Brain Tumor Thursday (insert something witty and profound here)

First off let me say that if you found me via Twitter, welcome in. I’m a newbie at it so please be patient with my hashtag skills or lack thereof. Please take a moment and pop around this blog to find the area or subject regarding my brain tumor experience you’re interested in. I will try to get back with any questions as soon as I can. But be patient- I don’t check in anymore as often as I used to.

Actually, it’s been so long since I’ve stopped in here, I have to get re-familiarized with my own blog. How bad is that?

For the people who have been following me for a while, rest assured that I’m still here! Still alive and kickin’ (higher than usual, actually.) 🙂

It’s true, though. I’ve been insanely busy –for me– the past couple of months.

My family and I did another Color Run recently and, like last year, had a blast. I highly recommend it. The beauty of the Color Run is that you don’t actually have to run and there are plenty of people who just walk it. Myself included. (If you’re thinking of doing one of these yourself, make sure to take a handkerchief large enough to wear around your neck so you can cover your nose and mouth as you run through the color. Even though we did that, we still were blowing blue color out our noses for two days afterwards.)

Coming up shortly, we’ll be walking our first BT5k. If you’re not familiar with the BT5k, it’s a 5k walk for the ABTA (American Brain Tumor Association) that helps to raise funds for brain tumor research. We haven’t reached our goal in the fundraising department yet, but there’s still time. I’m nothing if not optimistic.

I’m also starting a small cottage baking business, which has taken up much of my free time. I get to share my unhealthy love of carbs and sugar with the world!

It’s nice to be able to think about something else other than the tumor for the first time in a long, long, time. If you’re new here or you’re having a bad day – whether it be mentally or physically (really, is there a difference with this?), please, please know that there’s always hope. I never thought I’d have room to dream again, and here I am, dreaming new dreams.

Much love, all.

I’ll post my Twitter link in a bit. 😉

… like I said, I’m new at this and can’t figure out how to do a direct link. In any case you can find me on Twitter (only VERY occasionally) @PrismBalance . Hopefully you Twitter savvy peeps can figure out how to find me from there. Unless of course that’s how you found me to begin with. Oh, phht! Whatever. I’m a dweeb.

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.

Color Running Part 2, The Meander

I did my first 5k this weekend, the Color Run. I don’t know that I’d do another.

But I did it, darn it.

I almost took a precautionary pain pill, but I didn’t. And then I forgot them at home. I’m glad I did. (Normally new things, a long drive, a long walk or crowds trigger some head tension. This was all of the above.)

I didn’t need it.

Well, maybe for my feet, but not for my head.

(Insert cheering crowd here, doing the wave.)

It was fun. The family and I had a great time. We were sore and colorful by the end. We were passed by every age, weight, and affliction, but we were also ahead of the same.

I wasn’t there to race against anyone except myself. I walked, meandered mostly. It’s the first time I didn’t come in last.

So, in a way, I won. My family won. I’ll stick that in my back pocket and in my memory, and run with it.

Color Running

Earlier this year, I convinced my family to do something I never thought I’d ever do in my lifetime, let alone after brain surgery:

A 5K. (insert audible gasp here)

I’ve pointed out a few things in prior posts, like the fact that I’m overweight and a hermit. Also, the thought of actually walking out my door and driving (in my case, riding) over an hour to a race, just to get out and participate, had sincerely, seriously, never crossed my mind. Maybe once, but I was joking with myself.

I mean, the chances of me ever considering a 5k were right up there, say, my chances of getting a brain tumor.

This new mindset of mine though, it’s a trouble maker. First, there is actual vegetation in our refrigerator now on a regular basis, (beyond the ever present garlic and onions), and now I absolutely shock my family when I mention I want to do a Color Run.

Okay, we’ll be walking. But it’s a goal. You hush now.

When I first learned about Color Runs, about two years ago or so, I’d think to myself, ‘Wow, if I ever ran, that’s something I’d like to do.’ The thought of blazing through all of that colored powder appeals to me in some sort of earthy, strange way, I can’t explain it.

This past winter, Color Run information popped up somewhere I was lurking online, most likely one of those healthier food sites or some such thing, and I took pause. Hmmm….

So I clicked over to their main site. When I did, my thought process went something like this:

Ack, 5k. Ok, you’re allowed to walk. I can walk. And by the time the race is here, and given further healing on my part, I’ll be able to walk better. Kid’ll want to run, but too bad. Because husband will want to walk, too. Hmmm. Ok, a 5k is approximately 3 miles, give or take. The closest race is about an hour or so away…. hmmmm…. Everyone looks like they’re having fun, lovin’ the color and the camaraderie… I have time to ‘train’ (even I took that word lightly in my head)… The sign up fee isn’t awful. Hmmm….

So, I went out to the dining room, and had to warn them about what I was about to say and ask. You know, this was completely out of character for me, after all, and something I’m sure neither of them had entertained at any point, either. To shut me up, To make me happy, my husband agreed, so I registered the three of us and it was a go.

I programmed the Couch to 5k app into my phone, but didn’t use it for a month and a half. It’s how I roll. But, I’m still proud to say I’m starting my 4th week today without missing a day, other than the days off programmed into the app. I should mention here that the Couch to 5k program is a program where you do a warm up, then alternate between walking and jogging for the time allotted. I can’t do this yet. So, I’ve modified what I do. I walk at about 2.5 an hour when it says to walk, and then just walk faster, at about 3.5mph when it says to jog. Jogging isn’t feeling right or good or healthy yet, so I’m allowing myself this. This is quite an accomplishment for me at any stage in my life and I’m pretty happy about that.

I know, that without the 5k app, I would have been able to do (walk) the Color Run, but with it, I feel it’ll be that much easier, and my head’ll thank me during and following the race. It has been warned, after all.

Then I explained it to my Mom:

‘Hey, Ma, I’m doing a 5k.’

‘What’s that?’

‘It’s a 3 mile race, but I’m walking. You can walk. Important for the noggin’ and all.’

‘What for? Tumors? Alzheimer’s? Something like that?’

‘No Ma, just for fun!’

‘Why? Where at?’

‘It’s about an hour away from here. To prove to myself I can, as part of my recovery. Oh, and as you work your way through the race they… throw… colored… powder…. on… you….so you end up a multicolored mess by the time you’re done.’

I knew this was coming. I knew that it would sound completely ludicrous to my monochromatic mother.

‘So, let me get this straight, you guys are going to get ready, drive an hour, walk three miles, have people throw colored s*** all over you, then come home?’

‘Um, yup, pretty much.’ I grinned so hard she must have heard it.

So, chalk this up as another one of the things my mom thinks I’m crazy for doing. What’s new? I’m pretty sure she’s happy that I’m actually able to do anything like this, even if she doesn’t understand it.

I’m adding color to my life, both literally and figuratively. It’ll be a personal triumph for me. Not much to some, but the biggest deal to me, even though I can’t run and shake my head all around.

At least yet.