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Warrior
Patient
Heartbeats


How to Beat
Deadly Diseases
With Laughter,
Good Doctors,
Love, and Guts.


Edition II of “Warrior Patient”


Copyright © 2018 (Edition II) by Temple Emmet Williams

Cover and design © 2018 (revised) by Templeworks Properties LLC

Edited © 2018 (Edition II) by Kerstin Ingegerd Williams


All rights reserved. No part of this book may be reproduced in any form or by any electronic or mechanical means, which includes information storage and retrieval systems (except in the case of brief quotations embodied in critical articles or reviews). Duplication requires permission in writing from either the publisher, Templeworks Properties LLC, or from the author, Temple Emmet Williams.


This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then please return to your favorite ebook retailer and purchase your own copy. Thank you for respecting the hard work of this author.



Published by Templeworks Properties LLC

3755 Mykonos Court, Boca Raton, Florida 33487

(561) 241-6323 Fax: (561) 241-6358 Text: (561) 251-6187


http://www.templeworks.biz

http://www.warriorpatient.com

e-mail: temple@warriorpatient.com or temple@templeworks.biz


Williams, Temple Emmet

Warrior Patient Heartbeats: How to Beat Deadly Diseases With

Laughter, Good Doctors, Love, and Guts.


1. Memoir 2. Autobiography 3. Health and Wellness 4. Cancer


ISBN-13: 978-0-9968920-8-7

Library of Congress Control Number: 2015903455


I dedicate this book to
Kerstin Ingegerd Williams,
who has been saving my life
since the first day we met.


Books by Temple Emmet Williams


Fiction

Wrinkled Heartbeats

Poison Heartbeats

Non-Fiction

Warrior Patient

Warrior Patient Heartbeats (Edition II)


Table of Contents


An important note about the Cover

Chapter 1: The Fall

Chapter 2: You Have Cancer

Chapter 3: The Catheter Wars

Chapter 4: Celebration, Florida

Chapter 5: A Growing Business

Chapter 6: “Come Home.”

Chapter 7: Hands Of Death And Destruction

Chapter 8: Celebration ReDux

Chapter 9: Emergency Fever

Chapter 10: Plug Into Dialysis

Chapter 11: Cheating Death

Chapter 12: Sergeant Rhyder

Chapter 13: Wraparound Shingles

Chapter 14: A Smiley Face Wearing A Mask

Chapter 15: The Eyes Have It

Chapter 16: The Imaginary Operation

Chapter 17: How To Count To 9½

Chapter 18: The Warrior Patient

Chapter 19: Getting Sick Again

Acknowledgments

About the Author: Temple Emmet Williams

Please Review Warrior Patient Heartbeats

Other books by the author

Future Books


An Important Note About the Cover


Edition II (updated and a new chapter)



On the cover, a patient stands on rocks looking at a caduceus rising out of an ocean. It appears to be an allegory of hope, but it represents a misleading one. The symbolic staff, with two entwined snakes and two wings at the top, often used by medical practitioners, has nothing to do with the practice of medicine.

The symbol is a mistake, particularly prevalent in the United States of America. It began when the U.S. Army Medical Corps adopted the caduceus in a patch for their uniforms in 1902.

The medics should have used the Rod of Asclepius, which is the proper symbol of medicine, similar, but quite different. The Rod of Asclepius shows a single serpent wrapped around a rod, no wings in sight. The Greek God Asclepius, associated with healing and medicine, wielded his rod to help the sick and those who cared for them.

The addition of two wings and an extra serpent proved irresistible to modern medicine. Some “medical” television shows have recognized its misrepresentation, one of the most notable being The Good Doctor on Netflix. In that show, you will not see the double-winged emblem on anyone’s lapel. Instead, you see the Rod of Asclepius, the true hero of the sick.

The double-winged caduceus, emblazoned on medical facilities throughout America, is a powerful symbol of commerce, not medicine.

It has historically represented trade, eloquence, trickery, and negotiation, but never medicine.

On the book’s front cover, the patient sees the rising wings and serpents as a sign of hope. By the end of the book, however, he sees it for what it truly represents.

