Shout Down the Fractured Pink Fairy Tale

Join us for the Second Annual #BreastCancerRealityCheck Thunderclap campaign. In 2016 our message had a social media reach of over 200,000!

The #BreastCancerRealityCheck tweet: “Breast cancer stories are NEVER pink fairy tales. ~1,430 die per day. Tweet your truth!” will be sent out by the automated Thunderclap system at 10amPDT/1:00pmEDT/6:00pmBST on Saturday, October 7th from everyone who signs up.

Click image to sign-up for the Thunderclap!

The more people you sign up, the more ‘social media reach’ it gains as it will go out to all your followers–and maybe they will sign up and reach their followers, and so on…

Then There’s the Twitterstorm

After the automated Thunderclap tweet goes out on Saturday, October 7th it’s your turn to get tweeting!

For an hour, starting at 10amPDT/1:00pmEDT/6:00pmBST, please use #BreastCancerRealityCheck to FILL our timelines with info and personal stories that:

  • Move beyond superficial “raising awareness” to focus on more education and research that will SAVE LIVES
  • Dispel the myths about prevention and early detection
  • Reveal the candid realities of people (women and men) living with ALL stages of breast cancer
  • Provide less-known, harsh facts about secondary/metastatic breast cancer
  • One of Breast Cancer Awareness Month’s favorite ‘pink fairy tale’ messages is that early detection saves lives. But what most people still don’t know is 20-30% of all early stage breast cancer will become metastatic breast cancer. THAT is the killer.

You can do your part to help stop that killer. Sign up for the Thunderclap tweet campaign. Participate in the one-hour twitterstorm. And keep using the #BreastCancerRealityCheck hashtag for the rest of October and beyond!

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Reality Trending

I sit here a few hours away from the start of Pinktober, hating myself for writing Pinktober, because all I wanna do is buy Halloween decorations, costumes, pumpkins, peruse candy selections, and put on my new purple-with-bats-on-it dress. I want to immerse in Halloween. In fact, in a few minutes I will watch The Wolf Man (the Universal classic Lon Chaney Jr. version of course) on some silly old-timers TV channel.

burnribbonburn

But I was reminded throughout the day that breast cancer awareness wants to quash my orange gourd dreams. And it has just been too hard for me to let that pass. Too many newly diagnosed cancer patients, too many people dying, too much crass opportunism profiting off of “my” disease. Too many brews and boobs events being advertised as I wander around town. Worse, a local support group sent out a newsletter referring to October as “our” favorite month of the year, since it is “our” month. I had to laugh, knowing so many friends who LOATHE it.

So we have to speak up, speak out, and try, TRY again, to inject some reality into this madness.

Stay tuned this week to sign up for our Thunderclap. We hope to get #BreastCancerRealityCheck trending next Saturday, October 7. We ask everyone tweet the heck out of the hashtag during the 30 minutes before and after the scheduled Thunderclap; hopefully the concentrated tweet storm will get reality trending.

We Still Need A Reality Check

We still need a #breastcancerrealitycheck. Let’s do it again. October 7, the first Saturday of the month. Let’s flood all social media #breastcancerrealitycheck. It worked last year, we got noticed (Huffpost UK and The Daily Mail). Let’s make even more people listen. We need to make people AWARE of the reality of this disease. We look forward to the day this is no longer relevant, but until then, we’ll do this annually.

Here are some reasons why we still #breastcancerrealitycheck need :

  • Because the myths of “early detection and/or mammograms save lives” still persists.
  • Because “awareness” of breast cancer is not enough, is NOT “saving lives”.
  • Because we lost too many friends in the past 12 months, since 1,430 people die of metastatic breast cancer each day around the WORLD
  • Because breast cancer is still not pink/fluffy/a party/an opportunity for anyone to use cause marketing to sell their brand.
  • Because breast cancer is over-sexualized and we are tired of seeing perfect, healthy breasts shoved in our faces to “call attention” during Breast Cancer Awareness Month
  • Because Pinktober threatens to suck all the joy out of Autumn: PSLs, jack-o-lanterns, tricks-or-treats, and drench the lovely colors of falling leaves in pepto-pink

What about you? Do you think Pinktober is real enough now—or still selling a fantasy?

Stay tuned to sign up for our Thunderclap and more details.

Immodest Proposal Day

I’m just gonna copy and paste a 4 year old blog post here, I’m not gonna do much actual writing or work. Why is the Cancer Curmudgeon such a damn broken record? Because people don’t change, won’t GROW THE FUCK UP about breast cancer.

Well, some stuff changed. I’m kinda not raging about No Bra Day here so much as the fact those Facebook secret status games are popping up and annoying people. Not me–most of my FB friends are other cancer patients who hold my views. I’m not being superior–I just don’t make friends easily and my cancer tribe is small, but I love them fiercely. (Y’all know who you are.)

So yeah, I once suggested instead of no bra day how about what cancer really does to breasts day–baring one’s scars I guess some would consider immodest. Not me, I don’t care really.

I re-read this rant and was like, geez, I threw everything but the kitchen sink in here. I even see that I was toying with the warped warrior metaphors in cancer-speak. I don’t think the warrior language commonly used is realistic in actual military sense–but I’ll expand that notion later, I swear, I’ll get around to it soon.

