A mom with a child newly diagnosed with ACC needs your support

Sara posted a comment on one of my recent messages, and I include it here in case you missed it:

I just started a blog for myself. My son was diagnosed with ACC this week. I am struggling with sleeping and eating. I dont know what to do. We are waiting to hear from the doctor my son was assigned to at St. Jude, hopefully tomorrow. I would love to hear from anyone that knows about ACC or someone that wants to vent with me. We have a Caring Bridge site.
http://www.caringbridge.org/visit/jacobcooksey
Thank you for listening.
http://jacobsmommie.blogspot.com/
Sara

Cheekylibrarian, here - if you have any words of support for this mom, her email address is on the caring bridge blog, or you can leave comments on the blogspot blog. Please let her know she isn't alone. If you happen to be someone that survived having ACC as a kid, or have been the caregiver for a young person with ACC, I know you have unique information that you can share with her. Sending you the best, Sara - you are not alone in this.
PS - (added 2/5/10) Jacob's aunt also has a blog, and posted it in the comments to this message - bringing it up to the front for you:
http://teamjacobacc.blogspot.com

Adenoid Cystic Carcinoma in the news

A story from Bluefield, West Virginia about Lisa Poole, who was diagnosed with ACC in 2004:
Battle of a lifetime: Poole says don't give up after cancer diagnosis
http://www.bdtonline.com/local/local_story_024222827.html
Lisa knows personally how cancer can wreck your life - her ACC has returned, despite the inital radical surgery that (if I read the story correctly) removed her ability to speak. I really like her advice: "Scream, shout, then calm down, take a deep breath, and prepare for the battle of your life."
Lisa, keep urging others along, and I will cheer you on from here. We are in the battle together.

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

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

Adenoid Cystic Carcinoma in the news

Cancer is wicked. Having been diagnosed with cancer, I have kept hope that maybe I will be the only one in my family to have to go through this stuff, but that may not be the case. I now know of two moms that are not only battling their own cancer, but also that of their children.
Unfortunately, there are probably many more, but I found these amazing women by looking up ACC in the news.

The latest is Julie Duttine, and her son Jaden. If you are anywhere near South Hills (Pleasant Hills, PA, I think) on February 13th, please get some tickets for the show "'Til Death Do Us Part", the latest in the Late Night Catechism national shows. I think the take on both the matinee and the evening performances will go to the Duttines to TRY to offset the cancer treatment costs. Here is a link to the pdf of the order form, and here is a link to more on the Duttines, halfway down the page under "Catch the catechism". Julie also writes a blog, and posts updates on Jaden here: http://supahmommy.blogspot.com/search/label/jaden%20duttine . I will add her blog to the blog roll on the right side of this page. I wish for them standing room only crowds.

The other momma that is dealing with not only her ACC but her child's cancer is Sherry Rogers http://www.caringbridge.org/visit/sherryrogers. The great news on her blog is that her son's and her latest scans are looking good! Thank goodness, and I wish for them all a very boring and love-filled spring ahead.

A visit to the dietitian

I met with the dietitian that is a partner in my family medicine clinic, and got re-schooled on what a nutritional diet for a non-tasting person should look like. The dietitian took the food preferences I currently have (which are pretty good, overall) and put them into a food exchange set-up, so I can keep better track of what I am ingesting. I have also started recording what I eat on FitDay, a free online food diary site: http://fitday.com/. None of this is earth-shattering - I just needed to be reminded to increase my protein intake (had stopped doing the protein shakes before the holidays, and my energy level has suffered) and that even vegetables have calories (what?!? how rude!), and one cannot make a meal of nuts and berries every day without compensating for lower calorie options along the way. As I told a friend, even cows get fat on grass...

Sun dogs and Nebraska weather stats

Since most of our days are being taken up by the weather in some form here in Nebraska, I thought you might be interested in some trivia. It isn't supposed to get even to zero degrees F today, but that isn't the coldest maximum on record at this site:

http://www.crh.noaa.gov/oax/?n=climate-extremes

I also thought you would like to see the sun dogs that escorted us home last night.

This guy writes what I feel about having no taste

Roger Ebert blogs about his inability to eat, and what he really misses about it:
Nil by mouth http://blogs.suntimes.com/ebert/2010/01/nil_by_mouth.html

I started crying when I got to this part, because it is what I miss the most, too:
"What I miss is the society. Lunch and dinner are the two occasions when we most easily meet with friends and family. They're the first way we experience places far from home. Where we sit to regard the passing parade. How we learn indirectly of other cultures. When we feel good together. Meals are when we get a lot of our talking done -- probably most of our recreational talking. That's what I miss."

I attended one business dinner last summer when I couldn't speak as well as not eat - I won't ever do that again if I can help it.

Heard about the Special K Challenge? Be on the show!

