Looking At Pictures

So my most recent posts have been about the spring runs/walks/arts events to benefit local breast cancer organizations. Last week was the annual Komen on the boardwalk at the beach 10 minutes away from my hometown. The weekly freebie newspapers just came out yesterday and the pictures were all over the covers—bright pink splashes on the front pages.

Usually I avoid those rags of local “news” this time of year and in October because of the breast cancer celebrations coverage. But I did pick a couple up this time. I stared at the picture of the survivors’ parade. Every single woman wore a bright pink t-shirt with a lighter pink ribbon on it, the word survivor under the ribbon. A few women wore pink wigs, and/or pink boas. One woman wore a boa/necklace/garland of paper pink ribbons of various sizes. I realize that if I thought such races/walks were a useful pursuit (I do not), if I called myself survivor (I don’t), if I embraced the Pink (I really, really don’t), I’d be in that survivors’ parade wearing that t-shirt. So why aren’t I?

It is strange how humans behave I guess, what we believe, what social groups we join. I just had a conversation the other day with a client about how people start to take on the beliefs of those they live near and interact with (we were discussing how both our parents were becoming more conservative and saying offensive things—obviously things they’ve heard from other folks they interact with now that they are out of the work force—very ugly stuff). But I wonder what made me reject all that Pink stuff that is the norm in my region. The others in the small support group I attended (for people diagnosed with any cancer under the age of 40) were mostly disdainful of Pink, a few loved it. But all the major breast cancer groups that organize and/or benefit from these events recite the Pink, stay positive script, which is why I avoid them.

I stared at the picture of the women in pink shirts on the cover. I cannot imagine loving any ribbon so much as to wear a garland of them. I looked at pictures further inside the paper—some women in pink pants and hats and…just covered in Pink! Fortunately, no panties and bras pulled on over bike shorts like that other beach event last year. But still.

In the years from diagnosis up until last spring, these pictures filled me with disgust. All I could think about was how Pink and the stay positive pressure had harmed me. (For those who’ve not read my other posts, in short—the Komen dogma of get your mammo for early detection did not work for me, and the be positive at all costs made me miserable until I figured out I’m Allowed to be however I wanted—it’s more complex, this is the Cliff Notes version.)

I’m a bit more detached now. It makes me a little sad I guess—I know my natural social awkwardness, and trait of playing devil’s advocate, or desire to go against the grain are a few of the reasons I do not join the Pink parades. I think it would be easier if I would just go with the flow, if I could. But I can’t.

Always questioning everything can really suck sometimes.

But in an uncharacteristic move from someone calling herself Cancer Curmudgeon, I take a moment to be grateful (no griping—what???). So what if I can’t walk in that Pink parade? I found other bloggers that have many similar opinions and I found solace there. I started—and continue—blogging to keep in contact. For one who does not make friends easily, I began to do just that. I even began to “friend” some on my personal Facebook—waaaay out my comfort zone. Too many bloggers and folks to list for fear of missing someone, which would mortify me if I left anyone out and offended in that way.

Sure the women in the pictures of the parade look like they’re having fun. But I’m having fun too. And I have peace. It may not seem like it when I go on rants or give in to the anxiety—but I do have it. Because I know others feel the same way. At some point a post about this value of what others would call “complaining”—and a ponder on that word—will be written. Right now it’s enough to know I’m not the only one.

“Walked out this morning
Don’t believe what I saw
A hundred billion bottles
Washed up on the shore
Seems I’m not alone at being alone
A hundred billion casatways
Looking for a home”

“Message in a Bottle” by The Police

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Correcting Every Little Language Lapse

My previous post griped about a local annual spring run/walk for breast cancer fundraising. There was another fundraiser going on that weekend I noticed but just couldn’t focus on until it was over. It was called Arts & Crabs Against Cancer—get it? Like arts & crafts but I’m at the Delmarva beaches so crabs are a big thing.

I wonder if the creators of the event realized the crab/cancer connection. I used a Maryland tote bag with crab decoration to carry my cancer notebook to each infusion and doctor visit—I still do. It gave me a grim chuckle to know that my home state’s claim to fame (crabs/Maryland crab cakes) was also the sign of cancer. I wonder if they know the crab connection for how and why cancer came to be called cancer. (So glad the filmmakers put that little tidbit right in the beginning of the PBS film.)

I could find very little about the event other than date, location, planned activities, and a vague mention that proceeds would benefit cancer research. There was no website, just a Facebook page. After the event was over, on Monday or Tuesday I saw a thank you post on their page, with the note that the money raised would go to “12 fantastic cancer-battling causes”.

It is often noted in cancer blogs that words have meaning, be careful with them. So the “12 fantastic cancer-battling causes” is disconcerting. I think they mean organizations, not causes—isn’t the actual cause “battling cancer”? But even worse—which 12? How do I know they are reputable? Is Komen, with their lack of financial support for metastatic breast cancer, one of them? I’m pretty hell bent on NOT giving them money.

