I typically avoid pointing fingers, but in a sense, the gloves are off now.  I'm "fighting like a girl."

The Susan G. Komen Foundation has trademarked the tag line "For the Cure" as their main purpose for existence.  Their advertisements include phrases like, "Keeping a promise," (This is because Komen founder, Nancy Brinker, promised her dying sister, Susan G. Komen, that she would find a cure), "ending breast cancer," and of course, the ever-present, "race for a cure." 

When you ask the average citizen om the street wht does Komen do, they will typically respond with something along the lines of "research for a cure for breast cancer."  after all, that's how they promote themselves.  (By the way, I will be interviewing people in the month of October about their thoughts on what Komen does.)

BUT ... that's not what Komen is about.

When I asked the San Francisco affiliate of Komen what their purpose was, the stated answer was, "We are a fund-raising organization."

That's it.

They raise money.

They keep 75% of the money they raise in the local community, providing grants to local organizations that typically provide "awareness, education and support."  The remaining 25% goes to the national headquarters in Dallas.

National headquarters is responsible for research distribution. They award grants "for the cure."  You would think that all of the money going to the national headquarters would go for that cause, but it doesn't.

Only 18% of it does.

And of that, only 15% goes into metastatic research ... research against the only breast cancer that kills.

Let's look at the numbers.

Let's say yesterday's San Francisco "Race for the Cure" raised $100,000.  $75,000 would stay in the San Francisco Bay area while $25,000 would go to Dallas.  Of that $25,000, only $4,500 (18%) would goe into research.  Of that $4,500, only $675 (15%) would go into metastatic research.

Yet, the common person participating in the "Race for the Cure," thinks ALL the money raised is going into research!

THIS MAKES PEOPLE ANGRY!!!!!!

I have no problems with Komen being a support organization.  I know many local affiliates are providing necessary aid to people who are in desperate need of help.  More power to them.

However, I struggle with the manipulation of heart strings in order to pull on purse strings that misdirect funds.  Too many believe that Komen takes their hard earned dollars and truly puts them "for a cure."  Please ... Komen ... change your tag line to something more appropriate.  Perhaps, "Komen.  Support when you need it" is the direction you should choose.

You can go to my main page, "I Want More Than A Pink Ribbon" to link to sites that are actually funding research.  Make your dollars count. 

Another post for another day ... people are angry at Komen for making breast cancer the "shopping disease."  They are also angry that Komen continues to tout, "Early detection saves lives."  If this were true, then no one with an early stage diagnosis would ever become metastatic.  While the actual percentage of metastatic recurrence is unknown, it is generally accepted to be no less than 20% and is possibly as high as 30%.  Early detection saves SOME lives, but it's not the end-all-cure-all that Komen has made it out to be.  Komen refuses to back down from this mantra and fails to adequately educate women (and men) on the realities of metastatic breast cancer. 

It's hard to get people to agree on anything.  Two of the most famous English  idioms say, "on the other hand," or "on the other side of the coin," thus illustrating that people don't agree.  It's really hard to have such two divisive sides to the pink fence.

Yesterday, I linked to Peggy Orenstein's article, "Our Feel Good War on Breast Cancer," (April 25, 2013), and I quoted the following:

"The idea that there could be one solution to breast cancer — screening, early detection, some universal cure — is certainly appealing. All of us — those who fear the disease, those who live with it, our friends and families, the corporations who swathe themselves in pink — wish it were true. Wearing a bracelet, sporting a ribbon, running a race or buying a pink blender expresses our hopes, and that feels good, even virtuous. But making a difference is more complicated than that."   

(If you haven't had a chance to read the article, please take the time to do so now.)

Wouldn't it be wonderful to be a part of something that could really make a difference?  However, that means work ... hard work ... and many times, it means letting go of antiquated ideas.  Sometimes, it means leaving the side of the fence that makes you comfortable (or virtuous) and climbing over to the other side that seems strange, foreign, uncomfortable ... or complicated.

In 2014, Pfizer conducted an extensive survey regarding metastatic breast cancer and the following information resulted:

"50% of those surveyed believe breast cancer progresses [becomes metastatic] because patients either did not take the right treatment or preventive measures." 

I can almost understand the general public believing that, but one of the unfortunate truths of the Pink Ribbon Army is that many cancer "survivors" (those who show no evidence of disease) also believe this.  They believe they are cancer free as a result of something they, the "survivor" have done right and the metastatic patient is metastatic because they have not done the same "right things."

