Wishing all of us a fully-lived 2012

I hope that 2011 was a full year for you and your loved ones. And I really really wish for us all to be around to see December 31, 2012 together. Unfortunately, I know of too many that did not get to see this day due to their cancer's progression, and I figure it will be the same next New Year's Eve. If my blog is of any good in this world, I will continue to record items in the news about Adenoid Cystic Carcinoma in the hope that sharing our stories will further interest and financial support to study and cure this rare cancer. Plus, as a Cheeky Librarian, I want our own stories archived for others to see and appreciate the strength and honor told through the words. To you, ACC-wearers, as a fellow wearer of this cancer I salute you and all of your efforts, no matter how big or how small they are. To you, friend or family member of someone that wears ACC - I salute you for your steadfast support of the one in your life that is walking this path, as you are more important than science in the fight against cancer. And to all that cheer this Cheeky Librarian on daily through emails, in-person conversations, or even just smiling at me in the hallway: THANK YOU! Happy New Year, everyone.

Adenoid Cystic Carcinoma in the news

I saw this news story at examiner.com: Crossing the Atlantic Ocean for a life saving cure. http://www.examiner.com/restaurant-in-baltimore/crossing-the-atlantic-ocean-for-a-life-saving-cure
It appears to be an entry for Christopher L. Lyles to the Examiner.com's America Inspired contest. From the article: "Chris was diagnosed with Adenoid Cystic Carcinoma (ACC) after his 30th birthday and became the first person to get a trachea [sic] transplant using his own cells.He has used his cancer to bring awareness to cancer patients who need life saving treatment; but, his health insurance will not cover it."

Mr. Lyles is truly breaking new ground with his tracheal implant - here are additional links to news surrounding the procedure:

Local man travels to Europe for life-saving operation
http://www.wbaltv.com/r/29778764/detail.html

Nanofiber Solutions plays key role in world's first synthetic tracheal implant made from Nanofibers
 http://techlounge.techcolumbus.org/profiles/blogs/nanofiber-solutions-plays-key-role-in-world-s-first-synthetic-tra?xg_source=activity

Harvard Bioscience's "InBreath" Bioreactor Used in World's Second Successful Synthetic Trachea Transplant
http://www.globenewswire.com/newsroom/news.html?d=239295

Artificial trachea created by Nanofiber Solutions helps cancer patient
http://www.themetropreneur.com/columbus/artificial-trachea-created-nanofiber-solutions-helps-cancer-patient/

I wish Mr. Lyles all the best and thousands of days ahead with his daughter. It sounds like he will be the pioneer that others of us with ACC look on in the future with grateful appreciation for his bravery in being the first.

More information about the America Inspired contest: http://www.examiner.com/america-inspired

Adenoid Cystic Carcinoma in the news

Sad news from Whitehall, PA. Julie Duttine died on December 7th. She was a young mom fighting ACC while supporting her son Jaden through his cancer treatment (I posted about them last January). The family asks for memorial donations to the Children's Hospital of Pittsburgh or to St. Gabriel's School. My deepest sympathy goes to her family during this very sad time. Julie's strength was and still is an inspiration to me.

Congratulations, Jeffrey Kaufman of the Adenoid Cystic Carcinoma Research Foundation!!

I just saw an announcement from the National Institutes of Health that Mr. Kaufman, of the ACCRF, is one of 7 named to the NIH Council of Councils: http://www.nih.gov/news/health/dec2011/od-19.htm

From the announcement:
"The National Institutes of Health today announced the appointments of seven individuals to the NIH Council of Councils. The council was established to advise the NIH Director on policies and activities of the Division of Program Coordination, Planning, and Strategic Initiatives (DPCPSI), including making recommendations on research that represents important areas of emerging scientific opportunities, rising public health challenges, or knowledge gaps that deserve special emphasis or would otherwise benefit from strategic planning and coordination.
The council is composed of 27 members nominated by the NIH Institutes and Centers (IC) and from the Council of Public Representatives, an advisory committee to the NIH Office of the Director. Council members bring knowledge of their individual IC’s missions and operations, not as official representatives, but to provide advice beyond the research agenda of any individual IC.
"The breadth of expertise brought by these individuals will enhance the council's ability to achieve its mission by offering a diversity of perspectives and talents. Collectively the council will inform our approach to selected trans-NIH research initiatives." said DPCPSI Director, James M. Anderson, M.D., Ph.D."

I know Mr. Kaufman will be in the right place to bring our rare cancer into some very important conversations and planning sessions, and I thank him for his service!

In addition to having this "six degrees" connection to the NIH Council of Councils - I know another name in the seven: Joyce A. Mitchell, Ph.D. I was fortunate to work with her team at the University of Missouri-Columbia, and know her to be a major 'mover and shaker' in the health care world. Go Dr. Mitchell, go!

Big day for me and dear husband

Today is our anniversary. 27 years ago, we stood in front of a few family and friends and pledged that we would be there for the other one, in good times and bad. Boy howdy - have we ever! Sending happy day wishes to that man that has stood by me and that I have stood by him through the years. They have all been good, hon.

Here's wishing that everyone reading this has someone special in their life, including and especially themselves.

Adenoid Cystic Carcinoma in the news

I saw this great story in the Oakdale Leader, by Kim Van Meter:
Make-up with a mission http://www.oakdaleleader.com/section/53/article/6102/
It is a story about how a fellow ACC wearer, Mary Carey, overcame cancer treatment issues and their effect on her appearance with the help of her talented niece, Vena Hudgins. Ms. Hudgins has plans to help other cancer warriors with once a month classes.

My medical center, and probably one nearby you if you are interested, has a regular workshop called Look Good... Feel Better. Here is the homepage for that program: http://lookgoodfeelbetter.org/.
I once made an appointment to go to a workshop, but chickened out when the person on the phone didn't know if the makeup techniques would work on radiated facial skin. The program is known for lifting spirits and renewing confidence of women with cancer in other areas of their body - asking them about techniques to apply makeup to previously-radiated skin kind of tripped them up. I was never one to use makeup all that much before 2006, but I would like to be a hottie for my dear husband occasionally, and I am still very much in public with my presentations and classes.

I plan on getting in touch with Ms. Hudgins to see if she has some tips on locating makeup that goes on and comes off my radiated skin without pain. If you have some tips to share, please leave a comment - I can't be the only one dealing with this issue, and your words could help many others.

Recent message from ACC Artists for A Cure

I mentioned before on this blog about ACC Artists for a Cure - I had learned of it last spring on Facebook -  and received a recent comment to the original post linked here.

I am repeating the comment on today's post, so you can know that it is a vital developing group. I look forward to following their fundraising efforts, and to passing along the new site's information to you when they complete it.

"Thanks for your review of the ACC Artists for a Cure website and for your very thoughtful comments. The idea for the Gallery came after I embarked on developing my own website, and I've always been self-conscious that the ACC AFC Gallery was just a page there. That site also has several shortcomings, as you point out...we are developing a new site, just for the Gallery, though! The intent is to have a much more accessible and use-friendly site that gives our artists more exposure while we feature their work. The Gallery itself has not raised money. It's just not set up to do that, but the artists are interested in raising awareness about ACC and donating funds to ACCRF through the sale of their work. The proceeds donation mentioned on the current site are from my own sales...and so far, I've given 100% to ACCRF. It is a super organization! People who buy my work can be sure pretty much all of the proceeds will go there, if not all. I have a dear friend who was diagnosed with ACC in March of 2009, and while he is in remission, I've met many ACC patients since...I've become very interested in helping this community to support my friend and other ACC patients and their families. The Gallery is still developing...we have four members now, but we also have other artists who want to contribute. So in the end, we should have quite a diversity of art forms, which will mostly do what art does for people...speak to them of spirit and community. That's the idea, basically. We hope one day to have an event where we can actually raise money as a group, and we are making progress. Again, we do so appreciate your comments and would very much welcome your ideas as we bring the new site on line and work on it further. xo, Edith Thompson "

The long quiet - all is better now

I had about 10 days of bronchitis - first time for that particular ailment, and I sure hope it is my last. Something about coughing hard enough to want to retch... oh yeah, and that plays havoc with all those radiated muscles up in my head/neck area, don't it. I am well enough now to be cranky about it, so, as the dear mister says, I am well.
I will now get back into the ebb and flow of blogging.

