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, October 5, 2008

My Room



I’m happy to hear people are beginning to understand my blog. I’d love feedback on how user-friendly this is. I’ve posted answers to some frequently asked questions to the right in the sidebar. I hope my blog is easier to figure out than I am or you’re going to be sitting here a while.
I always thought I was pretty simple and straight-forward as far as a woman goes. I certainly have my moments, but generally I know what I want and I’ll ask for it. I wish life could be the same.
I had a bit of a rough night last night. I couldn’t sleep. I’m still becoming accustomed to the line in my chest and the pain accompanying it. Then my blood pressure dropped to 70/50 (normal is 120/80), and the nurse became concerned.
I told her there was no need to be concerned. This is what happens at night. I sat up for her. I walked around the room. I did not feel like I was going to pass out. I wasn’t sweating. This is how my body behaves.
I am concerned, however, that I’m referred to as “the girl in room 56” or the “BMT down the hall.” I want to be seen as a human being with a life outside of my cancer. I understand the need for professional boundaries in a nurse patient relationship. I’m not looking for a new set of best friends while I’m an in-patient, but these people are the crux of my social interaction. I am looking for some evidence that I’m seen as human and not just a disease. In all the time I’ve spent in hospitals, I’ve never experienced this level of detachment between my caregivers and I.
With all due respect, it’s also, only, my third day here, and my day nurse is fabulous. She treats me relatively effortlessly. She gives me the schedule for the day each morning when she brings in my “cocktail” of Vit. E, folic acid, metopropolol, lexapro, multivitamin, acyclovir, and whatever else I’m getting.
She hangs the calcium I’m getting today, and the magnesium and potassium I’ll be getting daily for the remainder of my stay.
I haven’t really been paying attention to what I’m taking. I know, that is not me, not the Hillary most people know, but I’ve finally humbled myself. I don’t need to know. Sometimes, I wonder if I know too much.
Maybe the detachment is only my imagination because everybody who enters the room looks like a masked bandit. I do get to focus on the eyes of my caregivers, and I suppose that’s all I need. Maybe I’m projecting my own feelings of detachment and isolation.
Either way, I’m coming to terms with my surroundings and the roller coaster that is my life. I’m thinking of ways I can enjoy myself. I’m getting creative. I’m going back to the basics. There are not many things you can do within a small box of a room.
I’m going to turn on music videos and try to do the moves like I did when I was ten, and when I realize I can’t, I’m just going to jump around. I’m going to have movie marathons with my sister and laugh until I cry. I’ll play with my video camera and make silly videos for you to see, and if I don’t have the energy, I’ll take my camera so you can view my world, however small, through my eyes.
This will be okay.

3 comments:

Unknown said...

You are right on. I hope that you realize for all of us out here following your life you are not the BMT! You are Hillary!

I hope some people in the medical "caring" profession read this. Detachment is an excuse for not being present in all the moments. Wish I could be there and not sure how much it helps for you to know someone like me is here.
But if I was going to do a movie marathon...I have a personal favorite. Madame X, it was a movie I watched with my girl friend in high school one day skipping school. We got caught..that made the day and the movie memorable. Oh and I am old so the movie is really old cause I think it was old then! Like your Jason Song.

nmorel said...

I enjoy reading your blog each day, it is a great mixture of humor and reality. Barry and I also enjoy keeping updated on your progress and your blog is the easiest connection that we have. It is user friendly, and I've never had any trouble finding my way around. :)

Ava also loves your blog, she enjoys watching the videos, and was just a moment ago dancing to the music! We all hope that you have a good day, stay strong, we think about you often.

~Nicole

Frank said...

Hill,

So good to read your Blog each day ... can't believe you are turning this old war horse into a New Millennium kind of guy ... well at least Blog wise that is.

I do like your spunk ... & appreciate the opportunity to stay up to date with what is going on. Did try to call Jon & X about coming up to VT to terrorize frogs this afternoon, but didn't get an answer. Maybe next week.

Take care kiddo ...

PS: I would wager a lot of $, that it won't take long for the medical pros you are dealing with, to catch on to your humanity. I don't know anyone who could resist that smile nor the feisty, sassy sense of humor!!