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!

Time to Look Forward

I've been feeling pretty under the weather lately so I regret taking so long to do this post.

Every year in January I write a post on my aspirations for the year ahead. I'm not keen on resolutions but aspirations well those are just things I will keep trying for.

Just now, when I looked back at my aspirations from January 2017, I'm glad I can keep trying because I wasn't totally successful.

Here is aspirations will remain from last year:

• I aspire to continue to support other women who are diagnosed with ovarian cancer, to share my story as an ovarian cancer survivor and to promote ovarian cancer research. ( There are some activities that I will have to cut back on so I can achieve some of my other aspirations on this list.  I am adding that I aspire to  help more women become advocates. I see the same awesome advocates at events. We need more new and fresh voices.)
• I aspire to travel with my husband and visit at least 2 states I have not visited before. Maine is one of the two.  ( This has been on my list since 2016. But I'll try again this year.)
• I aspire to learn a new arts and craft technique. ( I did some glass blowing in 2017 which was loads of fun. ) 
•  I aspire to find a way to give back in my community or church. ( I wasn't as successful at this one as I had hoped to be so on the list it will stay.)
• I aspire to spend more time with my daughter and her family and my son and his wife.  (Trying to fill the time over the next few months while my daughter and her family are stateside and only 3 hours away.There are a few built in get-togethers too that I am excited about. ) 
•  I aspire to build an even better bond with my dog Amber so we can compete at the masters level in agility. (She did get her excellent std title last year,  so we really will be competing in masters in both JWW and STD.)

Now for new aspirations:

• Update this blog's layout. (Look! It's done! That was easy.) 
• I aspire to complete an online course in Genomics. (Yeah I'm a science geek. )
• I aspire to go kayaking.
• I aspire to make my FitBit celebrate each day as I hit my step count, sleep better, increase my fiber intake and drink more water. 

What do you aspire to do in 2018?

Dee
Every Day is a Blessing!

Impact of Digital Info & Patient Support Networks 2017

Healthline recently release the 2017 Cancer State of Cancer Report: Impact of Digital Info & Patient Support Networks. The Report provided the results of a survey of cancer patients, survivors and caregivers regarding their use of online resources for information and support. They surveyed 1500 people over the age of 18 who were diagnosed with cancer or a caregiver of someone with cancer.

The key findings are listed below.

• 89 percent of cancer patients and caregivers go online for information related to cancer.
• 49 percent of millennials go online for information the same day they receive a cancer diagnosis.
• 73 percent of millennials join an online cancer community after diagnosis — three times more than baby boomers do (23 percent).
• Emotional support is the no. 1 benefit of joining an online or in-person cancer support group, but millennials also report they’re valuable for helping them make treatment decisions.
• Millennials place a higher degree of trust in online resources than older generations.
• Half of millennials also feel the information they encounter online causes more anxiety and fear.
• 78 percent agree that the internet empowers cancer patients and caregivers to make more informed decisions and cope with fear and anxiety (71 percent).
• Boomers value their clinical care team more than Generation X or millennials do, but millennials are the most likely generation to prefer to defer to their clinical team to make treatment decisions (48 percent). 62 percent of boomers and Gen Xers prefer shared decision-making.
• About half of cancer survivors or their caregivers stay engaged in online support groups to track long-term side effects (64 percent), because they fear recurrence (49 percent), and for emotional support (47 percent).
• There’s a stark difference in the behavior of survivors by generation, with 59 percent of millennials, 51 percent of Gen Xers, and 37 percent of boomers staying engaged in groups.

The Report is divided into 13 sections such as Cancer Support Groups, Health Privacy, Social Media, Trusting Internet Info, etc. You can read the sections you are interested in or the entire report, like I did, at https://www.healthline.com/health/state-of-cancer .

I found the report reflected the use of the internet by age group that I have observed from my time as co-founder/ co-moderator of the #gyncsm Twitter Community. My only comment would be regarding the report's use of the term community versus group. They separate online communities ( Inspire and Smart Patients) from Communities found on Twitter - which they call groups. Yes there is a difference in terms of privacy but I believe if you use the definition of community - "a body of persons of common ideas scattered through a larger society" then the groups on Twitter are in fact communities. 

Enjoy your read.

Dee
Every Day is a Blessing!

Hello 2018! Changes and Challenges

On New Year's Day, it has become a bit of a tradition that I write a post about my aspirations for the year ahead.  It just so happens that today I am still thinking through my priorities and learning to use my FitBit, which I am sure will work into those aspirations, so I am going to save that post for later this week.

Instead, I am going to share with you some points made in a book I am reading. My friend, a Disney fan like I am, shared the book with me and I am enjoying reading it.  My Pride - Mastering Life's Daily Performance  is written by Alton Fitzgerald White. Alton White played Mufasa for over 4000 performances of Broadway's Lion King.

In the book, he tells the story of his life growing up and dealing with failure and success. He asks readers to challenge yourself to  :

1. Keep Sight of Your Dreams
2. Trust Your Instincts
3. Be Responsible for your Actions  and Choices
4. Develop Discipline and Define a Work Ethic
5. Take Care of Yourself
6. Foster a Sense of Spirituality
7. Commit Yourself to Service
8. Learn to Live with Rejection
9. Understand Success
10. Be In Business ( I would change this to Advocacy.) 

I think most folks, even if we aren't in show business, can benefit to think about these 10 items and how we can work them into our lives in the year ahead.

As we begin this New Year you will notice that I made a few design changes to this blog. I hope you like them.

Wishing you all a very Happy New Year!

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. 

Happy Holidays!

With Christmas fast approaching I will be taking a break from posting to this blog for the next week. Be sure to check back on the 30th for a special post.

I wanted to be sure with wish everyone...

Dee
Every Day is a Blessing!

Off Balance

A few weeks ago I was watching the TV show This is Us and the young character said she felt "off balance".

For some reason those words stayed with me. After the show ended I kept thinking back to how it feels to be "off balance". I will admit I have felt off balance many times after my cancer diagnosis.  It is a bit hard to describe how that feels but I'll give it a shot.

During treatment, I was not doing the things I had regularly done. I wasn't working. My husband and daughter cleaned the house, went food shopping and made all the meals. I learned over time that it was OK to put myself first and to ask for help. But it took some time to get that balance back.

There were times when I was in treatment when I would go out with long-time friends for dinner. I was happy to be there, yet I was off balance. I sat there with my scarf on and looked at their hair. I heard them talk about making plans for vacations or redesigning their kitchen or complaining about traffic. But I was in treatment. It didn't feel right to share how I felt so exhausted that I didn't get out of bed for two days. How my scalp actually hurt - as if my hair had been in a pony tail for days. It was like I was watching them from afar. Maybe I was a bit jealous that they could make plans because I wasn't planning past my next chemo treatment. It was like I couldn't be in the real world while I was in the "cancer world".

Then I finished treatment. Great. I should be happy. And in a way I was but at the same time I was scared. So I was off balance again. I could never go back to normal so I would have to find a new normal. But what was that? I tried but never achieved the old normal. But eventually I had a good new normal going along with the occasional bout of anxiety over CT scans , Ca-125's and doctor appointments.

There are times to this day that having had a cancer diagnosis makes me feel off balance. When I hear of a women I call friend who will be entering hospice or when a clinical trial I hope will show amazing results in treating ovarian cancer comes back equal to the current treatment I feel off balance.

I am thankful for my health care team, my husband, family and friends who help me get  my balance back.

Dee
Every Day is a blessing!