Just heard - Christopher Lyles died March 5th

My deepest sympathy goes to Mr. Lyles' family for their loss. He was a true explorer as the second person in the world to receive a synthetic trachea. Here is the obituary I saw today, from  The Baltimore Sun:  
Christopher Lyles, Defense engineer
 http://www.baltimoresun.com/news/obituaries/bs-md-ob-christopher-lyles-20120309,0,7288440.story

I will forever be in the shadow of this great man. His sister says it all: "He put his life on the line so other people can live longer," his older sister, Erica Greene, said of the risk the surgery presented. "In the future there will be tracheal transplants [in the U.S]. But someone had to be the first do it."

More about what Mr. Lyles did, as covered by the media and linked through some of my earlier posts:
http://cheekylibrarian.blogspot.com/search?q=lyles

Cancer in the news

Thanks to BoingBoing (http://boingboing.net), I saw this story yesterday:

Cancer is even more complicated than we thought
http://boingboing.net/2012/03/09/cancer-is-even-more-complicate.html

quote from the story: "Scientists have long known that the same type of cancer can play out in very different ways, from a genetic perspective, in one patient compared to another. But this new research shows that, even within the same patient—even within the same tumor—different samples of cancer cells have more genetic differences than they have similarities."

As a person with Adenoid Cystic Carcinoma, I figured on this all the time, but find it interesting that they say all cancers are more complicated. When we who are ACC-wearers check in with each other, we often find very different stories about how things (treatment side-effects, progression or regression of the cancer, etc.) are experienced. I bet if we had 200 of us rare cancer wearers together, very little would be in common outside of the biggies of us all having cancer invade our persons and our lives, and living through 'the valley of the shadow' of treatment and healing. Our doctors (gp's, oncologists, surgeons, take your pick) are basically bookies (well-meaning, excellently trained, caring), trying to outguess where or even if the cancer is coming back (pretty much with ACC, they agree that the "when" is a given, if we live long enough otherwise). So far, I am keeping my bookies poor - their bets haven't been successful, and I am still casting a shadow and paying taxes, while dodging expensive tracking procedures that haven't been proven to lengthen my lifespan.

Adenoid cystic carcinoma in the news

First - I saw this story from Staffordshire (UK): Survivor takes up charity challenge after beating rare cancer: http://www.thisisstaffordshire.co.uk/Survivor-takes-charity-challenge-beating-rare/story-15342320-detail/story.html

Bernie Webbe, mom of two young children, is going to raise money for Macmillan Cancer Support to help others suffering for cancer. And she isn't doing it close to home - she is going to take 10 days in May to walk across Peru! You can make donations on her site (today's figures show she is over half-way to her goal of 4000 British Pounds): http://www.justgiving.com/Bernie-Webbe

Congratulations to Mrs. Webbe and her strong family that has supported her through ACC treatment twice. Bernie, you are an amazing person to undertake this challenge - go for it! This Cheeky Librarian (that wears her scars on the other side of her head) will be cheering you on, thanking you for bravely taking every step of the way!

Second - the Bascom Palmer Eye Institute (BPEI) celebrated its 50th anniversary by hosting a scientific meeting. http://www.modernmedicine.com/modernmedicine/ModernMedicine+Now/BPEI-marks-anniversary-with-meeting/ArticleStandard/Article/detail/762191?contextCategoryId=40139
Among all the research shared:

"Results of a recent study of 19 patients with adenoid cystic carcinoma of the lacrimal gland treated via a novel approach called intra-arterial cytoreductive chemotherapy demonstrated survival rates of 94% at both 5- and 10-year follow-up, compared with 43% and 29%, respectively, for patients with conditions managed by conventional therapies. Two of the patients have had more than 15 years of disease-free survival, one of them for 22 years. "

Adenoid Cystic Carcinoma in the News

Located this news item from February 4, 2012: Former Mason City [IA] woman has college surgical unit named in her honor http://globegazette.com/news/local/former-mason-city-woman-has-college-surgical-unit-named-in/article_0d620802-4ef5-11e1-9839-0019bb2963f4.html . From what I have found and read on Ms. Gonzalez, she was a true inspiration.

