Friday, August 31, 2012

CELEBRATION OF THE "EXTRA" ORDINARY

Have you been following along with me this week as I "celebrate the ordinary" at the invitation of Marie Ennis OConnor?  This is my final piece in my celebration.  I'm stopping at six.  I snuck the moon in last night.  How could I ignore THAT?

I have decided to submit this post for Blog Action Day 2012.  The theme is The Power of We.... THIS is all about how WE can make a global difference.  WE are powerful... Together....



This celebration is far from ordinary.  It is a beautiful story of a bond between two women.  One in New Zealand and one in Canada.  Already connected because of their shared diagnosis of metastatic inflammatory breast cancer.  Soon to be physically connected by way of the UK through NY.  Because of something started in Michigan.

The traveling pants.  The Stage 4 Traveling Pants.  My concluding piece in this celebration is in honor of the Stage IV patients.  Our sisters.  Those for whom I am a #FearlessFriend.  Those words have been repeated many times by me and by several others.




The story begins several weeks ago.  Someone is having a moment.  You know what I mean.  One of those moments where those of us who can, should.  A simple message was sent out into the energy that is twitter.

If you are along for my wild ride, you may remember this evening.  I wrote a blog post hoping that Suzanne in Canada would realize there are real people who heard her and who are listening.  There are times in this cancer gig that can be very lonely.  Suzanne's words were raw.  I just wanted her to know she wasn't alone.  Even though she couldn't really feel or see us, she wasn't alone.

After writing the post, I began catching up on my reading.  I was "back blogged" and had lots of catching up to do.  There are a number of blogs I follow and I had tabs on Jenny in New Zealand.  She made a decision to stop treatment.  Choosing quality over quantity, she was going to live on her terms.  My heart broke when I read her words.

I connected with Jenny on twitter almost a year ago.  Knowing she was on borrowed time, I made sure to check in on her frequently.  Except, I missed a blogpost.  The post about the pants.  She had these pants in New Zealand.  She went visiting with them.  She chronicled her travels with the pants.  I knew I had to arrange for those pants to get to Canada.  It would be a nice way for Suzanne to know there ARE real people behind the computer screen.  I sent a tweet to Jenny.

Hours later, we were chatting online about the pants.  I told her what I wanted to do.  I may have sent her the link to Suzanne's original note which is what started this wave of connectedness.  Within moments, Jenny announces, "I know Suzanne from a closed Facebook group."  She went on to explain how she felt when she heard that Suzanne learned her cancer was metastatic.

broke my heart when she was diagnosed stage 4 as well because even if you come to terms with own diagnosis you want others to beat the odds
Direct message sent by Jenny Williams (@jaydub26) to you (@chemobrainfog) on Jul 11, 12:40 AM.



That is Jenny.  Selfless and beautiful and kind.  We were talking back and forth and we were coordinating with Shannon. The Pants were Shannon's idea.  She started these pants on a journey in honor of her younger sister who is a stage IV patient.  You can read about Shannon and Stephanie and the pants on the blog or on the Facebook page.  When we realized that Jenny and Suzanne KNEW each other, it seemed like it would be so special if Suzanne got the pants directly from Jenny.

Before we could get all the coordinating under control, Jenny already shipped the pants to the UK.  Originally a bit disappointed, I was soon oddly comforted by the zig zag travel from NZ to the UK to NY to Quebec.  Had they gone straight to Canada, I would not have seen the pants.  Touched the pants.  You see, before the pants arrived in the UK, Jenny took a turn for the worse and the day after the pants were shipped from the UK, Jenny died.

It was not unexpected but it was far sooner than anyone expected.  Jenny's story is very special and it's worth reading her blog to see what happened from June 2nd when her older daughter got married through August 1 when that same daughter informed all of her cyber buddies that she died.



 



Have I lost you yet?  The pants arrived at my home on August 11th.  I waited until I was alone to open the package.  I had tears streaming down my face within seconds of opening the package.  I saw all of notes that Jenny left on the pants, in her book and in a card.  I cried as my fingers caressed the ink marks and everything that Jenny had touched.

I would not write on the pants.  Instead, I attached a small notebook with a safety pin.  I put my treasured METAvivor pin on the pants, wrote a note to Suzanne and sent them on their way.  I was CERTAIN Suzanne knew about the pants.  I was SURE this was not going to be a surprise but I didn't care.  Given what had happened to Jenny, I was grateful that I had the chance to see the pants.  To physically touch something of Jenny.

Suzanne did get the pants and in another wonderful twist of serendipity.......  well......  she was commenting on THIS blog as her husband was opening a package...  Have a look:


  1. Thank you AnneMarie, for sharing those beautifull words and thoughts.

    Can I "steel" them to do the french translation?

    ...
    OMG
    ... my husband just opened a box we thought it was my daughter school uniform... I will send you an e-mail soon!

    Suzanne
    ReplyDelete

    Replies





    1. OMG!!! I can't believe you were commenting here when you opened up the box. The story just keeps getting more and more AND MORE special!

      GIANT hugs, Suzanne. Never forget you have many people supporting you. We all care.

      xoxoxoxo

      (FYI-Now I'm crying ...... wow...... WOW)
      Delete
  2. Amazing!!!!!!

    AnneMarie and Suzanne, I hope you will be blogging about the incredible unfolding of these events. I've been privy to the inside scoop, but I know others would love to hear about it. En fran├žais aussi Suzanne.
    xoxo
    ReplyDelete

I was THERE for her reaction!  What are the odds?  How wonderful that I was able to be there!  And, if I haven't completely confused you altogether, Colleen is the person who started this whole thing.  It was HER message on twitter that directed me to Suzanne.

As for the rest of the story, Suzanne will be sending the pants to METAvivor for an Author's Luncheon which is an annual fund raising event.  When I added my METAvivor pin to the pants, I was hoping CJ might send me another.  That's how I found out about this luncheon.  Since the inspiration for the pants is the book, "Sisterhood of the Traveling Pants," it seems a good place for the pants to be on display.  From there, they are scheduled to head to Belgium to Jeannie who has been patient and gracious with what Shannon has referred to as a "Traveling Pants Emergency Pit Stop" on the Facebook page.


While the pants were in my possession, another woman who signed the pants also died.  Marie Gabel took the pants on a tour of the Jersey Shore.  Those pants were in Wildwood with Marie.  I spent many summers when my kids were young vacationing on those very beaches.  More Sadness.

