Friday, November 30, 2012

YOU RALLIED AND YOU MADE A DIFFERENCE

There is only one take away from Partnering for Cures.  Collaboration.  Actually, there are many take aways but the running theme is collaboration.  The name fits.  It's about ideas and it's about turning the ideas into reality.  It's working together across all sectors.  This was not a bunch of people talking to hear themselves talk.  This was brainstorming, coloring outside of the lines, using every crayon in the box and finding ways to make things happen.  It's about cancer and Alzheimers and ALS and diabetes and on and on....  I will leave later today, hopeful.  Patients matter.  Our voices matter.

I owe a debt of gratitude to the folks at Faster Cures for extending the invitation to me.  I've have learned much from sitting in on the sessions.  I hope to continue to learn and I know I will continue to advocate.

I have been so focused on what has been happening at this conference, I missed a very important comment.  Thank you, and that means ALL of you, for reading and for reaching out when I asked for your help.  Your words meant so much to me and I could only hope that "anonymous" was still reading.  I was so distracted, I missed her beautiful comment.  The thanks belongs to all of you, along with MY thanks for jumping in and offering love, caring, concern and support.

This is a follow up comment from "anonymous".... because of the love all of you so freely gave of yourselves.  It's about extending a hand.  The smallest action can have great impact.  Thank you, anonymous, for taking the time to let me know you are okay.

In case anyone missed the comment as I did, it's copied below..... and now, I've finally exhaled.  It's a sigh of relief.  The circumstances in our lives might be beyond our control, but the support of friends can ease the burden.  There should be no doubt in any of our minds as to the power of a collaborative effort.  Especially when this is the result:  

I'm so sorry your friend lost her child. I have no words for this sorrow. Just tears. I'm going to try to keep going because I do think people care and sometimes that alone is enough to pull me through. Thank you for letting me voice my true feelings about what I'm calling a lesson in futility. The nice thing is that people care. People I have never met. People that have gone through it and have roughly the same problems. They care. You care. And it helps me. Thank you. Love, healing, health and caring to you all. Maybe some money too. It kind of helps.


Thursday, November 29, 2012

WOMEN MATTER AND THIS IS WRONG ....

Today, as I am running around the Grand Hyatt, hopefully gathering some wonderful information to share tomorrow, I am stepping well out of my comfort zone and BEING AN ADVOCATE.  I'm risking my relationship with an institution I hold very dear to me.  I hold everyone in such high regard, but the well-being of patients trumps all else.  And so.....

I recently learned there is a new policy in place regarding hospital stays post mastectomy.  It is not an insurance mandate. It's hospital policy at one hospital (that I know of at the moment) and, it appears it's being driven by fiscal concerns.  Can't stress this enough: I don't know how many hospitals are doing this, I'm just discussing what I learned about ONE hospital.

Breast cancer surgical patients will be discharged from the hospital 24 hours post surgery.  This includes bilateral mastectomy with placement of tissue expanders.  I had that surgery and I can assure you, there is NO WAY I was equipped either physically or mentally to be released from the hospital in 24 hours.

This is a No Exception Rule.  You are not permitted to cry to your doctor that you need just 12 more hours.  Unless there are obvious signs of infection, fever or uncontrolled vomiting, don't even bother trying.  No amount of pain, lightheadedness, nausea or anything else for that matter, is reason enough to forgo hospital policy.  No Exceptions.  That was made indisputably clear when the information was shared with me.

I am saddened by this and I am on many levels, outraged.  This is a major cancer center.  This is an institution whose fellows must participate in "talk training" before completing their fellowship.  Doctor patient communication is high on their list of priorities.  It is one of only a few formal training programs to teach new doctors what we lay folk call "bedside manner."  This is a hospital that has more programs available for current patients, former patients, caregivers of patients and the quality of those programs is like nothing I have seen or heard about, in any other hospital, from any of the other advocates with whom I speak.

This is a place where a holistic approach to care is not only embraced, it is encouraged.  Chairside acupuncture or reflexology during chemotherapy.  Appointments can be made with Reiki masters and massage therapists during a hospital stay.  And this care will be provided in your hospital bed.  Integrative medicine is so important, it is housed in its own building.  Patients who are post treatment can utilize the services (there is a fee for outpatient care) for as long as they like.  Guided meditation, yoga..... you get the picture.

I am involved in many different volunteer activities with several organizations.  I have met and collaborated with advocates from all over the world.  No, I'm not "all that" but in a world where social media affords us this opportunity, it's easy to connect with like-minded people and join forces for the greater good.

A few years ago, there was tremendous hype and equally vocal pushback to stop "drive through mastectomies."  Laws were passed in several states to compel insurance companies to step aside and allow doctors to do what was best for their patients.  Within those laws, the patient has an equal voice.  Some states mandate 48 hours.  New York is not one of those states.

The NYS law reads as follows:

"HMO's and insurers that provide coverage for inpatient hospital care must provide inpatient hospital coverage for a mastectomy.  After a mastectomy, a woman has the right to stay in the hospital until she and her doctor decide she is ready to go home."

