I was diagnosed with my Grade II oligodendroastrocytoma in 2013, after having deja vu seizures all throughout fall of 2012. Such weird seizures that even as a physician myself, I didn’t know what they were(and I’m good at self-denial, of course!!). I had surgery in January 2013 and only a third of the egg-sized temporal lobe tumor could be removed from behind my L eye muscles, as otherwise I would lose verbal and memory skills. I went on Temodar for a year(and ended up allergic to that, so added in a LOT of steroids—now THAT was a blast!!). I was able to go back to work by February 2014 with restricted hours, and the annoyance of expressive aphasia that worsened when I was tired. I was hoping to have 7-10 years before the tumor started growing again.
However, December 2017 was when growth was noted, and so I am back on Temodar and steroids. This time, it’s just harder. I have a 10 year old daughter and an 8 year old son, and I am so worried about them and about how my wonderful husband will be able to parent if I am significantly disabled or dead from this. If the chemo isn’t effective is stopping the growth, the next step is radiation, and side effects on my left temporal lobe, where the tumor is located, will affect my speech even more and probably my memory.
I hope for the best, but work to be prepared for reality. I am grateful for my neuro-onc team and seizure team, and for friends and family who have stepped up in ways I didn’t ever know I would need. I hope for the most high quality time with my kids as possible, and am trying to take care of myself during this 16 month chemo adventure I am on now.