Monday, April 21, 2014

MY APOLOGY TO WOMEN IN #INDIA

I've written about this a number of times.  I've expressed dismay, outrage and downright disgust at the whole thing.  Women in India were treated like lab rats.  They were allowed to die of what is considered a highly curable disease.  Cervical cancer.

Back in February of 2013, I wanted to know why the shit hadn't hit the fan.  This was the very first time I wrote about the questionable ethics associated with two different studies.  The blog post had a similar title about shit hitting fans.

A bunch of things happened between February and September which prompted a few other blog posts.  I attempted to outline the whole sordid mess with links to everything I could find in this post.  If you aren't familiar with the story, that might be a good place to start.  Bearing in mind I have challenges when a story has enough pieces to assemble a decent sized jigsaw puzzle, it may be hard to follow.  Stick with the bullet points and you should be okay.

Today, an update.

Dr. Eric Suba deserves a ton of credit for his tenacity.  Ditto Bob Ortega for writing about it again and again.

Dr. Suba delivered a keynote less than one month ago at Tuskegee University: "Tuskegee 2.0: US Funded Cervical Cancer Death Rate Measurements in India."  The keynote was at a commemoration of the 1997 apology by President Clinton for the shameful Tuskegee Syphilis Study.  I'd say that was a pretty big deal.  In a Facebook post, Dr. Suba synopsized his talk as follows:  "...you can't let people die to show something you already know; that, if you do, you should apologize; and that somewhere between Tuskegee 1.0 and Tuskegee 2.0, greed became good."

Right; Right; and Right.  On all counts.  And many more.

On April 17th, an article by Dr. Suba was published online, ahead of print in the Indian Journal of Medical Ethics.  He discusses the ethical and the scientific concerns behind the studies.  There were two.  Both were funded with US dollars.  The NCI funded one of the studies, The Gates Foundation funded the other and ASCO touted the whole tragic mess as a great success story.

Personally, I think ASCO dropped the ball on this one.  Actually, I KNOW ASCO dropped the ball.  These studies broke absolutely NO NEW GROUND.  We don't need to set up a randomized control trial to provide care within the existing infrastructure in third world countries.  We do need to find ways to just get the job done.  ASCO turned a researcher using highly suspect methods into a hero.

Women died.  Unnecessarily.  The count is now 254.  The story appeared in today's edition of The Times of India.  According to the article, these studies would not have been permitted "in the country of the funding organizations."  Damn straight.  And each of the studies was in violation of both international and national (Indian) guidelines.

Who's going to be the first to apologize?  There are 254 families that deserve far more than an apology.  And countless others, too.

ASCO?  Bill &/or Melinda Gates?  The National Cancer Institute?  The US government?

Yes, yes &/or yes, yes and yes.

But I'll start with me.  As a citizen of this country and a patient advocate with a big mouth, I would like to apologize to the women of India and to the families of those women.

This should not have happened.  Not. Ever.  And I'm deeply sorry.
 

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Thursday, April 10, 2014

DO BRAIN GAMES HELP #CHEMOBRAIN?

To say it's been a bit busy is a tad bit of an understatement.   I'll spare the details except to say that April 15th is looming and I hope there will be no extension to file personal taxes this year.  To say THAT has been a challenge is a massive understatement.

I'd like to share an infographic that was sent to me by DegreeLibrary highlighting their findings with regard to "brain training."

When I had my neuropsychological evaluation in 2011, I've already shared that "areas of difficulty" were identified.  Since these "areas" were all around numbers, it explains the challenges previously mentioned at the opening of this post.

I participated in a clinical study using CogMed software.  The results have yet to be published.  The only thing I DO know is that I was using the real program.  There was a placebo arm in the study and after all of my evaluations were complete (1 month and 3 months after the conclusion of the five week training), I was told I was using the real deal.  This was a good thing because there were times during the training I was ready to hurl my laptop at the nearest wall.

Bottom line, although CogMed is not specifically mentioned in this chart, that particular software program was written up in Science Direct.  Bottom Bottom Line.  We simply do not know if these programs are helping the general population and we definitely don't know if they are helping those of us whose brains may have been damaged from cancer and/or the treatment of cancer.

