Fare thee well, Lisa

A prominent voice in the breast cancer community, Lisa Bonchek Adams, died of metastatic breast cancer last week.  I followed her on Twitter and Facebook, and I read as much of her writing as I could.   She was initially diagnosed with early stage breast cancer.  She underwent all the treatment for early stage breast cancer, including having an oopherectomy.    Lisa writes about that here.   She did everything she was supposed to do treatment-wise, yet she still fell into the 30 percent category of those whose breast cancer recurred stage 4.

As someone with early stage breast cancer, her story is bone-chilling, frightening to me.   My biggest fear used to be developing breast cancer like my mom, and that’s happened.  My biggest fear now: my breast cancer coming back stage 4, and I die at a young age just like her.  Stage 4 is the nightmare.  It’s my nightmare, and at the same time, it’s made me beyond appreciative for my current good bill of health.  I feel a heightened sense of panic and anxiety every time I visit with my oncologist and that won’t ever change.

I won’t turn my back and pretend that metastatic breast cancer doesn’t exist because for so many, my nightmare is their reality.  I have come to accept that this may happen to me, but I won’t ignore the fact that approximately 40,000 die of this disease every year.   I won’t ignore those like Lisa, and so many others who died of a disease packaged up in a prettysexycool pink exterior.

Lisa did not subscribe to the Pink Ribbon Culture.  She was critical of Komen.  She railed against the Pink Ribbon Culture with open, honest talk about the disease, and its effects.  She talked openly with her three children about her disease and its ultimate outcome.  Since I barely remember my mother because my parents shielded me from the last six months of her life, I appreciated Lisa’s honesty with her children.  I wished my parents hadn’t shielded me so much, then perhaps I would have a memory of my own mother.

Lisa also didn’t subscribe to the cancer pep talks, and in a May 2013 Salon article, she commented:

“I don’t need to be told to fight the good fight to beat it or the key is to just stay strong or that it’s mind over matter.  You force me to assert my knowledge, insist upon my diagnosis, explain the desperate nature of my disease, spend my time defending my sentence.”

After her death, a friend of mine with Stage 4 breast cancer posted something Lisa wrote entitled “When I Die” on Facebook.  Here’s a snippet from that post:

Don’t try to comfort my children by telling them I’m an angel watching over them from heaven or that I’m in a better place:

There is no better place to me than being here with them.

They have learned about grief and they will learn more.

That is part of it all.

(For all those who believe that a positive attitude is all you need to beat breast cancer, how would a positive attitude ever trump a parent’s desire to see their children grow up?  Riddle me that, Batman.)

While I often refer to my mother as my guardian angel, the second line really punched me in the gut: “There is no better place to me than being here with them.”  Oh my heart, it hurts.  As a woman whose had breast cancer and the daughter of a woman who died of the same disease, I gained insight into what my mom had to have been feeling as she knew her time was limited.

If you, dear Get Up Swinging readers, want to help those with metastatic breast cancer and honor Lisa’s memory, then you can do so here.

Lisa didn’t lose her battle or a years-long fight.  She died of metastatic breast cancer at the age of 45.  The metastatic breast cancer community lost a powerful voice and advocate, but her words will live on.

Mets Monday: Susan

Susan

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

I was diagnosed in August 28th 2013 after a PET/CT scan. I had just turned 43 years.  My cancer is ER/PR+ HER2-. I don’t have the BRCA mutation.20150223315713253

What is life like as a metser?  

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

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

What type of misconceptions about breast cancer have you encountered? 

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

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

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

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

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

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

Breast cancer is NOT a game

I generally don’t participate in these BUT… Haha, you should not have liked or commented. Now you have to pick from one of these below and post it as your status. This is THE 2015 BREAST CANCER AWARENESS game. Don’t be a spoil sport, pick your poison from one of these and change your status, 1) Damn diarrhea 2) Just used my boobs to get out of a speeding ticket 3) How do you get rid of foot fungus 4) No toilet paper, goodbye socks. 5) I think I’m in love with someone, what should I do? 6) I’ve decided to stop wearing underwear 7) it’s confirmed, I’m going to be a Mommy/Daddy! 8)Just won $900 on a scratch card. 9) Its final, we’re moving to Mexico to be beach bums! Post with no explanations.