Saw this call, and thought someone out there between the ages of 25 and 40 might be interested:
http://thevictoryproject.msn.com/BeOnTheShow.aspx

Welcoming 2010 with memory problems

Can't blame it on too much holiday cheer - no alcohol for quite a while. I refuse to go to "oh no, a brain tumor" - other biological things are in play that act on memory. Such as:
1. My thyroid has been low, it turns out, so my primary care doc is working to get me level again. Thyroid disease acts on memory.
2. Stress acts on memory, and we have been experiencing some run-of-the-mill type of stress that follows both adult kids living at home and all of us held captive by sub-zero temps.
3. I am of a certain age - pushing 50 doesn't mean I am elderly (unless I was born near the turn of the 20th century), but the brain has gone through a lot.
4. Disturbed sleep patterns act on memory - due to any of the above, my sleep has been poor over the past couple of months.
I feel like I am in a constant state of deja vu, feeling that I have already done something that sounds like a good thing to do or something that I need to get done by a certain time (bill paying, sending birthday cards, emailing thanks to someone for the difference they have made in my life), when I am probably experiencing the echo of the original thought. To cope, I have lists (and I am NOT a list person), with dates/times/other clues showing that I have done the deed that I need to do. The alternatives are that either the thing doesn't get done, since my swiss cheese brain thinks I have already done it (pretty bad that I can't trust my brain these days), or I do it twice (making my semi-duplicate initial messages to an old friend Facebook seem like a stalker, or resulting in co-workers getting multiple happy birthday wishes, which is happening to those born in January). Let's just say that I won't be applying for Jeopardy any time soon. And I rein in any comments or offering of facts when in groups - not sure if a) it has been said already, and/or b)I have the correct fact in hand. Since my professional day is spent verifying facts, my job performance is doing ok (as long as I follow the lists), but I couldn't play Trivial Pursuit right now if a set of synthetic taste-buds was the prize. The thing I noticed today was that I couldn't record entire telephone numbers - had to look up and record 18 of them for a handout I created. I could go back and forth and type in the number on the handout 3 or 4 digits at a time - not the entire 10 in one whack. (Cut and paste was not an option this time-just short term memory.)
The spouse suffers in this, too. I ask him multiple times about something coming up or what he might want for lunch, say, and he gets to thinking that I am a huge nag. Or I don't communicate with him at all about something that blows up later. Lucky for me, he is pretty patient. As for Lucky the dog, during this cold weather I stand at the open door to make sure I get him back inside when he is done with his abolutions - I can't risk leaving him forgotten on the porch in these temperatures.
(added 1/7/10) Thanks for all the comments - you all are great! Maybe my problems really stem from the central air handling unit that resides over my office: http://www.scientificamerican.com/article.cfm?id=ask-the-brains-background-noise .

Adenoid Cystic Carcinoma in the news

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

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

Hello from the Blizzard of 2009

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

Nothing funny about shingles

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

Recent literature on Adenoid Cystic Carcinoma

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

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

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

Going away to celebrate the 25th Anniversary

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

I wish everyone a fine Thanksgiving

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

Turning down comments, thanks to spammers

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

Adenoid Cystic Carcinoma in the news

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

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

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

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

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

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

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

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

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

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

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

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

What brought about the Cheeky Librarian blog?

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

Adenoid Cystic Carcinoma in the news

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

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

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

Adenoid Cystic Carcinoma in the news

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

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

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

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

Join Jeanne Sather and I in Omaha at Creighton!

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

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

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

Bathroom is DONE!

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

Adenoid Cystic Carcinoma in the news

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

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

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

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

How to read articles on health and healthcare

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

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

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

NIH is expanding the Rare Diseases Clinical Research Network

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

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

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

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

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

Man, I hope Keas has a librarian or two

I just saw this story on the New York Times site: Adding Health Advice to Online Medical Records http://www.nytimes.com/2009/10/06/technology/06bosworth.html?_r=1 .

The reporter, Steve Lohr, says in the article:

"The long-term answer to improving the health of the nation’s population and curbing costs, experts agree, is to help people make smarter decisions day in and day out about their own health. And the most powerful potential tool in the march toward intelligent consumerism in health care may be the Web."

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

Still looking to the future strongly

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

Adenoid Cystic Carcinoma in the news

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

Still repairing the home place

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

The answer: 746

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

Goodbye Patrick

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

Adenoid Cystic Carcinoma in the news

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

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

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

Preparing for winter

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

Catching up;

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

Maybe I COULD be a food critic

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

http://news.nationalgeographic.com/news/2009/09/090901-electronic-tongue.html

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

Life is just one adventure after another

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

Pain as a predictor of head/neck cancer survivorship

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

Cancer - becoming another chronic illness?

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

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

The Soul Seat - gotta get one

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

Still casting a shadow

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

Adenoid Cystic Carcinoma research article

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

Uneventful head/neck visit - now on yearly schedule

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

Pitting Cancer Support Organizations Against Each Other-Really?

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

video On Being An Oncologist

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

My voice update

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

Hope everyone gets to attend a family reunion this summer

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

New Adenoid Cystic Carcinoma blog

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

Parotid tumor in the news

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

Cure for Radiation Sickness Found?

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

http://www.ynetnews.com/articles/0,7340,L-3748014,00.html

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

Blogger's post about health insurance

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

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

Update on reduced-volume Cheeky

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

Another cancer blog with good information

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

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

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

Mommy bloggers are big - where are cancer bloggers?

