Lots to Talk About...Lulumon, Turn Up the Heat, etc.)

Hello loyal followers. I can't call you readers because, well, I haven't written anything to be read ;-) Several times over the last month I have wanted to jump on here and spew my thoughts, but life, as usual, got in the way. So, here is a back log of my ponderings.....

1. Ovarian National Alliance Turn Up the Heat Event-

"The Ovarian Cancer National Alliance is proud to present the 9th Annual Turn Up the Heat! A Celebration of Women Chefs Gala on February 19, 2014, at our new venue -the Ronald Reagan Building and International Trade Center.

Join more than 400 guests for the food event of the season while raising important funds to fight ovarian cancer! You'll have the chance to mingle with nearly 50 women chefs, restaurant owners and mixologists Click here to purchase tickets or explore the links to discover more."

2. Lulumon and stupidity-
Firstly, I really am trying to be less critical and skeptical of people and at minimum, stop making faces and comments to indicate that I am currently judging and criticizing. However, when anyone makes a statement like the one quote below, I'm sorry, it is no longer within my will power to fight my belief that you are absolutely ridiculous.

Except taken from Chip Wilson's blog post from 2009:

"Breast cancer also came into prominence in the 1990's. I suggest this was due to the number of cigarette-smoking Power Women who were on the pill (initial concentrations of hormones in the pill were very high) and taking on the stress previously left to men in the working world."

Another statements that will be referenced below:

"Quite frankly, some women’s bodies just actually don’t work,” “It’s about the rubbing through the thighs,” and “how much pressure is there.”

WHAT? There are too many leaps in logic in these two sentences for me to adequately address all of them adequately. So, let me just say this; Chip Wilson, you make absurdly expensive women's clothing, yet you are not a woman. You make ludicrous statements about the shape of women's bodies yet you do not have a woman's body. You then make asinine statements about breast cancer, yet you are not medically trained, nor are you a Power Woman. So let me say this as I feel I am ALL of these; women, thigh rubbing and powerful; shut up. You demand too much money for a product you say does work for almost nearly every woman and then you spew inaccuracies and victim blaming statements about women with breast cancer. Shut up.

Get P. INK'd

P.INK Day 2014 wants you! E-mail help@p-ink.org

 

 

Every Voice Matters

From the University of South Carolina School of Medicine Genetic Counselibg Program:

Help future young, high-risk individuals like me and you by participating in a research study! We would love to hear your story! We are looking for women or men under the age of 25 who have undergone genetic testing and know that they carry a BRCA1 or BRCA2 gene mutation to take our online survey! For more details and information or to participate in our research please click here:http://www.surveymonkey.com/s/8HQNVDD

Angelina Jolie Previvor Montage

I stole this montage from a blog called: http://www.helloeverydaylife.com

The video has a lot of great questions regarding BRCA and prophylactic surgery stemming from Angelina's announcement.  I wish the clip included the doctor referenced in the third segment. Again, I'll look for it and update once I'm off mobile.

 

Also stolen from Hello Everyday Life, this graphic on BRCA, who's at risk, what's the risk and general statistics. 

P.INK Day 2013

I just got back from New York City (first trip ever), and I am on a high of positive energy and have a renewed sense of "fight" for the cause. This trip was mind blowing in so many ways. I met amazing women from advocates, to survivors to artists. Everyone gave something to make the weekend as amazing as possible for the participants and the coordinators.

We arrived Sunday night to our hotel. It was crazy driving through the city, through tunnels and across bridges, dodging bikers and pedestrians. It was something I had never seen before. Once we arrived, we got ready for a pre-event reception in lower Manhattan. There I met the P.INK team as well as tattoo artists and fellow survivor participants. Right away the energy in the room was hopeful and excited. We were all so very grateful for each other and listened adoringly to each story as we had a chance to meet and connect. As we said our goodbyes I was overwhelmed with excitement that I had a hard time sleeping.

Monday morning, we all gathered outside of Saved Tattoo in Brooklyn. Saved Tattoo graciously allowed P.INK to use their space and invite guest artists to complete 10 mastectomy tattoos for the first P.INK Day. Stephanie Tomez is a part owner of Saved Tattoo and she, along with other artists of Saved Tattoo participated in marathon tattooing. Some women were there for more than 8 hours of tattooing. That is nothing short of miraculous and fierce for not only the woman being tattooed, but also the tattoo artist.

