OPINION
4A
THE DAILY ASTORIAN • FRIDAY, SEPTEMBER 30, 2016
Another October and I’m alive!
Disclaimer: I describe my own experience
and don’t profess to know what others in my
boat experience. However, my support group
experience tells me that many, many of us are
not pink-tutu-wearing, happy-go-lucky survi-
vors. Even so, I can only write of my own path.
W riter’s
N otebook
By LAURA SNYDER
For The Daily Astorian
CONTACT YOUR
LEGISLATORS
I. Imagine
OREGON LEGISLATORS
E
ven if you survive it (60-70 percent of
people do), you may be disigured —
permanently altered by treatment, a
body that’s yours but not really familiar any
more. You may suffer chronic pain from past
surgeries and radiation. You may have been
thrown abruptly into menopause (chemother-
apy does this, as does ovarian suppression, a
treatment for hormone positive breast cancer)
if you weren’t there yet. You
might ind your brain, which
used to seem pretty on the
ball, is sluggish now. Maybe
it’s harder now to concentrate
on reading or conversation.
Maybe your memory is much
more compromised than the normal middle
aged lapses. You might be one of the unlucky
few that lost her hair from treatment and never
got it back. Your energy level seems about
equal to someone decades older, and a crush-
ing fatigue has become the norm.
Imagine being in your 20s or 30s and losing
the option of having children, if that was some-
thing you wanted. Or that you’re a mother (or
father) of young children living in fear of being
dead before you can volunteer in their ele-
mentary classrooms. Imagine having assumed
you would meet your grown children’s future
spouses and their children, and now wonder.
Your life now has an unwelcome and
heightened anxiety that never goes away.
Every ache or pain, mild or extreme, could be
it, returned despite all the “right” things that
you and your caregivers and doctors did and
do for you.
All of the above? Welcome to the aftermath
of early stage breast cancer treatment.
Enter … Stage right (er, I mean Stage IV):
metastatic recurrence. You take your medi-
cines, you exercise and eat right, you try to
re-enter the workforce and put cancer behind
you. And yet, there it is one night — a lump in
the side of your neck.
II. Reality of Breast Cancer
I’m still alive, but I’m not a survivor. I call
myself a cancer patient.
I have metastatic breast cancer, also called
Stage IV breast cancer. This means the cancer
has spread outside the breasts to other organs
in my body. For me these have included liver,
lungs, lymphatic system, and brain.
I am on my third line of treatment in a little
over two years of living with metastatic can-
cer. I’ve had whole brain radiation and two
sessions of gamma knife radiation to my brain,
during which I wore a metal cage on my head
screwed into my skull in four places (here’s a
self- portrait I drew).
This is a part of breast cancer that is neither
pretty nor pink, and certainly not “easy.”
I’m one of the lucky ones right now. My
current treatment has worked wonders with the
biology of my particular cancer and I’m happy
to report that I’m currently N.E.D. This means
No Evidence of Disease! I get a break from the
radiation oncology clinic and the anxiety of
inding another treatment. I’ll take it, and live
my life for as long as it lasts.
The median survival time with this disease
is two to three years. Sometimes I wonder how
it’s possible to live with this knowledge and do
things that suggest a future — trip planning,
exercising, educating myself, even lossing my
teeth for Pete’s sake! But we do, we go on.
Let’s dispel just one of the many myths
October has wrought. The truth is, breast can-
U.S. Sen. Ron Wyden
www.wyden.senate.gov/contact
Twitter: @RonWyden
U.S. Sen. Jeff Merkley
www.merkley.senate.gov/contact
Twitter: @SenJeffMerkley
U.S. Rep. Suzanne Bonamici
www.bonamici.house.gov
Twitter: @RepBonamici
WASHINGTON LEGISLATORS
U.S. Sen. Patty Murray
www.murray.senate.gov/contactme
Twitter: @PattyMurray
U.S. Sen. Maria Cantwell
www.cantwell.senate.gov/contact
Twitter: @MariaCantwell
Laura Snyder/Submitted Drawing
A self-portrait illustrating gamma knife radiation.
cer is not an “easy” cancer. That’s an oxymo-
ron that deserves to leave the lexicon entirely;
cancer is never easy, not on the body and not
on the mind.
The unique thing about breast cancer
though, is October. Many cancers have aware-
ness months, but most disseminate serious
information.
Somehow, Breast Cancer Awareness Month
has turned into a marketing juggernaut. Some-
how, many people think it’s cute, or funny.
Somehow, people buyT-shirts saying things
like “Save the Ta-Tas,” “Check Your Boobies,”
“Fight Like a Girl.”
Let’s unpack these. Breasts are not “ta-tas.”
