Loss of Speech
Complicated, Painful and Scary.
Malignant Low Grade Glioma
Chemotherapy and Radiation
So, this has been the way it has gone. In those few words, you can read the ends and outs of how a cancer is diagnosed.
This has been his life. His life that is now changed forever by the word cancer.
He is my husband and he has a malignant brain tumor.
The path to this diagnosis has been a strange and scary one. A path that I have resisted going down to such an extent that I, even as a Paramedic, whether consciously or subconsciously, chose to ignore the symptoms in hopes that they would go away. In hopes that they would just as suddenly vanish as they did start.
He started having “episodes”. That was what we called them. All of the sudden he would be talking and then out of nowhere, he would stop. Words had left him. His own language became foreign. It would take less than five minutes for him to regain his ability to speak and it came in phases. First, recognition. Second, sound. Third, unintelligible words. Forth, slow words. Finally, full sentences. All followed by a period of astonishment and fear of the event.
When they started to become more frequent, we began to keep a journal to try and pin point a trigger. Every time he had an episode we’d write down everything that was happening that day or night. From what he’d done (to rule out an anxiety or psychological insult), to what he’d eaten (to rule out a blood sugar/insulin imbalance), to what he’d drunk (to rule out an alcohol correlation), to his blood pressure (to rule out a potential cardiac condition) and even to his temperature.
Nothing made sense. There was no trigger. After many months of writing down everything, we realized what we didn’t want to know. There was nothing triggering this outwardly. It was coming from within.
After watching these episodes so many times, my educated guess was that he was having seizures. Absent seizures. Finally, he made an appointment with a neurologist. It took two months to get an appointment. Then an EEG was ordered. Then we waited another month for it to be performed. A week for results. Another week for a follow up appointment. Next, an MRI was scheduled. This is when I began to get scared. This was the step I was dreading. Three weeks later the MRI appointment came.
I didn’t go, but he was sending me messages throughout. He told me when he was going in. “Good Luck, honey” He then told me that he had to have another one. “Well, maybe they just didn’t get to see everything the first time” He then told me they were going to start an IV to do IV contrast “Don’t worry, my love. They’re just being thorough” Then he sent that they were waiting on the doctor to see the scan “Well honey. I think your doctor is just so involved that he wants to know how all his patients are” Then he told me that he was told to wait in a little room. “Honey, at least you’ll know what they saw and the doctor will be right down”
Then he showed up at home.
They had told him to go home and his doctor would call him that afternoon or he would see him in the morning. I’ve had two children naturally and these twenty four hours were the longest of my life at that time. The next day, at 1:00, we kissed the kids goodbye and headed out the door to get the news that I already knew. When the doctor finally came in the room, he began to explain how normal the EEG had been and that the brain waves weren’t the cause of his seizures. (I was screaming in my head for him to just talk about the MRI, but he insisted on saying so much about what was normal) Then he said the word. BUT. But your MRI shows a lesion. “How big?” It was about the size of a thumbtack. “Ok. We can handle this” The doctor then said he was going to start C on an anti-seizure medication and have him follow up with a neurosurgeon at Duke named Friedman. “The Alan Friedman?””Yes. But we might not get an appointment very soon, as he only sees patients on Tuesdays, so don’t worry if they don’t call you soon, but we’re going to send him a message and a copy of your scan to hopefully expedite your appointment”
Two hours later the top neurosurgeon in the world’s office called our home. “Can you be there in one week? The next Tuesday?” “Absolutely. Thank you.”
Really? That fast? Oh. Shit.
A week that felt like a year later, we are sitting in a beautiful office at Duke University Medical Center, when a slight looking, older man bounces in the room and introduces himself. It’s him! This is the man that going to finally tell C what’s really going on and can tell him what to do to make it better. “You have a brain tumor. We can leave it there and monitor it or we can take it out. When do you want to schedule surgery?’ Just like that. “Umm, as soon as possible” “Good! I’ll have someone schedule it and we’ll be right back” Then another man come in. “Surgery will be Feburary 29th. You’ll be admitted the night before and the surgery will be the next morning. Here’s a packet of information. Someone will call you with an exact time. It was nice to meet you. See you soon”
Fast forward just two weeks. C was admitted to Duke on Sunday night. I stayed with him for a bit and then left to go back home to the kids. Our Doodle’s were starting to get anxious and I thought me being home would help and it did.
Monday morning at 3AM, the kids and I were up and at ‘um and at Duke by 5:30. We got to briefly see him before they took him back. The best neurosurgeon in the world was doing C’s surgery in just a few minutes and I finally felt some peace. Hours went by. People came to give support and I don’t exactly remember all of them, but just them being there was so special. It helped. A lot.
Finally, the page to go back and see him came. His mother and I ran to the desk!! The receptionist said that he was asking for his wife. Only his wife. I felt so bad for his mother who I’ve grown to love as a mother and more like a friend. I said I was sorry. We were both crying and then they opened the doors and took me back.
As soon as those doors shut I could hear him screaming. Screaming for me! I ran. When I reached his bedside he was crying. I stopped crying and began to talk to him. I have no idea what I said, but he calmed down. So much so that the anesthesiologist began to cry. She said that the only thing he remembered after surgery was my name and then in recovery all he wanted was me. She had never seen a patient go from that agitated to that calm by just seeing someones face. I didn’t cry. I smiled. I held his hand and looked in his eyes. “All is well, my love. WE will be ok”
The night that followed was in ICU, but without complications. His pain was manageable and he could sleep a bit. I however, didn’t. I had spoken with the doctor. I knew his tumor was malignant. I knew they couldn’t get it all. I knew it, but chose not to tell him, so he’d sleep and be able to rest without the thought of the word “malignant”.
The next day we came home. Yes. The next day. His amount of fight is remarkable. His reaction to when I told him the truth was even more remarkable.
“All is well, my love. WE will be ok”