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.

 

Harm

“What’s the harm?” “First, do no harm.” “Do what you will, so long as it harms none”. I realize the surrounding connotations of these phrases–that these phrases, well, the last 2, are discussed in long essays (like about how oncologists have to cause some harm to treat cancer, for example). I don’t take it lightly, but I don’t want to get into it either. All I want to discuss here is the surface idea of the phrases–the notion that we are “free” to do whatever we please, so long as we don’t harm others. My thought lately is, some things do more harm than is recognized. So much for our “freedom” to do whatever we want, the notion that we are all entitled to our opinions and the murky area of sharing (foisting them on?) others.

During and right after treatment, when I was in my white-hot-angry-at-perky-cancer-culture era, I kicked against the expectations of cancer patient behavior/views. When I started blogging, I found others who said we are all free to “do” cancer as we want. Well, I could get on board with that! But these days I see that idea as, well…an ideal that is not often realized. Continue reading “Harm”

SELL!

I am re-posting what I wrote a year and a day ago. Why? Because the issues are boiling up again. (The relentless repetition in CancerLand Culture deserves a post of its own some day, I’m beginning to view relentless repetition as a weapon.) In my view, and I think others share this view, medical establishments are misleading the public with their ads focusing on patients fighting cancer, and winning. Rather than leading a change in the discourse, a change focusing on science and facts, some large “name”, as well as some small-town no-name, facilities have chosen to perpetuate the dominant, persistent, same story-different day narrative of cancer as this opportunity for personal growth, so patients can rise to the challenge and beat cancer–along with a little help from staggeringly expensive treatments provided by the facility in question, naturally.

Some would say it’s just as bad when a fundraising organization does this, since they are often a resource for medical facts for the newly diagnosed. I don’t completely agree, but I still think the images they sell with the narrative are repugnant. But it certainly is not new, it keeps popping up, as I say in this old post. Lots of folks were upset with the Stage 4 martial arts patient in the Komen ad last year; I just thought it was BUSINESS as usual.

I don’t know what the answer is-yes there needs to be funding for research and so far the selling of positive, upbeat, winner patients (and boobies–don’t forget ta-tas and immaturity as a selling tool) has worked. To me there is no use in denying this, in fact, it needs to be recognized and discussed. I am simultaneously repulsed and grateful (see Burden of Gratitude). Cancer patients are commodities. Some others in the community likely think: “So what? As long as the money pours in to do research so maybe I can survive, who cares?” And maybe they have a point. But it comes at a cost (again, see Burden of Gratitude).

No I don’t have a better idea–that is not my field of expertise, so it is not very fair to expect a solution from me. I’m just complaining as usual. Wondering what you all think of all this. All I know is, there is something very unsettling, very creepy about it all. And certainly a whiff of dishonestly, of deception.

Anyway, am I a Cancer Patient or Blender? What are you?

A Strange Evolution

Sigh I am so tired of the endless Dumb Shit Said To Cancer Patients (DSSTCP) articles–yet here I am writing on the topic myself. Again.

My views and feelings on many topics in CancerLand have evolved slowly over the years since I began this blog. Most changes have been subtle I think, so subtle that maybe only I know the tiny differences. But I think my evolution on the topic of DSSTCP is noticeable.

When I first began interacting a bit on the interwebs with other breast cancer patients, I thought it was great that so many were writing “don’t say that, say this” types of books and pieces. I especially enjoyed the blog posts listing snappy comebacks some cancer patients thought up. You know, stuff like, if someone advised a patient to view cancer as a gift, patients would say “I want to return it/get a refund”, things of that ilk. I even went so far as to develop a list of DSSTCP with potential snappy comebacks, hoping to build a resource of those as a page on this blog. But I think I met some patients who were writing a book similar to that, so I abandoned it (like so many posts I start).

Lately, there seems to be a glut of what not to say, say this instead type of posts on my FB feed. Now, while some of the DSSTCP still greatly piss me off, I am at a point where I don’t really feel like reacting much if I hear any. I’m just not at the white hot angry stage I was when I first completed treatment. I’m no longer stuck in outrage mode. But for some dumb reason, I still clicked on some of these recent posts.

