Category: Uncategorized

Symbols Are Stagnant Institutions, Not Solutions, Nancy G. Brinker

Nancy Brinker is “seeing red” over the recent New York Times article detailing how some breast cancer patients are tired of the “pinkification” of disease (see her letter here, see what she is angry about here). Her letter was strange to me, and would be laughable except 1) as the head of Komen her voice will be heard (although she claims she is NOT responding as a Komen representative) and 2) so many people will agree with her, will not look at her defensive whining with a critical and analytical eye.

I find soooooo many problems with her letter—and I’m not even as staunchly anti-Komen as so many other bloggers!! But here are my gripes.

Well, Nancy, you say the Pink Ribbon now symbolizes breast cancer. You’re not wrong there.

You go on to say breast cancer is very personal for you. It is personal for me too, since, you know, I actually was diagnosed with it myself at age 38. It continues to be personal for me as I know I could have a recurrence at any time. It is personal for thousands of other patients currently living with metastatic breast cancer. What makes you think you have a monopoly on personal feelings about breast cancer? Your claim of it being personal just illustrates your tone deafness, your inability to realize the cancer demographic is made up of lots of individuals with VERY different perspectives. We are not homogenous, and no one’s personal relationship with breast cancer is more important than another’s, not even yours.

You say you made a promise to your sister to work to find a cure, to raise awareness for the need for testing, treatment, research, cures, and to raise money for research. Let’s unpack these promises, shall we?

Your first promise, to find a cure, has not been fulfilled. The second promise, to raise awareness, you’ve been successful—congratulations. But that awareness has not translated to meaningful results—see broken promise #1. Instead, you continue to work on “awareness” as if no one is aware, as if you only wish to do what you know, rather than face new challenges. This has made you, your organization, and other pink organizations, stagnant institutions. The stagnation is killing people. Rather than evolving, than checking off the “raised awareness” task from your list, you continue to only do what has been done for 20+ years. That’s why my avatar is the anarchy symbol over “A” (not YOUR, copyrighted) pink ribbon. We need a little anarchy—or at least an overhaul.

random find

And oh my goodness, the third promise you state in your letter. You’ve raised billions, but has it gone to research? No. More money goes to education, screening (and screening is ALWAYS controversial), and of course to fundraising (it takes money to raise money) than to research (see here, page 7).

You list the (non)-achievements of the Pink Ribbon as allowing Komen to stage races with over a million racers, establishing partnerships in numerous countries, and engaging thousands of volunteers. I am NOT impressed by any of that. Big deal, people ran in races—there are plenty of marathons out there. The partnerships—good grief, look no further than the recent fracking/drill bit fiasco for the worth of those partnerships (but if anyone wants to look further, well, there’s the KFC chicken, the Dietz & Watson—because cured meats are so good for you, and all the shopping, shopping, shopping). And you provided opportunities for volunteers to do what they do: volunteer. Hey volunteers are gold. But their work needs to be meaningful. It seems all the work has achieved is perpetuating your stagnant institution.

You close with “Pink Ribbons matter”. I hope that was NOT a reference to the “#(whatever)livesmatter” campaigns. Komen has already proven time and again their inability to come up with original ideas. See your own admission about “borrowing” the red ribbon idea from the AIDS movement. How about the elephant stolen from METAvivor last year in that stupid Kohl’s campaign?

Originality is part of evolution.

Yes, lives matter, mine too. Most of the non-achievements did not benefit me. Early detection and screening? Nope—I tried that, but the mammogram (or rather the radiologist) did not find my cancer. Sure, the awareness raised by pink ribbons funded research that created drugs like Herceptin, which allows me to still be here writing this critique. However, unless I’m mistaken, the money raised for Herceptin research came from Avon—but never mind, let the ribbon’s ubiquity claim that prize. But all the races, pink ribbons, and volunteers did not prevent me from getting cancer in the first place. Ribbons won’t prevent my likelihood of recurrence and metastasis.

