Note: A few months ago there was a bit of a bright spot in this story—
the real story. The Make-A-Wish Foundation sent Lisa and her family
to Mexico for a much needed two-week vacation. During this long pull,
there have been any number of individuals and groups and
organizations who have helped. Make-A-Wish is one of the good ones.

Again...Still

So it started again.

This time we were staying with Justin's grandparents on Long Island
and making the drive into the city every day, five days a week for
the treatment. One week on, two or three off so that he could recover
from the chemo. Sometimes we'd go back to Pittsburgh for the off
weeks, sometimes not.

We were back at Sloan Kettering, again and were welcomed back like
old friends. It's strange in a way. You get to know a lot of these
people because you're going through this fucking nightmare and you're
all in the same boat or working for the same goal and then someone
who you get to know well, someone who becomes almost one of your best
friends just disappears and you know that the etiquette is not to ask
because you may not want to hear the answer.

You know what had probably happened to them and if you didn't talk
about it then it wasn't as real. OK, maybe they were all better, but
maybe they weren't.

I made the mistake of asking one of the nurses why Justin had been
moved to another cubicle during one of his chemos. She politely and
efficiently told me that the boy who had been in there with him, in
the other bed, was having a procedure and that Justin would be moved
back in a few minutes. Sure enough, maybe twenty minutes later Justin
was brought back in from the empty room they'd stashed him in. He
told me that the other kid had some kind of seizure and that the
nurses had moved him to the other room so that they could do whatever
had to be done.

I found out the next day that the kid had died.

Shit.

It was just so matter of fact, so—shit—so clinical. It was so
Goddamned every day.

And it was every day there.

One day I parked the car, got Justin upstairs and started and
remembered that I had to do an errand. I went back out to get the car
and walked by an entrance I'd never noticed to Sloan before. The
reason I noticed this time was that a hearse was pulling out, stopped
for traffic. The driver said a pleasant Good Morning' to me as I
went past him. He was making a pick up.

Goddamnit.

After a while you just sort of stop reacting.

Well, that's the way it was for me, anyway. I think Justin just
blocked it out most of the time. I know there were times when he
didn't, of course and then he'd be depressed and retreat either
upstairs and close the door or he'd stay in the room and take a
mental trip someplace. Same thing.

I'd try to hold him then. I knew that if he wanted to talk that he
would, and sometimes he did, but often I'd just hold him and let him
work it out.

His grandparents were being good about everything. I have to hand
them that. They had no problems with our sharing a room and they
didn't ask stupid questions. They were both intelligent people and
thank God that they didn't make problems because we had just about
all we could handle.

We actually had talked about staying at Ronald McDonald House again
but there were problems there this time around. They were booked up,
for starters and they said, tactfully, that Justin was really getting
too old and that there were kids who were like two and six years old
who needed the space—that they were coming over from Greece and the
last room had been promised. They were nice about it, they're nice
people, but they were politely firm, especially when they found out
that his grandparents lived pretty locally. I know that they had a
point, but I guess that we sort of outstayed our welcome.

Well, fine. Justin would probably rather have stayed in a real house
with his family, anyway.

We'd get up about five thirty every morning while it's still dark,
get ready and make the drive into the city so that we could be there
by about seven to get the IV started. He'd lie there for a few hours,
dozing, reading, finish up that shit, disconnect from the tubes, and
stagger to his feet. I'd wheel him out and down to the parking garage
and we'd go back to Long Island for another night.

The one piece of good news is that he's managing to take a couple of
these college classes he loved. It's just about the only normal thing
he has going now. He takes two classes at a local college and he
kicks ass in them, too.

That's good.

We were afraid that he'd have to quit or postpone them, but they're
helping his morale so much that the doctors want him to continue.

He was trying to put a good spin on everything the last week at
Sloan. There was a new kid there, maybe fifteen years old. A girl
from England who had just lost her hair to the treatments, her port
had just been installed and she was sad and in some pain from it.
Justin was in the same room for his drip that day and he pointed out
one of his scars, the one on his neck near his collarbone from an old
shunt.

"Want to see Frankenstein?" He pulled the collar of his tee down so
she could see the thing. The look on her face was horror. "I just
blush and tell anyone tacky enough to ask that it's a hickey. Works
every time." She actually laughed.

OK, shit, that's another thing I just remembered. The asshole doctors
made him delay the start of the new chemo rounds because the tumor in
his lefty breast wasn't big enough to warrant the round. Excuse me?

He has tumors in both lungs, his fucking lymph nodes are affected—the
ones he has left, the ones that weren't removed—and there's another
tumor in his right breast, but because the one in the lefty was
smaller than whatever guidelines they use, they insisted on waiting.
As it was explained to me the tumor was only one and a half
centimeters and they waited until it reached three.

