my name is Emily Owings and I had aplastic anemia.
I describe it as leukemia without the cancer.
Itís like the great nothing in the ìneverending story.î
it takes over your bone marrow I lost the ability to make red cells no oxygen to my
brain, I got foggy, couldnít speak coherently.
I went to my family physician here in Sioux City and he said, ìI think you have leukemia.
You need to go to the hospital.î I said, ìOK, Iíll I get off work tomorrow at 4.î
He said, ìOh, no, youíre going to the emergency room right now or checking into the hospital
first thing in the morning.î
I think finally knowing is better than not knowing.
I had a donor.
I was fortunate in that my sister was my donor.
my sister basically gave blood.
And they determined that our white cells were a match.
When she went in, she went under general anesthesia.
They took a liter of fluid from her iliac crest.
They spun that like they do with a plasma donation.
They sucked off the bone marrow cells.
Meanwhile I was receiving a lot of chemo.
Which kills fast growing cells.
So my bone marrow was wiped out; all the way; more than what my body was doing on its own.
So I was just killed basically [laughs].
They froze her cells and after about a week of chemo, they injected it.
Thereís my scar.
I had whatís called a pick line.
Which is basically a direct line to my heart.
They injected her cells and those little bone marrow cells float around and if youíre lucky
they take up residence and start reproducing.
And as they reproduce you have new bone marrow.
Bone marrow produces blood.
So I started being able to clot and heal and get oxygen to my body again.
I knew it would be burdensome.
I didnít want them to be so concerned with me that they forgot about themselves.
my grandma and my mother my father, my sisters, my brother, my husband all rotated.
Itís really draining to see a loved one suffering or cranky.
The drugs do things to you psychologically.
Normally, you wouldnít snap at a loved one.
But it is painful, and the drugs do affect your brain.
rotate caregivers, to take a break when you need it.
Please doÖ because you do need it.
I think my friend Veronica cameÖ// She came in and brought puzzle books and sat with me
for an hour.
Didnít think anything of it; it was a matter of course.
She just came and sat there for as long as I was awake.
That was awesome and spoke volumes about her character.
I know visiting people in the hospital is not fun.
But that wasÖ very important.
it took several weeks before I had energy to get out of bed at all.
The side effects of chemo; they give you a list and it was as if subconsciously I was
checking them off.
Nausea, check ñ got that.
It was pretty horrifying.
I had an IV tree which give me fluids and medicine I needed.
It started to embody the disease.
Like, ìif I could just get rid of this stinking IV pole, then Iíll be better.î So just forcing
yourself to eat and swallow so that you can take the pills by mouth.
That was my goal.
And the IV pole was this demon that I could fight and focus on.
That was important to me as a stubborn person to have something to rail against and fight
against.
another thing I railed against was the dehumanizing aspect of having a disease and feeling like
you ARE aplastic anemia.
You ARE this chemo patient.
That was debilitating.
just getting women together to talk about the loss of sex drive, or youíve got adema
and your face is swollen.
Or you look like a hollow anorexic; this bald person walking through.
For men itís different.
You see a bald man and itís just ìOh, poor bald guy lost his hair.î But for women, itís
ìsheís sick.î And itís strange but people avoid looking at you.
It seems like a small thing, but youíll look and see them look away.
Itís disheartening; itís dehumanizing to be this person in a mask with no hair.
People donít know how to relate.
For the general population, make eye contact.
Youíre not going to catch whatever they have just by looking at them.
You donít have to giggle and say everythingís great.
But just to say hi, I see you and I recognize you as a human being.
all psychology classes talk about this looking glass self where our validity as a human being
comes from other people recognizing us as humans.
So just getting together with other women to grieve; and it is grieving for the loss
of how you look, that was really important.
it helped me acknowledge that itís not just a vanity, itís part of who we are as people.
It gave me permission to go try on scarves and wigs.
I think Iím more grateful every day.
But I stand back and think about it every once in a while.
Iím more forgiving of myself ñ less of a perfectionist maybe.
I donít have to vacuum the curtains every week (laughs) I donít have to look at the
5 extra pounds Iím carrying and be devastated [laugh] itís more than 5 according to my
dr.
[laugh] but I donít care as much.
Iím willing to give myself more time to do what I need to do.
on Jan 21st I had a secondary b-day party not only because I like parties but because
so many people were supportive and at the time I wasnít able to thank them.
But I was finally able to read them and cry right before that re-birthday party.
It was awesome.
take it slow.
Find something that calms you.
Donít expect youíll be studying a new language while youíre recuperating.
Just recover.
You donít have to do anything else.
It can all wait.
Donít worry about money while youíre there.
That was a big obstacle for me.
Donít worry about it.
It will come