Friday, May 31, 2013


Sunday, June 2.

National Cancer Survivors Day.

There's even an organization that's behind this ......  event, holiday, commemoration, celebration .... I'm not sure what to call it....

This is the 26th annual observation of a day to honor and celebrate cancer survivors.  There is a page on the site that acknowledges the challenges of life after a cancer diagnosis.

It doesn't matter what language we use.  Some words get one group in an uproar while another group is comforted.  By the same word.  I think it's important to really grasp the concept that we are all different and each one of us has a right to "do cancer" in a way that works best for us.

With my mom's permission, I'm sharing a photo ....

She had just begun chemo.  My guess?  Two rounds in.  November, 1987.  With a scarf covering her head.  The line had just been drawn in the sand.

My mom...... and my dad......

Three times.  Not a charm.  Breast cancer, followed by renal cancer, and then 20 years later, cancer in the other breast.....

And five plus years after that  ......  still a "survivor" except she's back in active treatment.

She is at the top of the list of people I will honor and celebrate on Sunday.

Who am I kidding?  I honor and celebrate her every single day.

Today is the last day of National Cancer Research Month.  If this doesn't drive the point home regarding the need for more research, better research, meaningful research, I don't know what will.

Thursday, May 30, 2013



Nike.....  Big mistake.  Huge.

I'm not an active member of LIVESTRONG.  There is only one reason for that...... time.

There are only 24 hours in a day.  I need to sleep, I need to eat, I need to maintain some semblance of household order.  I have obligations, for lack of a far more acceptable word, to my loved ones.  I try to pursue my passions, I overextend myself.

At the AACR meeting, I confessed that I had a public life, a private life and a secret life.  While that all sounds very mysterious or exotic, I was merely trying to differentiate between 3D and 2D worlds.  This: the blog, twitter, social media, is my secret life.  It's not because I choose to keep it a secret, it just because people either get it.  Or not.  And if not, I'd rather not waste my energy trying to explain the power of this energy.

It's not easy juggling three lives with a chemobrain.  It can be exhausting and it can certainly get confusing.  Which brings me back to LIVESTRONG.

Make absolutely no mistake about it.  LIVESTRONG is not Lance Armstrong.  Although the organization will most likely always be linked with him in our minds, it's so extraordinarily far beyond the vision of one man.

I'm not expressing an opinion on what Lance did.  It's not up to me to sit in judgement of another human being for his transgressions.  He did what he did.  He will undoubtedly deal with the fallout for the rest of his life.

Here's the thing.  That foundation exists for the benefit of cancer patients.  All cancers.  All patients.  Nike has been a foundation partner since its inception.  Their support has provided over $100 million since 2004 thus enabling LIVESTRONG to provide direct services to help those of us who are living with a cancer diagnosis.  In treatment, beyond treatment, seeking treatment.... the list is all encompassing and Nike's announcement that they are severing ties to the foundation is a really lousy thing to do to the 14 million Americans that are faced with the challenges that accompany a life touched by cancer.

LIVESTRONG was gracious in its written announcement.  Nike, however, sucks.

The sticking point?  The one thing Nike will not tolerate?


OK, got it.

Wait.... Nike already pulled all of Lance's endorsements.  Lance cheated.  By his own admission.

Now they are potentially harming a substantial number of people that are helped every single day by LIVESTRONG programs.  Those people didn't cheat.  If anything, they've been cheated by virtue of a disease that steals so much from too many.

Riddle me this, Nike.  How did Michael Vick manage to find his way back into your good graces after spending nearly two years in jail?  And killing some dogs.

And cheating?

Let's talk about cheating......

How is Tiger Woods the recipient of a NEW $100 million - 5 year endorsement deal??  That kind of cheating doesn't count?? I guess not.  I don't know if I'm more bothered by the fact that Nike was instrumental in the "rehabilitation" of Tiger's image or by this recent Tiger tag line that has raised more than a few eyebrows.

