Marathon

My first marathon

Y’all, I am a marathoner. Straight up, after months of training, self-doubt and eating more than someone probably should, I ran 26.2 miles a month ago, and I have the shiny medal to prove it.

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When I signed up for the marathon, I was apparently optimistic and slightly delusional about my projected finish time because I was assigned Corral C. I’m not a Corral C runner, more like a D or E. I probably annoyed the other Steel City Road Runners about my Corral place.  “Maybe I should be in Corral D? Or E? But if I’m in Corral C, is that okay?”

After patient reassurances, I went into Corral C. I moseyed on down to the back of Corral C, and I ended up starting with the beginning of Corral D.

At the beginning of the race, they had fireworks. Fireworks! I felt like a little kid. I may have even squealed.

Since this was the Nationwide Columbus Children’s Hospital Marathon, every mile had a patient child champion wearing oversized foam hands, like you would find at a football game. Despite not being someone who gives high gives, I high fived these kids whenever I could BECAUSE I AM NOT DEAD INSIDE.

One of the miles was a Memorial Mile, and another one was an Encore Mile, which featured children who were past patient child champions. I honestly thought I was going to lose it during the Memorial Mile when I saw all the families holding up posters of their deceased children but still cheering me on. We all had our names on our bibs, so these families were honestly going, “You are doing great, Lara!” “Way to go!”

During the encore mile, I high fived a bunch of these former child patient navigators, who were also cheering and telling me I was doing a great job. I fought the urge to cry like I do at videos of dogs reuniting with their owners after a long period of time. Ugly. Crying.

I know I have been through some shit with my own cancer. I am an adult, though, and these are children. These were children. They are innocent. When I got sick, it wasn’t pretty but it made sense. My mom got cancer young, and now so did I. When a young child is going through cancer, it’s just heartbreaking and shouldn’t be how the world works.  How do you explain when a child comes down with a life-threatening illness or injury? You can’t.

The first half of the marathon, I felt strong. Hell, I even had a mile where I averaged 8:45, like how is that even possible. Oh wait, adrenaline. When the half marathon and marathon split and most of the runners went left instead of straight, boy I felt a weird sense of dread, like shit just got real.

Around mile 21 or 22, that’s when the mind games with myself started showing up.

What happened? You were so strong in the half.

You are a sham of a runner.

Why are you doing this to yourself?

I was my own worst enemy and my greatest cheerleader.

It’s okay if you’re not as strong as you were in the first half. Give yourself a break.

No, Lara, you are awesome!

You’re doing this because not everyone can do this, but YOU can do this.

The last two miles were the worst. I had to stop and walk a handful of times. Every time I started running again, the words “mother fucker” escaped my lips. I had to psyche myself up before I could run again. I swear, I probably went through the five stages of grief during the marathon. Bargaining and denial did play a big part of the last couple of miles.

With less than a mile away, the 5 hour pacer ran by me as I was walking. I thought to myself, “I need to run harder and beat her!” (Denial.)

Ten seconds later as I huffed and puffed, I thought, “Don’t be stupid. Just finish.” (Acceptance.)

For some reason, I stopped about ten or so feet from the finish line. I didn’t cross the finish line all strong and yay, woman power.  It was more like I crossed the finish line all crying and hyperventilating. With my hand on my chest and my emotions boiling out of me, I walked over the finish line with two medics waiting for me.

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“Are you okay?”

Instead of responding, “Of course not, I just ran a marathon,” I replied, “I think I might puke.”

I didn’t puke, though. I just hyperventilated and cried, and let this young man escort me about 20 or so 30 feet as I walked to the best of my ability.

So, I did it. My official time was 5:00:58. Seriously. I was one minute away from seeing four at the beginning of my time. One freaking minute. Maybe if I didn’t stop short of the finish line to have a mini-panic attack or outpouring of emotion, then I could have been under 5 hours. I could have trained harder. I could have had a better diet and been stronger.

