Friday, September 28, 2012


I didn't know what I was going to say today... Today, my final post for the month when we are supposed to be throwing our support behind other cancers.  NOT breast cancer.

It is my sincere hope that October 2012 will not be yet one more year where we hear much, see much and after 31 days of Official pIN(k)SANITY, find ourselves standing at these very same crossroads having not really DONE much.

My #BCSM twitter group is cooking up plans to #RedefinePink.  There will be a hashtag for the metastatic community. Those on twitter will begin to see #MBCAware emerge in the tweet streams.  I liked the way one of the mets patients began to reply to some misinformed tweets using #GetReal ....  Hint.  Read yesterday's blog and you might figure out who was sending out the misinformation.

A suggestion to the twitterverse?  Let's all use the same hashtags.  I'm not going to stand on a bully pulpit and suggest what hashtags should be used but if we stay on point by promoting one hashtag for each "thing" that needs to be addressed, we will gain fair more visibility.  Just thinking out loud.  Feel free to use the comments to share.  ONE voice. We need one voice.  One very loud, extremely focused collective voice.  I may not be able to do the focus part so well, but loud?  Hell yeah, I can do loud.

Last year we did lots of talking.  We are in the same place with the pink ribbon nonsense.  Not okay.  Awareness?  Done. No need to turn Facebook pink or discuss bra colors.  Been there, done that, got the T-shirt, nicely filled compliments of a highly skilled surgeon.  thankyouverymuch.  I'll pass on that.  We all know about breast cancer.

The metastatic patients need #FearlessFriends.  They most assuredly deserve more than one damn day in the midst of the craziness.  I've said this in prior posts.  We triage.  Stage IV FIRST.  First, we insist that research to save lives, their lives becomes a huge priority.  I've watched too many die, I watch too many more suffering, I watch still others hoping they remain NED and their drug cocktails continue to keep the disease silent and the rest of us?  We should be watching over our shoulders knowing fully 30% of early stage cancers will turn.  Some of us will be betrayed again by our bodies.  One collective voice.

This year, the static and the noise and the distractions will be amplified.  In addition to the insanity of Pinktober we can pile the political rhetoric on to this heap.  Emotions are running high and they will be at a fever pitch five weeks from now.  Put on the blinders, tune in that station and lower the noise in the background.  Let's remember we are all on the same team. We will choose a president.  We will choose our religious path including the path of no religion.  We should choose to see that the money thrown at pink is spent wisely because we most certainly did NOT CHOOSE to be indoctrinated into this club.

Now, if you will excuse me.  I have to pack some clothing.  I was invited to a yoga retreat for cancer patients.  I will spend two days tuning out so I can return on Sunday evening recharged and ready for whatever gets thrown my way.

Huge thanks to the Foundation for Living Beauty in California for arranging this first ever East Coast weekend which is being co-sponsored by The Retreat Project.  Extra special thanks and huge hugs to my friend Deb who also volunteers with DSLRF for sending me the information about this weekend.

For Deb......I should have thanked you on the phone last night but alas, I couldn't hear you!  It should have been my big mouth that was muted on that call.... not yours!

The calm, centered breathing begins now.  Now to keep the damn iPad disconnected........  And no, I can not travel without my technology.  Or my chocolate, either.

Thursday, September 27, 2012


Surely, everyone has seen Dirty Dancing?  There are so many reasons why I have a certain fondness for that movie and Patrick Swayze's sultry moves on the dance floor would likely be high on the list.  Higher on this list?  It reminds me of the summers we would spend in the Catskills when I was a teenager.  I can relate to certain aspects of the movie.  Bringing those memories back into focus is, I am sure, is at the top of MY list when I assess my true fondness of that movie.

Few movies spawn lines that become classic.  Dirty Dancing is one of those few.  Say it with me.  In unison.  "No one puts Baby in a corner."  Before Baby was in that corner, she was, according to her tone deaf sister, "quite the little joiner."  I suspect big sis might have been dealing with a bit of irritation.  I suspect she wanted the Bad Boy.  How positively humiliating that her little sister got The Guy.  My theory?  The sarcastic tone with the "joiner" crack was an attempt to release some of that jealousy.  Why does any of this matter.  What is its relevance and where are we going today, Miss Chemobrain?

Last year, I became a "Joiner."  Last year, I signed off on about 50 pages of disclaimers, disclosures and who knows what else so that I might be part of a clinical study.  About chemobrain.  A study that I helped to expand because I pushed my way into the office of the doctor doing the research.

The initial assessment for my eligibility was over the phone.  I spent thirty minutes with the research assistant doing tests. Word recall.  Number recall.  Back to the first word list.  How many words could I still recall after five other tests were tossed my way? My brain hurt when we were done.  Hours later, I was bitterly disappointed when I was told, "Good news, you passed."