That's pretty insulting on many levels but I'll leave the feminism and the "I have a problem with a lying, cheating husband" out of the whole damn thing.  In my world, cheaters are cheaters are cheaters and Nike won't tolerate cheaters. Sometimes.

And again, I say.  Nike.  You SUCK.  Your actions aren't against a cheater.  You turned your back on millions of cancer patients with one big swoosh ......

And trust me, winning does NOT take care of EVERYTHING.  And not playing fair is akin to cheating, isn't it?  Nike, you're not playing fairly.  Not only have your actions cheated many, your foul play makes you the biggest and most hypocritical cheater of them all......

On behalf of cancer patients everywhere, I'm gonna just do it one more time:  You SUCK.

Fair warning:  Don't even think about showing up in October with some pink ribbon crap.  I'm pretty sure your target audience will be a bit less tolerant of your loose interpretation of what it means to be a cheater.  Trust me.  You know cheaters and I know women.

Do me a favor..... if you happened upon this blog and you are a Lance hater, don't leave a comment here.  This is not a discussion about Lance or Tiger or Vick..... it's about cancer patients and how this news will directly impact so many of them.  Mentions of individuals are solely to punctuate a point.  This is about Nike's stance against an organization that is relied upon by more people than we can possibly imagine.  Unless you are one of the people whose life might be directly affected by this ill advised move that Nike has made, kindly keep your comments to yourself......  

Wednesday, May 29, 2013


THIS POST IS ONE THAT I WROTE IN JANUARY 2012.  I'm doing an instant replay for anyone who may have missed it.  It's a year plus later... and oh how things have changed.. but this is still relevant.  In fact, it's particularly relevant....

It's poignant, too..... as I read my own words, particularly about distant recurrence and my mom and risk reducing and knowing what happened exactly one year after I wrote the following:


It is most assuredly not a yellow brick road but it IS a path... a path with twists and turns and sometimes, unexpected curves and road blocks.  Life after a cancer diagnosis.  And I mean literally, the precise SECOND those words suck the oxygen out of a room.

If I'm going into metaphor mania, cancer would be the wicked witch that is snuffed out by a falling house.  The house would be the treatments we choose in our quest to live in the land of NED.  No evidence of disease.  I will leave it to you to figure out, in your story, who fills the shoes of Glinda, Tin Man, Lion, Scarecrow, Wizard, The Lollipop Kids.  The Other Munchkins. The Flying Monkeys.  A diagnosis of breast cancer and you are on that path.  Like it or not.  And suddenly, the Scarecrow is at a crossroads explaining how some people go this way and others go that way.  Every cancer is different and every decision along the way is highly personal.

Two characters remain standard for each of us.  We are Dorothy.  And that OTHER wicked witch?  The one who comes from the west or the east or whicheverthehelldirection... I suck at details like that... but THAT witch?  Like the story goes, she's worse than her sister.  She's the one we are running from, the one who has put such fear into our hearts.  We are constantly looking over our shoulders hoping we don't end up in that room with the God Awful Hourglass.  Filled with some degree of fear, we approach each crossroad hoping she isn't lurking and ready to pounce.

Shifting from the scary movie and into reality, this is Life Post Cancer for many of us.  For me, I have about six different doctors that I see at various time during the year.  The frequency depends upon the doctor.  The oncology follow ups are the ones that create the most distress.  Now at six month intervals, I get a bit tense the day before an appointment.  I get a bit fearful when I pull into the parking lot.  It's where I was told, it's where I had my first biopsies, it's where I sat in a chemo chair.  It's one of the less pleasant places in Oz.

OK... This is one of THOSE posts.  Hold tight while I reel my brain back in.....There is a reason for the title.  And there is a point in this metaphoric maze.  When I was diagnosed, I was faced with choices.  There has been lots of chatter about patient awareness and asking the right questions and gathering information before making what might be a life altering decision.  I'm connecting the dots backwards as Steve Jobs talked about in that now super famous Stanford commencement address.

