We the Patients - A Must Read

Background: When I heard that fellow advocate, Matthew Zachary wrote a book about navigating our healthcare system and patient advocacy, I knew I needed to read it. I have known Matt since the mid-2000's. We connected through the LiveSTRONG Summits and LiveSTRONG Hill Day ( which he mentioned in his book) . He has been outspoken and a driving force behind changes in health care for AYA's and other cancer groups and an influencer of cancer advocates through the years. 

We the Patients is a must read for patients, advocates oncologists , health center administrators and dare I say every Congressman and Senator ! The book provides the history of the healthcare system in the US- the good, the bad, and the ugly. I have witnessed some of the ugly that has occurred through the past 20 yearsyears. 

Matt's diagnosis with a brain tumor is the thread between the chapters. Some of the topics he discusses includes the ACA, the insurance industry, denials of care, cancer debt and the change in survivorship care.  He highlights the work of advocates such as Maimah Karmo,  and Alli Ward,  physicians,  Dr Pat Ganz and Dr Harold Freeman to name a few and organizations such as Cancer Nation, LiveSTRONG whose work has helped improve conditions for cancer survivors nationwide. He stresses how we can and need to be the voice of change.  Hill days are not enough. We need to share our stories, be engaged in policy and vote. 

"I never set out to be a cancer advocate/mouthpiece/champion/ rabble-rouser but that is exactly where I ended up. " We all should be thankful that Matt has been exactly that. This book can make a difference in every cancer patient’s , caregivers and policymakers life.  

If you want to buy a copy on Amazon, please visit https://tinyurl.com/a84npsxv

Dee

Every Day is a Blessing!  

Prepping for ASCO 2023

The  ASCO Annual meeting begins two weeks from today! This year I will attend virtually. I'll miss interacting with so many amazing researchers and getting to network with some outstanding advocates in the Advocate Lounge. 

You will catch me tweeting from the Live sessions and retweeting attendee's tweets for those sessions which are On Demand. Once the On Demand sessions are over they will become available for me to watch online so I can tweet or summarize them on this blog.  

Be sure to follow #gyncsm, #ASCO23 and ASCO Featured Voices, to be announced shortly by ASCO.

Since I am registered, I was able to set up an agenda using the Annual Meeting Program Guide https://meetings.asco.org/meetings/2023-asco-annual-meeting/299/program-guide.

 Here is my schedule so far: 

Friday 

 

Saturday 

 

Sunday

 

Monday 

 

There are also some sessions that are not specifically about gynecologic cancer that I've added to my agenda. 

On Demand session Improving Cancer Outcomes by Addressing Social Determinants of Health

On Demand Developing Sustainable Cancer and Aging Programs

On Demand Poster Discussion -Prevention, Reduction and Hereditary Cancer

There are a number of published abstracts/ articles in the ASCO 2023 Educational Book, which you can view at https://ascopubs.org/toc/edbk/current . You might want to check out  (e10035)  Patient Advocates and Researchers as Partners in Cancer Research: A Winning Combination if you are an advocate or researcher wanting to engage advocates in your research.

Be sure to check back during and after the meeting for blog posts on the topics / sessions I mentioned above. 

Are you an advocate who is presenting or on a panel? Let me know so I can be sure to watch. 

Dee 

Every Day is a Blessing! 

Hello 2023!

As I begin 2023, I have hope for the future- for my health, my family and my advocacy. 

As many of you know, I begin each year with a few aspirations.

I have a bucket list that includes visiting all 50 states. I have 16 to go but the one that has been on my aspiration list since 2015 is Maine. It is the  only state I have not visited east of the Mississippi. I would like to visit the Wyeth museum, Acadia national park and of course some light houses. 

I aspire to continue to exercise - Jazzercise, yoga and this year bike riding. My friend gave me one of her extra bikes last fall. I've only ridden three times since then but look forward to getting out and riding around my town when the weather is nice this year. 

I aspire to do more art work. I'll continue working in watercolors and I'll add Barn Quilts. I've been following a group of Barn Quilters on Facebook and just love what they are creating.  I made small wood quilt ornaments for my friends for Christmas this year

 

 and would like to try larger 1' x1' or maybe even larger 3' x3' paintings.

