Summer Blogger Challenge - Nancy's Point

I have followed Nancy's Point written by Nancy Stordahl for a while now. I  reviewed her book on this blog in 2016. When she posted a blogger challenge I thought - Why not.  So here goes.

How long have you been blogging (or reading blogs)?

I have been blogging since December of 2007. 

How has your blog changed?

This blog originally was more a way to share my experience as a late stage ovarian cancer survivor. As my role as an advocate became more research focused my blog has morphed into more of a place to hear the latest news about ovarian cancer research - from conferences like ASCO, AACR and SGO as well as newly published studies and clinical trial designs. I continued to weave my experience into a few blog posts a year. 

What is your biggest blogging challenge/frustration?

Finding the time to blog. 

What is your favorite post that you’ve written (or read)?

I think it is probably the one I wrote for the 10th Anniversary of writing this blog. http://womenofteal.blogspot.com/2017/12/reaching-milestone-this-blogs-10th.html

What are your goals for your blog? (Why do you read blogs?)

I hope to continue to share information about the latest research and approved drugs for ovarian cancer. 

How many blogs do you read on a regular basis? 

I probably read about a half a dozen - some by individuals I know and some blogs from organizations. 

How do you determine what to share and what not to share; in other words, do you have blog boundaries? (or comment boundaries)

I will only post things of interest to women diagnosed with cancer or relevant to my journey with the disease. I do not share any political commentary although I will share if I have written to Congress about a specific bill of importance to cancer patients. 

When things get hard, what keeps you blogging (or reading blogs)? 

I don't worry about blogging as much as I did initially. Sometimes I place an undue burden on myself such as when I say I will write something new every day during September - Ovarian Cancer Awareness month. I did that twice and it really stressed me out. So I just wait till I get and idea or read something I want to share to blog. 

What is your biggest Cancer Land pet peeve today, right now, this minute?

Biggest peeve - When I read articles online about the latest "cure" and it turns out the treatment has never been tried in humans.  

What one piece of advice would you offer to a new blogger?

Just do it! Start off with a simple layout and write about what is important to you. There is someone else out there who will benefit from what you write. 

Share something most people do not know about you. A secret sort of thing.

I love Disney World and my favorite character is Winnie the Pooh. I can't wait to see the latest movie. 

What do you enjoy doing in your spare time?

I love to paint quilts and dogs with an occasional  landscape. Painting relaxes me and makes me forget my worries.

 Dee
Every Day is a Blessing! 

 

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://ocr.endgyncancer.com/ to register or read the consent form please visit https://ocr.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.


Dee
Every Day is a Blessing!

Reaching a milestone - This Blog's 10th Anniversary

It is hard to believe that on this day in 2007 I created this blog and wrote my very first blog post. I was inspired through friends I met at the LiveSTRONG Survivors Summit to write a blog as a way to share my story with other women diagnosed with ovarian cancer.  I also provided information on ovarian cancer awareness organizations in NJ and their local events.

Through the years I have covered many topics related to what I experienced as a patient and survivor. Some posts were about the physical aspects of being a survivor but I also shared the emotional aspects of treatment and survivorship. I wrote about my recurrence in 2008, from hearing my cancer had returned, to the surgery to remove my spleen and resection my liver, to the chemotherapy and the allergic reaction to carboplatin that required a hospital stay. I have written about dealing with "scanxiety" as I wait for test results, the sadness and guilt when my  friends pass away from ovarian cancer, the frustration from chemo brain and the peripheral neuropathy in my toes.

I also shared the happy occasions, the graduations, weddings and births and wonderful family trips. Writing this blog also opened doors for many other advocacy avenues. Through my activities on the Twitter account of this blog,  I co-founded the #gyncsm ( Gyn Cancer Social Media ) Community. I  co-authoring the book "100 Questions and Answers about Ovarian Cancer", and wrote blogs posts for SGO, SHARE and Cancer Hope Network and my cancer center's newsletter.

As my advocacy work expanded to research advocacy, my blog posts evolved to be a way for me to explain in layman's terms the latest ovarian cancer research. Now I write about new clinical trials and trial results reported in peer reviewed journals. I blog and Tweet about the ovarian cancer research when I attended ASCO annual meetings in person.

I've never kept close track of the statistics for this blog. Usually once a year, on this blog's anniversary I look back at what I wrote during the previous year. In 2017, I wrote 54 posts including this one. I have published a total of 1060 posts in the past 10 years. Some years I wrote more blog posts than other years but I continued to blog. This blog's pages have been viewed 356,827 times.

My top five posts since 2010 (when Blogger started keeping track)  are:

What I Wish I Knew Before My First Chemo

May 9, 2011

2209 views

ASCO 2015 Part I : Connections

Jun 5, 2015

1760 views

ASCO 2015 - Connections and Knowledge

Jun 3, 2015

1635 views

No Berry Smoothie Flavored Readi-CAT for Me

Aug 17, 2011

1564 views

Book Review: Making Sense of Medicine

Sep 11, 2016

1406 views

I have enjoyed sharing my story and educating others about ovarian cancer through this blog. I hope that women diagnosed with ovarian cancer, their caregivers and others who follow this blog have found it helpful. I do believe - Every Day is a Blessing !

See you all in 2018!

Dee
Every Day is a Blessing!
PS : This blog may look different when you check back in January. 

Day 5 #HAWMC My Go To Platform - Twitter

Well I had high hopes that I would write each day for the Health Activist Writer's Month Challenge but it seems I already missed two days. So I will just have to jump in when I have the time to post. Here goes with today's challenge of writing about my Go To Platform.

I started blogging as Women of Teal back in 2007, joined Twitter in 2011, joined Instagram in 2012 and lastly took Women of Teal to Facebook in 2015.

So which is my Go To platform. 
Twitter

I can honestly say I have not only enjoyed it but I have made the most connections on that platform. I have  learned so much from other survivors, researchers , physicians and organizations and yes even the federal government. (I recommend you follow @TheNCI . ) I have asked questions and gotten almost instantaneous answers. I have shared losses which are sadly very common in the ovarian cancer world and I have gotten words of support. I have cheered on others in their journey with ovarian cancer and chatted with my #bcsm sisters about BRCA mutations and metastatic disease. Is it a challenge to write in 140 characters? You bet. So you have to make every word count. My best twitter experience is when @btrfly12 and I co-moderate the #gyncsm chat. (You should join us 2nd Wed of the month 9pm ET.)

So if you aren't on Twitter give it a try. Look for me. I'm @womenofteal. And be sure to say Hi!

Dee
Every Day is a Blessing!