A Constellation of Mutations
A few weeks before my son's surgery to remove a sarcoma, as I was getting my daily fix of Apocalypse from the national news -- the pandemic of the unvaccinated, mutants of concern, killer wasps, fire tornadoes, disappearing species, rising seas, stupidity and suicides -- my last remaining wisdom tooth, abscessed and erupted, struck me with the worst pain of my life.
Even though it lasted only a few seconds, it gave me enough time to string together my favorite swear words in startling creative ways.
Holy Mother of Shit, I may have began. I will spare you the downward spiral that followed, only to say it ended with me crying out for Mommy and maybe Jesus.
Quickly dissipated, the memory of the pain lingered like a meme of Hannibal Lecter imagining a vintage Chianti and black beans with perfectly seasoned human liver.
You never know when unimaginable pain might strike.
HANNIBEL LECTER
When I shared my experience with Ethan, our 29-year-old middle child, he said, Looks like we might both be going under the knife.
Both surgeries are considered routine -- the removal of an infected tooth and a sarcoma, an almost always benign tumor of connective tissue.
Routine, that is, except for someone like me with a deeply embedded and quite reasonable phobia of dentists. During my first childhood visit, listening to a patient scream in the waiting room of Dr. Spitler, I asked my Mom, an otherwise kind and wise woman, Why did you choose a dentist with that name?
The way too easy amalgam of Spit and Hitler should have been enough of a clue for my mother that nothing good would come from a dentist named Spitler sticking sharp objects and drill bits into the mouth of one of her children.
Here are a few of the horrors I remember, often in sweat-soaked nightmares, from my visits to the office of Dr. Spitler --
Once, while working on a cavity, Dr. Spitler drilled my lip instead of my tooth, causing me to sport a mustache for camouflage after I was through puberty.
Occasionally, he would whistle like a construction worker googling boobs when I hacked up an impressive glob of blood into Spitler's bowl.
Frequently, he would sing songs in German over the grind of drill and suck of blood-drain, no doubt anthems to the Motherland.
Always, his breath smelled like I imagined skunk piss.
Shall we begin?, he would lean over and ask.
To this day, I remember how strange the gag reflex felt rising up in a mouth too numb to elucidate prayers for God's mercy.
Whenever I think back on my childhood dentist, this is close to what I imagine:
For my entire adult life, I abstained from dentists. A phobia, I was about to learn, provides a poor space for pain management.
•
Following a February appointment with a family doctor on his health care plan, Ethan was advised to go on a dairy-free diet as an RX for a small lump in his groin. Six months later, milkshakes and cheesecakes habitually sacrificed, the lump had grown to 5 inches. A second opinion -- from a dermatologist -- led to a biopsy revealing a sarcoma, a tumor of connective tissue. A physician's assistant, by way of encouragement, told us sarcomas are almost always benign.
Just to be safe, the doctor told my son, we need to do a surgery to remove the tumor so we can completely rule out cancer.
A few days before Ethan's surgery, my strategy to avoid my own -- to wait out my wisdom tooth -- came to an inevitable and excruciating end. After my infected tooth released a bolt of pain, I made a sound like you hear in a nature documentary, say an Impala in the jaws of a lion.
When the pain finally resided a few minutes later, I thought of Gene Wilder as Young Frankenstein locked in with The Creature.
YOUNG FRANKENSTIEN
When I shared my experience with Ethan, our 29-year-old middle child, he said, Looks like we might both be going under the knife.
Both surgeries are considered routine -- the removal of an infected tooth and a sarcoma, an almost always benign tumor of connective tissue.
Routine, that is, except for someone like me with a deeply embedded and quite reasonable phobia of dentists. During my first childhood visit, listening to a patient scream in the waiting room of Dr. Spitler, I asked my Mom, an otherwise kind and wise woman, Why did you choose a dentist with that name?
The way too easy amalgam of Spit and Hitler should have been enough of a clue for my mother that nothing good would come from a dentist named Spitler sticking sharp objects and drill bits into the mouth of one of her children.
Here are a few of the horrors I remember, often in sweat-soaked nightmares, from my visits to the office of Dr. Spitler --
Once, while working on a cavity, Dr. Spitler drilled my lip instead of my tooth, causing me to sport a mustache for camouflage after I was through puberty.
Occasionally, he would whistle like a construction worker googling boobs when I hacked up an impressive glob of blood into Spitler's bowl.
Frequently, he would sing songs in German over the grind of drill and suck of blood-drain, no doubt anthems to the Motherland.
Always, his breath smelled like I imagined skunk piss.
Shall we begin?, he would lean over and ask.
To this day, I remember how strange the gag reflex felt rising up in a mouth too numb to elucidate prayers for God's mercy.
Whenever I think back on my childhood dentist, this is close to what I imagine:
For my entire adult life, I abstained from dentists. A phobia, I was about to learn, provides a poor space for pain management.
