Stop The FDA From Disproving Avastin To Treat Metastatic Breast Cancer

Please view this video or read on so that we can raise awareness about an upcoming FDA decision that will affect thousands of metastatic breast cancer survivors.

Avastin is an anticancer medication that many metastatic breast cancer patients respond to. As we move towards personalized medicine, we need better ways to evaluate who will and will not respond to a medication and assure that those medications that benefit subsets of the population remain available.

Both Komen for the Cure and the Ovarian Cancer National Alliance’s statement about this topi can be viewed at :http://ww5.komen.org/KomenNewsArticle.aspx?id=6442452367. The FDA decision on the drug Avastin was scheduled to occur on December 16, but has been postponed for the time being, so we have some time to act, but not much.

Please sign the petition by a woman for whom Avastin is the only drug benefitting her: http://www.thepetitionsite.com/3/stop-the-fda-from-disproving-avastin-to-treat-metastatic-breast-cancer

Write a letter/e-mail to the senior leaders at the FDA (Margaret Hamburg,margaret.hamburg@fda.hhs.gov; Patricia Keegan, patricia.keegan@fda.hhs.gov; Richard Pazdur, richard.pazdur@fda.hhs.gov; Janet Woodcock, janet.woodcock@fda.hhs.gov) and also send a copy of that letter to your congressman and senator. The mailing address for the FDA is 10903 New Hampshire Ave, Silver Spring, MD 20993-0002.

We need more choices in treatment not less.

May the FORCE be with you!

This knowledge saved my life - now I want to pass it along. Will you help me? I will be on a radio show Friday called How She Really Does It hosted by Koren Motekaitis talking about all this. Tune in at 10-11am PT on 95.7 FM or via live webstream directly from Koren's websitewww.howshereallydoesit.com. There is a button to click to listen to the podcast.

Force: Facing Our Risk of Cancer Empowered

Today FORCE begins an awareness campaign. Did you know that approximately 750,000 Americans are affected by hereditary breast and ovarian cancer. It is our goal for 1%, or 7,500 of our friends and family to join us on Facebook and help us spread the word about HBOC. We have 5,011 to go. Please suggest this page to your friends, share your stories and comments, and pass the word. We're grateful for your support.

Breast Cancer Awareness Body Painting Project - ArtStreet

What makes us happy?

If you live locally, come see what my husband the Psychologist and a Buddhist Monk have to say about being happy.

Help raise awareness of Hereditary Cancers

Sweet Followers of this here blog,

I haven't yet used this forum to advance any agenda so far (I know I also haven't used this blog to do too much of anything SO FAR), but this issue is urgent and extremely relevant to the awareness raising I do hope this blog will generate. If you are with me, please read on:

We need your help now! We need to have ALL co-sponsors on board by August 2nd. PLEASE email your representative today.

This week, FORCE joined Congresswoman Debbie Wasserman Schultz (D-FL) to introduce HR#1522 – legislation to establish Hereditary Breast and Ovarian Cancer (HBOC) Week.

The legislation calls for designating the last week of September as “National Hereditary Breast and Ovarian Cancer Week” and Wednesday of that week as “National Previvor Day.” HBOC Week and Previvor Day will raise awareness of hereditary cancer, leading to more education, research and resources. Knowledge of a genetic predisposition to cancer, available risk management and treatment options can save lives!

We need your help now! At least 100 co-sponsors are needed to pass the bill.

Let your House Representative know that HR#1522 is critical in the fight against hereditary cancer.

You may be asking: “How can I help?”

The answer is: Very easily! All you have to do is copy & paste what’s already written and it can all be done online in about 5 minutes!

1. Find your House Representative by going to this link: http://www.facebook.com/l/1abebKw-WyjTWcx-ZtJ56cC5KQA;https://writerep.house.gov/writerep/welcome.shtml

2. Copy, paste and send the e-mail below.

Dear Representative____(delete this & put in your Rep’s name)_:

I am writing to urge you to sign on as a co-sponsor of the legislation to establish Hereditary Breast and Ovarian Cancer Week, HR#1522, introduced by Congresswoman Debbie Wasserman Schultz (D-FL).

The legislation calls for designating the last week of September as “National Hereditary Breast and Ovarian Cancer Week” and Wednesday of that week as “National Previvor Day.”

HBOC Week and Previvor Day will raise awareness of hereditary cancer, leading to more education, research and resources. Knowledge of a genetic predisposition to cancer, available risk management and treatment options can save lives!