When it comes to my advocacy work I already am registered for the SGO meeting this spring. Let me know if you are attending. Big news is that an abstract Annie Ellis, ovarian cancer survivor and advocate, and I submitted has been accepted for presentation. This is really exciting! I also was nominated and submitted my application for a task force position and will let you know if I am chosen. 

There may be some advocacy activities that I will cut back on as I spend more time with my grandsons and kids but you will continue to find me chatting along with Christina Lizaso as we take the #gyncsm ( Gyn Cancer Social Media) community on Twitter to every other month chats at 8pm ET. See you on January 11 when we chat about "Survivorship".  Or check out what we had done in the past on our blog- http://gyncsm.blogspot.com/

Wishing you all good health , love and friendship in the year ahead.

Dee

Every Day is a Blessing!

 

 

 

  

Powell-Drescher Foundation - Ovarian Cancer Research, Advocacy and Education

A few weeks ago I had the pleasure of having a zoom call with Sachia Powell. Sachia is an ovarian cancer survivor, advocate and founder of the the Powell-Drescher Foundation www.powelldrescher.org. We discussed the foundation she founded with Dr Drescher and a number of advocacy and education ideas. Here are two opportunities coming up for advocates.

The Powell-Drescher Foundation is hosting a free Zoom presentation on November 20, 2022, to provide information about research advocacy.  During the Zoom presentation, ovarian cancer researcher Dr. Kristin Anderson will provide information about how to navigate a research conference, as well as details about the AACR’s Scientist-Survivor Program (SSP).  Ovarian cancer survivor/research advocate Annie Ellis will share her experience with the SSP as well as her insights as an experienced research advocate.   To apply to attend the presentation click here. 

 

Along with that education program the organization will provide details about their new program an opportunity for an advocate to attend the American Association for Cancer Research (AACR) Annual Conference in Orlando in April 2023.To learn more or apply click here. The deadline is December 31,2022. 

You can read more about the organization on their website:  www.powelldrescher.org or follow  them at  @powelldrescher on Instagram  and Facebook, and @powerovarian on Twitter. 

 

 

Dee

 

Every Day is a Blessing! 

 

Advocates Making a Difference

This week three women showed us all how to be advocates. One woman had her article published in a medical journal and two others shared their stories during a Facebook Live presentation. It makes me so happy to see ovarian cancer advocates highlight their experience in ways not available when I was first diagnosed.

Christine "Cissy" White, an ovarian cancer survivor has participated in a number of #gyncsm chats and is an active ovarian cancer advocate on Twitter and other social media platforms. She was diagnosed in 2019 and wrote the Clinical Trial Treatment Train for the NEJM's Evidence Patient Platform. It was published on August 23, 2022.  https://evidence.nejm.org/doi/10.1056/EVIDpp2200198

The article is an honest look at what it is like participating in a clinical trial. Cissy took part in the ATHENA trial and a trial of REGN4018 alone or in combo with Cemiplimab. She faces decisions many women diagnosed with recurrent ovarian cancer face daily.  Those who conduct and design trials should read and consider experiences like hers when working with patients.

Ovarian cancer survivors and advocates, Kimberly D. Richardson and Kimberly Simmons Emory share their stories and experience with cancer in a Foundation for Women's Cancer Facebook/ Zoom discussion with gynecologic oncologist Dineo Khabele. Dr Khabele joined the #gyncsm community in 2021 to chat about Disparities in Gyn Cancer Diagnosis and Treatment.  Kimberly Richardson, a 10 year survivor,  joined the #gyncsm community in 2020 and shared how to Read a Scientific Poster. I met Kimberly Emory, a 16 year survivor, in 2017 during a Patient Leadership Council meeting in Dallas in 2017. 

You may watch  How to Be Your Best Self-Advocate at https://www.facebook.com/100064784164039/videos/1469632956884193. Take the time to listen to this discussion which includes symptom awareness, communication with your health care provider, genetic testing,  risk, etc.  What can we do raise awareness of ovarian cancer and offer support to women of color?

