An Educators Encounter with Cancer: Family Medicine, Vol.36, #2, 1993. Wolkenstein, A., Simona, K., and Wolkenstein, Matthew Evan.

"I have prostate cancer and will
have surgery in 2 weeks. Pray for
me if you choose. I will keep you
informed."
I stood back and reread the message
on the 5x7 card I had posted
on the bulletin board. I put my
hands in my pockets and returned
to my office, shutting the door behind
me. Through the window, the
sun set behind the hospital buildings,
all purpling together with the
coming night.
A memory returned to me, familiar
and painful: hanging up the
phone on Friday evening. Hearing
my own voice as it broke apart,
alone in the kitchen as my wife
reached out to me, alone as my son
stood near the door, inching further
away.
I had been expecting this call for
years—everyone on my father’s
side had died from cancer. Now, the
urologist told me that I was joined
to this lineage of mortality. A numbing,
strange relief flooded my mind,
and the weekend drifted by. I told
an endless procession of family and
friends, and, each time, I drifted
further and further away. I had a
new family, it seemed, and new
friends: those who had died from
cancer and those who were dying.
In previous months, two ultrasounds
and a couple of negative biopsies
brought on a flurry of congratulations
from family and
friends. I was, they insisted, cancer
free. I hated them for their optimism,
for their pollyannaism.
“You don’t get it, do you?” I
wanted to say. “Damn the negative
biopsies, I have cancer!”
I agreed to further testing when
my PSA jumped to 38.
Now, I could show them. I could
point to something. I could demand
they take away their own needs for
everything to be fine, their own
needs to be okay. I could demand
them to leave me to my fate.
With Sunday slipping by, I
thought of those at work and how
to tell them, how to negotiate the
complex infrastructure of a health
care workplace, the myriad relationships
and roles. I had only enough
energy, I felt, to say it once, to say
it to everyone. I did not like the secrecy
of systems where some know
right away, some know later, and
some know never. This way, I
thought, picking up my 5x7 card,
this way will make it easier on me.
Or perhaps it will make it easier on
them. Or neither. Ididn’t care. I finished
the card and hung it next to
the elevator.
Within several days, people began
to respond:
“How could you be so open about
a thing like this?”
“You’ve made it tough on all of
us!”
I had neither the energy nor the
desire to decipher the comments,
the tones of voice, the subtle expressions
of people who passed me in
the hall. I had 2 weeks to prepare
myself for surgery.
As I recovered from the anesthetic,
I was told that the cancer had
spread beyond the prostate. I felt
turned inside out, stripped of the
possibility of complete recovery,
stripped of possible treatment options,
stripped of my future. Even
as I had bared my teeth at my
friends’ hopes and chased them
away, still, somewhere deep inside,
hope had crouched, quietly. Now,
even that tiny presence was gone.
On the way home from the hospital,
I stopped at the office, took
down the first card, and, with tears
in my eyes, posted a second.
I have had surgery.The cancer has
spread into my lymph glands.The
treatment is hormonal. Pray for
me if you choose. I will see you
in a month.
My incisions hurt, my body hurt,
I hurt. Several days later, I saw my
urologist. He looked anxious and
eventually spoke: “Your family and
you have cancer—you will have to
work together. . . ”
I didn’t let him finish the sentence.
I told him that I had the cancer,
not my family.My inner voices
joined in: “He doesn’t get it, either.”
“You are,” the voices said,
“alone.”
The Voice
A hospital bed joined our den
furniture. Nights were the worst. I
had awful dreams: I was back in the
hospital, and, from my bed, I could
talk to visitors who expressed sadness
and worry. Most hugged me,
but I was disconnected from my
body, a cloud, eerily unpresent in
the room.
I would wake up, shaking.
Other times, a voice seemed to
speak to me from out of the darkness,
a voice beyond reason: “Heal
yourself.”
In the morning light, I gathered
up the energy it took to shave and
brush my teeth, to look myself in
the mirror. Heal myself? I didn’t
know how. Some dim voice had
commanded me, and I felt the task,
so heavy, so blisteringly raw on my
shoulders, and yet I was empty of
any clue—how to meet it, where to
start.
The Rabbi and the Therapist
The same group, the friends and
family, cycled through our home,
and still I was alone. Our sons were
home for some vague and meaningless
holiday, and we all tried to relate.
