JULIETTA’S SPEECH : AN EVENING WITH MIKE GARSON
NOVEMBER 11, 2018 | SANTA BARBARA, CALIFORNIA
Hi. My name is Jules Laurita. I am 18 years old and a future cancer survivor from Colorado.
One year and eleven days ago, I was living a completely healthy, normal life, about to graduate High School a semester early (which I still did), working at a job I loved, recording a record of my own songs with my dad (still am), playing bass and singing in an indie rock band (still am), being super independent, passionate and already taking charge of my life and future. (still am, but it’s different now).
One year and twelve days ago, I had a seizure. I was seventeen years old, and so it was at Children’s Hospital, in Denver, that I found out I had a brain tumor. Glioblastoma Multiforme, Level 4. Nothing prepares you for that kind of news, and that then becomes everything that defines your life. Not all of the things that you, or your family, casually envisioned for your life stretch out into the one, two, five, or 10-year plan, but it becomes hour to hour, day by day, month by month at best. You hang onto the good days to slide through the bad days. Surgeries, thirty-three radiation treatments, chemo, hospital stays because your counts are low. You really take note of the good days. Today is a really good day, and I am super happy to be here and to have been invited to tell you about something really positive!
My brain tumor is “pediatric” GBM, based on genetic markers. I am 18, and I am an adult, I tell you. I just voted for the first time, by the way.
When I had my radiation treatments, it was at an adult oncology institution. The waiting rooms and their much older demographic, and even the way the doctors talked about everything, had a tone that implied that they were approaching things around adults that have had some life experience, and “we’ll give you as much more life as we can”. It was like a tarnished hope.
Treatments, appointments, and the waiting room back across the street at Children’s Hospital have had a different disconnect. Lots of sweet, cute little bald kids running around just being kids within the only reality they have known. There is definitely more of an element of “hope” or “future” in the pediatric world, but I soon realized that could not relate to either.
The AYA, adolescent, and young adult, cancer community is slowly and steadily getting a stronger voice. Much of this seems to be coming from scientific advancements around genetic markers that are determining that many young adults’ tumors are “pediatric” in nature, and vice versa, and I bet that in a few years, we won’t be hearing the words “pediatric” or “adult” around tumors like mine, but they will have different names for the different GBM’s.
More needs to be done to support the AYA community as its own demographic within this collective fight. Back in April I attended CancerCon in Denver, put on by StupidCancer.org. Six months after my diagnosis, I met people my own age who were either survivors or people going through it. Until then I only knew the intensity of my own experience. I made friends who get it. It made it real but made it part of a bigger picture for the first time.
Do you know how penguins huddle together to battle the cold? Having cancer is really, really cold. That’s how the community works, and it’s not just about warmth and feeling better. It’s about survival.
Foundations like Candy Hammeras’s “Hammeras Group” and Amanda Haddock’s “Dragon Master Foundation” mean more to this fight than you can know. Foundations like this are ALWAYS started by people with personal experiences around this fight. That is why they are an invaluable help to families like mine. It’s because they know.
We met Candy through social media and in-person last January when we flew to LA when she introduced us to some people for second opinions. My parents and I were still in shock and scrambling to learn as much as we could about this new reality. It really was our first introduction to a supportive resource like this. She also took us to meet Mike Garson at his studio which was really great because we didn’t talk about cancer, but about music, and Mike and my dad and I played a little and connected about what this night is also about.
Since then, Candy and Amanda have been a constant and accessible support for us, but mainly for my parents’ late-night freakouts and questions. They have a vast network of people, professionals, and institutions that can begin to cut through the mystery and confusion.
One thing about donating to foundations like this, or even directly supporting families going through this, that people sometimes don’t realize- my family has had to voraciously self-educate and intensely advocate for my care, while I do the internal, personal fight to beat this. Their battles are with institutions, insurance, logistics of care coordination… and also seeking out resources and help from people like Candy and Amanda. This is our struggle. But, THEN, we meet people that just got their diagnosis and don’t know what to do, or are lost in the systems, or don’t know what questions to ask their doctors, or are overwhelmed about insurance stuff… then we help five families just by sharing our experiences, and then we point them towards resources like these foundations… It has exponential benefits
It seems like, in 2018, it shouldn’t be the case that crowdfunding, gofundme campaigns, and non-profit foundations would be leading the way to the cure for pediatric cancers, but it is. It’s grass roots, D.I.Y., and it’s all being done by people who know the depth of what this means.
That’s how community works, and it’s not just about warmth and feeling better. It’s about survival. It saves lives.
I wanted to read a poem that I wrote on the way home from the hospital after my first biopsy and hearing the resulting diagnosis on October 26th of 2017.
Tumors like broken asphalt
smeared across a Snow White forehead
Milky Way rocks
the kind that choke me hard
I am
foaming at the mouth
Earthquake thoughts shaking my bones
I am
bruising my mother’s fingertips
Plagued with hospital Saturday mornings
your charcoal words feel like IV fluids
like a blizzard
raging
through my veins
the crevices of their worried faces
elongate
in the spaces
between their droopy sentences
torn paper,
dark circles,
needles,
sterile walls,
caffeine,
plastic smiles,
rosie cheeked nurses
disappointed to find
a 2 AM body with thick black attitude
in place of a once sweet, fleshy pink little girl
No false hope,
no loss of hope,
no plan or predictions.
Heavy impostor,
black rock in my skull, electric fence girl
Stomping her Doc Martins
patience tied tightly around pinky fingers
trying desperately to be good-natured
Silver and gold angel wings
thank you for coming I love you I'll be okay
throat closing bouquets budding
unsolicited condolences
A childhood bedroom
converted
to an autumn garden
burial ground