TURNING ANGST AND ANGER INTO ADVOCACY

My mom is fine.

I am fine.

There are other things happening in my life that are not fine.  Indeed, they are what some might call a pretty big deal.  As much as I'd like to share, it's not my story to tell.  I can, in good conscious, only share that part of the story which is mine to tell.

I've been on advocate overload.  It had been building for several days and it crashed all around me with a thundering crescendo on Wednesday morning.  Since then, I've been in the medical maze.  Doctors, administrators, social workers, nurses, one hospital system and then another.

Today, a plan is in place. Everything should be resolved in a fashion that is both acceptable and beneficial to meet the needs of the person who is at the center of this, The Patient.  It may be easier said than done although as of 4PM yesterday, it seems the right people are now in the loop.  The operative word here is SHOULD.

You know how those plan things go.  We make plans and somehow life gets in the way..... or to repeat a quote I've heard many times over the course of the years, "We make plans and God laughs."  Whether you believe in God or not, I think we can all agree, when our plans are made, unless we are fully in control without requiring anyone else's participation, plans go awry.  Thus, God laughs or the stars mock us or karma takes over or, quite frankly, Shit Happens.  If things derail at any point, I will be back on my soapbox demanding action and holding every person accountable to carry out that which is within their control, that which I was assured would be handled.

Interestingly, my greatest ally and the most compassionate, most helpful person in trying to untangle a very complex mess has been the representative from the health insurance company.  Go. Figure.  Technically, since I am not on HIPAA forms, people can only listen.  They can not speak but I was seeking generic advice on how to proceed in this situation.

It is essential to give a shout out to United Healthcare/Oxford.  The woman who took my call never cut me off.  She listened.  JUST LISTENED.  She listened to the entire story without once interrupting me to ask a single question.  She asked her questions when I was finished.  My chemobrain is beyond thankful since I didn't lose my place and forget to mention what might have been an important point.

And then, she asked me if she could make some calls on my behalf.  Instant eye roll on my part except, she continued.... would I mind remaining on the line while she made those calls?  In other words, she was the first person who didn't give me the "I'll call you back."  She was the first person who was going to get me answers before concluding the call.  And she delivered.  

After a number of bald faced lies, half truths, misinformation, haughty "I'm in charge now" doctors, the latter of which pushed me RIGHT over the edge, I fully detached all emotion.  I leaped into full action mode when Dr. Haughty replied to my question about which hospital department handles issues regarding best interests of THE PATIENT with this statement, "No such department exists in this hospital."

Within FIVE minutes I was on the phone with a hospital advocate who was trying to prevent me from lodging a formal complaint.  I allowed the representative to placate me solely out of concern for the patient who was and presently is, still under their care.

What began at 9AM on Wednesday should be brought to an acceptable conclusion before the end of the day.  By 4PM yesterday, after many calls with me leading the line dance, everything is still being controlled by others.  However, if "others" don't do what is expected, "others" will find themselves in a very bad position.

I may only be a blogger.  I may write "Graffiti with punctuation."  But I know how to make sure my graffiti is accurate and is heard by a large number of people.  If my efforts over the past 48 hours are not  fruitful today, yes, I will be kicking ass and taking names.  WAIT.... I already have all the names.

Don't cross me.  I know my rights.  I know the rights of patients.  I understand the responsibility of those within the healthcare system to make certain they, and their representative doctors, administrators, social workers are conducting themselves in a manner that is consistent with those very rights.

To steal a quote penned by William Congreve, recently paraphrased by Katie Couric now further fine-tuned by me....

Hell hath no fury like just one type A woman pissed off at anyone who is deliberately and purposefully thwarting any and all attempts at effective advocacy.

There is a life at the center of this.  One Life.  One Patient.  But that's how we advocate.  One person at the time.  This one's personal.  From anger to advocacy.

The update:

As I was ready to publish, the call arrived.  Everything is resolved.  The next chapter will begin at 1PM.  This better go off without another hitch.  Period.

The lesson:

KNOW your rights and don't ever be afraid to open your mouth.  YOU know what's best, demand it.

PLEASE SIGN #ALLTRIALS

Miss me?  I'm not supposed to apologize for not maintaining my blog schedule.  It's considered poor practice.  I'm sorry anyway.

Lots and LOTS happening.