And I was touched when I saw this pin, knowing that Dr. Love is having her bone marrow transplant at City of Hope......



Nothing, however could prepare me for the decorations left by the girl in the UK who sent the pants to me.  Given how this Celebration of the Ordinary began on Sunday with my first photograph and the accompanying story, THIS was one more reminder that I am on the right path.  Affixed to the pants in the UK..... I was the first one to see the latest decorations added to the pants.  What Are The Odds?




And that, my dear friends, is what I call "Full Circle" ......  My Celebration from Ordinary to EXTRA-Ordinary.  What a beautiful tapestry has been woven.  What wonderful connections have been made.  What sweet and bittersweet serendipity. What a week!




Thursday, August 30, 2012

ORDINARY (AND UNCOMMON) CELEBRATION





It's the moon!  Big deal, right?   It's a beautiful full moon.

WAIT!  It's not your every month full moon.... this one is special.  This one IS a Big Deal.

It's a Blue Moon.  Every once in a blue moon.......  Well, "every once in a blue moon" is NOW.

So.... I'm going to encourage you to step out of your comfort zone.  Do something that you wouldn't ordinarily do.  Whether it's taking some time for yourself or doing something quietly to lighten the burden of another...... 

Once in a blue moon......

Me?  I think I'll jump around like a lunatic.  I can hear Pink Floyd in the background of my mind.  Really???  Pink Floyd.... Aye.  NOPE.  I'm not tainting the BLUE moon.....

I'm Moonstruck.


Wednesday, August 29, 2012

ORDINARY INNER CHILD CELEBRATION


My niece was here over the weekend.  She has quite a stash of toys.  As I was putting them away, I was struck by each of these items, coincidentally within inches of each other.

Like Humpty Dumpty, I feel like I took a great fall.

My body has been broken.  Humpty, despite the attempts of "all the kings horses and all the kings men" could not be put back together.

Me?

Despite the skill of some of the finest doctors in the world who did put me back together again using lots of surgical tape, glue and stitches, I have come to learn there is far more to being put back together than the work of my doctors.

The real work is squarely upon my shoulders.  Being whole is a choice I must make.  For me.  And only for me.

My Post Treatment World is an emotional minefield.  I have chosen to embrace those emotions and channel them.  I want to be part of a global change.

Being part of a change of such enormity is quite lofty.  And, it requires gumby-like flexibility in the way I think.  Keeping myself whole - body-mind and soul - requires gumby-like resilience.

Having my world changed by the word cancer and looking over my shoulder, which I know I will do on some level for the rest of my life, is like that box from which Humpty springs.  Knowing what could pop out is frightening.  

Each day, I turn that handle.  Each day I am conscious of the fact that the door DID open once.  Might it open again?  With which turn?  

Life in PostCancerLand is far from child's play.  



Tuesday, August 28, 2012

SYNCHRONIZED ORDINARY CELEBRATIONS

Today, my ordinary celebration is to recognize that my life has taken on a new meaning and Marie has played a role in cresting the wave upon which I am now perched.  The main photo... You BET:




Adding Marie's blog image was an inspiration that came after I began reading all of the Ordinary Celebrations that are spreading around the blogosphere like absolute wildfire.  Let's start at the beginning and I will make the "intro" quick.... Here WAS today's ordinary celebration.  

   

My yoga mat which became a part of my life as 2010 began to wind to a close.  It was a shitty-ish year.  Or not.  I suppose it's all about perspective.  Practicing yoga was the only form of exercise allowed by my surgeon after a somewhat extensive surgery and it was with the caveat: "NO engaging the abdominal muscles."  As a result, I began one on one yoga instruction.  The stretches were tailored to my specific needs.  And it has evolved.  Yoga is now a part of me.  It's what keeps my life in balance.  It's what makes me stop before I launch myself from zero to raging.  It's what energizes me to keep doing what I know I WANT to do.  Yoga helped me eliminate the static from my life.  The background noise is gone and in that space of silence, I can truly listen to the messages my brain is trying to transmit to my heart and soul.  Too zen?

Ok... then, let's move on..... the laptop and the iPad (which is a very handy device when I'm on the run) have become the best tools I own to assist me in listening to those messages.  Something so public, like blogging, is the result of something so private, like yoga and meditation.  That is the essence of yoga.  Balancing the opposites.  I'm sticking with zen.  It's gotten me pretty far on my own Journey Beyond Breast Cancer.

The laptop is a lifeline to a global community.  Yes.  Global.  There are people I consider to be integral in my life.  They are as far away as South Africa and New Zealand and they are in my own backyard.  And, everywhere in between, too.  I am part of a community that is proving we are stronger together than the sum of our parts.  (And yes, I WILL have to think about that, analyze the words, figure out if they even make sense because that's got a number theme and numbers are my own personal chemobrain hell..... in a former life... I was The It Girl when it came to numbers.... )

Yesterday, for example, the laptop enabled me to monitor events in Montreal where the Cancer Congress is being held.  As I was putting this blog together, I got to be part of a "Storify" put together by the American Cancer Society News tweeps. Another unexpected "add on" in this blogpost. Look:  

Proof positive.  We are connected.  And, we are in sync.  And this is how we can begin to effect real, meaningful change.  

This is what prompted the rewriting of this post.  Synchronicity.  Yesterday, I was catching up on everyone's Ordinary Celebrations and I began to see something that made me smile.  We are in tune with one another.  Forgive me if I didn't leave a comment or if I fail to include a mention here but chemobrain absolutely has its own set of unique challenges.  Feel FREE to include any links in the comments.  I need all the help I can get and YES, that is was this blog is all about.  An interactive exchange of thoughts, feelings and support.  Link away....

Here's what began to make me smile.  We seemed to be doing things in pairs, sometimes rippling into groups.  UNplanned. It started when I read Lori's blog.  She was celebrating bees.  Lori and I were roomies at the NBCC summit.  Many of you already know that.  Lori and I were often referred to as "The Newlyweds."  For the record, Lori and I each have husbands..... but... yes, we connected instantly and deeply.  Yesterday as Lori wrote about bees, take note of the last picture in my ordinary celebration.  Renn had flowers with a little critter smiling back at her.  Read the comments and you will see that Renn's post for the next day... and she had not seen my comment.... Well.... you tell me this isn't everyone sync'ing up.