Oh dear goodness.  Not this bullshit again.  Why is this still a thing?   Why hasn’t this “game” been killed in a fire? You know what I want to do whenever I see this form of slactivism in my social media news feeds.

hojkokfijt0ujov9lobq

Breast cancer is not a game.  Repeat after me: it is not a game.  It certainly is not a shitty game which tells you absolutely nothing about breast cancer.  For real, what does that game above tell you about breast cancer?  After reading that, did you learn anything about breast cancer that you didn’t know before?  I mean, it’s telling you there’s awareness going on.  What are you aware of now that you weren’t before?  If you didn’t know that breast cancer existed before coming across the 2015 BREAST CANCER AWARENESS GAME, then please give me the address of the rock you were living under.  Were you living in a land free of pink ribbons?  (Take me there!)

You know what I think whenever I see this pop up in any of my news feed: you could care less about breast cancer, and I need to unfriend you right the hell now.  I’m not even kidding.  If anyone who knows me  and what I have gone through (i.e., lumpectomy, chemo, radiation and double mastectomy) can participate in such a game and not realize how demeaning and offensive this is to anyone going through breast cancer treatment.  I never saw what I went through as some cutesy game, and I certainly don’t view my mother’s death from this disease as LOL.

Lisa Bonchek Adams, who has stage 4 breast cancer, wrote this spot-on piece entitled “Breast cancer is (still) not a Facebook game”:

The above instructions are not awareness. This is offensive. Breast cancer is not a joke, awareness does not come from sharing the color of your underwear or your marital status (the whole “tee-hee, wink-wink” attitude adds to my disgust). Even if it ended up on TV, that still would not be educating people about breast cancer they didn’t know before. All it does is show the world that lots of people are willing to post silly things as their status updates.

She also wrote:

Education underlies awareness. To even call something a game and honestly believe it’s doing anything to help any aspect of this disease is delusional.

While you’re playing games, (mostly) women are dying of metastatic breast cancer.   We have been running and racing for a cure that has not happened.   Where’s the cure?  The below infographic is proof of how little most people know, despite all this awareness.

Metastatic_Breast_Cancer__Infographic

50 FREAKING PERCENT believe that breast cancer progresses because patients either did not take the “right” treatment or preventative treatments.  Are you kidding me?   That is unacceptable.  Is this why we treat those living and dying of metastatic breast cancer as some dirty little secret nobody should talk about because most people think they brought it upon themselves?   That is so far from the truth that it should be filed under fiction.

Did you know that 30 percent of those diagnosed with early stage breast cancer have a metastatic breast cancer, i.e., the breast cancer that kills?  WAS THAT FACT RELAYED TO YOU WHILE YOU’RE PLAYING THE GAME?

Awareness does not save lives.  It doesn’t.  Despite recent media articles telling you that breast cancer rates have dropped, don’t believe the screaming headlines.

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

If you or anyone really want to help, tell these Facebook game players to sign this petition.   “I ask that Komen commit at least 50% of total donations to medical research and innovation rather than to awareness and education. I request all other breast cancer non-profits do the same.”  Donate to Metavivor.  Do something meaningful.

Just don’t play these games.  Please.  Can you really play a game making light of the deaths of so many?

Mom10

Positivity Police

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

debbie-downer

That’s not me, I swear!

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

Forced-Smile

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

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

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

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

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

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

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

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

Whatever you’re feeling, it’s okay.

Stories

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

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

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

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

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

See, I did not know that.

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

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

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

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

Wedding2

Is cancer the “best death”?

When the cancer community read the blog “Cancer is the best death,” written by Richard Smith, a doctor, it’s not surprising that it was met with a negative response.

So death from cancer is the best, the closest to the death that [Luis] Buñuel wanted and had. You can say goodbye, reflect on your life, leave last messages, perhaps visit special places for a last time, listen to favourite pieces of music, read loved poems, and prepare, according to your beliefs, to meet your maker or enjoy eternal oblivion.

This is, I recognise, a romantic view of dying, but it is achievable with love, morphine, and whisky.

