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August 4, 2016 - August 10, 2016

Mallorys
Story
Battling cystic
fibrosis is tough.
But Mallory Smith
is determined to
live happy.

Photo: Russie Denay

MALLORYS BLOG
DIMINISHING RETURNS
-XO\
,P KHUH DJDLQ LQ P\ VHFRQG KRPH
Stanford hospital. When I moved back
up to northern California, I enjoyed a nice
period of stability in which I was able
to see friends daily, work a lot, frequent
the gym, spend days outdoors and nights
out with the people I love, and adjust to
life in a new city. Still doing home IV
antibiotics for 4 hours three times a day,
plus breathing treatments 24 times a
day (totaling about 3 hours), plus visiting
Stanford for medical appointments every
two weeks, my medical regimen still kept
me busy. But for a few months, I took
some deep breaths. My new lease on life
tamed the anxieties and fears that had left
me wrecked with insomnia during my
months of sickness in Los Angeles.
A few hospitalizations for hemoptysis coughing up blood began to set
PH EDFN RQH LQ $SULO DQG RQH LQ 0D\
Then, in mid-May, in a shocking turn of
events, my doctor took me off all IV and
oral antibiotics not because I was finally better, but because I was resistant to all
of them and my progress had stagnated. It
was a case of diminishing returns. Since
WKH\ZHUHQWGRLQJPXFKEHQHILWDQ\PRUH
(that was evident based on findings both
in vivo and in vitro), removing them all
would be a sink or swim trial. It would
WHOOP\GRFWRUVDQGPHLILWVSRVVLEOHIRU
me to stay out of the hospital for more
than a few weeks while off antibiotics.
It would also be a forced rest period for
my bugs, hopefully allowing my chronic
bacterial infection a chance to become
sensitive to the drugs again.
I got two good weeks. Between May 11
and May 25, I had a good friend visit from
Oregon, walked 24,000 steps in a day during Bay to Breakers, gazed up at towering
redwoods in Muir Woods, ate waterfront

Page 8 Beverly Hills Weekly

I recently finished a book by the late

neurosurgeon Paul Kalanithi, When
Breath Meets Air. After working his
entire life to become a neurosurgeon and
in Sausalito, surfed (for the first time in ending up a chief resident at Stanford,
almost a year) in Pacifica, worked on my he was hit with a diagnosis of stage IV
book, visited the SFMOMA, applied for lung cancer. His career path had been
a job, and had my first real job interview brimming with opportunity to become
for a writing and copyediting job at an a renowned neurosurgeon/neuroscientist,
to do research that would change lives,
SF startup.
Then, I went to LA, and I got sick. and to continue operating on the very
0HPRULDO'D\ZHHNHQGEURXJKWIXQSDU- organ that makes people who they are.
ties and friends, but fevers. I quickly And then in a blink, everything shifted.
The life he had been leading was gone.
adjusted my expectations for the week I
had planned to surf every day while at The diagnosis left him facing his mortalKRPHEXW,YHOHDUQHGWKHKDUGZD\ WKDW ity at a much younger age than he ever
surfing with a fever and shortness of thought he would have to. It forced him
breath is dangerous. Fatigue limited the to consider the question of what makes
amount I could do, but I enjoyed every life meaningful which had long held his
minute of being home with my family interest in an abstract sense in a concrete, urgent, and highly personal way.
and my Kona.
Lung cancer and cystic fibrosis are
Every day, I faced the questions I
IDFHHYHU\WLPH,PVWUXFNZLWKP\ IRXU very different illnesses, of course, but
classic sickness symptoms (shortness of throughout the book I found myself
EUHDWK IDWLJXH IHYHU DQG KHPRSW\VLV laughing, crying, highlighting, underlinGR,QHHGWRFDOO6WDQIRUG"'R,QHHGWR ing, and saying yes, yes, yes, yes yes. So
go to the ER now? Not wanting to get much of it resonated.
With his diagnosis shining a spotlight
stuck admitted at a hospital in LA with
an order from Stanford doctors not to on his mortality, he wondered how he
IO\ EDFN QRUWK , GLGQW FDOO DQ\RQH DQG should spend his time. The way forward
got through the week. I had a secondary would seem obvious, he wrote, if only
motive to hide my symptoms I wanted I knew how many months or years I had
to see my friends Alex and Hannah OHIW7HOOPHWKUHHPRQWKV,GVSHQGWLPH
become Mr. and Mrs. Rosenthal that ZLWKIDPLO\7HOOPHRQH\HDU,GZULWHD
weekend, the original reason for my trip ERRN*LYH PHWHQ\HDUV,GJHWEDFNWR
to LA and a wedding I would have been treating diseases. The truth that you live
RQHGD\DWDWLPHGLGQWKHOS:KDWZDV,
devastated to miss.
I made it through the week and went supposed to do with that day?
The question of how to meaningfully
to the wedding, happily dancing and celcould
I
as
a life is not unique to those of
long
as
spend
newlyweds
the
ebrating
before needing to sit down and enjoy the us with health challenges. None of us
night from my seat. Later that night, my know if our lives will be cut short. But
fever spiked, and I knew that I would for people with cystic fibrosis, or stage
be admitted and back on IV antibiotics IV lung cancer, or any other life-limiting
as soon as I got back up north. I tossed illness, there is a certainty that life will
DQGWXUQHGDOOQLJKWKRSLQJWKDW,ZDVQW most likely be cut short to some extent.
sabotaging my own body by not going to This certainty forces us to examine our
values, prioritize our time, and search for
the emergency room right then.
meaning now, rather than later. I began
***

