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, November 2, 2008
The Sky is Falling
Remember, I said I could convince people the sky is falling? Well, unfortunately, that day is today. Apparently some American astronaut threw toxic ammonia out his window and into space. Portions, up to 40 lbs., will begin raining down somewhere this afternoon or evening.
Need confirmation, check out AOL.com
Don’t worry that the world is ending, remember, it’s all ready tomorrow in Australia.
But whose bright idea was this? I wouldn’t even allow my passengers to litter out of my car window.
I thought my thinning hair was a problem. I’ve been a little preoccupied with the fact that my hair is going, and again, those closest to me are refusing to shave it.
They say, if I could just hold on to it a couple more days, maybe it won’t fall out.
This is why I have kept my hair on my head for so long. Unfortunately, it’s thinning severely. I can’t touch it without clumps coming out. This means I try to wash it as little as possible.
I don’t brush it, but I never really have. That’s what I have fingers for. I don’t remember the last time I owned a hair brush.
It hurts a little, it tingles, it’s uncomfortable. I can FEEL my hair shedding and it’s making a mess.
I think bald spots are worse than entirely bald heads. My bald head is beautiful.
I tell myself I can rock the look. I have the “facial structure” or the “face to handle it” as I’m told.
Unfortunately, It is also a pretty clear indication to everyone who sees me that I have cancer. There is no denying the sight of a bald woman, even with her “interesting” features.
My family is refusing to assist me in my head shaving, and they are the ones who are required to look at me. I’ve gone months not looking in the mirror before (Jan. 2007-March 2007).
I don’t have to see me if I don’t want to, but I’m afraid I might have to repeat last time.
Last time, Andrea shaved my head with an electric razor, but patches grew back. I wouldn’t put the BIC to my head by myself, and neither would anybody else.
I was a determined woman. I wanted that hair gone. It was a severe all or nothing case, so I took the nair to it.
I don’t want to have to do this again. I have a list of friends who will probably be willing to assist me.
I need to feel as comfortable as possible. I think all women should feel that they look exactly how a woman should look.
My body wants to kill my hair. I’m going to listen to its cues. Ill let it win this battle so I can take the war.
As far as other problems, I decided instead of popping narcotics for this migraine that’s been plaguing me, I should try something that, maybe, was an anti-migraine medication.
I thought my headache was in the neupogen. Then I thought the problem may be in the velcade. Then I always tell myself it’s stress.
No, I have a terrible migraine that’s lasted almost a month, probably from the hormones I was forced into taking.
I’ve stopped my norethedone, which was originally prescribed for bleeding from fibroids (clusters of non-cancerous cells in the uterus) when my platalets were low. My platalets are now fine.
I also had a luprone shot. If this is the problem, and I suspect it maybe, my headache is set to go away about Nov. 7. I can handle that.
I did call my specialist to actually ask that I could do all this, and SURPRISE, he answers his pager on the weekends!
MY SPECIFIC DOCTOR!
He says it’s a Dana Farber thing, and that the specialists agree to answer their pages when they’re in town.
Bad news for the doctors, good news for me.
I didn’t believe it when I was talking to the operator asking for the bone marrow specialist on call. She told me they always page the patients personal doctor, the doc on call will get called if they can’t get ahold of him.
I thought she was lying and stalking my poor doctor on his weekend off, but no its true. Amazing.
I also got permission to take TYLENOL!! Ive had a low grade fever for forever. It doesn’t appear to indicate anything is wrong, except it is giving me chills and aches. I’m lethargic and grouchy. I told him I’d never wanted Tylenol or motrin so much in my life, and he gave it up.
So, try not to let the sky fall on you today. I’ll be going about my business as usual.