My brother Lew has cancer.
He is diagnosed early in 2011 at sixty-six. He has
just spent a few weeks on the beach in Florida to get away from the New England
winter. Wonderful trip. Then, suddenly, after returning to Rhode
Island his left leg begins to swell.
What could it be? A spider
bite? Some weird allergic reaction? An infection? A series of doctor visits and scans, from the
local hospital to Massachusetts General and then the diagnosis. Metastatic carcinoma of unknown origin. It has probably been growing undetected for a
year. They don’t know where it started
in his body. Along with the
multisyllabic diagnoses come multisyllabic drugs of, well, to us, unknown
origin—xeloda , cisplatin, carboplatin, gemcitabine, taxol, pemetrexed,
vinorelbine. The names do not roll off
the tongue. They represent a new
language to be mastered. For all their
strangeness, they might as well be the names of half-human, half-insect kings from
the other side of the universe. I feel
as though I have razor blades in my mouth every time I try to say one of
them. There is, early on, also the
possibility of multiple surgeries with “ectomy” at the end of each one…meaning
cut it out. Remove this. Remove that.
Ironically, when a scan reveals microscopic signs of cancer in other
areas of the body, the surgeries are ruled out.
They won’t give him the supposed quality of life they are intended to
give.
My brother Lew has cancer.
He is twenty-seven months older than I am. We have always said it that way in our
family, from the time we are kids. Not
“roughly two years older”. Not “two years
and three months older.” Twenty-seven
months. There is a certain love of
precision in our blood, when it comes to some things. Now that precision has brought us perilously
close in a way we never imagined.
Twenty-seven months apart. One of
us has cancer. The other doesn’t. But now I
am sixty-six. Could I be next? Only a pathological optimist would fail to
wonder.
***
I’m seven years old.
My father is a writer. I am going
to be a writer. My first undertaking is
a novel called “Little Lewie”. My older brother
Lew is the hero. He is twenty-seven
months older than I am. Actually, he is
twenty-six months and three weeks older.
I have just figured this out, at seven.
Precision is important. But I’ve learned you can round up and still be considered
precise. Lew is my hero in my first book
because he is my older brother and I love him.
Even though we are close in age.
Even though there is some strange energy between us sometimes. I later learn it is called “sibling
rivalry.” I do not have this with Larry,
who is seven years older. He is an
island apart. His thoughts and feelings
are beyond us. Seven years is forever,
especially when you’re seven. But
whatever that energy is that I will later learn to call rivalry, there is
something else far more powerful. I love
my brother. I think he is really, really
neat. My parents love him, too. They
think he is really neat. I love how they
love him.
I type my story on my father’s yellow copy paper, commonly
used at newspapers these days, something that will vanish in about five decades
as computers take over. But right now,
this yellow paper is my parchment, my holy scroll. I type only short paragraphs. I have to push hard, one finger at a time, on
the keys of my father’s massive Royal typewriter. Then I draw pictures on each page. It’s a basketball story. Heroism on the court. Little Lewie is, well, little, but he can
really move and shoot. I start with stick figures, then draw the flesh around
them and erase the stick lines or shade over them, stretched out on my stomach
in the grass under the dogwood tree.
***
My brother Lew has cancer.
It’s now two years downstream from the moment of
diagnosis. The moment when a doctor
says, “You have cancer.” The moment when
only you can know what it feels like to be the “you” in that sentence. Lew is
beating the survival odds. He is in the
one tenth of one percent category. But
he still has cancer. There has been no
surgery, other than an arduous initial one to get a biopsy. So he has all his organs. He is a whole person, but his body is gradually
experiencing the insurrection of rebel cells.
First radiation and then chemo have become part of the daily
experience. This is my second visit from
across the country. The first was this
time a year ago. His left leg was
swollen to about two and a-half times the normal size. The initial tumor is in
his left hip, inoperably surrounding the femoral artery. Still, during the first visit he is in what
our father often referred to as “fine fettle,” all things considered. (That phrase, “all things considered” has
taken on a whole different meaning. ) He
wears a compression stocking which is hard to get on and off. The swelling is due to what is called
lymphedema. Still, he is able to drive
and insists on taking me all around the area where he has lived for nearly
forty years…and which I have never visited in all that time. He takes me to the campus at University of
Massachusetts at Dartmouth where he won eight national awards for being one
terrific French professor and from which
he has just recently retired. The campus
is an impressive collection of massive concrete rectangles and open
walkways. I can imagine him in a lecture
hall. I can imagine him being stopped by
a student with a question as he makes his way from one building to
another. I can imagine the respect, even
adoration in his eyes. I don’t have to
see him lecture to know he is capable of spellbinding lectures of the richest
kind. He takes me all around the Rhode
Island-Massachusetts boundary zone. We
drive across big metal bridges and onto low rocky beaches. He shares memory upon memory, forty years of
life I have missed being in California. He takes me to the whaling museum and the
church across the street where whalers worshipped before going out into the big
sea after behemoths, the church Melville mentions in Moby Dick. He takes me to a number of his favorite lunch
places including the Inn at Castle Hill, a grand old building sitting on a hill
above a bay. It looks like something out
of The Great Gatsby. A broad lawn runs
from the Inn down to the water. There
are lines of bright, empty white Adirondack chairs. It’s still spring. The wind has a chill. No one will sit in them for a while.
