ON YOUR MARK, GET SET ......

It's very hard for me to read things that I know, at their core, are not correct.  Sometimes, it's even harder for me to put into words WHY I know the words are blatantly wrong.

The following words are in print, on a blog, that is written by a doctor.

"Scientists agree, at least 30% of breast cancer is preventable using known and proven risk reducing strategies."

This is called SPIN.

My understanding is that approximately one third of the cancer diagnoses (across ALL types) is considered "preventable." That number takes smoking into account as a controllable factor.  Colonoscopies and PAP tests have helped with colon and cervical cancer.  Ceasing the use of HRT has impacted the breast cancer rate.  

Directly addressing breast cancer, if I understand the research, we are in control of about 30% of the factors that contribute to any one cancer.  The rest is left to the luck of the draw.  The way that statement is written, I hear this:

If ten of us are lined up, 3 of us are "preventable."

Apples and oranges.  NO breast cancer is preventable.  Repeating for maximum impact:  We Can Not PREVENT Breast Cancer.  We can not prevent breast cancer from metastasizing (a topic I'm not going to broach today but it will be broached many times over the next 31 days).

In 2013, the word prevention has NO PLACE in the breast cancer vocabulary.  Period.  We can reduce risk.  We can be PERFECT at "using known and proven risk reducing strategies" and any one of us, pitch perfect, can still develop breast cancer.  

That statement is a jumbled mess.  Or, it's taking a statistic, twisting it to suit some message, and then, repackaging it to punctuate a highly flawed agenda.  And, it implies blame and that's just not where I want to be this year as October looms just hours away.

Susan Love, Chief Visionary Officer of the foundation that bears her name, the umbrella organization under which the Army of Women initiative falls, is THE go to person on research into the cause of breast cancer.  First understand the cause, then research ways to interrupt the process... to beat the cancer cells at their own game.

That day isn't here yet and for a doctor to word a statement in the aforementioned manner is misleading, irresponsible and like I said, SPIN.

Prevention in any one of us, in every one of us, is a goal.  There is no way to guarantee prevention.  Yet.

What can we do on the eve of a month of education?  For starters, join the HOW study, another initiative of Dr. Susan Love Research Foundation.  There will be events.  Plenty of them.  There will be products.  Plenty of those, too.  I commit to encourage enrollment in HOW every place I see anyone rallying support for breast cancer.  I hope you will, too.

The answers lie in our bodies and the researchers will have a better idea of where and how to look if we begin sharing information.  The is the age of information.  The information is going to prove to be as important as the science.  IF we can gather it.

Let's do this.  Ladies, start your engines........

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JOURNEY WITH SANDY

Sandy Kugelman is my friend.  She is one of the women in the Stage IV support group that is featured in the film Pink Ribbons Inc.  They call themselves the IV League.

Sandy writes beautifully.  She uses Facebook notes to write her updates.  I asked her permission to reprint her words here. In true Sandy fashion, her reply, "Yes, of course. No need to ever ask."

As October looms large, let's remember we are in this to see change, to shake up the status quo.  Seeing the words significant progression weighs heavily on my heart.  How bizarre that the ion, changes the whole message.  Significant progress sounds like it would be success.  Add that ion and progress becomes progression and suddenly, the whole game is changed.

Except, this isn't a game and frankly, enough is enough....  And Sandy... I'm sending you everything on your list... prayers, karma, thoughts, woo woo and everything else you can think of....

xoxoxox

Addition to this post....  Sandy's whole story appears in a news article:  Writing Back To Cancer.  It's the whole story and it's truly an excellent read!  The link works today but it's a publication where it may "archive" .... thus, if the link doesn't work when you click, shoot me an email, I'll be happy to hunt it down.

Dear Everyone,

I've noticed that a lot of people use the term "cancer journey" lately and I just want to say that this is SO not a "journey". Journeys are voluntary and they connote something positive. Perhaps baskets of goodies to Grandma's house? An adventurous trip to a faraway place? This is neither. I'm sorry if I'm bursting any bubbles of inspiration, but this is my truth right now and I've always been honest with you. Stage IV cancer is not a journey. Maybe some other kinds of cancers are, I don't know. Just don't call it a journey when someone is in the thick of it. There is nothing fun about it and it is filled with the deepest sadness and loss I have ever known. Not a journey at all.

Today I had a CT scan of my chest, abdomen and pelvis. We have been concerned about my digestion, my constant fevers, and what appeared to be ascites. We have discovered that there has been significant cancer progression in the whole area. My lungs are worse, my liver is worse and now there are significant tumors in the peritoneal cavity as well. 

So now we have some answers: My constant fevers are indeed "tumor fever". My digestion issues are a result of minimal space so it puts a lot of strain on my system to eat more than a teeny amount. It's a puzzle to me as to why I could eat ridiculous quantities on steroids, but I'm wondering now if the steroids kept the swelling of everything way down and was a temporary fix.  

