Great - another stigma for head and neck cancer fighters

When I was diagnosed with a 'head and neck cancer', more people than I thought would have asked me if it was due to any history of smoking - "you must have smoked a lot sometime". Nope, never even lit a match to smoke. Alcohol? "I bet you used to drink, and that brought it on." Nope, pretty much not a drinker. "Well, why did you get it then?", they would ask. (You understand, these were not my friends, just people that ran into my life story as they passed by.) "Not a clue" was my response. Adenoid Cystic Carcinoma has neither been shown to be caused by environment nor by heredity - they are still hunting for the cause as well as a cure.
So, after living through that, guess what news came out with this week:
Rise in Some Head and Neck Cancers Tied to Oral Sex: Study http://health.usnews.com/health-news/family-health/cancer/articles/2011/01/25/rise-in-some-head-and-neck-cancers-tied-to-oral-sex-study?PageNr=1
Can't wait for THOSE questions (or even better, those knowing looks!) to come forward from nosy humans. Please understand - the study is referring to cancers testing positive for HPV, that same virus that the Gardasil vaccine is supposed to ward off. They theorize that multiple sex partners leads to a higher chance of specific cancers.
Bring on the assumptions and the knowing looks. Maybe I will strengthen the stereotype of the sexy librarian, all by myself. I might even come up with some ready stories as comebacks - "Well, there was that one weekend of Steve and Fred in the treehouse...", then walk away, leaving the nosy ones just wondering more. Anyway, I must give the high-5 to one of the physicians interviewed in the article - Dr. Lydiatt is from my very own University of Nebraska Medical Center. (And a very great surgeon.)
People used to not disclose that they had cancer. News like this may make them keep it quiet again. Lung cancer can happen when a person doesn't smoke a bit. Head and neck cancer can happen out of the blue, for no reason at all. Please don't look at the human wearing the cancer tumor scar and immediately blame them or their lifestyle for bringing the disease upon them (or, as someone once said, "You have received cancer of the mouth due to your sins against god". Yeah, that was a good day.) And if you are a patient, please don't berate yourself for having done or thought something to "bring it on". You have the hardest job of all: healing - pay attention to today.

Adenoid Cystic Carcinoma in the news

From Portsmouth, NH - Samuel Hyun, a math teacher, passed away due to ACC on January 16. He was 34. More on his story can be read here: Teacher Inspired Students  http://www.seacoastonline.com/articles/20110125-NEWS-101250307

Diagnostic Imaging has an article from a Penn State resident on ACC of the breast: http://www.diagnosticimaging.com/breast/content/article/113619/1781622
I am not sure if Diagnostic Imaging is a peer -reviewed site or not (more about the author who is also the blog owner? here http://www.diagnosticimaging.com/radblog/display/article/113619/1779566 ), but I do take issue with these sentences in the article: "ACC has an excellent prognosis with few reports of metastatic disease. It is a slow growing lesion with a low recurrence rate. Long term survival rates are high." (They cite this article for that  'fact': Leeming R, Jenkins M, Mendelsohn G. Adenoid cystic carcinoma of the breast.Archives of Surgery.1992; 127:233-235.) While I wish the author all the best in their educational career, I urgently request that they learn more about ACC before they become a fully trained physician. Please. Speaking as one that wears this disease (different site, of course, hence the name "cheeky"), I would like a better definition of what 'excellent prognosis with few reports of metastatic disease' means exactly to health care professionals. (Possibly the author meant to say "ACC of the breast"?) Because I personally know of way too many ACC humans dealing with 'metastatic disease' .

Good sources of health information

If you are newly diagnosed with a condition, or are searching for information on a condition you have had for a while, please remember that librarians are standing by to assist you. You can locate libraries nearby that are ready to help by going to this MedlinePlus directory site: http://www.nlm.nih.gov/medlineplus/libraries.html. Also, check with your hospital or clinic to see if they have a library attached to them that serves patients' needs (some only serve health professionals, so it pays to ask.)
When you contact the librarian, they will ask you questions to identify your information need. This doesn't mean that you have asked the wrong question, or that they are nosy. Librarians are trained to conduct a 'reference interview', which is designed to identify the right information to give to you in order to successfully answer your question.

20 years since Desert Storm hit

20 years ago this evening, I was at a military spouse meeting, supposedly ready to hear specifics about how the Army notified survivors that their military spouse had died or been captured, and discussions about survivors' benefits. As we sat in the meeting hall at Ft. Sill, OK, someone came in and said, "turn on CNN". Since most of us had small children that had said goodbye to their dads 3 months prior, we weren't a CNN-watching bunch at our homes, generally catching it being forced on us as we waited at the Army doctor's offices for our well-child checks or other sick kids' visits (those were our best chances to mingle, at the doctor's!) We turned it on in the meeting hall to see that Operation Desert Shield had ended, and Operation Desert Storm had begun. Number one daughter was just 5 months old - she wasn't quite 2 months old when her daddy drove away in the wee hours to meet the plane that would take him over to camp in a foxhole in the sands. Number one son was in the other room, playing with the older kids. The acting post commander stopped by the meeting hall - he knew what we were supposed to be talking about that evening, and offered his knowledge and wisdom to our gathered group, even though we knew through our protocol training not to ask him much. He took number one daughter from me and moved to the back of the meeting room, just holding her as she slept, looking at her face as news of the bombs flying half a world away filled the room. He was a career officer, had probably seen combat himself in the 60's, but the news of the day hit us all hard, and seeing a soldier get strength from a baby was something I will never forget. Someone finally had the heart or sense or both to turn off the tv. We agreed that the topic at hand could be tabled for the next monthly meeting, and we gathered our kids and made our ways home to our dark houses, fighting thoughts of what the day's activities might bring to our small lives as we did the regular bed time stories, night time baths, and listened to prayers for daddies that were "working" away from home.

At the Armed Forced Day Parade
in Lawton, Ok, 1991. Daddy's home!

I write about this one 20-year-ago night in the hopes that I will be writing about what transpired in June 2006 in the year 2026. I see the strong young people that dear husband returned to help grow just a few short months after that January night, and I am grateful every day that we are together, after the endless minutes and hours where I had to face the reality that my kids might not even get to know their great father.  In another 15 years, anything can happen - here's hoping we are all around to see it together.

The two of them together today. 

(And as a nod to my swiss cheese memory - if I wrote about the start of Operation Desert Storm before on this blog, accept my apologies - today's announcement of it being the 20th anniversary just brought it back to mind again. Hopefully, I tell the same story each time - catch me if I don't!)

Adenoid Cystic Carcinoma in the news

Here is a research article (free to read, open access) from China, as published in the Journal of Translational Medicine: Inhibiting adenoid cystic carcinoma cells growth and metastasis by blocking the expression of ADAM 10 using RNA interference. The article says that research concluded that ADAM 10 is "potentially an important therapeutic target for the prevention of tumor metastases" in ACC.
I am glad they are doing this in vitro research (conducted on cells provided by the Peking University School of Stomatology), and greatly respect all scientists' efforts to reach a solution. The stepping stones research like this builds may someday lead to different treatments for our type of cancer.

But speaking as a child of the 60's and 70's - I really wish the protein they were looking for was
ADAM 12.

I haven't found many news stories about ACC in the past few months. If you see one, please send it to me at teresa.hartman@gmail.com.