Catching up

I have some "ACC in the news" posts to add to this blog - there has been a lot of activity in both the personal and research side of this cancer in the news. But first I wanted to catch readers up with how my annual scan dancing went.
The MRI went ok - if I was the type to leave my eyes open when I go into the tube, I might see the initials of all the others that have gone before me (yes, I am joking - you can't raise your hands to add graffiti - they have a rule, and confiscate all Sharpies). Hollywood just doesn't show MRIs the right way, or at least none of the MRIs I have had. Everytime, I have to have my head held securely in a frame, which is why I ask for a washcloth to be placed over my eyes to cut down the chance that I will get claustrophobic even before they move me into scanning position. I never see the frame holding someone down on TV shows. Maybe I need to ask more questions as a patient?!

At the annual head/neck visit, I got the news that the scan was clear of any new disease, and conversation drifted around to when the last time I had a chest X-ray. (ACC generally comes back as lung mets, with liver and bone mets distance chances after that.). It has been a few years, since the last time I had the X-ray they had me do a CT to look closer at a suspicious something which turned out to be nothing that needed treatment. I said I really didn't want to get a chest X-ray, and then let the doctor talk me into it (note to self - DON"T DO THAT AGAIN, follow your gut). The next day I was at work, and had a voice mail from the case manager nurse asking me to call back. Hmmm. Called her while at work (note to self-DON"T DO THAT AGAIN, go someplace private. You have a cell phone now, for Pete's sake). A phrase in the conversation stands out in my memory - "they found a shadow". Sucking air, I said, 'they have found something before - is this the same something they investigated before?" She said they seemed to think it was new. Think of all four-letter words-most of them were going through my head as I stood in my office in that grand library where I work. CT was called for, ASAP. Ok, I can do it Friday afternoon (this was Wednesday). I texted dear husband that nurse had called with not so good news (he can't get phone calls during the day), and miracles of miracles he appeared in my office with a much-needed hug. Tears of anger and dissapointment had appeared - I have been really hoping that lung mets don't show up for about 5 more years. (ACC is a different critter - you can live a long time with lung mets, unless they block a breathing hole, so having them show up isn't the total end of the world, but remember that I don't even like ticks, so additional tumors that start slowing me down will be most unwelcome.) I still had a lot of day left to serve at work, so I tried to shake off-swallow any feelings of 'poor me' and get back to promoting our great services and resources to the very health professionals and students that have or will save my life (remember, I am living my advice from an earlier post: seriously, Cheeky Librarian, hold it together).
Harder to call my mom later in the day to say 'they found a shadow and I have a CT scheduled'. As a retired med-surg nurse, she gets the double-whammy of news like that, first with it being her child, then knowing what might be around the corner. She is the one that schools me in waiting for actual news before freaking out, though I think we were both just saying words that we didn't believe.

Did the second scan (third, if you count the X-ray), and thank the sky above that the case manager called me that afternoon to say initial reports looked like there was no evident disease, but final word would be after the Tumor Board met Monday. Tumor Boards are cool - many professionals look at a case and weigh in on it, so there is less of a chance of one doctor missing something that needs to be taken care of (good blogger description here and from a med center blog here). Didn't matter, and still doesn't matter if they call for surgical treatment for my ACC if it mets to the lungs - there isn't much if any evidence that surgery or any type of interventional radiology works to stem the tide of slow-growing tumors. I have been pretty emphatic on that point - mets outside of the head area probably won't be on my list of things to treat, other than changing lifestyle (as in, 'going to live on the beach'). The only reason I go back for annual head/neck checkups is so they can make sure that nothing is growing back in either of the sites-my cheek or my temporal area. Please consider me a conservative patient - I won't be coming and saying "do anything" - I have seen what 'anything' looks like, and don't want to sign up, thanks. (My cancer, I get to handle it my way. I will fight for you to handle yours your way, honest.)

Number one son, number one daughter, and Lucky the Dog

Final word was - Tumor Board agreed that no treatment needed at this time, and I struggled to get back to caring about regular life again. Moved faster on cleaning out crap in the house - didn't and still don't want my family to have to go through boxes of 'why did she save this?' if I shuffle off this mortal coil faster than I thought I would be doing. Work - going fantastically, and plenty of it. Family - wonderful, looking forward to the upcoming winter when we are once again locked inside together for months on end. All of the drama surrounding ACC is pretty much over before it began, but I am very glad the doctor already said no MRI is called for next year. I am sitting out future scan dances for a while - the heart and stomach just can't take it.

Assertive Cancer Patient is in the news!

Jeanne Sather, of Seattle, WA, and author of the Assertive Cancer Patient blog [ http://assertivecancerpatient.com ], is featured in this recent story in the Seattle Times:
Breast Cancer Patient Gets Drugs Closer to Patients
http://seattletimes.nwsource.com/html/localnews/2016265548_survivor21m.html

The story covers her work to get TDM-1 administered closer to her home, rather than traveling thousands of miles to take part in the clinical trial that is investigating the drug.

Adenoid Cystic Carcinoma in the news

I should have called this post "living life despite cancer". Saw this in today's news, and got pretty hot about it (but I think that is the mission of the Daily Mail - excitable tabloid journalism):

"inspiring or irresponsible? Melanie has terminal cancer yet determined to start a family she chose to get pregnant"
http://www.dailymail.co.uk/femail/article-2034881/Inspiring-irresponsible-Melanie-terminal-cancer-determined-start-family-chose-pregnant.html?ito=feeds-newsxml

Melanie's and her husband's story has been linked to before in the Cheeky Librarian:
http://cheekylibrarian.blogspot.com/2011/07/adenoid-cystic-carcinoma-in-news_19.html

(and I am still asking you, my readers, if she is the first woman with ACC to be pregnant - I don't think so, but let me know.)


Quote from the Daily Mail's story: "How long will Melanie have with her children? Will Charlie become a widowed single parent?" And further down, "[...] Melanie and Charlie planned this pregnancy fully aware that Melanie's life expectancy  could be as little as ten or 15 years."

Eyeballs are rolling here. With logic such as that produced in the article, no one should have babies, as none of us know if we would become widowed single parents (people are struck down with much more than cancer, really - motorized vehicles and slips in the shower, for example). My husband and I had 2 children while he was in the Army - what were we thinking??! Being a responsible parent means that you plan for the unexpected (life insurance, adequate education for both parents,  family/friends support). The author of this article might as well write about how shocking it was that ANYONE had children back in the 1850's, since life expectancy was about 60 for 20-year-olds (according to DHHS figures on this table on infoplease http://www.infoplease.com/ipa/A0005140.html). No one knows what the future holds, and buddy, without someone having kids, there isn't much future. If I followed this author's logic, I wouldn't have moved or done anything since my initial diagnosis 5 years ago. Why start projects? Why invest in my retirement? Why repair my house? I will tell you why - because one keeps on living, with/despite/and past the cancer, until one doesn't live anymore.

If you or someone you know/love has been diagnosed with cancer, please don't let it define you. Yes, you won't be able to get life insurance (if you can, please let me know!), but other things and opportunities are wide open for you. Even (gasp!) creating a family. Go for it.