My artist, Joy Rumore, is from Twelve 28 Tattoo around the corner from Saved Tattoo. She single handedly owns Twelve 28 Tattoo and has a connection with the cause. She herself had a cancer scare herself at 19 and lost loved ones to the disease. We connected immediately on these points and our silly witty personalities. I was tattooed for 3-4 hours and we laughed the entire time. I am honored to say that Joy is a truly beautiful person inside and out and I look forward to a forever friendship and bond from this experience with her.

After we were all tattooed and refreshed, we met for a post reception at a local bar/restaurant. There we talked about the day and exchanged thank yous to the organizers. We got to further meet and talk to Mollie the inspiration behind the entire project (see Mollie's story here). There I was asked an interesting question. What makes a mastectomy tattoo different than any other tattoo? I'll get back to this answer later, because it is a provocative question.

The next day, Tuesday, I was asked to participate in an interview with HuffLive about my experiences with P.INK and P.INK Day 2013. Of course I said yes! While in the "Green Room" (which is not green at all), I rubbed elbows with a super cute TV star, Tyler Blackburn of Pretty Little Liars and Ravenswood. 

After taking pics and drinking yummy coffee drinks, I was on set talking about my mom, my story and P.INK Day 2013.  You can see the full conversation here .  Huffington Post also wrote up a short article about my personal story with BRCA and my mom, as well as clipped just my speaking parts. You can see both the article and the short clip here.

The interview was an amazing experience. I was apprehensive at first being a teacher. I wasn't sure if I would have negative backlash for talking about a sensitive issue so publically. But, after much antagonizing thought, I decided that I am not doing anything wrong, ugly or perverse, so I have nothing to hide or be ashamed of. I dare anyone to say otherwise. Go on, I dare you! (haha)


The experience I had with P.INK cannot be categorized with words. I didn't realize what I was being given and I cannot find the words to adequately express my gratitude, and pride for this organization. I hope to help in any way I can for the future of P.INK and for survivors and women everywhere.

Please consider donating to P.INK 2013 and to future events. 

I donated...

And you should too!

http://www.indiegogo.com/projects/p-ink-day-2013

 

 

P.INK Day 2013

I have amazing news that both elates me and humbles me.  I haven't written in far too long.  I even had thoughts, once, about not writing again.  Life is chaotic at this point and I often find myself feeling like I am drowning in "stuff".  My hormones were off for quite awhile due to a pharmacy mix-up and I have been struggling heavily with insomnia.  The hormones are finally leveling out and I am starting to feel better and sleep better.  But after today and the connect I made because of this blog, and the opportunity I have, I am humbled that I was about to give up.  Thank you "J" for that renewed sense of needing to do something.

An organization called Personal Ink, P.INK, contacted me to an effort to find 10 women with mastectomy scars to participate in their P.INK Day 2013.  I am thrilled to be part of this campaign as I can't even express with words the discomfort of looking different.  This campaign is giving 10 women the chance to have their scars turned into art, their experience turned into beauty and their stories turned into tales of strength, survival and courage.

Here is more about the P.INK campaign, and Molly, the woman that started it all.  Support P.INK, Molly and me, as well as 9 other women, in this amazing event.  Give a woman a lifetime of confidence.

National Wear Teal Day 2013

 

Friday, September 6, 2013

 

Teal is the color of ovarian cancer awareness. On the first Friday in September, we ask you to wear teal to show your support for women whose lives have been touched by this deadly disease. Taking part is easy! RSVP on the "Wear Teal Day 2013" Facebook page to pledge that you will wear teal for ovarian cancer. On September 6, don your best teal, take a photo, and post in on your favorite social media sites using the hashtag #WearTeal. Help us spread the word by sharing this event with your Facebook friends. We'll compile your best teal photos and share them throughout the month of September, which is National Ovarian Cancer Awareness Month. Learn more about ovarian cancer at http://www.ovariancancer.org/

New year = New Challenges

I have been thinking for a while about doing a triathlon.  If you know me it will not surprise you that I signed up for 2.  LOL.  Why do anything just once.  Dive right in and go for it.  I have my first sprint tri on Sept. 29th.  It is a women's triathlon for the local YMCA.  A sprint tri is a 300 meter swim (in a pool), 10 mile bike ride and 3.2 mile run.  I think I got this.  I am not going for "good" or "fast" just finish!