The Plan: We will stay on Doxil. It was very effective before and we are hopeful that it will be equally miraculous this time. In 6 weeks we will scan again and if there is disease progression, we will switch to a different drug combination (Carboplatin and Taxol for the fluent speaker :). 

So that's today's update. Oddly, I have felt a little better the past two days. Go figure. It reminds me of when at the end of our dog Hector's life, he was running friskily around having a great time and my mom said, "Look at him! He's so happy because no one told him he has cancer!" AHHHHAHAHA!!! SO TRUE!!!!

Please keep sending those prayers, karma, thoughts, woo woo, jew jew, love, etc. 

Sending love to all of you.

Sandy

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I SUPPORT #MesoAwarenessDay #LCSM

Eleven months ago, I received an email.  It was from a husband, a daddy and suddenly a caregiver to his wife.  Cameron Von St James reached out to me and I hoped to share his story, Heather's story on this blog.

We first connected right before Sandy left me (and the entire NY area) with a giant mess on my hands.  Then, we reconnected as the holidays approached and I was preparing to take my sister, and then, my mom, for biopsies.  When we next connected, I was sharing the details of my mom's diagnosis of metastatic disease.  There was always another "thing."

Maybe that's the way it was supposed to happen.  As it turns out, Cameron contacted me a few weeks ago.  TODAY is Mesothelioma Awareness Day.  I was vehement about awareness and how that ship has sailed.

And yet...... Here is a perfect example of a need to raise awareness.  Get people talking.  And educate.  Awareness without education isn't effective.  Now you are aware.  Learn about Heather and how she empowered herself.  Share with the lung cancer community at large and today, especially, on behalf of those diagnosed with mesothelioma.

Today's goal?  Helping to share the voices of those Dying to Be Heard.  Please do click and see why that goal is set at raising 7200 voices in solidarity.

We need to stand shoulder to shoulder in support of every form of cancer education.  Because yes, all cancer is NOT pink. Can you help share this message?  Share from Heather's link, or share this blog across as many channels as you see fit.

And please, do listen to Heather, beautiful Heather, in her own words:





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SAME CELEBRITY, MORE MEDICAL ADVICE? ENOUGH ALREADY......

I need to pick my battles.  It was with complete sincerity that I wrote the post that appeared yesterday.  I hope the message was clear.  Live and let live.  Embrace differences.  Acceptance.  EXCEPT....

I didn't count on another Suzanne Somers thing and there is a caveat (for now, just one and hopefully, it will remain, just one... I don't like the unforeseeable stuff).  As an advocate who takes this role quite seriously, I can't sit on the sidelines while people use their celebrity to peddle things that move into the medical arena.

In December of 2011, I wrote a blog that I titled Medical Advice From A Celebrity May Be Bad For Your Health.  The celeb in question was Suzanne Somers and She's BAAACK.  She wrote a book for the perimenopausal crowd.

She was a guest on the Katie Couric show and to be fair to Katie, she did mention that Suzanne's gig has created quite a controversy.  Katie would be completely accurate in that assessment.  I depart from my fairness when Suzanne was on the stage touting her great sex life which she credits to a loving, long term relationship, (no disagreement there), along with the slathering of estrogen, progesterone, testosterone, HGH etc (yes there are more...) along with some 40 supplements in the morning and another 20 in the evening.  And, there was no one with ANY medical credentials on the stage to balance the conversation.

Suzanne thinks there's a "new way to age" and it shouldn't be the way our grandparents aged, "all pilled up."  She also notes, "Perimenopause is the most dangerous phase for a woman."  She goes on to say that perimenopause is the time she developed her own breast cancer.  Subliminal messaging?  Perhaps.  Then she went into a full pitch about bioidentical hormones.  Were this a medical conference, a financial disclosure would have been made.  Suzanne Somers is not only selling a book, she's proudly affiliated with the company that facilitates the distribution of the bioidenticals.

In the world of medicine according to Suzanne, they are plant based, therefore, they are not synthetic, they are not drugs, they are exactly what our bodies would be doing on their own if we were at the RIGHT AGE for our bodies to be doing this, they are natural because they are being produced from things found in nature.

This is where I wish I could insert a sound.  You know the sound?  That BUZZ... you are wrong.... ding ding... go away.

Dr. Donnica Moore, was seated in the audience to offer some medical information.  Real medical information.  She explained that menopause is not a disease but a phase of life.  She complimented Suzanne's appearance and with a nod to When Harry Met Sally, said it would be hard for any woman to look at Suzanne, at 66 years old, and not want to say "I'll have what she's having."  However, she stood her ground.  Healthy diet and exercise are key.  Sleep is exceptionally important (thank you, Dr. Attai for being the bed police).  Having great sex is the icing on the cake.  (As an aside, Dr. Moore did make it a point to clarify that Suzanne's husband is also taking testosterone.)