And there's the catch.  In the world of empowered patients,  self advocacy, patient centered care, personalized medicine and patients as partners, the decision making process regarding what constitutes "ready to go home" involves only one person.  And, it's not even a person.  It's a policy.  A decision between a woman and her doctor which was previously dictated by insurance companies is now being dictated by hospital policy.

This is a gigantic backward step and it is a step being taken by one of the finest institutions in the world.  I am bitterly disappointed.  I learned of this policy a couple of weeks ago even though it was put into place two months prior.  I waited to get definitive information before sharing my disappointment.  Faced with a surgery that leaves us scarred physically and emotionally, likely still crippled with fear over a cancer diagnosis, staring at drains hanging from their bodies, women will now be told they don't get a voice in their own care which is their right under the laws of the state of NY.

If the woman says yes and the doctor says no in accordance with "hospital policy," I'm guessing the insurance company will have enough medical information to deny to cover the additional time.  In other words, leave quietly OR pay the bill OR spend the next several months fighting for coverage through the NYS appeal process.  That's just the thing to throw at someone who is physically compromised, emotionally drained and quite possibly facing chemotherapy.

I did not have to go far to read the writing on the wall and it is crystal clear.  Some policy decisions may be driven by cost and that most certainly appears to be the case with this policy.  We have once again, ceased being women with diseases that require what most of us see as radical treatment.  Instead, we are ONCE AGAIN, tied to that financial bottom line.

As my heart sank for those whose care, in my opinion, is being compromised by "policy" THIS hit my medical feed:

From Medical News Today, the title of the article?

Over 40% Of Post-Op Complications Occur Following Discharge


I cut and pasted the article exactly as it appeared on my screen.  In other words, where there is bold type or any other emphasis, that is not MY emphasis.  It is the opinion of the writer.  The part that is most upsetting?  When they examined the TYPES of procedures where complications occurred, 78.7% of breast procedures had post discharge complications.  I get it.  They are playing the numbers.  I'm sure they examined their own incidences of post-op complications before boldly (and quietly) instituting a policy that I find rather distasteful.  I am not raging against the machine because I'm secretly hoping that sticking to the point without going over the top might open a dialogue.  And I'm secretly hoping this new policy will be revisited and revised so that breast cancer patients can continue to receive the type of care that is consistent with one of the finest cancer hospitals in the world.

And now, the article which I hope will bolster the case to rethink what I believe is an AWFUL decision, in its entirety:

A new US study finds that over 40% of complications after general surgery procedures arise after patients have been discharged, with three quarters occurring within the first two weeks of leaving hospital. At least one expert suggests the study highlights the importance of focusing on patient needs and calls for insurers to invest the proposed savings they would make into research for safer surgery.

Lead author Hadiza S. Kazaure, of Stanford University at Palo Alto in California, and colleagues, analyzed 2005 to 2012 data from the American College of Surgeons National Surgical Quality Improvement Program, and found, overall, 16.7% of general surgery patients experienced a postdischarge (PD) complication, and 41.5% of complications occurred postdischarge.

They write about their retrospective study online in the November issue of Archives of Surgery, a JAMA Network publication.
Postdischarge Period is Vulnerable Time
The period following discharge from hospital is a vulnerable time for surgery patients, and it can also be an expensive one for the healthcare system when patients have to go back into hospital because of a complication related to the procedure.

In their background information the researchers refer to the Patient Protection and Affordable Care Act, which says one of the targets to save costs is to reduce avoidable postdischarge hospitalization.
The Study
For their study, Kazaure and colleagues examined postdischarge (PD) complications that occurred within 30 days of leaving hospital in 21 groups of inpatient general hospital procedures. They were particularly interested in the types of procedure, the rates and the risk factors for PD complications.

The data they used covered 551,510 patients whose average age was nearly 55 years.

They found 75% of PD complications occurred within 14 days of leaving hospital.

They also note:

"We found that more than 40 percent of all post-operative complications occurred PD; approximately 1 in 14 general surgery patients who underwent an inpatient procedure experienced a PD complication."
Varied By Type of Procedure
When they ranked PD complications by type of procedure, at the highest end they found 14.5% were for proctectomy (surgery involving the rectum), 12.6% were for enteric fistula repair (abnormal passageway repair) and 11.4% were for pancreatic procedures.

When they looked within each type of procedure, they found 78.7% of breast procedures had PD complications, followed by 69.4% of bariatric, and 62% of hernia repair procedures.

For all procedures, they found surgical site complications, infections and blood clots (thromboembolisms) were the most common complications, while a complication while still in hospital increased the chances of having one after discharge (12.5% compared with 6.2% without an inpatient complication).
Re-operation Rates Higher
The researchers also note that patients with a PD complication had higher rates of re-operation (17.9% compared with 4.6% without a PD complication).

Death was also more likely within 30 days after surgery in patients with a PD complication (6.9% versus 2% without a PD complication).

