I think back over the last 17+ years and all I can say is, "Wow! What a ride!"
Since diagnosis July 21, 2003 life has had many turns and speed bumps. At times things seemed to go very fast; other times just a snail's pace. I keep thinking I have reached a point of establishing a new normal just to see almost everything different.
I have seen so many people lose their lives to this horrible disease. I know even more who have successfully lived cancer free for years only to develop problems from the treatment. There is no doubt, the treatment is brutal. Life is altered forever and at times it seems overwhelming.
When I was diagnosed it was rare to see young people with head and neck cancer. Every day there are more and more people diagnosed. I think of the young people I know with this disease and it angers me. This is supposed to be "older" people that have head and neck cancer. With the knowledge gained regarding the HPV link, we are seeing some great developments with new treatment options.
Radiation was supposed to cure me of cancer but now it seems more inevitable that radiation will take me along with the cancer. I struggle with this knowledge and I am doing everything possible to slow that down. I find this unbelievable and although I was reminded how risky the treatment would be I do not believe I ever heard it could kill me in those warnings. If I had to do it over again I am sure I would do the same thing because there are not a lot of options in treating this disease. I believe medicine needs to change from a "one size fits all" approach and find treatment with high success rates and less brutality on the patient.
I believe the Oral Cancer Foundation is the most science-based oral cancer website available. Not only can you find an answer to any questions about oral cancer, there is a forum with over 10,000 members that have either fought this disease as a patient or as a caregiver. Either way, the knowledge is very useful. The Oral Cancer Foundation has made great strides in promoting awareness through early detection, prevention from an HPV perspective, education of patients, healthcare professionals and awareness events.