to realize that coming in such close contact with my own mortality had changed
both nothing and everything, Kalanithi
wrote. Before my cancer was diagnosed,
I knew that someday I would die, but I
GLGQW NQRZ ZKHQ $IWHU WKH GLDJQRVLV
I knew that someday I would die, but I
GLGQW NQRZ ZKHQ %XW QRZ , NQHZ LW
acutely.
Kalanithi hits the nail on the head of
one of the more frustrating aspects of trying to make the most of whatever amount
of time we may have. The most obvious
PLJKWEHDQLPSXOVHWRIUDQWLFDFWLYLW\WR
OLYHOLIHWR LWVIXOOHVWWRWUDYHOWRGLQH
to achieve a host of neglected ambitions.
Part of the cruelty of cancer, though, is
QRW RQO\ WKDW LW OLPLWV \RXU WLPH LW DOVR
limits your energy, vastly reducing the
amount you can squeeze into a day
Some days, I simply persist. Some days,
ZHVLPSO\SHUVLVWZHVLPSO\EUHDWKH
***
In this time of tumult and uncertainty,
I weigh the changes I may soon face
against the risks of not making those
changes. Just upstairs from my own hospital room, a dear friend lies intubated,
the ventilator robbing her of her ability
to speak. My heart breaks for her. Her
situation provides a staggering example
of how quickly things can change for
XVKRZZH FDQQHYHUWDNHDPRPHQWIRU
JUDQWHGKRZDVKHUEURWKHUVD\VUHDOLW\
always finds us.
A few weeks ago, on a night when I
ZDVQWVXUHKRZWRNHHSPDQDJLQJLWDOO,
ILQLVKHG3DXO.DODQLWKLVERRNDQGFULHG
But it reminded me of the way to move
IRUZDUGWKHZD\,YHEHHQRSHUDWLQJP\
HQWLUH OLIH 0D\EH LQ WKH DEVHQFH RI
any certainty, we should just assume that
ZHUH JRLQJ WR OLYH D ORQJ WLPH 0D\EH
WKDWV WKH RQO\ ZD\ IRUZDUG (YHQ LI
,P G\LQJ XQWLO , DFWXDOO\ GLH , DP VWLOO
living.
To read more, visit https://medium.
com/@mallorybsmith

coverstory
4(3369@::;69@

hospitalizations on my long-term prognosis,

and so the news they delivered to us was
important enough that we wanted everybody
that was significant in our lives to know.

Do you adhere to a rigid daily schedule?

