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Saturday, April 30, 2011

If you are wondering what I have been up to...

This weekend is the Berkshire Hathaway Annual Meeting in Omaha, and I have been playing a bit with the high rollers. One of the members of my family ended up in a photo taken for the meeting blog:
Yeah, I will let you figure out who and where they might be (kind of hard to find 'where's Waldo' when you don't know what Waldo looks like, huh?) Just letting you know I am less than 6 degrees from Mr. Buffet this weekend, and life is very good.

Adenoid Cystic Carcinoma in the news

Tim Pearson of Glen Innes, New Zealand has died.
His battle (yes, I will call it a battle) with ACC lasted for 10 years, charted through newspaper stories since 2005. I link to two of them (from 2008 and one from just a year ago) in this blog: I join others in sending condolences to his daughter Theresa, and if it brings her comfort, I want her to know that her father is recognized as a great man by this fellow ACC-wearer living on the other side of our shared Earth.

Here is an editorial about a South Carolina school class that took it upon themselves to solicit donations to defray costs for Kellyson Swinney Poe's neutron radiation treatment in Seattle: 
Congratulations on the class' efforts, which I know went a long way to ease the minds of Ms. Poe and her family, letting them concentrate on her care and healing rather than how costs would be covered. Congratulations for those that came forward with a pizza party to reward their efforts - such actions should be reinforced. And congratulations to the individuals in the class, who chose to think of someone else at a time in their lives when that is generally unusual. Students are still accepting donations, according to their school website:

Wednesday, April 27, 2011

Adenoid Cystic Carcinoma in the news

I just saw this article about Katie Easterbrook of Virginia that describes her diagnosis and treatment for ACC and the need for people to get screening for oral, head, and neck cancers:

Oral Cancer Survivor Shares Her Story

Her story is also told in this Georgetown University Hospital news item:

I wish Ms. Easterbrook all the best, and thank her for sharing her story for such a great cause.

Monday, April 25, 2011

Adenoid Cystic Carcinoma in the news

Just located this news item from last October - and if my swiss cheese brain already posted it here, well fine. A strong lady like Donna Woolum is worth the extra coverage, in my opinion.
From Pal-item:

Sister supportive of Centerville woman who's battled cancer since 1996

Ms. Woolum is a lady who has set a model for approaching ACC that I hope to follow. She was diagnosed with ACC back in 1996, and has had more than a dozen surgeries to get ahead of the relentless spread of the disease. In 2005, she was diagnosed and treated for breast cancer, in addition to the ACC. In the article, her older sister gives advice on the best way for caregivers to support cancer patients: "Just be there for them. Just be there if they need anything."

I am glad I have learned about Ms. Woolum's story, and so very glad that she and her sister have each other, and that they were brave enough to share their path with others.

Saturday, April 23, 2011

Thinking about freedom to do what I want

I currently have no restrictions on me - I can eat what I can stand (yeah, that whole 'lost taste' thing I don't see as a restriction), go where I want, drive when I want to drive. I know I have had restrictions on me in the past (just healing up from an operation can leave one feeling restricted), and will have them again in the future. Of course, my cars have always represented freedom to me, especially my first one and my current one. I submitted a story about my first car and won a contest calling for stories about 'beater cars' by the best repair shop in Omaha - Charlie Graham - with this story (added some edits), and I thought the trip down my memory lane might be of interest to others here. Let me know if you have stories to share in the comments!

Freedom is the best way to describe beater cars. I had an ice scraper for the inside of my robin's egg blue '66 Dodge Dart windshield, until I figured out I just had to pull out the glove box and physically flip the switch that allowed the radiator and heater core to talk to one another. I threw newspapers daily in all weather to 110 customers for a year to save up the money. I bought it in 1978 from a family of 5 sons. All of them learned to drive on it, and the last one that had the title in his name was on a nuclear sub. I had to wait for him to sign over the title via top secret mail service. I called it the Blue Angel, since I had a thing for flying. Thanks to my public library, and the help of Chilton Guides, I learned to maintain it as well as change a water pump (and figure out that heater problem!) I sold it to a friend when I moved on to my next car, and learned they turned it into a demolition derby car. A fitting end to a car with heart.

Thursday, April 21, 2011

Adenoid Cystic Carcinoma in the news

This news item comes from San Antonio, Texas, and is pretty amazing.
Genetic tissue testing leads to 'personalized' cancer treatment - from KENS, Channel 5 in San Antonio. Tara Hernandez of Kerrville, TX has had 14 years wearing ACC, and thanks to genetic profiling conducted by START (South Texas Accelerated Research Therapeutics), Ms. Hernandez has undergone 'experimental pill therapy', resulting in '60% to 70% regression of her tumor.'