—You may wish to insert a statement on the personal impact. Personal notes make your correspondence more meaningful. If you insert a personal statement, keep it short (no more then 3-4 lines. Sample: I carry the BRCA1 mutation. I lost my Grandmother, Mother and Aunt to this disease before we knew anything about BRCA and it’s effects. The knowledge I gained about this disease allowed me to take steps that have significantly reduced my risk. I want to make sure ALL women (and men) have that knowledge.—

If you are willing to co-sponsor this bill, please contact Coby Dolan (Coby.Dolan@mail.house.gov) or Danielle Gilbert (Danielle.Gilbert@mail.house.gov) at Congresswoman Wasserman Schultz’s office.

Thank you for your support.

Sincerely,

Full Name
Address (Including City and State)

_______________________________________

Thanks so much for your time!

I'm a Previvor

"What's a Previvor?" some of you may ask. Two years ago I was one, but I didn't know myself.

It was my genetic counselor Maude who first introduced me to the word.

I felt like I was being inducted into a club that I didn’t really want to join but at the same time I was curious to know more about. Over the ensuing months, as my genetic test results came back positive for the BRCA genetic mutation, putting me at advanced risk for both breast and ovarian cancers, FORCE became a regular fixture in my life. I regularly visited the website and various postings to learn about the different options for surveillance, surgery, and surgeons. I met other BRCA+ women through the site and a local support group organized by FORCE, and even raised funds for the organization during my first half marathon. Those five letters represented a lifesaver, in the midst of relatively uncharted waters.

So why tell you all this now. FORCE is one of several organizations taking part in the CHASE Community Giving Campaign that is giving away a total of $5 million dollars to split between 200 charities. All you have to do is vote for FORCE through Facebook and you could affect the lives of thousands of women like me - many of whom don't even know that there is a gentic test out there that can save thier lives. Thanks so much for reading this far, now get to the end and don't forget to vote!

A little bit about FORCE and the CHASE Community Giving Campaign (from Teri Smija):

FORCE is the only national nonprofit organization dedicated to serving the needs of and improving the lives of individuals and families affected by hereditary breast and ovarian cancer. They provide lifesaving information on the latest medical treatment and risk management, resources, and awareness.

Voting on Facebook starts on June 15, 2010 and the lucky 200 winning charities will be announced on July 13, 2010.

What would FORCE do with the money if they won?

For starters:

• $1,000 delivers the latest in BRCA research and information to 500 families.
• $500 gives 60,000 visitors access to their website for one month.
• $300 provides a scholarship to FORCE’s annual conference to one person that could not otherwise attend.
• $200 provides life-saving information to 100 people through their newsletter.
• $100 provides phone-based support and resources via the Helpline for one month.
• $50 provides a package of informational brochures to doctor’s offices and hospitals.

Just think – if $2250 can do all of that – how much good could be done even if we only place among the bottom 195, and win the lowest amount of $20,000! That’s a whole lot of help, to a whole lot of people!

The scar I picked

Scarred

I have been working on a piece on scars and tattoosfor a while but it isn’t coming along. I'm stuck in the "it has to be perfect before sharing" place.

My experience since starting this blog has been similar. I feel crippled (pun intended!) to create posts unless I have whittled and edited them to some kind of non-existent perfection. In my head I know that this defeats the idea of a blog, but still the idea has caused me to remain mute here in this space.

And then I read this poem, by Lucille Clifton that really captured my emotions around these lines on my body and also about how I want to share my experience with others.

scar

we will learn

to live together.

i will call you

ribbon of hunger

and desire

empty pocket flap

edge of before and after

and you

what will you call me?

woman I ride

who cannot throw me

and I will not fall off.

I realize that in many ways, this is what my scars represent, they are the lines of my story. They are not flaws on my body, but rather a map of where I have been, and where I hope to be going. The challenges and roadblocks, opportunities and life experiences that have shaped who I am, are the very fabric of the scars I wear, both physically and spiritually.

So here’s the physical story from the top to the bottom:

• Each breast is partially outlined in the shape of an Eye of Horus. I believe this ancient Egyptian symbol of protection is watching over my wellbeing and future health.
• Under each arm, two red, raised, dots from the drains that ran from my body after each breast surgery. These smallest of scars healed the worst.
• A flaming rainbow over my bellybutton (which was not the bellybutton I started out with).
• A large smile from hip to hip where my stomach used to be.
• A sad face on my thumb from where my ski crashed into me during my skiing accident.
• And the latest and largest scar that I have, a hook shaped scar along my entire lower right leg where the metal plate and 15 screws were placed to hold my bones together.

So now, use the comment space to tell me about your scars...

screwed!

For those who have been wondering what 14 screws and a metal plate looks like....
Wondering what airport security is going to do with me now.

Birth of a Blog

I have hemmed and hawed over blogging or not blogging for a while now. I even posted a query on Facebook to see if anyone would "Follow" me if I did. First and foremost there is the "Why would anyone care what I have to say?" feeling at the gut of the issue. Second is the concern over the time that blogging would take away from the "real" writing I am trying to do to get my memoir written. Then, the other night on g-chat, my good friend Michelle Citrin (a.k.a "Matza Girl" in our family) suggested I do some blogging. “So people can check you out,” she typed. “You can build a following and a web presence.”

