The Impatient Patient

Foreword: There Won’t Be Blood 2016

I’d been having dizzy spells for a week. I spent Wednesday in the hospital getting checked out by a neurologist, after a night when my bedroom was spinning.

Since I was a rational man, I knew it wasn’t spinning—or was it? Did Spinoza spin? Was playing Spin the Bottle spinning, or sinning? Were the players spinsters? Was Spin the Tail on the Donkey animal abuse? And what about Spin and Marty?

Turns out I had vertigo of the inner ear, which the doctor informed me, usually attacks women over seventy-five. And this was an eye-opener (or an ear-opener). I now know that I am a seventy-five-year-old woman named Jeanie. It explains a lot: mood swings, my desire to wear see-through women’s yoga pants, my “boys” are actually “girls,” my appendage is a clitoris.

I joked my way through a physical. After all, I was planning to live for—

“You are anemic,” the doctor said. “Let’s take a urine sample.”

Days later, a phone call: “The sample is troubling. We need to examine your prostate.”

I had a ‘high’ PSA reading, 7-point-something. A follow-up MRI study identified a small tumor. It was prostate cancer.

Genehouse (my blog) Scribble: “I have prostate and skin cancers; I’ve paid my dues—leave me alone—word!”

Universe rebuttal: Yeah, right.

Bruce J. Friedman’s ribald play Steambath is set in a men’s steam bath attended to by a Puerto Rican attendant, who, we find out, is God. The bathers are terrified; they’re in purgatory. They watch as the bath attendant twirls a globe and says things like: “See that little girl in the backseat of a car, Route 66 in New Mexico? Make the car have an accident and kill the girl. See that woman crying in Jersey because she has cancer? Heal her.”

I relate. You go, I go, we all go. Many of my friends are confident that a cloud community called Heaven awaits. Some imagine a “steam bath” called Hell. (I’ve been bad, real bad, but not that bad.) What we do know, from Sir Arthur Eddington et al., is that we are collections of atoms, atoms move and reform. An atom floating in the universe doesn’t have a favorite football team, nor does it care about my secret love, Helena Bonham Carter, or clam chowder or red wine. All those are as ephemeral as it gets.

Writer Samuel R. Delany: [Poetry is]. . . “the incantatory task of naming non-existent objects.”

1. Falling Thursday, January 9, 2023

I was headed home from a hike, climbing north up the Clifton Terrace bluff road (no sidewalks), away from the Mississippi River. A speeding car came down the steep ess curve of the hill, passing within a few inches of me. I dove to my left, landing on my face and stomach, smashing my sunglasses, my hands and forearms cut from the detritus of sticks and rocks and glass shards.

A vanload of men stopped, bless them, jumped out, stopped traffic, picked me up, and carried me to their van and drove me up the hill to my house. They were headed for New Orleans. They joked: Would I like to join them?

The driver who tried to kill me drove on, turning left on the Great River Road.

An hour later, I was in the St. Anthony Hospital’s ER in Alton, Illinois, my hometown. Patients filled the waiting room. A homeless woman lay on a bench under a blanket and sang to herself. A young Black woman comforted her mother whose bare feet were bloody.

I spent seven hours waiting, never seeing a doctor. CT scans of my neck (I have a titanium plate in my neck) and right knee were negative. I could barely move. Intense pain. Severe arthritis from years of wilderness hiking. Getting old is an art form unto itself. A discharge nurse, who had been calm as patient after patient tried to get her attention, thanked me for not verbally abusing her.

Come spring, my neck still bothered me. I couldn’t move it side to side. My doctor, Craig Harms, saw me, prescribed muscle relaxers, and ordered an MRI. The result indicated that there was further damage to my neck, above the plate area. I made an appointment with a spine specialist.

A separate paragraph contained this message. “Detected a mass in the patient’s throat. Attention required.” Within days, I had a CT scan which confirmed the mass. There was a seventy percent chance that the mass was some sort of infection.

I called a former student of mine, Kim, now a nurse, and she said that ‘mass’ is a coverall, an overused word that physicians use. Odds were I’d be fine.

On May 18th, ear, nose, and throat specialist Dr. Mary Shinkel performed a biopsy on the mass. It required me to be anesthetized, and I spent several days in considerable discomfort. Before the surgery, Mary, using a mirror, showed me the growth inside my throat. It was blood red and bulbous, like an alien creature on Star Trek. My throbbing neck wouldn’t allow me to sleep, my throat couldn’t tolerate solid food, and I was taking muscle relaxers and Percocet every few hours.

Tuesday, May 23. Mary and her attending nurse joined me in the patient room. In five minutes, I heard that word once again: cancer. Tears spurted out of me. Mary and her nurse embraced me. The next day’s PET scan would reveal the stage of the cancer and the treatment. Radiation was already being arranged.

On Facebook, I posted the following: The cancer fight begins. This is my third bout, and I’m pissed. Because:

1. I hold the Kale Institute National Kale (KINK) award for eating fistfuls of kale like
Lucky Charms.

2. The Spinach Foundation awarded me the Popeye Award.

3. The Oatmeal Quarterly awarded me the June “Lazy Bastard for Eating Microwaved
Instant Oats” prize.

4. The Beef Council named me “Commie of the Year.”
(Okay, so the Sauerkraut, Mushroom, and Artichoke Triad (SMART) named me
“Chickenshit of the Century.” Bite me.)

The American Cancer Society named me “Chump of the Year Senior Division for Believing in Nutrition.” (The Alton Library cited me for “Old Man Reading Seventeen Magazine.” What does that have to do with cancer? God punished me.)

This is scientific evidence that eating healthy is bad for you.

