News Links, 11/11/2013

courtesy TIME Magazine

courtesy TIME Magazine

Portraits of Previvors and Survivors.  Beautiful.  Time Magazine.

Eating clean for your health.  Huffington Post.

Foods every breast cancer survivor should know about.  CNN.

Fighting inflammation with food.  Health Central.

The “war on cancer” hasn’t gotten us very far.  New York Times.

There is no cure and it’s time to get pissed off about it!  Act with Love.

Love this girl and her blog.  Well said, Andrea.  Collaboration is the new competition.  Brave Bosom.

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.

Yes, We Have Holes, But We Carry On

brca world - strengthWe gain strength, and courage, and confidence by each experience in which we  really stop to look fear in the face… we must do that which we think we  cannot.  — Eleanor Roosevelt

We are stronger than we know.  Fear and circumstance knock us down, but we are resilient.  The world continues to move around us and, though we are surprised and spiteful of this constancy, we move along with it.  That, in itself, is strength:  the ability to continue breathing, despite the holes in our lives, carved out by loss.  We carry on.

Strength does not always mean fight.  It does not mean a lack of tears or terror.  It means continuing to live despite the loss, and fear, and hurt.  Despite the holes.  It is drawing courage from the experience.  It is a refusal to stop breathing.

I have added a few new holes to my heart this year.  One was added this weekend.  Each time, I crumble quietly, in isolation.  When I was diagnosed with breast cancer, I panicked.  I collapsed.  But there were decisions to be made…other people to comfort…life continued.  Curling up in the fetal position, in a cave somewhere, wasn’t an option (I checked).  What are our options?  We make our decisions.  We continue to live.  We carry on.

Getting diagnosed with a BRCA mutation, or cancer, drops you to your knees.  But you are more powerful than you think.  You will move on.  You will live.  It may not seem like it, but you will.  You have reserves of strength you never knew possible.  You will choose your path — one decision at a time.  You will pick yourself up and keep walking.

It never ceases to amaze me what might and courage can be found in this community.  It is not always the in-your-face kind.  Sometimes, it is quiet.  It is the will to carry on.  And it isn’t just strength of the individual, but of the community.  When you can’t find the will to walk on your own, we are here to pick you up and carry you.  We are not fazed by the holes, as we have them too.

Find your power in your hurt.  Those holes can breed courage.  Define yourself by this, not by those damn BRCA genes or tumors.  The wounds we suffer are not who we are.  We are the strength.  We are the stubborn refusal to yield.  We are the hands that help others walk.  Define yourself by these qualities, not by the holes.  The holes may remain, but we will carry on, as THAT is who we are.

Opening for November 11, 2013

Strength to fight what needs to change.  Suffragettes.

Strength to fight what needs to change. Suffragettes.

Dear readers,

Happy veteran’s day! Thank you to all the men and women who serve and make our country great. Thank you, also, to the military families, who sacrifice so much.

Sorry for the short column on Friday. I posted an article about pregnancy, BRCA, and Lauryn Hill, Saturday.  If you missed it, scroll down.

Today’s theme, if there is one, is strength.  We have a video coming your way that is, in my opinion, the epitome of courage and strength.  I spoke with a newly diagnosed woman this weekend.  She didn’t know what a BRCA gene was until a few months ago, and now, not only does she have the gene mutation, she has breast cancer.  No one in her family has had cancer.  She was blind-sided.  The strength she is demonstrating, by not collapsing under the weight of the diagnosis, is inspiring.  Sometimes that’s all you can do, just keep breathing.  Keep breathing and living.  That, in itself, is strength.

If there is anything YOU want to read about (or write about) here on BRCA World, please let me know.  We are a community that is stronger together.  It’s one of the biggest blessings in my diagnosis, that I have found all of you.  We stand together and fight together.

Yours,

Shannon

Now Let Me Pray To Keep You From, The Perils That Will Surely Come

 Kimi has defeated the odds, battling breast cancer whilst pregnant. Both she and baby-on-the-way are doing well - her positivity and strength shine through in these pics! She wanted to bare all to help raise awareness!


Kimi has defeated the odds, battling breast cancer while pregnant. Both she and baby-on-the-way are doing well. She wanted to bare all to help raise awareness.  Caption and picture by Nikki Holmes

(Programming Note from Shannon:  FINALLY getting a chance to post this.  I’m sorry for the delay!  The picture accompanying this article is absolutely inspiring.  A friend of mine shared it with our previvor group on Facebook and I knew I needed it for BRCA World.  Strength, perseverance, bravery…all that a mother should be).

(Goodness, I used to love Lauryn Hill’s “The Miseducation of Lauryn Hill.”  It was my jam back in the day.  “Zion” — the title of this article is a sampling of the lyrics — is one of the most beautiful songs about having a baby.  For anyone in a “God, I am blessed to have this child” mood, check out the lyrics.)

As our knowledge of cancer grows, so does our vigilance.  We are learning earlier and earlier about our risks.  Those of us with long family histories of cancer, are aware from an early age of its potential to strike us.  Many of us must make life-altering decisions in our twenties and thirties, when we are still learning to be adults.  We are on the cusps of our careers; our families are young, if they have even formed yet; and we are just settling into our skin enough to catch glimpses of who we might become.

