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, September 2, 2010

Who would want to be me?

UGH, I don't know what I did.
I don't know what the hell happened.
But blogger has been denying me for a week saying my password or login was wrong!
I then submitted a report and was DENIED. I don't have enough proof that this account is mine, apparently.
I thought, maybe, somebody stole my google cyber world.
But, really, who would want to be me?
I thought, maybe, I may never blog again.
That upset me.
I'm hooked. I'm addicted. I need an outlet. Don't ever let me threaten again.
I thought, maybe, I'd lost my mind to chemo and forgotten the name and password I've been using for the past two years.
Then I thought, maybe, I'd gone a little crazy with my meds and decided to play on the computer.
I finally called Danielle to confirm my gmail address. With her assistance, I typed everything in, and wha-la, it worked.
And not soon enough.
I've had big things going on. Big things.
Here is some of what you've been missing. . . .

I skipped over all the grieving stages and went straight to pissed after getting the results of my pulmonary function test.
My vital capacity is at 71 percent of expected; down from 79 percent in june, at the start of my velbam. 
I'd been requesting pfts knowing this chemo could damage my all ready sxrewed lungs. 
But again, my requests were ignored, again, or forgotten, to my own detriment. 
Ironically, my diffusion capacity has improved. That means though I can take in less air, I can process it better. 
Thank you photopheresis.
Fuck you chemotherapy.

I lied.
I can't stay away from writing. 
And unlike so many, I see no reason to keep it private. Wanting to do away with my fav things is a normal part of depression.
I wonder, is this normal?
 I finally peeked at an old friend's site. 
Dr. Steve Meersman was diagnosed with ALS in 2005 at 38 while working with me as a surgeon. 
I never read the "online diary" he kept while he was dying.
 I finally looked.
 I was hoping he wrote about how it felt to know he would die and how. 
I wondered what he worried about or felt for his kids and what it was like for him to know he'd never see them graduate junior high, forget about hs, college, marrying and having grandchildren.
 I didn't know how gruesome or terrible it would be. 
It wasn't either. It was straight forward, to the point. 
It monitored day to day activities but spared most emotion. 
I'm sure he spent just as much time staring into space wondering, what am I going to do? 
How will my family live? What is there life going to be like? And why can't I be in it? 
Luckily, my husband easily took over the breadwinner position and my previous head of household status gets us a decent ss check. 
Financially, they'll be just fine. 

While making my sons back to school brownies yesterday, it dawned on me that I had never, ever, in my life, cooked up some pot brownies. 
I don't know what I've been waiting for?!
 The marinol is inconsistent. 
The cezamet is expensive and does not give me the giggles. 
I call foul. 
These pharma companies are giving me the swag of medical marijauna.
It's time to cook up some good times.
But even then, I think I'm still getting the raw end.
I just saw my fist episode of Weeds and it introduced me to "Pot Heaven" over in CA.
You get to pick your side effects.
You can get your weed in lollipops.
I want adult lollipops!
I think MA just made medical marijauna legal, and it's definitely time to make an appointment with my experts in Boston.

 It's 5 days post chemo and I still want to curl up and sleep all morning.
 I was hoping my new meds would give some relief.
 I just started synthroid.
 My B12 shot came without a syringe. 
I'm leaning towards cutting treatment down to once a month in hopes of getting some energy.


Colette said...

Hey, its Colette :) the pot brownies sound good lol. We wana come up soon and see you!! we should make it a baking weekend. LOve you and miss you

Loraine Ritchey said...

Checking on you everyday Loraine

Anonymous said...

Been thinking about you a lot Hill ... & hoping that you are gaining some strength.

Hope you are enjoying some of this nice weather ... call if there is anything I can do to make life easier.