I may have started crying when I got off the phone.  It wasn't exactly that I "passed." A more accurate assessment?  I didn't fail quite good enough to qualify for the study.  After a few days of the persistent taste of that bitter pill, I contacted the research assistant.  I was prepared to pay out of pocket for a proper neuro-cognitive evaluation.  I wanted the names of any doctors that were familiar with the specific tests they administer to evaluate the portions of the brain that seem to be compromised when one experiences what I lovingly refer to as chemobrain.  Ok... lovingly is a stretch.  The fact that the person doing the evaluation must be skilled in dealing with cancer related cognitive issues however, is positively essential.

Those who research and KNOW that chemobrain is real are also acutely aware of the fact that the "testable" things can be oh-so-subtle.  To pinpoint "issues" requires specific tests and I wanted to have my messed up brain tested once and for all. I was tired of being told it was all in my head.  Yes.  I KNEW it was in my head.  The problem?  While those around me kept telling me it was in my head, they didn't really believe it. How could they?  Words matter, folks.  On the one hand, I was being validated, "It's all in your head."  On the other hand, I was being mocked.  "It's ALL IN YOUR HEAD."  Same words.  Big difference.

I had an appointment for a private evaluation with Dr. Elizabeth Ryan at MSKCC who happens to be the doctor who is conducting the study.  It's ongoing.  No results have been published.  But, one year ago, thanks to a great meeting with Dr. Ryan, she requested a slight adjustment in the eligibility criteria.  Her slight adjustment turned me into a failure.  In other words, IN.  I was in the study.  I've never been quite so elated knowing I was a complete and utter failure.  My failure was a success.

Lo and behold, I was signing those papers, finishing up some more crazy tests and ultimately, leaving her office with CogMed software to exercise my "working memory."  One year ago, I was in the middle of the five week training session. I was re-evaluated weeks after completion and then again three months later.  Today, I have extension training which I can do twice a week.  I purchased Brain Age and a Nintendo DS.  I won't know the results of the study until it's filled, finished and ultimately the data are analyzed.  I suspect the results will be similar to the study out of Stanford that was recently published.

Yes, there are problems.  Empowering to hear.  Validated, vindicated, verified.  No, I don't think the games are helping me do anything other than get better at the games so I'll stick with the advice of the good doc.  "Focus on what you CAN do."  I know what I CAN do.

I can bitch blog and there will be plenty of that in the weeks ahead.  I'm already irritated at Guiliana Rancic.  She's using her breast cancer and leveraging her celebrity to be a spokesperson for early detection when 30% of "early detection" will go metastatic and once metastatic, chances are on the excellent side, breast cancer will be the cause of death.  The mets patients were pissed off the other day when she had this whole social media thing going on.  I got REALLY pissed off last night when I saw she is hawking a line of clothing on HSN and donating ONE PERCENT of the purchase price to a breast cancer organization.  One-freakin-percent.  Really??  REALLY???

It's bad enough when others turn breast cancer into a cause and profit on the cause.  It's a damn slap in the face when another breast cancer patient uses her celebrity and her popularity to disseminate information that isn't 100% accurate.  To jump on the breast cancer bandwagon and generate a warm and fuzzy feeling to get a few more people to purchase her clothing line on HSN so she can donate $0.70 each time a pair of $69.90 jeans is sold, I find sort of disgraceful.

Be warned.  Do it right or don't do it at all.  When you do it wrong, it's insulting and it demeans those of us who resent being a for profit commodity.  I'm not a commodity.  I'm a woman with a breast cancer diagnosis, living mostly a great life but on occasion.... with that fear OR having a PTSD moment like I had last Friday.

I hear the arguments.  Isn't donating money great as long as it's going to a worthy organization?  Yes, indeed it IS.  My gripe?  Launch the clothing line and leave breast cancer out of the equation.  THAT'S the high road.  That's the classy road. Take the profits from the clothing line and just cut a big fat check to Bright Pink and don't say a word.

Why is it necessary to go public?  Popularity?  The Limelight?  Who knows?  Who cares?  I'll tell you who cares.  Those who are being, once again, buried beneath that Bright Pink Ribbon.  Once again, an inconvenience.  Once again, ruining the whole gig... destroying the message of hope..... so instead there will be twisted stories pandered about.

Guess what?  That's NOT alright with me.  I'm Miss Anti-Congeniality.

The big question?  Who's gonna show up and make this grand announcement ala Patrick Swayze:

Nobody -- and I do mean NOBODY --- puts AnneMarie in a corner.

Wednesday, September 26, 2012


Hold your horses on the pink stuff.  We aren't quite there yet.  It's still September.  Let's have a little respect.  It's not Pink.  Not Yet.

