Coming Full Circle with LiveSTRONG and The Cancer Survivorship Research Conference

As many of you know, in 2006 I attended the first LiveSTRONG Survivors Summit. Attending that meeting is what launched my work as a cancer advocate and allowed me to network with a number of other survivors who I continue to be friends with.

This past week once again the LiveSTRONG Foundation played a role in my continued advocacy work. They chose me to receive one of twenty scholarships to attend the Biennial Cancer Survivorship Research Conference: Advancing Survivorship Through Multilevel Collaboration in Atlanta, Georgia. The Conference is co-sponsored by the Center for Disease Control and Prevention, the National Cancer Institute,  the LiveSTRONG Foundation, the Department of Health and Human Services and the American Cancer Society. I am so thankful to the Conference planning committee for including survivors and advocates as conference participants and to LiveSTRONG for providing the informative Survivor Advocate program  and supporting my attendance at this amazing opportunity.

While at the Conference I tweeted in real time using the hashtag #CASurvConf. Below is a sampling  of my posts. You can see even more tweets about the conference if you search on Twitter for the conference hashtag.

Informative session re: big data. Good to see PRO being included. #CASurvConf
— Women of Teal (@womenofteal) June 20, 2014

PRO- Patient reported outcomes

Ganz: survivorship is a chronic disease and we need to use that to move things in Congress etc. #CASurvConf
— Women of Teal (@womenofteal) June 20, 2014

Orby: need to understand cancer characteristics and co morbidity in selfmanagement #CASurvConf
— Women of Teal (@womenofteal) June 19, 2014

Salner: one survivorship visit is not enough . Need to find way to fund continuous monitoring #CASurvConf
— Women of Teal (@womenofteal) June 19, 2014

Mohile: Geriatric assessment can ID patients at risk for increased toxicity. Chemo leads to neuropathy leads 2 falls in older #CASurvConf
— Women of Teal (@womenofteal) June 18, 2014

Goodman : guidelines need to include co-morbidity #CASurvConf
— Women of Teal (@womenofteal) June 18, 2014

Yes we do “@sfuldnasso: Ellen Stovall: "We need a well-funded cancer survivorship program in this country. There's no excuse." #CASurvConf”
— Women of Teal (@womenofteal) June 18, 2014

Although I will not be reporting on every session I attended during the 3 day conference, I will share some insights into the research and topics I found most interesting.  I will cover these topics :

Social Ecologic Methods related to cancer Survivorship - Part 1
Session Highlights -Part 2
Survivorship Guidelines- Part 3
Ovarian Cancer Studies- Part 4
Interesting Interactions - Part 5

Be sure to check back for more information.

Dee
Every Day is a Blessing!

Celebrate Survivorship at Relay for Life

The ACS will be honoring all cancer survivors at its Relay for Life Events. Check out the various locations in NJ and be sure to RSVP if you plan on attending the reception.

Thanks ACS

Dee

Every Day is a Blessing!

Two new social networks- Treatment Diaries & What Next

During the past few years , I've heard from other Ovarian Cancer survivors how much they wanted to link up with other survivors. I ran across two relatively new social networking groups that might be of interest to my readers.

TREATMENT DIARIES Your Diary, Sharing Healing. (http://www.treatmentdiaries.com/)

This social network is for those living with or caring for someone with a chronic illness. It is a place where you can share your experiences and connect with others who are facing the same challenges. This group is not limited to cancer patients and includes caregivers, family members and advocates. Your posts can be private or shared with others. It is free.

WHAT NEXT Connecting with the Cancer Community

(http://www.whatnext.com/)

This community was developed by the American Cancer Society and connects you with resources and other survivors on the cancer journey. You enter your experiences into the site and the program matches you with others in your geographic area who are on a similar journey. It also makes recommendations to others ( based on your experience) giving them an idea of what to expect on their journey. There were 61 ovarian cancer/fallopian tube survivors sharing their Journey.

Dee

Every Day is a Blessing!

SRA Reading Programs and Chemo Brain

When I was attended Catholic elementary school we used the SRA reading program. It was an individualized reading program where you read a short story and answered multiple choice questions to check your reading comprehension. After completing the stories at one color level you would move on to the next color level. I remember the goal was to get to Purple (or was it Gold?) at your grade level and move on the next grade's program.

I loved to read back then and still do. One of the first things I did when I moved to our new home was to sign up for a Mercer County library card. Hightstown has this quaint brick library right by Peddie Lake. I've visited it a number of times since we moved in. I've borrowed cookbooks, novels , and a book on the history of Hightstown.

During my last visit to the library I noticed a book called A Kingdom Strange The brief and tragic history of the lost colony of Roanoke. I borrowed it because it deals with a similar time in history and region of Virginia that my son has researched for his master's thesis in history.

