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, February 1, 2011

Cancer My Day

On some of my worst days I wake up and know I'll be going straight back to bed as soon as x is off to school, if I can get him off to school. 

Often these mornings lead to desperate phone calls to my dad or brother to get x to school. 

Either way, I end up collapsed in bed or on the couch. Do not pass go. Do not collect $200. 

Whatever plans for the day, canceled, or cancered. 

No shower. No breakfast. 

Silly me, no food or drink.

 I'm in a chemo-induced fatigue quesi-coma. I feel like a lump, a big growth coming out of the couch. I feel dirty. My stomach aches. My back flares. Even my skin and teeth hurt, if you can imagine that.

I hope you can't.

When I wake it takes an hour of thinking about moving to get up, even if it's to head to the bathroom.  

And you thought your motivation for exercise was bad.

I always set my alarm, hoping its a transient attack of fatigue. I pretend I'll wake up before 2:30PM feeling well enough to get X.

I rarely do.

Again I scramble, I call my mother-in-law, who hopefully is available to pick X up. 

If not, I do it. Luckily, X is old enough to fend for himself, but leaving the house feeling like I do is an act equivalent to climbing a mountain to the everyday healthy person.

I'm beginning to feel like Atlas, the mythological character that was punished by the gods to roll the weight of the world up a mountain only to have it roll back again when he reaches the top.

 The weight of the world is on my shoulders, and just as I feel some relief, like reaching my destination or becoming healthy, the ball drops. 

My body reminds me who, or what, is in control, and I am either laid up in bed or scrambling to the hospital.

I know why this happened.

My medications tricked me again.

 I was feeling, dare I say, normal. 

Everything has been going so well. I had an amazing chemo holiday. 

Chemo has been going well. I'm generally back on my feet by the end of the week.

 I've been going on road trips, to basketball games, chuck-e-cheese and the mall. 

But all this comes at a cost.

I'd attributed my increasing health to the treatment holiday, a more healthy diet, and exercise. 

I didn't completely dismiss the role of my everyday medications.

I started to get irritated with my prednisone. My face is swelling. My cheeks are rubbing against my chins. I was starting to eat like a maniac.

My irritability is increasing to the point that if you piss me off I'm ready to rip off your head and spit down your neck.

So I started to taper. I dropped my dose from 15mg to 12mg.

Bad choice.  It was too big a jump for a woman with Addison's.

I should have started at 13mg and varied to 12 the next day, which I normally do.

But for some reason I didn't and I coupled it with a sleep over and run to Boston. I exhausted myself, which I can never allow myself to do.

Today, I'm back feeling like myself, thankfully, and will again be able to update everybody on their burning questions.

I haven't forgotten about my GVHD eye question. Mystery person, you can always search the sidebar and old posts will come up about Dr. Dana at Mass. Eye and Ear and my previous attempts. I will tell you about the NY Times, Pink Pint Night, and The Huffington Post... soon.

1 comment:

stonepost said...

Hillary I so understand what you are going through! About the pain in your teeth? are you taking any "D" vitamins? I should have but didn't and this "cure" cost me a couple teeth!! One little note. It was Sysiphus who gets the job of rolling the rock up the mountain, not Atlas. Makes no difference though, the point to the story is we all have to do it!