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

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

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

Cheeky voice update

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

This could be the best obituary ever

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

http://obits.cleveland.com/obituaries/cleveland/obituary.aspx?n=nancy-lee-hixson&pid=129179739

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

Peter Tork talks about his ACC, in his own words

On the Washington Post site:

Peter Tork's Cancer, In His Own Words

http://voices.washingtonpost.com/checkup/2009/07/my_blog_last_week_about.html?hpid=sec-health

I for one wish him a great recovery, and many years ahead of making beautiful music!

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

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

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!)
-----
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.

-----

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: http://www.spohnc.org/order/order.htm#Pins. 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.

Jack and Jill Late Stage Cancer Foundation

Thanks to Merle Hamburger's blog, [I am not dead yet - I.N.D.Y.] http://www.merlehamburger.net/,
I learned about the Jack and Jill Late Stage Cancer Foundation, which strives to provide "memory opportunities for children who have a Mom or Dad with late-stage, limited life expectancy cancer." Check out this wonderful resource: http://jajf.org/
Thank you, Mr. Hamburger, and thanks to the folks that run that great foundation.

The Wellness Community to launch cancer internet talk radio program

[from a press releaase found at http://www.earthtimes.org/articles/show/
the-wellness-community-to-launch-cancer-internet-talk-radio-program,530712.shtml -th]

WASHINGTON, Sept. 8 /PRNewswire-USNewswire/ -- Kim Thiboldeaux, President & CEO
 of The Wellness Community (TWC), the nation's leader in providing empowering
 support and educational programs for people with cancer and their loved ones,
 will host a new Internet talk radio program, Frankly Speaking About Cancer
with The Wellness Community, beginning September 9 and airing every Tuesday
 at 1:00 pm PST/4:00 pm EDT on the VoiceAmerica(TM) network at www.voiceamerica.com.
[Direct link to the show's website: http://www.modavox.com/VoiceAmericaHealth/-th]

Frankly Speaking About Cancer with The Wellness Community will be the
 first Internet talk radio show on the VoiceAmerica(TM) Network's Health
 & Wellness Channel to focus specifically on how to live a better life with
 cancer.  The radio program will feature patients, physicians, researchers,
 social workers and caregivers with whom listeners can connect and draw inspiration.
 The program can also be downloaded as a podcast at
 http://www.modavox.com/voiceamericacms/WebModules/HostModaview.aspx?
HostId=546&ChannelId=5&Flag=1.

"The most exciting aspect of this show is the opportunity to connect listeners
 seeking hope and information with other cancer survivors and caregivers from
 all over the country. There is nothing more intimate and more hopeful than hearing
 in a person's own voice how they are overcoming the challenge of cancer," said Kim
Thiboldeaux, President & CEO of The Wellness Community, headquartered in Washington,
D.C.  

"In addition, we'll be bringing researchers, physicians and advocates to the program
 so listeners can stay informed and know the right questions to ask their health care
 team," Thiboldeaux added.  "For over 25 years, The Wellness Community has offered
 people living with cancer free social and emotional support programs, tailored
 publications and online support groups and information. This program is the latest
 in our effort to reach out in relevant ways to all people affected by cancer."

Frankly Speaking About Cancer will take the listener on a journey through topics
 that inform and inspire.  Episodes will tackle critical issues such as: achieving
 the best care and quality of life, new research and treatments, relieving stress
 and anxiety, life beyond treatment and talking to kids about cancer.  Every week,
 Kim Thiboldeaux will bring together noted physicians, researchers, nurses and social
 workers, as well as patients and caregivers from every walk of life to share their
 experiences and unique perspective.

Coming to terms

You would think that, 2 years post-diagnosis and treatment, a 47 year 0ld female of average intelligence would have accepted the new path she was traveling and act accordingly. But this hard-headed Missouri-bred female seems to require monthly reminders that life is not the same, and won't ever be the same, so get used to it, and ACT ACCORDINGLY. Humph.
What brings on this moment of belly-button contemplation are the virtual/digital/real piles of ideas and projects that I finally raised my head to look at this week. Oh, they have been there - you can count on that. But I was expert at figuring I would 'get right on that' when the dust cleared from whatever other project I was working on. That wouldn't be the definition of 'procrastination' now, would it?
The first to go - major stuff in my office. I figure the library building no longer looks like that leaning tower Italy is known for. I am not done, but at least some of the stuff is out and recycled.
Second to go - messages in my Gmail account. If Google works faster for you today, just send a donation in my name to the ACCRF - I got rid of over 3000 messages this morning that dated back to 2006. F0und some that I had missed recently - the demands at work and multitasking have not led to good eyeballs for me this year.
Next to go - the stuff in my house. OMG. I can't die right now - I would be mortified for folks to see the place. I am not too thrilled to share it with the family members I live with, but we can't seem to train Lucky the dog to vacuum and file. Go figure.
The hardest part of facing the 'toss this pile' activities: getting rid of the potential projects/ideas that will never be. And that is not cancer-specific - that applies to anyone at any point in their lives. It has been easier to do recently, since I have documented just what I did accomplish in the past year or two, despite the huge upheavals in my life. Who am I to think I would have accomplished more or better without the cancer knocking at my door? Talk about ego... So it is time to lighten the load, and continue to concentrate on what is important and what can be accomplished. Yes, I do say 'no' more now than I did before June 2006. And yes, I think I actually do more now than before (but that may be that ego talking), despite having to step out once in a while to shove my head into an MRI machine. I don't know if I will ever be a contender for the Living Simple prize (go ahead and say it here: NO), but if I can reduce the crap in my home, I will be happier. I am willing to live with the possibility that I will need something next week that I throw away today - it will give me something else to shrug my shoulders at, and say, "that's life."
While it is hard to think that I may never accomplish some projects - say, to get Suze Orman to do a show on finances after cancer has hit the family (I have been emailing her about that), or Oprah to do a show on the importance of consumer health information and medical librarians in general (yeah, been emailing her a bit, too), I am so very glad that some of what I have written here has been of help to individuals that find themselves on similar paths to mine. Thanks for sharing this side of my new life, and making comments. Your interaction with this blog is very important to current and future readers.
Now, back to getting rid of some of the crap.

