“I started getting migraines when I was 26. My father and sister had always had them, so it didn’t mean much to me; just that it was ‘my time.’ I remember asking others for advice on managing those migraines. I tried everything. I thought migraines were just going to be a part of my life. Then my migraines started getting weird. I was a Ph.D. student at the time, and I was on campus, working. As usual, my migraines began with a small blurry spot in my left visual field, and then this blur got bigger and bigger until I couldn’t see anything. Then this time, the left side of my face went numb, along with my left arm. I walked to the campus health center (probably quite crookedly on account of my entire visual field being blurred). I checked in to the walk-in clinic and explained my symptoms. I saw the physician and was promptly sent home with the advice to get Tylenol.
My migraines continued, and later that year, they started getting worse. I would get acid reflux at night and felt numbness in my left hand often. I called the neurologist’s office again and asked if there were any cancellations—there weren’t. Then, I got the final symptom that started to worry me. I would get ‘dizzy spells’ (what we would later find out were focal seizures) throughout the day. I would feel dizzy as if I were about to faint, and then I would go to the ground and put my head to the floor. When they would come to an end, I would feel acid in my throat. I had no idea why this was happening.
For a short while, I thought I could even be pregnant. These would occur when I was going for walks, writing on my computer for too long, or in the middle of the night. I had been dismissed so many times before it probably took me a month of having seizures before I called the neurologist’s office again. Every time I had a seizure, I would stay in that position and just pray something wasn’t wrong. I honestly didn’t think of what could be happening. I called the neurologist’s office three more times and finally got in for a video visit after explaining my symptoms.
I talked to the doctor. He completed a Neuro evaluation, told me all the things doctors had told me before about migraines, and he ordered an MRI, which I then scheduled for the first available appointment later in the month. I was not worried on the day of the MRI. It was raining hard that day. I almost didn’t go, but then I thought it would be cool to have some images of my brain to show my students when I taught brain imaging in Intro Psych. It turns out, the desire for some cool PowerPoint slides was much more compelling than the dizzy spells. I got the MRI, probably went to Target, and then went back home that Sunday afternoon to get ready for the week.
I got a phone call at about 10:30 p.m. I didn’t answer because I thought it was weird, and then I realized it was the hospital’s area code and thought I should listen to the voicemail. That’s when we heard the unimaginable. I couldn’t believe my ears as the doctor said to get to an emergency room and page him. I fell to the floor. My husband got me back up, and we called the doctor. ‘There is a large mass in the right hemisphere of your brain.’ We called my parents, packed a small bag, and got ready to leave. On the way out, I went to the bathroom and started crying as I looked at the mirror. I have always had a habit of writing my goals on sticky notes and posting them to the mirror. I had taken a pregnancy test and a red Sharpie and filled it in to look positive. I posted that test to the mirror as a reminder and hoped one day it would be the result of a test I would take. I cried, not at the loss of another month not being pregnant, but the thought my body is so smart it knew it wasn’t the right time for me. My body had been telling me the entire year.
We got in the car and drove to the emergency room. I will never forget how calm my husband was. He was my rock on the night my world turned upside down. In the time of Coronavirus, no one was allowed in the emergency room with me. My husband dropped me off, and my parents (who were on their way) arranged to find a spot to meet him when they got there. I walked calmly into one of the scariest places in the world and checked in.
I looked down at my wrist in the waiting room. ‘Still I Rise’ is tattooed on my left wrist. I got the tattoo after I finished my first year of teaching. I thought nothing could be more challenging than my first year of teaching (haha!). I think about Maya Angelou’s ‘Still I Rise’ often. While I had become so removed from the hardships of being a first-year teacher, it still reminded me of my students because we studied her work together. There, in the ER waiting room, it gave me an enormous rush to be thinking of them.
I was called back into the ER, hooked up to all the cords and monitors, and a PA came to tell me the news. They pulled up my MRI and showed me the mass in my brain. I called my mom, dad, and husband to be on the phone, as she explained. It was big. My mom asked if I would send her a picture, and I remember saying, ‘Are you sure you want to see it? It’s big.’
Then I started laughing. The PA looked at me, confused, and I just told her, ‘I just know way too much about this.’ We laughed together, and soon I was admitted to neurosurgery. Then, I met my assigned neurosurgeon for the first time. He came in, pulled up my MRI, and explained what the tumor most likely was and the plan. The first step in these types of tumors is planning for surgery to remove as much as possible. Surgery would be soon but not that week. We scheduled to meet in the neurosurgery clinic later the next week, scheduled an MRI, and I was discharged from the hospital with anti-seizure meds and a fear I’d never felt before. Even though I was scared, I felt safe (something I would say over and over). It was the medical professionals who made me feel that way. And I will always be thankful for them.
