metavivor

30 years

This month, it’ll be 30 years since my mother died. Gotta say, it feels surreal that she’s been gone for this long. My mom, she missed pretty much everything in my life, minus my birth. She was definitely there for that one. After that, my mother missed my First Communion, Confirmation, high school graduation, college graduation, first job, first heartbreak, buying my first house, so on and so on.

She wasn’t there when I had breast cancer. More than anything, I missed her while I was going through treatment. I wanted my parent there so badly. Just because I don’t remember doesn’t mean I don’t miss her and have a mom-shaped hole in my heart, which will never go away.

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This is what she just missed in my life. My two brothers, each of whom have kids, also missed out having our mother in their lives.

Metastatic breast cancer is a thief. It’s a dirty dirty thief. It stole my mother, and I’m doing something about it. Once again, I’m raising money for Metavivor. Every dollar you donate will go toward researching metastatic breast cancer. This year, I decided to run 30 miles this year – one mile for every year she has been gone.

That’s right – 30 freaking miles. I’m doing a marathon and then 3.8 miles before. The date will be November 18 – be there or be square, and watch me hobble toward this bonkers goal of mine.

If you can donate, then you can do so here:

https://secure.metavivor.org/page/contribute/larahuffman30

If you cannot, I understand and would be very appreciative of anyone who can share my story and my link.

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.

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.

Why I Am Still Anti-Komen

In early 2014, I wrote a blog post about why I was against breast cancer juggernaut Susan G. Komen Foundation. It was shared, pinned, tweeted, discussed. While the blog post was shared and liked by many, I don’t know the extent of the reputation hit I may have inflicted upon Nancy & Co. I truly hope I inspired many to donate their money to much more honorable charities.

Well, now I am here to report on where Get Up Swinging and Susan G. Komen still stand. To the surprise of no one, I am very much still anti-Komen, and I do not see that changing any time soon (please see below for a list of organizations doing amazing work).

I do not plan to re-hash all the same reasons I have already cited. That’s the beauty of Nancy & Co: they keep giving us new and improved reasons to despise them and what they are doing to stand in the way of real change. Today would have been my mother’s 69^th birthday. She died at the age of 40 from metastatic breast cancer.

Nancy, Nancy, Nancy

In a November 5, 2015 letter to the New York Times, my favorite former CEO was not happy about a very well-reasoned article, “A Growing Disenchantment With October ‘Pinkification,’”also published in the New York Times, which had valid points of views from those not wearing Pink Ribbon glasses. Did Nancy listen to her critics and go, “Man, we’ve really divided the community for which we are trying to help” Did she do any self-reflection and think, “I need to turn my focus back on the promise I made Susie.”

Of course not. Nancy didn’t address any of these real pressing issues currently happening in the breast cancer community. Instead, all she did was regurgitate Komen’s history and ends her op-ed with the tone-deaf statement: “Pink Ribbons matter!”

The Pink Ribbon has enabled Komen to stage Races for the Cure with more than 1.5 million participants, partnerships in more than 150 countries and the engagement of more than 100,000 volunteers.

Oh boy, Nancy. This is another example of why I think you are an evil woman. You don’t get it, and you don’t want to get it. What about those who are on their fifth line of treatment or waiting to get into a clinical trial in hopes for another six months with their families? All you care about is your money-making Pink ribbon empire and your meaningless ribbon, aka the symbol of your life’s wealth.

There was one point in the article, and it’s an excellent point and one that you would think would make The Breast Cancer Charity go, “Holy shit, we seriously have to fix this!”

For all the awareness, they note, breast cancer incidence has been nearly flat and there still is no cure for women whose cancer has spread beyond the breast to other organs, like the liver or bones.

So, congratulations on patting yourself for your ability to rally others around a cause that has affected so many people. But what about the 40,000 dying every year, a mortality rate that hasn’t changed in two decades?

No, Nancy. Pink ribbons do not matter. The lives of the 40,000+ dying of metastatic breast cancer each year in the U.S. matter. Their partners, their children – the lives of all who have been diagnosed and will be diagnosed – they matter. They should be the priority and Nancy & Co. act as if these valid complaints are mere annoyances, like we are a bunch of Internet loud mouths. The average lifespan of someone diagnosed with stage 4 is 33 months, and a pink ribbon isn’t going to change that. We need change. Now.

