Posts Tagged ‘leiomyosarcoma’

Thirty-eight CT scans later, life’s lessons from a musician and a teacher

January 6, 2011

We count good moments, not years

When we don’t give in to our fears

     I once went with a hunch,

     It helped my patient, a bunch.

And she looks good in front of her peers.

My patient, Diane, has given me permission to use this information in my blog. 

She taught my three children instrumental music; she came to me as a patient more than a decade ago.

Six years ago a cough brought her in.  As with all health professionals doing their job with a woman between ten and sixty, I asked if there were any chance she was pregnant. 

“No,” she said.

Sometimes I get a hunch and a long time ago I learned to trust that tingling at the back of my brain; in this case it told me not to believe her. 

“Well,” I said, “Just lay back on the exam table while I check your tummy.” 

I plainly felt the top of her uterus higher than her belly button, but I couldn’t find a heartbeat with the Doppler.

I pled urgency with an OB-Gyn and got her an appointment within the hour.   The ultrasound showed her womb had turned into a malignancy the size of a soccer ball.

A few weeks later, she came, in her words, to a “critical decision that I make a ‘leap of faith’ in action right before surgery, because I knew in order to live I had to not be afraid to die.”

The pathology report said leiomyosarcoma, a cancer of the uterine muscle.  In later years she said, “I was always a survivor from the beginning.  I was born C-section at 7 mo.[ 3.5 lbs] in 1960.  I had no idea how having ‘faith’, ‘letting go’ of past hurts, and learning to trust others would change my life all for the better.”

It helped that she had never been a bitter person.

I coordinated her care as she went from specialist to specialist.  So rare a tumor had no chemotherapeutic experience.  With a paucity of clinical evidence, I gave advice from my heart. 

“The worst day of my life wasn’t when you called and told me it was in my lungs,” she said.  “Not even close.  I’ve had more good days since my diagnosis than I had in my entire life combined.”

The next summer Bethany and I met Diane and her husband on their way out of the movie theater.  She’d been carded trying to get into an R rated movie.  Her skin had the clear glow of a teenager and her hair shone in the sun.  She walked with a bounce befitting a sophomore.   

The spring after that she sat in the waiting room of the Cancer Center before a radiation treatment.  The other cancer patients turned to her. “You’re not here for radiation,” they said, “you’re just another representative. What do you represent?”

“I represent hope,” she said.

My middle daughter fell rock climbing three years ago; in the aftermath of ICU’s and neurosurgeons and months of not knowing I learned a great deal.  Diane and I have discussed these truths: Time comes to us in moments, some good, some bad, most neutral; if you let the bad moments contaminate the neutral you give them too much power and if you let the bad soil the good you’re missing the point; embracing the uncertainty of not knowing bad news makes your day better.

When I made my decision to slow down back in February I also decided to bring music back into my life and buff up my saxophone skills by doing lessons with Diane.  On my last clinic day, she and her husband and my office nurse gave me a soprano sax.

(see my post

Over the course of ten surgeries, seventy-nine radiation treatments, fifteen hospitalizations, and thirty-eight CTs, Diane continues to look younger and younger.  She serves as a beacon of light and hope to all who know her.


Can a soprano beat a Naked Lady?

May 23, 2010

My spirits soar to the max

Here are a few of the facts:

     What gives me a lift

     Is the receipt of a gift,

A brand new soprano sax.

On my last afternoon of my last day of my last job my last patient, Diane, gave me permission to write about her.

We have known each other for decades.  She taught my oldest daughter trombone, my middle daughter saxophone, and my youngest daughter flute.  She has retired from her job as instrumental music teacher in the Sioux City Public School system.  To properly explain our relationship I would have to start with my music history.

When I graduated high school forty-two years ago and drove away, vowing never to return again, and sure to become a musician and composer, I could not have imagined a career besides music.

Passions die hard.  Two years later I embraced the conclusion that I had neither the talent to make my living that way nor the inclination to put up with the requirements of the job: chaos, salesmanship, and artistic compromise.

Proper attention to the craftsmanship of music, sometimes called practice, would have developed my marginal talent to the point where I could have made a marginal living. 

But I kept my saxophones.  I knew that my alto, a Selmer Mark VI, carried much more valuable than what I paid for it, but I had no idea about my tenor.

From time to time I brought my horns out when I needed to play, but I quit composing.

When my middle daughter, Chaya, entered in middle school and started instrumental music, she usurped my tenor sax.  On the first day of band, Diane heard snickering in the corner, and went to see what the fuss was about.

Chaya was showing off the engraving of a topless woman on the bell of the saxophone.  The teacher immediately recognized the instrument as a Naked Lady Conn, the jazz equivalent of a Stradivarius.

(At the risk of too many coincidences, my mother grew up in Elkhart, Indiana, where the instrument was manufactured.)

Chaya was bursting with the news over dinner.

I had no idea of the value of the horn, my grandmother purchased it for my at a pawn shop when I was 13; it took Diane’s knowledge to inform me.

I saved her life about six years ago by finding leiomyosarcoma, a malignancy so rare that it has no chemotherapy experience.  She has been teaching me a great deal about the nature of healing ever since.

When Chaya fell climbing three years ago, I discovered the value of embracing uncertainty.  Diane and I talk frequently about the things we do to live in the moment, about savoring the positive moments through the neutral moments, and not letting the negative moments last.

We speak often of the need to write her story into a screenplay; I become George Clooney, she becomes Nicole Kidman, and the surgeon at Mayo becomes Danny DaVito for comic relief.

Diane’s survival exceeds all expectations.  The quality of her life sines as a beacon to those who know her.  (Bethany and I ran into her and her husband, Lynn, at the movies the summer after her diagnosis; at age 45 she had been carded trying to get into an R-rated film.)  She and Cheryl, my office nurse for 20 years, have become close friends. 

When I made my career decision I decided to bring music back into my life and I asked Diane for saxophone lessons; she was going through a career change at the same time.  I still have the passion for the music but my expectations of being a star have faded.  I like playing scales, I don’t need fame.  But I couldn’t bring the instrument with me to the northern end of the continent.

Diane booked the last appointment of the day, to follow-up blood in the urine.

I relish the treat of finding a simple problem with a great patient at the end of a Friday afternoon, the cherry on an ice cream sundae.  When I walked into the exam room at 4:25, I found the dipstick urinalysis in the result cue of my computer.

We had chatted about the good news for a couple of minutes when Cheryl knocked on the door and entered, carrying a box with a card.

Of course it was a surprise. 

“Can I open it now?” I asked.

“The card,” they said, “Read the card now.”

ACHIEVEMENT started the platitudes on the front of the card.  I opened it and Pomp and Circumstance came out.  It was a graduation card.  We laughed.  Do great moments get better than this?

I used my key chain pocketknife to slit the tape on the blue wrapping paper.  I looked onto the top of the cardboard under the paper, and read the word Soprano.

Yes, great moments can and do get better, and sometimes they get so much better we have no imagination of it, and they become astounding moments. 

Cheryl, Diane, and Lynn had bought me a new B flat soprano sax.  Struck speechless and tearless, I stared.

I had wanted a soprano for forty-two years.  I didn’t buy one back then because I didn’t have the money, and when I had the money I didn’t have the time to play it.

Now I have time and money and an instrument small enough to put in my luggage.

I opened the case and the new brass and mother-of-pearl gleamed at me against the plush lining.

Diane walked me through the proper assemblage, how to put the reed in the mouthpiece and the mouth piece on the neck. 

I looked into the hallway.  Patients still here, rats!  No playing in the hallway. 

I shut the door and played a piece I’d written in 1970, forty years ago to the day.