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.