•
Following a February appointment with a family doctor on his health care plan, Ethan was advised to go on a dairy-free diet as an RX for a small lump in his groin. Six months later, milkshakes and cheesecakes habitually sacrificed, the lump had grown to 5 inches. A second opinion -- from a dermatologist -- led to a biopsy revealing a sarcoma, a tumor of connective tissue. A physician's assistant, by way of encouragement, told us sarcomas are almost always benign.
Just to be safe, the doctor told my son, we need to do a surgery to remove the tumor so we can completely rule out cancer.
A few days before Ethan's surgery, my strategy to avoid my own -- to wait out my wisdom tooth -- came to an inevitable and excruciating end. After my infected tooth released a bolt of pain, I made a sound like you hear in a nature documentary, say an Impala in the jaws of a lion.
When the pain finally resided a few minutes later, I thought of Gene Wilder as Young Frankenstein locked in with The Creature.
https://vimeo.com/616374756
For the first time in my adult life, I scheduled an appointment with a dentist. Just to be safe, I chose one with the name of Rogers. I figured he would be kind to me when I visited him in the neighborhood of my worst nightmare.
•
After surgery to remove my son's tumor, the surgeon shared the news as both good and bad. The good news was they saw clean margins, meaning there was no evidence of any cancer spreading locally. The bad news was, within the tumor, aggressive cancer cells had been discovered.
Just to be safe, the doctor told my son, we will need to do a PET scan to rule out metastasis.
Ethan's second surgery, a week later involved placing a skin graft to cover the 6-inch wound. Cutting a triangle of skin from his abdomen, the surgeon "flipped" it over the wound, grafting to the area with a blood supply.
As parents, we are never prepared to see our children suffer. Melanie and I were also inexperienced; our family had never faced ongoing intense physical pain. We could not imagine how painful the nature of a skin graft would be, an organ dense with nerve endings.
Because he could not sit or drive, we brought Ehtan home to his old room, hooked up his X-Box to our giant Hi Def, bought him Neil Gaiman and Carlos Ruiz Zafon books, and did what we could to make things more bearable. Fortunately, his employer provides great health insurance and promised full pay for whatever time he needed to heal.
He just had to get through the pain.
As his father, my chief concern for Ethan, so gentle and giving, was his ability to stand up against adversity.
When we looked through his photo albums, Melanie and I were impressed again with his sensitive nature to care.
https://vimeo.com/manage/videos/634028004
*
As Ethan tells us the story of his encounter with the night nurse, whom he named Ratched, I slowly realize how much I had underestimated his bad-ass potential.
Four hours after waiting for a room, I met my night nurse, who immediately pointed at my mouth, our son tells us the day after his second skin graft surgery. I was in a drug daze and a lot of pain, and I didn’t have a clue what she meant.
With a drawl somewhere between drunk, redneck, and angry German, Ethan says Nurse Ratched demanded he remove his facemask.
Right after surgery in a hospital overrun with Covid, Ethan laughs. I mean does that sound like sound medical advice?
At this point in telling the story of Ratched, I read my son’s eyes and understood the plot twist – the war is on.
Ethan went on to explain how it got much weirder.
Waking up in terrible pain, he pressed the button for a nurse, which was ignored for hours. She finally appeared with a demand: In exchange for pain medicine, he first had to get out of his hospital bed and walk around.
When my gentle son firmly told her to piss off, she went to the foot of his bed and began pulling his legs to get him up.
Hail, I get 80 yar ols walken to piss cupa awers afta sergry, Nurse Ratched said to him by way of explanation.
While Ethan worked to translate, Ratched continued to yank on his legs.
I mean like she was manhandling me Dad, my son told me, fighting a laugh, before continuing.
Even with a bloody abdomen and grafted wound, he wrestled himself away from Nurse Ratched. You are a crazy person, leave me alone, Ethan told Nurse Ratched before she waddled off to find another, more cooperative, patient to torture.
Listening to my son finish his One Flew Over the Cuckoo's Nest story, I told him how proud of him I was. I never again worried if pain would overwhelm him. This young man was ready for a fight.
•
Unfortunately, Ethan endured more than a few Get-Me-the-Hell-Out-of-Here moments -- continual adjustments of tubes draining wounds; ongoing change of bandages, getting in and out of bed, sitting, bending, laughing, coughing, sneezing.
With great pride and grief, Melanie and I watched our son persevere through pain with a combination of tenacity, kindness and grace that stunned us.
My wife, Ethan's mother, once again, displayed high energy grace fueled by self-giving love. Melanie makes it look so damn easy, but it's the hardest thing in the world to do. For those of you who know her, you understand the care she pours into our son.
As for me, I entered into my son’s suffering from the perspective of a deepening depression. After hiding under a heavy blanket of dark shadow, I questioned if I would be much good to my son in his battle with cancer.
Surrounded by a gathering of dark forces, Gandalf reminded the halfling, Pippen —
There never was much hope. Just a fool’s hope.
Two years into a global pandemic, amid the viral spread of disease and division, the face of Jesus snarling in culture wars, I was holding on to just such a hope the best I could.
•
On the evening Ethan first changed the dressing on his skin graft wound, I browsed the internet and listened to a cable news report focused on the possibility of a Covid variant escaping immunity. One medical expert, quoting a WHO report, without a hint of panic, said:
We look for a constellation of mutations that indicate potential properties of immune escape.