Right now, Pink Ribbons don’t matter. Even non-breast cancer patients are tired of them, have become immune, sometimes blind to them. (That was one of the points of the piece to which you object–how did you miss that?) Pink Ribbons are stagnant and Pinktober has become an institution, celebrated right along with Halloween. They symbolize breast cancer, but the threats to me and others remain. The death rate has not really changed. (Sure, there are more survivors, but the controversy surrounding the screening debates can tell anyone that it’s easy to create more survivors, if you create more patients that maybe never should’ve been called patients. But I digress). That symbol is no solution for my breast cancer, for my friends’ cancers.

Here is my challenge to you Brinker—realize how ridiculous Komen has become and do something about it. I think Komen is incapable of evolution. Prove me wrong.

X-Rays and Candy

Yesterday I was doing something uncharacteristically indulgent—getting my hair colored, trimmed, and styled, when I overheard another client and stylist discussing the dangers of trick or treating, you know, the old razors in apples thing. They spoke of that myth as the gospel truth, as the reason they were taking their kids to some trunk and treat thing (I did not know what that was—had to look it up!).

I am always surprised at how those myths persist—heck, they began in the pre-internet age—which really says something about how people latch onto things, and don’t let go. I remember the razors in apples thing growing up, I remember local hospitals offering to x-ray candy every year. Does that still happen?

I was chomping at the bit to intrude on their conversation, but, alas, I was in the hair drying/styling portion of my salon day—so I only caught bits of the ongoing conversation, and there was no way I was going to yell over the sound of hot hair aimed at my head loudly at high speed. It’s funny, earlier this year, I wrote about struggling with the notion of jumping onto every little lapse when I hear cancer myths—worried I will become that tiresome “cancer woman” among people I know (probably already am to some degree). But when Halloween BS gets tossed around, whew, I was VERY ready to rain knowledge and truth on uninformed heads!

Forced into zipping my lips, I got contemplative about how myths persist. I mean, I know the jokes about not believing everything you see on the internet—of course you cannot! But on the other hand, not believing everything you read and hear (rumors?) is a long, grand tradition, isn’t it? (Uh-oh, having a childhood flashback to the rumor about the Mikey kid eating pop rocks and soda—anyone remember that?) And combating rumors with truth happens on the internet too, in addition to the creation of BS. So, how is it that so many people still buy into the urban legends about razors and apples? That has been debunked, I thought!

I wish I knew how to end these illusions, because that talent would sure come in handy in CancerLand.

We hang onto falsehoods, slogans, any number of ideas out of….what? Tradition? Habit? Pick any breast cancer sound bite: 1 in 8 (when that stat is bit more nuanced when looking at age brackets), early detection saves lives, sugar feeds cancer, a positive outlook helps kick cancer ass, run for cures—oh, why go on. I’ve been struggling with a few myths I hang onto myself—but at least I am questioning everything.

Maybe that is the key—the willingness to question anything one hears or reads. An open mind.

October is wrapping up and I find myself in a foul mood tonight. Watching nonsense online, people hanging onto untruths, just being unwilling to hear any challenges to what is perceived as facts, I’m just bummed out. Between Halloween myths and breast cancer BS, I’m just drowning in mass delusions.

I’ve been blogging and reading blogs for nearly 3 years, and I’ve been in CancerLand for nearly five, and I keep thinking: Still?! Still, with this rah rah pink crap, no progression?! How can that be? We have to keep fighting nonsense every year?

But the answer to that question was right in front of me yesterday, listening to 2 people talk about a lie, a decades old myth, like it was real.

Supporting The Show?

