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.

Saturday, January 15, 2011

Article

Some cool things about the newspaper article....since it was published I received a card from our superintendent of schools.  She loved the "Knowledge is Power" that was in very large bold letters on the newspaper article (but not the on-line version).  Knowledge IS power for those of us diagnosed with rare diseases.  We so need to educate ourselves...many very good physicians and surgeons may know little about our disease and it's treatment, we so need educate ourselves and become our own advocates.

I also heard from someone who grew up in my neighborhood as a child. I left home at age 17, so I knew her almost 35 years ago!!!  She remembered me! I heard from the attorney who helped me found my 501(c)3 non-profit, we've not been in touch for a few years. I heard from a woman I communicated with almost 5 years ago...she had tried for many years to have a child, and on delivery of her first long-awaited child she was discovered to have appendix cancer. My heart so went out to her...can you imagine waiting almost a decade for a child, only to discover you had advanced cancer on the child's delivery? Your best and worst day being the same? She is now a four and a half year survivor, her son is 4 1/2 years old.  How cool is that??  And my web site hits have tripled as a result of the article, maybe that will help increase awareness.  Cool also that the web site redesign was completed  before the article! 

I have also been contacted by a woman with appendix cancer who lives in my town, and by another woman who will be attending college with me starting next week. She is going to school to be an RN after losing a loved one to abdominal cancer, she hopes to be a better advocate as an RN.

And thanks to those of you who have signed up to our new facebook site and blog group. We truly need to connect with each other. We can support each other in ways no one else can, however well meaning they may be.  Only those who have traveled our road can best understand us.  I appreciate all of you who have joined "the group". Way to go!!!

Friday, January 14, 2011

Newspaper Article!!

I was honored to be interviewed by a large local newspaper, they published the article today, you can read it here Knowledge is Power .  It was on the front page of the paper!  Hopefully it will help more people become aware of our disease.

Cool thing, after the paper came out I received a call from our Cancer Resource Center.  It is affiliated with a research center working with clinical trials, but offers support groups and counseling to those struggling with a cancer diagnosis.  Years ago, after my diagnosis, I joined a support group there for a short while. They have now asked if I would be willing to come speak to their patients who are so desperately in need of hope.  I'll be thrilled to do that!!

Saturday, January 8, 2011

Facebook

The Appendix Cancer Connection now has a Facebook site. Take a look when you have time!  I am going to use the "Discussion" feature, I've already posted a query there: how many of you with appendix cancer were initially misdiagnosed, and how many, when correctly diagnosed, were referred to HIPEC or EPIC specialists?

I've known of several who were misdiagnosed as colon or ovarian cancer...one woman I know was treated for ovarian cancer for almost 5 years before being correctly diagnosed, she has since passed.

On a personal note, I am excited!  I have been a part of the American Association for Cancer Research's Scientist-Survivor Program as an advocate since 2008.  I was recently asked  to be an advocate mentor!!  It was a position I'd hoped to apply for  a year from now, I didn't know I was eligible for it yet.  It was a privilege to be offered the position.  I will be a mentor for new advocates in Orlando in April of this year at the AACRs annual meeting. 

I remember how overwhelmed I was when I attended my first annual meeting.  The convention center was in a city I'd never been to,was about 4 city blocks long and a few stories high.  17,000 people attended and I had to choose what to attend from a book as thick as a phone book of hundreds of lectures offered.  I missed attending some things I would have benefited from, got lost a lot and made some poor choices in what I did attend.  I was too intimidated to step up to the microphone to ask questions following lectures.  I felt I couldn't approach many of the renowned scientists at the meeting (they are very approachable!).

Four conferences later, I do much better!  Now I will get to help those who come and are overwhelmed  feel less overwhelmed, and will be able to help them make the most of their time there.  I never give out my cell phone number, but will give it to those I am mentoring at the conference.  I so want them to be able to make the most of the opportunity!  And it is a great opportunity!