Thank you Cissy and the "Kim Squared " for everything you do to raise awareness and support women diagnosed with ovarian cancer. 

Dee 

Every Day is a Blessing!

Thinking about Rest

Life has gotten busy the past few weeks and I realized that I have not posted to this blog in way too long.

Another survivor, Christine "Cissy" White, shared a blog post she wrote on LinkedIn using a writing prompt from Laura Davis. I loved Cissy's post. I thought maybe that was just what I need, a prompt to spark my writing.I decided to use the same prompt Cissy used.

 

Rest is not always easy.

At the beginning of each year I look at what advocacy activities I have planned for the year ahead and decide what large projects I would continue with. I ask myself if the activity brings me joy.  I know I sound like Marie Kondo and her advice about getting rid of clutter. For me that process worked well until recently. I started receiving special requests to help with clinical trial design, be a part of an advisory board and  review grants. As a cancer research advocate in what is considered a rare cancer,  I felt compelled to be involved in these opportunities. If I said "No" I would miss out on sharing my story and raising the issues that are important for women with gynecologic cancers. Was I letting myself and those who lost their lives to ovarian cancer down by not participating?  

Since Covid many events, symposiums, presentations were held virtually.The fact that travel costs were non-existent took funding my trips out of the decision making process. This just made things harder since I could take part from home. I knew I couldn't say yes to everything or I would burn out. I needed to look after myself.

Beginning in 2022, I started blocking out weeks at a time for family and friends.  I learned to turn down opportunities. But I did more than that. I decided to look at these opportunities as not opportunities for myself but for others. Every time I turned down an opportunity, I recommended another advocate or survivor who could step into that role. It is important that we advocates support each other. Now I can really rest and know that other patient/survivor voices are being heard.

When I rest... I feel calmer. I have more energy to do the advocacy work I am passionate about and I have time for my family and hobbies. 

Sometimes when I rest, I sketch or paint.

 

Dee

Every Day is a Blessing!

 

Advocacy - the Good and the Loss

Since my last post, my advocacy work has been time consuming but worth it since I felt good about the "work" I was doing. There were two Scientific Review Board meetings, two ASCO Evidence Based Medicine Committee meetings, two #gyncsm chats ( Genetic Testing and Gyn Cancers , Talking to Family and Friends about Cancer and Cancer Risk), two Citizen Scientist Workgroup meetings, a Community Cancer Action Board meeting and support calls for Cancer Hope Network. I also was involved in submitting two journal articles.  I can't wait to share them early next year. 

Those were the good things. But with those comes the sad parts. During a support group meeting in October the moderator asked me why I didn't write about those sad parts.At that time it was too difficult.

I met Nadia through Twitter. In December 2020, she reached out to me via direct message on Twitter.   She had been diagnosed with stage 3 high grade serious ovarian cancer.  Nadia Chaudhri was a neuroscientist in Canada. She taught, had a lab and mentored students. She was married with a young son. We didn't speak too much about treatments except for maintenance therapies. But we did talk about emotional issues. How to find a new way to live after ovarian cancer,  sharing the best times with our loved ones and talking to children about our cancer. In February, she told me the lesion was gone . We talked about savoring that good news. In DMs, we talked how I plot my CA-125's and how much to this day I still get anxious when I need to go for that blood test.

She shared on her public Twitter account about ovarian cancer, her treatments and hospitalizations, and her family. She gained thousands of followers.  In May, she learned her cancer had recurred. In a Tweet , she shared how she told her son she was dying of cancer.  GMA published her story Mom gets outpouring of love from Twitter after revealing she has to tell her son she is dying (https://www.goodmorningamerica.com/wellness/story/mom-outpouring-love-twitter-revealing-son-dying-77674650). In a DM, I shared that my mother passed away when I was young and how I thought that telling her son was a loving act.

In September , Ovarian Cancer Awareness month, she shared her story on the GMA website to raise awareness of symptoms in  Mom dying of ovarian cancer shares what she wants women to know about the deadly disease (https://www.goodmorningamerica.com/wellness/story/mom-dying-ovarian-cancer-shares-women-80167654) . She also raised funds to support underrepresented scholars in her research area.

