Turned Up To 11, Always

Marty DiBergi (Rob Reiner): Why don’t you just make ten louder and make ten be the top number and make that a little louder?

Nigel Tufnel (Christopher Guest): These go to eleven.

From “This Is Spinal Tap”

This is just another hissy fit post, similar to Did You?, but sillier. Well, sort of. I’m also serious, but don’t take myself too seriously.

In Did You?, I listed some questions people ask a cancer patient to find out if there was something the patient did or didn’t do that caused the cancer. That post is me complaining about the way folks love to blame the patient, so they can assure themselves that by doing the opposite actions, they will be safe.

But what is troublesome is that some of the items I listed that might cause cancer are pleasurable. For example, drinking, smoking, getting a tan, are indulged in for fun by some. And I’ll admit I find great pleasure in sweet foods, like chocolate and cheesecake.

My point is, with all the “advice” tossed off in the media and from well-meaning, but-won’t-shut-up-with-the-advice types, I sometimes twist it in my head into: never have any fun—it causes cancer or other damage. I get overwhelmed sometimes and grumble to myself, great, I think I’ll just ingest a leaf of lettuce and a gallon of water each day—nothing else, and maybe that will keep me safe. Except it won’t, because the lettuce was probably treated with some chemical and can I even trust where water comes from? Well, I suppose if I pay an arm and a leg for it.

I could extend the list of killer/fun behaviors, and extend the list of negative consequences to health problems beyond cancer. Nearly all the cancer-causing items cause heart or other disease. And I’m causing myself all kinds of harm by constantly being attached to some electronic, internet connected device. Hell, even my mobile has started to berate me.

I attach a speaker to my mobile via the headphone jack, and as I turn up the volume, a message appears about prolonged high volumes and headphones causing hearing loss (“you dumbass,” I wanna scream at the phone, “other things get hooked into the headphone jack, not just things that go directly into my ear!!”).

But the truth is, I already have quite a bit of hearing loss and it is my fault. As those who’ve read other posts on this blog o’ mine will know, I write a bit about music, and my tastes run to the loud and aggressive—lots of screechy guitars. I love punk, grunge, hard rock, hip hop, all kinds of ear-splitting stuff. I’ve loved that sort of music for over half my life and don’t foresee a change.

I’ve been going to concerts to see the bands that make this music for about 20 years now. Well, I haven’t gone much in the past ten years. But I did see quite a few bands, in small places, where loud music reverberated off the walls. And no, I did not wear anything to protect my ears, as many musicians and concert attendees do these days. So, that is how I’ve caused hearing loss. That, and turning it up loud in the car, windows up, singing along, and I’m told my music can be heard as I pull up in driveways. For me there are few pleasures better than the music being turned up so loud I can feel it in my bones.

I have difficulty on telephones when people do not speak clearly or speak too quickly. And why do so many people insist on talking to me when I am far away, walking away, or running water or doing some other noise-producing activity? I cannot hear any of it!

So, all this said, it would be reasonable for me to have learned a lesson, to turn it down a bit.

No.

I’m so tired of doing the “right” things. I am so tired of an extreme healthy culture that I feel like I cannot have any fun doing “bad” things. Yeah yeah yeah, exercise is fun, and I’m sure there are many healthy activities for me to find—please, don’t send me suggestions. Because nothing can replace as good as loud feels for me.

I have, of course, reduced some of my indulgences—I drink much less, eat better, exercise more, since cancer. I still get annoyed when I see health or money saving advice start with: quit smoking and give up soda (carbonated beverages, whatever they are called in whatever region). I never smoked and hate soda, and beer for that matter. So I cannot get a quick obvious start to getting healthier or saving money. And as much as I say I love cheesecake, I love veggies just as much, and have always eaten quite a lot of them, so the veggies are already added to the diet—they were always there. Just not at the same time as the cheesecake, ha ha.

I’m going to keep turning my music up as loud as I want. I will go to my grave—whether it is cancer that sends me there or something else—deaf as post and I will not care. Please don’t take this one last bit of bad fun from me. I need it to keep the fear cancer has introduced into my life at bay.

“Something else is hurting you – that’s why you need pot or whiskey, or screaming music turned so fucking loud you can’t think.” — Charles Bukowski

Get There Faster!

TV Re-Runs: Part II – “Friends”

A/N: This is the sequel to the previous post and was supposed to appear a couple days ago. But…I got a nasty head cold in between and am still a little out of it. So, that is why it seems late.

Tired of Pink pushers acting out the SNL “Mr. Short-Term Memory” sketch, I change the channel to another TV re-run: the ever popular, always-on show, mammography. What real TV show seems to always be on some channel? “Friends”! Not that there’s anything wrong with that. Yes, I’m referring to another popular syndicated sitcom. I’m happy both are often on, I like them very much. I cannot say the same for the constant mammogram debate always in re-runs.

I always have a difficult time when the mammography and over-diagnosis debate rears its ugly head. I was under-diagnosed. I received a false negative for my very first mammogram at age 38, which I requested because my 48 year old aunt had just been diagnosed. About five weeks later I was falling down the cancer rabbit hole with a 5×6.6 cm tumor. I’m left distrustful and bitter on the subject. I find it difficult to think about.

