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.

SusanneJennEngagement03

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.

20150315CFrayn20150315CFraynIMG_3333-01Final-680

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.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

What Does “Breast Cancer Awareness Month” meant to you?

Before we all know it, Pinktober is going to rear its ugly head once again, and everywhere you look will be pink ribbons – from the grocery store, to chain restaurants and maybe a part of your downtown running path is now covered in bras (that one made me want to set the bras on fire) – all for the sake of “awareness.”  I know I have gone on and on and on about breast cancer awareness month.  I think pretty much everyone who knows me or who is familiar with Get Up Swinging knows how I feel about this month.

Well, I wanted to ask other folks with cancer, any cancer, the question: “What does Breast Cancer Awareness Month mean to you?”  The responses mostly came from other women who have had breast cancer since that’s the disease I have, but there responses from others who have undergone treatment for cancers other than breast.

 

Here are responses from those who have metastatic breast cancer:

“Even before I was diagnosed with breast cancer I loathed October. No matter where you go there is a sea of pink, ribbons, t-shirts, key chains, etc. What started out as something good had morphed into a retail/marketing machine that line the pockets of those ‘bringing awareness.’  Now after living with Stage 4 breast cancer for the past year, I understand how serious this is. There isn’t a female on this planet that isn’t ‘aware’ – that doesn’t ‘feel their boobies.’  Every person diagnosed with breast cancer COULD develop metastatic disease. Early detection does not guarantee safety.  What will save more of the 40,000 people that will die from breast cancer each year is research.  And that means money for research – not awareness.  What Komen and the others give to research is sickening. Nancy Brinkman should be ashamed of what her memorial to her precious Suzy has become. More lives could benefit from research and the clinical trials that are born of research. Until we can change the perspective of the public at large this will be an ongoing disconnect and more people will die – like me.”

“Nothing,” and then: “I have metastatic breast cancer.  When I die, I will not have lost at all.  Another reason October grosses me out: battle metaphors.”

“I think my stance has only grown stronger since being diagnosed stage 4 in the last 12 months.  I have a really hard time going grocery shopping.  I’m already getting the stupid emails about playing secret games.  How does that raise awareness?  I’m trying to come up with something for [metastatic breast cancer] similar to the ALS Ice Bucket Challenge.  We’ve just got to come up with something good.”  The same friend then said, “I still really just want to punch that Komen lady in the throat.  Do you think that will bring more awareness?  I bet it’d do more for mets than a pink frying pan.  (I’m totally kidding…. Sort of.)”

Here are the responses from those who had breast cancer, aka the people who we’re supposed to celebrate during this month (allegedly):

“Hell.”

“Enough awareness already.  Time to focus on research for those with mets.  I used to like pink.  Sometimes now I struggle with wearing it.  Oh, and it makes me want to throat punch people.”  It will shock y’all that wasn’t something I said, but damn, it’s something I truly feel.

“I cringe every October now.  SGK has created an atmosphere wherein people actually resent breast cancer charities – even the good ones. It makes me very sad.  I used to like pink, too.  Now it just makes my butt pucker.”

“Absolutely nothing.  It’s a disgusting marketing ploy.”

“It means companies profit off of a disease (mostly).”

“That I’m going to flip the fuck out the next time someone posts something about not wearing underwear or using their boobs to get out of a speeding ticket because they are playing a ‘fun’ breast cancer awareness game.   And October, the month that used to be my favorite, is now the month that I won’t be able to, even for a minute, forget I had breast cancer.”

“Well, it means breast cancer awareness for everyone else, but for me, that’s every month every day.”

 “Breast cancer is sadly something we’ve all heard of.  We’re all aware of it each October because it’s shoved down our throats.  I’m all for education of things like triple negative or IBC or mets, etc., but buying a pink frying pan isn’t going to do that either.  By the way, I don’t think that pink is a vile color; I do love it, but I hate all the negative bullshit that it stands for now.  Hopping off my soapbox now….”