On October 5th, at the age of 43 Dr Nadia Chaudhri died. 

I read a tweet saying she had passed and sat at my desk and cried. I never met Nadia in person yet her life affected me so, so strongly. I had a hard time explaining to my husband as he saw me crying how a women I only met because we had ovarian cancer could have such an strong affect on me. I still can't explain it except that Nadia was an extraordinary woman. 

Dee

Every Day is a Blessing!

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!

12 Years a Blogger

This post will be my last one of 2019 and it marks my twelfth year writing this blog. This blog has opened doors to so many other advocacy activities and I am grateful for those opportunities.

I had some wonderful advocacy opportunities this year.

I continued to blog for Globeathon. My latest post was advice on Holidays Past .

I have become more active as an ASCO member, too. In June, I spoke with Dr Elizabeth Dickson at the ASCO Annual Meeting in Chicago on the needs of gynecologic cancer patients (http://womenofteal.blogspot.com/2019/06/asco-reporting.html). And in late September, I traveled with other ASCO members to ask Congress for support of three bills that could impact the lives of people diagnosed with cancer (http://womenofteal.blogspot.com/2019/10/asco-advocacy-summit.html). I also became the patient representive on ASCO's  Clinical Practice Guidelines Committee and the Social Media Workgroup.

I continue to  serve on the Scientific Review Board at Rutgers Cancer Center of New Jersey and am also a patient advocate on the Community Advisory Council. In September, I presented my story as an ovarian cancer survivor at the Gynecologic Cancer Awareness event at RCINJ as well as to a class of social work students at Rutgers University. 

Working with other Twitter Cancer Community leaders and social media experts,  I helped author Organizing Online Health Content: Developing Hashtag Collections for Healthier Internet-Based People and Communities 
JCO Clinical Informatics  https://ascopubs.org/doi/full/10.1200/CCI.18.00124


I also continued to co-moderate the #gyncsm Community on Twitter chats with Christina Lizaso and covered some really important topics such as  Maintenance therapies, PARP inhibitors and the origination of high grade serous ovarian cancer. 


I look forward to seeing what 2020 will bring to my advocacy, this blog and the future of ovarian cancer research. 


Dee
Every Day is a Blessing!

Becoming a Research Advocate

Yesterday, I had a phone conversation with a stage 4 ovarian cancer survivor who was interested in becoming a research advocate. We met on Twitter and have followed each other for the past few months. She asked me questions about how I got started in advocacy and places she could go to prepare to  become a cancer research advocate. In  A Bit of Advocate in All of Us an article I wrote for SHARE 
(https://www.sharecancersupport.org/2017/01/a-bit-of-advocate-in-all-of-us/ ) I wrote about different types of advocacy. Today I want expand on that information I provided on  research advocacy. 

General Cancer Research Advocacy:

Research Advocacy Network - (http://researchadvocacy.org/)
RAN offers downloadable resources on topics such as those listed below that a research advocate can find beneficial.
Tutorial:Genomics in Cancer
Tutorial: Molecular Diagnostics in Cancer
Tutorial: Pathology and Tissue Research
Tutorial: Understanding Cancer Risk
Tutorial: Understanding Clinical Trial Design
Tutorial: Quality of Life and Patient Reported Outcomes
Tutorial: Biomarkers in Cancer

RAN also offers an online course on The Basics for Research Advocacy (https://researchadvocacy.org/advocate-institute/online-course-basics-research-advocacy )


AACR
The AACR (American Association for Cancer Research, www.aacr.org)  has programs specifically for research advocates.  I know a number of advocates, ovarian and other types, who have participated in the Scientist<-> Survivor Program at the AACR Annual Meeting."The program provides advocates with special lectures using lay language, small group discussions, and other opportunities for the exchange of information on key aspects of cancer research, survivorship, advocacy, and public policy." The deadline for the program at next year's AACR program is December 11,2018. Follow this link - https://www.aacr.org/ADVOCACYPOLICY/SURVIVORPATIENTADVOCACY/PAGES/ANNUAL-SCIENTISTHARR%3bSURVIVOR-PROGRAM-AT-THE-ANNUAL-MEETING___01696D.ASPX for more information and the online application. 

