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Friday, March 30, 2012

Spring is all around

Sending good wishes to all readers, and hopes that spring is being good to you. Things here are ok - some ups, some downs. I get up and head to work, happy that I have a great job and work with good people. I check my digital connections and see that I have many wonderful friends. And I was able to be present to watch an historic NCAA game here in Omaha (Norfolk over Missouri - both teams gave it their all).

In addition to having the wonderful game to look forward to (thanks to the generosity of my great mentor!),  I joined the club of new Lytro camera owners! (Last year, the highlight of my spring was winning The Box from - this year, it was waiting for the arrival of a brand new Lytro). You can see my first efforts on my picture gallery site: . The cool thing about the photos (if I have taken them right) - you can click within the picture and refocus the photo on different parts. Try it with the library dinosaurs.

Another cool activity - my library is taking part in a discovery project to see how iPads can be used to add productivity and information resources to health professionals and students. There are a lot of health science librarians taking part - if you are near a medical facility that has a librarian in NE, KS, MO, UT, CO, WY, there just may be a shiny new iPad being worked over. We librarians are a demanding bunch, believe me - substance and results trump style every time.

I have been touching base with some fellow ACC-wearers, either by direct email or through their blogs or Caring Bridge sites. If you know of anyone that wants their story highlighted here, please get them my blog address and ask them to comment. I would love to share their story.

Some other things have gone on that I will post later.

Monday, March 12, 2012

Just heard - Christopher Lyles died March 5th

My deepest sympathy goes to Mr. Lyles' family for their loss. He was a true explorer as the second person in the world to receive a synthetic trachea. Here is the obituary I saw today, from  The Baltimore Sun:  
Christopher Lyles, Defense engineer,0,7288440.story

I will forever be in the shadow of this great man. His sister says it all: "He put his life on the line so other people can live longer," his older sister, Erica Greene, said of the risk the surgery presented. "In the future there will be tracheal transplants [in the U.S]. But someone had to be the first do it."

More about what Mr. Lyles did, as covered by the media and linked through some of my earlier posts:

Saturday, March 10, 2012

Cancer in the news

Thanks to BoingBoing (, I saw this story yesterday:

Cancer is even more complicated than we thought

quote from the story: "Scientists have long known that the same type of cancer can play out in very different ways, from a genetic perspective, in one patient compared to another. But this new research shows that, even within the same patient—even within the same tumor—different samples of cancer cells have more genetic differences than they have similarities."

As a person with Adenoid Cystic Carcinoma, I figured on this all the time, but find it interesting that they say all cancers are more complicated. When we who are ACC-wearers check in with each other, we often find very different stories about how things (treatment side-effects, progression or regression of the cancer, etc.) are experienced. I bet if we had 200 of us rare cancer wearers together, very little would be in common outside of the biggies of us all having cancer invade our persons and our lives, and living through 'the valley of the shadow' of treatment and healing. Our doctors (gp's, oncologists, surgeons, take your pick) are basically bookies (well-meaning, excellently trained, caring), trying to outguess where or even if the cancer is coming back (pretty much with ACC, they agree that the "when" is a given, if we live long enough otherwise). So far, I am keeping my bookies poor - their bets haven't been successful, and I am still casting a shadow and paying taxes, while dodging expensive tracking procedures that haven't been proven to lengthen my lifespan.
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