And when someone gets breast cancer the pri-
ority is saving a life, not saving the “ta-tas.”
It’s OK to call breasts “boobies” when you’re
4 or5, but to save lives? Really? To raise
awareness of a deadly disease? (Bear in mind
that everyone is already aware.)
Even if we check ourselves responsibly like
we’re told through these “awareness” cam-
paigns, and ind the cancer early, 28 percent of
us will have our cancer metastasize.
And “girl,” really? Don’t patronize us.
We’re supposed to think we can “ight” or
“battle” this disease into remission, but our
responses to treatment are dependent on the
biology of our particular individual cancers,
not on how hard one “ights.”
These slogans, just three among hundreds
I’ve seen, and events like No Bra Day add to
the scrum of product sales and cheerleading
that infantilize and sexualize this horrid disease
without doing anything to help the supposed
cause — to end breast cancer.
Meanwhile, those of us who are metastatic
patients (which is incurable), suffering it for
the remainder of our lives, are left wondering
where all this money goes and what our lives
are really worth.
Research progresses, very slowly. But the
vast majority of that new research does not
address metastatic TREATMENT.
There are an estimated 150,000 people
(this is the low end of the estimate) in the U.S.
alone actually LIVING with metastatic breast
cancer, and more than 40,000 people a year die
of the disease.
I participated in an advocacy training in
April 2015. Seven of the 31 participants have
died since. That’s 23 percent of our group in
a year and a half. It’s soul crushing to think
about.
The 40,000 statistic has not changed signii-
cantly in the last four decades, despite of all of
the money raised by organizations like Susan
G. Komen “for the cure.”
I’m all for research on prevention of metas-
tases — the new research buzzwords (I would
love for others not to suffer this in the future),
but what of the six-igure number in whom
metastases already live?
III. Yoga is Good!
I am a regular yoga practitioner. The
beneits to my day-to-day life have been
astounding.
One of my advocacy projects was and is
working with Columbia Memorial Hospital
and my yoga teacher to offer adaptive yoga for
cancer patients.
I’m happy to say we are in our third series,
this one 15 weekly sessions. We haven’t
charged money for it and we’ve expanded the
opportunity to include any cancer patient in
any phase of treatment, as well as pulmonary
rehab patients.
Very gentle yoga is proven to improve
breathing and reduce stress, anxiety, and
depression. It also strengthens the body with-
out impact on muscles and joints. These ben-
eits can both make treatment easier to tol-
erate and make living every day a happier
experience.
If you have cancer or chronic pulmo-
nary issues you can call Cindy Nemlowill at
Columbia Memorial Hospital (503-325-4321)
to register.
IV. Action (of course!)
Many people want to contribute to help the
ight against breast cancer. Money raised for
awareness campaigns is not productive any
more. The world is aware.
Money is desperately needed for
RESEARCH: to ind breast cancer’s cause;
yes, to prevent metastasis (this is what people
actually die of), and to develop and improve
treatment of metastases, for the many peo-
ple suffering with and dying of metastatic
breast cancer.
Not only must we raise money for orga-
nizations doing and promoting this work, we
must lobby those organizations who don’t
seem to or are just beginning to get it, such
as the Susan G. Komen Foundation and the
National Breast Cancer Coalition.
If enough of us shout, I think they might
U.S. Rep Jaime Herrera Beutler
www.herrerabeutler.house.gov
Twitter: @herrerabeutler
HR 1197: ACCELERATING
THE END OF BREAST
CANCER ACT
Sample letter, tweet, or phone call:
“Please amend HR 1197 to include metastat-
ic TREATMENT research. 150,000 or more
are already living with mets and need better
treatments for quality and duration of life!”
Contact both your own legislators and
the bill’s sponsor: U.S, Rep. Kathy Castor,
D-Miami
Website: www.castor.house.gov/contact
Twitter: @USRepKCastor
listen, and some already are. National Breast
Cancer Coalition helped put together a bill
that’s still in subcommittee in both the House
and the Senate that does not address dollars
for metastatic treatment improvement and
development.
You can contact your legislators and the
bill’s sponsor (see box) to ask them to amend
the bill — H.R. 1197 — to include metastatic
treatment.
Vice President Joe Biden has begun an
enormous, sweeping, and necessary initia-
tive called the Cancer Moonshot and I believe
he will continue this work long after he is
no longer the vice president. Ask the Moon-
shot to include improving metastatic treat-
ment into its goals (see box for contact
information).
And inally, MET UP (think ACT UP for
metastatic breast cancer), a direct-action group
whose co-founders are members of my advo-
cacy training group, is part of a consortium
putting on The Stage IV Stampede in Wash-
ington, D.C. on Oct. 13. It will be a day of lob-
bying and advocating, including a One-Mile
March on the Mall and the second annual D.C.
