Today, August 14th, is the three year anniversary of the day I received the phone call from my neurologist directing me to the hospital, because he’d seen a glioma on my MRI scan. And as of today, we have a new plan. Awake craniotomy in September. (Updated to add – date will be September 9, 2015, kickoff at 8 am CST).
On August 14 three years ago, my neurologist phoned me on my cell phone and told me to go to the Emergency Room. Since then, a number of people have commented to me that they find it surprising I was informed that way. I didn’t think of it at the time, but in retrospect, I actually prefer that to having to wait for a follow up appointment, wonder what they’d seen on the scan, etc. And it turns out he had ulterior motives. He wanted to get me on with a very specific neurosurgeon, who happened to be on call that day, so he knew I’d get in with the surgeon fastest if I went to Emergency. And I’m pretty glad he chose to do that.
Over the past three years, my surgeon has taken a cautious approach, recommending watchful waiting to see whether my tumour would grow, and watching for new symptoms. When my last monitoring scan in May showed growth, and I’d started having a few minor new symptoms (disruption in handwriting, clumsiness in my right foot going down stairs – but not up??), he said “I think it’s time to do surgery, and we’ll do it with all the bells and whistles at our disposal”. I like that plan.
It turns out that at the University hospital here in Saskatchewan, we have access to a terrific functional MRI research program. Although it took six weeks to get the scan, it was worth it. I saw the results with my surgeon yesterday. It’s absolutely amazing to see pictures of what areas of your brain are activated when they ask you to perform simple tasks, to see small regions light up so distinctly. It really made me think about the wonder of how we all work, and that we can image it like that.
My fMRI scans showed that my language and reading functions, which were one area of concern, because my tumour is in my left cortex where those functions are usually located, mapped well away from the lesion. We knew sensory and motor tasks would be key, because the tumour is in the parietal lobe, just alongside (posterior to) the sensory motor cortex. Minor motor seizures are what first took me into the neurologist, in fact. The fMRI data showed that these functions map right up to the tumour, so my neurosurgeon is recommending awake craniotomy. In this type of surgery, the patient is awake during the procedure, and can respond to questions or tasks set out by the surgical team, to make sure that the surgeon can remove as much tumour tissue as possible without disrupting critical “eloquent” functions such as motor abilities or speech.
This sounds sort of ghoulish, no? I always picture that scene in Hannibal when Ray Liotta is having dinner with the inimitable Anthony Hopkins as Hannibal Lecter. Who wouldn’t? You can’t unsee that!
Practically speaking, this approach offers the best chance of getting as much tumour out as possible, reduces risk of post-operative complications and losses of function, and has been shown in studies (1, 2) to help the patient feel more like a part of the team, with an active role in making sure the procedure goes well, and more in control of outcomes.
I feel like I’ve spent the last three years preparing, with the knowledge that I’d be here eventually. And I’m ready. I know I’ve done everything I can to get my body healthy, to focus on present and mindfulness, and to come to terms mentally with where my life is. And I will admit that I’ve always harboured a quiet desire to shave my head. What can I say, I’m a child of the Sinead era.