Roughly one in a hundred women will develop ovarian cancer. This film…
Outside In
- Description
- Reviews
- Citation
- Cataloging
- Transcript
What happens when you lose your ovaries or your libido, your long-time partner or your home, your identity or your hope for a full, long life? Any one such loss would shake you. What about all of them?
Diagnosed with advanced ovarian cancer at age 42, Dr. Katherine 'Kasia' Clark was given 1-2 years to live. Ten years later, OUTSIDE IN reveals her fight to reclaim body and soul, following Kasia from hospital bed to exam rooms and doctor consultations, training for triathlons, making art movies with her mother, and suing the doctors who missed her diagnosis. From the unique point of view of a doctor-turned-patient, Kasia seeks answers to profound questions: 'How can I save myself?' 'Who can I trust?' 'Who am I now?' 'How do I choose to live?' 'When do I prepare to die?'
Through frank discussions with her medical doctors, psychiatrist, physicist father, artist mother, schizophrenic sister, and good friends, Kasia exposes her fears, longings, and hopes. She challenges her body with risky rock climbs, rigorous swims, vertical ski slopes. She speaks in an articulate, angry, and determined voice. She swims and swims. She finds solace in art and nature, vindication in the law, spiritualism in music, and a sense of control in filmmaking and mastering the violin.
While relying on evidence-based medical treatment and her own experience as a doctor, Kasia steps out of the box to save her life and redefine her identity, professionally and personally, physically and emotionally, and sexually. She leaves her longtime partner and home in the country to rediscover herself with new people and places, experimenting with mind/body therapies and radical nutritional regimens, always pushing herself physically to solve the mystery of, 'How can I be sick if I'm getting stronger?'
OUTSIDE IN was filmed over nine years and draws from 170 hours of footage, film clips, home movies, still photos, artwork, and clippings. Enhanced by multi-layered imagery, artistic elements, and a music score as complex as the film's subject, OUTSIDE IN reflects the nature and rhythms of a fascinating individual from the 'outside in.' Viewers are left with fresh thoughts and feelings about healing, identity, and their own way of life, guided by the wisdom of Henry David Thoreau, 'You must live in the present, launch yourself on every wave, find your eternity in each moment.'
*** 'Katherine Deutch Tatlock's nine-year-project documents one woman's unique approach to receiving a cancer diagnosis. ...Clark's take-no-prisoner attitude will surely inspire some viewers...Recommended.' -Video Librarian
'In her early forties Dr. Katherine ('Kasia') Clark, received a diagnosis no woman wants to hear-advanced ovarian cancer. This film project documenting her experiences over the ensuing nine years was undertaken as both a record of the journey to help others as well as a creative form of therapy. That the subject is tough is undeniably true, as demonstrated throughout her fierce struggle to live her life on her own terms, not just as a patient, and certainly not as a victim. She is very frank, however, about the challenges-physical and emotional-of dealing with this insidious and unpredictable cancer. Interspersed with footage of her commentary are interviews with family, friends, doctors and therapists. The fact that Clark is herself a family physician also adds an interesting twist, particularly in her embrace of complementary therapies as a patient. Ultimately this filmed journal plays like a battle between two dogged fighters-Clark and cancer. Although the documentary ends inconclusively, the money is on Clark. -Educational Media Reviews Online
'Very powerful...very direct, intimate and personal. It certainly raised my consciousness to certain important patient issues that I was not previously sensitive to as I focus on the much easier issues of providing traditional medical care.' -Dr. John Saltzman, Gastroenterologist, Director of Endoscopy Brigham and Women's Hospital
'A remarkable film, very truly inspiring. People need to hear [this] story, not only as a personal journey, but also as a cautionary tale.' -Andrew Solomon, Author The Stone Boat
'A remarkable accomplishment! Kasia is a surrogate for millions of people who have shown heroic resolve and resilience in the face of terrifying experiences and uncertainty.' -Deborah L. Levy, PHD, Director Psychology Research Laboratory, McLean Hospital
'It's a powerful and important film that I think has a lot to teach, especially to women. Kasia's life force and discipline are remarkable.' -Sandra Schulberg, Film Producer, Founder of Independent Feature Project
'As a physician, OUTSIDE IN gave me the perspective of a patient struggling with a life threatening disease. As a fellow physician, it made me think about what it's like to switch places, being on the receiving end of treatment. As a psychiatrist, it inspired me to ponder upon the various meanings of 'treatment refusal.' As a woman, I found myself thinking about issues of body image, fertility, femininity and societal norms. As a human being, I was simply touched. What an important and inspiring piece of work!' -Orit Avni-Barron, MD, Director of Mental Health at The Fish Center for Women's Health, Brigham and Women's Hospital
'I am very moved by it. It is a documentary that should be seen by a lot of people; both for the information and the relevance of the emotional journey. Through you, we learn about ourselves. OUTSIDE IN is skillfully made, certainly skillfully structured...my congrats to everyone involved in the project.' -Michael Glassbourg, Professor Film and Television, Humber College
Citation
Main credits
Tatlock, Katherine Deutch (Screenwriter)
Tatlock, Katherine Deutch (Director)
Tatlock, Katherine Deutch (Producer)
Eddy, Julia Dixon (Screenwriter)
Eddy, Julia Dixon (Producer)
Clark, Katherine Whipple (Producer)
Clark, Katherine Whipple (Narrator)
Other credits
Music by Cyrus Sink; editor, Julia Dixon Eddy; cinematography, Ed Howe ... [et al.].
Distributor subjects
Death and Dying; Fanlight Collection; Health Care Issues; Health Issues; Human Sexuality; Lesbian Studies; Women's Health; Women's StudiesKeywords
WEBVTT
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I go in for this ultrasound
thinking it’s a routine thing.
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What! And all of a sudden, the radiologist
saying \"Dr. Clark, you know, your… your pelvis
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is filled with cysts and your
abdomen is filled with the ascites.
00:00:15.000 --> 00:00:19.999
And I started shaking like a leaf because
it came to me as a complete surprise.
00:00:20.000 --> 00:00:24.999
The prognosis is that I’m to be dead in
two years, but maybe there’s a way out.
00:00:25.000 --> 00:00:29.999
I’m taking a very exploratory approach
to my life ever since cancer.
00:00:30.000 --> 00:00:34.999
I’ve decided I’m going to be
constantly questioning everything.
00:00:35.000 --> 00:00:39.999
When Kasia brought to her
initial diagnosis and then
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how she approached treatment
was strength and the ability,
00:00:45.000 --> 00:00:49.999
the need and the desire to get
as much information as possible.
00:00:50.000 --> 00:00:54.999
Not just with treatment options
but also her own personal growth.
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[music]
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I am making a movie and I’m hoping the movie
will educate people about this disease
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that I’ll educate the medical profession and the late
public both. And I’m hoping that this film will…
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will heighten awareness
including my own awareness.
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One thing I can say for cancer
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is that it’s given me the chance to try
to every haircut and color under the sun.
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I have stuck with a Polish
nickname my mother gave me
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Kasha, short for Katarzyna or Katherine.
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My mother taught art, when my
sister Jackie and I were kids.
00:02:05.000 --> 00:02:09.999
My father was an astrophysicist at MIT.
00:02:10.000 --> 00:02:14.999
Our lives were filled with art
and science, sports and travel,
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politics and music. But all that
changed when Jackie was committed
00:02:20.000 --> 00:02:24.999
for schizophrenia, at age 16.
I was a freshman at Brown.
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It was the first great shock of my
life and the reason I became a doctor.
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The next shock was my mother’s
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move to New York City, which
fractured the family further.
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But this story is about the
final shock, my diagnosis
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of advanced ovarian cancer at age 42
and the life it has led me to choose.
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[music]
00:02:55.000 --> 00:02:59.999
My journey began in upstate New York where I
had a beautiful home with my partner Julie.
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How does your neck feel today? Actually it
hurts today. I practiced family medicine
00:03:05.000 --> 00:03:09.999
at a community health center. I
was young, active and healthy,
00:03:10.000 --> 00:03:14.999
living a pretty idealistic life.
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In 1998, I was diagnosed with
uterine fibroids, a condition
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common to women in their
childbearing years. A year later,
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I started having discomfort while urinating.
My gynecologist ordered a pelvic ultrasound
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which revealed large fibroids, my
ovaries were reported as normal.
00:03:35.000 --> 00:03:39.999
There’s not a specific pain or ache
that you can say if I have this
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I now have a ovarian cancer.
And it can cause constipation,
00:03:45.000 --> 00:03:49.999
it can cause diarrhea, bloating,
feeling for more easily and pain.
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Just two months later,
00:03:55.000 --> 00:03:59.999
at my annual exam, the gynecologist
found my uterus enlarged and comparable
00:04:00.000 --> 00:04:04.999
to a 16-week pregnancy. The
follow up ultrasound report
00:04:05.000 --> 00:04:09.999
gave a final impression as follows;
one very large fibroid uterus
00:04:10.000 --> 00:04:14.999
with probable fibroids projecting
into the adnexae on both sides,
00:04:15.000 --> 00:04:19.999
cannot absolutely exclude an ovarian mass.
Two, there is also ascites noted.
