Nine Years Ago

Has it really been nine years? I never thought when I started this blog on December 30, 2007 that I would be writing it so many years later. But here I am so here I write.

This year was not my most productive - this is my 41st post of the year. That is an average of only 3.4 posts per month.  In July I only wrote one post. In June,  I posted more than three because I couldn't wait to share all the research news I heard at the ASCO annual meeting. Attending that meeting as a survivor/ research advocate is a real privilege and I recommend that if you are a research advocate you apply for a scholarship to attend. Then in November I  tried the WEGOHealth Health Activist Writers Month Challenge but I ended up only writing seven posts. But I enjoyed the prompts that I did respond to.

My most popular posts of 2016 were:

A Rudderless Ship

Apr 26, 2016

The Days of ASCO- Liquid Biopsies

Jun 13, 2016

Between a Rock and Hard Place - Surveillance after...

Aug 24, 2016

So why did I blog less this year than any of the previous 8 years? I think it is due to an increase in my advocacy work over the past 12 months. I continue to  co-moderate the #gyncsm chat  (2nd Wed. of the month 9pm ET) and post on the communities blog (http://gyncsm.blogspot.com/).  This year we ran a survey so I worked with Christina ( @btrfly12) developing and analyzing the data from that survey to guide our future chats.We draft questions, invite guests, develop resources and promote this monthly chat as well as sharing on Twitter important developments of interest to the gynecologic cancer community on a daily basis. 

As a member of the  Board of the Kaleidoscope of Hope Ovarian Cancer Foundation, which raises funds for ovarian cancer research I oversee the social media (Facebook, Twitter) and the Foundation's website content.  I also volunteer with ASCO, serving as a patient representative on a tumor board and guideline panels.  Then I spent time in October working on a presentation and attending the AZ Patient Summit in Portugal. 

And of course time with family( always my first priority)  cut into the time I would spend writing blog posts. There are times I question whether or not I should continue writing this blog.  But I always come back to my original goal for the blog - to help other women diagnosed with ovarian cancer. Even if I help and support one woman a year I feel I've accomplished something.

So I will keep on writing.

Dee
Every Day is a Blessing! 

Day 1 of #HAWMC - What drives me...

I'm not sure I can actually complete this #WEGOHEALTH challenge but I will give it a shot again this year. 

What drives me...

When I was first diagnosed with ovarian cancer in 2005 I had not met another women with the disease. But I did know the story of Gilda Randner's diagnosis and that is not how I wanted my story to go. So I began this blog in 2007 to reach other women diagnosed with ovarian cancer so they didn't feel alone, to provide evidence based research and awareness of the disease.

Did you know that there is no screening test for ovarian cancer?Nope. That Pap test you go for is for cervical cancer.

I bet you heard that ovarian cancer is silent. Nope. Ovarian cancer can produce symptoms.
Bloating
Frequent urination
Pain in the pelvis or abdomen
Feeling full quickly

See if these occur for more than 2 weeks without stopping see your doctor. As one gyn onc I heard at a survivors meeting say - Ask your doctor to prove you don't have ovarian cancer.

I bet you thought all ovarian cancers were the same. Nope. There are many different types - epithelial, germ cell, stromal cell and these have subtypes and grades. 

I bet you thought ovarian cancer wasn't linked to any hereditary mutations. Nope. Women who have a BRCA 1 and 2 mutation are at higher risk for ovarian cancer so tell your doctor if you aunt or mother or sister or grandmother on both sides of your family had breast or ovarian cancer.

September is ovarian cancer awareness month but those with the disease try to raise awareness of the disease all year long. So if you see the color TEAL think ovarian cancer.


Dee
Every Day is a Blessing! 

"Outshine"- A Must Read

Last month, I won a Wego Health contest in which the prize was an autographed copy of " Outshine An Ovarian Cancer Memoir "by Karen Ingalls, a stage II ovarian cancer survivor. Due to a very busy Christmas holiday I didn't get a chance to get around to reading it until New Years Day.

"Outshine" is a well written, easy to read book. For me, reading the book was as if I was having a coffee and chatting with a woman from my support group. Ms Ingall's not only shares her story with ovarian cancer but also provides information about the symptoms of the disease, diagnostic tests ( CT, MRI, PET) and treatment options. Helpful for newly diagnosed women is her advice regarding how she handled side effects of chemotherapy through standard medicine and complimentary medicine. She also discusses the important role her husband, family and friends played in aiding in her recovery. Ms Ingalls does not leave out the pain and anguish.  I could totally relate to what she was going through.  Rather she offers excellent advice on how she dealt with not only the emotional issues but also the physical issues of her diagnosis. 

