2013 KOH Dinner and Supporting Research

Last Saturday, my husband and I attended the Kaleidoscope of Hope Foundation's (KOH)  Annual Dinner and Awards Ceremony at Doolan's in Spring Lake.

A few years ago I was a member of the  Board of Directors of KOH. This dinner gave me the opportunity to catch up with my KOH friends and gave me a chance to speak one-on-one with the researchers that KOH supported. This year KOH gave two research grant awards.

The first award went to George Preti, PhD who works at the Monell Chemical Senses Center in Philadelphia. The Center is a non-profit institute that conducts basic research on taste and smell. Dr Preti's research is titled " A Novel Aproach to Ovarian Cancer: Screening Using an Interdisciplinary Investigation of Its Volatile Signature". Dr Preti will collaborate with researchers at the University of Pennsylvania and the project will study the volatile chemical signature of blood from women with ovarian cancer and healthy women. Dr Preti was very willing to discuss his projects and invited me to visit his lab. I hope to provided a more detailed explanation of his research which includes dogs, a gas chromatograph to study head space above blood samples and nano technology.


The second grant award went to Britta Weigelt , PhD and Herbert Vargas, MD from Memorial Sloan Kettering Cancer Center. Their research is " Benchmarking Intra-Tumor Heterogeneity in Ovarian Cancer : Linking in-vivo Imaging Phenotypes with Histology and Genomics." I had a very interesting discussion with Dr Weigelt after the awards ceremony. She explained how there are DNA differences between ovarian cancer cells found in the same tumor. In other words even though a woman might have tumors with a pathology of epithelial ovarian cancer , the cells might be different genetically. I knew that there were various types of ovarian cancer but had not heard that the genetic makeup within a tumor could be different. This may explain why chemotherapy may work on some of the cells in a tumor but not others since their genetic makeup is different. And this may explain why some women recur quickly.

I am so happy that KOH continues to support OC research and that I can support KOH.

For more information on their research please see the awards page on the KOH website.

Dee
Every Day is a Blessing!

National Women's Survivors Convention

I am happy to share this information I received on the first National Women's Survivors Convention. It seems like it will be an informative and fun event. 

WOMEN SURVIVORS ALLIANCE ANNOUNCES

NATION’S FIRST NATIONAL WOMEN ONLY SURVIVORS CONVENTION IN

AUGUST 2013 IN NASHVILLE, TENNESSEE!

The Women Survivors Alliance (WSA) will host its inaugural event, the nation’s premier National Women’s Survivors Convention, August 22-24, 2013 at the Gaylord Opryland Resort and Convention Center in Nashville, TN.

 “The Women Survivors Alliance (WSA) has issued a national call to action for women affected by cancer so they can find their voice, improve their quality of life, embrace their new normal and help others,” says Karen Shayne, Founder and Executive Director National Women's Survivors Convention.  “The convention will bring together survivors, survivors caregivers, family members and health care professionals so they can share in a powerful way."

No, this is NOT your ordinary convention! This three-day, one-of-a-kind, high energy and entertaining experience for women survivors of all ages, all stages and all types of cancers and their caregivers offers a program of interactive workshops, keynotes, networking with other survivors, a special track for younger survivors (ages 18-35), an Survivors Marketplace Expo, head-to-toe makeovers, a 5K walk/run, spa experiences, individual empowerment sessions/demonstrations, and a celebrity concert finale.  Events surrounding the conference include a national cancer survivor life makeover contest, fashion show and survivor home makeover.

There are more than 7 million women cancer survivors in the United States.  Survivors must address the long-term and life limiting effects of treatments including physical, emotional, psychosocial, sexual, legal and financial challenges and issues.

To register for the conference or more information, visit: http://www.survivorsconvention.com/http://www.survivorsconvention.com/

Dee
Every Day is a Blessing!

My ASCO Post Interview

Back in January I was interviewed for an article in ASCO Post. I told my story, talked about my experience with my healthcare providers and talked about the importance of research.

Click here to read the interview.

I really appreciate the opportunity to share my story in a publication geared toward oncologists, clinicians and research scientists. Thank you ASCO Post.

Dee
Every Day is A Blessing!

N.E.D.'s Documentary Film

I am so happy to share information I received from  Spark Media. They have been working with N.E.D.,  the rock band,  to produce a documentary. If you don't know about this band of gyn surgeons and want to listen to some of their music you should definitely check out their website (http://www.nedtheband.com/).  I hope you like the great music from some pretty awesome doctors! 