The second triathlon is just a week later and it is an Olympic Distance Triathlon.  This is a bit more, um, crazy.  It s 40 total miles; .9 mile swim (open water), 32 mile bike and 6.5 mile run.  This race supports the Ulman Cancer Fund for Young Adults.  Basically Ulman Fund is a special fund to help people who are in their teens, twenties and thirties to fight cancer. 

If you are able, I would love it if you could support me in this.  I love swimming, biking and running for something.  It keeps me honest and accountable to my own health.  Here is the link to my fundraising page: http://halffulltriathlon.com/donations/?kwoAdvocateId=72OSHP2  I'll also have the donation form on this page on the sidebar and in the advocacy section of this blog.  Thank you!

Score for Humanity

The supreme court today announced that you cannot by law patent DNA!  Well color me happy!  We are well on our way to making the BRCA genetic mutation test available to everyone!

Score one for humanity, Myriad= 0

Read all about it here: Court says human genes cannot be patented

New Challenges

To this point, I have felt very pleased with my decision regarding my surgery and I have been extremely open about it.  However, I find myself in a new challenging position.  In this situation, I feel embarrassed, uncomfortable and modest. 

The locker room.  I am now coaching swimming at the local YMCA and with that employment, I get a family membership.  I decided Friday that I was going to take a mid-day class and shower there to be ready for a formal celebration afterwards.  Everything was all fine and dandy until I had to shower in a large room with a bunch of naked women.  As a former swimmer, this would not phase me in the least; until now.  Sans areolas (funny, spell check doesn't recognize this as a word), I clearly look different.  I get noticeable stares.  I find myself rushing and covering and cowering to hide my scars.  I find myself embarrassed.  Not ashamed, but definitely uncomfortable and not open to discussing my surgery with strangers while naked. 

For the first time in 2 year, the 2 years since my surgery, this situation has me baffled.  How do you deal with this?  The obvious answer is getting nipple tattoos.  But I don't want that.  I want a mastectomy tattoo, and I have one scheduled, but in the meantime.  How would you feel if you saw someone without nipples in a locker room?

Money Talks; Cancer Research Suffers

Susan G. Komen announced today that they are cutting the 3-Day Walk event in seven cities!  7 Cities!  That's nearly a million dollars worth of money to cancer research and countless amounts of awareness lost.

This article relates the decline in participation and lack of fundraising potentially to the controversy last year with SGK and Planned Parenthood: Komen breast cancer charity cancels walks in seven U.S. cities

I urge anyone reading this blog, or others, to put aside political opinions, religious "laws" and personal reactions to SGK and Planned Parenthood to see the "real" loser in this battle.  The real loser is cancer patients and survivors.  People are reluctant to donate to SGK and SGK events because SGK supports Planned Parenthood and on the other side are reluctant to support SGK because they broke partnership with Planned Parenthood.  It's a lose lose for SGK.  But again, who is the real loser?  All the women that SGK supports and touches with their power, reach and funding. 

As a former 3-Day walk participant, 3 times over, and raising nearly $10,000 single handedly, I can say that I have done my research.  SGK gives around 80% of funds raised to research and advocacy.  80%!  They aren't paying secretaries, or breaking even on event costs.  They are putting money where it needs to be. 

I urge you to find other ways to express your political/religious opinions that doesn't include punishing cancer patients and women.  I know that is a lot to ask.  I hate to say it, but not funding programs from SGK because of Planned Parenthood (whether for or against) is misguided.  It's not having the intended impact desired, and instead is harming women across the country and the world.  Think about it.  Cancer doesn't discriminate.  It strikes all races, religions, political party members and genders alike.  Fighting cancer with politics and religion is ineffective.  Cancer, I assure you, doesn't care. 

Memorial Day

My Yiayia (Greek for Gandmother) used to tell me that she visited my Pappoús (Greek for Grandfather) every Memorial Day.  He was a WWII vet who was given a letter of commendation for saving his captain's life.  He died shortly after I was born, so I don't know him, but everyone just loved him. They said he was funny and kind. 