I recall working as a drama teacher at Washington Irving School in Chicago. A seventh-grade student got bone cancer. Her knee was removed, and a rod attached from hip to foot inserted into the leg. When she returned to school, bald and on crutches, she and I and some classmates wrote a play, One Girl’s Fight with Cancer. It was performed at all the teaching hospitals in the city, and it was published by Johns Hopkins University Press.

I take nothing for granted now, a three-cancer pilgrim searching for divination. Ahead, if there is an ahead, comes radiation treatments, yearly PET scans

until

To the car driver who almost killed me: You may have saved my life.

2. James Killion Day, Keynote Address Saturday, May 27

Alton Riverbender.com May 25: “Killion Day this Saturday Will Feature
Well-Known Author/Poet as Keynote Speaker”
(OMG. Hyperbole. I am the ‘Well-Known Author Poet.’ Sheeit.)

I posted on Facebook: “James Killion Day is this Saturday. The Keynote
Speaker, a well-known Author/Poet, isn’t able to attend. In their place
is little-known Author/Poet E Eugene Jones Baldwin.”
(Sarcasm—low self-esteem—is my trade.)

I was scheduled to deliver the keynote address for James Killion Day in my hometown of Alton, Illinois, honoring a WWII Black soldier, his subsequent role as the first Black union representative in our town, and remembering his son Jimmy Killion, my friend and co-author of the book A Black Soldier’s Letters Home. Jimmy died suddenly a few months ago.

But I was caught up in my cancer biopsy from May 18, in considerable pain, hoarse. Fear raged in me. For days, I pondered whether I could even deliver the speech. I hadn’t written a word. I wrote the Facebook post to force myself to go on.

Then the essay rattled around in my head, and I sat down and wrote it in one sitting. No way was anyone going to read this speech but me. I had dedicated my career to the cause of writing about white racism, and here was a receptive audience.

I didn’t talk for a couple of days, then I let rip the speech.

The James Boys (excerpt)

“My family moved from Belleville to Alton when I was entering ninth grade. We knew nothing about the town’s civil rights struggles in the fifties. Or Miles Davis, but then no students knew about Miles because Miles was never mentioned in music class, civics, or any other class. Some of my Black classmates had attended segregated elementary schools, but white students didn’t know that.

“I moved to Chicago and began to write plays. A whole new, diverse world opened up to me. I met Black playwrights August Wilson, Mustafa Matura, and Steve Carter. I worked as producer and interviewer for the National Tuskegee Airmen Oral History Project. In 2000, I was commissioned to write a play about the Underground Railroad in Illinois. . .”

I spoke about Martin Luther King Jr. Day, 2006, the keynote speaker African-American writer and historian Glennette Tilley Turner. I had used portions of Turner’s book The Underground Railroad in Illinois as research for my play, commissioned by the National Park Service. After her speech, we dined at a mansion across the street. Gwen told me Doctor King stayed in this house once. I was sitting in the chair he sat in. The place setting was his place setting used for certain special occasions. My butt caught fire.

I talked about standing at Dr. King’s pulpit at Ebenezer Baptist Church in Montgomery, Alabama, invited by docent Wanda Battle to speak the refrain of Reverend King’s speech: “How Long? Too Long!” The pulpit had been used in the film “Selma,” and David Oyelowo, who played Martin, had autographed it.

And I told of my work on the National Tuskegee Airmen Oral History Project, about my great-great-grandfather William Holman Jones, a conductor of the Michigan Underground Railroad, and his friendship with John Brown in “Bleeding Kansas.”

By 2012, I couldn’t afford Chicago. I moved back to Alton. Bonnie Fox, of “The Legacy Project” for the Alton YWCA asked me to direct a monologue play about the civil rights pioneers of our town.

At the funeral of one pioneer, Josephine Beckwith, African-American judge Duane Bailey took me by the arm. If you have not already figured it out, he told me, God sent you home from Chicago to write about the struggles. I said I was the wrong color for such a project. Duane answered with what became the title of my work-in-progress: There is no color in justice.

The crowd applauded.

“. . . Mr. Killion died the consummate “race man” leaving behind a considerable legacy of service to his country and his home. The Killions and their allies helped organize the Civil Rights strategies of the fifties.

“I only wish I could have met James Killion Jr. His son “Jimmy Boy” was my friend and colleague. We had plans for future projects. Oh, how I miss him. I will not say I loved him, past tense. I love him.”

I drove home after my speech, lay in bed, and cried, for Jimmy who had recently died. And for my new cancer.

3. Cancer Humor Tuesday, May 9

Lying in a tube, Radiation Department at Alton Memorial Hospital. I’m injected with an isotope that circulates and looks for tumors.

Finished.

Male Nurse: “Do you want the good news or the bad news?”

Gene: “The bad news.”

Male Nurse: “We have to do the scan again.”

Gene (ready to explode): “You’re kidding me.”

Male Nurse: “The good news is, yes, I am kidding you.”

Prick.

4. National Donut Day Friday, June 2

I met radiation oncologist and Washington University professor Wade Thorstad. We shared a few laughs about papillomaviruses. He told me that seventy percent of adults over fifty carry the virus. One percent get cancer. At last, I was a one percent-er! Turns out that surgeons and rock singers (I played “Judas” in Jesus Christ Superstar, in the seventies) have a lot in common.

Wade offered me two options. Full radiation five days a week for some forty visits. Or: surgery, which would cut down considerably the number of radiation treatments. He referred me to his colleague, surgeon Ryan Jackson, at Barnes Jewish Hospital (BJC).

“Your cancer has not spread, but we may need to start radiation to get rid of three throat nodule areas.

“I know you’re upset. Rightly so. This is National Donut Day, Gene, and I order you to go out and get a donut.”

For once in my life I obeyed orders.

As a cunning linguist, I thought about words. Scary words of the medical community (ironically, doctors and nurses butcher the English language). How single words (and homophones) can confuse.

