Teal Walk to Teal Talk - A Perfectly Teal Weekend

A Walk - Saturday
A few weeks ago I formed Team 1 Reason and registered my husband and I to walk in the Kaleidoscope of Hope Foundation's Avon-by-the-Sea walk. KOH raises funds for ovarian cancer research. On Saturday on a beautiful autumn morning we drove east to the shore. I was thrilled that my cousins Fred, Janine, Marion and Allison joined my team and many more family and friends contributed to the walk. Although the last donations to the team are not yet posted online it looks like we raised ~$ 2900 for Ovarian Cancer research. The entire walk raised ~ $101,000 for research.

We all enjoyed a day at the shore and are already planning to attend next year.

Walkers gathering on the Avon NJ Beach before the KOH walk.

Team 1 Reason

A Talk - Sunday

I wrote about teen Kristin Gmunder's role in an Ovarian Cancer Awareness Day in my last post.

She put together a wonderful program which included these presentations:

"ovarian Cancer 101" by Wilberto Nieves-Neira one of the wonderful gyn-oncs at CINJ.

"Genetics of Ovarian Cancer"Michele Horner MS, CGC St Peter's University Hospital 

"Preventing Cancer through Nutrition" Teresa Grasso , RD,CDE St Peters University Hospital

"Advocating for Government Support" Janice Swierczek , VP- Teal Tea Foundation

I told my story as did Kristin's Aunt, Karen Herzog a survivor who is part of OCNA's Survivors Teaching Students program.

I can say I walked away learning something new from each of the courses. Did you know that you should not have more than 66 grams of fat at day if your daily intake is 2000 calories? Did you know that ovarian cancer is heterogeous? ( There is not a dominant mutation but rather many mutations.)  Did you know that you can reduce your risk of ovarian cancer by having your first child before the age of 25? Did you know you should eat multicolor fruit and vegetables to get good anti-oxidants? This was a very nice and informative day. 

Great Job Kristin!

Dee

Every Day is a Blessing!

Ovarian Cancer Symposium Sept 29th Saint Peter's University Hospital

Last month I was asked to be a part of an Ovarian Cancer Symposium at St Peter's University Hospital in New Brunswick. This symposium was not being organized by a national ovarian cancer organization or even a local organization. Rather it is organized by a young lady to raise awareness of the disease both her grandmother and aunt have faced. Kristin Gmunder, of Branchburg, is a junior in high school and this Symposium will help her achieve her Gold Award in Girl Scouting. She believes that women of all ages should know the symptoms and risks of ovarian cancer.

The day will include speeches on ovarian cancer symptoms, genetics, nutrition, advocacy and survivor stories. Details about the event can be found here.

I am impressed by the motivation and organizational skills of this young lady and I look forward to meeting her in person!


Dee
Every Day is a Blessing!

What September Brings

Some days during September I wake up feeling great.  The sky is bright blue and cloudless. Temperatures start out cool and get a bit warmer as the day goes on. The weather here in NJ has been beautiful and I’m here to enjoy it.

Some mornings are just as beautiful but my mood is not as upbeat. With the bright sunny day also come the memories. I mentioned this to my husband yesterday as we took a ride to pick up some treats for our dog. I said I remember when we lived in Edison and I would put a cushion on the chair, wrap a blanket around my legs and sit out on the patio in the sun. I was in the midst of chemotherapy and couldn’t do much more than that. Some days I was so fatigued that I never made it outside but would sit by the window up in my bedroom just to get some sun on my face. I would hear the school bus drop off the kids next door. Life outside my room was normal but inside my room, well that was another story.

Some days I wake up ready to spread awareness. Writing my blog, tweeting, co- moderating a tweet chat, attending events and walking in the Kaleidoscope of Hope walk. September is Gynecologic Cancer Awareness month and women need to know their risks. Some of you might say “Dee you do that every day, not just in September”. You are right but somehow the intensity of awareness is magnified this month.

Then there are the days when my stomach feels a bit odd or my back hurts more than normal. Could that mean my cancer is back? Is it because I talk about the symptoms and risks for ovarian cancer over and over this month? Or maybe I am worried as I close in on CT scan time. “Scanxiety” is rearing its ugly head yet again. After all it was early October 2008 when I had a scan that showed the cancer had returned on my spleen and liver.

After 8 years I know the cycle of ups and downs I go through in September. The good days certainly outnumber the not so good days. And it is the support of family and friends that gets me through it all.

Dee

Every Day is a Blessing!

Globe-athon 2013

What is a Globe-thon you ask? Is it like a Walk-athon? Is it a Marathon? 

A few years ago Foundation for Women's Cancer held a 72 hour race around the Mall in Washington DC for physicians and  gynecologic cancer survivors and advocates.  The race was a huge success. Then someone brought up the idea of  holding a walk on the same day in countries across the globe.  

