Upstate AnnMarie (who graciously gave me the "E") completely FLOORED me with a blog she wrote last week. I haven't had a chance to say a proper thank you or to let her know how much her words meant to me. I've been a bit of a blubbering fool in recent weeks for oh so many reasons and AnnMarie's words brought tears to my eyes.
Sidebar: I swear I likely went ten years without shedding a tear. Not that I have a heart of stone, but I was quite capable of swallowing the lump in my throat. Now? Not so much. Perhaps I'm on emotional overload or maybe when right brain overtook left brain, I stopped being so damn logical about everything.
Back to AM. WEGO Health is doing A Blog A Day for the month of April. I know I did this last year although I'm not sure I made it through the entire month. Prompts are provided for each day and last Thursday, the suggested topic was to share something learned from another health activist. When she chose me, I was so deeply touched and humbled, well...... I cried.
AnnMarie is a powerhouse. She has network to tap into whenever she wants to get something done. Every time I turn around, she's got another fundraiser underway and every one of them is a huge success. She's committed to changing the world. I love that. And I love everything about her. She is devilishly funny on her blog, Stupid Dumb Breast Cancer.
Plus, she has a great name. The post she wrote is not long. Unlike me, she can get her point out quickly. Please do click on that link to read what she had to say. We never verbalized the fact that we were the Hatfield/McCoy version of the Pink Party.
I LIKE AM. Lots. She reads this blog and I read hers. We knew were were on opposite sides of the fence but I am quite proud to say that we set those differences aside and realized there is far more that binds us together and those things are far more important than that which might divide us. Like religion and politics, discussing someone's charitable choices is off limits. We each have things that are important to us. It's not up to me to pass judgement on anyone's choices.
This is the way we get things done. Acceptance. Understanding. Realizing that just because our likes aren't in complete harmony, this should not preclude our ability to get along, to enjoy each other's company (virtual or real world) and it should not stop us from working together toward a common goal.
We are in this together. We are all fighting for the same thing. There are many paths to the top of the mountain. I like walking beside Upstate AM. I am proud to walk beside her. I like knowing she has my back and I hope she knows that I have hers, too.
A Postscript.....
AnnMarie just suffered an indescribable loss. The son of a dear friend of hers died last week. I don't know the details, I just know she is heartbroken and doing everything she can to support her friend. And I'm doing whatever I can to make sure AM knows that this time, I have her back.
Tuesday, April 30, 2013
Monday, April 29, 2013
THANK YOU PEGGY ORENSTEIN AND @NYTMag
May 5th: Note from author...
I just saw a piece written on Forbes.com which was posted on the same day this post appeared. Geoffrey Kabat asks "Can Setting A Deadline Put An End To Breast Cancer" ------
What just might be the most significant piece of writing appeared in the NY Times magazine on Sunday. It hit the internet last Wednesday and quickly was all over twitter and Facebook. At least that's the way it was in my circles.
I just saw a piece written on Forbes.com which was posted on the same day this post appeared. Geoffrey Kabat asks "Can Setting A Deadline Put An End To Breast Cancer" ------
What just might be the most significant piece of writing appeared in the NY Times magazine on Sunday. It hit the internet last Wednesday and quickly was all over twitter and Facebook. At least that's the way it was in my circles.
Peggy Orenstein wrote THE story for the NYT magazine. It was the cover story. I don't get the print version of the paper any longer but I will be ordering this issue. Our Feel-Good War on Breast Cancer appears in the April 28, 2013 magazine. First of all, tis refreshing to see Pink Mania in April. It's more refreshing to read what may be the clearest, easiest to understand explanation of the pink hype, DCIS, mammography debates and how we are still just approaching the starting blocks when it comes to treatment of metastatic disease.
Yes, it's a mandatory link click and yes, there will be a quiz.
Peggy did a radio interview, too. I listened to it in its entirety.
Peggy did a radio interview, too. I listened to it in its entirety.
Eloquent and pitch perfect. The writing and the speaking.
I wanted to make sure I said thank you and Peggy's response quite simply blew me away:
I wanted to make sure I said thank you and Peggy's response quite simply blew me away:
@chemobrainfog Thank you. You were one of the people whom I was thinking of as I wrote....— Peggy Orenstein (@peggyorenstein) April 25, 2013
@chemobrainfog No. Thank YOU for inspiration and reminding me that I have to stand up and do the hard thing.....— Peggy Orenstein (@peggyorenstein) April 25, 2013
Metastatic Breast Cancer Network provides an excellent synopsis of the article on their blog. Katherine O'Brien expands on what are some of the most important points in that article. Metastatic research is near and dear to my heart. It's been like that since the beginning so I was quite happy to see the write up. From their blog:
MBCN says:
Funding Research | We need more metastatic breast cancer research. Orenstein confirms what MBCN and METAvivor have said for years. Metastatic breast cancer research is appallingly underfunded:
I am troubled by
those who have bought into this notion that “saving lives” means saving the
lives of those who are already metastatic. Make no mistake. When they are left out of the conversation, when there is no SPECIFIC wording about what is being done directly for and on behalf of those who are already metastatic, they ARE under the bus.
When an organization boldly invites advocates to join them by saying, "It's time. This is serious. This is real. Are you with us?" and offers not one single shred of support for the most serious of all, I stand on behalf of my mother and my friends and everyone in the metastatic community.
I promised to be fearless, I promised to be a voice for those whose energy is better served by taking care of themselves. So I say:
"This IS serious. This IS real. We are dying at a rate of 110 plus each day. Are YOU with US?"
From reading the annual plan, it looks like those with the most dire needs have been totally, completely and wholly IGNORED. I hope those who will be in Washington DC as the leadership summit commences this weekend will demand answers. I hope they will ask those on the board to take action so that everyone is represented. When we advocate for a particular population, we don't walk away from the hard stuff. The best advocates, the most tenacious and the most respected advocates don't turn their backs on any in their communities. They advocate for ALL. ALL isn't what I see in this plan. The omission is glaring.
MBCN says:
Funding Research | We need more metastatic breast cancer research. Orenstein confirms what MBCN and METAvivor have said for years. Metastatic breast cancer research is appallingly underfunded:
(in response to this portion of the article)
According to a Fortune magazine analysis, only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis; out of more than $2.2 billion dollars raised over the last six years, Komen has dedicated $79 million to such research — a lot of money, to be sure, but a mere 3.6 percent of its total budget during that period.
According to a Fortune magazine analysis, only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis; out of more than $2.2 billion dollars raised over the last six years, Komen has dedicated $79 million to such research — a lot of money, to be sure, but a mere 3.6 percent of its total budget during that period.
There’s
also the intertwined issue of funding research for the prevention of metastatic breast cancer vs. treatments that will extend the lives of those currently living
with the disease:
“A
lot of people are under the notion that metastatic work is a waste of time,”
said Danny Welch, chairman of the department of cancer biology at the
University of Kansas Cancer Center, “because all we have to do is prevent
cancer in the first place. The problem is, we still don’t even know what causes
cancer. I’d prefer to prevent it completely too, but to put it crassly, that’s
throwing a bunch of people under the bus right now.”
While I was in Washington
at the AACR meeting I had the opportunity to speak to a researcher who is
highly accomplished and works in a world-renowned lab. We talked about DCIS and the importance for
research to establish clear and proven methods to determine which DCIS lesions
will become invasive. We discussed
research to halt disease progression of invasive cancers, in simple terms, how
do we stop those diagnosed with early stage cancers from joining the Metastatic
Club… like my mom did, likely after 25 years and like Jody just shared on
Friday, definitely after 15 years.
Finally, we talked about metastatic disease and the desperate need for
research that stop the disease from progressing any further. How do we prevent death?
