HOW I WRITE, WHY I WRITE - THE BLOG TOUR CONTINUES

Thanks, so very much, Beth Gainer for this invitation to participate in what is being called a Blog Tour or by some a Blog Chain.  Words matter and that whole chain thing has a negative connotation.  I’m choosing to look at this in the spirit with which it began:  To introduce blog readers to other blogs they may not know about.  It’s a way of sharing and I’m all in on that.

The premise?  Each blog author is asked to respond to the same four questions.   The second part is asking others to participate the following Monday with a post of their own.  Hopefully, they too will have others who’d like to share their thoughts.  Many of my favorite bloggers have already joined the fun.

And now, those questions……….

What Am I Working On Now?

I’m still in the early stages of my Share Those Moments project.  I have compiled the stories of many women and some of their partners to put into a book about cancer and sexuality.  Since I’m not an author, I’m just someone who likes to write, a book project is a bit daunting.  It's moving along, albeit a bit slower than I might have hoped.  Life happens and sometimes, things throw us off course for a bit.  

On the other side of the spectrum, I’m tossing some ideas in my head about finding ways to translate research papers into something that is more easily understood by the rest of us.  The science journals and the published research can be difficult to decipher.  I’m not a scientist but somewhere along the line, I turned into a bit of a science geek.  That gig just flew into my head during the course of a very recent conversation.  Right now, it’s a very small blip on my radar.  Being passionate about research, I suspect that blip is going to grow quickly.

The most pressing, and the most exciting thing I’m working on has little to do with writing but everything to do with advocacy and bringing the patient voice to the table so that we can truly step into the era of patient-centered medicine.  I’m going to do a presentation at the e-Patient Connections 2014 conference in Philadelphia.  It’s in September so I have to get moving.  In a twist of something wonderful, after going back and forth with the organizers to email my presentation ideas, the bullet points, a bio and whatever else they needed from me, I was invited to co-chair the event which is quite an honor for someone who tossed this blog into cyberspace as a big joke.

How Does My Work Differ From Others of Its Genre?

My writing started out quite differently from other cancer blogs.  I’ve written about how and why I attempted to launch my blog.  It was at the suggestion of a dear friend, “You should write a blog.”  I recall biting her head off, fully exasperated at what I perceived as badgering.  We still laugh about it.  I remember my response, complete with the eye roll, “About WHAT? Breast cancer? I’ll guarantee there are about a million blogs about breast cancer.  I have nothing to add to the conversation.”  After doing this dance for about a week, she finally blurted out, “Chemobrain.”  She stopped me in my tracks and I began to do a little digging.  I couldn’t find too many blogs devoted to chemobrain, just posts within blogs about the frustration of life with chemobrain.

In the beginning, I was only writing about my adventures inside my head.  Now my writing has morphed to include all aspects of breast cancer, other cancers, self-advocacy, sharing research, a bit of outrage over things I know are wrong and plenty of other things that my brain is blocking me from recalling.  Recently, I stepped into the world of mental illness which isn’t much of a stretch from where I began.  My brain was damaged by cancer treatment.  People with mental illnesses have things happening within their brains over which they have no control.  I empathize.  Thus, my blog is a bit like my brain.  All over the place.

Besides all of that, I think my work differs because I tend to write like I speak.  I want readers to feel like they are sitting with me as I share whatever it is I’m writing about.  Sometimes, I lose the grammar in favor of writing for effect or maximum impact to create a vivid visual.  I know how to use proper grammar but there are times I deliberately choose incomplete sentences.  I still can’t bring myself to end a sentence with a preposition although after reading this blog, I think this is something I may change.

Why Do I Write What I Do?