More news about tomorrow's Stand Up 2 Cancer

You might remember my earlier post from August 3 (and amended on August 17) about the Stand Up 2 Cancer fundraiser set for tomorrow night on CBS, NBC, and ABC.
Here is a link to stories about the event that are currently on Google News:

http://news.google.com/?ned=us&ncl=1242010411&hl=en&topic=m

I doubt that I will be watching - not sure that show is anything I want to see. There is a part of me that figures if they donated the cost of an hour of each of the network times, the cost of an hour of each of the celebrities, and toss in the cost of an hour of hospitalization for each of the current cancer survivors, they wouldn't have had to have the show at all - just send the money to the non-profit arm that is going to disburse it, and get on with living. I do hope that they raise lots of money that goes for direct research (how about direct cost reimbursement??) for folks that have cancer. And I hope that none of the donations come from cancer patients - we have paid enough in time, money, blood and pain.
If you think I am two-faced about fund-raising, I probably am. I will promote and champion all day long the individuals who have banded together to raise money to fight cancer, most of the time working miracles while suffering great personal loss. I will send out the message when one of my fellow cancer sufferers needs money to put food on their table and anti-cancer drugs in their system. But I don't see the networks losing all that much, or needing anything - they are getting marketing time thanks to my pain, and I don't like it. I also don't like the whole ribbon (pink or any other color) campaigns. I am very consistent on that one - didn't take part in the whole yellow ribbon thingy when my husband was in the Gulf War (back in 1990-91), nor again when he was called up to serve in Iraq (was it 2004? he didn't get past Ft. Sill, thank goodness). There is nothing behind the piece of cloth/plastic to signify that anything has changed just because a ribbon has been pinned on. Do we need ribbons or colors (pink soup cans and cracker boxes, folks - c'mon, really?) to say that the wearer is 'aware', or is offering their support? Do we need an hour of tv time to raise money that most cancer patients (both in and out of treatment) will probably never ever see? Please forgive my rhetorical questions - the professor in me might be coming out a bit too much.

Itinerary for the 2nd Annual AttackACC Walk - Sept. 6th

[The following information comes from Alicia's big sis, a key operator in the Attack ACC organization. The photo to the left is of Alicia and her daughter, Courtney. Alicia and her fight against ACC are the reasons behind the AttackACC group. I congratulate all of them for the hard work they have done to get this event off the ground, not just one year but TWO! -Teri]


Friends and Family of Attack ACC: We are up to 180 runners/walkers!!!!!! 3 days and counting. Wishing you all a Happy and safe Labor Day holiday. Thank you so much for visiting our website and registering for our 2nd annual 5 mile Attack ACC walk/fun run. Also, thank you for all your research donations. If you have not yet signed up, we will continue taking registration online at http://www.attackacc.org or in person at Hickory Creek Junction on the day of the walk/run. If you register online after 9/4, please bring PayPal confirmation. T-shirts not guaranteed after 8/17. $20 Adults. Students $10. Strollers Free.

To see what fun is in store for you when you attend this exciting event, check out the 2007 walk/run slideshow video on YouTube. 100% of all donations will be sent to the University of Virginia Comprehensive Cancer Center, one of the few hospitals researching ACC.

Event will include: Entertainment courtesy of Radio station FM 99.9, Jumping Jack, Bean bags, Skiddles the Clown, Pinata, Face Painting, Temp Tattoos, Food/Refreshments, Popcorn, Volleyball, Softball, & Raffles.

If you can't make it in person, you can still donate to this wonderful cause! Through PayPal at the AttackACC website: http://www.attackacc.org/donate.htm , or mail your donation directly to: AttackACC, 11401 South Hamlin, Chicago, IL 60655.