So when mammography gets discussed on a wide scale as it has been recently, I lose my temper quickly. The same old nuggets pop out: it is not a 100% accurate method of screening, it results in over-diagnosis and over-treatment, it makes no difference in mortality, blah, blah, blah. Then the articles written about a report pick it apart with paragraphs of numbers and what they mean, to show why the report is to be believed…or not. And so readers have to be wary and recognize that all that is written comes with biases, and as one article implied, some minds will never be changed.

My emotions make me just register white noise, so the science and evidence is difficult for me. It all sounds the same, and I think, wasn’t this just discussed? One recent article I started to read kind of had the same been there, heard that attitude, pointing out this controversy rises every few years. I was thinking it more frequent—like just last summer? But I think that controversy was removing the word carcinoma, reclassifying screening results—those things that may or may not turn into cancer. There is a real problem with over-diagnosis, I get that. I also get that last summer’s fuss was more about semantics and classification. But, mammography (and other screening methods, for other cancers as well) is still to blame in the matter, because that is how the may-or-may-not-be cancer results are discovered. So in my mind it is just part of the same old mammography story.

This is when I change the TV channel from SNL re-run to a re-run of the sitcom “Friends”. Remember loveable, cute, not-so-smart Joey Tribianni? He was always a few steps behind Chandler, Ross, Rachel, Monica, and Phoebe. Everyone else would “get” a joke or a point, and have to wait for poor old Joey to catch up. Late in the series’ run, there is a great episode in which Chandler and Joey are in the apartment belonging to Monica’s ex, Richard (sadly Tom Selleck is not in this episode). They find tapes, presumably sex tapes, labeled with female names. They find one labeled Monica. Chandler is instantly mortified, but Joey, well, he takes a bit longer to connect the dots. After waiting a beat, Chandler finally yells what viewers had thought for years: “get there faster!”

“Get there faster” is what I want to scream at researchers and reporters regarding this. Or maybe I wanna yell “get there faster” to everyone because I know the people involved in the endless studies done on effectiveness of mammography have nothing to do with other aspects of cancer—like why it happens, what to do about it, how to make not happen at all. As for those mammograms that find things that never turn into cancer? I guess the people crunching the numbers aren’t involved with solving that problem. I’m left thinking no one is even trying to find that solution. I’m sure it is being researched, it’s just the way that tidbit is mentioned as just one or two lines every time I hear this story, I’m starting to wonder why it isn’t THE story. I’ve read of a similar issue in testing for thyroid cancer. Seems to me determining if something is or is not cancer before treating is certainly a “get there faster” kind of problem.

I know how unfair I’m being with my frustration. I know demanding a solution RIGHT NOW is pointless.

Discoveries and breakthroughs don’t just happen on demand, or just because enough money is thrown at the process. I guess I’m just tired of this particular story grabbing headlines every few months or years…I really cannot tell how frequent it is anymore because I’m just so tired of it. Just like some TV re-runs.

I know other work is being done, in fact I recently saw interesting pieces about treating/preventing recurrence in the area of HER2+, very relevant to me. But that was certainly not broadcast in the mainstream media, as was the case with this mammogram study. Mammography always grabs headlines because it is the only thing the general, non-cancer public knows. Guess that is what happens when something is oversold.

And I know researchers work hard, and cannot think about the individual cancer patients, or potential patients, as they execute tests, analyze data, and all that.

But here’s the thing: I am one of those individual patients and as much as I try to see the big picture, some days I can’t. Some days I can only view everything through the lens of my own experience. So here is my view.

It’s true mammography did not work for this patient, diagnosed under the age of 40. It’s true I’m bitter about that. It’s true that this bitterness is a tiny part of my resentment toward the Pink message (but there are soooo many more things wrong with Pink, just dig around this blog). It is true I am NOT on the “a mammogram saved my life” bandwagon. Rather, I tend to snort each time I get a letter of “no cancer present” after my bi-annual scans: “yeah, heard THAT before.” So there is my bias.

But when the number crunchers start talking about how screening just finds disease earlier and does not change how long a person lives, the person is just sick for a longer portion of life, it is hard to hear. Even though it totally makes sense, it just seems such a hopeless statement to me. I don’t know why.

It is hard to hear these reports without a suggestion for a better method to replace mammograms. I know there are other screening methods debated in health media, but are they affordable and covered by insurance, available to even poor women, myself included? Regarding those options, if they are effective that is, I say get there faster.

While the two incidents have nothing to do with each other, it is difficult to put up with yet another onslaught of Pink rah-rah, this time in the form of the Kohl’s & Komen campaign, right after the latest repeat of another mammograms-aren’t-all-that story. Both just remind me that everything still seems to be in the same stagnate place as it has been for years. I had cancer, there is no news telling me of a reduced chance I’ll get it again. All will remain as it was before. I wonder if there even will be any changes in my lifetime. I don’t want to have cancer again. I don’t want to keep having the same Pink conversation over and over. Everything is just too slow. I want to change the channel from the cable networks that just show re-runs in syndication. I want the current season, but it does not exist.

All these years and it all sounds the same. GET THERE FASTER.

Short-Term Memory

TV Re-Runs: Part I – “SNL’s Mr. Short-Term Memory”

I’ve got cancer controversy fatigue.

