Tuesday, July 31, 2012

CHEMOBRAIN STUDY RESULTS ....

The Army of Women filled a study in EIGHTEEN days. According to the researcher who presented her results in the webinar embedded below, the normal time to fill a study would be about FIVE YEARS.  In other words, how much more proof do you need before you actually go sign up to be in the Army of Women database.

Not only will you learn about studies (in which you can select to participate OR NOT), you will have the opportunity to learn about the results of the studies in webinars like this one.  There is a Q and A afterward.  If you were on the call and you had a question, chances are you might have had your question answered.

For those of my buddies dealing with chemobrain, the study is fascinating.  It was done at Stanford by Dr. Shelli Kesler using software she developed for Lumosity.  There are no conflicts as she notes while she is presenting.  I was particularly interested in what Dr. Kesler had to say.  I was in a similar study and I utilized one of the other training programs she mentioned in the presentation.  My study is still open and recruiting.  You can take a peek and see if you might be interested.

To underscore my point about the efficiency of researchers utilizing Army of Women database to fill studies, this study is still recruiting.  It opened in August 2010.  Two years later, it's not filled yet.  Stanford?  Filled in EIGHTEEN DAYS.    You can admit it.... It's impressive.  Army of Women is impressive.  At the Dr Susan Love Research Foundation, they are conducting research, funding research and fast tracking research.  This would be a prime example of the latter.

Back to the important part.  The Results.  Her explanations are easy to understand.  The slides are extremely helpful. Three groups of women were studied and degrees of "issues" were found across all three subsets.  In other words, it's "CancerBrain" but good luck getting me to change my alter ego to @cancerbrainfog.  I am @chemobrainfog and I am blogging at Chemobrain: In The Fog.

The women were divided as follows:
  • Women with a breast cancer diagnosis without radiation or chemotherapy
  • Women with a breast cancer diagnosis who had radiation by NO chemotherapy
  • Women with a breast cancer diagnosis who were treated using chemotherapy
I was on the call scribbling furiously as Dr. Kesler presented some rather compelling information.  I never know whether to laugh or cry when I see a brain image and hear the researcher say, "In this case, the drug was (fill in the blank and it's always a drug that was part of my cocktail)."  

This is an in depth discussion.  While I'd love to offer a synopsis, you are better off bookmarking this video and listening to it when you can.  After all, I'm in the same damn boat..... Not exactly the best person to decipher information when the source is so easily accessed.  BESIDES, Dr. Love participated in the webinar and it was very inspiring to hear her voice. VERY inspiring, indeed!




In case there is an issue with this video.....the link on the Army of Women page can be found HERE.

Monday, July 30, 2012

AND I DIDN'T EVEN REALIZE IT ......

The past ten days have seen me in more than my fair share of dust-ups.  Between movie reviewers who spewed venomous words here and somehow managed to delete (not once, but TWICE) my very respectful, ON POINT reply from the site where HE posts, and bikini parades (which, by the way attracted a grand total of 39 people) and the misguided information about suntanning as a safe method of fulfilling our Vitamin D requirements, my head is spinning faster than Linda Blair's. I must admit, there was a point I felt this blog space could do with a bit of an exorcism....... Now?  Not so much.

Last Friday, I wrote about Angelo Merendino's photo exhibit in Cleveland.  That was another dust-up of rather epic proportions.  The nonsense here was amateur hour compared to what was going on with Angelo's beautiful art.  I stayed out of the fray and simply spoke my mind to the best of my ability. Hopefully I was able to cut to the heart of the matter. Hopefully I was being respectful of Angelo, of Jennifer and most importantly, of their love which is at the heart of the photography.

Who's heart did I reach?  Mom.  My Mom.

(Mom.... here's the part where you should just stop reading and know I love you and maybe you don't want to recall this stuff.......)

In 1987, when my mom was diagnosed with her first round of breast cancer, immediately followed by renal cancer, my dad never left her side.  He was with her for every appointment.  When her surgical bandages were removed, the doctor asked my mom if she wanted my dad to leave the room.  "Your dad saw what I looked like before I did."

Every chemo, every follow-up for (I think) ten years until she was finally released from the care of her oncologist, my dad was by her side.  Her records were kept in an orderly and meticulous fashion.  By dad.  In 2007, when she was diagnosed with a new cancer in her other breast, my dad had just died three weeks earlier.  I had just completed my final surgery two weeks before that...... Then she got the call.  Something they were "watching" had "changed."  I went with her for her stereotactic biopsy. She came out of the examine room in sunglasses.  I knew why.  My dad should have been in that waiting room.  Not Me.  And, my dad should have been with her when she got that phone call.  Instead, I was beside her in the surgeon's office an hour later.  It should have been my dad.  Not Me.  Let's just say that 2007 was kind of a really sucky year.  REALLY.

Last Friday night, at 11PM, I found this message in my inbox.  It was from my mom.  She had just finished reading the blog and in her words, she was able to see this from both sides.  Except, she wasn't talking about the sides between Angelo and The Gathering Place... she was referring to Angelo.  Just Angelo.  How she appreciated the way he cared for Jennifer...... it reminded her of what my dad did in 1987.  And then, she switched roles and stepped from the role of being cared for to the person with the broken heart.

From Mom.....


"I can see this from two sides of the fence.  Angelo is an amazing man and only makes me realize all the more everything Dad did for me.
True, I was lucky to survive with the support of a husband that was willing to give up everything to see me through.
He loved me through it all.  I do not have the answer to why I survived and his wife did not.
On the other side of the fence, I know first hand what he is going through.  Losing the love of your life is losing part of yourself.
Please convey to Angelo my thanks for being the man he is, and helping me remember the kind of man Dad was.
What a wonderful tribute to Jennifer.  I don't really understand what TGP did, but I know for sure, Angelo's heart is in the right place."


My dad's devotion to my mom was unending.  The love Angelo displayed for Jennifer as he held her up throughout her illness struck a chord with my mom.  His shattered heart stuck a chord with my mom.  The photos struck a chord with me on such a personal level.  I recognize those gowns, I recognize those exam rooms, I recognize those hospital beds.  I recognize the outside of that building.  I was in those gowns, those rooms, those beds.  Like my mom, I too, don't know why I am here and so many others are not.  The guilt of NED while others are dead or dying......

I reached a pretty gigantic milestone on Friday.  Those of us who have been burned by the words, "You Have Cancer," never forget "those" days.  The dates.  Whether we choose to acknowledge them or not seems to be yet one more thing we can debate ad nauseum.  The bottom line?  Friday, July 27, LAST Friday.... the line was drawn in the sand.. the line that divided my life into two distinct parts.  July 26th, I was BC.  Before Cancer.  I was up for twelve hours before it dawned on me..... "Whoa.  Six years ago today you were sitting in one of those gowns, in one of those rooms...."

I've been living "in the fog" and it would appear I will continue to live in that fog.  And it's okay.  It's taken an entire year of writing and volunteering and meeting so many wonderful people to finally bring me to the other side of the calendar: Officially AD.  The simple fact that I didn't even REALIZE it was a day that holds such tremendous significance in my life until 7PM, made me realize something far more important.  I have truly embraced AD.  Indeed.... I am:

Adamantly Determined

AD.  It IS officially here.  Step out of my way because I'm not leaving any time soon.  Not until I see an absolutely

Astonishing Difference

No, it's not here.  YET.  But I AM Here.  Determined......