FIRST AND FOREMOST:  My mom had her 3 month follow up PET scan last Friday.  Yesterday, she was told the area is responsive.  I don't remember what the exact words were but her appointment is  next week so I'll get copies of the reports.  Bottom line, I was hoping for "stable."  I'll take stable.  To hear responsive was great news.  Also, her liver enzymes are stable.  She was given a full dose of medication for the first time since March and they did not spike.  More good news.  Very thankful.  And thanks to all the tweeps who sent love my way when I took that to twitter (while mom was still talking to me).

Second and important!!  METAvivor.  If you are able to help in any way, please read the original blog post and contact CJ. In fact, even if you READ the original post, go back.  There is a video interview with CJ that I embedded into the post after it was originally published.

Little help, big help, in between help.... many hands lighten the load.  We are still developing the program.  Be patient and if you have ideas, we will be all ears.  CJ (on the right) is in charge of this national effort.  I'd like to believe that this photo of our FIRST real life meeting is what sparked the idea to take the effort nationwide.  We need to raise awareness about Metastatic Breast Cancer and we need to see metastatic disease properly funded.  Urgency.

And, while I'm on the research thing...... PLEASE consider signing the petition at All Trials.  It's worth a click.  All Trials Reported--ALL Results Registered.  Read.  That's not the present protocol and there is information to be gleaned, even from "failed" trials.  Read, Sign, Share?

Tomorrow, I am giving a social media presentation in the afternoon to some friends, prostate cancer advocates I met at AACR.  In the evening, I will be on a panel at the Health Care Pioneers meeting.  Scroll.  An exciting healthcare innovation panel.  Have you taken Medivizor for a test drive?  No?  Click.  Upper right.  It's getting better and better.  Continues to impress.

And while I'm at it.... how about Health of Women Study?  Did you join yet?  No??  GO.  And check the Army of Women studies, too. See if you qualify for any of those.  It works.  Just look.... I'm in this study which was closed rapidly! We MUST take this in a new direction.  I'm tired of the same old same old.  It's not moving quickly enough for me.  Let's try some other avenues.

All for now.  I left you with lots of assignments.  All important.  Are you with me???

KUDOS JACK ANDRAKA - THE ONE TO WATCH

Because I wrote a blog post about Jack over a year ago, it has been an absolute thrill to watch what is unfolding in his life. The initial blog post was written shortly after he was awarded the grand prize at the Intel ISEF.  He was 15 years old.  The beginning of this is worth watching.  Really, the whole thing is worth watching even if MOST OF US don't understand what he is saying until he gets to the 100% accurate part.



Fast forward to February.  I see Jack's name pop up in a twitter feed.  He was getting some well deserved recognition and that was when I "met" Jack.  He was in a chat and I was beyond impressed by his poise.  It has been said that some tweet chats can be a bit like drinking water from a fire hose.  He was answering questions as rapidly as they were being tossed his way.  I was delighted to become acquainted with Jack.

Between February and now?  Jack has been all over the world.  It's been a little like playing "Where In The World Is Carmen Sandiego?"  That's the joy of twitter.  Chatting from anywhere there is an internet connection and he's been everywhere.  Speaking.  All over the world.

Jack has a Wikipedia page.  He's SIXTEEN.  He's humble.  And yesterday? Where was Jack??

He has captivated the world and the recognition is well deserved.  The sky is the limit.  The only thing I know?  I want to be in the audience when he is awarded the Nobel Prize.  It's not a question of if....it's a question of when...

Congratulations, Jack!  You are an inspiration.  I can't wait to see what's next......

MY CHOICE WORKS FOR ME, BUT NOT FOR "ME"

I don't know why I'm doing this.  I've already established my issues with celebrities using their voices when it comes to illness.  Their own illness.  To comment on someone else's choice, unless you are a doctor, best left alone.  A simple, "She made the choice that was right for her."  Leave it there.

Yes, we are back on Angelina Jolie and the comments made by Melissa Etheridge stating that the choice made by AJ was not a brave choice.

This is exactly what ME said in her interview with Washington Blade:

"I have to say I feel a little differently. I have that gene mutation too and it’s not something I would believe in for myself. I wouldn’t call it the brave choice. I actually think it’s the most fearful choice you can make when confronting anything with cancer. My belief is that cancer comes from inside you and so much of it has to do with the environment of your body. It’s the stress that will turn that gene on or not. Plenty of people have the gene mutation and everything but it never comes to cancer so I would say to anybody faced with that, that choice is way down the line on the spectrum of what you can do and to really consider the advancements we’ve made in things like nutrition and stress levels. I’ve been cancer free for nine years now and looking back, I completely understand why I got cancer. There was so much acidity in everything. I really encourage people to go a lot longer and further before coming to that conclusion."