Update on handling the cold weather after head/neck radiation and a skullectomy

(Swiss cheese memory precludes my use of the correct term for the removal of skull bone that I experienced back in 2007.) Based on previous years' experience in dealing with the cold weather (really hurts the radiated area, as well as causes headaches around the skullectomy site), and needing to avoid taking the acetomeniphen/ibuprofen alternating doses through day after day during the winter (the kidneys and liver are both crying "uncle"), I have been trying other things. Naturally, I wrap up with whatever warm, soft, non-scratchy items whenever I am heading outside. Dear husband suggested that maybe the "warm" theory was one to follow inside as well, and came home with a soft knit hat for me to try. It worked! My theory on why the hats work inside: when they removed that silver-dollar spot on the left side of my head in 2007, the surgeon replaced the bone with a mesh plate, then covered the plate with a 'spare' (?!) muscle from my jaw. What happens when you get out in the cold weather - your head tenses up, right? (Ok, mine does) That tension hitting the rearranged muscle set me up for extreme headaches every year from about October to May, even inside. So now, I have been running around at work, wearing hats like a Little Rascals character, again living the good life drug free. Warm head = no or small headaches. This has kept me out of the MRI/CT machines (go and say "headache" when you have had a lesion or two in your head already, you are gonna get scanned!), and improved my outlook on life daily. Since I have heard that wigs are warm to wear, I may be looking into that option, just to shake up the fashion. I have a clown wig at home, a big rainbow colored thing....
The proper term for what I had done, where the skull was removed and not replaced, is craniectomy. I did not have brain surgery - they didn't have to go in after anything - but craniectomy and other aspects of brain surgery can be found on this MedlinePlus site about Brain Surgery: http://www.nlm.nih.gov/medlineplus/ency/article/003018.htm.

Happy End of 2010, and Beginning of 2011

Not sure that I have much to add to the millions of words that have been written about the year that is nearly passed, but I will try in order to convey my gratitude for having spent all the days casting a shadow. Yep, it has been a good year, over all. I have been able to spend time with friends, had unique experiences, witnessed great courage and strength in people that I know and have come to know, and am still on more-than-just-speaking terms with most of my relatives. Plus, started my first business, making jewelry. Pretty amazing, when you think about it.
I wish for all who read this a great year ahead, full of love and whatever makes you smile.

Holidays all over the place around here

Since my kids are now grown up, I searched for a way to celebrate the holidays with them and their dates, while still making it festive. Here in Omaha, we are very lucky to have the Omaha Community Playhouse's tradition of The Christmas Carol. I first saw this production 3 years ago after the skull operation - kind of appropriate, and I felt an affinity for Scrooge that I had never felt before after facing my own ghosts and coming out on the other side. Number one daughter was in Austria at the time, and dear husband was working the night shift, so it was me, my mom, and number one son that went to see it together. This year, it was me and dear husband, number one son and his date, and number one daughter and her date - the first time that our entire family attended. Pretty cool group we were, too! Afterwards, the old folks went home, and the young folks went out on the town for a bit. All in all, it was a good experience, and one that I hope to replicate in the years ahead. It would make my year to be able to email them to meet me at the airport, fly to New York, and see a show there together. I will have to work on that...
No matter what your plans are these days, I hope you find a lot of love.

Life is a-going on these days

What more can a person ask for, other than normal in their life? I am still living the good life here in Nebraska. Currently it is a tad colder than I would like, but we have a cozy house to come home to after work. Family is doing well. Dear husband discovered that, since the 25th wedding anniversary last year was Silver, the 26th this year is Nerf - and he is having a great time with his new toy. He figured out how to keep my winter headaches at bay this year by going to a lumber yard and picking up a very soft knit cap with thinsulate that I wear around the house, keeping my head warm. He bought another one for me to wear under the fleece wrap I bundle up in whenever I leave for work or shopping. Of course, this all fits into his mission of "that'll keep her quiet" - heh. The soft hats have worked, keeping my head all relaxed and toasty, so the rearranged muscles don't have a chance to seize up and start the pain cycle. Not the most romantic look by any means, but it keeps me from getting cranky, so that counts for something.

A fellow cancer patient and blogger needs funding for care

Jeanne Sather, author of the Assertive Cancer Patient blog (http://assertivecancerpatient.com) is currently undergoing treatment through a clinical trial - and it seems to be working (thank goodness!). However, she is about $100,000 short to cover her care over the next couple of years, which includes flying back and forth from Seattle to California for her treatments. She is asking for donations through her blog: Jeanne's Piggy Bank is Empty http://assertivecancerpatient.com/2010/11/jeannes-piggy-bank-is-empty-2-1-1.html. Information on how to donate is located here: http://assertivecancerpatient.com/2010/11/jeannes-piggy-bank-is-empty-how-to-donate.html . Please consider donating to her cause.

Located another ACC blogger

I found Karin's blog through the Rare Cancer Forum (the Rare Cancer list is linked on the right side of my blog): Mastering the Art of Living While Dying http://livingwhiledying.com/. She was diagnosed in 2008. Sending all good wishes of strength and healing to you, Karin.

Honoring another ACC fighter

I am so sorry to record here that Chadee Deen passed away on October 20. Her obituary is here. Memorials may be made to ACCRF.

What has Cheeky Librarian been up to lately?

Well, I attended the MCMLA conference for the first time since 2007 this past week in Wichita (last time I attended, we hosted it here in Omaha, and I had the skull lesion afterwards - nothing is allowed to happen this year like that!). The conference was held in the Hotel At Old Town (http://www.hotelatoldtown.com/) - a gorgeous place to stay, if you are ever lucky enough to visit Wichita.

The other thing I have been up to: I have started my own business. Teresa Hartman Designs. I make jewelry - necklaces, mainly - during those hours of being up at night with the headaches. As Dr. L. put it, "You are making lemonade". You betcha. I have a blog ready to catch pictures, but haven't posted any yet - I will announce it here when it is ready. I have a Facebook store page if you want to become a fan, but haven't set up the buying function yet. What I have done is create about 200 necklaces, and I have my first show this Thursday and Friday at the Nebraska Library Association (thanks to generous donation of booth space by Eastern Library System!). Then, I will be joining Osborne Originals (an expert artist creating beautiful basketry) on November 6 here in Omaha for an in-home open house of our wares, just in time for the holidays.

It takes my breath away to think that the beautiful shiny objects I create during the o-dark-thirty hours find new homes with people that like them. My kids say that I create the necklaces like I used to cook - using the different textures and colors of beads to add "flavor", arranging them on my bead mat like yellobagman did with beautiful spices in his Flickr photo. Dear husband approves of this new venture. He said during a bead store visit, as the saleslady commented that she didn't see too many husbands join their wives on buying trips: "That's ok. I know that if we buy the beads, she will be quiet and happy." Heh - what husband wouldn't love that result? (And yes, 'quiet' always comes before 'happy' when he retells this story - I am sure I don't know why.)

National Take-Back Initiative for controlled substances this Saturday, Sept. 25

The DEA offers us the chance to anonymously surrender (their word) our expired/unused/unwanted drugs for destruction this Saturday. Here is a news item on it: http://www.cnn.com/2010/HEALTH/09/21/drug.take.back.campaign/index.html?iref=allsearch

And the DEA page: http://www.deadiversion.usdoj.gov/takeback/

You can search for locations in your area that are set up to receive your unwanted drugs on this page. For me in Omaha, it lists sheriff and police stations and mobile command posts. Solid drugs only are accepted, and meth and marijuana are not part of this program.

If you have unwanted drugs in your house from recent treatment, the EPA recommends that you contact your local waste management service to find out specific disposal instructions for your area: http://www.epa.gov/ppcp/faq.html. The main point - don't flush them!! Here are recommendations from Illinois - you should be able to find your state's recommendations by calling your local public library.

An example of what drugs live on in the water even after wastewater treatment can be found in this 'medicinal salts' product recently highlighted on BoingBoing: http://boingboing.net/2010/09/15/alvisos-medicinal-al.html . (Fact: these are not just drugs that folks flushed, but some drugs live on in our human waste, passing through our bodies without being absorbed or changed, so wastewater will always have some drugs in it.)