2015 marks the first time Komen lets you make a donation to metastatic breast cancer research

This past October marked the first time Komen allowed its donors to allocate where they want their money to go, and research toward metastatic breast cancer was one of the options. It’s 2015, and this is the first time they have done this. Why has it taken so long? Could it be that the Komen push-back from all of us Internet loud mouths made some Komen folks realize that their priorities are jacked up?

However, this option only came about mid-October, and it was initially advertised as an option only available until the end of October! What the deuce? Did I miss the memo that metastatic breast cancer goes away when the calendar reaches November 1?

I guess they listened to others also going, “Um, what? This is only an option until October 31?” and changed their minds. If you make a donation to Komen, you can still choose your donation to go toward metastatic breast cancer research.

Of course, though, this is still Komen, and they will always find a way to take your money, as pointed out by Bravery, Grace and Badassery.

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Does Komen really need that much financial help for its administrative costs that it still insists on taking funds for metastatic breast cancer research? Get the hell out with this nonsense.

This organization has been claiming to be in this “for the cure” for the previous three decades. Shouldn’t research for metastatic breast cancer be the primary focus so many, many years ago? The only type of breast cancer that kills is metastatic breast cancer.

Komen likes misleading statistics

During Pinktober, the Susan G. Komen Foundation posted a pastel, feminine looking graphic with words and numbers together, which would lead you to believe that we are WINNING this fight on breast cancer:

Ugh. Ugh. Ugh some more.

The five-year statistic is bull, it’s just plain bull. It’s a misleading statement for a national organization to make, and all it does is make the general public LESS aware about breast cancer. I’m sure all the Komen supporters saw that graphic on Facebook and said, “Yes, we are winning! Well done, everyone. Well done.”

Folks, if you’re reading this, please know that you can still have a breast cancer recurrence after five years. The cancer doesn’t just peace out once it’s been five years since your initial diagnosis. We have been led to believe that five years is this magical number and you showed cancer who is boss. Realistically, though, you can recur 5, 10 or even 15 years after your initial diagnosis, so you can still die from breast cancer but be counted in this bogus statistic. Theoretically, someone can have an early stage diagnosis in 2012 and have a metastatic recurrence in late 2015. If they are still alive in 2017, then they are counted in that statistic, even if they die on January 1, 2018. Do we tell them as they are dying, “Way to go, Jane, you made it past five years since your initial diagnosis. You are a winner.”

Komen, for the love of Pete, quit sending misleading statements out to the general public that we are winning when the mortality rate hasn’t changed in the previous two decades.

Check out my friend, AnneMarie, crunching some numbers.

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I couldn’t agree with this any more.

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

Komen and its representatives treat metastatic breast cancer patients like a nuisance

Beth Caldwell, who writes over at the Cult of Perfect Motherhood, recently attended the San Antonio Breast Cancer symposium. She wrote about her encounter with a member of Komen’s Scientific Advisory Board:

This week, Kelly Shanahan and I had a conversation with Powell Brown, a member of the scientific advisory board for Komen. We explained to him that the metastatic community is largely dissatisfied with the small percentage of funding that Komen spends on research, since research is the only thing that will save our lives. I told him that they need to change their split between the national and the locals so that more money is available for research. His response was that he doesn’t believe Komen will change that ratio, and that Komen would not begin funding more research until the metastatic community gets behind Komen. He said that if we want Komen to spend more on research, we should participate in their fundraising efforts. He said that more fundraising would mean more money available for research. I told him there was no way that our community could get behind an organization that chooses to spend its money on things other than saving our lives, especially given that there are other organizations that spend a much larger proportion of their funding on research, including BCRF, which now outstrips Komen in dollars spent annually on research. His response was that if that’s how we feel, we should just support BCRF instead. And he walked away.

