Wednesday, November 30, 2016

She Gave Many Hope

I first spoke with Lois Myers in early 2007.  She had been diagnosed in 1998 with stage 3 ovarian cancer and although she had a recurrence in 2005 she was disease free then. I had reached out to her to talk about getting involved with the Kaleidoscope of Hope Foundation. The Foundation raises funds for research and awareness of ovarian cancer and was founded in 2000 by Lois, Gail MacNeil and Patty Stewart-Busso. I went to the 2007 Awards Gala and later joined the Board. When I recurred in 2008 Lois supported my decision to have surgery first  and insisted that I remain on the Board through treatment.

 2009 KOH Awards Gala (Lois, Dee, Carole)

Lois was a driving force in NJ and even in Washington DC as she raised awareness and funds for an early detection test for ovarian cancer and ultimately a cure for the disease. She also gave me hope that I could live a long life. We left the KOH Board around the same time ( I rejoined the Board earlier this year) and we stayed in touch via e-mail and Facebook.

Sadly those occasional messages have come to an end. Lois passed away yesterday, November 29, 2016.

Over 18 years as an Ovarian Cancer Survivor.  She will be missed by her community of Teal Sisters and the entire ovarian cancer advocacy community. 

Rest in Peace Lois.

Every Day is a Blessing!

Friday, November 18, 2016

#HAWMC Day 17 - A Throwback Thursday Post

It was very hard to choose one post from 9 years of blogging but I knew wanted to find one that spoke about symptoms and the impact ovarian cancer has in the world. So I chose the following from May 2013:

Every Women is at Risk- World Ovarian Cancer Awareness Day !

This is truly amazing. It is a first for ovarian cancer.
Twenty seven organizations and seventeen countries around the world are celebrating World Ovarian Cancer Day today. Women in these countries are going to wear teal, the awareness color of ovarian cancer. They will  talk about symptoms and risk factors and raise awareness. Since I was diagnosed I have often thought that there are many wonderful organizations raising awareness and funds for research but we need one voice. I am so happy to see that is happening today.

Why is this day necessary?
Ovarian Cancer has the lowest survival rate of any gynecologic cancer.
All women are at risk for ovarian cancer.
Many women think that the Pap Test is a screening test for ovarian cancer. It is NOT!
Many women do not know that there are Ovarian Cancer symptoms.
The global diagnosis rate for ovarian cancer is a quarter million women.
Approximately 6500 women are diagnosed with OC in the UK every year.
Approximately 25000 women are diagnosed with OC in the US each year.
Approximately 1400 women are diagnosed with OC in the Australia each year.

What can you do? 
Share these symptoms with other women and if they last more than 2 weeks please see your gynecologist.

Eating less
Abdominal pain 
Trouble with your bladder 

For more information:
Hope you learned something new!

Every Day is a Blessing!

Wednesday, November 9, 2016

Day 9 #HAMWC. What's your ideal day?

This one is easy.

Who would be part of my ideal day?
My husband, daughter , son-in-law, son, daughter-in-law and two grandsons.

Where would we be? 
Two choices for this one.
Close to home in Belmar spending time on the beach at the Jersey shore.
Farther from home we would all be together at DisneyWorld probably walking around Epcot or going on the safari ride at Animal Kingdom.

I will cancel meetings and rearrange things to spend time or visit family and friends. I once didn't attend an awards event - I was receiving the Spirit of Hope Award -  because I was moving my daughter and her husband to their new home.

Every Day is a Blessing!

Tuesday, November 8, 2016

Day 8 #HAWMC Little Engine post

I think I can be the support other women diagnosed with ovarian cancer need.
I think I can spread the word about OC symptoms through this blog.
I think I can make a difference in my small senior community.
I think I can lead others to speak up about their health care experiences.
I think I can teach others to advocate for themselves.
I think I can continue to post during the #HAWMC.
I think I can show others that the voices of patients are important in all stages of research.

I know I can make a difference through the work Christina and I  do in the #gyncsm community.
I know I can continue to exercise to help reduce my risk of recurrence.
I know I can make a difference by attending medical conferences.
I know I can get a few more agility titles with my dog. 

Every Day is a Blessing!

Sunday, November 6, 2016

Day 6 #HAWMC My Super Power

What an interesting prompt.

Super power?  My first thought was flying, super strength, super speed and x-ray vision.

But on second thought I'd rather my super power be the ability to help people overcome their fears and enjoy the life they have.

I know fear stops us from doing the things we might want or need to do.
Visit family that lives on the other coast when you are afraid of flying.
Enjoy life and plan ahead when you fear a cancer recurrence.
Gather the information and having your ovaries and fallopian tubes removed when you fear of a diagnosis of ovarian cancer because you have a BRCA mutation.
Leave a relationship that is harmful to you physically and emotionally because you fear the unknown and would need to be alone.
Stand up for what you believe is right because you fear that people won't like you.
Go back to school to get your degree because you fear having to study and take tests.

These are just a few examples of my super power at work.

Every Day is a Blessing!

Saturday, November 5, 2016

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. 

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!

Every Day is a Blessing! 

Wednesday, November 2, 2016

Day 2 of #HAWMC! How I Write.

When I was first diagnosed I hadn't run across very many women who had ovarian cancer. So in 2007 I decided to share my experience and information I learned about the disease with other women through this blog. I also shared awareness events in my state (NJ) so that women could make a connection with others and get involved in a local organization. Who knew almost 9 years later I would still be writing.

What I write about now includes events and information about organizations in NJ but there is a greater concentration on research news.  I make a effort to describe research results in lay terms so the average patient and their caregivers can understand drugs and treatments in the pipeline.

I used to feel guilty if I didn't write once a week on this blog. Now I write when there is information to share or I have an experience that other women might find of interest or value.

It usually takes me a a minimum of 2 days to write a blog  post. I write a draft which in many cases includes lots of blank spaces. Many times I'm not able to recall the correct words for things. All this thanks to chemobrain from 14 chemo treatments. The next day I go back and read and complete the post.

So this writing every day all at once is a bit different for me.

Every Day is a Blessing! 

Tuesday, November 1, 2016

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.
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.

Every Day is a Blessing!