Thursday, December 31, 2009

Adenoid Cystic Carcinoma in the news

1. "Tricia's Tree" raises money for cancer research
http://www.southtownstar.com/news/1958278,122509triciastree.article
The SouthtownStar reports about a fundraiser conducted at the First Midwest Bank in Crestwood (Il) by the husband of Patricia Mason. Mrs. Mason passed away earlier this year from ACC. Folks that donated money to the American Cancer Society at the bank could place a purple ornament on the tree, with purple being Mrs. Mason's signature color. My condolences to Mr. Mason and his daughter for their loss of such a cool lady, and I congratulate them on such a great way to mark her memory for others to follow.

2. Another link that I found shouldn't have been where I found it. It is evidently a copy of a letter written to an insurance company, complete with great journal references, about benefits of using proton radiation on ACC. I think it is from the discussion list of ACCOI, based on the title of the header, but not sure how it got posted on the blog where I found it (if I had seen it on the discussion list only, I wouldn't post it here - very bad etiquette. Posting it since I found it "in the wild".): "Re: [ACCOI] references and research articles regarding dosage amounts http://dzone4alternativemedicine.blogspot.com/2009/12/re-accoi-references-and-research.html .
If you want to get copies of the journal articles mentioned, please call/go to the nearest library listed in this directory: http://www.nlm.nih.gov/medlineplus/libraries.html , and ask how about their services for consumer health information. Usually, if the journal is held in the library, you can go and make a copy for yourself, but if it has to be requested from another library, there may be a fee involved (please consider it a dry-cleaning fee, and just cover it to get access to the full-text).
Here are links and email addresses for the ACCOI website and discussion board, if you wish to join:
ACCOI website: http://www.accoi.org
Post message: Adenoid_Cystic_Carcinoma_Organization@yahoogroups.com
Subscribe: Adenoid_Cystic_Carcinoma_Organization-subscribe@yahoogroups.com
Unsubscribe: Adenoid_Cystic_Carcinoma_Organization-unsubscribe@yahoogroups.com
List owner: Adenoid_Cystic_Carcinoma_Organization-owner@yahoogroups.com

Thursday, December 24, 2009

Hello from the Blizzard of 2009

We are supposed to get 14 inches of snow or more by the time the storm ends Saturday night, but right now, about 10 inches of it is tearing through the air at 40 mph. Lucky the dog was outside at midnight, answering the call of nature - if it is true that animals speak at midnight on Christmas, I didn't hear what he said over the wind (probably better that I didn't, though). Half the household has to work tomorrow - Walgreens is open, as is security at our university, so two will be leaving early to get to work, keeping any Christmas celebrating postponed until tomorrow night. I wish everyone a great holiday, and may all your dreams come true. I thank goodness that I have an insulated house with running water and central heating to face this storm with, instead of how folks had to face bad winters in the past here in Nebraska. Merry Christmas to all!

Thursday, December 17, 2009

Nothing funny about shingles

I was diagnosed with shingles on Tuesday, and have tried to come up with something funny to say about the experience, but have lost my grin. I waited an hour to set up a same-day appointment after we first saw the blister rash (the dear husband was the first to diagnose it, so I was only going for a second opinion). The PA that I met with later that morning prescribed an antiviral med, and offered pain medication later if I need it. The reason I was so hot on getting the antiviral medicine is to try to keep down the postherpetic neuralgia that follows shingles - they say that your best chance to fight this is by getting medicine within the first 72 hours. Since I already wear enough neuralgia to share with a neighborhood, keeping more at bay is a big deal to me.
Lucky for me, I don't do paper hanging for a living (the rash is on the upper chest by my right arm). But wearing clothes is an issue - yet required for my job, imagine that. Having plain white t-shirt between me and outer clothes has been a big help, keeping the rougher fabric away from the rash.
I know that anyone with cancer or other diseases that affect the immune system have a higher chance of developing shingles, so this wasn't a total surprise. Just a big disappointment, another pain to deal with, and not how I wanted to face the holidays. I work hard to be just as reliable and vital at work as before the cancer came, and hate it whenever something comes up to remind the bosses that I am 'damaged goods'.
For more information about shingles, including photos in case you need to check out your own rashes, check out MedlinePlus: http://www.nlm.nih.gov/medlineplus/shingles.html

Sunday, December 13, 2009

Recent literature on Adenoid Cystic Carcinoma

If you or someone you know experienced ACC and was treated at the Ohio State Medical Center, you might be anonymously mentioned in their recent article published in The Laryngoscope:

Patterns of recurrence and survival of head and neck adenoid cystic carcinoma after definitive resection. http://pubmed.gov/19877226 . (To get full text of this article, check with your local library listed here: http://www.nlm.nih.gov/medlineplus/libraries.html - interlibrary loan fees may apply. You can also pay for a one-day access fee to the publisher off of this page: http://www3.interscience.wiley.com/journal/122666245/abstract.)
The abstract of this article says that there was "no difference in survival, rate of recurrence, or time to recurrence" between patients that received radiation therapy and those that received surgery alone. Speaking with my taste-impaired tongue, I would really want to spare anyone else radiation therapy if there is no evident benefit in keeping the cancer at bay, but this research only looked at 57 people that received radiation, out of a total of 99 people. Too small a group, folks. What I would hope to see is someone to re-run this research on many tertiary care center records, and get some useful evidence to help guide the treatment protocols for my type of cancer.

Another recent article, in the journal Cancer E;pidemiology, Biomarkers & Prevention, describes incidence rates of cancers of the major salivary glands, including Adenoid Cystic Carcinoma: Incidence of Carcinoma of the Major Salivary Glands According to the WHO Classification, 1992 to 2006: A Population-Based Study in the United States. http://pubmed.gov/19861510 (You can get an interlibrary loan copy - may incur fees - from the libraries listed in the link above, or go directly to the publisher's site and pay for access: http://cebp.aacrjournals.org/content/18/11/2899.short ) I guess this one may include me, since my cancer was detected and reported in 2006.

Friday, November 27, 2009

Going away to celebrate the 25th Anniversary

It isn't the destination, it is the journey, and what a journey it has been! It is probably a good thing those two in the photo didn't know what they were up against in the 25 years ahead of them. 2 wonderful children; 2 wartime activations; 9 moves, including two overseas (I might have forgotten one or two); 3 stock market crashes; 2 experiences in purchasing a home; loss of loved ones; welcoming new loved ones; but overall, pretty darned lucky in life and in love. We are heading back to Kansas City to see the Plaza lights - that was about the most we could afford when we first married and had one night together before I headed back to college and he back to Ft. Sill on Monday after our wedding on a Dec. Saturday. We are going to splurge this time, and actually stay in town two whole nights...

Thursday, November 26, 2009

I wish everyone a fine Thanksgiving

I have so much to be thankful for, and you, the reader of this blog, are on my list. Thank you for following this blog, and for letting me know how the information (as well as occasional jokes) has been a help to you.

Monday, November 23, 2009

Turning down comments, thanks to spammers

I have been receiving a ton of spam comments from a couple of my blogs, including this one, so I am adjusting the comment feature to see if they will leave me alone in the future. Most of my regular readers know my email, and those that are new can find me through the profile. Just remember - neither I nor my readers need any more information about drugs for body parts that I do not possess.

Saturday, November 21, 2009

Adenoid Cystic Carcinoma in the news

A fellow Nebraskan with Adenoid Cystic Carcinoma is now in Tijuana, Mexico undergoing treatment at the Oasis of Hope. Here is the story about Adam Spady's current fight with ACC, as told in the Imperial Republican newspaper: http://www.imperialrepublican.com/index.php?option=com_content&view=article&id=1394:bake-sale-to-benefit-adam-spadys-cancer-treatment&catid=36:news&Itemid=76

I took a look at his recent Caring Bridge journal entry, where he does quite a job at explaining how a long-time cancer patient views the treatment system here in the USA. Since I too have had life altered due to treatment, I completely understand his refusal of more chemo, now that his ACC is back. (Hasn't been much chemo to show effectiveness against ACC in the research.) I am so glad Adam has his family with him, and wish them all the best in their fight. If you are interested in donating to his travel funds, there are instructions in the newspaper article about who is collecting donations. (Note to anyone wishing to create a non-profit to support cancer patients - please consider writing checks for travel costs incurred by patients. Please!)

Another item in the news is a press release from the Exelixis company, who presented promising results on their drug known as XL147 this week at the AACR-NCI-EORTC International Conference on Molecular Targets and Cancer Therapeutics in Boston. In the press release http://ir.exelixis.com/phoenix.zhtml?c=120923&p=irol-newsArticle&ID=1356958&highlight=, They specifically say that a patient with adenoid cystic carcinoma "had a documented decrease of metastatic disease". The trial only included 21 patients, though, and has only been going since October 6, 2009. Patients have been treated with a combination of the XL147 and 150mg of erlotinib. There are currently 5 studies in ClinicalTrials.gov that are using XL147: http://clinicaltrials.gov/ct2/results?term=xl147. I think this is the one that was reported at the conference: http://clinicaltrials.gov/ct2/show/NCT00692640?term=xl147&rank=4. I am very happy for the one ACC patient that experienced a measurable decrease from this drug, but they need to get a whole lot more of us in that study before the results are truly remarkable. If you have ACC mets, take a look at understanding clinical trials here: http://clinicaltrials.gov/ct2/info/understand , and consider contacting them to see if you can participate. Here is the contact information:

Please refer to this study by its ClinicalTrials.gov identifier: NCT00692640

Contacts
Contact: Exelixis Contact Line 1-866-939-4041

Locations
1. United States, Michigan
Karmanos Cancer Institute Recruiting
Detroit, Michigan, United States, 48201
Contact: Erik Troxtel 313-576-8496
Principal Investigator: Patricia LoRusso, DO

2. United States, Tennessee
Sarah Cannon Research Institute Recruiting
Nashville, Tennessee, United States, 37203
Contact: Narquita Kizzie 615-329-7426 Narquita.Kizzie@scresearch.net
Principal Investigator: Howard A. Burris, III, MD

Tuesday, November 10, 2009

Fight cyberchondria - use a librarian to help search health topics!