At last, desperate for some kind
of change, and frustrated by my
emotional blockade, my wife Kathy
suggested that I call the spiritual
leader in our faith community, a
man I hardly knew. With his long
beard and black coat, he looked like
someone who might have something
to say, more than my colleagues
at work, anyhow, with their
awkward silences and forced
cheeriness. Indeed, as we sat, hour
by hour, day after day, I was struck
by something—not in his dress or
his manner of speech, peppered
with Jewish jargon and Yiddish
phrases. Rather, there was something
in his eyes, something that
reached out to me. I felt no comfort,
a word that meant exactly nothing
during this time. But, with him
before me, I could lament all the
losses—those I’d already felt and
the immeasurable ones I dreaded I
would feel in time—and I found
that I spoke easily now, about dying,
about blame, about loneliness,
and yet, even as I spoke, I felt incapable
of moving emotionally. I
didn’t have the strength.
He recommended that I seek psychotherapy.
I was shocked at the
suggestion. I’d been an educator, a
family therapist, a guide for more
than 25 years. Yet now I needed
someone to show me the sign posts,
to guide me on my way.
The early sessions focused on
what, personally, I wanted to explore.
The words of the urologist
returned to me and stirred up my
anger. The cancer was mine, my
burden alone, and not Kathy’s, and
not our sons’. Kathy and I took sessions
together; we talked about
walls and boundaries and the difference
between the two. I stopped
resisting, perhaps through sheer
exhaustion, and we began to hit pay
dirt. The dreams drifted away, perhaps
because the panic that had
wrapped around my insides and
spirit had loosened. I was amazed.
I had declared hope my enemy, and
yet, here it was, naughty hope, no
longer crouched inside but walking
next to me.
The windows of the car were
rolled down as I drove home from
another session with the therapist.
I could feel the summer wind blowing
on my cheeks, on my red and
tired eyes. I could see, now, that the
more control I gave up, the more I
had. The Rabbi and the therapist
seemed to know more about my
journey than I did. That, I declared
to myself, pulling into the driveway,
was just fine.
Responses
At end of the month, I went back
to teaching at the family medicine
residency. I geared up my emotions
and my coping mechanisms—a
freshman, again, toting a heavy
backpack on the first day of high
school. But, as I reentered the social
and professional matrix, it
seemed more confusing than ever
before. The faculty, the staff, the
residents, all with their own needs
and agendas, they jumbled me up
with comments and questions—or
lack thereof—and all the while, I
was expected to, and I needed, myself,
to, teach and to relate and to
express what I had been learning.
Almost subconsciously, the way
one might toss groceries onto pantry
shelves, I classified the people
around me into three categories—
three categories that I now see as
being the most relevant to who I was
during that painful time. First, I
noticed those who were there for me
for the short haul—responding to
me immediately, visiting at the hospital,
but then disconnecting quite
abruptly. I was suspicious of those
people and avoided them whenever
possible, as if they brought their
own shadow with them everywhere
they went. Over and against these
people stood a second group that
seemed to stay focused for about 6
months and then business as usual.
They had their own lives; perhaps
they hoped I would learn to live
mine. The first two groups now
seemed intent on acting as if nothing
had happened.Many were brilliant
actors and actresses—we all
were—as we played out our professional
and personal scripts.
The third group stuck to me,
whether I had initially pushed them
aside or not, whether I had turned
away from them or not. They were,
for reasons deep and mysterious
and beautiful, interested in my healing
and recovery, from the start and,
apparently, forever. There was, with
them, no “business as usual.”
Things had changed, and our dialogue
was electrified, humming like
an electrical tower—silent and still
but alive, so alive. “How are you
doing?” was no mere social amenity.
It was a life preserver tossed
into icy, choppy waters.
I learned to predict who fit into
which group and then found, astoundingly,
with the unfolding of
time, that I was usually wrong. At
the same time, the responses were
so radically different, so polarizing,
that at times I found them amusing.
From one face came an expression
of love and compassion. The next
was a mask of frigid indifference,
toxic hostility. Reporting to my
urologist for my monthly shot, sitting
next to other patients who wore
that same look I used to wear, that I
still sometimes found on my face
in that early-morning mirror, I
wondered to myself, how could any of
this amuse me? Maybe to help
handle the disappointment, I
thought.
