Wednesday, November 25, 2015


Happy Thanksgiving

I am grateful for
my husband
my children and their spouses
my grandsons
my family - sister, brother-in-laws, sister-in-laws, nieces, nephews, cousins,
my dog and my grandpups and grandkittens
my friends near and far
followers of this blog

May you have blessings in abundance.

Every Day is a Blessing

Monday, November 23, 2015

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.

Every Day is a Blessing!  


Saturday, November 7, 2015

Back on the Banks Sharing My Story

Last week, I was invited to speak to the American Medical Student Association (AMSA) chapter at Rutgers University. I drove up to the Busch Campus of Rutgers and parked across the street from the Medical School where the talk was taking place.

I was so pleased to be back on the Banks of the Raritan since both my undergraduate and graduate degrees were from Rutgers.

As the students slowly filtered into the auditorium I spoke to KN, a senior and my contact person for the group, about her plans for a career in medicine. Instead of standing at the podium and speaking as if I was lecturing I decided to sit in a chair at a table in the front of the room. It felt more comfortable sharing my story in that way. 

I then began telling my story, interspersing stats and information about symptoms and the importance of having surgery done by a gynecologic oncologist with how I felt when first diagnosed. I shared the hope my gyn oncs provided by simply saying they will do everything to make me well. I thought I would talk about 20 minutes but it ended up being closer to 35 minutes. As I finished my talk I told the future physicians that they should take the time to get to know their patients, and ask them what their goals for the future are. I also told them that they should to be ready to work with others - pharmacists, social workers, nurses to provide the best care for their patients. 

When  I finished my presentation I asked if anyone had questions. One student asked if I ever got upset or angry with my doctors. I told them the only time I ever got upset was when I had to wait for my CT results. I told them of the time when I was in treatment for my recurrence. I had tried everything to stay calm but eventually ended up calling the social worker and asked her to intervene to get me my results quicker. Waiting for results is difficult but it has become a little easier now that  results are posted quickly to health records which can be accessed through a patient portal. 

As I gathered up the extra symptom bookmarks and CDC booklets I had brought with me, a few students came up to chat. One young man talked to me about the importance of nutrition for good health. Then a young lady told me she was planning to become a OB/GYN but will now consider becoming a Gynecologic Oncologist after hearing about my relationship with my gyn oncs. That comment made my night. Maybe in 10 years or so I will be reading about this young lady starting her career as new gyn onc in NJ.

Every Day is a Blessing

Monday, October 26, 2015

Cancer Patients on Twitter: A Patient Summit Presentation

Last week Alicia Staley and I presented "Building Community in 140 Characters"at the Eye for Pharma Patient Summit 2015 in Philadelphia. 

Before we talked about the #bcsm and #gyncsm communities we gave some background on Twitter, hashtags, The Health Hashtag Project and research on twitter communities.

Did you know that in June'15:
  • there were 316 Million monthly Twitter users?
  • there were 500 Million tweets sent per day? 
  • 19% of all adults are  on Twitter?

Did you know that the Symplur Healthcare Hashtag Project ( Sept 2015) :
  • includes almost 8000 healthcare hashtags?
  • covers over 15,000 healthcare topics? 

Did you know that patients have been the driving force behind the cancer hashtags and chats? 
Examples of patient let communities include: 
#BCSM-breast cancer social media
#BTSM-brain cancer social media
#ayacsm- adolescent & young adult cancer social media
#gyncsm-gynecologic cancer social media
#lcsm-lung cancer social media 
#panscm-pancreatic cancer social media  #mmsm-multiple myeloma social media
We also presented information from the poster  Dr Matthew Katz, et al  presented at the ASCO 2015 Annual Meeting.
Disease Specific Hashtags for Online Communication about Cancer Care concluded that: 
Hashtags can organize online conversations about health
The use of organized, cancer-specific hashtags on Twitter by a variety of stakeholders in cancer care is not only possible but has grown
Use of the Cancer Tag Ontology (CTO) indicates the potential value of online interaction around specific diseases
Further study is needed to determine whether the CTO: Improves access to accurate information or clinically relevant patient outcomes

Alicia Staley presented information about the #BCSM community including this study published in the Journal of Medical Internet Research which found that 67% of the women who initially reported high anxiety before the chat reported no or low anxiety after participating.