I haven’t a clue.  It could be a headline or something that happened to me or something that hit social media when I feel the absolute need to throw my voice into the conversation.  I try to keep my writing personal without dragging my loved ones into the mix.  Their privacy is a big concern.  Just because I will blab about anything as evidenced in my post about how much I love sex which was written in the space where I’m collecting information for the project I mentioned, doesn’t mean my family members are quite so casual about baring everything.  (Yes, semi-pun)

Mostly, I write for me and my hope was to validate the feeling of just one single person who was experiencing the frustration I live with over my inability to perform in my pre-cancer mode.  When it opens up a conversation in the comments, I always participate although in recent months, I haven’t had the time to reply to comments.  I think that’s a bit rude and it bothers me.  If someone takes the time to comment and I DO read every comment, I want them to know, “Hey, I hear ya,” and more importantly, "Thank you so much for taking the time to let me know my words resonated."  I’ve developed many personal relationships which has been an unexpected and wonderful aspect of this.  I cherish those relationships.  This blog was never about me, it was about having conversations with anyone who may be reading.

How Does My Writing Process Work?

The mechanics?  Once upon a time, I could block out the world and write anything in the midst of utter chaos.  Complex business letters outlining all sorts of technical info, no problem; with phones ringing and cross talking and a few interruptions thrown in for good measure.  No more.  Now, I need complete silence or I’m totally incapable of stringing together a coherent thought.  It’s as if chemobrain throws me out of my own head.  I downloaded white noise apps and toss in the earbuds if I’m on a roll and getting distracted or when I can’t concentrate.  Finding words is still a challenge.

Generally, something will pop into my head and I’ll just start typing.  The words seem to pour out of my head and those have been some of my best posts, or more accurately, they are some of my most favorite posts.  When I was blogging on a strict schedule, I had a list of things that I wanted to write about and I would select the one that fit my mood and mindset in that moment.  It’s a bit like Julia Roberts said in Pretty Women, “I’m more of a fly by the seat of my pants type of girl…..” when it comes to any sort of process.

I am a stickler for spelling and grammar which is a challenge.  I do proof read my work, have a love/hate relationship with autocorrect because I need it for certain words that have simply vanished from my brain but when autocorrect thinks I want to write your rather that you’re or there instead of their or they're, I cringe.  Without another set of eyes to read my stuff, I often pick up these things after I’ve already posted the material.  Sometimes, I simply don't see the mistakes until much later.

I really do know how to use the write form of any word.   Ya see what I mean?!

Now, to pass the baton to the next bloggers.

I’ve selected two people that I admire tremendously.  They are completely different in so many ways but interestingly enough, both of them love to knit.  I’ll have to do an analysis of that commonality.  I don’t believe in coincidences.  It’s the science geek in me.  There has to be a reason for every damn thing!

First, I give you Scorchy Barrington, her stage name.  She blogs at Sarcastic Boob and she tells it like it is.  Everything about the Scorchster screams New York.  She was diagnosed with breast cancer after she already metastasized and I’m thrilled to share that she is presently residing in the land of NED.  She’s in your face and she’s not afraid to take on the world.  Hell, she stood up toFacebook about their ban on mastectomy photos and won that battle in about 18 seconds.  She’s great at picking up the baton, any baton and running with it.  That whole Facebook gig is proof positive.  I’m glad she agreed to do this.  Truth be told, I want to see inside that head of hers!

And equally impressive at picking up the ball and running with it is Brandie whose blog can be found at Journey of 1000 Stitches.  She not only runs figuratively, Brandie has participated in the last four (she can correct me if I'm wrong, but I do think it's now FOUR) Avon Walks in Chicago where she lives.  Brandie also tells it like it is.  She writes about her family, she does quilting and takes on all of these other creative projects.  When I look at everything she does, I’m a bit awestruck.  There aren’t enough hours in the day for this stuff when you have three young kids but somehow, Brandie does it all.  Plus, she’s not afraid to open her mouth when something isn’t right.  This post, written after her most recent Avon Walk, is filled with such emotion without being emotional.  That makes no sense, but trust me, read the post and you’ll know exactly what I mean.

I leave you in their capable hands.  I’m anxious to see what they have to say and who they may decide (or not) to seek to continue this Blog Tour.  I'd hoped to have Lori who blogs at Regrounding to round out this relay but I know she is up to her eyeballs in commitments.  (To say nothing of the fact that she's been interrupting her life over these past few weeks to talk me off more than one ledge) I'm going to try to convince her to make this a coast to coast baton pass.  NY-Chicago-LA.  It's got a nice ring but she may not have a second to put anything together.  She is a prolific writer and one of my closest friends.  And if not for our blogs, Lori and I would never have met.

