Alive and Well

Just the holidays. Weather. No drama, no out of the ordinary health concerns.

I think about this (the blogging, specifically the brain tumor blogging) community often. I think about joining Twitter. I still might. I’m inclined to. To follow the Brain Tumor Thursday ‘tweets’. Maybe a few of my favorite celebrities. Not many ‘real’ people though – people I know in my real ‘fleshy’ life. That would be weird.

That causes trouble. And time that I don’t have. That’s what I have Facebook and Pinterest for.

They’re enough.

So maybe Twitter, one day. Not today.

I’ve signed up for the Color Run again this year, along with my family. We’re going to register for our local BT5k (Brain Tumor 5k) soon, when funds allow. I love the thought of doing one of these 5k’s with a purpose so close to my heart. Head. Whatever.

I’m really excited about the BT5k. Excited and nervous. Excited because, hey, other brain tumor survivors! I get to raise money to try to help! And nervous because, hey, other brain tumor survivors. I guess I just feel, still, like a newbie to all of this. (Like I had some kind of choice, joining some trendy new group.) I know that there are people both much better off than me and those that are suffering much, much more than I ever did. Lord knows there are people who understand it more than I do. I’m not talking the neurosurgeons here. Sure, they know the ‘technical’ aspect of it, but there is NO WAY you know how ‘this’ is until you experience it.

I hope you never have to. (But if you are, I’m here if you want to talk.)

Because I chose to block out the ‘technical name’ of what my tumor was/is, I feel at a loss. I suppose I am. I do okay with non-tumor people, because all they’ve cared is that it’s a tumor. I have a feeling that won’t fly at the 5k. People are going to want to know. People are going to ask. I’m just going to have to tell them that I am a coward and that my choosing not to know is a self preservation tactic.

*sigh*

All my life, I’m a wuss. But I sleep well. Usually. I hope people understand why I’ve decided, so far, to stay ‘in the dark’ about my tumor’s label. The day will come when I’ll ask. Maybe I’ll have to, or maybe I’ll just decide.

I don’t run past many survivors at all that don’t know the exact name of the type of brain tumor they have and the exact technical region of the brain it was located. I mean, I can tell you approximately how large mine was (is), and the approximate location, though I’d have to point to it on a MRI. I just… blocked everything else out. It’s benign and that suits me fine for now.

Comparing symptoms and recovery, however, is a different story. I’ve said before that all of this brain tumor stuff is complex. Multilevel. Faceted.

Most cases I’m familiar with have stories like mine, but with similar, not identical, symptoms. Most also have similar, but not identical, recovery stories. Some considerably better than mine, and some much, much more tragic.

Having a brain tumor removed isn’t like, say, having a root canal where only a limited number of horrific things can happen. There are an infinite number of variables that effect the surgery as well as recovery. The patient’s prior health and pre-existing conditions, the health during the operation, the diet and exercise following the operation. The qualifications of the surgeon, the nursing staff, the hospital. The kind of tumor, the size, the ‘meatiness’ of it, the location, the duration of the surgery, how long they were/are ‘in’. The list goes on and on and on. (My surgery, for example, was only supposed to last 3 hours. Because the tumor was more stubborn than the MRI led them to believe it would be, it ended up being over 6 hours long.)

I’ve said it before. They literally tap into where you live. If they disturb the gears along the way in a certain area – speech, motor skills, balance – recovery from those things takes some doing. Or undoing, as the case may be.

I’ve read cases where people go out running a few weeks after surgery. Or get on a plane 6 months following. I couldn’t have done either. (Even if I were inclined to do either.) The pressure in my head and my lack of balance would in no way allow it. I’m just getting so now where I think my balance may return to almost normal one day. It’s livable now, but some days, hours, I fight with it.

Brain surgery isn’t a ‘one size fits all’ type of deal. It’s a custom job, with a custom recovery.