"No Evidence of Disease, a new documentary film by the award-winning team at Spark Media, is about N.E.D. a rock band of 6 GYN cancer surgeons outraged by the wall of silence surrounding their field. With grace, honesty, even humor, NED interweaves the challenging journeys and remarkable courage of women, devoted families and dedicated doctors, as music and medicine join forces in the fight for survival. If you have questions, want to get involved, or would like to host a screening, contact us at: info@NEDTHEMOVIE.com "You can watch a trailer from the movie here.

 "AND THERE’S MORE: Spark Media has produced a 16 minute piece entitled: What Every Woman Should Know. It’s all the latest info about the 5 major GYN cancers, explained by the rock/doctors, their patients, N.E.D.’s music and graphics." Check it out here http://vimeo.com/57096962

Visit the movie website: www.nedthemovie.com
Like them on Facebook: FB.com/NEDmovie

Dee
Every Day is a Blessing.

Your Cancer Team

Below is a wonderful video by the SGO which describes the role of every member of a women's gynecologic cancer team.




Dee
Every Day is a Blessing!

Frankly Speaking About Gynecological Cancers ~May 1, 2013

Frankly Speaking About Gynecological Cancers

Wednesday, May 1, 12 -1:30 pm

Guest Speaker:  Darlene Gibbon, MD, Clinical Director of Gynecologic Oncology, Cancer Institute of New Jersey

Dr. Gibbon will offer information on the latest research, treatments and side effect management to optimize your quality of life during and after cancer treatment.  A light lunch will be served.

Preregistration required. Contact elevine@cancersupportcnj.org or 908-658-5400

I hope to be able to attend this program presented by my gyn-onc. I hope to see you there. 

Dee

Every Day is a Blessing!

Guest Bloggers: Marc and Maya Silver, Authors of "My Parent Has Cancer and It Really Sucks"

I am so pleased to offer my readers this guest post by Marc and Maya Silver. Marc and Maya are the authors of  "My Parent has Cancer and It Really Sucks ~ Real Life Advice From Real Life Teens" which I recently read.  

My son was in college and my daughter was a college graduate when I was diagnosed but my husband and I were still worried about the effect my disease would have on them. That is the reason why when I started reading the book I decided to start in the back of the book and read Appendix C - The Parent's Guide first. As I read the section I thought to myself - yup that is what I would do or I've heard other survivors say that is how they told their teen. Great advice for parents. Then it was time to get into the meat of the book. My favorite chapters were  Cancer 101 , Parentification, Dealing with Stress, Facing a Dire Prognosis and  The New  Normal: Life After Cancer. The book is filled with advice and stories from teens to teens. And  for those who are looking for some advice from professionals ( social workers/ therapists/ teachers) you will find helpful tips nestled into each chapter.  I highly recommend this book for parents and teens and I hope you enjoy this guest post by Marc and Maya Silver.

How to Have the First Cancer Talk with Your Teen

You think it’s hard talking about the birds and the bees? That’s nothing compared to the c-word: cancer.

You can delay the first talk a little bit. But just a little bit. Maybe you want to get your information together. My wife and I found out on a Friday and waited until the following Tuesday, after a visit to the surgeon, so we could have more information to pass on. Since it was the weekend before the school year started, we didn’t want to add to the kids’ anxiety over the first day of classes. And to be honest, we needed a little time to face our own fears and emotions before sharing the news.

But tell them we did, in the car, when we picked them up from school. We gave it to them straight: Mom has breast cancer, that will definitely mean surgery and probably chemotherapy and radiation treatments, and we’ll tell you what’s going on as we find out more. But it wasn’t easy. We were both holding back tears.

As we wrote our guide for teens, My Parent Has Cancer and It Really Sucks, we asked many experts: How do you have that first talk? Here’s some of the advice they shared.

You can’t put it better than psychologist Richard Ogden, whose wife was diagnosed with breast cancer: “Our guiding principle was to say it clearly and straightforwardly, without hedging, without trying to whitewash. To say what we know, to say it simply. The tightrope is between giving the information we feel needs to be given and not giving more information than is necessary.”

So if you’re waiting for certain test results and feeling a bit anxious, you don’t need to share all that with the kids. Wait until you get the results, then let them know what’s up.

