The Lump

December of 1991 brought Christmas in Salt Lake City Utah. My husband was performing at the Pioneer Theatre Company as Jane/Lord Edgar in Irma Vep (the silliest, craziest confection ever to cross the footlights). I’d just finished work on Greencard (A happy film set, headed by Peter Weir), and decided to celebrate my freedom by doing a little holiday sale shopping. I had the whole day and Nordstrom’s was calling...

I chose a pretty red turtleneck sweater and pulled it on in the dressing room. I squinted at myself in the mirror. “Not this one,” I thought. “this one makes my neck look lumpy!” So I tried another. “Yuch. This sweater makes my neck look huge”. I quickly rejected the garment. Then I took another look in the mirror, and felt my heart jerk with panic. It wasn’t the sweaters that made my neck look big. The left side was swollen; a palpable bulge clearly showing in the bright florescent glow of the fitting area.

I chose a loose cowl-neck style that day, and wore it on the plane trip home to New York. I had health coverage through my union, but had never used it. I hurriedly chose a doctor at random, someone in my neighborhood. He was taking patients, so I booked an appointment and found myself facing a white-haired, white coated GP who muttered something about a “thyroid”, and “Hashimoto’s”. He ordered a sonogram of the neck, and a test for thyroid hormone level.

He prescribed Synthroid, a thyroid hormone replacement drug. He tried to explain that using this supplemental hormone might make my own thyroid correct itself; and also that it might cause the nodules that distended my neck to shrink. I later learned that this approach is rarely successful, but it was the only treatment I was offered.

Life on Synthroid

I dutifully took the Synthroid. At first, I didn’t notice anything. I felt my neck; still lumpy and swollen. I went to work, ate meals, slept at night and resembled a normal person. But after a week or two, my heart started jumping at odd moments, little Olympian sprints leading nowhere. Soon, it was galloping off on its own, making random circuits of some imaginary track, leaving me breathless and weak-limbed. By the third week on Synthroid, my heart was roaring along like a freight train, I was panting, sweating, and beginning to wonder if something might not be quite right. I called the doctor, who was sanguine and said, “Hmn.” Apparently nothing was amiss. I kept taking the prescribed dose.

By week five, the only difference between me and a cokehead was that my drugs were slightly cheaper. I sweated, I sped, my heart thundered. A crisp autumn day in Central Park found me working on a film set, carrying wardrobe from the portable dressing rooms (affectionally dubbed “the Honeywagon” in reference to the fragrant chemical toilets within) to the wardrobe truck. Just a normal, pleasant day at work... until a spear of ice raced from my chest down my left arm, numbing my hand and bringing me to my knees. I dropped the costume I was carrying. The pain was monumental, so fierce it nearly required its own zip code. A mule kicking me directly in the sternum would have been a gentle alternative to what I experienced in those few moments. After a brief snowstorm of unconsciousness, I picked up the costume, brushed the grass off it, and returned to work.

I called my doctor, who said, “Hmn”.

Some instinct for self-preservation lurched into action in my brain. I decided to reduce the amount of Synthroid on my own; gradually diminishing the quantity I was taking. Eventually I stopped altogether. I felt fine; just like myself, but the thyroid was still swollen.

What to do? Nothing, I decided. Dr. “Hmn” had shaken my trust in the medical profession.

Years passed. My health coverage changed with the vagaries of the economy, the union’s leadership, the stars above. Some times I had no coverage at all, sometimes I did, but always with a new plan and a fresh list of doctors. The bewildering alterations in my health coverage were an another effective deterrent to seeking care. Slowly, my thyroid grew.

I landed a steady job designing costumes for one of the “Law & Order” shows in 2001. It was a great gig, with terrific actors and the best group of producers I’ve encountered in 28 years in the film industry. Also, there were health benefits. I found a terrific doctor, Iris Sherman, who gamely tackled my health care after years of neglect.

“Your thyroid is... mushy,”, she commented. But not alarmingly so. Just unusual.

Dr. Sherman said this every visit for the next few years, her face momentarily creasing in concern as she palpated my neck. But it never seemed... urgent.

