Catching Up On All Things Advocacy

Well, were did the time go? It is over a month since my last blog post. I'm OK and plugging along.

It appears that being home most of the time - trying to reduce my risk of COVID -19 has not meant  less advocacy work. In fact,  I think that I am busier than normal. I had to turn down two projects for November and December so I don't fall behind in projects I have already committed to. 

I had a pretty good September which is Ovarian Cancer Awareness Month. I formed a team to walk for the Kaleidoscope Of Hope Ovarian Cancer Foundation and raise funds for ovarian cancer research, virtually of course. My daughter and niece, joined me as members of team Quarantine Fifteen. I chose that name because I celebrated 15 years as an ovarian cancer survivor this year and 2020 is the year of the COVID-19 quarantine. We raised over $500. I walked my 5K with two other survivors at a park in Allentown, NJ. How I wish we could have been on the boardwalk in Bradley Beach looking out at the ocean.Hoping next year will have us back at the Jersey Shore.

For the first time ever, I was able to attend the OCRA Ovarian Cancer Conference (Sept 29-Oct 2). It was virtual this year due to COVID-19 but I still had a great time and learned new information.  I was so excited to spend some time with my survivor friends. A group of us - many who had been ACOR listserve users - all met one morning of the conference in the virtual lobby to catch up and present the Big Girl Panty award.  

Here are three examples of the excellent presentations from the Conference.

Learning about rare ovarian cancer from Dr  Gershenson

Learning about PARP inhibitors from Dr . Matulonis

Racial Disparities in Ovarian Cancer with Dr Khabele

On October 16th I took part in the online celebration of the Cure Ovarian Cancer Heroes Award. I was so excited to celebrate with two advocates I have know for a number of years and a researcher I had met at the ASCO Annual Meeting.

Andrea is an amazing advocate and survivor helping women through the @SHAREing hot line. This OC survivor is thankful for all she does. Thank you @Herzbuk for mentioning the gyn oncs who mean so much to you. @cure_magazine OC Heros. #gyncsm pic.twitter.com/qOd31Z6hjA

— Dee Sparacio (@womenofteal) October 16, 2020

Congrats Dr Deborah Zajchowski @ClearityFnd honoree at @cure_magazine 's OC Heroes Celebration.I remember the time she took to answer my questions during a poster session at an ASCO meeting a few years ago.Thx Dr Deb for helping women find their best treatment options #gyncsm pic.twitter.com/vPgjV5Qxng

— Dee Sparacio (@womenofteal) October 16, 2020

“No matter when you engage with @RobinSCohen, you quickly discover she is 100% present in the moment with you,” – Susan Leighton of @ocrahope #OvarianCancerHeroes pic.twitter.com/w8uPHT0NjN

— CURE Magazine (@cure_magazine) October 16, 2020

 Congratulations, Andrea, Robin and Dr Deb.

 I rounded out October with two Scientific Review Board meetings, an ASCO Clinical Practice Guideline Committee meeting, a Cancer Community Advocacy Board , a planning meeting for a great November 11th #gyncsm chat on PARP inhibitors and an invitation ( which I accepted) to be on the advisory board of an NCI trial on understanding and reducing racial  disparities in ovarian cancer treatment and survival.  

Over the past few months I have become pretty adept at taking part in discussions on WebX platforms as well as Zoom but I really would love to be able to give some in-person hugs.

Stay well and enjoy the color of the world around you.

Dee

Every Day is a blessing!

Power outages, Goodbyes and Looking Ahead

Where did August go? 

Day 5 - working on power lines.

 

During the first week of the month we had a power outage for five days due to tropical storm Isaias. We had no electric, no internet, no landline, no cable and were missing a number of shingles off the peak of our home. Cell phone use was off and on until they installed a generator on the cell tower not far from our home. We tried to be creative making meals on our gas stove to use up all the frozen food which was thawing. To be safe though on the fifth day we still threw out a large bag of food. We spent time conserving the charge on our phones and were happy to have fully charged power backups at the start of the outage. Cold showers were not fun. But sitting outside at sunset when the fireflies came out was pretty awesome. My grandson made up a song about the fireflies and he added to the song each night. The iPads and computers were off, low on power, but no electric was needed to play a rousing game of  Crazy 8's by camping lantern. 

The second week of August was a busy time playing catch up. We were doing things we could not do during the outage : laundry, food shopping, vacuuming and catching up with online work. I got a chance to prep and participate in the August #gyncsm chat on Endometrial Cancer.

The third week of August was a time to say goodbye to my daughter and grandsons. Due to COVID-19, they traveled to the US in late March from their overseas home. During the time they were here, The international school they attend offered remote learning. So the boys spent 5 days each week ( Sunday - Thursday, due to the time difference) doing school work. I enjoyed helping them with their work, learned to use See-Saw and happily took photos and videos for them to send to their teachers. But we also  had time to play, pick strawberries, cook together, build with Legos, draw and paint. It was tough to see them leave but I am happy they are back home with their Dad.

During the latter part of August, I spoke to ovarian cancer patients as a volunteer with Cancer Hope Network, attended two of my cancer centers online webex Scientific Review Board meetings and also had a zoom call with some ovarian cancer survivors. It was so nice to hear and see these women. They are more than ovarian cancer survivors and advocates, these women are my friends, some for over 10 years.

Today I am looking ahead to next month, National Gynecologic Cancer Awareness Month. I  signed up for the OCRA's Ovarian Cancer National Conference which will be held virtually September 29, 2020 - October 2nd. Past conferences have conflicted with vacations and other events so this conferencewill be my first one and I am very excited to attend.

Christina Lizaso and I are busy planning this month's #gyncsm chat on Rare Gynecologic cancers which will be held at 9pm ET on September 9th on Twitter. Did you know that there are different types of ovarian cancer? Do you know how vulvar, vaginal or GTD are treated? Be sure to check our blog for information on how to take part in Twitter Chats. 

I also registered for this year's virtual Kaleidoscope of Hope Ovarian Cancer Foundation Walk. I have been raising funds for ovarian cancer research by taking part in a KOH walk for over 10 years. Support my efforts with KOH a or find a local ovarian cancer walk to help researchers find a screening test and better treatments for ovarian cancer.

This month threw a few curve balls my way but things in the end all worked out. See you in September!

Dee

Every Day is a Blessing!