It is, however an awareness week.  This week is National Hereditary Breast and Ovarian Cancer Awareness Week.   Today, in the middle of the awareness maelstrom of THIS particular week, is “National Previvor Day.”

I have come to learn lots about what it means to be a previvor and how to calculate a proper risk factor.  Last year, when I came upon the chart below, I was troubled.  This year, even more so.

I am part of what is a family cluster of disease.  Although both of my BRCA genes have mutations, they are of unknown significance.  And my mom has no mutations at all.   One of my sisters matched one of mine.  On the genetics front, it certainly seems like my family cluster could be a mutation they have not yet identified.   I have two sisters.  In four first degree relatives, we have what amounts to five breast cancer diagnoses?  Mainly under age fifty, pre-menopausal.  Not really great.

In the past year, I learned much about what it means to have to watch with vigilance.  I had choices.  I had to make decisions.  I also had a cancer diagnosis.  I agonized over my decision.  I hated that I was making a conscious choice to permanently alter my body.  Today, I know it was the right choice but still, it hurts.  Emotionally.  Why?  Who the hell knows.  I can intellectualize and come to a clear, rational and logical place.  Try getting the brain and the heart on the same page?  Some days yes... others, not so much. 

Those with NO diagnosis who are still faced with difficult choices have it far worse.  No disease.  Yet.  Possibly no disease ever but it's a game of russian roulette.  The thing with the previvors?  It's not a single bullet in just one chamber.  It's more like the reverse.  It's bullets in all BUT one chamber.  I have become quite close with some who have been in this most difficult place and my heart aches for them.

I mark today because a label has been placed upon my daughter and upon my nieces, too.  Previvors.  Today is their day.  I don’t WANT them to have a day.  At least not THIS day.  I want them to have birthdays, graduation days, wedding days... not days of potential gloom.  They all fall into the strong box on this chart.  And they will stay in that strong box until research finds the key to unlock whatever mysteries lie just beneath the surface.  Until research finds a way to make prevention a reality.  I have a vested interest in pushing this agenda.  It's the entire next generation.  It's my daughter.

I don't want my heart shattered like my mom's was shattered.  I know mom felt worse than I did when she heard "cancer" -- once, then twice and then barely dodged the third bullet.  Three daughters.  Three "situations."  I don't want to put that shoe on my foot.  So I will continue to push.  There is no other option and it IS just that simple.    

Risk CategoryFamily History*ExampleEffect on Cancer RiskWhat You Can Do
AverageNo first- or second-degree relatives with breast or ovarian cancer


Just one second-degree female relative with cancer of onebreast diagnosedafter age 50
Grandmother with breast cancer diagnosed at age 75Typically not increased, similar to the general population risk
  • Mammograms or other breast examslearn more
  • Make choices to reduce your risk learn more
  • Discuss any concerns with your healthcare provider
Genetic testing isnot typically useful for this type of family
ModerateJust one first-degree female relative with cancer of onebreast (diagnosed at any age)


Two first- or second-degree relatives (female) with cancer of onebreast diagnosedafter age 50


Just one first- or second-degree relative with ovarian cancer
Mother with breast cancer diagnosed at age 68 and maternal aunt (mother's sister) with breast cancer diagnosed at 62


Sister with ovarian cancer
Somewhat higher than the general population risk, but most women from these types of families will not develop breast or ovarian cancerTaking action may be of greater benefit for women with a moderate vs average risk family history.
  • Mammograms or other breast examslearn more
  • Make choices to reduce your risk learn more
  • Discuss any concerns with your healthcare provider
Genetic testing isunlikely to be useful for this type of family Exception for families of Jewish ancestry
StrongTwo or more first- or second-degree relatives with breast and/or ovarian cancer,if at least one breast cancer:
  • was diagnosedbefore age 50
  • involvedbothbreasts
  • affected amalerelative
Sister with breast cancer diagnosed at age 40, paternal aunt (father's sister) with breast cancer diagnosed at age 45, paternal grandmother (father's mother) with ovarian cancerNot all women in these families will develop breast or ovarian cancer, but risk is much higher than general population
  • Talk with your healthcare provider about genetic counseling for cancer risk
Genetic testing maybe useful for this type of family.Learn more

This table provides information about average, moderate, and strong family histories of breast and ovarian cancer. This may help you determine if your patient has an increased risk for these cancers based on her family history. Not all families may be found in this table. If you have concerns about your patient's family history of breast or ovarian cancer, please talk to a trained genetic professional.
*First-degree = parents, brothers, sisters, children; second-degree = aunts, uncles, nieces, nephews, grandparents, grandchildren

Tuesday, September 25, 2012


When I walked through my door last Friday, two things were waiting for me.  The first, a box delivered by Fedex.  The other, a letter delivered by the post office.  When the letter from the IRS was the highlight of the day and brought me greater joy than the box containing the coveted iPhone5 ON RELEASE DAY.....  that says a bit about a not so great day.

