We Need to do Better

Most readers of Get Up Swinging know that my number one priority to my breast cancer is more money for research for metastatic breast cancer. You know, I do it for my mom, who died at age of 40, only two months shy of her 41st birthday. I’ve also had breast cancer myself, and I live with the knowledge that my disease can have a metastatic recurrence any time for the rest of my life.

All of that’s true, but there’s more to why I do what I do.

For my friends who have metastatic breast cancer and young children, I know what it’s like to be that young child. I see the pictures they post, and when I see the early elementary school children, my heart breaks. I see myself in those faces. When you’re a kid, you know something sad and serious is happening but you can’t quite understand actually what is going on with the adults.

I read about my friends’ anguish about just wanting to see their children grow up. I think to myself, “These are the thoughts my mother had as she endured treatment after treatment with three children in elementary school.” I can understand their fear in a way because I am frightened of a recurrence and what is my greatest source of anxiety, is their day to day life.

I know what I’m about to write is going to scare the almighty shit out of my metser friends: I do not have any solid memories of her. I would describe them more like snippets of a dream I’m trying to remember but cannot with any certainty. Years ago, my dad played a recording of her and he had to tell me which voice was hers. I look like her and have the same disease, but I don’t remember her. She’s more a presence and not really a reality. I imagine this was something she feared and did not want to happen, but it did.

There’s a mom-sized hole in my heart that appeared when she died. It’ll never go away. I can fill it up with other sources of love and happiness but it’ll never quite fill the hole left behind by her death. It certainly shaped the person I am now, and I often find myself guided by the thought, “What would Mom would have done?” I also find asking myself when I’m blogging or sending out tweets advocating for change, “I wonder if she would be proud of me.”

When my friends pray for their current treatment to hold out for as long as possible, I think about my high school and college graduations, which she did not see. She did not even see me reach middle school. Those living with metastatic breast cancer want to see their milestones. Research into better treatments is the only way these moms and dads can see the milestones, big or small, happen. Metastatic cancer is smart and cunning, and it’s constantly thinking of ways to make it so the current line of treatment fails for the patient.

Holley Kitchen had a goal, which was to see her youngest son turn 5.  She missed her goal by two days.  Two young boys will be growing up without their mother, and that’s something I know all too well.  Please read Susanne’s blog because her perspective drives home the frustration.

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Credit: Metathriving.com

To my metser friends with children, please know that your children’s memories may fade to what mine are now, but know that they will never forget the love. I don’t remember my mom, but I know she loved me and my brothers more than anything. Your children will know that you did not go willingly and understand the ugly reality of cancer. Please please, do not avoid being in pictures with them if you can help it. You may think you look awful but your children will only see you. Trust me.

I know what it’s like to have cancer and live with the fear of recurrence. I also know what it’s like to grow up without your mother and have no solid memories of her. I would never wish either on my enemy.

That’s why we need to do better. Donate to Metavivor. Don’t buy pink ribbon products. Listen to those who have the most to lose because I promise you, they are the ones telling the truth, not the ones who want to sell tchotchkes.

Pinktober is coming

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In matter of days, October will be upon us once again, and everywhere you look will be draped in pink ribbons and emblazoned with such words, like, “Brave!” “Survivor!” “Sisterhood!” “Strength!”  When you turn on daytime morning television, the networks will be featuring early-stage survivors and once again, ignoring those living and dying from metastatic breast cancer.   If you’re a fan of professional football, the NFL will be featuring bright, attention-grabbing pink gloves, shoes, and T-shirts, all for breast cancer awareness month (never mind the fact that October is domestic violence awareness month, and the NFL should seriously focus their attention on that problem).  Also, the NFL donates “shockingly” little to breast cancer causes anyway.

Friends, if you are like me and recoil at the pink tchotchkes and offensive T-shirts with puns about breasts, then come sit next to me.  We can plug our ears, close our eyes and sing happy songs to drown out all the noise because that’s what this is: noise.

However, if finding a corner to hide from the Pink Ribbon Biz Business until November isn’t feasible due to family, children, jobs, that sort of thing, then there are ways to survive with your sanity intact. Here are some ways you can fight back against Pink Ribbon Crap Spewing Machine, and most importantly, help those with breast cancer who need your support.

  • Research > awareness

By the hammer of Thor, the word awareness has lost all meaning.  It really has.  I would love to find that one person residing in the U.S. who isn’t aware of the existence of breast cancer and ask them where they have been for the past two or three decades.  A cave?  A cabin in the woods?  The fact of the matter is that we are all aware.  In fact, we are all so aware that the general public doesn’t know much about breast cancer except for its existence.  With all the T-shirts, coffee mugs, bumper stickers and the thousands of other breast cancer-related products doesn’t teach anybody anything beyond the fact that breast cancer exists.

Did you know that approximately 40,000 die from metastatic breast cancer each year?  My mom died from this disease in 1987 at the age of 40, so I have been aware of the fact that breast cancer is deadly since I was only 7 years old.

Did you know that men get breast cancer, too?

Did you know that breast cancer can present with a lump and if so, do you know the warning signs to look out for?

Did you know there are multiple subtypes of breast cancer, such as estrogen positive, Her2+ or triple negative breast cancer?

Did you know that a strong family history and/or genetic makes up small number of breast cancer diagnosis?  (American Cancer Society estimates that number to be approximately 5 to 10 percent.)

