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Wednesday, June 25, 2014

ANOTHER CELEBRITY, ANOTHER STORY

AND YET, we are all different.  Cancer is not one disease, but many.  Breast cancer is not one type of cancer but a site specific disease with many subtypes and and many MORE molecular signatures, proteins, pathways and every other conceivable thing that researchers are learning about each and every day.  Yet, there is no breakthrough.  None.

Research is evolving and it is evolving at warp speed for some.  For others, not so much.  There was an infographic from the recent ASCO (American Society of Clinical Oncologists) meeting touting those five year survival rates.  Just as an aside, that is a statistic I happen to abhor.  A show of hands please.... Who among us is a five year survivor living with metastatic breast cancer.  Off the top of my head, I can come up with 20 names in a millisecond.  I am not one of those 20, but my mom is and so are many of my friends, quite a few of whom succumbed to this wretched disease in a very short period of time.

However, this particular infographic was telling and chilling.  It can be found on Phrma.org, the Pharmaceutical Research and Manufacturers of America.  The Value of Cancer Medicines may have fallen under the radar but something jumped off the page when I glanced at just one section of the image.

With apologies for not obtaining proper permission for cutting out this piece of the image to include here, something is really wrong with this picture.  Or maybe, it's the way the statistics are being read and interpreted.  Anyone who knows me, knows how I have a problem with the presentation of statistics.  Anything can be skewed to punctuate a point.  I'm choosing to highlight something that gets lost in the pink hype.  I'm not being militant.  It gets me no where fast.  I am pointing out, for the umpteenth time, we have made little or no progress with breast cancer in the only area that matters.  DEATH.


I have been saying that breast cancer is NOT the great success story it's so often hyped to be; it's just the one that's been best marketed.  This is a sobering reminder of how far we've come in 40 years.  Yes, 40 years.  I would hardly call a gain, that in simple math, equals one half of one percent per year.  I certainly do not see this as a dramatic increase in survival.  It's actually abysmal.

And now to the headline.  Joan Lunden is the latest celebrity to join this club.  I'm not going to steal any of the quips or lines I read anywhere else but let's just say that Good Morning America seems to be suffering from the Breast Cancer version of the SNL early death syndrome.

I've seen people criticize the use of the war metaphors.  Frankly, although not my cup of tea, I respect everyone's right to do cancer their way.  And there is no right way to do cancer.  There is only the way that works for each of us.  I have little patience for sitting in judgement over choice of words.  Ditto, cancer is a gift.  Not for me, but for someone else, maybe. Again, none of my business to criticize.

My rub?  And I've said this before.  Tell the whole story or don't say anything.  Get ahead of the tabloids and TMZ.  Yes. Announce there has been a diagnosis because yes, it will come out, likely sooner rather than later.  Control the information.

"I've been diagnosed with breast cancer."  or  "I am being treated for breast cancer."

Perfectly fine.

Also fine and something that is a source of (seeking the right word... thank you chemobrain) solidarity (it's not the word but it's the best I can find thanks the the word drop):

"In the beginning you almost feel like, 'What did I do wrong?' "

On an interview sofa, stick to the feelings, the emotions and leave the science behind the diagnosis out of the conversation. Realize, too, that many of those watching do not have anywhere near the ability to access the same level of care.  Understand that your message is being discussed openly by countless people thanks to the wonder of twitter, Facebook and many other social media channels.

The caveat?  If you are going to share the diagnosis, share it fully.  Please don't choose words like aggressive in the same conversation when explaining the mammography showed nothing but the sonogram found the tumor.  To me, I read lobular breast cancer which is hard to see on a mammography and the word aggressive means high grade, late stage.

I'm left with questions and when I understand the underpinnings of this disease to whatever small degree I've learned via my advocacy, I can't help but follow my human nature.  Speculation.  The science geek in me is speculating which makes me, too, a guilty gawker.  I would have loved to see this turned into a real teaching moment.  Talk about dense breast tissue.  Talk about the limitations, in some cases, of mammography.