For the last four years, my Yiayia and my mother are barried next to my Pappoús.  So visiting this Memorial Day was an emotional ball.  I hate driving there, but I love being there.  It's like writing an e-mail or text.  You can't see the other side of the conversation, but you know they are there; if that makes sense.  I just feel whole, like a family again.

My aunt plants flowers every Memorial Day around the family headstone.  This year my children and their cousins (my brother's children) were there to help.  I remember planting flowers every spring with my mother.  I remember my grandmother's affinity to the rose bushes we had on the side of our house.  She was come in bloody from the thorns, but she loved to prune and trim and clip bouquets. 

It was a nice few hours to spend with everyone talking and laughing and just being together again.

Relay for Life 2013- Luminarias

These brave women who lost their fights with cancer paved a path for me and others to become empowered to make better choices and gain knowledge of our own risks.  These involuntary martyrs saved so many lives.

By law, it's covered!

As I sift through the Angelina Jolie post, articles and news bits, I see this recurring attitude that somehow Angelina being rich made it possible for her to have corrective surgery.  This is SO not the case.

Based on Women's Health and Cancer Rights Act of 1998 (WHCRA), all insurance plans that cover mastectomy also cover related medical needs like reconstruction.  The U.S. Department of labor has a fabulous FAQ section on this very topic: Your Rights After A Mastectomy

If you have Medicare/Medicaid, the law doesn't cover you the same.  And in the BRCA situation, it might not cover reconstruction;  but that is determined by individual states.  According to Cancer.org;

"Do the WHCRA requirements apply to Medicare or Medicaid?

No. The law does not apply to Medicare and Medicaid.  Still, Medicare covers breast reconstruction if you had a mastectomy because of breast cancer. Medicaid coverage varies in each state, so you will have to get this information for your state."

I expected, at some point, a negative backlash on Angie, although I have to admit, I was hoping it was going to be all support and sunshine.  I felt however that I had to but this falsehood to rest.  Woman are protected well.  There is still work to be done, for sure, but BRCA carriers and women with breast cancer are not doomed to be un-womanly, or "mutilated" because of their economic status.  And Angelina's reconstruction has nothing to do with her wealth.  Actually, unless Hollywood now offers group insurance plans, I bet she did pay her surgeries out of pocket; where mine was covered completely. 

Another Sister

Angelina Jolie announced yesterday that she too carries the BRCA1 mutation and has had prophylactic surgery to remove both breasts. 

Cancer is blind, it does not see color, gender, wealth, intelligence, education, place in life or any discriminating factor.

Know your risk, and address it appropriately.

Article: Angelina Jolie Reveals She Had Preventative Double Mastectomy

I really like the way she explained her situation and decision in this article: My Medical Choice

It didn't happen often, but there were women, men, people that strongly disagreed with my choice to have prophylactic surgery.  Someone even said I "mutilated my body."  Despite overwhelming support from family and friends, there are always whispers that are heard a little louder, and comments that are taken a bit harder and stares that can make you feel tiny and ashamed.  I am glad Angelina is speaking out.  I love this blog, but she has the real power and captive audience to speak about what it's like to have BRCA and why it completely changes a person's life.

Race for the Cure DC 2013

The Race for the Cure DC was this morning and it was a great morning!  The weather held out nicely.  It wasn't too hot or too cold, although quite humid.  I had a great race coming in at 26.45!  That's a new personal record by officially nearly 3 minutes, but technically 1.5 minutes (I've had faster training times, since my last official 5k).  The event was awesome, the speakers were amazing, we were a force of pink ripping through the Mall.  I love our new Mother's Day tradition!  The race was followed by brunch and Georgetown Cupcakes....enough said.  Perfect day. 

Happy Mother's Day to all the mother of all kinds.  I miss mine everyday, every moment.  Another moment missed today when I crossed that finish line.  I know she was watching from heaven.

For every starting line;

and every finish line.

For every miles I run;

and every step I take;

you are with me, mom.

 

Pre-race, runner's start

Post race, face! (we don't even look winded)

World Ovarian Cancer Day

Share this graphic with the world!  May 8th!