What happened?  Frankly, I was blindsided.  I'm okay today, but on Friday?  Not so much.  Was a time I would joke about PTSD.  I'd goof around about how I was great in a crisis, WHILE the crisis was unfolding and throughout the duration.  Then, once the winds calmed, I was simply done.  Good for nothing, DONE.  Stick a fork in me, DONE.  Just. Done.

I know lots of what I say may be redundant but for those who may not have heard in prior rantings, I am involved in lots of "stuff."  Perhaps, too much at times but for the moment, as that saying goes, "it is what it is."  And whatever "it" is, all of it means lots to me so none of "it" is being cut loose.  And all of "it" began at the hospital where I was treated.  And part of "it" involves volunteering at the hospital.  If one person is a teeny bit less fearful because I was able to just listen and share my own fears, I'm making sense out of the senseless.  Cancer.

It's a sucky word to wrap your brain around and I've said this before, when you are the one in the gown and the word cancer hits the airwaves, the oxygen is sucked right out of those airwaves.  Time passes and it becomes a part of the tapestry of our lives.  I made great progress this year.  SIX years ago, I was on the runaway train.  Every year, those dates would be looming ....  every single date .... big deal dates and no so big deal dates and every date in between.

For me, no dates were more difficult than diagnosis date and big surgery date.  July 27 and September 19.  2006.  Last year, they mattered.  Lots.  In 2012, as those dates approached, they were nothing more than the next days on a calendar. Both days, it was after 7PM before I realized, "Big Date" (and not "hot date" kinda big date either...if you know what I mean).  That's huge.  In the scheme of moving beyond and into the next phase of whatever one likes to call this, definitely HUGE.  For the record..... some might call it their cancer journey and in many respects, it is a journey.  Most of the time, however, it felt more like an obstacle course or a collision course.  Now, it's just part of who I am.  The most important word?  PART... I am not my cancer.

Cancer does not define me but cancer has shaped who I am today.  It has carved the direction of the path upon which I travel.  I have my moments.  I do not like living while looking over my shoulder which happens at times.  It goes with the territory.  It's the haunted house.  Never know when a ghost might jump from behind a corner, always when least expected.

Last Friday, a ghost jumped out at me.  I was at the hospital visiting patients.  I fully expected it would be a quiet day.  The social worker leaves me a list of patients and room numbers.  I don't just walk around arbitrarily and decide if I should pop in for a chat.  Everything is on one floor.  It's the breast cancer floor.  It's M10.  Only four patients on Friday, September 21 and as approached the first two rooms, I skipped past.  One woman was sleeping and the other had medical staff at her bedside.  The other two patients were in the same room.  Rarely does it happen that I visit both patients in a room.  Don't know why but last Friday was only the second time that happened.

As I glanced at the sheet and began walking toward the room, I felt a flood of emotion consume me from head to toe. Something began firing in my brain.  It was the numbers on that paper.  It was the date, it was the room number, it was a FULL BLOWN flashback.  I was having a PTSD flashback.

I realized it was the anniversary of my discharge from the hospital.  On September 21, 2006, I walked out of the hospital, my body forever altered in ways that still mess with my mind.  The person who walked through those doors on 9/19 didn't resemble the woman who exited the same doors on 9/21.  As those thoughts were racing through my brain, I approached that first patient.  I walked through the door and into the room and there was an eerie familiarity.  I was in my room, that was my bed, MY side of the room.

I visited, we chatted and ultimately, I stepped on to the elevator and blinked back the tears.  I walked the corridors to the exit of the building, swallowing the lump in my throat.  I got into my car in the garage, willing my body to cooperate until I could get myself and my car home in one piece.  Can't drive with tear-filled eyes.

When I arrived home, I stopped fighting the tears.  I've come far, but clearly, one never knows when something will trigger those overwhelming emotions.  It wasn't being in the hospital, it wasn't walking into that room, it just WAS.  Because it IS. And because it will always BE.  There. Lurking.

I let my guard down.  I was confidently past those big days.  Until I was blindsided.  There's a lesson in there somewhere but I don't think I'll ever learn that particular lesson.  It's one over which I'll never have control.  Once betrayed by my body, these moments will happen.  And they will be just that.  Moments.

And today?  The moment has passed.  As for that letter?  A huge thank you to the IRS for their letter of forgiveness over my screw up with a payroll tax deposit.  Years of impeccable pre-chemobrain reporting got me a pass.  The phone?  Still sitting in the box.  Maybe tomorrow.


