Tuesday, January 15, 2019

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.

Every Day is a Blessing.

Tuesday, January 1, 2019

New Year Aspirations

Another year begins!

As we welcome 2019,  I wish all my followers a very Happy and Health New Year!

If you are a regular follower you know that at the beginning of every year I don't make New Year Resolutions but rather aspirations. I tend not to feel too guilty if I don't quite get to do what I aspire to do, as you will see by the repeat aspirations below. But having concrete goals helps keep me focused.

Here are aspirations from 2018 that I will continue to work on this year.

  • I aspire to continue to support women diagnosed with ovarian cancer through this blog and the  #gyncsm  community, to share my story as an ovarian cancer survivor and to promote ovarian cancer research.  ( I am excited to be attending and speaking at the ASCO Annual Meeting in June this year. More details soon.)
  • I aspire to travel to Maine in 2019.  ( This has been on my list since 2016. But I'll keep trying .)
  • I aspire to build an even better bond with my dog Amber so we can improve our work at the masters level in agility. ( My knee injury kept us out of the ring for the last 6 months of 2018.)  
  • I aspire to go kayaking. (Once again my knee injury kept me from doing this last year.)
  • I aspire to complete an online course in Genomics. (There just weren't enough hours in the day to get this done. I'm leaving this on the list though because I think this knowledge will only make me a better advocate.)
 Added to my list:
  • I aspire to spend more time learning how to work with pastels. (I took an eight week art class and enjoyed the time I worked with the pastels.)
  • I aspire to consistently attend yoga class. ( I dropped in on some classes in November and I felt calmer and more centered. ) 
  • I aspire to step away from social media for a period of time each week and make connections in person - call or visit. 

What do you aspire to do in 2019?

Every Day is a Blessing!

Friday, December 28, 2018

Year Eleven

Another year of blogging is in the books. I am blessed to be able to continue to advocate and share information about ovarian cancer via this blog. This year, we have witnessed the FDA approval of a PARP inhibitor as a maintenance drug for those with somatic and germline BRCA mutations. There were also a number of ideas for screening tests that may lead to an early diagnosis of ovarian cancer.  More work is needed but awareness of ovarian cancer has improved thanks to individuals, organizations and pharmaceutical companies.

In a quick review, I wrote thirty posts. I had hoped to do more but membership on the Scientific Review Board at Rutgers Cancer Institute of NJ (RCINJ) and prepping for twice a month meetings took time away from more frequent posting.  I find being a Board member to be very rewarding and I appreciate having the opportunity to take part. 

My husband and I also had a chance to travel to the western US to celebrate our anniversary.  Although I hurt my knee halfway through the trip, ( I am on the mend with the help of physical therapy) I was able to see some spectacular scenery.

I will leave you with these scenes and look forward to seeing you in  2019.

Every Day is a Blessing!

Monday, December 24, 2018

Best Wishes!

To all my followers

Thank you for reading and staying in touch with me. Enjoy this time of year with friends and family.

Every Day is a Blessing!

Sunday, December 2, 2018

Volunteers Needed for a Study on Self-reporting Symptoms During Cancer Treatment

Today I am sharing information about a study being done to determine the experience cancer patients have when reporting symptoms.  Sharyn Carrasco, RN, MSN, APRN is a student in the PhD program in Nursing Science at Texas Woman’s University and is conducting this study. The study has IRB approval. Please take a few minutes to read through the details about the study and reach out to Sharyn if you qualify and are interested in participating. 
 “Experiences of Self-Reporting Symptoms by Adults receiving Cancer Treatment”
Your voice is needed. Do you have cancer that is inoperable or metastatic and receiving cancer
treatment? Looking for volunteers to participate in a research study to talk about how you self-report
your symptoms.

This qualitative study is patient-focused, and the purpose is to understand your experience and
perspective of self-reporting your symptoms. There were many studies conducted over the past 10
years regarding patients self-reporting their symptoms, yet there were no studies that asked the
patients their perspective and experiences of self-reporting their symptoms. This is the reason for my
study; to talk you, the patient with cancer, about your perspective of self-reporting your symptoms. 
So, I am looking for volunteers to participate in this study to learn about how you report your symptoms. As a participant in this study, you would be asked to discuss your experience reporting your symptoms. This conversation will be with Sharyn Carrasco, the oncology nurse researcher, and can take place in person or via FaceTime/Skype. Your participation would involve 1 session, which will be approximately 60 minutes, including follow-up questions. If clarification is needed, one follow-up may occur to validate content, that may last up to 20 minutes.

If you are 18 years or older, have inoperable or metastatic cancer AND receiving cancer treatment,
please contact me for more information or to sign up to participate in this study at 713-503-4261 (text
or call) or email: scarrasco@twu.edu.

Every Day is a Blessing!

Wednesday, November 21, 2018

With Gratitude

The Conquer Cancer Foundation recently shared a Gratitude Calendar which has become the basis of this post.

Send a note to someone you appreciate telling them why:
I am writing to let all of my followers know how much I appreciate the time you take throughout the year to read and share my blog.