Saw this in the Washington Post:
A glut of Google can give you a virtual fever

http://www.washingtonpost.com/wp-dyn/content/article/2009/11/06/AR2009110603473.html


from the article: "It's a paradox: The more you read in an attempt to reduce your fear, the more you try to figure things out, the more anxiety peaks. Very few people know how to navigate the Internet and evaluate information when they're anxious, and yet that's when they tend to go online."

If you are searching for health information, and somehow found this blog, please put the keyboard down and contact your local public library. You can request searches with their reference department, and they will find only the information you need. My reference librarians kept me from focusing on how many people die with my kind of cancer, and I could concentrate on what my health care team was telling me, and the hard work of healing.

Monday, November 09, 2009

What brought about the Cheeky Librarian blog?

I gave a bit of the reason on why the Cheeky Librarian blog came to be when I spoke at the Creighton University event. I first started writing emails to my friends to keep them up with the adventures that culminated in my diagnosis of ACC. Then, since I had already been a librarian blogger (http://libeducation.blogspot.com), I figured this medium might be the answer I was looking for in spreading the word. My posts began with my radiation treatment, since I figured telling my experiences might offer someone else a bit of information if they were on a similar path. (Adenoid Cystic Carcinoma is so rare, telling more information about my diagnosis wouldn't offer much to anyone else unless they were my true friend or a voyeur, and my true friends already knew most of the story, so I haven't written much here.) My mom generally said in the best mom-like way that one's issues do not impact the universe, which I take to mean that just because I am going through this stuff, I should not expect others to be as wrapped up in it as I felt some days. So having the blog gave me a venue to record the events in a non-intrusive way.
A funny thing happened while writing the posts, though - I think I read them more than anyone else. My writing became my own cheer leading, showing me that I had already endured a lot, and I could endure more as the radiation treatments zapped their way from parotid to skull base every business day for 6 weeks. Even in the darkest days, I saw humor from earlier ones, and could then find the humor in current situations. On days when I feared going out in public because of the way I looked, I saw photos of myself and figured I could bear the stares again. I was reminded of the kindnesses of my family and my friends, and felt buoyed up all over again, as if they had just done the kindnesses.
Now that I am healed up (from both the initial treatments, and the skull surgery that followed in 2007), I keep adding to the blog in order to raise awareness of others facing ACC (check out the ACC in the news posts as well as the blogs on the right side of this blog), sources of good information, and general life-stuff. I still read this thing, and need to see that life does go on, scan-dances and all.

Adenoid Cystic Carcinoma in the news

From Salt Lake City's Deseret News: Team, Grandma Lift Each Other
http://www.deseretnews.com/article/705342286/Team-grandma-lift-each-other.html

Hey, hey, he's a Monkee! - an interview with Peter Tork from the Lafayette-West Lafeyette, Indiana Journal and Courier:
http://www.jconline.com/article/20091106/ENT06/911060342/Hey--hey--he-s-a-Monkee-

And another story about the discovery of the gene that causes ACC http://cordis.europa.eu/fetch?CALLER=EN_NEWS&ACTION=D&SESSION=&RCN=31360
The statistics given in this story may cause one to freak out (I am reserving judgement at this time): 80%-90% ACC patients die within 10 to 15 years of diagnosis, with 15 year survival rate of 40%. (This just means I gotta live faster, that's all.)

Tuesday, November 03, 2009

Adenoid Cystic Carcinoma in the news

I saw this in the news over the weekend:
$6.5 million gift to UCSF from Irwin and Joan Jacobs for head and neck cancer research
http://news.ucsf.edu/releases/6.5-million-gift-to-ucsf-from-irwin-and-joan-jacobs-for-head-and-neck-cance/

Mr. Jacobs was diagnosed with Adenoid Cystic Carcinoma in 2007, and went through treatment. He and his wife have endowed two distinguished professorships, one in otolaryngology and one in radiation oncology. The press release says it is thought to be the largest gift for head/neck cancer research.

I picked up a couple of things from this announcement:
I hope all of us ACC-wearing folks are known for something other than having a rare cancer - we are all so much more than that, as his bios illustrate. Neither one that I checked says anything about having rare cancer:
http://en.wikipedia.org/wiki/Irwin_M._Jacobs

http://www.qualcomm.com/who_we_are/leadership/exec_bios/irwin_jacobs.html

Another thing - I know now how big a donation I need to make to support Adenoid Cystic Carcinoma research, and have it be the biggest (grin!). If you have the chance to donate to support research on this rare cancer, I can recommend the Adenoid Cystic Carcinoma Research Foundation: http://www.accrf.org/. And they aren't expecting us to call only when we have a spare $7 million lying around - they take any amount and put it to very good use.

Tuesday, October 27, 2009

Join Jeanne Sather and I in Omaha at Creighton!


If you are in Omaha, please come by the Creighton Health Sciences Library at 3:30pm and hear Jeanne, I, and Dr. Amy Haddad speak on "Writing as a Therapeutic Tool". Dr. Haddad is a poet, Jeanne is a journalist, and (of course) I am the librarian. It promises to be a great hour of idea sharing! I am really looking forward to it.

Saturday, October 24, 2009

CNN's medical expert weighs in on Suzanne Somers' advice

I don't generally go to CNN for my health advice, and am not sure how many of my readers do, but I found this opinion piece from CNNhealth.com's Conditions expert, Dr. Otis Brawley, and wanted to share for your information.
http://www.cnn.com/2009/OPINION/10/24/commentary.brawley.cancer.treatment/index.html?eref=rss_latest
I am all for investigating with my health care provider any and all alternative and complementary treatments - note: WITH my health care provider. My radiation oncologist probably got real tired of my reporting each week what multivitamin I was taking, but I reported them along with the prescribed medications, just in case it made a difference (example: read in the oped piece about Vit. C interactions with HIV meds). And all during my initial treatment and recovery months, I felt attacked if someone came over and started forcing their (usually non-health care professional) opinion of how I should be or should not be treated. Suzanne Somers just did it more publicly than most. Just the other night, while taking asthmatic number one son to Urgent Care, a stranger in the waiting room walked over to me and thrust a card at me with a name of a 'natural supplement' that she cured her son's asthma with. Gee, let me look up the evidence on that product, and get right back to you.
If you are considering other treatments, and they are out there in all levels of 'good' and 'bad', please let your health care provider know about them, and ask for a search by a medical librarian on any testing that has been done previously or currently with the product/treatment. Scientific studies are being conducted on many alternative treatments, and you can find out if you qualify to be added to the patient group and how to participate - just ask. But as a librarian and a fellow cancer warrior, I recommend that you take any advice that comes from outside your cancer treatment team (meaning: in-laws, concerned adult children, the Internet sites, discussion lists, celebrities, anonymous emails asking for money for products, whatever) with a huge grain of salt, and run the advice by your cancer treatment team. Yes, if there had been any way I could have avoided the radiation and surgery by dancing outside in the moonlight naked, I would have, you betcha (sorry, neighbors). But when considering the evidence showing outcomes of treatment procedures, me and the team (picture them like the Justice League) figured that was the best route at the time. Someday, folks will look back at my treatment as barbaric, as they simply swallow a pill to change the genes of Adenoid Cystic Carcinoma, just as we look back at the practice of bleeding patients as barbaric.
Repeating: evaluate the source of the information you are considering. Whatever worked for Ms. Somers, I am happy for her and wish her well, but wonder at the same time why she is charging for her book if it is going to do so much good health-wise - why not just put it up on the web for free? We need to look at other information offered to us the same way - if a company/person is making money on the advice/product that they are proposing cures cancer with or without doctors, how does that skew the advice they are giving? Yes, that includes checking to see if your doctor is being paid by any of the pharmaceutical manufacturers or medical device manufacturers - a patient should ask, and consider any potential conflict of interest.

Tuesday, October 20, 2009

Bathroom is DONE!

Just need to install the towel racks, and buy one more rug to put in front of the shower. Dear husband and I put the last of the IKEA drawers and doors together tonight (catalog, p.202-203). The sink plumbing (water in and drain out) took about 12 visits to Lowes. We have another set up just like this for our upstairs bathroom, so we are now trained to install that one too - maybe for spring break? Anyway, it was great to make plans and see them come to completion - I doubt I will ever take that for granted again.