“I guess the month is more personal to me.  I got THAT phone call from the breast surgeon on October 1, 2012 telling me my biopsy was malignant.  ‘Sorry for the phone call, but we need to act on this PDQ.’  So, two weeks later, I’m in surgery for seven hours, having a double mastectomy and tram flap.  I’m sick of pink.  I’m sick of Tamoxifen.   I hate cancer.”

“Most people are unaware or ignorant to anything until it happens to them or someone they love.  I feel like I’ve been under the breast cancer cloud since I was about 13 and my aunt, who was like my second mother, was diagnosed and had her mastectomy.  I don’t know if her struggle was a warning to me, so I’d catch mine earlier because she ignored hers for a while before she got checked. . . .  I try to see everything for the benefit it could or does have, but the little awareness ‘games’ piss me off because people think they are doing something when they really are not.  If the month gets more women to do self-exams, check up on something suspicious, get a physical, or donate time or money who would’ve never thought to do before, I pray that is the good that comes out of it.  It’s kind of a hard month, but so is every day once your life changes that little bomb of a seed has been planted in your mind and body.”

“I definitely feel the attention has to shift from awareness to cure.  I think we all are aware now. However, maybe any attention to the disease is good attention?   I will tell you though it pisses me right off when I see crap like … For breast cancer awareness I will be brave and post a picture of myself on Facebook without makeup…. Puuuuleeeze. Personally, those who post those self-serving pictures (oh girl, you’re gorgeous without make up, wish I could look half as great) did abso’f ing’lutely nothing to help my treatment go more smoothly – physically or mentally.  If they want to see the face of bravery, I suggest they take a field trip to the waiting room of the women’s cancer center and look at the beautiful faces there with their heads covered with baseball caps, scarves, wigs or nothing.  I encourage them to look into the eyes of those women, which might be brimming with tears because they were just given the news they did not want to hear, or tears of relief because they did.  Regardless of age, socioeconomic status, ethnicity or any other defining factor.  These women and their families and support systems have hearts full of hope.  So my hope is that October brings meaningful advances in the cure and prevention of breast cancer.”

“I don’t have a lot of attachment to it.  I went to a nice breast cancer fundraiser last night with all the pink bells and whistles for the cancer center that saved my life and had a good time and made some donations.  But, there was a lot of ‘stuff’ there, that had I been in the throes of treatment or diagnosis, would have absolutely pushed me over the edge.  So, I have awareness of the real deal!  I do feel that I’ve helped shape some fundraising events so that they don’t push those buttons for others by creating awareness myself.  I’m thinking it is a good month for me to keep being true about how it all is.  At the same time, I can stay positive about the whole thing because my doctors told me the money that is raised truly helps patients and research and I believe that.  Plus my mom with Alzheimer’s only likes to wear hot pink…which is pretty weird since my sister and I are both breast cancer survivors. She doesn’t consciously understand the significance. I think I will stay away from the pink cupcakes though; and I will definitely be remembering those we have lost who no longer can pink partake. . . .  I admit, I did buy my mom a pair of breast cancer awareness sneakers because they were hot pink.  I think like a penny supposedly goes to help somebody.  *snark*”

Responses from people who had cancer, but not breast cancer:

“Well, I don’t have that type of cancer, but to me, it means I expect to see women without cancer showing off their boobs and bras and women with cancer not feeling great about being flooded with images of boobs.”  When I read this response, I actually shouted “YES!” loudly at my desk.

“Blegh.  What about the other kinds of cancer?  Pinkification stinks.”  I agree.

“I wish oral CA had the same publicity as breast CA.”

If those with breast cancer are expressing disgust and resentment at the very month that is supposed to celebrate them, then changes need to be made.  We need to stop trivializing a deadly disease by wrapping it up in a pretty pink bow.  Men also get breast cancer, and I couldn’t even fathom how horrifying Pinktober would be to a man with breast cancer.  If a friend sends you an invite for the stupid annual Facebook game so many people mentioned above, respond with links from those with cancer as to why these games are offensive.