Time for the annual scanning to begin

Ah yes, that time of year when one allows the health professionals to peer into one's skull, using the top-notch technology and scanning contrast and one honking-big MRI apparatus. I will be experiencing the thrill of chasing my claustrophobia demons (not claustrophobic yet, but another few years of this and I might grow the phobia) at the end of this week, and find out the results (no doubt, alien-free) next week. With any luck, I will be someone's learning subject somewhere - something good should come out of all this, other than what I have personally done to stimulate the healthcare economy in Omaha over the past 5 years. Grateful that I am still casting a shadow and paying taxes - you betcha. Angry that I 'get' to do this annual scanning - you betcha again. Afraid to jinx whatever good luck I have had with the cancer powers - yep, and that is why I will agree to the annual scan a few more years. I saw somewhere (swiss-cheese brain won't pull up the location) that ACC survivors are not considered cancer-free for 20 years. Another 15 years of one MRI scan a year is some serious money - not sure I will be continuing this long-term. I have already nixed the lung x-rays, figuring that my first case of pneumonia will clue the doc into my having grown mets. Also nixed all other scans/tests/whatevers for a woman my age - had my ticket punched, and this is my personal decision to make. If I start growing an extra tumor somewhere else, I doubt that I would sign up for additional treatment anyway, unless it is to whack something off that is causing pain. (Oh yeah, the Cheeky Librarian is a tad tired and cranky today.)

Post-traumatic growth

Defined as "the ability not only to bounce back from adversity but also to flourish", post-traumatic growth is the topic of this CNN Health article:
"Steps to help you thrive in hard times"
http://www.cnn.com/2011/HEALTH/08/24/thrive.in.hard.times.enayati/

Since I just spent tens of hours welcoming new students to their health care professional education experience, I understand and look for resilience in others, as well as myself. The book mentioned in the article is titled just that: "The Resilience Factor", by Reivich and Shatte.

Emotional intelligence, or the art of keeping it together no matter what

I saw this on CNBC, and thought it applied to going through life with initial stages of cancer:

One Thing the Boss Appreciates More Than Being Smart
http://www.cnbc.com/id/44230002

I am in no way suggesting that melt-downs or anger or frustration won't bubble to the surface during the bad times (or, as I found out, after the bad times are pretty much over and one has to resume normal life, when nothing is normal ever again). Generally, I was able to move away and be private for those moments (a few were saved for my extra-special caregivers, but they were pretty savvy and didn't give me much drama time. After all, they were going through crap too, just different levels.)

I am suggesting that one might want to follow the advice in the last line whenever possible:
"Seriously, dude, hold it together." 


Even in the darkest times (still have them, plan on more when/if cancer comes back), there are opportunities that come up that I would miss if I was 'losing it'.  While I count on those around me to put up with me, no matter what (ah yes, unconditional love-what a goal),  folks (family, caregivers, health care professionals-they are all human too)  just wouldn't find it positive to hang around very long if I was constantly losing my temper or cool or whatever you call 'it'.

Also found this Yahoo link along those lines, in case we want to start a discussion about  tv characters offering a foil or at least a model of what to do/not to do when faced with cancer:
Coping with Cancer: How 4 TV Characters Reacted When They Were Diagnosed
http://tv.yahoo.com/news/coping-cancer-4-tv-characters-reacted-were-diagnosed-222800419.html

Feel free to comment and tell me I am all wet, or if I have some valid points. I am up for it.

What has the Cheeky Librarian has been up to lately?

I have had 3 goals during these summer months:
1. survive the heat
2. go through and get my house in order
3. support number one daughter in her flight to Europe for an exchange program

I think I have managed to do all three, though none are officially completed yet. Tonight's temps are due to be in the low 60's (amazing!). I have disposed of about 7 large bags of items out of my house (maybe taking me off the next season of Hoarders, but still not done yet), and number one daughter still has a month to go in her overseas studies.

It has been nice to have non-cancer-related goals to aim for, and I have relished the experience. The time for me to shove my head in an MRI tube again is right around the corner, but I am not expecting any aliens to be identified in my skull (but I am not the expert on that subject, am I). At the moment, I am seeking new goals for the colder months, in addition to my efforts to keep my head warm with fashionable headgear to fight the pain.

Here's my wish that your summer has been a great one!

Adenoid Cystic Carcinoma in the news

Update on the benefit held for Gary Eccles (Illinois - mentioned previously in this blog here) on Saturday:
Big Peru crowd supports Peru firefighter Eccles
http://www.newstrib.com/articles/news/local/default.asp?Article=6C780FBEBD184DFCA80AB9F59A60A6DD238609483E9B1E49

Update on fundraiser for Melanie Jaggard (Abergavenny, Wales - mentioned previously in this blog here): Ride for cure for Abergavenny mother-to-be with cancer
http://www.bbc.co.uk/news/uk-wales-south-east-wales-14436356

From the Phillipines:
Man with malignant tumor needs help
http://newsinfo.inquirer.net/34549/man-with-malignant-tumor-needs-help

Adenoid Cystic Carcinoma in the news

Great quote from Peter Tork
When the Burlington Free Press (Vermont) asked Mr. Tork how having Adenoid Cystic Carcinoma had changed his life, he replied,
"None, zero, zip, zip-a-dee-doo-dah. If it took cancer to change my view of life, then my view of life was not very solid beforehand. I’ve been blessed to have a philosophy that didn’t need to shift."

You can read the full interview here:
Hey, hey it's The Monkees' Peter Tork
http://www.burlingtonfreepress.com/article/20110728/ENT/110727020/Hey-hey-s-Monkees-Peter-Tork?odyssey=nav%7Chead

Adenoid Cystic Carcinoma in the news

2 items located in the news -
From the UK - Michaela Davis is raising money for ACC as a tribute to her stepdad, Keith Bunton, who was just diagnosed with Adenoid Cystic Carcinoma this past September:
Colchester schoolgirl's cycle tribute to cancer victim stepdad
http://www.gazette-news.co.uk/news/9155790.Girl_s_cycle_tribute_to_cancer_victim_stepdad/

(Maybe because I am forever curious in all things geographic, I looked up the location of Colchester - it is in Essex.)

You can check out their Facebook page here. And the direct link to her fundraising page at JustGiving.com is:
http://www.justgiving.com/michaela-davis0
--------------
I found this July 15th story - if I have posted it before, blame the swiss-cheese brain, please.

A benefit for Gary Eccles, retired Peru, IL firefighter, is set for August 6th:
http://www.newstrib.com/articles/news/local/default.asp?article=28560&aname=Gary+Eccles+benefit+set+for+Aug.+6

They have a Facebook page here.
from the article: "Donations can be mailed to Peru Fire Department, 816 West St., Peru, IL 61354. Make checks payable to “Gary Eccles” and write “fundraiser” in the memo line."

Adenoid Cystic Carcinoma in the news

Congratulations go out to a fellow ACC warrior Melanie Jaggard and her husband, Charlie, who are expecting twins! Yay! Good news!! From Wales Online:
Young woman with rare form of terminal cancer due to give birth to twins
http://www.walesonline.co.uk/news/wales-news/2011/07/19/rare-cancer-woman-will-be-first-sufferer-to-give-birth-91466-29078429/

But I do ask you, dear reader, if you have information to assist with what the reporter, Simon Gaskell of the Western Mail,  and Mrs Jaggard says later in the article:
"But after searching endlessly to find a precedent for their circumstances they drew a blank, leading them to believe Melanie is the first-known ACC sufferer to become pregnant.

“We can’t find any other person with a history to see what may or may not happen,” Melanie said.

“I didn’t want to get pregnant if there was any evidence it would have a negative impact on the twins or a negative impact on my health because there was no point having a family if I couldn’t see them grow up and support them and the rest of it.

“The doctor said: ‘From a human perspective I can’t give you any evidence it might have a negative impact. If you want to have a family and get on with life, go for it’.”

