I'll be a Panelist at e-Pharma

I am very excited to have been invited to participate in the 12th Annual e-Pharma Summit in NYC as part of a panel discussion session titled " Social Media for Pharma: A Match Made in Heaven or Hell?". The panel is made up of health activists like myself who use social media to raise awareness of illnesses. We will be discussing whether or not the educational social media programs of pharmaceutical companies actually affect health outcomes. 

The 12^th annual ePharma Summit, takes place on March 4 – 6 . ePharma is attended by pharma folks and the content includes interesting case studies and  keynote presentations. This year the Summit includes insights into healthcare reform and its effect on pharma and a panel on Electronic Health Records. Industry leaders including Dan Lyons, formerly of Newsweek and Fast Company and Chris Frank of AmEx and author of Drinking from the Fire Hose: Making Smarter Decisions without Drowning in Information are among the speakers.

What’s unique about the Summit's format is its' collaborative nature . This means the better the quality and diversity of the audience, the better the conversation and more valuable the outcome for all those attending. 

If you are interested in attending please Click here to visit the website and my personal discount code for 20% off the registration rate is XP1806SPKDS . 

Dee
Every Day is a Blessing!

Taking a Ride

This post is dedicated to Theresa, Matthew and Alycia who have given me the opportunity to "take a ride". 

Ever since my daughter started college in Carlisle, Pennsylvania  back in 2000, I have had the pleasure of visiting my children and my niece in seven different states. 
Blacksburg , Virginia 
Columbia South Carolina
El Paso, Texas
Lawton, Oklahoma
Richmond, Ky
Manhattan, Kansas
Auburn, Alabama

Many people would not necessarily call these locations travel destinations.  But I know that they are wonderful places to visit and get to know. I've enjoyed eating where the locals eat and seeing how each location celebrates the Christmas holidays.  I've visited museums, art or history,  in most places they have lived.  And let's not forget the marvelous zoos. Or how the stars just seem to sparkle brighter in the night sky in Kansas and Texas. 

Road trips have allowed me to see some beautiful states on the way to these destinations. The mountains of western Maryland and West Virginia are breathtaking. The miles of farmland in Indiana, Illinois and Missouri are a wonderful site in the summer time. North Carolina , Georgia, Louisiana and Mississippi give you the opportunity to meet some friendly folks and taste some delicious sweet tea. I am amazed at how delicious and varied the  pulled pork and BBQ is in the different states. 

This Christmas when we were traveling out to visit Theresa and Andy, I heard a song by Jason Aldean called "Fly Over States".   The lyrics speak eloquently of those states I've had the pleasure of visiting.

"Fly Over States" Jason Aldean
(http://www.azlyrics.com/lyrics/jasonaldean/flyoverstates.html)

A couple of guys in first class on a flight
From new York to Los Angeles,
Kinda making small talk killing time,
Flirting with the flight attendants,
30, 000 feet above, could be Oklahoma,
Just a bunch of square cornfields and wheat farms,
Man, it all looks the same,
Miles and miles of back roads and highways,
Connecting little towns with funny names,
Who'd want to live down there in the middle of nowhere,

They've never drove through Indiana,
Met the men who plowed that earth,
Planted that seed, busted his ass for you and me,
Or caught a harvest moon in Kansas,
They'd understand why god made those fly over states,

I bet that mile long Santa Fe freight train engineer's seen it all
Just like that flatbed cowboy stacking US steel on a 3-day haul
Road and rails under their feet
Yeah that sounds like a first class seat

On the plains of Oklahoma
With a windshield sunset in your eyes
Like a watercolored painted sky

You'll think heaven's doors have opened
You'll understand why god made
Those fly over states

Take a ride across the badlands
Feel that freedom on your face
Breathe in all that open space
Meet a girl from Amarillo
You'll understand why god made
You might even want to plant your stakes
In those fly over states

Have you ever been through Indiana
On the plains of Oklahoma
Take a ride.

You might be wondering why I am posting about road trips in my blog about life as an  ovarian cancer survivor. I am not sure how many other survivors feel the same way but since my diagnosis I would rather make memories by experiencing things  such as spending time with family and friends and visiting places than buying things. I value everyday ordinary things and do not want to rush life.  Rather I want to take the slower route by car visiting "The Fly Over States" and in the process experience the  joy of seeing some very beautiful parts of the country. 

