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Wednesday, July 29, 2009

Pitting Cancer Support Organizations Against Each Other-Really?

I received an email yesterday from the communications manager of the Oral Cancer Foundation, asking for me to review the OCF on a website, so they would have a better chance to win the Cancer Fighters Award. Deadline is Friday for the reviews. Each review is counted as a vote on the site, and the organizations with the most positive reviews win the title of Cancer Fighter. I won't include the email message here - it has one of those disclaimers at the bottom that says the message is only intende for me, blah, blah. But I will name the site that is causing our great support organization to yank its members' tails and demand their participation: GreatNonprofits . I checked out the site, and saw that they have already pitted the Religious LGBTQ groups against each other for the Pride Choice Awards. Another contest for the Green Choice Awards resulted in their first list of Best Environmental Nonprofits. Okaaaay. To my librarian side, the lists are just one hair above meaningless - results of those that took the bait and wrote a message on a website, with no way for the reader to know if the reviewer truly exists, or what the 'positive review' really means in the scheme of things, or how the review should lead the reader to be more likely to donate money to the non-profit. Our library could run one of these schemes: we could ask all of our health professionals (nurses, physician assistants, radiology techs, cardiologists, endocrinologists, family physicians, neurosurgeons, oncologists, healthcare administrators, billing specialists, security officers, environmental services, maintenance, other librarians - you get the picture, and the list is way too big and varied for this rant, and probably equals in percentages the number of cancer support groups for the MANY types of cancer) for their vote/opinion on what is the best information resource that helps them get their job done. The number of users is finite, and is not equal across the different professional groups - just like the number of cancer survivors/caregivers that participate in each of the cancer support groups. In our library, I would imagine that the resources for students would get the highest number of votes - we have many more students than professionals, just like most educational institutions. And security would be one of the smallest groups represented, even if 100% of the department voted. Depending on how well the chains are rattled in various cancer groups for the GreatNonprofits contest, I can bet that some of the top "Cancer Fighters" will include lung, colon, prostate, and breast cancer , with oral cancer not even making the top 10 - except that we in the oral cancer section of the world do tend to be more likely to toss our opinion around at times, and might vote more.
Ahem - back to my post.
I am not a marketing professional, but I play one at work, where I have been assigned to get the word out about our library and services, just as the communications officers get the word out about the cancer support groups, and websites get the word out about their content - all in order to get more visitors/customers. I have a problem when a website's content only exists due to coercion or contests or for money - it should be freely given, unbiased, without implying that if the person's nonprofit is not chosen with the most positive reviews, it is assumed to be lacking that special something. People needing consumer health information and cancer support shouldn't have to worry about their main sources of information support winning beauty pageants - they need to know the information on the forums is from actual people who actually experienced similar treatments and outcomes. (Note - sometimes, one needs to assume from the start that this is not the case until proven otherwise - after all, On the Internet, Nobody Knows You're a Dog). I am not totally knocking the GreatNonprofits website for their use of social media for their awareness campaign. I am knocking them for leading their viewers to believe that the reviews they find have more value to the viewers' useage and donation choices than the reviews really do. On their About Us page, they compare their reviews to restaurant review sites and the reviews found on Amazon. I understand when I read restaurant reviews that they could have been written by a competitor, or a brother-in-law (hopefully being negative and positive in nature, respectively) or a cranky customer that keeps coming in so they can write another bad review. As for the reviews on Amazon, well - in the past, some have been discovered to have been paid for (and how many weren't discovered?).
Bottom line: be an Internet skeptic with reviews as well as other activities you do on the 'Net. Research the support and information resources available to you, hopefully with the assistance of a librarian. Evaluate the support and information you receive from the website and the forums. It is so hard to do when a person is desperate for any information in the crisis situation of being newly diagnosed or a loved one diagnosed with mets, but a part of you must remain skeptical of the information you locate until you can check it over with your health care professional. The Oral Cancer Foundation had information on it that saved me during treatment three years ago, and still is a high quality site. Their site has excellent content, managed forums, and are worthy of donations on their own merit. They do not need to participate at all in the GreatNonprofits hoopla to get noticed, in my opinion.
If you are looking to donate your hard-earned dollars, let your local librarian know if you really want to scope out a good nonprofit - we can help you get to the source of unbiased ratings/reviews.

Tuesday, July 28, 2009

video On Being An Oncologist

As cancer bloggers, we talk about our oncologists in various ways - positive, negative, as a team member in our care, as a barrier to the care we think we should be receiving - but rarely have our oncologists as participating discussion members. I found this great video that presents the oncologist's point of view through actors William Hurt and Megan Cole on the MD Anderson site. Designed for discussion and reflection by health professionals, the video grew out of a focus group project that gathered comments from the professionals at MD Anderson. In these days of health reform discussion, remembering that our caregivers are humans with lives and talents and skills and fatigue and fears and concerns and barriers of their own might be pretty useful to keep in mind. Thanks to all of my health professional caregivers - I salute you for your work you do despite your frustrations and barriers of the system/time available/limitations posed by the disease process I face.

