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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Monday, April 12, 2010

Lucky, Lucky Me

My tongue is starting to hurt with the threat of an ulcer forming on the right side.
This is an ominous sign. 
It is a warning from my body.
It's saying "something isn't right" or "you're about to get sick."
 One of my many specialists said personal signs of impending illness, like the ulcer that appears on my tongue, are common among patients like me, patients that are immunocompromised and always on the watch for indicators of illness. 
It's like an aura with a seizure. It's the transplant patient warning system, unique to each individual. 
I'm listening. 
I'm taking it easy this weekend: went to x's baseball practice, had friends over. 
Today was special. Today I decided to resume "normal" life. 
I pushed my body, just a little, to see what it could do. 
It's like test driving a car, but I've been living in this vessel my whole life. 
My current body is not the body I know love and accept. I lost that body in August along with my lungs. 
I haven't been able to psychologically overcome the events of this fall. 
The fear was paralyzing: the fear of suffering, the fear of not being taken care of, the fear of not having my needs met. 
Even if I denied these fears, I'd have terrible nightmares. 
It has taken this long to brave cultivating my body. 
I didn't (couldn't) push the limits or even see what I was physically capable of doing for fear of failure. Failure meaning exhaustion, respiratory distress or death.
Those are high odds.
 For the first time ever I had no desire to get my body back into tip top shape just in case I had to undergo more treatment. 
I didn't research myself into a tizzy or see a hundred different complementary practitioners while ingesting supplements of every variety. 
I did the tried and true methods, but I certainly did not work on working out.
 I think I finally hit the wall. I'd met my statute of limitations on suffering. I relinquished control. 
And that feels good, like a responsibility has been lifted. 
Trying everything and anything by any means necessary took too much of a toll.
 Now that I'm done indulging in guilty pleasures (who really needs to eat four cadbury eggs or two full sundaes on a sitting?), I think maybe it's time to start some regular activities. 
My body is allowing me to do normal activities!! 
I may be feeling ill, but not my lungs.
 I took a half mile walk, played catch, basketball and wall ball with xander. 
I had a regular, active day that we may have had a year ago.
We worked on the house together and made plan for camping and parties.
 I am so excited. I am so blessed something has gone my way. 
It's gone my way in a big way. I am not "normal," but I'm at a place I can accept and enjoy. 
My lungs are not the big limiting factor. I'm not stopping activity due to shortness of breath, cold sweats, dropping blood pressure. 
I'm stopping due to pain. Pain from exertion. Pain in my back that comes from who knows where. Chronic pain, which I'm lucky to have options for.
Pain I can manage. Thank you palliative care. Keep those scripts coming.
I even put some flowers in the garden. Well, X wanted his own garden so we sectioned him out a portion and planted together. It was difficult to get from siting on the ground to standing, but I'm digging holes! 
These are things I never thought I'd do again. 
Lucky, lucky me. 

1 comment:

Anonymous said...

I'm so glad you've been able to do more. The garden looks great! I'm especially excited the peony's are looking great! Hope they're still open when I come home next week. Love you lots!
<3
Grace