On the surface, each of
these three scenarios seeks to answer the same question. What causes progression and what can be done to interrupt the process? Although there may be a crossover in the
research of these three very distinct areas, for now research specific to prevention
of metastasis IN NO WAY helps those who are already living with metastatic
disease. As Danny Welch who is a staunch supporter
in the field of metastatic research notes, people are being thrown under the bus.
Sticking with the bus analogy and using the numbers that are available, there are in excess of 150,000 patients already under the bus. They are the ones with metastatic disease. There are approximately 2.7 million breast cancer survivors in the US. Removing the 150K already living with metastatic disease from those 2.7 million, if current estimates are accurate, in excess of 750K “survivors” will be thrown under the bus.
Sticking with the bus analogy and using the numbers that are available, there are in excess of 150,000 patients already under the bus. They are the ones with metastatic disease. There are approximately 2.7 million breast cancer survivors in the US. Removing the 150K already living with metastatic disease from those 2.7 million, if current estimates are accurate, in excess of 750K “survivors” will be thrown under the bus.
Yes, it is important to
learn what will send those 750k from walking in the bus lane to being thrown under
the bus but WHO is talking about those who are already under the bus? I have taken offense with this in the
past. I was a bit subdued in my
irritation and I was called out on that, “You are being too nice.” It was Lori, my friend and our blog buddy who
hurled those words at me. I told her I
didn’t feel I had the right to be quite as indignant as she might be. After all, I explained, I am not a patient
with metastatic disease.
While that is still true,
I am now the daughter of a patient with metastatic disease and I am surrounded
by a number of very good friends who are metastatic patients. There has been more than a slight shift in
my irritation.
I believe we must be respectful of all organizations. Everything is not for everyone. There are many gaps and there are plenty of niches that need to be filled. There are organizations that support the underserved. There are others that fill the needs of those of us beyond active treatment who are still learning how to navigate what can, at times be traumatizing. Many organizations support research. Few of those are devoted strictly to the study of metastatic disease. I can suggest we encourage those funding broad research to consider redistribution so more money is funneled into metastatic research.
I believe we must be respectful of all organizations. Everything is not for everyone. There are many gaps and there are plenty of niches that need to be filled. There are organizations that support the underserved. There are others that fill the needs of those of us beyond active treatment who are still learning how to navigate what can, at times be traumatizing. Many organizations support research. Few of those are devoted strictly to the study of metastatic disease. I can suggest we encourage those funding broad research to consider redistribution so more money is funneled into metastatic research.
What I cannot accept is an
advocacy organization that is an umbrella for ALL breast cancer to deliberately
omit metastatic patients from their conversation. The National Breast Cancer Coalition is doing
just that and frankly, I am disappointed. I supported NBCC and
Deadline 2020. I believe in many of
their programs. It was their effort that
paved a path to my seat at the Department of Defense grant review panel this
past October. Project Lead has given
many the education and the tools to be better advocates.
On January 4 of this year,
I wrote a blog post in response to an email from NBCC seeking membership input
for the 2013 priorities. Ironically,
that very same day was the day I was with my mom at MSKCC. Ironically, that very same day, we were given
the results. Sadly and ironically, that
was the day I learned my mom is now a metastatic patient. I asked that the National Breast Cancer
Coalition include ALL breast cancer in their “priorities for 2013.” After seeing the priorities in print, I'm unhappy (understatement... massive one at that) and I'm feeling a bit like they are trying to spin something using carefully crafted phrases.
There is absolutely no mention of metastatic patients in their priorities. NONE. When this has been questioned (by others), they are consistently told about “saving lives through the prevention of metastasis.” The inference is that stopping metastasis in the first place will somehow trickle into stopping the progression of disease that has ALREADY metastasized. THAT is called “funny science.” Every brilliant researcher I’ve asked has made it clear. Metastasis MUST be studied on its own. PER.I.OD.
There is absolutely no mention of metastatic patients in their priorities. NONE. When this has been questioned (by others), they are consistently told about “saving lives through the prevention of metastasis.” The inference is that stopping metastasis in the first place will somehow trickle into stopping the progression of disease that has ALREADY metastasized. THAT is called “funny science.” Every brilliant researcher I’ve asked has made it clear. Metastasis MUST be studied on its own. PER.I.OD.
When an organization boldly invites advocates to join them by saying, "It's time. This is serious. This is real. Are you with us?" and offers not one single shred of support for the most serious of all, I stand on behalf of my mother and my friends and everyone in the metastatic community.
I promised to be fearless, I promised to be a voice for those whose energy is better served by taking care of themselves. So I say:
"This IS serious. This IS real. We are dying at a rate of 110 plus each day. Are YOU with US?"
From reading the annual plan, it looks like those with the most dire needs have been totally, completely and wholly IGNORED. I hope those who will be in Washington DC as the leadership summit commences this weekend will demand answers. I hope they will ask those on the board to take action so that everyone is represented. When we advocate for a particular population, we don't walk away from the hard stuff. The best advocates, the most tenacious and the most respected advocates don't turn their backs on any in their communities. They advocate for ALL. ALL isn't what I see in this plan. The omission is glaring.
•
First Pilot Artemis Project®: The
topic chosen was a five year development plan for a breast cancer preventive
vaccine, because of the potential impact on breast cancer and the progress made
in the field of immunology. A research plan is in place, teams have been
identified and the plan is being implemented. This vaccine project will serve
as the model for other catalytic projects.
•
Future catalytic projects. Within
the Artemis Project®, future projects will be identified through Summits and
other collaborative efforts. Initial areas of focus planned for 2013 and beyond
include the role of viruses in the initiation, development, or spread of
breast cancer; the role of inflammation in breast cancer; targeting the
immune system to prevent breast cancer
development or metastasis; the role of lifestyle and other external
exposures in initiation and progression of breast cancer; and identifying
the windows when women are most vulnerable to breast cancer development and metastasis.
• Refine existing research infrastructure. NBCC will form a collaboration to identify problems that
impede progress within the research infrastructure and design solutions to move
the existing systems to focus on making progress toward the Breast Cancer
Deadline 2020® goal. This project will include an initial workshop to review
existing models of effective resource allocation that may be relevant and
identify the leadership and processes necessary to achieve success. Plans will
be refined, monitored and adjusted through 2020.
PS...... Peggy shares a little about Bridget in her article. Her blog is beautiful. And haunting. She also shares some of Ann's story. Ann's award winning blog is full of snark.
Friday, April 26, 2013
DISTRACTIONS OR OPPORTUNITIES ??
I've been on point all week. It's been about chemobrain! I love this cartoon and it's apropos for me to end the week having kept to the theme. John Atkins has some very funny cartoons. Quite talented and worth a peek.
Cartoons by John Atkins can be found at wronghands1.wordpress.com. This particular little sketch works in tandem with the infographic I posted earlier this week. I think I can safely say the commotion in the pre Social Media world created an equal amount of distraction.... it just wasn't all happening in such an instantaneous and simultaneous fashion. Back in the vintage days, one had to physically MOVE from one area to another. Now, it's all on this screen.... usually with every one of those tabs (and possibly a few more) open in a browser window. It's just lots of clicking.
I'm not going to get all sappy now, but the distractions have turned into opportunities. The distractions have provided me with real relationships that would NEVER have existed if not for one link leading to the next. I owe a debt of gratitude to the distractions....... My life, in its present form, a form with which I am quite fulfilled is solely, completely and fully the result of distractions. And the fruit of those distractions......
Cartoons by John Atkins can be found at wronghands1.wordpress.com. This particular little sketch works in tandem with the infographic I posted earlier this week. I think I can safely say the commotion in the pre Social Media world created an equal amount of distraction.... it just wasn't all happening in such an instantaneous and simultaneous fashion. Back in the vintage days, one had to physically MOVE from one area to another. Now, it's all on this screen.... usually with every one of those tabs (and possibly a few more) open in a browser window. It's just lots of clicking.