Yes, that statement created a media uproar that I missed.  Apparently Brad Pitt made a comment and I have NO idea who else jumped in to the fray.  The follow up comment made by Melissa Etheridge says the following:

"I don't have any opinion of what she 'should have' done. All are free to choose. I only objected to the term 'brave' describing it," Etheridge said in a statement to ABC News. 

That's the end of the war of words.  And here are my observations (did you seriously think I would not express an opinion??).  This has nothing to do with AJ's choice or ME's opinion.  It has to do solely with the statement that is in print for all to see.  My objection isn't over bravery or fear (although I do fall on the bravery side of that equation if you are interested).  I'm not going to comment about whether or not that initial statement confers an opinion on the part of ME (all I'm sayin' is read it carefully and you decide).

Let's be clear.  Melissa Etheridge is a musician.  Angelina Jolie is an actress.  Fans tend to hang on to their words.  As a responsible advocate who understands the importance of evidence based medicine not opinions or things that seem likely, I am going to address the comment.

•  "My belief is that cancer comes from inside you and so much of it has to do with the environment of your body"  (Yes, I agree-tumor microenvironment or as Dr. Love says, "the neighborhood")
• "It’s the stress that will turn that gene on or not." (ABSOLUTELY NOT TRUE not matter how much you may think this is the case, there is no evidence to support such a statement although the importance of reducing stress can not be understated for plenty of reasons.  Activating a mutated BRCA gene to turn on is NOT one of them.)
• "Plenty of people have the gene mutation and everything but it never comes to cancer so I would say to anybody faced with that, that choice is way down the line on the spectrum of what you can do" (GROSS MISREPRESENTATION of the very real risks associated with a BRCA mutated gene.  The risk in the general population is 1 in 8 at age 70.  BRCA mutated patients?  6 in 10 [and earlier onset?].  In other words, the risk is five times greater in patients with BRCA mutations.)
• "and to really consider the advancements we’ve made in things like nutrition and stress levels."  (Stress, previously discussed.  Nutrition?  This is sounding like the blame game.  There is NOTHING we can do to eliminate risk through nutrition or by avoiding potential environmental factors that may be within our control, like for example, moving far from a city where the air is less polluted. These measures will only reduce the risk by a very small percentage.  I have many things swirling in my head regarding numbers so I'm going on the high side. I think we are in control of perhaps 30% of our cancer risk across ALL cancers through behavior modifications. The rest?  A crap shoot.  And not with such great odds if you happen to have a mutated gene.  And medical advances, treatment options, chances of metastases... not much has changed in decades.)
• "I’ve been cancer free for nine years now and looking back, I completely understand why I got cancer." (Really???? Did she REALLY SAY THAT????  Yes, she did.  I'm fairly certain her understanding would be appreciated by the thousands of researchers who have yet to crack that code.)
• "I really encourage people to go a lot longer and further before coming to that conclusion."  (No.  What you should be doing is encouraging people to do their homework and make the choice that is right for them.  This sounds like she may not be telling AJ what she should have done as she states in her rebuttal comment, but she IS telling the rest of us what she thinks WE should do.)

And, if you make the same decision as AJ, you will be doing so because you made the most fearful choice, not the brave choice.  I suppose I am a big coward, but I can assure you, I made my fearful choice based upon lots of thought, lots of questions and lots of research.  I found my notes from 2006 when I was looking for the copies of my BRCA results that I'm submitting (along with my saliva) to a researcher as part of a clinical study.  I think they were pretty good questions for someone who didn't know a damn thing about breast cancer aside from the fact that my mom was treated in 1987 and it sucked.  I was an e-Patient before I knew what that even meant.  Engaged, Empowered.  What I'd call the choice? AGONIZING.  And, obviously, well thought out and INFORMED.  And No One Else's Business.  And this is why celebrities should keep their opinions to themselves.