And the highest rates of re-operation and death were among patients whose PD complication was preceded by an inpatient complication.
Need to Improve Quality in Inpatient General Surgery
The researchers conclude their study shows "PD complications account for a significant burden of postoperative complications and are an important avenue for quality improvement in inpatient general surgery".

They call for more research to develop and explore the usefulness of a cost-effective and "fastidious" postdischarge follow-up system for surgical patients.

Desmond C. Winter of St. Vincent's University Hospital, Dublin, Ireland, notes in an invited critique of the study published in the same issue of the journal, that every surgeon will read the paper from Kazaure and colleagues with interest, because "complications are the statistics that define us all".

He says the need to reduce disease is what drives the scientific evolution of surgery.

"Patient needs, not financial penalties, should be everyone's primary focus. Let us see further advancements in surgical care through research funded by the proposed insurer savings and together strive for safer surgery," urges Winter.

Written by Catharine Paddock PhD
Copyright: Medical News Today
Not to be reproduced without permission of Medical News Today

Wednesday, November 28, 2012

PARTNERING FOR CURES #P4C2012 IT'S HERE

Yes, I am drained.  These past 36 hours have drained me.  Tomorrow, I will be inspired.  Today is the day in between. Today, I'll do a little pampering and a little packing.  For tomorrow and for Friday....

Tell me.... who doesn't LOVE this message?

                          


Faster Cures is a an organization worth knowing.  There is so much information packed on the What We Do page, it's a "must click."  For those of us who are trying to be as active and involved as possible, it doesn't get much better than this:

"We start and end everything we do with the patient in mind.  For the medical research system to work, it has to be patient-focused, and patient driven."

That's all you're getting.... you will have to go see for yourself if you want to fully understand what they are doing at Faster Cures.  In 2009, they held their inaugural conference, an event that is "squarely focused on results."  Dr. Susan Love presented at that inaugural conference.  That in itself was enough of an endorsement for me.

Partnering for Cures is holding their 4th annual conference and it opens this evening.  It's in NYC and I am thrilled that I will be in attendance. This isn't only about breast cancer.  It's about all diseases.  It's about breakthrough.  It's about collaboration.  It's acknowledging that research does not happen in its own laboratory bubble.  It's understanding the importance of brainstorming, of sharing information, of finding ways to bring everyone together.  It's all about solutions. I'm all for that.

                        




Hopefully, I will be tweeting from the sessions which may or may not be a successful endeavor.  Listen AND tweet?  For a chemobrain, we're talking "How do you walk and chew gum simultaneously???" If you are on twitter, follow @FasterCures and @FC_P4C.  If you want to follow the event in real time, watch the #P4C2012 hashtag.  If I can't, plenty of others will! If this entire paragraph has you scratching your head, I'm sure the presentations will be recapped on the website.  In fact, you can go look at the presentations from the past three conferences.

And finally, this is another initiative by Faster Cures.  Yet another hashtag the twitterati may want to follow:  #TimeEqLives


Help share the message.... Time Equals Lives ..... We have wasted enough time.  It's TIME to push for solutions.  I'll be stopping at their booth to say hi.  And if they need us to form a cyber-flash mob, I'm counting on everyone to jump in.

Note to the NYC gang....  if you can find your way to the Grand Hyatt, drinks are on me.







Tuesday, November 27, 2012

HELP ME RALLY BEHIND SOMEONE IN NEED

I am worried.  I'm VERY worried.  When I began this blog, I decided to leave the comments section open.  In other words, there would be no "comment moderation" because, frankly, I didn't trust myself to review the comments in a timely fashion.  I also decided not to use those "prove you're human" letters.  Lastly, I allowed anonymous comments.

I wanted this blog, if anyone ever began to read it, to be as user friendly as possible.  I wanted interaction and I wanted anyone and everyone to feel this would be a safe place.  Very public, but still, SAFE.  When an anonymous comment is left, there is no way for me to track the commenter.

Most of the times there were anonymous comments, they were attacks directed at me because someone held a differing point of view.

Yesterday that changed and I am upset.  This comment was left on yesterday's blog:

"If I had known then what I know now about chemo brain and my loss of career coupled with the severe pain of 24/7/365 for over 2 years of periferal neuropathy I would have not had ANY treatment. I would have racked up a huge credit card bill and traveled all over the world. Now, I'm a burden to my family, cannot drive, have all sorts of pain and get lost all the time when I try. I cannot perform my career so I cannot earn money so we are worse than broke. We cannot survive on one income. We needed mine. I'm looking for a way to end it all. I'm thinking pills will be the best way."

I don't know who wrote this.  I don't know how to get in touch with this person.  In fact, I have no way of knowing where she (if indeed it's a woman) lives.  She may be in the US or she could be elsewhere in the world.  She could be in an area where there isn't the same array of care that is available in and around the larger cities.  I just don't know anything and I feel helpless.