I am, as you might see, really someone who flies by the seat of my pants or more accurately seems to like walking a tightrope without a safety net.

Like it?  Share it!

REMEMBERING SUZANNE

I "met" Suzanne Lemay because of a post in an online forum.  She wrote this two years ago.  She died last week.  And once again, I'm shattered.

Suzanne's first language was French and she would always apologize for her grammar.  I would shake my head in disbelief.  To speak a second language is a big deal.  To write in a second language, even bigger.

Suzanne's words,

I look around me and see ordinary people doing their regular grocery.  This reality is not mine, I feel like I’m in a horror movie, being in a car at high speed, without a driver, knowing I will crash in any moments... but wait, it is worse than that – I am trap in a body, that is so sick and broken that it is dying... with me inside!

That's a glimpse into the thoughts that were running through Suzanne's head.  It was heartbreaking to read the post.

It was July 9, 2012.  This blog wasn't yet one year old but I already knew a big part of my focus would forever remain with the metastatic community.  I asked you, those who were reading, to share your words of support.  You did.  Many of you did.

Today, I grieve as another member of this community is stolen.  This will sting Every.Single.Time.

In memory of all who are gone and in honor of all in lifelong treatment, I'm joining #CountUs.  My name is on the original wall but now, I'm supporting their initiative to keep the metastatic community front and center.  Not just on October 13, but every day.

RIP sweet Suzanne.  You will be missed.  You are loved and you will never be forgotten.

Like it?  Share it!

JULY, A MONTH OF MEMORIES

July.  It's a big month.  Once upon a time, July was great because I love the summer.  Now, although I still love the summer, July holds so much more.

July 3rd, the day my dad was born; the first man I ever loved, my guiding light through some of my darkest days and oh how I miss him today when I could use some of that wisdom.

July 19th, the day my dad died in 2007, just months after I finished my chemotherapy, it would still be many more months before my surgeries were complete.  Grieving death while still very much in active cancer treatment is really quite a mind trip. (Taking my mother for a biopsy shortly after his death and finding out in August that she had a second breast cancer only serves to amp up the mind trip but that was August....)

July 27th, 2006, the day the oxygen was sucked from an exam room at MSKCC where I was having a post surgical follow up for the biopsy that was performed the week prior.  The "You Have Cancer" day.

Technically, today is really my NED anniversary.  And really, do these anniversaries mean a damn thing?  I'd venture to say the obvious: Not.So.Much.  However, on July 18th, 2006, a surgical biopsy performed.  Clean margins were obtained along with a diagnosis of invasive lobular breast cancer which was presumably all removed during, what I have since learned, was referred to as a lumpectomy.  Knowing much more today than I did in 2006, I understand everything that was done after that lumpectomy was for the purpose of risk reduction using evidence based practices outlined in the NCCN guidelines and using every other conceivable available tool, rooted in evidence, to guide my treatment choices.

I was an engaged, empowered, educated patient long before I knew that's what I was doing.  I'm also well aware that even now, at the eight year mark, there is still a bit of looking over my shoulder.  How can I not?  I've seen so much since my baby steps into the world of the equal partnership patient relationship I share with all of my clinicians.  I've seen the distant metastasis occur long after the 5 year mark.  This year, I've seen the deaths of far too many.  It feels like this community has been hit harder than in the past.  The statistical reality?  It's no different.  It's just different in my own circle.  More people in my own circle are progressing, or worse, dying.

Today, I'd like to share, with minor adjustments, the post that appeared in this space two years ago.  My blog was having its one year birthday and I was reflecting on my surgical experience.

Reprinted from July 18, 2012

Ironically, and this really had no bearing on the timing of making this blog public, SIX years ago today, July 18, 2006, I made my way into an operating room at Memorial Sloan Kettering Cancer Center for the very first time.  I was not nervous.  I was having a surgical biopsy.  However, in my mind, the word biopsy wasn't really part of the language of the day.  I had atypical cells removed from a core biopsy and to quote my rock star radiologist, "We don't leave abnormal cells in anyone's body."

