Tuesday, July 29, 2014

Clap Along ...

On July 29, 2005 I was diagnosis with Stage IIIB serous epithelial ovarian cancer.Since that day I have had two surgeries, participated in a clinical trial( 3 if you count the ones that used my tumor tissue), 16 chemotherapy treatments, countless blood tests, CT scans and doctor visits.Today, nine years later,  I am especially thankful for the wonderful doctors and nurses at CINJ, for my husband, children, family, friends and for my faith.

So join me today and "Clap Along "and be happy.

Every Day is a Blessing!

Tuesday, July 22, 2014

Elixir Fund Registry- A Patient / Caregivers Wish List

Just about four years ago at a Mercer County Cancer Coalition (now called the Hunterdon/Mercer Chronic Disease Coalitio) meeting I meeting  Meg McQuarrie from the Elixir Fund.

The Elixir Fund "provides comfort and support to cancer patients and their caregivers. "Their goal is to reduce the stress of treatment and provide support to patients and their caregivers so they can take a break from cancer. They get their inspiration from the cancer journey of Meg's brother, Kevin.

Yesterday, Meg and I met to discuss the latest project of the Fund- the Elixir Fund Registry. This project, similar to a bridal registry, is a way for family and friends to provide support ( emotional and physical) to their loved ones who are in treatment as well as their caregivers. Patients and caregivers can make a wish list for things they would love to have or things they would like to do to make their treatment time easier. The items on the list are varied from a  massage, to meals delivered to a patients home, help with putting on makeup, transportation to appointments, yoga classes or it can be a custom wish. Many local businesses have agreed to help with providing the services. The registry will be online and initially will  involve cancer patients/ caregivers who reside in NJ.

The Elixir Fund Registry is ready to be tested and the Fund is looking for people who have experience as a cancer patient, caregiver or health care provider ( such as a nurse or social worker) to test out the site and provide feedback to the Fund so they can insure that the program meets the needs of cancer patients and caregivers. I am so happy to see a patients centered approach to designing the program. Program testing is supported by Eli Lilly.

Meg allowed me to do a test run of the Registry and it is easy to set up and use.

Please contact Meg by calling 800-494-9228 or e-mailing her at  meg@elixirfund.org

Every Day is a Blessing!

Monday, July 7, 2014

For Women like Shari

Many people ask me why I spend so much time advocating for ovarian cancer awareness and funds for research. I'm disease free now. Why don't I just get on with my life.  I learned of another reason why last night.

I first met Shari who was also diagnosed with ovarian cancer and her husband Don at a Kaleidoscope of Hope Fundraiser about 5 years ago. My gyn-onc introduced us. We clicked right away and I learned about The Teal Tea Foundation of which she was president. She was in her forties at the time and I was in my early 50's. Other ovarian cancer events and activities kept us in touch.

When I moved to Hightstown, two towns over from where she lived,  we e-mailed each other and attended a few One Force Meetings and Teal Tea Foundation meetings together. In 2013, I sat at her table at the Teal Tea, which is run annually by the Teal Tea Foundation . Another time she ran a special fundraiser for the Teal Tea at the Alex & Ani store in Princeton and I had a chance to meet her two daughters.

In 2013, the lunches started. First it was at the Americana Diner and then we switched to a tiny restaurant in Cranbury called Molto Bene. Molto Bene let us sit there for hours chatting. Sure we talked "business" - my blog and her role at the Teal Tea Foundation. We lamented that fact that there wasn't a screening test for ovarian cancer and that so many research dollars were going to breast cancer research and not enough to ovarian cancer research. And we talked clinical trials that were available in the NY/NJ/PA area. But we talked about so many different things too.

Shari was a pasty chef and over lunch she told me about the classes she taught and also explained to me the correct way to do some common kitchen procedures like separating the yolk from the white part of the egg. What a laugh we had when I told her I needed to be in her class because I didn't follow her advice and dropped egg shell in my batter filled mixer.

We talked about our families- her two wonderful daughters and my children and grandchildren. I spoke about how difficult it is having children and grandchildren living so far away. And we talked about the colleges her oldest daughter might be interested in visiting.

You see Shari was so much more than just another woman with ovarian cancer she was my friend.

I am very sad that Shari and I will no longer be doing lunches. She passed away on July 6th.

Shari is my reason for continuing to raise awareness and funds for research. I will do it to honor Shari. Please keep Shari and her husband Don and two daughters in your prayers.

Every Day is a Blessing