Oxford English Dictionary words I have added to my vocabulary:

1. “Mass”: “a lump in the body which may or may not be cancerous.”

2. Tumor: “a swelling of a part of the body, generally without inflammation, caused an
abnormal growth of tissue, whether benign or malignant.”

3. Benign: “Benign tumors are those that stay in their primary location.”

4. Malignant: “Malignant tumors have cells that grow uncontrollably that grow locally
and/or spread to distant sites.”

5. Human papillomavirus (CDC): “HPV can cause cervical and other cancers including
cancer of the vulva, vagina, penis, or anus. It can also cause cancer in the back of the
throat (called oropharyngeal cancer). This can include the base of the tongue and tonsils.
Cancer often takes years, even decades, to develop after a person gets HPV.”

So, a girlfriend back in the sixties gave me a “forever” gift, the slut. Actually, I was the slut. I’ve been waiting all my adult life for Nature’s retribution re: my youthful indiscretions. I wouldn’t have been surprised had someone knocked on my door and told me I was their father. I was stupefied when a non-human visitor, HPV, ghostlike, penetrated my body. I took to my bed in total panic.

5. Panic

I live in the darkness of light
I live in the still of the wind
In the blindness of sight
In the hush of birdsong
In the sere of the rain . . .
There is pain

I live at the bottom of breast
I live on the slope of the hip
In the crack of the kiss
In the numbness of touch
(In the sere of the rain) . . .
There is pain there is pain

I live in the void of the moon
I live in the softness of stones
In the flightness of wings
In the breath of dead leaves
(In the sere of the rain) . . .
There is pain there is pain there is pain

I live in the heat of the ice
I live in the waking of sleep
In the salt of spring flowers
In the perfume of blight
In the space of time
In the time of space
In the walk of the race
(In the sere of the rain) . . .
There is pain there is pain there is pain there is pain

I live in the darkness of light
I live in the still of
I live in the blindness
The hush of
The sere:

There

6. Trust My Divination Friday, June 9

I am a hiker. I walk along the Mississippi River several times a week, 20-30 miles. I write about nature and “River Rats,” colorful people who live here.

This morning’s walk began with discovering a box turtle, a swallowtail butterfly perched on its shell. The two rested together shell to wing in the forest shadows. I wondered if they were dating. I took a photo and walked on, nine a.m., the day sunny and hot and humid.

I carry a thermos of water with me now and drink frequently. There are well spigots in the prairie patch along the way, connected to the Alton water supply, and I fill up and stay hydrated.

The wildflowers were pushing up, cresting in early July, home to butterflies and bees. I checked for snakes, none so far. If I see a snake on the path, I relocate it so some idiot, showing off for his pals, can’t kill the reptile. Last summer I found a beheaded snake. An apprentice serial killer had tested his skills.

I came to the spot where last Sunday I saw a mountain lion emerge from the forest and run down to the creek below. There have been multiple sightings of lions, several from the adjoining Oblate Fathers retreat home. Much of the land around LaVista Park is owned by a Land Trust. A clever mammal staying within those boundaries can be relatively unmolested. A bear came through last year, and two black wolves.

I heard a bird call and response that was breathtaking. First singer: Are you there? Second singer a few trees away: Are you there? First singer: Are you there? Second singer: I am here. I am here. Sometimes they talked over each other. I never saw them, but I know a love song—I remember a love song—when I hear one.

At the back entrance to the park, I noticed a huge yellow chalk display on the path reading “TRUST MY DIVINATION” in large block letters. Ancient Celtic peoples believed in divination. Perhaps the chalk artist was Scottish or had recently watched Game of Thrones. Perhaps a cult lurked within the wooded park and was waiting for an old person to eat. If so, I escaped.

I left the forest and walked south toward the mirror of the river, glassy and still. A huge wave of pelicans circled overhead in the unfocused sky, today being a pollution day, and haze overshadowed the blue.

A huge roar came from the Great River Road, and at least thirty vintage sports cars drove by, probably headed for Gomorrah—I mean Grafton—mostly driven by yelping older men. They honked their horns and shouted and filled all the lanes. Party!

(The graveyards packed with rotting partiers from a Thornton Wilder play: o pity the young.)

West, toward Clifton Park, and a stop for water. Then back east up the long dark hill in the woods, buffalo gnats dive bombing and landing on the inside of my sunglass lenses. I reached the top, two hundred feet above the highway. Back down again to the LaVista Park entrance, once more seeing “TRUST MY DIVINATION.” Hmm.

Who should emerge from the forest but my friend Gil and Ghost Dog (Tessa). We stopped and talked, snow white Ghost Dog munched treats, and there came another trail friend, Michael, owner of Slinky the cat. Three old men, bird talk, lion talk, snake talk. No dames.

“Look at us,” Michael said, “standing in the sunlight, cool shade right behind us.”

We laughed and broke up the party, and I climbed north up the winding path to the open fields where I had seen the turtle and the butterfly. Alas, they were making love in the trees—so I imagined—and had sought privacy.

Question of the day: how does a butterfly mate with a turtle? Question Two: Does my pondering Question One make me a pervert? I will dwell on these matters on another hike—if there is another hike, another day, another reunion with my friends, another banana, another beer, another coffee.

Here is my divination: I had no symptoms of throat cancer; it was found on an MRI image of my neck. If the reckless driver hadn’t nearly hit me, if I hadn’t fallen, hadn’t injured my neck, the cancer would have grown undetected

until

7. Pray Love Eat Tuesday, June 13

The behemoth known as Barnes Jewish Hospital, in St. Louis, across from Forest Park and the St. Louis Zoo. Huge cranes lift building materials to the naked floors of yet another addition. Barnes is noted for world-class doctors. But not world-class patient rooms, and there isn’t enough staff to man existing buildings much less new ones. The American capitalist mantra: “In grow we trust.” Until we run out of space.

