So it is Brain Awareness Week!
Day 1. Although I’m a bit late in the day with this post…. forgive me.
This is really the first time I’m starting to post on this blog, both in honor of Brain Awareness Week, and because I have big, personal, health, brain related news.
I originally started this blog in order to work on and show some art related to my diagnosis of Epilepsy, while also using the blog and art process as a sort of art therapy – as a way to explore and work through my emotional feelings of the diagnosis as well as the physical symptoms.
Well, that was a few months back, and since then a few things have changed and developed.
My neurologist, Dr. Woo, made the suggestion that I see his colleague, Dr. Dan Kelly, to check on my cyst and make a determination about it being a benign cyst or a more dangerous tumor. While I had been a bit busy with some regular life things, at the beginning of the year I began to experience some more strange symptoms, including altered & blurred vision and vertigo (which I actually have learned to enjoy, as mine feels a bit like Alice in Wonderland’s “Eat me, Drink me” chapter; I’ll feel as though I’m growing and the room is shrinking and then vice versa). So I made the appointment with Dr. Kelly, who I then found out is a Neurosurgeon and Director of the Saint Johns Brain Tumor Center.
After hanging out in the waiting room for a bit (with this pretty cool painting) I got to see Dr. Kelly. He took a look at my MRI, and while he decided to have
another one done that day in order to compare the two, he basically told me that the cyst was really a glioma tumor that needed to be removed. He showed me the MRI and the location of the tumor, and explained that most likely they would go through my eyebrow instead of the side of my head. (This I was a bit relieved about since that meant they wouldn’t shave my head for surgery. Although I had thought if they did, I could MAYBE try to pull of the half shaved head, half long hair, perhaps ombre-ed brunette. I could start shopping primarily at Diesel instead of Anthropologie. Maybe get some additional piercings in that one ear…. I had a plan. But it wasn’t needed.) The next day, after having my second MRI, I talked with both Dr. Kelly and Dr. Woo and my surgery was scheduled for the next week.
My dad flew out to LA from Houston to take care of me during my surgery and recovery.
Of course they came and wrote a big YES on the left side of my face to make sure they operated on the correct side. I told them they were more than welcome to write it much larger, just in case, but they felt comfortable. I had also taken some valium, so I might have found myself more amusing than they did.
Post-op I was highly medicated, and I don’t remember taking pictures, but apparently I was functional enough to take one photo on my phone, use my Instagram iPhone app AND choose a filter, AND post it with some non-sensical gibberish to my facebook and twitter. Then, with my DSLR, I took a few self portraits, some blurry with weird shadows, but must have been happy with the last one on my card, where I found some light and it was in focus. Once again, I don’t remember this process at all.
So, now, it has been ALMOST 3 weeks since my surgery. I’m home, feeling much better. I’m just now starting to drive again and I’m getting the go ahead to do some light exercise.
I have yet to receive my official pathology report, but I do apparently have low grade glioma and will be talking with a Neuro-Oncologist about follow-up treatment (“wait & watch” vs chemo vs radiation) once we know what my specific glioma is.
That is my Day 1 of Brain Awareness Week and my truncated, yet long, surgery/brain tumor/brain cancer update.
I want to let you know, whoever you may be, that this does NOT mean that this blog has now become my blog for venting about my health. It DOES mean that it is changing and forming. Yes, it is, for me, still about my own project and process, and a place for conversation about diagnosis, the intersection of art and science, stigma vs. society, and health in general. But I think its growing to include more specific news and research about health and the brain, a place to highlight important events, and look at other body related art and photographs. And sometimes a place for me to vent or you to ask questions about my experience if you have them.
And FINALLY, I just want to leave you with the photo I started with and add a little explanation. It is actually a photo I took of myself on the 2 week-a-versary of my surgery to show my healing progress (and to make up for my morphine induced black-eye picture that found its way to my social media groups). And because this is really my MRI project blog, I added the additional MRI image next to it. Perhaps as a way of showing progress. Perhaps as a way of showing what I’m recovering from. Showing what you can’t see. I’m not sure. I’m still working and discovering.