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.
--------------
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.
------------------
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.

Pathway to peace at Lauritzen Gardens in Omaha

The weekend before the trip to Seattle found me at the local botanical gardens: https://www.omahabotanicalgardens.org/. For your viewing pleasure, and so you can download the image to your desktop and trick your overworked mind into thinking you too are walking along the path in Omaha, here is one of the photos from that visit. If you are ever in the Omaha area, stop by and check this site out - they have a wonderful garden train display that is outside in the warmer weather, and inside in winter.

Liquid salvation - yep, you read correctly.

The Assertive Cancer Patient blog author and I enjoyed shopping and eating at an Asian supermarket (calling it a store is not nearly descriptive enough for all the things it holds!): http://www.uwajimaya.com/. One of the things I saw on sale: Liquid Salvation. Sorry, I didn't buy any to bring home, but it is kind of comforting to know it is out there if we want it...

Fun in Seattle equals running around in a convertible.

Ah, the open sky and the cool weather (compared to Omaha weather in the summer, ANYWHERE can be considered cooler) - both best enjoyed with a friend in an open-topped car. Lucky for me, The Assertive Cancer Patient blog author has a 64 Corvair. This picture shows just the corner of the windshield as I was rubbernecking at the beautiful buildings in downtown Seattle. I bought a 'pashmina' (a knock-off, not the real thing) to wrap around my head to keep the sun off my left face and neck, and the wind out of my left ear - it worked great. Even now, walking from my car to work and around campus, it works well in Omaha - doesn't heat up even in direct sun.

I have finally met a fellow ACC fighter in person!

I was lucky enough last week while in Seattle to meet in person another ACC fighter, Dan. The picture shows us in a (probably endangered) Starbucks. We met to continue the work we had begun on some patient support information for the ACCRF site. No doubt he would argue this point, but I think he is a great model for handling what this disease throws at you over the years. Go Dan, go! I am glad to count myself in your team of supporters!

Still recovering from Seattle trip and experiences - adding posts soon

Sorry to keep you in suspense about what transpired in Seattle - lack of hours, limits of my own energy, and a computer that is now in another's bedroom has led to this unintended silence. For your reading enjoyment, here is a link to the Seattle PI newspaper article that highlighted our blogger reunion: http://seattlepi.nwsource.com/health/372201_cancerbloggers25.html. More posts to come!

Leaving on a jet plane next week - to join bloggers in Seattle!

The Cancer Bloggers Reunion takes place next week in Seattle. Here is an announcement of one of the events we will participate in as a panel:

"Why We Blog": At Cancer Lifeline, July 25




Cancer Lifeline presents:

“Why We Blog”—A Panel Discussion
Friday, July 25, 1:00 p.m. to 3 p.m.
Cancer Lifeline’s Dorothy S. O'Brien Center at Greenlake

Cancer Lifeline will host a panel of cancer bloggers from around the country on July 25 at Cancer Lifeline’s Dorothy S. O'Brien Center, located in the Greenlake neighborhood, at 6522 Fremont Avenue North.

The bloggers include two women living with metastatic breast cancer: Deanna Kingston, who is an associate professor of anthropology at Oregon State University in Corvallis and an Oregonian of King Island Inupiaq Eskimo descent. Her blog is: Dee’s Updates. Also, Seattle blogger Jeanne Sather, who organized this event; her blog is The Assertive Cancer Patient.

The third is Teresa Hartman, who has a very rare cancer, adenoid cystic carcinoma. She is an associate professor at the University of Nebraska Medical Center, where her primary area of research is health information literacy. She blogs as The Cheeky Librarian.

The fourth blogger is a leukemia survivor who is two years post-transplant, Debby Greer-Costello, of San Antonio, Texas. She blogs as Debutaunt.

The topic for the panel is “Why We Blog.” The discussion will include:

• Types of cancer blogs
• Reasons to blog when you have cancer
• What we gain: community, friends, answers to our questions
• Privacy and blogging
• Making money with a blog
• Men, women, cancer, sex, and blogging
• And more.

