My 9 Wishes

A couple of weeks ago, I shared 9 breast cancer-related wishes to mark the 9th year since I was told I had breast cancer. Much to my surprise, my friends asked me to make the status public and complete strangers actually shared it. (Wuuuut). So, to kick off another Breast Cancer Awareness month, aka Pinktober, or Stinkober, I want to share these 9 wishes again. However, this time – I’m expanding on these wishes. Get ready for some links, analysis and probably a lot more curse words.  I am who I am.

I have 9 wishes I want to make to mark the 9th year since I was told I had breast cancer:

1. I wish for nobody to play the stupid FB “awareness” game for breast cancer this year. It’s dumb, and it fills me with rage when I see it. I see red, not going to lie. My disease isn’t a fun cutesy game.

I have written about this before and I know I’m repeating myself. I don’t care. I’m also going to reshare something Lisa Bonchek Adams (who died from metastatic breast cancer) wrote about this in a January 17, 2013 blog post:

Anyone who has breast cancer and uses your FB status update as an indicator of whether you support their cause is not very enlightened. When I rank “how to help those of us with cancer,” sharing one of these paragraphs as a status update is the lowest possible method of showing support. There are endless ways to do that. I think it actually is the opposite; sharing these status updates makes people feel they are doing something real for breast cancer causes when they aren’t.

I’ve also had it with the “I’ll bet most of my friends won’t share this post” attempt to guilt me in to sharing something like “share this if you think domestic abuse is awful.” “Share this if you think autistic kids are special.” Well yes, actually, I believe both of those things. And just because I didn’t share them as my status update doesn’t mean I do NOT agree with the statements.

Just don’t do it, please. I’d rather you do nothing than share that.

2. I wish for everyone to think before you pink this October. Be mindful that the pink items lining the shelves are not doing anything for breast cancer. They are just using my illness to make some sweet sweet dollas.

Here are the questions that Breast Cancer Action wants anyone to think before buying a pink item (see here for the full blog post):

1. Does any money from this purchase go to support breast cancer programs? How much?

For example, you’re at the grocery store, and you see a pair of pink ribbon socks by the register and you think, “Aw these are cute.” Pick up that pair of socks and look at the packaging. Does any money of your purchase go to … anything? Is there a mention of a charity, even if it’s one that’s problematic?

If the answer is no and that pink ribbon item is 100 percent purse capitalistic greed, do me a favor – don’t buy it. Too many companies profited on the deaths of so many.

2. What organization will get the money? What will they do with the funds, and how do these programs turn the tide of the breast cancer epidemic?

3. Is there a “cap” on the amount the company will donate? Has this maximum donation already been met? Can you tell?

4. Does this purchase put you or someone you love at risk for exposure to toxins linked to breast cancer? What is the company doing to ensure that its products are not contributing to the breast cancer epidemic?

3. I wish for the ability to bitch-slap anyone wearing a “save second base” or “save the tatas” shirt and not be arrested. That’d be awesome. I’m talking a slap like Soap Opera level slap.

I wrote “My Disease Isn’t a Cutesy Slogan” 5 years ago, and my feelings have not changed.

Since I had a double-mastectomy, does that mean I somehow failed since mine weren’t saved? Does that mean I am less of a woman, since I technically don’t have breasts anymore? My body image after my double mastectomy has completely changed, and it hasn’t been for the better. When I see “save the tatas” or “save the boobies,” I am constantly reminded of what exists under my shirt — scars, stretch marks and silicone.

These cutesy or provocative slogans offend me because they reduce women to a single body part — our breasts. The body part that could very well mean our death if the cancer spreads from the breast to other organs (aka stage 4 or metastatic breast cancer). It gives the clear message that the focus should be on saving our ability to be sexually attractive to the opposite sex. Heaven forbid you lose the body part that makes others feel attracted to you, because if you lose your sexuality, you lose your worth.

