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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Friday, October 31, 2008

The X Factor

Happy Halloween everybody. I hope all you women are prepared to treck around town with your children tonight. I hope you’ve baked your cupcakes and bought your candy.
Lucky me, I did not even have to pull the “Cancer Card” to get out of contributing to the kindergarten party. I rank this under “priceless.”
Even if I did, you all know if I was too busy, I’d buy them from the bakery and stick them in Tupperware.
The cancer card is a a wonderful thing. It gets me out of responsibilities and commitments basically when ever I want. I can call up at the last minute saying “I’m too tired” when I really mean I feel kind crappy and cranky and I don’t even want to hang out with myself.
It’s okay.
I don’t abuse my cards, but I enjoy the points and perks.
I do not get to pull this card with X. He is unique. He is a special co-survivor. Let’s call him “the X factor.”
X knows I have cancer, but doesn’t quite grasp the idea of this disease.
When I was diagnosed, he was just barely three. We told him bald moms were normal and thought I’d be cured in 6 months.
Now, he’s five and the other kids are telling him a bald mom is weird.
We also used to tell him I wouldn’t die. He now knows this isn’t a guarantee and we’ve discussed this. He can ask questions whenever he is interested.
He calls my wheelchair a “mommy stroller” and yells at me for hogging it.
“You can’t stay in there forever,” he’ll scream. In his mind, I’m just a lazy stroller hog.
He has extreme separation anxiety. I’ve tried to remedy this by taking care of him with a strict morning routine that, no matter how terrible I feel, I try to follow.
I drive him to school. I drop him off at the door.
When Jenn picks him up, X has the option of coming directly home or hanging out with his friends. He is so excited he gets to make “choices.” He feels independent and in control.
He understands the anatomy and explained to me how a hickman line was placed yesterday. He can do a full physical assessment with a stethoscope. He’ll either hate science or love it when he grows up. I don’t care as long as he is happy.
He also guards the house and the rules. Don’t you dare try to enter our home without washing your hands properly and wearing a mask. He’ll start charging at you from the living room and push you right into the bathroom.
You will be coming no where near me unless you wash your hands with soap and water while singing the ABCs. Then you need to dry them and put on purrell. After that, get your gloves and mask on.
Only then are you allowed to come near his mother.
He’s started teaching this process to his friends, who sometimes cry when they come to our house. They know X’s mom is sick, but they don’t understand all the weird rules. It makes them cry.
It doesn’t bother me. It doesn’t even bother X. He just goes right on teaching how they can enter the house to play.
The mom’s all say they’re so sorry and they’ve tried to explain to them the best they could about my sickness.
I think the reaction is great. I only have friends that are wonderful parents. I know they’ve done their best to thoroughly explain our situation. I tell them not to worry about it.
Crying and fear is a normal response in a five year old. Hell, fear is a normal response in adults.
I want these children and adults to get comfortable with me as a person and not simply as a disease. I’m all for shocked reactions and explanations since I know they’ll be able to reference this experience in the future and use it to react in a socially acceptable manner with someone who may not be as strong as me.
That’s why X is a rock star. There is no doubt in this. We all know it. We all see it, but today, he’s just going to be a ninja turtle.


Lina said...

xander sounds like a gret kid. mama's boy, isn't he? i'm sad i missed him the last time you were here.

Meaghan said...

He IS a rockstar - but you and John have also done an awesome job raising him, don't forget that. You're all surrounding by so many people who love you..

Sorry I've been MIA for a couple weeks, but I'm BACK!!! Have fun w/ the little ninja turtle tonight!!