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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Tuesday, September 1, 2009

Good News. . . .

Good news.
It's 6 hours post chemo and I am awake. I'm thinking. I'm not curled up in a ball throwing up. 
The bad news. 
I'm thinking. 
I thought the fear of the unknown was the scariest aspect of this disease. Now I think so few get to the point of knowing the truth it's the general consesus fear of the unknown is the worst.
This is part of the theory of my writing.
 What am I saying? I'm scared, very scared.
 Another blogosphere hodger, Adrienne, is in the hospital after suffering lung failure.
Luckily, she"s recovering, but what if this happens to me again? Will I be treated in time? 
Adrienne has had hodgkin's for eleven years now, since the age of nine. I want to know how she's made it that long. She's also treated by mysterious dr O.
 I'm really not interested in extending my clinical care team, I just want to perfect it. 
I fear the holes in care where I call and can't be seen in a clinic due to the fact my provider is out. I always thought this was the reason for a team. I don't want to struggle and cry to receive care I know I need. I know how people die trying to access care. I don't want to be one of those tragedies. 
At the same time, I'm too tired. I don't like the desperate, scared, nervous person this disease has made me, and I'm the lucky one. I have a town full of primary care providers who will always care for me if I'm "dropped."
Somebody needs to. I didn't know how much this past year had traumatized me. Navigating the health care system is like navigating through dante"s circles of hell. What's worse is I know I am in a privileged position where I am cared for by my providers more than most. 
Scarier than my situation, where does this leave everybody else?
I'm scared to tears again, and I know I'm just one suffering from our sick system.

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