ACT WITH LOVE!

In two days, the first day of "Pinktober" will have arrived. Again.

Rather than rehash my feelings about the pinkification of breast cancer (read that October 1, 2011 post here), let's act with love and make history together by signing up for the HOW (Health of Women) study...

JEN "JELEBELLE" VENNES

(Copyright ©2013 Jennifer Ledda Vennes/Keep the Calm)

The breast cancer blogging community has lost another wonderful woman, wife, mother, blogger to the scourge that is breast cancer — Jen "jelebelle" Vennes. She was 39.

Jen penned the supremely well-written, super honest, often raw and always inspiring blog, KeepTheCalm. I'd been following her story since Spring 2012, when she first wrote about the chemo drug Navelbine (something her nurses jokingly referred to as "navy bean"), which was part of the trifecta of chemo drugs she was desperate to have work...

PINKTOBER PREPAREDNESS

With "Pinktober" right around the corner, I received this morning from Dr. Susan Love's "Act With Love" Research Foundation. Dr. Love understands the challenges, the politics and the need for greater research (vs. "awareness") with regard to breast cancer and is busy putting programs in place to not just raise research dollars, but to actually tap the people of the world so we can assist in the research itself. It's pretty impressive...

ACT WITH LOVE

Today is the first day of Pinktober. Rather than rehash my feelings about the pinkification of breast cancer (read my October 1st post from last year here for that), instead let's act with love and make history together by signing up for the HOW (Health of Women) study. 
What is HOW? It's an international online research study that will track thousands of people over time in an effort to determine not only what causes breast cancer, but how to prevent it.
Who is HOW? Dr. Susan Love's Research Foundation is behind this ground-breaking study.
Who is eligible? EVERYONE! It doesn't matter if...

CALLING ALL WOMEN!

A Duke University research team is currently looking for women who live anywhere in the U.S. and have undergone surgical treatment for any type or stage of breast cancer to participate in an Army of Women quality-of-life study.

THIS ONLINE SURVEY CAN BE COMPLETED FROM THE COMFORT OF YOUR HOME.

What could be easier than that?

THE REQUIREMENTS ARE SIMPLE

• You must live in the United States
• You have had a diagnosis of breast cancer at any stage — including DCIS, LCIS or Stage IV metastatic breast cancer
• You have had surgery to treat your breast cancer
• You are female
  
• You are 18 years of age or older
• You have access to a computer

HERE'S HOW TO PARTICIPATE

• Go to the Army of Women study requirements page (click here) and then click "Sign Me Up!" 
• If you are eligible, you will be sent an email with instructions on how to complete the survey online. The survey is completely confidential, and it asks some compelling questions about your experience post-surgery; I encourage you to be brutally honest! The medical community needs to know how utterly jarring and life-altering breast cancer surgery and reconstruction really is. Only then can things begin to change.

IMPORTANT!

Please tell any and all friends and family members who have had surgery for breast cancer about this study. It's one small way we can all make a difference! For more AOW studies, see my recent posts here and here.

MASCOT, MY MASCOT

It's Day 24 of the WEGO Health Activist Writer's Month Challenge. Yesterday's challenge was to write about anything I wanted. And I wanted to write about nothing. So that's what I did!

Today, however, the challenge is thus: "Give your health focus a mascot." I've been thinking about this since yesterday (knowing I was going to be writing about it today), and I had a few ideas, but the most poignant one I could come up with to represent breast cancer is something we actually all possess. It's different for each and every one of us. And yet it's the same. 

So what is it?

It's YOU. As a child. Little you, with a fresh face and creaseless skin and not a care in the world (other than having to stop playing in order to come in for dinner). It's the you that you were way before life's inequities entered the room. Before you realized that life was unfair, and difficult, and oh-so-messy. Well before you had to worry about everything yourself.

The age at which we were this innocent, this unscathed, this scarless varies by person, of course; but we all started out this way — protected from the reality of life and all that can go right and wrong.

Putting a face on my cancer means showing the world the innocence I once knew. That face is the essence of who I was then — but also who I still am now. I wrote some solid advice to my 16-year-old self on Day 10 of this challenge (read that here), and it can easily be applied to a child, any child, at any age. Even the 2-year-old above.

