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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Saturday, April 3, 2010

Call it Karma

Ugh, call it karma, my mean april fool's day joke has come back all ready to bite me in the arse.   
I got a peak into the alternate universe that could have been my life  had I received photopharesis on an older machine, which takes 3-4 hours per treatment.
If I wanted to take a step deeper into the realm of what could have been my personal hell, I'd imagine traveling 6 hours round trip to Boston to receive the procedure.      
But I won't. 
My mind won't go there.
 If it did the gray matter cushioning my think tank might start leaking out my ears causing random synapse firings until my brain electrified to mush. 
That's just a possibility though, not that I've thought about it. 
So thank goodness
photopheresis at dhmc can be done using a new machine that re-fuses my blood as it is removed, cutting the time in half! Hooray.  
But as punishment for my misbehaviors, my central line refused to work adding two+ hours of prep to the 3 hour procedure then I had to trek to interventional radiology only to be told to come back at 6:45 am yesterday morning!
  Yes, I spent from 8am to 4:30 at the hospital Thursday and will spend a good amount of time there Friday undergoing another procedure.
Luckily, this gave my dad plenty of time to donate platelets, which he is scheduled to do every two weeks while I'm in treatment.
What a good man. Anybody who accompanies me to treatment does have the option of donating blood while I undergo my procedure, just a thought.
It appears one of the wires in my catheter, or line, is kinked at the end. There could be a fibrogen clot flapping back and forth intermittently occluding the line. 
The end of the line is currently sitting in the superior vena cava but can be moved into the right atrium.
 For this reason, the wire must be removed and replaced. 
Not such a big deal except I have to receive conscious sedation.
 I used to love the stuff. It made me high as a kite. I'd even send "eprazolam emails" much like normal twentysomethings' embarrassing drunken dials, but now I just sleep and sleep and sleep.
 And I have plans dammit!  
Lots of plans that include fun with my friends, family and a bbq, which I need to be awake for. 
I'm warning the staff that if I ask for more versed I don't really need it, no matter how much I insist. It's just me mumbling in my drugged haze, and absolutely under no circumstances are they to give me benadryl or they can kiss me goodnight until saturday. 
To tip off my evening, while watching Bones, one of my favorite shows, in the opening scene the psychiatrist is sitting next to a person who just received the news he had beat lymphoma. The guy announces all the things he's going to do with his newfound life before a water main breaks thrusts him from his chair, he hits his head and dies.
 On that note, I'm going to bed. I think tomorrow will be better.

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