I mean—Jesus.

So we're started again, the hair is falling out and he's sick as shit
and I'm wondering how long he's going to be able to go through this.

His grandparents do what they can. They cook his favorite foods and
at first he tried to eat some to be polite and because he knew that
they were worried but after a while he just gave up with that and
would smile, apologize and make his way to the couch to sleep.

I see the looks on their faces and I know that this is tearing them
up the way it does with anyone who sees what's really involved. I see
what it's doing to his mother and his sister and his friends.

I know what it's doing to me and I wish sometimes that I didn't know
what it was doing to him, but I do and it's cutting my heart out.

Everyone tries to keep a positive thing going and to stay cheerful
and optimistic and all that shit but at what point is it simply too
much? When do you tell the doctors that they can take their
treatments and their tests and their needles and their bills and just
shove it?

When do you decide that the child has suffered more than anyone
should be asked to? When do you say that's enough, stop this?

Yes, I know. If a child, a young man or a young woman—or even an old
one—can still fight they should. Of course. I know that.

"Do not go gentle into that good night. Rage, rage against the dying
of the light."

Yes, I've read it, too.

I know that you don't give up because maybe tomorrow or next week or
next month the breakthrough drug or procedure will be available and
it will make all the difference.

I know that.

I do.

But I also see the look on his face because he knows that when his
friends come over they're mentally chalking up brownie point in some
cosmic game—doing their good deeds before they get on with their real
lives.

I see the expression he has when he sees that IV filled with that
crap which he knows is poisoning him while it tries to make him
better being brought to his room and set up. He watches the fluid
drip into the tubes, almost hypnotized by the steady dripping.

If I thought that this was helping, if I thought that it was making
him better, if I believed that at the end of this he'd be able to get
up and live his life—even just a reasonable semblance of it, then it
would be worth everything that's going on now. It would be worth the
two and a half years of agony and terror and sickness and despair and
disappointment and heartbreak.

If I thought that it was working it would be different. If I thought
for a minute that the ups have in any way balanced out the downs I'd
say that it was worth it. If I thought that the quality of life that
he's living now and might, maybe, have to look forward to, were worth
the price that's being paid now…that would be different.

But the truth is that I don't think that it is and I think that
Justin is going to die and that the disease is going to beat him and
win.

He's so weak now that the doctors won't do the surgery to remove
whatever they were going to remove—his breasts? More nodes? What
difference does it make? The tumors in his lungs are inoperable and
not responding to either chemo or radiation.

What's the Goddamned point?

And you know something else? It's not just his life that's being
destroyed by this. His mother is a martyred mess. His sister is
neglected and resentful and angry and scared to death because her
brother has become the the thing with cancer' in the next room—when
he's well enough to even be in the next room.

His father has checked out.

And I'm—I'm a different person than I was. I'm not me anymore. I've
become part of JustinandBrian. I've become the man who shows up with
Justin at Sloan. I'm the ad man who has to schedule his appointments
to dovetail with the radiation schedule or the chemo schedule or the
MRI appointment.

I'm an appendage to a person who has a disease and the disease has
become the dominant force in every damn day, day in and day out. It'
takes over every aspect of your life. It dictates where you live,
when you get up in the morning, what you do all day, whom you can do
it with and when you go to bed. It tells you what you can and can't
eat and drink. It decides if you can go to school or to work, what
you can wear and whom you'll be spending your days with. It' makes
all the decisions and it seems too often that any free choice is gone
with the wind, at least for the foreseeable future.

And you know, if I thought that it was going to work, all the
treatments and all the pain and all the upheaval and expense, if I
really believed that he'd be OK at the end of some endless tunnel
then I'd think it was fine and just the price you pay, but I don't
think that anymore.

I did. I used to think that, but now I don't.

How much can you put someone through? How much can you ask them to
fight?

I know—nothing matters but life; survival is the most important
thing. I know I've heard all of the arguments about it. I know that
when a child is sick—and in a lot of ways Justin is still a child—you
do whatever you can and then you do more. I know that.

But when do you decide that the child has suffered enough?

Is it when the fifteenth tumor is discovered? Is it with the fourth
or the fifth or the tenth round of chemo? Is it the thousandth time
they throw up or the fiftieth movie or pizza with their friends that
they're too sick to get out of bed for? Is it when the doctors say
that the chemo this time will last another year? Is it when the child
cries in pain and frustration every week or is it when they cry every
day?

OK, fine, I know. This time the report from the front lines doesn't
really have a point, just another check in from the other side, but
you know what? That's the way this thing is. Day by day.

Week by week.

Month by month.

And now it's year by year.

TBC