My Story

So if you're new to the blog and don't want to go back and read the entire thing here is a brief summary of how I got here.

In April of 2011 I started having migraines. I called them migraines because they would appear every few weeks, be extremely severe, cause nausea/vomiting and generally last 1-3 days. At the time I was in between changing jobs at work and rotating day/night shifts (which I hadn't done previously) so I attributed the headaches to that. As the months went on the headaches progressed from every few weeks to weekly. At some point in here I saw both my primary care doctor and my eye doctor hoping for an explanation or even a prescription for migraine medication because everything I was taking over the counter was not working. Neither doctor was able to help me though or find a cause for my headaches. "Just migraines".

Starting late August the headaches became a daily occurrence and if I had to work I worked through them and if I didn't have to work I slept through them. Sometime in September the visual symptoms started, first as "flashers" in my vision, then tunnel vision and finally progressed to vision loss/blackouts with sudden position changes, mainly sitting/standing, squatting down to the floor/standing. The blackouts would last anywhere from 10 seconds to a minute. That's when I decided I needed to see a neurologist, that something else must have been going on. I started searching though many doctors could not get me in for months! I finally found someone who could take me in 5 weeks and I made the appointment.

When I finally got in to see Dr. K (November 28th, 2011) he knew something was up as soon as I told him about the blackouts. He examined my eyes and noted severe swelling of my optic nerves and immediately sent me for a more in depth eye exam and MRI. It was that evening he told me that they had found a large brain tumor in my right frontal lobe. He advised that I be seen a neurosurgeon at Duke, Johns Hopkins or Columbia.

The next morning I made my was to the ER at Johns Hopkins and found myself admitted to their Neuro Intensive Care Unit that night. One week later on December 6th, 2011 I had a 5.5 hour surgery to remove the tumor. My surgeon was extremely aggressive and believed to have gotten most of it out. I went home two days later.

Hopkins diagnosed me with a "difficult to classify low grade astrocytoma with unusual features" (unusual features being those of higher grade tumors though Hopkins did not feel that it overall met criteria for a higher grade). I have since met with both a radiation oncologist and a neuro oncologist. For now I am being closely monitored with MRI's every three months as those doctors feel there is a high chance for tumor recurrence (at which time it would be possible to have another surgery and radiation with or without chemo). I received second opinions on the pathology from Dana Farber/Brigham and Womens & Memorial Sloan Kettering. Both those institutions diagnosed a Pleomorphic Xanthoastrocytoma with Anaplastic Features. Upon further discussion with my surgeon he believes there are just technicalities in wordings and that all the institutions are essentially on the same page diagnosis wise. Trusting in my team I have decided not to get second opinions on treatment. For now I am continuing to have close follow ups with MRI's every 3 months. These MRI's will likely eventually space out a little but for now I am comfortable with close monitoring.

My most recent routine MRI in July (2013) showed new tumor growth. I have since had that tumor removed and am recovering well. Again pathology was difficult to identify but they agreed that it is now a high grade asytrocytoma but unable to classify it. It still most closely resembles a pleomorphic xanthoastrocytoma with anaplastic features, but not close enough for them to diagnose it as such. I will be starting both chemo & radiation in a few weeks at Mass General since the daily travel back and forth to Hopkins will be too difficult. I am hoping once the radiation portion is complete that I will be able to move back to Virginia and hopefully go back to work while on the maintenance chemo.

If you want all the nitty gritty details about my diagnosis and surgery you will have to go back to the first post and read from there!