Excerpts
from a presentation given at the ICCCPO/SIOP meeting in Amsterdam (Oct.5-7,
2000) by Juanne Nancarrow Clarke and Sophie Broere (who is a Dutch long term
survivor and read the part of the daughter). It is a mother/daughter dialogue
with alternating paragraphs.
It
was the summer of 1995. My
17-year-old daughter and I were spending this time in the city together. Lauren
wanted to get a lot of sunshine, relaxation and exercise.
Call
it by name:
cancer
leukemia
sick
diagnosed.
Things
didn't exactly turn out this way. The doctor on duty at the urgent care clinic
asked what was wrong with Lauren and she and I explained that she was
"really" tired all the time and pale.
I said that I wanted him to order a blood test in case she was anemic.
He said to me, "But you're pale, too.“ And I said, „Yes, but I
have lots of energy and endurance.“ Then he said,
„oh, okay" and ordered a blood test. Lauren did not have the
energy during this test to keep her head off her elbow on the desk. Here she sat
in a public office too tired to keep up the appearance of being well.
As
if labeled, named,
by speaking incessantly
it might be
overpowered, destroyed
regain my strength.
The
afternoon passed.
Words,
eventually
told Lauren what the doctor had said. Something was seriously wrong.
The doctor said I think it is serious.
I asked what he meant what could it be?
Leukemia or aplastic anemia. He
would make an appointment with an hematologist for as soon as possible and call
us back to let us know when it would be.
language
itself, numb
He
called back to say that the bone marrow aspiration was the next day.
For
a word does not
throw up every day at three,
cry as hair clumps in front,
believe that being held can save.
I
still really did not think that it was happening.
A
word does not cure.
I
continued to work at my desk.
(..)
That's
not how I remember it. When the doctor called Mom was helping me write out my
resume for applying for first-year university scholarships.
She was typing what I was dictating because I was too weak to sit up and
do it myself. I was lying at her
feet and I could hear her voice and see her tears appear.
I asked her what was wrong and she told me immediately.
We went to our living room and hugged on the couch, crying for a few
minutes.
(..)
Lauren
and I resolved that the doctor was wrong - she was only anemic.
I
was a vegetarian, maybe Grandma was right after all, maybe I wasn’t getting
enough iron.
He
was overreacting, I told myself. He
was looking for the worst. So I
made Lauren a bowl of spinach for lunch with a bunch of raisins for dessert. She
was anemic; these foods were supposed to be iron-rich and we were going to get
serious about treating it.
(…)
The
bone marrow aspiration was the test we were all waiting for, cloths and trays,
slides and tubes, and needles and bigger needles arrived, nurses and lab
technicians gathered around the bed, ready to run the bone marrow to the lab for
testing. Time stopped. It seemed
that everyone had stopped breathing until the doctor laid out her tools and
began to explain what was going on. The situation quickly became ritualized.
It
hurt it really hurt. I had tears in
my eyes, I was wincing
(…)
The
doctor then very quickly assured us that she had the "good" kind of
leukemia and that her prognosis for full recovery was 78-82 percent.
These
were great signs. All in all,
things couldn't have been better under the circumstances.
I
heard Lauren’s diagnosis. I don't remember feeling: instead I remember
planning. I remember thinking, okay
that's it, now what do we do? I hadn't eaten for a few days, but I wasn't
hungry. I didn't have clothing.
I had a full-time teaching position. None of this came to mind.
My concern was focused on the immediate tasks that lay ahead.
I
guess that is shock.
People
always ask me, How did you feel when you heard the news?
That
Lauren would not live never entered my mind at this point.
A
hardness
slowly swallows what's left.
I
was sure 'she was 100%'. She seemed
so healthy, except for the tiredness
I
cry out to stop it,
I fear that if I don't
something else might
and we had a course of action that taken step-by-step
(…)
But
really, we were still in a land of shock. While we were curious about the causes
of leukemia and the length and effectiveness of treatment, we were not really
yet concerned about the side effects, the long term effects or the after
effects. We were not looking ahead
in a realistic way. Time was
eclipsed yet interminable. Instead
we put our trust totally in the doctors, nurses, and hospital.
We believed that they knew best, had all the answers and the way to a
complete cure.
(…)
What
are the causes of leukemia?
We
wanted to understand what had happened to lead to this totally unexpected
diagnosis. We are as humans, used
to taking our worlds, our friendships, our families and bodies for granted.
Yet our common sense thinking is causal.
We learn to predict our lives through a myriad of smaller and larger
signs. Grey clouds often bring rain
or snow. Sudden severe sickness
disrupts „taken-for-grantedness“.
I
look back to the past to see if, after all, we might have predicted my illness.
(..)
I
became interested in understanding more about childhood cancers.
I wondered how common are they? What
are the causes thought to be?
(..)
The
proverbial question of "why me?“ did not seem to enter my mind.
For me it was always more about "why not me?“
(…)
And
so time passed.
We
went to the outpatient clinic at the large hospital for six months.
We
went to the clinic in town every week for two years.
And
then we were
at
the end.
The
end of treatment, as long as it was a distance in the future, was anticipated
with great delight and hope.
(…)
I
am still trying to make sense of what happened.
Most of the time it is distant. I
have come through cancer and now I am well.
But it is not that simple. I
forget now that I had cancer. I
forget the pain, the fear, the effort, the loneliness.
Recently I forgot to call to make an appointment to go to the hospital
for my regular blood work. Just
like that, what was once my world is no longer.
Chemotherapy, its impact on my immune system, and the fear of catching
something serious from someone are gone. There are small reminders: my need for
naps every day, my more easily bruised body, my thinner hair.
But these are minor things. I
feel well. I am eating more
healthily, exercising regularly, and trying to chose an activity level that does
not give me too much stress. Yet,
there are times when the enormity of what I have been through, over takes me.
Sometimes I am overcome with tears and grief.
I want two years of my life to mean something-I want every day to mean
something. Somehow I need to come
to a conclusion with this illness, but I think that this conclusion may still be
years and learnings away.
(..)
I
am back to work full-time. Life is
sort of back to normal. I usually
do not worry about Lauren’s health. If
she looks very pale, has the flu, or feels particularly tired, I get alarmed,
but I am usually able to put it out of my mind and to trust that she is better.
Although I live with uncertainty it is in the midst of optimism.
I
have gone through a lot and I am healthy. But,
I think, we all go through a lot
and we all need to be healthy.
I
am amazed at how normal life usually seems now–when we were in the thick of it
I couldn’t believe in or imagine a future when Lauren’s health, her
well-being, could ever again be taken for granted. But then, I guess, it
isn’t – quite.
(…)
And
now she is well.
Juanne
Nancarrow Clarke
Finding
Strength: A Mother and Daughter’s
Toronto:
Oxford University Press, 1999