4. I wish for the media to report on cancer and metastatic cancer ACCURATELY. Nobody dies from breast cancer – they die from metastatic breast cancer (ie when it has spread to other organs). When it’s spread to their brain or lung, it’s still breast cancer.

Nobody ever dies from breast cancer. They die from metastatic breast cancer, which is when it’s spread to a distant organ. It is important to accurately report that someone has died from metastatic breast cancer, so the general public knows there is a difference between breast cancer (contained with the breast) and metastatic breast cancer (spread).

The Guardian reported on Jackie Collins’ death in 2015 but made no mention of the word “metastatic.” The BBC also did not mention the word “metastatic.” Recently, the news reported on the death of news anchor Cokie Roberts, whose family released a statement saying she died “due to complications from breast cancer.” I found little to no mention of metastatic breast cancer or recurrence in the news surrounding her death. She was a veteran news anchor – given her profession, you’d think there would be an accurate reporting on what actually killed her.

There needs to be actual acknowledgement of what kills people when they die from this disease. They do not die from breast cancer, they die from metastatic breast cancer. How can we educate the general public if we don’t even use the proper terminology?

5. I wish that my friends who have stage 4 breast cancer can slap early stagers who call them mean or bitter. I realize two of my wishes are related to slapping people, and I’m okay with it.

Rethink Breast Cancer shared the statistic on their Instagram page that 20 to 30 percent of people diagnosed early stage breast cancer will be re-diagnosed with MBC. Y’all, so many early stagers lost their damn minds.

One person commented: “I think you should honour how this post harmfully triggers many of us. I understand you’re trying to educate but I think there’s a better way than this.”

Yeah…. I’m going to let Judit Saunders field this one and it explains why I feel like stage 4 patients should be given a pass to slapping people: 

 SO, let me digest what you just said? Because a FACTUAL STATISTIC that many women face as their REALITY is “triggering” & hard to digest we should silence & simply erase any evidence that it exists??? Let that sink in…What in the actual bloody fuck is happening??!! We have regressed this badly with the division between the ebc and metastatic community?? Now, when I’ve been advocating for this disease since having my own metastatic recurrence I feel as though I am fighting for these ill informed-pull-the-wool-over-my-eyes-i-need-to-be-sheltered-by-reality-or-else-I’m-sad population & they have zero clue how our actions may one day save THEIR lives!

And

Did anyone not think that maybe if this disease wasn’t deadly then all you early stagers over there popping your Ativan due to being “triggered” wouldn’t be fearful anymore because people would no longer die? Just stop and THINK about it. THINK…EMPATHIZE…and then THINK about it some more. I don’t know how to make this more understandable. I don’t know how to make it clearer?! I have plenty of early stage friends who get it and stand united with the MBC community, but then when comments propagate to try to shut the MBC community up…ya, you’ve picked the wrong gal for that because I am done. Respect is earned and it’s a two way street. However, many comments simply want us to stop talking about it. We need to hide under a rock and just die apparently or else we have caused people to feel “triggered.” Hypocrisy at it’s finest… Ignorance at it’s peak… Stupidity in it’s lowest form.

See? Don’t you agree that Judit should be able to slap people? Read more of her righteous rant here.

I get being absolutely scared out of my mind of the idea of a recurrence. I get that. Sometimes that fear has paralyzed me, and it’s probably one of the main reasons I got my tush into counseling. It’s a lot. How-the-freak-ever, I still have a heart and the ability to empathize, and I would NEVER tell anyone with stage 4 to stop speaking their truth because they’re doin’ me a frighten. How inconsiderate do you have to be to think that’d ever be okay?

“Excuse me, ma’am. I know you’re a young mother with three young children, but could you please stop talking about your terminal diagnosis? It’s really bumming me out.”

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Just because you don’t like a statistic or a statistic scares you, doesn’t mean that the statistic goes away if you ignore it. Nope, still there. Deal with your fear, shut up, or at least think about what words will come out of your mouth next. Might I recommend therapy?