This may seem odd but I couldn't wait to get to the end of each chapter. Why was I in such a rush? Because I couldn't wait to read the poem, scripture verse , saying or affirmation related to the chapter. Here is the one you will find at the end of Ch 15:

We can turn our backs on tomorrow
And live for yesterday.
Or we can be happy for tomorrow
Because of yesterday.- Anonymous

Over the past 9 years I've read a number of books by or about women diagnosed with ovarian cancer such as The Light Within  and Memoir of a Debulked Woman as well as other books by and for cancer survivors. "Outshine" is one of my favorites and its contents are of value to women diagnosed with the disease as well as their caregivers. I will be sure to share the book with women in my support group.

You may order the book on Amazon. More information about the author and the book may be found at the book's website.

Dee
Every Day is a Blessing! Blessed to have had the opportunity to read "Outshine".

From Family to Frankly Speaking to Patient Centricity

It sure has been a busy week for me. We returned home from seeing my daughter and her family in Kansas early in week. It was great attending my son-on-law's change of command ceremony

and being able to spend time playing and reading to my grandson. They will be moving in two weeks to California for Andy's next assignment.  I thrilled that I will be able to visit them in sunny California later in the year.

Then I jumped right back into  my role as a survivor and advocate. On Wednesday,  the Cancer Support Community - Central New Jersey invited my gyn-onc,Dr Gibbon to present a noontime Frankly Speaking about Gynecologic Cancers presentation. There were about a dozen women in the audience so it was very easy for it to be more of a chat with questions and answers than a lecture. Dr G did a great job making the science of ovarian cancer and it's treatments understandable. Some of the topics she spoke about were risk factors, current treatments, genetic testing, precision medicine, vaccine therapy and parp inhibitors. 

Thursday I spent time prepping for my participation at the 10th Annual Patient Summit USA 2013. I was invited by Wego Health to be part of a panel discussing patient centricity. 

The Summit day arrived on Friday.  I drove the hour into Philadelphia to the  Hilton and was able to attend the morning sessions which included talks on understanding your patient as the end-user, proving the value of patient programs and an excellent presentation by Emily Freeman, Pfizer on Shared Treatment Decision Making(STD). STD brings the patient on an equal standing to the physician regarding treatment for chronic illnesses. Then a bit of deja vu occurred when Walter Berghahn spoke about supply chain safety with a focus on drug packaging. ( I worked in packaging for a number of years.) He highlighted ways to achieve better patient adherence. 

At lunch I met up with the Wego Health team and health activists. I am in awe of the advocacy work and endevours of these activists. Then it was time to take the stage with Melissa Barnhardt, Wego Health, Tiffany Westrich an autoimmune rheumetoid arthritis activist ( www.iaamovement.org)  and Scott Benner a diabetes activist (www.ardensday.org). 

I offered the following recommendations to the audience from the pharmaceutical industry:

• Patient centricity is about treating the whole person not just the disease.
• Speak to patients in laymen's terms.
• Use infographics to explain information and processes
• Reach out to Advocacy groups to diseminate information.

I am so pleased to have been a part of the movement to give patients a voice. Thank you Wego Health.

Dee
Every Day is a Blessing!

A Different Type of Conference

Yesterday I took part in a panel at the ePharma Summit Marketing in a Digital World conference in NYC. The panel organized and led by WEGO Health’s Bob Brooks was titled Social Media for Pharma: A Match made in Heaven or Hell. 

I have attended ASCO annual meetings which were geared toward cancer research results and two Ovarian Cancer Survivors Courses by the Foundation for Women’s Cancer but this was the first time I attended or took part in a conference not geared completely toward ovarian cancer or cancer research but geared toward digital pharmaceutical marketing. My audience  and a majority of the other attendees were not other survivors or researchers but marketing directors, communication executives and marketing and healthcare technology professionals.  

I arrived early to be able to listen to a few of the other speakers. There were talks on how to use real-time data, how to use Big Data ( lots and lots of data) effectively, how to engage patients and how to build a relationship with patients to improve patient compliance in taking their prescription medication. 

Notable lines:

Data beats opinion. 