As I began poking around, this theme of synchronicity was buzzing (yes, pun).  Beth and Jamie were talking kittens.  Then, I see Nancy and Brenda talking about food and I'm getting ready to run to a specialty store to get all sorts of goodies. When Katie and Jan were sharing their experiences of leaving for new homes, I think I got all teary.  Even Yvonne talked about houses, albeit houses of a different kind!  There was a tree theme going on and I will send you directly to Marie's blog to see how Nancy, Phillipa and Martine  were all about those trees!

Mostly, today's celebration is about MARIE.  She has been such an instrumental part of bringing so many of us together and today, I welcome Lisa.....  who has decided to "march" along with all of us.  With the weekly round up and now, with this photographing of the ordinary, she continues to bring us together.

The yoga and web2.0 do fit into this paradigm.  Without either of those things, this entire blog would be little more than a figment of someone's imagination... likely not even mine......

To get back to the original photo, MY original photo, there are two items that require a closer inspection.  This is the Where's Waldo section of today's post.

This little citrine colored glass sculpture sitting in the midst of the mat was a gift.  A yoga pose.  Very introspective.




AND That little slip of paper taped to the cover of my laptop?  The fortune cookie tells the whole story......

Monday, August 27, 2012

CELEBRATE THE ORDINARY - DAY TWO

As the summer winds to a close, I realize how wistful I become when the dog days of August give way to those first days in September.  Days begin to get shorter.  This beautiful scene, bursting with color and serenity will soon be dull and drab.

This day and for the next several weeks, I want to enjoy every moment I can drinking in the splendor of summer, my favorite season......... I love the warmth of the sun.  I love the splash of color and I love these flowers more than any other in my little slice of paradise.

Those bougainvillea (there is a sister plant on the other side of the pool) will have to be brought to a greenhouse to survive the New York winter.  And, I might add... those plants are the pride and joy of my gardening endeavors.

I purchased them in May.  One of them nearly dropped all of its leaves and the other stopped flowering completely.  I got a little advice from the elderly Italian man whom I hope will agree to "babysit" these plants for the winter.  A bit of topsoil, water (even though they like to be very dry) and a careful feeding.  "The leaves, they make-a da flowers"  and they sure do!  The fact that I was able to coax the leaves to "make-a da flowers" is a lesson.  Somewhere in there.  Definitely, a lesson.



I suspect these little fellas may be providing a bit of help.... and they really ain't so little!


Kudos to Marie (whose blog is JOURNEYING Beyond Breast Cancer - NOT Journey - for throwing down a challenge that's spreading like wildfire).  Check the blogroll..... Go to her Facebook page.....

I think some of us were beginning to burn out.  What a way to rejuvenate!





Sunday, August 26, 2012

CELEBRATING THE ORDINARY, I'M IN -----

First of all, I may be a day late with the posts but I write my blog posts in the evening.  For me, this is my "Sunday" entry even though it is Monday's blog.  With this whole global thing going on....  I'm pretty sure it's not a big deal.  Or it is. Typically AnneMarie.  A day late.... perhaps a dollar short, too?

Before I type another word, I want to welcome Marie back to the blogosphere.  Journey Beyond Breast Cancer has been on a bit of a hiatus.  Marie was in the hospital.  She's easing her way back.  She's tossed a challenge out and I'm loving it. Marie's vision is for us to photograph and document one thing each day that we may take for granted...... things we should be celebrating.  It is much better if you read it here directly from Marie.

My Day One photograph is of the butterflies that are living in a bush outside my kitchen window.


I have a "thing" for butterflies.  It started when my grandmother died.  It was March of 2006.  The wake lasted two days. The first night was my wedding anniversary.  My husband gave me a gift and the jeweler wrapped the box using beautiful ribbon.  There was a gold and purple butterfly adorning the box.  I removed the ribbon with great care and I placed the butterfly into a small bag that I was bringing to the funeral parlor.

When we arrived, I recall handing the bag to my mom.  It contained framed photographs.  And the butterfly.  I left the bag and walked to the front of the room to see my nana.  The priest said it best at the beginning of her funeral mass.  "Ninety-four years is still not enough."  I remember my breath catching in the back of my throat as I approached her.  I was not prepared for her to leave us.  I don't know how long I stood there before my mom was beside me with the butterfly in her hand and a bit of a confused expression on her face.

I gently placed the butterfly next to my grandmother.  One month later, in April, my routine mammography was not "routine" and my feet were straddling the line.  You know.  THAT line.  In April, I had no hint of what was to come.  It would be three months before I heard the word "cancer."

And there were butterflies all around me.  Yellow swallowtails.... mostly......  and they were strangely comforting.  It reminded me of my nana.  She was strong and "colorful" with her language.  She thumbed her nose at that which she deemed unimportant.  She marched to her own drum.  She was true first to HERSELF.

Each time I saw a butterfly, my thoughts went immediately to my nana.  The butterflies gave me strength.  I was not alone.  I had the lessons I had learned from watching her over the years.  Staring down adversity, rising above any challenge that was thrown her way.  I was carried through the worst moments during such difficult days by the butterflies all around me.  Everyone in my life knows that butterflies carry with them a very special significance.

The other day, my daughter was sitting at the kitchen table.  She called to me to ask me what type of shrub was outside the window.  I didn't know.  She told me she never saw three butterflies on one bush.  I was at the window in a flash.  And then, I was outside.  There were at least six or seven butterflies on the shrub.  And there were a bunch of very small butterflies, too.  I stood there in awe.

The butterflies have been fluttering around that bush every day for the past week.  These two decided to just hang together on the flower that was closest to me.  There's been lots of "STUFF" going on in recent weeks.  I know I can and will rise above and deal with whatever is tossed my way.  I carry the resilience of my nana in my heart.  And I carry all of the memories of my dad, her son and hope I can live my life on the same path that he lived.  Always on the high road.  And those butterflies remind me,

"You Got This..... Yeah.... You Definitely Got This...."

Friday, August 24, 2012

LANGUAGE ALERT. TWO PARAGRAPHS IN ...