Dr. Moore was being nice.  I'm pretty sure she would have liked to have jumped out of her seat, grab a microphone and speak to the audience from the same vantage point at Suzanne Somers.  Instead, she gracefully stated that blanket recommendations for all women are not made based upon what works for one woman.  She touched on hormone replacement therapy.  NOTE to all.  The biggest decline in breast cancer was seen when HRT was identified as a contributing factor to the development of breast cancer and the practice of just prescribing it across the board was stopped. Don't believe me.  Check with Dr. Love on that.

I think Katie did a bit of a disservice to open up that conversation in such an unbalanced fashion.  She has a huge audience. Katie is a staunch supporter of **All Cancer Research**.  She delivered the keynote at the Annual American Association for Cancer Research meeting.  She is a Co-Founder of Stand Up 2 Cancer.  For heaven's sake, she had a colonoscopy on national television.  Donnica Moore should have been seated on the stage.  Suzanne Somers did not deserve the last word in the conversation.  That may not be how it actually happened on television but that's the way the clip appears on Katie's website.

"Who wouldn't want to be like me.... I've got a rockin' libido.... blah blah blah"

I think Ms. Somers should go back to selling The Thigh Master and leave her medical opinions in the green room.

To Clarify:  I LIKE Suzanne Somers.  She's an entertainer.  And, in my most humble opinion, there's nothing more dangerous than a celebrity with a tremendous following, delivering a message they have no business delivering.  Talk to me about your great marriage, the fabulous sex, being on television.  Let me admire your appearance at age 66, with an understanding that MONEY does help.  Hell, tell me you are taking all kinds of stuff.... just do NOT position yourself as an expert.  People are hanging on to your words, quite possibly putting themselves in danger of developing the very cancer your carefully positioned words seem to imply this regimen might afford protection against.  Katie, I LOVE you.  I sat in the audience at the AACR meeting.  You are brilliant.  I'd love to see a do over or a proper segment with medical doctors on both sides having the discussion.  

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AWARENESS NOT WELCOME HERE

It's here.  Almost.

I'm done with awareness.  My campaign for the month of October will be focused on education.

Let me be clear.  In much of the USA and in most westernized countries, we do NOT need awareness campaigns. However, there are plenty of locations in all corners of the globe where such campaigns are essential.  I have friends in some areas where there is a disconnect and I will support whatever efforts they feel are necessary because awareness is lacking.

Geographically, this is not one of them.

Awareness is a word I intend to ban from my language.  The awareness ship has sailed.  It's time to shine a light on the facts.  The cold, hard facts.

The illusion of progress cloaked in pink and tied with a neat ribbon is the result of too much awareness.    I will be respectful; I will use this space to dispel the myths; I will share facts.

I believe in research terminology this is referred to as actionable findings.  We need to come to some sort of actionable methods to change the conversation.  To unify.  To realize that together, we are stronger.

The pendulum has swung and it seems to me, it's gone too far in the other direction.  We are a polarized community.  That doesn't bode well if the goal is progress.  The stage is set for a war of words.  Frankly, I'm tired of lip service.

No, this is not me throwing in the towel.  NOTHING could be further from the truth.  It's time to stop talking and it's beyond time to start doing.

There is no right way or wrong way.  We are all on the same mountain.  There are many paths to the top.  Is it worth our energy to argue over war metaphors?  Isn't our time better spent doing anything aside from discussing our feelings about pink, about the ribbon?

How about discussing the facts in priority order?  Priority one, metastasis.  METAvivor volunteers are working tirelessly to change the conversation.  I'm all in on that initiative.  Where is the splashy campaign for those living with metastatic disease?  Which big network is running a significant story dedicated to metastasis?

What about those with rarer forms of breast cancer, the inflammatory breast cancer patients and those with triple negative disease?  What can we learn about IBC and TNBC?

Who's helping those who are unable to pay for treatment?

Corporations are not in the business of philanthropy.  If they are in the ribbon game, are they being transparent?  Where are they sending their money?  How much are they sending?  What is the recipient doing with that money?  Are they making a difference in the communities they have chosen to support?  Are they funding research that holds the promise to allow us to make meaningful progress?

All I ask is that we all ask these questions.  If the answers are satisfactory to you, go for it.  If they aren't, say something. If you aren't sure whether the answers are satisfactory, ask more questions and keep asking until you have the answers you seek.  Armed with information, you will know what to do.

That's what we call a Pink Stink.  Know that each of us has a different thresh-hold for what we consider to be acceptable. Some of us are intolerant of any profits being made on the backs of our disease and others are fine knowing a portion of the profits are being donated.  No finger pointing because there is some imaginary formula regarding where a line should be drawn.  If there is money on the table and it's going somewhere worthwhile, we may need to soften our stance.

I repeat.  Acceptance.  Together we are stronger.

