What Will You Do During Ovarian Cancer Awareness Month?

September is right around the corner.

Did you know that September is Gyn Cancer Awareness Month in the US? Gynecologic cancers include Ovarian  Cervical, Vaginal, Vulvar, Endometrial/Uterine, Primary Peritoneal and Fallopian Tube cancers.

During September things can get really busy as the number of awareness events increases exponentially.

On Wednesday, September 11th the #gyncsm community, which I co-founded with Christina Lizaso, will celebrate the community's 6th Anniversary. Our topic will be The Breast and Ovarian Cancer Connection. Join us and a representative from the National Society of Genetic Counselors at 9pm Eastern Time.

This year there are a number of awareness and fundraising events in NJ that you can participate in.

I already mentioned the Rutgers Cancer Institute of New Jersey Patient Education event on September 12thin the previous blog post. Check it out here.

There is an Education event sponsored by Summit Medical Group on September 7, 2019. For more info and to register  call 908-277-8889 or sign up online at: summitmedicalgroup.com/events 
 

 As for walks I will be doing the Kaleidoscope of Hope Ovarian Cancer Foundations walk in Bradley Beach on September 28, 2019. They also hold a walk in Morristown ( Sept. 15) and Lyndhurst (Sept. 22) . Check their website ( https://kohnj.org/funded-research/) for research they have supported.
If you would like to donate to the walk please visit https://www.classy.org/fundraiser/2226659

The NJ Chapter of NOCC is joining the Downtown West Orange Alliance for the  Mayor's 5 K and Walk. You can find more information at http://ovarian.org/component/events/event/955

The Teal Tea is holding Falling For Teal Fashion Show on Sept 22nd. You may find more info at https://www.tealtea.org/event-falling-for-teal-fashion-show .

Graceful Hope will be holding their 6th Annual benefit dinner to benefit Rutgers Cancer Institute of NJ in Elizabeth on September 28th. See their Facebook page for more information. https://www.facebook.com/GRACEfulHope/

For my Central and South Jersey Friends , the Sandy Rollman Foundation is holding a number of events in September including an Ovarian Cancer Awareness night at the Phillies (9/12) , a General Hospital Philly events (9/14) and OvaryAct Gala (9/20). Please check their website for more information ( https://sandyovarian.org/ ).

Of course you can help raise awareness by hanging teal ribbons. See the Turn the Towns Teal website for how you can help ( https://www.turnthetownsteal.org/ ).

If you are holding an event in NJ to raise awareness or funds for research . Please let me know and I will update this post.

Dee
Every Day is a Blessing!

The Threads of My Life

Graceful Hope was started by the Rocha family. Grace Rocha and her daughter Erika were both diagnosed with ovarian cancer and treated at Rutgers Cancer Institute of New Jersey,  were I was treated. Sadly Grace passed away in 2008 and Erika, initially diagnosed at the age of 16,  passed away in 2011.

I first met the Rocha family in 2012 when they asked me to share my survivor story at the 2nd Benefit. This past weekend I was once again honored to speak at the 5th Annual Graceful Hope Benefit for Ovarian Cancer Research. This year the funds raised were being presented to Rutgers Cancer Institute of NJ.

Here are portions of my speech - The Threads of My Life.

Speaking at the Graceful Hope 5th Annual Benefit

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Some survivors say Cancer is a Gift others say it most definitely is not. For me I think of Cancer as a thread in the fabric of my life and over the past 12 years many new threads have been added.

Graceful Hope has became a thread in that fabric starting in 2012 when I had the privilege of sharing my story with many of you. 
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In the late spring of 2005 I went to the ER for intense pain on the left side of my abdomen. That led to a series of tests and a referral to Dr Rodriguez at RCINJ. I woke up from surgery on July 29^th to learn I had stage 3b epithelial ovarian cancer. I can still remember the words Dr. Rodriguez said to me as she left the recovery room - “ I will do everything I can to make you well.”  She offered me hope as I joined the almost 700 women who would be diagnosed in NJ that year.

She also offered me a phase 1 clinical trial of standard chemo along with selenium which I decided participated in. Nine cycles and 7 months later I was told I was disease free. The thread as survivor added to my fabric.

As my hair grew in and I became stronger I went to follow-up visits at CINJ.  I heard about the LiveSTRONG  Survivors Summit in Austin , Tx . Attending that summit weaved another thread in my story that of being an advocate.  It was an incredibly empowering experience and laid the groundwork for my involvement in a number of organizations, educating about symptoms and blogging .

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Life slowly returned to a new normal. I went back to work. I watched my son graduate college, my daughter receive her graduate degree and marry in May 2008.

