Nine years ago, I made the decision to try to have a benign pineal lesion removed. Not much is known about pineal lesions - many are asymptomatic, but it's difficult to distinguish between a pineal cyst (often asymptomatic, but not always) and a pineocytoma (rare, slow growing tumors that cause a lot of issues). Ultimately, the decision is largely left up to the patient if the neurosurgeon believes they can do the surgery and they have symptoms. The pineal region is a very risky area to operate in, so the decision isn't made lightly and the individual needs to decide if it's worth the risk (with their medical team's advice, of course).

For me, it was worth the risk: life had become so unbearable that I was planning to kill myself if there was nothing that could be done. If the tumor grew, it would block the flow of CSF (cerebral spinal fluid) through the cerebral aqueduct or press on everything more or rupture - all awful options that could result in more suffering and either surgeries and/or death.

If everything was stable and stayed the same as it was, it would be miserable. I was barely surviving: sleeping about 20 hours a day, not eating much, bad migraines and pain, dizzy, occasionally losing my vision. I was missing out on my life and it had become a painful existence that I couldn't handle much more of.

So for me, taking the risk was the only way I could potentially go on. I cried, stared at my scans, asked my doctors, family, and friends their opinions, but it always pointed me back to taking that risk. I didn't know if it was a fatal mistake but it was my only way forward.

That was nine years ago.

It's been a very difficult time, but I'm still here. My mind, heart, and soul are all the same; my body is very different. I have good days, bad days, and those in between - but I still have days.

I've done a lot since then - but I'm not done yet!