Breast surgery is usually the first decision made.  For most, it is the easiest to agree to and protects from the most immediate threat.  How to guard against ovarian cancer is a much more difficult choice.  I know, for me, it is also the scariest.  Although the risk of ovarian cancer, in carriers of the BRCA mutation, is lower than breast cancer, ovarian cancer is more difficult to detect.  Dubbed, “the silent killer,” it is often not discovered until an advanced stage.  It is one of the deadliest forms of cancer among women; and only 20% – 30% of women diagnosed with a late stage ovarian cancer, will be alive 5 years later.  There are no good early detection tests.  The blood test most commonly used, the CA125, is not very accurate.  Many doctors (mine included) prefer not to use it at all, due to the unreliable results.  The only true option to reduce our high risk, is a hysterectomy (removal of your uterus) or salpingo-oophorectomy (the removal of your fallopian tubes and ovaries).

For younger women, this means making decisions about your future family and children.  It is recommended that these preventative surgeries be done by age 35 – 40 (two of my doctors recommended 35 y.o., but I know some women’s doctors have said 40, as well).  With BRCA and HBOC, your baby clock starts ticking faster the moment you become aware of these decisions.  Many women feel rushed.  They need to not only figure out what they want their future family to look like, but plan when and how they want that family to come to fruition.

There are many considerations for those at high-risk of ovarian cancer.  Eggs can be frozen.  Children can be adopted.  There is even embryo testing that can be done to determine whether you would pass on the BRCA mutation to your child.  This is most often done during IVF, when doctors can develop embryos and implant only those that do not have the mutation.

This brings up a sensitive topic in our community.  Do you have a moral obligation to avoid passing along the BRCA mutation?  I don’t have an answer to this.  I look at my son…his wide-eyed pleasure in the world.  He was a preemie that could not breathe without assistance; he fought through seizures and a hole in his heart.  Yet, he smiled constantly…from the very first day.  With tubes in his nose, belly button, and mouth, he smiled.  I can’t imagine him not being in this world, and I can’t imagine him having cancer.  Does he carry my mutation?  I have no idea.  Would it have changed my decision to carry him?  No.  Perhaps that is selfish, but my choice to have him would be unchanged.  By the time he is old enough to test, he will know about his risk.  I will make sure of it.  I am hopeful, though, that there will be a cure.  That is why I preach so loudly about it.  I need a cure for him, not myself.

Aside from all the choices we face, we must also recognize the risk.  Breast and ovarian cancer are, sometimes, estrogen responsive.  The influx of hormones during pregnancy can increase the risk of cancer in BRCA mutations (click here, here, and here for studies supporting this statement.)  Furthermore, if you have had a cancer diagnosis, you are encouraged to wait, at least, 2 -3 years before becoming pregnant, as it can increase the risk of recurrence.

Having a BRCA mutation, or a strong family history of cancer, means you are faced with a million impossible decisions.  Early in my life, I did not know if I wanted children of my own.  I enjoyed living selfishly, with nothing to constrain me.  I adored other people’s children, and had decided to be the super-cool aunt that was really involved in the lives of my nieces and nephews.  As I grew older, my dreams changed, as they so often do.  How are we supposed to make all these decisions so young?  Our lives change; our desires change; but we are forced to decide the shape of our future.  It’s unfair and impossible.  It is the high cost of cancer.

Personally, I dream of having another baby.  There are so many risks and decisions involved, my husband is not sure he wants to follow that road.  I can close my eyes and imagine a time when these decisions are unnecessary.  There will be a cure, casting all of our doubts and heartaches aside.  This is why we fight.  This is why we advocate and educate.

 

Opening for November 8, 2013

Dear readers,

Yesterday became even crazier than I expected and I didn’t have a chance to post the pregnancy article. I’m going to fix that today — promise. Expect a bigger, though late-starting, column today. I’m blogging on-the-go from my phone right now, probably won’t be able to post the big articles until lunch time.

Do me a big favor and find a reason to be happy today. I’m tired of seeing people choose to be unhappy because they refuse to see the good around them. Caught up in themselves and their perceived problems, they can’t see past their own nose, to realize they are missing out on life. Take time to laugh and smile. It will improve your life exponentially, I promise.

I’ll jump down from my soapbox now (I get a nosebleed if I stay up there too long). Have a great weekend, and check back in this afternoon for new post.

Yours,
Shannon

News Links 11/07/2013

brca world - newsThis is fast becoming my favorite website.  Free the data!  Upworthy.com

Join the kickstarter campaign for this documentary about male breast cancer.  Kickstarter.

A quick rundown of the P4C2013 conference.  PACE

A wonderful blog post about the need for mental health care in cancer treatment.  judesthinkin

What you should NEVER say to someone with cancer (and some things you should).  FHRCRC

7 Things calm people do differently.  Huffington Post.

Diet changes the may reduce your risk of cancer.  U.S. News.