Monday, July 27, 2009

My voice update

I am teaching with the Chattervox now, and loving every minute of it, since I don't have to force the voice for 2 hours straight to go over the fan sound of 14 computers. I joke with the students that they can expect me to interrupt my lecture with, "But wait, there's more!" occasionally. I just have to remember not to go evangelical on them when I see eyes glazing over (the classes this month are after lunch - oh, man) - the Chattervox amplifies my voice very well, so if I get strident, they lose their hearing (grin!).
A friend and reader of this blog suggested that I could use this in a pinch. I think I may wear that to the next head & neck surgeon visit, just to keep them on their toes. Either that, or Darth Vader's helmet.
Still can't sing or hum, which is frustrating in the Cheekymobile and in the shower, but probably better for harmony in the home (family says I couldn't sing before...). Not sure if I ever will be able to make music outside of whistling - guess that is why the Marx brother did that.

Hope everyone gets to attend a family reunion this summer

Just returned from Minnesota, where we attended my dear husband's family reunion up in Plymouth. Really nice time - got to see many of the branches of the family tree, and see where we all fit together in the scheme of things. The most fun was getting folks to hold still for the family shots! The kids that attended seemed to have a good time with the playing and the attention from doting grandparents. The food was wonderful - great cooks in his family. And he and I had a great time on the drive up and back - it is so nice to have a best friend on a trip like that. We had so much fun, we are planning another trip up to the Ikea store to buy bathroom fixtures that we liked. We used to shop at the store near us in Germany 20 years ago. I keep emailing the company that they need to build a store down here, but they just reply politely that Minnesota is as close as they are getting to Nebraska. Ah well - the visit with family will make it all worth it.

Tuesday, July 21, 2009

New Adenoid Cystic Carcinoma blog

I found this while searching for something else yesterday (the story of my life as a librarian, actually). Sherry Rogers was recently diagnosed with Adenoid Cystic Carcinoma in her eye orbit, and has created a Caring Bridge journal: .
Please be thinking about Sherry and her family - one of her young sons was very recently diagnosed with a kidney tumor, and she as a cancer patient is now caring for her child, another cancer patient. But based on the supportive messages of love and prayers attached to her journal, they are in great hands.

Parotid tumor in the news

Adam Yauch, member of the Beastie Boys, announced that he has been diagnosed with a tumor in his parotid: .
He is anticipating surgery and radiation treatment. I wish him the best as he heads toward healing.

Friday, July 17, 2009

Cure for Radiation Sickness Found?

That is the title of a news article on News Forum:

Found it first on BoingBoing... Can't find anything else about it, but if it is true, THIS IS AMAZING!! I will be watching the Cleveland BioLabs site ( and Google News to see if there is any update/verification.

Tuesday, July 14, 2009

Blogger's post about health insurance

Saw this on "After Cancer, Now What":
How I lost my Health Insurance At the Hairstylist's

Gives some great talking points about health insurance and how tenuous it is. There are no perfect programs - in the UK, I hear of ACC patients waiting way past the 6 week window for radiation treatment (at that point, what's the point?), and trouble if an expensive drug is needed (generally, not going to happen). Canada has trouble with its primary care system - hard to get a primary care doc if you aren't sick enough - and if something is needed right away, say cardiac treatment or a NICU for a baby, you may have to travel across the border for care in Montana or another northern state. In Germany, I watched an employee struggle with his dad's diabetes care, ultimately ending in a leg amputation due to the long que for preventive care, and then no nursing care beds, so he had to keep dad on his couch in his house for months. Here, I know I am not insurable except maybe by a place that has a large group policy. I am luckier than most - my care did not require chemo, and probably won't if the cancer comes back. Radiation costs were about $90k before the insurance negotiated it down - not as bad as a transplant, say, or some chemo treatments that hit 6 and 7 figures really fast. I am not sure what they are discussing here for our options, but dang it, we need to have some. At the same time, I believe that health insurance should be mandatory - yep, all you 21 year old immortals, you should be in the system. (That was the biggest gripe in Germany I heard - the younger workers didn't like having to be paying into the system when they didn't see any payback-yet.) I know of a mid-twenties person who just had a really bad accident - could have used health insurance. I know of a 21 year old with asthma - has chosen not to get health insurance. Go figure. Get responsible, USA and all citizens - take care of your self and your family, and talk to your congresspeople. Yeah, whatever they come up with is going to be different than now, but if you have 'great insurance' and don't want anyone to mess with it, just reread the post above - it may not be so great if you actually have to use it once.