I can't wait to learn more about her treatment - wonder if the ACCRF would have more information about which drug she received that shrunk her tumor??!? Ok, calm down - this is one patient, and one drug. One patient with one drug does not a cure make for everyone. But if the health care profession is truly going to personalized medicine, I want to get in line NOW and have my genome sequenced (or whatever the process is to identify my breed of ACC).  It would be wonderful to avoid waiting for that other shoe to drop in the decades ahead, really.

Saturday, April 16, 2011

Cleaning house

I decided how I would best like to mark the 5th year since diagnosis - I am chucking all books and informative items received from organizations during that first year*. At times after I was first diagnosed, it was as if I had been in a car accident and the lawyers were chasing me to catch my case. Livestrong. SPOHNC. American Cancer Society. They all had 'found' me (through my great friends as well as hospital connections, I imagine), and filled up my mailbox with notebooks, recipe books, 'how to cope' pamphlets, etc. They did so very much for my outlook when the days were very dark. I could go to the information resources (remember, I wasn't using the web to search my stuff at that time) and find tidbits that helped. Well, I am on the other side of that initial period, and don't need to keep those things around. I may be short-sighted, but if/when the cancer comes back to the point I need to deal with it, it won't be like the first time. Oh, there will be the great unknown - heck, we have that EVERY day. But I have identified my information pathways and the 'go to' folks that will be much better than pamphlets and notebooks. Maybe it is like the difference between having the first and second baby?

I again thank my great friends, wonderful family, and amazing extended librarian network for the cards, emails, flowers, jokes, and even a huge box of Archie McPhee treasures during my treatment weeks. Mail comes to my house in the late afternoon, and after I would nap a bit (resting helps the body heal, and healing during radiation is a must), I would go out to the mailbox and find something nearly every day. What a mood lifter! If you have a friend or family member that is going through any rough patch, grab that funny card you see the next time you go to the grocery store and mail it. It has power.

*And if you think it is wasteful for me to chuck the items rather than share with someone newly diagnosed - the items all have copyright dates of 2005 and older, not the most recent dates in the scheme of cancer care and information, and this librarian cannot pass potentially outdated information on with good conscience. I trust that anyone newly diagnosed will gather their fresh crop of informative items.

Saturday, April 09, 2011

Research funding for adenoid cystic carcinoma announced by NORD

I saw in March 2011 report from NORD that they have released RFP for funding that includes research on diagnosis, causes, and/or treatment of Adenoid Cystic Carcinoma:

Deadline for applying is May 20, 2011. The award is $30,000 seed money. GO FOR IT!!

Lessons about adenoid cystic carcinoma from poker?

I am somewhat of a night owl now - waking up at various times in the night, and either making jewelry or watching late night tv (or both). I was flipping through channels one time, and one of the live poker championship shows was on. I heard the announcer say, as he was introducing the players: "no matter if you follow the rules, you can still lose this game." While I don't agree with 'fighting' cancer as a win/lose proposition, that statement could apply to those of us that are ACC-wearers. We can follow the rules set out in treatment protocols, or by the National Cancer Institute on their recommendations for healthy living, or by our primary care providers, yet still have the ACC come back. There is currently no way of us knowing our future path after that initial tumor-ectomy and/or ACC diagnosis. I may be doing more belly-button contemplation these days, since I am coming up to the artificial 5 year magic mark since the tumor was removed and diagnosed. Not sure. What I do know: I want to stress to anyone that thought they were rid of the ACC only to have it rear up again - don't blame yourself. As far as they (the researchers) know, we weren't to be blamed for having it the first time, and sure as heck aren't to be blamed for it coming back. I doubt I will be having a cake to mark my 5th year milestone (cake is nasty now anyway), but I will probably spend some additional quiet belly-button contemplation time, figuring out my part in this big-ol'-world and where I would like things to go if the game continues to play out in my favor. As for my fellow ACC-wearers - I wish for all of us days full of whatever makes us our best selves. Here's to many more years of game-playing for us all.