Most of the time people mean well, but I have come across so many people who want to use Pinktober as an excuse to have a girls’ night out and drink (dumb) or just say boobies or knockers or hooters.   We need to take breast cancer seriously, even if deals with a body part that can reduce grown adults into immature 10-year olds.

I asked Lori Marx-Rubiner, the president of Metavivor, how can anyone help a loved one going through breast cancer treatment, and here is her response:

What can people do?

Give of themselves – run errands: dry cleaner, market, carpool

Make a meal – check first abt dietary restrictions

Keep patient company during treatment

Come by with a good movie

Check in 6-7 days after treatment, when the attention has died down

 

If you don’t have a specific person in mind-

Volunteer at a treatment or support center

Organize a local fundraiser

Sign up for Army of Women

 

No time?

Send a gift card – Jamba Juice, bookstore, Netflix subscription, local restaurant that delivers

Donate to research or directly

My mother, my inspiration

She is why I fight the Pink Ribbon culture.  She is why I throw away my bedazzled “survivor” sash and pink boa.  She is the reason why I want every one I know to think before they pink.  She is why I want to be a fearless friend for all those with metastatic breast cancer.   I love being NED and thank God every day for that and good health.  I want to be a part of the breast cancer discourse which sees us providing support to those with metastatic disease and abandoning awareness for the sake of awareness and the trivialization of a deadly disease.

My mother was more than a statistic.  She was a daughter, a sister, a cousin, a friend, a wife, a mother, a devout Catholic, an aunt, a social worker, a student…. She had a great life, and metastatic breast cancer was what killed her, not who she was.   I don’t remember my mother, but I’ll never stop wanting to make her proud.

Don’t disappear from the pictures

Whenever I talk about why research for metastatic breast cancer is so important for me, I typically post this picture, which was obviously taken when I was just a wee one.

Image

When I have mentioned that my mom died of breast cancer and then I post that picture, it recently dawned on me: “Huh, I wonder if anyone seeing this picture thinks that she died when I was a baby, not when I was in the second grade.”  That’s what got me wondering and subsequently asking my dad, “Hey, are there any pictures of just me and mom?”

My dad could only find two pictures, and it wasn’t any posed pictures of mother and daughter, it was two stolen moments that my father, an amateur photographer, caught.   He tried to explain why and how this happened, “Well, she didn’t like to have her picture taken.”  For the first time in a very long time, I felt really mad at my mother.

Someone reading this might think, “Well, the 80s were different.  It’s not like nowadays where everyone has a camera phone and it’s selfies 24-7.”  My dad has been an amateur photographer since his 20s, and he usually had his camera nearby.  My dad is the guy with the camera.  He sure as heck brought it to family events.  My mother dodged the camera.  She scowled and protested at my dad when he tried to take more pictures.   My mother was well known for her camera avoidance.

Image

Ever the peace keeper, my dad’s response when I expressed disappointment via email regarding the lack of pictures of mother and daughter: “Memories can be sharper than images.”  She died when I was 7 years old.   I do not have memories of her – they are more like snippets.   Plus, the snippets I have of my mother are from when she was sick from cancer treatment, not as the mother she probably wished I remembered her as.  Oxygen tubing, hospital visits, wigs.

As a 33 year old woman, the thought of being mad at my mother is so foreign to me.   Like, real, justified adult anger at a very deceased woman.  I feel pissed at her for not getting over her hatred of being photographed and just sucked it up.  I wished she would have said to my dad, “Hey, grab the camera.  Take a picture of Lara and me.”  Nope, she didn’t do that.  She ducked and dodged my dad’s camera like he was a landmine she didn’t want to step on.