Read More http://www.walesonline.co.uk/news/wales-news/2011/07/19/rare-cancer-woman-will-be-first-sufferer-to-give-birth-91466-29078429/#ixzz1ScWo5aff

Update - located another story on the Jaggards here: http://www.southwalesargus.co.uk/news/9147022.Gilwern_woman_with_terminal_cancer_is_expecting_twins/

Donate to their fundraiser here: http://www.justgiving.com/charliejaggard

Cheeky Librarian here again - as for my becoming pregnant after ACC diagnosis, the only thing that kept me from doing it was my impending 50th birthday. All my parts are still in working order, no matter what ACC is or isn't doing currently, so in theory (and if the power that moves the world has a huge, really huge, sense of humor), I could have a baby (gulp!). Since I have annual massive medical charges for scans (massive to me-everything is relative, boys) and trying to save for a retirement that may not actually take place, deciding on purpose to bring a baby into the household is not my first choice. But I bet that there are folks that have had babies during or after their initial or subsequent diagnoses. If you know of someone, or are someone, please leave a comment. If anything, to let Mel and Charlie know that their leap forward to grab life by both fists can have a very happy ending.

Adenoid Cystic Carcinoma in the news

Article published July 16th in The Jamestown Sun - "JHS sophomore fights rare cancer"
http://www.jamestownsun.com/event/article/id/140122/

Mackenzie Gerszewski was diagnosed with ACC on May 7th, and had surgery to remove the tumor, upper jaw, and palate. She is about to go through radiation treatments. The article announces the benefit hog roast and auction to be held tonight from 4-8pm at St. John's Academy. If you can't attend, but want to donate to help with medical bills, send me a comment and I will give you a phone number to call.

I sure hope the benefit pulls in lots of funds to help the family with the medical bills, and that Miss Gerszewski has the best care ever in order to heal up.

Caveats for gene-based cancer research

I posted earlier this year about a success story from San Antonio where they used genetic testing on one ACC warrior's tumor to customize treatment protocols, and evidently experienced reduction in tumor size: Genetic tissue testing leads to 'personalized' cancer treatment.

The New York Times has a July 7th story about genetic cancer testing programs today - and how they have not held up to scientific standards: How a Bright Hope in Cancer Fell Apart.
A chilling quote from the story: "... as patients and their doctors try to make critical decisions about serious illnesses, they may be getting worthless information that is based on bad science."

If you or anyone you know is exploring this type of personalized treatments, please continue to ask questions about the science behind the tests they use. As special as we are, we deserve the best science.

Getting your official life in order before you die

Yeah, I said the three-letter word. Because we all have to deal with it, and the favor we can grant our survivors is to have our papers in order. (Now, when someone reads this after I have shuffled off the immortal coil, they will know the irony of my posting this information - IF I didn't follow the advice I have received today).

I saw this article in the Wall Street Journal:
Designing your death dossier - 25 documents you need before you die
http://online.wsj.com/article/SB10001424052702303627104576410234039258092.html 

I am currently going through our papers and STUFF, coming to grips with the fact that items that hold potential collectible value are in reality decades away from being showcased on The Antiques Roadshow, and shredding/tossing/unloading. Pretending I am looking at someone else's stuff, and chucking it. At the same time, getting the important papers together so those unlucky enough to be tasked with tying up loose ends after I am gone can figure out what off-shore accounts they should cash in first (heh - that is a sarcastic joke, in case you are with the revenue service).  Number one daughter has left the country for international schooling, and while she and number one son are mostly out of the house, it is time to move it-move it-move it (said in the great Sgt. Carter's voice from the tv show, Gomer Pyle, USMC).

If you have the power to send strength and stamina through the Interwebs, please funnel some my way! And if you are joining me in this effort, let me know how it works for you. 

Adenoid cystic carcinoma in the news

News about Pfizer funding research on how its drug, Axitinib, affects cancer through the National Comprehensive Cancer Network, including adenoid cystic carcinoma:
http://www.businesswire.com/news/home/20110705005836/en/Researchers-Receive-Grants-NCCN-Oncology-Research-Program 

Sites that were awarded, and type of cancer studied (links to these centers and names of researchers are in the article above):
-Memorial Sloan-Kettering Cancer Center (ACC)
-Roswell Park Cancer Institute (advanced melanoma)
-H. Lee Moffitt Cancer Center & Research Institute (advanced carcinoid tumors)
-University of Michigan Comprehensive Cancer Center (head/neck cancer)

Other studies on this drug in the Clinical Trials database:
http://clinicaltrials.gov/ct2/results?term=axitinib

Research published that mentions the drug name and/or number:
http://www.ncbi.nlm.nih.gov/pubmed?term=axitinib%20OR%20AG013736

Mention of the drug in financial news:
http://search.cnbc.com/main.do?target=all&keywords=axitinib&categories=exclude

The search function on the FDA drug site didn't retrieve anything-but Pfizer has gone for approval, based on its performance on renal cancer:
http://www.fda.gov/Drugs/default.htm

Good goal, weird place to have the recruiting, IMO

In my opinion (IMO), more people should sign up for long term studies on healthy living. Following humans (usually a set group, like nurses http://www.channing.harvard.edu/nhs/) generally results in observations that others can use to improve their own lives.

So I was excited to see this headline:
 Relay For Life seeks committed research subjects (from The Free Press http://mankatofreepress.com/latestnews/x1692752295/Relay-for-Life-seeks-committed-research-subjects). The American Cancer Society is recruiting 500,000 volunteers for its Cancer Prevention Study 3. Cool - they plan on following up for 20 or 30 years - this cancer warrior will gladly sign up for that. Then I read the following:

"Participants must meet a few requirements. In addition to completing a short survey at the event, participants must be willing to complete periodic follow-up surveys. Also, they must never have been diagnosed with cancer (not including basal or squamous cell skin cancer)."

Ohhhh. They are aiming for the families and supporters of cancer survivors/patients that have died - the ones that have been diagnosed already need not apply. Kind of bloodthirsty, but makes sense (after all, the term "prevention" is in the study of the title). But how about using the Relays and Walkathons to recruit the 12 million or so of us that have been told we have cancer for one or more of the ongoing studies (like at the CDC http://www.cdc.gov/cancer/survivorship/what_cdc_is_doing/brfss.htm). Put me on the mailing list - not sure I would answer a phone survey cold, but if I knew questions were coming, I would be forthcoming.

And this goes out to ACCOI and ACCRF- I hear that there are reunions of ACC fighters coming up in the months ahead (you can see the 2010 gatherings here). I sure hope someone is passing around a survey or two to this focused group of people, to the ones that attend and those of us that cheer from the sidelines. We are such a small group, it would hardly make anyone's Excel software breathe hard to gather all of us in one file.

If you or a loved one is newly diagnosed with Adenoid Cystic Carcinoma

I am glad that you found this blog, but so 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 action you can take at this time, since you need to concentrate on getting healed up and staying strong. Increasing your health literacy is very important.  Please contact your local library (could be a public or medical library) that serves consumer health information, and have them do information 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' unique 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 or your loved one's conditions 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 can 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 - click back to the Fall of 2006 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. And please let me know your story - I will share it with others that read this blog. 

Wishing the Monkees a great show tonight at Harrah's Stir Cove in Council Bluffs

I would love LOVE to be attending tonight, if anything to cheer on a fellow ACC warrior who has jumped back fully into his life (Peter Tork) - but it is not to be. I hope they have a better time of it on the banks of the flooded Missouri River than they did up in Minnesota (faced both a government shutdown AND a thunderstorm there). I imagine they will have a book's worth of stories by the time their tour is over this year. Cheering you all on from Peony Park neighborhood in Omaha, guys. Thank you for making the world a better place through your music and talents. And an aside to Mr. Tork - keep on keeping on. 

In case you can get to the show, here is the ticket site: http://www.harrahscouncilbluffs.com/EventsDetail.do?detailName=the-monkees-detail&locationCode=COU

Let me know how great a time it was, ok?