Sherry (Brant) Gonzalez died from ACC last March 22nd. The Miller-Motte Technical College named their new surgical technology suite after her on January 27, 2012, honoring the way that she "continued to change futures and lives when she helped her fellow students and also when she was an instructor..."-quote from another article: http://www.clarksvilleonline.com/2012/01/25/miller-motte-technical-college-to-hold-ribbon-cutting-for-surgical-technology-suites-new-name-and-new-equipment/

And a third article, showing a photo of the suite: http://www.theleafchronicle.com/article/20120131/BUSINESS/301310046/Miller-Motte-surgical-unit-in-Clarksville-renamed

I learned about Sherry Brant Gonzalez through her father's obituary of January 27, 2012, which includes a request for memorial contributions to ACCRF:  http://www.thestarpress.com/article/20120128/OBITUARIES/201280326 .

I send my sympathy to the family for their great loss. And I recognize that Mason City has lost not one but two shining lights.

Adenoid Cystic Carcinoma in the News

Gerald Babao's story is told in today's South Charlotte News/The Charlotte Observer, from south Charlotte, North Carolina: Fighting rare cancer with extreme exercise
http://www.charlotteobserver.com/2012/02/22/3022022/fighting-rare-cancer-with-extreme.html

I really like what he says right off the top: "I can't control the fact that I have adenoid cystic carcinoma." He then goes on to say, "The only thing I can control is making sure that I'm as healthy as I can be and living an active lifestyle."

His quote at the end of the article,  "All I can do is be as healthy as I can and perhaps prolong the cancer from coming back and metastasizing. In the meantime, I'm not sitting around waiting. I plan to continue to be active and push myself to be as healthy and active as I can be."

Read more here: http://www.charlotteobserver.com/2012/02/22/3022022/fighting-rare-cancer-with-extreme.html#storylink=cpy

Go, Gerald, go! And I send cheers along for his family, who are supporting this great fund-raising Ironman.

Fellow ACC-wearer shares his story

Adam Spady, the only other Nebraskan I know that has ACC (another one was in our group, but she has moved east), gave me permission to post his comments here that he put on one of my earlier posts. I really appreciate fellow ACC-wearers sharing their stories - since ours is such an individual and rare cancer, we can't really use others' paths to predict where our own will go, but somehow knowing what others have done or are doing gives comfort. Plus, we might find alternative care paths or coping methods that might fit our own needs. As a medical librarian, I have to repeat: I urge anyone reading anything on this blog that I or others have shared to first discuss with their health care provider before stopping or starting any treatment. Now, the next words you read will be from Adam (I will add his contact information here if he gives me permission - otherwise, just post a comment and he will see it) -thank you for sharing, Adam!:

Hi Teri, this is Adam Spady. Thank you for the nice post on my caringbridge site the other day, I appreciate it:) I believe you had posted on my site last yr, but I think I was down in Mexico at the time doing treatments and I forgot to reply to your post when I got home. Anyhow, I didn't read your whole blog but I was just curious what type of radiation you had? And I think I saw you had surgery initially? Any chemo? I was just curious b/c I'm doing alt treatments now through a hospital in Tijuana, Mexico called Oasis of Hope after going through the whole cut/burn/poison i.e. surgery/radiation/chemo here in the US.
Initially, I had fast-neutron radiation (the most nasty type there is I believe) back in 1996. Then I was in remission for almost 9 yrs and thought I was home-free until it came back w/a vengeance (as they say it often does) in '05. At that time I had surgery in Dec, followed by 3 months of chemo/radiation (3 types of chemo & standard radiation not the "neutron bomb" again) in early '06. Then it spread to my lungs (probably caused by either the surgery and/or chemo) and I had the right middle lobe removed in '07. 2008 marked the beginning of reconstructive surgeries to repair the damage caused by all the horrible treatments, which consisted of about 6 months of multiple surgeries (w/breaks in between to let me heal). Then in '09 I found out the cancer was in my liver (again probably spread by either surgery and/or chemo).
A couple yrs prior to that I had decided that never again could I or would I put my self through those horrific treatments. Then fortunately I came across Oasis of Hope through personal research online (www.oasisofhope.com) and ordered their free book. After reading it, I decided that would be the place I'd go if my cancer ever came back...and that's just what I did shortly after I found out it had spread to my liver, beginning treatments there in the fall of '09. The nice thing about these alt treatments is there are NO side effects (at least I've never had any)and you can do them in the comfort of your own home (for the most part), as it basically amounts to taking a bunch of pills (vit/min/nutrients) everyday and going back only a couple times a yr for maintenance boosters (the things you can't do at home, like massive IV doses of Vit B-17, Vit C, Vit K, Ozone Therapy, etc). My cancer is stable for the most part, it's still there but not at all very active and I've been living w/it as such for the past 2+ yrs. Oasis views cancer as a chronic disease and they try managing it w/all the vit/min supp (allowing your body do what it was designed to do, naturally heal itself) instead of blasting it out of you like they do here in the US, w/no regard for the permanent damage caused to your body by the treatments. The first 2 guiding principle at Oasis are "love the patient as yourself" & "do no harm to the patient". Now I really hope & pray your cancer never comes back, but unfortunately the odds are not exactly in our favor (as I've come to find out) esp in this toxic world that we live in. So if you would ever like to know more about the treatments at Oasis, I'd be more than happy to answer any ?'s you might have about them:)

