GRATITUDE TODAY, TOMORROW AND ALWAYS

"LUNG CANCER CHRONICLES:  MY GRANDFATHER"

This is really an expression of love: of family, of friends and of all of those whose lives have somehow intersected with mine. My life is enriched by every relationship, and I am me, this person, because of all of those who are now a part of me.

Some relationships are or have been purely filled with joy, some tainted with deep sorrow and others have left me me with wistful feelings of what might have been.... indeed, what should have been.  My grandfather fits into all three categories and he was only in my life for a short time.  His legacy and the memories have lived on in the stories and the photographs and especially those old movies.  Despite having no sound, the images tell such wonderful and rich stories.

I think it had to have been the first time I heard the word cancer.  Over the course of the years that followed, I remember hearing things like, "Six months.... the operation was over quickly, as soon as the doctor saw what was going on, they closed him up and gave him six months."

My nana was a widow for FORTY years.  My grandfather was larger than life.  He was 55 years old when he died.  I was a child. A heartbroken child.  Not only was it the first time I heard the word cancer, it was the first time I was touched by death.  It was November 28, 1966.  Lung cancer.  It would be just two months later that my mom's dad would die.  Also cancer.  His was liver cancer if I'm not mistaken.  Decades of no progress where it really counts despite the way the statistics are presented..... Because lung cancer is so stigmatized, that has become a key focus in my life but really, we need more big success stories, across many cancer types and subtypes.

My focus is on one grandfather because the anniversary of his death happens to be the same day as Thanksgiving.  Coinciding with a holiday, it has given me reason to pause and reflect.  Like my dad, he is missed at every occasion, every Sunday gathering and pretty much every day.  Today, as I make the last preparations to celebrate a quiet holiday with five of us at the table, I pause to remember all of those who are no longer here.  I will gaze at the flickering candle flames and send love and light to all who have come to mean so much to me.

Thank you for being a part of my life, for allowing me into yours and for sharing the path with me.

We never know where we will be from one holiday to the next and I can tell you that much has happened since last year. Some things I've shared openly, the good, the great and the heartbreaks, too.  Others I've kept close to my heart.  They are either too painful to share, or they are not appropriate to share because the stories are not mine to tell.

I'm grateful for the gifts of love and support I've received by simply typing words on a screen and sending them out into the unknown.  You, whether in the blog world or in the twitterverse, have held me up at times you may not have known I needed to be held up.  I've shed many tears over the love you've so generously showered upon me and I've laughed aloud on several occasions at the silliness we have shared.

Yes, I am grateful..... in ways I can't even begin to describe.

Signing off until next week.......

With all my love,

Anne_Marie

I swiped this photograph from my mom many years ago.  It was taken in the yard of my childhood home.  My dad was younger than my kids and my grandfather was younger than me.  I know they would both be filled with pride at the way their family has grown.

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BOTH SIDES OF 23andME

There are two perspectives to examine and when I look at each side, I arrive at completely oppositional opinions.  In other words, I'm disagreeing with myself.  Lost yet?

23andMe is a company that will test our DNA and provide us with a vast array of information.  One saliva sample and the test will produce a report including over 240 health conditions or traits.  Unlocking our DNA potentially holds the keys to many breakthroughs.  We may learn if we are at risk for developing a disease, researchers may find ways to interrupt the process or "repair" a mutated gene.  And that's barely scratching the surface.  And it's a gross oversimplification of a highly complex matter.

Yesterday, I learned that the FDA sent a Warning Letter to 23andMe directing them to stop the sale of their DNA kits pending receipt of specific information they were asked to provide.  It wasn't long before discussions began on social media and my initial reaction to the announcement was completely in support of the FDA decision.  It also wasn't long before a petition was drafted demanding the Obama administration overrule the FDA decision.

Having had the experience of genetic counseling before my own BRCA testing and having also experienced genetic counseling with my dear friend about a different mutation which causes a rare thyroid cancer, I understand the full ramifications of genetic testing.  The key is to know what you will do with the information before the needle touches your skin for a blood draw or in the case of saliva testing, before the spit leaves your lips.

There was a rather robust discussion and I read through the articles written by a number of journalists.  Matthew Herper, in his Forbes article, questions why 23andMe has not responded to the numerous requests made by the FDA.  He supports our freedom to access our DNA data without the need for a middle man.  I want to agree with him.  However, I can't.

Many of us struggle to understand evidence based medicine when a disease is already diagnosed and being treated.  Those of us who seek to facilitate this process as advocates try to break down the science so it can be understood by others who, hopefully, give that information the weight it deserves when making treatment choices.  It's okay to go against the evidence (I'm speaking strictly to the lumpectomy/mastectomy debate) but not if we are doing it out of a sense of hysteria or to blanket ourselves with a false sense of security.  Our reasons should be compelling.  And compelling enough for me can be as simple as "I want them to match" as long as it's thought through.  Thoroughly.

In the petition, it is stated that the "risks associated with services.... are understood by private consumers....."  I respectfully disagree with that statement.  Why?  Those who are involved in the present conversation, discussion, debate in support of 23andMe are all science savvy.  Unfortunately, that is not a true (or even close) representation of the majority of the population and it seems to me, the FDA is seeking to protect the rest of us.

Some of us are hand-wringers, some of us are complete hypochondriacs and some of us simply do not understand the ramifications or the significance of the information that may be gleaned from our DNA.  If that is the target audience and 23andMe is all about providing individual data to any person who spits and sends along with their $99.00, I stand by my feelings.  This information does not belong in some of our hands before we fully understand the overarching reach and the spider like impact some of this information may cause.  If there is something identified for which there is no known cure or any preventative measures, which is 100% guaranteed to develop (Huntington's Disease jumps to my mind), is it ethical to simply provide a test without counseling a patient first?  (That link is not going to work without a Medscape login)

I say no test without full understanding.  Signing a disclosure when it comes to genetic testing does not constitute full understanding.  It simply says, "I need to sign this in order to have the test processed."  You know I'm right.

We struggle with decisions when we already have a disease diagnosis, now let's add the maybe element.  If there are over 240 things being examined, how extensive is the information being provided.  Am I being told the odds?  Over what time period? Is this just a predisposition to something innocuous?  Can it be misunderstood (Hell, yeah)?  How reliable is the test itself? And most importantly, does the average patient know to ask these questions?  That's where my "the FDA is right" comes from.

Please don't yell in my direction.  It's my opinion.  Information in unqualified hands with no place to turn for additional clarification is dangerous.  Again, my opinion.  And the biggest reason why I DO agree with the FDA.

Having barely scratched the surface on "the FDA is right," there is a flip side.

IF the goal of 23andMe is to crowd-source the data so there is a wealth of information available for research, then I think the FDA has overstepped and they need to back off.  In this scenario, they indeed ARE standing between a patient community willing to supply information and the research community who needs that information so medical advances can be made more quickly and with greater efficiency.

I have more questions before I can truly choose a side but if it is about amassing data, the test should stay.  Hands down.