There is an element of waiting in the treatment process and I remember the very first doctor on my cancer team dispensing pearls of wisdom.  The important ones stuck with me.  "Waiting is the hardest part.  Try to remember that."  It took three months, three doctors, three tests followed by three invasive procedures to find the sneaky cancer.  Until THREE days before I was told, I did NOT believe I was walking around with cancer.  In fact, I was strolling through the piazza's of Rome and then meandering through the alleys and waters of Venice with cancer growing in my left breast.

During those three months before setting foot on the runaway train, I pored over every word in the first two pathology reports and I used the internet very responsibly.  (That DOES sound like a typical wise crack, but I was cautious about where I searched for my info...... )  I had a good foundation and a decent understanding of things by the time I was blindsided with the words "invasive lobular carcinoma."  Now I was on that runaway train, or to stay in metaphoric Oz mode, I was trapped in the house as it got sucked into the vortex before landing on that damn witch.  I realize that foundation helped me to understand things that I just presume every cancer patient would already know.  Backward dot connecting?  I did NOT know this until I studied for my dissertation. Studying and learning.

There is a difference between a recurrence and an entirely new breast cancer.  That is the whole point to this story and why it always takes five (okay wise-ass, yes it's EIGHT) paragraphs to get to the point?  It's who I am.... It's what I do..... I ramble.... It's the chemobrain in my head.  The shortest distance between two points is a straight line. Tra La... got it. But my brain zigs and zags.  And I let it.

Two different situations.  Recurrent breast cancer and a entirely new breast cancer.  You are MONITORED for recurrent disease and you are SCREENED for new disease.  Part of the reason I opted for a bilateral mastectomy was not the fear of recurrence.  Fear of recurrence is something many of us learn to weave into the tapestry of our lives.  It's there.  But it's just a small imperfection that adds to the unique quality of our tapestries.  Recurrence will happen in some of us.  It may be local (still confined to the breast) or it may be distant (it spread).  It's been said the only thing worse than hearing "You have cancer," is hearing, "The cancer is back."  Recurrence, while statistically less likely in my particular case, Can Still Happen.  I can't control it so I refuse to obsess over it or allow it to command any more of my life than what cancer has already stolen.

My choice was made to minimize the chance of developing a second breast cancer some years down the road.  I began calculating my risk factors.  What is the likelihood I might develop a SECOND breast cancer?  And I see I am at risk because I am a woman, the risk increases as I get older, I am at a higher risk because of my mom's diagnosis, MY OWN cancer added a risk factor, we were both pre-menopausal and under age 50 to continue piling it on.....There just seemed to be too many things in the "These Odds Suck" column.  Add in the sketchy BRCA results and the crystal ball to see there would be two additional breast cancer diagnoses in immediate family members shortly after mine...

Did I really want to have to deal with this twenty years down the road which seemed to be the statistical marker for that second diagnosis? Bearing in mind that medical knowledge has the power to explode exponentially, I am going by the information that was available to me in 2006.  I did just poke around a bit and that twenty year mark is still, in 2012 being bantered about.  I'm not looking to sensationalize anything.  Not going to quote a statistic (not my gig... statistics and soundbites) that I can't fully back with proper peer reviewed publications.  I am just sharing something.

I seemed to understand in 2006 that I wasn't gaining a statistical edge with regard to the possibility of a recurrence.  It was all about removing the breast tissue to gain a statistical edge over a second breast cancer.  It happened to my mom. Twenty years later.  Exactly twenty years later.  Not a recurrence of 1987.  A completely new breast cancer.  I made the right choice.  For.ME.  The right choice for me.  I got courage from the Lion, love from the Tin Man and knowledge from the Scarecrow.  And validation from the pathology report of the rest of the breast tissue which was riddled with areas of DCIS, LCIS and would have resulted in many more biopsies as these were picked up on future imaging.

What Now?  I want those Ruby Red Slippers.  And I want them immediately, damn it!  The elusive slippers.  In the quest for those slippers, that wicked witch just melted away.  In my metaphorically maniacal musing, Glinda is in a lab somewhere getting ready to produce slippers suitable for all of us.  And one day we will don the slippers that are the best fit for our own circumstances, we will close our eyes and know that Glinda is whispering in our ears.  We are protected now.  Those slippers will protect us.... and I think I've accounted for all of us.....

