In the early months of 2017, my dad began having severe headaches. He was evaluated multiple times by his primary care doctor, who just brushed it off to be migraines. However, my dad wasn’t the type of person to go to the doctor for just anything, he knew something wasn’t right. After seeing a neurologist, they finally scheduled for him to have imaging done of his brain. On May 6th, 2017 my dad was rushed to the emergency department. They informed him that his MRI revealed two golf-ball sized masses on his brain. This was the day my life changed forever.
My dad was taken in for emergency brain surgery on May 8th, 2017. We waited anxiously for hours and hours while he was in surgery. I remember, with the last bit of hope I had in me that day, I asked the surgeon if there was any chance the tumors could be benign, he looked me in the eyes and said “no, I don’t believe so.” I lost it.
They were only able to remove one of the tumors, but everything went well, and he was left with a badass scar. It helped that we were surrounded by so many loving family and friends that day. I remember the first time I saw him after surgery, he had cracked a joke (if you knew my dad, you wouldn’t expect anything less).
We anxiously waited for the pathology reports, to see what type of cancer we were dealing with. We were hoping for the best but expecting the worst. We stood together as a family and were ready to deal with the situation at hand. He did not have to fight alone, and had a very strong support system behind him. Cancer had messed with the wrong family. On May 11th, 2017, the results were in, my dad was diagnosed with Stage 4 brain cancer, otherwise known as Glioblastoma (GBM).
I was young, hopeful and optimistic. I googled the statistics, I knew the prognosis. I saw the 6.8% survival rate, and the life expectancy of 12-18 months. But I also knew that if anyone could beat this, it was my dad, he would be in that 6.8%, he was the strongest guy I knew.
He started standard of care treatment on May 30th, 2017, which consisted of 6 weeks of chemotherapy and radiotherapy (radiation). He would have to attend radiation sessions 5 days a week. I remember he would always want to stop for a chocolate milkshake from Braums on the way home. Those were his favorite other than “squishys” from sonic. The first MRI after standard of care treatment showed shrinkage of the tumor. We were all so ecstatic. He continued chemotherapy, however radiotherapy was no longer a treatment option, as a body can only handle so much radiation. He handled the chemo so well, he was living his life as normal. He continued to work to support his family, and almost made us forget how sick he truly was. By looking at him, no one could tell he was sick, let alone terminally ill. He was so strong. During this time he also started wearing a device called Optune, it was electrode patches that he would place on his head which sent electrical waves throughout his brain in hopes to shrink the tumor. Although my dad did not like having to carry his murse (man purse) with the battery in it everywhere. The next MRI on November 15th, 2017 showed growth, as well as 4 new small tumors. This is when dad decided to change his treatment plan and hit his cancer with full force. We switched oncologists, went to a larger hospital and started a new type of chemotherapy that was stronger, and a much higher dose. My dad knew how serious this cancer was so he wanted them to attack it as best as they knew how. However, as time went on, the scans only got worse. The cancer was showing resistance to the treatment. We were running out of options, nothing was working. We became so desperate that we started looking into clinical trials, one in which my dad traveled to Houston, TX for, but it didn’t end up working out.
He was also taking steroids, which helped to control the swelling in his brain. However, this is not all that they did. He was quick to anger, they turn your loved one into someone you don’t recognize. They made him defensive and argumentative. He stopped these after a while.
January or February of 2018 is when my dad went on short-term disability from work. His memory started suffering, and this is when it started to get hard on my family and I. They had a “last-resort” drug that was a less intense type of chemotherapy and aimed at stabilizing the tumor and improving the quality of life. This was a hard decision for us to make, because once he started this drug he wouldn’t be able to come off it. Being on this drug also made him ineligible for all clinical trials. He had an infusion once every two weeks.
My dad was here, but he wasn’t. It was like he was a different person. The cancer was affecting his memory. His short-term memory is what suffered the most. The easiest way to describe it is he acted like a severe dementia patient. He was slowly fading away before our eyes, I watched the life drain out of him. It felt like we were living in two realities, ours, which was the real reality, and then my dad’s, which was very real to him, but it was his brain playing tricks on him.
- Here are some examples of what we had to deal with.
- He would set his alarm every morning for work, and get dressed as if he was going, even though he wasn’t working at the time. My mom had to secretly turn off his alarm after he fell asleep every night.
- He would pack a bag everyday thinking he was going on a trip but he wasn’t.
- We had to hide the car keys or else he would go places he wasn’t supposed to be.
- He would wake me up every morning asking where the keys were, and sometimes it took me hours to talk him down.
- He would say he wasn’t hungry, or he had just ate, but as soon as I put food in front of him he ate it like there was no tomorrow.
- He would ask about people who weren’t there, even people who have passed.
- He would consistently ask where my mom was, and after telling him she was at work, he would say “I just saw her five minutes ago, she’s here.” She wasn’t there.
- He always wanted to be working on a car. He would try to change my oil everyday.
This continued for a few months.
On September 6th, 2018, my dad had his first seizure in his sleep. We dialed 911 who immediately took him to the hospital. The doctor told us that they didn’t think my dad would ever wake up, or recover from the seizure. However, against all odds, he proved everyone wrong. On September 8th, 2018, my dad was able to stand up, and walk by himself. He wanted to be home, so we made the very difficult decision of putting him in hospice. We knew that this meant we could not continue treatment. We didn’t want to put his body through it anymore, we wanted him to be as comfortable as possible. That night and early the next morning, he was doing well. However he began having seizures again, they weren’t typical seizures. I have never actually been able to describe to anyone what was happening during one of his “episodes”. You had to see it happen to be able to understand. The best my family and I were able to describe them as absence seizures. They lasted about 15-20 seconds at a time, and after the “episode” he was immediately back to normal. However, we cannot technically characterize them as seizures because he was alert during the “episodes.”
As the days went on, the “episodes” became more and more frequent. It was extremely hard for us to watch, and all we wanted was for him to be as comfortable as possible. By the end of the week, having numerous of these episodes an hour was our new normal. He was on several different seizure medications, but nothing was working. We began counting, on his worst day, he had nearly 50 “episodes”. That night, he fell asleep, and became unresponsive. That was the last day that he was awake. On September 14th, 2018, the nurse came in the morning and was surprised how fast he had declined. He also told us that he didn’t think he would make it through the day. He was right. My dad ended up passing around 11am that morning with family at the bedside. I knew I would never be the same person again after that day. My heart has wounds that will never heal.
This cancer took one of the healthiest people I know, and turned them into a terminal patient in what felt like an instant. My dad fought this disease for 15 months before it stole his life. Cancer took everything from me, and I know for some of the people reading this it did for you too. We have been left with ashes, grief, and resentment that lingers. This is glioblastoma, and this is my story. None of which is written down in a textbook somewhere. The disease isn’t in the facts, it’s in the stories of the people who live with it. Make yourself aware.