The courage to live with radical uncertainty

When your future is uncertain, how do you keep moving forward? In this courageous talk, oncologist and cancer survivor Shekinah Elmore shares how she embraced life after a rare genetic diagnosis -- and explains why she believes doctors have a duty to help their patients learn to live with radical uncertainty.

What's the worst that could happen?

Almost exactly 10 years ago,

I was sitting in an exam room
that was way too cold

waiting to meet my new oncologist.

I was terrified.

Even though my partner at the time
was sitting right by my side,

I felt completely alone.

I had just been diagnosed
with breast cancer,

and it seemed at the time

that a single bright spot
on a scan of my right lung

meant that the cancer had already spread.

I had metastatic breast cancer.

I had no medical training at this point,

but I knew what it meant if it were true:

incurable breast cancer.

Terminal breast cancer.

I was 27 years old,

had just been accepted to medical school,

and I wondered if I was already
at the end of my life.

My new oncologist was not a warm person.

She dealt in simple facts,

as many brilliant physicians do.

"Our body is made up
of cells," she started.

I stopped her.

"I'm starting medical school soon.

I know."

Instead of taking this as a signal
to go backward, to start again,

she went forward.

She said that I would need
to start on chemotherapy

to control the cancer.

She launched into the details
of the drug and the side effects

and the schedule.

I reminded her that we hadn't even yet
biopsied the bright spot on my lung,

and I asked if she was sure
that it was cancer.

I remember viscerally how she seemed
almost frustrated with my question.

Perhaps she thought I wasn't
following along with her explanations,

or, worse still, I was in denial.

I simply wanted her to understand
that, as her patient,

the biopsy was not just a mere formality
to prove an already foregone conclusion.

It was a steel needle
through skin, muscle and bone

that would deliver a deep piece of me
to the surface and answer a question

I wish didn't have to be asked.

Before the biopsy, I could be
a 27-year-old woman

who might have metastatic breast cancer,

who probably had metastatic breast cancer.

This is a critical distinction,

but it's not one that's emphasized
in the most elite oncology training.

Instead, I was dismissed
with an appointment to start treatment

in just a few weeks.

So much has happened
since that first visit.

Ironically, the biopsy was not
just a mere formality.

My former oncologist was right.

(Laughter)

It did show cancer,

but it was a totally separate lung cancer,

and as crazy as it sounds,

this was great news.

I did not have metastatic breast cancer,

I had two different cancers,

but both of them were localized,

and so the lung cancer
was localized enough

that it could be removed.

And so the onslaught of treatments began
with a lung surgery,

continued with chemotherapy

and ended with a breast surgery
just after my 28th birthday.

And then two weeks later,

I started medical school.

My new oncologist --

(Laughter)

who deals much more fluidly
both with facts and their implications,

very reasonably suggested

that I should defer my acceptance
to medical school for a year,

take some time to rest, to recover,

and I trusted her advice.

I felt terrible during the intensive
chemotherapy sessions.

And so I wrote to the dean.

I explained my circumstances,

and a deferral was speedily granted.

But as the chemo fog lifted,

I wondered what
I was going to do with a year.

Should I go to the beach?

(Laughter)

I wasn't really a beach person.

(Laughter)

And how many years
did I have left, anyway?

I really wanted to go to medical school.

It seemed like
a missing piece of my puzzle.

So instead of going around
and around with indecision,

I asked myself: What's the worst
that could happen?

Well, I could be too weak
or too sick to do the work.

It could be too hard for me emotionally.

I could fail out of medical school.

But then I remembered, that wouldn't be
the worst thing that happened to me

even that year.

So why not get started?

Why not continue living
the way that I wanted to live?

So I did.

Bald and rail thin,

I put on my best earrings
and my favorite dress,

and I started.

I pretended to belong,

and I began to.

There is no way to describe
how hard it was.

Some days it felt impossible.

It felt as if I was doing things
that would never matter in the future.

But every day, I asked myself:
Are you still enjoying this?

Is this still what you want to be doing?

And every day, the answer was yes,

sometimes a very qualified yes,

but a yes.

And then, just as I was
getting comfortable

and feeling like I might not necessarily
fail out of medical school,

I received even more devastating news.

I learned that I had a mutation
in a gene called TP53, or p53 for short.

Known as the guardian of the genome,

a mutation --

p53 is responsible for supervising
the repair of our DNA.

A mutation in this gene
means errors go uncorrected.

It means that normal cells
become cancerous at a much higher rate.

All of a sudden, with this knowledge,

my medical history
made a terrible kind of sense.

I had had a childhood cancer --
rhabdomyosarcoma -- at age seven.

It recurred when I was a teenager.

And this was all before p53
had been discovered in the lab.

Then I'd had young adult
breast and lung cancers.

With the knowledge of this mutation,

it seemed that there was likely no end

to the number of cancers
that I could expect in my future.

And yet,

I decided to become
a radiation oncologist.

(Laughter)

I hope to graduate from residency
in just a few months,

move to a new city

and start my first real job
as a doctor and researcher,

because of grit,

because of privilege,

because of therapy,

because of my medical teams
and my family and my teachers,

because genetic diagnoses
should give us the knowledge

to move forward.

