Saturday, July 21, 2007

Another person in the news with ACC

Ben Wittner, PGA instructor and trick shot artist, also has adenoid cystic carcinoma, but hasn't let it get him down. "The Art of the Trick Shot" http://www.herald-dispatch.com/apps/pbcs.dll/article?AID=/20070717/SPORTS/707170367/1002

and "Golfing artist wows the Huntington Classic"
http://www.herald-dispatch.com/apps/pbcs.dll/article?AID=/20070716/SPORTS/707160330/1002

Friday, July 20, 2007

Latest travel and taste stories

I just returned from a trip to Missouri where we saw the moms and other relatives, touching base before number one daughter leaves for her year abroad. I think I drove more than 800 miles in just 4 days, and held up pretty well while doing it. While at my mom's, I tried some of her home cooking, but no luck with adding meat to my diet. We visited the bulk food store in Tipton, Missouri, and I loaded up on the regulars: sunflower seeds (no salt), hard red wheat berries (cook it like rice), and fresh cucumbers, green peppers, and cantelope melon. I tried watermelon, but the fiberous netting still gets in the way. I tried some fresh tomato, but still too acidic for eating comfort. I had fun watching the family eat massive BLT sandwiches, though, while we all chowed down on corn on the cob - it is great to have fresh produce to enjoy. I was able to eat out with family 4 times during the trip - twice at a buffet, where I had all the green beans, corn, lima beans, broccoli, cabbage I could want; once at a tea room, where I had vegetable quiche (left the crust) and corn; and once at a family-style diner, where I had one serving of each of their vegetables of the day (corn, green beans, and butter beans). The Missouri Tourism board should be happy to hear that I can spend money on eating out just like the next guy!
If you have had radiation to the head/neck area, and have experienced changes to taste or eating ability, please keep on trying. Don't give up adding food to your diet - just proceed slowly and carefully, and of course follow your doctor's and nutritionist's advice.

Saturday, July 14, 2007

How Adenoid Cystic Carcinoma community sites work in the Internet

The Internet has made it possible for people like me with a rare cancer to reach out to others that share the same situation and connect, which has benefited me and my family immensely. In order to do that, I have to have a computer, Internet access, and time to communicate. No problem for me and most people in the United States - public libraries make Internet access available to their patrons in nearly every community in the country. Another plus about using a blog to create a communication forum is - the software and hosting are free. Otherwise, the costs and labor are all mine, supported by whatever money I earn or am given. I am not a blogger that accepts advertisement, so my readers should know that all the content comes from me, and links to credible sources that I locate.

Now, if I wanted to create a web site and invite all ACC folks in to communicate as a group, I would need to set up an IP address, construct a functional web site that involves monthly hosting fees, and have even more time available to maintain the functionality. I have about 3 choices for funding my efforts: pay the costs involved (and there are many and often) out of my own pocket, get advertising to pay for the costs at the risk of bruising my credibility, or do more paperwork and become a 501(C)3 non-profit organization that still needs to go out and hunt down mission funding of some sort to keep the work going.

I bring this up because I received another anonymous message about The Rare Cancer Alliance yesterday, and how it isn't a non-profit, but run by an individual, who receives any donations made on the site. I mentioned The Rare Cancer Alliance and the Adenoid Cystic Carcinoma Organization International in July 12's post, and this person probably has an alert set up for anything with adenoid cystic carcinoma in the body of a web page (I know I do). Both organizations appear to this librarian to be worthy sites for anyone facing ACC and the questions one has after getting such a devastating diagnosis. Here is more information on who is behind each site, so my readers can make up their own minds about the credibility of the information resources.

The Rare Cancer Alliance is run by one of the strongest women I have met through the Internet -Sharon Lane. She is open about her own cancer and the mission of the site in her About Us: http://www.rare-cancer.org/alliance.html . There is a Make a Donation link, which takes you to Sharon's personal PayPal account - she is the sole monetary supporter of the site, but has a ton of folks helping others in the many rare cancer forums. This site covers many more rare cancers than just ACC. She could have signed up with pharmaceutical companies for advertising - even rare cancers can generate customers - but she works hard to keep the messages on the site clear and to the point. There are many sites run by individuals on the Internet that have donation links - readers don't have to donate, but if they choose to, the means are there to do it. Donations to the Rare Cancer Alliance are not U.S. income tax-deductible, because Ms. Lane is not a non-profit organization, even though she has the makings of one. I do not know why she has not become a non-profit - not my business. The fact that she isn't a non-profit does not muddy the messages given on her site, in my opinion. Because she is open and honest about carrying the hosting costs of the site on her own, I value the existence of the site more, not less. I am very glad I have her resource to turn to as an ACC patient, and will continue to support her efforts as a fellow volunteer. If I should choose to support her monetarily, it will be my business and no one else's. I do not encourage my readers to send any of their money anywhere, since most of us are doing all we can to pay off the doctor bills.

