SORTING IT ALL OUT - HEADLINES AND HYPE

The San Antonio Breast Cancer Symposium continues through today and the official closing is tomorrow morning.  I've been glued to a twitter feed for days.  I've left the house to run errands (barely) and I've managed to maintain my weekly exercise/yoga routine (essential).  Aside from that, I'm walking around with a laptop in one hand as I prepare food or do anything else.  Including when I jump in the shower.  The laptop stays out, but it's there for me to read as I'm wrapped in a towel.  Here's where a shout out to the young man in the Apple Store is in order.  I just replaced my laptop and he convinced me to get a MacBook Air.  I can cradle it in my left arm as I'm doing other things.  I think my phone may be heavier.

Have I learned anything?  Yes.  Themes are emerging, headlines are being splashed, studies are being hyped and my head is spinning trying to decipher all of it in ways that I can understand.  Over diagnosis and over treatment was big on Tuesday. This has been a topic of conversation for months.  I found a good video which (if I recall) was a fair (as in even-handed) assessment taking all sides into consideration.  My take away.  We can cease and desist in perfecting imaging techniques. When mammography works, it really works well and when it doesn't do such a great job, perfecting it further won't really help those whose cancers are hard to see on mammography.  Enough with this need for earlier and earlier detection.  We got the early detection part down, we need to get to the biology of the tumors, to find ways to interrupt metastasis, prevent metastasis, prevent the disease altogether.

And that's where the splashy headlines began.  Anastrozole.  The doctors and researchers tweet using the chemical names.  To you and me, that's arimidex.  The headline in ASCO Post reads,

Anastrozole Reduces Primary Breast Cancer Incidence by More Than 50% in High-Risk Postmenopausal Women

In English?  There was a 2% difference between the two groups of women, those who took the real stuff and those who received a placebo.  Since 2% of the women taking arimidex were diagnosed with cancer and a whopping 4% of those taking nothing were diagnosed with cancer, there's your 50%.  Are you still with me on that?  What does it really mean when you cut your risk in half?  Line up ten women.  Do nothing, four of them will get cancer.  Do something and just two of them will get cancer.  That is a "statistical significance" which results in the aforementioned ACCURATE, yet horrible headline.  Not really a fan.  The side effects were discounted by the presenter who claimed they believed that 90% of the complaints were not related the to drug.  Something was said about the dangers of the other already approved risk reducing drugs (tamoxifen) in comparison to arimidex.  There are dangers and risks associated with both drugs.  Period.  The End.  There are side effects and the joint pain is real.  Period.  The End.  And the presenting doctor is on the speaker's bureau for Astra Zeneca who was one of the funding sources for the study.  Period.  The End.  Bottom line?  Until the presentation, all presentations, are peer-reviewed, they are merely presentations.  The full research findings, not just the slides with the great looking graphs, must be reviewed.  Then, a more accurate assessment will be shared.  And, if I have access to it, I'll likely find something that merits mentioning.  Especially when the presentation was so dismissive of the side effects.

The last presentation yesterday afternoon was one that was of great interest to me.  The presentation was about the use of bisphosphonates for patients with early stage disease to prevent recurrence and death.  Specifically, they looked at an oral medication that is not approved for use in the US (but is used in Europe) and zometa, which is an IV administered drug that is approved for use in metastatic patients.  The numbers were impressive.  The benefit of adding this to was equal to that seen with chemotherapy. They looked at thousands of women in over 20 different studies and combined all of the information.  After analyzing the information, it appears post menopausal women (naturally, surgically or due to ovarian suppression) will likely see a new standard of care within a year from what the play by play doctors had to say.  Again, this must go through the peer review process before there will be a change.  It is not approved for use in this setting.  It is, however, used for the treatment of osteopenia and osteoporosis.  I am six years post treatment but I also have six years of bone loss from the femara I have been taking.  I just had a bone density test.  I had osteopenia in 2006 when my base line bone density was done.  It has gotten worse on all subsequent tests.  Although no medication is without side effects, this is something I may discuss with my doctor.  Unfortunately (for him), I will be doing this during my MOM's monthly appointment next week.  After he finishes reading scans, I'm going to harass him.  And I'm certain by the time next Friday rolls around, he will have been harassed by enough women that I'll get a canned answer.  Wouldn't you all like to be the fly on the wall for that?? Joking aside, I know I won't get a canned answer, I will make my own appointment to review everything and make an informed decision weighing the benefits against the risks because that is what it means to be engaged in one's own medical care.  As of now, there's still no story by Reuters or the AP or any other news outlet weighing in with a Hyped Headline but I'll add a link when I see the first one.  I'm a bit surprised it's taking this long.  That was a pretty big deal, was big buzz.  Go Figure.

