Thursday, January 29, 2009

Met another Adenoid Cystic Carcinoma warrior today

The author of Korean Cuisine blog commented on my blog today, and I have added a link to her blog to this one. It would be wonderful if all of us ACC folks would be able to find each other as soon as we here the diagnosis, so maybe we would know more about what to do, where to go, what has worked well for others that we might borrow to use on our own path through treatment, recovery, and possible recurrences.
I still have the dream that we can charter a cruise ship, christen it the ACC Elite, and invite all the researchers to come to us. They can have their scientific meetings and clinical visits or whatever while we relax and sip on adult beverages, indulging in conversations with each other as we please. There would be a shaded deck for those of us that just went through head/neck radiation; foods sorted by texture and non-spiced, for those of us that have lost sense of taste (and the good stuff for the ones whose taste has come back!); and plenty of ways to make memories for a lifetime to crowd over the ones we would rather not have in the fronts of our heads.
Here's to all of us ACC warriors - may we always fight the good fight.

Thursday, January 22, 2009

Met another ACC breast cancer warrior today

I have linked to another cancer blog on the right side of this page - Cyndi's A Day in a Life With Life. Cyndi tells about her experiences with having ACC of the breast - she makes the third person I know of with this rare type of breast cancer. Thinking of you, Cyndi, and everyone facing ACC.
I am sorry we get to meet in these circumstances, and still glad that we get to meet, so we know we are not alone.

Tuesday, January 13, 2009

Awareness ribbon/color for Adenoid Cystic Carcinoma?

Ok, regular readers know that I am not into the whole awareness ribbon/color thing to show support for cancer of any kind (the link goes to my good friend Jeanne's blog entries on boycott October). Others are, though, (Hi Sara C.!) and as a good librarian I have gone hunting to see if anyone has designed a ribbon or designated a color for ACC.

Oral, head, neck cancer has one, and makes pins and bracelets available for purchase on the SPOHNC site:  https://www.spohnc.org/enamel_pins.php . But if your ACC was diagnosed in a different part of your body, this one won't do. And you may not want to have the breast/lung/other location cancer ribbon to signify this very unique type of cancer. So I figure the color and theme topic is up for grabs for our brand of cancer, folks.

If someone was going to design one for ACC, I hope they follow the lead of the Live Like Andi Foundation, and make it leopard/cheetah print - in Andi's words, that IS a color!

If you or someone you know does designate a color or type of ribbon for ACC, please let me know.

Sunday, January 11, 2009

Added a new blog to my list

I have been subscribed to a blog titled: After Cancer, Now What
http://aftercancernowwhat.blogspot.com/ . You may wish to check it out, whether or not you have experienced breast cancer or cancer of any kind. The author also has a blog that lists resources relating to cancer of all types:
http://acnwresourcepages.blogspot.com/

Please let me know if you read a blog that I should link to here at Cheeky Librarian. There are many eyes that read this blog, and I want to be of help in the way of information for each and every one of them.

Friday, January 09, 2009

Adenoid Cystic Carcinoma in the news

This Maryland article mentions research into the reasons why cancer appears to be prevalent in Poolesville:
County to study possible cancer cluster: http://www.gazette.net/stories/01072009/germnew190016_32470.shtml

from the article:
"Catherine Poss, a 15-year Poolesville resident and a Hempstone Avenue neighbor of Kelly's, has no family history of cancer and has never drank or smoked. She was shocked two years ago when her doctor told her she had adenoid cystic carcinoma, a rare cancer that affects the salivary glands. But she was even more surprised to learn that a woman on her street, who was in her 30s at the time, had received the same diagnosis about 14 years ago."

There have been no genetic nor environmental causes identified for ACC at this time. Since it is a rare cancer, I am not sure if anyone is doing much research in that area - let me know if you hear something different. I have no idea why I 'caught' the cancer - I haven't ever smoked, though dated men that did; drank little; lived in Germany for three years once, encompassing bad water sources and the passing cloud from the Chernobyl meltdown (!); grew up in the middle of the country in both urban and rural areas... If they can establish a cause for those two women's ACC, many of us would like to know about it, so we can warn others how to keep from experiencing this life-changing cancer.
 
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