If you have had a friend or family member go through or die from breast cancer and you want to help in a meaningful way, then support organizations who are researching breast cancer.  Stand Up to Cancer, and the Dr. Susan Love Research Foundation are pretty awesome organizations.  Personally, I support the organization Metavivor since 100 percent of their donations go toward research grants.  I know I have made it very clear why I abhor the Susan G. Komen foundation, which leads me to my next point…..

  • Think before you pink

This is just a great general rule to live by in a world saturated with pink products.  If you are thinking of purchasing a product that says that X amount of proceeds go to X charity, then do a little research before buying the product.   Questions to ask: is this a charity I feel comfortable receiving my money, or would I be better off just making a donation myself and writing off a tax deduction?   You can research non-profit organizations on Charity Navigator.

Susan G. Komen receives 2 out of 4 stars, and as of September 27, 2015, it has an overall score of 78.97.  It scored 70.53 percent in overall financial and 96 percent in accountability and transparency.  Judith Solerno, CEO, received $209,120 in compensation, and Nancy G. Brinker received $480,784 in compensation (more than twice her CEO’s salary?).

Susan Love Research Foundation receives 3 out of 4 stars, and as of the same date, it has an oval score of 85.07.  The foundation scored 80.09 percent in overall financial and 93 percent in accountability and transparency.  Susan Love, president of the organization, received $225,000 in compensation.

Another important question to ask, according to the Breast Cancer Action organization:

What is the company doing to ensure that its products are not contributing to the breast cancer epidemic?

Please see Breast Cancer Action’s website for examples of more than questionable campaigns created in the name of breast cancer awareness.

  • Breast cancer is not a game – it’s a serious, deadly disease.

Weeks ago, it was brought to my attention that a new breast cancer status awareness game began.  I may have sprained an eyeball from rolling it so hard at the stupidity of it this year, something about leprechauns or speeding tickets.  I can’t keep up, nor do I want to keep up with this.  Breast cancer is NOT a game, or a reason to take off your bra for… some reason that still doesn’t make sense to me.

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Whenever I have seen this “game,” I have this conversation play out in my mind:

Me: Friend, I saw that you posted a weird status about getting out of a traffic ticket with a boob, and I know what you’re doing.  Stahp.  Just stahp.

Friend: But… I’m raising awareness for breast cancer?  Isn’t that something you want?

Me: You haven’t raised awareness for anything except that you fall for stupid games and feel compelled to pass it along to unsuspecting folks on your friends list.  You are literally helping nobody by this status.

Friend: You’re an asshole, Lara.

Me: Why that may be true, it doesn’t take away from the fact that you are literally helping nobody by this.  Nobody.  You haven’t shared any facts, links to any good blogs, organizations or call to actions.  Literally nobody has come out of this the wiser.

Friend: [Unfriends Lara]

… and scene.

We can do  this, Get Up Swinging friends.  We can get through this Pinktober, and we will live to tell the tale.

How hard is it to tell the truth?

Not too long ago, a commercial for a local healthcare system in Western Pennsylvania caught my attention for the “statistic” it features at the very beginning.  The commercial is for the healthcare system’s 3D mammography services.

As soon as I read that “99 percent of women will survive breast cancer if detected early,” I shouted, “YOU’RE LYING.”  Unsurprisingly, the source of this so-called statistic is the Susan G. Komen foundation, though I have no doubt that Excela took the statistic out of context to suit its own purposes.  Excela Health wants to get as many women into the doors for its Walk in Wednesdays, and what better way than to keep perpetuating the myth that mammogram saves lives or early detection saves lives.  Who cares if it completely disregards facts, science or context, right?

Let me count the ways in which the commercial is as wrong as Donald Trump as president (seriously, dude is a clown).

1.) Those diagnosed with early stage breast cancer may go on to become metastatic, though the exact number is unknown. 

The Metastatic Breast Cancer Network estimates that 20 to 30 percent of those diagnosed with early stage breast cancer go on to become metastatic.  (Source)  We don’t know this statistic for certain because of this problem, as stated in Laurie Becklund’s op-ed “As I lay dying”:

I say “estimated” because no one is required to report a metastatic diagnosis. Death certificates normally report symptoms such as “respiratory failure,” not the actual disease. We are literally uncounted.

We now know that breast cancer is not one disease. What works for one person might not for another: There is no one “cure.” We are each, in effect, one-person clinical trials. Yet the knowledge generated from those trials will die with us because there is no comprehensive database of metastatic breast cancer patients, their characteristics and what treatments did and didn’t help them [emphasis mine].

 

How can any healthcare network make the assertion that 99 percent of women will survive if their breast cancer is diagnosed given the lack of information?  They can’t, and they should not.  It’s irresponsible for any health care provider to even give the impression that 99 percent of women will survive breast cancer if diagnosed early, especially without giving a time frame (context!).   Ms. Becklund died of metastatic breast cancer (source).

2.)  Excela Health is perpetuating the myth that mammograms save lives.   For years, there has been so much controversy regarding the effectiveness of mammograms.  Do they save lives, or have they contributed to the over-diagnosis of breast cancer?

Back in 2009,  the U.S. Preventative Services Task Force recommended that mammograms should begin at 50, instead of 50, and should occur every two years, instead of every year.

September 23, 2013 CBSNews.com article reported: 

A new study shows that women between the ages of 50 to 74 that get mammography screenings every two years may be at no more risk for advanced-stage breast cancer and at a lower risk for false positives, than those who get tested annually.

The results, which were published on March 18 in JAMA Internal Medicine, follow the 2009 recommendation by the U.S. Preventive Services Task Force that advocated for biennial mammography for women in this age group instead of the previous suggestion of getting screened every one to two years.