Thursday, October 15, 2009

Adenoid Cystic Carcinoma in the news

Thanks so much to Korean Cuisine, here is press release on a story from the Proceedings of the National Academy of Sciences (PNAS):

New cancer gene discovered
http://www.physorg.com/news174662445.html

Says that they have determined that ACC is caused by a newly discovered fusion gene. From the press release:
"Now that we know what the cancer is down to, we can also develop new and more effective treatments for this often highly malignant and insidious form of cancer," says professor Göran Stenman, who heads the research group at the Lundberg Laboratory for Cancer Research at the Sahlgrenska Academy. "One possibility might be to develop a drug that quite simply turns off this gene."

I couldn't find the citation listed in PubMed yet - here is what the press release included:
Recurrent fusion of the MYB and NFIB transcription factor genes in carcinomas of the breast and head and neck; Marta Persson, Ywonne Andrén, Joachim Mark, Hugo M. Horlings, Fredrik Persson, Göran Stenman

Wednesday, October 14, 2009

How to read articles on health and healthcare

Dr. Alicia White wrote this article that was posted to the United Kingdom's National Health Service site this past January:

http://www.nhs.uk/news/pages/howtoreadarticlesabouthealthandhealthcare.aspx

from the article: "... you need to analyse the article to see what it says about the research it is reporting on. Bazian (the company I work for) has appraised hundreds of articles for Behind The Headlines on NHS Choices, and we’ve developed the following questions to help you figure out which articles you’re going to believe and which you’re not."

Sunday, October 11, 2009

NIH is expanding the Rare Diseases Clinical Research Network

from a press release seen at http://www.medadnews.com/News/Index.cfm?articleid=656279
(here is the original press release from the NIH site: http://www.nih.gov/news/health/oct2009/od-05.htm )

It appears that we as Adenoid Cystic Carcinoma survivors may have a chance to directly participate in clinical data collection. Describing the second phase of the RDCRN: "In this second phase of the RDCRN, the University of South Florida will continue these data management efforts, under a new name and with a slightly different charge, as the Data Management Coordinating Center (DMCC). The DMCC will develop uniform investigative clinical research protocols for data collection in collaboration with the RDCRN Steering Committee, monitor protocol adherence, data collection and data submission, and work with the each consortium's Data and Safety Monitoring Boards to establish protocols for adverse events notification and reporting."

MD Anderson is one of the 19 consortia listed, and will be studying ACC and other rare salivary gland cancers:
"CONSORTIUM TITLE, INSTITUTION, AND PRINCIPAL INVESTIGATOR: Molecular and Epidemiologic Characterization of Salivary Gland Carcinomas - University of Texas M.D. Anderson Cancer Center - Adel K. El-Naggar, M.D., Ph.D.
NIH COLLABORATORS: ORDR, NIDCR
DISEASES TO BE STUDIED: Salivary gland carcinomas: mucoepidermoid carcinoma (MEC), adenoid cystic carcinoma (ACC), adenocarcinoma (ACC)"

The RDCRN has not updated their page that shows open studies since 1 August 2009: http://rarediseasesnetwork.epi.usf.edu/study-overview.htm. I will keep watch on their homepage to see if the new studies are listed: http://rarediseasesnetwork.epi.usf.edu/ , as well as watch for that new DMCC site to start up - that may be the site that offers information on the new studies. I will announce the arrival of such a website on this blog, you can guarantee it. I want every one of us counted (that the study will include) in any future studying that may be done. (Caveat - I just saw this announcement at NIDCR: http://www.nidcr.nih.gov/GrantsAndFunding/See_Funding_Opportunities_Sorted_By/ConceptClearance/CurrentCC/TumorBiorepository.htm, so the data Dr. El-Naggar may be seeking may be biospecimens, and not our personal data. If this is so, I am slightly frustrated - someone should be creating a patient repository of our information to see if there is any common denominators that lead scientists to see what brings on this kind of cancer.)

Dr. El-Naggar, the PI on salivary gland project, is also Editor-in-Chief of the BioMed Central journal, "Head & Neck Oncology" http://www.headandneckoncology.org/edboard/start.asp?id=725260, and is a heavy-duty researcher in the pathology world: http://www.ucl.ac.uk/hnods/Council/Adel_El_Naggar . Here is his faculty page at MD Anderson: http://faculty.mdanderson.org/Adel_El-Naggar/Default.asp?SNID=1060595112

Tuesday, October 06, 2009

Man, I hope Keas has a librarian or two

I just saw this story on the New York Times site: Adding Health Advice to Online Medical Records http://www.nytimes.com/2009/10/06/technology/06bosworth.html?_r=1 .
The reporter, Steve Lohr, says in the article:
"The long-term answer to improving the health of the nation’s population and curbing costs, experts agree, is to help people make smarter decisions day in and day out about their own health. And the most powerful potential tool in the march toward intelligent consumerism in health care may be the Web."

I completely agree. Speaking as a librarian that has delivered consumer health information (and used consumer health information to make my own decisions) now since 1992, my recommendation to Mr. Adam Bosworth, owner of Keas, Inc. (http://www.keas.com), is to hire a team of librarians to join up with the computer experts, and the result will be successful and life-changing to those that sign up for the service.

Friday, October 02, 2009

Still looking to the future strongly

It has been a year since the last big round of doctors and scans and the worry (that would not leave no matter how much I worked to make it go away) that the cancer had returned, all the while during the worst global economic meltdown of my lifetime - and I am still looking to the future. I have my last radiation oncology appointment next week - seems I am too boring for them to continue following (grin). Well, really, this is the natural progression of their care - the doctor won't want to see me again until late effects might arise from the radiation I received (in about 20 years, if I have anything to do with it). Throughout the last 3 years of healing after the cancer treatment, I have been working towards raising my head and looking outward, instead of inward, and I have arrived at that point. Heck, I am even considering what my next career step might be in academia-land - how fortunate is that? Yes, I still deal with aches/pains/lack of taste/cold intolerance, but hey, that's life, and I am dealing with it in style (I hope). I remain ready to help anyone locate information sources for their own treatment paths - I am still a librarian, thanks to that skilled surgeon that removed the skull lesion in time, and the original surgeon that removed the tumor from my cheek, and the health care professionals/family members/friends that never gave up on me and kept me from giving up on my own ability to overcome some major crud (and that includes readers of this blog of all flavors-you know who you are!). To all readers out there - if there has been anything in this blog of use to you as you travel your own individual path, I am glad and it makes it worth the work. Please always remember to discuss any self-care activities you might read that worked/didn't work for me with your own health care professionals - each of us is different, and our care is individualized, so the health care professionals need to know what we are doing in the self-care arena. Here's to many more years for us all.

Sunday, September 27, 2009

Adenoid Cystic Carcinoma in the news

Thanks to a great northern reader, I received the following news story in my email about a fundraiser for an ACC warrior:
Fundraiser set for woman with rare form of cancer
http://www.wausaudailyherald.com/apps/pbcs.dll/article?AID=2009909250663
(another story with photo http://www.wausaudailyherald.com/article/20090923/WDH0101/909230632/1981/WDHopinion)
The fundraiser actually took place yesterday for Kimberly Kukinski, 25, in Weston (Wisconsin, I think - the bad thing about online newspapers is that they rarely say what state they originate from). Wishing you and your family the best, Ms. Kukinski. With the support you have experienced, you will go far, in this Cheeky Librarian's opinion.

Still repairing the home place

Apologize for the long stretches without a post, but number one son works nights every other week, and is now staying days in the computer room, so I don't have the access to this machine that I used to enjoy. Here's a tip for anyone that would like to meet friends, neighbors, and complete strangers - set up a dumpster in your driveway, and fill it with an assortment of damaged drywall, bathroom fixtures, and various items from around the home. Then just wait - soon, the world will be knocking at your door, asking for permission to pick through the pile for treasures. Or, they won't knock, and just empty their trunk into your receptacle. Either way, you will broaden your network of contacts faster than 'friending' on Facebook...
This is our 25th year of marriage. Instead of Cancun or a trans-Atlantic cruise, we are repairing the house. Believe me, it will be a better time and less stress than a big vacation, and we will be able to enjoy our home even more!

Wednesday, September 23, 2009

The answer: 746

The question: how far must a Cheeky Librarian go to get to the nearest IKEA? Sorry for the lack of postings on this and my other blogs, but renovations on my house are taking over my life. And I am so glad to be able to experience this! A couple more weeks, and things should be getting back to a manageable level...

Tuesday, September 15, 2009

Goodbye Patrick

Patrick Swayze has died from cancer. Dammit.
I guess I am less than 6 degrees separated from him - I am a also a reluctant member of the cancer club, and I live 3 blocks away from where the hotel scene was filmed for the movie To Wong Foo... you can see it as it used to be about 3:09 minutes into this video snip http://www.youtube.com/watch?v=FbwYsfyEEOc&feature=fvw . That is the place I stayed at during my very first visit to Omaha in 1992. It was torn down for a strip mall before we moved here in '99, but the movie was filmed in between.
His acting in the movie Ghost kept me going while my husband was in the Gulf War - it was the last movie we saw together before he shipped out. We knew privately between us that we figured we would meet again, no matter what, and the movie helped to reinforce that idea.
Now his example of how to tell cancer to go to hell and keep on working on new projects keeps me going in a different way.

