Wednesday, February 22, 2017

CA-125xiety !

Recently there have been a number of articles written about "scanxiety".
You may read one written by an ovarian cancer survivor here.  Another was posted on Medscape aand titled Cancer 'Scanxiety' Is a Real (Terrifying) Thing. You may read it here.

In response to a tweet about that Medscape article I tweeted:

Well the past few days my CA-125xiety has kicked in.

This morning I went for the blood test so the results would be ready for my appointment with my gynecologic oncologist next week. Am I anxious? My brain says I shouldn't be nervous. I feel ok for the most part although I have been more fatigued recently. 

I've read many articles about screening using CA-125 and CT scans. One study reported last year in JAMA Oncology says, "CA-125 tests and CT scans are still routinely used for surveillance testing in patients with ovarian cancer, although their benefit has not been proven and their use may have significant implications for patients’ quality of life as well as costs".  I get it. My CA-125 result was in the normal range up a few points when I recurred in 2008. I shouldn't worry, yet I do. 

It is a funny feeling and hard to describe to one who has never been in this type of situation.  I am merrily going along in my new normal and then a sense of dread comes over me. I get anxious about finding the time to get things done. I hesitate making plans a year or two out. I start to rethink what brings me joy. What should I not be doing right now? What should be at the top of my priority list? Spending more time with family and friends goes back to the top of my list if other commitments were heading to the top.  I go on a cleaning out spree. I get rid of things I won't need if I recur. I get upset with people who "Sweat the small stuff".

I am uneasy because I know, maybe too much, about ovarian cancer. It is a sneaky disease. I know women who have gone years and out of the blue have a recurrence. Sure I can eat healthy and exercise but there is no magic pill that I can take to prevent my cancer from returning. How I wish there was.

It is difficult to get over this feeling. I try all those things that have helped me cope with this sense of apprehension in the past but I am not always successful. I will feel much better when the myQuest app sends me a notification that my results are ready to view. Good or bad at least then I will know.

Until then I will just try to enjoy each day.

Dee
Every Day is a Blessing! 

Friday, February 3, 2017

NJ/PA Spring Walks: NOCC, Sandy Rollman

 April 22, 2017 
13th Annual Sandy Sprint and SuperHero 5K/10K and Canine Sprint
Paine Park, Philadephia, PA
8am
Registration: http://srocf.convio.net/site/TR?fr_id=1040&pg=entry


May 6, 2017   
NOCC New York City and New Jersey Chapters’ 2nd Annual Tri-state Run/Walk
to Break the Silence on Ovarian Cancer®


11:00 AM  

Liberty Park,
1 Audrey Zapp Drive
Jersey City, NJ 07305


Registration: http://runwalk.ovarian.org/tristate 


If you have an ovarian cancer  walk / event you would like me to share on this blog please e-mail me the information. 
 
Dee 
Every Day is a Blessing!  

Thursday, January 26, 2017

Writing About Advocacy

I am pleased to share a piece I wrote on how to advocate for yourself and others. It appears on the SHARE Cancer Support Blog. Their mission is to create and sustain a supportive network and community of women affected by breast and ovarian cancers.

Use the link below to read A Bit of Advocate in All of Us.

https://www.sharecancersupport.org/2017/01/a-bit-of-advocate-in-all-of-us/

Be sure to check out the support programs and resources SHARE has to offer.

Dee
Every Day is a Blessing! 


Friday, January 13, 2017

NJ Events: Graceful Hope 5th Annual Benefit Dinner

 I am happy to be sharing another event in NJ to raise awareness and funds for ovarian cancer research. This dinner is being held by the Graceful Hope ovarian cancer organization. 




TICKETS ARE CURRENTLY ON SALE for GRACEful Hope's 5th Benefit Dinner to raise funds and awareness for ovarian cancer!

Date: Saturday March 4th, 2017
Location: PISC- Portuguese Instructive Social Club in Elizabeth, NJ

You may purchase them directly on link below.
link: http://gracefulhope.weebly.com/graceful-hopes-5th-benefit.html




Dee
Every Day is a Blessing!

Thursday, January 12, 2017

NJ Area Events : Teal Tea Foundation

As 2017 begins ovarian cancer foundations are planning events to raise awareness and funds for research. The Teal Tea Foundation founded by my friend, Jean Shipos, has a few early 2017 events- all teas, of course.