Adamantly Determined to see an Astonishing Difference.  




Friday, July 27, 2012

THEY CHOSE THE LOVE, NOT THE BATTLE

It’s opening night in Cleveland.  Part Two.  Although this is not the original venue for the breathtaking, heartbreaking and poignant photography of Angelo Merendino, most all will agree it is a more appropriate venue.

While it isn’t my intent to focus on the past, I’d be remiss if I failed to mention that something did happen.  Angelo’s exhibit, which I had the absolute privilege of seeing in NYC this past January, is a photo documentary of a love story at the deepest possible level one can imagine.  The Battle We Didn't Choose.  Angelo’s wife, Jennifer died on December 22, 2011 of metastatic breast cancer.

Why do I keep hammering away at the word “metastatic” instead of just saying “breast cancer?”  Metastatic disease is what kills.  It is underfunded, under-researched and those living – yes, it is possible to live many years with metastatic disease -- often feel left out, forgotten, lost beneath the sea of pink ribbons that permeate our global society.  Angelo’s photographs chronicle Jennifer’s life, their life with, and Jennifer’s death from METASTATIC breast cancer.  The photography is not pretty.  It’s beautiful.  And it’s also the reality of the ugliest part of this disease; the part of the disease shoved aside for too long.

They are the women and men who live each day hoping that research will catch up before the disease takes over.  Before they run out of treatment options.  Before they die.  Jennifer and Angelo lived with that hope, but theirs was a hope underscored by a palpable urgency.  Lest we EVER forget, Angelo’s photos are a poignant reminder of that truth and of their reality. 

As an artist, Angelo understands the subjective view each of us will take away upon seeing the photographs.  Through his lens, Angelo saw how his wife was “so brave, so courageous and fought with such grace.”  However, others, looking through the prism of their own experience, may see pain, suffering, tragedy or fear.  For me, the camera doesn’t lie.  I see reality.  An irrefutable, undisputable reality.  A reality that exists for many.  A reality for those whose disease is an inconvenience, a stain on the ribbon.  It shines the light on those constantly being pushed into the darkness because their reality destroys the illusion of hope.

The Gathering Place (TGP)  in Cleveland, OH invited Angelo to display his photography in their gallery.  Invited.  As in: They.Asked.  He agreed and he submitted all of the images he planned to use for prior approval.  He did all of this at his own expense, including the opening night reception he hosted.  TGP was the beneficiary of the advance publicity.  After one week, some patients and families who frequent the center found the images upsetting.  A decision was made by TGP to halt the exhibit (immediately and abruptly I might add) and a public statement was issued.

I do not have metastatic disease nor do I run any sort of support center, but I can appreciate how this would be the predictable response of many who walked through the doors of TGP seeking support and comfort.  Angelo was nothing but gracious.  He understands how these photos might upset others.  He quietly accepted their decision.

The world of social media, on the other hand, did not respond as quietly……Or for that matter, as graciously….. if you follow this blog with any regularity, you might recall some of the inappropriately hurtful remarks hurled at me.  This, however, is a private blog.  TGP is a public, not for profit entity.  Angelo’s story was being followed by many in the months leading up to today.  All it takes is for one person to see something on a social media site and the ripples begin.  No one was more surprised by the show of support, by the sheer numbers of people who began posting on Facebook, tweeting and blogging than Angelo himself.  This is where the love of friends and the kindness of strangers began to pour in to honor Jennifer and offer support to her grieving husband.  Ironically and unwittingly, Angelo was suddenly in the center of A Battle HE Didn't Choose.

Stop.  Breathe.  Think.  Take a moment to remember this isn’t just any photographer displaying his work.  This is the art of a caregiver, a husband, a man who was deeply in love with the woman in the photographs.  This is the photography of someone whose heart was shattered as he watched his beautiful wife slip from his life, taking her last breath on him and taking with her, all of their dreams for what should have been a future filled with promise.  This is the body of work of someone who remains grief-stricken by what is still so raw:  His wife’s death.  Jennifer Merendino.  Just seven months ago.  In “grief time” that equates to mere seconds when you are the one who is sitting in that grief chair.  Others, no matter how close, cannot possibly understand this concept unless they have been in that chair.

The manner in which TGP has handled the situation is less than stellar and it has little or NOTHING to do with the actual removal of the photographs.  Bears repeating.  The less than stellar comment is NOT about the decision to remove the photographs.  It began with the poor judgment on the part of those in charge of curating the art on their walls.   In my most humble opinion, this lapse in judgment was simply a failure to truly think about all of those who enter TGP.  No one doubts the sincerity of their apology.  We ALL make mistakes.

However, admitting a mistake and then leaving Angelo on his own to solve a problem created by TGP is where, for me, it gets a bit dicey.  This is the only issue I believe to be discussion worthy.  Why?  We mustn’t forget Angelo was invited, he selected the art so it could be pre-approved and then took on the expenses necessary to set up a ten week exhibit.   “We are deeply sorry,” doesn’t really cover it for me.

What Angelo went through upon hearing the art was being removed is at the heart of the matter and that is getting lost in everything I am reading.  TGP is a place of support.  It’s a place where Angelo himself might have turned to for support. As such, wasn't he entitled to some level of compassion?  Angelo is firm in his belief that the photographs should have been taken down.  If it upset even one person walking into TGP looking for solace, that was one person too many.  Jennifer’s grace and concern for others, her legacy of love and caring is what is in Angelo’s heart.  He is a kind soul with the same deep concern for others.  Knowing his exhibit might be causing pain for others made it very easy for Angelo to put himself in the position of TGP and support their decision.  And he did so without a moment’s hesitation.

When the uproar began, repeating again, an uproar from the social media community, TGP was put in the position of having to defend their actions and in so doing,  Angelo was thrust into  the eye of a media storm.  To say he was overwhelmed is an understatement.  Thankfully, friends of the couple have stepped in to help Angelo navigate the storm.  Angelo was adamant that TGP should not lose support as a result of their decision and was concerned by the volume of negative comments that he was seeing online.

Abbey who is a part of the twitter #bcsm group I often speak of in blog posts, knew Jennifer through their support group. With her knowledge of the situation and a background in corporate communications, she worked beside Angelo, who was determined to frame his message so that there could be no mistake regarding his ongoing support of TGP despite this unfortunate turn of events.  Media inquires poured in and Angelo limited his contact making sure this did not turn into a circus.  This was about the exhibit, about honoring Jennifer, about finding a new venue.  There would be no negative remarks directed at TGP.

Another friend, Janiece, an accomplished attorney who also met Jennifer in a support group, has been providing Angelo with her assistance, pro-bono, hoping to bring the situation to an amicable resolution.  Many other friends of the couple as well as many who never met them but have followed their poignant journey via their blog and Facebook pages have embraced Angelo as this new chapter has unfolded.  Gayle Sulik will be including some of the photographs of Jen in a section she is adding to Pink Ribbon Blues when the paperback version is release in a few months.  Several blogs have posts about Angelo and Jennifer. Facebook is filled with comments of love and support.  Friends and strangers have run to his side to do for him what Jennifer would have done for each and every one of them.