I had just finished my consultation with my oncologist, Ryan Jackson. Surgery, including removal of my neck lymph nodes, was set for June 26. Two more appointments, pre-op, and a CT scan were next.

I got on the 11th floor elevator as did a man pushing his elderly dad with one good leg and a stump, in a wheelchair. The old gentleman tugged on my shirt and said, “Excuse me, sir. You look like something bad happened.”

“I have cancer,” I said.

“I hope you won’t be offended,” the man said. “May I pray with you?” I didn’t want that, but I told him yes. He took hold of my right hand in his two hands and prayed out loud. “God, I want you to heal this man.”

The elevator opened on the tenth floor and three people walked in, and the man kept praying. A woman asked what was going on. The son of the old man whispered in her ear. Two more floors down the door opened again and another three people crowded in around us. They watched the joined hands. I watched the old gentleman, now in love with him.

The elevator opened on the third floor. The son said, “Dad, our floor.” The old man kept praying. All the other people stepped around and out the door. Others tried to enter. The son pushed the close button then the stop button, and he guarded us until his dad said amen.

The old gentleman, as he was being pushed out, said to me, “Young man, you fight. I did, and God saved me.”

I thanked them. They disappeared into the madding crowd. At the first floor, I walked onto my pre-op and chatted with a nurse. “How are you feeling?” she asked. I cried.

She closed her notebook, leaned in, and listened.

8. My Way Not Frank’s Way Tuesday, June 20

1. And now, Depends are here
And so I face that lymph node cutting,
My friend, my neck will sear
And so I state I’m through with slutting
I lived a life not dull
I ate at Joe’s diner every Friday,
And more, much more than this,
I got high my way.

Middle: Yes, there were times I’m sure you saw
When I choked on your organic Coleslaw
But through it all I when I would pout
I chewed it up and shit it out
I faced it all, drove to the mall and got high my way.

2. Egrets: I’ve seen a few,
And girlie flicks too few to mention,
I sniffed a lot of glue,
I threw up on you, and sensed your tension,
I told my priest my sinful tale,
He passed out and fell down sideways,
And more, much, much more,
I got high my way.

Middle: For what is a man, his pronoun “he,”
But not himself perhaps a “she,”
To say the thing he truly feels,
Cancer sucks, and so do high heels
Let the record shows I also wore pantyhose
And got high my way.

9. Gaia Friday, June 23

I took a last nature hike before surgery, avoiding people but embracing trees and elderberry vines. I’ve been walking this trail for ten years and seen a lot of wildlife except. . . skunks. Today, Pepe Le Pew stepped out of the woods and made a beeline (actually, skunk line) straight at me.

I stopped, and Pepe, a beautiful black and white boy or girl or trans skunk, stopped. I waited. Then Pepe crossed the path and back into the east woods. He/she/they didn’t raise his/her/their tail, and neither did I raise mine. A woman and her three pre-teen daughters and a couple holding hands all stopped and oohed and told me how brave I was.

Brave? Delighted. Then out galloped three fawns, following Pepe’s trail, their white tails flappy, and they pranced. And the people walked by me and said how they were afraid of skunks. In the future, humans will be hermetically sealed against fear.

Me, I neither pranced nor trotted nor even walked fast. I kept patting my belly because I knew that a feeding tube will be there Monday, stitches holding it in, liquids only for a week or so. I knew I won’t be able to talk for a spell, and I’ll be in Barnes Hospital for three or four days. And there was my insomniac’s fear.

Down the trail, much cooler in the woods, but the humidity caused rivulets of sweat to pour down my face. I whistled duets with a cardinal and some nuthatches, and I stopped and marveled at every insect that ran across the path, and I listened to some honeybees doing porno buzz on the elderberry bushes. Up and down a bluff hill then back in the woods. I stopped at the water snake dens along the creek and was rewarded with an encounter with a sunning snake. We admired each other, then I headed for the car.

My friend Gil and Ghost Dog came out of the woods and walked with me. There were women volunteers working in the prairie remnant and Gil and I filled our water bottles at the pump. One of the volunteers called out, “Is that Gene? Gene, it’s Rachael!” I knew Rachael and her boyfriend Greg back in the day. Her son David, when he was little, went on eagle watches with me, and we hiked and acted silly—you know, dad stuff.

Rachael told Gil and the other volunteers that I was the best man with kids she ever knew. David is now twenty-one. I sang at Rachel and Greg’s wedding years ago. Can it be, I have lived here for a decade. I was a young sixty-five-year-old then.

Gil and Ghost Dog walked back into the woods; Rachael and two other women volunteers went back to work. I drove to the local convenience store for a giant iced tea, and twelve-year-old Kalee, a charming girl whose grandma works there, waited on me, and she gave me a free chocolate chip cookie.

Back home, my brother from another mother, Harold Gates, called me, and we talked about meditation and calmness, things I will need in the coming days. Harold is Black, a retired professor. We went to high school together but weren’t friends. Now we talk weekly about race and trade books, and we are the best of friends. How I love him.

Pepe La Pew was an archangel, I decided just as likely to be Jesus Christ as those phony white Jesus images that hang in churches. I also decided that today Cherry Garcia ice cream would enter my life. I will not NOT! pour ice cream or wine into the goddamn feeding tube.

10. Slice and Dice Monday, June 26

My friends John and Judy Hartleroad arrive at my house at 4:30 am. Judy and I have been friends since high school. Yesterday, she and John drove up from their home in Nashville to be with me before surgery.

Judy: “You called us late the week before to tell us that the hospital had contacted you to
say your surgery had been scheduled earlier in the day so you needed to be at the
hospital at 5:30 am.