Monday, September 24, 2012


Big news is coming from the Dr. Susan Love Research Foundation.  In precisely one week. October 1. I wrote a blog post one month ago.  Be In From The Beginning: Here's How

DSLRF is looking for all of the bloggers to join together on October 1 to pledge to Blog with Love, to Act with Love.  And it poses a question.  "How will YOU make breast cancer history?"  Lots of play on words going on but I can assure all, we ain't playin' anymore.  We are going to make breast cancer history by making breast cancer history.

If you have a blog and care to act with love and partcipate in Blog With Love, sign the pledge here and you'll get one of these neat little badges to put on your blog.  Next Monday, we can take those first steps toward making breast cancer history and breast cancer history. Together.  One silly little blog at the time.  (That would be mine.... the silly little blog's my pet name for THIS blog)

Not a blogger?  No problem..... there will be a link for you to share in the FunFest on Facebook.  (I know.. I KNOW.... no FB link... It will be here on Monday.)  We're in it to END IT.  And we're all in this thing together.

In one week, on October 1st, you will know HOW.  The world will be introduced and we should begin to see things start moving.

HOW?  Health of Women study.  THAT is HOW.

Breast cancer awareness month will begin in one week.  Last year about this time, I sat beside Susan Love and listened to her say "We are sufficiently aware."  A-freakin-men.  We are aware of the disease and we are all passionate about seeing change.  Each and every one of us will be able to play a small role in being a part of that change.

HOW is a groundbreaking initiative that will involve all of us... directly.... anyone over the age of 18, ANYWHERE in the world.  WE are the puzzle pieces.  We will be able to provide information and perhaps some common threads will begin to emerge.  The goal is the same goal that Dr. Love has been about for decades.  End Breast Cancer.

You can read more about it by visiting  I will share more about this next week as part of my pledge.  DSLRF is about to turn current research practices on its head by facilitating a way for true global collaboration.

I know I beta tested the first module and I think a few randomly chosen members of the Army of Women were invited to join the study last week.  Cat's out of the bag and by next Monday, before jumping on the pink bandwagon, first DO something.  NOW you know HOW.

HOW will make breast cancer history by making breast cancer history!

I have a new mantra.  Wanna hear it?

"Those who can, should and those who know, MUST."

We Can AND We Must.  Like I said.  In - It - To - End - It.

Let me show you HOW to be a part of history.

Let me show you HOW to truly Act WITH Love.....

Friday, September 21, 2012


I am not a bully.  Mostly.  There are times I might attempt some strong arm tactics but it's usually in a back door kinda fashion.  I'm just not the bullying type.  Sadly, I got the bully cancer.  C'mon.  This isn't breaking new ground.  We all know that our pink fatigue can, at times, translate to pink DISGUST for those who were diagnosed with cancer.  Any cancer.  Just not breast cancer.  I've participated in volunteer meetings where this topic was discussed.  I've talked about this with others.  In fact, the other night, someone left a comment on this blog.  I agree whole-heartedly:

What makes my blood boil is there are so many cancers and it is insulting to other cancer patients that breast cancer gets all the attention. Because its breasts!

September is awareness month for many cancers.  NOT breast cancer.  Yet, we're all geared up as we've seen in the past couple of posts.  I have come to befriend an woman who was a childhood cancer patient.  We met on twitter and it was partially because she was very interested in the ongoing mention of #FearlessFriends.  Those of us in pink align ourselves as fearless friends beside our sisters with Stage IV disease.  For EVER. Fearless.  Making Noise.  I want to share this fearlessness.

Stephanie Zimmerman is one of the founders of an organization called My Heart Your Hands and Stephanie's story is one everyone should hear.  I am a volunteer at a cancer hospital.  The pediatric patients have their own floor, their own world and that floor is OFF LIMITS.  If you aren't a patient, a parent or an employee on that floor, you need a damn good reason to get through the doors.  The children are well taken care of throughout their treatment.  I know they do the same at St Jude's and I'm sure similar models are in major cancer centers and hospitals all over.

Childhood cancers are the cruelest cancers of all.  ONCE, in all of the time I was in the hospital, did I encounter a child in treatment.  This image was burned into my brain.  Pushing a baby in a stroller, cradling a toddler on her hip and holding the hand of a little girl donning a mask and a cap, I can still hear the soft cries and this mom soothing one of those children. I don't know how she happened upon that particular scan area, but THAT mom?  I can still cry when that scene pops into my head.  Another one I will take to my grave.  Ending the week, apparently, the same way it began.

September is Childhood Cancer Awareness Month.

I'm turning this over to Stephanie, in her own words, to tell her own story about what it's like to be a cancer patient at the ripe old age of EIGHT.  It's what happens afterwards.... long after the cancer is cured (they do use that word).  It's a reality that must be shared and it's why we must insist on better research across all cancers.  We must let people know the importance of participating in clinical trials and research studies.  We must honor those who FEARLESSLY choose to donate their organs.  And it's why I am a #FearlessFriend Now Too, to Stephanie and to all who walk this path, this MOST difficult path.

