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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Saturday, January 16, 2010

Hot Mess

You have all heard the song by now.
It's probably stopped popping on over your speakers and scaring you if you are a dedicated reader and checker of my page.
It's Hot Mess by Cobra Starship, and it had to make it onto the blog for describing exactly how I feel about myself.
I am one hot mess.
I hope you have all fallen for me.
The term hot mess has been around for a while. It's old enough to be a term used in a slander suit where one blogger labeled a model as her favorite hot, ghetto mess.
Apparently he didn't like that very much. I think it may have been the ghetto part. He sued and won.
I'm a hot mess, because with all my problems, I'm still keeping the cuteness factor.
I don't think anyone is going to argue I'm a mess.
For the past couple months, I've been wishing, day in and day out, that I just had one bodily system that would work in its entirety.
I was experiencing major body, multi-organ failure, hence the hundred medications.
Each organ system required a different medication, prescribed by a different specialist.
Now, humpty dumpty seems to be put back together again with the addition of one medication: prednisone.
Ah, yes, the mighty prednisone.
I remember the very first time I was forced to use it. I was adamantly against it due to the side effects: bone loss, addison's disease, hirsuitism (hairiness), moon face, hump back, anxiety, mood swings, sleeplessness. The list goes on and on and on.
There was also the fact that one of my favorite sayings as an ICU nurse was "when the cause is unknown, give prednisone."
It's a band aid drug. It doesn't actually fix the problem, but it makes you feel really good while you're taking it.
I needed to feel really good.
I had forgotten what good life had holding for me.
During my entire illness, I've maintained a dialog with God.
Like I hear most people with a possibly fatal disease do, I've been bargaining with him for the past four years.
I'm okay with suffering as long as my suffering serves a purpose, as long as there is some benefit to the greater good.
At the beginning of my disease I wondered if I would contract a refractory form of lymphoma resistant to all medications so when I was cured everybody would truly know it was a miracle, a work of God.
I certainly did contract a resistant, refractory strain of Hodgkin's.
In exchange for suffering and doing God's work, I asked that some systems be left off-limits, specifically my lungs.
When my lungs started to fail this fall I felt betrayed. I felt like some convenant between the big man and I had been broken.
How dare he do that to me on top of everything else. I felt abandoned spiritually.
I've held my beliefs close during my illness.
I know I am not perfect, but I am striving to be. I've strayed and come back again. I've never been left desperately ill without a Priest to allow me to confess and give me my last rights.
These sacraments or gifts are given to people who have been dedicated to the rosary.
I've prayed the rosary since high school seeking divine protection.
I feel it does protect me. I think it still does today.
Unfortunately, what it protects me against has changed. I'm no longer kept safe while I do nursing duties.
I'm given a Priest in case I die so I can end up in heaven where I won't suffer like I do now.
I know there is something better than here.
This has been a solid comfort, except during this past fall.
Without God as my backing, I lost my voice.
I'm happy I've been able to find it again.
With the steroids, I've begun to attend church on Sundays with both Lexi and Xander. I do under the guise that God will protect me while I'm doing his work.
My mind is finally beginning to clear. I'm getting organized again.
Scatter brained doesn't begin to describe chemo brain. I could start all sorts of projects but never finish anything.
Thank goodness I'm getting my brain back.
Of all the things I've lost, I miss my mind the most.
The steroids has given me one huge anxiety disorder. Everything is go, go go and and it has to be done now or five minutes ago.
I've cleaned or organized my whole house.
I'm moving on to finishing my half completed art projects. I'm perfecting my book and adding the multimedia dimensions.
All my paintings in the basement will be finished. I'm painting again and doing welcome signs. I taught myself to make jewlery immediately prior to therapy this fall, and now I'm finally able to use the materials.
I sold my first pair of earrings for $30!
I'm feeling industrious again.
What I'll do with all this stuff, I have no idea.
It's been a back of the brain dream of mine to start a little online store through ETSY or Ebay where patients can sell the handmade goods they make.
It is devastating to be diagnosed with cancer, but alongside this loss comes the loss of employment roles and financial freedom.
It would be fabulous if there was a site where patients could sell what they make while ill.
So many people I know have turned to art as an outlet.
They create hand made cards or take photographs because their view of the world has changed through their illness and they want to share that perspective with the world. They write books or create jewlery.
How fabulous would it be if they all had a place to sell it?
Just an idea.
And FYI- there would be pictures of all the cool stuff I'm doing, but I'm experiencing technical difficulties. Hopefully I'll be all connected again soon.

1 comment:

Anonymous said...

If you want to read something really profound about suffering, try reading Pope John Paul II's Letter on the Meaning of Human Suffering. I think you will find it very consoling if you can get through it...I'm still working on it myself.