“We arrived in Alton Sunday evening. You asked us to call you Monday morning at 4:00
am to make sure you were up. You texted me Monday morning at 4:07 just as I was
preparing to call you. We arrived at your house at 4:30.

“We arrived at the hospital, were parked, and standing in line at the guest check-in at
5:28. Directed to the surgery registration down the hall where we waited in line, and you
were told by a very polite woman that you were early as your surgery was not scheduled
until 9:30.

“We sat down and waited (not an easy thing to do) until nearly 8:00 am when they called
you back for prep. We were not allowed to accompany you any further. You thanked us
and told us you loved us. We love you, too. I texted David at 8:51 to let him know that
you were where you needed to be. He phoned us at 1:51 to tell us he had talked to Dr.
Jackson; the surgery had gone well, and you were in Recovery. You would go to your
room later.

“Knowing that you would not be awake for a long time, we left the city with a plan to
return the next morning.”

11. Mr. White Monday, June 26

I lay in the semidarkness, separated by a thin curtain from my patient roommate. I hurt in every way possible, having undergone four hours of surgery (I didn’t know that then) to remove cancer from my neck and throat. A robot removed one tumor, cutting away an inch of my tongue. Only weeks later did I know the specifics of the robot, holding and moving my head in ways I could never move, stretching my mouth to unnatural positions, twisting my neck. It would take a week to overcome the muscle of the robot on my body.

Dr. Jackson, my surgeon, removed three lymph nodes, one of which was cancerous, through cuts on both sides of my neck. I looked like I had been in a knife fight. I was drugged, a catheter ferried urine. Migraine headaches, which are still with me, began their attack.

It was my first night of three, and just being away from my home set me in a panic. The roommate had his TV on, the sound loud, and hospital regulations, so I was told, keeping nurses from turning off TVs or lowering the sound.

A woman doctor in a lab coat entered the room, glanced at me, and stopped at the roommate’s bed. I don’t recall his name. Call him Mr. White.

“Mr. White,” the doctor said, “I’m back. We need to decide now. If you put it off any longer, your cancer will spread. I have to remove your vocal cords. Now.”

Mr. White whined and cried. It felt as though I were in a horror movie. Mr. White said repeatedly, “My wife, my wife, my wife.”

The doctor told him about various devices that would allow him to communicate. The alternative was death. Their voices modulated, Mr. White weeping. The talk went on for fifteen minutes.

I lay just feet away, terrified for Mr. White, and yes, selfishly, I was terrified for me, scared shitless from the frank talk, waiting for a doctor to come in and address me and tell me I was dying, so drugged that I was in an alternative universe.

12. Judy Tuesday, June 27

“You called me at 7:00 am on Tuesday morning. I had already checked visiting hours and
they were from 7:30 am to 9:30 pm. We were at the hospital with you for over an hour.
You had a feeding tube in your nose and a drainage tube on either side of your neck.
Your right cheek looked red and sore but I did not ask you about it so I don't know if it
was painful at that time. You also had an IV in.

“A dietician tech came in to tell you that you could have a liquid diet for lunch. There
were other caregivers in and out, but we didn't see the doctor, or his PA.

“Then a speech therapist came in. First she spent some time with your roommate then
came over to assess your ability to swallow. I was very surprised that you were able to
swallow without pain. She gave you something to drink, then some apple sauce, then
some crackers softened in apple sauce. You didn’t have any problems swallowing
anything. She said that they would remove the feeding tube and you would be able to
have a soft diet which would include soft fruits and cooked vegetables. She also talked
about you possibly being discharged the next day.

“Finally, a dietician came in to discuss what foods you would be able to tolerate and
swallow and she took an order for your lunch that included chicken.

“I texted David at 11:00 am to let him know that we had visited with you in your room
and that you were doing ‘amazingly well.’”

I have no memory of this. I am deep in the dark of drugs, watching ocular migraines melt the walls, the people, melting the windows. I am pricked with needles, tubes dangling from me, voices mere echoes, exhausted from the long night with Mr. White. I don’t remember nurses or therapists. . . or Judy and John sitting with me.

By morning, Mr. White was gone. Two days later, I was discharged. My friend Ramona met me and drove me home.

What of Mr. White, voiceless by now, his fears, his concern that his wife won’t. . . what? Fear is palpable, the place in the brain where knowledge and mystery of death resides.

We are a symbol tribe, and, unfortunately, reptiles are our demons, and further on, fate and dreams and faith and night fears (bats are the victims). Hell comes late. There is no mention of Hell in the Old Testament. “Go to hell” is as meaningful a phrase as “Go to Walmart.” This, historically, to frighten women and children into “behaving” while the patriarchs revel at the brothel.

Mr. White, I pray that you and your wife are close and that your love defeats your fear. And that you invent and “speak” a language, and may you Go to the Universe and ponder.

13. Boss This Sunday, July 2

Barnes Hospital has few private rooms. Both my roommates wailed in pain all night. There were some very nice nurses. My physician called me “Boss.” I hate being called Boss.

Came home on Wednesday. Left home by ambulance on Thursday, admitted into Alton Memorial.

Swallowing felt like metal gear pieces shredding me.

Back home Friday. Friends on Facebook were asking for updates. The surgery was painful and debilitating. I had two drain tubes stitched into my throat, dangling off my chest. A “glitch” between Barnes Hospital and their Home Nurse division. No one came to check on me. I was alone and terrified. I slept about twenty hours a day. Deeply drugged. I hallucinated: fairy lihgjts fillin myu huse (take that, Mr. Joyce), animals running about, two radios playing two symphonies. Rimsky Korsakov sat on my bed, wept, and talked to me, how we might turn my horror into a cantata.

My dearest friend, Dave Mulvey, talking on the phone from California last night and hearing how crazy I sound: “Oh my god, you can’t be alone.”

