Friday, April 30, 2010

Forgetting cancer by visiting the Woodstock of Capitalism

This weekend is the Berkshire Hathaway stockholders meeting in Omaha, and it is promising to be a fun, informative, and historic time for all. You can follow the activities through the Borsheims jewelry store site: http://www.borsheimsbrk.com/. You might even catch a photo or two of the Cheeky Librarian - I made it into a couple of the photos last year, along with my mom-in-law. If you get the chance, buy some Berkshire Hathaway stock (http://data.cnbc.com/quotes/brka OR http://data.cnbc.com/quotes/brkb) through your TDAmeritrade Roth Account (http://www.tdameritrade.com/welcome1.html), and come to Omaha for the next meeting! You and around 40,000 others won't be sorry.

Tuesday, April 27, 2010

Adenoid Cystic Carcinoma in the news

From Collie, Western Australia(click for map): The Will To Live http://www.colliemail.com.au/news/local/news/general/the-will-to-live/1804062.aspx. This story by Elysia Tilbrook is about Michelle Whitney, a mom who was diagnosed last year with Adenoid Cystic Carcinoma while she was pregnant with her third child. In the story, she says she is being treated with selenium - I found articles in PubMed about research on selenium in the prevention and treatment of certain cancers. Her community had a fund raiser for her back on April 16 to help offset treatment costs. I wish her and her young family the very best as she faces this with the rest of us.

If you or a loved one is newly diagnosed with adenoid cystic carcinoma

I am glad that you found this blog, but sorry that we have to meet under these conditions. There are links on the right side of the blog for more information on ACC, (also known by the acronym AdCC). If you are new to the topic and still under treatment, searching on the internet may not be the best actions you can take at this time, since you need to concentrate on getting healed up and staying strong. Please contact your local library that serves consumer health information, and have them do the searches for you so you will have a focused collection of information to take to your health care professionals the next time you discuss your treatment options and long term outcome expectations. You can locate such a library in your area by going to this link at MedlinePlus: http://www.nlm.nih.gov/medlineplus/libraries.html. Since this is a rare condition, finding out others' experiences may not be the best method for you to plot your own treatment path - in other words, you shouldn't be looking up your own crud on the internet at this time. Really. I used our Consumer Health Information Resource Service (CHIRS), and the librarians gave me the health information I needed at the time I needed it, and saved me from dwelling on individuals' stories, enabling me to concentrate on my own path without distraction. Of course, once I was out of active treatment, you bet that I traveled the web and added my voice to encourage others on this path, and still do so.
If you happen to be facing head/neck radiation, some of my coping strategies are recorded at the beginning of this blog - scroll down the page and you will find the posts.
If you are a cancer survivor (I still haven't found a better term for those of us on the other side of initial treatment), I salute you, and look forward to learning from you.
No matter who you are or how you found this blog, I hope some of the information I have recorded here is useful to you in some fashion.

Thursday, April 22, 2010

Celebrated my ten year anniversary at work

Yep, anniversaries of any sort are big with me these days, and the University of Nebraska Medical Center (http://unmc.edu) went out of its way to mark the decade milestones for its faculty this past Tuesday. I noted a cool coincidence in the meeting program - 3 of my cancer-care-related doctors also celebrated their 10th year at UNMC. I want to thank them here, publicly, for their 10 years of service to the University, for their service got me to my own 10 year mark. Wonder what the next 10 years will bring??!

Tuesday, April 13, 2010

Peter Tork will end his Hope On Project on April 30th

Peter Tork - musician extraordinaire, first of the Monkees, and now of the Shoe Suede Blues - and fellow Adenoid Cystic Carcinoma fighter, will be ending his Facebook page "Hope On Project" at the end of this month. Here is the message from his publicist posted at the site:
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It's time to say farewell to this wonderful page!

Attention all Peter Pals,

Peter does not wish to continue the Hope On Project at this time, as he is concentrating on other things. So, with that being said, this page will be taken down effective Friday, April 30, 2010.