Weariness and fatigue will make me do anything, I suppose. Last October I voiced frustrations I had with a few words and phrases, like “awareness”, “show support/support breast cancer”, and every single slang word in existence for breasts (Some Word Problems). In that post I mentioned that part of the reason I disliked “show support” was because it always seemed like some people were more about the “show” portion of that phrase, rather than the “support” part. The post was about being tired of hearing those words and phrases to the point that they had lost meaning for me, so I did not want to delve into what really bugs me about “showing support”. Plus, I was afraid my thoughts were too harsh to be shared.

If I’m harsh, so what?

This time of year, the ads and pleas to go bald (whether for real or wearing a shower cap thingie) or do some Pink thing to show support for “sisters” with breast cancer overload my senses via many forms of media. I understand that many people succumb to these ads and buy a silly trinket, wear a t-shirt, or put a sticker on a car, with good intentions, with good hearts. They think by being public with their caring about their friend/relative with breast cancer will please that person. And maybe it does please some patients. But not me.

I wrote about my frustration with all the head-shaving-in-solidarity a couple of years ago. I still think it is rather useless compared to acts like cooking for a patient, or simply listening to a patient’s many fears. I remember around the time I wrote that post there was a small kerfuffle about some young girl getting sent home from her school for shaving her head to show support for her bald friend with cancer (it violated some dress code). So much outrage in social media about it—so much praise for the bravery of the head-shaver; the girl with cancer wasn’t mentioned much. While I think it is great kids show empathy, I could not help but think that scenarios like that teach future adults at a young age that the “show” is the most important aspect. Yes, I am a cynic—read other posts on this blog!

Now, before anyone starts howling at me; YES I know there is no one way to do cancer and I have no right to criticize those embracing Pink while expecting respect for rejecting Pink (not going down THAT road today, but see Reciprocity and Respect). And YES, as stated above, I know that many people wish to show support with the best of intentions, thinking it is the right thing to do, as it is so socially acceptable and all.

But why is it socially acceptable—why is there this ongoing trend of advertising oh so publicly: “I CARE, I HELPED”? And no, this is not an issue limited to cancer.

I actually began noticing this well before I got cancer. Working in the non-profit sector and managing volunteers, I saw how frequently volunteers expected a little “prize” for their contributed time and efforts. I especially noticed the same volunteers wanting the same t-shirt emblazoned with the word “volunteer”, year after year. I knew they must have a couple from previous years; wearing those would’ve helped my budget—because while the shirts were cheap, they were not free. (Contrary to popular belief, businesses are not tripping over themselves to donate to the many, many non-profits in existence, all with outstretched hands: “please give”.) But I thought back then, cruelly perhaps, that some people really liked showing off: “look I helped!”

And yes I point the finger at myself too. Many years ago I would participate in a walk for a local animal shelter, and there were the usual t-shirts and other “prizes” for money collected. I wore my t-shirt proudly—“look, I raised money, I’m a good person!” But as years wore on and I had less disposable income, I began to resent when national animal organizations would send t-shirts and notepads to entice me back into giving donations. It was money wasted; I don’t have the money, and the dollars buying “prizes” should’ve been used for sheltered animal care. But perhaps the t-shirts were donated and I should not complain (and they may have gotten a discount for mailing that stuff out, but it was not free, in my limited experience, the USPS does not do freebies).

You can kind of get the picture as to how I got cynical about showing “I helped”, right?

This cynical view has been confirmed many times over now that I reside in CancerLand. I especially noticed it a couple of summers ago when some centerfold models jumped out of airplanes topless—you know, setting boobies really free—for awareness. When criticized, one of the models/participants protested back and the usual “you should be grateful we’re doing this for you” finger-wagging, and the “my (insert relative here) had breast cancer and she has/had no problem with this type of thing”, comments left everywhere ensued. I noticed it again more recently this past summer, with the soda bottle incident. The reactions by the porn organization that instigated the stunt to the outcry directed at them were almost laughable. It’s so clear at times like these that applause for all this “support” being showcased is expected. How is that NOT about self-display?

