, but a year ago today, all I did was act like a zombie for a few hours, watch some Veronica Mars in a waiting room, sleep for several hours, and then watch basketball with loads of morphine. John’s day a year ago included waking me up, making sure I showered with the special surgical soap, driving me to the hospital, talking to the doctors and nurses, holding my hand while they stuck IVs in me, and waiting patiently for reports, knowing that my skull was cracked open.

His day must have felt like an excruciating lifetime.

I calendar everything

People ask me if the seizure I’d had 10 days earlier was frightening. The bits I remember were frightening, but from that whole day, I only have hazy memories. John was aware and calm and brave for hours. When I began seizing, we were going at least 70mph down I-95 toward Disney World. John had the presence of mind to look at the clock as my seizure started – which is incredible, given the fact that I’d never had a seizure before – and he safely got us to the shoulder where he rushed to the passenger side to call 911 and make sure I didn’t hurt myself while convulsing. I wasn’t conscious for any of this; I can’t even begin to comprehend how terrifying it must have been for him – to watch me shaking and unconscious. Reversing the roles in my mind reduces me to tears and panic.

John stayed calm.

A little thing like brain surgery is *not* going to get in the way of me cheering for my Heels in March.

While my seizure was over before the ambulance arrived, I still wasn’t aware of who he was or even who I was – I was just confused. John gave the paramedics the exact information they needed and helped load me into the ambulance. By that point, “I” was coming back, but I didn’t understand what was happening. John did, but he kept it together to follow the ambulance to the closest hospital. I was so pumped full of drugs that day that I don’t know half of what happened at the South Carolina hospitals, but I do have vivid memories of John helping me into the MRI, John standing there with his hand on my knee as I fell asleep inside the machine, John talking to the doctors, John telling me everything would be okay, John helping me back into our car to return home. At that point I knew I’d had a seizure, but I wasn’t “there” enough to understand what else was going on. All I fully understood was that John was protecting me. I feel like he must have held my hand the entire day, because I don’t remember a moment when he wasn’t standing there. I slept most of the drive back to Durham – several hours. John drove us home. With the knowledge that I had a mass in my brain and the preliminary diagnosis was some kind of cancer.

And he thinks I’m the brave one.

My awesome surgeon at UNC, Dr. Eldad Hadar

He filled in my family, his boss, my boss, anyone who needed to know. He made all the calls to get me a meeting with a neurosurgeon at UNC a few days later. At the appointment, the surgeon gave us the options – let it be and take seizure medication, drill in to biopsy, or have surgery to remove the tumor. We scheduled the surgery for a week later. John spent every moment of those intervening days with me. I was nervous, yes, but I was still on medication that had me pretty zoned out. John didn’t have that kind of help, and I know his nerves must have been shot. He didn’t show it. He watched all my favorite shows with me, brought me to Build-A-Bear to get a comfort animal to bring to the hospital, cheered during Heels games, and watched the Oscars with me the night before the surgery. He did everything he could to make that time as normal as possible. He tucked me in each night. I know now that he would head back downstairs after I fell asleep to try to calm his brain enough to rest himself. I doubt he slept more than 8 hours total in that week, let alone per night.

He wasn’t even my husband yet.

The morning of my surgery with Doctor Bear.

Then, the day of the surgery came. He was calm waiting with me and the rest of my family. He didn’t eat because he knew I couldn’t. He rushed to my side as soon as the surgery was over, then he hardly left it for the entire time I spent in the hospital. The morphine made me paranoid. Like scream out for help paranoid – I probably seemed like a psych patient. John was the only person who could keep me calm and he graciously stayed so I could get sleep. He fed me ice chips when I woke from fitful dozes. He cracked jokes about my “Q-tip” head bandages and the food. For the first several days after the surgery, I couldn’t move my left side, and then over the next week, as the swelling in my brain went down, my muscle control slowly came back. It was exciting to get movement back, but it wasn’t pretty. It was spastic. My hand would jerk up and I had to pull it back down. John would calmly reset my arm in a comfortable position. I could never get comfortable because my body felt so foreign, but he did everything he could to help. I complained a lot, but it didn’t faze him. John brought me a UNC beanie to put over my newly shaved head, which was always cold. He listened as I vented about how frustrating the memory and attention activities the speech therapist had me completing were. He watched as I made progress in physical therapy. He was there to hug me when I stood for the first time and he was there cheering me on as I took wobbly steps a couple days later. He was rarely more than five feet away.

John slept on hospital chairs almost every night I was in the hospital.

This is my “head zipper” after they took the bandages off.

And then he took me home. He helped me up and down our stairs and into and out of the shower. He drove me to my outpatient follow-ups. We knew that the surgeon thought the surgery had been good, but we didn’t know anything about the biopsy right away. We were told that it was low grade and we were very lucky. That was true, but we misinterpreted to mean the tumor was benign. It wasn’t. John held me as the neurologist told us it had been malignant and there was a chance the cancer could come back regardless of how good the surgery was. She talked a lot about life expectancy, and even though she wasn’t saying I was going to die anytime soon, there was just something about that phrase I couldn’t handle. John stayed calm as I sobbed. I know he’s sobbed a lot since then and we’ve sobbed together, but he kept it together for both of us during all the hardest parts.

He’s been so strong.

Trying to take a selfie with my staples before they came out.

In the month after the surgery, he bravely stood by as the 30-some staples were pulled out of my skull. He protectively hovered next to me ready to catch me if necessary as I took my first jogging steps. He drove me back and forth to work when I returned to the office, adding an hour to his commute. He discussed with me the pros and cons of me wearing a wig at our wedding. He never stopped encouraging me. He still hasn’t. Two months to the day after my surgery he finally became my husband.

John takes me to all of my follow up MRIs and waits in the room for the hour-long scan to finish. And he thinks I’m the brave one for just lying there.

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My life expectancy, by the way, is normal as far as we know, but with John by my side, I have very high expectations for our lives.

He’s my favorite.