15 Years !

 

It is hard for me to believe that here I am in 2022 writing a post celebrating 15 years as a blogger. I know this year I posted less than one quarter of what I posted in 2008, my first full year of blogging.  But I did post from two oncology meetings,  SGO, which I attended in person ,and ASCO which I attended virtually due to a case of vertigo. In other posts I shared research news, FDA drug approvals, a book review and two posts by guests. 

As I looked back on what I wrote about this year, I realized I completely forgot to share two endeavors that were very exciting for me.  

I was a co-author with other amazing advocates of an article in JCO Oncology Practice.   

The Rise of the Expert Patient in Cancer: From Backseat Passenger to Co-navigator https://ascopubs.org/doi/full/10.1200/OP.21.00763 

Please give it a read when you get a chance and see the expanded role advocates play in their care as well as in cancer policy and research.

Along with #gyncsm co-founder, Christina Lizaso,  researchers from Duke University and SMART Patients we had an article published in Gynecologic Oncology Reports. 

 

Understanding the needs and perspectives of ovarian cancer patients 

when considering PARP inhibitor maintenance therapy: Findings from two online community events

https://doi.org/10.1016/j.gore.2022.101050

In this article we found women with ovarian cancer in online communities have educational needs regarding PARP inhibitors and they would likely benefit from educational tools.

I'll catch up with you in January for my aspirations for 2023.

Dee

Every Day is a blessing!

Blogging for 14 years

 

I-Stock graphic

 

 It seems like only yesterday when I wrote, 

"Today I took the plunge and decided to make this blog. I guess you could say it is an early New Year's resolution. In addition to sharing my thoughts on this journey, I will post links and information relevant to women diagnosed with ovarian cancer in New Jersey."

It was December 30, 2007, fourteen years ago.

This year as in 2020 meetings and conferences were virtual so many of my posts dealt with what I learned in those virtual meetings. I admit I miss meeting in person the researchers, gynecologic oncologists and advocates I respect and admire. I hope as more people are vaccinated and boosted and omicron lessens we can go back to meeting face to face.

When I looked at my stats for this year, I found my blog was viewed 33,000 times in 2021. My top five most viewed posts in 2021 include:

Let's Chat a 2019 Guide to Tweet Chats

#ASCO  Begins Soon

2021 SGO Virtual Meeting Sunday March 21st 

2021 SGO Virtual Meeting Friday  March 19th Highlights 

It's All About Waiting 

As I look back,  I see that during certain years,  I wrote more frequently than at other times. It seems as my advocacy roles on Review Boards, Data Review Committees, Citizen Scientist Committees, presenting at meetings and moderating the #gyncsm Community with Christina grew, the number of blog posts dropped. I am not sure what 2022 will bring, but  I will continue to strive to stay true to that original statement as long as my followers find the information helpful.

I'll catch you in January with my aspirations for 2022 .

Stay Safe and Stay Well!

Dee

Every Day is a Blessing!

Lucky 13

chadheathcott.com

For me, 13 is a lucky number. I lived for over thirty years in a home with an address number of 13. And today, I celebrate writing this blog, all 1147 posts, over the past 13 years. 

As I approached this blogging anniversary I admit I have been thinking that it may be time to stop blogging. There have been many times over the past year when I had writer's block. I just couldn't come up with an idea that I thought would interest my readers or provide any insight into living and surviving ovarian cancer. 

Being so many years out of treatment, I was starting to feel that my experience was no longer relevant to women who now have options to use Bevacizumab or Parp Inhibitors as maintenance therapies. I could read about the different types of therapies but I never took any maintenance therapy. This year women are struggled not only with a cancer diagnosis but having treatment during Covid -19.  I did go for my annual cancer center visit in September but my appointment was never delayed or impacted in any way by COVID 19. 

Then a few things happened. 

I have had the opportunity to speak to two women on a monthly basis since July as a Cancer Hope Network volunteer. (I've been a CHN volunteer for over 10 years now.) While I can't share their stories, I will share that when I called them last week to wish them a Merry Christmas,  one had good news because of good scan results while the other had not such good news.  Yet both were glad I called so they could share their news. Both thanked me for listening and being available to answer their questions.

Then a women diagnosed with ovarian cancer reached out to me via direct message on Twitter. I answered a few of her questions and said I have written a blog for a number of years if she would like to read it and shared the link with her.  A few days later I got another DM from her and she commented on how reading a few posts were so helpful.

Lastly,  a fellow cancer advocate commented on my previous post "Stay the Course". She said "So often we think we have to do something huge or make sweeping changes. Sometimes, "staying the course" is enough. " 

So I will do just that.  I will stay the course and continue to write this blog in the hopes that I reach just one woman.

May all my readers have a Happy and Healthy and Safe 2021 !

Dee

Every Day is a Blessing.

If I Reach One Woman

Over the years I have contemplated whether or not this blog is valuable to others and whether or not I should continue posting to it. I get very few comments - even spam comments - compared to the comments which the #gyncsm community blog receives. 

I think that I write this blog as much for myself as for others. . I have made some great connections through this blog. And it is a place where I can go back and reread information on tests I had or events I attended or how I felt at a specific time in this journey.

I remember how I felt when I was first diagnosed and didn't know much at all about ovarian cancer. Looking for someone who had a similar experience. So  I continue writing.

And then every few years I cross paths on another platform - Facebook group, Smart Patients, Inspire and they ask me if I am the one with the Women of Teal blog. Like this woman who last week responded to a post on another platform that I wrote about the  #gyncsm chat on Vaccines.

So great to see you on this site. I’ve read many of your Women of Teal blogs, but was never able to figure out how to reply with a thank you. So, thank you for your work and dedication to the OVC community. When I was diagnosed with stage 3 c ovc in 2015 ...  I tried to research information about this beast of a disease and somehow came upon your site. Your words helped me to deal with an overwhelming sadness. My doctors told me it would come back. The fact that you recurred and still continued to give back always stayed with me. 
( public response)

There is my answer. I will continue writing this blog.

Dee
Every Day is a Blessing.

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! 

 

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. 

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!