I was relieved last year to learn I was not the only person who looks at all the instances of setting ta-tas free (with a selfie to document the act), or just plain old wearing of slogan-saturated apparel, with some cynicism. I ran across an interview (transcript) about all the “Boston Strong” t-shirts that were the item to wear on the anniversary of the deadly marathon incident. Here was the part that caught my ear:

SMITH: Dobens says getting the shirt is as important to people as giving the donation.

DOBENS: It has this idea of, like, I have proof now that I helped. I can show people that I really, really care about the people that I’m helping.

JOSEPH BURGO: It’s hard not to get cynical about this stuff.

SMITH: Psychologist and author Joseph Burgo says he understands the underlying feelings of solidarity and defiance. But he can’t help but cringe at people feeling that their every sentiment has to be tweeted or posted or literally, worn on their sleeve.

BURGO: I mean, why wear anything? You know, I think that there’s a kind of a feeling that unless you share your experience with other people – like, it isn’t entirely real to you unless you announce it to other people. It’s just part of this narcissistic culture of ours, where everything is about self-display.

SMITH: It’s almost as if people are using the Boston Strong brand to brand themselves, which raises a whole other concern; that Boston Strong is not actually a brand, and isn’t trademarked. So anyone can sell it whether or not any money goes to charity
That last bit about where does the money go—that wouldn’t sound familiar now, would it? Yes, being sarcastic.

Of course, I must consider the power of The Show. Seeing a sea of people wearing pink t-shirts is a strong visual statement: “wow, lots of people have to deal with breast cancer, we better do something about it, because it must be a huge problem”. And then public perception and pressure follow and that is how charities start raising money, and politicians start granting funds for research. I’m sure politicians want to “show” they are doing something (don’t get me started there). Seeing a sea of pink reminds women of how common the cancer is—better get that mammogram! (Otherwise known as “awareness”). I see the big picture, and understand the power of the movement.

But I still cannot help but wonder if something got lost along the way.

Many other bloggers and journalists have written extensively about how buying that feel-good pink-drenched item really doesn’t result in much money going where it can be useful. It’s pointless for me to repeat information that is easy to find, especially since most readers of this blog already know what I’m talking about.

And truly, I’m not trying to hit out at everyone—cancer patients or not—who wears Pink slogans or slaps them on cars. In fact, I’ve been wondering if now “self-display” will be lobbed at those of us who’ve posted pictures of our scars in a retaliation of sorts to crap like no bra day. I see more and more mainstream articles featuring women baring scars with or without non-cosmetic tattoos. While personally I hope to provide solace for those facing the same surgery, and to combat the “sexy” campaigns, I’m sure some would say it is “showing off”. I’m still on the fence about this, and beginning to contemplate removing my pictures for the “show off” aspect, as well as a few other reasons (see Random Thoughts On Baring the Scars).

Do I have the solution for this? Of course not—I never do. I am merely pointing out that for me it was easy to become cynical about “The Showing of Support”. I seriously doubt I will ever think head-shaving in solidarity is useful, especially compared to activities like cooking or cleaning for a patient—you know, regular, grunt work that doesn’t make for a good photo-op. Personally I did not have to endure any incidents of having someone do something personally more of a “show” when I would’ve required more of that someone, but I’m sure others do have such stories (feel free to share those incidents in comments). And while I cringe when I see the sea of pink and all it represents to me (see Take the Mythical Image of the Strong Warrior Breast Cancer Survivor And Bury HER Once & For All), I understand the power of that image.

I wonder if society will ever get to a point when we can stop supporting the show.

Why I Am Not a Politician Or In Charge Of Anything

Let me share an anecdote about my problem solving skills, or lack thereof.

As I’ve stated often, I live in a beach resort area. That means in the summer the population swells, and the rural roads get congested with tourists, making traffic similar to the big cities they’re trying to escape. An errand that would normally take 20 minutes can take hours. In the winter, the roads are mostly unoccupied. Those of us who are “locals”, whether born and raised like myself—“from heres”, and those who’ve relocated/retired—“come heres”, bitch about traffic A LOT. We are a spoiled folk. We like and appreciate tourist dollars, but we so highly value the “quiet, country life” too.