I'm not going to get all sappy now, but the distractions have turned into opportunities. The distractions have provided me with real relationships that would NEVER have existed if not for one link leading to the next. I owe a debt of gratitude to the distractions....... My life, in its present form, a form with which I am quite fulfilled is solely, completely and fully the result of distractions. And the fruit of those distractions......
Thursday, April 25, 2013
GANZ-UCLA-CHEMOBRAIN STUDY STILL OPEN??
Since I've been on a chemobrain campaign this week, it dawned on me that Army of Women is trying to help fill this study.
LADIES... (the study is limited to women) Riddle me this....
HOW is this study not filled??? It's Patricia Ganz. It's UCLA. It's where all the good stuff is happening.
About 60 women will be participating??? And the study is still open? The Army of Women email is months old (I think, I really can't trust my brain).
Geez, I know the traffic in LA sucks, but once a week for five weeks to participate in a study designed by Superstar Ganz?
Read the criteria.... think about it... share with anyone in the LA area.
Remember: If you are able, you should..... We're in this together. Together we will make progress.
Don't make me have to recruit a posse from NY.
LADIES... (the study is limited to women) Riddle me this....
HOW is this study not filled??? It's Patricia Ganz. It's UCLA. It's where all the good stuff is happening.
About 60 women will be participating??? And the study is still open? The Army of Women email is months old (I think, I really can't trust my brain).
Geez, I know the traffic in LA sucks, but once a week for five weeks to participate in a study designed by Superstar Ganz?
Read the criteria.... think about it... share with anyone in the LA area.
Remember: If you are able, you should..... We're in this together. Together we will make progress.
Don't make me have to recruit a posse from NY.
CURRENT PROJECTS
Project Title Breast Cancer Cognitive Rehabilitation Study
Researcher Patricia Ganz, MD, UCLA Jonsson Comprehensive Cancer Center, and Linda Ercoli, PhD, Steven Castellon, PhD, and Andrew Luechter, MD, UCLA Semel Institute
Study Summary The purpose of this study is to evaluate the effectiveness of a rehabilitation group intervention program for breast cancer survivors who are experiencing memory loss and concentration problems associated with cancer treatments. About 60 women will take part in the study.
Who Can Participate? You can sign up for the Breast Cancer Cognitive Rehabilitation Study if you meet ALL of these MAIN criteria:
• You are a woman between the ages of 21-65.
• You have been diagnosed with Stage I, II, or III breast cancer.
• You were diagnosed with breast cancer between 18 months and 5 years ago.
• You have completed your primary treatments (surgery and, if needed, radiation and/or chemotherapy), and are currently disease free (it is OK if you are on endocrine therapy, such as tamoxifen or an aromatase inhibitor).
• You do not have a personal history of any other cancer besides breast cancer.
• You are experiencing cognitive problems (for example, memory loss and concentration problems) that interfere with your everyday activities.
• You are able to read and write English.
• You live in the Los Angeles area and are willing and able to drive to UCLA to attend 5 weekly group sessions and participate in a pre-visit and two follow-up visits.
After you RSVP, the research team will contact you to ask additional questions to be sure that the study is a good fit for you.
• You are a woman between the ages of 21-65.
• You have been diagnosed with Stage I, II, or III breast cancer.
• You were diagnosed with breast cancer between 18 months and 5 years ago.
• You have completed your primary treatments (surgery and, if needed, radiation and/or chemotherapy), and are currently disease free (it is OK if you are on endocrine therapy, such as tamoxifen or an aromatase inhibitor).
• You do not have a personal history of any other cancer besides breast cancer.
• You are experiencing cognitive problems (for example, memory loss and concentration problems) that interfere with your everyday activities.
• You are able to read and write English.
• You live in the Los Angeles area and are willing and able to drive to UCLA to attend 5 weekly group sessions and participate in a pre-visit and two follow-up visits.
After you RSVP, the research team will contact you to ask additional questions to be sure that the study is a good fit for you.
What Does Participation Involve? If you sign up for the Breast Cancer Cognitive Rehabilitation Study, you will be contacted by the research team to confirm that you are eligible for the study. If you choose to participate in the study, you will be asked to do the following:
• Go to UCLA for an initial baseline visit that will last about three hours.
• Go to UCLA once a week for a 5-week group intervention program. These visits will last 2 hours each.
• Go to UCLA for follow-up study visits a week or two after the group intervention ends, and again 2 months later. These visits will take approximately 2.5 hours each.
• Complete a survey questionnaire at your home before your baseline and follow-up visits.
• Take part in a procedure called quantitative electroencephalography (QEEG). An EEG is a test that measures the electrical activity of the brain. The purpose of the QEEG is to determine whether or not the research team can detect EEG patterns associated with cognitive complaints after breast cancer. This procedure will be conducted at 3 time points in the study.
In this study half of the women will be assigned by chance (like the flip of a coin) to participate in the rehabilitation group intervention program and half will be assigned to a wait-list control group. This type of randomized study is necessary to scientifically prove that something is effective. The wait-list control group will also be able to participate in the group intervention in the future, but not until after all the visits have been completed.
• Go to UCLA for an initial baseline visit that will last about three hours.
• Go to UCLA once a week for a 5-week group intervention program. These visits will last 2 hours each.
• Go to UCLA for follow-up study visits a week or two after the group intervention ends, and again 2 months later. These visits will take approximately 2.5 hours each.
• Complete a survey questionnaire at your home before your baseline and follow-up visits.
• Take part in a procedure called quantitative electroencephalography (QEEG). An EEG is a test that measures the electrical activity of the brain. The purpose of the QEEG is to determine whether or not the research team can detect EEG patterns associated with cognitive complaints after breast cancer. This procedure will be conducted at 3 time points in the study.
In this study half of the women will be assigned by chance (like the flip of a coin) to participate in the rehabilitation group intervention program and half will be assigned to a wait-list control group. This type of randomized study is necessary to scientifically prove that something is effective. The wait-list control group will also be able to participate in the group intervention in the future, but not until after all the visits have been completed.
Where? University of California, Los Angeles
Wednesday, April 24, 2013
WHAT DO SOCIAL MEDIA AND CHEMOTHERAPY HAVE IN COMMON ?
Take a look at this infographic. I see myself in more than one place on this chart. You, too?
Two days ago, I think I may have said that Dr. Ganz had "an ace in the hole" as she was approaching a microphone to challenge the findings of a research study. Today, it's fair to say I am adding insult to injury by virtue of my social media activity.
I admit to distracted brain, I've been quick to blame chemo but... I may need a little discipline to correct some of my own problems. It's one more block to add to the foundation I've been building this week. I am going to study this poster to see how I can build a more productive day. Interesting poster and more than likely adding to my ongoing distracted brain.
More interesting? According to this chart, a study at UCLA was done on this phenomenon. With tongue firmly inserted in cheek (or not), I might offer a suggestion. Maybe it would be a good idea to cross reference the research with Patti Ganz and company? I see lots of words that look mighty familiar!
Filed at Infographicsposters.com in Social Media Infographics
Two days ago, I think I may have said that Dr. Ganz had "an ace in the hole" as she was approaching a microphone to challenge the findings of a research study. Today, it's fair to say I am adding insult to injury by virtue of my social media activity.
I admit to distracted brain, I've been quick to blame chemo but... I may need a little discipline to correct some of my own problems. It's one more block to add to the foundation I've been building this week. I am going to study this poster to see how I can build a more productive day. Interesting poster and more than likely adding to my ongoing distracted brain.
More interesting? According to this chart, a study at UCLA was done on this phenomenon. With tongue firmly inserted in cheek (or not), I might offer a suggestion. Maybe it would be a good idea to cross reference the research with Patti Ganz and company? I see lots of words that look mighty familiar!