Die-In.
Even if you can’t go to D.C. you can par-
ticipate. Metavivor has set up the opportunity
to have meetings with your reps scheduled
in your own district. Register at www.action.
metavivor.org.
I’ll inally end with this. As Metavivor’s
website states, “You do not need to be an
expert to help create positive change. You just
need to stand up and speak out!”
Laura Snyder is a wife and a mom of two
newly minted adults. A former Astoria School
Board member and independent bookseller, for
the last four years she identiies as a profes-
sional cancer patient.
Some sympathy for the Republican presidential candidate
By FRANK BRUNI
New York Times News Service
o ahead and laugh at Donald
Trump’s claims that he was
foiled by a inicky micro-
phone on Monday night, but I can
relate. When I write a bad column, it’s
all my keyboard’s fault.
The other
columnists have
reliable keyboards.
I’m not saying it’s
a conspiracy, but
they do. Reach your
own conclusions.
When one of them taps out a beautiful
sentence, a beautiful sentence appears
on the computer screen, just the way
it’s supposed to.
When I try to tap out an even
more beautiful sentence — and my
sentences are amazing sentences; you
can’t believe these sentences — I
have to press and bang and hunch
closer to the desk and bang even
harder and still you never know.
G
The sentence winds up mangled.
It lacks a verb. Or it sprouts an
adverb (“bigly,” anyone?) that sounds
ridiculous, though I’m not. Readers
experience a rant where, really, there
was eloquent relection — or would
have been, if not for my keyboard.
A “snifle” sneaks into the equation
when there wasn’t any “snifle” at all.
It’s just a nasty trick of that keyboard.
A defective keyboard, which the other
columnists don’t have.
And the extra effort that this
keyboard demands means that I’m
dehydrated and have to drink more
water than they do. It’s not that I have
lop sweat. I’m no Marco Rubio, for
crying out loud. It’s not that I lack
stamina. I’m no Hillary Clinton.
No preparation
You’ve read this far and you’re
thinking: Dear God, he didn’t prepare
for this column. Not a whit. We were
warned that he might not, but we dis-
missed that as expectations-lowering
spin, because surely he appreciated
the magnitude of the moment, the
consequence of his task, an analysis
of the irst-ever general-election
debate between a woman and a circus
act. But instead of boning up on the
issues, reviewing past debates and
crafting a few can’t-miss zingers, he
just pumped air into his hair and more
air into his head and sauntered into
action as if the sheer, inimitable won-
der of his presence would be enough.
To which I say: President Barack
Obama plays too much golf. And
Rosie O’Donnell has been vicious to
me. Very vicious.
I like to test my audience’s math
skills. Only one of the following four
sentences is arithmetically plausible;
you tell me which. Clinton has been
ighting ISIS her entire adult life.
If she hadn’t been involved in the
Vietnam War, it would have ended
sooner and better. By leading from
behind, she enabled Adolf Hitler’s
rise. My federal tax rate over the last
ive years is a negative integer.
I also like to show restraint. There
are all sorts of things I could bring up
in this column that I’m not going to. I
could talk about the candidates’ mar-
ital histories. I could summon sexual
scandal. But, see, I’m not doing that,
because that’s beneath me, though I
reserve the right to do it in my next
debate column, because it might not
be beneath me then.
Just skip it
If there is a next debate column.
We’ll see. Rudy Giuliani says I should
skip it, because I’m not being treated
fairly, and if this journalism thing is
rigged against me, I can’t just snifle
and bear it, can I?
I have a club in Palm Beach,
investments in Charlotte, property
in Chicago. That’s not relevant to
the previous sentiment, but I don’t
stack my points in some coherent,
logical order. That’s what overly
programmed, endlessly rehearsed
columnists do. Besides which, I like
to brag.
I’ve been endorsed by organi-
zations that have never endorsed a
columnist before. A few may not even
exist. But they see in me something
that they haven’t seen in my peers.
Just ask Giuliani, though you’ll have
to wait your turn. He has live appear-
ances on three different networks
over the next two hours, including a
medical panel, moderated by Sean
Hannity, on the question: “Clinton:
Fully Recovered or Drugged Out the
Wazoo?”
I don’t need drugs, because I have
a great temperament. Great humility,
too, but I’d put my temperament
above even that. I don’t complain
when people gang up on me, and
they’re constantly ganging up on me:
It’s disgusting how they behave.
Whatever. I wrote a great column
anyway. I’m thrilled with this column.
All of the polls show that it’s a huge
success. Wait, what … they don’t?
You must be looking at the wrong
polls. Or the pollsters aren’t honest.
So many dishonest people out there.
Not that I’m complaining.
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