Adenoid Cystic Carcinoma in the News

I found Huston Diehl's obituary this weekend while searching for news on ACC/AdCC. She died this past week from the disease, after being first diagnosed in 1998. As a professor at the University of Iowa, she was a prolific author, and great mentor of others. Here is a link in Worldcat for her name (some materials may possibly be attributable to another author with a similar name, but most are hers or reviews of her work): http://www.worldcat.org/search?q=au:huston+diehl&qt=advanced&dblist=638 . They had a symposium in May to honor her - how cool is that, I had no idea that such things took place in academia:
http://www.english.uiowa.edu/includes/documents/diehlsymposium5_2010.pdf

This announcement about the symposium links to the English Department's Facebook page photo albums to show the activities and smiles the days brought: http://www.english.uiowa.edu/news/2010/05_06.shtml

Here is the link to her obituary in the Press-Citizen newspaper: http://www.press-citizen.com/article/20100910/NEWS02/9100312/Huston-Diehl-61. And here is the link to the funeral home's condolence page: http://www.funeralquestions.com/obits/lensing/memorial.asp?listing_id=160923 . Memorials are requested for a scholarship fund - what a wonderful way to memorialize her work.

Someone asked me why I include obituaries on this blog. My main reason is to pass on history of who has shared this path, as individual as it is for most of us. The other reason is to show that life doesn't end with a cancer diagnosis - no matter how short or long the time someone has after being diagnosed, important things take place, opportunities and successes happen, and most are mentioned in obituaries. You can't read Dr. Diehl's obituary without feeling her passion for education and the students that she dedicated her life towards, even after ACC showed up.

These postings are not to bring down my readers - they are intended to lift us up, to say there is a tomorrow and something wonderful and meaningful can still take place even though we are walking around with a confining garment called cancer. And remember - I write for the future Cheeky Librarian, so some middle of the night-o dark thirty moment, I can read this post and remember to hang around another day, just to see what is coming next.

Farewell to Jessica Roark

News on Jessica Roark's death came this morning:

KU grad left legacy of courage http://www.kansan.com/news/2010/aug/31/2010-ku/

Additional news story (9/1/10): http://www2.ljworld.com/news/2010/sep/01/ku-alumnas-outlook-life-positive-influence-she-lef/

Tribute to Jessica in the Kansas City Star (9/19/10) http://www.kansascity.com/2010/09/19/2235287/tribute-jessica-roark.html

Jessica Roark has appeared at least twice before in this blog -

First http://cheekylibrarian.blogspot.com/2008/05/adenoid-cystic-carcinoma-in-news.html

Then http://cheekylibrarian.blogspot.com/2009/05/adenoid-cystic-carcinoma-in-news_20.html

I want to claim Jessica's quote from her 2008 interview as advice for my life:

“Sometimes I think about what happens if I die, but you can’t think like that,” she said. “You have to live your life however you want to live it. You can’t plan for a car accident tomorrow, but you’re going to get in your car anyway.”

Thank you for all you did for the world, Jessica, and for living your life however you wanted to live it. May we all do the same.

Connecting to another Adenoid Cystic Cancer person

Yeah, I know - we are so much more than our rare cancer - but how else do we call each other? I recently was introduced to Shalil's blog, and she agreed to let me post it so you can check out her story. She started writing her blog this past April when she was first diagnosed. Here it is: http://www.caringbridge.org/visit/shalil

Undergone recent cancer treatment? Pay attention to the egg recall

If you or one of your loved ones has undergone recent cancer treatment, or are otherwise immunocompromised for any reason, please pay attention to the news about the egg recall. Here is a link to the FDA announcement:

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm223248.htm

To keep up with food recall announcements, here is a link to the FDA "What's New in Food" page:

http://www.fda.gov/Food/NewsEvents/WhatsNewinFood/default.htm

There is a link to receive email updates. You can check with your local health department to see if they have notification services for you as well.

New TV show about cancer

Showtime calls this a comedy: The Big C. Here is a link to the first episode that should be good for 20 days:

http://www.imdb.com/video/TV/vi318309913/

Looking forward to your comments about it - please let me know what you think about this one, guys.

Adenoid Cystic Carcinoma fighters/survivors on the web

In the effort to corral ACC stories in one spot, I go out hunting for likely sites that I can link here (and also depend on the kindness of my readers to point me to new sources/sites). Here are some that I located recently:

The ACCOI has a Facebook page, which links many people's stories in one spot. The wall also gives a place for folks to enter upcoming get-togethers/fundraisers, so it is definitely worth more than one visit.

Through that page, I found Fred Marshall's journal site : http://www.caringbridge.org/visit/fredmarshall/journal

Kimberly Kuklinski's journal site: http://www.caringbridge.org/visit/kimberlykuklinski

And a wonderful welcome from the ACCOI president, Dan Dube (accent over the e) - great to see you again, Dan!

Peter Tork is one of us "lucky ones"

Found this story about Peter Tork and his band, the Blue Suede Shoes, playing after Augusta Skyhawks game tomorrow: http://www.strausnews.com/articles/2010/08/13/new_jersey/arts_and_entertainment/4.txt

Now that's the type of news I like to link to! May all of us overcome ACC and its treatment, and keep on with what we enjoy. I wish him and his band every success.

Adenoid Cystic Carcinoma in the news

1. I saw this research on ACC of the breast announced - the link to the PubMed citation is included here so you can read the full article: Adenoid cystic carcinoma of the breast in the United States (1977-2006): a population-based cohort study. http://pubmed.gov/20653964
Click on the Breast Cancer Research button on the upper right of the page to get to the publisher's page - then click on the pdf link, again located on the right side of the page. Of note: in case anyone wondered how rare this disease is, only 338 women were diagnosed with ACC of the breast during those 29 years, according to SEER data.

2. "Cancer overcome, next hurdle is triathlon" - Harrie Bakst's story of how he has worked to overcome his 2007 diagnosis and treatment of Adenoid Cystic Carcinoma by taking up marathons, and is now taking on the New York City triathlon is told in the Riverdale Press (a New York state paper, maybe in the Bronx - someday I will get on my librarian soapbox about online newspapers not saying where they are located): http://riverdalepress.com/stories/Cancer-overcome-next-hurdle-is-triathlon,37330. I look forward to hearing how he did during the race. The New York Triathlon organization has many more offerings in 2010 if you want to follow Mr. Bakst's example: http://www.nytri.org/calender.cfm

3. "Unlikely friends find bond in cancer battle, firefighting" - Dan O'Connell, a Massachusetts firefighter undergoing treatment for Adenoid Cystic Carcinoma, and Marissa Fabiszewski, from Pennsylvania, got to know each other during their respective cancer treatment in Boston. The story of their friendship is told on the NBC Philadelphia website: http://www.nbcphiladelphia.com/news/local-beat/Unlikely-Friends-Find-Bond-In-Cancer-Battle-Firefighting-99442169.html.

Annual check up report

Well, it is official - I am now just a boring patient to my head/neck treatment team. Yep, no aliens in the brain pan or cheeks, no out-of-the-ordinary causes for the pain I experience (a small price to pay for them working so hard to save my life, as I see it). I don't see them again as a patient for a whole year - unless something out of the ordinary DOES raise its ugliness in the next 12 months. That is, of course, not allowed, nor is it included in my personal timeline. I have some bills to pay off, some money to save, lots more love to share with family, and maybe, just maybe, traveling farther than the Minnesota IKEA store in the next 12 months. Here's to all of us continuing to cast a shadow, and aiming for living the most out of the days we are given.

(Note: I took the photo at a visitor's center in Branson last month.)