In her defense, she was sick for a long period of my life from ages 2 to 7, but I would have still cherished a picture of my mom hugging me, showing some sort of maternal affectionate for her only daughter.  Some tangible proof that she was here and she loved her daughter, a daughter she worried (according to a friend of hers) would also have breast cancer.  I wouldn’t have cared in the slightest if I had pictures of my mother when she was sick if I was in the picture, too.  Her illness was a part of our lives, but I imagine that’s not something she wanted my dad to capture.

When she disappeared from the pictures, she disappeared from the events that took place.   One of the snippets I remember from a family vacation we took the summer before she died took place at a go-kart place in Panama City Beach, Fla.  My brothers were each driving their own go-kart, and I was in a go-kart with my dad (since seven years old aren’t allowed to drive those things).  My mother stood off to the side, watching us and hanging out by the railing.  She wasn’t participating, just watching.  When I think about that memory, it makes me sad because I have wondered if she was just disappearing right then and there.  My mother disappeared from my memory, and now she’s been this abstract figure in my life, as tangible as a dream.

My plea to parents, and this goes to anyone really, don’t disappear from the pictures.  Who cares if you think your hair is frizzy or you have a “weird” smile or whatever hangup or lie that we tell ourselves, and don’t want to be in the pictures?  When you have children, forget all that and just get into that picture.  Smile.   If you are the one usually taking the picture, because as the photographer at events I know how easy that can happen, then hand the camera off to someone!  Strangers are usually cool if you ask them, “Hey, can  you take a picture?”

I’m not 100 percent sure why my mother avoided having pictures taken while she was sick.  Maybe given her hatred of the camera before cancer just meant that the hatred multiplied by 100 after her diagnosis?  Maybe she thought if she didn’t let my dad take pictures of her bald or with a horrible wig on or other hospital-related scenarios, that we wouldn’t have to remember a horrible time in our lives.  Guess what, we still do.  Whatever it was, she did a disservice to me, her youngest child.  I was robbed of my mother, and then my mother robbed me of the ability to have a precious keepsake of just her and me.

Guilt

Last night I found out that a Twitter friend of mine, Jada, had died of metastatic breast cancer at the age of 35.  I stared at my screen – stunned.  Although her Tweets had shown a decline and nothing but bad news for her, it still felt like a punch to the gut to hear of her death.

Jada

Jada is not the first #bcsm friend of mine to have died of breast cancer.   Jen Smith, who wrote the blog Living Legendary, died of metastatic breast cancer in 2013, leaving behind a young son Corbin.  In her interview with Lisa Bonchek Adams, another metastatic breast cancer blogger and advocate, Jen said:

I know society and the media have conditioned us to use the language “battle” against cancer, or in the “fight/war” against cancer. This is something that I’ve never really felt connected to. After all, what am I battling? A rogue cell in my own body, so in essence, I’m fighting myself. The best quote I’ve found that relates to how I feel is when Elizabeth Edwards died in 2010. Her friend said, “Elizabeth did not want people to say she lost her battle with cancer. The battle was about living a good life and that she won.”

The other frustrating thing I run in to is “So-and-so tried XYZ therapy and was stable for 10 years, why haven’t you done that one?” Then I explain that I tried XYZ and had progression in 3 months. I think getting people to truly understand that this is such an individualized disease is key. Just because XYZ works for one person doesn’t mean all people will respond the same way.

And, this is just me, personally, but I hate being referred to as “sick.” I’m not sick; I have a disease called metastatic breast cancer. If I was “sick” that would imply that I’m possibly contagious or that I’ll get better, neither of which are true.

When I hear about another death from metastatic breast cancer, not only do I feel sadness but I feel guilty.  Why them and not me?  What did I do that they didn’t do?  What did I have in my favor that they didn’t?  Survivor’s guilt, I believe is the term for this feeling.  Jada was 35, and I’m going to turn 34 in two months.   I followed her Twitter feed and often thought: This could have been me.

This still could be me.

You see, my guilt is not just confined to survivor’s guilt.  Maybe it’s my Catholic upbringing or the fact that breast cancer has brought out all the feeeeeels in me.  Perhaps both?

