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, November 4, 2009

I’m really on a roll with this whole “good news” thing.

Maybe you all won’t quite get it, but here are somethings worth celebrating.

Xander is getting his H1N1 shot.

Yes, I hear getting a hold of one of those things is like hitting the lottery. He’s going to get it tomorrow afternoon.

Thank goodness, because as far as near misses go, we all know I’m the queen, and one of my very close mom friends’ son was diagnosed with the virus Tuesday.

Here is the near miss: we hung out last week and had planned to see each other Saturday and Sunday.

Unfortunately (or fortunately) we didn’t meet up Saturday and my I-can’t-breathe mental breakdown canceled our plans for Sunday only five minutes before they were going to set out to my house.

Poor woman, please pray for her.

When she met with her transplant specialist last week she was only given a 40% chance of survival if she contracts the virus. She has all ready been started on tamiflu, but can you imagine how conflicted you would be if you had to choose between risking your life and caring adequately for your child?

Can you imagine the fear and anxiety waiting to get a body ache or fever? Talk about waiting for the executioner to drop the guillotine.

This also lends to the debate regarding how far should the community go to protect peoples’ privacy in the face of a possibly lethal virus.

Both of our childrens’ school districts have stated they can not notify us, or any of the other parents, if H1N1 is present due to privacy laws.

I think HIPPAA is being taken a little out of context here. What is most important is the health of the public, without stating the infected individuals name there is no break and protocol.

If you were to review the law, the primary area of protection is electronic communication between offices. Some offices I frequent actually are able to maneuver around HIPPAA (not having to have their patients sign all those nasty paper wasting forms) by not using certain technology.

In Mass., an infection is blasted all over the media and practitioners have the right to forcibly quarantine patients who will not quarantine themselves and may pose a significant risk to the community.

How can the rules be so different so close?

I'm going to Boston.

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