Saturday, April 27, 2013

A doctor asks, "How would you react to a cancer diagnosis?"

A post by Dr. Suzanne Koven, on KevinMD blog:
http://www.kevinmd.com/blog/2013/04/react-cancer-diagnosis.html

Since I have a cancer that will probably give me multiple opportunities to have a reaction, I figure I will probably react differently each time. Maybe I will work up to an Oscar-worthy performance by the final time I get the news that cancer has come back again. Do I think about that, or polish up my delivery?-no frickin' way. Too busy doing other things, and wondering about the mysteries of life. I will be scanned this year (took last year off - a slow cancer doesn't deserve that much notice, in my not-so-humble opinion), so I guess I will have some of the usual build-up after the tests until I get the word from the doctor if I am good to go for another period of time.
As a former active Army wife (now just an in-active one), I figure the news is similar to when we would find out it is time for a move - expected in the abstract, and you know it is coming for years ahead, but causes quite a rush of emotion when spouse gets those actual official orders. Most of my life has been knowing that I do not have significant power over my future - my health status fits into that mold, no matter how many messages they put out about preventing cancer. I can choose some paths (work hard through college, have a career that I love, family life that is fulfilling...) I have lived a pretty boring life (as far as risky behavior goes), yet still have cancer. Go figure.
What I find interesting is when I have turned down other cancer scans - mammograms, colonoscopies, whatever (I still get checkups, though). The health providers look at me in a way that makes me wish I could see what notes they are recording in my health record. My point to them - even if cancer is located in another part, I am not sure I would take on the fight against it - I know what that fight looks like, have done it admirably (if I do say so myself), and figure I am not going looking for other types of tumors to throw money or time at. If something is found during the scans for my first cancer, then I will have a different kettle of fish to deal with at that time. I am glad I rode the treatment train I did - I figure I gave it my best shot at the time to gain years before cancer comes back. But I am not looking for another train at the station, believe me. Accuse me of hubris; of being short-sighted - let me know your comments, and I will post them gladly. I will defend your right to track and attack your cancer how ever you choose- just give me the same latitude.

Dr. Koven's blog address: http://www.boston.com/lifestyle/health/blog/inpractice/

Saturday, April 13, 2013

Adenoid Cystic Carcinoma in the news

I saw this article abstract reference - sharing here, since it may contain a useful literature review, and because it refers to ACC of the Bartholin's gland.
(Ask your local medical library or public library for full-text service - charges may apply.)

Report of two cases of adenoid cystic carcinoma of Bartholin's gland and review of literature
Taiwanese Journal of Obstetrics and Gynecology
Volume 52, Issue 1 , Pages 113-116, March 2013
http://www.tjog-online.com/article/S1028-4559(13)00022-3/abstract
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Great advice from a loved one of a fellow ACC wearer, on "How to deal when someone you love has been diagnosed with cancer" http://michelynntires.blogspot.com/2013/04/cancer-sucks-how-to-deal-when-someone.html . Wishing Michelle Lynn and her mom the very best!
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Tonight (I think) is a benefit for a fellow ACC wearer, Ken Dixon, drummer for the band Steppin Back (link to their Facebook page). Saw two different dates for the event. Hope they have more than one event, actually. If you are in Pennsylvania, or just watching from your computer, please cheer Mr. Dixon on, and wish him the best for me.
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A book for sale in March 2014 at Seven Stories Press: "Relatively indolent but relentless: a cancer treatment journal", by Matt Freedman. Sure hope it turns out to be a best seller!
http://catalog.sevenstories.com/products/relatively-indolent-but-relentless-a-cancer-treatment-journal
Text from the site:


Tender, tough, funny, and unbearably beautiful: 35 hand-drawn days in the life of not just any cancer victim--Matt Freedman, artist, dog lover, husband, American hero.

From October 3 to November 28, 2012, Matt Freedman underwent radiation and chemotherapy at Massachusetts General Hospital in Boston, Massachusetts, for treatment of Adenoid Cystic Carcinoma, a rare cancer that had spread from his tongue to his neck to his lungs by the time it was discovered. This is the journal he kept during that time, his 35-day course of treatment.

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A technical paper from FoundationOne mentions ACC: http://www.foundationone.com/objects/pdf/ONE-I-002-20130412_FoundationOne_Technical.pdf 
Description of what FoundationOne is, from their site: FoundationOne™ is the first pan-cancer, fully informative genomic profile designed to help oncologists expand their patients’ treatment options. 
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Lisa Hachey from Scarborough, Maine, and diagnosed with ACC back in 2001,  has been "paying it forward" as a Buddy for others traveling cancer treatment paths. Thank you, Ms. Hachey, for giving comfort and support at the time it is most needed!
http://leader.mainelymediallc.com/news/2013-04-12/Neighbors/Support_inspiration_shared_through_buddy.html 
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Book of poems, short stories, and art: Zombies for a Cure - originally published in October 2012, proceeds go to ACCRF! (found on Blaze McRob's Tales of Horror site - check it out if you are into that genre, looks like a great site!)
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A beautiful memorial in the blog, Glutton For Life: http://gluttonforlife.com/2013/04/12/in_memoriam
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