Sept. 6th Itinerary
8am: Sign in and/or Day of Registration sign ups. Fruit/Coffee/Bagels/water available courtesy of Panera Bread & Starbucks 8am Silent auction bidding starts
8am-11am: Bean bag tournament sign up starts $10 per team. If you do not have a partner, we will provide one. Split the pot!
8:45am: Stretching & Warm up courtesy of Langrede Chiropractic - Dr. Alexis & Charlie Langrede, Tinley Park, IL
8:50am: Blessing. Chicago Police Officer John Harmening, brother-in-law to recently departed ACC friend Nancy Harmening, will kick off our race with the Bagpipes & Drums of the Emerald Society.
9am: Runners start
9:15am: Walkers Start
Noon: Bean Bag Tournament Food & Refreshments (Hot dogs, hamburgers, chips, popcorn, water).
Entertainment by FM 99.9
================
Please bring lawn chairs, if available. There will be tents, chairs, & tables available. Also, a restroom on site. In case of rain, there is a large pavillion.

Last year was a wonderful family event. Great food, great entertainment, fun activities, awesome exercise, a wonderful cause and many wonderful family & friends.

I want to advise everyone of our only issue last year. BEES!! It was not bad but they were there! We had a lot of sweets which we opted to discontinue this year in hopes of getting rid of that issue. The Village promises to spray the evening before and we are taking extra precautionary steps to control the bees. Parents with strollers may consider bringing a stroller netting.

Also, thank you so much for all the love and support showered upon the Almanza, Viktora, Santos & Wiszgowaty Family. Since last year, we have been blessed to join with additional ACC survivors. Last year, our family thought that we were alone. Since than we have found several ACC survivors in the area:
Genny Viktora, - Homer Glen, IL
Helen Wiszgowaty - Homer Glen, IL
Lualhati Santos - Joliet, IL
Ralph Alexander - Southwest suburbs, IL
Debbie South - suburbs, IL

We have also been blessed with many long distance survivors:
Jacque Curry - Kansas City, MO
Leigh Hlavec - Dallas, TX
Teresa Hartman - Omaha, NE
Please keep all our ACC survivors and our recently departed ACC friends: Daniel Nadwornik - Schaumburg, IL; and Nancy Harmening - Chicago, IL; in your prayers.
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If you are interested, please sign up to join our committee for future events. It is such a rewarding experience. This years event consists of 14 committee members, Alicia, Courtney, Donna, Anna, Gina, Rick, Ginny, Jim, Sheila, Carla, Joelle, Mark, John and I. You will be amazed at what 14 non-experienced but determined family & friends of Alicia & Genny can ACHIEVE!!!! Thank you for all your time and dedication.
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News coverage promoting this event: http://www.southtownstar.com/lifestyles/1132428,082908communitypage.article

It's not a Golden Scion, but it sure is a great car!

My newest car is thanks to number one daughter and her dad. The cool car is all the better because SHE DROVE DAD TO GO BUY IT!!! Number one son got his license last Wednesday, and it looks like number one daughter is not far behind. In the meantime, she can join me in driving this new shiny red number as we surf the web together.

Any Ninja Librarian sitings on your highway?

I just spent 24 hours in Kansas, turning heads on the way down and back while riding in the Cheekymobile and wearing the Ninja Librarian hat (the sun, it do burn when it shines.) Only gave minor heart attacks to two convenience store cashiers on the 500 mile round trip - the Cheekymobile is cheap on gas, luckily. Both cashiers recovered nicely from the shock of having a hooded figure walk through their doors. Had a great time in Kincaid/Garnett area to celebrate a special lady's 75th birthday, though spent too short a time with her. If I could just develop that teleportation machine...yeah, that's the ticket. Of course, I would want the version which would deliver me at my destination as a size 10.
It is so nice to celebrate life, and family, and friends. I told my friend that I was so happy that she was born - thanks to her being on Earth, I have a larger circle of family in this life, and love every one of them (particularly her daughter, whom I have known since 1976, meaning that we both have enough dirt on each other that we can never run for public office!) If you have a chance to celebrate life this weekend, run - don't walk - and go give and receive hugs and smiles. If you can't go, make them come to you (Follow Queen Elizabeth's example - make them come to you!) I get to do more celebrating life (more of the richness that I soaked up this weekend) when I visit Sedalia and see the moms on Sept 13 (watch for the Ninja Librarian on I-29 and I-70 - can't miss her!) Number one daughter is going to Missouri to take the ACT (for some UNKNOWN reason, Nebraska isn't giving that one, so we go where we need to), and number one son has the weekend off as well, so we will go see grandmas/moms (maybe even some aunts, uncles and a great-grandma). I am sure the weekend will involve lots of smiles and hugs, and memories to carry on for the year ahead.

