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, October 4, 2008

I Want Out of My Life

I want out of my life. I’m going to trade it in for a better model. This was not how it was supposed to go. Somebody, somewhere, must have made a big mistake.
I’m trying to be cool. I’m trying to remain calm, but if that damn alarm goes off one more time, I think I may hurl it out the window.
I’m not permitted to program the pumps. It’s not my license. I don’t have a license anymore. I have not worked in over two years. I have to push silence and call the nurse. I’m a professional cancer patient, not a nurse.
I have a nurse in her twenties. She’s the one with the license, with the job, and her whole future ahead of her.
I’ve never been jealous before. I have always had what I wanted, and if I didn’t have it, I knew I could get it. Now, I have to watch everybody else live, lives I may have had.
I won’t be working as a nurse for over three years by the time I heal. Everything I worked so hard for will be gone. All the knowledge I attained.
I’ve never spent more than three years attempting to accomplish anything. I graduated from high school in three years. I graduated from college in three years. I have a short attention span. I always have a plan for something more. Now everything is on pause.
This wasn’t what I saw when I talked about what I would be doing when I grew up. This wasn’t how I envisioned my twenties.
I call a “redo.” I’m questioning my life. I’m questioning all the decisions I’ve made.
I don’t even know what I want out of life. I have never been in this place before. I’ve always known exactly what I wanted. I knew exactly where I was going. I have never had trouble accomplishing anything I put my mind to.
Now I’m on lock in an 18’x15’ room, and no matter how hard I try, I can’t send my disease into remission with my mind. I can’t make my life disappear. I can’t change my situation.
I don’t feel blessed today. I feel screwed. I feel lost.
I try to stay positive, but underneath the surface, I’m scared I’ll lose everything. I’m scared I’ll lose my functionality, a fate worse than death. I try not to think about the possibilities of lung or kidney failure. I try not to think about any possibility that will keep me dependent and tied to a machine.
I still wonder where I will draw the line. I wonder how far my treatment can go before I call “uncle” and head home.
I hope I never have to make this choice. I’ve always been an all or nothing type of girl. If I’m going to do something, I’m going to do it right, go head first, and full throttle.
Everybody keeps telling me I don’t have to make any decisions now. I don’t have to think about this, and they’re right. I’m going to sleep this feeling off. I’m going to let time tell.

3 comments:

eileen KSC said...

Hi Hillary,
I am reading your blog daily, but haven't logged in to tell you that. You are in the best place for your treatment, and need to continue trusting the professionals while you use all of your energy to fight this monster. Your message about living has had more of an impact on many people's lives that you will never know about. I have friends that are smelling more roses, spending more time with friends and taking a look at their priorities. Today, instead of going to the dump and mowing the lawn, I took a road trip through the Berkshires to visit a few quilt shops in Western Mass. The ride was beautiful, I stopped at several 'lookout spots' to view the scenery. mountains, foliage and how the clouds left shadows on some of the hills, but the next valley would be illuminated. Might not sound like much, but actually it is. I can always go to the dump another day, and the lawn and leaves aren't going anywhere. Take care and stay strong.

Anonymous said...

Hello, Hillary!
Thanks for all you are sharing. I think of you and send positive energy often...you are a natural born star of the blogworld!! The music you selected is really nice to hear. You have created an experience of your energy with sight, sound and print and that's going out into the universe, multiplying, and looping back.

I've had a couple weeks of changed perspective, partly due to your sudden, shingles-induced, change of plans.I think I was in shock....and I got a sympathetic rash. I did things in some different way. I was more tuned in to hearing what people were sharing and I believe they shared more. It was about being right where I was supposed to be, I think.
I have been collecting gently- used clothing for families preparing to keep warm in the cooler season. I know you love clothes and I do too. It was something I could do and feel close to you....while still doing my job....I sorted all that was in my car, my living room, and my office...it felt like I was working in a walk-in closet...cozy, with new surprises every day!
I transferred bundles of clothing from caring families to the homes of at least ten new families. Since school started, at least thirty people have enjoyed some relief and confidence because they were comfortably,attractively dressed.
I'm looking forward to seeing your wardrobe choices over the coming days....watching for some of those pretty oriental pants...and the bond they represent.
You have just inspired my first blog entry ever! How's that for making a difference in the world?
You and your current experience keeps teaching me...thanks.
Love, Pauline

Unknown said...

Honest. I sure do see how you would feel all of that. It is rich that sleep does, sometimes, help move us beyond the really bad moments. I cannot possibly say anything here except...I hear that!