The Adenoid Cystic Carcinoma Organization International's About Us page shows a wider mission that matches its non-profit designation: http://www.accoi.org/AboutUsACC.htm.
In addition to running a free email information group, they also fund ACC research. Their mission is only ACC. Checking their Six Degrees Badge located on their other site http://www.orgsites.com/ca/acco/, the amount is over $10, 000 at this date. Donating money to this organization, I think, is U.S. income tax deductible. I would like to know a little more about where the $10k came from and where it went, as well as who are the board members of the organization, but since this is a 501(c)3 organization, their yearly income/expense figures should be open to me as a U.S. citizen, and all I have to do is ask. They probably have an annual report as well, somewhere. I am a member of the email group, and am very impressed by the leaders on that forum - they are tireless and expert in their handling of such very difficult subjects. I hopefully have helped others as they have helped me as we successfully trek together through the ACC minefields. I am very glad to have this resource to turn to, and will continue to support their efforts as a fellow volunteer. If I should choose to support AACOI monetarily, it will be my business and no one else's. I do not encourage my readers to send any of their money anywhere, since most of us are doing all we can to pay off the doctor bills.

I have no idea why I received the anonymous message about The Rare Cancer Alliance and Sharon Lane. I am amazed to find out that there might be turf wars in Cancerland - like there isn't enough crap to deal with just by having cancer, but as patients we have to hear warnings about our sources of community information support. I am a librarian, and it is my professional duty to evaluate sources of information as to their credibility for patients every day. Both The Rare Cancer Forum and The Adenoid Cystic Carcinoma Organization International appear to this librarian and cancer patient to be credible and worthwhile community information sources for anyone suffering or supporting someone that suffers with ACC. Neither of these sites (nor any on the Internet) should ever dictate anyone's health care, but information gathered should be discussed with one's own health care provider. I would not have linked to either of these sites if I thought they were not credible. If any site's credibility comes into question in the future, I will immediately delete my links to them.

If either of the sites wanted to make their donation list more open, they could create a link to public donations as Wikipedia has under its PayPal and Moneybookers links here: http://wikimediafoundation.org/wiki/Fundraising , but not all donors will want to be public. I know I wouldn't want my donations made public! No one's business but my own (which is why I rarely claim donations, in case the IRS is reading.)

Other individual information resource sites are out there - heck, they have been around since there were bulletin boards back in the late 80's, early 90's. Just because someone self-funds their site does NOT mean the information is less credible - they may be accomplishing the exact opposite by remaining independent of advertising limitations. And if they choose to add a "make a donation" link to said site, site visitors can either do it or ignore it, same as for non-profits - no big deal. Site visitors must always ask themselves - who wrote the information, what is the primary purpose of the website, and how accurate is the information presented.

Here are my recommendations for any site authors reading this. Both individually maintained and non-profit sites should make themselves as transparent as possible on their website, in order to gain credibility with their visitors. State openly where money comes from and where the donations will go. If you have a non-profit board, state their names - be proud of the fact you are a non-profit. If there is an executive director, site visitors should be able to see their name. Visitors should be able to contact any site's authors via phone, snail mail, or email for more information. There should be a date of last update plainly visible on the site.

I know there are other librarians that read this blog occasionally - please comment. If anyone wants to set me straight about any of the sites I list to, email me directly at teresa.hartman (at) gmail.com. I treasure your opinions.

Thursday, July 12, 2007

As ACC patients, we have clout!

If you have been diagnosed with ACC, I sure hope you have joined both the Rare Cancer Alliance Forum (http://www.rare-cancer.org/) and the Adenoid Cystic Carcinoma Organization International (http://www.accoi.org/), so you can get connected with the few of us out in the world. Connecting is where we get our strength to make a difference, as reported today (actually tomorrow, July 13, 2007) in The Wall Street Journal's column, The Informed Patient: The growing clout of online patient groups http://online.wsj.com/article/SB118168968368633094.html?mod=googlenews_wsj

My one hope is that those researching this rare cancer have the sense to connect to these online communities for information. Might be time for the Ninja Librarian to start sending emails to the ACC experts, letting them know about our existence... stay tuned!

Friday, July 06, 2007

Announcing the arrival of taste

I don't want to get too excited, but I seem to be getting taste back. I tried a bit of tomato sauce, and it didn't burn. I tried a bite of an ice cream sandwich, and it wasn't waxy. Since I have a lot of bland things for me in the house, I am going to hit the HyVee for a couple of less-calorie items to try out, just to be sure. The ultimate test - my mom's fried chicken, which I might try the week of July 16 when I visit her. Still not much saliva, so I doubt that I will be lunching on paninis, croissants, or high-sugar items. But if any taste has returned, there will be watermelon on the table very soon!
 
Who links to my website?