The presentation is free and open to the public. Go to Cancer Lifeline’s Web site to register: Cancer Lifeline.

Cancer Lifeline provides emotional support, classes and exercise programs in the Puget Sound Area. We serve all people living with cancer--patients, family members, and co-workers. All our programs and services are free of charge.

For more information visit our Web site, Cancer Lifeline.

Clinical trial using psilocybin is seeking volunteers

Johns Hopkins University researchers are calling for volunteers:
Scientific Study of Self-exploration and personal meaning
http://www.bpru.org/cancer/insight/

Here is a link to the collected stories on the research to date at Google:

http://news.google.com/?ned=us&ncl=1225281611&hl=en&topic=m

Hey, if it will help, go for it. I figure where I live, I will continue to use family and friend support to get through the anxiety in the daytime - at night, that is another matter altogether, but one deals with what one is dealt.

Stormy weather, tree damage, and power outages hold no fear for me anymore

I went in on Thursday last week to check on a pulled muscle in my chest, and ended up with a surprise chest x-ray, CT scan and blood tests to make sure there were no mets that had crept up when we weren't looking. My family physician (the best at UNMC, hands down) joked with me that she might be calling for a CT scan for what might not turn out to be anything more than a case of shingles - but the circumstances called for it (thanks, Dr. P). About 4:15 on Friday afternoon, we were told that the report showed no cancer, nothing out of the ordinary since my last CT scan in 2006. Pretty cool news (thanks for meeting with us, Lois). About 4:45, we were at a grocery store, and the tornado warning sirens went off. Nothing out of the ordinary in the midwest on a summer day - you just take cover. But then the wind came up, and the rain and the hail. The parking lot looked like a hurricane shot on the Weather Channel - you could not see your car that was 15 feet from the store window. Trees were bent over by the wind like a row of Allen wrenches. Power went out. Tried the cell phone to reach number one son, but it was busy, meaning lines were clogged. Storm passed, and with the remaining power trickling to the computers in the store, we checked out and drove home. What greeted us there was a new skylight in our kitchen, courtesy of the maple tree in the back yard. When I surveyed the damage, it wasn't that big a deal for me. Paying an arborist to remove the tree from the roof - sure, no problem. Locating and paying for someone to repair the hole in the ceiling and sheathing - you bet, we will do it. After what we had faced for 24 hours, my 36 hours with no power was a walk in the park. We now have power, unlike many in Omaha at the moment. But lack of power did not keep me from The Good Life. I doubt anything ever will. My appreciation goes to our Omaha Public Power District for their round the clock work, and the Arbor One Tree Service (no website that I could find) that labored to remove the trunk that was giving me a rustic theme to my kitchen. And of course to the health professionals that once again looked me over, and didn't find anything of interest. Man, I love being boring to health professionals. Here's to everyone getting back to their normal life. I am so glad I get to do that, too.

FDA Warns Individuals and Firms to Stop Selling Fake Cancer "Cures"

A news release from the FDA: http://www.fda.gov/bbs/topics/NEWS/2008/NEW01852.html .
They have sent letters to 23 U.S. companies and 2 foreign individuals to stop selling fake cancer cures on the web. They also link to 125 fake 'cures' that consumers should avoid at this site: http://www.fda.gov/cder/news/fakecancercures.htm .

I know now what it desperate feels like, and wanting to do ANYTHING to make the cancer go away. I usually joke that if someone had told me 2 years ago that I could cure it by dancing naked in the moonlight, I would have done it. But before you send money for something, or take advice without talking with your health care professional first, please contact a library to find out if the information you are looking at is valid. Believe me, if someone is successful in 'curing' cancer with an alternate treatment, I will be shouting it from the rooftops. Until that day, buyer beware. That stuff you see offered on the 'Net could do much more harm to you than the cancer or traditional treatment can do.

