Thursday, October 31, 2013

Update on fellow ACC wearer Shane Leonard

I wrote about Mr. Leonard's story back in 2012 http://cheekylibrarian.blogspot.com/2012/04/adenoid-cystic-carcinoma-in-news.html . His story recently hit the Attack ACC facebook page, so I went out to see if any other information on his progress was out there.
Up for the task
Up for the task
I located his LinkedIn page, which took me to his Twitter feed https://twitter.com/shane_w_leonard . Way to go, Shane - he is at Stanford! Here is another story about his mentorship with an MD Anderson physicist and how that led to his studying at Stanford: http://www.mdanderson.org/newsroom/cancer-newsline/cancer-newsline-topics/2012/mentoring-cnl.html . Keep on keeping on, Shane. A whole new bunch of people are out here, cheering you on, thanks to your story hitting the Attack ACC Facebook page this week: https://www.facebook.com/adenoid.cystic .

Saturday, October 26, 2013

Adenoid Cystic Carcinoma in the news

Winter's nearly here
Winter's nearly here
I saw a tweet from Mark Bellinger of the News Channel 5 in Nashville, TN, that appears to say he is dealing with ACC like many of us: https://twitter.com/NC5_MBellinger/status/393459347117731840 . Sending you good wishes, Mr. Bellinger. Let us know if you need information on this - you are not alone in your fight!

Some of the folks fighting keep up with each other on this Facebook site, managed by Attack ACC (a link to that organization is on the right side of this blog): https://www.facebook.com/adenoid.cystic . I hope you can get to the page and take a look at it without having a Facebook account - not sure on that, though. Let me know if you have trouble seeing it.

I also saw the coolest story about a fellow ACC wearer that I have written about before (http://cheekylibrarian.blogspot.com/search?q=babao), who is one of five winners of the Dove Men+Care contest - Gerald Babao,  who will be running in the New York City Marathon, AND has his own 5k coming up that raises money for the ACCRF! Here is the story about Mr. Babao and a fellow contest winner, Jonathan Vogel: A bond tht will keep on running (by Reid Creager) http://www.charlotteobserver.com/2013/10/25/4411575/a-bond-that-will-keep-on-running.html#.UmxTZZRMRro . You can register for the upcoming Wannabe Cancer-Free 5k at this site: http://www.wannabecancerfree.org. Congratulations on winning in so many ways, Mr. Babao!! And thanks for raising money to research this stuff that we wear daily.

Sunday, October 20, 2013

Grey Matters conference thoughts

Fall day
Fall day
Yesterday was a special day, but I am not sure I can fully explain how special it was and still is to me.

I was invited to speak about locating quality health information on the Internet at a conference for brain tumor patients and their caregivers.  The last session of the conference was open questions to a panel made up of all speakers, including me. I sat next to my very own radiation oncologist (the one that worked so hard with me in 2006 for 6 weeks to eliminate any growing tendencies in my residual ACC cells!) and other experts on surgery, neurology, social work, and psychology. No one asked me any questions--that was ok. I knew I was witnessing something very special as I heard the questions and answers start flying. It was an honor to see the care flow in tangible ways, especially after the last couple of weeks when health care discussions have stalled our entire Nation. The care that the health professionals included in their answers to some very, very hard questions was wonderful to see, as was the relaxation, relief, and determination in the faces of the patients and caregivers when they heard the answers.

I meet with health professionals daily at work as a fellow faculty member and part of the larger organization that is our medical center. I get to visit a handful of them as a patient, when I have a different relationship with them, very personal and vital to my life. What I witnessed yesterday was something even greater. I watched as other patients and caregivers, walking paths similar or much more difficult than my own, interacted with dedicated health professionals, together working towards solving chronic or returning conditions with the goal of improving or maintaining the ever precious quality of life. Health is personal and requires a lot of care. I am so proud to work at a place that hires professionals that know that and practice it as a way of life. And I am even more awed at the strength of my fellow humans who are living gloriously, casting shadows daily.

Sunday, October 13, 2013

Sometimes having a slow cancer is like living in a Dish Network commercial

My family members and friends have my best interest in mind, but sometimes the information they forward to me is a bit scary, and I end up feeling like the middle guy in the 2013 Dish Network commercial, where he wants to hide under the bed to stay safe.

Just when I think I have a handle on how many different things can happen with Adenoid Cystic Carcinoma, fresh news knocks me out of my librarian objectivity and I end up silently yelling in my head just like the Dish Network guy yells out loud. I felt that way when I had been having a sore leg recently and coincidentally received a message that included this latest case study on ACC of the leg http://www.ncbi.nlm.nih.gov/pubmed/?term=24072374. If I had been truly concerned, I would have contacted my wonderful family physician (because she takes care of my whole being) or friendly neighborhood head/neck surgeon (because he is familiar with my cancer path, though not necessarily the anatomical body part in the research article), and asked if I needed to be evaluated. Then I would have used my library's consumer health information service to request information on any diagnoses that I might receive (since I am too close to the situation to look up my own information - I really need an unbiased, objective eye to judge what information would apply to my conditions). If you find the need to locate consumer health information services near you, please use the links on the right side of this blog to help you out, or contact me and I will get you in touch with expert librarians in your area.

Don't hide under the bed. You need to know. Please use a medical or public library and ask a librarian to help you search for information on all topics of health. They can help you locate information to take to your health care provider team for discussions that will lead to decisions about your and your family members' care.

A sidebar - the case study I link to above has a line in the abstract that says: "There is no literature to date that discusses its incidence in the lower extremity."They should have had a librarian on their team - I located this article from 2002 with just a basic search: Cylindroma of the leg http://www.ncbi.nlm.nih.gov/pubmed/?term=11910240 . (Cylindroma is the old term for Adenoid Cystic Carcinoma. Other terms used in the research literature for this condition, according to the Medical Subject Heading for Adenoid Cystic Carcinoma:

  • Adenoid Cystic Carcinoma
  • Adenoid Cystic Carcinomas
  • Carcinomas, Adenoid Cystic
  • Cystic Carcinoma, Adenoid
  • Cystic Carcinomas, Adenoid
  • Adenocystic Carcinoma
  • Adenocystic Carcinomas
  • Carcinoma, Adenocystic
  • Carcinomas, Adenocystic
  • Cylindroma
  • Cylindromas

 
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