If it is about individual test results, not so much.  I respect those who feel differently but please consider this.  You may be one of the science savvy people, or perhaps it's something to do "just because."  And that's fine.  But, as an advocate who is trying to look at this from many angles, a substantial group of people might be adversely affected unless 23andMe provides extensive explanations written in language that is easily understood by most when reporting results.

And still, I do believe advance understanding of the ramifications of test results is one of the most important components.  In other words, pre-test counseling.......


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DISTRACTED BRAIN DESTRUCTION

Chemobrain seems to be getting more press and I've likely saved the links to the most recent information somewhere.  The problem?  Where??  I will locate them and I will update the information page.  The more I read, the more I believe as science begins to unlock some of the secrets being held in our brains, the advances will translate across many different diseases. That's just an educated guess, an opinion, an observation based upon reading and seeing many similarities.  Don't even ask for an example.  I have plenty.  Just can't recall where.

This post was written almost 18 months ago.  It captures a day in the life... or a week or... in some cases, months.  Big blocks of time, and not big blocks of progress.

This is my biggest frustration and those mini projects I expected to address back in June of 2012?  They remain on that every growing to do list.  Welcome to my world.  Aside from the word drops, completely losing my train of thought, forgetting entire conversations, it's the distracted brain that wreaks the most havoc.

As originally posted in June of 2012 

It doesn't take much to throw me off track.  After yesterday's stint in my office, I see that "getting thrown off track" also translates into losing track of time.

This is the one element of my chemobrain that I would love to find a better method of controlling but THIS is the the element that seems to worsen despite my very best efforts.  Ok.  Who the hell am I trying to kid here?  I am distracted. Constantly. What constitutes a distraction?  Something as wondrous, quick and fleeting as the hummingbird I happened to see outside my patio door or something ELSE, like the water pouring into my basement for the second time this week, despite the thousands of dollars spent on a fancy french drain system to keep aforementioned basement from ever flooding again.

Yesterday, I was determined to plow through the massive amount of paperwork I managed to accumulate in my office. The room where I spent MY LIFE until a few months ago has turned into the equivalent of the land of the misfit toys in that very old version of Rudolph.  It's an epic mess and I got a good look at just how epic the mess has become.

I no longer open mail.  I bring it into the house.  Sort it out.  Toss the junk (without shredding it, shame on me).  Put the "important stuff" on the staircase.  That's the holding cell for anything that belongs on the second floor of my home. Rather than use this as an opportunity to get in some weight bearing exercise, I accumulate "stuff" and bring it up all at once.  And then, I don't look at it.  There are just small piles of daily mail strewn about the room.

Today, I saw just how many small piles I'd managed to amass and how long they have been sitting there.  Since. March. And, it is now June.  Three MONTHS of bills accumulated.  Hell.  I only brought that mail up last week.  Until I remember. Embrace the new brain, AM.  It has no concept of time.  Great combination..... distractions plus the inability to properly judge time in minutes, hours, bedtime, and now weeks and MONTHS??

It took me almost a year to coordinate every single bill that comes into my home.  In an effort to preserve the credit I painstakingly maintained for decades, I knew I had to do something.  This element of my chemobrain was decimating my credit.  I found the best possible work around solution.  The bills are on autopay or they are being billed to a credit card which is on autopay for the only the minimum payment.  At some point, I DO have to focus and pay the credit card bills. In Full.  I don't carry balances. At least I didn't.  In that other life.

How does someone who was at the top of their game in the world of accounting find themselves providing utility companies with access to their checking account???  If anyone has an answer, I would be much appreciative.

I'm embarrassed to admit I have checks from April that are sitting on my desk, too.  Checks that I can simply sign and photograph with my phone and viola!  The money is in my bank account.  The checks have been sitting there for two months, too?  Since there is a limit to the number and/or dollar amount of the checks, I can't even dispense of that chore in one sitting.  Maybe I should just take a ride to the bank?  {Noteworthy:  I think I've finally gotten the check deposit thing under control... they don't sit for months, it's generally no more than two weeks.  One improvement I can identify some 18 months later, just ONE of many issues but hey, it's something}

Between today and tomorrow, I will finish plowing through the mess of papers in that office.  Then, I will bring in help. Someone to sit with me and purge the file cabinets of the old stuff.  I need to clear the clutter.  The amount of the clutter in that office is in direct proportion to the severity of my chemobrain.  If I can reorganize, things will be better.  I keep saying that.  I keep coming up with another light bulb moment and I have yet to find the one that will keep me on track.

I finally understand precisely what Tim Ahles (google his name... he's pretty big in this game) meant when he said someone who is retired and has little responsibility will find it far easier to deal with the cognitive issues than those who still maintain some semblance of daily responsibility.  I went into a total panic earlier when my husband suggested I might need to go into the (real) office one day next week to review what is on someone else's computer.  I felt myself beginning to get flushed at the thought of sitting in a noisy office.  The cross talk.  The interruptions.  Trying to figure out someone else's methods of billing when I can't pay one bill on time.

And then I recall the last time I went into the office.  It was calm but to me, it felt like one big commotion.  I remember actually putting my hands over my ears in an effort to shut out the noise.  I need complete silence or I can't concentrate. The whole incident served as a reminder.  THIS is something you can no longer do.  And I got upset.  The reminders upset me.

I couldn't get out of there quickly enough.  When I did, I became completely disoriented and took a scenic route through some not so scenic (or safe) neighborhoods in order to get home.  With the navigation system directing my every turn. And the map on the dashboard.  And the fact that I've driven that very route dozens and dozens of times.  I was panicked to the point of tears.  Where the F*&%K am I?  I recognize the street name.  Do I turn left or right?  I can't discern left or right without thinking about it for a second.  When driving, that's an issue.  And driving in and of itself is another issue for another conversation.....

I tried my very best to laugh as I navigated those streets making lefts instead of rights, staring at some of the dilapidated buildings in the not so stellar neighborhoods through which I was driving. 

But sometimes, it's just not funny.

I really do miss my organized brain.

I miss the reliable brain.

The one that showed up each and every day.

Wait!  I think I hear water dripping...... Were those actually **snowflakes** I just caught out of the corner of my eye?  What time is it?  When do I have to be at yoga?  Don't I have a meeting tonight?  What time?  Where am I?  WHO am I?  What the hell happened here?

Oh, yes..... now I remember.  It's a thing called cancer.  After the fact.  Many years after the fact.

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TONGUE TWISTER: @MEDIVIZOR LOVE FOR @METAVIVOR

There are so many comments so graciously left on previous posts.  I've begun to reply to each of them and then, I get caught up in something and it falls off the radar.  Not that it's unimportant, it's just that something else somehow lands on the crisis pile.  Mind you, by crisis, it may mean that my bills were neglected, yet again which could result in the electricity being turned off.  Or, it could be two pieces of registered mail that I forgot to pick up resulting in a scramble of calls because the "deadline" in at least one of those letters was 5PM on the day I actually retrieved the mail (at 4:30PM).  Yes, I'm my own best friend and my own worst enemy all rolled into one.