This was never so obvious as it was yesterday in the comment section below a post about a young woman who was diagnosed de novo (from the beginning) with Stage IV disease.  I tried to screen shot the conversation (see photo above), but it's rather small, so I'll paste it here:


furiouscuriouscancersurvivor says:
September 21, 2015 at 9:29 am

"This indicates she has an aggressive form of the cancer. Don’t worry so much because breast cancer is not very aggressive usually and with diet and lifestyle modification it can be beaten!"

Amy. says:
September 21, 2015 at 10:21 am

"Beth knows what she is talking about, Furious. She will be ok.."


Vickie Young Wen says:
September 21, 2015 at 1:22 pm

"Did I just read your comment correctly? Did you seriously just say that “because breast cancer is not very aggressive usually and with diet and lifestyle modification it can be beaten!”? I do hope you are being sarcastic. Diet and lifestyle modification is not a treatment option for any stage of breast cancer."

furiouscuriouscancersurvivor says:
September 21, 2015 at 1:42 pm

"Are u kidding me? I am surviving for exactly 7 years with this common sense approach! Spread the word. Only 15% of cancer survivors change their diet after diagnosis according to an Aussie study!"

Vickie Young Wen says:
September 21, 2015 at 4:02 pm

"No, I’m not kidding you at all. If you are telling me that you treated your breast cancer with ONLY diet and lifestyle changes and that you are now cancer free, then I will challenge you to prove it. If you are telling me that you are cancer free and remain cancer free after conventional treatment and that you attribute your cancer free status to diet and lifestyle, then you are the exact person who blames a person for being metastatic. If this is your thought process, you are blaming the cancer patient. Please … educate yourself. It is not the fault of the patient that they became metastatic. While diet and lifestyle will reduce risk, they will NOT prevent breast cancer, nor will they prevent recurrence. Count yourself lucky." 

I looked up this commenter's blog and discovered that like Suzanne Somers, she had surgical removal of breast cancer, but declined further treatments.  She gives credit to "diet and lifestyle" changes for being cancer free.  I do hope she remains that way for the rest of her days, but her smugness at being disease free is disconcerting.  She's convinced that she is doing something right and she's convinced that breast cancer isn't very aggressive and that if all women did what she did, then they would have the same results of being cancer free.

Ignorance is appalling in any way, shape or form.  Many who fully embrace the pink ribbon approach (and buy anything with a pink ribbon on it) feel the exact same way that the person above feels.  There's an unspoken (often, spoken as well) idea of "I survived.  I did cancer right.  I deserve this ribbon and no one has the right to deny me of this.  It is my reward."

No one denies the cancer-free patient anything.  What those of us who will never be cancer free expect, though, is for the cancer-free to be fully educated on what it means to have metastatic disease.  If the entire Pink Army stood up and demanded that their hard earned dollars go into research, then I imagine that we'd see some change pretty quickly.

But, it's easier to buy the latest Bradford Exchange pink ribbon product, or the latest pink Lokai bracelet, or the latest pink Rafaella jacket, because, after all, "I'm cancer free and I deserve it."

One of the things I've learned in my year of "official" advocacy is that in order to be heard, a certain degree of anger and aggressiveness must be used.  It's a fine line ... because, to be a voice of change, one must be willing to challenge the status quo and be willing to challenge the comfort status of that you are trying to change, yet one can't be so angry that complete alienation from the very ones who need to hear your voice occurs.  I'm still trying to find my voice and I'm still trying to learn balance.  Some days are better than others.

In order to bring about change, an advocate needs to educate *WHY* change is needed.  This can be hard to do in a world of feel-good cause marketing.

We're all aware of the massive pink ribbon movement that beautifies breast cancer.  The juggernaut of fund raising agencies using the pink ribbon is flooding social media with their ads asking people to donate in order to fulfill a "promise to end breast cancer."  I often comment on those ads (if they're in my feed, then they are fair game), pointing out that only 18% of that organization's funds goes into research (that's using their own annual reports) and of that 18%, very little goes into metastatic research. 

This exchange happened last week.   I'm not about "naming and shaming," but I want to focus on a much bigger issue here.  

A simple image of a poster illustrating the need for more.  That's it.   The Accidental Amazon is an amazing blog that gives voice to the needs of research towards metastatic breast cancer and she gives clear voice to how the pink ribbon has failed.  The poster is very clear ... if we are not aware of metastatic breast cancer, we are not aware.