The most thrilling moment of the day came later in the evening.  Each day, there are mentor sessions. A panel of exceptional doctors is assembled to discuss the daily presentations with the advocates.  Thanks to the Alamo Breast Cancer Foundation, the mentor session was streamed live.  It was the very first time they ever did that.  Does it sound weird for me to say that I was as excited as a kid in a toy store?  I hit the link, found Lori @regrounding, couldn't find the link for the live feed.  It gave us a few moments to catch up.  We were tweeting buddies in San Antonio last year.  Roommates at every conference we attended together and with Jody @jodyms, we were running around San Antonio just twelve months ago.  When we located the feed and saw the familiar table of panelists, I felt like I was at one of the advocate seats.  Technology!  I had a question about that zometa study and I knew another buddy was in that room.  I sent her a tweet, asked her if she would ask a question for me.  The very last question they took was from Terry Arnold.  Terry is the founder of The IBC Network Foundation.  Inflammatory Breast Cancer.  Never heard of it?  Poke around Terry's site.  For the first time ever, there was an entire session dedicated to the discussion of IBC.  Terry stood at the microphone and said she had a question from New York.  My question.  And that was pretty damn cool.  Even the panel was amused.  And Karuna, from Breast Cancer Action who was also in the room, and at the microphone asking the hard questions, sent me a message to let me know they were cheering from far far away.  Yes, technology. Some awesome stuff there.

And THAT brought back a flood of memories, of San Antonio 2012, of dinner on The Riverwalk with Jody, me, Lori, Karuna and Gayle.

Tomorrow?  There is a crisis that is not being discussed in San Antonio in the form of a report that was released just yesterday by the World Health Organization.  And there is a mental health crisis in this country, too.  When government representatives attempt to do something for this community, people really must sit up and LISTEN.  More tomorrow.....

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SANDY'S LEGACY WILL LIVE FOREVER

Her smile was bright, her wit was sharp and her heart was as big as the universe.  In Pink Ribbons Inc, she said:

“It’s almost like our disease is being used for people to profit.  And that’s not okay.”

Sandy Kugelman died on Friday and the world is a little dimmer today than it was last week.  This has proven to be a most difficult post to write.

Sandy was my friend.  We never met in real life but as I've repeated so many times, It Doesn't Matter.  It hurts.  We connected deeply and we have been talking offline for about 18 months.  It started when she wrote the words "thank you AnneMarie" in a public forum where I opened my big mouth.  It was a debate about Pink Ribbons Inc and I was trying to speak as a Fearless Friend.  I was stunned to see her comment and her validation meant so much.

I shared a little about Sandy in a blog I wrote just two months ago.  More than the blog, I hope you will read the article in Austin American as it paints such a beautiful picture of how she lived, of who she was.  My friend, Grazia wrote a post for her Italian audience.  I said this piece was difficult to write and I initially forgot to include the link.  For Grazia, it's personal, too.  My global buddy.

Want to hear Sandy?  At the 1:10 minute mark of the trailer for Pink Ribbons Inc, she speaks those words quoted above.  At the 1:50 mark, Mari, another member of the IV League Support Group spoke other very telling words.

"We're living.  We're human beings.  We're not just a little pink ribbon."

When Mari died in October of 2011, Sandi was heartbroken.  Mari's death was recounted in this blog post by a family member and Sandi shared her sorrow in a comment.  The first time I connected with Sandy, she told me about Mari.



This interview from October 2009 is a must listen to.....



She pretty much nailed every aspect of what I hear when I listen to those with metastatic disease talk of their fears, their frustrations, their need to connect with the community.

True to form, Sandy's caring spirit lives on in her wishes which were shared on her Facebook page.  Even in death, Sandy made sure her voice would be heard on behalf of those living with metastatic disease and the 30% of us early stagers who will develop distant recurrences.

May there always be another treatment option and may there come a day when the treatment options are not debilitating and afford all metastatic patients long and full lives.

