My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Wednesday, March 30, 2011

Press Conference!

I'm leaving for Orlando this Friday to attend the 102nd  annual meeting of the American Association for Cancer Research.  I will be a mentor for new advocates this year, something I'd really hoped to be able to do one day, and now I am! I have three new advocates from all over the US and one from New Zealand.  I'm hoping to do a really good job!  Being at the conference is very overwhelming, especially for first time attendees. 17,000 attend, the convention centers are about six city blocks long and two to three stories high and there are hundreds of scientific presentation.  One former participant talked about his "shock and awe" at attending his first conference.  I was overwhelmed when I attended my first conference.  I'm trying to help my mentees be less overwhelmed.

Then early this week I was asked to be part of a press conference at the meeting.  I've never done that!  The press conference is in regards to proposed government cuts to the National Institutes for Health, which would decrease funding for cancer research.  A former congressman, a cancer research scientist and myself will be at the press conference.  They wanted a survivor who had benefited from cancer research...that would be me!!  I even have a media coach now!  I wrote out my presentation.  Please wish me luck!  I'll let you know about it when I get back.  A few friends say they are sending prayers my way...I'm very grateful for that!

Sunday, March 27, 2011

For anyne interested in participating (I will!) below is information I was sent by Jessye Cohen, a doctoral student, about a survey for a study being done at Virginia Commonwealth University about social support networks after a cancer diagnosis.  I have participated in on-line and face-to-face support groups, so am interested in the subject.  While I think I prefer face-to-face support, for rare cancers like ours,on-line is sometimes a necessity.  They are really needing participants, so hope you will help!
Carolyn

Researchers at Virginia Commonwealth University are conducting a survey of individuals who have been diagnosed with cancer in order to understand use of different social support resources. If you are over age 21 and have been diagnosed with cancer, you are eligible to complete a 30-minute survey about your experiences using web-based and other tools or support groups. Please follow this link for more information and to participate in the survey:
http://tinyurl.com/SupportSurveyVCU  Please feel free to contact me at s3jcohen@vcu.edu with any questions or for more information.

Thank you for your time,
Jessye Cohen
__________________________________
Jessye Cohen, M.S.
Adjunct Instructor
Doctoral Student, Counseling Psychology
Virginia Commonwealth University

Friday, March 25, 2011

Update!

Sorry I have not been posting more...been kind of overwhelmed with school and getting ready for my upcoming trip to Orlando for the 102 Annual Meeting of the American Association for Cancer Research.  Since I have more of a leadership role there this time,I'm kind of obsessed with doing it right!  I was asked yesterday to participate in a press conference at the meeting and agreed...what an honor!  But more I need to prepare for!  It will be a forum with myself, a former congressman and a scientist devoted to cancer research participating.  The topic will be the proposed government budget cuts to the NIH, which will negatively affect cancer research.  Wish me well!  I hope I can do a great presentation there and represent all of us who have been diagnosed with cancer.  I leave for Orlando in a week, and hope to post from there.

Wednesday, March 2, 2011

Podcasts: The Human Side of Cancer

I'm sorry it's been so long since I've posted here!  School is keeping me very busy.

I wanted to make all of you aware of a great podcast series being offered by CR Magazine.   The podcasts feature Dr. Jimmie Holland, a psychiatrist who works at Memorial Sloan Kettering helping cancer patients deal with the emotional issues surrounding a cancer diagnosis and treatment.  She wrote a wonderful book I read shortly after my diagnosis, "The Human Side of Cancer: Living with Hope, Coping with Uncertainty".

The  podcasts series is available here: The Human Side of Cancer.  I especially liked the second podcast re: cancer myths...and there are many of them (such as we have to have a positive attitude to beat cancer).  Two of the podcasts are already available, the rest of the series will be published by Friday. They are well worth your time!