Check out that response!  "Disgusted" ... accusations of "bitterness and anger." "Let people do what makes them feel good."  "Mind your own business" ... and get this ... "FIND YOUR OWN MONTH" ... and of course, the plea, "stop being angry." 

Seriously?  Those with metastatic breast cancer need to find their own month?  Quite frankly, the entire month of October should be devoted to those with metastatic disease (You know ... the ONLY kind of breast cancer that KILLS!) and have one day to celebrate those who are cancer free.  Yes, being cancer free is worth a huge party ... but not at the expense of those who are dying.  For all those shouting out, "I'm a survivor," you must remember ... you are not cancer free because you did something right.  Those who have metastatic disease are not dying because they did something wrong.  Cancer free individuals are not being rewarded while metastatic individuals are being punished.  It boils down to the fact that, after all this time, we still don't know enough about this disease and only research is going to help us learn more.

Why was the above response made?  It's not unique.  I know I've been told to stop being angry and to stop being "bitter."  (I don't think I am bitter.)  But why is  Pink Army so offended when the Dying Army challenges the ocean of pink? 

Peggy Orenstein wrote an outstanding article for the New York Times (April 25, 2013) entitled, "Our Feel Good War on Breast Cancer."  Please ... click on the link and read it now. (It will open in another window.)  It's quite long, but very well researched and gives one of the most comprehensive overviews of mammography, detection and treatment that you will find outside a medical journal.  

Her closing paragraphs clearly catches why the sea of pink is offended.

"The idea that there could be one solution to breast cancer — screening, early detection, some universal cure — is certainly appealing. All of us — those who fear the disease, those who live with it, our friends and families, the corporations who swathe themselves in pink — wish it were true. Wearing a bracelet, sporting a ribbon, running a race or buying a pink blender expresses our hopes, and that feels good, even virtuous. But making a difference is more complicated than that.

"It has been four decades since the former first lady Betty Ford went public with her breast-cancer diagnosis, shattering the stigma of the disease. It has been three decades since the founding of Komen. Two decades since the introduction of the pink ribbon. Yet all that well-meaning awareness has ultimately made women less conscious of the facts: obscuring the limits of screening, conflating risk with disease, compromising our decisions about health care, celebrating “cancer survivors” who may have never required treating. And ultimately, it has come at the expense of those whose lives are most at risk."

It gets down to this ... 40,000 people in the United States alone die every single year from metastatic breast cancer.  Every single day in the US, 110 die from this disease.  Most of these deaths are women.  It's time to send the message that simply being "aware" of breast cancer is not enough.  It's time to send the message that shopping does not fund a cure.  It's time to stop buying all the pink stuff that makes one "feel good," and it's time do something concrete for change.

Yes, it's time to get angry. 

A young (under age 40) metster friend of mine relayed bits and pieces of a conversation she had with one of the administrators of a “champion” (for breast cancer patients) group she was a part of.   I am aghast at the cluelessness involved, and quite frankly, as I used to say in the Deep South (I grew up in Mississippi), “I’ve got my mad on.”

NO ONE should ever ask a metastatic patient if they are “dying” as they are in the process of pursuing treatments, or if they project an “attitude of dying” to their family as they get those treatments.

NO ONE has that right.

The context of the conversation was in light of the idea that mindset makes a difference in how we deal with this disease.  That to have a “dying mindset” was to have a “victim mentality” and that is what kills us.  Not cancer … but the victim mentality that “steals our happiness and joy.”

I had hoped we were past this bullshit. 

This “champion” group apparently has no distinction between early stage patients and metastatic patients.  No “discrimination” of any kind.  They’ll soon find out that this isn’t really a good mix because we Stage IV gals tend to scare the shit out of the early stagers.

We NEED the early stage patients to take up our cry.  You know why?  Because we have the unfortunate habit of DYING.  Our voices get silenced and we need those who do not have metastatic disease to carry the banner.  We need to be heard and we need to be heard NOW!  We need early stagers to face the fear headon and learn what they can about what it means to be metastatic.

Admitting the seriousness of metastatic breast cancer is NOT adopting a “victim mentality.” Admitting that one is dying of metastatic disease is not projecting a “victim mentality” to family. To suggest such a thing is a slap in the face to every mets patient who goes day after day after day; week after week after week; month after month after month; treatment after treatment after treatment -- doing everything possible to stay alive for the people at the very core of our hearts. To put it bluntly, yes, we are dying as we undergo these treatments and to suggest that a certain mindset will change that outcome is to truly illustrate the absolute ignorance of the reality of Stage IV metastatic breast cancer.