The Real Deal

I now had a gynecologist, thanks to steady health coverage through my job. Dr. Tepper, a charming, affable lover-of-newborns and all-round great doctor, peered at me from between the stirrups. “I’m going to send you to a breast expert”, he said. Well, all right. Now in my late 40’s, I knew that regular mammograms were essential, and my family history encouraged me to take special care in the breast department. “Dr. Lopchinsky is very good.” Tepper said, and sent me off to my savior.

Dr. Lopchinsky studied my cystic breasts, and suddenly said, “but what about this goiter?”

“Goiter? What’s a goiter?”

A goiter, it turns out, is an enlarged thyroid. Often, it’s caused by nodules imbedded in the thyroid gland. The thyroid gland embraces the neck like the wings of a butterfly, elegantly cupping the larynx, trachea and esophagus. Four tiny Parathyroids nestle behind this delicate arrangement. The pituitary gland sends messages to the thyroid in the form of TSH, or Thyroid Stimulation Hormone, telling the thyroid how much hormone to produce. This hormone drives the endocrine system. The parathyroids produce a different hormone, which, among other things, allows the body to absorb calcium. This complex, detailed mechanism is essential to the smooth operation of the human body.

And mine was completely fouled up.

Dr. Lopchinsky went into DEFCON 5 mode. He explained that my situation demanded serious thought and prompt action. The left lobe of my thyroid was now so enlarged that it was literally crushing my trachea; pushing my windpipe against the right side of my neck. A CAT scan revealed that there was significant distortion... I was breathing and swallowing, through an ever narrowing opening. The enlarged lobe extended below my sternum.

The First Surgery

So, after eighteen years, I was finally coaxed into taking action by my doctors, bless them all. A biopsy revealed "suspicious" tissue (for cancer), and the CAT scan showed a rather alarming, Godzilla-like image of a massive nodule and its many smaller brothers. My fatigue and shortness of breath of late was easily explained: the nodule had actually compressed my windpipe... so much for my shot at the New York City Marathon! It was time to take positive action.

My surgeon, rock star otolaryngologist Dr. Eric Genden, advised removing just the left lobe. This was great news, as losing only one wing of the butterfly-shaped gland might allow me to get by with little or no Thyroid hormone replacement therapy. You can't live without this essential substance, so keeping at least part of the manufacturing center open for business was important to me.

I timed my surgery to turn layoffs due to a screenwriter's strike to my advantage. How lucky to have a break in employment right when my thyroid problem reached its crisis point! I chose Monday, December 17th as D-day.

I turned myself in to the authorities at Mount Sinai Hospital early that morning. I was a grouchy camper, having been told not to eat or drink anything after midnight the night before. Anyone ever seen me without my morning coffee? Not so pretty.

It was hard to stay crabby with the pleasant staff, though. They've got the people-moving technique down to a science, as if the hospital was an airport - run by the Swiss. Or Disney. I was whisked through registration by Bonita, who promised me a Tiffany bracelet but delivered a blue plastic strip instead. Then I was ushered in to see Ruby in intake (where I was given a most unattractive garment to wear... I really should offer to design them something prettier). Ruby had had her thyroid removed several years ago by the surgeon who had mentored mine, and she proudly showed me her nearly-invisible scar (her secret? Vitamin E oil, for those of you taking notes). Then Michael, sporting a biker-themed head cover and huge diamond studs with his scrubs, led a small troop of us to pre-op, where we cooled our heels for a bit. I had a lovely chat with a man getting his vocal chords repaired by someone named “Dr. Woo”. Little did I know that within a few weeks... but more on that later.

A little avalanche of residents and surgical assistants fell on me, checking and rechecking who I was, and exactly what the plan was for surgery. I appreciated knowing that every time someone said “the left side?” the chances of waking up missing the wrong body part were reduced. They also gave me a very unattractive head-cover, probably to prevent me from escaping. Who would risk being seen in public in that get-up?