Dee
Every Day is a Blessing!

2013 - A New Year Begins

Well here I am celebrating another New Year.  I am truly blessed.

Back in 2007 I had a conversation with Andy, my then future son-in-law, about his interest in the US Army Foreign Area Officers Program. He told me he could possibly move to this program in 2013. I remember thinking to myself that 2013 seemed so far off. And I really was not sure that I would be healthy or even around to share it this new stage of his career.

But here it is the first day of 2013 and guess what happens in June this year? My son-in-law, daughter and grandson will be moving to Monterey California so that Andy can begin a language course to become a member of the Foreign Area  Officer. I am thrilled for all of them.

So what will I be doing in the year ahead?
I will try to stay healthy by being active .
I will advocate for ovarian cancer research.
I will continue to work with my dog Amber as she becomes more comfortable doing agility.
I will paint and crochet more.
I will visit my daughter and family in California and my son in Alabama.
I will experience life with its' ups and down.

What are you looking forward to in the year ahead?

Dee
Every Day is a Blessing !

The Love of Christmas

I just realized that I have not posted anything to this blog in 10 days. Sorry about that. But the Christmas Holiday season has pulled me away from blogging to spend time with others.

I love the Christmas Holiday season. I love getting together with family and friends. And I am blessed that I have been able to do that. I loved stopping by a new neighbor to drop of a gift and staying for tea and cookies.  I loved going out to dinner with my cousins and having some fried zucchini flowers. They reminded me of my Aunt Dora who I miss so much. I loved seeing my brother-in-law and catching up on the latest news. I loved seeing so many beautifully decorated homes especially in the snow. I loved seeing my niece and her family. I feel my sister present when we play with my 2 year old great nephew.  I loved that my husband and I were able to spend time with my son, daughter, son-in-law and grandson. My how JT has grown.


But the best part was celebrating the birth of Christ at Vigil Mass singing with my family - "Joy to the World"!


Dee
Every Day is a Blessing!

A pathway and chemo resistance

Continued research by Dr. Joanne Weidhaas  has resulted in  a recent journal article that further establishes the KRAS gene mutation as a predictor of poor outcomes and chemotherapy resistance for women with epithelial ovarian cancer. 

Let's step back a bit. 
The KRAS gene  is the "v-KI-ras2 Kirsten rate sarcoma viral oncogene homolog". So glad they use the KRAS abbreviation. It is also know as an oncogene because a change in its makeup can cause a cell to become cancerous.

The KRAS gene produces the KRAS protein which controls cell division. It is a  part of the signaling pathway RAS/MAPK . The protein signals whether or not the nucleus should divide or not.The KRAS protein acts like an on off switch . It is turned on when it binds with the molecule GTP. When it converts GTP to GDP  it is turned to an  off position . 

In the article
 "A KRAS variant is a biomarker of poor outcome, platinum chemotherapy resistance and a potential target for therapy in ovarian cancer" 
The authors found that post menopausal women with the Epithelial Ovarian Cancer and this gene mutation were more likely to be platinum resistant and to die from the disease. This information  certainly opens the door to developing new treatment options for women with the mutation.


Dee
Every Day is a Blessing!

Sources :Genetics Home Reference a service of the US National Library of Medicine

A Friendship Ended Too Soon

At 8:30 am this morning I got a phone call from my friend's niece. She called to tell me that my friend had passed. It has taken me all day to be able to write yet another post about a woman and friend from my support group who lost her life to cancer.

Pam was a special lady. She was good friend. We met at the very first meeting of the Gynecologic Cancer Support Group at the Cancer Institute of New Jersey (CINJ)  back in 2007. We hit it off right away.  We were diagnosed less than a year apart with stage III ovarian cancer.

She loved to travel and so did I. In 2009, we both went on cruises to Alaska. When she came back she gave me tips on what to bring. It seems that going on a trip after treatment cycles was our pattern.

She loved Jimmy Buffet and would travel all over to go to a concert. She was a member of the Parrot Heads. Pam and the group put together a fundraiser ( I think it was 2008) and the money went to CINJ.She held another fundraiser at Leggett's and that is when I got to meet so many more of her family.