Tuesday, April 23, 2013
HOW TO TRAIN A BRAIN WITHOUT REALLY TRYING .....
Did you read yesterday's post? The One Where We Get To Say "I Told You" is a must read for some of this to make sense. I'm going with a building block theme this week.
Let's review the three important foundation blocks upon which todays post is perched.
She has a colleague in NYC who agreed to give me a "sample session." I met with Catherine Boyer at her office and I did NOT do a sample session. Instead, we discussed the method of intervention (I'm GETTING TO IT!) and I set up a training schedule with Catherine. Very important: I paid for my sessions. No "enticement" and no bias. My plan was to show up and see what might happen. I was intrigued and quite curious. I was also a milli-second from pleading with my doctor for a prescription for nuvigil and I was armed for the fight with my insurance company to cover the cost of the medication.
Jean's study was designed using patient reported assessments to attempt an intervention by providing the brain with a means to reorganize itself. Take that statement in and go read those three key points one more time. Do you see every one of them in one sentence? Yes, You Do!
The study used a neurofeedback (NFB) system. The beauty of this system and the method of training appealed to me. Traditional feedback requires active participation from the person with the things taped to their head. It also requires a highly trained professional to identify the specific area of the brain where there is a problem. Once identified, the brain is nudged to move in a different direction. Think of it as a detour except there is no clear path and if the coaxing isn't precise there might (emphasis on might) be a new path which is worse than the original path. Not making sense? Not necessarily important to this conversation and here's why.
I have enough problems in my head (I can line up many, MANY people who will vouch for that). I think I would be a bit fearful of allowing someone to decide where they feel the problem lies and which path is the best way out. The NFB that was utilized in this study does not require any assessment of specific problem areas. Instead, it relies on the brain's own ability to reorganize itself. It looks at the brain as a whole rather than targeting any one area. It does not force or suggest or nudge or coax. The NFB simply signals the brain. "Hey, you're getting distracted" or "You're about to nod off" and then, the brain takes the information and decides for itself if it is going to transition to another place or stay right where it is.
Okay, once again with the grossly oversimplification of a highly sophisticated system but this process is just that: Simple. I am seated in a comfy chair, feet up. Two sensors are placed on my scalp and two others are on my ears. Music begins to play and images are on a large computer monitor. What's my role in this whole procedure? Consciously? Nothing. I can zone out. Or concentrate on the music. I can fall asleep. When the sensors pick up that my brain is about to exit, stage left, there is a brief interruption in the music. My brain decides what to do. I have no clue what decisions are being made and no choice is "suggested" by the system. I've been awake for the entire time, I've fallen asleep other times. Some times I bounce between semi-asleep and VERY relaxed. After 33 minutes, the sensors are removed and I skip happily to my car.
Although the results in this study are promising, there were only 23 participants. Please DO go back and click the Cleveland.com link to read the details. Jean shares her hope that these results are impressive enough to design a study that incorporates a control group, a larger and more diverse patient population, pre and post NFB MRI, the use of "sham" (fake) NFB in a double blind setting (where neither the technician or the patient know if the NFB is real or not). The company that developed this system may be developing a program that would allow for such studies.
It starts with an idea. Jean had an idea. It may work. What have I noticed after ten weeks? I am still suffering from severe distracted brain. I'm all over the place. I'm beginning to wonder if I'm taking on a bit more than I should and that is causing some of the distraction. To be fair, I must say the staying on task is still a problem.
HowEVER.... some of the things I did notice.... and it wasn't until well afterward that I looked back and realized, "whoa.... what the heck just happened?"
I was at the hospital waiting for a meeting to start. I was seated in the lobby at a particularly busy time of day. I opened my iPad and began to answer email. Attached to one email was a scientific publication that I started to read. It was fairly complex and I was more than halfway through the thing before I looked up and saw the commotion going on within eight feet of where I was seated. Two women alternately arguing and then getting on and off a cell phone. They were seated within five feet of my chair. Off to the side, a group of three people, one of whom was very upset and being consoled by the other two. And I tuned ALL of this out as I was reading. I recall glancing up at the commotion and going right back to the paper. Suddenly, I stopped and took a good look around and then glanced back down at the iPad with a bit of a grin on my face. What was THAT all about??? I need total silence and no view of the outside world to concentrate.
That whole color code post it note organization thing I blogged about...... That was after a few sessions.
One evening, we were at a hockey game. I'll spare the details except to say there was a commotion on the ice, a commotion in the stands and a fairly complicated math issue on the time clock. And penalties and a goal scored and I blurted out the math without thinking AND I questioned something else that I KNOW was logical. Considering my numbering system only works in increments of 100, the fact that I was able to tick the time off the clock by mentally doing a quick subtraction of two numbers from 60? That was yet another, "WAIT, what just happened?" moment.
I still feel somewhat overwhelmed but I do feel less foggy. I did the same assessments that Jean administered in the study and she did provide me with the 7 week comparisons. I've improved in all areas. I'm still training with Catherine and hopefully, I will continue to see improvement.
This feedback certainly appears to have tremendous potential to be restorative, to help the brain find new pathways. It's unknown if these results will hold up over time or if "booster sessions" might be necessary. There are more questions than there are answers but the great thing? There ARE questions and there is something that may provide at least some of the answers.
Considering the conversation last night during our #BCSM chat about finding ways to involve patients in helping to frame the research, I'm sticking with Jean. This is absolutely worthy of a long hard look with all the proper controls in place. I hope to help make that happen.
Let's review the three important foundation blocks upon which todays post is perched.
- Neuroplasticity. The Omega workshop which will be held in June has a quick and excellent description which always works for me. Miss Wordy. Don't want to click? OK.... The high points: For a long time, scientists believed that our brains stopped growing by the time we are 21. (There's a definite wise crack in there which I will ignore.) Recent discoveries have shown that our brains continue to evolve and neuroplasticity refers to the brain's ability to reorganize itself by forming new neural (nerve cell) connections. MedicineNet.com does a fine job of outlining the process with specific reference to injured brains.
- Listen To Us! The study published last week which I wrote about yesterday adds to the body of evidence to let the medical community know, "Hey, it's okay to listen to us!" Dr. Ganz designed a study that provides compelling evidence. My Rockstar "Bud," Idelle Davidson, did a terrific job of outlining the study on her blog. The take away, Stay With Me Here: Patient Reported Outcomes surely appear to be reliable measures when assessing chemobrain.
- Biological Understanding is NOT Necessary to Attempt Intervention. That statement stands on its own merit. Our chemobrain issues may be addressed without a complete understanding of the hows and the whys. That is HUGE.
She has a colleague in NYC who agreed to give me a "sample session." I met with Catherine Boyer at her office and I did NOT do a sample session. Instead, we discussed the method of intervention (I'm GETTING TO IT!) and I set up a training schedule with Catherine. Very important: I paid for my sessions. No "enticement" and no bias. My plan was to show up and see what might happen. I was intrigued and quite curious. I was also a milli-second from pleading with my doctor for a prescription for nuvigil and I was armed for the fight with my insurance company to cover the cost of the medication.
Jean's study was designed using patient reported assessments to attempt an intervention by providing the brain with a means to reorganize itself. Take that statement in and go read those three key points one more time. Do you see every one of them in one sentence? Yes, You Do!
The study used a neurofeedback (NFB) system. The beauty of this system and the method of training appealed to me. Traditional feedback requires active participation from the person with the things taped to their head. It also requires a highly trained professional to identify the specific area of the brain where there is a problem. Once identified, the brain is nudged to move in a different direction. Think of it as a detour except there is no clear path and if the coaxing isn't precise there might (emphasis on might) be a new path which is worse than the original path. Not making sense? Not necessarily important to this conversation and here's why.