MyHeart: NOT my Own

Let me begin by saying that I am an ordinary wife and mom doing life in the metro Atlanta area, but my life has been extraordinary. Even so, you will find that I am more like you than not as you get to know me. 

I was diagnosed with Ewing's Sarcoma, a rare form of childhood cancer, at 8 years of age when cures were not thought possible, especially in children. My parents were told that I would likely die within 6-12 months; however, they were offered treatment as part of a clinical trial. Believing they had nothing to lose yet everything to gain, my parents agreed to enroll me into a prospective, randomized clinical trial investigating dosing and scheduling of the chemotherapy.

I completed 21 months of treatment comprised of 30 radiation treatments to my left chest and chemotherapy consisting of Vincristine, Cytoxan, Actinomycin-D, and Adriamycin.

To my knowledge, I remain the sole survivor of a study that has been instrumental in determining today's best approach to the treatment of Ewing's Sarcoma in the child diagnosed today in 2012.

During my treatment days, I found myself desiring one thing, the company of a fellow traveler. In a day where cures were not common, such fellowship was not readily available. Compelled by that desire, I chose to enter into clinical practice first as a bedside nurse, then as a nurse practitioner serving children and families facing childhood cancer.

I believe that my lived experience enlightened my clinical practice and the children and families I cared for were well served by the fact that I was a survivor of childhood cancer though it was the few who were privy to my medical history.

My life story includes marriage to my college sweetheart and the birth of our son who quite candidly is the child I was told I would never bear.

The reality is that cure[s] do not come without consequence[s].

The treatment that I received left significant and irreparable damage to my heart, lungs, musculature,  my shoulder girdle, and my left chest wall.

In particular, the combination of chest radiation and Doxorubicin damaged my heart's ability to “squeeze” blood to the rest of my body while leaving my left lung fields “whited out” with fibrotic/scar tissue. I have a significant curvature in my spine due to the unilateral radiation of the tumor bed, my shoulder girdle is deformed due to damage to my collar bone such that it rotates inward and forward causing 'winging' of my left shoulder blade, and my chest wall underdeveloped and collapsing the upper lobe of my left lung.

I read that paragraph and I sound like a living, barely breathing, contorted train wreck. Truly, I am not.  I am attaching a picture to prove it :)

Our son, a babe I was told would never be because my heart would not be strong enough is our joy boy. He's lived a lifetime in 9 years filled with one trial after the next, yet his joy is abiding because it is not grounded nor dictated by circumstance. Amazingly, my heart functioned normally throughout my pregnancy and only towards the end of my term did my lung capacity diminish, yet despite the challenges, we welcomed our son to LIFE in April 2003. My heart spit and sputtered with the post partum diuresis that takes place, but was managed medically and I bounced back to normal. Normal in my world is likely abnormal in your world. Essentially, my heart function bounced back to 30%, my normal, compared to 60-65% most people's normal.

It was in 2006 that I was counseled that my heart function was slowly declining and the recommendation was made that I undergo valve repair surgery in the hopes that my heart muscle would then be able to function at a higher level.

I underwent that surgery in 12/2007 at the Cleveland Clinic in Cleveland, Ohio.

The surgery was successful in restoring the heart valves to optimal function; however, I did not recover as my heart muscle became nothing but a flutter with about 5% squeeze in early February.

By mid-February, my body became refractory to medical therapy and we learned that my case for transplant locally had been declined. I was admitted locally for the last time in mid-April with end stage heart disease one week away from evaluation for heart transplantation at the Cleveland Clinic.

Life-flighted to Cleveland on 4/19, submerged into a coma, then placed on ExtraCorporeal Membraneous Oxygenation support and listed with UNOS** as a status IA [life expectancy less than 30 days], I received the gift of an opportunity at continued LIFE through the death of a 17 year old young lady who checked “yes” at the Department of Motor Vehicles.

Today, I find myself once again compelled to give of my heart, my LIFE into the hands others that they might take heart and glean some benefit as a result.

This life I will live is full of hope and future and inasmuch as my heart is not my own, neither is my life.

To that end, I have joined hands with Judy Bode who lives the daily reality of a heart now failing secondary to radiation therapy used to cure her of Hodgkin's Disease as a child in the founding of myHeart, yourHands Inc.

Our battle cry is late effects of cancer therapy.

myHeart, yourHands is a not for profit aimed towards raising awareness regarding the potential late effects of cancer therapy among ALL cancer survivors and the frontline healthcare providers charged with their care as well as to inform the population at large about the critical need for registered organ donors.

I invite you to visit us at and I thank you for your thoughtful consideration of our stories in relationship to your network.


