Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Wednesday, June 9, 2010

Official HIEPI Stakeholder

I did it!
I made it to the heipi stakeholder committee meeting,  And Whoa does the government like its acronyms.
 I've decided I don't need to memorize what hiepi stands for as long as I know what were doing. 
I thought heme/onc specialists were bad with their pneumonics for chemo regimens. 
I was able to go and go quesi-independently. My dad as been my long time chauffeur/ chaperone bc I don't drive but by an act of God a former coworker, patty, was assigned to the group and same subcommittee! I was able to car pool with her like a professional independent grown up. 
I've never had the luxury of attending large important meetings. I hadn't reached that phase in my career before it was snuffed out. I've always been curious about the happenings. 
It's really not that different from any other informal meeting and the environment can still be compared to high school. Unfortunately I don't get to play prettiest, smartest, or most popular in this world, but it does make me wonder how many present today are as tech savvy as a teenager managing their cyber social life.
 It turns out at least one is, my group leader helped found, an entreprenuerial effort where patients use their data to track trends in understudied diseases such as als. 
As a techno geek, I was star struck. 
Clearly this isn't high school. Bald heads, suits, degrees and accomplishments prove that.
 Stupid questions still exists, but now they're of smarter quality from highly educated people. That person will still ask an inane question at the worst time, such as the end of class or after we've been told "no more questions."
There is still a diverter who tends to throw the group off course with something that seems relevant until it's kept up for 20 min. There are nay-sayers and negative nannies who dislike everything and thrawt the process. 
That person is different from the "devil's advocate" who poses questions and points for the betterment of the idea. 
There are still class clowns but now they know when to be serious, and Luckily, now there is strong leadership that can squash people from leading the group astray with a simple, "I think we need to get back on the subject here." 
There is still a Hierarchy, which has yet to be determined, but I'm excited to say I ran into Bill, third most pwerful man in the state on this project, and he was delighted to see me!
 How is that for boosting self esteem?
 The man who hired the geniuses, gurus, business analysts and others to implement an electronic medical record database is happy to have me! 
He even created a space for dad so I could always have my side kick.
 Guess who feels like she could be a cool girl now? And at the end of the meeting, out of all those people, he came to me to say hi! Yay. I'm happy with the 50/50 male/female ratio but unhappy with the patient/ practitioner representation. 
The patient doesn't even make it onto the incomprehensible health info flow sheet as a stakeholder! 
If you want to see something created, I'm your girl. Send the ideas.

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