My brother Lew has cancer.
I keep saying it, thinking that maybe it will fully sink in
if I do. Because it hasn’t. It feels as if we are in an alternate
universe. If we just find a window we
can wriggle through, we can get back to the one where he is enjoying his
retirement, cancer free. We lost dad in
02 at eighty-five. We lost Larry in 04
at sixty-four. For the first time in our
lives, we are both older than our oldest brother. We lost Mom later in 04. Now it’s Lew and me and we are dealing with
this demon again. I’m looking for that
window. If we can only wriggle through…
The second visit.
This morning Lew is seated in the large reclining chemo chair at St.
Anne’s Oncology Hospital in Fall River, just over the line in Massachusetts. For two years, there has been nothing in his
lungs but small dots. Now, suddenly, a
golf ball-sized mass in the lower left lung.
How does this happen in only a short time between scans? The demon. Lew is holding his shirt above his chest as he did when he was a kid to show
our mother his chicken pox. This time, it is so the nurse can slip a needle
that looks like a kitten’s claw into the port that has been installed just
below the skin above his right pectoral muscle.
I ask if it hurts. He says, “Yes,
but just temporarily—a pin prick.” The
nurse adds, “We are penetrating just a little skin.”
Fifteen minutes earlier, we are with his oncologist, Nancy, a
woman in her late thirties, who talks to him as if he might be an old boyfriend
from high school. She is sweet, but she
is also very direct and thorough. Lew
has a lot of questions. He knows he is
at the stage where the hope for any kind of enduring remission is a
slim-to-none possibility. He wants to
know what the end is like. When he can’t
handle the pain any more, or when it’s too much labor to breathe, will they put
him on a drip? No, the doctor tells him,
we rarely use drips any more. The
necessary pain meds are delivered orally in pill form, slipped under the
tongue. He’s surprised but I tell him Mom was given morphine pills, under the
tongue. The doctor confirms. Under the tongue. The same tongue he stuck out at me when we
were kids to make brilliantly outrageous faces.
The same tongue he stuck out for the doctor who examined him for
tonsillitis. The same tongue that helped
him articulate millions of words as he lectured and coached university students
for thirty six years. The same tongue
that he no doubt shared in the ecstatic clutch of love with his wife of forty
years. Now, the tongue that will be the
mail box for pain suppression until there are no more funny faces possible, no
more words, no more love.
***
A lot of us say we want to live to be a hundred…or
more. We don’t think about the potential
dark side of that wish. My mother lived
to bury her first born child when he was only sixty-four. Had my father not died two years earlier,
he’d have been broken by Larry’s death.
Were he alive today, he’d be ninety-five. If he knew his second son was unlikely to
make it out of his sixties, he’d have gone from broken to pulverized. My mother would have been crushed beside
him. People say they want the power to
see the future. They could get rich
betting on the Kentucky Derby and Superbowl, knowing the outcomes. And they
could get paralyzed foreseeing the coming calamities. We all signed the lease of life without the
term being filled in. It’s an act of
faith. Without the ignorance of what is
in store for us, it isn’t living.
***
Lew looks at the doctor straight on as she tells him that
the recent onset of fatigue is the cancer, not the fentanyl patch, not the
dilaudid, not the high doses of ibuprofen.
That’s why we’re trying this new chemo, docetaxel, to get you some
energy back. To give you some good
days.
He tells her, he has shared with me that he doesn’t expect
to see his 69th birthday seven months away. She looks right at him. We know where this is going, she says. She doesn’t confirm the timeline, but the
direction and the gist. I am struck by
how present she is, how honest, how empathetic without being unctuous. This is her everyday life, I guess. She is here to help people live a little
longer and then leave comfortably. Lew
seems grateful for her honesty. He is
beyond struggling. He doesn’t hit her
with twenty “what if’s”.
I ask Lew if he is afraid.
No. I ask him if he is
angry. No. He has told me in detail about his belief in
reincarnation. He is sure he has been
here before and will be again. He sees
no tragedy, just some disappointment. “I
thought I had more time. I ask if he
feels sadness at times. Yes. Sadness.
