Thursday, January 31, 2008

Lucky the dog to the rescue with humor

We are into the day-to-day living through this cold winter, so I figured it was time to add some humor of any sort. Here is the "I Can Has Cheezburger" site entry I posted for Lucky this week:

http://www.thecheezburgerfactory.com/View.aspx?ihasurcoucha128462266990312500.jpg


Vote for this picture if you like it! See other fun pet pictures at the home page of the site:
http://icanhascheezburger.com/

Thursday, January 24, 2008

Did I have trepanation, 2007-style?

Ok, did I have what they used to call 'trepanation' when I had the craniectomy in November? Does it still 'count' if they cover the hole up with titanium mesh? Trepanation is the ancient practice of drilling a hole in the skull. Today's researchers think it was done to relieve pressure or for curing mental illness. More on this in a BoingBoing article, along with a tale of a more recent trepanner http://www.boingboing.net/trepan.html . The guy in the story drilled into his own head himself in 1973, seeking a permanent high, "similar to the sensation of lengthy yoga headstands". Guess I completely missed out on that experience - no permanent high here, although at times it does strike me as an extravagant way to cure the awful headaches I was having beforehand.

From today's NPR: Choosing a doctor in the digital age

More information on how folks use doctor ratings to choose a doctor, from this morning's NPR Morning Edition: http://www.npr.org/templates/story/story.php?storyId=18349445 .

Wednesday, January 23, 2008

My champions throughout this cancer treatment

I am thankful every day for the champions that are in my life. Some folks describe the angels that they have met since cancer entered their days - for me, it is the champions (who just might be angels, I will admit that). First, my immediate family - husband, son, and daughter. They not only put up with a mom/wife that was freaking out about a cancer diagnosis and treatment options, they continually treated me with love (and occasionally, with a lot of space). My son didn't quit school, despite the upheaval of a mom with cancer - he finished, and is in college. My daughter did not learn to be afraid of life despite seeing what one can get handed at times, and is now a representative of our culture living in Austria. My husband did not find my new appearance distasteful, and has fully lived up to the vow of "in sickness and in health". He still talks of our future together, which is a golden treasure to me. My parents, suffering along with me as their child going through pain and the unknown - continue to love me, encourage me, and celebrate my growth in these new and different areas. My extended family have made contact with me electronically and regular mail, keeping in touch and letting me know they are thinking of me. Folks, that is so valuable - the smallest card means so much.

Next would be my work family. Even when presented with prime opportunities to talk with others about what I have been going through, they respect my silence, keeping the cancer in the background (as much as any of us can). I am as accepted as I was before, with a complete lack of pity or revulsion at being the one to bring cancer to our small group. After all, these are the wonderful people that gave me my iPod, that thing that has kept me saner than I would have been without it through music, audio books, and good movies. The extended family at work also seems to allow the cancer and crap that goes with it to recede in the background, keeping true work topics at the forefront. A pretty good trick of these professionals, since a lot of those I work with are my care givers, and have seen me 'outside of my work clothes', so to speak.

And my friends - there's a legion of champions. With dirty jokes, clean jokes, something funny in the email, an ear to listen to the latest gripe, or trips out to change the mood and/or scenery, my friends are also my champions. To the ones that bought the hairpiece after the latest surgery - I can just about wear it now, and will put a picture in here on your behalf. To the ones that have bought me dinner out - I am looking forward to more with you, and soon! To the ones that took me to see plays so I could act like a true grownup and not an invalid - a standing ovation to you, and the hope that we can go out together again. To the ones I have only met online - here's to us meeting in person soon, so I can give you a proper champion-worthy hug.

Another set of champions I may never meet - the ones with adenoid cystic carcinoma that has crept back into their lives and won't leave. They keep on keeping on, despite the failed attempts to stop the cancer. They are the ones I watch, and hope to live as successfully as they do when my time comes.

I have heard stories at support groups that describe cancer patients with lives that have few champions - spouses or significant others that leave at the cancer diagnosis; bosses that refuse to give any 'extra' consideration once one has cancer; family members that shun the cancer patient, thinking it is catching or that they don't have time to care... really bad stories, the worse because they are true. Thank all that is good that I have not experienced this at all. And now that I am all better again, I hope I can pass the goodness I received from my champions on to someone else that needs one in their life.