Once again, I find myself in a THANK YOU ALL for each and every one of the beautiful comments and words of support that were left on the recent blog posts.  Yes, I read each and every one of them.  The words mean the world to me.

I'm feeling very disconnected from everything but it's undoubtedly due to the piles of crap all around me.  Along with the heartaches of a few people who are close to me and the fears of a few others over looming tests....  it disorients me.  On top of that, my health insurance carrier decided it would be a good idea to revamp their entire product effective January 1 which means, effective December 10, I have to arrange for alternate coverage with a new carrier.

Sidebar:  This is a small group policy and while I know very little about the ACA (aka Obamacare), what I do know is that a somewhat comparable policy to what is being cancelled is going to cost approximately $900.00 a month.  For a single.  If I choose a less expensive option, I am still going to be paying about 7K per year to the insurance company and the first 3K in medical bills, including medications will come out of my pocket.  Between my follow ups, my monthly medications and routine gyn visit, I will be paying 10K before the insurance company pays 10 CENTS.  Since I don't know enough about the whole thing despite the fact the clock is ticking, I'm not going to mouth off except to say, 10K is NOT affordable.  My broker is working diligently to get me information but he's akin to a blindfolded boxer with one hand tied behind his back.  This stuff is a mess.  A Big Mess.  And that's not a political statement, it's just what it is.  Disorganized and considering these deadlines didn't just jump out of nowhere, I'm a tad irritated.  The cart is before the horse in some of this but I'll leave all of that for another day and for someone who has a better grasp on the matter.

On to MUCH more helpful things on the medical front.  I'm going to close out the week by suggesting that everyone JOIN Medivizor.  First, again, manners.  Tal and Ronen, the CEO and COO of Medivizor were in NYC last week.  I met them for dinner which was an absolute delight.  Might have been a good idea for one of us to grab a cell phone and snap a selfie.....

Don't know about Medivizor?  This was the blog I wrote when the site was in early adopter mode.  It has undergone at least a dozen improvements and I thought it was perfect when I first joined.  It's continued to get better.

The information is reliable.  The journals where the research is obtained is cited.  An easily understood synopsis is provided with all of the important points included in the outline.  You can send articles of interest directly to twitter, write notes, provide feedback to the Medivizor team or even start a discussion about an article.

In the spirit of the season, Medivizor will be donating $1.00 to METAvivor for each breast cancer sign up between now and the end of the year.  They have selected one charity for breast cancer and their chosen charity is METAvivor.  As many already know, METAvivor is all volunteer and every penny of every donation is used to fund research that specifically targets those patients living with metastatic disease.  Every dollar will make a big difference so I hope you join if you haven't done so and absolutely SHARE with everyone!

For my buddies in the lung cancer community, I know you had a robust chat last night (which I missed because of a phone interruption....) and I **think** there was discussion about getting information and making sure it was reliable.  Trust me, Medivizor is for you, too.

You won't be sorry.... plus, my picture is on their website.  Because I love it that much.

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MENTAL ILLNESS ?? DISPARITY BETWEEN THE HAVES AND THE HAVE NOTS

I am so disheartened on the one hand.  And on the other, I am thoroughly and completely disgusted.

I have a friend who does not live nearby.  I've known her for many years.  Her daughter was diagnosed with a mental illness quite some time ago.  There were behaviors over the years, as is the case with many of those who suffer with diseases of the brain.  Some of those behaviors created legal troubles and her daughter has spent time incarcerated.

She was on probation and about a month ago, she was given a one year jail term for a parole violation.  It was not for a violent episode or anything that caused harm to herself or another.  She didn't steal anything.  She was beyond the geographical boundaries permitted by the conditions of her parole.  Far too many who suffer from mental illness, find themselves on the street, seeking shelter with the next friend or family member on their list of people.  As she moved down the list, she also moved beyond her circle.  Legally.

Now under arrest, directly from court, she was brought to a regional jail.  My friend brought a bag filled with medications that her daughter needs.  She has some rather serious physical issues in addition to the mental illness.  (Why we even differentiate between the two is pissing me off...  a disease of the brain is a disease but before I go off in a million directions....)  So there are many health issues and if I understand this properly, until the jail does a medical evaluation, her prescribed meds should have been administered from the clearly labeled pharmacy bottles brought from home.

It seems no medications were dispensed.  She was taken into custody somewhere around October 22nd.  Five days ago, my friend received a call from one of the other women in the unit.  Her daughter was removed from her cell, unconscious.  Body spasms and shaking (perhaps like a seizure) were observed by the other women and the guards were overheard using the word "stroke."

Three weeks without all prescribed medications for both her physical ailments, which are quite serious and her mental illness could do that.  Some of the medications can't just be stopped, they must be weaned for one thing.  And for another, this is the USA in the year 2013 and a 30+ year old woman has been treated in a cruel and inhumane fashion.  In a jail where the explanations are, "Just because....."

And today, it is my friend who is being treated in the most cruel fashion.  She has no idea where her daughter is.  Her attorney was blocked from getting any information.  No explanation for that.  The only thing my friend was told was that her daughter is alive.  The supposed explanation for zero information to mom.... HIPAA compliance according to the jail officials.  When she asked the jail to please give her daughter a HIPAA form to sign, she was informed they don't do that.  Her daughter has to ask for the form, they do not and will not offer it to her.

As of now, nothing is known of her medical condition.  Her whereabouts are also unknown.  She may be in the medical unit of the jail or she might have been moved but there is no way to find out.  She may be conscious or she may be comatose.  A petition was being made to the court for immediate relief of some sort based upon cruel and inhuman punishment.

I don't know anything about that petition so I can't share more information.

The only thing I can say is this.  The jails are filled with the mentally ill and that is wrong.  I've been on a high horse about the way we care for the mentally ill in this country since July.  For those who may be familiar with my introduction to the mental health system, this friend is NOT the same friend I wrote about over the summer.  There was financial means to arrange for private care and that treatment is ongoing and unbelievably expensive.

In this case, there was not a well of funds from which to draw.  If we are to discuss disparity, there is no wider disparity than exists in the treatment of mental illness, diseases of the brain.  Even those with the best insurance coverage, in almost all cases, are forced to pay tremendous sums of money, out of pocket.  The haves get treatment.  The have nots wind up on the street, or in a psychiatric ward where they are drugged to keep them sedate, or in jail.  I'm watching this from both sides, seeing the disparate care and treatment of those who have and those who don't and frankly, it sickens me.

I'm angry.  And for those who may think this sounds like a bunch of bullshit, I can assure you, it's not.  This is a real life situation that is playing out now.  I spoke to my friend the other day.  I was given many other details which I'm choosing not to share.  Yet.

My last communication with her was several hours ago.  She was heading to the jail this morning.  If I don't hear from her, I should presume she got arrested for demanding answers.