However, the study authors pointed out that the original recommendations only looked at age as a factor for influencing breast cancer risk. This new study factored in age, breast density and postmenopausal use of hormone therapy (HT).

According to a February 12, 2014 CBSNews.com item:

A controversial new study has found that annual mammograms may not help reduce breast cancer deaths and may increase the number of women unnecessarily getting treated for breast cancer.  The Canadian study tracked almost 90,000 women for 25 years, and found that having an annual mammogram between the ages of 40 to 59 did not lower the chance of dying from breast cancer more than having a physical examination.

The study, which was published in BMJ on Feb. 11, disconcertingly showed that 22 percent of invasive breast cancers were overdiagnosed by mammography, meaning the tumors would usually have been too small to cause symptoms or become life-threatening.

If different task forces and non-profit agencies cannot even come to the same conclusion regarding mammography, that speaks volumes.    Some might argue that, “Well, hey, the mortality rate is declining, so of course mammograms save lives?”  Well, are mammograms saving lives or is targeted therapies and better treatment contributing to this (source)?

3.) Without context, the 99 percent statistic is just misleading.

The American Cancer Society’s 2013-2014 Breast Cancer Facts & Figures (found here) states:

Based on the most recent data, relative survival rates [i.e., an estimate of the percentage of patients who will survive for a given period of time after a cancer diagnosis] for women diagnosed with breast cancer are: • 89% at 5 years after diagnosis • 83% after 10 years • 78% after 15 years

Relative survival rates should be interpreted with caution. First, they do not predict individual prognosis because many patient and tumor characteristics that influence breast cancer survival are not taken into account. Second, long-term survival rates are based on the experience of women treated many years ago and do not reflect the most recent improvements in early detection or treatment.

The same Facts & Figures document also states that five-year relative survival is also lower among women diagnosed with breast cancer before the age of 40 (yay…. me).   “This may be due to tumors diagnosed at younger ages being more aggressive and/or less responsive to treatment.”  You can’t make a blanket statement about a disease that is so complex.  Cancer doesn’t work that way, and breast cancer certainly does not work that way.  Breast cancer is not just one disease – it’s many.

4.) How dare anyone, especially a healthcare system provider, imply, insinuate or just outright state that those with metastatic disease weren’t proactive in their health or didn’t do all that they can to prevent a metastatic breast cancer diagnosis.   

An estimated 6% to 10% are diagnosed stage IV as their initial diagnosis (source).  What does that mean?  The remaining percentage were diagnosed with breast cancer (stage 0 through III) at some point prior to a metastatic recurrence.  Believe me, they were getting routine screenings (such as mammograms, MRIs and/or PET scans) from their oncologists or other healthcare provider.   After their initial diagnosis, those with estrogen (ER) + breast cancer take some form of hormone suppression medication (such as Tamoxifen, Arimidex and Zoladex).

Lisa B. Adams, who died in March 2015 from metastatic breast cancer, did absolutely everything to reduce her risk of a breast cancer recurrence after she was diagnosed with stage II breast cancer in December 2006.  She wrote on her website she had the following done: double mastectomy, chemotherapy (4 rounds of Adriamycin and Cytoxan two weeks apart followed by 4 rounds of Taxol two weeks apart), Zoladex injections to combat her ER+, PR+ breast cancer and later had a salpingo-oophorectomy (removal of my Fallopian tubes and ovaries) in December 2008.   She received a metastatic breast cancer diagnosis in 2012.

She caught it early!  She.  Caught.  It.  Early.   Many women (and men, of course) caught their breast cancer early, and later died of the disease, and that number is not 1 percent.

Just because someone has been diagnosed with stage IV breast cancer, it certainly does not mean that they did not do everything to prevent such a diagnosis.  Some tumors are more aggressive than others, and can be fast-growing.  Inflammatory breast cancer does not present with a lump.  It is quite possible to have a clean mammogram and then three months later, have a later stage breast cancer diagnosis.  To say otherwise, is downright offensive to those with stage IV breast cancer.

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Excela Health isn’t alone in this ever-present pink-washing cycle, perpetuating myth after myth.  However, given that they are an actual healthcare system, then they should be held to a higher standard.  I would love to think that the hospital I’m going to for my healthcare isn’t producing commercials with such garbage like this.  Breast cancer is horrible enough without adding myths and falsehoods on top of it.  How hard is it to tell the truth?

 

MIA

For the last couple of months, I have been extremely busy with work, photography jobs and running.  During all that, I came across a lump in my abdomen which gave me pause.  I initially felt the lump in April when I was participating at Atlanta’s Ragnar Relay.  The small lump is located near my left ribs, and the very thought of a lump near my ribs worried me.  Still, I gave it a wait-and-see month period because the lump presented without any pain.

After a month went by, I decided to be a good little cancer patient and get the lump checked out.  When you’ve had cancer, you just can’t let unexplained lumps go unchecked.  Unfortunately, my beloved breast surgeon retired last year, which meant finding a new doctor to add to my doctor roster.  In a perfect world, my beloved breast surgeon would stay on forever and ever, but alas. You have to roll with the changes.

I ended up seeing a surgeon that looked to be my age or even younger, which threw me for a loop.  All of my surgeons have so far been old enough to my grandparents.  Grey’s Anatomy would lead you all to believe that all surgeons look like Patrick Dempsey or Katherine Heigl.  In my experience, all the surgeons I have had are more like an episode of Golden Girls (without the sass of Sophia, unfortunately).