But the 2 things I wanna highlight right now especially those newer in CancerLand–don’t be alarmed by all the women in “awareness” ads with strategically placed arms over their HEALTHY, non-cancer, breasts. Culture demands women be sexy in awareness ads, but women with scars cannot be sexy, they are reduced to being brave-strong-warriors with beatific smiles. Gag. Second thing, there will be a day again this year like last, a reality check day, we are planning, details coming soon. We WILL inject some reality into the fantasy our culture keeps insisting upon.

How About a “What Cancer Really Does to Breasts Day”?

I wasn’t going to write about No Bra Day, because 1) so many other blogs I read have said most of what needs to be said, 2) why should I give it more exposure and attention, and 3) I wrote an overly long, overly wordy piece this summer already, back when there was this other No Bra Day (how many are there?!). The earlier piece, I Don’t Want to See It, is mostly crap I wish I had not written, only the final 5 or so paragraphs are worth reading, and some of the sentiment of those will be repeated here.

I changed my mind because as I started mentally ranting I realized that ignoring it won’t make it go away any more than giving it more attention will (more on this theory, keep reading). It deserves all the outrage that can be had.

Who the hell organizes these No Bra Days? There is no organizational name on that graphic (everyone has seen it I’m sure), so I guess it is just some idea someone passed around on Facebook (sorry, I still cannot have a FB page for personal, non-cancer related reasons, so I’m dim on Facebook things). How the hell does it benefit anyone? Don’t bullshit me and say it raises awareness, especially when the top line of the graphic reads “support breast cancer”. Sounds like the purpose of the day is to increase the incidence of breast cancer—the graphic doesn’t even bother to discuss support for patients in any way.  It’s just another excuse to sexualize a disease, and to be childish and talk about boobies. Again.

What I am saying is divisive and angry; I know and do not care. I am so fond of the quote “just because you’re offended, doesn’t mean you’re right,” (Ricky Gervais) and I know that just because this event and the participants offend me, I’m not right. Lots of folks, including breast cancer patients, think all this is just fine, so it is doubtful that this event will cease to exist. But I AM offended and right or wrong, I’m going to gripe about it.

Setting healthy ta-tas “free” doesn’t support this breast cancer patient, again, not that this event even bothers to pretend to support any patients, it is supporting breast cancer, remember? It just reminds me of what cancer did to my breasts, and to other breasts. The scars, the ugliness, the pain and surgery. Need I go on? While I can begrudgingly accept that people who donate or participate in Pink have good hearts even if I hate Pink, I have NO appreciation for anyone involved in No Bra Day. Do NOT expect any gratitude or applause for the participation from me. I’m glad that these women are still healthy, still have breasts unmarred by cancer, but I really do not want to be reminded of what I lost. To those who organized this No Bra Day, I consider you insensitive, thoughtless jerks.

I know this day, the participants, and whoever organized it will get praise from many corners—but a quick scan on Google and other blogs gives evidence of some criticism about this event. I wish there more outrage about it. While I have no hope these days of the Pink machine slowing down, I yearn for more concrete ways to express my extreme dissatisfaction. This No Bra Day is one of the most egregious examples of how a disease has become the plaything of an adolescent, boobies obsessed culture.  If I were rich, I’d buy a million very covering and very supportive bras and throw them—well, somewhere, since there is no physical headquarters for this idiotic nonsense. Maybe I’d just scatter them about a big city street, to stop traffic and get everyone to see how at least this one breast cancer patient really feels. Sure, that would just be me throwing a childish tantrum—but the organizers have proven that they are not emotionally or intellectually adult enough to understand the lengthy, smart essays criticizing the event.

Source: etsy
Source: etsy

Why doesn’t someone come up with a “What Cancer Really Does to Breasts Day”, gathering and presenting all the pictures of so many bloggers (myself included, I would do this) in various stages of lumpectomy/mastectomy, reconstruction or no reconstruction? There are certainly plenty of said pictures on the internet. I get why established groups or projects cannot do this—with establishment comes the need to “play nice”.  Being a socially awkward, complaining Curmudgeon—in real life and in the blogosphere—means I seem unable to play nice.

I’m sure many would find a “What Cancer Really Does to Breasts Day” objectionable and offensive (see this is where I can use the Gervais quote to my advantage). But here’s the thing: not wearing bras, or even those “tasteful” Pink ads featuring topless, strategically covered, healthy-breasted models for that matter, do nothing to make anyone understand the reality of breast cancer—other than show off what to those who objectify boobies will be “missing” should cancer afflict any of these women. The current socially acceptable image of breast cancer is the bald-headed woman in a pink t-shirt at a run or walk, smiling and being strong. To me it’s like a sick before and after scenario: women before cancer can be sexy and flaunt naked breasts for cancer awareness, women after breast cancer surgery need to keep covered, need to become unsexy soldiers to admire for bravery, but not to be desired.

Seeing what breast cancer is capable of, and what women who’ve had scarring surgery are capable of, seems more logical and helpful to me. On a personal level, it certainly would’ve helped me when I was recovering from surgery and follow-up radiation, wondering what to do. Instead I saw bikini clad women in ta-ta breast cancer ads, and felt horrible, my emotional wound constantly re-opened.