It is only the beginning of March and already 2014 has had too many breast cancer controversies. The bizarre Keller attacks provided an interesting silver lining in that so many people defended the right of cancer patients to tell whatever blunt truth each deems appropriate to their experience, not just the media approved story, without getting hassled for it. I’d hoped the infuriating Pancreatic Cancer Action PSA controversy would provide another silver lining in the form of a general realization that 1) Pink has deceptively sold breast cancer as a desirable disease 2) patients with other cancers are so tired of the attention given to breast cancer that push back has begun. I still think push back will continue, see here and here, but the jury is still out on that one.

Are the voices challenging Pink Rule getting louder? Maybe, but it is business as usual according to the dominant voices in the breast cancer conversation. The most recent two controversies (is it just 2, did I miss something? I’ve been a little otherwise engaged lately)—the here-we-go-again-arguing-about-the-usefulness-of-mammography fuss, and is-it-October-again-already return of Pink commercialization—are just old and tiresome. They seem like TV re-runs. Or, more accurately, remind me I watch too many TV re-runs.

I’ll get to that mammography thing later, some other post maybe. Right now I just want to rant about the latest Pink hi-jinks.

Remember the iconic recurring sketch on Tom Hanks-hosted Saturday Night Live episodes, back in the late 80s-early 90s, “Mr. Short-Term Memory”? The little song at the start of the sketch said something like: he got hit on the head by a fruit, he shouldn’t have sat under that tree, he’s Mr. Short-Term Memory, he’ll drive you crazy when you talk to him but he’ll never know it, because he cannot remember anything. Hanks as the titular character would repeatedly forget why he was on the game show or why he was in the hospital, right in the middle of a conversation. The other characters had to repeatedly explain the situation to him, resulting in everyone having the same conversation about 5 times, to the exasperation and irritation of the other characters. Meanwhile, Hanks cluelessly acted like each time he heard the repeated story, it was brand new information! I loved that sketch, I still do. The sketch is funny, which is good since SNL is a comedy show.

Komen, Kohl’s, and any other Pink sellers acting like breast cancer is some kind of undiscussed elephant in the room reminds me of Hanks in those old Mr. Short-Term Memory sketches, but it ain’t funny. I picture all the marketing flunkies at both Komen and Kohl’s as Hanks/ Mr. Short-Term Memory, shouting “all these women are getting breast cancer?! Oh my gosh, we need to let people know about this!” It’s as if Komen is inexplicably ignorant of its own history and efforts. This is mind-boggling , until I consider the alternative. Maybe the flunkies think we, the shopping public, are plagued with short-term memory, and we forgot that barrage that just happened a few months ago. Impossible! Pink ribboned items hang around in my local stores up until at least the holidays, or after!

What the hell is talked about so much that folks with other cancers applaud that recent pancreatic cancer PSA, because they are so sick of pink ribbons being waved in faces (yes, that is an actual comment, scroll down to Martin, here)? As recently as a few months ago I was complaining about how so many folks—in real life, in comments sections, on social media—like to point out that 30 years ago breast cancer was only whispered about, and now…isn’t it great? Komen and other Pinked out groups have made it so we can talk openly about it! As if this is some kind of triumph! As if being able to talk openly about it was the end goal all along. Sometimes when people claim that all the talk of breast cancer shows how effective Pink has been, I have to shove my hands in my jeans pockets so I don’t grab their shoulders and shake them and scream: “don’t you get it?! I don’t want to TALK about breast cancer—I want to makes sure it doesn’t come back in me—I want to have never had it at all!”

But I did get breast cancer, and I’m stuck repeating myself (I’ve noticed I keep re-posting old posts lately, geez, I guess I’m not just watching re-runs on TV, I’m putting out my own re-runs!). I feel stuck listening to the same conversation over and over, because the biggest Pink gorillas cannot seem to move forward. Komen & Kohl’s awful Pink website page filled with conversations starters are just the same old warmed over topics that’ve been discussed to death. No mention of Stage IV, the misguided idea that cancer is beatable with no mention that it is so likely to recur (as Stage IV, again ignoring that reality, duh), and of course, other pretty pink-i-tudes, like the notion cancer is a gift, something desirable (gee, no wonder those silly pancreatic cancer patients got confused—YES I’M BEING SARCASTIC). There is even the chance to win $50 from Kohl’s by sharing a personal breast cancer story. Even this idea is old news—it is just another version of the “only the positive stories get to the podium” phenomena so ever present in cancer tales. (Because a Cancer Curmudgeon-y story is unlikely to get a podium or prize.)This really burns me up, but I have to submerge that anger for some other day.

Using these proffered conversation starters that have already been discussed into the ground will just make the conversation about breast cancer look as silly as Mr. Short-Term Memory’s rants. Coming so soon after the pancreatic cancer PSA fuss, a marketing campaign that encourages folks to talk about breast cancer like such a conversation has never happened before is beyond tone deaf. I realize that this campaign is the result of too much time and money to simply cancel it after the pancreatic cancer PSA, but if Komen and Pink pushers had been paying attention to the growing grumbles in social media and even the mainstream (I guess that Orenstein article was just TL;DR for those involved with this campaign), maybe they’d have thought twice before developing this travesty.