The ribbon is big business.  The ribbon isn't going anywhere.  To that end, it's up to us to change the marketing.  To change the message.  To support the work of the researchers who are trying to change things for my daughter, for the next generation.  Prevention.  To support the work of the researchers who are trying to save my mother from dying of anything other than breast cancer.  To support the work of those who are trying to find ways to allow me to use the word cure when I share the fact that I am a breast cancer patient.

My daughter is at risk, my mother is metastatic and I'm not cured.  I have skin in the game.  In all of the games.  It makes it very easy for me to look at this from every angle.  Lucky me.  I'm multi-dimensional.  A previvor, a metavivor, a survivor.  The trifecta.

As a multi-dimensional patient-advocate, activist, rebel rouser, noise maker, I no longer want to simply make noise.

I want to be effective.

I want to collaborate.

I want to be the change so I can hopefully see the change.

You in?  There are far too many questions.  It's time for answers.  And actionable findings.  It's TIME.


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DON'T TELL ME HOW TO FEEL AND **DO NOT** INSULT MY INTELLIGENCE EITHER

I have better things to do with my time than get riled up but if we, as advocates, don't take the opportunity to speak out, we are not being very effective and we are allowing the myths to perpetrate.  I SWORE, I promised myself, this year, my October campaign would be my own brand of awareness.  I don't care about ribbons.  I don't care about pink.  Love it, hate it... it makes NO difference.  I don't care about war metaphors.  Love 'em, hate 'em... again, it makes no difference.  Pink products?  If the products are being sold with transparency and you are comfortable with the company whose products you purchase (and you are also fully aware of who is benefitting from the donation), again... it makes no difference.

Yes, I have plenty of opinions, but they are just that.  Opinions.  My feelings.  My feelings aren't more right than anyone else's.

I've come to embrace my own words.

There's no right way to do cancer.  There's only the way that works best for each of us.

We may not all agree on the choices of others, but that doesn't give us the right to sit in judgement.  What happens when we do this?  We divide a community.  We get nowhere fast.  It's time to realize, together we are stronger.  We, and by we I mean those of us in the breast cancer community, are already looked upon as the fair haired children in Cancerland.

If I am to be totally honest, this hurts me.  "So much money goes to breast cancer." "More women die of other diseases." "Breast cancer gets all the attention."  ALL of this is true.  But let's stop right there.

The very bottom line in cancer, all cancer, across all types, is DEATH.  And this is why it hurts to hear those words.  To listen to those statements.  Is breast cancer really getting money to prevent death from the disease?  Are those living with metastatic disease getting all the attention?  No... and No.

Yesterday morning, someone sent me what I initially thought was an irresponsible headline.  Turns out, it wasn't just the headline.  It was an entire piece of journalism that was filled with untruths.  In about ten minutes, I "scooped" the piece. Not important to understand what that means, but here's the link if it matters and you must understand what it means to "Scoop It."

The title of the article?  Don't Be Afraid-Breast Cancer Is Curable.  YES, that appeared in the Just 4 Women section of TBN Weekly e-edition.  After I read the thing, and I got my blood pressure back from "you are going to have a stroke level," I began to write.  What appears in bold is verbatim from the article.  My comments follow each item I found to be a problem.

Unfortunately, the entire article save a paragraph or two was replete with half-truths, mistruths or long proven otherwise information.  The fact that Cliff Leaf sent this tweet, lets me know I wasn't so far off base with my observations.  Yes, I'm name dropping (and those who know me well enough, know I'm NOT a name dropper... I really don't like that but.......) It's validating to know that someone who did such extensive research on his stellar book, The Truth In Small Doses, thinks enough of my observations to take a moment from his life to encourage me with a vote of confidence.

@chemobrainfog @scoopit AnneMarie has nailed it again. Thank you for staying tough: http://t.co/bEJY7mOtee
— Clifton Leaf (@CliftonLeaf) September 19, 2013

  

Again.. this is from my little newspaper.  From the article... In Bold.  The rest... Me.

     "Not only is the headline the most irresponsible thing I've ever read, the CONTENT of the article follows suite.  We don't use the word "curable" in the world of breast cancer advocacy.  Those of us with close ties to the metastatic community are acutely aware that 30% of us, with early stage disease, will go on to develop distant, FATAL recurrences.  I don't know if something was lost in translation between the doctor and the author of the article, but the whole thing is extremely troubling.

The most egregious of a very poor piece of journalism:

We’ve come a long way in the fight against breast cancer, and additional progress is made each year to better understand the enemy.

(ME.. no, we haven't come a long way, we are barely beyond the starting blocks.  My treatment in 2006 was nearly identical to my mom's in 1987)

While there’s still much work to be done, the good news is breast cancer is curable, if caught early enough.

(ME.... see comment above regarding the word cure)



Doctor John West, medical director with the Tampa Bay Oncology Center in Largo, said about 90 percent of breast cancer cases are curable when found in the early stages.