All I have is this computer screen and my words.  And yours, too.  I hope that whomever wrote this is continuing to read the blog and will see this and will reach out to me... to her doctors...... to a support hotline......  or anywhere else you may suggest.

A personal note to anonymous:

My dearest friend,

Yes, you are a friend.  My friend.  I have bared my soul in many places on this blog.  What I have held back, I have done for the privacy of others.  And now, you have bared your soul to me..... and to those who read this blog.  We are connected.  We are friends.

I want to help.  I don't know how I can help but I hope you will get in touch with me so we can figure it out.  Together.  I can't possibly know how you are feeling but I can offer my shoulder.  I can provide emotional support to help steady your step.

I hear you when you say you feel you are a burden to your family.  I would imagine your family might feel differently and that they would be devastated if you chose to take drastic measures thinking you would be easing their burden.

Please, please consider contacting me.  I will protect your privacy and I respect your need to remain anonymous but please know you are NOT alone.  I am here.  I am listening.  I want to find ways to help you both emotionally and practically.

My heart aches for you.  Those who read this blog would all say the same.  WE will support you.  We will hold you up. Please stay in touch.  Please let me, let US help you in whatever ways we can.

I send love,

AnneMarie  (email anncicc@gmail.com)


I did not see this comment until many hours after it was left on yesterday's blog.  I began checking my email frequently, hoping to find a message.  Instead, I found ANOTHER email and I'm asking each and every one of you to please hold someone who has come to mean the world to me very close in your thoughts.  This is part two of what turned into a very upsetting day for me.  I do not want this to overshadow the need I feel for all of us to rally behind my anonymous commenter.  By the same token, my emotions are raw and I am stunned by the cruelest turn of completely unrelated events.

Many months ago, a social media pal reached out to me.  A co-worker was just diagnosed with breast cancer and I was asked if I would talk to her.  I have spoken to many people over the past several months, but this relationship was very different.  We have spoken many, many times since her diagnosis.  What began as a conversation about "lumpectomy vs. mastectomy" soon turned into a very different situation.

After a number of consultations, it was determined that chemotherapy should be done before surgery.  Then, taxol and there were issues with that......  At one point, there was a hospitalization because of heart issues.  Just before the storm hit, we were discussing the surgical options and there was an issue with types of surgery and then, a problem with cardiac clearance.  We were scheduled to speak yesterday.

When I say that NOT ONE SINGLE thing has gone smoothly for this person, it's a massive understatement.  She was the person who needed a third opinion EVERY TIME something was presented.  The second opinion was so different from the first, a third doctor was called upon each time.  We would then discuss all of the opinions so she could navigate the maze and decide upon the best possible treatment for her circumstances.

Her surgery was scheduled for November 29th.  Yesterday, I was hopeful she would obtain the cardiac clearance which was the only obstacle to the surgery.  Our last conversation was via email because of my ongoing phone issues and then, the holiday thrown into the mix.  I was anxious when I didn't hear from her, wondering if yet another medical issue was throwing a monkey wrench into what has become a rather complicated treatment plan.

I emailed her in the wee hours of the morning on Friday suggesting we might talk on Saturday.  My son stayed here for a few nights but I was sure I'd be able to manage some alone time.  She replied to me saying that I should try to relax and enjoy my time with my family which is "number one priority."  She then added that her two sons were with her and it was great to share time with them.  We would talk on Monday.

Her younger son turned 25 years old on Wednesday.  The day before Thanksgiving.  He died in a car accident some time on Friday in the hours after she told me how great is was to be spending time with both of her sons.

One of her friends sent an email on her behalf to a number of people.  I was included in that email.  It simply included information about a service that is being held this evening.  I believe the funeral is tomorrow.  Beyond that, I'm speechless.  And, my heart hurts.

Although she doesn't read this blog, I still want to say to my friend:

"My heart is shattered.  I don't know what I can possibly do to help you, especially since we are 1200 miles apart.  Still, I'm here.  I'm always here.  And, I love you."





Monday, November 26, 2012

LIAR LIAR PANTS ON FIRE

I'm a bit irritated and I don't know if I want to head to Tampa to converse with a few researchers or if I should head to the offices of the Wiley Online Library to bitch slap the person who wrote the headline for the story.

Chemobrain.  It's where this all began.  It's how I came to this place in my life.  Because I KNOW that chemobrain is real and it can be severely limiting and it can have a long term detrimental impact on those who live with this, I'm pissed off. I've been validated by many of your comments.  I've been validated by many more of the personal email messages sent to me because some were fearful of sharing their issues in a public space.  EVEN anonymously.

For years, chemobrain been little more than a punchline in a joke.  We have clawed our way out of obscurity and into REAL science.  Researchers are studying.  They see physiological damage.  Drugs previously thought to stay out of our brains are now believed to be crossing the blood brain barrier.  The first long term results of the cognitive issues experienced by those whose cocktail of choice was CMF were recently published.  They observed problems TWENTY years post treatment. Others observed shrinking gray matter.  And that matter, matters.