I miss that smile.  I miss that wit.  I miss Sandy.

"In lieu of food or flowers, Sandy asked that donations be made to METAvivor.org, an organization she strongly supported for its emphasis on meaningful cancer research, rather than 'Pink Ribbon' breast cancer organizations."

Just a note: The San Antonio Breast Cancer Symposium is this week.  I expect this blog may be a bit on the quiet side as I watch the news coming from Texas.  Less than 90 minutes from Austin, where Sandy was laid to rest this weekend.

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CHEMOBRAIN STUDY FOLLOWED BY SOME FUN

Are you interested in sharing your chemobrain information with the research community?  I did and the survey did not take nearly as long as they say (45-60 minutes).  Maybe I really DON'T have chemobrain and I'm simply a chemo-fraud....

The University of Kansas School of Medicine is conducting an online survey.  The link to the survey is at this address:  https://survey.kumc.edu/se.ashx?s=5A1E27D26B60E80F .   In case you have to cut and past, I've posted it as an address.  Go, read, participate but be sure to come back here because we are going to have a little fun.

This is a recycled blog post.  It originally appeared in February of 2012 so if you've been around for some time, you probably saw this already.  If not, do share in the fun.  FYI, I'm proud to say that almost every item on my list was included in the survey in one form or another.

Let's play a game today.  I'm sure many of us have gotten emails that begin:

"You know you are from New York if..."

"You know you are Italian if....."

Plenty of other examples, but some of them can be construed as disparaging to others so I'll stick with the ones that specifically pertain to me.  I am from New York and I am third generation Italian-American.  All of my great-grandparents emigrated to the US from different parts of Italy.  Their names are etched in stone on Ellis Island.

My grandparents were all born in, well.. New York.... And I was raised in a very old fashioned Italian home.  So yes, tomato sauce is gravy and "the city" is Manhattan. Those other boroughs don't count for shit. (And yes, you do curse, a lot)

Chemobrain?  A friend, who obviously does NOT have chemobrain or she would never had planted this thought in my OCD, ADD, unable to focus for five seconds head...... "You should do one of those 'You know you are'..... joke things."  People pleasing is one of those things I simply MUST DO.  Besides, I kinda owe her.  This blogging gig was her suggestion.......

Given the fact that the Journal of Clinical Oncology published results of a study wherein they observed "Survivors Who Were Treated With CMF Chemotherapy May Have Subtle Long-Term Cognitive Difficulties" ....... and they are talking twenty years OUT... and yes, CMF was the cocktail of choice for my cancer.  And, maybe some of the issues may not be so subtle.. and why do I suddenly feel like a child?  Why do I want to start chanting... "Nah nah-nah na na.. Told you so...."

Keep that validation flowing my way.  The world is getting it.  At long last....  So..... here goes with a list of "stuff" .....  I hope you will add to the conversation.  Humor me and share your silliness.  Comment away.  I am well aware this is a sensitive topic and I believe it is far more widespread than we will ever know.  In fact, I'm CERTAIN ..... willing to bet my LIFE on it certain ...... that many hide their deficiencies in fear of their jobs...... if you want to share and fear for your career, you can comment on this blog "anonymously" and even I will be unable to locate you.  Comments are not moderated.  Maybe I should not have made that anonymous comment thing quite so public.  Please don't give me a headache and force me to go deleting shit all over the place.  I'll start and then I hope some of you will Fire Away.....

You know you have chemobrain IF....