(ME.... ditto above)



Even better news is that fewer women are being diagnosed with advanced stages of breast cancer these days, which West credits to aggressive education campaigns about the importance of breast self-exams and mammograms.

(ME..... read the REAL stats.  Number of deaths per 100,000 women which is really the only way to measure the success with advances disease, is barely changed.  On my blog...)



West has 30 years of experience as a radiation oncologist. An oncologist is a physician who studies all cancers and specializes in different areas of treatment – radiation, surgery and chemotherapy. In some cases, treatment is coordinated between all three.

(ME.... in all cases, treatment determination should be made by consulting all of these doctors: surgical, medical and radiation oncologists)



“It can be a team effort,” he said.

(ME.... "can be"  .... NO, it MUST BE a team effort)



Women who are diagnosed in the early – curable – stage will first consult with their doctor to decide if they should have a mastectomy or not. West said the vast majority of women prefer lump removal, lumpectomy, followed by radiation therapy, if there has been no spread of the cancer.

(ME..... Show me the data.... seems like someone may be pushing an agenda... but I'm so annoyed right now, I'm not thinking clearly... so, just show me the data)



He said radiation therapy is time consuming, but it allows women to preserve their breasts – the contour, shape and texture. He said the results of the biopsy, which determines the type of tumor, most often determines the best treatment method.

(ME..... radiated skin can be a problem and all lumpectomy affects contour, shape and texture.... very few walk away with NO noticeable changes in appearance)



Women who are diagnosed with advanced stages of breast cancer, when the tumor has grown too big or the cancer has spread into the skin, lymph nodes or other parts of the body, are harder to cure, and doctors may not be able to cure them. These women are most likely to receive attention from all three specialties.

(ME.... women dx'd with advanced stages aren't "harder to cure" ... they are terminal.  They will NEVER be "cured" ..at best, they will be chronic and ONLY if the research advances to help them....)



West said women with advanced stage cancer likely would be treated with chemotherapy to shrink the tumor before having surgery or radiation therapy. The goal of this “palliative care” is to extend life and improve the quality of life. He gave an example of radiation therapy being used on a patient whose cancer had spread to the bone. He said radiation could be used to kill only the cancer cells in the bone to help alleviate the pain and let the bone heal.

(ME...... if "advanced stage" means beyond the breast, in most cases, surgical removal of tumor has not been done.  They are researching this NOW)



He said while many advances in treatment have been made, “there still was a critical need for research,” especially for treatment methods for advanced stages and women who relapse after their cancer has been cured.

(ME.... YAY on need for research... NAY on the part about "relapsing after cured" .... WE ARE NOT CURED)



Researchers are continuing to understand hereditary breast cancer and to identify those genes that put women at high risk. He said the percentage of women who carry the gene for hereditary cancer is very low, although he suspects the number is probably “higher than we know.” More work also is needed to develop testing methods, which West said are “tremendously complex.”

(ME.... a YAY, not much wrong with this)



“Eighty-five percent of cancers are the garden variety caused by a random mutation,” he said.

(ME... yes that's statistically correct.  Use the "big words" .... I'm tired of hearing "garden variety" as if this is no big damn deal.  It's caused "invasive ductal carcinoma"  ... and no one is sure of all of the factors that cause ANY cancer.... could be more than just a random mutation... maybe environmental??)



But breast cancer tends to run in families. So discussing your family’s medical history with your doctor is very important.

(ME... WTF???? MOST CANCERS occur in women with NO FAMILY HISTORY)



“It’s an enormously complicated field,” West said. “I’m always learning.”

(ME.. .leaving that alone...)



Radiation therapy has been refined about as much as possible, he said. But other treatment methods, including hormonal therapy and targeted therapies, are being used and studied.

(ME... ditto above)



“We’re not quite there yet,” he said. “But someday we’ll find that silver bullet.”

(ME... let's hope)



West said the most important thing women need to remember is “don’t be afraid.”

(ME... right.. become EDUCATED and empowered)



“Early detection is so important, 90 percent of early stages can be cured – that’s the progress that’s been made,” he said. “The tragedy is when they hide the tumor and don’t seek help until it may be too late.”

(ME... early detection is important but it's not nearly as important as once thought to be.... it's about the tumor biology.... the biggest tumors can be relatively easy to treat and some of the smallest specks are biologically aggressive.  Size matters, but sometimes, not so much)



He said breast cancer was “great shining example” of the progress being made in the fight against all cancers.

(ME... NO SHINING EXAMPLE... the end game is prevent death when "fighting cancers."  We've not succeeded in the area that matters most)



West said he’s seen a change in the perception of patients in the 30 years he’s been an oncologist.

