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."
Monday, October 6, 2008
Here I go Again
It’s time. I knew the time was coming. I started thinking crazy thoughts like, “well, maybe I won’t get that sick this time” and “maybe this will be easier. I’ll recover faster. I won’t experience all those harsh side effects. I’ll be transported back home quickly. Dr. Meehan can do most of my post-transplant care. There’s no need to be in Boston for such a significant period, in a city I don’t know, if people I don’t know, in a hotel I’ve never seen before.” These are all crazy thoughts.
I feel nauseated. The feeling starts like vertigo. It feels like it’s in my head. My view of the world starts to change, then my I get this nagging feeling in my stomach. I try to lay really still. I put myself in fetal position and stare at the tv, hoping to be distracted, hoping if I don’t move the feeling will subside.
It doesn’t, and unless I’m medicated prior to moving, I’ll throw up. Then I’ll throw up again and again. Once the flood gates are open the water keeps coming.
I’ve arranged my room so I can complete most tasks from my bed. I’ve moved things so I can take minimum steps to meet my needs. If I feel like exercising, I can always take more. My electronics are in the top drawer of the night stand with my books and pen. The second drawer is for underwear and sox. The third drawer is empty, it’s not at arm’s length from my bed.
My computer is always on top of the side table, where I can grab it quickly and move it. The charger is also plugged in beside that.
I’m going to start to hurt. I’m going to want to move as little as possible, unless I’m inspired by dance party USA in my room, I’ll be in bed today.
My drawers with my clothes are in directly line with the bathroom. Eventually, inane tasks will be like climbing Mount Everest. My legs will feel like lad, my lungs won’t want to take a full breath, and my eyes will barely open.
I’m getting my K+, mag, fluids, fluderabine, busulfan, and a blood transfusion today. I’m a full blown chemo patient. The fluderabine has a great bright orange sticker stating that this drug is a “carcinogen,” and exposure should be limited.
I’m going to pour it directly into my heart.
I’m also getting my first transfusion of this round of the fight today. I’m sure it came imported especially from Tiahana. I’ve had so much blood mixed and matched over the years it takes a special breed to share blood with me.
Since it’s a Monday, and all the doctors have returned. I’ve seen the dental examiners. I then saw a PA who brought another woman who I have no idea who she does, but she appeared to be nice enough. She didn’t breach the look but don’t touch policy I generally have for strangers.
That’s the extent of my day so far. I thought this part could be avoided, but it’s coming. It’s starting today. I have to get worse before I get better. I’m going to keep my eyes on the prize. See my prizes above: my family. I’ll keep you updated.