Because he does, he survives the greatest medical system our civilization has ever known.




Author’s Note: this new edition updates some medical information and includes a new chapter called, “Getting Sick Again.” It is almost 50 pages longer than the original edition of “Warrior Patient.”


Chapter 1



The tennis pro, Gary Kesl, stands outside a white stucco clubhouse. He pulls out his cell phone, ready to dial 911. He watches the doubles match on Court Three. Aging tennis members circle a fallen player. Their voices slice through the autumn heat of Boca Raton, Florida.

“Stay on the ground!”

“Don’t move!”

“Are you all right?”

Kids never hear this when they fall on a clay tennis court. They bounce up, embarrassed. Their next shot has extra juice on it. Old guys stay down.

“I’m fine,” you tell your tennis buddies. You give them a thumbs up, struggle to your feet. You do not know that your journey from medical dope to healthy hope has just begun.

It will include cancer, kidney failure, dialysis, deadly infections, partial blindness, shingles, large open wounds, a hernia, and a little amputation. There will be some brilliant doctors, an exceptional one, one very bad one (who goes to jail), a handful of excellent surgeons, and good and bad nurses. You’ll meet a bunch of technicians (one of whom comes close to killing you), and compassionate and careless caregivers. Your blessings include a wife who saves your life, more friends than you knew you had, and lessons in survival that change your life, for better rather than worse. And humor, there will be humor.

You still don’t remember who won the point or the game or the match when you trip and kiss the clay. Your seemingly harmless fall gives you a back twinge for a few days. A year later, doctors found a hematoma in that area, a blood leak into muscle, with nowhere to go. Your body surrounds it with an envelope, isolates it like water in a balloon. A good immune system does this. Life-threatening infection appears at the base of the hematoma. It tries to overpower your good immune system.

On the day of the tennis court stumble, you repeat: “I’m fine.” Gary Kesl, who played doubles at Wimbledon and coached a lot of world-class tennis stars, pockets his cell phone. He’ll put some extra clay on Court Three and have his assistant work it into the lines later.

Between games, a quick calendar check on your cell phone reminds you that you have an appointment with your primary doctor the next day.

“Can’t play tomorrow, guys.”

“You hurting?”

“I’m fine. I’m good. Annual check-up. Time for the once-a-year snap of a rubber glove.” This reference to getting what doctors call a DRE (digital rectal exam) gets a nervous laugh from all the men. Two of them are prostate cancer survivors.

You step back onto the tennis court, bouncing a little to prove you’re okay.

“Serve ‘em up,” you say. You stretch, lean down and touch the ground without bending your knees. Well, maybe a little. Your partner, Lee Gelfond, watches you. “I’m fine,” you say to yourself, as well as to him. “I swear I’m fine.”

“Don’t overdo it.” He says this often.

That evening, you have a conversation at a dinner party that you repeat to your primary doctor the following day. You do not understand its significance at the time.

“All I could think about was sex,” your dinner partner tells you. She is a cute redhead, with a trace of freckles scattered in a tight face. Your wife of 39 years smiles at you from the other side of the table. She can hear a pin drop in a crowded room. Your wife is a beautiful woman. Swedish. An athlete. With a heart that weeps if a tiny frog drowns in your swimming pool. You wake up every morning thinking you might be the luckiest guy on earth.

You believe it.

You arch your eyebrows at your dinner partner and wonder what she would look like with duct tape over her mouth. She continues: “It was the only way I could compete with the male traders.”

She is talking about testosterone treatments she takes when she is a 32-year-old floor trader at the Chicago Mercantile Exchange. She trades better, matches the aggressive behavior of the men around her, takes uncommon and uncomfortable risks. She also grows facial hair. You detect no mustache or sideburns, just faded freckles and slight smile lines.

“But it was the sex thing that bothered me the most,” she adds. “All I could think about was sex.” She stabs some steak on her plate. “I feel sorry for men.”

Tough conversation. Tough lady. “Yes,” you reply. “Shaving is no fun.” You laugh. Your wife giggles on the other side of the table. She must have thought of something funny.