One weekend mid-August I was driving down that beach highway (locals know to stay in their homes on weekends, but I was in an unavoidable situation), and got stuck at an intersection. Of course, a major case of gridlock was in progress. People constantly choose to go forward without giving any thought to the idea that they might not get beyond the intersection when the light turns red.

I had a grim thought that perhaps the best way to stop people from making this choice was to have spikes pop out of the road and puncture their tires as soon as the light turns red. Then maybe people would be less inclined to cross an intersection when their car would clearly still be in the way if the light should go red! Of course I dismissed the idea realizing that if these tires got damaged the cars would be even more stuck, and I’d never get where I wanted to go. A week later I was reading a letter to the editor of a local “newspaper” (scare quotes intentional), suggesting a solution of signage threatening heavy fines at this intersection. Puh-leez! If drivers are ignoring the red light, they’ll just ignore the signs! I sneered as I read the letter aloud to my mom, and then told her my idea of the spikes popping up, in spite of the logistical problems of deflating tires, which I was already mentally trying to resolve.

My mother gasped, rightfully so. I mean, why on earth would I think it OK to punish drivers’ choices with destruction of their personal property? THAT should’ve been the first hurdle to my proposed solution—not those silly logistics.

In my weak defense, I was bitching about all of this to some other locals weary of summer traffic not long after that, and they laughed. The even chimed in with their own fantasy solutions—like wishing for a paint gun or other contraption stuck on their car front to fire away at drivers, or bulldoze them over. I swear, we are not malicious, just tired!

The point in revealing my absurd driver fantasies is to illustrate how my mind goes to the extreme. And you guessed it, when it comes to the relentless display of pink ribbons and such, especially in October, my mind goes to destruction—and that is NOT good!

Those first few Octobers after diagnosis, as I’ve said here before, were just white hot anger about Pink–this was before I found other like-minded bloggers. I wanted to either rip off or spray paint over every single Pink ribbon or save the tat-tas sticker I saw on cars in parking lots. NOT a great idea. I rolled my eyes every time I saw someone wearing some Pink-y clothing item, especially the ones with rah-rah, I-kicked-cancer’s-ass-style slogans. One October, I cut a bunch of BCA’s Think Before You Pink business card-sized fact sheets and surreptitiously taped them to pink ribbon stickered items in the grocery store, in hopes it would make buyers stop and think. Passive-aggressive much, Cancer Curmudgeon?

These days I still grit my teeth when seeing this one jeep parked at a store I frequent (I assume its owner works there), all decked out with pink windshield wipers, a couple of ribbon stickers, and some slogan on the spare tire cover. I grip my steering wheel tight when I see stickers on cars while I zip around town (see 365). And luckily I don’t go out to too many places (too tired after work), but on a rare occasion, I end up out in public with people. As I noted on Facebook the other day I ran into so many Pink-attired women (see Uniform), I had to exert some self-control to keep from confronting and yelling and generally causing a scene.

These are the times I remind myself that there is no one right way to do cancer, and just because the way I’ve chosen is not often respected (again, see Uniform, and a good deal of other posts on this blog) does not mean I get to disrespect those who embrace Pink.

I was never a patient person and after cancer my patience all but disappeared. I think patience is overrated anyway, I mean hey, isn’t “life is short” one of those silly “lessons” cancer is supposed to teach? If so, why should I patiently wait for anything? Why should I be patient with the continued narrative of early detection, be positive, and all that crap that I found damaging–especially if that crap continues to harm current and future breast cancer patients?

But I’m a rash person, prone to flipping out and wanting to rip up stickers, deface property. There are better ways; I’m just not the person to think of them I guess.