(ME... the perception has HARMED those with metastatic disease.....  they are seen as the failures, those who did something wrong.... they are the stain on the ribbon)



“When I started practicing, there was such a negative attitude about cancer and people would come in with advanced cases. They would almost be in denial,” he said. “But thanks to public awareness, that’s changed.”

(ME... I'm done with the commentary)

End of Scoop It.  End of Rant.  I had to refrain from adding commentary to the commentary.  In reading this again, I see there IS plenty more I would add, but I think I've made my point.  And I'm sure these points will come up during Chemobrain: In The Fog The 31 Days of Awareness ..ooops, I mean Education.

Happy Friday.

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SEVEN YEAR ITCH

Today, I'm dusting off something I wrote two years ago.  The blog was new, the piece is long.  Seven years ago, EXACTLY seven years ago, I was sitting in the pre-op area at MSKCC awaiting my date with the surgeons who would be performing my mastectomy and beginning my reconstruction.  It's hard to believe it was seven years ago.

In every way, that day was the first step in bringing me to this place.  The events that precipitated my post traumatic growth had begun in April and the permanent alteration of my body was the first major physical, tangible trauma.  It feels like an eternity, it feels like yesterday and in some ways, it feels like it never happened.  Except when they itch.....

From September 19, 2011, a (slightly edited) reflection of 9/19/06

It’s been five years.  Today.  No day has affected me more than the 19^th of September, 2006.  Not the days my kids were born, not any stupid anniversary of anything having to do with anyone else either.  This day is about me.  It’s about my life.  It’s about choices.  It’s about fear.  It’s about sadness.  It’s about an education that could fill two lifetimes.  It’s about learning to self-advocate.  It’s about understanding that “solutions create problems.” And, it’s about finally embracing whole-heartedly it’s OK to have a day All About Me.  It’s okay if every day is About Me, my dreams, my desires, the life I wish to live.  I earned the right.

Kids, I love you (but we’ve already determined neither of you is reading this anyway, so no matter and besides, you already know I will stand behind you unconditionally and if I could, I would move mountains for each of you); mom-I LOVE YOU for paving a path in 1988 when chemotherapy was even more barbaric than it is today and I am appreciative beyond words that your struggles made my journey much easier than yours.  You did spare me.  Your experiences taught the researchers how to make things FAR less unpleasant for me.

Dad, I miss you and I am remembering that I made you the messenger when I first set foot into this mess.  And I remember the email you wrote to me the day you stood in that room right by my side so we all heard those words in the very same instant.  That letter is in a frame.  I know you are holding my hand through this journey.

And Linda.  You didn’t even get two months of playing The C Card before you were forced to share your limelight with me.  I will never forget how you left work one Thursday morning five months prior to my surgery and three months prior to my diagnosis simply because I was freaked out about bringing films to a surgeon for review.  Only two of you knew what was going on at the time.  Only one of you remained by my side for the long haul.  And that very same one of you was the single most instrumental person it helping me past my hang-ups.  And that same one of you got me off the ledge when my confidence was shattered and my body image was (self) decimated.

(9/19/13: Note about Linda.  Yesterday, she had her own breast surgery.  It was not a full mastectomy as recommended by the radiologist who has been caring for her and who was the shero who found her medullary thyroid cancer. Despite her increased risk, dense and fibrous breasts which were filled with adenomas, the insurance company would not cover a medically recommended procedure.  This was out of pocket and cosmetic in everyone else's view.  Another story, another day.  I'm getting ready to head to her house in a very short while.)

That is by no means an all inclusive list.  Indeed, it’s primarily a Mostly Excluded List.  My entire family rallied by my side.  Paraphrasing Lada Gaga in her Howard Stern interview, “We are Italian.”  We are good at the jump in at the first sign of a crisis.  I’m not being slanted towards my ethinicity to the exclusion of others.  I only speak about what I know first hand.  My Jewish friends, Greek friends and pretty much any other group from any other ethnic background have all shared similar experiences in moments of “family crisis.”  Italians and Italian Americans are great hand wringers.  Just sayin……

Five years ago, I altered my body.  Five months after I received The Letter advising me of the “density” that was presumed to be nothing but was worthy of another look, I was waiting to be summoned into an operating room.   I have come to realize my short-term memory (more accurately, my working memory, which by the way, IS different from short term memory) has been somewhat uncooperative.  That cloud has produced a rainbow.  My recollection of older episodes in my life has much greater clarity than I recall having in the pre CB days.  There’s an upside to everything.  If you look hard enough.  If you can REMEMBER to look, that is…..

Back at Memorial Hospital, NYC, circa 2006, the opening day of the UN General Assembly that is now inextricably connected to me, to my breast cancer and to the decision I made to have a bilateral mastectomy.  Our brains have weird ways of connecting things.  There are reasons why this UN thing is intertwined with my cancer.  It was (unbeknownst to me at the time) the reason why every hotel room on the entire island of Manhattan was occupied.  No room at the inn.  At any inn.  Just a room in Memorial.  An operating room.  Following by a recovery room.  Followed by a semi-private room with a view of the UN building.