00:04:20.000 --> 00:04:24.999
The report also stated that the
moderate amount of ascites
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or free fluid was in both the
pelvis and elsewhere in the abdomen
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and ominous sign. The
gynecologist also recommended
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that I have a follow up ultrasound to demonstrate
that if the fluid was due to a ruptured
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ovarian cyst then the fluid which resolve
within a few weeks. Unfortunately, she never
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actually gave me a requisition to go for
that test and I believe that this is because
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she knew that I had already
had appointments to see
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two other gynecologists. So she felt
that her responsibility had ended.
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I don’t think she realized that I
was in denial about the findings.
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Umm… I don’t think she realized that she
needed to treat me like another patient
00:05:10.000 --> 00:05:14.999
and that I really wasn’t capable of taking
care of myself at that moment in time.
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Despite the warnings in the report the two other
gynecologists stuck with the fibroid diagnosis
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and didn’t even mention the
possibility of cancer.
00:05:25.000 --> 00:05:29.999
So I was reassured and I went
widely on my way because
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I wasn’t getting the message from my doctors that
there might be a life threatening condition here,
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requiring immediate surgery. When was your bypass
surgery? Yeah, on the whole I was feeling very well,
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I mean, I was working long hours and
at home I was working in the garden
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I was physically active. And I had a lot
of things I wanted to do in my life.
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You know, I figured fall I’ll give…
I’ll go for the operation in September.
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But what happened was in
July and August I started
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to feel more uncomfortable because I was
developing a lot of ascites in July,
00:06:05.000 --> 00:06:09.999
so I called beginning of August saying, you
know what I think we need to move on this.
00:06:10.000 --> 00:06:14.999
On August 31st, 2000,
that was the day that I…
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I received my diagnosis of ovarian cancer. I went
in for what I thought was a routine ultrasound…
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Mm-hmm. Prior to elective
surgery for fibroids
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and while I was on the table the radiologist
put the transducer on my abdomen
00:06:30.000 --> 00:06:34.999
and said \"You know, what Dr. Clark
your pelvis is filled with cysts
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and do you like me to call the director of gynecologic oncology. That’s when
you know there’s a problem with the top guy is willing to see you immediately.
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I think I was looking for
your mother, you know,
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because most of my patients are older.
From my point of view looking at it,
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I saw scans and stuff and some
of it looked pretty frightful.
00:06:55.000 --> 00:06:59.999
He examined me, sent me for a CAT scan
and gave me a presumptive diagnosis
00:07:00.000 --> 00:07:04.999
of advanced ovarian cancer.
So he says to me \"Well,
00:07:05.000 --> 00:07:09.999
are you okay, do you think you can make it home\" and I said,
\"Yeah, I think I can drive myself home,\" but I give you a call.
00:07:10.000 --> 00:07:14.999
We were having a dinner
party, \"Oh, my gosh!
00:07:15.000 --> 00:07:19.999
We have company here.\" I mean, I started to give
her a hard time about the fact that she’s still
00:07:20.000 --> 00:07:24.999
in the city and she says
to me, \"Julie its… it’s…
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this is different story.\" It’s not
fibroids. It’s not fibroids, no.
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As a physician immediate questioning
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of was something missed, I mean, how long has
this been present for, how could this come to me
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as a surprise? Meanwhile I drive home
00:07:45.000 --> 00:07:49.999
and who’s in the yard, Judy
Mello and her husband.
00:07:50.000 --> 00:07:54.999
I walked in and Julie and Judy were both
00:07:55.000 --> 00:07:59.999
absolutely ashen. Mm-hmm. You
were struggling emotionally
00:08:00.000 --> 00:08:04.999
trying to come in and out of… of the shock of this
instead of not accepting it and wanting to be in denial
00:08:05.000 --> 00:08:09.999
and then moving in the direction of, you
know, am I going to die, this is it?
00:08:10.000 --> 00:08:14.999
Yeah. Uh… I felt so compelled to pull
you out of the shock you were in
00:08:15.000 --> 00:08:19.999
and help you get beyond, you know, whose fault
was it and move into what do we do now?
00:08:20.000 --> 00:08:24.999
And to be there for Julie
too because I wanted to
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support her as well. I don’t
think I stopped crying
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for the first three days. It
was… it was beyond…beyond,
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I mean, because here I was
having this great life,
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and great house, and great
friends and great girlfriend
00:08:45.000 --> 00:08:49.999
and poof everything changed.
00:08:50.000 --> 00:08:54.999
Just like the rug is pulled out from under
me and all of a sudden I am a patient
00:08:55.000 --> 00:08:59.999
and I am at the mercy of this guy
who cuts me open takes out all my
00:09:00.000 --> 00:09:04.999
reproductive organs. But Dan Smith had
to leave behind a seven-centimeter tumor
00:09:05.000 --> 00:09:09.999
in the pelvis because it was actually
embedded in the bone not a good outcome
00:09:10.000 --> 00:09:14.999
for initial surgery. He also left
behind numerous tiny nodules
00:09:15.000 --> 00:09:19.999
on my liver, spleen and intestines.
00:09:20.000 --> 00:09:24.999
When Kaisa came to see me she told me
that she had stage 3 ovarian carcinoma
00:09:25.000 --> 00:09:29.999
and that she had maybe a 10%
or 20% chance of being alive
00:09:30.000 --> 00:09:34.999
in two years. Kaisa
responded to this diagnosis
00:09:35.000 --> 00:09:39.999
the way Kasia response to
significant things with panoply of
00:09:40.000 --> 00:09:44.999
intense feelings;
00:09:45.000 --> 00:09:49.999
rage, sadness, despair.
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What I did is I dug up
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those ultrasound findings from seven months earlier
and I was immediately in a state of outrage
00:10:00.000 --> 00:10:04.999
because I recalled having been
evaluated by three gynecologists
00:10:05.000 --> 00:10:09.999
each of whom had the opportunity to
make that early diagnosis and all three
00:10:10.000 --> 00:10:14.999
of these gynecologists had
failed to nail the diagnosis.
00:10:15.000 --> 00:10:19.999
I was on emotional rollercoaster
and this went on for months.
00:10:20.000 --> 00:10:24.999
Because I had a deep fear
00:10:25.000 --> 00:10:29.999
that I was gonna die imminently.
00:10:30.000 --> 00:10:34.999
Started to realize that you as a doctor as human
as well and… And that too that all of a sudden
00:10:35.000 --> 00:10:39.999
I’m confronted by my own mortality when I’ve
been dealing with other people’s mortality.
00:10:40.000 --> 00:10:44.999
In the entire our entire relationship
I had never seen you cry.
00:10:45.000 --> 00:10:49.999
And there were no words… there were
no words, there wasn’t anything.
00:10:50.000 --> 00:10:54.999
I learned pretty early on that’s
pretty much all you can do, be there.
00:10:55.000 --> 00:10:59.999
Spouses are affected
00:11:00.000 --> 00:11:04.999
and I see that in when I talk to them
00:11:05.000 --> 00:11:09.999
uh… when our social workers talk with them uh… there
have been multiple studies that have looked at this
00:11:10.000 --> 00:11:14.999
and I’ve shown that as patient’s stress levels go up,
significant other stress levels typically go up.
00:11:15.000 --> 00:11:19.999
Well, I have to confess
that my first reaction
00:11:20.000 --> 00:11:24.999
was anger that she didn’t do something
00:11:25.000 --> 00:11:29.999
about it earlier. You were angry at me?
Yes, I was.
00:11:30.000 --> 00:11:34.999
Because I remember looking at that
enormous stomach of yours and saying
00:11:35.000 --> 00:11:39.999
why don’t you check this out?
00:11:40.000 --> 00:11:44.999
And umm… I don’t think I
cried, I just had nightmares.
00:11:45.000 --> 00:11:49.999
We were in Canada when we
heard the news that she had…
00:11:50.000 --> 00:11:54.999
had been diagnosed with ovarian
cancer and we drove as quickly
00:11:55.000 --> 00:11:59.999
as we could to uh… meet
her and it was a very…
00:12:00.000 --> 00:12:04.999
a very sad very emotional moment.
00:12:05.000 --> 00:12:09.999
And then, we have been with her
through numerous operations
00:12:10.000 --> 00:12:14.999
and every time that she’s gone through one of
these medical episodes it’s been… been a strain.
00:12:15.000 --> 00:12:19.999
(inaudible).
00:12:20.000 --> 00:12:24.999
Hi, my name is Jacqueline Clark… That’s okay.
Kasia’s sister. You are my sister and what else?
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I love you dearly. You love me dearly?
I love you dearly.
00:12:30.000 --> 00:12:34.999
I won’t let you die, anything I
go down to the grave with you.
00:12:35.000 --> 00:12:39.999
[music]
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I knew uh… what the odds were
and I originally thought
00:12:45.000 --> 00:12:49.999
she came back so that I could
help her to die and I was wrong.
00:12:50.000 --> 00:12:54.999
What I realized as we began our
work was that she came back
00:12:55.000 --> 00:12:59.999
so that I could help her to live.
