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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Friday, October 16, 2009

Updates from the last few days

October 15
I pulled a "Hillary."
For those of you who don't know what a "Hillary" is, it's doing something very wrong for the right reasons.
For example, this morning, I thought I'd worked well to gain my independence so after breakfast I unplugged myself from suction and headed from the bathroom to wash up.
Well, my pain was just not that well controlled.
I made it, sat down, peed, and then realized I wouldn't be getting any o2 on the toilet. I pulled the chord (afraid I'd pass out) and tried to wheel as quickly as possible back to my o2.
When the nurses finally made it in to check on me, trying to decipher what is going on, I didn't receive any intervention.
I just crawled back into bed, myself, huffing ad puffing, scared, wanting to breathe, and wishing somebody would help.
I really wanted to be up, moving, and in the groove towards independence. I think the little episode has made me sleepy.

October 14
I made it out if bed today to wash myself up. That's my accomplishment for the day. It's significant. I still have an air leak which leaves me really short of breath when I am only on gravity drainage.
I still need my suction. The gasping for breath makes that clear.
My am wash up put me back into bed for another six hours or so, exactly the amount of time Steph had to hang out.
Yes, I've been a little lonley here with mom at heather and everybody else having lives. I won't see X until tomorrow due to my surgery, his soccer and that dad gets tired working, parenting and trekking the hour round trip.
So I am here sans book and computer, losing my mind. At least this motivates me to move. I look at recovery like training for an event.
That event is my soon to be normal life. I schedule goals and accomplishments for the day so I can feel like I have many successes and keep my mind off the loss of function. I don't see set backs as a loss exactly.
I try to see where I need to go and make a plan to get me there. Then I can focus on where I have came from and not "where I should be. Oh whoa is me".
Do you feel me? Now I am moving independently with the pump, detaching and reattaching so I can go where I'd like even if my lungs don't let me go far. I am hoping to hear from heme by the end of the week regarding how this weeks' events effect my overall treatment. I would definately like to know what's grown ASAP and if it's nothing, I think my head may pop.

1 comment:

linda keenan said...

hillary, what book? ill send a copy there STAT. just tell me.
xoxo - linda k.