I don't think I'll be sitting on the sidelines for much longer on the issue of mental illness and the need for advocates on EVERY level.  Research, care, housing, legal matters, insurance (because mental health parity does not truly mean parity but I'm still researching and learning so rather than spew, I'll fact check but at first glance, parity is an option, not a mandate) and the list is longer than I can digest.  I only know that the costs are enormous and as I've discussed with others within this group of friends who are hand wringing beside me, it's time to remove the stigma from mental illness, it's a disease, NOT a character flaw.

And, the mentally ill can't just snap out of it.  Those who have that set of beliefs are not only without compassion, they are IGNORANT.  Yes, totally and completely IGNORANT.

It's time for the rest of us to snap to it and demand change.

Those who can, Should.

And those who should, Must.


After writing this post......
As if by magic, Intake.Me posted a link to this article in Slate:

No one brings dinner when your daughter is an addict.  Let me just mention that the author's wife was treated for breast cancer and the casseroles were flying.  He knows first hand.


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LUNG CANCER CHRONICLES: MY DAD

This photograph was taken on December 25, 2006.  Less than seven months after this picture was taken, my dad was gone.

My dad knew.  My mom knew.  They knew for more than a month.  In less than 24 hours, we would be told.  First, I had a date in the infusion suite at MSKCC.  Merry Freakin' Christmas.

And MOM... I KNOW you ARE READING .... Please PLEASE... can you skip this one?  Please??

Chemotherapy, followed by the planned lunch at my parents' with my siblings.  Somewhere in this blog is a post describing the absolute despair I felt the moment I heard the words "thing" and "lung" and "surgery"  ....  I already felt like shit which is the general way things go as chemotherapy progresses.  I was perhaps, half-way through my chemo when this news was shared.

That was my dad with a Stage One lung cancer.  In July, in an overcrowded emergency room, he would stop breathing.  It was one of those moments.  I remember hearing a scream and I remember that it was my own scream.  And then, I remember being outside.

The charge nurse appeared before my mom who was sitting on a bench, surrounded by my brothers, in a daze.  I could hear what sounded like a very far away voice.  "We need to know what you want us to do."  She repeated her question and it suddenly dawned upon me that she was asking my mom if they should attempt to resuscitate him and I snapped out of my nightmare and back into the moment.

I recall getting up in the nurse's face.  I recall lifting my finger to punctuate my point.

"You go in there right now and save my father's life."

I recall a snippy and maybe even a dismissive tone, perhaps it was a hint of sarcasm.  Or maybe I was hypersensitive and she was simply all business in that moment.

"I know what YOU want, but that's not what matters.  I have to know what your father would want."

I detached my emotions and I began to recant what my dad had put himself through from January until that day in July.

The 19th to be precise.

July 19, 2007.

As I was rattling off a list of medical procedures, I wasn't two sentences in when the nurse turned on her heel and RAN back into the emergency room.  She was looking at a frail and weak elderly man.  My dad expected he would once again, look like he did in this photograph.  And he fought like hell, moving from one procedure to the next.

Back in January, the night before his first surgery, I went to see him.  I would be at the hospital the following day despite the fact that a hospital is one of the worst possible places for a chemotherapy patient.  While I was there, the phone rang.  He was scheduled to have one or two thirds of his lung removed.  The tumor was between two lobes and the surgeon couldn't be sure until he was in the OR if the tumor was attached to both.

Now it's the night before surgery and that ringing phone?  The surgeon's office.  Mind you, NOT the surgeon, but the surgeon's office.  "Your surgery is not being done tomorrow but you should still come to the hospital.  They will be doing a bronchoscopy."

My dad got off the phone and I was confused and I was extremely pissed off.  This man is diagnosed with lung cancer, he is scheduled for a serious operation and less than twelve hours prior, there's a "change in plans" and the surgeon doesn't think it's important enough to get on the phone and provide information.  I'm certain I remained calm and I'm equally certain I was LIVID and likely, by the time I got into my car, I'm sure I was screaming.  At no one.

Who the hell was this guy?  How DARE he do this and not even have the professional decency to get on the phone.

As it turned out, because my dad looked so great, no one bothered to take a good look at his chart.  He had turned 70 and at 70, additional tests had to be done before they could operate.  This is the age of Big Damn Data.  And computers.  One would THINK that there would be a red flag built in SOMEWHERE.  The doctor's office, the hospital office, the idiots that gave him medical clearance.

The following day, the bronchoscopy was done and this is why certain tests may be useless.  The tissue sample was not cancerous but according to Dr Hot Shot Cowboy Surgeon, "We all know what we are looking at, it's definitely cancer.  This is not a reliable test."  So, I have a question.  If it's not a reliable test, why the hell did you just subject my father to this? Because there was an OR booked?  Because you needed to collect a fee?  Hindsight is wonderful but in that moment, I said none of this.  I only remember when he came to speak to us, he was condescending.  My dad's sister was seated beside me and she asked a question.  He seemed annoyed at having to explain the meaning of the word "necrotic" to her.  No, check that, he didn't SEEM annoyed.  He WAS annoyed.

This guy was already working on a two strike count and I'm pretty sure, that was the moment he was officially relieved of his role as the lead surgeon, or any surgeon.  Hell, this guy wouldn't be cleaning instruments or for that matter, even mopping the floor in the operating room.  In the six months prior, I had been in the operating room three times.  Beyond that, I spent more time in offices with many different doctors and I was not accustomed to this type of behavior.

That was day one of what would begin a very long haul for my dad.  First, they found he had two coronary arteries that were partially closed and required stents.  Then, they discovered an abdominal aortic aneurysm which had to be repaired.  Before that surgery, he had five weeks of radiation to try to keep that tumor in check.

The first attempt to repair the aneurysm was unsuccessful and yet another surgeon was axed from the case.  The day of that particular surgery, I had chemotherapy so I could not be there.  I remember how sick I felt when I got home.  I remember that I couldn't get off the sofa.  And I remember my brother calling to tell me, "The hits just keep on coming."  My dad was under anesthesia for over three hours.  For nothing.

My mom had surgery scheduled during this window of time and there was a point when BOTH of them were in operating rooms at the same time, in the same hospital and I remember running between two different recovery rooms.  I remember the staff wheeling one of their beds past the other so they could wave to each other.  And I remember thinking, "If my oncologist finds out that I was running around like this, through hospital waiting areas, in and out of recovery rooms, he would be mighty pissed off.  But the thing is... in those moments, I wasn't thinking.  At least, I wasn't thinking about me.

The fun truly began after the unsuccessful surgery.  I set out to find the most accomplished surgeon I could to repair the aneurysm.  There are two ways to repair an aortic aneurysm.  One was less invasive and would allow us to move on to this lung cancer issue far more quickly.  The key was to find the right surgeon.  The traditional surgery was far more extensive and would require much more down time.  There was a tumor that kept getting shoved aside because these other issues took priority.  And I was freaking out as the weeks turned into months.

Ultimately, the aneurysm was repaired using a stent.  The skilled surgeon performed magic in the operating room.  It was a five hour operation and if I'm not mistaken, this surgery was performed on the day of my last chemotherapy treatment.  Or it was the day right after and I was couch-bound.