Marked the 5 year mark in my own way

I know - I wasn't going to do much, since it isn't a 'real' date for me (5 years out of cancer treatment does not mean you get to consider yourself in remission with ACC - let's be realistic about that), but I felt like marking a date anyway. Purchased breakfast sandwiches at Jason's Deli (I thought they were over-browned, but folks voiced their appreciation at work - I work with a lot of really great people!) and brought them in for a morning treat. Original intent was just to say it was celebrating summer, but I was outed by a colleague who let folks know that I was 5 years out. She even went and bought me roses as a congratulation/celebration gift - my whole office smells wonderful!
Number one daughter is getting ready to head overseas for language immersion study, and number one son is working a lot of evening hours, so it will be just me and the mister to go out whenever we can get out. He works every other weekend, so doesn't get off this week until Monday. We shall see if we can sneak out for a lunch together at the local HuHot Mongolian grill (ah, grilled veggies - the other steak meat).
5 years. Time marches on. Here's to many more years for us all, and every day filled with moments to cherish. At this very moment, Lucky the Dog is barking for a treat, so the bellybutton contemplation time is over.

Adenoid Cystic Carcinoma in the News

Just saw this column by The Rev. Paul E. Grabill in the Centre Daily Times of State College, PA:
Looking Toward Heaven With Love
http://www.centredaily.com/2011/06/18/2784555/looking-toward-heaven-with-love.html

In the column, The Rev. Grabill says it may be his last, as he has been told he doesn't have much time left due to ACC mets from his original diagnosis and treatment of 7 years ago. A great quote in the column is: "What has been overwhelming to me... has been the love and kindness of others, including thousands who have been diligently praying for my healing." Add the Cheeky Librarian to your list, Rev. Paul. I am pulling for you, too.

Read more: http://www.centredaily.com/2011/06/18/2784555/looking-toward-heaven-with-love.html#ixzz1Qg03qonO

Coming up on the 5th year since original diagnosis

Yep, that supposedly-magical 5 year mark will happen next Thursday, right in the middle of our summer education push for the new M3 students before their rotations begin. That is how it happened 5 years ago, too - and I still owe my colleagues at work for taking on my duties as well as their own that year.
I am not going to mark the 5 year anniversary for anything special like "I'm cancer free" (I know I am not-just no evident disease [NED]); or "the rest of my life can now begin" (I have kept living and loving life through all of this crud, thanks to some of the strongest people I know: my family and friends); or even "look at me, I have lived another year without being in treatment" (well, I might mark this as another year without treatment-but I would rather mark a year where my 401k has doubled, or that I have been allowed to purchase life insurance again in order to set up an endowment for a library or two or three). I figure if I did mark the event with some big party, it will turn out to be a Bridge of San Luis Rey moment, and I will be struck down with a tumor or heart attack the week after (yeah, the ol' evil eye theory of living carefully, I suppose.)  I may bring some cake or donuts in next Thursday at work as an offering for those that I work with and drive crazy every day of the year - heck, we should all do that once in a while, admitting that as humans we can sometimes be difficult to live/work with. Sometimes... only a few times...maybe once in a blue moon-times. But it won't be a happy 5th anniversary, just a happy-summer-day-and-so-very-glad-I-get-to-share-it-with-you type of event. Then I will take my long-suffering husband (who knows he is darn lucky to have chosen a long-suffering wife) out for some sort of dinner or brunch later in the weekend.
For you, dear reader, I thank you for reading this blog, whether it is your first or umpteenth time, if you are new to my crowd or have been by my side since 2006. Here's to many more years for us all - there is way too much fun to have and information to share to sign off now. (I welcome arguments to the contrary in comments, though - whip them on me!)

Adenoid Cystic Carcinoma in the news

An ACC warrior who is also a father discusses his life as a single dad in this story from the UK Midlands paper: Sunday Mercury http://www.sundaymercury.net/news/midlands-news/2011/06/23/father-s-day-real-life-the-dad-fighting-cancer-for-the-sake-of-his-little-girl-66331-28900622/

I am saddened to read that he is still waiting for additional radiotherapy - waiting for treatment is generally how things are done in the NHS when it comes to ACC treatment, from what I have learned from fellow ACC warriors in the UK.

Previous story about the dad and daughter:

http://www.sundaymercury.net/lifestyle-news/wonderkids/2010/04/11/i-thought-my-wonderkid-summer-wilde-was-going-to-lose-both-her-parents-n-66331-26211042/

Summer and her dad are featured in a photo on this page: http://www.sundaymercury.net/lifestyle-news/family-news/2010/07/04/sunday-mercury-wonderkids-celebrate-at-drayton-manor-park-66331-26783561/

Yes, Virginia - there really is a Cheeky Librarian

Since the originators of blogs have come into suspicion (a la "The Daily Show" in this clip: http://bit.ly/mctK3J  ),  I thought my readers might want to know that there really truly is a Cheeky Librarian behind this blog. The photo at left was taken at my computer workstation in the library. If that doesn't do it for you, the photo at right was taken at a wedding I attended last Saturday night in Missouri. Pretty much this should prove that I am not a middle-aged guy trying to work on your emotions with stories about a rare cancer. Rather, I am a middle-aged librarian trying to get you some information on the rare cancer, Adenoid Cystic Carcinoma, as well as coping tips from others with head/neck cancer.  I have been contacted in the past by folks that I suspected weren't real, based on the messages that they sent. I know of at least one fellow blogger that was taken in by a highly-involved fake cancer author, and since that time most of us that run this type of blog are very suspicious when someone writes about a heart-rending story. Find out who you are dealing with, the same as anything else on the web (or in life, for that matter), before you start expending emotional energy taking on someone's story. There is a type of person out there that feeds on emotion of others - yeah, I know it sounds like a Star Trek episode, but they are there. Guard yourself and stick to the facts until you really REALLY know your contacts, whether or not your story includes a disease like cancer. This type of person likes any kind of angst - military mom, parent of a special needs child, lonely soldier on the front lines, teen questioning life - and will get on your good side to suck up your emotion-filled story. A true friend won't be criticizing your story or sending you emails saying, "tell me more about how bad you have it", or some similar line of crud (and I have received emails criticizing me for not giving more of my personal emotion in this blog, believe me).  Be safe out there, and network with the folks you know share your path.

What to say and what not to say to someone who is sick

Courtesy of The New York Times, Bruce Feiler writes about what to say and what not to say to someone who is sick:
http://www.nytimes.com/2011/06/12/fashion/what-to-say-to-someone-whos-sick-this-life.html

Please add to the comments if you have additional suggestions of what you liked hearing or what you hope no one ever says again.

I missed the National Cancer Survivors Day, June 5

I guess I didn't get the email/postcard/Facebook poke about yesterday's events. If you went to something, let me know how it was. Here is a search in Google News on stories written about the day's events all over:
http://news.google.com/news/search?aq=f&pz=1&cf=all&ned=us&hl=en&q=cancer+survivors+day&btnmeta_news_search=Search+News

Since I am not feeling all that inspirational for others, I might have blocked out news alerts about the day, but not sure. I don't think I received anything in any of my network contacts saying that the day was taking place, which either means the ones organizing the 'national' part of the day took a wrong step, or nothing much took place here in Omaha.

No matter. If you have had a health professional look at you and say in so many words, "you have cancer", and you are reading this post, I send you a virtual high-five slap from one survivor to another.

2267 miles

That is the total number of miles the Cheekymobile has driven in the past week. This includes a trip to Sedalia, MO, then to Sherman, TX, then to San Antonio, TX, then up to Muskogee, OK , back to Sedalia, MO, then to Omaha. Yep - this year, Mom and I went to San Antonio for our spring trip. [We drove through Joplin last Sunday before the tornado hit, and were shocked as anyone to hear about it on the news that night. The one that hit Sedalia happened while we were on our return trip. We didn't personally run into any bad weather, and as far as we know, none of our family or friends had damage in Sedalia.]
We had a good time in San Antonio, where the hot weather drove all thoughts of winter away. Floating on the Riverwalk and taking a trolley tour showed us some of the history of the city. We had a wonderful dinner at Bayseas, was amazed by the selections available at the newer HEB Plus grocery store, and an all-too-short visit to the Originals bead store. Mom and I overcame obstacles, related to either biology or geography, and managed to rise above travel difficulties, resulting in a great trip together. Not many people our ages can ride together cross-country and still be on talking terms at the end of the trip! Both of us agree, though - the next trip will be a shorter one.
You can see photos from the trip at my Flickr site: http://www.flickr.com/photos/bibliotek/sets/72157626972338142/

Adenoid cystic carcinoma in the news

Goodyear, AZ has a Cancer Treatment Centers of America - an ACC warrior spoke at a recent celebration there: http://www.azcentral.com/community/swvalley/articles/2011/05/11/20110511goodyear-cancer-survivors-celebration.html. Sandy Willett of Tolleson, AZ has been fighting with ACC for 17 years, and gives an interview on her experiences. 