I have felt guilty that my two years of health issues have severely postponed plans to start a family (or realistically, completely cancelled them altogether).   The idea of having children with someone like me, someone who can go from healthy to incredibly ill with little to no warning, is enough for The Boyfriend to reconsider having a family.  The thought of raising a child or children by himself is too much.  (Yes, yes, I know – nobody’s future is guaranteed, and I have heard: “But you can get hit by a bus tomorrow,” but a tragic accident versus a prolonged illness are two different scenarios.)   The Boyfriend has every right to be scared, as his feelings are valid.

In his defense, I have wondered if I should have children and possibly leaving young children behind without a mother, too, like how I grew up.  I wish I could tell him that it’s going to be okay, and we’ll never ever have to deal with cancer again.  I can’t.  I don’t know that.

I have felt guilty that I no longer want to talk, interact or even be in the same room as my step-family, thus creating a lot of stress and pressure on my dad.  His life is centered around this family, and I accept that.  I just no longer want any of them in my life.  I did tell him that if he ever was sick and needed me, I’d be down there in a heartbeat, and I wouldn’t be a dick to the step-family.  I won’t be fake nice or phony.  I know that my refusal to see the step-family as my family will cause stress and tension in get togethers, but I chose my path and I intend to stay on it.  I don’t see any of the steps apologizing to me.

Going through breast cancer treatment made me re-establish priorities in my life, and when I realized that people who were supposed to be my “family,” didn’t care about me, I cut them out of my life.  If someone doesn’t care about what happens to me when I have cancer, I don’t care about them.

Iregretnothing2

I have felt guilty that I am not the pink ribbon loving, platitude spewing and survivor banner carrying woman who has had breast cancer.  I’m not that woman, and I often wonder if my refusal to play in the pink party has made others uncomfortable or downright afraid of me.  Initially after I was done with active treatment, I briefly flirted with the identity as a pink ribbon breast cancer survivor.  After learning the truth and reality of breast cancer and the pink ribbon, I walked the other way.  Ran, even.   That’s not the type of person I want to be after cancer.

(I do not fault anyone who wants to embrace the pink ribbon and the survivor label.  If it brings you peace and comfort, let it continue to do so.)

I have felt guilty that I haven’t become the Forever Changed woman who has had cancer.  I didn’t completely overhaul my diet and lifestyle.  Some individuals have changed their entire lives, and I’ve probably made a fraction of the changes.  Sure, I have started running and have pretty much cut alcohol from my life.  However, I couldn’t tolerate Tamoxifen and stopped after six months because the side effects were too much.  Every time I have come into contact with someone who takes Tamoxifen and also lives a BPA, paraben, chemical, sugar free life, I am overcome with guilt, feeling weak-willed.  I wish I was strong enough to have tolerated Tamoxifen or changed every aspect of my life. I think about my inability to take Tamoxifen often, often wondering if I doomed myself.  Then I feel guilty that I can put my loved ones through this again because I wasn’t strong enough.

Whenever someone I have made a connection with because of breast cancer dies from this disease, my heart hurts.  Jada was a beautiful woman, and her death just goes to show how much more work needs to be done.

RIP, Jada.Walt Whitman (1819–1892). Leaves of Grass. 1900.

166. O Me! O Life!

O ME! O life!… of the questions of these recurring;
Of the endless trains of the faithless—of cities fill’d with the foolish;
Of myself forever reproaching myself, (for who more foolish than I, and who more faithless?)
Of eyes that vainly crave the light—of the objects mean—of the struggle ever renew’d;
Of the poor results of all—of the plodding and sordid crowds I see around me;
Of the empty and useless years of the rest—with the rest me intertwined;
The question, O me! so sad, recurring—What good amid these, O me, O life?

Answer.

That you are here—that life exists, and identity;
That the powerful play goes on, and you will contribute a verse.