He healed and then, he was right back in the operating room after more PET scans to make sure they were still dealing with the same tumor.  A new thoracic surgeon, a different hospital and finally, the tumor was out.  Up next, four rounds of chemotherapy.  That was the recommendation of the surgeon, of the medical oncologist and of the NCCN because naturally, I already had the medical professional version of those guidelines downloaded and studied.

There was a trip to the emergency room in an ambulance from the oncologist office at MSK during a consultation just to add to the commotion and ultimately, he began chemotherapy shortly after I had my exchange surgery and oophorectomy.  I met him and my mom for his first round of chemo.  I already knew the ropes.  I was a recent graduate of that infusion suite.  The first round of chemo knocked him for a loop.

I was with him the day before his second scheduled chemo.  I remember the doctor saying he knew he had a rough time but he wanted to try one more round.  My dad agreed.  That was the very last time I saw my dad walking.  The next time I would see him would be days later, in a bed, dying.

His body said, "No More" and the charge nurse from that emergency room wanted to make sure of my dad's wishes.

I can tell you this.  My dad was not ready to die.  None of us was ready to let him go.  His death was a shock.  He was on the mend.

This is how he looked just six months later, literally days before he died.  No it wasn't lung cancer that stole him, it was complications that arose afterwards.  I recall his doctor telling me, "He was far weaker than any of us could know."  And, it started with a lung cancer diagnosis.  And it ended because of the treatment associated with that diagnosis.

Before

AND ....  Six Months Later......

After.......

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CHEMOBRAINFOG GOES TO WASHINGTON

Completely unexpectedly, and totally out of left field but what a thrilling day I had on Wednesday.  Last week, Dr. Love asked me if I would like to go to the White House.  We were in a session at the Partnering for Cures meeting.  She was quite nonchalant so there was a second, or twelve, where I don't think I quite heard or understood what she said.

Suddenly, she had her iPad open and showed me the invitation in an email.  I immediately accepted the offer and knew she had to make sure I would get security clearance, etc.  The following day, she told me, "Done deal.  You're in."  And I would be getting an email with further instructions.  I still didn't quite believe this was happening, so I didn't quite say anything to anyone.

And then, a flurry of activity.  Send personal information to make sure I wasn't related to the Unabomber.  Thought perhaps those TSA up close and personal, "I have cancer breasts" might have me on some sort of list, so I kept quiet until I knew for sure.  And even then, before Wednesday, aside from my immediate family, I only shared this with three other people.  I suppose I thought I would be tossed at the door or something.

As the details of the visit began to unfold, I was a bit conflicted.  The group of advocates were going to the White House first and foremost to deliver the National Breast Cancer Coalition petitions requesting support of the bill in Congress, Deadline 2020.  And thus, the conflict in my brain.

On January 4, I wrote a blog respectfully requesting they consider, as an umbrella organization, to have that umbrella protecting the metastatic community from the rain.  On January 4th, I was also at Memorial Sloan Kettering with my mom for a bone biopsy.  The same day I wrote that post, I learned my mom's cancer had metastasized to a rib.  It's one of those, "you can't make this shit up" moments that life tosses my way to keep me on my toes.  My mom needs an umbrella.  I'm under the umbrella, so are my sisters and my daughter.  My mom was, too.  In the morning.  And then, at 5PM, she was simply holding the umbrella over the rest of us while she remained in the rain.

Despite a double mastectomy, despite passing the magic five year mark and indeed, likely a dormancy from her first primary diagnosis in 1987 not the second one in 2007 although, that has not been confirmed and a good advocate doesn't presume anything, my mom was stripped of her NED status.  I do, however, trust the doctors and researchers who are familiar with her medical history.  They are leaning toward the strong indication this was dormant for over 25 years.  Timely commentary for those following the Amy Robach, Good Morning America on air mammography story that "saved her life" which has been thankfully addressed by voices far more intelligent than mine.

I was having a crisis of conscious.  In the end, I was going as a representative of Dr. Susan Love, the Army of Women initiative and the foundation.  There are people I will follow blindly because they have earned my trust.  Susan Love is one of those people.  Some may see that as foolish, the following blindly thing and others may see the White House visit as me selling out on my values.  At the end of the day, I'm the one who has to look at the reflection in the mirror, live with my choices and decisions.  And this is a decision I will never regret.

I could tell you that I'm not a commuter and that Penn Station intimidates the hell out of me so the fact that I was choosing Amtrak over flying was a big deal.  Instead, I told that to one of the doctors at MSK on twitter.  Amtrak sent me a tweet welcoming me to train travel.  Yes, Amtrak sent me a message.  I could tell you that I was freaked out over the taxi line when I got out of the station and that I arrived at the NBCC offices 15 minutes later than expected.  And I could tell you that every single person in that room was passionate and committed.  And, I could tell you I was quite happy to be in their offices, speaking to people I've previously only communicated with via email or on social media.

We went through a run down of what would happen when we arrived at the White House.  We hopped in cabs and took a five minute ride from the NBCC offices.  After several security check points and a canine unit, a group of about 18 advocates from 14 different states were greeted by Hallie Schneir, the Associate Director of the Office of Public Engagement and Carole Johnson, Senior Policy Advisor, White House Domestic Policy Council.  We were ushered into a conference room, took our seats around an enormous table and Fran Visco, the president and one of the founders of NBCC was asked to speak.

She began by saying that there has been little meaningful progress in the research.  Operative word, meaningful.  I concur. She proclaimed that the gains have been incremental and they aren't making a difference for the 40,000 women who are still dying each and every year in the same numbers.  I concur, wholeheartedly.  She talked about the need for continued funding of research through the Department of Defense Congressionally Directed Medical Research Program.  As one who has been invited to participate in the peer review process, again, I concur.  I saw the dynamic in that room and I watched as the assembled panel of a diverse group of extraordinarily passionate scientists and clinicians pored over applications, each adding comments within their areas of expertise... and then, listened with great care to the patient advocates.  High risk, high reward and true collaboration.  And, a program that began thanks to the efforts of NBCC.  At the top of the list of their Fiscal Year 2013 priorities for applicants, "eliminate the mortality associated with metastatic breast cancer."  She talked about sequestration and how damaging that is to research.  I've blogged about that several times, not that it changed anything, but I did blog about it.  And then, she asked each of us to introduce ourselves.

I introduced myself in the allotted time, "I'm AnneMarie, I also* live on Long Island and I am here representing the Army of Women initiative of the Dr Susan Love Research Foundation.  I'm six years post treatment, my mom is being treated for metastatic disease and I have a daughter I'm trying to protect."  (That also*?  The woman who introduced herself right before me was also from Long Island. Go figure, fourteen states yet two of us from Long Island?)  There were metastatic patients in the group and there was an 80 year old who had more energy and fire than the rest of us.  Combined.  A few people spoke and then, the senior policy advisors wanted to hear what we felt would be helpful to us as advocates.  How could the government help?