That was my frame of mind.  That is how I skipped into the operating room, greeted by my rock star breast surgeon. There was no fear when I climbed on to the operating table.  Yes, MSK is one of the hospitals where you walk into the operating room.  I was asked my name and date of birth by at least six people while someone else was reading the band on my wrist and yet a third person was looking at my chart.  Patient safety and medical errors are high priority at that hospital.  In fact, for the second year in a row, MSKCC was named the second best cancer hospital in the country but in the category that is really of utmost importance, PATIENT SAFETY, they are at the top of the heap.

As I was welcomed to the party, I was asked, "What are you having done today, AnneMarie."  I was at Spa Sloan and I should have replied, "single process touch up and a mani-pedi while the dye is doing its magic."  Instead, I heard the words but couldn't recognize my own voice.  As I was responding in dutiful fashion, my eyes caught a glimpse of a HUGE white board.

I uttered the words "surgical biopsy" but everything began to spin as I saw the word lumpectomy plastered across that white board.  Can't blame the spinning room on the anesthesia, either.... they don't touch you with a single mind altering substance until all of the questions are answered.  The spinning room was because suddenly, I was in a cancer hospital, in an operating room, apparently having a lumpectomy.

Somewhere deep inside, I knew I was headed down a lonely road.  Despite a very large, exceptionally supportive and wonderfully loving family, while cancer may be a team sport with the sheer number of doctors and medical professionals in the game, cancer IS the ultimate solo journey.  That was six years ago.  Today.

And one year ago, I was anticipating the launch of this blog.  I wonder if I even realized today was biopsy day.  I doubt it. I was anxious to see this thing go live.  I was curious if anyone would even realize it was here.  Would I attain the one goal I set for myself?  Validate just one person.  Would anyone even read my nonsensical tales of how my brain seemed to have taken a permanent vacation?

When the first comment appeared, and unlike that movie, Julie and Julia, it was NOT from my mom, I achieved what I set out to do.  It was a short thank you.  Ironically, the comment was made on July 27th.  The Cancer Chasm Date.  Sherry, where ever you are..... THANK you.

The rest?  I'm not going to bore anyone with the details of every single thing that has happened in one year.  My life took a left turn and I turned left and just went with it.  If July 2010 through July 2011 was possibly one of the worst periods in my life, BAR NONE, these past twelve months have more than made up for the previous twelve.

I found a voice.  My voice.  I pursued that which stirred a passion deep from within and it has nothing to do with shades of grey or anything else outside of myself.  I am thankful for a wonderful group of people who have become friends.  I've met quite a few people in the 3D world.  We've stepped out of our computers and into cafes or meetings or the homes of friends.  I've felt a kinship previously unknown to me.  I have a sense of purpose.  Real purpose.

To make a difference
To lend an ear
To steady a step
To hold a hand
To dry a tear
To laugh
To cry
To speak softly with kindness
To shout with outrage

To be a Fearless Friend

Simply Just Be

Me.

Honoring my feelings no matter where they are on the emotional spectrum.  Hopefully acting in a respectful manner whether I'm using my voice or communicating via my printed words.  Agreeing to disagree.  Being true to myself first. Standing firmly in my beliefs.  Never losing sight of the big picture.  Realizing that goals may be achieved incrementally and that's okay.  Keeping a sense of idealism but acting from a place of realistic expectations.

If you've joined me in this adventure, thank you.  I feel the support.  It motivates me each day to do more, to be better, and to bask in the glow of a favorite quote:

It's never to late to become who you might have been.   

 Like it?  Share it!

CHEMOBRAIN, ANONYMOUS: A GUEST POST

Today I'm turning this space over to an anonymous patient. I received an email a few days ago asking me if I would take a look at what is printed below. Not only did I look, I found myself nodding in agreement at every word I was reading. I offered to share Steph's thoughts on this blog.

She did not want her real name used. Steph will be in the job market and fears any potential employer might find this, see how how she struggles and automatically dismiss her application because she is, in a word, disabled.

I'm fairly certain many who read this blog will relate to what she has written. The good news is that the medical community is listening. The not so good news? Presently, there is no solution. There are "work around solutions" which, unfortunately, do little to help some of us regain skills that were second nature in our pre-cancer lives.