I loathe the battle language in cancer, as I’ve mentioned often enough throughout my posts. What I hate most is that it is used mainly to blame “soldiers” who’ve “lost their battle with cancer” because they “didn’t fight hard enough.” I rarely see war talk applied in terms of a grand battle plan. Why isn’t it applied here? A good general goes into battle prepared, knowing as much about the enemy as possible—their weapons, strategies, the size and the location of the enemy, and what the enemy does to prisoners. Would it not make sense to show what the “enemy”, breast cancer, does to these “soldier” women? How can this proverbial “battle” be fought if everyone is refusing to acknowledge the “battle scars”? Oh right, we’re not supposed to be victims or prisoners, cancer happens to us, but there should be no lasting mental effects, and no one wants to see the scars (as the summertime fracas with Facebook and the surrounding conversations proved)—we either win or lose, and it’s all on us, even if the weapons (medicine) fail the soldiers, no matter how hard we fight. Yes I’m being sarcastic.

This mass delusion of only showing healthy breasts in regards to breast cancer has got to stop. Yes, it is good to think positive, to dream, and to champion the bright side of life—even if a Cancer Curmudgeon just won’t do that. But to completely ignore the reality, to not face the ugliness or pain cancer brings, I assure everyone, it doesn’t make the ugliness or pain cease to exist. Furthermore, wouldn’t seeing pictures of women ALIVE after scarring surgery be, I don’t know, positive? I remember being told on HuffPo this summer that these scars should not be shown. Hope she never has to go through it, hope she never has to see that ugliness in the mirror, hope she never needs to see my example of one who turned an ugly scar into a triumph.

I prefer to know what I’m up against and I’m tired of a socially acceptable conversation about cancer in which everyone covers their eyes and ears, singing “la la la”, like nothing bad ever happens.  Sometimes, ignoring the bad stuff only results in a sucker punch later.

Only three types of people tell the truth: kids, drunk people, and anyone who is pissed the fuck off.” –Richard Pryor

Sometimes people don’t want to hear the truth because they don’t want their illusions destroyed. –Nietzsche

 

Annual Summer Blog Challenge Accepted

I’m a little late to the party but still want to participate in Nancy’s Point’s Summer Blogging Challenge!

See my participation answers for 2015 and 2016:

OK, here we go, answers to Nancy’s questions:

  1. Share anything you want about your cancer diagnosis (or your loved one’s). Share your age, cancer type, stage, when you were diagnosed, family history (if any), your reaction, how you learned the news, or whatever you’re comfortable sharing. 

I went for my first ever mammogram in August of 2010. My maternal aunt had just been diagnosed with Stage 3 breast cancer. Her mother (my maternal grandmother) and aunt had had breast cancer as well. My grandmother was diagnosed with it as she was dying of heart disease, so was never treated for her cancer. Given that both my aunt and mother are on medications for blood pressure and heart issues, I always thought that was my bigger risk.

At any rate, that first mammogram received an “all clear” letter. A few weeks later I noticed my left nipple inverting. After a day of going to my new gynecologist (since the one who’d ordered the mammogram had suddenly left her position), and subjecting myself to numerous tests, well….turns out I wasn’t really “all clear”. On October 25, 2010 I learned via phone call I had breast cancer. An MRI ultimately proved it was about 5x6cm, biopsy proved it to be estrogen and progestogen negative, and HER2 positive.

I turned 39 years old on October 29, 2010. Starting in November had chemo, then surgery, then radiation (along with Herceptin infusions, simultaneously). I finished treatment in January 2010. I quit my 60+ hour a week main job to focus on my side hustle, and control my work load. I was exhausted

2.What is the most outrageous thing someone has said to you about your (or your loved one’s) cancer?

Someone told me just to “cut them off”. Ultimately I didn’t do that, I opted for lumpectomy. I’d often thought that about breast cancer patients before my own diagnosis. I found it harder to do when faced with the reality of it.

3.What is your biggest cancer pet peeve? I know it’s hard to choose, as there are many to pick from, right? But what irks you the most?

The sheer unwillingness of most people to understand and/or accept how complex cancer is. It’s not even the fact that people DON’T understand there are several types of breast cancer, not to mention the thousands of other kinds of cancers—it’s the fact they seem to glaze over or look at me like I’m lying when I try to explain E/P negative & HER2 positive. I remember being SHOCKED being in a room of about a dozen other women who had breast cancer, and when I introduced myself and stated my stage and kind of cancer, they had no idea what I was talking about! The nurse leading the seminar had to explain the different kinds of breast cancer. After that I pretty much gave up on local support groups—too uneducated and UNWILLING to learn.

4.What is something you want others to know specifically about breast cancer?

See above. And also, that it is a slog.  A marathon not a sprint. It takes a year or so for treatment and then more time to recover from treatment. It ain’t the damn flu.

5.If applicable, do you worry about recurrence rarely, from time to time or a lot? What is your biggest worry today, right now, this minute?

Always. I especially worry when I feel run down or “off”, like I have been lately. It gets hard to remind myself I’m probably just exhausted because of other stuff in life.

6.Do you feel cancer has made you a better person? Yes, I know this a loaded question. If you do, specifically in what way?

NOOOOOOO! It DID, however, release my inner Curmudgeon. Which is fine.