00:13:00.000 --> 00:13:04.999
I went in (inaudible) opinions of
three different medical oncologists
00:13:05.000 --> 00:13:09.999
before I picked my medical oncologist at Dana
Farber. This is a life of a cancer patient.
00:13:10.000 --> 00:13:14.999
Kasia is unusual because she is young
00:13:15.000 --> 00:13:19.999
and most women with ovarian cancer are not young, most women
are aged 60 or above. Hi Dr. Clark. Hey! How you doing?
00:13:20.000 --> 00:13:24.999
So she brought to this her youth
00:13:25.000 --> 00:13:29.999
and she brought with her medical knowledge
which she could build upon to charge
00:13:30.000 --> 00:13:34.999
her course of treatment. The
standard of care at that point
00:13:35.000 --> 00:13:39.999
and still is today are two drugs,
one drug is called carboplatin
00:13:40.000 --> 00:13:44.999
and other drug is called Taxol, and these
two drugs typically given together
00:13:45.000 --> 00:13:49.999
intravenously once every three weeks
for six treatments. (inaudible).
00:13:50.000 --> 00:13:54.999
Kasia, being a physician came
into this knowing that a job
00:13:55.000 --> 00:13:59.999
had to be done at the chemotherapy
had to be an aggressive approach
00:14:00.000 --> 00:14:04.999
and that’s exactly what we took. She hold on
to the clinical trial called triple doublets,
00:14:05.000 --> 00:14:09.999
meaning that there are doubles of drugs
but there are three sets of doublets.
00:14:10.000 --> 00:14:14.999
It offered three opportunities
to kill the cancer cells,
00:14:15.000 --> 00:14:19.999
the first one being the doublet
carboplatin and taxel, the second
00:14:20.000 --> 00:14:24.999
with cisplatin and gemcitabine,
and the third with topotecan
00:14:25.000 --> 00:14:29.999
and doxorubicin. I decided to take
the risk because my oncologist
00:14:30.000 --> 00:14:34.999
convinced me it was of worth doing
that this trial had the potential
00:14:35.000 --> 00:14:39.999
of keeping me in remission
for much longer time than
00:14:40.000 --> 00:14:44.999
the standard therapy. I thought that
this would be uh… an opportunity
00:14:45.000 --> 00:14:49.999
perhaps to eradicate the cancer entirely.
00:14:50.000 --> 00:14:54.999
All of us struggle with
00:14:55.000 --> 00:14:59.999
wanting to be in control and this has
certainly been an issue for Kasia,
00:15:00.000 --> 00:15:04.999
the cancer exacerbated her experience
00:15:05.000 --> 00:15:09.999
and therefore it became more important
that she control whatever she could.
00:15:10.000 --> 00:15:14.999
Going through cancer has been
very scary, and terrifying
00:15:15.000 --> 00:15:19.999
and I need support.
00:15:20.000 --> 00:15:24.999
I didn’t wanna live the last years of my life in a
state of depression. I went in to psychotherapy
00:15:25.000 --> 00:15:29.999
within a couple of months of
my diagnosis and I’ve been
00:15:30.000 --> 00:15:34.999
in psychotherapy ever since. We hadn’t
seen each other for many years.
00:15:35.000 --> 00:15:39.999
When she got this terrible
illness who I had been
00:15:40.000 --> 00:15:44.999
in her internal life made her feel as though
perhaps I could help with this struggle.
00:15:45.000 --> 00:15:49.999
[music]
00:15:50.000 --> 00:15:54.999
Psychotherapy has been helpful but
also I think exercise has been
00:15:55.000 --> 00:15:59.999
a lifesaver for me. Within
uh… six to eight weeks of my
00:16:00.000 --> 00:16:04.999
diagnosis and major abdominal surgery I
became incredibly active physically.
00:16:05.000 --> 00:16:09.999
I took up walking, then
running, then swimming.
00:16:10.000 --> 00:16:14.999
[music]
00:16:15.000 --> 00:16:19.999
What I was doing was I was having
a dialogue with cells in my body,
00:16:20.000 --> 00:16:24.999
not through words but through
activity, through motion.
00:16:25.000 --> 00:16:29.999
With every lap in this pool, I’m getting
stronger, my lungs are getting stronger,
00:16:30.000 --> 00:16:34.999
my heart’s getting stronger. How could I be
getting sicker when I’m getting healthier?
00:16:35.000 --> 00:16:39.999
One symptom that you have prevented
by your physical activity is fatigue.
00:16:40.000 --> 00:16:44.999
A very insidious and chronic
problem that women have
00:16:45.000 --> 00:16:49.999
when they’re undergoing chemotherapy, even after
that fatigue can really persist for quite a while
00:16:50.000 --> 00:16:54.999
months to even years and that clearly
impact on them, sexuality as well.
00:16:55.000 --> 00:16:59.999
I’ve had a lot of patients
tell me that they feel
00:17:00.000 --> 00:17:04.999
less sexual to their partner, they
lose their hair, they may gain weight
00:17:05.000 --> 00:17:09.999
as a result of the chemotherapy. So they
feel less attractive? Yeah, that’s correct.
00:17:10.000 --> 00:17:14.999
There is the psychological aspects
of either outward changes
00:17:15.000 --> 00:17:19.999
or perhaps depression. You are
less wanting to be more intimate
00:17:20.000 --> 00:17:24.999
with somebody. Third issue
is medical reasons,
00:17:25.000 --> 00:17:29.999
if a woman loses their ovaries and
doesn’t choose to go on estrogen
00:17:30.000 --> 00:17:34.999
umm… they may have hormonal changes
uh… that make their drive less.
00:17:35.000 --> 00:17:39.999
I was thrown into menopause,
00:17:40.000 --> 00:17:44.999
I lost my reproductive capacity
and that part of my body became
00:17:45.000 --> 00:17:49.999
an intense focus for months
and years after that.
00:17:50.000 --> 00:17:54.999
And the flood of feelings that ensued
and the sudden intense relationship
00:17:55.000 --> 00:17:59.999
with a male surgeon brought up a lot of
00:18:00.000 --> 00:18:04.999
sexual feelings for me. Not
that anything ever happened
00:18:05.000 --> 00:18:09.999
with the surgeon it was just because of that
I began to question my sexual identity.
00:18:10.000 --> 00:18:14.999
I was utterly dependent upon
00:18:15.000 --> 00:18:19.999
Dan Smith for my life. You
can take it if you want to.
00:18:20.000 --> 00:18:24.999
Dr. Smith played an enormous
role in Kasia’s physical life.
00:18:25.000 --> 00:18:29.999
But he played a very much greater
part in her mental life.
00:18:30.000 --> 00:18:34.999
Sometimes when we need a hero
or a savior, it excited her,
00:18:35.000 --> 00:18:39.999
it helped her become aware of feelings
that she hadn’t had in a long time.
00:18:40.000 --> 00:18:44.999
Uh… And… and it served a good purpose.
It made me think about,
00:18:45.000 --> 00:18:49.999
you know, my sexual orientation and whether you
know, since I was having heterosexual feelings
00:18:50.000 --> 00:18:54.999
whether I might really be umm…
more heterosexual than homosexual.
00:18:55.000 --> 00:18:59.999
I’ve always considered
myself to be bisexual,
00:19:00.000 --> 00:19:04.999
but I was in a long term comfortable
monogamous relationship with a woman
00:19:05.000 --> 00:19:09.999
for eleven years. The
diagnosis has not to be
00:19:10.000 --> 00:19:14.999
right off of that comfortable pedestal
00:19:15.000 --> 00:19:19.999
and the emotions I was feeling
propelled me forward to become
00:19:20.000 --> 00:19:24.999
very curious about my body,
my sexuality and uh… to begin
00:19:25.000 --> 00:19:29.999
to explore in many different ways.
00:19:30.000 --> 00:19:34.999
At minimum, it totally took my
mind away from the fear of death
00:19:35.000 --> 00:19:39.999
and focused it on the life force itself.
00:19:40.000 --> 00:19:44.999
My objective was to get as comfortable
as I possibly could with my body
00:19:45.000 --> 00:19:49.999
and I did this through
traditional psychotherapy,
00:19:50.000 --> 00:19:54.999
but I also engaged in much
more body oriented therapies.
00:19:55.000 --> 00:19:59.999
Trust, your body really
knows how to breathe.
00:20:00.000 --> 00:20:04.999
One was called process therapy,
00:20:05.000 --> 00:20:09.999
you are held by a therapist and they
breathe with you in order to help you
00:20:10.000 --> 00:20:14.999
elicit deep emotion. Keep
that picture in your mind…
00:20:15.000 --> 00:20:19.999
I hate being sick. Stay with that…just stay with that…
just stay with that. Come on… I hate being sick.
00:20:20.000 --> 00:20:24.999
I hate it! I don’t wanna be sick!
00:20:25.000 --> 00:20:29.999
I don’t wanna be sick!
Oh, I wanted to go home.
00:20:30.000 --> 00:20:34.999
It’s not fair. Keep moving…
keep moving your body, Kaisa.
00:20:35.000 --> 00:20:39.999
I want it to go away, why
does this happen to me?
00:20:40.000 --> 00:20:44.999
It’s unfair. Oh!