Inspiration

We all need a little pick me up from time to time.  Here are two great stories about cancer, hope, love and fighting back!

1. This video was made by a few students at my school in honor of a student we lost to a brain tumor late last summer: (grr, Blogger won't let me embed this one)

http://www.youtube.com/watch?v=fe5GYjqLLX4

2. This is a great story about a young couple given the dreaded "deadline" and how the help of perfect strangers makes dreams come true!  Small world moments.

http://shine.yahoo.com/love-sex/bride-with-breast-cancer-has-dream-wedding--planned-by-the-internet-163234183.html

Happy Tuesday!

He's Still Going Strong!

Dave Brown who started walking last month across the country in an effort to raise awareness for Ovarian cancer is still walking strong!

Follow his progress, read his thoughts, and enjoy his journey through his blog found here.

Donate to his cause here!

GO DAVE!!!

Go Hillary!

Last year I had the privilege of meeting my Community Manager from the American Cancer Society for the Relay for Life I was chairing.  Her name is Hillary and she is an amazing cancer survivor.  Here is her story.  Listen to it, read it, share it.  She is awesome and I am so glad to call her a friend.

http://www.everydayhealth.com/cancer/hillary-gozigian-an-ovarian-and-endometrial-cancer-survivor-at-age-23-7012.aspx

I've Done It!

I made the appointment for my mastectomy tattoo consultation.  April 27th, 6pm!  Nervous!  Pictures to follow once the work is done (maybe, still concerned that pics might risk my teaching job).

Local Inspiration

It made my morning to hear about a local man walking in his late wife's honor to raise awareness for Ovarian Cancer.  He has walked miles with thousands more miles to go.  I wish I could join him on his crusade as it is my own.

You can read all about this amazing man here:
Man Walks to Raise Cancer Awareness

My challenge to all of my faithful readers and passer-byers: Do something this month to raise awareness.  Paint your nails teal, dye your hair, post  and share "silent symptoms" on FaceBook, join a race/walk, or donate to a charity the works for Ovarian Cancer Awareness. 

On March 1st  2009 my mother passed away from Ovarian Cancer.  I too want to honor her, her fight, and her impact on myself and this world.  Do something NOW.

Help Me!!

Friends: I'm trying to secure activities and entertainment for the Clarksburg Relay for Life May 18th. If you are a consultant, in a band or sell a skill (face painting, henna, massage) please message me ASAP! The American Cancer Society offers great incentives for in kind donations. Thanks!

Radio Spots- Relay For Life Radiothon

Here are the radio spot I did for Key 103 and 106.9 The Eagle for the Relay for Life Frederick County Radiothon!  Have a listen if you missed it live. 

I am so glad I did this despite being insanely nervous.  If even one person hears about BRCA and decides to get tested, or is motivated to advance their screening or have surgery, I have accomplished something.  #wontstopfighting

Bittersweet 4th Anniversary

This day is always a hard day for me.  I always want to share something profound yet I rarely can find the words to explain the significance of this day.  Four years ago, just after midnight, my mother succumbed to ovarian cancer and left this Earth. 

Growing up I couldn't appreciate my mother and the sacrifices she made.  I didn't understand the vast accomplishments she achieved and the strength she possessed.  I couldn't see how she was molding me to follow in her footsteps and those of other powerful, strong, independent women that came before us.  I couldn't see how all she wanted was for me to grasp the opportunities the other woman worked so hard to give to me.  My mother is the epitome of strength and courage.  I didn't appreciate the effort and energy she put into being a mother until I was a mother and she was almost gone.

There are so many times throughout the day I reach for the phone to call her, only to stop and realize that I can't.  All the questions mothers have, all the accomplishments and baby brags, all the venting and advice falls on ears in Heaven.  The days that hurt the most are the days I know she would be overjoyed to be present.  The days her grandson's were birthed, the days her granddaughters started Kindergarten.  The days her children graduated. 

At the end of everyday I wonder if I did something that I would be proud to share with my mother, and that she is proud of looking down on me.  I live for so many people.  I live for my children and my husband.  I live for my work and my involvement in cancer awareness and advocacy.  But I also live in a constant state of striving to make my mother proud.  It's infinite because she isn't here to tell me anymore, so I keep working each day to be a strong and powerful woman like she was.