Then, dum-dum-de-dum, into the OR. The anesthesiologists were a real comedy duo, doing their best to distract me as they hustled me onto the skinny little table and poked me full of tubes. And, what else? Unattractive leg gaiters with little built-in massagers to keep the blood flowing. I had a bit of a panic attack at this point (Holy Cow, are they really going to do this? And make me wear all these unflattering paper garments? I must escape!) but my team saw that coming and were ready with a Happy Cocktail of Joy...

I opened my eyes and felt a tidal wave of well-being; euphoria, even. I knew exactly who I was and where I was and that I had come out on the other side just fine. A gentle voice reminded me to breathe through my nose... oh blessed oxygen! I was shivering with cold (the OR is kept frigid, otherwise the surgeons would sweat in all their layers of scrubs, fogging their masks) and instantly someone snugged a weightless blanket filled with hot air (ingenious, no?) around me. Mmmmm. Comfort. Hmmmm... just what pleasant drugs were they pumping into me? Something I'd never get in the local pharmacy, I thought, and felt joyful tears slip down my cheeks.

Time passed, and a cheerful little man materialized and drove my medi-mercedes to my room. And then, joy of joys! There was my husband, Davis! I looked a sight, with a giant bruise where the growth used to be and that darn paper outfit. But he pretended not to notice and could not have been sweeter or dearer to me. While I was in surgery, he had sensibly whiled away the time at the movies. I howled with laughter when he told me what film he had chosen - a new release called Sweeney Todd! What better film to enjoy while your beloved is getting her throat cut? We hugged and kissed and I sent him home. I wasn’t going to be sprung till the next day.

I had a shared room, and my poor cellmate wasn't faring as well as I. She'd been there for days and was very sick with post-surgical complications. I felt so lucky by comparison. And I was so hungry! Dear Alice the night-nurse took my plight very seriously, and magically conjured up a meal (how did she do that? Food service was over for the night). I dug in, eating the soft stuff, because it's a bit of a challenge to swallow after thyroid surgery. (For those of you taking notes.) And then she offered me a delicious little Percoset for dessert.

That was fortunate, because as everyone knows, you can't sleep in a hospital. The noise level, even at 3 AM, is about like rush hour in Penn Station; just not as relaxing. At least the helpful drug made me just flat-out not care. I did wander the halls a bit, chatting with the resident-on-duty, and with Alice, and used the circular floor plan for slow laps.

By the next morning, I was eager to go home. I was also eager to hear from my doctor how things really went. First, a tribe of residents trooped in to peer at me... not one of them looked older than fifteen. Then, because my voice sounded...odd...the youngest and most earnest-looking of them all appeared with a tiny fiberoptic camera to film my vocal cords (I'll spare you the details of how that's accomplished). And then Dr. Genden came in.

Smiling! No cancer had shown up on the pathology report! The growth was a monster, but benign. He did tell me that he'd never removed anything that large from a neck as small as mine; in fact, he said that when he finally wrestled it out, everyone in the OR burst into applause. I suspect he says that to every patient, but it did make me grin. I actually have a photo of the troublemaker (the thyroid; not Dr. Genden) and it is impressive.

Unfortunately, the monster goiter put up a fight and my left recurrent laryngeal nerve was damaged in the battle. I will never have the same voice again. Of course, if you'd ever heard me sing, you might think that the world has not suffered much of a loss!

Home. A good night’s sleep. A bracing cup of coffee. And, fortunately, no idea - yet - what I had lost.

I can't say enough in praise of the kind hands and hearts at Mount Sinai who guided me through this tough little moment of life.

The Second Surgery

It’s a staggering thought. Close to seven billion souls are leaping or strolling or crawling through life in eccentrically constructed soft machines called human bodies. My personal machine’s demanded a lot of me, and me of it, lately, and I’ve learned things about its I-bars and crossbeams and wiring that have all but knocked me to my knees with their peculiar beauty.

The left recurrent laryngeal nerve swoops around the arch of the aorta, the right one cradles the subclavian artery. A spiderwebby drawing, inked in demure pastels, traces these pathways in the pages of Grey’s Anatomy. The nerves of speech and breath are shown in soft yellow, illuminated against blue cartilage; overpowered by the bolder red of heart and throat muscle. But there it is. The voice really is connected to the heart. Is that why angry words contract the chest? And the warmth of I love you spreads outward toward fingers and knees and feet; great rolling waves of I love you pumping undiluted from its source?

