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.


Anonymous said...

It was great to read about your strength in dealing with cancer and the importance that support played in helping you get through it. Thank you for sharing!

I am also currently running a blog which hopes to share the stories of gynaecological cancer survivors and celebrate positive stories. If you have time, have a look at it!

Thanks again!

HD - gynaewarriors

Dee said...

Thank you for your kinds words.

I have looked at your blog and like the mix of stories and information. I hope it is ok to add your blog to my listly list.

I see you are posting in Australia/New Zealand. I visited Perth two years ago and loved the area and people. So friendly and helpful.


Anonymous said...

Thank you that would be great!