The surgeon felt the lump and immediately told me that the lump was just a lipoma (i.e. a benign tumor of fatty tissue.).  Oh thank God.

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During that week of my appointment, I felt anxious and worried.  I also felt angry.  Why must my body keep forming unexplained lumps?  Is that my super power after all this radiation and chemotherapy?  More lumps and tests to see what my insides just formed now?  Why can’t my body flourish and create actual life, not just the occasional tumor?  I can run a dozen half marathons, but now and then, I’m reminded that life isn’t always fair and my health could possibly be taken from me.

I consider myself blessed and very lucky that this turned out to be nothing.  If the lipoma gets bigger and causes discomfort, then I can have it removed.  It’s been almost five years since my diagnosis, and I have continued to remain no evidence of disease.  I thank my lucky stars every day, and when the next scare comes along, I will deal with that one, too.

In the meantime, I want to focus on those who haven’t been as lucky as me.  Those with metastatic breast cancer need to be at the forefront of every conversation when it comes to breast cancer.  How can we help those living with stage 4 to keep their disease at bay and live years without any disease progression?   Every year, approximately 40,000 women (and men) die of this disease, and that needs to change.  Pink is not a cure, and 108 die every day.

Mets Monday: Susanne

For today’s Mets Monday, let me introduce you to Susanne.  This is her Facebook page and her GoFundMe page.

When were you diagnosed (initially and then at stage 4, that is, if you were not stage 4 off the bat) and at what age?  What type of breast cancer (i.e., er+ or triple neg)?

I got the call that the biopsy came back positive for cancer on November 19, 2013. A couple weeks later, a PET scan and a second biopsy confirmed it was already metastatic to the liver. I’m ER/PR+, Her2-, invasive ductal carcinoma.

I was 39 years old.

What is life like as a metser? 

Not easy. Coping with this for me is a weird dichotomy of knowing I’m going to die, and hoping I’m going to live. I wrote a blog post a while back comparing it to a Hail Mary pass in a football game. You’ve got four seconds left on the clock, and you know you’re going to lose the game, but you still keep your butt parked on the bleachers because those Hail Mary passes can and do sometimes happen in those last few seconds.

I spend time getting things ready for my funeral, arranging a pre-pay insurance, writing the obituary, figuring out what hospice I want to use, that sort of thing. It feels like the more I plan and get out of the way, the freer I am to live my life and not worry about the details. I plan for my death so I can live.

I don’t want to die. Last night I had a sobbing, screaming panic about reality. I don’t want to die. I want to be able to stay here forever, I want to grow old with my wife, I want to see the first humans on Mars, I want to be a little old lady in a nursing home someday weirding out the CNAs and decorating my room with print outs of cat macros. I don’t want to die. It’s not fair. I have so much I wanted to do, so much I still want to do. It’s not fair.


Would you say the general public as a whole knows a lot about breast cancer?

No. They know it exists, but not much beyond that. There is awareness, but pink has normalized breast cancer to the extent that we no longer think of the dying. People are aware that breast cancer is a thing that happens, but nothing more. It’s assumed that people don’t die from breast cancer anymore, that there’s a cure now, it’s just an easy rite of passage of womanhood and it’s nothing to worry about anymore.

It’s not even a chronic, treatable disease. It’s killing us and it’s not slowed down in decades. It’s not a pink, pretty, sexy, easy disease with a free boob job. We’re dying. And the general public doesn’t really know nor care.

 What does “breast cancer awareness” mean to you?

It means making the public aware that pink ribbons don’t save lives, early detection doesn’t “cure” breast cancer, and that if you have breast cancer, you’re at a risk of metastasis, period. It’s not a disease that strikes older women; young women can get it too. It’s not even a woman’s disease, men get breast cancer, and the general public isn’t aware of this. There’s awareness of a generic concept of breast cancer, what we need now is awareness of the reality of this disease. That’s seriously lacking.


What type of misconceptions about breast cancer have you encountered?  Has anyone ever said something ignorant to you, obviously not knowing what stage 4 breast cancer is?

I’ve been told that breast cancer is a ‘rite of passage’. Someone expressed relief when they found out I had breast cancer, because it’s one of the “good ones”. I was told “your hair’s growing back, though. That’s good, right?” when I was trying to explain that I was never going to be out of treatment for metastatic breast cancer.

What makes you happy?

My wife, primarily. This has been incredibly hard on her, and we have so many regrets and fears and anger about having our years together robbed by this. She is everything to me. I fight so hard against this disease because I want to stay with her forever.

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What advice would you give someone who truly does want to help the breast cancer community, especially those with metastatic breast cancer?

Pay attention to where the money goes. Don’t assume that because it’s a pink ribbon, it helps anyone. There’s a multi-million dollar merchandising industry being built on the backs of the dead and the dying. Be aware of how little goes to metastatic research. Be aware that you’re not “in the clear” at any magical point. A cure for metastasis is a cure for you too. Be aware that breast cancer is being normalized and sexualized and turned into a profit machine. You are worth more than your breasts. Be aware that mammograms are not perfect. For younger women, they’re often ineffectual due to the density of breast tissue. Even for older women, they might not always show up on scans.

We deserve more, we deserve better treatment, better awareness, better research into a valid, viable cure which will benefit all stages. The death rate from metastasis has not changed over the last 40 years. Early detection isn’t saving lives. We need funding into research, and we need people to be more aware of what their dollars support.