00:20:45.000 --> 00:20:49.999
My mother was emotionally incapable
00:20:50.000 --> 00:20:54.999
of dealing with my cancer in a direct way.
00:20:55.000 --> 00:20:59.999
I guess I was kind of
horrified by the whole thing.
00:21:00.000 --> 00:21:04.999
It seemed to me that if we got a camera
up, that somehow it would bring us
00:21:05.000 --> 00:21:09.999
together instead of each one
having to suffer in pain
00:21:10.000 --> 00:21:14.999
and then she mentioned
00:21:15.000 --> 00:21:19.999
something sensuous and
she got the idea about
00:21:20.000 --> 00:21:24.999
her friend with the boy constrictors.
She would call herself serpentessa,
00:21:25.000 --> 00:21:29.999
she was a belly dancer. They
clench you, they wrap around you
00:21:30.000 --> 00:21:34.999
they are constantly in motion.
For me, it was sexy.
00:21:35.000 --> 00:21:39.999
As adult I was not a very
00:21:40.000 --> 00:21:44.999
touchy feely kind of person, but after the
diagnosis I really allowed myself to be touched.
00:21:45.000 --> 00:21:49.999
I look at complementary therapies
two ways, relaxation techniques,
00:21:50.000 --> 00:21:54.999
massage therapy, acupuncture,
when people coming out of those
00:21:55.000 --> 00:21:59.999
having a treatment done, they feel better.
00:22:00.000 --> 00:22:04.999
The other side of this is can we
explain why… why this is making us
00:22:05.000 --> 00:22:09.999
feel better and what can you
do to augment and actually
00:22:10.000 --> 00:22:14.999
act as treatment for patient with cancer.
00:22:15.000 --> 00:22:19.999
Kasia did really wonderful
during chemotherapy.
00:22:20.000 --> 00:22:24.999
The drugs are not easy, the
drug called cisplatin involved
00:22:25.000 --> 00:22:29.999
with chemotherapy. This is a drug that is
really known for its nausea and vomiting
00:22:30.000 --> 00:22:34.999
uh… but she went through it really
extraordinarily. Taking advice and counsel
00:22:35.000 --> 00:22:39.999
from other physicians and having them tell
me what I need to do it’s an experience
00:22:40.000 --> 00:22:44.999
of being vulnerable, but it’s also
humbling. It was very… very healing
00:22:45.000 --> 00:22:49.999
for her to make up her mind that there were
certain things that she was going to do.
00:22:50.000 --> 00:22:54.999
I am ready. Okay… That’s
it, keep standing. Okay.
00:22:55.000 --> 00:22:59.999
[sil.]
00:23:00.000 --> 00:23:04.999
I was setting aside some of my requirement to
scientific proof because I was really trying to…
00:23:05.000 --> 00:23:09.999
to save my life and I was willing to
step outside the uh… the boundaries
00:23:10.000 --> 00:23:14.999
of… of mainstream medicine
in order to do that.
00:23:15.000 --> 00:23:19.999
I followed a diet that was
devised by an anesthesiologist
00:23:20.000 --> 00:23:24.999
who now specializes in nutrition for oncology
patients which I followed strictly for two years.
00:23:25.000 --> 00:23:29.999
It was high in omega-3 fatty acids low
00:23:30.000 --> 00:23:34.999
and omega-6 fatty acids, high in
antioxidant fruits and vegetables,
00:23:35.000 --> 00:23:39.999
the soy, lowing red meat, I eliminated milk
00:23:40.000 --> 00:23:44.999
and I eliminated wheat from my diet.
I’ve been making
00:23:45.000 --> 00:23:49.999
the shake for a year now and I’m also on
chemotherapy for a large part of the last year.
00:23:50.000 --> 00:23:54.999
And I have never had any mouth sores
nor have any serious GI problems.
00:23:55.000 --> 00:23:59.999
I don’t know if it’s because of the supplements
I’m taking, but they’re surely not hurting me.
00:24:00.000 --> 00:24:04.999
Mmm… Ultra omega-3 fish oil,
00:24:05.000 --> 00:24:09.999
evening Primrose Oil,
multivitamin, calcium,
00:24:10.000 --> 00:24:14.999
Coenzyme II, vitamin B,
vitamin E, vitamin A
00:24:15.000 --> 00:24:19.999
also I take Celebrex, which is reported
to have anti-angiogenesis properties
00:24:20.000 --> 00:24:24.999
mainly to help prevent blood vessel
growth to tumors cells that was
00:24:25.000 --> 00:24:29.999
recommended by my oncologist.
So that’s my morning routine.
00:24:30.000 --> 00:24:34.999
The more positive results I got
from following my intuition,
00:24:35.000 --> 00:24:39.999
the less proof I needed. Kasia
started out in music very early on,
00:24:40.000 --> 00:24:44.999
I thought she was seven or eight and
throughout her life she’s perfected
00:24:45.000 --> 00:24:53.000
her violin playing and taking it very seriously. After I’m long gone we are
gonna understand how the immune system works and how the body heals itself.
00:24:55.000 --> 00:24:59.999
Playing the violin, being
creative mattered a lot.
00:25:00.000 --> 00:25:04.999
Doing film did make Kasia
00:25:05.000 --> 00:25:09.999
feel better about herself
in important ways.
00:25:10.000 --> 00:25:14.999
I had a second operation
two days ago to uh… access
00:25:15.000 --> 00:25:19.999
my current condition. I’ve been
walking since yesterday. Yeah? Okay.
00:25:20.000 --> 00:25:24.999
This time around the same incision was made as
before right down the middle from my belly button
00:25:25.000 --> 00:25:29.999
down to my pubic bone. I had chemotherapy
00:25:30.000 --> 00:25:34.999
for six months and also that
residual cancer disappeared.
00:25:35.000 --> 00:25:39.999
The big tumor in my pelvis which is about
seven centimeters in diameter had liquefied,
00:25:40.000 --> 00:25:44.999
but there is still these three
to four millimeter nodules
00:25:45.000 --> 00:25:49.999
in my intestines. Ovarian cancer
00:25:50.000 --> 00:25:54.999
is the most lethal gynecologic
cancer and it’s not often
00:25:55.000 --> 00:25:59.999
that there’s an opportunity to make
an early diagnosis. It’s very hard
00:26:00.000 --> 00:26:04.999
to prove failure to
diagnose ovarian cancer.
00:26:05.000 --> 00:26:09.999
I went to eight different law firms before
I found a lawyer who would take my case.
00:26:10.000 --> 00:26:14.999
Eddy Milstein took the case
00:26:15.000 --> 00:26:19.999
because he thought he could win the case. I believe because
we had this ultrasound report which was incriminating.
00:26:20.000 --> 00:26:24.999
We have to prove two things in this case,
00:26:25.000 --> 00:26:29.999
one is that we have to prove that a doctor did
something wrong the… the phrase that we use is
00:26:30.000 --> 00:26:34.999
that he departed from the accepted standard
of medical care. You know, the risk
00:26:35.000 --> 00:26:39.999
of not discovering that it’s malignant
disease is the progression of the disease
00:26:40.000 --> 00:26:44.999
which brings me to the second thing we have to prove,
we have to prove that as a consequence of the delay
00:26:45.000 --> 00:26:49.999
in the diagnosis that you were harmed, now how you harmed?
You were harmed by the fact that you walked around
00:26:50.000 --> 00:26:54.999
uh… for another either 7 to 9 or 10 months
00:26:55.000 --> 00:26:59.999
with a disease progressing. Had the
disease been detected earlier,
00:27:00.000 --> 00:27:04.999
it would have increased your survival rate,
it would have reduced the mortality rate
00:27:05.000 --> 00:27:09.999
of the disease and hopefully had it been detected
earlier, you would have been entirely cured.
00:27:10.000 --> 00:27:14.999
Yeah. We have all the elements
of a successful case.
00:27:15.000 --> 00:27:19.999
So uh… I want to wish you the best of luck and I’ll
do everything I can to see to it that your case
00:27:20.000 --> 00:27:24.999
is concluded on a very successful
note, so I can get paid.
00:27:25.000 --> 00:27:29.999
Winning a lawsuit was of indication
00:27:30.000 --> 00:27:34.999
it made me feel like I had been right, when
I said that the diagnosis had been missed
00:27:35.000 --> 00:27:39.999
and it gave me the money to enable
me to make this film project.
00:27:40.000 --> 00:27:44.999
[music]
00:27:45.000 --> 00:27:49.999
On the heels of 9/11, my mother and I began
shooting a film about my determination
00:27:50.000 --> 00:27:54.999
to become a tri-athlete
inspired by Lance Armstrong.
00:27:55.000 --> 00:27:59.999
Between the movement of the (inaudible)
00:28:00.000 --> 00:28:04.999
9/11 this kind of hysteria
of the health club,
00:28:05.000 --> 00:28:09.999
you know, people going back and forth… back
and forth… back and forth that was your time,
00:28:10.000 --> 00:28:14.999
my time and the 9/11 time.
00:28:15.000 --> 00:28:19.999
What if I should ride into the sun what happens
then? Nine-eleven also marked the passage of a year
00:28:20.000 --> 00:28:24.999
since my diagnosis. My CA-125
had returned to normal
00:28:25.000 --> 00:28:29.999
and although I continued to take Taxol,
I was on the road to being cancer free.
