Note: May is Brain Tumor Awareness month. This story is incredibly long so I will be posting this story as a series over the course of May to help bring awareness to brain cancer and its complexities.
I’m starting this blog with the story of Butler’s brain cancer (Gliblastoma), because honestly, it is the catalyst that changed our lives forever. Even 18 months after his diagnosis, and post treatment, our daily lives are still affected.
It is hard to pinpoint exactly when I started to notice symptoms of his brain cancer. He was diagnosed in November 2023, after I had to just about force him to go to the emergency room on Halloween. For about a year and a half I noticed behavioral and personality changes. He was more grumpy, withdrawn, had less patience, and the man I knew with tons of ambition and a “go getter” attitude was fading away. I remember about a month or so before he went to the emergency room he was taking his time getting to work one day; being slow, stopping the truck to look at stray cats, but WE WERE LATE to open our store!! Where was the man who insisted on being punctual everywhere we went? I did not understand what was happening to my husband, but all of these things could easily be explained away by very basic things.
We moved from Florence, South Carolina back to my husband’s hometown of Moncks Corner, SC in June of 2022. This is around the time I was starting to notice his behavioral/ personality changes. I thought it was the stress of closing one store, and opening another in our hometown, moving, or maybe a new baby on the way. It is a lot of pressure being the sole provider for your family. By about April of 2023, Butler started to experience headaches, that soon evolved into full blown migraines. Every day, the headaches were there. I found out (after the fact) that he would open up our mattress store, and then go to sleep in his office because the pain was just too much to handle. He did not disclose the severity of his headaches for a very long time. The behavioral changes became more noticeable, and less easy to ignore.
By October of 2023, I was homeschooling our daughter, taking care of our young baby, and running our mattress store the majority of the time. I didn’t realize it then, but my husband had quit smiling. He had quit enjoying the most basic things in life and had become a shell of his former self. Things like the closing of a car door would make him wince in pain. He was constantly wearing his sunglasses because the lights were too bright all of the time. He was in bed more than he wasn’t. We took him to an ENT doctor, who found nothing, even after taking a CT scan of his face. The ENT doctor sent in a referral to a neurologist, who never called me to schedule an appointment until my husband was in ICU in a come weeks later.
On Halloween, as I prepped the kids costumes, I realized Butler had not left the bed in almost 48 hours. He slept constantly, did not eat, and did not even touch the bottle of water on his nightstand. I decided this couldn’t go on any longer. Even after repeatedly suggesting he needed to go to the emergency room, he repeatedly told me there was nothing they could do for him. Looking back, that made me realize how out of touch he had become. I called his mother crying, asking her to please come to our house and make him go to the emergency room. I was almost mean to him when I tried to get him out of bed to go. At the time, I felt it was the only way I could get this stubborn man to listen to me. Looking back, it is a moment that I regret.
Within an hour of Butler’s mom taking him to the emergency room, a CT scan showed a tumor on Butler’s right frontal lobe roughly the size of a tennis ball. The midline of his brain had completely shifted. His migraines weren’t migraines at all, it was pressure from how large the tumor was. I packed up the kids, not knowing when I would be home again, and headed to the emergency room. He was transferred to Roper St. Francis Hospital in West Ashley that night. There wasn’t a single pain medication that could put him at ease. Morphine, Fentanyl, nothing touched it. Finally, the doctor gave him Dilaudid, which apparently is not handed to patients very freely. Immediately, Butler made the comment he did not feel right, and his heart rate dropped to 32 BPM. I told the nurse to note in his chart his body did not react well to the Dilaudid, and not to administer anymore to him. In between the time he was given the first dose, transferred, and me getting to the hospital the next morning, he was given 2 more doses. He was taken to CT 10 minutes after his 3rd dose, and when they wheeled him back to the room, I witnessed him code. He had a heart attack, and had a pulmonary embolism as a result. I thought I was watching the love of my life die right there, and I fought passing out as hard as I could. Our life was falling apart before my eyes.
His doctors initially scheduled his craniotomy and tumor resection for November 3rd, but after his heart attack they decided to operate immediately. On November 1, at 3:22 pm, Butler’s neurosurgeon worked to remove the very large tumor that was pressing on his brain.
This concludes part one of Butler’s Brain Cancer story. Follow along for part two.
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