I have enough problems in my head (I can line up many, MANY people who will vouch for that). I think I would be a bit fearful of allowing someone to decide where they feel the problem lies and which path is the best way out. The NFB that was utilized in this study does not require any assessment of specific problem areas. Instead, it relies on the brain's own ability to reorganize itself. It looks at the brain as a whole rather than targeting any one area. It does not force or suggest or nudge or coax. The NFB simply signals the brain. "Hey, you're getting distracted" or "You're about to nod off" and then, the brain takes the information and decides for itself if it is going to transition to another place or stay right where it is.
Okay, once again with the grossly oversimplification of a highly sophisticated system but this process is just that: Simple. I am seated in a comfy chair, feet up. Two sensors are placed on my scalp and two others are on my ears. Music begins to play and images are on a large computer monitor. What's my role in this whole procedure? Consciously? Nothing. I can zone out. Or concentrate on the music. I can fall asleep. When the sensors pick up that my brain is about to exit, stage left, there is a brief interruption in the music. My brain decides what to do. I have no clue what decisions are being made and no choice is "suggested" by the system. I've been awake for the entire time, I've fallen asleep other times. Some times I bounce between semi-asleep and VERY relaxed. After 33 minutes, the sensors are removed and I skip happily to my car.
Although the results in this study are promising, there were only 23 participants. Please DO go back and click the Cleveland.com link to read the details. Jean shares her hope that these results are impressive enough to design a study that incorporates a control group, a larger and more diverse patient population, pre and post NFB MRI, the use of "sham" (fake) NFB in a double blind setting (where neither the technician or the patient know if the NFB is real or not). The company that developed this system may be developing a program that would allow for such studies.
It starts with an idea. Jean had an idea. It may work. What have I noticed after ten weeks? I am still suffering from severe distracted brain. I'm all over the place. I'm beginning to wonder if I'm taking on a bit more than I should and that is causing some of the distraction. To be fair, I must say the staying on task is still a problem.
HowEVER.... some of the things I did notice.... and it wasn't until well afterward that I looked back and realized, "whoa.... what the heck just happened?"
I was at the hospital waiting for a meeting to start. I was seated in the lobby at a particularly busy time of day. I opened my iPad and began to answer email. Attached to one email was a scientific publication that I started to read. It was fairly complex and I was more than halfway through the thing before I looked up and saw the commotion going on within eight feet of where I was seated. Two women alternately arguing and then getting on and off a cell phone. They were seated within five feet of my chair. Off to the side, a group of three people, one of whom was very upset and being consoled by the other two. And I tuned ALL of this out as I was reading. I recall glancing up at the commotion and going right back to the paper. Suddenly, I stopped and took a good look around and then glanced back down at the iPad with a bit of a grin on my face. What was THAT all about??? I need total silence and no view of the outside world to concentrate.
That whole color code post it note organization thing I blogged about...... That was after a few sessions.
One evening, we were at a hockey game. I'll spare the details except to say there was a commotion on the ice, a commotion in the stands and a fairly complicated math issue on the time clock. And penalties and a goal scored and I blurted out the math without thinking AND I questioned something else that I KNOW was logical. Considering my numbering system only works in increments of 100, the fact that I was able to tick the time off the clock by mentally doing a quick subtraction of two numbers from 60? That was yet another, "WAIT, what just happened?" moment.
I still feel somewhat overwhelmed but I do feel less foggy. I did the same assessments that Jean administered in the study and she did provide me with the 7 week comparisons. I've improved in all areas. I'm still training with Catherine and hopefully, I will continue to see improvement.
This feedback certainly appears to have tremendous potential to be restorative, to help the brain find new pathways. It's unknown if these results will hold up over time or if "booster sessions" might be necessary. There are more questions than there are answers but the great thing? There ARE questions and there is something that may provide at least some of the answers.
Considering the conversation last night during our #BCSM chat about finding ways to involve patients in helping to frame the research, I'm sticking with Jean. This is absolutely worthy of a long hard look with all the proper controls in place. I hope to help make that happen.
Monday, April 22, 2013
THE ONE WHERE WE GET TO SAY "I TOLD YOU"
Everything makes sense. In December when I was on a rant over that dismissive chemobrain presentation in San Antonio....... and then, I expressed my delight to see Dr. Ganz waiting at the microphone to ask those questions..... yes, it all makes perfect sense.
There is a very important study in the current issue of The Journal of the National Cancer Institute. Advance online access to the publication was available last week. I have a copy of the publication and, for that matter, the accompanying editorial. The thing is..... it was submitted on September 26, 2012. The lead researcher? Dr. "Patti" Ganz. She had already completed the study, analyzed the results, prepared the article and submitted the manuscript. This, I believe, is what might be referred to as "an ace in the hole."
Science Daily has an excellent synopsis of the study in an article titled Scientific Basis for Cognitive Complaints of Breast Cancer Patients. The press release from UCLA can be found here. In addition to the study results, there is an accompanying editorial written by Christina Meyers who wrote a book that, yes, I do own. As long as I'm on the topic of books, it's noteworthy that Dan Silverman is a co-author of the paper. He is also the co-author (with my dear friend, Idelle Davidson who wrote a guest post for this blog) of Your Brain After Chemo which has become a bible to so many of us.
IF anyone is still with me after I submerged myself into click link hell, I'm back and now, it's time for the results. Blogger: Dim The Lights and Let's Go!
Neuropsychological testing was done in a group of very stringently selected women. I subjected my own brain to that battery of tests before I began writing this blog. They are nutty and apparently, not quite sensitive enough to pick up the subtleties that may be troubling many of us. Unless, of course, you know what you are doing and you know what to look for and you know how to make adjustments and in the case of Dr. Ganz, that would be check, check AND check. In addition to the testing, the women were also asked to complete surveys to report how they perceived certain specific issues like memory and executive function. A "matched" group of healthy women were recruited to undergo the same neuropsych testing and to complete the same surveys. The healthy women were similar in age, ethnicity, marital status, BMI and depressive symptoms.
I've just completely oversimplified what is a quite complex testing regiment but my purpose for sharing this story isn't to regurgitate the scientific intricacies. I'll leave that to Science Daily (and hopefully, Idelle). What strikes me? Dr. Ganz' study shows that we ain't just complaining for the sake of complaining. The things that are wreaking havoc in our minds are now being accounted for on the self assessments AND these same issues are actually showing up as real deficiencies on those over the top, brain dripping out of my ear tests.
In really simple terms? Patient complaints, more technically referred to as PAOFI (Patient's Assessment of Own Functioning Inventory) would appear to be reliable indicators. Simpler still? Believe the patient. We are not making this stuff up! To the credit of Dr. Ganz, she has been extolling the importance of patient reported issues for quite some time. She now has science to support what has long been suspected by a number of researchers who are well versed in the world of chemobrain. Self-reporting may be the best way of obtaining an accurate assessment of the problems we are experiencing.
Christina Meyers makes a number of brilliant, albeit disturbing observations in her editorial. She notes the problem, while frequently subtle, occurs in many patients before, during and long after treatment. She believes the problem may be understated (I concur and have been saying that for a long time). Dr. Meyers also notes that those tests are done in a distraction-free, one on one setting which in NO WAY resembles our real worlds. She also notes that mental exercises marketed to improve cognitive function may not be translating into our real worlds. We may be getting better at the tests but it may NOT be helping the real world issues.
Perhaps her most important observation? While research is necessary and important to untangle the mess left behind so that our brains might be restored to something resembling their pre-cancer abilities, she states that "a full understanding of the biology.... is not necessary for effective interventions to be employed."
Pay close attention to that phrase in quotation marks. Pay very very VERY close attention. Take a little time to understand about brain neuroplasticity. There is a very easy to understand explanation on the website for Omega Institute where they are having a weekend seminar in June. I love Rhinebeck and I think I just filled my calendar for June 21, 22, 23.