7.What is your favorite cancer book? (No, I’m not fishing for mentions of mine!)

The Emperor of All Maladies:  A Biography of Cancer, by Siddhartha Mukherjee. Haven’t read many others. I listen to books more than reading these days. #dogwalkerlife

8.Besides your family, where do you turn for emotional support?

Online support more than anything. After all this time blogging, I’ve found my “tribe” of like-minded cancer patients, former and otherwise. A relief.

9.How many cancer blogs do you read and why do you read them?

I don’t know—less than I would like, and less frequently these days. Because I’ve turned to political activism lately, I lack the spoons I’ve had to be as involved in online cancer communities. I hope to return soon.

10.Do you call yourself an advocate? If so, what drives you?

I have a fraught relationship with the idea of calling myself an advocate. I see the work of folks at METUP and how many political and other ties people like that have, and I’m just like, yeah, I can’t do that. I write my blog, I fuss and throw a fit, I muddle along. I accepted the mantle finally last year when I helped bring the #breastcancerrealitycheck tweet storm to fruition. Yes, we’ll do it again this year—working on it now. Also, participating in my local Indivisible showed me how much I learned as a cancer “advocate”, so I realized that yeah, I am an advocate. Ha ha, those cancer lessons—always the crazy stuff with me. Never touchy-feely crap like “life is short, love everyone”. For me always scratchy-bleedy. Just the way I like it.

What drives me? Oh, nothing short of a complete overhaul of the way society thinks about cancer. That’s all, nothing much.  HA!

OK, that is some stuff about me in a nutshell. Hope to back soon with more blogs describing the musings of this cranky-pants cancer patient.

 

Dear 115th US Congress, Please Stop It

Seriously. JUST. STOP. IT.

Do NOT attempt to keep repealing The Patient Protection and Affordable Care Act. Yes I used the real name, to remind us all what it was meant to do, even though, yes, it failed on some counts (more on that in a minute). I will NOT use the nickname everyone uses derisively, although I am forever grateful to that president.

I am tired. I am tired of living on tenterhooks. I am tired of my phone buzzing with various news alerts, and the constant notifications of tweets by Andy Slavitt, Sarah Kliff, and others fighting the good fight, explaining what the hell is happening, how it will impact regular and poor Americans like me. I’m tired of worrying ALL OF THE TIME.

I know, I know. I could turn off phone notifications. I don’t have to wade into Twitter, to be so involved. For starters, I am utterly dependent on ACA remaining the “law of the land” and I do not have the luxury of tuning out. I worry when the notifications are NOT happening too. I have to remain involved and engaged, to do whatever I can, no matter how small. It is frustrating I cannot do more—I would’ve been in Annapolis or D.C. today for Lives on the Line, but I have to work. That’s the breaks you are poor, you are a member of the gig economy and you have to hustle all the time. I just want to slap people who tell me to “turn it off” for a bit. I always notice the people who say that to me can afford health insurance, can afford my services, can afford to go on vacation.

And frankly I am proud to be involved even the little bit I can. I get up every morning and search the news and tweets. And it is horrible. Then I write the tweets for my local Indivisible group. I want to do this; NEED to do it. Because I’d be reading that stuff anyway—might as well use it, make a small contribution.

Since November I have not had one night of sleep in which I did not keep my mouth so clenched I did not wake up with a headache. The past few months have been alarmingly like the two weeks in early 2014, when the new imaging center I used thought I had a recurrence. That wait for the MRI, then the wait for the results–agony. I could barely function. The only thing different now is I’ve learned how to function a little bit.

But I am always in a shitty mood.

There was a tiny bit of reprieve early Friday morning, when 3 Senators voted no. And nearly 48 hours later yet another, a new proposal is being floated to once again repeal the ACA. On top of that, as I write this, the wanna-be Dictator is threatening to de-stabilize the insurance market. Does anyone even understand they are playing with our lives?

THIS. IS. NOT. A. GAME. You all are threatening my life. And I don’t just mean “life”—why is death always the metric. I mean how I die, with a roof over my head because debt hasn’t rendered me homeless.

I’ve written on this blog a little bit about heart disease—readers will know my family has a history of heart disease. My maternal grandmother was diagnosed with breast cancer (left untreated) while she was dying of heart disease. This was one of the reasons I was so blindsided by my own diagnosis. I get frustrated that women’s heart disease awareness movements “use” breast cancer to prove that heart disease is the bigger killer. But right now, I’m thinking this stress will give me a heart attack, maybe I should worry about cancer less? Will I survive a heart attack? What with all the heart damage Herceptin gave me?

The constant stress this administration causes me might kill me, and I’m not being hyperbolic, I HATE hyperbole (though I’ve had to use it lately). Maybe that is the plan—then I guess I won’t care if the ACA gets repealed.

And to be clear, it is this constant living in limbo that I’m speaking of here right now. I’m not even going to touch on the other stuff happening that is giving me worry—the threats to freedom of the press, the clear direction to authoritarianism that we are taking, my very real fear that the American democratic experiment is ending.

So I beg this Congress, stop it. Be the deliberative body you are supposed to be. Who do you serve, WHY do you serve? It isn’t supposed to be about “winning at all costs”, it’s supposed to be about serving us, The People. When so many people are telling you they will hurt—LISTEN TO US.