So I started to read it. I read the first 5 pages on the first day, started over on the second day and read the first 5 pages and 15 more. The next time I picked up the book a few days later I had to go back and read over the previous 2 pages to get my place. Frustrating. I noticed over the past 4 years that I can't remember details of what I read as well as I used too - I used to be a "Purple" level reader. I can remember themes but those details - character names, dates - they just are difficult for me to remember. Before I wrote the post on the Elizabeth Berg character I reread the last 5 chapters of the book. When I spoke to my son I told him I was reading the book. I also mentioned that I didn't know that the leader of the Roanoke colony committed suicide because he left the colony to get aid and when he returned everyone was lost. My son said " Mom - I wrote about that in my thesis" . I read his thesis about fear in Jamestown in the early 1600's twice so I was a bit upset that I did not remember that big detail.

I know that I am more easily distracted now. I need to write myself notes to remember to do things and I've started to take notes on long articles & books that I read so that I can remember content better. Maybe I don't remember because I am trying to do too many things at one time or that I am getting older. But I think a big portion of not remembering what I read is chemo brain. I seemed to have gotten worse after finishing the chemo for my recurrence.The American Cancer Society has an interesting page on chemo brain. I experience many of the symptoms listed there. As cancer survivors live longer we sure need more research into the issues of what causes chemo brain and ways to prevent it.

I enjoy reading too much to give it up so I'll just keep plugging away even if I am back at the "orange " level. I'll just reread things if I have too. And keep correcting and revising things that I write.

Dee

Every Day is a Blessing! I am blessed because I still have good eyesight and can read- even if I don't always remember what I read.

Melanoma Awareness Night with the NETS

Nets Basketball has teamed up with the NJ Governor's Task Force on Cancer Prevention, Early Detection and Treatment, the American Cancer Society, along with a host of hospitals and cancer-related foundations for our 1st Annual Melanoma Awareness Night on Wednesday, December 16th, 2009. Devin Harris and the Nets will match up against Carlos Boozer and the Utah Jazz at 7:30 pm.

Please join us for a fun filled night of NBA excitement and a great cause! Tickets are discounted and start at just $30! Proceeds from this special offer will benefit Choose Your Cover Campaign, educating individuals on the importance of protecting one’s self from the sun’s UV rays.

Several of the participating hospitals and cancer-related foundations will be conducting free melanoma screenings from 5 pm to 7 pm at the IZOD Center. Melanoma information will be distributed on the concourse.

Click on the link below to access the offer. Use special offer code nets.

http://letsgonets.com/tickets/groupsales/Melanoma09-10.html

Tickets will be emailed to you within minutes of purchase.
To order tickets by phone or e-mail or for any questions, please contact Christie Freid, Nets Basketball,
at (201) 806-3776 or cfreid@njnets.com.


Every Day is a Blessing!

A New Book- What Helped Get Me Through

Dr. Julie Silver,a breast cancer survivor and assistant professor at Harvard Medical School wanted to write a book to "provide hope and reassurance for those who are struggling with the cancer experience". She approached the American Cancer Society,set up an online survey and contacted cancer organizations and their members to share how they got through their cancer diagnosis and treatment. She enlisted quotes from leaders in the oncology field and well-known cancer advocates like Lance Armstrong and Carly Simon. Hundreds of survivors filled out the survey which lead to the newly released book
What Helped Get Me Through- Cancer Survivors Share Wisdom and Hope

Since I filled out the survey my copy of the book came in the mail the other day with a nice thank you from Dr. Silver. She chose five of my quotes to include in the book.

I've just started reading the book and appreciate reading all the survivors quotes.

Thanks Dr Silver and ACS for publishing this book.

LIVESTRONG

Dee
Every Day is A Blessing!

"Fight Back Express Coming to NJ"

Info from CINJ:

The Cancer Institute of New Jersey will host the American
CancerSociety's CAN "Fight Back Express Bus" on Thursday, May 29th from
4:00pm - 5:00pm in front of CINJ at 195 Little Albany Street.  The
"Fight Back Express Bus"  is on a six month tour across the United
States to make cancer issues a national priority.  During it's stop at
CINJ, the only NCI Center stop in the tri-state area, individuals will
have an opportunity to sign the bus and learn about the American Cancer
Society's important issues including the need for increased federal
funding for cancer research and access to health care. As part of the
Bus's stop at CINJ, ACS will hold a brief press conference to bring
attention to their issues.  The details of the press conference are
still evolving but, we hope to have several public officials attend.We
hope you will take a few moments to attend the press conference and
visit the "Fight Back Express Bus" when it is at CINJ."

Dee