Yet, there remain many practical issues and TGP should acknowledge some sort of moral obligation to help Angelo, if not from the standpoint of an organization whose actions created additional unexpected and unnecessary expenses, then from the standpoint of someone who is simply worthy of their support as part of TGP community.  And then, act on that obligation.  Being deeply sorry, admitting an error in judgment, and abruptly removing the photos from their gallery for Angelo to retrieve is simply not enough.  This is a place of support and their actions have shunned a man who is still living with tremendous pain and grief – actions which have only added to the emotional toll this situation has taken on him.

We are all aware that caregivers have their own unique set of challenges.  Angelo’s life was in an extended holding pattern from the moment  Jennifer became ill.  As her health continued to deteriorate, more and more of his time was spent at her side.  Now, he is left picking up the pieces of his broken life.  His career has to be put back on track.  I have no doubt Jennifer's treatment and care put a severe drain on their finances.  When public transportation is replaced by cabs because Jennifer was too weak to get on a bus or a train, and meals were brought in because there was no way a trip to the grocery story was physically possible, costs mount very quickly.

I have not followed the stories, the comments, and the backlash in their entirety.  I’ve read a few of the statements and it was troubling to have heard there were actually people accusing Angelo of somehow creating the social media backlash against TGP, presumably with a self-serving motivation.  I met Angelo briefly in New York City at that gallery event in January.  What I saw was a man motivated by love to do something that would impact the lives of others in a positive way.

I did not know Jennifer but the number of people present at the exhibit told a story in and of itself.  One didn’t need to know Jennifer personally to realize she was an extraordinarily special person.  Part of Angelo's insistence about maintaining good will no matter what happened with this particular exhibit was Jen, "She always saw the good in people and that's the way I will continue to live my life."  What a pure legacy of love shines through Angelo's words.

What’s next for Angelo?  He is grateful he has another venue despite the emotional upheaval this has caused.  Convivium 33 Gallery in Cleveland very generously stepped in to  house the exhibit for a four week run, July 27 through August 26. TGP had asked Angelo to display the photographs for ten weeks.  This raises many questions.  Now that there is another venue, some are saying, "What's the big deal, the art is being displayed."

Here's the thing:  Can TGP or any of its supporters help find another venue for those other six weeks?  Is anyone willing to step in and help with the additional costs associated with moving the art to the new venue, the costs associated with tonight's second opening reception, the fact that Angelo traveled back to Cleveland from NY yesterday to retrieve the exhibit from TGP and re-install it at Convivium 33 in time for tonight’s opening. These unexpected expenditures, insignificant to some, have caused Angelo an unnecessary and somewhat troublesome financial burden.  Repeating myself…. He’s working to put his career on track while he is doing many other things to honor Jennifer.

In that regard,  I’ve learned  that Angelo has set up a foundation in memory of his beloved Jen.  The Love You Share is awaiting approval of 501 status, but the organization has been established.  When TGP offered to host Angelo’s work, the intention was that the exhibit would raise money for both TGP and The Love You Share.  The mission of the foundation is to provide direct and tangible help to those in need.  Initially, this will include funds to cover transportation costs and gift cards to markets like Fresh Direct where groceries are delivered right to one's door – small things that make a huge difference.

Because that’s what Jennifer would have done for others…. Because that’s who she was..... And now, her legacy will live on through Angelo’s efforts.

The Love You Share…… sharing Jennifer’s love of others by touching them with grace and compassion and yes,

With Love.


Note:

I spoke to Angelo before I wrote this piece.  I wanted to be certain it was okay with him for me to write about this.  I believe this is an accurate portrayal of events based upon that conversation and the information he sent to me.  


I hoped he would have the opportunity to read this before publication.  Angelo has been on the go since we concluded our conversation.  If there is the slightest inaccuracy or anything within this entry that is not to his liking, it will be corrected or removed as soon as I have the chance to speak to him.


I thank you, Angelo for trusting me to share your story with those who read this blog.  I'm truly humbled.  I hope I have captured the essence of Jennifer based upon what you shared with me and what I saw when I looked into her eyes in every one of your beautiful photographs.  After all, this is about Jen, about your love and about her legacy.


AnneMarie

Thursday, July 26, 2012

SCIENCE BASED MEDICINE; EVIDENCE BASED SCIENCE - SMOKE, MIRRORS & SNAKE OIL - NOT WELCOME HERE

VIDEO ALERT:  THE TIMES ARE ALL MESSED UP.... NOW, MATH BEING A HUGE CHEMOBRAIN ISSUE, I CAN'T SIMPLY JUST ADJUST THE NUMBERS!  I PROMISE TO FIX THIS.... MEANTIME, THE ENTIRE VIDEO IS NOW EMBEDDED IN ALL THREE SPOTS....  THE SHORTENED VERSIONS MAY BE EASILY FOUND BY CLICKING THROUGH THIS ONE.  IT WILL TAKE YOU TO THE MSK SITE.  MY APOLOGIES!  WHEN I EMBED A VIDEO, THERE'S NO WAY TO PLAY IT AND DOUBLE CHECK UNTIL THE POST GOES LIVE.  THIS WOULD BE AN UGH MOMENT SINCE I'D EXPECT NO ONE IS GOING TO SIT FOR AN HOUR AND LISTEN TO DR. NORTON ALTHOUGH, I WOULD SAY, HE IS QUITE ENGAGING!!!

I BELIEVE THE TIMES ARE NOW FIXED..... I HOPE SO.....  IF YOU GET THIS IN A FEED, IT SHOULD HAVE BEEN RESENT.

I'm going with Science Based Medicine.  And the science has to be based upon evidence.  Proven evidence or that which can be proven to a reasonable certainty when lives might be at risk.  Aha!  An angle.... a caveat... a way to backpedal....  I hear you.  But no.... what I mean is when the only way to truly prove something works would be to withhold it from people who might benefit.  Those are the circumstances under which I was listen to "observational" studies and give them due deference.

I wholeheartedly embrace integrative medicine.  I listen to alternatives but there is a difference between alternative and integrative.  I rely primarily upon Western medicine.  I appreciate the introduction of Eastern medicine into a holistic treatment approach.  I do not buy into things that I know to be harmful just because it's being repackaged or reworded. This goes back to the "getting vitamin D from the sun debate" and I'm firm in my belief.  Prolonged, repeated exposure to the sun places us at risk for developing skin cancer.  Tanning salons are not safe.  I'm still hearing from people who are trying to convince me I'm wrong.  They are entitled to their views.  I happen to disagree.

Despite all of the studies I've been fed,  I'm going with Dr. Larry Norton.  Memorial Sloan Kettering Rock Superstar. Entertaining.  Self deprecating.  Humorous.  Mostly.... just damn plain brilliant.  I mentioned I was at a presentation he gave back in March.  It was in a prior post somewhere.  Now, I am able to embed the videos.  They are neatly broken into three segments.  I HIGHLY recommend listening to the third one if you don't care to listen to any of the others.  He explains how to be a successful patient.  That's really excellent.

