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, January 28, 2010

A Day In The Life

It's midnight and I'm awake. I'm up even after having taken 1mg of ativan to put me to sleep for the night.
The steroids have a habit of waking me with racing thoughts, but some chemical imbalance starts it all by cramping my feet or hands in my sleep.
I awake to them twisted and painful refusing to move back into position until I hop out of bed to walk on my feet and pry one hand open with another, massaging my screaming, contracting muscles.
This is probably from some electrolyte imbalance, probably a deficiency in something.
What? I have no idea, maybe K+ or calcium, but I certainly haven't compensated for it in my diet even with all the mangos I have been eating for my K+ and yogurt.
I'm probably going to need some blood work to discover the root cause of this problem. A chem7 at my check-up Monday would be nice.
Good thing I don't have many responsibilities that this interferes with. Walking at odd hours with weird, painful symptoms is something I've leanred to take in stride.
I just live on my schedule.
Which reminds me, another mom from X's class sent one of the best forwards ever on getting old. It brought tears to my eyes knowing someone else felt the same as I do, that age is part of life and to love the grays since so many die too young to see them.
I embrace the gray hairs popping out of my head, silently celebrating each time thinking, "Ha! I made it to be old enough to get one" or "Yes! I have HAIR!"
I love my time even if it does come with bodily wake-up calls at midnight to eat my comfort food of honey nut cheerios before I can sleep again.
I'll share the forward with you.
It amazes me how close I came to not having this.
I keep looking around the world and wondering what it would have been like if I had let my lung issue run its course.
Everything I've done since this, everyone I've encountered, everything I made would never have happened.
Check the family portraits on the right, my latest artistic endeavor, no, those never would have existed. Many of you may never have known I could draw.
I like to think of them of the new wave, modern portrait or silhouette.
In December the inflammation from my GVHD attacking my lungs had become so bad I was drowning in my own frothy mucous. The cilia in my lungs were irritated by inflammation and being stimulated to make mucous, too much mucous.
GVHD, in essence, is the manifestation of inflammation in organ systems.
The mucous caused a reflexory cough that I didn't even realize I was making. I'd hear coughing, but it sounded like it was coming from someone else.
It wasn't coming from me, not my body. I wasn't in control. The respiratory center had started to take over.
I thought a lot about where I would draw the line in my care at that point.
That is such a terrible weight to have to carry with a young
family, but luckily, the prednisone improved the situation and I don't have to make the decision.
Thanks for commenting Anastasia. You seem so interesting. I'd love to chat sometime. This great inflammation cartoon is for you.
My schedule includes a playdate with my friend BR this am and a trip to Natick tonight to sleep over at my sister's house!
I have big plans for Boston. If I have to see a Doctor I might as well make it a good time, and I'll share my die-hard sick travel tips with you along with the details.


Anonymous said...

Awesome drawings!!


Anonymous said...

Your family portraits are beautiful. You truly are an amazing lady!