6. I wish for more people to know that MAMMOGRAMS DO NOT SAVE LIVES. They detect cancer. That’s it. There is no evidence that mammograms have saved lives.

An August 6, 2005 article in The BMJ reported that a US case control study showed that “Breast cancer screening in “real world” situations is not effective in preventing mortality.” The author of the study found, “We observed no appreciable association between breast cancer mortality and screening history, [regardless of age or risk level].”

Nine years later, a February 12, 2014 Reuters article reported that, “A new study has added to growing evidence that yearly mammogram screenings do not reduce the chance that a woman will die of breast cancer and confirms earlier findings that many abnormalities detected by these X-rays would never have proved fatal, even if untreated.” The study, which studied 89,835 women aged 40 to 59 over a 25-year period and was published in the British Medical Journal, “found no reduction in breast cancer mortality from mammography screening . . .  Neither in women aged 40-49 at study entry nor in women aged 50-59.”

I am not saying that anybody should stop getting mammograms. There’s no really other way to get your screening. What I am saying is that we need to see mammograms detect cancer – that’s it.  Mammograms do not save lives.

7. I wish for everyone to realize that early detection does not always mean you “beat cancer.” There are so many women whose breast cancer was caught early stages who went onto become metastatic. It’s not about when you catch the breast cancer, it’s about the tumor biology.

Catching breast cancer early surely does help, but it is not a guarantee that your cancer will never come back metastatic. I personally know many women whose breast cancer was caught early stage and who later were diagnosed with metastatic breast cancer. Some of those women have since died.

An estimated 20 to 30 percent who were diagnosed early stage will be later diagnosed with metastatic breast cancer. However, we don’t know the exact numbers because Surveillance, Epidemiology and End Results (SEER) does not track information pertaining to a metastatic breast cancer recurrence. SEER tracks those who were diagnosed Stage 4 right off the bat (aka de novo). The Metastatic Breast Cancer Network explains it this way:

My friend Shirley was diagnosed with early-stage breast cancer in 1991. Her cancer came back 12 years later—she has been living with Stage IV breast cancer for the past 13 years. For statistical purposes, Shirley and other patients like her are tallied as successfully treated for early-stage breast cancer. Only upon their deaths will they be counted as metastatic breast cancer patients.

The 20 to 30 percent statistic could be higher or lower, I can’t say for certain. If I had to guess, I would say the stat is probably much higher. I do know that until we know all the data, how could we ever say for certainty that early detection saves lives when we don’t know what happens to the woman 7 or 15 years later?

See here for more information.

8. I wish for everyone I know to understand why I don’t call myself a survivor or say I beat this, especially now that I know I have a genetic mutation. I’m NED (no evidence of disease) but my body works against me. I don’t see this as a battle or a fight. This is my body, and this is what it does.

I recently wrote about my mutant diagnosis here.

I want to say fuck you to anyone who wants me to see the positive in what’s a very much negative situation. There’s no putting lipstick on this pig. Let me say this very clearly – I’m allowed to feel angry and sad. If my anger and dark mood makes you feel uncomfortable and icky on the inside, those are your feelings to manage. Not mine. I don’t have to put a fake smile on my face to make anyone feel comfortable.

I looked into a crystal ball, y’all, and all I saw were a never-ending parade of doctors visits, MRIs, surgeries, and whatever medical procedure is necessary to keep me upright. Why can’t we let sucky things just suck? It’s okay. I’d be a robot if I could be given this diagnosis, put a smile on my face, and go, “It’s okay, but things happen for a reason?”

I have no desire to be anyone’s inspiration porn, and my anger isn’t an invitation for any pity, as well. I’m not feeling sorry for myself. I am acknowledging my feelings, and right now, those feeling are pretty much anger and despair.

9. Finally, and this is a special wish because I used to believe I’d be gone by the time I was 40 like my mother – I wish for continued good health for as many years as I can and to never ever take it for granted while I have it.