My own update

It has been two years since I went through the operation, diagnosis, and the beginning series of radiation to get rid of ACC. If you are a new reader of this blog, head on down the page and start from the beginning. I tried to truthfully record my experiences and how I dealt with the side effects of treatment - I hope my words offer you some assistance on your own path.
As for me today - I am working full time as an academic medical librarian. Still can't taste much but have gained weight (I should be a size 3 for giving up meat, chocolate, and alcohol!! Meat - nasty beyond description; chocolate - like a crayon; and alcohol burns). Can't handle spices, not even black pepper (after talking with Dan from the Seattle area, this is most likely permanent.) Have good strength, thanks to the whey protein drink (still do one of those a day, to make sure I have protein levels up.) Some pain on the left side of my head where I was radiated, and some up over my left ear where I am missing the piece of skull they took out in November, but dealing with the pain is part of the ownership negotiation for a cancer patient post-treatment. I see the head/neck folks every 3 months (next visit is tomorrow), and the radiation oncologist every 6 months now. (My one rule about agreeing to see the doctors so frequently - there needs to be students/residents present - can't waste a rare cancer like this one.) I still cover up from the sun, but thanks to that habit to avoid pain, my scars are faint and nearly invisible (thank you, Coolibar.)
If you are a new visitor and have or know someone who has been diagnosed with ACC - know that you are not alone. Yes, this is rare. But not so rare that there isn't someone who might have experienced something similar to what you are going through. Let me know if I can get you in touch with some of those folks, or if you would like to know how to get a contact that would help you locate research information on this cancer.

Adenoid Cystic Carcinoma in the news

A story in the Daily InterLake about Tina LeDuc from Montana and her fight to get coverage for health care during treatment for ACC:

In the fight of her life, by Candace Chase
http://www.dailyinterlake.com/articles/2008/08/25/news/news01.txt

I am not sure universal health care would have solved her problem (I know too many bad stories from the UK and Germany about folks getting caught in care rationing or waiting for care past the point of usefulness), but something has to be done about getting coverage for healthcare.

Tina has a web site of her own: http://www.castlethornsoftware.com/TinaLeduc/. There is a comment board - send Tina some good words as she continues on her treatment path to get rid of ACC.

New FAQ on Adenoid Cystic Carcinoma at ACCRF

The ACC Research Foundation has published a new FAQ that may be useful if you or someone you know is newly diagnosed with Adenoid Cystic Carcinoma:
http://accrf.org/html/faq.php
Take a look at it and see if it helps answer some of your questions. This page is the result of at least three volunteers that worked together to get it up: Dan Dube', Kara Gelb, and myself. We are currently working on getting a reputable table of statistics on this rare cancer - stay tuned!
Also, feel free to send me a comment through this blog, if I can be of assistance as a patient that has experienced one form of Adenoid Cystic Carcinoma and its treatment. None of us are total experts on this disease - sadly, not even health professionals - but if enough of us communicate, we just might get a handle on it. (The comments sent through this blog end up in my email box before being published, in case you wonder where yours went after you sent it.)

We lost another cancer warrior

I found Leroy Sievers' blog right at the time I was diagnosed with Adenoid Cystic Carcinoma, and have read it ever since. I felt kicked in the gut when I read this yesterday:

Journalist, 'My Cancer' Blogger Leroy Sievers Dies
http://www.npr.org/templates/story/story.php?storyId=92028479

Rest in peace, brave warrior.

More about hospice care - from someone who knows much more than I

Thank goodness for Dr. Wendy S. Harpham's comment on my previous post about hospice care. I admit that I am pretty pragmatic about things - after all, when facing possible removal of my left ear, I was already scouting out sources that could create snap-on ears for each holiday (bling, I want bling, if I can't have the real thing). I approach my palliative care plan the same way and expect my caregivers to respect that viewpoint. However, I know that is not how everyone views their personal road. I am putting Dr. Harpham's comment here, so you can easily find the wonderful information she shares (I added direct links to the resources):

"I appreciate your perspective and advice. But your comments make it sound like hospice is just another practical decision in life.

Hospice is a highly-charged emotional word and concept. Many healthy people - and I venture most people who are newly diagnosed with life-threatening illness - do not want to think about hospice, let alone discuss it.

I am a vocal advocate for hospice care. In order for patients and their families to optimize use of this healing service, we need to acknowledge and address the understandable emotional obstacles to considering or accepting hospice care. The NPR blog by Leroy Sievers has been a prime example of struggle.

I wrote a column about hospice for professionals in oncology that can be accessed at:
http://www.oncology-times.com/pt/pt-core/template-journal/oncotimes/media/WendyHarpham-H%20Word-OT-Dec252006.pdf

With hope, Wendy"

Added August 12, 2008 - Here is a link to Leroy Sievers latest post regarding his decision about hospice care and the over 100 comments on it: http://www.npr.org/blogs/mycancer/2008/08/a_decision_made.html#commentSection (cheeky)