Who knows?

When I began training for this marathon, I was going through a breakup of my 7.5-year relationship. It set me back, of course. I bounced back in so many ways. At the beginning of my training, I was in a horribly dysfunctional relationship that had been dead in the water for two to three years.

Even during a short period of time, things can always change for the better. How do I know? At the end of the marathon and outside the athlete area, an amazing man who has made me so happy and treats me like I am the cat’s meow waited for me . . . with a big smile on his face and a congratulatory hug.

I was never an athlete as a kid. I stunk at soccer, basketball or softball. I would rather be reading a book or watching television. I never had a competitive streak as a kid. If me and someone else were going for the ball, my first instinct would be to go, “eh.”

Running just has me competing against myself, and right now, I will probably do another marathon . . . just so that I break sub-5 hours. I will do it, too.

Huffman rules.

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Yo, yo, Get Up Swinging readers. I am back, kind of. A lot has happened since I last updated and if you’re interested, keep on reading.

The primary reason why I went on an unintended blog hiatus is the fact I started a new job. In mid-October of last year, I resigned from the job that I had been at for more than 9 years. It was a long time coming, and I could not be more excited. I made a lot of wonderful friends at my old company, and I wouldn’t be at my new job if it was not for this nine-year stint.

Boy, though, I could not be more excited and relieved to be moving on. I had plateaued at that company years ago, and there was nowhere for me to go. I had been getting negative reviews for three years in a row, and I wasn’t given any type of raise. I felt like I was repeatedly running into a wall hard, getting up dazed and then running back into the wall again.

When the opportunity for this new job for more money, opportunities and the chance at a real career path, I jumped at it. Did I ever. I was so unhappy and miserable at my old job, and my life had to change. There was drama when I left and I got threatened with a non-compete. That’s why I remained pretty much silent for the last nine months because I was afraid of being accused of doing anything untoward. Now, my non compete period is over, and I feel free to share about my life, especially my professional life, without threat of litigation.

I am happy at this new job. Sometimes the hours make me want to curl up into a fetal position and whisper to myself “it’ll be okay.” I am at a job that pays so much better, offers career training and opportunities and has expanded my skill set in ways I never could before. I’m grateful. I’m being challenged and at the same time, appreciated.

I honestly feel like a completely different person since I switched jobs.  I don’t wake up feeling a suffocating sense of dread.

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The other big change in my life occurred a couple of months ago. My boyfriend of 7.5 years and I broke up, and he moved out. Sigh… Things that cannot be undone were done and now we’re done.

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Our relationship was not right for two years, probably three. I knew something was not right for at least two years, and I should have ended it back when the signs were there. The signs were neon, blinking and in all caps.

RELATIONSHIP IS OVER.

I was not ready then. I was scared. I was scared to live on my own and without him. I also wanted it to work out, and I tried so hard to make it work. He was with me during cancer. We had gone on so many adventures together. I went skydiving with him. My longest relationship before him was 10 months.

When things become bad for a long period of time and you find yourself in relationship purgatory, then both people need to want to leave it to ever go anywhere. He never wanted to leave the purgatory. We were stuck. We were not being completely honest with each other, him definitely more so than me. We avoided the truth staring at us in the face.

It’s done now. I could hate him, curse his name and tear up all his pictures. Frankly, I used up all that jilted ex girlfriend energy in those two years since I knew he was not on the level. Now that it’s over, there’s a sense of relief and sadness. I can and will forgive hi, because how else could I ever move on?

The sick irony of it all is now that we have laid all the ugly truths on the table, he and I are closer than we ever were in the last couple of years of our relationship. I don’t know if this honesty is the result of a sense of freedom now that the commitment ties have been cut. Like, why not just say it because it’s not like we can break up even more so than we are? Ah who knows, maybe I’m being cynical and this openness is the result of two people who learned the value of each other too late.