This is what a national leader for Komen feels about the metastatic patient. We are disposable because we don’t fundraise for them. Do not let them fool you into believing they care about us. Our lives don’t matter to them. And that’s why Komen is irrelevant to us. We must and will save our own lives.

Holley Kitchen, whose direct and moving video went viral, also had an encounter with a Susan. G. Komen foundation representative:

Susan G. Komen Foundation has proven time and time again that it cares about money and donation$, and the lives of those with metastatic breast cancer are secondary. Metastatic breast cancer is what killed Susan G. Komen, a real woman who died way too young. Yet when those with stage 4 have stood up to the organization and its representatives, they are told time and time again that maybe Komen will care if they begin raising money for them.

So what’s the point of my anti-Komen diatribes?

Finally, just because I think Komen is an awful organization that has gone way off tracks, it does NOT mean I don’t want you to stop donating toward breast cancer research and programs. There are so many wonderful organizations that have a mission statement, and (gasp) they are sticking to it.

Why do I keep hating on Nancy & Co.? Welp, I want to highlight organizations that are awesome and making a big roar out there. Please consider throwing your support behind these organizations.

Metavivor – 100 percent of your donations goes toward researching metastatic breast cancer, and they raise money by selling merchandise.

The IBC Network – Did you know that breast cancer can occur without presenting as a lump? Inflammatory Breast Cancer is mostly detected when the cancer is late stage or tragically, stage 4. It’s an aggressive cancer, and it’s definitely not one that’s ever discussed during our annual Pinktober. Terry Arnold over at IBC Network is a tireless advocate.

Met Up – This is an activist group, which was co-founded by women who have metastatic breast cancer. Read their goals, get involved. Help their voices be heard. You cannot call yourself a true breast cancer advocate if you only want to help the “survivors.”

We have so much work that needs to be done. Recently, the New York Times reported on October 29, 2015 that the incidence rate between white women and African-American women are now equal for the first time. Previously, women of color were less likely to be diagnosed with breast cancer, but more likely to die from the disease. Now that the incidence rate is equal, well, does that seem like good news for women of color? Not in the slightest.

Over all, a black woman given a breast cancer diagnosis is 42 percent more likely to die from the disease than a white woman with breast cancer. An analysis of breast cancer mortality trends in 41 of the largest cities in the United States, published last year in Cancer Epidemiology, found that in some cities the risk is even greater. In Los Angeles, a black woman with breast cancer is about 70 percent more likely to die from the disease than a white woman is. In Memphis, black women face more than double the risk. Black women also are less likely than white women are to be given a diagnosis of early stage disease, and more likely to be given a diagnosis with later stage, and less treatable, tumors, according to the report.

Don’t give up on the cause, even though Nancy & Co. have lost their way.

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.

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.

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.

Mets Monday: Susan

Susan

When were you diagnosed and at what age? What type of breast cancer ?

I was diagnosed in August 28th 2013 after a PET/CT scan. I had just turned 43 years. My cancer is ER/PR+ HER2-. I don’t have the BRCA mutation.

What is life like as a metser?

My life in a nutshell is all about managing my pain. It’s a full-time job. I take Exemestane, it causes joint pain. However, for me, that pain has caused inflammation in my joints so I’ve had to be on steroids for my knees and I just had injections in the Bursa’s of my hips. Then there is the radiation damage to my right ribs. The lesion caused pain and I had it radiated. In doing that I now have nerve damage and take Cymbalta to help with that. To further complicate things, I have now fractured that particular rib and the pain of that coupled with nerve pain makes it much more than a fractured rib. The pain makes it difficult to breath and move in certain ways. I also take morphine – long and short acting and Tylenol.

Aside from the pain, I try to concentrate on making memories for and with my son so when he looks back he can recall happy times and events and not a ‘sick’ mom.

What type of misconceptions about breast cancer have you encountered?

I’ve encountered many misconceptions when it comes to breast cancer. The biggest one is that it’s the better” cancer to have and its curable. Curable, it is most definitely not and there is NO such thing as ‘good’ cancer. It all sucks. Personally, the biggest misconception I’ve had to deal with is people saying to me: “You look great! You don’t look sick at all!!” I’m not your stereotypical cancer patient. I’ve not lost my hair and I’ve gained weight from meds, not lost as some do. To look at me, you would never know I was dealing with a terminal illness. But on the inside I’m a wreck. Riddled with pain and exhaustion.

