Archive | September 2013

The Ugly Little Secret about Pinktober

rethink-pinkFor those living under a giant rock, October is Breast Cancer Awareness month.  Outside the cancer community, it may seem innocuous.  The town is painted pink; men and women of the world hold hands and celebrate strength and hope.  Honor the women in your life by shopping for pink ribbons and supporting the fight against breast cancer.  Everyone is anti-breast cancer.  How can you NOT support the month dedicated to it?  But here’s the ugly little secret that most people don’t know:  women within the breast cancer community, most who have had breast cancer, HATE October.  I’m not talking, simply, being tired of pink.  Nope.  I’m talking pure, unadulterated HATRED. When I caught my first whiff of the hellfire being wished upon the pink ribbon, I was shocked.  I had no idea so many women could feel so passionately about the dismantling of a month dedicated to supporting them.  Digging a little deeper, though, I began to understand. For some, October is a month full of constant reminders of what they have lost, will lose, or are fighting against.  Cancer strips away everything you have.  There is no sympathy in it.  There is no logic to it.  It will ravage everything you hold dear and laugh as it moves on to the next.  For many, there is no hope, no strength, no courage.  It is only fear and loathing.  If you are that person (which, many are), you don’t want the constant reminder of an upbeat, perky pink shirt, bracelet, or ribbon.  Bitterness comes easy in the face of pointless (but pink! and glamorous!) death. For others, it is the “pinkwashing.”  Breast Cancer awareness has become fashionable and trendy.  As such, a lot of companies take advantage of the well-intentioned consumer.  Companies make all their wares a pretty pink color, claim that buying it will support breast cancer, and BOOM!  Instant rise in sales.  The problem, though, is that many of those cutesy little items are doing jack sh*t for anyone but the company that sells them.  Sometimes, not a single dime from those sales goes to support cancer foundations or research.  By wearing that item, companies say you are spreading the pink message and that, in and of itself, is support.  Don’t believe me?  Check out this link:  http://thinkbeforeyoupink.org/ BC Action has, kindly, document cases of companies doing just that (inspiring the vomit-inducing rage experienced by many). The pinkwashing continues with many companies that donate a very small portion of proceeds, or make a set donation each year, regardless of your pink purchase.   This is where things get a little gray for me, personally.  In my opinion, a contribution is a contribution, and every little bit helps.  Yes, we need to strive for more.  Always.  But, I can’t muster up the full-body hatred here, as some women do.  In this community, that makes me uncool. The loudest advocates, the ones I admire, despise pinkwashing in any shape or form.  They condemn the uninformed consumer for their ignorance in purchasing pink products or waving the pink flag.  I don’t know…I get it, I suppose, but I don’t always agree with it.  The advancements we have made are not good enough.  More money is needed for research and education.  Consumers should donate their money with caution.  But I can’t hate people for trying to help, even if they are going about it “the wrong way.”  Read the link I gave: http://thinkbeforeyoupink.org/ (for your convenience).  Know where your donations are going.  Make smart decisions as a consumer.  But please keep trying to help. October has become more about opportunism and commercialism, than anything supporting breast cancer.  That’s where a lot of the hatred stems from.  There is something I like about Pinktober, though.  It’s an opportunity.  It began as a month to focus our efforts on advancing treatment, finding a cure, supporting those who are affected.  We need to cut through all the bullshit and get back to what’s important.  Let’s educate people.  Promote research.  Advocate for the patient.  Awareness is crap.  We are all aware of cancer.  Awareness is weak and does nothing.  But knowledge…knowledge can lead to change.  Let’s take back this month and make it a time for advocacy and change.  Take time this month to remember those you have lost to breast cancer and those who are still living it.  I bet everyone of you, if you have not been personally touched by breast cancer, know someone who has.  Use this month to honor them (or yourself) by becoming an actual advocate for a cure; don’t just be aware that we need one.