<->(https://www.aacr.org/patients-caregivers/patient-advocacy/)

ASCO / Cancer.Net
 The American Society of Clinical Oncology, ASCO , welcomes patient advocates as members at the Patient Advocate level (https://www.asco.org/get-involved/membership/member-benefits/patient-advocates). This membership allows patients/advocates access to savings on registration at meetings, magazines, guidelines and volunteer opportunities.  
The Foundation arm of ASCO is Cancer.Net. "The Conquer Cancer Patient Advocate Scholarship Program provides scholarships for patient advocates to attend ASCO-sponsored Symposia and the ASCO Annual Meeting to learn of important advances in their areas of interest. Scholarships help cover travel, hotel, and registration expenses and are based primarily on financial need, advocacy experience, and current advocacy activities and involvement." This link (https://www.cancer.net/research-and-advocacy/patient-advocates/conquer-cancer-patient-advocate-scholarship-program) will provide information on the 2019 meeting scholarships when the application period opens.

Ovarian Cancer  Research Advocacy Information 

Ovarian Cancer Research Alliance
OCRA (ocrahope.org ), formerly OCRFA,  provides information on various types of advocacy. On their Research Advocacy Page (https://ocrahope.org/advocacy/research-advocacy/)  you can read reports on research from their advocates who attend various medical conferences and meetings. While those who represent OCRA as Research Advocates are by invitation only, the stories of a few advocates such as Annie Ellis and Susan Leighton can provide additional ideas for roles you can play in supporting research.

OCRA also has a program known as Advocate Leaders which is a legislative advocates program. (https://ocrahope.org/advocacy/advocate-leaders/ ) 


FORCE 
Facing Our Risk of Cancer Empowered (http://www.facingourrisk.org/index.php)
"The FORCE Research Advocate Training (FRAT) Program is a basic educational course aimed at preparing people to become engaged in research advocacy on behalf of the hereditary breast, ovarian and related cancers community. " After filling out an application and being accepted into the Training program you take part in a number of webinars. You may learn more at http://www.facingourrisk.org/research-clinical-trials/research-advocate-program.php

I hope this helps other women get started as Research Advocates. If you know of other research advocate opportunities or training please let me know and I will update this page.

Thanks T for providing the spark I needed to write this blog post. 

Dee
Every Day is a Blessing! 

Updated 2022

Taking a Look at the Big Picture

Over the past few days I have been thinking about the role my advocacy work takes in relationship to my family and life outside of cancer. Every January for the past few years, I've reviewed my advocacy work and decided what I want to continue with in the next year.  This year though I  know the my family will require more time ( which I am happy to do), so I felt I needed to look at my advocacy work in a different way.

I have been blessed to be involved in different aspects of advocacy with a number of organizations and non-profits. Some organizations raise awareness, some raise funds for research and others reach out to Congress. There are ovarian cancer organizations, gynecologic cancer organizations, support organizations, peep to peer support groups, cancer patient empowerment groups, and industry groups.

Yesterday, I made a list of all the organizations I was involved with 2017 and my responsibilities.  The list contained eighteen organizations. Some volunteer positions had sub-items. Some of these organizations required me to travel or required me to attend an event or multiple events in person. Some required me to spend a great deal of time preparing information to disseminate to others. Some responsibilities were once a quarter, once a month or twice a month.  A few advocacy responsibilities required daily input or responding to multiple e-mails.  Some volunteer work was only "as needed". Some groups offer compensation but most do not. Some I could choose to do when I had time, like this blog. I like those best!

So my next step was to look at each advocacy opportunity and asked myself:

• how effective am I at doing that work?
• am I the only one doing that work?
• if I am the only one can another advocate/person do it?
• how much does the work benefit other survivors/patients? 
• how many people are effected by the work I do?
• do I ever regret having agreed to do the work and feel that way when I am doing it?
• does the work ever prevent me from doing other things - like hang out with my husband, grand-kids or dog?
• does that work bring me joy?