Wednesday, April 06, 2011

Radiation in the news

As a human that received 6600 Gray in 2006 to kill off any remaining cancer cells left over after they removed my left parotid, and as a human that was told in 1986 that the Chernobyl cloud had indeed passed over the area of Germany that I lived in (we kind of figured it, when we saw the farmers plowing under their crops and slaughtering their livestock), and as an adult that grew up on this planet before the nuclear test ban treaty, I figure I am well acquainted with extra doses of radiation in some form or another. Contamination on the scale that is faced in places that have had accidents or incidents is what came to my mind when the surgeon told me that I would need radiotherapy as an effort to keep the cancer from coming back in my face. I was always grateful for the physicists' skills in programming the IMRT machine to make sure the beams of radiation met their mark and missed as much of my good parts as possible. I am even more grateful after I saw a story today about the 1987 incident in Goiania, Brazil - The article discusses the danger of radiation amounts under 4 Gray, and I received 6600 Gray in a very localized area. Just boggles the (probably radiated) mind, that's all. And explains why long-term follow-up after radiotherapy is recommended. (Still waiting for that super hero power, though.)
If you have questions about radiation exposure and how it fits into your life, please contact your local library for more information. Here are some other sites of info that might be of interest:

Radiation Emergencies - MedlinePlus

Radiation doses in perspective - EPA

International Atomic Energy Agency

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

I am glad that you found this blog, but so sorry that we have to meet under these conditions. There are links on the right side of the blog for more information on ACC, (also known by the acronym AdCC). If you are new to the topic and still under treatment, searching on the internet may not be the best action you can take at this time, since you need to concentrate on getting healed up and staying strong. Increasing your health literacy is very important.  Please contact your local library (could be a public or medical library) that serves consumer health information, and have them do information searches for you so you will have a focused collection of information to take to your health care professionals the next time you discuss your treatment options and long term outcome expectations. You can locate such a library in your area by going to this link at MedlinePlus:

Since this is a rare condition, finding out others' unique experiences may not be the best method for you to plot your own treatment path - in other words, you shouldn't be looking up your own or your loved one's conditions on the internet at this time. Really. I used our Consumer Health Information Resource Service (CHIRS), and the librarians gave me the health information I needed at the time I needed it, and saved me from dwelling on individuals' stories, enabling me to concentrate on my own path without distraction. Of course, once I was out of active treatment, you can bet that I traveled the web and added my voice to encourage others on this path, and still do so.

If you happen to be facing head/neck radiation, some of my coping strategies are recorded at the beginning of this blog - click back to the Fall of 2006 and you will find the posts.
If you are a cancer survivor (I still haven't found a better term for those of us on the other side of initial treatment), I salute you, and look forward to learning from you.

No matter who you are or how you found this blog, I hope some of the information I have recorded here is useful to you in some fashion.

Saturday, April 02, 2011

In case you are looking for the ACC Artists For A Cure Gallery - here's how to locate it

I just learned of this fundraiser, evidently run through Edith Thompson's (an artist from Virginia) site: . The site is pretty difficult to navigate (in Chrome on a Mac, anyway) - titles just slip right by your mouse, so I wish you luck in gaining access. I had first seen mention that there was a gallery somewhere in the world through a mention on the ACCOI Facebook site, but it didn't have a link to the gallery (perfect challenge to make a librarian go digging). I found a faulty cached version of a press release that mentioned the url of this page out on Google, and managed to tease out the originating site. (Hiding the site that holds the goodies is not the best way to raise money, in this librarian's opinion - please, please link all stories/blog/Facebook posts back to the site you want humans to visit and buy!). In the About Me section, the artist says she specializes in portraits, wildlife, nature and landscape in pen/ink and watercolor. (It doesn't say what her connection is to our rare cancer, though - that is a part of the story that I would like to know, as well as how much a 'portion' is that is donated to ACCRF.) Once you get the titles to stop sliding by your mouse, view the artist's gallery - she is very talented! There are 3 other artists listed on the site as "ACC Artists for a cure members", all from Japan. The links aren't live, but here is one if you want to click on it to check it out: Miki Ito (site is in Japanese). It is great that artists are sharing their work to raise money for ACCRF , and I look forward to learning more about the efforts as soon as the site is working and taking people to where they can see and purchase easily.

A fellow ACC wearer-fighter sent me this bit of news that a singer, Johnny J. Blair,  has given permission to include his song, One Wonderful Smile, in the Gallery. Mr. Blair will be joining the Monkees' tour this summer as bassist (ACC connection here - Peter Tork is a fellow ACC wearer-fighter).
Weird that the ACC Artists For A Cure Gallery is mentioned, but not linked in the story. Mr. Blair is on iTunes, if you want to check out his songs.

ACCRF is a fantastic foundation created by a fellow ACC wearer-fighter and her family. ACCRF has been responsible for supporting research that moves a bit closer to figuring out how this rare cancer works, which benefits current and future patients of this and other cancers. You can bet your socks that if you donate funds directly to this worthy organization, the money goes directly to research.

Celebrate spring with eagle-watching!

I found this site showing the eagle nest in Decorah, Iowa. I figure watching new life is a better use of my time these days, and thought you might also find it interesting:

One eaglet hatched this morning - two other eggs remain. The ustream site has ads that show up, but I muted it and keep closing the ads, watching the eagle. Here is more information about the American Eagle:
Who links to my website?