00:28:30.000 --> 00:28:34.999
To celebrate I bought a video camera.
00:28:35.000 --> 00:28:39.999
(inaudible) your counts?
The C125 is all normal.
00:28:40.000 --> 00:28:44.999
Good, grab my arm. Dan Smith
and Ursula Matulonis, I mean,
00:28:45.000 --> 00:28:49.999
they are my Gods really. You know, I just think that
this thing is sort of bring itself up what it is.
00:28:50.000 --> 00:28:54.999
Great, maybe I’m cured. I
think that the issue of being
00:28:55.000 --> 00:28:59.999
cured is… is illusive concept. But I
think the issue of chronic disease
00:29:00.000 --> 00:29:04.999
is being able to live your life taking
treatment is really who you are right now.
00:29:05.000 --> 00:29:09.999
[sil.] I think Kasia would say that
00:29:10.000 --> 00:29:14.999
prior to getting the carcinoma
she never became as comfortable
00:29:15.000 --> 00:29:19.999
with her own sexual identity
as she might have wished.
00:29:20.000 --> 00:29:24.999
Because of this surgery she wasn’t gonna
be able to do that work in the same way.
00:29:25.000 --> 00:29:29.999
The area of most confusion for her was
00:29:30.000 --> 00:29:34.999
how do I explore my femininity at this
stage of my life, what do I do to do that?
00:29:35.000 --> 00:29:39.999
Should I change how I look, should I
try to conduct myself differently?
00:29:40.000 --> 00:29:44.999
What would being feminine be for me?
00:29:45.000 --> 00:29:49.999
I am doing a triathlon on June 29th.
You know triathlon? It’s…
00:29:50.000 --> 00:29:54.999
I don’t speak triathlon,
00:29:55.000 --> 00:29:59.999
but yes, I know… yes, I know
triathlon, it’s like the Iron Man.
00:30:00.000 --> 00:30:04.999
I told Julie as time went on that I wanted to have
an open relationship where I would be able to
00:30:05.000 --> 00:30:09.999
have my relationship with her but
also explore my feelings for men.
00:30:10.000 --> 00:30:14.999
She was I guess crestfallen comes to mind.
00:30:15.000 --> 00:30:19.999
I couldn’t have asked for a better
partner going through illness. She was
00:30:20.000 --> 00:30:24.999
unfailingly supportive and present
for me, you know, I would be
00:30:25.000 --> 00:30:29.999
in the hospital and she would be sleeping on the floor
next to me. I have definitely noticed that women,
00:30:30.000 --> 00:30:34.999
who are diagnosed with cancer, can sometimes
have a change in their relationship,
00:30:35.000 --> 00:30:39.999
have a dissolving of their relationships
when patient (inaudible).
00:30:40.000 --> 00:30:44.999
So it’s a real test of… of a relationship?
A real test of relationship.
00:30:45.000 --> 00:30:49.999
I am letting myself play, you know, so I
don’t know how long I am going to be around.
00:30:50.000 --> 00:30:58.000
[music]
00:31:00.000 --> 00:31:04.999
Congratulations, Katherine Clark!
00:31:05.000 --> 00:31:09.999
I was on a world (inaudible) I
was on a like a moving train
00:31:10.000 --> 00:31:14.999
and I was being swept along.
00:31:15.000 --> 00:31:19.999
[music]
00:31:20.000 --> 00:31:24.999
And I just decided to follow where
it let me in, it wasn’t (inaudible)
00:31:25.000 --> 00:31:29.999
it wasn’t planned, it
was just an evolution.
00:31:30.000 --> 00:31:34.999
[music]
00:31:35.000 --> 00:31:39.999
I starting to actually to record moments
00:31:40.000 --> 00:31:44.999
as they are happening,
has given me a certain
00:31:45.000 --> 00:31:49.999
sense of control over the passage of time.
00:31:50.000 --> 00:31:54.999
[music]
00:31:55.000 --> 00:31:59.999
This sort of delicately saying over my head and so I’m running around
like a chicken with my head cut off trying to do so many things
00:32:00.000 --> 00:32:04.999
like even making this film.
00:32:05.000 --> 00:32:09.999
Trying to document my experience as
a way of trying to hold on to it.
00:32:10.000 --> 00:32:18.000
[music]
00:32:20.000 --> 00:32:24.999
This connection she has with
the Manhattan String Quartet
00:32:25.000 --> 00:32:29.999
has meant a great deal to her.
00:32:30.000 --> 00:32:34.999
I think at one time, she thought that
she might even do music professionally
00:32:35.000 --> 00:32:39.999
and I think she has come to realize that
that’s even more competitive than filmmaking.
00:32:40.000 --> 00:32:48.000
[music]
00:32:50.000 --> 00:32:54.999
I’m living in Boston and I
am going to film school.
00:32:55.000 --> 00:32:59.999
I found this apartment in Craigslist.
(inaudible) from where I came from.
00:33:00.000 --> 00:33:04.999
It’s a lot of security to let go off.
00:33:05.000 --> 00:33:09.999
It wasn’t giving up real estate it was
giving up the internal experience
00:33:10.000 --> 00:33:14.999
of what that place had been, so it
wasn’t easy. Losing my relationship
00:33:15.000 --> 00:33:19.999
with Julie was bittersweet. It was sweet
00:33:20.000 --> 00:33:24.999
in that I could have adventures. I was
thinking about sucking up as much
00:33:25.000 --> 00:33:29.999
experience as I possibly could, not
knowing how long I was going to be alive.
00:33:30.000 --> 00:33:34.999
The bitter side is, by the time
I realized I… I had lost her.
00:33:35.000 --> 00:33:39.999
I also realized that I missed her terribly.
00:33:40.000 --> 00:33:44.999
Now that I have my health
it seems that my health
00:33:45.000 --> 00:33:49.999
is here to stay. I want to see
what I can do with myself
00:33:50.000 --> 00:33:54.999
and how far can I go.
Well, I… I am getting a…
00:33:55.000 --> 00:33:59.999
a crash course in art making here. This isn’t
apprenticeship. I feel like I have risen
00:34:00.000 --> 00:34:04.999
from this intense focus on the
physical being and now I am wrestling
00:34:05.000 --> 00:34:09.999
with the psychological and
spiritual aspects of life
00:34:10.000 --> 00:34:14.999
which I am finding to
be equally challenging.
00:34:15.000 --> 00:34:19.999
I have to say that I am still
afraid, still fearful.
00:34:20.000 --> 00:34:24.999
We’ll see what… what the next chapter
is going to be. It’s your script
00:34:25.000 --> 00:34:29.999
and your sail boat and you
got the hands on the rudder.
00:34:30.000 --> 00:34:34.999
I just want to wish you Godspeed.
00:34:35.000 --> 00:34:39.999
So I had my blood drawn up about three
weeks ago. And what was the conclusion?
00:34:40.000 --> 00:34:44.999
C125 is still like around eight.
I went to my fifty year
00:34:45.000 --> 00:34:49.999
of remission. Mm-hmm.
00:34:50.000 --> 00:34:54.999
What do you think? Do you think I beat it?
I think so, yeah.
00:34:55.000 --> 00:34:59.999
Dr. Smith did his rectal exam on me
00:35:00.000 --> 00:35:04.999
in a routine checkup. And suddenly I looked
down on the glove was tarry… tarry stool.
00:35:05.000 --> 00:35:09.999
Indicating there was likely a recurrence
of my cancer in the intestine.
00:35:10.000 --> 00:35:14.999
And I felt the mass. He was
shocked and I was more shocked.
00:35:15.000 --> 00:35:19.999
Then, I went to see my medical
oncologist back in Boston Dr. Matulonis.
00:35:20.000 --> 00:35:24.999
Is it… is it hospital I can just
talk to one first? Of course.
00:35:25.000 --> 00:35:29.999
Okay, that would make it I… I am not (inaudible) camera
I gotta say it… That’s fine. I… I respect that. Okay.
00:35:30.000 --> 00:35:38.000
[sil.]
00:35:40.000 --> 00:35:44.999
Well, my father just wrecked his car after we
went to Dana Farber and I received a diagnosis
00:35:45.000 --> 00:35:49.999
of recurrent cancer. It’s been exactly
six years since my initial diagnosis.
00:35:50.000 --> 00:35:54.999
Matulonis tells me that
on CAT scan the area
00:35:55.000 --> 00:35:59.999
where my cervix resides has a large
by two or three centimeters.
00:36:00.000 --> 00:36:04.999
So how do you feel about this?
00:36:05.000 --> 00:36:09.999
Angry. I actually surprised I am
surprised after six years that…
00:36:10.000 --> 00:36:14.999
that this will sneak back up on me and
bite me again. Certainly, right now
00:36:15.000 --> 00:36:19.999
you are in a very emotional situation.
I am deeply unhappy.
00:36:20.000 --> 00:36:24.999
[sil.]
00:36:25.000 --> 00:36:29.999
The next step is for me to deal with my feelings about
it… it because I… I am not rational at the moment
00:36:30.000 --> 00:36:34.999
I am very averse to being mutilated
further. Surgery is mutilating.