Certainly a loaded question but at this point, my goal was to throw out reasonable, ACTIONABLE thoughts.  What did I say?  I'm not sure I quite recall but I remember saying that the group assembled was primarily science savvy and although many of us have a good foundation to understand the research, that isn't trickling down to a large number of people.  I said I thought it would be exceptionally helpful if somehow the government could help with the messaging.  And, I had a perfect example.  What's going on right now with Good Morning America and the media using celebrity to spin a story is counterproductive to what we try to do as advocates.  I think I said that the public is getting a skewed view and it would be very helpful to find ways to control the messaging so that what's out there is accurate because these celebrity stories always seem to be missing big chunks of important information and it's a disservice to all.  Since we were only asked what we felt we could use help with, I stated my case.  I offered no solution but if they would like to assemble a panel to discuss that in greater detail, I'm in.

As for NBCC, I hope as 2014 approaches, they incorporate specific wording into their annual plan.  My suggestion?  Assemble a strategic summit to develop plans for making metastatic disease into a chronic condition.  Manageable and survivable without sacrificing quality of life in the process.  Let's make sure the metastatic patients no longer die.  The NBCC Blueprint says additional summits will be planned as needed.  There have already been summits on primary prevention and preventing metastasis.  Preventing death is a summit worthy item.

The fact that it's at the top of the list of priorities the DoD wants to see addressed in funding applications, I'm hopeful that NBCC will follow suit.  Fran has made it clear that it matters to her personally and that it matters to NBCC.  Stopping the deaths.  It matters.  Now, I'm simply hearing my dad's voice, "If you are going to put something in writing, make sure you put it all in writing."  That was one of his lawyer-isms that I never understood, until I did.  

The action photo, as Sharon called it.... is one that I will treasure for the rest of my life.  This has been quite a month.

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LUNG CANCER CHRONICLES: MY NANA

Today is my nana's birthday.  More accurately, it would have been her birthday.  She died in March of 2006.  It was just weeks before I stepped into biopsy hell.  I am glad she wasn't here for that.

She had a very colorful way of saying things, I can guarantee she would have been mighty angry if she were still alive.  If I sit quietly, I can hear her voice and I can pretty much hear every curse known to mankind.  She would have used them all, and she would have made up a few new ones in the process.  Mom knows I'm right.  My two aunts know, too.  So, for that matter, does anyone who ever met my nana...

My grandmother died a few months after her 94th birthday.  She lived a long and full life.  And she smoked.  I remember her smoking when she was in the hospital being treated for pneumonia.  Obviously, this was many years ago when hospitals had smoking lounges but she was sneaking the cigarettes from her hospital bed.

I'm not advocating any of this, I'm just sharing a bit about her life.  And, including a little reminder: There was a point when smoking was not known to be harmful.  Or, it was known but it wasn't known by the general public.  Until the surgeon general came forward.

She was a rebel.  She was fierce.  And she was protective of all of us.

At 94 years old, natural causes is the only proper thing to say but the truth is:

My nana had lung cancer.

It was found on an imaging test when she was 91 years old.  She was not treated for the cancer and in fact, she never KNEW she had cancer.  My dad was adamant and fought with any and every doctor.

"She's sharp as a tack and she has a right to know.  We don't withhold information.  We are duty bound to tell the patient."  The doctors would be right but my dad was protective of my grandmother and he was having none of it.  Why should she live in fear of that word?  Of that diagnosis?

She did not suffer in the end, and pretty much, she smoked until the day she got into her bed where she died a couple of days later.

My heart was shattered and I'll never forget the words of the priest at her funeral.  "Ninety four years is still not enough."  And yes, he was right.   It wasn't enough time, there were still more memories to be made.  I miss her.

November 10, 2001:  At her 90th Birthday celebration, dancing with my dad.

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THEY SAY IT'S YOUR BIRTHDAY ....

I had a birthday over the weekend.  It wasn't a significant birthday, you know, one of those birthdays that end in a zero... or sometimes a five....

When we were young, the big birthdays ended in a six, an eight and then, a one.  After that, it's all just a blur of numbers.

Technically, EVERY birthday is a significant birthday but, oh you know what I'm saying....

The thing is, I am truly overwhelmed by the birthday wishes that were sent my way.  There were a whole bunch of messages on Facebook, a few phone calls, some text messages and I am so deeply grateful for each and every note or thought that was sent my way.

Thank you.  Thank you from the bottom of my heart.

As for this, I don't know whether to be amused or frightened.  Big brother is watching and I just have too much out there in cyberspace.

On the day of my birthday, I was looking for something on the internet.  I turned to google and saw a doodle.  It was clearly a birthday and I wondered who shared the 10th of November with me?  I know about the Marines.  That is one of those things I'll always remember because my dad made a habit of wishing me and the Marines a Happy Birthday.  Every year.

Except, google didn't acknowledge the 238th birthday of the US Marines.  And there were plenty who were not happy about it as reported in The Blaze.

The doodle on my google page was for me.  I'm going to guess they have a fancy algorithm or something and pulled the info from my google profile ....

Personally, I DO think the Marines should have gotten the shout out  .....

Still, this amused me because it's this little stuff that makes me laugh.....  So, a big thanks to the crew at Google.  It was a fun way to start the first day of the next year in my life.

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LUNG CANCER CHRONICLES: ALEXANDRIA

I don't keep up on awareness months.  Personally, I'd prefer a more unified approach to the many diseases that are under the cancer umbrella.  After seeing all of the attention in October and the fact that any mention of the word ribbon or the sight of anything pink means just one thing: Breast Cancer I can't help but compare.

It's lung cancer awareness month.  November.  I read a few other things that we are supposed to be aware of this month but for starters, shouldn't we be aware year round.  People don't only get cancer or die of their cancer in the assigned month.  It's a daily event.

However, there is a need to bridge the gap on behalf of the lung cancer patients.  Yes, those with other cancers are stigmatized and may be embarrassed to discuss the nature of their disease.  But, there is no other cancer for which blame is so easily assessed and judgement is immediately passed.

Irrespective of how or why it anyone gets a disease, this is disgraceful.  It's not about the cigarettes, it's about our lungs. No one shared that with a more powerful voice than Lauren Terrazzano.  If you don't know who Lauren is, you should click that link and learn more about her.

I read this story with great sadness. Alexandria Misnik-Gasior was diagnosed with Stage IV lung cancer.  This is normally the situation.  Late Diagnosis.  When hers was diagnosed, according to the story, it was throughout her entire body.

Her one request?  No mention of the words "Lung Cancer" should be included in her obituary.  The stigma.  She didn't want the stigma to be attached to her life, her legacy and follow her into her grave at the tender age of 24.

(If the link doesn't work, try googling her name and the name of the journalist who wrote the story for the Philly Burbs, J.D. Millane.)

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GOING FORWARD - #P4C2013 AND EPIC BEGINNINGS

There is something so different and so unique about the Partnering for Cures annual meeting.  I was invited to attend last year's meeting.  It was before San Antonio, before AACR and it was before I really had a grasp on the importance of evidence based anything.  I only knew that the word collaboration was used so many times, I felt the need to turn it into a drinking game.  Virtually.