Twitter Social Media is an Effective Tool for Breast Cancer Patient Education and Support: Patient-Reported Outcomes by Survey

They concluded that "breast cancer patients' perceived knowledge increases and their anxiety decreases by participating in a Twitter Social Media support group.  

I presented information about the #gyncsm community including what we learned from our 2014 community survey.

Why did you participate?

To chat with others with same interests but from different perspectives

learn, share, support

to help the community of survivors
After participating in the chat:

41% of the participants made a change in your personal or professional routine/practice

37% of the participants advocated for yourself or another

54% of the participants used or refer someone to one of the resources mentioned in a chat or listed on our blog  

 In conclusion we noted that: 

There are active, engaged patients who are helping each other but many also want to be at the table in making changes in healthcare. Come find us on Twitter and listen.

Every Day is a Blessing!

Wednesday, October 21, 2015

Gynecologic Cancer Symposium: Striving for a Healthier Tomorrow, Today

On November 19, 2015 Striving for a Healthier Tomorrow, Today a gynecologic cancer symposium will take place at Mercer County Community College in West Windsor, NJ. 

The Symposium is open to health care providers, nurses, survivors, caregivers  and community members.  This activity has been submitted for approval to provide 5 CEU Credits. 

Medical experts will present discussions on:
  • Research and newest developments 
  • Cancer prevention and detection 
  • Genetic determinants, risk assessment and management
  • Gynecologic cancer impact on sexuality and intimacy 
  • Immunotherapy, diagnosis and treatment, improved risk predictors
  • Patient centered clinical trials
  • A panelist of gynecologic cancer survivors will discuss symptom awareness; personal health choices, fear of recurrence, post-treatment, and life beyond cancer.

Thursday, November 19th 2015 from 8:00 am - 3:30 pm 
The Conference Center At Mercer CollegeMercer County Community College
1200 Old Trenton Rd
West Windsor Township, NJ 08550

How to register:
Online at:

After looking at the agenda there will be a wealth of information shared that day. 

Every Day is a Blessing

Sunday, October 18, 2015

Supporting Those Diagnosed with Cancer - Cancer Hope Network Chrysalis Gala

Last night at Cancer Hope Network's (CHN) Chrysalis Gala, I had the honor of telling my story as an ovarian cancer survivor and a CHN support volunteer . Cancer Hope Network provides one-on-one peer phone support for newly diagnosed or recurrent cancer patients and their caregivers. I have been a support volunteer for over seven years now. Last night at the Hanover Marriott many of CHN's supporters of the past 30+ years were present to celebrate the support provided and to raise funds to continue the support they provide to cancer patients.

Below are the main points I shared with the audience.

2005 started out as a pretty good year. I was looking forward to  celebrating my 50th birthday at DisneyWorld with family and friends -12 in all. In late May during my annual visit with my gynecologist I mentioned a pain I had on the left side of my abdomen. In early June after a transvaginal ultrasound the pain got worse and I ended up in the ER. After an  MRI  I learned my ovaries were enlarged. I was quickly referred to the gynecologic oncologists at the Rutgers Cancer Institute of NJ. 

On July 29th one month after my birthday my world changed. I woke up from surgery and to learn I had stage 3B ovarian cancer. I went into that surgery knowing there was a chance it could ovarian cancer but up to that point I had been more fearful of being diagnosed with breast cancer. My sister passed away from breast cancer at the age of 47.

2 weeks after that major debulking surgery. I started chemotherapy. I chose to be part of a clinical trial. The trial added selenium to the standard of care - carboplatin and taxol. It was tough loosing my hair and developing neuropathy but what I was most upset about was the fact that I had not met one other woman with ovarian cancer. What made it worse - any time I mentioned ovarian cancer the response was – Oh Gilda Radner  who played Roseanne Roseannadanna on Sat Night live have ovarian cancer. Yes– she had that disease. But she didn’t live
I also knew the statistics about women diagnosed with late stage ovarian cancer. Only 30% lived 5 years. I wanted to be in that 30% and I needed to talk to someone who had the disease and lived.

