(Photo by Maria Teneva on Unsplash)

Surviving Tasteless Times

What my scars try to teach me

– By Pamela Edwards (Originally published on Medium.com)

For several weeks in early 2015, an ulcer in my mouth turned each meal into a small serving of misery. When I saw the doctor, he wasn’t concerned. “Come back in a month if it’s still bothering you,” he said.

Spoiler alert. Things get tasteless.

I should have listened to my body. Maybe I should have found a new doctor. But I was busy.

Busy. Busy. Busy.

When I returned to the doctor’s office a few weeks later, it hurt to say, “It’s getting worse.”

As he peered into my mouth, he grew quiet and took a biopsy.

You may think this is unspeakable

I would rather not talk about oral cancer. Is tumor humor just too tasteless?

During radiation treatment for jaw cancer, my taste buds were destroyed and I tasted nothing for three months. So I know I can survive without good taste. But only for a while. And now we all live in a pandemic of tastelessness, I feel qualified to take my experience quite literally.

Whereas in the past, I took things dis-figuratively.

The first round seemed like a big deal — at the time.

During a two-hour surgery to remove the squamous cell carcinoma, the surgeon removed part of my tongue and some lymph nodes. He took a skin graft from my thigh and laid it down like ready-lawn inside my raw mouth.

Do you know your genius skin cells have the potential to bloom where they are planted, anywhere on your body’s surface? This means skin grafted from your leg and transplanted on your tongue will sense its new role and cease to grow hair once re-homed inside your mouth.

You are more adaptable than you know.

But hair growing inside your mouth…that’s unspeakable! Making jokes about it…that’s just tasteless.

After oral surgery, it took discipline to eat. It was hard work. The only thing I could taste was the pain.

During recovery, I lost weight. Most weight loss programs demand self control. Not mine. Shedding thirty pounds in two months has never been easier, or harder.

For several months I had trouble speaking. I missed speaking without thinking. I missed eating without trying. Most of all, I missed taking my health for granted.

But nine months after surgery, I believed my cancer experience was an anomaly, a ‘blip.’ After a few months of healing and speech therapy I had a lisp, but I could talk and eat like a grown-up again.

I went back to life as normal.

I was busy.

Busy. Busy. Busy.

The second wave gets worse

Nine months after surgery, I discovered a lump under my left jaw.

“Most likely a tooth,” said the doctor.

Spoiler alert. It gets more painful.

The doctor recommended I see a dentist. The dentist recommended an endodontist. The endodontist wasn’t sure what was causing the lump, but preferring the diagnosis of an abscess, we agreed to proceed with a root canal.

In the history of root canals, no one has been more elated to have one than me. As I headed home after the appointment, numb but happy, I smiled a lopsided smile and drooled with relief. I had been worried that the lump might be cancer.

Three weeks later was a different story. After two needle biopsies and one core biopsy, we confirmed that the lump was in fact a recurrence. The day you get root canal is better than the day you get a cancer diagnosis.

Raised a Wasp, I have trouble crying. The next few weeks were an exception. I cried in my car. I cried in the elevator. I cried in yoga class. I cried at the hairdresser. I cried at the dry-cleaners. A few weeks later, when I was wheeled into the operating room, I cried.

Tough talk

Compared to the two-hour operation I’d had nine months earlier, the second surgery was a 10-hour marathon. Half my jawbone was removed. Bone from my fibula was used as a graft to rebuild my jaw.

Do you know your genius bones have the potential to bloom where they are planted, anywhere in your body? This means that bone transplanted from your fibula and re-homed in your jaw can flourish to become your new mandible.

You are more resilient than you know.

Waking in the fog of the recovery room, I retched up the contents of my empty stomach. Having wined for ten hours on general anesthetic, I had the worst hangover of my life.

The next seven days were a medical purgatory in a dim hospital room, wired with drips, a feeding tube, and a tracheostomy. Oxygen and machinery buzzed and hissed nearby.

The trach tube needed constant clearing. The drip-fed drugs made me nauseous. The nurses tipped cans of a food-like substance into a feeding tube. Flocks of residents rounded each morning and instructors brought groups of students to practice changing drip medications. Every hour of the day and night, someone wanted to do something to me — it was almost always unpleasant.

But I appreciated the rigorous care that the hospital provided. I was watched over 24/7 by a stream of nurses who had come to live in L.A. from around the world: Ahmed from Pakistan, Bina from the West Indies, Mariel from the Philippines, Yang from Taiwan, and Tammie from the Midwest. They encouraged me and cared for me. They shared hopeful stories about recovery. They celebrated my progress.

They guarded me from infection.

Visits from friends and family were a welcome joy. The surgical wounds and trach prevented me from speaking, but a thoughtful friend gave me an etch-a-sketch to write on, and along with hand gestures and mime, we managed to ‘talk’.

Those conversations were grateful spells of distraction and connection. I realize now, it was only the weave of those relationships that was holding me together. Conversations are deeper when we connect with compassion.

Radiating from my smile

After a few weeks of recovery, I went through a course of radiation and chemotherapy which unfortunately, destroys taste buds — but fortunately, only temporarily.

My ability to taste began to fade two weeks into the prescribed thirty sessions of radiation. I still had a sense of smell, but food was just a dull shape or vague texture in my mouth.

As my taste buds blinked out one by one, the last thing I tasted was a slice of lemon meringue pie made by a friend. It was bittersweet.

For several months — nothing. No tangy bite of apricot. No lush garden cucumber. No umami mystery. Along with good taste, I also lost my sense of humor — a world with no taste is just sad.

