Items on eBay support ACCRF

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

Happiness

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

I wish you much happiness!

Bit of an anti-climax, sorry

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

Update: one tired-of-not-speaking Cheeky

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

Adenoid Cystic Carcinoma in the news

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

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

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

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

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

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

Cheeky still silent (well, almost)

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

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

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

Up in the wee hours, listening to the thunderstorm

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

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

How many blogs can a blogger blog?

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

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

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

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

Update and a food craving out of the mists of time

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

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

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

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

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

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

Breast cancer survivor has ACC in her family story

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

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

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

Cheeky one is still croaking

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

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

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

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

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

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

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

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

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

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

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

Debutaunt's last post - a must read by all

I saw this posted on the Assertive Cancer Patient's blog, and felt that it should be shared on my blog as well. Deb died on May 18, but this did not still her posting. Thanks to her sister, Deb left us 10 assignments that should be printed off and placed in every christening, birthday, graduation and wedding card you are sending out from now on: http://www.debutaunt.com/#001469.
I am one of the legion of readers that her writing touched, and I am grateful for knowing her through her blog. May I have a tenth of the class and style she had. Thank you, Sis #1, for your strength and skill in getting the post up and shared.

Graduations, anniversaries - time keeps on keeping on

Many wishes I made have come true since my diagnosis in June of 2006. Both of my kids have now graduated from high school - neither one went through a graduation ceremony, but they are just as graduated as someone that did. My hopes are now of watching them graduate college in whatever form or fashion that they choose to do so.
Next Tuesday is the 25th anniversary of our first date. The truck the mister was driving back then is parked nicely out in the side yard, still starting up whenever he asks it to. (I know my place in his life - it is after the truck!) He still blames my mom for getting him hitched, since she was his grandparents' neighbor at the time. She disagrees. They have been having this conversation for 25 years, at times debating the issue like some UN session. Naturally, I have no say in the matter - it appears that I was merely a pawn.
I know that none of us are guaranteed to reach the various milestones in life, especially since I have experienced very dark days when I wondered if I was going to outlive our family dog. I am really glad and humbled that I have been here to witness these particular milestones pass by, and grateful to each and every health care professional, friend, family member, blog supporter - any and all that offered their support to me and gave me strength to carry on when I didn't know that I could. The next milestone I am aiming for - our 25th anniversary on Dec. 1. We will be celebrating then, you can count on it - and the debate will continue to rage on between the mister and my mom...

Adenoid Cystic Carcinoma in the news

I just saw these two stories covering Adenoid Cystic Carcinoma support by those stationed in Iraq.

First found this one: Running for our lives in Iraq
http://www.dvidshub.net/?script=news/news_show.php&id=34088
Capt. Christopher Etheridge of the 553rd Combat Sustainment Support Battalion mentions running to raise support and awareness of ACC in the "Who's Your Hero" run in honor of Andrea Whitesell O'Connell, who passed away in 2007 of ACC. The Live Like Andi Foundation sponsors these runs to raise money for research and scholarships: http://livelikeandi.org

The second one is a video showing (possibly a different?) "Who's Your Hero" run at Victory Base Complex in Baghdad, Iraq: http://www.dvidshub.net/?script=video/video_show.php&id=59575
The video includes interviews of soldiers running in the event.

I am glad that the soldiers based over there have found this sanity-building outlet for themselves. My husband was in a foxhole and tents during 1990-1991 over there in the Gulf War, and mentioned in letters how frustrating it could be at times. It got pretty un-frustrating fast for him and his fellow soldiers, but his unit wasn't stationed over there for years, not like the current soldiers experience.

Countdown to the 2009 Cattlemen's Ball

June 5 & 6 will find me near Doniphan, Nebraska, at this year's Cattlemen's Ball http://cattlemensball.com/ . They hold the ball every year in a different location around the state, always raising money for cancer research here in Nebraska. In addition to 'manning' a promotional booth for the Consumer Health Information Resource Service (CHIRS), I was asked to take part in the fashion show. The photo shows what this lucky Cheeky Librarian gets to wear - mink! This and other furs that will be showcased at the fashion show are appearing courtesy of the Christian Nobel Furs Limited, located in Omaha. Their store is in the Regency Court shopping center, the location of that wonderful jewelry store, Borsheims. Oh yeah, I could get used to this kind of living! Before you think it will be all fun and games for me - remember that the Cattlemen's Ball takes place in huge circus tents out in a field, and the windy day (well, windy before the storm comes in) will no doubt be pushing 100 degrees. But I will endure the tribulations gladly (grin!) - after all, how many times in a woman's life can she have the chance to do this? I will be walking the runway with another blogger that I have linked to on my blog, and a friend that has saved my life many a time: The Assertive Cancer Patient is coming to speak, take part in the fashion show, and also bring her line of jewelry to sell in the general store tent. You can see photos of the jewelry she will be bringing to sell on her blog: http://assertivepatient.com/ . And I am sure that both of us will be talking about our experiences at the Ball during the week following the event. Stay tuned!

