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.

So You Want to Lead a Band? . . . by Bennett Lentczner

In February of 1962, I began teaching band at North Shore Junior High School in Glen Head, New York. I was hired for the job mid-year on the recommendation of William Strickland, the supervisor of music in Hempstead, New York, where I was completing my student teaching. My soon-to-be new boss, Ted Ryder, had contacted Mr. Strickland because he was in desperate need for someone to replace his ailing junior high band director.

Mr. Ryder came to Hempstead to observe me teach and to interview me — a not even wet-behind-the-ears fellow who had only just decided he really would like to be a teacher. During the interview, Mr. Ryder told me he had never hired anyone with less than five years of teaching experience, but because Mr. Strickland had given me such a strong recommendation, he was offering me the job. Delighted, I began an adventure in the world of teaching that has lasted a lifetime.

I approached my first day on he job with great excitement. I was a band director! My junior high student teaching experience had been in a school with an excellent band feeder program where a very fine group of elementary school teachers prepared their students for the next level of band participation. In that junior high school band, the instrumentation was complete; in North Shore’s junior high school band — not so much. After my first rehearsal at North Shore, Mr. Ryder called me into his office and asked me how it went. I said it had been just fine, except “there were no bassoons.” He looked at me with a very serious pair of eyes and said, “I know.” That is why we hired you. You want bassoons? Develop them.” Welcome to the real world of teaching instrumental music.

All these years later, I remember that challenge, how I met it, and more importantly, how meeting that obstacle subsequently led to a career as a professional bassoonist for no less than two of the students who started their adventure trusting me for guidance. Over the years, Mr. Ryder placed many challenges in front of me. He supported all of my efforts to meet them and took great pride in my accomplishments. We became very good friends, attending professional meetings together and playing golf with as much frequency as time permitted. In June of 2005, long after I had left North Shore, my former students created an Alumni Band Concert, and we dedicated it to my colleague and friend, Ted Ryder. Without Ted’s intuition about me and his trust in my ability to grow in my new and demanding profession, there would not have been an Alumni Band. He was my first real mentor.

Ted was a great believer in the New York State School Music Association (NYSSMA) festivals. He required all the ensemble directors in the district to take their groups to this annual spring adjudication event and receive comments by some of the finest teachers in the state. It was an opportunity measure our work against high performance standards as well as gain insight into how we could improve our group and our teaching. Suffice to say that my first experience with NYSSMA dealt a devastating blow to my young ego. Juilliard graduates were not accustomed to less than excellent. In the months afterwards as I looked back at that first festival performance — my band had received a humiliating D — I came to understand the importance of teaching not for a particular performance, but in a sequential manner so that my students could grow as musicians.

With Ted Ryder’s support, I gained the tools needed to apply my Juilliard education to helping students make music at a high level and feel the satisfaction of their own accomplishments. His recognition of the abilities I had developed came when he turned the high school band over to me. I remember him calling me into his office and telling me that from day one he had recognized my musical skill; now he felt I had gained sufficient technical skill in applying that musicianship, and I deserved the opportunity to conduct the North Shore High School Band. I was thrilled and vowed to make him proud of the faith he had in me. Many years later his wife told me that he was so proud of what I was able to accomplish and spoke of me often and in very flattering terms.

The high school bands I had the pleasure of directing at North Shore earned many distinctions, among them were perfect scores at annual NYSSMA festivals. None was more impressive than the perfect score awarded by composers Donald Hunsberger and Hale Smith for the performance of Hunsberger’s transcription of Dmitri Shostakovich’s Festive Overture. What I remember about the performance was that the busses that took us to the school where the festival was taking place got lost, arriving just a few minutes before we were scheduled to perform. The 105 members of the band retrieved their instruments, went on stage and warmed up on their own like any group of professional players would do, listened to a quick tuning note, and within a few minutes, we began the performance. From the first note, I knew that the days of school-level band performances with this outstanding group of players was a thing of the past. Yes, I can take credit for being their teacher, but they had transformed what they had been taught into making music — not school music.

Our next year was spent reaching for higher and higher musical goals. Against the advice of Ted Ryder, I decided to make Percy Grainger’s Lincolnshire Posy the centerpiece of our NYSSMA festival performance. His advice was not based on the ability of the band to play this extremely difficult piece, but rather, he wasn’t one hundred percent sure they could perform at the high level they were capable of in the intense environment of a festival performance. I had no doubt and neither did the band. They delivered a flawless, exciting musical performance that had all of my colleague directors and their students on their feet with thunderous applause. Wow!

My joy was short-lived. While one of the adjudicators awarded the band perfect scores in all categories, the other judge, a last minute substitute for one of New York State’s leading collegiate band directors, gave the band low marks for my having chosen a more difficult version of the Grainger piece. Because I had a fine bassoon player in the band, I had chosen the version that most bands avoid because it is so difficult. Most bands perform the version that is scored for bass clarinet. The last-minute substitute judge happened to be a bass clarinet player, and this was his only negative comment. Amazing!

Ted and I knew that this was the best high school band I had ever conducted, and he fought the rating all the way to the state level. Nothing changed, but the band understood what really mattered — the music. They had performed with maturity and musical excellence, and they knew that both Ted and I were proud of all of them.

The following is an excerpt from the tribute I wrote in remembrance of Ted for his memorial service:

More than anything else, I came to know how deeply Ted cared for kids. I know his seemingly all-business approach often masked the pride he felt for even the smallest student accomplishment, and I also know how thrilled he was when young people made good music. For him, there were no finer moments. It was what he was all about. . . .

I will remember Ted always — for the pride he had in my successes, for caring, and for teaching me that there was always more to learn. I thank him for his encouragement, his example and his friendship.

Goodbye, my friend. See you on the first “big” tee.

February 9, 2000

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This story is from an essay in Bennett Lentczner’s book, Every Step Counts, Every Word Matters!

Bennett is a member of our team.

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Read a story about a person who changed the course of a young woman’s life.