Neil McKittrick of Needham (Mass?) received an award for his volunteerism, some of which involves fundraising for the Adenoid Cystic Carcinoma Research Foundation (http://accrf.org):

http://needham.patch.com/articles/above-and-beyond-needham-residents-honored-for-volunteerism 

If you are wondering what I have been up to...

This weekend is the Berkshire Hathaway Annual Meeting in Omaha, and I have been playing a bit with the high rollers. One of the members of my family ended up in a photo taken for the meeting blog: http://www.flickr.com/photos/borsheimsjewelry/5670738155/in/photostream/
Yeah, I will let you figure out who and where they might be (kind of hard to find 'where's Waldo' when you don't know what Waldo looks like, huh?) Just letting you know I am less than 6 degrees from Mr. Buffet this weekend, and life is very good.

Adenoid Cystic Carcinoma in the news

Tim Pearson of Glen Innes, New Zealand has died.
http://www.stuff.co.nz/auckland/local-news/east-bays-courier/4937438/Tims-battle-ends
His battle (yes, I will call it a battle) with ACC lasted for 10 years, charted through newspaper stories since 2005. I link to two of them (from 2008 and one from just a year ago) in this blog: http://cheekylibrarian.blogspot.com/search?q=pearson I join others in sending condolences to his daughter Theresa, and if it brings her comfort, I want her to know that her father is recognized as a great man by this fellow ACC-wearer living on the other side of our shared Earth.

Here is an editorial about a South Carolina school class that took it upon themselves to solicit donations to defray costs for Kellyson Swinney Poe's neutron radiation treatment in Seattle: http://www2.scnow.com/news/2011/apr/29/editorial-helping-hands-wilson-high-solicitors-off-ar-1781374/ 
Congratulations on the class' efforts, which I know went a long way to ease the minds of Ms. Poe and her family, letting them concentrate on her care and healing rather than how costs would be covered. Congratulations for those that came forward with a pizza party to reward their efforts - such actions should be reinforced. And congratulations to the individuals in the class, who chose to think of someone else at a time in their lives when that is generally unusual. Students are still accepting donations, according to their school website: https://www.fsd1.net/schools/wilson/Pages/LoveOffering.aspx

Adenoid Cystic Carcinoma in the news

I just saw this article about Katie Easterbrook of Virginia that describes her diagnosis and treatment for ACC and the need for people to get screening for oral, head, and neck cancers:

Oral Cancer Survivor Shares Her Story
http://wusa9.com/news/article/148411/28/Oral-Cancer-Survivor-Shares-Her-Story

Her story is also told in this Georgetown University Hospital news item:
http://www.georgetownuniversityhospital.org/body.cfm?id=15&UserAction=PressDetails&action=detail&ref=228

I wish Ms. Easterbrook all the best, and thank her for sharing her story for such a great cause.

Adenoid Cystic Carcinoma in the news

Just located this news item from last October - and if my swiss cheese brain already posted it here, well fine. A strong lady like Donna Woolum is worth the extra coverage, in my opinion.
From Pal-item:

Sister supportive of Centerville woman who's battled cancer since 1996
http://www.pal-item.com/article/20101006/NEWS01/10060315/0/LOCAL/2-times-the-fighting-spirit

Ms. Woolum is a lady who has set a model for approaching ACC that I hope to follow. She was diagnosed with ACC back in 1996, and has had more than a dozen surgeries to get ahead of the relentless spread of the disease. In 2005, she was diagnosed and treated for breast cancer, in addition to the ACC. In the article, her older sister gives advice on the best way for caregivers to support cancer patients: "Just be there for them. Just be there if they need anything."

I am glad I have learned about Ms. Woolum's story, and so very glad that she and her sister have each other, and that they were brave enough to share their path with others.

Thinking about freedom to do what I want

I currently have no restrictions on me - I can eat what I can stand (yeah, that whole 'lost taste' thing I don't see as a restriction), go where I want, drive when I want to drive. I know I have had restrictions on me in the past (just healing up from an operation can leave one feeling restricted), and will have them again in the future. Of course, my cars have always represented freedom to me, especially my first one and my current one. I submitted a story about my first car and won a contest calling for stories about 'beater cars' by the best repair shop in Omaha - Charlie Graham - with this story (added some edits), and I thought the trip down my memory lane might be of interest to others here. Let me know if you have stories to share in the comments!

Freedom is the best way to describe beater cars. I had an ice scraper for the inside of my robin's egg blue '66 Dodge Dart windshield, until I figured out I just had to pull out the glove box and physically flip the switch that allowed the radiator and heater core to talk to one another. I threw newspapers daily in all weather to 110 customers for a year to save up the money. I bought it in 1978 from a family of 5 sons. All of them learned to drive on it, and the last one that had the title in his name was on a nuclear sub. I had to wait for him to sign over the title via top secret mail service. I called it the Blue Angel, since I had a thing for flying. Thanks to my public library, and the help of Chilton Guides, I learned to maintain it as well as change a water pump (and figure out that heater problem!) I sold it to a friend when I moved on to my next car, and learned they turned it into a demolition derby car. A fitting end to a car with heart.

Adenoid Cystic Carcinoma in the news

This news item comes from San Antonio, Texas, and is pretty amazing.
Genetic tissue testing leads to 'personalized' cancer treatment - from KENS, Channel 5 in San Antonio. Tara Hernandez of Kerrville, TX has had 14 years wearing ACC, and thanks to genetic profiling conducted by START (South Texas Accelerated Research Therapeutics), Ms. Hernandez has undergone 'experimental pill therapy', resulting in '60% to 70% regression of her tumor.'

I can't wait to learn more about her treatment - wonder if the ACCRF would have more information about which drug she received that shrunk her tumor??!? Ok, calm down - this is one patient, and one drug. One patient with one drug does not a cure make for everyone. But if the health care profession is truly going to personalized medicine, I want to get in line NOW and have my genome sequenced (or whatever the process is to identify my breed of ACC).  It would be wonderful to avoid waiting for that other shoe to drop in the decades ahead, really.

Cleaning house

I decided how I would best like to mark the 5th year since diagnosis - I am chucking all books and informative items received from organizations during that first year*. At times after I was first diagnosed, it was as if I had been in a car accident and the lawyers were chasing me to catch my case. Livestrong. SPOHNC. American Cancer Society. They all had 'found' me (through my great friends as well as hospital connections, I imagine), and filled up my mailbox with notebooks, recipe books, 'how to cope' pamphlets, etc. They did so very much for my outlook when the days were very dark. I could go to the information resources (remember, I wasn't using the web to search my stuff at that time) and find tidbits that helped. Well, I am on the other side of that initial period, and don't need to keep those things around. I may be short-sighted, but if/when the cancer comes back to the point I need to deal with it, it won't be like the first time. Oh, there will be the great unknown - heck, we have that EVERY day. But I have identified my information pathways and the 'go to' folks that will be much better than pamphlets and notebooks. Maybe it is like the difference between having the first and second baby?

I again thank my great friends, wonderful family, and amazing extended librarian network for the cards, emails, flowers, jokes, and even a huge box of Archie McPhee treasures during my treatment weeks. Mail comes to my house in the late afternoon, and after I would nap a bit (resting helps the body heal, and healing during radiation is a must), I would go out to the mailbox and find something nearly every day. What a mood lifter! If you have a friend or family member that is going through any rough patch, grab that funny card you see the next time you go to the grocery store and mail it. It has power.

