I Have A Brain Tumor

Okay, so I had other posts lined up for this week but obviously the more pressing news my brain tumor :)

I’ll just preface this with the fact that I am completely fine and that the tumor was found because of a concussion I had. I’m not dying!

Backstory

I hit my head on a bunkbed in my friend’s home in Park City, Utah. I was not used to having a bunk bed and was waking up early to go to work Eastern hours while we were in Mountain time. I didn’t fall on the ground but I did lose consciousness for a split second or so.

I didn’t think anything of it but I had a bump and a headache to go along with it. We were at ~7k feet above sea level of altitude so that had been giving me some headaches earlier in the trip. Went to work and everything was fine. I work with lots of computer screens every day for many hours in a row and I always have headaches.

Headaches persisted and then I developed an earache on the same side where I had hit my head. The next day I flew to Kentucky, as planned, to get my cat and spend time with my mom. Flight did not help my headache, obviously, but that’s besides the point.

I got home around 3 am or so and slept til about 11 am. Didn’t do much during the day and ended up taking another nap. When I woke up, my head felt the worst it had felt and so did my earache. My dad recommended that I have a virtual appointment with a doctor and when I did, he told me to go to the ER.

Emergency Room

I arrived at the emergency room at around 9 PM and had to wait in the waiting room for about 2-2.5 hours to get a room. I wanted to get a CT scan to see if I had any internal bleeding and the CT confirmed that I didn’t. However, this is when they noticed the mass in my brain and they decided to order an MRI with contrast. The doctor on call mentioned that he thought the mass was benign.

The MRI people were not at the hospital so they had to call them in. This took another hour and a half or so. Let me tell you that for MRI machines are loud as fuck and did not help with my headache at all. Like really, it’s very loud. Next, waited another hour and a half or two to get the results.

The doctor came back and said that he wanted me to talk to the neurosurgeons and that to do that I had to be transferred to a different hospital. At this point I was very scared because the doctor could not answer a single one of my questions and kept deferring to the neurosurgeons. So I figured it would be another hour or so to get transferred and boy was I way off. Nearly 8 hours later, I finally saw the ambulance staff finally come in to get me and we were off to the other hospital to hopefully get some answers.

Ambulance Ride

So there were 2 people that loaded me onto the stretcher. The first one, Kimmy, was the driver and the second one, John, rode in the back of the ambulance with me. I was trying to go to sleep because I get extremely nauseous in the back of cars but John had a different idea. With the blood pressure machine thing squeezing my arm every 10 mins there was no way I was gonna get some shuteye. Additionally, John asked me all kinds of questions that I thought were for the chart, like my age and my job and if I had kids… Then he asked me if I wanted kids and what I did for work and if I was married. If you know me, you know I hate small talk and I love naps and Johnny here was making me talk and not letting me nap. As if my one worded responses weren’t dropping enough hints, he then stopped asking questions and telling me about himself. About how I should stay single forever and how he didn’t need his wife. So stay single kids!

Meeting with the Neurosurgeons

This hospital was so nice and the staff was great too. There was always a doctor or a nurse nearby checking in on me and making sure everything was as comfortable as possible. This hospital room was very fancy and very large, which made me think that I would be spending multiple days here and made me very nervous for the results. I was also really frustrated because I thought all that was left was for the neurosurgeons to interpret the results of the scans.

The neurosurgeon came in shortly after we arrived and did what I would call a neurological eval. He explained everything in detail and mentioned that the tumor was in the brainstem. The brainstem connects the brain to the spine and the part of the brainstem where my tumor was located was called the midbrain. The midbrain is responsible for motor functions such as seeing, hearing, regulating temperature and heart rate. The location of the tumor is what makes it so tricky, from my understanding.

The doctor said that because of where the tumor is located, they want to be very careful with intervening by performing a biopsy it or removing it altogether. His suggestion, after reviewing it with his attending and the neurosurgeon oncologist, was to observe the tumor by waiting 3 months and doing the CT and MRI + contrast again in 3 months.

Next Steps

While I know that Norton has a brain tumor center, I don’t live here in Louisville. Additionally, I want as many specialists as possible to review my scans and let me know that the doctors here in Louisville are recommending the right treatment. If they agree, then I will gladly comply, but if they don’t then I will continue to research the best path forward.

I have a lot of friends that are very well connected and they have my reports and have reached out to their friends. I am confident that we will get some answers and be able to move forward with whichever path we think is best.

Thank You

I have received a ridiculous amount of messages from people all over the world checking in to make sure that I’m okay. I am okay. This tumor is not causing any symptoms at this time and it was found by accident. This gives us time and we are using it as best we can. I want to say thank you so much to all of you that took time to reach out and send me sweet messages. If I have not gotten back to you, I will. Please just understand that everyone is asking me the same questions and it’s been tiring to revisit the subject over and over.

I just want to also say that I am fine!! We found this tumor by accident because of my concussion from hitting my head on bunk beds. We are going to monitor it and make sure it grows but it’s not causing me any other symptoms or pain in the meantime.

When I heard the doctor say the word tumor I was in shock because I was waiting for him to say I had a brain bleed. Like that was my worst case scenario, a brain bleed. Never in a million years did I think I would hear him say that I had a tumor. I think a lot of us have been conditioned to believe that tumor is synonymous with cancer and I did not want to let my mind wonder there. I know that it could be but I don’t want to waste time worrying about something that hasn’t been confirmed. I ask that if you are around me that you bring nothing but positivity to my life. I tend to get really stressed and upset so please keep your drama away from me. I am so grateful to have such a wonderful support system and have friends that are really more like family, and family that really stands by me and support me. Through this crazy, scary and uncertain time, your words of encouragement mean the world to me. I’ll continue to keep you updated.