Reflections on Living with My Husband’s Cancer . . . by Linda Whitesitt

Love

My husband and I are both classical musicians. I play the violin and viola, and Bennett is a conductor and trumpet player. Over the years we have come to know the old truth the music happens in the space between the notes. It is the mystery that rests between the notes as well as the nature of how they are connected that brings the notes on the page to life. It has been our goal to shape the relationship between the notes in such a way that we create music that moves us and the listener. The spaces and what they contain give the music meaning.

In the same way, the mystery that rests in the space between the moments of our life together flows through our relationship like a river and sustains us. For us, that mystery is love. Perhaps it’s the same for music.

As we have moved through time together, the experience of that “time together” — the accumulation of all the moments and the love between them — has carved out a shared history similar to how the unfolding in time of notes and spaces creates a memory of a unified work of art. Looking back, we see a musical work — and our marriage — as whole and indivisible, and neither one of us has been willing to tear it up and throw it away during the real hard times when we thought love had ceased to fill up the spaces. The wholeness and indivisibility of our shared life has always pulled us back. It is what remains with us just like the music is still present after the last note is played.

Love is what kept Bennett going before emergency surgery to repair a leak in the remaining portion of his right lung only a few weeks after his initial surgery for lung cancer in October 2009. Some time in the middle of the night before the early morning surgery, my husband’s roommate, on hearing Bennett distraught and tearful, managed to move his bed close to Bennett’s so that he could hold my husband’s hand and pray with him. Bennett’s roommate was not capable of getting out of bed, so we never have been able to figure out how he moved his hospital bed. But somehow he did, and in those terrifying moments late at night, he filled the space between them with love, assurance and comfort.

Bennett also shares a special relationship with someone else — his surgeon. We both know that his doctor’s caring attention, his supportive communication and his commitment have helped lengthen the tine in which we can both say, “We’re surviving cancer.” This is another space — the space between doctor and patient — that has been filled with love. And we know that relationships filled with love are healing.

Inhale / Exhale

Sometimes the spaces between notes are filled with moments of silence — moments when players stop playing and singers stop singing. Many times these rests are moments for breaths between phrases. They form a container for the phrases they enclose. Music played without attention given to breathing between phrases is lifeless, without flow and direction. Music, like life, needs breath to come alive.

There are many times in our journey of surviving cancer when breathing eludes me. So many events have taken my breath away: sitting in the doctor’s office and listening to him explain that the results of the biopsy showed cancer and, two years later, hearing that the cancer had returned; trying to take in another doctor’s description of the side effects of chemotherapy and radiation; hearing the surgeon say that because he had found cancer in a lymph node outside of my husband’s lung, it was Stage III cancer and not Stage I; answering a call from my husband and hearing him gasp that he couldn’t breathe.

There have even been whole periods of time, days even, when it seemed like I couldn’t breathe: the ten minutes it took me to get home not knowing if Bennett would still be breathing when I got there; the next two minutes waiting for the ambulance; the three hours driving behind the ambulance from our regional hospital to the hospital in Charlottesville; the days waiting for the results of CT and PET scans; the hours spent at Bennett’s side while chemicals flowed into his body; the days between treatments as I watched his body become weaker and weaker.

When my husband started to heal after the surgery and chemotherapy, there were many moments when I felt I couldn’t get my breath. Every time Bennett coughed, every time he sighed or groaned, my body would immediately shift into panic mode. Once when he yelled in frustration at a computer glitch, I was in tears by the time I got to the top of the stairs to see what the problem was. I drove him crazy with my constant query, “What’s wrong?”

It was during those trying days of panic for no good reason that a wise friend gave me words, stories and strategies to help me make my way out of instant fright over every sneeze and cough. One of the things she suggested was to breathe — inhale and exhale deeply. She even gave me different breathing responses for different situations.

When I remember to breathe, the cancer doesn’t go away. But just like the rests in music that form a container for musical phrases, my breath forms a container for the moments of my life, and I am reminded that for this moment, we are together. With each breath, I am thankful for the time we share. Breathing helps me feel connected to the life that surrounds my — my husband’s breath, the rain on the window, the flowers in the path, and our cats asleep on the sofa. Breathing gives me the strength to rest in the moment no matter what it holds.

Fear

Fear is a frequent companion. I fear my husband dying. I fear what might happen to Bennett’s body during chemo and radiation. I fear that the cancer will not respond to treatment. Now that the cancer has recurred (fall 2011), fear seems to be a constant, unwelcome, companion. It’s a hollow pit in my stomach that won’t go away.