Under the first two, I am adding a bit of a guide indicating what is being discussed and the time point at which the topic may be found.  Bookmark the links.  They are well worth your time (when you have the time---IF you can find the time). He is brilliant.  He doesn't talk AT you.  He's not a doctor with a God complex although he surely has the smarts to sit on that high horse.  I suppose that's part of what makes him so spectacular.

Just as I was setting this up to post, something hit my medical news feed.... What appears below is information from Surgical Oncologists at a Symposium this past April..... Fits with my topic.  Real Science and Cold Hard Facts.  Evidence. Numbers don't lie.  Statistics can be skewed but Numbers.Never.Lie.

PART 1: INTRODUCTION AND DRAMATIC CHANGES IN THE UNDERSTANDING OF CANCER.


2:10  Science is evolving at a more rapid rate than ever before in history
5:00  Modern concepts of cancer understanding
9:30  What makes cancer cells go rogue


PART 2:  QUESTIONS AND ANSWERS


14:00    Tumor marker tests and some foreshadowing of what was to come with Choosing Wisely about these tests
17:30    Scanxiety.  Shouldn't the patient decide whether the anxiety of the test or the anxiety over NOT having the test will be worse?  Suffice to say, based upon his feelings and my knowledge, I will be insisting upon the tumor marker tests despite the guidelines of Choosing Wisely, specifically #4 on this list.  The example cited about early discovery of bone mets is enough for me.....
20:30    Not enough metastatic research and indicative of how little society values research in this area.  THAT is troubling to hear.
28:30  Mammography is ESSENTIAL but it's not "superlative" test.  MINIMIZE risk of dying of breast cancer.  No use of words prevent or cure anywhere to be found.
29:45  Possibility of "risk adjusted screening" based upon individual factors
31:00  Two most important things to reduce risk-No HRT and Good BMI.  "It's about how much fat is in your body, not how much fat is in your mouth."  Book recommendations, Michael Pollan's In Defense of Food and Rules for Eating.  No HRT and proper body weight can reduce risk by 1/3 in post menopausal women.
34:15  DCIS and treatment
34:15  Who has more estrogen in her breast: an 18 year old or an 81 year old?
40:15  Triple negative breast cancer
40:15  Two areas of research in TNB
48:00  How long should women stay on aromitase inhibitors
48:00  The tamoxifen story
48:00  Bone loss from aromitase inhibitors
51:00  Vitamin D3 and supplements.  D3 is not a supplement, it's a "substitution."  and.... "Obviously, you don't want to go to sun tanning parlors."  AHEM  and yes, that would be all about Bikini Wars where I am about to close the comments.  
58:30  Aspirin for cancer? 

PART 3:  HOW TO BE A SUCCESSFUL PATIENT


1:00:30  Twelve minutes of pure genius interspersed with humor and tragedy.  Listen to it all.  In its entirety.  Trust me on this: You will not be sorry.  It's a guide book for the ages.  VHI Behind the Music, Sloan Style.  It's MSK: Behind The Treatment .... Pure, uncut and pitch perfect.


AND NOW....The final word on tanning salons (for now):


April 18, 2012 (Orlando, Florida) — Although the dangers of indoor tanning beds and melanoma risk are strongly buttressed by scientific data, public recognition of the danger remains low. The Society of Surgical Oncology (SSO) is the latest organization to push for an end to the cosmetic use of tanning beds.
A session here at SSO 65th Annual Cancer Symposium constitutes a step toward what is expected to culminate in a position statement expressing the society's strident opposition to the use of tanning beds.
The session was moderated by Jonathan Zager, MD, from the Moffitt Cancer Center in Tampa, Florida.
Cancers of the skin make up nearly half of all new cancers in the United States, with more than 3.5 million cases diagnosed annually. In the past 3 decades, melanoma-related mortality has risen in the United States by 690%.
The scientific case against tanning beds is strong. Of note, a recent study linked tanning-bed use during adolescence and early adulthood to a sharp increase in the risk for melanoma (Int J Cancer. 2011;128:2425-2435). Another study, of nearly 1200 melanoma patients, presented at the 2012 American Academy of Dermatology annual meeting, provided even more convincing evidence linking indoor tanning to invasive cutaneous melanoma.
Debunked but still popularly accepted benefits of tanning beds include increased sex hormones, dental cavity prevention, promotion of bone regeneration and repair, reduction in breast and colon cancer, and prevention of diabetes.
The dangers of tanning-bed use have largely gone unrecognized by the general public and by legislators. Legislated banning of the cosmetic use of tanning beds exists only in Brazil and, as of 2014, New South Wales, Australia.
In the United States, the tanning industry has lobbied aggressively to prevent legislation to curb tanning businesses and tanning-bed use. In 2012 alone, 26 bills intended to curb tanning-bed use were introduced at the state level. Nearly all were defeated.
The push to change public opinion concerning the use of indoor tanning beds faces a formidable battle. The indoor tanning business is a $2.6 billion industry in the United States, according to Dr. Zager.
Each year, 30 million Americans acquire or enhance their tans using ultraviolet (UV) tanning beds. The majority are teenaged girls, who visit tanning salons 20 times or more per year, on average.
In a 2009 study of the 116 most populous cities in the United States, tanning businesses consistently outnumbered Starbucks and McDonald's nearly 2 to 1.
Legions of tanning-bed users are motivated by the belief that a tanned body is a healthy body. This belief stems back almost a century. "Much of the blame goes to Coco Chanel, who made the tanned body a fashion desire," Vernon Sondak, MD, from the Moffitt Cancer Center, told meeting attendees.
The use of UV radiation in the pursuit of health is regrettably paradoxical, according to Samantha Guild, from the AIM at Melanoma Foundation in Richmond, California. She pointed out that UVA, UVB, and UVC are class I carcinogens, along with tobacco, arsenic, asbestos, mustard gas, and plutonium.
As a first step in crafting a position statement, the SSO has begun to gather comments from its membership concerning the action points and wording of the statement. The goal is to develop a position statement based on science, directed particularly at people younger than 18 years of age, that can be drafted within the year.
"We are not talking about living in a cave. We can enjoy the sun and still be sun smart," said Dr. Sondak.
Position statements against tanning-bed use have already been issued by the American Academy of Dermatology, the American Medical Association, and the American Academy of Pediatrics.
Dr. Zager and Dr. Sondak have disclosed no relevant financial relationships.
Society of Surgical Oncology (SSO) 65th Annual Cancer Symposium. Presented March 9, 2012.




    Wednesday, July 25, 2012

    WHY BOTHER? THIS IS WHY .....

    Why bother?  Frankly, I am exhausted.

    Last Monday, July 16, I wrote a blog questioning a bikini parade and someone promoting Vitamin D from exposure to the sun as the cure all.  Caused a dustup.  One anonymous person left a nasty comment and a couple of other people left opposing commentary.  There are 60 comments under that post.  Granted.... I try to respond when anyone comments so only half of those came from others.  There was a new comment yesterday.  The D3 debate continues.  The bikini supporters?  No so much.

    Then, it continued as the week progressed.  One year ago, could I have possibly imagined I would be here?  Feeling like a lightning rod.  I can guarantee I never expected to be doing THIS.  Yet.... here I am.... one year after publishing my first post.