I said don’t worry about it. Ten minutes later he had booked a flight from San Luis Obispo arriving here at two this very day.

Dave’s main job was to get me to eat. I didn’t want to eat. Just looking inside the food pantry made me want to puke. Even Ben and Jerry’s Cherry Garcia, my favorite ice cream, made me nauseous just thinking about it. I drank three Ensures a day, nothing else. Swallowing while recovering from a tongue section cut out of my mouth was as painful as it gets. I ran small fevers. I took oxycontin and slept and slept.

At night we watched films. Dave loved American Splendor, the story of eccentric cartoonist Harvey Pekar, played by the great Paul Giamatti. His film Sideways is set along the California coast, close to David’s home in Atascadero.

We watched birds at my feeders, and Dave marveled at a giant groundhog which lived under my side porch. I granted him (Dave, not the groundhog) naming rights, and he declared the rodent to be known henceforth as Matt the Groundhog.

Still, no home care nurses showed up. We called daily and got no commitment. We visited my hiking spot, LaVista Park. We strolled in the woods, but I could only walk a quarter mile round trip before I was exhausted. On one of the walks, we met my old friends Brian (he resembles Albert Einstein, complete with a mop of white hair), and his wife Missy and their visiting daughter and her baby, from New Jersey. A year ago, Brian and Missy and their neighbor Michael would meet me on the Great River Road path, and we’d walk and talk.

Not being able to hike (still can’t) saddened me. Dave reminded me to be patient, but I was an impatient patient of cancer. Car rides (Dave drove) were my entertainment.

Under advice from a nutritionist, that I was losing too much weight, Dave went to the store and bought cinnamon rolls, ice cream, fruit bars, and other enticements. They sort of worked, but I had to force myself to eat them.

14. Freaks Monday, July 3

After surgery, I had a large scar on both sides of my neck. Below each scar was an implanted port anchored with stitches. Hanging from the ports were plastic tubes that reached to my belly button. At the ends of the tubes were clear oval bulbs which received excess blood from the surgery sites. Each day, I had to detach and empty the bulbs in the sink. Hold a tube at the top, run fingers of the other hand down the bulb, forcing the blood to drain into bulbs.

Walking in public was like being in Todd Browning’s 1932 film Freaks, controversial for using real people with disabilities as circus performers. People would stare then glance quickly away at the old man with blood-filled tubes hanging from his throat. Children gawked—of course they did.

Dave called Lisa Shoemaker, Dr. Jackson’s right-hand nurse, and asked how long my “ornaments” needed to be attached. She told us to drive to Barnes in St. Louis today and she would attend to me.

Lisa, bless her, cut the stitches, pulled out the tubes and bulbs, and bandaged the wounds. By late afternoon I was less freakish, as less freakish as an old man can be. All the way home, to Dave’s annoyance, I hoarse-voiced sang I Feel Pretty.

15. Mirror, Mirror Friday, July 7

I marvel, revel even, in my ugliness,
Cancer scars across my neck
I once was pretty (my dance instructor
Mrs. Parrs would say Gene, you are
too pretty to be a boy).
The ugliness of my life, of course,
Flings and booze and miscegenation,
(Right, Barbara Jean?
I know: too late for Confession.)
The hundred lovers feel me
The crowd in the cheap seats
We love Judas who is Gene
The thousand fiery friendos.
But now the slices of torn neck the
Plucked lymph nodes the pinched
Prostate, the bone breaks, the once
A week shit the death sign in the window,
The bald pate, the endless cancers
Tearing one to bits and blood and bile,
No Jesus to comfort one (Dog bless him),
The rot began before the burial, the suck.
My memories all of callow youth
Fucking on gravestones and church altars.
(Right, Betsy?
I know: No star meld, we’ll forget,
Watch our surgeons glow with arrogance
Watch our nurses wash our asses)

16. A Mucus Brief Saturday, July 8

I hadn’t had coffee or alcohol (red wine) for three weeks. A nutritionist at the hospital finally said coffee intake could resume. I set my coffee maker for two cups, watched the liquid percolate. I sat across from friend David and let the coffee cool a bit. And took my first sip.

And screamed. The coffee didn’t taste like coffee. It set my throat and tongue on fire. Mucus gushed out of my nose and mouth. I put a towel against my face. David drove me to the Alton Memorial hospital emergency room. I spewed mucus and yelped while we sat and waited for help, and I was aware that other patients were watching me.

A couple of hours later, the pain had morphed from excruciating to soreness.

A week ago, a young cleaning woman was sent to my house by an agency. She was cheerful, if not ambitious. Most of the first hour she stood in the kitchen and perused her phone.

She spent an hour wiping the kitchen counters. David saw her pulling cleaning stuff from underneath the sink. She took the coffee machine apart and scrubbed the pot and the water receptacle. We didn’t know what chemicals she used, but we knew she didn’t rinse, and I knew I had swallowed Mr. Clean or Windex or some other beverage.

Eight hours later, we drove back home. The house cleaner did not return.

17. The Hunger Game Sunday, July 9

Dave is eating his bran flakes breakfast when I wake up. I walk into the kitchen and announce, “I’m hungry.”

There should have been church bells celebrating my declaration. Bells, car horns, fireworks.

I’m hungry.

Dave grins and says, “Alright!”

I wolf down two cinnamon rolls and drink two Ensures, and suddenly I feel hopeful. Dave, who is diabetic, steals a cinnamon roll. We decide to take a scenic drive west and north through Calhoun County, almost an island, its boundaries the Mississippi River to the west, the Illinois River east. The long lines of bluffs on both sides, farms dotting the land in between.

We arrive in the hamlet of Hardin, on the Illinois River, and stop at a restaurant known for brisket and barbeque. The place is filled with folks stopping by after church, teenage waitresses in shorts walking the aisles with plates of food. A man and his dog sit in the indoor patio, the dog sitting on the table, the two of them chowing down.