But perhaps the most important thing is to let us have our voice. Don’t hush us up or put us in the corner and give us bare bones acknowledgment because we’re your worst nightmare. We’re dying. Don’t begrudge us our remaining time to have a voice to speak out against this disease. Don’t tell us we’re wrong when we point out the stats and the funding. Don’t defend those who want us to be quiet. You might find yourself walking in our shoes. If you don’t want to be where we are, let us try to make history and give us enough awareness for a shot at finding a cure.

We’ll be quiet enough when we’re dead.

Please visit METAvivor and Live from Stage IV for more information.

Mets Monday: Carolyn

Everyone, please meet my friend, Carolyn.

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When were you diagnosed and at what age?  What type of breast cancer (i.e., er+ or triple neg)?

On May 1st, 2009, I was diagnosed with stage III, er+ pr+ HER2+ (or triple positive), breast cancer at the age of 48, a few days before my youngest son turned sixteen. Due to the extreme growth of the breast tumour and other symptoms prior to the mastectomy it was speculated that I had inflammatory breast cancer but it was not noted as such.

On July 29th, 2012, at the age of 51, I was diagnosed with metastatic breast cancer (stage IV) after it was finally determined that the pain I had been in for many months was due to a breast cancer tumour destroying my C6 vertebra. This fact was missed by radiologist(s) in two CT scans until a neurologist found it while reviewing my older scans.

Inflammatory breast cancer hit my remaining breast in October, 2013. While the pathology remains triple positive, it can’t be said with certainty that it was due to metastasize or a new occurrence.

What is life like as a metser?

Difficult, joyful, exhausting, uncertain, some days more painful than others, some weeks I can’t manage the dishes or get off the couch, some days I can dance. For each person living with MBC there is a unique combination of conditions, variables, treatments, response, and progression of disease. I’ve yet to embrace the term “new normal.” There is nothing normal about life with metastatic cancer, new or otherwise.

For me, life happens in the spaces between my examinations, blood work, and IV infusions. Every three months I have CT scans to head, neck, chest and abdomen, which includes IV contrast injections. Every two months I have an echocardiogram to determine how my heart is coping with my infusions of Herceptin, which is much preferable over the many muga scans I had during my first year with that drug. Full body bone scans, MRI’s, and x-rays are intermittent.

While life happens I’m plagued with constant neck spasms which cause my head to move to the side repeatedly during the day, a distended, firm carotid artery, painful cramping in my chest, neck and esophagus, and an uncomfortable, often painful, upper spine due to spine surgery and the titanium cage, rods and screws. When I yawn, I can’t swallow or breathe well until I massage a neck cramp away.

The treatments and surgeries I’ve undergone over the last seven years have taken a toll. I have peripheral neuropathy, my extremities are numb full time. I’m prone to trip as I can’t feel my toes. My hands wear invisible gloves that I can’t remove. Fibrosis (scarring) and adhesions are also a pain in the neck, chest, ribs, back, shoulders, etc. Two of my bottom teeth are hanging on by a thread, and some of my upper middle gum came off during my neck radiation. There are other ongoing and permanent side effects as well, including cognitive decline.

My favourite moments: Reclining in my lazy boy to relieve symptoms while chatting with my youngest son and listening to his favourite music. When my two older sons and daughter-in-law come to call. Tea with my systir and niece. Laughing with my family during our visits, dinners and events. Tending and loving my eight month old grandson, a joy I didn’t think I’d experience once diagnosed with metastatic breast cancer. Walking with my friend and her dog.

When my sister, brother, sister-in-law, and I get together with our children and our Mom, breast cancer is no longer so very present in my mind. It took me almost six years to get to this point.

The most disconcerting issue I find is the uncertainty. We just don’t know how long we have left to live after a metastatic breast cancer diagnosis, when we will progress, what – or if – treatments will be available when we do, nor what type of death we can expect. We could live the median of two to three years, or we could be an outlier, that infinitesimal percentage of people who live 8, 10 years, or longer. It messes with your mind, your sleep, your resolve.

What type of misconceptions about breast cancer have you encountered?  Has anyone ever said something ignorant to you, obviously not knowing what stage 4 breast cancer is?

When you have breast cancer, you are never cured, no matter what stage you were originally diagnosed. There is no cure. If you were not diagnosed with MBC from the start, Metastatic (aka stage IV) breast cancer can become your reality at any time; a year, a few years, or many years after your original early stage diagnosis. I have learned that many people, with or without breast cancer, are not aware of this fact.

I’m continually told, “you beat it once, you’ll beat it this time!” No. I will not. Nor did I beat it the first time. It is not under my control. We manage it, while it grows in our bodies and attacks our bones, our other organs, our brains, until we can’t manage it any longer.

I find it is an innate human desire, for most people, to comfort and somewhat coddle those who are going through early stage breast cancer. While encouragement, support, and hope is most certainly warranted and necessary, I feel that the hard truths must be given as well. The misconception being, that we need to be coddled. I don’t believe we do.

One day at the grocery store a young man at the check out asked me how I was. I said that I was fine, that particular day I was telling the truth even though I was in pain. He then went on to inform me that he had a cold, his girlfriend left him, and he hated work. I don’t know what possessed me, but I asked him, are you dying? He looked a little stunned, and didn’t respond, no doubt thinking I was off my rocker. I couldn’t believe I had asked that, perhaps it was due to large pink sign above his till, and the many products with pink ribbons that surrounded me. I then explained that I had metastatic breast cancer, stage IV, and that it was terminal, it will kill me.

He said, “No one dies of breast cancer anymore, my Mom died of it, but they fixed it.”

My heart sank, for more than one reason.

How do you think the Pink Ribbon culture has harmed those with stage 4?

