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, November 15, 2008

A Day in the Life

I think someone should make an alarm clock for parents that sounds like a kid throwing up.
All us parents would fly out of bed in the morning, hollering, “Whoa, I’m out. I’m up. Don’t get it on me.”
It may be as effective as the alarm for college students that goes off and rolls around the room. You can’t hit snooze since you physically have to get up and chase the bugger around.
My son threw up in the middle of the night the other night. He’s got a stomach virus, complete with the works.
Don’t think that the cancer card gets me out of being a mother. I’d like to follow the guidelines and not care for my sick child. I just don’t have a crystal ball to predict he’ll be hurling on me in the middle of the night after he sneaks into my bed.
Unfortunately, I am a cancer patient.
At night, I’m a very drugged up cancer patient, not so much as I used to be, but I wanted to throw up too that night. My night time cocktail included 5mg of Ambien, 1 mg of Ativan, and my usual 15 mg of narcotics.
Yes, I did still crawl out of bed and get X cleaned. I put him in the bath. Sat beside him, etc.,etc., etc.
If you’re a parent you know how this works.
Luckily, J saw I was clearly not awake this time, and changed the sheets.
I ditched my son and sprawled out in our newly made, vomit-free bed, signaling J would be taking over. I understand he has to work. He needs to understand that sickness will make me more miserable and possibly kill me.
Speaking of misery, let’s talk about how I feel in the morning.
I wake up at 6:30. I wake up sweaty and feeling like I was running in my sleep.
I get out of bed when my man gets out of the shower.
I stand up and think “ffffuuuuuuuuuucccccckkkkkkk.”
I hurt so bad. It starts at my feet. Pins and needles, shooting pains, joint pain. I shake it out and walk myself to the bathroom. Thinking “I really should just crawl back into bed for the rest of my life.”
By the time I get to the bathroom, I feel nauseas. Then, since I feel sick, I start getting hot flashes. I start getting sweats.
Yes, I am hot, thank you, it just comes in flashes now.
I sit on the toilet and grab for my long acting oxycodone. I try to get the top off but it is HARD when my hands are shaking.
Those caps are difficult anyway, especially for someone who can’t feel their hands.
I hope it kicks in before my son wakes up so he will never have to know what I go through to give him a “normal” morning.
After I convince myself I can deal with these problems, I run out to make my coffee and pack lunch.
This is when my stomach starts cramping. I have to stop in my tracks and hug my stomach. I grimace, just about cry, and I try to walk to the bathroom.
We’ll call this a “Code Brown,” which is made that much worse since it’s accompanied by the feeling I need to throw up and have the sweats.
If I managed to get dressed, I’m all ready getting rid of my clothes, fanning myself, and thinking about putting my head in the garbage can since my ass is on the can.
This is so terrible and so embarrassing to tell people. I promised myself I would tell you anyway.
Once this is done, I’ll take another 10mg fast acting oxycodone, since I wake up every morning and tell myself I’m really not suffering that much, and I shouldn’t take the amount of narcotics I do.
I can’t shake this mental plague. I hate asking for pain control. It makes me feel weak.
I do have legitimate pain issues. I always tell myself I don’t need what I take.
Except, any failure to take what I need, and I would be back in bed, curled in a ball for the entire day. I think the benefits outweigh the risks.
I need to move.
By this time Xander has woken up and I take care of him, exactly like a GOOD mom should.
By the time I get back home at 9am, I crawl back into bed with my computer. On good days, which are most days recently, with a little more pain killers, I exercise. I’ll talk on the phone. I’ll email. I’ll write. I’ll read.
What I experience every single morning for just about every single day for almost three years now would send most people back into bed, curled up in the fetal position.
I've definately had people complain to ME about how sick they are.
Last time, I’d allow the problems to send me back to bed. Now, I accept that I need to get out of bed and be as productive as possible.
Exercise and activity speed up the healing process. I manage to keep a strong front. Most people, even with all my confessionals, don’t realize how much I suffer.
Now that I write this, I realize nobody knows what I go through each morning to put on my tough face. Now you do.

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