Michelle has always been a muse of mine for letting my creative side fly. She is an innovator and an artist. She told me about a networking site called “Friendster” long before Facebook came into vogue. Michelle is the one who envisioned me dancing onto the stage of the Ellen Show to announce the publication of my book. As a musician Michelle has created her own successes from the first show I saw her play at a Border’s store in Fairlawn, New Jersey. Now she gigs all over New York and travels to play in places like Israel and California. Michelle has been named a “YouTube Sensation” and most recently got hired to create a soundtrack for the Broadway version of “Sleepless in Seattle.” So, if Michelle suggests a way to get my work out to the world, I listen. She is a person to follow and to get the pleasure of knowing. Check out this link to see her in action and understand why she got the nickname from our family: http://matzahsong.com

The same idea was suggested in the "Writer's Digest" I just finished reading. There was an article on how blogs are the way a lot of current writers have gotten their audience. Another talked about using the web as a way to self publish and sell other products just based on social networks. Word-of-mouth is the way to go in today’s world, and connections are what it is all about. With today's communication and social networking systems, you can have direct contact with hundreds of people daily. With a blog you get the instant gratification of hitting “Publish” every time.

I take this new opportunity as another sign from breaking my leg. It is imperative that I derive some meaning from this challenge; otherwise I wouldn't leave the couch and the Today Show for three months. But, I am not that kind of person. I mean, if you are EVER going to start a blog and a regular writing practice, the three months you have to just sit and heal provide the perfect chance. I can’t do a lot of the things that I love to do or that help pay the bills, so why not write? I've made a lot of wishes for time to write my memoir. Be careful what you ask for, right?

My best friend from High School, Leah Levin, dubbed me the "hub" at one point to describe my social stature in our group of friends. She relied on me to connect her with other folks in our community, to tell her about what was going on, and explain how people were related to each other. During my surgeries this past year I relied more than ever on this community or "security hammock" as I like to describe it. There were people and resources buoying me up with each crashing wave.

“I can’t believe how fortunate I am,” I would say over and over again.

And the response was consistent, some iteration of "You made this for yourself." I try to take that in and believe it. Still I give thanks for all the ways I have been held up through all of this. I would do the same for others if I could. I have given of myself and made myself available to people in a way that they are happy to give back. Or, they know that if they ever needed something I would be there if I could.

This blog is the convergence of these two things. The deep love and appreciation I have for community being the very vehicle to get my words and stories out to the world. You are the ones who have read this far along in this post. Namaste.

The Breast Reason To Blog

The most transformational years of my life have been during this last decade. There were the blessings of getting married and becoming a mother. And there was a lot of loss: My mother, father, and sister all died within six years of each other. My mother and my sister were both breast cancer survivors for years before it took their lives. Due to this, I lived this last decade with a pink breast cancer target on my chest, waiting for my time to come.

Last year I tested positive for the BRCA2 gene that gives me an 87 percent likelihood of having breast cancer in my lifetime. Most of these cases are also marked by early onset in the 30s and a strong likelihood of ovarian cancer to boot). Suddenly, instead of being an observer and care-giver of cancer, and a pink-ribbon event and fundraising guru, the story was now my own. I decided to take action to change my genetic predisposition for cancer and have a prophylactic bilateral mastectomy and reconstruction.

When I went into all this last year I had two natural breasts that had served me well from puberty through breast feeding both my daughters. Surgery Number 1 took my original boobies and in eight hours on the operating table made two new mounds from my stomach (known as a DIEP flap). I elected to take the minuscule chance of cancer coming in the nipple to have skin and nipple sparing surgery, hoping for the most natural looking result possible. All seemed well enough for a little while, but things didn’t heal even after a few months. Surgeries 2 through 4 became necessary when a MRSA virus wiped out my new left breast and a subsequent tissue expander that had been placed in my chest to make space for an implant when the natural tissue breast failed. What remained after that was my worst fear, no breast on the left side, or what my husband so aptly dubbed “the flopped soufflé.”

I spent the next few months on various antibiotics, wearing a plastic prosthetic boob that, above all else, will offer me some very funny and painful stories over the year. In November I had a new tissue expander put in my chest (Surgery 5 if you are counting). The following three months were spent getting “filled” each week with about two tablespoons of fluid until my left breast ballooned up to match my right breast. After Surgery 6 to take out the expander and place my new implant, I was back to a new kind of new. Again with two breasts, plus a bunch of scars, some silicone, and an asymmetric silhouette.

These stories feel meant to be shared, and this compels me to write and blog. The current working name of my memoir is Life in Asymmetry.