We are going to try to be co-dog owners unless it gets too fraught with emotions of the negative variety. I’m already dating, which some might say is too quick since my relationship has only been over for a month or so.  I don’t think so. I had been mourning the loss of this relationship for a long time, thinking about dating a lot toward the end. Now I’m here. It’s not that I’m not sad or am throwing parties that I’m single. It’s that I’m a social person who loves being around people.

I’m not going to let the end of this relationship make me a cynic, I won’t. I still believe in love and part of me will always love the Ex. He and I weren’t right for each other. I don’t see us ever getting back together but I can’t see a life without him in some manner. Maybe that’s early break up thoughts dancing in my head right now but that’s the mentality I have at the moment.

There you have it. I’m at a new job that pays me so much better and has an actual career path. I’m newly single too. Lots and lots of change here in Get Up Swinging land. Hopefully more positive changes will keep happening now that I’m no longer in relationship purgatory or at a job where I was going nowhere.

I’m going somewhere for once. It’s pretty awesome. I’m looking forward to who I meet along the way and who might want to go for the ride with me.

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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.

Why I Am Still Anti-Komen

 

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

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

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

Nancy, Nancy, Nancy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Komen likes misleading statistics

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

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Ugh.   Ugh.  Ugh some more.

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

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

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

Check out my friend, AnneMarie, crunching some numbers.

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I couldn’t agree with this any more.

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

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

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

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

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

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

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

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

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

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

  • Metavivor – 100 percent of your donations goes toward researching metastatic breast cancer, and they raise money by selling merchandise.
  • The IBC Network – Did you know that breast cancer can occur without presenting as a lump? Inflammatory Breast Cancer is mostly detected when the cancer is late stage or tragically, stage 4.  It’s an aggressive cancer, and it’s definitely not one that’s ever discussed during our annual Pinktober.  Terry Arnold over at IBC Network is a tireless advocate.
  • Met Up – This is an activist group, which was co-founded by women who have metastatic breast cancer. Read their goals, get involved.  Help their voices be heard.  You cannot call yourself a true breast cancer advocate if you only want to help the “survivors.”

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

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

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

Pinktober is coming

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

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

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

  • Research > awareness

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

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

Did you know that men get breast cancer, too?

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

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

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

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

  • Think before you pink

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

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

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

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

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

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

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

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

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

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

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

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

Friend: You’re an asshole, Lara.

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

Friend: [Unfriends Lara]

… and scene.

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

How hard is it to tell the truth?

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

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

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

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

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

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

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

 

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

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

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

September 23, 2013 CBSNews.com article reported: 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

15 Random Facts about Me

Nancy over at Nancy’s Point issued out a very fun challenge to her friends and readers.  I decided to play along, too!

1.) According to my father, my mother wanted to name me after a river in Alabama, the Cahaba River.  I’m very grateful that my father always waned to name a daughter Lara.  I was named after Superman’s mother on Krypton.

2.) I’m 35 years old, and I have never been pulled over by a cop for anything, though not that I’m complaining.

3.) Both of my dogs are named after sci-fi characters in my favorite shows – Firefly (Mal) and Battlestar Galactica (Boomer).

4.) I attempted a stand up career in my mid-20s, but it didn’t work out due to a paralyzing fear of public speaking.

5.) I’ve had a personal mantra for years now, and it’s just me yelling “rules” after my last name.  It started out as a joke between my friend and I because we had been watching “Billy Madison.”  O’DOYLE RULES.

6.)  I love watching romantic comedies, even the bad ones.  Boy, do I love bad ones.

7.)  I went skydiving two days before my double mastectomy.  It was the most bad ass thing I have ever done in my life.

8.)  For my 16th birthday, my dad took me and two friends to a comedy club in Kansas City.  When they asked for volunteers, I raised my hand and they picked me.  I got on stage, and it was amazing.  It was the best birthday.

9.) I have a running bucket list.  I hope to run my first full marathon next spring.

