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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Wednesday, March 12, 2014

ADVOCATING FOR #MENTAL ILLNESS

I've learned something about advocacy.  It's something I learned at my very first advocate event.  It's not about me.  It's about my story and how I can personalize my story within the framework of how it impacts the community for whom I advocate.

As a breast cancer patient, I have always been able to detach my own emotions.  I can speak on behalf of the needs of our community with ease and if my brain doesn't get in the way, I can generally make the points I feel must be shared.  I can discuss matters that are necessary to help all of us.  I listen to others, I monitor what is being shared on twitter and in the blogs.  Despite my mom's mets diagnosis and the fact that I've watched so many die, despite the fact that I know some of you are burning through the paltry number of available treatment options, I've been able to keep my emotions in check.

I've expanded my efforts to advocate on behalf of those living with serious mental illness.  Not just the bouts of depression that have come and gone over the course of the past several years in my own life, primarily triggered by external circumstances and in no way am I minimizing how terribly debilitating that can be, but I speak of those living with things that are at the top of the mental illness scale.  These are people who may look like there is nothing wrong with them, but they are people who struggle in ways I can't begin to understand.  I try.  I empathize but I can't truly understand.

I can relate to the frustration of a misfiring brain because of the damage I suffered from the chemotherapy that hopefully will keep my cancer from recurring.  While frustrating and at times, debilitating, it's still not mental illness.  At times, it feels like it must be close.  When I listen to others who have been diagnosed with brain illness talk about their disorganized thoughts getting in the way, I understand.  Yet, I can point to the poisons infused throughout my body.  I know why and I know how this happened to me.

Those who suffer from forms of psychosis don't get the luxury of understanding.  Science hasn't come to the point of understanding why so called normally functioning people just break from reality: why diseases like bipolar disorder or schizophrenia suddenly blindside them, derailing their lives, their dreams and they find themselves trying to make sense of the senseless, trying to define a new path for themselves.

This is now highly personal.  After months of intense care, I'm trying to help transition a young person from the bubble of safety that comes from such a high level of care to a more independent life.    The next logical step is appropriate housing and outpatient care involving medication management with a good psychiatrist, a therapist who can keep a close watch to make sure there isn't a backward slide which might lead to another psychotic break, peer support through group therapy and a reintegration into life.  Like cancer, ideally these professionals should be in constant communication.

Appropriate housing was arranged.  Fortunately, there is an apartment that will not be a financial burden to anyone.  Care, on the other hand, is another story.  I have spent the past three weeks working with several people including a social worker, an insurance company advocate, people running different programs in the NYC area that would be appropriate for someone who is capable of moving forward and after three solid weeks, not one thing is in place aside from the housing.

On Monday evening, the frustration finally reduced me to a heap of tears.  Eleven hours of phone calls, and not one acceptable solution.  Indeed, not even one UNacceptable solution.  Basically, NO solution.  By 6:30PM, I could take no more.  I sat down and began to sob.  How is it possible that someone who needs support to jumpstart their life has no options for care?

I find this beyond disgraceful.  I know how to navigate this stuff and every door was slammed in my face.  Programs have fallen victim to budget cuts.  More mental health dollars are being spent on ME and the likes of me, rather than those who are in true need of care.  This is something that must change.  I will be in Albany next Tuesday with NAMI, making noise at the state level.  But really, I want the noise to be a national conversation.  I'm going to find a way to get myself to the National Council for Behavioral Health Conference in Washington DC which is taking place in May.

I'm still learning and there is much I don't understand because I haven't had the opportunity to listen to the patient population or their families.  I'm looking through a small prism at the moment and until I can get all of my facts straight, I want to proceed cautiously.  I fear that my advocacy will not be properly effective.  I'm unsure I will be able to share the frustration I've experienced over the past several weeks without having my emotions bubble over.  I know from my brief meeting with Tom Insel (yes, I'm name dropping), the director of the National Institute of Mental Health, that some mental illness advocates struggle with evidence based medicine and with the science.  While I don't have those struggles, I'm not so sure about those emotions.

I do know I'm not prepared to write this population off which is what seems to have been happening, slowly but surely.  And so, I will give it my best shot.  I will try.

Those who have, can draw from an endless well of funds to buy the best care for their loved ones.  The rest, THE MAJORITY, are left to scramble for crumbs and the crumbs are barely edible.

I'm not okay with this.  I'm not okay with jails being used as holding cells for mentally ill persons.  I'm not okay with homelessness.  I'm not okay with HIPAA handcuffing families.  There is a fine line between the rights of an individual and the need for family involvement.  It's a line that needs to be well-defined and it's a line that I hope to help draw.

Care to help in a small way?  Consider reaching out to your national representative and ask them to support HR3717: The Helping Families in Mental Health Crisis Act of 2013.  It's a start.  We need to start somewhere.

PostScript:  It's Brain Awareness Week.  Are we sufficiently aware of the stigma attached to diseased brains?  To damaged (chemo)brains?  Are we including everyone's brain in this awareness campaign??  Awareness.  It's a trigger word for me.  I hope brains does it better than breasts.

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