My heartfelt thanks to Steph for baring her soul, for validating each one of us who still struggles with the fallout. Chemo, for some of us, is the gift that keeps on giving.

“Seriously, Steph?  You don’t remember me telling you this just two days ago?”

This isn’t the first time the Boyfriend has mentioned something I have forgotten, nor will it be the last.  Typically he’s reminding me of a conversation we had days earlier and I have already forgotten what we have talked about.  However, I have also completely forgotten specific events, like the time friends of mine came to my house.  I have no recollection of their visit.   Why am I so forgetful, one may ask?  

Chemotherapy-induced cognitive dysfunction/impairment

Cancer-therapy associated cognitive change

Post-chemotherapy cognitive impairment

Chemo-freaking-brain.  

The American Cancer Society’s website lists the following as examples of chemo brain:

• Forgetting things that they usually have no trouble recalling (memory lapses)
• Trouble concentrating (they can’t focus on what they’re doing, have a short attention span, may “space out”)
• Trouble remembering details, like names, dates and sometimes larger events
• Trouble multi-tasking, like answering the phone while cooking, without losing track of one task (they are less able to do more than one thing at a time)
• Taking longer to finish things (disorganized, slower thinking and processing)
• Trouble remembering common words (unable to find the right words to finish a sentence)

I had my last chemo treatment in March 2011, but I still struggle with chemo brain.  Most of the time, I can manage and cope with the occasional inability to finish a sentence because I can’t say that one word at the tip of my tongue or the countless times I completely forget why I got up from my seat.   The Boyfriend and some of my friends have found my blank face funny when I’m sputtering out incomplete phrases, but I never let on that I find it frustrating and at times, humiliating.  My hair has long since grown back and my scars have faded, but my brain?  It’s still recovering from four months of chemotherapy.

ABC anchor Amy Robach recently gave an interview to the New York Daily News regarding the affect chemo brain has had on her life: “The chemo brain, the chemo fog, is a real thing.  I would have conversations with people, they would take pictures with me after the show, and they would send them to me and say thank you, and it took my breath away – it upset me tremendously because I actually wouldn’t be able remember taking that picture or having that conversation and for me, that was one of the hardest side effects of chemo.  I was so afraid I was gonna drop the ball, or just do or say something stupid because I wasn’t in my sharpest mode.”

I have joked about my chemo brain (because if you don’t laugh, you might cry), but this is actually a serious problem for me.   All the memory problems, tendencies to space out and forgetful moments have taken a toll on my job performance, and I have come dangerously close to being fired.  This company bent over backwards for me during my treatment – all my treatments, surgeries, appointments, etc.  I considered myself lucky for having such an accommodating company during the worst period of my life.  I never received any flack for needing a half day for an appointment, and nobody admonished me for mistakes I made in my report during chemo.  They treated me with the utmost of patience and compassion.

Several years later, the patience is gone.   It’s been three years since my last chemo treatment, and seemingly ancient history to my superiors.  Ancient history!  Since last November, I have been receiving negative reviews from my superiors, which has caused my stress levels to skyrocket.  (They must have been wondering, “Okay, how long are we supposed to accommodate her?”)  After I realized how bad things had gotten for me, and my stress levels reached epic high levels, my chemo brain symptoms became worse, and the negative reviews kept coming.

I panicked.  I changed how I was approaching my day-to-day duties.  I was positive that I was turning in quality work after a month or two.  My superiors disagreed.  I panicked more.  I had been at this job for more than seven years, and now I was awful at it?  How did this happen?  I certainly didn’t want to lose my job, so I wrote countless notes to myself, setting reminders.  Instead of ignoring my forgetfulness, I decided to embrace and accept it, writing so many notes, I was pretty sure that I was becoming that dude from “Memento.”  Gradually, and I mean like six to seven months later, the negative reviews stopped coming my way, but the damage has been done (including missing out on a merit raise increase this year).   After a long period of positive reviews, surviving several layoffs at the company prior to my diagnosis, I was now a problem employee, one that superiors had multiple meetings to discuss.  