*And if you think it is wasteful for me to chuck the items rather than share with someone newly diagnosed - the items all have copyright dates of 2005 and older, not the most recent dates in the scheme of cancer care and information, and this librarian cannot pass potentially outdated information on with good conscience. I trust that anyone newly diagnosed will gather their fresh crop of informative items.

Research funding for adenoid cystic carcinoma announced by NORD

I saw in March 2011 report from NORD that they have released RFP for funding that includes research on diagnosis, causes, and/or treatment of Adenoid Cystic Carcinoma:
http://rarediseases.org/research/requests

Deadline for applying is May 20, 2011. The award is $30,000 seed money. GO FOR IT!!

Lessons about adenoid cystic carcinoma from poker?

I am somewhat of a night owl now - waking up at various times in the night, and either making jewelry or watching late night tv (or both). I was flipping through channels one time, and one of the live poker championship shows was on. I heard the announcer say, as he was introducing the players: "no matter if you follow the rules, you can still lose this game." While I don't agree with 'fighting' cancer as a win/lose proposition, that statement could apply to those of us that are ACC-wearers. We can follow the rules set out in treatment protocols, or by the National Cancer Institute on their recommendations for healthy living, or by our primary care providers, yet still have the ACC come back. There is currently no way of us knowing our future path after that initial tumor-ectomy and/or ACC diagnosis. I may be doing more belly-button contemplation these days, since I am coming up to the artificial 5 year magic mark since the tumor was removed and diagnosed. Not sure. What I do know: I want to stress to anyone that thought they were rid of the ACC only to have it rear up again - don't blame yourself. As far as they (the researchers) know, we weren't to be blamed for having it the first time, and sure as heck aren't to be blamed for it coming back. I doubt I will be having a cake to mark my 5th year milestone (cake is nasty now anyway), but I will probably spend some additional quiet belly-button contemplation time, figuring out my part in this big-ol'-world and where I would like things to go if the game continues to play out in my favor. As for my fellow ACC-wearers - I wish for all of us days full of whatever makes us our best selves. Here's to many more years of game-playing for us all.

Radiation in the news

As a human that received 6600 Gray in 2006 to kill off any remaining cancer cells left over after they removed my left parotid, and as a human that was told in 1986 that the Chernobyl cloud had indeed passed over the area of Germany that I lived in (we kind of figured it, when we saw the farmers plowing under their crops and slaughtering their livestock), and as an adult that grew up on this planet before the nuclear test ban treaty, I figure I am well acquainted with extra doses of radiation in some form or another. Contamination on the scale that is faced in places that have had accidents or incidents is what came to my mind when the surgeon told me that I would need radiotherapy as an effort to keep the cancer from coming back in my face. I was always grateful for the physicists' skills in programming the IMRT machine to make sure the beams of radiation met their mark and missed as much of my good parts as possible. I am even more grateful after I saw a story today about the 1987 incident in Goiania, Brazil - http://www.lastwordonnothing.com/2011/03/28/contamination-in-goiania/. The article discusses the danger of radiation amounts under 4 Gray, and I received 6600 Gray in a very localized area. Just boggles the (probably radiated) mind, that's all. And explains why long-term follow-up after radiotherapy is recommended. (Still waiting for that super hero power, though.)
If you have questions about radiation exposure and how it fits into your life, please contact your local library for more information. Here are some other sites of info that might be of interest:

Radiation Emergencies - MedlinePlus http://www.nlm.nih.gov/medlineplus/radiationemergencies.html

Radiation doses in perspective - EPA http://www.epa.gov/radiation/understand/perspective.html

International Atomic Energy Agency http://www-pub.iaea.org/mtcd/publications/publications.asp

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

I am glad that you found this blog, but so 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 action you can take at this time, since you need to concentrate on getting healed up and staying strong. Increasing your health literacy is very important.  Please contact your local library (could be a public or medical library) that serves consumer health information, and have them do information 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' unique 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 or your loved one's conditions 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 can 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 - click back to the Fall of 2006 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.

In case you are looking for the ACC Artists For A Cure Gallery - here's how to locate it

I just learned of this fundraiser, evidently run through Edith Thompson's (an artist from Virginia) site: http://www.whitearrowgraphics.com/ . The site is pretty difficult to navigate (in Chrome on a Mac, anyway) - titles just slip right by your mouse, so I wish you luck in gaining access. I had first seen mention that there was a gallery somewhere in the world through a mention on the ACCOI Facebook site, but it didn't have a link to the gallery (perfect challenge to make a librarian go digging). I found a faulty cached version of a press release that mentioned the url of this page out on Google, and managed to tease out the originating site. (Hiding the site that holds the goodies is not the best way to raise money, in this librarian's opinion - please, please link all stories/blog/Facebook posts back to the site you want humans to visit and buy!). In the About Me section, the artist says she specializes in portraits, wildlife, nature and landscape in pen/ink and watercolor. (It doesn't say what her connection is to our rare cancer, though - that is a part of the story that I would like to know, as well as how much a 'portion' is that is donated to ACCRF.) Once you get the titles to stop sliding by your mouse, view the artist's gallery - she is very talented! There are 3 other artists listed on the site as "ACC Artists for a cure members", all from Japan. The links aren't live, but here is one if you want to click on it to check it out: Miki Ito http://hopeart-turquoise.com/ (site is in Japanese). It is great that artists are sharing their work to raise money for ACCRF , and I look forward to learning more about the efforts as soon as the site is working and taking people to where they can see and purchase easily.

A fellow ACC wearer-fighter sent me this bit of news that a singer, Johnny J. Blair,  has given permission to include his song, One Wonderful Smile, in the Gallery. Mr. Blair will be joining the Monkees' tour this summer as bassist (ACC connection here - Peter Tork is a fellow ACC wearer-fighter).
Weird that the ACC Artists For A Cure Gallery is mentioned, but not linked in the story. Mr. Blair is on iTunes, if you want to check out his songs.

ACCRF is a fantastic foundation created by a fellow ACC wearer-fighter and her family. ACCRF has been responsible for supporting research that moves a bit closer to figuring out how this rare cancer works, which benefits current and future patients of this and other cancers. You can bet your socks that if you donate funds directly to this worthy organization, the money goes directly to research.

Celebrate spring with eagle-watching!

I found this site showing the eagle nest in Decorah, Iowa. I figure watching new life is a better use of my time these days, and thought you might also find it interesting: http://www.ustream.tv/decoraheagles

One eaglet hatched this morning - two other eggs remain. The ustream site has ads that show up, but I muted it and keep closing the ads, watching the eagle. Here is more information about the American Eagle:
http://www.baldeagleinfo.com/eagle/eagle4.html

Adenoid Cystic Carcinoma in the News

From Bremen, Indiana: The whole town got together for their annual basketball benefit activity, and gave the proceeds to Jon Hershberger and his family to cover medical expenses. Mr. Hershberger was diagnosed with ACC last July. http://www.thepilotnews.com/content/benefit-raises-over-26k-local-family-0

All the best goes to Jon and his family.

Special day for the Cheeky1

All day long, dear husband was texting me that he "had a secret". Drove me nuts (which made it all the better for his enjoyment, and is, of course, why he kept doing it.) Finally, he showed up at work, surprising me with roses, and telling me that all would be revealed in due time (yeah, he sometimes talks like that.) We went out to the car, drove over to the credit union, and he gave me a note to read: Cheeky has her papers. Whoopee! The Scion's car title came in, meaning we have her all to ourselves after 3 years of payments! Yes, we celebrated. I have only had 2 new cars in my lifetime, and don't remember the first one's pay-off date (we had toddlers, it might have happened during Desert Storm, who knows), but this one is for the books. Considering I have been paying off annual MRI and CT checkup co-pay fees, and another surgery tossed in there, paying this baby off is a big accomplishment.
P.S.: the significance of red roses is because red and gold are Iron Man's colors. And when I get in my car, I feel like I am putting on my Iron Man suit. I promise that I drive responsibly, however, as Driving With The Top Down is playing through the speakers.
P.P.S: note to my adult kids: yes, finding out how to get my radio to spell out Cheeky Librarian each time I turn the car on DOES define me as a geek.

