Survivor Scientist Program, American Association of Cancer Research

As a Survivor Scientist, this will be my first time to create a poster about a topic and it is only fitting that it is on The Trifecta Effect.  When a group of scientifically-trained consumer advocates were lobbying in Texas for a better selection process to place advocates on CPRIT committees, we were looked at as if we were unicorns, or something that didn’t really exist.  One aide said, “You want the Trifecta!  Where are we going to find Scientifically-trained, consumer, advocates?” Well, now my goal with this years poster is to share a comprehensive list of educational opportunities available for consumers to broaden their knowledge base and training specifically launched through the breast cancer industry.  My aim is to inspire cancer consumers to avoid going back to their way of life, and continue gaining education so that their voices as scientifically-trained consumer advocates can continue affecting future generations in a collaborative and productive manner.  For me, I went back to school at Rice for one year studying Nonprofit Leadership and then became a Business Development and Community Outreach Consultant specializing in Breast Health Services.  I am thankful for everyone’s support over the past five years and amazed at how many incredible experiences I am able to share with others.  Thank you.

In addition, if you would like to help me get back to DC to lobby for Breast Cancer Research, along with others representing Texas, please click here to make a tax-deductible donation before April 17th.  Thank you!:  NBCC Advocate Summit 2014

Cancel Cancer-versary

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This year I let my pink-aversary, otherwise known as the day I was diagnosed just pass me by just like any other day.  There weren’t any plans to party or outrageous events scheduled at all.  Just me and my consulting business working the day away for my clients.  But you know, that was the plan.  crickets, baby, crickets…

The week prior, I accidentally hosted a Cancel Cancer-versary Happy Hour at Benjy’s Lounge in the Village with friends and colleagues to celebrate the fact that I would not be celebrating the day that I heard the words, “You have Cancer.”  Just five short years ago, hearing these words instantly changed my life and from then on I became the unwilling participant on a roller coaster of emotions accompanied by news from my doctors, employer, boyfriend, family and friends.  MD Anderson has a young program called Cancer 180 because that’s what happens when you are diagnosed, you make a 180 degree turn in your life.  Today, I hear commercials that say, “You have Cancer” and with genetic testing and so many awareness campaigns, I certainly hope that women don’t get a ticket to my sort of ride since breast cancer seems to have become common, which is really sad news.  These days cancer is becoming a chronic illness that some people are becoming accustomed to hearing.  And as an advocate, my work focuses on prevention and continued awareness as more and more drugs, and someday vaccines hit the market for breast cancer.  My biggest advice for all women is to be your own advocate and if something is wrong and your doctor doesn’t believe you, then find another doctor because no one knows your body better than you.

For me, this year meant that I would not continue to be defined by cancer and all it’s trappings.  I mean, who else celebrates the day they got divorced (besides me), or the day they were in a car wreck, because that’s exactly how a cancer diagnosis feels.  Survivorship is forever, but we are all survivors if you ask me.  Every single day we are all fighting cancer.  I’ve also learned that there are worse things than a breast cancer diagnosis and now that I’m five years away from my diagnosis, my mortality rate returned back to those of normal healthy women.  That’s right.  I’m an abnormal healthy woman.  Always have been.  Always will.

The coolest part about the night at Benjy’s was that I told our waiter that I had my first “Sandy Kicked Chemo’s Ass Party” at the Benjy’s on Washington, and he asked me what year it happened.  I said, 2009.  He says, I was working there at that time, and you know, I remember your party!  No way.  Yes, way.  Well, I continued, then I had “Sandy Kicked Radiation’s Ass Party at the same Benjy’s, when he looks at me as says, That party was much more subdued as I remember.  Well, Yes I said!  So, now we have moved up in the world and are now having the party to end all partys here at the Benjy’s Lounge in the Village with all the local doctors from the Medical Center, and he congratulated me.  Then, to top it off, as we sat in the middle section we had a great view to catch glimpses of the magical ceremony for the opening of the Olympics.

One of my friends commented, “See even all the countries are joining in your celebration.”

I couldn’t agree more.

C4YW No More

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The Annual Conference for Young Women affected by Breast Cancer known as C4YW has officially come to an end.  Yes, people gasped when they heard Jean Sachs, CEO of Living Beyond Breast Cancer, make the announcement and then exit the stage leaving Jennifer Merschdorf, CEO for Young Survival Coalition, with all eyes on her.

Jennifer is no stranger to catalyzing new found success in the name of change and I am proud of her.  She is a strong woman who held that space and slowly dissipated tension that ended with an applause for Jean. Soon, the two were back on stage together hosting an armchair discussion with the experts including Don Dizon, MD., FACP, who writes a column on Patient Engagement for ASCO, Kathryn Ruddy, MD., MPH, who worked with Dr. Partridge for six-years prior to moving to the Mayo Clinic and spoke about freezing ovary chips for reimplantation after cancer therapies, and Leonard Sender, MD., the self-proclaimed “anarchist” who urged us all to unite and stand up for our consumer rights for a fascinating discussion about topics sent via text and twitter.

Even though LBBC and YSC have been partners supporting C4YW for years, it was soon announced that YSC will hold it’s Inaugural Conference the first weekend in March of 2015 in my home town of Houston, Texas.  The Rodeo will have to wait while young women with breast cancer descent upon our great City for the first YSC conference.  And I for one, can’t wait!

The final C4YW weekend was a total success when I was dancing with a new survivor roommate friend from Houston who recently completed chemotherapy and even though she felt uncomfortable without her hair, she soon was seen dancing around while twirling her wig in one hand and posing for photos.  That was my personal highlight of the weekend, besides visiting Epcot for Super Sparkle Hours available only for those in conferences and staying on the property on Friday night where we had the place to ourselves.  The last time I was there I was nine years old.  Disney really is the Happiest Place on Earth, which is perfect for anyone diagnosed with cancer.

With almost six-hundred survivors, caregivers, family and friends in attendance, even I would not have been there without the continued support of Susan G. Komen.  Komen was the Lead Sponsor offering scholarships for almost two-hundred in attendance and even Chandini Portteus, Chief Mission Officer from SGK was on hand during the Welcome and Opening Remarks when the announcement was made that took us all by surprise.  And in my personal experience receiving so many travel scholarships while on my journey, Komen is almost always a sponsor.  Thank you Nancy Brinker.

All in all, even though this was only my second attendance to C4YW, there is room for incredible growth as YSC charges forward with a conference of their own.  Especially as we continue to mobilize our efforts to affect more young women around the globe, programs like the State Leader and Face to Face Support Group Leader will hopefully gain more opportunities to reach out and connect to those affected by breast cancer.  Because as you can see from the photo above, these were the current State Leaders available pre-breakfast for a quick discussion before the C4YW programs started, which leaves room for recruiting, educating and training more survivors and caregivers to continue sharing the message of YSC that no one affected by breast cancer should ever feel alone, uneducated or unempowered.

See you all in Houston in a year!