Interesting tidbit on Huffpost. Here are the comments I sent to Huffpost in response:
There are several interesting aspects to this article. 1) It seems to imply that the either the medical industry is pushing women to get unnecessary procedures and/or women are not making informed decisions. While I appreciate the idea of a watchdog attitude toward the medical industry I worry the motivation behind it is to cut medical costs, but not for patients. 2) It keeps using “survival” as the only measuring stick. Yes, surviving is the best; but why not study risk of recurrence that does not end in death? Maybe women go for mastectomy to avoid not just dying, but going through the hell of cancer treatment again. 3) The last sentence, yes, it would be interesting to see if perhaps women want a sense of control (cancer robs one of that). After eating right, exercising, not drinking, and all the other crap, being a woman with breasts is still the biggest risk factor, why not eliminate it?
Love this, from another blog I follow on Tumblr. I “get” why other cancer patients get sick of the pink ribbon, but I hope these folks do not think just because I have “that special cancer” that I’m automatically pro-pink. There is a lot to be desired about pink October, and it just makes me sick to even see the ribbons most of the time. There is a lot of anger out there, I hope corporations that use the pink start to wake up before it bites everyone in the ass.
So found this on Huffington Post. People will see “unnecessary breast cancer treatment” and not make it to the third paragraph which states “(m)ammograms are still worthwhile,” as well as the rest of the article which essentially says science does not know how to determine which cancers will progress into a threat. So…why did the study not go ahead and figure out how to tell when a cancer needs to be treated or not? I mean is the current method, wait and see if it spreads around, wrecking women’s breasts, so more mastectomies can be done, or if patients die? But as offensively pointed out in this post, screening is “only worthwhile if it finds cancers destined to cause death”. I mean, WTF? I’m still alive (hurray!), but I’d rather not have had the cancer at all, if you don’t mind!
I’m not exactly a big fan of mammography, being someone who got a false negative on her very first mammogram. I cannot believe that a false alarm is as bad as cancer…at least there is relief at the end of a false alarm. I live with the fear and stress of recurrence everyday…and this is after the stress and fear of having and being treated for cancer.
And I just love the last paragraph-yes, science needs to better define what treatment is really needed, or better yet, better DEFINE PREVENTION, where is the funding for that!
Seeing the success of Breast Cancer Awareness Month, so many other diseases are using the word “awareness” to bring attention to “their cause disease”. But the word is overused and has lost meaning. My knee-jerk, smart ass response these days is, ”I can’t get any more aware, thank you”. In articles and online discussions I often see the comment when the NFL is wearing pink, or when you can buy pink kitchen appliances, or when you see (name random thing) pink, we’ve reached our awareness saturation point (in terms of breast cancer). I’m inclined to agree, especially since when the comment comes from someone with whom agree on the point of being sick of all things pink.
But maybe this view is wrong. Awareness may be at saturation point in the target audience for breast cancer cause marketing, which is middle class white women with the money to spend on any product with a little pink slathered on is. Are poor and non-white women being reached? I know that special education and outreach programs exist to remedy this, but I cannot see results beneath all the pink (and white). Unless the target audience can see themselves getting cancer, they will never really be “aware”. Where is the pinkification of products preferred by African-American women, by Latina women, or affordable to the poor?
Which leads to another, larger point—I was “aware” of the pinkness and assorted hoopla each October prior to my own diagnoses, but as someone under 40, I didn’t really see myself as the target…I did not see myself getting cancer. I was aware I could get it, aware of my risk factors, etc. I’m sure some would point out to me that awareness led me to get a mammogram that caught my cancer and saved my life, except in my case, that is not true (see my about page).
So I’m aware, you’re aware, she’s aware, he’s aware. Big whoop. What is being done about it? I modestly propose a change of focus and title for all these disease campaigns. Cancer is too complex for a cure, I get it, I read The Emperor of All Maladies. How about something like stop X cancer from killing people? Or better yet, dare I ask…Prevent ALL Cancer?
The other day during my dog walking duties, a large black SUV pulled up next to me. I run into lots of people in each of the neighborhoods in which I house/pet sit, so I was not alarmed—it’s usually someone who knows the dog I’m walking. I was shocked to look up to see the husband of a former co-worker, neither of whom I’ve seen in over 6 years. He’d aged a little so it took me a second or two to recognize him. Yet, he recognized me from behind (and I was wearing bulky layers, long coat covering my ass, so get your mind outta the gutter), from down the street.