And I think I’ve had an epiphany of sorts. Continue reading “A Strange Evolution”

Not Full Circle Yet

Maybe there is a backlash to the backlash in cancer culture. I’ve mentioned it a few times in assorted posts on this blog, how those of us criticizing all things Pink and rah rah are finally being “heard”, at least in CancerLand, and I think there is a push back or defensiveness resulting from this. (See here)

I am not a breast cancer historian; if I were not so busy/lazy, I’d re-read the sections in Gayle Sulik’s “Pink Ribbon Blues” chronicling the rise of the Ribbon and the adoption of warrior, I’m-a-survivor-kicking-cancer-ass slogans, to understand when they began to permeate our culture. Was it the early 90s, maybe? I have no idea when the criticism of this culture began—I only became aware of it when I moved to CancerLand. One of the first things I managed to read was Barbara Ehrenreich’s “Welcome to Cancerland” essay as it appeared in “Harper’s Magazine”. Re-reading it today as I write this, I’m reminded the roots of the women’s health/breast cancer awareness campaigns had a gritty, less pretty start. There were demands about the environment, demands to be included in medical decision-making. Somehow and somewhere along the way it go co-opted. Yes, by Komen primarily, but other groups, and more importantly, millions of patients, went along with it. And then our society became all about fight/win/be positive when it came to illnesses and many other issues.

So when did the backlash begin? Well, Ehrenreich’s essay appeared in the November 2001 issue, so at least as early as 2001 breast cancer patients were uneasy with the “tyranny of positivity”. I’m sure there are earlier examples—but the fact that I don’t know about them, that I only learned about others expressing how I felt when I went looking for them, is kind of my point! The pink/rah rah/think positive to beat cancer was, during my time in treatment, and is still today, THE dominant cancer experience narrative. Continue reading “Not Full Circle Yet”

But Not Too Real, OK?

I was trying to avoid all effort of any kind last weekend. I wanted to just sit on my butt and do nothing—well, maybe read or watch TV. I chose the latter, and landed on a “Brady Bunch” re-run.

I do not remember the episode from childhood, although I’m sure I saw it back then. In it, Mrs. Brady attempts to write a magazine article about her life with 6 kids, the blending of 2 households, all that jazz. Her submission is turned down by the head of the magazine for not being positive or uplifting. So she rewrites and sanitizes her piece, makes the kids seem like angels and their lives ideal. Of course the fairy tale version gets accepted, and an appointment with a group of magazine staff at her home is made to photograph her, do a little background on her family. Naturally everything goes wrong—miscommunicated time leads to her answering the door in hair rollers, the kids are arguing, one of them has poison oak—you get the idea. Normal life with kids (I guess). Mrs. Brady is mortified of course, but the magazine staff is delighted, and wonders aloud to her why she did not write THIS—real life with troubles and disappointments—challenges of a modern household. She does, it gets published: happy sitcom ending at last.

Despite my aim to not do ANYTHING as I vegged out in front of the tube last Sunday, I could not help but contemplate the meaning of “real life” in Brady Bunch Land, and compare it to our current cancer culture. Now, given that it is the weekend again as I write this, and it is the holiday season and I’m just exhausted, my thoughts aren’t going real deep or anything—more of a passing ponder. I’m sure some social/pop culture critic/anthropologist can take a better crack at this.

Things like poison oak, screaming and arguing kids, answering the door less than camera-ready are not disasters compared to cancer. (I know, I know, I HATE the comparison thing, and I know that just because someone’s struggle is minor compared to others I should not diminish said struggle—but indulge me here, OK?) In fact, as someone who once answered the front door wearing pajamas at 3:47 PM one December afternoon (hey I was ready for bed!)—I found Mrs. Brady’s hair-in-rollers-yet-makeup-perfect-and-cute-lounge-robe-at-the-door laughable.

This weekend, catching up on blog reading, I came across a gentle criticism of pictures used on social media when another metster dies—always an old photo from the time the deceased was still relatively healthy, or at least not in the final days of wasting away. The blogger prefers the VERY few times patients have posted those less than photogenic pictures of what those last days really look like.