If we view cancer through the eyes of a child (and not through the artificial prism of Pink that has covered breast cancer like, well, like a cancer) we can connect with the need and desire to protect our inner (and outer) child from a similar fate. 

Find a photo of a very young you and make it your mascot. Look in your eyes. What do you see? That's the essence of you. If you have kids, you'll see them in there too. (If you don't have kids, you will see other people's kids.) 

So how do we protect these innocent children from ever having to go through a cancer diagnosis themselves? We can start by being a part of the search for prevention, the search for a cure. Sign up with the Army of Women. You don't need to have breast cancer to join the force. You just need to be a woman. Because that is the one risk factor we all share.

HAPPY BLOGIVERSARY

A YEAR ALREADY?
One year ago this morning, I hit the "publish post" button for the first time, sending details of my breast cancer experience into the ethers of the internet. (Find that first post here.) My story was still unfolding; I was barely six months in, still numb (physically and figuratively), but knew I had to get my feelings out or I was gonna explode.

WHY I WRITE
Words were the electric avenue in which I was (and am) able to process this whole stupid, stupendous journey. Initially I didn't tell anyone (aside from Husband) that I was crafting this blog. I was afraid of people I "knew" knowing the contents of my brain. I wanted anonymity. Scant people in the "real" world know I even do this and of those, many don't seem to care. Fine by me.

MARIA STARTED IT

The idea to start a blog came as I was reading my new online friend Maria's blog. I felt like she was telling my story. Eventually I realized I had to tell my own. I had a plan — to unravel myself in chronological order so that my blog would eventually tell my tale in real time. Ah, but the blog (like life, and like cancer), had other plans. 

GRAVITATIONAL PULL

I raised the white flag and surrendered to the magic of the medium long ago. Now I write whatever bubbles to the surface, and sometimes I manage to fill you in on what I'm actually dealing with. But make no mistake — the blog calls the shots. It has a magical gravitational pull all its own. 

WHO'S OUT THERE
I've been rewarded with readers from all corners of the globe (47 countries and counting) — 99% of whom I only know through this delicious online world. You are an amazing, welcoming, embracing, creative, supportive and brilliant bunch. I thank you for spending even a moment of your precious time here with The Big C and Me. Hugs and kisses!

GETTING BLOGGY
Also populating the blogosphere (besides delightful readers) are delightful bloggers — scores and scores (and scores some more) of the bravest, wittiest, wisest and most wonderful folks I know. Dealing with all manner of life's struggles. Fighting the good fight, writing about it, sharing their darkest moments, uplifting us with their insight, forging a new path through a thick sea of pink, speaking up, speaking out, righting wrongs, making things right. This is the beauty of an online community I never knew existed before I got cancer.

THE DARK SIDE
Don't be mistaken — there is a very dark side to blogging. The deaths of so many I have come to know since I started writing 365 days ago has been nothing short of SHOCK.ING. People like Lynn and Cheryl and Rachel and Susan and Mary and Sofie. (You can read about some of these lovelies here and here and here.) I was not prepared for this aspect of blogging, but have since been shaken out of my blindingly naive and defensive tree. The reality is, by this time next year, the likelihood is high that more bloggers whom I faithfully follow and look up to and gain strength from will be gone. These are the facts, folks. Don't let it scare you away. Please read our journeys! Give us your support. Leave us a comment or two. We are all changed for the better in the process. And never, ever forget those who have gone before us. Instead, allow them to inspire you to speak out for what is right — and what needs to change.

