Sorry I haven’t been writing as often, life has gotten busy! Mostly school….
I talked to a woman diagnosed with appendix cancer today….she was told she was terminally ill (as I was initially) by a doctor not familiar with appendix cancer. She is devastated as she has four young children. I know of many others who are told the same thing. It’s a common prognostic by those unfamiliar with our rare disease. We ALL need to be seen by an appendix cancer specialists familiar with our disease when we are diagnosed. Usually we have to travel as there are not specialists local to us (I traveled 750 miles). If you are newly diagnosed, PLEASE see a specialist before making treatment decisions! We have to be our own advocates. Many very good surgeons and oncologists just don’t know enough about our rare disease, they don’t see it often. Specialists have seen hundreds of cases. I had an initial “poor prognosis” by one oncologist and terminal diagnosis by another and am weeks away from being 10 years cancer free.
Also, I just communicated with a woman who is a 33 year survivor of our cancer! She’s the longest survivor I’ve known of so far. I asked her to write her survivor story for my web site/blog. I hope she does!
I also wanted you to check out this youtube video I happened upon almost accidentally: Distinction Between Curing and Healing by Michael Lerner PhD. There is a difference, and while we seek a cure, we need even more to be healed. I loved that he dealt with “mental healing”, and that he spoke “the toxic new age idea of keeping a positive attitude when we have cancer”. It is more healing to really deal with and experience all of the emotions we have with our diagnosis, negative or otherwise. When I was diagnosed I got very weary of all of the people who told me I needed a “positive mental attitude” to beat it…it’s not true!! A cancer diagnosis normally comes with a lot of negative emotions. Dealing with them and expressing them is a normal part of our experience. A part of our healing.
I’m in Orlando, have been here for 5 days for the conference and will leave for home early tomorrow. As always, it’s been an amazing experience. I’ve learned so much and spent time with many great survivors/advocates. I attended many presentations on cancer research. Those with a pedometer found we walk 4-5 miles a day, the conference center is HUGE!
My press conference went well, whew! Before the press conference I was in the press room…have never been in one before! They asked me who my press officer was…I’d never heard of a press officer! I think it was important that I was there, though. The speeches by the other three in our forum were on government spending for health and cancer research, and they kept trying to say it wasn’t about money but people and giving hope to people. So when I told my story after they spoke, it helped the press relate to the human element. I only had to tell my survivor story, which I know well. I did do a power point along with that showed pictures of my kids and all of the things I got to be there for…high school prom, first boyfriends, my daughter turning 21 etc. I think that helped.
I got to have dinner last night with an amazing cancer researcher I met at my first conference and whom I have on a very high pedestal, Dr.Danny Welch. He is devoted to research to learn how to make cancer not metastasize. Only about 2% of research dollars go to that cause, which saddens me. 90% of cancer deaths are caused by metastasis. If cancer didn’t metastasize, it would be a benign disease. Only a few cancers, like brain cancer, can kill without metastasizing. He discovered a gene which creates a protein that prevents metastasis, which he named Kiss1, as he discovered it in Hershey Pennsylvania. He is creating a drug related to that protein that I hope enters clinical trials soon. I’ve had so many people say appendix cancer must be an easy cancer to cure, just remove the appendix, which we don’t need anyway….but appendix cancer is so lethal not because of the appendix tumor, but because of the metastasis.
I’ll write more about the conference and attach photos when I get home!