The Pink Ribbon has done such a disservice to the entire Breast Cancer community. Instead of educating everyone on the fact that metastatic breast cancer is possible for 30% of those diagnosed early. By cloaking breast cancer in a cloud of “check your breasts, have a mammogram, get your cancer diagnosed early, make it to 5 years and you have been cured forever.” That is simply untrue and some women have a false sense of hope and are very defensive when the metastatic community comes around. Stage 4 people are breast cancer’s dirty little secret. Which is why there is such a lack in funding for research. If you don’t acknowledge it and continue to deny then it’s not happening.

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

For anyone that wants to help the breast cancer community, I would recommend getting educated by other groups aside from Komen. Organizations like: Deadline 2020, METAvivor and LBBC have good information and are pro-research. Understanding that research is the key to a cure and not running races is a huge step in the right direction.

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

Being an ally to metastatic patients means understanding and educating yourself about ALL the breast cancers out there. Everyone’s breast cancer is individual. It’s not like getting the flu and everyone basically has the same symptoms. My ER/PR+ HER2- cancer will be different from someone else’s triple negative. Everyone has different treatment. It’s not one size fits all. No matter what kind of breast cancer someone has everyone should support and get behind research. Research helps us all.

Second Half Marathon

Today I completed my second half marathon, and I’m very happy to report that I beat my previous time by a lot. My goal was to achieve a time of 2 hours and 10 minutes. I crossed the finish line at 2 hours and 13 minutes. Hot dog! I guess not running with extreme IT band and foot pain really makes a difference.

Unfortunately, I wasn’t 100 percent injury free going into this race. For the past two months, I have been working hard on renovations in my house with an emphasis on scraping glue and wallpaper off walls and ceilings. Hours upon hours of moving my arm up and down or above my head, all sorts of repetitive motions. Right now, I am nursing some pain and numbness in my right shoulder, and sometimes during a run, my shoulder will pop. Dr. Google suggests that I might have some tendonitis in my right shoulder, but I will be seeing an actual doctor to try and figure out what exactly is going on.

I arrived at the race early, and I really didn’t need to, unfortunately. Because I got there so early (well, on time), I ended up waiting around two hours before the race began. It was cold and misting, and I shivered quite a bit. I seriously need to remember to do the trash bag before races in the fall and winter. This isn’t the first time I have came to a race under dressed. One of these days, I will learn my lesson. One day.

Around mile 5, my shoulder felt tight and popped – just once, thank goodness. The bigger issue that came up was the giant blister on my left foot. I blocked out the pain by totally people watching the other runners. “What the hell is she wearing?” “The runners who carry the American flag are bad ass.” “That woman has a shirt saying ‘Run like a grandma.’ I can’t let her pass me…. crap, too late. Go grandma.”

Before my half marathon, I contacted Metavivor to see if I can fundraise on the organization’s behalf. They said yes, and I was able to raise around $700 for Metavivor! I wish I could have raised more, but this won’t be the last time I’ll raise additional funds for them. I want to raise more for them than I ever did for the evil Susan G. Komen Foundation. I’ll right my wrong!

As of right now, I’m sore, hurt but feeling very proud. I achieved a goal, and an amazing organization received money that will go to metastatic breast cancer research. I feel actually more pride in that fact than hitting a PR. I didn’t just write a blog saying: “Pinkwashing is bad, and money should go research.” I’ve written many blogs saying just that, but this time I helped to raise money for just that. All the people who donated to Metavivor hopefully learned more about the organization and might feel inclined to donate to them again without any provocation from me.

I run to help reduce my risk of a recurrence. I run to quiet my demons that like to tag-a-long with me. I run to keep myself in the best shape I can. I run to get those endorphins released into my body. I run to be something I never was before the age of 32: an athlete. I run to hang out with all the awesome and wonderful friends I have made.

I run because I’m not out to prove anything to anybody but myself, and it’s freaking fantastic.