METAVIVOR SEEKING VOLUNTEERS, I'M IN

How about you?  Part of what's been happening behind the scenes has been THIS!  METAvivor is now seeking nationwide volunteer support.  I hope everyone who reads this blog knows I only support those efforts I believe have the potential to change the present landscape.  METAvivor is near and dear to my heart.  Please read CJ's message and if you are interested, email her at the address listed below.

I'm quite thrilled to announce that I have agreed to coordinate the efforts of NYS.  It's a big state and what may work on Long Island will likely not work in NYC and definitely won't work upstate.  Actually, it's quite disturbing to say that not too much works on Long Island.  Everyone has their own coalition or non profit.  TOGETHER we are stronger, folks.  We Must Work Together.

My only footnote?  Scorchy and Upstate AM, you are already on my list.

For everyone else, no matter where you may be located, if you are interested in contributing any assistance for whatever time you may be able to spare, do contact CJ.  This is in the early stages so please be patient.  We will shake things up. Disruptive to be constructive.

Are you with me?

Add on:  CJ just emailed me to remind me that NY, NJ, Puerto Rico and the US Virgin Islands are all part of my area.  I did know that, I got a little color blind reading the map!  PLUS.....  This is waaaay cool....  See that news feed to the right of your screen.  It changes.  Just now, there was a story about "Advanced BC Community" so I clicked.  Look what I found!  It's CJ in an interview for a New Orleans TV station:

Join the effort to raise awareness and achieve proportionate funding

for metastatic breast cancer research

METAvivor Research and Support is a 501(c)(3) all-volunteer, patient-founded and led non-profit organization devoted to a) raising awareness of metastatic breast cancer (MBC), b) funding critical MBC research and c) promoting the concept that 30% of every organization’s  breast cancer research funds should be devoted to MBC research.  These are the facts:

·      30% of all breast cancer patients metastasize

·      97-98% of all metastatic breast cancer (MBC) patients succumb to the disease

·      Annual MBC losses in the US average 40,000, including about 500 men

·      2% of US cancer research funds go toward metastatic cancer research

·      Significant progress won’t happen at 2%, but will happen with proportionate (30%) funding

THE RESEARCHERS:  Several hundred brilliant career metastasis researchers, members of the Metastasis Research Society, remain dedicated to the stage IV research despite immeasurable obstacles.  Obstacles include a horrific lack of funding, a large cancer community focused almost exclusively on prevention or early detection, a prejudice against stage IV cancer research overall and an unwillingness to change the status quo.  Our lives depend on getting their proposals funded.

OUR GOALS:  

1^st:  We want 30% of all breast cancer research funds dedicated to MBC research.  

2^nd:  We want to see out-of-the-box research funded -- research that will extend our lives by years and decades, not weeks and months as is presently the case.

3^rd: We want our disease rendered a controlled, manageable condition, such as diabetes or HIV – so that we can live long, happy, productive lives.  We can achieve this with 30% funding.

THE PLAN: METAvivor is launching a nationwide effort to raise awareness of our disease and to convince the public and our policymakers that the funding of metastatic cancer research must be increased to 30% across the board.  We are establishing 10 regional teams, with representatives from every state.  Four regions are already started.  Now we are going public and asking for volunteers.

JOIN our effort.  Patients, family members, caregivers, friends and others supporting our cause are welcome.  Give us your talents, your passion and whatever spare time you have.  Be part of a solution that will give back life to countless persons with MBC.

Want to know more? Send your name, email, phone number, city and state to cj@metavivor.org. 

ON MY WAY TO #140you -- MEET ME THERE !!

The feed should go live at 9AM Eastern.  Hopefully, I'll be in my seat and not watching from my iPad. NYC traffic.  Always dangerous.  I'm giving myself two hours to commute.  The time has come for me to begin using mass transit.  Except, there was a little issue last night at Penn Station with a train stuck, a little derailed.  Not sure how something can be a little derailed.  Either it's on the rail or it's not.

Which begs the question......What's worse?  Traffic anxiety or crowd anxiety in a packed commuter rail station on a hot day.  I think I choose traffic and my car and the radio.  And I keep my fingers crossed.  A hotel would have been a good option.  Or better yet, an apartment in Manhattan.

If this link doesn't work, try the direct feed on the #140Conf website.  The latest schedule is here.  Hope you'll check back and listen live!  Today... and TOMORROW.....  See you back here on Thursday.


  Streaming live video by Ustream

TO WATCH: #140YOU FROM @140CONF AT @92Y

Faster than a speeding bullet.