When I saw a brochure for Cancer Hope Network in the waiting room of my gynecologic oncologist’s I picked it up and brought it home. I hesitated at first to call. At the time I wasn’t too keen on calling anyone and talking about ovarian cancer. But one afternoon as I laid in bed too tired to get up I went ahead and called. 

I told the person who answered the phone that I just needed to talk to someone who had ovarian cancer and lived. She took all my information and said she would call back when she had a match. The very next day she called and said she could connect me right then and there with a volunteer named Judy. I spent the next half hour talking to a women diagnosed with stage 3b OC, she lived in NJ, she had the same surgery and chemotherapy ,her son worked at the college my son was attending, and even better Judy was a 5 year survivor. It was wonderful. I was not alone. This meant I could survive too!

When I was out of treatment one year I called Cancer Hope Network and said I wanted to be one of their support volunteers. I did the training and within a week or two I was talking to other women with ovarian cancer. I did that until I recurred on my liver and spleen in 2008 and had to have surgery and more chemotherapy I had to take a break. But once treatment was done I was back on the phone able to offer a perspective of being a survivor of recurrent ovarian cancer. I have been volunteering ever since.

I have spoken to women from NY, Florida, California, Indiana and Kentucky just to name a few. I have spoken to women treated in the top cancer centers in the country and those going to small community cancer centers or their local oncologists. I have talked to women who are a short ride from their doctor’s offices and infusion centers.  And also women who drove eight hours or took a plane and stayed overnight at  hotels when they had treatment. They did all this to get their life saving treatments.

There were women who went to in person support groups and others that took part in online groups. But each and every one of them wanted to talk one –on –one with another survivor who understood. At some point in most of the conversations I have had after I have say  "I felt that way too" the reply has always been the same " thank goodness I thought it was just me."

Thank you Cancer Hope Network for allowing me to provide hope and to give back to other women the hope and support you gave to me.   

I look forward to continuing to volunteer with CHN and to support women diagnosed with ovarian cancer for many years to come.

Every Day is a Blessing! Blessed to have found CHN when I was initially diagnosed.

Thursday, October 1, 2015

It Is More Than Pink and Teal

It is about research.

In October, I see posts online from women diagnosed with ovarian cancer and other gynecologic cancers complaining and peeved about being surrounded by pink ribbons - on TV , in stores, on shirts, etc. Even women who have breast cancer write about how they see pink ribbons on items that appear to just be a way to sell products. They note that the  percentage of money earned from these products actually going to an organization is small.There are other complaints about a large breast cancer non-profit and how so much of the money raised doesn't go to research. Women with metastatic breast cancer are asking to be "seen and heard".  They want a greater amount of funds used for metastatic breast cancer research. I can understand why each person complaining or asking for recognition of ovarian cancer feels the way they do.  And believe me I have my share of teal shirts , earrings, etc and a few pink things too.  In October 2011, I even wrote a post about the "pinking" of the NFL.

My friend Christina and co-moderator of the #gyncsm chat said this on twitter.


So true. But what should that action be?

My life has been impacted by cancer in many ways in addition to my ovarian cancer diagnosis. My sister at the age of 42 was diagnosed with breast cancer and had a mastectomy and chemotherapy. She had a bone marrow transplant when her cancer metastasized. She passed away five years later. It has been twenty years since her passing.  And metastatic breast cancer continues to kill women - as does ovarian cancer in the ten years since my diagnosis.

Why is that? Cancer is a very complex disease. After attending medical conferences and listening to researchers I know that.  But how does spending money on items that are pink or teal for that matter make a difference?So the next time you make a donation to an organization or buy a product check out how much of the dollars raised actually goes to research.

Let's spend money on research. Because  the only way we will be able to understand cancer - breast, ovarian, kidney, lung, pancreatic   is through research.

What will you do to support cancer research?

Every Day is a Blessing!