I’ll behave, I swear.

Disconnected. Slog. Resentful.

This October I feel more disconnected than ever from the Pink noise. And yet, I feel more burning resentment than ever, too.

Before I got online this morning and saw all the posts about submitting 3 words to GMA for some Pink crap they are doing, I was already thinking about how the words and phrases about to fill all media are so damn meaningless (just like I thought this last year: Some Word Problems). I saw silly grocery bag (pictured below) with the ribbon and the words “inspire hope”, and all I could think was, “what does that even mean?” I snapped this picture while I was waiting in the checkout line, and naturally my gaze fell onto the People magazine with Jackie Collins on the cover—barf (I am sorry she died, but completely disagree with her views and am so jaded about ALL celebrity cancer stories that I just always want to barf when I hear of them).

What do these words mean? What have they to do with my every day slog?
What do these words mean? What have they to do with my every day slog?

I am so tired of all the slogans surrounding cancer, and even all illnesses. They are so disconnected with the everyday slog that is the very nuts and bolts of treatment. This is why I’ve been especially touchy this year about the showy symbolic activities, such as wearing a bald cap, for “support”. How does this bald cap, or taking off a bra, and then maybe hanging it on a mailbox, do anything for that every day, minute to minute, nitty gritty, SHIT that is treatment?

I don’t write often about my primary client; I take care not only of her pets (since, technically I am a pet sitter), but also I am a secondary caregiver (her husband is the primary) for her Chronic Lyme treatment. First of all, hers is not my story to tell exactly, and secondly, there is so much controversy surrounding Lyme and I am unwilling to wade into it. Chronic Lyme patients will read this and know the everyday slog of which I speak: the IV treatment regime, the schedules, the horrific side effects. Cancer patients will know some of it, and can take an educated guess about the rest.

This is only the tip of the iceberg in describing my daily life. I won’t go into the scary dark places: the reminders of my own experience as the receiver of caregiving, the horribleness of side effects. Just know that the past few months have been especially difficult. I’ve been super busy and often so tired when I finally sit down to my laptop that I can barely read the many posts by my favorite bloggers (my saved links on Facebook and bookmarked web pages to read later “when I have a minute” are now out of control).

When I see “inspiring” slogans on t-shirts and what-not, and smiling crowds in races or on idiot morning TV shows, with those little clips detailing the same old story, I just think—is this the real life? No, it is not.

Patients face disease and treatment alone, ultimately. Yes, good people do lend real support—not the fake, symbolic kind exhibited by head shaving, but real stuff like listening, holding, cooking, cleaning, etc. But no one can experience the nausea, the constipation, the diarrhea, the exhaustion, the FEAR, and so on, for the patient. And people holding up signs in a video clip don’t help me when I have a relapse of cancer panic, or when I nervously, fearfully, watch my client to make sure she stays awake long enough to not choke on her food.

THAT is my everyday slog. How can I help but feel resentment when I see all this we-are-fam-i-ly sign-holding, waving, smiling, on TV? I did not go into warrior mode and kick cancer’s ass while I was in treatment. I slogged it out taking each day as it came. I do the same now. Lyme’s ass is not being kicked; we’re just taking one day at a time, slogging it out, doing the best we can and working toward better days. Cheering crowds make me feel so disconnected with the realities of illness and treatment.

That is what illness, cancer and Lyme, are to me: a SLOG. And the celebrations about to ramp up for Pinktober make me feel DISCONNECTED and RESENTFUL.

And those are my 3 words—but they won’t be the last words I speak.

A Quick Page Turn

Went to the oncologist yesterday and have been demoted from a twice a year patient to a once a year patient! Yay!!!

No I don’t buy into the mythical 5 year thing. I know that my cancer can recur, or metastasize even 10 years from now. This whole episode is a bit of a unicorn.