Summer food is great!

Thank goodness for all the fresh veggies and melons and blueberries that are offered in the stores now and at farmers markets. I picked up a 2 pound package of huge blueberries at Sams - those will be my weekend treat. We also stopped by Aldi last night, and they had a special buy on frozen cooked mussels - only 2.99 a box. The only time I remember having mussels was in Vancouver, BC, during that fantastic MLA conference (ah, librarians-the best people to get together with!). I figured I would try them again with my new mouth, and it was very successful. I bought one box frozen in their 'natural juices', and one of 'garlic and butter' flavored, heated them up (less than 10 minutes, folks), and sat with my bowl full of steamy mussels in the shell and snarfed. Lucky the dog looked wistful, but it was only because he loves butter - would have been great to see what he would have done if I had flung him a shell (but that was NOT going to happen). I will have to catch up on veggies today after skipping them last night, but the mussels were so fun that I stopped there.
Today is National Cheesecake Day, and since I can by-golly do some cheesecake, I bought 2 frozen Cheesecake Factory cheesecakes at Sams and am taking them to work. I don't share too much with eating things at work, so when I can, I want to make a special event. Plus, its cheesecake! Can't go wrong there...

First MRI in a while tomorrow

I am up for my now-annual checkup (first time it has been set for a year since 2006), and one of the things called for is an MRI of my head/neck with contrast. If you are up for an MRI for the first time, you can find out more about the procedure at this site: http://www.nlm.nih.gov/medlineplus/mriscans.html . As the page says, "the MRI machine makes a lot of noise"-heh, that is an understatement. Ask for earplugs-they are necessary. Here is another link about MRI of the head, specifically: http://www.radiologyinfo.org/en/info.cfm?pg=headmr. There is a form to fill out before they do the scan, asking if one has implants or metal in the body-I always let them know about my titanium plate and crowned teeth, but by now all they should have to do is check my patient record. As far as I know, I don't have any other clips or metal bits in my body from previous surgeries or accidents. The magnets are always 'on', so nothing metal is allowed back in the area-there are ugly stories about accidents involving MRI's terrific magnetic forces.
I have never really noticed that the scan is done in a 'tube'-there is a light on in there, air flows over my head, and I always ask for a dry washcloth to be put over my eyes so I haven't personally seen how close the sides of the tube are to my head. My head is placed in a cage of sorts to hold it still. They put more sponges/wash cloth/something along side my face to keep me stable for the test (that is actually the most uncomfortable part of the test-much worse than getting the IV set up- if they happen to hit my bad ear and radiation neuropathy'd cheek area as they shove the wash cloth down between the cage and my head). Your doctor can set you up with pharmaceuticals to relax you, if you might be claustrophobic - always ask for them. The technicians can talk with you throughout the scan, so you aren't ever alone.
Don't worry about dressing up for this test. Leave all jewelry, etc. at home or you can put it in the locker in the dressing area. Piercings of any kind and anywhere on you should be taken off, of course. Another modern wrinkle-if you have a tattoo, you might find it a hot spot during an MRI-it heats up iron-based inks.

Note from the Cheeky Librarian

If you are an ACC patient (or family member/caregiver) going through your initial treatment period, please remember that each of our stories and disease progression are different, since this is a very rare disease. Some of us go decades without additional cancer showing up, after the initial treatment is completed. Others have mets show up quickly, and have to go into accelerated treatment protocols just to see if the cancer tide can be turned back to healing. If we all got in a room together, we would each have a different story to tell, I can bet you. We still have each other-we just can't use each other's stories to judge what we will face ourselves in the days/weeks/months ahead. But we can sure lean on one another. Stay close to your professional treatment team - they will be your generals in this fight. Contact your local medical or public library for additional research information that you can discuss with your team - I have links on the right side of the blog to help you find libraries. Gather strength and support from your family caregivers. And let the rest of us ACC fighters know how we can help support - whether it is helping with fundraising, getting the word out, or just emailing you with the latest funny animal picture from icanhascheezburger.com to give you a laugh. None of us asked for this particular path in life - my personal request was to have enough money to put in an in-ground pool-but we are walking it, and we are walking it with others that know a bit of what we face. Aching heads - many of us have those (sometimes feels like there are two of them on my shoulders); ringing or plugged or silent ears-yep, due to radiation or fluid buildup after surgery; facial muscles that no longer obey commands; fears in the middle of the night that that pain in your back is a met; worry about partners/children facing another round of illness in the household; carving out life while wearing the cancer badge... Most all of us have similar feelings sometime, so please know you are not alone unless you want to be. The ACC folks I have met are a very warm and respectful bunch. If you get the chance, attend the Mokene, IL Attack ACC fundraiser on August 7-you will see what I mean. If you can't attend but want to meet others online that face similar things that you find yourself facing, check out the forums I have linked on the right side of this blog. You can always drop me a comment, too - I am fairly good at answering. Please remember this advice I got from a wise nurse: despite having our lives changed by cancer, WE ARE MORE THAN THE CANCER. Enough said.

Another ACC warrior is gone

I learned from a concerned reader that Audrey McCutchen died yesterday after fighting ACC since her diagnosis in May 2009. You can read her story on her Caring Bridge blog: http://www.caringbridge.org/visit/audreymccutchen/mystory.

notes from her blog:

"[Her] memorial will be held at

11am on Saturday, July 31st 2010 at
Divine Mercy Catholic Church in Merritt Island, FL.
(Map at this link: http://tinyurl.com/33x7k7a)
(Hotel information: http://www.gui-dynamics.com/Hotels.htm)

In lieu of flowers, Audrey requested donations be made to the Adenoid Cystic Carcinoma Research Foundation. Tax-deductible contributions may be made at http://www.accrf.org. ACCRF is the key catalyst for ACC research, as the patient population is too small to receive research funding from most other sources such as the American Cancer Society."

Where has the Cheekymobile been lately?

Back in Omaha now, thank goodness, but the Cheekymobile has been traveling. I went to Branson with my mom - we both like the same sort of things, and she didn't complain once if I made the wrong turn, or comment ever on how Iwas driving on the VERTICAL roads in Branson. (The rule there is to strategically place a 4 way stop at the top of each mountain.) The Cheekymobile may have to have its clutch or its emergency brake looked at (joking-I think they are ok), after all the stop and go on the hills that I did. We had a marvelous time.

First, we went on the paddle-wheel Showboat Branson Belle. We ate lunch in the exclusive Paddle Wheel dining room, where one

waiter took care of us and only 4 other parties as we watched the lakeshore glide by, eating wonderful food (mine was a fish dish with cheesecake dessert, and mom had the carribean chicken). Nothing like decadence when one can savor cheesecake on one of the biggest man-made lakes in Missouri. We went down to see the show during their intermission-there were long rows of tables in front of the stage where the folks who had the regular tickets were eating. The show was wonderful-a comic magician, and a 4 person dance/singing act that had all the energy I would need for about the next 20 years -but they spent it all in an hour. Mom and I had a blast!