Something that I think about all the time, now that I have been blogging on librarianship (since 2003) and Adenoid Cystic Carcinoma (since 2006):




see more Funny Graphs

Will Ferrell Sunscreen to Launch Just in Time for Summer

Yes, you read the headline correctly - Will Ferrell is into sunscreen, and is launching it to benefit the Willpowered Scholarship Fund at the Cancer for College site http://www.cancerforcollege.org/Scholarship_Info.php. The Fund grants scholarships to cancer survivors and amputees. (I hope Ms. Roark in the following post fills out a scholarship form when they come out in July!)
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From the Cancer for College press release:

Will Ferrell’s Sexy Hot Tan, Sunstroke and Forbidden Fruit SPF 30 sunscreens launched today on Amazon, eBay and www.cancerforcollege.com starting at $11.99. The products are Ferrell’s first foray into fundraising products for a charity he has been involved in since his college days.

Cancer for College was formed in 1993 by two-time cancer survivor and double amputee, Craig Pollard. Pollard was a fraternity brother of Will Ferrell at the University of Southern California. Since its inception, Ferrell has been a devoted supporter of the charity and has served as the celebrity host of Cancer for College fundraising events since 2002.

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Cheeky Librarian here again. Since I am REALLY into sunscreen these days (and hats, and Lands' End sunscreen clothing-my experience with it here, and being inside most days during the hours of noon until 8pm... ), I figure I will be buying some of Mr. Ferrell's product. This I will be doing for many reasons: the protective properties; the hilarious labels on the bottles (Will Ferrell in a fig leaf - priceless); and for the fact that all proceeds go to the scholarship fund. Thanks for not making us save and mail in sticky lids, Will - I for one appreciate it.

Adenoid Cystic Carcinoma in the news

This is a follow-up story on a KU student, now grad:
Battling Cancer Changes Student's Outlook
http://www2.ljworld.com/news/2009/may/17/battling-cancer-changes-students-outlook/?city_local

Congratulations and a standing ovation for all you have accomplished, Jessica Roark. Just let us know when you do that fund raiser for AACRF.

In a previous Cheeky Librarian ACC in the News post, Ms. Roark was featured in a story about college students with cancer just one year ago:
http://cheekylibrarian.blogspot.com/2008/05/adenoid-cystic-carcinoma-in-news.html

In other news, I found this interview of Peter Tork written and copyrighted by Susan Walsh: An Interview With Peter Tork - the Former Monkee Talks About His Cancer Diagnosis and Recovery
http://50s-60s-pop-music.suite101.com/article.cfm/an_interview_with_peter_tork

I really like his response to her question: "Has your perspective on life changed as a result of having cancer?" A portion of his reply: "No, my perspective on life hasn't changed a bit as a result of having (had) cancer. I've worked kinda hard on my attitude toward life, and damn' cheap it would have been, too, if I hadn't made provision in it for illness and death, wouldn't it?"

Go Peter, go.

The words and link that follow showed up when I took the excerpt out of Ms. Walsh's article, and must be there to serve as a trackback:

Read more: "An Interview With Peter Tork: The Former Monkee Talks About His Cancer Diagnosis and Recovery | Suite101.com" - http://50s-60s-pop-music.suite101.com/article.cfm/an_interview_with_peter_tork#ixzz0G6Hno4Ky&A

Adenoid Cystic Carcinoma in the news

The StarTribune has a story about one of the Gophers track stars' experiences since being diagnosed with Adenoid Cystic Carcinoma:
Gophers Runner Finds Strength In Numbers
http://www.startribune.com/sports/gophers/44945072.html?cache=n&uccb=1242491211

I wish Ms. Anderson, and anyone else newly diagnosed, the very best. May everyone have the support group that I have experienced (and STILL experience - thanks, guys!) And may the day come when I no longer have stories to post on Adenoid Cystic Carcinoma in the news...

Back from a road trip in the Cheeky Scion

I took off and drove with my mom to St Louis this past weekend. We had a great time together, save for 4 young inebriated gentlemen in the hotel room next to us that got us up by wrestling and yelling at 4am on Saturday morning. We gave serious consideration to knocking at their door at 6:30am, 7:00am, and 7:30am, but went to the St. Louis Art Museum instead (they have the best url ever!). After refreshing our sleep-deprived eyes with great art (I was able to see my favorite: Monet's "Water Lilies"), we watched the new movie "Ghosts of Girlfriends Past", then had dinner at Cheesecake Factory. Driving east back to the downtown Hilton, Market Street was EMPTY, a wonderful experience as we drove towards the Gateway Arch, shining in the setting sun. The brunch yesterday at the Missouri Botanical Gardens was another wonderful experience - tables full of cheese grits, barley risotto, roasted green beans, and hummus (yes, they had many other goodies that regular people would like, but I was concentrating on my type of food this time!). Even though the menu wasn't a surprise (I had even called ahead to ask if there were spices in the different dishes), I was in heaven. The beautiful flowers and plants, the great weather (Saturday and Sunday, at least), a buffet with no food issues, and being with my mom - a magical day. I am a mom also, and my kids had honored me outside of the weekend - also magical experiences. I figure none of us get many more of these days, so I want to make them all count.
On the way back to Omaha, I get to drive by Worlds of Fun in Kansas City. I saw cars heading up the Mamba, the last roller coaster I will ever ride (probably not a good thing to get on thrill rides with radiated bones and that titanium screen door on my skull). I am proud to say that I was over 40 when I road that thing with the mister, shocking my nephew when I did so. After reflecting on how great it was that the lucky riders were on a roller coaster in early May on a Monday (has to be a good thing, right?), it came to me that the ride is a fairly good metaphor for what I have experienced since the testing began in May 2006 that led up to the cancer diagnosis, and treatment/recovery that followed. I pulled out of the station, went around the first bend, then up that great big hill, slogging through every physical test they came up with, ending with a parotidectomy. At the very top of the hill, the doctor told me it was cancer, kicking me and my family and my friends loose on that first stomach-losing drop. My support team have watched me go around the track many times, and have met me each time I have pulled into the station to get off the ride until the next scan/test/lump shows up and I have to go strap myself into the coaster again. Years ago, each of the people that rode the Mamba with me had different experiences while on the same ride as I was on. Now I know that all the people that have been diagnosed with cancer (AdCC and all other kinds) have different experiences than I have had during their treatment, recovery, and learning how to cope with this new addition to all of our lives. I wish we all had good experiences, but that just doesn't happen. By recording my experiences, even 3 long years later, I hope this blog may let someone else know a bit more of what to expect or plan for when they find themselves at the top of that diagnosis hill. Hang on tight - you are not alone in this. And if you are diagnosed with Adenoid Cystic Carcinoma, please let me know if I can be of any help.