So many have already eloquently spoken about the Komen & Kohl’s theft of elephant concept from METAvivor there is nothing to add. I was outraged at first, but now I step back and find I’m not even all that surprised. Pink pushers are so unable to move forward in the conversation regarding breast cancer, of course they are out of new ideas. Realizing this, I think to myself, is it any wonder they had to steal? Last I checked, METAvivor is still disappointed that K&K are Unwilling to Do the Right Thing. Too many resources stand to be wasted pursing legal action, but given Komen’s litigious history, perhaps “lawsuit” is the only language they speak?

I’m not suggesting that all the #talkpink turn into #STFU. It’s just that breast cancer is still such a huge problem that has not decreased in proportion with nearly 30 years of “talk”. Nothing has improved in terms of death, of mets patients. Doesn’t that seem like a conversational shift is needed? I’m not as specifically anti-Komen as some folks. Rather, I tend to get so incensed by nearly all Pink/rah-rah entities, or hell, ribbon and disease-of-the-month culture as a whole, that I sometimes cannot discern the individual pieces of the puzzle. Then my knee-jerk reaction is: “it all sucks!” But Komen really is The Worst this time round.

I think Kohl’s reached their goal—sorry, I cannot linger on that site enough to even understand how the shopping/donation process works, I was just too grossed out. I have not shopped there in years—as a pet/house sitter, I simply do not require their goods. So it was easy for me to boycott, and because it was so easy, I feel strange or hypocritical suggesting others boycott. I’d like to NEVER buy anything with a ribbon on it but it is damn near impossible in the case of some foods I like. I wonder if the backlash directed at K&K is enough to alter the next big Pink selling bonanza surely in the works? How many serious missteps like this will it take to end Komen? Part of me wishes someone would take them aside and clue them in, and that they’ll listen—simply because it is so hard to watch Komen embarrass themselves even though I cannot stand them. But the imp in me says, “hey, give ‘em enough rope….”

I wish I knew a solution to the over-abundance of Pink and all that comes with it. I only know I can no longer watch all these Pink re-enactments of the “Mr. Short-Term Memory” sketch.

Did You?

Did you smoke, and for how long?

Did you drink, how much, how often?

Did you have kids?

Did you use a tanning bed?

Did you even try to lose weight?

Did you take hormones or the Pill?

Did you eat enough blueberries?

Did you eat tomatoes?

Did you eat meat?

Did you buy organic?

Did you eat a lot of sugar?

Because if you have cancer, you did it to yourself.

Several days ago, Dr. Otis Brawley of the American Cancer Society wrote on some news site that most cancers are preventable and made bullet points of the usual laundry list of prevention measures. He did not say that everyone, or me personally, Curmudgeon Q. Cancer Patient, had brought cancer upon themselves/myself. But I still feel a zing when I read or hear this sort of thing. I am still trying to figure out why I get that zing.

Now, I know should avoid comments sections on mainstream news media sites. They cause me much stress—another cause of cancer, naturally. So why read them? Well, it does give a glimpse into how and what people think. Of course one person whose husband died from cancer protested the idea her husband brought it on himself, and another responded along the lines of: all these damn cancer patients are too sensitive, this article isn’t blaming them.

Ah there is the rub. Why are we sensitive? Well, because we get asked those questions I just listed at the start of this post, and more. A lot. Or at least I did. And yes, I brought some of the paranoia on myself, every time I looked at a magazine cover while waiting in line at the grocery store, each one touting some food I hate (fruits, including those cursed tomatoes) as a sure fire way to prevent cancer—and it usually says “prevent”, not “lower your risk”, at least on the cover, the story changes a bit on the pages inside.

Yes, I know, breast cancer patients are not blamed for their situation as much as lung cancer patients or people with heart disease. I just read another article about the latest mammography mess in which the journalist pondered how women think of heart disease as a result of bad behavior, while breast cancer is considered something bad that happens to women. I really have a hard time with this particular misperception that I see in articles more frequently than I’d like. Because from where I’m standing, when I got asked those questions, there was a flicker of a suggestion that this cancer did not just “happen”, but rather, I’d engaged in actions or non-actions that resulted in my getting cancer. I think that could be called blame.

I constantly see pieces linking smoking, and especially alcohol, to breast cancer. Yes I see it more than average folks because, you know, I had breast cancer, so I hone in on these items. But I am sure a few others are seeing it, and it is getting lodged at least in the subconscious. Well, OK, maybe not, given that most local breast cancer fundraisers in my small town are sponsored by bars and other businesses selling alcohol, and yes, alcohol is generally served, never mind all the chatter about alcohol causing breast cancer. Ugh, that is a post for another day.

It’s just that, for anyone to think most people, even on subconscious, unspoken levels, are not blaming the cancer patients, any cancer patients, for getting themselves into their fixes, it’s just…naïve. We must be blamed, we must endure those insulting “did you do this, did you not do that” questions. Some folks MUST blame us, because it is the only way they can assure themselves they’ll be safe from cancer. Anything they do that is different—eating, drinking, having kids—well, that is the get out of cancer free card, isn’t it? If only that were true.