You tell this story to Doctor Efrosini “Susan” Barish, your primary physician, during your annual check-up at Personal Physicians Associates. She’s a tall, slender woman with an easy smile, dark-haired, with slightly olive skin from her Greek heritage spread across sharp, attractive features.

You often talk about her daredevil son’s escapades around the world. She worries about him with pride.

Doctor Barish smiles at your testosterone story, snapping on her rubber gloves.

“Bend over.”

Once again, you expect to have a nice, small prostate.

“Have you been taking any testosterone treatments?” she asks. You assume she is continuing the conversation.

“No.”

As you pull up your pants and tighten your belt, she looks at the latest lab tests you have taken before your annual check-up. Her eyebrows move up, painting wrinkles on her forehead. You feel your forehead mimic this. Something is not right.

“Do you sleep through the night without going to the bathroom?”

“No,” you admit. “I usually make one or two pit stops.” It seems pretty normal to you. She keeps scanning the lab test. “My tennis and golf buddies say I go a lot more often when we’re playing nowadays,” you add.

It comes as an afterthought. It never has much meaning until right now. You consider yourself pretty healthy, active.

“Your PSA has moved up from 1.2 to 4.2 in the last year,” Doctor Barish tells you. “I think we need a biopsy of your prostate.”

“What’s a PSA?” you ask.

“It’s a marker,” she explains. “It helps detect possible problems with the prostate.”

The prostate-specific antigen (PSA) test measures an enzyme in the blood. The glandular cells of the prostate produce the enzyme. High blood levels of PSA point to prostate problems, including cancer.

In 1986, the Food and Drug Administration (FDA) approved the PSA blood test as a means of determining the effectiveness of prostate cancer treatment.

Today, PSA levels, expressed as nanograms per milliliter, act as an early warning tool for men with prostate cancer.

“What happened to my nice, small prostate?” you ask Doctor Barish. You suddenly realize she has not looked at your latest lab tests before the snapping of the rubber glove for the digital rectal exam. She is seeing the numbers, registering them, for the first time.

“Your nice, small prostate is a lot larger than it was a year ago,” she tells you. The examination room remains quiet for a moment.

“Well, it’s time it grew up,” you joke. The doctor does not smile. She repeats: “We need a biopsy of your prostate.”

Most men with an elevated PSA do not have prostate cancer. More likely, they suffer from benign prostate enlargement or inflammation. But for older men, a group in which you qualify, levels above 3 to 4 ng/mL usually indicate the need for a biopsy. Every year, doctors perform a million prostate biopsies in America. A third of them point to cancer.

More recently, a new screening tool offers better accuracy than PSA blood tests. The new approach, called the 4KscoreTM test, isn’t specific to cancer, and it allows for the PSA rise that naturally occurs with age. It does not eliminate the PSA test, but it does identify high-risk patients before you submit to the dangers of a prostate biopsy (the main risk being an infection). The 4KscoreTM test procedure is unavailable when they examine you.

Doctor Susan Barish gives you a urologist's name: Doctor Emanuel Gottenger, Advanced Urology of South Florida. He will perform your biopsy. You need to make an appointment as soon as possible. You leave, convinced it would amount to nothing. Still, you may as well make the appointment. You consider not doing so.

Primary physicians are the gatekeepers of America’s health care system. Except for emergencies, you have a hard time playing with doctors or hospitals or nurses or specialists or technicians without their approval. Depending on your medical coverage, you may or may not be able to choose your specialists. Once you are in a hospital, it’s tough to get out without the discharge authority from your primary physician.

According to the American Academy of Family Physicians, demand for primary doctors has jumped dramatically. The Academy says that growth in population, aging, and increased coverage will require over 50,000 new primary physicians by the year 2025.

Being a gatekeeper does not pay as well as being a specialist. Because of this, many primary doctors are specialists, too.

The Association of Medical Colleges puts primary care physicians in the penalty box right from the start. High student loans and low pay during residency do not always attract the best and the brightest.

If you are not near the top of your class at medical school, becoming a primary doctor could well be the avenue of least resistance into a successful future.