Oasis truly is LIGHT YEARS ahead of the way they treat cancer in this country, but sadly money, politics, corruption, greed, deception, etc dictate the types of treatments that are made available to us here in the US (see the books "Cancer - Step Outside the Box" & "World Without Cancer - The Story of Vitamin B-17"). After learning of this, it used to make me so angry and while it still isn't right, I'm at peace now knowing that God will "...bring to ruin those ruining the earth" as it states in Rev 11:18. The people responsible for these corrupt & dishonest practices may not be polluting or physically harming the earth itself, but they are harming the people which I'd like to think are the most important part of the earth in God's eyes...

Take Care
Adam Spady

P.S. Teri is my Mom's name:)

Adenoid cystic carcinoma in the news

from Kent, UK:
Memory of my brave girl will live forever
http://www.thisiskent.co.uk/Memory-brave-girl-live-forever/story-15052326-detail/story.html

Keziah Shorten from Tonbridge went through the first windpipe [trachea] transplant in the world in 2010 during her treatment for ACC, then underwent a second transplant in September 2011. She passed away January 10th this year after complications. Her mom, Tracey Hayter, shared her daughter's story and bravery in this news account.

Fund-raising page and Keziah's story:
http://www.justgiving.com/tracey-hayter

Adenoid cystic carcinoma in the news

I think my data might be included in this article, as I was diagnosed in 2006. If you were diagnosed ACC in your head/neck region while living in the USA between 1993 and 2007, and are still casting a shadow, you too could be included in the data. Ask for full-text through your local library (hopefully free or low cost), or you could pay for full-text at the Wiley site: http://onlinelibrary.wiley.com/doi/10.1002/cncr.27408/abstract:

1. Cancer. 2012 Jan 31. doi: 10.1002/cncr.27408. [Epub ahead of print]

Adenoid cystic carcinoma of the head and neck: Incidence and survival trends
based on 1973-2007 Surveillance, Epidemiology, and End Results data.

Ellington CL, Goodman M, Kono SA, Grist W, Wadsworth T, Chen AY, Owonikoko T,
Ramalingam S, Shin DM, Khuri FR, Beitler JJ, Saba NF.

Rollins School of Public Health, Emory University, Atlanta, Georgia.

BACKGROUND: Adenoid cystic carcinoma (ACC) of the head and neck (ACCHN) is a rare
tumor of minor salivary, parotid, and submandibular glands. The biologic behavior
of the disease is poorly understood, and nonsurgical treatment strategies have
yet to be standardized. The long-term prognosis continues to be guarded, with an 
estimated 10-year survival of <60%. Population-based studies examining ACC are
scarce. The authors aimed to analyze incidence rates and survival outcomes for
patients diagnosed with ACCHN using national population-based data. METHODS: Data
were obtained from the US National Cancer Institute's Surveillance, Epidemiology,
and End Results (SEER) program. Newly diagnosed ACCHN cases reported to SEER from
1973 through 2007 were categorized according to their sex, race, age, year of
diagnosis, marital status, treatment interventions, primary tumor site, and
disease stage. Incidence of ACCHN and postdiagnosis survival were examined over
time and compared across different demographic and disease-related categories.
RESULTS: The authors identified 3026 patients with ACCHN. The mean age at
diagnosis among those cases was 57.4 years (range, 11-99 years). Analyses of
incidence data demonstrated a decline in ACCHN rates between 1973 and 2007, noted
across all sexes and races with no detectable inflexion points. The overall
5-year, 10-year, and 15-year survival outcomes for ACCHN patients were 90.3%,
79.9%, and 69.2%, respectively. Females, patients with localized disease, and
younger patients were found to have significantly better survival across all time
periods (all comparison-specific log-rank P values <0.001). Multivariate analyses
revealed better prognosis among women compared with men (hazard ratio [HR], 0.73;
95% confidence interval [CI], 0.65-0.82), among married compared with unmarried
individuals (HR, 0.81; 95% CI, 0.71-0.91), with certain sites of origin and stage
of disease (HR, 2.788; 95% CI, 2.36-3.29), and in those who had surgery of the
primary tumor site (HR, 0.45; 95% CI, 0.37-0.54). CONCLUSIONS: The overall
incidence of ACC is declining. The noted differences in survival based on sex,
marital status, site of origin, and treatment intervention require further
investigation. Cancer 2012. © 2012 American Cancer Society.