And even in the year 2020,

that generally doesn't mean
miracle cures or medical breakthroughs.

Having a devastating genetic diagnosis

means learning to live with uncertainty.

It means learning that you
and your diagnosis

are not the worst thing that could happen.

Learning to live with uncertainty

means walking forward into a life

that is as full of beauty
as it is of challenges.

It means learning for yourself
that cancer is just part of your story.

It may not be the worst thing
that happens to you,

and if it is, that's OK.

You can claim that, and you can own that,

but let that be a narrative
that you author and you authorize,

not one that's prescribed to you
by someone else.

Have your deferral letter in hand,
but use it on your terms.

As I come to the end
of my oncology training,

I have déjà vu again and again
with the following scenario:

A patient has cancer.

There are several options,

all of which offer a different balance
between cure and quality of life,

between the possibility
of alleviating suffering

and the possibility of causing suffering.

An oncologist lays out the options,

but, somewhere in the discussion,
things get skewed.

The choice becomes something more like,

"Well, you could choose to do something,

or you could choose to do nothing.

We could be aggressive,
and treat your cancer,

or we could watch it."

And 9.9 times out of 10, the patient says,

"I want to do everything I can do."

Of course.

Who wouldn't want everything?

But what is everything?

Is everything the ability to sit
in your own home in front of your window

bathed in sunshine
and surrounded by family?

Is everything still being able
to feel your fingers and your toes,

because they haven't gone numb
from chemotherapy?

As oncologists, our everything
is cancer treatment.

It's radiation and surgery
and chemotherapy and novel treatments.

And for us, the worst thing
that could happen --

and I have heard more than one
oncologist say this --

the worst thing that could happen

is that the patient
will develop metastatic disease.

Or, the worst thing that could happen
is that five years from now,

the cancer will grow,
and I'll have to give more radiation.

As a patient and as an oncologist,

I would never argue that these
are not devastating outcomes.

But are they the worst?

Should cancer control

be at the center of our thinking, always?

Many unspeakably, unfathomably painful
and brutal things have happened to me

because of my cancers
and my genetic mutation.

And yet, I consider myself
very lucky indeed,

because the worst thing
that could happen never came to pass;

because I have let devastation
and uncertainty sit at the table,

but somewhere off to the side.

When I was diagnosed
with metastatic breast cancer,

I went to Boston for a second opinion,
because what could I lose?

When my oncologist gave me
very good and very safe

and very standard advice,

I started medical school anyway,

even though I was undergoing
active cancer treatment.

Instead of shying away
from patients with cancer,

I became a radiation oncologist,

and I work with patients
who are very much like me

every single day.

Instead of imagining the suffering
that I might cause to a future partner

when I died of cancer,

I married my wonderful husband.

Because the worst thing that can happen

is always a series of negatives.

It's blank spaces

that should be filled with life.

So what is the most that I have leaned in
to this kind of radical uncertainty?

Well, this is William.

He is the most joyful person
that I have ever met,

and in just over a year, he has already
made the world a better place.

As oncologists, we talk to our patients

as if the worst thing that could happen

is that their cancer could come back,

or that it could spread,
or that they could die from it.

As a patient, I know
that these are paramount.

But I want to change the way
that we think about this,

and I want to change the way
that we talk about this with our patients.

As a patient,

the worst thing that can happen
is that cancer robs you of opportunity,

of the ability to be

and to do

and to love.

And it will.

At least temporarily it will.

But to minimize this loss
of life in the living,

that is the harder, and I would say,
truer job of the oncologist:

to take all the tools that we have
and situate them in the context

of a patient's whole entire life;

to be guides for how
to sit with suffering,

acknowledge it deeply,

but to not let fear of future suffering
be the narrative for the journey forward.

One of my mentors always says
the medicine part is easy.

And it never feels that way
to a junior doctor,

but its contours are finite.

We have big studies to guide us,
and it's what we learn to do in residency.

Much harder is learning how to help
each patient navigate the multitudes

contained in their illness.

So I find it really funny
that, in retrospect,

my life looks like a neat package.

It looks as if I planned
each successive step

and that perhaps cancer
has led to the good things in my life.

Step one: apply to medical school.

Step two: get diagnosed with
and treated for cancer.

And step three: have it all,

a career and a family.

But I will tell you

that each phase was a leap of faith

despite an almost paralyzing uncertainty.

And so it's that courage

that I try to give to each of my patients.

I try to do this regardless
of the technical medical details

of cancers and treatment decisions

and mutations,

regardless of the slippery fiction

of prognosis.

I try to learn what they want

and what they need,

what they wish and what they worry,

what they dream about,

what animated them before

and what will sustain them during
the beastly process of cancer treatment.

It doesn't actually take that much time.

It does take a few focused, quiet moments

that require intentional cultivation.

But this is partnership,

and it matters,

because the worst thing that can happen

is to have an oncologist
who does everything -- everything --

to help cure your cancer

and who does nothing

to help you live your life.

Thank you.

(Applause)