What will it take to end the blame the patient game? Maybe cancer patients are too sensitive, but there is a reason. Too bad sensitivity isn’t transferable to others in need of it.

So, This Is Where Pink Has Taken Us

Don’t you hate that jackass that says “I told you so”? Then hate this jackass Cancer Curmudgeon. Most breast cancer bloggers I follow rightfully point out that the over saturation of Pink is the direct cause of the cancer envy on display in the Pancreatic Cancer Action PSA. But the envy is not new. I hope that this ad will wake up those folks who need to understand that Pink Ribbons have become insufferable. Here is what I said about it a few months ago (this is where “I told you so” comes into it).

What Do You Mean There Are OTHER Kinds of Cancer Besides Breast Cancer?!

Posted on October 31, 2013 by Cancer Curmudgeon

Or: Shoving Pink Down Your Throat

Yes that title is sarcastic.

The topic I have not seen addressed much in breast cancer and Pink discussions is resentment patients with other types of cancer have towards all things Pink. It is possible it is being discussed and I’m not seeing it, however, given I can barely bring myself to read about this topic much lately. I find I’m unable to read even essays criticizing Pink; I cannot read another list of the outrageous products/corporations aligned with Pink, each pointing out a new lowest of the low in the most absurd use of Pink as marketing tool, most preposterous item turned pink. I can see it for myself on the rare occasions I venture into a store, or if I’m accidentally near a TV, or use the internet—which means seeing the ridiculousness is unavoidable.

I confess that in the past year or two I’ve been so swept up in my own resentment toward Pink that while I was vaguely aware that some patients with other kinds of cancer were also sick of Pink, it is only since maybe September I’ve begun to grasp the depth of the resentment, and yes, I think I even saw near-hatred the other night. It pops up on a variety of social media, and many are just expressions of frustration, questions as to why this or that colored ribbon/cancer doesn’t get as much attention, or exasperated reminders to not forget, well, name any cancer associated with whatever month, I’m afraid to try to list for fear of omission. One painful post from a patient with a gynecological cancer proclaimed October to be the time of year in which every day is devoted to telling the world only one kind of cancer matters. The phrase I see quite a bit from patients with other kinds of cancer is “shoved down our throats” in reference to Pink and pink ribbons.

This is what Pink has come to; some perceive it as edging out absolutely every other disease and cause in an obnoxious way, and one’s perception is his or her reality. It is not exactly clear who these patients hold responsible for all this shoving down of the throat. The pieces I’ve seen and read do not seem to differentiate between products with ribbons on them (the kind that claim to send a few pennies to a charity or the ones that just have a pink ribbon with no such claim), pink parade-like races, or people wearing anything from tiny pink ribbon pins to head to toe pink-logoed ensembles. Perhaps it appears all the same to the very frustrated. Well, one delightfully profane post did flat out accuse some folks of slacktivism in matters of pink clothing and accessory choices.

I highly doubt it was the intention to detract attention from other cancers or issues, but it happened, now what’s to be done about it? Why should these patients with other kinds of cancer—being overwhelmed with their own diagnosis, and underwhelmed with support systems or websites catering to information about other kinds of cancer—make the differentiations mentioned above? Is it fair to expect those who bewilderedly ask, “why does Pink get all the attention?” to seek out the answers that have been written about mostly in breast cancer related articles, such as the lucrativeness of Pink and the juvenile enjoyment society gets from talking about boobies? Is it right for a breast cancer patient to complain about Pink and all the so-called wrong kinds of attention it attracts, when all these other cancers get little to no attention, and want the attention and more importantly, the funding for research that goes with a stupid colored ribbon?

While I may be a jackass, my aim here is NOT be so insufferable as to presume to speak for those with other kinds of cancers. Even if I were to now get another type of cancer, I’ve already had breast cancer, so to society, I am inextricably linked to that damn pink ribbon, no matter how much I scream and stomp on it to reject it. And anyway, I am incapable of speaking for anyone else at all; I’m barely able to speak for myself half the time. But I’m still not always able to shut my mouth.

Since diagnosis I’ve been aware that the cancer center at which I was treated bathed the building in pink light each night in October. It annoyed me before, but this year, reading about all of the throat shoving, I think differently. I do not know why the lights are turned pink this month, there are no signs outside the building proclaiming fundraising goals or awareness slogans. It is a small town cancer center—no research or breakthroughs to benefit all breast cancer patients the world over are going to happen there. I’ve inquired about the reason in my comments to the center I made recently. I do not understand the need for breast cancer awareness…at a cancer center, for crying out loud. A building that exists as a place to treat cancer patients is the epitome of all cancer awareness. Thus, a pink light becomes overkill, a pink light becomes the favoring of patients with breast cancer—their lives? their money?—over all other cancer patients, a pink light becomes the shoving of a cause down many gagging throats.

