February 16, 2017 will be a date I will remember for the rest of my life.
Embarrassment, fear, and confusion are the three words that spring to my mind when I think about that night.
I went to bed at around 2am with a fever of 100.9 (my normal temp is around 96.8) and, according to James, I screamed like a banshee then had a grand mal seizure. This was the first seizure I have ever had in my entire life, but it wasn’t the last one. The paramedics were called and my fiance (James) and his brothers mother-in-law tried to put pajamas on me so i could go to the hospital.
Apparently, I kept pulling the blanket back over me saying “NO! I’m cold!” and couldn’t let them dress me without a fight. I smile and laugh thinking back on that now.
We recently had 4 feet of snow come through, so James’ brother cut a hole through the snow so a gurney could fit through it to transport me to the ambulance. Unfortunately, the ambulance couldn’t make it up our 1/4 mi driveway, so James and His brother had to put me in the truck and drive me to the ambulance. Weird, I know.
I don’t remember much from that night at all. It all feels like a creepy dream, the lights were on but no one was home. Apparently I was coherent enough to text, make calls, and take pictures while at the hospital but I do not remember a thing. So far, all of this information was told to me after the fact, and I am just sharing it now.
Emergency Room Visit #1
I got to the hospital and a CT Scan was performed, blood was drawn, and a urine sample was collected and tested. Nothing was found so I was sent home.
James was pissed. The first doctor said that it was most likely a “violent dream”.
We found out about 45 minutes after we got home that it really wasn’t a violent dream.
I went to the bathroom and james heard a loud thump.He ran to the room and found me face down on the floor twitching. It took him less than 10 seconds to get from the bedroom to the bathroom.
This time we didn’t wait for an ambulance, James just drove me down the street back to the emergency room because now I had a head injury.
Emergency Room Visit #2
Apparently, the nurse I had the first time was talking loudly and aggravating me. When I went back to the ER I thought I had a new nurse and was telling her that I thought the first nurse was a bitch… it was the same nurse as the first visit…. go me with my concussed self.
Apparently, I smacked my face on the floor with the force of getting into a 45 mile per hour accident (or so I was told later).
The new doctor ordered a flu test (per my request, we have carrier monkeys – AKA Children- living in our home that had strep and the flu recently), and an MRI with and without contrast because I cracked my head.
The doctor found a 9mm size mass in my right temporal lobe on the MRI. I know with the photos side by side it looks as though the mass is on the left and right side of my brain but it’s not. I am not quite sure how to explain how the mass is literally on the right side of my brain even though it doesn’t look like it in the photos. The left photo is viewed from looking down on the top of my skull (I think) and the right photo is viewed as though I am looking at you, so the right sof my face is on the left and the left side of my face is on the right (think about looking at a mirror if that helps). I THINK this is how to explain, but trust me that the tumor is close to the surface of my brain (per the neurologist) and on the right side of my brain. These are just TWO photos out of the many photograph slices they took using the MRI machine with and without contrast.
I didn’t see these photos until February 27, 2017 (11 days later) when I went to an appointment with a neurosurgeon with my mother, brother, sister-in-law and fiance all in tow.
When I saw these photos this became real. I was angry at the doctor for sounding so nonchalant about it all, when he was actually just trying to answer all of our questions and keep us all calm. My family had to tell me everything he said a few times before I could believe that he wasn’t being to calm about it all.
According to James I was yelling and apologizing to the doctor for yelling at him at the same time.
I couldn’t understand why I was the only one who was angry about this. I wanted to throw things and punch things. while writing this I still want to throw something.
I quit smoking about a month ago (if you read any of that journey) and seriously wanted to start smoking again after this appointment.
I never really processed what was happening to me during the 11 days I lay in bed on bedrest, probably because my concussion was causing me to have memory loss, constant headaches, nausea, extreme light sensitivity, and dizziness.
My anti-seizure medication was causing me to be weak, tired all the time, and irritable. All of these symptoms I was having I thought were because of the tumor.
The doctor explained that the tumor most likely caused the seizures, but the rest of my symptoms were because of my concussion. As soon as he said that, and my family repeated it, a light went off and I realized I was blaming the tumor for the wrong thing. I had to make a decision that I didn’t think I was going to have to make that day: wait 30 days and have another MRI and hope the tumor goes away on its own, or have surgery on the 7th as previously planned.
I was screaming in my head and so confused. WHAT? WAIT? YOU WANT ME TO WAIT? WTF? Who waits to have surgery when they have a tumor in their head causing you to have seizures? Well I didn’t know what to do, so I listened and made an informed decision. Basically, their is a small (very small) chance that the mass is inflammation in my brain and it may go away on its own……but it may not.
I took that chance and ran with it. We are waiting and I will have another MRI in a few weeks and within one week he will call me to schedule the surgery if the tumor is still there and still needs to be removed. Fortunately, the surgery will take 2 hours and I could spend potentially 3-4 weeks in recovery and go to work quickly afterwards. The main question I had was “when can I work again?”, he told me to not quit living my life now and go to work.
I cried hard, and almost fell off the table when the doctor left because I finally let go of some of the anger I had been holding in and pretending wasn’t bubbling at the surface.
I am trying to stay really positive about all of this, but today has been a little harder for me which prompted me to write this.
I became so worked up that my head started hurting and I had to find a way to calm down fast. I was crying and yelling and making myself sick with worry because I wasn’t sure if I was going to be able to keep getting this prescription I HAVE TO TAKE or I MAY HAVE ANOTHER SEIZURE. I’m having a hard time getting a PCP without a insurance. UPDATE: I should start my new job soon and insurance is immediate woo hoo!
James kept telling me to worry about it tomorrow because it isn’t helping me any today. There has to be a way around all of this and I just have to have faith. Faith in whatever I believe in that this will all work out.
I think what was making me so mad and upset is because I was raised to be a strong and independent person. Right now I am having to rely solely on James to: drive me everywhere (because my body has not gotten used to the Keppra yet); help me in and out of the bathroom for the first week after coming back from the ER; making sure I take my pill 2x a day, and all around care for me because I have been a mess during the last 11 days. He has been amazing, and I don’t know what I would do without him. He is trying his best to keep me calm and keep the noise levels and lights down so I don’t potentially have another seizure. I keep getting told it is okay to yell, scream, cry and hate the world with everything going on right now. It is okay to feel a loss of control and be completely scared shitless at the moment.
POSITIVE SIDE: I have James to help me through this. I have my friends and family to help me through this. I have so many people praying for me and my family to get through this. I have my art, and I still have my health. I can still breathe and think and see. I am loved and I know I can do this. I will make it through this and it will be ok.
If this is the first time you are reading this and you didn’t know this was happening, don’t feel like I didn’t care. I didn’t want to burden many people with what was going on in my life. If you have been through this yourself and have any words of encouregement, they are always welcome. If you haven’t been through this before, and may be going through it now, please know that their are other people out there that are willing to share their story with you and help you cope with it as well. Also, please dear god do not bombard me with millions of questions. I will keep everyone updated as I continue this journey.
No one knows how to prepare for this situation, you just have to grab life by the horns and keep going.