 

So I did a thing

Pretty much anybody who knows me knows I do not like the spotlight, nor is it something I ever seek out.  The very idea of it makes me ridiculously uncomfortable, like a thousand bugs crawling on me. I don’t like being in photographs, and I cringe when I see myself on video.

I know I have pontificated on the importance of parents being in the photographs with their kids based on the fact my mom hated being in the photos. I will cop to being a hypocrite when it comes to being in the pictures and videos.  Lara Huffman, hypocritical photographer. #thatsme

So, when I saw a post on Facebook, announcing that UPMC Health Plan was looking for volunteers for their “This is what a Runner Looks Like” campaign, I thought, “Hmm, maybe I can talk about Metavivor?”

I knew I could get UPMC’s attention by just saying a little about myself. Breast cancer + young age = catnip for social media teams. People love the breast cancer SURVIVOR narrative, so I used it to my advantage. Surprise surprise (or not), they called me up and said they wanted to share my story.

I told the very nice woman up front that I didn’t want to do it if I couldn’t talk about Metavivor somehow and mention their name.  She tried to get me to agree to do the series, even if I couldn’t talk about Metavivor, insisting that others will find my story inspirational. I told her that yes, I am sure, and I don’t want to put myself out there like that on behalf of UPMC if I couldn’t talk about the organization I wanted to broadcast.

I will only publicity whore myself out for charity, thank you very much.

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When I didn’t hear from her for a handful of days, I thought, “Welp, big hospital conglomerate decided they didn’t like my provision. OH WELL.” Then they surprised me, and got the approval.

Boy, the day of the taping, I felt so awkward and wanted to hide. I kept telling myself, “It’s for Metavivor, it’s for Metavivor.” I also thought if I could put it out in the universe that not everybody becomes some zen Cancer on the Buddha top after going through cancer treatment. That’s not me. I don’t have any answers, or pretend that I even do. Cancer didn’t make me a better person or some changed, wide-eyed person who takes life by the horns.

Cancer did give me something I didn’t have quite as much before: impatience with people who don’t deserve my patience. I don’t have the time for friendships that caused me more grief than joy. If you are not in my life, then it’s for a very deliberate reason, which I am under no obligation to explain myself. I definitely cut people out of my life who needed hand holding constantly, but if you have a problem, then they have to one-up you. I cannot stand those people, and they make me see red. I definitely do not have patience for anyone who wants to mistreat me or my loved ones.

 

So I never want to be put on a pedestal, because I’m going to jump off it. I am not some damn hero for not dying from breast cancer. (The real hero in that is science!) I also don’t want anyone to put me on a pedestal for talking about metastatic breast cancer. Shit like that is a distraction. Talk about metastatic breast cancer, and the need for research and real change in the breast cancer narrative.

The downside of making regular folks out to be heroes is that eventually the magic evaporates and what’s standing there is a regular person with regular flaws.

So, luckily, UPMC Health Plan edited me in a way that’s true to me, AND I got to mention METAvivor.

This is What a Runner Looks Like: Lara H.

It’s surreal to think almost 15,000 people watched this almost 2-minute clip of me TALKING. When the video first posted, I felt so uncomfortable and batted off any praise like a fly buzzing by me. Make it stop, make it stop, make it stop. Stop talking about me and go visit METAvivor. 

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I am not looking to be anyone’s inspiration, I’m really not. That puts a lot of pressure on me to keep deliverin’ the goods, and I don’t have the patience to feel weighed down by unrealistic expectations. This also isn’t me fishing for compliments. But you are! I relish that my friends admire me, and I don’t take that lightly. I wouldn’t be friends with them if I didn’t admire them either.

I know I signed up to do this, and I exposed the name METAvivor to almost 15,000 people. That’s all I wanted to do, and I can tell that the buzz around my video is already quieting down on social media (thank GOD). I just want the conversation be about metastatic breast cancer and the 114 that die in the U.S. every day from the disease. Instead of being wowed by the messenger, focus on the message. 🙂

I’m sorry for feeling uncomfortable about the exposure and not knowing how to react to people telling me they cried.