They saw deterioration of the the myelin sheath due to the destruction of the cells needed to regenerate that sheath. That "sheath" is necessary to keep things moving smoothly in our brains.  I wrote a long post about this wherein I likened the myelin damage to a ski mountain.  It's mostly silly but if you scroll down to the part in italics, you will get a sense of what is happening. It's a physiological explanation as to why our brains sometimes feel like they have stalled or are in need of a reboot.....

Did you ever wonder about the color scheme for this blog?  Why red?  When I see a headline like this, I see RED:

in case it's not clickable, cut and paste:  http://onlinelibrary.wiley.com/doi/10.3322/caac.21164/abstract

I didn't get that memo.  Did you?  Yeah.  Didn't think so.  Really??  REALLY????  WTF?  We are just getting to the point of some sort of quasi-acceptance in the medical community and we have begun scratching the surface with the crowd who infamously says: "I didn't have cancer, what's my excuse" and THIS appears in a medical journal.  I'm calling bullshit.

This is a prime example of why it is so essential to dig beyond the headlines and the soundbites.  Most of us rarely get past that headline.....at which point, the parroting begins.  The better headline was in Oncology Times:

"Chemobrain:  Persistent Deficits Documented Post-Chemotherapy"


This should serve as a lesson to each and every one of us.  This is the exact same study and in many places, the exact same article.  In each case it IS essential to understand that this was an analysis using data from existing studies.  But still, doesn't the first title sound a bit dismissive? Yes.It.Does.

The second title is not only more accurate, but it doesn't allow the nay-sayers to quote the title and start minimizing our struggles while their breath is still hanging in the air.  That second title says, "You got issues, maybe you want to read further" and I did.  Some issues are not accounted for and there is an editorial which was written to "clarify" some of the observations.  The editorial is a nice way of saying, "There's far more to this than meets the eye."  

Here are a few of my replies.  Written by others.  Researched by the best and the brightest.  There are some names you should know.  Those would be the researchers who have been at this the longest, who have dedicated their careers to investigating the causation and thus, hoping to find ways to repair the damage.

Post Chemotherapy Cognition Issues......  I'm going medical with the official sounding name.  Just for today I'm afflicted with PCCI.  Bearing in mind I DO suffer from "PCCI" and it is FAR from "mild" I'm throwing out the information that jumps into my head ....  Anything that mentions ANY of the following people is fair game for "quotable with minimal fact checking."  And, anyone Idelle Davidson chooses to add to this list because she is my go-to expert falls in that same category with the fact checking.  In no particular order, not ladies first, not alphabetical, just the way they fell from my brain:

Christina Meyers
Tim Ahles
Mark Noble
Patricia Ganz
Dan Silverman

That's a terribly short list and I know it needs to be expanded upon but if I distract myself hunting down names, I'll never finish this post.  Ditto, if I try to find the best links with the latest information.  Feel free to add.

Start at Idelle's:  http://yourbrainafterchemo.blogspot.com/p/how-to-use-this-blog.html

From the Cancer Connect website:  http://news.cancerconnect.com/chemo-brain/

From The Mesothelioma Center:     http://www.asbestos.com/news/2012/10/09/mesothelioma-chemo-brain/

You can even try some of the info links on this blog:  http://chemo-brain.blogspot.com/p/information-links.html
(One caveat: I've not been very diligent in keeping that page updated....)

If you remember nothing else, remember what is important:  Sound bites and story titles can be twisted to suit the agenda of the person telling the story.  Read the story.  If you don't understand the information, hell, bring it here.... I may understand it less but I promise, I'll try to find out what it means....  Just don't be a title reading page turning parrot and for that matter, don't you EVER let anyone else try to do that to you, either.....

Hell, you can bring THEM here, too. Being bullied into "It's a load of BS land?"  I'll gather a posse and get right on that, too.






Wednesday, November 21, 2012

HOLIDAY HIATUS

Tomorrow is Thanksgiving (in the US).  I'm delighted and grateful to qualify that statement.  Why?  I don't really pay much attention to the numbers but seeing the countries where this blog is read, quite honestly amazes me and more than that, it fascinates me.

Last year, I marveled at thirty countries.  I was on a continent quest.  It was all about Africa.  How serendipitous that I found a kindred spirit in South Africa when I was in Washington last May and how wonderful, through the magic of social media, we are constantly communicating, collaborating and swapping wisecracks between our respective continents.

I had already achieved my dream of that sixth continent when we forged our friendship.  Still, I never would have believed that this silly little blog would be seen in close to one hundred countries.  I'm humbled.

Thank you for reading.  Thank you for commenting.  Thank you for reaching out via email.  Last year, I did the gratitude list.  This year, it would be impossible.  This blog has been a game changer for me.  It has taken me places I could not even fathom.  It has brought me friendships that are so deeply meaningful.  Quite often, I step back and think, "How?"  And I think, "Why?"  And then, I stop questioning and just acknowledge the gratitude in my heart.