This entire debacle started when an early stage patient indicated that taking a hormone inhibitor wasn’t worth the side effects because now that the early stage patient had no breast tissue (double mastectomy) that she was at very low risk of recurrence.

Yes, early stage patients are still being taught the lie that early detection means a cure.  It doesn’t.  There are simply too many women who had early stage disease who become metastatic and DIE.   Until research is able to determine which tumors will become metastatic or not, then every early diagnosed patient would be better to assume they would become metastatic than not. 

I serve as a volunteer cancer mentor.  Last week, I had a phone conversation with my newest patient.    She had Stage 1 disease six years ago with a tiny 6mm tumor.  That’s less than a quarter inch.  That’s about the size of a square on standard graph paper.  That’s about the size of a pencil eraser.  She, too, had a double mastectomy and now, to put it bluntly, the cancer is fucking everywhere.  So much for early detection being a cure for her.

Remember Holley Kitchen’s video?  She admitted that as an early stage breast cancer patient that she believed that “no breasts meant no more breast cancer.”  

I have breast cancer all throughout my body.  It’s in every single vertebrae, in both sides of my hips, in one hip socket, in several ribs, in my sternum and in my liver.  I still have both my breasts and they are both cancer free.  Neither the presence nor absence of breasts have any impact on whether or not a patient experiences distant metastasis.  It's a matter of whether or not the cancer is already in the blood stream or lymph system.

The thing is, most Stage IV patients have been early stage patients before.  Most of us know what it’s like to walk in those shoes.  Only 4 – 6% of Stage IV diagnoses are made at the beginning of treatment. 

However, early stage patients, as shown in this conversation, don’t know what it’s like to be Stage IV.  We do have champions who take up the cause (i.e. Nancy from Nancy’s Point) but overall, the early stage folks are hesitant to become too involved in the metastatic world because it’s a scary place.  It’s not a fun place to be.

Even those of us who have been exposed to the deadly impact of metastatic breast cancer are hard pressed to know what the patient actually is experiencing.  I thought I knew a lot about breast cancer due to my mother dying of the disease, but I found out that I didn’t really know anything until I got it myself.

I can’t play by the rules of politeness and niceness when my life is on the line.  While I intellectually know it’s too late for me, I emotionally hope that something miraculous will happen in the world of research while I’m still alive.  If not, then I can’t play by the rules when my daughter’s life is on the line.  It’s not too late for her.  My time is too short to stop standing up to the wall of pink.  I will keep knocking that pink wall, brick by brick, until it starts to crumble.  I will not be silenced simply because I make some people (early stagers) uncomfortable. 

So am I dying every time I take a treatment?  Am I dying every night when I swallow the two pills that are hoped to keep the cancer from spreading further than it already has?  Am I dying when I go to the lab every month to track my blood counts and tumor markers?  Am I dying when I go to my oncologist’s office every month for a clinical checkup?  Am I dying when I go to the radiation clinic every day for a month to zap a tumor in my hip socket, hoping to kill it off before it fractures?  Am I dying when I go to the radiology department for scans every three months to monitor what’s happening inside my body?

Yes, I am dying.

In spite of the words of the administrator who wants to claim that “some of us are dying. Not all of us. Some of us are living.” those of us with metastatic disease are acutely aware of our impending deaths. 

I live my days with purpose and I live my days with joy.  Every single one of those steps I outlined above are because I value my life and because I want to live.  I am nowhere near the point of stopping treatment.  I want to live as long as possible.  I want to see my children graduate from high school.  I want to see my children go to college and graduate from college.  I want to see my children get married, should they choose to do so.  I want to see my husband retire.  I want to travel more with my husband.  I want to see my grandchildren, should my children have them.  I want to live to an older age.

To insinuate that because I recognize that many of these goals are not likely to happen and to insinuate that such an admission is a projection of an attitude of dying to those I love, is an absolute picture of epic cluelessness.

It’s time for the clueless to sit down and shut up when it comes to telling patients with a terminal disease how they should be living their lives.  If they wish to speak up for the metastatic community, then they need to listen to the metastatic community.  Hear us roar.

I’m torn about how to say what I want to say. 

First of all, I don’t want to pretend that I’m a master of any kind, nor do I live under the delusion that my thoughts and opinions really make a difference to anyone other than myself.  As a writer, it helps to write things down, so that’s the primary purpose of this blog.  I don’t look for comments or praise, but I look for the cleansing of cobwebs in my brain.  Sometimes, writing helps, sometimes, not.