More powerful than a locomotive.

Able to leap tall buildings in a single bound!

Superman?  Yes.  And what else?

TWITTER.  Either you're a fan, or not and if not, the title of this blog post must having you thinking what the *&^$%&& is up with the @@@@ and the #####.  But twitter.  Each one of those super statements is an aptly metaphoric description of the 140 character twitterverse.

The messages move quickly.  A well constructed tweet can pack quite a punch.  Seen by enough people and shared by a few others and yes, twitter is one of the tightest spring boards available today.  Information is shared globally.  In real time.  Twitter doesn't leap buildings, it jumps continents and sails across oceans in milliseconds.

Meeting Tweeting is definitely twitter on steroids and can be mighty challenging for those of us with (ahem) attention issues, working memory deficits or to be completely blunt: Chemobrain.  Yet, it can be done.  And, it WILL be done tomorrow for sure and likely on Wednesday, too.

June 18th and 19th.  New York City.  The 92nd Street Y.  The State of Now is the theme of the 140 Conference which will highlight health, wellness, fitness and food.  I was graciously offered a press pass and I enthusiastically accepted.  Twitter is not only a conduit for moving ideas and news, it's a bridge between people and that is how and why I will be at the 92Y tomorrow.

I'm anxious to see what Tal Givoly has to say about Medivizor which continues to impress me several times a week with notifications about new research and clinical trials and discussions among those of us interested in the information. Evidence based information. He will be giving a ten minute talk tomorrow.

Dr. Kevin Campbell is also speaking.  I love this piece he wrote about patient blogging and how it holds "unlimited possibilities for improving health and battling disease."  Then, there is Katherine Leon, someone I know from twitter and now I will have the opportunity to meet her in real life.  #IRL in twit talk.  She and I shared a guest spot on a tweet chat about a year ago.  She's got one very smart young son.  He doesn't care for those big pink ribbon magnets he sees on cars.  I believe he told her those people are using the ribbon for swag.  Brilliant kid.  Katherine is presenting with Inspire, an online support community.  Katherine is no stranger in speaking about her experience with spontaneous coronary artery disease.

There will be a live feed from the event.  It can be accessed here.  It begins at 9:00AM.  The schedule is available on the 140 Conference event page.  I'm ready to be wow'd.  And then, there's twitter.  I hope I  can keep up.  If you aren't tweeting or, as I like to call myself, a twIdiot, you may notice something different on the right side of this blog.  It's a twitter feed.  Mine.  Anything I'm hearing at the 92Y will be tagged #140You.  Tomorrow!

Today, there may not be much.  I have to prepare for two presentations next week.  Plus, it's expected to be sunny and in the 80's.  It's a day for gardening and swimming and fresh air.  And a laptop underneath the umbrella on the patio.  And at 9PM, that feed on the right should be flying for about an hour.  With #BCSM.  Then bed, then drive, then #140You.  Stick around and stay tuned......

MY DAD--THE WIND BENEATH MY WINGS

Happy Father's Day to each and everyone out.  I have officially entered the my annual month of wistfulness.  Between today and July 19th, the day my dad died, there are reminders.  His birthday was July 3rd.  I think of him each and every day.  He is the wind beneath my wings.  He is my hero.

Uniting Against Lung Cancer did their annual Kites for a Cure event and as I shared in past posts, we had a kite flown in his honor at the inaugural event in 2007.  Little could we know he would be gone in less than two months.  This year, I had a kite flown in his memory.  I just received the photographs from UALC.

In a bit of a rather bittersweet moment, I had something else happen last week.  Each year, we award a scholarship in my dad's memory at a local high school.  I hope to share the story of the young woman who was this year's recipient.  When we talk about how cancer steals lives, her story punctuates that message.  I will obtain her permission first first, but stolen is an appropriate word in all cases.  In hers, especially so.

As I was pulling into the school parking lot for the awards ceremony, which began at 7:30 and you can see the time on the third photo, the tears began to spill.  As I sat in the auditorium waiting to be called to the podium, I found myself blinking back tears more than once.

To my dad, I miss you terribly.  To Karen, I see Yvonne dedicated a beautiful post to Hugh.  And, to Frank Terrazzano, I send you comforting thoughts.  His daughter Lauren continues to inspire me each and every day.  Her kite says precisely that......