Tell us about it.
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+RVSLWDO@LWVHOILVYHU\ULJLGEHFDXVH,WDNH
Battling cystic fibrosis is tough. But Mallory Smith is three, sometimes four, intravenous antibiotics three times a day, and they have to be
determined to live happy.
exactly spaced eight hours apart, and some
of them run for one hour, some of them run
By Mina Riazi
for two hours, some of them run for three
hours, so
would not be able
We spoke with 2010 Beverly High grad
,P FRQto
get
a
transplant,
Mallory Smith, first profiled in issue #634,
stantly
probably because
about her ongoing battle with cystic fibrostarting
the bacteria would
sis.
and stopbe too out of conping and
trol. But if I stay
You were diagnosed with cystic fibrosis,
switching
a chronic, life-threatening disease, at age on these antibiotbetween
ics for the indefithree. How did it affect you growing up
medicanite future, then
in Beverly Hills?
tions and
It affected me a lot because I was always WKH\OO KRSHIXOO\
I
have
going in and out of the hospital, so it really keep me sort of
alarms that
interrupted my schooling and sports, which stable for a while.
go off all
were both really important to me. But I think Nobody knows Mallory Smith and brother Micah Smith
day long.
it did bring me a lot closer to the important KRZORQJWKDWLVLWFRXOG
My
friends
SHRSOH LQ P\ OLIH WKH IULHQGV , KDG ZHUH be months, it could be
laugh at me
very present and always very supportive a couple of years, we
because every
whenever I was sick. It brought my family GRQW UHDOO\ NQRZ EXW
five minutes
closer together and it brought my friends DW VRPH SRLQW WKH\OO
another alarm is
stop working and my
closer together.
going off for a
lungs will decline to the
different treatSRLQW ZKHUH ,OO QHHG D
In a recent Facebook post, your mom
ment or a diflung transplant. So what
'LDQH6KDGHU6PLWKZURWH,WVFOHDU
ferent IV mediZHUH KRSLQJ IRU DW WKLV
WKDWPRVWSHRSOHGRQWXQGHUVWDQG
FDWLRQ LW NHHSV
time
is
to
have
a
transthe severity of the situation because
my schedule
plant center somewhere
[Mallory] looks so good and does so
very rigid. I
in the country that will
much. Can you update us on your situhave to fit in
agree to take on my
ation?
two-to-four
For the last year, I have struggled a lot case. But my case is
breathing treatwith fighting the chronic infection that I very risky. In the past,
ments a day.
KDYHKDGVLQFH,ZDV,YHEHHQFRORQL]HG everybody that has been
Other than
with a specific bacteria, burkholderia ceno- DSSURDFKHG >WR WDNH RQ@
my
mediFHSDFLDVLQFH,ZDV\HDUVROGDQGLWVD my case has said no.
cal stuff, my
EDFWHULDWKDWLVH[WUHPHO\GDQJHURXV:HYH 7KDWV VRUW RI D FKDOschedule is a
been managing it well my whole life, but OHQJH WKDW ZHUH IDFLQJ
little bit fluid
ZLWKLQ WKH ODVW \HDU LWV EHFRPH H[WUHPHO\ right nowto try to
because I work
UHVLVWDQW WR DQWLELRWLFV DQG VR ,YH KDG WR get a center that agrees
from home, so
stay on multiple intravenous antibiotics for to take on my case for
the rest of my
essentially the whole year, since last July. when the time comes.
schedule kind
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0\GRFWRUVDWWKLVSRLQWKDYHVDLGWKH\YH
of depends on
never seen a patient whoonce they get to PRP@ VDLG WKDW VKH
how I feel. I
this point of the bacteria becoming so resis- WKLQNVLWVFOHDUWKDWDORW
do freelance
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D SDWLHQW WXUQ DURXQG HVVHQWLDOO\ WKH\YH LVEHFDXVHZHGLGQWHYHQXQGHUVWDQG>LW@, been working on the text of a coffee table
never seen it get to the point where the bac- was sort of living in the dark. I thought that book for an environmental philanthropist
teria all of a sudden becomes controllable. I was going through a bad patch and that I in conjunction with the National Wildlife
They said that without antibiotics I would was going to get better and that my life was )HGHUDWLRQ :HUH DFWXDOO\ ILQLVKLQJ LW XS
not live a year. The antibiotics are keeping going to go back to how it was. I used to next weekthe timing is kind of crazy. I
PHDIORDWULJKWQRZWKDWVZKDWP\PRP play volleyball, I used to surf, and I used to also ghostwrite articles for a healthcare law
means when she refers to IVs, because the EHH[WUHPHO\DFWLYH,ZDVOLYLQJXQGHUWKH firm.
DQWLELRWLFVDUHLQWUDYHQRXV7KDWVZK\WKHLU impression that we would get this infection
SURJQRVLVLVWKDW,ZLOOVWD\RQ>WKHDQWLELRW- under control and my life would go back to You have a strong support system comLFV@IRUHYHUIRUKRZHYHUORQJWKH\FRQWLQXH that way again.
prised of family and friends. How have
The other thing is that cystic fibrosis is they helped you deal with the different
to work. Once they stop working, I will
hopefully be able to get a lung transplant. really not a visible illness. If anybody saw aspects of cystic fibrosis?
,WVDOLWWOHELWFRPSOH[EXW,VWLOODPDEOHWR PH ULJKW QRZ \RXG EH YHU\ VXUSULVHG
7KH\YH EHHQ LQFUHGLEOH , ZRXOG VD\
EUHDWKH ,P QRW LQ UHVSLUDWRU\ IDLOXUH ULJKW EHFDXVH,VWLOOORRNUHDOO\KHDOWK\,YHKDG I have the best family in the world, I feel
QRZDQGWKDWVEHFDXVHRIWKHDQWLELRWLFV,I H[SHULHQFHV LQ P\ OLIH ZKHUH LWV LPSRV- UHDOO\ OXFN\ ,P UHDOO\ FORVH ZLWK ERWK RI
I were to go off of all the antibiotics today, sible for the people around me to compre- my parents, and my brother, and my grandthe doctors have basically said that within a KHQGZKDWVKDSSHQLQJZLWKP\OLIHDQGWR parents, my aunts, my uncles and my cousyear I would go into respiratory failure and understand the impact of each of my current ins. My family has been a very important