Chasing protein

Thanks to Nutiva, today I tried Chia seeds for the first time, mixing them into a dish of raw cabbage with hemp and sunflower seeds. I had heard that Chia seeds, in addition to making hairy pets, are actually a nutritious food. Evidently they are big with raw-food folks, since most of the recipes I have located do not involve cooking at all. Since I no longer deal with slimy-textured foods very well, I figure I can eat the chia gel (made by soaking some seeds in water for a short time) only by mixing with crunchy things. Tonight's dinner had about 34 grams of protein in it, so if I can handle mixing the seeds in my food, I can go a long way towards the 1 gram of protein per 2 pounds of body weight that's recommended. If anyone has been trying these seeds in food, please let me know your favorite recipes.
By the way, if you are interested in using these or other ingredients in your recipes, you can now use Google to search recipes and ingredients: http://www.google.com/landing/recipes/.

Adenoid Cystic Carcinoma in the news

My deepest condolences to the family of 30 year-young Julie O'Rourke, who died on Friday after fighting this awful disease for 3 years: http://yourlifemoments.ca/sitepages/obituary.asp?oid=477949 . The family requests that donations be given to the London (ON) Health Sciences Centre Foundation (Head & Neck Oncology) http://www.lhsf.ca/.

Gerald Babao of Charlotte, NC, who was diagnosed with ACC in 2008, talks about training for a sprint triathlon in this article http://www.charlotteobserver.com/2011/03/07/2120295/tri-a-new-workout.html.

And Peter Tork, about the most famous ACC-wearer that I have identified in my hunts for fellow ACC-wearers, is joining up with the remaining members of The Monkees and going on a 45th Anniversary world tour, 2 years after his diagnosis and treatment:  http://today.msnbc.msn.com/id/41954791/ns/today-entertainment/.

Happy Birthday to me! Thanks for being my present!

To all of my family, friends, fellow cancer treatment travelers, colleagues - including my healthcare providers, readers, and folks that might have just met this blog: thank you for being my present. It is wonderful having a birthday when there have been times in my recent lifetime that I thought I might have celebrated my last one. You make the day brighter, and add life to my days. All in all, I am one very lucky Cheeky Librarian! Here's to a great year ahead for all of us. May we have the most fun possible while still casting a shadow.

Welcome Boing Boing readers!

Boing Boing just posted the story on the boxes (turns out, there were three winners): http://www.boingboing.net/2011/03/02/boing-boing-boxes-fi.html

Welcome to all the new readers to my humble blog.

Today is Rare Disease Day

The National Organization for Rare Disorders (NORD) is doing its best to get attention to the 30 million Americans that have a rare disease. Speaking as one (Adenoid Cystic Carcinoma is a rare cancer), I tip my hat to their efforts. Here is the website:
http://rarediseaseday.us/

One of the goals they have is to create a rare disease physician database, and they would like your help: http://rarediseaseday.us/take-action-now/physician-database/. (Oh, I so hope that they involve a librarian or two in the creation of that critter!) It would be very useful for a newly diagnosed ACC person to have such a database to use to help locate someone familiar with the progression patterns of this cancer, rather than be told by their caregiver that they are cancer-free and have the horrible surprise of its return 5-10-15 years later. (I am pretty lucky that no one has fed me the line of 'cancer-free'.)

You are able to post your story to their Facebook or Twitter site, as well as their video project http://rarediseaseday.us/take-action-now/video-project/ . We might get a few more contacts with some other ACC folks out there through this effort - and any time is a good time when we can link up with others that have this rare disease .

Adenoid Cystic Carcinoma in the news

This story comes from a close-to-home source, the Omaha World-Herald:
One couple's cancer conversation http://www.omaha.com/article/20110217/LIVEWELL01/702189977/1161. Chuck Offenberger of Clarinda, Iowa was first diagnosed with lymphoma, and went through treatment. Then his wife, Carla, was diagnosed with Adenoid Cystic Carcinoma. After her radiation treatments, Chuck's cancer came back, then was treated again.
I am sending all good wishes to this couple for what they have been through, and wishing them many happy days not involved with cancer at all.

A fellow cancer fighter needs funds - clinical trial care is a SUCCESS!

Jeanne Sather, author of the Assertive Cancer Patient blog (http://assertivecancerpatient.com) is currently undergoing treatment through a clinical trial - and it is working (thank goodness!). She is officially in remission, thanks to Genentech's TDM-1. 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.

Catching you up on the mysterious contents of "The Box"

I hope you have figured out now that I was picked as a winner in the BoingBoing contest.  I really REALLY wanted to make a big deal out of the box opening - had alerted librarian bloggers to be on the ready, even talked to our PR department at the university. In the end, it is probably better that I didn't open the box on the Daily Show as I had hoped (it is on my Bucket list, after all, to meet Jon Stewart). We made the best of things by opening it up in the coolest place I know - the McGoogan Library of Medicine. I took photos and video of the event - photos will be on my Flickr account and in the BoingBoing pool, and I will post the url for the video as soon as I get it edited (thanks to Stuart Dayton, artist of most of the things in the photo on the right, for running the iPhone video production!)

Things that the box contained included (of which I am sure there are GREAT stories): a Seagate Freeagent (with power supply only); a PowerPak by Technocel (minus the interchangeable tips), which also happens to be a 2010 CES Innovations Award Winner; a new in the package Dexim leather iPhone case (excellent - it is Husker red, but I bet Dexim has another name for it); a Dreamgear Elmo iPhone silicone case out of the package (this caused the most excitement in the crowd); and a beautiful black and green, though sadly empty, iPad case that has no evident brand (I consider this my 'hope case', and someday should have an iPad to fill it nicely.)

There were collectibles in there as well. A vintage Star Wars:Star Warriors board game (circa 1987, if I understood the date correctly, so it was released when we lived in Germany); a Fonas TRI-1 electronic handheld game (found a photo of it at the Handheld Museum - it came out the year I graduated high school, only a year after I had my first handheld calculator - we thought we were pretty cool back then...); a Star Wars figure (omg, searching for a photo of this is driving this librarian crazy with the limitations of the Internet - finally found this database, but still lost-let me know if you recognize it); a Budweiser leather cigarette and lighter holder (made to fit on a belt, but doesn't look as if it was ever used-nice to see since I am from Missouri too); Continental Airlines earphones (I doubt they are this pair) and a brass jack floating around in the box might have been intended for them, since they have the two-prong proprietary jack;  a 189a Brenda Blender card (from the 5th series of the Garbage Pail Kids, actually stuck to the packing tape on the inside of the box). Three additional items that caused more puzzlement than wonderment in the crowd: an Energizer tea light with globe (must have been a promotional item - not on their site), a blue Mini Mag Lite, and a plain white envelope, with "1 of 3" written on it.

Feeling like this was the start of a teen movie, I opened the envelope to find a portion of a QR barcode. So, I am sorry - the mystery is not solved, it only goes deeper. If you are "2 of 3", or "3 of 3", can we get together and find out the QR code's landing spot? In the meantime, I am going to upload the photos and video, and smile about the good time I had over the past week. What a way to to end my 49th year and keep my mind off of daily reminders of cancer treatment side effects. I am starting my first year of certified antiquity by being a tad cooler than I have ever been before, maybe even to my kids (I know, that is a stretch). Thanks to my friends and coworkers and blog and Facebook readers for putting up with my sophomoric excitement at winning a box of cool stuff. And thanks for the memories, Boing Boing! Here's to many more years for the both of us.