What do you mean I have a brain tumor?
“Brain tumor? …didn’t see that one coming”
I took a small break from posting to the blog and for good reason. On May 6th, 2017 I was diagnosed with a rare tumor called an Ependymoma. . Just as I’d finally managed to get control of my TRT and uninvited guest decided to show up to the party.
In 2012 I experienced two seizures that seemed to have come out of nowhere. At the time it was thought to be caused by stress, lack of sleep and the fact that I’m a bit of workaholic. Like brain tumors, the cause of seizures isn’t always known. After a week or two of recovery I felt “normal” again and experienced little if any symptoms. Life continued on as normal. In 2015-2016 I started to experience new symptoms. I’d often feel tired even after a proper night’s sleep. I figured at the time it was probably just a little out of shape or needed to ease my workload. That and the fact that as most of us know, sometimes our hormones can get a little out of whack. “I should probably get my E2 levels check” I thought. Towards the end of 2016 my symptoms become more unusual. Some of those included leg twitches when I laid down at night, feeling even more tired than usual and a few unsettling moments were I couldn’t quite remember how to play the piano. Again though, I passed this off as just stress or perhaps even diet.
In March my doctor inquired about the seizures I had in 2012. I had wanted to get cleared of this and he asked if I had followed up with a neurologist. I explained that at the time I was a “cash patient” and had not followed up. Now insured, he wrote a referral to see a Neuro located in town. I was scheduled to have both an EEG and an MRI “just to be on the safe side.” While I passed my EEG, my MRI scan showed a growing tumor located with my 4th ventricle. An Ependymoma.
My first thought was “I can’t have a brain tumor. That only happens to people on TV or Youtube.” The thought of having a tumor felt surreal. Before my Mother married my adopted super Dad, we experienced a lot of hardship. We went through women’s battered shelters, abuse, a kidnapping and a host of other events that really shaped who we are as a family today (You want to meet a warrior, meet my Mom). I vowed when my children were born that I would do everything to protect and provide a safe and stable life for them.
At night time before bed I always told my kids “Dada can defeat anything. Even monsters. Just look how big Dad’s muscles are.” Though I hadn’t worked out in a while, my kids smiled and were convinced that Dad could take on any threat be it dragon or monster under the bed. I can’t handle the idea of having to tell them one day that Dad was defeated by something the size of a small walnut.
My Neuro sent me out for another batch of MRI’s to find out if my tumor was metastatic or primary. (Basically attempting to figure out if this thing is only growing in my brain or if worse, has spread from somewhere else in the body). Those MRI’s confirmed it was a primary brain tumor and did not originate nor spread to any other place in the body.
After hundreds of hours of research and many phone calls, I’ve managed to get an appointment at Cedars Sinai to see Dr. Black, one of the best doctors in the country. The nice lady on the phone mentioned he is difficult to see but, their office immediately called me back after hearing about my case. We are paying cash out of pocket for this visit while we hope and carefully work to try and change my insurance to a PPO (and failing that, we’re really not sure what to do).
And here I am today. While we won’t have anything definitive until after my appointment, the cost for treatment is likely to be astronomical. Dr.Black’s office thought it best we wait until I had my 6 week follow up MRI. (the “big one” to check for growth).
No matter the case, we’re staying positive. A proactive can do attitude is without a doubt, the best medicine at this point. 🙂 In the meantime I’ll be post back here more often. It helps keep my mind occupied.