Tuesday, September 11, 2018

Ovarian Cancer Awareness Month Reflections

Earlier today I took part in a #WEGOHealthChat. The topic was how advocates share their story online. I tweeted that I felt being sincere and sharing both the physical and emotional side was important.

I should practice what I preach. So here I go. Let's talk about September - Ovarian Cancer Awareness Month. Having a month dedicated to all gynecologic cancers and ovarian cancer in particular makes me very happy.

Ovarian Cancer Awareness month is a good thing. Women, young and old and their primary care physicians need to be aware of the disease and its symptoms. Read more about the symptoms here .

I enjoy seeing TEAL, the awareness color of ovarian cancer,  on buildings, bridges, billboards and on ribbons all over town. I found teal on my vacation.

Teal quilt at the Oregon Trail Museum

The awareness walks and other events that raise funds for ovarian cancer research are also important. You can find OCRFA partners as well as NOCC Chapters running events in most states in the US this month.  Research is key to finding a cure and more effective treatments and some of these events are ways to raise funds for research. There were few events in NJ when I was first diagnosed in 2005. This year,  I could take part in an awareness / fundraising event every weekend and even during the week. I appreciate all the work being done by these organizations to support women diagnosed with all types of ovarian cancer.  If my knee cooperates, I hope to be walking later this month in the Kaleidoscope of Hope Ovarian Cancer Foundation Valerie O'Rouke Foley Avon walk,  which raises funds for research.

But I am going to be honest with you I don't always feel happy.  There are times during Ovarian Cancer Awareness Month when I feel SAD. I am sad when I look at my blog's Memorial Wall and see the names of  50 women and this only includes women I knew in real life not others I interacted with but I never met.

And  I am sad when I see those "walking in memory of " signs you wear during awareness walks.  I love being honored when friends add me to their "walking in honor of" list but I miss my friends. I miss Carole, Pam, Rita Kay, Lois, Courtney and so many others.

The first year the Stand-Up to Cancer show was broadcast, I was happy to see such a strong focus on cancer research. As my advocacy work increased I made friends with many who were diagnosed with cancers other then ovarian. Some even attended the broadcast.  Even now I am glad to see the  research being supported by this event but when I see the some of the presentations and hear the stories, I feel overwhelmed with sadness for those no longer with us. This year I didn't watch the Stand-Up to Cancer show. I decided I needed to take a break.

Is it "survivors guilt"? Maybe. Once the month ends I am sure the emotions I feel now will cease.  They usually do.

Do any other survivors feel happiness along with sadness this month?


Dee
Every Day is a Blessing!







Sunday, August 19, 2018

Medically Underserved Individuals and BRCA Testing Study Results - JAMA article

Knowledge of whether or not you have a hereditary BRCA 1 or 2 mutation can impact the treatment decisions of women diagnosed with breast and ovarian cancer.

Last week, researchers reported the results of an analysis of the Southern Community Cohort Study (JAMA). From 2002-2009 over 49,000 women were recruited to the Southern Community Cohort Study from community health centers in twelve southeastern states. Of those women 2002 had breast, ovarian or both cancers. Of that group 718 (62% black and 33% white; 689 breast cancer and 30 ovarian cancer) were covered by medicare. Sixty-two percent of the women reported an annual income of less than $15,000. Ninety-two of the 718 women would qualify to have Medicare cover the cost of BRCA testing.

Amy Gross, PhD Vanderbilt University reported that of those 92 women only 8 had BRCA testing within five years of diagnosis.  Analysis of the medical records from the twelve states showed that Arkansas, Louisiana, Tennessee, and West Virginia had zero tests.  When data from 2000-2004 was examined it was found that no eligible women were given a BRCA test. Later years showed an increase in testing but in 2010-2014 only ~ 15% received the test. “This testing rate is lower than what I have seen reported in terms of any other study with the same time and eligibility constraints,” Gross said.(VUMC Reporter) The numbers did improve over time

While the sample size is small there could be a few reasons for why the numbers are so low including lack of interest on the part of the patient, lack of referrals for testing by physicians or lack of available resources. The researchers concluded that "novel strategies are needed to ensure that medically underserved women with cancer receive appropriate referral and access to genetic testing."

After reading this report I wonder...
How these numbers from medically underserved individuals compares to women covered by other insurance plans and/or those treated at larger cancer centers during the same time period?

We know that BRCA status is critical in deciding which treatments a women with ovarian cancer provide the most benefit but it also impacts the ability of family members to reduce their risk of breast and ovarian cancer. What can we do to insure that all women diagnosed with epithelial ovarian cancer have access to BRCA genetic testing as recommended by the SGO.

Dee
Every Day is a blessing! 

Monday, August 13, 2018

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! 

 

Saturday, July 28, 2018

13 years? Yes it is.

I remember waking up from surgery on July 29th, 2005 to the words " You have stage 3B ovarian cancer". And then the words," I will do everything to make you well".

My life changed with those few words in so many ways. If you have followed this blog since 2007 you know that it hasn't always been easy. But I have made it through with the help of my outstanding physicians and nurses at Rutgers Cancer Institute of New Jersey,  the help of my best friend and husband Nick, the support of my children and their spouses, the love of my grandsons, supportive family and some of the best friends anyone could ask for.

Have there been side effects? Sure. Do I still have neuropathy in my toes? Yes. Do I still experience chemobrain? Yes. If I am multi-tasking my word recall diminishes dramatically which at times could lead to a few good laughs. Have I had some really stressful times? Absolutely. To this day, about a week before my scans and blood work, until I hear my test results, my anxiety level goes through the roof. Does my mind still go to cancer whenever I have an ache or pain? Honestly, even now, yes it does. Does it stay there for long? Usually not. 