A great cancer rant over at After Cancer Now What

I want to state that I would not be where I am without the love and support and INFORMATION from many different people, some of whom will never know how much they have helped me since my diagnosis just shy of 3 years ago. With that said, there are a whole bunch of people, some the very same supportive humans, that said the lamest, most hurtful things to me or my family while we were going through cancer treatment, and wondering if I was going to outlive the family dog. In the interest of keeping them from repeating those comments to anyone else, I offer this link to a cancer rant:
http://www.aftercancernowwhat.com/2009/05/cancer-rant-is-this-you.html

In case you are following swine flu news

HealthMap is a good site - it is a global disease alert map
http://www.healthmap.org/en

It also has a Twitter account which includes other useful links to news and resources:
http://twitter.com/healthmap


The World Health Organization's site:
http://www.who.int/csr/disease/swineflu/en/index.html

Centers for Disease Control and Prevention
http://www.cdc.gov/swineflu/investigation.htm

I met the first female Navajo surgeon

Lori Arviso Alvord, M.D. presented "The Scalpel and the Silver Bear: Combining Western Medicine and Traditional Navajo Ceremonies to Create Healing Environments" at the University of Nebraska Medical Center on April 13. More information on the event is at this site:
http://app1.unmc.edu/publicaffairs/newsarchive/view_art.cfm?article_id=1874. Dr. Alvord is a member of the National Advisory Council for Complementary and Alternative Medicine (NACCAM) http://nccam.nih.gov/about/naccam/roster.htm. She is Assistant Professor of Surgery and Psychiatry at Dartmouth Medical School. (She is the person in the lower left side of the photo.)

Her presentation really spoke to my heart. It was wonderful to see the images she projected and hear her stories - I haven't had that sort of experience since the Cancer Bloggers Reunion last summer in Seattle.

I attended the event with two great librarians (Nebraska has the best!): Siobhan Champ-Blackwell (lower right), and Marty Magee (upper left), both National Network of Library of Medicine outreach librarians for the National Library of Medicine. (I used to be one - I recommend the job to anyone interested in being on the cutting edge of librarianship!). Dr. Alvord has a connection to the National Library of Medicine - her biography is included in a great website and traveling exhibit: Changing the Face of Medicine http://www.nlm.nih.gov/changingthefaceofmedicine/physicians/biography_7.html. She graciously agreed to posing for a picture with the three of us. Thank you again, Dr. Alvord!

"I don't have access to the same toolkit"

That is a quote from Michael J. Fox on the Larry King show, in response to a question about how it was to act now with Parkinson's disease. That statement, and another he made: "The only thing I don't have a choice about is having Parkinson's - everything else I have a choice", fit my thinking of this life after a cancer diagnosis. I don't have the same toolkit of energy to do the level of outreach I used to do before 2006, for example, but I do have new tools: inner strength that has been proven; empathy; and first-hand knowledge of how becoming an informed patient can improve treatment outcomes. I don't have a choice about having adenoid cystic carcinoma - but I do have a choice about everything else.

An update - I had my annual CT scan (not sure if I ever get another MRI, they figure the CT will be better since I have the titanium screen door on my skull), and no aliens were spotted. I have been having increased headaches, but hey, the docs have done their best to GIVE them to me, so the least I can do is enjoy the things. No pain meds were offered, other than alternating tylenol and ibuprofen. Looking forward to spring someday - and still going without the head covering this year in the sun. I am not out to get the tan of my life (figure that would look weird anyway), but it is so nice to be able to not wear the shade right now.

Kind words about the Cheeky Librarian blog from a health professional

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

------------------
Hi Teresa,

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

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

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

Warmly,

Jennifer

Jennifer Kroc, MSW

Medical Social Worker

NIU Institute for Neutron Therapy at Fermilab

New site to share - AlphaInventions

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

Newly diagnosed with Adenoid Cystic Carcinoma?