In Oct that year, after a routine CT scan Dr. Rodriguez called me to say that my cancer had returned in two spots one on my liver the other on my spleen. This time I knew a lot more about ovarian cancer so I looked at the three treatment options I was offered and decided I would have surgery first – which included removing my spleen and resectioning my liver - and then six chemotherapy treatments. In the spring of 2009, I heard there was no evidence of disease.

I’ve gone back to yet another new normal, which includes spending time with family which grew by  two grandsons and a daughter-in-law , dog agility, and of course advocacy. I feel I have a responsibility to all the women diagnosed with ovarian cancer who are no longer with us to be their voice and to speak up for the needs of women dx with the disease. Since my recurrence a major portion of my time is spent on research advocacy work and supporting other survivors.

In 2013, along with another ovarian cancer advocate I cofounded the Gynecologic Cancer Social Media Community on Twitter which we call #gyncsm. And another thread was added to my life. Along with our co-moderators, three  gynecologic oncologists and a psychologist,  we hold monthly chats on topics of interest to those impacted by gyn cancers. Because of my work with gyncsm I’ve had the amazing opportunity to attended the Am Society of Clinical oncology Annual Meetings and became an advocate member of the society ...

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There are times the neuropathy in my toes bothers me.  Chemo brain frustrates me. And I still get anxious waiting for test results.  But the threads of my life have including many blessings. I’ve had the opportunity to meet amazing women diagnosed with ovarian cancer like Tina, Dawn and Terry.

In the past almost 12 years I have seen progress for women with ovarian cancer – new medicines, targeted therapies, IP chemo, recommendations that women with OC to receive genetic testing, research into immunotherapy and circulating DNA. And it is survivors, caregivers and friends  like you – those passionate about raising awareness and finding a cure that are helping make a difference. 

It is wonderful to be here as you celebrate your 5^th event. The Graceful Hope family has weaved their thread into my life and my heart. Thank you.

Dee
Every Day is a Blessing!

NJ Events: Graceful Hope 5th Annual Benefit Dinner

 I am happy to be sharing another event in NJ to raise awareness and funds for ovarian cancer research. This dinner is being held by the Graceful Hope ovarian cancer organization. 

TICKETS ARE CURRENTLY ON SALE for GRACEful Hope's 5th Benefit Dinner to raise funds and awareness for ovarian cancer!

Date: Saturday March 4th, 2017
Location: PISC- Portuguese Instructive Social Club in Elizabeth, NJ

You may purchase them directly on link below.
link: http://gracefulhope.weebly.com/graceful-hopes-5th-benefit.html



Dee
Every Day is a Blessing!

Thankful for: OC Research Support

There are many organizations that raise funds for cancer research. A simple Google search of "organizations that support ovarian cancer research " will give you over 900,000 results. Some of these are large national non-profit organizations with offices and multiple employees with large budgets that support research in addition to other programs such as awareness and legislative advocacy.

But there are also many small, local non-profit organizations throughout the US whose efforts should not go unheralded. They have all volunteer boards, meet in public spaces or around someones dining room table and still manage to make a difference and change the research landscape by supporting established research programs for early detection and treatments as well as young researchers.

Yesterday, I was invited by the GRACEful Hope Foundation to attend their presentation of a check for $30,000 to support ovarian cancer research at Memorial Sloan Kettering Cancer Center. For over 4 years now the GRACEful Hope Foundation lead by the Rocha Family and friends have supported ovarian cancer research to honor the memory of Grace and Erika Rocha.

Another NJ non-profit, Kaleidoscope of Hope Foundation , earlier this year presented grant awards to RACHEL N. GRISHAM, M.D. ,Memorial Sloan Kettering Cancer Center, to support her research on Deciphering the Biologic Predictors of Response to Targeted Therapy in Low Grade Serous Ovarian Cancer ,LILIE LIN, M.D. , University of Pennsylvania,  to support her Pilot Study of a Novel PARP Inhibitor PET Tracer in Ovarian Carcinoma  and continued funding the project of
GEORGE PRETI, Ph.D., Monell Chemical Senses Center,  A Novel Multidisciplinary Approach to Development of an Effective Ovarian Cancer Screening Diagnostic using Volatile Biomarkers. KOH has provided over 2.7 million dollars to support ovarian cancer research in the past 15 years.

Since 2010, The Teal Tea Foundation has supported Dr. Eric A. Ariazi, Fox Chase Cancer Center, Dr. Elyce Cardonick, Cooper Cancer Institute, Dr. Denise Connolly, Fox Chase Cancer Center and Dr. Lorna Rodriguez, Rutgers Cancer Institute of New Jersey.

The Janice Lopez Ovarian Cancer Foundation supports ovarian cancer research through their annual Concert for a Cure.

