Friday, August 24, 2012

"[cancer] The medical and life logistics of treatment"

Having cancer is hard work - for patients, survivors, supporters, caregivers, everyone.

Sharing a link to this very informative post with permission from the author, Jay Lake:
http://www.jlake.com/2012/08/22/cancer-the-medical-and-life-logistics-of-treatment/

In the post, Mr. Lake shares a list of the logistics he is dealing with as a State IV colon cancer patient, newly diagnosed with his 3rd metastasis. Please take a look at that list - if you or someone near you is facing cancer, that list gives you a chance to see where you might be able to help, or at the very least, acknowledge their path.

This librarian is grateful for permission to share Mr. Lake's post. I already knew of Mr. Lake through his excellent writing (science fiction and fantasy - please, check out his bibliography and read his work!).

Sunday, August 19, 2012

Congratulations to the UAE on starting up their cancer registry again

I saw this in the news: Cancer registry new weapon in war against UAE's third biggest killer
http://www.thenational.ae/news/uae-news/health/cancer-registry-new-weapon-in-war-against-uaes-third-biggest-killer

The Ministry of Health is starting up a national cancer registry again, after a previous attempt in 1998 lost national coverage in 2001 (it still exists, just covers a smaller area). A quote from Dr. Anwar Al Hammadi explains why a national registry is so important:

"The ministry, HAAD and the DHA can work together to make this happen," he said. "There are so many forms of specialised treatment, including non-surgical measures.
"A registry would allow us to note the trend, track the patients and treat them accordingly. It's absolutely necessary."
Here in the US, we don't have a national registry. We have a National Program of Cancer Registries http://www.cdc.gov/cancer/npcr/, which supports local, state, and territory registries. You can go to their map and click on your state to be able to see cancer incidence data: http://apps.nccd.cdc.gov/dcpc_Programs/default.aspx?NPID=3
Here is the Nebraska page, just for example: http://apps.nccd.cdc.gov/dcpc_Programs/default.aspx?NPID=3&PID=167
We also have some population-based cancer registries that feed data to SEER: Surveillance Epidemiology and End Results http://seer.cancer.gov/registries/list.html . 
In case you want to know more about becoming a cancer registrar, or wonder what they do in their career: http://www.ncra-usa.org/i4a/pages/index.cfm?pageid=1
Other information on cancer registries - let me know if you find other sources:
Australasian Association of Cancer Registries (the association's link was down -I located this page covering information) http://www.spacetimeresearch.com/australasian-association-of-cancer-registries.html
CancerMondail (worldwide) http://www-dep.iarc.fr/
Global Initiative for Cancer Registry Development in Low- and Middle-Income Countries http://gicr.iarc.fr/index.php?page=home&lang=1&item_id=1
National Cancer Registry Programme (India) http://www.ncrpindia.org/Cancer_Atlas_India/index.aspx
North American Association of Central Cancer Registries http://www.naaccr.org/

Saturday, August 18, 2012

Coming up September 8th: 6th Annual Attack ACC Family Fun Run/Walk

I saw this in the Chicago Sun-Times Southtown Star:
http://southtownstar.suntimes.com/lifestyles/14463584-423/charity-briefs-for-aug-14.html

Walking for a cure: The Sixth Annual Attack ACC Family Fun Run/Walk, which raises money for research of adenoid cystic carcinoma — a rare form of cancer — is scheduled for 9 a.m. Sept. 8 at the Hickory Creek Junction Forest Preserve, on U.S. 30 about one mile west of Wolf Road near New Lenox. Doctors told the family of Alicia Almanza, of Mokena, a 20-year survivor of ACC, that ACC is so rare that there is minimal research in the works. Alicia’s daughter, Courtney, believes that her mother should have the same shot at a cure as those with other cancers, and helped create the nonprofit Attack ACC. Proceeds will be sent to the University of Virginia Comprehensive Cancer Center, one of few U.S. cancer centers that does research on ACC. For more information, visit www.attackacc.org.

If you get the chance to join this fundraiser, do it! They have the best times there! One of them is the Survivor Meet & Greet, where you will have the chance to meet others facing the challenges after an Adenoid Cystic Carcinoma diagnosis. From the Attack ACC site:

Date: Friday, September 07, 2012  
Time: 6:00 PM - 9:00 PM Attack ACC Meet & Greet

Please RSVP ASAP. We will be serving pizza and refreshments. Survivors and family are welcome to come and join us! We would love to see you come out and join us!

Location:
Parkview Christian Church
11100 Orland Parkway
Orland Park, IL 60467
708 478-7477 / 708 478-5686

Parkview Christian Church is located on the corner of 183rd St and Wolf Rd (Approx. 112th Ave West)
Feel free to contact us for any clarification of directions or any other concerns! 

Saturday, August 11, 2012

I am proud to be one of Dan's 120

Hard to write this, and I don't know if I knew of it before (how did I miss it?!?) - Dan Dube' died May 3 of this year. He was the first of only 2 people I have met in person with adenoid cystic carcinoma, and I truly enjoyed our visit in person and later via email. A wonderful tribute to him is on the ACCRF site: http://www.accrf.org/dan-dube/ . Adenoid Cystic Carcinoma Organization International also has a memorial to him: http://accoi.org/news/index.php?nid=75

Here is the post and a photo of Dan and I in 2008, when we first met. I am honored to be among the folks that he helped, and I sure hope I carry on his legacy. Thanks to all who offer support to those of us wearing this particular cancer. Everything helps.

Sunday, August 05, 2012

What sidetracks you from thinking about your adenoid cystic carcinoma?

As I delve deeper into the planning and the execution of plans for the beginning of the year events at our university of medicine, I notice that I can go days at a time without thinking of ACC or when it might come back - until I get that twinge in my neck or cheek that serves as a reminder of previous battles with the critter. I am very interested in learning how you keep your mind away from dwelling about this 'insidious' cancer - please share in the comments.
 
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