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Tuesday, May 29, 2012

Ok folks - where is our ACC virtual patient registry?

Time to act is now. I saw this story at NPR:
Patients find each other online to jump-start medical research

Has there been an ACC virtual patient registry and I missed it? Slept through it? Quick - tell me where I can sign up!

Monday, May 28, 2012

Our grieving doctors

Memorial Day primarily recognizes the ultimate sacrifice given by our soldiers - and as a retired military wife, I have seen a slice of what that sacrifice really means, and I honor every one of them and their families on this sacred day.
But when I was growing up, we called this 'decoration day', and went to the graves of our ancestors to pay our respects. I can remember seeing the adults' faces as they would discuss the departed's final days, or share funny stories, and I am sure, contemplated the day when we would be talking the same way over their graves. I learned a lot about how life and death were faced by my elders, and probably picked up most of my strong feelings about my own story's end from those times.
I now work in a medical center, where dying and living pass in the hallway every minute of every day. I am cared for by excellent health science professionals and students, who I hope know that they did a great day's work by removing my cancers and following me as I traveled back to wellness.  I teach graduate health career students on how to locate information and the evidence they need to add to their knowledge as they go about gaining skills to cure and relieve pain and suffering. 

The Assertive Cancer Patient posted a link to a New York Times article on this topic:

I haven't had much exposure in the last 12 years on how these students are prepared for the loss of their patients. I don't want them seeing the loss of my life as a failure, but as a natural progression, since as we all know how life has an ending. I understand that health science students are heading for the best grades and every successful milestone they can record as they work so very hard towards their goal of the specialty they seek. But I would find it more useful at this point in my life to know as a patient what their score was on a course of palliative care,  or  the "good death" seminar,  or their beliefs on the limits of science and my quality of life, than what they scored on a microbiology final (yes, that is important too, but I am trying to make a point here.)  In my opinion, some things, birth and death included, are handled better by the art of medicine than the science of managed medical care. I hope my caregivers are keeping my wishes in mind when they come up with treatment plans, that's all. 

Friday, May 18, 2012

An interesting post

For those of you that know about my connection with the head/neck team at UNMC, here is a recent story by Kalani Simpson, UNMC Public Relations, for your information:


Saturday, May 12, 2012

Adenoid cystic carcinoma in the news

A couple of stories seen recently. 
Bill Ellis of Novato, California, has been chosen to fire the starting gun tomorrow morning for the Tour of California bicycle race, according to this story by Will Jason of the Marin Independent Journal:
He was a long-distance endurance rider at the time of his ACC diagnosis and treatment. The article is a good one - even describes a little about what he goes through daily as a head/neck cancer survivor.
Cheering you on from fly-over land, Mr. Ellis, along with the 35k people that are expected to hear that gun go off tomorrow morning. And I agree with your last quote in the article: "I'd never say never."
I also saw this by Bob Padecky at The Press Democrat about Mr. Ellis - it covers more of his story:
I am going to be watching the televised coverage to see you in your moment of glory, cheering you on like the rest of your fans!
I saw this on the web - not sure if a news story took me to it, but if it did, thanks to the reporter that shared it. The University of Tennessee Graduate School of Medicine is the recipient of a memorial for Kelly L. Krahwinkel. Mrs. Krahwinkel was diagnosed with ACC in 2007, went through treatment but passed away 13 months later. U. of Tennessee has created an endowed chair, and continues to accept memorial donations to support this permanent legacy. A touching introduction to Mr. Krahwinkel by her oral surgeon, Dr. Eric R. Carlson, can be found at the endowment website: . Dr. Carlson goes on to give a bit of insight into why our caregivers begin and continue their hard work, and choose each day to walk the hard road of cancer with us: 
"Providing cancer surgery to patients brings great personal fulfillment to me and my colleagues.  It is an honor that our skills present the opportunity to assist patients in their struggle against their cancer, to educate residents and fellows, and to make clinically relevant observations during therapy that will help future patients. "

As a recipient of much skill and care by the expert health care providers and excellent students at the University of Nebraska Medical Center, I applaud U. of Tennessee in creating and maintaining this memorial. May Kelly's memory live on long into the future, and all the best to the research that benefits from her family's donation.
A wonderful story from KARE (Channel 11) about Gabriele Anderson, track star and graduate of University of Minnesota and heading for Olympic trials in Oregon this June. I have linked to her story before - she was diagnosed with ACC, then thyroid cancer, and has worked very hard to come back after each setback. Keep on keeping on, Ms. Anderson - you truly are a positive model! (And let me know if you ever figure out a way to bottle your energy - I know some mid-lifers that would pay a pretty penny for a teaspoon of it!)

Thieme Publishers has announced that a second edition of "Chest Imaging Case Atlas" has been published for radiologists. Among the cases included in this education reference: Adenoid Cystic Carcinoma. For those of us that will benefit from all of this education, thank you. And as a medical librarian, I am thrilled to see it offered as an e-book through Amazon, Barnes&Noble, and iTunes!

Wednesday, May 02, 2012

Spring travels

If you thought you saw a Cheekymobile last week anywhere near I-70, I-29, I-435, 69 highway, or 50 highway, you might be right. The annual trip took place, this time in the great state of Kansas. I can recommend Overland Park, KS, as a premier vacation destination! My mom and I spent our way across town, seeing great theater and enjoying the best pies in the world at The Pie Bakery (who also has the coolest url in the world: I also visited best friends in the Kincaid, KS area on may way back to Omaha. We are already discussing next year's travel possibilities!
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