    I made a conscious decision to speak my truth and to stand up for my beliefs.  If I'm going to blog, I'm going to be truthful and honest.  Otherwise, why bother?  I'm not going to shy away from views that may be unpopular.  After dealing with tons of pushback, from what seems to have been every conceivable angle, I remain committed to accepting the fact that we are all different and as long as we are moving toward a common goal, there is no right or wrong way to do cancer.  There is only the way that works for the person dealing with the disease.

    There IS, on the other hand, a right way to do research and a right way to help those who need support.  I'm not going to do the broken record on this matter, yet again.  I think, I HOPE after the ongoing discussion about Pink Ribbons Inc my feelings are clear and that we all realize there is only ONE page and we all belong on that page.

    To conclude this saga, let me just say that my very respectful remark responding to the offensive comment left here was removed from the movie website.  TWICE.  He got to spew here, call me all sorts of names and when I went to his "space" to respond to some of what he spewed, he took my remarks down.  I had a feeling that might happen which is why I posted the reply on this blog, too.  My rational words in response to a lunatic made him look like more of a well..... umm... a lunatic.  I'm done with him but, having said all of that, it was worth every single ounce of frustration, irritation, aggravation and every other --ation.

    You see...... a note was left on one of those movie websites and THIS is why I step into these situATIONS.

    The film is near and dear to my heart. I was honored to be one of the Stage IV women interviewed in it. I'm not exactly sure what a "sobering image" means to people but I'm guessing this comment is reflective of only having seen what advanced cancer looks like in the movies and on sensationalized television programming. Perhaps the reviewer would be interested to know that one of the women interviewed died less than a year after the filming. (Mari- she is the one in the trailer who says, "We're living, we're human beings. We're not just a little pink ribbon.") You don't die from breast cancer unless it is Stage IV, and yet we are so rarely acknowledged because let's face it= we kind of suck as marketing tools for the optimistic "you can beat it" propaganda that has been so well fed to us as a culture. 

    I want to add that the purpose of the film was to "change the conversation". The fact that there is discussion now about this issue where there was not much before, tells me that the film is doing its job and that we are indeed moving in the right direction. Thank you AnneMarie for "getting it" and speaking out on our behalf.


    Thank YOU, Sandy Kugelman for lending your voice to such an important body of work.  I'm so very sorry to hear that Mari died.  I'm sure everyone who reads this blog joins me in extending our most heartfelt sympathies to your entire group and to Mari's loved ones.

    I don't even know how to begin to express my gratitude to you, Sandy for acknowledging me.  Your words have meant more to me than I can possibly ever convey.

    To answer my own question.... Why Bother?  Sandy's words are the answer.  THAT'S Why.

    Tuesday, July 24, 2012

    I MAY BE A LIGHTNING ROD, BUT I'M NOT --REPEAT ***NOT*** --A PUNCHING BAG

    I don't want to moderate comments on this blog and I don't really like to delete things either.  I pride myself on being willing and able and absolutely desirous of hearing all points of view.  I never EVER expected to be put in a position where I feel I'm being bullied.  That all changed last night.

    The post that was up yesterday touched on a mess of things that were all somehow connected.  It was up from Friday and remained up until this morning.  Late last night, there was a comment that was inconsistent with the manner in which I choose to conduct things "in my room." My friend Chayra beautifully referred to our personal blogs as our private spaces.... the places where we retreat to collect our thoughts and wage intimate battles that observers or even other members cannot fully appreciate.  She was specifically referring to "us" as the community of breast cancer patients.

    One of the movie reviews for which I provided a link contained this comment from the man who reviewed the movie.  It was on HIS review page in response to the pushback he was receiving from many women.  I left a respectful comment (and very short.... yes, hard to believe but....) and I replied to a woman who jumped to his defense.  That reply was also written very respectfully.  I don't name call.  I don't bully.  I may get sarcastic HERE, in my own room, but I always attempt to take tremendous steps to use care when I'm in someone else's arena.

    This is now a zero tolerance blog.  I will listen to any and all points of view.  That will not change.  All voices are invited to share in the conversation.  However, the moment anything reads like an agenda, there's a better than 95% chance the comment is going to be deleted.  And, the instant a comment contains language that is demeaning to me or anyone else for that matter..... or belittles me...... or calls me names like a "miserable little troll" or accuses me of being "blinded by ideology and hatred" and further insults me by stating that I don't care about breast cancer victims (his word not mine) a fraction as much as the Komen people...... that's pretty much 100% guaranteed to be deleted.

    Politics aren't tolerated.  Ultra liberal, Uber conservative.  All Welcome.  Devoutly religious or decidedly atheist.  All Welcome.  Name callers.  Closed minded, ignorant people pushing their agenda down my throat.  Not in my room.  Not happening.  Anymore.  I'm leaving this comment here in case The Guy decides to delete his words from yesterday's blog. This is my reminder of what I will no longer tolerate.

    This comment broke every rule.  He talks politics and religion.  He uses words that are offensive to women everywhere. Words like hysteria and shrill are nasty words.  He claims we are mean spirited because we care more about abortion than breast cancer.  He claims whenever a film like this is made, "a little bit of research is in order."  To that I say, "Yes, research is in order and YOU have failed miserably in your research."  Dude:  This movie was already released months before SGK shot themselves in the foot with their Planned Parenthood debacle.  And, FYI, when you donate to PP, you can DESIGNATE that your donations go to fund mammography screenings.  Where did you dream up the rest of the shit you simply spewed with such venom and directed it all at me??

    I'm not blinded by anything.  I stand true and proud.  I stand up for the women with metastatic disease.  The women that Komen chooses to ignore.  Ask any one of them..... Ironic, considering that is WHY Susan Goodman Komen died, don't you think?  Anyway...... this comment almost sounds like it came straight from someone in Komen's camp except that I'm not deluded enough to thing that Komen is paying any attention to what I have to say.  But damn if it doesn't sound like a promo piece.....

    Rather than answering this nasty little man in my own room, I did reply to him at the place where his review was published.  The reply I posted appears below his mean and hurtful words.  Karma is a bitch and this guy will get his.  Not wishing anything on anyone, just remembering some of the wisdom of my dad.  In this moment, it's nothing profound like some of the other dad-ism's I've shared.  This is from the guy who grew up on the streets, went to school, became an attorney, raised a family and was EXTREMELY protective of all of us.  Right now, dad's saying, "Walk away, He'll Get His." And you know what, my dad was always right.  And I know he's right this time, too.