When I first read that, my jaw dropped and major eye rolling commenced.  Did he describe dying of cancer, or was he paraphrasing a horribly cliched Hollywood movie he just watched?  Didn’t Nicolas Cage star in a movie of someone slowly killing himself with alcohol?

What I can remember about my mother’s death from breast cancer certainly does not reflect Dr. Smith’s romantic view of dying.  My mother spent a lot of time in treatment, or at church or with her family, trying to get in as much time in with her young children that she could.  She didn’t go on some soul-searching journey or adventure to cross off all those items on her bucket list.  She was in treatment for metastatic breast cancer and at the end, she died in a hospital, surrounded by her loved ones.  My mom only lived six months after she was diagnosed with mets.  She didn’t have time to visit any special places, unless you count doctors’ office and hospitals as special places.

Janet Freeman-Daily, a metastatic lung cancer patient who writes at Gray Connections, responded (please read the entire blog):

The reality is that death from cancer often does not conform to Smith’s vision.  Death by cancer happens when tumors cut off your air supply, compress your heart so it can’t beat properly, block your gut so you can’t eat, cause organ failure, erode your bones, press on nerves, or destroy bits of your brain so you can’t control your body or think properly.  Sound painful?  Without pain medication – sometimes even WITH morphine and whisky – it is.

As far as I know, Dr. Smith does not have metastatic cancer.  Ms. Freeman-Daily does, and she writes, unsurprisingly, a realistic view  and description of cancer.  Ms. Freeman-Daily also points out:

Among the lung cancer patients I’ve come to know online through their own posts or those of their caregivers, death can claim patients before they have established financial security for their family, raised their children, finished college — or even had time to recognize that they are dying. Many linger after they’ve lost the ability to do what they love, communicate, or think clearly. Most will eventually find themselves dependent on others for their basic needs while still aware of the emotional and financial stresses their illness imposes on their loved ones.

Some diagnosed with Stage 4 cancer may die within weeks or months of their diagnosis.  Others may live with metastatic disease for years and die after all lines of defense have failed.   I followed the blog of Vanessa T., who recently died of Stage 4 breast cancer.  Her family loved her so very much, and watching her slip away because of the mets to her brain was horrible.  How could anyone see anything romantic or ideal about her passing at such a young age?

Marie Ennis O’Connor also wrote a response to Dr. Smith’s blog:

Not everyone who dies of cancer has this peaceful idealised death. My own mother’s death from brain cancer was  far removed from romantic.  Both men write of a dignified and peaceful death, along the lines of our work here is done on earth – but what of the young mother with metastatic cancer who desperately wants to be there for her children growing up? Is love, morphine and whisky enough to ease her pain?

The most offensive, mind-boggling part of Dr. Smith’s blog post was this:

But stay away from overambitious oncologists, and let’s stop wasting billions trying to cure cancer, potentially leaving us to die a much more horrible death.

I will contend that there are probably cancer patients out there who continue with various treatments, only to make their remaining weeks or months excruciating and painful.  They might choose to do so because they feel pressure from their families to continue on, or they are relying on possible false hope given by medical professionals (possibly the “overambitious oncologists” Dr. Smith is referring to?).  You know what, though?   If a patient does make that choice and they are of sound mind, then their decision should be respected, not pitied or judged.   To take away someone’s hope, no matter how unrealistic it may be, would be cruel.  Perhaps an oncologist may be overambitious, but what if the patient wantthat type of attitude and approach?

Nobody knows what they will do when faced with the hard decisions that terminal cancer patients deal with during their treatments.   As much as I loathe the word, I will use it here: dying is very much an individual journey.  I pray that those facing these decisions aren’t pressured to keep going on if they want to just live out their remaining days without debilitating treatments.  When terminal cancer patients decide it’s time to stop, those decisions should also be respected.   People should be allowed to die with dignity.  These broad statements, like the one Dr. Smith makes, implies that terminal patients should just check items off their bucket list and die already.

I will never ever agree with the statement that we should stop “wasting billions trying to cure cancer.”  Nope.  Cancer research has saved lives and will continue to save lives.  The money being spent and used on cancer research is priceless to those with metastatic disease  who don’t have the gift of time or people like me, in remission, who pray to God that my disease doesn’t come back.

