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Remi Phillip N.

Survivorship is difficult. Recovery is long.

My journey began in May 2000, at age 24. I was diagnosed with a benign Hypothalamic Germinoma (pituitary tumor). I had experienced a myriad of symptoms for over a year and a half before I was finally diagnosed. I then spent 5 ½ weeks in the hospital being treated, followed by 2 ½ months of chemotherapy at two week intervals, and finished with 3 weeks of brain radiation. I was given the ‘all clear’ in December of 2000. I returned back to undergraduate school and began the process of healing.

Due to damage to my pituitary by the tumor, I had to begin a regiment of hormone replacement therapies. I am deficient in 5 different hormones, three of which cause fatigue. For over 15 years my levels stayed within ‘normal’ range (even though the fatigue would force me to sleep between 12-14 hours per 24 day), and my scans clear….

…until October, 2015 (age 39). For about a month, I had experienced numbness on the right side of my face, back behind my right ear. Once pressure had begun in my right eye, I started to believe I might have a shunt failure. I have a VP Shunt implant behind my ear from 2000. I called my neurologist to express my concerns, and I was urged to get checked out immediately, to diagnose the issue.

I live a block away from a hospital (not my primary hospital) and walked to the ER. After having an MRI and waiting for 5 hours for the results, I was told I had a ‘very large tumor’ over my right eye, and that ‘the neurosurgeon on call has seen the scan and wants to take it out. Tomorrow.’

Um…alrighty then? The neurosurgeon came to talk to me, explained what it was. He could tell from the scans alone that it was a Meningioma. Benign. It was floating in between my brain and my skull. On the scan it looked enormous, but was actually more like a thin pancake. He was confident that all he would have to do is open up my forehead and pull it out. Um….alrighty then. I was relieved. It made sense to me, so I knew I had no other choice. I said YES to the surgery.

The initial MRI was on a Thursday. The tumor was removed on Friday morning. I spent two days ‘recovering’ in a private room, and was home on Monday afternoon.

I say recovery is long. It took me 10 years before I could use ‘CANCER’ in my story. It was in 2010 when I first cried for ME (longer story). My emotional recovery had just begun, and I was finally processing what I had been through the first time around. And then I was thrown another wrench into the process. Recovery was going to take much longer.

I learned about Camp Koru through my AYA Cancer support group. I was so stoked when I was approved for the trip by my doctor. And I was even more stoked when my travel was covered by the Cassie Hines Shoes Cancer Foundation.

Going to Maui in November 2016 was….WOW! Spending time with other survivors / fighters, epic surfing, stunning vistas….WOW-OH-WOW! I was forever changed by the experience. I came home more centered, more in tune to who I was as a cancer survivor, as a member of a vast family of fighters. Despite what I may have had to endure in my life, at the end of the day, none of that matters. What matters is that I am STILL HERE. That I am LIVING LIFE. That I am CONNECTING. It’s easy to say ‘don’t sweat the small things’, but you know, it’s true. Being in the moment is all that matters to me. My experience at Camp Koru was a weeklong moment, one that I will never forget!

Peace!

Remi aka PALUA KOA [‘Double Warrior’]

 

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