Your cancer can't recur.  And your recurrent cancer will NOT progress any further, you will not die of this disease.  And as for you, no chance of ever developing breast cancer to begin with..... 

Step aside, Wizard, you are standing in the way of progress.  The lady has some work to do.

Friday, May 24, 2013


This is a little lesson in the way construction companies operate.  When your role is a subcontractor, the electrician, the plumber, the carpenter, you bid on work.  Some of it you get, some of it you don't and mostly, you hope that the ten jobs you were awarded..... oh.... eight or nine months ago don't all "break" at the same time.

Three months out, it looks like the stars are aligned and everything is going to happen in a rather fluid fashion. Communication is ongoing and it's still all good.  Job A will be on June1,  Job B will begin on June 3, Job C estimate is June 10th.  On June 12, none of the jobs has commenced and by June 15th, all ten of them require manpower the next day.

It's a spin off of Murphy's Law.  Having work lined up is a good thing.  The timing?  A whole other story.  Juggle the crew, split shifts, see who can wait a day or two and hope it all doesn't come crashing down.

I'm a one woman show.  With chemobrain.  And passion.  And an awful lot to do.  Not entirely sure how it happened but it did.  Have you noticed haphazard posts and erratic timing?  Me too.  Are you waiting for an email reply or did I promise I'd help with something?  I swear, I'm doing my best to make sure nothing falls between the cracks.

I was in the midst of a project that was a bit time consuming, even more challenging and with a deadline that was misunderstood, miscommunicated or likely a combination of both.  Technically, I'm a day early.  Or, I'm eight days late. The project is done but it's swallowed me whole and spit me out.

Two days ago, I cleared up about 200 email messages.  Last night, there were 200 new messages.  Waiting.  It's all good. Today, I will get everything organized and I do mean everything.  My tax bill was paid online.  It was due by midnight, the payment went through at 2AM, the letter advising me to send the $97.00 penalty is sitting in a pile.  The $30.00 parking ticket?  Now $60.00.  Car inspection?  Six days left.  In my world, that's eternity.  I wish I were kidding.

Today, however I want to extend my thanks to everyone in the twitterverse for the beautiful messages that were left for me about the guest post I wrote for the new #BCSM blog.  The community has come to mean so much to me and from that community, I've developed many very strong relationships.  I cherish each and every one of them.  Thank you for the notes you left, thank you for reading and thank you Jody, Alicia and Dr. Attai for bringing us together.

Today, I also want to say thank you to the gang at the Dr. Susan Love Research Foundation.  They hosted an event at a lovely venue in NYC yesterday.  It was a small gathering and it was absolutely wonderful to see Dr. Love back to her-no nonsense-spot on-explain the most complex science using visuals that everyone can understand--self.  No one commands a room the way she does.  And no one is better at engaging and entertaining an audience than the executive director of the foundation, the fabulous Naz Sykes.

It was an honor to be seated beside Dr. Love to share my own story and explain WHY I support the the Foundation.  If you haven't joined the Health of Women Study yet, now would be a good time.  We can't keep demanding other people to answer our questions if we aren't prepared to provide them some information to work with.  Make sense?  Of COURSE it does.

What a difference a year makes......  Just about a year ago, Susan Love was learning that she would join the other side... she was becoming one of us.  Sadly.  She was setting foot on the runaway train.  Yesterday, as she spoke, I couldn't help but smile (not haha, but in solidarity) every time I heard the word "chemobrain" cross her lips.

Gosh.... in less than two weeks, I can say I've got the body of Angelina Jolie and the brain of Susan Love.


Wednesday, May 22, 2013


I've been on a Debunk The Headlines campaign.  The misleading headlines are quite irritating and generally lead to tons of hype.  And, on occasion as we may have noticed over the past several days, borderline hysteria.