For Anne, for his grandson, Ben, whom he has raised as his son for his
two sons, Tommy and Jeffrey and their partners, Jackie and Tina. He knows they are bound to him. They’ll “be okay” whatever that means. In that okayness, they will miss him
terribly. They will hurt for a long
time. But Lew has accepted he doesn’t
have long. His stoicism comes straight
from our mother. Certainly not Dad. Though he was calm and accepting when his
time came, Dad was eighty-five. Had this
happened to him at such a young age, he’d have been mightily angry, and
mightily depressed. I am more like him
but Lew’s calm reaches me. Besides, we
are both old enough to stop asking why bad things happen to good people, and
good things to bad. As one of the mantra’s
of our age says: It is what it is. But Lew does have a new mantra, a surprising
one. Several times a day he sighs from
fatigue and/or pain, quietly uttering the old Yiddish expression, “Oy vey”. It means, “Oh, where?” as in “Oh, where am
I?” Funny that a people should develop
that habit of asking, “Where am I?” when they are hurting. Ironic, since we have never been very
religious or even ethnic. I doubt Lew
has been in a synagogue in decades.
Still, the words we heard from our grandparents and on occasion, our
father, seem to say it best right now.
“Where am I?” Am I still here
where I get to be the person I have always been? Or am I now somehow in a different place, in
an alternate universe where weird multisyllabic kings dictate who I am and what
I can do?
***
The docetaxel is dripping into him. He is in no pain. He rests with his eyes closed, turned on his
right hip. A new nurse shows up,
crouches down in his direct line of sight, touches him gently. He opens his eyes. “Jan!”
They hug and hold each other as dearly as lifelong friends. “I’ve missed you!” he says. She returns the feeling. She was his first oncology nurse. They got close. She got transferred to another unit. She heard he was asking for her.
The hugs, the deep direct gazes. These people are either brilliantly trained
or just brilliantly attuned (or both).
Why don’t we all look at each other this way every day? Why do we wait for cancer to make gazing a
true communion?
At least four different nurses interact with Lew and at some
point, each one of them does a double take when they look at me. Then, it’s either the straightforward, “You
must be Lew’s brother!” or the teasing, “You can’t be Lew’s brother!” Do we really look that alike? Of course, we are family. We have the same skin tone, high foreheads,
the barest thatch left on top, similar hands…but aren’t our noses, even though
they’re both prominent, actually quite different? Our mouths?
The overall configuration of our heads?
Have we missed something, something that is both physical and sacred
that is obvious to others…something that is the essence of what it means to be
brothers?
***
During my visit, I have a series of dreams: I am in a strange landscape…vertiginous
cliffs, massive tsunamis, buses swept away filled with children, entire cruise
boats disappearing into the valleys of wave mountains. I do not recognize any place or any one. I keep asking, “Where am I?” “What is this place?” “How will I ever get home?” I wake up, heart pounding…not racing, probably
not above 65, but pounding all the way to my ankles. Maybe high blood pressure is generally a
silent killer, but at this moment, it is loud and clear. In another dream, I am told by a grizzled old
man that I must follow the rules. I
object. “I have been self-employed a
long time. I don’t follow your
rules. I follow mine!” He points to pictures of my parents, Larry,
Lew. I wake up, again, heart slamming
into my chest.
***
I’m at Tom’s Market in Tiverton, RI. I have a list from both Lew and Anne. I’m only here for three days but this is one
thing I can do. I can take a few tasks
off Anne’s plate. I can ask someone
where the summer sausage is, where the prunes are, whether or not they have some
of Lew’s favorites. I can also walk the
dog, Magnet, a 52 pound muscular chunk of Australian herder. He has spent hours laying on the bed next to
Lew, sleeping, but he is young and born to run.
I can also show Anne how to use the Jack LaLanne Juicer. She’s not a tech person. We put the juicer together and throw in some
carrots, cumber, celery, apple.
***
Lew has no quandary over the meaning of life. His time has been beautiful and rich. You have touched so many, I say. Think of all those students who love
you. Think of the teachers who moved
you. Teachers never know the expanses of
time and terrain their teachings will cross…but they travel. Your teachings have wings. People a half a world away at this moment
might be talking about their time in one of your classes. He smiles at the thought. And think of the durability of those
contributions as they move from life to life, without anyone even knowing their
point of origin was a lecture you gave.
If you are right, Lew, if reincarnation is real and there is an upward
progression to greater and greater consciousness and goodness, think of what
might be next after a life as rich as this one.
The word “Wow!” would be appropriate.
***
He is laying on his bed talking about the final
arrangements. He has written his own
obit, as he calls it. He doesn’t want
Anne to worry about it and he certainly doesn’t want someone who never really
knew him slapping it together. He will
be cremated. There will be no memorial service
because he doesn’t need it, nor does Anne.
They know who they have been to each other. All these years, he has had a nickname for
her, a term of endearment in French.
Perfect, because she was also a French teacher. Perfect because uttering
it was a daily gift. Perfect because it
implied both heaven and earth, defying and submitting to gravity. Perfect.
