Brain Tumor? No, Lady Gaga

Andi
4 min readMay 24, 2018

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I looked up from the drum kit and immediately thought I had a brain tumor.

I was seeing double. I put a hand over one eye, then the other. Only the vision in my left eye was doubled, my right eye vision was the usual lousy.

My eyesight has always been weird: I had strabismus as a baby — my right eye wandered outward. It was surgically corrected so that my eyes look normal, but I’ve had amblyopia ever since: I don’t really see in 3D, I don’t have stereo vision. My brain generally only sees out of one eye at a time. My left eye is normally the “good eye.” Now with doubled vision on the left and poor vision on the right, I had no good eyes.

This double vision had never happened before, there was no pain, and it happened all of a sudden for no apparent reason. When you’re an LFS mutant, your chances of developing cancer are high, brain cancer is an LFS “core cancer,” AND breast cancer metastasis to the brain is not uncommon, thinking “brain tumor” is not hypochondriacal. I called the Kaiser nurse hotline and waited an agonizing two hours for a call back.

Freaked out in the meantime, I called Jen. Jen, my mutant sister who has stage 4 breast cancer, metastasis to the brain (as in, actual brain tumor, so of course she would know if this was a legit brain tumor symptom) and 4 mini mutants who were battling creeping crud at the time. As if Jen didn’t have anything better to do than talk me down from panic. I felt like a shit heel for further burdening her with my fear. She did indeed talk me down, said it was likely nothing serious but she could understand my concern, and asked me to keep her posted. She is the best kind of friend, and I’m thankful she puts up with me. And that she didn’t call me a shit heel.

The nurse called back and, after discussing symptoms, told me to go to the emergency room. Jay drove (I am so glad he was home!) and I watched intently as text on road signs and print on trucks and vans showed a kind of visual Doppler effect, starting distinctly doubled at a distance, with the double moving closer to the original as we passed.

Emergency room staff took all my vitals, shined lights in my eyes, asked questions and did a bunch of “follow my finger” tests. I mentioned that my brain MRI at the end of February (part of my usual, annual LFS screening) had been normal. I expected they would want to do another. They put us in “the eye room” — basically a room with opthalmologic equipment — and went to ask the ophthalmologist what to do.

All that opthalmologic diagnostic equipment went unused and I never saw the eye doctor. They had determined I wasn’t having a stroke, so they told me to go home and call Monday to make an appointment with the ophthalmologist to get my eyes checked. Then they charged me $150 for the emergency room visit.

The double vision gradually went away about six hours after it started, and it hasn’t returned. I never liked Foreigner anyway.

I did as I was told, and the following Thursday I was once again in a room with a bunch of opthalmologic equipment, this time not part of the emergency room. My eyes were numbed, examined, pressure-tested, dilated, examined again and deemed fine. The best the opthalmologist could come up with was that I’d had an ocular migraine, even though I’d never had a migraine before, there was no pain (migraines don’t always involve pain, I was told) and as far as I know nobody in my family has ever had migraines. The eye doc told me to call her if it happens again.

I was sent back to complete my work day wearing a rolled piece of reflective glasses-shaped film over my eyes that snugged up against my temples. My co-workers thought it looked cool, I got comparisons to Lady Gaga and the Terminator.

The eye scare was May 5. Since then, I’ve had a clean mammogram, meaning it’s been nearly a year and a half since breast cancer that had spread to my axillary lymph nodes was removed and I’ve been NED, “No Evidence of Disease.”

Of course, it bothers me that I didn’t get a definitive explanation as to why I was seeing double. My mother asked if I know too much, if my desire to stay on top of LFS is causing me more anxiety than necessary. There is no question about it — I often feel like I’m just waiting for the other shoe to drop. That said, I’d still rather know than not know, because knowing means I’m hyper-vigilant. Getting every little thing checked ASAP means a much greater likelihood of catching real problems while they’re most easily treatable.

And I’m all the more grateful for every time it turns out not to be cancer.

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Andi
Andi

Written by Andi

I’m a Li-Fraumeni Syndrome genetic mutant, which means I’m susceptible to developing many different types of cancers. I dig photography and (mostly old) music.