Yes, I know the ACA hurt many people. So figure out a way to fix it. I cannot believe I am advocating for, or defending insurance companies—the people I fight with on behalf of a provider (as a medical biller). There is a great deal of work to do, so stop with the shit-proposals. Find the way. You are supposed to be smart.

So please, Members of Congress, hear my plea. I want to live. I’ve lived through cancer, I know how much it costs (yep, even before the ACA it was too expensive—Obama didn’t cause that, greed did, read some literature about this). If my cancer comes back, especially metastatic, I’d like to live as long as I can, at least comfortably. I’d like to NOT bankrupt my family. Everyone threatened about government death panels back when the ACA was being written, remember that? Do you even understand that YOU have become the death panel now?

Stop it. Please. I need a break.

 

Live! From a BCAction Webinar! Cancer Curmudgeon!

bcactionYep, I will be talking at y’all live on Wed, May 31 via a Breast Cancer Action webinar. As a panelist for The Case for Universal Healthcare, I will tell my experiences as a breast cancer “survivor” in the gig economy, in a rural area without a lot of choices in healthcare. BCA kindly asked me to provide the example of how policy impacts real people. Diljeet Singh, MD, DrPH, gynecologic oncologist with the Mid-Atlantic Permanente Medical Group and national board member of Physicians for a National Health Program (PNHP), will do the heavy lifting, and explain the real details we all need to hear.

As a life-long resident of Maryland’s Eastern Shore, you’d think I have the accent like so many other here have–sounding like I got a mouth full of crab cakes and oyster fritters. I don’t–at least I don’t think so.  I think y’all will be able to understand me. I do get angry about this topic though–so, um, be warned, I’ll try not to sound too strident.

The thing is, blogging suits me. I’m much better at going on and on and on here in written words. I’m naturally shy and introverted. Being this public and actually talking to strangers is difficult for me. But the stakes are just too high, so the choice was clear for me to accept BCA’s offer.

I have tried to keep politics out of my blog to a degree. But in November that began to change. And a few weeks ago, the House of Representatives made a threat to my life. I’ve always loathed the “warrior” language in cancer; but I use words like “fight” so much more now. Because I AM fighting, very hard. I was complacent before–not anymore.

I know some of you out there do not agree with my politics, and that’s one of the reasons I’ve just kind of stopped writing this blog. It’s just too complicated and I found other outlets for my anger. But I do think this is an issue to be discussed. I hope you’ll come hear me out. See where I’m coming from here.

There is still time to sign up HERE–and if you cannot tune it at the appointed time (6 PM Eastern), you can watch it later, but you gotta sign up!

Hope we meet on Wednesday!

CC is AWOL

I’ve been absent because of American politics. As I’ve mentioned on Facebook, I am working on a new blog to channel those thoughts elsewhere so I can keep some of the divisive politics off of this blog–but there WILL be some crossover.

I’ve been busy with a couple of other politics-related projects but will return soon. Until then, a re-post for a reason.

The D Word

A/N I started this post a week or two ago, but thought it would be taken as offensive. But I read a couple of things since, including Nancy’s Point and some horrible comments on Huffington Post that have renewed my desire to speak out to explain why, for me, sugarcoating death is so repugnant. Please click the link and read Nancy’s post, as well as the other post she links by Dr. Wosnick. Those are much nicer, more eloquent thoughts than the ones I express here. What I’ve written here still is a bit offensive, I even offend myself with it, but I think the topic is worth discussing.

The d-word….

No I do not mean dirty words like the f-word or the b-word (you know I have no problem just putting those actual words in here). But I meant death/dead/die.

It is strange that we avoid saying dead or died, yet, at least here in this rural area in which I live, some mourn quite publicly for a long time, perhaps morbidly so. On any given day I drive down a road and see at least one car with one of those “In loving memory” stickers, complete with date of birth and date of death. Or I see those tiny imitation grave sites that develop at the site of a car crash, off to the side of the road, complete with flowers, pictures and other kinds of things one puts at a tombstone (I assume other trinkets are also at a grave site) . So, those who engage in this very public mourning and memorializing are acknowledging quite obviously that the loved one is dead…yet in conversations many would say “so & so passed away”? In the example of the stickers on cars, it looks like an advertisement that the person is dead, but no one will actually say “so & so died”.

Why do we avoid saying “so & so died”? We say we lost someone, or they went to the light, into that good night or—hell I’m guilty of it too, I once said right here on this blog someone was “gone”—as if he just went to the store for milk or something. See how quickly my mind changed about the euphemisms? Lost is the one that really disturbs me, because in my literal mind, I may know that the person is dead, and I immediately assume the body was misplaced.

I find these euphemisms silly, and annoying. I especially hate them in Cancer World, where there are combined with the warrior/military language. Given the fact that both here on my blog and in real life I’ve been called “honest”, “candid”, and “direct”, is it really any surprise that I say any of this?

Or is it just in Cancer Land that the battle phrase is used? I’m not sure I’ve ever heard anyone say their friend/loved one “lost their battle” to heart disease, to stroke, to complications from surgery, to old age (although many of us wage war on that one, don’t we, with our make-up, night creams, etc.?). Although I will say I often hear someone had a heart attack. “Is he ok?”, “No, he passed.” See, no d-word again.