There have been plenty of #IRL (in real life) meetings and there are plenty more still to come.  They are right around the corner.  There have been connections made at conferences and online introductions that have led me to places well beyond my own comfort zone.  I've stepped into unknown situations, with confidence and sometimes with tremendous trepidation but I've stepped anyway.  In spite of myself.

I have found myself in the role of both the supporter and and supported.  I have encouraged and I have been encouraged. I've laughed.  I've cried.  The tears have been filled with sorrow and there have been tears of joy.  The laughter has been with friends and it has snuck up on me in moments of solitude.  I've been outraged and I've been hopeful.

I've been overjoyed by good news and I've been upset by set backs.  I've been overwhelmed when hearing bad news. There has been no shortage of not so great situations popping up all over the place.  The sadness is palpable.  Bearing witness to suffering and death, I've gotten angry.  It's an ugly anger.  But it's an anger that pushes me onward.

Mostly, I just am.  Here.  Profoundly thankful for the path before me.  Appreciative of every opportunity I have to help change this conversation.  I don't know into whose life I have stepped, but I'm keeping it.  I'm determined.  I may not be the change, I may not see the change, but I will not stop pursuing that change.

Quite simply, I will:

Live sincerely.

Love deeply.

Laugh heartily.

And most of all, if it's worth doing, I will DO it with passion.

See you on Monday.  With a renewed sense of purpose and soaring spirits.......

And a sneak preview into what comes next..... My lips are sealed....

Need something to do for the next few days?  Help my friends at WEGO Health and get those nominations going..... I want to keep my Ambassador status so get cracking.....



Tuesday, November 20, 2012

GRATITUDE PREQUEL .....

If Sandy made me sit down and take notice that I might have been burning the candle at both ends, the past couple of days have wiped me out.  Stupid storm threw me off my game.  Ruined my rhythm.

There was a time I could roll with the punches, maybe not the emotional punches, but the practical stuff.  If circumstances set me back, I had the ability to tune in with laser focus and get everything back on track.  Straighten up a messy room or get paperwork in order.  It never took long to recover and have everything running smoothly in no time at all, and with what amounted to just a little extra effort.

Now?  Not so much.

Just recovering from Frankenstorm, I could not begin to address everything until my internet was fully restored.  I had to access records in order to put together reports to complete insurance audit paperwork.  Ditto, payroll tax returns.  Last Thursday, everything was up and running.  And last Thursday, I received a text from my very closest friend in the whole world.

"My dad died."

It was not unexpected.  He was 87 years old and he lived a full life.  My friend is many things to many people but most of all, she is a devoted daughter.  As her dad's health began to deteriorate, she rearranged her home so her mom and dad could move in with her and her family.  She was his primary caretaker and I knew she would be distraught when he died.

I spent most of Thursday with her.  Yesterday, he was laid to rest.  He was a veteran of World War II.  He saw combat. He was awarded the Purple Heart after being shot by Nazi soldiers.  I could fill pages sharing stories about his life and about some of the times I enjoyed with her dad.  He was warm and kind, witty and wise and he was a loving husband and an extraordinary dad.  We have oftentimes talked about how lucky we were...... our dads were, in a word, PERFECT.  

On Sunday, I sat quietly behind her in the funeral parlor.  Yesterday, I stood off to the side as she rose to say a few words about her dad at the conclusion of mass.  The plan? If she couldn't get through her eulogy, I would step in and finish reading it for her.  I never doubted her for one second.  She spoke beautifully, and at times tearfully, but she spoke her words, from beginning to end.

We exited the church, got into our cars and thus began the procession to the cemetery.  Despite being a veteran, her dad was buried in a Catholic cemetery and it happens to be the same cemetery where my own dad is buried.  This is not a small cemetery.  It occupies many acres of land and many thousands of people are buried at this cemetery.

As I was sitting in my car waiting to exit, I quickly realized I was beside the area known as the Holy Innocents.  It's an area where children are buried.  I was alone in my car and I put my head down and began to cry.  When I see the pinwheels and the toys, it upsets me in ways I can't begin to explain.  I grabbed my sunglasses even though it wasn't terribly sunny, indeed it was quite overcast, but I wanted to be sure to hide my tears when I got out of the car.

I knew we were going to section 41.  My dad is buried in section 47.  I planned to visit his grave after the burial ceremony. I would find my way through the winding roads before heading back to my friend's home.  Find my way?  As I was walking toward the gravesite for the ceremony, I looked toward the other side of the street to see a sign that read "Section 47." The sunglasses hid the tears that were spilling from my eyes.

Still I didn't realize where I was standing.  I only knew her dad was on one side of the road and mine was on the other. I'm not quite sure why she was waiting for me at the curb but as I approached her, I simply said, "My dad is buried right across the street."  We walked toward her dad's grave arm in arm, both with tear stained faces.

I was among the first to place the long stemmed red rose on her dad's coffin.  I turned to get into my car expecting to drive what would amount to a couple of blocks to the row where I expected to find my dad.  Except, there would be no driving, there would be no rows..... my car was parked adjacent to the row where my dad is buried.  And my grandparents.