Since I lost my hair in chemo, and it continues to come back soooo sllooowwwly, I’ve felt incognito. (Actually, I’d like to be incognito, for a number of reasons, but that is another post.) I hated my short, super-curly (like Gene Wilder or Tom Hiddleston curly) hair so much that when people who had not seen me in a while (and did not know about my cancer) would mention my short hair, I was quick to say I’d had chemo…like OMG you don’t think I’d have this hairstyle on purpose do you?!!
But I realize that I’ve changed so much mentally that I’m kind of surprised when people I associated with years prior to diagnoses know me. I guess I look close enough to how I looked before that I am recognizable, but me, the real me, has changed, all because in split second in 2010 I moved from the land of the well to Cancer Land. Even though I currently have NED, I am still a resident. As long as I have to keep my various oncology doctors in the contact list in my phone, I feel like I am under their care (especially since I still see them twice a year—two times too much). I look forward to the day I can delete oncologists from my phone’s contact list.
Got a design sketch proposal from a tattoo artist to cover my lumpectomy scar. A little background: I never got a tattoo in my college years (the 90s, when ALL twenty-somethings got them to express…er, individuality); I had problems committing to a picture I’d want on my body for the rest of my life (oh fuck it, let’s be real, I have problems with commitment in general). But now, I have numerous little blue dot tattoos that mapped me for radiation, and I have a substantial amount of tissue taken from my left breast, no nipple, and a 4 inch horizontal scar that even reconstruction will not hide. So I decided no reconstruction—I do not want a permanently erect nipple, and I’d have to get the areola tattooed on anyway. So why not do something else? So I’m getting the Red Hot Chili Peppers band logo put on there (I’ve been a fan for over 20 years without faltering, incredibly, so I guess I can make this commitment) with the words “If you’re going through hell, keep going”. The quote may or may not be from Churchill. I’d prefer it to be definitely his, but, so what, it’s a good quote that accurately sums stuff up for me. It is so much better than my other choices, both by humorist Dave Barry: “Scientists now believe that the primary biological function of breasts is to make males stupid,” and my personal mantra: “What I look forward to is continued immaturity followed by death.”
So now, just gotta decide with the artist about the placement of the quote—around the logo, or through it? After 2 years of making health decisions that will affect my survivability and quality of life, I’m ok with this decision not having to be so momentous.
A little over two years ago, a few days before my 39th birthday, I was informed that I had breast cancer. My 50-year-old aunt had been diagnosed that summer, so when I had my annual gyno, I demanded my first mammogram, even though I was under the recommended age of 40. Got the mammo a week later, with nearly an immediate result: negative—the all clear. My relief was short lived. About 3 weeks later I noticed my nipple had turned in on itself (the tumor began directly under it, making it difficult to detect). So the mammo was that rare thing: a false negative. Ultimately, after many tests I learn this: Breast Cancer Stage 3, ER and PR negative, HER2 positive (an aggressive form of breast cancer but not as much as being negative in all 3), a very large tumor that had not yet metastasized, incredibly.
From October of 2010 to January 13, 2012, I spent most of my time in and out of medical facilities. Chemo first to shrink the tumor and make surgery less extensive, then surgery, then radiation, and I finished off with infusions of Herceptin (at $13,000+ per session) every 3 weeks until this past January. Oh and throw in quarterly echocardiograms, since Herceptin wants to wreck the heart. It sucked, but I did ok. No matter how nauseous I never barfed. Never needed blood transfusion for low blood count. My hair even started to come back when I was on the less toxic chemo, and the chemo obliterated the tumor—there was nothing discernible to remove in surgery, so they just took surrounding tissue and a few lymph nodes, and that was clear. I seem to do well with poison. Not sure what to do with that, but whatever.
So I reflect today on the suckage—and the good stuff, like my cancer buddies—of the past 2 years. And all cancer patients (or anyone facing mortality) are “obligated” to have “learned something” and share wisdom. I’m not really fond of that crap, but I will say this: I did learn to cut out anything in my life that made me miserable, and learned how easy it is to do that. I re-learned to demand what I want, to the point of being a malcontent (not too insufferable a malcontent I hope). I had lost my way in life before I got sick, but I am back on track…and now I “just gotta keep on livin’, man. L-I-V-I-N.” (Matthew McConaughey as Wooderson in Dazed and Confused)