By asking those questions I came to the realization that I can and should make a change in what I concentrate my advocacy efforts on. So that is what I am starting to do. After all my priority has always been family first.

Some of these activities will be harder to step back from than others (I really love the people I interact with in these organizations) but I need to look at the Big Picture and make some changes. 

Don't worry though I will still be writing this blog and co-moderating the #gyncsm chat. For many others, well, over time I will need to let them know I will not be participating at the level I have in the past.
 
I just read a post by Susannah Fox ( Letter to Shareholders) in which she reviewed her work life in 2017 and detailed her wins and losses.  Have any of my fellow advocates gone through a similar process to determine where they were and how they want to spend their time going forward ?  I'd love to hear how made your decisions.

Dee
Every Day is a Blessing!

I Took a Break

September,  Ovarian Cancer Awareness month is a very emotionally and physically draining month for me. I spend a good deal of time thinking about and talking about ovarian cancer - symptoms, treatments, statistics. I posted to this blog every day as well as shared information from other organizations  in daily promotions on Facebook and Twitter. I attended fundraising walks and other events to raise funds for ovarian cancer research.

In the middle of the month I had an appointment with my gyn onc for my 6 month check-up. I also had a CT scan since my CA-125 has been creeping. I dealt with so many emotions including the fear I might have recurred. The exam and CT report were good so I am set for 6 more months.

But during this month of ovarian cancer, I remembered. I remembered women who became my friends over the past 12 years who have died because of this disease - like Janice, Carol, Jane, Sherry and the list goes on. It made me angry and sad.

I know that when that happens I need to take a break. And that is what I did. I stepped away and concentrated on family ( visits with kids and grandsons)  and other non-cancer things such as beginning work on two paintings. I recharged my batteries to begin my advocacy work again.

And then last week,  I got this in the mail !

As a Patient Advocate Member of ASCO I was chosen as a 2016 Advocacy Champion - Speaker's Club for legislative advocacy work ( e-mails , tweets and blog posts)  that I did for ASCO on cancer research and funding issues in 2016. I don't do what I do to be recognized but it felt good to be appreciated.

If you are a patient advocate you should consider joining ASCO. You will be able to network with the top oncologists in the world and stay on top of the latest research in precision medicine.  Check out this membership page for more information https://www.asco.org/membership. 

I'll be posting more ovarian cancer research news in a few days.

Dee
Every Day is a Blessing!

Day 28 A month of Teal :My Top Picks for Brochures and Links about OC

Over the years there have been certain websites and brochures that have been my "go to" places for ovarian cancer information. As we close in on the end of Ovarian Cancer Awareness Month I want to share them with you.

Foundation for Women's Cancer ( SGO):
Find a Gyn-onc http://www.foundationforwomenscancer.org/find-a-gynecologic-oncologist/
Ca-125 CA 125 Levels: Your Guide (2017)
Ovarian Cancer - Ovarian Cancer: Your Guide (2017)

NCCN:
Guideline for Patients with Ovarian Cancer https://www.nccn.org/patients/guidelines/ovarian/index.html

NCI:
https://www.cancer.gov/types/ovarian

NIH:
https://www.nih.gov/news-events/nih-research-matters/detailed-look-ovarian-cancer
statistics: https://seer.cancer.gov/statfacts/html/ovary.html

Cancer.net (ASCO):
http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer

ACS
https://www.cancer.org/cancer/ovarian-cancer.html

National Advocacy Organizations 
OCRFA- https://ocrfa.org/
NOCC - http://www.ovarian.org/

Dee
Every Day is a Blessing!

Writing About Advocacy

I am pleased to share a piece I wrote on how to advocate for yourself and others. It appears on the SHARE Cancer Support Blog. Their mission is to create and sustain a supportive network and community of women affected by breast and ovarian cancers.

Use the link below to read A Bit of Advocate in All of Us.

https://www.sharecancersupport.org/2017/01/a-bit-of-advocate-in-all-of-us/

Be sure to check out the support programs and resources SHARE has to offer.

Dee
Every Day is a Blessing! 

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.