I don't know what the odds are..... but I know that it's less than a short city block from her dad's grave to mine.  And I didn't expect that.  It would take less than a minute to walk from one site to the other.  And the emotions bubbled up until they overflowed and I am drained.  I was blindsided.

And now, I am exhausted.  Trying to find some sort of meaning where there is none.  It's just an odd coincidence.  But it caught me off guard and it's knocked me for a loop.

My brain has shut down on me.  There are other things on my mind and there are plenty of other things on her mind, too. None of it is appropriate to share without invading the privacy of others.  Someone recently used the phrase "hierarchy of care" which pretty much explains both of our lives.  Despite both having had cancer diagnoses within months of each other, it seems neither of us ever manages to put ourselves on the top rung on that hierarchy.

I think it's okay to have others at the top of YOUR list as long as YOU are at the top of SOMEONE'S list.  My friend has placed so many others above herself in her hierarchy of care and today, I want to be sure she knows she is at the top of my list.  And she can have that spot for as long as necessary.  She has dropped everything and run for me on more than one occasion.  And if I called her tomorrow, she'd drop everything again.

I'm getting my thoughts together and hope I will be able to express the gratitude I feel for so many things as Thanksgiving is upon us.  This is my prequel.  With a grateful heart for the gift of your friendship and with all my love...... This is for you, L.




Monday, November 19, 2012

YOU CAN THRIVE -- CAN YOU HELP?

I met Luana several months ago.  She doesn't remember that particular meeting because she was a rock star that day. She took to the podium in a conference room and mesmerized all of us with her passion.  I met Luana again just a few weeks ago at the registration for the Avon walk.  She is a supporter of DSLRF so she stopped by the Army of Women sign up table to say hi.

Luana founded and runs a non-profit.  You Can Thrive.  I'm all about research but I'm also about making sure the needs of the underserved are met and I'm definitely about AFTER.  What happens after that rope is cut and we are no longer tethered to our medical facilities?  You Can Thrive fills a tremendous void.

A holistic approach to care is now becoming mainstream.  Complimentary care like acupuncture, massage, reflexology, aromatherapy and meditation are quickly being incorporated into standards of care.  You Can Thrive has been doing this for several years.  Advocating for patients in active treatment and helping develop post treatment programs is at the core of Luana's vision which she turned into a reality.

All of this is done at no cost.  The therapists volunteer their services.  Space is rented but the space they occupy on Sunday will no longer be available as the calendar closes on 2012.  You Can Thrive is on its very own Fiscal Cliff.

As we approach this season of giving, perhaps you might consider a donation to You Can Thrive.  They are scrambling to find an independent space to rent.  Are you in NYC?  Do you know of anyone in NYC who might be in a position to assist in finding space, donating space?  Are you in a position to tell those who ask you what you might like as a holiday gift to say, "Send a donation......"  ??

I'm counting on those of you in and around the NY area or with connections to anyone in the NY area to reach out...... Maybe we can make something happen for You Can Thrive.....  Together.....  Each December, I stumble upon a feel good holiday story.  I hope You Can Thrive will be my "feel good" story this December.

Please take a look around the website to see how the vision of one person and the passion of that person can change lives. If anyone has any thoughts or ideas, please contact me.  anncicc@gmail.com  and if that didn't print like an email address, it's in the contact link.

Let's brainstorm.  I really like Luana lots.  Her passion is infectious.  She did a little pet therapy and some aromatherapy with a few of us at the sign up table.  One of the people who was there went to the center that Sunday.  On Monday, I received an email.  Quite simply, it said, "You Can Thrive is the BEST."

Maybe we can help to make it The BestEST?

~AnneMarie



Friday, November 16, 2012

NO #SEQUESTRATION - YES #SAVERESEARCH

I never dabble in religion or politics on this blog and I don't plan on backing away from that position.  There is, however, a crisis in our government.  It's something that each and every one of us who is passionate about medical research should know and understand.

The big sound bite since the day after the election is the so called "fiscal cliff."  Frankly, the focus on this fiscal cliff thing is pissing me off.  First of all, it has a name.  It's called sequestration and it's something that is going to impact research in this country unless something happens before congress closes up shop.  It's going to effect a bunch of other things too, but as an advocate/activist, I'll stick with the line items that are consistent with this blog.

It's not a question of something that could happen or might happen.... it's something that is happening.. that WILL happen unless the folks in DC act quickly.  I don't pay enough attention to details these days but I saw this several weeks ago and frankly, I was very upset that this was not being discussed by the talking heads in the run up to the election.

In a past life, I could grasp much of this despite my inability to fully understand all of the underlying economics.  Now? Use a word like "debt ceiling" and I'm glancing at the sheetrock above my head for some extra fancy woodwork and cutouts.... in other words, a ceiling that cost so much to construct, someone went into big debt in order to achieve aesthetic perfection.  Eye candy for those times one is on their back staring into space.  And I would be wrong.

