YOU CAN'T FIX STUPID

Happy Halloween and Thank HEAVEN for the disappearance of the pink ribbon.


Starting tomorrow, we will be directed to be aware of other things.  Things that NONE of us will ever learn are noteworthy during the month of November.  A peek at one website talks about November awareness for veterans, adoption, diabetes, alzheimers, lung, pancreatic and prostate cancer and caregivers.  That's not even a complete list. Whew.


I do want to close out this final day in October reminding everyone that there is much work to be done.  The only thing we are aware of is that October means races and pink ribbons.  These are the words of someone I "met" on twitter:

It's time to change awareness to education and ribbons to research.

This same person brought something else to my attention.  I have been trying to keep the conversation going on behalf of those with metastatic breast cancer.  She posted one of my tweets to a Facebook page:

"Metastatic breast cancer can occur ANY time after original diagnosis, EVEN if initially Stage 0, I, II or III"

The post caused "outrage" and her entries were deleted.  In addition, she was accused of spreading untruths.  Since she doesn't know I am writing this blog, I will leave her anonymous unless she consents to being "outed."


When I got the name of the Facebook page, I posted a note and then put up a second post with a link to one of the Metastatic Breast Cancer organizations.  Another blogger also added a very kindly worded post on the Facebook page with a link to her letter written to Komen about funding for research of metastatic breast cancer.


One of my posts is still on the FB page.  Any other entries with links to PROVE the accuracy of that statement have been deleted.  This "dust up" all occurred on the Facebook page of a UK Television Show called "Loose Women."  Go find them on FB.  The page is open to all.  Better yet, google it.  The first sentence in Wiki says:

It consists of a panel of four women who are brainless....

That would ordinarily make me laugh.  Except, they have an audience and their audience was so busy applauding one of the "brainless women" for having a mammogram on the air, they weren't interested in the reality of the disease called Breast Cancer.  


It bugs me when people who are IN THE POSITION to teach, to educate, to shine light on the facts choose to make believe the facts are lies.  This goes beyond doing a disservice to the women who apparently adore this bunch.  There are times when we can be helpful, there are times when we can be neither helpful nor harmful and then There Is This.


This is when harm is done.  And I can't sit back and watch false information even lead ONE woman to believe she is safe because the "brainless women" said so.  I happen to be very fond of a young mom whom I've known for more than half of her life.  She lives in London.  She has three young sons.  And she has breast cancer.  So, I sent a tweet to someone who might have some influence in the UK.  We'll see what happens.  In the meantime, in the words of one of another tweep (and as soon as I remember who said this, I will give them proper credit because I can't claim these words as mine):

You Can't Fix Stupid.

A SPECIAL VISIT

This is it.  The final weekend of October madness.  Then, life can return to normal.  The problem?  I don't think I know what "normal" means.  And, I'm not going with "The New Normal."  I'm getting cranky about certain phrases and THAT happens to be one of them.  Seems almost oxymoronic.  Can't quite get my brain to decide but I just know I've heard it so many times, it's become irritating. 

What began in July as a means of, for lack of a better description, getting out of my own way in an attempt to find my way, has turned into a way of life.  MY life.

I was born with this, "That's just not fair," thing ingrained in my personality.  And, I get it.  Life isn't fair. But some things are within our power and others are completely out of our control.  The fact that I was diagnosed with breast cancer.  Out of my control.  

I know from support groups and from lots of the reading there are women who truly believe they could have prevented the disease.  Fortunately, I am not in that group because honestly, I beat myself up about enough really REALLY stupid stuff.  If I blamed myself for my breast cancer diagnosis, I'm pretty sure I would have already hurled myself from the roof of Sloan Kettering during one of my visits over the course of the past five years.

The fact that my marriage was unraveling at warp speed over these past 15 months?  It took a bit of time, but for the first bunch of months, I DID blame myself for that.  And then, I didn't.  I did lots of introspective thinking.  Yoga helped tremendously.  Awareness.  Finding that quiet place within myself to determine what rings true to me, for me, for my life.  A great therapist helped me to keep things in perspective.  Not gonna lie, a shot of tequila or vodka was definitely part of the mix plenty of times along the way.  It wasn't all zen and psychobabble, it was fun and girlfriend power, too.  It was a good balance. Mostly. Except for that night I found myself in the bar with those Jersey Shore guys.  That was the "it's time to grow up already" awareness.


The marital situation is not something I was ever even comfortable mentioning, but we are working on "it" and whatever will happen, is going to happen.  What I have taken away from the last 15 months is that I unknowingly began to follow the advice in the commencement address delivered by Steve Jobs at Stanford.  