I think about this blogger’s words. I think about Facebook constantly removing pictures of breasts in the process of reconstruction. I think about how bald heads are now considered “real”—think about that fracas in October 2014 when a morning TV program did not want to feature a Stage IV patient because she was not bald like a “real” cancer patient. Even society’s version of real is kind of fake! We have this language of “grit”—the warrior/soldier with a bald head—but otherwise looking hale and hearty—wearing boas and heels, or tastefully/professionally photographed mastectomy photos, the new breastless nude that is maybe just as fetishized as the bald beatific smiling warrior (see Random Thoughts On Baring the Scars for my worries on that subject). I think about that scene in the final “The Hunger Games” book, when Katniss is “too scarred/ugly” for the propaganda video to be filmed—no, they make her pretty then artfully use make-up to create new, less scary, more visually appealing and inspiring scars. (Just read a fascinating essay reminding me the books were inspired by our current reality TV shows, and all the implications of that.)

A fake real is what we want. Don’t make it too real. Or hopefully your reality is just Brady Bunch cute.

The debate about how much to “show”, about deathbed selfie culture/oversharing will rage on. I recently read a piece that took a jab at the country star and how the blog/pictures chronicling her final days are boosting record sales. A paragraph about Jolie’s publicized surgeries and how her essays allowed her to control her image while appearing to share “realness” for reasons of awareness-raising struck a chord for me. She was real—but only in a managed “I woke up like this” way, maybe? Is it annoying when celebrities do it because they might gain fame and success, but in cases of regular patients who are really trying to tell it like it is, it’s OK? I admit, I was reminded of the Keller’s attacks on Lisa Adams when I read the piece. Not the same, but the underlying sentiment made me wonder if the writer was even aware of that fracas a few Januarys ago. (And the near universal praise for the “real” surgery dancer, see here.)

What is real and when is it too much? I don’t share pictures of myself very much because I dislike the way I look. But I’ve not held back (too much) on exposing my ugly thoughts. Are they too real? Do you recoil?

I’m not sure many people are ready for REAL reality, despite the popularity of reality shows.

“I fake it so real I am beyond fake”

“Doll Parts” by Hole, Courtney Love knows a few things about real/fake I wager!!!

TV Invaded My Escape Plan

My secret to getting away from Pinktober madness is music, of course. The Rock and Roll Hall of Fame nominations come out each October and I’m usually able to use those as a nice distraction. This year, there is the added bonus of the “Foo Fighters Sonic Highways” documentary series on HBO. I thank my lucky stars for Dave Grohl.

The series (and creator) was featured on Sunday’s “60 Minutes”, a show I generally do not watch. While waiting for the Grohl-interviewed-by-Cooper segment, I endured a piece about genetically manipulating embryos, in order to have a baby that does not have any faulty, disease-causing genes.

I’m not going to go into the “playing god” aspect, I’ll leave that to internet comments: “if your mother had done that, you would not have been born” arguments that rage around this topic. Not having ever desired kids, I’m a bit dim on this subject. But the woman featured in the segment decided to take this path after getting breast cancer at age 29, and yes she has the BRCA mutation. Of course that gene is one she sought to eradicate. The interviewer asked her if her goal was, “breast cancer ends with me” and the woman said “yes”.

Look, I understand that BRCA is a big issue in breast cancer discussions. But it is possible to get breast cancer without being BRCA positive—I’m one such patient. In fact, from my rather weak grasp of breast cancer science, it is my understanding that BRCA is not present in most breast cancer patients. So how can this woman be so certain that she has eliminated the chances of her progeny ever getting breast cancer? Not sure breast cancer has ended with her for her descendants.

Perhaps I am wrong to be annoyed, to think that this is irresponsible journalism? Generally, I do not watch these types of magazine TV shows. While I gather that something like “60 Minutes” is a bit more reputable than the morning entertainment & lies shows, I still do not think they are a reliable source of medical info. Sadly, most of the public think things like “60 Minutes” are perfectly reliable. Did the show spread more misinformation (I am vaguely aware there was a false reporting or something scandal with them earlier this year)?

I am so tired of these sort of “winning the fight against breast cancer, kicked cancer’s ass” type of statements: breast cancer ends with me. Do we really have as much control as we’d like to think?

Argh—I just wanted to watch something about one of my favorite bands, about a cool project that has kept me entertained, educated, and distracted this Pink season. Can I not get one moment’s respite from breast cancer bullshit?

Please Tell Me That No Bra Day Thing Is NOT Happening Again This Year

Wrote this about it last year. Still feel the same.

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

Posted on October 13, 2013 by Cancer Curmudgeon

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

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