Cystic fibrosis is
really not a visible
illness. If anybody saw
PHULJKWQRZ\RXG
be very surprised,
because I still look
UHDOO\KHDOWK\,YHKDG
experiences in my life
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for the people around
me to comprehend
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with my life and to
understand the impact
of each of my current
hospitalizations on my
long-term prognosis

part of my support system.

I moved back up to northern California,
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VFKRRO DQG FROOHJH DUH KHUH VR WKDWV EHHQ
really nice for me, too. I have a lot of
friends from Beverly High that live up here
now.
You currently operate a blog and
are considering writing a book.
Tell us about that.
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started doing some writing about my disHDVH ILUVW LQ D FUHDWLYH QRQILFWLRQ ZULWLQJ
class and then for a senior project. I found
that it was a really therapeutic way to
KDQGOHLVVXHVWKDWFDPHXS,WKLQNLWVUHDOO\
empowering to be able to create your own
narrative, and so I started to do that more. I
never planned on publishing anything on the
blog, but about a year ago, when I was still
living in Manhattan Beach, I had been doing
a lot of writing and I just thought, why not,
I might as well post this and see what happens. I was actually inspired by a friend who
was taking a memoir writing class. She was
doing a lot of writing and sharing it with
friends over email, and it made me want
to share my writing more with friends. The
first major blog post that I put up was called
And We Are Big, and I did that about a
year ago and the response was really amazing and overwhelming. It made me want
to continue writing specifically for a more
public audience as opposed to just writing
for myself, which is what I had been doing
at that point.
,PQRWVXUHLI>WKHERRN@LVJRLQJWREHD
FROOHFWLRQRIHVVD\VRULILWVJRLQJWREHD
typical book. I have a lot of thinking to do
about that.
What advice would you give to other
people living with cystic fibrosis?
, ZRXOG VD\ WKDW LWV DOO DERXW ILQGLQJ
a good balance between protecting your
health and taking risks and living your life.
At any point in the progression of the disease, the balance of those things is going to
be different. When I was younger, I would
say there was probably more emphasis on
living my life and slightly less emphasis on
my health, and as I got older there was more
emphasis on protecting my health and less
RQ OLYLQJ P\ OLIH 1RZ WKDW ,P DW D SRLQW
ZKHUHP\GRFWRUVGRQWQHFHVVDULO\IRUHVHH
P\KHDOWKLPSURYLQJWKH\YHVDLGVSHFLILcally, live your life, do the things that you
want to do, do whatever makes you happy.
7R RWKHU SDWLHQWV , ZRXOG VD\ >GRQW@ HYHU
ORVHVLJKWRIWKDWSDUWEHFDXVHLWVREYLRXVO\
important to focus on health and be very
compliant with all the treatments, but you
have to always remember what the reason is
WKDW\RXUHGRLQJWKLVZKDWVWKHWKLQJWKDW
PDNHV\RXKDSS\WKDWVHYHQWKHUHDVRQZK\
you keep fighting?
What has cystic fibrosis taught you?
This is very clich, but one of the things
WKDWLWVWDXJKWPHLVWKDWHYHU\GD\PDWWHUV
EHFDXVH \RX GRQW NQRZ KRZ PDQ\ GD\V
\RX KDYH 7KHUHV UHDOO\ QR SRLQW LQ WKLQNLQJRIDQ\GD\DVDZDVWHGGD\0\PRPV
motto is Find the joy in every day.

August 4- August 10, 2016

Page 9