Dee
Every Day is a Blessing

A Woman's Health Interview

I was interviewed a few months ago by a writer for A Woman's Health Magazine. She wrote an article called "Committed to Community" about my advocacy work. Click here to read the article. And please take the time to read the entire Special Section on Ovarian Cancer. The magazine did a great job highlighting ovarian cancer.


Dee
Every Day is a Blessing!

I Am LiveSTRONG

I usually tend to stay away from sports news and controversy on this blog but after reading some comments and listening to news reports about Lance Armstrong and the LiveSTRONG Foundation, I feel I need to share my thoughts with my readers. 

Was Lance Armstrong wrong to dope? Yes. Was he wrong to lie about it? Yes. Am I disappointed in his actions? Yes. 

Do I still support the LiveSTRONG Foundation? Yes. Why, you ask? Unless you are a cancer survivor you may not understand this but I am LiveSTRONG and so is Brian, Katie, Crissy, Ron, Kendall, Henrike, Cindy and thousands of other survivors and caregivers. 

Let me explain.  Make believe you are Clarence, the Angel, from It’s a Wonderful Life ( My favorite movie). You go back in time and show me what my life would be like without my experiences with LiveSTRONG. 

If I didn’t attend the very first LiveSTRONG Survivors Summit Austin Texas in 2006 I would not be the cancer advocate I am today. You would not be reading this blog. Attending the Summit gave me the confidence that I could make a difference in the lives of other ovarian cancer survivors. 

If I had not attended the Summit there may not be a Gynecologic Cancer Support Group at my cancer center. Part of my action plan after the Summit was to establish a cancer support group specifically for gynecologic cancer survivors at my cancer center. With the support of my gyn-oncs and the center’s social workers the group was created. It is still in existence today almost 8 years later. 

If I wasn’t a representative at LiveSTRONG Day in 2007 I would never had learned how to advocate for increased support for cancer research and survivorship issues with members of Congress and my local officials. 

If I had not attended the LiveSTRONG Survivors Summit in 2008 I would not have presented a workshop on Advocacy at the Cancer Support Community- Central NJ ( CSC-CNJ) .  

If I had not met other cancer survivors from around the country at those Survivor Summits I would not have been aware of opportunities to raise awareness of ovarian cancer and survivorship issues. Thanks to Katie, I applied and was accepted as a Research Advocacy Network - Focus on Research Scholar and attended the Annual ASCO meeting in Chicago in 2011. I shared my experience at ASCO on my blog and presented two workshops on Understanding Cancer Research at CSC-CNJ. 

If I had not walked the Philly Livestrong Challenge raising funds for LiveSTRONG I might not have helped other survivors. 

So you see LiveSTRONG made a big difference in my life. It is not about the bike it is about hope and knowledge and uniting with other survivors.  I will continue to LiveSTRONG. 

Dee

Every Day is a Blessing!

ASCO - the End Part II

All the Focus on Research© Scholars where asked to video a testimonial about their experience as an advocate at ASCO. Below is my testimonial.

I am an ovarian cancer survivor and advocate. Being part of the Focus on Research© program this year has been an honor.

The preparation offered prior to attending the conference was invaluable. Learning about biomarkers, drug development and clinical trial design has increased my understanding of cancer research. Interacting with the webinar lecturers, Drs Byers, Hong and Bemis helped to improve my communication skills and raised my confidence to discuss research topics with poster presenters and education session lecturers. Knowing the language and acronyms of cancer pathways, drugs and agents was an asset during the conference.

At ASCO the interaction with other advocates and hearing about their experiences has been both enjoyable and inspirational. I look forward to maintaining these relationships for years to come.

Another benefit of my attendance has ben an increased respect for cancer researchers and the challenges they face in both the US and internationally. I was thrilled to interact with a large number of international researchers at poster sessions and in the lecture hall. Learning about advances such as PARP inhibitors, monoclonal antibodies and other individualized medicine agents gives me hope for the future of cancer research.

I look forward to working with my dissemination partner. My goal is to share the exciting research developments I learned about this weekend in terms that are understandable by patients and caregivers.

Thank you to the Research Advocacy Network's Advocate Institute© for the incredible opportunity.

Dee

Every Day is a Blessing!