Tuesday, March 25, 2008

Adenoid Cystic Carcinoma in the news

Catholic Central High in Novi [MI?] to host 10k/5k run, 5k walk and fun run April 12, 2008 Goal: Raise Money for Rare Cancer http://www.expertclick.com/NewsReleaseWire/default.cfm?Action=ReleaseDetail&ID=20786
This Live Like Andi Run, Walk & Fun Run fundraiser is in memory of Andi O'Connell, and includes a high-heel race. Her children will be selling cheetah colored wristbands that say "Live Like Andi", since in Andi's opinion, "cheetah print IS a color". The funds will be going to the Adenoid Cystic Carcinoma Research Foundation.
(Added 3/27/08) Another news story about Andi: http://hometownlife.com/apps/pbcs.dll/article?AID=/20080327/NEWS19/803270634/1036

They have a website for her foundation: The Live Like Andi Foundation http://www.livelikeandi.org/. The logo - yep, it includes a cheetah ribbon. Man, I hope I continue to live like Andi - I bet she would have approved of the Golden Scion and my Gypsy bike that now reside in my garage!

This is a follow-up to an earlier story that I had posted last August: http://cheekylibrarian.blogspot.com/2007/08/news-that-we-have-lost-fellow-adenoid.html

Sunday, March 16, 2008

A visit to the pain clinic

I have had an initial appointment at the pain clinic, and have come away without any pain medications at all. That wasn't my goal, you understand - this appointment was due to the increased pain I had been feeling since January. The good news - the thyroid medication that my oncologist had increased is doing its work, improving my mental state and energy levels. And there is no bad news.

While I was in the pain clinic, I had to fill out forms that would be used to determine what level of pain I was experiencing. Other than not knowing what pain to describe on what line (I guess they don't figure folks could be having more than one pain, such as the one I have on my craniectomy site and the one that I feel where the radiation concentrated on the left side of my face/neck), I came away feeling very fortunate that my pain is not so high as to be unbearable. On the quality of life scale, I am a 10 - I can work full time, I get out for errands and for social occasions, and I don't let pain stop me from doing things. The doctors gave me permission to stop the low dose of gabapentin (the side effects were deal breakers to me at this time), they reminded me that they would be there if my pain increased later, and they said they keep my quality of life in mind with their treatments. I figure I will save their big guns for a later date, if pain increases or if I have to go through more treatment in the future. For now, I can distract myself from most of the pain that goes on and in my head.

The next doctor appointment is April 1 (appropriate, ain't it?), when I see the radiation oncologist. I have not seen him in person since he discovered the pearl in my head - I am looking forward to seeing him and thanking him for that nice bit of detective work.

If you have questions about pain after you have talked with your health care professional, a good place to start for answers on the web is at MedlinePlus:
http://www.nlm.nih.gov/medlineplus/pain.html Check out the Go Local link on the right side of the page to see if there are health professionals near your location that deal in pain management.

Adenoid Cystic Carcinoma in the news

These stories showed up in my regular search of Google News:

Love and Death - from the March 16th edition of The Roanoke Times:
http://www.roanoke.com/news/nrv/wb/154766

Two Women Fight One Battle - from the March 13th edition of The Daily Record (Dunn, NC):
http://www.dunndailyrecord.com/main.asp?SectionID=1&SubSectionID=1&ArticleID=94994

Trick Golfer Entertains 152 at 'Spirit of the Y' Dinner - from the March 6th edition of the Republican & Herald (Pottsville, PA)
http://www.republicanherald.com/site/news.cfm?newsid=19364497&BRD=2626&PAG=461&dept_id=532624&rfi=6
(I have posted about Ben Wittner before: http://cheekylibrarian.blogspot.com/2007/07/another-person-in-news-with-acc.html )

Moving Tale an Early Entry in Short Story Competition -from the February 21st edition of Luton Today (Great Britain)
http://www.lutontoday.co.uk/545/Moving-tale-an-early-entry.3801901.jp
(this is a followup to a story I posted earlier: For the love of Andrea -
http://cheekylibrarian.blogspot.com/2007/10/news-item-about-fellow-adenoid-cystic.html )

and while not necessarily news, the Cheeky Librarian did get into a newsletter recently, the UNMC Connect, Winter 2008 issue: http://www.unmc.edu/connect/ , and scroll down the page until you see the black & white photo of the Cheeky Librarian, where you can click on the pdf of the story.

Wednesday, March 12, 2008

The greatest cartoon EVER!


Two reasons why this cartoon is great: one, because the artist, Dave Coverly, emailed it to me and gave me permission to post it to this blog (and I think that is one of only two times I have been in direct contact with a cartoon artist - heady stuff!); two, because the topic fits me perfectly - I am lousy at pearls (link to previous message about the pearl in my head), and pretty good at origami. I saw it in the March 8th edition of Parade Magazine, and just had to share it with you all! (Click on the image to open a larger version.)
You can check out more of Mr. Coverly's art at Creators.com, where they archive his Speed Bump cartoon series: http://www.creators.com/comics/speed-bump/16095.html.
He also has a website that had another great cartoon - a librarian cartoon that he will sell as a poster: http://www.speedbump.com/librarian.html .
Thanks again for giving me permission to do this, Dave - you are the best!

Sunday, March 02, 2008

Feeling fine

My cheeks are hurting, but not due to cancer or treatment this time. Thanks to the spring weather on Saturday, I ran around town in the Scion, sun roof and windows open, radio cranked up, grinning like I haven't grinned in quite a while. The rest of the world just faded away. If driving 20-odd miles in Omaha traffic makes me feel this good, I can't wait for a real road trip.

If you are beginning, in the middle, or just finishing your treatment, please know that there are good days ahead. I know it is hard to believe while you are going through stuff (and boy, the stuff sometimes just keeps going, and arrives in buckets), but better days will happen. They may only happen one day at a time, and spread out between a lot of crappy days, and heck, may only be a partial day, but I hope you are able to grab whatever good comes your way. Keep on rebuilding yourself, so you are ready to catch the good ones when they drop by. In the effort of keeping myself ready to catch the good ones, I still exercise my jaw, cream my radiation-dried skin, knock down the lymphedema, try to get adequate nourishment with a changed diet (I think I am now the world's most cranky and frustrated vegetarian-PETA would be proud), and find ways to rest up in between the gallivanting around. I also know that all the work I do may not stop anything new from coming - I am just trying to reduce the effects of what has already been done. I don't know how much longer this marathon called life is for me, but I want to be aware of the entire event if possible. (Since I reread my blog, I am telling this message to myself, too, especially my future self that may be going through another round of crud.)
 
Who links to my website?