Monday, January 21, 2008

Adenoid Cystic Carcinoma in the news

Having adenoid cystic carcinoma can bring out the best in your neighbors, as this story from Australia illustrates:
Backyard Blitz
http://www.thedaily.com.au/news/2008/jan/17/backyard-blitz/

Tuesday, January 15, 2008

More on what to do with leftover drugs

My friend Jeanne at the Assertive Cancer Patient blog, has located Cancer Drug Repositories in various states that would accept donations of cancer treatment drugs: Don't Dump Those Drugs! http://www.assertivepatient.com/2008/01/dont-dump-those.html.
Nebraska is one of the states with an official Cancer Drug Repository Program in place, and a list of those registered linked at this site: http://www.hhs.state.ne.us/cancerdrugs/. I checked out the state statutes, and found out that they would not have accepted my unused prescription of Oxycontin (hey, I sure didn't get any good out of it - ibuprofen turned out better for my head pain than the narcotic), as the drug is a controlled substance - see number 7 in the list below of what cannot be donated into the program.



6-003.06 Non-Acceptable Cancer Drugs: The following categories of drugs are not
acceptable for dispensing or distribution under the program:

1. A cancer drug that bears an expiration date prior to the date of
donation because the effectiveness of the cancer drug cannot be
ensured;
2. A cancer drug that is adulterated or misbranded pursuant to Neb. Rev.
Stat. § 71-2401 or § 71-2402 because the effectiveness and safety of
the cancer drug cannot be ensured;
3. A cancer drug that has expired while in the repository program;
4. A cancer drug in packaging that has been opened, unsealed, or
tampered with or that is no longer in its original container because the
safety of the cancer drug can no longer be ensured;
5. A cancer drug packaged in single unit doses if the outside packaging
is opened and the single-unit-dose packaging is also opened because
the safety of the cancer drug can no longer be ensured;
6. A cancer drug that requires refrigeration, freezing, or other special
temperature requirements beyond controlled room temperature
because the effectiveness and safety of the cancer drug cannot be
ensured; or
7. Controlled substances because Federal Law prohibits their return.


Cheeky Librarian here again - the Cancer Drug Repository is a wonderful thing to donate to if you have unopened, non-perishable, unexpired cancer treatment drugs left over for any reason. I plan on keeping the Program's link handy for possible future leftover drugs that are not controlled substances. As for future controlled substances, I will have to continue to chuck them out with the coffee grounds for now.

Friday, January 11, 2008

Roger Ebert's review of The Bucket List is spot on

Roger Ebert, a fellow head/neck cancer survivor, tells it like it is in his review of "The Bucket List": http://rogerebert.suntimes.com/apps/pbcs.dll/article?AID=/20080110/REVIEWS/801100301 . I knew the main characters were supposed to be dying, but hadn't connected that this was supposed to be a cancer movie. (Maybe more was taking out with my skull-bit than I thought!)

A quote from his review: "I've never had chemo, as Edward and Carter must endure, but I have had cancer, and believe me, during convalescence after surgery the last item on your bucket list is climbing a Himalaya. Your list is more likely to be topped by keeping down a full meal, having a triumphant bowel movement, keeping your energy up in the afternoon, letting your loved ones know you love them, and convincing the doc your reports of pain are real and not merely disguising your desire to become a drug addict."

Thanks to Mr. Ebert, I will put that movie ticket money aside for a better show in the future!

1/12/08 -You can read more about Mr. Ebert's review on this movie, and link to other cancer movie reviews at The Assertive Cancer Patient's blog:
http://www.assertivepatient.com/2008/01/the-bucket-list.html.

Wednesday, January 09, 2008

Some cities can now rate their doctors via WellPoint

I posted in late December about doctor rating sites . The Indianapolis Star reports that "First Cities Get WellPoint Doctor Ratings" at this site: http://www.indystar.com/apps/pbcs.dll/article?AID=/20080109/BUSINESS/801090433/1003/BUSINESS
The areas include Connecticut, Los Angeles, Cincinnati and Dayton. WellPoint partnered with Zagat - yep, the folks that do the restaurant guidebooks. Categories that are rated include: trust, environment, communication, and availability.