I've had this article tweeted to me a number of times from a number of different places and I haven't had the wherewithal to sit and collect my thoughts.  Fortunately, with friends like the oh so brilliant Idelle Davidson, I can let HER collect my thoughts.

This was the headline and it was one that was upsetting.  Why?  We are clawing our way for recognition - "It's real."  "I'm struggling." "HELP me, PLEASE!" and in an instant..... De-Validation.

Enter MNT... Medical News Today.....Simply adding "May Be" before "Improved" and it's all good.  Maybe's and Wanna Bees and for that matter, Queen Bees, too?  Steer Clear!

I'm sure she needs no introduction, but just in case....Idelle is co-author of Your Brain After Chemo.  I kid you not when I say I have what might be one of the first 10 copies that rolled off the press.  With MAJOR props to Amazon for keeping such meticulous records, I know I had this book delivered the same month it was released.

Idelle stays on top of everything and before I had the chance to discuss that nonsensical headline with her, I see a blogpost.  Good thing because I can tell you there are so many distractions surrounding me at the moment, there is NO WAY a coherent, cohesive, compelling post was flying off of my fingers.

I've referred to myself as Lou Costello several times and Idelle is my Bud....  So... Hey ABBBOTTTT.... Take it away....  Reprinted directed from Your Brain After Chemo Blog ......

If you've been through cancer treatment and you are struggling with memory, concentration, multitasking and/or word retrieval issues, you may be hoping for that golden portal, that doorway back to your pre-cancer self. 

If only, if only... (Idelle's words, my emphasis....simply because I want to break into song: "If I Only Had A Brain!")

One area researchers are investigating to whisk you there is cognitive (re)training with specially designed software. How great would it be if rehabilitation were just a handful of hours and some computer mouse clicks away? Could it possibly be so easy as playing timed word games, puzzles, and a variation on Whac-A-Mole?

That's the hope.  In recent years a few studies have looked into it.  Two, using software developed by Posit Science and Lumos Labs (Lumosity), have focused on chemo brain in people who have had breast cancer. Other studies have looked at cognitive issues more broadly. Software by Cogmed has has been used to study brain injuries, memory issues in children with cancer, concentration issues related to ADHD, and more.  Programs by Dakim have centered on age-related memory decline.  Cognifit software has supported memory research in students with dyslexia and in patients with multiple sclerosis, and in age-related decline. 

Have I mentioned them all?  Are there more science-based programs out there? Let me know if I've missed any.

In the meantime, here's a summary of the Posit Science and Lumos Labs studies.

Between 2009 and 2011, 82 women participated in a study that compared results of classroom memory exercises with computer software exercises. The results were published last October in the journal Breast Cancer Research and Treatment (lead author: Diane Von Ah, PhD, RN of Indiana University). Researchers randomly assigned the women to one of three groups: 1) classroom-type instruction on how to remember lists of words, sequences and text; or 2) speed of information processing training (how quickly you think things through) with Posit Science software (InSight program); or 3) a wait-list control group.  All the women had gone through surgery and chemotherapy and on average had completed treatment 5 1/2 years earlier.

Those in the training groups participated in ten one-hour training sessions over a period of 6 to 8 weeks.

Both training groups improved in processing speed and verbal memory based on neuropsychological assessments and patient questionnaires but according to Dr. Von Ah as quoted in Medscape, the software group outcome “...may have ‘broader’ benefits.”

Forty-one women (21 active and 20 wait listed as the control group) participated. Each had undergone surgery and chemotherapy (may also have had radiation and/or hormonal therapies) to treat breast cancer. On average, they completed treatment 6 years prior. Results appeared just this week in the journal Clinical Breast Cancer (lead author: Shelli Kesler, PhD, director of the Neuropsychology and Neuroimaging Lab, Stanford University).

The researchers designed this particular program to test for improvement in executive functioning, a term referring to working memory, decision making, multitasking, planning and attention. The women trained using the software on their home computers over the course of 12 weeks. Exercises included navigating through a rotating maze, recalling the location of coins and other memory/puzzle games.

