I Did Not Survive To Give Up
“Have you seen this face before?” My brow furrowed, uncertain.
“How about this one?” I bit my lower lip, unsure of what to say.
No, I wasn’t in a police station identifying a suspect. I was in a cognitive therapy session, trying to repair the damage caused by my brain tumor.
My husband and I had been trying to get pregnant with zero luck for quite some time, and finally turned to Science! for help. My doctor badgered me into having an MRI “just to rule a few things out” – I was still rolling my eyes as the imaging techs were rolling me into the tube. Who has a freaking brain tumor at 30?
(Spoiler alert: Me.)
I was at work the next morning, training a bumper crop of new hires, when my doctor’s office called and said he needed to see me. Seeing as how I had previously scheduled a follow-up for three weeks, I figured this wasn’t good news.
My doctor broke the news to me in calm, measured tones. I was alone because my husband was flying home that day from a business trip, and I couldn’t make it through the weekend without knowing. I remember focusing on his black jeans (it was casual Friday) and the intense feeling as if I were having an out-of-body experience.
While driving home in the middle of the day, my husband called. He had just landed and was happy, ebullient. “I can’t wait to see you, sweetheart! How did your appointment go?”
“Oh, it was fine,” I said, my voice high and thin. “We’ll talk when I get home. Can’t wait to see you!” Some things you don’t say over the phone.
Like my girl Janet (Miss Jackson if you’re nasty), I’m a bit of a control freak. I have a five-year plan, a five-month plan, and a five-minute plan. As a result, I felt really confident going into surgery because we had The Plan. My tumor is quite large and tentacle-y, so my neurosurgeon could only remove about 10% of it. Through my nose. (Yes, you read that correctly.) No muss, no fuss, no crazy scars. Then, my oncologist would take over, and I would receive 28 sessions of proton radiation to hopefully kill the remaining inoperable portion. It was completely wrapped around one of my carotid arteries and bending my optic nerve in half, so the chances of having a stroke or going blind were pretty damn high if we did nothing.
The Plan went to shit.
The morning after my surgery, it became immediately apparent that something was wrong with me. I was fainting, my blood pressure kept dropping, and my pituitary gland wasn’t producing any hormones necessary for, well, sustaining life. My doctors kept extremely close watch over me, thinking it may have been the shock from the surgery, but it got worse as the days passed. I went into surgical menopause. My hot flashes were so intense that the nurses and my mother put bags of ice around me in my hospital bed. After ten nights and a re-hospitalization, I was finally allowed to go home.
The steroids I was on caused me to eat like a madwoman; I drank literal gallons of fluid a day. I gained fifty pounds in just a few months. My skin stretched and tore.
The menopause thing? It was awful. My lady parts were so dry that the touch of mere underwear was excruciating. Suddenly, all those commercials I saw on daytime TV about vaginal dryness really connected with me. Sex was torturous.
My head felt like it was going to explode. The pressure was awful. I had a constant headache, interrupted only by migraines. I couldn’t sleep.
My mind felt thick – I forgot words I had known all my life. My short-term memory was in the form of a notebook I carried around with me. I could look at the TV, or listen to it – not both. I wore sunglasses inside because the light bothered me so much.
It was somewhere around this time when it hit me: my two dearest friends were pregnant and literally bursting with life, while my body was actively plotting against me. The finality of knowing I’d never have a child “naturally” after having struggled with infertility for so long hit me harder than any migraine ever had.
After my surgery, my life changed dramatically. So many of my plans changed. Some had to be shelved.
I had to stop working. I got an e-mail from LinkedIn advertising my own job to me - that one hurt. I made a career out of telling people what to do and how to do it better. Now I’m in cognitive therapy every week, trying to rewire my fuses. I’ve made enormous progress, but there’s still a long road ahead.
My doctors and I are still trying to figure out how to manage my migraines and headaches. It’s a daily problem for me, and one that I don’t often talk about, because it just is what it is.
What hurts the most for me, I think, is the concept of invisible illness. I look “fine”, and I’ve encountered some people who’ve accused me of being dramatic, or even outright faking my health issues. What I am faking is feeling well enough in order to get through social situations, or life in general. It’s been extremely hard to have my dignity questioned by people who don’t care to understand my day-to-day life.
I have wonderful family and friends. I have been blessed with a saint of a husband, a man who has cared for me when I am sick and played with me when I am well. I know we will create our own version of family one day.
I could allow myself to give in to the sadness, allow myself to be swept away by it, allow myself to eventually drown in it. Some days, it would be easier than fighting.
But… that is not who I am. I did not survive to give up. I still make plans. Now, I just write in pencil.