Your time is limited, so don't waste it living someone else's life. Don't be trapped ... living with the results of other people's thinking. Don't let the noise of others' opinions drown out your own inner voice, heart and intuition. They somehow already know what you truly want to become. 

I was trapped and I didn't even realize it.  Once I became aware I wasn't following that little voice inside me, I began to reach out in many directions.  I took what was out of my control, my breast cancer diagnosis and I made a decision to turn the single most negative chapter of my life into "something."  Somehow, I was going to make something lousy into something meaningful.  


It began with this blog and then volunteering at the hospital and becoming a part of a twitter community and attending events to help grow the Army of Women..... How?  Why now?  What made me listen to my own intuition?  Who the hell KNOWS!  It may have been a meditative yoga moment, could have been an aha therapy moment but I'm thinking it was more along the lines of one of those brilliant ideas that come from a drunken stupor.  


The thing is, I just went with "it" even if I am still not quite sure where "it" is taking me.  I caught the wave and I'm still riding that wave.  I have tentacles stretching in many directions but I'm confident my heart will lead me in the right direction.  Hopefully, my brain will cooperate!  I know I feel more fulfilled in that soulful kinda way than I think I have ever felt in my entire life. 

Next week, coincidentally, I will be meeting the young lady who wrote that piece explaining how to let go and ride the wave.  We've never spoken or skype'd.  Our communication has been via email and twitter.  She will be in NY because she had a thought and she went with it.  She inspires me and her words continue to inspire me to just "go with it." Things that are all over the place will begin to gel together and the fuzziness will begin to come into focus.  Just like they did for Terri.


Terri Wingham is one adventurous and courageous young woman.  She took the concept of knowing what is within one's power to a level I can't even imagine!!  Terri is in pursuit of her Big Hairy Audacious Dream and I can not wait to see the dream unfold.


When I grow up, IF I grow up, I want to be JUST LIKE HER.  

STICK A FORK IN ME-I'M DONE

I'm fried.  Truly.  Been a very long bunch of weeks.  Drained physically.  Drained emotionally.  Drained intellectually. And, if I don't get to this slight bit of government paperwork for which I am still responsible, I will be causing a big financial drain, too.


Joking aside, the chemobrain has wreaked havoc in my office and now that is stressing me out which makes the focus and concentration that much more difficult.  It's a vicious cycle.  I hope to get someone in here to help me get things under control.  I haven't paid a bill on time in at least two months.  To truly appreciate the magnitude of that in my life?  I was the person whose bank statements were reconciled TO THE PENNY every single month.  


I am REQUIRED to attend jury duty tomorrow because I forgot (or lost) the last notice.  I have no intention of showing up.  My next entry may be from a jail cell.  Oh wait.  They will not let me have any internet time (guessing on that one, I've never been incarcerated).  Frankly, I don't even care.  It might have been a good idea to ask ONE of these doctors in whose offices I've been for the past three weeks to write a letter.  I am so pissed off solely because this is ONE MORE THING I need to address.  (Although you wouldn't know this, I happen to have just screamed at the top of my lungs.  Sheer frustration.)


I want to be LEFT ALONE.  I want to get into my office tomorrow and POOF, like magic.... have everything brought up to date so I can truly step away from any responsibilities.  For now, this is the extent of what I can handle:  Getting out of bed, showering, eating meals and really, that's about it.  Laundry every so often.  Keeping the house tidy because I don't like a mess.


Maybe I'm just having a bad day.  Maybe I'm just crashing after a long month.  Or maybe, it's time to just throw everything aside until the police show up with handcuffs or those other guys show up with that funny jacket.  Either one of those places is more appealing than one more doctor office or for that matter, even ten minutes trying to sort out the mess in my own office.


ARRRGGGGGG....... Is it Friday night yet?


Rant over.

PROGRESS???? WHAT PROGRESS?????

Yesterday, I was delighted, thrilled, honored, flattered (pick one, pick all, add some more, too) to accept the invitation of Gayle Sulik to write an entry for her blog.  I hope you will take the time to read it.  The message is important.  We have been buying pink forever.  We have made NO PROGRESS with breast cancer.


Gayle is the author of Pink Ribbon Blues.  The title speaks for itself.  The link to the Amazon page is not a shameless ploy to suggest purchasing the book (even though I do have it on my iPad and it is an eye opener).  The Amazon link is a one click look at all of the reviews written by both critics and readers.  It's my way of saying, Attention Must Be Paid to Gayle's message.  Pink has undermined everything.  NO PROGRESS.