Saturday, September 12, 2009

Adenoid Cystic Carcinoma in the news

Checking the news, I located the following stories on our rare cancer:

Bout with cancer hasn't affected Pomegranate employee's upbeat attitude (Greenville News)
http://www.greenvilleonline.com/article/20090902/CITYPEOPLE/909020302/1062

Friend remembered with fund-raiser (MassLive.com)
http://www.masslive.com/metroeastplus/republican/index.ssf?/base/news-5/1252394290285930.xml&coll=1

Thursday, September 10, 2009

Preparing for winter

Ok, no one specifically TOLD me that having a plate in your head gives you more headaches in the winter. Um, guys - when I was showing up in January with really bad headaches, you could have said - yes, you will be experiencing those with the low temps. Honest, I would rather have gone that direction rather than thinking that critters were growing in my head again...
In the interest of preparing for yet another plains winter, complete with frigid wind chills, I have been scouting out solutions to keep the head warm as I walk from parking to work, from the car to the store, etc. (We aren't talking about going on marathons, here, but just something to keep the day from starting out with a roaring headache.) This one seems interesting: Skull face thermal mask http://xchoppers.com/product_info.php?products_id=1151. It would come up around the plate area near my left ear, cover the radiated area on my left neck and cheek, and keep the hair from messing up. Yeah, that's the ticket...
If I want to go with a more ordinary fashion statement, military surplus offers a choice:
GI Polypropylene Balaclavas
http://www.militaryclothing.com/IBS/SimpleCat/Product/asp/hierarchy/0O06/product-id/500425.html . Or this company, Killer Hats (love the name!), offers a 6 in 1 extreme cold weather hood http://www.killerhats.com/hhh.html .
Let me know if you see other choices I should consider. I need something that will cover the head and keep out the wind for no more than 20 minute stretches of time. I will let you know if I decide to go in for extreme camping, so we can search for those Arctic survival gear head coverings!

Catching up;

One thing that went by the wayside during cancer treatment and recovery was keeping up the household repairs. We are currently fixing that situation - the plumber and his crew is due in any minute now to wreck our basement and sewer stack, and fix it all back up again. Home remodeling has to be way up there on the stress scale, but I know we will be enjoying freshly painted walls and working drains after they get done doing their magic.

Wednesday, September 02, 2009

Maybe I COULD be a food critic

Just learned that they have developed an electronic tongue that 'tastes' sweetness like the real thing:

Hmmm - imagine me sitting down, the waiter placing the napkin in my lap, and after the first course is served, I break out a plastic box. The waiter is concerned - could I be applying makeup at the table? (Gasp!) I reassure him that this is the machine that I will judge the taste of the food with for my food column.Yeah, it could happen...

Tuesday, August 25, 2009

Life is just one adventure after another

I have been very busy the past couple of weeks, living life. Our university has geared up for another year of important instruction for our future health care professionals - it is a real honor to be serving the students and the faculty with their information needs, as they go about their business of saving lives. The homelife has also been busy - number one daughter returned from her summer in Turkey, and began her Freshman year at the state university. Number one son has lost a room mate, so will be moving home for economical reasons until he can save up enough money to change his own future. Dear husband just celebrated his last 4oth birthday, and really liked the Crystal Skull I gave him (figure one of us should still drink alcohol). I haven't been doing much in the evenings, just recuperating from the job each day - guess that means I have reached middle age, huh. Here's to everyone living their lives as they see fit and to each their own abilities.

Monday, August 17, 2009

Pain as a predictor of head/neck cancer survivorship

After Cancer Now What has a post about a recent research article in the August issue of Archives of Otolaryngology-Head & Neck Surgery : The Role of Pain in Head and Neck Cancer Recurrence and Survivorship http://archotol.ama-assn.org/cgi/content/abstract/135/8/789 .
This longitudinal study followed 339 patients with head/neck cancer at the University of Iowa between Feb 28, 1998 and Nov 30, 2001. Self-reporting surveys were filled out by the patients, indicating their level of pain. From the abstract: "Pain was associated with age, general physical and mental health conditions, depressive symptoms, survival rate, and recurrence within the first year. The 5-year survival rate was 81.8% for patients with low posttreatment pain and 65.1% for those with high pain."
Note: I have not read the full text of this article, just the abstract. After Cancer Now What mentions more, possibly from a press release about the article. You can request the full-text from your local library, or from one listed in this directory: http://www.nlm.nih.gov/medlineplus/libraries.html
If you are experiencing pain, tell your doctor. If attention isn't given to figuring out what is causing your pain, tell another health care provider. Keep telling. Pain is a biggy - a red flag symptom - and it should be monitored and managed, just as your other symptoms. My health care team has addressed my various pains quickly each time I have experienced them - the headaches, which turned out to be the benign "whatever" growing between the layers in my skull; the chest and abdomen pains, both of which resulted in extensive scanning that didn't turn up cancer, thank goodness, but I can now attest that scans do not reduce pains (figure they are just due to old age, and I live with them). I run around with a headache most days that ranks about a 4 on the pain scale - other days, just like before cancer, I have stronger headaches, but nothing like when that thing was growing in my skull, or the original tumor that caused me pain for 3 years. Pay attention to pain, and let your health professionals know if you are experiencing "the usual", or something more.

Saturday, August 15, 2009

Cancer - becoming another chronic illness?

There is a report out in the August 15th issue of Cancer Research that cancer deaths are decreasing, which leads one to expect more of us to be living longer with the disease and treatment after-effects:
Cancer Deaths Declining, Especially Among Young
http://www.usatoday.com/news/health/2009-08-14-cancer-rates_N.htm

You can read the original article's abstract at the Cancer Research journal's site - you will have to go through your local public or medical library to get a copy of the full-text article (interlibrary loan fees may apply):
The Decline in U.S. Cancer Mortality in People Born Since 1925
http://cancerres.aacrjournals.org/cgi/content/short/69/16/6500

Friday, August 14, 2009

The Soul Seat - gotta get one

If you are sitting at your computer all uncomfortable, have I got the cure for you.
I happen to know the creator of the Soul Seat - a chair designed by Pack Mathews, in Columbia, Missouri: http://www.columbiamissourian.com/stories/2009/08/14/local-man-fixing-problems-chairs-one-soul-seat-time/
One of these wonderful seats may be heading to Omaha real soon - I need to get something else to use when working on the computer, and this looks as if it will do the trick. At $350, it is a bargain, especially if it helps me be more productive! Congratulations, Pack!
If you are looking to add a Soul Seat or two to your household, you can contact him through the Soul Seat website http://mysoulseat.com/home.html .
I need to start a blog roll on the right side for the creative folks that I now know: Jeanne Sather's beautiful Charmed Bracelets http://charmedbracelets.net/, Korean Cuisine's wonderful cooking blog http://korean-cuisine.blogspot.com/, and Pack Mathews' website http://mysoulseat.com/home.html that he has for his great Soul Seat. If you hear of anyone else creating things, just let me know - I will post them here!

Still casting a shadow

Lots of things have been happening around me as I continue to cast a shadow. Son was recently robbed at cocked gunpoint at work (he is doing ok); daughter is entering her freshman year at college (and asking for more money); family are all doing their things as they generally do; and Lucky the dog is practicing to be a cranky elder while remaining a two-year old at heart. Sending out end of summer good wishes to all - we will be knee-deep in snow before we know it.

Saturday, August 08, 2009

Adenoid Cystic Carcinoma research article

Just saw this article again, published April 1, 2009, and thought you might want to know about it:
Volker, H; Scheich, M; Berndt, A; et al. Expression of p-AKT characterizes adenoid cystic carcinomas of head and neck with a higher risk for tumor relapse. Diagnostic Pathology 2009, 4:18 http://www.diagnosticpathology.org/content/4/1/18 .
This is an open access journal, so you can read the full text. The scientists in Wurzburg, Germany studied tumor specimens from 29 patients to do this research. I like this understated sentence in the Background section: "The identification of tumors with a higher relapse risk seems to be interesting." Ya think?! Guess that is the 'distancing language' of the scientists, who must find it hard to work on such tough stuff day after day.
It would be nice to be able to know if my tumor was one that tested high for relapse, local or distant, but how useful is the knowledge? Not sure what they would do with that knowledge at this time, since it can take years for the cancer to grow back locally or in some distant region.
The collection of references on this article could be additional sources of reading for you or your health professional. This review article might be a good place to start for your family physician if they are not up on treatment of salivary gland cancers, for example: http://www.ncbi.nlm.nih.gov/pubmed/18402531. Remember that you can order full-text articles for a fee through most libraries listed at this directory in MedlinePlus: http://www.nlm.nih.gov/medlineplus/libraries.html

Tuesday, August 04, 2009

Uneventful head/neck visit - now on yearly schedule

I visited the head/neck surgeon that has been following me since the fall of 2006 after my initial surgery and radiation, and he proclaimed me ready for annual visits from now on. Yay! (I have been seeing them every 4 months.) Nothing much going on in the head; the places that are sensitive, are still so; the places that hurt like crap, still do; and he wasn't concerned with the voice since that was first followed by the ENT down the hall, but did give me sympathy about how long it is taking to heal. His resident gave me a right going over, exam-wise. I figure the most good that can come out of all this crap - cancer, treatment, changing of one's life habits - is to educate others on it, so I pretty much demand that residents and students are to be present and participate, if they are on that particular rotation. They need to see first-hand the weirdness of an ear canal that doesn't produce regular cerumen (ear wax, if I spelled it correctly). They need to manipulate neck muscles that have been radiated and operated on, as they try to determine the status of lymph nodes that may or may not exist in that general area. They need to hear first-hand from a patient a bit about how they are coping and doing since the diagnosis and treatment of cancer. Learning by doing is about the best thing we have going for the health care profession, and I haven't seen a simulated patient yet that can offer what this cheeky librarian can. Looking forward to my visit next August!

