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."
Sunday, October 5, 2008
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.