I'm all about hard evidence.  Good science.  Right now, there is no hard evidence for any of this.  And, I recall the brilliant doctor who was at the head of the study protocol telling me, "Don't waste your time with crosswords or sudoku.  If you like doing them, do them for enjoyment but you won't derive any medical benefit."  Of note:  the crosswords and the sudokus were actually hurled at the wall.  They were chemobrain torture.

I learned about working memory and short term memory.  Yes, they are different.  I understand lots about neuroplasticity of the brain.

I've learned much.

Mostly, I've learned that without an assistant at my side to keep me on track, to keep me from flying off the rails, I can NOT perform at the levels I could in my pre-cancer life.  I know there are many of us in this boat and I know, too that it's really frustrating to constantly hear, "I didn't have cancer/chemo; what's my excuse?"

I don't know about you, but I CAN discern a chemobrain moment from a senior moment.  They are different.  They feel different.  I will readily admit my normal senior moments.

Thanks to Aria Cahill for sharing this with me.  Just like there is lots of talk about those standardized tests they administer in school which I happen to feel stifles real learning because teachers are forced to teach for the test, are we simply just getting good at the games because we're using the games?  Is it translating to real world situations?  I'm not so sure.  There is much work to be done.

The short answer to my question, "Do brain games help chemobrain?" is quite simple.

We just don't know.

And this is food for thought......


 

Brain Training




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Tuesday, April 1, 2014

MY SECOND WIND - FILLED WITH LOVE

This was pretty awesome.  And nerve wracking.  And thanks to the flu, although I was able to write what I wanted to say, it wasn't so easy to nail the entire thing from memory.  As you can see from the photo, there was no podium, no microphone (it was clipped on my ear)--it was just me.  Talking.

TED style.  No props.  No powerpoint slides to guide me along.

This was the launch of the Second Wind Tour.  The energy was wonderful.  My talk as I intended to deliver it can be found below the photos and copies of the tweets.  I know I missed a few points at the very end but I felt very strongly about not having papers in my hand.  OK, I'll admit it.  That had more to do with vanity than the papers.  I didn't want to wear my glasses.

My iPad was on the music stand.  As I walked on stage, I placed it on the stand, sharing with the audience, "How they asked someone with chemobrain to give a talk is beyond me, thus, the iPad -- just in case....."

I would be remiss if I didn't offer tremendous thanks to Health Republic of NY who sponsored the NYC leg of the tour.  YES, my health insurance company.  They invited me to speak on their behalf, to tell my story and I certainly hope I met their expectations.

Thanks, too, to AARP NY for sending this into the twitterverse with the accompanying photo!!



And to Beth Finkel, AARP NY State Director for sharing the last part of the show.  The musicians are world class.  Samite is from Uganda.  To say he is a humanitarian barely scratches the surface.  You simply must go to his website if you are not familiar with his work.

And mostly, thanks to all of you, for reading, for sharing, for connecting.  If not for each and every one of you, none of this would have happened.  Without the connections here, there is no second wind.  I am deeply humbled and so grateful for the gifts you have bestowed upon me.  


THIS IS WHAT I SAID, MOSTLY...... 

It's never too late to become who you might have been.

George Eliot, a British author is credited with that quote.

When my daughter was in her teens, she would frequently suggest, "It's never too late, mom," in response to any remark I might make about doing just about anything.  We had a habit of doing this dance.  One of us exasperated (Her), the other, eye rolling (Me).  I recall on more than one occasion explaining to her that there IS a point in life when these great inspirational quotes no longer apply.  That it is too late to switch paths, change course.  Only in the movies, does someone hop off a tour bus and decide to start a new life under the Tuscan Sun.

She was young and idealistic and I was seasoned and jaded.  And realistic-or so I thought.

In the spring of 2006, a curve ball was thrown my way.  This is just a teeny snippet of what happened in the span of 15 months.  My routine mammography returned suspicious findings.  Three biopsies and almost four months later, I was told I had invasive breast cancer.  Several surgeries, procedures and eight rounds of chemotherapy followed.  Midway through my own treatment, my dad, a healthy 70 year old, was diagnosed with an early stage lung cancer.  For a while we were on parallel treatment paths, I can think of better paths to share than cancer.  Complications from treatment would cause his untimely death less than a year after my own cancer diagnosis.  As if the times weren’t rough enough, three weeks after my dad’s death, my mom was diagnosed with breast cancer for the second time, 20 years after her first bout with the disease.