Something about this crazy arrangement makes me happy. It’s nonsensical and impractical and absolutely perfectly right. Listening to Aretha Franklin sing, I imagine her vocal nerves crackling with power; her voice a straight shot from solar plexus to heaven. We all speak from the heart.

Except I couldn’t speak at all.

The morning after the thyroid surgery, Dr. Genden told me I had something called “vocal fold paralysis”. I had no idea what he was talking about. I laughed and said, “don’t worry, I’ll be singing opera in two weeks!”. But two weeks passed and I remained silent. Worse, I couldn’t swallow properly; I kept choking on my food. What was wrong?

I started researching those words, “vocal fold paralysis”. The more I learned, the more I realized that I would need help overcoming, or adjusting to, this condition. I arranged a follow-up appointment with Dr. Genden, and made a list of demands and requests and questions...

The moment he heard me wheeze my “hello”, he said, “This is very unusual. I’m certain I didn’t sever the nerve, but still, I’m devastated” I appreciated his candor, but what I wanted was action. Within minutes, he had called his colleague Dr. Woo and explained the situation... and within the hour I was at the Grabscheid Voice Center learning about my options.

Dr. Woo showed me a lovely color photo of my vocal cords. One was pearly and plump and smooth; the other completely collapsed, hanging uselessly like an empty sail. I eagerly scheduled surgery; Dr. Woo would plump up the dead cord with Cymetra™, allowing me to speak audibly while nature took its course and the nerve function returned. Or so we hoped.

On January 10th, 2008, I surrendered myself again to the good people of Mount Sinai Hospital. They’re slightly less sweet at 6 AM (my arrival time) than they are at more civilized hours of the day, but only slightly.

Lovely Gisette signed me in. Davis came with me, and held my hand, and distracted me with impromptu movie reviews and pithy critiques of last night’s nonevent: the Golden Globe awards. Grace in intake presented me with an outfit of unparalleled ugliness to wear, and made sure I stowed my things in the labeled plastic bags provided. From now on, I want Mount Sinai Hospital handling my luggage on every flight. I’ll bet they’ve never lost so much as a sock.

Rob, who looked exactly like a Hell’s Angel who’d for reasons of his own traded his leather jacket for baby blue scrubs, led me to the waiting area outside the OR. In the elevator I learned that it had snowed at his house last night, and that he thought it was beautiful.

A combination of pre-op panic and inexcusably poor memory skills robs me of the name of Dr. Woo’s acolyte, but she was precise and proper and succeeded in getting me to sign forms absolving everybody of everything if things went awry... “it’s very, very unlikely, but we do need to let you know about these possibilities...” Okay, okay. Who turns back at this point?

I recognized Dr. Reed, the anesthesiologist, from my recognizance work on the internet last night. Who could forget that great, goofy smile; how does a smile like that get attached to such an intelligent, keen face? He reassured me about my concerns, and I reassured him about my past success with anesthesia, and mutually buttressed, we advanced to the OR.

“Scrub Nurse” is an awful-sounding term. It did not do justice to the angel swathed in Tyvek and latex who laid the oxygen mask over my face and stroked my temples as if that mattered. Oh yes, it matters.

From Dr. Reed: you’ll feel a burning from the IV (mmm... warmth! Check!), you’ll get a funny feeling in your head (funny head! Check!), you’ll go to sleep (sleep! Che 

Waking up was the second most terrifying few minutes of my life. (The first most terrifying minutes have to do with arriving at the scene of Davis’ car accident years ago and seeing no Davis and a wad of metal where the car used to be. But that all turned out fine, so on with this story)

Once in Florida, a well-meaning, infinitely patient friend volunteered in a generous moment to teach me how to scuba dive. Excited, I helped haul six tons of vital equipment to the edge of a swimming pool, and watched, alert as the family dog under the infant’s high chair, as he explained all the nozzles and gages and alien parts. He helped me into the gear, into the pool, and into some rather embarrassing personal insight. Again and again, he showed me how to breathe, how to relax and let the beautifully designed system fulfill its destiny: keeping me alive and happy underwater...