How have I satisfied my customer?

Engage your customer.

Get more personal.  

I was happy to see that the theme was how companies need to listen to their consumers/patients. 

Then the afternoon rolled around and it was time to walk up on the stage with the other panelists, Michael Weiss, a Crohn’s disease activist( www.hospitalpatient.com), Tiffany Peterson, a Lupus activist (tiffanyandlupus.com) and Casey Quinlan, an author and breast cancer activists( cancerforchristmas.com). They are amazing activitists going above and beyond to raise awareness of their diseases and speaking for other patients. 

My part of the panel focused on how Pharma could use social media and the internet to reach out to patients during drug shortages. Not just health care providers but patients who are on IV chemotherapy need shortage information too in order to plan their treatment going forward. I suggested that in addition to letters to physicians that pharma reach out to patients through a patient press release and infographics to explain processing steps, etc. I also highlighted the Doxil Supply page www.doxilsupply.com/ and twitter account @supplyupdate as examples of a good way to reach patients and how I wish it had been available more quickly. After the pane,l I was thrilled to have a chance to speak to Lisa, a digital marketing director from Janssen about the Doxil page.  

So yesterday I got a chance to share my feelings as a survivor and customer but I also learned. I learned that the FDA is responsible for notifying the public and patients regarding drug shortages. There are no FDA  rules for internet/ social media use by the pharmaceutical companies.  I think a new goal of mine should be how to get the FDA to better communicate information about IV shortages with us. Anyone know who I can write to at the FDA to get the ball rolling? 

Dee

Every Day is a Blessing!

I'll be a Panelist at e-Pharma

I am very excited to have been invited to participate in the 12th Annual e-Pharma Summit in NYC as part of a panel discussion session titled " Social Media for Pharma: A Match Made in Heaven or Hell?". The panel is made up of health activists like myself who use social media to raise awareness of illnesses. We will be discussing whether or not the educational social media programs of pharmaceutical companies actually affect health outcomes. 

The 12^th annual ePharma Summit, takes place on March 4 – 6 . ePharma is attended by pharma folks and the content includes interesting case studies and  keynote presentations. This year the Summit includes insights into healthcare reform and its effect on pharma and a panel on Electronic Health Records. Industry leaders including Dan Lyons, formerly of Newsweek and Fast Company and Chris Frank of AmEx and author of Drinking from the Fire Hose: Making Smarter Decisions without Drowning in Information are among the speakers.

What’s unique about the Summit's format is its' collaborative nature . This means the better the quality and diversity of the audience, the better the conversation and more valuable the outcome for all those attending. 

If you are interested in attending please Click here to visit the website and my personal discount code for 20% off the registration rate is XP1806SPKDS . 

Dee
Every Day is a Blessing!

Check out the WEGO Health Activist Speakers Bureau

I just applied to the WEGO Health Activist Speakers Bureau and I thought some of my fellow bloggers and cancer advocates might be interested in learning more about it as well – it’s a great way for Health Activists to share our stories, raise awareness and get the word out about the work we’re doing.

Members of the WEGO Health Activist Speakers Bureau receive exclusive invitations to present at conferences, speak to members of the media, and be featured on WEGO Health.

Interested in joining the WEGO Health Activist Speakers Bureau? Apply today! It only takes a few minutes and they’ll email you as soon as they have opportunities relevant to you and your interests.

Dee

Every day is a Blessing! 

My Health Word Clouds - HAWMC 30

Word  Cloud.  Make  a  word  cloud  or  tree  with  a  list  of  words  that  come  to  mind  when   you  think  about  your  blog,  health,  or  interests.  Use  a  thesaurus  to  make  the  branches  of your tree extend further ␣http://www.wordle.net/ 

Here are "Womens Cancer  I " and "Womens Cancer II" my word clouds . I had so much fun making the first one that I made a second. Enjoy! 

Dee

Every Day is a Blessing!

Health Activist Writer's Month Challenge

Fellow bloggers:

I will be trying a new activity this April. The Health Activist Writer's Month Challenge hosted by WEGO Health. I will be writing a post a day for all 30 days. Do you want to join me in writing every day about health? It's going to be a lot of fun and I'd love to see what you have to say about each of the topics, too. All you have to do to join is sign up here:http://info.wegohealth.com/HAWMC2012 and you'll be able to start posting once April rolls around.

Dee

Every Day is a Blessing!