I was fascinated by the dark poetry of the words -- a constellation of mutations. Facing global consequences of disease, unraveling division, planetary and humanitarian abuse, it serves as an image for our age.
Googling Constellation of Mutations, it appeared in one definition of cancer.
All cancer is the result of a constellation of gene mutations. Mutations may be caused by aging, exposure to chemicals, radiation, hormones or other factors in the body and the environment. Over time, a number of mutations may occur in a single cell, allowing it to divide and grow in a way that becomes a cancer.
I never finished my search as my son's screams of pain called me to him.
•
While desperately trying to change the dressing of his skin graft for the first time, ripping scar tissue, I heard Ethan crying through the bathroom door as much in confusion as pain. With no instructions or tools, he had no clue how to end the searing pain. With his wound stretching from groin to abdomen, Melanie and I could not invade his privacy to help.
My wife has learned to see my freaked face. She suggested -- for the sake of all -- I take our grown puppy for a walk.
Fighting back tears, my phone rang while I was walking Freddy. My dear friend, Saundra Cuyler, was calling to check in.
When she asked me how I was doing, I replied, Not so good.
When she asked me if I was praying, I responded, Can't do it right now.
Can you sit still and do nothing?, she asked.
Champion at that, I responded.
•
In the Pisgah National Forest, along the Davidson River, a place of sanctuary, I returned to my habit of meeting with God, drinking in his beauty. Over the years, I had learned a sacred spot where I could praise God in worship or scream my anger, mostly likely scaring away scores to trout fishers and at least one pack of Girl Scouts..
I came to tell God I was on fumes. Exhausted to my soul, I couldn't even work up a rant. White water singing over black rock, I felt the mist that always cooled me.
I can't pray, I whisper.
But I could be still, listen, see, empty myself. All I asked of God was evidence of his presence. As soon I whispered this seed of prayer, a Red-Spotted Purple Butterfly landed on my hand.
Wings luminous aqua blue on the outside, red spotted on the inside, precisely fluttering, I sat stunned. I wondered how a creature velvet and delicate navigated wind gusts without ripping apart. I spent more than 30 minutes entranced. Probing my skin with an antenna, it showed no fear, only staggering grace. Undisturbed by any danger, the butterfly gave full to display of its beauty through the frame of my iPhone's camera.
https://vimeo.com/633831995
Given the reality I seldom bathe since Covid, I could have attributed the attraction as a smelly buildup up of pheromones, except for the feeling of peace spreading through me. I could not dismiss the impeccable timing, pernacity, and beauty of such a lovely creature as anything less than divine.
When I finally got up to leave, the butterfly followed, flying circles around me as I returned to my car.
OK, God, I said, now you are just showing off.
On my way home, I stopped to get Ethan a meal at Zaxby's. As I was pulling into the drive-through, Saundra called me back to see how I was doing. I started to weep uncontrollably while telling her the story of my visitation from the Red-Spotted Purple Butterfly.
May I take your order? a young lady asked, voice crackling in the speaker.
I told Saundra I would call her back.
Still crying loudly, I ordered a Big Zax Snack.
Arriving at the window, I handed a very concerned girl my credit card.
God knows they don't pay her enough, I remember thinking, rapidly washing away my tears.
Are you OK?, she asked gently.
I smiled and told her I was just really hungry.
•
Inspired by my son's tenacity, I stuck a knife into my childhood dentist phobia. When my oral surgeon turned the laughing gas on, I even riffed on Dr. Spitler. In less than 20 minutes, with no pain, the offending wisdom tooth was extracted.
Mouth numb, still drooling, I mumbled thanks to Mr. Rogers for being so gentle.
On my ride home, I reminded myself: Shit Happens, but not as often as you imagine.
In the fear of Young Frankenstein's Creature and the hissed threat of Hannibal Lecter, the debilitating power of fear resides in its anticipation. Braced against the mere possibility of pain, we often steer ourselves to the worst outcome, wasting energy needed when suffering finally finds us. Cocooned in the fear of the future (or regret of the past), we miss the beauty and grace blooming around us in every moment.
My great niece, an amazing artist, has photo and video of the Red-Spotted Purple Butterfly I met when I could not pray. She plans to paint it, offering a canvas as a Christmas gift and reminder: Be Still and See. We plan to hang it next to the family photo of our children.
•
Twenty-three days after his first surgery, I took Ethan to an appointment for his PET scan, which would determine if the cancer had spread. Much to his surprise, we learned the results would come on the same or next day. Following his appointment, against my objections about rushing recovery, I drove Ethan to Western Carolina University. Having enrolled in the fall pursuing a Social Work degree, he was eager to get on with his life.
Arriving home, exhausted from his class, Ethan hugged his brother, Taylor, who had come to encourage him. When Ethan's iPhone rang, he disappeared into the hallway.
We held our collective breath.
A very long minute later, our son returned to tell us the scans were completely cancer free.
A group cry of great joy followed.