Friday, November 30, 2007

Adenoid Cystic Carcinoma time capsule from the web

Over the past few months, I have been using my librarian hunting skills and web search services and archives to locate other sites that discuss in some fashion Adenoid Cystic Carcinoma. These links are either from or about specific people, or research that has gone on in the past on this disease. I am linking to these only as an archive of sorts on my blog, as a way to keep the individual stories going.

If you know of other links that I have missed, just send them on to me in a comment. Remember - I have comment moderation turned on, so I have to forward your comment to the blog. It won't show up automatically. I am on the 'net daily again now, so your comment should show up soon.

Blog: The Party's Over - by Kelly, an ACC survivor (not an active blog)
http://chinookbug.blogspot.com/

An MSN Group for Madison, a survivor that was diagnosed with ACC at age 8 in 2001
http://groups.msn.com/MadisonsACCsite/

For some reason, the journal Nature has a ton of ACC images on its site. The link is to a specific Google images search.

Dan Sullivan's story on the LoveHopeStrength site: http://lovehopestrength.com/everest/archives/category/trekkers/dan-sullivan/

William L. Heiberg's obituary at the United States Military Academy site: http://www.aogusma.org/Class/1961/Heiberg.htm

The Penny Brohn Cancer Care (formerly Bristol Cancer Help Center), a complementary therapy center in the UK, has a story in their 2004 newsletter about Robert Ross, an 8 year survivor of ACC: http://www.canceractive.com/page.php?n=444

Cristina's Wings - the Cristina M. Tolentino Trust Foundation. This Foundation was formed in 2006, and "supports and encourages children for higher education." The foundation also provides grants to schools. Ms. Tolentino's biography is linked off the foundation page: http://www.cristinatolentinofoundation.org/

An About Me page by Gervase Markham, an ACC survivor in the UK: http://www.gerv.net/aboutme.html

A tribute to Janet Trevor on The Yul Brynner Head and Neck Cancer Foundation site: http://www.headandneck.org/about/trevor.htm
This woman's story and how she lived her life was an inspiration to me when I thought they would be taking my ear. This is where I got the idea of a prosthetic ear for every holiday, folks. I hope I live my life half as well as she did hers.

Sandy B.'s story at the Massachusetts General Hospital Cancer Center site: http://www.massgeneral.org/cancer/about/environment/wallofhope/sbaer.asp
She was diagnosed with ACC in 1996.

Kathryn (Kit) Kane's story on the M.D. Anderson newsletter site: The First Step is the Hardest http://www.mdanderson.org/publications/network/display.cfm?id=DFA6463C-8FC7-11D4-80FA00508B603A14&method=displayFull&pn=8F5F110C-A318-46EA-8D0BD00E7D3770ED

Links to Parotid Tumor Information: http://www.patientsforum.com/Link4.htm
This site helped me a lot last summer by seeing other's photos, when I faced my own parotidectomy.

Terry Carson's story about receiving IMRT therapy, on the Varian Medical Systems (radiation machine company)'s site: http://www.varian.com/pinf/cps166.html

Linda A. Petersen's memorial on the Wisconsin School Music Association site: http://www.wsmamusic.org/LindaPetersen.htm . She was one fine lady. Among her many honors, the WSMA music library was named after her.

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