And, my calendar is filled for tomorrow, too. Plan to be here for a conversation about neuroplasticity of the brain and some thoughts about interventions that may be a bit more effective than the old, "put your keys in the same place every day."
Stay
Tuned
There is a very important study in the current issue of The Journal of the National Cancer Institute. Advance online access to the publication was available last week. I have a copy of the publication and, for that matter, the accompanying editorial. The thing is..... it was submitted on September 26, 2012. The lead researcher? Dr. "Patti" Ganz. She had already completed the study, analyzed the results, prepared the article and submitted the manuscript. This, I believe, is what might be referred to as "an ace in the hole."
Science Daily has an excellent synopsis of the study in an article titled Scientific Basis for Cognitive Complaints of Breast Cancer Patients. The press release from UCLA can be found here. In addition to the study results, there is an accompanying editorial written by Christina Meyers who wrote a book that, yes, I do own. As long as I'm on the topic of books, it's noteworthy that Dan Silverman is a co-author of the paper. He is also the co-author (with my dear friend, Idelle Davidson who wrote a guest post for this blog) of Your Brain After Chemo which has become a bible to so many of us.
IF anyone is still with me after I submerged myself into click link hell, I'm back and now, it's time for the results. Blogger: Dim The Lights and Let's Go!
Neuropsychological testing was done in a group of very stringently selected women. I subjected my own brain to that battery of tests before I began writing this blog. They are nutty and apparently, not quite sensitive enough to pick up the subtleties that may be troubling many of us. Unless, of course, you know what you are doing and you know what to look for and you know how to make adjustments and in the case of Dr. Ganz, that would be check, check AND check. In addition to the testing, the women were also asked to complete surveys to report how they perceived certain specific issues like memory and executive function. A "matched" group of healthy women were recruited to undergo the same neuropsych testing and to complete the same surveys. The healthy women were similar in age, ethnicity, marital status, BMI and depressive symptoms.
I've just completely oversimplified what is a quite complex testing regiment but my purpose for sharing this story isn't to regurgitate the scientific intricacies. I'll leave that to Science Daily (and hopefully, Idelle). What strikes me? Dr. Ganz' study shows that we ain't just complaining for the sake of complaining. The things that are wreaking havoc in our minds are now being accounted for on the self assessments AND these same issues are actually showing up as real deficiencies on those over the top, brain dripping out of my ear tests.
In really simple terms? Patient complaints, more technically referred to as PAOFI (Patient's Assessment of Own Functioning Inventory) would appear to be reliable indicators. Simpler still? Believe the patient. We are not making this stuff up! To the credit of Dr. Ganz, she has been extolling the importance of patient reported issues for quite some time. She now has science to support what has long been suspected by a number of researchers who are well versed in the world of chemobrain. Self-reporting may be the best way of obtaining an accurate assessment of the problems we are experiencing.
Christina Meyers makes a number of brilliant, albeit disturbing observations in her editorial. She notes the problem, while frequently subtle, occurs in many patients before, during and long after treatment. She believes the problem may be understated (I concur and have been saying that for a long time). Dr. Meyers also notes that those tests are done in a distraction-free, one on one setting which in NO WAY resembles our real worlds. She also notes that mental exercises marketed to improve cognitive function may not be translating into our real worlds. We may be getting better at the tests but it may NOT be helping the real world issues.
Perhaps her most important observation? While research is necessary and important to untangle the mess left behind so that our brains might be restored to something resembling their pre-cancer abilities, she states that "a full understanding of the biology.... is not necessary for effective interventions to be employed."
Pay close attention to that phrase in quotation marks. Pay very very VERY close attention. Take a little time to understand about brain neuroplasticity. There is a very easy to understand explanation on the website for Omega Institute where they are having a weekend seminar in June. I love Rhinebeck and I think I just filled my calendar for June 21, 22, 23.
And, my calendar is filled for tomorrow, too. Plan to be here for a conversation about neuroplasticity of the brain and some thoughts about interventions that may be a bit more effective than the old, "put your keys in the same place every day."
Stay
Tuned
IT'S #LGFBWeek LOOK GOOD--FEEL BETTER
Disclaimer: I was invited to participate in a campaign to promote Look Good Feel Better program. There are give away prizes and in the spirit of transparency and good blogging practices, although I'm not in the hunt for anything, I want to be sure I disclose that before I say one more word.
Look Good Feel Better is just one of the many support services offered by the American Cancer Society. They are taking their program social. There will be a tweet chat on Wednesday featuring advice and tips from a group of highly accomplished experts. I hope you will take the time to share this with anyone who is in active treatment.
I never attended one of these sessions although I wish I had. Every person who has ever talked about the program has had more to say about the camaraderie and the laughter. I've always come away thinking, the looking good part was secondary to the feeling better part of the program. There is nothing better than knowing we are not alone no matter where we are in the scope of the treatment and the aftermath.
A bit about the week and the launch of the mobile apps are in this information provided to me by LGFB:
What is Look Good Feel Better?
Look Good Feel Better (LGFB) is a global program aimed helping people with cancer cope with the appearance-related side effects of their treatment. For 24 years, the program has served more than 800,000 people with cancer in the U.S. and more than 1.2 million people with cancer around the world through free workshops, self help materials and webinars run by a team of 7,000 volunteer beauty experts. LGFB works to help cancer patients look and feel like themselves again – giving them self confidence, hope and a sense of normalcy.
What are the ‘LGFB Beauty’ Mobile App and Web Tool?
The LGFB Beauty app and web tool provide a step-by-step walk through of the Look Good Feel Better 12-step beauty program, covering a variety of topics from skin care to proper cosmetic applications to the use of turbans, hats and wigs. It also features expert advice in the form of instructional videos from fashion expert Stacy London and celebrity makeup artist Carmindy. How does it work? LGFB Beauty uses a person’s own image, captured through their mobile device or webcam, as well and/or images of past LGFB participants, to dynamically demonstrate how to combat the outward side effects of cancer treatment. Users can try on different shades and styles – creating and saving numerous different, unique looks.
Who is it for?
The new Look Good Feel Better, mobile and web applications have been designed specifically for cancer patients. They will be used also at the point-of-care – by medical professionals looking to introduce patients to the program – and by family members and other loved ones interested in learning more. Though a digital app can never fully capture the one-on- one support and connections created through LGFB’s live workshops, LGFB Beauty is designed to help reach those patients unable to attend a live session, and to further educate those who may be hesitant to attend one.
Where do I get it?
LGFB Beauty mobile and web applications are now available for iPhone® and iPad® in the AppStore® and accessible online or for other mobile operating systems at www.lookgoodfeelbetter.org.
Look Good Feel Better is just one of the many support services offered by the American Cancer Society. They are taking their program social. There will be a tweet chat on Wednesday featuring advice and tips from a group of highly accomplished experts. I hope you will take the time to share this with anyone who is in active treatment.
I never attended one of these sessions although I wish I had. Every person who has ever talked about the program has had more to say about the camaraderie and the laughter. I've always come away thinking, the looking good part was secondary to the feeling better part of the program. There is nothing better than knowing we are not alone no matter where we are in the scope of the treatment and the aftermath.
What is Look Good Feel Better?
Look Good Feel Better (LGFB) is a global program aimed helping people with cancer cope with the appearance-related side effects of their treatment. For 24 years, the program has served more than 800,000 people with cancer in the U.S. and more than 1.2 million people with cancer around the world through free workshops, self help materials and webinars run by a team of 7,000 volunteer beauty experts. LGFB works to help cancer patients look and feel like themselves again – giving them self confidence, hope and a sense of normalcy.
What are the ‘LGFB Beauty’ Mobile App and Web Tool?