But most of the time I am having fun living my life and trying new experiences. How can cancer bring you good things you ask? For me, having an ovarian cancer diagnosis lead me to become an ovarian cancer research advocate. I have been able to take part in projects to increase cancer research funding. I've attended medical conferences as a voice for ovarian cancer patients. I  have traveled to Chicago, Maryland, Washington, DC and Lisbon. I've been a panel member for three ASCO Guidelines, and co-authored a book and journal articles. ( And another one is in the works.) And I have met so many amazing patients, physicians, researchers and writers along the way.

And these extra years have let to new experiences too. There have been weddings, graduations, births and trips to some spots on my bucket list. I started painting when I was in chemotherapy and I continue to find it a very calming activity. I paint mostly animals - dogs usually but a few cats and birds too.  And I love painting quilts ( I'm not so good at sewing quilts but love the symmetry in the designs. ) After my recurrence, I learned how to do agility with my dog, Amber.  I'm not fast - Amber is- but I love spending time with Amber and being around people who love their dogs.

So thanks for taking this journey with me. And now a special shout out to Dr Lorna Rodriguez and Dr Darlene Gibbon. My life savers for making this all possible.

Dee
Every Day is a Blessing


Friday, July 20, 2018

Blogs and A Decision

For the past few weeks I have spent most of my time with my children and grandchildren. It was a fun time swimming and exploring new things, drawing and creating things with them. Now that they have headed to their new home, I have time to get back to writing posts for this blog. But I had a problem. What do I write about? Seems that for the past week I have had "bloggers block". 

Then yesterday, in a Facebook group I belong to, I ran across a post by a women with ovarian cancer who shared a link to her latest Cabernet and Carboplatin Blog post "Identity". As I read the post I could relate to how she was feeling and I loved how Carol wrote. I thought to myself that her blog would be a great one to add to the list of ovarian cancer blogs I created on Listly.ly (https://list.ly/list/NRQ-gynecologic-cancer-blogs ). There is a link to the list in the right column of this blog. 

The list I created a few years ago includes blogs written by women diagnosed with ovarian cancer or their loved ones. It does not include single blog posts by patients, survivors or caregivers appearing on other independent, patient or awareness organization websites. It had been so long since I did an update that I had to look up the password to access the list.  I added Cabernet and Carboplatin. Then I "googled" ovarian cancer blogs and found two other blogs that I was not familiar with but liked the posts I read. So I added these blogs written by young women, Finding Cyril - The Musings of a Young Woman Diagnosed with Ovarian Cancer and Let's Kick Ovarian Cancer - A Journey with Ovarian Cancer at Age 26 , to my list.

After making the adds I started going through the list. Afew of my survivor friends, including a few from the UK are still writing.  Then I found a few blogs in a row where new posts haven't been made for over two years. Why did these women choose to stop writing their blog? In one case I am friends with the woman on Facebook so I know she is doing OK. But in many of the other cases the last post related to decisions about hospice and facing death or posts from family members. I was overwhelmed with sadness that after so many years so many women's lives are still  lost to ovarian cancer.

Now I am in a quandary. Do I leave those blogs where women haven't posted in a number of years? Or do I delete those blogs from my list?

Then I thought about my "On this Day"  that showed up this morning on Facebook.

Eleven years ago my friend Courtney had posted:

"Hey Dee... just wanted to say hello and thank you for the cards you've sent my way. They've made me smile :) Hope you're having a good summer! "

She passed away in 2011, yet this morning I read that memory and I smiled and thought how blessed I was to have known this dynamic and amazing young woman. 

So for now I will be leaving those blogs in my list. My way of never forgetting the women whose journey ended but who lives blessed so many of us.

Every Day is a Blessing!

Dee



 

Sunday, June 17, 2018

Healing Hope and Survivorship

Last weekend, I attended the 2018 Rutgers Cancer Institute of New Jersey's Survivor's Day. Over the past 10 years, I have attended a number of Survivor Day events and heard many wonderful advocate/speakers from Valisia LeKae to C Vivian Stringer to Bruce Feiler.



This year the keynote speaker was survivor, physician and cancer advocate Wendy S. Harpham (http://www.wendyharpham.com/). During her keynote speech I found myself shaking my head in agreement. You see she was talking about hope - Healing Hope in particular - an  how we can be healthy survivors. 



Many of the points she made were part of her latest book- Healing Hope Through and Beyond Cancer. As part of the day, we were each given a copy of the book to take home. The book includes graphics to describe each topic.

Over the past few days I have been working my way through the book. This page, Don't Wait and See ... Live and See, is one that I felt really spoke to those of us survivors who worry as we wait for scan results.




"I have today.While waiting for news or anything else I'll live and see"


Great advice!

If you are a survivor or a caregiver I strongly recommend that you purchase a copy. You can find it on Amazon by visiting here.

Dee
Every Day is a Blessing!

Tuesday, June 5, 2018

#ASCO18 Twitter Highlights June 4, 2018

Many gyn cancer research topics as well as survivorship issue  were covered on Monday at the ASCO Annual Meeting.

If you were at the meeting and think I missed any important developments please share a link to it in my comments section below.

Genetics / Genetics Counseling




Risk Reducing Surgery




CA-125


Endometriosis and Cannibis Treatment
Mindfulness

Neuropathy


Patient Reported Outcomes- Pain
Enodmetrial Cancer- Posters

Ovarian Cancer - Posters

Fertility Preservation

Metformin in Cancer Treatment

HIPEC

Palliative Care

Recurrent Ovarian Cancer

Neoadjuvant Chemotherapy - OC

 Further details may be found at 

Cediranib and Olaparib for recurrent OC
Further info may be found at


Thank you to all the researchers , advocates, and cancer centers who tweeted from this year's Annual Meeting.

Dee
Every Day is a Blessing!


 
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