Peipins “The Day I Discovered
My ATM Gene
After
receiving a breast cancer diagnosis, I recently got a detailed
genetic test from the company, Myriad, which gave me a surprising result. I discovered that I had a homozygous variant
of the ATM gene. What did this
mean? The interpretation given was that
it had uncertain clinical significance which meant nobody really knew. Not surprising since this is what happens
when technology goes beyond our ability to understand where it has taken us.
Armed
with a brightly colored document, I sat down with my oncology nurse. She asked, “Were your parents related?” No. Both my mother and father were from
Latgale, the rural province of Latvia that is somewhat isolated from the rest
of the country. My father grew up in Siberia where Catholics often immigrated
to in the hopes of owning land they weren’t permitted to do in their own
country. There was no connection between them. In fact, my parents only met in
Buffalo, New York, where they ended up as refugees after the Second World
War.
ATM
stands for Ataxia-telangiectasia, a rare illness that
affects the neurological system causing difficulty in movement and severe
disability usually appearing in early childhood. My nurse got on the phone with Myriad to
speak to a genetic counselor. I heard
her answer to the question I could imagine, “Cognitive problems? My patient is a university professor.” At least I was before all the cancer
treatments.
No cognitive dysfunction but I’ve always had a propensity
for magical thinking. I have a deep
survival instinct but not much of a sense of how to live practically. Could there be a connection to this genetic
anomaly? Could this ATM gene variant have caused my wanderlust, my lack of
establishing a home? I did my best when I lived in Spain where the details of
life were taken care of. Health care was
universal and my monthly salary covered my expenses which the bank paid
automatically at no extra cost. I even
received a double pay at vacation time.
Back in the United States, I try my best to control all of my limited
income and the ever increasing expenses caused by an inability to go back to my
profession.
So where has this magical thinking taken me? To a deep quandary. Who can I believe in this tangled world of
cancer treatments? Oncologists, cancer
survivor networks, big pharma, and the disgruntled suffering patients you meet
every day at the chemo labs all have different takes on what works. Bouncing on
a trampoline, putting baking soda in your water, and fasting were all “cures” I
heard discussed in the chemo lab. The
lab itself offered a refrigerator loaded with soft drinks and baskets of salty
snacks. At least those items I could discount yet I have no idea what would
help a patient survive though I read through e-mails from “The Truth about
Cancer” and blogs from the few patients who have been cured.
I want to believe in radical remission, the possibility
of total healing that conventional medicine rarely provides. Or I can check the statistics and think, yes,
I can survive five years with barely tolerable side effects from the drugs that
keep me going but offer no real guarantees of a cure.
For many cancer patients their most trusted confidant is
often their oncologist. This surprises
me. I thought the days when the doctor
took on a Godlike status and there was no room for doubt were long over. After all, these days, we need to be doctors
ourselves doing as much research as possible through the mess of Internet fake
news and professional articles. My own oncologist commented to me, “You’re
always negotiating.” In my mind, it’s
what’s keeping me alive. Is that magical
thinking or the only sane way to progress in this medical world?
My perspective on doctors is the opposite of
trusted confidant. There is a conflict
of interest with many health care professionals locked into following industry
established protocols and recommendations from pharmaceutical companies promoting
their latest drugs. Many of these drugs
give a negligible increase in life expectancy and may be variations on the
drugs already out there. Many of those
drugs undoubtedly increased life expectancy.
There
is also the question if a billion dollar cancer industry is even interested in
curing the cancers out there. Breast cancer turned into a chronic ailment is a
huge financial boon. Five to ten years
on estrogen suppresents for estrogen positive cancers racks up profits. Not to mention the cost of chemotherapy
itself. Neulasta injected to help mitigate the effects of chemotherapy is eight
thousand dollars a pop!
I’m sure there are many caring doctors out
there but many patients blindly follow any advice they gave. The hope that the next treatment will work
can lead to endless suffering and a deterioration of the quality of life. It’s heartbreaking to see a young cancer
sufferer saying “I’ll beat this,” and treatment after treatment takes away the
possibility to spend quality time with her family. A battleground is not the right metaphor for
cancer survival. Cancer cells are in all
of our bodies and killing them off along with healthy cells may not be the best
way to go.
What
is the answer? Fear is the biggest
factor in making decisions about medical treatments. If I don’t follow the doctor and take this
medication will I die? Do I have to
suffer piercing headaches, eye pain, depression, and joint pain that makes me
feel a million years old because of taking an aromatase inhibitor? Is there a better solution? What could it be? Is there any chance researchers are working
on that or is it simply not profitable to do so?
In
my magical thinking universe I would take the thousands of dollars spent on
chemotherapy, surgery, and medication, and take a long trip. I’d visit a Vedic astrologer in India, meditate in a Buddhist temple in Thailand, and
lie on a beach in Crete soaking up the hot sun listening to the waves carry
tiny stone pebbles. Instead, I sit at
the computer eking out an almost minimum wage at a testing job and wondering if
this is how the last years of my life will be spent in this worry and doubt.