    Without further adieu, yesterday's delete-worthy comment, riddled with stupidity, inaccuracies and the words only a puppet or someone who is drinking the pink kool-aid could possibly summon:



    The fact is I did not, in any way, belittle or say anything disparaging about cancer victims in my review. My jabs were pointed exclusively at those whose hysteria about the pink ribbon campaign I found so bizarre. The movie was a dishonest hit-piece on Komen, something I called the filmmakers out on. It’s they who are injecting their bias into their film, more editorial than documentary. Where does it say film reviewers can’t inject their bias in a review? The filmmakers sure did! Barbara Brenner posts over at the ‘De-fund Komen’ FB page. No bias there, I guess! I suspect many involved in the film have been involved in attacks in Komen and will be working oon exposing that. The guilt-by-association card in the film was obvious. Juxtaposing shady charities with Komen, the most trusted, big-hearted, and successful nonprofit organization in America is deceitful and mean-spirited. I included the link because it’s Komen that is the victim of mean-spirited film made by women who care more about abortion than they do breast cancer. Komen was founded in 1982 by Nancy Brinker in honor of her sister Susan Goodman Komen who died of the disease in 1980. Ms Brinker has travelled the world, raised Billions for the cause and has received the Presidential Medal of Freedom, America’s highest civilian honor. Meanwhile a bunch of miserable little trolls feel the need to post hateful comments on any less-than-fawning review of the film (mine’s not the only one – it’s not a particularly good movie). Whenever I see one of these agenda-driven docs, I think about what I’m not being told. I know dishonest filmmakers like Michael Moore and Ms Pool expect critics to simply regurgitate the political points the film makes in their reviews but a little bit of research is always in order and in this case counters the film’s claims. Komen’s annual report is public and shows what a truly altruistic and honorable group they are. Komen is associated with conservative religious and pro-life groups and I suspect that’s real problem women like you have with Komen. They’re a privately-funded organization (unlike Planned Parenthood, which received $400 Million in annual Federal tax money) which raises their funds through hard work and good will. They’re entitled to do what they want with their money and associations and 88% of the billions raised goes straight to the cause. If you cared about breast cancer victims a fraction as much as the Komen people do, you might realize that you’re actually on the same team but you’re too blinded by your ideology and hatred of those who don’t see things the way you do.


    My response:



    Tom,
    I think it was highly inappropriate for you to leave the remarks you wrote here addressing several women as a comment on my blog where it reads as an attack on me personally.


    You may not have said anything disparaging about cancer patients in your review but to refer to me as a meaningless troll blinded by ideology and hatred is mean spirited.  I'm a cancer patient.  I advocate for others who are newly diagnosed.  I try to make sure that people simply ask the right questions before they pick up a piece of merchandise donning a ribbon.  I object to Komen for NOT researching OR helping the underserved to the degree that they could.  They are still raising awareness.  My ONLY gripe with Komen is that they have not moved with the times.  They have long since achieved their goal of making sure we are all aware of the importance of mammography.  The lion's share of the money is still being poured into awareness.  Why is it not going to research?  After all, the foundation was started because a woman died.  Metastatic disease killed Susan Komen.  Shouldn't the organization that bears her name direct SOME money toward helping others with metastatic disease?


    I'm sorry you have chosen to take what could have been a meaningful discussion and instead passed judgement on my politics, my religion and what you see as my lack of intelligence.  I don't discuss politics or religion on my blog... I stick to following the money... and it's not going to the right places.  If it were, we wouldn't be inches off the starting line after billions of dollars and decades of research.  I'm dissatisfied and disillusioned.  Where are the advancements?  Where are ANY meaningful results?


    Like it or not, as the largest breast cancer charitable organization in the world BAR NONE, Komen IS at very least partially responsible for the lack of progress .  They are holding most of the cards in the breast cancer gig.... They aren't acting in the best interests of any of us who've been diagnosed with this disease.  That's my gripe in a nutshell.  It's got nothing to do with being shrill or Debbie Downer or for that matter spewing hate.  It's got even less to do with politics, religion or the planned parenthood mess.  It's simple.  Komen has the name, Komen has the money and Komen COULD have advanced the research if they weren't so busy raising awareness.


    And for the record, I think I was extremely respectful in the comments I left here despite our oppositional points.  I think I deserved the same courtesy when you posted your remarks in "my" space. 


    FYI-I get the last word on MY blog.  Don't even try to leave a comment, Tom (and friends).  OUR conversation is over.  Bash me in your own space.  I'm not moderating anything so you will get a cheap thrill for the brief time the comment may be on the screen, but I promise, any further remarks by you will be deleted the second I get a comment notification.

    Extra hugs and thanks to my pals on twitter and Facebook for sending me cute pictures (which I will share when I'm not weary and exhausted) and wonderful words of encouragement.  My motives are pure and my actions come from a place of genuine concern for friends and loved ones.  I'm certain Tom can't say the same.

    Saturday, July 21, 2012

    LET'S CHANGE THE CONVERSATION, SHALL WE?

    After last week's commotion about the bikini walk and the debate over sitting in the sun and having people question WHY I (and many of YOU) have a problem with the sexualization of breast cancer, I thought it would be a good idea to put together the voices of some of those involved with Pink Ribbons Inc.

    Then, another commotion came into focus.  TWO different reviews of the documentary were written.  They were both by men.  I left comments and in one of them I was asked by yet another man, "Bitter much, AnneMarie."  I told him I was not bitter, just angry.  Today, as two young women are preparing to die, I share my anger, my sadness and my determination to see things change.  No.... I'm not bitter but I am highly offended by these reviews.

    I'm back in the mode of ranting.  About everything.  It's exhausting.  But hell, someone has to keep hammering away until the message is heard, understood.  Only THEN will I step away with the realization, "I tried and you can't fix stupid." Clearly, however, neither of these men attempted any level of understanding or they could not have possibly written such insensitive (and in places downright insulting) reviews.

    From Tom Stockman, we are "shrill" and "Debbie Downer-ish" ... oh... and yes, he includes a link and an address to encourage donations to Komen.  One must question Mr. Stockman's ability to write an unbiased review when he includes a link to donate to just ONE organization from the many breast cancer organizations out there.... How about equal time and exposure for oh, I don't know, let's say.... METAvivor or Dr Susan Love Research Foundation where they really ARE funding research.

    And from Joe Williams, you just have to love a statement like this:

    "Yet because the film doesn't contain a single sobering image of human suffering, the complaints about commercialization and insensitive language seem like much ado about nothing. After all, the walk-a-thons attract thousands of survivors who understand the gravity of the disease, and the Komen Foundation has helped raise hundreds of millions of dollars to study it."

    What?  He needed to see someone gasping their last breath for it to be real?  The walkers understand the gravity of the disease?  Let's ask my friend Donna Peach how she was greeted at a Komen walk where they supposedly understand "the gravity of the disease."  Hell, the VOLUNTEERS don't understand.  But the survivors/walkers do?  Yeah, right.  The metastatic patients are the stain on the ribbon. I defy anyone, anywhere to point me to ANYTHING to show me differently. Don't even GET ME STARTED on the comment about "Komen ..... raise(d) millions of dollars to study it."  Let's get a fact check on that from the late, great and tremendously missed, Rachel Cheetam Moro, shall we?

    A third commotion came into focus, too as Angelo Merendino's photo exhibit of his wife's battle with breast cancer that he chronicled so we CAN see "sobering images of human suffering" was removed from The Gathering Place where he was invited to display some of the images.  Gayle Sulik, author of Pink Ribbon Blues, explains it far better than I could ever hope to so I hope you will read about this on her blog.  I saw Angelo's photos of Jen in NYC back in January.  The very same evening, a 39 year old friend was in a nearby hospital.  As I was at the exhibit, she took her last breath and died of metastatic breast cancer.  Is that sobering enough?  I wonder.

    No?  How about the words from Angelo's website.... does this clarify things?