Update on recent activities

First, the storms have been coming pretty regularly through Omaha, but nothing bad has happened at our place. The worst thing that happens is that the computer and cable modem are unplugged, in the hopes that any lightning will not find its way in to cause damage.
Second, I attended a Cancer Survivorship conference for health professionals (attending as a member of the medical center faculty) - more on that momentous occasion in another post.
Third, less than 30 days until Number One Daughter comes back from her year away as an exchange student in Austria. Yep, I am happy, and looking forward to that homecoming.
Finally, I have had an MRI and a head/neck surgeon visit recently - and nothing was out of the ordinary. I will claim that No Evident Disease (NED), thank you. The only thing that I wished hadn't happened during the visit: the physician assistant, who is new enough to maybe not know how to take me, made the comment that maybe I 'knew too much' about my cancer and the many ways it can sneak back in. Possibly she thought because I knew about the possibilities, I would be worrying for nothing. On the contrary-knowing things keeps me from worrying. It is when the health professionals are not straight with me that I spend sleepless nights, wondering what is coming next. I think we will get along fine - she and I will meet again in July - but I wish I had had someone with me during the visit to bolster my will to address her statement directly. I agree with a statement in a book I reviewed for the recent Cancer Survivor's Day (June 1), 100 Questions & Answers About Life After Cancer : anyone who has had cancer should get to ask as much about signs and symptoms as they wish, without being considered a hypochondriac. Face it - we have different lives after diagnosis and treatment, and those differences need to be respected.

Adenoid Cystic Carcinoma in the news

Ms. Betty Leubner, a 40 year survivor with Adenoid Cystic Carcinoma, passed away last Tuesday. Here is a story about her in the Milwaukee Journal Sentinel, by Amy Rabideau Silvers:
http://www.jsonline.com/story/index.aspx?id=755096 .

Here is a link to her patient profile at the TomoTherapy (she was the first head/neck cancer patient to receive this type of focused radiation in 2005) website: http://www.tomotherapy.com/patient/profiles/pt_bleubner/

Please note - ACC wasn't the cause of her death. May we all have 40 years from the date of our diagnosis, and live like Ms. Leubner did.

Adenoid Cystic Carcinoma in the news

I have to remember to search the news for the other term used for adenoid cystic carcinoma: adenocystic carcinoma. Using the alternative term, I found the following items about Milton McPike, of Madison, Wisconsin:

Cancer forces McPike to resign from UW Board of Regents: http://www.madisoneast1984.com/blog/2008/03/cancer-forces-mcpike-to-resign-from-uw.html

Mr. McPike passed away the last weekend in March. Here is a tribute to him by Heather in Wisconsin: Thursday Thirteen #53: Milton McPike http://wordtrix.blogspot.com/2008/04/thursday-thirteen-53-milton-mcpike.html

A very great man.

The Assertive Cancer Patient blog mentioned in a CNN article

I just saw this article over at CNN:
After Cancer Diagnosis, What Comes Next?
http://www.cnn.com/2008/HEALTH/conditions/05/21/ep.cancer.resources/

It mentions Jeanne Sather's blog http://assertivepatient.com as a source of information - I totally agree!

The only sites that they don't mention in the article, that they should have, are:

MedlinePlus http://medlineplus.gov
Use this site for information on health topics, drug information, encyclopedia articles, and directories for health care professionals and organizations.

Go Local http://medlineplus.gov/golocal
Go to this site and check to see if your state is listed. You can use this directory to locate health professionals, services, organizations, and support groups that are nearest to you or your loved ones.

Finally, if you have had a recent diagnosis, PLEASE ask a librarian for assistance in searching for information. None of us should be Googling into the middle of the night, looking for our own health information. We need evaluated, top-quality information - and librarians do that. After you are well on your way to healing, THEN you can Google your heart out, and won't be so scared from the tales you read online. When I was first diagnosed, I only used librarians - after radiation treatment finished, THEN I went out on the web to see what I could see, and to figure out how to handle survivorship. You can find a library at this link: http://www.nlm.nih.gov/medlineplus/libraries.html .