Perhaps I am the only one of thousands of patients treated at that cancer center that has interpreted the pink light this way. Perhaps others do see it that way and just don’t care, or don’t think it worthwhile to say anything and I’m sure I come off as another “selfish” breast cancer patient biting the hand that feeds. But, unless that light is doing something other than just doing the same old “breast cancer awareness” where awareness is needed least, I cannot help but think it is a bit insensitive to patients with other kinds of cancer. I have a hard time believing I’m the only one thinking this, and maybe my complaint combined with others can get attention and make a change. But I’m a Cancer Curmudgeon, a misanthrope, a socially awkward grouch always saying the wrong thing, so I doubt it. I do not like putting much effort into something that doesn’t produce visible results, which is why I’m so frustrated this year that given all the activity by those criticizing Pink, like that Orenstein article, there has been little to no reduction in Pink silliness (at least in my area). I do not feel good about myself for speaking up; I don’t even know right now what drove me to do it. But I don’t really regret it either, even if it was not my place to say anything.

I wish everyone pushing Pink would become less obtuse about the scorn, frustration, and ill-will it now provokes. Awareness is a two way street, maybe it is time to re-assess this old pink ribbon to see if it really is still working. Some folks are oversaturated with it, and others are still clueless about too many aspects of breast cancer. I’ve written about that before (Failure of Awareness), and maybe will again. I see comments saying something like those complaining about Pink cannot deny how effective it is. Effective at what? The stats as to whether breast cancer incidence and related deaths have been reduced, increased (falsely inflated by classification of DCIS), or remained the same have been covered by others, and I’m not qualified to go into that. But the fact remains people still get breast cancer, I still got it, people still die, and while the treatments, especially Herceptin, developed as a result of Pink dollars and awareness (YES, I GET IT, and I AM grateful) keep me alive, for how long? The same problem is still here, just more people know about it and it is acceptable to talk about it. And they know about it and talk about it to the exclusion of every other cancer.

And what will be the fall-out from the undercurrent of Pink resentment from the patients with other cancers? As much as TV medical talking heads like to point out that heart disease and lung cancer impact more people, breast cancer still occurs in a hell of a lot of people, meaning there are too many potential customers willing to buy treatment and Pink crap for Pink to lose any power. And c’mon, how will our culture ever ignore boobies? So the backlash may not get anywhere, but that does not mean this resentment should be ignored.

Want Attention? Just Say Breast Cancer

2/7/14 edit & author’s note: When I write, I assume readers are residents of cancer land and are aware of the latest, um, “dramas”, that are going on in cancer land. But that is unfair, and I’ve been made aware that I should include links to what I am ranting on about. I’m reluctant to do that most of the time because I don’t always want to give something that annoys me more access for more clicks–especially in this situation, because what I’m writing about here is the dubious methods employed for getting attention! But my desire to be clear about what has driven me to write about any topic wins out, so here is a link to the Salon article that made me aware of the Pancreatic Cancer Action PSA, and the PSA itself can be watched there as well. Happy viewing!

What is the best way to push your agenda? Just say breast cancer.

You can push your questionable prevention advice with this fear-mongering because everyone will listen. (I ranted about that a lot last summer, if you enjoy rants: 1, 2, & 3, all about how one report used fear of breast cancer in a title to talk about something else, and yes, I acknowledged even then that I was contributing to the attention.)

You can insist that your disease is more important because it kills more people than breast cancer—I’m looking at you, most heart disease-and-women campaigns. February is almost as annoying as October, since everyone honks about breast cancer to highlight how heart disease kills more women than breast cancer. As if everyone was not already tired of the phrase breast cancer. Because the only way to advocate one cause is to smack another down, apparently.

You can imply all your cancers are worse because of lack of funding and awareness because the Big Pink Ribbon Bully stole all the attention. As I’ve said before, breast cancer is a bully that is now being bullied—payback is a bitch. Everyone is tired of all the attention breast cancer gets, yet no one will shut up about it, myself included.

I’d like to say the best way to handle the pancreatic cancer PSA is to ignore it, because the backlash and buzz is drawing attention—no doubt that is exactly what is desired. It just proves my point: want attention? Just say breast cancer.

But ignoring it is wrong. Of course pancreatic cancer needs attention. And frankly, I have heard or seen people with other cancers comment that they wish they had breast cancer, instead. I don’t presume to know why, but I can guess. So the statement in the ad was no big surprise.

But I’ve also read one blogger’s thankfulness to have a gynecological cancer rather than breast cancer (sorry cannot remember who or where, cannot locate), because of all the silliness and sexualization around breast cancer, knowing she’d loathe the pink ribbon even more if she had breast cancer. She’s glad that at least her cancer is taken seriously. So there’s that too.

This is why I hate all the colored ribbons—it just creates a divided cancer gang land. Gotta be true to your colors. No thanks. People are sick and jealous of the attention breast cancer and Pink hogs (see What Do You Mean There Are OTHER Kinds of Cancer Besides Breast Cancer?!). Understand why Pink is doing more harm than good yet? Understand why Pink-coated-everything has got to stop? Understand why that ribbon does not represent this breast cancer patient?

When I was treated for breast cancer, I was not ushered into a separate room with pink champagne, cupcakes, feather boas, and a party atmosphere. I slogged it out with patients with all kinds of other cancers. Just because so many people think they know all about breast cancer (NO) because they’ve seen a few Pink ads, breast cancer patients still have to get the same (slightly better than past years) slash, poison, and burn treatments many other cancer patients get. What non-breast cancer patients are NOT aware of is the fact that there is a good chance it will come back and kill me—I’ve heard that twice in the past several weeks from two different doctors who are involved in my cancer care. That is Pink’s dirty little secret: breast cancer still makes a person sick, the treatment is still horrible, and it still kills.