The LGFB Beauty app and web tool provide a step-by-step walk through of the Look Good Feel Better 12-step beauty program, covering a variety of topics from skin care to proper cosmetic applications to the use of turbans, hats and wigs. It also features expert advice in the form of instructional videos from fashion expert Stacy London and celebrity makeup artist Carmindy. How does it work? LGFB Beauty uses a person’s own image, captured through their mobile device or webcam, as well and/or images of past LGFB participants, to dynamically demonstrate how to combat the outward side effects of cancer treatment. Users can try on different shades and styles – creating and saving numerous different, unique looks.
Who is it for?
The new Look Good Feel Better, mobile and web applications have been designed specifically for cancer patients. They will be used also at the point-of-care – by medical professionals looking to introduce patients to the program – and by family members and other loved ones interested in learning more. Though a digital app can never fully capture the one-on- one support and connections created through LGFB’s live workshops, LGFB Beauty is designed to help reach those patients unable to attend a live session, and to further educate those who may be hesitant to attend one.
Where do I get it?
LGFB Beauty mobile and web applications are now available for iPhone® and iPad® in the AppStore® and accessible online or for other mobile operating systems at www.lookgoodfeelbetter.org.
Friday, April 19, 2013
LONG WEEK.......
Sending love and support in every direction.
Was up far too late last evening.
At 11:45PM as I was getting ready to go to bed, I looked up at the muted television to see the words,
"MIT Police Officer Shot" .... Wasn't long before it was reported that he died.
At 3AM, I finally turned the television off.
Boston and the suburbs looked like the wild west.
People posted video from their phones. Shoot outs. Dorm rooms with bullet holes through a wall and a chair.
It seems like the only thing to say?
#BostonStrong
#West (Texas)
Too many tragic deaths. Accidental, purposeful, murder....
It's time to turn the page on the calendar and close out this week.
Was up far too late last evening.
At 11:45PM as I was getting ready to go to bed, I looked up at the muted television to see the words,
"MIT Police Officer Shot" .... Wasn't long before it was reported that he died.
At 3AM, I finally turned the television off.
Boston and the suburbs looked like the wild west.
People posted video from their phones. Shoot outs. Dorm rooms with bullet holes through a wall and a chair.
It seems like the only thing to say?
#BostonStrong
#West (Texas)
Too many tragic deaths. Accidental, purposeful, murder....
It's time to turn the page on the calendar and close out this week.
Thursday, April 18, 2013
GREAT USE OF TWITTER @AmericanAir -- THANK YOU -- THANK YOU !!!
It's hard to think about anything beyond explosions and horrific injuries. I know I've mentioned this before but my dad had some great quips. Took me years to understand their meaning. With age comes wisdom? I hear his voice over and over again.
Major props to American Airlines. Not too sure the sentiment will be the same from the young man who slept on a cot at the airport but I'm thankful for the information, the exchange of messages and a willingness to help in whatever way they could. Well done.
"Life turns on a dime, Annie."
(Yes, he called me Annie and he's the only person on the planet who did so.)
There are lots of people facing lots of really lousy things right now. There are people in my personal life, family and dear friends who are dealing with some fairly serious things . Some are really high on the serious scale and I am destroyed and angry. I listen, I hold hands and I cry. I get angry. I cry some more.
Then, there will be more biopsies but I must respect the privacy of others. I'll just say this. One of the things that drove my surgical decision wasn't a recurrence of the cancer. I recall reading observations about second cancers twenty years later. I recall thinking, "Do I want to be doing this again in twenty years?" It happened to my mom and now, it happened to another woman who is near and dear to my heart. Nineteen years after the first cancer, "something" looks suspicious on a mammography. I will be with her for the needle biopsy. Surreal.
Monday started out as a great day. I was watching twitter, reading what my friends were saying on the steps of the Supreme Court, enjoying the photographs. The transcript was posted and I began to read. I wasn't quite finished when I left for yoga at 2:30. By 3:25, my phone was chirping. My son. He is my information compass. The text said, "two explosions at Boston marathon." I didn't see the text until 4PM, came straight home and my week pretty much ended on Monday.
Tonight, I am watching horror in Texas. I heard explosion, Waco, fertilizer and my mind went to April of 1995, Oklahoma, truck bomb, fertilizer. There is absolutely NO basis for those thoughts except to say it surely is an odd coincidence after a deliberate attack in Boston that an unrelated accident should have such eerie similarities.
I'm drained. Yesterday did me in.
I do want to acknowledge the good in people and in HUGE companies. Son was in Chicago for a quick business trip. When I arrived home, my daughter announced, "Flight cancelled, stuck in Chicago, just called." Helicopter mom sprang right into action. I jumped on the American Airlines website while simultaneously dialing the phone to see what was happening in Chicago. I turned to twitter and immediately saw there were serious weather issues in Chicago and over 300 flights were cancelled. I was trying to book him on any other flight.
As I was jumping on and off websites, I saw that American Airlines had a system wide problem with computers but that was on Tuesday and it was a bigger issue in Dallas. Not so fast. Apparently, in addition to the extremely severe weather in Chicago, there was another problem with AA's computer system. Those who aren't in the twitterverse: Are you beginning to see how valuable twitter can be in circumstances like these?
Plus, I was multi-tasking! Kid on the phone, checking every website for alternate flights, calling airport hotels and frustrated as all hell at the lack of information in the information age.
I tweeted:
Updates please! @americanair and @fly2ohare? Son stranded, AA website down, airport site no info, weather forecast same 2moro.Shortly after, I followed it up with this:
— AnneMarie Ciccarella (@chemobrainfog) April 18, 2013
Note to @americanair and @fly2ohare THIS is purpose of social media. Information. Get the message to those in airport & those waiting.Immediately, I received messages from two "strangers" except they aren't strangers. They are part of my social media crowd. Each of them was prepared to put him up for the night. I don't even know how to describe the overwhelming gratitude I felt when I saw those messages. And then, I saw this:
— AnneMarie Ciccarella (@chemobrainfog) April 18, 2013
@chemobrainfog We're sorry to hear your son is stranded, AnneMarie. What's his flight number?Bottom line? As I was putting this post together, I went to find that tweet and what I saw was the perfect use of social media in an evolving and what was surely complete chaos at the American Airlines offices. Based on the sheer number of messages they sent, I doubt a single tweet was unanswered. They couldn't control the weather, they couldn't control a computer snafu but they could respond in real time and I call that a big win and an exceptional use of social media.
— American Airlines (@AmericanAir) April 18, 2013
Major props to American Airlines. Not too sure the sentiment will be the same from the young man who slept on a cot at the airport but I'm thankful for the information, the exchange of messages and a willingness to help in whatever way they could. Well done.
Wednesday, April 17, 2013
RESPONSIBLE ADVOCACY
Patient Advocacy and Social Media. There are so many aspects of advocacy which was the reason for my ongoing dilemma and the procrastination about that poster. I wanted to make sure I was clear that I am the Patient AND I am the Advocate.
The (for lack of a better term) moniker, Patient Advocate has been used in so many ways and in so many places, I was having difficulty framing the message I wanted to convey. I was playing with acronyms. Ultimately, I settled upon the use of a dash. Patient-Advocate.
I shared my thoughts about the connections we make, our collaborative efforts and the communities we seek to build. I wanted to encompass my belief that we belong all along the paradigm. From bench to bedside. This was quick and concise. An anomaly for me..... the wordy one.....
That was my springboard to the lengthy explanation. I've become quite fond of bullet points. They work well. Easy to read and cut right to the core.
The only way, and this is my own opinion, but I do believe the only way we can expect to be treated as partners on the same side of the table is if we understand and fully embrace the importance of evidence based medicine and good science. It starts with an idea.
Some ideas, like for example, flying a kite with a key on the line in the midst of a thunderstorm can be a tad on the risky side but we all know the saying, "No pain, no gain." In research that translates to "High risk, high reward." In reality, it screams, "Ballsy." Or, "Stupid." The bottom line, it proves or disproves what was an idea.
