Donating to the cause: Adenoid Cystic Carcinoma

At year's end, one's thoughts often turn to how one can give to those doing good in the world, with or without a tax deduction involved. I have listed some sites here that may be useful to you, or to those that ask you about where they should give money to support research on ACC. You can also give to the big cancer organizations, like the American Cancer Society, but they don't fund specific research on a rare cancer like ACC. (If someone from ACS wants to weigh in, please do - email me at teresa.hartman at gmail.com and set me straight). Oh, and I repeat what I said last year - I am listing these organizations and individuals only for information purposes - where I put my money is my own business.

Adenoid Cystic Carcinoma Research Foundation http://www.accrf.org/ - the director of this foundation is one of us, folks. Marnie Abbott Kaufmann was diagnosed with ACC in 2004. She not only went through surgical and radiation treatment, she and her husband formed this foundation to help fund research to someday stop this cancer in its tracks. In addition to accepting donations on their website, they also offer email registration for updates from the foundation.

Adenoid Cystic Carcinoma Organization International http://www.accoi.org/Donate.htm - this site offers great information, an email discussion group of fellow ACC survivors and their caregivers, and has helped fund research on ACC. They have an address for mailing in donations, as well as using PayPal.


Attack ACC http://www.attackacc.org/ created by family and friends of Alicia Almanza, a 16 year survivor of ACC. All the money raised will go to the University of Virginia Comprehensive Cancer Center, the only center that has dedicated itself to research on ACC.

Rare Cancer Alliance http://www.rare-cancer.org/ this is not a non-profit group, but rather is a single ACC survivor that created vital support networks for many of the rarest cancers, including ACC. Donations are used to support website maintenance and research funds, and can be made through PayPal. The site also links to other funding sites for research: http://survivor-support.rare-cancer.org/research-funds.html

Oral Cancer Foundation http://www.oralcancerfoundation.org/donations/ also a site for support discussion lists, this foundation has a General Fund that supports research, awareness, and early detection. They accept PayPal. They also link to the Bruce Paltrow Oral Cancer Fund, a fund co-directed by the OCF and the Paltrow family.

Start your own online foundation. Have you ever wanted to start your own foundation, but figured you needed to win the lottery to do it? According to the Independent Charities of America, you can do it with any amount of money. Before you start one , you should check with your favorite CPA, though, just to make sure you are following the tax rules in the state you live in.


Please let me know if you know of additional non-profit groups that support research on ACC, and I will collect the links here.

Do you wish you could rate the doctors that care for your adenoid cystic carcinoma?

Doctor rating - most people wish for a fair system that consumers can get easy access to, in order to make better treatment choices. The New York Times recently had an op-ed piece, titled: Rating Your Doctor, Fairly http://www.nytimes.com/2007/12/08/opinion/08sat1.html

I took a quick look on the web to see if I could pull up any ratings on any of my doctors. I found a few sites, but as far as I can tell, nearly all required money to see the real ratings. The FAQ of RateMDs shows that it is a social networking site, relying on patients to report on their experiences with physicians, so it is the closest one to being 'free'. I know I use comments and ratings on Amazon when considering buying electrical kitchen appliances, but I am not sure I would put the same weight on someone's comments about the oncologist I need to treat my cancer... I would definitely take the comments into consideration, though. More about this site on a blog, complete with comments from readers on both sides of the rating debate: Notes from Dr. RW

Health Grades http://www.healthgrades.com
offers reviews on physicians, hospitals, and nursing homes. Reports are for a fee - the doctor I looked up had a review available for $29.95. I could also get a cost estimate report for oncology visits for a female, aged 45-64 in my zip code for another $7.95.

Another site, MDNationwide, charges $19.95 for licensure status, their experience with specific procedures/treatments, their ranking in their specialty field, past state & federal disciplinary actions, malpractice judgements, review* of their internship, residency, and fellowship training as well as the medical school they were graduated from and their complete contact information (*folks, all of those can be retrieved for free from a local medical library)... not sure where this site can get all of that info, but I am thinking that there are bad doctors out there that haven't been sued much. Maybe the social networking site WOULD offer more insight into how a doctor behaves at the bedside and in the office.

May you have a Geomag Christmas, too!

Santa brought me cool magnetic toys to add to my collection: Geomag http://www.geomagsa.com
And no, my titanium plate is not magnetic, but I won't tell you how I know that for sure. Merry Christmas, everyone!

Happy Winter

Today is the first day of winter, and the 20th birthday of number one son. I have been thinking about all the things I am currently grateful for:
-my family, close and extended. I love to hear how everyone is doing, and visiting with them using or without the use of technology.
-my friends, without whom I would have been lost oh so long ago
-my home, warm and snug on this cold day.
-my colleagues and my career. Man, what WOULD I have been if not a librarian? The mind boggles...
-the health care professionals I work with and who have worked on me. I prize modern medicine. I have never been one to wish to live in the days of covered wagon. Based on my medical procedures over my lifetime, I wouldn't have survived to my current age if I had lived back then!
-the city, state, and country I live in. I have lived lots of places on both sides of the Atlantic, but this one seems to be the best fit for us. I look forward to working with the community to solve our problems and celebrate our successes together.
-finally, the present I received yesterday - a leather-bound 20 year Advanced Planner. Yep, I plan on wearing out every one of its pages!

Easing off from the thoughts of cancer's return

It has been over a month since my craniectomy, and a few weeks since the great news of a cancer-free biopsy, but I still have to work each day to get relaxed and enjoy the season. It is like I had some military Threatcon exercise, begun with the words "we found a suspicious lesion", and ended with "no cancer found, go home and continue healing". Not all troops in my head have yet heard the news that we went back from Threatcon Delta to Threatcon Alpha. I doubt if I ever get back to Threatcon Normal - that status was eliminated with the initial diagnosis of cancer last year.