Dead is dead, regardless if it is from pancreatic, breast, prostate, or ANY cancer. Can the conversation, the message, the fall-out, from the PSA be an understanding of this simple notion?

No, because I’m sure there will be a segment of people thinking breast cancer patients, with our alleged advantages, should just stop whining, stop stealing pancreatic cancer’s thunder, stop insisting we have it just as bad, because in their eyes, we don’t have it as bad, no matter what we say. Because I know folks with mets breast cancer, or other cancers, have thought me lucky. I’ve thought it myself. I wrestle with it all the time. So should I shut up about this PSA? Is this what breast cancer patients should keep in mind before talking about this PSA?

At any rate, the PSA worked, because it invoked breast cancer. Attention, guaranteed.

Thank you Pancreatic Cancer Action, for reminding this breast cancer patient to not shut up about the horribleness of all and any cancer, equally. Thank you for reminding everyone just how much work there is to do, for highlighting just how badly Pink has failed in conveying the gravity of getting a breast cancer diagnosis, and for showing how un-classy it is to smack another down to lift your own self up.

Does Breast Cancer Owe It to Other Cancers?

Does Breast Cancer Owe It to Other Cancers?.

Not Behind Me, Woven Into Me

“I don’t think anyone ever gets over anything in life; they merely get used to it.” – Douglas Coupland

In my view, cancer is a two-headed monster. There is the actual disease, the medical condition, to be dealt with as best possible, hopefully to ultimately achieve a NED status. Then there is the other head. I don’t know what to call this head, other than the culture of cancer, which angers and repulses me for the most part. For me this includes everything from the warrior metaphors, the fuzzy-wuzzy, airy-fairy “hope-believe” and tyranny of positive thinking that I do not buy into, and the supposed path a cancer patient is to complete: one of getting treated, taking advantage of the personal growth and enrichment opportunity by learning lessons and accepting cancer as a gift (how do those poor saps who do not get the gift of cancer ever grow to be better people—YES I’M BEING SARCASTIC), and then putting cancer behind once treatment is all done. There is probably more I’m just not thinking of right now.

**Side note: I’ve written about much of the above before, and my feelings and opinions have changed little. See list of related posts at the end.

It is that last notion, the one in which “now that I am done with treatment I am supposed to be over cancer” that is chasing its own tail in my head.

From the day I learned I had cancer, the idea that I’d ever be over cancer just did not make sense. How can one get past cancer? The biggest obstacle to that lofty goal is the constant fear, however sharp and present or dull and distant it is, that cancer will come back—it is always there. Not to mention that I will always have to ‘fess up to having had it, when getting new medical care providers or insurance, or who knows what else; I always have to check that box in medical history. Cancer is my history, and history has everything to do with the present. Continue reading “Not Behind Me, Woven Into Me”

Maybe They’ll Listen This Time—Yeah, Right

There are so many issues worthy of discussion raised by the recent Keller mess. And most of the issues are being written about very well, and hopefully meaningful discussion can happen. But what makes me doubt it is that some of the issues are not really all that new to cancer patients. So, I am re-posting something I wrote a few months ago that is directly related to one aspect of this drama, before the drama even happened.

I know other bloggers have also written about this; I’ve seen such posts, I just cannot remember when or where I read them, so I cannot link them. I can only re-post what I wrote.

The main conceit of Emma Keller’s article is that she raises the question of oversharing via social media, seemingly without looking to see if this issue has been raised in cancer social media before. Does she really think cancer patients have not thought about this, written about this before, that she is the first person to consider this? (Eye roll.) How arrogant are these article commenters that tsk tsk cancer patients with their “if you make your illness public, expect controversy” type of criticisms? Very arrogant. I REPEAT: CANCER PATIENTS HAVE ALREADY THOUGHT ABOUT THIS, YOU ARE NOT TELLING US SOMETHING NEW. But of course the general public does not think cancer patients are able to think of any issues on our own—they must still think we do not research our disease and treatment options, given all the unsolicited advice they feel compelled to give. (Read the first paragraph of this re-post, and also see here for more on that.)

One last thing. It has been implied that cancer patients who share personal items so publicly must think we are immune to criticism because of our cancer, like we think our proverbial cancer cards give us a free pass. That would be an interesting thought—IF what the cancer patients were actually saying was being discussed. But given that not only Bill Keller, but MANY people, so totally and utterly got Adams wrong by calling her the standard bearer for warriors when the complete opposite is true, how can this criticism even be true? One cannot be criticized for something that one absolutely did not do!

Real discussion can only happen if listening (or fully reading everything, not “perusing”) is happening. All I see are people wanting to confirm preconceived notions. If some folks would read and listen to how cancer patients are debating the issue of using social media to discuss such personal matters, maybe they could cure some of their ignorance. Being anyone from an allegedly highly professional journalist to a person who thinks they are smart enough to make a comment does not grant immunity from being called out on the unwillingness to shut up, listen, and learn.

Original post link provided in title, to read comments if the reader cares to do so.

