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.

CYnBPjGU0AAiLWS

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 69th 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?

image2

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.

image1 (1)

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:

image1

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.

Capture

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:

image3

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.

Pinktober is coming

download (1)

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.

giphy (1)

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.

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.

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.20150223315713253

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.

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

Positivity Police

I will be the first to admit that when it comes to cancer, I am probably not the most positive person.  I never viewed my two years of treatment as some “journey,” and I absolutely despise those who call cancer a “gift.”   (If you think cancer is a “gift,” then you were on the receiving end of some pretty crappy gifts in your life.)  I would go as far as to say I’m a cynic and realist about cancer, but not a Debbie Downer.

debbie-downer

That’s not me, I swear!

The pressure to remain positive during cancer treatment starts at the very moment you are diagnosed, and you are relaying this information to friends and family.  I tried my absolute hardest to maintain this mindset during treatment, but it didn’t last long. Maybe a couple of months?  When you’re dealing with stress from treatment on top of family relationships being tested and broken, it takes a toll.  You can only smile so much as you endure chemotherapy and bad news after bad news.

Forced-Smile

Author Barbara Ehrenreich (who also had breast cancer) wrote:

The effect of all this positive thinking is to transform breast cancer into a rite of passage – not an injustice or a tragedy to rail against but a normal marker in the life cycle, like menopause or grandmotherhood. Everything in mainstream breast cancer culture serves, no doubt inadvertently, to tame and normalise the disease. Indeed, you can defy the inevitable disfigurements and come out, on the survivor side, actually prettier, sexier, more feminine. In the lore of the disease – shared with me by oncology nurses as well as by survivors – chemotherapy smoothes and tightens the skin and helps you lose weight, and when your hair comes back it will be fuller, softer, easier to control, and perhaps a surprising new colour. These may be myths, but for those willing to get with the prevailing programme, opportunities for self-improvement abound. Breast cancer is a chance for creative self-transformation – a makeover opportunity, in fact.

When asked what would he say to someone who credits positive thinking to their survival, psychologist Richard Sloan commented in a November 27, 2011 CBSNews.com article: “I’d say, I’m very happy for you, I’m glad you survived. But for every one of you who said you were going to fight your way out of it, there are probably dozens of people who said precisely the same thing and didn’t survive.  One person’s anecdote doesn’t make evidence.”

Exactly!  Those who died of metastatic cancer weren’t all negative Nancys or Debbie Downers.  A lot of lovely people with amazing attitudes died of cancer.

I would hope that anybody going through cancer would feel allowed to feel whatever they are feeling.  You should silence those voices and pressure around you insisting that you must remain positive, and be authentic to yourself.  If you’re feeling down, that’s okay.  If you’re feeling awesome because it’s an off-chemo week, then masel tov!  I don’t want anyone to put on a fake smile and pretend to be hunky dory if you’re sad.  It’s okay – cancer sucks.  If it was easy, then, well… who the heck ever said cancer was easy?

A fellow blogger and I discussed our hesitation to even write about the pressure to remain positive during and after treatment for a very messed up reason.  What if we voice these not-so-popular opinions and then later have our cancers recur, then will people think, “Yeah, she brought this upon herself by being so negative.”  If my cancer recurs next year or 10 years from now, am I going to be blamed for it because I didn’t don a pink boa and a punny T-shirt about breasts?

If someone you love is going through cancer and you’re not sure how to act or speak to them about the disease, just know your audience.  If that person loves the battle metaphors and fighting persona, then go nuts.  There are a lot of merchandise you can buy for them.  Boy, is there ever.

However, if your loved one is someone like me, someone who talks about his/her experiences candidly and without putting on that Cancer Brave Face, then just listen to them.  Empathize.  You don’t have to put on your brave face, either.  It’s okay to just hang out with someone.  During my treatment, I became super skilled at just hanging out because I couldn’t really do much else.  Be there for your friend and family, and never put your need for them to act like everything is fine because cancer scares the shit out of you over their own well being.

Whatever you’re feeling, it’s okay.

Stories

Recently, I began asking my dad more about my mother’s family.

Even though my mother has been gone since 1987, my dad is still an amazing source whenever I’m craving insight into her family.   He has been and still is the go to guy when I want to know anything about my grandparents or mother.  I’m pretty sure if my dad ever took piñata form, and you knocked him open, nothing but stories would come falling out.  I may look exactly like my mother, but my personality is straight up from my dad.

I have written before about my grandmothers.  This time around, I wanted to dig a little deeper about the one who I barely remember or who I think I barely remember.  (Does remembering a deep smoker’s voice telling me to give her “some sugar” count as a memory?)  Who is my mother’s mother?

When I googled my grandmother’s name, I found out my great grandparents name, which I never knew before.  But I don’t want to just create a family tree, look at all the filled-in names, say, “I’m done,” and then pat myself on the back for doing such a splendid job.  I want to get to know these names, not just where they place in my family tree.

During my great family google, I even uncovered a great aunt’s name, which I had never heard (or maybe I had, but it had been so long that I had forgotten).  According to my dad, my great grandfather and his family arrived in Texas in a cover wagon.  My mom’s cousin told me that my great aunt was a loving woman who greeted beloved family members by kissing them and exclaiming, “I love you!”  Another cousin of my mom’s said that my mother made the best lasagna.

See, I did not know that.