TABLE OF CONTENTS
Throughout this past year, I've cobbled together lists of bloggers and organizations that matter to me. Not all are cancer-related (just as my life is not all about cancer). Here's a rundown of what you'll find on the left side of my blog:

• QUOTABLES Every two days I change this up, adding a new saying that is relevant to me. I hope to you too.
• RENN'S STORY Some background on me and my blogging philosophy.
• THE 'BIG C' LIBRARY Where all my posts live in perpetuity.
• POPULAR 'BIG C' POSTS Exactly that... the posts that garner the most views.
• BIG C'S FAVORITE 'BIG C' BLOGS This is where I keep a running list of my favorite blogs under the "cancer" umbrella. It is ever-growing, and covers a variety of cancers (not just breast). 
• WANT TO KNOW MORE? This is my Resource Central. Find support, studies and solid information — as well as opportunities to make a difference and have your voice be heard. 
• WE REMEMBER My least favorite — but the most important — heading. I hope this section never grows, but I know better. May we never forget them.
• THE 'BIG C' PANTRY My go-to cupboard for all things non-cancer related. Mostly food blogs here, but also a sprinkling of art, garden, farm, photography and decorating blogs too. 
• JUST CLICK THE BUTTON BELOW! Follow my blog. That way you won't forget where to find me!
• GET 'BIG C' UPDATES VIA EMAIL Enter your email addy and receive an alert anytime I post an update to my blog. What could be more exciting?
• 'BIG C' CHASERS My personal 'hit' parade.
• I'M A GRUMBLER Created by The Accidental Amazon, this badge is a snarky symbol that I am dedicated to "grumbling for the cure" and working towards change when it comes to raising awareness that donating dollars for breast cancer research directly to the folks doing the research makes infinitely more sense (and cents!) than buying pink anything where only a fraction of what you have just bought goes to an organization (usually Komen) that then only uses a fraction of that for research. And do you really need a pink jar of face cream full of parabens? We can do better. We have to. So spread the word. And don't worry — if you forget, I'll be blogging about this again. And again. And again.
• I'M IN THE ARMY NOW! If you (and all your friends) aren't yet a part of Dr. Susan Love's Army of Women, what are you waiting for? This all-volunteer "army" needs you! You don't even have to leave your computer to be part of the front lines of research. Learn more — sign up today! 

WANTED: YOU!

Periodically I comb through Dr. Susan Love's Army of Women current research projects to find a few broad-based studies that are easy for people to participate in. My goal is to entice you to get involved in one. (Or two!) Taking a simple online survey doesn't take much of your time, it doesn't cost a dime, and it has the potential to help a great many people.

Of course, you can also donate money to a respectable organization that is putting its dollars directly into breast cancer research — and lord knows we need that, too — but guess what all researchers need even more than moola?

Study participants! Women with breast cancer! People like you and me! Lots and lots of them!

There is power in them thar numbers. Put it to good use by checking out one of the studies below. (If you don't remember if you have participated in any of them before, no worries; just click on the Yes! Sign me up! button on each study page. If you get a "According to our records, you have already submitted an RSVP for that project. Thanks!" Well, then, thanks! 

(PS: KNOW SOMEONE WHO MAY QUALIFY FOR ONE OF THE STUDIES BELOW? PAY IT FORWARD AND FORWARD THIS POST. PLEASE!)

• Boston University's Phase 2 study of the Variations in Health Needs of BC Survivors needs 600 women within the U.S.A. to take part in a telephone survey. The research team will assess the health and well-being of women who have any of the following: recurrent breast cancer, metastatic breast cancer, a recent diagnosis of breast cancer, an additional invasive cancer diagnosis, or you are currently undergoing treatment. The information gathered from this study will be used to develop programs and services for women with breast cancer.
• UCLA's Latina Breast Cancer Initiative is looking for 150 Latina/Hispanic women in the U.S.A. who have been diagnosed with breast cancer for the first time — at any stage — within the past 12 months. This telephone survey is in English or Spanish (your choice) and will look at the psychological impact of breast cancer.
• Washington University School of Medicine's The Breast Cancer Risk in Young Women Study (which I first blogged about here) is looking for a total of 5,000 women across the U.S.A. and CANADA who were diagnosed with invasive breast cancer — at any stage — at age 40 or younger. It doesn't matter how old you are now. It also doesn't matter what stage of treatment you are currently in. All you need to do is submit a blood sample, which can be drawn at your next doctor's appointment. You will be sent a kit that includes shipping materials and all of the documentation your doctor requires to draw and ship your blood to the research staff. There will be no cost to you and you don't have to handle anything icky.
• The University of Louisville Brown Cancer Center's The Breast Cancer, Uterine Cancer, and YOU Study (which I first blogged about here) is an online survey for U.S.A. participants that looks at whether a woman who has been diagnosed with breast cancer at any age or stage (including LCIS and DCIS) is at higher risk for developing uterine cancer.