And again and again I got completely flummoxed. Breath in through the... elbow? Ear? Exhale through the... navel? No, that didn’t work. UP! UP! What we had, here, was a failure to communicate. By which I mean a failure of my brain to communicate with my body. Uncoordinated as a roach on Raid, I gasped and wheezed and panicked and rose, dejected, to the surface. Poor Jim eventually gave up, and an hour later we were horking beer through our noses laughing about it. But I never tried scuba diving again.

In the recovery room, every breath was a battle, to be planned and carried through and won. If you’ve ever really choked on something, you know exactly the breed of terror that grabs your will and reason and everything you know about living, and tries its damnedest to kill all that dead. Drowning people go crazy, pulling their rescuers down in their frenzy. I was in the abyss. I. Could. Not. Breathe.

And then things got better, one labored minute at a time. Someone pulled the breathing tube out of my throat. Better. Someone adjusted the stream of cool mist flowing into my face. Better. Dr. Reed appeared and loomed kindly and cranelike over me, smiling. Better.

I hucked and hacked and made a noise like a Canada goose in mid coitus and did not suffocate. Better. And I said to myself over and over: your ancestors were Vikings. You can do this. You can do this. You can do this.

And of course I could do it.

I’m humbled by the will and power and enormous hearts of those who’ve gone through so much more than I have. My few minutes in hell were dramatic, but that’s all they were, just a few dramatic minutes. For those fighting cancer, or returning from Iraq with bodies blasted and souls shredded, for those born with genetic ticking bombs who struggle for every second of normalcy before succumbing, I am on my knees to you.

After a brisk ride in a no-frills sports utility wheelchair, I settled into a little dressing area and was reunited with my clothing and husband. Dr. Woo came grinning in, very happy with the outcome. Gently he laid his hands (“the best hands in the business”, Dr. Carroll once told me) on my throat and coaxed out a squawk, then a buzz, then a sound - like a voice!!!
I turned to Davis and croaked, I love you.

That night, I wrote:

Now I’m home, gratefully having coffee and soup and basking in the creature comforts of polarfleece socks and this computer. I still can’t really talk, but this time it’s because my job from now on is easing the newly reinforced cord into service. No Verdi, no Mozart, no Wagner (especially no Wagner!) but soon I’ll be speaking without passing out on the floor from the effort. Therapy continues; there will be many months of that, but eventually the surgeon and the therapist and I will sculpt a new voice from the ashes of the old. 

Milestones

Three months passed, then six, then a year. The hoped-for miracle hasn’t occurred. I didn’t wake up one morning spontaneously recovered, which happened to my friend Marilyn when she lost her voice after heart surgery. Acupuncture didn’t help me, the way it helped my friend Nancy when her voice simply disappeared one day. The nerve tried and tried; producing little synkenetic bursts of energy, giving me a voice for a tantalizing few minutes but never fully reconnecting. The Cymetra provides a scaffold, keeping the cord from collapsing, and excellent therapy helps me swallow, breathe, and use what remains of my voice to its best advantage. But the miracle never happened.

Except, a miracle did happen.

It happened when my coworkers and bosses decided to accept me just as I am, without pity or judgment. Life goes on.

It happened when a friend, concerned about my medical expenses, held a fundraiser for me that covered all of my out-of-pocket costs. To the penny. And now I have the joy of “paying it forward”, gradually sending that money on to the next person who needs it, and the next, and the next.

It happened when I realized that every single person, no matter how carefree or perfect their life appears, is faced with some kind of hidden crisis or challenge. We are all in this life together. Everyone is a hero sometimes.

And it happens every time my husband, my family, my friends, my coworkers, or total strangers offer me kindness, support, and cheerleading. People are good.

It can’t be a coincidence.

The actual medical term for breathing in is: INSPIRATION.

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