International Rare Disease Day

Adenoid Cystic Carcinoma just might have its day today - February 28th has been set by the European Organisation for Rare Diseases [http://www.eurordis.org ]and a coalition of other health and rare disease organizations to bring attention to rare diseases: http://www.rarediseaseday.org/

On the site under "What is a Rare Disease", I think this description fits what ACC patients face (or at least this patient has faced several of the points):
"Rare disease patients face common problems:
- Lack of access to correct diagnosis
- Delay in diagnosis
- Lack of quality information on the disease
- Lack of scientific knowledge of the disease
- Heavy social consequences for patients
- Lack of appropriate quality healthcare
- Inequities and difficulties in access to treatment and care"

They have a section on the site where you can tell your story through videos or photos:
http://www.rarediseaseday.org/yourstory .

I checked the Eurodis site - didn't find anything on Adenoid Cystic Carcinoma - but it isn't that type of site. They link to other sites that do have information on ACC, such as NORD [http://www.rarediseases.org/]

Wow - I won!

How cool a world this is, that I get to read a great writer's work AND win her blog contest!

http://aftercancernowwhat.blogspot.com/2009/02/contest-winner.html

Be sure to stay tuned to her blog - and not just because there is another contest coming up (which there is) - this blog has great information on it. That is about the highest praise that this librarian can offer!

Please take a look at the After Cancer, Now What blog

I have this blog linked on the right side of mine, but here is the address again:
http://aftercancernowwhat.blogspot.com/ Recent topics include: Big Pharma really just wants to help [I believe this title is on the sarcastic-tone side-th]; Kidney Removal Through Belly Button; Cancer and Nanotechnology; Cancer Survivors More Likely to be Unemployed... all very good reading. The most recent post you really want to pay attention to - she has a giveaway going on, and gives the rules on how to enter. In the interest of complete disclosure: yessss, I am entering by posting to this blog. I have also linked to some of her posts in the past. The author is part of the crew that posts to The Stupid Cancer Blog http://imtooyoungforthis.blogspot.com/

What I really want to know is - how did she get her latest post to show up as Feb 22, 2009? If she has time travel capabilities, I will keep you informed - sending word from next Tuesday through yesterday's post!

The Stupid Cancer Blog.: Pot Smoking, Lazy Ass, Young Invincibles

As a mom of one (nearly two) "young invincible", the term used by insurance companies for 20-somethings that don't have insurance coverage, I found the following post very interesting.

The Stupid Cancer Blog.: Pot Smoking, Lazy Ass, Young Invincibles

Growing up, health insurance wasn't ever talked about. My mom was divorced when I was in the 3rd grade - no coverage, since she didn't take state aid, and my dad only covered his stepkids. I didn't have health coverage until I was married to a US Army sergeant at the age of 23, and that wasn't really insurance ('health insurance', I now know, equals paperwork, and asking "mother may I be healed and whole again", and playing games that you don't know all the rules to and are therefore hard to win). When we lived in Germany in the 80's, I heard much grumblings from my young German friends who complained about the high cost of insurance/health care coverage (not sure how it is categorized over there) taken out of each and every paycheck, since they weren't currently using the service. But man, when something went wrong and they did need health care coverage, there were few worries (well, except for the waiting lists, that is).

Coolibar School Sun Hat contest

If you are associated with a public or private school, school organization (yep, PTA/PTO counts), or non-profit that works with education, consider entering this great contest to win up to 50 sun hats for your class:
http://www.coolibar.com/contest.html?source=emailvol5sales15
That page lists methods of entering the contest, and the contest guidelines of who is eligible to enter.

The contest is to draw attention to the Coolibar School Hat Program, which allows schools to purchase children's hats at 50 percent off of retail price. (Note - home schools are included in this program.) There is a link on the page above to the School Hat Program brochure.

Deadline for entering the contest is May 1, and winners will be announced on May 14. What a great way to have fun with sun protection, and just in time for those end of the year field trips and summer vacation!

Health Information National Trends Survey - HINTS

For any researchers or wanna-be researchers that may be reading this blog - HINTS collects data through telephone surveys on how Americans locate and use cancer-related information. Here is a link to the site: http://hints.cancer.gov/index.jsp
and a link to the Fact Sheet: http://hints.cancer.gov/docs/hints_factsheet-accessible.pdf
Unfortunately, they only list how many look for cancer information 'online' - they don't differentiate between what online resource folks are using for their information. I would have been very happy to report the percentage of people that look for cancer information on blogs, for example...