CALLING ALL U.S. BC PEEPS!

Here's a quick survey for any woman in the U.S. who has ever been diagnosed with breast cancer. This survey looks at the risk between breast and uterine cancers.

Props to Dr. Susan Love's Army of Women for the heads up about this study from the University of Louisville Brown Cancer Center. And if you aren't already an AOW member, register here; it's free, and there are lots of studies to peruse that you may be eligible for.

Your participation really can make a difference in the development of future treatments for women with breast and other cancers.

(Courtesy Army of Women)

HORMONE SURVEY

Calling all Arimidex, Aromasin, Femara and Tamoxifen takers! Dr. Susan Love's Army of Women needs YOU for a short online survey.

The requirements:
1) You are female
2) You have been diagnosed with breast cancer
3) You are currently taking (or have taken in the past 12 months) Arimidex, Aromasin, Femara or Tamoxifen
4) You live in the United States

The goal of this research study (a joint project of the University of California/Los Angeles and the Dana-Farber Cancer Institute in Boston) is to better understand your feelings, physical symptoms and behaviors as they relate to your taking endocrine therapy for breast cancer.

It is simple, takes little time (I completed it in 15 minutes), is anonymous, and a great way for your voice to be heard. Log on here for more information and to sign up to take the survey.

My thanks to fellow blogger (and Army of Women leader extraordinaire) AnneMarie over at chemo-brain.blogspot.com for the head's up about this survey!  ;-)

WANDA, CHRISTINA AND ME

One of the many benefits (OK, I threw in the word 'many' for affect) of having breast cancer is that I am thrust into a world I would never have been interested in before... the wonderful world of breast cancer bloggers. These women (and a few men) are fighting the good fight and writing about it every step of the way. They may not all be professional writers — but they could be. They are witty and wise wordsmiths; their blogs, a pleasure to read. The discourse that arises on the screen is often cutting edge, and unlike anything you are going to read anywhere else.

To wit: This morning I read a fabulous post by blogger Katherine over at ihatebreastcancer discussing the announcement by the amazing Wanda Sykes on Monday that she was diagnosed with DCIS (ductal carcinoma in situ). Wanda is one of the funniest comics out there, and this news is devastating.

Wanda talked about her breast cancer publicly for the first time on "The Ellen DeGeneres Show" and shared how her cancer was discovered — while undergoing breast reduction surgery, of all things. Though her cancer was caught early (Stage 0), she opted for bilateral mastectomy due to her family history; as Wanda explained, "Cancer is cancer." This is true. But then she went on to say the words that have the breast cancer blogosphere buzzing: "Because now I have zero chance of having breast cancer." And Ellen agreed. But that would not be true. (The zero chance part, that is.)

(Courtesy Warner Bros.)

I'm joining blogger Katherine in being "Cliff Clavin"-esque here because Wanda and Ellen's comments eerily remind me of Andrea Mitchell's comments earlier in September when Andrea was also diagnosed. Andrea stated, "This disease [breast cancer] can be completely curable if you find it at the right time."

Here's the real deal: Whether they have a lumpectomy — a la Andrea Mitchell and Sheryl Crow — or bilateral mastectomy like Wanda Sykes, Christina Applegate and me (gotta throw myself in here, since this is the only time I'll be able to mention my name along with theirs and have it make sense!), when people in the media say they are "cured," they do us all a grave (pardon the pun) disservice because it simply isn't factual. It just isn't true. And it gives people false hope — not just the patients that breast cancer afflicts, but the friends and family of BC'ers too. Catch breast cancer in its early stages and your chances of staying cancer-free are certainly high — but they are never 100%. Ever.

What Wanda, Christina and I (and so many of my BC buddies) bravely did by getting bilateral mastectomies (though our cancers were found in just one breast) is still considered controversial. But that is not the point of this post.