Friday, January 04, 2008

Blogging your dreams - a contest

What a wonderful contest! Blogging your dreams, a contest run by the advertising team of Washington Post Newsweek Interactive: http://www.bloggingyourdreams.com/registration.html
Their intent is to "connect people with unfulfilled dreams and help them realize those dreams."
I won't go into what I dream about here just yet - I don't want to jinx anything - but if I win, I will be blogging all about it to you, my readers! If it means anything, I did see a falling star earlier this evening, and made the same wish on it (grin!). And as I type this, "Always Look On The Bright Side of Life" is playing on my iTunes (the Spamalot CD is such a wonderful Christmas gift!)
Go ahead and enter your dream - dreaming is what makes life grand!

Adenoid Cystic Carcinoma in the news

From the Trinidad Express: A test of faith -Cancer survivor wins award http://www.trinidadexpress.com/index.pl/article_news?id=161257463
Gregory Solis was named the Individual of the Year for 2007, due to his strength when faced with many ordeals, one of which was adenoid cystic carcinoma.

A memorial to a strong woman

Helena and her husband Ken wrote about their decades-long fight against adenoid cystic carcinoma, and Ken created a website filled with their stories: http://www.helenas-memorial.com/ . Start with "Read the Saga", which takes you to a page of links to the individual chapters.
Helena passed away in the summer of 2005, but her story is still there for all to read.

Thursday, January 03, 2008

Radioactive implants or bone scan? Get a note from your doctor!

From Reuters Health e-line: "Hot" Patients Need Note To Get Through Security http://www.reutershealth.com/archive/2007/12/24/eline/links/20071224elin021.html

Did you get a radiation implant(s) to treat your cancer? Have you had a bone, thyroid, heart, or PET scan lately? On the day of your procedure or when you are released, your doctor should be giving you a note for law enforcement officials that says you recently underwent radioactive treatment, and that would explain why you are setting off the radiation alarms. Otherwise, Lucy, you will have some 'splaining to do.

To answer Jeanne's comment about definition of 'recently', a quote from the story:
"A person who has a bone, thyroid or heart scan with radioactive material, or cancer treatment with radioactive implants, can trigger a radiation alarm for days or even months after the procedure, depending on the type of radiopharmaceutical used, Ansari and colleague Dr. Luba Katz of Abt Associates in Cambridge, Massachusetts, explain in the Journal of Nuclear Medicine." (bolded text mine)

This evidently does not apply to IMRT or other radiation therapy where the beams pass out of the body. I still set off the book alarm for a few weeks at the end of my 66cGy worth of radiation, but figure it was due to my crowns being 'hot'. By the time I flew to Boston in October of '06 (radiation ended Sept 20, '06), I went through the screening area just fine.

Thanks to Siobhan for the heads up on this story.

Wednesday, January 02, 2008

And a happy new year it is!

2008 - no matter what it holds in store for me, I am glad it is here. Maybe it is because I am a fan of even numbers? Maybe it is because I am still experiencing the side effects of a titanium implant? (Well, I would hope that those side effects would be mild euphoria and a grateful disposition!)

For any reason, I am pretty glad to be still around to kick up some sort of action before this year is out. Will Oprah and I meet in person? Will Warren Buffett send me a hello? Will I receive a message from the Librarian of Congress? Will I get awareness about adenoid cystic carcinoma mentioned in prime time news? Only time will tell. One thing that has started the year off right - my other blog, where I put library professional links, has been rated in the top 100 library blogs. The current rating is 33 out of 100, I think. It changes just about daily: http://libeducation.blogspot.com .

Another new development with this new year - I am able to say something I have never said electronically before : HI MOM! (My mom is now on the Internet, and could just be a reader of this Cheeky blog.) She joins a large number of family and friends that read this blog, along with anyone who is searching for more information on adenoid cystic carcinoma.

The one thing I hope to continue - collecting the best information resources about this rare cancer and coping with any cancers for others to easily locate during their search for answers.
 
Who links to my website?