The amount of misinformation being bantered about regarding breast cancer is staggering.  Early detection.  Better imaging. And yet, absolutely no progress in stopping death.  At least none to really speak of.....  The truth isn't tied in a neat pink bow. The truth is messy and underneath that pink ribbon, it's quite ugly, too.  We have to do something to stop our sisters (and our brothers) from dying of a disease that has had more money thrown at it from more sources than (speculation again) almost any, if not all, other diseases.

This is not a bash on Joan Lunden in any way shape or form.  It's more of a commentary on our society.  I feel that those in the public eye, those whose words and images come into our homes DO have a responsibility when sharing information about a disease diagnosis.  The information should be accurate and complete or it should not contain any medical details at all.

I do wish Joan Lunden the very best as she pursues whatever course of treatment she determines is best for her.  Every diagnosis saddens me.  And every death is like a dagger to the heart.


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Wednesday, June 11, 2014

THIS ONE'S FOR YOU, BARB

PostScript:  It wasn't one week.  On June 18th, seven days after this post originally appeared, Barb Bristow was stolen from us.  Eighteen months from mets diagnosis to death.  For however long the link works, you can find her obituary in the Lacrosse Tribune.  RIP my dear friend.  You will be missed by so many and you will live on in all of our hearts.  The very last line in her obituary says it all....

"Barb did not lose her battle with cancer; she lived graciously and courageously with it until the very end."

Indeed, she did.

JUNE 11, 2014:

I don't even know what to say.  Or how to say it.  But I must.

Those who write, who decide to launch a blog will relate to this feeling.  Is anyone actually reading this thing?  Who am I and why would my words be of interest to anyone, aside from, most likely, my mother?  If you write, you know.  If you read, you don't know.  I'll just say this: comments are great.  Or, if I had chosen a wordpress platform, they have the little like buttons which is another way of letting us know, "Hey, I was here, I read your post, I like what you are saying!"  Mostly, they let us know someone is reading which is great encouragement for those of us who continue to rant into cyberspace.

The first comment on this blog wasn't too long after I began writing.  I responded.  It's possible that person may still be popping over here from time to time.  The second comment on this blog was left by my friend Barb.  Barb Bristow.  I will remember it always.  I was writing about being "Stupid and Happy" which was advice dispensed by my dad.  Barb left me a note about her family life and how in her home, they referred to this phenomenon as Blissfully Ignorant.  It made me laugh. And we connected.

Barb is the first person I knew, who was reading this blog with any regularity.  Do you remember your first kiss?  I do.  Larry was his name and it was an elevator in a hotel in Florida.  Sounds really steamy.  I was about 13 years old and had no clue what the hell was going on.  It was all terribly awkward.  And now, my mom knows exactly what went on when my grandmother took my sister and I to Florida, three years in a row.  First blog friend holds the same place as the first kiss.  You don't forget, won't ever forget.  It's special.

Barb was okay and then, just like that, she wasn't.  One day, she alerted me to the fact that she was experiencing weird things and would be going to the hospital to have this checked out.  If my memory is correct, if it was going to be bad news, we were both hoping it was ovarian cancer.  Early stage, but definitely ovarian cancer was the preferable diagnosis.  Option B was metastasized breast cancer which we both realized would be far more difficult to treat.

I was devastated to hear that our worst fears were now her reality.  Barb was doing fine in the scheme of things, then treatments stopped working and a new protocol would begin.  This is life in the land of metastatic disease.  I fell off the planet for a good part of the year.  I completely lost touch with everyone.  Bounced on Facebook to stalk my kids a few times.  Visited twitter to make sure everything was okay.  Back to FB... wait, WHAT?  I see a note about the tough Barb Bristow finally getting home after a MONTH in the hospital.  Sucker punched.

Frantic, I tried sending a text message and then began to stalk HER son on twitter.  We exchanged a few messages and I'm guessing it was the following day he was given some news that would later be delivered by Barb to me and two other people in a group message.