Copyright © 2012 American Cancer Society.

PMID: 22294420  [PubMed - as supplied by publisher]

From ACCRF - Dovitnib study opens at the University of Virginia

I received this in my email - sharing it here for information. I recommend the two ACCRF publications linked below, too. By the way, in case anyone is wondering - I think I am currently in the "no evident disease" category. I am very glad that there are studies supported through ACCRF for when/if I become a patient with progressive disease, though.

February 2012

Dovitinib Study Opens at the University of Virginia  The University of Virginia has begun screening ACC patients with progressive disease for a new clinical trial. Supported by Novartis Pharmaceuticals, the Phase II study will enroll 10 patients to determine the efficacy and safety of the oral drug Dovitinib, an inhibitor of FGFR, VEGFR and PDGFR. ACCRF-supported studies at the University of Virginia and elsewhere have identified FGFR as a molecular target that may play an important role in ACC. Detailed information on the clinical trial is available at: http://clinicaltrials.gov/ct2/show/NCT01524692 Only ACC patients with actively growing tumors may enroll in the clinical trial. Such patients or their physicians may contact the Clinical Research Coordinator in Charlottesville, Virginia, USA: Erin Yarde, MS Phone: 434-243-8588 Email: ery7b@hscmail.mcc.virginia.edu ACC patients should discuss with their physicians whether a clinical trial is appropriate. They also may learn more information by consulting two ACCRF publications: Looking for Signposts: An Update on Progressive Adenoid Cystic Carcinoma (July 2011) A Guide to Systemic Therapy for Patients with Progressive Adenoid Cystic Carcinoma(November 2010) The publications discuss the history of past clinical trials involving ACC patients, recent advances in the molecular understanding of ACC, current treatment options and contact information for open clinical trials. The clinical trial of Dovitinib is an example of the welcome and growing trend of matching molecularly-targeted drugs with those patient groups deemed most likely to benefit based on basic and pre-clinical research.   Sign up for ACC Research Updates ACCRF Home Page

Adenoid Cystic Carcinoma in the news

The Cheeky Librarian here, letting you know the stories in the news or on the Internet about fellow ACC-wearers that I have located recently.

1. Christopher Lyles is back in the news with his new trachea:
http://abcnews.go.com/Health/Wellness/us-patient-artifical-trachea-transplant/story?id=15354809 

http://www.thestatecolumn.com/health/cancer-patient-pioneers-first-stem-cell-trachea-transplant/

2. Cancer.net has added or updated their existing topic page on ACC:
http://www.cancer.net/patient/Cancer+Types/Adenoid+Cystic+Carcinoma

3. I visited a site new to me - Cancer Forums http://www.cancerforums.net/
I can't tell who is producing this site, even after I registered for it. I located one person on there that said they had been diagnosed with ACC.

4. I got a metaphorical kick in the gut while searching for news on ACC - I located a blog that has stolen earlier posts that I wrote for the Cheeky Librarian blog. I am letting Google know and reporting to the home site that hosts the blog that stole my posts. After I get the word out officially, I will let you know the outcome. And if you have any advice, please let me know. I figure others have 'scraped' my blog for the information, and I don't take it as a compliment on the quality of my writing.

2012 and Adenoid Cystic Carcinoma still in my life

Omaha has been spoiled here with warmer than usual winter weather, but last week's weather reminded me that the cold is not ever far away. It was sub-zero wind chill two days when I left the house to go to work, and even with wrapping myself up and wearing a hat all day, the head pounded. I am glad the weekend did not involve leaving the house, and today was much warmer, so I should face Monday with less pain. It gets hard to concentrate, and since my head holds my greatest tool for work as a medical librarian, this is a coping issue.

I want to thank all of those who share their stories about having ACC and continuing their lives while facing the stress of living with cancer. I feel that we "get each other"whenever we email or comment, knowing without having to say it out loud what life is like now that we know we are mortal and are paying the bills that proved it to us. I have lost a few of the people that shared this change of perspective, and I really miss them. I value greatly the others that I email with - and just wanted to say thank you in public.

If anyone has some advice on how a person can keep on keeping on, I would eagerly share it here with others. Drop me a note, please.

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.