At the end of that time (researchers administered standardized cognitive tests prior to beginning the program and then again after completing it), the women who played the computer games showed significant improvements compared to the control group in processing speed, word finding, and verbal memory.

Both studies though lacked long-term follow up, so we don't know if the benefits held over time.  Also, it’s not clear whether the most important question of all has been answered: Can successful cognitive training transfer to real world responsibilities or do you just get better at the games themselves? At least in the Kesler study, the participants reported they could function better in how they planned and accomplished goals and kept track of tasks.

Drs. Kesler and Von Ah say that more research is needed but it does appear from other studies, that computer-based cognitive training can slow deterioration in cases of Alzheimer's disease and mild cognitive impairment.

Have you used any of these programs?  If so, which ones?  Did they help? I’d really like to know. I’ll bet others would too. 

(Me again....  I was in a study using CogMed software mentioned by Idelle.  There was a followup evaluation which had me walking out of the offices of the research team with my brain DRIPPING from my ears.  Results not published yet.  I'll be sure to share the study and my own results as soon as they are available.)

Tuesday, May 21, 2013


This is a rerun.  It's from December 2011 when, oh, maybe five people were reading this blog.  Three of those were likely family members.  Time to lighten up a bit... Instant Replay....

Originally titled:


This information was based upon a study done on veterans of the war in Iraq.  Since we are constantly using military metaphors to describe the disease that is cancer, I'm okay with making a leap to see if there is anything in this study that might help ME.

The study was done in part to address the treatment of post traumatic stress disorder in veterans.  It's well established in the mental health community that some (many? most? all?) cancer patients and survivors are also afflicted with PTSD.

Apparently, I found another piece to add to the puzzle of things I'm going to do.  I don't have a Bucket List.  I am assembling an "I'll Be A Lab Rat" list.

First, let's clarify something.  A "Lab Rat" bears absolutely no relation to a "Hood Rat" who, by definition according to Urban Dictionary is "a girl that dresses slutty and hangs out with and follows around a bunch of older guys."  And even if they are related by virtue of the fact that both are well, ummm, RATS, first of all, my clothes are too expensive to be slutty and I don't follow around any older guys.  I prefer being the followee and I prefer it if the guys are younger. Oh, and I'm too OLD to be a girl.  I have to call it like I see it.  Statute of limitations on utilization of the word "girl" has long since expired when it comes to me.

OK.  We are all in agreement?  I'm volunteering my services as a Lab Rat and in NO WAY shall that be construed in any manner to an admission I might be A Hood Rat.  Can I get that in writing?

Chemobrain being so difficult to unravel seems to have established roots in every, any and all parts of The Breast Cancer Experience.  Recapping some of what I learned:  it's the cancer itself, it's at least two of the drugs one of which may have actually crossed the blood brain barrier and done physiological damage, it's my age, it's the estrogen suppressant, it's anxiety, it's lack of sleep, it's the grassy knoll in Dallas, it's Occupy Wall Street.  Have I forgotten anything?  As some may well understand, much is very easily forgotten.  Oh, yes!  Particularly pertinent to this nugget of info, it's PTSD, too.

Without another sidebar, or going off on yet one more tangent or taking the long road to make a short point, this is the skinny on the study:

They completed a history and physical exam as well as a clinical interview by a neuropsychologist, psychometric testing, symptom and quality of life questionnaires, and baseline SPECT (Single-photon emission computed tomography) brain blood flow imaging prior to treatment. The veterans then underwent 40 treatments of low-dose hyperbaric oxygen therapy during 60-minute sessions over a 30-day period. They were retested within a week after treatment. 
Post-treatment testing revealed significant improvements in symptoms, abnormal physical exam findings, cognitive testing, quality of life measurements, and SPECT scans. Results showed improvement in 92% of vets experiencing short-term memory problems, in 87% of those complaining of headache, in 93% of those with cognitive deficits, in 75% with sleep disruption, and in 93% with depression. They also saw improvements in irritability, mood swings, impulsivity, balance, motor function, IQ, and blood flow in the brain, as well as a reduction in PTSD symptoms.

