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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Sunday, August 15, 2010

I've made it mostly through the pain of chemotherapy. 
I'm still exhausted in the afternoons.
I still haven't mustered the tolerance to clean anything.
I'm in the "hanging out" phase of recovering.
About this time, I'm just around, hanging around, having fun, not doing much, not contributing anything.
As soon as I get beyond the "kicked on my ass phase," there's a "exhausted/groggy phase" and then there's the "hanging out" stage before we get back to where I call normal. 
Where I call normal is very different from everybody elses, but its working out for me.
In the hanging out phase X and Lex created there very own playroom by cleaning out a place in the basement. I got to supervise and offer up all our old furniture collecting dust

In the medical department, I cut my decadron dose down to five before during chemo so this time I cut it to 2.5. 
I ended up taking it 3 days instead of two though because on day 3 the mouth/jaw pain hit. 
I also cut my pred down to 2.5 and.... My gvh is coming back in the eyes and mouth. 
I knew it would happen sometime. I'e allready started with the maintenance therapy. 
For my eyes, hot packs to the eyes twice daily for 10min and drops six times daily or risk possible blindness.
I think I have an eye infection. I've been sloughing white cells. I need to see Dr. Dana, the Boston Eye Guru.
He, supposedly, has the cure for GVH eye problems.
I believe he has it, but I don't qualify for the study.
I can't remember how much it cost.
Either $3600-$4000 total or $390 a month- FOREVER.
I know, I know, those two estimates are kind of far apart.
I remember hearing $390 a month.
Then I went blank.
That's more than my car with insurance, possibly gas on a good month.
How awful would it be to go blind because I can't afford the cure.
Sad, sad.
Luckily, we will swing that.
And in more good news, I'm getting off the steroids.
I'm feeling better. I've been able to be more active, less cranky, and all in time for my special day. . . 
I turn 28 years old tomorrow!


Anonymous said...

HAPPY BIRTHDAY HILLARY!!!! I'm sorry we missed you and Heather yesterday in Portsmouth. I tried getting ahold of Heather, but I think my sister said her phone was broken. Have a great day and a blessed year!! I hope to see you before I leave on my trip.
much love,

Anonymous said...

HAPPY BIRTHDAY HILLARY (AND HEATHER)!! Hope you're feeling up to snuff soon!
Laura and Doc