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My New Best Friend

This woman needs to be my new best friend.  Now.  She is awesome.  I wanted to send everyone a little smile today, and I can think of no better way to do it, then posting this video.  Deborah Cohen went in for her mastectomy and had a dance party with her surgical team.  I love it.  And I love the willingness of the medical staff to do this.  Dancing in the face of fear…I wish we all had such strength.  Check out the Huffington Post article for more on this amazing video.  Otherwise, just hit play and enjoy.  No other comments are needed.

Dear Doctors…

20131101-085225.jpgWritten by Krystin Tate

Somewhere along the line, we’ve all had (or will have) a visit with our GP wherein we find ourselves having to explain BRCA or defend our stance or prevention plan. Whether it’s doctors, nurses, or medical assistants, too many people in the field lack essential knowledge of BRCA mutations, and as we mutants continue to grow our ranks, it becomes more and more of a problem.

Luckily for us, there’s an app a book for that! Letters to Doctors, by Teri Smieja and Dr. Jonathan Herman, aims to educate medical professionals and laypersons alike about BRCA. Newly published, it’s already reached #1 in various genetics and medical categories on Amazon.

Getting here has been been a labor of love; over four years and many directional shifts, Letters to Doctors was finalized this year. When asked about her biggest surprise throughout the process, Teri said it was actually the behind-the-scenes work. Getting everything in order and into the form of a real, live book is even harder than actually writing the thing!

But it’s worth it. Teri says the authors want to create change in order to save more lives. “With the advent of genetic testing, more and more BRCA positive people such as myself are making pre-emptive strikes against cancer. Unfortunately there is much misinformation among those in the medical community and it is our goal to create a paradigm shift in the way doctors treat their high-risk patients,” she writes.

Their hope is simple in idea yet massive in execution; changing the way doctors practice is no easy task, yet undeniably necessary. Those of us in the BRCA world have all heard of doctors sharing misinformation – you can’t get BRCA mutations from your father. Men don’t get breast cancer. You’re too old/young/thin/fat/healthy/sick to worry about BRCA. Insurance won’t cover testing or treatment. BRCA is too big of a deal to handle, or on the flip side, BRCA isn’t a big enough issue to warrant attention. “It’s time to shake up the doctors in charge of our health,” Teri says, “We want to save lives.”

In keeping with that mission, all profits are going directly to charities related to BRCA/HBOC. The press release can be found here and you can purchase Letters to Doctors on Amazon.

Loving Someone With Cancer

via Angelo Merendino  http://www.viralnova.com/wifes-cancer/ Angelo Merendino

via Angelo Merendino http://www.viralnova.com/wifes-cancer/ Angelo Merendino

This photo essay killed me.  A husband took photos of his wife as she battled cancer.  The results will break the coldest heart.  Taking care of a loved one with cancer, in the best of times, is difficult.  I relied entirely on my family after my mastectomy.  My son was two years old at the time.  He didn’t understand why he could jump on mama, or be picked up, or lay on me.  At first, I tried to put a pillow over me before he entered the room.  That lasted about two seconds, as he would shout, “No Mama!” and throw the pillow into the corner.  My parents and husband were left to pick up the slack.  They also helped me change my drains, cook my meals, walk my dogs, and clean my house.  Without them, I would have been lost.  It could not have been easy — it’s purely a labor of love.  I could not brush my own hair and I struggled in the bath.  They were unwearied and loving, though.  And I had it easy.  For those who have chemo, or experimental drugs…I just can’t imagine.  The toll on the caregiver, to watch as their loved one struggles…I think it’s easier being the patient.

These photos were taken with such care and affection.  Each still is filled with such raw emotion…I don’t even know…you have to see it for yourself.  Click here for the article and to see the photos.

Take it for what it is: Dogs with Boobs

brca world - dog boobs

My cousin sent me this.  Though I’m more of a proponent of getting rid of the boobs to save the woman, this was meant to make us smile.  It wasn’t made under the guise of “awareness” or “fundraising.”  It was made by a woman with breast cancer, who wanted to make people laugh.  So, let’s not over-think it and just smile at the cute dogs.

Opening for October 25, 2013

Are you kidding me with this crap?!  It seems someone is making money off these t-shirts...I'm assuming it's NOT a breast cancer charity.  Way to play the victim.

Are you kidding me with this crap?! It seems someone is making money off these t-shirts…I’m assuming it’s NOT a breast cancer charity. Way to play the victim.

Dear readers,

Late last night, I Iearned a rather interesting thing:  the incredibly mature “motorboating” guys of Simple Pickup removed their video from my site.  After a bit of digging, I discovered that I’m one of the few sites they did this to, though there were others.  So…why BRCA World?  Is it because I am a smaller blog and can’t create much of a fuss (they don’t know me very well)?  Is it that they didn’t like my suggestion to meet with actual patients?  Their temper tantrum has spurred their followers to bully me, as well.  Apparently, I am a lesbian (how is that even an insult?!).  It also seems that feminism is a bigger plague than breast cancer (who knew?).  See?  Now, I’m pissed.  I haven’t decided how to respond, or if I will even dignify their pathetic attempts at insults with a response at all.  I’m trying to make a rational, mature decision (something they wouldn’t understand even if I spelled it out for them).

In the meantime, expect a new post from a new voice, this morning.  One I’m really excited about.  Also, the lovely Emily has a new yummy recipe for you.

I’m in a fighting mood today but I’ll try not to let my temper get in the way of education.  Find the goodness in those around you and enjoy your day!

Yours,

Shannon

Keep Your Money

Days ago, I posted about “Motorboating for Breast Cancer,” hands-down the most offensive “fundraising” campaign I have ever seen.  From your feedback, I gather you felt the same.  Click here for a refresher.

Well, here is the update:  the cancer charity refunded the donation based on the overwhelming response against the video.  Now, the makers of the video have responded.  They call us “haters.”  They call us a “small minority” that are ruining their attempt to do something pure of heart.  My head is about to explode from the number of insults I want to hurl their way.   They do not understand WHY our “small minority” is offended.  What they don’t seem to understand is that this “small minority” is comprised of the breast cancer community and we don’t want their money.  Please do not degrade us, then call us names when we fail to see the humor in it.  The arrogance of such an act is astounding.  Their money is a slap in the face to our fight.  It is insulting.  It demeans everything that we have lost.  It is not a lack of humor.  We are not being over-sensitive.  We, simply, want to be respected.

They ask what they should do with the money raised.  Aside from the snide comments I would love to make, I don’t know where they should put their money.  I, honestly, don’t.  Would anyone want it at this point?

The unfortunate and very sad part of this is that these guys are clueless.  They want praise for what they have done.  They want a pat on the back.  I wish they would spend time with cancer patients to figure out why there was such backlash, but I don’t know that it would help.  There is a sense of entitlement here that seems impossible to overcome.

Many of us have lost our breasts.  We can no longer breast feed.  We are covered in scars.  We question our beauty and femininity.   Sexualizing our loss does not help us to heal, even if you throw money our way.  In fact, that almost makes it worse because you then expect a “thanks” for the objectification.  I’m not sure any amount of money can make that acceptable.