Wednesday, July 29, 2009

Pitting Cancer Support Organizations Against Each Other-Really?

I received an email yesterday from the communications manager of the Oral Cancer Foundation, asking for me to review the OCF on a website, so they would have a better chance to win the Cancer Fighters Award. Deadline is Friday for the reviews. Each review is counted as a vote on the site, and the organizations with the most positive reviews win the title of Cancer Fighter. I won't include the email message here - it has one of those disclaimers at the bottom that says the message is only intende for me, blah, blah. But I will name the site that is causing our great support organization to yank its members' tails and demand their participation: GreatNonprofits http://greatnonprofits.org . I checked out the site, and saw that they have already pitted the Religious LGBTQ groups against each other for the Pride Choice Awards. Another contest for the Green Choice Awards resulted in their first list of Best Environmental Nonprofits. Okaaaay. To my librarian side, the lists are just one hair above meaningless - results of those that took the bait and wrote a message on a website, with no way for the reader to know if the reviewer truly exists, or what the 'positive review' really means in the scheme of things, or how the review should lead the reader to be more likely to donate money to the non-profit. Our library could run one of these schemes: we could ask all of our health professionals (nurses, physician assistants, radiology techs, cardiologists, endocrinologists, family physicians, neurosurgeons, oncologists, healthcare administrators, billing specialists, security officers, environmental services, maintenance, other librarians - you get the picture, and the list is way too big and varied for this rant, and probably equals in percentages the number of cancer support groups for the MANY types of cancer) for their vote/opinion on what is the best information resource that helps them get their job done. The number of users is finite, and is not equal across the different professional groups - just like the number of cancer survivors/caregivers that participate in each of the cancer support groups. In our library, I would imagine that the resources for students would get the highest number of votes - we have many more students than professionals, just like most educational institutions. And security would be one of the smallest groups represented, even if 100% of the department voted. Depending on how well the chains are rattled in various cancer groups for the GreatNonprofits contest, I can bet that some of the top "Cancer Fighters" will include lung, colon, prostate, and breast cancer , with oral cancer not even making the top 10 - except that we in the oral cancer section of the world do tend to be more likely to toss our opinion around at times, and might vote more.
Ahem - back to my post.
I am not a marketing professional, but I play one at work, where I have been assigned to get the word out about our library and services, just as the communications officers get the word out about the cancer support groups, and websites get the word out about their content - all in order to get more visitors/customers. I have a problem when a website's content only exists due to coercion or contests or for money - it should be freely given, unbiased, without implying that if the person's nonprofit is not chosen with the most positive reviews, it is assumed to be lacking that special something. People needing consumer health information and cancer support shouldn't have to worry about their main sources of information support winning beauty pageants - they need to know the information on the forums is from actual people who actually experienced similar treatments and outcomes. (Note - sometimes, one needs to assume from the start that this is not the case until proven otherwise - after all, On the Internet, Nobody Knows You're a Dog). I am not totally knocking the GreatNonprofits website for their use of social media for their awareness campaign. I am knocking them for leading their viewers to believe that the reviews they find have more value to the viewers' useage and donation choices than the reviews really do. On their About Us page, they compare their reviews to restaurant review sites and the reviews found on Amazon. I understand when I read restaurant reviews that they could have been written by a competitor, or a brother-in-law (hopefully being negative and positive in nature, respectively) or a cranky customer that keeps coming in so they can write another bad review. As for the reviews on Amazon, well - in the past, some have been discovered to have been paid for (and how many weren't discovered?).
Bottom line: be an Internet skeptic with reviews as well as other activities you do on the 'Net. Research the support and information resources available to you, hopefully with the assistance of a librarian. Evaluate the support and information you receive from the website and the forums. It is so hard to do when a person is desperate for any information in the crisis situation of being newly diagnosed or a loved one diagnosed with mets, but a part of you must remain skeptical of the information you locate until you can check it over with your health care professional. The Oral Cancer Foundation had information on it that saved me during treatment three years ago, and still is a high quality site. Their site has excellent content, managed forums, and are worthy of donations on their own merit. They do not need to participate at all in the GreatNonprofits hoopla to get noticed, in my opinion.
If you are looking to donate your hard-earned dollars, let your local librarian know if you really want to scope out a good nonprofit - we can help you get to the source of unbiased ratings/reviews.

Tuesday, July 28, 2009

video On Being An Oncologist

As cancer bloggers, we talk about our oncologists in various ways - positive, negative, as a team member in our care, as a barrier to the care we think we should be receiving - but rarely have our oncologists as participating discussion members. I found this great video that presents the oncologist's point of view through actors William Hurt and Megan Cole on the MD Anderson site. Designed for discussion and reflection by health professionals, the video grew out of a focus group project that gathered comments from the professionals at MD Anderson. In these days of health reform discussion, remembering that our caregivers are humans with lives and talents and skills and fatigue and fears and concerns and barriers of their own might be pretty useful to keep in mind. Thanks to all of my health professional caregivers - I salute you for your work you do despite your frustrations and barriers of the system/time available/limitations posed by the disease process I face.

Monday, July 27, 2009

My voice update

I am teaching with the Chattervox now, and loving every minute of it, since I don't have to force the voice for 2 hours straight to go over the fan sound of 14 computers. I joke with the students that they can expect me to interrupt my lecture with, "But wait, there's more!" occasionally. I just have to remember not to go evangelical on them when I see eyes glazing over (the classes this month are after lunch - oh, man) - the Chattervox amplifies my voice very well, so if I get strident, they lose their hearing (grin!).
A friend and reader of this blog suggested that I could use this in a pinch. I think I may wear that to the next head & neck surgeon visit, just to keep them on their toes. Either that, or Darth Vader's helmet.
Still can't sing or hum, which is frustrating in the Cheekymobile and in the shower, but probably better for harmony in the home (family says I couldn't sing before...). Not sure if I ever will be able to make music outside of whistling - guess that is why the Marx brother did that.

Hope everyone gets to attend a family reunion this summer

Just returned from Minnesota, where we attended my dear husband's family reunion up in Plymouth. Really nice time - got to see many of the branches of the family tree, and see where we all fit together in the scheme of things. The most fun was getting folks to hold still for the family shots! The kids that attended seemed to have a good time with the playing and the attention from doting grandparents. The food was wonderful - great cooks in his family. And he and I had a great time on the drive up and back - it is so nice to have a best friend on a trip like that. We had so much fun, we are planning another trip up to the Ikea store to buy bathroom fixtures that we liked. We used to shop at the store near us in Germany 20 years ago. I keep emailing the company that they need to build a store down here, but they just reply politely that Minnesota is as close as they are getting to Nebraska. Ah well - the visit with family will make it all worth it.

Tuesday, July 21, 2009

New Adenoid Cystic Carcinoma blog

I found this while searching for something else yesterday (the story of my life as a librarian, actually). Sherry Rogers was recently diagnosed with Adenoid Cystic Carcinoma in her eye orbit, and has created a Caring Bridge journal: http://www.caringbridge.org/visit/sherryrogers/journal .
Please be thinking about Sherry and her family - one of her young sons was very recently diagnosed with a kidney tumor, and she as a cancer patient is now caring for her child, another cancer patient. But based on the supportive messages of love and prayers attached to her journal, they are in great hands.

Parotid tumor in the news

Adam Yauch, member of the Beastie Boys, announced that he has been diagnosed with a tumor in his parotid: http://www.variety.com/article/VR1118006206.html?categoryid=13&cs=1&ref=bd_film .
He is anticipating surgery and radiation treatment. I wish him the best as he heads toward healing.

Friday, July 17, 2009

Cure for Radiation Sickness Found?

That is the title of a news article on Ynet.com News Forum:

Found it first on BoingBoing... Can't find anything else about it, but if it is true, THIS IS AMAZING!! I will be watching the Cleveland BioLabs site ( http://www.cbiolabs.com/) and Google News to see if there is any update/verification.

Tuesday, July 14, 2009

Blogger's post about health insurance

Saw this on "After Cancer, Now What":
How I lost my Health Insurance At the Hairstylist's
http://www.progressivefox.com/?p=721

Gives some great talking points about health insurance and how tenuous it is. There are no perfect programs - in the UK, I hear of ACC patients waiting way past the 6 week window for radiation treatment (at that point, what's the point?), and trouble if an expensive drug is needed (generally, not going to happen). Canada has trouble with its primary care system - hard to get a primary care doc if you aren't sick enough - and if something is needed right away, say cardiac treatment or a NICU for a baby, you may have to travel across the border for care in Montana or another northern state. In Germany, I watched an employee struggle with his dad's diabetes care, ultimately ending in a leg amputation due to the long que for preventive care, and then no nursing care beds, so he had to keep dad on his couch in his house for months. Here, I know I am not insurable except maybe by a place that has a large group policy. I am luckier than most - my care did not require chemo, and probably won't if the cancer comes back. Radiation costs were about $90k before the insurance negotiated it down - not as bad as a transplant, say, or some chemo treatments that hit 6 and 7 figures really fast. I am not sure what they are discussing here for our options, but dang it, we need to have some. At the same time, I believe that health insurance should be mandatory - yep, all you 21 year old immortals, you should be in the system. (That was the biggest gripe in Germany I heard - the younger workers didn't like having to be paying into the system when they didn't see any payback-yet.) I know of a mid-twenties person who just had a really bad accident - could have used health insurance. I know of a 21 year old with asthma - has chosen not to get health insurance. Go figure. Get responsible, USA and all citizens - take care of your self and your family, and talk to your congresspeople. Yeah, whatever they come up with is going to be different than now, but if you have 'great insurance' and don't want anyone to mess with it, just reread the post above - it may not be so great if you actually have to use it once.

