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June 23, 2001
It is not enough that I have slept on hard
mats, hurt my hips lifting weights so I could lift my son, gained weight
from endless vigils over him, learned to live on frozen (high salt) food,
cafeteria food (high fat) and the occasional coffee, gained 30 pounds,
lost my waist (again), learned to sleep fast and whenever possible, and
staggered through the hellish ordeal of the first 10 months of cancer
treatments. My eyes look like I was punched in the face.
I have stopped wearing body suits and nylons,
even heels, dress in pant suits I swore I'd never succumb to, scuff around
in flats and haul a wheeled carry-on bag where ever I go, packed with
emergency Mommy-supplies, should I suddenly be back at that routine again.
I leave work early and arrive late, working
at home at least 50% of the time. I grocery-shop when I must, if then.
My life has, in these 10 months, turned upside
down.
Jettison neglected. Hellsfire unfound. Crossed
Sabres somewhere on the shelves. And Amelia still dancing in the dust.
I have weeks when I don't want to keep my
on-line journal up - which prompts emails to see if I am all right. I'm
probably not. It's called depression (mild) and exhaustion(severe).
Instead of Sears and Target and K-Mart, I
shop QVC.
I get to the gym catch as catch can. (Now
that I connected the 300-lbs leg lifts with the hip pain, I will lighten
up.)
I have days when I want to stay in bed (did
once) and curl up and read until my eyes blur. Which they do. They are
old.
I have stacks of books. Although it is increasingly
hard to find Regency Romances. I have to get down on my hands and knees
and crawl on the floor of Barnes & Noble. Walden's is not much better.
Borders is quite simply, "Forget it!" Walk in, walk out.
Amazon.com allowed me to get a whole bunch
of Regencies written in the early-mid 1900s (1836, etc). One thing about
Amazon, I don't have to worry if I will be able to get back up from the
floor.
I have mysteries. P.D.James. Anne Perry. Martha
Grimes. Scarpetta. Tony Hillerman. And even Parker. I love Spencer novels.
I loved the show that ran forever. I like Hawk.
I read when I can't sleep, in waiting rooms,
sitting by his bedside during treatment, in the recovery room waiting
room. I am never without a novel in my purse. Maybe two.
My kitchen floor never stays clean. I sleep
with laundry. I am short about 20 hangers and three clothing racks.
My son is neutropinic which means Clorox everything
this weekend. Movies only if I drape the seats and go off-rush hours.
We carry anti-bacterial and Clorox wipes. We go on Sunday mornings early.
(Shrek.) Or late Thursday. (Tomb Raider)
It is hot now (about 94 today) and I hate
it. The house reaches 80 by 4PM.
It makes me crabby and cross.
Driving to and from work becomes even more
dreadful in the heat. The steering wheel so hot I can't hold it, the seat
hot enough to leave you sweaty and sticky by the time you get home. My
feet swell up in the heat as do my hands, no shoes fit and my feet hurt.
I spend evenings in a nightgown or shorties and barefoot. My son complains
I don't wear a bra. Then he moons me.
I spend evenings catching up with work. Typing
until my neck hurts (damn trifocals) and my wrists ache. I have a headache.
16 hour days are normal. But my project, in spite of the chaos, remains
on schedule. If barely.
My days revolve around a chemo schedule of
blood tests and hospital visits and surprise situations.
They had one for me this week.
I am now trained to give my son injections.
Painful ones into his muscles. Daily.
I had avoided all that right up to now.
I have been briefed, handed a chart, watched
a training tape, and walked through with a nurse.
I hip-stabbed him in the hospital.
I just did it again tonight.
My stomach turns over.
It took several minutes to calm down the first
time.
It took several minutes to calm down tonight.
But I am fine while doing it - it's afterward.
You know it hurts him. He grits his teeth.
He bit down on a Starburst pak.
So how can a Mother do this?
He hates needles so he won't do it for himself.
I do it because it will bring his counts up.
So he won't be neutropinic for long. So he won't miss treatments. So he
stays in remission.
Even though I know it hurts him.
The alternative is so much worse.
He does hug me for a few minutes afterward
- so we both can recover.
Luckily, this is a temporary thing. Maybe
4-10 days once every 4-6 weeks.
Good.
Because I couldn't face this if it were daily.
Well, I probably would because it would be necessary. We never know our
own strength, do we? Mothers certainly do not.
But I'd rather not keep this up!
These lovely little vials I keep in the refrigerator
are tiny little things.
A 1.6 ml dose resides in each.
The cost of all this? - $300 each. In fact,
$3,000 for 10 days.
It cost me $14.00.
I had to pay for syringes. The insurance paid
for the vials and the needles.
Why I keep my project on schedule and type
far into the night.
Insurance.
P.S. It worked. I only had to give him five shots. He's on schedule for
chemo. Looking for a movie.
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