She is out of treatment options.  She is at peace with this and hospice is now in her home.  Privately, I told her how much she means to me, how deeply I love her.  And privately, I cried a river of tears.

Barb was fine.

She was NED in August of 2011.

Metastatic in December of 2012.

Hospice in June of 2013.*****

****** I'm leaving this the way I originally typed it, since it's something that I KNOW my blissfully ignorant chemobrain error with my number issues would make Barb laugh right along side me.  It's not 2013, duh.....

It's 2014

I'm so saddened by this and I feel so horribly helpless.  On the sidelines without anything to offer.  So today, I ask anyone who may be reading this to hold Barb and her family close in your thoughts and if you are so inclined, in your prayers.

And Barb, if you happen to see this, know that you are surrounded by the love and light of more people than you can possibly imagine.  And know what I've already told you.  I love you, my friend, more than words can convey.


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Tuesday, June 3, 2014

THE ONE ABOUT THE NFL, MENTAL ILLNESS AND ADDICTION

I spent the month of October, for the most part, bitchin' about the NFL and their insistence upon that stupid Crucial Catch Campaign.  I've read the book, seen the movie and hailed an athlete for standing up for his cause during Mental Health Awareness Week which happens to fall squarely in the midst of Pinktober.  League of Denial, Pink Ribbons Inc. and Brandon Marshall.

Long story short?  Thank you, Dan Marino for joining the lawsuit against the NFL about failing to take care of its own when it comes to concussions which may lead to traumatic brain injury (TBI), which, in some may lead to something called TBI induced psychosis.

Mental illness is stigmatized like no other disease.  People tend to forget that a disease of the brain is no different than, oh, let's say a diseased kidney which may require dialysis or in extreme cases, removal of one kidney, sometimes both, thus requiring a kidney transplant.  What do we do in the case of a diseased brain?

We blame the person.  We view it as a character flaw.  We think it's in the mind of the person suffering.  Let me state this. Emphatically.  Mental illness is NOT a disease of the mind.  It is not a disease that a slap and a "Snap out of it!" will cure.  It's complex.  It requires tremendous skill to properly diagnose the disease.  Proper diagnosis matters.  A.LOT.

Only then, can a psychopharmacologist whose patience is endless and whose ability to play with the paltry amount of medications available, step in and (hopefully) come upon a cocktail that will work without turning someone into a zombie or adding tons of weight or a myriad of other lovely side effects.  And that presumes the person whose brain is diseased believes they have a problem.  Use yours for a moment...... the very organ that provides us with the ability to understand and reason is the one that needs treatment.

What if that part of the brain that understands the logic of needing medication is affected?  I'll tell you.  Medications are not taken.  It's called anosognosia (lack of insight).  It's a huge problem and it affects far more people than most of us realize. Last I checked, we can't transplant brains so it will continue to be a growing problem until something drastic is done to shake things up from the top down.  And by the top, I mean a FEDERAL bill directing the uniform care of those who live with mental illness.  That would be HR3717 and don't even get me started on the fact that a well thought out bill written by Congressman Tim Murphy who is a licensed, practicing psychologist has been "rewritten" for a purpose that I still can't understand.  People before politics.  Period.

In events related to the NFL's attempt to sweep the concussion thing under the rug, or better, blame the players for not wanting to leave the game, there is another storm brewing and it's all about addiction.  Addiction to pain medication.  Rather than go off on another rant, suffice to say, allegedly (using that word while biting a hole in my tongue), the team doctors tend to dispense these meds rather freely and then, once sidelined from the big field, players are left with their addictions.  To deal with on their own.  Mental illness and addiction are under one umbrella (I happen to disagree with this line of thinking but another day for that......) thus, as long as this is the case, the issues are two arms of the same problem.

I applaud Dan Marino for using his stature and standing within the league to open his mouth on the concussion issue.  I hope that this October, the pink ribbons on football fields across this country will be replaced with lime green.

I know that won't be the case.

Pink sells.

And the NFL has made this much clear:

Only one shade of green matters and it's the shade found in our wallets.

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