If You Don’t Approve of Preventative Mastectomy Don’t Get One

Posted on September 1, 2013 by Cancer Curmudgeon

When I recently came across yet another criticism of “unnecessary preventative mastectomy” I reacted angrily. It was on HuffPo, and the article wasn’t even about the preventative mastectomy or the decision to get one so much as the author describing her husband’s reaction, but of course a commenter started in about “unnecessary mastectomy”, thinking all these BRCA folks with their 90% chance of getting cancer just need a little vitamin D. Puhleeze, so tired of this nonsense—does it not occur to anyone that maybe the author did research, already knows and considered whatever tiny-ass piece of advice someone clearly without experience and knowledge—like that particular commenter—could offer? OK, tiny subsidiary rant over.

I am so tired of people judging others’ medical choices. If you don’t like preventative mastectomy, don’t get one. No one, not even other breast cancer patients, let alone anyone else, has any idea of the millions of little details of another’s situation, medical and otherwise, and therefore are never in a position to criticize the choices of others.

But then I think: by sharing her decision (this blogger had previously written about why she’d had the procedure) and writing about it—and by extension, when any of us who put our stories on the internet—are we inviting this judgment? I’m not suggesting anyone stop sharing, not by a long shot. While I’d like to shout at folks like the commenter, “how are any of our choices impacting you—it’s none of your business,” did we make it public business, by, ya know, sharing our business? She put her story out there and she should not expect only bravos and applause, nor should I, nor should anyone. People judge each other all the time, but do we have a reasonable expectation to have them shut their mouths, not share those judgments, when we publicize our choices?

I’m actually not asking a rhetorical question here.

As I consider this most recent fuss that has come into my line of vision, I revisit what makes me write my story and show my pictures. I put my story and my pic here and the complimentary comments are great—I do feel good when I get that support. And it hurt to be told one time in comments on HuffPo that ugly pictures of breast surgery scars should not be posted on the internet (this was during the Facebook kerfuffle).

I certainly am not providing advice about medical choices by sharing my information (see my About page), nor do I assume anyone else’s information or choices will work for me. The more I haunt the internet, the more I think every single case of breast cancer is totally unlike the next. But I like hearing about other options, about other experiences, and other opinions—it helps me think and process my own experience, my questions. For example, I know most breast cancer patients choose reconstruction. In fact, I’m starting to feel like a freak more and more for just going with a lumpectomy. It seems everyone I read on the blogs had at least a mastectomy, usually double. I wanted to show–hey there are other options and that’s ok—we all don’t have to do the same. So I present my choice, how I got there and what happened with it, as just another experience or example, and maybe someone can benefit from knowing about it.

If I inspire, great, if not, great. I’m sure the folks who complained to Facebook about the SCAR project would just accuse me and my posting of my nippleless breast of being some attention seeking exhibitionist. If people think that, I cannot help it. All I know is, it took a long time for me to find images that matched what happened to me (as I’ve mentioned a few times on my blog, I was clumsy at searching cancer issues on the web for a long while). So the more photos of breast surgery examples there are out there for people to find, and if they can help someone else who is just now going through it, then good. I remember how alone I felt, and I remember the relief I got from seeing images similar to mine, when I finally found them. That is why I do it, it is that simple.

I think back to the woman mentioned above who criticized the influx of breast surgery scar photos on the internet, and her comment to me in which she claimed that if she ever got breast cancer she would deal with it with a positive attitude and not post her pictures on the internet. Funny, I once thought I’d never post pictures of myself either. It is impossible to know what you will do in any situation until you are absolutely faced with it. The blogger inspiring this post was indeed BRCA positive. I got the test planning that if it was positive—not realizing how unlikely that would be—I would just get a double mastectomy and be done with it. It wasn’t, obviously, but even now, I don’t know for certain that if I’d gotten a positive result I would’ve gone through with it. I cannot possibly know that unless it actually happened that way. I literally do not know what I would do in any other situation other than the ones I actually faced. If I cannot even know what I’d do with one little situational change—how can anyone have the temerity to call it an unnecessary mastectomy if they’ve never even been close to such a choice? And even if they were close enough—then they should know how awful the choice is, and why not judging others’ decisions is so important.

Ultimately I think it does not matter if the HuffPo blogger, or me, or anyone, posts our story for anyone to read. If I’d just kept the info quiet, restricted to a few IRL people, I would expect none of those people to tell me if they thought I was right or wrong in my choice—I may have shared my business but it’s still not their call. What does it matter if 15 people, or 1500, or a million people know what I did, no one has the right to question my judgment on medical decisions that impact me alone.

Chats with My Friend Greg

I learned of Ms. Keller’s essay via someone I follow on WordPress. I found Mr. Keller’s via my Tumblr buddy Greg, late Sunday night, while watching the Golden Globes (reading is a great way to tune out the more boring self-congratulatory speeches). Here is a link to Greg’s brief thoughts on a portion of this mess, via my added comments. I post this link because I value and treasure Greg’s thoughts and think them most worthy of reading, as I’ve done in the past. For those unfamiliar with past links I’ve posted, Greg is living with Stage 4 Prostate Cancer.

http://anotheronewiththecancer.tumblr.com/post/73239150634/further-thoughts-on-the-heroic-measures-article

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this: