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, February 28, 2010

Powerlessness




I've been feeling a whole new kind of powerlessness this past weekend. . . . .
the electric kind.
Thursday nights snow/rain/ice storm came and went and took the power with it.
The electric company had been preparing, cutting back branches away from lines for weeks before in hopes of preventing last years ice storm events when people were out of power for weeks.
Maybe it worked, I have power now. It came back in full yesterday evening.
I'm sending out a big THANK YOU to the Judd's, who immediately thought of me and ran to the rescue with a generator so I could continue to use my oxygen without fear.
The Judd's are unsung heroes in my life. They also plowed our driveway the storm before and have done countless others selfless acts of kindness through out my illness. I'm fortunate to have them as friends, as I am so many others, too many to mention.
You don't realize exactly how to dependent you are on something until you do
n't have it.
Let's take electricity, I woke up Friday to J frantically calling people from his cell phone in our bed. . . . . at 5:30 am in the morning.
He wanted to know if and where power was on. He wanted to know if X had school. He wanted to know how we would find out if X had school. He wanted to wake up, chat and hold a conversation.
This to X means, it's time to wake up, chat, ho
ld a conversation, and get moving.
J is never the parent that wakes up too early.
Too me, taking into consideration we had no power, school was unlikely, and I'm feeling drugged from taking NyQuil at night because it's the best decongestant ever for my lungs, this chain of events meant go back to sleep old man winter style.
That wasn't going to happen between two riled men, I checked my cell phone and school was, indeed, canceled.
FM has a great system where they call all parents to notify them of delays and closures. It's great when the phones work. Thank goodness for cell phones.
It's now 5:45 am, and X is ready to play. He wakes up full throttle.
No lights, no computer, no tv means no rest for mom. I talked him into a bath via flashlight to buy time when I realized. . . . . . .horrified pause. . . . . no electricity meant NO COFFEE! No coffee maker, no microwave, no stove, NO, NO NO, NO.
No wake-up caffeine for my 5:30 wake-up call.
I started taking my other medications, specifically my prednisone in hopes of waking up, but X and I were still ready to go by 6:15 am.
I tried playing any of our hundred board games, but I wasn't awake. I tried sending him outside to play with the dogs, he wouldn't go. I considered pulling out art projects, but my body and mind wouldn't comply.
I couldn't get started without my electronic routine.
I had to escape to civilization.
I did talk X into go outside with the dog's for a couple minutes. He rounded up the lids from our garbage cans.
It looked like God was playing a massive game of ultimately frisbee with those lids. They landed across the yard, a football field away from where they started.
Now, I at least I have a great idea for fun this summer if we can't find our frisbees.
We were out the door and headed to my in-laws house by 7am.
Their house was like the promised land with electricity, and they could make coffee.
The day actually turned out great.
I had all ready asked my mother-in-law to babysit.
I had plans for a "princess day" with a friend of mine.
Everybody, woman, man, child, patient, healthy, needs a princess or prince day.
This is a day dedicated to you. It reminds me exactly why I continue to fight and exactly why I love life and keep hanging on y the fingernails.
Everybody also needs a friend like the one who gives me princess days.
Maybe, sacrificing the lung function, the years of my twenties, my career and independence was all worth the relationships I have gained from this experience.
Hmmmm, I said MAYBE.
I definitely did miss my writing. Especially since I am actually motivated. I do recognize my love for my computer more now, and the washed/dryer, the refridgerator, stove, etc. I actually found myself out and about yesterday appreciating the convenience of modern facilities, and by this I mean bathrooms. Who wants to squat in a hole and then not be able to wash their hands?
On that note, For me, today, please remember, you really don't know what you have until it's gone. Appreciate it

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