The News: September 30, 2013

NewsMost of the news articles are ticking me off today (see my earlier “Bring on the Bitch” post).  These are the two links that passed muster:

http://www.palmbeachpost.com/news/lifestyles/health/its-in-the-genes-understanding-the-importance-of-g/nZ7HG/

  • THIS is an article I can get behind!  Superb breakdown of BRCA testing, who should test, and what happens after the test.

http://www.oncologypractice.com/oncologyreport/news/top-news/single-view/bmn-673-monotherapy-makes-splash-in-brca-mutated-ovarian-breast-cancer/3242bab666c854e14748686fba8e18f7.html

  • News of a promising new treatment in brca mutations.  Very science-oriented read, but the bottom line is that they’ve had a very successful phase one in a clinical trial.  Fingers crossed that it continues…

http://www.deadline.com/2013/08/hbo-setting-julie-delpy-to-script-cate-blanchett-starrer-cancer-vixen/

  • This is older news that I missed.  HBO is making an adaptation of the book, “Cancer Vixen.”  It’s a play on a comic book heroine, who has cancer.  I, actually, just read an article on psychologytoday.com condemning “Cancer Vixen” and other books like it.  They believe there is a problem with all of these portrayals of a strong, stereotypically feminine, upbeat woman who, inevitably, beats cancer.  According to the article, it takes away from those who cope differently.  I see their point but am not sure I agree.  Success stories are needed when you begin your journey (at least, I needed them).  You need your confidence boosted; you need to see others before you who lived.  “Cancer Vixen,” is funny and sassy.  Cancer is neither.  Soon enough, you realize the stark realities and cruelty of cancer.  Sometimes, you need the humor and the fun, too.  Plus, the move is going to have Cate Blanchett.  I love her.

Bring on the Bitch…

knowledge is powerI warned in my opening that I might be especially bitchy today. It’s happening sooner than I imagined. I am looking through news articles to add to the site. There’s a ton. Tomorrow marks the beginning of Pinktober and everyone is trying to capitalize spread awareness.

Anyway, I came across an article on ABC News.  “5 Things You Need to Know About Breast Cancer”.  ABC has a giant platform to speak from.  They reach millions of people every day.  In this article, though, they’ve completely wasted their voice and our time.

What five things does this massive news conglomerate insist we NEED to know about breast cancer?  I’ll break it down for you:  some cancer is more serious than others; breastfeeding and exercise are good for you; drinking alcohol is bad for you; talking to your doctor is a good thing.  Did that blow anyone’s mind?  Raise your hand if you already knew each and everyone of those things (because you have common sense).

Don’t waste our time with articles like this!  Let’s try to truly EDUCATE people.  Talk about screenings; talk about the importance of knowing your family’s health history; talk about how to properly do self-exams —  ANYTHING other than the mindless purging of facts that everyone has heard before.

Here’s some facts that are, hopefully, a bit more informative:

  • Men get breast cancer, too!  It is less common, but it happens.  In 2011, 2,190 new cases of male breast cancer were expected.  Men can also pass the BRCA genes to their children.  Mine come from my father’s side.
  • Risk factors for breast cancer include:  family history; early or late menstruation; late first childbirth or no childbirth.  These still only account for, approximately, 35% – 50% of all cases.  Despite all the research, we still know VERY little about what causes breast cancer.
  • Mammograms miss 25% of all breast cancer cases and are especially ineffective on young people (pre-menopausal), due to the density of their breast tissue.  This makes knowing your family health history and self-exams  SO important among young people.
  • Breast cancer is not a post-menopausal disease!  Young people get it too.  Know how to do a self-exam and DO IT.  Know your family history so you can get early screenings.  Be pro-active.  Protect yourself.
  • Fracking is not only bad for the environment, but it exposes the broader public to toxic chemicals linked to breast cancer.

Try to sort through the crap that this month is going to throw at you.  Find articles that will teach you, not only awareness, but how to be your own advocate and guard against this disease.

Opening for September 30, 2013

Good morning, readers!