Sunday, July 12, 2009

Update on reduced-volume Cheeky

I am not silent anymore, but still don't have the voice I used to (or a lot of other things, if we want to get right down to it! Ahem.) Our IT librarian came by on Friday with a great contraption that one of his teaching relatives uses - a headset/amplifier set. Chattervox is the brand name of the model he is buying for me. I have seen tour guides and carnies/booth babes use these, I just never thought I would be wearing one. So I guess I will be giving Vince a run for his money as I 'sell' the positive points of PubMed.gov and access to information as a 'good thing' to health professionals and students.

Another cancer blog with good information

I just had a comment from the author of this great list of cancer blog links, saying he was adding the Cheeky Librarian to his list:
http://beingcancer.net/cancer-blog-links/

from his About page:
"Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle."

Hmmmm... a medical librarian and a cancer nurse. I just bet that we could get up to something if we put our heads together! Thanks for the link, Dennis. I have added you to my blog roll, too.

Mommy bloggers are big - where are cancer bloggers?

I saw this BizReport from May, after hitting a search brought up by this morning's GMA story on Mommy Bloggers making money:
Nielsen: Mommy Bloggers - the ones to watch: http://www.bizreport.com/2009/05/nielsen_mommy_bloggers_-_the_ones_to_watch.html

Please listen up, Nielsen. Of the cancer blogs I follow, I would vote that Jeanne Sather's The Assertive Cancer Patient http://assertivepatient.com , and Kate Burton's After Cancer, Now What? http://www.aftercancernowwhat.com/ , are two blogs that I read the most. I am so glad that I can follow other folks' stories through their blogs - Dee's Updates, Korean Cuisine, Cyndi's A Day in a Life With Life, Molly's Musings/Brawley's Boobs-WHATEVER!, and the others in the list I have on the right side of this page. Yes, I still link to folks that have died, since their recording of their cancer travels can be of help to others on our shared road. Not much advertising on most of these blogs. Some bloggers have gone with topical advertising, or like Jeanne, have created another site that they conduct business through: Charmed Bracelets http://charmedbracelets.net/, as well as accept donations to support the blogger. I don't know how acceptable sponsored blogs are in Mommy-land, but as a cancer patient and a medical librarian, I take any sponsorship on a health-related blog with a grain of salt. I have had one episode on this blog where I received something to review, with the understanding that the review would be my own to write - no other support or sponsorship has been received for the other things I recommend for cancer treatment coping - Optimum Nutrition Gold Standard Whey as a protein drink, Coolibar as a source of sun protection clothing, Biotene as a toothpaste for low-saliva, your local public or medical library for good sources of information... My blog is just to let folks know what worked/works/didn't work for me, so they will have some additional items in their decision tool-box.

So Nielsen, you might want to run a survey of influential cancer bloggers. Please just remember to go for the rare cancers as well as those that impact larger portions of the population - thanks. As far as influence, I wager that those of us in the rare cancer world may have greater impact in each life we touch - there just isn't a lot of information out there on some topics!

Tuesday, July 07, 2009

Cheeky voice update

I had the first lecture since June 3rd to do today - I think I did ok, but it wasn't my best effort. Voice is still gravelly, and I have to force it to get the sound out. People I work with (and live with!) still feel free to tell me to stop talking. (Miss Manners, I think I have found a method for folks to be able to tell another to shut up in polite society-just tie it to a medical condition.) Still wish there was a crutch for a voice in trouble. I signed up to do 5 2-hour lectures between now and the end of the month, so things had better get better FAST.
You know, I have learned to live with the various pains that have come up (chest area, abdomen, head of course) - no sweat, and I know others face much more, pain-wise, and function well. But what is the best way to cope with losing voice? Let me know if you think of anything. Since communication is key to my job (despite what you may think of librarians and professors, we do talk - a lot!), this new limitation in my life is something that keeps me up at night a bit.

Monday, July 06, 2009

This could be the best obituary ever

Nancy Lee Hixson, of Danville, OH - April 17, 1944 - June 30, 2009

I hope it isn't wrong to say this - I really enjoyed reading this obituary, but really sad that I didn't get to meet Ms. Hixson in person. A friend sent this link to me from Twitter, so her sphere of influence continues to spread. Here's to you and the wonderful life you led, Ms. Hixson.

Wednesday, July 01, 2009

Peter Tork talks about his ACC, in his own words

On the Washington Post site:
Peter Tork's Cancer, In His Own Words
I for one wish him a great recovery, and many years ahead of making beautiful music!

More on letting your loved ones know your passwords after you die

I saw this post on BoingBoing: How to incorporate escrow of your keys and passwords into your estate plan - http://www.boingboing.net/2009/07/01/how-to-incorporate-e.html
I know I am much more concerned that my loved ones know where to find any money coming to them, and how I wish my belongings to be distributed (I will let you just start wondering about who gets what!), but allowing them entry into my digital life is also important to me. Please leave a comment if you have figured out how you are doing it - I am really interested in what process to take. And if you are an estate lawyer out there that is even slightly "techie", here is a new service you can start offering. If they can deliver a letter decades later at a specific moment in a thunderstorm (ok, it was in 'Back to the Future Part 3', but still), someone should be able to set up a process to simultaneously update and guard passwords and still hand them out at the time they are needed.

Sunday, June 28, 2009

Items on eBay support ACCRF

There is currently an exciting series of bids over on eBay for some items connected with Peter Tork, with the proceeds going to support the efforts of the Adenoid Cystic Carcinoma Research Foundation (AACRF). It might be fun to follow the bidding wars - the signed purple tie is already up to $420, and the red bra has reached $51. (I will have to ask my archivist buddies how one properly displays a bra and still protect it historically.) Peter Tork was recently diagnosed with Adenoid Cystic Carcinoma, and has recently been going through radiation treatment. The eBay items were donated by his fans, but he has been fundraising himself through a wristband he sells on his website: Hope On.
If you wish to donate directly to the AACRF, here is their page:
http://www.accrf.org/html/donations.php . The research on our rare cancer won't happen without private donations. I thank everyone that has donated time or money towards finding the key to unlocking the mysteries of this critter that lived in my head and (probably) travels my nerves as I type this. (And I don't even like ticks - ew!)

Thursday, June 25, 2009

Happiness

I just saw this post on Zen Habits, and wanted to share it here:
All the Advice on Happiness You'll Ever Need in One Post
http://zenhabits.net/2009/06/all-the-advice-on-happiness-youll-ever-need-in-one-post/

I wish you much happiness!

Wednesday, June 24, 2009

Bit of an anti-climax, sorry

I went to the ENT clinic, and came out still on voice rest. They did the scope (not so bad: stuff sprayed in my throat - it is probably good that I can't taste, then a camera shoved in there recording cord movement while I tried to say 'eeeee'), and found some blisters on the cords. They surmise the blisters are from a virus, and all I need is more time for the voice to come back. If I am still like this in a week, I will go back to them for further follow-up. The only thing different about the blisters (and you KNEW I would have something different): they aren't right across from each other, like they are usually found - they are kind of catty corner from each other.
The take-aways from all this - the hoarseness is NOT from nerve palsy caused by radiation therapy; the hoarseness is NOT from cancer coming back; and my coworkers and family are still going to have to deal with a silent Cheeky for a while. We met this morning and divied up the upcoming teaching events so other librarians will be taking them. I am heading out for that Harpo Marx outfit now, very happy that I don't have any further medical inspections on my chassis...
Thank you so much for your support, your funny jokes, your reading of this blog during my waiting time. I will try to find something more entertaining for you to read on your next visit.

Tuesday, June 23, 2009

Update: one tired-of-not-speaking Cheeky


And cranky - very cranky. At one point over the weekend, I was mouthing things to the dear husband for him to repeat in full voice to a table full of relatives, and he was not doing what I was asking. Lucky for him, I have taken a vow to not kill a human during this calendar year. I had hoped that after feeling so powerless when I was first diagnosed with cancer and then the 'pearl' in my skull, that I would not feel that way for a while longer - hopefully, decades. (Or at least until that first IRS audit.) Watching him look at me and shake his head that he was not going to say what I wanted to say (maybe it didn't fit in the conversation; maybe he had other things he wanted to interject into the fray; maybe I was talking crazy in his viewpoint - not sure which of those or other things apply to this situation), I realized that powerless is with me again, and that it would be me and a notepad full-time if I don't get these vocal cords fixed/healed/replaced with bionic parts. Sure, I should have taken a notepad and large Sharpie to conduct my own conversations (and maybe written the messages on dear husband's forehead). Next time, I will bring along my own Harpo Marx horn, and really make a scene. Trying to figure out how to fit one of those into my next string of lectures, set for the end of this month...
Don't set up any voodoo dolls with the image of Mr. Cheeky - to him, it wasn't that big of a deal, I am sure. (I may duct tape his lips sometime soon and show him a bit of how I felt - not sure, yet.) But if I could have had Firestarter's powers for just 10 seconds, the entire table full of relatives would have gone up in flames. Not wishing any real bad things on family - just a slight toasting. It was bad enough that we were meeting at a barbeque place for lunch - and one of my favorite from 20 years ago - leaving me to have ice water as the only thing on my menu of choice. (Do they not remember that I have not had this type of food for the past 3 years? Or maybe they figure I was just being picky. I know - let it roll off, no big deal, my problem and no one else's.) I should have just skipped the whole thing, but there was a new date in one of our relative's life, and we were asked to meet them. I am REAL certain that I made a wonderful impression - ahem. I can hear the conversation as they drive home: "No, it isn't hereditary, and besides, she is only my sister by marriage. She had that brain surgery a couple of years ago - it might have caused a stroke is what we're thinkin'. " Next time, I will stay home and send my regrets. Realizing that staying home was my only true choice also brings to the fore the possibility that I may be staying home more and more, if my limitations increase. I worked so very hard after both of my previous surgeries to return to whatever level of normal that I could do and still be a taxpayer. Right now, I don't know where I can put my stubbornness and willpower, except for the not-talking part. I go back to work in my silent office tomorrow, and get strobe-scoped in the afternoon. I will post any updates here.