But of course, the battle language of cancer must be upheld, and it is all part of the blame-the-patient package. The patients must be responsible for all aspects of their special cancer…their poor diet/drinking/not having kids caused cancer in the first place, and in the event of death, it is NOT due to the treatments not being effective enough, oh no, it must be because the patient had a bad attitude and/or did not fight hard enough, therefore making him/her a loser.

The reason I insist we need to say the d-words is because it needs to be up-front-and-in-your- face that cancer kills, in an active, personal away. To say one of us lost the battle, like we are bad soldiers, is an insult. It has been said before and I simply parrot it here: I’m NOT a soldier although I suspect my body is a battlefield in which cancer and treatment fought one another bitterly. I was just kind of…there, getting the environmental impacts, like a scarred landscape for instance.

Like Nancy’s mother I do not want the obituary to say I passed away after the battle with cancer (although I do not presume to know why she said that or what she wanted instead). If I die of cancer before I reach the average age at which American women die, then it is cancer that killed me and I want that known.  I want it known that cancer killed me, that medicine and lack of research into prevention failed me, I did not fail in the war.

So for me, no passing away, no losing of any battles, no raging against the dying of the light. Death from cancer is not the time for poetic language, if I’m the one doing the dying.

When Nirvana Went Number One

This post has taken me nearly 3 years to write. I kept starting and stopping because it is personal and about a difficult time I did not wish to revisit. I did write a couple of posts about that space of a week in 2014, when I was called back for additional screening, to be “sure” about a “suspicious area” on a mammogram that might have indicated recurrence. I wrote about my annoyance with the word “hope” (I still don’t really like the word) in Complicated Relationship With Hope, and about the outcome of that MRI (no cancer recurrence!) in Scar Tissue. I meant to publish this last September during the 25th anniversary of the release of Nirvana’s “Nevermind”, but the #BreastCancerRealityCheck event (hopefully the first annual) took my attention. So, instead I celebrate the 25th anniversary of that seminal album going to Number 1 on the charts, and it actually might make more sense.

For those unfamiliar with this blog and my details, here is the Cliff Notes version: I had my first ever mammogram at age 38 in the summer of 2010 because my 48 year old maternal aunt had just been diagnosed with stage 3 breast cancer, and her mother had been diagnosed, but not treated, as she was dying of heart disease several years before. Whether all that family history was not communicated to the person reading my mammogram, or WAS communicated and ignored, I guess I’ll never know. At any rate, he dismissed the large area of white present only in the image of my left breast as “density”, though I did not find that out until later–this was before all the legislation about informing women about their densities. I was sent a letter saying there was no evidence of cancer; 5 weeks later my left nipple inverted. Much scrambling to various doctors and all those different scans (ultrasound, MRI, PET, CAT) later, I was diagnosed with Stage 3 (spread to lymph nodes), E/P negative, HER2 positive cancer. This was on October 25, 2010, just a few days before I turned 39. Chemo, surgery, radiation and a year’s worth of Herceptin, I was finished January 2012. In 2014 I had to switch insurance, causing me to switch to a different oncologist, different hospital system, different place to get imaging. I’d had 3 or 4 MRIs during diagnosis and treatment, and this one went a little differently.

When I went to this new imaging place in 2014, I was armed with discs of all my many mammograms and MRIs, and I told them directly about that first missed diagnosis. I’m upfront about my lack of trust these days. So that might be why the doctor looking at my mammogram called me back to view the images, to tell me he wanted more images in the form of an MRI. I remember sliding down the wall when he told me this, like some damn over-emoting actress in a TV movie. At that moment I understood why those cheesy movies always included that scene; I suddenly knew the feeling of my legs just failing to work.

The week that followed while I waited for the day of my MRI I do not really remember. I just curled in a ball most of the time. The day of the MRI arrived and as I entered the room, before they put me in that machine, the tech asked me if I would like to hear any music while the test took place. I was stunned. You see, I often heard others, my aunt included, talk about having some atmospheric type music played while having MRIs–you know, the calming stuff I imagined to be similar to stuff that plays during a massage

So when she asked if I wanted music, I laughed mirthlessly and requested Nirvana, expecting the answer to be “no we only have…” and a list of some boring, supposedly calming Enya-style shit. But instead, she said, “yeah I think I have Nevermind”. And so I listened to that landmark record during one of the worst hours of my life.

 Let me back up and explain a few things.  I was a teen in the 80s, and loving the not-ready-for-radio stuff while living in a rural area was tough. There was no college rock station within range. All I had was MTV’S “120 Minutes” and a local rock radio station playing “alternative” (before that was a thing) from 10PM to Midnight on Wednesdays. So when Nirvana changed the music landscape in September 1991 and the grunge/alt-rock gold rush began, better stuff was suddenly on the radio. Why does that matter? At the risk of sounding like a grandpa bitching about the 5 mile walk to school in the snow uphill both ways, there was no Internet and downloading or streaming music back then–no social media to hear about new bands. Adding injury to insult, I was broke, working my way through my 3rd year of college in the fall of ‘91, I had a crappy car with a busted tape deck, so radio was all I had. When Nirvana pulled down that wall, music I liked was finally on my radio and my drives to class and work were less awful. Finally, the music I liked was accessible! Lots of people howled when the underground went mainstream–certain bands weren’t the cool little secret anymore. I get it, I myself still cringe and mutter “sell out” when I hear old songs I love in TV commercials, for a second, then I don’t mind it.