Well, yesterday’s public launch went pretty well.  I edited a few documents after the fact, but it should be taken care of now.  My friends and family have been INCREDIBLE in their support.  I love you all and thank you — it means the world to me that you have read my posts.  Please spread the word, so I can reach others like me.

On the agenda for today is a briefing of the continuing fight in gene patents; my (likely) long exploration of Breast Cancer Awareness month; and some smaller news tidbits.

It might be a rough couple of days for me, as it is the anniversary of my diagnosis, and I’m not sure how I feel about it.  So, bare with me if I’m especially bitchy.

Yours,

Shannon

Opening for September 29, 2013

Previvor week

Dear readers,

I’ve been thinking a lot about self-esteem, lately.  How we look and how we feel are, for good or bad, inextricably entwined.  When you throw cancer into the mix, all hell can break loose.  Today’s main post addresses this unfortunate combo.  Starting today, it is hereditary breast and ovarian cancer week.  Visit FORCE’s website (www.facingourrisk.org) and the Young Previvor public page on facebook, for more information.  Like breast cancer month, I feel like this week should be about education, not awareness.  Awareness means nothing.  Unless you are living under a rock, you are AWARE of cancer.  How do we go from awareness to change, to advancement?  That’s what the focus needs to be.

Yours,

Shannon

Mastectomy Pillows

mastectomy pillows

Mastectomy pillows were a must for me after surgery. The softer the better. You slip them right under your arms (into your arm pits). That area will be sore after surgery and, especially (at least for me), after fills, if you choose to go the expander route for reconstruction. I took mine everywhere with me. I slept with them; watched tv with them; rode in the car with them. Mine have been destroyed by my new puppy, otherwise I would show you a picture of those. I found the ones pictured above, on Etsy. You can also make them yourselves, just google “mastectomy pillow patterns” and you’ll find quite a few links. Biggest thing: make sure they are soft and squishy!

http://www.etsy.com/listing/120177140/pink-ribbon-ultra-soft-breast-surgery?ref=listing-shop-header-1

Uniquely Feminine

Christina Applegate tweeted the above video last night from the Huffington Post. It’s touching and beautiful, and I recommend watching it. The women have lost their breasts, but not their feminine identity. It got me thinking, though. The hereditary cancers, the BRCA genes, they strike the most uniquely “feminine” parts of our bodies. Does that make us less of a woman? Absolutely not…but how many women, affected by these cancers, DO question their femininity…how many feel less than?

My decision to have a mastectomy was an easy one. I wasn’t attached to my breasts. This decision surprised many of my friends, who assumed it would be more difficult for me. My boobs were part of my identity. They were naturally large, especially for my size. They earned me the affectionate nicknames, “boobs McGee,” and “big boobs,” (they were not the most clever of friends). My description was, often, “short, blonde, big boobs.” They, practically, had an identity all their own. When it came down to it, though, these breasts were trying to kill me and that made the decision and my loss much easier. It got to the point where I couldn’t wait to get them off me.

My next step, now that I am through my breast surgeries, is to decide what to do about my ovaries. I have a lot of thinking still to do and a lot of decisions left to make, but I know they have to go. How and when are up in the air. I know this decision will be much more difficult for me. Emotionally, how will I feel without them? I won’t miss periods; I won’t miss the cramps. I won’t enjoy the hormone fluctuations and hot flashes, but they will happen someday regardless. The physical loss of the ovaries, is not the problem. It is what they represent: children. I know I can freeze my eggs. I know I could adopt. Those are both very real, very wonderful options. But the reality of not being able to become pregnant naturally, is difficult for any woman. Logic and emotion don’t always sync. Logically, I know this does not make me less of a woman. It would be insane to think so…but will the emotional loss be tempered by that logic, or will I feel an irrational hit to my femininity?

I do not believe any woman should feel less than because of cancer. I know that I am purely woman. My strength is entirely female; my essence is female; the way I walk..the way I think — I can multitask like no man ever dreamed! No cancer can take that away. We need to find what makes each of us uniquely feminine, so that we don’t lose our identity with our body parts. I will not let cancer dictate who I am, only I can do that.