00:36:35.000 --> 00:36:39.999
Get the hammer that’s a
good shot get the hammer.
00:36:40.000 --> 00:36:44.999
I feel like running away. Uh… The phrase I’ve using
I feel like a bear with its foot caught in a trap.
00:36:45.000 --> 00:36:49.999
There are city
00:36:50.000 --> 00:36:54.999
sixty beaches that you can
surf on in Puerto Rico.
00:36:55.000 --> 00:36:59.999
That’s where I wanna go. When
something comes before Kasia
00:37:00.000 --> 00:37:04.999
that she doesn’t like she says in any
one of a variety of ways \"No, way
00:37:05.000 --> 00:37:09.999
not happening and not doing it I’m out of here.\" Can you
show me on the map because they have… Other people can say
00:37:10.000 --> 00:37:14.999
so it’s objectionable, but I’ll deal.
00:37:15.000 --> 00:37:19.999
And here are the two things
and this is fluid filled ray
00:37:20.000 --> 00:37:24.999
and this is more solid. Now my suspicion
00:37:25.000 --> 00:37:29.999
is gonna be hopefully just a little fibroid or something.
But this is not something you felt before Dan?
00:37:30.000 --> 00:37:34.999
Totally not, N-O. So Dan,
can you level to me?
00:37:35.000 --> 00:37:39.999
I’m sure. I want you to tell
me what you think it is?
00:37:40.000 --> 00:37:44.999
I think from… from your point of view of wanting
a durable response from the ovarian cancer,
00:37:45.000 --> 00:37:49.999
you should want to know what’s in there.
00:37:50.000 --> 00:37:54.999
You know what’s that… that hard lump
what’s that other lump? But I can tell you
00:37:55.000 --> 00:37:59.999
by exam this is a new finding (inaudible)
and tarry stools, something changed.
00:38:00.000 --> 00:38:04.999
I have to think about
00:38:05.000 --> 00:38:09.999
whether I want to go through surgery again, no?
Exactly. How long if a wait is acceptable?
00:38:10.000 --> 00:38:14.999
I would like to deal with it quickly.
00:38:15.000 --> 00:38:19.999
I guess I’m not going to go Puerto
Rico then. I was gonna go surfing.
00:38:20.000 --> 00:38:24.999
I think this is a real nasty (inaudible).
Oh, yeah, this is definitely nasty.
00:38:25.000 --> 00:38:29.999
This is definitely…
definitely unmade my day.
00:38:30.000 --> 00:38:34.999
I have a great sense of urgency about life.
00:38:35.000 --> 00:38:39.999
I am happiest it seems when I am emotion.
00:38:40.000 --> 00:38:44.999
[music]
00:38:45.000 --> 00:38:49.999
What motion does for Kasia? It
gives her a kind of concentration
00:38:50.000 --> 00:38:54.999
which prevents other things
from coming into her mind.
00:38:55.000 --> 00:38:59.999
And there is not how does he feel about me?
How does she feel about me?
00:39:00.000 --> 00:39:04.999
How lonely am I? I have to
say I am drawn to danger.
00:39:05.000 --> 00:39:09.999
Sometimes I need that to really feel alive.
00:39:10.000 --> 00:39:14.999
Yeah… yeah… yeah… yeah, oh… There is something about
our relationship that’s kind of distinctive I think.
00:39:15.000 --> 00:39:19.999
Life and death matters,
you have been my doctor.
00:39:20.000 --> 00:39:24.999
We have been friends for a long time.
00:39:25.000 --> 00:39:29.999
Tell me why you’re happy? I think
a lot of it has to do with
00:39:30.000 --> 00:39:34.999
not running around, I think
you’re doing right now
00:39:35.000 --> 00:39:39.999
and I think that’s helping me a lot.
00:39:40.000 --> 00:39:44.999
In the fall, I underwent
a series of studies
00:39:45.000 --> 00:39:49.999
uh… colonoscopy and upper endoscopies,
which did not locate any tumors.
00:39:50.000 --> 00:39:54.999
I was very
00:39:55.000 --> 00:39:59.999
resistant to having a third surgery
and I said \"How about we follow
00:40:00.000 --> 00:40:04.999
my disease with serial cast scans
every month for a few months.\"
00:40:05.000 --> 00:40:09.999
Six months later another colonoscopy
and another upper endoscopy,
00:40:10.000 --> 00:40:14.999
which again did not locate the tumors.
My stools remain black.
00:40:15.000 --> 00:40:19.999
(inaudible). Finally I had a test
00:40:20.000 --> 00:40:24.999
where I swallowed a pill with a camera
attached call a capsule endoscopy test.
00:40:25.000 --> 00:40:29.999
So they are giving me a pill that
will take video images as it travels
00:40:30.000 --> 00:40:34.999
through the entire length of the small
intestine. Turn off the light on.
00:40:35.000 --> 00:40:39.999
(inaudible) put these censors on you.
00:40:40.000 --> 00:40:44.999
They are attached to a data recorder
and you wear that for eight hours
00:40:45.000 --> 00:40:49.999
and the pill cam that you have swallowed when
you told that end and before you swallowed
00:40:50.000 --> 00:40:54.999
it is taking a picture of you and then you
swallow the camera down and it does its thing.
00:40:55.000 --> 00:40:59.999
I just swallowed a fucking camera.
00:41:00.000 --> 00:41:04.999
And two hours from now you can go
ahead and have some clear liquids,
00:41:05.000 --> 00:41:09.999
tea without milk, (inaudible), Sprite.
How about a martini?
00:41:10.000 --> 00:41:14.999
Four hours after you swallow the camera,
you can go ahead and have a light lunch
00:41:15.000 --> 00:41:19.999
half a sandwich some soup.
00:41:20.000 --> 00:41:24.999
And then, you gonna come back
here umm… in eight hours
00:41:25.000 --> 00:41:29.999
and we will un-hook from the
equipment and off you go.
00:41:30.000 --> 00:41:34.999
What I showed you before was at an hour
into the exam. Now that’s three hours,
00:41:35.000 --> 00:41:39.999
so right in the mid bowel and you see this area and
there’s a clear cut a little bit of blood here.
00:41:40.000 --> 00:41:44.999
You see that? Yes. So red blood
00:41:45.000 --> 00:41:49.999
and it’s not 100% clear
actually what the cause of this
00:41:50.000 --> 00:41:54.999
uh… bleeding is. The uh…
differential diagnosis
00:41:55.000 --> 00:41:59.999
of that are umm… typically
benign small bowel tumors
00:42:00.000 --> 00:42:04.999
such as some leiomyomas, GI stromal tumors.
00:42:05.000 --> 00:42:09.999
It’s also could be metastatic disease
uh… from ovarian cancer that is
00:42:10.000 --> 00:42:14.999
implanted into the wall of the bowel and breaking
through. I mean, if its metastatic cancer
00:42:15.000 --> 00:42:19.999
it could get bigger and the erosion could
get bigger and the bleeding could get more?
00:42:20.000 --> 00:42:24.999
Yeah. So the traditional approach
00:42:25.000 --> 00:42:29.999
to this would be a surgeon doing a laparotomy, open you
up feeling the intestine, see if they can find the spot
00:42:30.000 --> 00:42:34.999
and if they can ressecting that area.
I fended off surgery
00:42:35.000 --> 00:42:39.999
for six months there’s this PET scan
that shows increased metabolic activity
00:42:40.000 --> 00:42:44.999
in the pelvis and also around my abdomen.
I am afraid of repeated
00:42:45.000 --> 00:42:49.999
abdominal operations and, you know,
increasing numbers of the adhesions
00:42:50.000 --> 00:42:54.999
and scarring inside my abdomen
in addition my CA-125 has
00:42:55.000 --> 00:42:59.999
edged up to 21, still in the normal
range but it’s been a 10 for the last
00:43:00.000 --> 00:43:04.999
several six years and I could choose to do nothing I
could choose just live with… live with my situation.
00:43:05.000 --> 00:43:09.999
[music]
00:43:10.000 --> 00:43:14.999
When I was operated on finally
00:43:15.000 --> 00:43:19.999
the source of bleeding was metastatic tumors which
eroded into blood vessels causing internal bleeding,
00:43:20.000 --> 00:43:24.999
so there was a recurrence of the cancer.
00:43:25.000 --> 00:43:29.999
I am doing a little bit of curling up, and
regressing and feeling sorry for myself.
00:43:30.000 --> 00:43:34.999
I am absolutely not ready to die.
I don’t feel I have done
00:43:35.000 --> 00:43:39.999
what I wanted to do in my life. Kasia has
been intermittently conflicted about
00:43:40.000 --> 00:43:44.999
reaching out to other people. How do you develop relationships
when you are not sure how long you are gonna be alive?
00:43:45.000 --> 00:43:49.999
I… I have had some boyfriends
it’s not working out that well
00:43:50.000 --> 00:43:54.999
probably because I wasn’t in love. Really
I started looking for deeper connections
00:43:55.000 --> 00:43:59.999
with other people especially
with my family of origin.
