Living while waiting... An art form

[Andrea Barnett Budin]

THIS IS AN ESSAY E'D TO ME THAT I THOUGHT MANY OF MY SISTERS AND BROTHERS MIGHT BENEFIT FROM READING.

I THINK EACH ONE OF US CAN RELATE, AND HOPEFULLY FEEL INSPIRED TO TAKE THE TIME WE HAVE AND RUN WITH IT, CHERISHING EACH MOMENT AND THOSE WE LOVE...


In 2003 I suffered a grand mal seizure followed by the diagnosis of a
brain tumor. After a 10 hour MRI assisted brain surgery and a year on
anti-seizure medication, life calmed down. In 2006 I was diagnosed
with Non-Hodgkin's Lymphoma and had months of chemotherapy. Now after
two years I am completing Rituxan, a follow up on the earlier
treatment that is intended to extend remission.

Recently I had the final infusion. But I was not at all sure that
pulling away the safety net was a cause for celebration. My doctor
poked his head into the curtained chamber to assure me that he
expected a long remission. Kind of him, but what could he say?

Remission is cancer's suspended animation. The renegade cells are
poised to return but no one knows when. It could be a month or a
decade; for my type of lymphoma (one of the more than thirty varieties
of Non-Hodgkin's lymphoma) there is no cure. So I am stuck in what Dr.
Seuss -- in a book I used to read to my daughter -- calls "a most
useless place. The Waiting place...."

I have been here before; my wife was diagnosed with cancer when she
was 31. Our daughter was ten months old, and we waited. Following my
brain tumor and surgery, we waited. We thought then we were done. No
more bullets in the chamber. We felt safe, but tentative.

A swollen lymph node was the first warning of this new cancer. A
biopsy confirmed our unspoken fear. It seemed incredible, overwhelming
to think it was happening again, happening anew. The doctor called me
at work. I came home to tell my wife and she was in the shower. I
walked in fully dressed and we held each other; our tears combined
with the cascade of water.

I had the strange, surreal experience of hearing my congregants' shock
that this could happen to the family of the Rabbi -- as though
professional piety was a shield against disease. As though God played
favorites.

Right before my brain surgery I appeared in front of the congregation
and asked them for their patience and their prayers. Three year later
I was standing before them, bald. I witnessed the realization in their
eyes that there are no guarantees, no protected people. No one is safe.

At moments, my wife and I will look at each other and understand the
unspoken. We have both been scared, on and off, more and less, for a
long time. And now with the end of treatment we are scared anew and
waiting once more. Well, what now?

Do you live as if remission will go on forever? Or do you allow the
thought of death to be before your eyes always, so as not to waste a
precious moment of life?

Every patient is surrounded by people assuring him "you will be fine."
A woman in my congregation told me, with a sage look, "You are going
to be ok. I know these things." I told her I would feel more
comfortable if she had foreseen the cancer in the first place.
Statistics are meaningless. Neither my wife nor I had risk factors. No
one knows. We've rolled snake-eyes too many times to count on breaking
the bank.

What have I left undone? That marching song of purpose is quickly
undermined by the whisper of nihilism: so what if you've left
something undone? Will the world really be poorer for that article,
that book unwritten? Then I hear my own voice counseling others, love
more, care more, risk more, be more thoughtful.

One afternoon in the middle of chemo, when my hair was gone and most
of my energy with it, my wife was bringing our then 9 year old
daughter home from school. I heard my daughter say as the door opened,
"Is Daddy on the couch again?" Nothing has ever made me sadder than
those words.

There may be stem cell transplant in my future. There may be a new
regimen of drugs. They are always 'in the pipeline' I am told.

For now I am just waiting. I am trying to find my own way through this
because, inevitably, I will be asked how I did it. Rabbis are supposed
to be figures of authority and calm. It was hard enough to reassure my
congregation that a fickle universe does not mean that God is absent.
That belief does not indemnify me against adversity. That my faith
through all this is unshaken. How does one live, Rabbi, is the
question my congregants ask, of not so directly. Tell me, Rabbi -- it
is your job to know.

My answer, I now realize, is: Live as if you are fine, knowing that
you are not. Death is the overriding truth of life but it need not be
its constant companion. My safety net is gone. I feel, as all people
in remission do, that each time I fly my hand may slip from the
trapeze. But to live earthbound is to give the cancer more than it
deserves.

I was never taught that God promises us forever. Each day is graced
with beauty, with the certainty that this world is not all. I am not
owed more years. I do, however, desperately wish for them.

I am grateful for the time I have been given. I am scared it is
running out. And I pray with a new intensity -- not that I will be
promised a cure, but that I won't waste my waiting in fear. I owe it
to my family, my community and to God not to be done before I really
am done.

WITH MY LOVE, AS ALWAYS...