Aug 15, 2017
TRANSCRIPT
This is Episode 001 of Glioblast-O-Cast. How did I know I had a brain tumor?
Hello. Welcome to Glioblast-O-Cast, the podcast about life beyond glioblastoma. I am your host, Meg Turecek.
In this episode I am going to start at the beginning and tell my story of how did I know I had a brain tumor. And after that, I'll share one thing that I learned from this experience.
So to start at the beginning, how did I know I had a brain tumor.
It was 2015, Christmas Eve morning about 3:00 a.m. I was woken up by strangers in the bedroom telling me to get dressed and come downstairs. So, of course, the only thing I was thinking about was do I need to make coffee? We have guests, so I probably have to make some coffee.
Well, it turned out we didn't actually have guests, but it was the paramedics from the ambulance my boyfriend called because I had had a seizure in my sleep. All they could tell me is it seemed I had a seizure and I needed to have more than one for it to be epilepsy and did I want go to the emergency room. I just wanted to sleep, so we didn't go to the hospital.
Celebrated the holidays, and I decided I would call the family doctor and see her at the earliest possible appointment, which I did. And she told me the exact same thing that the paramedics did, you need to have more than one seizure for it to be epilepsy, which was scarring me, I can tell you. I didn't remember the seizure, but I'm so thankful that my boyfriend decided to call for an ambulance.
So when I saw the regular doctor and she said the same thing, she said I can wait and see if I have another seizure, which it was possible that maybe I wouldn't and it was a one‑time thing. But I was really, really curious. So I said I need to find out what's going on.
It was almost a month after my seizure, I had an appointment with a neurologist. When I met her, she said the same thing that my doctor said, which was the same thing that the paramedics said, you need more than one seizure to be epilepsy.
I told the neurologist, I still want to know what happened. So she decided to order an MRI.
I had the MRI. Luckily for me she believed me and listened to me, and that was really, really important. Because when I got the results for the MRI, which was the day before my 49th birthday, she told me I had a lesion on my brain. Didn't really say brain tumor, but she asked if I had been anywhere where I could have gotten some kind of a parasite.
So that was my thinking. I was really kind of scared about that. Because nobody wants to have bugs growing in your head. So it was a whirlwind. Immediately I needed a mammogram in case it was breast cancer that metastasized to my brain. This scared me because my mother had breast cancer, and she had died from ovarian cancer.
My boyfriend was away at work at the time three hours away. He was not staying at home. When he called to check on me to see what my appointment had said, I told him, it's not good. It's just not good. He said, you don't have to say anything more. I'll be there. And he was there for the night. He had to get up at the crack of down the next morning and go right back to his work. And then he came back again that Saturday night for my birthday. We tried to celebrate my birthday at the pub. Of course, there was no drinking for me because I was on seizure medication.
The following Monday I had a CT scan. We met with the neurosurgeon, and he gave me basically three options. One was we could wait and see because we could not tell what it was because it was small. He could do a biopsy. But then a biopsy meant cutting through good brain tissue or it also meant they would have to go in again to do an actual surgery.
We decided to take the option he wanted us to take, which was full surgery. Just take the thing out of my head. My craniotomy was scheduled for the 18th of February. We had an uncomfortable conversation with the anesthesiologist, who basically told me if we had the operation I would die from it because of the positioning that I needed to be in. My doctor was going in through the back of my skull, so I had to be seated for the whole operation. Thankfully for me I was unconscious for the whole thing.
So the night before surgery, the anesthesiologist gave me the talk: You're certainly going to die from this operation. That was a scary thing.
So then when I was waking up from surgery, there was a complication, which happens. I had a punctured lung. I'm still unsure as to how that happened, but as I was coming out of the anesthesia, they couldn't give me any medication for the pain when they were putting in the chest tube. They basically told me, don't move. We have to put a tube in. Stay still. I can tell you I remember that.
So with a punctured lung, I ended up staying in the hospital for five days. Went home and waited for the pathology to come through and waited for the surgeon to be available.
A month after I was told I had a lesion on my brain I got the diagnosis that confirmed it was a glioblastoma. Immediately, I knew that was the worst thing because I had already done some research and picked out an ugly oligodendroglioma because those have a much better survival rate. So, of course, that's the brain tumor I picked out, and it was not the brain tumor I got. I got the glioblastoma.
To wrap this up, I would say that one of the most important things I learned was trust your gut. If you feel something is truly wrong, you really have to be your own advocate. You have to be the one in charge of your health.
You go to doctors for their expertise and their treatment. Ultimately, it's you making your own decisions. I am so grateful and thankful that when I questioned my doctors and said I needed to know what was going on that they believed me and they scheduled the tests and we found out. And I'm here today.
Thank you for listening. This has been Glioblast-O-Cast Episode 1.
Theme music for Episode 001: "Vivacity" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License, http://creativecommons.org/licenses/by/3.0/