Some quick facts about me, my tumor (A-A-Ron), and life post-surgery
- On March 15, 2017, I had some trouble finding my words. It was the second time that it happened and so I became concerned. I was familiar with the relationship between aphasia (difficulty with speech) and stroke because years ago one of my fellow graduate students had a stroke at 32 years old and my aunt had a mini-stroke (TIA – transient ischemic attack) earlier in 2016.
- I contacted my mom and told her what happened. She told me to get myself to the ER immediately. I called an Uber and was at the local ER within the hour. I was not thinking I would be there long. I debating taking a magazine to read and a sweatshirt because it would be cold in the waiting room. I texted my boss and said I’d be unavailable for the remainder of the afternoon as something had come up.
- I walked up to the check in counter in the ER and told the nurse that I needed to check myself in because I had experienced some aphasia. It was hen I learned that aphasia is not a common term. She asked me to explain. I said I had trouble finding my words. The nurse on the other side of the wall overheard, put me in a wheelchair immediately and I was in a CT scanner within 10 minutes. That is when I was told I had a “large mass” in my brain.
- Turns out that I am lucky to live near one of the leading neurology hospitals and was transferred there within 2 hours. It was my first ambulance ride. My User Experience (UX) brain was observing everything and asking the women all kinds of questions about how they work in the ambulance and what kinds of workarounds they had. They had a phone charger in the ambulance!
- AS they wheeled me into the ICU in the sister hospital, I overheard one of the staff members say, “Is this the massive tumor from Alexandria”? I thought to myself, “I guess that’s me” and Well that is probably not the user experience that they want patients to have.” That is how I went from a large mass to a massive tumor.
- The following morning, 12 hours later, I finally had an MRI and learned that I had a tumor so large it had probably been there for 2 decades. My brain had just accommodated around it all these years. It was not the largest tumor they had ever seen, but I was certainly on leaderboard.
- Three days later, on Saturday, March 18, I had brain surgery to remove A-A-Ron. The surgery was supposed to last 7-12 hours. I was done in 4.5 hours due to A-A-ron being much more “suckable” than expected. However, brain surgery is an art and they were not able to get him out completely. They got about 80% of him out, leaving a hole in my brain approximately the size of a grapefruit. I came out of the surgery with a wonky left eye and no left peripheral vision whatsoever.
- Three days later, on Tuesday, March 21, I was sent home. You heard that right. Three days after brain surgery, I was sent home. I was in the hospital from Wednesday to Tuesday. I’ve been home ever since, recovering from brain surgery and experiencing the most incredible things that I will now share with you on here.