That night, we went to see Brule (accent over the e). I have the group's cds, and had heard them in person at a library convention in Sioux Falls, SD about 5 years ago. Their music was what I listened to during the radiation weeks, and all night long after my skull operation - really good stuff. To see their big show in person was fantastic, and we felt drained by all the clapping and vicarious dancing that we did while watching them. I met the leader of the group afterwards, thanking him and his family/group for sharing their art, and telling him I met him back in SD. He laughed, and said that they had been worried about that gig, wondering how librarians would react, then how they w

ere very surprised to see us dancing on the tables (I know the librarians that did that-not me, but some of my wonderful, spirited colleagues). After the two great experiences we had on Tuesday, we thought maybe the rest of the week would be downhill, but the 12 Irish Tenors were on the ball Wednesday morning, and we again had the time of our lives. Had lunch at an Italian restaurant, with both of us having fish in a nearly empty place (ate early, and the place filled up as we sat there). Traffic getting around Branson is a nightmare, even with less tourists-I would not want to be there with the usual number of visitors. Unbelievable about the traffic, but most folks are polite and will let you out if they too are stopped and waiting on traffic. We took one trip down to the 'old downtown' on the east side of Branson-didn't even get out, parking and traffic were sooo bad. That is the side of town that has a brand new convention center (Hilton is the convention center hotel), so they have created a series of upscale shopping over there for the visitors that haven't a prayer to get over to the west side of town during their meetings, and called it Branson Landing. I actually wanted to see a couple of the shops there, but it was walking outside, and with my aversion to heat and sun (the hat was doing nicely, but couldn't protect from the sidewalk's radiating heat), we just made our way slowly in the car back to the condo we had rented, and sat there, watching the golfers that trekked their way through the ravine in back of the condos that had been wrestled into a golf course. The heat hadn't let up by the time we went to the Shepherd of the Hills play at 8pm, but mom had again gone

first class and bought the VIP tickets so a tram would deliver us to the second row seats. I swear the road was built on a 87 degree slope-no way we would have been able to walk it. The play is celebrating its 50th year - oh, and if you have seen the John Wayne movie version of Shepherd of the Hills, you haven't got the right story from Harold Bell Wright's book (the actors told us that before the play started). The pre-show was a frog jumping contest for all the kids in the audience, trying to get their wiggles out before the long play started. It was fun to watch, but the actors in their wool-based period costumes were wiping off beads of sweat as big as marbles. The sun went down about intermission, which was a square dance party that involved the audience if they wanted to join in. The play started up again, and ended with all lights out, tree frogs and crickets singing and chirping loudly, and the two separated lovers meeting up after death, dressed in glow-in-the-dark sheets and rising to the top of the barn by way of a winched platform. About the time they got up past the top of the barn, a shooting star-real one, honest-appeared, so I have a wish that still needs to be made.

Thursday was shopping and one more show-Moe Bandy. Mr. Bandy was the only 'country music' show we saw. He was performer of the year in 1979, so I remember hearing him on all of my road trips, truck driving days, and driving to and from college, then again on AFN in Germany when they would have their country music hour in the day. He stood up on stage and admitted that our group of 60 or so in the audience was 'light', but he and the band would play as if we were 3000, which is what the theater held. And he lived up to his promise. His troupe included a funny comedian/clown named Harley Worthit. Mom got to get up close to one of her favorite singers, and he gave me the chance to get their picture. He promised to stay as long as people wanted to talk with him, and I bet he did. One of the great parts of his show - he sang all the top songs that he had originally said 'no' to when their writer sent them to him to consider-and each one of them had gone on to number one by another artist. Not sure I could be that big a person about what I passed up-gave me something to think about.
The coolest thing was - each of the 5 shows had a different tribute to the veterans. The Irish Tenors played the songs of each of the branches, and asked people to stand when theirs was played. Brule gave a special drum tribute to honor veterans. Moe Bandy asked veterans and spouses to stand as he recognized the branches-I got to stand for Rick's (and my) service. The most touching was at the play-they had a color guard on horseback come in, and the audience sang our national anthem, and pledged allegiance.

The trip was good, and even though I was only a few hours away from where I did most of my growing up, I felt like we were on another planet while there. I had very few food issues - having menus on the web gave me plenty of planning time, and staying in a condo meant that most of our meals we cooked. Mom had a great time, and I was happy for that too. Collecting memories is about the best thing I can spend my time doing, these days!

We lost a champion this month, who left us with advice

I just mentioned Amy Jackson in this blog back at the end of May - she had been diagnosed on April 15th: http://cheekylibrarian.blogspot.com/2010/05/adenoid-cystic-carcinoma-in-news.html. I just learned that she died on July 3rd. My sympathies go out to her husband and 6 children, and all of the community that has supported the family during this rough road. I took a look at her blog: http://kissesforamy.blogspot.com/, and found that she had given us all advice to follow. I include a quote here:

"Enjoy the simple things in life... Every minute you spend with your children even doing the simple mundane things of everyday life is important... Take time to make the most of every little thing you do with and for your children. Enjoy time talking to and listening to your kids even when talking about the most simple topics. cherish every minute with your family. Never take for granted the little moments. We often remember and think about major moments and events in our families lives, but I am now convinced that it is a combination of all the little things, things that we do or say during everyday living, that make up what we really know and remember about each other. It is those things that really develop the relationships that we cherish. Consciously put to memory the little precious moments with each family member. Don't take for granted all the little things in life. Take the time to count your blessings, be grateful for every minute (even the hard ones or times when you may want to pull your hair out), take time to share your love with each of your family members, and Enjoy the simple things..."

I just saw Brule in person!!

Ok, I know you aren't supposed to say you are out and about when talking on the web, but I cannot remain silent. I just saw my most favorite group of performers-singers, dancers, instrumentalists-while here in Branson. (Yes, if you have heard any Cheekymobile sightings in southern Missouri this week, they were true.) Brule (there is an accent over the 'e', but this librarian hasn't figured out how to type it) is a contemporary Native American music group. They are award winners- individually and together. The leader of the band found out later in life that he was Lower Sioux Brule (no accent over the 'e'), and began to meld his two worlds together-his unknown heritage with today's world. Here is their site-http://www.brulerecords.com/home.html. They don't have a word for goodbye in the Lakota language-just one that says we will meet again, either here or in the next world. I have met them before, in Sioux Falls, SD, when they played at a librarian conference. They were the music I listened to on my iPod after the skull operation, when I was so happy to have my memories. They were the group that I played the loudest in the Cheekymobile when I lost my voice last summer. They are the group that my mom and I listen to in the car during our road trips, including the one to Gulf Shores and last year to St. Louis. I have never been a 'groupie', or a 'fan' (short for 'fanatic', after all) of musicians, but I was unashamedly that tonight, after listening/experiencing their music and dance at the RFD-TV Theater. My mom and I loved every minute of the night-what a way to celebrate life!
This may be a stretch, but when I received the diagnosis of cancer, I too began to walk in two worlds. Thank you, Brule, for giving me strength and rhythm for my strides as I work to keep up with both of them. Keep on keeping on, Brule. Congratulations on your success, and I wish you years more.

Adenoid Cystic Carcinoma in the news

This news comes from Williston, North Dakota, via the Williston Herald website: Local cancer survivor stays focused on her life, not fear http://www.willistonherald.com/articles/2010/07/03/news/doc4c2fc0f397874189380350.txt .
Suzi Lee was initially diagnosed in 1989 with ACC, and underwent treatment at the time. The cancer came back in 2007. She, like the rest of us, knows she isn't in the clear even when the scans show no evidence of disease (NED), but she stays focused on living. A quote from the story:

"That's kinda where my focus is. I don't want to worry about it (cancer). We do what we need to do to monitor it and live life the rest of the time. I believe God has a plan for me, and I don't want to stand in the way of it," Lee said.

Thank you for sharing your strength with the rest of us traveling this road with you, Ms. Lee.

It's been 4 years

Thank you, new or long-term reader, for following my story or the news about this cancer I have posted over the 4 years.

Wow - 4 years ago, I heard the surgeon say, "The tumor was adenoid cystic carcinoma." Not the news anyone wants to hear, and definitely a holiday weekend buster. We told the kids, then all sat down and watched a new movie we had rented: Queen Latifah's Last Holiday (hey, it worked for me, and started some good family discussion at a time we were all shell-shocked). We spent the next few weeks seeing how cancer would fit into our family life, and healing as quickly as possible before the radiation started. Since that time, I have done more healing, and had more news to deal with (2007-another "growth" in my skull that had to get whacked out), and scans scans scans to see if anything else was growing in the Cheeky Librarian physical body.