A May 13, 2014 SFGate article reported that studies showed the long-term affect treatment had on those undergoing breast cancer.  The study, according to the article, showed that “employed patients who received chemotherapy treatments were 1.4 times more likely to be unemployed four years later, compared with breast cancer patients who didn’t have chemo.  They were also more likely to report being worse off financially four years later.”

I read that article during the period of negative reviews and my first reaction was, “Yeah, sounds about right.”  

As for how long does chemo brain last, some estimate that it can last up to five years.  A May 4, 2011 New York Times article stated that it may last five “or more” years, citing a study of 92 cancer patients at the Fred Hutchinson Cancer Research Center and published in The Journal of Clinical Oncology.  

“However, verbal memory and motor skill problems continued after five years among a large group of patients.  Although some neurocognitive deficits are expected to occur with natural aging, the percentage of cancer patients who still had cognitive and dexterity problems at five years was 41.5 percent, twice as high as the 19.7 percent reported in the control group.”

That’s definitely not a promising statistic.

When active treatment for my early stage breast cancer ended, I know I wanted to put it behind me.  I was definitely told by my family and friends that they, too, wanted me to put all this illness behind me, and I learned the hard way how much my company also wanted it.  I definitely do not want to convey the message that I’m excusing poor performance solely on chemo brain.  I do think it played a large part, though.  My body, including this battered brain of mine, has been through quite a bit, more than most typical early 30-somethings.

I plan on continuing to complete my day-to-day responsibilities to compensate for these challenges.  Every time I find myself becoming complacent, the feedback I receive reflects such complacency.  I remain diligent and I have to remind myself to be patient, too, repeating frequently, “Time heals all wounds.”  

Even the ones you can’t see.



Like it?  Share it!

WE'RE PARTNERS, NOT TOKENS #OPENACCESS

I just found my soapbox and I'm stepping atop as I type.

I volunteer.  I do lots of advocacy on my own dime.  I wouldn't change a thing about what has gone on over these past three years which is when I first stepped into the world of social media.  I've learned so much, I've met so many different people and the experience continues as a lesson in self-education.

The relationships I've forged are ones I cherish and my life is immeasurably better for having the richness of those friendships incorporated into the tapestry of my own life.  Yes, that means you... and you... and all of you.

In one of my earliest conversations with Lori, now one of my closest friends on the planet, we talked about access to research publications.  We were in a hotel room, perhaps sipping a glass of red wine, unwinding from a day of presentations.  Digesting what we heard, bouncing thoughts around, realizing how much we could not access and trying to figure out how to change this paradigm.

As patients, stakeholders, (the current term which I don't find to be the best word but for now, it's the best terminology available) we should be able to access what is being presented.  My recollection, admittedly not the best at times, is that our conversation took place well over two years ago.  How would we forge a way to gain access to the latest research without paying for every single article that may or may not contain information that we might find relevant or helpful.

My friend and one of the most intelligent people I know, Jack Andraka, has been shouting about paywalls and his frustration over the (customarily normal) $35.00 fee for "ordinary" people to access journal articles.  Although he is primarily known for winning the Intel Science Fair which began a cascade of events that turned him into a rock star, I know that paywalls are a big deal for him.  Me Too.

Paywalls create silos and silos stifle collaboration.  They also make it impossible for patients to be part of that collaborative process unless they have an endless stream of funds.  I don't have an endless stream of funds.  Much of my advocacy is done at my own expense, either directly in costs associated with traveling to different events or indirectly, in the time I spend putting together information when I could/should be doing things to help put food on a table or to keep the A/C operating when the thermometer reads 95 degrees and the humidity is over 50%.

I've been fortunate.  I've also had to step up and spend much more time since the start of this year helping sort out and reorganize some business related office issues.  A real challenge, given my issue with numbers and my lack of ability to stay on task, to organize myself, but with help, it's getting done.  It's also the reason why there has been far less content on this blog.  I miss this.  Lots.

This isn't a bitch session about any of that, but rather, it's to share an initiative that may be of interest to some and should be of interest to anyone who loves the science and is confounded by the roadblocks created by paywalls.

