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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Tuesday, March 30, 2010

It's been one full week of nausea, vomiting, diarrhea, with a diet comprised of gingerale, cranberry juice and ritz crackers and guess who has gained 5lbs?
Yeah, that'd be me.   
Thank you steroids. 
Even the BRAT (bread, rice, apples, tea) diet can't keep me from swelling. 
Look on the bright side, At least all that fluid retention hasn't manifested itself into heart failure. 
Let's take a second to thank God for small favors. It is Holy week.  
 I have always enjoyed the magic of this week. Something about its ceremonies bring a feeling of mysticism, even to me, who confesses to not being the all-star catholic I probably should. 
I love receiving palms on palm sunday and pretending I'm living in ancient ages waving them during the parade. I like seeing the ash cross on peoples' foreheads and watching the faces of people who don't know the cermony thinking the world has gone mad, lighting the center of their foreheads on fire.
My favorite is the refreshed feeling of having received a blessing. I especially like that, at least for that moment, all my sins are washed away and I'm perfect. 
This week gives me a feeling that anything is possible, including miracles like walking on water and rising from the dead. 
 I always look for the sky to inexplicably darken at noon on friday when Jesus is said to have taken his last breath. Good friday is plagued with odd weather more often than not. And then, did you know, after Jesus took his last breath, he wasn't sent to heaven, which I think is what most people assume.
 If he did  Why would dying be a sacrifice then?
No, He was thrust into hell and had to battle satan on his turf, which he was able to do because he was without sin.  
This is why people say God gave us his only son. Jesus was killed and sent to the lair of his father's worst enemy. He was delivered to the hands of the devil. It'd be just like delivering your child to a seriel killer. 
But I'm off my Holy rolling tangent. 
On to the Good news!
 Andy is home! His counts came up enough so he can spend a few days at home before traveling to Boston. 
On Monday his family travels to boston to sign consent forms. 
According to my specialists in beantown, I'm looking good too. My lungs are clear!!!
 It's affirmative. 
It's official. I haven't been lying about how great my lungs have been. 
Dr. W, the pulmonologist
suggested I alternate my prednisone between 30 and 20 mg doses before lowering to 20mg in two weeks. I like this. I've been able to sleep. I'm not zooming around in manic mode. 
With any luck, tapering like this will have my back fat hump gone by summertime. 
Yes, you heard me: back fat hump.
 It's part of cushing's syndrome associated with excessive steroids. That and excessive hair growth with a moon face and massive weight gain. 
I've finally come to realize, and accept, that I am unrecognizable I'm so bloated. 
My dimples don't even exist since they've been swollen outward, but if thirty extra pounds and looking like a cabbage patch kid is the cost of breathing easy, I'll take it. 
The back fat hump wouldn't bother me so much either if x didn't insist on monkey biting it when he decided I was misbehaving.
 For those of you without rambunctious seven year olds, a monkey bite is a pinch with a twist, designed to inflict pain. I can thank j for teaching x this important life lesson. 
I've been given clearance to stay away from Boston until may 1 as long as I continue with photopheresis follow up at dhmc and send updates.
 I love it. 
I'll take it.
 This is some of the best news in a while. It ranks right up there with the likely passage of reform, my receipt of a life grant from Cameron Seimers Foundation, and andy coming home. It's a damn good week so far even if I'm still napping all day and eating crackers.


Anonymous said...

sounds like a blessed miracle of a week to me! Happy Easter to you all! ENJOY!

DebA said...

Bravo you desire good news! Happy Easter and thanks for the reminder of why Holy Week matters. Enjoy the week and keep the faith you clearly have in bounty!

Anonymous said...

Glad to hear your lungs are clear! Happy Easter to you and your family.