But it’s not like I have a choice in the matter.  Cancer doesn’t work that way.

Backbone

Backstage at a dance recital when I was in the fifth grade, two girls took a toy away from me and decided to play keep away.  They tossed the toy back and forth with me in the middle yelling, “GIVE IT BACK.”  When my protests didn’t yield the result I wanted, I stomped on one of the girls’ foot and shrieked, “I said… GIVE IT BACK.”   Since I stomped on her foot with my high-heeled tap shoe, she quickly handed over my toy, and I walked away in victory.  I never did like the keep away game.

Two years later, in a seventh grade history class, Austin, the kid who sat behind me, decided to be a dick (or a typical 12- to 13-year old) and pull my desk away from me when I sat down.  As expected, I fell down, and everybody in the class laughed at me.  I got up furious.  Austin laughed the hardest, and I’m pretty sure my face turned red in rage and embarrassment.  I picked up the binder from his desk and threw it across the classroom.  Well, Austin’s binder was full of nothing but loose leaf paper, and all the papers went flying every which way.  The history teacher, who saw and heard everything, stood up from his desk and ordered Austin to go outside (after he collected all his paper, of course).  He protested and said, “Why isn’t Lara going outside?  She threw my binder!”  The teacher replied: “You started it.”   I felt vindicated as I watched him sulk outside the classroom.

As I went through middle school and high school, I slowly lost that fight I had in me.  In middle school, I was openly ridiculed and laughed at by my peers.  They would point and laugh at me, and call me all sorts of names, with an emphasis on how ugly they thought I was.  However, my story is certainly not a unique story.  Puberty is a bitch, and anyone who comes out of adolescence unscathed is lucky, lying or the one who did the name-calling.

Routinely hearing how others think you are the ugliest thing they had ever seen, does take a toll on you.  It’s like every time someone decided to put me down to make themselves feel better, they took a piece of my self-esteem, backbone from me.   I learned to keep my head down and to stare at the floor because sometimes making eye contact with them, just fueled the nastiness in their heart.  I internalized these insults, these unwanted names (again, not atypical for young teenage girls).

I am hideous.

My hair is a mess.

Ugh, my teeth are messed up.

During college, I slowly got some of that fight back in me.  Usually, though, these instances were just examples of me being young, stupid and drunk, aka a typical college student, but these moments of backbone were motivated by my desire to stick up for a friend.  Once at a bar, I totally lost it when this random guy was saying obscene, offensive things to my roommate and best friend.  The dude was just being nasty, and he was not taking the hint from my friend that she thought he was nasty.  Me, being young, stupid and drunk, told him off, and our fight quickly got ugly.  After I called him out for being a nasty creep, he of course had to call me a bitch and then an ugly bitch (because the worst insult a woman can be called is ugly – yawn – or a bitch).   This guy and I had to be separated after I got in his face.

A year or so later, I tried to stick up for this friend of a friend who was being dense and not noticing or caring that he was invading another guy’s space.  I said, “Hey, it’s cool,” to the guy who was losing his temper and threatening the dense friend of a friend.  This guy growled at me, “Bitch, shut the fuck up.  If you say another word, I will beat the shit out of you.”  I believed his threat and became paralyzed in fear.   The guy who threatened me was escorted out of the bar after my friend got me to tell her why I was shaking in fear, and she told the bouncer.

As I got older, once again, I lost that fight, my backbone just fading away.  I never stuck up for myself against certain individuals, who would treat me like a doormat.  Now and then, I would argue or walk away instead of letting someone boss me around or treat me poorly.  I didn’t fight.

I compromised.  I played nice, even when I was mad or insulted, and bit my tongue, even when someone said something unkind.  But if you keep doing that, as I learned, you let others think it’s okay to talk or act a certain way around you.  By playing nice, these negative people learned it was okay to treat me with little to no respect.  I mean, why not?  It’s not like I would ever say anything.

Then breast cancer happened.