Like all music there is a multitude of meanings.  This particular song always makes me think of my mother and the emotions I feel now that she is not longer with us.  There is a line in this song that states, "I held your hand through all of these years, but you still have all of me."  I feel like even though I was the caregiver, I was supposed to be the strong one, the one that held her up for all those years that she was sick, in reality, she was holding me up, and still does. 

This world is will never reach the potential it could without my mother in it.  It can't reach the potential it could without all souls lost to cancer and other premature death.  I will not stop fighting until I know that the people I love are safe from, at the very least, cancer.

Joanne Mehos Elliott 11/29/50-3/1/09

Four Years Ago Today....

I walked into my parent's house and my life changed forever.  Four years ago today, my mother lived her last moments. 

I was supposed to meet an old friend for coffee, but before I did that I wanted to drop off some groceries at my parents house.  My mom had been very sick for a couple months at this point and was unable to shop or do anything beyond necessities for survival.  She slept almost all day and wasn't eating.  My dad was by her side every minute.  My brother was coming to visit with his baby and I knew my mom would want food for them in the house.  When I walked in, however, I knew that this was the end. 

At first I left after unpacking the groceries to meet my friend.  I didn't want to admit that this was her last day with us.  But I knew in my heart that I needed to turn around.  I needed to be there with my mom.  I called my friend almost hysterical to tell her I wasn't going to make it for coffee. 

Four year ago today I spent that last day with my mother by her bedside.  I read her the newspaper and a People magazine.  I held her hand and tried to comfort her.  I assured her that my brother was on the way and she would get to see her granddaughters. 

I was so scared.  I knew this was the day, but I didn't want to accept it.  I knew these were the last words, the last touches, and the last opportunities we would have to be together.  But in my mind, I was fighting those certainties. 

I left before my mother actually passed away.  I told her I loved her and that I would be back at dawn the next day.  Sometimes I regret not being there, and other times I know that I couldn't have handled it.  But I also wonder if my mom was disappointed that I wasn't strong enough to stay. 

Four years ago today my life changed forever.  I lost my mother to Ovarian Cancer.

Relay for Life Radiothon

The Relay for Life of Frederick County does an annual radiothon with 106.9 The Eagle.  This year, as a very small and insignificant part of the committee, I was asked to come by and share my story on the radio! 

February 28th, tune in.  I'll be at Frederick Memorial Hospital talking live on the air (I think).  I'll try to get a more definite time, but I am thinking early evening after work. 

Please please please donate to ACS.  Its so important that we remain more persistent in our pursuit for a cure.  Donate here, or anywhere you feel called to do so. 

http://relay.acsevents.org/site/TR/RelayForLife/RFLCY13SA?team_id=1327014&pg=team&fr_id=53218

Genetic Testing for Children

This is a huge debate.  Should parents test their children for known genetic markers for various illnesses?  Should I test my two children, ages 5 and 3, for BRCA?  Is it beneficial to know sooner rather than later?  Is it taking away a person's rights to do with their body what they choose to test someone to young to make their own choice? 

TIME magazine debates this very topic in their latest issue.  Article- Click Here You will have to create a free account to read beyond the first couple paragraphs.

Genetic tests available include: Alzheimer's, Colon Cancer, Diabetes, Breast Cancer, Autism, Obesity and Early On-Set Alzheimer's. 

Would you test your child? 

We, Ray and I, chose not to test our children and stand firm behind that decision.  Here is our reasoning, it's not beneficial.  If one of our children has the BRCA mutation, the consequences will appear most likely much later in life, at least well after 18.  And if, in the rare event, they were diagnosed with a cancer related to the mutation before 18, we would not, and I would argue no doctor, would do prophylactic surgery or any preventative measures on a child under the age of 18.  I have actually hear of women under the age of 30 being turned down for prophylactic surgery.  Because of this, and secondarily, we believe in a woman's and man's right to choose and make decisions for their own body, we have opted not to test.  Rather, we will explain their risks and leave the decision in their hands when the time is right.  To each their own, as there are compelling arguments on all sides of this debate.  This is just own choice for our family and our circumstances.