This was the third time I was going to be greeted by the operating room staff in less than 60 days.  I knew the drill.  The pre-op clearance within days of the surgery, the phone calls I could expect the day before, first from the nurse to review all the last minute instructions and then from the scheduling staff so I would know when to arrive.  There is nothing pleasant about waiting for the phone to ring.  I was jumping out of my skin the entire day.

I don’t think I slept the entire night.  I know I had to be up early.  I remember jumping in the shower that morning.  I stood in the shower taking a long look at Me.  My tears were producing far more water than that which was coming from the shower.  And I cried in silence.  This was a personal moment.  It was a moment between me and my body.  And, what would be happening in a few short hours was as a result of a choice.  My choice.  I had clear margins when the surgical biopsy was done.  I also had a diagnosis of invasive lobular breast cancer.

I still have the copy of my pathology report where the surgeon drew the box explaining “clean margins” and then placed little dot marks of ink inside the box.  It was when she said, “The question is how do we know there isn’t a dot over here?” and that dot was OUTSIDE the box that my brain began to engage.  I knew I needed to start thinking outside of the box about how I wanted to proceed with treatment. And that is how I came to find myself at Memorial Hospital on September 19, 2006. 

I don’t recall getting out of the shower.  I don’t recall getting dressed.  I don’t recall the drive.  I don’t recall walking through the underground hallways that connect the garage to the elevator banks.  I remember crying in the shower as I stared at my body.  I remember feeling the soap and the water on my skin.  And the next thing I remember is exiting the elevator to check in on the surgical floor.  Those 90 minutes in between, blocked out.  Gone. 

What happened next is just a jumble of memories.  They are all out of order in my brain.  This, I am sure has nothing whatsoever to do with chemo brain but is a function of being as scared as I have ever been in my entire life.  Fear had me in a chokehold like nothing I could have imagined or anticipated.

I remember changing into what would be my attire for the next several days, The Blue Gown(s).  My belongings were in a hospital tote.  I remember being escorted to the nuclear medicine area to be injected with more radioactive dye for the sentinel node biopsy that would have to be performed on the good breast.  “If something unexpected comes back with the pathology, the only option will be to remove all of the lymph nodes.”  I remember how I wanted to punch the nurse for not being as adept at administering the injection as the nurse a few weeks prior.  In hindsight, I think I judged her far too harshly.  I was a very different patient on this day than I was weeks prior when I was simply have my lymph nodes checked.

I remember how everything was behind schedule that day.  I remember the kindness of the young man who was my tour guide between the surgical area and the labs.  And I remember sitting and sitting and sitting with the blue gown and the blue socks.  I remember seeing Dr. Hot Plastic Surgeon enter the surgical waiting area.  He was looking for me.  Because I had incisions from two prior, recent surgeries, he wanted to provide the breast surgeon with a roadmap.   When he was done making his graffiti marks with a sharpie pen, I officially crossed The Line.  After emerging from the graffiti zone and back to the surgical waiting area, I began to tremble.  I don’t remember anything else during that long wait.

I don’t remember when I was finally called.  I don’t remember walking to the operating room.  I don’t remember those doors separating the hallowed halls within the surgical area.  I don’t remember much of anything upon walking into the OR.  I do remember the nice blue pillow that was on the table the prior two times was not there.  Instead, there was a horseshoe shaped thing upon which to rest my head.  I do remember my mind beginning to race.  “They are going to intubate me to do this.”

Before I had a chance to freak out, everyone began to greet me as if we were going to have some grand party.  These people were simply at work.  I was a visitor to their place of business.  And they were being cordial and kind and wanted to make sure I was properly welcomed.  No less than 10 people were in that room and every one of them greeted me by name.  And the flurry of activity began.  “Blood pressure, cuff, AnneMarie.” “This is sticky and cold, AnneMarie, I’m sorry.” “I’m Dr. Feel Good and I’ll be starting to sedate you shortly.” (Ummmm, yeah… couldn’t we just skip right to that part immediately upon my arrival hours prior??)  And finally, the familiar, “Can you spell your first and last name please?” while my wrist was being examined by another person.  Just checking.  “Date of birth?”  And then, the dreaded, “What is going to be done today, AnneMarie?”  These people are all extremely soothing and wonderfully kind and display compassion and empathy that I’ve yet to witness in any other place.  But STILL.  I don’t know how I politely replied but my brain was screaming, “LOOK AT THE F’ING WHITE BOARD THAT TAKES UP THE ENTIRE WALL-IT’S ALL THERE!!!”