The Pink Ribbon culture has overwhelmed us with profit minded individuals and corporations who claim to be altruistic in their goals. I’m sure most people are quite sick of pink and zone out when pink is shoved in their face, not just during Pinktober, but all year long. I know I am. Quite sick of it. But breast cancers association with pink is ingrained in our lives and I doubt it will be going anywhere soon, and I’d like to see the focus on donations and fundraising shift almost fully towards research and education.

Mainstream media could help change direction, but I’m afraid that with the pink, comes the desire to show the happy survivor, the hope and the dreams, rather than the approximate 30% of us with breast cancer who will become metastatic and die. This attitude has been slightly changing of late, let’s hope the momentum continues.

The pink ribbon, originally salmon coloured, was introduced to create a much needed awareness of breast cancer. And while breast cancer awareness is still important in many countries, awareness of metastatic breast cancer is sorely lacking in all. The messages from these awareness campaigns have sanitized our disease, not to mention partially obliterated the reason behind the original intent of the pink ribbon movement. Pink ribbon campaigns in the marketplace are quite lucrative, a great way to bring in consumer dollars for any end product, from toiletries and pink hammers to pornography. But where are those funds going? We need donations to count, research is key.

Recently the Susan G. Komen corporation put out a new campaign using a woman with stage IV breast cancer as their highlighted warrior. I’m encouraged that they are no longer hiding stage IV in the back room, however, the message is wrong. Again.

“Don’t let breast cancer win.”

No one living with metastatic breast cancer has a choice in the matter, we aren’t losers, but breast cancer WILL kill us. The statement on Komen’s stage IV survivor ad, as well as others I’ve read in various promotions, place the blame directly at those of us living with this disease. It’s our fault if we die, we didn’t fight hard enough. That’s the message. It’s insulting, insensitive, inappropriate, and complete bullshit.

In the US the message that seems most prevalent in the pink ribbon campaigns is that early detection saves lives. The truth is, early detection does not prevent metastases. Plain and simple. If you have early stage breast cancer, it can come back, metastasize, turn your life upside down and eventually cause death. The market seems saturated with misguided information and greed, the focus has been corrupted, change is needed.

I personally stay away from anything that says “Komen.” Their message, their million dollar plus legal fights to keep “for the cure” to themselves, and the questionably high salary that the their founder takes home, are all concerning. It is my personal opinion that they are the bully foundation for what is known as the bully cancer. And why are we known as the bully cancer? Probably due to the pink ribbon culture.

There are other organizations that direct a much greater percentage of funds towards research verses awareness. The Canadian Breast Cancer Foundation is one of those organizations, and is transparent regarding fund allocation.

METAvivor‘s mission is quite clear, 100% of all donations goes towards metastatic research. Please check them out if you want more information.

Breast cancer doesn’t kill you until it metastasizes, yet stage IV seems mostly ignored within the Pink Ribbon culture. At least that’s how I felt a few years ago and I don’t feel all that differently right now. I wrote about my views in two posts, starting with Fifty Shades of Pink, back in 2013. That post will link to the next, my rant. At that time, I did not think I’d still be alive come 2015.

No amount of positive thinking is going to change the outcome of metastatic breast cancer. Research will.

What advice would you give someone who truly does want to help the breast cancer community, especially those with metastatic breast cancer?

Educate yourself, share the reality of breast cancer, share the truth of metastatic breast cancer, and don’t be afraid to talk with those of us living with MBC.

Be mindful that many of us, especially those with mets, don’t care about saving the ta-ta’s, boobie’s, the girls. Many of us don’t even have breasts. We care about saving lives. Life goes on after your breasts are amputated. We want parents to raise their children and watch their children grow, couples to enjoy the years together that they hoped for. We want to enjoy our lives and live without debilitating side effects, no matter our ages.

Many of us are insulted by the facebook games and various campaigns that go around claiming they are spreading awareness of breast cancer. One example was the popular no-bra day. I feel those games are trivializing our condition, and continuing to sexualize our disease. Every day is no-bra for some of us. This type of activity is not helpful. Those who play the games, and those who see them, are most assuredly fully aware of breast cancer.

Please visit these organizations for information on breast cancer and MBC:

Canadian Breast Cancer Foundation
Breast Cancer Consortium
BCSM (Breast Cancer Social Media) Community
LBBC (Living Beyond Breast Cancer)
MBCN (Metastatic Breast Cancer Network)
METAvivor

How can someone diagnosed with early stage breast cancer be a good ally to those with stage 4?

Once immersed in life with metastatic breast cancer I quickly became knowledgable with respect to it’s randomness and ultimate end. I then realized that when I was diagnosed and dealing with stage III breast cancer I didn’t have a clue about metastatic breast cancer. I had pamphlets, and one book that my original oncologist contributed to, which I read, though I’m not sure the very real possibility of becoming metastatic sunk in. I’m going to be just fine! I’ve had my surgery and treatments, I’m outta here!

I’d like to think that landscape is changing, people with early stage disease are better informed, personally informed, in your face informed, and not just handed a few things to read. But, it’s probably more likely that because I’m now fully immersed, I am fully aware, and because those I write and talk with are fully aware, I often assume others are as well.

We have work to do. Education is so important. The reality is hard to swallow but necessary to accept. That’s how change happens.

Keep in mind that those of us who were not diagnosed with stage IV from the start, once walked in your shoes. Living with stage IV, metastatic breast cancer, is in some ways similar to going through the various treatments for early stage breast cancer, two differences being that our treatments are forever, and our condition worsens until breast cancer kills us. There are obviously other differences, but hopefully my point makes sense.