Go ahead.  Quote me a statistic.  Then, please go read the essay and poke around to read about Gayle and all that she has uncovered.  I don't care what statistics get bantered about, in the Fog of CB, I can spot the truth.  NO PROGRESS. What?  You need to stick your hand into the wound to double check.  Be My Guest.  And then, do me a favor?  Throw a heap of money on the table and I'll match it.  Winner take all.


As the month of October in 2011 begins to wind down, have we learned anything different than what we knew last year, five years ago (there is a point in that-just hold your horses), twenty four years ago (there IS a point in that, too-repeating, hold your horses please)?  We know we need mammographies.  Yet, as more people stand up and take notice, even the screening is being called into question.  My favorite line of the week (could be my favorite line to date) is in that article:

We are not going to screen our way to a cure.

Can I Get an AMEN to THAT????

Yesterday, the thrill is still all about Gayle's invitation.  In a poetic sort of way, it was fitting to be recognized yesterday.  You see, yesterday was another of those cancerversaries.  You know.  Those dates we mark because, yes, they ARE that significant and yes, they were that frightening.  Exactly five years ago, I sat in a very comfortable chair in lovely surroundings in that very pretty building with a needle in my arm dripping poison into my blood.  The poison that rearranged my brain.  October 25, 2006.  Hey AnneMarie, this is your semi functioning brain wishing you a slightly belated Happy Fifth Chemoversary.


It is 24 years ago TODAY, that my mom entered cancer hell with the wire insertion "procedure" for the biopsy that would be performed the next day.  She was slashed and then reslashed within weeks.  Mom's first chemotherapy was on November 16, 1987.  The needle was in her hand, the drugs were pushed (not dripped).  And two of those drugs? Methotrexate and Fluorouracil.


Hey.  I had a wire insertion procedure.  I had a surgical biopsy.  I had a mastectomy.  I had methotrexate & fluouracil.


Twenty four YEARS have passed and the only difference in the treatment is an IV pole?


You MUST be kidding me.  In the case of me and my mom, NOTHING has changed.  Like I said.  NO PROGRESS.

You can release the horses now.  They are tied to that IV pole in the corner.

Thanks to my superstar, superhero, super organized and SUPER CARETAKER dad, I have every single one of mom's records from 1987 which were of immeasurable help to OUR oncologist in 2007 when they found the new cancer in her other breast.

GOAL!!!!!!!

I had a goal when I began blogging.  I was determined to make a difference in the life of JUST one person.   When I decided I was going to include myself as "just one person," I had a winning situation before I even posted the first entry.  I think that was kinda sorta really VERY clever.  I couldn't fail.  No matter what I did, I set myself up for success.  Immediate success.


Perhaps it was that "I can't lose attitude" that propelled me forward.  I'm now all over the place.  And I mean ALL over the place.  A little reminder may be in order.  This is AM in AD.  I reside in what is aptly named for my circumstances despite the fact it is grammatically disgraceful.  Anew Direction.


When the first person wrote that very first comment (and I was sure it wasn't a setup from my mom because, after all, that is most CERTAINLY something I would have done to boost my kid's confidence), I stared at the monitor with tears in my eyes.  It was a simple sentence saying thank you because chemobrain was causing a problem for Sherry.  She simply stated she could not seem to get her brain to function.  In one short line, my real goal was achieved.  Not that clever goal, but the idea that I was able to reach just one person and that one person was real and that one person knew she was NOT alone.


Weeks later when I saw another comment from someone in the UK who thanked me for "vindicating" her, I may have cried in a semi-uncontrollable fashion.  She has been dealing with chemobrain since 2002.  It wasn't that her comment was more powerful, it was reading that she has been living with this for so many years.


I know I am onto something.  I can see the dozens of countries where this blog is being read and I'm pretty sure I don't have family on all of those continents.  I've been contacted privately by a few people who I am sure are fearful of public admission of any sort of cognitive impairment.  Careers are on the line and no better way to destroy a career than to give someone your own words on a silver platter so they may be twisted and used against you.


I got a bit sidetracked because I needed to make some noise about what is going on in the land of pink and the month of October.  Since juggling is no longer part of my repertoire, I can't balance my irritation at pinkspectation I feel is placed squarely on the shoulders of those of us with breast cancer diagnoses, the fact that I am in the midst of my own doctor follow up season and my frustration when I am trying to understand the logic (or lack thereof) behind some of this October madness.


Shout out to NYS, too.  Thanks for the summons for Jury Duty sandwiched in between two doctor appointments.  Did you lose the letter from the doctor explaining I am a CANCER patient with NO working memory so how the F*&k do you think I am a candidate to be seated on a jury?  Yes, I did need to add this sideshow to the mix.  There isn't enough already heaped in my face.  And yes, whatever small, minuscule responsibility I have in my former accounting life.... October 31?  Not Halloween in these parts.  That's a government deadline.  Oh MY!


Add an unraveled marriage into the mix and how there may be the slightest attempt in play to put it back on track..... and the fear associated with "WTF should I do about that"........and then, just for fun...... how, at MY AGE, I found myself in a trendy NYC bar one evening only to have all of the male cast members of Jersey Shore saunter in......And I think, "Hey, didn't you post an entire entry poking fun at that show?"  Chemobrain-cubed.  The only thing missing from this mix is an appearance by Gaga serenading me so I can be certain I'm on the edge of something.  Not too sure it's glory, feels more like a nervous breakdown, a train wreck or a life completely on auto pilot.


My brain may have abandoned me, but I haven't abandoned chemobrain.  It just took a bit of a back seat for a spell.  

REAL MEN JOIN ARMY OF WOMEN!

It’s been over a week since I attended the Avon Walk Pre Event in NYC.  This post is very much overdue!

Having never attended a pink walk in my entire life (or any other walk come to think of it-I tend to be the armchair person), I had no idea what I might expect. 

I know that anyone who has ever participated in these events talk about the powerful emotions they experience.  I know that when I first sat down with my friend after being newly diagnosed, she (only half jokingly) asked what having breast cancer meant to her.  “Does it mean I’m supposed to be running in some kind of a race?”  (Today, as she progressed from Stage 1 to Stage 4 in little more than a year, those words hold a completely different meaning.)

I was at the event on behalf of the Army of Women and I am thrilled to say we were able to add over 200 new members.  Many of the women were already members (after all, the AOW is the Love AVON Army of Women and this was the Avon Walk) and those who were not members graciously gave us their time as we explained exactly what they would be “joining.”

When I arrived to set up, I was overwhelmed by the sheer size of the room and the number of volunteers on behalf of Avon and the other sponsors whom I will refrain from listing  I am sure I will forget many so I will simply stick with Avon as this is their signature event.

At 2PM sharp, the doors opened for the participants and the room erupted into cheers as the first group entered to begin the registration process.  Many stopped by to share stories.  Emotions were high.  Every person had a story.  There were lots of people.  Translates to lots of stories and in my mind, that just means we need to get on a different bandwagon and start effecting some real change.

If any of you participated in an Avon Walk over the past several years, you will understand when I say that nothing touched me more than “Moo Cow Guy” and his absolute dedication to participating in every walk all over the country.  Cow Guy, whose name is Seth came to the AOW table to talk about how he heard Susan Love speak many years ago.  He was so impressed by her passion and determination, he felt he needed to do something to support her efforts.

As we were talking, I was stunned at the number of walkers who saw him in his cow gear and began shouting from across the room, “Moo Cow Guy!”  They were running to hug him and talk about “that race four years ago” or remember when “we saw you in Chicago.”  Seth is a special person in so many ways.   He fund raises for the sole purpose of providing a cheering squad at every walk.

L-R: Me, Seth, Sharon

Seth & Allison

We chatted for a time.  He told me he hoped he would have the chance to meet Dr. Love one day.  When I told him I had the honor and privilege to meet her a few weeks ago, he was full of questions.  He watched our interview clip and then he became the Cow Ambassador for the Army of Women.  He never realized he could sign up for the Army and he was so enthusiastic to be one of the few good men.   He bounced around running from one group to another.  His joy was contagious.  Silly though it may seem to some, anyone whose passion and sincerity eminates from a genuine place of love and hope is someone I want to be in my life. 

I thank Avon for providing Army of Women to recruit at the event.  I thank my fellow NY volunteers, Sharon (and her husband Elliot who joined us for a good part of the day) and Allison who not only helped recruit but also walked in the event on Saturday and Sunday.

And I thank Moo Cow Guy for being someone who truly makes me want to be a better person.  Seth: Selfless and sincere.  It doesn’t get much better than that.

THE ONION

With Proper Credit to The Onion for questioning how walking, running or cycling has ANY connection to cancer research.  Or, for that matter, researching cures for any other diseases.........

Particularly noteworthy?  The date of this article.  These guys are on to something.  From now on, The Onion is going to be my prime source for any and all news.  In fact, it may become my sole source of news.  If we paid closer attention to their reporters, we might be ten years ahead of the game.

Note:  Emphasis on a particular sentence is MINE.

6,000 Runners Fail To Discover Cure For Breast Cancer

NOVEMBER 14, 2001
ISSUE 37•41


Race For The Cure runners take off in search of a breast-cancer cure.


ATLANTA—Despite their diligent, dedicated running, the 6,000-plus participants in Sunday's 5K Race For The Cure did not find a cure for breast cancer.

Hopes were high, given the excellent weather and record turnout for the 11th annual event, but no viable cure for the disease was discovered along the 3.1-mile course.

"We were particularly hopeful of locating the cure somewhere around the two-and-a-half-mile mark," race organizer Jill Broadbent said. "At that point, the route goes right past Northside Hospital and within a block of several Emory University oncology facilities. That seemed the most promising place to perhaps spot a breast-cancer cure. Regrettably, the runners were unable to do more than momentarily glimpse in researchers' windows as they passed by."

At 10 a.m., participants gathered outside the Georgia Dome and proceeded to search through much of downtown Atlanta, including a one-mile stretch of Peachtree Road, before finishing cureless at the state capitol.

Among those disappointed by Sunday's failed attempt was Gene Worth, a Germantown, TN, real-estate agent who drove 450 miles to participate in his seventh Race For The Cure.

"I worked out for three months, focusing my full energies on preparing for this race," Worth said. "I switched to a vegan macrobiotic diet just to be in top shape. Three kilometers in, I felt great, like this was going to be the year we cured it. I did break my personal 5K record, but even that wasn't enough. Then, after I crossed the finish line, I watched other racers finish, but they came in empty-handed, as well."

Broadbent was quick to dispute characterizations of the run as a failure.

"As we like to say, today brought us one 5K run closer to the cure," Broadbent said. "We may not have cured it yet, but one of these times, we will. When faced with a setback like this, we need to pick ourselves up, dust ourselves off, and run another five kilometers."

Added Broadbent: "If even one patient went into remission as a result of thousands of people running around Atlanta, then it's all worth it."

The race was the latest disappointment in a dismal two-week stretch for athletic-based medical research. On Nov. 1 in Dallas, an estimated 3,000 cyclists were unable to isolate the portion of the human genome responsible for Alzheimer's disease. Three days later in Boston, some 200 rowers from 27 different colleges gathered on the Charles River in an unsuccessful attempt to eliminate AIDS. And a pair of Nov. 9 regattas in San Diego and Miami failed to cure cystic fibrosis and heart disease, respectively.

Runs against cancer and other diseases have been popular since 1976, when Olympic runner Bill Rodgers discovered the formula for Interferon Beta—effective in the treatment of multiple sclerosis—at the base of Nobska Point Lighthouse while running the Falmouth (MA) Road Race. Rodgers went on to win the Nobel Prize For Medicine for his discovery, despite losing the race itself to Alberto Salazar.

Credit:  The Onion
America's Finest News Source

SOMETIMES THE PICTURE IS THE STORY

It doesn't matter how beautiful the facility is or that there is a valet ready to help you out your car.

It doesn't matter that the people inside this building are some of the kindest, compassionate and skilled human beings on the planet.

What does matter?

This is the building into which I hobbled in April of 2006 to drop off films for a radiologist to review.

This is the building where two separate office biopsies were performed in May of that same year.

This is the building where I met with a breast surgeon in June of 2006 to schedule a surgical biopsy to remove atypia which was almost certainly just abnormal cells.

This is the building where I was told "You have cancer" in July.

This is the building where I met with genetics in August to discuss BRCA testing and the subsequent inconclusive results.

This is the building where I went with my mom and my dearest friend in September to meet my oncologist.

And in October of 2006, this is the building where I would begin my chemotherapy journey to make sure any rogue cells would be (hopefully) destroyed.

And on October 18th, 2011, this is the building from which I exited, exactly one week prior to the Fifth Anniversary of the commencement of "Let's Poison AnneMarie."

Five years ago, a petrified patient.

And this is what a "survivor" looks like during follow up exam time.

This is what a survivor feels like waiting for results DESPITE their stage at diagnosis or their statistical prognosis.

At follow up time, statistics don't matter.  This is the face of a survivor.  Still petrified.

MENTAL GYMNASTICS, ROUND 3

Today I have my final Brain Evaluation.  Since my brain was reduced to mush over the weekend, I fully expect I am going to perform horribly on the tests.

First, I had what I would describe as a rather monumental marital issue which has reduced me to a non functional heap of pretty deep pain, and seriously, I need to understand WTF is wrong with me to even ENTERTAIN a conversation with that guy but I'm still going to leave it at that.  Can't share, not ready, might be ready but too painful, may never be ready-too humiliating.... not sure AT ALL.

Item B?  My daughter's surprise visit.  She lives in Nashville.  It was so good to hear her voice as she came through the door and it felt great to give her a giant hug.  Sounds like it was pretty great, don't ya think?  And, it was.  Right up until she started to say words like BRCA test and information someone gave her about removing her ovaries to reduce her breast cancer risk by a certain percentage.

I don't know what she said the percentage was and I do know that BRCA testing is useless since neither of my BRCA mutations are known or identified cancer causers.  I just remember saying she was too young to consider removing her ovaries.  She said she wasn't thinking of doing that, but clearly, she had this conversation with someone.  Clearly, she is concerned.  Clearly, it's far easier to wrap her brain around removing her ovaries (at 26 years old) than it is to let her mind go "there."

Clearly, I am absolutely sick to my stomach at the thought of what is going on in her head.  That was Saturday.  The marital bullshit was on Sunday and it was epic.  THAT was a kick in the stomach and a punch to the head.

Sleep came somewhere around 3AM and I am heading off to an evaluation shortly.  Can I POSSIBLY get this shit out of my head and focus?  I can't focus when I have zilch on my plate and now I have two major emotional and stressful distractions to pile on the heap.  Yay Me. YAY. YAY. YAY.....

Let's just continue in the theme of things that create stress in the lives of the cancer people...... I mean, as long as I'm on this path anyway, let's just keep it coming.  Still wondering about the low grade fever and thinking about the antibiotics that had to be changed.  What is going on and WHY am I still not right?  I'm going with, "There's a bug going around."  And that would be just fine, EXCEPT:
  
Tomorrow, I have my routine oncology appointment.  Those looming appointments ALWAYS screw with my head.  Even though I fully expect everything is fine and will stay fine, unless, of course, I do have leukemia...... oncology appointments require no further elaboration/explanation.  If you get it, you get it.  And if you don't, you never will.  And hopefully, you never WILL.  This club is big
e-f'ing-nough.

The point?  If this is the only entry on this blog the entire week, I'm cutting myself a wide path of slack.

I DO want to share the amazing experience I had kicking off the NY Avon Walk.  I met some wonderful people from all over (including a woman from Australia) and Cow Guy (you'll have to wait, I have pictures and HE is an unbelievable human being).  It was emotional and I wasn't really part of the event.  I was there to recruit for Army of Women.  And, I'm happy to share that over 200 people signed up. And a handful of those people were men.  Real men can join the Army of WOMEN.  Cow Guy is definitely a real man.  And I do promise to share the wonderful day I had in the heart of NYC, as soon as my brain re-enters my head.

BREAST M.A.P.

To survive the disease is not to be cured of the disease.  Survival comes at a price.  It's not possible to cut away body parts or poison the blood without some sort of ramification somewhere down the road.


The scars are a visible reminder of what was cut away.  My previously organized office and my inability to stay focused are a reminder that poison takes its toll.  And then, there is the downplayed, often ignored and rarely even acknowledged long term emotional aspect of survivorship.  There is an element of guilt that accompanies the "I survived" while someone else fears death.  There are feelings that are ignored rather than stared at head on.  Ignoring the feelings creates fertile ground for anger and depression.  And FEAR.


I've had a low grade fever on and off for the past two weeks.  I know exactly what is wrong with me. And I will be getting proper medication for a silly infection.  The thing is..... I know too much.  And I know about the poisons used and I know the risks associated with some of those poisons.  This fever?  I've ignored it and explained it away and I KNOW it's nothing.  But, cancer changes the landscape of life.


An "on and off" fever?  For two weeks??  Talked myself off the ledge twice in as many days. "Suppose it's leukemia?" Logical AM knows this is so far out of left field but just like CB can derail an entire day with just one small snafu, a lingering fever?  Leukemia.  And, now that I've given myself a headache THINKING about this, I definitely have something going on in my brain.  Equally idiotic. Cancer changes everything.  And it IS that simple.


It's Game On as explained in this article because some of us would prefer to not wear the smiling, pink bandana wearing, sneaker walking, balloon holding rah rah rah face 24/7.  We'd like the "luxury" of not wearing the happy pink face every once in a while.  We are HUMAN.  If you won the pink ribbon and are a survivor, the only acceptable thing is to smile.  All the time.  I smile and laugh MOST of the time, but jeez, there are moments and now I have to feel guilty over my feelings, too. Some of us have done that throughout the entire time of our illnesses and some of us are now supposed to be well rooted in survivor mode but if NONE of those fears or feelings were addressed, and I mean EVER addressed, they are going to pop up sooner or later.


The Wall Street Journal article is about the results of a study in which I participated and it's a study that anyone may join. I'm pretty thrilled to say I was in this thing from the very beginning.  The results of the first batch of surveys were just published and yay, validation.


And, there's something very weird happening.  Today, I am at an Army of Women event.  About a dozen of us hold the same volunteer role in various parts of the country.  Can I get someone to calculate some odds for me?  I am in NY and one of the other women is in LA.  How is it that we were BOTH participants in this inaugural study of just 1043 breast cancer survivors.  Seriously?? And, three thousand people from ALL over the world on an April Cancer Care Chemobrain webinar?  Both on that, too!  And now, we just met because we are both actively involved in Army of Women????


I love coincidences!  Takes my mind off stupid stuff, like imaginary diseases.

IT'S UP TO US TO SPREAD THE WORD

I began my adventures into blogging in July.  In other words, I'm the new kid on this block.  I also became The Dim Twit of the Tweet World.  I'm trying to understand this "reply to" "retweet" stuff.....


Today should be interesting.  On behalf of those who are living with Metastatic Breast Cancer, I will spend the day seeking out facts to educate, to enlighten and to push for more research and more funding specifically for MBC.


I am grateful for early detection.  I am thankful for the volunteers at many of the October pink events.  I am equally disturbed that advances in the treatment of MBC are stagnant.


Learn with me as I am sure there is plenty I WILL learn in my endeavor to reach out in support and solidarity to all of those living with breast cancer that spread.  Peek back every so often and glance at the twitter feed.  It will be updated frequently throughout the entire day.


This is for the metavivors.  They deserve more than a day and they deserve so much more than the minuscule amount of research dollars that are sent their way.  They deserve to have their voices heard.


Some of the quotes I used yesterday came directly from women living with MBC.

This is the Monday Tweet Chat on Metastatic Breast Cancer in its entirety if anyone would like to read what went on for an hour.

Tomorrow, I will be in NYC at the Sheraton Hotel in advance of the Avon Walk.  I will be there with some of my fellow members trying to enroll as many women as possible into the Army of Women.  I can't stress enough the importance of getting as many women to join...... ALL women (and some men, too).  We need to do the research.  We have the funding.  We need to fill the studies.

BE the bachelorette.  Hold that batch of roses.  Watch out for the eligible "bachelors."  If you like one, toss your rose in that direction.  You can't know if you want to participate if you don't know WHAT the studies are all about...... aren't you curious???  I know I am.  Show me the studies.  And I'll make the decision what to do with my rose(s). 

I hope for a wildly successful event tomorrow!  The brave ones who are doing the actual walking....... they should have perfect weather.  Pictures on Monday.....  

MBC=IT SPREAD

I take too much for granted.  Because I am an over informed font of (mostly) useless information, sometimes I am stunned.  Tomorrow is the one single day during the entire month of October, BREAST CANCER AWARENESS MONTH that is devoted strictly to raising awareness of Metastatic Breast Cancer.


A show of hands?  We are all aware that cancer can spread outside of the area where it began?  Are we aware that a breast cancer patient whose disease has traveled outside the breast is still a BREAST CANCER patient?  If the cancer decides, for example, to attack the brain, it's NOT brain cancer.  It's breast cancer that has spread to the brain.  Likewise, if a patient with lung cancer has a similar spread to the brain, it's NOT brain cancer.  It's LUNG cancer that spread to the brain.  


Why is this important?  Quite simply, when cancer spreads, I generally hear things like, "First it was breast cancer, now she has lung cancer and bone cancer."  There was a tweet chat the other night and the topic was metastatic disease.  In the old days, we would simply say, "It spread."  Maybe we need to just get off the big words and go back to basics.  


While the pink banners are flying and the balloon arches are floating and the ribbons are pinned everywhere, MBC is pink, too.  It's the pink that is on the bottom of the pile.  It's buried.  These aren't the feel good stories.  These are the patients living in pain.


These are the ones who will whisper to only their closest friends, "I have never been so afraid of anything in my entire life. I don't want to die."  These are words that were recently repeated to me because some (many?) MBC patients prefer to close out most of the outside world.


And, these are the words that were spoken by a few during that online chat on Monday night:

MBC is not a "type" of breast cancer. Coworker said "I never heard of MBC is it a rare disease?" It is incureable. Treatment is 4ever 


treatment is for the rest of our lives. I find it relentless and grueling. Many people ask me when treatment will be over?


One third of all breast cancer patients will become metastatic. Ignore us at your peril.


I also want people to know that very little money is directed towards mets research and this has to change.


I've had people say when I say I've got metastatic breast cancer 'what does metastatic mean?' jaws drop when I explain


we learned this spring that only 3% of breast cancer research funds are for metastatic cancer research


... ultimately, people don't die of a tumor in a breast. We die after the cancer has spread,become metastatic - or from treatment.


It would really help if "The Media" would do justice to MBC. The stories need to be told well-not sappy or pinky...


Media likes stories w happy endings or that have possibilities. Possibs 4 mets = rare 




My energy, especially this month, is mostly for my friend whose mets progressed at warp speed. She got the all clear.  The Stage 1, All Clear.  And a year later, It Spread.  After three months on meds to attempt to address what was happening in the bones, a rescan of the bones showed no change. Further testing showed mets in the lungs, liver and brain.  In THREE months time, while on chemotherapy.  Every likely organ that breast cancer likes to go, it went.


Billions of dollars will be raised, especially this month.  I hope it helps those who need it most. 

CALCULATING RISK FACTORS

I have read that most women do not properly calculate their risk factors for developing breast cancer.  Most of us think we are at higher risk than the reality of our particular circumstances.


Yesterday, I received an email from Medscape.  I would post the link, but it requires registration to access.  The credentials of the person who posted this chart?


Dr. Katherine Kolor from the Office of Public Health Genomics at the Centers for Disease Control and Prevention (CDC). I am speaking to you as part of the CDC Expert Commentary Series on Medscape.


There is a very powerful line in a movie about a wife suddenly having a very emotional reaction to the antics of her cheating husband.  The premise?  The wife knew about the infidelity for years but as explained by the (not very nice) spouse, it's one thing to know about the cheating and it's quite another to actually read the love letters.  And so it goes with this risk factor chart.


I recently remembered my very first non surgical biopsy and I can still see the note in the doctor's handwriting on my chart.  "Strong ++ FH"  ....  At the time of my diagnosis, my family history (FH) was my mom with a pre-menopausal, under age 50 invasive breast cancer that was already in four lymph nodes by the time she was diagnosed.  It was her first mammography.  She wasn't going to go.  My dad insisted.  It was 1987.


In 2006, I was diagnosed with an invasive breast cancer.  Premenopausal and under age 50.  When my daughter asked me the question that still rings in my ears, "What does this mean for me, mom?" I replied that it was more of an issue for my two sisters than it was for her.  Apparently, I was mistaken.  At that very moment both she, my two sisters AND my two nieces all hit the "strong" box.


With my diagnosis, there were now two "first or second degree relatives" with breast cancer diagnosis, BOTH before age 50.  Technically, only one of us needed to be under 50 for all of these people to hit that box.  Since my diagnosis, my mom developed a second breast cancer in 2007.  My youngest sister, at 42, developed a breast cancer in 2010.  My other sister, for all intents and purposes was simply lucky.  A surgical biopsy got the cells as they were already pre-cancerous and a pretty high grade at that.  


The three of us with definitive cancer diagnosis were BRCA tested.  I was the first one tested and I have mutations on both BRCA1 and BRCA2 but they are of unknown significance.  Because of my results, mom was tested and she sequenced out completely clean-no mutations at all. My youngest sister has a match to one of mine but they are close to classifying that as a "harmless" mutation.


Clearly, something is going on here and I, unlike most women, have tried to err on the side of understating our family risk.  Clearly, I have been mistaken.  Clearly, besides my daughter and my sister's daughter, I see that my brother's daughter is also in the strong category.


I am a scorned woman.  Knowing this was one thing.  Seeing it in print?  I am devastated.  And now I am more determined than I ever was to be the change, to see the change, to be part of the solution, to make a difference.  For D, For N and most especially, for YOU, Stephanie.  I love you.  I love the three of you.  AND, I love all of YOU too for reading and supporting my efforts with your encouraging words.


Yesterday, I publicly acknowledged that it can't stop with me.  In the near future?  It has to stop.  I can't watch this trickle to the next generation.  The thought is very disheartening.


Have you JOINED The Army of Women, yet?  Use the link on the right.  Or grab your phone.  Text the number 46637.  Enter armyofwomen in the text message.  Follow the link in the reply.  My daughter needs you, my nieces need you.  And I thank you.


It's up to us to be the change we wish to see.  It's up to us to shake it up and make it happen.  The status quo sucks.  Yeah, more of the same old, same old?  It just ain't workin' for me any more.   

 

Risk Category	Family History*	Example	Effect on Cancer Risk	What You Can Do
Average	No first- or second-degree relatives with breast or ovarian cancer or Just one second-degree female relative with cancer of onebreast diagnosedafter age 50	Grandmother with breast cancer diagnosed at age 75	Typically 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
Moderate	Just one first-degree female relative with cancer of onebreast (diagnosed at any age) or Two first- or second-degree relatives (female) with cancer of onebreast diagnosedafter age 50 or 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 or 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 cancer	Taking 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†
Strong	Two‡ 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 cancer	Not 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