How do you know if you gave the right amount of info? Ask the kids after a day or so: Did we answer all your questions? Do you have any new questions? They might ask a tough medical question. If you don’t know the answer, you can say, “That’s a good one. I’m going to ask the doctor for the answer on my next visit. Or the question might be: “Who’s going to take me to soccer practice?” And that’s a perfectly reasonable teen question, because teens are very wrapped up in their own world (kind of like adults). You might say: We can still manage it. Or: Let me check with a teammate’s parent to be a back-up driver just in case.

Above all, honesty is indeed the best policy. “My children have told me over the years the thing that helped them most was that I was always honest,” says physician Wendy Harpham, who was diagnosed with lymphoma in 1990 and has had seven recurrences. “They never worried: Is there something else going on, is she telling me the whole story?”

If you’re the kind of family that has family meetings regularly, then you call a meeting. If you’re a family that never has meetings, your kids might be weirded out if you announce that for the first time, you’re about to have an Important Familiar Confab in two hours. You might try using a family meal, or just call the kids together for a quick chat.

The car is also a good place to share news – no one can leave the premises and you don’t have to look each other in the eye, so conversation can flow.

Some families combined the bad news with an upbeat activity. After Tyler’s parents told him mom had breast cancer, Tyler recalls, “We started freaking out a little. To cheer everyone up, we just started to play a bunch of games.” Allison, 13, of Idaho, recalls: “They took me to Barnes & Noble and bought me a stuffed-animal deer and we sat down at Starbucks and they gave me cheesecake and they told me.” That’s a way of letting the kids know that life goes on, even after a cancer diagnosis, and you can still have fun as a family in spite of cancer.

Marc and Maya Silver are the authors of My Parent Has Cancer and It Really Sucks, the first guide for teens whose parents have been diagnosed with cancer. Marc Silver is an editor at National Geographic and author of Breast Cancer Husband. He lives in Chevy Chase, Maryland. His daughter, Maya Silver was 15 when her mom was diagnosed with triple negative breast cancer. Now 27, she is the winner of the Diane Vreuls Fiction Prize at Oberlin College and lives in Colorado. They are the authors of My Parent Has Cancer and It Really Sucks, the first guide especially for teens whose parents have cancer.

I hope you enjoyed this post and will find time to read the entire book. 

Dee

Every Day is a Blessing

CSC-CNJ Program: Frankly Speaking About Gynecological Cancers

Frankly Speaking About Gynecological Cancers

Wednesday, May 1, 12 -1:30 pm

Guest Speaker:  Darlene Gibbon, MD, Clinical Director of Gynecologic Oncology, Cancer Institute of New Jersey

Dr. Gibbon will offer information on the latest research, treatments and side effect management to optimize your quality of life during and after cancer treatment.  A light lunch will be served.

Preregistration required. Contact elevine@cancersupportcnj.org or 908-658-5400

Cancer Support Community Central New Jersey

3 Crossroads Dr.

Bedminster, NJ 07921

I have been to this program in the past and always come away having learned something new. 

Dee

Every Day is a Blessing!

Laurel of Arlington a Woman of Teal

Late Saturday night I learned that Laurel died from ovarian cancer.

I never met Laurel in person.Yet,  I felt as close to her as if she lived next door. Laurel was a online friend. I met her through a very special Facebook group which includes women from the UK and the US. What binds this diverse group of women is a diagnosis of ovarian cancer. We celebrate the good times and sadly we share the pain of loosing a member.

I can't share what we talk about in our group - it is confidential. What the group does best is listen - well in the case of our group read - what each other has to say. With the time difference between the US and UK there is usually someone online ready to listen and respond.  Sadly, that meant Laurel wrote and we all read her post saying that there were no more options for her. And we read when another in our group had to share the news that Laurel had passed.

Here is what I can share about Laurel. She was a single mother of two girls. She lived in Texas and was only a few months shy of turning 32. Yes, she was just 31 years old. Too young for this disease you say? I agree but sadly it happens. And as cliche as it sounds she was a fighter for herself and her daughters.

People often ask me why I spend so much time advocating for ovarian cancer survivors and funding for ovarian cancer research.

Here is yet another reason- Laurel Phillips. Rest in Peace my friend.

Dee
Every Day is a Blessing!