For many doctors, but especially for primary physicians, referrals are a business, not a filter for quality care. Nevertheless, many patients assume their primary physician has prescribed the best solution, not the easiest or most profitable one. Patients can pay a terrible price for this.

Consider this scenario (it happens a few months later, but it’s a perfect example here). The phone rings. You hear tears, crying, fear. “I have ovarian cancer,” your wife weeps. Words tumble through the phone; each word bruises the next with increasing pain.

“The nurse says she is so sorry she’s so sad it’s a huge mass according to the doctor, and oh the nurse looks so scared oh God what am I going to do they can’t even see my ovary the mass is so big.”

Her words slip into short breaths, an empty sound, but easily heard.

You and your wife have been together a long time. Kerstin is a tough, Swedish-born American, who has run large organizations, started chambers of commerce, run her business on her own. She is in tremendous physical and mental shape.

“Are they certain it’s ovarian cancer?” You want to climb through the phone. Hold her. Protect her.

“They can see the mass on the ultrasound they just did,” she sobs, but a little calmer now. “It’s huge. It scared the nurse. You could see it in her face. They can’t even see the ovary.”

According to the nurse, there is a test they still have to do; something called a CA-125, which will confirm cancer.

Kerstin returns home to wait for the results. The nurse promises to call as soon as they know anything. “I know it’s bad,” Kerstin tells you. “I thought the nurse was going to cry when she talked to me.”

Nothing happens for several days, although you both decide a second opinion makes sense. Kerstin asks her primary physician, also Doctor Susan Barish, for another referral.

Before she visits the second ObGyn, Kerstin calls the first referral and asks to speak to the doctor. She feels as if she is dialing for a firing squad. It is one of the most difficult calls she ever makes.

The nurse comes on the line after a long wait and says: “It was nothing. Just a fibroid. The CA-125 is negative. Nothing to worry about. The doctor says do NOT have it removed because surgery can always lead to complications.”

“It was nothing?” Kerstin whispers into the phone. “Why didn’t you call?”

The nurse says nothing. After a while, Kerstin asks if she’s still on the line. “I did call,” she finally says. “I left a message.”

You are a financial trader and a real estate broker. Every call made to your home gets digitally recorded, especially if you are not available. The nurse never called.

In her relief over the negative test for ovarian cancer, Kerstin lets the insult of frightening, careless communication wash away. The aftertaste of misused authority lingers, however, even today. It remains inexplicable, troubling, and shockingly common.

Kerstin decides to continue with the second opinion. The next ObGyn works out of an office that looks like it has not changed in 50 years. Old furniture displays tattered magazines in poor lighting. It feels tired, tarnished. The doctor and his nurse agree that Kerstin has a fibroid mass.

“We can remove that right away,” the doctor says. His assistants start scheduling the operation for Kerstin. Which hospital does she want to use? The Boca Raton Regional? The Delray Medical Center? The doctor has no preference. Everything starts moving very fast. They shove permissions and authorizations in front of Kerstin. They demand signatures.

“NO,” stops everything. “No!”

Kerstin walks out, comes home, unwilling to fall into the trap of a thoughtless system that views patients as opportunistic revenue streams. She changes her primary physician.

In the end, Kerstin has a non-invasive, outpatient hysterectomy. They remove a fibroid mass confirmed as benign. The surgeon is the newly-appointed head of the Cleveland Clinic in West Palm Beach.

Kerstin spends a lot of time identifying the right doctor and approach, using cyberspace and testimonials and success rates as her guide. The operation is simple, successful, and her life returns to normal within days.

From start to finish, Kerstin’s journey from “You have ovarian cancer” to becoming a successful Warrior Patient lasts less than two months. Your journey takes much longer, over three years.


Warrior Patient Rule 1: Choose to live. Take personal responsibility for getting better. It is not your doctor’s job. It is not God’s job. It is your job. God and your doctors might help. And they might not.


Back to the Table of Contents

Chapter 2



“We’re going to give you a local anesthetic to numb things up and then the doctor will perform the biopsy,” the nurse says. She shows you into a small room at the urologist’s office, with an examination table and a chair and some medical equipment that means nothing to you.