**AM here, back with more info---

UNOS?  United Network for Organ Sharing

Clinical trials? is a good place to start

Late effects of cancer therapy?  I can make a joke about my worsening chemobrain..... or I can let Steph's words stand alone.  People are in dire situations from the treatment that "saved their lives."

It's no joke.  We simply MUST do better. 


Thursday, September 20, 2012


The title really does say it all.  Grab the popcorn, call a few friends and I'm going to give someone a copy of Pink Ribbons Inc.  I'm not a "give away" blogger.  Frankly, I think I'd feel badly for everyone whose name remained in the hat and I might be inclined to send consolation prizes to those who didn't win.  And I'm guessing the consolation prizes would be me purchasing the item I was giving away for EVERYONE.

Someone can suggest the criteria for deciding the winner.  Or I'll figure it out as I go along.  The only thing I know is this: I have a copy of the DVD to give to someone.  I am sticking with the fact that it has to be someone in the US or Canada.  I believe there are different DVD formats and I don't want to mess with anyone by sending a DVD that can't be played.

Enough of the wise cracks.  The fact is I was offered the DVD by the folks at First Run Features.  I blogged about the movie before I saw it in a local theater.  I had a near breakdown after I agreed to do a live radio interview on behalf of Breast Cancer Action in advance of the NYC release.  And, the best thing EVER is the fact that I made a new friend because of the movie.

Sandy Kugelman is one of the women interviewed in the film.  There are a number of women whom I hold in the HIGHEST regard featured in the movie.  I'm going to refrain from the name thing.  I'll forget someone.  Pink Ribbons Inc, for those who may be new to this blog, is a documentary about the pervasive pink ribbon culture.  There is a maelstrom of topics touched upon in the film which speaks volumes to the amount of work that must be done to put things back on track. A runaway train, first derailed and now totally wrecked.  First, we must repair the train.  Then, we put it back on the track. Truthfully, first we need to pick up the pieces, then repair, then get it on the RIGHT track.

Pink Ribbons Inc should be required viewing for anyone who doesn't understand the big business of The Ribbon.  I have posted about what everyone must do when they look at a ribbon product.  Although the movie raises so many issues, as we approach the month when billions will be thrown at anything with a ribbon.......I'm choosing to keep things to three basic questions:

  1. How much is being donated?
  2. Where is the donation being sent?
  3. What are THEY doing with the money?

When the hype calms down, we can dig into the disgraceful ways in which this disease has been sexualized (although, that got me into some spirited debates on this blog and I'm convinced that some people will just NEVER get that through their heads) and most importantly, we can dig into environmental issues.  For now, we must speak with our wallets.  So the very first thing you must do with your wallet is order the DVD.  Here.  Have your friends order a copy.  Throw a viewing party.

It may cause a spirited debate which is what happened somewhere out ----> There.... as in on the internet.  I found myself in a debate (ok, maybe it was an argument) because of a comment I made defending something.  Sandy jumped into that .... alright-ALRIGHT....perhaps it WAS a FIGHT ......  and it was clear that I was the winner by virtue of the fact that Sandy's comments were in support of my points.  Sandy is a member of the support group of metastatic patients that is featured throughout the film.  I could care LESS about anything or anyone else.  Once I saw her words, I jumped into Fearless Friend mode.

I'm very honored that Sandy so graciously agreed to share some of her feelings about the importance of this movie.  Here is what she had to say:

"It is a strange thing.  The only stage of breast cancer that causes people to die is Stage IV, yet few people even know what Stage IV is. Those of us with metastatic disease (Stage IV) are often swept under the rug. That seems strange because 30% of women diagnosed with earlier stages of breast cancer will go on to be diagnosed Stage IV later on.  So why the disconnect? The only thing I can think of is this: When you're trying to raise money and help people feel hope, we're kind of downers and we clash badly with Gloria Gaynor's "I Will Survive" which is what always seems to be playing at the Komen races. It's hard to wrap one's head around this, but our small Stage IV support group lost 10 members to this disease the year the film was made. We're like the Ford Pinto of the pink ribbon movement: Bad P.R. (Wasn't it the Pinto that would randomly explode into flames?) So this film for us- just knowing it was being made- it felt like a relief that someone was finally going to turn over the stones and tell the truth- a truth that many of us have known on a visceral level for a long time.  They asked questions that no one ever asked, and they passed the microphone down to the trenches and listened to our voice. It was an honor and a privilege to be part of it."

And it is my honor and privilege to have Sandy's words to share here.

There was an excellent story in the Miami Herald about a woman in need of treatment who lives on the West Bank in Gaza City.  She summed things up pretty nicely:

"Everyone is welcome.  We don't care about race, religion or ethnicity.  We need to fight breast cancer together......"

Learn from the lessons in Pink Ribbons Inc.  Use those lessons to bring this community together.  Aren't we all Racing Toward The Same Goal?

