Three weeks from today is my brain surgery. Ironically, being a Thursday, I discovered there’s a tag on Twitter for #BrainTumorThursday. How fitting for my tumor to be removed on a Thursday! But I’ve been trying to think of what I can share about this situation that I haven’t already said. After all, the main purpose of my blog is to raise awareness. So I thought, maybe I’ll share what it feels like to have a brain tumor, emotionally as well as physically. I’ll give it a whirl.
It all started with a migraine on January 2nd of this year. I have a history of occasional migraines, so I didn’t think too much of it. Even when I had another migraine a few days later that actually sent me to the emergency room for rehydration and antiemetics, I didn’t think it was a big deal. When I’ve had migraines in the past, I’m typically very sensitive for a few days following the initial migraine, easily developing another without much stimulation.
What do my migraines feel like? Usually, extreme pressure and pain on one side of my forehead that spreads over the top of my head towards the center of my head and around the back. It throbs. It burns. It feels like my brain is about to burst out of my skull. My ears hurt. My face goes numb, yet burns at the same time. Then there’s the sensitivity to light, where even a sliver of light over the top of the bedroom curtains is too much. And the sensitivity to sound, where even the sound of my cats softly padding down the hall reverberates through my head like a jackhammer, each step a throb. It’s amazing how sensitive I become. I’ll never forget the time I was at home with a migraine and the city tested the warning sirens for the nuclear power plant. I thought I was going to die. And puke, since I occasionally become so nauseous I can’t move.
Now imagine this happening on an almost daily basis. While you’re at work. When you wake up in the morning. While you’re driving. It gets old really fast. And I missed a lot of work as a result. Six weeks after the migraines had started, I was diagnosed with status migrainosus, but despite a negative CT scan, I still had this feeling something was wrong. It wasn’t until March that I had an MRI that discovered a 6 mm tumor on my pituitary gland called a prolactinoma. I named it Mini just because I could. Luckily, prolactinomas can be treated with oral medications. So I started on those in the middle of March.
It didn’t take too long (2 hours after the first dose, actually) to start having side effects. Nausea, dizziness, hot flashes, and headaches that weren’t migraines, but were still quite severe. It didn’t take me long to voice my frustrations in my journal.
March 19, 2016: “I’m frustrated now. Frustrated that this could turn out so much differently than I thought last week. Of course, it still could. But it might not, and the thought of having these symptoms for the rest of my life is entirely disheartening.”
As my physical health continued to slide downhill, so did my emotional health. I’ve discovered that pituitary adenomas are sort of the bastard stepchild of brain tumors. No one takes them seriously because they’re benign. But benign brain tumors can have just as much of an effect on your life as malignant ones. When I returned to work at the end of March, my first time back to work after my diagnosis, and joked with my co-workers that sometimes headaches are caused by brain tumors, one of them quipped, “Yeah, well, most of the time they’re not.” Which is obvious, but what, were you upset or something that you didn’t figure it out first? That no one took me seriously before the diagnosis, including yourself? It was the first in a long line of things that damaged me psychologically to get me to where I am today.
I even received pushback from other healthcare professionals. When I wasn’t tolerating the medications and wanted to see a neurosurgeon, I was refused an appointment because, as the lady on the phone sneered at me, “It’s only a prolactinoma.” Apparently some people with brain tumors are unworthy of being seen by neurosurgeons. That was a huge defeat to my psyche. It made my already clinically depressed mind worse.
April 27, 2016: “I’m just so disappointed. And upset. I really thought this was going to be the answer. I really did. Guess that just goes to show you what a stupid, idiotic moron I am. Why would anyone want to help me anyway? It’s ‘just a prolactinoma.’ Yeah, and it’s ruining my life.”
Before long, I was unable to function, especially after my endocrinologist increased my dose in the middle of May because my prolactin level wasn’t normal yet. One night in June at work, in the middle of the night, I was hit with such a wave of symptoms that I had to call in a coworker to work the rest of the shift for me. The nurses on the unit where our pharmacy satellite is located almost called a MERT on me (Medical Emergency Reponse Team), but I refused and just had them check my vitals and blood sugar, which were all normal. I left work at 3 am, dry heaving into a plastic bag, and I haven’t worked since. I tried tapering off the medication at the discretion of my endocrinologist, since I was starting to actually pass out from it. I thought once I did that, my symptoms would go away since they were side effects of the medication.
Oh no. My symptoms got worse. I had bouts of dizziness so severe I couldn’t get out of bed. And I continue to have those symptoms, which to me indicates the tumor is enlarging off the medication. Luckily, since I failed the medication officially, I was allowed to see the neurosurgeon in July, who recommended surgery as the next course of action. Sign me up!
And now I only have three more weeks to wait. Then maybe, just maybe, I can get my life back. I’ll be able to work regularly again, so I won’t feel as useless and worthless and alone as I do now. That’s a day I look forward to immensely.