00:44:00.000 --> 00:44:04.999
After my surgery last spring,
my father gave me rosebushes
00:44:05.000 --> 00:44:09.999
for my birthday and he put the rose
bushes in for me. That was a very
00:44:10.000 --> 00:44:14.999
tender and caring thing for him to do.
00:44:15.000 --> 00:44:19.999
When I came back to Boston uh… I
started thinking about Jackie,
00:44:20.000 --> 00:44:24.999
not only as my sister but
as the impetus for why
00:44:25.000 --> 00:44:29.999
I went to medical school in the
first place. And I felt that
00:44:30.000 --> 00:44:34.999
I was now in a position where I could
start to make a difference in her life.
00:44:35.000 --> 00:44:39.999
I came home from the hospital
and I was pretty weak
00:44:40.000 --> 00:44:44.999
and uh… I use gardening as a
way to build my strength back.
00:44:45.000 --> 00:44:49.999
I brought my sister, I went in to the apartment, she
helped me dig up the garden and put in vegetables.
00:44:50.000 --> 00:44:54.999
Here is this person you
have an intense bond with
00:44:55.000 --> 00:44:59.999
and who you think you can help and
who can be enormously… enormously
00:45:00.000 --> 00:45:04.999
helpful to you. Your face doesn’t
look too good, the rest looks great.
00:45:05.000 --> 00:45:09.999
Jackie herself is a very
talented artist, but still
00:45:10.000 --> 00:45:14.999
her life is rather narrowly defined.
Do you think it looks like you?
00:45:15.000 --> 00:45:19.999
I think it has a… it has a feel of me.
00:45:20.000 --> 00:45:24.999
Kasia has opened her to much more
interesting times of activities.
00:45:25.000 --> 00:45:29.999
[music]
00:45:30.000 --> 00:45:34.999
I am also getting closer to my friend Erika, who I met at a
party a couple of years ago. First you gonna wash your face…
00:45:35.000 --> 00:45:39.999
When I am with her I feel comfortable and
playful. (inaudible) rub with your finger after…
00:45:40.000 --> 00:45:44.999
And she is given me lots of new
ways to approach my femininity.
00:45:45.000 --> 00:45:49.999
Frankly, I am insecure.
00:45:50.000 --> 00:45:54.999
I feel a lot of insecurity because
I have a chronic illness.
00:45:55.000 --> 00:45:59.999
So what do you think of my
new uh… filmmaking career?
00:46:00.000 --> 00:46:04.999
Really! I can’t wait to see the final product
actually, you know, how it turns out. I think if
00:46:05.000 --> 00:46:09.999
she had pursued one of her
particular interests with more
00:46:10.000 --> 00:46:14.999
a single mindedness I think she might have
found… found more fulfillment in her life.
00:46:15.000 --> 00:46:19.999
Do you understand that I am… I am toying with
a future in the arts? I don’t really care.
00:46:20.000 --> 00:46:24.999
I want you just to point your boat
00:46:25.000 --> 00:46:29.999
and start sailing… Start? What…
What do you mean start and I’m not
00:46:30.000 --> 00:46:34.999
I have began? Well, you are
sailing but you are also at rest.
00:46:35.000 --> 00:46:39.999
Make new film is a creative act.
Her mother is a creative person.
00:46:40.000 --> 00:46:44.999
Kasia chose to become a
physician more like being
00:46:45.000 --> 00:46:49.999
a scientist the way her
father is a scientist.
00:46:50.000 --> 00:46:54.999
How do you integrate within yourself
those aspects of the people
00:46:55.000 --> 00:46:59.999
that you love in a way that will make them
and you proud of who you have become.
00:47:00.000 --> 00:47:04.999
In the face of perhaps not living
very long, it was a chance
00:47:05.000 --> 00:47:09.999
to try to finally in some way
be uh… what both of her parents
00:47:10.000 --> 00:47:14.999
and she could appreciate.
00:47:15.000 --> 00:47:19.999
I think the 50th birthday
00:47:20.000 --> 00:47:24.999
is a momentous of anybody’s life,
but for Kasia to have survived
00:47:25.000 --> 00:47:29.999
almost eight years from a diagnosis
of very severe ovarian cancer
00:47:30.000 --> 00:47:34.999
is a remarkable almost
miraculous and I hope she sees
00:47:35.000 --> 00:47:39.999
many… many more. I still want to be,
you know, 15 years younger not sick.
00:47:40.000 --> 00:47:44.999
I can’t be that. The chemotherapy finished
00:47:45.000 --> 00:47:49.999
in November of 2007. Unfortunately
in the spring time,
00:47:50.000 --> 00:47:54.999
my blood tests showed evidence of recurrence,
of course I have started thinking about
00:47:55.000 --> 00:47:59.999
having to go for more treatment
and I became highly anxious.
00:48:00.000 --> 00:48:04.999
Kasia is subject to
experiences of loneliness
00:48:05.000 --> 00:48:09.999
that are profoundly painful
and perhaps to some extant
00:48:10.000 --> 00:48:14.999
she feels as though the
dying process would be
00:48:15.000 --> 00:48:19.999
analogous to those
experiences of loneliness.
00:48:20.000 --> 00:48:24.999
I went on antidepressant called Celexa
and I stayed on that antidepressant
00:48:25.000 --> 00:48:29.999
for about six to eight months. And I think
it dulled some of my emotional extremes.
00:48:30.000 --> 00:48:34.999
It’s very important for Kaisa to try to
00:48:35.000 --> 00:48:39.999
not only have the normal
feelings of joy or excitement
00:48:40.000 --> 00:48:44.999
uh… but she also wants
to have sexual feelings.
00:48:45.000 --> 00:48:49.999
Okay, so I’m gonna swim (inaudible)
Walden pond. What do you say?
00:48:50.000 --> 00:48:54.999
Good Luck. Okay, I will see you on the other side. Okay,
I will be there. Okay, bye. I stopped taking Celexa
00:48:55.000 --> 00:48:59.999
uh… soon after I started
dating someone this summer
00:49:00.000 --> 00:49:04.999
because it shutdown my sexual response
00:49:05.000 --> 00:49:09.999
and that was frustrated by that.
Being in a relationship
00:49:10.000 --> 00:49:14.999
is comforting to me. This
person, his name is Joe
00:49:15.000 --> 00:49:19.999
uh… he is very kind, he laughs at my jokes.
00:49:20.000 --> 00:49:24.999
I confessed to him
00:49:25.000 --> 00:49:29.999
that I had this cancer over dinner
00:49:30.000 --> 00:49:34.999
with the knowledge that he might choose to
end the relationship as a result of that.
00:49:35.000 --> 00:49:39.999
And he said it doesn’t change a thing.
Well, this is my
00:49:40.000 --> 00:49:44.999
20th CAT scan here at Dana-Farber/Brigham
and Women’s complex.
00:49:45.000 --> 00:49:49.999
I have to drink this whole bottle
of nasty tasting apple juice.
00:49:50.000 --> 00:49:54.999
Nasty shit. Hi, Joe! So happy to see you.
Thank you. Nostrovia.
00:49:55.000 --> 00:49:59.999
Your main oncologist
00:50:00.000 --> 00:50:04.999
uh… who manages ovarian cancer felt
that in your particular situation
00:50:05.000 --> 00:50:09.999
you may benefit from a particular drug currently
in clinical trial its inhibitor of a molecule
00:50:10.000 --> 00:50:14.999
called PI3kinase, I hope of course is we can
find the magic bullet that would target
00:50:15.000 --> 00:50:19.999
the one pathway that will lead
to tumor not growing and hopes
00:50:20.000 --> 00:50:24.999
to kill every last cancer cell. If we can
achieve that we are hoping that it can
00:50:25.000 --> 00:50:29.999
stabilize things to make your condition more of a
chronic illness that requires some maintenance therapy.
00:50:30.000 --> 00:50:34.999
I have managed to stay alive
00:50:35.000 --> 00:50:39.999
for eight years, that’s true.
00:50:40.000 --> 00:50:44.999
There’s (inaudible) staying alive
and thriving and feeling exuberant
00:50:45.000 --> 00:50:49.999
and joyful that one’s life.
00:50:50.000 --> 00:50:54.999
I’m not feeling exuberant now.
00:50:55.000 --> 00:50:59.999
I feel like a stranger in a Strange Land.
00:51:00.000 --> 00:51:04.999
[music]
00:51:05.000 --> 00:51:09.999
I find it extremely annoying to have to go
through this over and over again. I have been
00:51:10.000 --> 00:51:14.999
incredibly afraid, incredibly
at times terrified
00:51:15.000 --> 00:51:19.999
about what it is that is going on with me.
I am really thinking about
00:51:20.000 --> 00:51:24.999
death seriously for the first
time this has been ever since
00:51:25.000 --> 00:51:29.999
my abdominal symptoms have
become so prominent. It might be
00:51:30.000 --> 00:51:34.999
uh… gas pains, it might be cramping,
it might be nausea or vomiting.
00:51:35.000 --> 00:51:39.999
I was in a phase one with a PI3kinase inhibitor
and they took me off after six months
00:51:40.000 --> 00:51:44.999
because they found two lesions
that hadn’t been there before.
