Giving Up Control

What's up everybody.. It's ya boi Tron.

Yesterday, I watched almost all of Matt Chandler's Video Blog that chronicles his journey from before his surgery, all the way through radiation and chemo. To give you a short synopsis, Matt had a similar situation as mine; no signs leading up to a seizure, the seizure forced an MRI, which led to the discovery of a grade 3 oligodendroglioma. The main difference was Matt's was on his right frontal lobe. Mine is on the left frontal lobe, which for a right handed person, is exactly where the speech and fine motor areas are. The size and location of mine make it much more risky to operate on, which is the reason they are adamant about having an fMRI on hand before surgery. Here is a pic to give you an idea of what we are dealing with (the large, baseball size mass is the tumor):

Keep in mind, every single tumor is different. They are all very individual and have their own intricacies, but watching Matt's video blog helped give me an idea of what my family and I can expect in the coming weeks.  

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Yesterday was my first really hard day. It seemed like I couldn't control my mind, which is incredibly frustrating. I was getting really aggravated when I had to make simple decisions like where we should eat. I would get hyper-focused on certain things like fixing the link to this blog on the youcare.com website, so that you could actually click on it, and not copy and paste it into the browser (I was obsessed with obtaining the data of what the referring site was). I would work myself to the point where I would start having partial seizure symptoms. ughhhhh. 

I think it is a combination of the anti-seizure meds, the tumor, and the seizures I had, but having to learn to control the seizures until the surgery has proven to be a much bigger challenge than I expected.

While we wait on the surgery, which is set for June 25, we decided to send the MRI images to Duke to get a second opinion. In the book Scrum, by Jeff Sutherland, Jeff talks about how a single tool, like the wheel, can change the course of the world. It is the reason that big corporations get turned on their heads by small startups who are able to be more agile than their bigger competitors. Hospitals are typically slow moving organizations, so all that to say, we are in search of any tool/procedure that can give us a leg up as we go through this time. 

Thank you all so much for your continued prayers, love and support. The prayers can truly be felt. Liz mentioned it in her earlier blog post, but it can definitely be tougher to receive than give, and we are so very humbled by your generosity. 

Much love.