After I was ensconced in the MRI machine, the tech shuffled around, telling me her son had left her a bunch of his old CDs. I could not help but wonder–and I wonder still–about the odds of this happening, and how much slimmer the odds would’ve been if Nirvana had not become multi-platinum, radio-friendly unit shifters. Nirvana’s “Nevermind” was THE CD to own back in the day. How old was the tech’s son? Was he one of those kids that got Michael Jackson’s record for Christmas and exchanged it for “Nevermind”, thus dethroning that 80s superstar—as the old joke went back then? And then what happened–like me, he left his physical CDs behind due for our current download or streaming lifestyle? And whatever possessed his mother to bring “Nevermind”–a record which is a pretty far throw from some kind of Enya crap meant to soothe the nerves of cancer patients–to an imaging facility?

That day in March of 2014, it had already been announced Nirvana would be inducted to the Rock and Roll Hall of Fame–something I was pleased about–vindicated again that these scruffy small-town weirdos had knocked away the canned pop and hair metal bands. Spring 2014 saw lots of articles about Nirvana, lots of stomach-churning pieces about the 20th anniversary of Cobain’s suicide in the media. Meanwhile, my small world was shattering because I did NOT want to face cancer again–whether it was a metastasis or not. I wept silently while keeping still–NEVER move during an MRI–out of a stupid self-pity, and maybe a little for dead rock stars, which is equally stupid. I remember not crying when Cobain killed himself, I considered myself too old for that. Typical rock star story, I thought then. I’m a little less rigid now, and allow myself the tears. I still think it a typical rock icon story, and ultimately have little patience for Cobain or even Layne Staley of Alice in Chains. Great musicians, but I cannot forgive them their choices no matter how much I admire their talent. Yeah yeah, drug addiction is an illness, as is depression. I have that ever-present worry that most cancer patients share—the one in which we know it can come back even 15 years later—which causes me to always have that little fear inside that I may never reach 60, or even 50 years old. It may seem immature, but my desire to live and never have cancer again keeps me angry at rock musicians who throw their lives away. Having empathy and understanding of the nature of their diseases is even more difficult for me now, when I am supposed to be older and wiser. Hey, as I’m fond of noting, I seemed to only learn UNacceptable cancer lessons, and my favorite is my new view that patience is overrated. So I will not apologize for my impatience on this issue.

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source:bandlogos.wordpress.com

In his 2014 book “Here We Are Now: The Lasting Impact of Kurt Cobain”, Charles Cross says, “The question of any performer’s impact is ultimately a personal one. If you were touched or moved in any way by Kurt Cobain, whatever drew you in is the key to what that legacy means to you now.” I read this book not long after that MRI. But is it really whatever drew me in back then still representative of the legacy for me now? Not so sure. Back in the early 90s, I had no way of knowing that I’d reach for those seminal Nirvana songs again in my middle age because I got cancer. And for sure, the songs still resonate with me, but mean something quite different. Certainly not what Cobain meant by them, and again, I don’t care.

So no, the legacy of Nirvana changed for me a bit, although I get what Cross meant in his book. There are things I hang onto in the darkest moments, like re-watching a certain movie or re-reading a favorite book when nothing else is doing the trick to distract me from the fear of my situation. These things are like comfort food, or a security blanket. It had not occurred to me during my 15 months of treatment to rely on favorite albums. Maybe I didn’t want to make an unpleasant association, like what happened with certain foods I ate during treatment. Luckily, that 2014 MRI was clear, I was and am still NED (no evidence of disease), so no awful association of cancer=Nirvana songs was created.

But I still think about listening to “Nevermind” during that MRI. Didn’t even get through the whole album (which is great, usually MRIs take for-fucking-ever). This hasn’t lessened my enjoyment of the record, and I’m still able to recall my 90s self more than my 2014 self when listening. (We love the music of our younger days because it calls to mind…our younger days, duh!) But the record is just a little different for me now. A odd dimension I cannot quite define has been added. Is it joy, because I should associate listening to the album during a test that ultimately brought me good news? Not exactly–the ever-present worry is still there (sure, I dodged the bullet that time, but what about the next oncologist visit/mammogram, and the next, and the one after that….).

I think I’m OK with “Nevermind” functioning as a security blanket against my cancer fears. It’s just something I never imagined happening. But it is no longer the record of my 20-something, what’s-with-all-those-angry-Gen Xers era, no, not anymore. I’ll always be aware of the music/pop culture significance of the record, but it turned into something both darker and lighter for me in 2014.

A Brief Manifesto Change

Most will have noticed I changed the header on this blog page and this blog’s Facebook page to a Carrie Fisher quote. I’m not tired of my Johnny “Rotten” Lydon quote—I likely never waver from his “People like their safe world. They don’t like realizing the way things actually are,” theory. That really applies to my view of the cancer-you-must-be-positive experience. And really, isn’t it just a punk version of Nietzsche’s “sometimes people don’t want to hear the truth because they don’t want their illusions destroyed”?