But hey, cutting doctor visits in half is good enough for me right now. It always seems like the days available for my oncology visit were hard to coordinate given my pet sitter lifestyle. Too many hoops to jump through. So I welcome having one less day I have to find, strategize, coordinate about. I just want to do my thing every day based on my own schedule.

Ha! My own schedule….what a fool! I am a pet sitter, and completely live in service to our Cat and Dog overlords! When I returned to my clients’ home last night, the cat had been outside all day. I had not been there to let her in one door to let her out another door 2 minutes later. She was so angry, meowing so loud I could hear it through the closed door.

So I thought yesterday would be a sign I was slowly getting my life back from cancer. Maybe—but I was never in charge of my own life anyway I guess. What a fool I am!! All hail the Cat and Dog Overlords who rule my every waking moment!

Kitchen Table

I sit at the kitchen table today that is the same table at which I sat when I got the call telling me I had breast cancer.

I love this client that I am sitting for this weekend. The two dogs I am babysitting now are not the ones that gave me comfort during some of the worst days of my life. Both of those dogs are sadly dead; and new, young, brash dogs are in their place—keeping me on my toes this weekend!! But I miss the Labradoodle; whose constant digging of deep holes on the beach that awful week kept me busy filling them back up, so people would not trip. It was a good distraction.

I suppose I am bound to be a bit introspective this autumn, given that I approach my 5 year mark—whatever the hell that means. To me it does not mean much, but I am sure my oncologist, and some acquaintances, will look at this as some great milestone. I’m beyond another hurdle, and maybe my chances of recurrence and/or metastasis are lower now. I’d like to believe that, but all the articles I read now, citing cases of recurrence more than a decade after original diagnosis, make me unsure. I am certainly NOT jubilant or running around saying “cured!” like some fool. I consider myself lucky these days; at least my original oncologist was not a total idiot—he informed me there was such a thing as metastasis—which I knew in the abstract anyway. It seems there are quite a few Stage 4 women out there who were not informed. I shake my head in incredulity at that. Doctors who do not inform these patients should be reprimanded at the VERY least. Incompetent.

This kitchen table is where I sat a little over 2 years after diagnosis, about a month after treatment ended, when I decided to take-this-job-and-shove-it, and subsequently embarked on making my own pet sitting business official, and my primary source of income. I’m not going to get all “cancer taught me life is too short to be miserable” and say cancer was behind the decision. I already knew life was short and I was more than miserable; let’s just say being cancer-fatigued makes that sort of thing easier. You know, the kind of tired beyond caring about anything. It has not been easy, in fact most of 2012 was incredibly difficult—as difficult as my cancer months (Oct 2010-Jan 2012). But I have NOT regretted it.

Psychologically I am not totally healed from either of those incidents; but I am so much better now. Maybe a little better with the cancer stuff, if I am to be totally honest. Thanks to finding like-minded cancer patients online. Thanks to some online friends not in the cancer realm, but whose help was invaluable in so many ways (thanks @angel-of-malahide and @andlifeisgrand). And thanks to some in real life folks, who have mentored me and made me better.

Lots of ink is spilled about “trigger warnings” and coddling of young Americans with such warnings. Are we too fragile to be triggered? I cannot afford such fragility. I need these gigs for my income, so I take them, even if the client’s kitchen table brings back horrible memories. I’m sure most cancer patients don’t avoid places where they received their news—especially if it were their very own homes! But yes, I am sitting here and remembering. But it is not all bad. It just is a timeline that I reflect upon as I approach a milestone. I hate the saying it is what it is because it is soooo overused. BUT, hey, it is what it is. I got cancer, I quit a job, and here I am, for better or worse.

I admit this kitchen table has brought up some unpleasantness, some introspection when I’d rather be looking at cat videos (or all those other internet things that distract me and make me “waste” my time—but if I’m laughing my butt off, is it really waste?). I knew it was coming. I see my “new” oncologist (well, I’ve seen him a few times since early 2014, he is just new because he was not my doc during treatment) in a few weeks. As it will soon be 5 years, we can talk about just yearly visits; not these twice a year treks. I’m all for that! I HATE all doctor visits—even my poor old optometrist, who is really not so bad.