“We take pictures as we do it,” she says.

“I’m sorry about the cat pee,” you answer, kicking off your shoes and sliding them quickly under the chair.

“I beg your pardon?” the nurse asks.

“One of our cats took a pee in my loafers, and they stink a little,” you say. “I never smelled it until I was in the car on my way here. Guess I should have gone back and changed my shoes, but I didn’t want to be late for my 45-minute layover in your waiting room.” Her eyes get a little skinny. You consider apologizing for being on time for the appointment.

“I think it was Truffles,” you say. “That’s the name of the cat.”

The nurse says. “First we take photos, and the doctor takes samples of different areas of your prostate, which we send in for analysis. We’ll know next week.”

“A feral cat invaded our courtyard; that’s what made Truffles do it,” you say. “I’m going to have to toss the loafers.”

You focus more on the cat’s territorial rights and bad manners than on the possibility of prostate cancer.

You feel fine, quite certain that they won’t discover anything.

The nurse holds up a black, snake-like ultrasound probe. A biopsy gun gleams on the end of it. It is the gun that will fire a needle through the wall of your rectum, taking scrapings of your swelling prostate.

“The camera,” she says, simplifying the device. You suddenly have no concern about the cat or your loafers.

You immediately recognize this ultra-sound probe as the spawn of giant pythons invading the Florida Everglades.

“I’ll try to focus,” you say, adding: “You have a very nice waiting room.”

The urologist appears, Doctor Emanuel Gottenger, Advanced Urology of South Florida. He’s a stocky guy who probably could shave twice a day. South America gives his voice an interesting cadence, somewhat soothing, but matter-of-fact, professional. You don’t expect you’ll see very much of him in your life. You are two strangers, passing in an examination room that you will never visit again.

Rubber gloves snap.

You get numbed with a local anesthetic. You lay on your side. You are quiet during the 15-minute procedure.

The probe emits sound waves that convert different prostate zones into video images. The urologist explains the procedure while he does it. “You’ll hear a clicking sound, and that’s the device taking off a thin strip of tissue from one of the sectors the pathologist will analyze. There will be a dozen strips. You shouldn’t feel anything.”

Click. Pause. Click. Pause. The seventh click gets repeated in the same area, and there’s a slight twinge of pain, more of a surprise than anything else. Then you’re done.

You ask to see his handiwork. He shows you a dozen little vials, each with a tiny worm-like strip of pink tissue in it.

“See you next week,” Doctor Gottenger says. “They’ll set up an appointment on the way out. Why does it smell like cat pee in here?” The nurse points at your offending loafers under the chair. You start to explain, but the urologist is already out the door.

“Turn right and make an appointment at the desk,” the nurse tells you, trailing after him.

“See you next week,” you tell nobody, as you finish dressing to leave.

You give little thought to the biopsy during the next seven days. You play tennis, golf, go biking and swimming, and build a computer from scratch. You recognize the last as a distraction. You understand and enjoy computers, having spent several years as the leading contractor for creative services at IBM’s multimedia laboratory in Palisades, NY. In youth, you messed with cars. Now you buy motherboards and daughterboards and processors and disc drives and build a super fast black box that welcomes every corner of the world into your home through the internet.

During the week, tissue samples from your biopsy slip under the microscope of a pathologist, who records a description of each and the area of the prostate from which it came. The descriptions define the cell samples as normal (benign), suspicious (atypical) or malignant (cancer).

Malignant cells receive a grade based on their appearance. The grading determines how aggressive cancer has become.

Low-grade cancer cells appear close to normal. Intermediate-grade cells have lost many of their features. They look sloppy and disorganized. High-grade cancer cells appear distorted to the point where they bear little resemblance to normal cells.

Pathologists require at least four years of residency training beyond their four years of medical school. Many have sub-specialty training in disciplines such as urology. The pathologist examines the core specimens, looking for something called a Gleason Score, which currently benchmarks whether or not you have cancer and its degree of severity.


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