Fisher’s observation, “I think I do overshare. It’s my way of trying to understand myself. … It creates community when you talk about private things,” is really what my blog is about anyway. I’ve often worried that I lack conviction in my blog posts—it seems I’m usually raising questions without answers, rather than ranting or making pronouncements anymore. Most of my entries seem to be me trying to figure things out. Sure, when I began, I was all about loudly criticizing the Pink rah-rah attitudes—and I still hate that crap. But nowadays I want to look deeper, really dive into how this stupid cancer culture exists and possibly how it can be changed—maybe by trying to understand it. For example, it is no longer enough for me to loudly proclaim how unfair or ridiculous the competition between diseases and cancers is—I wish to understand it, and point a finger at myself for sometimes participating is such a useless and petty practice.  Or rather than just shouting “down with Pink rah-rah”, I wish to acknowledge—and to figure out how to live with the loathsome sexualization of my disease—all the nonsense which contributed to the creation of medicine that has prolonged my life.

These are my private thoughts—am I building community by my overshare?

On the interwebz, many bemoan 2016—calling it the worst. It isn’t, of course. It just so happens the people in my social circle tend to be like-minded and in my age range, so these celebrities that have died meant much to us. And of course many share my horror at our current political situation on the US. So yeah, 2016 is kind of the worst for some people.

I know it is silly to mourn a celebrity I didn’t know. My next blog post, the one I meant to put out here this week, will touch on that in a deeper way. But I saw a great tweet somewhere along the way pointing out how it is NOT silly to mourn celebs/artists, because they often helped us figure ourselves out.

That sure is true, or at least, some of these people were like a timeline for me. My mom was a big Bowie fan; he was part of the soundtrack of my life before real memories were formed. Carrie Fisher was my childhood. I’ve often written of my stupid “Star Wars” admiration. Seeing that movie in the theater when I was 5 or 6, it was and remains the single biggest life-changing experience—yes, bigger than cancer! Of course now as an adult I understand all the hero’s journey/Joseph Campbell stuff. But back then, I just understood it the way it was meant—all the good vs evil and mythical themes. And of course consumerism, ha ha! I still have my action figures!

When I was kid I ran into The Kmart's toy section to part with my hard earned allowance and cash on a new Star Wars toy. I still go straight to the Star Wars toy section 40 years later--nothing changes, ever! I just don't buy anything. But it's like I can't help myself, I have to go to see the Star Wars toys!
When I was kid I ran into The Kmart’s toy section to part with my hard earned allowance and cash on a new Star Wars toy. I still go straight to the Star Wars toy section 40 years later–nothing changes, ever! I just don’t buy anything. But it’s like I can’t help myself, I have to go to see the Star Wars toys!

Just last week I managed to see “Rogue One”, and then re-watched “The Force Awakens” (only my second time seeing it, and I’m sure I’ve seen the original trilogy hundreds of times, even when they’re on TV, just in the background). I thought to myself how great it was to see a female in the lead or hero role. And especially the diverse cast in “Rogue” (love, love, love Diego Luna for a long time now). Of course I never questioned Leia’s military position in the original films. Sure, she was “rescued” in the first one, but she never seemed like other Disney princess types. Still, Rey and Jyn are much better now. It feels like those people making the films now know that little girls like myself were buying those action figures too. So while the films are not perfect (man have I read some bad reviews of “Rogue”), for me they are simply gratifying. I, as a female, am also part of the “Star Wars” geekdom, and am relevant.

Prince and George Michael of course were my pre-teen years. I didn’t love Michael as much as the Duran Duran guys. And it was because of Wham and Duran that I bought Teen Beat (or whatever) and found The Cure, The Smiths, Depeche Mode. Which, in turn, sent me down the path of punk and what was then called “college rock”—and made me the weirdo I am today. (Well, Prince was always on the weirdo side, even when he was the top selling artist.) In my alterna-girl phase I rejected Duran and Wham, and even Michael Jackson and Prince to a degree. When I became an adult I re-embraced all those things, recognized the artistry, the brilliance.

TL;DR version—yes it is fine to mourn celeb artists because they help us discover ourselves. Writing this made me realize just how much and how deeply shaped I was by these folks. Prince in particular, has cast a pall over the year for me. I wasn’t a huge fan, but I did consider him a bit genius—and I don’t use that term lightly. I truly thought him special and it just seems unbelievable he could die, like ever.

Of course, reality sets in. I don’t call these people heroes or idols—I don’t like that. Idolizing someone dehumanizes the person—and they are only human. And I realize how odd it is to cry over celebs when there are so many metastatic cancer patients that deserve to stay alive—and that is where our energies must go—finding ways via advocacy to make that reality.

Still, Fisher’s quote resonated with me deeply. I heard the “Fresh Air” interview when she said it. Likely I was busy working and didn’t take time to jot it down. Just because she died does not make it more true—I just happened to see the quote pulled out, NPR posted it after her death. And it just seemed right to make it my header, to acknowledge that what she said a few weeks ago sums up quite nicely what I’ve been trying to do since I started this blog 4 years ago.

I’ll go back to my snarling, punk rock Rotten quote soon. But now seems like a good time to recognize I’ve been following General Leia Organa’s example all along.