Brain Tumor Social Media a.k.a. #BTSM Tweetchat (1st Sunday of the Month)

*Update* The #BTSM Tweetchat is held the first Sunday of each month.


The “Brain Tumor Social Media” Twitter community successfully organized its first “tweet chat” a few Sundays ago, 7 PST/10 EST. The chat was so successful that Cure Today’s Elizabeth Whittington wrote about it just a few days later on their blog.
The #BTSM group will continue convening through the tweet chat format each Sunday from now until Twitter no longer exists. Join us!
An important thing to remember is that #BTSM is a patient-run Twitter community and is not owned by any organization, nonprofit or otherwise. We are for patients, by patients. #BTSM tweet chat moderator @CBlotner_ is working on organizing guest tweeters from the brain tumor community, like physicians, researchers and advocates.
Just in case you don’t use Twitter, or do use Twitter and have never participated in a tweet chat, here’s how you can participate:

How to take part in the #btsm tweet chat

1. Register for a Twitter account. Scared of Twitter? Hey–if you have a Facebook account, you can find your way around Twitter. 
2. Stay logged in to Twitter… then visit TChat.io
3. In the box in the middile of the TChat home page there is an area to enter a “hashtag.” (Find out what a hashtag is.) The brain tumor social media hashtag is BTSM. Then click “Start Chatting.”
4. The #BTSM tweet chat page will load and you will see all tweets where a Twitter user used that #BTSM hashtag.
5. The page will automatically refresh itself every few seconds to load more tweets.
6. When you are ready to take part in the tweet chat you must click the “Sign in” button in the upper-right corner of the TweetChat.com page. TweetChat will then want to link your Twitter account to the TweetChat website. This is safe to do! Click “Authorize app.”
7. Once you are logged in there will be a box at the top of the page where you can enter your message (tweet). This box will automatically add the #BTSM hashtag for you.

Easy, right? (I know some of you are shaking your fists at me right now.)
Leave questions for me in the comments… or tweet me at @TheLizArmy. You can also send questions @CBlotner_, the #BTSM TweetChat moderator.

Watching Water - Alias

Recently came upon an old box of CDs I haven't listened to in years and years and the other day found this track, Watching Water, by Alias. Been listening to it since. It's always been a favorite of mine, but it's even more poignant now considering everything...

Listen to it here:

Here are the lyrics:

Intake ambiance a tool for meditation
Progressing towards the clouds with at whom I am complete
Defeat the chains that restrain an eager sensation
Equal balance in and out, all inhibitions shall deplete
(X2)

I'm trying to break this writer's cramp, massage my hand and daydream
Out the window innuendo, watch the water find it's path down the glass.
It seems, erratic direction, it's only perfection.
Rest my head inside my hands, pace back and forth inside my mind.
I wish sometimes I wouldn't reminisce so much.
Such things, tend to make one reflect and dissect situations to an extreme.
Hard now to redeem what was there before
No more gone are those days and ways have parted.
Gone from feeling solid trust to outsmarted.
Anyway, I'm now moving on to a distance far from yesterday,
It's best this way.
I feel as though I've missed this moment of truth
Outcome uneventful. I've lost the ability to feel sentimental
I can stare at a puddle and see a million places I love.
It's comforting thoughts of places I've been, places I will never see again.
Send my love to all who were there, wishing I could crawl back in.
But, I've transformed and the pieces wouldn't fit, so the sore necks will cease.
Eyes searching to the sky to try to find some form of peace
And I keep pulling up blanks, yet I'm wearing this mask for the sake of others.
We all miss things I suppose, we must let go, well I'm not ready.
Just let me sit in silence and soak in what's trailing down the window,
To cleanse my emotions, to begin the process of preparing myself.

Intake ambiance a tool for meditation,
Progressing towards the clouds with at whom I am complete.
Defeat the chains that restrain an eager sensation,
Equal balance in and out, all inhibitions shall deplete.
(X2)

I watch the drop join it's friends and become one with the crowd.
Relating all too well, forcing me to sigh out loud,
Look into clouds, to envision, the inside of my head.
I'm turning leaves at this turning point. Remembering what they said,
As they drove off one by one.
They left taking pieces of me until I felt empty inside.
Already looking forward to that day when I'd be returning.
And I hadn't even left yet,
From then on I took the inside out approach.
I'm granted lots of time to think when when your new position is coach.
And your team is sleeping the whole time, when it's 2:40 am in the morning,
And you're in the middle of nowhere with the buzz of the AM radio
The only one that's there.
Think a lot about life, that's where it all began for me,
The more I thought, the more I began to clearly see
Absolutely every aspect of my life in a new light.
I figured out my Rubix Cube...well I got it somewhat right.
And things are coming together as I slowly come undone.
And the occurrence known as the "it" is swept under the rug,
And now my burden weights a ton.
But it only makes me stronger and I refuse to break.
I'm letting things pass by, for the family's sake.
Just give me a picture of the truth so I can hold it near,
And watch the rainfall, syncopated with one lonesome tear.