Press release about interim results on a clinical trial involving 2 ACC patients

Genentech Provides Update On Studies Of Investigational Biooncology Agents To Be Presented At The American Society Of Clinical Oncology Meeting

South San Francisco, Calif. -- May 15, 2008 -- Genentech, Inc. (NYSE:DNA) today announced results from studies of several investigational agents targeting the biological cancer pathways of HER (human epidermal growth factor receptor) signaling, Hedgehog signaling and apoptosis (programmed cell death). These data will be presented during the 44th Annual Meeting of the American Society of Clinical Oncology (ASCO) taking place May 30 to June 3 in Chicago. Results will be presented from a Phase II study of pertuzumab in HER2-positive metastatic breast cancer and Phase I studies of trastuzumab-DM1 (T-DM1), an investigational HER2 antibody-drug conjugate; GDC-0449, a small molecule antagonist of the Hedgehog pathway [bold type by th]; and two novel agents designed to trigger apoptosis, ABT-263 and Apo2L/TRAIL. "Early clinical data with these investigational anti-cancer agents reflects our significant research effort and demonstrates Genentech's commitment to discovering the next cancer breakthroughs," said Susan Desmond-Hellmann, M.D., M.P.H., president, Product Development. "By exploring new cellular targets and cancer growth pathways, we hope this research may ultimately lead to improved treatment options for people with cancer."

A First-in-Human, First-in-Class, Phase I Study of Systemic Hedgehog Pathway Antagonist, GDC- 0449, in Patients with Advanced Solid Tumors (Abstract #3516)
Patricia LoRusso, D.O., Karmanos Cancer Center, Wayne State University, Detroit, Mich.; Oral Presentation; Sunday, June 1, 2008, 8:00 a.m. - 8:15 a.m. CDT; W375a

Interim results will be presented from a Phase I study evaluating the safety, tolerability and pharmacokinetic profile of GDC-0449, a small molecule antagonist of the Hedgehog signaling pathway, in 19 patients with refractory solid tumors that have not responded to prior treatment. GDC-0449 demonstrated a favorable pharmacokinetic profile, with high sustained micromolar plasma concentrations and a terminal half-life of greater than seven days. No dose-limiting adverse events were observed at the three dose levels of GDC-0449 studied.

Two cases of reversible drug-related Grade 3 hyponatremia (lowered serum sodium level) and one case of reversible Grade 3 drug-related fatigue were reported. Stable disease was achieved in two patients with adenocystic carcinoma (a rare cancer most commonly found in the salivary glands) and partial responses were observed during this study in two patients with advanced basal cell carcinoma (BCC).

Data were reported earlier this year (American Association for Cancer Research, April 2008) for nine patients with advanced BCC, including the two advanced BCC patients described here, from an expansion cohort of this study. Stable disease or partial responses were achieved in eight out of nine patients (six partial responses, two stable disease) without significant toxicity.

This is the first study to evaluate a systemic Hedgehog antagonist in human clinical trials. Abnormal activation of the Hedgehog pathway appears to be an important mechanism for tumors to survive and grow. Mutations of the Hedgehog pathway have been implicated in the development of several tumors, such as BCC. Additionally, the progression of several solid tumor cancers has been associated with over-expression of the Hedgehog ligand, including colorectal cancer.

Genentech is initiating three Phase II studies of GDC-0449 this year. A Phase II study in first-line metastatic colorectal cancer began enrolling patients in Q2 2008 and other studies are planned in advanced BCC and an advanced epithelial tumor. Genentech is developing GDC-0449 under a collaboration agreement with Curis, Inc.