00:51:45.000 --> 00:51:49.999
There is a part of me that feels like I still
can beat this illness through athletics,
00:51:50.000 --> 00:51:54.999
through sheer bullheadedness
and fortitude that I can just
00:51:55.000 --> 00:51:59.999
machete my way out of this
corner that I find myself it.
00:52:00.000 --> 00:52:04.999
[sil.]
00:52:05.000 --> 00:52:09.999
Well, I’m here at Alta for
a reunion of ski to live
00:52:10.000 --> 00:52:14.999
with Christian Almer and her Felicity
coaches. Ski to live is a ski clinic
00:52:15.000 --> 00:52:19.999
for avid skiers to improve technique and
also uh… she teaching them philosophy.
00:52:20.000 --> 00:52:24.999
Would you like to speak to me cancer?
00:52:25.000 --> 00:52:29.999
Why don’t you ask me some questions? You cause me
pain you want me to have that experience you care?
00:52:30.000 --> 00:52:34.999
If… if I don’t cause you
pain you cause your pain.
00:52:35.000 --> 00:52:39.999
I am just here. I can either
be a great teacher to you
00:52:40.000 --> 00:52:44.999
or nothing at all. What do you have to teach
me? Whatever you are willing to learn.
00:52:45.000 --> 00:52:49.999
Willing to learn but I am tired of…
00:52:50.000 --> 00:52:54.999
I am tired of some of the things you been teaching me. It’s
been too much. I get that you’re trying to get rid of me
00:52:55.000 --> 00:52:59.999
as best as you can. No, I… I acknowledge
00:53:00.000 --> 00:53:04.999
that you’re inside of me, but I just would
like you to stay behave… behave yourself
00:53:05.000 --> 00:53:09.999
and not try to take over my digestive
system which is what has been going on…
00:53:10.000 --> 00:53:14.999
And then that must be very frustrating…
It’s frustrating, its… Yes, it’s…
00:53:15.000 --> 00:53:19.999
its very scary and beyond frustrating.
There are no words to describe
00:53:20.000 --> 00:53:24.999
what it is, but you have invaded my
intestines and I don’t appreciate it.
00:53:25.000 --> 00:53:29.999
Okay. Oh, I am here
00:53:30.000 --> 00:53:34.999
it’s nice to meet you. It’s nice to
have conversation with you. Screw you!
00:53:35.000 --> 00:53:39.999
How about the awkward?
00:53:40.000 --> 00:53:44.999
I’m in between treatment so they were
offering a phase two trial to me.
00:53:45.000 --> 00:53:53.000
[music]
00:53:55.000 --> 00:53:59.999
They tested for receptors and I got a call
I was skiing on the side of a mountain.
00:54:00.000 --> 00:54:04.999
I’m sorry Dr Clark, but your
receptors are negative.
00:54:05.000 --> 00:54:09.999
[music]
00:54:10.000 --> 00:54:14.999
Even in… in the face of
evidence of advancing disease
00:54:15.000 --> 00:54:19.999
I am still thinking about how do I
get out of this box. To be honest,
00:54:20.000 --> 00:54:24.999
I kind of feel like a lamb going to slaughter right
now. I feel that nature is trying to take me down.
00:54:25.000 --> 00:54:29.999
And with my personality
I try to think about
00:54:30.000 --> 00:54:34.999
how can I uh… fight my way
out of this like… like
00:54:35.000 --> 00:54:39.999
uh… the proverbial gladiator in
the… in the Colosseum with a lion.
00:54:40.000 --> 00:54:44.999
Sometimes the gladiator wins.
00:54:45.000 --> 00:54:49.999
You know, when I left you
surgically the last time… Yeah.
00:54:50.000 --> 00:54:54.999
There were still lots of little (inaudible)
in there. Well, yeah, I have chronic disease.
00:54:55.000 --> 00:54:59.999
Ursula says she is worried about
me and wants me to start standard
00:55:00.000 --> 00:55:04.999
chemo with Carboplatin and something
until we decide what else to do.
00:55:05.000 --> 00:55:09.999
I’m not saying you do but if
you have a chronic disease
00:55:10.000 --> 00:55:14.999
if she prolonging the chronicity? It’s
more than just a chronic disease.
00:55:15.000 --> 00:55:19.999
It’s something that if it chose to
could umm… knock me off pretty fast.
00:55:20.000 --> 00:55:24.999
I got another GI bleeding and how do
you stop that? Okay… okay, so I guess
00:55:25.000 --> 00:55:29.999
my question sort of
theoretically is, is it proper
00:55:30.000 --> 00:55:34.999
to intervene when you have one
of those serious problems?
00:55:35.000 --> 00:55:39.999
Or is treatment why you
(inaudible) feeling pretty good
00:55:40.000 --> 00:55:44.999
going to stave off or delay or prevent some
of the problems? I don’t know the answers
00:55:45.000 --> 00:55:49.999
its one of these classic questions
you ask if this phase of… of… of…
00:55:50.000 --> 00:55:54.999
of treatment for a disease
you’ve had for such a long time.
00:55:55.000 --> 00:55:59.999
It’s also these… these
psychological components
00:56:00.000 --> 00:56:04.999
which, you know, as a doctor you always
wanna treat but as a patient you sort of
00:56:05.000 --> 00:56:09.999
uh… start to umm… kind of get…
00:56:10.000 --> 00:56:14.999
Tired… Pretty worn out with… Tired…
With going back to the cancer hospital.
00:56:15.000 --> 00:56:19.999
Yeah, I mean… You know identity
stamped on your forehead.
00:56:20.000 --> 00:56:24.999
So it’s like, \"Okay, do I get to live my
life now, do I get to have relationships,
00:56:25.000 --> 00:56:29.999
do I get to have like feel like a normal
person or do I have to feel like a patient
00:56:30.000 --> 00:56:34.999
all the time.\" Actually in medical care
00:56:35.000 --> 00:56:39.999
is what I received after my diagnosis from
my surgeon and my medical oncologist,
00:56:40.000 --> 00:56:44.999
and from a relationship with the
psychiatric over a long period of time.
00:56:45.000 --> 00:56:49.999
How do you feel? I feel great.
I have learned from them
00:56:50.000 --> 00:56:54.999
about how doctors give and maintain hope.
This helped me
00:56:55.000 --> 00:56:59.999
to maintain a positive outlook.
I think they learned
00:57:00.000 --> 00:57:04.999
about how resilient a human
being can be in the phase of
00:57:05.000 --> 00:57:09.999
umm… disease and… and radical
treatments for disease.
00:57:10.000 --> 00:57:14.999
You know, in my case music has
been very big and when I am
00:57:15.000 --> 00:57:19.999
deeply engrossed in playing
umm… at String Quartet.
00:57:20.000 --> 00:57:24.999
[music]
00:57:25.000 --> 00:57:29.999
I lose myself in the music and the
deceased isn’t there anymore for me.
00:57:30.000 --> 00:57:34.999
As human beings we feel happier when we
can take action when we don’t feel like
00:57:35.000 --> 00:57:39.999
we are at the mercy of circumstances.
00:57:40.000 --> 00:57:48.000
[music]
00:58:00.000 --> 00:58:04.999
Nature is so much bigger than me.
00:58:05.000 --> 00:58:09.999
It sort of puts me in my place, but in
a nice way, and I feel like I belong.
00:58:10.000 --> 00:58:14.999
[sil.]
00:58:15.000 --> 00:58:19.999
When she is swimming in Walden Pond.
It’s a kind of contentment
00:58:20.000 --> 00:58:24.999
that feels normal, and natural,
00:58:25.000 --> 00:58:29.999
and soothing and comfortable.
00:58:30.000 --> 00:58:34.999
It’s really important that
I keep stretching myself
00:58:35.000 --> 00:58:39.999
that I keep putting myself in challenging
situations in order to grow.
00:58:40.000 --> 00:58:44.999
That I keep reaching out
00:58:45.000 --> 00:58:49.999
to the world around me,
to people around me.
00:58:50.000 --> 00:58:54.999
There are people in my life who
are really thinking about me
00:58:55.000 --> 00:58:59.999
and who are not afraid to
go with me in this journey
00:59:00.000 --> 00:59:04.999
to this dark place… this
dark place of sickness
00:59:05.000 --> 00:59:09.999
and possibly death that it… it
doesn’t have to be a solo journey.
00:59:10.000 --> 00:59:14.999
[music]
00:59:15.000 --> 00:59:19.999
One of my favorite phrases is uh… \"Life
is a journey, not a destination and it’s…
00:59:20.000 --> 00:59:24.999
it’s to part take in the
journey is life.\" (inaudible)
00:59:25.000 --> 00:59:29.999
courageous I think that my
(inaudible) your persistence,
00:59:30.000 --> 00:59:34.999
and your hopes and your willingness to…
00:59:35.000 --> 00:59:39.999
to uh… modify yourself
has to play the role.
00:59:40.000 --> 00:59:44.999
But on the other hand, you know, a hundred years from
now when we are up on that cloud I do want to talk you
00:59:45.000 --> 00:59:49.999
and say \"What was it that you had?\"
00:59:50.000 --> 00:59:58.000
[music]