On Friday March 21st I went to the emergency room after 5 days of experiencing migraine headaches, vision problems, and nausea. I expected something a little stronger than Advil, a pat on the back, and then I would continue on my merry way. As I sat in the dark of my ER bed, praying for the lights to stop hurting and the noise to go away, they sent me for a CT scan. Afterward the doctor came in to tell me, very soberly, that an MRI had been ordered because they found what they thought to be a tumor or possible fluid on my brain. They gave no specifics, no assurances of which it was or how severe, and all I could think about was that frightening word repeating over and over again.
tumor. tumor. tumor.
I called Stephen from my phone and asked him to come back into the ER. I repeated what they had just told me and I sat motionless, unable to do anything until I was given more answers. Stephen tried, unsuccessfully, to get out of work and then eventually it was just me waiting again.
While I was being wheeled up to the MRI I kept thinking about how this could not be happening to me. That maybe they were wrong, and it was really nothing, and maybe another other picture from another machine would prove that. I said the rosary throughout the length of the noisy, claustrophobic MRI, and again I waited.
A neurosurgeon came to evaluate my vitals, doctors and nurses poked and prodded, and my parents arrived. When the results came back a new doctor delivered the verdict. They had found what is called a colloid cyst and a condition known as hydrocephalus. They explained it as a benign tumor that was blocking spinal fluid, causing my ventricles to swell, and thus resulting in the symptoms I was experiencing. I sat with my parents as they recommended I be taken to another facility for an emergency removal surgery.
What. the. actual. hell. Was all that I could think.
Brain surgery. Brain surgery?? Didn’t they know I was a normal, healthy 26 year-old? Didn’t they know I was getting married in 2 months? I sat silently for a while and then I began to cry. I was nervous, and scared and in disbelief. My unbearably bad headache was turning into what felt like a slow-motion nightmare.
I was admitted to the hospital while I waited for the ambulance to transport me to the University of Pennsylvania, and everyone on staff at Shore Memorial was so sweet and comforting. My parents sat with me as I texted Stephen, canceled work obligations, and waited and waited. That night I arrived at Penn and was moved several times before I settled into my room on a neuro floor. My family and Stephen were by my side, and I tried to sleep amidst the frequent interruptions. The next day I was told that my surgery was scheduled for Monday afternoon. My room became a revolving door of doctors and nurses making sure I was doing well, hooking me up to endless machines, and reading me the list of potential risk factors.
When they mentioned short-term memory loss we made jokes about 50 First Dates, and The Vow. Not that it was really funny, but just to make the situation light. I didn’t really have any good seizure or death jokes, so I let those be and pretended not to hear them mentioned. I stressed the importance of not shaving my entire head unless I was literally dying, since I was about to be married, and we all know the Britney look would not be my finest.
Friends and family came to visit and bring lots of unhealthy foods that made amazing potential last meals on earth: butter cake, cheese steaks, vegan cookies the size of my face. I received flowers, and prayers, and well wishes that gave me strength. A few people asked me how I stayed so calm, but I don’t really have an answer for that. I didn’t always feel calm or brave, and I had my moments when I wasn’t rational, but for the first time in my life I understood the idea that worry doesn’t do you any good. I trusted God, I had love and support from all over, and I had a ridiculously talented team of doctors and nurses caring for me. Every little bit of that helped, and even then I still experienced surreal moments- like writing a living will and laughing as my sisters bickered over who would get my computer and who would get my shoes- to which I responded, “Hi. How bout let’s think about me NOT dying.” I sometimes wondered if I was having my last conversations, or if using a Disney Princess coloring book would be the last silly activity I participated in. I knew the risks were low, but I had also seen enough Grey’s Anatomy to know that anything could happen, thank you very much. I worried about leaving Stephen behind. I worried most of all that I wouldn’t wake up the same person I had always been.
On Monday March 24th they woke me up early to say that my surgery had been moved up to 10:30 am.
“Oh shit.” was my response, naturally. What else are you supposed to say in that situation? “Yeayuuhh. Can’t wait to get that brain surgeraay!!”
My family, Stephen and I said a decade of the rosary together before heading down to the operating area. I was comforted to find that the nurse sitting with me before surgery was a relative of one of my youth group members. Later I was told that the actual procedure didn’t take more than 30 minutes, and I was thankful to hear that everything had been removed. After two very difficult days recovering in the hospital, I was sent home that Wednesday.
I am so very blessed and thankful. Despite the first days after surgery, I have experienced very little pain and my headaches have disappeared. I am fully functioning just as before, and feeling better every day, thought I do have occasional challenges.
My recovery time is six weeks, and it has been somewhat difficult for me. No driving, no lifting more than 5 pounds, no bending forward, no intense exercise or activity. The incision site is healed and my hair is beginning to grow back, but I still feel a little self-conscious knowing it’s there.
My whole life I have thought about what it would feel like to have a wedding and get married. Although there is never an optimal time to have brain surgery, this was not part of what I envisioned. It is difficult to feel pressed for time and have anxieties about the financial aspects of a wedding. It is difficult to have a vision of yourself as a bride, and then not feel anything like you thought. It is difficult to be told you can’t keep up your routine when you were just starting to really enjoy exercising. And as much as I am confident in who I am as a person, it is hard not to focus on self-image when approaching such a monumental event.
Despite all of that, I know that I will overcome my thoughts of inadequacy. More than anything this experience will make marrying Stephen even more joyful. Throughout the entire process he never left my side, and I am so grateful for that. He held my hand and skipped meals, and slept in plastic chairs. He remained strong when I couldn’t be and he showed me what it means to be selfless and to sacrifice. He was my rock during the scariest time of my life. I am so blessed to be recovering, and to be well, and to be part of a real-life love story.
Today and tomorrow and every day after will be different because I am not just living, I am truly alive.