About Genentech
Founded more than 30 years ago, Genentech is a leading biotechnology company that discovers, develops, manufactures and commercializes medicines for patients with significant unmet medical needs. The company has headquarters in South San Francisco, California and is listed on the New York Stock Exchange under the symbol DNA. For additional information about the company, please visit http://www.gene.com.

For the full prescribing information and Boxed Warnings for Avastin, Herceptin and Rituxan please visit http://www.gene.com.

URL for full press release: http://www.gene.com/gene/news/press-releases/display.do?method=detail&id=11268

URL for Curis press release:
http://www.businesswire.com/portal/site/google/?ndmViewId=news_view&newsId=20080602005498&newsLang=en

Adenoid Cystic Carcinoma fighter in the news

Pamela Maxwell, as reported in the Lincolnshire Echo (UK), is adding to the fight against ACC by participating as a guinea pig for immunotherapy research.

Quote: "Whatever help I can be to future research I'm really pleased to give.
I feel that I have been part of something quite amazing and I think it has probably helped me most by keeping me emotionally well."

You, Ms. Maxwell, and all others that are participating in clinical trials, are my hero. Thank you for giving the rest of us a model to follow.

Links to the complete story:
http://www.thisislincolnshire.co.uk/displayNode.jsp?nodeId=156153&command=displayContent&sourceNode=156136&contentPK=20599022&moduleName=InternalSearch&formname=sidebarsearch
http://www.thisislincolnshire.co.uk/displayNode.jsp?nodeId=156153&command=displayContent&sourceNode=156136&contentPK=20598750&moduleName=InternalSearch&formname=sidebarsearch
http://www.thisislincolnshire.co.uk/displayNode.jsp?nodeId=156153&command=displayContent&sourceNode=156136&contentPK=20599079&moduleName=InternalSearch&formname=sidebarsearch

Adenoid Cystic Carcinoma in the news

A powerful story about students living after cancer in The University Daily Kansan, including Jessica Roark, who was diagnosed with Adenoid Cystic Carcinoma in her tear duct:

Living In Remission http://www.kansan.com/stories/2008/may/08/living_remission/?news , by Mary Sorrick.

Thank you, Jessica, for allowing your story to be told. And congratulations to all of the KU (and other college) cancer survivors for "keepin' on". You are proving that life is what matters.

Entries Invited for Lilly Oncology on Canvas Art Competition

[This contest includes friends of cancer patients, so you are eligible to enter. Thanks to Siobhan for spotting this and sharing!-th]

Entries Invited for Lilly Oncology on Canvas Art Competition
Deadline: June 30, 2008
The Lilly Oncology on Canvas: Expressions of a Cancer Journey Art Competition and Exhibition was developed by Eli Lilly and Company ( http://www.lilly.com/ ) in 2004 as a way to honor the journeys people embark upon when confronted with a cancer diagnosis. The 2008 competition invites U.S. and Puerto Rico residents who have been diagnosed with cancer, their health care providers, family members, friends, and caregivers to submit their cancer-inspired artwork. http://fconline.foundationcenter.org/pnd/15012904/lillyoncology
Copyright (c) 2000-2008, the Foundation Center. All rights reserved. Permission to use, copy, and/or distribute this document in whole or in part for non-commercial purposes without fee is hereby granted provided that this notice and appropriate credit to the Foundation Center is included in all copies. RFP Bulletin (May 9, 2008)

