Links on the sidebar for those that can't see the sidebar

Here are the links I have to additional information sources and blogs of interest:

• Nebraska's Free Consumer Health Information Resource Service [CHIRS]
• Locate a consumer health library anywhere in the US, Canada, and other countries
• My Cancer by Leroy Sievers at NPR
• Cancer section at MedlinePlus
• Adenoid Cystic Carcinoma Organization International
• Support for People with Oral and Head and Neck Cancer [SPOHNC]
• Rare Cancer Alliance
• Oral Cancer Foundation
• The Assertive Cancer Patient
• Life Changing Cancer
• Sharingourdays-community for those with ongoing health conditions

My first try at adding video to the blog

Well, messing around with Google Video (beta) might not have netted me the skills I had hoped for tonight, but here goes. I took a 20 second movie of the Sikh parade in Philadelphia, and wanted to share the music and rhythm that we felt while watching the parade go by. See if this link gets you to the correct movie: http://video.google.com/videoplay?docid=8778435660974494009

Adenoid Cystic Carcinoma in the news

Every month, I hit Google News and search for adenoid cystic carcinoma to see if anyone is writing about it. Here are the stories I found today:

in the Wall Street Journal: Coaxing Cancer Researchers to Take Your Money (about the Kaufman Foundation): http://online.wsj.com/article/SB117980101035910381.html?mod=googlenews_wsj

in Kingston This Week (Ontario, CA): Broadcaster to join legions of survivors at Relay
http://www.kingstonthisweek.com/webapp/sitepages/content.asp?contentid=543587&catname=Local%20News&classif=News%20-%20Local
catname=Local%20News&classif=News%20-%20Local


in Charleston Daily Mail (West Virginia): Woman claims malpractice left her without an eye and part of her nose http://www.dailymail.com/story/News/2007052317/Woman-claims-malpractice-left-her-without-an-eye-and-part-of-her-nose/
her-without-an-eye-and-part-of-her-nose/

KMBC-TV (Kansas City, MO) - Cancer Patient Upset with Coventry Insurance http://www.thekansascitychannel.com/health/13298245/detail.html

July 9, 2007: Update on the Kansas City story http://www.kansascity.com/news/columnists/mike_hendricks/story/176742.html

July 18, 2007: Update on the Kansas City story
http://www.abcnews.go.com/GMA/OnCall/story?id=3389038&page=1

July 19, 2007: Update on the Kansas City story http://www.kansascity.com/115/story/197552.html

August 6, 2007: Update on the Kansas City story
http://www.thekansascitychannel.com/news/13834962/detail.html

More traveling, now for resting

I had a wonderful time at the Medical Library Association meeting in Philadelphia, but I think the bags under my eyes have bags, so no more traveling for a while. Nice to have a good, long weekend to go through the memories of events that just took place, and process just how far I have come in the 8 months since my last radiation treatment.
I had few issues come up during the latest trip that were due to aftereffects of cancer treatment. My experience flying was even easier than the October 2006 trip, with the exception of the early hours I had to be at the airport both leaving and coming home (my own fault - I went for the cheapest flight, not realizing I would be at the airport before the desk personnel and TSA.) Food was not an issue - in Philadelphia, the Marriott that I stayed at was next door to the wonderful Reading Terminal Market, a haven for someone like me looking for fresh cucumbers, colored sweet peppers, and hummas. The hotel gift shop had milk (that for some reason was not the same price each time I bought it during the 4 days), and there was a 7-11 right across the street for more milk if the gift shop ran out. I went out to eat 3 nights, and found acceptable fish dishes each time (passed on the $46 lobster - figured it would be a waste, since I couldn't taste it properly). I looked up an old friend I hadn't seen in person since 1983, and we had a great time catching up on our lives, how our dreams have held up, and finding out that we were pretty much the same people as way back then (like finding tiny time capsules of ourselves). I walked all over town with my hat on (and regretted it the next day when I didn't wear it because of clouds - yes, UV still hits you on cloudy days), exploring in all types of weather. Even walked up the steps of the Art Museum (a la Rocky Balboa) with no trouble - walked, not ran! I was able to see many of those that supported me during my treatment and recovery, and thank them (still have many names to go - Omaha has run out of tiger eye stars!). And on the day of my 8 month anniversary of the last radiation treatment, I was on a speaker's podium with a great friend, reporting on research that we did regarding expert patients and their blogs. I could not have imagined such a feat taking place when I was sent home to heal my radiation burns back in September.
The only bad thing that happened was when I went with friends to a vendor party, and the band was way too loud - we're talking kidney-stone-shattering loud. (For some reason, loud noises just tear through my ears these days.) My friends knew I was in trouble, and shoved me in the ladies room while they scouted out a good exit away from the music. They fished me back out of the ladies, hauled me down a staircase, and after about two flights of stairs, I could drop my hands from my ears and relax. (Friends are great!) Guess rock concerts and jobs with jackhammers are out for me now.
I have several photos of me with friends, so I know the Philly trip wasn't a dream, but it sure was the answer to my prayers.