• The biggee:  You drop words.  Ordinary, everyday words simply vanish from your brain.  In the middle of the sentence.  Right as you were ready to SAY THE WORD.  Poof.  Gone.  If you do this and you do NOT have chemobrain, there is a difference between "it's on the tip of my tongue" and a "word drop."  If you have chemobrain, you know EXACTLY what I mean.
• You want to punch people in the face when they say, "I didn't have chemo (or cancer), what's my excuse?"
• Your yoga instructor finally realizes she can't say "place your right hand on your left ankle" because you can no longer hear left and right and figure out which hand goes where and you find your body is twisted into a pretzel before she gently guides your movement.
• You can no longer read a map on a computer screen.  You actually touch the screen as you hear your own voice saying "west-east" and you still think you need to head the wrong way if you want to get yourself to California from NY.  Wonder how long I'd be in the Atlantic Ocean before I realized I was heading for Europe.
• You can't retain a string of more than 5 numbers unless the FIRST three numbers are meaningful in your life.... like an birthday or an anniversary.  On a good day, you may have the memory power to recall a Six Stringer.  If there is a 7th number thrown in, you can't remember ANY of the numbers.
• You constantly transpose letters or numbers.  Or better yet, you find a number inserted in the middle of a word and wonder who the hell wrote that???
• Certain letters no longer exist.  For me.... "q" is my new "g" Every time I type the word "fatigue" I have to pause. Only after I saw the word fatique in several of my journals did I realize this.
• You say, "I'm sorry, what did you say your name was?" .... but YOU do it about five times in the same conversation with the SAME PERSON.
• You stop in the middle of a sentence.  Literally.  And you have NO idea what the hell you were even saying.
• The simplest math calculations are impossible to perform in your head.  Sometimes, even writing them out on paper is useless.  Impossible to determine where to "start" breaking down what amounts to a second grade math problem.
• You are exhausted at the end of the day, you know you were busy ALL day, yet, at the end of the day, the TO DO pile hasn't budged.  In fact, it's gotten bigger.
• You have gone from Miss Organized to living in what appears to be a college dorm room.  In every single room. In your entire home.  A mess everywhere.
• Focus.  Huh.  What did you say?  I'm sorry.  I got distracted.
• Walking and chewing gum simultaneously?  Multi-tasking.  No can do.
• You have a note book to keep everything in one place.  
• Within a week, there are three or four notebooks floating around.
• You can't find ANY of the notebook(s) and even if they are right in front of you, you don't check them anyway.
• You can have a completely normal, pre-chemobrain GREAT day.  And then?  Same shit for another month before you see the likes of that again.
• Reading a novel?  Despite the fact you always loved to read, and you may have always had a "book stash" on hand from poring voraciously through the NYT Book Review each week, EVERY week, IF you can even concentrate with the book in front of you, good luck when you pick it up the next day.  It's like you never read a thing.  Stick to short stories.
• Your phone calendar is your lifeline and the alarm feature is essential.  When you remember to unmute the phone.  IF you remember to unmute the phone.  IF you can even find the phone.....
• You do eventually find the phone.  In the freezer.  In the fridge.  The spare fridge in the garage.
• There's no need for a spare fridge because the real fridge is empty and the only thing in the garage fridge is your cell phone and maybe one or two of the landline phones, too.  Oh yeah, and a notebook. 
• You notice the gas burner is on two hours after the food was cooked, consumed and the mess in the kitchen has long since been cleared.  That will be funny until the house burns down.  Then, not so much.
• Sometimes you feel like your balance is off.. I was never Miss Coordination but hell, this is definitely different and definitely noticeable to me.
• You MIGHT have an issue behind the wheel of the car.  Some kind of focus issue when you have to maneuver from a stopped position where you are required to pay attention to the front of the car AND the back of the car. That constitutes multi-tasking under the new normal.  This too will be funny until your shiny car resembles something that took the pink ribbon in the demolition derby.  Then, not so funny anymore.  Not the car, not the new normal and especially not the friggen ribbon.
• You want to kill the next person who tells you "it's the new normal"
• You don't want any more "work around solutions."  You want answers.  You want the truth.  You can't HANDLE the truth.  Sorry, Jack, You Are Wrong.  I CAN handle the truth.  I just need Cher to bitch slap me to Snap Out Of It. 
• You turn into the court jester because sometimes, ya just gotta laugh.  
• Instead of crying over the fact that some chemo drug may have caused physiological brain damange, you are jumping up and down in jubilation.  Every time new research information is splashed across some medical journal, you are deciding if you should be shedding tears (of joy?) or blasting some crazy hip hop music to do a victory dance.  Cue Pitbull.  I'm ready to surrender everything tonight. 

OK...... Tag, you're it.  I stole enough of the obvious ones...... you take it from here...... I'm still basking in the glow of the study.  I'm wearing my chemobrain with pride today.  Yay CMF.  Yay Me.  I had that "mild chemo" .... you know.... the kind that did NOT make me lose my hair.  Instead, and yes, this would be to YOU, CMF:

You shook my nerves and you rattled my brain. You broke my will-- I'm screwed up still..

Goodness Gracious Great Balls of Fire!

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