In case you are considering hospice care

Did you know that I once worked for a multi-disciplinary rural hospice? I think it was the only one in the nation at the time (early 90's). I learned about the new duties while I was at an MCMLA (medical librarian) meeting in Colorado Springs, during a break when I called back to the office to find out if I had any messages - what a way to learn about a complete job change! Anyway, since those days, and because of some personal experience with family members and close friends who have used hospice, I have always told folks to consider it when the care involved when living with a life-threatening illness gets to be too much. Personally, I plan to outlive hospice - I don't want to sign up for hospice 3 days before I die, in other words. The service and care that hospice professionals offer frees up the family members to REALLY spend time with the person who is ill, and to pay attention to the important things that need to be done and said those during those special last months. Last thing I want is my loved ones worrying about stuff that a hospice professional can take care of, instead of us talking together.
Information about hospice can be found here: http://www.hospicenet.org/. There are in-patient hospice centers around, in case you need one - check with your doctor. The best one in the world, in my opinion, and one that I had the honor of visiting, is the San Diego Hospice: http://www.sdhospice.org/. And, speaking about your doctor - you might want to check early as to their personal view of hospice, since they are the ones that can sign you into one. If you have a doctor that doesn't believe in the usefulness of hospice, or might actually have something against hospice (viewing it as 'giving up', for example), you might want to change doctors, or be very clear on your wishes from the start. The saddest stories I hear are the ones about people experiencing terminal illness, and they get placed in hospice the day before or two weeks before they die. I am glad that they went at all, but all of the wonderful support that hospice offers was never offered to them - what a shame.
I have a few more end-of-life topics that I will be posting on. No, this isn't any hint on my personal health information - I am doing fine. I just know that some things are too important not to talk about, even on a blog.

Adenoid Cystic Carcinoma in the news

Tim Pearson, resident of New Zealand, is featured in the Sunday Star Times in an article written by Karen Kotze: Death verdict held by lust for life http://www.stuff.co.nz/stuff/sundaystartimes/auckland/4646971a6016.html. Even though his ACC has progressed dramatically, Mr. Pearson keeps his sense of humor and love for life and his family. As a fellow ACC fighter, I thank him for sharing his strength with the rest of us, and wish him the very best. Should I come into a pot of money in this life, I would love to start sending checks out to every person diagnosed with ACC - this man should be able to have his cable tv, for goodness sake!

Ninja Librarian is back

I am very disappointed that I am covering up again, but I couldn't hack the pain of the sun hitting my neck, even when wearing my big floppy black hat, and the pashmina knock-off was rubbing my skin raw (I am such a weenie). I bit the bullet and pulled out the Coolibar hat from the closet. Lucky for me, my family is not embarrassed by my head coverings (probably by other things I do, but not what I wear on my head!) Face it - I am glad that I had the smarts to buy the ninja hat when I saw it. It has been a life saver, and still allows me to drive around and go out in the sun.

I went looking on the Coolibar site to find the link to the hat, but I don't think they sell it anymore. They do sell a face drape that would fit under any hat: http://www.coolibar.com/01009.html . They also sell a Shade Wrap, which might be easier on my skin than the woven pashmina scarf: http://www.coolibar.com/01011.html . Big sale going on now at their site - if you are in the market for sun protection clothing (and who isn't, these days?), give it a look-see.

The place to be on Sept 6 is Mokena, IL to fight ACC

Attack ACC's 2nd Annual 5 mile Walk/Fun Run will take place on Sept 6 at Hickory Creek Junction in Mokena, IL. More information about the walk can be found on this page: http://www.triblocal.com/Orland_Hills/Detail_View/view.html?type=events&action=detail&sub_id=25822 . Attack ACC was started by Alicia Almanza's daughter - what a tribute! Here is a map to Mokena - let me know if anyone is taking a bus, because I just might ride along! Thinking of you all -Cheeky.

More about money

On the night of September 5th you may not want to be watching CBS, ABC, or NBC, if you want to avoid a show about cancer. Stand Up To Cancer will be on then, 8pm et/pt. Here is the web site:
http://www.standup2cancer.org/. I just found the site, and am still trying to find out where the money goes after they raise it. They have a shopping site - but I couldn't get it to open up (if it is open yet), so I don't know what they are selling. There is a contest to be present among the celebrity phone bank that night (I guess they could have just gone to the local ACS office and rounded us up to do the work, like folks do immigrant day laborers). And there is a Launch a Star area, where (this is heartbreaking to me) folks can buy a star and put someone's name on it, adding to the Constellation. That is a group I sure don't want to be among - I don't want to be 'remembered' at any Relay for Life, either. There are already stars purchased in the constellation, but I didn't check them to see if I knew anyone. 12,000,000 of us in the US have had cancer diagnosed - I am not sure they have big enough servers to put all those names in. And I would rather you spent your dollar on something else locally. Look around - your community has human service agencies that support folks with chronic conditions - donate there. Look around your neighborhood and church - someone that is going through cancer treatment could use some concrete help. Take their kids to soccer practice or bring dinner by for the rest of the family. Buy a gas card for someone making daily visits to radiation or regular visits for chemo. Visit your local cancer research center and bring pizza for the hard working researchers, so they can concentrate on the life-saving work instead of their growling tummies. (Now THAT is a group I would like to champion in a tv show or big screen movie - the scientists that too often anonymously manage herds of mice and microbes, running clinical trials on humans, hunting for that answer to either better treat or cure cancer.) I just don't know what celebrities are going to do to actually get money to the research labs. Their press releases http://www.standup2cancer.org/theshow/press don't address the funding pipeline question (hope that money will be raised, but it goes where?). There is a great section about emailing congress to increase funding to NIH http://www.standup2cancer.org/getinvolved/congress - I am glad that they put that in there. Backing for the program seems to be from the Entertainment Industry Foundation http://www.eifoundation.org/, with a grateful thank you to Ken Ziffren, a prominent Hollywood lawyer. Congratulations for them getting some anti-cancer entertainment together in this dark fall TV period resulting from the writers' strike. My heart will be with all present and viewing that have been touched by cancer personally. But I am not sure how much all of the hoopla will impact me or other cancer fighters. Question - what commercials are going to be run during a special like this? The mind boggles.
(added August 17, 2008 - cheeky) Ok, I know more about this fund-raising effort as the days go by, and it is starting to look better than it did at first glance. I recently located additional information on how funds raised by the SU2C effort will be used at the American Association for Cancer Research site: http://www.aacr.org/home/public--media/stand-up-to-cancer/grant-giving-model-su2c.aspx. Submit your ideas if you have a plan for a "Dream Team". I wish the fund raising effort and future projects that come of it all the best.