I am in the midst of a dark day.  The sun is shining brightly, I’ve not had to take any pain relief and I’m at home with my beloved family.  Yet, I feel the familiar fingers of fear, desperation and anguish closing in around my heart, making me feel shut off from those around me.  I’m hard pressed to communicate these inner emotions, but I’m going to try.

Summer, my favorite season of the year, never really happened for me this year.  My daughter had a great summer, but she slept away from home (without the rest of her family) for eighteen of those summer days, not to mention her many day trips.  While I am incredibly proud of the young woman she is becoming, my heart grieves over her growing up.  She’s growing away from me … rightfully so … but there is a mourning process involved in her maturation. 

Same goes for my son.  Only sixteen months younger than his sister, he, too, is growing beyond belief (both physically and mentally) and seeing the photo that showed him now taller than his dad was a heart-stopper.  My “little boy” is gone and a delightful young man is taking his place.  While I know this young man, I also feel like I’m getting to know a whole new person as well.  

I had disease progression which resulted in a change of treatment and undergoing 20 radiation sessions to my left hip socket in hopes it would reduce the risk of fracture due to the increasingly active and growing tumor there.  Time will tell whether this was successful or not, but in the meantime, I deal with fatigue, the major side effect of both the treatment and the radiation.

My dad fell in early June and broke his hip and died July 28 after seven weeks of declining health.  This was very traumatic for my siblings and me as we struggled with our adult emotions that seemed to fall back into childhood patterns.  We had differing opinions on handling my dad’s dying process and my soul is still torn to pieces over what was both said and inferred (and perhaps, things misunderstood by my own dying self).  My heart almost skips a beat when I try to process everything that happened in that seven weeks, and at this point in time, I don’t see a way out of the turmoil left behind.  I had thought the acceptance of death in an elderly person (My dad was 84-years-old.) would be easier to process, but it’s not and I hurt when I remember he is no longer here on Earth.   Grief is a physical anguish that has no physical form.  

Our family vacation was piggy-backed onto a trip to see my dad (scheduled before his fall); thus, it was hard to find joy on a beach, knowing my dad was dying.  Additionally, my husband ended up having to work many hours on this vacation and a standing  memory will be of one waiting for him to finish up so we could leave together to go do something.  It wasn’t relaxing.

The day after my dad died, a “positivity guru” posted the following quote on Facebook as the banner for a new group she was starting:

“Whatever you hold in your mind will tend to occur in your life. If you continue to believe as you have always believed, you will continue to act as you have always acted. If you continue to act as you have always acted, you will continue to get what you have always gotten. If you want different results in your life or your work, all you have to do is change your mind.” (Anonymous)

This was in direct reference to cancer and various treatments and I strongly objected to the quotation, using the following words:

“Cancer is not in my mind. It's in every vertebrae, in both sides of my hips, in one hip socket, in my sternum, in several ribs and in my liver. I live a mostly normal, active life with minimal pain, although there have been occasional bad turns. My mind has no bearing on my positive response to treatments. I've been living with this damned disease for three years, six months, one week and two days. I'm doing nothing different than others and claim no control over this disease. Being a "long time survivor" is more a matter of luck and to claim it is due to positive/changed thinking is a grave disservice (and judgement) to those who have already passed away.”

She replied back to me:

“You are wrong in saying I am implying blame for people who died. You are projecting your negativity on me. I prefer to live my life in the light and don't think it is a coincidence that in my case, every "evidence-based" doctor was wrong about my survival because they failed to factor in that which they do not understand.” (The “factor in that which they do not understand” was reference to the idea of being positive and surrounding yourself with only positive stories.”)

Later in the conversation, she indicated she was feeling a “barrage of negativity.”

That brings up a current conundrum.  Since when is disagreeing with someone a declaration of being negative?  Since when did the world decide that we have to live in agreement over everything all the time?  Since when does challenging something become a statement of negativity?

This “guru” went on to leave the group where this conversation took place (and I’ve only quoted her words and mine) to post only on her own page and in her own groups.  That’s all fine and good, except for what she publicly said about us:

“I quit a fb cancer group yesterday because they were such a negative energy vortex. If theres [sic] one thing cancer has taught me, its [sic] to avoid energy vampires. It breaks my heart because i [sic] really feel that bathing yourself in negativity is the last thing we need to do to heal, and i [sic] just want to hug them. But its [sic] pretty hard to hug piranhas in a feeding frenzy!”