THANK YOU ALL for helping us to raise awareness and funds for research for rare cancer. We did lots of other wonderful works in Peter's name, too! It's a such a blessing that he has beaten cancer, and we are prayerful that he has a happy and healthy future.

With love,

Dianne

P.S. We will continue the "Rays of Hope" Blanket Project through Elaine's "Blanket The World with Love" fan page.

http://www.facebook.com/#!/pages/Blanket-The-World-With-Love/186034570869?ref=ts
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Boy, the comments from some of the fans of this project are brutal - ripping him for laying down the project once his initial cancer treatment was over. One said, "this site was better last year" [when he was going through treatment and follow-up]. Yep, some readers don't want to hear that cancer patients go back to their lives and livelihood, me thinks. Here's a protein drink raised to you, Mr. Tork, and to all the funds you raised for ACC research - I wish you many years in the future of making money for other causes, including yourself, and raising a ruckus that has NOTHING at all to do with cancer-related topics.

Sunday, April 04, 2010

Adenoid Cystic Carcinoma in the news

A few stories out of recent news items on ACC:

Tim Pearson of Glen Innes, New Zealand is in the news again: http://www.stuff.co.nz/national/health/3533253/A-10-year-cancer-battle.
I wrote about Mr. Pearson back in 2008: http://cheekylibrarian.blogspot.com/2008/08/adenoid-cystic-carcinoma-in-news.html. Back then, he was just hoping to get his cable hooked up. I guess he is still having a hard time making ends meet. I would think that New Zealand would take care of their terminally ill citizens a bit better than either story leads one to understand. If anyone out there can explain the New Zealand 'sickness benefit', send me an email. For folks here in the US facing terminal illness, I would suppose that there is disability through Social Security (prepare for a long application process), and one can go into hospice. Hospice is better to go into earlier than later - it is supposed to cover medical bills involved with palliative care, and there isn't a time limit on it, as far as I know.
Here's a cheer to you, Mr. Pearson - wishing you only the best. You are leading the way down the path that many of us will follow after you.

Gregory Jon Lynn of Houston has ACC, and has been treated by the VA: http://www.examiner.com/x-12971-Houston-Legal-Issues-Examiner~y2010m3d20-VA-wont-pay-for-cancerstricken-vets-treatment-yet-illegals-can-get-free-medical-care. The VA has run out of treatment options (not unusual on our type of cancer), and the story says that he was referred to MD Anderson. The problem comes up that the VA refuses to cover costs involved in a clinical trial that MD Anderson is running, and the VA office has in fact said that they have "no intention of referring Mr. Lynn to the MD Anderson trial". Our cancer is a tricky thing, as are clinical trials - a person would have to meet rigorous standards to be accepted into a trial, no matter who was paying for the treatment. I don't know the facts behind the Examiner's story about illegal aliens receiving free medical care and how that applies to this ACC warrior's individual case. I would wager that ANY alien, illegal or not, would still have to meet the strict standards of any clinical trial to receive the treatment protocol. My heartfelt wishes go out to Mr. Lynn's family as they face the brutal facts that ACC brings to all of our lives. As a veteran's wife and former Army wife and civilian, I support our VA system and all it tries to do to care for those that sacrificed so much of their lives for our freedoms. Sometimes cancer wins in the end - that sucks.

Gabriele Anderson, track star of the University of Minnesota Gophers, is in the news for being awarded the Richard "Pinky" McNamara Student-Athlete Achievement Award. http://www.gophersports.com/ViewArticle.dbml?DB_OEM_ID=8400&ATCLID=204919824. You read about Ms. Anderson on this blog about a year ago: http://cheekylibrarian.blogspot.com/2009/05/adenoid-cystic-carcinoma-in-news.html. The award she received is given to a student athlete who has inspired all... Congratulations, Ms. Anderson, on being recognized for your strength in the face of ACC.

Thursday, April 01, 2010

Google is now Topeka

Thought you would enjoy this post I discovered:
http://googleblog.blogspot.com/2010/04/different-kind-of-company-name.html. May your day be full of fun and no fools.
 
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