Tuesday, May 22, 2018

Another Graduation!

When telling my story on this blog, I tend to put life events in relationship to my cancer diagnosis.

I was first diagnosed right before my son, Matthew, returned to college for his sophomore year.   My husband drove him back to Virginia a few weeks after my surgery. This is one of my favorite photos from when I was in treatment. My daughter drove me to one of his crew meets. 

In the spring of 2008, I was there to see him receive his Bachelor of Arts degree. I wasn't sure back in 2005 that I would be there.

Five months after his graduation in 2008,  I had a recurrence which required another surgery and chemotherapy. Two years later in  2010,  I returned to campus to see him receive his Master of Arts degree.


On May 7th of this year my family celebrated once again. My son received his PhD in History. I was very emotional when I heard them say, " Doctor " as he received his hood.

It is hard to express how grateful I am to all my gyn oncs and nurses who got me to each and every graduation and to my family and friends for their unending support.  Seeing him reach his goal was amazing. And I could not be prouder. 

Every Day is a Blessing!

Saturday, May 5, 2018

The Needs of Women with Ovarian Cancer


As you know, I am the co-founder and co-moderator of the #gyncsm Community on Twitter. Christina and I founded the community in 2013 for those impacted by gynecologic cancers and those who care for them.

In early 2016 we began working with Teresa Hagan Thomas and other researchers to better understand the needs of women diagnosed with ovarian cancer . We discussed those needs during the #gyncsm monthly chat, Re-envisioning Ovarian Cancer Survivorship in April 2016.

I am pleased that on April 26, 2018, "The Needs of Women Treated for Ovarian Cancer: Results From a #gyncsm Twitter Chat" was published  in the The Journal of Patient-Centered Research and Review. We are honored to be involved in this research. 

Follow this link to read the entire article.

Every Day is a Blessing! 

Friday, April 13, 2018

I Lived It

The other day in the car I heard the song "I Lived It" by Blake Shelton.

...Oh, you think I'm talking crazy
In a different language you might not understand
Oh, that's alright
That's just the kind of life that made me who I am...

He is talking about his time growing up but it spoke to me too- it related to how I felt- and sometimes still feel - when I talk about my experience with cancer, let alone ovarian cancer, to those who have never had it. I know my life would’ve been different if I hadn’t had ovarian cancer, but I did, and this is the life I have now. I’ve written a book , lent my voice as a patient advocate, participated in academic papers as an author, attended and spoken at conferences- these are things I would never have had an opportunity to do. Now, I am invited to join a new project for women diagnosed with ovarian cancer, that will include building a community of women diagnosed with the disease to support and learn from each other.

The Ovarian Cancer Registry was started by Larry Maxwell, INOVA Gynecology Department as part of the DOD Gynecology Cancer Center of Excellence. Women with a history of ovarian, peritoneal, or tubal cancer are invited to join and contribute data through the Registry which is a type of clinical trial. Women in the study will also be surveyed for ongoing quality of life issues and have the opportunity to learn about new studies and new initiatives. With our combined voice, I am hopeful we will be invited to participate in formative work- to guide future research questions, clinical trials, and the education that we as survivors need and want. . To learn more about the goals of the registry visit https://ovcaregistry.endgyncancer.com/about/ to register or read the consent form please visit https://ovcaregistry.endgyncancer.com/join/. I am pleased to join this initiative as a blogger along with Annie Ellis, Teri Woodhull, Susan Leighton, and Kristina Abalos.

The Registry, is separate from, but supports Globe-athon, the global effort to end gynecologic cancers. Globe-athon hopes "to increase awareness of women’s cancer, address disparities, and transcend barriers (i.e. ethnic, racial political, geographic, financial, cultural and religious) through educational outreach, global community engagement, and by advancing research." Part of building this community is having ovarian cancer survivors share their experience and thoughts. Our blogs will be housed here; check this page to read the blogs that are posted to date.

In the future women will also have the opportunity to have more private conversations through a partnership between the Registry, Globe-athon and Smart Patients, an online community for patients and families affected by a variety of illnesses. I'll update you all when that partnership begins.

We have so much to offer each other and I look forward to being a part of this new world wide community of women.

Every Day is a Blessing!

Wednesday, March 28, 2018

#SGOmtg Twitter Highlights - Research Highlights Monday, March 26, 2018

Monday March 26th was another day of important presentations at the SGO Annual meeting. Some results may change treatment protocols going forward.

Here are the tweets I found of most importance.

Cervical Cancer - Minimally invasive surgery *this one may change how early cervical cancer is treated

Ovarian Cancer Debulking Surgery

Ovarian Cancer - Niraparib and Pembrolizumab
Ovarian Cancer - Olaparib and Durvalumab

 Ovarian Cancer- Metastasis and DDR2 experssion

Palliative care
Survivorship / BMI and Risk

Lay navigation

Granulosa Cell tumors

Thanks Dr Dood, Erica Bednar, Annie Ellis, Ali Saiz, Alpa Nick, Rick Boulay, Erin Stevens and Kathleen Schmeler for sharing on Twitter during the meeting.

Every Day is a Blessing!

Tuesday, March 27, 2018

#SGOmtg Twitter Highlights - Research Highlights Sunday March 25, 2018

Sunday was another busy day of information sharing at the SGO Annual Meeting in New Orleans.
Here are the topics that caught my eye while following the #SGOmtg hashtag.

Ovarian Cancer Maintenance Rucaparib - NOVA Study
Ovarian Cancer - Niraparib and Cost effectiveness
Ovarian Cancer - Parp inhibitor and BRCA status

Endometrial Cancer GOG 86 P Predictive biomarkers of endometrial cancer

Endometrial Cancer PORTEC3

Endometrial - GOG 249

Cervical Cancer - chemo /radiation

Thank you to Rick Boulay,MD, Jolyn Taylor, Don S Dizon, Douglas Levine MD,  Shannon Westin and Deanna Teoh, M.D. for tweeting using the #SGOmtg hashtag so those of us following from a distance can learn.

Every Day is a Blessing!

Monday, March 26, 2018

#SGOmtg Twitter Highlights - Research Highlights Saturday March 24, 2018

Here are a few highlights from the  SGO meeting from Saturday March 24, 2018. Tweets of physicians and advocates I follow concentrated on:








 It was exciting for me to see an advocate - Meg Gaines - present at the meeting. We are making progress.
Thank you SGO, Amir Jazaeri, Rick Boulay MD, Kian Behbakht, Nicole D. Fleming MD, Shannon Westin, Erin Stevens, Joshua Garrett Cohen,  and Annie Ellis for tweeting from the meeting.

Every Day is a Blessing!

Sunday, March 25, 2018

#SGOmtg Twitter Highlights - OCHeroes, Friday March 23, 2018

I was not able to attend the SGO Annual Meeting in New Orleans this year but I am following the meeting via Twitter.

Friday night was a special night because at a gala the first ever  OCHeroes award for those who increase awareness and advance research and education of ovarian cancer was presented by Cure Media Group and  sponsor Tesaro. This year the awards went to Laurel Rice, M.D, Carolyn Berson, RN, MSN, Susan Leighton, Sue Friedman, DVM. 

The Cure article on the event may be found here.

Here are some Tweets from the event.

So good to see this amazing group of women honored for their dedication to research and finding a cure.

Check back over the next few days for more Twitter Highlights from the meetings sessions on March 24th and 25th.  

Every Day is a Blessing!