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, July 28, 2010

Naughty, naughty me

I've been naughty. 
I went a little crazy.
Then I started tinkering.
I got a little antsy with my meds. 
I think the prednisone, decadron, ritalin combo might have done contributed. 
Eitherway, I was bad. 
I needed to flex some control. 
I needed to remind myself that I'm boss over this body, even though I don't even recognize it anymore. 

How the hell did I get here anyway?

 It's theorized there are three alternatives for each decision and life splits into alternate dimensional planes based on these differences. 

This sounds over the top and boggles my mind with options, but This idea was what really sent me into emotional crisis mode. 

For one little second I let myself envision the life that may have been, the one I dreamed of, the one where I didn't get sick and reached my potential. 

Worse, it wasn't me I was saddest for.
 It rarely is. 
My life, my plans had little to do with me.
 I was going to get my NP and have a quaint free clinic in claremont with my adopted kids I smuggled in from haiti way before the quake made people pay attention.
 I was going to be simple and country and give back to the community that helped raise me one by one. 
J would have his degree and boat and workshop and toy, toy, toy etc.,etc.
My nieces and nephews would be all spoiled and we'd have weekends at the beach house.
Put on those breaks.
Nope. Not going to happen.
Not going to help others. 
No helping heal others. 
No at home orphanage with kids from fourth world countries. Instead, I tinker with my own pharmacy. 
I cut the decadron in half for my 2 days post meds. I'm now taking 5mg of pred daily which I started sat. 
Next mon, I'd like to start alternating btwn 5 and 2.5. 
I never upped the dose to 20mg like I was supposed/told to.
 Didn't like what that would do to my long term goal.
 I want off steroids and I want it now. 
No more big belly bulge.
 No more four chins and hairy hump back. 
I've had it.
 I don't look like me and I don't feel like me. 
It's been a long time since I sang at the top of my lungs or danced in the car. 
I don't think of funny stories to make myself laugh when I'm alone with myself. 
I haven't laughed so hard I couldn't breathe in forever (and it's easy to keep me from breathing)
I'm angry, easily frustrated, and intolerant.
I'm all screwed up.
I'm even balding backwards.
The cross in the back of my head isn't a cross anymore. It's just more bald space.

 I'll check with Boston sometime about my changes, but I had to cancel Mondays appointment because of the chaos this week. 
I'll try not to go crazy and play heme team on myself, but Aug. 9 I'll again be trying a full dose of some drug containing "blast" or "bam" in it. 

I'm changing chemo dates so I can enjoy some weekends.

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