Open Access Button can be found at openaccessbutton.org.  It's a way of crowdsourcing our frustration with the hopes that we can break down or if necessary, scale our way over the paywalls.  I've used it a few times and each time, I was able to gain access to the articles.  It wasn't the journals that provided the access.  I suspect it will be a long time before that changes. The more of us who participate, the more likely we will achieve success.

patientAccess is an initiative of Cancer.Net and a collaborative effort among several organizations and journals.  It works like a charm.  I registered.  I have gotten PDF versions of full articles sent to me within hours of requesting access.  A few other journals have begun their own versions where they charge $3.50 for the access.  That's a far cry from $35.00 but it still irritates me.  And still, there are exponentially more journals that do not allow patient access.  Period.  And yes, that irritates me too.

If our tax dollars or our donor dollars are funding research and in some cases, if we are actually participants in a research study, I think it's a bit disingenuous to ask us to pay any sum of money to read the studies.  I like to write about research.  I don't want to repackage what I'm reading in Science Today or any other publication.

In doing that, I'm simply restating the observations of someone else without reading the actual research to see if there was a point that may have been overlooked by a journalist that may hold tremendous significance to me, the stakeholder.  I want to read the study with my own eyes and determine what I feel is important to me, and to those upon whose behalf I choose to advocate.

As an aside, there was a recent study published that was of direct interest to me and likely to all of us who are actively involved in social media.  Perceived healthcare provider reactions to patient and caregiver use of online communities directly involves each and every one of us.  And yet, I could not read the article, determine the methodology employed or anything else that matters to me.  Ultimately, I was given access to the article by several angels who reached out to me when I mentioned I felt like this was a bit like being talked about behind my back.

When I was able to read the article in its entirety, the very last line before the references is kind of ridiculous:

We would also like to acknowledge Paul Wicks and Dave Clifford of Patients Like Me for their assistance identifying potential participants for this study.  

Huh?  Two years ago.  In fact, two years ago TODAY, on the Patients Like Me blog, The Value of Openness appeared.  It's an interview with patient advocate Graham Steel on the importance of open access.  The Patients Like Me community helped fill a study about online patient communities and then, the resulting publication was blocked from access to patient communities by a paywall???

It doesn't take Einstein to see that something is very wrong with this picture.......


Like it?  Share it!

OUTREACH IN THE AFTERMATH

“In helping others, we shall help ourselves, for whatever good we give out, completes the circle and comes back to us.

I have been on my own personal soapbox regarding how we spend our donor dollars. This is an ongoing theme in this space. Some of us prefer to support research, some wish to support patients during those difficult treatment days, some choose to share of themselves by giving back to the shattered lives left behind in the tragic wake of an untimely death.  And the list goes on.....

There is nothing more tragic than the loss of a child, but for a parent and as a mom, knowing that small children are left mourning the death of a parent is terribly distressing.  Losing a mommy is devastating.

When my dad died in 2007, our family decided to set up a scholarship in his memory at a local high school. We have awarded nine scholarships in seven years. It is always poignant because awards night is always just days before Father's Day and less than a month before my dad's birthday.  It's become our gift to him.

The sole criteria for these monetary gifts is that the college bound student recipient had dealt with a parent with a serious illness at some point during their education. Despite the challenges of caregiving, of having what should be joyful and carefree memories of their high school days tainted with fear, the young people managed to graduate and embark on their next path, pursuing a college education.

In some cases, the parents of these young people survived their illnesses. In others, they succumbed. Tragically, three of our recipients lost both parents in a very short period of time.

One year, it was a dad who passed away.  Cancer.  Mom was the primary caregiver.  She ignored the persistent back pain, chalking it up to the fact that she was helping her husband as his condition weakened.  Shortly after his death, she got herself to a doctor only to learn the pain was not from the lifting and the bending.  It was a symptom.  Pancreatic cancer took her life weeks after her husband's death.

Most recently, siblings were awarded the scholarship in back to back years.  Their mom died of her cancer in her early 50's. Their dad took his own life within a short time of her death.  Some might see that as a selfish act, but I see it as the actions of someone so overcome by grief, so consumed without proper support, it just makes me very sad.  This might spark a lively debate but I am going to respectfully request we all refrain from passing judgment or making comments that are derogatory in nature.  Until or unless we have walked the shoes of another, exactly as those shoes fit on their feet, we empathize or sympathize.  Anything less than some form of understanding makes us part of the problem which does absolutely zero in any attempt to work toward solutions.