Admit it - it is all about the money.

Money - cancer eats it like it eats into our bodies. Millions of people around the world donate money for cancer, but the money usually goes for research, not to the individual patients. Research is necessary, but I pray for the day when cancer patients - people currently undergoing treatment and life-wrenching decisions - don't have to have spaghetti fund raisers or bake sales or pawn their possessions to pay for the humongous costs involved with treatment.
I was blessed with a good job, good insurance (a benefit I considered years ago during my job interview before even salary amount, thank goodness), a lower standard of living, and very generous friends, so I kept my house, had transportation, and wonderful emotional support. Not all cancer patients are that lucky. I have learned of a woman through the Assertive Patient blog that is in need of money. Here is the link to her story, which links to a PayPal account should you wish to donate directly: http://www.assertivepatient.com/2008/08/send-money-an-o.html.
I don't want her or anyone else to wait on donations from strangers, so I went out hunting down sources of financial help. I didn't find many.

Since the woman in this instance has a small child, I figured Medicaid might also come into assistance (the story says she is already on disability). She could check here:
http://www1.dshs.wa.gov/. Interesting that the Washington state DHHS slogan is "People helping people". I sure hope that is true.

Here is a page of links at the National Cancer Institute that may or may not be helpful. Hey folks, if any of these web resources don't link to enough information, please give them feedback and ask for more specific links - humans are on the other end of most websites, and they need to know if they are providing a good service or not. http://www.cancer.gov/cancertopics/support.

The American Cancer Society helps a bit, but I think only while you are in current treatment. http://www.cancer.org/docroot/MIT/content/MIT_3_2X_Medical_Insurance_and_Financial_Assistance_for_the_Cancer_Patient.asp

The patient information site by the American Society of Clinical Oncology lists some links for financial assistance. (They should - it is in their best interest to make sure we can pay for their services, folks.) http://www.cancer.net/patient/Library/Cancer.Net+Features/Financial+Support+Resources. The page hasn't been updated since 2005, though, so I won't hold my breath that there are actual helpful links there.

There is an assistance page at the CancerCare website: http://www.cancercare.org/get_help/assistance/index.php.

The National Coalition for Cancer Survivorship is pretty silent about actual service points for financial assistance - interesting, since that is probably the BIGGEST issue for survivors: http://www.canceradvocacy.org/.

The Patient Advocate Foundation offers personalized assistance, so they may be able to identify other sources of financial help (someone let me know if that is true - not apparent from their website): http://www.patientadvocate.org/.

Thanks to Whitney's reminder to me (her comment is attached to this post), please remember that in some of the larger communities, you can contact 211 and ask for help in locating assistance and support. You can locate your 211 call center on this page: http://211.org/ReferWeb/MainForm.aspx.

Of course, anyone facing cancer or having survived cancer should talk with the social work department of the hospital where they received care, and ask for direct assistance with locating financial support. Don't just let them hand you a big binder of information - sit with them and go over the options in person. Heck, if we could figure out what sources exist, we would have done it on our own. Keep the social workers employed, and ask them to focus on your personal situation. That is what they went to school for, after all.

This search for and collecting continuing financial support sources for cancer survivors and their families, REAL financial support, appears to be a great grant opportunity for someone. With nearly 12,000,000 cancer patient survivors out there in the US, a lot of us need financial support even AFTER treatment - we shouldn't have to cobble sources together on our own. We need to demand those that currently collect and disseminate financial information related to in-treatment issues to do the same for after-treatment support. The need for financial support does not end the last time you go behind the radiation door (where no one else goes with you), or when the last round of chemo is taken. It is ongoing. And with us living longer after treatment, it is going to be an even larger issue. As I said, cancer research needs money to continue to make headway - but survivors need potentially a dollar-for-dollar match to those research funds to get back to living after treatment. Can you imagine what it would be like if on the day you were diagnosed with life-changing cancer, they cut you a check for the anticipated out-of-pocket costs related to being a cancer survivor for the next 10 years? You could create a fund like a 401k to keep up with the extra costs, particularly if you aren't able to continue working, and keep your head above water/sleep well at night/heal without worry. Yeah, I would like to see that happen.