A very nice waitress brings me samples, to see what my tongue and throat will tolerate. The brisket wins, a side of green beans. I eat until I’m stuffed. We stroll down to the river’s edge and take a selfie.

We drive back home from celebrating Day 1 of my return to eating.

The next day, a nurse named Kathy from the Barnes Hospital Home Nursing unit visits us at my home. She takes my vitals and weighs me, and that is how I find out I have lost over fifteen pounds. Kathy is warm and engaging, and she (finally!) sets up a schedule of home visits.

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19. The Angel of Swallowing Wednesday, July 12

I have an appointment at Barnes Hospital, follow up with my surgeon Dr. Jackson.

David is in touch with a group of my closest friends. He sends them email updates, as I can’t talk more than a whisper:

Dave: “We had great news from our visit today at Barnes hospital. Gene’s surgeon (Dr.
Jackson) stated that the results of the surgery were excellent. The tumor removed from
the back of his tongue came out with clean margins (no evidence of spread). Only one of
the lymph nodes removed showed any evidence of cancer. His surgeon stated that he
may well need no further treatment (just continuing follow-up).

“Gene does have the option of going forward with radiation therapy, which might
further reduce the risk of a recurrence. He will meet later with his Radiation Oncologist
to review those options but is leaning toward just regular monitoring.

“While we were checking in at the medical center, Gene was informed that he also had
an appointment with a Speech Therapist. This was a surprise as Gene had no problem
speaking anymore. The clerk explained that the Speech Therapist also does swallowing
evaluations. We went to the appointment with little in the way of expectations. Boy,
were we surprised. The therapist (Linda Neal) turned out to be a really delightful person
who explained a lot about why the post-surgical period was so painful.

“Apparently, the robot that did the tongue surgery needed a lot of room to work, which
was facilitated by tongue depressors and other instruments used to keep the surgical
field in his throat open. New information for us.

“She then proceeded to test Gene on eating a variety of foods. Pudding—no problem—
Lorna Dune cookie started a coughing fit. She asked if that happened often, and Gene said it did. She said I have a suggestion for you. Sit back in the chair, hold your shoulders straight and before swallowing turn your head as far as you can in the direction of the surgical site. Gene did and instantly had a huge smile on his face. No pain or difficulty swallowing. He immediately tried other foods with the same result. It was like magic. The Speech Therapist (who specializes in helping throat surgery patients like Gene
explained that turning his head compresses the throat on the side of the surgery and
allows food to go easily down the uninjured side.

“Gene is still struggling with head pain which may be his old seasonal migraines or
migraine pain related to his surgery. The surgeon gave his OK to try his migraine
medication to relieve the problem. The jury is still out on that.”

I owe a debt of gratitude to the kind and compassionate Lisa Shoemaker, Dr. Jackson’s go-to nurse, who answered every one of my anxiety phone calls and calmed me, and to Linda Neal, angel of swallowing. I will never forget them.

The next morning, Dave heads home. Our time together led to long talks and revealed secrets, much laughter, looking through my old scrapbooks (remember those?) and posting photos of me as a young actor at Monticello College in The Fantasticks (the Boy), and “the Boyfriend” in The Boy Friend. The college brought in Jeanne Beauvais (she starred with Julie Andrews in the Boy Friend Broadway production and was roommates with Paul Newman in the Carnegie Hall Apartments). Jeanne and I became friends until her death.

20. Joy Friday, July 14

Nicole, my visiting social worker, spends two hours talking to me and arranging help with house cleaning, lawn mowing, transportation, and other help as needed.

As she prepared to leave, Nicole asked, “What brings you joy?”

Without missing a beat, I said, “Birds.”

Indeed, I am the god of seeds, for finches and nuthatches and chickadees and thrashers and cardinals and bluebirds and three species of woodpecker and mourning doves, and I am the god of sustenance for ruby-throated hummingbirds.

As soon as Nicole drove off, I wrote this:

Joy
What gives you joy, my nurse asks,
And I tell her: Birds.
This morning I look out a window
Hold to the ground and shred
A finch to pieces, tiny white feathers aloft
And gliding in circles.
I walk to the site in deep grass,
Neither bone nor head nor gut,
Nor legs; just feathers,
And since birds give me joy
I must rejoice that the hawk has fed
And the baby finch has sacrificed
And played its role.

21. HBC Saturday, July 15

I use a cane and walk slowly down to the mailbox. Inside is an envelope with no return address. I walk back to the house, sit in the living room, and open the envelope.

Inside is a greeting card, the cover of which displays colorful representations of flowers in a green vase. On the vase is written, “Hope Today is one of the Good Days.”

Inside the card is a beautifully written note: “Oh darling, Gene, do pep up soon! Yours, Helena Bonham Carter.”

My blog readers know, I reference Ms. Carter, whom I think is a babe, every once in a while. I posted a photo of the message on Facebook. Responses poured in, half-sure that I am friends with HBC, half posting ha-ha emojis for what they assume is a joke.

The card makes my day. “I have to admit: I’m feeling better.”

22. Incoming Sunday, July 16

Facebook Post:

“I must calculate my every move, from walking or turning or sitting. I can only eat or
drink or swallow if I turn my head to the far right (it closes off the injury). I must think
about eating, every bite. As for drinking, I must hold a cup or glass and watch it come to
my mouth and make sure it’s going in my mouth.

“This morning, while on the phone with my friend Kay in Wisconsin, I pulled my coffee
cup toward my mouth, forgot it, and poured it on my stomach and ‘boys.’”

“Photos available upon request.”

The next day, Mike Hartmann, son of my deceased friend Orville, brings me a giant homemade chicken pot pie that his daughter Meghan made for me. The mailman comes an hour later bearing a package from friend Kay containing banana bread, and jars of strawberry jam and applesauce.