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

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

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

Arranging electronic access for your survivors

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

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

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

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

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

Roundup of Adenoid Cystic Carcinoma bloggers

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

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

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

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

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

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

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

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

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

Adenoid Cystic Carcinoma in the news

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

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

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

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

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

Personal experience with new Lands End sun protection clothing

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

Made it to another birthday!!

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

International Rare Disease Day

Adenoid Cystic Carcinoma just might have its day today - February 28th has been set by the European Organisation for Rare Diseases [http://www.eurordis.org ]and a coalition of other health and rare disease organizations to bring attention to rare diseases: http://www.rarediseaseday.org/

On the site under "What is a Rare Disease", I think this description fits what ACC patients face (or at least this patient has faced several of the points):
"Rare disease patients face common problems:
- Lack of access to correct diagnosis
- Delay in diagnosis
- Lack of quality information on the disease
- Lack of scientific knowledge of the disease
- Heavy social consequences for patients
- Lack of appropriate quality healthcare
- Inequities and difficulties in access to treatment and care"

They have a section on the site where you can tell your story through videos or photos:
http://www.rarediseaseday.org/yourstory .

I checked the Eurodis site - didn't find anything on Adenoid Cystic Carcinoma - but it isn't that type of site. They link to other sites that do have information on ACC, such as NORD [http://www.rarediseases.org/]

Wow - I won!

How cool a world this is, that I get to read a great writer's work AND win her blog contest!

http://aftercancernowwhat.blogspot.com/2009/02/contest-winner.html

Be sure to stay tuned to her blog - and not just because there is another contest coming up (which there is) - this blog has great information on it. That is about the highest praise that this librarian can offer!

Please take a look at the After Cancer, Now What blog

I have this blog linked on the right side of mine, but here is the address again:
http://aftercancernowwhat.blogspot.com/ Recent topics include: Big Pharma really just wants to help [I believe this title is on the sarcastic-tone side-th]; Kidney Removal Through Belly Button; Cancer and Nanotechnology; Cancer Survivors More Likely to be Unemployed... all very good reading. The most recent post you really want to pay attention to - she has a giveaway going on, and gives the rules on how to enter. In the interest of complete disclosure: yessss, I am entering by posting to this blog. I have also linked to some of her posts in the past. The author is part of the crew that posts to The Stupid Cancer Blog http://imtooyoungforthis.blogspot.com/

What I really want to know is - how did she get her latest post to show up as Feb 22, 2009? If she has time travel capabilities, I will keep you informed - sending word from next Tuesday through yesterday's post!

The Stupid Cancer Blog.: Pot Smoking, Lazy Ass, Young Invincibles

As a mom of one (nearly two) "young invincible", the term used by insurance companies for 20-somethings that don't have insurance coverage, I found the following post very interesting.

The Stupid Cancer Blog.: Pot Smoking, Lazy Ass, Young Invincibles

Growing up, health insurance wasn't ever talked about. My mom was divorced when I was in the 3rd grade - no coverage, since she didn't take state aid, and my dad only covered his stepkids. I didn't have health coverage until I was married to a US Army sergeant at the age of 23, and that wasn't really insurance ('health insurance', I now know, equals paperwork, and asking "mother may I be healed and whole again", and playing games that you don't know all the rules to and are therefore hard to win). When we lived in Germany in the 80's, I heard much grumblings from my young German friends who complained about the high cost of insurance/health care coverage (not sure how it is categorized over there) taken out of each and every paycheck, since they weren't currently using the service. But man, when something went wrong and they did need health care coverage, there were few worries (well, except for the waiting lists, that is).

Coolibar School Sun Hat contest

If you are associated with a public or private school, school organization (yep, PTA/PTO counts), or non-profit that works with education, consider entering this great contest to win up to 50 sun hats for your class:
http://www.coolibar.com/contest.html?source=emailvol5sales15
That page lists methods of entering the contest, and the contest guidelines of who is eligible to enter.

The contest is to draw attention to the Coolibar School Hat Program, which allows schools to purchase children's hats at 50 percent off of retail price. (Note - home schools are included in this program.) There is a link on the page above to the School Hat Program brochure.

Deadline for entering the contest is May 1, and winners will be announced on May 14. What a great way to have fun with sun protection, and just in time for those end of the year field trips and summer vacation!

Health Information National Trends Survey - HINTS

For any researchers or wanna-be researchers that may be reading this blog - HINTS collects data through telephone surveys on how Americans locate and use cancer-related information. Here is a link to the site: http://hints.cancer.gov/index.jsp
and a link to the Fact Sheet: http://hints.cancer.gov/docs/hints_factsheet-accessible.pdf
Unfortunately, they only list how many look for cancer information 'online' - they don't differentiate between what online resource folks are using for their information. I would have been very happy to report the percentage of people that look for cancer information on blogs, for example...