I hope this blog continues to be a source of information for anyone facing Adenoid Cystic Carcinoma, or their caregivers/friends. I also hope it shows that life does go on - I didn't magically transform into another person through all this. I have retained my cheekiness, believe me. Just because I have survived this crappy disease for 4 years does not make me anyone special - luck, support, and cussedness all play a part (and, according to new research, thinking of oneself as good or evil helps: http://mentalhealthnews.org/good-evil-acts-can-increase-physical-abilities/841389/). But if I can use my professional skills of locating and sharing information (the "Librarian" part of my blog title is no lie), then there might be something positive to come out of all this. If you just got the news that you have cancer, my wish is that something in these 377 blog posts is of use to you: humor, information, description of my individual treatment path, or links to others that share our diagnosis and their stories.

Adenoid Cystic Carcinoma in the news

Another set of ACC heros, Marnie and Jeff Kaufman of Massachusetts, were in the news yesterday:

Couple raises $3M to fight rare cancer: effort a "race against time"
http://www.thebostonchannel.com/asseenon5/24068743/detail.html

The Kaufmans set up the Adenoid Cystic Carcinoma Research Foundation [ACCRF], after Marnie was diagnosed with ACC and went through treatment in 2004. Since that time, the effort to research this rare cancer has increased, offering hope to me and the rest of us wearing the disease.

So if you are sitting around, thinking that an individual can't make a difference in this ol' world, take a look at the Kaufmans and the Almanzas (from the June 25th post)- great things are accomplished through determined individuals pushing against great obstacles.

Adenoid Cystic Carcinoma in the news

A great story about a great woman in Illinois who has lived with ACC for 19 years, Alicia Almanza:

Rare Cancer Spurs Mokena Family To Action
http://www.chicagotribune.com/news/local/southsouthwest/ct-x-balance-daughter-advocate-0625-20100625,0,7457999.story

Alicia, like anyone else that shares this cruddy cancer with me, is my hero. Her daughter, Courtney, is also my hero. They have created Attack ACC (http://www.attackacc.org/). In 42 days, they will have another fund raiser - if you are close to Mokena, IL, please head on over and take part.

Dream Foundation - making dreams come true for adults with life-threatening illness

If you know someone that has a life-threatening illness, or you want to donate to a foundation that answers dreams for adults, check out the Dream Foundation: http://www.dreamfoundation.org/dream-request.html. I learned about it when I read a recent story of an Omaha man that had his dream answered to visit the oldest Marine unit in the US. I like their tagline: "...because adults have wishes too." They are aiming for 10,000 dreams granted in 2010 - here's to them running out of people with dreams before they run out of program monies.

Congratulations, Gabriele Anderson!

I know that none of us (that have received the awful news that we have adenoid cystic carcinoma) expect or strive to become poster children for life after cancer, but this photo of Gabriele Anderson should be on every cancer center treatment room wall to give hope to others that are facing the unknown after any cancer diagnosis: http://www.startribune.com/sports/gophers/96349099.html?elr=KArksi8cyaiUncacyi8cyaiUiD3aPc:_Yyc:aUU . Ms. Anderson, congratulations on your dedication. The quote from the Gophers coach says it all:
=========
"People have said to me, 'She's running so well. Why?''' said Gophers coach Gary Wilson, who has guided Anderson for six seasons on the track and cross-country teams. "If you have cancer, you know why. Everything has been put into perspective.

"She willed herself to do this. And the way she fought, and what she's done, that's going to be a story around here forever.''
=========
Congratulations on ending your academic career on such a high note, Ms. Anderson. And I personally thank you for giving me hope, that I can also achieve great things despite having the cancer diagnosis in my past. I have a feeling that we will be hearing about Ms. Anderson more in the years to come.
(Note to the ACCRF - here is a future speaker for you to consider!)

Wishing the best for the Golden Gophers at the NCAA championships

Gabriele Anderson, a senior at the University of Minnesota and a key member of their track and field team, will be competing in the 1500 meter run. Ms. Anderson has remained an excellent athlete after overcoming ACC - I have posted about her before. She recently broke the 26-year old school record for the 1500 meter run, posting a time of 4:15:43. Here's to all the Golden Gophers winning - even though I know of one that has already won a key race in her lifetime.

Omaha lost an ACC fighter on Wednesday

Leigh Hlavec passed away Wednesday after fighting ACC for 9 years. In the Omaha World Herald story here: http://www.omaha.com/article/20100604/NEWS01/706049913, it says that she will share her funeral with her father, who died from surgery complications.
My heart goes out to her family.

Cancer information in the news

Curious about the validity of information offered at Wikipedia? Here is a blog post about recent research on cancer information housed at Wikipedia:
Wikipedia Cancer Info Passes Muster http://voices.washingtonpost.com/checkup/2010/06/wikipedia_cancer_info_passes_m.html?wprss=checkup

The International Agency for Research on Cancer (IARC), part of the United Nations, predicts that by 2030, 13.2 million people will die each year from cancer, and 21.4 new cases will be diagnosed annually. More information on their report can be read at this Reuters article: http://www.reuters.com/article/idUSTRE6504H820100601?type=domesticNews&feedType=RSS&feedName=domesticNews. Here is a link to the IARC report page: http://www.iarc.fr/en/media-centre/iarcnews/2010/globocan2008.php

Here is a link to the GLOBOCAN database that shows cancer incidence and mortality worldwide in 2008: http://globocan.iarc.fr/. GLOBOCAN is part of CANCERMondial, a site that provides access to various cancer databases: http://www-dep.iarc.fr/

Adenoid Cystic Carcinoma in the news

1. A touching story about how the Santaquin (Utah) community has come to the aid of one of their own that is newly diagnosed with ACC: Community Rallies Around Santaquin Mom With Rare Cancer http://www.ksl.com/?nid=148&sid=10987102. Amy Jackson, you are in my thoughts. Thank you for all you do and have done, and kudos to your community for stepping up and letting you know how you have touched their lives.

2. Sad news that the former chair of medicine at Stanford School of Medicine, chair emeritus Edward D. "Ted" Harris Jr., MD, died at the age of 73 on May 21 after fighting with ACC. http://med.stanford.edu/ism/2010/may/obit-harris.html. Dr. Harris' research centered in rheumatology, particularly rheumatoid arthritis. My grateful thanks to his family for asking that memorial contributions to be made also to the Adenoid Cystic Carcinoma Research Foundation - the research done in his name on this cancer may change almost as many lives as his long medical research and education career did.

Update on the nose situation

I visited an ENT fellow (who is just about finished with his residency, and will be heading out very soon to begin his professional practice) on Friday, and got the lowdown on how my nose is doing (re: sinus rinsing resulted in hours, nearly days later whooshes of water spraying out of my nose). After getting up close and personal with a camera up into my sinuses, he pronounced me fine and dandy in that area of my anatomy. In fact, he said, if he didn't know that I had had radiation to the head, he knew of many people that would like to have sinuses like mine (so now I know that radiation cures sinus problems, and acne - go figure). Evidently, radiation causes the tissue to shrink, so I have caverns up there, compared to some folks that have cramped sinuses. The only bad part - my caverns still have the little bitty openings that most folks have, so the water that goes up there stays until something (never did find the right movements to do it on cue) brings it back down the nose. I figure if I get into the rinsing habit, it may be something I will reserve just for Friday and Saturday night, something like how I used to govern alcohol imbibing (relax - remember, I don't do that anymore). He said that I needed to keep my nose like a dog's - wet. He suggested saline nasal spray, drink lots of fluids, and some sort of ointment (vaseline, bacitracin, whatever), and see if that takes care of things. I thanked him for new coping tools, and danced out of there, glad that he didn't find anything else (well, there was a mention of a crooked septum, but I am not at all seeking elective surgery - had enough of the other sort, thanks.) I also checked with Lucky the Dog when I got home to see what he recommended, but he hasn't gotten back to me yet.
So, back on the straight and narrow, with only a few more hospital bills to pay than I thought there would be before my head/neck MRI in late July before I see the head/neck guys again in August.

