Kind words about the Cheeky Librarian blog from a health professional

I treasure all comments I receive, and have a special file for the ones that get emailed to me. I requested and was granted permission by the author of the comment below to post it on the blog. I have asked Ms. Kroc if she would like to write a post in the future for those of us facing ACC for the first time - stay tuned!-th

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Hi Teresa,

I was sent a link to your blog by one of the folks we've treated for ACC - and I have to tell you WOW! I'm so glad you're out there writing, collecting information, and helping people get connected. As you point out, ACC is a rare enough disease that it can be difficult for people who have it to find each other or find resources.

I am the medical social worker with NIU's Institute for Neutron Therapy at Fermilab in Batavia, Illinois (http://www.neutrontherapy.niu.edu/neutrontherapy/). A large percentage of the people we treat have ACC or other head and neck cancers. I'll be pleased to let the folks we treat know about your blog; people come to us for neutron radiation from across the nation, and occasionally internationally, and then return home when their treatment is completed. It can be hard to be away from home, in addition to the inherent stresses of a cancer diagnosis, and it would be a comfort to make connections with other people facing the same questions and issues.

Thank you for the research and writing that you do. It's a good work.

Warmly,

Jennifer

Jennifer Kroc, MSW

Medical Social Worker

NIU Institute for Neutron Therapy at Fermilab

New site to share - AlphaInventions

I have been reading blogs instead of posting to mine - I guess that means not that much is going on in the Adenoid Cystic Carcinoma front for me personally. Thanks to After Cancer, Now What, I learned about AlphaInventions today http://alphainventions.com. Still checking it out, but it looks like a great service, designed to keep up with blogs. Here is a link to more about AlphaInventions:
http://alphainventions.wordpress.com/2008/09/22/alpha-inventions

Newly diagnosed with Adenoid Cystic Carcinoma?

Welcome to this blog. I hope you find useful information here, as well as links to personal stories that may be of help to you as you face cancer and treatment.
I received this comment on an earlier post yesterday, so I figured I would answer it here:

"My dad has been diagnosed with Parotid Gland Cancer and was advised to have radiation/chemo over the next seven weeks - OR - go into a nursing home or hospice. I believe that there are alternative treatments that can be done instead of these deadly forms of treatments. Is there anyone out there who has survived this type of cancer? My dad is 75 and otherwise in relatively good health. Thanks in advance...Terri H. "

There are a lot of different cancers that appear in the parotid - a good entry that outlines the many things that can turn up in salivary glands is in MedlinePlus: http://www.nlm.nih.gov/medlineplus/salivaryglanddisorders.html . If you know of the particular cancer that was identified, I can look up specific information on it. Alternative treatments for cancer are being studied by the scientific community - personally, as a cancer patient, I did not find any with enough actual research for me that showed successful eradication of cancer, so I went the traditional route, using the updated radiation treatment. Radiation is tough - it is up to the patient and the health professionals to decide if that is the best route to go. Believe me - they look hard at the patient to see if they can take the span of treatment and the after effects. You can find information on some of the complimentary and alternative medicine treatments on this page at the National Cancer Institute: http://www.cancer.gov/cancertopics/treatment/cam . The healthcare team that is taking care of your father should be told of his wishes to explore alternative/complimentary treatment options - they may have clinical trials going on in your area that would accept your father for treatment studies.
After you and your father talk with the health care team about his wishes, take the information they share to your local medical library and get more information from evaluated, qualified (in other words, REAL) sources of biomedical research information. You can locate a library near you in this directory: http://www.nlm.nih.gov/medlineplus/libraries.html.
It is rough to get a cancer diagnosis, both for yourself and those that care for you. Working as a team to approach the cancer and treatment can help with coping, and coping leads to healing. I am thinking of you both, and anyone else facing cancer for the first or repeating time.

Arranging electronic access for your survivors

I know - a touchy subject, death. Just as I try to keep preparations going for disasters/emergencies/retirement, I do plan for the end of me, which has a much higher chance of actually happening. Since my life is pretty wrapped up in technology - social networking accounts, extra hard drives full of files, email accounts all over the place - I figure that is a part that needs to be dealt with by whomever is taking care of my affairs after I am finished.

There was a post on SlashDot last year on methods to arrange access to your digital life for your survivors:
http://ask.slashdot.org/askslashdot/08/11/25/178242.shtml

I saw this article yesterday:
Life insurance for your passwords: Legacy Locker
http://news.cnet.com/8301-17939_109-10192306-2.html

The Legacy Locker service isn't up until April. Since it is possible that online services can lose their data (like ma.gnolia's story earlier this year http://ma.gnolia.com/ ), you will still need to keep some sort of backup (print, file on a memory stick in your safe deposit box), just in case.