Please remember that your breast cancer can come back at any time, I’m not trying to be a fear monger and certainly don’t wish you to live with constant dread, but I feel it’s important to remain realistic and vigilant.

Metastatic breast cancer is a widespread global killer of both sexes, young, old, and in between. In 2012, 524865 women and 3324 men died of metastatic breast cancer. Many MBC deaths go unreported as such, therefore the true numbers are higher.

If you wish to help us be heard, educate yourself about Metastatic Breast Cancer (stage IV), don’t pretend it doesn’t exist, and help us spread it’s reality.

Change is on the horizon! I might even live to see some of it. That’d be cool.

I’d like to thank Lara Huffman for allowing me this opportunity to share my views and concerns with respect to metastatic breast cancer.

You can read my story, rants, and musings at Art of Breast Cancer and if you are so inclined, follow me on Facebook, twitter, google+, and pinterest.

Fare thee well, Lisa

A prominent voice in the breast cancer community, Lisa Bonchek Adams, died of metastatic breast cancer last week.  I followed her on Twitter and Facebook, and I read as much of her writing as I could.   She was initially diagnosed with early stage breast cancer.  She underwent all the treatment for early stage breast cancer, including having an oopherectomy.    Lisa writes about that here.   She did everything she was supposed to do treatment-wise, yet she still fell into the 30 percent category of those whose breast cancer recurred stage 4.

As someone with early stage breast cancer, her story is bone-chilling, frightening to me.   My biggest fear used to be developing breast cancer like my mom, and that’s happened.  My biggest fear now: my breast cancer coming back stage 4, and I die at a young age just like her.  Stage 4 is the nightmare.  It’s my nightmare, and at the same time, it’s made me beyond appreciative for my current good bill of health.  I feel a heightened sense of panic and anxiety every time I visit with my oncologist and that won’t ever change.

I won’t turn my back and pretend that metastatic breast cancer doesn’t exist because for so many, my nightmare is their reality.  I have come to accept that this may happen to me, but I won’t ignore the fact that approximately 40,000 die of this disease every year.   I won’t ignore those like Lisa, and so many others who died of a disease packaged up in a prettysexycool pink exterior.

Lisa did not subscribe to the Pink Ribbon Culture.  She was critical of Komen.  She railed against the Pink Ribbon Culture with open, honest talk about the disease, and its effects.  She talked openly with her three children about her disease and its ultimate outcome.  Since I barely remember my mother because my parents shielded me from the last six months of her life, I appreciated Lisa’s honesty with her children.  I wished my parents hadn’t shielded me so much, then perhaps I would have a memory of my own mother.

Lisa also didn’t subscribe to the cancer pep talks, and in a May 2013 Salon article, she commented:

“I don’t need to be told to fight the good fight to beat it or the key is to just stay strong or that it’s mind over matter.  You force me to assert my knowledge, insist upon my diagnosis, explain the desperate nature of my disease, spend my time defending my sentence.”

After her death, a friend of mine with Stage 4 breast cancer posted something Lisa wrote entitled “When I Die” on Facebook.  Here’s a snippet from that post:

Don’t try to comfort my children by telling them I’m an angel watching over them from heaven or that I’m in a better place:

There is no better place to me than being here with them.

They have learned about grief and they will learn more.

That is part of it all.

(For all those who believe that a positive attitude is all you need to beat breast cancer, how would a positive attitude ever trump a parent’s desire to see their children grow up?  Riddle me that, Batman.)

While I often refer to my mother as my guardian angel, the second line really punched me in the gut: “There is no better place to me than being here with them.”  Oh my heart, it hurts.  As a woman whose had breast cancer and the daughter of a woman who died of the same disease, I gained insight into what my mom had to have been feeling as she knew her time was limited.

If you, dear Get Up Swinging readers, want to help those with metastatic breast cancer and honor Lisa’s memory, then you can do so here.

Lisa didn’t lose her battle or a years-long fight.  She died of metastatic breast cancer at the age of 45.  The metastatic breast cancer community lost a powerful voice and advocate, but her words will live on.

Breast cancer is NOT a game

I generally don’t participate in these BUT… Haha, you should not have liked or commented. Now you have to pick from one of these below and post it as your status. This is THE 2015 BREAST CANCER AWARENESS game. Don’t be a spoil sport, pick your poison from one of these and change your status, 1) Damn diarrhea 2) Just used my boobs to get out of a speeding ticket 3) How do you get rid of foot fungus 4) No toilet paper, goodbye socks. 5) I think I’m in love with someone, what should I do? 6) I’ve decided to stop wearing underwear 7) it’s confirmed, I’m going to be a Mommy/Daddy! 8)Just won $900 on a scratch card. 9) Its final, we’re moving to Mexico to be beach bums! Post with no explanations.

Oh dear goodness.  Not this bullshit again.  Why is this still a thing?   Why hasn’t this “game” been killed in a fire? You know what I want to do whenever I see this form of slactivism in my social media news feeds.

hojkokfijt0ujov9lobq

Breast cancer is not a game.  Repeat after me: it is not a game.  It certainly is not a shitty game which tells you absolutely nothing about breast cancer.  For real, what does that game above tell you about breast cancer?  After reading that, did you learn anything about breast cancer that you didn’t know before?  I mean, it’s telling you there’s awareness going on.  What are you aware of now that you weren’t before?  If you didn’t know that breast cancer existed before coming across the 2015 BREAST CANCER AWARENESS GAME, then please give me the address of the rock you were living under.  Were you living in a land free of pink ribbons?  (Take me there!)