How to manage your death portfolio

from CNBC: How to manage your death portfolio http://www.cnbc.com/id/37088214/.

I like their description of a "family love letter".

Another network "Stand up to cancer" planned for this fall

from the NYT: http://www.nytimes.com/2010/05/20/arts/television/20arts-TVNETWORKSPL_BRF.html . Question: does anyone know how much money was raised and what was done with it from the first Stand Up To Cancer in 2008? That would be useful knowledge.
(By the way - not sure if I will be posting to NYT articles in the future - I have heard that they will start charging for their online content. Too bad.)

Do not read this while eating or preparing to eat

Yeah, I thought that would get your attention. I visited the head/neck guys last Tuesday, asking about the increasing headache, some more tinnitus, and wondering why I have bloody mucus in my nose. No new offering for the headache - heck, for $120,000 (roughly), I should be enjoying the headache all the money brought me. (Joking, of course - sometimes pain means we are alive, and should be grateful.) I should go get a hearing test for the tinnitus. The nose issue caused more attention. They recommended that I use a 'sinus rinse' aka nasal wash (now referred to in our household as nose enema or nasal douche) twice a day for the next month, along with an antibiotic ointment skillfully placed with a cotton swab. When I picked up the ointment from the pharmacy, the pharmacist was careful to tell me to use a new cotton swab for each side of the nose, and to 'just coat the nostril, don't put a lot in, like your mom did with vaporub". I really like directions like those.
Rinsing your sinuses/douching your nasal cavity/giving your nose an enema involves some preparation. I have opted for the home route -mixing my own salt/baking soda solution in distilled water (but I am probably going to move towards the premixed packets very soon.) I fill up a squeeze bottle with the mixture, set the bottle in a glass of warm water to warm it up a bit, then put the bottle tip to one nostril and squeeze gently, feeling the water swirl around in my head before it finally exits out the other nostril like a clear river (oh yeah, did I say I was standing at the sink while all this is going on?). I am up to doing about half the bottle for one side, then stop to blow gently ( bunch of blood clots come out about this time), then I gear up and do the other side with the remainder of the bottle, blowing out the blood clots after the water drips ease up. I tried a neti pot, but simple gravity doesn't seem to get the water up into my nose - it just stayed in the pot - so I went back to the squeeze bottle. The really weird thing - 4 to 8 hours later, water just suddenly spurts out of my nose. Exactly where has it been lurking, that is what I would like to know! Even after doing toe-touches and every other thing I can think of to get my head down and in various directions (within my since-2006 restricted head movements, that is), the water still suddenly appears later. I am going to turn into that little old librarian with a tissue tucked up in her sleeve after all, I can just tell! I figure my coworkers probably just think I have picked up a coke habit...
Let me know if you have advice for a new 'nasal washer', or if you have your own experiences you want to recount here.

Thanks to BP, the second part of our anniversary has changed

Well folks - who would have known what today's Gulf of Mexico would look like when I booked a condo in Gulf Shores, AL way back in January. We were heading down to take romantic walks on the beach, eat some great Royal Reds (shrimp, HUGE shrimp), and just sit and have the sea breezes waft over us. Not happening. The mister was in a Gulf back in 1991 with burning oil - taking him to an area that has been declared an emergency due to oil again probably wouldn't be the best memory maker for our next 25 years. I figure this is similar to planning a trip to California, and having to cancel it due to forest fires. I am so so very sorry that the wildlife and human life will be experiencing the trouble they are about to (or are already) have thrown at them, but the Cheekymobile won't be driving down to the ocean any time soon. Not sure what we will do instead. I had also hoped this trip would boost me up before my unexpected head/neck doctor visit in mid-May (I know, too much for one small trip to shoulder, anyway), but will face them beach-less.
Where ever you are, I hope your travel plans are holding up and you get to make some memories no matter what. I have the feeling that memories are something we CAN take with us.

Forgetting cancer by visiting the Woodstock of Capitalism

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

Adenoid Cystic Carcinoma in the news

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

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

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

Celebrated my ten year anniversary at work

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

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

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

Attention all Peter Pals,

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

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

With love,

Dianne

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

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

Adenoid Cystic Carcinoma in the news

A few stories out of recent news items on ACC:

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

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

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

Google is now Topeka

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

Discovered a bit of my own past

I am officially listed as a "missing classmate" on my high school class reunion site - something I find extremely funny and take as a high honor, since the mister and I both graduated from the same school, on the same day, and we have traveled back to the home town about 3x a year for the past 30 years. At the risk of being discovered, here is a link to the folks I shared my last year of high school with in Missouri: http://www.smithcotton79.com/Yearbook.htm. Some are gone now; some are just 'missing', like me; but many of them showed up for the 30th reunion in October and evidently had a roaring good time. I think it is safe to say that each of the faces in the yearbook has made a difference in this world in one way or another, though, and that was all we hoped to do when we graduated. I know that each of them made a difference in my life, and I am glad to have had the chance to share high school halls with them. For the few that I have kept in contact with, YOU know that you are key to me being the person I have become.
Here's to the current crop of youngsters doing the same. And advice to them as they giggle at these photos from 1979 - yes, you too will look different when you reach your 30th reunion...trust me!

Considering how to deal with the lifetime of stuff?

If you are one of the many adult children out there, you may be considering what will happen when it comes time to handle your parents' possessions as they get older or die. I heard of a book the other day that offers some guidance on this topic:
The Boomer Burden: dealing with your parents' lifetime accumulation of stuff, by Julie Hall. You can check to see if it is in your local library at this WorldCat link:

http://www.worldcat.org/title/boomer-burden-dealing-with-your-parents-lifetime-accumulation-of-stuff/oclc/185033318&referer=brief_results

Here is a description of the book from its Amazon link - you can check customer reviews on that page as well:
"A practical guide to advise Baby Boomers how to deal with the daunting task of facing a parents' eventual passing as it relates to residential contents, heirlooms, and the often difficult family interactions and feuds that accompany them.

With fascinating stories and comprehensive checklists, professional estate liquidator Julie Hall walks Baby Boomers through the often painful challenge of dividing the wealth and property of their parents' lifetime accumulation of stuff. From preparation while the parent is still living through compassionately helping them empty the family home, The Estate Lady® gives invaluable tips on negotiating the inevitable disputes, avoiding exploitation from scam artists, and eventually closing the chapter of their lives in a way that preserves relationships and maximizes value of assets."

If you have the chance to bring in speakers for your next cancer support group or conference, you might consider asking Ms. Hall to present - here is her web link:
http://www.theestatelady.com/about_julie_hall.html.

I have friends that are facing difficult situations with splitting up their parents' possessions with siblings, and I would like to lessen the burden for others. This book might be the conversation starter you have been looking for. Face it - we WILL be going through this, either for our own stuff, or our parents, so let's try to make it easier on each other.

May we all have an obituary like this when we leave

Margaret Moth, photojournalist for CNN, died today of colon cancer. Her story is on the CNN site: Fearless to the end: Remembering Margaret Moth
http://www.cnn.com/2010/LIVING/03/21/margaret.moth.obit/index.html

A quote from Christiane Amanpour says it all:
She "led the complete life," Amanpour said. "I don't think Margaret could ever look back and say, 'What if?' She did it to the max, and she did it brilliantly. And she did it on her terms."