I did not go and contribute money, and even if I knew the designated organizations, contributing money is not in my budget these days. So should I speak and make a fuss? Should I point out that this is another classic example of “just say your fun event is for a good cause and people will come and think well of your business”?

I mean the event planners (I think it was a restaurant partnered with other non-profits but I may be wrong) no ill will. I get it, this is how business and marketing works. There has to be “something in it for me”. Their hearts are in the right place, and probably have other motivations to create such an event—like a loved one with cancer, perhaps.

But I still wish the benefited organizations (not causes) had been listed up front, and prior to the event taking place. Consumers are being trained to think a “good cause” is a good enough reason to spend money. I don’t need to go into the economics of it all—I’m sure far smarter bloggers than I have tackled this. It just bugs me so much. I research every major purchase, even little ones too. I assume others do so as well. I want the most reliable vehicle, the best coffee maker, the best and most reliable laptop. I refuse to throw money away on shoddy products. Why is this attitude not used in regards to cancer organizations too? Sadly, most people don’t take the time to find out if a non-profit is just wasting money. So it would not work if I went to the organizers of the event and said, “hey maybe more people would come to the event, make it successful, if you revealed the beneficiaries”. Because it would not make any difference, people still show up. “For a good cause” was a good enough selling point.

My annoyance with this topic was compounded when I ran across this statement complete with picture: “Pete Townshend and Eddie Vedder announced a ‘Celebrating the Who’ benefit concert for cancer”.

Sigh. I’ve tackled this before, as have others. We all dislike it when the retail clerk at point of sale asks if we’d like to give money to breast cancer. Uh, no. I want to give money to KILL breast cancer. Leaving off the word research or whatever is so important to many of us. The caption assumes that anyone reading it would know of The Who’s long-time support of a UK charity for teens with cancer, and their creation of a mirror organization in the U.S. Only a jerk would think Vedder and Townshend are trying to do something to benefit cancer itself.

Hey, I never said was NOT a jerk—I AM a jerk! So should I contact the media sources that keep using that or a similar headline, to correct them? Make passive aggressive, finger-wagging statements in comments sections?

This slogan culture, this short-hand way of speaking, this skipping over the details, is doing a disservice to the general understanding of cancer, how charities and fund-rasing works. Yes, I realize I’m a bit over-wordy here on this blog sometimes, so of course I think this way. It’s just that every time I see slogans on ads that say “support cancer” or “benefit for cancer” it feels like hearing nails on a chalkboard.

To me, this is just a small piece of the puzzle of the awareness vs. understanding or education challenge. People like to shop for a cure, show support, but they don’t really know what it means, if the “product” (the charitable group) is any good–and why should they care? They aren’t stuck with the crappy product (not enough money spent on research, too much spent on self-perpetuating ad campaigns). But we are stuck with it.

So, yes, maybe I’m nitpicking today. I’ve just seen this type of thing too many times. I don’t have the energy to bring it up every time I see it. Will it make a difference even if I did?

I’m not even going to go into the clichés I’ve read and heard too often, and the bad compare-diseases-to-get-attention strategies that are just wearing me out lately. Not now, not yet, some other post.

I’m so tired of the way society talks about cancer.

April Is October Part 2

Ugh, April—and May a little bit too—resembles October in my area. Like, spring is here, time to run and walk in a marathon and let’s do it for breast cancer and wear lots of pink while doing it. I just ran across a notification that the annual walk at one of the beach towns in my area is to commence in an hour or so. There is another walk in another beach town next Sunday.

I was very upset last year after the walk that is to take place today happened and the pictures popped up on a friend’s page. Interestingly, this particular walk does NOT benefit Komen, but rather a local breast cancer organization and the money stays in the state to help local women. While I applaud that, it does not stop the organization and the walk from draping itself in Pink and feather boas and looking like a big party. The pictures that upset me so much last year showed a woman in her athletic walking gear, wearing hot pink bras and panties over the gear, with dollar bills stuffed in the waistband of the panties and in the bra cups, stripper style. I guess it was all in the name of fun, but I was disgusted anyway. To me is was just another example of how breast cancer is sexy fun times to so many, even women that I suspect are usually much more rational and likely even old-school feminists (I slightly knew one of the subjects in the photos, one NOT wearing the awful attire). I wanted to rant about it back then, but I was far too angry. I mentioned it in a general rant last October. I casually mentioned how it looked like a sick bachelorette party, and I still think that way.

I notice this year the event has added a subtitle to its name: “a fun event for a serious cause”. I find this interesting. I’ve noticed a shift in discussions/comments on social media, and in even professional articles in regular news publications. There is a bit of defensiveness, and I’m seeing phrases like: “I don’t hate pink” or “it’s not popular, but I like boas….” or things of that nature. It has begun to cross my mind that all the bloggers and/or advocates criticizing Pink and the party atmosphere actually had an impact. Perhaps the average person is starting to understand that those of us who’ve pointed out that chemo and disfiguring surgeries are no party are tired of seeing our ongoing awful experience glamorized.