Mom.  I'm sorry.  I know you don't like it when I curse in the blog but today is going to be a cursing kind of day.  This is a fair warning to anyone who is offended by graphic language or the really bad curse words.  I may use them all.  And, I could probably get even more offensive but I'll let those of you who might be inclined (on occasion) to use those really disgusting words to insert them for yourself.

Certain language lines I won't cross in my writing but there is a woman out there who earns that C word.  If we were all sitting in my kitchen, I'd say it freely.  And frequently.  And I'm sure there would even be some adjectives that might even be MORE offensive than "that word."  Yes.  For Sure.

This is to the person who is parading around somewhere with a driver's license bearing MY name, MY address, MY date of birth and HER photograph.  You are that word.  The C word.  Here's what I hope will be the quick version.  Two days ago, there was a message on my phone from a department store.  I am so immune to the fraud warning phone calls, I MIGHT have ignored the message.  Except, I don't use department store charge cards.  I have some.  But I try to keep things on one or two credit cards.

I have chemobrain.  I can't deal with all these different bills coming at me from a dozen directions.  My finances and my bill paying abilities have taken a hit from the chemo cocktail.  My brain evaluation identified issues primarily around numbers.  The focus, the ADD, the "getting started" ..... those are all bonus round add ons that have piled into my brain over time.

This lovely woman gets on the phone with me, looks up my account and asks me if I was in the store on August 10.  Two things cross my mind immediately.  WHY are you calling me twelve days later AND, you must be kidding me if you think I can recall if I happened to be in a certain store on a specific day two weeks prior.  I don't know where I was an hour ago. Is this woman nuts?  When I actually grabbed my trusty iPhone to check the calendar, it begged the question:  "Who is more nuts.... the woman asking the question or YOU, looking at a phone calendar?

No, I tell the woman.  I'm fairly sure I wasn't in the store on that day.

"The sales associate made several attempts to get the purchase to go through, but the ID number on the driver's license didn't match the number we have on file."

Now, I'm getting a bit concerned.  "You mean to tell me someone was in the store with a license bearing my information and someone else's photograph??"

"Yes.  Let me look at what happened.  When the ID number on the license didn't match, we asked her a few security questions and she didn't answer them correctly.  The sales associate made another attempt to complete the transaction and it went to the next level of security questions."

I'm pretty sure I was catching flies with my open mouth by this point and I was definitely not fully comprehending what I was hearing.  First, WHY was the sales associate attempting the purchase again and second, the next level of security questions?  I've been ID'd using that next level of questions.  If you haven't, let me just say they are frightening.  Things like "which one of the following is a street where you NEVER lived?"  And, three of the streets are from my past.  And I'm talking like 30 years ago, PAST.  It's Big Brother, George Orwell scary.

And it gets better.  "Oh, there are some additional notes here.  Did you request an increase in your credit limit on this account?"  Now I'm CERTAIN I was no where near this store.  I have been known to drop entire "episodes" from my life but there was too much detail being provided by this positively wonderful woman who was trying to help me sort this out. And, she didn't even know about the chemobrain....  "No.  I've never ever ever requested a credit increase on any credit card. In.My.Life."  The bank would occasionally notify me...... "Congratulations, we have raised the limit on your card," but those increases were never as a result of something I initiated.

Moving right along, "Wait.  I see a jewelry account was opened in the store."  Now I'm beginning to get really (sorry mom) FUCKING pissed off.  "Jewelry???"  Again, who knew you could open a separate "jewelry account" on a department store charge.  Had she said handbags.... well, I have this thing for fine Italian leather bags because my own initials are enough (that is the tagline of my very favorite line of bags)...... or shoes because I'm still jonesin for those Loubies..... it would make perfect sense.  But jewelry?  I don't buy myself jewelry.  My jewelry?  All gifts.  Even if they are "I'm sorry" gifts. And, for what it's worth, my current favorite piece was an "I owe you" gift.  For now, we'll just leave that right there.  It's a story for another day.  Maybe.

This bitch, the one parading around with my information on a phony driver's license wreaked total havoc on my evening. First, 45 minutes on the phone with the department store.  It was a whole process to CLOSE the account because even though I could answer all the first line security questions, the account was compromised.  Specific procedure had to be followed and she needed to generate those Orwellian questions.  Except they wouldn't generate.  Why?  They take 24 hours to regenerate.  "That's odd.  They should generate new questions.  After all, this was already almost two weeks ago."

My brain may be compromised but there's still a bit of Dick Tracy in there.  Was someone generating those questions in ANOTHER situation within the past 24 hours trying to hack into my life elsewhere?  Is that why the questions weren't working?  Femara flashes quickly turned to droplets of nervous sweat despite the fact that you can hang meat in my house. Ultimately, the account was closed, Trans Union was called.  My credit is now blocked by all three credit bureaus AND, I have to keep the monitoring service on my credit for a few months.

Whoever you are, running around as me..... let me just tell you a little about yourself.  You are so determined to BE ME..... Take the fucking license, take my identity and while you're at it, there are a few other strings attached you stupid bitch.

  • How would you like to be running around with amputated tits.
  • Wait til you see how annoying these implants can be.  It really sucks to have NO sensation at all in a highly erogenous zone UNLESS you are itching like a mo-fo.
  • Ready for the bi-annual MRI, bitch?
  • Implants are in five years.  Good shot you will be back in an operating room at some point within the next 3 years for a new set of implants.  The anesthesia part is fun but having that muscle messed with is gonna fuck you up for a long time.  
  • Tattoo's are beginning to fade.  Even though I didn't feel pain, there was a sensation.  You ready to sit in the docs office knowing when they finish one side, you get to start the process all over again on the other side?
  • How about the fact that you look like a woman but every female body part is in a medical waste field somewhere..... And I do mean EVERY part so the surgeon had to rework your anatomy.  I'm sure you have NO clue how great THAT is.
  • You into pills?  Hope so since there's a whole host of shit in the daily pill case.  The smallest pill of all will wreak havoc like you've never seen.  Femara flashes, thinning hair and skin, bone loss.
  • Almost forgot, this massive dental issue thanks to upper jaw bone loss.  That situation is likely leading to something called a sinus lift so your entire face doesn't collapse.  All cancer related and good luck getting the insurance company to pay one red cent.  We're talking enough work to purchase a luxury automobile.  If the money part of it isn't upsetting enough, how about the fact that this is going to be months and months of MORE "medical" visits.  And you hate the dentist. He's a great guy, but the dentist office is a PTSD zone.  This is gonna be great.
  • Then there's the whole cancer thing and that looking over your shoulder shit.
  • I have a few personal issues going on, too.  Some relationship shit.  Frankly, it's beginning to take a bit of a toll on me so I'll gladly let you take that on and do the work to finish putting my personal life back in order.
Yeah, didn't think so.  Lose the license.  THEN I'll tell you about all the really really REALLY great parts of my life because in the scheme of things, for now, the good far outweighs all of this shit.  But, I got this brain shit going on..... and seriously DUDE.... I just didn't need to be thrown off my game when I can't keep my head in the game... hell, I can't even get my head into the game to begin with.

