Friday, March 27, 2015

Family


Our family tree - a gift from my son and daughter-in-law

Last weekend was filled with joyful celebration. We traveled to Auburn, Alabama to attend my son's wedding. My husband and I were so happy to welcome a very beautiful, caring, smart and talented "daughter" into our family and we were touched by the family and friends (both ours and my daughter-in-law's) who made the trip to witness the beginning of Matt and Amanda's new life together.

In 2008, a few weeks after my surgery for a recurrence,  two very good friends gave me an  Operation Bling Foundation necklace. During the past few years I took it out often and looked at it and thought about the support my friends provided and smiled.  But it never seemed the right time to wear it. The right time was on Saturday when I was there for a milestone in  my son's life.

I know I've written this many times before on this blog but back in 2005 I did not think I would see my son graduate college, get his Master's degree or marry. But there I was sitting in the front row with my grandson on my lap watching him and his wife say their vows. Holding back tears. Feeling very blessed.


Dee
Every Day is a Blessing! Blessed to have Amanda as part of our family.


Monday, March 16, 2015

A Teal Walk for Ovarian Cancer Research - The Sandy Sprint



No need to wait until September to help raise awareness of ovarian cancer and funds for research. You can take part in the Sandy Sprint Super Hero 5K/10K this April. The Sprint is hosted by the Sandy Rollman Ovarian Cancer Foundation at the Philadephia Art Museum in Philadelphia.  This year is extra special as the Foundation will celebrate its 15th Anniversary.

While not required participants are encouraged to dress as their favorite Super Heros and to raise $150. If you are unable to attend you may participate as a Sleepwalker. Last year's almost 4000 participants raised $252,000 for research. Funds raised at this year's event will support the Ovarian Cancer Dream Team and the Ovarian Cancer Research Grant Program.  

I have completed this walk in the past and had lots of fun with other survivors and caregivers. These survivors would love for you to help out this year.


To register visit www.sandysprint15.kintera.org
Online registration closes on Wednesday April 22nd.


Dee
Every Day is a Blessing! Blessed for Foundations like Sandy Rollman who are raising funds for research and a cure.


Sunday, March 15, 2015

Your Immune System and Cancer Treatment - Cancer Support Community Free Progam

Research into developing  immunotherapy treatments for various cancer has increased dramatically over the past few years. Here is a link to an article on the immunotherapy treatments for advanced melanoma and cervical cancer that were highlighted at the 2014 ASCO Annual meeting. 

In an effort to inform patients about immunotherapy treatments a free workshop on your immune system and immunotherapy as a cancer treatment will be presented in NJ.

Thursday , April 16, 2015
6:00-8:00 PM 
Bridgewater Manor
1251 US 202/206 
Bridgewater NJ
Dinner will be served.

Registration is required . Please contact Cancer Support Community Central Jersey at (908)-658-5400 to register (www.cancersupportcnj.org) .

Please click on the image above for speaker information and sponsors of the event.

Dee
Every Day is a Blessing! 



Subway Series, Teal and NOCC

Help raise funds to assist NOCC in it's mission to raise awareness and support women with ovarian cancer by taking part in this exciting sporting event.

A portion (15%) of the regular price tickets sold for the 4:05 pm April 25th Yankees vs  Mets baseball game at Yankee Stadium will go to NOCC.
Please click on the image below for more information or see
--> http://nocc.kintera.org/YankeesMets.

Dee
Every Day is a Blessing!

Sunday, March 8, 2015

Real Rock Stars

I watched NED (No Evidence of Disease) - the Movie a few nights ago. A local PBS station was broadcasting it so I set my DVR.  The documentary is about six gynecologic oncologists, talented musicians, who form a band. As NED plays concerts we get to meet some of the band member's patients and biggest fans.

I have wanted to watch the Movie since it was released but I was uncertain of how I would react to it. It turns out I experienced all the reactions I thought I would.  First, let me say I loved the music.  It was so nice to see the personal sides of the doctors.  I smiled as I watched them hug their patients because that is the type of relationship I have with my gyn onc. I nodded my head as the patients told their stories and I cried as I watched and listened to a husband whose wife had passed away.

I know there are many worthwhile quotes from the movie but these are three of my favorites.

"...Breast cancer might have pink ribbons but we have a Rock Band." And what a talented Band they are!

"Awareness is the first step." Not all gyn cancers have screening tests so being aware of changes in a women's body is important to diagnosis.

"...spirit is what makes you a woman." It is difficult to feel feminine when you have had your ovaries , fallopian tubes, uterus etc  removed  and  have no hair during treatment but this patient was so right when she talked about a woman's spirit.

Be sure to check out the movie's website ( http://www.nedthemovie.com/ ) for the broadcast schedule and the band's website (http://www.nedtheband.com )  to learn more about the band members and their music. I highly recommend NED the Movie. 

Thank You
John Boggess, M.D.
Joanie Hope, M.D.
Nimesh Nagarsheth, M.D.
William "Rusty" Robinson, M.D.
John Soper, M.D.
William Winter, M.D.
for sharing your talents - medical and musical with us. 
 
Thank You 
patients and families for sharing your narrative.



Dee

Every Day is a Blessing!





Saturday, February 28, 2015

Today Feb 28th is Rare Disease Day

I wrote a piece about Rare Disease Day for the #gyncsm blog.  Here is some of the content from that post.

DAY by DAY,
HAND by HAND
 
Rare Disease Day logo





The #gyncsm community has once again joined forces with rare disease patients and health care advocates in the U.S. and around the world for Rare Disease Day® on February 28th.  Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and the community.
In the United States, a disease is considered rare if it is believed to affect fewer than 200,000 Americans. Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children. There are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatments. 
Do you know the gynecologic cancers that are considered rare diseases by the NIH's Office of Rare Diseases ResearchThey are:

Ovarian
Uterine,
Endometrial,
Fallopian tube,
GTD (Gestational Trophoblastic Disease),
Vaginal and
Vulvar cancers

Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face.  It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe. Rare Disease Day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases.

Watch this Rare Disease video





For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us.  For information about global activities, go to www.rarediseaseday.org).  To search for information about rare diseases, visit NORD’s website, www.rarediseases.org.
Dee
Every Day is a Blessing!
 

Friday, February 20, 2015

Another Six Months

Yesterday was my routine follow-up exam appointment with my Gynecologic Oncologist.  I had not seen my doctor in six months so it was nice to catch up on things.  First up were the non-medical questions beginning with "So where are the pictures of those grandbabies? Then she asked about my son's upcoming wedding, where my daughter and her family are living now and lastly about my advocacy work. By asking those questions about me first she has over the years gotten to know me as Dee not just some woman with Stage 3 serous epithelial ovarian cancer. She has been "patient-centered" for as long as I have known her.

When we got down to the business of how I was doing medically, the first thing on the agenda was my CA-125. I have posted here about the up tick in my CA-125 result recently and how the method to determine CA-125 was changed at the lab where I have my blood work done.  We discussed how though my recent numbers were higher than with the other test method, they where stable ( 21, 20 U/ML) and she was comfortable with those results. 

We then turned to discussing the results of my recent CT scan. She turned to me with a big smile on her face and said - all clear. I had read the results two days after the scan on my patient portal but it was still great to hear her say it. 

The internal exam, not my favorite part of the apointment,  ended with "You're good". Hurrah! So while there was some concern that there was a different cause for my rising CA-125 it appears that based on the clear scan and exam , the method change is the true cause of the bump up.

With so many exciting things happening in the next month or two I am happy that I can put my recurrence worries back on the shelf for 6 more months.


Dee
Every Day is a blessing!