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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Monday, April 6, 2009

Sick Joke

This whole week, and possibly my whole life, is one sick joke.
You get it? Haha. It’s definitely a SICK joke.
If you’re not laughing at life, you’re not getting the joke, but I think the man in charge is getting a little quirky and morbid with this one.
He’s crossing the line because that’s what this is, one sick joke.
I feel like there is a little kid with a magnifying glass over an ant hill, and I’m an ant.
I feel like I’m a puppet and the strings that guide my life are being pulled for me.
I have had an allergic reaction to anti-nausea drugs that caused dyskinesia.
This, is literally, your nervous system pulling your strings without you consent.
Your body is a puppet, something else is running the show.
I likened it to Parkinson’s Disease.
I’m so lucky this wasn’t permanent. It can be. I won’t be taking any of those drugs again. No way. No thanks.
X had his appointment this am. Surprise, he can’t hear. Okay, so that wasn’t a surprise at all. HE is going to see an audiologist at the end of the month. Then he’ll go to Dr. Ryder again to see if his fourth set of tubes are necessary.
I’m seeing big time Dr. Dana for my eyes tomorrow. I hear he is brilliant. I hear he is also nutty professor brilliant and may not be so social.
I’m not looking for a new best friend. I’m looking for a doctor that will keep me seeing for a very long time.
However, this does sound like a challenge. I’m sure there is a personality in there. I like to coax it out. If he gets to understand me I want to understand him. That’s the way my story goes.
I’m still trying to organize exact care for X for the week. He’s being picked up from school and being cared for by some close, lifelong friends Tues, Weds., and Thursday until Jon can grab him.
Barry, one of his caretakers, was babysat with me when I was 5. We hung out together at his mom’s house. We’ve been friends ever since.
Now, life has started to go full circle, and we both have children. It’s exciting when people you’ve grown with continue to grow with you.
The mornings are harder to organize. On Tues. & Thurs. Jon will bring him to school. On Weds., we’ll bring him to school together.
I used to take Xander when I had these long weeks of appointments. It was easier to know he was cared for. If my PET comes back positive, we’re getting a nanny.
We did the math and a live-in nanny, if we provide room and board, which we have, is cheaper than one hour a week with a therapist.
This is a sad but true fact. We’ve started searching We’ve also considered taking in a student. The right person, at the right price, with the right arrangements will come to us if this is what we need.
We’ll need something.
But maybe we won’t, because if my PET is negative, I can go on with my life. I will heal with out the concern that eventually I’m going to be beat down again by therapies.
It’s a huge crossroads.
These diagnostic tests and scans determine the route of my life to a certain extent.
If it’s negative I can ease back into life, continue to recover, and start again in industry I enjoy.
If It’s positive, all hell breaks loose.
It’s not the end of the world.
I keep reminding myself, that it can’t be the end of the world, because the day all ready started in Australia.
My problem exists in Australia too. See
There can be good news in this. The American Medical System can be our redemption in the world. The ill travel here for their care. Since the finance debaucle and the failures in the automotive industry, the United States is floundering to regain a niche in the world order.
If we make our niche quality, cutting edge health care, our problems will ease, especially those regarding foreign affairs and the view of our country.
Maybe, we’ll put an end to this long running sick joke.

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