My grandmother died when I was 3 years old of lung cancer, and my mother died when I was 7.  I’m not that close to my mother’s siblings since I have never lived in the same state as any of them.  I have these family members out there who I don’t know, and who don’t know me.  Sadly, I have these family members I will never know.

Every time I look at this photograph of me sitting next to my grandmother, where my face is so done up with so much makeup that I looked like a toddler beauty queen, it makes me laugh.  Man, she must have had a good time painting my little toddler face.   I wonder if she would have found my anti-girly girl personality during my teen-aged years to be unbecoming and would have had talks with me about how I could pretty up my appearance.

While pictures are great, stories are something else.  When I hear these stories, no matter how insignificant they might be to the story teller, my grandmother and mother come alive.  They become real people.  Any stories about these women slowly fill in giant holes in my heart that cancer created.  I don’t care if the stories paint either woman in a less than flattering light.  They were real life humans once, before cancer came along, and they had flaws just like everyone else.

I am third generation cancer.  I am sad that I never got to hear stories from my grandmother about what my mom was like as a child.  I have certainly never dreamed of shopping for wedding gowns since my mother and grandmother are no longer here.  Cancer took them from me, but lately, when I learn more about them, they are more than the disease that took their lives.  They are my family, and I know that I come from a line of women who will always be more powerful than cancer.

Wedding2

Diem Brown

The recent death of Diem Brown, and the headlines regarding her death from cancer made me really think about the over-usage of the battle and fighter metaphors when we discuss someone’s death from cancer.   If you do a google news search for Diem’s name, then pretty much all the headlines talk about her losing her fight or battle.

Anyone who even just casually followed Diem’s story knew that she had a positive attitude and a strong will to live.  She dealt with cancer since the age of 23 until her death at 32, and she became an advocate for those with cancer.  She blogged about her experiences, and she created the website MedGift.   I don’t want to focus solely on the death of Diem, especially in light of the fact that she used the warrior and fighter language, and one could assume that she would approve of the headlines about her death.

However, if you look up news stories regarding the death of high-profile figures who died of cancer, you will come across this language: Elizabeth Edwards, Adam Yauch, Roger Ebert, to name a few.  I also hope I don’t come off as critical of anyone who draws strength from using the fighting and warrior language to describe what they are going through.  Everyone is entitled to use whatever language they want to describe their own experiences, and I really don’t want to come off as the Word Police.  My point of contention is the use of this language when someone dies of cancer.

When we use the language that someone “lost a long battle/fight” with cancer, it suggests that someone in remission from cancer must have done something more than the one who died.  Someone who dies of cancer did not lose or give up or somehow lost any will to keep on living.

Michael Wosnick wrote about the battle metaphor:

It’s not the battle part that bothers me – it is the losing part. For those who ultimately die from a cancer, the idea that they have lost a battle implies to me that if they had just done something else differently then maybe they might have won [emphasis mine]. The use of the word, “lose” is like a zero-sum game to me: if someone or something loses then that means that someone or something else wins. You can’t have a loser if you don’t have winner. We should not so easily give cancer that kind of power over us.

A November 3, 2014 Independent item discussed the use of the battle metaphor in respect to those at the end of life.   The article discussed the findings of a study conducted by Elena Semino, a professor of linguistics and verbal art, who “analyzed 1.5 million words of discussion, representing the views of around 200 people closely involved with cancer care.”

Professor Semino remarked, “The battle metaphor applied at the end of life clearly can have harmful consequences for some people who end up feeling responsible for the fact that their illness cannot be treated.”  She also commented: “The metaphor somehow needs to account for the fact that you can live well with cancer.  There has to be another way to talk about someone who has died of cancer.”

Heather Cleland wrote in an August 16, 2011 piece in Walrus Magazine:

The language around cancer — of “battles” fought, won, lost, and succumbed to — fails to consider the sheer chance of it all [emphasis mine]. Sure there are cancers that we bring upon ourselves, but most are a result of the tiniest bits of bodies going rogue for reasons we’ve yet to understand. To speak of lost battles as though the warrior didn’t want victory badly enough projects our proclivity to control outcomes onto something that cannot be controlled. It’s futile, and it does a great disservice to people like Jack and Rachel who “fought” as hard as I did.

I don’t view the fact that I’m currently NED for breast cancer as a reflection of anything I did.   I cringe, and typically correct, when someone remarks about how I “beat” cancer.  I haven’t beat cancer, won or kicked its ass.  Until I die of something else, we don’t know if cancer is done with me.  I am in remission from cancer, or I’m NED.  I feel incredibly uncomfortable at any phrasing or hyperbole about what happened to me that paints me in some warrior, extreme fighter.  I was often tired, sad and scared, all of which are normal and to be expected.  I didn’t fight harder than someone else with the same diagnosis as me and who went on to have a recurrence.

Cancer is a complex, intelligent and dangerous disease, and we have given way too much credit to someone’s mindset for a positive outcome.  If a fighting spirit and positive attitude cured cancer, I’m pretty sure that Diem Brown would be alive and healthy.  Everyone also could probably name five people they’ve known who died of cancer who had a positive and fighting spirit, too.  Cancer does not care about that.

When I read the obituary for my #bcsm friend, Barb, who died of metastatic breast cancer, the last sentence made me smile, despite feeling very sad about her death:

Barb did not lose her battle with cancer; she lived graciously and courageously with it until the very end.