There is such an enormous stress and a psychological toll that goes along with caregiving, particularly when it's someone with a terminal illness.  It's the ultimate mind f*k, if you will.  The fact that a caregiver could no longer watch this unfold, that it was so distressing he took his own life speaks to the fact that we MUST do better for the caregivers.

Quite simply, this is tragic and the only place to point a finger is at the impossible hoops we must jump through to access mental health care which has become another very important personal issue. Thankfully, caregivers are being placed front and center because their needs must be addressed.  This is just one family's story and one act of desperation in reaction to what were viewed as (and rightfully so) hopeless circumstances by someone who was in a helpless situation.  I'm sure there are others.  This need not happen.  Yes, We Must Do Better.

And on that note, I want to commend the family and friends of Atalie Bernic.  I met Atalie when she was still a teenager.  The best friend of a cousin through marriage who has since become one of my most cherished friends, I recall the first time I met her.  She bounced in to say goodbye.  She was spending an extended period of time that summer in Croatia.  This was in the early 1990's.  My brain limits me from recalling things in the here and now, but my old memories are vivid.  This scene is vivid as was my reaction to her announcement.  "Croatia," I queried in a somewhat incredulous tone.  Yugoslavia was in the midst of a bloody war.  I can see her face, her brilliant smile and her nonchalance.  "It's fine, all of that stuff is not near where my family lives."

Fast forward almost two decades.  I had been with Atalie on a number of different occasions.  Always that same brilliant smile, the quick wit and a presence that filled any room into which she walked.  It was my friend, "I hate to ask you this......"  and I knew.  It was after my cancer diagnosis and treatment.  "Would you mind talking with one of my friends?"  I believe my response was, "Someone just found out they have breast cancer, Who?"  It was Atalie.

We met for dinner within a short period of time.  Again, vivid memories that I may have alluded to in prior posts.  Her very first words when we saw each other:  "What does this mean?  Am I supposed to be wearing pink?  Do I need to run in these races?  Should I be putting on a baseball cap with a pink ribbon or something?"  She was joking but in joking, she told the whole story in 30 seconds or less.  THAT is the popular view of breast cancer patients from the outside.  And then, reality strikes and it's no longer all of that trite silliness.

Atalie was fine and then, she wasn't.  She was diagnosed with triple negative disease, went through the entire treatment protocol, got clear scans after the active portion of the treatment program.  And then, metastasis.

Initially diagnosed in the mid part of 2010 with non-metastatic disease, the metastasis showed up on scans one year later and in eight months, she was gone.  In a post I wrote the day after Atalie died, I expressed my ire with a lifetime of failures.  That post was written well over two years ago.  In 2 1/2 years what have we seen?  More of the same.  Incremental and very modest gains.  Some are responding beautifully to the new treatments but some is not good enough.  It should be most-not just what we call the outliers.

Atalie's mom has worked tirelessly to set up Atalie's Hope, a not for profit foundation.  She has the ongoing support and assistance of so many of those who love Atalie.  Last week, I attended the 2nd Annual Gala.  The foundation has been set up to help the families left behind.  Most especially, the children whose mommy's are no longer walking among us.

The evening was perfect.  There were plenty of moments when one of us was walking around blinking back tears or swallowing a lump in our throat, but it was perfect.  Atalie would have loved it.  And Atalie should have been here for it.  In her place, were all of those whose lives she touched in such profound ways.

Community outreach.  This is what it looks like and this is the way you bypass the pink and give back to honor those you love. Keep it close to home and keep it close to your heart.  It's a way of celebrating the lives of those we've lost, of keeping their memories alive.  For me, it was a way of saying Happy Birthday, too.

On June 30th, Atalie would have turned 42 years old.  Tomorrow, my dad would have turned 78.  Both gone, each never forgotten and in the aftermath, those of us left behind, trying to make a difference for others.

Like it?  Share it!