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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Thursday, October 22, 2009

Adapt or die

I wonder if I went to nursing school solely to manage caring for myself.
I'm home and using all I've learned, all my savvy to try to make life work. Hopping in the shower is not so easy having to keep my dressing managing the tubing and having my oxygen on hand "just in case."
I'm constantly readjusting myself and my body to the situation like a case study in Darwin's theory that if we fail to adjust we die. At least I am a master of adaptation.
All my critical thinking is dedicated to how my life could be made easier using advancing technology along with good old-fashioned nursing and medical skills. 
Good thing my myopia (that's short sightedness people) extends only to my eyes, so I can apply my personal survival techniques elsewhere. 
I have a meeting Nov 2., and then I will formally join the Review Board regarding Health Information Technology.
I think I'll be good to go with chest tube still in place, but hopefully the oxygen gone. That puppy is not coming out until the third. 
I am still draining a little from the site but only 50 -100mls daily. Anything above 200mls should be reported to the surgical team.
My site looks great, according to VNA. I could only confirm that myself if I were a contortionist.
 I still have an air leak surrounding the incision, But I did get up, get dressed and get to the drs without using my oxygen!! 
I can feel myself healing. 
It has only been ten days since my surgery.
 Our rush-rush society has trickled into our healthcare and our attitudes towards healing. 
I had a biopsy into an area of my lung that has been radiated three times, it's not going to hurry scurry and heal the way we'd all like it to. 
There is often a huge difference between what we expect (or the what the insurance company will fund, what a professional wants to allow) and what's real.
But now its rehab time. I get to chill at home watching shows with people having conversations with each other.
If daytime television is not a motivator to get moving, I don't know what is.
I'm tired. During the day I rest, moving really only to force my body into better shape and take care of my needs.
I think I may start dancing again- really dancing. I know there is a problem if I'm not at least shaking my shoulders in the car. Dancing reminds me that my body is beautiful and I'm in control. 
I've been keeping hush-hush about my fly girl days in College. I was one of those girls who hit the club with my girls and our synchronized dances that made people stop and watch.
I like to watch those cheesy dance movies, always out of NYC of course, and think, "Yeah, we were hotter," and I do still watch the Beyonce videos to make sure I'm still at least as good as her. There was a little bit of time when our moves would have put her to shame.
I have been making jokes and even getting the giggles, too.
Eventually, this will all be funny.  I'm making strides. I'm moving up. 


brynn said...

I heart Hillary!!! :)

Valerie said...

Hey, Hill... glad to hear your "voice" again online. We miss you. I sent you a mix CD... hopefully it will arrive soon if it has not already. XOXO