Magic formula for a brain tumor awareness tweet?

As many know, I have been trying to raise awareness now for quite some time.  Somehow this week I created what has turned out to be an explosive tweet.  In was tweeted under the hashtag #BTSM and, as of the writing of this post, it had 1,715 retweets and counting. And those are just the retweets captured by Twitter and reported beneath the tweet, i.e, those retweets where the retweet button was used. I have not even attempted to capture any stats related to other forms in which the tweet has been spread around twitter.

The only thing that makes sense is that the photo was, in and of itself, compelling, but I never expected it to garner so much attention.  In any event, the fact that at least 1715 people has engaged with a tweet is both mind numbing and fantastic.  Perhaps this is when real change begins!

Embedded image permalink

The tweet itself can be found here.


#BrainTumorThursday Awareness Campaign for March 2014 and Q1 2014


It is exciting to discuss the brain tumor awareness campaign results for March 2014 because they anchor an effective first quarter of 2014.  We amassed around 10,500 tweets from nearly 6,000 participants, yielding approximately 97,000,000 time line deliveries.  The March numbers were influenced by a solid performance in the campaign last week.

Overall, for the first three months of the 2014 brain tumor awareness campaign, over 63,500 tweets from nearly 49,000 participants produced over 390,000,000 time line deliveries.  WOW.

There is one number reflected in the quarterly that I find suspicious: 49,000 participants.  It just seems to be too high.  In the past, I would not have worried much about the participant number; I was just focused on the time line deliveries.  However, I have recently become convinced that the number of participants is at least as important as time line deliveries, if not more so.  The bottom line is that thousands of people are tweeting and/or retweeting about awareness and touching time lines hundreds of millions of times.  We can help but increase awareness at these levels.

My last observation is that we are on track for over a billion time line deliveries in 2014.  That to me is a stunning and exciting fact.

February 2014 #BrainTumorThursday Stats

I think that we may have been spoiled by the lofty numbers accomplished toward the end of 2013: February totals appears to be off from January.  I use “appears” because, more so than is typically the case, the totals we get from third party apps have informational gaps.  I know that the totals miss at least 5 million impacts (deliveries to people’s timelines) and perhaps a good many more.  So for February, we will have to rely on the best information available coupled with what I hope is a rational guess on my part.  So with a huge caveat about accuracy, February looks like this:

92M Impacts

7,500 Tweets

3,700 participants.

Completely accurate or not, 3,700 participants is quite significant – whether a tweet or a re-tweet each one of those people knowingly took an action to further brain tumor awareness. Now that is something to build on!

Last #BrainTumorThursday for February 2014

You may have noticed that I didn’t report anything last week.  That was because there was a pretty big gap in the Twitter feed to third party apps, and I’ve been trying to get a handle on what was missed.  I’ve pushed that exercise to the February wrap up next week.  For this week, we’ll do a quick review:

Very roughly, about 16.8 million impressions, 1,400 tweets, and 700 participants.

This week’s superstars:

Have a great weekend

#BrainTumorThursday through February 14, 2014

February 14 is the halfway point for the month, so it makes sense for us to take a look at where we are. Over 44M deliveries of the hashtag to people’s feeds, nearly 3,800 tweets and about 2,000 Participants.

So far, February is lagging behind January.  To be fair, January did have 5 Thursdays.  Still, there is untapped potential for February.  Let’s “take it to the streets” this week!

Big contributors in the first half of February include:

#BrainTumorThursday: Second campaign in February

Shame on me.  I never got around to reporting the totals for last week.

Week 1: Around 23.5M Impressions; nearly 1450 tweets; and roughly 850 participants.

And now for this week.

Week 2:  About 13M Impressions; over 1550 tweets and around 800 participants.

For this week, I think we were probably impacted by the winter storm on the east coast of the United States. Nevertheless, the totals seem to be off.  I’ll delve in deeper when I am able to look at the first half of February.


Sheryl Crow and Brain Tumor Surgery- Part 2

This is part 2 of my thoughts concerning the article: Sheryl Crow: ”I have a brain tumour – but I don’t want it removed” that appeared in the tabloid the Daily Mirror.  At the end of part 1, I stated that I am pretty sure that I owe Sheryl Crow an apology and said that I would detail why in this post.  Be forewarned, this post will wander across a number of related topics, but I think it does all stay on the general point.

My mistakes last week were that: I didn’t notice that the story only showed up in a tabloid; l allowed myself to be sucked into the article’s title; took things out of context; and zeroed in on part of one sentence attributed to Sheryl Crow.  In retrospect, what I did was no worse than tabloid reporting – I sensationalized information about a celebrity to suit my agenda.  I apologize to Sheryl Crow (if she is listening), to my friends on Twitter, Facebook, Google+ and to the social media brain tumor community.

What got me worked up was what I viewed as a dangerous commentary on the gravity of a brain tumor diagnosis.  My worry is that people would watch Crow’s reactions to her brain tumor and make decisions based on that instead of medical science.  There is a sort of vacuum out there regarding brain tumors, and I just don’t want it filled by the wrong things.

Upon further review of the article, it appears to me that Crow has faced the reality of her diagnosis and had to make the choices we all have to make regarding quality of life.  Who am I to criticize her choices?  I have no idea of her particular circumstances.  All I know is that she has a meningioma, which is a benign brain tumor, one that grows slowly.  As with any tumor, so many factors matter: How big is it?  Where is it?  Has it “shown” itself with side effects (seizures, double vision, etc.)?  If it has shown itself, in what manner has it done so?  How aggressive is it? How old is the patient?  What is the overall health of the patient?  What attitude does the patient have?  What is the standard treatment and its risks?  What is the most aggressive treatment and its risks?  What would happen if nothing is done?  All of this makes for a very complex and difficult decision.

I can only assume that Crow has taken all these data points into consideration, together with any relevant other information to arrive at her treatment decisions.  Additionally, the whole cancer thing is not new to her having survived breast cancer.  The mistake that I and others have made or will make is to assume either that her decisions are right or wrong or that she is championing a course of action for others.

Now comes the difficult part of this post: my own situation and decisions are “just as bad” as Crows, leaving me even less room to criticize Crow.  The recommended treatment for my tumor type is surgery followed by concurrent chemotherapy and radiation.  I did not have surgery and did chemotherapy and radiation sequentially, with chemotherapy coming first.

You might ask why on earth would somebody choose to vary from recommended treatment.  Just like I now assume Crow did, I balanced the factors that are unique to me and made my decision.  Here are some of the things that came into play:

  • Although it graded malignant, my brain tumor is a slow growing.
  • The location of my tumor is favorable.
  • My tumor has a genetic anomaly that makes it more vulnerable and responsive to a particular chemotherapy and to radiation.
  • There were almost no outward signs of the presence of the brain tumor.
  • The tumor did not have defined edges making surgery a bit unpredictable.  Doctors like to see situations in which 95% or more of a tumor can be safely removed and the range of opinion went from 40% removal to 85% by the most aggressive surgeon.

After praying, getting opinions from brain tumor centers, consulting with other doctors I knew, talking with my family, praying some more, and being prayed for by others, I decided on my course of action.

Is the course of action I took the right one for everybody?  NO.  Is the course of action I took the right one for somebody with a similar fact pattern?  It is no more than another data point and is not determinative of anything.  Is the course of action I took the right one for me?  Still undetermined.  The road has not been easy, but, by God’s grace, I have a stable (and smaller) brain tumor today and will hit the five year make this summer.

I thank and praise the Lord and my savior for where I’ve been, where I am now, and where I will be in the future.