One faculty member who I
thought I knew, who I thought I
understood, didn’t want to attend a
meeting I had called. He told the
group that I was going to die, anyhow,
why should he bother? I pulled
the plunger in my mind and down
he went. One uncomfortable resident
confided to a faculty member
that I made him nervous. He didn’t
want to be around me because he
didn’t know what to say. I used to be
patient with simplicity,with naivete,
with ignorance. Now, however, was
the time for action, the time for
progress. Now, I rinsed these people
away, I flushed them out of my insides.
One resident said he didn’t know
what to expect from me: all this
made him sad. It sometimes interfered with
his patient care and learning.
I could feel my hand reaching,
habitually, for that handle, when
suddenly he spoke, and I froze, my
fingers itching to be rid of his unknowing,
his unfeeling.
“You say that people are behaving
in ways that fall short of your
expectations,” he said. “Is this because
of who they are andwhat they
lack orbecause of who you are and
how you act?”
Healing
I continued to teach a full load
of requirements andwith this effort,
I found that I had just enough
strength left over to wonder, perhaps
for the first time, what the residents
really thought, what they really
felt.Some faculty members rallied
to me. Sometimes they helped
me to refocus, to deflect my attention
away from my illness, to leave
it at the door of the conference
room, the lecture hall, along with
my coat and overshoes. Other times,
they prompted me to bring it up to
the podium. This was, of course, a
tightrope act, and when I wasn’t at
my best, at my sharpest, I fell.
Once, as I dragged a stool from
the side of the room to the stage, a
faculty member approached and
asked me, without a hint of irony in
his voice, if my physical limitations
wouldn’t best be dealt with by retiring.
While love may run deeper than
anger, nothing rallies so fast as fury.
Hot blood coursed through me.
Before I knew it, an old, angry
voice, one I rarely heard these days,
reared up like an enraged stallion
and shot forth. It took a jockey’s
Herculean restraint to keep that
horse on course, to put that faculty
member in his place without riding
over him roughshod.
These encounters were rare.
More often, the hormonal treatments
sapped my energy.While the
natural process of growing older
requires one to find ways to challenge
and redefine one’s relationship
with the physical self (or risk
encountering a crisis of self-perception),
I was hurled along this path
at an unnatural and dizzying pace.
I experienced physical and emotional
changes that forced me to
confront my identity as a man and
forced me to surrender certain expectations
about what my body
should be able to do. Once, walking
up an icy hill in my yard, a grocery
bag in each hand, the wind
pushed into me from the front. I
dropped the bags to keep from being
blown down the hill and fell to
one knee, cursing and crying out in
rage. Power could no longer be my
three times a week six-mile jog.
Now, it was returning to my life, day
after day, pummeling these losses,
round after bloody round, until I
could accept them, reframe them,
and integrate them.
I struggled alone and also with
Kathy, with the therapist and with
the Rabbi, with small groups of
friends and family that seemed intuitively
to move with me. Just as
often, I struggled with loneliness,
isolation, and fear; these feelings
had become traveling companions
on my journey.
I added meditation to my already
exhausting healing regimen, I practiced
relaxation techniques, and I
learned guided imagery to bolster
my immune system and my spirit.
Couple-therapy sessions challenged
Kathy and I to communicate better
and guided us in giving and receiving
feedback. Frequently, and to our
shock, we resurrected a landscape
of unfinished issues from both my
past and from our past as a couple.
Our sons had long since returned
to their lives. They kept in contact
by e-mail and with phone calls.
They seemed filled with an intense
resolve to continue building their
lives and incorporating Kathy and
me into their futures. This, in turn,
encouraged me to press on emotionally
and spiritually.
The Spark
The hours I spent with the Rabbi
helped me to seek out my spirit. I
marveled at the intensity of his devotion,
and I wondered if it was too
late to rekindle my own. Years of
neglect had pushed it to the far corners
of my consciousness. I wondered
if spirit and spirituality could
play a role, any role, in healing. This
cancer, or rather, the experience of
the diagnosis and the ensuing journey,
awoke in me the absolute need
to be attentive and mindful of my
spirit. I focused on ritual and prayer,
real prayer.
I began to tap at the many walls
of my alienation with this heavy
new hammer, and as I walked along,
tapping and looking for weak spots,
I began to feel what that savvy resident
had put in front of me, months
earlier:much of this wall was of my
own building. His truth forced me
to understand; forgiveness of myself
and others might come later.
Continued remission, I decided,
was in the hands of the Almighty.
But true healing would require the
assistance of fellow travelers.
