What happened when I open-sourced my brain cancer

This back here was my brain cancer.

Isn't it nice?

(Laughter)

The key phrase is "was",

phew.

(Applause)

Having brain cancer was really,

as you can imagine,

shocking news for me.

I knew nothing about cancer.

In Western cultures, when you have cancer,

it's as if you disappear, in a way.

Your life as a complex human being
is replaced by medical data:

Your images, your exams,
your lab values,

a list of medicines.

And everyone changes as well.

You suddenly become a disease-on-legs.

Doctors start speaking a language
which you don't understand.

They start pointing their fingers

onto your body and onto your images.

People start changing as well

because they start dealing
with the disease

instead of with the human being.

They say, "What did the doctor say?"

before even saying, "Hello."

And in the meanwhile,

you're left with questions to which
nobody gives an answer for.

These are the "Can I?" questions:

Can I work while I have cancer?

Can I study, can I make love,
can I be creative?

And you wonder, "What have I done
to deserve this?"

You wonder, "Can I change something
in my lifestyle?"

You wonder, "Can I do something,

are there any other options?"

And, obviously, doctors are
the good guys in all these scenarios

because they are very professional
and dedicated to curing you.

But they often are very used to
having to deal with patients,

so I'd say that they sometimes
loose the idea

that this is torture for you

and that you become, literally, a patient,

the patient means "the one who waits."

They tend to, you know,
things are changing, but classically,

they tend to not engage you in any way

about learning about your condition,

to getting also your friends
and family engaged,

or showing you ways in which
you can change your lifestyle

to minimize the risks of what
you're going through.

But instead, you're forced there to wait

in the hands of a series
of very professional strangers.

While I was in the hospital,

I asked for a printed-out picture
of my cancer

and I spoke with it.

I said --

it was really hard to obtain
because it's not common practice

to ask for a picture of your own cancer --

I talked to it and I said,

"Okay cancer, you're not
all there is to me.

There's more to me.

A cure, whichever it is, will have
to deal with the whole of me."

And so, the next day, I left the hospital

against medical advice.

I was determined to change
my relationship with the cancer

and I was determined to learn
more about my cancer

before doing anything
as drastic as a surgery.

I'm an artist, I use several forms
of open-source technologies

and open information in my practice.

So my best bet was
to get it all out there,

get the information out there,

and use it so that it could be
accessed by anyone.

So I created a website,
which is called La Cura,

which I put my medical data online,

I actually had to hack it

and that's a thing which we
can talk about in another speech.

I choose this word, La Cura,

La Cura in Italian means, "The cure",

because in many different cultures,

the word "cure" can mean
many different things.

In our Western cultures,

it means eradicating
or reversing a disease,

but in different cultures,

for example, a culture from Asia,

from the Mediterranean,
from Latin countries, from Africa,

it can mean many more things.

Of course, I was interested
in the opinions of doctors

and healthcare providers,

but I was also interested in
the cure of the artist, of the poet,

of the designer, of, who knows,
the musicians.

I was interested the social cure,

I was interested in
the psychological cure,

I was interested in the spiritual cure,

I was interested in the emotional cure,

I was interested in any form of cure.

And, it worked.

The La Cura website went viral.

I received lots of media attention
from Italy and from abroad

and I quickly received more than
500,000 contacts--

emails, social networking --

most of them were a suggestion
on how to cure my cancer,

but more of them were about
how to cure myself

as a full individual.

For example, many thousands of videos,
images, pictures, art performances

were produced for La Cura.

For example, here we see
Francesca Fini in her performance.

Or, as artist Patrick Litchy has done,

he produce a 3D sculpture of my tumor

and put it on sale on Thingiverse.

Now you can have my cancer, too,

(Laughter)

which is a nice thing,
if you think about it,

we can share our cancer.

And this was going on --

scientists, the traditional
medicine experts,

several researchers, doctors--

all connected with me to give advice.

With all this information and support,

I was able to form a team of several
neurosurgeons, traditional doctors,

oncologists, and several
hundred volunteers

with whom I was able to discuss

the information I was receiving,
which is very important.

And together, we were able to form
a strategy for my own cure

in many languages, according
to many cultures.

And the current strategy
spanned the whole world

and thousands of years of human history,

which is quite remarkable for me.

The follow-up MRIs, showed, luckily,
little to no growth of the cancer.

So I was able to take my time and choose:

I choose the doctor I wanted
to work with,

I choose the hospital I wanted to stay in,

and in the meanwhile, I was supported
by thousands of people,

none of whom felt pity for me.

Everyone felt like they could
take an active role

in helping me to get well,

and this was the most important
part of La Cura.

What are the outcomes?

I'm fine, as you can see, very fine.

(Applause)

I have excellent news:

after the surgery, I had a very
low-grade Glioma,

which is "good" kind of cancer
which doesn't grow a lot.

I have completely changed
my life and my lifestyle,

everything I did was thoughtfully
designed to get me engaged.

Up until the very last few minutes
of the surgery,

which was very intense,

a matrix of electrodes has been
implanted in my brain

from the side,

to be able to build a functional map

of what the brain controls.

And right before the operation,

we were able to discuss the map,
the functional map of my brain,

with the doctor to understand
which risks I was running into

and if there were any I want to avoid,

obviously, there were.

And this openness was really
the fundamental part of La Cura.

Thousands of people shared
their stories, their experiences.

Doctors got to talk to people
they don't usually consult

when they think about cancer.

I'm a self-founding, continuous
state of translation

among many different languages

in which science meets emotion

and conventional research meets
traditional research.

The most important thing of La Cura
was to feel as part

of a really engaged and connected society,

whose wellness really depends
on the wellness

of all of its components.

This global performance is my
open-source cure for cancer.

And what I feel like,

it's a cure for me,

but for us all.

Thank you.

(Applause).