Who inspires you: 
I was inspired by two of the founders of the KOH Ovarian Cancer Foundation  - Gail MacNeil and Lois Myers. They welcomed me to the KOH family in 2006 allowing me to become an ovarian cancer advocate. Sadly both woman passed from ovarian cancer. Yet through the Foundation they founded the support of ovarian cancer research continues.

I make a difference by: 
I have the privilege of being a support volunteer for the Cancer Hope Network. I have spoken to over 50 women diagnosed with ovarian cancer from across the country. I hope that I have made a difference in the lives of these woman to the same extent that the CHN support volunteer I spoke to  on that fall day in 2005 had on me.

I am grateful for: 
My husband, children and their spouses, grandchildren, family, friends, teal sisters and
my gynecologic oncologists who have made these past 13 Thanksgivings possible.

Happy Thanksgiving!

Every Day is a Blessing!

Friday, November 2, 2018

Becoming a Research Advocate

Yesterday, I had a phone conversation with a stage 4 ovarian cancer survivor who was interested in becoming a research advocate. We met on Twitter and have followed each other for the past few months. She asked me questions about how I got started in advocacy and places she could go to prepare to  become a cancer research advocate. In  A Bit of Advocate in All of Us an article I wrote for SHARE 
(https://www.sharecancersupport.org/2017/01/a-bit-of-advocate-in-all-of-us/ ) I wrote about different types of advocacy. Today I want expand on that information I provided on  research advocacy. 

General Cancer Research Advocacy:

Research Advocacy Network - (http://researchadvocacy.org/)
RAN offers downloadable resources on topics such as those listed below that a research advocate can find beneficial.
Tutorial:Genomics in Cancer
Tutorial: Molecular Diagnostics in Cancer
Tutorial: Pathology and Tissue Research
Tutorial: Understanding Cancer Risk
Tutorial: Understanding Clinical Trial Design
Tutorial: Quality of Life and Patient Reported Outcomes
Tutorial: Biomarkers in Cancer

RAN also offers an online course on The Basics for Research Advocacy (http://researchadvocacy.org/advocate-institute/online-course-basics-research-advocacy)

The AACR (American Association for Cancer Research, www.aacr.org)  has programs specifically for research advocates.  I know a number of advocates, ovarian and other types, who have participated in the Scientist<-> Survivor Program at the AACR Annual Meeting."The program provides advocates with special lectures using lay language, small group discussions, and other opportunities for the exchange of information on key aspects of cancer research, survivorship, advocacy, and public policy." The deadline for the program at next year's AACR program is December 11,2018. Follow this link - https://www.aacr.org/ADVOCACYPOLICY/SURVIVORPATIENTADVOCACY/PAGES/ANNUAL-SCIENTISTHARR%3bSURVIVOR-PROGRAM-AT-THE-ANNUAL-MEETING___01696D.ASPX for more information and the online application.

ASCO / Cancer.Net
 The American Society of Clinical Oncology, ASCO , welcomes patient advocates as members at the Patient Advocate level (https://www.asco.org/membership/member-benefits/patient-advocates). This membership allows patients/advocates access to savings on registration at meetings, magazines, guidelines and volunteer opportunities.  
The Foundation arm of ASCO is Cancer.Net. "The Conquer Cancer Patient Advocate Scholarship Program provides scholarships for patient advocates to attend ASCO-sponsored Symposia and the ASCO Annual Meeting to learn of important advances in their areas of interest. Scholarships help cover travel, hotel, and registration expenses and are based primarily on ļ¬nancial need, advocacy experience, and current advocacy activities and involvement." This link (https://www.cancer.net/research-and-advocacy/patient-advocates/conquer-cancer-patient-advocate-scholarship-program) will provide information on the 2019 meeting scholarships when the application period opens.

Ovarian Cancer  Research Advocacy Information 

Ovarian Cancer Research Alliance
OCRA (ocrahope.org ), formerly OCRFA,  provides information on various types of advocacy. On their Research Advocacy Page (https://ocrahope.org/advocacy/research-advocacy/)  you can read reports on research from their advocates who attend various medical conferences and meetings. While those who represent OCRA as Research Advocates are by invitation only, the stories of a few advocates such as Annie Ellis and Susan Leighton can provide additional ideas for roles you can play in supporting research.

OCRA also has a program known as Advocate Leaders which is a legislative advocates program. (https://ocrahope.org/advocacy/advocate-leaders/

Facing Our Risk of Cancer Empowered (http://www.facingourrisk.org/index.php)
"The FORCE Research Advocate Training (FRAT) Program is a basic educational course aimed at preparing people to become engaged in research advocacy on behalf of the hereditary breast, ovarian and related cancers community. " After filling out an application and being accepted into the Training program you take part in a number of webinars. You may learn more at http://www.facingourrisk.org/research-clinical-trials/research-advocate-program.php

I hope this helps other women get started as Research Advocates. If you know of other research advocate opportunities or training please let me know and I will update this page.

Thanks T for providing the spark I needed to write this blog post. 

Every Day is a Blessing!