    "Sadly, most people do not want to hear these realities and at certain points we felt our support fading away. Other cancer survivors share this loss. People assume that treatment makes you better, that things become OK, that life goes back to “normal.” However, there is no normal in cancer-land. Cancer survivors have to define a new sense of normal, often daily. And how can others understand what we had to live with everyday?"

    Below are clips I found from different interviews about Pink Ribbons Inc.  Some of these clips may be longer than others but they are ALL worth a listen. Perhaps some of those who were in the "what's the big deal" camp may not yet understand "the big deal."  I hope the words of the women and men in the videos will have a better impact than I did. If one person who didn't realize how the pink ribbon has been a detriment to so many, shifts their attitude ever so slightly, it will have been well worth my time and your support.

    Listen with an open mind. Let's change the conversation. It's time. It's past time.... In fact, it's long OVER Time..... When reviews like those are what people are reading, when the true face of how devastating this disease can be is too "painful" to look at, it's imperative for us to raise our voices and expose the ugly truth.  We are not wrapped in a neat pink bow.

    I expect to leave this blog up through Monday.  While I do not normally post on the weekend, I'm posting this now.  On Friday night.  I will post new content on Tuesday morning.  I hope that gives everyone plenty of time to read the links I've provided and listen to each one of the clips embedded.  Take your time.  Let it ALL sink in.  All of these events/episodes/outrages are connected.  They belong in one blog entry.

    And, please keep two very special women in your thoughts.  They are in rather dire situations and I'm a bit distraught for them and for their loved ones.


    (Note:  If there is a brief period of foreign language, once the interviews begin, they are all in English....please don't click away........ )

     












    Friday, July 20, 2012

    METASTATIC BREAST CANCER STUDY

    23andMe.

    Did you think I was going to forget about my promise?  Did you even know I made a promise?  It's for the Stage IV patients.  One blog post each week, EVERY week, is going to be specifically for those living with metastatic disease.  There are enough blogs on that blogroll written by mets patients to bring out the Fearless Friend in each of us.

    This was quite an emotional week.  Monday and Tuesday were consumed with a fiery debate on this blog.  That's not the norm around here.  It happens.  Wednesday, I did my reflection of my first year of blogging.  Yesterday, it was about honoring my dad whose words resonated with so many.  I loved his quips and this was a favorite and turned out to be a big hit with many.  "Don't be so right you make yourself wrong."

    Today, it's about keeping my promise.  I'm going to guess many of those who are eligible to participate are already aware of this study.  Just in case, however, I'm throwing this out there.  If you know of someone with a Stage IV diagnosis, please send them the link to the study.

    23andMe is about our personal genetics.  I have not done my own personal genetic profile but I do have an issue with Beta Thalassemia and this website is the first place I have found with comprehensive and accurate information for those of us who do not have BT but are affected by inheriting a gene from just one parent.  (Mom's off the hook..... this came from dad.....)

    23andMe has teamed up with Genetech.  If you were taking Avastin on or before December 31, 2011 and have a diagnosis of MBC, you are eligible to participate.  A saliva sample is all that is needed although they would like a blood draw if you are willing to provide that, too.  This is not for a new treatment.  It's a study, not a clinical drug trial.

    If you would like to participate or know someone who might, please take a look.  I'm not selling hope or pushing anyone's agenda.  From where I sit, I just think the more people looking at information from as many different angles as possible, regardless of their own motivation, is the way to meaningful change.

    Here's the link to what they are calling the InVite Study. Many of the partners are names I trust (others perhaps, Not So Much but that's my own personal gig and I will share when I finish my due diligence).

    Please let me know what you think or if you decide to participate.

    For now, Happy Weekend to all.  And to all a Good Weekend.......


    Thursday, July 19, 2012

    FROM JULY 19, 2011 ..... LIFTOFF !!!

    And this is how it all began...... and this was posted on July 19, 2011.  It was my way of honoring my dad.  He died five years ago.  Today.  One year ago, this is what appeared in this blog space...... Taking it from the top....From the beginning...... This one's for you, dad.  Your wisdom has been a guiding force that will live on forever..... in me.... in my brothers and sisters..... in my kids and my nieces and nephews.  Your legacy.  Our family.  You taught us well.  I can't fill your shoes but I can follow in your footsteps.  Advocating for others.  I learned from a true giant.  I love you.

    July 19, 2011  Let the adventures begin:


    I have to come up with a snappy,

    Cut you at the knees,
    AM's Brain, drifting aimlessly....
    Shut up for the simple reason you don’t know what you are talking about….

    In fact..... you may be a moron, response. 

    It has to be short and sweet, to the point, somewhat biting without seeming biting.

    I am tired of people telling me “It’s in your head.”  I am tired of people telling me they understand.  It IS in my head and they DON’T understand.

    I feel like those old drug commercials.  I see an egg.  Perfectly shaped without even the hint of a crack.  Whoa.  Now I see it cracked open and sizzling in a frying pan.  My brain was an egg in pretty decent shape.  I’m not a rocket scientist or anything like that but I was quite capable of working a fairly demanding job.  My brain now resembles the egg in the frying pan, particularly as the white part starts to bubble up.  The egg stops the erratic movement when it’s cooked. Similarly, my brain stops jumping all over the place when I’m totally fried, winding down the day-which may or may not have been productive but regardless, I am just as spent.

    “This is your brain on drugs.”  Good campaign.  Not too sure it worked then or if it would work now, but the only drugs I take are legal and are prescribed for me.  The big, bad drugs are done.  I was finished with those drugs four years ago.  I am, however far from being done with running to and from one of the many facilities operated by Sloan Kettering in and around the NYC area.  At last count, I have had appointments for one reason or another in at least eight different locations since I jumped on the Cancer Bus.

    Most recently, I had an appointment in Manhattan.  Letting people know I would not be around on the day in question, despite the fact that I am a grown woman with adult children, we have come to a point in the instant communication world, where it has become proper etiquette to let certain people in my life know that I will be among the missing for a few hours.  Naturally, this prompted a very insistent, “Why, what for?” from every single person.  New York was in the midst of the first official heatwave of 2011.  My well intentioned family and friends were all compelled to share the weather situation.  I suppose they think I moved into a cave somewhere with no TV, no internet, no iphone and no window or door from which I could actually walk outside and FEEL the heat. 

    “I have an appointment,” which of course, is simply not a satisfactory answer.  The weather angle gives them a reason to pry for more information.  I do not want to discuss the reason for my trek with anyone.  If this isn’t bad enough, some of them kinda-sorta begrudge me because they tell me they understand.  And then, they push me to do the very things I just finished explaining cause me huge problems.

    And, in the very next breath, I am being told how I am making things worse for myself by just thinking about it or, even better than that, I am being told it will do me good to (insert any idiotic thing) because they just know this (idiotic thing) will be the magic bullet.  Feels very condescending but rather than make any further attempts to explain, I do this mental sarcasm Thank You Kindly Thing.  You know me well enough to also know I have already researched everything I could get my hands on…..  I’ve tried things on my own, implemented ideas I found from people who DO understand and, as of this moment in my life, I have limitations.  Period.  Constantly pushing me toward the very things that fall under “limitations” ….. well, then just stop telling me you understand… or that you are sympathetic.  