Locating information about clinical trials

Korean Cuisine mentioned a drug trial in the comment on the last post that seems promising for Adenoid Cystic Carcinoma. Here is a National Cancer Institute site on that drug with links to definitions, patient information, FDA approval information for trials to take place, and clinical trials for the drug Vorinostat (Merck brand name - Zolinza):

http://www.cancer.gov/cancertopics/druginfo/vorinostat

I also searched the drug name AND detroit, since Korean Cuisine said that the trial was taking place there, and located this open trial on ClinicalTrials.gov:

http://clinicaltrials.gov/ct2/show/NCT00499811?term=detroit+AND+Vorinostat&rank=1

Since our cancer does not affect enough people in the same fashion at the same time to run a trial on just us (well, that is what they say, folks), we will have to piggy-back on other trials, and hope that researchers do a systematic review of the literature and locate all references dealing with chemotherapy and Adenoid Cystic Carcinoma. I volunteer to be your librarian, if this is something you want to get frisky with, Madame/Mister Scientist. Let's rock.

New dating site for people living with a terminal illness

I saw this mentioned on BoingBoing: Till-Death-Do-Us-Part.com
The site just started today, Valentine's Day. Link to the press release - http://www.prweb.com/releases/datingservice/terminallyill/prweb1964014.htm
Link to site: http://till-death-do-us-part.com/

I am very blessed to be in a long-term relationship with a man who has known me since I was 15 years old (and this year will celebrate with me a 25th wedding anniversary), and remembers what I looked like in the cancer-free years. If I was back out on the dating field, though, wearing the scars of my cancer fight or recent news that the cancer has come back and won't be going away, I could see myself signing up for this. As anyone who has read this blog knows, I am all for getting things out into the open right away - and this site seems to do just that.

Just learned of another source of sun protection clothing

Lands End is now in the sun protection clothing business. Their line is called Sun.Life, and you will be hearing more about it on this blog in a future personal review of one of their products. They have a special sale going on this Sunday and Monday, though, and I didn't want you to miss out on the chance to check out these clothing items if they are of interest to you. You can link to the entire collection here: http://www.landsend.com/ix/index.html?store=le&action=newSearch&search=sun.life&imageField.x=0&imageField.y=0 . I saw clothing items for the entire family, with a range of UPF 30 to UPF 50. (The search link above is not perfect - their database doesn't just bring back the Sun.Life items. Head for the photos that say "New" and aren't footwear, and you should be able to identify most of the UPF clothing.)

Lands’ End 20 percent off promotion takes place this Sunday and Monday (starts 12:01 am Sunday, Feb 15^th - Ends 11:59 pm Monday, Feb 16^th). For two days only, Lands’ End will offer 20 percent off all merchandise (excluding overstocks, shipping and services). Simply enter the promo code and pin number below at checkout on http://www.LandsEnd.com and you will get 20 percent off your entire order. Promo code is AMERICA/ Pin number is 6289

A great Friday story

I thought you would like to see this news story: http://www.ketv.com/news/18651779/detail.html . It is about a man in Omaha riding his motorcycle who lost $2500 in 100 dollar bills out of his pocket as he rode down the street. Motorists following him saw the bills fly, and stopped to pick them up, BUT NOT TO KEEP THEM. They waited while another driver went ahead to get the motorcycle rider back, and gave him $2400 of the $2500. He was so happy. He didn't even mind the missing 100 dollar bill - saying that the person that kept it probably needed it.
Even though our economy here has not been hit as hard as other areas around the nation, those folks that stopped could have rationalized the need to keep the 'free' money, and use it for their kids, their parents, whatever. Instead, their actions have inspired many more than the money would have benefited, and a man is walking taller because the human race did not fail him in his hour of need.

Crying isn't always a bad thing

Ok, if you happened to be lurking around a craft store parking lot in Omaha yesterday, and noticed a woman in a golden Scion bawling her eyes out, fret no more. It was me, and I wasn't sad - I was extremely happy. It was over 50 degrees outside, bright sun, and I was without head covering, feeling the breeze on my face as I walked back to my car after experiencing some eye-candy in the Hobby Lobby. When I walked up to the car and saw my reflection sans hood, it hit me that I was a totally free woman, headgear-wise. That just hasn't happened all that often since August 2006. I pulled myself together, and drove home grinning. I don't know if I will be repeating it anytime soon, since I was bright red on the radiated side of my face last night at bedtime (the sun really kicks up the burn in my face, all over again.) But man, it was sweet while it lasted.