I know I cannot hide—I will see many ads for the upcoming race (which IS an official Komen event). I hope I do not see the same nonsense that happened last year as a repeat on my feed. I get it, people want to have a good time, and just because I’m offended does not make me right. Maybe the women behaving this way even “get” the gravity of breast cancer—hell, they may be patients their own selves. I’m being judgmental, I know. It’s just that I know that when the average person sees pictures of breast cancer as sexy fun times, they will look at me and others who share my point of view and wonder why we’re not having a sexy fun time with our cancer too.

I am looking forward to June.

Maybe Mayberry Ain’t So Bad

A few times on this blog I’ve mentioned that I live in a rural beach resort area, about 2 hours away from places like D.C., Philly, or Baltimore–home to John Hopkins. I live in a small town—think that old TV show about Sherriff Andy Taylor and Barney Fife—yes, sometimes it is like Mayberry here. While I like that, it can be a little limiting when it comes to health care. Rural areas, with their poor financial compensation offers, do not attract many doctors, and breakthroughs in treatment, cures, discoveries, etc., will not happen here. Hell, you could say that we have a severe shortage in health care options, especially since so many folks retire here and with an aging population health issues increase. In short, health care is a different animal in a place like this. I read so many blogs written by patients who went to Dana-Farber, Sloan Kettering, or whatever—and that just is soooo far from my reality.

Before I got cancer, I did not really care very much about that sort of thing—in fact, I would staunchly say that everything, including medical care, was just as good here as anywhere. After my false negative—which was due to human error, not a case of technology not producing an image of a tumor—and after hearing many other stories of misdiagnosis from clients—I began to think that health care is best done elsewhere. But schlepping “over the bridge” (the Chesapeake Bay Bridge, sometimes there is a whole “thing” about which side of it one hails from, as in, those of us on the east, Delmarva, side are just dumb hicks) is not feasible for me, financially or in terms of time to spare, etc.

I am now changing my mind again and thinking OK, maybe diagnostic abilities here are not the best, but treatment is better than I thought.

Not long after completing treatment, I attended a small-time local conference about breast cancer. A doctor gave a presentation and at the end, as almost a footnote, said that more doctors and patients should consider the unusual timeline of chemo first, then proceeding to surgery, upon a breast cancer diagnosis. I remember kind of going “hmmm, that’s funny” as she walked off the stage.

You see, I was told emphatically by the breast surgeon who diagnosed my cancer, and then the oncologist who treated me, that shrinking the tumor with chemotherapy first, and then having surgery and radiation was the best plan. It was of course, my choice, but they stridently urged this course of action, despite my not uncommon desire to “cut that THING out of me as soon as possible!!!” I heeded their advice. It worked wonderfully; there was only a small in situ piece left in the nipple (the devil that started it all) after chemo. That is down from a 6.6 cm tumor that was taking up most of the space in my small breast. Not only did the chemo first approach work for me, it was also implemented for my aunt, diagnosed just a couple months prior to my own diagnosis. My own experience and the experience of a relative closest to me had this “chemo first” plan, so I did not view it as unusual or new (remember, this is back in 2010).

It did not occur to me that surgery first was the most common path. At least not until I started reading blogs and reading how many women seemed to have surgery first. But reading the latest “Cure” magazine interview with Joan Lunden has finally made me go: OK, what the heck?!

Note—yes, there are many things I could be cranky about in terms of Lunden/all celebrity cancer stories, but I’m going to limit my discussion to this one item for now, for this post.

In the article, which I’m sure everyone has read, her decisions about treatment were under the section called “Trying Something New”. Unless I really read that section wrong, it implied that the chemo first regimen is kind of unusual:

“… there is still resistance to deviating from the longstanding dogma of surgery, then chemo, then radiation. The benefits of pre-surgical chemotherapy, particularly in the type of breast cancer Joan Lunden had, are abundantly clear.” – See more at: http://www.curetoday.com/publications/cure/2015/winter2015/a-two-way-street-joan-lunden-shares-her-cancer-experience/2#sthash.fQlogQBD.dpuf

When the doctors presented the idea of chemo first to me, they did not do so with any indication that this was a new or uncommon path, or even a deviation from the norm. They merely said that my tumor was so large, surgery at that time would be disfiguring. Chemo would hopefully shrink it to a manageable size. It did not sound like some new-fangled, cutting edge, wowee-zowee idea. No, to me, it sounded like good ol’ country common sense. Glad the doctors I encountered in my Podunk region deviated from the dogma! I was able to have a simple lumpectomy, and while I’m not happy about the removal of my nipple, I recognize my situation could’ve been so much worse—that I am more fortunate than most.

I have grumbled, and will again I’m sure, about the impacts of having cancer in a rural area, but I’m glad to know in this one aspect at least, my care was not so “Mayberry”—even if I did not realize how new-fangled my experience was at the time!

I am still trying to wrap my head around this concept. It seems strange to me that the treatment that I experienced almost five years ago is considered new and is being discussed as such by a celebrity. I’m not sure what I think about it. I’m just glad my oncologist was smart, informed, and open-minded enough to embrace it.