And, then I heard a flurry of activity, “AnneMarie, can you hear me?  You are in the recovery room.  Are you warm enough?”  Nurses.  Possibly the noblest profession on the planet.  The recovery room nurse remained at my bedside and took good care of me.  I was groggy and it was already fairly late.  I don’t think I sustained two consecutive moments of “awake time” for another ten hours.  I remember being wheeled through what felt like gallows.  An underground labyrinth-a bumpy road with wobbling wheels.  I remember being lifted into a bed.  There was an aide who remained at my side in a chair throughout the night.  It was 10PM and no, I did not know where my nipples were.

I remember waking that next morning surrounded by no less than six doctors.  That’s what happens in a teaching hospital.  And, I remember I was not bound.   The doctor gently opened the Velcro on the surgical bra to change the gauze and check the incisions.  Nothing was taped to my skin.  The gauze was loose.  The doctor asked me if I wanted to look.  I just remember staring straight at the ceiling and I remember the tears falling on the pillow.  I didn’t even respond. 

The second round of doctors arrived about an hour later.  Seven AM and six different doctors.  I remember there was a female doctor and I remember she was gently trying to suggest I look at my mutilated body.  And again, the tears fell.  This time, I remember saying, “I can’t.” 

I do believe the next doctor who came into the room, did not arrive with an entourage.  She was soft spoken and she was kind and in reflecting, I think she was sent in for the sole purpose of my psychological well being.  The sooner you look, the easier it is to jump that first hurdle.  I still hear her words, “I think you will be surprised, you should look.”  Through streaming tears, I looked.  I didn’t realize they would begin filling the tissue expanders in the operating room.  Yes, I was surprised I didn’t look like a boy.

But I was more saddened by the loss of what was part of me.  It wasn’t until most recently that I finally came to terms with The New Normal in The New Body.  And it wasn’t until yesterday, that I properly grieved my loss.  I am now and was then, surrounded by a large and loving family.  In that moment, I never felt more lost or more alone.

Yesterday, I finally gave myself permission to FEEL the loss.  Yesterday, when I felt like crying, I didn’t fight the tears because that's what you do when you win The Pink Ribbon.  I cried softly, I sobbed loudly, I screamed, I tried my feel good music, I tried yoga and ultimately, I just had the funeral I never held because, after all, the world has been telling me forEVER that The Pink People are the lucky ones, the strong ones.  Good cancer, mild chemo, how dare I allow anything other than, It's Fine, I'm Fine crack the facade.   

Yesterday, I FELT everything that I have been shoving aside for too long.

Today, it’s five years which is a milestone.

Tomorrow is officially The Next Chapter.

(This tomorrow, the 2013 version, technically begins the next Seven Year chunk of time.  I hope to be here.  In 2020. Writing about The Second Seven Year Itch.  And I hope the landscape is very different than it is today.  Today, it looks much the same as it's looked for the past 40 years.  At least from my vantage point.  I hope to be instrumental in some small way in facilitating the change.  It's time.)

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WITH LOVE, REMEMBERING "JELEBELLE"

We are a community.  We are forever bonded and our bonds, the bonds formed through social media are real.

I am so sorry to share bad news but I've been worried.

I was concerned about jelebelle who blogs at Keep The Calm.  "jelebelle" is the way she signed all of her posts.  Her name is Jen.  Some of you know her.  I see your comments on her blog posts.

Jen has died.  There are tears streaming down my face as I type those words.  You see, Jen hasn't posted anything to her blog since June.  I left a few comments and over the past couple of weeks, I tried to contact her via email.  I sent out a message on twitter.

Yesterday, I received an email in response to the last comment I left on Jen's blog.  Jill, a friend who lives in Seattle and a "real world" friend, emailed me.  She provided me with her phone number, offering to give me an update on her friend. Our friend.  I knew.  As I read those words, I knew.  I spoke to Jill last night.  Jill, a complete stranger who reached out just because.  Because she was one of the champions Jen refers to in her very last post.

Jen died on July 18.  It was just weeks after her last blog post.  Jill shared what happened.  It was a rapid decline.  There was a beautiful service in a filled cathedral.  Her burial place is near a park where her 2 1/2 year old son, Milo goes to play.

Jen was 39 years old.  She was diagnosed with breast cancer and learned she was pregnant on the same day in June of 2010.  She talks about that in her blog.  She describes how pissed off she was to get a cancer diagnosis on what should have been such a happy day.  The diagnosis came first so there wasn't even a little time for her to bask in the glow of impending motherhood.

She was treated while pregnant.  Just surgery.  A unilateral mastectomy.  No chemo, no radiation.  One year later, she was diagnosed with metastatic disease.  Two years after being diagnosed with metastatic disease, Jen was stolen by breast cancer.  Another dad, now a single parent.  Another child being raised without his mama.

Jen's husband is not ready to post anything on her blog.  I asked Jill if she felt it would be okay for me to post this here.

Jill was kind enough to send me the photo used at Jen's memorial service.

Jen... you will be missed by so many of us.  You are forever loved.

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