Roadtrip update

I highly recommend a roadtrip to somewhere you have always planned to go, just to clear the cobwebs out. Don't worry about high gas prices - they look like they will always be with us. I figure I spent less on gas than two round-trip plane tickets, anyway.
We (my mom and I) headed south to Gulf Shores, Alabama (http://www.gulfshores.com/), staying for 4 days and 3 nights at a beach front condo managed by Meyer Realty (http://www.meyerre.com/property/Lani_Kai_Village_2_228). The condo was just as nice as it was presented on the website, putting us closer to the ocean that we had thought possible outside of a cruise! I haven't signed up for another visit yet, but the last week of April sure made a nice time to visit the beach - after the Spring Breakers had left, and before the Memorial Day onslaught of tourists. While at Gulf Shores, we shopped enough at Foley, Alabama (http://www.tangeroutlet.com/foley , http://www.oldtimepottery.com/template.php?page=locations&state=alabama ) to get on the good side of the Chamber of Commerce! We ate wonderful seafood - the best was the Royal Reds, the local shrimp (huge!). We took two days to drive down from Missouri, and three days to drive back, staying in St. Louis on the way back at a wonderful olde English inn, the Cheshire Lodge (http://www.cheshirelodge.net/). I look forward to my next visit there - it was a great place to stay! The last day of the trip, we visited the Butterfly House in Chesterfield, MO (http://www.butterflyhouse.org/). I hope this wasn't once in a lifetime, but if it was, we sure made the best of it! Thanks to my mom for making this happen - without her encouragement, I don't think I would have tried it. Here are to more travels for us all.

Adenoid Cystic Carcinoma in the news

A beautiful tribute to Benita Garland: A Life Dedicated to Helping Women of Color

http://timesunion.com/AspStories/story.asp?storyID=686582&category=ALBANY&BCCode=LOCAL&newsdate=5/7/2008

Update from the Live Like Andi Foundation

[I am honored that Mike O'Connell of the Live Like Andi Foundation has read my blog. Mr. O'Connell left two comments on previous posts, but I wanted to elevate his comments to post level so you wouldn't miss them. -cheeky]

1. Thanks for all of the great blog support. The Live Like Andi Foundation Run/Walk for ACC Research was a huge success! We had 900 participants and raised over $75,000 for ACC reaseach. We donated $25,000 of our proceeds to Marnie Kaufman at the ACC Research Foundation. Marnie attended the event on 4/12 and appeared on the Local NBC News with me. For more [information] Visit http://www.livelikeandi.com or http://www.sadlershots.com to view photos.

2. Great News. Keep up the positive attitude. ACC patients must realize that they are in this for the long fight. ACC most likely is not gone but undetectable. Get your scans and MRI's moved up to every 3-4 months. Early detection and non-invasive radiation on a minimal basis (zap the little tumors early) are the KEY! Thanks for all of the great support/blogs regarding my wife Andi O'Connell's - Live Like Andi Foundation for ACC. Mike O'Connell

Roadtrip to celebrate: No Evidence of Disease

I visited with my radiation oncologist (who now only sees me every 6 months), and he said that I appear to be clear of ACC and any other critters at this time. (He also said that no one has a clue yet as to what was in my skull back in November. Go figure.) My next MRI is towards the last of May, when my head/neck surgeon should give me a report on that scan's findings. In the meantime, to celebrate this declaration of NED, I am heading to the beach with my mom for a few days. (Why save an experience like that for when cancer comes back, anyway??) We will be in the Scion, facing the open road and looking forward to curling our frozen northern toes into some warm sand. I will have sufficient head protection, but hope I don't have to wear the full mask as I would have last summer. We shall see. I may use the chance to do a mobile post to this blog, so stay tuned!

Report on the recent historic North East ACC Get Together

[This report is from Dan Dube', a fellow ACC survivor. His account of the Get Together and what research may result from it is so important, in my opinion, that I requested and received his permission to post it on this blog. I regret not being able to attend, but plan to attend the next Get Together, whenever it is scheduled. -th]

ACC Survivors,

Here is my personal report about the North East ACC Get Together I attended that was held last Saturday, March 29^th from noon to 4PM at the home of Jeff and Marnie Kaufman in Needham, MA, just south west of Boston. We are all so thankful to them for opening up their home to us and hosting this great time together. This message is being sent out to three groups of people: everyone who attended our gathering, everyone who had expressed an interest in coming but was not able to do so, and the NW ACC group who I am very closely linked with and many who wanted to hear about this gathering.