Instead, I want to address the issue of why public figures feel the need to downplay a cancer diagnosis.

I'm pretty sure I know why they do it: Because they are afraid they won't be hired again unless they say they are "cured."

Would it be better if Wanda had said, "Yes, I found my breast cancer early and yes, I had both my breasts removed and yes, my cancer can still come back at any time and kill me"? Abso-f-ing-lutely.

But I also understand why she didn't say that. Part of it is the natural desire we all have to believe we are cured. I get that. But the other part is just as important: She has to worry about her (and her family's) financial future. Just as we all do. Just as we all don't walk straight into our bosses offices and announce that yes, we have breast cancer and yes, we might die. Because if we did, we probably wouldn't be getting that next promotion. That next opportunity. That next big gig. And so we downplay. To ease others' fears — and to ease our own.

It's a gnarly little line that people in the public eye must walk in order to save face. And we already know which side they are gonna take. The side they must: They have to save themselves first. After all (and this isn't the first time I have said this and it certainly won't be the last): They are only human. And trying to keep everything as normal as possible for as long as possible. (Can anyone relate?)

So I'm gonna cut Wanda a wide swath of slack. But I'm also gonna make sure I talk about all this. It is up to us (the "foot soldiers," as the Army of Women calls us) to get the word out and not be under any illusions that bilateral mastectomy is "the cure." Not trying to be a Debbie Downer here; just Renn the Realist.

Maybe at some point down the line, a high-profile personality will pick up a bullhorn when they are first diagnosed with cancer and tell it like it really is. But until that day happens, I'm not gonna hold my breath. I'm just gonna blog about it.

ARMY OF WOMEN

Thanks to Dr. Susan Love's Research Foundation and the amazing Army of Women, there are oodles of ongoing opportunities to participate in cutting-edge research. I'm highlighting a few noninvasive studies for you to consider participating in if you meet eligibility requirements. There is even one listed here for ladies who don't have cancer. Click the links below for more details. (These studies are time-sensitive, so if interested, get in touch right away. If they're not right for you but for someone you know: share, share, share!) 

DCIS AND BRCA STUDY If you've been diagnosed with DCIS, have a known BRCA mutation, and are over age 20, this research study may be for you. The best part: They are recruiting women from all over the world. 

ENERGY STUDY The "Exercise and Nutrition to Enhance Recovery and Good Health for You" (ENERGY) study will analyze the effects of diet and exercise on overweight breast cancer survivors. Women must live near the following locations: San Diego, CA; St. Louis, MO; Birmingham, AL; and Denver, CO. 
HOT FLASH STUDY The "Interventions for Relief of Menopausal Symptoms: A 3-by-2 Factorial Design Examining Yoga, Exercise, and Omega-3 Supplementation" study needs women near Seattle, WA — cancer NOT required! — who are between the ages of 40 and 62, peri- or postmenopausal, suffer from hot flashes and not on Tamoxifen or other hormone treatment.

JEWELS IN OUR GENES STUDY aims to understand if there are undiscovered genes unique to African Americans that may predict early breast cancer risk. The "Jewels in Our Genes" study is looking for black women over age 18 who have been diagnosed with breast cancer and reside anywhere in the USA. 

MEDITATION STUDY If you live near Los Angeles, CA, and were diagnosed with breast cancer after 2001 but before age 50, you may be eligible to participate in a "Mindfulness Meditation-Based Intervention for Younger Breast Cancer Survivors" study.

YOGA STUDY The "Yoga for Breast Cancer Survivors: Effects on Fatigue, Immune Function, and Mood" study needs ladies who live near Columbus, OH, for a research project studying the effects of yoga on (you guessed it) fatigue, immune function and mood.
YOUNG BREAST CANCER STUDY The purpose of the "Breast Cancer Risk in Young Women" study is to learn what role genetic factors may play in the development of breast cancer in younger women. Currently recruiting 5,000 females diagnosed with invasive breast cancer at age 40 or younger who live anywhere in Canada or the United States.

(© Army of Women )