This year's buzz was about data.  That seems to be the theme of the year, perhaps the decade.  The answers lie in the data.  The data needs to flow in both directions and somewhere in that paradigm, the data is coming from us to those in the science community.  Ergo, the data really is flowing through us.  We must be a part of the process.

Dr. Love, someone for whom I've had the utmost respect and admiration for many years was in attendance.  She closed the meeting but hold that thought for just a moment.  Before that epic event and yes, it was truly epic, she was the disruptive voice of the patient in some of the sessions and she was tweeting like a champ.  She has been at the forefront, speaking out about the need to understand the cause of breast cancer for as long as we can recall.  Now, she crossed the line and she is one of us.

Having had her own cancer diagnosis made her just a little more vocal, a little more disruptive and at many times, had me cheering (silently) when she did what she does best.  Question the status quo.  Don't say it's about the patients if there aren't patients speaking for themselves.

There was such great energy flowing through the Grand Hyatt in NYC.  The Milken Institute and the entire staff at Faster Cures deserve major props for assembling such an exemplary group of people for the panel presentations.  It's hard NOT to feel hopeful, even when I did (again silently) groan at some comments that I found to be a bit condescending.  OK.  One comment.  In one session.  By one panelist.  And the use of the phrase "tyranny of hope" during a discussion about the importance of patient participation.  Groan.  Groan.  If the premise is collaboration, I can tell you, that was a poor choice of words.  It may be floating in the twitter verse.  I groaned with my fingers.

I liked Susan Love's word choice.  Cooperation.  It's more reflective of what must happen.  To some, that may be semantics, but to me, it makes sense.  Cooperation trumps collaboration.  Plus, I was able to put down my virtual shot glass before I might have needed to be carried out of the place.

At the conclusion of the meeting, were four powerful presentations to punctuate the Time Equals Lives initiative.  I know there will be videos of all of them and each one will be worth your time.  They were riveting and I am sure this new segment will be a prominent part of next year's meeting.  I am simply not sure how they will top this year's speakers.  One thing I do know, Jack Andraka will have to clear his calendar because his attendance will be mandatory.

For this audience, the chat that occurred last, is the chat that is of most interest.  The collaboration (and there goes my shot glass....) between DSLRF and Komen has raised more than one eyebrow.  It raised mine.  I wondered how this would play to an impatient and disenfranchised population.  In the spirit of "we need to do something differently," I put my faith in Dr. Love and offered my support from the very beginning.  We've been doing the same thing year in and year out and nothing has changed.  She is the chief visionary officer of the foundation that bears her name.  I'm following a brilliant woman with a vision.

When I heard she would be taking the stage with Nancy Brinker, again, that eyebrow.  And then, Tuesday happened.  I walked into the ballroom where the lunch plenary was being held.  Since my final session was right next door, I arrived before the crowd.  Normally, I'm weaving between tables looking for an empty seat anywhere, tripping over camera equipment or knocking something over with an oversized bag holding notes and every conceivable electronic device known to mankind.

The luxury of an empty room and my choice of table location was foreign territory.  I staked out a good spot and sent text messages to the people I would be joining for lunch.  Table 29.  Just a few tables away, I saw a face that I recognized. Remember my blog about the whole impulse control thing?  Well, my impulse took control again on Tuesday.  Act, then think.  I set my bag on a chair and I walked toward the familiar face.  Within seconds, I was standing beside Nancy Brinker.  Yes, THAT Nancy Brinker.

I have been very vocal about Komen and I have, on a number of occasions, expressed my frustration, indeed, my irritation, over what I saw as an unwillingness on their part to change with the times.  To shift away from awareness, to redivide the financial pie.  On Tuesday, however, I found myself walking toward that table with one purpose in mind.  An olive branch.  A face to face encounter.  An expression of thanks.  I have no idea who has taken up residence in my previously shy body, but despite my sometimes strongly worded posts, all I'll say is this:  It's easy on paper.  It's easy when my fingers fly across a keyboard out into the unseen, the unknown.  It's quite another, to do it in real life.  And yet.....

Suddenly, I heard myself saying, and I meant this sincerely, "I just wanted to thank you for agreeing to take the stage with Dr. Love this afternoon.  It means a lot to know you will be speaking together from the same stage."  She turned and did what we all do at science meetings.  First you glance at the face, and if the person isn't familiar, immediately, your eyes move downward toward the name tag.

I can't recall what happened next, but I think I may have said that she didn't know me, that I am part of the fractured breast cancer community and that I was looking at this moment in time as a very important first step to unite a divided community.  It might be that I simply said that in my head and I am hallucinating that entire part of the conversation.  Two solid days of hard core presentations and my brain did feel as if it were dripping from my ears.

If I am to be brutally honest, I did NOT expect to like her.  I did NOT expect her to pay any attention to me.  I fully expected to be patronized or summarily dismissed.  I recall the interviews and video blurbs all too well.  This is a woman who has been vilified both personally and as the head of the Komen.  Yes, in the spirit of complete and total honesty, and to be fully transparent, I expected to dislike everything about her.  Everything.  Except, I didn't.

She was gracious.  I think she was caught off guard and I think, in broad and general terms, when people are caught off guard, they don't have time to do anything other than be.  "We all want the same things and I think our differences are far less than they might seem."  And she would be right.  It was a brief encounter, over in less than a minute or two and I made my way back to Table 29.

The room began to fill and as our table filled, it was my turn to be caught off guard.  I looked up and standing before me was Nancy Brinker's son, Eric.  "I just wanted to thank you introducing yourself and saying those things to my mom."  I was completely taken aback.  Perhaps this was the moment I realized it is possible for things to be different, that it must start somewhere and that penetrating the bubbles between those at the top and those of us who are in the trenches so to speak, might be a good first step.  One on one, people can listen, people can hear and people realize we are all just people.

When Susan and Nancy took to the stage, no one knew what to expect.  The message was serious, the importance of setting aside differences to work together was at the forefront and it was discussed with intelligence, with humor and with honesty.  "We don't really even like each other...."  or  "I don't agree with ....."   I was so taken by the honesty, the ability to agree to disagree and the notion that it's long beyond the time to change the landscape.  Mistakes have been made but I for one, am making a conscious choice to look forward.

Komen has made a bold choice in the selection of the new CEO of their organization.  Judy Salerno comes with some serious street cred and an impeccable medical background.  She understands what must be done from a science perspective but research is only one piece of this puzzle.  There is community outreach and a tremendous need in many communities for this type of advocacy.

Digging in of heels on one side and angry flash mobs on the other is not the way to solve our problems.  This type of behavior has resulted in two things, countless pairs of destroyed shoes (and I think I've established my love of shoes so this is, for a shoe lover, a tragic event) and a poisonous anger that has stood in the way of progress.  And, as someone who is most impatient, the lack of progress is the true tragedy.

