Dragonfly

I haven't come back to post on this blog since December of last year. Look at the month now, late August, almost September. But when I read the email that inspired this post, I could think of nothing other but opening another tab on my desktop, entering this site, logging in, and starting to write.

Not that there haven't been things I thought about writing about, other events of significance or import. But there were other projects and places that were occupying my attention, and the blog was quiet.

But this email seems intended to be put here, right now, even though I am not sure of its ultimate significance.

A few of my other writing pieces have me waxing on about the meaning of relationships, the friend who I am most suprised to have. Another contest asks when I first learned the meaning of love. These questions, and the ones I ask in my book always lead me back to the Big ? What the heck is life all about anyway?

The main conclusion I come to most of the time is hope. Believing in it, having it, living for it. I mean why else live unless you can imagine a likelihood of success and believe in possibilities?

The email that I got somehow seems to represent both the questions and the answers in one simple picture. It is from Caryn in MI who I have only really known for the equivalent of one day.

I had seen her in the hallways and showroom of the conference we were both attending, but we hadn't connected until the last day when we talked at a boot camp class in one of the ballrooms.

"I like your funky moves," I said to her bobs and weaves, little kicks, and great expressions as we went through the workout. “Thanks,” she said, looking like a sweaty Sarah Silverman. She gave a sideways smile and I could tell she liked that I said it. We talked a bit more in class between power intervals and then chatted after with a few other women leaving the class and heading for the elevators to shower.

Later that night a group of us met up at the pool party and Caryn was there. She was preoccupied because she really wanted to see the fireworks from the top of the building, but nobody wanted to go with her, until she asked me.

I never miss an opportunity to see fireworks. It reminds me of my mom, and of sweet times, and always pulls "ohhs" and "ahhs" of wonderment out of me at any age.

We went to the 54th floor of the hotel and watched the distant fireworks of Epcot center through the glass as we told each other the stories of why we were at the conference.

Caryn's mom died at 44, when she was only 14. Caryn's mom was one of four sisters. Three of them, including her, died from breast cancer. Caryn tested positive for the BRCA gene and she wanted to do something to stop a similar fate. So she joined FORCE at was at the conference to learn more.

Caryn's mother Irene (LowerLeft) and her sisters: Pat, Joan and Barb Unpictured is Joyce, who died of bone cancer at 18

I told Caryn my BRCA story and about losing my sister and mother to breast cancer. We talked about breasts and surgeries and loss, about our children, and our husbands and our sex lives, all in the space of under an hour while the not so spectacular fireworks shot up and fizzled in the background.

After an only fair grand finale we went back to the pool party for a bit and then said good-bye. Caryn left the next morning while I was enjoying a rare chance to sleep in. She stuck a card under my hotel room door that gave me the dates and fundraising information for her upcoming 3-Day Breast Cancer walk. I made a donation the next day before she even got back home, and we emailed twice over the months between.

Last week, when Caryn was about to leave for her walk, she sent me an email saying said she would be thinking of me and my loved ones as she walked.

"Walk with wings," I emailed back.

When I opened the email I am going to share with you now, I broke down crying. Instantly hit, smack dab in the heart, with a huge helping of hope and appreciation and love. And it got me blogging.

Thanks Caryn, the inspiration keeps going round and round. We should never forget that it is not about time spent with people, but the quality and connection that makes all the difference.

I walked w/ wings!

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Caryn to me

show details 8:14 PM (3 hours ago)

Hi Raychel,

This beautiful dragonfly was resting on my tent the last morning. I put him gently on my shoulder- he stayed there for 20 min! So I walked with wings afterall. Hope you are well.





Caryn

photo.JPG 197K View Download

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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 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.