I doubt I can explain this in a way that anyone will understand.  I seem to recall attempting a blogpost about this before Sandy stole far too much time from my life.  Margaret Anderson, the executive director of a group called Faster Cures wrote a blogpost about this mess.  The link is here and I strongly suggest you click and read.

They have set up a special Sequestration Station on their website.  If this all reads like Aramaic, I suggest you read the FAQ's which explain what this is, how is happened and what must be done to avert this cliff diving nonsense.  If you don't read ANYTHING ELSE this entire weekend, please read those FAQ's.  We must compel our representatives to avert what is going to be a devastating blow to research.

There are several campaigns taking place at the moment.  As I was writing this piece, I see that today, Friday, there is a major push in social media to bring this to light.  Participate.   Check the Save Research campaign  and sign the petition so OUR government knows we need CURES NOT CUTS.

Like the pages on Facebook.  There are a few:

Faster Cures

Time Equals Lives

Research America

Tweet away using #SaveResearch or #CuresNotCuts or #TimeEqLives.

Today, I'll be tweeting to all of the politicos using the #SaveResearch hashtag.

I hope to be part of a huge twit storm.

This shit matters folks.  It really REALLY matters.....








Thursday, November 15, 2012

FRANKENSTORM -- IN PHOTOGRAPHS

Ya just gotta love those witty weather folks.  So clever with their hype.  And for what it's worth, there was no Halloween this year.  Frankenstorm was it.

I was sitting in a hotel room in Austin when I caught a glimpse of the news crawl.  Because I wasn't in NY, it was little more than a blurb in the midst of the moving words.  Bottom line.  I got home from Austin on Saturday afternoon.

Spent all day Sunday attempting to get "you will lose your electricity" supplies.  No batteries, no water, no peanut butter, no bread......  Did the best I could.  Monday started out just fine.  The wind started to kick up early in the day.  It was no big deal.  Except it was.  Somewhere.  The internet went out first and the electricity shortly thereafter.  That was about 2PM on October 29th.  The power didn't return until November 9th some time after 7PM.  It was twelve, count em... yes TWELVE days.  

We were out-driving-in the height of the storm, trying to get home, detoured by blocked roads and downed wires but that's a story not worth telling.  It will only serve to piss me off so I'll leave that alone for now.....  I'll just proceed to the photo portion of the story.....When we were finally able to safely leave, this is a bit of what we saw in the area right around my home.

I want to note that we were in a very hard hit area only because it is very wooded.  Tree removal crews had to work with power crews.  The real devastation is south of me.  Homes were flooded.  We were merely inconvenienced.  Others lost everything.  Including lives.  This was just a mess..... destruction.  But there is a big difference between destruction and devastation.  My heart breaks for many .......



Trees blocking roads

Wires draped across roads


Poles snapped like toothpicks
Trees across front lawns


Wires holding trees from falling to the ground




Uprooted trees that are 10 feet or more in diameter





My next door neighbors couldn't get into their home.  The tree was already cut in half and removed from their cars
And around the corner
And this was the extent of the damage I sustained.  It's
a pretty big table.  The wind lifted the glass from underneath
and it slammed into the house.  You can see the glass which
extends off the left side of the photo.




And more huge trees



I'm not kidding when I say HUGE.. these suckers lifted cement and all.

And leaned on still MORE wires.





This twisted mess was around the corner...



And I suspect this had plenty to do with why we had no power for 12 days










I needed this for firewood. It was a tame scene in comparison to the rest and there are NO wires!
I went to sleep......

And the following morning......

....it was time to leave......
I used my time wisely and spend three hours in the very warm DMV renewing my license.
I charged my phone, had internet access and you know it's bad when you prefer being
at the DMV to any other place in the area.....


Then, there was an election..... and no power to light or heat the school.  


And everyone, everywhere that DID have electric was
very generous with their power.  Very neighborly!
But, Mother Nature wasn't quite finished with NY.
It started out just looking very pretty.....

Until eight inches of snow was on the ground.  Roads were closed.
Too much snow, no plows, icy roadways.....
I do believe that's what they mean when they say
"Let's add insult to injury"

What Frankenstorm didn't destroy, the nor'easter did.  My crepe myrtle is a goner...

And George won't be picking any apples off my little tree.....

And I have been nurturing these evergreens... Each season we lose at least three.... I finally had a whole row
All healthy..... There are 8 of them.  Four are half uprooted and turned sideways.  The gardener did his best
to try to shore them up... We'll see what happens in the spring.  The damn snow pushed them over the edge....

This is what the roads still looked like last Sunday.  Two full weeks after the storm.....

A mangled, twisted mess....

Of wires dangerously close to the roadway and no sign of anyone to fix them...

Just those little cones....

And scary looking wires....
And a sign that made me laugh..... because it told the whole story.  A simple twisted sign.....




Oh... and I had a birthday right just hours after the power went back on.....  And the cocktails were well earned!