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, April 5, 2008

California here I come!

I have been honored in that I was invited to attend the Annual Meeting of the American Association for Cancer Research as part of their Scientist<-->Survivor Program in San Diego, California this month. I was very grateful for the invitation.

I will leave on April 11 and return to Chicago on the 16th. I will be meeting scientists involved in cancer research along with other survivor advocates from all over the country. I will be able to learn what is currently in the forefront of cancer research.

I am not exactly sure what to expect as I have never attended an event like this before, but I have received an itinerary that has a pretty packed schedule of events, meetings and opportunities that I will participate in while there. I'm sure it will be the experience of a lifetime. I have been assigned a mentor and two cancer scientists. I will also be privileged to meet Dr. Andrew Lowy, one of the renowned HIPEC specialists, while there. I have recently been working on a poster about my advocacy efforts that I will present there.

I hope to post to this blog if I can while I am attending, I believe my hotel has wireless access and I will bring my laptop. I want to let you all know what I learn there.

This event will also mark the unveiling of a non-profit organization I have recently founded, the Abdominal Cancer Connection. My organization is in it's infancy and was granted 501(c)3 status by the Federal government just this week. I have chosen a small board of directors, they are wonderful people who are very supportive of me and my cancer advocacy. I hope to have my first board meeting soon. I am also in the process of putting together a medical advisory board. I will construct an organizational web site in the near future as I obtain initial funding.

My organization will provide education and support to those diagnosed with advanced abdominal cancers (peritoneal surface malignancies) originating from the appendix, but also from abdominal sites such as the colon, stomach, small bowel and pancreas in addition to primary peritoneal cancer.

All of us diagnosed with these cancers are candidates for some of the same treatments provided at some of the same hospitals by some of the same specialists. We all face the same obstacles and issues associated with diagnosis and treatment including understanding the disease and available treatment options,accessing medical and surgical treatments, travel and housing related treatment needs, insurance issues, dealing with post-op physical, emotional,and nutritional issues, caregiver support and childcare issues...the list of obstacles we all face is huge.

I want my organizations to be able to offer education and support to all of those diagnosed with advanced abdominal cancers as they deal with all of these obstacles. Hopefully in the end the organization will also be able to fund research into these cancers.

I've been in the abdominal cancer community for a long time and see the needs daily. I want my survival to make a difference to others struggling with these cancers. I hope my non-profit will be the avenue that allows me to make a difference and to support others newly journeying on this very difficult road.

1 comment:

Pammy said...

I hope you have a great experience in San Diego!

I will be waiting to hear what you learn!