Meanwhile, the radiation damaged my throat. I couldn’t manage solid food. I wanted to nourish myself back to good health, maintain a healthy weight, but it was a challenge. Food was a bland fuel to force down. It was a liquid diet of disappointment, in a flavorless world.

Backtrack along your own timeline, and find your baby-self gurgling as she explores the world through her mouth, drooling with joy. As infants, we celebrate the wonder of life through our mouths. We discover that fingers, nipples, applesauce, and teddybears all taste different.

(Image by tookapic from Pixabay)

As well as taste, I longed for texture. I lusted after solid food. I wanted to experience the novelty of crunchy things again. One afternoon, as I forced down a flavorless protein shake, my husband snacked on potato chips. From across the room, I could hear his jaws grinding casually.

If I had had a voice to raise, I might have screamed in jealous rage. If I had the strength to throw a missile, I might have tossed my liquid lunch across the room.

Eventually, tastelessness will make you crazy.

Try to remember, this is temporary

My daughter reminded me that being taste-blind was temporary. Many people lose their sight or hearing, permanently. In my case, my taste buds would return, eventually, like swallows coming home in the spring.

She was right. Once the treatment ended, I began to recover. Gradually, I introduced solid foods and waited for my prodigal taste buds to return. It was not just sweetness I wanted. I longed for the bite of vinegar as much as the delight of fresh peaches.

Eating was still a challenge, and eating in company — at the grown-ups’ table — was a stretch. But friends invited us over for dinner, and it was at their table that I first tasted again.

I couldn’t taste the cauliflower and ginger soup, although the aroma was exciting. I couldn’t taste the baked halibut, but I savored its moist texture. But the instant I put a spoonful of chocolate mousse in my mouth, I received the creamy message of delight I had missed for so long. My taste buds were re-sprouting.

Do you know your taste buds are constantly dying off and regenerating? They are replaced every two weeks in a lifelong process of renewal?

You are more regenerative than you know.

Today, I like to think I have moderately good taste. When I sip a cup of tea, I know genmaicha from jasmine. At a summer picnic, I can appreciate a conversation between watermelon, feta and peppermint.

I savor life more than before, because happily, I am a survivor of oral cancer.

And I wonder at the lessons that tastelessness tries to teach me. Especially now, when we live in a pandemic of tastelessness — and we need to be more adaptable, more resilient and more regenerative than we thought we could be.

The symptoms of infection

One of the first symptoms of COVID-19 is the loss of taste. I haven’t had the virus, but I know that feeling in the pit of your stomach when you face a disease that might kill you. I know the raw anxiety of wondering if you will survive. What lies ahead? Hospital? Long term disability? Death?

During the COVID crisis, I’ve been thinking about my caregivers in hospital: Ahmed, Bina, Mariel, Yang and Tammie. Each relentless day, they and thousands like them continue to care for their patients. Telling hopeful stories. Celebrating progress. Guarding patients from infection. Risking their own lives.

During cancer treatment, my healthcare providers did everything they could to protect me from infections. So did friends and family. I was reliant on their rigorous efforts to care for my health, as much as my own efforts.

So today, I don’t hesitate to mask up to protect others from infection, and myself. Anything else seems like senseless disregard for the reality that we depend on each other to stay healthy.

Tastelessness comes in other flavors

As our daily schedules are reshaped by COVID, the zest for life fades. The days blur. The colors de-saturate. We long for the crunchy texture of novel experiences. Life under quarantine can be a diet of disappointment in a flavorless world. You can make out the dull shapes of the reality you’re trying to digest, but some days, it just tastes like dust.

We miss rushing out the door without thinking. We miss dining out without distancing. Most of all, we miss taking our community’s health for granted.

There is numb grief about sensations lost. We wonder if this blight will last forever.

But gradually we find new ways to stay in conversation. It’s only the weave of our relationships that holds us together. Conversations are deeper when connected with compassion.

We try to remember, this is temporary.

Some days, it’s bitter

Meanwhile, the pandemic is drawing back the veil on the structural violence of our society. We can no longer deny the cruel bones the economy is built on, as it crumbles. The silenced, the invisible, the incarcerated, the exploited. The tasteless cruelty. The narcissistic vulgarity. The tattered social fabric that leaves the vulnerable more exposed than ever.

It’s bitter.

Conversations are deeper when we connect with compassion.

And sitting in the comfort of my home, with the blessings of relative security, it would be beyond-tasteless to think this is all about my personal pain.

As my own recent healthcare distress fades into the past, I have more capacity to deepen my empathy for others, and take what action I can. At the heart of healing is the invitation for deeper compassion, and a call to listen and respond.

But until now, I was busy.

Busy. Busy. Busy.

We just want life to go back to normal

But this is not an anomaly, a ‘blip’. We live in a pandemic of tastelessness, in a tattered democracy, at the brink of climate collapse.

We realize now, that the old ‘normal’ was heartless, predatory and unhealthy.

And we pause to wonder: What would our community feel like if we protected the safety and dignity of each person? What voices do we need to amplify if we wish to heal? What would life taste like if we all shared in the flavors of hope?

What do tasteless times try to teach you?

That you are are stronger than you know.

That sharing compassion is at the heart of your healing.

That the weave of your relationships is what holds you together.

That you can be transplanted into hopeful times.

That you have regeneration in the marrow of your bones.

That renewal is on the tip of your tongue when you speak up for the future.

You are more adaptable, resilient and regenerative than you know.

As a survivor of tasteless times, I feel qualified to take my experiences quite literally.

And today, when I taste the plump divinity of a sun-ripened raspberry plucked fresh from the garden, I want life’s nourishing sweetness to be something we can all share.


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Surviving Tasteless Times by Pamela Edwards of EcoFaith’s Storytelling Cohort