To say that I was frenzied, doesn’t even begin to describe how I felt.  I experienced the full gamut of emotions.  Fear, anger, denial, sadness.  It was messy time but slowly things began to get back to normal.  I settled back into work: managing two commercial construction companies and doing all of the accounting for each.  As the weeks turned into months and the months extended beyond a year, I noticed I was struggling to keep all of the balls in the air.  I blamed it on the work load, I blamed it on the constant interruptions, I blamed it on being pulling in too many directions by too many people, I blamed it on everything I could think of until I finally came to the realization, maybe, it’s YOU.

I had a neuropsychological evaluation done by a doctor who understands the nuances associated with chemotherapy induced cognitive impairment.  Chemobrain.  After a series of tests than spanned more than three hours, I felt like my brain was dripping out of my ears. The doctor shared some preliminary findings.  She told me she identified areas of difficulty.  Quote:  “Your problems are primarily around numbers so it’s not really a big deal.”  She looked down at her notes, saw the word “accounting” which prompted her to say, “Well, I guess in your case, this could be a problem.”  Ummm, yeah.  Little bit.

At that moment, and in the days and weeks that followed, I was a lost soul. My skills were in accounting and management.  I wasn’t marketable.  I was too old AND I was incapable.  Sitting on the sofa watching mindless TV, really not for me. 

So, Now WHAT??  A friend suggested I might consider writing a blog. “ABOUT WHAT?” I wanted to know in a tone that wasn’t exactly friendly.  “Breast Cancer?  That’s utterly ridiculous.  There are enough voices in cyberspace about breast cancer.” Plus, I didn’t know a thing about blogging. My understanding of the internet didn’t extend much past Dr. Google and finding my way on several occasions into that internet pine box.

My only knowledge of social media was Facebook.  And the sole purpose of FB was a means of stalking my kids.  Checking their updates was a way of knowing they were okay without being a complete nag.

My friend was persistent and relentless with the blog gig.  Same tone, same tenor, same words.  Her: “Write a blog.”  Me: “About What?”  Until one day she said, “Chemobrain.”  Suddenly, my tone and tenor went from “you are annoying me to no end,” to “Now that’s something I might be able to do.” 

When I realized my life took a turn to the left and I was still going straight, I could fight it or I could embrace it.  I could continue my present path, or, I could choose to turn left and see where it might take me.  I don’t buy into the “cancer is a gift” theory—Seriously, where’s the receipt, I’d like to return it---- OR that my cancer diagnosis was part of some grand plan for me to live a more fulfilled and meaningful life.  I was quite happy with my life and this is not a path I would have chosen to take.

A cancer diagnosis IS a pretty big deal.  It’s traumatic.  While you are in treatment, it’s an in your face thing.  Then, the active part of the program subsides and that’s when the fun begins.  Learning, not only to weave the trauma into the tapestry of my life, I slowly realized it was a catalyst for post traumatic GROWTH.   

I began to write.  I found my voice.  I found a passion previously unbeknownst to me.  I reached out to people.  I volunteered at the hospital where I was treated and I volunteered with a number of local and national research and outreach organizations.  I made tons of friends.  The magic of community that began on social media spilled from the computer screen to my brick and mortar world.

I think of all of the relationships and the opportunities that have come my way because of that silly little blog.  My life is completely different from anything I could have envisioned.  And exponentially more fulfilling.  First it was about the writing, hoping that my words would resonate with just one person, validate the feelings of just one person.  Then, it became so much more.  It served as the conduit to The Next of My Life.

Somewhere along the line, I turned into a science geek.  I pore over new research findings.  I follow meeting hashtags – if you aren’t familiar with twitter, that means nothing to you but there is power in that little tic tac toe board, the hashtag.

And somewhere else along the line, I turned into someone who is unafraid and unapologetic.  I speak out about what I believe to be true and just and I speak for those who struggle to make their own voices heard.

I’ve found ways to tune out the static, to focus on following where my heart and my thoughts are trying to lead me.  I still shake my head in amazement at some of the things that have happened over these past two years.  I cherish every relationship that has developed because of that blog.  I stand here today because I walked away from what was familiar and comfortable and embraced something so different from anything I knew.

A rebirth.

Sometimes, we can become who we were meant to me and in my case, I think it’s about time I apologize to my young and idealistic daughter for every single one of my jaded, seasoned eye rolls.



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