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.
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:
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.
One of the many things you hope for as a brain tumor survivor is reaching the point where your tumor is stable enough so that quarterly MRIs are no longer required. Today, I got that hoped for news. In my appointment immediately following today’s MRI (my neurologist does a preliminary read of the MRI, then goes over the results with you, all right after the scan) the doc told me that I would now only have an MRI once every 6 months. Fabulous news, right?
The weird thing is that I almost immediately began feeling uncomfortable. For nearly 5 years, I’ve had an MRI every 3 months (sometimes more frequently than that). Now, I suddenly have a new and more favorable regimen and am nervous. Upon reflection, it seems that the quarterly MRI had become a place of safety for me. Even though there was always a case of nerves before each scan, I knew that something was not likely to go seriously wrong. As a consequence, I had gotten to the point that headaches, stumbles, etc. did not freak me out as much. So, it seems to me that this new 6 month regimen may send me back to worrying more, which is quite ironic.
What was long dreamed of is now a reality and I almost want to go backwards. quarterly MRIs seem to be quite comfortable. I have received a great blessing from God, but in my pathetic humanness, I’m having trouble seeing the blessing because I have created a new worry. With God’s steady presence and help, I’m certain that I’ll get over this silliness quickly.
Last week, I went off on Sheryl Crow on Twitter with this tweet:
Beauty over Brains? Sheryl Crow doesn’t want her brain tumor removed because of scar.
This tweet was the result of a headline that caught my eye: Sheryl Crow: ”I have a brain tumour – but I don’t want it removed. That article included the following quote:
“I monitor it by getting MRI scans every six months to see if it’s growing at all. If it does then I can have radiation, although I don’t want to do that. I don’t really want to have it removed, either, because that would mean a craniotomy, which would mean another big scar.”
The way I interpreted that statement was that vanity was winning out over a a compelling medical case for the removal of a tumor. To base such an important medical decision on the nature of the scar left behind struck me as reckless and absurd. Moreover, given my passion for increasing brain tumor awareness, this seemed to be terribly misleading in light of the visibility enjoyed by Sheryl Crow. I resolved to go into much greater detail than allowed by 140 characters on Twitter.
Next week is here and I now believe that my reaction last week was largely unwarranted. The first reason is that the only source that I could find for this story was the Daily Mirror, a TABLOID. I have always doubted the credibility of tabloids and, when I realized that I was basing my tweet and my concerns on the reporting of a tabloid, I immediately felt like I was on shaky ground. However, knowing that a careful read of the Daily Mirror might reveal the truth behind the sensationalism.
While I don’t have the time at the moment to explain the details, I am pretty sure that I owe Sheryl Crow an apology (assuming that anything I say would matter to her at all. I will provide that detail in a subsequent post (Part 2)
For January, 2014:
If this winds up being the monthly average for all of 2014, we will reach 2,000,000,000 impacts and top 500,000 tweets! This is particularly amazing when you consider that 2013 had 970,000,000 impacts.
Big players in January include:
Thank you to all of these folks and all the other 40,000 participants. You are all rocking Twitter for brain tumor awareness.
Well the last campaign of January 2014 is in the books. So here are the numbers:
4th campaign in January:: Impacts: over 21.5M; Participants: over 1,300, and Tweets: about 1,800.
By giving a shout out to certain individuals, I never what to diminish the fact that every partipant plays a very important role in each campaign. The following are the ones who, in my opinion, deserve a shout out for this particular #BrainTumorThusday effort.
January totals to follow.
This article disturbs me: Brain Tumor Survivor Just Got an Obamacare Surprise. Why? Initially it seemed that Obamacare would be a big help for brain tumor patients by doing away with insurance denials based on preexisting conditions and reducing health care costs. Now, at least one of these perceived benefits has evaporated.
Obamacare is the popular nickname for the Affordable Care Act. Based on the name alone, it is logical to expect health care costs to decrease. However, this story reminds us that the only thing that has happened is that insurance coverage has been rendered available and affordable, not that the overall cost of health care has decreased.
Amanda Pratt, a survivor of a fist-sized, did see her monthly premiums go down $14, an annual savings of $168. But then, the other shoe dropped: her copay for a visit to a doctor increased $30 and her copay for prescriptions went up $20. Now, I do happen to know a bit about brain tumors and it is quite likely that she has at least one related medication that has to be filled monthly. That alone puts her in the red, totaling $240 a year. It’s not unreasonable to expect at least 2 visits to a doctor a year related to her brain tumor, which brings us up to $300. At least one MRI a year adds increased costs of $1,400 so that the new total is $1,700.
So, her “Obamacare surprise” is that she traded $1,700 to get a $168 premium reduction. And that’s not the whole negative impact on her, much more is described in the article. This makes me wonder how many more of the 612,000 Americans living with a brain tumor are facing the same thing. For that matter, how many more Americans living with cancer will get the same surprise?
Now I understand why so many people were opposed to Obamacare, Says Amanda: “The Affordable Care Act in general, I think, it’s a great idea, but the road to hell is paved in good intentions.”
My apologies for my dilatory presentation of of the chronicle of the first three brain tumor awareness endeavors for January and the new year, My preliminary assessment leads me to the supposition that we may be mired in the winter doldrums. My current prognostication is that the culmination of our efforts will lead to between 150 and 180 million impacts, together with the additional statistics for the remaining indices by which we measure success.
Although these projections show that January will not achieve the level of success in December, 2013 (217M impact), our combined efforts point to a strong potential to attain my aspiration of 2 billion impacts for 2014.
Toward that end, please keep up the good work!
The Shorty Awards are upon us, and I have begun campaigning for my personal brain tumor hero Josh Wilson a/k/a @JourneyJoshuas a/k/a #superJosh. The purpose of this post is to provide instructions on how to nominate Josh. A separate post, if I get around to it, will explain why I think #BrainTumorAwareness as his category.
How to Nominate Josh
Unfortunately, there are one or two wrinkles in the process. To start, click Nominate Josh. In most instances, you will be taken to a page that looks like this (you may have to scroll up):
Click the above image to enlarge it so you can see the details. There are a few things you need to confirm and and do clicking the red button..
The typical problem is that the pull down box on the upper left is set to #Activism or any one of a number of categories. Unless that box is set to “Other,” the nomination will be in another category. That’s not necessarily bad so long as you are able to nominate him in #BrainTumorActivism.
If you have problems, describe them in a comment below and I will try to help.
Words fail me in attempting to describe the success of the 2013 campaign for brain tumor awareness. The only thing to do is to let the numbers do the talking. Are you ready?
2013 Totals
Impacts (deliveries to people’s timelines): About 970 Million.
Participants: over 47,000.
Tweets: around 170,000.
That’s right, nearly a billion impressions. I truly have no idea which, if any, of these stats are actually relevant. All I know is that the numbers are huge and it is clear that the level of brain tumor awareness on Twitter has been increased.
A huge thank you to every single person participation #BrainTumorThusday campaign had a part in generating these huge numbers. There are a few people who have been valuable t, nevertheless there are a few “MVPs” who should get a special shout out.
People contributing over 1700 tweets in 2013 (the Work Horses), in descending order:
@pillionqueen People contributing over 10M Impression in 2013 (the Influence Masters), in descending order:
There is a new measurement category that may or may not be relevant. Some people are mentioned over and over again in tweets. I have no idea what it means, but it must mean something. In any event, here they are.
People mentioned over 2,800 times in 2013 (the Buzz Generators), in descending order:
@dawnfidlerEspecially noteworthy
Brain Tumor Awareness 