I was discharged on June 1st after fourteen days in the hospital and two
surgeries within seven — every neurological symptom gone the moment the tumor
came out. I went home to get strong for chemo.
For three weeks, it worked. Family. Real food. Friends showing up. I was thirty
pounds lighter than I'd been in May, but I was home, and the plan was clear.
Then the pain came back. In the back of my head — and only there.
02 — The Pressure
Any change in angle. Any at all.
Mid-June. Nausea again. Dizziness. No energy — not myself at all, and getting
worse. And a pain concentrated at the back of my skull that any change in head
angle would set off. Every day it took a little more of my ability to move.
In hindsight, the tumor was already back, and it was raising the pressure
inside my head.
Sunday night, June 21st. I threw up three times that day. My mother drove me
to the ER at Delray Medical Center. I didn't sleep in my own bed again for
sixty days.
03 — The Drain
A hole in my skull to let the pressure out.
The scan on June 22nd showed the tumor back at the same spot, nearly the size
of the one removed in May. It was blocking the fourth ventricle — the channel
that drains fluid from the brain. The fluid had nowhere to go. One chamber had
doubled in size. The pressure kept climbing.
On Wednesday, June 24th,
Dr. Young
performed an emergency procedure: a burr hole through the skull, and an
external drain to release the trapped fluid. Three hours. I was fully
unconscious. My sister was in the room.
I remember waking up almost as soon as the drain was in. Then I was
unconscious again — and that's what sent them back in. On June 25th they
removed the tumor a second time.
In the days after, I remember draining fluid from my own brain into a bag,
by hand.
04 — The Shunt
The drain was temporary. The shunt is for life.
After the second removal there was one more procedure, separate from the
others: a shunt — a small implanted device that keeps fluid draining from
the brain. The external drain had bought time. This one doesn't come out.
I was still conscious for this one. It's the one piece of that summer that's
permanent. It will be with me for the rest of my life.
Not long after, I was gone again. This time, for weeks.
05 — The Friend I Don't Remember
July 7th. I don't remember it.
Ibrahim has been one of my closest friends since fifth grade. On July 7th he
came to see me. He had no idea how bad things were — he hadn't believed it, until he
stood in the room.
I was unconscious and heavily medicated. And yet my mother, who was there,
says I woke up and greeted him. He told me he loved me, and left.
I have no memory of it. He does. That's the thing about those weeks: I lost
the time. The people who love me didn't.
06 — Three Weeks of Dying
What is it like to die for three weeks?
July 10th. They put me on a ventilator. I stayed on it for three weeks.
Somewhere in there, chemo started. I wasn't awake for it.
After the ventilator came a tracheostomy — a breathing tube through the neck —
so that, eventually, I could speak and eat again. I woke up the moment it was
in. My sister came for her usual visit that day and was visibly shocked
at how awake I was. The whole family was a little weirded out.
But a trach means no voice. For as long as it was in, the only way I could
reach a nurse, or my own mother, was a dry-erase marker on a clipboard.
A psychological burden on top of everything else.
A second round of chemo happened in there too — trach in, not fully conscious,
barely able to communicate. They didn't wait. The tumor had already shown what
it could do.
Five tubes, one summer
Keeping them straight matters. Here's what each one was.
EVD
External ventricular drain. A catheter through a small hole in the skull, draining fluid from the brain into a bag. June 24th.
Shunt
A thin tube with a valve, implanted under the skin, that carries excess fluid from the brain to elsewhere in the body, where it's absorbed. Placed in a separate procedure after the second removal. Permanent.
Ventilator
A tube through the mouth into the windpipe, connected to a machine that breathes for you. July 10th, for three weeks.
Tracheostomy
A surgical opening in the neck for a breathing tube. A longer-term airway that can allow speaking later. After the ventilator.
PEG tube
A feeding tube through the abdominal wall directly into the stomach. Placed while I was unconscious. Removed early — see below.
08 — Strangers
They had no reason to help me the way they did.
I was told the trach and the feeding tube would take four to six weeks, minimum,
each with its own weaning process. Two people who worked at the hospital didn't
accept that. Each of them, on their own, pushed to have the tubes out weeks ahead
of schedule. They were right.
Hospital staff
Two people I won't name
Unnamed, by choice
They believed I didn't need the tubes anymore, and they kept saying so to the
right people until it happened. They didn't have to.
The hospital
Boca Raton Regional
The chemo I needed was under a national shortage. While I was unconscious, I
was moved to Boca Regional, who pulled supply from other hospitals across the
region — including Miami — to get it. I have no memory of the transfer. This
was a place where things could have failed. They didn't. Fate, again.
Family
My sister
Unnamed, by choice
Twice a day. As early as 7:30 in the morning to catch the doctors on rounds,
while I couldn't understand a word. Days off work. Every phone call. And when
case managers pushed for rehab placements she knew weren't good enough, she
used the authority I'd given her over my care — and got me into Pinecrest,
the one that was.
Neurosurgery
Dr. Young's team
In the shadows — guiding my sister on what to push for and which calls to
make. Dr. Young performed the emergency drain himself.
Since fifth grade
Ibrahim
Since fifth grade. The visit I don't remember — July 7th.
Since second grade
Santiago
My closest friend. He tracked my recovery every single day through my
sister, from the very beginning — and he was there when I came home.
09 — Sixty Days
Cake. Pizza. A proper shower.
From Boca Regional, an ambulance took me to Pinecrest, the rehab center
attached to Delray Medical — the hospital where all of this started. I remember that ride vividly. It may be the first clear
memory I have from after the coma.
Saturday, August 22nd. Home. My family bought cake and pizza. Santiago — my
closest friend since second grade — was there. Things could not have gotten
better.
And yet. I was extremely weak, and for the first time I could see what the
summer had cost. I weighed 135 pounds. I'd walked into the ER in May at 185.
First proper shower in two months. Two days at home.
185May
135August 22
120Today
10 — 1% Better
Every day is 1% better.
Round three of chemo ran August 25th to 29th at Delray Medical, then home.
The first days after are vomiting. After that it's diarrhea after nearly every
meal, and the dehydration that follows. It took until early September, mostly
by trial and error, to find the electrolyte and sodium mix that works.
I have it now.
I'm around 120 pounds as I write this. Round four — the last — is ahead in
mid-September, and this time I'm going in prepared. The target is to be
recovered by the end of the year.
I can definitely tell that everybody's a little bit aged. My family carried
this while I was gone. The people who saw me at the bottom — family, friends,
the staff — use the word miracle. For once, I agree with them.
How lucky am I? I couldn't be more thankful for those around me. I believe
they're a critical reason I'm even alive.
“He who has a ‘why’ can bear almost any ‘how.’”
— Friedrich Nietzsche
Everything raised goes toward treatment. The first part of the story, the
supporters wall, and the ways to help are in Chapter One.