You know what I think whenever I see this pop up in any of my news feed: you could care less about breast cancer, and I need to unfriend you right the hell now.  I’m not even kidding.  If anyone who knows me  and what I have gone through (i.e., lumpectomy, chemo, radiation and double mastectomy) can participate in such a game and not realize how demeaning and offensive this is to anyone going through breast cancer treatment.  I never saw what I went through as some cutesy game, and I certainly don’t view my mother’s death from this disease as LOL.

Lisa Bonchek Adams, who has stage 4 breast cancer, wrote this spot-on piece entitled “Breast cancer is (still) not a Facebook game”:

The above instructions are not awareness. This is offensive. Breast cancer is not a joke, awareness does not come from sharing the color of your underwear or your marital status (the whole “tee-hee, wink-wink” attitude adds to my disgust). Even if it ended up on TV, that still would not be educating people about breast cancer they didn’t know before. All it does is show the world that lots of people are willing to post silly things as their status updates.

She also wrote:

Education underlies awareness. To even call something a game and honestly believe it’s doing anything to help any aspect of this disease is delusional.

While you’re playing games, (mostly) women are dying of metastatic breast cancer.   We have been running and racing for a cure that has not happened.   Where’s the cure?  The below infographic is proof of how little most people know, despite all this awareness.

Metastatic_Breast_Cancer__Infographic

50 FREAKING PERCENT believe that breast cancer progresses because patients either did not take the “right” treatment or preventative treatments.  Are you kidding me?   That is unacceptable.  Is this why we treat those living and dying of metastatic breast cancer as some dirty little secret nobody should talk about because most people think they brought it upon themselves?   That is so far from the truth that it should be filed under fiction.

Did you know that 30 percent of those diagnosed with early stage breast cancer have a metastatic breast cancer, i.e., the breast cancer that kills?  WAS THAT FACT RELAYED TO YOU WHILE YOU’RE PLAYING THE GAME?

Awareness does not save lives.  It doesn’t.  Despite recent media articles telling you that breast cancer rates have dropped, don’t believe the screaming headlines.

Frankly, I’m tired breast cancer being portrayed as the feel good cancer and being held up as a shining example for early detection which works sometimes or most times but not all the time and that part of the messaging is conveniently left out of every discussion about early detection. It’s buzzkill, it detracts from the message that mammograms are helping save lives. Mammograms are detecting cancer earlier and earlier thanks to the constant improvements being made in the imagine, but early detection is just that. Early Detection. Early detection is not a guarantee.

If you or anyone really want to help, tell these Facebook game players to sign this petition.   “I ask that Komen commit at least 50% of total donations to medical research and innovation rather than to awareness and education. I request all other breast cancer non-profits do the same.”  Donate to Metavivor.  Do something meaningful.

Just don’t play these games.  Please.  Can you really play a game making light of the deaths of so many?

Mom10

1 in 8

During this year’s Pinktober, did you happen to come across the “1 in 8 women will develop breast cancer in their lifetime” statistic?  Here are three screen caps with this statistic:

1in8-breastcancer.org

Now from the American Cancer Society’s website:

1in8-cancer.org

A Komen affiliate website:

 1in8

I actually learned recently that this 1 in 8 statistic is actually a teensy bit misleading.   Lifetime risk isn’t the same of your actual risk based on your age.  You know what blows my mind?  I found actual scientific information explaining this statistic on Susan G. Komen’s website (I know, knock me over with a feather):

Women in the U.S. have a “1 in 8” (or about 12 percent) lifetime risk of getting breast cancer [4-5]. This means that for every eight women in the U.S. who live to be age 85, one will be diagnosed with breast cancer during her lifetime.

Absolute Risk Komen

Source: Komen

So next time you come across the “1 in 8 women will develop breast cancer in her lifetime,” keep in mind the second part of that statement: “who live to the age of 85.”

I don’t know why charities and organizations use that statistic so much and with little explanation.  Maybe they want to scare people into thinking breast cancer is going to happen to everyone or maybe they don’t really understand the lifetime risk vs. absolute risk?

My friend AnneMarie, over at Chemobrainfog, wrote:

One in eight is a good springboard for a fundraising campaign.  It makes for a great way to terrorize those who do not understand that the number applies across your entire lifetime and it increases with age.  As you are seated around your table with eight family members of different generations or eight close friends, don’t try to figure out who, unless you also incorporate WHEN into the equation.

There are certain factors that increase your risk of developing breast cancer, and I fell in several of those categories: family history, dense breast tissue, certain benign (not cancer) breast problems and not having children (and related to that, not breastfeeding).  No doubt that these factors definitely increased my risk more than the 0.4 percent figure stated above.    Plus, now that I’ve had breast cancer, I’m also at an increased risk for developing breast cancer again.  Since treatment ended, I have made changes to my lifestyle, such as running and not drinking alcohol, among others, to minimize my risk because I never ever want to go through that again.

Cancer can often feel like a numbers game, although many doctors and specialists in the field will emphasize that you are an individual, not a stat.  When you fall on the bad side of these statistics, these numbers almost seem cruel.  I had less than one percent chance of going into anaphylaxis during chemo, yet that happened to me.  Cancer is definitely not something I ever wanted to be unique at.

I truly believe it’s important for us to know our risks and what we can do to minimize our risks for developing breast cancer.   First, we need to fight through the Pink Ribbon rhetoric seemingly designed to scare the general public with statistics without little or no context.