Today, Globe-athon is a  coalition of participants in  60+ countries who will walk  to raise awareness, education and research of women's gynecologic cancer's. This grass-roots international relay for gynecologic cancers will take place this year on the weekend of September 29th. People will march in solidarity with each other, women diagnosed with the disease, their caregivers and health care providers.  

Here is the reason why holding Globe-thon is so important.
"Global cancer statistics indicate that gynecologic cancers accounted for 19% of the 5.1 million estimated new cancer cases, 2.9 million cancer deaths and 13 million 5-year prevalent cancer cases among women in the world.  Each year, over 230,000 women are diagnosed with Ovarian Cancer worldwide. The majority of these women will die from the disease: Ovarian Cancer is responsible for an estimated 140,000 deaths per year, worldwide. Cervical Cancer is alarmingly on the rise in South and East Asia, Latin America and Africa with the incidence and death rate higher than it has been in 30 years.  These silent and deadly diseases are a major global priority. "(Source:globethon.com)

In NJ you can join the Globe-thon by walking in the North Jersey NOCC walk in West Orange , NJ. 
Click here to register. 

For more information on Globe-thon and to help "shine a light on these under the radar, below the belt cancers" See the Globe-athon website  and follow them on twitter at @Globeathon. 

Dee
Every Day is a Blessing!

We Did It! A Gyn Cancer Community is Formed!

As you know in August I agreed to be the co-moderator of the #gyncsm (gynecologic cancer) community tweet chat. Our first chat was scheduled for  Sept 11th.  There was a flurry of e-mails and tweets between myself and my co-moderator and the wonderful doctors who have agreed to advise and help moderate the chat.

I created a blog (http://gyncsm.blogspot.com/) for the community and looked for sources to share during our discussion. Each day Christina Lizaso, my co-moderator and I tweeted about the chat to promote the event and contacted those we thought might be interested in joining us. Christina developed the topics for discussion and a script for the night so we would cover everything we hoped to cover.

Then on Sept 11th at 9pm EST the chat began. It was wonderful to see survivors,  doctors as well as caregivers, organizations and advocates join our discussion. We discussed the importance of seeing a gynecologic specialist, symptoms of our cancers and what they hoped to get from being part of our chat. If you missed joining us you can find the transcript here. In the end we had 38 participants and over 400 tweets using #gyncsm during that hour.

I still think it is pretty cool that we could put this all together in about a month's time, never meeting face to face. We communicated through twitter and e-mail. And we could only do it because of the hard work of my co-moderator  and the support of our doctors Matthew Katz MD, MJ Markham MD, Rick Boulay MD, Don Dizon MD as well as Tamika and Friends and the Society of Gynecologic Oncologists. Thank you to everyone who joined us. We look forward to building a vibrant supportive community for those impacted by gynecologic cancers.

Remember the #gyncsm chat is the second Wednesday of the month at 9pm EST. Looking forward to discussing Genetics and Personalized Medicine at our October 9th chat.

Dee
Every Day is a Blessing!

It Really is about Research Dollars

Over the holiday weekend there were many posts on facebook about Ovarian Cancer Awareness Month. I myself posted about hanging ribbons with the Lopez family in Edison. I have been hanging ribbons with them for over 5 years.

Then a friend posted her status. Let me paraphrase what she wrote.

I hope everyone out there hanging ribbons to raise awareness will work hard to lobby their Congressman to support cancer research funding. 

I agree with her 100%. It is wonderful to make women aware of the disease and its symptoms. This way women will get diagnosed at earlier stages. But we also need, dare I say even more than awareness,  the research to better understand the disease,  to develop a screening test for the general public and to better treat the disease. 

We need more federal dollars for research and more private research dollars. 

Lets look at the estimated FY 2013 NIH funding for 3 gynecologic cancers and HPV vaccine research provided by the NIH at

http://report.nih.gov/categorical_spending.aspx

Cervical Cancer - $113 million

Ovarian Cancer - $148 million

Uterine Cancer -  $  42 million 

HPV/ cervical vacccine - $ 26 million

Together they do not equal the $800 million for breast cancer research. Actually most other cancers get more federal research dollars. Only Pancreatic and Liver cancer get lower funding than the gynecologic cancers. 

There is also an Ovarian Cancer Research Program(OCRP)  as part of the Department of Defense (http://cdmrp.army.mil/ocrp/ ) . The DOD OCRP program has a $20 million budget for 2013. 

So when the time comes for research budget discussions please spend the time to e-mail or call your congressman to ask to increase the funding for ovarian cancer research. Or if a local ovarian cancer organization raises funds for research through walks or auctions or other events - make a donation.  

Ribbons matter but funding for research is the key to save women's lives. 

Dee

Every Day is a Blessing!