Locating information about clinical trials

Korean Cuisine mentioned a drug trial in the comment on the last post that seems promising for Adenoid Cystic Carcinoma. Here is a National Cancer Institute site on that drug with links to definitions, patient information, FDA approval information for trials to take place, and clinical trials for the drug Vorinostat (Merck brand name - Zolinza):

http://www.cancer.gov/cancertopics/druginfo/vorinostat

I also searched the drug name AND detroit, since Korean Cuisine said that the trial was taking place there, and located this open trial on ClinicalTrials.gov:

http://clinicaltrials.gov/ct2/show/NCT00499811?term=detroit+AND+Vorinostat&rank=1

Since our cancer does not affect enough people in the same fashion at the same time to run a trial on just us (well, that is what they say, folks), we will have to piggy-back on other trials, and hope that researchers do a systematic review of the literature and locate all references dealing with chemotherapy and Adenoid Cystic Carcinoma. I volunteer to be your librarian, if this is something you want to get frisky with, Madame/Mister Scientist. Let's rock.

New dating site for people living with a terminal illness

I saw this mentioned on BoingBoing: Till-Death-Do-Us-Part.com
The site just started today, Valentine's Day. Link to the press release - http://www.prweb.com/releases/datingservice/terminallyill/prweb1964014.htm
Link to site: http://till-death-do-us-part.com/

I am very blessed to be in a long-term relationship with a man who has known me since I was 15 years old (and this year will celebrate with me a 25th wedding anniversary), and remembers what I looked like in the cancer-free years. If I was back out on the dating field, though, wearing the scars of my cancer fight or recent news that the cancer has come back and won't be going away, I could see myself signing up for this. As anyone who has read this blog knows, I am all for getting things out into the open right away - and this site seems to do just that.

Just learned of another source of sun protection clothing

Lands End is now in the sun protection clothing business. Their line is called Sun.Life, and you will be hearing more about it on this blog in a future personal review of one of their products. They have a special sale going on this Sunday and Monday, though, and I didn't want you to miss out on the chance to check out these clothing items if they are of interest to you. You can link to the entire collection here: http://www.landsend.com/ix/index.html?store=le&action=newSearch&search=sun.life&imageField.x=0&imageField.y=0 . I saw clothing items for the entire family, with a range of UPF 30 to UPF 50. (The search link above is not perfect - their database doesn't just bring back the Sun.Life items. Head for the photos that say "New" and aren't footwear, and you should be able to identify most of the UPF clothing.)

Lands’ End 20 percent off promotion takes place this Sunday and Monday (starts 12:01 am Sunday, Feb 15^th - Ends 11:59 pm Monday, Feb 16^th). For two days only, Lands’ End will offer 20 percent off all merchandise (excluding overstocks, shipping and services). Simply enter the promo code and pin number below at checkout on http://www.LandsEnd.com and you will get 20 percent off your entire order. Promo code is AMERICA/ Pin number is 6289

A great Friday story

I thought you would like to see this news story: http://www.ketv.com/news/18651779/detail.html . It is about a man in Omaha riding his motorcycle who lost $2500 in 100 dollar bills out of his pocket as he rode down the street. Motorists following him saw the bills fly, and stopped to pick them up, BUT NOT TO KEEP THEM. They waited while another driver went ahead to get the motorcycle rider back, and gave him $2400 of the $2500. He was so happy. He didn't even mind the missing 100 dollar bill - saying that the person that kept it probably needed it.
Even though our economy here has not been hit as hard as other areas around the nation, those folks that stopped could have rationalized the need to keep the 'free' money, and use it for their kids, their parents, whatever. Instead, their actions have inspired many more than the money would have benefited, and a man is walking taller because the human race did not fail him in his hour of need.

Crying isn't always a bad thing

Ok, if you happened to be lurking around a craft store parking lot in Omaha yesterday, and noticed a woman in a golden Scion bawling her eyes out, fret no more. It was me, and I wasn't sad - I was extremely happy. It was over 50 degrees outside, bright sun, and I was without head covering, feeling the breeze on my face as I walked back to my car after experiencing some eye-candy in the Hobby Lobby. When I walked up to the car and saw my reflection sans hood, it hit me that I was a totally free woman, headgear-wise. That just hasn't happened all that often since August 2006. I pulled myself together, and drove home grinning. I don't know if I will be repeating it anytime soon, since I was bright red on the radiated side of my face last night at bedtime (the sun really kicks up the burn in my face, all over again.) But man, it was sweet while it lasted.

Met another Adenoid Cystic Carcinoma warrior today

The author of Korean Cuisine blog commented on my blog today, and I have added a link to her blog to this one. It would be wonderful if all of us ACC folks would be able to find each other as soon as we here the diagnosis, so maybe we would know more about what to do, where to go, what has worked well for others that we might borrow to use on our own path through treatment, recovery, and possible recurrences.
I still have the dream that we can charter a cruise ship, christen it the ACC Elite, and invite all the researchers to come to us. They can have their scientific meetings and clinical visits or whatever while we relax and sip on adult beverages, indulging in conversations with each other as we please. There would be a shaded deck for those of us that just went through head/neck radiation; foods sorted by texture and non-spiced, for those of us that have lost sense of taste (and the good stuff for the ones whose taste has come back!); and plenty of ways to make memories for a lifetime to crowd over the ones we would rather not have in the fronts of our heads.
Here's to all of us ACC warriors - may we always fight the good fight.