I believe that this was historically the largest gathering of ACC survivors ever. We had 13 ACC survivors from 8 states in attendance, with a total of 24 people including the family members. There were quite a few others who initially expressed an interest, and some who were planning on attending, but at the last minute had conflicts that prevented them from coming. Such is the reality of all of our lives and the many priorities we must balance. Jennifer Dodge, Marnie Kaufman and myself all worked together to organize the event, which truly was an example of the power of collaboration. My three day trip to Boston also involved a tour of a lean manufacturing plant in Hartford, CT, spending some quality time with Jeff and Marnie, a trip to the MIT museum to see some excellent cancer related exhibits, and managing to navigate the crazy Boston streets and freeways to visit a few other places!

I have attached two pictures of the group for you that were taken on the front steps of Marnie’s home when we finally got organized and flowing together! Aubrey did an excellent job and the quality is so good! One of them shows just the 13 survivors, and the other one shows everyone who attended. Here is the list of the attendees in the picture of the complete group, with the name of each ACC survivor identified with a * after their first name.

(Bottom 2 stairs seated)

Kara* Gelb, Linda* DiLenge, Sharon* Klein, Patricia* Tessari, Dan* Dube', Jim Repka,

(Center 2 stairs seated)

Brett* Casteel, Marnie* Kaufman, Shari* Repka, Jackie* Rossier, Jennifer* Dodge, Mike Hall (husband of Susan Smith-Riedel)

(Top stair seated)

Lara Casteel, Susan* Smith-Riedel, Sandy* Baer, Tom DiLenge

(Standing in back and crouching!)

Stuart* Taylor, Stuart Klein, Barry Kahn (husband of Sandy Baer), Joanne Seblatnigg (sister of Sandy Baer), Jeff Kaufman, Eben Tessari, Chuck Rossier

(Not in picture, but the person who did the photography and provided much support: Aubrey Conquergood, Marnie's sister)

We had a scheduled agenda, it was discussed as a group, it was sent out in advance, it was posted on a white board, and we sort of followed it… but getting things moving was like herding cats for me!! For those who know me real well, I like to keep things all tidy and organized, but I have really worked at learning how to go with the flow. I really appreciated how everyone stayed really flexible and we really did have a chance for everything important. Overall, the whole day was filled with lots of laughter, chatting, connecting, building new relationships and enjoying everyone. There was so much energy, introductions and discussions from the very beginning, and the support for one another was incredible.

Here’s what we did:

Noon to 1:15 LUNCH

Marnie provided us with an excellent Italian lunch with multiple dishes, salad from Jennifer Dodge, a great assortment of drinks, and a very nice flow. The floor plan was excellent for this sort of event with plenty of room to serve food, multiple places to sit, nice sunshine outside, and a very warm, yet cheery atmosphere.

1:20 to 1:30 PICTURES

We took the pictures on the front porch with most people cooperating! (Again… herding cats!)

1:30 to 2:45 GROUP DISCUSSION

We sat in a big circle and did the classic “ACC Group Sharing” time. For each and every one of the ACC get-togethers that I have attended, this has always been the most meaningful, emotional and supportive part of the day. We simply went around the room and every person had a chance to share their story of ACC and their life with the rest of the group. We set some guidelines for how long to take (3 minutes each), the types of subjects to be careful with discussing (avoid sex, politics and religion… which some of us sort of followed… but not absolutely everyone!!) and most of all, for people to share what ever they were comfortable sharing with the group. No expectations… just freedom and acceptance. This time of sharing and discussion was filled with a lot of laughter, tears from many of us, (even some of us guys… yes it’s true… guys do cry), passing around the Kleenex box, feeling the safe atmosphere, very compassionate understanding, sharing of difficult challenges, more continuous laughter, hearing some answers, and much hope.