Well hallefriggenlullia............I can add one more thing to that ever growing bag of tricks-things I simply MUST try!!

Monday, May 20, 2013


In a word, a miracle.

This story has nothing to do with cancer, pink ribbons, me being "pissed off" .....  scanxiety, chemobrain, headlines (mmmmm, maybe a headline), skewed statistics, words like "chronic" being used to describe diseases that are deadly.

It's about a miracle.  And a happy ending.  With a headline ......

It started with an email.  My son was reading an email to me a couple of days ago.  It was sent to him to let him know what was going on with a very good friend, someone he has known for a very long time. The email was addressed to many people so it had a very breezy tone.  His friend was in the hospital, doing just fine as reported by her sister.

"Sounds like no big deal from the email, right?"  I agreed.  He went to the hospital to visit her and it very quickly turned into a Holy SHIT moment as he was told what happened to his friend, Meredith.  Mimi.  When he repeated it to me, I was completely horrified.

The rest of the details emerged when the story was in yesterday's NY Daily News.  I need a Feel Good moment and this wins.  Hands Down.

NFL staffer pronounced dead miraculously revived multiple times before Mother’s Day

Meredith ‘Mimi’ MacKinnon, a special events planner for the NFL, got a blood clot traveling from Indianapolis to New York. Eventually, it lodged in her lung, resulting in stress on her heart and sending her into cardiac arrest. She was twice revived by EMTs and doctors, and later had her body cooled below 90 degrees to save her from brain swelling.

Read more:

There's only one way to describe this against-all-odds medical miracle — a Hail Mimi.

NFL special events planner Meredith MacKinnon awoke last weekend in her East Village apartment with a sharp pain in her leg. She was soon unconscious — without a pulse and unable to breathe on her own.

She stayed that way for 45 minutes as EMTs and doctors performed CPR, twice bringing her back to life. The 31-year-old — known to friends and family as Mimi — was then whisked into surgery before doctors placed her in a deep freeze.

In a finish as dramatic as a Manning-to-Tyree Super Bowl toss, MacKinnon awoke the next evening showing no signs of her death-cheating ordeal.  “Pretty crazy,” she said last week from her room at Beth Israel Medical Center. “I’m a lifeguard. I took CPR. I know that if you’re out for that long, bad things can happen.”

Dr. Ritu Sarin, one of the emergency-room doctors who greeted the ambulance carrying MacKinnon, was stunned to find herself sharing a brownie with Mimi just six days later.  “You have a patient actively dying in front of you,” said Sarin. “She really was. Then she wakes up, and is neurologically intact. This is the kind of case you only see once or twice in your career as an ER doctor. It’s amazing to see her up and walking and talking and doing so good.”

The near-tragedy began May 9, when frequent flier MacKinnon boarded a flight back to the city from Indianapolis. The plane was delayed, and she slept all the way home.  MacKinnon, a seven-year NFL employee, felt lingering pain in her leg all day May 10. She woke up on May 11, the day before Mother’s Day, feeling horrible.

“She was pale and sweating,” recalled sister Christie, 34, who shares an apartment with Mimi. “I called my mom and gave Mimi some juice. And then she passed out. I hung up on Mom and called 911.”

A blood clot from MacKinnon’s leg, likely caused by her air travel, had lodged in her lung. The resulting stress on her heart as Mimi fought for breath sent her into cardiac arrest. “Your heart is pumping, pumping against the clot,” explained Sarin. “It’s like a clog in a drain.”

MacKinnon first went into cardiac arrest inside the ambulance while headed to Beth Israel. She was revived at the hospital — only to go into arrest again.  Christie, who rode in the ambulance with her sister, said doctors provided her with a grim play-by-play. “Because I was the only person there, they were telling me how bad things were,” she recalled. “They told me her heart stopped. They were being very blunt.”

Doctors restored the pulse and put MacKinnon on a ventilator as they treated her with a clot-busting drug. Surgeons then implanted an IVC filter to block any other clots from reaching the heart or lungs.