It doesn't matter how compelling something might seem, until science steps in, it's merely an idea. In the case of disease, a better term to explain an illness cluster might be "coincidental." Until someone is able to formulate quality scientific experiments and then execute those experiments, those who rely on coincidences that fly in the face of science may be causing harm, creating hype and advancing an ill-conceived movement.
Where am I going with this? Two places.
First, I'm on a campaign with headlines. Whether they are in science digests or the NY Times, if something was done in mice and is YEARS from human trials, which is the case with this headline:
or if something has a nearly identical risk/reward but is headlined:
The (for lack of a better term) moniker, Patient Advocate has been used in so many ways and in so many places, I was having difficulty framing the message I wanted to convey. I was playing with acronyms. Ultimately, I settled upon the use of a dash. Patient-Advocate.
I shared my thoughts about the connections we make, our collaborative efforts and the communities we seek to build. I wanted to encompass my belief that we belong all along the paradigm. From bench to bedside. This was quick and concise. An anomaly for me..... the wordy one.....
Each and every one of these items is an important part of advocacy but the words at the pinnacle?
Evidence Based Medicine
The only way, and this is my own opinion, but I do believe the only way we can expect to be treated as partners on the same side of the table is if we understand and fully embrace the importance of evidence based medicine and good science. It starts with an idea.
Some ideas, like for example, flying a kite with a key on the line in the midst of a thunderstorm can be a tad on the risky side but we all know the saying, "No pain, no gain." In research that translates to "High risk, high reward." In reality, it screams, "Ballsy." Or, "Stupid." The bottom line, it proves or disproves what was an idea.
It doesn't matter how compelling something might seem, until science steps in, it's merely an idea. In the case of disease, a better term to explain an illness cluster might be "coincidental." Until someone is able to formulate quality scientific experiments and then execute those experiments, those who rely on coincidences that fly in the face of science may be causing harm, creating hype and advancing an ill-conceived movement.
Where am I going with this? Two places.
First, I'm on a campaign with headlines. Whether they are in science digests or the NY Times, if something was done in mice and is YEARS from human trials, which is the case with this headline:
RESEARCHERS DEVELOP NANODIAMOND DELIVERY SYSTEM FOR TRIPLE NEGATIVE BREAST CANCER
BREAST CANCER DRUGS URGED FOR HEALTHY HIGH-RISK WOMEN
I have a problem with it.
I'm in a See Something, Say Something mode. Maybe it was being around all of those science minds for five days. You can find my little project on Scoop It and because I was so annoyed by a series of articles that hit my medical feed, I had no time to come up with a snappy title. It's simply called Accuracy of Headlines.
The second place I am going with this good science and evidence based medicine and the responsibility of advocates to share with care is to a story I found on MedPage Today. Reprinted here, it underscores the power of social media in driving health decisions in some communities and in this case, the decisions are not based upon responsible advocates sharing solid science.
This is an example of an accurate headline and one that is very disturbing to me. Actions were taken, or more accurately, NOT taken, based upon social media and misinformation. This reflects poorly on all of us who are trying to be diligent when we share what we learn. Mostly, this may be harming children.
Note: Emphasis mine, parenthetical remarks aren't essential to the story but I left them in for the hard core science types.
Parents who didn't have their children fully vaccinated relied
strongly on the advice of members of their close social networks in making
decisions about immunizations, a study showed.
The odds for nonvaccination was 36 (95% CI 6 to 162) among
parents who said that one-quarter to one-half of members of their close
contacts recommended avoiding vaccinations, according to Emily Brunson, PhD, of
Texas State University in San Marcos.
The odds rose further, to 273 (95% CI 37 to 2,028) when half to
three-quarters of social network members advised avoidance and to 1,642 (95% CI
131 to 20,663) when 75%-100% of members advised against vaccination, Brunson
reported online in Pediatrics.
Because most vaccines are administered when children are small,
the important decisions are made by parents.
However, "parents rarely reach conclusions completely on
their own. Rather, they rely on others, such as healthcare providers, family
members, and friends, for information, direction, and advice," Brunson
wrote.
To explore the influence of parents' social networks, defined as
"the people they interact with as well as the sources of information they
consult," she conducted an online survey in King County in Washington
state, an area with high rates of nonvaccination.
Participation was limited to first-time parents born in the U.S.
with children who were 18 months or younger.
The survey questioned parents about their perceptions about
vaccines and infectious diseases; the people they most closely rely on for
advice; and what other sources they use for health information.
The researcher then analyzed the data in three models: the
parents' characteristics, their "people networks," and their
"source networks," comparing the models with Akaike Information
Criterion (AIC) calculations to establish statistical validity, with lower
scores reflecting the accuracy of the model.
A total of 196 first-time parents participated, with 126 being
considered "conformers," in that they followed and completed the
vaccination schedule for the child, and 70 "nonconformers," who
delayed or avoided immunizations.
Nonconformers had a significantly less positive view of
immunization as rated on a five-point scale (2.8 versus 2.1, P<0 .001="" all="" and="" before="" child="" done="" enrolled="" half="" have="" in="" intended="" o:p="" only="" school.="" the="" to="" vaccinations="">
In the people networks, nonconformers reported more social
network connections (mean 6.7 versus 4.8, P=0.05) and included more
women (71% versus 65%, P=0.05).
The most striking difference between the conformers' and
nonconformers' people networks was that 72% of the nonconformers' network
members also were in favor of nonconformity, while only 13% of conformers'
network members held that view.
Both conformers and nonconformers considered a spouse or partner
and healthcare provider as being among the most important network members,
followed by family and friends.
More nonconformers stated that they had a source network (100%
versus 80%, P<0 .001="" 3.4="" and="" included="" more="" p="0.01).<o:p" sources="" they="" versus="">
As with the people networks, more of the nonconformers' sources
recommended against vaccination (59% versus 20%, P<0 .001="" o:p="">
In the AIC analysis of the model that included parental
characteristics, the score was 163.1 and conformity was associated with high
household income (odds ratio 0.17, 95% CI 0.03 to 0.81), while having a
post-university education was more likely among nonconformers (OR 5.34, 95% CI
1.05 to 27.08).
For the source network model, the AIC was 168.3, and once again,
the only significant factor was the number of sources favoring nonconformity,
with the OR of 35.75 (95% CI 9.96 to 128.27) when three-quarters or more of
sources advised against vaccination.
In the people network model, the AIC was 99.9, with
substantially higher percentages of nonconformers' network members expressing
unfavorable views of vaccination. This AIC value, lower than for the parent or
source models, suggested that this was the strongest influence on parents'
immunization decisions, according to Brunson.
The findings also point to a less important role for source
networks, such as media, compared with personal contacts, and to a lesser
influence for parental demographic factors.
The observation in this study of the importance of social
networks "strongly implies that for interventions aimed at promoting vaccine
acceptance to be successful, they must take a broad approach, one that is
capable of influencing not only parents but the people parents might discuss
their vaccination decisions with," Brunson wrote.
A limitation of the study was the possibility of recall bias.
In an accompanying commentary, Douglas Opel, MD, and Edgar
Marcuse, MD, of the University of Washington in Seattle, observed that efforts
to increase vaccination rates will need to recognize the social forces
involved.
"As a society, we respect the privacy of healthcare
decisions; however, if we are to sustain adherence to the recommended
immunization schedule as a social norm, we need to learn how to empower
immunizing parents to become vocal and talk with other parents, including
prospective parents, about why they chose to immunize their children,"
they wrote.
"We
must develop and test public health interventions that are based on the
cognitive processes actually used by parents in their immunization
decision-making while working to increase the role of science in parents'
decision-making," observed Opel and Marcuse.
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