After five surgeries, seven weeks of radiation, four months of chemotherapy, one anaphylactic reaction (and a partridge in a pear tree), I became a shell of myself.  After I emerged from the wreckage that is cancer treatment, I had to rebuild myself.  My priorities and perspectives changed, and much to my surprise, my fight came back.   I guess, when you deal with insurance company bullshit, plus all the stress that comes with managing your treatment, appointments, job (if applicable) and personal relationships, you have to have some backbone.   My fight definitely came through whenever I had to make repeated calls to Aetna and fight them over their most recent bullshit claim denial.   My backbone reappeared when I let friendships that should have died years ago just fall by the wayside.

In recent months, I have stuck up for myself in ways I had never done in my adolescence or early adulthood.   When I felt hurt and offended by a loved one, I told that person that they hurt me and why they hurt me.  Although I received a negative response, I felt better because I expressed myself and my feelings are valid, even if they make someone mad.   When someone confronted me for what I wrote (and to be fair, what I wrote was passive aggressive and uncalled for), I stood up for myself and didn’t back down from what turned out to be a nasty fight.

Don’t get me wrong – I’m not going turn into some Bravo Reality Tv Housewife and start flipping tables and screaming obscenities.  I’m certainly not going to be physically fighting anyone (yikes!) or creating Youtube videos telling my “haters” to suck it.   (Waaat.)   It means having professional goals and aspirations and fighting for them.  It means I’m not going to care about how many friends I have – just about the quality.   It means I want to have authentic relationships with my loved ones, which means expressing my feelings instead of swallowing them.

It means I’m going to stand up for myself, no matter what – because I’m worth fighting for.  Since I’ve already ran two half marathons and additional long races, I know I have some fight in me.

Diem Brown

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

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

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

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

Michael Wosnick wrote about the battle metaphor:

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

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

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

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

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

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

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

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

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

1 in 8

During this year’s Pinktober, did you happen to come across the “1 in 8 women will develop breast cancer in their lifetime” statistic?  Here are three screen caps with this statistic:

1in8-breastcancer.org

Now from the American Cancer Society’s website:

1in8-cancer.org

A Komen affiliate website:

 1in8

I actually learned recently that this 1 in 8 statistic is actually a teensy bit misleading.   Lifetime risk isn’t the same of your actual risk based on your age.  You know what blows my mind?  I found actual scientific information explaining this statistic on Susan G. Komen’s website (I know, knock me over with a feather):

Women in the U.S. have a “1 in 8” (or about 12 percent) lifetime risk of getting breast cancer [4-5]. This means that for every eight women in the U.S. who live to be age 85, one will be diagnosed with breast cancer during her lifetime.

Absolute Risk Komen

Source: Komen

So next time you come across the “1 in 8 women will develop breast cancer in her lifetime,” keep in mind the second part of that statement: “who live to the age of 85.”

I don’t know why charities and organizations use that statistic so much and with little explanation.  Maybe they want to scare people into thinking breast cancer is going to happen to everyone or maybe they don’t really understand the lifetime risk vs. absolute risk?

My friend AnneMarie, over at Chemobrainfog, wrote:

One in eight is a good springboard for a fundraising campaign.  It makes for a great way to terrorize those who do not understand that the number applies across your entire lifetime and it increases with age.  As you are seated around your table with eight family members of different generations or eight close friends, don’t try to figure out who, unless you also incorporate WHEN into the equation.

There are certain factors that increase your risk of developing breast cancer, and I fell in several of those categories: family history, dense breast tissue, certain benign (not cancer) breast problems and not having children (and related to that, not breastfeeding).  No doubt that these factors definitely increased my risk more than the 0.4 percent figure stated above.    Plus, now that I’ve had breast cancer, I’m also at an increased risk for developing breast cancer again.  Since treatment ended, I have made changes to my lifestyle, such as running and not drinking alcohol, among others, to minimize my risk because I never ever want to go through that again.

Cancer can often feel like a numbers game, although many doctors and specialists in the field will emphasize that you are an individual, not a stat.  When you fall on the bad side of these statistics, these numbers almost seem cruel.  I had less than one percent chance of going into anaphylaxis during chemo, yet that happened to me.  Cancer is definitely not something I ever wanted to be unique at.

I truly believe it’s important for us to know our risks and what we can do to minimize our risks for developing breast cancer.   First, we need to fight through the Pink Ribbon rhetoric seemingly designed to scare the general public with statistics without little or no context.