The next step was a Lambeau Leap of sorts: MacKinnon’s legs and chest were wrapped in special cooling pads used to induce hypothermia. Her body temperature, while not quite at frozen tundra level, was dropped below 90 degrees to prevent any brain swelling.
Then came the hardest part for the MacKinnon family — waiting.

A third sister joined Christie at the hospital, while parents Sue and Peter came in from their Glen Cove, L.I., home. They kept vigil as Mimi remained unconscious through Saturday and into Mother’s Day.  “There was a lot of crying on Saturday,” said mom Sue. And, as it turned out, a lot of laughing on Sunday.

Doctors started bringing Mimi’s body temperature back to normal Sunday evening, a process that can last up to five hours.  Christie and her mom went out to dinner — and Mimi awoke after just 45 minutes. They bolted back to Mimi’s room, unsure of what awaited.

“Then she started cracking jokes,” recalled Christie. “It was more her delivery than the jokes that had everybody laughing. She was very deadpan.”

By the end of the week, McKinnon was walking on her own through the hospital halls. NFL Commissioner Roger Goodell sent a bouquet of flowers, and Carolina Panthers owner Jerry Richardson delivered a message of support.

The sad Mother’s Day turned into a joyous celebration, although MacKinnon said she faces more work on the road to recovery. “I’m good — not fine, but better,” she said. “The whole thing has been a little wild.”

Friday, May 17, 2013


I "met" Heidi on twitter.  I know it had to be at least a year ago.  Heidi is a hockey fan.  So am I.  Heidi was also part of the growing community of breast cancer patients, a community that seems to have exploded over the past several months.  That's not indicative of more breast cancer, it's a testament to the power of social media to bring a community together.

Yet, the hockey tweets caught my eye.  Not too many female hockey fans out there (or, if there are, they don't talk about it).  That's how we first began chatting.  Now, Heidi is a friend.  From what I see, she's running around like a chicken without a head, too.  We are kindred spirits.  Except, she's tall and blonde and I'm short and brunette (if I make it to the salon on time).  She met Dr. Attai of #BCSM fame.  She had an under 40 diagnosis, mine was under 50.  She has FOUR kids, I can't deal with three!

Pageantry aside, Who is Heidi, What is she all about and Why should you help her.... Simple.  She's awesome.

And now, Here's Heidi:  

I am one of those women under 40 diagnosed with breast cancer.  In our unique sisterhood, as you know, our cancer tends to be more aggressive and has lower survival rates than in older women.  Not only was I young, but I also happened to be pregnant at the time of my diagnosis. With 3 young daughters and a husband going to school full-time, this news was an absolute shock.  My journey through chemotherapy while pregnant was simultaneously terrifying, awareness-raising, faith affirming, empowering and enlightening.  The dedication of researchers, clinicians, friends and family kept me alive and helped me to deliver a healthy baby boy.  The experience so profoundly affected me and those around me, reaching out to help others with cancer has become a passion.  As a keynote speaker, author and proud mommy of 4 young cancer advocates, I'm honored to share my story with anyone who might need to see hope during adversity.

It also set me on the path to win an award from the Pink Power Mom program.  This award celebrates moms who have had breast cancer and are giving back to the cancer community. Kids II (, the company who created and continues to be the sole underwriter of this award, gives women a weekend event in Atlanta and a check for $5,000 to their non-profit charity! It is a refreshing glimpse into a truly compassionate company; a corporation that cares so much for moms with cancer and their famlies.   

Years after winning this award, they approached me with a simple goal: they want to find more of these mommies who make a significant change in the world.  I was offered the role of Executive Director with the purpose of helping to locate as many of these women as possible On Mother's Day, we began the search for 2013 nominees.  Finding moms across the country will help us make a network of strong advocates and resources for our sisters in the fight. 

Nominations are open for 6 weeks, and we would love to be flooded with entries from across the nation.  Please nominate ALL the ladies you know who qualify for this incredible honor - and help us celebrate them!