23. While Contemplating a Muffin Thursday, July 20

No radiation. My surgeon and radiologist say ninety percent certainty the cancer is gone. Tests in November.

Weighed in this morning after stuffing myself last week. 177 pounds, down from 180, down from 195 before surgery. I eat a celebratory blueberry muffin.

Send pie.

That night, 2:30, there is a knock on my bedroom door. A weary female voice. . . “Gene?” Three more knocks. “Gene? Are you awake?”

I lie and watch, my eyelids mere slits. The door opens. A shadowy woman dressed in a black Victorian mourning dress stands and watches me. I play dead. My great-great grandmother, Katherine Messick Jones, closes the door. Her abolitionist husband William visits me often, once whispering to me, “I have a story to tell.”

I awake the next morning. The bedroom door is open, as always. It was my first dream since surgery.

I talked with several of you the day I got the cancer news. Within minutes, quite a number of people volunteered to help. I am not alone. Was it Jesus who said, “Humor deflects, absolute humor deflects absolutely?”

No.

24. This is a Test Monday, July 24, 7:30 am

The north end of LaVista Park. Several acres of open fields are before me. Tree plantings line the parking lot and the upper trail. Beyond, down a long, steep hill is the woods. It’s a sunny day, eighty degrees, a heat wave coming, high nineties.

My surgery was four weeks ago today. I only started eating two weeks ago. I’d been house-bound since my friend Dave left for his California home. Yesterday, I walked gingerly in the woods for half a mile. I use my mulberry cane to steady myself, my dizziness and migraine headaches making me cautious.

I stand at an imaginary starting line. Black western hat, a holey blue pocket tee, sunglasses, jeans shorts, cell phone in left front pocket, water bottle jammed top first into the right back pocket. I carry the mulberry cane, good for fighting off women and/or steadying wobbly walking as needed.

I’m off—if slow walking can be said to be ‘off.’ The trail is one mile long, the steep descent lined with high wooded hills and bluffs, creeks below, leading hikers to the Mississippi River and the Great River Road, Missouri a mile across the way. In the nineteenth century, escaping slaves swam across the river or were ferried by boat to Illinois. Ten thousand years ago First People forged this path.

A hundred yards to the south of the parking lot is an oasis, a tree grove, two water pumps, benches, a prairie remnant currently awash waist high in brown-eyed susans and tall grasses. I fill my bottle at a pump and walk on.

Memorial metal benches with memory plaques line the west side of the trail, one of them named for a little girl named Grace, killed by a car in front of her driveway, several years ago. Further on, a grove of older oak trees are jammed together, thanks to a well-meaning but inept planter years ago, some of the tree trunks bent in their efforts to find sunlight.

I reach the woods, the trail dropping and winding east and west. A cicada choir is joined by yacking nuthatches perched upside down on tree trunks. Their calls and responses always sound urgent. Chipmunks scurry across the path. What is missing from the scene are butterflies in numbers. A few tiger swallowtails flit around searching for flowers. I haven’t seen a single monarch. Other years, they swarmed the path. Precious few dragonflies can be seen.

Birds abound. . . owls, woodpeckers, songbirds, wood ducks. This warming day, the woods shelter an old man recovering from cancer, testing himself after a month indoors.

A cheerful, sweaty, middle-aged man climbs the hill, greeting me in passing. I am hyper aware that what goes down the hill must go back up.

Five weeks ago, I hiked twenty to thirty miles a week, including climbing multiple bluff hills. That was then. My goal is to get to the river, turn around and head back.

“Goal.” Ambition, purpose. Sheer human folly.

I stop frequently for water breaks. Sweat bees and gnats hover around me. I am caught up in watching the path, the woods familiar, and I know where the water snakes and fox dens are, the tall tree with a hole at the top where lives a barred owl, the shallow waterfall, the wood duck house. Beyond the south gate is the river.

I reach the gate, glance at the Missouri tree line, turn to go back. . . and stop.

And look. Turkey vulture shadows across the trail as the bald birds glide and look for death. Before me is a beautiful forest smelling of honeysuckle and wildflowers, the sound of pileated woodpeckers hammering at trees and trilling their Woody Woodpecker songs. I think of a Bible verse: “Consider the lilies of the field.”

And then I hear the Leonard Cohen poem, made into song by indigenous musician Buffy Sainte-Marie: “God is alive, magic is afoot,” and I repeat the mantra and walk forward, no dizziness or fear. I stop to watch ants and stick bugs and beetles crossing the path. “God is alive, magic is afoot” A bluetail skink suns itself. A box turtle meanders through leaf detritus. Bird mates call and respond, cardinals and goldfinches and chickadees. “Many hurt men wondered/Many struck men bled.” Tears stream down my cheeks. I am alive and filled with wonder. A month ago I was sure I would die from cancer. And maybe I will, and I’ll die anyway, but not today. Not today. “God is alive, magic is afoot.”

I reach the long hill and climb, stopping halfway up and sitting on a park bench. Two women—I call them the “stick ladies,” for their colorful walking sticks—come up the hill and stop, and we chat. One of them takes a photo of me to share with a friend who is about to have throat surgery. John the biker arrives, and he joins the conversation. “But Magic is no instrument/Magic is the end.”

The ladies climb on, and John walks with me, and we stop to pet a dog, and we reach the top of the hill, and I know I am healing, getting stronger, and I want to get home and write about this trial walk. John rides away on his bike. I reach the parking lot and think about iced tea and chocolate chip cookies. “God is alive, magic is afoot.”

At home, I open the computer, click on YouTube, and listen to Buffy St. Marie sing her astounding song. I am alive.

And I write.

E Eugene Jones Baldwin