Met another ACC breast cancer warrior today

I have linked to another cancer blog on the right side of this page - Cyndi's A Day in a Life With Life. Cyndi tells about her experiences with having ACC of the breast - she makes the third person I know of with this rare type of breast cancer. Thinking of you, Cyndi, and everyone facing ACC.
I am sorry we get to meet in these circumstances, and still glad that we get to meet, so we know we are not alone.

Awareness ribbon/color for Adenoid Cystic Carcinoma?

Ok, regular readers know that I am not into the whole awareness ribbon/color thing to show support for cancer of any kind (the link goes to my good friend Jeanne's blog entries on boycott October). Others are, though, (Hi Sara C.!) and as a good librarian I have gone hunting to see if anyone has designed a ribbon or designated a color for ACC.

Oral, head, neck cancer has one, and makes pins and bracelets available for purchase on the SPOHNC site:  https://www.spohnc.org/enamel_pins.php . But if your ACC was diagnosed in a different part of your body, this one won't do. And you may not want to have the breast/lung/other location cancer ribbon to signify this very unique type of cancer. So I figure the color and theme topic is up for grabs for our brand of cancer, folks.

If someone was going to design one for ACC, I hope they follow the lead of the Live Like Andi Foundation, and make it leopard/cheetah print - in Andi's words, that IS a color!

If you or someone you know does designate a color or type of ribbon for ACC, please let me know.

Added a new blog to my list

I have been subscribed to a blog titled: After Cancer, Now What
http://aftercancernowwhat.blogspot.com/ . You may wish to check it out, whether or not you have experienced breast cancer or cancer of any kind. The author also has a blog that lists resources relating to cancer of all types:
http://acnwresourcepages.blogspot.com/

Please let me know if you read a blog that I should link to here at Cheeky Librarian. There are many eyes that read this blog, and I want to be of help in the way of information for each and every one of them.

Adenoid Cystic Carcinoma in the news

This Maryland article mentions research into the reasons why cancer appears to be prevalent in Poolesville:
County to study possible cancer cluster: http://www.gazette.net/stories/01072009/germnew190016_32470.shtml

from the article:
"Catherine Poss, a 15-year Poolesville resident and a Hempstone Avenue neighbor of Kelly's, has no family history of cancer and has never drank or smoked. She was shocked two years ago when her doctor told her she had adenoid cystic carcinoma, a rare cancer that affects the salivary glands. But she was even more surprised to learn that a woman on her street, who was in her 30s at the time, had received the same diagnosis about 14 years ago."

There have been no genetic nor environmental causes identified for ACC at this time. Since it is a rare cancer, I am not sure if anyone is doing much research in that area - let me know if you hear something different. I have no idea why I 'caught' the cancer - I haven't ever smoked, though dated men that did; drank little; lived in Germany for three years once, encompassing bad water sources and the passing cloud from the Chernobyl meltdown (!); grew up in the middle of the country in both urban and rural areas... If they can establish a cause for those two women's ACC, many of us would like to know about it, so we can warn others how to keep from experiencing this life-changing cancer.

It IS a wonderful life

I have no apologies available for not posting for the many weeks now. Part of me sort of 'checked out' (minor librarian humor there) after the last scan dance, and I was able to just concentrate on living life and doing my job. The cancer just had to take a back seat, along with any journalistic tendencies I might have possessed.
Life went on pretty well - family is doing ok, job is doing ok, personal life is doing ok. I have gone through another radiation oncology check up (now on 6 month rotations for that one), which went well, and another head/neck surgeon check up (now on 4 month rotations) which also went well. Not sure when my next head/neck mri will be scheduled - will ask the next time I see the head/neck surgeon. The pain in my side is still there - but having had it scanned to the nth degree, I basically ignore it with other aches/pains in my nearly 50 year old body.
My goal with this blog is still to post things here of use to others facing adenoid cystic carcinoma (also known as ACC, AdCC and adenocystic carcinoma), or to others facing head/neck cancers. I hope something you read here will be of use to you or a loved one.

Adenoid Cystic Carcinoma on Facebook

I should have known that folks with ACC (or people caring about others that have ACC) would be on Facebook. I ran a search for adenoid cystic, and found two groups:
I Support "Wild Bill" Allen's Fight Against Cancer
and
Help Fight A.C.C. (Adenoid Cystic Carcinoma)
I don't currently have a My Space, or Second Life account - if someone does, let me know if they have ACC groups on those sites as well. Just maybe, we can all get together virtually someday. The discussion groups and forums on the right side of this blog do a great job in linking people together - give them a try, if you are searching for fellow ACC fighters. You can also post here, and we can gather our own group together right here on this blog. Whatever the result, if you or someone you love is fighting this rare cancer, please know you are not alone!

Adenoid Cystic Carcinoma in the news

Story by Dan Rodricks about an ACC fighter and the Maryland Health Insurance Plan, from the Baltimore Sun (10/26/08):
http://www.baltimoresun.com/news/health/bal-id.rodricks26oct26,0,3571297.column
Stanley Whitaker, a rock guitarist, has ACC and chronic low-level leukemia. Here's to him feeling better fast and returning to play the music the world loves to hear. His personal web site, http://208.77.102.202/sal/HomeCtrl.jsp, mentions an upcoming benefit concert on November 9th. His Caring Bridge site: http://www.caringbridge.org/visit/stanleywhitaker.
And there is a forum for fans of Happy The Man and Oblivion Sun - Stan's rock bands: http://htfo.proboards10.com/index.cgi .