VALENTINE TEA
FEBRUARY 19, 2017 2:00-4:30PM
Talking Tea Cup
301 West Butler Avenue
Chalfont, PA 18914

$45 admission includes four course tea, entertainment & basket raffles
 Advance online registration required- no tickets at the door- limited seating
ALL SALES FINAL, NO REFUNDS

https://valentinetealtea.eventbrite.com

ST PATRICK TEA

MARCH 19, 2017
Talking Tea Cup
301 West Butler Avenue
Chalfont, PA 18914
 $45 admission includes four course tea, entertainment & basket raffles
Advance online registration required- no tickets at the door- limited seating
ALL SALES FINAL, NO REFUNDS
TICKETS ON SALE TIL MARCH 14, 2017

https://marchafternoontealtea.eventbrite.com

TEAL TEA

May 7, 2017
John Henry’s in Hamilton Township, NJ. 
11th Teal Tea. Theme:  The Sun Will Come Out TEAL-morrow!
Check their website in the future for information. 

  
If there are other organizations that would like me to share their events please e-mail me the information .

Dee
Every Day is a Blessing! Blessed to have so many organizations in NJ raising funds for research. 

Sunday, January 1, 2017

Welcome 2017!

Getting to start a New Year is a real blessing!

If you've read my first posts of the year going back a few years you see that I aspire to things. Some aspirations stay the same from year to 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. Some of how I do that might have to change this year because...

I aspire to spend more time with my daughter and her family and my son and his wife. In the Spring my daughter and her family will be living within 4 hours - the closest she has been since she got married nine years ago. I just can't miss the opportunity to spend time with them.

I aspire to build an even better bond with my dog Amber so we can compete at the masters level in agility.

I aspire to travel with my husband and visit at least 2 states I have not visited before. Maine is one of the two. Yes, this was on my 2016 list too. I am not sure what the other state will be.

I aspire to learn a new arts and craft technique. I love to paint so I hope to do that but I'd like to try something new too. That way I can make some more gifts for Christmas next year. 

I aspire to find a way to give back in my community or church.

I wish everyone good health , peace and joy in 2017!


Dee
Every Day is a Blessing!



Friday, December 30, 2016

Nine Years Ago

Has it really been nine years? I never thought when I started this blog on December 30, 2007 that I would be writing it so many years later. But here I am so here I write.

This year was not my most productive - this is my 41st post of the year. That is an average of only 3.4 posts per month.  In July I only wrote one post. In June,  I posted more than three because I couldn't wait to share all the research news I heard at the ASCO annual meeting. Attending that meeting as a survivor/ research advocate is a real privilege and I recommend that if you are a research advocate you apply for a scholarship to attend. Then in November I  tried the WEGOHealth Health Activist Writers Month Challenge but I ended up only writing seven posts. But I enjoyed the prompts that I did respond to.

My most popular posts of 2016 were:

So why did I blog less this year than any of the previous 8 years? I think it is due to an increase in my advocacy work over the past 12 months. I continue to  co-moderate the #gyncsm chat  (2nd Wed. of the month 9pm ET) and post on the communities blog (http://gyncsm.blogspot.com/).  This year we ran a survey so I worked with Christina ( @btrfly12) developing and analyzing the data from that survey to guide our future chats.We draft questions, invite guests, develop resources and promote this monthly chat as well as sharing on Twitter important developments of interest to the gynecologic cancer community on a daily basis. 

As a member of the  Board of the Kaleidoscope of Hope Ovarian Cancer Foundation, which raises funds for ovarian cancer research I oversee the social media (Facebook, Twitter) and the Foundation's website content.  I also volunteer with ASCO, serving as a patient representative on a tumor board and guideline panels.  Then I spent time in October working on a presentation and attending the AZ Patient Summit in Portugal. 

And of course time with family( always my first priority)  cut into the time I would spend writing blog posts. There are times I question whether or not I should continue writing this blog.  But I always come back to my original goal for the blog - to help other women diagnosed with ovarian cancer. Even if I help and support one woman a year I feel I've accomplished something.

So I will keep on writing.

Dee
Every Day is a Blessing!