Intake ambiance a tool for meditation,
Progressing towards the clouds with at whom I am complete.
Defeat the chains that restrain an eager sensation,
Equal balance in and out, all inhibitions shall deplete.
(X2)

Hello. Sorry I haven't posted in awhile. Sometimes it can get overwhelming to journal or blog about my brain tumor. It's a part of me now always, but of course I just want to get away from it from time to time. Blogging about it can bring me back to a place that I want to try to avoid as I rather just move on with my life as best I can.

So what have I been up to lately...Let's see, I just got back from a trip to Mammoth Mountain Ski resort and had a great time. I was a bit hesitant about going, but so glad I did. Funny thing was that when I was getting my boarding gear ready at home, I found that my board pants still had the lift ticket attached on to it from the last time I had gone boarding. I looked at the date which read 1-29-11, basically two weeks before my brain tumor diagnosis. Boy, little did I know. It reminded me again of just how quickly circumstances can change for someone.

I still remember that day. I had gone up to a local resort with my two friends eagerly awaiting to try out my "new" used Burton Custom board I had just gotten. It was a fun day and my board did not disappoint though the day on the slopes did end with my crashing into a fellow boarder. Yep, my snowcap flipped off my head and everything. Oy vey! However, we finished the trip off with a stop at an eatery I always go two after boarding. The tradition of going to this particular restaurant had started with another group of friends and I and I was more than happy to keep it going with these two friends. During the whole time, I remember us chatting about going up several more times that season and how forward I was looking to it. *sigh*

Anyway, back to Mammoth! As I hadn't boarded since 2011, I was a bit unsure because of the rust from the layoff and from everything I've gone through that's affected me physically. I decided to drive up early and did a half day of boarding on Friday. Sitting on the lift in the spring like conditions, I gradually became more convince it was the right choice to come. As the top of the lift came closer, the familiar fear and thought of not falling over while getting off the lift came over me. However, instead of my usual dread (getting off the lift, it's a mental thing for me!), I actually welcomed it as it felt like old times again. So off the lift I went and voila, slid all the way to the bench with no problems! Before my first run, I breathed in the crisp air and just took it all in. A part of me couldn't believe I was here as I didn't think I would be able to board again. However, there was still the small task of actually boarding! I thought to myself, "What if I can't do it?" Then I thought about what Dr. Wertheimer, told me about how I need to be less of a human being and be more of a human doing. So I strapped myself tight, got myself psyched up and went down. Just like old times...

1-22-2013 MRI Results

A bit late in posting, but my MRI last week showed my tumor to be stable. I will have another scan in three months.

My next MRI and meeting with Dr. Hu is scheduled for January 22. Let's see how this goes. I think if this scan shows my tumor as stable, Dr. Hu might think about moving to a 6-month MRI schedule. We'll see.

Hi, I'm still here. Will starting giving some updates soon again. Next MRI will be in January. My next meeting with Dr. Chung will be in February which will include a standard EEG test to see how things are. At my last visit with Dr. Chung, he stated that if things go well, that I may no longer need to take Keppra by the end of 2013. Most likely I will go on a taper schedule starting sometime in May if I am incident free (i.e., no seizures). As of right now, I am completely off of the Vimpat.

I also have an appointment scheduled with Dr. Wertheimer in February as well. This will be a long one as Dr. Wertheimer will be conducting a more comprehensive psyche evaluation test in addition to coming up with a cognitive rehabilitation plan.

Overall have been okay. The 3-4 weeks prior to Thanksgiving were great. I was basically symptom free and almost felt back to normal. However, since Thanksgiving, it's been up and down and some symptoms that haven't surfaced in months came back such as flashes of dizziness and wooziness. Although things are still a bit up and down, I have noticed a bit of improvement and hope it remains so.

10/23/2012 MRI Scan Update

I had my regularly scheduled MRI scan yesterday which showed the tumor as stable. Dr. Hu still wants me to stick to the 3-month MRI cycle for the moment so my next MRI will be in January. However, he did mention that if the tumor is stable at that time, then I may go to the 6-month MRI cycle. It’s a double edge sword. On one side, it’s a good sign as it means that the tumor is stable. On the other side, I can see it causing anxiety having to wait so long between scans. For the moment though, the tumor is good so I am relieved.