Here's wishing that we all do that - live our lives to the max, on our own terms.

If you are or want to be a writer...

My university had a workshop for academic writers today, and I thought the book list might be of interest to you if you are considering writing about your life experiences. Dr. Paul Silvia of the University of North Carolina suggested the titles, and I collected them in this refshare folder: http://www.refworks.com/refshare/?site=037501144987200000/RWWS2AA638028/031610WriteRightNowBookReferences. (I added Dr. Silvia's book to the list.)

You can take the citation information for the books you would like to your local library's website, and see if they have them listed in their catalog. If they don't, you can request them via interlibrary loan - check with your library on this service, and find out if there are fees involved.

Your story is important. Just do it. (With a nod to Nike.)

FDA and the Orphan Drug Act

Story mentions Adenoid Cystic Carcinoma in the March 10th Wall Street Journal: Push to Cure Rare Diseases
http://online.wsj.com/article/SB10001424052748704145904575111943356541152.html?mod=WSJ_latestheadlines

Says the Orphan Drug Act provides incentives for drug companies to work towards treating orphan diseases. Glad to hear there is movement, but I was saddened to be reminded that I (and many others) wear what is termed an "orphan disease". Here's to drug companies going for the tax breaks and developing that therapy for this thing. I know too many people that are in their second or third time of fighting ACC, and they really need a break.

Very last post as a something-something year old Cheeky Librarian

Yes folks, I get to celebrate another birthday tomorrow. Woot! We actually did a pretty good job of it last night and today: dear son took us all out to the HuHot Mongolian Grill where I had grilled veggies until I was stuffed; today dear husband and I had a 'married persons date' by going to the dentist together, then took our shiny white teeth to Red Lobster and had an early dinner (complete with free cheesecake since I was the birthday girl), and a side trip to Dress Barn to see what clothes they have come up with for Spring. All in all, very good times, and I feel very spoiled.
Checking out the clothes at Dress Barn reminded me that I need to get some more sun protection clothes for this summer, as I hope that I will be able to be out in it even more than last year. Coolibar http://coolibar.com/ sent me an email notice that they have a sale going on, in case you also need sun protection. I think a trip to the beach is in my future, so I have been checking out the swimwear http://www.coolibar.com/women-s-swimwear.html.

You can save sperm, eggs, and now - your voice?!

Back in 2009, Roger Ebert put on his blog his frustration at not being able to talk to get his message across (I found the blog entry at the time while experiencing my own lack of voice): Finding My Own Voice http://blogs.suntimes.com/ebert/2009/08/finding_my_own_voice.html. In the post, he described finding a company, CereProc (http://www.cereproc.com/), that seemed to offer a solution to his problem.
My mom told me that Roger Ebert went on Oprah today and talked, using this technology. How cool is that?! They were able to recreate his voice to speak the words he typed, thanks to the hours of recordings he had made as a film reviewer over the years. More information on the Oprah episode with a video link are here at the Washington Post: http://www.washingtonpost.com/wp-dyn/content/article/2010/03/02/AR2010030202326.html.

Not many of us would have such a voice reference library if we lost our voices suddenly due to accident or disease. Maybe, just maybe, if one knew that losing their ability to speak is a distinct possibility, one could contact CereProc and 'store' a recording to be used later if speech disappeared. I don't know if CereProc has such a 'voice bank', but after last summer, I will probably be contacting them to see if I could be their guinea pig. If I ever lose my voice again, I want to be able to tell someone someday to kiss my left hind leg with all the inflection and emotion I had when I could speak...

Visit to the dentist

If you have had radiation to your head, or a parotidectomy (both of which can lessen your spit production) you REALLY need to stay friends with your dentist. The goal for me is to NOT have any teeth pulled from now until death, and I am proud to say that I have met that goal. However, while there is no decay to my choppers (flouride soaking trays, Biotene toothpaste, staying away from starchy/sugary foods as much as possible), I still have the teeth I walked into cancer-land with, and some of them have structural issues. One is about to be crowned (oh goody), but I know that will result in a better outcome than waiting around for the thing to break. On the good side, my dry mouth (xerostomia) seems to be getting better - the hygienist commented on my spit production while cleaning the teeth. I am nearly 3 years out from surgery and radiation, so maybe some of the tougher side effects are lessening.

Information links on cancer and how dentists can be of help to you if you are facing treatment now or have had it in the past:

Oral Cancer page at the American Dental Association: http://www.ada.org/public/topics/cancer_oral.asp (Note: my Adenoid Cystic Carcinoma wasn't technically 'oral cancer', but my dentist did see the signs of it way before any other doctor would have listened. Thanks to my dentist, I sought treatment earlier.)

Three Good Reasons to See a Dentist BEFORE Cancer Treatment, from the National Institute of Dental and Craniofacial Research: http://www.nidcr.nih.gov/OralHealth/Topics/CancerTreatment/ThreeGoodReasons.htm

Xerostomia information for dentists, from the Oral Cancer Foundation (share with your dentist): http://www.oralcancerfoundation.org/dental/xerostomia.htm

Those noisy MRI scans may be replaced by blood tests soon

If you too have head/neck cancer, you know the MRI scans I am referring to - inside the noisy tube, listening to the magnets dance while the experts run the scan to see if you have a recurrence. I think at one point I was getting those about every 6 months (seems they found some interesting things to keep watching in my head, despite what my little brother used to tease me about when we were younger). Now, scientists say that watching for cancer may only take a blood test after the initial tumor's genetic signature has been identified. As reported in Reuters [http://www.reuters.com/article/idUSTRE61H5QR20100218], they used this new process to identify cancer remaining in colorectal cancer patients long before anything would have shown up on an imaging scan. They say the procedure is costly now (hey, I would pay 5 grand gladly to see if anything is floating around), but should be less than an MRI in the future. So far, they have only tested breast and colorectal cancer. I am not sure if Adenoid Cystic Carcinoma would be a good cancer for this test, since it travels the nerves more than in the blood, but we can hope. Now, where did I put that 2006 tumor...

The thrill of social media has brought me out of the frozen silence

It has been a winter around here that would chase polar bears away. The cold and dark have seeped into everything, including my blogging gene, hence the long silence. (Just letting you know that the only big C that I am currently dealing with, as far as I know, is the cold, not cancer.) What finally brought me back to the keyboard was a visit today to a University of Omaha marketing class, where I heard a great speaker: Bryan Jennewein (Director of Social Media at Infogroup). His tips would work for any cancer patients and their families who are considering integrating social media to spread the word about their condition, treatment, and recovery. Some notes that I took:
-use all privacy settings available on social media such as Facebook. If you want only your selected family and friends to read about your cancer experiences, limit the access. If you are doing a fund raiser, maybe you want a new page to announce the event(s), rather than open up your main Facebook page to strangers.
-if you wish to find out your standing in the blog community, you can check it out at Technorati [http://technorati.com], but you will probably have to make a claim on it first through your account. You can also check to see how your blog shows up by searching through Google Blogs, like this one I did for mine: [http://blogsearch.google.com/blogsearch?hl=en&ie=UTF-8&q=cheeky+librarian&btnG=Search+Blogs].
-get others to link to your social media account, if you are trying to get the word out.
-involve your readers by asking for comments (I live by them, folks! It gets lonely out here.), and even holding contests if you can.

We truly aren't alone, but it takes a bit of work to stay connected using every bit of technology available. Thanks for hanging in there while I have been silent - I feel a thaw coming on! Stay tuned...and now, I will leave you with a photo from warmer weather.