The month leading up to surgery went fast and slow at the same time. When doctors referred to my tumor, they always said, ‘most likely a glioma,’ and that entire month, I didn’t dare Google what a glioma was. My fear was confirmed when someone sent me a blog-like article on a woman who had a brain tumor, and she said something along the lines of, ‘Doctors thought it was a glioma, but thank God, it was not . . . Never Google the term glioma.’ I read that post and cried for a few days, then focused back on the upcoming surgery. My suspicions were further questioned when we met with a team at the hospital, and one of the team members was a neuro-oncologist. I am not sure what I thought the large tumor in my brain was, but I didn’t even imagine the possibilities at that time.
In the ER, I remember talking to a nurse and saying, ‘OMG, I am going to have to be awake during surgery, aren’t I?’ and he said, ‘You have been watching too much Grey’s Anatomy, haven’t you?’ I followed up with, ‘Yeah… but tell me right now, am I going to have to be awake or not?’ An awake craniotomy was set.
I asked my doctor what it would feel like, and he assured me I wouldn’t feel any pain but I might remember some pieces, and I would be tested during the awake portion. I didn’t overthink it, and mostly the days leading up to surgery were filled with adrenaline, reading, and lots of watching The Office. The night before surgery, my neurosurgeon called and asked if I was ready. ‘I’m ready,’ I said, ‘Are you?’ He confirmed he was ready too. In hindsight, I don’t know how I had the guts to ask a neurosurgeon if they were ready, but I hope he knows I wasn’t questioning him. It was one of the most human things. Hearing from him and spending the night with my family, I slept well and woke up ready.
We went to the hospital, went to pre-op, met all the wonderful people who were going to be in that room, and then my mom finally left to go to surgery waiting, and I was wheeled back to the operating room. I remember them doing the safety check, everyone introducing themselves, and then the anesthesiologist asking if I was ready. I do remember waking up, but I remember very few details. I remember being cold and a nurse giving me a blanket. I remember a nurse putting a wet sponge in my mouth to keep me hydrated. I remember answering some questions and feeling a cold sensation in my head, but that was it. The next thing I remember is waking up in the post-op area. I remember seeing my nurses and my mom. I remember seeing my surgeon. I don’t think I said anything, but I remember wanting and trying to say, ‘Thank you, thank you, thank you.’
I spent 4 days in the ICU and 2 days on the Neuro floor. Those days were filled with the kindest people in the world and one visitor per day per COVID guidelines. I remember wiggling my toes and fingers and thinking of how wild it was I could do that. I recorded more videos on my phone, which would later prove to be hilarious. I went live on Instagram while I had my breakfast in the ICU the day after surgery (My apologies to whoever attended that live because who knows what I said). Those days were mostly sleeping and neuro checks. I also got a post-surgery MRI. The results were incredible and far beyond what we were expecting. It was so cool to see the before and after, and I continued to be so grateful for my medical team and so proud of what my brain had gone through. I walked for the first time in the hospital, was able to start eating, called many friends and family, enjoyed my daily visitors, and was discharged to go home exactly a week post-surgery.
At first, going home felt weird. I learned to trust my body again, and it was hard not to be at the hospital where I was 100 percent safe. My mom helped me shower, my dad made me breakfast, my husband helped me start to walk again, and my dog cuddled with me while I fell in and out of sleep all day. The post-surgery pain was a lot to manage. I learned tips and tricks from others. I got lots of headache wraps, large sunglasses that fit my swollen head to block out light that bothered me, and propped up an enormous number of pillows to be able to get as much sleep as I could. When I would wake up in the night and could not sleep, I made a little song and would say over and over, ‘I am healthy, I am well, I feel good, I feel swell’ (pretty sure it was the first time I’d ever said ‘swell’ in my life).
Then after a few weeks, the appointments started to ramp up again. I had an appointment to go over pathology reports and get my staples removed. When pathology came back after surgery, chemotherapy and radiation therapy treatments were planned; I was diagnosed with anaplastic astrocytoma (grade 3, IDH mutant). Sharing those pathology reports with the world and the upcoming treatment plan would lead me to the most challenging time since diagnosis. After thinking about why it was so difficult to comprehend, I started to understand. I was immediately met with the message of being able to fight. I rejected that narrative. I didn’t want to fight my tumor. I didn’t want to fight my brain. I loved my brain for all it was, is, and will be. I kissed my brain every single day and loved my body, even while fighting the unimaginable. I started to ignore those messages. I planned for fertility preservation and had another set of wonderful doctors and health care professionals who helped me preserve my eggs. I met with the new members of my team and learned about the plan for chemo and radiation. I got more MRIs, was fitted for my radiation mask, and had an education session at the cancer center about the chemo I was going to take.
The first phase of my treatment was radiation appointments (Monday-Friday) and chemo every day. Then, 12 more chemo rounds, with lots of blood testing and, you guessed it, MRIs. I hope people can read my story and know they don’t have to fight their body—they can love their body through the good and the difficult. And I hope the reader can kiss their brain right now and thank it for all that it does for them.”
This story was submitted to Love What Matters by Christina Costa of Ann Arbor, MI. You can follow her journey on Instagram and learn more about her book here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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