Fear doesn’t always visit with the same intensity. It comes in waves similar to the waves of grief I experienced after my mother’s death. Sometimes, the strength of the wave knocks me off my feet. During the months when the CT scans showed nothing to worry about, the fear receded. But it always shows itself quickly when Bennett experiences a pain or a cough we can’t explain. When Bennett is away in the evening for a rehearsal and I am in he house alone, a wave of fear can pull me under. The thought — “This is how it’s going to be when he’s gone” — washes over me. It isn’t so much a matter of “I’ll be alone.” Instead, it’s “How will I be able to go on when the ‘I’ that I am feels so intimately tied to the ‘we’ that we are?”

This is the source of the pit in my stomach in this journey of “we’re surviving cancer.” The ground beneath my feet is always shifting, and these earthquakes make me lose sight of who I am because my “I” is a “we.” Who is the “I” in the “we’re surviving cancer” story? It’s not the same “I” as before there was any cancer. Confronted with the fragility of life, I want to hang on to how it was before cancer, and frankly, there are times that I get mad as hell that cancer has changed everything.

There was a time in the winter of 2010 during the “no signs of cancer” months when I found myself inexplicably angry at Bennett. It took me weeks to realize that being angry at him masked the horrible fear that it might be our last Christmas together. Once I discovered its source, my anger vanished, and with it, my fear.

Now it’s another Christmas (2011), and the cancer is back. There is no anger this time, only fear. What helps? Writing these reflections is a comfort. Finding the words to describe what I have kept and continue to keep inside shines sunlight into dark and fearful places. Taking to heart the one very important word in the title of our book — “today” — helps abate my fear.

Today — this day — this moment — my husband and I are eating breakfast together, paying the bills together, having dinner with friends together. We’re making music together, and he’s helping me with my work. The “I” I am today is this woman who loves this man, who reaches out and touches him and leans over and kisses his cheek. Today we are both alive.

I have today with Bennett. I’d be lying if I said that it’s enough.

Endure

It is in the small, sometimes inconsequential moments of our life together that I am frequently struck with the sudden, strong desire that “we” must endure. Fixing dinner, opening the mail, grocery shopping — these are some of the shared moments when I long that the pleasure of doing them together lasts as long as possible. In some ways, it’s the same as holding onto glorious moments in classical music.

A few weeks ago the music ensemble I direct and play in performed an arrangement of the “Nimrod” variation from Edward Elgar’s Enigma Variations, a sublimely beautiful work. Playing it, I was deeply aware of every note, and many of them I held as if I didn’t want to let them go. I savored each note’s significance thoroughly before going on to the next. This practice of awareness is what I want to bring to every moment of our life together.

Cancer forces me to bring all of my awareness to the times my husband and I share. It also nudges me to be a more engaged witness in other encounters I have throughout the day. When I do, when I bring my awareness to the mountains before my eyes, the friend who is telling me about her day, the hummingbird’s wings I hear as she flies above the feeder, the shiny rock that catches my attention, I find that my life fills with meaning. The moment endures. It is luminous.

I remember entering a busy airport after a weeklong spiritual retreat in an idyllic country setting. I was stunned. My time away had made me intensely aware of the radiance of every person I saw. It was as if every individual was lit from within — everyone special, everyone shining in this great web of life. The moment didn’t last long, and I’ve never been able to recapture the depth of that experience, but my husband’s cancer brings me close.

At this moment one of our cats jumped into my lap as I was writing these words. Instead of brushing him away, I paused, took him into my arms for as long as he allowed me to hold him, and became aware of the preciousness of this moment. He’s not one to cuddle, so I had to treasure being with him fully and quickly. I want all of the moments in my life to endure, but my cat and life have other plans.

It occurs to me that “endure” has another meaning. Bennett is my hero when it comes to enduring many bouts with cancer without giving in to fear or pain. He has remained positive and optimistic throughout the surgeries and the chemo and is refusing to yield to despair when faced with lung cancer recurrence and the prospect of radiation and more chemo. In all of the health updates to family and friends he has written, there has never been even a hint of anger or despondency.

I have never known my husband to be anything but hopeful and determined. It is his indomitable will that has carried both of us through the sometimes bumpy terrain of our  life together. It is his unwavering commitment to me and to life that lifts me up in the moments when I lose heart. His words also help — “No matter what happens, Linda, we will endure.”

I want us to endure. Bennett teaches me how.

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Update: It’s been almost nine years since Bennett was diagnosed with lung cancer. His oncologist has declared his survival “a miracle.” I agree!

This story is from the book Linda wrote with her husband, Bennett Lentczner — We’re Surviving Cancer . . . Today.

Linda is our story gatherer, and Bennett is part of our our team.

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Read Linda’s story about her search for her immigrant grandparents.

Read Kate Green’s moving tribute to her mother.