***
I am sitting outside on the front steps of his house while
he naps inside. I notice the Japanese
cherry tree in full bloom a few feet away.
Further down the lawn, the dogwood’s flowers are just emerging from
their own buds and still cherry colored themselves. On the other side of the lawn, a forty foot
high maple is beginning to leaf. I
remember our childhood yard. We had a
Japanese cherry. We had a dogwood under
which I wrote and drew about the heroic exploits of Little Lewie. We also had a maple from which we took the
wing-like seeds, split them and stuck them on our noses. Is this coincidence? Accidental poetry? Is it our mother and father’s hands reaching
beyond the grave to shape our choices?
Is it proof of the themes that move with us from one life to the
next? Is it a montage of more images
from mirrors within mirrors and windows with a little wriggle room?
***
My brother Lew has cancer.
It is tempting to think of the situation as a battle. So many people do. We can say that cancer is The Claw and The
Fist and Lew and all those helping him are Tookie. But the war metaphor doesn’t seem accurate. In the war metaphor, if a person dies, then
he has lost. He is a loser. But in my brother, I do not see a loser. I see courage. I see curiosity. I see concern and gratitude and love. A person can die badly or well. My father, my mother and my oldest brother,
Larry died well, with surprising clarity.
To die well is not a loss. It is
not a victory. It is a beautiful gift to
both yourself and those who love you. It
has so many layers and colors and movements.
It is music, art and poetry in one final act. That is what I am thinking, sitting on the
edge of my bed in the dark, as he sleeps in the room below.
***
I have to leave early.
Lew is still sleeping. Anne comes
out to say goodbye. We kiss and go to
hug and have one of those moments that could be awkward but turns out to be
funny and dear…we both move to put our heads on the same side. We haven’t hugged enough to have it
down. We will no doubt be doing a lot
more. We’ll get good at it. She encourages me to go into the
bedroom. Lew is turned on his right hip,
curled up, looking to me about eight years old.
I lean over and kiss him on the forehead and say, “I love you.” He wakes up and thanks me again for coming
and says we’ll talk soon. I realize on
the way to the airport that he didn’t have his hearing aid in. He didn’t hear me say I love you. I will say it again and again between now and
“We know where this is going.”
On my way home, in the airport men’s room, I catch a
sideways glimpse of myself in the mirror.
For a second, I think I am looking at Lew. This happens more and more lately. I catch a glimpse in a car or shop window and
see my father or our older brother, Larry, or Lew.
I am me and not me. I
carry the family with me. Even my mother
shows up in the mirror from time to time.
Is this a resonance from my
earliest days when I struggled as the youngest to enter into the sphere of
everyday exchanges? Do I carry a primal
uncertainty about who I am; or being the youngest, am I designated to carry the
memories, the images, the family history, the endlessly rearranging montage of
who we were and might have been?
***
Over Arizona, the red landscape, the edge of the Grand
Canyon, areas blackened by the shadows of clouds. It looks like a cancerous lung to me now.
***
As little kids, Lew and I share a bedroom. When Mom and Dad have said good night and
gone downstairs out of earshot, Lew brings out the flashlight he has been
hiding under his pillow. The show
begins. He projects shadow characters on
the ceiling with his hand. There is The Fist. There is The Claw. These are not good guys. But then, there is Tookie. Tookie is the shadow of two fingers. Tookie is our hero. He leads us through endless adventures. We lie with our eyes fixed on the
ceiling. I’m sure Lew doesn’t know from
one moment to the next what his characters are going to do. They take on a life of their own. Somehow, with the exploits of The Claw and
The Fist being played out above us each night, the daytime reports of “scary”
Russians and Chinese and nuclear bombs from which we are drilled to hide under
our desks at school are not so scary. We
have Tookie on our side. Tookie will
keep us safe.
***
Another clear set of memories. As kids, we say, “I love you,” all the time. Mostly to Mom and Dad…and they to us. I love you Mommy. I love you Daddy. I love you Bobby, Lew, Larry. Then, somewhere along the way as our ages
require two numbers, it stops. Years
later, when Dad is dying, then Larry, then Mom, those words come back to
us. Not as musical little toss-offs but definitive
statements we enter, tentatively at first, but then with full ownership. It’s as if we lost love’s seeds for years and
ultimately found them in the bottoms of our pockets where they’d been waiting
all along to be taken out one by one, delicately, between finger and thumb, to
plant in each other’s hearts. We were
gardeners as children. We learned it
from our parents. Then lost it…then
found it again, thank God, in time.
I love you Mom.
I love you Dad.
I love you Larry.
I love you Lew.
I love you Tookie.
I see you, even in the dark…especially in the dark.
I see you gazing back at me
in true communion.
C 2013 Bob Kamm