2:45 to 3:00 ACC Research Foundation UPDATE

Jeff Kaufman shared some updates with the group about the progress of the ACC Research Foundation that he and Marnie started up two years and the tremendous hope that is emerging. He provided everyone with a multi-page handout of the research agenda showing the details on the amazing progress made so far, the next steps that are being taken, and all of it very clearly documented. He also let everyone know that he is working with a group of people to provide more patient focused information on the ACCRF website for those who find the website and are looking for some answers regarding their ACC.

3:00 CLOSE THE GROUP DISCUSSION

I provided all the survivors with a hand out of some sample documents for the types of information I am working on putting together to add to the ACCRF website that address coping, surviving and dealing with the many life issues surrounding cancer. I made the decision to not spend any more time with group discussion (we had sat on our butts long enough!!) but let everyone know I would follow up with an email that would explain the handouts and asking for feedback. We also had a birthday cake presentation for Kara Geld since it was her birthday, and for Linda DeLenge who was celebrating two years post-treatment and being cancer free. A very rich, unique version of “Happy Birthday” was sung for both of our survivor friends…

3:00 to 4:30 INFORMAL CHATTING

This was informal time for having dessert, one-on-one chatting and small group discussions. This was the chance for people to discuss their treatment choices, compare experiences, ask questions, share stories and touch base with others now that we knew a little bit more about each other.

I want to close this report with telling you about two very meaningful gifts that I got the chance to present. I brought a “15-in-1” screwdriver from Tacoma Screw Products where I work that I gave to Jeff Kaufman as a gift. This particular tool is a big seller for our company because it is a high quality screwdriver that has a great variety of screwdriver bits contained in the handle. The analogy I gave to Jeff was that finding a cure for a rare cancer requires looking at a whole bunch of tools (types of screw driver bits) to find the single one that works. That is the challenge that Jeff has spearheaded, and I wanted him to have this really cool screwdriver that he could use around the house, but also to see it as a reminder that many of us are eternally grateful for the miracle of real hope he has brought into all our lives through the ACCRF.

And then I had the chance to present to Marnie a small, decorative, counter top plaque that said “There’s no place like hope.” It was amazing how the cheery yellow and blue colors were exactly matching to the décor in Marnie’s rec room. Amazing synchronistic coincidence! The story behind that plaque goes back to several other connections in my life. That plaque was given to me several years ago as a gift from Nancy Martin who was an ACC survivor I had met when she had come from Atlanta to Seattle for neutron radiation. It was something that I have kept right next to my computer all these years. I saw this as an opportunity to “pay it forward” and continue to spread the encouragement and thanks to Marnie who has been so meaningful in my life.

The other connection with this plaque was that at our very first NW get together in Seattle back in 2001, Marnie Tamaki, the mother of Danara Stewart who had ACC, had brought a ceramic plate for each of us that had that same message, “There’s no place like hope.” I had taken that ceramic plate with me to the first ACC get together in San Diego a year later, and had presented it to Prudence Jackson as a way of thanking her for her stupendous efforts in starting the ACCOI support group. So both of these Marnies in my life have a strong connection with ACC, and in a very similar way have been a link to the message of hope.

On the back of that plaque was a quote I read to our group that really says what I experienced during my few days in Boston. As I read it to the group and then presented it to Marnie, my emotions of my 10 years of dealing with ACC came to the surface, and I began to cry, and Marnie and I shared some tears and a hug with some very deep mutual feelings of gratitude. I think we can all gain something from keeping this quote in front of us as we move forward in the days ahead to work together to find a cure for this disease, and support each other in our individual challenges…

“The journey has always been about laughing together, loving each other, seeking adventure, believing in our dreams and making a difference… but sometimes we forget.”

We can all get wrapped up in daily life and forget about the really important things addressed in that little quote, but I hope that through events like this gathering we can all be reminded of that little bit of wisdom and apply it in our relationships with each other in the days ahead.

Your friend and fellow survivor,

Dan Dube'

Puyallup Washington (south of Seattle)