Dear
Readers,
When my
sister was dying of Cleaved Cell Lymphocytic Leukemia, every night I told her I
loved her, because there was no certainty that she would be alive the next
morning when I awoke.
Each
day she lived was not only a milestone, but another day closer to the eventual
cure that we all knew was coming. But the eventual cure did not come fast
enough for Carol, and despite a bone marrow transplant, the disease had taken
too much and left too little for my sister to survive.
Ten
years have come and gone since my sister lost her hard fought battle with cancer.
Not one day goes by, that I don’t take the time to pause, to recall and to
embrace the memories of the joy that my sister brought into my life.
As
children, we fought. As adults, we talked, we laughed and we loved each other.
Carol was a waitress and the resort she worked at closed late at night. Each
morning I counted the minutes down to nine a.m. at which point I could call her
or she’d call me. Over coffee we would catch up, talk about the day ahead, her
kids, my horses or a new recipe. For a time we had the bread machine war, where
we exchanged the latest and most outrageous bread ingredient we could or would use
to make what we hoped would be a remarkable loaf of bread. My favorite? Red bell
pepper bread. Yum.
I can
still picture her settled into her small Bergere chair, the springs shot and
the webbing lax, with a cup of coffee in one hand and a cookbook open in her
lap. Oregon’s snow covered Three Sisters Mountains silhouetted in the glass panes
of the three-piece doors that opened onto the deck behind her.
The sun
would find Carol’s blond curls through the glass and set a golden halo to glow
around her head. With her yellow canary singing in the background, she would consider
and discard recipes until one struck her fancy, something new, something
delicious. Carol’s kitchen always smelled wonderful.
My
sister fought hard for life, she never gave up, and she would have tried
anything to see her grandchildren grow to adulthood. Right up to the moments
after they unplugged the machines, Carol had steadfastly believed she was going
to beat the disease.
Carol
looked into her husband’s eyes, and he told her how pretty she was as he combed
her hair and ran a touch of lipstick across her lips. Slowly her beautiful
cornflower blue eyes closed for the last time and Carol left us.
I write
this as yet another report comes out of a legislator’s attempt to get a bill passed
that would allow terminal patients, who have not responded to other treatments,
access to experimental drugs—promising
drugs which are undergoing clinical trials and awaiting final FDA approval.
Why
not? As long as there is a confirmed consent form from the patient. They’re
terminal, what is more final than that diagnosis?
They
say, “It would give false hope.”
I say, “They
are terminal, what hope?”
They
say, “Using these drugs could shorten their life.”
I say, “And…?”
I know
it is a very complicated subject. I get it. But I also say, when there is
nothing left to try and hope is exhausted, let the terminally ill, where
capable, make their own choices about what is right for them.
Two
brothers with the same terminal disease, one in a clinical trial taking a
experimental drug and who is now healthy. The other? Still dying. How can you
not give him the drug? What must those people in that family be going through?
I find it horrifying to contemplate.
My
sister wouldn’t have wanted a freshman congressman, from the confines of Capitol
Hill, deciding what her treatment of choice would be. Choice, isn’t that part
of what made this country great?
HR4475
entitled “Expanded Access to Unapproved Therapies and Diagnostics,” is as
everything our government addresses, over complicated and is intended to be
added as an amendment to an already over complicated “Food, Drug and Cosmetics
Act.”
I don’t
have the answers. When I try to read these bills and acts, it makes my head
itch. But what I do know, and it isn’t complicated, one brother lives while
another dies for want of an unapproved experimental drug. That is not right.
Take
care,
Shelley
Riley author of Casual Lies – A Triple Crown Adventure
www.shelleyriley.com
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