I am back to traveling, and doing fine

Last week, a colleague and I visited public libraries around the state, and taught 4 classes on our new health facilities and services information database, Go Local Nebraska http://medlineplus.gov/nebraska . I am proud to say that, after 1474 miles, two rental cars, and 5 motel rooms (one of which overlooked the state pen - I shouldn't be the one to arrange motels during the next trip!), I am traveling just fine, and probably doing better than I did this time last year, when my head hurt so bad all the time from the tumor. My colleague, who was already a big hero to me when she refused to let me poo-poo the pain and lump and promised during our road trip last year that she would nag me continuously until I visited a doctor, was an even bigger hero for riding around with me driving in my new Coolibar hat http://www.coolibar.com/02512.html. The hat worked so well - my face hasn't been hurting as much at night, so I know I must have been exposing it to the sun before, even with the face shield.
I didn't scare too many people, but one library staff member did widen her eyes quite a bit when she saw me waiting on the doorstep. When our first rental car became undriveable in Wallace, Nebraska, we stopped by the local co-op and one of the mechanics on duty said, "oh, do you have lupus?" when he saw the hat. I told him it was something like that, and was grateful that he understood there could be reasons for covering one's face other than being sinister.
The whole eating thing took care of itself pretty well, too. I brought my protein shake mix, just in case, and could mix it with water in the motel room if I hadn't had much to eat during the day. The diners and restaurants that we stopped in usually had green beans, or other vegetable handy, milk, and quite a few of them had fried shrimp (hey, it works for me). The very best meal was in Stanton, Nebraska, at the Uptown Brewery http://stanton.net/brew.htm. The librarians in town recommended the place for lunch, so we drove over and were very pleased with the ambiance and the excellent menu & service. They didn't have vegetables listed on the menu, but the waitress said she would ask the chef. She came back with the best plate of steamed veggies I have enjoyed ever - even had asparagus in it - and it had a small dish of sauce. My colleague tasted the sauce, pronounced it wonderful and free of pepper or garlic, so I tried some on the veggies. It worked - not sure what it was supposed to taste like, but it worked very well. I felt special to have a plate like that fixed just for me.
I leave at o-dark-thirty in the morning on Friday for Philadelphia. Thanks to last week, I am not worried a bit about how I will manage - I know I will do just fine!

What a mother's day!

Watch out what you wish for, because it just may come true! Our number one daughter (we have a number one son, too) has just been selected to participate in a long term Rotary Youth Exchange. She will be traveling to Austria in August - not sure where just yet, they are still seeking out a host family. I had hoped and prayed during my cancer treatment and recovery that I would still be around to see my children become independent adults - and her opportunity is coming just a little faster than we ever expected. My husband and I went with her to be interviewed yesterday afternoon, and after they interviewed the three of us (separately - her by herself, then the two of us together) they gave her the good news that she was accepted, and that all paperwork needs to be in by Friday. We have some jumping to do to get everything in order, but are so very happy to have this duty. She is thrilled to be living and learning in Europe, something she has hoped for for most of her young life. Some of her duties during her time in Austria and again when she returns include speaking about her experiences at Rotary club meetings, and encouraging families to sign up to be host families on both sides of the pond. She will need to complete her Senior year after she returns, putting her a year behind her friends, but in her words, worth it for the adventure she will have. Finances for this adventure will have to be pretty creative, since most of our 'expendable' income has been going for doctor and hospital fees, but we are confident that the money will come when it is needed. For now, we are enjoying her excitement - it is so refreshing to have large doses of that in the house!

Cancer and what it does to money

The topic of money and cancer has come up in several electronic conversations I have had recently. I received a link to a story about a woman near Kansas City who has the same type of cancer as I do. Her cancer has returned, appearing in her lungs, and the treatment her doctor prescribed has been denied by her insurance company. You can read about her story here: http://www.thekansascitychannel.com/news/13298245/detail.html. There are a couple of clinical trials with that drug going on right now, but no drug has been shown to be effective against adenoid cystic carcinoma, which is why the company is not paying for the treatment. Since it is a rare cancer, no telling how soon any drug will be tested enough to be shown that it is effective.
I received another message concerning money and cancer from Jeanne Sather, author of The Assertive Cancer Patient. In her recent blog post http://www.assertivepatient.com/2007/05/boycott_amgen_a.html, she calls for a boycott against Amgen and Johnson & Johnson, because they have paid doctors to prescribe their drugs. She links to the story about the 'incentives' in the New York Times.

I did a quick search, and found out through a Newsday article that a report in the New England Journal of Medicine says 25 percent of doctors have received direct payments from pharmaceutical companies ( http://www.newsday.com/news/opinion/
ny-vpduo065201092may06,0,4956539.story?coll=ny-editorials-headlines)

Other related links:

A 2002 article in BMJ "Ethics of undisclosed payments to doctors recruiting patients in clinical trials" http://www.bmj.com/cgi/content/full/325/7354/36.

"Pharmaceutical Company Payments to Physicians", JAMA. 2007;297: 1216-1223 (March 21, 2007). This article links to the 2006 Prescription Drug State Legislation http://www.ncsl.org/programs/health/drugbill06.htm, and the 2007 Prescription Drug State Legislation http://www.ncsl.org/programs/health/drugbill07.htm.

A blog commentary on the JAMA article: http://hcrenewal.blogspot.com/2007/03/more-on-financial-entangles-of.html

But Vermont and Minnesota appear to be lax in allowing public to access records of pharmaceutical gifts to doctors: http://www.medicalnewstoday.com/healthnews.php?newsid=65758

There is a No Free Lunch organization, which believes that pharmaceutical promotion should not guide clinical practice http://nofreelunch.org/.

The American Medical Student Association has a PharmFree push each year http://www.amsa.org/prof/pharmfree.cfm.

The lawyers are paying attention: http://www.atlantainjurylawblog.com/medical-malpractice-pharmaceutical-industry-payments-to-doctors-linked-to-increased-prescriptions-of-meds.html

And a blog that updates and adds commentary to the book: HOOKED: ETHICS, THE MEDICAL PROFESSION, AND THE PHARMACEUTICAL INDUSTRY, by Howard Brody, MD, PhD (Rowman and Littlefield, January, 2007) http://brodyhooked.blogspot.com/