Parrot Head fundraiser- Pam, me, Julie, Ann

We got together at the  Ovarian Cancer Survivors Course in New York City at NYU. This time our husbands came along and they got to meet each other. Nick and Ed would attend many ovarian cancer events with us especially if they knew the other was going.

We both attended the CINJ Foundation dinner to honor our gynecologic oncologist, Dr Darlene Gibbon.

CINJ Foundation Dinner with Rita Kay(left) and Pam(right)

When I attended conferences Pam would always ask me what treatments were in the works for us. Then we would both lament how long it took to get the treatment from clinical trials to patients. Both Pam and I took part in clinical trials. If only more women like Pam took part in clinical trials researchers would get the answers to the many questions they have about cancer.

Pam was always ready to help the women in our group especially with computer issues.She was our resident techie. She helped a few woman learn software and fixed internet and software issues.

We also served on the Patient Advisory Board of CINJ together. Once again Pam was ready to help in any way she could. Pam was a real driving force behind the LiveSTRONG Survivor's Day quilt that now hangs in the lobby of CINJ. She showed up at one of our meetings with a bag of quilt squares and fabric and the ball got rolling.

Pam and I attended many of the same ovarian cancer awareness events over the last few years-  the Kaleidoscope of Hope Avon Walk and the Teal Tea Foundation's Tea every May.

Teal Tea 2011

During the past year when Pam was in treatment I would frequently pick her up at CINJ at 5pm on the second Tuesday of the month.  Off we would head to Panera's on Rt 1 or up  Easton Avenue to the chinese restaurant. Sure we talked about check-ups and treatments but that wasn't all. Over the years we became more than just two women with ovarian cancer. We became friends. We got together to chat about what was happening in our lives. We talked about our husbands and families. We shared stories about places we traveled to. I remember how excited she was when my grandson was born. Then we would head back to CINJ for our monthly group meeting.

I imagined that we would have many more years of friendship but that is not to be. But my memories of this friendship will last forever.

Rest In Peace Pam.

Dee
Every Day is a Blessing. And Pam was a blessing in my life.

Ovarian Cancer on ESPN-W

I follow a number of ovarian cancer organizations on Facebook and Twitter. The other day I read a tweet that referred to an article on a site called ESPN-W , an ESPN website for women who love sports. ( I love crew and college football.) What a great way to reach women and raise awareness of ovarian cancer. The title of the article was "Ovarian Cancer an Under the Radar Killer"by Melissa Isaacson. Thank you Melissa for taking the time to highlight ovarian cancer (OC) on this site.

Overall the article did a good job sharing the story of Roni Lemos, describing the symptoms of the disease, reporting the statistics and stressing that women should advocate for themselves when it comes to their health. There are two parts though I want to comment on.

There was a quote made by an NOCC representative- "It's a very sad, sad cancer ". Sure ovarian cancer is sad - for women diagnosed and those who care for them. It is sad for those in treatment and sad when women lose their lives because of ovarian cancer. But honestly,  all cancers are sad.  And I say that as someone who has dealt with OC and someone who also has had family and friends who were treated or lost their lives to cancer - breast, kidney, brain, liver, testicular, cervical, & prostate.

"It is also an unpopular disease as far as funding goes,...  " Over the past 7 + years I don't think I ever heard ovarian cancer described as unpopular before.  Is any cancer popular? I assume we can say that breast cancer is popular since in 2011 it received ~ $600 million more funding for research than ovarian cancer.  And yes, we should increase OC research funding. I would have liked to have the author provide reasons why more research funding for ovarian cancer is crucial.  Funds for OC research could help develop a screening test, gain a better understanding of the paths to developing the disease, to develop more personalized treatment plans, to use the Human Genome project data to develop new treatment options and to develop treatments for women who are battling recurrent disease.

There are reasons why breast cancer gets more research dollars. More women are affected each year by breast cancer than ovarian cancer.  And national breast cancer organizations have been raising awareness of the disease and funds for research for a much longer period of time than there have been organizations raising funds for ovarian cancer research. The author did note that breast cancer research can translate to other cancers.

This article was a good place to start the conversation about ovarian cancer among women on this site. I hope the author will follow up with additional information like risk factors and BRCA mutations for her readers.


Dee
Every Day is a Blessing!