Thanks a fucking lot.  I really needed a dose of aggravation to take with my bulleted list of bullshit.

Happy shopping you stupid whore.




Now.... I would like to apologize to anyone who might have been offended by my language.  Sometimes, a good curse session is the only thing that will do.  This is one of those sometimes......

Thursday, August 23, 2012

HONOR - SINCERITY - INTEGRITY

My plan for today was to just leave you with a photo.  I took the photo.  I have no idea WHEN I took the photo.  I don't know where I saw this but I'm sure it wasn't in a store.  I definitely would have purchased it.  I'm always in awe of those who can capture the essence of something in a simple statement.  Ye of many words.....  Yes, I'm always wide eyed and captivated.  I know this stuff, the sentiment behind the statement.  But to see it so neatly packaged gets me. Every.Single.Time.  and I mean EVERY Time.  The words speak for themselves.  No explanation required:

These are words I must remember to incorporate into my own life.  I'll go on an internet hunt and find a plaque like this so I can hang it somewhere as a CONSTANT reminder.

And, I am also going to make a sign to remind myself to Live Sincerely.  I found this website thanks to Ann Silberman, my buddy who blogs at But Doctor I Hate Pink.  The project, Live Sincerely, is the genius of a young woman named Vanessa.  She is one of the girls photographed in The Scar Project.  (Again, a "trigger" warning.... there are many photographs and they are REAL....... if you aren't up for it emotionally... don't click... there are times we all need to decompress.  Regroup.  Recharge.)

If you want to participate, you can do so on her website.  If you are not a "link clicker" .....  This is the pledge that I signed on Vanessa's website.  I will live by these words.  Like the short and sweet sentiment on the plaque, these words have captivated me, inspired me, enlightened me.    


I will live sincerely.
I will learn from each person and each day on my journey
and will share ideas and wisdom from my own experiences.
With a grateful spirit, I will acknowledge my need for others
and will in turn be loving and generous,
remembering that every member of a community plays a unique role.
I will remain strong in my convictions
while keeping an open mind to perspectives beyond myself.
Courageously, I will respect each movement of my heart,
through fear and joy, grief and peace.
I will cultivate my passions with delight
and also take time for honest introspection.
I will love the person I am today
while constantly striving towards my best self.
I will keep a healthy balance between the rewards of discipline
and the growth and wonder that spontaneity brings.
I will acknowledge both the marvel and the limitations of my body
and respectfully take care of it the best I can.
Accepting the reality that there are circumstances I cannot change,
I will seize my power to actively change that which I can control
with hope and creativity.
I commit to living each chapter of my story:
honoring the lessons and gifts of my past,
fully participating in the fleeting beauty of the present,
and bravely walking towards the unknowns of my future.
Knowing that life is an enduring but glorious struggle,
I pledge to live each day with purpose.

I will live sincerely.


Wednesday, August 22, 2012

XENI: MY DEEPEST CONDOLENCES

Trigger Alert.....

This is a link to the blog of Xeni Jardin.  Before you click the link, I would be irresponsible if I failed to share the contents of her blog post.

Xeni is a breast cancer patient.  She is currently is the middle of treatment.  She is not supposed to be a breast cancer patient, but then, who is?

Xeni is one of the people beyond the computer screen that I have come to know and yes, to love.  I think I felt an immediate bond with her because I was "with" her when she tweeted her way through her baseline, routine mammography. That was in December.

She was wise-cracking her way from the coffee shop to the radiology office.  She was trading barbs with her friends.  I was watching the tweets flying back and forth.  It was humorous.  Some of the tweets were laugh out loud funny.  As the day progressed, the tweets began to take on a more serious tone.  The last tweet was her announcement to the twitter universe that she had just been diagnosed with breast cancer.  I was there.  In real time.  Horrified.  Saddened.

Yesterday, Xeni was on a death watch.  Her boyfriend's sister lay dying in a hospice facility on this coast as she traveled back to the west coast.  She spent time with Aileen.  She was with Aileen until she  was no longer conscious.  Xeni is still in treatment for her own breast cancer.  She had no choice but to return home on Monday.  Yesterday afternoon, Aileen died.

Shortly before she took her last breath, Aileen's brother, Xeni's boyfriend, brought her dog to her hospice bedside so Jethro could say goodbye.  The picture is difficult to view.  But it's real.  This is what breast cancer looks like..... in real life.  It's not a pink ribbon.  It's not a stupid cupcake.  It's not boobstagram or saving TaTa's.  It should have been about saving the life of Aileen.

Instead, she is gone..... two young daughters devastated.  A brother, heartbroken.  Xeni, who is a member of that family grieving the loss of a "sister."

Jethro, saying his goodbye, will stay with you for a long time.  May this photo spur you to remember the reality that is breast cancer.  Close to half a million people around the world will die of this disease this year...... I'd like to strangle someone with that ribbon right about now.  This is wrong.

I hope you will join me in offering your condolences to Xeni, Miles and Aileen's daughters.

It bears repeating.  This is as real as it gets.  It's hard to see but it's important for each of us to bear witness to the reality behind the ribbon.  This is why I fight.  This is why I have no patience for Estee Lauder ads or Java Jugs cupcakes.  Where would you put any of that into a scene LIKE THIS.

Tuesday, August 21, 2012

SNAKE OIL KILLS.

There was a post on this blog in December that is worthy of repeating.

Last night, I participated in my #BCSM tweet chat.  The topic was Alternative medicine and how to weed out the snake oil cures.  It was lively.  I'm willing to go out on that proverbial limb and say this may be on a very short list of most active chats to date.