Adenoid Cystic Carcinoma in the news

Many of us with cancer will find this old news - we have spent years keeping our families and friends up to date with treatment news through social networking. Still, these news stories/blog posts have come to light, showing how Peter Tork is using his fan base to spread the word about Adenoid Cystic Carcinoma, as well as cancer in general. His work, hopefully, is increasing funding raised by ACCRF for the study of ACC. Some recent news articles/blogs about what has been going on:

A former Monkee with Cancer -
http://voices.washingtonpost.com/checkup/2009/06/a_former_monkee_with_cancer.html

Living in the bonus round (blog): Peter Tork, Social Networking and Cancer
http://www.facebook.com/ext/share.php?sid=92061780668&h=pK_R5&u=tU9Jg&ref=mf

Former Monkees star uses social networking to spread word on his condition
http://thephoenix.com/BLOGS/phlog/archive/2009/06/23/former-monkees-star-uses-social-networking-to-spread-word-on-his-condition.aspx

He has a site on Facebook, http://www.facebook.com/peter.tork (note: the Phoenix article above gives a fan site link on Facebook instead)

Other news:
Research published in the journal, Diagnostic Pathology 2009, 4:18 -
Expression of p-AKT characterizes adenoid cystic carcinomas of head and neck with a higher risk for tumor relapses. Researchers are interested in trying to id tumors with higher relapse risk, something all of us that have worn the tumors are REALLY interested in. Their findings on research conducted on lab specimens from 29 patients are published this article. As soon as the article is included in http://pubmed.gov, I will include the PMID in this message. From the abstract in the press release: "Our findings demonstrate a possible background for therapeutic approaches targeting the inhibition of PI3K/AKT pathway."

Friday, June 19, 2009

Cheeky still silent (well, almost)

I visited the ENT clinic this morning to get my vocal cords looked at, and had a surprise - to see the cords, they go through the NOSE. Yep, that was a thrilling experience. Anyway, they found nodules on the cords, which explains why my voice is so breathy and broken. I go back in next week for another scan that involves a strobe light in order to better see the actual activity of the cords. (If you are interested in more information regarding voice disorders, there is a great site at MedlinePlus: http://www.nlm.nih.gov/medlineplus/voicedisorders.html)

I am still on complete voice rest, but the doctor/professor that I saw says she doubts that I will be able to maintain that (gee, they DO know me at my university!). I am going to do my level best to remain silent. It doesn't do much good to open my mouth to speak anyway, since people generally ask me to repeat myself.

For me, not being able to answer any questions or offer information is quite painful - it is like I lost another sense. If I am supposed to be learning a big life lesson here, I hope it gets clear pretty quickly. (Yeah, who am I that I am asking the life lesson to be a fast one?!)

Up in the wee hours, listening to the thunderstorm

Nebraska is famous for its summer storms. The one that is approaching Omaha right now is only supposed to have high winds, hail, and rain - no tornadoes, so I may be losing power any minute. Right now, the rain is falling, the TV is on to the local station's weather crew giving updates, and the family is snoring - all is right in the world, despite a heat index of 86 degrees outside (cozy inside with our cool "bought air", as the heat pump is doing its thing quite well, actually!). Where ever you are, I hope you also have this sense of peace and contentment in your life, cozy while the storms are raging outside.

If you are looking for a great weather site that gives real-time radar, try Intellicast. Here is the link for the radar loop for my area, but you can adjust it to view your area instead:
http://www.intellicast.com/National/Radar/Current.aspx?location=USNE0353&animate=true
This is also a useful site to see where snow/ice conditions are before you head out on trips in the cold months.

How many blogs can a blogger blog?

The question came up in discussion among other cancer bloggers about how many blogs we each maintained, and if there is a "too many" number. (You can see more of the discussion on The Assertive Cancer Patient blog.)I have 16 blogs that are on my Blogger dashboard, because blogs are really great tools for librarians. My librarian blog shows up on this directory with a ton of other great librarian blogs (most having more traffic than mine, but few older than mine):
http://www.dmoz.org/Reference/Libraries/Library_and_Information_Science/Weblogs/

Librarians have always thought in blog format, in my opinion. Not necessarily as a journal tool, but as a place to record useful bits of information to share with patrons without having to go through a webmaster or committee to design a page on the net. Of my 16, 4 are fairly frequently updated, and two of those are my personal ones (librarian-related and my cancer blog). Two others are pretty much defunct, but kept on my dashboard as a record. Another one was done two years in a row for a national library conference roundtable - no idea when that one may come in handy again. One is a project with another cancer blogger that has not been fleshed out yet - left on the dashboard in order to keep the domain name current. Another 7 are blogs that I created and maintain for undergraduate workshops at our university that link to resources available to anyone on the web, since the visiting students don't have password access to our library's digital collections. I refresh the undergraduate blogs once a year, but check them once a month to make sure the links (mostly to government sources) are live, in case last year's students are still using the blog as a jumping off point for their current research.
Finally, one was created simply as a bibliography for "After Our War", a 2007 UNMC CE course designed for Nebraska physicians and mental health professionals.

Depending on what you are blogging about, I don't think you can have too many going. If I expected to add to or edit all 16 in one week, that would be way too much. But I have only 4 that need frequent updating - and since half of those are personal, that is a reachable goal.

A few of my blogs that might be of interest:
http://cheekylibrarian.blogspot.com
http://libeducation.blogspot.com
http://golocalne.blogspot.com
http://ccresources.blogspot.com
http://afterourwar.blogspot.com/

Thursday, June 18, 2009

Update and a food craving out of the mists of time

First, I am remaining positive (or floating on the river of denial) that my voice is better this morning since the addition of steroids yesterday. "Better" is just incremental, but I will take it and remain silent for the rest of the day, including the hair appointment I have tonight (have already written up my note cards for that visit.) If the voice really isn't better, I go to the ENT for a scoping to see what they can see. Wish I could mail that image in - at least I still have a gag reflex, but I don't really like to prove it.

On a completely different topic - food: I haven't had much of an appetite lately, but for some reason this morning, I am craving all the stuff that I used to love B.R. (before radiation in 2006). Can steroids work that fast on a person? If so, this is really not fun - a glass of protein drink doesn't fix the cravings, that's for sure. I got to thinking about some of the first Chinese food I had when I was growing up in Missouri, where they have their own brand of Cashew Chicken that I haven't run into anywhere else in the world. (The Cashew Chicken, like Brad Pitt, is from Springfield, MO) I went out hunting that topic down just now, and ran into a recent story in the NYT Travel section: United Tastes-Missouri Chinese - Two Cultures Claim This Chicken http://travel.nytimes.com/2009/03/11/dining/11cashew.html
(My apologies for anyone that finds this unique recipe an affront to what they know to be good Chinese food. I recommend that you go to Missouri and try it sometime!) Man, what I would give for some of that brown sauce about now and have it taste good... the ol' palate just wouldn't do it justice, though.

Tuesday, June 16, 2009

Brad Pitt's family donates to Missouri hospital's cancer ward

Brad Pitt's family is donating $1,000,000 to St. John's Hospital in Springfield, MO to help open a new pediatric cancer wing in honor of their mom, Jane Pitt. The Pitts grew up in Springfield, MO, making this a natural thing to do to honor their mom's "passion for children's issues".

http://news.bbc.co.uk/2/hi/entertainment/8102381.stm

In the interest of 'six degrees of separation", I am a Missourian by birth, and used to drive a truck through Springfield, MO in the 80's. It just could be that a young boy played out in his yard with his siblings and saw my truck drive by, which somehow inspired him to become an actor...hey, it could have happened that way! (Ok, probably not - he's only a couple of years younger than I am.) Seriously, I give tours to young students from the 4th grade on up at our university, and we talk about the brass plaques on the walls and doors, and all the buildings named after someone. It is a great thing to give back to your community once you find yourself having 'arrived' in your profession. Only half-joking, I usually say that the first million is yours; the second million is for you to give back to the place that supported your growth into the person you became, as you see fit. Congratulations to the Pitts giving back in such a meaningful way to the community that supported their growth.