Good. Bring on the once a year. I am more than ready to get over this next milestone. Here is to hoping that new disasters (recurrence/metastasis) do not await me.

Cancer – until you’ve had it, you don’t get it.

Source: Cancer – until you’ve had it, you don’t get it.

Re-blogging this wonderful piece by blogger buddy Alan–a piece he wrote resulting from some chatting he and I have done.

I am grateful he found the Pink Ribbons film–a film I don’t often remember to tell anyone about, in my wrong assumption everyone has seen it. I’ve written several times about how patients with other cancers must view the Pink hoopla, and how breast cancer patients like myself who gripe about Pink might be perceived as biting the hand that feeds. So, I am grateful when anyone learns that Pink just ain’t all it is cracked up to be.

End of Summer Re-Post

Yes, I’m re-posting again. I’ve been a bit busy to write, and well, this piece is still quite relevant, in more ways than one.

I get very tired of comparisons and metaphors in CancerLand, but at the same time, I understand people need the metaphors. It helps them to hear “this is like that”. And this is the essence of this post: this is like that.

Labor Day

Posted on September 6, 2013 by

Like I said in the previous post, it is nearly impossible to explain Labor Day in a beach resort town to those who’ve not experienced it. It is a complete and sudden absence of people, attention, and activity. (See previous post for background on life at the beach.)

eastcoast

I thought maybe post-treatment cancer patients would like to know they have a little insight about how life in a resort beach town on Labor Day feels: it is that “my treatment just ended” feeling. I can certainly say to non-cancer patients who live in my town, “you know that Labor Day feeling?” when I want to describe how it feels when cancer treatment ends.

Driving around the beach highway at 4PM on Labor Day is a strange experience. Everyone is gone. The hub-bub that made traffic unbearable a few weeks ago is non-existent. I love fall and Halloween, but am always a little bummed to see summer go, and this sudden exodus just makes it so real. Labor Day just always makes me a little sad.

Oddly enough, the hub-bub returns a couple of weeks later—not full swing and full-on noisy mind you. But there are those folks that come to the beach in September because there are no kids, less people, less activity. But folks always seem to think it will be quieter the more weeks out from summer it gets. Not so. If one wants a super quiet vacation while the beach is still warm, start it on Labor Day. Sure the service at stores and eateries might be slow, due to a small staff of a few shell-shocked souls who are serving customers and wondering what the hell just happened (the answer is: August, the worst month to work at the beach, just happened).

Cancer patients, does this sound familiar? The treatment experience is very much like the beach in the summer. Super intense, something going on just non-stop, until…it just stops. Finishing the last treatment is like a good-bye: “you did great, good luck, see ya in six months!” It is just a full on system shock, when your every single day was wrapped up in going to a medical facility, and then suddenly it is over. I re-experienced that on this Labor Day…everyone was gone, and I was still on that beach highway.

But it’s good to not have to deal with treatments every day, and it is good to have less traffic. I know the tourists and cars will return in full force next summer. I just don’t want cancer and the whirlwind of dealing with treatment to ever come back.

What Is The Real Battle Here?

For all the battle language that I still loathe in cancer, I can’t help but employ it when it comes to this. How can we “fight” the presentation of breast cancer as sexy fun times (the latest being the Komen dogs, but I mean the Coppafeel crap and the ill-advised Young Survivor bracelet thing too)? Is it worth a “war”? I used to think it was worth starting up a “battle”; I’m a bit less sure these days. But here is a post, or a suggestion (?) I had two years ago. Mostly, it is me trying to explain why sexualized cancer hurts. But these days I despair of making anyone understand. But for what it is worth–another re-run:

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

Posted on October 13, 2013 by

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

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