Earlier in the day, I was watching a live feed from Washington DC about participatory medicine. Actually, it was about much more than that BUT that was the part that most interested me.  That, AND the talk about science based medicine and evidence based science.  It was interactive and I was following a twitter feed as I was listening.

Technology is quite awesome.  I was able to watch (now on a very large "Smart TV" that connects to my wireless internet) and I was able to tweet out some of what was being said to anyone who could not see the feed.  The panel of speakers was impressive.  Among them?  Dr. Otis Brawley who is the Chief Medical Officer for the American Cancer Society.  I saw Dr. Brawley at NBCC.  He is an informative and engaging speaker.  The absolute highlight of my remote attendance in that session?  I sent a question via twitter and at the very conclusion of the program, the question was read and discussed by the panel in Washington.  From MY den via my laptop, to a microphone addressing a room filled with conference attendees and to the other 600+ people in 7 or 8 different countries.  That, my friends, is what social media is able to do.  That is how social media WILL change the world.

Back to Otis Brawley.  During his presentation he began to talk about an interview he did with Larry King.  When he mentioned he was having a discussion on television with a "certain blonde actress" who was selling snake-oil (don't go screaming at poor Otis... those are MY words), I had to smile.  My friend, Xeni just made a brilliant statement in a blog she wrote.  "I think people who sell fake cancer cures are murderers."  Well, Xeni.... I KNOW that people who sell fake cancer cures are murderers.  They prey on those who are at quite possibly the single most vulnerable and frightening moment in their lives.  They prey on that fear knowing some may grab at ANYTHING.  They ARE murderers.

And the blonde actress?  Suzanne Somers.  I'm not a fan of her snake-oil.  Here was MY take on the damage she may have done pitching her bill of goods.  Originally Titled "Taking Advice From A Celebrity May Be Bad For Your Health," this first appeared on December 15.  I still stand by every word.


Here’s my disclaimer.  As I sit here putting my thoughts on paper, the television show has not aired which may be a good thing.  Or not.

Tomorrow, Suzanne Somers is going to appear on Doctor Oz to discuss the “revolutionary surgery to rebuild her breast.”  Let me start by saying I think Suzanne Somers looks absolutely stunning.  She is drinking from the fountain of youth and despite some tragic life events, her smile lights up the stage.  She has an infectious laugh.  I like Suzanne Somers.

However, (you knew there would be a “but”….. ) I hope that people don’t get too caught up in whatever she is going to announce on television.  I don’t remember precisely when Suzanne Somers was diagnosed with breast cancer and I did not closely follow her treatment choices.  I could do a quick internet detour to speak specifically about that but I would be missing the most important point.

I am an actively involved patient.  I’m Inspector Clouseau heading up my own version of The Pink Panther chasing down whatever I could find about my disease, which, fortunately, impressed or more likely, amused my medical team.  I was asking my oncologist about testing my tumor “biology” to determine if chemotherapy was necessary way back in 2006.  Fortunately for HIM, he knew exactly what I was talking about or he would have been replaced.  I can’t know more than my doctor about the newest treatment advances.

The flip side?  My doctors, while I expect them to be at the forefront of everything new in breast cancer treatment, cannot and do not know more about my body than I do.  I ask questions and I take notice of things in my body.  That is just the collateral damage of a cancer diagnosis.  You are all nodding in agreement.  I know.  We get it.  Let the doctor tell me if that pain has to potential to be “something,” or more than likely, is “nothing.”  I’m not a hypochondriac about this either otherwise I’m fairly certain I would have been asked to find new doctors.  Or the more realistic scenario, I would have been treated somewhat dismissively and most definitely would be known as “The Obnoxious Patient.”

Calling the oncologist twelve days in a three week period freaking out about a headache is a very nervous cancer patient (understandably so) or a hypochondriac.  My job, however, as my own advocate is to bring (in this example) the headache to the attention of my doctor and to have my concerns addressed promptly, properly and respectfully.  I have a right to expect answers or explanations.  When I call with the same issue on Monday, Tuesday and Friday in a single week, I earned the obnoxious title and it’s incumbent upon me to consider any suggestions from those doctors about finding ways to manage my anxiety. 

Cancer may be a solo journey but it’s a team sport and we are the most important player on the team.  Everyone on that team should be kept in the loop with all the nuances specific to your disease and the treatment plan.  I can’t think of a WORSE place to seek medical advice than from a celebrity via a television.

Every cancer is different and one person’s magic pill is another’s poison or, perhaps even their lethal injection.  I know in my own case, if I were to follow what Suzanne preaches I would be putting myself at risk.  I can’t take hormones.  There goes my shot at her great sex life and fabulous skin.  For me, it’s a big trade off.  Am I fueling a rogue cancer cell by following her regiment?  The answer is yes.  Quite possibly, I am.

My cancer is different.  OR, my cancer is NOT different and Suzanne Somers just happens to be lucky.  There will always be those who fall on the good side of a statistic.  As I already stated, I don’t know the specifics with regard to Suzanne Somers but I do believe the majority of breast cancers are fueled by estrogen.  Slathering hormone cream or taking pills is not something I would even entertain.  Staying alive and cancer free is far more important than taking a risk because it worked for a celebrity.