Breast cancer survivor has ACC in her family story

This news story about Long Island breast cancer survivors tells of one woman, Diane Tropea Greene, who has breast cancer, her mother, sister and brother died of breast cancer, and another brother died of adenoid cystic carcinoma -

http://www.newsday.com/services/newspaper/printedition/tuesday/health/ny-licanc1512873370jun14,0,6385440.story

Ms. Greene has written a book that examines her family's cancer experiences: Apron Strings: Inheriting Courage, Wisdom and...Breast Cancer

Cheeky one is still croaking

I am still searching for a voice. Stopped by the head/neck guys to see if they would want to see me yet, but they don't see a person until they are having trouble with laryngitis for at least a month. Since my job as a college professor requires some speech (actually, 90 percent of the time, I am supposed to be talking), this has had a great impact on my job and interactions with my colleagues and students.

With all of the cancer treatment for my particular brand of adenoid cystic carcinoma, I have been pretty lucky to not have experienced trouble with my voice before. Not figuring I am experiencing any now - probably just a virus (according to what every health professional has told me so far).

A fellow oral cancer patient is quoted in a research article I read recently about their loss of voice during treatment:
"Ok, I'm not Oscar Wilde or Moss Hart, but to have a riposte or a description or a question sitting there on my lips waiting to be shot into conversational melee and not be able to shoot it is crippling..." (Crossley ML. 'Let me explain': narrative emplotment and one patient's experience of oral cancer. Soc Sci Med. 2003 Feb;56(3):439-48) Shooting blanks here myself - maybe time or the family practice doc I see tomorrow will help things move along.

What did the big bad wolf eat so his voice would be smooth and not scare Little Red Riding Hood? Chalk? Just my luck, our university no longer uses chalkboards (grin!).

Sunday, June 14, 2009

Rationing of medical scans has begun due to shortage of medical isotopes

I just saw this Reuters story: US Hospitals Rationing Nuclear Imaging Tests http://www.reuters.com/article/healthNews/idUSTRE55B3NZ20090612

I figure ACC/AdCC (both abbreviations are used to mean Adenoid Cystic Carcinoma) patients are among the most scanned of cancer patients - if you have scans coming up, you may want to check with your doctor to see if an alternative has been selected.
The article says that cancer patients will be moved over to positron emission tomography (PET) scans (PET scans use different isotopes). PET scans are not the best test to see if our particular cancer has moved on, since it is a slow cancer, and tumors can exist that won't 'feed' on the radioactive sugar and thus don't light up in the scan.
Here's hoping that they hurry up and convert that University of Missouri research reactor.

Friday, June 12, 2009

Cattlemen's Ball 2009 - whispers, mink, and tears


Ok, to get rid of any worries that the title of this post may bring - the tears were tears of joy. Now to the rest of the story... (man, I miss you, Paul Harvey)
The 2009 Cattlemen's Ball started for me and my traveling companions with a visit to the Bank of Doniphan, where we met with Angie, our contact for tickets and the vendors. Jeanne Sather (Assertive Cancer Patient) and her wonderful friend Monica rode with me out on Friday morning. It was GREAT to meet Angie and her colleagues that had worked so hard and so long on making the Ball a reality. After meeting with her, she recommended that we have lunch in the Doniphan Cafe & Steak House across the street. Tell you what - if you ever find yourself near Doniphan, which is on the road between Grand Island and Hastings, you need to stop in there for a great meal. I had the vegetable beef soup, and was really sorry that I had to leave the lucious chunks of beef alone in the bowl. The skilled and very busy waitress came over and clucked her tongue at me, asking why I hadn't eaten the beef (folks, it was chunks of prime rib - the good stuff!). I told her an abbreviated version of why I wasn't eating meat anymore, and she understood.
We went on to Grand Island where we were interviewed by a Hastings Tribune reporter. We had a good time, and the story was published on the following Monday. Unfortunately, the story is not free on the web.
A side note - the whispers started Thursday night/Friday morning for me - I lost my voice. So all of these nice people were meeting me with no voice. Wonderful. What a way to make an impression! I alternated sounding like a young boy going through puberty to only speaking in a whisper. Trouble is ongoing - have seen a family medicine professional, head/neck guys are next if it doesn't resolve.
My library director and her husband arrived in time for the evening festivities, and looked wonderful in their outfits, designed especially for the Ball. The three of us - Jeanne, Monica, and I - went out to discover what we could find for supper, and found a wonderful Latino restaurant in downtown Grand Island - Sanchez Plaza Restaurant, Market & Bakery. I was crossing my fingers that I could find something that wasn't too spicy, and was thrilled to find out that the real Latino chefs let you add your own spice. I had a great dinner! We enjoyed it so much, we returned on Saturday before driving back to Omaha. Again, a great place to eat if you find yourself in Grand Island for a stray hour. They feed you up right!
Friday night brought storms as only central Nebraska can get them. Someone told us there was 6 inches of rain - and based on what we saw at the Ball site the next morning, I can believe it. No discouraging words were heard from the Ball volunteers and planners - they, like all the Nebraskans I have known, just picked up and started working on getting things done. They had a couple of 4 wheelers running around, picking up early arrivals at the parking area and taking them across the flooded field to the tents. (Yes, we took advantage of that ride!) Even the interiors of the tents were soaked, but the quick addition of wood shavings/animal bedding soaked up most of the extra moisture. Jeanne set up her booth, I set up the library booth in a different tent, and we met the day. I intended to stay at my booth, but after one kind woman patted my shoulder and said, "It is a good thing you work at the Med Center - they will fix your voice up", I figured I was not getting the message across about our consumer health information services, and rejoined Jeanne. She and I were both set to be in the style show, so we practiced with everyone that morning, then she went for makeup and hair around noon. (I went back and told them that I was now a 2 year old as far as it came to my hair and face, and I wiggle - they sent me on my way, untouched!)
The style show is where the tears and the mink come in. Even practicing, I teared up - all this being done for us cancer survivors really touched me. (And I admit, there was a little bit of anger back there in a corner of my mind that I was even involved in this - still ticked off that cancer showed up, interfering with my game plans.) All ages were in the style show - I followed a very young boy. No one really got into what their particular story was - we didn't have to. Jeanne spoke just before our turn on the catwalk, telling the do's and don'ts of what to say when a friend has cancer. Then we were on! I went out, and saw my director and her husband cheering me on - and about lost it big time right there. She, along with the great folks I work with, ALWAYS cheered me on, even in the darkest days of treatment and when the pearl showed up in my skull and through additional scans last fall. How lucky can one person be to have that kind of support? I hope everyone finds that when they need it! And to see them out there, cheering once more for me - well, that made my year right there. Wearing the mink was something special - made up for all the hospital gowns I have had on over the past 3 years - but the cheers and smiles from my own supporters and those from the community will keep me going for a long time. Hats off to the nearly 500 volunteers that made the Cattlemen's Ball a reality, and to the community members that attended - my whispering cheers are for you!

Sunday, June 07, 2009

Turning to patients for help in the 'war on cancer'

As I have traveled the web since my diagnosis just about 3 years ago, I have learned and heard others say that patients really need to be listened to, and patients with rare conditions should be listened to harder, since they have valuable information to share. I and a professional colleague/dear friend researched expert patient bloggers back in 2007, and found that they have a lot to offer new patients as well as health professionals/researchers, and thus should be considered as information sources by medical librarians. This week, I found a research journal blog post while searching for news on Adenoid Cystic Carcinoma that seems to agree with the idea that patients have much to offer those conducting cancer research, particularly rare cancer research. In HemOnc Today, Bill Wood, MD talks about a recent editorial in the Journal of Clinical Oncology by 2005 Pulitzer Prize winner Amy Dockser Marcus: http://www.hemonctoday.com/comments.aspx?rid=40553. From Dr. Wood's post: "Ms. Marcus argues effectively that the direct involvement of patient advocates in medical research represents a novel and promising mechanism for researching rare diseases." Ms. Marcus included the Adenoid Cystic Carcinoma Research Foundation in her article, a wonderful foundation begun by a family when the mom was diagnosed with ACC: http://www.accrf.org/.
Dr. Wood sees a larger role for patient advocates in ALL cancer research, not just rare cancer. The only question I have is: are we that have the cancer, rare or otherwise, considered patient advocates, or are the two authors talking about inserting another level of humans in the research process between the patients and researchers? (For the purpose of this post, I am assuming that we that wear the scars are the advocates they are discussing.) So the good news for all of you out there that are wondering if the researchers are listening to us, the rare cancer patients - they just might start doing more of it. It appears that my idea of hosting a cruise and inviting researchers to join the hundreds or thousand(s?) of us that are currently on the surface of this blue planet might just be a bit closer to becoming reality... let me know if you are up to helping me plan it!
Here is a link to the original editorial in the Journal of Clinical Oncology: To make progress in rare cancers, patients must lead the way . You should be able to request a copy through your nearest library, or you can purchase it online for $22 from the journal itself.
Amy Dockser Marcus is a Wall Street Journal reporter that has written before on rare cancer issues. Here is a list of articles she wrote in 2004: http://online.wsj.com/public/resources/documents/SB111263120089597221.htm . She received an Investigator Award in Health Policy Research from the Robert Wood Johnson Foundation in 2006, http://www.investigatorawards.org/investigators/default.asp?l=3&i=1898, for "Improving the Cancer Care Experience for Rare Cancer Survivors"
 
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