I have chosen to stop digging with my heels and with my thoughts, too.  I have chosen to step back with my favorite pair of shoes on my feet and watch for what's next.  Nancy Brinker used a telling statement.  "It has been said that when two people always agree, one of them is irrelevant.  When both people always disagree, both of them are irrelevant."  We are all being irrelevant if we continue in the insistence that someone must be right and by default, those with whom we disagree must be wrong.

As for the issue of mistakes?  Is it necessary to continue to rehash with "Yeah, but.." or are we better served by taking the higher road?  I live by a motto that I found on a plaque many months ago and this is the manner with which I will approach mistakes that are in the past.

There are many chapters in this book.  Within each chapter there are many pages.  The needs of the metastatic community are closest to my heart.  There lies the greatest urgency.  On the other end, prevention, or perhaps more appropriately labeled, interruption.  On that end, lies the needs of those for whom I have a personal and highly emotional stake.  And in between, those with rarer forms of the disease, the underserved, the uninsured, the underinsured, those in treatment who drag themselves from their beds daily to care for little ones.  And the money.  And making sure it is wisely spent.  The need to stop turning a disease into a spectacle.  Trivializing it, sexualizing it, minimizing it.

It's a big book.

Breast Cancer.

And it's time we all share in the contribution to its contents.  Together we are stronger and there is room for all of us to voice our opinions and to be respectful of those whose views may differ from our own.

This is an EPIC beginning.  I may choose to remain a skeptic, or I may choose to turn a blind eye to the past.  That choice is of far less importance and time will tell whether I chose wisely.  What matters?  I am choosing an open mind and eye toward change.  Hate for the sake of hate is not the way to fix a decades long problem.  For that matter, neither is introducing religious or political views.  Disease doesn't discriminate based upon political affiliation or religious views or lack thereof.

Change can only happen if we all make a conscious effort to change.  It's time for us to preserve our shoes.  Shoes matter. Walking in the shoes of another matters.

Plus, I'm all about the shoes and seriously, I hate seeing all of the shoes that have been destroyed over the years.


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IT'S A TWIT STORM FOR @FASTERCURES #P4C2013

I'm sitting in a hotel room, getting ready for two days of meetings and panels.  And lots of collaboration.

Faster Cures has put together a spectacular line-up of sessions.  My fingers are on ice.

If you are active on twitter, be sure to follow @FasterCures and watch the meeting hashtag: #P4C2013

What's is all about?

The complete Partnering For Cures agenda is on the conference website.

Just Watch!  And I forgot, I have a bit part in this video.

Yes, there's an energy in the air around here and the energy is palpable.  We're on our way......



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WHITE **IS** THE NEW PINK #LCAM2013

It's midnight on the east coast of the US.  Gone are the witches of Halloween.  It's time to roll up our sleeves and make as much noise this month about the LACK of color as we did last month over the pink haze.  Breast cancer EDUCATION month is in the books.

Now, it's time to stand beside those for whom few are willing to speak.  Few, that is, until Deana Hendrickson took to twitter using the name @LungCancerFaces and took the lung cancer community by storm.  She single-handedly began a campaign to shine a light where there is only darkness.  She has started a movement on twitter and in a very short time, has built a solid community.  She is determined and I am awestruck by her will and her tenacity.

I am honored to present Deana, kicking off Lung Cancer Awareness Month 2013.  I'm all in.  Be on the lookout for information on twitter which I'm sure will be appearing throughout the month under #LCAM2013.

Let me introduce myself. I’m not a lot different than most of you. I’m about as average as they come: Nice husband, good kids. I give to charity, recycle, hate ironing with a passion. I’ve put on a few pounds. Nothing out of the ordinary.

All in all, I’m very happy with my life, except for the fact that I AM MAD AS ALL HELL.

When did this anger problem start? Oh, about the time my mom was diagnosed with advanced lung cancer. Funny thing is, once I got over the shock, it wasn’t the diagnosis that pissed me off. It was what I learned about the disease. Could the Internet be to blame for my problem?

What did I read? I read about the incredibly lousy odds she had to live beyond a year, unless she had an actionable genetic mutation (She didn’t. She died less than 10 months post diagnosis). That tore my heart out, but it didn’t put me in my current state. Ah, but then I read about the almost bizarre lack of federal research funding for lung cancer. Hmm, I thought, could there be a connection between the two?

At that point, I was only somewhat disturbed, but not completely off the cliff.  Then I looked at that stupid graph comparing federal research dollars spent per cancer death. Colorectal 4 times as much? Prostate 8.5 times as much? Breast 14 times as much? Wait, but lung cancer is the number one cancer killer in the US and the world. 160,000 people die every year in the US alone. Huh? I went off the deep end.

After I came to, I read about the undeserved stigma that people with lung cancer face. I like to call it the “Did you smoke?” factor. Forget about rude. I can handle rude. The real issue is that stigma kills: It keeps research funding for lung cancer low because people think that if everyone just quits smoking, lung cancer will miraculously go away.

Ask Linnea Duff Life and Breath if that’s true.

Ask Janet Freeman-Daily Gray Connections 

Ask Jessica Rice Stage IV 

Ask Tori Tomalia A Lil Lytnin' 

Ask Emily Bennett Taylor EmBen Kicks Cancer 

Ask Kim Wieneke Aquarius v. Cancer 

They’re all never-smokers with metastatic lung cancer. Ask them.

And my mother? She smoked. She started when she came to this country as a teenage Holocaust refugee. She wanted to assimilate. Everyone smoked back then. Even Doctors. I can deal with her death on a philosophical level, not because she was a smoker and therefore deserved to die of lung cancer, but because she got to see her six grandchildren all grow up, which is a privilege denied to many. I can live with that.

BUT, if someone out there thinks my mother was somehow “asking for it” because she smoked, they need to think again. She didn’t deserve it any more than the terrific ladies I’ve mentioned above. No one deserves this horrible disease. No one wants it. No one asks for it. NO ONE.

So, now you know why I’m so damned mad all the time. Some of you probably think I need help. You’re right. I do need help. Your help. Today is November 1, the first day of Lung Cancer Awareness Month. Don’t look away. Don’t turn on the TV. Don’t forget them. Please read their stories. See their faces. They’re no different than you and me. Help me get the word out on the street about lung cancer.  Lung Cancer Awareness Month needs the public service announcements, the media coverage, the merchandising, the attention. These people deserve to have every damn building lit up in their honor. Why did the Empire State Building turn them down? Where is the big White House ceremony (Yeah, I know it’s already white)? You get the picture. Help me help them. Together we can move mountains. I really do believe that. I hope you do, too.

AM again:

I do believe this can be done and I do believe we can change the stigma and begin to an education campaign.  This space is open to anyone who might like to share anything on behalf of or in support of the lung cancer community.  Send me an email or post a comment here and I will be in touch.

And, the answer to the question, "Did (s)he smoke?"   .....  

It goes like this.....

 "The truth is, (s)he has lungs.  That's really all you need."    

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