Sunday, August 24, 2014

205 years of Survivorship

205 Years!

That is how many years of ovarian cancer survivorship was present at a luncheon at the Crowne Plaza in King of Prussia, Pennsylvania yesterday.

Since the early 2000's,  a group of ovarian cancer survivors who met online (ACOR, Inspire, Facebook, Smart Patients) or at the OCNA conference,  gathered together in one of the women's home town for a fun weekend get together. The group has met in a variety of locations from Canada, to Missouri, to Kentucky, and Maryland.  This year when I learned the get together was in Pennsylvania  a little over an hour or so from my house I knew I had to attend and meet so many woman I admire.

So off I drove yesterday morning under grey and stormy clouds to have lunch with my teal sisters at the Annual Ovarian Cancer Survivor Friends Get Together. The Luncheon was sponsored by the Sandy Rollman Ovarian Cancer Foundation as part of their mission to bring survivors together.  Robin Cohen CEO and co-founder of the Foundation was there to welcome all the women to the luncheon and the Philly area.The food offered a taste of Philly from Hoagies to Cheese Steak Sandwiches to Tastycakes.  Thank you Robin and SROCF .

The food was delicious but the best part of this day was meeting so many wonderful survivors in person. They came from near - Pennsylvania and New Jersey and far - Maryland, Kentucky and Illinois and Kansas.  There were survivors who have helped to raise awareness of the disease in unique ways -Teal Toes, acted as patient reviewers of DOD grants, presented posters at AACR and taught medical students through Survivors Teaching Students. Most of the women have been there online offering support and prayers for others diagnosed with the disease. As we ate we talked about hair loss, neuropathy, clinical trials and tumor storage. We questioned what makes survivors of 5+ years different from other women diagnosed with the disease. We laughed.  And as we looked at photos of past get togethers we teared up remembering women who were no longer with us. In that room in PA were some of the most active and inspiring ovarian cancer e-patients in the country.

Before the day ended I got to do something I have wanted to do for a long time. I went up to Helen, a 20+ year survivor of ovarian cancer, gave her a hug and told her "Thank- you"for being there for me when I was in treatment. She responded to the very first post I wrote on the ACOR listserv in 2005.

I would never have been able to say thank you in person without the efforts of Anna Marie and Yi who helped to organize the event. Thanks Yi and Anna Marie.

I can't wait to see all of you next year.

Every Day is a Blessing !!!
And I am truly blessed to have met Annamarie, Annie, Barbara, Carey, Carol, Christine,  Cindy, Cynthia, Helen, Jan, Judith, Nan, Pat, Susan,Teresa, Terri, Yi, Yi from PA

Wednesday, August 6, 2014

I’m Gearing up for Medicine X and You Should Too

In less than a month I will be flying out to California to attend the Stanford Medicine X (MedX) conference as one of this year's e-patient scholar delegates. (You can find a list of this year’s e-patient delegates here.) I so happy to be taking part in the MedX | IDEO Design Challenge.

I can almost see your faces as you read this. You are thinking, “What is an e-patient? What is Med X?” Why do you want to attend?”

What is an e-patient?
ePatient (e!pa!tient/e‘p"SH#nt/): 1. A health consumer who uses the Internet to gather information about a medical condition of particular interest to them, and who use electronic communication tools (including Web 2.0 tools) in coping with medical conditions. 2. Friends and family members (e-Caregivers) who go online on behalf of patients. (Stanford MedicineX definition) 
I wrote about being an e-patient in a February blog post

What is MedX ? Who is involved with MedX?
 Medicine X is a catalyst for innovative ideas about the future of medicine, healthcare, and wellness. The initiative explores how emerging technologies will advance medical practice, improve health outcomes, and empower patients to be active participants in their own care. The “X” is meant to encourage thinking beyond numbers and trends—it represents the infinite possibilities for current and future information technologies to improve health and well-being.”