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Would I do something like this again? Uh, probably not, unless they let me link to METAvivor or talk more about metastatic breast cancer. But do something like this just to talk about myself?

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30 years

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

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

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

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

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

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

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

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

My Version of the “Breast Cancer Awareness Game”

I have heard that this year’s “Breast Cancer Awareness” game is already rearing its head, and I have a couple initial thoughts.

First one being, come the fuck on. It’s not even October. It’s not even SEPTEMBER. Why why why?

My second thought is this, and will always be this, WHO IS NOT AWARE OF BREAST CANCER? Seriously, find me that person who isn’t aware of breast cancer because they need to have a talk with me. I want to know where they have been hiding for the previous 20 years and see if they need joining the 21st century.

Here’s the game: you receive this message.

“Hi beautiful ladies so here it is the time of year again when we try to raise awareness of breast cancer through a game. Its very easy and i would like all of you to participate. Last year we had to write the colour of our bra’s on our status. Men wondered for days what was going on with random colors on status’s. This year we make reference to our love life status as a flavor. Do not answer to this message just post corresponding word on your status and send this message privately to all the girls on your friends list. Blueberry is single, pineapple is its complicated, raspberry is I dont want to commit, apple is engaged, cherry is in a relationship, banana is married, avacado is I’m the better half, strawberry is can’t find mr right, lemon is I want to be single and raisin is I want to get married to my partner. Last time the bra game was mentioned on t.v let’s see if we can get there with this one. Please resend this to all your girly friends then update your status with your answer ONLY! DONT TELL ANY GUYS!
I hope to see lots of fruit 💝

 

FRUIT, BECAUSE WE’RE TALKING ABOUT OUR MELONS, LADEEZ! AMIRITE OR AMIRITE.

Okay, here is what I want you to do if you find this word excrement salad dressed up as awareness in your message box, hit a reply all and send them this:

Hi beautiful ladies!  It is the time of year again when we try to raise awareness of breast cancer , but not through a game. Games are so 2016. Let’s raise awareness by education and outreach – what do you say, gals? This year, how about we make reference to the reality of breast cancer, and send this message privately to all the girls on your friends list. Post the following: 113 for the amount of women and men who died of metastatic breast cancer in the U.S. every day;  33 months for the average lifespan following a metastatic breast cancer diagnosis; men for the fact that MEN actually get breast cancer too; Metavivor for the name of a non-profit organization dedicated SOLELY to researching metastatic breast cancer; October 13 for the one day out of the month of October dedicated to metastatic breast cancer, the only breast cancer that kills; 6% for the percentage of women and men diagnosed with stage 4 initially; and 20 to 30% which is the estimated amount of those with early stage breast cancer who become metastatic later on. Let’s see if we can get real breast cancer awareness out there! Please resend this to all your friends and then update YOUR status with your answer only! Okay, if you want to add more, by all means. This is serious business, and it’s not a fucking game. 

I hope to finally see this being taken seriously! 

What do you think, friends? Are you in? Let’s drown out the pink noise with real action.

We Need to do Better

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

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

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

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

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

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

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

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

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Credit: Metathriving.com

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

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

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

Pinktober is coming

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

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

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

  • Research > awareness

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

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

Did you know that men get breast cancer, too?

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

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

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

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

  • Think before you pink

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

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

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

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

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

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

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

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

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

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

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

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

Friend: You’re an asshole, Lara.

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

Friend: [Unfriends Lara]

… and scene.

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

How hard is it to tell the truth?

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

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

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

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

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

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

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

 

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

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

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

September 23, 2013 CBSNews.com article reported: 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

—————

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

 

MIA

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

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

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

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

giphy

gatsby-leo-051113

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

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

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

Mets Monday: Susanne

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

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

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

I was 39 years old.

What is life like as a metser? 

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

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

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


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

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

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

 What does “breast cancer awareness” mean to you?

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


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

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

What makes you happy?

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

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.