Let's all stop with the semantics and the politics and the religion and let's get back to basics.  Let's remember breast cancer is NOT a choice.  How we go about addressing this pandemic IS a choice.  It's our choice.  Together we are stronger.

The HELL with raising awareness.  How about simply telling the TRUTH..... wouldn't that be a novel beginning.  No WHERE have I seen the truth more accurately portrayed than in Pink Ribbons Inc.

Now, for the important business..... can anyone tell me who should be the recipient of the copy I received from the good folks at First Run Features.  And if you can't comment because blogger seems to have "issues" at times which IS PISSING ME OFF......  you can shoot me an email.  Put "Pink Ribbons Inc" in the subject line.

Wednesday, September 19, 2012


Almost one year ago, we had a discussion on twitter about changing the face of Pinktober. The entire tweet chat is here. It's easy to read.  We are weeks away and the insanity has begun.  We had a tremendous opportunity to capitalize on those missteps that created more negative publicity toward Komen, yet, we did nothing.  Correction.  We did plenty.  Me included.  We did a whole lotta talking and not a whole lotta acting.

Yesterday, I shared how Staples employees were employing some strong-arm tactics with a $2.00 pen.  Last night, I had a My Cousin Vinny moment.  For those who aren't big on movies, I apologize but for those who have seen the movie, "This is IT, the case-cracker!"  I know what's happening with these Staples folks, they must have been given a bit of training by WWE.  You know.  The wrestlers.  The crazy guys.  What my son once referred to as a soap opera for guys.

While we have been very noisy, Komen has been very quietly doing things behind the scenes.  Very savvy.  Sell those pens.  And get a new corporate sponsor.  WWE has now partnered with Susan G Komen For The Cure.  The burly wrestler is donning a shirt that says, "Rise Above Cancer."  The only ones who are rising above cancer are those whose feet no longer touch the earth.  Like Susan Komen.

The press release from WWE is here.  If you think this isn't going to reposition Komen in a HUGE way, you are sadly mistaken.  This is a major coup.  To be fair to the WWE, they are donating 100% of the profit from all merchandise and they guarantee the profit will be a MINIMUM of 30% of the retail price of any given item.  They are doing it right.  Full transparency.  And.Every.Damn.Dime.Is.Going.To.Texas.

If you read the press release, you will see that WWE boasts five million FEMALE viewers, "more than the top rated shows on women's television networks."  They go on to say they will be sharing all of their global resources including broadcasts, live events and social media to encourage fans to get involved in Race for the Cure events in their communities.  Komen is the "world's largest non profit funder of breast cancer research and community outreach programs."  When those wrestlers speak, their fans listen.  They are being sold "the cure" and "research" and that is what they will believe.  We need a new plan.  Wouldn't you agree?  The game just changed and this is how we are presently positioned.

                                  Komen: One Gazillion                       Rebels:  Zero

Doesn't look so great, does it?  So where do we go from here?  I don't know. When we should have been opening dialogue with Komen as they were on the brink of imploding, we were busy doing what?  And yes, for the record, pun intended.  We were doing lots of talking with no clear plan of action.  With no fuzzy plan of action.  With no action AT ALL even on the radar.  Shame on us.

My friend, Lori who blogs at Regrounding penned a petition to Nancy Brinker.  For starters, I might suggest that everyone sign the petition.  And, if you have not yet signed the NBCC petition, I'm asking you do that, too.  While I'm on the sign and join bandwagon, if you don't belong to Army of Women database, enroll now.  You want to be part of a changing landscape.... those are a few of the ways "HOW" to do it.  Yep.  That is cryptic.... but not for much longer.....

Lastly, I want to share a few "tweets" from a man who was selfless and wise and witty and admired and loved and is MISSED by many.  Dave Hodgson participated in that October chat.  He was ready to put his expertise in marketing to help us find a way to reshape the ribbon.  From his perspective as a marketing genius, the ribbon is here and we should USE it. "What do you want people to know and do?"  Dave's take..... it would be pointless to ditch the ribbon until a new messaging source was established.  Dave died of metastatic melanoma on December 31st.  He had plans in motion.  He was asking all the right questions. (The last set of tweets are not in the tweet box.. no clue what happened to the formatting and I'm too challenged to try to fix it... Easy enough to figure out.)




I believe that Dave would have helped us make a difference. Big shoes to fill. Any ideas?

Just three more tweets...... Not from Dave...

This one is both sobering and upsetting at the same time. If they are shopping, we must make sure they are shopping responsibly.
Rachel weighed in with her brilliant observation. She always shared the wisest thoughts.
This is from Nancy. She has been supporting the breast cancer community since the beginning of #bcsm. She definitely wins the prize for the absolute best comment of the entire chat.....