10.) I have the movie “Heathers” memorized because I have watched it dozens of times.

11.) I’m afraid of zombie shows or movies.  They give me nightmares, so I don’t know why I started watching the Walking Dead.

12.) During my first chemotherapy, I went into anaphylaxis.  The nurse said that I only had 10 ccs when I started choking to death.  It started out as a horrible dizzy spell and then it felt like God himself sat upon my chest.  Still, to this day, I feel panicky and adrenaline whenever I feel slightly dizzy. I don’t know if it’s PTSD, but it’s something.

13.) I have never wanted to have a wedding, though I’m not anti-marriage.  Since my mother died when I was so young, I have never daydreamed about my perfect wedding because she’s not here.

14.) I took dance lessons for 8 years when I was a child.  As an adult, I have proclaimed that I can’t dance, but it’s a lie.  I can, but see number 4.

15.) I finished writing my memoir, but I keep rewriting it.  I’d like to be done with it soon, perhaps after I finish my first marathon – Get Up Swinging: cancer to marathon.  What do you think?

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.

Pittsburgh Dick’s Half Marathon 2015: my fourth half marathon

When I began my training season for the Pittsburgh Half 2015, I had lofty goals and ambitions.  “I’m going to run the 15 mile race for Spring Thaw.”  “I’m going to run the Pittsburgh half under two hours.”  Boy, I thought highly of myself and greatly underestimated how much free time I actually had.  Neither of my goals happened and yet, I’m okay with it.

Given the sub-zero weather in February and its affect on my training, I only felt prepared to run the 10-mile race for the Spring Thaw.  If I had attempted to run 15 when my weekly mileage was as low as it was, then I would have injured myself.  When I crossed the finish line for the Spring Thaw and receive my 10-miler finisher’s medal, I vowed, “Next year, I’ll run the 15 mile race.”

For the half marathon for Just a Short Run in March, I treated it like a training run and not something I should attempt to PR (i.e., achieving a personal record).  The weather that morning was 15 degrees, and like everyone else, I was shivering and shaking.

cold-frozen-gif

If it wasn’t for the fact I was running with a friend, I probably would have bowed out after the 8.1 mile mark.  My total time for Just a Short Run was 2:28, a minute longer than my first half marathon time, aka my worst time.  Even though I know the freezing weather played a huge part, I still felt disappointed at my time.

In the days leading up to the Pittsburgh Half, I was convinced that I was going to be lucky if I even beat my 2:27 time from last year.  I never made it to any speed workouts, and if you want to get faster, then a runner has to make it to the track.  I didn’t.  Life kept getting in the way.  I was beating myself up – figuratively, of course.

I ended up heading to the half marathon by my lonesome self since I hadn’t been in contact with my fellow West View Fleet Feet’er.  By the time I got downtown and my bag checked, I had missed my charity team’s group picture (boo).  I also didn’t make it to the Steel City Road Runners’ hospitality tent prior to the race.  Nothing really went as planned.

Before the race began, I only ran into one other person I know in my assigned corral.  Thanks to her, I had a before picture of me.  I was there!  (I have looked through many photographers’ marathon pictures and alas, I didn’t find me anywhere.)

Who wears short shorts?  I wear short shorts.

Who wears short shorts? I wear short shorts.

It was around mile 9 when I realized, “Holy shit, I’m going to beat my time.”  I couldn’t believe it!  I was maintaining a pace of around 10:10 comfortably.  I made sure I took water at every fluid station and even took two water cups at a later station.  I took my Guu (aka Gewwww) every four miles.  The hotter temperature wore me down around mile 11, and I had to walk for about 15 seconds to get my hear rate back down.

I crossed the finish line at 2:14:02, beating my previous time by 13 minutes!

b03944a802a40aedce01c6dab24f7a6fNow I’ll definitely be making it to track workouts in the near future.  I’m signed up for three more half marathons, and come hell or high water, I will run a half marathon under two hours.  Just you wait.