Next difficult/awkward topic - to stream the funeral over the Internet, or not:
Funerals are now just a mouse click away
http://omaha.com/index.php?u_page=2798&u_sid=10581311

Roundup of Adenoid Cystic Carcinoma bloggers

I received a question from the Assertive Cancer Patient [http://assertivepatient.com] about other ACC bloggers. Here are the ones that I know of - I sure hope they are all linked on this blog, but I will fix it if they aren't. I go out regularly to hunt down other ACC bloggers - please send me their blog addresses if you know of more folks out there. Thanks!

Cyndi's A Day In the Life With Life
http://cyndisadayinalifewithlife.blogspot.com/

Korean Cuisine
http://korean-cuisine.blogspot.com/

Molly's Musings/Brawley's Boobs--WHATEVER!
http://mebrawley.blogspot.com/

Adenoid Cystic Carcinoma-ACC
http://adenoidcysticcarcinoma.blogspot.com/

Libby's Page
http://www.command-voice.net/libby/home.htm

Adenoid Cystic Carcinoma (ACC) Journal
http://www.krysti.net/

"If you survive cancer, things, more times than not, do get better."

The quote in the title on this post is from Christine, who is another Adenoid Cystic Cancer Blogger. I received permission to link to her post: The Second Year - A time for looking back & looking forward - http://adenoidcysticcarcinoma.blogspot.com/2009/03/second-year-time-for-looking-back.html.

Adenoid Cystic Carcinoma in the news

I check Google News for ACC about once every week or two - and today found this item:

Peter Tork, of the Monkees, has been diagnosed with ACC, according to this story on Radar Online http://www.radaronline.com/exclusives/2009/03/former-monkee-peter-tork-has-cancer.php.

I then saw that Cyndi posted it on her blog also: http://cyndisadayinalifewithlife.blogspot.com/2009/03/i-was-quite-surprised-this-evening-when.html

UPDATE Mar 8, 2009: here is a short-lived link to Google News that should take you to all of the entries discussing Peter Tork: http://news.google.com/news?pz=1&ned=us&ncl=dfbZEHdlsjYZtwMctvrV2kRG1jrRM. Dang, I hate to see ANYONE join us on this rare cancer journey, but might this extra coverage get us some additional notice in the scientific arena? Maybe some young researcher will see this bit of news, and decide that their life's goal will be to search for a cure for this? Only time will tell -th

The other item in the news during the past month is this story from University of California-San Diego:
Cancer Cluster at UCSD http://www.sdcitybeat.com/cms/story/detail/cancer_cluster_at_ucsd/7774/
They are investigating the building that houses the Literature Department, since it seems to have a higher rate of cancer diagnoses than expected. I wonder what the cancer rate is in the building I work in at my university? I wouldn't jump to the conclusion that it is a 'sick' building if we had a high rate - but with the equipment being around since the 1970's (in our building, anyway), a person might jump there. I figure we are an aging population of college staff, and probably more prone to developing cancer. But hey, I am just a cheeky librarian, not an epidemiologist. If anyone wants to weigh in on the topic, please comment and I will post it after reviewing.

Personal experience with new Lands End sun protection clothing

Regular readers of this blog know that protecting myself from the sun has been very important. I have had to cover my head/neck area due to radiation, and the rest of me due to medications that I have taken that make me sun-sensitive.
I recently learned about the new Lands End line of sun protection clothing - Sun.Life - and posted a link to it earlier. I have had the chance to personally try out the long-sleeved cardigan, and review my experience with it here.
The cardigan zips up the front, and has two zippered pockets, sure to come in handy when the glaciers finally leave Omaha and I begin riding the Gypsy again. All three zippers have cloth tabs, making them easy to grab and open. I can wear it zipped up completely and not have any neck pain issues on the left (radiated) side of my neck - the knitted fabric is very soft and forgiving to the damaged skin. The length of the cardigan should cover my backside well while riding the bike, too. Another librarian tried on the cardigan, and commented that the fit was perfect - enough room in the sleeves to go over blouses, and the waistband is not tight, like some sweaters can be.
Unfortunately, the weather has not been warm enough for me to wear the cardigan alone outside, so I can't speak yet to its sun protection qualities. I plan to take it on a road trip very soon (its that time of year again!), so I look forward to reporting more on its sun protection properties later. I want to thank Lands End for the chance to personally try out this product. I only hope my experience with it helps others in their quest for sun protection.

Made it to another birthday!!

Yep, rolling along to that half century mark - turned 48 today, and glad-so glad-for every year and every day. Sure, I wish I could look as good as Sophia Loren as I age, but since I didn't look anything like her at 22, I figure I am out of that league altogether. As it is, I am working hard to be the best aging Cheeky Librarian there ever will be.
Sending love out to all those who have walked with me, pushed me, pulled me, and lived with me (that is the hardest job, I know!) over these 48 years. Here's to the next set of exciting decades!