Is that what I am?  Am I a piranha in a feeding frenzy simply because I don’t want to stand by and see women with cancer bullied by the “positivity” mantra?  I’m an “energy vampire” because I challenge this mindset?  Being realistic about this disease and what it does to the human body is being negative?

I really don’t have a major problem with someone believing that positivity can change their outcome.  However, I do have a problem when that same someone starts preaching it with the same fervor as a religious evangelist that it is the appropriate way in which to live with cancer.  Living positively can most definitely help you get through your days, but it won’t do anything to change the outcome of cancer.

I was saddened to read of the death of another young woman, only age 45, who died of metastatic breast cancer.  She was also determined to live the positivity mantra.  She was convinced that her embrace of both alternative concepts and conventional medical treatments would make a difference in the outcome of her life with metastatic breast cancer, but unfortunately, she is not one of the fortunate 22% who live five years following a mets diagnosis.  She lived 42 months with the disease.  She lived fully and she lived fully on her terms … but she was wrong in believing that positive thinking would extend her life to the decades that she wanted.   She, too, accused those who acknowledge the reality of death due to metastatic breast cancer as being negative, and to use her words, we are “storm chasers instead of cure chasers.”

Fast forward to National Dog Day.  This made up day falls on August 26 and Facebook was filled with pictures of beloved pets.  Kind of fun and cute.  While I’m more of a cat person, I can appreciate a furry family member of any kind.

But then “pink” had to ruin it all.  Susan G. Komen (the organization I seldom mention anymore) had the gall to post a photo of dogs wearing pink bras filled with pink balloons, using the following tagline:  “The dog days of summer are over! Now let’s talk about how cute these dogs are, showing their support for breast cancer awareness! ‪#‎NationalDogDay”

Seriously?  I mean, really?  I am baffled at the joy and delight people get over pinkifying a disease that kills, simply because the disease starts in the sexy breasts. 

The metastatic breast cancer community has gotten to where we tend to ignore Komen and its oblivion and its obsession with pink feel-good shenanigans.  However, this hit a raw nerve and once we heard about it, we made our voices heard in the comments.  Our anger and disgust was quite obvious.

The responses to our comments started to come in … “quit being so dam [sic] bitter” … “I'm a huge supporter of breast cancer awareness” … “This is cute, for me no matter what is in the picture. If it helps to draw any kind of attention to the awareness of breast cancer. I support breast cancer awareness no matter what.” … “Spend less energy on being negative and more on trying to live each day to its fullest.” …

Did you see that?  “Spend less energy on being negative and more on trying to live each day to its fullest.”

Do you know how hard it is to live each day to the fullest, knowing that every single day, 110 people in the United States alone take their final breath as a result of this disease?  Their “living to the fullest” means dying.

I’m supposed to laugh over that?  Or, be “positive?”  Or, stop being so “dam bitter?”  Or, chuckle over dogs in balloon stuffed bras?  Or, look the other way when “awareness” becomes a sex-related game for all to giggle over?

It’s too late for my mother who died of metastatic breast cancer at age 52.  It’s too late for me, diagnosed at age 48, still living at age 52, but living with the knowledge that I’m actively dying.  I DO live each day to the fullest and I don’t need anyone telling me that challenging injustice is spending “negative energy.”

My daughter is 15-years-old.  It’s not too late for her.  The cycle needs to be broken now. I have no desire for her to face this disease when she is 52.   

When I was first diagnosed with breast cancer, I said I didn’t want to be a voice of breast cancer.  I unwillingly became an advocate when diagnosed with mets.  I do wonder if I make a difference, but if the only difference I make is in the life of my daughter, then it is quite enough.  She is the reason I keep shouting into the sea of pink, hoping for change.

Last night, I held hands and cried with a woman in my local metastatic breast cancer support group.  She has decided to stop chemotherapy treatments and hopes to be in some immunotherapy clinical trials that are less toxic.  She has extensive mets, including the rare metastatic occurrence in her bone marrow.  She, too, has a 15-year-old daughter and we wept, not only for ourselves, but for our daughters.  When we say we "fight," we have them as huge reasons not to give up, but also as huge reasons not to pursue treatments that will only extend life in a miserable way.

Every time I turn around, pink is flashing in my face, hiding the river of tears that flow each day as people mourn their loved ones.  The alternate reality of breast cancer is everywhere.  This is what I saw as I drove out of my neighborhood today.