    Where I was?  The inquisition.  Worn down by the constant follow up line of questioning, I cave in so I can emerge from my aforementioned residential cave and go about the business of my day…. And that presumes I even have “it” to get started after being sidetracked from whatever I was attempting to accomplish prior to the onslaught of questions from the well intentioned.

    “I’m going for a neurocognitive evaluation.” I can sense the eye rolling, even if it’s a face to face conversation and an internal eye roll.  I listen to them as they tell me how they can never remember what they walked into a room for or THEY can’t remember names.   I laugh at the self deprecating jokes, “I didn’t have chemo, what’s my excuse?”

    I get it.  I’m at THAT age where this is happening to many of us.  Although I quite graciously accept AND VALIDATE their “I do that, too” it damn well pisses me off that most people absolutely refuse to accept my, “Yes, but this is different.”  The persistence upon their insistence they KNOW how to help is starting to get really irritating.  As for any form of validation?  I’m in unchartered territory and I can quite simply, Dream On……

    I know where I will find validation.  From others who are experiencing almost identical problems and whose lives are similarly changed, or from one of the small group of very brilliant minds who are researching what is happening or more accurately, no longer happening in my brain.  Some of you know EXACTLY WHAT I MEAN.  And some live with someone like me and have a real hard time understanding it.  Before acceptance, there must be understanding.  Few people have faith so deeply in another human being that they can accept without understanding.  This can, correction, This DOES cause many problems and creates relationship issues with spouses, parents, children, friends….

    So we are an isolated bunch….. but I know when I hear or read what someone like me has to say , I can’t describe my feelings (“thank GOD, it’s not ME”…. “There is a reason for this mess”) as they go to those subtleties, the things that have me nodding my head, delighted that someone else is taxing their brain to come up with a fitting description.  Totally in awe of their ability to capture the essence of this…..and thankful, so thankful….. THEY can distinguish the mess in my head from those well intentioned members of the “I do that too, crowd.”  

    My life is now in the same two parts used to express calendar years: BC and AD.  My own BC era is Before Chemo, Before Cancer, Breast Cancer.  Pick all, pick one, pick none.  Isn’t it BCE now?  Can you excuse me while I google what is “official” these days because yes, the calendar is of utmost importance at this very moment.  BCE goes with CE and BCE:CE will simply not stay in my head.  And, memory recall of stuff that’s been in my brain for a long time isn’t my problem.  I’m sticking with BC:AD.  What can I call AD?  All Done?  After Drugs?  How about “Anne’s Dumb-days?”  Working on it.  Lucky for me my cancer started with the letter B.  Gives me three things to refer to as BC. 

    Hey, shouldn’t things come in threes?  Doesn’t it work better like that?  Let’s see.  Eat Pray Love.  “Things always happen in threes.”  Actually, I did just have proper burials for three dead birds I found in my yard in less than a month.  Somewhere in the recesses of my brain I read movie titles, or was it book titles, or was it both, OR did I just think it and actually believe I saw or heard it.  What was I saying?  Oh yes.  Titles should be three words or less. 

    If you can give me another several hours, I will either come up with more “three” explanations or, I will get so damn frustrated, I’ll google every combination of phrases I can think of to support my hypothesis.  And while I'm at it, I better check to see what I have to do to perform an exorcism on my home in case those three dead birds is some sort of spell that was cast on me......Not before, upon opening my browser, I see on my personalized google page a news story with information from the FDA about silicone implants.  It’s as if someone else jumped into my body and will NOT allow me to stick with what I started to do. 

    Some evil thing invaded my brain, as I have absolutely no control over the internet detour upon which I am about to embark…. One that will undoubtedly consume a very large chunk of time as one link leads to another and another so I can get to the bottom of this silicone situation.  And my work, all with pretty stringent deadlines every one of which I am acutely aware, just sits untouched.  In fact, if I have a bad enough run, string together a bunch of days in a row like this, I may actually have to blow the dust from the top paper.  And the dusty paper is something government related that MUST be postmarked by 48 hours ago.

    But I’m obsessed over this issue with the breast implants.  My “gummy bears” don’t count?  (widely used nickname used for the type of implant I chose for my reconstruction.) That’s a different type of silicone.  PHEW!  Wait, I’m in a clinical trial?  Only 20% of women will have a problem…. OH, that’s for cosmetic surgery implants.  The stats for women with reconstructed breasts - 40-70%?  Mine are in exactly four years.  Odds appear I will be in an operating room at some point in the not distant future.  Is it only “pure silicone gel” or does that include my gummy bears, too?  If the gummies are in a clinical trial, I guess technically, they have no clue just yet.   Where the heck is the search page with the things in threes?

    That is a snippet of what happens in my brain.  Sometimes, I’ll jolt back and realize I went off on a tangent that had absolutely no connection whatsoever to my point.  None, Nada, Zip.  See how melodic things sound when they are in threes?  Othertimes, I’ll remember, generally days later, “Hey, I never did get to the point in that conversation….”  Or  “What exactly did I find out about this FDA nonsense?”

    I am not the same and I want to function in BC time.  And then I feel like a real ingrate which leads me to beating myself up for being cancer free.  I deserve a beat down with this bitchin' and moanin' over nonsense when so many are in the fights of their lives, FOR their lives.  And, that is not an abstract thought, it’s an In My Face reality as I personally know two women who are Stage 4 Warriors, neither of whom entered my life because our paths crossed in Cancer Land.  I met each of them under random, I know there is a great word that captures exactly how these women came to be a part of my life…DAMN IT….GOT IT… “serendipitous”  circumstances. 

    I am approaching the five year mark.  The first significant milestone.  Or is it?  Is it five years from when the surgeon did the biopsy and supposedly got clean margins?  Is it five years from the bilateral mastectomy which was two months after that?  Is it five years from the last chemo?   Oh no, I see another internet detour coming…….

    What in the hell was I trying to say anyway?  Give me a sec while I scroll up to read the beginning.  Oh yeah…..I remember now. The snappy answer:

    “Thank you so much for the validation.  I can’t tell you how much it means to have you understand that It IS in my head.”
    Naaaahhhh.  Too many words.  Will work with that and try to tweak it as time goes by.  In the meantime, I will now be late for my 11AM appointment.  Lost track of the time, forgot to set the alarm on my phone to remind me.  Gotta run.  Promise to tie up all the loose ends as this blog evolves into something, or more realistically, fizzles into cyber-nothingness.

    for dad......





    July 19, 2012..... I didn't crash and burn into cyber-nothingness.  Sweet Anna, my Visible Ink mentor.... "What is chemobrain and is there an audience?"  I should have her write the story of our first conversation!!

    And, for A.... one of those previously mentioned Stage 4 friends who died just at the halfway point between last July and today.  You are part of why I am determined to be heard.  Speaking loudly and in ways that others can hear makes me feel less helpless.  I couldn't do anything to prevent your death but I can surely shine a light on the truth.  For you, for Rachel, for Susan.  For all whose lives were stolen....  And for all who live with the fallout of the "good cancer" .....

    I'm not going anywhere..... unless it's to a bikini parade.... TOPLESS... just to make a point.