New book: "What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope"

This book is from the American Cancer Society, edited by Julie K. Silver. A review can be found here, at the Los Angeles Times:
http://latimesblogs.latimes.com/booster_shots/2008/10/book-compiles-a.html

According to its Amazon listing, it has not yet been released. Here is the link to the book on the American Cancer Society, too.

HealthGrades announces new 2009 hospital ratings

You can now see the ratings of hospitals, based on specific medical procedures, at the HealthGrades site: http://www.healthgrades.com/

According to Judith Graham, Chicago Tribune reporter: "For consumers, an important message is there are real differences between medical centers in terms of how well patients fare when they're having a heart attack or a stroke or when they're admitted with heart failure or pneumonia.
The new rankings are particularly useful in helping people have important conversations with their physician. If I were having a hip replacement, for example, and my doctor recommended that I have the operation at a hospital with a three-star ranking for that procedure, I'd ask for the reasons behind his or her choice."

Other news items covering this announcement can be found at this Google News link:
http://news.google.com/?ned=us&ncl=1257518684&hl=en&topic=m

Breaking in for a career-related message: "I love my librarian" award now taking nominations

To my blog readers - think about the librarians that have assisted you recently (public, school, university), and nominate one or more for the I Love My Librarian award here: http://www.ilovelibraries.org/lovemylibrarian/home.cfm . From the site:

"Librarians in our nation’s 123,000 libraries make a difference in the lives of millions of Americans every day. Now is your chance to tell us why we should shine the spotlight on a librarian at your public, school, college, community college or university library. Nominate your librarian for the Carnegie Corporation of New York/New York Times I Love My Librarian Award!

Up to ten librarians will be honored. Each will receive $5,000 and be recognized at an awards ceremony hosted by The New York Times at TheTimesCenter in December 2008."

Now THIS is one event that I hope they get Oprah to visit! Deadline for nominations is October 15, so hurry. If you don't nominate that deserving librarian, who will?? Here's your chance!

Now, back to regularly scheduled adenoid cystic carcinoma information....

New palliative care scorecard

From the Washington Post: National Scorecard Ranks Palliative Care Across Country http://www.washingtonpost.com/wp-dyn/content/article/2008/10/02/AR2008100201725.html

'Palliative', according to the World Health Organization, http://www.who.int/cancer/palliative/definition/en/ , "provides relief from pain and other distressing symptoms; affirms life and regards dying as a normal process; intends to neither hasten or postpone death; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death; offers a support system to help the family cope during the patient's illness and in their own bereavement; uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; will enhance quality of life, and may also positively influence the course of illness; is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications."

You can check out your state's ranking at the Center to Advance Palliative Care site:
http://www.capc.org/

Adenoid cystic carcinoma in the news

An NYT book review covering 'A Race Like No Other', about the New York Marathon, mentions Harrie Bakst, an adenoid cystic carcinoma fighter who ran the marathon: http://www.nytimes.com/2008/10/05/books/review/Cheever-t.html?em

Benign

Man, that is one great word. Just got my results back from a liver MRI, where they were scoping out the latest lump that has been causing me pain. Turns out that the lump isn't in the liver, but very near it in the muscle, and is a mass, but not cancer. I am calling the end to this scan dance, and going out and breathing the fresh air. The pain - heck, I can deal with the pain. No problemo. Thanks for all of your support 'out there' - it kept me on the right path. Here's to all of us getting the 'benign' designation to our future scan dancing.

Newly diagnosed with Adenoid Cystic Carcinoma?

If you or someone you know has recently been diagnosed with adenoid cystic carcinoma, you are probably searching for information on this type of cancer, and what treatments may be available for the diagnosis of this rare cancer. Please don't feel like you have to locate the information by yourself - there are legions of information professionals ready to take on that mission for you. Call a librarian! Contact your local public library for help - searching for information at times of stress may not lead to the best sources that exist. (I am a librarian, and I didn't search out my own information - I asked the librarians at Nebraska's Consumer Health Information Resource Service for help http://www.unmc.edu/library/consumer/ ). You can find a local library in Canada, United States, or other countries - either public or medical - that serves consumers searching for health information by looking at MedlinePlus: http://www.nlm.nih.gov/medlineplus/libraries.html .

You could also look in MedlinePlus for local sources of help, health professionals, and information, by using the Go Local feature. For example: look at the Go Local box on the right side of the Cancer topic page in MedlinePlus http://www.nlm.nih.gov/medlineplus/cancer.html . Click on the drop-down menu, and select your state or area (not all states are in the database yet, but folks are working on it!). I select Nebraska. A page comes up, showing the state with county boundaries - I select Douglas, and can see a list of resources (including health professionals, facilities, and support groups) in Douglas County, regional services also serving Douglas County, and resources serving all of Nebraska.

Work closely with your health professionals to determine your best method of care available - don't just take the information you find on the Internet, not even on this blog, as a substitute for a professional's expert analysis of your very unique case. Use librarians if you need additional research information, but always discuss information you receive with your health care providers. And let me know if I can be of any help, information-wise.