Creativity combined with healthcare. How amazing is that? Pretty amazing I think and one of the main reasons I applied to be an e-patient delegate this year. The MedX conference is an academic conference but it is designed for everyone to participate in.  You will find researchers, physicians, mental health-care providers, designers, engineers, technologists, and patients sitting side-by-side learning, creating and sharing their stories and ideas.  I am so excited that the patient voice is being included.

Those stories and ideas will be shared with others through Twitter, Facebook and participant blogs. But you can attend this conference virtually and not miss any of the keynote speeches, etc  by registering for free Global Access. You can register for free at

What is the IDEO Challenge?
On September 4th, Stanford Medicine X and the design firm, IDEO will bring together patients, designers, researchers, and health-care providers to collaborate in teams to improve patient care.  I have been learning about the design process and for the past few days I have been developing problem statements that my team can work on the day of the Challenge.  I will be focusing on problems that patients with cancer face but the ideas can be applied to other chronic illnesses as well. 

When and Where is MedX? The Stanford Medicine X conference is held September  5-7, 2014 in Palo Alto, California.  The IDEO Challenge is held the day before the conference.

Why do I want to attend MedX? I have been an ovarian cancer advocate for nine years. I've written about my journey with the disease. I spoken about ovarian cancer symptoms and blogged about research into better treatments and an early detection test. I’ve co-moderated a monthly tweet chat (#gyncsm) for gynecologic cancer survivors. But it has been years since I worked as an engineer and been personally involved with the creative research and design process. MedX is the perfect place to blend advocacy with innovation and I can’t wait to be part of the conference and meet other e-patients.

I hope many of you will join me virtually it should be an  incredible experience. 


Every Day is a Blessing !

Monday, August 4, 2014

It Is Worth It

 Last week, I turned to my husband and said “I’m so happy I am having lunch with M today. It is great to have a friend who is not an ovarian cancer survivor.  Hopefully we can be friends a long time. “ Then I got teary and said “I am so tired of making friends and losing them to cancer” He gave me a big hug, I took a deep breathe and walked out to the car to meet M.

On that day I was thinking of my friend S. W. whose funeral I attended the week before. I was thinking of her husband and her two teenage daughters. And I was feeling sad for the friend that I had lost. And I was a bit angry too.  I started to wonder if it was worth it spending time working on friendships that are ending so quickly.

S.W.  and I  were more than two women who had ovarian cancer and were treated by the same gynecologic oncologist.  Sure that is how we met but with time and effort a deep friendship evolved. It wasn’t easy. We both had family and advocacy commitments. She had work commitments and treatments. Yet we still made a point of checking in with each other on Facebook.  And we made a effort to carve out time to have lunch with each other. We worried about each other during super storm Sandy.  We celebrated the new car she bought and she shared with me how she hoped she would put lots of miles on that car.  We talked about the college tours she was taking with her daughter and how wonderful our husbands were. We were more than just two women with cancer. We were friends.

Then I started to think about the friends whose lives were lost due to ovarian cancer. There was Sharon who had the best sense of humor. She would have made a great stand up comedian. And then there was Rita. We used to stand outside after our support group and discuss college football never realizing how much time had passed.  I would meet Pam for dinner before our support group and she shared her love of Jimmy Buffet and traveling. One year we both went on cruises to Alaska and when she came back she gave me the best tips on what to see and clothes to bring.  There was Kim who loved wrestling. I still laugh when Fandago shows up for a WWE match on TV as I remember how she loved how he pronounces his name -  “Faaaan dangggggg OOOOOO”.  There was Deidre who helped me decorate a table for a Tea. I never asked her to help but she just jumped right in and brought things to add to the design.  I could go on and tell you about Gail, Ellen, Denise, Cindy, Jayne , Nicole , Courtney and Shirley. All of these women were special to me. They were special for their faith, courage and talents. I am not sure if our paths would have crossed if it were not for ovarian cancer .

One of the most difficult parts of being a cancer survivor is losing others diagnosed with the same disease. I‘ll be honest with you it hurts and it makes you very aware of your own mortality. But when I stop and think I realize that my life has been made richer because of these friendships.

Dee Sparacio
Every Day is a Blessing!