Sunday, July 12, 2009

Update on reduced-volume Cheeky

I am not silent anymore, but still don't have the voice I used to (or a lot of other things, if we want to get right down to it! Ahem.) Our IT librarian came by on Friday with a great contraption that one of his teaching relatives uses - a headset/amplifier set. Chattervox is the brand name of the model he is buying for me. I have seen tour guides and carnies/booth babes use these, I just never thought I would be wearing one. So I guess I will be giving Vince a run for his money as I 'sell' the positive points of and access to information as a 'good thing' to health professionals and students.

Another cancer blog with good information

I just had a comment from the author of this great list of cancer blog links, saying he was adding the Cheeky Librarian to his list:

from his About page:
"Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle."

Hmmmm... a medical librarian and a cancer nurse. I just bet that we could get up to something if we put our heads together! Thanks for the link, Dennis. I have added you to my blog roll, too.

Mommy bloggers are big - where are cancer bloggers?

I saw this BizReport from May, after hitting a search brought up by this morning's GMA story on Mommy Bloggers making money:
Nielsen: Mommy Bloggers - the ones to watch:

Please listen up, Nielsen. Of the cancer blogs I follow, I would vote that Jeanne Sather's The Assertive Cancer Patient , and Kate Burton's After Cancer, Now What? , are two blogs that I read the most. I am so glad that I can follow other folks' stories through their blogs - Dee's Updates, Korean Cuisine, Cyndi's A Day in a Life With Life, Molly's Musings/Brawley's Boobs-WHATEVER!, and the others in the list I have on the right side of this page. Yes, I still link to folks that have died, since their recording of their cancer travels can be of help to others on our shared road. Not much advertising on most of these blogs. Some bloggers have gone with topical advertising, or like Jeanne, have created another site that they conduct business through: Charmed Bracelets, as well as accept donations to support the blogger. I don't know how acceptable sponsored blogs are in Mommy-land, but as a cancer patient and a medical librarian, I take any sponsorship on a health-related blog with a grain of salt. I have had one episode on this blog where I received something to review, with the understanding that the review would be my own to write - no other support or sponsorship has been received for the other things I recommend for cancer treatment coping - Optimum Nutrition Gold Standard Whey as a protein drink, Coolibar as a source of sun protection clothing, Biotene as a toothpaste for low-saliva, your local public or medical library for good sources of information... My blog is just to let folks know what worked/works/didn't work for me, so they will have some additional items in their decision tool-box.

So Nielsen, you might want to run a survey of influential cancer bloggers. Please just remember to go for the rare cancers as well as those that impact larger portions of the population - thanks. As far as influence, I wager that those of us in the rare cancer world may have greater impact in each life we touch - there just isn't a lot of information out there on some topics!

Tuesday, July 07, 2009

Cheeky voice update

I had the first lecture since June 3rd to do today - I think I did ok, but it wasn't my best effort. Voice is still gravelly, and I have to force it to get the sound out. People I work with (and live with!) still feel free to tell me to stop talking. (Miss Manners, I think I have found a method for folks to be able to tell another to shut up in polite society-just tie it to a medical condition.) Still wish there was a crutch for a voice in trouble. I signed up to do 5 2-hour lectures between now and the end of the month, so things had better get better FAST.
You know, I have learned to live with the various pains that have come up (chest area, abdomen, head of course) - no sweat, and I know others face much more, pain-wise, and function well. But what is the best way to cope with losing voice? Let me know if you think of anything. Since communication is key to my job (despite what you may think of librarians and professors, we do talk - a lot!), this new limitation in my life is something that keeps me up at night a bit.

Monday, July 06, 2009

This could be the best obituary ever

Nancy Lee Hixson, of Danville, OH - April 17, 1944 - June 30, 2009

I hope it isn't wrong to say this - I really enjoyed reading this obituary, but really sad that I didn't get to meet Ms. Hixson in person. A friend sent this link to me from Twitter, so her sphere of influence continues to spread. Here's to you and the wonderful life you led, Ms. Hixson.

Wednesday, July 01, 2009

Peter Tork talks about his ACC, in his own words

On the Washington Post site:
Peter Tork's Cancer, In His Own Words
I for one wish him a great recovery, and many years ahead of making beautiful music!

More on letting your loved ones know your passwords after you die

I saw this post on BoingBoing: How to incorporate escrow of your keys and passwords into your estate plan -
I know I am much more concerned that my loved ones know where to find any money coming to them, and how I wish my belongings to be distributed (I will let you just start wondering about who gets what!), but allowing them entry into my digital life is also important to me. Please leave a comment if you have figured out how you are doing it - I am really interested in what process to take. And if you are an estate lawyer out there that is even slightly "techie", here is a new service you can start offering. If they can deliver a letter decades later at a specific moment in a thunderstorm (ok, it was in 'Back to the Future Part 3', but still), someone should be able to set up a process to simultaneously update and guard passwords and still hand them out at the time they are needed.
Who links to my website?