Empathy
I stared at the Bible verse next to
the phone on my desk.
“You are to love the stranger because
you were strangers in the land
of Egypt.” The Bible expected ex-slaves
to exercise compassion, tolerance,
even love, for those who had
once been their oppressors. Those
ex-slaves, if not for love and compassion,
would have swelled with
hate and mistrust, eating themselves
alive from the inside out.
How could I find compassion in
myself—enslaved not by people but
by pain and loss, both inward and
physical?
Along with daily prayer, continued
therapy, and renewed commitment
to my wife, family, and friends
came stillness.With stillness came
new wisdom. It belonged to some
source far beyond, but it passed
through me. Maybe now I was
ready to be there for others—not as
a therapist, playing a role, but as me,
naked, struggling, present.
I remembered, painfully, awakening
from the operation that was
supposed to remove my prostate
and end the nightmare for good. I
was told that the cancer had snuck
forth from the prostate walls. It was
hiding in my body. I felt contaminated
and exposed. I opened my
mouth to speak, and the first thing
that came out was a vow to help
others with similar pain.
Now, I realized that this was not
a heroic oath, but a plea to be
spared, a disguised cry of pain. Like
any therapist might, I followed a
script. I covered my phenomenal
weakness with an empty promise.
And, likewise, now I understood
that I could not help anyone, least
of all other prostate cancer patients,
but I could be there. I could walk
alongside the lonely and the suffering
and show them that somebody
else wasn’t afraid of the burdens
they carried. I could accompany
these people on their own solo
paths.
I began to consult with other men
with prostate cancer. Most were
newly diagnosed or in stages of
healing. Others were barely surviving,
just existing. They said things
I never could, never would, and I
marveled at their desperate honesty.
“I can’t get my family to really
listen, to know how scared I am of
dying.”
“I feel like I should die and get it
over with and spare everybody all
this useless grief.”
“My body is falling apart. If I
define a ‘man’ the way I used to—
then I’m no man.”
I met with these men at the residency
at night, in homes, in restaurants,
in cafés—once in my car in a
driveway. We were like a secret
club, an undercover squad. I let go
of traditional concepts of office based
practice, not only because
these men abhorred the thought of
being “patients” but also because I
had the very same disease! You
can’t act therapeutic in a coffee
house. Being there was all I could
offer, all anyone could offer these
men.
Over time, these men became
more and more like peers, comrades,
fellow travelers. We would
average about 10 meetings, schedule
a check-up at 6 months, and finish
off with phone calls at their request.
Some of these relationships
lingered on; it felt as if we shared a
bond that was older than we were.
It seemed as if I was the only
mental health professional in the
area with prostate cancer—statistically
impossible but if not, where
were the others? Where were the
prostate cancer “mentors” trained in
therapy, who could offer their wisdom
and compassion or present
their simple presence to scared newcomers
on this long and painful
journey?
The Question
No more 5x7 cards.
Feeling strong and steady in my
remission, I faced a new class of
residents, the next generation of
doctors. This time, I asked a group
of physicians, outside the residency,
for thoughtful guidance.
“Just tell them and make no big
deal out of it,” said some.
I wanted to smack my forehead
and ask if we hadn’t moved 2 inches
through our effort and our pain
It is a big deal, I wanted to shout.
Cancer is always a big deal.
“By telling them,” they said, “you
place the residents in the awkward
position of feeling as if they need
to do or say something.”
I stared at them.
“The world,” said some, “isn’t
ready for so much empathy.”
“Save your energy,” said others,
“for winnable battles.”
I wanted to freeze time, turn to
an invisible audience like a
wounded Hamlet, and ask anyone
out there who might listen, who
might share a simple question: how
can we expect so much from our
doctors after we’ve limited their
potential to grow?
The question filled my mouth,
and at last I cast it into the open.
Two years earlier, I’d hung my first
card to the wall, and the journey
began. Since then, we’d wrestled
and backpedaled and sidestepped
through what felt like miles of painful
progress. And here we were,
deadlocked, exactly where we’d
started.
My heart sank. The faculty
looked at one another.
“Young physicians need to be
protected,” they said. “Alan, you’re
asking us to change a basic assumption
of medical training.”
“Yes,” I said, pulling out a
couple of fresh, white 5x7 cards.
“Where should we begin?”

Correspondence:  alan.wolkenstein@gmail.com.