From American Cancer Society: Cancer figures for 2007

Cancer Facts & Figures 2007 has been released, and it shows that I was joined in cancerland by an estimated 12,000,000 fellow earthlings this past year. Another estimated 7.6 million around the world died during the year from cancer. The news reports covering this story say that the rate of cancer diagnosis and deaths outlined in the report show a major increase, but you have to be careful every time you read statistics. The ACS includes this caution about the 2007 report:

"Caution: It is very important to note the information below. 1) Beginning with Cancer Facts & Figures 2007, estimated new cancer cases were computed using a new, more accurate method developed by researchers at the National Cancer Institute and the American Cancer Society. Improvements in the new model include use of data from a much larger percentage of the US population, allowance for geographical variation in cancer incidence, adjustment for delays in reporting, and the inclusion of many socio-demographic, medical facility, lifestyle, and cancer screening behavior variables. ...(please read the rest on the website)... The new approach will result in an increase of about 20% in age-adjusted annual incidence rates for all cancers combined and for the most common cancer sites. It will also somewhat affect racial and ethnic differences."

The weird thing is - even with tumor registries and methods available to count just about everything, including just about every hair on a person's head, that number of 12 million is an estimate, not a fixed number. Due to all the variances of reporting systems, this is the best estimate that can be achieved, and is one of many other statistics that will be quoted in many grant applications to support research in the coming months.

Internet Broadcast video of surgery to remove Adenoid Cystic Carcinoma from hard palate

The National Library of Medicine has a live video of surgery to remove ACC from the hard palate and palate reconstruction at this site:
http://www.or-live.com/distributors/NLM/rnh.cfm?id=261 .
It requires downloading Real Player. There is a transcript, if you don't want to view the video.

There is also one that mentions craniectomy that I might watch (they didn't film my procedure in November, dang it!): Procedure to treat Chiari Malformation http://www.or-live.com/distributors/NLM/rnh.cfm?id=161 .

Adenoid Cystic Carcinoma in the news

From the Los Angeles Loyolan: English Professor dies of rare cancer at 49 - Dr. Scott Odom died of rare form of cancer last Friday.
http://media.www.laloyolan.com/media/storage/paper803/news/2007/12/03/
News/English.Professor.Dies.Of.Cancer.At.49-3127825.shtml

Healing is not without pain

I think I have discovered why some folks get hooked on pain meds after an orthopedic surgery (is the skull bone considered orthopedic?). Saturday night was a killer - lots of pain, and it freaked me out more than I would like to admit, since I knew extra pain might mean rejection of the plate or infection of the surgical site. After all, I had had little pain up to that point, and figured I was home-free. The pain lessened overnight, so I went about my business Sunday. Since then, I have had increased levels of pain, but have managed things with ibuprofen only (about 5x a day). So, I stopped by the surgeon's office on the way home from work today, just to see if they could more clearly define the term 'more pain' as a warning sign of trouble. Due to the ice storm that hit Omaha last night, they had a slot to slip me in (not my original intent, at all, I just wanted some information, but they were great to give me an appointment at short notice), and I got to see the whole team: the expert PA, the surgeon, and the nurse manager. I was reassured by all that there are no evident signs of infection or rejection, and the healing seemed to be taking a regular course. All that is happening is that the nerves are starting to wake up and/or knit back together, and are complaining loudly about the rough handling they had back on November 15. In the doctor's words: "The good news is that you are getting sensation back in that area. The bad news is - you are getting sensation back in that area." The doctor didn't see any need for a different pain medication at this time, saying that ibuprofen is the way to go, and my 2 grams per day is still below the daily limit for that drug. I am very relieved for his judgment and the reassurance given to me by the PA, as I wasn't looking for any further pain meds at this time. I have a practically new bottle of oxycodone that I have ignored since the Monday after surgery (hate what narcotics do to my innards, plus the drug didn't seem to cut the pain as well as ibuprofen, even in the days just following the surgery). But I can sure see how someone else might say - gee, I could go back to this stuff now - and then just get used to it, hooking themselves long-term on the pain medicine. Healing itself is a painful process (as is life, but that is for the future philosophy blog I might write). I have always known that about healing (many surgeries and boo-boos in my background). This time seems different, since it is my brain-pan we are talking about, and I really want to take the best care of that area as I can!
Now, does anyone know how to correctly dispose of pills that are no longer useful? Just let me know, and I will spread the word here.
Update: Suggested by a librarian and fellow blogger - Mix Leftover Meds With Kitty Litter http://www.msnbc.msn.com/id/21641396
And these posts by the Assertive Patient blogger - Dumping Leftover Drugs http://www.assertivepatient.com/2007/12/dumping-leftove.html
and, How About Recycling Leftover Drugs? http://www.assertivepatient.com/2007/12/how-about-recyc.html
Someone at the university med center had suggested that I find students that are going for their missions overseas, and offer the drugs to them. Wrong, wrong, wrong. They can't take them, nor can the faculty member in charge of the program take them, so dispose of the things before your kids and your kids' friends start selling them for lunch money, or taking the drugs themselves: Painkiller Abues Persists Amid Drop In Teen Drug Use http://www.freep.com/apps/pbcs.dll/article?AID=/20071212/NEWS07/712120340/1009

Healing well, though sad time in Omaha

While the world is going crazy outside my door, I have been healing up just fine and getting ready to head back to work next week. My heart goes out to the families that had such terrific loss yesterday, and to our city as it works together to heal in a different way.