Looking to the future strongly

Yes, I am doing just that. I have dragged myself out of the mental rut (thanks to very good friends and family members reaching down and helping me out of the muck), and need to look forward, not down into that 6 foot deep pit. As Merle Hamburger writes, "I'm Not Dead Yet" (Ah, Spamalot - I loved seeing that last year, pre-brain surgery, with all my coworkers! Playing the soundtrack as I write this post.). So, following the pattern of getting the heat pump in 2006, the new roof on the house and supporting a daughter living in Austria in 2007, we are buying into Berkshire Hathaway stock in 2008 as part of our retirement plan. Warren Buffett, a fellow Omahan, has just had his biography released: The Snowball: Warren Buffett and the Business of Life. That sounds like a good read for me after the doctor's visits slow down again.

Note the date on this post - based on today's stock market news and lack of vote on the bailout, one would think it was 1929 instead of Sept. 29, 2008. Yet, here we are, dipping our family's collective toes into the stock market waters. Tsk, tsk. Well, it is like this: some folks head to a mountain top or skydiving school when cancer knocks at their life's door - I figure I will be less risky and put more money into the (currently shaky) market. Oh, and I will probably buy a lottery ticket too, just to even things out. What better way to mark my intentions that life is going to keep on keeping on, than by investing in the great Berkshire Hathaway??! Plus, I will have the wonderful stockholders' meeting in Omaha next May to look forward to...

Anxiety lessened - back to work

Thanks for the messages - they help! I am much less like a deer in the headlights today - no reason to pick up the worry until told differently. I recommend the comments on the previous post, if you find yourself up at night, fretting or stewing. I also realized something yesterday - the other times I had 'something of interest' on scans, I hit the ativan. As I am drug-free (except for the thyroid med), I needed to step up the my coping actions that don't involve pharmaceuticals. I kicked them in today - walking farther than usual today really REALLY helped, as did being the library booth babe this morning for new faculty orientation. Answering other folks information access questions really got me out of my rut, and back to my usual perspective on all this kerfluffle.
Expect some information-rich posts soon.

Curled (metaphorically) in a fetal position, thanks to Adenoid Cystic Carcinoma

I have entered into another period of 'scan dancing' - that special time in a cancer patient's/survivor's/fighter's life when you get the concerned look on the doctor's face during a checkup, and they refer you to a scan to check things out further. After the dances I was put through in 2006 when they were trying to determine what had invaded my left cheek (mumps? lymphoma?), then again in 2007 when I was trying my best to grow a unicorn horn out of my radiated skull over my left ear, you would think that I would be used to the rhythm and be able to glide along, tra-la-la. During the day, I think I manage the steps well - I am productive, and am keeping up with duties at work. I drive vehicles, navigate traffic, purchase items, laugh at tv humor, and can attempt higher math problems. But outside of those 8 hours where my time is the boss' and my customers', I am a wreck. I haven't been able to be productive on projects at home and on my own computer. I can't even do well emailing friends at the moment. I have scheduled my crying times to coincide with showers or when family members are out of the house - since the parotid removal and radiation, I don't do crying well (huh - like I ever did before cancer). I try so hard "not to go there", to consider cancer as the reason when there are aches/pains/new lumps in various parts of my already lumpy body. Hey, I know that I could drop from a heart attack or be hit by a bus instead of dying due to Adenoid Cystic Carcinoma. I have been told I am lucky (by health care providers), that this is a slow cancer. (Yippee. Would have liked the lottery instead, guys.) I have become an expert patient on this disease, learning that just because you have a couple of tumors in the lungs or liver or bone, it isn't the end of the world - you can live for a decade or more with lumpy ACC lungs, according to research. So I should be able to handle an extra scan or two added to the regular scheduled ones, right? But sometimes it really gets to me, usually in the middle of the night, like now. Waiting for that other shoe to drop (because it usually does with this cancer), and having that diagnoses of metastases given to me, proving that the original treatment to prevent more cancer has failed. I knew when I went through the 6 weeks of radiation treatment that it may not keep cancer away, but it is the hope that it did that has kept me going to work daily, making plans for the future, taking on projects. I have learned to juggle life again with the added ball of 'past' cancer. I don't want to contemplate adding another ball of current cancer to the juggling collection, yet that is what I have to do on some level each time they shove me into an MRI tube or do a CT or chest xray or ultrasound. I just glance over to the guy tossing me the balls to juggle, and every once in a while he reaches over towards the shelf that has the Current Cancer ball, making me think he is going to toss it into the air for me. So far, he hasn't, but the anticipation is always there. The only way I have been able to do all of this to this point has been viewing myself as a breathing mulitmedia educational tool for students, residents, and faculty - there has to be some point to my going through all of this repeatedly, other than someone in the hospital winning the office pool by guessing correctly when the Cheeky Librarian grows her first met (I want to put money in that pool, guys - Lucky the dog needs a new bone!).
I see my family doc tomorrow to get some skinny on a questionable abdominal ultrasound result - I should know more in a few days about what the next steps will be, if there are any. Don't count that office pool finished yet - I still have some cheeky left, and I have a feeling that that is the best way to fight my personal cancer.