Two other small non-profit organizations in NJ that support survivors and raise awareness include
Teal Tender Hearts for Ovarian Cancer Cancer Awareness and The Mary Anne Mazanec Ovarian Cancer Foundation


As a 10 year survivor and someone who has benefited from the research supported by these organizations I am thankful for each and every organization that is making a difference in ovarian cancer research.

Dee
Every Day is a Blessing!  

 

Erika's Dream - A GRACEful Hope Walk

I have been busy for much of the month of September and have not been able to take part in many of the local Ovarian Cancer Awareness Month activities. So when Margaret invited me to the GRACEful Hope 1st Annual Walk I jumped at the chance to join her and the Rocha family.

I first met Margaret, Sergio and the rest of GRACEful Hope at their 2nd Annual Benefit in 2012. They invited me to share my story and it was a very emotional experience.( You can read about it here.)  Yesterday, the temperatures were perfect for a walk and it was wonderful to see the walk path lined with teal ribbons and balloons in Warinaco Park, Roselle, NJ.

We had pre-registered so we picked up our gift bags and t-shirts. The bags were filled with info about ovarian cancer and cancer research. After putting on the walk shirt I filled out the" In Suppport of" and "In Memory Signs"and Nick pinned them on my shirt. I walked in Memory of Grace, Erika, Shari, Stella and the ladies of my CINJ support group who died because of a gynecologic cancer. After the welcome speeches by Roselle Mayor Jamal Holley, Assemblywoman Quijano, and a Union County Freeholder Sergio Granados and a moving a capella rendition of the National Anthem, the walk that Erika had dreamed of began.

The path lead you around the park , past the lake, ball fields and playgrounds. I teared-up a few times   during the day, as I finished the walk feeling blessed to still be alive after being in treatment twice for the disease and when they asked for survivors to step forward.  It was wonderful to be able to catch up with other survivors Corinne, Dores, Tina, Jill, Jes and Terry.

GRACEful Hope expected 100-200 people at the event and there were over 500 participants. That is a testament to the wide reach of GRACEful Hope's efforts. Thank you GRACEful Hope for all you do to raise awareness and funds for research. You can find out more about future events by following them on Facebook.

Dee
Every Day is a Blessing!

OC Awareness #23 - GRACEful Hope, Passionate Advocates

Last night my husband and I had the pleasure of attending the 2nd Annual GRACEful Hope Benefit for Ovarian Cancer Research at the Sport Clube Portugues in Newark, NJ.  Over the past year or so I have followed and shared information on my Facebook page about GRACEful Hope events and was honored when they asked me to attend the Benefit and to tell my story.

Before I talk about the event let me give you some background into GRACEful Hope. The Rocha family lost their wife and mother Grace to ovarian cancer in 2008, while their daughter Erika fought her battle with the same disease. They formed GRACEful Hope in memory of Grace and in support of Erika in 2009 with family and friends coming together to enter walks as a team. In 2011, Erika passed away at the age of 20.  But the family did not stop their efforts, no they continue to raise awareness and funds for research they hope will one day lead to a cure.

I have been to many ovarian cancer events from teas to walks to galas. And I have told my story many times in different venues, on TV, in a room full of women, at a walk and press conference, but last night was different. As we entered the Sport Clube I felt welcomed, at home and part of a large extended family. The event included a large family meal complete with overflowing platters of Portuguese food. The food was absolutely delicious. There was music and dancing. It was a celebration of the lives of Erika and Grace and all that  GRACEful hope had accomplished in the past year. And it was an expression of hope. Hope that the funds raised for the Cancer Institute of NJ would get us closer to finding a cure.

I am always a bit nervous before giving a talk but I had practiced and I knew exactly what I wanted to say about my journey, being in a clinical trial at CINJ and the compassionate care Dr Rodriguez and Gibbon provide. So what happened next surprised me. As I talked about my clinical trial experience and the day I heard "There is no evidence of disease". The room cheered. And I had to pause and compose myself. I know my right hand which was holding the microphone was shaking but I continued talking about my recurrence. I talked about the surgery, treatment, the allergic reaction to carboplatin and how I heard "There is no evidence of disease" and the clapping began again. And I could feel my eyes starting to tear up. And I am sure my voice cracked as ended my speech with "I still have neuropathy in my toes, forget things because of chemo-brain , get anxious waiting for blood tests and scan results but the one thing I know for sure is that with my faith , my family and the doctors at CINJ I can face whatever lies ahead."

What an emotional experience for me. Maybe it was because it was the first time I was telling my story in front of my doctors ( who spoke right before me).Or maybe it was because my husband was in the room. Or I know it sounds corny maybe it was because people who I had never met before showed me so much love and gave me so much hope.

Dee
Every Day is a Blessing!