I am beginning to see many retweets about the surgery that is going to offer hope to “millions of women.”  I can see this reaching a fever pitch by the time Thursday night rolls around.  The hype is beginning and it’s only Tuesday afternoon as I type this.
I did a little poking around and this surgical breakthrough is a “cell-assisted lipotransfer” which is in a clinical trial and Suzanne Somers is the FIRST enrollee.  The trial is based upon “promising results” of an earlier Japanese study.  I will let those lines speak for themselves.  I have no doubt the surgery was a success or there would be no appearance on Doctor Oz.  I am thrilled for her and I say that with deep sincerity and complete honesty.
I just hope that anyone who is a fellow passenger on this cancer bus realizes they should not be making personal decisions based upon what a celebrity is choosing to do.  My cancer is different.  Your cancer is different.
Learn everything you possibly can about your own disease.  Speak to your doctors.  Reach out to reputable websites like Is My Cancer Different.  Find breast cancer support communities in the real world or online.  Ask questions.  See what Dr. Susan Love is saying.  She did write the book often referred to as The Bible on breast cancer.  Learn how to read statistics rather than parrot a soundbite.  Talk to survivors.  Gather your information.  Make the best decisions for YOU and then, turn on the TV to see the choices made by Suzanne Somers.
I applaud any public figure whose voice will reach millions who is willing to say that all cancers are different and there is no “cookie cutter” treatment.  I am really impressed by those who take the time to explain a little about the nature of their disease to help us understand how they came to their decisions.  And I have enormous respect for those in the public eye who ask us to respect their privacy when faced with a serious health issue.  
It irks me when to hear half a story.  It irks me even more when I hear anyone in such a position make statements that aren't exactly accurate (that's another story that's already been told by bloggers far wiser than I am).  Tell the whole story or, just announce the diagnosis and ask for privacy.  I believe it is incumbent upon anyone with celebrity status to do one or the other.  Go public and tell all or go public and say nothing beyond the diagnosis.  Once you are on an interview sofa, in my most humble opinion, a person who is reaching many and then is unwilling to say anything but “I refused chemo and look at me,” is doing a disservice.  And, quite possibly is advancing some else's disease because there are people in the audience hanging on to their every word.
Her cancer may have been different.  Or maybe she was lucky.  If it was the latter, is that a chance you are willing to take?  I know it’s a chance I won’t take.   I’m sticking with the proven science that is medically accepted by the doctors and researchers around the world.  I like a holistic approach.  I embrace herbs and botanicals as long as I understand what they are doing to my body and how they may negate the benefits of medication that has been proven effective.
Your cancer is different.  Treatment should be custom tailored to your unique circumstances.  When a breakthrough that provides hope for millions of women is available, it won’t be advertised with headline teasers about a celebrity appearance on a popular TV show.  It will be a quiet scientist who publishes a research paper that will hit one of my medical feeds and go viral.

Thank you for the good folks at Is My Cancer Different for asking me to share my thoughts about the FACT that breast cancer is many diseases and one (treatment) size does not fit all.  It's an important message.


Monday, August 20, 2012

BE IN FROM THE BEGINNING: HERE'S HOW

This boggles my mind.  In October, 2008 Dr. Susan Love launched the Army of Women.  Shortly after the initiative began, this is what she said:

"The enthusiasm and energy for this initiative is everywhere. By the time you receive this, there will be close to 250,000 women who have joined the Army of Women, putting us well on our way to our goal of one million volunteers. And the scientists are just as excited! Many have told me personally that they can’t wait to work with the Army of Women volunteers"

As I said, Mind Boggling.  Why?  Quite simply, that was almost four years ago.  The current enrollment in the Army of Women is just under 369,000 volunteers.

ARE YOU KIDDING ME?

It took days to get one quarter of the way to the goal of One Million Women.  DAYS.  It's now four years later and we have only managed to get an additional 119,000 women to join the database.

We're buying cupcakes, we're taking photographs to raise awareness, we're walking, running, dancing. We are buying things that contain ribbons.  Raising money is great.  Some of the tactics are less than stellar, others are quite questionable, many are damn dishonorable.  On the flip side, lots of people are out there working tirelessly and there are plenty of places where the intention of the fund raising is for all the RIGHT reasons.

Helping those in need get through treatment by assisting with groceries, transportation is being done in many communities. It matters.  Lots.  Putting money into the hands of researchers matters, too.  Ask those of us who fear for the next generation and more importantly, ask those who are hoping they don't run out of treatment options before they die of the disease.

Having open studies, funded research AND NO WOMEN?  Quite frankly, that sucks.  We are our own worst enemy.  It's time for meaningful action so we might obtain some meaningful answers.  What's the holdup?  Why aren't women everywhere joining the Army of Women?  I've tried many times to beg and plead and explain what it means to be a part of the Army of Women.

Is it me?  I'm not explaining it so it's easily understood?  Let's try bulleted points.


  • You are NOT joining the Army.  Yes, I did have someone tell me she was too old to join the army.  Or you refuse to join on principle.  You hate the war metaphors.  Get over it.  We can work on the language of cancer but isn't it more important to do something to stop the deaths, to prevent another generation from dealing with this????  If THIS is a reason, let me just say you are being selfish if THIS is the only reason.  
  • You do NOT NEED TO HAVE HAD A BREAST CANCER DIAGNOSIS to join.  The current database is comprised of a larger percentage of NON cancer women.  Surely everyone knows someone with breast cancer.  Most of you have said, "What can I do for you?"  I will answer on behalf of all.  What can you do for your friend/neighbor/loved one?  JOIN the Army of Women.  All Women Are Needed.  Cancer or not, old or young.
  • You are NOT signing up to participate in ANY STUDY nor will you EVER be coerced to join a study.  (And, these are studies--NOT clinical drug trials.  You will never be asked to put anything into your body. EVER.)
  • You ARE signing up to be part of a select group of women who agrees to READ A DAMN E-MAIL.  "These researchers need 100 women in this area to take an online survey."  And YES, I've participated in a number of studies and they've all been online surveys.
  • Afraid of giving out your email address?  The Army of Women database is NOT SHARED with ANYONE.
  • Afraid you are going to be inundated with emails?  No more than three per month.
  • Think you are going to be chased after for money?  Wrong organization.  Some other pink partiers get your name and never let go.  Not here.  You will only be notified of studies that need women.
  • Afraid to give out your information?  First of all, the database is secure.  Second of all, there is only a minimal amount of information collected.
  • The studies are carefully scrutinized by a scientific panel before any email is sent.  The studies are to try to understand why some of us develop breast cancer and why others do not.  The studies are to help improve the quality of life of those of us with breast cancer (and the toll it takes on us emotionally, physically, intellectually).
  • The studies are not to observe how a particular drug works or does not work.  Susan Love is all about understanding WHY so we can stop the madness that has become breast cancer.  When she is successful (note I said WHEN, not IF because she WILL succeed), we won't have to concern ourselves with pink ribbon stupidity since there will be no more "cause" requiring the ribbon.
Imagine a world with no more ribbon.  Imagine, no more boobstagram.  No more Java Jugs Cupcakes.  Imagine.

There are over 150 Million Women in the United States.  Army of Women is now open to women anywhere in the world. I'm not doing a google detour to get world population numbers.  The point?  There are more than enough of us to make this happen.  And to make it happen quickly.

The Dr Susan Love Research Foundation will be rolling out a revolutionary opportunity for all women within the next couple of weeks.  The first people who will know about this and who will be able to share in the opportunity will be those already enrolled in Army of Women.

That's all I'm prepared to share at the moment.  Don't miss the boat to be in on the ground level.  This is going to prove to be the single largest step in a new direction toward eradicating breast cancer forever.  From the little I know (and yes, I do have some inside info), despite every challenge that exists in this brain of mine, I KNOW this is going to change things.  It's going to shake things up.  It's going to be HUGE.

You don't want to miss out.  And you won't want your friends to miss out, either.  Join HERE.  If you happen to be using a phone to read this blog, send a text message.  Here's how.  Open up your text message feature.  Compose a new message. Send it to 46637.  In the message field type: armyofwomen and you will get a reply with a link to the mobile sign up page. Prefer Facebook.  Go HERE.  Fill in the basic information and you are now enrolled in the database.  And the ticker just advanced by one number.

HOW do we do this?  One person at a time.  That's HOW.


   


Friday, August 17, 2012

EVERY PICTURE TELLS A STORY

If a picture is worth a thousand words, how many words are in TWO pictures?

I KNEW I had both of these pictures from the EL Companies (yes, that would be Estee Lauder) but I couldn't locate them.  I KNEW that the bottom photograph was even more disturbing than the top one which was in yesterday's blog post.

I DESPISE these photographs.  I ABHOR these "ads."  I'm not understanding the whole campaign.  If three women looked a bit like an orgy, the foursome looks borderline pornographic.  How is this helping anyone with breast cancer?

Personally, I WAS feeling okay with my appearance.  Now?  Not so much.  Their skin is flawless.  Their bodies are perfect. How does this make YOU feel?  Is there a scar or two on your skin?  Is there a ripple beneath your skin if you have implants?  Are you satisfied with the appearance of any nipple tattoos you may have gotten along the way?  Feel free to tell me I'm being overly sensitive.  Be prepared to explain WHY this is okay.  And please, no one who is "very close to so and so" gets to weigh in.  Unless you are the one with the scars, I'm somewhat disinterested in your opinion.  In other words, this is a case where you can't talk the talk unless you've already walked the walk.

Where is the reality?  Any reality.  Estee Lauder Companies:  Is anyone out there?  Are you listening?  No amount of money can compensate for the damage these photos are doing to my already fragile body image issues.  Please lose these ads.  Keep it real.  THIS is not real.






Thursday, August 16, 2012

RIBBON REGULATION -- IS IT TIME ?

I hate to even suggest what is about to come out of my mouth.  I may actually see the words in a comic bubble above my own head (out of body-ish experience).  I might be having an actual out of body experience where I am looking down at ME asking, "Who the hell is that idiot?"  It might be my shrinking brain.  Perhaps all logic has left my head via my ears as the white matter, gray matter, all matter spilled out on to the keyboard upon which I type.

The Daily BEAST..... Here's their take on The Ribbon.  Broken record... here we go again... but NOT.  I think it's time for.... oh my jeezzzzz.... Don't.Say.It....

DON'T....  Well, it can't be helped, it's likely time.....

*Blurts out*

Pink Ribbon Regulation.

(Thanks to my misfiring brain for blurting before thinking.....)

It's out there now.... and "out there" is on display for us to see.  Within weeks, we will be innundated with the Pre-October extravaganzas.  We will start to see things like this:

Not for nothing..... this has the appearance of an orgy.  Arms, hands, lips.  This isn't awareness.  This is ONCE AGAIN, sexualizing a disease.  Is this what breast cancer looks like to any of you that are intimately familiar with the disease?  Truthfully, do these women look like any NORMAL woman.  Forget about breast cancer... these are not your average women.  On any part of the planet.  


Or.... how about putting an ad like THIS in South Africa where 79.2% of the entire population is black.  More than 65% of the population are female.  Only 10% of the population has health insurance.  Of that 10% with health insurance, only 2% of those are black.  I'm not trying to make a race issue here, I'm merely sharing what was told to me by my dedicated friend Kwanele, a black woman from South Africa who is passionate about seeing change in her country.  She attended NBCC.  She is outraged by this Playtex ad.  Why?  She finds it insulting that in a country where the majority of the population are women of color, why is a blonde, white woman in this ad??  And, she asks, after Playtex funds the screening to find the cancer, who is providing the necessary care to treat those who are diagnosed.  Good.Damn.Question.

My point?  The problem is global.  And it's out of control.  Remember Grazia, my Italian friend who is living in the UK..... She's outraged, too.  Did you see the video... that was another "hot mess" and it is still in the blog post from Grazia.

The ribbon is going to be here for a long time.  We are climbing a steep mountain.  It might be time for us to demand some ground rules.  A set of UNIFORM guidelines.  How's this for starters?  Where there is a ribbon and a company who stands to profit by having their name displayed in the same ad, the company is FORCED to clearly state their mission and their intention.

The Estee Lauder ad offends me on many levels.  Can you figure out the purpose of that ad?  Me either.  What precisely does "Playtex supports CAN/SA" mean?  Obviously, I'm using this to highlight a point.  I don't have a voice in South African politics but I can support my friend who is trying to have her voice heard.

It's time for us to demand... yes, DEMAND full transparency.  If a for-profit entity runs an ad with a ribbon, their intent should be clear.  If their intent is to "raise awareness" I call Bullshit.  The awareness ship has sailed.  If the company is simply jumping on the pink band-wagon to tug on our emotions, they should be stopped.  If they are funding something, full disclosure should be forced upon anyone utilizing the ribbon.  Just like the ingredient labels on our food packages and the nutrition content that is now also mandatory, we need a "content label" affixed to every single thing that dons a ribbon.

I'm not big on government intervention but this situation has gotten so far out of control, it seems to me the consumers need to be protected.  Much of what goes on is false advertising and would not be tolerated under the marketing laws. Cause marketing has no rules.  No regulations.  No uniform set of guidelines regarding disclosure.

This is big business and there are billions of dollars at stake.  No more misleading ads.  It's time to hold everyone accountable.  THEN we will be able to see which companies are lending their name to the ribbon solely for their own profit and which companies are diligently raising funds and filling the coffers of organizations that are worthy of the money WE are spending on their ribbon products.

It's a start and we have to start somewhere.  All this chatter is making my head spin.  I need to see some suggestions. Some action.  Some ideas.  Something to change the conversation.